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Welcome to Holland; A Little Perspective

I've been feeling awkward about the fact that our upcoming fundraiser for the Children's Tumor Foundation is an adult Costume Party (A Haunt for a Cure). It's for the benefit of the children, but children are not invited. It's a devastating crisis every day, yet we are having a party. I was raised by the two most anti-party non-beer drinking parents in the world, yet I've ordered 49 cases of beer and 72 bottles of wine. Conflicting things...

Bottom line, life with a child with severe health problems is a complicated maze to navigate through - especially when there is no treatment and no cure. I don't want to sit at home and feel sorry for ourselves. Actually, I refuse to do that. I want to do everything I can to fight back. And I want to have a good time doing that, and I want to show my children how to smile and embrace the good things about our life - not mourn for where we feel cheated or violated by "the way things were supposed to be". So this morning, as we're getting down to the wire for our planning of A Haunt for a Cure, I came to work and I was walking to Fountain Square to get something from Graeter's for an office celebration. I had gotten an email from the "NF mom's Rock" Facebook page. I read this story, and it hit home for me SO MUCH. It was perfect. here it is:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I couldn't have said it better myself. With this tragedy, I have been shown what really matters in life. I have an unbreakable bond with my children and my family and friends. I have the most amazing people across the country and the world that are all working with me - together - for a common goal. I never would have known any of these people and they are now my family, I love them and my life is better for going through this journey with them. It still sucks that my baby has to be sick, but he's happy; he has no idea that his struggles are extraordinary. So I feel like I'm doing all the right things.

After I read this story above, while on my walk this morning, I put my phone down and started looking at the beautiful things around me. I walked in the building, walked up to the elevator - and the door just opened up for me, I didn't even push the button. I thought, "this is going to be a great day!" Attitude is 90% of the battle. Our Haunt for a Cure is going to be a great time AND a great success to further the research to find that desperately sought after treatment and a cure to help my sweet boy and all of his friends that suffer alongside him. Welcome to Holland.

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.

A Big Win Fighting Plexiform Tumors - THERE'S HOPE!

I have a HUGE praise. It is best said in an email that I sent to my fellowship group:

This is about Aaron, he is 16 and has NF1 (like Jesse), he lives in South Carolina and travels to the doctors at Cincinnati Children’s Hospital for NF. He has a plexiform tumor (like Jesse) but his is on his spine – deteriorating his spine – and goes down and wraps around his leg. He has had multiple surgeries and has lots of titanium hardware built inside of him to attempt to functionally replace his spine and hold him up. I think you all realize there is no treatment and no cure for NF and that he had had to deal with “there is nothing we can do to stop this” for him and has been devastating to him and his family. Aaron is strong, courageous, humble, and most importantly faithful to God. A clinical trial opened up at the National Institute of Health (the end all highest medical institution – governs all things medical). This trial is an experiment to treat plexiform tumors (like Jesse has). Note that a plexiform tumor is a very complex tumor intertwined with nerve endings and blood vessels so it is impossible to operate on. Plexiform tumors can turn into MPNST’s (Malignant Peripheral Nerve Sheath Tumor), which is fatal. Here is an update on Aaron:
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After 16 weeks of the new drug Aaron and I have returned to The National Institute of Health. We reported to the doctor that after the first couple doses in the spring he has had almost no side affects of the drug he is taking. Aaron had his usual mri and lab work done, his physical and meeting with the doctor. Overall Aaron has handled the medicine well; a few things to keep an eye on are weight(he lost 6 lbs this summer, he needs to have gained weight when we come back), memory (they want to know if the medicine is causing him to have problems in school with memory/learning, junior year is not really a good time to be experimenting with this), and illness (his counts are at a constant low so he needs to stay healthy). They did not have the mri results at the meeting in the afternoon because they have a way of measuring the area of the tumor they can see by volume and comparing to previous scan to get the result. In Aaron's case since they can no longer measure any tumors from his pelvis up because of the hardware in his back they use his left thigh. They reason that if the tumor in the leg grows so do the back tumors and since they believe Aaron's tumor around his left thigh is an extension of his spinal tumor that this will be true for him. Logically then, if the tumor in his thigh is shrinking, then they say the back one does also. At 6:50 tonight the doctor called and told us that Aaron's tumor shrunk 11 percent!!! Holy cow! Tomorrow we will pick up 4 months of medicine and scoot on back to South Carolina.

In December we will return and do this all again and hope for another 11 percent!We are going to plan a trip to Cincinnati to see Dr. Crawford and the genetics doctors for our annual checkup. Dr. Crawford has said that he can't do any more surgeries until the tumors stop growing so we may have a window soon to finish the job, we'll see.Your continued prayers are appreciated, specifically for Aaron's doctors and for Aaron's continued strength and stamina thru the year. One of my favorit verses is 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." Today was one of those days when God's promises come to life right in front of you.
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PRAISE GOD! I think Jeremiah 29:11 is a very familiar bible verse to those in my fellowship group. These verses that we study keep coming back to us all in our lives along with Praises like this one for Aaron. Not only Aaron though, this is a gigantic praise for Jesse and everyone we know and love that has dangerous plexiform tumors. This is that hope that we so desperately seek. This is a light to remind us to trust in God and believe that he DOES have plans for Jesse and Aaron and all others with Plexiform tumors, he plans for them to prosper and give them hope and a future.
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and this is my response on Aaron's Carepage:
by Jill Markland
I am totally crying!!! I am so happy for this news. Aaron is such a hero to me and to my little Jesse. What Aaron is doing with these trials puts him through so much with no promises. Aaron (and his family) face all of this with such bravery, strength, and selflessness. I am so happy that this is one trial that is finally helping Aaron, but I am also SO GRATEFUL that Aaron has went through all of this and it is offering hope to me for my son, Jesse, who also has plexiform tumors. Finally, there's hope. We don't have to just sit and wait and watch - we are on to something promising. God is good!

Hebrews 11:6
And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.

Jesse's Poem

Jesse Markland is active, sweet, and smart
His eyes are deep brown
They melt your heart

Playful and mischievous is definitely his style
He gets out of trouble
With his beautiful smile

As he turned two I could take it no more
At a touch of his head
In pain, he’d drop to the floor

It wasn’t mistaken and it wasn’t mild
It was unexplainable misery
To much for my child

From one to ten in measuring the pain
He was a forty-five
Like he’d been hit by a train

We wanted to know, what could it be
We learned and were horrified,
He’d never be free

Jesse has been diagnosed with a horrible disease
We watched him sleep quietly
As we wept, No, dear God, please

No treatment No cure are the words that burn
Our faith in our God
Is where we would turn

Nerves of his head and skin cause the pain
He has tumors all over his body
And one in his brain

He has five separate doctors to see
He knows tests, needles, and drugs
He just turned three

What he has is NF1
I’ve mentioned his challenges now
There could still be more to come

NF1 is progressive and unknown
We won’t see more coming
Even when he’s grown

We’ve been sad but we have to be strong
To let this beat us
Would be so wrong

We raise funds for the research to find the cure
We won’t just sit and take it
And that is for sure

Each night is the same that I pray
A treatment will be found
There will come a day

Overcoming Our Fears

INTRO
I am mom to NF Hero, Jesse Markland. Jesse is now 4 years old and has Neurofibromatosis (NF1). This means he has multiple café-au-latte spots, about 20 – 30 dermal neurofibromas (small tumors), 1 plexiform neurofibroma (more complex tumor), an optic glioma (brain tumor behind his left eye), his legs often hurt for an unknown reason, nerve pain across his shoulder blades that causes him to scratch and dig at his skin until he bleeds and scars, and chronic/severe nerve pain at the back of his head. Even though one of his NF symptoms is a brain tumor, Jesse’s worst NF Manifestation is the head pain. Our life revolves around his head pain 24 hours a day, 7 days a week. It is so severe that without medication and a nerve block procedure that has been done, Jesse’s head is unable to be touched. Raging cries of pain do not begin to describe what he has gone through. He takes a liquid pain medication 3 times per day, two additional pain pills at night, and he is now scheduled to get regular nerve blocks (which is surgery for a small child)to numb the area of the painful nerves. He is only four years old. Not long ago, someone told me that Jesse must have walked into a nest of mosquitos, he had bites all over him. My reply, “no, those are tumors”.

WHAT’S THE WORST NF MANIFESTATION?
We have been going through this highly emotional journey for about 2.5 years now and it has led us down many roads. Recently, the topic of “what’s the worst manifestation of NF” has come up in different conversations. I had to think about that, but really only for a moment. I think the first answer that comes to mind is obvious physical deformities caused by tumors. Others might say learning disabilities. Someone that has had their leg amputated may say bone density. Someone that has lost their vision or their hearing would most definitely cite their loss as the worst manifestation. For the families left behind, malignancies that have taken our loved ones, far too early, would most definitely top the list. NF is a progressive disorder and it affects everyone in a different way, all of the scenarios above are a possibility to anyone with NF. Most people are diagnosed with NF but have never heard of it and definitely don’t know anyone else that has NF; what a lonely, desperate feeling. Whatever the manifestation, the unknown and very likely silent attacks beneath the surface of the skin is __________ - there is no word to describe that fear. I personally believe that it’s the isolation and the fear which are the worst manifestations. These are two manifestations that are basically unrecognized but are the only manifestations that truly bind the NF community together. EVERYONE with NF, and anyone that loves someone diagnosed with NF, have all felt that isolation and fear.

HOW WE GOT HERE
This was the case for me when Jesse was diagnosed and I felt so very alone and incredibly terrified. I personally hope that no one has to learn about NF the way I did. I knew that something was gravely wrong with my baby, but I couldn’t REALLY get anyone to listen to me. I had to fight for him to get him diagnosed – I was determined to find out what was wrong and FIX it. Well, I eventually learned that there is no “fix”. But leading up to that point, I had a phone call from my doctor while in the recovery room after an MRI saying my son may have Neurofibromatosis. Neuro – what? A nurse wrote it down for me and sent us home, neurology would see him in 2 months. At home, alone, with Jesse sleeping in his crib, I googled this horrific word and learned what the internet had to offer me about Neurofibromatosis. I was alone, sitting at my computer. There were plenty of graphic pictures to offer this mother and they were all I could see while I watched my baby sleep. When I saw those first words associated with Neurofibromatosis – The Children’s Tumor Foundation, those words nearly destroyed me. I sat at my computer, alone, and learned that those bumps all over my son were tumors and that there was no treatment and no cure. This only happens to other people, not MY son. I felt so alone and was definitely led astray on-line by those pictures. As Jesse's parents, we are already terrified beyond what anyone should ever have to imagine for what our sweet little guy may face in his future in addition to what he has already had to endure in his short little life.

BREAKING THE CYCLE
After digging deeper; today those words, The Children’s Tumor Foundation, are the very words that offer me hope. Fear and Faith are two very powerful emotions and it is a matter of choice of which path to follow: Succumb to the Fear or have Faith in a higher power and Faith in the programs created by the Children’s Tumor Foundation that are feeding the research that I truly believe will defeat this monster called NF. We did not give up, we found a community through the Children’s Tumor Foundation and now we do not feel so alone. When the phrase No Treatment and No Cure enters your life; your whole world shifts focus. Where there are options, is how we decide to allow it to affect their lives. There are programs like Racing4Research (www.racing4research.org) or the NF Endurance Team (www.ctf.org) that give an outlet to cope, fight this disorder, and find each other versus staying at home and surrendering to this monster. There is a powerful way to connect with each other by sharing our inner struggles and coming together to persevere as we face the unthinkable. We must find a way to live with NF; but NEVER to surrender to NF. In the face of adversity, fear, and no hope; there are options to stand up and fight for a better outcome.

When I was a teenager I once found myself in a horrible situation, I learned in that very moment that fear is the most powerful human emotion in existence. I didn’t know at that time, but I had no idea what fear was until I was faced with my child being diagnosed with NF. I fight every minute of every day not to succumb to that fear. I have to remind myself repeatedly that this is no time to fall apart, my child needs me to fight for him. He needs me to be involved in these programs and do everything in my power to add funding to this research. It’s his only hope. By being involved in these programs, an added bonus is he is no longer only an NF patient and sufferer. He is an NF Hero. He will not only remember his childhood spent in a hospital or on constant pain medication – he’ll remember the amazing feeling of being the star at the Daytona International Speedway, sitting high upon a driver’s shoulders. Like we were all just there for him, acknowledging his brave battle.


My apologies if my thoughts are scattered at times, navigating the war with NF is sometimes a very tricky maze. Many times when we hit a wall in front of us, we have to double back and try another way to either convey our message or find the right path towards our end goal; ending Neurofibromatosis through research.

Jill Markland
Jesse's mommy