seed day and beyond

On the first side of transplant–the days leading up to the big day, we talk about days in negatives (“Day -9”), but now that we are post transplant, each day is numbered as a positive.

Today is Day +2.

Both today and yesterday, we have gone back and forth between talking about Caemon as a caterpillar newly wrapped in his cocoon and a hibernating bear cub. The bear cub comparison may be coming as a result of the continuous loop of Berenstain Bears videos now playing in his room. He finds their stories very comforting, a little funny, and a good escape from how miserable he feels. It is fairly charming to hear him quoting Mama Bear with her slightly antiquated speech, and given that the theme of the video is looking at the bright side of situations, it all seems fairly appropriate, even if it is driving Jodi and I out of our minds a bit.

Caemon is experiencing a fair amount of discomfort. Yesterday, he slept most of the day and was really just a whisper of his normal, impish self. He had a fever last night (and the night before), so he has been placed on more antibiotics. Today, he has had more belly pain from the mucositis and is beginning to develop some mouth pain. I have never experienced something quite so awful as hearing my child cry in the sort of pain that requires morphine. We know this will pass within a couple of weeks, and that they are finding the right balance of medication, but it is so hard to endure for all of us. These are the dark days though. We’re keeping close to Caemon, making sure he has all the comforts he needs, whether that be stories read, music played, videos looped, or simply a lot of snuggles from his moms. The last of these is, of course, the most comforting to us all.

But I want to talk about transplant day before I forget it. Much like a birth, there is so much to remember, so many moments and feelings that can easily get swept away, and I know so many people want to walk through this with us. Here is what I can recall, followed by a slideshow from Day Zero, which I am now affectionately calling “Seed Day.”

Transplant day itself was such a sacred time. Throughout the day, we received calls and texts and messages here and on Facebook reminding us of the support we had. One of our favorite nurses came in on her day off to be with us during the transplant. My brother and our friend Carol came too to lend support to all of us. We all gathered around as 11:00 approached, and Caemon got himself ready. As I mentioned before, he was fully aware of the important nature of the day, and he was excited to get his “seeds.”

When the marrow arrived, it came in a large ice chest of sorts, and it was accompanied by a machine meant to thaw it. These were in the hall outside of Caemon’s room, and I spent a little time photographing the process, standing in the presence of these cells, marveling at how beautiful the color was and how powerful these bags of what appeared to be blood must be.

We had one of our favorite nurses for the day, a woman whom Caemon (all of us, really) has adored since we met her back in September. She has rarely been our nurse, but she has always come to visit Caemon, showing him funny games on her phone, bringing him books, and just generally making him laugh. To know she would be with us was so comforting, and as the process began, we were equally reassured by her intelligence and extreme competence as a nurse.

We played music and lit our flameless candles when the cells were brought in. Two of the BMT doctors came in as the cells were confirmed, the rate of the drip calculated, and the first bag was hung. We had been warned of the unpleasant odor coming from the preservative the cells are in, so throughout the room we placed cotton balls soaked in peppermint oil from the hospital and lavender oil from Carol. As the drip began, the odor was quite powerful, especially as we sat with Caemon on his bed. He didn’t seem to notice and was cheerful and enjoying the company of everyone around. We all enjoyed our time together as first one bag of marrow and then another made their way into Caemon’s body.

Because there can be somewhat of an allergic reaction to the marrow, as there can be with any blood product, Caemon had a few different medications (an antihistamine  Tylenol, a steroid) in advance of receiving the marrow to prevent these reactions, but he was fine, except for the pain surfacing from his mucositis. His nurse took his vital signs every few minutes throughout the transfusion, and he tolerated everything so well. This was a relief to all.

An hour or so after everything was over, Caemon was sitting happy in his bed. He reached over, grabbed the nurse call button, and pressed it. I asked him what he was doing, and he told me, “I want to tell the nurses that my seeds are finished.” He did call, and when the charge nurse answered, he told her that his seeds were done. She was appropriately enthusiastic.

Because he had had an eventful day, and because he was also receiving morphine fairly regularly, the boy was quite tired, so he had a lengthy nap following the transplant. As he fell asleep, more guests came, including Caemon’s oncologist, who shared with us that the percentage of Caemon’s specific type of genetic mutation (which led to his leukemia) has gone from 48% to 1%. This was lovely news to hear, for this showed us his disease responds to chemotherapy and that such a small amount remained that it should have been obliterated by this conditioning for the transplant. While we still have a long way to go toward full recovery, this was promising news to hear on this day.

Our next special guests were Grandma and Grandpa, who came and gave Caemon a special transplant gift from the whole family, and while he didn’t feel well, he enjoyed the time with his grandparents. We all did. Being surrounded by so many special people made the day really feel celebratory. And while we were reminded by a few people throughout the morning that transplant day can be anticlimactic, I can say it was anything but. The friends and family who gathered with us to honor the sacredness of the day, the event itself–it was everything it should have been and more. Everyone who entered the room that day felt it. Healing is beginning now. It will take some time for the new marrow to take hold–a lot of hibernating and extra caution–but we are on a path to a healthy child–a well-rested little bear cub, a beautiful butterfly.

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day zero: a solstice eve gift

The day has come. Then sun is rising over beautiful San Francisco. I am watching out the window as I wait for Jodi to arrive. Caemon is sleeping. He had a rough night with many wake-ups. He wanted me to hold him, to dance with him, to sleep next to him. He still has the remnants of steroids coursing through his body, making sleep fleeting. Now he sleeps under a dose of morphine, as he awoke with excruciating adominal pain. It is possible that mucousitis is starting to appear, that he will begin to have pain from his mouth to his bottom. This is an expected and difficult side effect of all of his conditioning chemotherapies, but managing the pain helps.

However, when the pain is gone, our boy is in good spirits. “Today is a special day for me,” he said upon waking a few moments ago. He understands that today is a big day, that he is getting a special kind of blood today. I described the bone marrow as seeds being planted in his body. For the last two springs, Caemon has helped us plant seeds for vegetables and flowers. He knows they grow into wonderous things, and he knows that these seeds will take his leukemia away.

We have been told that transplant day is often anti-climactic, that because the marrow is administered through his IV just like any other blood product, that it takes a short amount of time, that the day is really pretty quiet. While there may not be a big surgery or trip to a different room, this day is certainly not anti-climactic. It is the day our sweet boy gets a new chance at a healthy body, and that is cause for celebration.

That this is happening on the eve of the Winter Solstice makes it that much more special because as Caemon’s new marrow is introduced, we will be seeing the darkest day of the year. As it begins to take hold, while we still may feel shrouded in darkness, the days will each become a little bit lighter, a little easier to bear. Jodi and I have long celebrated the Solstice. It is a very special day to us, so to have this gift today, on the eve of the Solstice, is something so magical. The timing couldn’t be more ripe with possibility for our son, for our family. We’re ready to plant these seeds, ready to welcome the light, ready to reclaim our boy from this horrible disease. What a beautiful spring we will see this year.

I will post an update tonight or tomorrow morning to provide details about the transplant. In the meantime, we invite everyone to burn their candles, light their Christmas/Solstice/Yule trees, even take a walk outside and think of all the potential sitting just beneath the earth, waiting to spring forth as the light returns. When you do this, you bring that same light, that potential for new life to Caemon.

wishing on eyelashes

Image courtesy of In Her Image Photography

People have always admired Caemon’s eyelashes. They are impossibly long and full and frame his beautiful eyes so perfectly. A few days ago, when we were discussing just whether or not he would lose his lashes and brows this time with one of the nurses, she described his lashes as “spindly.” I was a little surprised, and then I looked and noticed that they have, in fact, become rather sparse. There was no need to question. The lashes were already falling out.

Today, when Caemon awoke from his nap, I saw four or five lashes scattered over his face. As he laid there rubbing his eyes, off came a few more. Jodi and I took turns picking them up and blowing them off of our hands as we wished what mothers wish when their children are stuck in hospital beds.

We are wrapping up Day -3. For a couple of days now, Caemon has been receiving new chemotherapy drugs along with something called ATG (thymoglobulin). It is a substance that acts as an immunosuppressant, which will keep Caemon’s body from rejecting the donor marrow. As you can imagine, it is quite rough on the body; it is also highly likely to cause allergic reactions. Caemon has to be premedicated with antihistimines, steroids, and Tylenol to minimize these reactions, but just in case, just outside his door is an emergency stash of things like epinephrine, extra hydrocortisone, more Benadryl. Seeing these any time we enter or exit his room reminds us just how precariously we are living now. At the same time, we know these nurses and doctors have got this under control.

Our poor boy has been on a couple of different steroids for the past two days, and they make life so hard for him, causing him to be crabby and disagreeable for the majority of the day.Even so, he has managed to seem mostly himself until today. Today he awoke wanting to do little more than watch videos, and this was true most of the day. We pulled out various toys, but he felt lousy and wanted the comfort of the same five Berenstain Bears episodes over and over again. As much as Jodi and I used to limit his screen time, we are finding it helpful here to let him escape his reality a little and get through the harder days with more ease.

The day culminated in Caemon feeling worse and worse and finally spiking a fever. Although the fever has gone down on its own, and the ATG commonly causes kids to spike fevers, the standard protocol here is to draw blood cultures to make sure there are no infections lurking, and then they’ll start an antibiotic as well. We have been down this road before, so while it is upsetting to see our son feeling so awful, we also know this is one of the rites of passage on his way to wellness. This process is supposed to have its complications. The body is supposed to dislike losing its immune system and healthy functioning cells. This doesn’t take all the worry away, but it can be reassuring to know that Caemon’s body is responding as it should.

Caemon’s transplant is Thursday. It is hard to believe just how quickly this day has come, and we find ourselves feeling both hopeful and nervous about it. This is already a rough road, and we know it only gets harder from here. Still, we have plenty of distractions to keep us from sitting in too much anxiety. Today it was a visit from Santa and making eyelash wishes. Given that this is the season for miracles, we will welcome them any way we can.

Our first Santa sighting through Caemon’s window.

We were even able to open the door and have a moment with Santa.

waiting out the weather

I find myself using a lot of mountain-climbing metaphors when I talk about Caemon’s illness. I haven’t ever climbed a mountain, but the mental and physical demands, the hazards and potential for mishaps, and of course the glorious summit and descent (during which there is ample danger as well) seem to fit. As we have reached the end of Caemon’s chemotherapy and are headed toward his bone marrow transplant, I keep imagining us at base camp. We’re getting oriented, making plans, studying our maps and checking our supplies. We are all ready to go up the mountain.

But this weekend, a blizzard has come through, and it’s just not safe to climb.

Tomorrow, Caemon was scheduled to enter the Bone Marrow Transplant Unit. Unfortunately, on Thursday night, he spiked a fever. Another came on Friday night, and yet another on Saturday night. The BMT doctors don’t want Caemon starting the transplant regimen until he is fever-free for 48-72 hours. He can only be admitted on a Sunday or Monday because certain tests must be sent away on certain days to certain labs, and any other schedule would make this impossible. Therefore, we learned today that our move to BMT won’t be delayed by just a few days. It will be a full week, perhaps two if Caemon doesn’t stop having fevers.

Our boy’s body is telling us he is just not ready for this yet. Some sort of infection has entered his system. Many of his blood counts are on the decline again, particularly his neutrophils (those white blood cells that make up the body’s defense against infection). At this point, we want to see cell recovery, not decline, and decline of most of these is indicative of fever and infection.

The past couple of days have been spent trying to figure out what that infection might be because the fevers are his only semi-consistant symptom (and even those only show up once a day). He has had blood cultures taken, plenty of physical exams, and then today, he had both an eye exam and a CT scan. The last of these is an attempt to smoke out any fungal infections that may be hiding inside Caemon’s body, particularly his organs like his lungs or liver or spleen. So many of these procedures are no small matter. The CT scan, for instance, required general anesthesia and recovery in the ICU (the first because he would never have been able to lie still for twenty minutes in a terrifying room with a tunnel, and the second because he has to recover in isolation due to his immunocompromised state). Through it all, though, he maintained quite a bit of fire and spunk. He played more today, and he seemed to feel quite good. So far, as of 11:17 tonight, he has not had another fever.

There is still the chance that this is just a viral infection–maybe his body remembering a cold he once had and reliving it a little (as one of his BMT doctors described), or one of us may be carrying something that our bodies don’t even detect because of our immunity, but his body is reacting. Another doctor suggested that sometimes neutropenic kids react to bacteria in response to things as simple as brushing teeth. It is so hard to say right now. For a day or two, the poor kid had a sore throat, and we thought that was the issue, but it went away too.

Our goal is to somehow keep Caemon fever-free over the next week. If he begins to recover, and his counts start to rise again, we will enter the BMT unit next Sunday or Monday. While the doctors will attempt to get the donor to reschedule her donation, if she cannot, her marrow will be harvested on the originally scheduled date, and it will be cryopreserved (frozen) such that it can be used when we need it. While this isn’t ideal, the doctors have assured us that although freezing can reduce the number of cells, because Caemon is so small and doesn’t actually require all the marrow that is harvested, any reduction in cells should not be an issue in the least. Therefore, while we certainly hope the donor will reschedule, we are confident that this backup plan is a sound one.

It seems, then, that we have our plan in place. Tomorrow, we should find out whether there are any fungi making themselves at home in Caemon. My prediction is no. I think he just likes to throw us curve balls here and there. He’s that kind of a boy. This does give us some time to slowly prepare ourselves for next week’s move to the transplant unit. There are things that have to go home, things that have to come from home to here. We have to wash all of his clothes and seal them up in plastic bags. We have to thoroughly clean his toys and anything else we plan to bring in. We need very specific supplies, which have to be prepared in very specific ways, and now, even though we may not go home, we can get those ready. Sometimes riding out the storm at base camp is the best thing one can do. It is our only option right now as we ready ourselves for this climb up our very own Everest.

For those who have been planning to participate in our Gathering of Light event, please know that this is still on. Now more than ever we need all the light we can bring to Caemon in preparation for the journey ahead.

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.

waiting game

We are in about Day 23 of Caemon’s most recent round of chemo. His treatment stopped on Day 8, so for the past two weeks or so we have been waiting for his counts to drop and then climb. They have started to inch up bit by bit. His platelets seem to recover most quickly, so they are on the rise, as are a couple of other counts. However, the cells that everyone is watching now are the neutrophils, and they are taking their time. Our doctor reminded us last week that he didn’t recover until Day 28 last time, so he is right on track.

Why does this matter so much? If Caemon’s counts recover, and if his neutrophils reach a “safe” level, we will get to go home for a few days before we are admitted for transplant. We all need this reset desperately, but our boy particularly needs some time free from tubes and beeps and a hospital bed. This next admission–the big event–is going to require him to be confined to his room for the duration of his stay. There will be no more playroom or wandering the halls to visit the nurses. This will be hard on our boy who loves seeing his surroundings, which is why it is so important that we have a few days of relative freedom.

In just nine short days, Caemon is going to be admitted as a bone marrow transplant patient. His conditioning regiment of chemo will begin, and will begin this process of taking the ultimate step toward saving his life and beating this disease.

a match

Today, we finally met Caemon’s bone marrow doctor. He stopped by to meet Caemon and to bring us a bit of news. We have a donor, one with whom he is very pleased, and she is being “activated” (this means she is being called to her local center for testing and screening to determine her continued eligibility and availability). He told me she is a twenty-three-year-old woman, no kids, and he has high hopes that she is going to be an exceptional donor for Caemon. You may remember when I spoke about having twelve total markers on which a donor can be a match. This woman is an 11 out of 12, and for Caemon, this is perfect because in his case, we don’t want a 12 of 12, for the risk of recurrence is too great then. They have found our donor.

Imagining an actual human being, a young woman who, if she is willing and able to go through this, is going to save our son’s life is humbling and beautiful. I learned her blood type. She is B-. Caemon is O+, but after transplant, his blood type will change to B-. It just so happens that B- is Jodi’s blood type. He will have the same kind of blood as his Mama. That, for some reason, resonates beautifully with me.

On top of having a person, we also have a date. December 3rd, we will be admitted to the bone marrow transplant (BMT) unit. The doctor predicts the transplant will happen on 12/12/12. Knowing all of this will happen in a month has me both terrified and hopeful. The doctors are all so pleased with Caemon’s response to his chemo that they seem to have a good deal of confidence about going forward. At the same time, this is not without a fair share of risk. It’s not without a difficult road of conditioning chemo, which will essentially destroy all of Caemon’s bone marrow and blood cells to make him receptive to the new marrow. He will be incredibly vulnerable to infection for quite some time, and that comes along with plenty of worry. However, we know the strength of this team. They are one of the best in the country, and that is no small matter.

We can take comfort, too, in the fact that we will have the same nurses there as we have had here. It’s lovely to know we will be well cared for as a family, that Caemon will have familiar faces keeping him smiling during those long weeks of isolation.

During his visit, the doctor asked Caemon when his birthdate was. When he learned this, he shared with us that Caemon’s is just a few days after his own. He told Caemon we would all need to have a big party for his fourth, gave me a broad grin, and made his way out. Yes, a big party will certainly be in order.

Even though we have had this glimpse into our very near future, we’re also living very much in the present with Caemon’s current round of chemo. It won’t be quite as long–eight days instead of ten–but he is reacting more quickly to it. He has had a couple of fevers, is developing his rash in response to Ara-C (cytarabine), and his counts are dropping quickly. Today, he needed a blood transfusion, and soon he will be neutropenic again. We are told his counts will take a bit longer to recover this time because his bone marrow is tired, but they are hoping to send us home again before we’re admitted for bone marrow. I just can’t believe that we’re really this close. Then again, I can’t believe it’s November either.

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.