Kennedy had a pre-op lab draw this morning which brought back some good news. Now that her bone marrow is free of Leukemia, it is producing its own platelets and healthy white blood cells. Her platelet count was in the normal range and while her white blood cells were still low, they are recovering. Her ANC, her immunity wbc, were at 260; normal is over 1500 but this is increasing substantially from where she has been. Her red blood cells were critically low so she received a transfusion today to prepare her for tomorrow. Dr. Chu said that when the bone marrow begins to produce healthy cells it always produces platelets and wbc first so the fact that her rbc were low is normal and expected. Everything looks good for tomorrow’s surgery. Both Dr. Chu and Dr. Norwood believe that the joining of ch 9 to ch 19 are insignificant to Kennedy’s treatment but are waiting for a final report back from the Children’s Oncology Group. There were some changes made to her treatment plan by the research organization but they are minor-they needed me to read the changes and initial that I understood them so they could continue her treatment plan. Dr. Chu said that Kennedy was the first child they had placed on this particular program so they are very interested in any side effects and her response to treatment. She was chosen to take part in the DH program which has the strongest and highest levels of treatment but also the most severe and long term side effects. I guess there has to be a trade off somewhere.
Kennedy is feeling anxious about tomorrow. She knows that her “straw” will be coming out and a port will be placed in her chest. She has asked to keep her straw (Pick line) because it is familiar and safe but we have been telling her about all the wonderful things she will get to do now that she will have a port such as swimming, taking a bath without worrying about her bandages getting wet, no bandage changes, etc. She is not convinced. Of course, the whole idea of “going to sleep” and that sense of losing control is probably most upsetting to her. Please pray for her during her surgery (1:00 pm) and during her recovery. She will also be having a bone marrow aspiration and lumbar puncture with Methotrexate directly into her spinal fluid. The last 2 times she has had a lumbar puncture, she has had a terrible reaction and a lot of pain.
She is still waiting for her hair to arrive via UPS. The doctors and nurses are amazed that she has so much of her hair left. It is getting patchy but because it is chin length, we have been able to conceal it well. They have said that most kids are bald by this stage. They assured us that she will lose her hair during the consolidation phase though. Of course, we still don’t know if we are doing two more weeks of induction or moving to consolidation. We did find out though that during the 2 months of consolidation, Kennedy will be going to Emanuel every Wednesday, Thursday, Friday and Saturday for chemo in addition to taking daily medication. That ought to be a blast 🙁
Austin is doing better-of course school will be out next week. The hospital Child Life staff allowed us to borrow a video titled, “Why, Charlie Brown, Why?” about Linus’ friend Janet who has Leukemia. It generated a lot of discussion and compassion for our family and helped the kids to understand why Austin shaved his head. Now his best friend, Skyler, and a few other kids want to shave their heads to support Austin and Kennedy. There are wonderful things about going to a small school. Baseball is over 🙂 and things are slowing down for Austin. He is looking forward to playing with his friends this summer, riding his bike, and going to work with his dad.
I can’t say enough wonderful things about Keith. He has really been my rock through all of this. When I became overwhelmed he stepped up and made the decisions and coordinated Austin’s schedule to ensure that things remained normal. Without him and my mom, I would have been lost. I have been amazed and delighted by Keith’s leadership and absolutely in awe of his sensitivity and devotion to Kennedy. He has truly honored his family with his presence.
One quick note to Christy, thank you for allowing Kennedy and I to use your unpadded sling. Between the sling (which is so easy to use) and the Baby Bundler, Kennedy and I have been set and both have made our life in public so much easier! Thank you everyone for all of your help, prayers and wonderful messages.
Keep praying and loving Kennedy-God is blessing us beyond our dreams through this with guidance, direction and overwhelming love.
Melenie
