Tuesday, April 25, 2006

Rare Texts: Thomas's Dad Speaks

Before you read all of this, you should know a few things. One, there is a reason my wife does most of the writing. Two, I'm sentimental, a romantic so I may sound a little sappy and even sad. Three, the reason I mention the previous statement is because if you are also sentimental, romantic, sad or even sappy you may not want to read this at work. (Some people have asked for a warning) Last, no matter what I say in this entry be assured that I am so happy that we have Thomas and that I can't express the amount love we have felt from our friends and family. There are good moments, but there are a lot of hard things, too, and I'm going to vent a little.

This is the first and last time that I will write this much on the site, but I just wanted to voice a few things that people have asked about, things that I've been thinking about and little about how this has affected our lives.

Three days after my wife's birthday, was the day we found out about Thomas' tumor. I was out of the Mad Science office with one of my coworkers when Sarah called sounding very urgent, "I'm on my way to the emergency room, The doctor's not sure but he thinks Thomas might have meningitis."

I was driving and started to freak out. I put my emergency lights on and drove about 95 the whole way to Dallas. Those hours we were in the emergency room seemed like days and every bit of news that came made it worse.

I'm better with dealing with the hospital staff now, but that first night in the ER a nurse was trying to draw blood and stuck Thomas with a needle seven times. I've never felt so protective and angry in my life.

The first news that Thomas had a tumor came late that afternoon. Though, in my mind I thought, "Surely little Thomas = little tumor."

That day was rough. The next day was the hardest day of my life. Just writing about it makes my head hurt and my eyes swell. I'll skip all the gory details.

These are the things I remember:
The MRI:

  • The doctor telling us, "Thomas will need a breathing tube."
  • Dropping Thomas off at the big magnetic room and the nurse saying, "You can't stay here."
  • The nipple ring joke. "Does he have any piercing?"
  • Sitting in a dimly lit room and staring at the inside of my son's head. Watching a slide show of the devastation that has taken over...
  • Watching the doctor point at the real life size picture of this tumor that was the size of a racket ball in his little head. Little Thomas = Big Tumor
  • Going into a small office and crying so hard like I did when I was 5 years old.
  • Holding my wife and feeling completely helpless.

The Surgery:

  • Listening to the anesthesiologist talk about how they normally will stabilize the head of an adult for this type of surgery by clamping their head to the table. Since Thomas' head is so soft it will take about an hour of placing pillows, blankets, straps and whatever else to get him into just the right position so they can do the surgery. In my head I thought, "He's too small, he's too young."
  • The doctor encouragingly saying, "I think we were able to get it all."
  • Thinking that the worst was over because the Tumor was gone.

Recovery and Treatment:

  • The day of the surgery I went home for some clothes and to rest a little. I remember bringing the stroller up to the room while we were waiting. I never thought that a stroller would represent as much as it did that day.
  • Malignant isn't a word I ever thought I would hear about my 6 month old son.
  • Taking turns holding his hand and stroking his red hair.
  • On the third day of recover I remember a feeling ecstatic when Sarah and I were asked, "Would you like to hold him?"
  • Packing up and leaving the Mad Science office for the last time. (I loved that job, Thanks Sapna, Sahar & Lam)
  • After finding out that we couldn't get any sort of financial aid Sarah asking one of the case workers, "So what do people do when they can't pay." She replied nonchalantly, "Well some people get divorced so they can claim the families income differently."
  • After a discussion with the doctors about cancer treatment I had a few thoughts.
  1. "The tumor is completely gone. Great!!!
  2. But it will come back if not treated with radiation therapy. Crap!!!
  3. Nerve damage in babies this age, can be healed much more easily. Awesome!!!
  4. But Thomas can't swallow or use his vocal cords. Crap!!!
  5. We are going to wait for radiation therapy until he is a year old. We want to give his brain time to develop. Great, good idea!
  6. In the mean time we are going to give him shots of poison on a weekly basis. Bad idea!!!
  • I understood the doctor was just doing his job (and a great job at that) but after that discussion of my son's future, it would be difficult to describe the mixture of sadness and anger and resentment I felt.
  • Later, though, I was sitting with one of my best friends who came in from out of town. He was there when the doctor discussed the pros and cons of a feeding tube through Thomas' nose or a direct port through his skin and into his belly. After listening to this conversation he empathetically said, "I don't think people understand that this is an ongoing problem. You don't really ever get away from the stress."
    For me it was nice to hear that someone really did understand that every day is another gift, but it's also another; feeding tube to be changed, diaper to be changed while wearing protective gloves, trach tube to be stuck into my babies throat, more chemically enhanced vomit all over Thomas face, etc...

I'm Thankful For:

  • My wife who takes care of Thomas and me no matter how many chores she's done or how much sleep she's had.
  • The nurses, even that one I got so mad at in the ER. The doctors who removed my son's tumor. The staff who takes care of us every time we go to the hospital.
  • Our friends and family who have brought us dinner, raised money, been there for whatever we needed.
  • Everyone who has donated in support of Thomas.
  • Days when Thomas goes the whole day without throwing up.
  • Thomas' new teeth and a little mouth that is exploring the crib railing as I write this.

Thomas has survived so much and I don't know how we could have gotten this far without the support of so many people. Thank you for your time, continuous financial support and love.

Read more!


At 5:19 PM, Blogger Trish McManus said...


This is very touching. I did have to get my Klennex out. I am so amazed at the strength and love you continue to show Thomas daily. I pray for you, Sarah and Thomas every day and I am thankful for the blessing that you have each other and that we have all of you in our lives.

I love you all.

Trish (Nana)

At 7:30 PM, Blogger Ronee said...

Scott, as I read what you said, my heart just sank as tears run down my face. I realize, as your Mom I can't hold your hand and make it all better or put a superman bandaid on it. While you get upset and just want to sceam. We all feel the same way. I hurt when you hurt. I cry when you cry. I thank God for Thomas. Some how we alway make it through everything put before us in life.Scott you have alway been a blessing on my life. I love you all. MOM

At 7:40 PM, Blogger Ronee said...

Scott, As I read what you put on the blog my heart just sank. I have to remember that I no longer can make things all better for you. Can't even put a superman bandaid on your heart. My heart breaks with yours. I cry out as you do and I want to scream out, why? Thomas is our blessing, just as you are always a blessing to me. I love ya'll MOM

At 12:16 AM, Blogger Rhonda said...

thank you for being you.
thank you for making laughter
thank you for being protective
thank you for showing your sensitive side
thank you for the heart you have and strength you continue to show through all of this,
i can not even begin to imagine what it is like, i will never understand how you both are feeling right now. but i hope that you know how much i love you both and how much thomas means to me. im just sorry i dont have more to offer but my heart for you.
I am blessed to have you as the father of my nephew, the husband to my sister, and as my brother.

At 6:01 AM, Anonymous Krista said...

I don't remember how I found your site, but I do remember seeing sweet Thomas' face looking back at me when the site loaded. I've been checking for updates daily and praying for you daily as well. Just wanted to let you know you have another cyberfriend, cancer warrior, whatever you want to call it...on your side.


At 7:30 AM, Blogger The Monkey Attack Victim said...

I was hesitant to read this at work because when I saw that Scott was writing it, I knew it was going to break my heart. But it wasn't too bad. Thank you so much for sharing what was in your heart. We get updates from Sarah, but it is good to know where your head is, too. I love all of you so much and would give anything to make it all better. Let me know if you need anything.

At 11:33 AM, Blogger Wedding Girl said...

oh, man, scott...that WAS a tearjerker...

but it's so great to hear it from your experience of all this...

still praying, rox

At 12:16 PM, Blogger Paula said...

scott, Sarah, Thomas,
I heard about Thomas from a friend and I am touched by the story. I check the page daily for updates and new photos. I feel close to you even though I am a stranger praying for you and your precious baby.Through the tears I write this to you: If HE brings you to it; HE will bring you through it.I will continue to pray for you. Keep up the faith.

At 2:03 PM, Blogger Lady of Shalott said...

Scott and Sarah;
God is wonderful and mysterious. For some reason known only to Him, He has laid you and your sweet baby on my heart. I read your blog, pray for you daily, shed tears and laugh out loud whenever I read about Thomas' new adventures. Please let me know if there's anything that I can do to help you. No task is too menial or insignificant. Trish knows how to reach me.

Love and prayers,
Debra Lambert

At 6:53 PM, Blogger Kellee said...

Even though it's simple, it says it all...we love you!

At 3:20 PM, Anonymous Anonymous said...

Thank you for sharing your heart Scott. Although I love reading Sarah's words, it is nice to read your perspective. I hear your voice (and your brother's voice!) as I read it.

Andi W.

At 9:58 PM, Blogger sarah's_mom said...

Ook, so here I am in Michigan with my mom and my sister, and I read your words. Once again, my heart just breaks and the tears flow. I will never, ever, forget the sound of Sarah's voice that afternoon she was sent to Children's. "Um, Mom, can you come?" Never will I forget the look of fear and devastation in your eyes when you and Sarah came back to Thomas's room after THE meeting that showed the full extent of what was ahead. Never will I forget the way you took Thomas from my arms and just held him so tightly. But Scott, what I also will never forget - even many years from now - is what I see now. I see a father caring for his son, and his wife, in the most selfless, kind and loving way. I see a man who has stepped up completely, embracing the "for better or worse" in the truest form. I see a man who in spite of his own fears and insecurities still can be the rock my daughter needs to help her get thru each day too. I knew the first time I met you that you were the one for my Sarah --now I know why. Thank you. My heart and prayers are with the three of you every single day. much much much love.

At 9:55 AM, Blogger sandylandy said...

I just love you all so much. If I can do anything, call me.



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