The Quiet Before the Storm

I'm hoping there will be no storm. Really really really hoping.

I've gotten a couple concerned messages and calls because I've been quiet. It hasn't been quiet here, so I guess I lost track. So I wanted to post a quick note. Part of it is I feel like I am surrounded by people who are all fighting their own battles and I don't want to add to their stress and part of it is I don't feel like a very good friend right now to anyone. Which bothers me a lot. I do appreciate vacation posts on Facebook and celebrating all the fun normal many of my friends are experiencing this summer virtually and my heart is aching along with many who are going through tough things. I wish I could do more.

Tomorrow- Monday is my PET/CT scan. yaaaaaaay. It's either good or bad- I can't predict it so I won't. My mom asked how I was feeling- and other than this cold I've acquired- most likely due to the stress and MRi last Friday- I can't say I have any major flags. All my concerns could be old age, weight related, or cancer. I already know I'm old in LFS years, I am overweight and I have cancer, so the bases are covered.  I feel pretty good. I miss normal. I miss waking up and not wondering if this is a normal ache or something ominous. But I also know I have it pretty good and I would like to keep it as stable as possible.

The kids are doing well and we had a few physical and emotional hurdles to overcome this past week. They tend to sense my mood and I have definitely been in a funk.  We had a wonderful 4th of July in town. I was worried Lily and I would both be extremely saddle sore, but we were good. For Christmas, she wanted a horseback ride. Timing between treatment and life has been difficult. Nothing like scanxiety to inspire me to get stuff done and this was top on the list. It was truly a great experience- back in the woods of the North Shore, there were moments I felt like I was back in Colorado and moments my hips hurt so bad I wondered if it would be frowned upon for me to get off and walk- but I was pretty sure I would break something on my dismount so I kept stretching my legs as much as possible on the giant beast named Rascal that was tasked with my baggage and liked to walk into trees. Lily's horse Jewel, which she spelled Joule(tickled me to no end- a measurement of energy as this horse was very easy going) was a perfect foil to her personality. Laid back and stopped every 5 feet to nibble. Lily asked if this was what it was like taking her anywhere. I laughed.

On the way to the horseback ride we stopped off at the favorite beach of one of our little friends who cancer took from us. We remembered Ryan who we didn't really even get to know because of cancer. It was also the 4th anniversary of our clinic friend Abriana's death.  I remember the year, because I found out she passed when we were in Colorado for the 4th of July after my surgeries. She was an amazing little fighter, much like our friend Haley who also died the first week in July 2 years ago. I think back to Lily's Chemo independence Day party 7 years ago and how I knew we were never going to be independent of Cancer but that we needed to celebrate. We need hope. I never wanted to imagine a world without Lily, although as a cancer mom, you try to prepare yourself. So when I think of Anita, and Amber and Wendy and how much they miss their babies- I know I can't even fathom how much their hearts hurt, but I can remember their wonderful children. Just like we remember Bob and Eric. Grief is just heavier some days and you carry it. And it is cumulative.  It was much heavier this past week. So it was a good time to make some memories.

After my MRI- the technician talked to me about the kids' scans coming up this week and that there were some sequences added and they would be longer. They typically take 2-3 hours- which although not fun, is manageable. We are now looking at 4-5 hours. This is the first year Bella is trying non-sedated. Sooo, I've spent some time this week and weekend trying to touch base with our radiologists and some of the LFS experts to try and see if we can phenangle a more efficient routine.

I know it can be done, it has been done at other institutions. It's just a matter of connecting our team with the people who have already done the legwork. Times like these I am grateful for military healthcare- the specialized care and their willingness to work with our rareness is impressive. I know so many mutants who fight and fight and fight to get coverage and screening. I feel bad complaining that our screening is too long- but that is part of the reason many can't get screened- that much time equates to $$ and without a protocol- many radiologists are hesitant to stray off the standard path. I am grateful I chose biology as my major and can understand a lot of this going in. Sometimes it's a curse, but overall my college education has paid so many invisible yet tangible emotional dividends.

I think that's one of those things that you don't understand about cancer and LFS until you live it.  The need to research, the need to find out information and the amount of time spent advocating for yourself or your kid on a daily basis. For care, for school, for work, in general and then to put on the smile and try to be normal. Because at the end of the scan - this normal could be flipped and although you have to prepare for it, you can't so you have to keep busy and hope for the best.  So we have a storm of scans this week. I'm trying to harness the quiet in thoughtful preparation and visualizing good results.

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!