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Well, its done. One of our favorite nurses, Ramelle, just took down our last bag of Cyclophosphomide. I sure thought I would be more excited than I am. But it's hard to be too thrilled when Lucy has vomitted too much this morning and is too tired to get out of bed. I'm trying to put things into perspective but I think I'm just a little numb. My friend Amanda said today that it probably wouldn't really hit me until they take her line out, or her hair starts coming back, or she walks in the door of TCA with Mrs. Crystal holding her hand and I have to drive away. Right now, I am just numb.
I know I should be so happy and excited. But I'm not. My chest is tight, my stomach is in knots. Honestly, I am scared to death. I have prayed for peace, and will continue to, but right now it is not coming. I feel like my tiny grasp of control over Lucy's cancer is being ripped from my hands. This is the part where I have to put my words into action. My words of faith and trust. Those things are easy to write about but so hard to put into action. Walking away from this hospital will be one of the hardest things I've ever had to do.
Today Lucy did OT, then school, then PT all back to back. She was exhausted but pushed through. She even had to stop to vomit between her coloring page and writing page. How many children do that in a day? None should have to, that's for sure. She is restless this afternoon and her mouth hurts. We have made it thus far without those nasty mouth sores we were warned about. I am praying hard she doesn't get them now. The vomitting just makes things worse day by day.
Ok..so wow! The last hour has been crazy. The mouth pain just intensified to a point of screaming. It was awful. After codeine, benadryl, morphine and phenergen she is now sleeping. And you know what stinks? I have to wake her up an hour to pee. That is why I can't be excited about that last bad of chemo. It doesn't all just end when they take the bag down. We still have such a long way to go.
On September 1st my baby girl turned 8. In typical Krull style, we had two parties to mark the occasion. One for our family on her actual birthday and then a small birthday party with a few friends at Paint a Piece. For her birthday dinner, she chose spaghetti, ham, bread and strawberry cake.
On September 10th, Ella's BFF Gracen celebrated her 8th birthday. We had a joint party with just a few close friends from church and school. We would have loved to have a huge party and invited all our friends, but this was not the year to do a lot a planning. We needed something quick and easy! The girls had a wonderful time and the staff at Paint and Piece took care of everything. My dear friend Christi made the cookies and cupcakes, which were out of this world! I hope she will have the opportunity to be a full time baker sometime. She would really do well! Her buttercream frosting is the best I've ever had.
Caution: lots of pictures ahead!
The Birthday Girls
Ella and Lucy in the cute outfits my Aunt Judy got them.
Jack loves ice cream!
The birthday group
McKenzie, Jesse, Kaleigh, Andi, Ivy and Riley
Lu and Grandma
And then to round the birthday celebration off, Aunt Cheri sent a scavenger hunt for Ella. It was so much fun and I know we will be doing lots more in the future. Here's the play-by-play action:
And then....TA DA! Beautiful scarf and t-shirt!
As you can tell, Ella had a wonderful birthday and we were blessed to spend so much time with her during Lucy's chemo break. She really is growing up to be such a beautiful, kind and smart young lady. I am so very proud of her.
Well, we all have survived day 2. Today was Cyclophosphomide and Mezna, which means we have started 48 hours of continuous peeing. It will make for a long night, but knowing we are so close to the end makes it more bearable. We had an interesting talk with the doc today. I asked him why the decision was made to go forward with the full dose of Chemo when there was an issue raised about Lucy's ANC being so low. Basically he said that it just came down to the fact that with her high risk cancer she needed all she could get. Wow! That hurt.
Not that we didn't know it and haven't lived it for months, but just hearing it again from a doctor was a painful reminder. After her recent good scans you find the ability to put the worst behind you and look forward to what is to come. The positive part of the conversation was Dr. S's reminder that the reason these MB (medulloblastoma) kids are blasted so hard with high dose chemo 4 cycles in a row is that it works. We are clinging to that tonight.
Lucy has been pretty sick today. Off and on, really. I can tell her body is tired and worn down from 4 cycles of this crap. Tomorrow when they take down her last bag of chemo I think I will cry. Maybe I'll do a happy dance. Maybe I'll do both. You might even hear me shouting "Praise God." Friday after she gets her cells the nurses and other staff on the floor throw her a "No Mo Chemo" party. I think that will be really neat for her.
On a side note, I may not be able to walk tomorrow. I started Day 1 of the Couch to 5k program today. The St. Jude campus served as my training facility. Let me just tell you, if you are going to start running after 7 months of being completely sedentary, a hospital is the best place to start. I really thought I might need oxygen when I was done. It was so bad that when I came back up to the floor and the nurse came to let me in she thought I was in distress. I reassured her I was only trying to fit back into my pre-baby, pre-cancer clothes and that the only way I was going to do it was to just go for it. No easing into anything. Just hit the pavement and start running.
I also got to love on Ella and Jack today. Oh how I miss them so!
Please pray that tomorrow will be a good day for Lucy. It's hard seeing her so sick. You'd think I'd have grown accustomed to it by now, but it never gets easier.
Day one is done. I won't say it was a good day, but it is over. Lucy was pretty sick today after 2 doses of Amifostine. Her blood pressure dropped significantly, causing her to feel miserable and needing a bolus of fluids each time. Around 3pm she finally pooped out and called it quits for the day. She just woke up now for nightly meds, weight check and vitals. After sleeping all day, I am really, really hoping she falls back to sleep easily. Momma and Daddy are tired and could use some sleep, too.
Taken yesterday as we were preparing to go in for Round 4.
And this little guy has been causing some trouble of his own today.
Last Wednesday he and Ella went in for their 1 and 8 year check ups. He received immunizations and we all three received the flu shot. The next morning Jack got sick and Lucy and I had to quarantine ourselves to my parents house while Erik cared for Jack and Ella. After about 12 hours he was better, ruling out any adverse reaction to his immunizations. The doctors assumed we were dealing with a stomach virus. Since then, Jack has had random vomitting and the occasional upset stomach. After he vomitted again today, I started to get worried. Random vomitting was our first sign that something was wrong with Lucy.
I know it was the just the panic of a mother who is currently watching her child fight for her life, but I don't think anyone could blame me. Even our pediatrician, Dr. B, whom I love dearly totally understood. After she talked me off the ledge, we both agreed that Jack was probably having a food adversion or suffering from a food allergy. When Lucy was an infant she tested positively for allergies to corn, soy and all dairy. So....Rice milk it is for the J-Man!
By the way, Jack is in the 50% for weight and 75% for height. Ella, on the other hand, is in the 25% for height and 10% for weight. Besides suffering from a little bit of anxiety, Ella is doing great. She loves the attention of both sets of grandparents and was thrilled to have Grandma and Grandpa back to our house. I'm sure it has nothing to do how spoiled she gets when they are there!
Do you want to help St. Jude or LeBonheur Children's Hosptial? Well.... this post is for you!
1. Donate to either the LeBonheur Children's Research Hospital Pumpkin Run or the St. Jude Marathon. Both hospitals are committed to saving children's lives and my family will forever be indebited to both of them for just that. I have signed up to participate in the LeBonheur 5k and the St. Jude 5k. I'll be walking this year for Lucy and the other children that have become so near and dear to my heart. If you'd like to donate to either, I'm posting the links below:
LeBonheur Pumpkin Run or St. Jude 5k/Marathon. I am close to reaching my goal, but I would be so honored to raise even more. All the money is pooled together to represent Team Lucy and I would love to do far more than I first thought I could.
GO TEAM LUCY!!!
2. My dear friend Laura, along with another lady, has committed to providing all the children at S. Jude with a Scentsy Buddy during the week of Christmas. If you would like to contribute, please go here. or use this link http://abuddyforeverychild2011.wordpress.com/.
Thanks for supporting Lucy, our friends and the other children fighting life threatening illnesses.
Until this moment I have refused to declare this Lucy's "last round." It's just so hard to allow myself to believe this is all going to be over soon. I think I'm afraid to say it out loud, like I might jinx the whole thing or something. But since I don't believe in luck, I guess I should just practice some Faith and trust that God is going to carry us through this 4th and final round.
It didn't help that this morning the doctor came in and said Lucy's ANC had plummeted to 600. Yeserday it was 1700! We knew that she had to be above 1000 to start. He told us that the docs were meeting to determine what to do. There was an option to lower her doses of chemo or not do them at all. We knew that there was a chance we would not get a 4th round. I was sick. Literally, sick to my stomach. Yesterday I was a ball of nerves coming into the hospital and I couldn't quite put my finger on what was bothering me. This morning was the curve ball I was waiting on.
Not much time passed before Dr. P came back in and said they were going forward. Round 4, full dosage. Please join us in praying that this 4th round of high dose chemo will not do irrepairable damage to her bone marrow. That would be a whole new battle she would have to fight.
It's been a long day already. 1:40pm and she has vomitted off and on since 10:00 this morning. She is tired and full of medicine that should make her sleep, but she doesn't. I don't know how she keeps those eyes open, but she does. She gets another dose at 2:00 of the Amifostine. Last dose ever. I hate that stuff. I'll post more as the day goes on.
**Before I update on the Krull family, I have to ask that you stop right now and say a prayer for our dear friend Lanie and her family. Lanie's MRI showed that her cancer has spread. Her parents are now having to make unphatomable decisions about Lanie's future. We have come to love this family and are asbolutely heartbroken for them. This is the evil, evil part of cancer that destroys hopes and dreams. Unfortunately, Lanie will not be the only friend we might lose along the way. Dear God, I pray that we will all be made whole sooner than later in heaven as you have promised. I ask you all to remember Lanie, her parents and the children at St. Jude tomorrow in your churches, Sunday School classes and individual prayers. Lanie and so many other children need a miracle. We are still praying for one in Lucy's life. **
If the good Lord wills, this time tomorrow night we will find ourselves starting the 4th (and prayfully the last) round of chemo. So many emotions, so many fears, so many questions.....
We have surely made the most of the past 3 weeks. We have celebrated 2 birthdays, started soccer, went on field trips, had school pictures, decorated for Halloween and painted the kitchen. I have been on a de-cluttering tear, donating lots of Goodwill and our children's school.
I will be posting like crazy this week. I will be documenting Lucy's week, as I want to remember this last round, and have over 500 pictures to edit and post. I told you we have been busy!
Thank you for your prayers this week. We know that Lucy's journey is far from over. There are still mountains to move and hurdles to cross.
Each year our town celebrates its history with a weekend festival. After Ella's soccer game we headed over to check things out. It was one of the first excursions Lucy had made in town since her diagnosis. It was so nice having the whole family together, taking in the fresh air and beautiful weather.
When I asked for prayer that beds be open for Lucy I think I left off a very important part of that request. Please pray that a bed would be open for Lucy not solely for the purpose of her receiving treatment but rathr that a bed or beds be open due to some child or children getting well enough to be discharged. It's so easy to get totally engrossed in my own problems and honestly I think that is just natural. However, living the life of a St. Jude mom it only takes one Craing Bridge post, email, or text message to snap me back to reality.
We families bond together. Complete strangers throwm into similar life circumstances that only we can understand. Friends and relatives do their best but only those that walk those haunting halls of St. Jude everyday truly know what its like to have a child with cancer.
Lucy needs prayers, they all need prayers. Thank you in advance.
I'm reporting from the car. Ella and Jack checups complete. Three flu shots received. Just now eating lunch at 2:30. Rushing to get to tumbling.
Lucy's counts continue to rise. Hgb and platelets are great. ANC is only 100 points short! 2e lost our slot for tomorrow, but will try again Friday. Please, please pray that there are rooms open by then. There are a few of us waiting and time is of the essence.