Shane’s Future Days is a 501(c)(3) non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395 .
Yesterday we finished Shane’s 5 day outpatient treatment. I am so thankful that we only have to be inpatient for one of his treatments since we are now confident in doing this 5 day one outpatient. It is a long week and takes it toll on our little guy. He NEVER sleeps while we are there, even though he can become a grumpy monkey and wants to sleep. This is either from the chemo (which tends to rev him up) or the fact that he is too nosy to go to sleep.
Monday was our longest day because he needs to go to triage, get his port accessed (it then stays accessed all week), see the doctor and get the chemo ordered. It was a 9:30-3:30 kind of day. Shane kept busy roaming the halls, introducing himself to new people and just making himself known. Tuesday he got a private music session from Mike the music guy. Shane LOVES music. He sings and sways as Mike plays the guitar and sings to him. Wednesday was hump day and Shane was not happy. He howled a lot and couldn’t get settled. He spent most of the day in the ergo carrier. Thursday he was content munching on his pink strawberry bagel and just roaming. Friday was great because daddy came and it was super helpful to have him there.
I met another family this week who were at CHOP for radiation treatment from north jersey. Their son has the same cancer as Shane. I have never met another child with the same one, as it is extremely rare. Their son is 6 and bravely endured 6 weeks of proton radiation and will continue on in his journey as we will ours. It was good and educational to speak with someone having to go through the same thing, with the same cancer, even if their ages are vastly different.
Next week, we’ll be back for his regular 15 minute treatment. Fingers crossed for no transfusions and a fast day.
We had a terrific week. Shane only had blood counts this week, so no chemo. We bypassed a fever scare from possible teething, but I won’t lie- it was stressful. He did not need a blood transfusion and continues to grow more peach fuzz. Next week, we begin another five day treatment. Fingers crossed for no abrupt doctor meetings or side effects. Thank you for your continued support. We are still working on our thank you’s, but please know how much we appreciate the kindness and generosity that has been given to our family.
It’s been awhile since we’ve updated. Life has been busy and it’s hard to believe it’s been 2 weeks since Shane turned one. On the 14th we began a 5 day treatment and completed it in the day hospital as an outpatient. It was successful and I don’t feel we have to be inpatient since Shane had no side effects. We were able to come home and spend time with the family. It is extremely difficult to keep him occupied now that he is mobile. Those few times we have to be inpatient will be spent aimlessly wandering the halls just to keep him busy. This week was a 15 minute treatment and while most of us thought he would need a transfusion, daddy was right and he didn’t! Shane was looking a little pale, but they believe we just use good sun protection (true)! In the past weeks, we’ve been reminded to enjoy each day. Shane is doing great and continues to impress them with how well he is doing. While we thought certain changes might be made to his treatment schedule, we were informed that it’s not in the cards. It was a blow to us, as our anticipation and hopes were crushed…but just for a little bit. We are still moving ahead with the plan, which is working and Shane continues to thrive. We believe in our little guy.
THANK YOU to our family and friends who traveled near and far to help us celebrate Shane’s 1st Birthday. It was a big victory day and we were so grateful and blessed to share it with all of you. Thank you for all the emails of birthday wishes for Shane. We set up a Time Capsule for people to make a prediction, write a wish and/or give advice for his future. I will include those in it.
Tomorrow we start Round 2 of treatment. It’s the week long one. This time we are going to try it outpatient instead of inpatient. He seemed to tolerate it well and who doesn’t like sleeping in their own bed without the constant beeps, and nighttime wake-ups?