One of my friends posted on facebook yesterday, that it was 2 years ago that her daughter got her stem cells back – “Day Zero” in Transplant speak. A lot of our friends in the hospital had big things happen this week! Cole had his debulking surgery. It went well, they were able to remove a lot of the tumor. He spent a few days in ICU, then the regular floor, then he went home. Kerri Anne also had a big surgery – they had to take one of her kidneys. She also was able to go home within a week.
On November 18th, our friends lost their son Durey. He was the first of our “circle” to die. He was just over 1 year old. He had a brain tumor that was discovered at I think 4 months or so. He came in to the hospital about the same time we did. He only made it home for a couple of days for his birthday. I cried so hard when I found out. I sensed that something was wrong, because I saw his own family gathered in the ICU waiting room. I didn’t go in, or inquire more, because we were having our own rough day.
Alexander had his major surgery that day as well. They were able to remove a large amount of the tumor. We were very hopeful that day. I remember it well. After we left Alexander, we brought some treats to the OR staff, and to the Post Op Staff. The Post Op staff knew him well. We knew he wouldn’t be going there after this surgery (he would go right to the ICU) so we wanted to bring them a little something to thank them for always taking such good care of him. They said they would check up on him even though they wouldn’t have him this time.
We were waiting on the 7th floor in the parent area (we had a patient room, but had to leave it because they needed it for another child and Alexander would be going to the ICU). My mom was there with Richard and I for most of the day. Different friends whose children were in the hospital that day sat and talked with us. Several of the doctors, even those NOT on the Oncology rotation that day, came and talked to us. A couple of the Medical Students had told us they were going to try to get into observe the surgery. Everyone loved Alexander so much!!!!While he was in surgery, I went and met my friend for Coffee. We had just gotten the call that they had officially “started” the surgery. About 10 minutes later there was a “code red” (fire!) called in the Operating Room area!! I didn’t even flinch – my friend was shocked by that. When I talked to Richard about it later he said “well, I figured he didn’t spontaneously combust, or they would have called us”. It was some much needed comic relief for us!
In the early afternoon Richard and I went to our Parent Support Group. While we were there, the surgeon called to say they were just about done! He came out and talked to us for a bit. It was a while before we were able to see Alexander however. We did finally get to go into the ICU (well, I pushed myself in – I was tired of waiting they were taking just too darn long!) He was hooked up to a respirator and a lot of IV’s. I was not as upset by the respirator as I thought I would be. It was during this time that we got to meet the wonderful Respiratory Therapist team – we had not dealt with them before. They were wonderful, talking to us about their role, and explaining the machine (which Alexander would spend 13 days on) . It was a very rough ride. At one point Alexander had a temperature of 106! We never did figure out what it was from, it was very scary for a while for us. He spent a total of 19 days in the ICU, and 45 days in the hospital during that admission. He had 2 additional surgery’s, and MRI, a GI Scope, MIBG Scan. During the month of December he had 4 blood transfusions and 12 platelet transfusions. At one point there was a shortage of platelets. Richard e-mailed the news stations. One of them picked up our story, and Alexander became a “Star”. http://boston.cbslocal.com/2010/12/20/baby-in-need-of-platelet-donations/
He was there for Thanksgiving and Christmas. It was a very difficult time for all of us. Even though it was 2 years ago, all the emotions of that time still are very fresh in my mind. I still cry thinking about Durey dieing. I still remember the fear that we had when Alexander was so sick, and we wondered if we were going to lose him then. It may be 2 years, but it still seems like yesterday