Saturday, June 24, 2006

Tomorrow

Author's note: I am hesitant to publish this, knowing that people we care about are going to learn some not-so-good news on a web site as opposed to a phone call. However, with such a large supportive community, this is the only way we can inform them all. Telling the story over and over is hard. So please forgive me now.

You know when those moments happen that change your life forever? Where you are one person one second, then before you can even finish a breath you are someone else entirely?

This happened to me when Vampbaby was born. With Vampmommy passed out from the drama of delivery, I made my way to the nursery and said to the nurse at the door, "I'm here to see my son." At that moment, I felt the sutble shift from suddenly being a young thirtysomething to being someone's dad.

The next moment came yesterday, when I spoke the following words to a someone at the house we've been staying in while Vampbaby was in the hospital.

"My son has cancer."

Yes, I am now the father of a child with cancer. In our "talk with he doctors" yesterday, Vampbaby was diagnosed with an incrediby rare and incredibly nasty form of cancer. Only 200 children have been diagnosed with this tumor since 1985. I won't get into the scientific details here, only because what we have been told is that existing literature and information available on-line regarding this cancer is completely inaccurate.

What I will say is that there is one form of treatment that has been discovered that has shown success in the few kids that have been diagnosed over the past few years -- and the doctor leading the treatment is out of Boston. So, close to home is the one man that can work to ensure that I have a son to blog about in a year.

We are home now, and our son is enjoying a day surrounded by family and friends, walking and talking (and throwing the occasional temper tantrum) as normal. The team in Boston will be processing the data from Declan's surgery early next week, and later in the week we will meet with them to begin the process of treatment . . . Which will take a year.

The optimism and sense of closure we felt with the success of his surgery has quickly faded. We are deep into some dark territory, and the enemy before us is about to make the next year of our lives a nightmare. But we are comforted by the love and support shown by people who have tuned in here, and we will continue to use this space to update everyone on Vampbaby's (and our) journey. I hope as well to continue to use this space to muse about parenting, even though my parenting is about to take a very difficult, trying and scary turn.

43 comments:

Anonymous said...

Mel/Tim/Declan:

My thoughts and prayers are with all of you during this time. I will keep you in my thoughts and prayers. If there is anything you need for me to do, please don't hesitate to ask. Stay strong and positive. Your Neighbor....Cheryl

CountryChick said...

Stay strong you guys...everyone is supporting you through and through. You are very loved little guy, and even though this is a rare cancer, you have the doctors to treat you in your backyard! We are rooting for you!
If you need anything guys...just let us know!! We are here to support you!
Always,
Miss Beth

Anonymous said...

Dorothea (Your aunt Dot, My girlfriend sent me to your site. I have prayed for your son, will continue to pray for him and I shall pray for your family. Thank you for sharing your story!
Mary Gail

Anonymous said...

Tym, Mel and Declan,
Our hearts are filled with concern, love, and hope in finding the right cure for Declan. It's a blessing that the doctor is so close to you. Even though we are far away, please know that you all are in our thoughts and prayers throughout the days. All of our love, Uncle Jim, Brenda and the kids

Anonymous said...

It is hard to know what to say! We are all so lucky that you are so close to Boston where Declan can fight this thing with Mommy & Daddy right by his side. We are so sorry that you have to go through this, but all three of you are strong... stay positive. Lots of Love, Positive Thoughts and Many Kisses from Anna,John & Family

Heather said...

Dear Declan, Tym and Mel:

What I wish to say has already been said and, frankly, no words can really speak to what you are going through and what you have already endured. While the true nature of your grief, fear and sorrow and the true nature of my love for you all are ineffable, please know that in this complex silence, hope and care remain and will throughout this great challenge. When calls would be helpful, please let us know.

Anonymous said...

Menomonee Falls Wisconsin just got back from a camping trip and got the news. We are all thinking of you - parents and child as well as other relatives. We'll keep checking the blog, but if we can do anything to help please let us know.

Anonymous said...

Tym,
I am so sorry to hear about this latest discovery. Several of my family members have had and beaten cancer, but i know that when you first hear it it is incredibly scary, and you feel so helpless. Know that it can be conquered. My aunt currently has one of the most deadly forms of lung cancer but is going into remission. So love, prayer, and good healthcare can make a huge difference. I send you love and light, and Declan is in my thoughts and prayers.
with love,
heather a~*

Anonymous said...

Tym, Mel & Declan,

We're here praying for you and sending many positive thoughts your way. Let us know if you need a place to stay when you're in Beantown or a friendly face to bring in a cup of coffee. Stay strong.
Love, Cathi, Joe & Casey

Anonymous said...

Mel, Tym & Declan:
I am so very sorry to hear about Declan. So little, so innocent, so unfair! You are all in my thoughts and prayers and will continue to be through the difficult times ahead. So many are rooting for you little guy. Stay strong!!
Love,
Pammie

Jackie's Mom & Dad said...

What does one say at a moment like this? We are so sorry to hear this news. You will continue to be in our thoughts and prayers as you embark on the journey ahead. As you stay focused on Declan’s treatment and healing please let us know how we can help you with everyday tasks. If you are accepting visitors we would love to bring Jackie by.

Anonymous said...

Mel/Tym/Declan


I am sorry for not writing sooner, I just found all this out today. You all are in our hearts and thought.


Ryan Berg and Family from Grand Forks

Anonymous said...

My thoughts and prayers are with you all. I just found out from Barbara and Jeremy what is going on. Barbara's mom, Karen

Anonymous said...

Declan, Tym, and Mel,

We are sending to you three giant hugs for three strong people. Our hearts, minds, and souls are filled with positive thoughts and loving prayers for you all. We love you.

Chrissy and Jay

Anonymous said...

Mel/Tim/Declan:
What can be said that has not been said. I love you all, and my heart goes out to you. I guess what we must depend on in our darkest hours, is that given faith tomorrow will be better, or we will have answers, or understanding. You must be strong for Declan, and those who love you must be strong for you. You are much loved. It goes without saying that my thoughts, and prayers and hugs, are there for you.
Love Dana

Anonymous said...

My dear Tym -

Anonymous said...

Declan, Mel, & Tym,

I read this last entry, and since then I have been speechless. All I can say is never lose hope. There’s medicine & miracles, you guys are extremely strong, you have so many people that love and support you, and that little boy of yours is one of the strongest-willed babies I have ever met. Not only does he want one tulip from the ceiling he wants two, and he doesn’t care if someone else is holding it- he'll get it. You are in everyone's thoughts and prayers, and as always, if you need anything at all don't hesitate to ask.
Love, Miss Jessie

Cullity Insurance said...

Tym and family,
I received this link through the Leadership grapevine, and just wanted to extend my thoughts and prayers to you during this trying time.
Best,
Mike Cullity

Anonymous said...

Dear Declan, Mel, and Tym- We are sending you lots of love and saying our prayers. Please call on us - we are here for you...

Love,

Lee Anne, Andy, and Ruby

Compmom said...

Dear Mel, Tym & Declan:

I did not realize the seriousness of the cancer Declan has until Dad told me yesterday. We are so sorry!!! If there is anything we can do besides pray, please let us know.
All our love, Aunt Pauline & Uncle Ray

MetroDad said...

I'm so sorry to hear the bad news about Declan. My thoughts and prayers are with you and your family.

Anonymous said...

Declan,Tym,Mel:
Our thoughts and prayers are with you in this trying time. I know we dont get to talk much and we are so far away but know if there is anything we can do we are a click away!! Stay strong!!...your cousin Kristina Reynolds and Family

Anonymous said...

Tym, we are still sending our thoughts and prayers to all of you. Stay strong and know that we are with you through this journey.
Ann and staff at DPHS

Your friends at Harmony said...

Tym, Mel and Declan...
Prayers are everflowing your way... keep the faith!

love,
Donna, Amy and your Harmony Family!

Anonymous said...

Mel, Tym and Declan,
I wish I had some amazing inspirational words right now. All I can say is that you are a strong family, Declan is a strong boy...you'll find strength in each other to get you through. Please call if we can do anything.
Love,
Heather, Todd and Charlotte

Anonymous said...

Dear Tym and Mel,

For two days I have tried to find the words. There just are none to express the depth sadness at the news of Declan's test results. Such a struggle for such a little man. The two of you will be his strength and Declan will be yours. If there is anything we can do, please do not hesitate to call. We are just minutes away and the girls make great house sitters if you need to be away. Much love Patti, Chuck, Meagan and Laura

Anonymous said...

Tym, Mel and Declan,

All of you will be foremost in my thoughts and prayers. Many will be with you on your road to recovery. Thank you for sharing your stories..your courage and spirit are admirable. Be well. Ray Goodman

Ellen@MiraclesCanHappen said...

We just heard about your dear child over here in NH Alcohol & Drug Treatment. Love and prayers to your family, as you get through this difficult time.Ellen Lahey

Anonymous said...

Dear Tym and family,
A message of hope, our son is a 19 year survivor (rhabdomayosarcoma at age 2 1/2). He is now a junior at Northeastern University. The road map for the journey ahead is not clear, but you and your family and friends will find strentgh you never thought could be possible. Thoughts and prayers, Rosemary Shannon, AODTS

Anonymous said...

When I first heard Declan was sick I was angry. I was pretty sure that was an inappropriate response from me so I waited.

I heard he was in surgery and I was really scared. I was pretty sure that was an inappropriate response from me so I waited.

I heard the news today and I am feeling all sorts of really, really inapproprite things but I can't wait for an appropriate response. I just want you to know that I am doing my best to send the very best out into the universe for you guys.

The one appropriate thing I can say is....you are in my heart.

Kathryn

Raiya Corsiglia said...

Tym and Mel,

I'm speechless. Boy, this kind of thing sure test you. But, I have a good feeling it's goind to be OK. The best doctor for this kind of thing is right next door to you and I am sure you are surrounded by people who love you and that energy is not for nothing.

Recently a friend of mine told me about this study the Japanese were doing in different parts of the world. It's complicated and hard to discribe, but the idea behind it was, there were these meters that were put all over the world to measure human energy waves. The ONLY time these energy wave meters moved was when there was a crisis all over the world, like a giant earthquake or New Orleans,etc. But, here's the kicker, the meters moved BEFORE the catastrophic event happened. Somehow, everyone on the planet knew unconsciously that something was about to happen.

Conversely, I feel the same can happen when lots of people have positive and healing energy toward one person, one family. The energy around Declan can be affected by those that love you both and him. He is not alone. He has us. Although some of us may be far away, there is no distance between good thoughts and energy and those that it goes to.

My love and thoughts with you three.
Raiya

Anonymous said...

Everyone is with you guys during this time. Dont be afraid to ask for help. Thoughts are with you guys everyday.

Kyle

Anonymous said...

Dear Mel/Tym/Declan:

There are no words to tell you how we feel. Even though we've been parents over 30 years, we don't know if this is something we could handle. You and Mel are certaintly pointed in the right direction... Our love, prayers, and good thoughts are with you always.

Uncle Jim and Aunt Nancy xoxoxo

Anonymous said...

Tym, Mel and Baby Declan,

Just to let you know that we are sending our love and prayers to you during all of this. Remember that you are never alone and that you have an entire extended family to draw hope, help, and strength from. If there is anything that we can do, please don't hesitate to call.

All our best,
Jamie, Sara and Chloe
(413)225-3023

Anonymous said...

Tim/Mel/Declan:

You are in my thoughts and prayers. Pete

Brenda Martin said...

Mel,Tym,Declan Nothing can prepare a parent to go through what you have, and will go through over the next year. But I will tell you Declan is such a lucky boy to have two of the greatest, kindest, loving,intelligent parents around. I am sending lots of prayers your way. Reading your blog you said "what is normal" I heard someone say after going through cancer that it was there "new normal" I thought that was interesting. I will be thinking about you, and give Declan a big kiss for me, BRENDA

Jackie said...

There are no words to express what I am feeling right now - only to say that this is the most I have prayed in years. Declan is lucky to have the two of you to bring him through this journey. He couldn't have better parents or more love surrounding him.

All my love . . . .

loueez@verizon.net said...

Dear Mel,Tym, & baby Declan;
We got the sad news and we are at a loss for words...we are holding you all in our thoughts and prayers you can be sure.
Our hearts break for all of you and we pray that God will give you the needed strength and hope as you go through this hard road.
May our love and prayers bring some comfort to all of you...
Richard & Louise(your aunt Pauline's friends)

loueez@verizon.net said...

Dear Mel,Tym, & baby Declan;
We got the sad news and we are at a loss for words...we are holding you all in our thoughts and prayers you can be sure.
Our hearts break for all of you and we pray that God will give you the needed strength and hope as you go through this hard road.
May our love and prayers bring some comfort to all of you...
Richard & Louise(your aunt Pauline's friends)

Anonymous said...

Dear Declan, Mel & Tym,

As we drive Anna to Harmony every morning, we think of Declan and his contagious little laugh - how could someone so small have such a big laugh?! We can't wait to hear that wonderful giggle echoing through the hallways again...and we are confident it will be very soon.

Please let us know when (and if) Declan would like some visitors. We would love to come see all of you any time. And, I'm sure that Declan could use a little bit of teasing from that sneaky Anna - it will help keep him on his toes :-)

And, please let us know if we can help with anything - dog sitting, plant watering, cooking, anything at all. Don't hesitate to ask. You can get our phone number from the team at Harmony.

We miss you all. You are in our thoughts and prayers every day.

Love,
The Kozikowski Family (Todd, Laura and Anna)

Uncle Craig said...

The future is undiscovered.

Let us discover it together.

The strong can afford to be gentle. Because they are gentle, many people are willing to help them. And the goodwill of those who love them makes them even stronger. Thus they are able to prosper amidst adversity.

Live well.

Sincerely,
Uncle Craig

Anonymous said...

Tym,
Even Deliliah wouldn't know the right words to use for this one... I read the blog and one of the things that struck me was the word "rare". You used it to describe the form of cancer- I use it when I think of you and yours. Rare folks, rare energy, rare love. Faith is sometimes hard to find when it seems so dark. Know that you have lots of people around you who are willing to lend you theirs when you feel like you misplaced yours. You are all in my thoughts and prayers.
Eileen

Anonymous said...

Tym, Mel & Declan,

The three of you have been in my thoughts and prayers these past few days. Tym & Mel, you have spent countless hours helping families in need, please let others help you as you nurse Declan on the road to recovery. We are all here for you! Maria