With all of the new baby excitement I realized that we haven't mentioned much about Charlie's treatments and his progress. It's nice to have something other than Cancer to talk about with the arrival of Daniel, but for those of you wondering, this is what's been going on.Charlie is in the third of the five phases of his treatment called Interim Maintenance. He goes every 10 days and has gone in for two treatments since Daniel was born. On the Monday before we went in for the c-section Charlie went in for the third dose of Methotrexate. He always has a blood draw before they give him the drugs to see if his body is strong enough to tackle another dose. His ANC was 912, which is pretty low for him. Anything below 500 and they don't give him the meds and we are delayed in the process until his numbers go back up. During this visit we met a special lady named Miss Pat. Pat is a staff member who organizes therapeutic art sessions for the patients such as drawing, music games and other fun and creative (and distracting) activities. Miss Pat and Charlie played one on one with stickers and markers before and during his port access. Charlie is still VERY UPSET when he is initially accessed, meaning when they put the IV needle in his chest for the medicine to go through. Its scary for him to be stripped of his shirt and held down while the nurses come at him with a small needle called the butterfly. Miss Pat was able to distract him a little bit, but we are working on his acceptance of this new process. Above is a picture of Charlie and Miss Pat.
The week after this chemo visit Chad and I were in the hospital and Charlie stayed with Nana and Grandmommy and Granddaddy until we came home on Thursday. They reported that Charlie had very little side effects, mainly that he tired easily. We anticipated that with his ANC being so low (912) that the next visit this past Wednesday might result in us having to skip a treatment. The doctors thought this might be the case as well and had us come in on Tuesday for a quick blood draw before his scheduled lumbar puncture and IV chemo scheduled for Weds. To our surprise his ANC was over 1900! So we continued with the plan. The big news from Weds appointment was that the Oncology staff got to meet Daniel. All of the nurses had been taking bets for the last 3 months on whether Baby Hooper was a boy or a girl so they we excited to meet and of course hold a newborn baby.
We officially have a new "Baby Snatcher," it is no longer Aunt Lisa, Its Charlie's dedicated nurse Sally. She picked up the baby and took him for a walk while Charlie was being prepped for his port access and procedure. Sally took Daniel all over the outpatient clinic showing him off while he slept peacefully in his arms. It helped Mom and Dad focus on talking Charlie through the scary parts of the visit.
The next night Charlie was very sick to his stomach. They step up the dosage of the Methotrexate with each visit so he had more of the medicine in him then ever, so more side effects this time. We cleaned up alot of vomit before the anti-nausea medicine kicked in. Charlie's energy level seems to be normal, his hair has thinned a bit more, but no serious baldness to speak of. Other than the upset tummy and a decreased appetite, things during this phase of treatment are going pretty well. We've even dodged the looming constipation side effect that hit full force in phase 1. He's also on the drug from phase 1 that contributed to that lovely adventure.
Next visit is in a week. After that we have 2 weeks of no visits then on to phase 4, Delayed Intensification. It sounds intense with something like 8 different chemo drugs all at once. Natalie the nurse practitioner talked to us a little bit and mentioned that this phase has shown to increase survival rates by 25%!!! No matter how bad it might be, it will be worth it in the long run.
As a side note, during Daniel's delivery we were able to harvest cord blood. If Charlie ever relapses with the Leukemia then the next step would be a bone marrow transplant. We could possibly use Daniel's cord blood if it is a match for Charlie. The University of Colorado Health Sciences center will process and store the cord blood free of charge for 15 years! Thank you Dr. Quinonnes and Dr. Johnson for helping us through this process. I hope we never need to use it, for either child.
