Carson had Chemo on Nov. 6th. We started the awful steroids. It was rough for a few days!
I have never got to snap a picture of his chemo, but I was able to snap a couple. It is odd how something that you are putting into your child comes in 2 plastic bags and the nurses use gloves and gowns to put it in!
Steroids cause him to not be able to sleep. So for 5 nights we stay up and try our best to get him to sleep.
We got to go to a Prom for a Sweet Girl Brylee. She does not have the best diagnoses; and will earn her wings soon. We went to a hotel for the Prom. And we were surprised to find Karl Malone there. he played for the Utah Jazz for over a decade. Carson called him Daddy's basketball man! :)
This time last year we were in the thick of it. It was rough. Crazy how one year can change so many things. WE are in such a better place this year.
Time To CELEBRATE GOOD TIMES!
Three years old. is he really 3? 3? It seems like I just had him. Oh how much I have missed of him growing up. But this day was all about him. And he ENJOYED it and Carson helped him have a "good" day. :)
I was so happy to have Blake have his day! A day just about him!
I was able to help swab this 200 packets to register for the Bone Marrow Registry. 200 people that COULD be a match to another child out there! if you want to become a match, you CAN save a life, and it maybe a life of a child fighting cancer, and our family may know them. Because we are in this awful "club" of cancer, and will never get out...So we embarrass it and will do our best to help others through out their journey while leaning on them when we need.
Now for the BIG update!
We are going to Children's Hospital of Philadelphia. This was not going to happen till January. But; Carson has had some struggles breathing. He has stopped breathing a few times... one when we were in the car, My heart can not take much of him not breathing. Before It was a fear that it could happen, he has not stopped breathing since he was an infant. So I had become Okay with how he was and comfortable you could say; but I was reminded not once, twice or even three times... but 5 times in the past 2 weeks how scary and fragile life can be!
So Why are we going to CHOP?
CHOP is the BEST hospital in the country. It has doctors and specialist for airway issues that we just do not have here in Utah. When talking with our Pulm out here, the first of Oct, he said it would be a benefit for Carson to be seen out there, so had planned to go in Jan; even had dates of Jan. 16 to fly out. and get testing and such done! But because of his breathing episodes we are going much earlier.
So what will be doing in CHOP?
They will be doing a list of things. We will see 6 new doctors. 6 more to add to our list of 5 here. We will meet with doctors when we first get there. They will go over things, and ask questions, and go over his scans that we have done here. They already have got his records, and all the notes and such from here.
Our hope is Carson will be able to start a medication that will harden and strengthen his soft tissues, it is used all the time on adults, but CHOP is one hospital to use it on kids, or PEDS. They are not sure how a child's body will respond to it, so it is a medication we will have to watch and monitor closely. In order to have this medication prescribed; we first have to have a Lung Biopsy and multiple airway biopsy's done. They will do culture testing, and some other tests while we are there. It is a long list of things, to do in a short visit. CHOP was super accommodating and fitting us in on short notice, and also getting all the tests and such done in a short time!
We have been blessed to have so many help us! People reached out to help that I am just overwhelmed with the support. With out each of those who have reached out to us, we would not have been able to make it out there in such a short time, and right before the holidays. So THANK YOU so much to each of you who have helped us. It really does mean so much to us; and it is not just the money or the donations that mean the world to us; it is the support; knowing we have an army behind us thinking of us, and helping us cope, and chug along this long road of not only cancer; but now his airway.
So Next month we will have CHEMO... and then a few weeks later head to CHOP!
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