Tim and Cain left for Australia on Sunday night. We spent Saturday night and Sunday morning together at Long Island with the Maynards. Qantas did a great job looking after us, thank you to Josh & Jim. Qantas made us very comfortable in the lounge area and also made sure that Tim and Cain got amazing seats on the plane. While I said goodbye to Cain, we were both very brave as Dylan had told me not to cry. I glanced over to Tim who was in Dylan’s arms, and I saw that Tim’s face was very red as he too fought back the tears. Then Cain hugged Dylan and as Tim and I held each other we saw that both the boys were crying. Tim held Cain’s hand and the next thing I knew they were gone and the boarding door had closed. I held Dylan and we both cried. Greg whisked Dylan into the toy shop at the airport, and by the time he returned, I had my brave face back on and Dylan was smiling, holding a new silver remote control BMW. Dylan and I returned to Long Island for the night where Lynn and Greg were my shoulders to cry on.
Monday morning we returned to hospital where Dylan had a platelet transfusion and a GCSF injection to help raise his counts. Dylan’s weight had dropped to 14.2kg and due to the post operative/chemo induced diarrhea, he is unable to retain any nutrition despite that fact that he is eating better, on Lomotil 3 times a day and appetite stimulants. It is also impossible to use his G-Tube as it seems the more liquid feed he has the worse it becomes. We will return to hospital tomorrow with the view to start TPN (IV feeding). Dylan hates the GCSF injections worse than the finger sticks, he screamed when the nurse put the Insuflon in his leg and then he screamed as I injected the GCSF. Tears then streamed down my face and I was so embarrassed. Since Tim and Cain left, every little moment makes me cry…it’s awful. As soon as someone asks how I am, the tears just start uncontrollably, it really is frustrating. I know it will pass, I just have to find that independent strong women inside me again. Dylan and I headed back to our room after hospital, then Dylan slept most of the afternoon, waking at 5:30pm and requesting Burger King! We then walked 13 blocks to 86th street in the pouring rain to fulfill his craving. Dylan was fine under his storm cover in the comfort of his stroller, but I was soaked…the things I do!!! Dylan’s weight is really worrying me, I need to build him back up strong before the next lot of treatment so any request for food, I deliver as best I can.
After a night of constant hourly trips to the bathroom, we returned to hospital. Dylan’s weigh in showed he is now at his lowest ever weight of 13.9kg or 30.7 pounds. After blood tests and a consultation with the nurse practioner, it was decided that at 7:30am tomorrow morning Dylan will be admitted for TPN. Hopefully it can be arranged for Dylan to have his TPN back at Ronald McDonald House so that it minimizes the cost. As TPN is tailored to each patient’s nutritional needs, Dylan will have to be hospitalized for at least 3 days with regular blood tests to make sure all the TPN levels are correct. I anticipate that TPN will be required for at least a month to get Dylan’s weight back up to an acceptable range. After a few more weeks the side effects of the Irinotecan should wear off and the diarrhea should ease enough for me to start using the G-Tube again.
This evening at Ronald McDonald House, Dylan spent an hour doing the evenings activity of making flower baskets for mother’s day. He was so eager to make me a flower arrangement and he even drew me a beautiful picture to go with it. We spoke to Tim and Cain when they arrived home safely. They said the flight was great even with a 2 hour delay in Los Angeles due to electrical problems. They are having trouble adjusting to the time difference though, Tim told me that he woke up at 3am and was having his morning coffee by 4:30am this morning! Then Cain woke up a 5:30am! Hopefully if they stay up late enough tonight they will set their body clocks back to Australian time. We all miss each other terribly already but we are all focused on why we have to be apart and what we are striving to achieve. Dylan’s spirits a great, he is handling it all so much better than I am, then again he handles everything better that the whole lot of us put together.
