Monday, June 2nd, 2008 by Deb Schwedhelm
According to Max’s Mom, Melissa, today was Max’s last day of chemo for this cycle (for a week or so) and his last day of radiation for a while. I’m not a cancer/radiation expert (by any means) and I’m sure more information will be posted on Max’s regular blog, but from what I understand, radiation (and chemo) really takes a toll on one’s bone marrow, so only so much radiation can be given. And this is why Max has been needing relatively frequent blood and platelet transfusions. He received both, platelets and blood, last week and again today. Today, Max’s hemoglobin was 6.4, when normal range for a child his age is 12-14. So Max’s blood counts were really low.
When I arrived at Rady Children’s Hospital today, platelets were done and red blood cells were on their way. Max was reading. Melis and I began talking a bit and Max quickly told us to be quiet because he was reading. I was secretly glad he told me to be quiet because I went in today thinking, I have to try and not talk much so I can truly just capture what naturally happens. Of course, I AM there; I will never be invisible…but I hope that as the weeks pass, my camera and I will become less and less noticed.
His face looked puffy and he was pale. I was sad to see him so puffy. I asked Melissa if the steroids were making him puffy. She said that he’s now off the steroids and a lot less swollen than he was. He must have started swelling after I had done the session last week because I didn’t notice much swelling when I shot him last. Max was a bit grumpy when I first arrived (I don’t blame him with blood counts as low as his were…anyone would be tired and grumpy). Here, he was getting upset because he didn’t want any visitors. That was my cue to step back and give Max his space and well…shut up.
Then the blood came. It’s nothing for Max. He just continues doing what he’s doing, completely unaffected by the nurse and what she’s doing.
After a while, having just recently learned to read, Max got tired and asked his Mom to read the book to him. It was so wonderful to see. He listened…and kept his eye on me. One of the things to keep in mind is that, when getting blood, Max is there for at least 4 hours…that’s the minumum. Often it can be more like 6-7 hours.
[max’s dad] Whether you view these pictures as sad or normal, for Max he has recently began to look forward to “hospital days” for the reasons you see below: mom reading to him, kicking back on a bed, his WWII books and “Bruce” nearby. What 6-yo boy at some point in his day wouldn’t rather be doing what Max is doing instead of sitting in a classroom?
This is Max, while he was listening to his Mom read to him. I’m not sure why but he was messing a lot with his mouth and lips today. I don’t know if it was just a habit thing or maybe a developing sore or something. ETA: I spoke to Melissa after posting and she told me that with Max’s platelets being so low, his lips become dry and chapped and he ends up messing with them. He doesn’t have any sore.
As I’ve said before, Max always lets me know when he’s had enough of me and my camera. That’s enough pictures for today, is usually what I hear. And I listen. I always ask him for one departing shot and so far, he’s always given me that one last shot…where he looks at me and smiles. And when he does, I always melt. Okay…so I took two. I couldn’t resist taking a photo of him with his shark, Bruce, who he brought with him today. But Max let me know that I took two…not one last shot, like I asked 😉 I told him that I couldn’t help myself b/c he’s so darn cute.
[max’s dad] I’m struck by how pale Max looks in these photos. Part of that is b/c Max is laying on white sheets… with a light-tan shirt on… under bright flourescent lighting. But Max is our white boy for sure. Just recently we were all outside in our front yard, and Max is looking around at his family and all of a sudden said something like, ‘I have the lightest skin in our family.”
I wanted to close with something that I read off Will’s blog today (from a post on September 20, 2006, about their son, who is also battling relapsed neuroblastoma)…
According to the head of the pediatric oncology program at Dana Farber this means that Will is now classified as ‘incurable’ and the best we can hope for is to delay the inevitable with various kinds of treatments.
This is what these parents are dealing with–not trying to cure their child of this cancer. No, they have already been told that that is not possible. What they are trying to do is buy time and as Will’s Dad stated, delay the inevitable, or hopefully discover some miraculous treatment that can stop the tumor(s) from growing/spreading and let these children live their lives into adulthood. But, this will never happen without funding and research. I hope that I can do my little part in bringing awareness to neuroblastoma and hopefully funding for additional research–in hopes of one day finding that miraculous treatment that will let these kids live.
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