Follow-Up Appointments

This month Raylee had several appointments for follow-ups. One day she had a bone scan which required sedation. They injected her with a type of nuclear medicine for this. The images took around 45 minutes. I am posting a picture of the machine that took the images. If you have ever seen the GE commercial which talks about GE employees saving life's because of the medical machines they build....this is one of those machines---I absolutely love that commercial and hope GE makes more!!

Another day, Raylee had to have CT Scans. The possibility of being sedated for this scan is very high for 4-year-old and younger. Raylee has never needed sedation for a CT until now. She started crying when she saw the CT Scan and would not lay down in it. The images for the CT only take about 10 minutes but there was no way she was going to cooperate. So she was sedated for these images :( Sedation is not fun, nothing about it is simple. Despite Raylee's lack of cooperativeness for the CT she was very cooperate for the rest of the appointment and tests. This same day we met with her Oncologist. She reviews all the images and other lab samples. She let us know Raylee is looking amazing and there are no tracers of Neuroblastoma!! That is what I've been waiting to hear. What a relief!!

Prior to the follow-up tests, and the day of, you experience a type of anxiety that is very vulnerable and uncomfortable. It is a real uneasy feeling. It is more like a numbness that consumes you. I know at this time I have tunnel vision and the only thing I am really thinking about are those damn tests! Those damn tests which we are now dependant on to find tracers of the cancer that may or may not come back. Tests we are dependant on to continue to do all that we can to ensure the health of Raylee.

Become a Bone Marrow Donor

Today Jerry and I signed up to become bone marrow donors, hopefully for a little girl named Milly. Milly is in need for a donor as none of her family members are matches. We signed up and had our cheeks swabbed for DNA samples. This was done through a drive with Be The Match. Be The Match Registry is operated by the National Marrow Donor Program® (NMDP).

Be The Match web site states, "Each year, 10,000 patients need a marrow transplant from an unrelated donor, but only half receive one." We can all make a difference. If you are interested in becoming a bone marrow donor please check out the following website for more information: bethematch.org

Raylee's Wish

Today we went to The Wishing Place with Raylee. Upon arriving to The Wishing Place they had this huge sign by the door that said "Welcome Raylee." We met Raylee's Wish Granting Volunteers, Matt and Natasha; they were excited to finally meet Raylee and gave both Jorja and Raylee gifts. They were super friendly and made the experience fun. They had Raylee write wishes on her Wishing Paper (Jerry helped her) and everyone else write down a wish for Raylee on separate papers. Raylee unlocked the Wishing Room with her Wishing Key (Jorja helped her with this) and we entered a round room where we all stated the wish we wrote down for Raylee. Then they placed all these wishes in an antique looking envelop for Raylee to keep forever. They had Raylee put the wish she wrote down in a little cylinder and placed it in a cone that was in front of a waterfall in the middle of the room. It is very difficult to describe. The room had no windows and the lighting was dimmed with a bluish light. The water fall was in the middle of the room. It seemed as if the floor was a type of glass instead of tile and I was even nervous to walk on it. The room actually frightened Raylee. She was really nervous and the staff at Make-A-Wish said that most 3-year-olds get frightened in the room. Once Raylee placed the cylinder in the cone they put a lid on top and told her, her wish was sent to the Wishing Wizard. This kinda of frightened her too. To this day she still asks what happened to her Wishing Paper. We tell her it went to the Wishing Fairy, she likes that a lot better than the Wishing Wizard.

Raylee had wished to meet Jessie from Toy Story. She loves Toy Story and has a cowgirl costume from Halloween she wears frequently pretending to be Jessie.

Jorja the Ski Bunny

Jorja went skiing with her class at a local ski resort. She had a blast and was so excited to go. They took a charter bus and received rock star treatment. She enjoyed going on the ski lift and down the hills. She fell several times but always got up. She talked about skiing for days....this is something we definitely need to do as a family.

PJammin

PJammin was a huge success!! At least 4 elementary schools participated. I took Jorja to school and it was incredible to see all the students in the pjs for such a great cause. It brought tears to my eyes. Jorja's teacher told me the entire school participated and had so much fun. She told me I should have called the news. :) They want to do it next year. They received a letter from another parent who has a little niece fighting cancer, and this parent explained how grateful they were for Pjammin Day. One of the elementary schools that participated also made 100's of cards for the oncology patients at Primary Children's Hospital. Raylee was able to deliver those cards for them. I will include a picture of some of the students and the cards.

I just want to thank everyone who participated in this. It was a lot of fun and I am hoping to make it a more widespread event next year.