Hospital Stay, Weeks 8-9

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!

Here's a rundown of what her routine looks like:
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.

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.

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.

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.

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.

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.

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.

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.

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 CAR T-Cell therapy. 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.

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.

It is much easier for us to do quick updates on Molly's Survival and Thrival Facebook page, 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!

Molly's big surgery, part 2

Continued from here

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.

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.

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.

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.

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.

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.

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!

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!

We've created a Facebook page for Molly! Come "like" the new Molly's Survival and Thrival page! http://www.facebook.com/mollysurvivesthrives

Molly's big surgery, part 1

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.

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.

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.

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...).

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.

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.

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.

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.

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.

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. 
To be continued here...

Post-Operation Recovery

For 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.

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.

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.

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.

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.

Doing well on March 31st, preoccupied with picking dry skin off her lips and fingertips.

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.

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.

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 PICC line 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.

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.

Molly had a rare energetic minute, and we played a modified version of pictionary. This is a cat she drew. Taken on April 3rd.

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!

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.

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 Facebook page where I post more frequent Molly updates publicly.

Surgery for Necrotizing Fasciitis

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.

Ready to go into surgery. Not having a very fun time though.

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.

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. 

Somehow I fit on that couch too...

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. 

Doing well after surgery

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. 

The many machines on which Molly's life depends.

 To be continued...again...

Morphine stopped and Necrotizing Fasciitis appeared

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. 

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!

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 necrotizing fasciitis (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.

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 wound VAC 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. 

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. 

To be continued...here

Awesome Supporters

I 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.

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.

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.

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.

Wayne & Jayne S.
Dean & Lenore M.
Lamont & Marion S.
James C.
Earl & Linda M.
Ann L.
Lowell M.
Dewey & Helen F.
All of Molly's aunts & uncles
Ryan & Ashlyn T.
McKenna M.
Ethan M.
Jordan M.
Timothy & Christina S.
Mac & Rosi M.
Annette H.
Kara W.
Kristian & Cindy M.
Carrie R.

Peggy J.
Randy & Amy H.
Ron R.
Daelen M.
The members of WDPB
Ashley P.
Ashley M.
Christina T.
Melissa G.
Baden & Julie H.
Andorisann M.
Wayne K.
The medical personnel at PCH
The medical personnel at IHC HomeCare

Mike & Laurie T.
Tina C.

Janelle and Rich D.

Teresa and Mike V.

Kristina Y.

Tammy and Gregg G.

Liz and Justin C.

Donna S.

Erin and Stew C.

Kevin and Brenda T.

Jennie D.

Frank N.

Ginger R.

Shawna and Mila F.

Sharynn and Jon F.

Clare V.

Jamie L.

Kearsti H.

Pat T.

Deb and Vince G.

Cassi and Justin E.

Becky R.

Ingrid K.

Lael W.

Janise W.

Nicole and Jason S.

Maggie E.

Aaron S.

Hemanshu

Tiffanie L.

Singh

Nikhil M.

Patricia A.

Jon W.

Anthony P.

Samuel F.

Natalie S.

Amanda V.

Ted O.

Marco A.

Cydnee F.

Jordan R.

Raquel P.

Halfway through the first treatment block

Molly is at day 14 of 28, and a few things have been complicating matters.

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.

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.

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.

Molly is upset that I won't take the feeding tube out.

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.

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.

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.

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.

Molly's Relapse Bone Marrow Transplant Chemo Treatment Schedule (updated periodically as we go along)

Molly's Bone Marrow Transplant Conditioning Regimen (Protocol AALL0932)
(Intermediate-Risk Non-T cell Isolated-Marrow ALL Early-Relapse (18+ months after first diagnosis, within 6 months of end of therapy))

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.

The possible protocol below does not include prophylactic medications or medications to help with side-effects.

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:

• Block 1: Remission Induction. 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.
  
  • 2x/day chemo steroids on days 1-5 and 15-19 by mouth (dexamethasone) (Side effects: increased appetite, insomnia, irritability, water retention in face and other possible areas of body, weakness, increased stomach acid)
  • 2x/block chemo drug on days 1-2 through port implant over 30 minutes (mitoxantrone) (Side effects: bladder pain, mouth sores, dizziness, weakness, stomach pain, low blood counts) 
  • 1x/week chemo drug on days 1, 8, 15, & 22 through the port implant (vincristine) (Side effects: hair loss)
  • 1x/block chemo drug on days 3 & 17 through the port implant over 2 hours (peg-aspargase) (Side effects: nausea, weakness, poor appetite, stomach pain)
  • 2x/block prophylactic central nervous system (CNS) chemo drug on days 1 & 8 via lumbar puncture (methotrexate) (Side effects: low blood counts, nausea, mouth sores, poor appetite)

• Block 2: Consolidation. 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).
  
  • 2x/day chemo steroids on days 1-5 by mouth (dexamethasone) (Side effects: increased appetite, insomnia, irritability, water retention in face and other possible areas of body, weakness, increased stomach acid)
  • 1x/block chemo drug on day 1 through the port implant (vincristine) (Side effects: hair loss)
  • 1x/block chemo drug on day 9 or 10 through the port implant over 2 hours (peg-aspargase) (Side effects: nausea, weakness, poor appetite, stomach pain)
  • 1x/block prophylactic central nervous system (CNS) chemo drug on day 8 via lumbar puncture (methotrexate) (Side effects: low blood counts, nausea, mouth sores, poor appetite)
  • 1x/block chemo drug on day 8 through the port implant over 36 hours (methotrexate) (Side effects: low blood counts, nausea, mouth sores, poor appetite)
  • 1x/day chemo drug on days 15-19 through the port implant over 30 minutes (cyclophosphamide) (Side effects: cough, fever, elevated heartbeat, painful urination, weakness) 
  • 1x/day chemo drug on days 15-19 through the port implant over 2 hours (etoposide) (Side Effects: chills, cough, fever, mouth sores, low blood counts)

• Total Body Irradiation (TBI). 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.
  
  • 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.

• Bone Marrow Transplant (BMT). 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.
  
  • 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.
  • 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. 
  • 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.  
  • 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.