Wishes

...from deep within the trenches...

Our house has been a flurry of activity for the past week, from the frenzy of Christmas morning to the aftermath that a Christmas puppy brings. We've feasted with family, visited with friends, and had more family movie times than I care to even mention!

What a blessing this season, so full of joy and hope, has been to my soul this year.

Just a week ago I was still so fiercely battling the effects of seeing the unavoidable fate that is my sweet son's last brain scan.

Just three weeks ago I was living near tears after watching a recent episode of Grey's Anatomy that featured a VHL warrior.

But this week I'm beyond tears and feelings of doom. The past few days have been nothing but Christmas. And because I know that nestled among all the trimmings, hanging on every tree branch, and wrapped in each and every gift, is the story of the birth of baby Jesus, this past week has been filled with peace, and joy, and hope.

And wishes.

1. I wish that eveyone would watch that episode of Grey's Anatomy.

While television can't portray the disease exactly as it's lived, this episode touched my heart.

And after you've seen the show, please, contact our local ABC news station and convince Ms. Linda H. that we need a human interest story about VHL on a Thursday night after the show!

(I'm floundering on this front!)

2. I wish for a cure for my sweet son.

Just freedom from bad scans and brain surgeries.
Just the ability to live a life without cancer.
Just a cure.
Nothing less.

Wishes from the Trenches

Today,

I will not...

*worry about earthquakes.

*wonder how a big plane lands.

*read stories about de-railed metro systems.

I may or may not...

*finish the laundry.

*prepare three days of meals.

*run to the post office.

I most definitely will...

*watch a special video.

*read a bit more about chromosomes, proteins, VEGF, and elonginB and C, and be prepared to learn more.

*wish

...for a safe trip to California.

...for good times with great people.

...a cure for my sweet boy.
Nothing less.
Cured.

Wishes from the Trenches

Steven and I are heading north tomorrow, up to the House of Hope in the Land of Mercy. He's scheduled for blood draw and MRI on Thursday, and we'll follow with the clinic visit on Friday morning.

I'm fairly confident that all is stable, yet the odd headache and irregular cases of hiccups that keep popping up this summer leave me a little rattled. I'm not feeling quite as tranquil as I was on the last two visits.

These August visits also leave me exhausted, and I'm not exactly sure why.

It could be the memories and emotions of our first trip to the NIH, or it could be the busyness that accompanies the ending of summer. In reality, however, I believe that the exhaustion is the result of flying north, catching a shuttle, settling into a room, drawing blood and imaging a brain and scan, visiting a clinic, catching a shuttle and flying home all in twenty-four hours.

This year, however, we're flying up on Wednesday!

While the thought of an extra 24 hours leaves me smiling with sheer joy, it also means an extra twenty four hours of pure and unadulterated joy for the grandparents...in the form of David

...and Mary.

Summer Fun!


Yet as I try to pack a bag and check for flight delays, I'm distracted. Distracted by wishes.

Three wishes
one day early.

1. I wish for a cure for VHL.

Nothing less than a pure and simple cure to give my sweet boy a chance for a long and healthy life.
Nothing less.

2. I wish for peace and grace during this trip.

We've been hit with some pretty shocking news over the past three years. I believe that we've handled these grisly reports with a certain amount of peace and grace.

I hope that we continue to do so, both in light of stable and in the face of worse.

Forever.

3. I wish for peace and grace at the grandparents' homes.

Goodness know that David and Mary also can create some pretty grisly situations of their own.

Wednesday Wishes

from the trenches

It has been one of those weeks that stresses my nerves.

The dryer is pouring out odd odors. David's PSAT scores became available to us, and the numbers worry me. I've become overwhelmed with the wonderful projects of giving that happen during this Christmas season. And, because of those bustling activities, our family has had left-over spaghetti three nights in a row...maybe four. Steven has been trying to find housing for next year, while Dale and I are still paying the bills for next semester.

It has also been one of those weeks that stresses my spirit.

And I received notice that another young VHL warrior, a university student just a year or so older than Steven, is facing yet another brain surgery for a VHL tumor. And the tumor and cyst sit near his brain stem.

I've never met this young man. I've read the details of his struggle with this tumor and the impending surgery as they have unfolded on the VHL Community website, but I don't know this young warrior at all.

And yet I feel that I know his mother's heart. I understand what she will be feeling as she sits in the surgical waiting room. I know how long the first night in ICU will be. I am familiar with the energy and effort that she will put into lifting her son's spirits in the weeks that follow. I feel that I know her well, and I ache for her.

At the same time that this young man is facing another atrocious surgery from this insidious disease, the rest of the Christian world, our family included, will be celebrating a season of hope, peace, love and joy, and anticipating the arrival of the Baby that gave us these eternal gifts.

How odd.

And as I try to wrap my limited mind around the mixture of emotions,
all that I can do
is wish.

Three wishes.

1. I wish for a cure for VHL.

A pure and simple cure is all that I'll settle for. A course of medication that will result in a 90% cure rate is what we need.

2. I wish for a successful surgery for this young man.

Pray that all goes well with this surgery. Pray for a quick recovery so that this family can celebrate the season. Pray that he has an easy spell with the disease for the next few years. Pray for his mom.

3. I wish that others will come to appreciate the season as we do.

I love Christmas. I love this holiday for all the right reasons. It is the beginning of a wonderful plan. And because of the birth of our Christ, I can truly live with hope and joy despite stresses, both large and small, that we face.

I wish everyone looked beyond the tinsel.





And hold your children close, teenagers and college students included!

Wednesday Wishes

From the trenches
as we head off to the "house of mercy"

Very early tomorrow morning, long before the summer sun shines through our kitchen blinds, Steven and I will be heading back to Bethesda and the NIH. I'm so very, very relieved that we're heading up at a time when Steven is feeling amazing!

He is so strong and well at the moment, it is hard to believe that he was feeling so horrible for the first six months of this year. Unfortunately, I was pretty much unaware of how many symptoms he was showing from January until May...napping on the weekends, complaining of constant headaches, holding his head while moving, a vague but constant discontent. I had grown so accustomed to witnessing these behaviors, that I didn't really have a clue as to how badly Steven felt. My perspective was definitely skewed.

But now he is feeling happy and strong, totally belying the fact that seven more tumors are invading his central nervous system.

So, we are not expecting bad news this Friday morning, but we are also not hiding our heads to the fact that the other tumors exist and the many rotten things that they can do.

We're leaving town at a time when we are so, so busy with this fundraiser. I really was stressing about the "Cure Steven" t-shirts, as I really wanted to give back to the many who will be up very, very early on a Saturday morning to serve my son. And the t-shirt options were so limited. I couldn't ask people to wear the shirts that we made...NEVER! Nor could I afford the $16 or more per shirt that we were being quoted. Today, however, we went to a really cool place that can produce the shirts that Steven and I designed together for just over $6 a shirt! And if you think that is amazing, just ask me about the man who worked with us to design the shirts!

And other than a few more odds and ends, the breakfast seems to be coming along nicely...and if you are interested in selling some of the raffle tickets that we have in our house, please email me and I will meet you on Saturday! We are feeling wonderful with the way this fundraiser is coming along!

We're also heading out of town at a time when the summer is starting to wind down. This has been such an odd summer for us...surgery and planning our first fundraiser ever...that I wonder if we had enough moments to relax and create those "lazy days of summer" memories that fortify us for years to come. I hope so!

So as we leave this house in the morning,
I'm traveling with
three wishes.
Three wishes for today.
Three wishes that are tugging at my heart.

1. I wish for no surprises this time at the NIH.
None. No more tumors popping up. No cysts. No surprises at all! None!

2. I wish for a cure for VHL.
As I've said before, nothing less than a pure and simple cure.

Six months of treatment ending with a medically induced remission and an 85% chance Steven will never develop another VHL tumor.
No more tumors, ever.

We're claiming a pure and simple cure.

3. I wish that my children will remember this summer as a time of happy memories.
I know these children will remember the laughs during vacation, the great plays at the baseball tournaments, and the lazy Sundays spent in Nana's pool.

But I also hope that they remember the strength and grace that Steven showed this summer. Absolute and amazing courage in the face and the aftermath of brain surgery.

And I hope that they remember the wonderful ways that friends have gathered round us, not only during times of need, but also in the joyful times of planning this amazing breakfast.

I hope they keep hold of those memories too!

Wednesday Wishes

from the trenches

Steven has been very dizzy for over two weeks now. This dizzy feeling that he has been talking about for the past two years now seems to be a daily thing...all day long. The new frequency and severity of this feeling has even caused Steven to change positions while laying down, as if moving will alleviate the feeling.

And in two years of this he has never complained. About anything.

This morning he held his head and said, "I feel miserable...I just don't want to feel like this anymore."

Oddly enough, since he hasn't been unsteady on his feet, I've been wondering if we should keep this May appointment with the local nuerosurgeon. I've been thinking that we shouldn't take any of the very valuable time of this doctor when we know that surgery isn't needed until more symptoms appear. And yet...

Now he is feeling miserable. Daily. All day long.

...when I ask Steven if he feels that he should keep this appointment, he answers with a definite, "Yes!"

Amid my mental floundering, I can only wish.
One wish.
For today.

1. I wish for a cure.
A pure and simple cure. Forever.

Oh yes, and I also wish that reporters would know their facts before they write articles and emails. Seriously, I contacted the writer of the "Hatfield and McCoy" article, and she emailed back to me...with some very strange and inaccurate thoughts about VHL. But that's another story.

A Wish

The ability to grant a wish

must be just about as magical

as having one fulfilled.

I wonder if the granters still smile

one year later.

We do.

Wednesday Wishes

from the trenches



A sweet young mother in our community flew with the angels this past Sunday, after a long and well-fought battle with breast cancer.

Today was her celebration of life, and last night we had the privilege of visiting with her family and sharing stories of this woman's short but sparkly life.

Last night, while I was honoring this beautiful woman, my children were with the grandparents. They were watching "Happy Feet" with Nuni and Pap. While on the drive back, I called Nuni and Pap's house to let the kids know that I was on the way. They begged to stay and finish the movie with their favorite "old timer", and I reluctantly said yes. I really wanted the kids home. After visiting with this young mother's family, I was tired...I was spent...and I felt the need to gather my kids and just be home. My children, however, had other ideas...ideas involving lots of soft drinks and a total disregard for bedtime. I relented, and they stayed.

This morning, at 11:40, I was called out of my classroom to receive a phone call.

Pap was in critical condition in a hospital emergancy room after having had a heart attack.

I was able to visit Pap in the ICU this afternoon. I have very few medical details to pass on about Pap, partly because I know so little right now and also because I don't really have permission to pass on that private information via the internet. I will tell you that it looks every bit as critical as it sounds.

So, in my weary, tired and spent state, all I can do is wish.

1. I wish for a cure for cancer.

2. I wish for peace and love and everything wonderful for Wendi's husband and three young children.


3. I wish for many, many, many more "past-the-bedtime-and-high-on-sugar" movie nights for my children and Pap.

Wednesday Wishes

From the trenches

I have a new theory about grocery shopping. I really only go once a month, and I shop BIG! Then during the weeks that fall in between the "splurge", I only have to buy meat, milk and fresh fruit/vegetables. It's a great system...except for the "splurge" day.

That day is exhausting! And overwhelming!

But it seems to work for me.

Today was a BIG! trip to the grocery store. It was difficult to find a spot for the 20-plus bags of groceries that packed the buggy. As I crammed bags into every nook and cranny of the car, I realized that I could fit the two flat taco boxes under the driver's seat.

And that is where I discovered the evidence.

Yes, there under the driver's seat was Mary's hair!

It seems that this past Sunday, as she rode with my sister to Ocala, Mary decided that she needed to tweak her bangs.

And so, for this Wednesday, I really have one huge wish:

1. I wish that my little girl didn't have sideburns!

That's all.

Wednesday Wishes

from the trenches

Steven and I are leaving this afternoon for Bethesda and the NIH. I’m going prepared this time. I've been reading about these cysts that are associated with the hemangioblastomas. In reading I was suprised to learn that the edema surrounding these tumors is the result of “vascular leaking”.

Vascular?
As in veins and arteries?

The cyst forms when the surrounding tissue it sated and can’t absorb any more fluid. The fluid inside the cyst is found to have a “protein profile similar to serum.”

Serum?
As in blood?

So now, to gain some control over this unnerving body of DNA that we call “Steven”, I need to know more.

Now I have questions.

1. Are we able, based on comparison of previous scans, the location of the tumor/cyst, and the amount of surrounding edema, to predict the future of this cyst? Will it remain stable long enough to get Steven through his first year of college? Does it need to be removed now? In the near future? In the distant future? Do we really need to wait for the more dire symptoms to appear before we take action? Or can we classify this as an unstable tumor/cyst and take action now?

2. What symptoms will we notice as the cyst in the cerebellum grows. Are we looking for mobility/balance issues? Are we waiting for the hiccups/morning vomiting? Is the occassional morning headache a symptom? Like once or twice a week? Is this hyper-gag reflex that Steven has been experiencing lately tumor related, or is it simply "just one of those things"?

3. When the tumor/cyst is finally removed, will these large aeas of edema resolve themselves? Will the "serum" be absorbed, or will Steven's brain forever be altered? Will the dizziness then disappear?

4. Can we have some control, please? Can we give Steven the control to start college and complete a year of dorm life? Just an ounce of control over things happening in Steven’s body, please? So that he can have some control in his "normal" life?

In the meantime, life goes on. Taxes are filed and the FAFSA is on its way, thank you very much.

David is once again, after a month break, diving head-first into a busy baseball season. His first AAU game is the weekend that we are gone. Thankfully he is still pulling respectable grades in high school. I reminded him daily that it is a good thing when your GPA is higher than your ERA.

Steven finally has an "easy" schedule to finish out his high school career. He still has three AP classes (and all to his liking, thank goodness), but the other 100 minute block of schedule is reserved for "teacher aide". HA! He's loafing for 1/4 of his school day, and his momma is happy with that!

Steven and David are enjoying the fact that they have lunch together this nine weeks. Can you imagine how much fun they have in that 25 minute span of the day?Steven told me that whenever he leaves the lunch table to use the restroom, David follows! Too cute.


Mary continues to humor us, sometimes intentionally and sometimes not. The other night she was talking to me about boys in the class. Her teacher was telling the class that separating boys and girls in school is sometimes a good thing. Mary agrees, as the boys tend to laugh when a girl makes a mistake. I reminded Mary (joking, of course) that she would have nothing to look at all day if they put the boys in another room.

"Right Mom," she replied. "Then I'd fall asleep at school."


What?
My little girl stays awake in 4th grade by staring at the cute boys?

I have been following the Bethesda/DC five-day weather forecast. It seems that we are in for very cold weather and maybe even a bit of snow. I decided yesterday that I would run to Target and get a pair of gloves. Target was out. I ran to Ross' in the same shopping strip. No gloves. Finally, seeing the minutes of my free hour ticking away, I hustled over to Marshalls. I found the last pair of leather gloves...hidden under a mountain of wallets...and they were on clearance!

Is that not a reason to celebrate?

Add the mixture of daily life with a dreaded but needed medical news, and all I can do is Wish.

Three wishes for today:

1. I wish there was a cure for VHL.

(A pill to make the tumors disappear would be fine. Even better, a 6 month course of medicine, followed by a declaration of clean DNA with an 85% chance that it would never go bad again! That's really what I wish for.)

2. I wish for snow.

(Lots of it. This Thursday, Friday or Saturday. In Bethesda, Maryland! )

3. I wish that children came with instruction manuals and guarantees.

That's all.

Wednesday Wishes

From the Trenches

On the morning of the 19th, as I sat in the car and sneaked a quick peak at the most recent MRI, I felt that old familiar panic...unable to catch my breath, thinking "surely not my sweet boy", wanting to cry but knowing that it wasn't the time nor the place, needing to move and pacing back and forth, trying to figure out why we are in this battle.

Pure and simple panic.

Once again, I felt as if I were in the trenches.

And I don't live this feeling every day. Trust me! But that feeling of being in the trenches is barely buried, always near the surface, and it comes back everytime an MRI indicates unstable tumors, or a new tumor, or possible surgery.

(The radiology report confirmed my view of the MRI. The cyst itself is just a little larger than the size of the tumor, doubling the effect of the small mass. It was noted, as I plainly saw, that the edema associated with this tumor/cyst is more widespread. However, Steven is still without symptoms, short of the constant dizziness. This is good news. The radiology report also confirmed my feeling that cerebral spinal fluid is still flowing properly. That is VERY GOOD! However, I still have no answers about the cyst...if it indicates a nearing surgery, if it grows quickly or if it grows very slowly like the tumors, what symptoms indicate a need for a clinic visit within the next couple of weeks and what symptoms indicate a need for an emergancy visit, etc. Still unanswered. )


And it resurfaces even when bad news is for someone else, and I feel so much for them that it hurts.

I think because I've been there.

So, for today, I have three wishes.

1. I wish there was a cure for VHL.

2. I wish there was a cure for brain tumors.

3. I wish there was a cure for breast cancer.

Because he is too good and too sweet and too loved for any of this...

That's all!