It's amazing what a little rest and some home time will do. Henry has perked up considerably. His mood has returned to normal and he's beginning to eat and drink a bit more. Yesterday morning he played with his sister - she was his 'dolphin' in the bath tub - after about 45 minutes of independent playing he wandered out with his shoulders slumped forward. "Sophie weared me all out" He laid down on the couch and slept for another two hours.
Today is shaping up to be similar. He's up and dressed and feeling good. We'll try to get him out for a while and tempt his appetite this morning with a cinnamon roll from Panera. He's asking to play in the sprinkler since it's a hot day. We've promised him that since he can't go swimming this summer, he's allowed to mess with the hose whenever he wants to. I think he's likely to take us up on that.
Sunday, June 8, 2008
Friday, June 6, 2008
A Rough Beginning
Henry's radiation treatments began Wednesday. Despite having been sedated many times before without lasting effect and being told that the effects of radiation wouldn't be manifest until weeks into treatment, Henry has been an anxious, tired mess since this began, Wednesday afternoon.
The girls and I arrived to St. Casimir's about 5:30p on Wednesday only to have Henry vomit shortly after. We expected grogginess for a few hours, but not all day and certainly not this. He proceeded to have several more episodes of the same, increasing our anxiety that his tumor had returned. While rather unlikely, we spent last night in the Emergency Room at Johns Hopkins getting a CT scan of Henry's head. Fortunately the scan showed nothing of the sort to our great relief.
Henry finally slept well last night and woke up to attend his third treatment this morning in fairly decent spirits. We're home now and have a three day respite in which to observe his condition in the absence of sedation and radiation treatments. We get back at it on Tuesday due to a staffing glitch preventing our scheduled treatment Monday. We're hoping for a quiet, long and restful weekend.
The girls and I arrived to St. Casimir's about 5:30p on Wednesday only to have Henry vomit shortly after. We expected grogginess for a few hours, but not all day and certainly not this. He proceeded to have several more episodes of the same, increasing our anxiety that his tumor had returned. While rather unlikely, we spent last night in the Emergency Room at Johns Hopkins getting a CT scan of Henry's head. Fortunately the scan showed nothing of the sort to our great relief.
Henry finally slept well last night and woke up to attend his third treatment this morning in fairly decent spirits. We're home now and have a three day respite in which to observe his condition in the absence of sedation and radiation treatments. We get back at it on Tuesday due to a staffing glitch preventing our scheduled treatment Monday. We're hoping for a quiet, long and restful weekend.
Wednesday, June 4, 2008
Radiation: Day 1
Henry begins his radiation today. Tara took him down to St. Casimir's last evening as his treatments begin early. Early treatments are welcome because he cannot have anything to eat or drink due to the anesthesia he must receive daily. Henry will be receiving radiation to his entire spine and head. They will give boost doses to what is called the 'tumor bed' and to the suspicious spot on his spine. The treatments take less than twenty minutes or so.
We are increasingly settled about the decision and have turned our attention now toward managing him as well as our family through his treatment schedule. This seems to be the typical cycle; head up to consider the big picture, head down to get it done.
We are increasingly settled about the decision and have turned our attention now toward managing him as well as our family through his treatment schedule. This seems to be the typical cycle; head up to consider the big picture, head down to get it done.
Sunday, June 1, 2008
A Different Kind of Radiation
The solar variety. Courtesy of Uncle Frank, we enjoyed a fabulous weekend at Bethany Beach this weekend. Our hope was to get there before radiation, and also before the ocean water got warm enough to tempt Henry (since he still has a catheter in his chest he can't get wet). It was toe-curling cold, so the objective was met. However, we had a blast playing in the sand, the tidepools, and hitting the boardwalk.
At least one of these two is going to be giving her daddy an ulcer a few years from now. We are so not ready for teenagers.
Henry terrorized the boardwalk seagulls with his mogocycle. He felt responsible to clear it so all of the people could walk where they wanted.
One of our favorite anecdotes of the weekend also happened on the boardwalk. Henry and Bryan were going back to the car, and Bryan noticed that Henry was moving an inch at a time on his mogocycle, which normally runs pretty fast. Bryan asked him what was going on, and Henry whispered, motioning to the Bethany policeman standing close by, "I didn't want to get pulled over for going too fast." He was dead serious, too.
Unfortunately, all was not fun and games. Henry had some stomach issues this weekend, and is definitely losing weight again. He vomited once on Friday night, and I can't pretend that it didn't scare us to death. Headaches and vomiting bring back a lot of ugly memories. We had a reassuring phone call with the on-call oncologist, and plan to follow up with a call to our own oncologist tomorrow. Henry's energy level and appetite picked up a lot today, though we still didn't get in as many calories as we would have liked. Still, we're feeling better about him seeing how he looked today.
Wednesday, May 28, 2008
Neuropsych testing
Henry spent several hours today with a pediatric cognitive specialist for neuropsychiatric testing. They schedule kids for 6 hours, but he needed only 2 1/2! He took to the specialist very quickly, and completed his 'games' happily. We'll get the results back at our next visit with them, but we don't expect anything of significance. This was his baseline testing so that his cognitive progress can be monitored over the next several years.
After that we had a visit at the oncology clinic. He felt good today, and enjoyed teasing the clinician. His counts continue to get better and better, though we've been warned that radiation can impact them due to the temporary damage to the bone marrow in the spine. Still, he'll be starting out from a fairly strong point.
He won't have another clinic visit until next Wednesday after his first dose of radiation. We are planning on moving back into St. Casimir's (thank you, Believe in Tomorrow!) for the next several weeks. This will allow us a home base in Baltimore to avoid 4 hours in the car daily, but we'll still be able to spend weekends together at home as a family. When I told him today that we'll be going back to Casimir's next week he said, "Good, I like it there."
We feel more and more ready to face radiation. Of course, we anticipate some unpleasant short term side effects like nausea, vomiting, hair loss, and fatigue, but we hope that they will be mild and brief. Even more so, we are hopeful that this will be the end of the cancer and we won't have to do things to Henry to make him feel sick anymore.
After that we had a visit at the oncology clinic. He felt good today, and enjoyed teasing the clinician. His counts continue to get better and better, though we've been warned that radiation can impact them due to the temporary damage to the bone marrow in the spine. Still, he'll be starting out from a fairly strong point.
He won't have another clinic visit until next Wednesday after his first dose of radiation. We are planning on moving back into St. Casimir's (thank you, Believe in Tomorrow!) for the next several weeks. This will allow us a home base in Baltimore to avoid 4 hours in the car daily, but we'll still be able to spend weekends together at home as a family. When I told him today that we'll be going back to Casimir's next week he said, "Good, I like it there."
We feel more and more ready to face radiation. Of course, we anticipate some unpleasant short term side effects like nausea, vomiting, hair loss, and fatigue, but we hope that they will be mild and brief. Even more so, we are hopeful that this will be the end of the cancer and we won't have to do things to Henry to make him feel sick anymore.
Tuesday, May 27, 2008
National Childhood Cancer Awareness Day
CureSearch is pleased to let you know that on May 22 the US Senate passed S. Res 563, the "National Childhood Cancer Awareness Day Resolution". This Resolution was introduced by Senator Wayne Allard of CO and Senator Hillary Rodham Clinton of NY and passed by unanimous consent of the Senate. We are grateful to the two Senators for their recognition of the need to eliminate childhood cancer. Below is the announcement from Senator Allard's office.
Senate Passes Allard-Clinton
‘National Childhood Cancer Awareness Day' Resolution
Washington, D.C. - September 13, 2008 will now be recognized as "National Childhood Cancer Awareness Day" as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).
"Never before in history has the dream of eliminating childhood cancer been so attainable, yet seemed so elusive," said Senator Allard. "We live in a nation where the effectiveness of treatments and technology offer hope to children who dream of a bright future. Each case of childhood cancer is a very personal tragedy that can strike any family with children, at anytime, anywhere. In setting aside September 13th to recognize this battle on cancer, we continue of our efforts to draw attention to the victims of childhood cancer and the great work of the families and organizations who continue the fight."
"We have made tremendous strides in the fight against childhood cancer, but far too many children still suffer and lose their lives to this illness. The more we know as a nation the better able we will be to prevent and treat the disease and help those who are battling and surviving pediatric cancers. National Childhood Cancer Awareness Day is an opportunity to reach out to all Americans with the facts about childhood cancer, and this day will be an important symbol of our commitment on all days to find a cure," said Senator Clinton.
Childhood cancer is the number one disease killer and the second overall leading cause of death of children in the United States. More than 10,000 children under the age of 15 in the United States are diagnosed with cancer annually.
Tuesday, May 20, 2008
Sign Here
I sign a lot of things pretty mindlessly. After all there are just so many of them. Credit card receipts probably top the list. I click quickly through the pages of online acceptance forms for new software, hitting 'I Agree' without much concern for what I've consented to. Recently the discharge papers for Henry's clinic visits have become that way too. We've been to so many of them and nothing, thankfully, has changed of late so we get the same instructions each time. Call for a fever, take these medications, here's the oncologist's on-call number (which by the way, I put into my phone the very first time), schedule an appointment out front, sign here.
Today was a bit different. There were general instructions regarding Henry's radiation, but page two ran down the list of side effects.
Usually effects like this were not of the 'common' variety, but fell under the 'rare' list. While chemotherapy was tough, we've managed to avoid many of the more compounding effects. Radiation was threatening to be different, harsher.
So Henry is sitting on my lap, the radiation oncologist has handed me the clipboard with the consent form. This is usually where my eyes automatically scan for the line to sign, but I delayed. While I know that the alternative to doing this is risky too, my signature on this line was the point at which Henry was going to be made different. The therapy couldn't proceed without this signature. I held the pen and pretended to read the paper again. I felt his weight in my lap, his energy. "I can't wait to eat daddy," he said for the twelfth time in 5 minutes.
I signed it of course. But there was an awful lot of careful thought into that signature, even beyond those seconds turned minutes holding the pen, and my son's future, in my hand.
Today was a bit different. There were general instructions regarding Henry's radiation, but page two ran down the list of side effects.
- Hair loss
- Reduced or absent growth hormone production
- Reduced or absent pituitary hormones requiring life-long medication
- Impaired backbone growth
- Reduced school performance and possible need for special schooling
Common
Usually effects like this were not of the 'common' variety, but fell under the 'rare' list. While chemotherapy was tough, we've managed to avoid many of the more compounding effects. Radiation was threatening to be different, harsher.
So Henry is sitting on my lap, the radiation oncologist has handed me the clipboard with the consent form. This is usually where my eyes automatically scan for the line to sign, but I delayed. While I know that the alternative to doing this is risky too, my signature on this line was the point at which Henry was going to be made different. The therapy couldn't proceed without this signature. I held the pen and pretended to read the paper again. I felt his weight in my lap, his energy. "I can't wait to eat daddy," he said for the twelfth time in 5 minutes.
I signed it of course. But there was an awful lot of careful thought into that signature, even beyond those seconds turned minutes holding the pen, and my son's future, in my hand.
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