I'll always remember Thanksgiving week as the time we figured out that Seth had cancer. Or as the nurse practitioner at the Pedi told me, "It's a 99% chance it's a tumor or cancer." Having a holiday at home where no one was in the hospital was also strange.
Two years ago Seth started limping the Friday before Thanksgiving week. I had big plans. I was going to spend lots of time with Nathaniel because Seth had been taking up so much of my time (since he wasn't feeling good). Tuesday we were going to the zoo with Ginny and Maren. Will was taking the week off. We called the hemoc emergency line twice that weekend about Seth's limping. They said they emergency rooms were really full. We could try and wait for an x-ray or they could try and schedule us an appointment with our pedi on Monday for an x-ray. We decided to wait and see our Doctor.
I remember trying to get Seth to eat oatmeal that Monday morning. He wouldn't. We'd been giving him Tylenol all weekend and that would help for several hours and he could get down a play for a bit. Then he would start feeling bad again. I remember Joel and Nathaniel playing. I drank my coffee from a mug while I held Seth.
The pedi waiting room was nuts. Seth just laid on me. The Disney Channel was on, some show "Sofia the First." We waited for over an hour. Finally we got called back and saw the nurse practitioner, Amy. I'd seen her several times with Seth lately with his eat infections.
Amy thought he had a virus and that can cause fluid buildup on the hip. We did x-rays there but Seth screamed bloody murder as I held him on his back on the hard table. We finally got it done.
We went back to the room and the door was open. I heard bits and pieces of Amy talking to someone on the phone. I heard her say "oh no." I got the feeling something was wrong. She came in and said she was on the phone with Dr. Swisschuck, the head of radiology for UTMB. He saw some lesions in Seth's bone and was 99% sure it was a tumor or cancer. I just couldn't believe it. I called Will and put him on speaker so she could explain it to him. She said we could either go to the hospital in Galveston and be admitted to have a bunch of tests done immediately or go home and schedule the tests for several days. She thought we should just be admitted so we would know and I agreed.
I drove to Galveston in a fog, Seth falling asleep in the car seat. I called my mom. Once I got there I had to find a spot in the parking garage and carry Seth in. He was upset.I got through the admissions process in the ER. The ladies weren't very helpful. We went to an ER room. Will showed up (Ginny had taken the kids). The male nurse was pretty nice. But he had to wrap Seth in a sheet to get the IV in. It was terrible. I never ate lunch. After several hours we did some full body x-rays. We finally went to a room in the Children's hospital. It had a crib with bars that Seth was supposed to sleep in. No way. I held him in the chair and we slept there 2 nights with his IV.
Dr. Hooda wasn't there but we saw the other hemo Dr. They were able to get bone marrow biopsy and MRIs scheduled for the next morning. That day was terrible. A lot of waiting for hours and hours. When Seth woke up he couldn't breathe. Just I was back there with him. I stayed calm and the nurses helped. It was horrifying. We learned later that they had used too large of a tube to intubate him with during anesthesia. Then Seth threw up all over me. This is late at night, after dinner. No one could tell from the images what kind of cancer this was. The biopsies didn't show cancer in his bone marrow. They told us late that Tuesday night that we would have to transfer to Texas Children's for a bone biopsy and diagnosis.
We went back to our room that night and Seth and I tried to sleep in a chair. I think my mom had flown in that day. In the middle of the night the resident (a young male) woke me up and said Seth's platelets were 7k. He wanted to do IVIG in the middle of the night. I was so panicked. But he called the hemoc Dr. and she said "no." The next morning she explained sometimes there is a drop in the platelets after the procedure. His platelets did go up a bit by morning.
Will showed up Wednesday morning. We were slated to travel to TCH by ambulance. The day before a holiday is apparently super-busy. We waited all day. Mary Kay drove my mom, Nathaniel and Joel up. But Seth just cried as I help him. I don't think anyone had a good visit. Right as Seth fell asleep around 8:00 that night, the ambulance drivers showed up and we had to wake him up for the ambulance ride. Only I could go. We'd had some additional stress earlier that day. Right after Mary Kay left for home with everyone, the social worker asked us if we had the car seat for the ambulance ride. We did not. Matthias had to pick one up from our house and drive it to Galveston.
We didn't get to TCH until 10 that night. We had to go in through ER and then I had to carry Seth a long ways to our room in Abercrombie. It was tiny but at least had a bed. I answered questions from different residents until 11. We tried to get a little sleep. They told me now biopsies could happen the next day because it was Thanksgivng.
Will came up Thanksgiving morning. Some friends brought Thanksgiving to our house. Dr. Rowe came to visit and Karl from our church. I think we consulted with an orthopedic Dr. about the biopsy (one of the spots they were trying for was in Seth's shin).
Friday morning Seth was NPO and of course he wanted to eat and drink for the first time. We kept waiting all day. He had to get platelets before the surgery. We waited on that. I didn't eat lunch. Finally around 4:00 I asked the nurse if the surgery was even happening. She said it was. That it might be after 5. I ran downstairs to the McDonald's to get a Big Mac and fries and eat it here. Apparently Seth screamed for Will while I was gone, but my cell reception wasn't good downstairs and I missed his calls asking me to come back.
I don't think the surgery started until after 6. I don't think they were done until after 8. Then they had to call the Dr. back because Seth's shin looked very swollen. Finally at 9 or 10:00 pm they moved us to a new room on 9th floor West Tower. Our new home. Our first nurse that night was Mary. I can't believe all that happened on Black Friday.
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| I made it to the Thanksgiving feast at his school - our 3rd year in a row together! |
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| Per tradition, he also eats my piece of pumpkin pie every year (as well as my own) |
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| Putting together Seth's new tricycle |
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| Nov 22 - Joel's cremation |
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| We had fun making turkey crafts that Aunt Hill sent |
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| Nathaniel and I played Phase 10 and baked some cookies for the nurses/patients at the hospital |
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| Nathaniel wanted to decorate the tree, which was fun, even though we didn't feel like it |
