Three B’s

BACK

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.

BIOPSY

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.

BONE MARROW

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.

Our boy gazing at the fire he helped me build the morning before we came back.

up and up

When undergoing chemotherapy, there is the time during which blood counts come all the way down–practically to zero–then the waiting period for the counts to come back up. We have been in that waiting period, and now, Caemon’s counts are beginning to rise. He has not needed a platelet transfusion, or any other blood product, for over a week now. His platelets are rising on their own and are over 70,000 now. His white blood cells continue to rise as well, and those neutrophils are slowly creeping up.

We have been told that once his neutrophils are up to 200-300 (they’re 50 today), we’ll get to go home for a few days. We’re beginning to believe this, and while he may still throw us a surprise with an infection or other unexpected turn, we’re really looking forward to it. For now, we continue to wait for his counts to rise, try to keep his spirits up, and continue talking about all the things he loves about home to prepare him. He is enjoying stories about the trash truck, about baking muffins, feeding the cats, and sleeping in his own bed. It all sounds positively beautiful to me. We’re keeping our fingers crossed that it really happens.

Once we return from home (we will only be there a short time), Caemon will get a Broviac catheter. This is a type of central line that will go into his chest and into one of the veins near his heart. It will provide a more permanent site for blood draws and for IV fluids and medications, and it’s less likely to be a source for infection. Currently Caemon has two PICC lines–an IV on each of his upper arms–which are cause for quite a bit of annoyance, so while this is a bit of a big, scary step, it is also something that is going to cause him so much more comfort and freedom with his arms. He will also have another bone marrow biopsy when we return to determine where his disease is and how many more rounds of chemo he will need before transplant.

So far, his weight has started to rise as well. He lost a bit since I last wrote, but it’s up again, and he has been eating well. His diet consists of a good deal of butter, olive oil, and cream/sour cream and vehicles for these ingredients, including nachos, baked potatoes, pasta, oatmeal, and anything else we can entice him to eat. We have also discovered some very high calorie shakes the kitchen will send up. He sips on these throughout the day. I cringe at how few fruits and veggies he eats, but honestly, our primary focus is to make every bite he eats as highly caloric as possible. Lucky boy! We’ll get back to better nutrition after the worst of this is over. For now, we need to fatten the boy up because the transplant process will most certainly result in some weight loss.

It seems that as Caemon’s counts are rising, his spirits are lifted as well. He is enjoying literally hours of his medical play. He has perfected the procedures of heparin-locking an IV, saline flushing an IV, and more. All the little pieces of these tubes that fit together are endlessly entertaining to him, much as legos and erector sets might be, so when I start to worry he isn’t playing, I have to remember that he’s got quite a sophisticated set of toys in his medical supplies, and I needn’t worry. He is learning so much: he’s gotten his numbers down now by helping to program his IV meds, he is working on vocabulary (and will have no trouble if he opts for medical school or pharmacological studies), broadening his social skills, and exercising a whole lot of patience for a child his age. We miss having him in preschool, but we are fully aware each day that children his age will learn anywhere, and because of his endless curiosity, Caemon is regularly schooling himself, making all who enter his room his teachers. I’m oddly proud to hear my child pronounce drug names like “Cephapim” and “Allopurinol.” There is something equally charming and very sad about it all.

The tone around here is largely positive these days, though. His primary oncologist has been paying him visits this week, and she is more happy than we have seen her before with his new progress. Yesterday, she showed Jodi and I a photo of a little boy who has survived JMML. He is three years out and doing beautifully. He looked a bit like Caemon. It was such a good reminder that there is another side to all of this, and while we still have Everest to climb with the next rounds of chemo, the “conditioning” chemotherapy, the transplant, and the recovery, we’ve already started the ascent. The path ahead is steep and scary, but we’re getting there and have so much to look forward to.

One foot in front of the other, they say. One foot in front of the other. We’ll get there.