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Instead of going home like we’d hoped, Clark had to be prepped for an immediate endoscopy and colonoscopy. This was a procedure that we had previously discussed, so agreeing to have it wasn’t a difficult decision to make. I was, however, hoping that we could have scheduled the procedure in advance instead of expediting the process. Having 3 kids that all need attention is very difficult when one is in the hospital.

Before the colonoscopy, Clark’s GI tract needed to be empty, so Clarkie had to stop eating (except for jello!). He also had to start a mild laxative called Miralax. This is a powder that the nurses mixed with apple juice. Over the next 2 days, Clark had 21 packs of Miralax with 5 litres of apple juice. He gulped down the first litre, but the next 4 litres were a challenge.

The procedure went well, but Clark’s large intestine, esophagus and stomach all looked fairly normal. There was a small patch of swelling in his stomach, and a few dead cells, but there were no signs of bleeding. This doesn’t mean that there isn’t bleeding in his intestines. It just means that the bleeding must be in his small intestine — an area that the scopes cannot reach.

We have discussed a capsule study with Clark’s team of doctors. This is a camera in a pill capsule that is approximately the size of a large vitamin pill, which most patients can swallow. The camera takes multiple pictures on the way down through the GI tract, and it saves the images to a device that Clark will wear around his waist. We will schedule this procedure for another time as there is a lot of prep work to be done first. Since Clark is too small to swallow a capsule that is so large, he will need another endoscopy​ to place the capsule past his stomach.

Clark had another ultrasound to check his liver and spleen. His spleen is slightly enlarged, but nothing to be concerned about; some people just have larger spleens.

Clark finally went home on Thursday night. He was just in time to enjoy two birthday parties over the weekend!

I thought Clark would be discharged from the hospital after his blood transfusion (and a little sleep) on Saturday morning, but the doctors had other plans. Clark’s hemoglobin was dropping faster than they felt comfortable with, so they wanted to do some extra tests. They drew blood to check for infection and other abnormalities. He gave a stool sample and a urine sample; they found microscopic amounts of blood in his stool, but his urine results came back entirely normal. They also gave Clark another ultrasound to check all his abdominal organs, particularly his spleen and liver. His spleen was slightly enlarged (possibly the reason for his drop in platelets), but it wasn’t large enough to be of concern. Everything else looked normal. Some additional blood and stool test results would take a few days to come back.

All in all, the day was quite boring and we still didn’t know why Clark was losing blood. 

From what I understand, there are two possible reasons for Clark’s blood loss. One possible reason is because of Clark’s bone marrow. Maybe it’s not producing enough blood; could this be Aplasitic Anemia again? Or could it maybe be a blood cancer, such as leukemia? Or is it something like myelofibrosis? The other possible reason is that Clark is losing blood. This can happen in his stool, his urine, or a hemorrhage. We needed to find out whether enough blood is being created, if it’s being destroyed, or if he’s losing it (through his GI tract).

We had the choice to go home or to wait one more day to see the GI specialist who would be doing her rounds the following morning. We decided to stick around, because the soonest GI appointment Clark could get was 3 weeks away. We needed some answers.

The rest of the day was filled with watching movies, colouring, and looking out the window to count cars and buses as they drove by.

Sunday finally rolled around, and we spoke with the GI doctor. Her opinion was that Clark has a GI bleed… somewhere. It could be a fissure or polyp, which are fairly easy to fix, or it could be something more complicated — maybe a vessel that is leaking. The possibilities sound endless, and I am still trying to understand them. The doctor was playing this off as something typical for a 4-year-old, with an easy fix, but we know Clark isn’t typical. So far, there haven’t been any easy fixes along his journey. We agreed that Clark would need an endoscopy and colonoscopy to check his GI tract for any bleeding. We will have to schedule this procedure for Clark. 

In the meantime, she wanted an abdominal X-ray to check for constipation. Apparently, this is a “normal” reason for a 4-year-old to have blood in his stool. However, since Clark has no symptoms of constipation and X-rays expose Clark to unnecessary radiation, Patrick and I vetoed that option. Another idea was to give Clark a Meckel’s scan. This would check his large bowel for any abnormalities, such as obvious bleeding or inflammation. The Meckel’s scan uses a radioactive dye; we also vetoed this option. The endoscopy and colonoscopy would give the doctors a better visual without the radiation, so we decided to wait for that. As for immediately, we could finally go home. 

Our short-term plan is to schedule Clark’s procedures and have weekly blood tests to watch his hemoglobin level. Clark’s hematologist thinks that bi-monthly CBCs should be sufficient. I hope he’s right. However, since I have the lab orders, I’m planning to take Clark weekly for his CBCs until results prove that twice a month is enough.

There is an odd satisfaction in getting CBC labs drawn, which is done just to see that everything is normal — or at least on a trend towards normal. This trend towards normal has generally been the case for Clark since his BMT. 

Since Clark’s initial eye surgery in December, he has had 4 more. One in January, March, April and June. Clark would not let the doctor look at his eyes during a regular appointment. In fact, Clark shut his eyes as tight as he could, and hid his head. Part of me was frustrated because Dr. Moore just wanted to see whether the bleeding had disappeared or not. But part of me was completely understanding, and sad for Clark. What 3 year old wants to be held down with a bright light shining in their face? Especially a 3 year old with light sensitivity?

After discussing with the doctor, we chose to put Clark under anesthesia again for a better look (January’s surgery). This would also give access to more lasering if necessary. As it turns out, Clark still had a little pooling of blood in his right eye (his “good” eye). It was much less than before. Dr. Moore could also see more open vessels where the blood had dried up, so he was able to laser a bit more.

This situation repeated for March, April and June’s surgeries. After Clark’s last surgery in June, we agreed to give it a break. Dr. Moore was fairly certain he had lasered everything necessary. And even though we couldn’t be 100% sure without putting Clark under again (or a forced eye exam), we decided to give Clark some extra time to get used to the idea of having the ophthalmologist take a closer look. Ophthalmology wants regular visits every 3 months, so we want Clark to enjoy his appointments…or at least, not be scared. There never seems to be an easy decision when it comes to my baby’s health, but we do the best we can under the circumstances. Thankfully we have a lot of faith in Dr. Moore. He is a specialist from London, and continues to actively seek out cases like Clark. Even other patients with DKC that have major eye complications tend to be different from Clark. Having a rare disease can be very complicated because it is so rare, that every patients problems and outcomes can differ.