Everything happens for a reason....really?

"But if I've heard this saying once, I've heard it a thousand times - Everything happens for a reason. And possibly it does. I just haven't found the reason that this all happened yet." - Jerry Lawler

Everything happens for a reason....really?  How often do we hear that saying, say it ourselves, believe it as the only justification for our life's events.  Good or bad.  But is it possible that somethings just happen?  It is possible that there is no reason anything happens?  It is possible that we are left to seek out the reason? Whether to make sense of the senseless, give credit to the blessings, to justify karma or to sooth our weary souls.  Is it possible that the reason exists only after everything happens and not before it. Is it our duty to discover the reason?  Maybe that is the meaning of life.


Hope And Hope Again.

"Everything that is done in the world is done by hope."  Martin Luther

When I began this blog it was for me to reflect on the journey that I was, against my free will, forced on.  Where the CaringBridge blog acted as a play by play of our medical journey, Hope In The Storm would offer me a chance to dig into my feeling and sort out my own understandings or frustrations as to what I  was encountering as a single parent with a child battling cancer.

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The Marathon and Me

With just a few hours left, I impulsively made a promise to my son.  One that I had no idea if I could keep. Ultimately, I am not sure the exact reason I would make such a promise.  Even as I said it, part of me was thinking...."This is way out in left field. Can you even do this?" but it was big and I guess at the moment, when I could do nothing else, I needed it to be big. I will never know for sure if my brave 11 year old boy heard my tear soaked promise made in the twilight of his short life but I had heard it and knew that it was promise that I would have to keep.  A few short hours later on that early February 16th morning in 2011, when most Portlanders were sleeping in there safe comfortable beds, I watch in disbelief as the seemingly impossible happened and Tucker took his last breath on earth.


Walk For The Brave At Portland Marathon

So far I have raise $200 for the Walk for the Brave which is in 4 weeks.      $200 = 4 TAF Birthday Club Gift for brave kids that are battling cancer OR covers the postage for 16 gifts.  If that is all I raise, I will still gladly walk the 26.2 miles that I promised Tucker I would do in his memory. Because these kids are worth it. What they go through during cancer treatment makes a marathon a walk in the park. I would love to be able to send out at least 1 gift per mile. That would be $1300 or $312 to cover just the postage for a TAF Birthday Club Member. 

Tucker's Toybox sends birthday gifts to children nationwide that are in the fight of their lives.  After spending Tucker's last and 11th birthday inpatient at Doernbecher Children's Hospital and seeing Tucker share his birthday gifts with all of the other children who were there with him that day, we know how significant a birthday is to a family who is undergoing childhood cancer treatment. 

Please consider making a small donation to insure this very important program continues for these brave kids!  

"Thank you Tucker's Toybox for remembering Rett on his 5th birthday! He LOVES his presents! XOXO"

Riley with her TAF Birthday Club Gift

"Thank you for JJ's Birthday Gift. He absolutely loved that he got a package in the mail."

Thank you for your support...I am heading out on a training walk now! =) 


Tucker's Toybox gives toys to kids at Randall Children's Hospital

Fox news Coverage of Tucker's Toybox.

(Tucker's Toybox at Randall Children's Hospital Oncology Clinic)

Tucker's Toybox donated a toybox stuffed full of toys to the oncology clinic at Randall Children's Hospital at Legacy Emanuel in memory of Tucker Arnold. The day marks the beginning of Tucker Arnold Foundation hosting their programs for at the hospital.  TAF works with Child life Specialist and  Oncology Social Workers at Children's Hospitals nationwide to celebrate birthday's with kids that are undergoing childhood cancer treatment, as well as send Seasonal Birthday Parties to brighten up their days with a fun filled party.

(Plaque on each Tucker's Toybox)

I am very blessed to have the support of KPTV Fox News in Portland, Oregon.  They were the first to media outlet to cover Tucker's Toybox and his story to the world.  It is bittersweet how far we have come now that Tucker Arnold Foundation is 17 months old.  I am incredibly blessed by the love and support our friends, families and donors are showing my brave son by insuring that his last wish remains a reality.  As we find ourselves growing and reaching other hospitals nationwide to bring fun into the live of so many children here and afar I am reminded of sitting with him while he expressed his desire to have Tucker's Toybox created to remember him by.  To see the tears in his eyes as he expressed his fear that I would not be able to afford to buy all of the toys and the bold promise I made to him that I would never have to purchase a single one.  That as soon as people found out what he want they would make sure that we never were without enough toys to fulfill his legacy.

(Dr. Glover, Oncologist; Jen Arnold, TAF Founder; Deb Adams, TAF Co-Founder; Sarah Porter, Oncology Social Worker; Jessica Commings, Oncology Child Life Specialist) 

Tucker may not have imagined at the time his hope to bless other kids fighting for their lives would become a national organization.  That his spirit to give on his birthday would reach further than just Doernbecher Children's Hospital into the lives of families thought the United States, but by modeling his generous spirit our grass root nonprofit is taking on the challenge and changing lives.  I receive wonderful emails and comments from parents that our birthday programs are making a difference into not only their children's live but into theirs as well.  A single mom wrote to us: "I can not thank you enough for his gifts. As a single mom who does not receive child support cannot work due to son's health issues and thousands of dollars in medical debt there is no way my son would have gotten anything without you."  This really hit home for me as I was a single parent during Tucker's treatment and can relate to the financial hardship that she is facing.


Live Bravely

(Brady, Codi and Tucker a few days before he went home to Jesus)

"Who are you being right now by not powerfully choosing which direction you want to go? Just choose." - Jason Marz

I love this quote and it resonated deep in my heart for me. In my life this means not being swallowed up by grief when it would be so easy to. It means everyday doing one thing for the cause of childhood cancer so that no other mother will have to feel the sorrow that I have experienced. It means choosing hope over hopelessness and faith over helplessness.


Why Is Our Ribbon Orange?

Why is the ribbon for Tucker's Toybox orange when the childhood cancer awareness ribbon is gold? Good Question!!!

Tucker died of an extremely rare form of acute lymphoblastic leukemia called t(17;19) B-cell precursor ALL.  It is found in less than 1% of all ALL cases and to date has had no survivors.  The awareness ribbon color for leukemia is orange and Tucker Arnold Foundation displays the orange ribbon in memory of Tucker.

ALL is the most common form of childhood cancer and is typically very treatable.  What I didn't know before my child was diagnose is that leukemia isn’t just leukemia.  There are 2 main types of leukemia; Acute and Chronic. Of those, there are two forms call lymphoblastic or lyphocytic and myelogenous or myeloid.  These classifications account for the rate at which the cancer progresses and the group of white blood cells that are affected.  Now here is where it gets tricky...of those two types and forms there are several types of genetic variations to the cancer's dna structure that produce different proteins within the cancer and thus affect the effectiveness of the combination therapies used to treat leukemia.  So clearly leukemia isn't just leukemia.  

Tucker's leukemia produced a t(17;19) chromosomal translocation that encodes a chimeric transcription factor called E2A-HLF.  What does that mean in layman’s terms?  Two chromosomes (the 17 and the 19) within the dna of the leukemic cell traded places, which created a fusion protein (aka: force field) that caused the cell to be resistant to the combination therapies that are designed to destroy it.  This type of mutation or rearranged chromosomes can happen with other chromosomes and each time produce a different affect on how the leukemia will react to the combination therapies used to treat it. 

When I first heard of this I went to Google and looked it up only to find next to nothing and what I did find was dated in the 90's.  I knew the cancer was rare but I was shocked that is was so rare that I couldn't even locate one person who's child had the same form.  Since Tucker's death I have only learned of one other patient so far that had the t(17;19) translocation, who has since earned his angle wings as well.  It was heartbreaking to learn that very little study was being done on this form of leukemia and all of it in Japan.  I am happy to say that two different labs in the US are looking at the t(17;19) translocation and grateful that this in part due to Tucker's case.  Now the most current medical report written is from 2011 and is about my son.  

When  Tucker was first diagnosed I was told he had the good cancer to get only to find out that it was actually one of the worst kinds.  By raising awareness of rare leukemias and the t(17;19) translocation we hope to help the public become aware the leukemia just isn't leukemia. We want to shine a light on this fact and encourage more people to get involved and investing in the research of rare leukemia's.  We are excited that Tucker's oncologist, Dr Chang, is dedicated to researching rare childhood leukemias, now including the t(17;19) translocation.

So while Tucker Arnold Foundation encourages and supports all childhood cancer research and awareness we proudly displays the orange ribbon to bring awareness to rare leukemias and to raise funds for researching the t(17;19) translocation. The more the public becomes aware that there still are leukemias that we are unable to cure the better chance we have to win this battle. 

To get involved and support our efforts please follow the Childhood Cancer Bites and help us take a bite out of rare childhood leukemias. 


The Iceberg

This is how remission was described to me. What the doctors can see in the blood work is like the what you can see of an iceberg. When they can't see the top anymore it is called in remission or NED (no evidence of disease).....not cured. Remission is a complete or partial elimination of the visible signs and symptoms of cancer. What they can't see in the blood work is what is going on at the molecular level or the trace amounts of cancer that could still be in the body. This is called minimal residual disease (MDR). That is the bottom of the iceberg that is massive and hiding in plain sight below the surface. It was that part of the iceberg that took down the unsinkable Titanic. This is why a patient relapses and why it takes 5-10 years of remission or NED to be considered cured. 

We have to be diligent in our quest for a cure and better treatments. I encourage you to invest in research. Know where your donation is going and how it will be used. 

Tucker Arnold Foundation is dedicated to raising money for the doctors doing the research. 100% of donations that are earmarked for research go to research. TAF keeps none of it for administrative fees. Please learn how you can join with us in our quest to go after what we can not see and break up some icebergs. And share this picture....awareness is the beginning. 


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How many children do you have? How to answer this question when grieving the loss of a child.

"Your children are not your children. They are the sons and daughters of life's longing for itself. They came through your but not from you and through they are with you yet they belong not to you."  - Kahlil Gibran

I was faced with this question the other day....I answered it with ease for the first time. I have struggled with how to answer this one not realizing that it was going to be a punch in the gut every time it was asked. Seemingly a benign question asked more often than I ever realized. Sometimes it is just idle chatter between strangers in an attempt to fill the silence and other times in actual exploration, in the process of getting to know someone or to fill out a form. Does your child have another sibling at home, in the school district....Uhm...he did? Even my doctor asked me at my annual check-up, and I am thinking, you are my OBGYN...isn't it in my medical file? Do I say two and go into a long drawn out clarification that one died or do I just say one and avoid the topic altogether.