Wednesday, August 6, 2008

There's No Place Like Home. There's No Place Like Home.

http://www.hemifoundation.org/

Exactly two months ago, Kristi and I were packing for the most dreaded trip of our lives. We were leaving for an unfamiliar city, in an unfamiliar state, to let doctors remove one-half of our precious little girl's brain.

We hadn't slept well in almost a year. We had been consumed by hospital stays, doctors visits, researching on the Internet, and trying to find anyone to talk to about Jessie's condition. Just days before we left, I sent one final email to the doctors at Cooks and Johns Hopkins to look at one more disease that I had found on the Internet. I knew that the symptoms didn't really fit, but I wanted to be the "knight in shining armor" that saved our daughter from such a terrible fate. I must have seemed so silly to the doctors. That's what dads do.

With all our options exhausted, we packed silently. If it wasn't for our faith in God, and for the wonderful community that we live in; If is wasn't for our family, and friends, and church, and school, and people that we didn't even know...if it wasn't for many of you reading this blog, we couldn't have boarded that plane on June 8th.

Imagine our surprise to wake up on the 8th to find a firetruck outside our house, ready to escort us to the airport! And to find our friends waiting outside our house and along the side of the road as we left town. It was like you all knew that we needed help getting to Baltimore, because we couldn't do it on our own.

At the time, only Kristi and I knew that Jessie's disease could only be confirmed by brain samples that would be removed during surgery. Only Kristi and I knew that Rasmussen's was a clinical diagnosis, and it could only be confirmed after the damage was done surgically., and it was too late to turn back.

Our burden was lifted by all of you at Jessie's Pink Day, and the Big Pink Send Off before school was out, and by Kristi's Birthday Surprise, and by the Cracker Barrel Carnival and by all of Jessie's Angels. We were carried through the hard times by well wishers and such caring people...most of whom we had never met.

Well, we made it to the airport and then to Johns Hopkins where Dr. Carson removed half of Jessie's brain. Dr. Vining told us a week later that the results from the lab were in, and Jessie did indeed have a very bad case of Rasmussen's Encephalitis. We had made the right decision.

So Jessie went on to Rehab at Kennedy Krieger Institute, and then to Cook Children's Hospital for more rehab, where you were all with us physically, on Skype, or in spirit. You all carried us through more tough times, while God carried ALL of us.

Now, I sit next to Jessie's bed as she sleeps. It is her last night in the hospital. She is going home tomorrow. She can walk, and talk, and laugh, and smile, and even tell jokes. She will walk out of Cooks Children's Hospital tomorrow with only half of a brain, but the same little girl that we left with 2 months ago. Praise God!

As I write this blog entry, there is another child in Baltimore who had a hemispherectomy today! His name is Chance, and he is in the Pediatric Intensive Care Unit right now. His surgery is complete, but his parents are sitting by his bead with fears that few will ever know. They made the decision to remove half of their child's brain in hopes that he will lead a more normal life.

The main difference between Chance and Jessie, is that Chance has a different kind of support. This morning, Chance's parents had a member of The Hemispherectomy Foundation waiting with them in the surgical waiting room. Jane, who is one of our Angels in Baltimore, sat with the family, and brought them food and was there to comfort them as they went through the most difficult day of their lives. She is there to serve them and help carry them, like all of you did for us.

Jessie has inspired so many people. She inspired a new foundation dedicated to children and their families who face Hemispherectomy Surgery. Only Jessie could take such a negative thing and inspire an organization that will help many kids and their families for an eternity, or at least until a cure can be found for these horrific diseases. She is the inspiration behind The Hemispherctomy Foundation. http://www.hemifoundation.org/ .

Many of you are now taking part in this foundation as well, and I look forward to watching Jessie grow and the foundation grow with her! I look forward to working with many of you in turning the organization into something that we can really be proud of.

I'll see many of you on August 16th at 6:00PM at Bearcat Park in Aledo. There are no thanks enough to express how Kristi and I feel. For those of you that I will never meet. Thank You too for your comments on this blog and for the cards and well wishes. They meant so much to our family.

I plan to keep writing the blog throughout Jessie's rehab, however, I don't think that it will compare to brain surgery....

God Bless You All, Jessie's Angels !!

Cris

24 comments:

Anonymous said...

I am so glad Jessie gets to go home tomorrow! I hope that all goes well. I am in baltimore and check back every so often to read how she has progressed and is doing.

Sophia Zeeler said...

OMG. That is so wonderful that Jessie is going home tomorrow. I read Jessie's blog everyday, she is truly an inspiration.

Sophia Zeeler
Millersville, MD

Anonymous said...

It is amazing news that Jessie is doing so well with her recovery and gets to go home today!! I am one of those people that will probably never get to meet you & your family, but I feel like I know you all so well. Thank you for sharing your family with all of us! Your blogs here have made my family cry, laugh, and spend more time together. They have renewed our spirit and proved to us that there is still good in the people of this world. You don't need to thank us....we should be thanking you! Our Prayers will continue for your family and Jessie...that you have all the support that you need, that Jessie will continue to recover and that the foundation will reach heights that were unexpected from everyone!

God Bless!
From Georgia

Malachi 3:3 says:

'He will sit as a refiner and purifier of silver.'

This verse puzzled some women in a Bible study. They wondered what this statement meant about the character and nature of God.

One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.

That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining Silver.

As she watched the silversmith, he held a piece of silver over the fire and let it heat up.

He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.

The woman thought about God holding us in such a hot spot; then she thought again about the verse that says:

'He sits as a refiner and purifier of silver.'

She asked the silversmith if it was true that he had to sit in front of the fire the entire time the silver was being refined.

The man answered that he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.

'How do you know when the silver is fully refined?'

He smiled and answered, 'Oh, that's easy -- when I see my image in it.'

If you are feeling the heat of the fire today, remember that God has his eye on you and will keep watching you until He sees His image in you.

LeeAnn Horn said...

Praise God, Praise God, Praise God! He has blessed Jessie with terrific parents, terrific brothers, and a wonderful community of support. I am so thankful she is doing so well. Today is a day of joy and answered prayers. Rejoice in this day that God had given you. Much love and prayers follow you home!
LeeAnn Horn
Richardson, TX

Anonymous said...

That is awesome news!! How exciting! I continue to pray that God puts a hedge around Jessie and your family to protect you and keep you safe. I look forward to reading how well Jessie is doing at home.
From Grapevine
Joyce G

Anonymous said...

I am so glad Jessie will be going home tomorrow! There is just nothing as comforting as sleeping in your own bed. Thank you so much for sharing your journey with us, and I will continue to check your blog often. GO JESSIE!

Anonymous said...

What an amazing little girl!! She is a perfect example of- God never gives you more than you can handle!! She has also given me a new way to look at a situation I have been facing with my daughters for 10 years. She has given me strength and faith, like no one has been able to. Now I understand what my husband has been trying to tell me for years. That God has a plan, we may not understand it now, but as long as we have faith, when He is ready, we will see the whole picture, but until that time, we have to keep the faith in Him. I never fully understood that until I got so involved in Jessie's life. Watching your family stick together and pull through such a frightening time, and all you had was faith, no promises. Now I watch you with your family and friends and know, we too, can make it. And just like our life, there was a reason for Jessie to go through this. I am sure you didnt see it in the beginning, but you, and everyone else that knows anything about the foundation, now knows why God picked her. Please take a minute to tell Jessie, from the bottom of my heart, I thank her!!! She has made such a difference in my life. Good luck at home, enjoy your family and once again, THANK YOU!!

Love from Texas
The Campbells

Anonymous said...

WOW...what a true inspiration little Miss Jessie and her family have been to all of us in Aledo and around the world.
Over the last couple of months I have bonded with your family, as have many others, thru this website...I've laughed and cried and smiled. Thank you for that!

My daughter, Megan, is a Child Life Volunteer at Cook's Childrens. She was hoping to be able to meet Jessie while she was there, but never got the chance. She did say however that she saw her from a distance while she was with another patient in the play room. She came home that night in such "AWWWW" over how much progress Jessie had made. She said.."Mom...she's the same child she was when she left 2 months ago...it's as if nothing ever happened...she's just a happy, happy child!" What a blessing!

I know you will enjoy your time AT HOME and we'll continue to catch up with you all on this site! Hope to meet you next Saturday!!!

Terri Sherman
Aledo, TX

Dog snob said...

Wow!! I'm so excited for all of you. You have one amazing little girl there.

Hillengrandma said...

I, too,am so grateful that Jessie is going home to sleep in her own bed. It has been my privilege to be able to read about your remarkable daughter on your blog. You have done an amazing job with your writing on this blog and keeping us all posted as to Jessie's progress. GOD IS SO GOOD!!
As a mother, myself, it is so very hard to imagine all that you and your wife have gone through. I know that it is only through the strength the Lord gave to you that you are able to do it. It just blows my mind that Drs. can remove half of a child's brain, and she can continue on with her life. She is a beautiful little girl and I am so thankful that she is doing well. I have followed your blog since she first had surgery, and I have prayed for her and for you and your wife many, many times. Jessie, and your family have all been an inspiration to me. May God continue to bless you.

Anonymous said...

Congrats to Jessie!!! I have been following this blog since it aired on wjz.com. I moved to Huntsville, AL from the Baltimore area almost 2 years ago and I still keep tabs on the Baltimore news. Once I read the whole blog I was checking everyday to read about Jessie's progress, but I quickly became captivated by Cris' commentary. I love how you have opened up about every aspect of this journey and the reader is able to feel everything you feel. I have a 2.5 yr old daughter and I cannot imagine going through something like this. You provide such insight and hope to others. I just want you to know that I am elated at Jessie's progress and I will be continuing to check in on her (and you) as she progresses.

Julie -- Huntsville, AL

Anonymous said...

Oh Jessie, How good it will be to have you back in the neighborhood!! I am so so blessed to have your journey show me that God will always be there. No matter what your struggle is, you need only ask for God to have his way and he will protect you and care for you. I have watched for months, how to put one foot in front of the other and fight on!!. Jessie you are a blessed "young woman" as i am sure you are more mature than a few "adults" i know, to have your family right there every minute, it overwhelms me. Cris and Kristi, you are my shining example of parents of the decade. As one year will not do. Matt, Josh, & Jake, i dont envy the boys that come to see Jessie in the years to come, to get past you 3 will take a lot. WELCOME HOME JESSIE!!!!!!!

Biatriz said...

I am so very happy for the entire family. I have to say, I was amazed at how well Jessie is doing as she walked out of Cook's today. What a blessing! I may not always get the chance to read this blog daily but I include Jessie and your family in my daily prayers.

hugs from Fort Worth
Biatriz

Anonymous said...

OFFICIALLY....WELCOME HOME JESSIE!!
We are so happy to have you back home in Aledo. Can 't wait to meet you on Saturday!

Chance's mom said...

Yeah Jessie!! You have truly been an inspiration to me. I am sitting here tonight updating Chance's blog about the day that he had and you give me so much hope for his future. I can't even begin to let you know how much you and your family have helped me to prepare for this journey that we started and we have never even met you. Thank you to your mom and dad for sharing your story. Congratulations on getting to go home. Keep on trucking girl!!

Holly King said...

Good Nite Hall Family.
Sweet Dreams.
Your Home.
Love,
The King Family
Todd, Holly, Gage, Gillian, Greyson & Georgie

Vicky Luttrell-Baltimore said...

YEAH JESSIE!!!!
WJZ (the news station in Baltimore) showed a clip of you last night, walking out of the hospital and up the sidewalk to your house! I am so happy that you are FINALLY home. God Bless you and your family.

Anonymous said...

Jessie your dad said it all There's No Place Like Home. I'm so happy for you and your family.I want to thank all of you so much for sharing your lives with all of us. You have changed my life in so many ways. Jessie you are amazing!! Fran. Baltimore,Md

darwiniacat said...

Please keep writing and showing pictures of Jessie's rehab. It is amazing to see all the new things that she is doing on her own. The brain surgery was only the first step of her recovering from RE.

I, for one, will keep reading eagerly. Jessie, and your entire family, are an inspiration for me.

JoAnn said...

I am so glad that Jessie is going home!! I check your blog everyday and I am glad to hear that you will continue to keep us updated. Jessie is a true inspiration. Thank you again for sharing all of this with us. Have fun at home and at your big welcome home party. Love Always from Baltimore

JoAnn
Edgewood, MD

Jan Tisdale said...

Thanks for sharing your story. Often people ask, "how do you do it or I could never cope if this happened to my child". The answer we give is, "you do it because you have no choice, you do it to save your childs life, each day is a new day and you live one day at a time with God leading you each day and being beside you." May God give you the strength for today.

Kate said...

YEAH!!! I am so happy Jessie is home! That is so exciting!! Way to go girl! Wish I could be there for the big party- too bad Utah is so far away. Thanks for the inspiration. I know the Lord hears our prayers!

Gina Toothe said...

Congratulations to Jessie, and to the Hall family on going home!!! You did it!!! Thank you for sharing your story of your miracle girl. It is so heartwarming, and has truly touched my life. Jessie, you are an inspiration to all. You teach us to be strong and brave,and to never forget how very precious life is, and pinkalicious to!!! When I see pink, I think of you! Keep working hard in therapy. And keep doing an awesome job at getting better. God bless you all. Always remember that, "Angels walk beside us across the Stepping-stones of life."

Gina Toothe
Baltimore, MD

Jackie Schutza said...

Welcome Home Jessie! I can't even begin to imagine the excitement you must have about coming home. It makes me realize how important "home" really is. I pray that you will all be able to sleep better, work harder and play more.
Being home is bopund to help with Jessie's recovery. She is one AMAZING child of God!! I look forward to the day when Jessie
returns to NRF and Kid Zone. We all miss her! Thank you for sharing your family with all of us. You are an inspiration!
Blessings!
Jackie Schutza