A Rylee Recap- November

Before November becomes too much of a distant memory for me, I just wanted to journal a little bit about Rylee's past month of treatment.

{This picture is not a current one, it was taken in July, but I've been terrible at taking any pictures lately and I hate it when posts have no pictures.}

This past month, Rylee has been in the second phase of treatment for ALL. It's called Standard Consolidation and lasts 4 weeks (28 days). We've been able to do all of her treatments here in Rexburg this month, which has been such a blessing to not have to travel on top of everything else. This is what it consisted of- we finish it up tomorrow!

1- She's had 3 spinal punctures (once a week). These are done up at the hospital. Basically it's a procedure where the Oncologist pokes her lower back and takes a sample of her spinal fluid, which is then sent off to a lab to check for any signs of Leukemia cells. Then they inject a chemo drug called Intrathecal Methotrexate into the spinal fluid for prevention purposes. I know it sounds complicated, but she's under anesthesia for the procedure, which actually only takes about 20 minutes or so. The whole appointment takes about 2 hours though by the time they prep her, do vitals a hundred times and then once she comes out of it etc.

[This has been much easier to do locally though because she gets the first appointment of the day (we have to be at the hospital by 6:30 a.m.), which is considerably easier than our 3 p.m. appointments at Primary Children's. Because she can't eat or drink anything after midnight due to the anesthesia (which was really more like 6:00 p.m. when we have dinner) it was torture trying to keep a hungry 18 month old content during a 3.5 hour drive, clinic that takes a couple hours and sometimes even through a 2+ hour blood transfusion all while on steroids that made her hungrier than a grown man. Glad that's over!]

2- She only had to have one IV push of the chemo drug Vincristine this month. {She used to get this weekly} This is given through her central line in a syringe. It's done at the Dr.'s office and only takes a few minutes.

3- Had her blood drawn each week to check counts and ANC levels. All of her counts have been pretty good this month. Her white blood cell count is a little low, but that's typical for her condition. Her Hematocrit is back up in the normal range {this was the count that was very scary at diagnosis and why she had to get so many blood transfusions- it was at a 10 and is now up to 37.5%. Normal range is between 30-40%.} ANC (absolute neutrophil [or immune] count) level has been up. Initially this was at 0% and she's now up to about 1.2%. The Dr. says she was at a level 4, which means she really had no ability to fight stuff off and now she's at about a level 2. He hopes to keep her right in this range throughout treatment.

It affects us less since the ANC count has gone up. We can now take her out and about with us more. We've been taking her to church and although nursery was not recommended, I've been taking her in for the music time and she just loves to interact with the kids. We still have to be careful to keep her away from sick people and in crowds due to cold & flu season, but it feel much more free now that she doesn't always have to stay behind.

4- Rylee's been on an oral medication called Mercaptopurine that we had to give to her once a day. She also takes a med called Septra twice a day every Mon. and Tues.

5- She has not lost much more hair. I trimmed up her bangs and the back (growing a small tail ), but I'm still able to do little piggies in the back or a clip or something up front. Little bits fall out when I combing it, but so far, it's not too bad. I'm pretty sure that in another month or two it will fall out. She'll be getting more chemo in the coming months- I'm expecting it to have some effect.

Besides a visit from the home health nurse once a week, that's about it for this month. It was definitely less intense than the first month. And thank goodness it didn't require steroids! They will return later, so I'm appreciating it when we don't have them. I just could not be more grateful for all the prayers on our behalf. Rylee's tolerance for treatment has been remarkable and so far, there is no sign of relapse! Please continue to pray for her- it's working!

We've been given her treatment plan for the next course, which she'll start on Monday. It lasts about 8 weeks (56 days) and will go through right around Feb. 2. In the upcoming months, she'll be given two different chemo drugs (IV push) every 10 days. One of the chemo drugs will increase in dosage each week. Then she'll just have one spinal puncture. We are then told that she'll have about a two week break and then another "intense" course will begin. This is what one Dr. referred to as the "One, two punch." Apparently it's the last hard course before a patient enters the maintenance phase.

So...I can see the light.