What a month! Scans and such!

Who knew that you could pack in so much fun in just a few weeks and do it all while missing one important family member?

 

This summer Brynlee's Dad has been working a lot, so our summer hadn't been very much fun. About a month ago, he was sent to Italy to work for 3-1/2 weeks. Coincidentally the last 3-1/2 weeks have been our busiest and most fun, but we really missed having him here. We made two trips to Idaho, had a lot of HopeKids activities, spent time with family who visited us, went to the aquarium, Scheel's, Cowabunga Bay, a Royal Ball, and the list goes on. And, the best part was that other than a random physical therapy appointment, we did not have any doctor appointments. What could be better? Well, maybe having Daddy there with us and maybe me getting to go to Italy... 

 

Before he left, we got in a game of bowling with Brynlee's wheelchair. It was so much fun for Brynlee to be able to wheel herself up to the ramp and push the ball. She loved it and had so much fun. Those moments of seeing Brynlee somewhat independent are very satisfying and enjoyable.

 

**Picture disclaimer - up until about 3 days ago, my camera was missing, so all of these pictures are with my cell phone and aren't the best. Apparently there is a learning curve for cell phone pictures.**

 

At the end of July, we were able to spend an evening at Cowabunga Bay with HopeKids. Last year, Brynlee just sat in the shallow water and didn't do much. This year, I put a life jacket on her and we floated around the lazy river too many times to count. Thankfully, my niece was able to come stay with me to help me with the girls since both of my hands are required to help Brynlee, and overall, I think we all had a good time. 

The first Saturday in August we attended the HopeKids Wasatch Adventure Walk/5K. This event helps raise money for HopeKids to help provide all of these fun activities for families like ours who have a child with a life-threatening illness. The walk itself is a lot of fun, and we were lucky to have Brynlee's grandparents as well as my brother and his family with us that day. They had inflatables, games, prizes, food samples, etc. We had a good time.  

The girls (except Brynlee) all got their faces painted. The older ones were bribed into doing it, and they probably aren't happy I am posting this picture.


We also had the opportunity to attend a family night at a local church with HopeKids where we were fed dinner, played games, had faces painted, and watched a magic show. Brynlee loved seeing the bunny at the end of the show. It was a black bunny, so it is kind of hard to see, but she was thrilled to pet that bunny.

 



We also had the opportunity to attend the HopeKids Royal Ball that was held at the Castle reception center. The girls had a lot of fun, especially Brynlee. She absolutely loved meeting each of the princesses that were there. We met Sleeping Beauty, Belle, Cinderella, Snow White, Tiana, Mulan, Rapunzel, the Fairy Godmother, the Wicked Stepsisters, and ABC 4's Kim Fischer. Brynlee blew kisses and gave a hug to each princess. We all had such a great time. We may have even been interviewed by a local news station, and we may have even had a picture on the Deseret News website. So many smiles that night.

 

Brynlee's Dad made it back home from Italy this past week just in time for her 3-month scans. We were so lucky this time in that we only had to do an MRI scan. Only one day of scans??? I didn't know what to think of that other than to be extremely happy that we only had to endure one day.

 



Brynlee was such a trooper for this scan. She had to have an IV placed since she no longer has her Broviac line, and she was so good. In fact, she didn't cry at all until we were up in clinic meeting with the doctors, and she was clearly tired at that point. I realize that she cannot feel in her feet like the rest of us, so it is probably not very painful for her to get an IV in her foot, but it is still scary to have all of these people hovering over you to administer an IV and draw blood. She didn't even flinch. She was also a slow bleeder and so it took longer than it should have, but she did so good. Honestly, I think she knows where she is at when we are at the hospital and sort of knows what to expect. People in scrubs just do not phase her it seems. The silver lining of a crummy situation, I guess.  

 

We also didn't have any problems with Brynlee's heart rate during recovery from sedation. Actually, Brynlee woke up when they took her off of the scanner, so we really didn't give her a chance to have a heart rate issue since she wasn't asleep, but either way, I am glad we didn't have any issues. The only downside to her being awake when she comes off of the scanner is that she didn't get to sleep off the Nembutol before clinic, so she was a little bit grouchy and tired by the time we got to clinic, but she is usually grouchy and tired by the time we get to clinic every time after being sedated, so I guess that was nothing new.

 

Brynlee's MRI scan showed essentially no change in her tumors, which is good. We look for stability and no growth or anything new popping up when we scan. Brynlee has finished 3 cycles of the Accutane treatment, and we were initially told that we would be doing 6 cycles; however, the doctor mentioned that we might do 12 cycles. 12 cycles would be a pain, but if the Accutane does what it is supposed to do and matures any remaining neuroblastoma cells so that they don't divide and grow then we do what we have to do. I would much rather have her get extra cycles of Accutane and have it work then stop it too soon and need to go back to chemotherapy treatment and all that comes with that. We will do an MRI and MIBG scan in 3 months and determine at that time how many cycles they want to do based on how "bright" her tumors light up on the MIBG scan.

 

So other than an upcoming orthopedic appointment and, of course, our never-ending physical therapy, we shouldn't have anything medically going on until November. Yay!

 

We took off for Park City this weekend to celebrate Blair being home and Brynlee's good MRI scan and to get in some fun before school starts. We got an awesome last minute deal at one of the Canyons resort lodges. The girls were so thrilled and excited to get away. We went swimming (but we accidentally left Brynlee's new life jacket at the pool - Grrr!), and we also checked out this spider climbing thing and the scenery and whatnot around the Canyons.

 





 

The next day we headed over to Park City Mountain Resort to get in some alpine sliding. They only require that you be 2 years old to go down the slide, so Brynlee was able to go. It was a lot of fun, although someone may have wrecked with one of the children their first time down, and no it wasn't me and thankfully it wasn't with Brynlee. We are just glad that the injuries weren't more serious, although those burns are going to take awhile to heal. Slide rash is not pretty!

 



And, finally, what scan week wouldn't be complete without a visit to the Cheesecake Factory. We started a tradition over a year ago of getting some tasty Cheesecake after scans as sort of our reward for enduring the ordeal that is involved with scans and everything else related to Brynlee's medical issues. We originally said that we were celebrating good scans when we started this tradition, but we have also decided that if the scans aren't good that we will still have Cheesecake to commiserate our sadness. We try to look for any excuse to have some Cheesecake.  

 

This smile says it all....