Thanks for the Kids My VP Looks Like Me T-Shirt. In regards to the spinal taps, I should clarify they do give him some medication before the procedure that “relaxes” him and we can push for full sedation but they really advise against it for our sons benefit. To be fully sedated, he has to fast which was absolutely terrible when he was taking Decadron two times a day (steroid treatment) and he just has a much much longer day at the hospital. He’s getting weekly spinal taps (he gets one form of chemo through his spinal cord as well). When he does the non-sedated taps, he’s out in a few hours and that includes accessing his port, IV chemo and spinal tap.
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I just lost my mom to lymphoma after caring for her for Kids My VP Looks Like Me T-Shirt. She lives on the other side of the country which meant a 4 hour time difference to adjust to. I had a ton of help from my wife and our extended family along with home care workers and a nurse that would visit regularly and still it was absolutely exhausting. So I feel your pain, although I cannot imagine how tough it would be to go through this watching your little one suffer.