Saturday, March 28, 2015

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...

Thursday, March 26, 2015

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

Wednesday, March 25, 2015

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.
Tiffanie L.
Nikhil M.
Patricia A.
Jon W.
Anthony P.
Samuel F.
Natalie S.
Amanda V.
Ted O.
Marco A.
Cydnee F.
Jordan R.
Raquel P.

Monday, March 16, 2015

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.

Friday, March 06, 2015

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.

Thursday, March 05, 2015


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. 

At one of the most recent visits we've had in the last year
 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.

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,  and sent her home before lunch.

We were getting dinner ready that night, when Daddy got a phone call. He never gets calls at night. It was the oncologist,  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.

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.

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,  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.

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.

Back at home things were running smoothly,  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,  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.

Chillin' in bed with videos on the red tablet

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. 
She was rather upset that there was someone already in the restroom when she needed to use it

She cheered up after a bit though!

Molly wanted to make sure everyone knew we belonged to her

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.