Although cold outside, there was some warmth in the Scheck household today. We began the day early with Henry up at 5am. Yesterday he really seemed uncomfortable. All day long the parental concern was on high alert and took its toll. I suspected today would be similar but again we were surprised.
Henry's comfort level today was improved. He rested well, taking a two hour nap around 1pm. Grandma Linda and Grandma Jane kept the girls busy today with crafts and activities which contributed to some quiet around the house. He didn't moan with discomfort as much today either although he still clearly had some rough times. He's got a rash around his mid-section that seems to be very irritating to him as he continually scratches. Lotion seems to ease this a bit along with an antihistamine we've begun giving him. He still complains, although not quite as frequently, about his stomach. We're not sure if this is nausea, constipation, or other side-effects of chemotherapy. We've spread out his doses of nausea medications which hasn't seemed to effect his comfort level so we'll probably continue to reduce or spread them out as we go. I feel like the body will do its best to correct itself but will have difficulty when there are so many other things going on. Getting him off some of these medicines, as long as it doesn't affect his comfort, should hopefully help.
Tara found some encouraging information on the internet regarding a recent study for high-risk medulloblastoma that suggested some increased survival rates. Nothing to pin our hopes to necessarily, but encouraging nonetheless.
Tomorrow my mother and I take Henry back to the hospital for a clinic visit as Tara returns to work for the first time since this all began. Henry is currently in the midst of the nadir of his white blood cell counts. Days 10 to 14 are to be the worst according to the oncologist. So far our hand washing and household cleaning regimens have seemed sufficient, although as the season progresses, Tara and I are preparing ourselves for at least one or two unplanned trips to the hospital.
My anxiety for tomorrow is mostly about the ride in the car. Henry's not keen on wearing that darn mask and the motivation of leaving the hospital is definitely not the same as returning. They've told us that its possible that if his counts are lower than expected, then he may need platelets or blood transfusions - apparently the blood transfusions take some time and may require another trip the following day due to our late appointment time tomorrow. And so it goes, another day of withholding expectation and just riding with the tide of what comes. We're learning day by day that to hope for one thing or another will only serve to create another expectation to lose. As fast as this is all coming at us, I'm finding it easier to live in the moment and accept what is.
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6 comments:
Dear Scheck family:
You are in the thoughts and prayers of so many people that you don't even know. I have a three year old boy the same age as Henry and we pray for your family each night. Keep the faith and know that you, Henry, and your family are an inspiration to us every day.
Living for the moment is really all we can do. It's getting lost in the important moments that really matter most. Hang in there! We're praying for you everyday.
Shanda
Bryan and Tara - It was so nice to visit with the Schecks yesterday. And to see Henry peacefully napping through most of my visit was a gift. The family tableau of quiet talking and sharing, Sophie and Anna making an Advent calender with their grandmother Jane and Bryan's mother, Linda, a gentle, quiet eye watching over all - ready to do whatever is needed. I walked in expecting to help and left having been helped by the serenity and comfort of family, despite the sick little boy sleeping in his little bed. Or maybe it was because of Henry's magic presence that I felt that way. Or was it Anna and Sophie's showing such amazing kindness to everyone. Or maybe it was the grandmothers standing at ready for any need. Or maybe it was because of your incredible strength and positive energy during this time of unknowing and worry. Or maybe it is just because I am blessed to share time with this lovely family.
Lots of d-bugged e-hugs, M.
Tara and Bryan,
I look for the latest info on Henry everyday! I love that little guy and he is constantly in my thoughts! We pray for miracles and I feel Henry will be one!!
Love,
Susan Herren
I don't personally know your family but I feel a connection to you thru your site. We have a mutual friend who told me about Henry and his battle. I have admired your strength and Henry's resilience and have revisited my own values because of your families challenge. Please know that in addition to the support of your family and friends, you have the support of strangers, a second circle, if you will, who hope for the very best for Henry. This second circle surrounds the first and makes it stronger. We are here with you, Tara, Henry and the girls. We don't know you, but we sure do love you! Thank you for sharing your thoughts, feelings and hopes. It is therapy for all of us. My prayers are with you.
K Barron
WOW, is all I can say when I read your blog. And then super WOW, when I read the outpouring of love and concern from families and strangers. As unfortunate as it is, I believe everyone has been blessed because of Henry's Challenge.
It breaks my heart to hear of all his struggles. Several times a day I pray for him, you, Tara and the girls. I hope as you read this he is sleeping soundly or perhaps coloring a picture or flashing that beautiful smile like he did for me when he was racing his cruckie with my car!
Thanks for keeping everyone up to date. Bryan, your are just amazing.
love
t
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