“How are you doing today?”

A question we ask and are asked countless times. A societal pleasantry that we are rarely honest in our reply. I’ve struggled with this over the past month because I’m not fine and I’m not OK with saying I am. I can tell you the average store clerk is not expecting to hear you just learned your child has leukemia and so you’re really not having a good day. I’ve started to respond with a “I’m just hanging in there” and found some just move on with the norm, some care to ask what’s up. Some days its easier, or at least less hard.

We’re coming up on four weeks into this journey now. Not much to update on as Eli continues through the first round of chemo, with his last dose in this round coming tomorrow. His counts finally hit zero earlier this week, which is what they want but it also means he is in the critical stage of having no  immune system. His numbers are now starting to recover, which is good but he’s in a pretty vulnerable state. We were starting to wonder where things were at but had a good meeting with one of the doctors this week who told us he is responding exactly at he should which was encouraging. We still wait for April 8 however when he has his next biopsy and we learn if he’s in full remission or not. That will determine the path forward and we really can’t know what things will look like until then.

Good news this week was Eli was cleared of the temporary diabetes so he no longer has to have his block sugar checked throughout the day or get insulin shots. The diabetes was a side effect brought on by a combination of the treatments and hopefully won’t return in future rounds as the combination of treatments changes. The steroids he's on are definately increasing his appetite and he is pretty must constantly asking for second break, third breakfast and mid-noonsies. This is expected but still needs to be managed. 

Other good news is that they are talking about discharging him to Ronald MacDonald House this weekend. This will be good and he and Dana have been largely confined to the oncology ward for the past four weeks. RMH will allow a little more freedom and activities but will also come with the challenge of having to figure out a new normal. At RMH there won’t be the vitals checks throughout the day or the lights and beeps of a hospital room but the magic cupboard where you put dirty dishes and laundry and they just disappear will unfortunately not follow them. At RMH you also need to feed yourself. There’s a great big fully equipped kitchen along with a lot of staples provided but we’ll be needing to get groceries and such. In some ways this will be good as Dana & Eli will be able to get back to more familiar food. We have family supplying Dana & Eli with much of what they need but we’ll need to get groceries too. We’re thankful the world kind had to figure out the whole online ordering and pick up thing over the past year :D

So how are we doing? Honestly its up and down. Being apart is hard on all of us. Dana and I have both hit the point where we stopped running on adrenalin and the building exhaustion hit us. Last weekend was really the first time since this all went down I really had a good sleep and woke up refreshed. I took a break and got out into my shop for the first time this weekend and started making a charcutier board and ended up making six, which was probably more rejuvenating than a good sleep. We're both pretty tired overall. 

Our plans are somewhat fluid at the moment, waiting on the next week. I’ll be down to spend some time with Dana & Eli in the coming days. Due to Eli’s current lack of immunity, I’ve been pretty much isolated at while working from home so that I don’t risk taking anything with me when I go down. Due to COVID restrictions RMH does not allow visitors so even once Dana & Eli have moved they will still be fairly isolated but we’ll see how things go. We have months ahead of us yet and so we really do appreciate the love and support shown to us.