A Bean’s Life

Summer is slipping through my fingers as it always does in Canada. Winter is eternal and the short weeks of summer fly past before you’ve got a chance to breathe. I have not been blogging much of late because we’ve been out enjoying the ridiculously hot weather we’ve been having, and spending a lot of time at Bubby and Da’s cottage in Muskoka.

There have been a few changes of late in Gavin’s medical status, which those who follow his story or are going through treatment with their little ones would be interested to know.

Today we had some good news. This morning I took Gavin to the nephrology (kidneys) clinic at Sick Kids. It was our first time in clinic, but we have had someone “following” Gav’s kidney situation basically since he was born. Firstly, because of an unrelated issue spotted in the womb, and then because the chemotherapy protocol Gav was prescribed was harsh enough to seriously impact kidney function. Gav’s kidneys work at a lower level than that of most children his age, but we have at least seen some improvement since his discharge in January. (This has been determined through GFRs done in nuclear medicine.)

Of course, Gavin has had high blood pressure since November of 2010. This on its own is detrimental to the kidneys and is one of the leading causes of kidney disease. Initially, when his blood pressure first shot through the roof, Bean was on a cocktail of drugs to control it. Over time, as he came off of the high doses of steroids needed to deal with his lung issues, we removed these meds one at a time. For the last several months, he has been on just one hypertensive drug, Amlodipine. Today, the doctor informed us that we can lower Gavin’s dose of Amlodipine, as his blood pressure has been stable for the last long while. If all goes well, as of next week, we can take him off of it altogether. Just removing another med from the daily roster would be a huge step. Nephrology did not feel that another GFR would be helpful at the moment and we will do a renal ultrasound in several months just to make sure there is nothing wrong.

We still have a way to go before Gavin is med-free. He is supposed to be taking Tamoxifen and Accutane as his maintenance regime until April 2012. He takes the Tamox twice daily crushed into a bit of yogurt without complaint. For two weeks, fortnightly, he must also swallow a gel-capsule of Accutane twice daily, and this he has again proven himself to be a champ in doing. Accutane is not without its very visible side-effects though. After the first week, his skin dries up, his lips crack and bleed in the corners, and his eyes become very dry and red. Most of the skin on his body is rashy-looking and itchy. We spend a lot of time moisturizing. It takes one week off for the effects to die down, and then he has a week of relative good health before he’s back on it. It also makes him photosensitive, which means constant applications of sunscreen. We are wondering if it makes him irritable as well. And these are only the effects we can see. It is a harsh drug and taxes the liver too.  However, it’s all we’ve got at the moment, so we’ll soldier on.

Gavin’s height measurement was taken officially today, and I was so pleased to find that he has grown a bit. It is very hard to measure Bean’s height accurately, especially when he scrunches his neck down because he doesn’t like the board touching his head. I have had wild variations in his height measurements at various clinics in the hospital, and can only shrug my shoulders. Today, though, he stood up straight and tall and measured a good 94.4 cm (about 37.25 inches). That puts him just below the 50th percentile for his age. It also means that in the time since diagnosis, he has still grown about 10 cm or 4 inches. That is truly amazing, considering all that he has been through. I know of many children who have gone through treatment and not grown at all from the time they were diagnosed.

Lately, I have been thinking a lot about the future. One of the things that has always disturbed me was the thought that Gavin might not grow naturally. This is true for many children who have been through bone marrow transplant. Eventually, they are given growth hormone to help them along. This has been a sad, blue thought in the back of my mind since we first learned of the terrifying side-effects that Bean could experience. I do not know if Gavin was destined to be tall – my people are fairly long but Craig’s family do not exactly tower, so he had a 50/50 chance there. But. I am happy for him to be in the middle. 50th percentile is totally and completely fine by me. I hadn’t realized that Bean had sprouted some more and it was a wonderful discovery. As always, the future is unknown, but the present is sweet!

Craig and I have also been debating about whether we have seen some improvement in Gavin’s swallow. He is now able to eat almost anything. (Depends on whether or not he will eat it.) He can crunch down rice crackers but gags on scrambled eggs. We have continued to thicken his drinks and have been working on thinner liquids by spoon. We will not officially evaluate again for quite some time but we are happy to see that something seems to be changing.

Little Bean also seems to be back on track physically. At least, he is back to where he was pre shunt revision. He is starting to run a bit again and his movements are a little more fluid than before. He still has a long way to go to catch up to his peers, but I have signed him up for gymnastics again in the fall and also a Sport Play class. I have also decided to put him in private physio classes. We are seen infrequently at the rehab centre, (every six weeks) and that is simply not cutting it for him. He will benefit a lot from weekly sessions for awhile.

As every day of this summer swoops away, I am reminded over and over how lucky I am to have my Gavin. There are days when he drives me mental and frustrates me to the point of screaming, but there are days like today when we danced around together in fits of laughter while waiting to see the doctor. Quiet moments when he puts his arms around my neck and gives me a huge kiss and says, I love you, Mama. At the hospital today, a little girl was selling bracelets she had made to raise money for brain tumour research, in honour of her older brother, not quite 14, who lost the fight recently. Her mother and I exchanged brief words and a tear-filled look as Gavin and I chose bracelets to give to Bubby and Auntie. Yes. I know I how lucky I am.

This entry was posted on Friday, July 29th, 2011 at 12:14 AM and is filed under Kidney Function, Maintenance, Medications, Swallow Difficulty. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.