I know some of you will cringe when I tell you this, but we put our tree up last weekend. I can hear the cries of outrage now. You put the tree up before Thanksgiving?!?!?! Yes, we did. Bram's next MRI is in January. It's the first of the six month interval MRI's. I can't lie and say I'm not worried about it. We've been looking inside his brain every three months, checking on it. Now we're waiting six months to see what's going on in there, and quite frankly, it's scary. What if it's back? What if it's been spreading all these months. It's hard not to consider that possibility. Anyway, I don't know what January holds for us, so I just thought it would be nice if we had an extra long Christmas season at our house this year. And so our Christmas tree is already up.
Now back to Thanksgiving. Well, I had hoped to take a trip down to San Antonio for Thanksgiving this year. Our budget's a little tight since buying the house so I'm not sure I'll be able to swing it, but I haven't given up on the idea yet. I suggested to Bram the other day that we might not make it down to Sea World for Thanksgiving, and he got pretty upset. Apparently he is really looking forward to touching a dolphin. He was a little too intrepid to feed them/touch them the last time we went (after his final round of chemo). I'll just have to see if I can pull a rabbit out of my hat. Make that a dolphin out of my hat.
Bram is doing really well in kindergarten this year. He just made reading level 1. He is now reading a book every night, and I am just so proud of him. He is one smart cookie. If he doesn't know a word, he looks at the picture for clues to help him figure it out. He struggles with first and last letter reversal, particularly when it comes to small words like "in." He says, "ni." I'm suddenly reminded of Monty Python: "We are the knights who say NI!" Anyway, it's too early for me to ask for a dyslexia screening. Even though dyslexia is a real concern due to the trauma his brain has suffered, letter reversal is pretty common at this stage of a child learning to read.
School is keeping me pretty busy, but I've recently vowed not to let it consume my free time. Bram really needs more play time with me. I don't want his childhood memories to be of me grading papers and not having time to play with him. We now come home, have dinner, read Bram's book, and then play a board game. Anything else that needs to get done simply has to wait. We spent today playing basketball and then building castles out of Bram's foam blocks. It was a nice relaxing day at home. Tomorrow we're heading up to Braum's for some pumpkin ice cream. Yum!
Well, that's about it for now. I'll post again soon. I'm pretty sure I'm forgetting a humorous Bram anecdote I wanted to share, but I'll just post it later when it hits me. I'm pretty tired and my little man is already asleep.
Saturday, November 19, 2011
Saturday, October 29, 2011
A new blog for Bram
Well, I started a blog for Bram a while ago, but it was part of a website that I ended up not keeping. I thought I'd give it another go, but stick with a straight blog this time. I'll do my best to keep the blog updated. I've been giving updates through Facebook, but I've grown tired of Facebook and its voyeuristic nature. I just want a simple way to provide updates on Bram for those people who'd like to stay in the loop. So here you go.
Bram is now five-years-old and in kindergarten. He finished his chemotherapy about two and a half years ago so we're about half way to the magical five year mark. If Bram stays clear for another two and a half years, they'll knock his MRI's down to once a year. However, if he stays clear for just another year and a half (give or take a month), they'll declare him "in remission." For any new followers, Bram was diagnosed with Atypical Teratoid Rhabdoid Tumor when he was just 22 months old. AT/RT is a rare (only 30 a year are diagnosed) and very malignant (tends to recur and spread rapidly) brain tumor. Upon his diagnosis, Bram underwent brain surgery to remove the tumor (known as a tumor resection), six weeks of radiation to his brain, and about fourteen months of multi-modal chemotherapy. I'd have to count them up, but I believe he received around eight different chemotherapy drugs, some of them were delivered directly into his spine (intrathecal chemotherapy).
Bram spent about 75% of those fourteen months in the hospital due to infection. Through the support of my friends, family, and strangers, I was able to be with him in the hospital through it all. It was a long and arduous journey. On two separate occasions, Bram was admitted for sepsis. Both times I thought I might lose him. He also had to endure multiple surgeries to replace his chemotherapy port due to staph infections in the line. He is the strongest and bravest little boy I know. He has endured more than most adults.
Bram is also an amazing story of recovery. Although we do not know what the future holds for him, today Bram is a normal kindergartener. Both radiation and chemotherapy can have devastating consequences to a child's cognitive abilities. As of right now, Bram tests in the average range for intelligence. The major cognitive casualty seems to be processing speed; however, according to his teacher, Bram is doing better than a number of his classmates. He is in a regular kindergarten class and gets pulled out once a day for about twenty minutes to work with a special ed. teacher. The time he spends with that teacher was decreased at the end of last year from forty-five minutes. I don't expect Bram to be pulled out at all next year. Bram's real challenge has been recovering his fine motor skills and speech. His speech is constantly improving. 95% of what he says is clear and understandable. His writing is a bit of a challenge for him. Muscle weakness and fine motor coordination are to blame for his difficulties.
I can't emphasize enough how fortunate Bram has been in terms of side effects; however, I also have to acknowledge the reality that we are not out of the woods. Both the chemotherapy drugs and the radiation he received have the ability to cause side effects down the road. Cognitive abilities can degenerate long after the radiation was received. Radiation can also cause new cancer, stroke, and aneurysms. Some of the chemo drugs can cause leukemia and others he received can damage organs. Congestive heart failure is a major concern due to the doxorubicin he received.
Still, we have today and that is amazing. While the fear of relapse always looms, I am striving to focus on the enjoyment of each day. Right now, we are preparing for Halloween and looking forward to Thanksgiving and Christmas. Bram's next MRI is scheduled for January. I'll post again periodically and will definitely update you with Bram's MRI results when we get them. Thank you for following Bram's story as we "keep moving forward."
Bram is now five-years-old and in kindergarten. He finished his chemotherapy about two and a half years ago so we're about half way to the magical five year mark. If Bram stays clear for another two and a half years, they'll knock his MRI's down to once a year. However, if he stays clear for just another year and a half (give or take a month), they'll declare him "in remission." For any new followers, Bram was diagnosed with Atypical Teratoid Rhabdoid Tumor when he was just 22 months old. AT/RT is a rare (only 30 a year are diagnosed) and very malignant (tends to recur and spread rapidly) brain tumor. Upon his diagnosis, Bram underwent brain surgery to remove the tumor (known as a tumor resection), six weeks of radiation to his brain, and about fourteen months of multi-modal chemotherapy. I'd have to count them up, but I believe he received around eight different chemotherapy drugs, some of them were delivered directly into his spine (intrathecal chemotherapy).
Bram spent about 75% of those fourteen months in the hospital due to infection. Through the support of my friends, family, and strangers, I was able to be with him in the hospital through it all. It was a long and arduous journey. On two separate occasions, Bram was admitted for sepsis. Both times I thought I might lose him. He also had to endure multiple surgeries to replace his chemotherapy port due to staph infections in the line. He is the strongest and bravest little boy I know. He has endured more than most adults.
Bram is also an amazing story of recovery. Although we do not know what the future holds for him, today Bram is a normal kindergartener. Both radiation and chemotherapy can have devastating consequences to a child's cognitive abilities. As of right now, Bram tests in the average range for intelligence. The major cognitive casualty seems to be processing speed; however, according to his teacher, Bram is doing better than a number of his classmates. He is in a regular kindergarten class and gets pulled out once a day for about twenty minutes to work with a special ed. teacher. The time he spends with that teacher was decreased at the end of last year from forty-five minutes. I don't expect Bram to be pulled out at all next year. Bram's real challenge has been recovering his fine motor skills and speech. His speech is constantly improving. 95% of what he says is clear and understandable. His writing is a bit of a challenge for him. Muscle weakness and fine motor coordination are to blame for his difficulties.
I can't emphasize enough how fortunate Bram has been in terms of side effects; however, I also have to acknowledge the reality that we are not out of the woods. Both the chemotherapy drugs and the radiation he received have the ability to cause side effects down the road. Cognitive abilities can degenerate long after the radiation was received. Radiation can also cause new cancer, stroke, and aneurysms. Some of the chemo drugs can cause leukemia and others he received can damage organs. Congestive heart failure is a major concern due to the doxorubicin he received.
Still, we have today and that is amazing. While the fear of relapse always looms, I am striving to focus on the enjoyment of each day. Right now, we are preparing for Halloween and looking forward to Thanksgiving and Christmas. Bram's next MRI is scheduled for January. I'll post again periodically and will definitely update you with Bram's MRI results when we get them. Thank you for following Bram's story as we "keep moving forward."
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