Round #1, Day +19 Update

Still in Toronto...

Monday will mark the end of our fourth full week here in Toronto. It has been a long time since Noah has been home, since he has seen his older sisters and since we have all been together as a family. Things continue to progress but the progress is slow and steady, where I would like it to be quick and easy.

But this is life in cancer treatment. And we know that things, when they are bad, could always be worse and that four weeks or longer in the hospital for this type of treatment is normal.

Since the last post, Noah's blood counts have continued to improve. There was an initial spike in numbers caused by the G-CSF - a drug used to stimulate bone marrow and blood cell production - followed by a drop and then a slow and steady recovery of white blood cell, hemoglobin, platelet and neutrophil counts. Today, Noah's officially passed the threshold for neutrophils and is no longer neutropenic. He now has enough immunity to be allowed outside of his pressurized room.

Except that Noah is no longer in his pressurized room and he has been moved to a low pressure isolation room, which he is not allowed to leave.

Yes, there's a story here.

Wednesday evening, Kim and the nurse noticed a small red mark on Noah's right cheek. I noticed this same red mark on Noah's cheek Thursday morning and learned that discussions around the mark had concluded that, most likely, it was caused by the tegaderm being used to hold the nasogastric tube to Noah's face. This made sense as it was right below the adhesive and because Noah had developed other sores while his blood counts were really low in that intensely sickly time between chemo and the grafting of his stem cells.

All through the day I continued to be grateful that the bumpy red splotch was nothing more than a rash because it looked a bit strange.

After spending the day with Noah, Kim came back to the hospital and, almost right away, the red blotch was reassessed and determined to be something much more concerning than a bit of a rash caused by old dressings. The immediate thought and most likely culprit was that Noah had chicken pox. This is not to say that he somehow contracted chicken pox. More likely than not, the chicken pox virus was already living in his body and with his immunity and immunizations wiped out, the virus was manifesting itself in what appear to be a bumpy red patch on his cheek.

Suddenly, Noah had to be moved from a room that was designed to push all air borne entities out, into a room that would keep all airborne entities in. This was for the sake of all the other patients on the bone marrow transplant ward who are also incredibly vulnerable to diseases like chicken pox. The move involved transferring Noah and all his possessions to the regular oncology ward which, thankfully, was not too far away, on the same floor as bone marrow transplant.

Before confirming the results of blood work and swabs, Noah was put on anti-viral medications to ensure that the chicken pox (which were now being referred to as shingles) did not worsen. There was concern about the location of the spots and about the potential for the shingles to spread through the nerves to his right eye.

I can now report, very gratefully, that the spots look to be improving. Their appearance is lightening and the bumps are receding. Once they "scab off", he will be in the clear. Tests on Noah's blood and done through swabs did not show presence of the virus either, leading the doctor and nurse practitioner to conclude that the virus is not widespread or heavily present in his body.

Phew.

But, he still can't leave his room until they're gone. Thankfully, the isolation room is much bigger and "cozier" (if a hospital room can be considered "cozy") than the pressurized room. So there is a bit of an upside here.

And there are still some positive developments that make us hopeful that a return home is coming on the horizon. Though Noah is still not eating and drinks only scant amounts of water, as of today, he is off of the TPN that was feeding him intravenously. He is now getting all of his nutrition through the NG tube and he is keeping it down without much nausea. This is great news because it is one of those hurdles that needs to be jumped over before he is allowed to leave the hospital. We can feed him nutrition through the NG tube at home. Of course, we would much prefer that Noah eat regular food but, though he's tried a nibble here and there, it must all still taste very nasty to him because he is quick to spit out whatever goes into his mouth.

He is still on a few pain killers and they are very slow to wean him off of these. They are worried about withdrawal and we are glad that they are taking care to ensure he is still comfortable. I would love to see him off of the drugs but I also appreciate that they are unwilling to risk progress just to hurry Noah home.

Noah has been given some medication to help get his stomach and bowels moving. Again, this is interesting because he went straight from one set of digestive problems to the exact opposite set of digestive problems. This drug has helped him to move things along so that his body can relearn how to take in energy and nutrition from food.

Many of these medications are now being given orally, which means that they can be given by his parents if he is allowed to go home.

More good signs.

Noah is also more relaxed and, for the most part, is comfortable. He sleeps well, he plays and is happy much of the time except for when he is bossy which is also a good sign. He is really into his shows, a sign that he probably needs more stimulation.

He needs to be re-introduced to the business of ordinary home life.

And so things continue, bit by bit, to change and move in a direction which we hope and pray will bring us back together as a family once again. It is getting harder to wait, of course, and like waiting for presents, it gets more difficult the closer the time comes but the gift will be worth the wait and so we pray for patience.

And of course, we pray for little Noah.