We are still at the lovely PCMC Hotel (Primary Children's Medical Center). 3 weeks, but who's counting? I AM!!! Kristen's ANC hit big zero last Saturday. We are still waiting for count recovery. She had 2 units of blood and 3 bags of platelets during the past week. She had a fever on Thursday night so of course she is now on major anti-biotics. It is hard to guess when her counts will recover. It could be any day or it could be another week to 10 days. The funniest thing...Kristen is not hooked to her IV pole as she is drinking enough, so she is free to roam the room. I get nervous when she does cause I always think she is going to fall or even worse try to escape. every once in a while I need to leave the room to... oh I don't know...run to the ladies room, or go buy a pepsi or get something for Kristen. Last night I went down to get her some milk. I made her promise she wouldn't get out of bed. So I ran fast and when i got back her bed was empty. First my heart stops, then I look in the bathroom...There she is sitting on the toilet eating my banana, and wearing her huge lamb slippers and when I said KRISTEN! She smiled and flipped her feet at me and said, Baa, Baa! That girl hasn't lost her spunk. This morning Dr. Lemons came in to check on Kristen. He is the head oncologist and well he is pretty much amazing. He was here 18 years ago when Kristen had leukemia the first time. He said she looks great and then he continued, "She is remarkable, I'm amazed at how well she has done." This is good coming from him. I'm feeling pretty good as far as Kristen has responded to the chemo. Things look good for her. But it still doesn't change the fact that we have about 6-8 weeks to go until the treatment is done. I have learned that things change fast. One minute we are fine and within an hour we can be in ICU fighting for life. The cancer might be under control, but the treatments are hard on her. I compare it to being hit by a truck. So we will continue to take things one day at a time. Even when treatments are finally done, there is always the chance for relapse. This never seems to leave my mind. We will treasure Kristen and know that her being with us is a blessing. She is the light of our lives! Say a little prayer for her.
I created this blog when my sweet little girl, Kristen, was diagnosed with cancer, for the third time. After fighting for almost 3 years Kristen was called home to that same God who gave her life. I've contemplated on many occasions rather I should quit this blog or not. Each time I am inspired that I should not. One of my favorite quotes comes from Neal A. Maxwell- "Those who "plow in hope" not only understand the law of the harvest but they also understand what growing seasons are all about. True, those with genuine hope may see their proximate circumstances shaken like a kaleidoscope at times, yet with the "Eye of faith" they still see divine design." Kristen blessed lives and continues to do so. Her light continues to shine. As for me, I continue to "plow in hope" knowing well that Kristen is mine for eternity. Families can be together forever! This I know. Our family continues to live and to love and this is our story...
Friday, January 23, 2009
It is so sad! Kristen sits over there in her bed and kinda does a little cry and says, "I wanna go home!" Then I have to crawl into her bed and cuddle with her and tell her, "Kristen, we still need some more medicine, we can't go yet." Then she is fine for a little while, then we start all over again. It makes it hard cause Kristen can't leave her hospital room if her ANC is below 500. It's always below 500! So she can't even go out for a walk. Yesterday my niece, Heidi brought her girls in to visit Kristen. Kristen loves visitors! Heidi almost cried as she told Kristen what an example of bravery she is to her. The nurses tell me all the time that the pediatric cancer patients are so amazing. They are all brave and so full of hope. If Kristen could talk better I am sure she would tell you that she is going to beat this cancer. Kristen just can't wait till our days of spending months in the hospital are over. She so wants to get back to her old life. She wants things to be normal again. I really miss my kids! It is hard not being home for Ryan when he wakes up in the morning and when he comes home from school. I miss making sure all the kids are in bed and tucking them in. I miss seeing my married kids and the grandkids. I am probably losing status of favorite Grandma! I can't believe I'm about to say this... But I miss making dinner every night for my family and (Hurry bite my tongue!) I miss cleaning my house! I miss doing laundry! K I'll stop whining and feeling sorry for myself. Kristen and I are going to bed...Say a little prayer for her!
Thursday, January 22, 2009
Yip, I can see it! Kristen has peach fuzz all over her head. Of course it is blonde so you have to get at an angle to see it. Her hair is coming back! I do realize that she just had extra high doses of chemo which of course, one of the side effects is hair loss so if I notice little nubbies on her pillow then I'll know it is again falling out. But it is nice to see that things are working like they should. We finished chemo on Sunday and it is now thursday and her counts still haven't hit 0. I think it is going to be a while. So we will be here for another ????? Who knows? Two days ago Kristen had a bloody nose and of course her platlets were low so she had a transfusion. Her eyes started turning red, which is also a side effect of the chemo, so she went back on eye drops every three hours. That is really great in the middle of the night, you just fall asleep and it is time for something else...vitals...bathroom...eyedrops... and then there is the lovely beeping coming from the IV pole. Great times
Sunday, January 18, 2009
Yeah round 4 is done!!! Kristen finished her chemo this morning. She was receiving high doses so we are happy to be done. Now we wait...wait...and wait some more. First we wait for counts to go down then we wait for them to go up then we can go home for a minute. Since she also received high doses last weekend she is already coming down. I am planning on 3 to 4 weeks, that is, if Kristen does not get a fever or something else. Kristen is already begging to go home so I think this is going to be a long 3-4 weeks.
Wednesday, January 14, 2009
Kristen might have a strand or two of hair left on her head. I think i can see maybe 3 little eyebrow hairs left. She is so cute! She is a girl of ROUTINE! Every morning (The ones when we are home from the hospital) she puts on her make-up, brushes her teeth and all the stuff girls do. Today I was watching her and she sprayed 'No more tangles' on her bald little head. It ran down her face...but she didn't seem to mind. She got the brush and brushed away at her little head. She loves to wear hats and bows. Her sister, Katy makes the cutest bows in town! And of course Kristen has many. She has these cute little stretchy headbands and the bows are detachable. They are amazing! We were able to come home from the hospital yesterday. We have to go back on Friday to get the second half our her treatment. We will probably be there for 3-4 weeks. I am NOT looking forward to it. Kristen and I love sleeping home in our cozy beds. Or I should say bed...Richard has surrendered his bed to Kristen. We moved her bed in our room and now Richard sleeps in Kristen's bed and Kristen sleeps with me. Sometimes at night I have to gently put my hand on her back to make sure she is still breathing. I've got to admit it is nice to have the privacy of my own bathroom and not the public one at the hospital. I am thankful for my own shower! It's funny how you miss things like your own bathtub. Don't get me wrong, It is wonderful that the hospital has a parent shower and laundry room and a fold out chair for me to sleep on...It just isn't quite the same. I am thankful that I can stay with Kristen in her room. Say a little prayer for her!
Sunday, January 11, 2009
Kristen has been amazing through all this! She truly is an angel. She is our princess! When she was born I remember Richard saying that she is a blessing to our family and that she will help us keep our feet on the ground and help us to always remember what is important. Kristen is not here to be tested like all of us, she is here to do the testing. She already has her place in Heaven. It is hard for me to understand why she has to suffer. I know that she possibly made this decision before she came here. But it still doesn't make sense that someone like has to suffer so much. I know that she has been blessed these pass few months. I know that there are angels watching over her (because she tells me "The angels made me better!"). I also know that she is a fighter and she does not want to die! I know this because she told me a few months ago, "I don't wanna Die!" She has done some things the past few months that I thought she could never do again in her life. She remembers the last 2 time she had leukemia and she never wanted to go through it again. I know it is through many prayers that she has been able to do the hard things that she has done. Just being here in the hospital and going through all the treatments, the surgeries, the tests and laying in that bed for 3 to 6 weeks at a time has been amazing. She doesn't like it but somehow she has been able to do it with dignity. She is a beautiful little lady! Rubbing her little bald head is one of my favorite things to do. And one of her favorite things to do is to stick her tongue out at me. Yes, that's right, she blames me for the bad stuff and I don't mind taking the blame. She still wants me with her 24/7 and i feel it a privilege to take care of her.
But...if the truth were know,
she is taking care of me!
We are back in the hospital. We arrived Friday for another round of chemotherapy. In my last post I was complaining about the awful nose biopsy Kristen had. to make it short, she had to be on oxygen for a day and a half, but mostly because when they did the biopsy she started with an awful bloody nose, to get it to stop they had to stuff her nose with cotton stuff. It dissolved on it's own after a few days. that was a pretty bad day! Kristen was home for over 2 weeks this time. I knew the longer we stayed home the harder it was going to be to get her back to the hospital. She loves to be Home! Richard and his dad gave her a blessing the morning before we came back and I said a few prayers of my own that she would be understanding and manageable. She was a little slow getting ready and we were an hour late, but she put on her coat (with Kamie's help) and she seriously walked right out the front door. I know my prayers were answered that day. We went to clinic Wednesday before we were supposed to be back. Kristen saw Dr. Afifi, I have decided that she is one of my fav doctors in the clinic. She is from Egypt and she is amazing. She was going over Kristen's chart getting ready to make the plans for our admission. She noticed that Kristen has already had quite a bit of one of the chemo drugs. It is a drug that causes permanent heart damage so there is a lifetime limit of the drug. Since this is Kristen's 3rd time having leukemia, Dr. Afifi checked and Kristen hit her limit in December. She decided to skip round 4 of chemo and go to round 5. She said during this round of treatment the doctors would get together and decide if round 4 needed to be made up. I thought the doses of chemo in round 3 were scary! She was getting 12 times the dose she had in received in round 1 and 2. Well now Guess what????she is getting 30 times the dose! She got it for 2 days every 12 hours and it takes 3 hours to go in. This morning at 6am they started the last dose. Now she has 5 day rest and then they will do it all over again. There is a chance they will let us go home for a day or 2. She did have a fever in the night so we are waiting to see if she gets another. If she doesn't have a fever by about 5 or 6 they will let us go! After the chemo is started again on Friday, we will probably be here for about a month. Pray for her!