Courage, Brave Lion

Sorry it has been such a long while. It really is amazing how routine and activities get in the way of the littlest things! We had a busy end to the summer. Charlie’s creatinine shot up to 99, he was given a treatment of high doses of prednisolone which brought it down a little to mid-60s. Unfortunately though, it has continued to creep up so we are back to mid-90s and waiting to find out what the next steps are. You would never know his levels are off. He runs around like mad, is doing well in school, eats, has been drinking his water...so we shall see how this plays out. Again, we have tremendous support and we are so grateful. I hope the doctors and nurses who work so tirelessly on cases like Charlie’s know how grateful we are and how lucky we feel knowing we are in good hands. The best hands.

Things are going along...Charlie’s sodium is very low and he has been eating a lot of salty foods this week. It has worked and his level improved! His creatinine is still hovering around 72, but everything else is good. He was able to decrease another medication and eliminate one (which was one he had to take 4 times daily, so it feels like we have all this time on our hands now! 😂). Overall, he is doing well. Each week is an adventure! Each hospital visit is new information. Charlie is looking forward to school starting - he is anxious to see some friends. I am nervous about it. Nervous that he won’t drink enough water at school, nervous that he will get sick, nervous he will get hit in the stomach or bump into something. I need to get over that. One day at a time! XO

We were told the results of Charlie’s biopsy today and everything is good! No signs of any rejection. We are so relieved. His creatinine is down again from 59 to 55 so again, relieved. Charlie miraculously finished his 2.5 litres of water by 6:30pm, so we were so happy. It just makes life easier when it’s done earlier in the day/evening. Now we are home. Henry is in Winnipeg. Matt is watching TV downstairs. Violet is asleep and Charlie and I are watching ‘American Ninja Warrior’. Charlie wants to compete in it someday. You know what? I think he will do it. Nothing surprises me anymore about our boy. 🦁❤️

Waking up from sedation after the biopsy. ‘Mummy! I just realized something! When I go back to my room, I can put on pants!’ 😂 ummm…ok? He was so funny and chatty! He had two freezies.

Happy Canada Day everyone! Today marks just over 2 months since Charlie’s transplant surgery! Wow! Yesterday, we went for bloodwork and his creatinine was 70, which is incredibly high. He increased his TFI (Total Fluid Intake - aka Water he has to drink) to 2.5 litres. He accomplished it and when we went back today, his creatinine came down to 59. So, we will see what it is on Tuesday after a few days of the increase. On the flip-side, because of his increase, his sodium level is quite low. He gets to have chips today! Hopefully that will bring it up a little. With the heat at 47 with the humidex, that is not helping his sodium either. His white blood cell count (neutrophils) is very, very low. He is at his most susceptible to infection at the moment. This is due to all of the medications he takes. It is a fine balance. There may be some changes next week, but we will see what happens. For today though, we are happy to be home and to live in a country that values universal health care! ❤️ 🍁

Today has been challenging. We have been here (SickKids) early all of this week and it has been long days. Charlie is not a happy camper. He is tired, grouchy and annoyed that he is here at the hospital. He has been fighting me on everything, complaining about everything and generally just upset. He is 6, and I am trying to remain patient given everything he has to go through. At one point today, I had to go for a walk and get a coffee and clear my head. As I was walking, I saw a woman (a parent) talking with someone quietly in a corner, and they were both crying. No, sobbing. I realized, as I often do when I am here, we are very fortunate. I could be that person today...sad that there is something going on that is out of my control. I advise anyone having a bad day, or just ‘a day’ to spend an hour walking the halls of this miracle of a building. You will understand and be grateful. The biopsy is done, we will get to go home tonight and hug the rest of ‘Team Dunn’. Charlie will be happy again. 💜

Waiting to go in for biopsy!

The best laid plans... 😕 Charlie was supposed to have a biopsy today, however his creatinine was up on Monday to 63. Today we went to the hospital expecting to have our usual clinic visits and to stay overnight. After a busy day (bloodwork, clinic, ultrasound, x-ray, various consultations), we were able to go home for the night. His creatinine is back to 56. The biopsy is now tomorrow (Wednesday) morning at 9am, however the central line won’t be coming out for a little while. Charlie is really hoping he doesn’t have to stay overnight on Wednesday...It has been a challenging week. Charlie is supposed to drink 2L of water everyday. He has been doing it, but it is a constant battle of wills to get him to actually do it. Then the hiccup with his creatinine. They (renal transplant team) are concerned that it is a rejection episode. This is quite normal and doesn’t mean full rejection of the new organ. One of Charlie’s doctors explained it very well today. She said ‘Imagine that the organ is not recognized by the body and the body is wondering what is happening so it sends soldiers to fight it. Essentially what we want to do is put these soldiers to sleep. Occasionally, a few of them wake up and we have to treat it and get them back to sleep through medication changes, etc.’. Makes sense, right? Anyway, he seems alright....not super happy about the water or all of the meds or staying overnight at the hospital, but generally, for a 6-year old...he is a champ. Here’s hoping we can come home tomorrow after the procedure. 🦁

I am sorry that it has been so long since the last post! It has been a busy few weeks. Charlie is doing well and although his creatinine level is up slightly (varies between 54 and 57), his levels are good and all within range. He is still doing his medicine like a champ, but he is quickly growing tired of our early morning road trips to SickKids. He has also been quite car sick en route to the hospital, so that hasn’t helped. His biopsy and central line removal has been scheduled for Tuesday. This should be his third and final surgery for now! Exciting! He is so happy that the line is coming out and he will be able to have a shower or a bath, and play a little more freely. My recovery is going well! The only thing I am noticing is how tired I get, but generally all is well. Will post more on Tuesday about the surgery! ❤️

First - today is Henry’s 9th Birthday! So weird how quickly time passes. He is growing up to be such an amazing boy. Here we are 5.5 weeks out and life is carrying on. Our new normal. Charlie will keep his central line and wait on the biopsy for a little while. There are some little pockets collecting fluid that have formed (happens regularly after transplant) and they don’t want anything to happen to them during the biopsy. Charlie will have another ultrasound next Tuesday and they will decide if they would like to continue to hold off or not. We did a photo shoot for the SickKids foundation last Monday - it was fun! Charlie did so well! His photos will be used in brochures and advertising, as well as for the SickKidsVs campaign to support fundraising for the new building! So happy to be a part of this initiative! ❤️

Successful surgery calls for a celebration dance!

Just prior to surgery today! Charlie was a champ, as always!

Well, technically it is for us! Charlie is doing well and he doesn’t have to go back to SickKids until Tuesday, which makes it feel like we actually have a long weekend! Charlie is feeling great. He has a lot of energy and, although he can play a little at the park and go for walks, he still needs to take it easy. We are trying to keep him busy. Henry has been great and they are really enjoying all of our new board games. Violet has been watching and is a little left out sometimes, but we are working on that. She doesn’t play the same way yet, but that will change. Looking forward to sitting outside with some coffee in a minute. Feeling great today! As always, thank you for the support and love! xo