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.

Relapse

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.

Maintenance, round 1 of 8

Hey! We're in Maintenance!

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!

It's a good clinic visit! Two thumbs-up!

 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!

I love watching this kid sleep! Almost as much as when she's awake!

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.

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.

Our Light the Night team. Molly's Minions.

Big Sis the Purple Monster and Molly the Ladybug (and some random old lady in gym shorts...)

 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.

Interim Maintenance 2 Clinic Visits

On 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.

Molly always gets to play on Mom's iPod when we go to the clinic. Her favorite game is Monkey Preschool Lunchbox.

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.

Big Sis got to stay with Molly while we were at the ER for Molly's fever. Molly really liked having her there.

 That Friday, Molly had a scheduled clinic appointment that went really fast because she just needed methotrexate and vincristine into her port.

In the clinic rooms they have these neat toys attached to the walls that the kids can play with while waiting.

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.

 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!

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.

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.

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.

 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.

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.

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.

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.

Delayed Intensification Part 2

We made it through the whole Delayed Intensification phase!

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.

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.

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.

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.

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!

Next we start with the Interim Maintenance II phase! 

Delayed Intensification Part 1

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).

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.

This is what we do at clinic check-in. Weight, height, and blood pressure.

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.

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.

Molly in the RTU recovery room after waking up from the anesthesia for her lumbar puncture.

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.

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.

This was taken in the infusion room where they push her chemo into her port.

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.

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.

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.

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.

Hospital 2< days overnight bag

Molly:

Pink blankie and Frog blankie

Tiger stuffed animal

Owl Light and charger

Change of clothes

Pajamas

Extra underwear, socks

Pull-ups

Wipes

Comb

Toothbrush

Chapstick

Books

Puzzles

DVDs in travel case

iPod and charger

Water cup

Diffuser & Oils

Medications

Stroller

 

Daddy/Mommy:

Changes of clothes, socks

Sweater

Scarf and hat

Laundry Detergent

Feminine Hygiene products

Toothbrush and floss

Ibuprofen

Makeup

Face wipes

Un-petroleum Jelly

Chapstick

Comb, hair ties, and mirror

Hand lotion

Hand Sanitizer

Nail clippers and polish

Phone and charger

Laptop and USB drives

Calendar

Notebook and pen

Camera and batteries

Crochet/Knit project

Reading Material

Headphones

Snacks

Gum/Mints

Water cup with straw

Reusable shopping bags

Cash for vending machines

P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered