Briley will go back to the hospital tomorrow for one final round of chemo for this phase and also get a CBC to determine her counts for possible transfusions and isolation. I hope we'll get to come home tomorrow for a few days.
Saturday, July 30, 2011
All is going very well. Briley is doing very good. She's very active right now. It's been such a blessing as we were expecting her to stay sick these past 12 days. We went over to the hospital earlier today for chemo treatment in which all went well. However, Alicia lost her cell phone. This should be to no surprise to those of y'all that know her very well. So, we had to go to a Verizon store and get her another one.
Friday, July 29, 2011
There's not a whole lot to report today. Briley had an 11:00 appointment at clinic today for more chemo. Before we left the RMH, Briley wanted all of us to wear our Texas Rangers t-shirts to clinic, so we did. We had several comments about being big ranger fans. We are and we were given an autographed CJ Wilson ranger hat! We barely missed CJ at the clinic yesterday so I guess they felt sorry for us and came up with a hat. I have pictures posted on facebook of Briley wearing the hat.
Briley was in a very good mood at clinic and played with the other kids and miss Amy, her favorite Child Life Specialist who has been with Briley since she was diagnosed. After clinic, we decided it would be a good idea to get Briley out a bit before her counts drop to the point of isolation. So we headed north on 35 to the Olive Garden for a late lunch and then over to my favorite store, Cabelas! Briley loved the aquarium and found a couple of toys to play with. Then she stoled my heart. She picked out a crankbait for her Tinker Bell fishing pole! She even picked the color I would have gotten! I was a proud daddy! Then it was the 5:00 friday traffic getting back. I'm glad we don't live here.
Anyway, she will get her chemo tomorrow at the hospital. I guess Sunday is her big day when she will get a CBC along with her chemo. Basically the CBC will decide when she will come back for isolation and also when she will need the transfusions if not needed on Sunday. We'll wait and see.
Thursday, July 28, 2011
We are now at the Ronald McDonald House for the next 3 days (at least). Briley had a scheduled appointment today for blood work and chemo treatment. Her ANC, hemoglobin, and platelet counts all dropped a good bit since last Thursday. This is to be expected. Her counts will continue to drop to the point that she will need blood and platelet transfusions at some point next week. Also, her ANC will bottom out again forcing us to keep her in Ft. Worth a week or two until it starts to rise again. She will receive her chemo treatment tomorrow, Saturday, and Sunday. They will also do another CBC on Sunday to see where her counts are and then determine what day she will come in for the possible transfusions and isolation.
Briley is still feeling pretty good and loves staying at the RMH. I think she likes staying here because of all the good food that is always present. Bryson had a little bit of a rough go this morning when we left. He now realizes that packing suitcases and when Nana or maw maw are there to get him that he's not going to see momma or Briley for a few days. He did not want us to leave, but I think Nana spoiled him today at Wichita.
Thank you for following along.
Monday, July 25, 2011
Everyone is home now. Briley and Bryson gave each other a big hug when she walked through the door. 10 minutes later, they were fighting like brother and sisters do. It was good to see the two go after it again!
Briley has been doing very well. Much better than we expected. She has been a little nauseated at night and in the morning. During the day, she has been playing and laughing and feeling good! Kids are so resilient! We are very happy with her activity level at this point. I think that she won't let little brother out do her!
Briley is on home chemo for 14 straight days. We will go back to Cooks on Thursday for another 4 day treatment. Her port stays access during the 4 days, so it's a little tricky not getting it wet during bath time. I hope that I get to stay with her and Alicia the entire time she's there. Alicia and I also would like to place ourselves on the National Bone Marrow Donor Registry during our time at Cooks. I think that's the least we can do to help out others who needs a life saving marrow transplant. I encourage everyone to at least take a look and see what donating marrow is all about. www.marrow.org. Thanks!
Sunday, July 24, 2011
I'm sorry that I haven't blogged more during this treatment. I'll sum up the past 3 days now. Briley had her big day on Thursday, see post below. Since then, she has been going in to the clinic or hospital for a round of chemo. She is also taking an oral chemo for 14 straight days. She has been nauseated and some vomiting every day, especially in the mornings. Once she gets the zofran down, then she is able to eat and drink and she will play a little. You can tell she doesn't feel good at all. However, we are very thankful that she was able to start this phase of treatment. I cannot say that enough!
Her hair started to come back, but it will fall out again. I know she will be disappointed in that. Dan came and picked me up Friday so I could get back to town and set up the slide and bouncer that afternoon for the Red Springs Baptist Church. I also worked yesterday and today. Alicia and Briley will be coming home today after her treatment at the hospital. She will need to stay on nausea meds for a few days. We will go back to Ft. Worth on Thursday for another 4 day treatment, but she won't have anything done like this past Thursday. The doc said in a week or two after the next treatment that her counts will once again drop and to expect to stay in Ft. Worth for a week or two. That's fine, she will be done with the "hard" chemo at that point. The logistics of that stay will be a nightmare as that's going to be around the time school starts back up. We will cross that bridge when we get there, as we have done multiple times before.
Here is something that is awesome. I believe God can and does sometimes speak through children. But you have to listen and know when he does. We have been praying with Briley that her counts would be high enough to start treatment, but if not, her body is in God's hands and that He knows best. We have prayed weeks for this. The night before her treatment started, Alicia started praying with Briley that she would meet counts. Out of the blue, Briley said, "God just said that my counts would be high enough tomorrow". And they were. Awesome!!!!!
Friday, July 22, 2011
We drove down to Ft. Worth yesterday afternoon for Briley's appointment this morning. I have been a nervous wreck this past week. Usually I'm laid back and never say a whole lot, but this past week got to me not knowing what Briley's counts were going to be today.
Needless to say, Briley's ANC was 1100! This was such exciting news for us that the nurses and doctors were giving us high fives! Praise the Lord! What a relief! Moving forward! Lets get it done! Yay!
After Briley's blood work came back, she went to the SPA (special procedures area) and got a lumbar puncture with chemo. I was frighten when I walked into the recovery room and saw Briley wearing an oxygen mask. I thought that this couldn't be good. However, Briley wanted to keep the mask and was smelling it when I walked in because, "it smells like bananas"! (she gets to choose a flavor of gas to put her to sleep before her procedure). We all had a good laugh!
After the procedure, we went back to the clinic for more chemo. She was finally done 11 hours after we arrived. It was a long day, but well worth it. I'm not complaining. We are very happy to start this part of the phase.
We are staying in a motel room since the RMH is full. Briley is doing good, although she is not feeling her best now. She will have chemo treatments every day until Sunday. We have got to get through the next month and then everything will become so much easier. This delay has been hard for all of us but God knows when her body is ready. We gave her up to Him when she was baptized. He will take care of her. He will guide us and provide for us. He is the Lord our God, maker of heaven and earth. His kingdom will have no end. Thank you!
Wednesday, July 13, 2011
Briley went in to the Seymour Hospital this morning for blood check. Her CBC came came back with her ANC still to low to start the next round. It actually dropped again to 280. Her hemoglobin and platelets looked good.
This is extremely disappointing and frustrating. Most kids are delayed 2-3 weeks and some are delayed 4 weeks. I don't like being in the "some" category. Briley will have to wait another week.
We will definitely go back to Cooks next Thursday. If she meets counts, then shi will proceed with the treatment plan. If she doesn't meet counts, then she will have a bone marrow aspirate to determine if the leukemia has relapsed.
Her treatment has gone according to plan up to this point. Now it's one delay after another. I know most other kids are delayed in the consolidation phase and Briley was not, but this has really brought our spirits down.
Our faith will get us through. We will pray that she will meet counts next week. I really believe that the chemo has finally caught up with her and that it will take a little time to overcome it. We appreciate every one's concerns today and your continued prayers.
Thursday, July 7, 2011
Briley had a 7:15 appointment this morning at the clinic. We and even the nurses were thinking that Briley would meet counts this time considering how much her ANC jumped last week. So we all agreed that her port would be accessed for the blood draw and it would save her from being poked in the arm. So that's what was done. Well...... then the cbc results came back. Her ANC was too low to start the next part. She dropped from 650 last week to 430 today. We were surprised and very disappointed by this. However, we were reassured by the doctor that this is very normal and that we will try again next week. Thankfully, we will get the cbc done at the Seymour Hospital next week before traveling all the way to Ft. Worth just to find out her counts are to low.
It's very disappointing that she didn't meet counts for a few reasons. Main reason is that we are simply ready to get through this phase. Also, it's difficult to juggle my work schedule, especially already being short handed. I'm thankful that I have some wonderful co-workers that will step up when they need to (just don't tell them I said that). Then of course all of the packing and unpacking. Gas money down there and back. Plus we've got to eat. The elks lodge in Wichita payed for the hotel last night and even though we stayed there, it seems like it was wasted since she didn't get her treatments. We appreciate them so much!
All of this could be prevented by doing a simple cbc at our hospital, which we will finally get to do next week. I know that God has a plan and there is a reason that we do not understand. Maybe He thought that Briley needed to wait another week for what ever reason. To be honest, we are doing good if this is all we have to be disappointed about. It really seems small in the big picture of things. So, we'll try again next week! At least Briley will get to ride a firetruck in the rodeo parade!
Wednesday, July 6, 2011
We drove to Ft. Worth this afternoon to stay the night for Briley's early appointment in the morning. All of the RMH rooms were full, so the social worker set us up at the Hilton downtown Ft. Worth.
As usual, Briley is extremely excited to be staying in a motel. It's a nice place, but we miss the RMH. The RMH is convenient since the clinic is right across the street and there is always food available in the kitchen and also a laundry room is right around the corner. But it is sure nice having a tv in the hotel.
We got here a little before 9:00. I knew that the hotel had a restaurant in it, so we decided to hold off on supper until we got here. That was a little bit of a mistake. The eatery downstairs is Ruth's Chris Steak House. Ummm, $50 for a ribeye! To say the least, we ate there and no we didn't have steak. I'm sure they are good, but I can't imagine spending that much on a steak and be disappointed with it (I'm particular when it comes to steaks). I had an excellent halibut and Alicia and Briley had a stuff chicken.
It is time for bed. Tomorrow will be a very long day. She will get blood work done, then off to the SPA for a spinal tap, then back to clinic for a couple of rounds of chemo. Just looking forward to getting this over with.
Monday, July 4, 2011
We want to wish everyone a happy 4th of July! This is the first year that I can remember that we will not have the Hostas firework spectacular at mom & dads house. Due to the drought, Baylor Co. has banned the sale & use of all fireworks. Being on the fire dept., I think it's a good ban.
Briley is doing very good. She's very active and playing like old times. She has a little peach fuzz coming back on her head and has not had a fever. She even got out and went to church! Everything is moving along perfectly right now.
We will go back to the RMH on Wednesday for Briley's appointment Thursday morning. Her counts should be plenty high this time to begin treatment. It's hard to see her get knocked back down, but once she gets through the next couple of weeks, then the treatments will get so much easier! This is the final push before maintenance chemo. We appreciate the get well cards, offers of help, words of support, and prayers during the past couple of weeks. It sure makes it easier to get through this difficult time. Thanks.