Monday, February 28, 2011

Day 4

Oh what a joyful day!  So many accomplishments (highlighted in red) that my heart is exploding.  The day went something like this: She had her last bought of vomitting at 4am.  The team was trying to keep her off morphine, but because she lost all of her lortab they had to give her half a dose of the morphine to control her pain.  We had a consult with the pediatric urologist due to concerns about nerve damage to her bladder.  The big tumor in her spine was pushing against the nerves that control bladder function causing her to have a lot of pain before surgery.  She has been on a cathater since surgery and today was the day to find out how it was working.  We had been prepared by the urology department to expect possibly the worst.  Temporary or permanent spinal shock is often the case with spinal tumors.  And although we don't have a definitive answer, my brave little girl went potty tonight all by herself and almost completely emptied her bladder.  Erik and I were almost doing flips we were so excited!

Physical therapy started at 11:00 and while it was horrible to watch my baby in such agony, it was so encouraging.  She cried through the entire 20 minutes but never stopped.  The determination she showed was more than any adult could have mustered up.  God was really working for her.  I could see it.  He gave her some supernatural strength for sure today.  She sat up in the bed, turned her head from side to side and kicked her legs. 


Then.....she walked!!  Praise Jesus my baby walked.  She did have help and it was only 3 steps but wow!  She did it.  She's got a long way to go with her mobility and balance but it thrilled my heart just as much as watching an infant take their first steps. 


After PT, Lucy had to sit in a wheelchair fully inclined.  PT asked that she stay there for 30 minutes.  She did it for 50!!!  Once again, this was a major accomplishment for my sweet Lulu.  We then took a ride around the floor. 
Lucy was pretty much exhausted after that.  She has been resting peacefully the rest of the day.  Other accomplishments include:
  • watched 15 min of TV
  • nurses removed 2 IVs.  She only has the central line now that was surgically implated the day of surgery.  This is a port in her chest where she will receive her Chemotherapy.
  • she asked for food--real food like ice cream, pudding, cookies, powerade
  • her heart rate has stayed down to an almost resting rate all day
  • she kissed her mommy and daddy---sweet answer to prayer
Mommy had some pretty good moments today, too.....



Jack came to visit mommy today.  I wished it had been a more pleasant visit, but he is sick.  He was really fussy and irritable.  Aunt Cheri and Grandma to him to the doctor and he has a nasty ear infection.  It'll be 2 more days until I get to see him because we have to keep Lucy as healthy as possible.  I said a special prayer today that God would fill his mind with my voice, my laugh, my smell and that he would remember the feel my arms and kisses.  It rips my heart out to be away from him.  I need him as much as he needs me.  

 On a side note, my precious Ella got a special surprise today.  Yesterday we started to notice that she was displaying some worried emotions.  This morning she woke up and was felt too "sick" to go to school.  Although we knew she was fine, we felt like it would do her good to spend the day with her family.  So while Jack rested at the FedEx house, Ella spent the afternoon with Erik and me in Lucy's room.  Before she left to go home we gave her a cell phone.  I know, I know.  She's only 7.  But she needed some way to feel connected to us and this was something in her life she could control.  (she's a lot like her mommy--major control issues)  Since we gave it to her we have had no less than 20 text messages and 5 phone calls.  The sweetest moment of the day came when she called and asked me to say her night-night prayers with her. 

Thank you dear Jesus for a special moment with my baby girl.  We were absolutely connected through a loving prayer out of the mouth of a child. 

Pray for us tomorrow as we meet with the St. Jude team.  My stomach is in a nervous knot!


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Meeting Postponed

Meeting with St. Jude team postponed until tomorrow.  I'm really disappointed, but it's all in God's hands--in his time.  Please specifically pray that Lucy will get relief from the pain in her neck, head and back.  Dr. Boop says that we have to start pushing her.  She has to get out of bed and start walking.  That's the difference between parents and doctors.  They are ok with her being in a little pain and pushing her hard.  Mommy and Daddy want to protect her and just make it all better. 

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Sunday, February 27, 2011

Day 3

(the formatting on this post got all messed up. hope you can follow it)

Sweet Lucy has had a pretty rough day today.  We've had some "big" successes, but then they would be followed by a small set back.  The nurses are still having a hard time managing her pain.  When she gets aggitated she begins to vomit and we often lose what medicine she just had taken.  The morphine seems to work fairly well, but it often does not last until the next dose of pain medicine.  That's when things get bad.  But on a positive note, she can tell us when she is going to get sick, she will grab and rag and wipe her face and mouth after she gets sick and if she is really uncomfortable from the pain in her head, neck and back she will turn herself to a comfortable postition.  Another huge success today came when she lifted her right leg about 6" off the bed.  Her right side had the most paralysis so that made our hearts explode with hope!

My brother and parents got to witness the first and only smile since surgery.  I was so sad I missed it but honestly, my baby brother needed to see it more than anyone.  He really seemed to relax a little after that moment. 
My favotrite moment of the day was this:

Big sister Ella spent some time holding Lucy's hand.  I think they said "I love you" back and forth ten times.  It did my heart good!  Ella still does not know just how sick her sister is but her heart is so big she just can't help but to love her even more seeing her laying in that bed.






When my Dad came in this morning he had this angel with him.  It might not look like much to you, but when my mother was on her death bed back in 1995 after suffering from a massive pulmonary embolism some friends gave this to her and it hung about her bed.  It was her guardian angel for those scary, horrible 3 weeks.  Now it hangs above my Lucy's bed. 
This is my LouBear tonight.  First picture with her eyes open, although they look rather dim.  She knows she has to fight...and she will.  She already is. 
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Prayer for a Little Angel

I've got a big favor to ask.  I know you all are saying big prayers for my Lucy and PLEASE don't stop.  We are really struggling to manage her pain.  But I met someone today who really could use a prayer or two. 

We have been so insanely blessed by the outpouring of love and support from our friends.  I can't begin to thank you all for all the food you've brought.  It's like a grocery store in our room.  And its way more than we could ever eat.  After talking with the nurses we realized that there are so many families on our floor who are so far away from home.  They have no support systems, no family to keep them company, no one to fill in for relief periods.  It absolutely breaks my heart.  I have been so humbled.  Erik and I have so many people here that we have to take turns being in the room.  We have hundreds of people willing to help us with our kids, with Lucy, with money.  Anything we could possibly need we have. 

But this sweet girl that I met does not.  She's a single mom from Arkansas.  She's all alone.  She has a 2 month old baby who has been here since birth.  I don't know her prognosis but baby Briella is going to be here for a very long time.  The mother, Erika, is taking online courses to get her degree, she has a 7 year old she has not seen in 2 months.  LeBonheur has to arrange for sitters just so she can go get toiletries from the store.  She was supposed to go home a few weeks ago to see her family but her sitter fell through and she couldn't. 

If you don't think that will make you count your blessings you're wrong.  I can't believe I am saying that as my baby lays in bed fighting for her life, but God has made me acutely aware of just how fortunate I am.For all of you who have brought food, please know that even if Erik and I did not eat it this young mother is being blessed by your generousity.  I have opened up our "grocery store" to her and she is so appreciative. I am not telling you that to pat myself on the back but rather to thank you on her behalf.

All I am asking is that tonight before you go to bed, add baby Briella and mom Erika to your prayer list.  I know God is listening.

(Lucy update to follow....)
 
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Saturday, February 26, 2011

Day 2

The pictures above were some that my good friend Phil Ramsey took for Lucy's 4 year portrait. I remember vividly taking several weeks to order them because they were all so good I couldn't decide which ones I wanted. This is the picture of Lucy that I have in my head. While I know my picture of Lucy is going to change a lot over the next few weeks and months, my heart will always remember Lucy like this. If you could look closely at her feet they are covered in mud. That's my Lucy. Muddy feet and a hairbow!


Unfortunately this is Lucy now. In between bouts of vomiting, and waves of pain that hit like a wrecking ball, she tried to sleep. It's been a really hard day. Her neck and back ache constantly. She is on a continual supply of pain medications, but sometimes the pain is greater than the medicines. I was able to help give her a sponge bath in the bed tonight and that made me happy. She was miserable, but I'm convinced it will help her sleep better tonight.

We had several friends and family members visit tonight. I was especially surprised to see my family from Hendersonville. It was a somber reunion, but it brought some much needed distraction for the day. Everyone keeps telling me I am being so strong and so courageous. I just tell them that I'm glad they can't see the inside. I'm a hot mess! The past two days were really tough emotionally. Today I think I was most concentrated on helping Lucy cope with her pain. I haven't had time to mourn yet. I'm sure I will eventually. My days run into nights which run into days. It's bizarre really. It's almost as if there is no division of time. I'm living in one really long minute.

My mouth moves, I say words, I put thoughts together but it's not me talking. I'm standing on the outside watching a person that looks like me talk. I wish I could explain it better but maybe one day when I'm reading this 10 years from now I will be able to remember this feeling. I want to remember this feeling, as bad as it is. It will serve as a constant reminder of how precious each of my children's lives are and how much I cherish every breath they take.

Erik and I did have one super distraction today......

My babies came to visit. I couldn't hold Ella enough and Jacks fat cheeks were raw from my kisses! I miss them desperately. Especially Jack. Ella is living la vida loca right now, so I don't worry about her as much. Hopping from one party to the next. Don't get me wrong. She misses Lucy and was so happy to see her today, but she is enjoying the attention she is getting from friends and her grandparents, aunts and uncles. Jack on the other hand is my baby. He needs me. I am his caregiver. This is the time we are supposed to be bonding. I worry he will forget me. I worry that he will associate someone else as his mother. I sob as I write this because it rips my heart out. It's like two separate torments to deal with at once.

But once again I am reminded that he was never MY baby to begin with. Just like Lucy and Ella, he is only mine to hold here on earth. God is the caregiver to all 3 of my children. If he sees fit for someone else to fill in for me for a while I will accept that and focus my energy to helping Lucy get well. She has a horrible fight ahead of her and she is going to need me. I have to be her rock because she's going to need all the extra strength she can get.

Philippians 4:6-8
6"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.


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Post Surgery

written at 12:35 am on Saturday, Feb 26th:

Lucy is in recovery in the ICU this evening and I am sitting by her bed, keeping vigil. She is in a lot of pain and is extremely nauseated. She has a 4-5" suture running from the base of her neck to the middle of her head. She also has at least a 6" suture down her spine. The areas really look like frankenstein. I can't even begin to image how badly she hurts. She has a titanium plate in her head now and will have some pretty nasty scars to show off one day. I only wish there was some way to convey how strong my baby is being. It's really amazing. I think I would be a whiny mess! I just keep staring at her and thanking God for every breath she takes.
I think this next picture of the monitors sums up how I feel right now. One big, blurry, ugly mess. But you know, its not about me. I forget that sometimes and want to have a pity party, but this all about my Lu-bear. It will be for a long, long time.



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Friday, February 25, 2011

The Biggest Day of Her Life

At 6:40 this morning our Lucy was woken up for the biggest event of her life. She, of course, had no idea what was happening, but she took it all in stride. By 6:45 my parents, uncle, aunt, 3 cousins, pastor and his wife were all in her room. Poor baby. She had to know something was going on because we were all crying. When they came to wheel her down to surgery she climbed over into the transport bed, sat up big and tall and said "Momma, I'm not scared." Yes, that would be the point where I officially lost it! Her innocence was so acutely evident at that very moment.

Erik and I were able to walk down to the OR with her and stay until they were ready to begin. When it was time to say good bye, she was crying, I was crying and Erik was crying. It was sheer agony. Her surgery lasted for 9 hours. We were surrounded by family and friends the whole time. I feel so incredibly blessed to have so many people willing to take off work to be with us. It was nice having a distraction from reality for a while. When we finally got the call that she had made it through, we couldn't run to ICU fast enough. We haven't left her side for hardly a minute since. We had several wonderful friends come down tonight to see Lucy and I am so grateful for those friendships.

Our neurosurgeon sat us down and gave us the details from the surgery. They were able to remove the 3 largest brain tumors. There was one that he found in the frontal lobe that he could not get. The big tumor in her back had unfortunately begun to grow into her spine (hence the reason she can't walk or empty her bladder) so he was not able to get all of it either. He was, however, able to shave down most of the tumor so that it would stop putting pressure on her spinal cord and hopefully allow her to start walking again. Because she will have to have what they call "high risk" chemotherapy anyway, they are just going to go after the leftover tumors with that. Because the cancer is spreading so very rapidly, they are going to have to go at it with chemo and radiation with a vengeance. It is going to be hell on earth. We are trying to prepare ourselves, but I don't think you really can. We had also hoped to be able to spend a couple of weeks at home recovering before we went to St. Jude, but it looks as if we will more than likely be headed straight there. Which honestly suits me fine. I just want to jump on this thing as quickly and aggressively as we can.

I can't tell you how much I dread what is coming, but today was a HUGE stepping stone in the right direction. Lots of hurdles were crossed today. Sweet Lulu has a nasty road in front of her, but I know she can make it. God is going to hold her in his arms the whole way.

To try to maintain some normalcy last night, we had some friends come see Lucy. We ordered pizza, colored, watched movies and just laughed! It was so good for her to be with her sister and friends.

Her BEST friend Hyatt

I think everyone that has come to visit Lucy has brought a new stuffed animal. She loves it! She could never have too many in her opinion. As she gets them, she is lining them up in a nice, neat row at the foot of her bed. She has her own personal audience. It is too, too funny!




Well, right now it is 12:17am on Saturday, February 26th. We have been at Le Bonheur for a little over 48 hours. I can tell you that it feels like 2 weeks already. Right now we are just trying to breathe. It's all we can do. I told someone today that I feel as if I am standing in the office. One minute I am on two feet doing well. Then a wave comes and I'm on my face struggling to stand up against the force. We spent a lot of time in prayer today. I know its the first of many days like that to come.


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Thursday, February 24, 2011

In the Blink of an Eye


Life can change. In the blink of an eye. It happens. You are never prepared for it. And when it does you just try to survive. And that's what we are doing right now. Surviing. I am going to use this blog to update Lucy's status and track her recovery so that one day she can look back at what she went through and know how much her mommy loves her. Tomorrow morning at 7:00am the staff at LeBonheur Children's Hospital will come get my baby girl for the biggest event of her life. 4-6 hours of a grueling surgical procedure to remove 3 brain tumors and 1 tumor from her back.

Every time I allow myself to think about it I want to vomit. It doesn't seem real. Last night when I went to sleep I prayed that when I woke up this would all be a bad dream. Funny thing is, I never slept. So I feel as if I have been in a walking nightmare for 2 days. Tomorrow is going to be hard for us all. I don't think any of us are really prepared for the rollercoaster we are about to ride.

I just don't understand why it had to be Lucy. I could understand why God would want to put this disease on me. I have had 33 years to live a sinful life. I DESERVE to suffer. But not Lucy. She's only 5. But that's not how God works. I know that. There's a reason for all of this. I will NEVER understand it, but that's not my job. My job is to remain faithful and trust that God will heal my sweet girl. Medulloblastoma is no match for my Father. I will praise Him in this storm while I cling to the hope that He will extend his hand of mercy and grace to Lucy in the days, weeks and months to come.

Sunday, February 20, 2011

Jack is 5 Months

Every day he changes. Every day he does something new. He is discovering new things, exploring new places and hearing new sounds. We spent a lot of time outside last week and I think Jack really enjoyed it. He seemed so content to be in his exersaucer or in the stroller--just taking in nature. When I say he is the best baby I mean it. Really, he is. His smile, which is constant, will light up a room and his giggle is contagious. He's very close to sitting up and can stand forever with assistance. So strong!

And BIG!!! He has outgrown everything he owns. I am buying 6-12 months clothes. It is such a difference from the girls. They were always (and still are) so petite. Jack is right at 16 pounds now at 5 months. The girls both weighed 18 pounds at 12 months! I thank God for Jack every day, at least a million times a day. What a precious little miracle baby!






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Tuesday, February 15, 2011

Love Day

I don't know if I owe it to the new "diet", Jack sleeping more at night or just getting my hormones back in check post-partum. But whatever it is, I'm loving it. I feel as if I have a new lease on life these days. It's been a long time since I've felt this good. Yesterday I got up early and got myself ready for the day. After I took the girls to school, Jack and I met mom in town and we went for a great walk. The weather was beautiful. It was a bit cool, but the sun was shinning and I couldn't bear to exercise inside. After our walk I got to this beautiful girl's class for a Valentine's Day party...

Mrs. Cathy wasn't having a formal party for Ella's class, so I just poked my head in for a quick kiss and an "I love you" for my big girl. When I picked Lucy up we headed home for a fast bite of lunch and then headed outdoors until it was time to pick up Ella. She rode her scooter...

While Lucy played, Jack hung out in his exersaucer. I enjoyed introducing him to Mr. Sunshine!

After Ella's violin lesson, she came home to a Valentine's inspired decorated dining room, complete with a candle lit dinner. The girls were so excited.

I made Erik these yummy treats....

and he got me this WONDERFUL surprise...

I can't tell you how special yesterday was for me. It was honestly a perfect day. Life is good. God is good.


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Sunday, February 13, 2011

Rub-A-Dub-Dub

While Jack does not seem to LOVE a bath like the girls did, he tolerates it moderately well.

As I said, he tolerates it. That's a good thing, seeing that he gets one every night. It's part of the whole bedtime routine. When we finally got serious about trying to get him to sleep through the night, we found that giving him a bath helped calm him and trigger a que that it was time for bedtime. While he might not love the bath, he simply is beside himself when it's time to be naked on the changing table. He loves to have his diaper changed and the time after his bath before his jammies go on seems to be his favorite. Here he is in my new favorite PJ's. A red union suit my mom got in Colorado:

Look at the back...isn't it too cute?


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Under the Weather

We have been under the weather lately. Literally and figuratively. It snowed twice last week, resulting in the girls missing a few days of school. But to put a major damper on things, a crazy sinus infection has run through our house like a devil. Erik is going on 2 weeks of being sick. I went to the doctor on Tuesday, Lucy on Wednesday and Jack on Friday. We are all on antibiotics and have gone through lots of Tylenol and cough medicine. Ella hasn't been sick, but bless her heart she keeps a sinus infection about 7 months out of the year. I think she's just grown accustomed to it all.

To add insult in injury, Jack has reverted to some major sleep problems since he has been sick. UGH! Just when things were looking up in the sleep department for Momma, I've been up every 2 hours or so for the past 4 nights. OVER IT!!!!

To make matters even worse...as we were leaving our 2nd birthday party of the day yesterday evening, Lucy began to get sick. All in the parking lot, all over her and all over me. I just knew she had the dreaded stomach virus going around, but I've almost convinced myself that it was just a combination of too many sweets, too much jumping around and a whole lot of being tired! At least that's what I'm hoping.

Pictures from our latest snow day:

After 6 years, Ella is finally discovering how cool the woods behind our house can be.


My attempt at a self-portrait before Jack and I head outside to join in the snow fun.





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Wednesday, February 9, 2011

Super Bowl XLV

Like almost every other American, we spent this past Sunday night watching the Super Bowl. But there was something special about this game. Our beloved Packers were playing. Growing up, Packer football was a way of lifefor Erik. You see, his parents are from Wisconsin and no God-fearing Wisconsonian (yeah, I made that word up) would ever root for another team. The Packers are a blue-collar kind of team. They are owned by the fans--and yes we do own stock--and the city of Green Bay exists becase of the team. A few years back, Erik and I took a trip to Wisconsin to visit his family and we drove into Green Bay to see the stadium. It was a really special thing to behold. I would love to think that maybe, just maybe, Erik will one day get to see a game inside the stadium.

And as Jack gets older, I look forward to listening to Erik tell him about football, Packers and what it's like to be a real fan. This picture is for Grandpa!

We watched the game at our neighbor's house and had a great time. There were kids EVERYWHERE!!

Skipper and Ginger helping out with baby Jack. And we wonder where Carter gets his sillies from. Ella did not watch the game, but she knew we were cheering for the green team.

Just a great picture......

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