Its been a bit without a good update so this will be a little longer. The last couple months have been tiring, not any one thing but really the cumulative effect of this journey. Sometimes it seems like this has been going on forever, sometimes it seems like it wasn't that long ago. Today, however is day 316. There is no real significance to that number, I was going to write an update on day 300, but that day came and went.
As you would see in the last update, we were able to spend Christmas together as a family. Eli was coming off a round of chemo that left him very immuno-compromised and thus in hospital for closer monitoring and immune support. We were all four together for nearly two weeks and grateful for the time. Siblings can't stay overnight in the hospital so Dana & I took turns sleeping in the hospital with Eli and at Ronald MacDonald House with K.
It was good to be together but it was Christmas in the Hospital with no other family which was hard. We are most grateful for the organizations, donors and volunteers who gave us so much. Christmas has always been somewhat low key in our family when it comes to gifts and such, we really try to not make it about what you get but the being together and celebrating the true meaning of Christmas. There's no way around it, Christmas in a hospital room sucks, but we are so grateful for the generosity of so many that want to make it suck less. It was overwhelming at times as items were dropped off at room from different organizations and even other families who have been where we were and just wanted to bless us, and the others on the ward.
Eli was kept in hospital until after New Years as we waited for his counts to recover which they did this week. He and Dana were able to get back to RMH for a few days while his counts continued to recover to the point he could start his next round, which he did yesterday. This is his third and, last round of immunotherapy which involves being hooked to a pump 24/7 for 28 days. This is the study drug he is on and has shown good results. The big bonus with it is that this treatment boosts his immune system which gives he & Dana more latitude as he just needs the pump refilled every three days. This treatment also does not get delayed once its started, unlike chemo which has often required recovery periods.
Once this 28 days is finished, there will be a rest week before starting the maintenance phase of treatment. Maintenance will involve out-patient care about three times every four months for which we'll travel down to Vancouver from home. Some of these checks may be done at the Prince George hospital but there will be a lot of trips down to Vancouver. These will be mostly single night trips but will go on for about two years. Bottom line is, Eli will be home, as we'll start moving back to normal activities in mid-February.
With the end in sight we are certainly looking forward to all being home together again. It will be difficult and stressful at times. We've been told families often struggle with the transition home after being in the hospital so long. It can be unnerving to not see the medical team on a near daily basis and to be so far removed from the hospital while your child is still vulnerable.
We are grateful for the love and support we've received from so many places. The journey is still far from over but we're certainly heading into a less difficult part of it.
