Briley had her monthly scheduled appointment yesterday at Cooks for CBC, port flush, and doc visit. She has been neutropenic for the past couple of weeks, so we have been withholding her chemo & bactrim. Because of that, we were anxious to see what her ANC would be. To our relief, her ANC was 1950! This is an extremelly good number! Much better than the 300-400 she's been at the past couple of weeks. She's been battling a sinus infection lately that could have helped boost her ANC up that high. Her hemoglobin & platelet counts looked great also! The doc decreased her nightly chemo dosing in hopes that her ANC won't drop like they did. But they will still fluctuate so she'll have a couple of CBC's done for the next couple of weeks to she what her ANC is doing.
She started back on her chemos last night. Here we go again, but she is moving forward. She is doing great, feeling good, active, eating well, and her hair is coming back nicely. She has just enough hair to clip a bow in!
She asked aunt Jessica want she wanted for Christmas. Jessica replied, "I would like some money"! Briley responded, "don't you want a cure for cancer"? That's all we can hope and pray for. Maybe one day.....
Her next appointment is scheduled for the end of January. She will start the 2nd cycle at that time. It will be another spinal tap day, vincristine through the port, and another 5 day round of steroids. We are thankful that she will only go through the vincrstine/steroid pulses once every 3 months and not once/month per standard protocol. We appreciate everyone's continued prayers!
Tuesday, December 20, 2011
Briley had another CBC done today. Her ANC is 465. Up just a little from last week. We were really expecting it to be higher since she's been without chemo for the last week. So this is a little disappointing to say the least. She's going to be neutropenic heading into Christmas weekend. We will take her to the family Christmas parties and pray that she does not catch a "bug". The doctor wants her to stay off of the chemos and Bactrim until her next appointment at Cooks on the 29th. It seems like everywhere you turn, someone is sick. We are doing what we can to keep it out of our house!
It's official, we will have a CureSearch walk in Wichita Falls next fall. We are excited to help get this walk up & going. I've looked at the list of things to do and we are going to be pretty busy getting everything together. We will be in need of volunteers, so if anyone would like to help out, let me know! The event itself is only hours long, but there is a ton of preparation. I promise it is for a good cause, good for the soul, and an emotional uplifting experience!
Tuesday, December 13, 2011
During Briley's last Cooks visit, her ANC dropped from 2,000 to 1,000. Because of the big drop, the doc wanted her counts checked in two weeks. Today was week 2. Briley, Bryson, and myself went up to the Seymour Hospital for blood work. Briley's anxiety about needle stick is coming back a little since she doesn't have them as often, but I was proud of her for not crying during the needle stick. She was proud too! The nurses blew up balloons for the kids to play while we were waiting for the results and they loved it! Her results came back. Hemoglobin 12.4. Platelets 151,000. ANC 322. I couldn't believe her ANC was so low. She is now neutropenic and will have to be isolated in the house until it comes back up. It really stinks since she was suppose to attend her dance class's Christmas party today and now she'll have to stay put up in the house.
The results were faxed to Cooks. They called back and said that this was normal, but they wanted us to withhold her daily (6mp) and weekly (methotrexate) chemos for a week. Although she will still take her Bactrim 3x/week to prevent a certain pneumonia.
We left the hospital and sitting in line at the drive thru waiting for lunch. Briley made a little noise. By the time I turned around to see what was going on, it was too late. She threw up everywhere. Bryson was doing his best to hide in the car seat so that he wouldn't get hit! Anyway, we got home and she got a bath. Then I had to clean the inside of the car, car seat, clothes, you get the idea.
I thank God that she is staying healthy and fever free. It is sick season now and we will take extra precautions to keep her well, especially since her ANC is that low. The nurse said her counts will fluctuate like this until the end of treatment. March 2013 can't get here fast enough! We were going to send her to Kindergarten next year, but now I'm second guessing that decision because of today's counts. Hopefully her counts will stabilize by then once the right dosing is figured out.
Thursday, December 8, 2011
Briley has been doing very well and feeling great!! Her hair has come back in and is growing very fast! She loves putting clips in her hair. One thing about it, her hair loss broke Bryson from pulling her hair!
I wanted to drop a little note and let you know that we and a couple of other cancer kid's parents are planning a Curesearch Walk in Wichita hopefully in September. Curesearch funds the Children's Oncology Group (COG). The COG is the leading pediatric cancer research in the U.S. As you may know, Briley is currently under a COG research trail. Thanks to them, Briley's particular leukemia survival rates have increased from almost certain death in the 1950's to 90-95% today!
Funding for kid's cancer research is very minimal compared to adult. Most will argue that kid's cancer is rare, hence the reason it receives less funding. While that may be true, years of life lost due to pedi cancer almost equals that of breast cancer. Plus, it's just not fair for these innocent kids to get this awful disease. This adventure has changed me. Not only because of Briley's leukemia, but also the kid's that we have met while at Cooks. A few of them are no longer with us. I'll never forget talking to a teenager that had terminal cancer. They gave him 3 months. This is what drives me to do something more.
A couple of folks have told me that they would love to donate to Curesearch, but have already donated to another cancer charity. While that's great, there is a big difference when donating to one or the other.
For example: NCI gives 3% to pedi cancer. ACS allocates .4% towards pedi cancer. What little federal funding there is for pedi cancer was actually cut this year. I find it appalling that the ACS spends more money on a program to ban smoking in bars in S. Africa than they do on pedi cancer research.
I've really opened my eyes and look further into programs as to where the money that I donate actually goes. A good place to do this is at www.charitynavigator.com. I look up just about every charity that ask for money from us. You may be surprised to where your money is actually going. If I donate my money for "the cure", then I want it to go to research and not the majority of it paying for salaries and overhead.
With that being said, I'm not condoning ACS, NCI, or anyone else. I think they are great and have their place. A lot of good hearted people work hard for "the cure". Thanks to them, advancements have been made that would not have been possible without them. I just wanted to point out the difference between the adult & pedi cancer worlds. It's two totally different worlds.
94% of your donation through Curesearch will go directly to research! That is awesome! I will keep the progress of the walk updated. I just wanted y'all to keep it in the back of your mind and would love to have you join our team. I would love to see the Team Briley t-shirt wearing folks in force at the walk. Thanks!
Thursday, December 1, 2011
We arrived in Fort Worth with great anticipation of the party. With a little help from the gps and navigator Alicia, we made it to the downtown office without any problems (I get turned around in downtown pretty easy). Thankfully Bro. Terry met us downstairs and led the way up to the floor. We would have got lost just doing that! I guess it's the classic case of small town folk in the big city!
We made our way onto the floor and met lots of nice folks who were excited to have us, but especially because they were able to finally meet Briley. They all have heard how their company's foundation was going to do something special for a little kid with cancer, seen the pictures, and now finally meet her in person! We walked into the meeting room that has become, for a short time, Briley's party room! There was a big poster hanging on the wall with "Princess Briley" on it, along with pink & black cupcakes with a "B" on them. The pizza & frito pie fixings were there waiting for Miss Princess to chow down! The walls of the room were covered with dry erase board and the kids had free will to write on the walls. Bryson took advantage of the opportunity! Then a very special surprise walked into the room! Cinderella & Belle stopped in to eat with Briley. She was very excited to be able to eat with the Princesses! Bryson developed a crush on Belle. He gave her kisses and fed her pepperoni! After the meal, both kids got a bucket full of toys, which was great and kept them occupied on the ride home. We were on the 14th floor and the kids just thought that was the neatest thing and loved looking out the windows. Briley had to make sure that everyone looked out the window and saw how high up they were! We have pictures of the party on our facebook, so if you get a chance, take a look at them!
Briley had a 12:30 appointment, so we had to leave out from the party. I think the kids would have stayed there all day if they could have. Some how, I manage to find my way to Cooks without the gps, however I think I took the long way there. Briley had her port accessed, blood drawn, and port flushed. Her ANC dropped from 2,000 from the last visit down to 1,000. Although it's still a fairly good number, we would have liked to see it a little higher. She will have a cbc done at the Seymour hospital in a couple of weeks to see where her ANC is at that point. Because of the big drop, her home chemo (6mp) may have to be decreased a little bit. Once again, low counts and sick season have us a little on edge. But what can you do? Keep moving forward is what we are going to do! Briley's hemoglobin & platelets are very good and so is her mobility. Her next appointment is scheduled for Dec. 29th.
We would like to thank Bro. Terry, Mandy, Ken, & the rest of the gang at Richland Resources and the HopeWell Foundation for doing everything they have done and continue to do. They put in a lot of thought & work to make Briley's day (and ours) very special. It was good for us also to meet the folks that are doing so much for our little girl. They will never know how much we appreciate everything.