July 9, 2015

Yesterday we spent all day at the hospital for transfusions. Stuart and I have made the decision, with support of our Team, not to go back again. The transfusions are of very little benefit now, in terms of providing Ollie with sufficient energy to do things that are enjoyable to him. Getting to and from the hospital is an ordeal, as the slightest movements are very painful because of the extreme swelling all over his body, and the transfusions only add to the fluid overload.

Ollie is sleeping 20 hours a day on average (although sometimes he is conscious enough to hear when we talk about people visiting and will say “no visitors!”). When he is awake he may spend a little while watching TV or his iPad, and maybe trying to eat a little, but tires very easily and goes back to sleep. Although his breathing is fast, he is not conscious of being short of breath for the most part. He has a morphine pump which he is able to operate using a small button. The morphine, as well as controlling pain, is very effective at relieving anxiety related to shortness of breath. The analogy used by our doctor is that after climbing 20 flights of stairs you would be gasping for air; if someone gave you a dose of morphine at the top of the stairs, you would still be gasping for air, but you wouldn’t care.

We’ve had a bit of a rough transition here at Emily’s House, but things are settling down now and we still feel this is the right place to be. Jack is staying with us and quite comfortable being here. He takes off during the day to hang out with his friends, sometimes at our house, so it is a bonus that EH is in our neighbourhood.

Everyday is an emotional roller coaster for us, of course, but yesterday was especially so. Because we made the decision to forego further transfusions while we were still at the hospital, it made leaving the hospital very emotional, knowing we wouldn’t be back. Sick Kids has been such a huge part of our lives for the past 18 months. Leaving there means leaving so many amazing people we have come to love, but also that we are that much closer to the end of this “journey” (hate that word but can’t think of a more appropriate one).

I get so very angry these days. I was speaking to a staff member here about some issues we’ve had here the last couple of days (that are now corrected), and how, although they would seem trivial in any other context, they are major to us at the moment. She said they may be “little” things but if they affect you negatively right now, they are big things and should be treated as such by anyone around us. This especially applies to Ollie. Awake time is precious, so if he wants to watch tv, for example, and the TV has not been fixed, it is a really big deal because he shouldn’t have to deal with any frustration or disappointment, and we shouldn’t have to watch him deal with it.

So, although I have been grateful for the many, many kind things people have done, or offered to do for us, I have been raging at the odd thoughtless person we encounter, or anyone who causes my little family a moment of stress or upset. People who really care for us are abiding by the “Grief Circle”. Comfort in, dump out.

I guess that was part update, part vent.

I’m not sure how often I will update, or even be on FB for the next little while. Please still comment and post here, or send me messages, but I may not respond. If you need to ask me something or tell me something, please message my sister, Zoe Carpenter. She will relay any questions/information to me. I’d also prefer not to receive texts unless absolutely necessary.

Thank you all for your love, help, patience, yummy treats, etc. ❤️

July 4, 2015

Hi all. Turns out Ollie has an infection in his central line. He is being given IV antibiotics and we hope will feel a bit better. Today we were at Sick Kids all day for two doses of IV antibiotics, platelets, blood and Lasix.

Ollie slept all day. He is becoming increasingly swollen from all the fluid his body is retaining, in spite of the Lasix. By the end of the day he looked like a boxer who has gone a few too many rounds. It is very upsetting to me, and uncomfortable for him, but I’m not sure there is anything that can be done.

Anyway, by the end of the day he was watching his tablet, talking, and asking for food. He was also a grumpy little bugger, but we’ll take it.

Yesterday, Stu went to see a paediatric hospice called Emily’s House.

http://www.philipazizcentre.ca/emilys-house/

He really liked it. I didn’t get to go, because I couldn’t leave Ollie, but hearing so much from Stuart and from our PAC Team, and having driven by it countless times, I trusted that it could be a good option for us.

I knew all day that Stu was convinced EH was the place to be. For me it was a day of agonizing over the decision. Should we stay at the hospital, where we know everyone, and it’s familiar to us, but Ollie hates it? Should we go home, where we are burdened with the lions share of nursing responsibilities, cleaning up, doing laundry,etc., the last few being at least distractions, if nothing else. And where we would receive the least amount of support medically speaking. I have already experienced a fair amount of panic thinking of when things get really serious. We don’t know what could happen; there could be seizures, bleeding…

I cried on the shoulders of the two fantastic nurses we had at Sick Kids today, too many times to count. I spoke to Dr. Kevin, our PAC Team doc on the phone a bunch of times. He knew that EH would be the right place for us and I finally agreed to try it. If Ollie is well enough to protest in the coming days, then maybe we’ll go home for a while, but he has already declared it “better than Sick Kids”, thanks in no small part, I suspect, to the superior WiFi.

So we are settling in here now. We have a lovely room with a beautiful fireplace and a porch. The staff here will make anything happen for us. They will feed us, do our laundry, whatever we need. It is in our neighbourhood, which is very reassuring.

All that being said, we are here to see the end of our son’s life. I am very angry at the unfairness of it all, but I will do anything to ease his pain and see that he knows no fear. That is an honour and a privilege, and my duty.

Also, I am scared shitless, and an emotional wreck. Don’t mistake my posts for strength. They are cathartic for me, but I’m still losing my shit here.

Xo

July 2, 2015

Hi all. Well, since we were discharged a few weeks ago, things have been pretty stable. Ollie has lower energy days and days where he can do more than other days. Appetite has been up and down but mostly he has been eating ok. He’s been getting transfused regularly.

Yesterday he slept pretty much all day on the couch, never ate. Late afternoon we noticed he was breathing very fast. Eventually he spiked a pretty good fever. We called the on-call palliative doc and he came over. In addition to the fever, Ollie’s respiratory rate was in the 40’s (normal for him mid-20’s), his heart rate was in the mid-150’s (normal is 100) and oxygen saturation was in the 80’s (normal is mid-90’s). The breathing stuff is what freaked me out. It’s one thing to have this idea that you will just keep them at home for the most part, but when they are out of it and having breathing difficulty, that shit is scary.

We decided that since he’d still been pretty ok just the day before, he could benefit from being checked out. The hospital did cultures and CBC, and maybe broad spectrum IV antibiotics, and transfusions could perk him up.

It is so nerve wracking to sit in a room with a monitor and see those numbers go up and down, with nurses rushing in when alarms go off, trying (and failing) to get your child to take oxygen. Eventually we asked them to turn off the monitor. We are so lucky to have the amazing PAC Team we do; the on call doc came right down to the ER and talked to us at length about how our decision to come in was the right one, and gave us perspective on the importance, or lack thereof, of oxygen saturations. Apparently in studies, some people who experience low oxygen say they feel fine, whereas some who’s O2 seats were 100, felt bad. Bottom line is, if a palliative patient has low sats but they freak out when you put a mask on them, then it may not be worth it. Morphine and Ativan can do wonders to ease the feeling of breathlessness.

Anyway, Ollie had a chest X-ray in the ER, then we got up to the ward around 11pm. His BP was also low, which can generally be solved by giving fluid, but he is already fluid overloaded, which contributed to his breathing issues. So, a fine balance has to be achieved. Overnight he received blood and platelets.

In the morning, his breathing and HR were better (blood products can do that) but he was so swollen from fluids. Ordinarily they would give Lasix for this, but that can compromise BP. Eventually his BP stabilized. He was given albumin to coax the fluid out of his tissues, then Lasix to make him pee (and he did, almost a litre), then more platelets.

The chest X-ray was “hazy”. The docs believe this shows that the JMML has infiltrated the lungs, which is common for JMML. His white blood cells and blasts had doubled from Tuesday to yesterday, also a sign the disease is progressing. This was very shocking to us. We didn’t expect that things would move so quickly, so suddenly. I didn’t think I could feel more shock than I already have, but I did. I didn’t eat for almost 24 hours, and barely slept last night. I could feel a knot of anxiety in my chest all day. I was fortunate to be able to speak to the psychologist for an hour today. It helped so much to have a safe space to express myself and “let go”. I was reassured that we are doing the right things.

So we are home. Ollie is hooked up to a little pump that delivers a continuous, minute amount of morphine, but has a button that will allow for a bolus of a larger amount up to every six minutes. He is on oral antibiotics and an additional medicine called hydroxyurea, which may help slow down the proliferation of blasts.

Ollie has been playing video games since we’ve been home, and being quite chatty. He’s trying to eat but not liking anything he tries.

Ollie is calling the shots (not that he didn’t always). I don’t know how much he’s going to want or be able to do from here on in, but we will treasure every time he speaks, wants to eat, asks to something or see someone…the line that defines a good day keeps moving.

All that support and love we’ve been receiving, well keep it coming. In the days/weeks ahead we will all need it. Pray for wisdom for us to make the right choices and comfort and peace for Ollie, Jack and Stu and I, and those closest to us.

Xoxo

June 21, 2015

Hi all. Good weekend. Friday was a ride in a Ferrari, Mohawk hair-do, and at least half of Inside Out;) Saturday we drive to Richmond Hill for a get together with Jennifer Dietrich, John Grande, Carolyn Fell, Sally Williams, Donal Lucey, David Ball, Vicki Badham, et al, and our date with Enzo Ferrari and Mustang Boss!

Today was hospital, only platelets required, so a quick trip. That left us time to visit with James Muirhead for Father’s Day. Ollie got to spend the afternoon with Nico Malevris, which involved video games, but a whole lot of trampoline time too.

I got to go for a walk on the boardwalk with some friends, then Jack, Ollie and I had fun on the trampoline.

Ollie is tuckered out but hopefully ready for a fun filled week!

June 17, 2015

Hi all. We are back from a fun time at GWL. The kids had a blast. It was so great to have cousin Jamie with us. Ollie really loves her. We had fun in the waterpark, arcade and playing MagiQuest (hence the wizard hat). Ollie pigged out (well, we all pigged out). This has been the best couple of days for us, in terms of having our “old” Ollie back. Tonight he even ventured to the backyard and played on the trampoline! Hope it lasts a while.

The plan for the rest of the week is hospital tomorrow, Friday morning we meet the doctor who will be our primary physician here at home. A friend has arranged for someone to take Ollie for a ride in a sports car (a Lamborghini I think) on Friday morning, then we are going to a get together hosted by a friend who has arranged for a ride in an Enzo Ferrari. Next week is a helicopter ride over Toronto, and hopefully watching Jurassic World. Other ideas I’m having include the Science Centre, Toronto Island, and perhaps Wonderland. Hopefully he’s up for it all.

I had a much needed dinner out with dear friends. It’s my version of Stuart’s hockey games. 😉

Thanks for all the messages, offers of help and food, boxes of Swiss chocolate, etc.

Love you all.