A Glimpse/Update: Rylee's First Phase

So...I've been meaning to do some updates on Rylee and then I decided to hold off until we got the results back from the bone marrow test that she got last week. Thursday, Oct. 30 was Rylee's Day 28-the last day of Induction or the first phase of treatment. She had to have a bone marrow test and also a spinal puncture, where they've been giving chemo into the spinal fluid to prevent any Leukemia cells from forming there.

It's hard to believe that a month has already past since her diagnosis. Even harder to believe all that we've experienced in just a month's time. I think most of it has sunk in and we've got a pretty good handle on things now, although there are moments when this is still difficult to fully comprehend: what we're dealing with and what's ahead. The month has been full of ups and downs, but overall, it's been better than I was initially expecting. I decided to give you all a little glimpse at what it's been like in this first phase.

This past month (October) Rylee has gone through a lot. She's been diagnosed with ALL (Acute Lymphocytic Leukemia), gone on 2 ambulance rides and one ride on life flight, spent nearly a week at Primary Children's Hospital, had a central line inserted in her chest, has had 4 red blood cell transfusions and 3 platelet transfusions, gone through 4 rounds of chemo, got a PEG (chemo) shot into a muscle in her leg, had an EKG, been put under for 4 bone marrow aspirates and 3 spinal punctures, she's had 3 chemo treatments in her spine, taken steroids twice a day everyday, has had the appetite of a teenage boy, gained over 5 pounds and got all puffed up due to the steroids, been on and then off of an antibiotic administered through her central line every 8 hours for nearly a week, has taken a medication (Septra) twice a day every Monday and Tuesday to prevent pneumonia, taken several other medications daily, visited the Dr. once a week, got her blood taken and tested every week, her hair has thinned, she got thrush in the mouth for a few days and has had a bad diaper rash, that we've been treating with yet another medication. And somehow this child has managed to keep smiling and be happy.

But...the good news is that she's achieved remission! I know it may seem soon to some, however, about 95% of leukemia patients achieve remission in the first month of treatment. She actually achieved remission on her Day 14- they achieve remission if they have 5% or less leukemia cells detected in the bone marrow and blood. Two weeks ago, Rylee's was at 1% and this week's results detected 0% in the bone marrow, blood and on the molecular level. It is what was expected and certainly what we have been hoping and praying for. Otherwise, more intense treatment would have been necessary.

We wish it was just that easy though-that it was all said and done in a month. Through studies and research, they have found that it always relapses if they don't treat leukemia for just over 2 years (about 3.5 years for boys). And it most commonly relapses in the spinal fluid, which then affects the brain and central nervous system. That's why they do chemo in the spine, to prevent any bad cells from going there. So..essentially, this is just the beginning for us. There is still a long road ahead. But...the good news is that we're going to be able to move the majority of her treatments to Rexburg now. Still weekly for now- she'll still get a spinal punctures weekly, but no more bone marrow tests will be necessary, unless relapse happens. We'll learn more about the next phase of treatment this week, but basically they have taken her off the steroids for awhile and she'll start a new type of chemo and possibly some other meds as well. This week will just be blood work because to move to the next phase, it's count dependent. Dr. Jeff Hancock is a pediatric oncologist here & he trained at Primary Children's and the Mayo Clinic. He's from Rexburg originally and just joined Dr. Dixon's practice about 2 years ago. He is highly recommended at Primary's and he was the specialist they called in at the E.R. that originally gave us Rylee's diagnosis. We feel really good about him & even better that he's close and convenient since the winter weather is on it's way & I'm getting bigger & bigger each day being pregnant.

As I've said before, there is a lot of hope for Rylee. Based on age at diagnosis, type of leukemia, sex and response to treatment, Rylee is in a low to standard risk bracket. If treated for just under 2.5 years, they have about an 85%-90% success rate. However, I've seen cancer enough now to know it's unpredictable. Last week I met another parent who's son is almost 6 years old. He was diagnosed at 17 months and they have been at this fight for 4 years. His relapsed in the maintenance phase(last phase) and he is now at his last 10 weeks of his second go-round. The second go is much more intense. I really hope that we'll only have to endure this once, but realize that anything is possible.

Thank you again for your many thoughts, prayers and concern. We continue to feel the strength and power of the many prayers being offered in our behalf. This month, aside from everything that we've been through, we have also witnessed the gospel in action. Faith works, hope is real, charity never faileth, there is power in the Priesthood, prayers are answered, sacrifices of fasting are rewarded, the Spirit guides and comforts us, God knows us and loves us and He has a plan for each of us. There is no such thing as coincidence. He has purpose for all of us and has carefully been preparing this path for us by putting us in the right places at the right times and has blessed our lives with all the right people to help us get through this. We've experienced all of this first-hand, which is really, a post in and of itself.