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.