Friday, January 27, 2012
Everything went very well yesterday. Her ANC was just below 800. That's about the where she needs to be. All of the other blood work came back good, the doc came in for a visit, the vincritine went in through her port and off to the SPA we went for the spinal tap. The spinal tap went as planned and and we were out of there in record time! She started the five days of steroids again so we stocked up on frito pies! All in all, it was a good day. Thanks!
Wednesday, January 25, 2012
Briley has a scheduled appointment for tomorrow for a spinal tap with chemo and chemo in the clinic. For those of you that have asked what the purpose of the spinal taps are, I will explain. Briley will go into the Special Procedures Area, or better known as the SPA, for her spinal tap. They will put her to sleep and then insert a big needle into her spinal cavity. They will withdraw a certain amount of spinal fluid (CSF) and then will replace the fluid they took out with the same amount of chemo. Although Briley has never had leukemia cells in her CSF (Thank God), the chemo is injected for precautionary reasons. The CSF that they take out will be placed under a microscope to determine if any leukemia cells are present. The procedure takes approx. 15 minutes. We are away from her for about 45 minutes total. The wonderful thing about Cooks is that we are able to be with her until she is put to sleep. Since she so accustomed to the procedure, she is usually kicked back watching TV when we walk into the recovery room.
After the procedure, she will go back to the clinic and get chemo (vincristine) through her port. After that, we are free to go. Her appointment is for 7:15 in the morning and we are usually out of there by 1:00 or so. The nurses will access her port, run a CBC, and we will visit with the doctor before the procedure. Lunch is usually waiting at the clinic when she is done with the procedure.
She is just as happy as can be right now. We drove to Ft. Worth tonight and got a motel room to save from leaving Seymour at 4:00 in the morning, especially since there is a chance for rain & fog. There's something about a motel room they excites her. Hopefully she will go to bed soon!
On a different note, one of the first cancer kids that we met after Briley first got diagnosed, Liam, passed away a few nights ago. He also had Leukemia. Him and Briley played together during her time in the hospital. Please take this time to say a prayer for Liam's family. They have been through enough pain already and now I can't imagine the pain & suffering they are going through. Thanks.
Sunday, January 22, 2012
It's been a year today, well technically yesterday (12:30am). I wanted to wait until the kids were asleep to begin writing as I can better reflect on this past year. The previous post reflected on day 1. I wanted to sum the year up in this post, both the good & bad. Briley was diagnosed on January 21st, 2011. It was a Friday. She started her chemo on the following Monday. Two nurses came into the room. Both nurses were wearing a gown, mask, and gloves. The chemo was in a bag with HAZMAT labels on it. It is pure poison. My anxiety level rose as the first chemo dripped into her veins. At that time, I would have gave anything, even my life, only if I could be the one with cancer. Not my 3 year old daughter.
The 29 straight days of steroids also started that day. The staff warned us about the the physical and mental changes to expect, but how bad could it really get? Well, let me tell you. She ate, and ate, and ate. If she didn't get what she wanted, the roid rage kicked in. She would literally sit in bed and eat all day. She wouldn't walk because of a combination of leukemia and steroids made her legs and back hurt. She could only stand with assistance. She gained tons of weight. We kept food stocked in the room. She would wake up every 2 hours wanting something to eat and if we didn't have it, she would throw a fit. It was a very trying time. The staff at the Ronald McDonald House jumped on her on day while she was throwing a fit. It's not her fault. We let them know a thing or two.
That was a long 29 days. However her immune system was still compromised. Briley got an respiratory infection that most kids wouldn't even see the doctor about. It was serious with her. Her O2 stats were low. She had seesaw breathing. I have just enough medical knowledge that to be scared. I would stay up until 4 or 5 in the morning watch her breathing. I was afraid it would get worse or she would finally tire and give out. She recovered from the infection and that was the last she was admitted to the hospital.
Over the next few months, she was able to stay home, going back to Cooks for regular check-ups and treatments. Cancer affects us all. I had to quit 2 jobs. Alicia's pay is still being docked from paying subs to take over her classroom while she was out. Since Briley and Bryson can no longer go to daycare, I have the luxury of having a job where I can stay home most days of the week and keep the kids. Although I've packed on about 25lbs since June. I've gone nearly bald on top from the stress of the past year.
But there is good to come out of this. We've met and made lots of friends during our time there. And just not at the hospital, this town has really rallied around us. I've talked to people that I wouldn't have talked to before cancer. The amount of support that we received has been awesome. We never once had to worry about paying her medical bills, gas down there, hotel rooms, food. We were even fortunate enough to replace the carpet in the house with laminate flooring. Between that and the air purifiers we have going in every room 24/7 has kept Briley out of the hospital. We are doing everything in our power to keep her from getting sick and it has paid off so far. Washing & sanitizing hands and keeping her isolated in the house during low counts have been key. But above all else, we thank the Almighty Lord for watching over her. He has a plan, yet we don't see it. He has heard all the prayers. This is one special girl.
I can tell you, I've been touched by so many kids that we have met going through treatments. Some have earned their angel wings. I will always cherish the conversation I had with an 18 year old that the doctor gave 3 months to live. I rejoice for the kids that have beat these diseases. I can tell you, none of these kids deserve to have cancer. Not a one of them. But it's going to happen. So much has been done for us that we want to give back. I have a million ideas floating through my head. Do I start a foundation that will give newly diagnosed kids iPads or help with medical bills? Do we start a cancer support group for residences of Seymour that will help with bills, meals, rides, ect. We are currently planning a Curesearch walk in Wichita so that's a pretty good start.
One year down! A year and 2 months to go! We are looking forward to a big party at the end of treatment!
Tuesday, January 10, 2012
Fair warning, this blog is going to be a little long. I was going to sum the year up, so I started typing. Then I realized that I have a book's worth about the first day. I will sum the year up in a later blog.
It has been nearly a year since that faithful day Briley was diagnosed. I've learned a lot about myself during that time. I think we all have. This blog is a reflection on day number 1.
The day that the doctor said, "Briley has leukemia", is one that will haunt us forever. Briley had a bad case of the flu a couple of weeks. The fever finally broke but she never completely got over it. We noticed that she was pale, bruising real easy, and she couldn't stay warm. She would actually sit in front of a floor heater for the better part of the day. Alicia and I figured all of this was just an after effect of a bad case of the flu. We could only wish.
Alicia's sister-in-law, Liz, continued to tell Alicia over a period of several days that something was wrong and that Briley needed further testing. Since she doesn't see Briley every day, she was able to easily notice something wasn't right. She also lost her 3 year old son to complications from a heart deformity. She had a keen eye.
Finally, Alicia agreed to take Briley to see the doc. Alicia called me and asked that I would make an appointment. Of course I argued with her. I'm the kind of guy that doesn't go to the doctor unless I absolutely need to. If my kids get sick, it will run it's course. But eventually, she made the appointment and I agreed to take her.
The doctor looked her over and advised to have blood work done. Off to the lab Briley and I went. The blood was drawn and I waited around for the results. Since I am an employee of the small hospital, we all know each other and I usually get the results before the doc does. But not this time. Tiffany said the machine messed up and that she would need to run the test again. Little did I know, she already knew what the doctor was about to tell us.
Briley and I hung around the waiting room watching tv. Dr. Niles poked his head in and asked where Alicia was at. I told him she is at work. He said to have her come up to the hospital because there is something to discuss. Of course my mind starts racing about what might be wrong, but cancer never did cross it. I called Alicia and she arrived at the hospital in a short time. Dr. Niles led us into the CEO's office. Dr. Chu, Dr. Martin, and Larry P.A. also joined us. At this time I'm thinking that this isn't good with all of the docs in here to tell us what they found.
Then Dr. Niles said the words, "Briley has leukemia". Alicia immediately started crying. I was speechless. I remember everything being somewhat of a haze. This is not real. My mind is working fast now. Everything in the room is blurred. Dr. Niles said that we must get to Cooks quickly and that they are expecting us. The only other thing I remember is Dr. Chu saying that leukemia is 85-90% curable. I made her repeat the statistic on our way out.
We left the hospital and picked up Bryson at daycare. Alicia and I both called our parents to break the news. I will never forget telling mom the news and her reaction. We got home and started packing bags. It wasn't long before our house filled up with visitors handing us money. News does travel fast in a small town and sometimes it's not a bad thing. At this time, I'm still in a daze. I'm walking around confused. I don't know if I'm going or coming. I can't concentrate on packing bags. I really don't know what leukemia is other than it's not good.
Somehow we packed the bags. I stopped for just a second and looked up leukemia in my A&P book. Good cure rate, cancer of the blood, this is going to change our lives.
Bryson stayed with Nana and off to Ft. Worth we went. I can promise you that this was the longest 2 hour & 15 minute trip that we have ever taken. It was non-stop crying and praying the entire trip. A couple of times I had to slow down and pull over on the shoulder until I could regain myself. But then, that's one of the three times that I really believe God spoke through Briley. Out of the blue, Briley said, "Stop crying, it's going to be o.k.".
After arriving at Cooks, I knew that this was serious when we took Briley through the Ambulance ER entrance and they quickly whisked us away to a room. No waiting for us. After vitals, IV, checking in, we finally made it to our home for the next month and a half on the 3rd floor. It was 11:00pm by now. Briley's doctor was there waiting on us! She had already looked at Briley's cells under a microscope and determined what type of leukemia it probably was and confirmed the high cure rates that we were told earlier in the day. However, further testing would be needed. Dr. Vallance stayed in our room for as long as we had questions to ask. Our nurse that night was a God send also. Her son was a pediatric cancer survivor. She truly made our first night in the hospital a little better and somewhat put our minds at ease, but the reality of the situation had not sank in yet.
Monday, January 9, 2012
There's not just a whole lot new to report. Briley had a CBC done last week and her ANC is still hovering around 2,000. She's had a bad cough and runny nose for the past week, but thankfully no fever. She will have another CBC done this Thursday to see how her bone marrow is responding since restarting the chemo. Her next appointment is scheduled for the 26th of this month. She will have a LP with chemo, vincristine at clinic and start the 5 days of steroids (joy). Hopefully her counts will stabilize with this new chemo dosing.
It's hard to believe it's been a almost a year since she was diagnosed (seems longer). I plan to make a post in the next few days reflecting on this past year and how much our lives have changed.
P.S. This is a picture from this past October. I was trying to figure out how to post pictures. I'll put a more recent one up soon. She has much more hair now!