Bath Time

One of the most "normal" things that we do around our home is bath time.  This singular event was the one thing I honestly missed most while Lucy was sick.  Bath time in our house is about laughing, singing, and pure silliness.  Erik turns on his i-Pod and the girls and Jack sing and dance.  Bath time has always been a big deal to the kiddos.  I am so very thankful to have this "normal" back in our lives.
   (and a brag on my husband....for almost 9 years, Erik has done bath time every night.  He's pretty                                     awesome like that.)

Race Time!

The time is getting near!  You can keep up with all the race happenings by following THIS blog!

Ski Trip 2012

(this is my second post about our trip.  Somehow I managed to delete the first one)

This year's ski trip was two years in the making.  We were scheduled to leave for our trip last year one week after Lucy received her diagnosis.  We encouraged our friends to go without us, but I knew they wouldn't.  And they didn't.  They were right there by our sides every day.  Every step of the way.  Erik and I have been very blessed throughout our lives with wonderful friends and we were happy to share this year's ski trip with 10 of them.  

 

As if to remind me that my work is not complete, I have spent my morning at the doctors office with sick babies.  

 Ella has a bad sinus infection and is now on breathing treatments.  

Lucy still has an ear infection (just finished 10 days on amoxicillin) and is about 1 day away from a sinus infection.  On the 1 year anniversary of Lucy's diagnosis, let me just tell you I did not welcome the vomit that  she woke up with this morning.

And Jack is about 3 days into the antibiotic he is being treated with for his sinus infection.  His Daddy is too.  Thank God I am well.  Mommy just doesn't have the time to be sick.

Everyday is a reminder to keep life in perspective.  Thankful today for sinus and ear infections.

Rose Colored Glasses

I've always heard the saying "seeing life through rose colored glasses" but I've never really stopped to think about what it really means.  Not until this week.  I've actually given it a lot of thought.  The English novelist Thomas Hughes was the first to record the phrase in 1851.  It means to see things in a favorable light--to have unmitigated optimism.  Have you ever known anyone like this?  For the most part, I have always had a bit of rose colored tint to my life.  In most situations I have been able to see the positive side of the problem, to see the brighter horizon, to look past the negative.  And for the most part, even after this past year, I am still a lot like that.

However, the tint is gone a bit.  It has been made dirty by the crystal clear glasses that I have worn for the past year.  365 days of in-your-face reality.  What I have witnessed, what our family has endured over the past year will stay with me forever.  The tears I have cried, the prayers I have prayed, the friends I have made and lost....those are the things that change your perceptions of life.

I have seen children die.  I have seen more suffering in the past year than anyone should witness in a lifetime. I have seen the most innocent of God's creation have their lives ripped apart before they even turned one.  I have met so many broken-hearted mothers and father.  Parents who would give their lives in a moment for their child to have another chance at life.

Those are the things that I still don't understand.  Those are the things I still question every, single day.  I don't get it.  I never, ever will.  Cancer is evil.  It has no shame.  It will destroy a life, a family and will never have remorse.  Children are not supposed to die.  They are not supposed to suffer.  It's just not the way life should be.  And these are the things that I have seen through my crystal clear glasses this past year.  No amount of tint could ever change that.

But  I have also been blessed to witness God's miraculous healing first hand.  I have been literally pulled from the depths of despair on sevearl occasions by the hand of a loving God who has never forsaken me.  I have seen my faith blossom (although I know it will never be complete).  I have learned to let go of compulsiveness, control and fear.  I have learned to walk day by day trusting in God to guide my every step.  I have grown to cherish the now and live for the moment.  I have been transformed.  I am a new person.  I still have my moments of "old me," but the change in my life has been amazing.

So while the past year was devastating, I know I am a better person for having lived it.  So life gave me a raw deal for a while.  So what?  It's what you do with it that counts, right?  The experiences, the lessons learned.  I now know how to be a friend to those who have lost love ones.  I now know what to say to a parent that has a child with a life threatening illness.  I know how to pray for mercy, faith, peace and healing with unbridled passion.  I have come close to knowing what it would feel like to be separated from a child forever.  I know how to appreciate the small victories in life like elevated ANC, central lines that don't have to be replaced, 2/10th of a pound gained, only vomiting 5 times in a day.  Learning to appreciate those little victories has made reveling in the big ones that much sweeter.

And while I may not be walking with rose colored glasses these days, I do walk through life with the lenses of appreciation.  I can honestly say that I cherish every moment with my children.  Don't get me wrong.  I stay tired, I often get frustrated, I sometimes snap too easily and I even find myself longing for bedtime to arrive.  But I still cherish every moment.  I love my children more today than I ever have.  Unless you have almost lost a child there is no way you can ever understand what I am saying.  You just can't.  There is an urgency of appreciation that I will forever live with.  And I am SO grateful for it, too.  I choose to view it as a gift.  It's something I have been given and I wear it with pride.  It's like a badge of honor.  Lord, may I never take your gift to me for granted.

This is the Bible verse that I am claiming for the rest of Lucy's life.  Our hope is in Him, our faith is in Him.
                           Luke 8:50  "Don’t be afraid; just believe, and she will be healed."

February 23, 2011 will forever be the day that changed all of our lives but the way we have chosen and the way we will choose to handle every day since will define our lives.  I may not live the rest of my life with unmitigated optimism, but I pray that I never lose all of the rose tint from my life.

One Year Ago

While the 23rd is the actual anniversary, one year ago today my life changed forever.  One year ago today I drove Lucy to Memphis for a "quick" doctor's visit.  By 2:00pm we were thrust into the depths of chaos, fear and confusion.  One year ago today OUR lives changed forever.  Not just mine, but the lives of Erik, Ella, Jack and mostly Lucy.  Our family, our old friends and the new friends we have made across the world through this blog.  We have all been changed.  Some days I know it's for the better and some days I still question.  A LOT.

This is not the post I have been wanting to write, but it's all I can do right this moment with Jack helping me.  It's time to get Lucy to OT and then our day of therapy, tutoring and trials begins.  I couldn't start the day without saying thank you to you all.  Thank you to all the ones who have showered our family and our Lucy with prayer every single day.  In all honesty, we still need it.  Many days are hard.  Most days I still worry.  And every day we need your prayers.

As we begin the Lenten season today, this day of such a sad anniversary, I know my moments will be spent in reflection about where we were, where we have been and where we are going.  Physically, mentally, emotionally and spiritually.  I am giving up Sonic for Lent.  (That's a whole other post in itself.)  I am also taking on the task or writing letters of thanks and/or encouragement to 40 people during the 40 days of Lent.  This was not my original idea, but I sure have a lot to be thankful for so it seemed like a great fit for me.

Today is the day.  The day that changed our lives forever.

Ugh

So my Internet is messed up at home. I have a post I want to write and I've been praying over it for a few days. Guess it will have to wait one more day. Because it is was too long to type on my phone.

Today and tonight I have been praying so hard that God would convict me about what I should do/give up or both for Lent. Being Baptist, we don't really participate in Lenten activities. But I started about 10 years ago and plan on teaching my children to do the same. To me it is a great time for reflection about Jesus's sacrifice on the cross for our sins. Me giving up caffeine or pledging to read my Bible for 40 days in a row seems like such a small sacrifice.

I liked what a blogger said about us not needed to give up something in order to pay a pentence. That is what Jesus did for us on the cross. There is nothing in this world I can give up to try to gain pardon for my sins. And because of that I am eternally grateful for God's redeeming mercies.

However, from my experience it seems that giving up something that is important to you seems to draw you nearer to the cross each time you are reminded that it is gone.

That being said, I will make my decision by morning. I will be giving up something and vowing to do something"good" during the 40 days of Lent.

Test

Blogger is messed up online. Trying to see if this will post.

No pictures.... Just a memory

Exactly one year ago today we spent the day riding 4 wheelers and Rangers with our closest friends. Afterwards we ate dinner at Nelson and Amanda's house. If I remember correctly we had burgers and hotdogs. Lucy was recovering from a stomach bug and
we had to leave early that night because she wasn't feeling well.

Tonight we had dinner at Nelson and Amanda's house. One year to the date. We ate hotdogs and burgers. No one even realized how significant today was. It was just another night to us. The way it should be. The way I pray it will be forever more.

But we did spend a few minutes in reflection about how much all of our loves have changed. We talked about the phone call that change all our lives forever. Sarah and Amanda were on a school bus together coming home from a field trip. Erik was at a lunch meeting. I was just a stay at home mom who was put out be because of an ongoing stomach bug.

Tonight as I type on my phone laying on bed I'm thinking about the medicine I just gave Lucy, the feeding tube I just cleaned and attached, the bald head I kissed goodnight and the 8 year old sleeping beside her; keeping watch as her baby sister sleeps.

This was not my life one year ago. My life was perfect one year ago.... or so I thought.

Our pastor talked this morning about the sifting process that God allows us to go through at times in our lives. He is sifting the useful parts of us from the worthless parts. He is purifying the finished product. While I know I am a long, long way from a finished product, I feel that this past year has begun to prepare me and our whole family for something so much greater than even our wildest imagination.

February 23rd is the day that we will always remember as Lucy's diagnosis day. So many memories are attached to this day. Horrible, painful memories.

But as I look back tonight I am reminded of the miracles that have been performed for Lucy and the grace that has been bestowed upon our family. As the road map of our lives is laid out before us it is evident that God has designed each step of our lives to perfectly fit within this huge master plan he has created for us.

It has been humbling to watch things fall into place in such a way that can not even be explained. Our lives are a masterpiece in the creation. I know this full well.

We are blessed. So very blessed.

Lucy Goes to DC

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

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

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

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!

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.

What I Do......

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

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

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.)