General Update
We arrived at CHOP at 8:30 for Blaise's pre-treatment surgeries; "the port," "G-tube" and a the fertility study test.
Yes you read that last test correct we are talking about fertility in a 3 year and 51 week old child. It makes perfect sense, maybe not yet. The research shows that boys that go through this type of treatment have the potential to fertility issues later in life. The study focuses on teenage boys (post-pubertal I think), and the research has just shifted to younger boys (pre-pubertal) because much less is known about the treatments effect on them. But forget the science, the religion, the political views for a minute. Blaise is doing a fertility study because in the future he will reach the age where he could potentially want/need to be fertile. We signed him up for this study because Blaise is going to have a future. We're not just focused on the now, we're "taking the long view" as Oscar Romero would say. But i don't think he meant it like this. Sure this sucks right now, and as his dad my heart breaks every second I see him in that hosptal, but my heart will be whole again when he is fine in a few short months. And I guess then my heart will break again with each stage of his life, as it already has for these few short years. But I digress...
The procedures went rather smoothly from all accounts. The port, where his chemotherapy will be administered, was placed in his upper right chest. The doctor could not attach it to his exterior jugular vein (I guess that's a thing) even though he said he could "Get a garden hose into a piece of hair." But he placed it on the interior jugular vein, which actually makes for less travel for the medicine to get into his blood stream. The G-tube was placed on his lower left belly. Yes, belly is the medical term! The G-tube will be used for supplemental feedings and potentially to administer some meds at home. We put this in now so that we would not need to fight him down the road to eat and he can maintain proper nutrition. Blaise's doctor said with the tube, eating becomes a hobby, funny I already thought it was.
Blaise was struggling today, no lie. He was in pain, but then again who wouldn't be? We're set for tomorrow, and the start of chemo!
Road Map
After the surgeries we made a trip to 3 South. So Blaise and I got to see where mom spends all her time when she's not home with us! And we met with the doctor's for our "Family Planning Meeting." This was cool, it really put things in perspective for me, a total outsider. Basically treatment is broken down into 14 cycles, with a femur surgery thrown in the middle. Each cycle will last about 2 weeks, although nobody holds to that schedule! The odd cycles give 3 drugs over 2 days and the even cycles give 2 drugs over 5 days, After the drugs are given, he rests, waits and then the doctors see how he responds. He'll have nausea, lose weight and yes he will lose his hair. There will also be things happening we cannot see. However, I was reassured that during this next couple of months Blaise will be himself. Sure the medicine will take its toll, but he'll have days where he is the same wonderful kid we all know and love, just without hair.
Honestly, this is the part I am dreading the most. As his dad, I cannot do anything to help his pain, or make him better. And these drugs are causing pain, but making him better. How do you explain this to a 4 year old? We are just there to be with him. Which is not comforting to me, but I hope its comforting to him!.
Thank You
Today was tough, but very comforting. This is the awkward part and the uncharted waters. But thank you to everyone. Thank you for helping with Lucy, for making dinners, cleaning the house or donating. Thank you for texts, the calls the prayers the masses and the mail. We have been blessed with great families and many good friends. We can't thank you enough from the people in Havertown/Broomall and across the globe, our friends from Villa and the Prep or Villanova and Scranton, your support has been truly been amazing. One friend is having a mass said for Blaise, and I cannot thank him enough, and shared the message the priests sent him and its just stuck with me all day. He said, " Today's Gospel: everyone was trying to touch the hem of Jesus' garment! I'll try to reach it for this child." I guess that's something we're all trying to do, just reach the hem of Jesus and know the best will come of it. Please know that where ever you are, and however we are connected we appreciate you and our words alone cannot express our sincere thanks, but THANK YOU TO INFINITY AND BEYOND!
And also, Lucy is still holding strong. Every morning she wakes up and does a roll call: Mommy, Daddy, Blaisey and Bots (her bottle).
Thanks and keep Blaise in your thoughts and prayers!
