Wednesday, April 30, 2008

Pampered Chef Link Fixed...

Sorry. My Pampered Chef link in the previous post wasn't wanting to work. I've fixed it now. Here it is again:


Thursday, April 24, 2008

Like I need an excuse...*eye roll* =)

You are cordially invited to a
Pampered Chef Online
FUNdraiser Show

Help Kathy Straughn raise money to
benefit the Pediatric Brain Tumor Foundation

Order Now – May 31st
(orders will be shipped when the fundraiser closes at the end of May)
Browse and shop on-line at:


Click on Order Products (bottom left)
2. Type in Pediatric Brain Tumor Foundation Under Option 1 as the Organization name.

3. Please choose Ship to Host if you are local to Kathy Straughn in Ashland, VA or Direct Shipping if you are not.


All products in our catalog are available through the Pediatric Brain Tumor Foundation Fundraiser

You can also take advantage of the May Guest Special. May is Help Whip Cancer Month at The Pampered Chef. You can purchase the following limited time only pink products and $1 from each of these products purchased will be donated to the American Cancer Society: Pink Mini Scoop & Measure for $5, Pink Kitchen Gloves for $10 or Pink Kitchen Brush for $6. Check them out as you browse online.

-20% of all sales will benefit the Pediatric Brain Tumor Foundation.

-An additional $3 will be donated for bookings.

Christina Heath, Independent Director


This has been a hard week. Hadley and my cousin Stevie shared so many anniversaries. So, this wasn't just me dreading 4 years of battling a tumor and the anniversary of Hadley's first surgery. April 19th of last year Stevie's body failed and she had to leave it behind. In case there are any of you out there that I haven't talked to about my cousin Stevie-she fought a brain tumor for 5 years although, like Hadley, she was battling it long before it was discovered. They had a long road to diagnosis as well. She was 19 when she died last year. Her birthday is the same week as Hadley's too. Stevie was never defined by her tumor. She was so much bigger than that. I don't know if she ever knew it, and it would never justify all the pain she endured...but, she used it to see even more beauty. She and her mom ministered to families in the hospital by delivering hospital room friendly and non perishable snacks/meals. She saw absolute perfection in children the rest of the world saw/see as broken. MY world was a better place because of Stevie. I used to love to watch Hadley sit and whisper to Stevie. There would be kids and people running, talking, laughing all around them and Stevie would take the time and have the patience to truly listen to what Hadley was trying to communicate. I honestly believe that even if Hadley didn't have a single word in her vocabulary Stevie would have understood her. It was amazing to me that Hadley always knew to go and talk to Stevie. She could listen and really hear. I would venture to say that part of it was the simple fact that they shared the frustration of not being heard...for different reasons...but the same end result. It meant so much to my mommy heart to know that there was someone other than me who was willing to take the time to REALLY hear Hadley.

I SO wish I had taken the time to REALLY hear Stevie. I know I missed out on a lot...and wish I could have given her the chance to be truly heard by one more person. =(

Despite the fact that this has been a crazy hard week I feel good. I am thankful for every day. I am sad. I ma scared. But, I am refusing to let that control me. I am really trying to take charge of my life and make it what I want it to be. It would be easier to just wallow and complain...but, we all deserve more than that. I feel obligated to honor life and live the best I can. I challenge you to do the same.

With Love and HOPE-

The Fight...

The first surgery was on 4/27/04. It was a craniotomy to debulk the tumor...or what they call a resection. Until we met with the neurosurgeon (the evening before surgery) we had hope that they would be able to completely remove it. In all cases that is the best case scenario. The neurosurgeon told us he knew that wasn't possible in Hadley's case. Mostly because of tumor location. He was able to get out about 90% though. That last 10 percent was and still is considered inoperable. The tumor margins were not well defined. Meaning that the tumor had not just grown in a benign fashion and caused damage simply by taking up room in the skull. It had actually invaded healthy tissue grown around and attached to arteries, vessels, nerves, glands etc. One knick could make her blind, destroy hormone function or kill her almost instantly. We were lucky. The biggest amount of damage from surgery and the tumor was to the cortico-spinal tract and motor strip...and the frontal lobe. Neither of these immediately threatened her life. She did sustain a knock to the artery that feeds blood to the front of her brain. The first night was very touch and go. The one and only time I've seen our surgeon lose his cool was when he came to check on Hadley in ICU a few hours after surgery. She was quite agitated and her blood pressure was out of control high. He reamed the ICU attending right in front of me. Hadley was in huge danger of a bleed without the high BP, because of the knick,this made it miraculous that she didn't sustain bleed and, best case scenario, have to go back in to surgery. She was in ICU for several days. We brought her home the first week of May looking like a prize fighter (her eye had to be taken out of the socket to get at the optic chiasm and put back) unable to walk and incontenent. She had so much swelling that it took a while for her eye to actually go back into the socket. The hardest part was that she didn't have the expressive language skills to communicate pain etc. We were released with 18 medications. Just a few weeks earlier we had no reason to believe she wasn't perfectly healthy.

30 days after surgery the residual tumor had more than tripled in size. She had to start chemo immdiately. We started with a clinical trial that failed quickly. It was a cocktail of 4 chemos that were really hard on her. She had 2 different central lines placed (short surgery). We spent a lot of time at and in the hospital. I honestly have no idea how I got through it. Keegan was 2...Liam was now 6 months old.

On 10-13-04, just 6 months later we were told that her only shot at beating the tumor was another debulking. This time was harder...we knew more and were a lot more scared to send her. Our amazing surgeon got a little more out than he did in the original surgery and Angela K and I literally squealed and jumped when we saw the scan in his office. The original tumor was the size of a large orange or small grapefruit. Yes, in a 3 year old's skull. The tumor was now a little bigger than a grape. On the scan it appeared that someone had dipped a pencil eraser in white out and dabbed it on the MRI. We were ecstatic. But, we had to start chemo again right away. A month later a port was placed in Hadley's chest and we began a new chemo regimen. This, too, failed.

We went through 4 failures before we started her latest regimen and a finally stable tumor. Our scan in Feb would have been our one year stable out of treatment. Now there are 5 tumors. And no possibility of completely removing any of them.

Did these awful surgeries do any good? Yes...they bought us time to TRY and beat this thing. Had we not done them and not gotten the opportunity to battle like we did I may never have been able to forgive myself for not exhausting our options. Would I consent to another surgery? No. Not without a promise of miraculous and total healing. Would I change the way we've done things? No. I honestly think we've done our best. My one regret is how late we found the tumor. I wish we had found it so much sooner...but who knows if the story would have a happier ending or a more heartbreaking one if we had. We'll never have the luxury of knowing for sure.

Tuesday, April 22, 2008

The begining...

Today, 4 years ago, we found Hadley's tumor. We have been fighting this beast for 4 whole years. Long enough that none of our kids remember a time when it wasn't a part of Hadley's and our lives. Please pray for our girl...her brain, her tired body...and my mommy heart. I feel like I've been repeating myself for 4 years. Please pray for Hadley's brain and my heart. Maybe we should head for out new parts. (that's my sick sense of humor--I'm trying hard to laugh)

4 years ago today Hadley was 3 1/2, Keegan was 2 and Liam was 5 months old. We thought Hadley was autistic. We had noticed she'd quit using the left side of her body. We tried to trick her into using it. No luck. In the year and a half prior we had been denied MRI's by several doctors. They didn't want to use anesthesia if they didn't have to. They said she was fine. It's common for autistic kids to have sleep disturbance, seizures and developmental delay. They ignored the failed mini neurological exams. They failed her. Today, 4 years ago...Hadley would finally get that MRI doctors in two states, several offices and even one of the best peds hospitals in the country had denied her. Today, 4 years ago our world would be turned inside out and upside down.
Our morning started at our pediatrician's office. We had called the evening before and they had squeezed us in for an 'urgent' appointment. Our beloved ped took one look at Hadley and knew. She had done an internship at Luccile Packard Hem/Onc (Stanford's Children's Hosp.). She performed an exam though...Hadley failed a Babinsky reflex test...could hardly walk now...and her face was noticeably drooping. Our ped sent Hadley and I home with strict instructions to not let her eat or drink anything. She called the children's hospital in Oakland to see if they could get her in for imaging. She had told us there was "something neurological going on". Duh, she's autistic. We had barely walked in the door when our ped called and told me to go straight to the ER. Brandon met me there. We didn't even know to be terrified. We passed time by taking pictures of Hadley picking her nose and showing them to her. =) We finally got the CT scan done. Brandon and I had to wait in the hall. The techs got to work. I stood and stared at Disney movie posters. A young tech that had previously reminded me of a High School boy came out looking like he'd just lost a beloved family pet. I panicked...but didn't know why. He returned with a doctor. They were in a hurry and didn't say a word to us. When they came out to tell us we could take her back to the ER there was no joking, no smiles, nothing. It was silent. I was really uncomfortable and scared. We waited and waited and waited back in the ER. Our appts had started at 9 was now around 6pm and we still knew nothing. Finally the ER attending and the resident who had been treating Hadley came in and closed the door. My heart skipped a beat...then the attending said "As you know we did the CT scan to rule out a brain tumor." We let them know that we had not been told that. They just kept on talking...almost over the top of they had rehearsed this and couldn't get off track. The following sentence changed our lives forever. "Unfortunately, we weren't able to do that. Your daughter has a massive brain tumor." What? What? What? I didn't dare ask them to repeat this...I couldn't hear it twice. They kept talking Brandon freaked out. Hadley was still asleep from the anesthesia. They talked about complications and said they were ready for her in ICU. Brandon had calmed down. I took this as my cue to lose it. I screamed. I swore. I told them it wasn't possible. I yelled at them that she had autism not a brain tumor. I dropped the F bomb several times. I cried and cried and yelled. They told us they'd give us a few minutes and would bring a phone for us...that we should call and have our families come right away. We explained that they were out of state...and they told us they needed to get on planes and get here. ICU, traveling family, brain tumor...I cried some more. I was totally panicked. We made the calls...and got carted off to the ICU.

The first night was hard...I stayed at the hospital and Brandon went home to stay with the boys. I hadn't breastfed Liam since that morning and was in a lot of pain. Gina came, she had been 'here' THIS ICU room...waiting on the same neurosurgeon, with the same IV steroids pumping into her daughter's body to reduce swelling. She brought snacks and hugs and a worried face. I had shut down my emotions. I couldn't survive if I let myself feel any of this. Hadley pulled an IV in the middle of the night. It was awful...but, nothing compared to what was to come. The following days are a blur. I have no idea when my mom and John or Brandon's mom got there. I have no idea what any of the doctors said. The first thing I remember after that is sitting in our Neurosurgeon's office while he explained the surgery and his expectations of it.

This is the beginning of the end of our 'old' world, our 'old' normal, our 'old' hopes and dreams and our 'old' sweet girl...

Thursday, April 17, 2008


A few pictures I took with my new camera yesterday. Today is my birthday and I got a new camera from Brandon's parents. =) Yay! Iloved my 'old' camera but it was really big and awkward and hard to handle with 3 kids running all over. =) Now I have a Sony CyberShot that I love. =) Yay for birthdays...even when they are your 30th...Oy. =)

I realized today that I never updated here after Hadley's latest MRI. *oops* We received one of those "small" miracles. Typically new tumors don't just pop up all over the brain and then sit and do nothing. But, that is what Hadley's did. =) Our docs can't really explain it. They are growing...just VERY slowly. They are being called "Stable". This is a tricky term in the world of Oncology. It is good...sometimes the best, but it can be misleading. Stable technically means that the tumors haven't grown significantly, or increased more than 25% in volume to be exact. Regardless, this news is still much better than the news that we, and our doctors, were expecting. =) We're still battling with some long term brain tumor stuff..but over all Hadley seems to have stabilized. =) Her next MRI is the last week of May. We are so thankful for this miracle...and hope that it lasts and lasts. =)

Thank you so much for the prayers and thoughts for our family.

Thursday, April 3, 2008

The thing that hurts the most...


This is a picture of Hadley this evening. No words can describe the way my heart has broken over and over again in the last few weeks. I have watched her body fail her...and it hurts so much.

Our family life is in transition. For the last year-ish we have been able to sort of goosh into the 'typical' life. We've had reminders here and there that our 'normal' is not typical...but, for the most part we've been able to 'play normal'. Adjusting to (what I lovingly/grudgingly-depending on my mood-call) life in the trenches. Our lives have started revolving around our girl and her brain tumors again. It's not a fun world to live in. I won't apologize for the fact that I am about to be living, eating. breathing, dreaming brain tumor and Hadley's care. I try to preserve as big a piece of myself as I can. I will try to remember that people want to have conversations that don't include the latest trial chemo drugs, the best neurosurgeons in the country and the fact that I envy people who have never had a chronically ill child. But, be patient with me. Please.

Please pray for my girl. Pray for my boys. I think they're pretty swell. Regardless, they shouldn't have to 'deal' with any of this. They're growing up so fast...having to learn lessons they shouldn't have to learn this young. My heart hurts for them. Please pray for Brandon and I as we make decisions for Hadley...and remember to lean on each other through it all. Pray for our friends and family...they are going to need strength and patience to 'deal' with and support us...all while they're hurting too.

Please pray that our move goes smoothly and that we find a home so I can stop worrying about it. =)

Pray for all of our Brain Tumor friends...and hurting kiddos and their parents everywhere.

Please pray for cousin Stevie...and her family who are coming up on one year of missing her. We love you and miss you Stevie. Steve, Gina, Aly and Noah we love you.

(wow, I sound really needy don't I?)

Just pray! It's the only thing I know to do when I'm feeling this 'lost' and helpless. (MRI on Friday!!!)