Swallowing Pills and Make A Wish

Brynlee was scheduled to start her Accutane cycle #4 on Wednesday, but we ran into a little bit of trouble getting the prescription, so she didn't start until Friday. Isoretinoin (which is the generic name of Accutane) causes horrible birth defects, so anyone that takes it, girls especially, have to go through all sorts of hurdles to get it. They have a program called ipledge, and to keep a long story short, we hate ipledge. We understand the importance of it, but for our situation, especially where our daughter is nowhere near her child-bearing years, it is a pain. 

 

Anyway, Brynlee didn't gain any weight these past three months, so the doctors wanted to try to prescribe her a different brand name of the isoretinoin than we had been using in case the one she had been on was causing her nausea and making her not want to eat. We were using Amnesteem brand, and these came in a gel capsule that we would just poke a hole in and squeeze out a paste-like substance into her applesauce and feed to her. The brand that we got this time is called Claravis, and it comes in a harder plastic-type of capsule, so we thought it had powder inside. I don't know why I assumed it was powder inside, but it just looked like one of those kinds of pills. Well, to my surprise when I cut a hole in the end out sprayed a liquid all over. Luckily for us, we get 30 pills for each cycle, and we only need 28, so we have a couple of extra just in case. So then I tried poking a hole into the capsule to extract it like we had before. This didn't work either as it was a liquid and not a paste, and it was also nearly impossible to get out of the capsule and I managed to get it all over my hands somehow.

 

I called into clinic and explained that I was having trouble with this brand of isoretinoin and wondered what we could do. Basically I was told there was nothing that we could do except to keep trying, and the PA who works with the ipledge program and getting the prescriptions filled told me "Oh well" when I said I was worried she wasn't getting enough of the medicine by trying to extract it out of the capsule. It's a little bit frustrating knowing that your child is supposed to be getting a certain dose of medicine to help her cancer not to grow and knowing that she isn't getting it. 

 

So by Saturday night I realized that we were basically down to the point where in order to give this isoretinoin the chance to do what it is supposed to do for Brynlee's cancer that we have to get her to swallow these pills in order to make sure she is getting the therapeutic dose that she needs. I told Brynlee that she needed to take her applesauce medicine and that she needed to swallow the pill. She agreed, and I put the pill in her applesauce and stuck it in her mouth and told her to swallow. She gagged and spit it out the first time, so we tried again and offered her a sippy cup to help her swallow. It took her a few seconds of gagging (these are not small pills by the way), but she swallowed it! I cheered and gave her loves and rewarded her with some Skittles. Bribery! It's all about bribery! So this morning it was time to try again. I told her she needed to swallow the pill in her applesauce, and she told me no. I talked to her for a minute and told her if she swallowed her pill she could have Skittles again. She said ok, and so we tried. She gagged and spit out the pill two times, but finally on the third time when I stuck the sippy cup up to her mouth to get her to try and drink, she swallowed it.

 

I realize it has only been two pills, but I am hoping that she can continue to keep taking her pills and getting that medicine in her body. I know that there are lots of 2-year-old cancer patients swallowing a lot more than 2 pills a day, but Brynlee constantly amazes me with her understanding. She often seems so wise beyond her years. Don't get me wrong, we still have many, many 2-year-old moments, but I will take all of these little victories that we can get.

In other exciting news, since Brynlee is now officially 2-1/2 years old and on active treatment for a life-threatening illness she now qualifies for Make A Wish. Our social worker referred us to the program, and we received a letter a week or so ago stating she qualified to make her wish. They called us the other day to get some more information about Brynlee and our family. They will assign us two wish granters, and we will be heading to their facility in the next few weeks for Brynlee to make her official wish. Then after the wish is approved and all ready we will have a celebration when her wish is granted. Should be exciting!