Sunday, December 14, 2008
Our sweet Hadley finally got the miracle we've been praying for on friday morning at about 3:30 am. It is not the miracle we had hoped and longed for...but it is her miracle. She is whole again. Our hearts are hurting more than we could have ever imagined...but, we are so thankful that she is finally free. Hadley was always so much bigger than her body, than this world...now, she has no limitations. We will miss her forever and ever...until the day we join her again.
"Things never go so well that one should have no fear, and never so ill that one should have no hope."
-- Turkish proverb
We love you sweet girl...SO much. I hope that you knew that. We are the luckiest family ever to have had you for our very own. You will always be our sunshine baby girl.
Please see Hadley's page for funeral service details. www.HadleyFox.com
Tuesday, December 2, 2008
In mid January we will be welcoming a Korean foreign exchange student into our home. Today we completed the final step in the application process, the home visit, so it's finally official. We are excited at the opportunity to learn from and teach this eager student about our culture etc. He will be attending school at Columbia (with the boys). He's 15 and his life dream/goal is to go to MIT. We look forward to and are very thankful for the journey ahead. I'm excited to share all our adventures with him with you all. =) If any of you have experience or would like to suggest activities, meals, day/weekend trips etc we would love to hear from you.
Have a great week. =)
Sunday, November 30, 2008
I was uploading photos and video to photobucket today and I found this video. Hadley was in Kindergarten. I had almost forgotten how sweet and 'little' she sounded/was then. This video made me all warm and fuzzy inside but very, very sad as well. I need to remember the good times to get through...but it is also hard to remember the happy times...it reminds me how bad she is doing now. =(
Friday, November 28, 2008
Keegan's glasses were finally ready for pick up today. He and I went and got them. I have to tell you that I am already SO thankful for them. A few minutes after we left he was already commenting on how much better he could see and how much 'bigger' things looked. All of that AND he looks ADORABLE in them. =)
Tuesday, November 25, 2008
A few gift ideas (including lots under $30):
Plus a free treat for you when you spend $40 or more (or it makes a great stocking stuffer):
Mini Body Care Set. It includes mini-size Mary Kay® Loofah Body Cleansers and Mary Kay® Nourishing Body Lotions in Red Tea & Fig and Lotus & Bamboo and a beautiful bag.
It’s yours FREE when you purchase $40 or more (excluding tax) of Mary Kay® products
Purchase one regular sized Oil Free Eye Makeup Remover and get a travel size bottle free! =)
And, as always, shipping is FREE!
Please vote for our friend's baby. He is one of two finalists in a cutest baby contest. =) It'll only take a minute and will put some pretty big smiles on some pretty deserving faces. =) Thanks Ya'll.
Please remember to validate your vote by checking your email and clicking on the link. Otherwise it doesn't count. =)
Sunday, November 23, 2008
Here are some of the pics.
Those who know me know that I am a sucker for the latest and greatest product. Especially if it is a cleaning product. I'd love to say that it's because I just love cleaning...but then I'd be a huge liar. I don't love to clean but, I do love having a clean home. So, I think I buy new products to keep myself motivated. =) I like sharing my opinions with those around me because I hate spending money on things and being disappointed. =)
So, here is my RAVE. Arm and Hammer Essentials Cleaner/Degreaser. Love, love, LOVE it. http://www.sustainableisgood.com/blog/2008/10/armhammer.html http://www.armandhammeressentials.com/index.aspx
First it costs less than the other cleaners I usually keep on hand. The starter kit was $3.79 (at Target) and includes an empty spray bottle and one small 'refill' cartridge. The refills come in packs of 2 for $3.79 ($1.89 each).
Secondly you use the same spray bottle over and over. This not only creates less waste but, let's face it...it's one less thing in the grocery bags. =) The refill cartridges are easy to use. You don't even have to 'open' them. You unscrew a cap then screw it onto the top of the bottle. There is a piece of plastic inside that cuts the the 'foil' and it empties into the bottle. Then you fill the bottle with tap water.
Third, it smells and works GREAT! =) No harsh chemical smells. It smells fresh and clean. It leaves everything clean and shiny with no sticky residue.
This is one product I am so glad I tried. =)
Thank you for fighting for our freedom. How great is it to be there?
Your Cousin Keegan
(1st grade-age 6)
Keegan wrote this at school for Veteran's Day. =) He's such a sweetie. My cousin, Kyle, is on his 2nd tour in the Middle East with the Marine Corps. Please be praying for his safe return home.
Wednesday, November 19, 2008
Keegan and Liam were chosen, independently, by their teachers as the student in their classes who exemplifies this 'characteristic'. I am so proud of them. =) I'll add some pictures etc. later. =)
Monday, November 17, 2008
Saturday, November 15, 2008
I've hesitated posting the following for a few reasons. I don't want people to think I am 'moving on' before Hadley is even 'gone' and secondly I don't want to look like a failure if I don't achieve my goals/timeline. But, I'm going to put those things aside and post and hope for some accountability and encouragement.
My #1 goal is to lose 80lbs. Yes, I DO have 80lbs to lose. For now, I'm going to focus on the first 40. I start to hyperventilate when I think about taking on the whole 80. I've had a lot of people tell me that I shouldn't worry about this right now. I have more important things going on etc. While that is true I honestly believe I will be better equipped to care for and deal with all of this if I'm in better shape. PERIOD. So, on November 3rd I joined the gym up the street from our house. My friend Mollie is a member there as well. We have been keeping each other motivated and accountable. It's great having a workout partner again. =) Thank you Mollie. Along with this I have been focusing on cutting out a lot of the junk I was eating out. I've been using a high protein/high fiber diet and drinking lots of water. So far I feel a lot better. =)
My second goal is to start classes again on January 5th. My first course will be a biology course at Portland Community College, anatomy to be specific. I have a few classes to take to get into the Associates in Applied Sciences program at PCC. My plan is to use that degree to get into a nursing program. Which nursing school I choose will depend on when/where Brandon's career takes us next. I'd like to avoid staying behind to finish school while Brandon goes to his next duty station...so I'll have that in mind after I finish the associates program and am applying to nursing schools.
So...there's my plan. Thanks for 'listening', thanks for the love and support. =)
Tuesday, November 11, 2008
Ms. Mollie's Taco Soup
5-6 cans of your choice of beans (my faves are black, kidney and garbanzo)
1 can tomato sauce\
1 can corn
2 packets Taco Seasoning
1 packet Ranch dressing mix
about 3 cups water
I like to add spanish rice to mine but, I serve it on the side because not everyone likes it.
You can use any kind of meat you'd make tacos with (or no meat).
I usually brown or cook the meat then throw everything in the crockpot on low for several hours. You can also just do it on the stovetop if you're making it last minute. =)
I serve it with shredded cheddar, Fritos and sour cream. If you're serving a large group you can always make meats separately and serve on the side (to be added) just in case there are vegetarians in the group. =)
MamaFox's Peanut Butter Cup Protein Smoothie
1/2 cup milk
1/2 cup water
2 scoops of your fave chocolate protein powder (I use Body Fortress Whey Protein)
4 tbsp Peanut Butter
As much ice as you like
I use my Magic Bullet to blend for a few seconds...but any blender will work.
Delish and it stays with you and keeps your belly full for quite some time. =)
Have a nice week.
So, Keegan got all A's except a B+ in Math. =) His teacher did let us know that she is having to work with him a little more than the other students but, she suspects it has a lot to do with his vision and hearing issues and all that is going on at home with Hadley. She reassured us that his attitude is excellent and he has a real desire to learn. He gets along with others very well and is a joy to have in class. We do need to work on his fine motor skills. He has always been a little behind in this area so that was no surprise but, she did give us some good ideas for fun activities. =)
Liam is doing well also. He is ahead of the class in some areas and even with or maybe even a little behind in a few others. So, overall he's right about in the middle of his class. He can write all the letters in his name but not quite in order yet. His fine motor skills are quite mature for his age. He and Keegan have always been opposite in this regard. Keegan's fine motor skills are behind and Liam's are ahead. Keegan recognized all the letters of the alphabet and their sounds very early but had a hard time writing them. Liam can write them all but can only name a few and doesn't know their sounds yet. Just one more example of how different kids are...and how they all need a slightly different approach to teach them all effectively.
I am so pleased with the education they are getting and the environment they spend so much of their time in. They both seem to be thriving despite the heartache at home. I am so proud of these boys. SO proud.
Friday, November 7, 2008
Here it is:
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Thursday, November 6, 2008
Your result for Are You a Jackie or a Marilyn? Or Someone Else? Mad Men-era Female Icon Quiz...
You Are a Marilyn!
Marilyns are responsible, trustworthy, and value loyalty to family, friends, groups, and causes. Their personalities range broadly from reserved and timid to outspoken and confrontative.
How to Get Along with Me
- * Be direct and clear
- * Listen to me carefully
- * Don't judge me for my anxiety
- * Work things through with me
- * Reassure me that everything is OK between us
- * Laugh and make jokes with me
- * Gently push me toward new experiences
- * Try not to overreact to my overreacting.
What I Like About Being a Marilyn
- * being committed and faithful to family and friends
- * being responsible and hardworking
- * being compassionate toward others
- * having intellect and wit
- * being a nonconformist
- * confronting danger bravely
- * being direct and assertive
What's Hard About Being a Marilyn
- * the constant push and pull involved in trying to make up my mind
- * procrastinating because of fear of failure; having little confidence in myself
- * fearing being abandoned or taken advantage of
- * exhausting myself by worrying and scanning for danger
- * wishing I had a rule book at work so I could do everything right
- * being too critical of myself when I haven't lived up to my expectations
Marilyns as Children Often
- * are friendly, likable, and dependable, and/or sarcastic, bossy, and stubborn
- * are anxious and hypervigilant; anticipate danger
- * form a team of "us against them" with a best friend or parent
- * look to groups or authorities to protect them and/or question authority and rebel
- * are neglected or abused, come from unpredictable or alcoholic families, and/or take on the fearfulness of an overly anxious parent
Marilyns as Parents
- * are often loving, nurturing, and have a strong sense of duty
- * are sometimes reluctant to give their children independence
- * worry more than most that their children will get hurt
- * sometimes have trouble saying no and setting boundaries
Thursday, October 30, 2008
From Hadley's site:
Wednesday, October 29, 2008 4:30pm
We're still here plugging along. It's been another hard week. My Papa Bishop passed away Friday night. He was ready to go and has been ill for quite some time...but, my heart is still quite broken. Do you ever just feel like 'it' never ends? I'm feeling a little emotionally trampled these days. I'm sure things will get 'better'. I hope.
Hadley has had good days and bad days...and days that seem stable when compared to the past several weeks. Her alertness is sort of hit or miss, her nail beds are blue...sometimes up to her first knuckle. Her days and nights are all confused. She doesn't like being moved around a lot...but tolerates it like a champ. She is such a sweet girl.
I have a special prayer request today. I haven't shared this with very many people because I was afraid that I was just being 'paranoid' mom who's in a vulnerable emotional place...but, Keegan needs our prayers. Well, our whole family does. Keegan is losing hearing and vision in his right eye and ear. He has failed both vision and hearing exams. We are quite concerned with this and have already seen our family doctor. There is a genetic disorder that we had discussed with Hadley's doctors early on in her treatment but never really explored. It is called Neurofibromatosis.
What Is NF?
Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
Types Of Neurofibromatosis
Types Of Neurofibromatosis
Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.
Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.
Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.
Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.
At this point we are still hoping to rule it out...but it will be a process. We are working on the best way to get a referral in to see the Genetics Specialists at Doernbechers/OHSU and in the meantime we have an appointment scheduled to see a pediatric ophthalmologist in Lake Oswego on the 17th. Our doctor's office is also working on getting us in to a pediatric ENT. None of this is being taken lightly and while that 'worries' me I am also very grateful it's being handled so quickly. My poor boy is complaining of headaches almost daily now (probably because of his vision issues) and seems frustrated with school work. That is hard because he loves school and learning. For his to struggle is so out of the norm. Anyway, please pray for our family. It's hard not to be terrified...and my heart is just broken in pieces. We haven't talked to Keegan about any of this yet. He is such a worrier and with all that is going on with Hadley well, I just don't want to traumatize the poor little guy. He will very likely be having an MRI of the brain sometime soon...but, we're hoping to meet with the genetics specialists first. Anyway, please keep this hush hush around our boys for the time being. They really don't need one more thing to worry about.
Baby Hope is thriving in our home. We all love her so much. She is a really fun little kitten with lots of personality. I'm so glad she found her way to us. =) She is funny and sweet and adorable and gives us an extra little someone to love on and giggle over. We're thankful for her.
Thank you for stopping by to check in on us and for praying for our girl and our family.
With Faith, Hope and Love,
Sunday, October 19, 2008
Friday, October 17, 2008
I guess I'm just having a 'we got jipped' day. =(
The sun is out...maybe we'll plant some fall flowers..when she wakes up...
Wednesday, October 8, 2008
Hint: Go to www.youtube.com and search for "Misheard Lyrics _________________(name of your fave song)".
Here are a few of my faves. =) You'll have to scroll down to the bottom of this page and pause the project playlist player. *sorry*
A little background on Yellow Ledbetter
And because I was (who am I kidding I STILL sing it wrong) guilty of mishearing the 'bathroom on the right' lyric. =) Who sings about bad moons rising anyway. All I want to know is where the darned bathroom is. *snort*
Have a great day. =)
Tuesday, October 7, 2008
Brandon has been doing the school time shuttle lately. Today, he came home with a pretty funny story. Liam is the baby of the family. He can get away with a lot because he is SO stinkin' adorable and cuddly. So, when his teacher, our beloved Mrs Woods who has taught both our boys now, pulled Brandon aside this afternoon and stated that she was having a bit of an issue he was worried...and rightly so. Liam has been known to go so far as using alter egos to carry out his naughtiest activities. Cyrus and baby goo goo are his old standbys but, as he's gotten older he's been known to blame...errrrr...spot Smeagle (aka Gollum) being extremely mischievous. Well, as it turns out Liam's mere presence is to blame. His dashing good looks and sweet disposition have more than his mama's heart melting. The girls are actually fighting over who's going to sit next to him, who's his best friend etc. Apparently poor Mrs Woods had to break up three 'fights' just TODAY. Oh my goodness. All I have to say is...Girls, girls don't you know that none of you will ever be good enough for my sweet baby boy. *snort* All Brandon had to say on the subject was "I just hope he can keep it up for another 15+ years." Oh my.
Last wednesday was the annual jog-a-thon at the boy's school. Their school only has two fundraisers (the the children are really involved in) each year. I am pleased as punch that one is a jog-a-thon and the other is a read-a-thon. These are the kind of fundraisers I can get behind. I'm not gonna lie...I do enjoy me a good cookie dough sale or three but, this is so much better for the kids (and for me). =)
Liam has been looking forward to this jog-a-thon for 2 years. Keegan participated when he was in Jr Kindergarten and Liam was SO envious. I was a little afraid that Liam wouldn't want to go to school anymore after the jog-a-thon because it's all he talked about for SO long. Fear not. Here we are, a week later, and he is still enjoying school. =)
So, on to my awesome boys. First, Hadley was having a relatively good day so Brandon and Hadley and I were able attend and cheer on a few of our favorite kiddos. =) Now, are you ready for this? My little I have my daddy's short legs, asthma, and at nearly five an audible heart murmur, Liam ran NINE 1/4 mile laps in 30 minutes. That's two and a quarter miles folks!!! Seriously?!? I know. He's a super hero. =) Keegan, my poor little flat footed boy who ran it in converse complained of his feet hurting the whole time but, still managed to knock out a mile and a quarter (5 laps). Woot Woot!
So, most of their pledges were 'flat' pledges (meaning they weren't per lap). They each wound up raising over $80. Not too shabby for having parents who totally neglected to help them find sponsors! Poor guys.
Anyway, this is a fun event and I wanted to share a bit. =) I love these stinky boys! =)
Wednesday, September 17, 2008
Yes, a camel. Keegan announced this evening that his class is taking part in the school Christmas program. The boys attend a private Christian school so they are able to do a faith based program. They are doing, of course, the traditional nativity type program and Keegan announced that he is really hoping to be a camel. =) Brandon asked him why he didn't want to try out to be a wise man or some other human character and he said "No way! Then I'd have to carry the wise man's box with the gift in it and those might be heavy! I'd have to carry that thing all over the place." Brandon then pointed out that the camels carry EVERYTHING. *Ha ha*
Further along in the conversation there was some debate about how many camels would be involved. Keegan insists on three, Brandon thinks there were many more...something about wise men 'rolling deep'. Huh?!?
So, there you have it. Keegan, the cutest camel in school. *snort*
Project Brain Child is an iniative of the Pediatric Low Grade Glioma Association.
Members Project is a program sponsored by American Express where cardmembers submit innovative ideas for projects that make a difference. Cardmembers vote on the projects, and the winning 5 projects will receive up to $1.5 million in funding from American Express, awarded as follows:
$1,500,000 for the winning project
$500,000 for the 2nd place project
$300,000 for the 3rd place project
$100,000 each for the two remaining finalist projects
The Pediatric Low Grade Glioma Association (PLGA) submitted their project idea to American Express in August. They will use the funds to conduct a feasibility study to create a National Pediatric Genomic Brain Tumor Registry. The information collected in this registry would allow scientific researchers and medical experts to target specific genetic abnormalities with existing drugs most effectively.
The registry will embody all brain tumor types, not just low grade gliomas.
Project Brain Child was selected from over 1190 other projects to be in the top 25. As of today, September 17, they are in 9th place.
They need to be one in fifth place or better to receive an award. Votes must be cast by September 28.
Any American Express cardholder may vote. If you don't have an American Express card, you can still help by spreading the word to your friends.
Brain tumors kill more children every year than all other diseases combined. Please help this effort.
(Copied and pasted from Steven's Page)
Monday, September 15, 2008
Be on the lookout for pics. =)
Sunday, September 14, 2008
Yesterday was "Wish Day" at our home. Make a Wish came and treated Hadley to a morning full of magic. Everything was just as it should have been. EVERYTHING. Hadley felt great, better than I've seen her feel for a few weeks. She looked beautiful. You could tell that she was amazed by everything. We will always remember and be thankful for this day. If you ever have the opportunity to volunteer I highly recommend connecting with Make A Wish. What a wonderful organization.
Please continue to pray for our girl and for our family. The road ahead is...well, there are no words for this. Please just pray.
WIth Love and HOPE,
Wednesday, September 3, 2008
Friday, August 29, 2008
Saturday, August 23, 2008
It's been a weird, hard, draining day. I want, so much, to take a Lunesta and go to bed. This is a day I never wanted to have to endure...although it won't be, by any stretch of the imagination, the worst...and I've done it on 'my own'. Hadley's appointment was at 10 this morning, it's now 9pm and I haven't even gotten a phone call from Brandon yet. The needs of the Coast Guard come first...even when your child is dying. I try hard not to complain. I am proud of his service and even proud that I am capable of thriving as a military wife...but, today, I felt alone and like I needed/need him more than 'they' do. Tomorrow is a new day and he will be home. I will have my chance to exhale and lean on him again. I am so thankful for him. What is that saying about not truly appreciating someone until they're not there? =)
The day started with Hadley coming into my bed at 5 am to tell me her head was making her angry. =( She told me she was ready to feel better and that she loves me. She cuddled in and we both went back to sleep...
After dropping the boys off with Mollie and the girls we got checked in at the hospital right on time. Hadley was totally compliant with the whole stat taking routine even though she's a bit out of practice now. She even remembered most of her favorite nurses and med assistant. They were tickled to see her and how much she'd grown up in a year. =) (This is our team here in Portland. We've been going to the hospital in Seattle for the last year plus.)
The appt with our oncologist was hard...but good. She knows Hadley. I think the fact that she hasn't seen her since June of last year helps, actually. The changes were obvious. Instead of saying "Hadley looks great." she said "Hadley, you look so happy." And that is the truth. We talked, she and Hadley talked, she did a little mini physical, we chatted about the boys...we pet a visiting cat and dog. I really felt like she was seeing Hadley and not spending the entire appointment trying to figure out what expiration date to put on her. At the end of the appointment she did ask me if I wanted her opinion. I told her I did and explained that we still haven't decided about school. She told me that "honestly after seeing her last few sets of films and what I found in the physical...well, Hadley's on her own journey. Most kids wouldn't be here. It's so hard to tell when she will go." She does do everything in her own time and way...so, it's no surprise she's doing this her way too.
Having said that, I had a really hard reality check today. Just when I think I know my girl and her limitations she amazes me. This time it hurt though. After checking with me to make sure it was ok our doctor asked Hadley "What happens when someone dies?" Hadley answered "Everyone is really sad." Up until that moment she hadn't let on at all that there was ANY negative association with dying. She has always talked in a very positive way about dying. I didn't even think it had occurred to her to be fearful that it might hurt or be scary...or that, an even harder concept for her to grasp, those of us she leaves behind would be hurt and sad when she's gone. Hearing that broke my heart. She knows. In some sense I'm glad. I want her to know how much she will be missed...how big her impact is. I don't, however, want her to have to carry the burden of worrying about us staying behind and being sad. My poor sweet girl has obviously been carrying this around with her. She answered without hesitation. All she needed was someone to ask her the right question. *sigh* It blows my mind that she is thinking of us. What a bittersweet blessing...something we once thought her incapable of. Now, during the most trying time of her life her first thought is of us. Her love amazes me. It is so pure and genuine.
So, our oncologist confirmed what I'd been fearing. The tumors are most likely growing down her brain stem When you ask her to stick her tongue out it clearly goes to the left and she BARELY even has a gag reflex left. This would probably explain why she's been having such a hard time swallowing her meds and has given up on food almost entirely. There are a few favorites she'll still put forth the effort for but, in the words of her doctor today "it's just too much work and too frustrating." For the most part she's drinking vanilla ensure. I was reminded that even if she's more comfortable in other positions and places she needs to be eating and drinking sitting up in a hard backed chair. No eating sitting in bed, the car etc. It's just too dangerous now.
Hadley told her without prompting that she has owies in her head and pointed to exactly where it hurts her. I explained that we usually do Tylenol and a nap...but that yesterday was the first day that I really felt like we didn't have control with Tylenol and rest. When she asked Hadley if Tylenol makes her head feel better she just shrugged her shoulders and said "I'm nice...I'm a nice girl." This broke my heart. I think that in her own way she was trying to tell us that when she's being mean and screaming and whatnot that it's not her...it's the pain. I already figured this...but, I kind of feel like my unwillingness to see her disease progressing also kept her uncomfortable...in pain. That's hard. So, from here on out she has a pain med script.
We obviously also talked about our options to care for Hadley. In her opinion, it is time to call in Hospice care. She may only need a weekly visit for the time being but, that's ok. She feels like the resources would be helpful etc. So, she's working on that referral. I thought I'd have a really hard time actually saying "yes, I think it's time too." But, it felt right. I kept my composure through the whole appointment. I kept a smile on my face so as to say "See, I'm handling this ok." or even to hide from other parents where we are on our journey. I've always feared letting newly diagnosed parents see 'worst case scenario'. Oddly, the hardest part, the point at which I finally 'lost it' was walking out of the clinic. I realized that it was our last time. We've spent the last 4 1/2 years of our lives in and out and in and out of these clinics and inpatient floors...and now we're done. The first of the things we'll leave behind. I wasn't prepared. I thought I was doing so well. Hadley bounced out of the clinic saying "Goodbye everyone. I love you." and I cried all the way to the elevator. She is so much stronger than I am.
Well, Hadley actually needs her meds and Liam must be growing because he's working on meal number 42 for the day. We're supposed to have internet by tomorrow afternoon so I'll try and be better about updating.
Please don't forget to email me your addy if you'd like an invite to the ball. FoxiFamily@yahoo.com
With Love and HOPE,
Monday, July 21, 2008
I am all over the place. Today has been a relatively bad day so usually I wouldn't be sharing...but, I feel like I'm more honest when I'm raw and hurting. I have a lot of feelings and thoughts that I'm not comfortable sharing yet. I have my moments of total panic, heartache, sadness, defeat, anger, physical illness and even entitlement. I'm sure all of these things are normal. The fact that they are doesn't make me feel any better or any more normal for that matter. I feel like our family, our situation, our lives and our losses are totally unique. I know that isn't true but, it feels that way. It makes me really, truly heartsick to acknowledge that SO many other families have traveled a path quite similar to ours.
Normally, next week we'd be doing an MRI to check on the tumors...this has been our schedule for the past 2 years now. I think my body is preparing for it even though it's not happening this time around. Another peds brain tumor parent shared a similar feeling a few weeks ago. I totally understand what he was saying now. At the moment my emotions are all over the place. One minute I'm fine...the next, watch out. I'm a mess.
For, the most part though I am doing well. We are focusing on having FUN. There is no point in wasting days away being sad and trying to anticipate the future. Hadley makes it very easy to live in the now and enjoy every moment of it. In my quiet moments though, I am often scared, sad, lonely, etc.
The boys have a healthy grasp on what is happening. They know that Hadley's tumors are growing and that she will eventually die. They understand, as much as they can, what it means to die. I do purposely allow myself sad moments with them so that they understand that it is OK and normal and encouraged to express their feelings. One area that we do need to work on is encouraging people to shower them with love and kindness. Hadley is getting 'spoiled' from all directions. Everybody wants to help make magic for her (rightly so). But, we do need to remember that the boys are only 4 and 6 and need a little extra 'loves' during this too. So, we are going to try and make one on one 'date' times for the boys with Brandon and I.
Overall...I feel like we are all living well. We are making the most of the days we have. There is a lot of pain below the surface...but, we're dealing with it as we can.
Thanks for checking in on us. Please make sure to visit Hadley's site for pics and more detailed day to day type updates. www.HadleyFox.com
Monday, July 14, 2008
Hadley is such a gift that we HAVE to focus on the joy she brings to our lives and not the heartbreak we are feeling. She honestly makes it hard to be too sad. She loves life so much. She has always done things her way and in her time...I am finally growing wise enough to embrace this concept and enjoy life with her. =)
Thank you for your continued love, support and prayer. We truly appreciate every last one of you.
Please plan on joining us for Hadley's Annual Birthday Celebration. This year we'll be hosting a "Royal Ball" (think prom for an 8 year old with a Disney princess theme). =) Saturday, September 27th 2008. More details will follow.
Friday, June 27, 2008
Hadley still does! =)
Our sweet girl, Hadley, was born on September 27th, 2000. She was perfect and gorgeous and we were so thankful for her. After a few years of going around and around with doctors about something being 'wrong' we finally got a definite answer. Yes, there was something wrong (I wasn't losing my mind after all). Hadley was diagnosed on 4-22-04 at the age of 3 with a very large brain tumor. She has been on treatment for her tumor since then. In February of this year we got the news that she had relapsed. In addition to the original tumors on the right side of her brain, she now had tumor on the left side of her brain. The new tumor was growing much quicker than the original tumor areas. On May 30th we did another MRI that revealed even more growth and spread. The following week we, with her medical team, made the heartbreaking decision to end treatment and let Hadley have some magic in her life.
Hadley is a 7 year old little girl who loves life. She is happy and funny and loves to be the center of attention. She loves all things frilly and girly. She has a beautiful innocence that I am very envious of and grateful for
Hadley has two brothers Keegan (6) and Liam (4). They are great boys who have been wonderful brothers to Hadley. She loves them both dearly. I'm sure that the compassion and acceptance they have learned through Hadley's journey will carry them far in life.
Hadley's daddy, my husband, is a Petty Officer in the US Coast Guard. We'd love nothing more than to be able to grant Hadley's every wish while she is here with us. But, like most families these days, we are living paycheck to paycheck. If you are willing and able to help us give Hadley some magic we would be eternally grateful.
To learn more about Hadley and her family please feel free to visit: www. HadleyFox. com
Thank You So Much!!!
Friday, June 20, 2008
Sunday, June 1, 2008
Thursday, May 15, 2008
Wednesday, May 14, 2008
I am so pleased with how they turned out. =)
These are just proofs...in the actual prints the edge of the backdrop is cropped out.
I had a few done of Liam alone because he was in a good mood and we didn't have any of him alone yet, this year. =)
Wednesday, April 30, 2008
Thursday, April 24, 2008
Pampered Chef Online
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: http://www.pamperedchef.biz/christinaheath
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
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-
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
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
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
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
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
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.
Thursday, January 24, 2008
So here are a ton of pictures in 6 different slideshows...and because I'm lazy I copied and pasted everything from Hadley's webpage blog. I'm just that inconsiderate these days. Have I mentioned I'm ready for this patrol to be over and for my husband to be home? Oh, I have? Never mind then. *LOL* I am DONE with single parenting. =)
Ok, so here ya go:
Well, Morgan's miracle is well under way. Please continue to pray as she still has a big battle ahead of her. www.caringbridge.org/ca/morganfaith
I've got a TON of pictures to share. I downloaded for the first time in months last night. Gotta love those huge memory cards that just enable me to be lazy about it. =) So, I don't have a lot to say tonight. Things are status quo here. Which is a blessing. =)
The slideshows are in backwards order.
The 1st is Keegan's birthday last weekend. =) Yes, my sweet boy is 6. =)
The 2nd is the boys opening their new Nerf Tag guns and enjoying them. (thanks Uncle Brian and Auntie Manda)
The 3rd are some pics from our "Christmas" with Uncle Clay, Uncle Brian and Auntie Manda
The 4th is Daddy's ship leaving on December 12th.
The 5th is a few random shots right before Daddy left. Including "Christmas" with the Keane's and Keegan's hair cut.
The 6th is the Winter Celebration and visit with Santa at Keegan's school. Our local Fire Dept was GREAT! =)
Here are the slideshows:
Thanks for checking in on us. We hope your new year is going well. Please continue to pray for Morgan, our daddy and the crew of the Mellon, and all those kids out there fighting brain tumors.
With Love and HOPE,
Angela and Family