There is very little good news for families fighting childhood cancer. I wanted to share a picture representing some good news for Harrison's fight. He has a rare form of pre-B ALL (translocation never-before seen). DX December 2011. His love is baseball. When he was diagnosed the doctor said he wouldn't be playing this spring. He was devastated.
As you can see from the picture, he was determined to play. Many times he's had to go out behind the dugout and throw up, but he's only missed one game all season.
We are halfway through Delayed Intensification (COG 0232) and he's handled the doxo amazingly well. The dex messes with his mood and gives him hot flashes, but no major issues. About to go to the Ara-C, which makes his counts drop precipitously. His leukemia is resistent to aspariginase (and it caused it to have a stroke during induction) so he doesn't get it.
I hope this picture gives hope to new families fighting this terrible disease. Four months into frontline treatment Harrison began baseball. Last night he went 2-2 with an RBI and a run scored. Twice he has secured the win for his team by his plays in the field. He is my hero.
I am in tears...literally.
What a strong, courageous and beautiful young man you have here!!! I'm amazed that he is playing baseball during D.I...a true fighter! Our daughter was so weak and felt so bad during D.I. last summer that we spent a lot of time on the couch just vegging, unfortunately. She too loved soccer and was so saddened when the oncs told her that she would not play last fall (she was diagnosed in March, 2011). She developed moderate foot drop during Induction from the Vincristine, which she has battled ever since (we are 3 cycles into LTM now). She will probably never play soccer again due to the foot drop. She's so self-conscious about it and we do daily at-home physical therapy to help improve it somewhat. I won't give up the fight to help improve her foot drop!!!
I'm thankful that your son is able to continue doing what he loves so much! I can totally see why he is your hero...
Thank you for sharing. My best to you and your son during the rest of his treatment.
I am so sorry to hear of the side effects. Harrison would not be able to play soccer either; he has great difficulty running. He can walk fine (no foot drop), but runs hardly any faster than walking. The docs don't think it is a side-effect of the stroke, but may be. More likely the several weeks he spent in ICU following the stroke combined with the steroids he had during induction.
I hope the best for your daughter. I would LOVE to see a picture of her playing soccer again soon. Best wishes from Harrison to her.
When he was first diagnosed one of the docs (a fellow) said no sports of any kind. Harrison was devastated. Same doc also said no school during frontline treatment. No malls. Basically nothing but home and hospital.
A few hours later we mentioned how disappointed he was to our attending and he replied, "I don't see why he wouldn't be able to play baseball, just no football or hockey."
But, we've found we have a pretty relaxed oncologist about everything. He believes the more a kid can be "normal" the better for their recovery. His catch-phrase is, "Just use common sense." So Harrison doesn't play catcher, for example. We also had Harrison play machine pitch rather than play for his kid-pitch team, to lessen the danger of being hit. A younger kid (or new player) might just play the outfield, for example.
Harrison has a friend in the clinic with ALL who is the same age and is virtually at the same place in treatment (a few weeks from LTM) who also loves baseball. He has a different oncologist in the same practice who also said baseball is fine, just be smart.
We met a kid who is now OT who even played hockey during treatment (against doctor's orders, of course). His port got damaged in a hit, so the docs just removed it and he finished the last year of treatment using IVs.
It seems from what I've read that some docs place a greater emphasis on our kids' being "normal" than others. Certainly there are risks, but the reward of seeing the look on my little man's face when he plays is worth it (of course, within reason). He has lost enough due to this disease.
I am definitely going to talk to our doctors to see what our options are, and I wanted to let you know that I showed Harrison's picture and story to my son who was DX in March (so missed the spring season) and it made him so happy to see that this was even possible. In fact he went from moping on the couch to hitting wiffle balls in the backyard! Thanks again for sharing your inspirational story!
That is such WONDERFUL news. I showed Harrison your message and here's what he said: "Tell him he can do it. We have to fight and beat this cancer. I believe in him!"
If your son ever wants to talk to Harrison about his experience (just a few months ahead) he would love to talk on the phone or skype with him. Just let me know.
Best wishes to you and to him.
Great story about Harrison. I do echo about the "common sense" thing. When Chz was dx in 2007, his team of onc told him that home schooling is the only option. When he asked permission to watch a HS basketball game, he was told that he cannot. Against his doctors orders, he went to school (only missing 6 days during his 7 months intense tx) and watched a few basketball games. He did everything what a normal teen should be doing --- with great caution and a lot of common sense.
Now that he is over one year OT, he still exercises caution and a great deal of common sense. Although he is currently living and working in Dublin, Ireland for a summer internship, he is cautious in the amount of alcohol he consumes - where the legal drinking age is lower. As his father, there is nothing I can do to prevent him from having fun. After all, he has gone thru a lot.
We never had our son live in a bubble while on tx. A year and a half into his protocol, we even allowed him to participate in his school's Swiss exchange program. It was a blessing that his host family in Zurich for that summer was a physician.
All the best.......
So glad you shared this! I think a lot of us see our kids so sick in the beginning that it's hard to imagine that it won't be that way throughout treatment. Even when your child is neutropenic and can't go outside, you can still have FUN! Thanks for reminding us that life does go on and that it's up to us how we choose to live each day.
Oh, and you are so right. You do still have to give them a childhood and let them be kids. Way to go!