Over a week has passed since I last wrote an update. Time in the hospital follows a very different chronology than the rest of the world. Days and weeks blend together. Weekends come and go without much of any awareness, other than that Caemon has his weekend meds, and there are fewer people needing to check in on him.
Since I last wrote, Caemon has finished his chemotherapy. He is five days out from his last dose, and his counts have fallen as expected. Today, his neutrophils are at zero, which is called “nadir.” Now we wait for the counts to begin to recover. We are hoping for a chance to go home before transplant. It may just be a couple of days, but any sort of reset will be nice. Caemon handled this round of chemo very well. He had a few fevers, but nothing long-term, and he had a bit of a rash from one of the drugs, but that too was manageable. It has been overwhelmingly clear what a difference it makes for him to undergo these treatments with less disease in his body. The fact that it seems to continue to work is heartening.
At this point, our biggest goals are to keep Caemon free of infection and to keep his spirits up. Our nurses are doing a wonderful job of making sure he has a certain number of hours each day when he is free of his IV pole. He looks forward to being hep-locked for his trips to private neutropenic play time in the hospital’s playroom. This playtime offers such great reprieve from the tiny hospital room, and it lets him branch out and explore a bit more, especially without an awkward IV pole attached to him. While initially he only wanted to play with medical supplies there, he now has branched out to playing with cars, crafting with glue and other fun supplies, and even painting.
He also enjoys a daily visit to a patio near the playroom–sort of a rooftop deck in the middle of a couple of wings of the hospital. It’s nice that he can see the sky, breathe a little fresh air, and remember what it feels like simply to be outdoors. He never stays for long, but I know he finds it refreshing.
We all particularly enjoy having Caemon free of his tubes because it increases snuggle time, and our boy is very fond of this. Often in the evening, before he has to be hooked back up, we’ll curl up in the big chair together. These are sweet moments that feel just a little more normal than hospital bed cuddles. So much of what we do here is driven by our desire to make him comfortable, to provide him with a sense of normalcy, and for the most part, I think we have achieved a sense of home here in the hospital–as much of a sense of home as we’re all comfortable with anyway.
Right now, though, we’re missing a very important part of that home equation, and that is Jodi. She has come down with a cold, and she has to stay away until she is no longer symptomatic. We all feel a little out of sorts without one of our little trio here, and although time does have a way of slipping by here in the hospital, my hunch is this is going to be a very long week.
I will write more when time allows. Meanwhile, take a look at that smile. He’s still dreamy, bald head and all.
We have returned to the hospital. In fact, we needed to come back a day early because after Caemon’s blood draw on Halloween, the hospital called us to say his platelets were dipping too low for surgery, and they needed him to come in for a transfusion. We took him trick-or-treating (at exactly two houses in our neighborhood, and in the pouring rain), and then made our way back. Caemon charmed everyone in the hospital in his very official nurse’s uniform and was invited to work in various departments. He nearly followed a woman into the ER, ready to help.
The fact that Caemon was able to walk back in was lovely, but better than this was that he didn’t have to wear a mask! Along with learning that his platelets had dipped a bit, we also learned he was no longer neutropenic. Being able to walk through the hospital doors and into his own room a free, normal boy did a lot for him, for all of us, I think. It didn’t hurt matters that one of Caemon’s favorite nurses (we call her the Caemon Whisperer) left a treasure hunt for medical supplies all around our new room. He was delighted.
It was hard to leave home, and especially hard to want to be in this environment again, away from all of our comforts, and it was rough coming back a night early, leaving things in more disarray than we had planned, but it was what had to happen to keep our boy safe. As we drove over the Golden Gate, Jodi and I shifted into hospital mode, ready to take the next steps toward reclaiming our son.
Yesterday was a big day, as Caemon had surgery to place a central line (Broviac, for those interested) and to receive another bone marrow biopsy and lumbar puncture (spinal tap) with an injection of chemo to his spinal fluid. We waited and waited for surgery hour to draw near, and as is typical hospital fashion, his surgery time came and went without any word of when he would be transported. Meanwhile, we had to spin a number of lies to help Caemon cope with not being able to eat or drink for hours on end, the most effective of which was that the hospital was out of food and water. It’s amazing how well this works for him, and he just busies himself with something else until he thinks to ask again. He is so good-natured about this, and it’s honestly a little amusing to hear a tone of incredulity coming from a three-year-old. How does a hospital just run out of food anyway?!
The time finally came for the surgery, only an hour and a half after it was originally scheduled, and we headed down. We met all the usual players, the anethesiologist, the attending oncologist, the nurses from the OR and pre-op, and we got him ready. He was so brave once we were there, busy asking questions about the “warm room” (the operating room) and what sort of medical supplies people might have available to give to him. I donned the bunny suit (one day, I’m sure Jodi will snap a photo) and accompanied him in until he was asleep. Then, Jodi and I left to use our nervous energy to finish moving back into the room.
Caemon recovered well from his surgery, and after some ice cream, chocolate, pizza, and pain medication, he was feeling pretty good, and really, who wouldn’t with a diet like that? Jodi and I were trying to prepare ourselves all day for what might come, as we knew the preliminary biopsy results would be back later in the day. We knew that his platelets were lower, and we knew his oncologist was expecting to see that he needed more chemo, that his disease was still pretty active. When she finally came by in the evening, she said she was a little surprised and a little confused by his results because they showed some unexpected improvements, improvements to his platelet quality, his red blood cell quality, and overall less disease. It was hard to read her because I think this brilliant woman was genuinely surprised, but we took these tidbits of good-ish news. She wanted to get the official results today before making any official plans about his next round of chemo (she thought we might need to try something stronger), so we waited again hoping the official results didn’t show something the preliminary results missed.
All day today, we have waited to hear the flow cytometry results on the bone marrow biopsy. These are the official results that could help determine the next round of treatment. Finally, just an hour or so ago, the doctor came by to tell us what she had learned from the official reading of the bone marrow. Her exact words were, “His bone marrow actually looks really good! I’m really happy with it.” You may recall that the last time we spoke with our oncologist on a bone marrow biopsy day, she had us in a conference room and had tears in her eyes. This time, she pulled us out into the hallway (because Caemon was sleeping), and with a smile on her face, she read us the email report showing that Caemon’s bone marrow is showing only 3% of the blasts that were in such abundance (over 20%) in the last biopsy. She is confident that his bone marrow is recovering well and that the disease is responding just as it should to the chemotherapy regimen they have used. Jodi and I aren’t accustomed to hearing good news, but this was definitely news of the good variety and certainly something that gives us a good dose of hope.
Today Caemon starts his next round of chemotherapy. We have taken advantage of his freedom today, taking him to the playroom, dancing around the room with him, letting him walk the halls a bit. None of us is looking forward to the rough days that chemo brings, the fevers and rashes and other side effects, but knowing that it is working and that this next round may get him healthy enough for transplant is a huge relief.
Transplant is, after all, our next step. We have not spoken with any of our bone marrow doctors in a couple of weeks, but we learned from our oncologist that Caemon is scheduled to be admitted for transplant in early December. While they don’t have one specific donor pinned down, apparently they are examining several donors, who are already excellent matches to determine which is perfect. This level of precision is certainly welcome, and the knowledge that we have ample donors from which to choose is so heartening, given the number of blows we have had since his diagnosis just a couple of months ago.
We are on our path, as hard a road as it may be, and we are learning that our boy has a lot of fight in him. He is so strong, so brave, so precious.