tag:blogger.com,1999:blog-2757132068533226683.post1919428617469275610..comments2023-03-29T09:25:50.607-04:00Comments on Henry's Gift: Do you hear that?The Scheckshttp://www.blogger.com/profile/12523601434081898059noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2757132068533226683.post-39461873983231670132008-04-01T21:39:00.000-04:002008-04-01T21:39:00.000-04:00Wow! one more day of chemo!What a trooper your lit...Wow! one more day of chemo!<BR/>What a trooper your little guy is!<BR/>but then you know that!<BR/><BR/>we love you all!<BR/><BR/>Cousin Susan H.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2757132068533226683.post-11931286293208789122008-04-01T21:08:00.000-04:002008-04-01T21:08:00.000-04:00My son was diagnosed with supratentorial PNET in 2...My son was diagnosed with supratentorial PNET in 2003, and did the <A HREF="http://stjude.org/stjude/v/index.jsp?vgnextoid=034e722d99f70110VgnVCM1000001e0215acRCRD&vgnextchannel=4931bfe82e118010VgnVCM1000000e2015acRCRD" REL="nofollow">SJMB03</A> trial at St. Jude, which uses cisplatin instead of carboplatin.<BR/><BR/>Carboplatin is more sparing of the ears than cisplatin.<BR/><BR/>My son started out the treatment with a profound right-sided hearing loss, for all practical purposes he has never heard from that ear.<BR/><BR/>Almost all kids that lose hearing do so after the third cycle, it's almost like clockwork. I haven't read enough of your blog to know exactly how many cycles Henry has done, but if you're nearing the end it sounds like about the right timing.<BR/><BR/>Most kids don't lose significant hearing after that first drop. My son lost high-frequency hearing in both ears and he is managing without hearing aids. The only time we particularly notice the loss is in noisy environments with lots of people talking, or in the car with lots of wind noise and the like.<BR/><BR/>So don't despair. Going through this process is a period of mourning for the parents, we mourn the loss of what we consider an ideal childhood (luckily our kids don't have this concept), we mourn the loss of their hair, we mourn the loss of hearing. I felt like my son started out with all these hits against him before the brain tumor and to lose even more just wasn't fair.<BR/><BR/>But this September we will celebrate 5 years from diagnosis. If his August MRI's are still clear, we will "graduate" to annual visits.<BR/><BR/>I still worry, and I still mourn what was lost, but I also celebrate every day we spend with him.<BR/><BR/>I realize the road ahead is still murky, that is until you breathe your first breath of relief after Henry's blood counts recover this cycle.<BR/><BR/>But hopefully you're beginning to see the light at the end of the tunnel.<BR/><BR/>I wish Henry and your family well, and I'll check back periodically to see how he's doing.Kathyhttps://www.blogger.com/profile/14682272042615851184noreply@blogger.comtag:blogger.com,1999:blog-2757132068533226683.post-83553763556581100992008-04-01T18:08:00.000-04:002008-04-01T18:08:00.000-04:00I am sure "one day at a time" is easier said than ...I am sure "one day at a time" is easier said than done. Especially when each day can throw you a different curve ball.<BR/>As I was having "happy hour" this evening, my thoughts were centered on Henry and his family during these next weeks at JH. Wishing all of you peace during this last round of chemo and stem cell transplant.<BR/>My ex sis in law, Victoria, is pediatric audiologist in Philly. If you have some questions you want to run by her, let me know.<BR/><BR/>nkAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2757132068533226683.post-26672934530241398082008-04-01T09:37:00.000-04:002008-04-01T09:37:00.000-04:00I agree with "t". It is almost over, seems like a...I agree with "t". It is almost over, seems like an eternity, or a minute in time, or the way it has always been. <BR/><BR/>I remember October 13 so vividly and as plans were made, 6 months of chemo/treatment seemed like FOREVER. And now one day of chemo remains.<BR/><BR/>Tara and Bryan, Henry and Grandma Linda are the champs of organization, tolerance, cooperation, sacrifice and amazing courage.<BR/><BR/>HATS OFF TO YOU ALL! We love you and sing your praises and offer our admiration every day. No one could have done this better.<BR/><BR/>Henry's Challenge is certainly not over but we are all feeling the positive hope of Spring and healing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2757132068533226683.post-15729484838466346622008-04-01T08:13:00.000-04:002008-04-01T08:13:00.000-04:00After all this time, I still don't have the right ...After all this time, I still don't have the right words to tell you all how I feel. Just know that little H and your family have always been in my waking thoughts and prayers. All I can think of it that its almost over. That has to be a good thing. I can't wait to know he's home for the Spring and watering his flowers. Hang in there you 3.<BR/><BR/>tAnonymousnoreply@blogger.com