Colin enjoyed two nights at home, playing with toys and relaxing in the Target House. It was exhausting (but satisfying) for Mom and Dad, who took shifts to stay up and take care of him through the night. The boys loved being together, and it was important to remind them both that our family is meant to be together.
One impetus for leaving on Friday, even in the absence of private duty nursing over the weekend (we had made arrangements for a new agency, but one of the nurses whom we met and who would be part of Colin’s team resigned in the meantime and they had to regroup), was to allow Colin to enjoy a taste of freedom before his counts dropped and a neutropenic fever sent him back to the hospital.
On Friday night, we enjoyed a family photo session that Target sponsors every year for families who are staying there. There are some terrific pictures of the family and both of the boys. Although it was fun and the boys got to pose with props, we constantly had to wipe Colin’s mouth of bloody saliva from a cut he had gotten prior to discharge.
As time wore on, we realized that he was still actively bleeding six hours later, necessitating a call to the Medicine Room. We spoke with the fellow on call, who said that we could try tamping the wound or come in for Colin to receive platelets. His platelet count had been on the low side and probably dropping. Although they would not necessarily transfuse platelets at that level under normal circumstances, based on clinical symptoms they respond differently.
Given the location in his mouth, on the inside gums (the side next to the tongue), it would have been impossible to reasonably stuff a gauze in there as an alternative. Thus, we decided to cart him back to the Medicine Room.
Colin’s buddy Jerry took us in while Dad and Aidan settled in at home. It was an unsurprising but in auspicious start to the weekend. In the Medicine Room, we realized that Mom had stupidly cut off Colin’s blood band, thinking that it had expired; St. Jude has a policy of checking blood types and matching antibodies periodically and then placing an I.D. band on the patient.
Repeating the type and match would take an hour, and then we would end up spending much of the evening in a treatment room on the second floor, since the Medicine Room closes at 11 pm. At this point, the bleeding seemed to have stopped, so we came home with plans of returning in the morning. Colin’s ANC was 800 and clearly on its way dooooown.
The morning trip to the Medicine Room was necessary anyway, since we had to go back for Colin’s final chemo for the second round. Before getting platelets, Colin had a push of vincristine. The visit was not too onerous and we were able to return to Target House in short order and before the end of Aidan’s day at circus camp.
Aidan’s school sponsored circus camp with the Salida circus in Colorado. Although he was terrified about the prospect of doing trapeze, which we reassured him would not happen, he is a natural tumbler/tripper. He came back from camp on Friday and Saturday with his painted in a cute starburst of paint, not the more traditional and garrish hobo clown type of look.
We relaxed in the Amy Grant room and Mom took a much needed nap. Sunday morning was going to start off with another trip to the Medicine Room to get lab work done on Colin and, presumably, get a transfusion of packed red blood cells. With a hemoglobin level of 8.7 on Saturday, we assumed that he would drop below 8.0 on Sunday, and Dr. DeWire wanted to make sure that Colin was up for rehab on Monday.
We hopped on the shuttle before 8 am on Sunday with the hopes of returning by lunchtime, but one delay fed into another. Eventually, Aidan and Dad bopped into the Medicine Room as we settled into a treatment room (rather than the waiting room area where people sit en masse to get quick infusions) for Colin’s transfusion.
This was Colin’s fifth or sixth serving of packed red blood cells, so it seemed old hat. At the very end, however, we noticed that he had large red welts on his face and body. Finally, a dreaded adverse reaction! They gave Colin some Benadryl and then attenuated our visit by running another type and match before giving him another dose of platelets (his platelets had dropped even further, despite the previous day’s transfusion; his ANC now stood at zero).
They also ran some tests on the infusion and his blood but found nothing outstanding. At the end of the platelet transfusion, we were getting ready to vamoose when the nurse noticed a welt on Colin’s face: another adverse reaction! It is possible that an allergic response was masked by the first Benadryl shot.
Again ready to go, Mom and Aidan went to pick up a new prescription for Colin at the pharmacy but immediately turned around when Dad stuck his head into the hall and shouted, “Colin has a fever!”
We immediately turned around knowing that Colin would have to take a trip upstairs and spend at least the next few nights as an inpatient. He was pretty upset about the whole thing, especially as he started to feel better after they gave him some Tylenol and the fever resolved.
However, there is nothing else to be done and we eventually settled into the room across from the one we had moved out of on Friday. For us, this was far from a defeat; this is how oncology has adapted its practices to save children’s lives. Quick prophylactic response to potential infections in a population that has no ability to fight disease is imperative to preserving their health through therapy.
We are happy for Colin to go through this process and exit public life since it means that he is safer for it. While they strongly sense that his fever was caused by the blood products, they can’t be sure. Illness in neutropenic children can progress very quickly, and there is no sense in taking chances.
Colin will be able to leave the hospital as long as he remains free of a fever and his counts begin to rise, though the tolerance on that is variable. In his case, based on his tendency to have weird complications, we surmise that they will want clear and incontrovertible evidence that he is on the upswing.
Although of course we had hoped that Colin would spend more time out of the hospital, we had also anticipated that he would end up boomeranging at some point due to a neutropenic fever. We just hadn’t predicted that it would follow an agonizing day in the Med Room. With 12 more chemo-free days before Round 3 resumes, he has ample opportunity to enjoy his trip into the wild.