It has been so long since I've written an update! It seems like we are busier than ever and I get so tired at the end of the day that I just keep thinking- I'll write tomorrow. Brooklyn has started preschool! I was so happy after the first 'meet the teacher' day when we left and she said, "I love my teachers and I love my class." Our preschool director is wonderful and put a lot of the same kids together in class again and they also have one of their same teachers from last year. I think that it is great for Brooklyn because she wasn't always excited to go to school last year, and missed a lot of days when she wasn't feeling well, so the similarly of her school environment this year is good for her. Her blood counts have remained good, even with her being on the highest dosages of all of her medications. It proves once again how strong her body is and how blessed we are that she is fighting so hard to stay healthy. This last month has been a long one though. I was noticing the effects that this disease and treatment process has had on our whole family. It seems like we have been doing this for so long, and I know we are close to being done (she will receive treatment through April or May) but we are all kind of run down from the last year and a half. It makes me super thankful that the treatment plan for girls is shorter than the plan for boys- boys have to do it all for an additional year! Ugh. This last round of steroids was a tough week in our house. Whenever Brooklyn had to take them, I can tell that she doesn't feel very well the whole week. This last time, instead of eating more than normal (as you would expect from steroids), she ate almost nothing at all. I don't know why that happened- if she was just feeling so bad that she didn't want to eat anything, or nothing sounded good or what. It was hard because I could tell she felt terrible and I think eating nothing just compounded that. I kept trying to convince her to eat something, but she just didn't want to. She fell asleep on the couch two afternoons and was really crabby to everyone all week. She will say mean things to us and it's hard to not get upset about it after she does it over and over. I know she doesn't mean to be mean, but it's a challenge trying to balance disciplining her for her actions and deciding what to let go because we know she's feeling so bad. What has added to the challenge is that Kelsey has started mimicking the bad things that Brooklyn says. That puts me in an even harder situation because I have to reprimand Kelsey for saying mean things, but I know she is learning it all from watching Brooklyn. We have tried to use Kelsey's bad behavior as an example to Brookie of why she can't be mean to others, so hopefully they will both learn and only happy words will be said in our house. :) I can also see the drain on the other kids. It was Braden's birthday a couple weeks ago and we had our family party the night of his birthday. It was extra special because my aunt and uncle were visiting from Montana so they got to be here with us. Part of one of Braden's gifts was some bubble gum. It was one of the nights that Brooklyn didn't want to eat anything and she started screaming and crying that all she wanted was some of Braden's gum. We have been trying to get her to just talk or ask for things that she wants without freaking out, but it's a hard lesson for her to learn. Braden finally walked over to her and handed her the roll of bubble tape. It was so sweet and so mature of him. I bought him a new pack of gum the next day and told him how proud I was of him for giving his present to her, and he said, "it's just gum mom." I know it's not a big thing, and I'm so happy that our kids are good at sharing :) but I hope that they don't develop any kind of jealousy or bitterness towards Brooklyn because she so often gets her way. I don't think they will because they really seem to rally together as a team whenever she gets in trouble. I told her that if she didn't act better yesterday, she wouldn't get to help us decorate for Halloween, so Braden and Kayla piped up and said, "then I'm not decorating either." I am so happy that they do stand up for eachother when they feel like they need to. I started crying this morning because it can be so hard when she changes her mind so frequently. Before we left for school, Brooklyn wanted Kix, then two minutes later she didn't want any. So I gave her a muffin that I know she likes and had eaten the night before, and she started screaming that she didn't want that, she wanted Kix in a baggie. I started thinking, how am I going to make her act better? I try and try to talk to her about the right way to act and talk, but she still acts out. I keep thinking that when she is done with her treatment and doesn't have to take medication every single day, everything will be better. She'll instantly be kind and loving because she will feel better. But I just came to the realization that that isn't going to happen. It's similar to her and eating. I know the chemo can change the taste of food for her, but I can't imagine that all of a sudden when she's done, she is going to want to eat vegetables and the dinner I am serving every night. Now, that can be said of lots of kids, I'm aware that most kids are picky eaters, and that is something that we can work on, but we will have to work on her behavior as well. I am in no way trying to sound like a sob story. I know how amazingly blessed we are to have the support from our family and so many people are praying for Brooklyn and our family. And, there is a light at the end of the tunnel. She is being cured and she will be able to grow up and live a normal life. I was thinking today about her doctor telling us that 30 years ago, the cure rate for ALL was like 5%. Today it is closer to 95%. I am so thankful for the simple fact that we live at this time, when our little girl can be cured. And I know that we have never been alone. We sang a song in church a few weeks ago that said, "Never once did I ever walk alone. Never once did You leave us on our own. You are faithful, God you are faithful." It is the perfect chorus to describe our walk the last year and nine months. We are blessed every day and I am so thankful for that. And Brooklyn still lights up a room with her smile and her heart. She is a joy, even through all her tough days.
Hi Kristin! I feel you honey. I hope it is a little bit of a relief to share your worries in this blog. Truly, you are not alone...and not just in the spiritual sense. Every parent shares your angst...even those of us who have never had the challenge of a baby with A.L.L.! Four energetic, smart, loving kids is enough to drain the energy of any mom, even YOU who are SUPER MOM! Even without A.L.L. and intense and painful ongoing medical treatments, it is SO HARD to know how firmly to come down on this or that behavior--which battles to pick and when! And of course it is true that all this chemestry that is healing Brookie is also changing moods/behavior/demeanor in the moment. I know that you are striking the best balance possible--disciplining and also ignoring what you can. Your four GREAT KIDS are all handling this with style and grace, as they simply follow you and Mike. It has been a long haul, but thank heavens the light is at the end of the tunnel. It really is miraculous that this scary disease is so very treatable now. The fact that the protocal for cure is so specific that boys have an extra year is even more impressive; SO grateful to all the researchers who have contributed to the CURE!
ReplyDeleteI do understand how it is harder to discipline your little "patient". Maddie found a TINY orphan kitten last May, only weighed 1/2 pound and we had to bottle feed her. Long story short, after several weeks and an MRI the vet found a lesion on her spine from a precious injury. He did a cosmic amazing 3 hour surgery and then Sadie had to "rehab" for around 12 weeks (confined at home in a crate.) Anyway, it was hard to be COMPLIANT and keep her crated as she started feeling better and better, but we knew it was the only way she would be able to heal properly! Now that she is running around like a bullet, perfectly healed...well...IT IS HARD FOR ME TO DISCIPLINE HER! and she's just a CAT! But I can barely bring myself to shoo her off the counters or anything because of all that she went thru. SO I HEAR YOU HONEY!
We love you all so very very much!!