Wednesday, Jan. 30, 2008

One year today. One year exactly since our safe normal lives came crashing down. I remember exactly what we did the morning of January 30, 2007. Hannah had a 9:00am appointment for an MRI. She just had seemed to get much sicker over the prior weekend, with frequent and bad headaches and a lot of nausea. I remember Dave saying "something is just not right" so we called Dr. Mercier on Saturday and left a long message about Hannah's condition asking him for help. By Monday he called and told us that Hannah had an appointment on Tuesday morning for an MRI, and an appointment later that week with a neurologist. Neurologist? I didn't know why, but was willing to try yet another doctor.

We went to our local hospital, ELI for the MRI. I remember sitting in the MRI trailer (yes it was actually a trailer) with the technician as he performed the scan. It was long, Hannah had no anesthesia and they had to give her an IV for the contrast. A little over the top, I thought. I was sitting right next to him, watching the monitor as he performed all the scans, and asked him "can you tell if you see something on the scan?" He responded that he had been an MRI tech for over 30years, and could absolutely tell, but was always obligated not to say anything. What was he thinking that day as he saw the big tumor in Hannah's head, and the hydrocephalus on her brain? I remember him handing me the copy of the CD afterwards and saying "Good luck to you." Why would he say that, I wondered.

Afterwards, we stopped off at a deli for some breakfast before heading back to school. At 1:30pm I got a call from Dr. Mercier. As I was standing in the kitchen, he told me they had found something on the MRI. I said "what?" and his words were "it's a tumor." A tumor? How could it be a tumor? Only months before during one of her many visits to Dr. Mercier and his thorough neurological exam (that we now do at every clinic visit) his words were "well, it's not a tumor." I liked those words better. I knew that "it's a tumor" was bad, but the thought of cancer never even entered my mind.

So, it started. Dr. Mercier asked if I was ok, if he could call my husband for me. He said that he had already called the neurosurgeon and he was expecting us. "I have to go get Hannah out of school? I can't wait until she comes home?" I asked. No, the answer was no, it could not wait, go get her now. Now that scared me. I called Dave on my cell phone as I was walking out the door to tell him. "No, NO" was his response. I called the school and told them I was coming to get Hannah right away. They pulled her out of class, and her teacher walked her down to the office. I was trying to hold it together in front of her, not doing a very good job. "Why are we leaving early?" she wanted to know. I can't remember what I told her. I remember calling Diane to ask her if she could get Colby after school until we got home, Hannah had a tumor. I called my mom and dad and told them. I met Dave somewhere-either his office or the neurosurgeons office (I think there) but can't exactly remember.

We sat in the waiting room trying to be calm. I don't think we waited that long. The "wonderful Dr. Egnor" (in Hannah's words later, and ours too) called us in to show us the films. It was as clear as day, and it was big. From what I remember, he explained to us that Hannah had a tumor in her 4th ventricle, the cerebellum area. It could be one of three things, good, bad or very bad. The good option was an astrocytoma-often benign, after surgery no other treatments are needed, you're done. However, he didn't think it was an astrocytoma. The second option, the "bad" was medulloblastoma, a malignant aggressive cerebellar tumor that would require radiation and chemotherapy to prevent the tumor from recurring after surgery, otherwise it would come back, with 100% certainty. This is what Dr. Egnor thought it most likely was. The third option, glioblastoma multiforme is a recurrent malignant cancer, uncurable with any type of treatment and nearly always fatal. I remember asking Dr. Egnor, "so that means it's cancer? Oh yes, he said, it is." He couldn't say with absolute certainty until the surgery and pathology was complete, but that was his best guess from the films. He was right.

But what Dr. Egnor was concerned about immediately wasn't the tumor, it was the fluid built up on her brain. It was dangerous and had to be fixed right away. We knew we liked Dr. Egnor, but we knew nothing about him, other than he came highly recommended by Dr. Mercier. But, was he the right one to operate on our daughter's brain? We had just met him 15 minutes ago. We asked him for doctor's names for a second opinion, which he readily gave us. He understood our hesitation, but made it clear that no matter what doctor we went to, Hannah needed surgery right away-no later than Friday- to alleviate the hydrocephalus on her brain. It was Tuesday, he wanted to admit her the next morning to begin steroids to help reduce the hydrocephalus and perform the surgery on Friday. That seemed so fast, and so urgent, it must be bad, is what we thought.

We left his office, and immediately started researching Dr. Egnor online with Mike and Kathleen. We were really looking for any glaring bad reports against him. We could find information on where he went to school, his current bio, but no glaring reports of negligence. We looked up the other doctors also, same thing. It seemed an impossible decision to have to make under intense pressure, but one that had to be made, and we had no more time to research. That night, we decided to call Dr. Egnor in the morning and go ahead with him as Hannah's surgeon. So we researched, we talked, we packed bags for the hospital, we put the kids to bed and tried to act normal. We tried to lay upstairs and not think about Hannah laying downstairs with that awful tumor in her head and all the fluid on her brain. Would she throw up again in the morning? We slept, I think, but I remember Dave and I both waking up at 4:00am, unable to sleep any more and decided we might as well get up and get ready. We called Dr. Egnor to let him know we were on our way in, we were to be admitted to the ER at Stony Brook Hospital, where Hannah would start on the steroids right away. She was admitted rather quickly to the PICU (pediatric ICU). What she most remembers is the IV needle in the ER that they had to start in her arm. That was the beginning of the terror for her. The needle they put in was too big, she wouldn't move her arm and she was terrified.

And the rest is history. One year of trials and tests I never would have thought we could all make it through. One year of hell for everyone in our family, especially Hannah. But through it all, she has remained brave and focused and strong. Unbelievably strong. She has endured so much more than any child should ever have to. But through all trying times comes the realization of the good. The good of life, the good of people, the good of a community and extended family that has rallied around Hannah and our family to help us through this.

I talked with Hannah this morning about this "anniversary date" and her words were "what's so big about this anniversary date anyway?" We talked about how it's been a whole year since they found the tumor, we talked about the ER needle, we talked about the things that she has lost (her tumor, her hair) and about all the things she has gained. We talked about the things in her life that would not have been there before, like new friends (she said yes, like the Griffins), and other gifts in her life along the way (some funny things she pointed out like her new little piggy stuffed animals from Schneider's onocology clinic, her hats, her bandaids and of course her baby TOD!)

We've been blessed to meet many kids that are fighters, survivors, angels, warriors and miracles. I didn't even know this world existed before Hannah was diagnosed, now I'll never be able to forget it. Once your child has been diagnosed with cancer, it's like you walk through this invisible door, you're no longer in the "kids without cancer" group. It's not a door you can walk back through. On the other side is a long tunnel. The first part of it is black and small. But as you work you way through and time passes a bit, you start to see some light, you see that you are not alone and it gets brighter. The critical phase passes, and things "appear normal" again. Hannah's hair grows back and you can't see her scars anymore, Hannah goes back to school, we all go back to our everyday activities, but we don't go back to our pre-cancer days. So many people say how it must be so good to get back to normal, but they just don't understand that you don't go back. You can't go back because your lives are forever changed, and now we're in a different place, and part of a different group. This group may not be what we ever intended for Hannah or for us, but it's our reality, with it's ups and downs just like the other "real world."

Thank you all for your uplifting and ongoing support on this journey. You have lifted us up when we needed it and carried us through. It means the world to all of us.

xoxo Kim

15 comments:

Anonymous said...

Hi Kim,

You put my thoughts into words. You are right, we entered a totally different world that we can't go back to. I too will never forget the day I found out my son had cancer. I can remember the whole week before, every detail of the whole thing. And the rest of that year, kinda of all ran together. It is amazing what we remember!!! But, most of the time I can't remember what I walked into the other room for. Something about the word cancer and your child just doesn't seem to go together. But, in our world they do.

I keep waiting to get back to "normal life" but you know what? I am not too sure what normal is and if anyone has a normal life. Someone once said normal is just a setting on a washing machine. I tend to think they are right.

As for our new spot in this life, (cancer survivor), it's a great place to be.

And we are thankful for all our new friends along the way.

Hannah's hair looks great. It is really amazing how fast their hair comes back after they are done with chemo.

Take care,
your proton family from Boston
Gloria & Josh

Anonymous said...

Hello Prokops,
I've been thinking of you all week Kim. The "Anniversary Week" is always a hard one. I always shut the door and don't come out till it's over. I for one have to agree with what Gloria and Josh just wrote you..
"As for our new spot in this life, (cancer survivor), it's a great place to be".
It may not be what we had in mind, but we sure are glad to be here!
-Mary (and Tony, and Maisy, and of course Charley)

Anonymous said...

Dear Hannah,
We feel very blessed to have met you and Mom at the Proton Center in Boston. In came this beautiful little girl with, of all things, a Yankees hat on. Didn't she know she was in "Red Sox Nation"? You loved to wear the Yankees hat and shirt and your eyes just sparkled when we teased you. We will never forget that wonderful smile. Mom enjoyed it, too.

It has been a long and difficult year, Dear Hannah. Keep that special smile always and wear the Red Sox hat sometimes and think of us.
With Our Love,
The Griffins

Anonymous said...

Dave, Kim, Colby, Hannah & Tod,

After drying my tears I write to let you know that we love you lots and have been inspired by all of your strength through this.

You are all in our thoughts and prayers every day.

All our love - Randy, Angela, Logan, and Noah

Anonymous said...

Miss Hannah,
You may have temporarily lost your hair but your bright eyes and infectious smile always shined through.
Congratulations on this milestone event.
Kimberly Bass
(cousin on your mom's side from Indiana)

Anonymous said...

God Bless your whole family. Thank you for sharing your lives with all of us. I, for one, know that my life has been enriched and blessed by having you all in my life. Your thoughts, Kim, and your strength have been such an inspiration. Hannah Banana, words cannot even describe your bubbliness and love of life, even when it was harder than anyone should ever have to endure. Colby, what a fabulous big sister you are, Dave, I never had the pleasure of meeting you but know that you are as wonderful as the rest of the gang..and Riley and Tod you both helped in ways you will never know. A year has gone by and the light is glowing strong for a future as bright as Hannah's smile,now that you have teeth (-:
God bless you all
Love you
Mrs. V

Anonymous said...

Hello Kim,

I read with amazement your thoughts and words. It was just all to familiar. All too true. Thank you for sharing and ispiring. You all give us hope and courage.

Much love-
Sarah Hamilton

Anonymous said...

Hi Kim,
Your eloquence with words is amazing and I have always felt like I knew exactly what was going on this past year, all the heartache, pain, hope, courage,and love you and your family has faced. That has happened because of you and your wonderful gift with words. The courage all of you have is just amazing. I've not gone through (personally) what you havethis past year, so all I can do is emphathize with your trials and tribulations. But never have any of you lost your faith. That is clear!

Our thoughts and prayers are with you Prokop's daily and we pray that Hannah's recovery will continue to go well.

Your entire family is an inspiration for all of us.

Fondly,
Judy Kuchik Moorman

Anonymous said...

Hannah,

Wow it has been one year. You have been such a brave girl and I think of you every day. I am glad that mom has been so good about keeping everyone updated. I also sent messages to all of the government officials to vote for the bill for cancer reasearch for kids.

We are all looking forward to seeing you in April for Sydney's first communion. By then you will probably have alot of hair.

And I also remember getting the call about the tumor from Grandma and later from mom. I also just kept thinking that this couldn't be happening.

But I now see that you have had some great care by alot of great people and even though it is not something that anyone wants to go through we are greatful to all of the great caregivers that you have encountered.

Lots of Love,
Aunt Susie

Anonymous said...

Hi Kim and Hannah,
I was so touched by your anniversary post. It is so true what they say about when God closes one door, he opens another window. That certainly happens in any family where someone receives a dianosis of cancer, isn't it? Somehow our priorities become crystal clear and we learn not to sweat the small stuff. The challenge is to be patient with people who just don't get it that if you have your health, you truly have everything. Keep fighting - my prayers have been with you for the past year, as well as those of so many others. You are loved!
Mary Charters

Anonymous said...

*Hannah*,

Sorry I have not wrote a comment in a while but, I still always read your blog every week! Well I hope your doing good.

From,
Tori :]

Anonymous said...

Hi to all the Prokops

I want to add that there is one more aspect of this past year that needs to be mentioned here as well, that I know you will not.

Without this happening and being shared with all of us who want to help but are not sure how, we would not have known how inspiring a small girl and her family can be. Each of you have taught each of us the value of appreciating what we have, enjoying those around us and being certain to always be engaged in offering help and support to those who are in need of it, even when quite legitimately you could feel you are at the bottom of a deep dark hole.

Each of you has collectively and individually responded to the terrible situation that you find yourselves in and turned it into something that acts as a beacon to each of us.

So as year one passes, I want to acknowlege the inspiration that Hannah and Colby, Kim and Dave have given to us - I know that I am a better person for seeing this happen and learning from it, I suspect I am not the only one who feels this way.

I would not wish what has befallen you on anyone, but want you to know for certain that you have created benefit where there was none, and hope that brings you some additional comfort and support.

I look forward to seeing Hannah continue to thrive, with hair or without, and continuing to learn from your whole family's example of finding opportunity to help, comfort and share when most would not be able to, for many years from now.

xoxo
Liza

Anonymous said...

Hi Kim,
After reading your post- all I can say is...it's exactly how it is! We will never forget the details of that awful day of diagnosis and yes, it has been a whole new world since that day.
I've had the SAME exact feelings as you. One of those times though were I wish we didn't have that in common.
I just want you to know that I appreciate how well you put it all into words. You are wonderful Kim!
Hannah looks beautiful-with our without hair. She's a doll.
Hugs to you all,
The Larsons
Scott, Peggy, Caden and COLEMAN
cp: colemanscott

Anonymous said...

Liza, I certainly couldn't have put it more eloquently, I concur.
my love,
Anne Salice

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