Thursday, May 12, 2016

Consolidation Road Map - Day 1

After last week's lumbar puncture and biopsy, Ellie had a week off of medicine. So, it appears as though I took a week off from blogging. Most of the time, once Ellie finishes one course of treatment, she will have a little bit of a break before beginning the next one. This time she had a week off, and her next phase, Consolidation, began today.

(If I'm being completely honest, Ellie did receive an antibiotic on Saturday and Sunday. For the entire course of her treatment, she takes a couple of doses of Bactrim on the weekends. This helps to prevent a specific type of lung infection??? I'm not sure I am remembering correctly. But, there was no chemo or steroids given, so for all intensive purposes, it was a week off.)

Before I go on with her next course of treatment, I figured I would elaborate on last week's results. We are so thrilled with how Ellie has responded to her treatment so far! It is official, and we can say that she is in remission. Further tests showed less than 0.001% of Leukemia cells. This is exactly where we hoped and prayed that Ellie would be at this point. She is supposed to be cancer free at this point as a failed Induction would indicate more serious problems. With her diagnosis and course of treatment, she is doing amazing. One of her doctors today commented that nothing is 100%, but Ellie is as close to a 100% success rate as it can get. Praise God!

So where are we now? We are beyond thrilled that our Heavenly Father has provided, the medicine has done exactly what it is supposed to do, and Ellie is cancer free! However, she still has an incredibly long, difficult and tiring journey ahead of her. 

Yes, with a diagnosis of ALL, even after remission is achieved in the first month, a patient still continues to receive treatment for the full 2 1/2 years (give or take a month or two). Without fully understanding it myself, the best way I can explain it is that the leukemia will continue to return, over and over again. Everything from this point forward is to make sure it never comes back, essentially trying to head it off at the pass.

So, here we are today, with a lot more information about what Ellie has in store over the next two years. There is a reason why we were not told everything upon her initial diagnosis. Oh many drugs! So much chemo! So many steroids! So many lumbar punctures!

(Side note: When Ellie was 11 days old, she caught a cold and ran a high fever. When that happens, it's an automatic ER visit with every test you can imagine. Ellie ended up being fine, as it really was just a cold, but one of the procedures she received was a lumbar puncture. It was terribly hard on us, and still is. But my, if only we knew then, that that was just the first in a series she would receive over the next few years.) 

Back to today...Ellie began her next phase of chemo today which included chemo administered to the spinal fluid via lumbar puncture, chemo given by IV, and then oral chemo taken tonight before bed. For all of you accountants out there, that's three different chemotherapy drugs that Ellie received today. Ay yi yi. She has two more lumbar punctures this month, and also receives daily oral chemo. Believe it or not, this is considered easier than last month, which I do believe, because there will be no steroids involved. She could experience some nausea as a side effect, so please pray against that. 

"Where's my bed?"
Ellie asks this because she knows once she is in bed and wakes up, she gets to eat.
Here she is, waiting to get her LP.

Just chicken fingers and pretzels today. And no double fisting them either. :(
But, she is looking rather suspicious, don't you agree?

Her road map for this round is as follows: 
Vincristine: Day 1 (IV)
Methotrexate: Days 1, 8 & 15 (LP)
Mercaptopurine: Days 1-28 (oral)

Overall, Ellie is doing so, so great! Her appetite has leveled out, her weight is stabilizing, she is sleeping great at night (naps have recently been hit or miss), her attitude is mostly joyful (she is still 2...lots of "spiciness"), her fine motor skills are perfect, and her gross motor skills are improving. She's not climbing any rock walls or running any races, but she is actively trying to move on her own each day. 

Morning calisthenics with Nora.

Somewhat depicted in this picture, Ellie thinks leukemia is a free ride to sit on the coffee table.
I have to constantly remind her that it is not. 

Even with what lies before her, it is so encouraging to see her little body handling everything so well thus far. She began physical therapy this past Monday, and will continue to visit once a week. She LOVED it! Strength is clearly an issue with her not walking, but also balance. She has not quite regained it, and it is also difficult because she has been so top heavy recently. This should all level out soon.

(I forgot to take pictures during her actual PT, so these are of Ellie hanging out afterward.)

We are coming out of the fog of the initial shock of diagnosis, and settling into what everyone will call our "new normal". Ellie is not so prone to infection, so we ventured out to the beach on Mother's Day. It was wonderful, and she enjoyed the change of scenery. We can take her out to public places now, but still have to be extremely cautious with "germy" places, trying to avoid sickness as much as possible. 

Sooooo much better than our house, our car and the hospital.
The only places she visited for the past month.

Thank you for your continued love, prayers and support for Ellie and our family.

Please continue to pray for her complete and permanent healing with no long term side effects. (This is a new addition. The side effects are real and nasty. We do not want Ellie to live permanently with anything that is related to the leukemia or treatment.)

Pray for Eva and Nora to have understanding and patience as best as they can.

Pray for strength for Mike and myself.

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