Halloween evening. We stole the opportunity to go trick-or-treating despite having to return to hospital directly afterwards. Gavin learned how to say “Trick or treat!” and practically chanted “Candy, candy!” as we went around to a few neighbours’ houses. When we got home he immediately pulled a pack of Smarties out of his bucket and passed them to me saying, “candy, try!” Okay, then. He enjoyed those Smarties more than any child has ever enjoyed his Halloween treats.

Home is hectic. We escaped the clutches of 8B on Wednesday afternoon, and as soon as Gavin stepped foot in the back door he made a beeline for his kitchen and immediately starting playing madly with all of his toys. He was rather irritated to be told that, actually, it was naptime and we could play later. Once asleep though, he slept for two and a half hours, and shamed as I am to admit it, so did I. Craig was a busy bee and unpacked our stuff and ran errands, e.g. the all-important wine and beer run.

DAY 17

It’s late and I must drag my seriously fatigued self to bed very soon but couldn’t resist sharing some exciting news. Gavin’s counts look good enough to release us home for a few days. Naturally, we have to return on Sunday but we’ve decided that since the opportunity has come to go home we should definitely take it!

I know that four days at home can be so beneficial to everyone’s mental state, and Gavin is looking forward to spending some time outside. Tomorrow will be ridiculously busy, starting off with Gavin’s hearing test. We are desperately hoping for good news there. Once that’s done with we need to just pick up some meds, pack up and head home.

DAY 16

I’m very excited and relieved to announce that today we have achieved engraftment! This means that Gavin’s stem cell transfusion worked and that the stem cells have now integrated with his system, and his bone marrow is producing new cells on his own. His poly count is still low, at .5, but we are now no longer completely isolated and are free to leave the fishbowl and venture out to the family lounge, where we are currently playing with Bubby.

DAY 12

Reunited! Of course, when I showed up today Gavin was pleased but didn’t fling himself on me in a frenzy of welcome as I might have imagined. After all of the dramas of yesterday I was hoping for a quiet day and that’s thankfully what we got. I spoke to the charge nurse going in and assured her that I felt fine.

Gav was getting a blood transfusion when I arrived and very quickly perked up after that. We spent most of the morning playing guys and Legos, and then I decide it was high time to break out one of his leftover birthday presents, a cash register. He has been getting a lot of prezzies lately, and has become a teeny bit nonchalant about the whole thing. He was happy to finally open the mystery box though!

DAY 11

Daddy or Bubby should really be writing this post because I spent the whole day feeling completely powerless, stuck on the outside whilst all sorts of things were going on in Room 5, 8B.

I woke up this morning not displaying any symptoms and wondering if I’d really just needed the marathon 11-hour sleep that I had. After discussing it with the Craig, we decided that I should take an extra day to stay away, just in case. So I’ve spent the last two days popping Cold FX, vitamins C and B, oil of oregano, and spritzing my nose with Hydrasense. And I also just downed a cup of hot lemon, garlic, ginger and honey to boost my immune system. I am still tired, but not sure if I actually have anything, so find myself analyzing every sniffle and possible throat dryness. I am keeping fingers crossed that I’ll wake up tomorrow feeling 100 percent and can then head back to the hospital. Apparently I have to check in with the charge nurse first so she can evaluate how I look.

DAY 10

This morning I went over to the hospital, feeling completely drained and just not very good. I had to wait for Craig and Gavin to wake up for once as they were having a lie-in today, and when I went in I started the process of getting Gav’s room ready for the day. As I put out the play-mats and toys, and then prepared Gavin’s bath, I noticed my nose running a little bit and thought “Uh-oh. This doesn’t look good.” Gav’s WBC was down to almost zero today, so after conferring with our nurse, Jen, I put on a mask and tried to avoid Gavin as much as I could.

DAY 8

I don’t have any energy to whip up an interesting or very informative post. It has been a pretty long weekend. The good news is that Gavin is still in good spirits and has continued to be happy and playful. He has been a little bit nauseated, we were quite unhappy on Saturday to discover that, without consulting us, his docs has decided to cut out one of his nausea-control drugs, because he had got through one day without throwing up. It seems like a bizarre decision for these people when they should well know that the delayed nausea from these drugs often lasts TEN days or even more.

DAY 6

I’ve had a lot of people say to me lately, “You’re so strong, you are doing such an amazing job.” The truth is that I don’t feel strong in the slightest. The true strength around here is coming from my son and my husband, while all I feel like I’m doing lately is throwing temper tantrums and sobbing inappropriately all around the hospital.

To give myself due credit, I’ve done the best I can in these very difficult circumstances, but my natural pessimism keeps swinging my moods around radically. It’s then that I need my husband to pull me back on track. I guess, like anyone, when I receive new information, I need time to process it and accept it. Yesterday, I finally had a visit from neurosurgery to discuss Gavin’s shunt status. It has been three months but we never really got a debriefing from them. I read through the hydrocephalus handbook today, and some of the facts were very difficult to hear. There is no guarantee that any or all of these things will happen to Gavin, but everything I read, I instantly think, oh God, that’s what’s going to happen to him. I wish I could just believe in a positive outcome as purely as Craig does. And accept that there will be side effects down the road that I did not anticipate or desire.

This has felt like an exceptionally long day, but in the end turned out all right. After all of the frustrations earlier on, the most positive thing was that Gavin’s stem-cell transplant went perfectly well. He didn’t have any reactions and was taken off of his monitors a few hours later. He was on Demerol, so was quite sleepy and not breathing quite as he should’ve been while sleeping. Once he woke up though he felt quite alright and we spent a couple of fun hours together playing with toys and drawing pictures on the window with his new pack of window crayons from child life.