While we were at the hospital, our doctor gave us the test results of the bone marrow aspirate. There is no sign of leukemia in her bone marrow, so she is in remission. That is great news! Now, like I said earlier in the blog, we just have to continue treatment as if she still has leukemia or it will come back 100% of the time. So although that is wonderful news, it doesn't mean she gets to stop all the treatment, but it DOES mean that the chemo is working great! Yay! And she is so happy again today, AND she only woke up twice last night. Things are looking up for us!!!!!!
Sole just left this morning and it was so nice to have her here to help. It got me thinking about all the people in my life that have been there for this to support us in some way, and the only term I could find to describe you is heroes. Because you have swooped in to save us while we have been suffering. If you have come to help us with dinners or cleaning, brought gifts for our kids, helped tend our kids, donated money or sent a card, sent us a package, called us to check in, posted an encouraging message on our blog (some of you we have never even met!), said a prayer for our family, sent an e-mail to tell us you are thinking of us, sacrificed time and money to help us, you are my heroes. There are no words to thank you, because thank you doesn't even begin to cover it. Many of you will not even get a much deserved thank-you card because I would be writing cards all day long, there have been so many to thank, and taking care of my family has consumed all of our time lately. It's like we have these angels around us constantly to strengthen us when we otherwise would have fallen, and I KNOW without a doubt that the Lord sends other people in answer to our prayers. And you all (you should all know who you are!) are the answers to our prayers. I only hope that we can someday repay each of you somehow, that the day will come when you will need us and we can return your support and love. How would we make it through this without you? You have eased so much of our pain and you are all our heroes! A million thanks (for lack of a better word) to you all.
Well, they let us go home this afternoon because her fever was gone and the doctor said we were okay to monitor her and administer the IV antibiotics from home until the culture comes back. They will call us if there is an infection and we would have to go back, but they suspect it was just a little virus, which would cause her white blood cells to go down, and they aren't expecting any infections. So tonight we get to learn how to give her antibiotics through her IV. We are little by little being made into nurses!
She probably won't be able to start her chemo next week because her ANC is so low, they don't expect it to get up to 750 by Monday. The home health nurse will come by Sunday and do some blood draws and let us know where her counts are.
Brinley is feeling SOOO much better. It's been such a great two days, minus the hospital. She was being silly and laughing and smiling. Words can't describe how happy we are to have a little piece of her back. Every time she smiles or laughs I feel like my heart will explode! It's like for the last month, one of my favorite parts of Brinley, part of what defines her, had been taken away from her. And she is starting to get it back. It makes me so happy. She was even smiling at the doctor! She said that is the first time she has seen her smile since she's met her, and she was excited to see her happy too. These two days have been a blessing and I have loved and appreciated every single smile I have been able to witness. Lucky us!
Just a quick post because it's late, but I wanted to let everyone know that Brinley was admitted to the hospital last night because she was having a low-grade fever, and when we took her in to the ER they did her blood counts and her ANC had dropped from 500 to 200. It sounds like they are concerned about a virus. Since she skipped the chemo this week, they expected that number to be on the rise. It had been on it's way up and they just want to keep her to see why the sudden drop. They don't seem too alarmed, so I expect it won't be a long stay, they are giving her antibiotics right now to fight it in case it is some kind of a virus. The interesting thing is today has been the happiest she has been all month, she was laughing and talking in the hospital, so I'm not TOO worried yet, but I'll keep everyone posted. I think the standard is at least 24 hours in the hospital for monitoring, so we'll be there until tomorrow night (Friday) for sure, depending on what they find out. I came home for the night to be with the kids, and David stayed with Brinley. Please say a prayer for her today that all will be well! Thanks!
Sorry for the lack of update yesterday, there wasn't really much to update! Brinley is still feeling sick, unfortunately, but I did get a few more smiles than usual, so hopefully that is a sign that she will start feeling better soon. She is also still eating us out of house and home. She discovered a love for boiled eggs and has gone through about 18 eggs in 2 days. So we are hoping that being off the steroids is going to slow her down soon. It is hard to keep up with her cravings!
Please pray that Brinley will start sleeping soon. We have been praying for it for some time now, but we figure maybe more prayers will help! She is still up all night and it is getting so difficult to function for both David and I, not to mention how tired and grouchy Brinley is during the day. We are struggling to stay awake to take care of everyone's needs, and David has to stay awake at work too! We feel like if we could just get a good night's sleep, it would make this challenge a little more bearable. Taylor has had to get herself off to school for a couple weeks now, making her own lunch and waking us up to sign papers, and seeing herself out the door. It is so sad to me, but we are just so tired. Sleep is so important!!!! It sounds like something so simple, but it can make such a big difference. We appreciate your prayers! They really do help!
David's sister Sole is here for a few days from Las Vegas to help out. I am so happy to have her here. I can't believe how much help we have needed, it's amazing how many people have jumped in to help us. I don't know what we would do without it.
Finally, we are on the last day of induction. We are still waiting for the bone marrow aspirate results, I'll post it when I get them. Brinley is so grouchy today. I guess because she got 5 hours of sleep last night and hasn't napped. I really hope it's the steroids keeping her up all night and things will settle down in the next couple nights. I am hoping to get some energy back once I start sleeping all night again. I feel exhausted all the time right now, which makes for quite a messy house (not to mention the time it takes taking care of Brinley, even if I HAD energy, I would have a messy house!).
Brinley is still not even attempting to walk. When I try to stand her up she just makes her legs like jello and cries. So I'm not pushing it. The oncologist said that the steroids can cause your muscles to deteriorate sometimes, and they see a lot of kids that stop walking altogether during induction. That combined with her having a broken leg and a cast on, she was not at all surprised that she isn't walking. She said after the steroids are finished, if she still won't try it we will get her started with a physical therapist.
I can't believe how different she looks to me. Her cheeks and stomach are all puffy from the steroids, and her legs look misshapen from not using them for so long. I look at pictures of her before and can't believe it's the same child. She just looks so sick to me. I am looking forward to this next phase to see if we get a little of her back.
We just got back from clinic so here is an update. She gets a break from the vincristine today, (the chemo they put through her tube each week) and will get to be finished with the steroids in 2 more days. Hopefully we'll all still be alive in 2 more days! haha. So we are hoping that once the steroids are done, she will be a bit happier since she didn't have the vincristine. We'll see. It was a rough visit because she had to fast for the bone marrow aspirate and lumbar puncture (spinal tap) to put chemo in her spine. We gave her some benadryl hoping that would get her through the night without needing any food, but it only lasted until 4. So she woke up at 4:00 wanting to eat, and we couldn't give her anything. She literally screamed from that point until we got to clinic. It was awful, we felt so bad. She just kept asking for different foods, popcorn, cereal, crackers, anything she could think of that we might give her, and the answer was no, no, no, each time. Poor girl, she was starving. She's used to eating all night long! Then we had to get through her clinic appt before getting the tests done. They were running behind in the RTU, so she didn't get sedated until 11:00. It was a nightmare to not let her eat or drink for that long. When she was finally sedated and we were waiting in the hall, I heard one of the doctors say "poor little steroid girl having to starve for this long!" It made us chuckle, he knows how these steroid kids are!
Her counts looked good, except for her ANC, which was at 500. That is better than last week, anything under 500 is in the danger zone for infection, so 500 is right on the line. So no church or store, but she can go play outside (not that she would play right now) and be around people we know aren't sick. That number has to come up by next week or we will not be able to start the next phase. It needs to be above 750 to start Consolidation. So we are pretty much done with Induction phase!!!! Just the 2 more days of steroids! We will find out the results of the bone marrow aspirate in the next couple days, and hopefully she will be in remission and ready to move on.
She also had to get an x-ray of her stomach, because she has been crying a lot that her stomach hurts, and we thought she was constipated. The doc said that sometimes we you are really constipated, you can get diarrhea, which would explain the diarrhea the other day. Sure enough, she said that Brinley is FULL of poop. So we need to up her dose of mirilax to try to get that out of her. Her stomach is HUGE! She said the vincristine causes constipation, so we will probably be dealing with it for a while. One of the many lovely side effects of chemo.
I can't tell you how happy we are to be almost through with induction. I honestly don't know how we have survived this month, it has been absolutely overwhelming. I guess we survived with all the help we have had and all the prayers that have been said for us. We would not have made it without that. I have a prayer in my heart every single day that the Lord will get us through that day, even that hour sometimes. And the next day, I pray for the Lord to get us through that day. That's the only way we can survive this, to get through each day and feel accomplishment for making it through that day. Looking at the long-term picture is too much right now. Two more days of steroids, two more days, two more days........
If you read Ali's comment the other day, you know that September is Childhood Cancer Awareness Month, and there was a great article/pictures posted in the Boston Globe.
Let me just explain a little about yesterday. I really want to be honest with my feelings, while I read other people's blogs who have gone through this, my favorite posts are the ones when they are feeling weak and discouraged, because it makes me feel like I am not alone in my feelings. I thought about deleting it right after I wrote it, but decided to just let it be. It was a bad day and we are wearing down, but we will make it through. Someday someone going through this may read our blog and see that it okay to have bad days where you just say "this sucks". Because it does. No matter how positive you may feel, it does. That said, all I really want from people is to say that feeling that is okay. There aren't magic words that will take away those feelings, they are part of this process. I promise if you just say yes, Kristin, this sucks, that will be enough. And we will move on and fight this battle, wage the war the best we know how. And when it is over, we'll look back and see what we learned from it.
As for Brinley, last night she got diarrhea for the second night in a row, and was having a lot of stomach pain, so we decided to call the oncologist. She said we better bring her in to get checked out, so David took her to the emergency room at 11 last night. Everything was fine, here blood counts were low, but that is expected with a child during chemo, so no surprise there. She was dehydrated, so they gave her an IV for a bit, but there were no infections in her blood, so she was okay to go home. Hopefully there won't be any more today. After being up at the ER most of the night, she was wide awake at 6:30 this morning! So my mom got up and took care of her to let us get some much needed sleep. She was sure here on a good weekend, it had been a tough one and I am glad she is here. She leaves for Las Vegas tomorrow :(
Brinley's Cancer Fighting Friends
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