Here is an update on sweet little Alexis from her mommy Ashley! I got some of the info wrong yesterday based on the limited communication we had via text message, so here is the full details on Alexis’ current condition. Please use this to know how to pray for her!
“Yesterday we went to Pittsburgh for an LP (spinal tap) and chemo. We were also excited to find out the results of the last bone marrow aspirate to find out what “risk group” Alexis was put into.
The first two hours we were there, Alexis was given fluids through an IV. She needed these to prevent damage to her bladder from the Cytoxan (type of chemo) that she received. (She will have to do this again in 4 weeks.) After her fluids, we met with her doctor to talk about her bone marrow results.
The test they did was 1,000 times stronger than the previous tests, and it revealed that there is still Leukemia in her bone marrow. Not enough to take her out of remission, but enough to categorize her as “standard risk-high”. There are 3 risk groups, low, standard and high, and within standard, there is standard risk-low and standard risk-high. We weren’t expecting this AT ALL.
SO what does this mean? She will have to have two extra months of intense chemotherapy. That won’t extend her total treatment time, it will just take two months out of her maintenance period (usually the last two years). AND…if we hadn’t enrolled Alexis in this clinical trial, they wouldn’t have found this Leukemia…the test isn’t standard, strictly for the clinical trial!! So thank GOD we had her enrolled! Otherwise her chances of relapsing would have been GREATLY increased, and by that I mean, more than likely, she would have.
So what’s next? LOTS of chemo. She had two different types yesterday, today she starts in-home chemo, where a nurse comes in and administers it through her port (we came home with it accessed). She will have in-home chemo wednesday through friday this week and next week. Plus she is taking a chemo pill every night for two weeks. Next tuesday, we go back to CHP for chemo and another LP.
They also told us that her hair will be gone by the end of next week. 😦 Her ANC (absolute neutrophil count) is down, so shes not allowed to go out anymore either. They also told us that the chemo can cause fevers, and as soon as she has a fever of 101 or 100.5 for longer than 2-3 hours, we have to go to the ER. They told us to go to Altoona and the will do bloodwork there. If her counts are ok, she can have an antibiotic and go home, but more than likely they wont be, so she’ll get transported to CHP by ambulance and we will be there until she has 3 days in a row fever-free. Basically, we are to expect that to happen. And we aren’t supposed to go back to CHP without a bag packed to stay, just in case. She will be needing more blood transfusions and platelets over the next few weeks because all of her counts will be dropping from the massive amounts of chemo she will be receiving.
Please keep praying, everyone!! We have a long road ahead of us, and it just got longer! But God is good!! 🙂
I’ve been telling you all how strong Ashley has been for Alexis and how amazing she is. I provide you with her words in this post so you can see for yourselves. This is not easy on anyone!
I do have one specific prayer request for you. I got to see Ashley and Alexis for a few minutes today (Ashley and I on the porch, and Alexis inside through the living room window). She was being her cute, sweet, and innocent self. She was full of joy and excitement. She was happy to see me and was excited to tell her grandpap (Ashley’s Dad) about my “scary hat” as she likes to call it! It brought such joy to me to see her so happy and full of excitement. Yesterday, we all found out that Alexis is sicker than the doctors thought, but after seeing her today, and knowing of the terrible day she had just been through, it showed me that she is stronger than we thought! She is a fighter…she is amazing…she is beautiful…and she is anything a mother could ever want in a child. Please pray that she will not lose her joy, regardless of what she goes through. Pray that she is able to remain happy little Alexis. This will help her mommy, her family, and those close to her to stay strong for her!
Alexis needs your prayers. Ashley needs your prayers. Their family needs your prayers. And I need your prayers!
Thank you again!