As I sit here typing this, Jaymun is getting another platelet transfusion. He had a transfusion just two days ago, but this is to be expected when his body has been thrown into a tailspin with the bone marrow transplant. We can always tell when his platelet count is dropping because he gets nose bleeds easily. (Platelets are the components in your blood that help with clotting.) He's also been a bit more irritable and clearly not feeling so well. His appetite has almost disappeared and we are constantly trying to coax him to drink an ounce or two throughout the day. We try to balance the doses of morphine with how we think he's dealing with the pain. As his blood counts drop down to zero, we know that there will most likely be more issues to deal with, such as infections and mucositis. None of this is easy to watch, but we have been prepared to expect that these next few weeks will be especially difficult on Jaymun's body.
This transplant should be the final step in his treatment. In one week, Jaymun will be five months old. I can't help but look back at all the months behind us. Five months ago, we had a baby boy who arrived in this world with cancer. For nearly five months we have been juggling a chaotic schedule of parenting, running a business, and living full-time in a hospital. I am amazed to see how our family has adapted to the night and day difference of what "normal" used to mean.
Five months ago, Jaymun> started his first round of chemotherapy when he was three weeks old. Three weeks old to the very day. Dave and I brought him to Children's to have his central line inserted. We had to hand him over to the surgeon, who placed a line inside of his tiny body that would extend out through a hole in chest. (These tubes, or lumens as they're called, have allowed him to be hooked up to his IV fluids, medications and chemo without needing to be poked with needles daily. They also allow the nurses to draw his bloodwork to be sent to the labs for testing.) I will never forget how small and fragile he looked lying in his crib when they wheeled him out of surgery. I was sickened by how those lines poked out of his little chest. I look at this photo of Dave holding Jaymun when he woke up from the anesthesia that day and it overwhelms me that our little baby had to go through such devastating events at such a young age.
They escorted us up to the HOT unit after his surgery. It was an unfamiliar place to us, filled with strange machines and medical staff. The thought of staying here for months was frightening beyond description. I dreaded it. I couldn't comprehend how I would be able to be separated for so long from our other children. I had just given birth and now I had to cope with recovering in a dreary hospital room, all alone and overloaded with those wonderful post-pregnancy hormones.
Room 5514 was Jaymun's very first official room on the HOT unit. We walked in with our little baby still sedated from surgery, not knowing what to expect. It was then that we met She Whom We Love and Adore. The infamous Nurse Bonnie, of whom much has been written already on this website. She greeted us with a warm smile and I knew, I knew that if we had to embark on this journey of Jaymun's, I would feel much better with her by our side. She has not disappointed my expectations. Rather, she has far exceeded them. We have been blessed to have her in our lives at this hospital. Blessed beyond measure.
Jaymun has had to move into a sterile, pre-scrubbed transplant room. They sent in a special cleaning crew that removed all the furniture and scrubs the ceiling, walls, floor, even the inside of the heater vents. It takes hours for them to clean the room in preparation. Before the patient can move in, the room is also inspected by a supervisor. We then had to scrub everything we owned with special wipes before transferring it all into his new room. (And when I say "we", I mean "me"--Dave took flight before this particular move happened!) There are twenty four rooms on this unit. We've stayed in Rooms 14, 6, 10, 2 and 20. I think it's significant to tell you that Jaymun's final room is 5514 once again. The very room he started in is now the room he's ending his treatment in.
When Jaymun was first admitted to the NICU, his resident doctor was a Dr.Vander Lugt. If it sounds suspiciously Dutch, that's because it is. Dave was thrilled to meet a fellow Dutchman in the hospital. (Being a hearty mix of nationalities myself, I don't quite get the whole "Dutch" thing myself, but apparently it was a huge selling point with Dave!) Dr. Vander Lugt was the first doctor to see Jaymun at Children's. He was the first contact we had with any news concerning Jaymun's test results, with his prognosis, and our main link with the attending doctors. I remember him being a very tall, very gentle, very quiet man. When I recall that first week of Jaymun's life and I bring back memories of the NICU, Dr. Vander Lugt is closely connected with every image I have of those early days. He was extraordinarily compassionate towards our family and quite sensitive to the fact that we had just been handed a bombshell with Jaymun's cancer diagnosis.
The residents rotate throughout the hospital on a two week and sometimes monthly basis. We've gone through quite a few residents during our stay here on the HOT unit. The day after Jaymun's transplant, the residents changed yet again. There are dozens and dozens of resident doctors in this hospital. You will never believe who walked into our room December 1st. The Dutchman himself. Unbelievable. The very same room and the very same resident. We wouldn't have planned this ourselves in a million years.
I'm not a superstitious person. I will never understand people who base their entire life on reading horoscopes or having their palms read. I don't believe that our future can be mapped out for us to know in advance. But there are times that I can't help but see how God brings all the events and circumstances together in just the right way at the right time. Some would perhaps shake it off as mere coincidence. I know better than to think that things just "happen". I wholeheartedly believe that it's more than the planets aligning themselves in the universe. This room, this resident, this whole experience..it's been an emotional rollercoaster of ups and downs.
I'll never forget the beginning. I have yet to see the end. But this journey of Jaymun's definitely has the distinct feeling of coming full circle.