Thursday, April 8, 2010
Zach is in NYC
Dylan is continuing on the Perifosine/Temsirolimus study. After week 2 he started to get pain in his legs and now that pain is quite severe. He cannot walk more than to the end of our street without the need for a wheelchair, thus school has been put on hold until the end of the 2nd cycle as the stairs at school are completely out of his capacity right now. Depression is the other side effect we did not anticipate. He is very tearful over little things and is loosing interest in the things he use to do to occupy his time. His ANC also drops and requires GCSF injections from time to time to get those neutrophils back up, but the rest of his blood counts are ok. We sat down and talked about the side effects at week 4, I explained to Dylan that he had a choice whether to continue the study and provided him with the options that were in front of us. Dylan being the medically wise soul he is, decided to push through and complete the 8 weeks (2 cycles) of treatment until the scans are due to see if it was worth continuing. We are now at week 6 and scans are scheduled for week 8. The weather has finally warmed up and we now have the option to venture out when time permits. Dylan often accompanies me and Bear to the dog run and it does give Dylan a smile watching the dogs play, they live in the moment just as we do these days. Bear is great therapy for our whole family, and he is everything we wished for in our family dog. We still have very strong ties with the Ronald McDonald House even though we now have our own place. Regular visits from other cancer families always visit when they are in NYC. Most recently we saw Skyler and right now Zach is in town (photo above) We also get to stay in touch with families during our weekly hospital visits. Sadly this tie also means we continue in the loop of loosing children, the tears still fall and the pain in my heart feels the same as it did when I lived in the RMDH for 5 years. Most recently we lost Jess and Andrea, and over the next 48 hours we will loose Sandra. Sandra's passing will be a huge loss for Cain as she joined the band group regularly and they made good friends. Sandra is blessed with an amazing creative talent, she draws, paints and plays the piano. I just broke the news to Cain in preparation and he stayed very quiet and I could see his eyes tear up but he held them back. Cain holds a lot of this cancer life deep inside. He never expresses his pain but I know that in his own way he deals with it, particularly by throwing himself into his bass playing. He said that the band will dedicate the recording coming up in her honor. You can read about Sandra in this RMDH publication, she is on the cover. Click HERE ( story on pages 8-11) Please pray for her family for strength and peace. Also pray for little Ylaria a beautiful little girl with the cutest smile ever, the sweetest and most loving family, they struggle with very hard decisions and news no one wants to ever hear. I need to update the house heroes page, which I have to admit I have been avoiding, the pain in my heart is horrible, moving children I love to the Angel's part. Jess returned the the RMDH on a regular basis, was with us at Disney World and shared our love of animals. At the same age as Dylan and fighting for so many years, brings a harsh reminder of fears that I try my hardest to push away every waking day. Andrea was with us the day Dylan met the Pope, one boy and one girl were chosen from RMDH to meet the Pope. Naturally a bond was formed between us and her mother and I made good friends. Andrea also shared a love of animals and was always involved in the therapy dog events. I ask myself why these children keep dying, why I feel like I cry every week over yet another loss. I try and mask it with wise sayings, comfort myself with knowledge of a better life after they pass on, but you know what, at the end of the day it sucks....it sucks big time.