Friday, September 30, 2011

Counts, Decisions, Stress

We left out of Seymour around 4:30 yesterday morning for Cooks. Briley and Alicia slept the entire way as I downed the coffee. After arriving at clinic, Briley's port was access and blood drawn for testing. Her ANC had dropped to 890. Although this is still considered good, it will continue to drop. Her next appointment is October 10th and her ANC must be over 500 to receive treatment. We will have a CBC done on the 9th here in Seymour to see if she can get the next treatment. After her lab results came back, we talked to the doctor a good bit about some of our concerns. Briley has gotten into the habit of not minding and has a short attention span, kinda like ADD. The doctor assured us that it probably was not ADD, but the effects from the chemo and also the drastic change in our home life. I guess if I was 4 years old and stuck in the house for 3 months straight, I might go a little wild also as soon as I was able to get out! I think we are well over due for a vacation! The doctor did say that she will have neurological test ran before she starts the maintenance phase.
Briley went down for the lumbar puncture and chemo injections. All went fine. The research nurse stopped in to pay us a visit. We are to the point of treatment that we must decide on what path Briley will go down. Do we stay with the standard protocol that has been proven effective? Or do we say "yes" to research and be randomized into a treatment arm? The COG is wanting to know if they can get the same results with less chemo. Now, I have been sick worrying about the late effects of the chemo, so less would be good. At the same time, if she ever relapsed, I would never forgive myself. With that being said, we have a lot of reading and data to look over. I am on the Internet researching what I can. But ultimately, we will give it up to God. He has been such a powerful force in this journey and I can promise you that He will not lead us wrong. Many Many prayers will be said over the next few days and we would appreciate if you prayed for us to make the right decision.
After the spinal tap, Briley went back to the clinic for her chemo. It is weird to watch the chemo work. She was in such a great mood until the Methotrexate dripped into her veins. It wasn't long before she wanted mommy to hold her. I hate Methotrexate..........and also the late effects. The nurses were great with the nausea meds! After we told them about our past experiences with the increased doses of the MT and how Briley got sick on the way home, the nurses hooked her up! She never got sick and slept the entire way home.
I know this was a little long, but so much happened yesterday. Alicia and I are very stressed about this decision we have to make. At this rate, I'll be bald by Christmas! We will keep all of you updated through out this pivotal time. Thank you!

Tuesday, September 27, 2011

CureSearch Walk

We left out for Tulsa, OK friday afternoon to attend a Curesearch walk with Briley's friend, Gracie. We met Gracie's family during our time at Cooks and have became friends since then. Gracie started kindergarten this year and is currently in remission from neuroblastoma. She has 2 brothers and one sister. We have never met the siblings before, but they were excited to see us as we were excited to see them. We arrived at the Bloxham's house around 10:30 friday night and stayed up talking and letting the kids play after midnight. We finally got them down to bed and got up early the next morning and headed out to the walk.
To tell you a little bit about Curesearch. It raises funds for the Children's Oncology Group (COG). Briley & Gracie are under COG treatment protocols. Thanks to the COG, overall pediatric cancer survival rates have increased from 30% in the 1960's to 80% today! ALL (Briley's leukemia) has a 95% survival rate thanks to the COG! What is cool about Curesearch, 94% of the money raised goes directly to research!
Anyway, the walk started off with the opening ceremony. Families of kids lost to cancer received balloons and then released in remembrance of those kids. It was a very emotional scene for all of us. Then they had all of the kids that are currently in treatment or previously had cancer walk up on stage, say their name, and receive a medal. Briley acted like she owned that stage! She was front and center and I was proud of her!
The walk kicked off. It was a 3 mile walk around a golf course and through the park. We stopped at the finish line for pictures and then the coolest thing happened that I think I ever seen. A 10 year old boy, who lost his left leg below the knee from cancer and had a prosthetic leg, crossed the finish line. This boy had walked the entire 3 miles and you would have thought that he won the lottery when he came across the finish line! I guarantee that he was the happiest kid on earth at the moment. We all cheered him on! It was an awesome experience!
After the walk, we went back to the Bloxham's for a BBQ. The food was great as was the fellowship. The kids played their little hearts out. Bryson made a new friend with Von. They are both the same age and you would have thought that they were long lost brothers!
We left Tulsa around 5:00 that afternoon and got home around 11:00 that night. We are looking forward to having a Team Briley team at the Curesearch Walk in Fort Worth in May. The actual date has not been set yet, but we would love to have anyone that would like to, join us for the walk. We will have fundraisers as time gets closer. Together we will increase the pediatric survival rate to 100%!
Briley's next treatment is this Thursday. She will go in for a spinal tap and chemo at the clinic. We will keep you posted on how things go. Thanks for keeping us in your continued prayers.

Tuesday, September 20, 2011

Another treatment closer to being done!

Briley had her scheduled clinic appointment yesterday at Cooks. We arrived late as usual (never my fault, just don't tell Alicia that)! Briley's blood work and chemistries came back very good so she was able to proceed with treatment. She had the vincristine and an increased dose of the Methotrexate. We were very proud of her for not crying while getting her port accessed and dc'd! This was a first! The doses of Methotrexate increase with every visit and it shows it's ugly face after the Zofran wears off. Luckily, we were able to pull over in time and give her another round of nausea medicine before everything came up. She went all day without eating again due to the chemo. But today, she is doing great and she was able to go to dance class!
Another ugly side effect that we are just now noticing since dance class has started is that she is so far behind all of the other girls in the class when it comes to mobility. She will improve with that once the vincristine treatments are over with. She will have two more treatments this phase and then she will be in maintenance! The next treatment will be on the 29th. It will be another long day with a Lumbar Puncture with meds and chemo at clinic.
We are very excited to be leaving out Friday afternoon for Tulsa! Briley's friend, Gracie, who has just completed treatments for Neuro blastoma, has a team for the Curesearch event that we are attending. Both Briley and Gracie are very excited to be seeing each other and Briley is even more excited that she gets to stay the night at Gracie's house! We will drive home after the walk on Saturday. Curesearch raises funds for the COG research that Briley is a part of and we are happy to support such a wonderful cause. If you never heard of Curesearch, I can best describe it as being like Relay for Life, but funds pediatric cancer research. We will have a Team Briley team for the Curesearch walk in Ft. Worth that I believe is in April. Feel free to join us!

Wednesday, September 14, 2011

9/14 Update

Briley's last clinic appointment went just fine. Bryson also went with us and I think it helps Briley having little brother there with her. Briley is getting very good about not crying when her port gets accessed! We saw a little boy there that we haven't seen since our first month of treatment. He had AML and is doing very good! It is very encouraging to see kids conquering this awful diesease.
Briley is doing very well and acting like a normal 4 year old should. Even though her and Bryson cannot go to daycare yet, we have decided to let her attend dance class and "church school". She needs to get out and be a kid. But I'm sure the first time she gets sick, that will be the end of that. She will still have to be hospitalized for a week at Cooks if she gets sick. We will still be "on guard" for signs of sickness and if anyone around appears to be sick.
Most other kids that have been around Briley have adapted well with her lack of hair. This was a concern of ours and still is. A couple of kids have asked "did you get a new haircut"? We laughed and explain and that was all that was every said about it. We took Briley to the mall a few days ago. She was wearing her mask the whole time and a young boy asked "where did your hair go"? The parents immediately started apologizing. We told them not to apologize, kids are naturally curious and are not afraid to ask. However, Briley did have one girl say "your hair looks funny" and said this over and over with her mom standing right there. Mom said something to her daughter, but this did not phase her and she continued to say that her hair looks funny. I know kids are kids and that she meant no harm, but we were dissappointed that mom didn't do more about the situation. This really hurt Briley's feelings and that's all she talked about that night.
I think that if you explain to the kids first about her hair situation then they will understand and move on. This worked very well with the kids at dance and not a one of them said a thing about it.
Briley's next appointment will be on the 19th. It will be a short (hopefully) visit for the vincristine and MT. Only 3 more clinic visits until Maintenance!

Wednesday, September 7, 2011

Back to Ft. Worth Tomorrow

Briley has a clinic appointment tomorrow at the clinic for scheduled rounds of the vincristine and methotrexate. The vincristine is the the chemo that affects her walking and running. The methotrexate has caused the vomiting the last go around with it. Her appointment is not until 3:00 that afternoon, so we may take Bryson, leave out early, and take them to the zoo before the clinic visit. We told Briley that she could go to the zoo as soon as her counts go up. Well, they are up now!
We would like for you to say a quick prayer for a little girl from Abilene, Tatum. We met her and her family during Briley's last clinic visit. Both her and Briley went in for spinal taps. Tatum had the same leukemia as Briley and they were very excited at that time because this was to be her last spinal tap and they would be finish with her treatments in November. Leukemia cells were discovered in her spinal fluid during the spinal tap. She had relapsed. Tatum will have to start treatments all over again. My heart aches for this family as I cannot imagine having to start over. It just makes me sick. Please take the time to say a prayer for her as we well know how the goodness of the Lord can help healing. Thanks!