2 Kids, a Mini Van and a Mortgage

Lucy Goes to DC

2012-02-15T18:57:00.000-08:00

Lucy's story was part of a congressional hearing last week. Upon hearing this, Erik and I were both transported back to a horrific time in our lives. While I am glad that something positive may come from Lucy's experience, we both agree that no one testifing to Congress about Lucy's experience has a clue what it was really like. No one can begin to imagine the fear we lived with for 3 excruciating days.

This was an email that was written today by my husband, Erik. He never writes for our family blog, but I asked his permission to put his words on today. He was happy to share his view of one of the worst day(s) of our lives:

Last week our Lucy’s story made it to Capitol Hill as part of congressional testimony on drug shortages. I wish that I was the one who could have testified.

As many of you remember, we had just finished radiation and were looking forward to a month off before chemo. Lucy finished radiation on a Friday. She hadn’t really eaten since radiation started. She had been on I.V. nutrition(TPN) basically since diagnosis. On that Monday she went to school. She started to eat jello and whipped cream. She went to Ella’s softball game. And then she ate some watermelon and some whipped cream. We were so excited, it was a great day. That night as we were preparing for bed, Lucy looked at me and said, “Daddy I can’t see very well.” I tried not to panic, and hoped that maybe she was just worn out. By morning, Lucy couldn’t keep her eyes from fluttering uncontrollably.

We rushed to St. Jude only to be told we would have to wait a few days until they could do an MRI. Kate and I uneasily headed to the cafeteria, but before we get there our Doctor calls. By a miracle Lucy had not eaten since midnight, and they were able to arrange an MRI immediately. Kate and I are thinking the worst. Cancer must be spreading. It was the sickest feeling. I can only compare it to our first few days of diagnosis. We were defeated. We spend hours waiting on the MRI results. They come out and let us know that Lucy is in recovery. We rush back to her. She usually wakes up after a few minutes in the recovery room. This day she did not. I think her body was just worn out.

Kate and I load her into a wagon and head to consult the Doctor. While we are in the waiting room, our phone rings again. In the second minor miracle of the day, Lucy is still asleep. They saw something concerning on the MRI and want to take more pictures. Since Lucy is still asleep, they can still take her back. Kate and I are a wreck. We are still convinced that tumors are pressing on her optic nerve and causing the problems. We are sick. By this time it is 5 pm and we are exhausted from waiting on pins and needles all day. In about 20 minutes they bring our little girl back to us again. The Dr’s look confused. Dr. K, one of the great heroes of pediatric oncology doesn’t even look at us. I’m trying to read body language. His was telling. So they take Kate and I back to the room. Its good news they tell us. Good news in a completely warped way. It is not tumors causing the trouble. They think she has had a stroke. A relief. You are in a strange world when its good news that they think your 5 year old daughter has had a stroke. They admit us to the hospital room for the night. Wednesday and Thursday were just painful.

We watched our little angel go completely blind in a matter of a couple days. The optimism of Monday was long forgotten. By Friday morning, she couldn’t see her hand in front of her face. If I put my hand in front of her face and said ”how many fingers?” She didn’t even know that my hand was there. “It’s ok Daddy” she says, “At least I can still hear.” I had to leave the room and I balled like a baby. I was never more impressed with St. Jude than I was this day. The sheer firepower of talent that was on our Lucy’s case was incredible. While we had a diagnosis of a stroke, it was clear that they were not really sure what was going on. It was a who’s who of pediatric oncology parading through her room. And each one of them was talking to colleagues all over the country. I have been told that the email chains had gone on long into the night.

If Lucy had a chance to be healed, God was using the best and brightest of his creation. There was great debate about whether to do another MRI this day. It had only been since Tuesday. Not really long enough to see a change. My wife has done many things well during Lucy’s journey, but I am most proud of her for the quality relationships that she has with Lucy’s Docs. I will never forget, Dr. K, to his credit, grabbed Kate by the arm, and asked “what do you think? Do you think it has changed from Tuesday?” He respected and trusted her opinion. Kate says “yes” and we are off to get another MRI. While we are wheeling her down to MRI, the nurse kind of puzzledly asked if we knew they had ordered some vitamin for her I.V. We of course knew nothing. And didn’t think anything of it. We are on pins and needles again waiting on the results.

In a couple hours, Dr. D. comes to get Kate and me, and we go with her to review the MRI scans. The tumors are looking much improved. That’s not the problem. And it wasn’t a stroke after all. They have a new hypothesis. She was deficient in Thiamine. Vitamin B1. There had been a shortage worldwide. And she wasn’t getting it in her TPN. Thiamine is needed for the part of your brain that processes information from your optic nerve. Coincidentally it is also required by our bodies to process sugar.

So when Lucy ate her watermelon and whipped cream, her body used up every bit of thiamine she had left, and the light switch literally turned off. So good news. It is likely all reversible, but they don’t have a lot of data in small children, and they don’t know if any permanent damage was done. We leave Dr. D. Relieved and still concerned at the same time. When we get back to the room, Lucy is waking up. She turns her head as we enter the room. She squeals as we come in. The nurse is wearing a Scooby Doo scrubs shirt. And Lucy can already make out the characters. Just hours after they added a simple vitamin to her I.V..

So brilliant Dr.’s,and state of the art equipment, and God’s grace have come through for our Lucy. It took several weeks for her vision to return to normal. But now, months later those blue eyes are just perfect. And that is the story of how our little Lucy went to Capitol Hill.

Follow the link and then you can read the full testimony in the attached document. http://www.ashp.org/menu/News/NewsCapsules/Article.aspx?id=414

For those of you who are interested, here is my take of this horrible experience.

Ella

2012-02-13T18:34:00.000-08:00

Here is a montage of pictures that our great friend, Phil Ramsey, recently took of Ella. She was beginning to feel a little slighted with all of the attention focused on Lucy lately, so I wanted to give her a special day. She had a wonderful time and I am so pleased with how well they turned out!
Thank you Phil for sharing your God-given gift with our family. You are a blessing to our lives.

For the Records

2012-02-13T07:25:00.001-08:00

For my records:

Today in Triage Lucy was 44.3" tall. That's up from 43.9" last month. She weighed 33.4 lbs, up from 33 lbs at her last visit.

Vacation

2012-02-12T18:15:00.000-08:00

Well, we finally did it. Erik and I took a mini-vacation this past weekend. We had an amazing time with some amazing friends, but it was sheer agony leaving our kids behind. I knew it was something we needed to do. For me, for us and for Lucy. We have been attached to each other for almost a solid year and we both needed to gain a tiny bit of independence. Once we finally said our "good byes" and drove out of the driveway I started to relax.

But let me tell you. I have never been so happy in my life as I was when I walked in the door and my sweet children ran into my arms, all but knocking me to the floor. Even Lucy was running. The time away was enough to recharge our "batteries," but I don't plan on leaving my kiddos ANY time soon. Home is where I want to be. It's where my heart is. Right here with my husband and children. Right where we are now.

Tomorrow we are back to a normal routine. School, tumbling, St. Jude check up with Dr. W and laundry! Tuesday Lucy is scheduled for a small procedure to change out her g-tube tubing to a Mickey button. We are so excited for this change and it will give Lucy even more freedom.

And thank you all for the prayers for my grandmother. Your prayers were definitely felt and greatly appreciated.

Signing off to go snuggle with my babies. We have lots of lost snuggle time to make up for!

2012-02-06T18:59:00.001-08:00

If you have a prayer to spare, I'd really appreciate you lifting up my grandmother tomorrow. She is having a heart cath in the morning. My grandfather is still bravely fighting his own battle with cancer, too. I love them both so much.

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What I Do......

2012-02-05T19:33:00.000-08:00

And don't do. These days I don't Pinterest, I don't sew or craft, I don't blog stalk and I don't Facebook. I don't even keep up with my own blog the way I want to.

But what I do get to do is awesome. Every moment of my day is set aside for my children. I am a blessed mommy to be able to be home with my babies. Do I ever wish I could carve out an hour for myself? Yes!!! (and I would spend it at exercising). But that's ok. All things in their time. I'm good. The kids are good. Erik is good. We are enjoying life and every precious memory we make.

Here are some pictures of our weekend at home. It was cold, wet and gloomy here so Redbox was our best friend!

(Jack has discovered his belly button)

Kristie's Site

2012-02-02T09:46:00.001-08:00

I have been made aware that kristie's address has already reached the hands of more people than I imagined.

With that being said, you can find their Caring Bridge site by searching for Kristietollett. It's all one word. I encourage you to leave her a message and let her know you are praying for her family.

If you don't have something nice to say to her PLEASE don't visit her site.

----I just wanted to say thank you for the amazing comments you guys left concernning Justin and his family. I continually feel blessed to have such wonderful friends. If you don't find your comment posted, its because I deleted any comments with emails on them. I just didn't want anyone grabbing your email address because, well, you just never know!

Yesterday

2012-02-01T11:41:00.000-08:00

Yesterday was one of the hardest days of my life. I haven't cried as hard and as long as I did yesterday since the first days of Lucy's diagnosis. I watched as Kristie and Jerry laid their precious baby boy to rest. The hurt I felt for her was so intense that even now I can hardly breathe. I cried until I almost hyperventilated. And this wasn't even my child.

When I walked into the funeral home I saw Kristie at the front of the room. Standing by her son's casket, holding her head high. She was being so strong. But when our eyes met my knees got weak and I couldn't make my legs move. As I stumbled up the aisle to go to Kristie, the depth of our friendship was truly revealed as we fell into each others arms and cried. No, not cried. We wailed. And for the rest of the day I cried. And she was so strong. For so many weeks I have told her I wish I could carry her burden for even one day. I wonder if maybe yesterday God didn't allow me to do it in some tiny way. Because what I felt yesterday was unlike anything I have ever experienced in my life. I will never be able to put it into words.

Kristie and Jerry were both filled with the inexplicable peace that we have all been praying God would send their way. She told me that she couldn't explain it, but that she was at peace knowing her Son was in heaven. Don't get me wrong, she grieved yesterday. But she was so strong.

And I wasn't. I'm still not. I have cried many times today thinking about her and him and Jerry. This morning I realized that amidst the tears of mourning I was crying tears of fear. The kind of fear that squeezes the very breathe out of you. I watched my friend say goodbye to her child and knew that it could be me one day.

After the funeral and graveside, Kristie invited me and Charlie (the dear friend who attended with me) over to her home. We spent roughly 2 hours there visiting with this precious family who we have come to love to greatly. Kristie told me about Justin's last days, his last breaths and his last moments in their home. I stood in amazement as she spoke so calmly and bravely. She was so strong.

I was not. I told her that every night I wake up 3-4 times to go see if Lucy is breathing. I have nightmares about the "what ifs." Visions of losing my child run through my head like some sick movie reel and I can't seem to make it stop. I told her that there was no way I could ever let them take my child from my home. The very thought of not ever touching her again, or stroking her beautiful bald head or kissing her soft skin was more than I could bare. And how in the world do you ever let them be put in the ground. I couldn't do it. I just don't think that there is any way I could say goodbye to my child. Kristie was so strong. I was not. I am not.

I realize as I write that some days my faith is so small. Today it is small. Today I am weak.

I would ask that you continue to pray for Kristie and Jerry. Their journey towards healing has not even begun yet. I can't imagine how one would even begin. They are very blessed to be surrounded by both of their families and the outpouring of love from their community was inspiring. But nothing will replace their sweet Justin. Nothing. One particular prayer I ask you to remember is for God to fill their minds with the happy memories of Justin. Kristie particularly asked that you pray that God would totally erase the vision she has of her son taking his last breath. I can promise you it was nothing like what you see on TV. It was truly more than any mother or father should EVER have to witness. Please, please pray for this family.

My life was changed forever when Lucy was diagnosed with cancer. For the worse in many ways, but for the better in many other ways. Meeting this wonderful family is a true blessing that has come from this nightmare. My life with them in it is fuller and has more meaning. They will be a part of our family story forever. It is a true honor to call them friends.

This picture was framed and displayed at Justin's funeral.

Before I left Kristie's house Jerry told me that when he looked at this picture, he prayed that with that touch, Justin absorbed all of Lucy's cancer and took it to heaven with him. Those words are burned into the very core of my heart and I will never forget the noble, righteous man who was able to pray for my daughter in the midst of his greatest dispair.

I love you Kristie and I love you Jerry. May God bring you rest and peace that defies all human understanding.

(many of you have asked for Kristie's Caring bridge address. She did give me permission to let you have it, but I am choosing not to put it on this site. I have a blog follower who likes to leave very hurtful and evil comments for me. I can handle it. It doesn't even phase me. But Kristie, she can't take it. And I know that this person is so evil to their very core that he/she would leave ugly comments for her. And I'm just not going to take that chance. So...if you want to send me an email and I can verify that you are not the evil one, then I would be glad to share her site so that you can leave her wells wishes and prayers.)

Justin Issac

2012-01-29T04:29:00.001-08:00

Our sweet friend Justin has left this earth to rest peacefully in the arms of his Heavenly Father. While we know he is healed and will never hurt again, his family's pain has only really just begun. I ask that you, your families, your churches today please remember this precious family as they try to deal with their loss and eventually learn to live again.

Family Fun Night

2012-01-26T20:17:00.000-08:00

Since Lucy's illness, we have really had to slow our lives down. I mean REALLY slow down. And, imagine this, we are loving it. We look forward to our Friday nights at home. The girls pretty much declare Friday night movie night, even if that just means watching a little Disney channel before bed. I forget about dishes, laundry and other chores that need to be done and we just snuggle on the couch or play games, or whatever the girls choose.

Jack gets outside time with Daddy...

Last Friday, Ella planted seeds that she picked out with Daddy...

Lucy practiced being a little mommy...

And so did Ella...

Lucy and Daddy made cookies (I just take pictures apparently)...

(look at that hair!)

And Ella practiced her organizational skills (she IS my daughter)....

Today

2012-01-25T19:52:00.000-08:00

Today was a busy day. OT for Lucy, a quick visit with my sweet Maddie girl, homeschooling (Mrs. Cissy is out of town this week), tumbling, church, bath/bedtime and then exercise. However, we did manage to have some fun:

(Jack discovered playdoh)

(we are creating a word wall for Lucy to help with her site words. Mrs. Cissy and Mrs. Beverly will be so proud!)

At the end of the day, this little girl was tuckered out! Today, I am so grateful for every breath my three children, wonderful husband and I take.

A Question of Faith

2012-01-22T19:45:00.000-08:00

I recently received an interesting comment. I actually received it about 2 weeks ago and just didn't know how I wanted to respond to it. At first I thought I would just ignore it, but it has been weighing heavily on my mind. And let me preface this by saying I have no idea if I am giving the "right" answer. I am sure there are Biblical scholars out there that could espouse eloquent and scripturally based commentary for hours on end. I am neither a Biblical scholar nor an eloquent writer. So here goes....

The comment: "My only concern with placing everything in God's hands as Ella implies is that if something does not work out as hoped the blame is on God and that is quite a burden to place on a young child. How does your religion handle this? How does a young child ever have trust again in God if something tragic happens and all the trust had been placed in God?"

My response (even now I am stumbling over my words):

The word that stood out to me most of all was trust. Although I absolutely teach my children to trust God, and they do, we choose instead to emphasize to our children to have faith in God.

"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1

We are faithful to our belief that God will heal Lucy. We are certain that even if her healing were not to be on earth, it would be in heaven. Faith allows us to believe in a merciful God, a loving God and a forgiving God. A God who would never for one moment want us to suffer or experience hurt. But because we live in a fallen world, we are no longer immune to the trials of this life.

Ella has received Christ as her savior. In that very moment that she had her salvation experience, God changed her heart forever. As a person of faith she has been filled with an unexplainable peace that a relationship with God brings. As much as I hate to say this, it's the only way I know how to sum it up; Unless you have faith, unless you have experienced true salvation, you will never understand what faith means. Unless you believe that there is life after our time on earth and unless you trust that God has prepared a place in heaven for you, then you can't understand how another person can walk through fire with grace.

So, what if things don't turn out for Lucy the way we pray they will? What if we lost another loved one in our lifetime? What if we suffer loss on many other different levels? What if? What if? We choose not to live in the what if. We choose to live in the now. And if the what if happens, we will be renewed through our faith in God. He will restore our souls. He will make us new.

Will we hurt? Of course we will. I cant even imagine the hurt we would feel. When I think about what Justin's family is going through, I literally yell at God for them, beg God on their behalf and cry out for mercy to a God who promises to answer our prayers. And He will. When Justin's work on this earth is done, he will go home to his Father. Until then, we continue to pray. Because we have FAITH that God is working.

A child will learn to trust again just like an adult will. Time, prayer and more time. The relationship that is made at the time of salvation is the purest relationship one can ever enter. While a Christian mourns, experiences anger, questions God and searches for meaning in their despair, God will never turn His back.

Romans 8:38-39
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

When I was 8, a little girl that was as close as family passed away in a tragic accident. I will never claim to know what her family felt and I can say without a doubt that they still mourn the loss of their daughter. I truly grieve for them now in a way that I could never have were it not for this experience with Lucy. But as a child, my understanding of her death was much more innocent than it is now. I remember a close family friend explaining to us that she had passed away and explained that God needed another angel in heaven. My faith was not shaken as an 8 year old, although I mourned in the way that an 8 year old is capable. More so, my faith was renewed by the example that was set by the Christian adults in my life. Those that did not lash out at God. Those that chose to turn to God in prayer and seek His help in understanding.

I pray that if our family is ever faced with this situation, Erik and I would set an example of Faith for Ella and Jack.

So, that's my answer. It might not be a good one, but's its all I have. My friend Kristie wrote this on her Caring Bridge site and when I read it I was humbled and ashamed of the fear and anguish I have experienced over Justin's situation. This woman is a mighty example of what it means to be a Christian. Could you imagine going through this situation without faith and trust in God? The testimony that Kristie will have will be immeasurable in human terms.

"Battles are fought and won in many different ways. Just because my child is going to heaven does not mean he lost by any means. If anything, he has gained. " Kristie T.

Where We Have Been

2012-01-20T18:28:00.000-08:00

I promised we have not dropped off the face of the earth. It's been really, really busy around here. So much to be thankful for. So very appreciative and grateful for a full and busy life. Out of respect for my sweet friend Kristie, I have chosen not to post about our life right now. I just don't feel comfortable with it. So, with that being said, I am going to keep this post short and sweet. I would ask that you please continue to pray for Justin and his parents. Justin was sent home over 3 weeks ago and was given about a week to live. His parents are suffering along with him. They desperately need your prayers.

And, if you are inclined, I invite you to keep checking this blog. I will start updating more in the days to come. I have lots of pictures to upload and lots of stories to tell.

Here's what we've all been up to:

Lucy has gained 2 pounds! Shouts were heard around the hospital.
She and I were at St. Jude the past 2 days for 3 months/annual testing. Long, long days.
Ella is no longer in a size 7 slim. Thanks to tumbling she is now one solid muscle and has graduated to 7 regulars! This probably seems like a crazy thing to post, but it is a huge deal to us.
Jack is finally trying to talk. LOVES to sing and can tell you where his nose is and is a master copycat on the tumbling mat. My girls were practically reading by 16 months (yes, he is now 16 months), but I'm not too worried. He seems to just be quite content to groan and grunt.
Lucy is getting settled into her new tutoring schedule and seems to love Mrs. Cissy. Harsh realization that she is really behind her class, but we are committed to getting her caught back up before 1st grade.
Ella made all A's on her report card. Way to go baby girl!
Erik and I are prayerfully considering our next move on the charitable front. We have lots in the works and I look forward to revealing more details soon.

And best of all.......the 2nd Annual Go Lucy Go 5k is being planned. More details will follow, but we are really excited. It is going to be bigger and better this year and we are pumped!

Faith of a Child

2012-01-18T11:05:00.000-08:00

Ella's card to Lucy. It says "Dear Lucy, I no (know) you love God so I trust in you (Him) to get better."

I know she meant she trusts in God to heal Lucy. Because she does. They both love Him so much. Their faith rekindles mine every day.

Results

2012-01-13T18:35:00.001-08:00

I've finally allowed myself to breathe and the news is slowly sinking in. I am happy to report that by the grace of God Lucy received a good report today.

Thank you all for the blanket of prayer that you covered our family with today. Your prayers are what kept us moving today. I will be honest and say that for a long time I have felt as if these scans we're going to be ok. However, starting this week doubt had begun to creep into my mind. By noon today I could hardly breathe. The weight of fear that weighed on my chest made it hard to even move.

We know that today was only one step in the journey of many, many miles but we are rejoicing in today's victory. Praising God for His gentle mercies and answered prayers. Thanking God for the miracle in my sweet Lucy.

2012-01-13T13:10:00.001-08:00

3:10 pm. Headed home. Now the agonizing wait begins.

2012-01-13T09:18:00.001-08:00

11:17am. Lucy just went back for scans.

Lori-

2012-01-12T19:53:00.000-08:00

Lori- go to Amazon and do a search for Brooklyn Tabernacle Choir. They have several CDs and I know you will find one (or two) you will like! I will pray for your husband and you as well.

The Art of Distraction

2012-01-12T19:47:00.000-08:00

Tomorrow is Lucy's scan day. Scaniexity has set in. I am not nervous, just anxious. So, today my only goal was to keep myself busy. The morning started with early tutoring for Lucy and a haircut for me, followed by a few errands run in town. Thank you Phil Ramsey for my gorgeous picture of Jack and a special thank you to Camille for the very nice gift. Thank you notes will follow.

Then we headed to Memphis for dentist appointments for both girls. Ella was scheduled to have her upper appliance taken out and guess what else....

My baby girl got braces. I think they make her look so old. My heart is a little hurt tonight. My baby girls isn't my baby anymore. Ugh. I HATE it!!

Lucy was scheduled for a teeth cleaning. I was really dreading it for a couple of reasons. One, she hates to have her teeth brushed. I think they are still so sensitive due to not being used for so long that she just cries every time she sees a toothbrush. Secondly, there were many days in the hospital when brushing teeth was just a battle I didn't fight. Erik and I were prepared to hear that she had many cavities and that her teeth were in horrible shape from the acid erosion from vomiting so much. Thankfully, in nothing short of a miracle, her teeth looked great! No cavities, no tartar buildup. We will consider this a small victory for our team!

Next, we headed to Hobby Lobby for a few activities to keep us busy tonight. I made hair bows for Lucy's hats.

Then I came home and helped Erik hang the new picture of Jack, put laundry away and sewed Cabone rings on Lucy's blackout draperies in her room.

Oh, and I prayed a LOT today. Alternating prayers for Justin and Lucy, I found myself talking with the big Man more than usual.

And on another note, Lucy won't leave the house without at least 2 blankets and 3 stuffed animals. She's so cute!

And Jack plays so hard every day that he is likely to fall asleep anywhere, anytime!

I thank you all in advance for your prayers tomorrow. I wish I could begin to explain what I am feeling tonight, but I can't. So I will only say that my Hope is in the Lord and my strength comes from Him, too. The prayers going up for Lucy now and tomorrow will help us make it through the worry and wait.

Thank you for loving my girl!

Sisterly Love

2012-01-11T06:31:00.000-08:00

Taken with my phone at 1:00am this morning. Melted my heart.

Hard

2012-01-09T22:18:00.000-08:00

Today has been a hard day. For Lucy and for me. She is having a hard time adjusting to the new feeds and complains almost constantly of a tummy ache. It's so hard to see her hurting, but I know she has to eat. It's like rehabilitating a broken leg. It hurts but you have to push through to reach the desired end results. She will grow accustomed to eating again. It's just going to take time.

I'm afraid I'm beginning to come across as a little unstable these days. One day I'm up, thinking about how great Lucy is doing. Then the next I am down. Today, and tonight, I'm way down. Like crying so hard my head is going to explode kind of down. I'm really, really pissed off about cancer tonight.

This is a horrible picture of me, but I think it truly captures exactly how we both were feeling today. We were sitting in the big chair in E clinic. Lucy crying because her tummy hurt and me sobbing because for whatever reason the weight of every mother in that hospital seemed to be on my shoulders today. I met two mothers this afternoon who have been locked in their children's battles for a while. One mom who's son has missed his whole high school experience thanks to Medulloblastoma. When she was telling me this, I cried. In front of this total stranger, I cried and fought back the urge to scream. I hurt for her son so badly. Then I cried for the kind lady who was snuggling with her precious bald headed 15 month old who hadn't seen her 3 year old much for the past year and who is about to journey to the other side of the country for more treatments. I don't know what it was about today. I have walked the halls of that hospital for almost a year now. But today was different. I ached and cried for every parent, every child and every sibling there today.

I also cried as I thought about the last time I saw my precious friends Kristie and Justin. They were sitting in the chairs beside me. I don't know it I will ever sit in those same seats again. That is just a sacred memory to me. I literally felt as if someone was wringing my heart with their hands as I prayed for my friends. If I could carry Kristie's burden for even 1 hour I would. I would love to give her the kind of rest I know she so desperately needs. I would love to provide the strength I know she is searching for right now.

After I brought Lucy home from an all day excursion to the hospital she collapsed on the couch. I could tell she didn't feel well and quickly realized that she was running a fever. So, back to Memphis she went. Erik took her so that I could actually be home with my other two for a few minutes before they went to bed. When I got her off the couch, she was crying and pleading "I just want to stay at my house." My almost 6 year old baby is really starting to get tired of it all. She just wants her normal life back. She cried all morning because she can't go back to school right now. She was so mad at me for the longest time today. (a Rocephin shot and fluids was all she needed tonight, but she did have to get "stuck" for the 3rd time today.)

My sweet Ella is starting to ask a lot of questions about Lucy's cancer that I really am not prepared to answer. I just don't know what to say. When she boldly asks "Will Lucy ever have cancer again?" I don't know what to tell her. I don't want to lie to her but I also don't want to add any more worries to her sweet heart than she already has. She's a worrier by nature, but she's also crazy smart. She knows so much more than I realize. After Friday, Erik and I know that we need to sit and talk with her about some things. We've just got to get Friday under our belts first.

I was talking to my friend Leigh tonight about the feelings and emotions I was dealing with today. I told her about meeting the two new ladies and the conversations that we had. Leigh reminded me of a time in my life where I wrote about knowing there were hurting mothers at St. Jude that needed someone to talk to. They just needed someone to connect with. I wasn't ready then. I was selfish and mourning in my own way. I don't feel bad about that either.

But now things are different for me. I don't usually seek people out to talk to, but I sure am willing to be a set of ears. And I have no problem sharing a tear with a total stranger. Because what I've learned is that when you enter the walls of St. Jude, when you walk the halls as a mother, you are a part of a bigger family. A family whose common bond is fighting like hell to see their children survive. The tears, the anger, the fear...those are the common threads that knit us together. At one point in my journey as a cancer mom, I couldn't carry anyone's burdens but my own. Now I realize that I don't have a choice. I might not personally know every family that walks through those hospital doors but I don't have to. I am living their nightmare with them every day.

Thou, O Lord

2012-01-08T20:10:00.000-08:00

Tonight I am so thankful to be here. In my home with my family close by. Today we were able to all 5 make it to church. We stayed for Sunday School and "big" church! It was wonderful to be in the house of God today. Our choir was filled to the brim and I honestly thought that they would blow the roof off of the building as they sang today. Wow!! What a blessing. "Thou, O Lord"

Psalm 3:1-5
King James Version (KJV)

1Lord, how are they increased that trouble me! many are they that rise up against me.
2Many there be which say of my soul, There is no help for him in God. Selah.
3But thou, O LORD, art a shield for me; my glory, and the lifter up of mine head.
4I cried unto the LORD with my voice, and he heard me out of his holy hill. Selah.
5I laid me down and slept; I awaked; for the LORD sustained me.

Our pastor today challenged us to learn through life's difficulties. Clearly, this was one sermon that I could benefit from. As I listened to him speak, these words kept ringing in my ears "I am Committed to the Blessing of my Crisis." Everyday I realize a new blessing as we begin to lift our heads out of the murky waters. I look forward to watching His mercies unfold, as I wake each day and wait patiently for the blessings that will come from Lucy's illness.

Tomorrow morning we start a very busy week. Honestly, I am very thankful for a packed calendar. Friday is Lucy's scan day and I when I allow myself to stop and think about it I start getting sick. So, I am going to keep myself really busy this week. And when they doesn't work, I'll just spend a lot of time praying! Lucy begins her work with her new tutor in the morning. I am happy to have found Cissy and I know she is going to be the perfect fit. Thank you to ALL the many people who emailed me, texted me or messaged me about this situation. I honestly did what I said I was going to do. Which was nothing. When Cissy called, it just felt right. I am so humbled that so many of you were willing to help.

After tutoring we head to St. Jude for a weight check and electrolyte check. The rest of the week will consist of school, PT, OT, church, dentist visit for both girls, tumbling and most importantly.....a visit from Erik's parents. The girls are already counting down the days!

We are Home

2012-01-07T06:06:00.001-08:00

I'm happy to report that Lucy got to come home yesterday afternoon. Just in time to pick up big sister from school! Both girls were trilled. I thought Ella was going to jump into my lap through the car window when she saw me. It was so special.

We all snuggled on the couch last night and watched a movie and enjoyed every minute of it.

Thank you again for all of the prayers for my girl and our family. We are headed to Ella's basketball game this morning, followed by a pottery party for Lucy!

Adventures of a Wagon

2012-01-05T16:16:00.000-08:00

I'm sure this will not amuse anyone but me, but today we had many adventures with a red wagon. Jack came to visit Lucy and me in the hospital and let's just say it was....well, exhausting. That boy is into everything! He punched every button he could find in Lucy's room. I finally ended up just letting him pull this huge red wagon down the hallway. It must have been twice as big as him, but he man-handled that thing like it was a stuffed animal.

He couldn't even sit still when he was buckled in the wagon!

And then I figured out I could attach Lucy's pole underneath her red wagon and we could stroll alot easier.

Last night Lucy's blood pressure dropped to 80/18 at its lowest point. We had every doctor in this place in our room trying to figure out what was going on. She was totally a-symptomatic, but still there was an obvious issue. We never figured it out, but she did have to have a new IV at 1:00am. That's 3 days in a row for a new IV. Her little hands and arms are black and blue!

Lucy is doing great with her feeds right now. Her body seems to be adjusting well and tolerating this new influx of calories. If all goes well, we hope to be home by tomorrow afternoon. Thanks for your prayers!

Mercy and Peace

2012-01-05T13:10:00.000-08:00

Mercy and Peace.

Two words that cross my lips countless times a day. Those are the 2 things I pray for on a continual basis these days. As I pray for Justin, Matthew and Brandon I utter those words with such conviction that I sometimes feel as if my heart will explode. Three children who are coming to the end of their battle with this horrible monster called cancer. Three sets of parents who are living the worst imaginable hell possible. Three families who will never, ever be the same.

I pray for mercy on the children and I pray for peace for the parents and families.

Mercy--something that gives evidence of divine favor
Peace-untroubled, tranquil, content

Can a family living this nightmare even come close to feeling these things? I truely believe the answer is yes, but only by the absolute grace of God.

Today I am adding two more children to my prayer list. I hope you will do the same.

--7 year old Eli Williams, from Athen, Ga, is at LeBonheur this morning having surgery to remove as many tumors as possilbe from his brain and spine. Some of the tumors they know are inoperable. I was told that the family also has 3 other children at home that they are leaving behind.

--A mother who's 7 year old was diagnosed with a brain tumor contacted me today. How humbled I felt as I shared any piece of advice I could with her. My heart broke for her as I know what road she is traveling down.

Cancer is an evil monster. I will never, ever understand it. I will never, ever accept it.

The Death of Pretty

2012-01-05T10:00:00.000-08:00

http://www.ncregister.com/blog/the-death-of-pretty

As a mom of 2 girls I found this article to be pretty eye opening. It is so true. Pretty is dying. You should read it. I'd love to hear your opinion.

Day 2

2012-01-04T20:21:00.000-08:00

Lucy had a really rough night last night. She had a horrible time emptying her bladder, so around 11:00 pm the nurse came in to do a Foley. I think it must have scared Lucy enough that she finally went a tiny bit. It wasn't enough, but it kept the cath away. Lu finally asked to pee in the bed (which meant a bed pan) and after that she was much more comfortable. We did have to wake her every 2 hours to make her potty. Then, on top of that, her vein blew where her IV had been placed and it took 2 nurses and 3 sticks to get another stared at 4:00 am. We finally got some sleep between 5-9am.

Today started off better, but she was in a lot of pain from her surgery. The Dr. had warned us that due to the fact that she was so skinny, she would probably be in a little more pain than the normal child. Imagine that, Lucy being anything but "normal." But her pain was well maintained and she managed to spend some time playing on the computer and playing with her sticker book.

Tonight we are really watching a low blood pressure issue that she has developed. The Drs. aren't too worried about it, but it is making me very uneasy. I am so very tired, but I just can't sleep until I know that her pressure is coming up. We are going to check every 30 min until we see it come up and then stabilize.

I got to meet with my sweet friend Kristie and her husband Jerry tonight and was able to love on Justin for a minute. It wasn't long enough. Please say an extra prayer for them tonight. My heart is bleeding for them tonight.

Random IPhone Pics

2012-01-04T15:48:00.000-08:00

The girls and me with our new baby cousin, Baylor.

A special doctors visit with friends.

Riding to East Tennessee for Christmas.

This is one beautiful baby.

Lucy and Ms. Beverly

Lucy and Mrs. Charlie

Update

2012-01-03T19:41:00.000-08:00

Lucy is finally resting well. She has struggled with pain a good bit today and is really hungry. She has not been allowed to eat or drink anything today. They will start a saline test in the morning and if she passes, she will be able to start eating before lunch. Please pray for comfort for her tonight. She was on a good amount of pain meds today and I don't want to have to keep pushing those unless its absolutely necessary. Today has been a challenge. I pray we made the right decisision.
----------------------------------------------------------------------------------------------------------
Finishing up posts I forgot about from 2011. I still have Christmas to post tomorrow. So glad I didn't print my 2011 book. I don't know how I forgot all these. Especially Christmas!

http://erikandkatekrull.blogspot.com/2011/12/in-preparation.html

http://erikandkatekrull.blogspot.com/2011/09/pirate-party.html

http://erikandkatekrull.blogspot.com/2011/09/heritage-day.html

http://erikandkatekrull.blogspot.com/2011/10/go-tigers.html

http://erikandkatekrull.blogspot.com/2011/11/fall-soccer.html

http://erikandkatekrull.blogspot.com/2011/09/jacks-first-zoo-trip.html

http://erikandkatekrull.blogspot.com/2011/12/ugh-oh.html

In Recovery

2012-01-03T09:58:00.001-08:00

Lucy is in recovery now. Her procedure went well. I will post again tonight.

Happ Birthday

2012-01-01T12:18:00.000-08:00

HAPPY BIRTHDAY TO YOU!!!!!

The love of my life, my best friend. My soul mate.

G-Tube

2012-01-01T08:09:00.001-08:00

I don't know a lot of the details but Lucy is scheduled for surgery on Tuesday morning to have the feeding tube placed. We were first told that she had to stay in-patient for 3 days but later was told only 24 hours. So, I'm not really sure about that yet.

I will probably not post again until Tuesday. I've got some work do around here before Lucy's surgery.

Happy New Year. May God richly bless you all.

2011 Recap

2011-12-31T11:23:00.000-08:00

I don't think I've ever been so excited to see a year come to a close. 2011 was a year I will never forget. Our lives changed forever on February 23rd and we are still dealing with the aftermath. Probably will for many years to come. I've said before that I would never, ever chose this for our lives. Not for Lucy, not for my other children and not for me or Erik.

This year alone we have experienced more hurt, more fear, more anger and more heartache than any one person should know their whole life. Our eyes have been opened to a world we wish we never knew. We have made friends and we have lost friends. We have grieved with parents we hardly knew but were so connected to on a deeper level. We have been to the depths of hell and have celebrated on the mountaintops. We have learned to trust God, fear God and love God in a way that we have never before.

Through this year I have been thankful for many things as well. I am thankful for my friends. My tried and true friends who have been by my side through it all. I am thankful for our families. It would be an understatement to say that we couldn't have made it for even day without their help. I am thankful for Covington. The town that I couldn't wait to leave when I was 18 and swore I would never return to. Oh how I love this town! The support and love that has been shown to our family is still unbelievable. We have been overwhelmed and remain amazed by it all.

I am thankful for the thousands of friends I have never met and will never meet this side of heaven. Those of you who love my daughter and our family. Thank you all for coming into our live and walking this journey with us. Thank you for sharing our fears, tears and victories. None of you will ever know what a blessing you have been to our family.

And most of all I have come to stand in awe of the power of prayer. The prayers that have been said around the globe for Ella, Lucy, Jack, Erik and myself have been felt on a daily basis. I know that the walls of heaven have been shaken as the prayers have flooded the throne of God. Our Lord has been honored to hear your petitions and we will forever remain humbled by them.

Lucy's cancer will not define her. It will not define our family. Rather, we will use this hurdle in our lives to do great things. Lucy is destined for something great. I know she is. I also know that the rest of our family will rise to the calling of a higher purpose. My Ella will use the hurt she felt and the compassion she has shown her sister to affect many lives one day. Jack will read about the road his sister and family walked and will grow to have an unbridled zeal and appreciation for life. Erik and I are patiently waiting for our greater purpose to be revealed. Something is brewing and we are holding on tight until we figure out what it is.

For now, my greater purpose is raising three beautiful children and caring for a wonderful husband. I am blessed woman for sure.

Hurting Tonight

2011-12-30T18:59:00.000-08:00

Tonight I write with the heaviest heart. I can hardly breathe and the amount of pain I feel is so intense. Our sweet friend, Justin (the one that Lucy has been with since day 1 of this journey) was taken by ambulance last night from East Tennessee to LeBonheur. We had just arrived home from our own travels from East Tn when I got the phone call. Kristie, his mother, was in the ambulance with him and they were headed my way. Without a single thought I got right back in the truck and headed to Memphis. I met her there and stayed until her family arrived 2 hours later.

Justin has had an acute onset of tumor growth that led to sizable formations in his brain and bleeding there as well. The family has chosen not to intervene with medicine, as the doctors have told them there is nothing they can do to help him. He traveled back home tonight to be with his family and friends in his last days.

I am asking you to pray for him and his family right now. Honestly, I need you to. I am so angry, hurt, confused, scared....I am finding it hard to put a prayer together. All I keep saying is "please God bring them peace." As I hugged Kristie last night as she sat by Justin's side I thanked God for allowing me to be a part of their lives. They are an amazing family and I have come to love Justin and Kristie so much. I hurt for them as only a mom of a child with cancer can. I want so desperately to make things better for them. I know I can't and that hurts even more.

Thank you for believing in the power of prayer. Thank you in advance for your petitions on their behalf.

Tomorrow

2011-12-29T12:34:00.001-08:00

We are headed back to St. Jude tomorrow. Going in for a dreaded weight check. I'll post after we meet with Dr. W.

Right now we are driving home from our Christmas vacation to East Tennessee. Anyone want to come help me unpack??

Making a blog book

2011-12-28T19:12:00.001-08:00

This is the site I use :

www.blog2print.com.

It's really, really user friendly and I have used it for 3 books now. I am quite sure there is a fancier site for those of you who have a lot of publishing experience. I don't have that or much time so this site works best for me.

(I am not endorsing any one site. Just sharing which one I use)

Happy book making!!

How it Happens

2011-12-28T10:49:00.000-08:00

Ever wonder how you can be in such a good "place" in your life and then all of a sudden things take a turn in the wrong direction, quickly? How you can feel so close to God and feel so secure in your Christian walk and then all of a sudden you start doubting the one who gave you life? Well, here's how it happens (in my life at least):

When I get scared, confused, feel as if things are spiraling out of control, I lean so heavily on God. I pray--oh, how I pray. (Like when we were last faced with this feeding tube issue.) I pray with such amazing fervor. And I mean every word that I pray and I truly believe God can and will answer those prayers. Then things begin to settle down and my mind is removed from those issues that were burdening me and I get distracted by everyday life. My kids, my house, my husband, my friends. All of a sudden, those fervent prayers decrease to a morning prayer and night prayer. You know, when I find time.

I start trying to work things out on my own. I start answering my own questions, solving my own problems. And then....BAM! Smacked in the face again by the reality that I have abandoned the very God that has so many times rescued me from myself. Today is one of those days.

Jack has been sick, Lucy has been sick. I am scared that these past 3 days have pushed Lucy back so far that she is going to end up with the G-tube after all. We are having to make some hard decision about school for her next semester and I have been making myself crazy with my calendar trying to make it all happen.

As I stood in the shower this morning with my mind racing with a list of to-do's a mile long I just lost it. I cried and cried. I am angry with myself for doing this again. Why? Why do I do this all the time? Why can't I just live a life of constant submission to God? Things sure would be a lot easier and a lot less stressful if I would. This will be a struggle for me the rest of my life. Thanks to this type-A personality I was "blessed" with, letting things go just isn't my cup of tea.

So, here are the things I am letting go of today:

1. We have decided not to send Lucy back to school in the spring. 2 things are going to have to happen. We either have to find a tutor that can come in, or she can go to, every day for at least 2 hours a day. Or, I have to find a sitter who can come over every morning and watch Jack so that I can teach Lucy. I know what I want to happen--I want to find a tutor. However, I am open to whatever God wants. I just need to get an answer soon. There I go again! This morning I had typed out an email/text sending it to every person I know asking for suggestions for tutors or sitters. But I never sent it. Something just didn't feel right about it. I am going to sit back for a few days and see what will happen. God will answer this for me. Just not right this minute.

2. I am worried about Lucy's weight. She is so weak. She has not played with her cousins at all this trip and has spent most of her time curled up on the couch. I want so desperately for her to be normal again. It really, really makes me sad and angry. But I know I can't force her to be something she is not ready to be yet. I know she will get there. It is just going to take a lot of time. We go back to St. Jude on Friday and I will heed the advice of the Dr. W. If she feels we are too far behind the curve, then a feeding tube it will be. I will accept it and move on and be very grateful that I got to have my family all under one roof for Christmas.

3. Fear of the future. And when I say fear I mean total, gripping fear that makes me want to vomit. Yesterday Erik and I did a little after Christmas bargain shopping. I found a major steal on some little knit dresses for Lucy. Out of habit, I picked up a few Christmas prints for the next year. As I was looking at them I allowed myself to think the unthinkable. "What if she's not....." I can't type it. Thinking it was hard enough.

So, this is where I am today. I'm a mess. But I have history to look to and from my worst messes is where God shines the brightest.

Scans

2011-12-28T09:36:00.001-08:00

Our dear friend Kellan is having her 3 month post treatment scans today. Please say a prayer for clean scans and peace for her parents.

Ugh

2011-12-27T17:24:00.001-08:00

Jack is sick. Coming from both ends. Sorry. I know that's gross. Lucy apparently didn't get rid of her CDiff on her last antibiotic so She is sick again. Started 2nd round of meds today. Let's just say things here aren't so great. Merry Christmas to us!

FINALLY!!!

2011-12-27T07:49:00.000-08:00

On December 27, 2011 I finally finished posting for 2010. Woo hoo! Now I can print my 2010 blog book AND my 2011 blog book. This has been weighing on me for some time now and thanks to some great family members who are occupying my little wild man I was able to finish today. If you would like to see the posts, here are the links. It was very sobering looking at pictures of a healthy, happy Lucy. But it gave me a lot of hope for the future. I'm just ready to have my family whole again.

http://erikandkatekrull.blogspot.com/2010/12/all-dressed-up.html
http://erikandkatekrull.blogspot.com/2011/11/random-holiday-fun.html

http://erikandkatekrull.blogspot.com/2010/12/christmas-morning.html

http://erikandkatekrull.blogspot.com/2011/12/christmas-2010-east-tennessee.html

http://erikandkatekrull.blogspot.com/2010/12/more-christmas-pictures.html

Christmas

2011-12-24T20:04:00.000-08:00

Tonight we attended a Christmas Eve service at a local church. It wasn't "our" church, but what I realized when I was there was that it didn't matter. We were all there with the same purpose. Preparing our hearts for the celebration of the birth of our Savior. It was a wonderful service, followed by Christmas Eve dinner with my parents and brother.

The reindeer are fed and the children are snuggled tight in their beds.

Thank you ALL for being a part of our lives. I feel as if my family has grown in a unimaginable way this year. I wish you all the peace and blessings that only God can bring you in the years to come. May you all prosper and be blessed with good health. Thank you for loving our family.

Merry Christmas!

Ugh-Oh!!

2011-12-23T19:25:00.000-08:00

This is what happens when you leave food on the table at our house.

The adventures never end with this one!

Time

2011-12-22T20:44:00.000-08:00

Time...something I don't have a lot of these days.

Time...all Lucy needs apparently.

Gained another 2/10th of a kilo today. That comes to almost one whole pound (.9 pounds) in one week!

God has this. He really does.

LeBonheur Christmas Dinner

2011-12-21T07:29:00.000-08:00

For all of you who have asked about and want to help with the Christmas Dinner, here are the details:

We will be serving Friday night, the 23rd. I know its the not the same as Christmas Dinner, but that's the last day that Wells Kitchen, the caterer, is open before Christmas. And with things so up in the air with Lucy, its the best we can do.

That being said....we will plan on serving dinner at 6:30 on Friday night. If you are interested in helping, in ANY way, I need to know. We will need a few servers (although not too many), we need some gallons of tea, some desserts made and we will still take monetary donations to pay for dinner. We also need paper products: salt and pepper, plates with dividers, solo cups, aluminum foil and plastic serving utensils and well as forks and spoons.

The 7th floor is so excited about us coming and it is such a huge blessing to the families that are spending this holiday facing life threatening illnesses. Please know that your contribution, no matter how big or small, is so appreciated.

I need to hear from you if you are interested in helping in any way. Please email me at k8krull@gmail.com

Thank you so much and Merry Christmas!!!

Update

2011-12-21T07:06:00.000-08:00

At Lucy's doc appointment yesterday she had gained 1/10th of a kilo. Clearly not much at all, but at least she did not loose any. She will go back tomorrow for another weight check. I will post again tomorrow.

Disney pictures will come eventually. I'm thinking its going to have to wait until Erik is home for a few days during Christmas. Jack is very jealous of the computer. He doesn't like to share me with anyone or anything :)

Thank you all for your continued prayers and support. Merry Christmas to you all!

Encouraged and A Christmas Gift

2011-12-19T17:56:00.000-08:00

I just want to say thank you to all of you who have sent encouraging comments to me via email or this blog. I have never felt so uplifted as I have this past week. And I have to tell you, I think your prayers are working. For the past 9 months I haven't allowed myself to wallow in self-pity and despair. But this past week I completely swam in it. I was so depressed. The weight of the stress that I was living with was about to break me. Last night, even, I went to bed at 6pm and woke up 6 times throughout the night with an upset stomach.

But this morning the Lord answered my prayers and I awoke with a renewed sense of hope and peace. Lucy has been eating better the past 2 days. I don't know if its enough to keep us free from a G-tube, but its progress. Even if she ends up needing help, I can say that we all did our best to clear the hurdles. That sweet little girl has tried her hardest to eat. God love her.

So, thank you all. Thank you for your sweet and caring words. Thank you for your prayers. Thank you, once again, for loving a little girl that you may never meet this side of heaven. I may not respond to your comments, but I promise I read them. Every single one of them.

And here is a bit of encouragement for you. If you have not spent all of your Christmas budget and are looking for the perfect gift for those "hard-to-shop-for" relatives and friends, let me suggest Compassion International. Compassion International "exists as a Christian child advocacy ministry that releases children from spiritual, economic, social and physical poverty and enables them to become responsible, fulfilled Christian adults."

My girls were given the task of going through the gift catalog and picking out what they would like to give. We are doing these gifts in honor of special people in our lives. They chose several items and I narrowed down our list to a grouping that fit our budget. I was able to print our some great cards detailing what the girls chose that I wrapped and presented as gifts. My grandparents seemed pretty honored to have a goat bought in their honor! I only wish our family could do more.

I am encouraged today by you, my dear blog friends, and by my God. I don't know what our doctor appointment will bring tomorrow, but I do know that my God has it under control. As my friend Sarah D. would say "he's got this." Yes, yes He does.

And So It Goes

2011-12-16T17:14:00.001-08:00

I am posting from my phone so this will be short and sweet. Today we met with Dr. W. I love that woman. She was so honest and straight forward and reaffirmed the things that we both knew. 1) Lucy has lost too much weight. 2) We are fighting a major uphill battle. 3). We don't have much time to make hard decisions. 4) even if she does start eating we still have to worry about refeeding syndrome.

So with that being said we left the hospital with a new appetite stimulant and 3 days to gain weight. We will go Tuesday for a weight check and will know then if Lucy is destined for a feeding tube.

Fast forward to post doctor visit. Lucy asks for spaghetti and we set out on a mission to find some. Not many places carry to-go spaghetti. We find some and Lucy goes to town. I haven't seen her eat like that in months. It was so awesome. After she was done we gave her her first dose of medicine.

Fast forward an hour later. Lucy has a violent reaction to her new medicine and mom and dad are scared to death. Panicked called to Dr and one scared little girl. Everyone agrees that her little body is just too run down to handle this medicine.

Lucy is sleeping in my arms right now as we sit in a dark room. I am praying over her with emotions that only a mom can feel. It's in God's hands. I am handing it over to Him completely. I trust that He only wants what's best for her and I know he will provide the answer. Right now I am trusting in Him. That's all I have left.

And wouldn't you know. This really isn't something I can control after all.

Second Trip

2011-12-16T05:15:00.000-08:00

Well, we are headed back to the hospital today. This time we are going specifically to meet with the doctors to discuss a game plan for Lucy. I prayed all night for wisdom and a clear mind. I have to admit that my brain is a little murky right now. While I want to fight the feeding tube with all my might, the mother in me sees it as something that I can control. It is the first thing in 8 months that I can physically do that will make my baby better. Does that make sense? Cancer is cancer. Chemo, radiation and lots of prayers are the only answer. I can't do anything in my own power to make her cancer better.

Eating though, and weight loss, that's a different story. I went to bed last night with a near migraine from stress and the tears that I shed yesterday. This is literally eating me alive. I feel as if I am watching my baby starve to death and there is not much I can about it. Except this stupid feeding tube. With it, I can actually CONTROL something in our lives again.

But is that what God wants for my baby? I am asking for wisdom so that I can see past my own fears and trust that He knows whats best. I am praying that God will give the doctors wisdom as well. I am praying that the answer will be crystal clear today, with absolutely no room for doubt.

A Happy Moment Today

2011-12-14T20:11:00.001-08:00

Rough day today but for a moment she enjoyed the nice weather.

A Happy Moment Today

2011-12-14T19:48:00.001-08:00

Rough day today but for a moment she enjoyed the nice weather.

Its a Start

2011-12-14T10:07:00.000-08:00

One of the best pictures of the whole trip, taken by my SIL Cheri. When Lucy saw Minnine Mouse she hugged her for no less than 5 minutes.

Another Bump in the Road

2011-12-13T19:29:00.000-08:00

(the girls and Jack and I grabbed from Fro Yo today while we waited on Lucy's special medicine for her tummy)

Just as I was preparing my Make a Wish revealment post yesterday, Erik and I made the decision to take Lucy back to St. Jude for some ongoing stomach issues she has been having. I won't get into details, but just know that she has suffered from lots of intense stomach cramps and diarrhea. Another thing that has been concerning to us is the amount of weight she has lost. We knew that once she stopped receiving TPN, there could potentially be some weight loss. However, she has lost almost 4 pounds since she began eating on her own. So, all this combined, I knew we would all rest better if we made a visit to our favorite doctor in the world.

Lucy had to have an IV started once we got there. That was a miserable experience to say the least. She cried so much after that trauma that she fell asleep in my arms until we got to see Dr. W. Thankfully her electrolytes and vitals all looked great. Her ANC, platelets and WBC were all great, too. She did receive fluids before we left, just to be on the safe side. We didn't leave the hospital until after 9pm.

While we were there we discussed the weight loss issue and the team all agreed that she had fallen below the threshold of acceptable weight loss. Her poor little body looks so pitiful. Lucy is also not making great strides in PT either. We all feel as if that is a result of her not having enough caloric intake throughout the day. She is just too weak and her muscles don't have the fuel they need to grow. So...that being said we have some major hurdles to clear still ahead of us.

I would be remiss if I did not add that there was talk of a feeding tube. The very thought makes me sick to my stomach, but I know that something has to happen. Something has got to change.

This morning the NP called and said that Lucy did test positive for C-Diff. I can tell you that I have never been so happy to hear that my child had an intestinal disease. You can only imagine the fear that I entered the hospital with yesterday. (Stomach cramping was the major symptom that led us to her initial diagnosis. I was a wreck all afternoon.) While this is a nasty little bugger we have to deal with, it gives us some hope that within 48 hours she will begin to have relief from the diarrhea and stomach cramps. Once those subside we hope she will start to eat more. At least what she does eat will stay in her body.

So we have a game plan and we are going to watch her weight like a hawk. If we don't see improvement in the very near future, we will be forced to consider the unfavorable options before us. I know so many of you have poured your soul into praying for my little girl. For that, I am forever grateful. But if there are any prayers for her left, please ask God to grant her an appetite and the ability to fight this infection.

Make A Wish

2011-12-13T16:00:00.000-08:00

I will never forget the day that Dr. B's head nurse, Tracy, walked into our hospital room, probably a week after Lucy's first surgery, and told me that she had just submitted Lucy's name to Make a Wish. Not knowing much about Make a Wish, except that it was something sick children got to do, I freaked out. In an instant, tears began streaming and I bravely asked "does this mean Lucy is going to die?" That's what I thought it meant when you were granted a wish. I think Tracy was taken aback by this rather frank question and quickly reassured me that Make a Wish was so much more than that.

(Lucy and Becky)

This quote was taken from the Make a Wish website: "a wish experience is frequently a source of inspiration for children undergoing difficult medical treatments and a positive force that helps them overcome their obstacles. A wish experience is often more than a dream come true: It’s the catalyst that rekindles their belief in themselves and the promise of their future."

(Lucy with Allie and Elizabeth)

Do you know that I actually had someone send me a message that our family was greedy and selfish for accepting a trip from Make a Wish. That we were cruel for stealing a child's wish since Lucy was on the mends. I obviously did not respond, since there was nothing I could say to such an ignorant person. However, I stand firm in believing that if anyone deserved a wish come true, it was Lucy.

I do pray that Lucy is healed from her cancer. I also pray that it never, ever comes back. But the sheer hell that my child went through for nearly 8 months made her deserving of this trip and a lifetime more to come. No one will ever know how much hurt Lucy suffered, how this cancer will change her life and what challenges she will face going forward. I love the quote above because moving forward after treatment is a huge challenge. There is such a mindset that these children acquire that makes it hard sometimes to get on with life. They have been knocked down for so long that many forget what its like to live "well."

On Thursday, December 1st, Lucy's class was invited to participate in a Christmas party at my Alma-mater, Covington High School. Little did she know that this was the day she would be granted her wish to visit Disney World to meet Buzz Lightyear! The student body, under the leadership of the Student Council, adopted Lucy as their Make a Wish grantee this year. Our family was honored that our local school was able to grant Lucy's wish. It meant so much more being so personal. A huge thanks to Mrs. Becky Todd for agreeing to make this happen at CHS!!!

The school put together the most wonderful revealment and we were literally blown away. There were crafts for the kids to do...

There was the reading of the specially written story all about Lucy and her fight from beginning to end..

And a visit from Santa himself...(thanks Walt!!)

Ella and Jack were made to feel so special and Erik and I even got some TV face time! It was hilarious.

(this is Erik and I trying to hold ourselves together when they had someone sing "When You Wish Upon a Star. Serious waterworks!)

Me trying to describe the days' events would never do the experience justice. All i can say is "thank you" from the very bottom of my heart. "Thank you, thank you, thank you."

Racing for a Cure

2011-12-12T07:47:00.000-08:00

The St. Jude Marathon and 5k was held on Dec 3rd. Team Lucy was well represented by friends, family and strangers alike. Of the 16,000+ runners, I would take a guess that very few actually personally know a child suffering from a life-threatening cancer. But like with Lucy, so many people have grown to know and love her through the advent of social networks and the old-timey prayer chains and word of mouth. So, even if there was not a blood relationship with a child suffering from cancer, there is an emotional attachment for probably each and every runner.

St. Jude is an amazing hospital and will be a part of our lives forever. Because of the generousity of people throughout this world, St. Jude is able to help families like ours have HOPE. Hope for a future, hope for a cure and hope for a life without cancer. Thank you to all who participated in the Marathon, Half-Marathon and 5k. Thank you to the ones who walked in honor of Lucy. And thank you to all who walked in honor/memory of the thousands of children who suffer from childhood cancer.

A special thanks to those I know that came in from out of town. It was wonderful seeing so many friends from college (especially all you Pi Phis!) A huge thank you to Kristie Lyons for organizing our huge group and designing our great shirts! Team Lucy looked fabulous!!!

Thank You Allison

2011-12-11T20:05:00.000-08:00

Thanks Allison. Meeting you has been a blessing, too. So grateful for your kindness, creativity and love. Thank you for capturing this moment in our lives.

http://allisonrodgers.typepad.com/blog/2011/12/30-days-of-thankfulness-nov-29th-meeting-lucy.html

Allison Rodgers Photography http://www.allisonrodgers.com/ gets total credit for the pictures below. I am in love with the pictures she took of Lucy. I especially love how she captured the moment that Lucy and I were sharing, not aware that Allison even had a camera in her hand.

Just imagine what moment in your life Allison could capture.

Lucy on You Tube

2011-12-11T19:03:00.000-08:00

Lucy was recently featured in a video for St. Jude. Check her out!

http://www.youtube.com/watch?v=UCDAi7M_flw

We are back from a wonderful, memorable vacation. I'll be posting this week all about it! Oh, and for those of you who might have tried to call or text me last week, I graciously loaned my nice smartphone to the animals at Animal Kingdom. I should have another phone by tomorrow.

p.s.- if you want to really, truly take a vacation....lose your phone. No texts, no phone calls, no emails. Now that's what a vacation is all about.

Blogging Break

2011-12-04T05:30:00.000-08:00

Lucy was granted her "wish" from the Make a Wish Foundation this past Thursday. So that means our family is packed and headed to DISNEY WORLD! We spent a whirl wind weekend running the Stjude 5k, finding a house sitter, attending a Sunday School social and packing!! We have a ton of family going and know this is going to be a week full of memory making. When i return i will have a bazillion pictures to post! Lucy's revealment, the race, the TRIP! Thank you for you continued prayers. Our family is so very blessed!

In Preparation

2011-12-02T16:17:00.000-08:00

Harley the Elf left the kids a surprise the day before we left for Disney.

Then, Ella and Jack spent a little time practicing sibling love. It was so sweet watching them play together.

A Dear Friend

2011-12-01T17:27:00.000-08:00

I am writing to the people of Covington and the surrounding area. You all have proven to be the most caring, generous and serving community. I am so proud to be a part of this great county. Our family will forver be grateful for the way you cared for Lucy and our family.

But today, there is another family that needs your help. My dear friend, Carol Ferrell, has recently been diagnosed with rectal cancer. Up until yesterday she did not have insurance, when by the true grace of God she was approved for Tn Care. And while they are rejoicing in this new development, this insurance will not come close to paying for the medical expenses she will encounter on this journey towards healing.

If ever there was a woman who was deserving, Carol would be her. She is one of the most giving and selfless ladies I know. She has raised her granddaugther from birth and would give you the shirt off of her back. Tipton County.....Carol needs our help.

I encourage you to think of giving, if only $5 dollars, towards Carol's fund. I know I personally could do with one less Christmas present if I knew that she was getting the medical care she needs. A fund has been set up at Regions Bank in her name.

Regions Banks
103 East Pleasant
Covington, TN 38019

May the Lord bless you and keep you all!

Team Lucy Details

2011-12-01T09:11:00.000-08:00

Ok, Team Lucy. First of all.....Team Lucy has raised over $35,000. I am officially floored! Oh my goodness! I am just absolutely amazed! Way to go guys!!!!!

A decision has been made about where to meet. On Saturday we will be meeting outside of the FedEx Forum by those big fake basketballs at 6:50am to take a picture promptly at 7:00am. We will follow with a quick prayer before the 5K starts! Please understand that we will not be able to wait on anyone who might be running late. I can't wait to see you all there.

Another Elf Idea

2011-12-01T09:07:00.000-08:00

A kind reader, Sandy, brought this web site to my attention. This little girl had Medulloblastoma like Lucy and her parents started this project after she passed away. If you don't have an Elf on the Shelf, this might be another option if you are interested in purchasing one (it is NOT the original Elf on the Shelf brand, but a great alternative.) And, what better way to pay it forward. I'm really into doing that these days. Visit http://www.elvesfromcatie.com/ for more information!

This little elf was caught this morning at my computer visiting the Elf on the Shelf website! I guess he missed his pals.

And this little guys still feels pretty crummy. But he sure was cute on Monday in his Santa shirt!

Train Wreck

2011-11-30T18:47:00.000-08:00

Well, not really a train wreck per se. More like being hit by a Mack truck. That's how I feel tonight. I can NOT get sick. Not now. We have some really exciting things happening in the next few days and I don't have the luxury of being ill. Tomorrow is a HUGE day for Lucy and Saturday is the St. Jude Marathon (I'll be doing the 5k)...I hope.

A few quick answers..

1. Ella's Thanksgiving dress came from Gymboree. So did Lucy's "thankful" shirt.

2. The Elf on the Shelf can be found here. or http://www.elfontheshelf.com/Home.aspx

3. Some of you have expressed interest in helping out with the Lebonheur Christmas meal. I am so humbled that you would be so gracious. Thank you very, very much. Please send any donation to my attention
(Kate Krull)
c/o Rose Construction
126 Highway 51 South
Covington, TN 38019

Sick Baby

2011-11-30T11:01:00.000-08:00

A sick baby makes this mommy sad and VERY nervous. Praying both girls can avoid this virus, especially my one with the weakened immune system.

It's Snowing!!

2011-11-28T19:18:00.000-08:00

Yes, that's right. The deep South got the earliest snow I can ever remember. It's just beautiful and the girls were mesmerized. Ella even kept asking to make snow cream. That kind of snow would have gotten us a day off from school tomorrow. Oh well, to school it will be and Lucy is thrilled. She went today for about 2 hours and we plan on letting her go most of the morning tomorrow.

Happy snow day!

And Merry Christmas, too!

This Weekend

2011-11-28T18:58:00.000-08:00

This weekend we........

Trimmed out tree:

Watched the deer that was hanging out in our backyard before church:

Tried to snap a picture of this very active, but super adorable, little boy in his church coat:

Celebrated my Dad and Mom's birthday. We were supposed to be celebrating my sister's as well, but she had a sick baby. Yuck!

And helped Mom and Dad trim their tree:

The picture above was from this year. The picture below was from last year. The girls are wearing the same dresses from last year!

Thanksgiving Memories

2011-11-26T17:29:00.000-08:00

This year's Thanksgiving will forever be remembered as the most wonderful Thanksgiving ever. I was surrounded by the family I love most and we made some wonderful memories. Here are the highlights of the day:

Lucy went down the slide at least 2 dozen times. Laughing hysterically every time! It was so wonderful watching her playing so carefree.

Jack also spent most of the day playing on the slide. He went down on his tummy every time and thought it was the best thing ever!

They were so funny that everyone gathered outside to watch them play and laugh. I think everyone really appreciated seeing Lucy smiling, laughing and enjoying life like a 5 year old should.

We took some time to take some pictures with my grandparents. I think the picture of the 4 boys and their wives with Maw and Paw Paw turned out the best. My grandfather is fighting his cancer as hard as Lucy did and most of the time you would never know it. He is so courageous and strong. I love him and my grandmother so much.

My sweet Ella was so busy playing with her twin cousins, Reagan and Taylor. They never slowed down long enough for me to snap many pictures of her.

Memories of Thanksgiving wouldn't be complete without remembering us gathered around the tables eating, laughing and talking about "old times."

And lots of pictures of the ones that mean the most to me.

A few more memories....

Dad wrestling Jack to put his shoe on while he was trying to go down the slide. I was supposed to be helping but I was too busy snapping pictures and laughing at my Dad who was trying REALLY hard not to lose it!

My handsome husband who I love so very much. The best Dad on the planet!

Sweet Maddie. My niece and the love of my life. She's so precious that I laugh every time she smiles. She is an angel and I just love her so much. Just watching her and Jack play makes my heart happy. When she sees me she says "KK!" as if I was the most important thing in her world.

Uncle T and Jack. Jack doesn't like many people, but he took to Tommy immediately at Thanksgiving dinner.

The most precious picture. Jack and Pops throwing acorns in the water. This is a picture of innocence.

My Thanksgiving prayer this year was simple. "Thank you dear Lord for giving me my family back." It was all I could do to keep from crying all day long. Greatfulness abounds and I am so thankful to have an appreciation for what's important in life. I don't sweat the small things. I'm keeping my focus on what matters most.

He's Baaaaaack

2011-11-26T15:54:00.000-08:00

Harley returned. Our Elf is here and we can't wait to see what kind of mischief he's up to this year...

Day 1 Writing on the Mirror

Day 2 That little bugger got into our candy jar. But at least he brought a treat for Ella, Lucy and Jack!

Yes, Yes We Are

2011-11-26T10:00:00.000-08:00

To steal a line from one of our favorite shows, "Phineas and Ferb,"......"Yes, yes we are."

Giving Thanks

2011-11-25T20:17:00.000-08:00

Giving thanks with a grateful heart. That's what the Krull family is about these days. Thanksgiving eve, we humbly served a full dinner to the patients and staff of the 7th floor at LeBonheur Hospital. The place where we spent an agonizing month fighting for our daughter's life. Turkey, dressing, gravy, potatoes, corn, green beans, rolls and desserts galore! Thanks to the yummy food from Wells Kitchen the meal was a huge success. It was a true honor to provide a small bit of "family" to these people who are fighting their own battles. I only wish I could do more.

A very special thanks to the people who went along to serve, donated money, bought supplies and baked desserts. I am so very thankful that others understand my passion for LeBonheur and can appreciate what this hospital means to our lives. I don't know how many people received a blessing from this one act of kindness, but if only one person did then it was worth it. I know I blessed immeasurably. Ella and Lucy even went along!

We are planning on doing this again at Christmas. If you are interested in contributing, let me know. It is my goal to make this annual tradition.

The group that served dinner. Thanks a million guys!!

Cookies for the nurses, courtesy of LeBonheur nurse and friend, JR Coulston. They are as yummy as they look, too. The heart with the white stitching is the LeBonheur logo.

The girls riding in style.

2011-11-22T19:19:00.000-08:00

People I am thankful for today:

Just to name a few......

Grateful Heart

2011-11-20T15:40:00.000-08:00

This post is one of true gratitude. So many things have happened this week that have stirred my soul to its very core. The most memorable one occured on Friday. TCA had its annual Thanksgiving Feast and we all went to watch Ella perform. Her class dressed as Pilgrims and sang the song "Give Thanks With a Grateful Heart." It was the most moving and amazing moment of my life. It really was.

When we arrived at the school, I parked and started getting Lucy, her walker, Jack and his stroller out of the car. Along with the diaper bag, the movie camera and my still camera. I got Lucy's walker out first and told her to start getting herself out of the van while I got Jack settled. By the time I got back around to her side, she was gone. Seriously, gone. I panicked. I quickly gathered my things and ran inside, only to find that she had made it to the front of the cafetorium with the rest of the kids. She was putting on the pilgrim costume and finding her spot in the performance. Now, mind you, she had no previous knowledge of what was going on. She didn't even know why we were going to school in the first place that day.

The program started before I even had time to get my camera or video camera out. I was totally unprepared for what was about to happen. My sweet Lucy stood up, steady and strong, and sang. She sang with all her heart. Did she know the words? Of course not. But that didn't stop her. She sang along and tried to copy the motions. I sobbed like a baby, my mom was crying and Erik was doing his best not to loose it, too.

It was amazing. As they sang the words "Give thanks with a grateful heart for what the Lord has done for us," I was moved beyond giving thanks. I honestly think I experienced a mountain-top moment that cameras or video could never do justice. I will have this image of a 5 year old embracing life with all she has forever. For that moment, Lucy was not hindered by any obstacles that have been placed in her life. She had no idea that she was different from the other children. And with the innocence of a child, she sang with a grateful heart to God because she didn't even realize that she had anything to be mad at Him about. She was truly grateful to be there, and so was I.

Give thanks with a grateful heart
Give thanks to the Holy One
Give Thanks because He has given
Jesus Christ His son.

And now let the weak say I am strong
Let the poor say I am rich
Because of what the Lord
Has done for us.

Give Thanks.

My heart sang out with gratitude for that moment. I am still crying about it even now. I am also grateful for today. For the first time since Easter, all 5 of us were at church. Together as a family. We almost made it all the way through Sunday School before Lucy's teacher called to say she was getting tired. It was a wonderful start and I was so thankful to be there today. Lucy was so excited about going that she was dressed and sitting on go long before it was time to leave. I am so thankful my children enjoy going to church and learning about God. What a blessing.

As I think about this week and Thanksgiving, I am more aware today than ever before of how very much I have to be grateful for. Yes, I was dealt a bad hand this year and justifiably have some things to be upset about. Amazingly, instead of having a bitter heart I feel more grateful than ever. This week I am going to write about some of these things and spend some time reflecting on the lessons I have learned in 2011.

Recap

2011-11-17T19:05:00.000-08:00

Family time before Ella leaves for school....

The girls helped me back crescent rolls filled with peanut butter and chocolate chips. Yum!

On Monday, Lucy's platelet count was 54. 50 was the magic number to get to in order for her line to be removed. WBC was 2.5, Hgb was 9.7, ANC was 1100. Today, her platelets held at 54, WBC was 2.7, Hgb was 9.5 and ANC was 1200. She skirted by with the 54, but it met criteria so we went for it! I was so nervous but really excited.

Today was so huge for all us, but most importantly Lucy. I think, psychologically, this will jump start her healing process. She has made gigantic strides so far. Its funny how I can't always tell day to day how much she has improved. But as we walked the halls at St. Jude today we were stopped by countless people telling Erik and I how wonderful Lucy looked. How she had so much life in her eyes and they couldn't believe she was walking so much. More than one person told me today that they had never seen her out of the stroller before. And its true, she NEVER walked. She just couldn't. It's great being reminded every now and then by people who don't see her every day how wonderful she looked. It did my heart good.

Erik went along today in hopes that the line would be pulled. I'm so glad he did because it was a busy day and the line pull was as bad as I could have imagined it would be. Not being dramatic, just honest. I literally almost passed out. Lucy was so brave.

Before we went in to procedures, Lucy spent a leisurely morning having a smorgasbord of food that she really wanted to like, but didn't.

And then was escorted around the hospital by her father in the princess chariot. (I would have made her walk....)

This is the life-size gingerbread house that St. Jude built. It even has a fireplace inside!

Chill-laxing before we get Lucy's labs. My stomach is in knots by this point.

After we got the go-ahead, we made a pit-stop by the annual gingerbread decorating party (which was oh-my-goodness a mad house!)

Lucy donned her chef's hat and coat (which she got to keep) and was paired with a local chef who was volunteering for the big event. It was one of the coolest events we had attended so far.

Then...D-Day. Here is what the line looks like.

This is Kim, the wonderful lady who does most of the line placements and removals. Since Lucy was unfortunate enough to have multiple femoral lines for Apheresis, we got to know Kim real well! Kim took great care of Lucy and although the procedure was a little trickier than most (wouldn't that be Lucy's luck), it is done and she is one happy little girl.

We had to hang around Memphis for a few hours to make sure that there were no complications, so we celebrated with a lunch at Pei Wei and did a little Christmas wishing! Thank you all for your prayers today. They were definitely felt.

As an aside, I got a pretty good lecture from Dr. W's nurse and nurse practitioner today. Lucy's MRI has already been scheduled for January and I immediately began to ask "what if" questions. They both stopped me mid-sentence and told me it was time to start living again. It was time to walk away from this. It was time to go in faith that all will be well. Never were more true words spoken, but they are not easy to swallow.

Apology

2011-11-16T18:51:00.000-08:00

To all of you who have diligently followed Lucy's journey over the past 8 months, I feel I owe you an apology. My blogging this week has been all but non-existent. It's not that I don't want to. It's just that, super honestly, I just can't get in the mood to do it. And what's interesting is that things have been going really well here. Great, actually. My overall outlook on life has improved and Lucy is rocking along beautifully. I just can't make myself sit down and write. Maybe it's like a writer having writer's block. Except my block is a self-inflicted don't-want-to-discuss-life block. I think maybe its just that I've poured my life onto these keys almost every day for 8 months and I'm just a little worn out. Either way, I'm not complaining (as I have nothing to complain about), just apologizing.

I had a great post with pictures and updates, but out of respect for my dear friends I am chosing not to post it tonight. All I would ask is that when you finish this, please say a prayer or have a moment of silence for our dear friends Brandon and Tessie. Cancer is an evil monster and it won its battle this morning in Lanie's life. As Christians, her parents can cling to the HOPE that Jesus gives knowing that they will be reunited with their daughter again one day. For the first time in months, their precious daughter was free of pain when she entered the arms of Jesus.

Hope is an interesting word. As a St. Jude mom, I will forever be changed by that word. You see, Hope is the motto of St. Jude. It's the very core of its existence. That hospital has given thousands of children Hope when the rest of the world turned its back on them. Hope is what motivates the doctors, nurses and researchers who have devoted their life's work to sick children. Hope is what encourages donors to contribute their hard-earned money so that more children may find Hope. St. Jude gives me Hope, but my God gives me more.

Tonight I pray that Lanie's family will rest in their Hope in Jesus Christ, just as I place my Hope in Him each and every day.

Lucy is scheduled to have her line removed at 11:00 tomorrow, pending good blood work. She will not be sedated for this procedure and it is going to be a tough one. I will post again tomorrow with a line-reomval update.

Prayers Please

2011-11-16T04:52:00.000-08:00

This morning our friend Lanie went to be with Jesus. Please lift her family up as they begin to try to manage their heartache and loss. No words I could offer will help, so this morning i only ask God to hold them in His loving arms.

Quick Update

2011-11-13T19:26:00.000-08:00

Life continues to move along at a rather rapid pace here in our home. We are amazed every single day at how much stronger Lucy is becoming. Each and every day brings something new. She still has a very long way to go, but she is fighting so hard. Today she walked around the house unassisted for most of the day. Holding on to walls, using furniture to balance...she is figuring it out. Maneuvering the stairs is still a daunting task. I will post more tomorrow (including pictures) after our trip to St. Jude. I expect her numbers to be well improved, but you never know. I am praying especially hard for a higher ANC. She cried her eyes out this morning because she couldn't go to church. With it being flu season, Dr. W thought it would be best to keep her safe until her counts increased. Once we get the all clear (hopefully tomorrow) we are going to try to do school a couple of hours this week, along with church.

Thank you all for your continued prayers. I would like to ask that you all please remember our sweet friend Lanie tonight. She is holding on to life, but each day is harder. Her parents are savoring every moment they have with her and I am still praying for a miracle for them (and us).

Each Day

2011-11-10T18:21:00.000-08:00

We are......taking one day at a time. Tuesday was a stellar day. Wednesday was not. Today has been better. Just taking it one day at a time. That's us. Learning to adapt to our new way of life.

Jack is a Busy Boy

2011-11-08T09:25:00.000-08:00

This past weekend Jack made three big discoveries. First, were the Mega-Blocks and the toy chest:

And my budding Beethoven discovered that we have our very own piano in our living room.....

It was a very messy and loud Saturday morning. In other news, Lucy discovered that she liked chocolate milk again! What a huge blessing. Do you notice the milk mouth?

Random Holiday Fun

2011-11-07T19:43:00.000-08:00

Just some Christmas fun!

A Day of Thankfulness

2011-11-07T18:30:00.000-08:00

Today I am thankful for 4 things: The moon, a dinner prayer, The Sing Off and Pink Pony Hot Chocolate.

--Tonight as I took Jack for a quick walk around the neighborhood, he discovered the moon. Watching that innocent, wide-eyed discovery brought tears to my eyes. He was absolutely fascinated.

--For the first time in 8 months, we sat down at the table....just the 5 of us. We ate a meal that Erik shopped for and I cooked. Ella set the table and Lucy said the dinner prayer. It was the most wonderful, amazing dinner ever. Even if it was just tacos!

--Music makes me happy. Especially accapella music. The Sing Off rocks!!!

--This year at the Book Fair, Ella chose a cookbook as one of her books. Remembering how I discovered my love for cooking at her age, I was thrilled to buy it for her. The first recipe she wanted to make.....Pink Pony Hot Chocolate. It was a great mixture of vanilla soy milk, grenadine and white chocolate. After Jack went to bed, we made it as a family. What a great way to end the day.

Quick Lucy update: Yesterday Lucy's counts were teetering on acceptable. This morning we went back and she had taken a pretty big dip in hemoglobin and platelets. Dr. W is still convinced that she is about to take off any day now. We did decide to do a blood and platelet transfusion today to give her (hopefully) one last boost to get her over the hump. She was also a bit dehydrated, so she received fluids. We will go back next Monday and next Thursday. If her counts hold both days, she will have her line removed next Thursday. I am not hanging my hat on that, but its at least something to work towards.

***Thank you all so very much for the wonderfully kind comments from my Sunday morning post. I am still just amazed how many people care for our family. God bless you all.***

Ta-Da

2011-11-07T09:08:00.000-08:00

Look who can eat with a fork....

We are working on saying "Ta-Da", too!

Daddy's Helper

2011-11-06T23:59:00.000-08:00

On Sunday, Erik built Lucy a ramp into the house so that she can maneuver her walker a little easier. I couldn't help but to sneek a few pictures of Jack right under his Daddy's heel the entire time.

My New Life

2011-11-06T08:55:00.000-08:00

(Before this post begins, I would ask that you all remember my brother in law Michael as he recovers from what appears to have been a major heart attack. Please keep him in your prayers along with Erik's sister Cheri and their 3 children. My wonderful in-laws, who have lived with us for the last 8 months, left rather unexpectedly on Friday to make a 13 hour trip to go take care of Cheri's family. We would have been lost without the help and support of Erik's parents and will forever be indebted to them. They will be greatly missed, but we know that they have another obligation to fulfill. I can't imagine my precious nieces and nephew without their grandparents there to help them through this tough situation. )
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Happy Red Cup to You!

The Thanksgiving and Christmas seasons have officially been ushered in, thanks to the Starbucks red cup. The mere sight of the cup makes me warm inside. Its as if a rush of emotions fills my soul and I start to long for holiday dinners, Christmas trees and flannel pajamas.

Here is my first red cup. Thanks to the St. Jude Starbucks, I did some life organization yesterday during Lucy's school with the help of a Gingerbread Latte. And you know what, that red cup started 2 different conversations with 2 strangers. All inspired by the mystique of this red cup. It was wonderful.

Oh, and Christmas music. I am crazy about Christmas music. Yes, I have already started listening to it and I'm not embarrassed at all. In fact, this is my current favorite...

Why yes, this is Mr. Buble. And yes, he is bringing me a gift this Christmas. Listening to him sing "All I Want for Christmas" put me right in the holiday spirit. But I have to admit that the same spirit I am yearning for is the same spirit that has my mind spinning and me crying out for help. Ever the sentimental type, I have never been one to hold back at Christmas. Last year I put up 7 trees, decorated my mantle, stairwell and the outside of the house as well. I adorn light fixtures with garland, mirrors with lights and the tops of my tv cabinets with snow villages. (and last year I had a 3 month old to boot!)

But today, I can honestly say that the thought of decorating doesn't make me happy. In fact, it seems to be just one more burden that my heavy arms can't carry right now. We will put up our family tree and the girls' trees, but that's it this year. Its not that I don't want to do the other things, but I know I can't this year. My priorities lie somewhere much more important. Besides, who wants to spend an entire holiday season telling a 14-month old "NO" all day long. That just doesn't seem much fun to me at all!

I have to stop now and say that in no way is this post meant to be a pity party for myself or a veiled cry for help. It is merely a week's worth of thoughts poured onto a journal that I will cherish for the rest of my life. When this is all over I want to remember the good days and the bad.

This past week was a whirlwind of events and emotion. We were at St. Jude on Monday and Thursday. Wednesday we began our OT and PT sessions here in town. Friday was another PT day along with Lucy's first day of tutoring by one of our favorite adopted grandmothers. "Gram" has agreed to tutor Lucy 3 days a week and we are so very grateful. (in case you are wondering, Gram belongs to BFFs Hyatt and Gracen). I know anyone reading this is probably saying "Seriously? A tutor for Kindergarten?" I have no doubt that this mother with a Master's degree could handle Lucy's curriculum. I have found out, however, that a mother with a demanding 13 month old can not give Lucy the attention she needs while trying to keep Jack happy as well.

That, and my Christmas revelations, are just some of the many "things" I have figured out this week. I have learned that a 13 month old can not go to a PT or OT session, I have learned that my anxiety will rear its ugly head when I least need it to and I have learned that I have to ask for help. LOTS of help. I have also learned that I am not near as accepting of Lucy's cancer and what its done to her body as I should be. I have learned that it, in fact, does NOT get easier as time goes by. Being home has been the most difficult, stressful and depressive part of this whole journey.

I have learned that no matter how hard I try I can not be a full-time mom to my three kids, medical assistant to Lucy, chauffeur to all things extra-curricular, grocery shopper and chef. I can not help Ella with her homework, while playing Legos in the floor with Jack while trying to do leg stretches with Lucy to help her overcome her foot drop. I can not engage my girls in creative activities like cooking or holiday baking when Jack needs me to play outside with him. I can not do a load of laundry without feeling overwhelming guilt about Lucy sitting for yet another 30 minutes on the couch while I try to keep our house together but should really be doing an OT exercise with her or helping her with her phonics reading.

And for those of you who home school and do this sort of thing everyday, kudos to you. But this post isn't about you supermoms. It's about this mom who was removed from her life 8 months ago and thrown into a horrific, nightmare of a new life. And then, when I had finally learned how to live in that life, I was thrown back into my old life which resembles nothing of what my old life was. I went from having 2 self-sufficient children and a 4 month old to having a 5 year old who can't walk, a 14 month old who is testing his boundaries each and every day and a super sensitive 8 year old who needs just as much attention as the other two (but often doesn't get it.) Throw in an extreme type-A personality, guilt and anxiety on my part and you've got a party waiting to happen!

Needless to say, I'm struggling. I sat down one day this week and wrote out what a typical day needed to look like for me. I divided the day into morning, afternoon and evening. There was medicine to be assembled and taken, line dressing changes, PT, OT, school and home PT exercises that have to be done 3 times a day. I also have to get out with Lucy 2-3 times a day and force her to walk with her new walker. Then there is school for Ella, after school activities, volunteer opportunities at school so that my child knows I am engaged in her life, church on Wednesday and Sundays and homework. For Jack its just about finding quality time to sit in the floor and play or read books. In there somewhere I need to take care of groceries, pharmacy runs, twice weekly trips to St. Jude, dinner preparation, laundry and baths/showers for kids.

And the worst part is, anytime I am doing anything that does not involve Lucy I am riddled with guilt that I should be doing more for her. Either that or overcome with fear that I might be missing some quality time with her that I might one day regret. My mind is totally numb at times.

My mom has agreed to help me in the mornings and I have hired a college student to come 3 days a week in the afternoons to help out. Mom will be able to help with Jack while I focus on Lucy in the mornings and Hogan will help with Lucy in the afternoons while I focus on Jack and Ella. It's not perfect, but just knowing that I have this plan in place has helped me breathe just a little easier. I pray that Lucy will quickly become more mobile and will be able to go back to school at the first of the year.
On November 4th, there was the most perfect entry in my Jesus Calling book. It said "Walk peacefully with Me through this day. You are wondering how you will cope with all that is expected of you. You must traverse this day like any other: one step at a time. Instead of mentally rehearsing how you will do this or that, keep your mind on My Presence and on taking the next step. The more demanding your day, the more help you can expect from Me...........I will give strength to you and bless you with Peace."

Wow! How likely was it that Sarah Young, the author, somehow knew me so well that she wrote this entry just for me? Not likely, I know. But I do know that God knew I would one day need to read it. I did read it and I wept. I wept tears of exhaustion and fatigue. I wept tears of anger and bitterness. I wept tears begging for mercy and grace. Now, I am re-reading it today with a open mind and heart. Trying to prepare myself for a lot of depending-on-God to get me through this week. Even with the extra help, it is going to be a hard one. Each day will present a new challenge and it is my task to learn how to handle it with dignity and grace. Some days I will succeed, many days I will fail. Either way, I will walk this road learning to lean on God and learning to ask for help from friends and family.

Thank you all for your continued to prayers for Lucy, me and our family. Lucy continues to grow a tiny bit stronger each day and is working really hard at eating. Some days are better than others, but she is at least holding her weight right now. She still tires very easily and requires a lot of rest. She works hard at OT and PT, but isn't always cooperative at home when I try to make her exercise or walk. I am having to walk a fine line between pushing her too hard and not pushing her enough. Its a tricky balance, but we are getting better at it every day. We hope that in 2 weeks her counts will stabilize so that Dr. W can pull her central line. Please pray that her body will pick up the production of white blood cells and that her ANC will rise. Last week her hemoglobin was 8 and her ANC was 300/400. The doctors are hesitant to give her any assistance in hopes that her body will start to do the work itself. Erik has Lucy at the hospital today, so we will have a better idea of how she is doing after lunch.

Here is Lucy with her new walker. I almost didn't post this due to how miserable she looks, but this is the look I get every time I make her do anything. It kills me to admit that my once aggressive, over achiever has become complacent and perfectly content to sit on the couch. I end up being the bad guy many times a day when I make her exercise or walk. Oh, she gets so mad at me. I know I have to do it, but knowing it doesn't make it any easier.

Fall Soccer

2011-11-05T18:13:00.000-07:00

The soccer season that seemed to pass in a blur. Ella had a great time and did wonderful. I was really proud of her determination and hard work. The last game of the year she absolutely shined. She dominated the field and I was there cheering her on the whole way. I was so proud!!!

Fall Fun

2011-10-31T20:45:00.000-07:00

We had a crazy busy weekend, but it was great. Friday night I went to Memphis with 2 friends for a nice evening of girl time and a great dinner! It was so hard to leave the house, but it was so great to have some time for myself. Saturday morning came early with Ella playing in a double-header soccer game. Saturday evening we all (minus Jack) went to a Halloween party at one of Ella's classmates house. It was a blast and we all got in the costume spirit!

(Me and my friend Amber)

Sunday night Erik and I surprised Ella with tickets to go see Taylor Swift in concert. She was so excited and felt like such a "big" girl. We went with Amanda, Gracen, Leigh and Maddie. The three girls were so sweet and acted so grown up. We went to dinner at The Majestic Grille and then walked down Beale Street on our way to the Forum.

(We ran into Ella James at the concert and Ella was pumped!)

I don't have a lot of pictures of Lucy from this weekend. Mainly because she spent a lot of time on the couch. She was really fatigued and quite honestly didn't have the desire to do much of anything. When we went to St. Jude on Sunday we found out that her ANC and platelets had plummeted since Thursday. She got a platelet transfusion and today we found out that her hemoglobin was 3/10th of a point away from critical. No wonder she feels so crappy.

The physical therapist told me today that after observing Lucy for the first time in almost 2 weeks, that she has developed pretty significant foot drop in both feet. I am pretty upset about it, but I know that with hard work and time she will overcome yet another obstacle. If she has not improved any in about a week or so she will likely be fitted for foot braces. She will hate wearing them, but they will be necessary to keep her safe and keep her from falling. The foot drop will only make her balance issues worse.

I had a rough day Sunday. Erik and Ella took Lucy to the hospital in the morning and Jack and I were alone at home. When he took his nap, I cried. A lot. Being alone in my house with my thoughts was not something I was really prepared for. I have always been a worrier and have allowed myself to sometimes go "where I shouldn't" with crazy thoughts about harm coming to my children. I guess most mothers have those fears. But for me, those worst case scenarios are no longer just fleeting thoughts. They are my new reality. They could actually happen. At one point in my crying I literally cried out to God, "please don't take my children from me." I know it was a selfish prayer, but it was all I could muster. God knew what was in my heart anyway. There was no reason not to speak it.

I guess I will struggle with fear of the unknown and fear of the future for the rest of my life. I hate that part about my future, but I will gladly take the anxiety, fear and uncertainty for one more day with each of my beautiful children.

Fall Fest

2011-10-26T19:31:00.000-07:00

Not a lot of words, just some pictures of some really adorable kiddos at our church's Fall Festival. If you are local and are looking for a great church, I'd like to invite you to attend mine. First Baptist Covington. We've got a lot of great things happening and a wonderful children's program!

(Ella and 3 of her best friends)

(Lucy and sweet Maddie)

Tonight I am so very grateful for life, for my children and for the healing that is happening in Lucy's body. God is good.

Shirt Deadline

2011-10-25T17:37:00.000-07:00

This just in.....

If you want a shirt for the St. Jude Marathon Weekend-Team Lucy, the deadline is tonight! That's right, TONIGHT!!!! Contact Kristie @ jklyons99@bellsouth.net

Meeting with our new PT tomorrow. Lucy is stoked! She did her 9 week assessment today with Mrs. Beverly and I am super excited to tell you that she is right on track! She was not behind in any area. That's my girl! We had today off and tomorrow, too. We go back to St. Jude on Thursday for what will, hopefully, be our last B Clinic visit. We should be transferred back to E Clinic then. After that, we are just in a holding pattern until her platelets stabilize at or above 50 and she proves she can sustain herself calorie-wise. I am so ready to see that central line gone, but I don't want to rush into anything that might jeopardize her health.

It's 7:30 and I am literally exhausted. I don't know if I am even writing coherently. I am going to bed.

Gratuitous Picture:

St. Jude Marathon--Team Lucy

2011-10-23T19:24:00.000-07:00

Ok, Team Lucy.....I just got a report that we have the largest team signed up for the marathon/half/5k. But only 20 people have ordered a t-shirt. WHAT????? Come on guys, we need to not only run (or walk) well, but also look great. The deadline is quickly drawing near, so please contact Kristi Lyons if you want a shirt.

jklyons99@bellsouth.net

Busy Weekend

2011-10-23T18:51:00.000-07:00

I have to say that every 24 hours since the beginning of last week has been almost miraculous when it comes to Lucy's recovery. Every day she grows stronger. Every day she becomes more mobile. And eating....well, at least asking for food. Lots of it! She takes bites here and there, but we consider her even asking for food a huge success! She knows what she has to do to lose the TPN and she is giving it her all.

Ella had a soccer game Saturday morning that I did not get to attend. It was Erik's turn to watch so I stayed home with Jack and Lucy. After the game Ella went to play with her friend "EJ" and had a blast!

Lucy went to the hospital and had to get Platelets (she was at 14!!!). That tied up Erik and Lu for most of the day, so Jack and I were home alone. While he napped I unpacked Target House stuff and tried to begin making sense of the home that I've been away from for almost 8 months. I wish words could explain the emotions I am feeling about being home. I honestly feel like a stranger in my house. Yesterday I just sat on the couch and looked around. It was as if I didn't belong here. I was looking in on someone else's life.

My life has not been here since February. Mine has been in the hospital, at Target House, on the road. Don't get me wrong. I am glad to be home, but its just not the same. Yet. I'm working to make this house my home again. All the people who make up my home are in it, but my head has just not reconciled with my heart yet.

And the exhaustion. Oh, the exhaustion. I think that by being home I have allowed myself to let my guard down a bit. In doing so, this crazy feeling of sheer fatigue has rushed over my body like a hurricane. When my head hits the pillow I am sleeping so hard and I usually can't stay awake past 8:30. 8 months of running on adrenaline has wrecked havoc on my system. I haven't run since I've been home and I miss it so much. I was doing so well and was quite proud of myself. Oh, well. There will be a time for that eventually. To be honest, its been hard to tear myself away from the kids at all since I've been home.

After Lucy and Erik returned from the hospital, they met up with Ella, Jack and me at my parents house. We had a Sunday School social there and had a blast. We ate hot dogs and chili, the kids played in the yard, we had a bonfire with smores and then went on a hay ride. The best part was that all 3 of my kiddos were there and had a great time. Especially Lucy. I think she had the most fun. She felt so normal being with her friends. I would be remiss if I did not add that she wore this costume ALL day yesterday. Even to the hospital. This is her Halloween costume.

(picture quality is horrible)

As I think about the road ahead of us I easily become engulfed in fear and fatigue. We have only begun the journey to recovery. Sweet Lucy has such a long, long way to go. PT, OT, school, eating, gaining weight, staying cancer free. We still need to see so many miracles in her life. I know that God is not done with her yet. He has some mighty big things in store for her and our family. I have to be patient and let God work His miracles in His timing. The saying below reminds me that when I have grown too tired and too weary, all I have to do is hand it over to my Heavenly Father. That's where it's supposed to be anyway. Not in my arms, but His.

We Have Lift Off!!

2011-10-20T18:25:00.000-07:00

Just as the dietitians said she would, Lucy asked for food last night. We watched with wide eyes in disbelief as she had 3 bites of a chicken leg and 2 drinks of chocolate milk. We sang her praises and made a HUGE deal about it all. This morning when we got to the hospital she picked out chocolate milk from Starbucks and had at least 10 sips, followed by 2 bites of turkey at lunch. Tonight she tore apart a half of a chicken leg. It is miraculous to say the least. We are amazed, bewildered and so very thankful. Please keep the prayers coming, because they are working!

Today I turned in my key to Target House. I packed up the last bit of stuff to bring home, donated food from the freezer and pantry to some appreciative families and prayed up and down the halls as I walked back and forth between the car and elevator. I prayed specifically that we would never walk these halls again as a patient, but rather as servants ministering to the needs of unfortunate families. I also said a special prayer over room 300. I prayed that God would bless the next family who stayed in that room, that He would bestow mercy and healing on their child and that the family would be able to feel the presence of prayer when they slept at night.

**Kristie, thanks for taking care of Lucy and letting her play with Justin while I packed. She had a wonderful time with her friend.**

I am so grateful for the friends we have made during our stay and ever so grateful to Target Corporation, St. Jude and the countless individuals that make that place run. The volunteer organizations alone would take a page to list.

****If your church or service group is looking for a place to plug-in, I would recommend Target House or Ronald McDonald House. The families staying in these houses look forward to the meals brought in and the entertainment provided to their children. **

I have a ton of pictures I took throughout our stay at the TH that I will post soon. I need time to organize them all.

The field trip yesterday was a success. While we nearly froze to death while we were there, we still managed to have a good time and take some great pictures!

Even the "adults" managed to have a little fun!

Busy Day Today

2011-10-18T19:04:00.000-07:00

Today was a crazy busy day. We arrived at St. Jude at 9:30 and went straight upstairs to be a part of the Christmas video/commercial for St. Jude. We were honored to be a part of it and Lucy tried so hard. She gave it her all, but it was exhausting. My mom got to watch the filming from "behind the scenes" and she just cried and cried. She said it was very hard seeing Lucy struggle so much. All she was trying to do was keep her head up and play some hand bells. But just the simple task of keeping her head straight and sitting up hurts her so badly. Oh, she has such a long way to go.

After a short day of filming, speech consult and medicine room visit, we headed to the Target House to start packing up. We worked for about 3 hours and got almost everything packed and brought home. One more trip and we will be done!

(This is Kristen, one of our favorite Medicine Room nurses. She has ministered to me in so many ways during our journey, including one particular Diet Coke day.)

Here are some pictures of our previous visit to the Audiologist. Lucy's hearing had changed ever so slightly. Nothing that we would be concerned about yet and probably will not equate to anything in the future. Just something to monitor as we go forward.

Ms. Stephanie measuring the movement in her ear drums.

Listening for the beeps and throwing the animals. If you notice how her head is thrown forward, that is how she stays a lot of the time. Her neck is a source of constant pain and we will be working hard to rebuild those muscles.

Lucy and Ms. Stephanie

Nanny, Lucy and Me at yesterday's B Clinic visit. No, she did not wear this hospital gown to the clinic visit, but it was our only option after she got sick.

After a VERY long day, we finally made it home. (Did I mention that I was sick as a dog yesterday?? Lesson learned, I can NOT take prescription pain pills. EVER. I vomited all afternoon and the hour drive home from the hospital was the only glimpse of hell I need to keep my life straight forever!) Anyway, after a quick stop at Target for some rain boots, we got home. We had a wonderful dinner tonight, all of us at home together, and then Ella and I made pumpkin pie. I hope the girls grow to love cooking as much as I do. She read the ingredient list and instructions and I pretty much let her do it all alone.

Oh, the rain boots? The are for the field trip I get to go on with Ella tomorrow. Nanny is taking Lucy to the hospital and I am going to spend some much needed time with my oldest angel. It rained all day today and the trip is to an outdoor pumpkin farm. It was 85 degrees yesterday and 50 today. Its' going to be cold again tomorrow( and very muddy). Should be fun?!?!

Lastly, Erik and I met with Lucy's doctor yesterday about the scans. All in all, we are all pleased with the results and were once again reminded of how far she's come. We won't be sharing a lot of details, as some things we need to keep to ourselves, but Dr. W said she was "happy." And that's about the best we could expect. We know that the radiation and chemotherapy still have work to do and more importantly we know that God is not done yet. He is the ultimate healer and physician. He is who we are placing all our hopes in.

Phil 1:6
And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.

Not a Great Start

2011-10-16T20:16:00.000-07:00

Welcome Home Lucy!

(Sign meticulously made with tons of love by Ella)

Lucy has been so sick since we've been home. It's been very difficult to adjust to being home with her being down. Her body hurts, she vomits non stop, and she sleeps a lot. We have hope that this will all resolve soon, but right now we are just trying to keep her comfortable. (Which is hard because all of her pain meds are taken by mouth and she can't keep anything down.) Chemo is a nasty thing.

We did have a few good hours on Saturday and she actually wanted to be outside for a few minutes. It was beautiful outside so we took advantage of the afternoon front yard shade and played. The girls painted nails and Jack was well, Jack. Into EVERYTHING!!!

We are back at St. Jude everyday this week. Erik and I look at scans tomorrow so I will report more after I see them. My hope is that by the end of next week we are home for good. I'm anxious to get Lucy started with her at-home teacher and PT/OT. All of this depends, of course, on her ability/willingness to eat. Pray for an appetite please. I'm so ready for this nightmare to be over.

Had to include this...we are slowly but surely getting ready for Halloween.

Stable is Good

2011-10-14T18:58:00.000-07:00

In a crazy twist of events, Lucys ANC hit 500 today. We are at home, all cuddled on the couch watching Disney channel with Ella. Lucy and Jack are asleep. It seems surreal knowing we are probably gome FOR GOOD!

Lucy's scans were good. Her spine looked cleaner than last time and her brain looked stable. In the world of cancer, stable is a good thing. While we would have liked to have heard a doctor declare her cancer free, we knew that wouldnt happen. So, we are happy with stable. Happy is not the right word. Grateful is a better word. God heard our prayers today and chose to show mercy on Lucy and us. For that we are thankful.

Big Day

2011-10-14T07:08:00.000-07:00

MRI and LP starting at 1:15. Lucy will go back for sedation workup around noon (that is if everything is on schedule.) We covet your prayers today and ask that you pray for no cancer and clear CSF (cerebral spinal fluid). I won't post again until we hear the results, which may be late tonight.

Please also pray for our sweet, sweet friend Justin. He is currently back for his MRI and LP as I type. Both his mother and I are nervous wrecks today. Today just might be a Xanax day.

Big, big day. Believing in an even bigger God!

Let Her Sleep

2011-10-13T08:37:00.000-07:00

I found the above on Pinterest last night. It was as if God was sending me a subtle reminder that I needed to be patient and wait. Let her sleep. It's ok. Don't worry.

And sleep she has. Going on more than 65 hours of almost straight sleep. She has awoken to use the bathroom and even woke up for an hour or so yesterday to try to play Wii with her Daddy. (that didn't go so well.)

Still running a fever, her body is just worn out. Her hemoglobin will hold for a day then plummet. Same for her platelets. Her white blood cells seem to be holding for the moment at 0.3 (normal range is 4.9-12.9) and her ANC is teetering around 100. She is receiving another blood transfusion today and will need platelets tomorrow.

When Dr. P came around this morning we had a long talk about my growing concerns and he reminded me that the team decided to push forward with the full dose of chemo this 4th round, knowing that she was barely meeting criteria. He even showed me the notes that Dr. G and Dr. T made that said "anticipate slower recovery than before." It was good to know that this was not alarming to them. I needed that reassurance this morning. Because as I was praying with all my heart last night around 3:00am, fear was creeping in faster than I wanted. Please continue to pray for Lucy. She still has such a long way to go.

------------------------------

In other news.....

Our friend Justin is already off of his TPN and should be headed home next week. Kellan returned home yesterday, too. It will be hard not having my friends, my confidants with me. Thank goodness for texting! My sweet BFF Amanda spent the night with me, giving my dear mother a break. Mom will be back soon and I am going to go have lunch with my new friend Melissa to discuss Lucy's Make A Wish Trip! I am really excited about it, but I just pray Lucy is up to it by December.

Jack came to visit yesterday. Of course, he won the heart of every woman on this floor and kept us BUSY! Ella went on a 3 day trip to St. Louis with Erik's parents. She had a blast and declared that it as the "best 3 days of her life!" Can't get any better than that, huh? They even ran into my wonderful friend Nicole and her family at the City Museum. She had a blast spending her last hours playing with John Owen, Jonah and Mary Claire. I'm pretty sure my FIL was pretty glad, too. I think Ella was wearing him out! She's got one speed and that's full throttle.

Worth Sharing

2011-10-12T13:16:00.000-07:00

Thank you to the sweet person who sent me this today. It was just what I needed:

11 THINGS I WISH MY CHILD’S DOCTOR KNEW.......  

1. Please don't ask me to leave my child's side. I can't rest or eat knowing that something could happen while outside the safety of my arms. I need to be there.  

2. I need to be part of my child’s care team. I am there everyday. I am used to being in charge. At home, no nurses or doctors are telling me what to do. Help me be a part of the team.  

3. I am not stupid. I may not understand all the words that you use, but I am willing to learn. Teach me. Help me understand what you are talking about. What could be more important for me know?

4. I am not overprotective. I am a parent. I see my child struggling to survive. I was given this child to protect and love. If I am doing something excessive, then kindly, gently tell me that it is not necessary. But do not tell me I am overprotective. Those words are fighting words. 

5. I don't know if you believe in God or not, but I hope that you do. While my child is under the care of your hands, I am in the waiting room asking for God to guide your hands and your mind so that you can save my child’s life. I pray for you.  

6. Caring for a child with a chronic illness isn't what I bargained for when I was planning a family. This is the hardest thing I have ever had to deal with. I am not just my child’s parent. I have many roles and wear many hats. Please understand this problem has touched every facet of my life and is challenging me in ways that you cannot possibly understand or see.

7. I am grieving. This is not what I planned. My home is waiting for my child. Clothes hang in the closet; toys and books are waiting to serve their purpose. Please be kind while I try grasp what all of this means and while I mourn the life my child should have had.  

8. I trust you. I have handed over the most helpless and important person in my life. I know that you are not God, but I am hoping that through you, God will work a miracle.  

9. I have hope. I don't care about statistics. There aren't two children here at the same time, having the same surgery. There is one, and that is my child. Don't tell me that you don't think that my child won't make it. Tell me, that you'll do everything in you power to help my child survive.  

10. I know you don't have a crystal ball. When I ask you for my child’s prognosis, I am asking you for reassurance. Every parent wants to be a grandparent one day. Don't get irritated when I ask you about the future. Tell me I'm doing a good job today.  

11. If it is God's will to take my child too soon, don't be afraid to let me see you cry. Your tears will help to cleanse my wounded heart. I need to know that you cared.  

----UNKOWN AUTHOR... 

Nothing to add. This person summed up everything I am, everything I feel and everything I hope for.

Stupid Rules

2011-10-11T19:43:00.000-07:00

Sometimes i think the doctors and nurses around here should be shot. Or at least have to walk in a paarents' shoes for a day. Whoever thinks its a good idea to wake a sleeping child, one with a 103 fever, to make them stand up and get a weight check is insane. And of course it was me, not them, that had to lull her back to sleep after she was so upset she vomited all in the bed.

Today has not been a good day. Baby girl has run a fever off and on, which means extended antibiotic and it pushes our 48 hour fever-free mark out even further. Lucy slept for more than 24 straight hours, only waking to potty. Hemoglobin was 6.8 this morning. She needed blood so badly and it took until 3:00 this afternoon. They are just now hanging her platelets.
Sometimes i want to scream about the speed at which things are done here. Good grief!

After only waking for about 2 hours she is back to sleep and I am getting settled in for another restless night on the couch. I long for my home and family so badly tonight.

Vote for Ivee

2011-10-11T08:00:00.000-07:00

The first family to reach out to us during our nightmare at LeBonheur was the Foley family. Their daughter was there having her second brain tumor resection while Lucy was undergoing her first, and hopefully only. We have since grown to love the Foleys and have so much respect for them and their love for God. Their faith is truly inspiring and their daugther, Ivee, will always remain in our prayers. She is an amazing little girl who has survived and flourished through more than any doctor ever imagined. Her parents call her Ivee the Blessed. And that she is!

This is the excerpt from the voting page:

"Ivee the Blessed"
Nothing in life can prepare you for the day that a doctor walks out of surgery to tell you your 7 month old daughter has a malignant brain tumor. That because of the deficits of this disease and surgery, the life you dreamed of having with her is not the life that you will get to live. For over 4 years, Ivee has endured 6 months of chemo, 63 doses of radiation, and 15 surgeries. She has never let her deficits keep her down. She has survived and prospered despite all she has endured. She melts the heart of everyone she meets, can make you laugh with her sweet expressions and funny sense of humor, and she has inspired her community to raise funds for childhood cancer research. But mostly she has taught me to be a better person. To be thankful for every blessing, big or small.

Please follow this link and VOTE for Ivee. Her mom has written as story that will hopefully appear in Reader's Digest. Thanks friends!

Round 4 Day Plus 12

2011-10-11T07:50:00.000-07:00

Day plus 12. That puts u approximately 3 days away from Lucy's counts recovering. That is if she follows the normal cycle, of course. The trend over the last 3 courses has been that days 11, 12, 13 are her worst. Her body is in overdrive trying to produce cells and while they are grafting it can make for one very sick little girl. Yesterday we had to put her on a Morphine pump early in the morning. I knew what to expect the next few days, so I didn't even waste any time asking for one. I just want her to be as comfortable as possible until this weekend, when she should be fully recovered. The continual dose is so low that they are able to just stop the pump without even having to taper down.

She did OT yesterday afternoon, but other than that she was in bed all day until around 4:30. Mom and I convinced her to go for a stroll and I think it did her (and us) a world of good. We strolled around the hallways and then even went outside for a few minutes. We read LOTS of books and then came back inside to do an art project with the college volunteers that were here last night.

(look! it's me)

Dr. T even made a visit while we were doing our art project. It was a vision to behold I might add. Dr. T is at least 6'4", if not taller. He folded himself up somehow and sat down in the kiddie chairs that we were in and we had the best talk. I am going to miss him when we are gone. He is a very straight-forward doctor and doesn't fill you with a lot of fluff. I appreciate that in him and respect him very much. He is our primary doctor in B Clinic. Good Lord willing, we will only see Dr. T when we pass him in the halls or specifically make a point to visit. I hope to NEVER, EVER go back to B Clinic again!

One of the things that I was worried about was Lucy's immune system going forward. I knew that she may never have a fully functioning immune system, but to what extent I was not sure. He assured me that, although no major research had been done on Autologous recepients, she should be fine. He said that what they did know was that the cells in our body that have memories (yes, our cells have memories) were not harmed in any of the harvests or transfers. For example, we will not have to re-immunize Lucy because the cells that she got back of her own will remember how to fight those illnesses that she had received imunizations for. Isn't that amazing. I asked about her ability to fight the flu and immuno-supressing diseases like Mono. He was not concerned and that made me feel so much better.

Well, it looks as if Lucy might sleep the day away. I expected that though. Day 12. Usually happens! Mom and I are going to take turns sitting in here with her today. She is exercising now and I am going to go for a run soon. Being on the other wing of the hospital has is advantages and disadvantages.

Pluses:
Lucy can have visitors
Lucy can leave her room
Lucy can sleep with her stuffed animals

Negatives:
I don't have a bath/shower. There is 1 for the whole floor to share!
I have to sleep on the couch
We are right by the nurses station and it is LOUD and the lights are BRIGHT
The rooms are so very tiny in comparisons.

That being said, I would gladly trade my creature comforts for her freedoms. Would do so without a blink of the eye.

Go Tigers

2011-10-10T17:44:00.000-07:00

My one and only tailgate of the season. No game for this Momma. Babies to care for at home!

Pumpkin Run 2011

2011-10-10T08:23:00.000-07:00

(Only a portion of Team Lucy.)

Calling the team effort a success would be the understatement of the year. It was a HUGE feat of accomplishment and I was so proud to be a part of Team Go Lucy Go. I was honored that so many people choose to support LeBonheur Hospital in honor of my sweet girl.

Statistics:
With your help I was able to raise $2,100
Team Go Lucy Go came in second overall be raising $5,976. Our goal was originally $3,000!
93 total team members

Wow! I was so amazed at the support. I can't thank you all enough. It was also so awesome meeting people that I had chatted with through email and through this blog. I got to hug so many necks (I am a hugger) of strangers that have been diligently praying for my sweet Lucy and our family. When it was all over I was still in amazement. It was a lot to take in!

(This banner hangs above Lucy's bed in her room at home. A sweet stranger sent it to her. I may never know who sent it, but THANK YOU! )

(This is Brandy. She was our favorite nurse at LeBonheur. She held my hand through many of my worst and darkest moments. She was our night nurse, so we would often cry and laugh together at 2:00am when sleep alluded me. In those first weeks, I don't think I slept ever! I will always, always remember Brandy and what she meant to our family. God sent her to be our angel and even though I couldn't make her my sister-in-law, she will be a part of my life forever.)

(The picture at the top left of this collage is of our friend Kellan and her mommy and sister. Kellan is the one I have asked for prayers for and she is doing great. Her mommy crossed the finished line with tears streaming, amazed that Kellan had actually RUN more than 2 miles of the race. This is a little girl who after chemo couldn't walk to the other side of the room. It gives me so much hope that Lucy will one day have the energy, stamina and strength to live a normal life. Way to go Kellan!)

I hope that next year our team will be even bigger and will raise even more money for LeBonheur. The whole experience was wonderful. I would be remiss if I did not journal for my own memory that I had prayed all week God would get us through the race without Lucy getting a fever. Well, Erik's parents took Lucy on to St. Jude for her GCSF and lab work Saturday. She had to be there at 11:00, and the race was over by 10:30 or so. Wouldn't you know it but as soon as Erik got downtown he called to tell me she had a fever. Of course I was bummed about going inpatient, but God answered my specific prayer. I am so grateful for that.