Thursday, June 30, 2016

Summer Break LFS style

Part of our summer routine is scans. With Li-Fraumeni Syndrome, we try to catch cancer early with the hope that we can treat it. Ultimately we hope to find nothing. We try to stay optimistic- we know lots of people who have LFS who don't have cancer or have had really good success catching tumors early. There is a certain amount of stress associated with this looming cloud- we call it scanxiety. It is real. It is vicious and no matter how much you tell yourself not to worry- you do. I get a little manic- trying to get things in order- just in case. Nothing goes wrong if everything is in order, right? Not exactly, but your mind plays these games because we are human and we have feelings and a need to preserve our future.

Before we can get the scans ordered, we need to have an annual visit with the kids' oncologist for the general clinical exam and talk about any concerns. There are a couple this year, but one of the good things about these appointments is that the docs are reassuring- most concerns fall along the "normal" kinda kid development curve but my concerns give them an opportunity to order more or less tests to rule out problems. The kids know the way to the clinic. Phillip and Lily are followed more closely because of his diabetes and her history of cancer. Unfortunately with LFS, once you have had a cancer, the chances of another one developing are much higher. Lily's already had 2. Sometimes we forget about the sarcoma in her leg because it was a lesser threat at the time.

 They line up for weigh in. A good math exercise- converting Kilograms to pounds.  I try to pay attention since I know I will need this information when we schedule MRIs. But my memory is a bit suspect these days.
 Then we pile into the treatment room for vitals. Our nurse was a saint and helped us out by managing to get all 4 kids seen at the same time. I appreciate this a lot.
 After vitals we wait in the oncology waiting room while the kids are seen in pairs. They meet with our oncologist, who will be leaving soon. I am very sad, she's been with Lily since the beginning of this journey. 2 residents also sit in. Tripler is a teaching hospital, but I also like to expose as many young doctors to our weirdness as we can. Some days I'm not in the mood- but I know how important it might be for someone else down the road just to hear- sure I've seen LFS before.
 Lily practices taking Phillip's blood. I warned them we will have to do bloodwork and a poke is involved. My kids all have my tough veins. Sorry about that munchkins.
 We LOVE special visitors like Lili the dog. This helps settle the nerves and pass the time. We talk about our other furry friends Bailey and Indy. We visit with our favorite nurses and child life specialists and docs. We miss them but also kinda grateful our visits are infrequent.
 Lily gets a bonus urinalysis this round. Love that she's old enough to handle this like a champ. Hate that she has to and that she mentions that this is one of the easier tasks. Some families do ultrasounds and other exams for their checks and get blood done every 3-4 months. After careful consideration with our docs, we agree with all our other visits and since we aren't actively monitoring problems- annual visits are good for now. It is a balance.
 Time for bloodwork. A quick poke by the lab specialists- they are the best- I've really never had a problem in the Tripler lab. I know this is stressful for the kids. It's easier afterwards when they all say it was easier than they thought it would be. Lily still has some pretty bad memories of bad poke experiences and a bit of PTSD but other than a stress tear that leaked out she breathed through the process and lived to tell about it.
 7 tubes for each kid. They look at the blood counts, adrenal hormones, and other possible markers of cancers.
Who gets a bonus 5 tubes drawn- this kid! Grand total- 33 tubes of blood from the kiddos.

 The car ride home is a good chance for nap time. I am glad we can take these steps, even if it is stressful. As they get older, it will be part of their routine and they will have the experience and tools to make the best decisions they can for their health. I would love to protect them from all the bad stuff, but some of it is just unavoidable. The best we can do is hope for some good breaks and deal with what we have to. Really it's true for everyone. Until then we have fun and try to do normal fun summer things!

Next week I have treatment and my Brain MRI- really hoping things are stable. The following week I have my PET scan and the kids each have their full body MRIs on different days. Each one will take about 3-4 hours. It will be a long week but hopefully will give us some peace of mind. We will take all boring and clear thoughts we can get!

1 comment:

  1. I relate to "everything in order, nothing goes wrong". That's what keeps you moving forward. Love your whole family though never met. : )


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)