Isabella R.
Diagnosis: Neuroblastoma Stage 4

The last everyone heard, Bella was still inpatient for her Bone Marrow Transplant. We had a few rough days but thank god all went well and on June 10th we left the hospital. We had only spent 22 days inpatient but it did seem much longer.  Bella did great and we only had to visit the stem cell clinic once for a check up and they released her. We were so blessed.

 

Bella did great the rest of June. The end of June we finished discussing her radiation treatments and they did her tattoos for her markings. They were super small and looked like a freckle. We started her radiation on June 28th. We had to be there each morning at 7am Monday through Friday. They would put her to sleep for it. The treatment only took 10 minutes or so and after she woke up we would leave and go home. We were usually out of there by 9:30am. We had 12 cycles to get through and that is exactly what we did. She did wonderful again. She blew through it all and never looked back. She never even got sick through it. Bella did get a little tired but no where as near as bad as we thought it would be. We finished radiation on July 12th.

 

July 17th we had a fundraiser for Bella at our home Baseball team stadium. Bella got to throw out the first pitch and we had over 22 businesses donate items for us to raffle off. We had Isabella cancer T-shirts made and they sold like crazy. It was a great night and we had a great group of friends help us out.  Isabella had a blast.

 

The following week, on a Wednesday Isabella ended up with a line infection in her Hickman. This was the first one she had ever had in the 9 months she’s had it in. We were so fortunate to get this far with no infections. We were inpatient for 6 days. Since Bella had to have medication every 8 hours we were allowed to leave the hospital each day inbetween her medications being due. It was nice because she was not hooked up to any IV’s and she was free to roam the hospital all day so coming home each day made the days go faster and better. We agreed that we would pull her line on the next Thursday after her next set of Bone scans, MIBG scans and Bone Marrow Biopsys.

 

The following week starting on Monday and ending on Thursday was the week of testing. We had Bone scans, Bone Marrow Biopsy, MIBG scans and EKG and and Eco. EVERYTHING CAME BACK N.E.D. (no evidence of dieses.) We were glad we were still in the right direction and that things were looking great. We left the hospital on that Thursday with great news and No Hickman or “tubies” as Bella calls them.

  

We got to stay away from Doctors for almost 2 weeks. Then we went in and started discussing the next step in treatment, which was Antibody therapy and Accutane (oral chemo). We had decided we would start on the 22nd of August. We wanted to get it done for August before Bella’s brother J.D. started first grade on the 30th.   We did start treatment on the Tuesday and we ended Antibody therapy Il-2 and Ch 14,18 on Wednesday due to severe issues she was having. It was a decision that we had to make and it was a hard one but due to the issues we did what we felt was 100% right. So we are now just doing the Oral chemo AKA accutane.

 

Isabella is still the happy go get em little girl you see in the pictures. She is adjusting to her brother being back to school. She misses him and is kind of lost during the day without him. Isabella is busy with her new puppy as well. He is a Chesapeake Bay Retriever. His name is Kodiak. She named him after her old St. Bernard Kodiak. He was given to her by the owners of Chestabar Kennels. They are wonderful people and have been so kind to us and Bella. The kids have a blast with him.

 

We are super excited for October. Over Isabellas Birthday we will be in DISNEY WORLD!!!! We are going the 23-29th. We are ready for the trip. We are going through Make a Wish.

 

We want to thank everyone for all the Cards, Prayers and Gifts. We do try to send as many cards back to people as possible. If you did not get a response back, please know that we work on them each week. Isabella and JD LOVE getting mail. It makes their day.

 

Thank you all again for your kindness to our family. It is appreciated more than you know. It is amazing what a little mail can do to someone.

 

GOD BLESS,

Shannon (Isabella’s mom)

Davyn M.
Diagnosis: Histiocytosis

I am so happy to share that Davyn’s condition continues to be listed as stable.  He has begun having headaches and neck pain, but no new lesions.  We believe the headaches and neck pain are related to the Chiari Malformation and Syrinx.  We will be reevaluating with his Neurosurgeon and repeating MRI and scans in October.  We were able to enjoy a wonderful summer full of lots of quality time together and lots of adventure. 

 

I am so thrilled to say that as of 09/01 Davyn has begun Kindergarten.  This is a huge milestone for him as back in December we were told not to expect much hope.  Thank you Lord Jesus for this milestone and for each and every day.  Thank you all for sharing our journey with us, for constantly lifting our spirits when times are hard…we are blessed and honored to share our lives with you.

Stephanie (Davyn’s mom)