an unexpected village

Three months ago yesterday was the day our lives changed forever. I remember the night we came to this hospital. I came in with Caemon on the ambulance, and when we got off of the elevator and turned a corner, I saw a sign reading “Children’s Oncology and Bone Marrow Transplant Unit.” I froze. This wasn’t for us. Even as we made our way to our room, met the on-call oncology fellow, and began to process that our son did, indeed, have leukemia, I couldn’t claim this place or these people. I didn’t know them, and in my terrified mind, they couldn’t possibly know my son if they thought he had cancer.

If I could give myself–that scared mom who couldn’t stop shaking–a bit of comfort, I would say, Look around at the doctors and nurses. Take a good look. These people are going to fall in love with your son.

I imagine at the time that would have provided little comfort. I didn’t want a place like this to be familiar, to know what it was like to live in a children’s hospital or for my son to know hospital life or cancer life at all. In those early stages of learning a child has a life-threatening illness, all one wants to do is flee. Knowing now, though, what a special community we have here, I am actually grateful to be here. Of course I would give anything for my boy to be healthy, but if he has to be sick, I’m glad he’s sick here.

Before Caemon was diagnosed with leukemia, he lived in a fairly small world. He had just embarked on preschool, and we were so looking forward to the opportunity for external help in raising our boy. We had the help of Grandma and Grandpa when they were able to come to us or us to them, but as parents, we were learning we needed to broaden Caemon’s exposure, to find ourselves that proverbial village to help us raise our son. I don’t think we ever imagined we would find it in a hospital, and certainly not under these circumstances, but as the months have unfolded, we find ourselves every day surrounded by people who are not only taking care of our son’s medical needs, but are nurturing him and shaping him as well. It is remarkable to watch.

Just yesterday, his child life specialist came in to spend time with him. She chatted with Caemon, tickled him a bit, got him to think about eating, and as she looked at him, I thought, She loves him. The day prior, when the social worker came to check in with us, she and Caemon immediately began repeating a favorite line from one of his Dr. Seuss books, and they made crazy banging sounds as they did it. They were completely absorbed in their funny antics, this private joke the two of them share, and then they sat down to read a book together as though I wasn’t there. Again I thought, She loves him. And my boy loves these people right back. Knowing this, knowing that other people see what a special boy he is is good salve to a mom whose heart breaks every day knowing what her child is enduring. In the hands of these people, I cannot say he is suffering. In fact, I can say that in many ways, because of their love, he is thriving. 

Daily, the providers who tend to Caemon’s needs take their care so much beyond vitals and medications, and procedures. They bring their hearts here, and when they leave, they take these kids with them. We received a message this week from one of Caemon’s favorite nurses while she was traveling with her family in Ireland because she was thinking of our boy. A patient care assistant brought in Christmas lights after Caemon told her he was afraid of the shadows at night. Another nurse stepped in to help us redefine some boundaries with Caemon’s excitement for medical supplies and in the process taught him how to give back to others. They teach him to be kind to his moms, to be polite, to make decisions, to navigate disappointments. They help him through rough moments, and they celebrate every little victory, from taking his first pill to making it through a scary procedure. And through all of this, Caemon has gained role models: nurturing, gentle, funny, brilliant souls–both male and female–who are the only types of superheroes Caemon knows.

It is hard to believe a place like this can start to feel like home, that the people can feel like family. Three months ago, I never would have imagined that Caemon’s oncologist, one of the leading experts in the world on Caemon’s illness, would be bringing him chocolates from England and working with him on potty training or talking politics with us. I never imagined nurses would come in, even after their shifts were over, to hang out with my boy, or that they would compete to be the one who takes care of him. But this is what we experience here on a daily basis from everyone who works here, from the patient care assistants who take time to make crafts or read with Caemon, to the nurses who involve him in every aspect of his care, to the doctors who have so much pride when they see him taking such interest in medicine. It really is no wonder he wants to emulate these people and do what they do. These people are made of special stuff–the sort of ingredients that make angels and fairy godmothers and Mary Poppins and Albert Einstein who they are. They are equal parts brilliant and compassionate, creative and  competent, and somehow, amid all of this bad luck, we get these people to help us raise our son.

Today, we’re missing celebrating Thanksgiving with our family, and while it is hard that we won’t be seeing Caemon run around with his cousins, or that we won’t be sitting in the warmth of the people who know us and love us best, we are not without family here. Here, behind that Children’s Oncology sign, there is a whole lot of love, and for that we are very, very fortunate.

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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.