Wes update: Tomorrow makes one week since his surgery. It is also - TopicsExpress



          

Wes update: Tomorrow makes one week since his surgery. It is also Thanksgiving. I will not be focusing on the food as I will be reflecting on my blessings. The hospital gave everyone small tables with table clothes and will have Thanksgiving dinner, but I feel really guilty eating and celebrating over food in front of Wes when he hasnt been able to eat or even sip water in a week. Tomorrow will also be daddys last day here with us in NY. He will be flying back to VA to be with our 3yr old and 20 month old. Wes is upset, but there is not an easy way to handle this situation. I hate that I am apart from my other children and that I missed Ebins first Thanksgiving feast at preschool. At this time I am not sure when we will be reunited. Wes worked so hard this morning and was able to walk two full laps around the floor while only holding my hand. He did so well. He is now on IV morphine as needed and the epidural has been removed. The NG tube is still draining but has decreased by about 25%. I hope it will soon be out. The team talked about Wes in depth yesterday and today I heard the options. I have to say the decision will not be easy because none of these choices guarantee anything. Dr Modak said our options are high dose chemo, back to humanized 3f8 followed by vaccine, low dose maintenance chemo, or the DFMO trial in Michigan. He said he does not recommend high chemo because last time he did not benefit from it and it was rough. He said since relapse is so new, the vaccine would not take effect for a few months and he would need treatment ahead of it. They are leaning toward 2-4 cycles of humanized 3f8 again, but I am concerned since he just relapsed on it, if it will happen again before he gets to the vaccine. This is still an option because his relapse was in one area. Dr Modak said for some it works but for others it doesnt. I have also known kids to relapse on the DFMO trial. It is really hard to make these choices for your child when you were thrown into the medical field without prior knowledge or warning. He said we will go over it again once he has recovered from surgery.
Posted on: Wed, 26 Nov 2014 23:46:48 +0000

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