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Life as a Rollercoaster

So, what's been happening, you ask? Here's the update in a large-ish nutshell:

Tuesday 8/26: Scheduled lumbar puncture (read: spinal tap) required test before transplant. The puncture went fine, but then Gary's low-grade fever he'd been battling on Monday ramped up along with the excruitiating bone pain that we can always associate with a relapse in the leukemia. Since Gary's bone marrow biopsy from 8/19 had come back clear (almost free of disease) the docs at Hopkins were not convinced in the least that his leukemia had come back that quickly. They sent Gary home looped-up on pain killers and throwing up. Thankfully once he got home the nausea subsided and the pain eased up considerably and we had a quiet night's rest. MANY thanks to our true-blue pal Jim Rafferty who drew the short straw that day and took Gary to Hopkins for the lumbar puncture. It turned into quite a hectic day for all of us.

Wednesday 8/27: We took the kids up to the Castro farm in the morning and Gary, Jim and I went back to Hopkins for follow-up blood work. Dropped Jim off at the train station to get him back to DC. The kids spent the night at my Mom's.

Thursday 8/28: 7:00am call for Dr. Smith to say that Gary's blood culture came back postivie for a bacterial infection. This was relayed as good news from the docs, as this, to them, explained Gary's fever and bone pain. We remained highly skeptical. (our family motto is : Trust No One) Gary and I went back to Hopkins to start him on antibiotics to combact the infection and also to sign the consent forms for the transplant. Gary also had his Radiation simulation performed to get the math and physics ready for his Total Body Radiation treatment this Thursday (9/4). The simulation was a snap and bascially involved a physicist and a tape measure. In the true Gary spirit, he was disappointed that none of the equipment got fired up and no actual radiation was unleased.

Friday 8/29: Hung out with our children. Ditched our children to various grandparents and went to dinner with some friends. (Pazza Luna in Locust Point. Very Yummy)

Saturay 8/30: Began chemo regimine to prepare Gary for transplant at 7:30am. One of the drugs he is getting requires that he is infused with large amounts of fluid over the course of the day. Gary was doing great until about 4:00 when his jaw and teeth began to ache and then his joints became very painful. The nurse said it was probably from the fluid (Gary gained 5 pounds that day). Unfortunately, this pain quickly lead into the bone pain and high fever that Gary has been battling on and off. They gave him a lot of pain killers, which promtly made him sick and he was admitted into the hospital for the night. I got home at midnight.

Sunday 8/31: Gary had a pain free night once he got settled in and the pain and nausea medicines did their jobs. He got the same chemo regimine that he had gotten the day before, so we were all on pins and needles to see if the late day pain would come back. It did not, but the nausea kept him awake throughout the night. He spent the night the Hopkins so he could get some help. I collected my orphaned children from my mother's and went home to bed.

Monday 9/1: Libby is 10 months old and is sprouting two teeth. Gary is continuing to battle nausea but he is home now after we spent the day at the hospital. He is currently upstairs sound asleep and I hope he wake up feeling better. The kids are asleep and the house is quiet.

We go back on Tuesday and Wednesday for more chemo and Thursday for the radiation treatment. The transplant is on Friday. We have to go back to Hopkins everyday afterward for about 60 days for drugs and blood work. We are just about to approach the starting line. The finish line is five years down the road when Gary is cancer free. Check your mailboxes at that time for the party invitation of the century.

Sorry we haven't updated everyone in a while, but things have been a whirlwind around here. Gary is putting together a "Transplant 101" document and we should get that up shortly to educate everyone on the transplant process.

Love to all and to all a good night...


Posted by: Marcy on Sep 01, 03 | 7:59 pm | Profile


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