Thy Will be Done

This is not the first time that a very dear sweet beautiful girl brought me to tears.  My best friend and one of her beautiful daughters tend to send messages, quotes, texts or calls just when I need them.  Today when I was feeling a little overwhelmed and a little defeated, I received a text telling me to listen to a song.  I played it right away and listened to it in the background and thought....that was nice, and then I continued on with my day.

A few hours later I felt this ache in my heart and stomach and just sat down to take a minute to myself.  I decided to listen to that song again.  Here are the lyrics:

I am so confused

I know I heard You loud and clear

So, I followed through

Somehow I ended up here

I don’t wanna think

I may never understand

That my broken heart is a part of Your plan

When I try to pray

All I’ve got is hurt and these four words

Thy will be done

Thy will be done

Thy will be done

I know You’re good

But this don’t feel good right now

And I know You think

Of things I could never think about

It’s hard to count it all joy

Distracted by the noise

Just trying to make sense

Of all Your promises

Sometimes I gotta stop

Remember that You’re God

And I am not

So

Thy will be done

Thy will be done

Thy will be done

Like a child on my knees all that comes to me is

Thy will be done

Thy will be done

Thy will

I know You see me

I know You hear me, Lord

Your plans are for me

Goodness You have in store

I know You hear me

I know You see me, Lord

Your plans are for me

Goodness You have in store

So

Thy will be done

Thy will be done

Thy will be done

Like a child on my knees all that comes to me is

Thy will be done

Thy will be done

Thy will be done

I know You see me

I know You hear me, Lord

This beautiful song speaks volumes of what I am feeling. This song touched my heart and comforted my soul.  They will be done are the words that I always come back to.  They are words that I have a hard time with, words that hurt me, words that scare me because his will might not always be mine, but I know it is his will.

I miss this sweet family terribly. Every single one of them has made a lasting impression on our family.  Our families are intertwined and all of us are best friends.  Military life is hard.  We were blessed with meeting some amazing people in New York 6 years ago, some of them ended up being my best friends.  This beautiful family has been there for ours every moment of our journey and even though the Army took them all the way to Alaska, we have been fortunate enough to visit each other and talk regularly. M, I can not even begin to describe to you how special of a place you have in my heart.  You have a beautiful light inside of you that has always amazed me.  You have a gentle fire in your soul that has the ability to change people.  I am forever thankful for your random messages, quotes, and songs.  You have no idea the amount of time you have calmed my heart. I love you sweet girl. thank you for reminding me today a very important message. I miss you and can not wait to visit this fall.

We Get There When We Get There

When Katie got sick, I just couldn't understand it. I mean I understand that it happens.  I have seen friends, family, loved ones, Television, snd so many other examples of people going through this type of situation, but never thought it would really happen.  But I couldn't understand how this beautiful, innocent, devoted, loving little girl could be given this trial.  I felt hopeless.  I felt alone.  I prayed hard, every moment of everyday, and then I became ever more angry because our prayers were not being answered.  I started to lose my faith.  I started to find more comfort in being angry that anything else, because it seemed to me that my anger was fueling my will to fight for Katie.  But I didn't see everything that was happening around me.  

I recently (and admittedly, DUMB IDEA) watched the movie Miracles from Heaven.  This movie is about a little girl who is perfectly fine and then one day wakes up sick and is diagnosed with a rare incurable disease.  To say the least, this movie hit home for me for so may reasons.  The emotions the mom went through, the battle she fought, the trips she had to take, the fights she had to have with doctors...been there and done it all.  In that movie there was a quote she used from Albert Einstein "There are only two ways to live your life.  One is as though nothing is a miracle, and the other is as though everything is a miracle".  

That quote is so very true and what she said following that quote is also very true for me.  For quite sometime I was not living my life as if everything were a miracle.  I mean how could I?  Katie is still sick, where is the miracle in that?  However, because of my anger I missed a lot. There truly were and still are miracles all around me. Miracles have manifested themselves in small strange ways, like someone just passing though your life at the right time. Miracles are people who come into your life and are there for you no matter what, and at the exact moment that you needed them.  Miracles are people from all over the United States checking in with us to see how Katie is.  Miracles come in so many shapes and sizes and just because my prayer that Katie will just wake up and be perfectly fine hasn't happened, that doesn't mean God isn't hearing me or that miracles aren't still happening to us. Miracles are from God, and the fact that there continues to be small miracles and victories in our life shows me that God is hearing me. I wish I had the answer for why Katie was chosen to be on this path, or why so many children suffer, but I do not.  One thing I do know is that God has stayed with us even when I doubted him.  I have come to realize that when you are faced with something like this, you do doubt, you are angry, you yell at God, you swear you are done with him, think you do not need God in your life, but then "we get there when we get there".  

Everyone has their own way of handling this, some people never lose their faith, some do and eventually find it again, and some do not.  I have become a firm believer that we do get back to God and Faith when we get there, and it happens because deep down, in our heart and soul we let fear and anger hide it, but God and our my faith was never gone. Miracles are God's way of letting us know he is with us, and so for every small miracle that has come into our life, I am thankful for you!

.

New territory

When you get a diagnosis for cancer or any disease you immediately know that it is life changing for that person.  You spend so much time focusing on the person affected making sure that you can be there for every step of their battle.  When someone gets sick, it is human nature to want to help and take care of that person.

From the moment we found Katie's mass, I became her advocate, one of her biggest supporters, and she became my drive and purpose in life.  Every step of Katie's battle I have fought along side her and hoped that I could bring her some peace and comfort.  We have spent that last 37 months and 17 days fighting.  Fighting for her, fighting with her, fighting for a cure, fighting the system, fighting doctors, fighting for a miracle....just fighting with everything we have to change Katie's path.  When Katie was granted a small break from all the medicines, needles, labs, and appointments my heart felt relieved.  The fighting can stop for just a little bit and we can get a break.

When I finally slowed down, stopped fighting, and sat back for the first time in over 2 1/2 years, thats when I realized how much damage has occurred.  All the time I have spent away with Katie at appointments, chemotherapies, hotels, hospital stays, road trips for fundraisers, or Castleman's events, I always looked at it as Katie and I had the hard job....we had to leave.  But I never stopped long enough in all the chaos to look back and see who had to stay behind.  Michael and I from day one laid out our roles in this new life we had.  I knew that he had to work, and even though his heart was in pieces every time Katie and I loaded up into the car for our 4 hour drive to her oncologist, he knew he had a job to do.  He has always been our protector, our soldier, our hero, and our provider, and I know that a large piece of his heart broke when he realized he couldn't protect Katie from this.  However I also know that we had each other to lean on and talk everything through.  Even when he couldn't be with us the updates were constant and the FaceTime conversations were frequent.  We are adults, I know that no matter how much our hearts ache, we can and will get through it.

What I failed miserably to see is the damage all this was doing to David.  My beautiful, kind hearted, loving, compassionate son was watching me leave with Katie in tow over and over again and I stupidly missed all the signs that he was breaking.  My ability to handle everything as it comes and stress about it later personality backfired.  I was handling Katie, I was helping her and carrying her through her battle, all the while allowing my son to endure a battle and fears he could not explain, and with no one to help him through it.  I thought I had done a great job explaining to him what he needed to know and sheltering him from the worries that no child should have to know about.  What I missed, what I somehow failed to see, was that all those fears were there anyway, and without having someone to talk him through it, he formed his own thoughts about them.
We have had a hard month learning all of David's emotions.

 He is angry, he is scared, he is confused, and most importantly he feels alone.  How did I let this happen??  He is so scared that God will take Katie away from him, that one day I will leave with her for her doctor appointment and not bring her home.  He is scared that he will have to see her get sicker or that he will have to visit her in the hospital again.  He is also so angry.  Angry that she is sick, Angry that I have to be away with her, Angry that I have to spend more time with her, Angry that he has to be scared.  He is so confused about why this is happening.  To a child, only older people get sick, only older people go to Heaven.  He doesn't understand why his sister has to be sick.  He is angry at himself because they are typical siblings who fight.  But when they fight and he gets mad at her for being in his way he immediately gets angry at himself for being angry with his sister, because what if that is the last time he gets to fight with her.  All the things I have worried about, I never imagined that my 8 year old would also be feeling them. My heart hurts that I missed them.

How did I allow myself to get so wrapped up in Katie's fight that I missed Davids??  How do I mend his heart, calm his fears, remove his worries, and rebuild the little boy we had 0ver 30 months ago?  And selfishly, how do I make it through the hard conversations?  It took everything in my being to make it through the conversation we had when he asked me if Katie had to go to heaven soon.  It took everything in me not to break down in uncontrollable sobs when he said in his bedtime prayers that he was thankful that God gave him another day with his sister.  This year will not be an easy one.  Though Katie is in a good place care wise, and we have found a medicine regimen that seems to work for her body right now, we have so many other struggles occurring alongside hers.  Continue to pray for our family, especially Katie, but also my beautiful David.  His emotions are high and with the upcoming deployment and endless nights of training for Michael he is feeling pretty defeated.  So, as I continue to walk on Katie's path with her through her battle, I am now finding a way to walk many paths at the same time.

I can just be me.....

I came across a song by Laura Story called blessings two years ago.  (I've shared those lyrics with you a long time ago).  Recently I have felt a massive weight on my shoulders and heart and started searching for comforting words....I came across another song of hers that I love.  I truly have been doing all that I can to hold it all together, trying to be braver than I could ever be.  

I Can Just Be Me

I've been doing all that I can

To hold it all together

Piece by piece.

I've been feeling like a failure,

Trying to be braver

Than I could ever be.

It's just not me.

So be my healer, be my comfort, be my peace.

Cause I can be broken, I can be needy,

Lord I need You now to be,

Be my God, so I can just be me.

I've been living like an orphan,

Trying to belong here,

But it's just not my home.

I've been holding on so tightly,

To all the things that I think

Could satisfy my soul.

But I'm letting go

So be my father, my mighty warrior, be my king.

Cause I can be scattered, frail and shattered,

Lord I need You now to be,

Be my God, so I can just be me.

Cause I was lost in this dark world

Until I was finally found in You

So now I'm needing, desperately pleading

Oh Lord, be all to me

And be my savior, be my lifeline, won't You be my everything.

Cause I'm so tired of trying to be someone

I was never meant to be

Be my God

Please be my God

Be my God

So I can just be me

So I can just be me

I can just be me.

A Letter to My Sweet Fierce Katie

*I wrote this letter a year ago while I laid in bed next to Katie.  She was receiving her first IV chemotherapy treatment and had a bad reaction.  As she screamed in pain my insides felt like they were dying.  This whole experience was new territory to us, but I have always prided myself on my independence ad strength....that night broke me.  There wasn't anything I could do but hold her and sing to her and try to talk to her through her screams.  They administered morphine and once that kicked in and she fell asleep I cried harder than I have ever cried before in my life. I didn't want to wake up my husband, it was so hard for him to be home and not with Katie.  He is one of the toughest men I know, my soldier and hero, but to see the fear in his eyes when we left the night before for the hospital made me realize how much this has changed us both.  He was finally asleep at home with our 1 year old Madi and our 7 year old David and I didn't want to cry to him or risk waking the kids so I wrote Katie a letter.  Its a jumble but that is because it just was flowing out. *

My Sweet Katie,

I want to tell you how much I love you and how so very thankful I am that God loved me enough to bless me with you.  I never imagined that several years ago someone so small could change my world in such a big way.  You have grown to be such a beautiful little lady and I am so proud to be your mama.  Tonight my heart was heavy worrying about how I would one day explain to you the life you have had.  My heart was broken thinking about all the years ahead that we will have to do this.  You see, right now I am lying in your hospital bed next to you watching your chest rise and fall with each breath. 

Today was scary, a day I wish we never have to repeat.  Today was your first dose of IV chemotherapy.  Now that the morphine has finally kicked in and you are resting comfortably I couldn’t keep away the tears.   Mama feels so lost, scared, broken, confused, and sad.  I have held this all in for so long and I just cannot stop these waves of emotions.  My beautiful sweet girl, my heart is breaking because as your mama I am supposed to be able to protect you and keep you safe and I cannot do that.

As your mama I was supposed to spend all these years teaching you so many amazing things, all the while encouraging you to be a carefree child with not a worry in the world.  Though some of that has happened and will continue to happen, I feel like I cheated you because we have spent so much time learning about how to take care of you, talking you through medicines, needles, blood work, surgeries, doctors, hospitals.  My heart breaks because I know right now this is your ‘normal’ and one day in the not so distant future you are going to be old enough to understand this isn’t normal.  One day a time will come where all the decisions daddy and I have made for your health will have to be explained to you.  I know that one day this will be hard for you, and I worry that the light and spark in your eye will fade.  My sweet girl I wish with every last breath I have that I could take this from you and carry it for you, that you would never have to worry about tomorrow, but I cannot.  What I can promise you is that for every single second of your life battling Castleman disease I will be standing right beside you battling it with you. 

As I lie in bed next to you watching the nurses check you every 15 minutes I cannot keep all my fears away.  I know I do not show you, but mama is terrified. My insides are broken and I feel like I am suffocating, but every time time I think I cannot handle anymore you remind me just how strong you are.  You have this amazing fire in your soul that lights everything it touches.  You have a graceful yet fierce spirit that calms my soul.  When my insides are breaking apart your sweet smile reminds me just how blessed I am and that we can and will get you through this.

            When you were in mama’s belly I was so scared that I wouldn’t have enough love inside of me to love you like I loved David.  I know that sounds silly but I was terrified.  The minute the doctor laid you on me I felt this wave of love wash over me and I was so overcome with emotions.  Your sweet beautiful face melted my heart in a way I never expected.  From the very first breath you took you began teaching mama so many things and because of you I have changed so much. 

I know this road we are on together isn’t fair and will not always be easy, and I want you to know that it’s ok to be scared. It is ok to be tired of fighting all the time, but when you get scared and tired I promise you that I will be there to pick you up and hold you through it all.  No matter what my sweet girl you will never be in this alone.  Tonight I know I will not sleep much, but I will snuggle you a little tighter and pray a little harder.  I love you my beautiful princess warrior.

Forever and always,

Your Mama

A New Normal

I recently stumbled across a posting about the "A New Normal and 10 Things I've Learned About Trauma" I wanted to share the 10 things with all of you and expand on them little bit for how it relates to our life with Katie.

1.) Trauma permanently changes you.

• Trauma doesn't have to mean something so bad that happened all at once.  Katie's diagnosis took months to figure out.  The initial blow happened when we saw her mass, but it dragged on and on for 8 months.  By the time her diagnosis came we had already mentally imagined so many awful things. It changed us from the moment this journey began, and continues to change us every day.

2.) Presence is always better than distance.

• When we first started on this journey we didn't want to share it with anyone because we cringed at the thought of all the questions, intrusions, added worry, and attention.  As Katie's diagnosis came and the surgeries continued we felt so very alone. Her story started to spread through our families, friends, church family, and social groups like wildfire.  The out pouring of love and support from all over the US started flowing in like waves and we quickly learned that having the presence of so many was so much better than putting the distance between us and everyone.  The support and love has not wavered, not even once.  Her journey has been made more bearable because of presence.

3.) Healing is seasonal, not linear.

• Healing happens overtime.  It is not something that you can snap your fingers with and just make happen.  Physical healing happens as it should, but emotional healing takes a long time.  Taking a quote from this article directly, "Emotional healing looks less like a line and more like a wobbly figure 8.  It's perfectly common to get stuck in one stage for months, only to jump to another end entirely....only to find yourself back in the same old mud again next year.  Recovery lasts a long time" 

4.) Surviving takes firefighters and builders, very few people are both.

• This statement is so true.  It is true for the people going through the trauma, and for all the people surrounding them.  Very few people can be your crisis team and support, as well as your calming force when things get bad.  Thats ok though....every one in your life plays a role in your story and each encounter you have helps your journey.  It can be a very lonely journey.  Even sharing your story and suffering with others, no one will be able to fully understand what your going through and walk the road along side you.  Sometimes you are searching desperately for how to put out the fires yourself and still be able to pick up the pieces.  Your daily life feels like a battle to find normal again.  

5.) Grieving is social, and so is healing.

• When Katie started her IV chemotherapy I felt so overwhelmed.  We were surrounded by children of all ages hooked up to IV's.  I was angry and scared but my heart broke watching all these families.  They somehow found a new normal.  We were just starting down this road and I was grieving for the life Katie was beginning.  I didn't want to see anyone else suffer, I felt that it made it worse.  Then I started talking to the other families, Katie started talking and playing with the other children and suddenly each visit was a little easier, slightly more bearable. The same thing can be said for embracing our new normal.  the more we share our story, the more social we are with our family and friends the easier it is to heal and continue forward.

6.) Do Not offer platitudes or comparisons.

• Not that I would ever want to diminish anyone else's suffering, but nothing compares to your own.  Too many times we have heard "at least she isn't as sick as.." or "thank goodness it isn't worse" or "so sorry you are going through this, I went through the same thing"  Again not that anyone else's suffering is less than ours, and we understand so many others have it worse than we do, but that doesn't change how real this trauma is to us.  Sometimes we just need a friend who will sit with us and let us be scared and feel awful about our own story.  

7.) Allow those suffering to tell their own stories.

• Again I am taking this next bit directly from the source because I felt it to be so true: "Of course, someone who has suffered trauma may say, “This made me stronger,” or “I’m lucky it’s only (x) and not (z).” That is their prerogative. There is an enormous gulf between having someone else thrust his unsolicited or misapplied silver linings onto you, and discovering hope for one’s self. The story may ultimately sound very much like “God works in all things for good,” but there will be a galaxy of disfigurement and longing and disorientation in that confession. Give the person struggling through trauma the dignity of discovering and owning for himself where, and if, hope endures."  Being able to tell your own story is important.

8.) Love shows up in unexpected ways.

• This statement could not be more true.  From the moment we found Katie's mass I had my family and my best friends beside me.  Some of them might not have been able to be right at my side (military life tends to spread us all apart) but even my best friends who couldn't stand next to me were on the phone just listening.  Our families were there and we felt loved.  All the angry cries to God for allowing this to happen, or the why's that we asked, or the fears we expressed....all the while asking if God was even listening....he was, and his answer was showing us love in the most unexpected ways.  People from every aspect of our lives, past and present became very active in our lives.  So many people from our hometowns, church families, tamburitzan families, college friends, high school friends, teachers etc...so many people sent us letters, cards, messages, phone calls, texts, offered help, support, meals...it was God's love for Katie being shown to us through so many people.  We can never repay or say thank you enough for all of you.

9.) Whatever doesn't kill you....

• I have said for a long time whatever doesn't kill you makes you stronger....Ive lived by that for awhile.  I have always thought of myself as a strong, stubborn, independent woman.  HA.  It might not kill me but it sure does weaken me.  Do I feel stronger now? no, I feel like i ave found a way to just power through.  So many things happened all at once that it was hard to even breath. When we found Katie's mass, our son David starting having bloody stool, he ended up having to get a colonoscopy and having a juvenile polyp removed...he was 5. Katie received her diagnosis on my 32 birthday, 4 days later I went into labor and had our 3rd baby.  4 weeks after that Katie underwent major surgery.  I had my newborn in a crib in the hospital next to the hospital bed that Katie and I slept in.  While nurses would check her JP drain and empty fluid, I would nurse madelyn.  Once the JP drain was removed the army came and packed us up and moved our life to Texas.  Katie had her 2nd surgery, which came with complications with fluid and extra long time needed the JP drain. Madelyn had a seizure while Michael was in the field training and I had to take Katie with her JP drain and david to the ER.  I remember being in the ER saying this phrase over and over and thinking ok God..I was kidding.  Whatever doesn't kill me DOES NOT make me stronger....it breaks me. I felt like I have reached my limit. Everything that happens to you doesn't kill you, it might strengthen aspects of you but what it does for certain is exhausts you, makes you walk on egg shells a lot, feel anxious, and worry all the time.

10). Normal isn't normal

• Ive learned that no on has the same normal.  I held on for a long time being devastated that Katie wouldn't have the same childhood I had.  But who cares.  Her normal is what normal is in our life.  It doesn't have to be normal to anyone else. We have learned to own her normal, to embrace the life we have, and to power through all the crappy days.  

To read the full article about the 10 things and her versions of each you can find that here :  https://sojo.net/articles/new-normal-ten-things-ive-learned-about-trauma

Educating the masses

Katie was diagnosed with Castleman disease almost 3 years ago.  I had no idea then, that it would become such an important part of our lives. The connections we have made because of her diagnosis has expanded our family.  Her fight should us a love and basis of support from so many we didn't even know we had.  What once was a lonely, long, scary road of suffering for our family quickly became a road traveled by so many walking along side of us.  We have been blessed to add so many people to our friends and family.  Katie's bight light and infectious smile has warmed its way into so many hearts. We pray daily that her smile continues to touch so many and that her light never fades.  With amazing people in her corner like Dr. David we feel a little more at peace.

The importance we have placed on being actively involved with her fight has allowed us to gain a great deal of knowledge on Castleman Disease.  This sadly is still not the case with the rest of the world.  Castleman disease is still unknown to many.  When I say castleman disease it is usually followed by a confused look or questions about it.  It still is scary to know that the disease our baby girl is fighting daily has a very unknown future. Now that we are in a good place with her doctors, chemotherapy schedule, maintenance routine of her disease, and continued connections within the castleman disease community, I want to continue to help spread awareness of her disease.  I want to continue to educate anyone I can on what her disease looks like. I want to continue to do whatever I can to help in her fight.  Here are some important facts about Castleman Disease.  For more information on this disease and was you can help please go to www.cdcn.org

The impact the this organization had this past year was amazing:

Some important facts about castleman disease:

One of my favorite people on this earth, Dr. David Fajgenbaum.  He is leading the charge to cure this disease not only for himself, but for our sweet Katie and so many others.  He and his wife have become family to us, and along with them, an amazing team of volunteers working for the cdcn, and our mass group of supporters I know we can find a cure!!  Follow this link to see a video of Dr. David speaking:

https://youtu.be/xpoulbi52N4

Raising Awareness

Sometimes I feel like it would almost be easier in a way to have Katie diagnosed with a disease that is so well known.  Before anyone gets offended, what I mean by that is certain diseases are so well known that there are protocols, treatments plans, and success rates already in place.  If Katie were to have been diagnosed with something that isn't so rare, the fear of the unknown would be a little less.  I know there is fear of the unknown in every disease out there, as far as not knowing how sick you will get, but battling a disease this rare is like flying blind through a snow storm.

Several months ago there was the ALS Ice Bucket challenge to help raise awareness for that disease, which is also very rare.  I would love to find a unique way to get the word out to the masses about Castleman Disease.  So many people ask daily what is it, how did she get it, how do you fix it, and many other questions.  One of the biggest issues (aside from there not being a cure yet) is that no one knows enough about this disease, including the doctors.

Katie is so very blessed to have an amazing team of Doctors and researchers we have met through this disease who are determined to cure this.  They are actively fighting this disease through research, clinical trials, and raising awareness.  Without their hard-work, personal battles with this disease, and determination to fix this, Katie's future would be even more unknown.  I have learned so much about this disease and have become actively involved in this disease through them and could not be more thankful.

Help spread the word and educate yourself on this disease.  Yes there are so many unknowns, but if each one of you learns a little more about this disease today, that is one more person who is no longer in the dark.  So many people are battling this disease from Katie's age all the way to the elderly and each battle is different and just as scary.  Help make a change by not only educating yourself on this disease but by raising funds for the crucial research studies needed to be done.

Visit www.cdcn.org to learn more about this disease and learn how you can help.

In my daughters eyes

This past week was so great because we were able to spend time with our family and reset before this new treatment plan started.  This weekend we celebrated Mother's Day as a family and it was very humbling to see the unconditional love my kids have for me regardless of my flaws.

Katie and I drove into Houston last night and spent the evening eating pizza, jumping on the hotel beds, and staying up to watch TV.  Even though it was so fun, I had a hard time wrapping my brain around what tomorrow morning would bring.  Now, as we sit here in the hospital room with IV in, waiting for the medicine to start, all I can think about is Katie's amazing strength and perseverance.

There is a song by Martina McBride titled 'In my daughter's eyes'.  The lyrics are beautiful and when I hear it I feel like Katie really is the powerful driving force behind my faith, love, and strength.

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

I am not a hero, nor am I fearless, but with Katie's strength throughout this battle, I feel like through her eyes I am stronger and have learned that fear can be a weakness.  We continue to push forward despite the fears, and overcome each hurdle together.  

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe 
In my daughter's eyes

Katie absolutely gives us strength when we are faltering, and she is the reason I continue to believe in God's plan.  How can I question a plan when Katie so easily follows it without question.  Her battle has taught me so much and I will continue to fight with her, for her, and by her side!  

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daugter's eyes

This song is beautiful and so very true.  Not only do I feel this about my sweet Katie, but David and Madelyn both continue to remind me what life is all about and without those two kiddos and my amazing husband this journey would be so much harder.  David, Madelyn, and Michael light up Katie's life and despite the journey, we are so blessed!!

It is not always clear

     People spend a great deal of time asking why, why me, where are you, why aren't you answering me. One of the things that I have learned over the past 2 years of Katie's fight is that God's answers are not always right in front of you.  If you are really leaving it ALL to God you will recognize his answers as they come in many forms.

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

     This verse from a song is very true to the trials we all face and the answers we all seek.   The begging we do, prayers we send, and answers we seek are answered daily.  I have learned that this week.  We had a very important and very difficult decision to make for Katie's care.  We were faced with two crappy choices for Katie.  Either we chose surgery, which if it worked could give her the best chance at a normal life, but came with some pretty great risks.  The second choice was chemotherapy which is something no parent wants to put a child through.  We cried, prayed, talked, went back and forth for over two weeks and finally came to the decision to move forward with the Surgery.  Regardless of that choice we were both so worried it was the wrong one and that if something went wrong we would feel the weight of that choice forever.  The morning after we decided to move forward, we received a phone call from the pediatric surgeon.  He pulled a few specialists in and spent several hours reviewing her case and decided that the benefits of her surgery did not outweigh the risks.  This surgery would leave her with some life long complications that weren't worth the risk.  

     Did God some directly to us and say THIS IS THE CHOICE....no not at all.  But what he did do was provided us with a team of doctors who sought out the knowledge and help they needed to make a safe decision for us.  God eliminated one of the options for us.  He took the burden of making the wrong choice away from us.  Are we happy with having to do Chemo?  No, but we are happy that Katie has an amazing group of doctors both caring for her and supporting her, who have finally come up with a plan and we are ready to take this on.  

     Katie starts Chemotherapy Monday, there are several steps in her treatment plan, this first one will last 6-8 weeks.  Depending on how effective that trial is, she will then add on a second chemo drug that she will do for an additional 6-8 weeks.  She will then be scanned to see if it had any effect on her disease.  If the answer is no, or not enough, we move forward with a Intravenous medicine called Rituximab.  Though this journey will not be short, it is a plan, and one that will hopefully bring Katie to a point in her Battle where she can experience what it feels like to be a normal healthy child.

Tough Decisions

Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” 

     There are a few bible verses that have really resonated with me the past few weeks.  The struggles have been hard and the decisions that lie ahead of us for Katie are difficult to make.  We have gone round and round with trying to decide what is the best option and as her parents how we make that decision without guilt later if something were to go wrong.  I have had a hard time sleeping soundly the past few nights and as I was laying in bed I came across this versus from Proverbs and it really hit me:

Proverbs 3:5-6 “Trust in the LORD with all your heart; and lean not upon your own understanding. In all your ways acknowledge him, and he shall direct your path.” 

     The what if's have always been my struggle when it comes to Katie and in life in general.  I fear that we will choose one course of treatment/action for Katie and find out later that it was the wrong one.  What if we choose surgery and the high risks involved take away her mobility in her right arm? She is 3....how do we as parents explain to her that it was our choice that changed her life forever?  What if we choose Chemo and it turns out that the Chemo didn't do anything for her disease and we wasted time and lost the ability to do the surgery?  Being diagnosed with such a rare disease comes with so many unknowns and what if's and all we can do is educate ourselves and to do the best that we can with the information that we are given.

     Though we are trying to make the best decision for her care, no matter how much we weigh the options and how many times we list the pros and cons, God has been directing our path with her and I know that whatever decision we do make it was made through his guidance.  I have also learned that even though there are times I feel alone in this, I am feeling that because I have allowed my fears and stress to mute God's hand in this situation.  We have gone round and round trying to fix Katie, trying to figure out how and why this happened.  The truth is, the how's, why's, and what if's do not matter.  The only thing that matters is that it is a part of our journey right now and as Katie's parents we will continue to do our best to advocate for her, love her, and pursue the best options for as long and healthy of a life that we can. 

    I LOVE THIS BEAUTIFUL, VIBRANT, AMAZING, COURAGEOUS, little girl with all my heart and soul!!!

My internal struggle

     This past weekend I had the amazing opportunity to attend the first ever Castleman's disease patient and loved on summit.  This event allowed patients and their families who were diagnosed with Castlemans disease to connect with the leading doctors and researchers in this disease and also with other people sharing the same battle.  It was such an amazing experience being able to meet some wonderful families and feel as if we are not alone in this.  I headed there with this sense of triumph and power thinking that I would get great answers and come home able to fix our sweet girl.  Though I did make some amazing connections and learned a great deal, I came home feeling defeated.  Though we met a great deal of people who are battling this disease, some really in the fight of their life right now, we still have not come across a single case as young as Katies.  There is literally no literature or research out there that we can compare Katie's case to.  No one knows what Katie's future will hold.  There are a lot of statistics out there for young adults, adults, and a few adolescent cases, but all the questions we have are continually met with a "we do not have those answers yet".  Katie's case is unique because though she has the milder form, the location of her disease is not able to be removed surgically so that pushes her into the treatment category.  With so many unknown out there a lot of her doctors want to just wait and see what happens, but new research is showing that that is not always the best idea, and that even in these milder cases, it is a life long disease and one that can come back at any time.
     This is where my struggle comes in.....As a mom I want to shelter my children from any pain, illness, heartache or struggle they will ever have.  I thought it was my job, my duty to protect my kids at all costs.  I can not protect Katie from the battle she has ahead of her.  I can not just take away the stomach cramps, joint pain, sleepless nights, anxiety, bloodwork, scans, or procedures.  I can hold her hand and tell her I love her, but this fight is hers.  I want to fight this for her and take her pain and the life long struggle she will have, but I can not.  I struggle daily with heartache knowing that she literally will fight this her whole life.  I force the why is this happening questions out of my head because I know they will not get me anywhere, but I have found myself searching for that answer anyway.  I know one day we will have to sit down and talk to Katie about all that she has going on, but I dread that day because how do you tell your child that she is sick..that though she is ok today, she has a very high chance of getting lymphoma later in her life, that though she feels good today she could be fighting for her life tomorrow?  I wish I could trade places with her.  All I want for christmas is to be able to give her the gift of freedom to have a normal childhood and a normal life.  Gods plan is hard to understand sometimes, but I do know that he has a plan and I find comfort in trusting his plan every time I see her smile......

Searching for Answers

     In our search for answers and a new plan for Katie, we have been able to connect with an amazing group of Doctors, Patients, Family Members, and Researchers.  This group of people make up a network called the Castlemans Disease Collaborative Network.  For the first time ever this network is hosting a Patient Summit in San Francisco this weekend to ket patients connect with the lead doctors and researchers in this disease.  The purpose of this is to allow us to go and listen to what new advances are being made, have a question and answer session with the doctors leading the fight, and get to know and connect with other people going through the same thing.  Katie and I are blessed to be able to have this chance to go.  As I am loading up the car with our suitcase, her medical file, and all I need for the girls on the plane, I find myself once again humbled by the love and support we continue to feel by everyone far and wide in our lives.  And once again Katie's spirit reminds me to not stress...as I am running around like a crazy woman trying to get it all together so we can head to the airport she is twirling and singing Let it Go in her Elsa dress and bouncing around with mad talking about flying on a plane.  LOL  Also, Without the support we would never be able to find the strength, courage, and voice to search the globe for Katie.  I am blessed to have one of my best friends so close....not only is she pushing me and supporting me to do this, she is also taking David for the weekend so that we can go and focus on Katie.  Thank you also to my Mom for once again coming where I need her so that she can help me with the girls.  She truly has always been by my side at the drop of a hat.  Thank you also to our families, even though you will not be able to come with us, I feel like this opportunity will be a win for everyone as we can connect and learn more about how to help Katie in her fight!  Unfortunately my amazing husband has to sit this one out because he will be working non stop until Christmas, but between his dedication to us and work, and our combined fight for Katie I am truly feeling like we are on the right path.

Katie was also featured in the CDCN's online medical journal this month which was an amazing blessing to be able to share her story with the world:

http://us7.campaign-archive2.com/?u=f441d5c29735cf65f23c18319&id=db63c53aef

I am praying for wisdom and answers to come from this weekend's adventures, but also to just be able to connect with other people who know how Katie is feeling.  Thank you everyone for the love and support and continue to pray for us!

What is normal when you have never felt normal?

How is she feeling?  She looks like she is doing great? Do you think she is feeling ok?

These are questions that we encounter pretty often and also ones that we wish we knew the answers too.  The doctors keep asking us to keep an eye out for anything abnormal or anything that is not usual for her like her appetite, sleep, level of activity etc.  I wish that we knew that on a day to day basis she feels perfect and there is nothing hindering her health and spirits.  The truth is, Katie has been dealing with her disease for so long that we are not sure if she even knows what it feels like to feel normal.  It breaks my heart that at 2 years old she is sad and cries a lot but does not know what is wrong or at least how to describe to us what she is feeling.  The doctors ask if there are drastic changes in her behavior or day to day health, the answer to that is no.  However being a mom of 3, I can tell you that it is not normal to be sad a lot, not sleep through the night EVER, not eat much, get tired more quickly, or spend hours in a day laying on the couch or wanting to do nothing but cuddle.  Do I think that when you look at our sweet girl you can see she is sick, no.  But I do know as a mom I know she is sick.  I know that her day to day behavior is not normal, I know that even though we battle through some of the normal terrible 2 stages, that a great deal of her moods and tiredness stems from never knowing what it is like to feel normal.  I know that when other people are around her they say she is doing great and seems like any other 2 year old, but I can tell you that the brief few hours people see her smile pales in comparison to the amount of time she spends sad or moody or tired.

We all have our good days and our bad days.  That it is a normal part of life, and one that I have always handled pretty well and tried my best to just roll with.  One thing I struggle with daily is how to teach Katie that those good days and bad days that she has so often will become her normal and until something new happens with research advances on her disease this is something she has to deal with forever.......

I want to be able to take away the yucky feelings, the tiredness, and the sadness she encounters.....

I continue to reach out and help in any way I can to find out how to keep this beautiful smile on her face always (aside from the usual ups and downs of life of course lol).....

I know that God's plan for me and my family is to become warriors with and for Katie along side of him and to learn from her strength.  I know that over the past 2 years of her fight with this disease God has been along side of her and our family...I know he has a plan.  My struggle is trusting in that plan, trusting in the pain and sadness she feels to know that the outcome will be part of Gods plan for her.  

Sharing her Story

Shakespeare once wrote "Though she be but little, she is fierce" and these words have never held more truth for our Katie.  

She is such a beautiful, vibrant, amazing, 3 year old girl and even through her battle so far with Castleman's, she has remained fierce.  One of the goals I have had since she was diagnosed was getting answers and sharing her story.  Being diagnosed with a rare disease that does not have many answers on what her life will be like in 5, 10, 15+ years  is very difficult.  With that being said we have done a great deal of research, reaching out to other Castleman's patients, and sharing Katie's story with anyone who would listen.  In the past few weeks, this has really benefited our family.  We have been invited to attend a Castleman's Disease summit in California in December to learn more about this disease as well as share Katie's story.  We have been asked to be apart of the planning committee for reaching out to other affected patients and families, as well as becoming a Castleman's warrior.  We also just recently received an email from the lead doctor in the Castleman's Disease Collaborative Network asking if we would be willing to be their feature story for Novembers medical Journal newsletter.  It has been very hard to see the blessings that were coming from the trials over the past 2 years with Katie, but I believe that God is giving us this trial so that we can share it with the world and maybe help someone else who has a child that gets diagnosed very early and has no where to turn.