A Wish With Wings Christmas Party...

Today was a fabulous, unbelievable day. Payton is registered with the A Wish with Wings Foundation and today was their annual Christmas party. The party was held in downtown Forth Worth at Del Frisco’s. When we arrived we were greeted by all the Dallas Cowboy Cheerleaders which spent time walking around and talking with all the kids. Savannah got the chance to dance with the cheerleaders and they wanted to talk to her about how they are dancing with Jonas Brother on Thursday. It was followed by the arrival of Santa, Mrs. Clause, Elves, Frosty, Fire Trucks, Herbie, Spider Man, Clown, and guy walking around playing Christmas music on the flute and a great lunch. The kids received various gifts including a wood rocking horse for Payton. I had debated whether or not to take Savannah out of school but was so glad that I did. Chad stayed home as well and it was an awesome family outing since we have not all spent a full day together since our vacation to Utah in July. One of us is constantly gone. What else can I say other than it was an awesome way to spend a fun family day. I’m amazed at the effort these wonderful people took to organize such a neat event, thanks A Wish With Wings!

Recap of the past month...

I decided it was time to start blogging again now that life has started to slow down a bit, but does it really ever? It has been a crazy few weeks. At the first of the month we moved my sister into another house. I know that it has been quite the adjustment for her going through her divorce and having to pick up her whole house and move. I still don’t know why we have some of the challenges in life that we do. All you can do is get through it the best you can and hope that you learned what you were supposed to learn while going through the process. I am really proud of her and the strong person and mom that she is. She is not only a great sister but a very close and dear friend to me. After moving her into her new home, we decided to do a Garage Sale the following weekend to try and get rid of some extra things that we both did not need to clutter our lives anymore. It was very successful and we had a great turn out. I am actually a people watcher and enjoy that part of it. Once I can get past the initial part of getting it ready and setting it up, that’s when I enjoy it. Let me just say, you always run into some really interesting people. I am really happy to have it over and to have my garage in order once again.

As far as the family goes; Savannah is doing great in school. I am so pleased with the great year that she is having. Savannah will come home from school and quickly want to get her reading and homework done first. She takes after her mom in the sense that if we know we have to get something done, we want to do it right away to get it out of the way. She is very sweet, very polite, and it turning into such a great girl. I am so proud of her in so many ways. And for Payton, well he is continuing to do well. He is really enjoying preschool and looks so forward to seeing each of the kids. He spends his morning saying can I go see Nicky, and Jeffrey and Ella. His favorite day is Wednesday when he gets to bring something for show and tell. Payton has got quite the cute personality when playing with his cars and will talk between the two of them, I love it. Payton still has Halloween on his mind, since on a daily basis he asks us all what we are going to be for Halloween. Payton is very excited for Christmas and asks on a daily basis as well “Is it Christmas time yet, Mom?” I think that he is a little thrown off since all the stores start to decorate and start to put out Christmas toys so early. Payton’s 9 month after treatment CT/MRI Scan is coming up on December the 11th. Payton occasionally complains that his stomach hurts and when I ask him to point where it hurts, he points to his chest. Hopefully it’s just some scar tissue from his port removal and nothing further. I try to put this all in the back of my head, but when scans start approaching I have to admit I start to feel my heart thumping hard and start to feel really anxious. I am so grateful that Payton is doing as well as he is and I thoroughly love watching the little boy that he is growing up to be. All of this has definitely made me slow down in my life and enjoy the little small moments. We are all really excited for Thanksgiving and are planning on staying at the house and having my sister come over with her kids. I feel especially grateful this year to be at home with Payton since last year we were at Cook’s. I am so thankful for all my family, friends, and loved ones. I hope that you all have a wonderful and safe Thanksgiving wherever you spend it. Thank you for being a part of our lives.

Our little miracle boy...

Enjoying this lovely fall weather

We found out today that the experimental protocol, UH-1 that Payton was on during his treatment has been closed due to serious neurotoxicity and gastrointestinal complications that occurred during treatment. Of the 53 children that have been enrolled, six of them have experienced Grade 4 complications, which are serious life threatening complications and three have experienced Grade 5 complications, which sadly means the children did not make it through treatment and have passed on as a result of the treatment, not the cancer. The head of the study group has decided to reduce the chemo doses on three of the five chemo drugs that are part of this protocol. The chemo drug Doxorubicin was directly linked to the heart issues that caused two of the three deaths. We witnessed first hand the toxicity of these chemo drugs and this regime. Honestly, there were times I watched Payton and wondered and prayed that he would make it through it. There were times I felt Payton was near his death bed and then brought back again.

With that said, we feel so lucky to have gotten through the chemo regime with minimal complications. I remember Dr. Bowman making a comment after Payton’s first round of chemo regarding the treatment protocol, he said “It’s like they are trying to hit a home run out of the ball park.” There’s been a lot of effort placed into finding the right balance between hitting these kids hard without having the treatment itself take their lives. I’m very grateful today as I know we were watched over and blessed that Payton survived the treatment he received without any major complications. Payton has recovered so nicely and I keep hoping that we don’t see any major side effects in the future (i.e., muscle, vision, dental, heart problems, secondary cancer, etc.). I often wonder whether subjecting Payton to the harder protocol was the right decision. I continue to pray to see good results and continue to believe that Payton’s fate is in the Lord’s hands. I am once again reminded of the true miracle that Payton is today.