thank you to all who continue to give us strength, comments, food, gifts and love.
Ed Clark, Christmas Guest
7 years ago
Monday, July 16, 2007
Back on the Inside
we're back in the hospital as of 3 am this morning because of a fever. toby is feeling pretty miserable, as are we. this will be his second course of high-impact antibiotics in a week. his weight is down again, so we may start TPN (nutrition via IV) tomorrow. his white blood cell counts are still at zero, so no discharge in the near future. i thought i would post some photos, in an attempt to lift our spirits.
thank you to all who continue to give us strength, comments, food, gifts and love.
thank you to all who continue to give us strength, comments, food, gifts and love.
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8 comments:
Does Toby know the term "crome dome"? the pics are as inspiring as you all are... i dunno nuttin' from being a girl but I do know that although moms are the tree of life... dads are the grounding factor. Live free little man.
Love Cousin Tracy mmmmmmmwwwwwwaaaa
My beautifully bald spouse says God only makes a few perfect heads and the rest He covers with hair - so obviously you have a couple of perfect heads in your family! So sorry about the downturn in Toby's physical condtion - TPN is a challenge at first but can give the nutrition that is needed so his body will stabilize. What a struggle - what a beautiful family. Our prayers continue for you to experience peace and healing.
Dear Mooki, I just spent a day in Haifa with Yochi, of course we talked about you and looked at photos, and I heard about Yoni's flight over NYC.
I send birthday wishes to Yoni and love to you all.
Thilde
What great pictures!!! i have always had a thing for bald heads as my daddy was bald headed and it also is a mark of intelligence to me. sounds like Toby is very very smart. i know i have learned alot from him. you can tell how well read you all are too . i love to read myself, although its nora roberts romance novels right now... my daddy always encouraged us to read even if it was comic books. remember them? i guess video games have taken the place of comics. i'm showing my age now!! toby, i'm almost 49 but feel like i am 49 going on 12 !!!! just to let you know someone in florida loves you and thinks of you often!! nettie knotts my nickname used to be nerf - but that was even before nerf balls!!! hahaha. God Bless You All
beautiful pictures! a bright moment looking at them as I checked in (as I do every morning and every evening) to see how Toby is doing....just hoping and praying for bright, smiling, happy, loving news to match the pictures. thinking of you all and holding you close to my heart.
I'm just reading "You Don't Have To Die", one family's guide to surviving childhood cancer, about a 6 year old with life-threatening Burkitt's lymphoma. In one incident, they pasted spiked hair on his head for a Hallowe'en costume party. The judge said that anyone who shaved his head to be a skin head deserved Ist prize! The book has many interesting ideas about the effects of the illness on other family members, going back to school, etc. Published in 1992, it gives phone #'s and addresses instead of websites for resources, but most of the information is current. Tests and procedures are described in great detail, in lay terms. Medications, some of which were experimental at the time, are standard protocol now. Probably everyone could get something out of it- especially since Jason was a 14 yr.old teenager at the time of writing.
It gives us hope! Love, Aunt Blanche
Rita Anberg, RN, a friend, wrote to Blanche: "What a touching blog site. Such a beautiful child and so much anguish and frustration for those who know and love him, and for those of us whose lives have been touched because of caring people like you. Will hold Toby and family in my heart.
Dear Stephen and Mooki, Friends and strangers have written such eloquent words of encouragement to you and they touch all of us. Tonight I read what Shoshana, someone who has never met you, said in the personal comments. I thought of Toby in his pre-surgery days when we walked a few blocks in your neighborhood to purchase Italian Ice. Do I remember correctly that Toby chose Mango? We each relished our treats with gusto. Toby will be doing this again and again, even perhaps with his maternal grandparents when they visit in August. Grandfather Bernie is looking forward to joining us in the future. He remembers Italian Ice from his days as a child in Utica, NY and he wants to savor the experience with Toby.
Love, Grandmother Merci
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