For the last two months, Harry has been walking with a limp. It is something that comes and goes and sometimes leaves him immobile on the sofa. In July, I mentioned that we were very nervous because of the possibility of AVN - avascular necrosis. Steroids used in chemo can cause a lack of blood flow to bone tissue, causing bones to collapse. This is irreversible and only a bone replacement (such as an artificial hip) can help.
The MRI, fortunately, came back clear. But the pain was still there. An X-ray over the weekend again showed no damage to the bone. But a pulled muscle would be healing by this point. So a visit to OPSOM (our Patron Saint of Medicine) Laura Tosi was due. She quickly assessed that Harry's mobility was reduced, indicating the possibility of the return of Ankylosing spondylitis.
As you may recall, Harry's medical issues began over five years ago with this auto-immune condition. The disease had been contained through the use of Humira, an auto-immune suppressant. Once Harry was diagnosed with cancer in May, he went off of Humira. Autoimmune suppressants have been linked to increased incidence of cancer. So without Humira, Harry may have significant pain and limited mobility. With it, cancer. Kind of a "Sophie's Choice," isn't it? On October 7th, we go back up to Children's Hospital of Philadelphia for an assessment. But the good news is the 2nd best new restaurant in the country (according to Bon Appetit) is High Street on Market, so that's where we will be dining.
In addition, Dr. Tosi thinks a hernia may be causing additional pain. So now we get to add a general surgeon to the team. I think there are only three specialists haven't yet been asked to see, so out of superstition, I am not even going to write them down.
This week, Harry decided to "harpoon the whale" and address his cancer in a speech at school. At Sidwell, there is a weekly Quaker meeting for worship that gathers the entire high school together -- students, teachers, and faculty. Students can sit silently or get up and share something of importance to them. After three weeks of stares, whispers and uncomfortable weirdness, Harry decided to say something. I was not there -- and Raina was actually out sick -- but I heard he combined humor, sarcasm, and facts about what he has, how he feels, and what never to say to him (such as trying to show empathy by mentioning dead relatives who had cancer.).
At first, the students did not know whether he was serious or joking (especially when he opened by denying the rumor that he was a skin head) but eventually he found his balance and everyone knew what was a pure joke and what was being said as a joke but had gravitas.
I cannot imagine at 15 speaking before an audience of over 500. And, I cannot imagine how he feels each day walking into school. We had back to school night on Thursday and I tried my hardest to keep my eyes to the ground, running plays like LeSean McCoy, to avoid looks of pity and naive comments. A big thank you to my friend Frances who said the truest thing of the night. "You always seem to be in good humor but you must be going through hell."
The MRI, fortunately, came back clear. But the pain was still there. An X-ray over the weekend again showed no damage to the bone. But a pulled muscle would be healing by this point. So a visit to OPSOM (our Patron Saint of Medicine) Laura Tosi was due. She quickly assessed that Harry's mobility was reduced, indicating the possibility of the return of Ankylosing spondylitis.
As you may recall, Harry's medical issues began over five years ago with this auto-immune condition. The disease had been contained through the use of Humira, an auto-immune suppressant. Once Harry was diagnosed with cancer in May, he went off of Humira. Autoimmune suppressants have been linked to increased incidence of cancer. So without Humira, Harry may have significant pain and limited mobility. With it, cancer. Kind of a "Sophie's Choice," isn't it? On October 7th, we go back up to Children's Hospital of Philadelphia for an assessment. But the good news is the 2nd best new restaurant in the country (according to Bon Appetit) is High Street on Market, so that's where we will be dining.
In addition, Dr. Tosi thinks a hernia may be causing additional pain. So now we get to add a general surgeon to the team. I think there are only three specialists haven't yet been asked to see, so out of superstition, I am not even going to write them down.
This week, Harry decided to "harpoon the whale" and address his cancer in a speech at school. At Sidwell, there is a weekly Quaker meeting for worship that gathers the entire high school together -- students, teachers, and faculty. Students can sit silently or get up and share something of importance to them. After three weeks of stares, whispers and uncomfortable weirdness, Harry decided to say something. I was not there -- and Raina was actually out sick -- but I heard he combined humor, sarcasm, and facts about what he has, how he feels, and what never to say to him (such as trying to show empathy by mentioning dead relatives who had cancer.).
At first, the students did not know whether he was serious or joking (especially when he opened by denying the rumor that he was a skin head) but eventually he found his balance and everyone knew what was a pure joke and what was being said as a joke but had gravitas.
I cannot imagine at 15 speaking before an audience of over 500. And, I cannot imagine how he feels each day walking into school. We had back to school night on Thursday and I tried my hardest to keep my eyes to the ground, running plays like LeSean McCoy, to avoid looks of pity and naive comments. A big thank you to my friend Frances who said the truest thing of the night. "You always seem to be in good humor but you must be going through hell."
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