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.

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.