Thursday, April 24, 2008

Stevie

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-
Angela

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 Oz...seek 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 am...it 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 us...like 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'...literally...in 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

Overdue

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...

Photobucket

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.

www.HadleyFox.com (MRI on Friday!!!)

Sunday, March 30, 2008

Heavy...

Today alone 9 children in the US will be diagnosed with a brain tumor and 3 will die as a result of theirs!!!


Hadley is in this video. This is a really scary time for our girl. I have posted journals on her website touching on my thoughts and feelings about her declining health and what this tumor is doing to her body. We are scared for her. For a few years now we've fought quality of life battles...now we're fighting FOR her life. I know that is hard to read. It is even harder to type.









Brain Tumor Facts
From www. TTPF. org

- Annually well over 3,500 children (ages 0-19) are diagnosed with a brain tumor.







- Brain tumors can be malignant or benign. Even benign brain tumors can be life-threatening depending on location.







- There are more than 120 types of brain tumors, making effective treatment very complicated.







- Brain tumors are treated by surgery, radiation therapy and chemotherapy used either individually or in combination.







- In the past 20 YEARS only ONE new cancer drug has been approved for pediatric use.







- The cause of pediatric brain tumors is unknown.







- 40% of children with brain tumors will die of the disease.







- Childhood cancers in the United States are orphan diseases. An estimated 12,400 children will be diagnosed with cancer in 2007.







- Among the 11 major types of childhood cancers, leukemia, brain and other central nervous system tumors account for over half the new cases.







- Approximately 70% of children with cancer participate in clinical trials compared to only 3% of adult cancer patients. Many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research.







- The National Cancer Institute spends $4.8 billion on all cancer research. Only 3% ($170 million) is directed to pediatric cancer research. That’s 3% for all kinds of pediatric cancer combined.







- Improving the outlook for children with brain tumors requires research into the causes of and better treatments for brain tumors.

Thursday, March 13, 2008

Wow...

This has been one crazy year so far. I can't it believe it's mid-March already. Where does the time go?

Brandon is home from winter patrol. The lucky guy got to spend Christmas off the coast of Panama working on his 'tan'. *snort* It was hard on all of us to have him gone...but, we always find a way to make things work and this was no different. In an odd way it kind of feels like a right of passage. We are, after all, a military family. I'm proud to say that we managed to make it a great Christmas despite all the trials. The kids had a great time and that's what is most important. We had a few huge cell phone bills due to International calls to and from Daddy...but we all smiled through it (for the most part).

Hadley, in case you don't read her page (www.HadleyFox.com), has relapsed. Her tumor has now spread to the left side of her brain and there are spots near the back of her brain as well. This was totally unexpected, caught us totally off guard...and honestly...devastated us. It's been almost 3 weeks now since her last MRI and we are really focusing on keeping things 'normal'. I had grand ideas of traveling and saying adios to the rest of the world for a bit. A sort of "just in case" thing...but, I soon realized that the best thing for all three of the kids, for now, is to keep their lives as 'normal' (stable) as possible. Hadley has another MRI in 3 weeks. He treatment options are very limited (if there are any at all) and we need to see how aggressive these new tumors are before we decide on a plan of action. This made me really nervous at first...but, when the reality of the situation finally hit me I understood that it truly is the best for Hadley. All of the treatment options we 'may' have are a lot more intense than what we've had to put her through in the past. If we can avoid them and prolong her quality of life we're more than willing to do so. The clinical term for this plan is "watch and wait"...I don't like waiting very much...so we're learning how to "watch and LIVE" instead. We're aware that her symptoms are worsening...but are working hard to go about our lives until we know what we're dealing with. It's a hard lesson to learn...but an essential one. Please pray for our sweet girl's miracle.

The boys are doing great. Keegan is LOVING the fact that he can read. He's really flying through his advanced reading program now. I'm so proud of him. Today he was doing homework and he was supposed to find pictures that started with the letter K. He often complains that his homework is for babies...anyway, there was a picture of a cat. He started to color it. I said "does Cat start with K" without missing a beat he answers with "No, it starts with C. But Kitten starts with K, MOM." Oh my!

Liam is still our sweet little monkey. He's always cracking us up and showering us with love and kisses and definitely keeping us on our toes. I am so thankful God chose to bless our family with him. =) His latest escapade was scaling the refrigerator to get at a cake that was sitting on top. We have pergo flooring in the kitchen which can bee pretty slippery. He brought a chair from the dining room (all the way down the hall) then put a plastic 4 legged stool from Ikea on top of it...apparently that wasn't tall enough so he then emptied out a plastic toy bin and put that on top of the stool. I really wish I'd taken a picture. Honestly I was so freaked out it didn't cross my mind at the time. Anyhow, he climbed up this death trap and sat on top of the fridge and at the entire top layer of the cake!!! There was chocolate frosting EVERYWHERE!!! I was so glad he didn't break his neck I could hardly even punish him. We did have a quite extensive safety discussion however. Monkey.

Brandon was promoted in August and is now over qualified for his current billet. Usually when this happens you get short toured immediately and just get sent wherever you're needed. The command took pity though and let us 'rotate' during the normal station change season. We got orders last week and are headed to Station Portland (Oregon not Maine). Phew. Thankfully we are already established with doctors down there so all we'll have to do is have charts from the past year transferred. If worse comes to worse we can travel back up here to meet with our current docs. Our move date will be around June 15th. So, we've got about 3 months to prepare for the movers, purge household clutter and find a new home. The boys are excited to go to Columbia Christian. I'm praying my heart out for a scholarship or financial assistance. Oy. We'll have to set up schooling for Hadley once we have an address. The sooner the better!

I'm still selling a little Mary Kay here and there. I'm not real gung ho about it...and that's ok. I'm not a real sales-person type. *ha ha* But, if you need it, I have it. Mostly, at this point, it's just supporting my own MK habit. Eventually I may get more serious about it. www.MaryKay.com/AngelaFox

Brandon and I celebrate our 8th wedding anniversary on Monday. I can't believe it's really been that long. We've been through some pretty crazy stuff together. I can honestly say I'm quite proud of 'us'. I think we're doing pretty darn well at this whole marriage thing. *giggle* So, congrats to us. =)

I do have new pictures to post but those will have to wait until another day.

Maybe if I update more often I won't have to write such a novel. *ugh* I need to get on a better schedule...maybe I'll add blogging time to it.

Have a great weekend. I'm sure I'll have some pictures ready next week.