Sitting down and rummaging through old pictures of Wesson brings back lots of memories.

What is life like without him? Life after cancer...and the devastation that comes with it?

It is truly unexplainable.

Today is Feb 26th, which  means to the day it is the five month anniversary that my sweet angel ran into the arms of Jesus, earned his angel wings loud and proud -- and was finally freed  from the pain, suffering....and garbs of tubing that had kept him alive for so long.

No wonder we still feel like this.

Five months. 

He would be an 18 month old right now, had cancer not existed.

Had cancer over the last ten years been better funded, better researched...and made a bigger priority -- at this very moment I might be holding Wesson. Trying to settle him down for bed, but laughing at him as he played and wrestled with his big brother Keegan.

Instead I am blogging.

Trying to explain the unexplainable -- what it is like to live life after cancer.

This very moment one year ago we were sitting inpatient in Memphis, TN recieving a research based protocol of a chemotherapy regimen so intense by nature that it nearly killed off Wesson's bone marrow completely. Had he recieved anything stronger, he'd have had to be transplanted after because his bone marrow would have been done in.

And that was our options.

The bone marrow aspiration after this round of chemotherapy revealed a bone marrow nearly completely full of leukemia and ready to spill out and take over his blood again.

The chemotherapy treatment nearly killed Wesson, but left his cancer untouched.

This. Is. Not. Good....Enough.

I am not a fan of politics, and really don't wish to post anything political on my blog -- especially involving pediatric cancer and my son. With that being said, what I am about to say is not to offend anyone or degrade the efforts and ideas of those who wish to change the outlook on pediatric awareness -- I give credit to all of you who do what you do, and appreciate every effort being put forth.

However -- there has been a petition circulating facebook asking for signers and supporters to help "Light the White House Gold for Pediatric Cancer Awareness". I think this is good.

But not great.

We are focusing our energy in all the wrong areas here -- and that is why we are spinning our wheels. Not going anywhere with pediatric cancer funding, research, treatments...better options -- and ultimately a cure.

Republican or Democrat -- Mr. and Mrs. Obama aren't going to cure cancer.

Ever.

Nor do they have the money to fund it.

Forgive me if I didn't research my facts before I decided to write my blog, but we are close to 16 trillion dollars in debt as a country and I doubt if curing pediatric cancer is on the top of Obama's to do list.

My husband and I sat in the belly of the beast, facing the biggest fear you can face as a parent and watched our son surrounded by 20 people none of which were family, lying in the hospital bed as his heart rate dropped to zero.

We shook hands with some of the most well respected, top notch physician's in the country and watched as an intesivist shoved a tube into Wesson's lung as a last resort to save his life.

I watched my own son's Hgb drop from 10 to 5 in the matter of hours as his skin turned pale, and heard the word's "He probably won't make it through the night." 

Over 3.5 million dollars were put into saving my son's life in the span of 10 months, even though they KNEW the chances were slim.

And the people who walked this path with us, who treated my son from day 1...

The nurses on the pediatric cancer units and transplant floors -- wearing crosses around their necks and praying down on their knees as my son's fever spiked over 105 degreees, trying to tell us "it's okay, this is supposed to happen"....

The transplant team who worked endlessly and fell asleep on their computers waiting for his labs to come in every six hours....

The ICU intsivists, infectious diseases, nephrologists, suregeons, ENT specialists, oncologists and researchers in the lab who worked around the clock....

They are going to cure cancer.

I met them. They fought with us side by side and day and night, and are doing it for another family right now.

They are actively approaching treatments the right way, down on their hands and knees fighting with us like these children were their own.

They've seen it. We've seen it. And it's ugly.

We need to give more.

More money, more efforts, more awareness.

And with time...they will get there.

At this very  moment Wesson's cancer cells are in a lab somewhere being studied in a research lab for the Pediatric Cancer Genome Project. 

And I know that because of this someday, somebody somewhere is going to say -- "I got it". Wesson will be watching over from his home in heaven and he will be so proud. He changed the way cancer is treated forever.

I believe that pediatric cancer can be cured, even the most catastrophic. But it isn't going to happen while we just sit here.

We are the one's who can make a change.

Let's not rely on the government or the Obamas for something that we can do ourselves. We can raise awareness.

We can raise funds.

It doesn't have to be pretty or lit up in gold. It doesn't mean football players wear gold sweatbands instead of pink during the football season.

No.

It doesn't have to be showy.

It is not the celebrities, the president and the pro athletes who are curing cancer.

It is the 40 year old physician with tired eyes, back pain and a family at home who misses him....the nurse who just worked four hours past her shift because her 2 year terminal cancer patient might not be there when she gets back in the morning, the oncologist who spent her entire weekend trying to tweak together a unique group of chemotherapy medications that would target one patient's specific cancer cells....instead of telling them to go home.

That's who is curing cancer.

And Wesson's battle with cancer will never be forgotten, and he will not die in vain. 

He was put here to create change, and change will be made.

As his mother, that is a promise.

The Wesson Littau Foundation, INC. has our first events of the year marked on the calendar -- to help make this change, and to make our dreams of a cure for all pediatric cancer including Infantile Acute Lymphoblastic Leukemia become a reality.

You can find our upcoming foundation events on Facebook if you "like" our Wesson Littau Foundation page.

A website is currently in production, and we will announce that when it is up and running.

Logan and I would like to encourage a call to action from our readers, supporters and anyone who is on board Team Wesson and would like to see a change.

The 6th Annual Cure Kids Cancer Radiothon is scheduled for April 4-5, broadcasting live 5 am - 6 pm from the Sanford Chidlren's Castle of Care. 

Please tune in to your favorite Results Radio Station -- mix 97.3, Hot 104.7, B102.7, KIKN 100.5, Easy & Fun 100.1, KXRB-AM or KSOO.AM.

Logan and I will be sharing our story again this year, as well as other parents, families and children who have been affected by cancer.

This is such an amazing event, and inspiring on so many levels. It is a two day event of passion and emotions for everyone involved, whether you have been personally touched by cancer or you just happened to be flipping through the radio stations.

We hope that you can tune in, and if you are able to give even just a little -- to donate to Cure Kids Cancer for what they do for children and families who have been affected by cancer.



"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. "~Albert Pike

Little Miracles

I've been a little vacant from our blog, as organizing my thoughts lately has been similar to attempting to clean the house with your children at home.

Lot's has gone on in the cancer world, as it is something that we will forever be a part of now. Being part of this special cancer community is most certainly a blessing...but it is also a curse. A blessing in that we have met so many wonderful, strong parents and children and we get to be a part of their battles along with our own. A curse in that the pain does not go away from losing your own child, like a dagger that will remain in your heart forever and with each day that passes the pain numbs a bit.

And then when another child is diagnosed, or someone in your cancer community recieves bad news -- that dagger gets a little deeper again.

Only moments after Wesson had left us, his transplant physician at St. Jude who we had become close with and loved very much said to us "you and Logan will now forever carry around with you a special kind of pain, but it will not always be a bad pain....just a very special kind".

So Logan and I have chosen to hang on to this pain, and allow it to become part of us -- because like our wonderful physician said it will not always be bad. And honestly some days it is not. Some days it is even a beautiful pain that I am and always will be very thankful for. 

A kind of pain that allows you to go to sleep each night thankful for what we do have, and waking up each morning just happy to be alive. A kind of pain that allowed us to cherish the Christmas season and the time spent with family, because last years was spent fearing my child's life in the hospital...and next year's is uknown.

We will allow this special pain to be used for compassion and caring for others so that we can do our part to "pay it forward". God does not make mistakes, and he knew Wesson's life on Earth was temporary -- and he did it for the good of other people for that I am certain of.

I spent Wesson's entire journey begging God for a miracle, and what I never realized was that He had already given us one. Each day with him was a little miracle.

When Wesson was going through treatment, I would lay down at night -- or rather lay up as most of the time was spent in a less than comfortable rocking chair or sleeping with my sweet boy in my arms so that I knew when the nurses were touching him...

....and pray for him until I fell asleep with the words still on my lips. I would wake up to Logan softly singing to him, a pump beeping, or a nurse checking vitals in the middle of the night and realize I did not get to finish. And so I would begin to pray again.

I do find myself falling asleep in prayer once again for the children and their families that are still fighting, or have also lost a loved one. The list gets longer everyday...and I do mean every single day. Nobody should have to go through this.

The anguish that cancer can cause is truly unexplainable.

Everytime I turn around I find out that cancer has found another child to parasite on. Or a close family's child has relapsed, is on the ventilator, has caught an infection.... or is going home for hospice.

Cancer can be beautiful. But it can also be very ugly.

And this is not okay.

So we will fight.

The Wesson Littau Foundation is continuing to make progress, albeit slower than I would like. All good things do come to those who wait; however and I know that God is taking his time blessing it, and working things out in His own time.

We have recieved a few donations, which I am so thrilled about, and grateful for as well. Family, friends, and community who have already given so much to us -- and want to give more and help our foundation prosper so that we can fuel the funds at St. Jude Children's and other research hospitals that want to change the future of children fighting cancer.

You all are so amazing.

We do have our official logos for the foundation, which I am excited to share -- although I will wait until the website production is finished. We are so very thankful for the time and effort that was spent and grateful for the talented works that were all sent to us. We really did love them all.

There were a couple that caught our eyes specifically, and we knew they were the perfect image of Wesson and his beautiful innocence and couragous battle. Thank you to Shelly Heath and Rebecca Jaton for your time and efforts -- and  for working with us to create the perfect images for our sweet boy and the foundation.

And as for Wesson....you sweet sweet thing you.

He continues to show up in places, things and songs. Like a reminder that he is everywhere now. I cannot wait to share some of these beautiful moments, but I will save them for the book that I hope to write. They are too precious and wonderful to be placed on a website.

Until then, we continue to move forward with the foundation, pray for sweet dreams of Wesson and that he continues to bless us with his presence when our eyes are open to it.

We also pray for sweet Matthew, Phoebe, Hunter, Cole and many others. You are all in our prayers and stamped in our hearts all of the time.

Logan and I will be selling Wings for Wesson pins and "In Memory of Wesson" wristbands. Profits to go to St. Jude through our St. Jude Heroes endurance event that will take place next April in Nashville, TN.

The wristbands are very fun with different colors and sizes. Please feel free to message me on facebook if you are interested.

My contact e-mail:

kristi.littau@hotmail.com or
wessonlittaufoundation@hotmail.com

 

Wesson's Cancerversary

Today is November 14th, 2012 -- which means it is Wesson's official cancerversary for being diagnosed with infantile leukemia. I remember the entire day and night like it was just yesterday...and sometimes I wish we could do it all over again just to see Wesson one more time.

I couldn't sleep last night and no wonder. Spending about the first hour replaying the events of that dreaded day only one year ago. It played out like a bad movie, or even a nightmare. Some of our readers were there for parts of it, some had heard what had happened....and others may not know at all.

My own coworkers were the ones to attempt to get a blood sample that evening, after hours and the clinic was closing down. I remember my heart falling into my knees when I saw the color of Wesson's blood. It dripped down his finger like pink water. That's when the physician I worked under at the time (Dr. Keith) had motioned quickly for us to get to the hospital. It seemed that everyone around us was pale as ghosts...and quite horrified.

When we got to Winner Regional the nurses were wonderful, and everybody was so kind but frightened to near death. This is the one part of the night that seems very blurry to me. Listening to the words "we think it's leukemia" -- made me want to escape my own body and bury myself in the Earth. I did not even know infants could get leukemia, let alone my very own son.

Makes you ask those familiar questions ---"WHY, WHY, WHY"

I learned about leukemia (the cancer of the blood) in nursing school, and for some reason the word itself always gave me the heebejeebees.  What I knew of leukemia at that time was that it was something that happened to people in the movies....and they always seemed to pass from it.

But it would never happen to my family or my patients -- that I felt sure of.

We flew to Sanford Children's -- just me and sweet Wesson as Logan and Keegan rode along with my parents in the suburban, much further behind us. Only one thing kept running through my head on the plane that night -- "Keegan is not going to have a baby brother, Keegan is not going to have a baby brother"...and if you wonder why this was all I could think of then you probably do not realize how life threatening Wesson's condition was at that point. 

It was terrifying.

Tests were done at Sanford Children's and the diagnosis of leukemia was confirmed, although we weren't sure what type at that point. It was the highest white count they had ever seen at the castle, and the first infant they had ever diagnosed with leukemia.

What a punch to the gut.

They were all so professional. The physicians, the nurses and all of the other staff. They were concerned --- you could see it on all their faces. My sisters came quickly as they live close by, and did their best to comfort me but themselves were quite distraught to see our sweet little Wesson -- tiny and only ten weeks old in such dire distress.

Never do we see ourselves in this type of situation, and yet here we were.

What a nightmare.

The anesthesiologist came in, and although I don't remember his name -- I will never forget his face. (Although his name is written down in my binder somewhere.)

He was honest and yet very sincere. Wesson would need a large bore intrajugular catheter into his neck for leukeapheresis -- which is where they clean his white cells out and in return give him more blood.

"Wesson may not live through this procedure" he said. "His hgb is so low that his oxygen carrying capacity may make it difficult for him to breathe again, and he will be on a ventilator IF he comes out". To my knowledge his hgb was 2 with a rapidly rising white count that was officially read round 520,000. Normal is 6,000 to 11,0000. 

What I wonder to this day -- is what his platelet count was. I do not believe they told us, but it had to be nearly 0 -- as he had blood in his diapers for a week before diagnosis. There are days when I feel the need to call Sanford and request all of the lab results from that initial screen, but then I stop myself and wonder why.

You are probably wondering what was I thinking?? Not taking him to be checked out with blood in his stool, and believe me I ask myself this daily. But as terrified as I was, there was always a logical explanation for Wesson's abnormal symptoms. And besides, I thought as a nurse I could handle this. His appointment was set for two days after he was diagnosed, and thank God we didn't wait...or our time with our sweet boy would have been cut even shorter.

He would not have survived until that Wednesday.

Back to the procedure. --->

As the nice anesthesiologist was explaining that we had to get Wesson to the procedure quickly, and they would take him soon -- I panicked. Logan had not yet arrived to the hospital. He may not have time to see Wesson before he goes in to surgery. At this point the emotional flood gates poured open -- it was almost unbearable. The combination of fear, sadness, anxiety and emotions I'm really not sure there are names for -- were about to cause a mental explosion within my own body and mind.

That's when the girls told me that Logan was close.

Dawn and Kara had been back and forth on the phone with my parents telling them that they had to get to the castle and not just soon....but now. I told the physicians we had to wait for my husband. And soon enough there he came, running down the hallway of the ICU and into the room in enough time for the staff to quickly huddle together and start to wheel Wesson down the hallway to surgery.

Logan and I kissed him on his sweet little head and secretly said a little prayer. His eyes were wide open and he just stared back at us with this determined sparkle in those baby blues -- as if to say "you guys I am going to be fine."

The rest is history.

The physician's and nurses at Sanford Children's saved my baby boy's life. God had guided their hands to get him through that night and the intense week that followed.

I thank God everyday for that night, because even though Wesson's story ended short....if it had ended that night one year ago today -- what would we have been left with?

Blurry memories of our sweet newborn child, sleepless nights and cold clammy skin. We would have never forgiven ourselves for waiting so long to take him in, and I'm not sure we would have been able to live with that.

So instead, God gave us the opportunity to fight. To move to Memphis and meet wonderful families faced with the same catastophic crises. To meet ourbubbly and amazing baby boy who had a will to fight so strong he beat the cancer that was deemed unbeatable. To walk around the hospital of St. Jude and see to your right -- a family smiling and enjoying every single drop of time together...and on your left a family down on their knees weeping for reasons unknown -- but left us wondering. Relapse? Hospice? Infection?

 God let people into our lives that we would have never otherwise met -- physician's who do anything to save one life of a sick child even if it meant not sleeping or spending time with their own families, nurses who work tirelessly and somehow find the perfect combination of emotional attachment and skilled nursing.

God guided us into 'survival mode' (is what I call it) and we were able to spend almost an entire year focusing on the only thing in life that matters -- which is life itself. He gave us a backbone of support through our friends, family, and community. Loving parents who watched over our oldest son Keegan, so that we could both pour each second of every day into Wesson...and saving him.  God allowed us to sacrifice everything we ever had in order to focus on the life of our precious and yet very sick sweet boy -- and believe me there is no better feeling than that EVER.

If I could bottle up that feeling, and sell it to the world -- I would.

A fulfillment and a reason to live, that leaves you empty when it is all over.

What a journey. What a long bumpy road. What a beautiful inspiring story and at the same time a terrifying nightmare.

If I did not have close to 4,000 pictures of that sweet chunky bundle of Wesson -- I would wonder to myself if this all really happened.

But I miss him.

I miss him today, I missed him yesterday...and I will miss him tomorrow.

I will always wonder what could have been, and why's and why nots.

A year ago today was the worst day of my life....and also the best. Because a year ago today Wesson got cancer. But he also began his whole life's purpose --- to teach.

He taught us to trust in God, to take care of a child with complete love and detailed intricacy. To love without fear, to remember what matters most, and that life can be much simpler if we just forget the small stuff.

We now hug Keegan a little tighter.

And we now have a mission. To help others like Wesson.

Because in ten years when another Wesson comes along, I want those researchers and physicians to know exactly how to cure him.

So that he or she and his family do not have to suffer as we did, and as others are today.

And I will close with the announcement that we are officially incorporated.

The Wesson Littau Foundation, INC. is a go! We will not be taking donations quite yet as it will take a few more months to become tax-exempt and we are in the process of setting up a bank account, and a website to go along with it.

Once this is all set up -- you will be the first to know.

Thank you all so much for your continued love and support, and if you think of it today we ask that you donate to our St. Jude Heroes Team Page in honor and memory of Wesson and his canciversary...and for the thousands of other children like him that are suffering from cancer and the toxicty of the treatment.

Here is the link, it is very easy safe and secure to donate. And the money goes directly to St. Jude Children's Hospital.

http://heroes.stjude.org/teamwessonwilliam


Together we can help make a difference!

 

Wesson and his daddy, about a week after diagnosis in the ICU at the Sanford Children's Hospital in Sioux Falls, SD. Wesson had just been taken off the ventilator, for which he had been on for a week. This is one of my favorite pictures because it displays the love of a daddy for his son...and also the love of a son for his daddy.

St. Jude Country Music Marathon

Logan and I have decided to go ahead and get a jumpstart on our fundraising for St. Jude Children's Research Hospital in honor of Wesson. As the process of becoming incorporated takes time, and while we work on officially becoming a foundation --- we have chosen to participate in one of the endurance events that St. Jude puts on in efforts to raise money.

We have committed ourselves to fundraising for the St. Jude Country Music Marathon this Spring on April 27th, 2013 in Nashville, TN. Our goal is to raise atleast $3,500 in memory of our sweet boy and his short battle with infant leukemia, and in honor of others like Wesson who are fighting today... and those that will be diagnosed in the future.

We ask that if you can donate even a dollar that you please do! We have been so overwhelmed over the past year with love, prayers, support and guidance from family members, friends, community and even strangers. Our family has had more support in the past year than a family could ask in a lifetime, and we are now striving for continued support and continued awareness... and even more funds. Not for ourselves, but for Wesson and the children that continue to be diagnosed with catastrophic illnesses each and everyday. And for the physicians and researchers that do not sleep at night because they want to make a difference...

And save lives.

There truly is no better place for your extra cash, or precious pennies to go than to St. Jude Children's Research Hospital. There is never any inkling of doubt that the physicians, nurses, medical staff and other personnel pour their heart and souls into saving lives -- and the hospital cannot run without our efforts in raising funds and striving to make a difference. They do so much for the families fighting and waiting for a cure, and truly make it feel like a magical kingdom.

We are registered to run in the event this Spring, and hope that this is our way of making a difference and helping to change the future of not only infant leukemia, but other terminal cancers.

We hope that you can help us in our efforts to support this amazing place. If you would like to join Team Wesson or simply donate in his honor you can visit our page:

http://heroes.stjude.org/teamwessonwilliam

Wesson you continue to teach, to inspire, to prosper...and to live on in each one of us. We love you so much sweet boy....

A Desire for Change...and Dreams of our Sweet Sweet Angel

There isn't a whole lot to update on the Wesson Littau Foundation yet. We are currently waiting to hear back to get the "yes" we are incorporated -- which could take some time.

 

But I cannot wait to hear those words. 

 

Logan and I are like anxious runners at the beginning of the race --just waiting for that gun to go off. We are finding it difficult to be patient, when we've got hopes, dreams and plans building up in our heads...and our hearts.

 

Plans to make things better , plans for moving forward....and most importantly plans for change. Changing the outlook on leukemia, changing the way we look at pediatric cancer...and hopefully raising the funds needed for the amazing physician's working their tails off to make a difference in the lives of these children.

 

I'm tired of hearing about that 94% cure rate for childhood leukemia. What about the other 6%...and what about those that do not even qualify into that category? Like Wesson. And I am sick of watching children suffer and die because everybody wants to look away from the inevetable.

 Pediatric cancer research is terribly underfunded, and I am not exactly sure why. 

 

Maybe it is because childhood cancer is so ugly. Everybody wants to turn their heads, and pretend it is not happening. Lets focus on something else -- something easier. Maybe it's that nobody wants to fund childhood cancer because it is complicated, difficult to cure, and hard to digest -- that children really are out there suffering from not only cancer itself but the toxic treatment that comes with it.

 

Did you know that only one drug has been developed and FDA approved for pediatric cancer...in the last 20 years?

And you should see some of the prices of these chemotherapies. It is out of this world.

It's not okay that I cannot sleep at night because I retrace every memory I had with my son, every conversation I had with a physician that ended in tears and the words "yes, this is very bad", "we may not cure him"....and every time I looked at him I was forced to imagine the way that he would leave this world and his family behind.

It is not okay that we had two options -- go home and recieve hospice care or treat him until his sweet little organs cannot handle it anymore.

That makes me sick.

It is not okay that I want him back more and more each day, because I just want to say that I'm sorry...and hold him for one last time.

And it's certainly not okay that for six weeks Logan and I both sat in the ICU rocking chair praying that we could simply hold our child. For six weeks all a mommy and daddy wanted in this whole world was for our son to be free from enough tubes so that we could wrap our loving arms around him. 

But we never got to hold our sweet baby boy and watch him take his last breathe of air, or tell him it was going to be okay....that he would go to heaven where he would live forever and recieve everlasting love from Jesus.

And that makes it difficult for me to sleep.

And it fuels my desire for change.

So now what we are left with is not only an emptiness in our hearts because our sweet darling boy is gone....but also an emptiness that lingers as an aftereffect of the high we were on while fighting. When we were in the midst of the battle of Wesson's beast -- we had an indescribable purpose -- a fulfillment. We were able to enjoy and savor every last minute with our son because we knew that his chances of survival were minimal. I have 3,500 pictures from Wesson's 10 month journey waiting to be put in photo albums -- and each and every photo captured I can tell you exactly what was going on, how I felt at the moment....and why everyone in the picture was smiling.

I want to live with that appreciation and love for life each and every day.

We all should.

Life with Wesson was amazing. That battle was difficult - I can barely explain with words. Emotionally, physically and pyschologically defeating in every way possible. And yet life with Wesson was still better....

It was the best.

I will never forget the day I said "I can't do this anymore". It came out of my lips one time, and one time only -- and it was between Wesson's two transplants. There was about a two to three week period of which we kept him on an outpatient basis with the promise to the physician's that we could handle his 24 hour around the clock care. Out of pure desperation to have precious family time together.

This included up to 15 hours a day in the clinic recieving necessary medicines for sweet Wesson, labwork, physician visits, and about three to four bags worth of clothes, toys and medicines -- some that needed to be warm, some cold, some IV some oral, and some that needed to be protected from light, TPN bags, needles and tubing, ice packs, snacks and toys... and always extra clothing for Wesson, Logan and I in the common case of an extreme blowout -- which end it may come out of it would be difficult to predict. But that one day I had decided it was too much, only for a moment -- and I will never forget it.

 We had just gotten back to the St. Jude Target House apartment from about a nine hour long clinic day and I was getting the bags all packed up for the next day, setting out medicines from the fridge and mentally trying to figure out if we had missed a dose of something or not. Logan was in the bathroom scrubbing Wesson's freshly puke-smeared car seat cover. Both boys were screaming -- Wesson because he had just relapsed and felt terrible...and Keegan because he needed attention from at least one of us.  And in my moment of extreme weakness I threw my hands up, and said "Logan, I am done. I cannot do this, anymore" -- and with that I had my mental breakdown....tears and all.

And with that Logan raised his voice for the first and only time in our marriage of three years that I ever remember, and said "Kristi,  look at him....look at Wesson! -- he is alive today and he's breathing."

And that's all I needed to hear.

And so now because I cannot have those moments back, even the toughest ones -- no matter how much I think I need it.  I pray each night that I see my sweet boy in my dreams, and if I don't -- then I wait for tomorrow.

My sweet little angel.

We've already promised to do all that we can to make all that he had endured worth every minute of pain, suffering and heartache. We have to change something, and I know that we are only just people -- but it only takes one person to make a change.

So we pray for guidance as we start a new chapter, we pray for a successful incorporation process, and we pray for continued dreams of sweet sweet Wesson.

I am also currently in the proccess of trying to get Wesson's memorial slideshow up for the public to see. Hopefully I can get that done within the next couple of days for those who are interested, and could not make it to his Celebration of Life Service.

 

"Go Sweet Baby Go" -- The Wesson Littau Foundation

Well we have officially declared The Wesson Littau Foundation as a go.

We are currently taking baby steps, as setting up a foundation is a time consuming and lengthy process. We are in the initial phase of getting accepted by the IRS as a nonprofit, charitable organization 501(c)3. The foundation will be tax exempt, meaning all contributions made to the Wesson Littau Foundation will be deductible for income tax purposes.

We are also looking for any ideas and/or drawings for the Wesson Littau Foundation's new logo. I have been sent a few ideas from a few people around the community, and I love the creativity and ideas that we have seen so far. We are looking for something that represents Wesson as a brave warrior and hero, infantile leukemia and of course the color orange. If you have any ideas, drawings, or pics we would love to see your ideas and maybe we could use it for the foundation.

If you have any wonderful options or ideas, please send to wessonlittaufoundation@hotmail.com or you can contact me or Team Wesson via facebook. We would love any help we can get.

We are ready to help raise money and awareness in Wesson's honor, and we would love all your support.

We are very excited, a little nervous...and still learning a lot about the entire process.

More information on the foundation will come as we know more ourselves. We do hope and pray that you all plan to jump on board this new journey. Both Logan and I are fueled by anger, remorse and pure frustration about the loss of our sweet baby boy.

To be honest with you, I think we've both been walking around like zombies for the past four weeks....

Yes, it has been four weeks to the day since Wesson's passing. And it still makes me sick to my stomach.

I heeded the advice of my wise sister Dawn, and made a memory box for Wesson over these past few weeks. It is in fact not a memory box, but actually a large chest -- filled with 13 months of memories. Pain, tears, love, hate, prayers, gifts, poems, pictures, toys, blankets, pacifiers, NG tubes, flush syringes and alcohol swabs, one central line, bottles, thousands of copies of various lab tests, and onesies that no other child could ever wear but Wesson. Because they said things like "Tiny But Tough", "Superman", "One Tough Cookie" "Chick Magnet"...and molds of his sweet and oh so beautiful hands that we took shortly after his passing. Those same hands that I squeezed each and every day as he lay in the bed of the Sanford Children's ICU and then again in the St. Jude Children's ICU -- because that was the only way I knew how to reassure him that I was there, that I was sorry for what was happening...and that I will always love him.

I am thankful and forever grateful that God along with the amazing staff at both Sanford Children's and St. Jude Children's were able to "treat" my son long enough to give us 13 months, and a large chest full of memories of our sweet boy. I will never forget that intense battle -- long clinic days, extensive hospital stays, masks, vomit, blood, fear, transplants, GVHD, colitis, lots and lots of crying, the reccomendation for hospice on three different occasions, the decisions, lab tests, fatigue, painful days of waiting...but even through the ugliness of cancer, what I will remember most of all that we somehow found beauty in all of it through Wesson and his will to win. His vivacious spirit and contagious smile and laughter. His flirtacious and graceful desire to win over all of the female nurses, and his couragous defeat over cancer itself.

Despite everything he had been through, despite all oddds -- Wesson beat cancer and he smiled through the entire thing.

There is a lot that we were unable to share with the public, friends, and even family about the details regarding some of the ugly and even not so ugly parts of such an aggressive cancer and the treatment that must go with it. These are the parts that haunt me day to day, and most of all when I lay my head down to sleep at night.

These are the parts that to me are unforgettable. And why something must be done to forego change. The aggressiveness of infantile luekemia such as Wesson's is more often than not a terminal cancer...and most physician's will admit that if the disease does not take them, the toxicity of the treatment will.

And that is not okay.

I miss my boy so much that I feel like there's a knife in my heart that with each day that passes by someone pushes it in an inch deeper.

And that is not okay.

I do however want to share a story from this weekend that gives me hope when I'm at my lowest low and missing my sweet baby to the point where I'm not sure I can stand one more second. My entire family was in town for the opening weekend of pheasant hunting -- and Logan, Keegan and I were staying at my parents house so that we could be close to the family that was around and surround ourselves with the love, and fun and memories that comes with being together.

My sister Kara knew I was struggling to find peace on Saturday night, reminiscing on Wesson and his battle and all of the anger, frustration and tears that come with it -- and when the commotion fell silent and all of the others in the house were at rest...niether Kara nor I could find the peace to fall asleep. She comes upstairs and summons me out of bed and out to look at the night sky. I said "Am I going to need my glasses for this??" and Kara says "absolutely".

So we headed out to look at the night sky and what do we see but the most beautiful star filled sky a person could ever ask for. It was as if we were looking right into the heavens, and almost like we could reach out and touch each one of those galliant bright shining pieces of God's little angels.

And believe me if that had truly been possible, I would have reached up and grabbed the one that I spotted shining much brighter than all of the others, wrapped it in my arms...and never let go.

It was beautiful -- and it was Wesson.

Wesson found a way to bring his mom and aunt Kara peace that night, and he has shown himself in other places of which is so beautifully supernatural, that the details I must save for the book. My sweet boy has always found a way of making his momma feel better, at times of which I would have fallen to peaces otherwise.

And today as I opened one of our memorial cards received in the mail on Friday (sent to us from a local member of the community), that I had for some reason saved until today to look at -- it reads: "Perhaps They Are Not Really Stars in the Sky...Perhaps They're Openings in the Heavens Where Our Loved Ones Shine Down To Let Us Know They Are Happy".

So when at times I find my faith failing me, and I begin to wonder "why" God? -- "why" Wesson, "why" so much suffering, and "why" did you give him to us only to allow us to fall so deeply in love with him, and then cruelly snatch him away?

That's when I remember that bright and shining star on Saturday night, and I confide in the fact that Wesson IS still here. There he was in the sky in Memphis, TN when Keegan saw him in the form of a cloud as he left his body shortly before his declared time of passing on September 26th. In the tile at the Catholic Church right next to my grandpa Donald Steele, showing his very own grandmother that he has in fact rejoined the family circle at God's throne --- and that he is happy, safe, and finally pain free and in the loving embrace of his own loving great-grandfather.

So here is to the future and Wesson's legacy. We will keep praying and looking to God and our little angel Wesson for guidance on where to go next to help make things better.

 And until then, I will anxiously await for more signs of my sweet Wesson and his everliving and everlasting spirit.

Wesson's work here on Earth has only just begun.

A New Journey and a Will to Win

Well, Wesson's long and treacherous journey is now over. His Celebration of Life Service has come and gone....and we are now left with the pieces of our hearts (and lives) scattered all around.

So where do we go from here?

A question Logan and I had asked ourselves a long time ago, as we had feared and prepared ourselves for what may come of Wesson's future.

I cannot yet describe or write in words the pain that follows the death of a child. It's scary and confusing and deeply personal. Something I wish not to place in the hearts of those who have been blessed not to experience it. Maybe someday I will be ready to write about it, but for now Logan and I will keep this part of our journey to ourselves.

We have been contacted by several parents who have, like us, experienced the death of a child and for those of you who have contacted us...first of all God be with you and I am so sorry you too feel the suffering that we do. And for another, thank you for contacting us. Misery loves company, and I do not mean to be hostile or wish any hurt upon others...but there is comfort in knowing that we are not alone.

Many have made recommendations for continuing to write about Wesson's journey, as our caringbridge page has officially come to a close. We will print out each and every one of those journal posts and guestbook entries, and that will become a book for Wesson and him alone. But that aspect of Wesson's journey is done.

And now a new one will begin.

Wesson will not be forgotten. That I can promise. And as a mother who sat in a chair for two months in the ICU watching my son fight for his life...with absolutely no power to stop what was happening. Only to be able to sing, and touch, and pray for my son. I am done sitting, waiting...and watching. The pain will never go away and Wesson will never come back.

And as I have said before -- this is not okay. And so as we struggle to put these pieces of our lives back in place, we are learning they do not fit as they did before. We are now set out to walk new paths, and we have Wesson to thank for this. We will do what we can to forever change the future of infants born with this near death sentence of a disease -- whether it means raising awareness or a certain amount of funding for research.

It will be done. Wesson, you have my word.

We were too helpless for too long, and as I reflect on this thought it makes me sick to my stomach. But now we can help, and where there is pain, we find strength and we will use it for good causes.

Writing has become a solace of mine, and a place to go when my thoughts are running through my head and about to be spewed out as word vomit. So, the decision has been made to continue Wesson's Will to Win blog in honor of him and his valiant battle. It will also be a place to keep friends, family, community and whoever else may find interest in this part of our journey -- to be updated on where we decide to go with the future of research for infantile leukemia.

Lots of ideas have been discussed between Logan and I, and our families who wish to be involved with the process. Nothing has been set in stone, but a book is probably in store. A fundraiser in honor of our sweet boy is also an idea....but similarily nothing has been initiated quite yet.

Once something becomes official, we will announce it here.

But for now, we are still finding the time to gather ourselves together and try to live without our sweet sweet boy. We do know that life will not and cannot go back to normal, and we will never be able to resume our daily lives as we did before Wesson blessed us with his presence. We have seen too much pain and suffering at the hands of innocent children to simply just go on...

I spent the entire morning opening up literally hundreds of Wesson's birthday cards from August, as we had no time to open them before. What an eye opener, and almost an emotionally distressing experience. The belief that was expressed in those birthday cards from friends, family, strangers and our loving community -- that Wesson could and WOULD conquer his battle was completely and uttlerly breathtaking. The prayers that must have been sent up during his graceful fight had to rock those heavens till the gates nearly fell down.

Thanks to all of you who sent a birthday card for sweet Wesson, with a $1 dollar bill attached. This money will be added to the memorial funds that will be sent to St. Jude Research Hospital. I am proud to announce that Wesson's birthday donations, along with what we have been able to open so far from his Celebration of Life Service has added up to well over $5,000 dollars!

Thanks to all of you who have stuck with us through this journey, and we hope you continue to support Wesson's legacy and our WILL to WIN against Infantile Acute Lymphoblastic Leukemia.

This is only the beginning of what Wesson was sent here to accomplish. Through him we will continue to raise funds for research, until no more children have to suffer or pass because of this terrible disease.

So here's to a new journey in honor of our sweet, sweet angel above. We hope you choose to join us, and help when needed.

The blog will keep its name. Wesson's Will to Win cancer was accomplished, and although he passed...our Will to Win against the disease and the side effects that come of it will continue to live on.

So here goes....

"Go Sweet Baby Go" -- your valiant strength now lives on in us.