In Greek mythology Homer described a fire spitting monster with the head of a lion, the body of a goat and the tail of a serpent. He named this creature a chimera.
While these past weeks of intense skin itching and burning have significantly impacted Aaron’s physical and mental state, and each day and night he has wished that he could shed his skin like a serpent and start anew in virgin skin, he has not been so transformed. Still the very process of a bone marrow transplant turns an individual into a chimera as the DNA in their blood is different from the DNA in the rest of their cells because it is, in whole or in part, from the donor.
We are now in the time of the chimera of Aaron and Sarah. Aaron hasn’t yet had a chimerism analysis to survey the engraftment process precisely and determine how much of his newly developed hematopoietic system is from Sarah or himself—our first will be next week—but we can officially declare that Sarah’s cells have engrafted.
We saw the first indications of engraftment a week ago at day 11 with a slight increase in the white blood cells and hematocrit. At the time Aaron’s doctor was hesitant to say for certain that he was engrafting because he was still within the nadir and the counts can bounce around a bit. The white blood cells are generally the first to normalize followed by platelets and red blood cells. His doctor indicated that it was too early for Aaron to be out of the woods for transfusions and that he would still likely need red blood cells by the end of the week. Aaron was kept on neupogen injections as it was suspected that these counts would also drop without support.
Bone pain and flu like symptoms were anticipated with the engraftment process as the cells begin to replicate so quickly in the marrow space that it becomes crowded and can cause some discomfort before they are mature enough to circulate in the blood. Apparently the pain can happen anywhere with discomfort in the low back, sternum, hips, and femur most common. At this point, Sarah’s cells were not replicating enough to maintain a full complement in the blood, but there was evidence of them setting up shop in Aaron’s marrow and getting to work. This new immune system is more similar to an infant’s and not at all mature. With this immature system and the further immunosuppressive medication that keep the breaks on Sarah’s cells, Aaron will have to be very careful for many months. But as the week wore on, we were hopeful that the counts would continue to strengthen day by day.
By Tuesday, Aaron’s hair began to fall out in large clumps which exacerbated his itching and so on Wednesday, I shaved his head. With the bald head and mask and gloves, he actually began to look like someone who had gone through a major medical situation. Around the hotel, people moved to the side when they saw him coming. A small child pointed to Aaron’s mask and shrugged his shoulders as if asking what’s wrong. We were told by the hotel to take down our usual signs that we placed on the washer and dryers requesting that the clothes not be removed from the machines as they were for an immuno-compromised cancer patient because other guests were frightened for their own safety. But within the confines of the hospital setting, Aaron is amongst his peeps and everyone smiles and nods with acknowledgement that they are each dealing with their own battles.
With each day that passed Aaron’s numbers continued to improve and he never experienced any adverse engraftment symptoms but his itching hit new levels of torture. Despite Aaron being a huge topic among the transplant teams for his mystery itching, no one had any answers as to what was causing the itching nor how to best control it. Many drugs were thrown on board to attempt to manage the symptoms but no amount or combination seemed to do the trick. Aaron grew increasingly frustrated and began to take more drugs and test out his own theories but we found ourselves still up every night with him ready to jump off the roof by 4 am.
By Friday, engraftment was officially confirmed; his counts looked amazing and he had made it through these early weeks without any blood products. I was nervous that Aaron’s counts had never completely bottomed out and that this might be a negative indicator of how well we had softened his own immune system prior to transplant. Dr. Soiffer’s nurse, Amy, told us that she was completely comfortable with the level of the dip in Aaron’s counts and that it absolutely proved that he was going through the process and that he was doing amazingly well. She said it was very rare to make it through this process without transfusions and she was more than encouraged by the beautiful blood work.
Amy then asked how he was doing aside from the itching and he explained that there is no longer anything outside of the itching. The itching had become all-consuming for everyone with days and nights revolving around trying to manage the extreme discomfort. Because his Hickman line was still tender and red, and his good overall performance with count recovery, Aaron convinced his team that he was no longer willing to just try to manage the symptoms. He wanted to find the cause and his first line of inquiry was the Hickman. They wanted to maintain the line for a longer time because his engraftment was not yet robust and the possibility for readmission into the hospital for infection was still a possibility. As we further discussed the amount of medication Aaron was taking to control his itching, Amy warned him that they lose several transplant patients a year to bad choices. Aaron persuaded them that he would be on better behavior if they were willing to take it out immediately so that we could at least eliminate it as a culprit.
The removal went smoothly and we returned to the hotel full of hope that the next 24 hours would show some improvement in the itching. It didn’t. In fact, the itching progressively became worse. The night itching continued to be the most difficult to endure and then Sasha stopped sleeping through the night again. By Sunday, it was clear that he was sick with low grade fevers and congestion. After another long night, I was sick by Monday morning. Monday night was the most challenging night of itching. We had an emergency appointment yesterday to once again review the list of possible causes and potential remedies. They administered steroids to try to stop the itching for the night until Aaron could see his own doctor but we spent another sleepless night experimenting with more of Aaron’s own itch management theories.
At this point, Aaron continues to be an enigma to all of the transplant team and dermatologists at Dana Farber with his mystery itching and we are both desperate for answers and solutions. When he is not in a drugged out stupor, he spends most of his time researching possibilities to end this symptom once and for all.
Many days I have sat down to write of this time since my last update and wasn’t sure what to say. It seems to us that so much is happening and yet nothing is. Days have passed and Aaron’s situation has not changed except to become more unbearable. It is difficult for any of us to relax. We are exhausted and momentarily blinded by this unexpected outcome. It is so frustrating to know that if we could only discover something to alleviate this problem that Aaron might be feeling really good considering he has just had a stem cell transplant. Aaron is not a man used to restrictions and his life now is completely different. He cannot leave the hotel room because changes in temperature seem to aggravate his skin. He cannot easily concentrate because he is so preoccupied with itching. My mind is adrift with how to soften the edges of these vulnerable days and also with the next fearful thing.
With engraftment, we must be on the lookout for graft versus host disease. The confounding issue is that it often begins in the skin and with Aaron’s skin already stressed, I worry that this too could reach alarming levels. In the shadows of the night, I lay back and listen during the moments that Aaron manages to sleep and pray that I will find a way to console him. Until then I follow him as he paces, keep an eye on him as his bathes so that he doesn’t fall asleep then in the lumpy oatmeal soak, and soothe him in any way that I can. I have a mental picture of him reemerging one morning against all odds with new skin like a serpent and to this I will exclaim hallelujah.