Tag Archives: The Children’s Tumor Foundation

September 8, 2013 · 11:48 pm

Leaving room for “God Room”

In the Gospel of Mark, chapter 2, Jesus is continuing his ministry of teaching the people and performing miracles. At Capernaum, Jesus was at a house where the crowds of people came in at so much abundance that there was no room to get into the house, let alone by the door.

There were four friends who had a lame friend. Because they could not get through the main entrance, these four friends carried the lame friend to the roof, made a hole in the roof, and lowered their friend right to the feet of Jesus. Seeing their faith, Jesus healed this man both spiritually and physically:

Which is easier to say to the sick man, ‘Your sins are forgiven,’ or to say, ‘Get up, take your bed, and start to walk?’ I am doing this so you may know the Son of Man has power on earth to forgive sins.” He said to the sick man who could not move his body, “I say to you, ‘Get up. Take your bed and go to your home.’” At once the sick man got up and took his bed and went away.

Mark 2:9-12a, NLT

Today, childhood friends from my hometown, sister and brother-in-law, and friends from college days walked the Children’s Tumor Foundation NF Walk in Denver, Colorado. Their walking as a team and raising support on my behalf for the foundation and its future research made me think of the four friends of the lame man. They walked with the same hope as any persons living with a disease: that someday there will be a cure. Right now there is no cure for my disease (that circumferences NF1 as well.) Sometimes these walks for diseases seem so helpless in the bigger picture of the dying world, but what matters is keeping the focus on a hopeful future found in Jesus Christ.

But it is easy for me to lose sight of hope when all I see everyday is my body aging away. I don’t even know what to pray for at times. I know God has given knowledge and wisdom to countless research teams and doctors across the world to help patients such as myself;  I am very thankful for my team of doctors and therapists and trust their guidance. But even they can only do so much. It is our human nature. It is where “God Room” comes into faith.

I just finished Franklin Graham’s autobiography, Rebel with a Cause: Finally Comfortable Being Graham. I know I am about fourteen years behind from when it was written, but I am glad I took the time to read it as it taught me a few lessons in life and faith.

In one of the chapters, Franklin accompanies his friend Bob Pierce–founder of Samaritan’s Purse–on a world tour to see first hand the work that Bob ministered through Samaritan’s Purse to the hurting, sick and needy around the world by helping assist missionaries already in the areas. During the trip, Bob tells Franklin of leaving room for “God Room.”

‘God Room’ is when you see a need and it’s bigger than your human abilities to meet it. But you accept the challenge. You trust God to bring in the finances and the materials to meet that need.

I thought about this in my own life. With starting Physical and Occupational therapy a lot of my mindset has been, “These are things I can no longer do easily on my own or at all on my own.” It gets frustrating. So last night, I prayed for “God Room.” I didn’t go through my whole list of things wrong in my body. I figured God already knows that…but what I focused on was trust–trusting that God would (will continue) to meet my needs–both physically and spiritually. My physical condition is out of the ability of myself and doctors…but not out of God’s ability. With Him all is possible…and that means the “God Room” is pretty big!

*Graham, Franklin. Rebel with a Cause: Finally Comfortable Being Graham. Nashville: (Thomas Nelson, Inc., 1999.) Page 139.

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July 21, 2013 · 7:12 pm

The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If you are like me, you may be wondering how you are going to write your Christmas card this year; thankfully, we still have another six months to figure that out. 🙂

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older, overcoming new physical limitations, visited my sister a few times in Columbus and Megan visited from Colorado…and last but certainly not least: I wrote about my life (limit 1500 words) for this book NF2: Our Journeys.

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January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate in this publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it back to Jess saying it was final on my end. I picked my “author name” for the introduction and submitted a picture. (Muffy is famous! 🙂 ) By this time, I now had told my family about Jess and the book; I had mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations, such as, physical changes we have endured, emotional battles we have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and (though good intentions) need to make a better effort to seek out the Deaf community here. It has also helped me to seek out the possibilities when life hands you disabilities; I believe God placed this book opportunity in front of me for a reason–because these past six months, I have seen my body change and weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by God’s strength and mercy that I can still function what I am. And He has shown me in abundance the past few months that what I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks. A few days ago I thought of the hymn “Blessed Assurance.” I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

– – –

To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

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June 24, 2013 · 6:55 pm

Team: We Walk with Mel!

Dear Family and Friends,

Galatians 6:2 says, “Bear one another’s burdens…” and yesterday was another example of how you reflect this verse in my life as I walk with NF2. DSCN2250

I was never expecting to raise a lot of money, but through your generosity, I was able to help contribute over $800 to the NF Walk cause: research. As a whole, the Cincinnati NF Walk raised a few hundred d0llars over their goal of $25,000!!!

Maybe I have not talked about it as much as I should (because to be honest, I had been putting myself in denial of reality), but it is no secret that I am running out of options for treatments. Even the steroid treatments I am currently on will not last forever…only God knows the timing of it all. So yesterday when my sister asked why I was walking, I told her I was walking to help raise money for research and then after a pause I said, “And just because I can.”

I can walk! And I think I should get into a praise habit and thank God every morning when I get out of bed, because it is only through God’s strength that I still can. Yesterday was not an easy walk. In fact, it was much more physically enduring than the Women’s Center Walk last month or even my fall off the treadmill a few days ago, but the truth of the day: I was there, because I can walk!

But even though I can still walk, I would have never made it through the 2-mile trek alone. I consider you all on my “team,” but I know everyone who wanted to be there could not all be there and thank you for your prayers from afar. I did have a team with me though: (L to R) my younger sister, my aunt and uncle from NC, and my oldest sister and brother-in-law. Together they helped make my day both a fun one and a successful one.

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As we got started, we were first welcomed by Storm Troopers and bounty hunter from Star Wars. Being a fan, I thought it was hilarious they were there acting like crowd control and took a picture with them.

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As you can see, there was quite a good turnout of walkers. Sadly though, we did not get to talk to hardly anyone else there, because by the time I changed my tee shirt and we did our picture with the signs, the walk was about to begin. We were able to talk to one family that had NF1, only for a few minutes. They were very nice. DSCN2249

Before the walk officially began, they wanted a big group picture–which should be uploaded on the CTF website within a few weeks. So, up this huge hill we went and as long as you could see the lady with the camera she could see you. Then the walk started (thank you David and Uncle Jim for helping me get off the hill!) 1058790_813723071694_1175541122_n DSCN2253 DSCN2254

We stopped often so I could take a drink and catch my breath. It was a lovely day but a toasty one!! By the time we got half way, I felt so tired (due to heat, not enough water intake and not a great breakfast to jumpstart my day)…that and my left foot was achy! Combination of bad balance and the path tilting slightly to the right, my left foot was feeling the weight!

The NF Walk took place at the Sharon Woods Lakeside Lodge which had at the half way point an area with bathrooms and picnic tables in a shaded area. This is probably why I came in last, because we stopped there and I was able to eat an apple, which greatly boosted my energy to finish no matter how bad my left foot felt. DSCN2258 DSCN2256

There did come a certain point when I started to get really wobbly even with my walking sticks, just from being fatigue. I also find that I could not get much conversation in as turning my head to the side while walking makes me wobble too. So, my aunt suggested I forgo the rod and staff and use their arms! It helped me forget about my feet and I got to get some chatting time in too (between catching my breath!) 1060338_813741854054_844995300_n

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And I finished, even if a bit unstable on my feet! 🙂

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Instead of joining the picnic, my aunt and uncle treated us to a delicious lunch at a local deli. 🙂 They left afterwards to head home and the rest of us made our way back northward, stopping in Lebanon for ice cream at a place called Double Dip. If you are ever in the area, it is worth your dessert appetite.

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…

I just wanted to say thank you again…from the bottom of my heart for the love, support and prayers that you have shown me over the past ten years and this week in raising funds on my behalf for NF research.

God has richly blessed me with the abundance of family and friends and I can truly say, “I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.” (Philippians 1:3-5)

~ Mel

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June 21, 2013 · 12:44 am

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make a cup of coffee, feed Muffy breakfast, watch a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising awareness and funds for research with the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my family to see if they were interested still in the idea, as I would only be I interested if someone walked with me. I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I am a symmetric person (the accountant in me to balance like an equation), and when I exercise it is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already blackish-blue nose, Marcia is making all the necessary phone calls in order to figure out what to do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most importantly the bleeding factor, even though I was not showing any signs of something drastic. We ended up leaving twenty minutes later for the ER and spent the next few hours there. Thankfully, my nose is not broken and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

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August 13, 2012 · 12:51 pm

More Art on the Lawn Photos!

Hello all!

I hope your Sunday was a pleasant day whether you worked or you rested. I rested!!! I pretty much just got nothing done! I tried to upload some pictures on here yesterday and ended up falling asleep again on the couch! I guess I needed it. Yesterday was a nice time to reflect on Saturday’s events with my family and discuss future possibilities. This really was a huge event for me…such an open door to step through and see where it leads. It is exciting, and all so new–I have more things to learn about in different areas that are in the making. Currently, I do not have any paintings displayed at any other locations. There are several good possibilities for later events, so  I will be sure to keep every one updated of the where and when details as time goes on. So if that interests you, just keep checking occasionally for new posts concerning this matter. They would be referenced under the paintings archive. 🙂

And finally for today… more pictures!!!

This was the front left side of my booth. The story board shares a bit of my story and highlights of my past ten years of living with NF2.

My family was present, but this is the only picture I got with a family member. 🙂

My booth was right off the sidewalk! Just perfect!!

And as promised–a few of my favorites!!!

Call me a cat l0ver, but this is one of my ultimate favorites!

Thanks to my sister for the idea of putting the word “HOPE” instead of flowers! 🙂

The day after I finished this painting, a cardinal flew past my windshield on my way to work. I was passing through a wooded area, just a beautiful setting and a big surprise! It was special…my first sight of one since the move here!!

I like the simplicity of this set and the color blends. It started out as a place to use my extra paints. Then the idea formed in my head! Notice any patterns?? 🙂

And this is a true representation of my brushstroke style and the abstract painting that I just love! The contrast from light to different shades of dark with the green spot as the middle focus. I didn’t plan it that way, but that is just how it turned out. 🙂 It was a really fun painting! I was painting in my normal fashion–when my concentration was disrupted by a splatter of blue paint; I went in for the curve like motion and my force was too strong! I saw a whole blob fly in the air (literally) and land across the room on the floor. LOL. Whoops!! 😉

Lastly, another peacock! It is quite a bit bigger than the one I painted for my sister a year ago. I used sort of the same format, but different style of the feathers and facial features. My favorite part of this painting (or on peacocks in general) is their mohawk feathers on their head! 😀

Thanks for taking the time to see my pictures! I hope you enjoy them, because each one was fun to paint and create. As you view my work, remember that all things are possible with God! He shows it to me time and time again with every new painting I paint. I would have never in my wildest dreams see myself doing something like this. And yet, here I am. 🙂 I am so excited to see where this leads…and lots to pray about in the mean time! Have a great day everyone!

More to come…

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August 11, 2012 · 12:39 am

Art as a language.

Have you heard the phrase that when people are fluent in a language, they dream it? If art is a language, then I am fluent in it. 🙂 The last few weeks, I have been painting in my dreams! I can see the colors and feel myself doing brushstroke techniques…blending and creating. Considering this week’s schedule, I guess the lack of sleep and all those hours in the basement were rewarded today!!

Let’s just say today was AMAZING!!! What a neat experience to be part of the Art on the Lawn Festival in Yellow Springs! I met so many nice people and some of my friends came too! It was a long day though! Starting out the event with only a few hours of sleep is not ideal, but I am planning on catching up on sleep tomorrow. Anyway, the day was a grand time! Kicked off the event by twisting my ankle in a hole incognito by the grass as I was walking to the registration table. No harm done…only grass stained pants! My family was there to help set up, which I think they did a superb job!! (Kudos!!!) During the day, most conversations were giving information…most people have never heard of the disease before. I had a story board there with some pictures to explain some of my story, which helped a lot to understand about the genetics and why I have the disease. Because a portion of my proceeds are going to be sent to The Children’s Tumor Foundation, they were able to send us flyers for more readings. I think we passed out all but two! I was amazed though at the occasional conversations with people who are either cancer surviors or knew someone who struggled from other benign tumors or even NF1. To think that these diseases are so different and yet there is a common ground. We understand each other. 🙂

Today just could not have been any better! I raised over a hundred dollars for The Children’s Tumor Foundation! Thank you everyone who contributed! God even blessed the day with super dark, rainy clouds that never poured! Only a few sprinkles! And to end the day, some of our family friends were there to help take down…which was a blessing, because I think by that time we all were pretty much exhausted! I even fell asleep at the dinner table! LOL. My favorite part of the day was sharing all the excitement with my family. They deserved it just as much as me. Although they would deny that–but I would not be doing this without their ideas, support, prayers and encouragement!

I was asked a few times today what inspires my paintings. Truly a good question! The only answer I can say is that this is a gift that God has given to me. I love to encourage people. And now I have a new passion to share my story, think of others above myself, stretch myself beyond what I think I am capable of doing, and have fun in the process. Today I was called an artist. As an artist, I am still not sure where this leads but I would love to be part of something like this again!! Right now, I just look forward to things getting back to normal for a few days: Back to normal sleeping schedules; back to one cup of coffee a day (not three!); back to normal work hours; and back to writing blog posts more frequently.  🙂 Speaking of which–I am starting to fall asleep. Time for rest! More to come…

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