Continuing Great News!

It’s been 6 months since Kaylee’s last MIBG scan in October, which is so very hard to believe. Kaylee and Jamie headed down to Cleveland Clinic yesterday afternoon for her MIBG injection, while I was at work. Their first stop was in S20 for Nurse Cathy and Nurse Jenny to put in an IV and draw some blood. Kaylee did a great job holding still for Nurse Cathy – these blood draws have really become a non-issue anymore. Gone are the days of Dr. Thompson standing on her head, dancing around, and singing songs to distract Kaylee! Then Kaylee and Jamie headed down to the Nuclear Medicine department for the MIBG isotope injection, and to their surprise, they saw Miss Sarah from Child Life. Kaylee was very excited to see her and that made the injection that much easier!

This morning, Kaylee, Jamie, and I headed back down to Cleveland Clinic for her MIBG scan. Kaylee did a great job holding still for the two parts of the scan, the first whole-body image being about 15 minutes, and the second 35 minute scan with rotating cameras. Of course, Kaylee and I played Uno, and she won several times – I am still not sure how that works out, since I can see her cards! We played a guessing game too, where we would think of an animal and the other person would ask questions to help them guess. And before we knew it, the scan was over. We grabbed a quick bite to eat and then headed up to S20 to see Nurse Holly. Kaylee and I were drawing and coloring pictures as Nurse Holly came in, so she joined us for a little bit. She did Kaylee’s exam and said everything looked great! Her blood work from Tuesday came back with good results as well, except for one high level, indicating an inflammation somewhere. That made Jamie and me a little bit nervous as we awaited the results of her MIBG scan. We did not know the results of the MIBG scan before we drove home, but shortly after, I spoke with Holly on the phone and she said it was a clean report! And Kaylee’s next appointment is in 3 months, instead of 2 months 🙂

So now we can get back to our “normal” life again, which has changed a bit in the last month. With much enthusiasm and excitement, Jamie left his current job, as a quality analyst, to start his own photography business. He is working hard to get all the logistics in place to start his business. I am now back to working full-time, and Jamie has become Mr. Mom at home, helping the kids get to and from school, doing laundry and making dinner. This change has been a learning experience for all of us, but we are all growing and excited about what the future may hold.

Both Kyle and Kaylee are doing very well at school, and are currently enjoying their spring break. Kyle finished a fun basketball season last month, without any issues with his knee! He is signed up to play summer baseball and is still very active in Boy Scouts. I even joined him on a weekend camping trip (in a cabin, with indoor plumbing!) last month. He has a follow-up appointment with Dr. Saluan, his knee surgeon next week, so we are hoping for some more good news, and possibly a discharge from future appointments! Kyle’s knee surgery was almost 2 years ago, so we hope to see more bone growth on his x-rays this time. He rarely has any pain in his knee, which is a great thing!

Kaylee took a several sessions of a dance class through the city and thoroughly enjoyed herself. She decided to take a break for now, and is awaiting the start of the softball season. This will be her first year playing softball, so it should be interesting as she learns new skills and the rules of the game 🙂 I truly enjoy watching the kids play their games, so I am looking forward to watching both of them this summer.

In my last post, I mentioned that Kaylee and Jamie were going to a Father/Daughter dance for Girl Scouts on the night of her 2 year remission anniversary. They had a wonderful night, and Kaylee danced the whole night with Jamie and her friends, laughing and having a great time. They brought home a few sets of pictures from a picture booth, with everyone smiling and being silly 🙂

Then the next night, our family was invited to a Littlest Heroes fundraiser at the VFW in Willoughby. Grandma and Papa with the Trailer joined us for the evening too. I gave a short speech about the Littest Heroes and all that this wonderful support group did for our family during Kaylee’s treatments. I have to admit that I didn’t even make it to the microphone before I teared up, but Jamie, Kaylee, and Kyle went up with me, so we were all together. Somehow, I made it through the speech, and then Kaylee danced the night away to a live band. Her Twinkle Toes shoes lit up the dance floor each time she moved her feet. She learned how to twist and Kaylee, Grandma, and I danced, and danced, and danced all night long 🙂

So as you can see, our family has been very busy and enjoying fun activities. Jamie, Nurse Holly, and I talked today about what an amazing story Kaylee’s journey is…none of us knew that Kaylee would be so happy and healthy 3.5 years after her diagnosis. I truly believe that all the prayers and love helped get her to this point, and we are so ever grateful for all your continued support and prayers. We thank you and send lots of prayers to each of you too.