Half way.

A couple of long days, but not too stressful. I am super grateful for the new peds radiologist. He's been really great about working with me, listening to my concerns and the radiation techs- who have known us for years, have been wonderful.

Lily's day started out fasting- since they try to get good images of her belly and that's where the adrenal tumor would likely grow back- it's better to not have a lot of extras in there. We all know how much Lily loves food(what's not to love?) it is a minor challenge. We all tend to get Hangry - so we sat down and went through old baby pictures to distract her. Of course as we sit there, she's sniffling, coughing and says her throat hurts. So just like her mama- she gets sick for scans. Which other than worrying about the breathing and coughing- what do you want to do when you feel sick- lay around and sleep. Not in a cold, hard, loud, tube- but we take what we can get. As we looked through pictures, I found the one that always sticks out in my mind. This is one of those pictures that always makes me think- wow, was that big old adrenal tumor already there?

But we can't wallow or participate in shoulda coulda wouldas. We learn and go forward. Which is why we scan. There is a lot of anxiety surrounding scans and one of the reasons many clinics won't do it- they feel it causes more stress than benefit. I think it is an individual thing- like anything. This is one of those times genetic counselors and a good support staff is instrumental- they help people decide what is right for them in this area. Some find the scans too stressful and  pay attention to symptoms and have things immediately checked out. Since we have been doing this cancer drill awhile- and over many generations- there is some merit to both. Ideally the routine that works with the person's needs and coverage- is ideal. I didn't scan for a lot of years. It was too stressful, but over time I have seen first hand how catching tumors early has definitely advantages in survival. There are still so many unknowns, but I want the best chance for my kids. There will be tumors due to type and location that really not much can be done without damaging quality of life. Those decisions suck. I have one of those decisions in my head. You make those calls at the time you have to with the information you have. 

We get to MRI around 10:30. We fill out the papers since they last a year and it's been a year. I don't think I've never not filled out the papers- but its one of those things- it's almost automatic. I read the questions out loud so the kids can answer. The are you currently pregnant question usually gets fun responses. 

The tech hands Lily her scrubs and takes the movie Lily brought to watch in the groovy MRI goggles. She changes and we go over the plan. There's a lot to scan. She has a dedicated brain and abdomen as well as the full body for LFS screening. They try to minimize the time as much as possible but really want good images- so we know it's gonna be a long day. She said in between each set she will give Lily the opportunity to get up and walk around. I know this adds on to the overall time, there are coils and gear that has to be taken off and reset each time she moves- but I appreciate them taking good care of her. 

off to the races. 

The goggles before they put them on- with headphones, under the head "cage"

Overall, Lily is in the scanner about 4 hours. The peds radiologist comes and talks to me after the first round, it all looks good so far and then each subsequent round. We talk a bit about LFS and things I've noticed with Lily and through others' experiences just to help him understand my concerns. He has a 10 year old and it shows, he is great with Lily and great with me. I appreciate the extra time and care. Most MRI facilities are really busy, Tripler is exceptionally so(lots of active people and dependents) and they are down 1 machine. They brought in a portable out in the parking lot- so patients periodically come in, change and head out back. It reminds me of my very first MRI when I was 15- in the parking lot of the hospital. 

Lily comes out a few times- they had to run a couple sequences over- which in MRI world means starting over. The cold is definitely a factor and I feel bad for her- but she is doing well. We walk up and down the hall and I rub her back. Then she gets a bit of a reprieve- the system has to reboot and so she plays on her iPad for a bit. As she goes back in, the doc comes and we talk about her arm. We've been watching a spot for years in her humerus. We kinda forget about it in between scans and then it's like ripping a scab off- oh I forgot about that. This is one of the gray areas. You find things that could be normal weirdisms you'd never know about- or it could be the beginning of something. In LFS we tend to err on the side of it could be something and out is better than in. But that works well for superficial lumps and bumps- once you get deeper- you have to start weighing benefits and risks of digging around. He would like an Xray to check. I used to freak out about X-rays- but I know that it will give him different information than the MRI and it is better to see bones with.  I ask- if it doesn't really show anything are we going to come back and look more with MRI and should we do a more dedicated MRI since it has grown a couple millimeters and she is in there and we still need to look at her arms? And this might be the point he starts wondering what he got himself into with us. So I explain- we grow weird. That certain cancers seem to pop up at certain ages in LFS. On a normal person I would be ok saying"it's a cyst" and maybe monitoring it- but in an LFS kiddo with a history of 2 cancers already- I would be more comfortable with more information especially if we need to decide to biopsy or remove it. I explain how the sarcoma in her leg and my arm really never concerned the docs and it was at my insistence they were removed. It happens a lot in our group of mutants. And with hormone changes and this age- I need to know more. I want her oncologist to have more information. He orders the dedicated MRI. The tech tells me she saw the Mallory's were on the schedule and took leave for the rest of the week. I joke she should know- Lily's not the easy one- she shoulda taken Bella or Kiera. 

Lily is done just in time for her hearing aid appointment. Which luckily is just down the hall. We enjoy a little Chopped while we wait for the audiologist. She's getting her new streamer so she can pair her hearing aids to blue tooth and use them as headphones. It's actually pretty cool and she is stoked. 

rocking out to Katy Perry. Roar.

We head back to radiology so we can look at the images with the doc and squeak into the Xray. It's now after 5 so the hospital is quiet. I like this time in the hospital. And I know traffic is a bear- so no rush to sit in it. I feed Lily a pop-tart from the vending machine because I know she's starving. The spot in her arm is bigger than I like. Definitely want to discuss this with her onc. She is fascinated by her insides. Her left adrenal looks good, a couple other areas I was concerned about look good. I feel positive overall. We head over to Xray. 

The tech wants to know which part hurts. I tell him they saw a spot on MRi and we are cancer screening. His bedside manner instantly is more genial. We finally are done for the day. I read half a book, my head isn't splitting, I've managed stress and lily did exceptional. I thank her for doing this and she gets to pick dinner. 

Chili's- Root Beer and games

We get home and pretty much crash. I had been patting myself on the back for how well I handled it-and that I was feeling pretty decent and then the exhaustion hit. I woke up Thursday feeling pretty awful. The debate- do I go back to bed or get on with the day? I went for a walk and called Monica for a mini mom melt down. I wish she was next door still- but telephone works. She reassures me that I'm allowed to be exhausted and tired and it will be fine. Sometimes you just need to hear it. I take it easy as possible until afternoon activities. We take Phillip to work out, Kiera to voice lessons, a quick stop at Walmart for necessities and a movie for Bella in the scanner- she's a huge Divergent fan and the Allegiant was out on DVD. We pick Phillip up- drop him and Kiera off- they will take Lily over to Aunt Theresa's for dinner and Bella and I are off to Tripler. 

1st non sedated solo MRI- rocked it!

Bella is milking the hunger thing- and suffers from my nervous bladder. I think we stop at every bathroom. We fill out her forms, change her into scrubs and she and Ducky are ready to go. Ducky gets a quick check in the metal detector and is approved to ride along for the MRI. 

Bella and Ducky- a special stuffed comfort made by her friend Sophia. 

I like the quiet of evening MRIs. Except for the construction and the noxious chemical smells that are coming from down the hall. Fortunately they only work until 6 and it fades when they close the door. The tech pokes her head out and says Bella is doing amazing. She even passed up the first break.

Bella and Ducky

 She comes out a couple times after that and we walk down the hall and get a drink. She is so much more relaxed. I'm glad it wasn't as bad as she feared. She wants to see outside, which I find fascinating. We walk down the hall and I warn her it's dark out- so we can't see much. Overall she was pretty quick- less than 2 hours in the scanner. She is the shortest one- so that helps. Phillip is gonna take AWHILE. She picks Taco Bell for Dinner so we make a run for the Border. We chase that with a McDonald's ice cream cone. I thank her for going through it. I know it's not normal, easy or fun and I appreciate it. I'm impressed- I knew she could do it- I'm glad she did so well. 

Proud of this Kid!

Tonight is Phillip and tomorrow morning Kiera. Phil has Phillip duty- which after an overnight alert shift last night means he'll probably get a good nap in the waiting room. 

I don't expect to hear about the kids results right away- hoping maybe to catch up with the radiologist on Saturday. I'll give him time to make the formal reports and call the oncologist next week. Thank you for keeping us in your thoughts, I definitely appreciate it.

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.