tag:blogger.com,1999:blog-51123881118065922752024-03-06T12:02:22.265-08:00Molly's ALL (Acute Lymphoblastic Leukemia) BlogLeiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-5112388111806592275.post-59264232547893163492016-05-23T16:38:00.000-07:002016-05-23T16:38:50.790-07:00Molly Grace Shupe (2010-2016)<span style="color: #f03e90;"><br /></span>
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1tqgK_aiT9eW1MQ-KnNthn71Flpspm7Hpyc9abuxgVXTKXksyGgOinNcqo6sv-4kv2fUiCLTLwlmNdLj_y_dg6rwxzBvyh8ZdPnjgOOitJxucM4VQOQVCX3G-tVPAEymztwlmaxQ4UYuk/s1600/20160416_121451.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1tqgK_aiT9eW1MQ-KnNthn71Flpspm7Hpyc9abuxgVXTKXksyGgOinNcqo6sv-4kv2fUiCLTLwlmNdLj_y_dg6rwxzBvyh8ZdPnjgOOitJxucM4VQOQVCX3G-tVPAEymztwlmaxQ4UYuk/s320/20160416_121451.jpg" width="212" /></a></b></span></div>
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<span style="color: #f03e90; font-size: large;"><b><span style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>Molly Grace Shupe</b></span></span></b></span></div>
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<span style="color: #f03e90;"><i><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><i><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>November 23</i>, <i>2010 </i>- <i>May 21</i>, <i>2016</i></span></i></b></i></span></div>
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Molly Grace Shupe was called home on May 21, 2016, following a 3-year dance with childhood leukemia. She fought hard, and put on such a brave face one would hardly know she was suffering.</span></b></span></div>
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Molly’s life seemed so short, and yet the quality of her existence far exceeds the quantity of days she had on this earth. She was quick to love and made fast friends with any who made the slightest effort to show her kindness. She lived for routine and was diligent in making sure the rules were followed and promises were kept. She had an expert imagination, with dreams that could rival the best. She often surprised us with how clear and precise her memory was.</span></b></span></div>
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">She is survived by her daddy, James; mommy, Leisel; big sister, Annie; little brother, Jack; and her grandparents, many aunts and uncles, and a cousin. She was preceded in death by her paternal great-grandparents James Lennis and Drue Wilson Chambers of Trenton, Utah, great-aunt Alice Susan Olcott of Mesquite</span><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, </span><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Nevada; maternal great-grandfather Earl Henry Moser of Willcox, Arizona; great-uncle Craig Timothy of Phoenix, Arizona; maternal great-grandmother Helen Ann ”Nana” Lewis of Pocatello, Idaho, and first cousin once-removed Mia Catherine McClellan of Nampa, Idaho. </span></b></span></div>
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We believe that families are forever. Molly is welcomed home by her loved ones in the next place, and will be reunited with her earthly family in the future.</span></b></span></div>
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A viewing will be held from 6 to 8 p.m. on Thursday, May 26th at the Lindquist Mortuary, 3408 Washington Blvd in Ogden, where the family will receive condolences. A small intimate graveside service for immediate family will be held the next morning. <b> </b></span></b></span><br />
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<span style="color: #f03e90;"><b id="docs-internal-guid-f97bd729-dfea-1fee-db4f-1903adcd33ec" style="font-weight: normal;"><span style="background-color: transparent; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b>A celebration of Molly’s life will be held on November 19, 2016, with details to follow at <a href="http://mollyscancerblog.blogspot.com/">mollyscancerblog.blogspot.com</a> and <a href="http://facebook.com/mollysurvivesthrives">facebook.com/mollysurvivesthrives</a>.</b></span></b></span></div>
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</b></span>Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com5tag:blogger.com,1999:blog-5112388111806592275.post-13107976889569389752015-05-04T09:56:00.002-07:002015-05-04T09:56:41.787-07:00Hospital Stay, Weeks 8-9<span style="font-family: inherit;">It's been about 2 weeks since the last update. At the time of this post, Molly has not been outside of the hospital for 9 weeks. A lot has been going on though!</span><br />
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<span style="font-family: inherit;">Here's a rundown of what her routine looks like:</span><br />
<span style="font-family: inherit;">Daily weight and girth measured, sheets changed, sponge bath, room disinfected, and vitals taken every 4 hours. Every few days we wash her blankets from home, change the ostomy bag and wafer, and change the PICC line dressing. Since Molly has been here so long, we've worked out with the nurses to get her wrist band changed every two weeks as well.</span><br />
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<span style="font-family: inherit;">In the last two weeks Molly has had periods of feeling nauseated, but since she's not back to eating food again it's been mostly dry heaves or if she gets anything out its mucous. She's also had feelings like she needs to pee, but she shouldn't be feeling too much of that with the catheter she still has, so the doctors have been trying to figure out what is going on there. They originally thought the first catheter wasn't in good condition anymore, so they replaced that and found there was a build-up of sediment on the end. That didn't stop the fullness feelings, so they then thought it was bladder spasms, so they started her on a medicine for that and it seems to be working a little. She still has feelings of needing to pee, but it doesn't hurt as much and we're able to alleviate the feeling if we make sure the tube from the top of the catheter to the end container is drained. They have been testing frequently for a urinary tract infection or bladder infection and all tests have come back clean.</span><br />
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<span style="font-family: inherit;">Monday, April 20, Molly went to the OR to have the plastic surgeon assess her wound condition, and this time it took only 30 minutes, the fastest she's ever been in the OR. The surgeon took both of the drains out and said the wound is looking extremely good. He's very happy with her progress.</span><br />
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<span style="font-family: inherit;">On April 23, Molly was having abdominal pains again, which she said were higher than where her bladder is, so they did an ultrasound, which looked fine. The next day the ICS doctor expressed concern that Molly wasn't having much output from her colostomy, so they did an x-ray, which also looked fine. They did a sort-of enema into her colostomy and that seemed to clear out a small clog, and her colostomy is now working well.</span><br />
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<span style="font-family: inherit;">On Saturday, April 25, Daddy got a little break and went golfing with some of the extended family and friends. It ended up raining, but Daddy and Uncle DJ stuck it out and had a lot of fun anyway. Molly had fun with Grandma and Grandpa while Daddy was golfing.</span><br />
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<span style="font-family: inherit;">Molly was on morphine up until April 27, and then they weaned her off morphine and started her on Oxycontin every 3 hours. We've been working on getting her weaned off that now, and yesterday they moved the Oxy to every 6 hours and she's doing fine on this frequency. </span><br />
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<span style="font-family: inherit;">A few days ago the ICS doctor told us that the surgery team feels Molly has had enough time to heal from the ileostomy to colostomy surgery and we had an NG tube (feeding tube) placed in through her nose down to her stomach, and have started her on a slow-feed of an organic soy-based formula. She's had nearly nothing going through her digestive system for so long that we need to go very slowly with starting her on food again. We're weaning her off the IV nutrition (TPN) as we are increasing the NG formula. Molly has had a few bouts of nausea, so we've kind of been on a roller coaster with the amounts of NG formula she's been getting.</span><br />
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<span style="font-family: inherit;">Last Tuesday one of the plastic surgeons came by and removed half of the stitches (every other one), changed the catheter, and let us know Molly can now be off bed-rest and work on standing again. He said she cannot sit yet though, so we tried lifting her to a stand from lying down and she was able to stand for only about 10 seconds before it hurt too much. Her feet have been unused for just over a month, so it's going to take a little work to get her back to walking on her own.</span><br />
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<span style="font-family: inherit;">Over the last week we've been researching protocols that other relapse patients have used instead of bone marrow transplant (BMT) and talked to the oncologist about the choices we have for Molly. We didn't feel that a BMT even in the next few months would be the best for Molly considering the complications she's been through recently, and the oncologist agreed with us, especially since we don't have a 100% BMT match for Molly yet. We've all decided it would be a good idea to try a treatment that is in the middle of being researched called <a href="http://www.chop.edu/centers-programs/cancer-center/t-cell-therapy-ctl019#.VUeWipNH4g8" target="_blank">CAR T-Cell therapy</a>. What they do is let the leukemia come back to a certain percentage of blasts, harvest t-cells from her blood, take them to the lab and educate them to attack cells that carry the leukemia protein (takes about a month), and then infuse them back into her bloodstream and let them take over the fight. In the time between when they harvest the cells and infuse them back in they will give her a couple of chemo drugs (Cytarabine and Etoposide) at low dosage to hold the leukemia at bay until the t-cells are ready. It is risky in that we have to let the leukemia come back again, and we don't know for sure the efficacy of the therapy, but risks must be taken for progress to be made. In the meantime the oncologist agrees that it would be a good idea to give her the herbal supplements and homeopathic remedies that we were giving her before we started the BMT chemotherapy. The CAR T-Cell therapy will cause fevers and other complications that arise when great amounts of leukemia cells are being killed, so she may have to be inpatient at the hospital for awhile when she receives the educated t-cells. If the treatment is not successful, then there is another chemotherapy protocol we can try (high-dose methotrexate, 2 years long), or we can go the BMT route again. We'll cross that bridge when we get there.</span><br />
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<span style="font-family: inherit;">Yesterday the oncologist looked Molly over and declared that once the plastic surgeons are happy with her condition, they don't see any reason to keep her at the hospital anymore! She'll be getting the rest of her stitches out tomorrow morning, and then in a few days we expect that she'll be allowed to sit up, and the catheter can be removed. She'll keep the feeding tube for a little while until we build back up to eating real food again, but when we go home I can create a blenderized meal for her tube with the Vitamix.</span><br />
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<span style="font-family: inherit;">It is much easier for us to do quick updates on <a href="https://www.facebook.com/mollysurvivesthrives" target="_blank">Molly's Survival and Thrival Facebook page</a>, so be sure to pop in over there often. We post pictures and everything! I don't think you are required to have a Facebook account to view the page, so it's a win-win situation if you bookmark the link to her page!</span>Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-77104324428434388012015-04-17T14:25:00.001-07:002015-05-04T09:56:00.728-07:00Molly's big surgery, part 2<span style="font-family: inherit;"><span style="font-size: small;">Continued from <a href="http://mollyscancerblog.blogspot.com/2015/04/mollys-big-surgery-part-1.html" target="_blank">here</a></span></span><br />
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The surgery on Monday went perfectly. The plastic surgeon was able to get the front part of Molly's wound all stitched up and he tightened the stretching stitches on the back part. He said it looks very good and he's very optimistic that he will be able to get it all closed up well on Wednesday. The oncologist found me that afternoon and said that he has been talking to a couple of doctors at Northwestern University, and they are sure that we can get her ovarian tissue preserved! That was such great news, since we were really sad when we heard that her chances of having biological children later on will be basically non existent after radiation. He said that he was working with the fertility lab at the University of Utah Hospital and they will cover the cost of extraction (which is easy since the ovaries are right there in the way when the colon is accessed), the pathology costs (to make sure the tissue is healthy and worth preserving), the freezing, and the first 60 days of storage. </span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Tuesday night, the fertility doctor from UofU came by to meet with me and Daddy and explained more about the whole process. Basically, they remove one ovary, send a very small piece of it to the pathologist, slice the rest into small pieces and separate them into about 30 vials, use a special slow-freezer to freeze them, and store them until we're ready to have them shipped to the long-term storage facility. Then we'll pay a yearly storage fee ($300-$500 probably) until Molly wants to use the tissue, at which time they will go over the options we have, hoping that medicine advances enough in the next 20 years to increase the chances of successfully maturing the follicles and achieving pregnancy. He explained that when you freeze cells there are always some or all that end up dying, so there's a very real chance that 20 years down the road when Molly is ready to use this tissue, we will have no success with it, but it's worth a shot. He also told us that they have been back and forth so many times in the last two days about whether we would be able to do the preservation or not, not because it is a hard procedure to do, but because they simply don't have the equipment anymore (they used to have the equipment for other research 7-8 years ago but have since gotten rid of it). He said that they were able to find the equipment they needed though, and the special solution they need to put the ovarian tissue in is on it's way so they should be ready by the time they remove the ovary the next morning.</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">On Wednesday April 15, Daddy took work off again for the big surgery and we got Molly all ready with a sponge bath. I walked with Molly and her bed down to surgery while Daddy took Little Brother down to the surgery waiting room. Big Sis was at Grandma's house for the day. I stayed with Molly while the OR nurses gathered all the paperwork together and the anesthesiologist gave me the rundown of the risks of anesthesia. The oncologist came by and told me that they are all ready to preserve the ovary, and that the bone marrow aspirate results showed the leukemia is still in remission. He said that he and the rest of the team are still talking about putting Molly on low-dose chemotherapy drugs to keep the leukemia in remission while she heals from these other things. The surgeon then came by and said they are all ready to go on his end, and he's got the plastic surgeon coming in after he's done with the rectum removal, ovary removal, and colostomy to stitch up the rest of the open wound she's had for the last three and a half weeks. The operating room was ready for her at that point and I sent her off with the nurses and went to the waiting room. She went in at 10:30am.</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A few hours later, the surgeon came out to let us know he was done with his part. He said he was surprised at how necrotized Molly's rectum was, and he would have removed it anyway even if we went in thinking we were going to leave it. He said every other part of the surgery went as planned, they got the ovary sent off to the fertility department, and the plastic surgeon is now in there closing up her open wound.</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">About 2 hours later, the plastic surgeon came out and gave us a rundown of what he did. He said the front part he stitched up Monday looked very good still, and he was able to get the back stitched up to where he was happy with it. He had to move muscle around a little though. He showed us pictures of what it looks like (don't ask to see them...we're only showing grandparents, and only if they want to see) and we could see she will need a lot of surgical reconstruction in 10-15 years to make things symmetrical again. Until then, she will be just fine with what she has left. Bottom line now is she will retain control of her urine, but the colostomy is permanent.</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Molly's recovery from surgery has been good the last two days. Yesterday she slept most of the day, and today she's awake and talking about stuff, watching TV mostly. The plastic surgeon wants her to stay in bed with minimal movement and he said she will go into the OR again on Monday to look over how things are healing and hopefully remove the drainage system they put in to keep fluids from building up. The general surgeon called me last night to tell me the pathology department got back to him regarding the health of Molly's ovarian tissue, and they said that they found loads and loads of healthy follicles there, so that is really great news! We now need to hope the cryopreservation process doesn't kill all of them, that she will survive the leukemia, and that there will be something we can do with them in 20 years if she wants children.</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We got visits from the child life specialist and the occupational therapist today, and they are hoping to take Molly down to visit the playroom on the 3rd floor sometime next week. They said that she can go down even if she's in her bed, and Big Sis can be there too and they can play together. Things are sounding more and more normal for Molly, it's making us so happy! The surgery on Wednesday and her fantastic recovery so far is almost like Christmas for me!</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Thanks again for everyone's support! You have all been amazing! We've got a long ways to go still, but I don't know how we could've come this far without your help!</span></b></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: small;"><b id="docs-internal-guid-6a7a2013-c942-8e34-8909-18da4d6f5f17" style="font-weight: normal;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We've created a Facebook page for Molly! Come "like" the new <a href="http://www.facebook.com/mollysurvivesthrives" target="_blank">Molly's Survival and Thrival page</a>! <a href="http://www.facebook.com/mollysurvivesthrives">http://www.facebook.com/mollysurvivesthrives</a></span></b></span></span></div>
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</b></span></span>Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-35146391785544501062015-04-17T14:23:00.000-07:002015-05-04T09:56:21.670-07:00Molly's big surgery, part 1<span style="font-family: inherit;"><br /></span>
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<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Now where did I leave off... oh, right. So the last I wrote about was when Molly was just hanging out in the ImmunoCompromised Services (ICS) unit waiting for the doctors to decide to do something else with her open wound.</span></b></span></div>
<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><br /></b></span>
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<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Molly got a care package from one of Daddy's cousins on April 6th, and that package was the best thing that happened to Molly in several weeks! Big Sis was in the room when Molly got the package, and she helped open it. Inside was some small games, a paddle ball toy, a whoopee cushion, some foam butterfly wands, foam doorknob hangers, and foam stickers, and a small package for Big Sis, among other stuff. Molly perked up almost immediately and we got quite a lot of much-needed interaction, smiles, and laughter from her! It was so much fun, and the only times she lost her good mood were when the nurses came in to check her blood pressure and when I had to go home.</span></b></span></div>
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<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The next day Molly had another dressing change in the OR. I caught a cold, which meant I can't go into the ICS unit at all until I was better, so Daddy took off work to stay with Molly. Before the OR, Daddy got to learn how to change Molly's ostomy bag, and he did an awesome job. Molly handles procedures better if Mom or Daddy can do them, so we try to do as much as the nurses and doctors will let us.</span></b></span></div>
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<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In the OR the oncologists were able to do a bone marrow aspirate since the redness from the allergic reaction to the antibiotic has gone away, and then the plastics team decided that Molly was ready to have the roman sandal device placed to stretch her skin. This was sooner than I thought it was going to be, so I we were all in a pretty good mood that day (except for Molly, of course...).</span></b></span></div>
<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;">
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<span style="font-family: inherit;"><b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The next day, Wednesday April 8th, one of the infectious disease doctors said that she's seen 3 other cases of necrotizing fasciitis caused by pseudomonas, and Molly has responded to treatment the best out of all of them! That is such good news! Molly's arm was swelling a bit though, so they did an ultrasound and found a clot in her arm where the PICC line is, so they cautiously put her on a blood thinner medication. The plastics team didn't like that very much, but they allowed it with the condition that she get off the medication on Saturday so that she can clot sufficiently on Monday at the next scheduled surgery.</span></b></span></div>
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<span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We have been keeping in touch with the bone marrow transplant people, and they said that Daddy and I can now get tested to see if we might be a match, since they haven't found a 100% match for her yet. They said they don't usually test the parents, but we asked if we could anyway. I guess the cost isn't usually worth it. I asked what it could be that is making it hard to find a good match for her, and the transplant lady said that it's usually easy to find a match for the average caucasian in the USA, but sometimes the family history makes it hard. Daddy is pretty much all European in his family history, but I have Mexican and Native American in my lines, so that's probably the hiccup. We'll be getting tested sometime next week.</span></div>
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<span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Thursday was fairly uneventful. On Friday I finally got a chance to wash Molly's hair with shampoo in warm water (she's been getting sponge baths, and those don't do much for hair), and I found a big knot on the back of her head that I could not untangle, so I ended up just cutting it out. Sometime this next week I will be evening out her hair length, as it is kind of crazy right now! She doesn't seem to mind it much though.</span></div>
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<span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Molly's surgeon met with us Friday night to go over the plan for her big surgery to finish up all these side complications. He said that he met with all the other surgeons and discussed Molly's case and they figure we have 3 options for Monday: #1 we can remove her mostly-necrotized rectum, reverse the ileostomy and stitch her small intestine back together, pull her colon over to the right side where the ileostomy was for an end colostomy, and then stitch up anything else that is still open. #2 we can leave the rectum there with the hope that in the future we might be able to connect her intestines back up but suture it closed for the time being, reverse the ileostomy and do a colostomy, and stitch up anything that's still open. #3 we can do nothing but a dressing change so we can have a few more days to decide. We brought up something I heard about in one of the Momcology groups on Facebook: the Children's Hospital of Philadelphia (CHOP) is conducting a research study on ovarian tissue cryopreservation in female cancer patients. I asked if we could do something like that for Molly since the radiation she'll be receiving for her bone marrow transplant will likely cause her to be infertile. The surgeon had never heard of anything like that, but he promised to ask the other surgeons as well as the oncologists to find out if it's possible. </span></div>
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<span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The weekend was a little busy. Big Sis had her state tumbling meet on Saturday, and Grandpa on Daddy's side stayed with Molly so Daddy could be there too. Then Sunday my family and a couple close friends came to visit Molly. She was very interactive for all the visits, much to the pleasure of everyone that visited! It was so good to have everyone over for a little while.</span></div>
<br /><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Daddy and I talked about the surgical options over the weekend and early Monday morning the surgeon came by to check in with us before Molly's surgery that day. He said that they talked about Molly for almost a full hour that morning in rounds and they decided they would not recommend leaving the rectum there at all. Also they got a little more information about the ovarian tissue cryopreservation, but they haven't ever done that here in Utah. He said that the oncologist is contacting fertility specialists at Northwestern University where they are also conducting a study on this topic and he will hopefully have an answer very soon about whether it would be possible or not. We decided to postpone the full surgery until Wednesday because of this fertility possibility, and go ahead and do a dressing change and see if the plastic surgeon can stitch her crotch wound up a little. </span></b><br />
<b id="docs-internal-guid-6a7a2013-c939-a9ca-db36-dac58c1af411" style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To be continued</span></b><span style="color: black;"><a href="http://mollyscancerblog.blogspot.com/2015/04/mollys-big-surgery-part-2.html" target="_blank"><span style="font-weight: normal;"><span style="background-color: transparent; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> here...</span></span></a></span>Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-1059592951128943732015-04-05T11:05:00.000-07:002015-04-05T12:14:49.147-07:00Post-Operation RecoveryFor the first week after the surgery to remove Molly's infected skin she was in the Pediatric Intensive Care Unit and on a ton of medicines to prevent any type of infection. I don't know exactly which ones she's on, when they started them, why they started them, and when they started taking her off of them. Things are so fast-paced here that I can hardly keep up.<br />
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At the PICU Molly eventually got to a point where her blood pressure was pretty stable and she didn't need quite as much of the medicines she was getting, so the doctors there decided that she could move back up to the ICS. Since they absolutely will not make exceptions for babies and siblings to visit PICU patients unless there are very special circumstances, I had some family sit in the PICU waiting room with Big Sis and Little Brother during the day so I could sit with Molly and then just pop out for a bit every couple of hours to nurse Little Brother and make sure Big Sis was behaving well enough.<br />
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Molly got transferred up to the 4th floor again after Daddy got back from work on Wednesday March 25th (5 days after surgery). Then the next day her ANC suddenly jumped up from 0 to 0.4! The Neupogen (white blood cell growth hormone drug) is working! She had a dressing change again, which meant no food for about 8 hours before. Molly doesn't seem to mind not eating anymore, but she still requests water often.<br />
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After the surgery, one thing we've been watching carefully is swelling of her abdomen. She had pretty bad swelling of her body and legs and feet which got worse until we got to the ICS, and there they gave her a diuretic which helped a lot with that. Currently she is not taking as much of the diuretic, and her swelling is still going down.<br />
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On the 28th, Molly's ANC went up to 2.5 (she's never really been up higher than 1.5 in the last two years, so this is a really big number for her! Normal is between 1.5-8.5.) Then it was 3.2 on the 29th, and 5.8 on the 30th, so they stopped giving her the Neupogen shot.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibcppRu80Fncf0dXMDYRHWlpcZ9tMyGGC-g-FoBPT26poDQ6fDBPw2CbJnZ81mvBBaMSwsSt5lv1sBmRvYcSlDavwAhsczp-b7HrSHIYbGKvTWccU5QFuCthzG_C2Tes_s77rmHzK3yc_a/s1600/20150331_094324.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibcppRu80Fncf0dXMDYRHWlpcZ9tMyGGC-g-FoBPT26poDQ6fDBPw2CbJnZ81mvBBaMSwsSt5lv1sBmRvYcSlDavwAhsczp-b7HrSHIYbGKvTWccU5QFuCthzG_C2Tes_s77rmHzK3yc_a/s1600/20150331_094324.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing well on March 31st, preoccupied with picking dry skin off her lips and fingertips.</td></tr>
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As far as the open wound goes, they have been replacing the wound VAC every few days, but the plastics team have been checking for healing tissue around the wound and at first they were thinking of placing a synthetic skin dressing called Integra on her wound to help heal it until her body is strong enough to deal with a skin graft. Now they are telling us that they think her wound is looking good enough to be able to stretch the skin around it and just do a small skin graft in the widest wound area. This is very good news for Molly.<br />
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The oncologists are still concerned about the leukemia Molly still has to deal with, but they know that this open wound is the priority right now. They are pretty certain the last block of chemo got her into remission, but they aren't able to confirm that with a bone marrow aspirate yet because last week Molly got skin redness that started spreading at her wound and went up to her scalp in just a few days. Turns out she was having an allergic reaction to the antibiotic Meropenum and once we stopped giving her that and started a different antibiotic, the redness started going away. The oncologists are hoping to get an aspirate done this next week. They say that if the leukemia does start to have more of a presence again, they can use certain chemo drugs to hold it off for awhile while we finish healing this skin wound. They really don't want to subject her to more heavy chemo and radiation until she's healthy again.<br />
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The bacteria that they say caused the skin eating rash is pseudomonas. They also found this bacteria in her port implant, and it was proving difficult to get rid of with drugs, so they ended up removing her port during one of the scheduled dressing changes and placing a <a href="http://www.mayoclinic.org/diseases-conditions/cancer/multimedia/picc-line-placement/vid-20084657" target="_blank">PICC line</a> in her left arm. After a few days, that PICC line developed a clot at the end of it and so they removed that and placed a new PICC line in her right arm. Molly has been having some pains in relation to her wound and the PICC line and her swelling, so they have her on morphine still, and she has a button she can push to get another small dose of morphine every 10 minutes. She usually declines pushing the button though, saying all she needs is to rest and it will stop hurting. She's so strong.<br />
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Right now Molly is just hanging out in her room in the ICS unit, passing the time watching just about every animated movie made (Ratatouille is still a favorite, but she's watching Cars and Monster's University a lot too), and enduring the every-4-hours vital signs check and the constant visits from doctors from just about every department in the hospital. She's got the oncologists, the ICS team, the plastics team, the physical therapy team, the infectious diseases team, the dietitian, the urologists, the wound VAC and ostomy team, and several others I am probably forgetting. The trouble is that all these teams show up at different times from each other, and so she gets a visit nearly every hour from someone until the afternoon where we have a few hours undisturbed.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLFDQbj_p-Qq9sgGr73Cg-XcLHqOfgjF59AEeora9JPak28M-OzL_0BkvZGpKwLUbrR509qk91-mJx5-5eP4ctRDnqE7TqFbEB2XCdb_POtt-bjSo9wvelaJgz51yYDCYGmE7XjQ4QK5c1/s1600/20150403_144046.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLFDQbj_p-Qq9sgGr73Cg-XcLHqOfgjF59AEeora9JPak28M-OzL_0BkvZGpKwLUbrR509qk91-mJx5-5eP4ctRDnqE7TqFbEB2XCdb_POtt-bjSo9wvelaJgz51yYDCYGmE7XjQ4QK5c1/s1600/20150403_144046.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly had a rare energetic minute, and we played a modified version of pictionary. This is a cat she drew. Taken on April 3rd.</td></tr>
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The Intermountain Healthcare system of hospitals lifted the flue season visitor restrictions on the 2nd of April, so now siblings younger than 14 can come see patients, and that means I can bring Big Sis and Little Brother in to Molly's room with me while I am there. This makes things so much more convenient!<br />
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Molly gets a lot of gifts sent to her, and she loves to open the packages, but she never really keeps the gifts for herself. She is more of a "quality time" kind of kid, so she's been regifting most of the stuff she receives to Big Sis or Little Brother. She really loves to give them stuff, it's so cute.<br />
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Sorry for the punctuated format of this post. As I mentioned, things are happening at a very fast pace and it's hard to find the time to frequently post, so my posts get written less frequently and I just have to try to remember everything that has happened. If you'd like, you can visit my <a href="https://www.facebook.com/leiselshupe13" target="_blank">Facebook page</a> where I post more frequent Molly updates publicly.<br />
<br />Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-1271345821200015712015-03-28T08:22:00.000-07:002015-04-05T09:39:45.785-07:00Surgery for Necrotizing Fasciitis<!--[if gte mso 9]><xml>
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<span style="font-size: small;"><span style="font-family: inherit;">On our way down to the hospital I talked with Big Sis about
what was happening to Molly and why we were going down that night instead of
waiting for our weekly visit the next night. Big Sis didn’t seem too shaken by
the possibility that Molly could die that night, but she did express to me that
she was sad about it. We picked up some Wendy’s chicken nuggets to eat for
dinner on the way down there. Big Sis got a toy from the movie Annie, and we sang
“Tomorrow” together in the car. It helped take my mind off what we were going
down to the hospital for.</span></span></div>
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<br /></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu7O2YMPw72YobBD4bhO0vH2IZ7dymAOuPq5BrXVKoov-VTf6nBTe2FQqYyFFjY5y1QGmkrDfcgglRdyK8Eh2TNw3Jr2XOXSVW77xKsticT2APJCwInv8ReG1PrriIaGgRBAIDLBDG2PY4/s1600/DSC_0077.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu7O2YMPw72YobBD4bhO0vH2IZ7dymAOuPq5BrXVKoov-VTf6nBTe2FQqYyFFjY5y1QGmkrDfcgglRdyK8Eh2TNw3Jr2XOXSVW77xKsticT2APJCwInv8ReG1PrriIaGgRBAIDLBDG2PY4/s1600/DSC_0077.JPG" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready to go into surgery. Not having a very fun time though.</td></tr>
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<span style="font-size: small;"><span style="font-family: inherit;">We got to the hospital and Daddy texted saying he was in the
PICU waiting room. We met the social worker that has been on Molly’s case since
the beginning in the lobby of the hospital and she expressed how sad she was to
hear about Molly’s current condition, and asked if she could go up with us to
entertain Big Sis while we were waiting. I was OK with that.</span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: inherit;">We met Daddy in the PICU waiting room and we waited there
while the social worker went to check on Molly. She came back and told us
they’re ready for us to go see her, so we followed her back with the kids.
Molly was asleep and she had several IVs connected to about 9 machines, and a
breathing tube. The nurse chatted with us a little about how she was doing and
told us that she was pretty stable except for a few things they’re giving her
medications for. The surgeon said that they would give her a rest that night
and in the morning they will assess her condition and depending on how she is
doing they will either go back in to surgery in the morning or later in the
day. I took the kids up to the ICS room where Molly had been staying, and slept
there that night while Daddy stayed with Molly in the PICU. </span></span></div>
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<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">Somehow I fit on that couch too...</td></tr>
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<span style="font-size: small;"><span style="font-family: inherit;">The next morning, Daddy texted me from the PICU and said
that Molly is alert, her blood pressure is up, she’s breathing on her own, and
she wants pink lemonade (Daddy had to figure that one out, as Molly had the
breathing tube still and could only mouth the words). I did some of Daddy’s laundry in the ICS
parent room and then when Molly went in to surgery (later in the day, which was
good because that meant that she was doing well enough to wait that long) I
brought the kids to the surgery waiting room and we waited there for about an
hour with Daddy while the surgeons changed the Wound VAC , and checked to make
sure there was no more spreading of the infection. </span></span></div>
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<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">Doing well after surgery</td></tr>
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<br /></div>
<span style="font-size: small;"><span style="font-family: inherit;"><span style="line-height: 115%;">The surgeon came in to give us an update and he
said that he is confident that he was able to get all the infected tissue out,
and he told us that another surgeon is going to perform the ostomy. They wanted
to do a colostomy to output on her left side as that is the best option of the
ostomies, but since the infected tissue was removed on the left side, they have
to do an ileostomy to output on her right side instead which is actually better
in Molly’s case because it allows them to also knock out the intussusception
problem. And Molly can begin eating again because of that. The surgeon told us
that the debridement he did the last night was a very difficult procedure and
they will be checking the tissue for further infection every two days when they
change the wound VAC. We asked about the ileostomy and if it was going to be a
permanent thing, and he said yes because the infected tissue included most of
the muscles around the rectum and she will not have any bowel control. But he
said that she will still be able to control her urine, as those muscles were
largely untouched. </span></span></span><br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">The many machines on which Molly's life depends.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<span style="font-size: small;"><span style="font-family: inherit;"><span style="line-height: 115%;"> To be continued...again...</span></span></span>Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com1tag:blogger.com,1999:blog-5112388111806592275.post-60485667004293562902015-03-26T15:58:00.000-07:002015-03-28T08:23:29.252-07:00Morphine stopped and Necrotizing Fasciitis appeared<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
After a few days of giving Molly the morphine, she was still
getting doses a few times a day. It was managing her pain too well and the
doctors wanted to see how she would do switching the morphine with oxycodone. They
did that switch on Thursday March 19, 2015. They also gave her the
peg-aspargase chemo. She was doing pretty well on Friday while I was there, and
overnight as well. She was still a bit cranky as she was on the steroid pulse
again for the week, and still NPO (nil per os, Latin for “nothing by mouth”)
though she was talking about food quite a lot. Fries and fry sauce (two cups so
she can share with me), healthy pizza, healthy ice cream, healthy milk,
applesauce with the green twisty lid... yeah food is the only thing she wants
to talk about. And the movie she’s watching over and over again for this
hospital stay is Ratatouille. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On Saturday morning Grandpa Wayne came to stay with Molly
while Daddy went to be with Big Sis at her tumbling competition. I was back at
home helping to run a fundraiser yardsale for Molly. We called it “Molly’s BIG
Yardsale” and advertised it pretty well, and ended up getting a very good
turnout! I overheard people talking on their phones about “Molly’s BIG
Yardsale” like it was a legitimate event. We had a lot of item donations from
the community, and a lot of money donations as well. It made me cry a few times
that day. There was also a yardsale going on in Phoenix, which was even more successful than the one here! Big thanks to everyone who donated and helped, and especially to Aunt Ashlyn for coming up with the idea and running with it!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While Daddy was at the tumbling meet, Molly noticed some
“bumps” on her bottom when she used the toilet and the nurse looked it over and
drew some lines around the rash she saw there on Molly’s left butt cheek and in
towards her anus. After a little while, the rash had spread past the lines up
toward the front and a little on the right butt cheek and the nurse called in
the infectious diseases team and the surgical team to check it out. Molly
didn’t want them looking at the rash out on the bed but let them look at it in
the privacy of the bathroom (what a mature little girl!). Daddy had come back
from the meet by then and they told him that this rash is a <a href="http://www.cdc.gov/Features/NecrotizingFasciitis/index.html" target="_blank">necrotizing fasciitis</a> (flesh-eating infection) and they need to perform a biopsy to find
out if it’s a bacterial or fungal infection. The rash was painful and Molly
couldn’t walk or even sit up without needing Daddy to support her.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After the biopsy, Daddy called me and told me that they
confirmed the rash is a bacterial infection caused by the bacteria Pseudomonas,
and gave us a couple options for what we could do at this point. They said they
could take her in to surgery right away, perform a debridement (removal) of the
infected tissue, and cover the wound with a <a href="http://www.wisegeek.org/what-is-a-wound-vac.htm" target="_blank">wound VAC</a> until her immune system
is back at which point they will do a skin graft to cover the area. They said
this option presents many serious risks as her immune system is nonexistent and
if there were any complications she would almost surely die. The second option
was to wake her up from the biopsy sedation, make her very comfortable with
morphine, and let us have some time with her until the bacteria took her life,
which they said would happen later that night. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I almost died when I heard the second option. I couldn’t
believe that my baby could die that night. I told Daddy that obviously we have
to do the surgery. We can’t not try to save her. He agreed with me, saying if
we didn’t try, then we’d hate ourselves for the rest of our lives. So he told
the surgeons to start the surgery, and I packed Big Sis and Little Brother up
to drive down to the hospital. While I was getting the bags ready, I got a text
from Daddy saying they were finished with the surgery and I should go down
there now. I got really scared at that message, because it didn’t seem like the
surgery took long enough, and that must mean there was nothing they could do
about the infection. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To be continued...<a href="http://mollyscancerblog.blogspot.com/2015/03/surgery-for-necrotizing-fasciitis.html" target="_blank">here</a></div>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-67885269460774979152015-03-25T16:55:00.000-07:002015-04-06T11:22:24.156-07:00Awesome SupportersI know everyone wants some more detailed updates on how Molly is doing, but I cannot let this post go waiting any longer. It has been on my mind for the last few months, and I have been putting it off because I didn't know if I could find the right words to express our appreciation for the love and support we've been shown in the last 2 1/2 years.<br />
<br />
We wish we were the ones giving of our time and resources to help someone in need, but as circumstances are not in our favor, we have been, and will be for some time longer, in a position to ask for help from those who are close to us and from those who might not know us that well. Though we would love to be able to handle our problems ourselves, we've come to realize we cannot and it has humbled us quite a bit.<br />
<br />
So we'd like to take a moment to thank everyone who has given of themselves to Molly's cause. We would definitely not be able to make it through without you. It means a ton (or perhaps a billion tons!) to us, and someday we hope we can reciprocate somehow.<br />
<br />
Here's a list of those who deserve extra happiness because of the things they've done for us. As this is very overdue, I will list those most recent and at the front of my mind, and as I think of names I will write them down and add them to the list when I get a spare moment. If you are on the list and wish to be removed (we respect your privacy), please let me know and I will honor your request.<br />
<br />
Wayne & Jayne S.<br />
Dean & Lenore M.<br />
Lamont & Marion S.<br />
James C.<br />
Earl & Linda M. <br />
Ann L.<br />
Lowell M.<br />
Dewey & Helen F.<br />
All of Molly's aunts & uncles<br />
Ryan & Ashlyn T.<br />
McKenna M.<br />
Ethan M. <br />
Jordan M.<br />
Timothy & Christina S.<br />
Mac & Rosi M.<br />
Annette H. <br />
Kara W.<br />
Kristian & Cindy M.<br />
Carrie R. <br />
<br />
Peggy J.<br />
Randy & Amy H.<br />
Ron R.<br />
Daelen M.<br />
The members of WDPB<br />
Ashley P.<br />
Ashley M.<br />
Christina T.<br />
Melissa G.<br />
Baden & Julie H.<br />
Andorisann M.<br />
Wayne K.<br />
The medical personnel at PCH<br />
The medical personnel at IHC HomeCare<br />
<br />
Mike & Laurie T.<br />
Tina C.<br />
<div>
Janelle and Rich D.</div>
<div>
Teresa and Mike V.</div>
<div>
Kristina Y.</div>
<div>
Tammy and Gregg G.</div>
<div>
Liz and Justin C.</div>
<div>
Donna S.</div>
<div>
Erin and Stew C.</div>
<div>
Kevin and Brenda T.</div>
<div>
Jennie D.</div>
<div>
Frank N.</div>
<div>
Ginger R.</div>
<div>
Shawna and Mila F.</div>
<div>
Sharynn and Jon F.</div>
<div>
Clare V.</div>
<div>
Jamie L.</div>
<div>
Kearsti H.</div>
<div>
Pat T.</div>
<div>
Deb and Vince G.</div>
<div>
Cassi and Justin E.</div>
<div>
Becky R.</div>
<div>
Ingrid K.</div>
<div>
Lael W.</div>
<div>
Janise W.</div>
<div>
Nicole and Jason S.</div>
<div>
Maggie E.</div>
<div>
Aaron S.</div>
<div>
Hemanshu</div>
<div>
Tiffanie L.</div>
<div>
Singh</div>
<div>
Nikhil M.</div>
<div>
Patricia A.</div>
<div>
Jon W.</div>
<div>
Anthony P.</div>
<div>
Samuel F.</div>
<div>
Natalie S.</div>
<div>
Amanda V.</div>
<div>
Ted O.</div>
<div>
Marco A.</div>
<div>
</div>
<div>
Cydnee F.</div>
<div>
Jordan R. </div>
Raquel P.<br />
<br />
<br />Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-25234719944264916212015-03-16T16:59:00.000-07:002015-03-16T17:00:21.127-07:00Halfway through the first treatment blockMolly is at day 14 of 28, and a few things have been complicating matters.<br />
<br />
We started off the month pretty well, but soon Molly needed more platelets and red blood cells. She has been on pretty high doses of steroids, but hasn't been eating or drinking very well, so she's been connected to IV fluids most of the time and has lost about 7 lbs. We had a feeding tube pushed down her nose to help with her nutrition today. After receiving blood a few days ago, Molly got a fever and the blood cultures came back that she had a bacterial infection somewhere in her body. So they started her on an antibacterial for that. She's also taking an antifungal and an antibiotic. <br />
<br />
Somewhere around day 10 Molly's blast count went down to 0, so that was a bright spot on this dark canvas we've been looking at. Her ANC has remained at 0 though, so we're not even close to getting to go home. <br />
<br />
Sometime in the first few days, Molly started having some pretty bad abdominal pain, which was assumed to be constipation from the steroids. So we started giving her stool softener. After a few days her stool was very soft but the pain was not gone, so we stopped the stool softener. A couple days more and the pain was still there, so Molly got an ultrasound of her belly and they found her intestines were pretty blocked up, so they started stool softener again. After a couple days the pain was getting worse so they did a CT scan and found that Molly's small intestines were telescoping into her large intestines, which is called intussusception. This is usually something that happens in infants younger than 1 year old, and it is considered an emergency. The usual treatment for intussusception is to perform an air enema (called air reduction by the doctors) to blow the blockage straight again. Molly has received three of these procedures, one without sedation (absolute awful experience), and two with amnesia sedation, but the condition has presented itself again each time. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsEG3LZ-da3UedNuricxGx21XCa_eADGGSGAy8-7OLcpFPbEXEwwXIBhpGYi6Ud9FuYAQZgm6YlCFJGFSKk9hwbX2AnI592JaXrpvIkeU2WDVBGmSKNgOP4yTvpsVBpY6pQwH03rDoQs9g/s1600/2015-03-16+12.18.47.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsEG3LZ-da3UedNuricxGx21XCa_eADGGSGAy8-7OLcpFPbEXEwwXIBhpGYi6Ud9FuYAQZgm6YlCFJGFSKk9hwbX2AnI592JaXrpvIkeU2WDVBGmSKNgOP4yTvpsVBpY6pQwH03rDoQs9g/s1600/2015-03-16+12.18.47.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly is upset that I won't take the feeding tube out.</td></tr>
</tbody></table>
<br />
<br />
The oncologist and surgeon talked it over and determined that, with Molly's ANC so low, surgery right now to remove the telescoping portion of her intestines would be a bad idea, as she wouldn't heal very fast and would almost surely get an infection that could do her in. The radiology department generally only does up to 3 air reductions before sending the patient to surgery, but since Molly is in such an immune compromised state the oncologist and surgeon is asking them to bend the rules a little and do more air reductions so we can wait to perform the surgery for another week or so until Molly's counts are higher. In the meantime we'll be managing her pain with morphine and giving her IV nutrition so that her digestive system can have a break and hopefully the intussusception will not get worse. The risk of doing air reduction is the possibility of the air perforating her intestines and then she will have to go to surgery in an emergency situation, which is even more risky than a controlled surgery situation.<br />
<br />
As far as chemotherapy, Molly will be getting the rest of the dexamethasone and vincristine as planned, but they will hold the PEG because it lowers the ANC and they don't want that to be lowered at all so we can get her into surgery as soon as possible. <br />
<br />
Many people have asked if they can help us out in any way. The only ways I can think that we need more help in is money and energy. We really appreciate donations for her treatment. We also really need everyone to send positive energy out to the universe for Molly, whether it be imagining her well again, prayer, meditation, affirmations, whatever. And we thank you for asking if you can help.<br />
<br />
I have talked to Molly about the possibility of her body not being strong enough to get better, and about the idea of a heaven and the family that we already have there. She may not understand it very well, but I want her to know that if it is her time to go, she has my permission. But we are not going to stop trying to help her body heal as long as we can. I can't imagine a life without her, and I have visions of years in the future when she becomes an aunt, travels the world, finds love, finds her life's calling, possibly has children, and she has such a wonderful life to live. I will never give up on her.Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com2tag:blogger.com,1999:blog-5112388111806592275.post-72402475830588922012015-03-06T10:25:00.000-08:002015-03-26T10:46:27.214-07:00Molly's Relapse Bone Marrow Transplant Chemo Treatment Schedule (updated periodically as we go along)Molly's Bone Marrow Transplant Conditioning Regimen (Protocol AALL0932)<br />
<i>(Intermediate-Risk Non-T cell Isolated-Marrow ALL Early-Relapse (18+ months after first diagnosis, within 6 months of end of therapy))</i><br />
<br />
After visiting with the oncologists and the transplant specialists, we have an idea of what we're in for. There is no certainty that things will go one way or the other, and we have a few paths that we could end up taking, but we're wishing, hoping, praying, and working for the best.<br />
<br />
The possible protocol below does not include prophylactic medications or medications to help with side-effects.<br />
<br />
If all goes splendidly, and Molly has a good remission (<0.1% blasts in marrow) at 28 days of Block 1, this is what we expect will happen:<br />
<br />
<ul>
<li><u>Block 1: Remission Induction</u>. The goal of induction therapy is to bring the disease into remission.
Remission is when the patient's blood counts return to normal and bone
marrow samples show no sign of disease. 28 days long. Because of higher doses, neutrophils, platelets, and blood counts are expected to stay very low during the first few weeks. Hospitalization is required until counts are staying up, about 3-5 weeks.<br /><ul>
<li>2x/day chemo steroids on days 1-5 and 15-19 by mouth (dexamethasone) (<i>Side
effects: increased appetite, insomnia, irritability, water retention in
face and other possible areas of body, weakness, increased stomach acid</i>)</li>
<li>2x/block chemo drug on days 1-2 through port implant over 30 minutes (mitoxantrone) <i>(Side effects: bladder pain, mouth sores, dizziness, weakness, stomach pain, low blood counts)</i> </li>
<li>1x/week chemo drug on days 1, 8, 15, & 22 through the port implant (vincristine) (<i>Side effects: hair loss</i>)</li>
<li>1x/block chemo drug on days 3 & 17 through the port implant over 2 hours (peg-aspargase) (<i>Side effects: nausea, weakness, poor appetite, stomach pain</i>)</li>
<li>2x/block prophylactic central nervous system (CNS) chemo drug on days 1 & 8 via lumbar puncture (methotrexate) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>)</li>
</ul>
</li>
</ul>
<br />
<ul>
<li><u>Block 2: Consolidation</u>. The goal of consolidation therapy is to reduce the number of disease
cells left in the body. The drugs and doses used during consolidation
therapy depend on the patient's risk factors. 28 days long. There are a couple of chemo administrations that require up to a week's hospitalization at a time (days 8-11, 15-20 probably).<br /><ul>
<li>2x/day chemo steroids on days 1-5 by mouth (dexamethasone) (<i>Side
effects: increased appetite, insomnia, irritability, water retention in
face and other possible areas of body, weakness, increased stomach acid</i>)</li>
<li>1x/block chemo drug on day 1 through the port implant (vincristine) (<i>Side effects: hair loss</i>)</li>
<li>1x/block chemo drug on day 9 or 10 through the port implant over 2 hours (peg-aspargase) (<i>Side effects: nausea, weakness, poor appetite, stomach pain</i>)</li>
<li>1x/block prophylactic central nervous system (CNS) chemo drug on day 8 via lumbar puncture (methotrexate) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>)</li>
<li>1x/block chemo drug on day 8 through the port implant over 36 hours (methotrexate) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>)</li>
<li>1x/day chemo drug on days 15-19 through the port implant over 30 minutes (cyclophosphamide) <i>(Side effects: cough, fever, elevated heartbeat, painful urination, weakness)</i> </li>
<li>1x/day chemo drug on days 15-19 through the port implant over 2 hours (etoposide)<i> (Side Effects: chills, cough, fever, mouth sores, low blood counts)</i></li>
</ul>
</li>
</ul>
<br />
<ul>
<li><u>Total Body Irradiation (TBI)</u>. TBI can reach cancer cells in scar tissue, the brain and spine where
chemotherapy may not reach as well. However, the dose of radiation must
be low enough so the body's healthy cells can recover. For this reason,
TBI alone cannot be used to destroy large numbers of cancer cells.<br /><ul>
<li>TBI treatment is given in the week immediately before transplant, and will be done at the Huntsman Caner Institute. Each treatment session will last 30-60 minutes, and it is unknown at this time how many treatments will be given.</li>
</ul>
</li>
</ul>
<br />
<ul>
<li><u>Bone Marrow Transplant (BMT)</u>. The chemotherapy and TBI destroys the bone marrow, and a donor's bone marrow is transplanted into the host to become a new immune system that can recognize and destroy the cancer cells.<br /><ul>
<li>Transplant day is called "day 0" and every day after that will be +1, +2, +3, etc. Around day +3, mouth sores (mucousitis) occurs, and IV nutrition or tube feeding will need to happen. The mouth sores are expected to clear up around day +15.</li>
<li>Engraftment usually happens by day +30. This is when the new stem cells start to grow and make new blood cells. An ANC of 500 or more for 3 days in a row is an indicator of engraftment. Because of a high risk of infection, hospitalization is common for about 5 weeks post transplant, or until lab counts recover. </li>
<li>In the first 3 months, the risk of fatal infections is still very high so the patient must adhere to strict medicinal regimens, avoid leaving home, and keep up with hygiene. </li>
<li>Immune suppressants are given for about 9 months afterwards, and it is strongly recommended that those who receive a BMT not attend school or go on vacations for 1 year post transplant. </li>
</ul>
</li>
</ul>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com1tag:blogger.com,1999:blog-5112388111806592275.post-62596596689742446712015-03-05T07:48:00.000-08:002015-03-05T07:48:47.341-08:00Relapse<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
First off, I'd like to apologize to everyone for not
updating this blog in the last year. As they say, no news is good
news, right? We've been living such a normal life that it was very easy to
forget about the cancer except for when we had monthly clinic appointments and
the occasional lumbar puncture. We had even moved apartments and baby brother
joined the family in early January. Molly has been enjoying a relaxed life like
any 4 year old should, even with the daily 6MP pills. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEichC1Gqw1vKbMLiurOh2ObjhbeGk9qO-WpZmY6yjevcTeuNiS1Dhl-mne_L8X6Fb35Dz6Cb3WXMJQ9NHOexy8JK7ZHyW0i4BECm9nyPn5CZLi-dKRQhVGt-IBuygp12w8_FH4owG-uA16r/s1600/2014-12-30+09.10.25.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEichC1Gqw1vKbMLiurOh2ObjhbeGk9qO-WpZmY6yjevcTeuNiS1Dhl-mne_L8X6Fb35Dz6Cb3WXMJQ9NHOexy8JK7ZHyW0i4BECm9nyPn5CZLi-dKRQhVGt-IBuygp12w8_FH4owG-uA16r/s1600/2014-12-30+09.10.25.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At one of the most recent visits we've had in the last year</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="MsoNormal">
On Sunday February 8th, we noticed Molly was a little weak
and she told us her tummy hurts. We checked her temperature, which ended up
being in the 102-103 range. Daddy took Molly up to the closest ER where they
brought her temperature down, gave her fluids through her port IV, administered
a 24hr antibiotic, and diagnosed her with the flu. She came home Monday morning
with a prescription for tamiflu and that was that. Except it wasn't really just
that.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On Tuesday morning, her fever was still high, and since the
24 hrs for the last antibiotic had elapsed, Daddy took Molly down to Primary
Children's (they do a better job with port accesses there) where they drew
labs, gave more antibiotics,<span style="mso-spacerun: yes;"> </span>and sent
her home before lunch. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were getting dinner ready that night, when Daddy got a
phone call. He never gets calls at night. It was the oncologist,<span style="mso-spacerun: yes;"> </span>who told us that they found blasts in her
blood smear, which indicates her leukemia had relapsed. After explaining
everything to each of us on the phone, he scheduled Molly in for the next day
for a bone marrow aspirate, and to be admitted to the ICS to start the process
for relapse chemo.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Daddy took Molly back to PCH (they changed their name from
Primary Children's Medical Center sometime in the last year) on Wednesday
morning where they did the lumbar puncture and admitted her in a room with a
nice view of the parking garage. I got Grandma to come down with me that
afternoon so they could watch Baby Brother while I went into Molly's room to
get the nitty gritty details from the oncologist. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The oncologist presented us with a protocol that was studied
in the UK about 5 years ago that showed a good chance for a second remission in
ALL patients. That includes a bone marrow transplant in a few months. We were
hesitant about starting her up on heavy toxins right away again, so we asked
for a couple weeks off chemo to see if we could improve her condition at all
with every natural therapy we knew of (we know an herbalist, a naturopath, an
experienced essential oils consultant, and a homeopath, so we felt prepared).
The oncologist was very reluctant to delay treatment at all, and made the risks
very clear to us, but relented as long as we let the home care nurse come by
daily to draw labs. He also mentioned that if it weren't for the flu, we
wouldn't have caught the relapse for another two weeks anyway, and she probably
wouldn't have been any worse off then. So on Saturday, 3 days after arriving,
Molly came home and we began giving her herbal supplements, freshly juiced vegetables,
homeopathic remedies,<span style="mso-spacerun: yes;"> </span>and specific
vitamin supplements. Before she came home we purged our pantry and fridge of
all sugar, processed foods, grain products, and dairy products. We had tons of
room left for fresh organic produce, and some very few packaged items. It is a
big change we've made, but we're committed to not just healing Molly, but the
rest of us as well.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Things were going fine with everything at home, and Molly's
labs were pretty steady. She was in very good spirits and her energy and appetite
were rising every day. After about two weeks we had an in-clinic appointment
and the oncologist explained a few more things about her labs, such as how to
calculate blast counts and see the trend over a week or so. Molly was very
social with the oncologist and the nurses and we were all encouraged by the
visit. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Back at home things were running smoothly,<span style="mso-spacerun: yes;"> </span>until Friday when Molly needed her port
reaccessed. We de-accessed it after her morning antibiotic dose so she could
have a bath, but then the water wasn't the exact right temperature,<span style="mso-spacerun: yes;"> </span>so she wasn't happy about that. She settled
down after her bath, but the the home care nurse came over to access her port
and Molly had another meltdown, which didn't help the nurse at all. We ended up
calling another nurse out, who was able to access the port just in time for the
afternoon dose of antibiotics. That night Molly was still very upset, and
complained all night of a stomach ache. We called the nurse to get her lab
counts, and her blasts had risen again. So we talked it over with everyone and
decided to start chemo on Wednesday, with a platelet and blood transfusion on
Monday morning.</div>
<div class="MsoNormal">
<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">Chillin' in bed with videos on the red tablet</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Molly was a couch potato the whole weekend, and Sunday night
we were concerned enough about her lack of physical activity that we
decided we'd let the oncologist admit her to inpatient and start chemo when we
were there on Monday. On Monday morning I took Molly in to the clinic to get set up
with platelets and blood, and the oncologist agreed that we should admit her that day,
with the plan to hydrate her overnight, let the blood and platelets settle, and
start her on chemo first thing in the morning. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiVwx2eidC139xIBk5NASZGhW9UXXDcKNUV_LKNb-U2MGJFSVdSAWnhwtARbWc_jGj27ttEUhQOe_pEQo-ISd9J9xwgg-apXsDZYmXV2_lIca6jfb8f92Ud_0AL75luICe_A7i3aGREsbI/s1600/2015-03-02+09.34.36.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiVwx2eidC139xIBk5NASZGhW9UXXDcKNUV_LKNb-U2MGJFSVdSAWnhwtARbWc_jGj27ttEUhQOe_pEQo-ISd9J9xwgg-apXsDZYmXV2_lIca6jfb8f92Ud_0AL75luICe_A7i3aGREsbI/s1600/2015-03-02+09.34.36.jpg" height="320" width="229" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She was rather upset that there was someone already in the restroom when she needed to use it</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">She cheered up after a bit though!</td></tr>
</tbody></table>
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixxFYs9F5Bq2DpJlx7EAAKoV1WkUHVC-aVIZIhCAmb4Sv6_m1R_wpyFL9ju67g8A-CR3mA1Xx09P5R6XGAkBa9Vs1KqtcbwCrSMkRGwROajYItq6LecdJOQRxjxmTbzBsQkuq2V7WNa8b7/s1600/2015-03-02+14.59.32.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixxFYs9F5Bq2DpJlx7EAAKoV1WkUHVC-aVIZIhCAmb4Sv6_m1R_wpyFL9ju67g8A-CR3mA1Xx09P5R6XGAkBa9Vs1KqtcbwCrSMkRGwROajYItq6LecdJOQRxjxmTbzBsQkuq2V7WNa8b7/s1600/2015-03-02+14.59.32.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly wanted to make sure everyone knew we belonged to her</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
So that's the plan. Relapse
chemo protocol began Tuesday, March 3, 2015. We are in contact with the
alternative medicine people we know as well as with the hospital's integrative
medicine staff to see what natural therapies we can also use to increase her
chance of success and decrease any adverse effects of the chemo. Updated treatment schedule coming soon.</div>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com2tag:blogger.com,1999:blog-5112388111806592275.post-39903311992696783062013-11-10T21:04:00.000-08:002013-11-10T21:04:12.934-08:00Maintenance, round 1 of 8Hey! We're in Maintenance! <br />
<br />
On August 14th Molly had a lumbar puncture scheduled for methotrexate, and also vincristine into her port. It was pretty routine. I am looking forward to these routine visits! It's going to be good!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfTy6vkjqXQFIjxfhLogIulPsseREWFgQwKXOGRCeFj7GbEP5a8PXlv3zIOqySXDebWuGfXOyLVJCIWt-tPcmQjbzoJ6R92ju7KLCmoJFLoHj4e_Q_py322EGwMsc9ueWgc6sHpr3pY1KM/s1600/20130814_103804.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfTy6vkjqXQFIjxfhLogIulPsseREWFgQwKXOGRCeFj7GbEP5a8PXlv3zIOqySXDebWuGfXOyLVJCIWt-tPcmQjbzoJ6R92ju7KLCmoJFLoHj4e_Q_py322EGwMsc9ueWgc6sHpr3pY1KM/s320/20130814_103804.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's a good clinic visit! Two thumbs-up!</td></tr>
</tbody></table>
At home we gave Molly the steroids (dexamethasone) for 5 days (she tolerated that pretty well, no big fits were thrown), and we also gave her mercaptopurine every night and methotrexate every Thursday night (except the first week, since she got methotrexate into her back at the clinic). Of course we are still giving her the prophylactic antibiotic Septra every Monday and Tuesday. Sometimes I get asked by a family member or friend what treatments Molly is on, and I give them the list, and they are shocked a little at how I am able to keep them all straight. Well, I've gotten quite used to it I guess. That's how. These medications are like our family members now...they are always there and we treat them like we love them, even though sometimes they can be a pain in the rear end!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihm6YpJ3w5L7Drtyl2Ot5bbI6RF7FxFG0h586BH4GKX_RXxLmFvvviqPue8nkt_528PcwywPZIEE1gbqrvz1SUdnCmP54lLSznhEevrInk3ElD5zax3s23KHK9rVHWhqJO7ZA6f5DOSaor/s1600/DSC01079.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihm6YpJ3w5L7Drtyl2Ot5bbI6RF7FxFG0h586BH4GKX_RXxLmFvvviqPue8nkt_528PcwywPZIEE1gbqrvz1SUdnCmP54lLSznhEevrInk3ElD5zax3s23KHK9rVHWhqJO7ZA6f5DOSaor/s320/DSC01079.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love watching this kid sleep! Almost as much as when she's awake!</td></tr>
</tbody></table>
<br />
On September 11th and October 9th Molly had clinic appointments just to go in and have labs drawn and get vincristine into her port. Those also went very very well. The lab results keep coming back great and there's no need for transfusions or anything. At the September visit, the doctor had us test Molly's stool again for C. Diff. It was positive. So we had to do a round of Vancomycin to try to rid her of the problem. I have also been giving Molly certain probiotics that is supposed to help a lot with this antibiotic-caused bacteria in her intestines. We've tested again recently and it has not gone away yet. We do not qualify for the research study that is going on right now for a more potent medicine because Molly's C. Diff. symptoms are relatively mild, so we'll just keep on giving her the probiotics until she's off any antibiotics and hope that we can knock it out then with one of the lesser potent drugs.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM0IEP7azbzUD-OYmZ-FepA_2LdnZZTEcUSSyAwe4H3pRcg8d89AcW-wDxFTrgv1mJxSw7Jti1Edl0wcmAkmkThqlKC5sNev_ZJnMgmywnaBQMOVWDbRuHlqA6eM9-ZfagfqrHF_h5j9Co/s1600/DSC01235.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div>
In mid-October we participated in the LLS Light the Night cancer walk. One of Molly's awesome great-aunts helped us get a team together and basically did all the work for us! All we had to do was show up! That was a fantastic night, and it wasn't even that cold...We had a ton of fun though.<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI7YYbPRrgb0ff1gaVtc1JfFyEg8LOYaMlet6mb4Wv5M5CZM-p5nNG8BTmutF8ypqUOGfdJs1RabrfDWZSGv3Z9IjoQNDgYSR7y0duIFEKTvhVwhVkhiWaR7_9ncQBBTWbft1FT4JK_oeJ/s1600/DSC01213.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI7YYbPRrgb0ff1gaVtc1JfFyEg8LOYaMlet6mb4Wv5M5CZM-p5nNG8BTmutF8ypqUOGfdJs1RabrfDWZSGv3Z9IjoQNDgYSR7y0duIFEKTvhVwhVkhiWaR7_9ncQBBTWbft1FT4JK_oeJ/s320/DSC01213.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Light the Night team. Molly's Minions.</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6cWo_6_kvg1z0n9Ek-Treur9SkLqHaibwOcHPREvrR-Awpr7VnZ_cBF6rTAWCeWwsGRE5djZtTkNkQzw7ZEvJkN1bjyp0XYGCy1-d2FAORTcwxZPEzj_5AnsDLm5bfANToA6qePhM38U-/s1600/DSC01235.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6cWo_6_kvg1z0n9Ek-Treur9SkLqHaibwOcHPREvrR-Awpr7VnZ_cBF6rTAWCeWwsGRE5djZtTkNkQzw7ZEvJkN1bjyp0XYGCy1-d2FAORTcwxZPEzj_5AnsDLm5bfANToA6qePhM38U-/s320/DSC01235.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big Sis the Purple Monster and Molly the Ladybug (and some random old lady in gym shorts...)</td></tr>
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Every 12 weeks is the start of a new maintenance round. I'll try to update the blog at each new round, unless something big changes, it which case you'll hear from me earlier (pray that doesn't happen...). Life is settling down and we are able to get into regular routines that keep us busy, so updating the blog is now something I have to schedule, rather than just do when I am bored.<br />
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com6tag:blogger.com,1999:blog-5112388111806592275.post-67372145632798403432013-08-18T18:47:00.000-07:002013-08-18T18:47:26.675-07:00Interim Maintenance 2 Clinic VisitsOn Wednesday June 19th, We had the first clinic visit of the 2nd Interim Maintenance phase. Molly had to have a lumbar puncture in the RTU for this visit, so she had to skip breakfast that morning, which is one of her least favorite things to do. To make it easier on her, we have Big Sis sleep over at Grandma's house the night before, and Mom and Dad get up early to eat breakfast before Molly wakes up. That way there's no food taunting Molly in the morning before we head out for the clinic appointment. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRmP5wUMPZ2cTPvVO9uY7vUnIYqCWFZwG0IomHYS3WbVdrzIuHGavRKarJpCQr2ISDbEqNDdaD_cq73YBABSNzzo8jTMTWaORk34zrHZ97YE5F8XOtgZ52NAFvgbtRz5OOMbaIczTItbb7/s1600/DSC00715.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRmP5wUMPZ2cTPvVO9uY7vUnIYqCWFZwG0IomHYS3WbVdrzIuHGavRKarJpCQr2ISDbEqNDdaD_cq73YBABSNzzo8jTMTWaORk34zrHZ97YE5F8XOtgZ52NAFvgbtRz5OOMbaIczTItbb7/s320/DSC00715.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly always gets to play on Mom's iPod when we go to the clinic. Her favorite game is Monkey Preschool Lunchbox.</td></tr>
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On Tuesday June 25th, Molly woke up with a fever. Of course Mom was extremely worried that we'd have to stay overnight at PCMC again, so she called the oncologist and asked if we could just go over to the local ER and have them do the blood tests and if something turns out positive then we'll head down to PCMC. Thankfully they said that was fine, and we spent most of the day at the local Emergency Room. The tests were all negative and we got to go home with instructions to monitor the fever and if it's still there in 24 hours then we go to PCMC. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicUvteprBaoH9vh8e-UkkDebAUQJrGbJ6GV_Jyq1Tvur5eOuCnxryIR3f_vTcSVia3lvN0NEA6rw-YJLKtX-H7hpxLN4L5G5ZcROlPcRjPdgCZqFTdOidSWskzjoeBwE51USF-0rTgx1XR/s1600/20130625_092456.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicUvteprBaoH9vh8e-UkkDebAUQJrGbJ6GV_Jyq1Tvur5eOuCnxryIR3f_vTcSVia3lvN0NEA6rw-YJLKtX-H7hpxLN4L5G5ZcROlPcRjPdgCZqFTdOidSWskzjoeBwE51USF-0rTgx1XR/s320/20130625_092456.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big Sis got to stay with Molly while we were at the ER for Molly's fever. Molly really liked having her there.</td></tr>
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That Friday, Molly had a scheduled clinic appointment that went really fast because she just needed methotrexate and vincristine into her port.<br />
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<tr><td class="tr-caption" style="text-align: center;">In the clinic rooms they have these neat toys attached to the walls that the kids can play with while waiting.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRmT1XLbXexG8JU7qopRtJv0ii4oS5HVVhvvsS7Vs2pz7i2EHn3n8361eluNcpy39WjlUPMORyqq8S5qXZ9riBumGYFD1ahaRxFgwOdwqafm_3H8tFIxhm3nw1jRFYW-KmXOc07MWXkWdg/s1600/20130628_101423.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRmT1XLbXexG8JU7qopRtJv0ii4oS5HVVhvvsS7Vs2pz7i2EHn3n8361eluNcpy39WjlUPMORyqq8S5qXZ9riBumGYFD1ahaRxFgwOdwqafm_3H8tFIxhm3nw1jRFYW-KmXOc07MWXkWdg/s320/20130628_101423.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Child Life specialists at PCMC are absolutely wonderful! They've gotten to know Molly so well, they always remember to have a baby doll ready for Molly to play with. I think Molly's aunt McKenna would be a wonderful child-life specialist, if that's something she wants to do.</td></tr>
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Our Independence Day celebrations were great...we went to the city park and they had bouncy houses there. Molly didn't go on them last year, but she braved them this year, and loved it!<br />
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Also, Molly has started learning her letters and sounds on the computer. Starfall.com is the same website Big Sis played on when she was little to help learn the letters and sounds, so she is usually right next to Molly helping her figure stuff out. <br />
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On July 8th we had another easy clinic visit, just like the last visit. We both really love these quick visits! We're pretty much in and out on these days.<br />
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<tr><td class="tr-caption" style="text-align: center;">Molly's so used to the blood pressure routine that she's to the point where she's telling the nurse what to do next, which buttons to push, and taking the cuff off before the nurse even notices that the machine is finished.</td></tr>
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July 17th was a no-food RTU lumbar puncture visit. When we do the RTU, I carry her into the procedure room when the anesthesiologist lets me know they are ready, and I sit her down on the bed and they hook up her port to an IV. Then they take a syringe filled with propofol, which is white in color, and hook it to her port through the IV line. She starts to feel the effects almost immediately and somehow knows that she'll be waking up shortly without Mommy, so she fights it a little. Then after she falls asleep fully, I go wait in the hall and about 30 minutes later a nurse comes out of the recovery room door and tells me that Molly is waking up and ready to see me. I go in and help her wake up more, we give her something to drink (usually apple juice) and maybe some chips, and then de-access her port. They send us home with instructions not to let her fall asleep in the car with her head down on her chest, and not to let her do any high-coordination activities for 24 hours. After our RTU visits, we usually go to the hospital cafeteria and grab a doughnut and some juice.<br />
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<tr><td class="tr-caption" style="text-align: center;">Sometimes Molly likes to sit on the bed in the clinic room, but usually she only wants to sit on Mom's lap the whole time.</td></tr>
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Friday July 26th was the last visit for this phase. The visit went so fast that I didn't get a chance to take any pictures! We got into the clinic room and almost immediately they came in to take her blood for their routine labs and then right after that the doctors came in to check her, and then while the doctors were in there the infusion nurses brought her chemo (methotrexate and vincristine) in and administered it right then and there! It was so fast we were out the door about 40 minutes after arriving. <br />
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We had almost 3 weeks off until our next appointment, which starts THE MAINTENANCE PHASE!!! The doctors told me that the only count-dependent part of the maintenance phase is the first visit, and then after that it doesn't matter how low her ANC counts go, we still plow through to the end. The only thing that can set us back is if her labs come back with something abnormal like her red blood cells and platelets suddenly drop. I don't think that's likely though, because she's been doing so well on her treatment so far. So here's to the next two years! I'll be updating after each visit (every 4 weeks) so watch for that! There will be another post very soon for the details on the visit we just had this week.<br />
<br />Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com4tag:blogger.com,1999:blog-5112388111806592275.post-20117837061647476782013-06-23T13:38:00.001-07:002013-06-23T13:40:14.694-07:00Delayed Intensification Part 2We made it through the whole Delayed Intensification phase!<br />
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On May 9th, Molly got a fever and she was admitted to PCMC for 3 days. She had wide blood pressure (to much distance between diastolic and systolic numbers) so she got to spend a night in the PICU, then another two nights after that in the ICS. Turns out this was also the day her head decided to let go of all her hair! By the time we got home Molly was left with only a fine peach fuzz all over her scalp, and a very bare spot on the back of her head where she rubs while asleep. This picture below shows it almost finished falling out. <br />
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May 22nd was a clinic visit for cyclophosphamide chemo through the port and methotrexate chemo through lumbar puncture. This visit was a week delayed from originally planned because Molly's counts were too low for chemo last week.<br />
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We got sent home from this visit with an at-home oral chemo called thioguanine and a port chemo called cytarabine. We had to give her oral chemo to her for 14 days consecutively, and port chemo every day for 4 days, the 3 days off, then 4 days on again. For the port chemo, I had to wear the chemo gloves and make sure that the girls didn't try to play with the syringes. All the used syringes and the gloves had to go into a special chemo waste bucket when we were done.<br />
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On June 5th Molly's labs showed counts that required a blood transfusion, so we went in the next day and spent the morning at PCMC refilling Molly's tank. She did very well with that and had no adverse reactions to the blood she received.<br />
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My laptop is in pieces right now, and so I am unable to access the pictures I transferred from my camera. Eventually I will be able to get the pics from this phase up and we can all enjoy the Molly-face even more!<br />
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Next we start with the Interim Maintenance II phase! Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-44317305809281262952013-05-08T16:04:00.000-07:002013-05-08T16:04:39.440-07:00Delayed Intensification Part 1<div class="separator" style="clear: both; text-align: center;">
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I can't believe we're almost done with the "intense" and "complicated" treatment! By almost, I mean we have another few months left, but the worst is behind us (as far as I can tell). Then we move into the very long Maintenance process (24 months long, assuming there's no hospitalizations and relapses).<br />
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Molly finished off the previous phase with no hang-ups. She was able to get through all the increased doses of methotrexate just fine without any mouth sores. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">This is what we do at clinic check-in. Weight, height, and blood pressure.</td></tr>
</tbody></table>
We are now almost to the half-way mark in the Delayed Intensification phase. The doctors tell us that this is the hardest phase for most children, next to the very first phase (remission induction) of course. We had 7 days on steroids, then 7 days off, then 7 days on again. That finished yesterday, and I am so looking forward to my Molly being happy again.The last time she was on steroids she got very chubby, very irritable, and craved tomato products (ketchup, spaghetti sauce, etc). This time around she didn't get as chubby, but she did get very irritable again and her craving is cheese products. All that cheese has made her poop soft like peanut butter, and she can't hold it in as well, so there's been quite a lot of frustration as far as that goes.<br />
<br />
Day 1 of this phase was a clinic visit. Molly had a lumbar puncture for methotrexate, and also vincristine and doxorubicin (a new chemo drug for her) into her port. That visit went very well, but it was an afternoon RTU appointment which meant that Molly had to go all morning without food and that made her very upset.<br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">Molly in the RTU recovery room after waking up from the anesthesia for her lumbar puncture.</td></tr>
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Day 3 I was in Vegas for a bagpipe competition, so Daddy got to take Molly in for an hour-long chemo infusion (pegaspargase) into her port. I hear that went well... they ate some hospital food and watched a movie while they were there.<br />
<br />
Day 8 & 15 were clinic visits. They were both quick visits with just vincristine and doxorubicin into her port. Her labs are coming back with good results every time we get them taken, so we're rather happy about that.<br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">This was taken in the infusion room where they push her chemo into her port.</td></tr>
</tbody></table>
We have an RTU appointment for Day 29 (May 15th) and then no clinic visits until Day 1 of the next phase, which is 29 days out again. This clinic visit coming up on the 15th is a count-dependent visit, which means that they have to take labs the day before and if her ANC count is too low then they will delay the visit a few days or until her counts come back up. Molly was a little pale yesterday (the nurses told me to expect that) but today she's got a little more color so if I had to guess, I would say her counts are improving and we'll be able to have the next appointment on the day we expect it. <br />
<br />
The oncologist keeps telling me that Molly is likely to be hospitalized for a fever or some other illness sometime before the end of this phase. I hope that is not the case, but I am prepared for it. I have a list of things I need for her hospital stays, which I'll share here in a second.<br />
<br />
Molly's losing her hair again! She's got a small bald spot on the top of her head, and a big bald spot on the back where her head rubs against her pillow while sleeping. I'm not sure how much she'll lose this time... we'll just have to wait and see.<br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">Molly's getting so independant! She got herself a bowl, poured herself some cereal, and brought the bowl and milk to me so I could pour the milk.</td></tr>
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<span style="font-size: small;"><b><u><span style="line-height: 115%;">Hospital 2< days overnight bag</span></u></b></span></div>
</div>
<u><span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br clear="all" style="mso-break-type: section-break; page-break-before: always;" />
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<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Molly:</b></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Pink blankie
and Frog blankie</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Tiger
stuffed animal</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Owl Light
and charger</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Change of
clothes</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Pajamas</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Extra
underwear, socks</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Pull-ups</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Wipes</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Comb</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Toothbrush</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Chapstick</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Books</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Puzzles</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
DVDs in
travel case</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
iPod and
charger</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Water cup</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Diffuser
& Oils</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Medications</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Stroller</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">Daddy/<i style="mso-bidi-font-style: normal;">Mommy</i>:</b></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Changes of
clothes, socks</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Sweater</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Scarf and
hat</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Laundry
Detergent</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i style="mso-bidi-font-style: normal;">Feminine Hygiene products</i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Toothbrush
and floss</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Ibuprofen</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i style="mso-bidi-font-style: normal;">Makeup</i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Face wipes</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i style="mso-bidi-font-style: normal;">Un-petroleum Jelly</i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Chapstick</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Comb, hair
ties, and mirror</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Hand lotion</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Hand
Sanitizer</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Nail
clippers and polish</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Phone and
charger</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Laptop and
USB drives</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Calendar</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Notebook and
pen</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Camera and
batteries</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i style="mso-bidi-font-style: normal;">Crochet/Knit project</i></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Reading
Material</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Headphones</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Snacks</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Gum/Mints</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Water cup
with straw</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Reusable
shopping bags</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Cash for
vending machines</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
P.S.
<br />
<br />
</div>
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Please comment if you have anything to say or if you have any additional questions about the post above you would like answered
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<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
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Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com5tag:blogger.com,1999:blog-5112388111806592275.post-59112933560752402512013-03-16T19:09:00.000-07:002013-06-23T13:41:34.427-07:00Interim Maintenance 1 Clinic VisitsI apologize for the big space between posts. It's been pretty busy here. I've been substituting on some paper routes (which happens at 1am, so my days are really groggy), and we're preparing to move to a bigger apartment 15 minutes northward (which will happen this weekend). Here's what happened since the last post:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtOPsYqdajt8bKw7U7y8HILRDYebkhE1XNNGbHCXovVVUaPMcLrRvAzZwllSEvjcFfFH7CGQOgB6gQNJr8PJ901xVyG8HxJFYHq6Z3m_gUNtRZ2qWujdn8zFom40ID0d0fn-mlbMwVlf98/s1600/DSC00014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtOPsYqdajt8bKw7U7y8HILRDYebkhE1XNNGbHCXovVVUaPMcLrRvAzZwllSEvjcFfFH7CGQOgB6gQNJr8PJ901xVyG8HxJFYHq6Z3m_gUNtRZ2qWujdn8zFom40ID0d0fn-mlbMwVlf98/s320/DSC00014.JPG" width="228" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly decided to explore the clinic room this time. She found out how the water works!</td></tr>
</tbody></table>
We finally got some good labs on February 19th, which let us go in to start the next round of chemo on the 20th. That was a total of 4 weeks delayed. I took Molly in and she did really good with everything. She remembered what to do when each doctor came in. The Child Services gal came in and Molly immediately asked for the baby doll and play doctor stuff to play with. The nurse came in to draw blood and Molly got her port cap ready for the nurse to clean. Then the Oncologist (the one that came to see us the very first night in the ER in November) came in and Molly immediately shrunk into herself and hung her head the whole time he checked her out (I don't think she likes him that much, though he's very very nice). After being checked out by the doctors, we went back to the infusion room and had vincristine and methotrexate pumped into Molly's port, and then got to go home!<br />
<br />
On March 1st we had another clinic appointment. Everything was just like the first visit of this phase, except they are raising the dose of methotrexate each visit. Molly doesn't really get any side effects from the medicine except for an incontinence issue we have for a couple days after each clinic visit. I asked the nurse about it and she said she can't think of any patient having that problem, so it may just be something that has to do with Molly reacting emotionally to the visits.<br />
<br />
March 11th was the next clinic visit. Same drill, same medicine, increased dose on methotrexate. One of the side effects of methotrexate is decreased appetite, but Molly has been eating pretty well so far. It's only about one meal a day that she doesn't want to really eat.<br />
<br />
Our next appointment is on March 21st. Molly has vincristine and methotrexate into her port again, and they are also going to do methotrexate into her spine with a lumbar puncture in the RTU. We've been spoiled the last few visits because they were so short, but this next visit will be around 4 hours long. <br />
<br />
Molly's hair was growing back, but now it's thinning out again because of the vincristine. We have two more clinic visits with vincristine doses this phase, and then looking forward 9 doses periodically between the middle of April to the middle of July. After that she's pretty much done with that drug and her hair can start to grow back. <br />
<br />
P.S.
<br />
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<div class="separator" style="clear: both; text-align: left;">
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Please comment if you have anything to say or if you have any additional questions about the post above you would like answered
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com3tag:blogger.com,1999:blog-5112388111806592275.post-22316660304510457592013-02-16T16:14:00.000-08:002013-02-16T16:14:05.173-08:00Quick update for the long delayThese last few weeks have been pretty relaxed at home, but stressed at the same time when you take into account the waiting we've been doing for Molly's ANC to reach a level high enough for her to (1) get off of antibiotics and (2) start chemo treatment again. As of Thursday afternoon, it was at 600, which is above the number it needed to be to stop the antibiotics and de-access her port. But it needs to be at 750 in order to start chemo again, so we're still waiting. The Home Care nurse is coming over on Tuesday morning to take blood for labs again, and we're crossing all our fingers and toes that the ANC will be high enough to start chemo treatment again.<br />
<br />
Normally I would be thrilled to have 4 weeks off from the weekly clinic visits, but this is hard on me because I am so worried that the cancer cells will have time to build up again and we'll have to start back at square one. Sigh, whatever happens, I just have to keep calm and carry on I suppose. There's no quitting for us.<br />
<br />
Me and Molly's Daddy watched the movie My Sister's Keeper (2009) last week and it kind of hit home with us. Not the part where they had another child to use as a donor to keep their daughter alive, but the part where the mother did all she had to and all she could to keep her daughter healthy as long as possible. If you haven't seen it yet, ignore the remainder of this paragraph; there be spoilers ahead. Anyway, if Molly gets to the point where she really would have a better life if we let the cancer take her in it's own time, I hope that I can let it and let her have a happy {however long she has left} instead of taking my efforts to cure her so far that she has to resort to planning her own death. And I hope that the point at which that situation might become true is very clear so we don't have to dance around it forever with feelings of guilt. <br />
<br />
<div style="text-align: left;">
P.S.</div>
<div style="text-align: left;">
</div>
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<div class="separator" style="clear: both; text-align: left;">
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Please comment if you have anything to say or if you have any additional questions about the post above you would like answered
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com1tag:blogger.com,1999:blog-5112388111806592275.post-70365614756076415412013-02-05T14:07:00.001-08:002013-02-05T14:07:55.244-08:00Postponing the next phaseWe got to go home from the hospital on Thursday January 31, but Molly's Absolute Neutrophil Count was still too low (300 - normal is about 1500 for cancer patients, and 3000 for healthy people) to take her off of the antibiotics, so she got sent home with her port accessed. She also had to take the medication for the c. diff. for another week. A low ANC means that she is at a very high risk of catching infectious diseases or getting an infection from open wounds.<br />
<br />
We were hoping her ANC would come up so we could de-access her port and stop giving the antibiotics (I think she might be getting a yeast problem because of the meds) but the labs from Monday (Feb 4th) showed that her ANC went even lower (100), so it is apparent that we'll be giving her the cefepime through her IV port 3 times a day for at least another week. The pharmacist that sends us the meds told me that he thinks her ANC bottomed out and it will be rising pretty quickly now. We have labs scheduled for next Tuesday, and that will tell us if we can discontinue the antibiotics and start the next phase of chemo. <br />
<br />
<div style="text-align: left;">
P.S.</div>
<div style="text-align: left;">
</div>
<div style="text-align: left;">
Our family and friends are such great people! We are astounded at the level of support you all have for us! Thank you so much! By the way, Daddy is recovering just fine from his abdominal surgery. He's still sore and can't get comfortable when we sit and watch TV, but he's back to sleeping normally. It'll still be a few weeks before he can help with carrying kids around, but that's OK because we can't go anywhere with Molly's ANC so low anyway.</div>
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<div style="text-align: left;">
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P.P.S.
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Please comment if you have anything to say or if you have any additional questions about the post above you would like answeredLeiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-63702904513092726842013-01-29T11:55:00.000-08:002013-01-29T11:55:00.295-08:00Hospitalized for RSV, C. diff., and PneumoniaOur clinic appointment for the next phase was scheduled for Wed, Jan 23rd, so we had the home health care nurse come over Tuesday morning to draw blood for labs. When the nurse comes over, she usually takes Molly's temperature, which ended up being 100.2 degrees that morning. She expresses concern for that and I said I would monitor it through the day to see if it got any worse. Molly had just that morning developed a runny nose and coughed occasionally, but I thought she had just caught the cold that I had the week before. That afternoon Big Sis had a dance class I needed to take her to, so I called Grandpa Dean to see if he would come sit with Molly since she was starting to look sick. I got back home with Big Sis at about 3pm, and took Molly's temperature again. It was at 101.4, so I called the clinic to see which ER they wanted me to take her to and they told me that if it was all the same to me I should take her to PCMC so that they could have all her records here at the same place. When Daddy got home at 6pm, I loaded Molly up in the car and headed down to PCMC with the expectation that they would give her a dose of antibiotic and send us home. I didn't even bring my purse, just my wallet, because I figured we wouldn't be gone for long.<br />
<br />
When we got to the ER, I told them that she has ALL and that she has a fever, and they brought her right back to a room where they would check her out. I suppose that is one bonus of being a leukemia patient... absolutely no ER waits! Anyway, we got back to the room and they put a blood oxygen monitor on her toe, which showed us that her percentage was in the 70's (should be higher than 80%) so they stuck an oxygen tube on her face and into her nose. She did NOT like that at all! It took her a good 2 hours to get used to it! They also did a quick blood draw from her port and did a nasal swab to test for a variety of diseases, which she didn't like at all either.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-H-yS3YZ9gS7dM1vJCaTfzfSM7eKcNgG5R2r7qFpHsJ8GSqDTA9gr3i7n6q9XuPNVLRKW0Knbv_41DCivNgiQjGTeGzPWZCBpqJ1kwuRD30vEODq-463CLCYKwMDS_cv6SHPCmnXnEcf/s1600/DSCF4795.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-H-yS3YZ9gS7dM1vJCaTfzfSM7eKcNgG5R2r7qFpHsJ8GSqDTA9gr3i7n6q9XuPNVLRKW0Knbv_41DCivNgiQjGTeGzPWZCBpqJ1kwuRD30vEODq-463CLCYKwMDS_cv6SHPCmnXnEcf/s320/DSCF4795.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly just got the oxygen tube put in. No likey.</td></tr>
</tbody></table>
<br />
After about 1 hour waiting in the ER exam room, the resident doctor came in and told me that since Molly had signs of an infectious disease she would be admitted and we'd be taken up to the Immuno-Compromised Services section (ICS - same place we stayed our first week of diagnoses). So I grabbed our coats and Molly's medication bag and we were taken to get a chest x-ray first and then up to ICS and put in a room that had a very good view of the valley. After about an half-hour in the room, the ICS resident came in and told me that Molly's nasal swab showed that she has indeed contracted RSV. She said that her labs showed that she isn't neutropenic (low white blood cells; causing very low ability to fight disease) so that was a good thing, but we'd be staying here for at least until the fever breaks. I asked her how long that would be and she said that most RSV patients start getting better around the 5th day after first showing signs of RSV, which was this day.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqOozIPiEKq8UdCYh6B1JAqJzIh0F9TUMLsklSc5VBItWMVfDtEUVZEj9nTpp9-OyuYRRSyS385w5qcLSeg40r1va74kxo3cu9kIsp_xXPoIgOSLh7C36MScQrYzWtaRdTKoWI5e3cmscR/s1600/20130127_085625.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqOozIPiEKq8UdCYh6B1JAqJzIh0F9TUMLsklSc5VBItWMVfDtEUVZEj9nTpp9-OyuYRRSyS385w5qcLSeg40r1va74kxo3cu9kIsp_xXPoIgOSLh7C36MScQrYzWtaRdTKoWI5e3cmscR/s400/20130127_085625.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's the view from our room. I'm definitely asking for this side of the ICS if we ever have to stay here again.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
So I started to try to get comfortable. I didn't have my phone charger or even any paper to doodle on, but we did have the Dr Seuss book Go, Dog, Go, so we read that a few times. That first night was tough because I couldn't use my phone and Molly was on an IV so she had to use the toilet every half-hour. Neither of us got very much sleep at all. <br />
<br />
The next day, Wednesday, Molly's fever was still in the 102 degree range, her heart rate was in the 150's, she was still on oxygen, her respiratory rate was in the 50's, and her blood pressure was high as well. We put her on an acetaminophen and ibuprofen regimen to keep the fever down. Only the ibuprofen worked, but we could only give that every 6 hours, so we gave acetaminophen at the 3 hour mark in between ibuprofen doses.<br />
<br />
Daddy was at home with Big Sis and they both developed stomach aches and diarrhea overnight, so Daddy decided to stay home from work. I had Grandpa Dean stop by and pick up my phone charger and a few other very essential items (my laptop for one, haha!) and drive them down here. The doctors here came in and confirmed that she had RSV and said that the chest x-ray from yesterday showed some splotches, so they suspect she's also got pneumonia and will be doing further tests for that. They put her on an antibiotic and also took a stool sample to see why she suddenly developed diarrhea. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcfTugHuubhSOGOOjv5-3prKn1Mz5sLaMGZWEurvjwBCnFq9cdozr1yr-ZtB4anj1-EVdaK8VkNdzOTWoc_jmn5OM1wIZW2g7fdauDcS3p66khksyf31k6E43vjKZofLGO1U2PkgIeFoq1/s1600/DSCF4819.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcfTugHuubhSOGOOjv5-3prKn1Mz5sLaMGZWEurvjwBCnFq9cdozr1yr-ZtB4anj1-EVdaK8VkNdzOTWoc_jmn5OM1wIZW2g7fdauDcS3p66khksyf31k6E43vjKZofLGO1U2PkgIeFoq1/s320/DSCF4819.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gotta try to be happy!</td></tr>
</tbody></table>
Later that afternoon, Daddy called me and told me that his stomach was hurting way too much and that his mom will be staying with Big Sis while his dad takes him to the ER at Davis Hospital. I immediately suspected appendicitis, since he had not had that yet. When he got back from the ER, he called and told me that the doctors there did a CAT scan and didn't find anything except for swollen lymph nodes, so they sent him home with some mild pain medication and instructions to just wait it out. He and Big Sis went back to his parents house for the night so they could help out with the pain. Apparently Big Sis got over her stomach ache pretty quickly, so we knew it was just a coincidence that they both had aches at the same time.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhycbfXs3vP31gGtFtvCIyYPqZjW0opANsUpM61BaMrKFnNmsD-PdJG4gE98oO0lR6p6Vbqh4XxLhXY54fLHpDpN7JDpjkFeZeppj9wxLuXFPABK6VuYu-2hCI9bMtpEzKS1jFpjSe4PMw3/s1600/20130125_184139.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhycbfXs3vP31gGtFtvCIyYPqZjW0opANsUpM61BaMrKFnNmsD-PdJG4gE98oO0lR6p6Vbqh4XxLhXY54fLHpDpN7JDpjkFeZeppj9wxLuXFPABK6VuYu-2hCI9bMtpEzKS1jFpjSe4PMw3/s320/20130125_184139.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly's Tree of Life</td></tr>
</tbody></table>
On Thursday, all of Molly's vital signs were the same as yesterday; elevated everything. She stopped eating any food so they put her on IV nutrition through her port. She had a blood transfusion just before going to bed last night, so today her color was very nice. They said that her stool sample showed that she had also developed clostridium difficile (C. diff.) which is a pretty common viral spore among hospital patients, and put her on Flagyl to specifically treat that. They also said that they'd put her on a second antibiotic that will help clear up whatever is causing the fever. <br />
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Since I was still wearing the same clothes I had arrived here in, I asked for some baby-sitters from my family to come down and sit with Molly while I went home to pack some more clothes and essentials, shower, and make sure the cat was OK. I also talked to my mom about some research I had done here on aromatherapy and she sent down her diffuser and some eucalyptus oil. I had to get permission from the doctors here to use it, and the Integrative Medicine Specialist said I could, but only during very specific times so as not to irritate the other patients here. The specific times were 3-5am and 3-5pm.<br />
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I went home to take care of things, and after 4 hours or so, I got back to the hospital and relieved Uncles Ethan and DJ from their duties, organized the hospital room, and tried to start making things comfortable since it was looking like we'd be here at least until Saturday.<br />
<br />
Daddy called me again around 8pm and said that he is still in so much pain that he is going to go to a different ER and see what they have to say. About an hour later, I was told that they were going down to McKay Dee hospital so they could do an emergency surgery on his abdomen. I didn't get many details past that, so all night I was worried that I wasn't going to see Daddy again. Molly also had a pretty rough night because of the fever and the fluids she was getting, and all the medications we had to wake her up for. I think it was very surprising that I was keeping my cool this whole time.<br />
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Friday morning, Molly's vitals were still the same as they had been, she was getting all the same med's they gave her yesterday, and I was so very tired from the lack of sleep. I found out early in the morning that Daddy was out of surgery and was recovering well. It turns out that he had an organ of sorts connected to his small intestine that a very small percentage of people have as adults called Meckel's Diverticulum. Apparently this thing is something all babies are born with, but it usually disappears soon after birth. His diverticulum was very inflamed and had to be removed. He said that he will be staying at Mckay Dee at least until Sunday.<br />
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That afternoon went just the same as it had been all week, and the fellow oncologist that we usually see in the clinic came to see us and explain that we will in fact be delaying the next phase of chemo for 1 week. So that means that she'll be starting the next phase on January 30th.<br />
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Saturday was still just like the other days. We did another CAT scan, and later Grandpa Wayne came over so I could visit Daddy in the other hospital, and so I could go see Big Sis and see how she was doing as well. The cat also got some attention. <br />
<br />
That night I had a little break-down and maybe scared the nurse a bit. I was crying about how I was worried that Molly wasn't getting any better and we were just making her worse with all the antibiotics and other medications we were forcing into her system. I know why I was so emotional though... I track my menstrual cycle and hormones very closely and this was one of the days I predicted would be a low-hormone day, which would make me depressed and tired for a couple days. I hope the nurses here don't think I'm a nut.<br />
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Sunday, yet again all vital signs were elevated. Daddy was discharged from the hospital in the early afternoon. I should mention what activity Molly has chosen to keep herself occupied during the day... Princess Merida in the movie Brave. I'd say we watch that movie probably 4 or 5 times a day here. She even has the verse that the witch says will break the spell on the queen memorized. So do I. "<i>Fate be changed. Look inside. Mend the bonds torn by pride.</i>" Tada! Oh, and I officially want the Brave soundtrack. I'm hooked on that music.<br />
<br />
The resident doctor here came in that afternoon and said that the newest CAT scan definitely showed that Molly has pneumonia, and I asked for her best guess on how long we could be here. She said that patients with leukemia usually stay for up to two weeks. So that's what I am expecting now... a very long hospital stay with nearly nothing productive in our normal life getting done. At least I have my laptop!<br />
<br />
Sunday night was the first night that we were able to keep Molly's temperature down long enough for her to sleep 4 hours at a time. We still had to wake her for medications and to check her blood pressure at midnight and 4am, but I'd say both she and I got very good rest that night!<br />
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<tr><td class="tr-caption" style="text-align: center;">Feeling a little better!</td></tr>
</tbody></table>
On Monday, things were looking the same in the morning, but everything took a turn for the better around noon. Her fever went down, I gave her a bath in the big bathtub here and when we got back and hooked her up to the monitor, they found her oxygen level was staying up so we didn't put the tube back in her nostrils. Grandma Jayne drove Daddy and Big Sis down here so Daddy could bring me one more change of clothes and the hair scissors, and we gave Molly a very extensive haircut. I think it looks absolutely adorable. I was afraid that she wouldn't look like herself, but in fact, the haircut makes her look even cuter, and her very distinct facial expressions are amplified a hundred-fold!<br />
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<br />
I talked to my mom about another essential oil that could help Molly get better, and she also gave me a homeopathic remedy to give her once or twice. The Integrative Medicine Specialist gave me information on how these additional treatments could help, and also how they could hurt. Armed with this information, I decided to go ahead and use the remedy and essential oils. Also, the Infectious Disease doctors came in and told me that in addition to RSV, they found that she additionally had Coronavirus. So that brings the total illnesses to four. Fun stuff. But she's finally getting better!<br />
<br />
Today, Tuesday, Molly is looking very well! Her temperature has been normal for more than 24 hours now. Her heart rate and respiratory rate are very close to normal. She did have to go back on oxygen overnight last night, but she's back off it now that she's awake. The resident doctor came in and told me that Molly is looking very good, and she expects we'll be able to be discharged in a couple days! That is by far much better than 2 weeks! So, all we have to do is get Molly to the point where she can go overnight without oxygen, and she needs to get her appetite back again. She hasn't eaten anything yet, and I keep trying to get her to drink PediaSure, but she still needs the nutritional fluids through her IV port. The oncologist says that we'll probably still start her on the next chemo phase (<a href="http://mollyscancerblog.blogspot.com/2012/12/mollys-chemo-treatment-schedule-updated.html" target="_blank">Interim Maintenance I</a>) tomorrow, but we'll likely delay the methotrexate portion of it 1 week just because of Molly's recent illnesses.<br />
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Well, that's that. You'll get another update probably in a week or two, after we've had another clinic visit and chemo treatment. Thanks for reading!<br />
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<div style="text-align: left;">
P.S.</div>
<div style="text-align: left;">
</div>
<div style="text-align: left;">
If you're wondering about how to donate to the Molly fund (we found out
our deductible was misleading and we actually have to pay almost $12,000
per year before the insurance covers anything), we have this nice
little yellow-orange button at the top-right of this blog page under Molly's picture that says
"Donate." We really really really appreciate everything that has been
donated so far, and the time given by several people taking care of a
few things for us. </div>
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<div class="section fn-group" id="fn-group-1" style="text-align: left;">
P.P.S.</div>
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<br />
Please comment if you have anything to say or if you have any additional questions about the post above you would like answered<br />Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-21530861692773507172013-01-12T22:02:00.000-08:002013-01-12T22:02:22.207-08:00Phase 2 Consolidation Clinic Visits<div style="margin: 0px auto 10px; text-align: center;">
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<div style="text-align: left;">
On Jan 2nd we were schedule to visit the clinic at 8am, and then have Molly's lumbar puncture done in the OR at 10am instead of in the RTU because the RTU was completely booked that day. So we get up at a very early hour, made sure Molly didn't eat or drink a thing, and drove up to PCMC. We had to visit the Operating Room check-in first and wait for 30 minutes to be "processed", along with several other children and their parents. Then they sent us back up to the clinic to have labs drawn. After labs, we went back down to the Pre-OR waiting room where they gave Molly some hospital jammies to wear and had me take out her earrings. We got taken back to the OR waiting area where they had several beds and chairs and TVs and some video games. Since I expected we'd only be there for a few minutes, I held Molly in my arms and sat in a rocking chair while she played on my phone. </div>
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Molly fell asleep eventually and the nurse there came to our chair and told me that they expect we'll be taken back at 11:15a. So we waited. And Molly woke up. And wanted juice. And wanted goldfish crackers. And cried. Because she couldn't have anything to eat until after the procedure. </div>
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<tr><td class="tr-caption" style="text-align: center;">I'm trying to be a happy mommy with a very unhappy Molly in the OR waiting room.</td></tr>
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It got to be 2pm and I finally went to the desk to ask when we were going to be brought back. Of course they didn't know, so they called several people and finally told me that there was one more person ahead of us, and asked if Molly needed to be given anti-anxiety medicine through her port because I couldn't go back with her; they would be carrying her back without me. Well I thought she'd be ok, and I didn't want them giving her any unnecessary drugs anyway. Around 3p, they took her back (and she cried so very much when I put her in the OR nurse's arms) and I went to the parent waiting area, where I waited for only about 40 minutes until they came and told me Molly was awake from anesthesia and I could go see her. </div>
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In the post-op recovery area, Molly was on her 3rd bottle of juice, and asking for more. They were so impressed with how thirsty she was (what did they expect? She had waited ALL day for something to drink!) and we were told we could leave as soon as they could figure out how to de-access her port. Seriously? These people see all kinds of patients everyday, and they took 20 minutes trying to "learn" how to take the needle out of her chest (which I had done before and tried to explain it to them myself). They also had to wait to find out what kind of anti-clogging medication to put in her port before taking the needle out (which I had in my bag right there, but they wouldn't listen to someone so unschooled as me). </div>
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<tr><td class="tr-caption" style="text-align: center;">Molly with her juice sippy they gave her in post-op.</td></tr>
</tbody></table>
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Needless to say, I was incredibly disappointed with the way everyone in the OR department handle everything. I hope I never have to go back there again.</div>
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_______________________________________<br />
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On Jan 9th, we were able to get a spot in the RTU. We had the clinic visit at 10:30a so Molly could have some juice at 9am, but I didn't have any juice to give her so I did some researching on liquid diets and ran across a forum for colonoscopies where I learned that if you take a light-colored jello that's not red and mix it as usual but don't refrigerate it, then it is a good substitute for apple juice or water. So I found way in the back of my cupboard some peach jello, and gave that to her. And the doctor at the clinic said that was fine. </div>
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This week at the clinic, the nurse came in to do the port poke and I had Molly laying down on the bed. I held both her hands as I usually do when they are going to do something she'll likely not enjoy, and she just sat there and watched them the whole time! No crying! The doctor and the nurse agreed that this was quite unusual and I should give seminars to parents on how to calm children down. I realized this week that I had created somewhat of a comfort routine with Molly; holding both her hands, and diverting her attention with songs, and questions about what Big Sis might be doing at grandma's house. </div>
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We learned that the RTU had a cancellation and so we got to go down early. Molly insisted on walking down the hall instead of riding in the stroller, so I let her. And the nurses all fell in love with Molly in her pigtails and footsie pajamas, waddling into the RTU. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8s9EXcrNzNCa-Pe0Yvh_8CkGrNZfG-PxWQOcuuXI7-GFmA3qTu9HJ7XNL1xAOsFq2v_c-RjczRPjor74MkuPeSq-vxhm1-czv9oBUAehHa4jlFdvL-nD9INsfF8minnCHJOlf9VVYriIU/s1600/20130109_114135.jpg" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8s9EXcrNzNCa-Pe0Yvh_8CkGrNZfG-PxWQOcuuXI7-GFmA3qTu9HJ7XNL1xAOsFq2v_c-RjczRPjor74MkuPeSq-vxhm1-czv9oBUAehHa4jlFdvL-nD9INsfF8minnCHJOlf9VVYriIU/s320/20130109_114135.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This week Molly is so much happier than last week!</td></tr>
</tbody></table>
<div style="text-align: left;">
While Molly was just waking up from the lumbar puncture this week, one of the nurses came in and expressed concern for a bruise she saw behind Molly's ear where her earring sits. I explained to the nurse that it wasn't a bruise, just a mark from the earring back because it probably has nickle in it. I told her it would wash right off, just like if you had a ring from the quarter machine which left a green mark around your finger. I also got a phone call a few days later from a very concerned oncologist himself who said I shouldn't let Molly sleep in her earrings because it looks like they are bruising her skull and he was worried about possible infection. I explained that it was just discoloration, and then went right over to Molly and took an alcohol pad to the "bruise" and it washed right off. Hopefully I don't get comments on that anymore, as I will try to keep it washed. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
We've got 2 weeks off from clinic visits before the next phase. I am still giving Molly Septra on Mondays and Tuesdays to prevent pneumonia, and I am giving her 6-MP (mercaptopurine) every night at least 1 hour after she eats dinner. All her lab results have been excellent, everything is very promising. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
We changed our diet, and Big Sis hates it. She doesn't like the whole wheat spaghetti (neither do we... so we're not having that again) and she doesn't like that she has to eat veggies now. Today we had turkey burgers and roasted organic summer squash. I think we all liked the turkey burgers even better than beef burgers! And I finally tried making rice and steaming broccoli at the same time in my rice cooker... that turned out too easy to fully express how pleased I am. </div>
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<br /></div>
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I am trying so hard to make this life more normal for myself and my family, but our homeschool and chores are falling behind, I get sad sometimes because I wonder if Molly is just going to die of cancer anyways, and I get sad because we were planning on buying a piano in 1 year, paying off all our debt in about 3 years, and building a house in 5 years, but those all have to be pushed back an unknown amount of years because of this ugly creature dancing with Molly. On my low days, I just want to lay in bed all day and exist without responsibility or desire. It's difficult. But I carry on.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
P.S.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
If you're wondering about how to donate to the Molly fund (we found out our deductible was misleading and we actually have to pay almost $12,000 per year before the insurance covers anything), we have this nice little yellow-orange button at the top-right of this blog page that says "Donate." We really really really appreciate everything that has been donated so far, and the time given by several people taking care of a few things for us. </div>
<div style="text-align: left;">
<br /></div>
<div class="section fn-group" id="fn-group-1" style="text-align: left;">
P.P.S.</div>
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Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.<br /></div>
</div>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-58863106517412883122012-12-26T16:54:00.001-08:002012-12-26T17:00:48.846-08:00Start of Phase 2: ConsolidationToday we went to visit the clinic after having a full week off of steroids and other chemo drugs. Molly is still taking septra twice a week to prevent a certain kind of pneumonia (yeah! Spelled THAT right the 1st time!), but other than that we have been drug free! Molly's mood and personality has done a complete 180 degree turn-around. It took about 3 days, but she is now the cheerful, playful, excitable toddler she used to be. I really couldn't remember her being so happy before... I had to go back and watch videos I took of her to see how she was before the cancer started this dance with her.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq5awui128J_4kOkAs3eg8ApvpnlTgzhmODd-9DS60iv3Cjth-ZeYYiPG76Y7XZg3CTqWyBDU29ryjI1Gdg5em1dzF0ghvJvIv72g7dF5ZE0GrMOcwS-hKLxh0wVb1Cl3m2GN7SIUKqRj_/s1600/DSCF4651.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq5awui128J_4kOkAs3eg8ApvpnlTgzhmODd-9DS60iv3Cjth-ZeYYiPG76Y7XZg3CTqWyBDU29ryjI1Gdg5em1dzF0ghvJvIv72g7dF5ZE0GrMOcwS-hKLxh0wVb1Cl3m2GN7SIUKqRj_/s400/DSCF4651.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><u>Finally some smiles!</u></td></tr>
</tbody></table>
It really is a <i>dance</i>... she isn't <i>fighting </i>cancer, she's dancing with it. And when it's too tired to dance anymore, it will go away and she won't dance with it again. I hear stories of children having relapses and even giving in to the cancer after relapsing. I don't know anything about how their lives were being lived out during that time, because they don't post on their blogs what they were eating or how much exercise they were getting. But I am determined to help Molly's immune system grow as strong as it can to keep the cancer too tired to dance. I will certainly NOT let it enter our lives again because of poor diet and inactivity. This means we won't be eating much sugar, refined grains, red meat, and dairy. I am sure I am leaving a lot of stuff out of that small "do not eat EVER" list, but I don't want to spend too much time on that right now. "EVER?" you say? Well, alright we'll eat them <i>sparingly</i>. But they are no longer going to be a staple in our diet.We just can't strengthen the cancer with those foods anymore.<br />
<br />
At the clinic today the nurse accessed Molly's port with the needle and tried to draw blood for labs. The port line under her skin must have been clogged because she just could not get any blood! She pushed and pulled lots of saline through the port hoping to dislodge any small clots, but it didn't work and we ended up giving up on labs for the time being and got sent down to the RTU for Molly's lumbar puncture. We finished that, and returned to the clinic to get our chemo schedule for the next phase, and to try to get a blood draw again. They administered just enough tPA (tissue plasminogen activator)<b> </b>to dissolve any clots in the port line, and then tried to draw blood again. It worked!<br />
<br />
Molly had her blood drawn for labs on Christmas eve, and the results from that were all where we wanted them to be. Everything is working so far, Molly is still low-risk, and we are moving on to the Consolidation phase. Here is the treatment for this phase: <br />
<br />
<ul>
<li><u>Second phase: Consolidation.</u> The goal of consolidation therapy is to reduce the number of disease
cells left in the body. The drugs and doses used during consolidation
therapy depend on the patient's risk factors. 4 weeks long.<br /><ul>
<li>1x/day chemo drug by mouth (mercaptopurine or PURINETHOL) (<i>Side effects: low blood counts, possible liver damage</i>)</li>
<li>1x/phase chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
<li>3x/phase on days 1, 8, and 15 lumbar puncture and chemotherapy administration (methotrexate or (TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
</ul>
</li>
</ul>
<br />
We had a fantastic Christmas and Molly and Big Sis got way too many presents, but they deserve them anyways. I am so happy that Molly had enough time to detox from the steroids before Christmas day. Big Sis has been saying that she misses playing with Molly, and I am incredibly overjoyed that they could play together with all their new toys all day! I also enjoyed myself some new Doctor Who episodes (yay!). Daddy was scheduled to work at the theater all night though (boo!). I think that Daddy working so often at nights makes the time we have together mean that much more to us, and we use it more wisely.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjod5Z3VsOAwViOfLszkWcsg7_f7uEMyad4YZZztC9ofY14CYO4cA2LFYxOWukKJzU6KD77cXXUW1J4RzCtcsp0rwdIy2uJtFAG1qMtCo_-gxlS5t7AVuxegu4-JWrDgvMOqkuuZO14aUj3/s1600/DSCF4672.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjod5Z3VsOAwViOfLszkWcsg7_f7uEMyad4YZZztC9ofY14CYO4cA2LFYxOWukKJzU6KD77cXXUW1J4RzCtcsp0rwdIy2uJtFAG1qMtCo_-gxlS5t7AVuxegu4-JWrDgvMOqkuuZO14aUj3/s400/DSCF4672.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly and Big Sis opening presents on Christmas 2012!</td></tr>
</tbody></table>
<br />
<br />
<div class="section fn-group" id="fn-group-1">
P.S.</div>
<div class="section fn-group" id="fn-group-1">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="section fn-group" id="fn-group-1">
<br />
Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.</div>
<br />
<br />Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com4tag:blogger.com,1999:blog-5112388111806592275.post-77211956325753613722012-12-26T12:14:00.000-08:002015-03-26T10:47:06.379-07:00Molly's chemo treatment schedule (abandoned in maintenance cycle 7/8 due to relapse)Molly's Low-Risk ALL chemo treatment schedule (Protocol AALL1331)<br />
(may differ from other ALL patient's treatment schedules) <br />
<ul>
<li><b>DONE! </b><u>First phase: Remission Induction.</u> The goal of induction therapy is to bring the disease into remission.
Remission is when the patient's blood counts return to normal and bone
marrow samples show no sign of disease. 4 weeks long.<u><br /></u><ul>
<li>2x/day chemo steroids by mouth (dexamethasone or DECADRON) (<i>Side effects: increased appetite, insomnia, irritability, water retention in face and other possible areas of body, weakness, increased stomach acid</i>)</li>
</ul>
<ul>
<li>2x/day antacid by mouth (ranitidine or ZANTAC) (<i>Side effects: no common side effects</i>)</li>
</ul>
<ul>
<li>2x/day on Mon and Tue preventative antibiotic for pneumonia by mouth (trimethoprim and sulfamethoxazole or SEPTRA) (<i>Side effects: no common side effects</i>)</li>
</ul>
<ul>
<li>1x/week chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
</ul>
<ul>
<li>1x/phase chemo drug through the port implant (pegaspargase or PEG L-asparaginase) (<i>Side effects: nausea, weakness, poor appetite, stomach pain</i>)</li>
</ul>
</li>
</ul>
<ul>
<li><b>DONE! </b><u>Second phase: Consolidation.</u> The goal of consolidation therapy is to reduce the number of disease
cells left in the body. The drugs and doses used during consolidation
therapy depend on the patient's risk factors. 4 weeks long. <br /><ul>
<li>1x/day chemo drug by mouth (mercaptopurine or PURINETHOL) (<i>Side effects: low blood counts, possible liver damage</i>) </li>
<li>1x/phase chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
</ul>
</li>
</ul>
<ul>
<li><b>DONE! </b><u>Third phase: Interim Maintenance I</u> 4 weeks delayed <a href="http://mollyscancerblog.blogspot.com/2013/01/hospitalized-for-rsv-c-diff-and.html" target="_blank">because of RSV</a>. 8 weeks long.<ul>
<li>5x/phase (10 days apart) chemo drug through the port implant (methotrexate or (TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
<li>5x/phase (10 days apart) chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
</ul>
</li>
</ul>
<ul>
<li><b>DONE! </b><u>Fourth phase: Delayed Intensification</u> 8 weeks long.<ul>
<li>2x/day on days 1-7 and 15-21 chemo steroids by mouth (dexamethasone or DECADRON) (<i>Side effects:
increased appetite, insomnia, irritability, water retention in face and
other possible areas of body, weakness, increased stomach acid</i>)</li>
<li>3x/phase chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
<li>3x/phase chemo drug through the port implant (doxorubicin or RUBEX) (<i>Side effects:</i> <i>low blood counts, nausea, mouth sores, hair loss)</i></li>
<li>1x/phase chemo drug through the port implant (pegaspargase or PEG L-asparaginase) (<i>Side effects: nausea, weakness, poor appetite, stomach pain</i>)</li>
<li>1x/phase chemo drug through the port implant (cyclophosphamide or CYTOXAN) (<i>Side effects: low blood counts, nausea, hair loss, loss of fertility, poor appetite</i>)</li>
<li>1x/day on days 29-42 chemo drug by mouth (thioguanine or 6-TG) (<i>Side effects: nausea, low blood counts, poor appetite</i>)</li>
<li>1x/day on days 29-32 and 36-39 through the port implant (cytarabine or CYTOSAR-U) (<i>Side effects:</i> <i>low blood counts, nausea, mouth sores</i>) </li>
</ul>
</li>
</ul>
<ul>
<li><b>DONE! </b><u>Fifth phase: Interim Maintenance II</u> 8 weeks long.<br /><ul>
<li>5x/phase (10 days apart) chemo drug through the port implant (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
<li>5x/phase (10 days apart) chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
</ul>
</li>
</ul>
<ul>
<li> <b>RELAPSED IN 7TH CYCLE </b><u>Sixth phase: Final Maintenance.</u> If a patient stays in remission after induction, consolidation, interim maintenance and delayed intensification therapies, maintenance therapy begins. The goal is to destroy any disease
cells that remain so that the leukemia is completely gone. 12 weeks long, 8 cycles.<br /><ul>
<li>1x/day chemo drug by mouth (mercaptopurine or PURINETHOL) (<i>Side effects: low blood counts, possible liver damage</i>)</li>
<li>1x/phase chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
<li>2x/day on days 1-5 chemo steroids by mouth (dexamethasone or DECADRON) (<i>Side effects:
increased appetite, insomnia, irritability, water retention in face and
other possible areas of body, weakness, increased stomach acid</i>)</li>
<li>1x/week chemo drug by mouth (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>)</li>
</ul>
</li>
</ul>
<ul>
<li><u>Ongoing treatment: Central Nervous System (CNS) Prophylaxis Chemotherapy.</u> During all three phases of chemotherapy treatment, many patients receive
extra chemotherapy to destroy leukemia cells that may have spread to
the central nervous system (the brain and spinal cord). This
chemotherapy is injected right into the spinal fluid using a lumbar
puncture (spinal tap) or an Omaya reservoir (a device placed under the
scalp). It is called intrathecal chemotherapy.<br /><ul>
<li><b>DONE! </b>Day 1 and 8 of Induction - lumbar puncture and chemotherapy administration (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
</ul>
<ul>
<li><b>DONE! </b>Day 1, 8, and 15 of Consolidation - lumbar puncture and chemotherapy administration (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
<li><b>DONE! </b>Day 31 of Interim Maintenance I - lumbar puncture and chemotherapy administration (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
<li><b>DONE! </b>Day 1 and 29 of Delayed Instensification - lumbar puncture and chemotherapy administration (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
<li><b>DONE! </b>Day 1 and 31 of Interim Maintenance II - lumbar puncture and chemotherapy administration (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
<li><b>RELAPSED IN 7TH CYCLE </b>Day 1 in each 12 week cycle of Final Maintenance - lumbar puncture and chemotherapy administration (methotrexate or TREXALL) (<i>Side effects: low blood counts, nausea, mouth sores, poor appetite</i>) </li>
</ul>
</li>
</ul>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-36132489668262138632012-12-22T08:40:00.000-08:002012-12-26T16:55:56.575-08:00Induction PhaseWeek 1<br />
When we brought Molly home it was a little weird because I didn't know what life was going to be like from now on. She still had her port in and the Home Health Care nurse came to show me how to administer her ceftazidime medication. Molly was still not walking so we had to carry her to the toilet every time she thought she had to go (which was VERY often... ) and she had that increased appetite because of the dexamethasone steroids so we had to carry her to the kitchen often to find something she wanted to eat. We found out quickly that her specific food craving was anything that had tomatoes in it... ketchup, spaghetti sauce, pizza, etc. If she had macaroni and cheese, it had to have ketchup on it. We also learned that it was best to make spaghetti noodles and macaroni & cheese in bulk so it was really quick to dish some out and reheat it real quick for her.<br />
<br />
Week 2<br />
We visited the Hematology/Oncology Clinic for the first time on Wed Nov 28th. Big Sis was at Ama's house because they don't allow siblings to come to the clinic. They took blood for her labs and then started her on a platelet transfusion before they could give her the vincristine chemo. The lab results came back and her red blood cells were pretty low but the doctors decided to hold off one more week to give her a transfusion for that. They sent us down to the Rapid Treatment Unit (RTU) to do a spinal tap again in Molly's back. For the rest of the week we just basically tried to stay busy so we didn't get bored. Even though we still took Big Sis to her tumbling and dance classes, and went shopping and whatever else we needed to do, it felt like we were just living our lives around Molly's medication and potty schedule. We had steroids first thing in the morning, ceftazidime into her port right after that, amlodipine for blood pressure at noon, ceftazidime into her port again in the afternoon, steroids at dinner time, and ceftazidime into her port at midnight. Molly was getting crankier and crankier as the week went by. We noticed that her face started getting really puffy and her belly also got big. Her hair was starting to fall out more too. We also had to have the home health care nurse come by to change Molly's port line (remove the needle, clean the area, stick a new needle and line into the port through her chest) because it needs to be done once a week.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQvY9Qv8-YaALlvpHBSI06lK4OdxczKuhYkr8bm7luGWgP2VZwdjOtphyphenhyphenCv2p0LieQuo_XMdFJQALPPswFDiZCbUvSKCC3NJ_WPL1A2SUiA83k0cczCqnUJssgRy0jHlnL31tfWz9IR-Ym/s1600/20121220_193536.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQvY9Qv8-YaALlvpHBSI06lK4OdxczKuhYkr8bm7luGWgP2VZwdjOtphyphenhyphenCv2p0LieQuo_XMdFJQALPPswFDiZCbUvSKCC3NJ_WPL1A2SUiA83k0cczCqnUJssgRy0jHlnL31tfWz9IR-Ym/s400/20121220_193536.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hair is getting thinner, cheeks are getting fatter...</td></tr>
</tbody></table>
<br />
Week 3<br />
Visited the clinic again on Wed Dec 5th. They took labs through her port again, and administered the vincristine. Then we were taken back to the transfusion room where they put Molly on red blood cells and we sat there for a couple hours. Molly took a nap and I read a book. When that was finished, we had to stay for a half hour to make sure Molly didn't have an allergic reaction to the donor blood, and the oncology doctors came to tell us that we can stop the ceftazidime through her port and remove the port line. We went home and resumed life as best we could. Things seemed a bit more relaxed without the 3x/day port medication, but I still got basically nothing done around the house because Molly needed food so often and every time she needed to pass gas she thought she had to use the toilet. I think I lost 3 lbs this week from carrying chubby Molly to the bathroom, kitchen, living room, Mommy's bed, etc. Molly gained 3 lbs from all the food and the water retention in her face and belly.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Jzta37_3OhU/UNXgoJy8QpI/AAAAAAAAM84/w2p2jelQ1Lw/s1600/DSCF4614.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://2.bp.blogspot.com/-Jzta37_3OhU/UNXgoJy8QpI/AAAAAAAAM84/w2p2jelQ1Lw/s400/DSCF4614.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chubby cheeks and belly</td></tr>
</tbody></table>
Week 4<br />
Clinic visit on Wed Dec 12th. Big Sis spent the day at Grandma Jayne's this week. At the clinic they took labs and administered vincristine again. It was a quick visit this week since we didn't have any outpatient procedures in the RTU or any transfusions. The rest of the week was pretty much the same as last week but Molly was even more cranky and even more hungrier. We ran out of ketchup finally (that stuff really isn't healthy at all, especially for a cancer patient) and Molly had me carry her to the kitchen several times because she just *knew* that we had ketchup hiding somewhere. Molly's face is so puffy I cannot even recognize her. her hair is still falling out a little at a time, but she doesn't have any glaring bald spots yet. I was counting down the days to Dec 18th, her last dose of steroids for this phase. It was a tough week for me, because my mood hormones were low and it
made me tired and irritable, which doesn't mix well with a toddler on
steroids. I had to apologize several times to Molly for losing my cool
and yelling at her.<br />
<br />
Wed Dec 19th, we went to the clinic and they took blood for labs again. Her levels were improving as much as they should be. They didn't give her any vincristine this week, but they did send us down to the RTU to do a spinal tap again and to do a bone marrow aspirate (just take the marrow, instead of a chunk of bone as well). The oncology doctor gave me some papers to read through for the COG study and said that if we consented to participating in the study, we would be randomized to one of two arms of treatment; the standard treatment protocol with all the standard chemo treatments and clinic visits once a week, or a new study protocol which uses more doses of one chemo treatment and less variety of other chemo treatments and we would have to do six three-day hospital stays in the next 5 months. The doctor told me that I had a week (until Dec 26th) to make the decision to either opt out of the study or to consent and have the study decide which protocol we'd be using.<br />
<br />
In the last couple of days, Molly's mood has improved hundred-fold and she was laughing and playing with toys for the first time in over a month yesterday, 3 days after her last steroids dose. Her face is still puffy, but it is going down. She stopped asking for ketchup and other tomato foods and is back to eating toast and cereal for breakfast instead of spaghetti. She still has most of her hair, but it is noticeably thinner. No bald spots yet.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg68aB4Nl9CB9yharvSBovP8pAzakKAgBfLCayOZwxign5oqy-ycncBraR2CePVX8asHAM5RwwtydwjyYqtMFxWrR8cJ9oOm6TAx3WS18t1BtQo_mafXiqIRpwadrwBFXN4rEO8HVlqce-F/s1600/DSCF4641.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg68aB4Nl9CB9yharvSBovP8pAzakKAgBfLCayOZwxign5oqy-ycncBraR2CePVX8asHAM5RwwtydwjyYqtMFxWrR8cJ9oOm6TAx3WS18t1BtQo_mafXiqIRpwadrwBFXN4rEO8HVlqce-F/s400/DSCF4641.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aww... Molly's hair found a new home (this is from one brushing)</td></tr>
</tbody></table>
<br />
I'm so happy that we are done with the month of steroids, and that Molly is responding to the chemo. Whichever treatment arm we end up on next week, we will have about 8 week-long "pulses" of steroids over the next 2.5 years, but I think we can handle it now that I know what to expect. <br />
<br />
Until next time... we love you and know you are thinking of us.<br />
<br />
<div class="section fn-group" id="fn-group-1">
P.S.</div>
<div class="section fn-group" id="fn-group-1">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="section fn-group" id="fn-group-1">
<br />
Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.</div>
<div class="section fn-group" id="fn-group-1">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3O-RU8u_6CNrDuSoeaBy6eGCElWI5xqNIR1soXyuLb7CUTU5XtwdOV0XMW6DUFeVqollckv7BvaHpgGf1zHDl8f-D4GIhYUI4e1qkHPwXBee_SlZ8bve3vl5Zkc6fNiEldfqj7Fem9ad-/s1600/2012-12-22.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3O-RU8u_6CNrDuSoeaBy6eGCElWI5xqNIR1soXyuLb7CUTU5XtwdOV0XMW6DUFeVqollckv7BvaHpgGf1zHDl8f-D4GIhYUI4e1qkHPwXBee_SlZ8bve3vl5Zkc6fNiEldfqj7Fem9ad-/s400/2012-12-22.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Left: Molly at week 2. Right: Molly at week 5.</td></tr>
</tbody></table>
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<div class="section fn-group" id="fn-group-1">
</div>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-40238479009155663382012-12-15T20:27:00.000-08:002012-12-15T20:27:20.314-08:00Molly's first hospital stay, Pt 3 Thursday (Thanksgiving) through Saturday were pretty calm at the hospital. We had a few visitors (Nana, my favorite uncles Kristian and Mac and their amazing wives, and Daddy's boss even stopped by), but mostly it was long and boring. The doctors said that if her lab results on Saturday were no worse than before, she would be able to go home after they gave her the first pegaspargase chemo treatment. We spent those last three days at home cleaning the house and bleaching all the toys, and at the hospital keeping Molly happy with treats and activities, and I created a new crochet pattern for a "chemo cap," which I tested on Big Sis and found I made it too big.<br />
<br />
Molly was now being given steroids three times a day, and because her blood pressure was up she is also taking 1x/day amlodipine (NORVASC). Molly had a mild fever right after her surgery and so the doctor also prescribed a 3x/day ceftazidime (FORTAZ) to be given through her IV port for 14 days.<br />
<br />
The social worker gave us a lot of information on networks for parents and applications for financial aid. There was a lot of stuff in there such as Make-a-Wish Foundation, American Cancer Society, and even a medicaid application (because technically for the next 2.5 years Molly is disabled or something). <br />
<br />
We did ask one of the oncologists how soon Molly would lose her hair, and she said that by the end of the induction phase her hair will be noticeably thinner. <br />
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On Friday was Molly's 2nd birthday, and the social worker asked permission to have the nurses in to sing to her and give her some presents. We figured it would be fine and they sang fantastic and even gave Big Sis a present for being such a great big sister. We didn't really make a big deal of her birthday since we were planning on throwing her a big party after we got home.<br />
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That last morning, the wonderful nurse on duty went through the parent education test with me (she said Molly wouldn't be discharged until we finished the test) and went through which medications do what and when they are to be taken. She then showed me how to administer the ceftazidime into Molly's IV port. After we finished all that, I felt I was ready to take some sort of nursing exam and start work! The oncologist came in around noon to administer the pegaspargase chemo and then we watched for any allergic reactions for 2 hours.<br />
<br />
Precisely at 4:00pm on Saturday we were allowed to take Molly home. That drive home was surreal because for the whole week it was like we were living in a strange dream that I was going to wake up from at any moment. And then suddenly we're in the car with Big Sis and Molly and Daddy and me and we're going HOME!<br />
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<tr><td class="tr-caption" style="text-align: center;">Molly sure was happy to get home and get back to her usual activities.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All of Molly's medications, minus the ceftazidime.</td></tr>
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<div class="section fn-group" id="fn-group-1">
P.S.</div>
<div class="section fn-group" id="fn-group-1">
</div>
<div class="section fn-group" id="fn-group-1">
<br />
Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.</div>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com0tag:blogger.com,1999:blog-5112388111806592275.post-490870729753139922012-12-09T12:13:00.000-08:002012-12-15T18:52:10.208-08:00Molly's first hospital stay, Pt 2Wed, Nov 21st, at about 6am one of the many wonderful nurses that took care of Molly during our stay at PCMC told us that Molly was scheduled to go into the OR at 7:30am. We were pretty excited about that because it meant Molly didn't have to go all day without food. The nurse had me take Molly's earrings out and we wheeled her bed through the halls and down to the 2nd floor where they put us and her bed into a room to wait for the anesthesiologist to come get her.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoOqCMx9r07mGuAgYcMQ7nhUzMf-JeK9G4s8IPKl09vgtoF0z3XvziepeeISm8LqBrHxdpE1WT0U9UYn35tviNhLDGgOKJmITXUg_dKjeYX7LRFRN3Ta2JOFmzlNwBAGaHL82LWAcSIsY8/s1600/20121121_072643.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoOqCMx9r07mGuAgYcMQ7nhUzMf-JeK9G4s8IPKl09vgtoF0z3XvziepeeISm8LqBrHxdpE1WT0U9UYn35tviNhLDGgOKJmITXUg_dKjeYX7LRFRN3Ta2JOFmzlNwBAGaHL82LWAcSIsY8/s400/20121121_072643.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the pre-operating room. She's smiling under that mask.</td></tr>
</tbody></table>
We didn't tell her what was happening because I know how awful anticipation can be, so when the anesthesiologist came to get her, we told her he was going to take her into another room and told her to have fun. We made sure not to make a big deal of it, and we also made sure the anesthesiologist knew that Molly loves her frog blankie, and to say "frog blankie" and "pink blankie" not like it's a description of the blanket, but like it's the blanket's name. <br />
<br />
We were directed to the parent waiting room, where we checked in and told the front desk that we'd be going up to our room to eat breakfast instead of waiting downstairs for the 2 hours Molly would be in surgery. For the next 2 hours we pretty much relaxed. We ate breakfast in Molly's room, then I grabbed my cell phone charger and we went down to the waiting room. The surgeon who was placing the port came in shortly after we got there and told us he was finished... which surprised us, because it had only been about 30 minutes. But then we found out they had not done the lumbar puncture or bone marrow biopsy yet. So we waited in that room for the remaining time and right around the 2 hour mark the front desk called for "one parent for Molly" and James went to sit with Molly as she woke up from the anesthesia. I waited for what seemed like forever before the front desk called "Molly's mom to the front desk."<br />
<br />
The halls on the 2nd floor have pictures of things like kites or hot air balloons on the floor, and I was told to walk down the hall to the hot air balloon and wait there where they'll bring Molly out. In a couple of minutes the doors opened there and Daddy and Molly came out. She didn't look miserable or anything, so I said hi, and I love you, and how are you, and we walked back up to her room.<br />
<br />
When we got back to the room, we were told that her spinal fluid test was negative for cancer cells, so that tells us that the cancer hasn't traveled to her brain. They'll be testing her spinal fluid periodically throughout the treatment to make sure it remains negative. We were given an outline for the treatment Molly will be getting.<br />
<br />
Quick lesson: Molly's chemo treatment schedule<br />
<br />
<ul>
<li><u>First phase: Remission Induction Chemotherapy.</u> The goal of induction therapy is to bring the disease into remission.
Remission is when the patient's blood counts return to normal and bone
marrow samples show no sign of disease. 4 weeks long.<u><br /></u><ul>
<li>2x/day chemo steroids by mouth (dexamethasone or DECADRON) (<i>Side
effects: increased appetite, insomnia, irritability, water retention in
face and other possible areas of body, weakness, increased stomach acid</i>)</li>
</ul>
<ul>
<li>2x/day antacid by mouth (ranitidine or ZANTAC) (<i>Side effects: no common side effects</i>)</li>
</ul>
<ul>
<li>2x/day on Mon and Tue preventative antibiotic for pneumonia by mouth (trimethoprim and sulfamethoxazole or SEPTRA) (<i>Side effects: no common side effects</i>)</li>
</ul>
<ul>
<li>1x/week chemo drug through the port implant (vincristine or ONCOVIN) (<i>Side effects: hair loss</i>)</li>
</ul>
<ul>
<li>1x/month chemo drug through the port implant (pegaspargase or PEG L-asparaginase) (<i>Side effects: nausea, weakness, poor appetite, stomach pain</i>)</li>
</ul>
</li>
</ul>
<ul>
<li> <u>Second phase: Consolidation Chemotherapy.</u> The goal of consolidation therapy is to reduce the number of disease
cells left in the body. The drugs and doses used during consolidation
therapy depend on the patient's risk factors. 4 to 8 months long.<br /><ul>
<li>We don't have the treatment schedule for this yet. </li>
</ul>
</li>
</ul>
<ul>
<li> <u>Third phase: Maintenance Chemotherapy.</u> If a patient stays in remission after induction and consolidation
therapy, maintenance therapy begins. The goal is to destroy any disease
cells that remain so that the leukemia is completely gone. 2 to 3 years long.<br /><ul>
<li>We don't have the treatment schedule for this yet.</li>
</ul>
</li>
</ul>
<ul>
<li><u>Ongoing treatment: Central Nervous System (CNS) Prophylaxis Chemotherapy.</u> During all three phases of chemotherapy treatment, many patients receive
extra chemotherapy to destroy leukemia cells that may have spread to
the central nervous system (the brain and spinal cord). This
chemotherapy is injected right into the spinal fluid using a lumbar
puncture (spinal tap) or an Omaya reservoir (a device placed under the
scalp). It is called intrathecal chemotherapy.<br /><ul>
<li>Day 1 of Induction - lumbar puncture and chemotherapy administration</li>
<li>Day 8 of Induction - lumbar puncture and chemotherapy administration</li>
<li>Day 29 of Induction - lumbar puncture and chemotherapy administration</li>
<li>We don't have the treatment schedule for any after this yet. </li>
</ul>
</li>
</ul>
<br />
The bone marrow biopsy was to test further what classification of ALL Molly has; and the results came back as Early pre-B cell ALL.<br />
<br />
<i>Quick lesson:</i> Classification of childhood leukemia<br />
Doctors have found that lab tests provide more detailed information about the subtype of ALL. These tests help divide ALL into groups based on the immunophenotype of the leukemia, which takes into account:<br />
<ul>
<li>The type of a kind of white blood cell (lymphocyte) (B-cell or T-cell) the leukemia cells come from</li>
</ul>
<ul>
<li>How mature these leukemia cells are </li>
</ul>
There are 4 main subtypes of ALL, as shown below<br />
<ul>
<li>Early pre-B cell; 60%-65% frequency</li>
</ul>
<ul>
<li>Pre-B cell; 20%-25% frequency</li>
</ul>
<ul>
<li>Mature B cell; 2%-3% frequency</li>
</ul>
<ul>
<li>T cell; 15%-18% frequency</li>
</ul>
B-cell ALL is the most common. T-cell ALL affects boys more often than girls and it affects older children more than does B-cell. <br />
<br />
<i>Quick lesson:</i> (Source: http://www.cancer.org/cancer/leukemiainchildren/detailedguide/childhood-leukemia-prognostic-factors)<br />
<br />
<b>Prognostic factors for children with ALL</b><br />
Different systems are used to classify childhood ALL risk. In one of
the more common systems, children with ALL are divided into
standard-risk, high-risk, or very high-risk groups, with more intensive
treatment given for higher risk patients. Generally, children at low
risk have a better outlook than those at very high risk.<br />
<br />
While all of the following are prognostic factors, only certain ones
are used to determine which risk group a child falls into. (The first 2
factors – age at diagnosis and initial white blood cell count – are
generally considered the most important.) It's important to know that
many children with one or more poor prognostic factors can still be
cured.<br />
<ul>
<li><b>Age at diagnosis:</b> Children with B-cell ALL between the ages of
1 and 9 tend to have better cure rates. Children younger than 1 year
and children 10 years or older are considered high-risk patients. The
outlook in T-cell ALL isn't affected much by age.</li>
</ul>
<ul>
<li><b>White blood cell (WBC) count:</b> Children with ALL who have
especially high WBC counts (greater than 50,000 cells per cubic
millileter) when they are diagnosed are classified as high risk and need
more intensive treatment.</li>
</ul>
<ul>
<li><b>Subtype of ALL:</b> Children with pre-B or early pre-B-cell ALL
generally do better than those with mature B-cell (Burkitt) leukemia.
The outlook for T-cell ALL seems to be about the same as that for B-cell
ALL as long as treatment is intense enough.</li>
</ul>
<ul>
<li><b>Gender:</b> Girls with ALL may have a slightly higher chance of
being cured than do boys. As treatments have improved in recent years,
this difference has shrunk.</li>
</ul>
<ul>
<li><b>Race/ethnicity:</b><i> </i>African-American and Hispanic children with ALL tend to have a lower cure rate than children of other races.</li>
</ul>
<ul>
<li><b>Spread to certain organs:</b><i> </i>Spread of the leukemia into
the spinal fluid, or the testicles in boys, increases the chance of a
poor outcome. Enlargement of the spleen and liver is usually linked to a
high WBC count, but some doctors view this as a separate sign that the
outlook is not as favorable.</li>
</ul>
<ul>
<li><b>Number of chromosomes:</b> Patients are more likely to be cured if their leukemia cells have more than 50 chromosomes (called <i>hyperdiploidy</i>),
especially if there is an extra chromosome 4, 10, or 17. Hyperdiploidy
can also be expressed as a "DNA index" of more than 1.16. Children whose
leukemia cells have fewer chromosomes than the normal 46 (hypodiploidy)
have a less favorable outlook. </li>
</ul>
<ul>
<li><b>Chromosome translocations:</b> Translocations result from the
swapping of genetic material (DNA) between chromosomes. Children whose
leukemia cells have a translocation between chromosomes 12 and 21 are
more likely to be cured. Those with a translocation between chromosomes 9
and 22 (the Philadelphia chromosome), 1 and 19, or 4 and 11 tend to
have a less favorable prognosis. Some of these "poor" prognostic factors
have become less important in recent years as treatment has improved. </li>
</ul>
<ul>
<li><b>Response to treatment:</b> Children whose leukemia responds
completely (major reduction of cancer cells in the bone marrow) within 1
to 2 weeks of chemotherapy have a better outlook than those whose
leukemia does not. Children whose cancer does not respond may be given
more intensive chemotherapy. </li>
</ul>
<br />
<br />
<br />
Molly is a low risk patient. She was 1 week away from her 2nd birthday at diagnoses, her white blood cell count was 6,200 per cubic milliliter, she has early pre-b cell ALL, she's a female, and the cancer hasn't spread to her spinal fluid.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS3vRldp4Hk_kaPn-nMDunjo6iO42YESoybtWFKcHWk9YJV3UFUq6-LppF8ioNePMz8DHHoG1CvS6HCUOjP76Raqd6oSvG2zVO4f88scKEW0UuX4EkFp1t7llgmQFY50yvuWXvB67NxID8/s1600/DSCF4513.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS3vRldp4Hk_kaPn-nMDunjo6iO42YESoybtWFKcHWk9YJV3UFUq6-LppF8ioNePMz8DHHoG1CvS6HCUOjP76Raqd6oSvG2zVO4f88scKEW0UuX4EkFp1t7llgmQFY50yvuWXvB67NxID8/s400/DSCF4513.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just out of surgery! It went very well.<b><br /></b></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Molly and Big Sis doing some coloring. It's much easier now that the hand IV is out!</td></tr>
</tbody></table>
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<div style="text-align: center;">
This is a video of Molly hooking her cords up again after a trip to the bathroom. She insisted she do the task herself... if we even presumed to do it for her, she would get very upset!</div>
<br />
All the family visited again, and since Nana was in town for Thanksgiving the next day, she came to visit and brought gifts and get-well cards from family up in Idaho. Daddy and I decided to take Big Sis home to our house for the rest of the week, so I went home Wednesday night to clean up the house, shower and get some rest while Daddy was at the hospital with Molly, and the next day Big Sis and I went back to the hospital. <br />
<br />
To be continued, of course...<br />
<br />
<div class="section fn-group" id="fn-group-1">
P.S.</div>
<div class="section fn-group" id="fn-group-1">
</div>
<div class="section fn-group" id="fn-group-1">
<br />
Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.</div>
Leiselhttp://www.blogger.com/profile/04409339164500245247noreply@blogger.com1