No Such Thing as a Routine Visit

Greg and I went up to St. Louis for the day yesterday. The sole purpose was to have a consult with Radiation Oncology that he needs prior to the transplant. They couldn't fit it in while we were there last week inpatient. Figures.

Let me preface by saying that Matthew's preschool graduation was at 6 p.m. Greg's appointment was at 12:30. All we needed to do was get on the road by 2 (2:30 at the latest) to make it.

Well, seems there's a rule around here that you can't go anywhere (I think even the cafeteria and the bathroom) without them taking your vital signs. Even though this was just a consult for the radiation they're giving him next week. So, of course, Greg had a fever. It was 101.5. Greg said that was impossible & made the nurse take it again 10 minutes later. It was 101.9. He decided he wanted to go with the first one.

So, we did our consult, and they called Vij's office. Vij only keeps clinic hours on Tuesdays & Fridays, so he was out. They told him to go to the lab at the Cancer Center to draw blood cultures & then go to Vij's office to see George, the nurse practitioner. We got to the lab at 2. The meeting with George was a trip (he's a little strange), but the bottom line is, by the time we got there, his temp was 100.7. Then, like a minute later it was 99.6. He feels really crappy, but that's become the norm the last few weeks.

Altho George was a little strange, he is now my hero. He did NOT admit Greg to the hospital. He needed plateletes (he was at 5!) and whole blood. They got the plateteles into him and one dose of IV antibiotics. Then George sent him home with 2 new oral antibiotics, plus an oral drug to prevent bleeding. I forgot to mention that Greg has sores & blood blisters all over the inside of his mouth. A total of 2 doctors, 4 nurses & 1 nurse practitioner looked at them & each one said they'd NEVER seen any that bad. He can't eat anything. Yesterday he consumed a grand total of 2 bottles of cranberry juice, water and about a quarter cup of cottage cheese (which, by the way, costs about $2.50 from the salad bar at the cafeteria). He's at the clinic here today getting red blood, plus whatever else he will need. He continued to run a low-grade fever on & off all the way home. It was really interesting riding home with the heat on, Greg wrapped in a blanket & his seat warmer set to "high." I think I lost 10 pounds. But, the explanation for this fever is probably a "neutropenic fever" rather than the infections he's been getting since November. His white count is so low, his body is compensating for it. He went all night alternating between shivering and sweating. Oh, and all the antibiotics have really affected his GI tract in a negative way, if you catch my drift......

We got home very late. Eric, super wonderful big brother that he is, picked Matthew up from school, took him to Steak & Shake for dinner, had the foresight to buy a disposable camera from Walgreen's (my camera was in my trunk in St. Louis!), went to graduation, and basically salvaged the day for his baby brother. I don't know what I'd do without him! Matthew was very disappointed that we missed it, but handled it better than I did. I think I've managed to raise a couple of very outstanding kids.

Grandma, Uncle Tom, Aunt Tammy, Aunt Skibby & Uncle Don also sent Matthew a bouquet of cookies for graduation & that was waiting for him when they got home. Perfect timing. Thanks so much to all of you.

The interesting news of the day relates to the TBI (Total Body Irradiation) he will be getting as part of the transplant. Sounds awful, but actually, that, in combination with high dose chemo, is actually LESS toxic that chemo alone. We were very surprised to hear that. The purpose is to kill off the cancer cells in all the little nooks & crannies that the chemo can't reach (I'm sure there's a better scientific explanation, but that's the gist of it). There are some side effects, like a pneumonia-like condition, and liver & kidney problems, but they are usually very treatable. The biggest problem is that in 3 to 5 years he will very likely develp cataracts. He'll take that. He would gladly be around in 5 years to have cataract surgery.

As far as timing goes, we will receive a phone call next week sometime (probably late in the week) or over the weekend, saying that everything's ready & to come on up. We won't get much warning. Grandma Sadie & Auntie Skibby are coming the 21st to stay with the kids. I'm not exactly sure what the plan is, but Skibby has worked things out, & I'm just flying by the seat of my pants.

So, that's all the news for now. Actually, just writing this made me feel better. The blog is very therapeutic.

Keep the prayers coming. We really need them!

Love,

Greg & Ann