Last Thursday Brody started a new protocol called Delayed Intensification. It is a two part protocol, Delayed Intensification parts 1 and 2. Each part is 28 days long with outpatient visits weekly plus chemo at home by both mouth and shots. The first part, which Brody started last Thursday consists of 4 different chemo drugs and a corticosteroid. On Thursday he had a spinal tap with Methotrexate, IV Vincristine and IV Doxorubicin for chemos. He also started a 7 day course of Dexamethasone at twice the dose he had during induction. The Doxorubicin is a new drug for Brody and can have some serious and long term side effects, specifically to his heart muscle. He only has to have 3 doses total but the risk is both real and very scary.
Our first actual appointment at Comer went off without a hitch and the team and the rest of the staff were great. The spinal tap was done under sedation rather than with fentanyl like at Lurie. This worked out very well, Brody didn't even realize it had been done when he woke up. The whole process took less than an hour and saved him, and us, a lot of stress and anxiety not to mention pain. After the spinal tap he was given both the Vincristine and the Doxo. We hung out for a little bit, he was deaccessed and we were on our way.
Before we left the hospital the Doctor warned us that by Friday or Saturday Brody would probably be feeling pretty poorly. Between the three chemo drugs and the high dose of steroids we were worried and feeling bad for Brody, especially since Friday was his birthday. I did talk with Brody about the side effects of the steroids and that some of the emotions and feelings he might have are out of his control and that he shouldn't worry. He told me he remembered how miserable he was that first month and that he wasn't going to feel like that again. He decided that if he started to get mad or crabby he would simply go into his room and read or relax for a little while until he could calm down and gather his thoughts. I was so impressed that he had the foresight to make a plan to help avoid problems.
Luckily Brody is a superstar and as of tonight has shown no signs of slowing down or any of the negative side effects. Since Thursday he has done SO much. On Friday he played all day and in the evening we had a few family members over for his birthday. He spent that whole evening riding the new dirt bike that he got for his birthday (he can ride as long as his platelets are high enough!). Saturday was more of the same, the boys played outside from sun up to sun down. Brody slept through the night and Sunday by the time I got up and had my first cup of coffee the boys were begging to go to the water park. I was slightly hesitant, Brody is still having trouble with the Vincristine induced peripheral neuropathy making it difficult to walk and use stairs. We decided "what the heck" we were just so happy that he was feeling well!! I could not believe how well he did. The first thing he did when we got there was insist on going off the high dive, I am not an over protective parent, but between him climbing the ladder, jumping and having to swim to the ladder I was a little worried. It was a bit of a struggle for him to climb the ladder but he did and without hesitation jumped right in! The rest of the day he went on every slide for a total of at least 20 climbs up many flights of stairs, he did the ropes course a dozen or more times, he even helped Tyler climb the rock wall. It was an amazing day and really good for exercising his legs! He is so positive, when climbing the stair tower for the slides all of the other kids were blowing past him as he struggled a little to climb the stairs. He never complained or lost that giant Brody smile the whole time.
The next day he woke up and still felt quite well but was tired. Monday was the only day this protocol that he had to go in for an extra day of treatment. He had to go in to get Pegaspargase, which he has had before, but is more concerning each time he gets it. It is a drug that many children develop an allergy to the more they receive it. The reaction can be minor or all the way up to full anaphylaxis. The scariest part is that the drug is long acting and the reaction can come on days after Brody receives the drug. The hospital gave us Epi pens as a precaution, I hope and pray we never need them. Even though Brody was tired he still had enough energy after treatment to go for dinner with Gina, Tyler, and his grandma for a steak dinner of course.
Today the boys were still asleep when I left for work and I was really worried that Gina would give me bad news when he got up. Much to my delight he was in a great mood and feeling good when he did wake up. So good that he went to his swim lessons (we thought we would have to cancel them, but signed him up just in case this exact thing happened). Both of the boys had swim lessons and then they convinced Gina to let them stay at the pool all day. After they went to my mom's for a few hours.
When I got home from work they boys were playing and laughing and I can't imagine anything better to brighten my mood!
Brody is of course sleeping right now. He only has 2 more days of steroids then a week off. There are still 7 more weeks of this protocol and we are realistic that this feeling may not last, but everyday that Brody feels well is a blessing and we will take it!
It is hard to believe that Brody has been battling this for over 6 months now, he has matured way past the 7 year old that he now is. He continues to handle everything that life keeps throwing at him and does it with a smile. He still has never once used his disease as a crutch or an excuse, he never has once said "this isn't fair" or "why me" and god knows I have thought that enough for him in my head. That is just another part of what makes him such an extraordinary young man and a fantastic role model to Tyler (and myself and Gina). I have learned how to be a better and stronger person from my 7 year old son, I am so proud of him for showing me how.
We hope this continues but we are prepared to be there for him if and when he starts feeling worse. Brody knows that this is the last of the really nasty protocols and he only has 7 weeks of it left.
Thank you all again for your continued support for Brody and our family. Good night.