the joy in sorting

This week has found us signing a new rental agreement and beginning to pack up our home. We are renters for the time being, and when we moved into our current home, we moved here for Caemon. The three bedrooms, the nice little yard, the space for running around all were draws for a family with a little boy to raise. With Caemon’s death, however, we find it so impossible to be here. We keep the door to his bedroom closed at all times and only briefly step in to deposit something and then close the door.

We see him everywhere here: the dining room which houses his little play kitchen as well as our big family table where he liked to sit on a bench, the living room where he enjoyed helping to make fires in our stove or sit with me in the rocking chair reading books, the back yard where he would dig and plant and catch garter snakes and make mud pies, the kitchen where he would pull up his stool to help us make coffee or muffins or hummus and where he fell in love with all our appliances, even our garage where he liked to get into my tools or hang out with the vacuum cleaner. This place is loaded with Caemon memories, and it’s hard to leave them behind, but in order to move forward, Jodi and I need to be in a space where we don’t expect to see Caemon running toward us when we walk through the door or stumbling down the hall when he awakes in the night. We need a bit of a blank slate.

Of course, moving also pushes us into perhaps the most dreaded of activities after losing a child: the sorting of his things. Because we had put in new flooring in anticipation of Caemon’s homecoming, Caemon’s room never really came back together. His bed is not there, and there are just piles of his toys and clothes and books stacked, including all the boxes of generously donated items meant to make his year in isolation more enriching. His clothing has been in large sealed ziplock bags, which we had to use when transporting his clothing from the laundry to his room in BMT to keep dust and germs out. It has been a mess that neither of us has felt we could endure, but we knew we would have to tackle it soon, and likely with the help of many friends holding our hands through each step in the tear-soaked process.

Then came yesterday. Jodi was having a conversation with one of Caemon’s favorite nurses online. She is volunteering at an orphanage in Tanzania, and they were discussing her experience. Within minutes, Jodi was telling me that the baby home needed boys’ clothes. After a few more moments passed, we were discussing how we would get the clothes there, and within half an hour, Jodi had opened the door to Caemon’s room, pulled out a suitcase, and we were sitting on his floor, sorting through his clothes, packing them up to send to these kids who need them so much.

It all felt so right. Caemon loved it when the red suitcases came out. He loved packing for adventures, putting his clothes in the luggage, and getting ready to go. He was always “packed” long before Jodi and I, although usually this meant he had packed his whole shirt drawer, an air pump, a stack of books, and a few pairs of my socks. He would have loved the idea of packing his things to go on an adventure, and so this is the spirit with which we approached what we thought would be the most unbearable task.

Caemon packing for a mini adventure.

Naturally, there were items we wanted to keep, items we wanted to give to people we know, but having a purpose for Caemon’s clothes and knowing we would soon see photos of beautiful children wearing them, that they would be worn and worn and worn just felt so good. Knowing that Jodi and I–two moms without a child–were sending clothes to kids who don’t have parents felt positively right.

There are still plenty of his things to sort through. Some of them we’ll sell at a moving sale in a couple of weeks, others we will hold for future children or gifts for kids we know, and certainly plenty of the new toys we will donate to the sorts of groups who donated them to us. His books we’ll keep–every last one of them because if you know what bibliophiles we are, you know that parting with a well-established library is virtually impossible. But it’s happening. The sorting, the distributing, the lightening of our burden is happening just as it should.

I’m surprised that so far this hasn’t been an impossible task, that there is, in fact, some joy to be found in discovering Caemon’s treasures all over again. Yesterday, we found his stash of flashlights from the hospital, teddy bears that were covered in bandaids and various types of medical tape, even a couple of packets of “soothing Cavilon.” We rediscovered his “fellas”–the funny group of stuffed animals with which he used to have tea parties. We found artwork of Caemon’s, the music he so loved, and his beloved guitar. Discovering each of these helped me find some joy through the tears. It helped me remember my son for precisely the wondrous child he was, and in that, I discovered a little bit of healing. We are by no means finished, but I am finding myself looking forward to spending more time in Caemon’s room seeing the little details of my quirky Caemon, sending more bits of his life out on adventures, and cherishing the many sweet memories of my beautiful boy.

I know that there are going to be some more difficult moments, but cleaning up a child’s room is the work of motherhood. We fold clothes, place toys in their right places, and put books on shelves. We pack up the clothes that don’t fit anymore and sort through the toys, and when I look at this work through this lens, it is all so very natural: returning to these simple, almost automatic tasks, I’m allowed to remember a piece of myself I have been mourning as well, and that is such a gift.

inching forward

Yesterday, Jodi and I had a meeting with one of the doctors from the Bone Marrow Transplant (BMT) unit. It was a length, two-hour meeting involving details about all of the medications Caemon will be receiving, including the chemotherapy regimen, as well as any of the complications that can arise from these medications. Some of the complications are immediate, while others are more long-term, but needless to say, it was all a bit overwhelming. In many ways, however, there was a greater sense of relief in knowing what we can expect and knowing that this team has a plan for absolutely every turn of events. They have plans and backup plans, and they know what they do so very well that they are able to avoid many of the complications that were commonplace not long ago. All of this is reassuring given the risky nature of the BMT process.

We learned, too, that the twenty-four-year-old woman is definitely going forward as the donor. She is somewhere in the United States (although it is not uncommon to have international donors), so on the day they harvest her marrow (probably the day before Caemon’s transplant), a courier will fly with the marrow, and bring it to us. I can’t help thinking about what this young woman must be feeling about this, but I hope one day we can meet her and thank her for the most precious gift anyone could give us: saving our son’s life.

Tomorrow, Caemon will go in for another bone marrow biopsy and another test of his spinal fluid. The poor boy will have to go without food the entire day tomorrow, as they have scheduled him for a 4:00 surgery. We have a little lie we tell Caemon on days like this, as it seems the hospital occasionally just runs out of food. We don’t know why it happens or why they are suddenly able to replenish their supplies after Caemon visits the “warm room” (his term for the operating room), but no-food days often result in frequent “calls” to the kitchen to inquire whether the hospital chefs have returned from the grocery store. How long our little ruse will continue to work, I do not know, but at least his parents and care providers don’t have to be the bad guys who keep him from eating.

After tomorrow’s adventures, if his counts come up more, we may have the opportunity to go home for the weekend. There was some talk yesterday that we might try to push his BMT admission back a week, but it appears that the oncologist and the BMT doctors have come to a consensus that next week is still the week. Whether we come in Monday or another day is yet to be determined, but for now, we are sticking to the rough schedule that was laid out for us.

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.