The transplant itself, when verbalized, sounds pretty straight forward. Since Joren and Keian are the same blood type, it didn’t require as much separation. Within a couple hours of Joren’s surgery, they were up in Keian’s room transplanting. It’s much like a blood transfusion, as it hangs on his IV pole. It’s not run by a pump, but rather relies on gravity to enter his blood stream. The infusion took just over 2 hours and a nurse was here the entire time to monitor any complications that might have arised. The infusion itself went extremely well, as did the proceeding days.
Heading on into day +3 is when the mucositis started to hit, and it hit hard. I read up on mucositis so many times, but honestly no amount of information I found on the internet quite prepared me for what I was seeing. It started off with a mild sore throat, and by the end of the day, his pain was at screaming level. By the next day, his lips looked like cottage cheese and by the day after that, there were open sores on the insides of his cheeks. What we weren’t actually physically seeing was the fact that throughout his body and tummy were suffering from the same issues, which explained the sudden onset of vomiting and tummy pain. They tell us that his insides would look like raw ground beef. When he vomits, he is vomiting all the mucous and stomach lining that is sloughing off. That’s what was happening everywhere. At one point, his tongue looked like thick fish batter, but was actually skin. He started on Morphine for the pain, which didn’t seem to take enough of the edge off, even though he was at the maximum dose, he was asking regularly for a bolus (a quick acting rapid infusion of morphine) on top of his continuous infusion. On day +6, we were visited by what they call the “pain doctors”, they are pretty much that. They monitor kids that aren’t getting as much relief with the regularly prescribed drugs. They told us that the next step would be to add a new drug, but unfortunately due to the fact that he has so much going through IV, there was literally no room to add it.
This meant peripheral IV. Ugh, no way! We literally said that. I know, sounds a little harsh, but this was our thinking. There has to be something else they can try before having to challenge him with an IV in his hand. Not only is he terrified of this, but we were also concerned that with non-existent counts that any extra pokes would put him at a risk, even if minimal. I really don’t blame him; they hurt like hell when your veins are deep. Unfortunately, he inherited this from me. Not one of my better things to pass down to my boy. We were right, there were actually a couple things to try. First up was to switch from Morphine to Hydromorphone – same family of drugs, just different formulation. I am so happy that we refused the ketamine through IV, as it seemed that the Hydromorph did much better. By the next morning, he was drinking water - he wasn’t able to drink, let alone swallow his own spit for the 3 days prior. It got better for about 2 days and his lips started to clear, but when he woke on day +8, the pain returned tenfold. Increasing his infusion dose and additional rapid bolus wasn’t doing much. For a couple days I was able to say that when sleeping, he was in no pain, but yesterday morning, I noticed moaning and wincing even during sleep. Another increase in his continuous drip and today is so much better. Yesterday, he was wincing for most of the day, but by late evening, he was able to sit on the edge of his bed to put together Lego with Daddy. Today, though still in pain, it is managed pain and since today is better than yesterday, I say it’s a good day!
He had an unexplained high fever for 6 days – literally unexplained. Tylenol wouldn’t touch it, so it was skyrocketing 24 hours a day. They did cultures every 2 days, CT scan, x-ray and abdominal ultrasound, all of which were clear. It’s been 2 days now with no fever, though he will remain on the antibiotics until his counts start to come in. Tomorrow is day +11 and counts are expected to come anytime between day +14 and day +30 – we hope to be sooner than later, as the mucositis will not begin to heal until it has some help from his new immune system. Throughout this whole time, he has remained stable, which from my standpoint is a success.
We celebrated his 6th birthday yesterday. It really is incredible how fast time really goes. Joren is just now started to walk and it seems like yesterday when Keian was doing the exact same thing. It wasn’t the best day for him, but we did manage to get a couple smiles when he was opening some presents. We’ll have lots to celebrate once he is finished treatment, so we’ll be planning to have a huge party, for so many reasons once that day comes. He’s ridiculously excited for that time and I don’t think he’s quite wrapped his head around the fact that we’ve said he can invite anyone he wants. This is a huge, life-changing thing going on here in this very room. Not only life-changing, but life-saving. We’ll deal with all else that arises as it comes over the years. We’ve learned to take one day at a time, heck, sometimes an hour at a time. Things change in minutes in this room. The guide lines are pretty strict when it comes to what enters this room and how it enters. Everything that enters must be wiped down with virox. Any toys that enter must be new, unopened in packaging. Any clothes that enter have to be washed under a special protocol – wash and dry in hot. Immediately place clothes into a sealed tote that has been sterilized with virox. Wipe outside with virox and place immediately into room. His bedding is changed daily, while he is in the bath. He uses special soap and cream to help with skin integrity that commonly follow with bone marrow transplant. As much as we’d love to be in here as a family, it’s hard to bring Joren in for long periods of time. Because of his love of putting things in his mouth, it’s near impossible to bring any toys in here for him, and of course with him starting to walk, the last thing that he wants is to be held in our arms. We’ve been getting help with Joren, spending a few nights away here and there and then on days that he’s “home”, Ryan and I are trading off at the trailer. Sleep is a hot commodity over here and it all seems to have gone missing.
Ryan and I remained pretty secure with the fact we thought we could manage on our own. Day 0 proved us to be wrong. Our nurse sat down with us that first day and said “you need to ask for help, or you’re not going to make it”. I kind of took what she said to heart and did one of the hardest things for me and asked for help. Some beautiful people have came to our rescue with meals, items we’ve needed and even some presents for Keian on his birthday. We’re supposed to limit our exposure, due to Keian’s fragile state and therefore even too many trips over to Safeway increase our risk of bringing something back to him. It’s not a risk we can take, so the hospital has become our home…very quickly.
Last weekend, Keian’s godmother put together a meal train for us. I can’t even describe the generosity of people, some we don’t even know. This has been a HUGE burden taken from us, as they’ve given us exactly what we need – time. There are days when there literally is hardly time to eat, let alone prepare and cook meals. There really are no words, except thank you. I can honestly say that this literally means the world to us and the appreciation can’t even be described in words.
It’s hard to believe we’ve been here for 20 days already. When I look ahead on the calendar it just seems never-ending. Days run into weeks here and half the time I don’t know whether I’m coming or going. Last night was my night to go over to the trailer and since Joren was spending the night at my Mom’s, I was able to get a little catch up on some sleep. I got over to the trailer just after 10 pm and by 10:30 I was fast asleep. I slept till close to 10 am and felt quite refreshed when I woke up. I think I had just been running on adrenaline. Tonight, I’m back at the hospital ready for a night of unexpected, but I get to be with my boy and that’s what’s most important!
I'm not able to find the amount of time needed for a more detailed blog as often as before, but I have been keeping up with Keian's facebook page - If you'd like more frequent updates throughout Keian's journey, you can join his group at - Kisses for Keian
I sit here and am reminded of a saying on one of K’s favourite shirts. “True, strong and free”. Keian is the strongest, bravest boy I will ever know and I am confident that with the power he has shown through all that has been thrown his way that he will be free. Free to be a boy. Free to live. The strength of this boy truly amazes me from day to day. The long days as the hospital are beginning to put a tole on Keian’s vibrancy. He’s lost a little bit of his sparkle, but I know it’s still there. I see a glimmer of it when he gives me a warm hug or smiles at me from across the room. Just like his Daddy, he’ll always be my shining star.
“Courage is contagious. When a brave man takes a stand, the spines of others are often stiffened”