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Monday, May 30, 2011 11pm

Hello,

Not a moment goes by that Hadley is not on my mind and in my heart, but there are times that are happier or sadder or heavier than others. I am still moving through my grief, as are the boys. They've both grown up SO much since Hadley died. It's hard to even think about at times...it's good, and right, and as it should be that they are growing up, but every school picture, every birthday, every Christmas...one more milestone she won't reach. It'll never be 'ok' in my heart. We keep moving though life. It's what is right and good...

I have finished chemo and had my dreaded hysterectomy. I don't think there are enough exclamation points to convey my happiness. I try not to complain, but it was pretty terrible. The only thing I hate worse than the chemo itself is that, at some point, I will likely relapse or develop a new cancer and will go through it all over again. There were many times during chemo when I said I couldn't even finish that cycle, but, I have my guys...and I can't let them hurt again. I will do EVERYTHING to fight to stay with them.

We still haven't done genetic testing on the boys. Our team at OHSU is working on a plan. Turcot's syndrome is so rare that there isn't really a standard of care for cancer screening in kids. Once they come up with a list of suggested screening (assuming 'the child' had Turcot's) and frequency and then weigh it against...well, doing the testing and knowing for sure if either of them inherited my MSH2 deletion. This is, in our opinion, pointless. We know we want to know one way or the other. We've even discussed it with the boys, on their level, of course, and they agree that it's the right thing to do. This is not a terminal disease with no cure. It means a significantly higher risk of certain cancers. Cancers that, caught early, are extremely curable, and caught late, are deadly. Knowledge is power. I would go in to the 'if we'd only known with Hadley', but that's no good. We didn't know, and had we it may have ended the same anyhow. Our story is what it is, not what wish it could have been...

I'm speaking at the Relay For Life in Eugene, Oregon in July. I'm pretty excited/nervous/thrilled/humbled/terrified. :) Yes, I can feel all those thing simultaneously. I've yet to decide exactly what I want to/can/should say to such an amazing group of people. I'm sure that I will find something, though. I'm sure my girl won't let me get behind the mic and flounder, too much. *wink*

As I write this, I keep thinking about how I want people to see our story, our family. After Hadley died I/we withdrew from a lot of relationships. I felt pitied. I just couldn't take it. While I was obviously sad and grieving, I didn't want people to pity me. I didn't want people looking at us and seeing 'the worst case scenario'. This was only intensified when I was diagnosed with cancer, and then found out about the genetic mutation. I don't want people to look at us and feel pity. I want them to look at us and see hope and love and faith. Whatever part of our story lends them those things...that's what I want them to see and dwell on. THAT is what I feel when I remember my sweet Hadley bug, and look at my boys and hear them laughing, and feel The Mister's arm around me after all this time and all the crazy. Yes, there has been tragedy and loss... and more scary times than I like to admit, but those are only elements of our story, not the plot. I refuse to let loss and heartache be our legacy. We've come too far to allow that. I've thought a lot, in the past several months, about what I want my legacy to be and what it IS...what Hadley's legacy is and how she was such a pure spirit that it was always her legacy, she never wavered. What is your legacy? Is it what you want it to be? If not, I encourage you to do work.

If you'd like to keep up with The Mister and the boys and I, feel free to visit us at: www.FoxFamilyFive.blogspot.com or www.ChemoMom.blogspot.com

I'll try to keep them updated through the summer. ;)

With Faith, Hope and Love,
Angela

Thursday, February 10, 2011 11am

We are SHAMROCK-ing in memory of Hadley!!! Our team # is 9500.

You must register by February 25th to participate on our team. :)



Your team number is 9500. Below are some instructions to help you assist your teammates in registering. Please let me know if you have any questions.

Kim


Go to:

http://www.shamrockrunportland.com/

Click on the orange box that says:

CLICK HERE TO REGISTER ONLINE
SHAMROCK HOODED SWEATSHIRTS FOR SALE, TOO


Select category:

Team Option - 15 or more $27.00

Don’t forget to check this box:

I understand and agree to the waiver and release*


JUST CLICK CONTINUE ON THIS PAGE:

If you have a Discount Code, please enter it here:






Fill out all your registration information and don’t forget to put your team number here:

Team Registration Number*
The Team Captain MUST contact Kim Terry at pdqemail@aol.com to receive a special Team Registration Number. This number must be entered by each team member for teams of 15 or more participants. (Children age 12 and younger can be on a Team if the team has at least 15 members who are age 13 or older).


You can also find information at: www.FoxFamilyFive.blogspot.com
or: www.ChemoMom.blogspot.com

Thanks!!!!

Angela

Thursday, February 10, 2011 11am

We are SHAMROCK-ing in memory of Hadley!!! Our team # is 9500.

You must register by February 25th to participate on our team. :)



Your team number is 9500. Below are some instructions to help you assist your teammates in registering. Please let me know if you have any questions.

Kim


Go to:

http://www.shamrockrunportland.com/

Click on the orange box that says:

CLICK HERE TO REGISTER ONLINE
SHAMROCK HOODED SWEATSHIRTS FOR SALE, TOO


Select category:

Team Option - 15 or more $27.00

Don’t forget to check this box:

I understand and agree to the waiver and release*


JUST CLICK CONTINUE ON THIS PAGE:

If you have a Discount Code, please enter it here:






Fill out all your registration information and don’t forget to put your team number here:

Team Registration Number*
The Team Captain MUST contact Kim Terry at pdqemail@aol.com to receive a special Team Registration Number. This number must be entered by each team member for teams of 15 or more participants. (Children age 12 and younger can be on a Team if the team has at least 15 members who are age 13 or older).


You can also find information at: www.FoxFamilyFive.blogspot.com
or: www.ChemoMom.blogspot.com

Thanks!!!!

Angela

Tuesday, April 13, 2010 6pm

Hello,

Yesterday marked 16 months since Hadley died. I never would have thought I would survive this long without her. Not an hour goes by that I don't think of her and long to hear her voice or her laugh or get a big lopsided hug from her. I was her biggest fan, but she was also mine. It hurts so much to know that I will never hear her genuinely joyful voice scream "mommy" again...or watch her run across a room to me, moving in for a huge hug, with her little broken wing hop. I miss her more than words can say. There is no adjective that covers this kind of pain and longing.

Most days are good, though. Most days I am able to remember all the good times and smile and really mean it. Most days I can enjoy my boys and fell truly happy and blessed. There are still those times though, that just require a big fat cry and maybe even a tantrum. I allow myself that because I think it's healthy. Who really knows how you're supposed to respond when you lose a child.

The boys are doing well. They are both getting great grades in school and are really thriving academically. They are bright kids and have made a courageous choice to shine through all they have been through. We started The Doughy Center a couple months back. It is a peer grief support group. So far they have really enjoyed it. Brandon and I have benefitted from it as well. We're so thankful that it exists and so sad that there is a need for it to. All of the children involved in the program have lost a significant person in their life. Usually, this means a parent or sibling. I ask that you keep all the families we've gotten to know in this program in your thoughts and prayers. They are all grieving a child and their children are all grieving for a sibling.

Brandon is still at Station Portland. He is doing well and has gained a lot of responsibility in the last several months. Dividing his time between work and home has to be difficult but, he's making it work. He's been at all our Dougy Center Meetings and manages to 'be there' for the boys and I in a way he's never really been able to before (because of long deployments etc.) I'm so proud of him.

I am in school full time now. I'm working on my pre-req's for an applied sciences/nursing degree. My goal is BSN/RN. While there is a shortage of nurses everywhere getting into an RN program is EXtREMELY competitive. I'll need to get A's in ALL my courses in order to make it in and even then, I may sit on a waiting list for quite some time.

I started out with 13 credits my first term. I really forgot how time consuming school is. Well, maybe I didn't forget, maybe I never really applied myself like I am now. *wink* This term is BIO 112 (which is a combo of BIO 101 and 102 for medical professions), Algebra and a Writing course. I have a personal narrative I just wrote for that class that I plan on posting here but, I still have a few things to edit.

Brandon and I celebrated our 10th wedding anniversary on 4/17/10. We treated ourselves with a trip to Oahu to celebrate. We never went on a honeymoon so it was really fun to finally do that exotic vacation. We really enjoyed ourselves and have actually found ourselves seriously considering asking for any billet on Oahu when rotation time comes around again. Lord knows we could handle 3 years of paradise on the Coast Guard's dime. ;)

In other news my body haas become quite the study in what happens to the mother of a chronically/terminally ill child and/or a grieving mother. I have been diagnosed with Factor V Leiden (thrombophillia) and possibly a lupus like clotting disorder. I have been battling 5 DVT's in my right leg. Coumadin has been quite a blessing and a curse. I love to hate it...but, I shudder to think where I'd be without it. I also have a fairly severe case of anemia. I have little to no Iron store left (measured with a Feretin test) and my CBC's are just scary looking. This has caused shortness of breath, headaches, fatigue, etc. I'm up to 4 iron tablets a day and in the next week or so will find out if I need to start IV therapy or not. A whole host of other weird symptoms have been plaguing me. Nobody really seems to know if they are related or not. For the time being I'm a frequent flier at both my primary docs office and my hematologist's office. Protimes are done a couple times a week so I'm pretty ready to just get my own machine and measure this at home. Anyway, I sound like a big whiner when you compare this to what my Hadley went through...I just feel like we really shouldn't have to deal with anything else. Haven't we endured enough? *sigh*...

This month may be a hard one. It is full of Hadley anniversaries. My best friend's girl is having another heart surgery on 4/20. Please pray that it is successful in giving her a more comfortable life. Pray for her family for peace and love to surround them all.

I hope your Spring is going well. We're certainly eager to see the end of the wintery weather here. A little sunshine does our hearts a world of good. Thanks for stopping by and for continuing to pray for our broken hearts...and especially for helping us keep the memory of our sweet girl alive.

With Faith, Hope and Love,
Angela

Tuesday, January 12, 2010

There really aren't words for what is in my heart and on my mind so bear with me.

Hadley's Pop Pop joined her in heaven on Sunday, January 3rd, 2010. He was a Sheriff's Deputy in Grant County, Wa. He was killed in a one car accident while on duty. Please be praying for my mom, stepbrothers and boys. Please pray for John's (pop pop) family. Please pray for his colleagues, friends and community. He is sorely missed.

Thank you for your love, support and prayers during this awful time.

Google Search for Deputy John Bernard

Kayser's Funeral Home-John M. Bernard

Grant County Memorial Site for Deputy Bernard

Have fun with your Pop Pop sweet girl. We love and miss you both so much.

Saturday, December 12, 2009 Hadley's Angel Birthday.

One year ago today our sweet Hadley left this world. A whole year later I still have no words to adequately describe the loss we feel, the heartache, the loneliness...

Sweet girl.
We love you so much. We miss you every minute of every day. We hope you are having fun and have more than you need. Your brothers would like you to send some snow today. ;) They sure miss you.

Have a good angel day love bug.
Mama.

Wednesday, November 25, 2009

Main Entry: grate·ful
Pronunciation: \ˈgrât-fəl\
Function: adjective

1 a : appreciative of benefits received b : expressing gratitude
2 a : affording pleasure or contentment : pleasing b : pleasing by reason of comfort supplied or discomfort alleviated.




Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace and gratitude.
-Dennis Waitley-



I have sat here and stared at the computer screen for quite some time trying to figure out what to say. Everything that comes out sounds...ugh. So, I'll keep it simple.

Choose to live your life with love, grace and gratitude. Choose happiness. If not for yourself, try it out in memory of Hadley. I think you'll like it. ;)

Happy Thanksgiving friends!

With Faith, HOPE and Love,
Angela

Sunday, October 18, 2009 10pm

Hello all,

I apologize for my absence. The combination of our computer being down, moving, the boys starting school and both Brandon and I working made it really difficult for me to get here to update. The hardest hurdle, though, is my heart. It is so hard to come here. It's hard to update. It's just hard. I have no idea what I'm supposed to say here anymore. I keep it up because I can't bring myself to delete it etc. but I also feel like it's a finished chapter. There isn't anything more to write...except our grief...and that's one thing that we've managed to keep semi private. It's just too raw to share. I hope to, someday/somehow, help other families with our experiences but, right now we're just working on getting through each day.

We celebrated what would have been Hadley's 9th birthday up at the cemetery with some family and friends. We had huge chocolate cupcakes with tons of frosting. The boys insisted on having a 'party' with a princess theme. We released balloons, liberated Ladybugs, talked about Hadley, cried a little laughed a lot and did our best to get through the day. Our girl was such a gift. How could we NOT celebrate on her birthday?

I decided to include a picture of Hadley from 10/19/08. It's so hard for me to believe that this was taken just a year ago. Our sweet girl greeted nearly every day with a smile and a sweet disposition. She was a morning person. On 10/19/08 she had pulled her bed table close enough to get to her markers and drew all over her face. When I woke up she was waiting for me to see. She was giggling like crazy before I even got to her room. She was so funny, so sweet, so loved. We will miss her forever.


Thank you for checking in and for your continued prayers and support. The holidays are bound to be hard this year...every year, I'm sure.

With Faith, Hope and Love,
Angela

Tuesday, July 21, 2009 12:10pm

Hello all,

We have made it past the 7 months mark. It seems impossible that it's been more than a half a year since our girl left this world. It seems like just yesterday she was running around, swimming, dripping fudgesicle all over herself. Last summer feels like yesterday...and a million years ago all at once. I miss my girl more than I could have ever prepared myself for. Her presence in this world was huge. She was such a bright spot. Such a joy. How do you adjust to that kind of a person being gone? I don't have any good answers for that, but I do know that I would be doing Hadley's memory a terrible injustice by wasting my life on sadness and despair. How dare I let the gift of life and health go to waste because of my grief. There's absolutely no way I could do that...not after watching her go through all she did and handle it all with a smile and a belly laugh. Nor could I do that to my boys or my husband. They deserve more than that. They and Hadley keep me going. On the days I can't do it for myself I do it for them. I love them all so much.

Brandon's work schedule is still crazy busy. It looks as though it will be that way for the rest of the summer. I am working about 25 hours a week split into 5 shifts/week. I like my job and I really like having a reason to get out of the house and be productive. I'm still hoping to start school part time in September. I'll be working on my pre req's to apply to an RN program. I'm very excited, nervous and a little overwhelmed just thinking about it, but it's a goal of mine and I am determined to achieve it. =)

The boys are enjoying summer vacation. They are getting ready to head back out to gramma and grampa Foxes for another week. They loved camp and can't wait to go back next summer!!! Thank you Camp Millennium! =) It's hard to believe that in just a few short weeks I'll have a 2nd grader and an Kindergartner. Where did my babies go? Now I have Elementary kids who go to camp for a week and fly unaccompanied to Gramma's house. Time flies.

There's a part of my heart that hurts over this school year. Hadley never got to 2nd grade. She visited school a few times during her 2nd grade year...but that's it. Hadley loved school so much. It truly brought her joy. She loved packing her back pack. She loved carrying her lunch box. She LOVED riding the bus....her friends...all the people there. She loved school. It hurts my heart to start a new school year without her. Over the last week or so the busses have been out either training new drivers or working out their routes etc. There is a 'llittle' bus that drives past our house on a regular basis. Every time I see it I have a moment where I smile and cry at the same time. Hadley loved life. She loved HER life...even with all the trial and pain. She very rarely complained...she loved being alive. I just wonder if I'll ever get past the wondering 'why?'. It's hard watching the boys 'pass her up' so soon after her death. I guess it's par for the course since they're so close in age. It just hurts. *sigh* On the other hand I feel so blessed to have such amazing boys. It truly is miraculous to me to watch them learn new things and grow up. I don't think I will ever be able to take that for granted, not after being Hadley's mom. =)

Our family is looking at moving. It's a long story but, it's just something that may need to happen. We're not certain about the timing or if it's even going to happen at all. I don't know that I'm ready to leave this house...Hadley's room, the place we last held her, laughed with her etc. My head knows it's just a building...my heart is a little attached. This is odd for me, being a military wife who has moved so many times. I am just really struggling with moving to a home Hadley has never lived in. This probably sounds really weird. I don't quite understand it myself, but it is what it is. I can't really do much about how I feel. Please pray for wisdom, peace and guidance in this situation.

Well, I'd better run. I need to pack the boys bags. I think gramma would appreciate my sending clothes with these monkeys...or at least bathing suits and flip flops. =)

Thank you for continuing to check in on and pray for our family.

With Faith, Hope and Love,
Angela

Friday, June 12, 2009 1am

Photo and video editing at www.OneTrueMedia.com

Monday, April 27, 2009 11am

Five years ago today we handed our daughter over to Dr Peter Sun and his team for the first time. We wouldn't see her again for more than 13 hours. Nothing could have prepared us for what we saw when we did. Our sweet girl was black and blue. Our first reality check as to how serious this was. It was a few days before I got to hold my girl again. I remember it very clearly. Exactly how relieved and happy I was to just hold her again. For the first time in a week I felt like we might be ok.

The night before surgery I begged Hadley to stay. I promised her we would help her fight and promised her we wouldn't let the tumor take over...rule her life. We would always allow her to live her way. Hadley did live life her way...and boy did she fight.

I'll never understand...

We love you and miss you sweet girl. SO much.

Mama.

Wednesday, April 1, 2009

Thursday, March 12, 2009 11 am

Three months have passed since our girl left this life. I never could have imagined or prepared for how badly this hurts. I 'see' her everywhere, hear her in people's words and phrases. Everything reminds me of Hadley. Everything. She is so missed.

Be kind to each other.

Angela

Tuesday, February 17, 2009 12:15 PM

Hadley's last days...

This is an account of Hadley's last days on earth. If you don't want to know, stop reading here.

Before I start I'll give a brief background to those who are new to Hadley's story.

Hadley was born on 9-27-00. She was our first baby and our only daughter. She was beautiful and healthy at birth. She loved being alive, people, bubbles, swings, chocolate, roller coasters, letting balloons go, Disney Princesses, all things pink and frilly, Chicken Meat Nuggets from McDonalds, school and riding the bus. Hadley loved nearly everything. She was the most joyful child I have ever known. She was sure of herself and her faith. She was so very excited to go to heaven.

On 4-22-04 Hadley was diagnosed, in the ER, with a very large brain tumor. She was treated for 4 1/2 years with two neurosurgeries and several chemotherapy regimens. She had several surgeries for line placement etc. She also had what seems like a billion MRI's with sedation. Through it all she never lost her love of life and infectious crooked little smile. I'd love to say that we helped her through all the trials but, really, she helped us through. She was amazingly strong and sweet through what must have been hell on earth, at times.

On February 27th, 2008 Hadley had what was supposed to be a routine post chemo MRI. It was anything but. Hadley had developed new tumors on both sides of her brain. For those of you not familiar with brain tumors, this is pretty uncommon in low grade tumors (Hadley's original diagnosis). Even a lot of high grade tumors will 'respect' the midline of the brain. Anyhow, most of our family and friends didn't really understand the gravity of this news. I was fine with that. The less they knew the longer I could live in denial. We did another MRI a few months later and things were even worse. At that point we, with her medical team, decided to end treatment. Hadley's terminal diagnosis was Bilateral GBM (Glioblastoma Multiforme-a grade 4 highly malignant tumor).

Hadley entered hospice care on September 2nd, 2008. After a fast decline we were warned that she may not make it to her 8th birthday (9/27/08). She amazed us all and hung on until 12/12/08. The following is an account of her last days.


On December 4th, a cold turned into double pneumonia (in both lungs). On Tuesday, December 9th Hadley's fever became hard to control and her breathing was extremely labored. We started medicating every 2 hours (around the clock) to keep her peaceful and comfortable. Hadley declined much more quickly than she had previously. On December 11th Brandon popped his head in her room first thing in the morning. He told her good morning and asked her how she was feeling. She smiled and said "great". No matter how bad things got this was always Hadley's answer. The truth was, her breathing had become very loud and labored and alter in the day she would lose alertness. Her coloring was really dusky. We knew she was declining but, nothing could have prepared us for the news her hospice news gave us on Thursday, December 11th. As soon as her nurse saw her she started crying. She did a little exam and tried to talk to Hadley. Brandon was out in the front room with his mom and our friend Mollie. The nurse told me that we probably had about 12 hours left with our girl. Brandon finally came in and she told him, and then we told Brenda and Mollie. I called my mom and my dad...and then I just sat and rocked my girl. Brenda, Brandon's mom, went and got the boys from school. They came home and we explained to them that Hadley was getting ready to go to heaven. Keegan kissed her goodbye and told her that he loved her and left the room. Liam wanted to snuggle with us a little more. I can't remember my thoughts...I just remember rocking her and wishing that I could turn the clock back years and years. I rocked and whispered in her ear about how much I love her, how wonderful heaven would be and that I would miss her forever. I told her it was ok to go and not to worry if we cried. I told her that she is my favorite person ever and I cried and cried and cried. Keegan had a choir performance at The Grotto that night. He really wanted to go and stressed that it was very important to him that I be there. So, I left Hadley and Brandon and went to Keegan's performance. I was only gone for about an hour but, it felt like an eternity. Several people asked how Hadley was doing and I couldn't even answer. I tried to smile and enjoy myself, for Keegan, but I was hurting so much inside. I got home and Brandon and Hadley were in the rocking chair where I left them. Hadley hadn't said a word for hours. The nurse told us she was in a coma. We changed her and cleaned her up a little. We decided to put her in bed so that Brandon and I could each spend time with her without disturbing her. While we were changing her she started trying to talk. Her eyes were still closed and we could barely make out what she was saying. She was saying "movie". Brandon asked her if she wanted a movie and she shook her head a little. She wasn't able to get enough out to tell us which movie she wanted. But, her favorite had been Enchanted. Brandon asked her if she wanted to watch Enchanted and she shook her head again. We turned on the movie and I got in bed with her. Brandon laid in the recliner next to her bed and held her hand. We both fell asleep at some point before midnight. Her breathing was hard to hear, emotionally. It was just so hard to hear her struggling. At 3:30 am I woke up in a panic. I didn't hear anything. I refused to believe she was gone. I laid there waiting for a breath. It never came. I fell apart. I don't even remember what I said or how I woke Brandon. I don't remember anything except the overwhelming heart break and surprising sense of shock. You wouldn't think that we'd be shocked but, we were. So shocked. We cried, and cried...and then realized we had to figure out how to handle things with the boys...

We decided to wake them up and tell them. By this time it was around 4 am. We woke the boys and brought them upstairs. We told them that Hadley had gone to heaven and asked them if they wanted to say goodbye. Keegan wanted to give her a kiss. Liam didn't want to go in her room. At some point I had called hospice to let them know and they had notified the funeral home for us. They showed up around 5 am. We didn't want to wait until the sun was up because we knew how blue she would be. I didn't want the boys remembering her like that. When the funeral home was leaving the house with her I couldn't hold it together. I couldn't just calmly let them take my girl, this huge part of my heart. None of this could be happening. Not for real. Not after how hard we fought...not to my sweet girl. But it had. I don't remember a lot from that day. I remember a lot of people coming through the house. A lot of food, a lot of hugs and so much love.

The next day was Hadley's Gift. Several people had been gathering for months planning this celebration of Hadley and fundraiser. I don't know how I went and got through it but I did. It felt like the right thing to do. I wanted to be with my girl and couldn't. Being with people remembering and honoring her was the best I could do. There was so much love and so many tears there. None of us could have ever guessed that she would die just the day before this event that had been being planned for months.

Her funeral was on December 18th. It was beautiful. She was lovely. Even though we opted to have Hadley cremated we chose to have an open casket visitation. It was a hard choice for us but, I'm glad we chose it. I think it was healing for a lot of us. She looked absolutely beautiful and healthy. We all piled things in the casket that she would have loved flowers, chocolate, a handmade guitar pick from grampa and even a McNuggets box from miss Angela. The boys made her build-a-bears and put them in with her. She was so loved. So very loved.

I miss my sweet girl every minute of every day. My biggest fear used to be losing her. Now, it's forgetting her sweet voice or all of her funny ways. Her Hadley-isms are still heard in our home and amongst our friends and family members. She left such a big mark on this world. Her love was bigger than life and so was she. Heaven is surely a spunkier place with her there.

We love you sweet girl.

Wednesday, February 11, 2009 9:45pm

Hello friends,

Tomorrow marks two months since I last held my girl. Two whole months. I can't quite describe how I am doing. It's not that it changes drastically from one day, one hour or one minute to the next. It's more like emotional ADD. I have all of these feelings from one extreme to another all of the time. In the same moment I can be both extremely grateful and overcome with heartache and sadness. In the same hour I can have a hard time coming to grips with the reality that my girl is really gone and also feeling that it's been an eternity since I heard her laugh, saw her crooked little smile, held her in my arms or heard her sweet voice. It feels like it's been ages, it feels like she's still not gone. None of it makes any sense in my heart.

As time goes on I am able to remember the better times more and more. This is both a blessing and a curse. In one way it is wonderful because I know without a doubt that she was the most joyful and loved little girl in all the world. On the other hand it hurts my heart because remembering the good times make it even harder to reconcile the fact that she 'had' to go. In the last weeks of her life she was so uncomfortable and sick. It seemed like a blessing of sorts...an act of mercy...that she got to be healed in heaven. Now, remembering the good times it doesn't make any sense at all.

I guess no matter how you look at it, try to justify it, try to make it all make sense or fit into some greater plan...it just won't. It's beyond me. In the same moment I thank God for her and the honor of being her Mama and wonder why and how He could bless us with a child like her and then make us say goodbye so soon, or at all. Hadley brightened everybody's lives. It doesn't make any sense for her to not be here. No sense at all.

I miss her. So very much. I ache for her. I will never be the same because she was such a huge part of my life. I refuse to let that be a negative thing. I insist on being 'more' because of her. I have resigned myself to the fact that I will have broken pieces of my heart and soul but, I will use that broken and wounded part of myself to spread some of what God has taught us through Hadley's life. I just have to.

The boys are doing well. Keegan is really thriving at school. Liam is finally feeling comfortable in his routine again. They both have their 'moments' but, for the most part they handle their feelings in very healthy ways. Keegan draws a lot of pictures and writes letters to Hadley. He puts them on the fridge for her. Liam likes to talk about how funny Hadley was. He likes to hear other people's funny stories too. Hadley and Liam were a lot alike in that way. They liked laughing and making people laugh and being silly together. Keegan was always more nurturing toward her. He was more concerned with caring for her than being entertained etc. They had plenty of fun together but Keegan has just always had a strong sense of responsibility for her. I've worried about him because of that. But, I think he understands, as much as he can, that he couldn't make her owies go away and that everything we did made her as happy and comfortable as she could have been.

Brandon is doing well. He is still working quite a bit. He's really motivated to get 'caught up' and do his job well. I'm very proud of him. I miss him. I had gotten used to having him here so much...and now he's rarely here. But, like I've said before, I can't complain. I am too thankful that he got to spend so much time with our girl. The Coast Guard was truly gracious to our family in so many ways.

Well, I should wrap this up now. Before I do, I have a few things to share/ask:

**Just a reminder that we have a family blog at: http://www.foxfamilyfive.blogspot.com. I try to keep it up to date. =)

**If you are running/walking in the shamrock run please remember to register. (Details are directly above this journal)

**If you are participating in the Shamrock Run on Hadley's team please shoot me an email at: HadleysGift@yahoo.com I'm working on putting together a T-shirt and need an idea of how many/what sizes I need. =)

*****Last but not least. My friend, Shauna Wagner, is participating in the Relay For Life in Hadley's memory. If you are able, please support her.
http://main.acsevents.org/site/TR/RelayForLife/RFLFY09CA?px=8884509&pg=personal&fr_id=13745*****

Thank you for all your love and support. It really does mean so much to us.

Have a Happy Valentine's day.

With Faith, Hope and Love,
Angela

Tuesday, January 27, 2009 9:20am

Hello,

I've taken on the task of getting Childhood Cancer Awareness license plates in the state of Oregon. It's a little intimidating but, I believe I can accomplish this. The first step is getting at least a thousand signatures expressing interest in the specialty plates. The second step is raising $10,000 to cover the up front cost of the plates. This will be refunded (plus proceeds) to benefit Pediatric cancer research and support. So, I am asking for your help. If you have a car registered in Oregon please sign my petition:

Thursday, January 22, 2009 9am

Hello all,

We're still here, surviving. Some days, some moments are harder than others. Overall we are doing as well as can be expected though. I still get 'panicky' over things. Usually it's someone making too much noise near Hadley's room or pulling out of the Fred Meyer parking lot and realizing I haven't filled Hadley's prescriptions or getting halfway to the boy's school and thinking I left Hadley at home alone. You'd think after nearly a month and a half that would stop but, I guess I've been doing this for so long that it's a part of who I am now. While it's heartbreaking to experience those moments it is also comforting in a way. It means I'm not forgetting. I can't bear the thought that someday I may forget her smile, her laugh, her hugs, her sassiness any part of her. Any 'little' part.

Brandon is back at work full time (and then some). The station is really buckling down to prepare for summer and for losing all the guys who will be rotating. It's crunch time so we're not seeing much of him these days. While it may seem tough, in the moment, I'm rather grateful that he's working this much now and was able to spend so much time with Hadley instead of the other way around.

The boys are doing Ok. Keegan seems to really be blossoming. It seems as though the huge amount of stress he was under has lifted a bit. He's really thriving at school now. He seems a little less distracted and is really starting to excel again, like the Keegan we know. While thinking about it I realized that Hadley dying and going to heaven is probably quite a bit less confusing and stressful for him than her illness, especially those last few months. We, as adults, weren't sure how she would be doing from day to day...I can't imagine the stress that would put on a 6 year old. Poor buddy. While he misses his sister terribly, he KNOWS where she is and how she is doing now. I would imagine it's a bit of a relief.

Liam is having a bit of a hard time. He really doesn't like being 'alone'. He insists that someone accompany him to his room, upstairs to get a glass of water etc. Yesterday he actually cried real tears not wanting me to leave him at school. This boy LOVES school. I'm sure he has to be confused and worried and sad. Again, I just can't imagine going through this as a preschooler. It just breaks my mommy heart. I know, in time, their broken hearts will heal a bit...it's just the getting there.

We are working hard to go on living and enjoying life. Our lives are a gift and 'wasting' them won't do Hadley any good. We cry when we need to, laugh when we can and snuggle each other a lot. It makes my heart happy to remember my girl and share stories about things she said, did, sang etc. I miss her so much. SO much. I have no doubt that there is a piece of me that will be broken forever. I also have no doubt that the broken piece will make me a better person. I pray every day that everyone who has a broken piece because of Hadley will choose the same...especially Keegan and Liam. They are such sweet boys and I thank God for them every day.

Thank you for continuing to check in on and pray for our family. It means so much to us.

With Faith, Hope and Love,
Angela

Thursday, January 15, 2009 9:10pm

I went grocery shopping today. I hit Trader Joes and they had flowers I just couldn't pass up. I bought their lucky ladybug bouquet and took them up to my girl. This is my first visit to the cemetery since we went there for Hadley's interment. I don't know why I thought it was a good idea to go by myself. I suppose it was productive to get a good healthy cry out...but,the 20 minutes in the car trying to pull it together so I could drive home was a bit much. The groundskeepers were all in the area cleaning up while I was there. I'm sure they've seen their fair share of mourning but, I'm sure that they were wondering what institution I escaped from.

As I stood there, staring at my daughter's niche in total disbelief, gun shots started booming...then I heard Taps playing. A hero was being laid to rest. Being in that cemetery is an overwhelming experience. Not only is my sweet baby girl there but, you can't help but feel humbled and grateful by all the heroes who sacrificed so much for our country.

I also wanted to add that the reason Brandon's name is on the niche marker is that he is her 'sponsor'. She is in Willamette National cemetery because he is active duty military. Each veteran/active duty member is entitled to burial and the burial of one 'dependent' in a national cemetery. So, in theory, he would be buried there with her...and he is the reason she is able to be buried there. So, there's the explanation for those that may have wondered.

Thank you for your thoughts and prayers, love and support. I truly don't know how we'd make it through without every person God has placed in our lives.

Saturday, January 12, 2009 10:40pm

One Month. One whole month without our sweet girl. On one hand I am amazed that we survived it, on the other I can't help but ask where it went. What a crazy busy month it's been, especially in comparison to the days of just lounging about with Hadley. Running to the kitchen and back for cereal, juice, ensure...whatever her little heart (or tummy desired). I miss her so very much. SO much.

For one whole month now I have walked past her bedroom door in the morning and cried because she's not there to greet me and tell me how great she's doing. For one whole month I haven't had her tell me once that I am beautiful (at least 5 times a day). For one whole month I have purposely avoided the grocery store at all cost because I can't bear to not buy her favorite foods...but, I can't bear TO buy them. For one whole month I have panicked at least once a day that I have forgotten Hadley's meds or wheel chair or even Hadley herself. For one whole month I have not held my girl and hoped for a miracle of perfect healing...I know that she has that now. I will miss her every day for the rest of my life but, I am so happy for her that she is whole, perfect, happy, free of this troubling world...I am so thankful....and SO heartbroken.

Baby bug,
Mommy misses you sweet girl. If you hear me cry, don't worry. I'll be fine. I just miss you so much. You have fun...you deserve it so much. I love you my sweet stinky face...forever and ever. I hope you know how much you were loved. Not just by Daddy and the boys and I but, by everyone who knew you...and many that didn't. Thank you for teaching us all so much about faith, hope and love sweet girl. You will always be Mama's hero. I love you and can hardly wait to see you again. Have lots of fun.
Love,
Mama


Thank you for continuing to pray for our family.

With Faith, Hope and Love,
Angela


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



Shamrock Run Info:

Group Name: Hadley's Gift

Group Leader: Angela Fox

HOW TO REGISTER AS A PART OF A GROUP
To receive the $4 discount for registering as a group of 4 or more participants age 13 or older, one person must be designated as the "Group Leader." That person should register first and list the "GROUP NAME" and "GROUP LEADER" when prompted.

Both the GROUP NAME and GROUP LEADER must be given to all members of the group so they can complete their registration by providing that information when prompted.

Register Here: https://www.signmeup.com/site/reg/register.aspx?fid=NM2V8K7


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello,

My friend,Michelle, just sparked an idea. =) (Uh oh). =)

Exactly two years ago on March 15th Hadley was swallowing her last chemo pills. On March 17th (mine and Brandon's wedding anniversary) we had a "no more chemo" party. Every year around St Patrick's day the Shamrock Run is held. I'm not sure if the beneficiary is the same every year or not but, this year it benefits the Doernbecher foundation. Doernbecher (for those of you who aren't local) is the Children's Hospital associated with Oregon Health Sciences University. This year the run is being held on Sunday, March 15th. You see where I'm going with this? =) hee hee.

Hadley was all about pushing herself to achieve what she wanted to accomplish. She honestly didn't know the meaning of the word "can't". There are a few options for the length of the run so most people will find something that fits (including a walking course). I'd like to challenge you to push yourself and join us! If you are a runner, awesome! If you aren't, you'll be in good company. =) This will be my first 5k. Scratch that, my first 'race' ever.

Check out the site and let me know if you'd be interested in joining team Hadley's Gift! http://www.shamrockrunportland.com/

I'm going back to the site now to figure out how to register a team and the details of registering as a team. Drop me a line at: HadleysGift@yahoo.com if you're interested in joining us.

Thanks everyone.

Angela

Wednesday, January 7, 2009 6:30pm

My sweet boy had an ophthalmology appointment today. I am SO happy to report that, with his glasses, his vision is improving and his eyes are 'working' more equally. YAY! This means no eye patch and puts our minds at ease even more that Keegan's eye problems are "just" eye problems. =) Furthermore, unless we see any new problems, he doesn't need to be seen again for a year.

Thank you for your thoughts and prayers for our sweet Keegan.


Also, don't forget our family blog: www.FoxFamilyFive.blogspot.com

With Faith, Hope and Love,
Angela

Monday, January 5, 2009 6:30 PM

Hello,

I know a lot of people were concerned and praying today so I figured I would update. =) Brandon decided to stay home with me today...so the boys went back to school but, I still had Brandon here with me. I suspect he's a little nervous going off to work and leaving me here alone. I know that I am not 'back to myself' but, I am doing well. I miss my girl so much...but, I also know that I need to be 'here'...not surviving but, LIVING. My guys need me. I need to find a way to truly enjoy life. I may feel pretty old some days but, I'm not. I still have a lot of life in front of me. I can't, won't, spend it miserable. Hadley would be really upset with me.

Having said all that, I do have my moments. I have cried every single day since my girl left this world. My heart aches for her...to hear her, to hug her, to smell her, to laugh with her, to just 'be' with her. I know I will be again someday but, for now I have important work to do here.

Thank you for continuing to show your love and support for our family. Your prayers are so important to us.

With faith, hope and love,
Angela

Thursday, January 1, 2009 2pm

Hello,

We are home from Idaho. Our trip home was remarkably easier than our trip out there but, I'll save that story for another day. =) We had a good time. Lots of smiles,lots of tears, lots of memories shared and new ones made. It was good. I'm glad we decided to go.

We drove home Tuesday and Wednesday morning we had our sweet girl's interment. She is up at Willamette National Cemetery now. It is beautiful and well kept. I'm so thankful we have that 'resource' because of Brandon's service. It is comforting to know that even when our Coast Guard journey takes us on our next several adventures Hadley's remains will be in beautiful and well cared for place. We are also thankful that no matter where we PCS to next there will always be people who love Hadley to drop by and leave flowers etc. I can't imagine how my heart will ache when we have to leave Portland and leave her behind. One day at a time, though...right?!?

I will be going back up to the cemetery some time next week to take flowers etc. We didn't take any to the interment because, being a military cemetery, we were sure they'd have a policy on flowers etc. And they do. I'll post the whole thing at some point...but, basically live and artificial flowers are allowed. No glass vases. No balloons, pinwheels etc. It appeared that small american flags are acceptable, though. There is no vase etc available on the niches so flowers etc have to be laid at the foot of the niche or somehow attached to the niche face. I saw a few people use string etc but, if it looks bad they will remove it.

She, of course, has a temporary marker for now. I'll be glad when the permanent one is in. We forgot to ask how long it takes. It just seems so sad to just have the paper there with her name on it. The permanent markers have to be very uniform but, they are pretty and tasteful. We had 22 characters in 2 lines to personalize her marker. Not exactly ideal but I think we did well with "Lived and Loved Greatly". Anything else we came up with seemed so limiting. How do you sum somebody's life and legacy up in 22 characters? Hadley lived for just 8 years and her legacy is huge. I can only imagine that many of the folks who have filled out that form before us have struggled with this as well.

Because National Cemeteries are available only to veterans and their dependents Hadley is buried among heroes. I guess it is fitting that she be there...she was quite a warrior after all. I choose to believe that she is the sweetest little warrior there, though. My mind did wander a bit however, wondering how many other children are buried there. How many active duty service members have lost children and laid them to rest there before us. How did they handle moving to their next duty station? How did their marriages and other children handle the stress of child loss and military life? I suppose it's better I don't know.

The boys go back to school on Monday. It will be the first time they are away from Brandon and I since Hadley died. I think they'll be fine. I'm not so sure about me. =) I'll be fine...it'll just be rough having them gone all day. One more step in defining our new 'normal'. This is a 'normal' I don't really desire...but, I know it's healthy and right. I know we have to keep moving through the pain.

Speaking of...I can't believe it's 2009. I can't believe that just a few short weeks after our girl left this earth we are beginning a year that my girl has never lived in. I'm sure that most things will feel bittersweet for quite some time...maybe forever. Everything feels significant right now. The date, the year, what she was doing on this day in previous years...I can't really explain it.

I should probably close now. Please continue to pray for us as we learn to live with this grief and miss our sweet bug. Please pray for our families and friends. There are a lot of children who have been profoundly affected by Hadley's death. Pray for the children at Columbia Christian who have been praying and making cards for Hadley for months. Please pray for all the peds brain tumor warriors who are still fighting...and for those who have found their cure in heaven. Please pray for their families and support systems. We are blessed to have amazing people, church family, 'employer' (chain of command) etc around us...but, that's not always the case.


About 20 hours before Hadley died Brandon peeked in her room to see if she was awake. When she was he told her 'good morning' and asked how she was feeling. She was very very sick, it was obvious...but, do you know what she said? "Good Morning Daddy. I'm great!" She said it with a smile on her face. She wasn't just saying it...she WAS great. Hadley was ALWAYS great. =) She chose it... Choose love this year. Don't let fear rule your heart. Welcome the journey of life with the awe and wonder of a child. Love the people around you. Choose to be positive. Choose love. Make this year a great one, friends.


With Faith, Hope and Love,
Angela

Saturday, December 27, 2008 2:15pm GMT

Brian Simmon's Sermon 'inspired by' Hadley's Life (Quick Time)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hadley's Obituary

Hadley's Obituary in The Outlook

Hello,

I just wanted to journal a dream that Keegan had. Friday morning (12/26/08~exactly two weeks from Hadley's passing) Keegan woke with tons of energy and as happy as could be. So much so that Brenda, Brandon's mom, took note of it. Keegan is usually just like me in the mornings. Reluctant to wake, grumpy about leaving his snuggly bed and slow to fully join the chaos of the morning. Friday morning was noticably different. I got up after Brandon and the boys and Keegan ran accross the room to me and proudly boasted "MOM, I had a dream about Hadley! She was standing right in front of me and was smiling. She said "Hi!" and told me to tell everybody "hi" for her. She was SO happy...and STANDING!" =) He was so pleased with this dream and seemed truly relieved to see his sister feeling so well. My sweet boy waited patiently for me to wake up so he could tell me first. I think he knew how much I needed/wanted to know that she had visited someone. I am so grateful.

Thank you sweet girl for letting your brother know you made it to heaven and are doing well. He loves you so much and has worried about you since you left. We all love and miss you SO much. Mama can't wait to hug you and kiss your sweet, stinky face again. Have fun sweet girl...you deserve it more than anyone I know.

Mama

Thursday, December 25, 2008. 9:40pm GMT

Merry Christmas,

Today was...well, it was. I am so thankful for my boys, they keep me going. We all miss our girl so much. Really, there are no words for the heartache we are feeling. Hadley was such a huge presence in our family. She brought so much laughter, fun and love to our daily lives. She was so animated and fun. Everything seems so quiet and subdued now that she isn't here. We all smiled and played Christmas but really I just would have prefered to sleep through it. My boys need me though...so, one foot in front of the other and all that jazz.

The initial physical shock is wearing off and the 'real' grief is setting in. Tomorrow will be two weeks since I held my girl last. Through the past several years parents who have lost their children have warned me that you can't prepare for the loss of a child. No matter how realistic you are and how much time you havevto say your goodbyes, it will never prepare you. I didn't understand until the moment my girl was gone. We knew it was coming. We knew she wouldn't make it through the night, yet the moment I woke and realized she had stopped breathing I was totally and completely shocked. I couldn't believe she was gone. I never thought I'd be the mom who begged God to give her back. I thought I was strong and unselfishness enough to let her go...let her be healed. I wasn't. I'm not. I keep catching myself begging for a few more moments, or even just to see her whole again...just for a minute. I tell myself that it will help me go on. Help ease my heart. Help me be able to keep on living. But, really, I don't think anything will ease this. *sigh*

I miss her so much. We all miss her so much. Please keep praying for us all.

With Faith, Hope and Love,
Angela and family

Saturday, December 20, 2008 12:30PM

Hello,

I have tried and tried to figure out what I would say when I wrote 'this' entry...there just still aren't any words. I'm still having a hard time sorting out my feelings. I miss my girl SO much. It's the little things, like tip toeing past her bedroom door on the hardwood floors so I don't wake her...and the big things, like trying to imagine Christmas without her. Hadley was the GREATEST gift opener. No matter what was in the package she was opening she was SO excited and SO thankful for it. She loved opening presents. It's Tuesday morning when the garbage truck comes and not hearing her yell that they are making too much noise. It's not hearing her super excited about the snow or the sunshine. It's when guests walk in the door and I can still hear her greeting them with such genuine joy. I love her so much. My heart aches because she is all around us all the time...and because she is nowhere to be found. I will miss her every single day for the rest of my life.

The boys are doing 'well'. They are amazing little guys. Keegan is sad when he needs to be and is finding good outlets for his feelings. He is making cards and writing letters to Hadley. He cries when he needs to and, so far, has been sharing his feelings with us. Liam is a little less in tune with the sadness and anger. He tries to lighten the mood and make us all laugh when anyone starts to cry. He has a lot of emotion that he doesn't understand or know how to channel and it seeps out at the most unexpected times. We are doing our best to help him along. They both love their sister so much. My heart hurts for them, so much. Their grief will be a continual process for many years as they grow and mature and deal with it at different developmental stages. I pray that they will carry this experience with them and choose to become better men because of it. I hope you will join me in that prayer.

Hadley's service was beautiful...absolutely beautiful. She was absolutely beautiful. I'll share more details later...

We're headed to Idaho for Christmas. Thank you for all your prayers.

With Faith, Hope and Love,
Angela and Family

Friday, December 12, 2008

Hadley's funeral services have been planned.


Viewing:
Thursday, December 18th
3-7pm
Gresham Memorial Chapel
257 SE Roberts
Gresham, OR 97080
Phone: 503-618-8176


Funeral:
Friday, December 19th
11am

Greater Gresham Baptist Church
3848 NE Division Street
Gresham, Oregon 97030
Telephone: 503-667-1515
FAX: 503-667-9905

Reception Immediately Following. Flowers can be sent to the funeral home and will be transported to the church for the service. If you wish donations can be made in Hadley's Memory to your favorite charity or one of the following:

Pediatric Brain Tumor Foundation

Make A Wish of Oregon

Children's Cancer Association


Pediatric Brain Tumor Consortium


Thank you for your love and support during this incredibly difficult time. I'll write more later in the week.

With Faith, Hope and Love,
Angela Fox


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~














It is with a broken heart that I share with all of you that at approximately 3:30am Hadley earned her Angel Wings. Mommy and Daddy were with her as she left this earth for her Eternal home free from pain, chemo, and suffering. I can only imagine that Hadley is spinning in circles singing songs of joy this morning.

Please keep the Fox family in your thoughts and prayers.

With Love.....and Hope,
Angela Keane
Angela's Best Friend

Tuesday, December 9, 2008 6:30pm

Hospice came today. Hadley has been running a 104 fever most of the day. We have been able to get it down to 102 with several hours of ibuprofen every 4 hours. She's had a lot of difficulty breathing as well. Her nurse said her lungs sound much worse than they did on Thursday. So, we're to continue giving ibuprofen every four hours and have add oxycodone every two hours to help ease her breathing difficulty. This is all around the clock. So, if you see me looking a bit like a zombie any time soon don't worry. I'm just sleep deprived.

Thank you for continuing to pray for our girl.

With faith, hope and love,
Angela

Sunday, December 7, 2008 2:30pm

Hello,

Hadley is, overall, about the same as she has been. Her wheezing is more noticeable and more constant. She has times where she is struggling to breathe but, most of the time she seems about the same. She woke me at about 3 am trying to cough and struggling to breathe. It got to the point where I was about to go in and wake Brandon because I really wasn't sure she was going to be able to get another real breath but, she finally did get settled down and seemed back to her 'new' baseline when she woke up this morning. She's fluctuating between running a fever and being pretty cold. She's sleeping most of the time but, is able to stay awake for a bit at a time. When she's ready to rest though, she can fall asleep just about anywhere with any noise level. She just gets so exhausted.

We were able to go to a Candlelighters event at Cascade College yesterday. They call it Candy Cane Lane. They had a Santa, crafts, music, snacks and activities for the kids. They even had a time for all the parents to go and choose a gift for each of their children and then had volunteers wrapping them. We chose a Gabriella Barbie (from High School Musical) for Hadley and Hot Wheels things for the boys. They had a huge variety of things for kids of all different ages. It was a very sweet and generous thing to offer. We all had a lot of fun. Hadley stayed awake through about half or maybe a little less of it. It was a nice outing for us but, it totally exhausted our poor girl.

After that I sent Daddy and G'pa and the boys to get a Christmas tree. They chose a great one and we got it all set up and pretty. After dinner we watched Polar Express. Hadley had finally woken up so I carried her downstairs to try and watch it with us. She was still really sleepy and fell asleep a few minutes in but, I think she really liked getting to come down and hang out.

So, I guess I don't really know how to answer the "How's Hadley doing?" question. She's not getting worse rapidly. But the pneumonia etc is getting worse. It was really difficult watching her struggle to breathe last night. Really hard. I have known that was coming...but, I don't think anything can prepare you for it. I pray even harder now that her passing is peaceful and not scary for her. As terrified as I was I can't imagine how she must have felt. Poor girl.

We received a very special gift yesterday. A huge box arrived while we were in the middle of decorating our tree. A group of Coast Guard Spouses, our Coastie Chicks, all put their talents together and made three beautiful quilts for our family. Keegan and Liam each have their own and then there is one for Brandon and Hadley and I. They have blocks of photos and loving messages and all kinds of sweet cuteness. A lot of women took the time to make squares for these quilts. My friend, Jori, put them all togther and did an AMAZING job. We will truly cherish them for ever and ever. Thank you Chicks, from the bottom of my heart. Especially for including the boys in this project. They felt so special and were so proud of their quilts. I know they will grow more and more important to them as they grow up without their sweet sister. Thank you. =)

Thank you for your thoughts and prayers.

With faith, hope and love,
Angela

Thursday, December 4, 2008 4:45pm

Before I write I am taking a deep breath, or ten.

I knew the moment I heard Hadley cough, about two weeks ago, that we were in trouble. This cough is nasty for a healthy person, for a person in Hadley's shape it's...well, it's not good. My instincts were right...they usually are.

Hadley's hospice service doctor visited today. She has Pneumonia in both lungs. Her fever and GI symptoms started Tuesday night so I'm assuming that her cough finally got the best of her around that time. We discussed all of our treatment options and Brandon and I agree that keeping her comfortable is what is best for her. At this point we are continuing her 'usual' meds and giving her Tylenol for the fever. The hospice doctor said "everyone has their way out...and this is Hadley's." I couldn't agree more. She has been in pain, uncomfortable and anxious for the last two weeks. She has asked to go to heaven numerous times. I have actually prayed for her to find her way home. This may sound odd but, I wholeheartedly believe that this is an act of mercy by a God who loves her even more than I do. Wether that's the truth or what I have to tell myself to survive this doesn't matter. It's what I believe. I don't know all the answers...I don't even claim to know what questions need to be asked in a situation like this. Children aren't supposed to get sick...they surely aren't supposed to die. I will never claim that this is ok or justified for any reason but, when you see your child suffer like we have you have to find a place in your heart that is selfless enough to at least acknowledge what is in your child's best interest. Even if that means choosing heartbreak for yourself.

Please pray for our girl's comfort.


Thank you for loving our girl and continuing to keep us all in your thoughts and prayers.

With Faith, Hope and Love,
Angela

Tuesday, December 2, 2008 6:45pm

Hadley's hospice nurse visited today. Amazingly, her lungs are still clear. =) You'd seriously never know it by listening to her...but, they are. There's the good news.

The bad news is that Hadley spiked a fever last night. I thought it was related to the junky cough she's had and gave her some Tylenol. Last night was bath night so I carried her in and put her in the tub. I was lying her down and felt a big clump of something in her hair on the side of her head. It's toward the back on the left side of her head. Anyway, after examining further I realized the 'stuff' was some sort of discharge and that she had a big raw spot. (sorry for the TMI) I called Brandon in to look at it and his first thought was exactly what mine was. Pressure Sore. =( I examined the rest of her body and found a few 'red marks' where she obviously usually rests on. I continued with the Tylenol and put some Neosporin on it. When the nurse came today she wasn't 100hat it is, in fact, a pressure sore. She's going to come back with the doctor on Thursday to look at it again. Until then we're to continue on as we have been.

Our poor girl has been sleeping pretty much non stop. She's pleasant enough when we wake her for care etc. But she is tired and not feeling well. She's having a lot of seizures. This is an expected result of disease progression but, could also be caused by the infection on her head and the cough. She asked for McDonald's tonight and then didn't eat a single bite. She has been hanging on to the same nugget since about 4:15 without even taking a nibble. Is it wrong that her comfort object is a McNugget? *hee hee* You have to laugh, right?!?

Please continue praying for our girl.

With Faith, Hope and Love,
Angela

Sunday, November 30, 2008 1:30pm

Hello,

On Friday Hadley got a special treat. =) Hannah Dalzell and two of her friends dressed up and came and sang princess songs to Hadley. Hadley loved it...but, was pretty mellow throughout.

I'm adding a video (you'll have to pause the music player above). If you listen VERY closely you'll hear Hadley say "That was beautiful!" after the first song. =)
Thank you girls for taking time out of your holiday breaks to come and sing to our princess. You're truly earth angels. =)



Have a great week.

With Faith, Hope and Love,
Angela

Thursday, November 27, 2008 8pm

Tuesday, November 25, 2008 Noon

Hello All,

Thank you for all your thoughts and prayers. We are still battling this nasty cough. Brandon and the boys have had it for weeks and Hadley and I have had it for almost a week. I'm starting to feel a little bit better. I still have a really nasty cough but I don't feel like sleeping all day every day anymore. Hadley isn't doing as well as I am. She is still really junky and quite tired. I finally had to wake her this morning around 10:30 to change her and give her meds. She was talking to me a bit but, couldn't hold her eyes open or really carry on conversation. She was back asleep before I even got her situated. I know she really doesn't feel well because we moved her back into her bed and she didn't put up a fight. She's been wanting to stay in her chair, which I think has a lot to do with her wanting to try and stay awake. Please pray for her comfort. We seem to have her pain under control but it's kind of a constant 'battle' to stay on top of it while not 'over-medicating'.

Thank you so much for your love and support in these crazy times.

With Faith, Hope and Love,
Angela

Friday, November 21, 2008 4pm

Hello all,

Hadley has caught the creeping cough-y crud that Brandon and the boys have had for several weeks now. Our hospice nurse came today and, thankfully, her lungs are still clear. This cough is nasty (I came down with it yesterday too) so I'm pretty worried about Hadley having it. =( She feels so cruddy. Poor dolly.

Please keep praying for our girl.

Monday, November 17, 2008 7pm

Hi all,

If you missed Liam's birthday update check the journal history. =) His party went well today. I'll try and get pics up tomorrow.

Keegan's appointment went VERY well...ok, so not really...but, better than what we were expecting. He has a fairly severe case of astigmatism in both eyes. The ophthalmologist confirmed that his right eye is much more affected than the left. Apparently when you have one eye 'stronger' than the other sometimes the brain starts 'ignoring' input from the weaker eye. So, we go back in 6 weeks (giving him some time to get his glasses and wear them for several weeks) and then re-check his vision with his glasses. Even with the corrective lenses, in the office, she could only correct his vision to about 20/40. If that has improved at the re-check then we continue on with the glasses as planned. If it hasn't then the plan is to patch his left eye (the stronger eye) to 'force' the brain into communicating with his right eye again (and continue wearing the glasses). His optic nerves looked nice and healthy and no nystagmus (abnormal eye movements). Woo hoo. So, thank you for all the prayers. =) Please continue to pray that these glasses help Keegan out. Poor kid.

Hadley had a rough day. She was very emotional and in a bit of pain (even after her regular pain med doses). We've had to add an afternoon dose of oxycontin so she's now on 15mg 3 times a day. Today she was still in pain between her am and noontime doses so we had to giver her 5 mg of Oxycodone. She finally got some rest (and relief from the pain) after her noon dose of oxycontin. She was VERY tired and 'out of it' at Liam's party and by the end (2 hours) she was in tears and quite upset again. She cried for a bit when we got home but is fast asleep now. I feel so bad for her. I feel like we're at the point where she needs more pain meds...but, I know what will happen when we give them. I think if we increase her pain meds and therefore, lower her alertness, she won't be with us much longer. I know I have to do what is best for her...but, it's hard sometimes to know exactly what that is. *sigh* Please pray for our girl. I'm thinking I'll call hospice in the morning and ask what they suggest.

Thank you for checking in on us and for all the love and support.

Angela

Sunday, November 16, 2008 7:15pm

I forgot to add that we weighed Hadley on Saturday and she has lost about 15lbs. =( I knew she had lost weight...but, I really wasn't prepared for that. She has such a sweet little round face...it sometimes 'hides' weight loss. *sigh*


*****************


Hello all,

It's been another week. *deep breath* =) Hadley's mid/late week was pretty good. She hardly slept at all on Thursday, then a little more on Friday. Saturday she slept for a few hours then we went to Ramsey's birthday party for 2 hours and that totally wiped her out. Totally and completely. She was able to eat some cake and ice cream (thanks to Cathy Gilmore for being so patient and helping her) and enjoy spending time with friends. By the time we left she was just exhausted and had already fallen asleep a few times through the party. We got her home and she immediately fell asleep...and slept all night. She woke up this morning before I did. Brandon got her changed and administered meds and she went back to sleep almost immediately. All she's had to eat/drink today is the few sips of ensure she took her meds with. She hasn't been awake since then. I went in several times to make sure she was in a comfortable position and to arrange blankets etc and she hasn't even stirred. Her breathing is very shallow while she sleeps. Her body is so tired...her spirit is just still so strong.

Keegan's vision appointment is tomorrow afternoon. Please be praying for he and Brandon and I. I've been repeating "he just needs glasses" over and over and over again in my mind. But, when you've already been struck by lightning it's awfully hard not to fear it. I have been hoping and praying that there is some obvious structural reason for his failing vision. I pray his optic nerves are bright and healthy and there is no question that there is any kind of pressure on them. We're hoping for obvious and easy to correct. Simplicity would be marvelous. *sigh* Please keep us all in your prayers.

Yesterday was my Papa's memorial service. We are in Oregon...it was in California. I wanted to go. I feel like I needed to go. But, I just couldn't do it. I couldn't leave Hadley...and in all honesty I just can't deal with the fact that he is gone. It is comforting to know that he is waiting for Hadley now. I know she will be thrilled. I didn't have him around for most of my life...but, he was the kind of grandfather that you never doubted his love for you. Maybe it was because I didn't know him and he waited for so long to have a relationship with us but, I never ever doubted how much he loved me. He was my very own personal cheering squad and I will miss him so much. Everyone should have a Papa like him.




On a much happier note...tomorrow is my baby's 5th birthday. Yes, "baby" Liam is turning FIVE. Those of you who have been following Hadley for her whole journey have watched Liam grow up. He was just 5 months old when Hadley was diagnosed...and now he is 5. We are SO proud of him. He is an amazing little person who has really shown that it is possible to truly thrive in the face of adversity. He has spent his entire life with a very sick sister. He has literally grown up in hem/onc clinics, waiting rooms for various specialists and hospital cafeterias. He has blessed our family in so many ways. He is a wonderful brother to his brother and sister. He is a comedian, a snuggle bug, a 'dude', a student, a friend and occasionally a mischievous little guy named "Cyrus" who gets into all kinds of trouble. *wink* He may be getting older but, he will always be my baby. We love you so much Liam. =)

Happy 5th Birthday Sweet Liam!

..

I'll try and get birthday party pics up in a timely manner. =)

Please keep praying for us. Please pray for and be kind to one another. There is so much heartache in the world...be kind, you never know what someone is going through.

With Faith, Hope and Love,
Angela

Tuesday, November 11, 2008 6pm

~Wednesday AM~


I'm pleased to report that Hadley seems to be having a good day. Her memory seems to be intact. I'm *hoping* that she just had a very realistic dream and it threw her off a bit.

What's odd is that she doesn't usually share her dreams with us and yesterday she told me she dreamt of walking without me even asking her if she was dreaming. Here is what's odd. I don't remember my dreams very often. When I do remember they are usually quite vivid and realistic. The night before last I had a dream that Hadley was up and running around and playing a laughing and was perfectly healthy with no disability at all. I kept running after her and asking her what happened and how she was able to be healed. She acted as if she couldn't hear or see me and I just kept running after her. Nobody else was there to ask I couldn't find anyone to explain or even validate that I wasn't crazy...that she was actually up and playing and running etc. That was the whole dream. I never found out how/why she was well. I never found out why she couldn't hear or see me. My guess now is that I was seeing her in heaven...perfect, whole, complete...but, unable to be both here and there. I wonder if she was having the same dream that night? I don't want to sound like a crazy woman but, I have to wonder. Is it possible for two living people to meet in their dreams?

Thank you for your continued prayers. They mean the world to us.

Angela



**********************************************************************



Hello all,

Today was hard...so hard. I woke up this morning to Hadley crying for help over the monitor. I jumped out of bed and ran in her room. I found her on the floor quite frustrated and upset. I try really hard to not let myself get in the way of whatever she is working through or experiencing along this crazy path. I had to hold back my crazy mama instincts. This is how the conversation went:

Mama: Hadley, you're on the floor?!?

Hadley: Yeah, I can't walk! I had a dream about walking...but, I can't walk! My legs are broken.

Mama: Oh, Hadley. Would you like help up into your chair?

Hadley: Yes. I'm stuck.

Mama: Ok baby girl.

*we get her back up in her chair*

Mama: Let's get a dry pull up on you ok?

Hadley: No. It's morning, I wear big girl panties (she hasn't for months now) in the day.

Mama: Ok, honey...are you sure you want to wear panties? It's ok to wear pull ups...Mama can help you.

Hadley: No, panties...I can do it.




So, put panties on her and 15 minutes later she was sobbing because she had an accident in them. She cried for a good half hour. When she finally calmed down she wanted to paint for a bit. She lasted another good 20 minutes and has been asleep since. During that bit of awake time she must have asked where the boys were 15 times. Each time I'd tell her that they were at school ( she went with me to take them there) and would be home later. She totally acted like she had never asked the question each time.

My heart was...no, is so broken. It's not fair that she has to go through this...but to have to come to terms with these limitations and decline again...that's just too much. I really, REALLY hope that this doesn't become a 'regular' thing. I really hope her short term memory isn't truly "gone". I don't know that I'm strong enough...

Last night I went and played Bunco. It was fun. When I got home at about 9:30 I went to peek in on Hadley. She was fast asleep and her breathing was so shallow I could barely see her chest rise and couldn't see it fall at all. I was relieved this morning when she was so talkative and alert...until I realized she had no idea why she couldn't walk or why I would suggest a wheelchair or a pull up. *sigh*

I should be grateful. We have her pain under control. Her anxiety is really well controlled as well. I just....my heart is so broken for her. I know she is headed for a better place...and I feel llike I spend half my time begging for a miracle here on earth...and half my time asking God to please take her and heal her. No mom should ever have to go through this.

We will be ok. We have to be. But, I'm so afraid of life 'after' Hadley. Please keep us all in your thoughts and prayers. We could sure use them.

With Faith, Hope and Love,

Angela

Sunday, November 9, 2008 5pm

Hello,

Hadley had a really sleepy week. Her body temp is all over the place and she spends the majority of the day and night sleeping. She did however, have a really great weekend. Saturday was the most awake and energetic I've seen her in a really long time. She laughed and made jokes and was just really playful and having a great time. She's been really tired today but, has managed to be awake quite a bit. She's lost a bit of weight. I'm not exactly sure how much because we don't really have a way to weigh her...but, she seems quite a bit thinner. We realized that it had been more than two weeks since she had actually eaten anything. Then, on Friday she ate 6 whole chicken nuggets. I'm sure that played a big part in how well she did on Saturday. She did have quite a belly ache. Her belly is just not used to eating anymore I guess.

I can't even really say how she's doing overall. One day she seems to barely be 'here' and the next she's just as vibrant as possible. It's such a mystery. We're so thankful for the good days...mostly for her sake...but, also because it just does your heart so much good to see her enjoying herself. =)

I'll try and update again later this week.

Angela

Monday, November 3, 2008 8:30am

I'm sorry, I totally forgot to add Keegan's appointment dates. We're still working on the ENT for his hearing and the genetics counseling. Apparently the docs that they wanted him to see don't accept our insurance. LOVE that. *grunt* But, his Ophthalmologist appointment is set for November 17th (which also happens to be Liam's birthday). Thank you for your thoughts and prayers. =)


Finally, I have Halloween pics for you. After uploading I realized I did a really bad job of taking pictures. I've been doing that a lot lately. It probably has a little to do with not wanting to 'have' to see ( I mean really see) Hadley's decline...and not wanting to 'miss' anything while camping out behind my camera. I don't know...regardless, here they are:

Wednesday, October 29, 2008 4:30pm

Hello,

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. 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,
Angela

Thursday, October 23, 2008 9pm

Hi,

I have some fun news to share. Our family has a new member. =) Her name is Baby Hope and she has stolen our hearts. She was abandoned and needing a home...and we were needing a sweet, furry, spunky little thing to brighten things up a bit. =) We are all in love with her.




Hadley has been sleeping all day today. We did wake her up to pick up baby Hope and bring her home...but she wasn't alert at all. She could barely hold her eyes open. She was awake, kind of, from 7:45am until about 9am while we took the boys to school and I gave her a bath etc. Then we got her up at about 2:45 and went and got the boys and baby Hope and got home around 3:30 and she was back to sleep by 3:45. I'm hoping she's awake a little more tomorrow so she can enjoy our new baby. I know she will totally LOVE her. =)

We've got a busy weekend. We're going to try and get to the Harvest Party at church on Saturday. Then Sunday is TLC. It's an annual church service held at the convention center. All of the area Churches of Christ gather and worship together. We haven't been for several years and I'm excited about it.

Please pray for our family.

With Faith Hope and Love,
Angela

Tuesday 10:30pm

Hello All,

Things seem to be pretty stable here. Do I dare say (type) that out loud? Hadley has been sleeping off and on during the days...but, has remained awake for several hours at a time. =) Symptom wise she seems to have hit a bit of a plateau. This is a huge blessing that we are very thankful for. Only time will tell how long it will last...but, we'll certainly be grateful for what we've been given.

Brandon heads back to work tomorrow. He'll be day working, no overnight duty. We are so grateful for the time he had at home. He was able to be here through the tough work of getting Hadley comfortable both physically and emotionally. I honestly don't think I could have handled all of that on my own. Getting her meds just right was rough. She is in a pretty good place now though. =)

Hadley has been offered a second wish through a local organization. I need to return some phone calls and see how that works etc. We also need to do a little more thinking about how she might handle a trip. I have hopes that she MAY get to go see her favorite princesses but, I don't want to totally overwhelm her and make things worse. I know that usually Hadley would LOVE that...but, we just have to decide wether it would be good for her or not. We'll see. =)

That's about all I have for now. Thank you so much for all your love and prayers. I'll try and get some pictures up soon. I need to charge my camera battery before I can uplaod. It died on the pumpkin patch field trip...a week ago. Oy.

With Faith, Hope and Love,
Angela

Saturday, October 18, 2008 12:40pm

Hello,

We're still here, plugging along.

Gramma and Grampa Fox were here visiting this week. Hadley was awake for most of their visit. It was the most awake time we've seen from her in months. She was quite 'spunky'...it became clear that we've created a bit of a 'monster'. Ha ha. After all the awake time this week she slept all day Friday and has been asleep all day today. I did get her up and give her a bath last night, even that small amount of activity wore her out completely. My sweet spunky bug is so tired.

Gramma Dora's service was this morning. We, of course, didn't go. She was the last of mine and Brandon's great grandparents, our children's great great grandparents. That's a pretty rare thing to come by. Five generations. We were blessed.

I have a really bizarre story to share. My inlaws bought a dog shortly after Brandon and I were married. She was born just 2 months before Hadley. They brought her home and named her Darby. She has grown up with our kiddos. We have pictures of her with the kids throughout the years. She is the curly sweet Airedale in the pictures I posted from their house this summer. The German Sheperd in the pictures is Keizer. He belongs to my brother in law, Evan, and has been living with my in laws since he was a pup. Well, Evan finally found a place for rent that would allow him to tkae Keizer to school with him. Darby had been acting really odd ever since Keizer left. Things got worse and worse as time went on and my mother in law took Darby to the vet last week. You would never in a million years guess what they found. Yes, a brain tumor. Not only a brain tumor...but, a brain tumor that engulfed her optic chiasm etc. Sweet Darby passed away this week. I can't even imagine being my mother in law and standing there hearing those words. She is much stronger than I am. I may have just melted into a heap on the ground. What are the odds? Seriously. So, now, Darby is waiting for Hadley as well. To say it's been a strange week for our family is putting things lightly.







So, the boys and I had a pretty tough discussion this week. I had picked them up from school and they were talking about how they are growing up. Liam said..."when we grow up we won't need wheelchairs...but, when Hadley's a 'dult she'll still need a wheelchair. Right, mom?". *sigh* So, I had to explain again, that because of the tumors in Hadley's head she will not be growing up into an adult. Liam was very confused by this. He wondered if maybe she could go to heaven and get better and then come back and be a 'dult. *sigh* My poor boys.

Well, Hadley has finally woken up. Yes, it's 12:45 and she is just waking up. *sigh*

I need to get my attitude straightened out. I'm feeling really beaten down and tired.

Please continue to pray for our girl and our family. Pray for Josh, Mindy and Jeremiah and their family as they grieve for Hannah Joy. Pray for our family as Gramma Dora is missed and loved so much.

With Faith, Hope and Love,
Angela

Monday, October 13, 2008 midnight

Hello,

Baby Hannah Joy passed away shortly after her birth on Saturday. She weighed 15 ounces and was 10 inches long. Please continue to pray for Mindy and Josh and their sweet little boy Jeremiah and their families. Our hearts are broken for them.








Hadley had an 'ok' weekend. It wasn't the worst we've seen but, it certainly wasn't the best either. She was very weak, quite anxious and just not her happy Hadley self. She did a lot of talking of needing to 'go'...she never quite finished her sentence on that topic. She just felt the need to 'go'....but she was SOOOO tired. She has watched Sleeping Beauty at least 20 times since I bought it for her. Thank you Walt. =)

Brandon's great grandmother passed away last night. She was 98. Gramma Dora will certainly be missed. She was the sweetest little thing. I'll have to find and post some pictures of she and Hadley. I know I have some cute ones from when she was a baby. =)

The boy's appointment with the therapist went very well. They love her and can't wait for her to come back. =) I'm so thankful for that resource.

I think that's pretty much it for now. I'm going to the pumpkin patch on Wednesday with Liam's class so watch the family blog (address below) for pics etc. It will be my first time chaperoning a field trip. =) I'm sure it will be fun...I'm sure all parents think that their first time. Ha ha.

Have a great week everyone.

WIth Faith, Hope and Love,
Angela

Saturday, October 11, 2008 12:25pm

First, Hadley is 'fine'.

But, I have an URGENT prayer request. Josh and Mindy are family of some very dear friends of ours. Mindy is 6 months pregnant and has developed toxemia. Because of danger to both she and the baby the doctors have decided that a C-Section is necessary. Please pray for Mindy and her little one and Josh. Please pray for Mollie and Rick and Anne as they head out to the hospital to be with and try to support their brother/son and daughter in law. We know their lives are in God's loving hands...but, it's hard to cast aside our will for His in a sittuation like this.

Thank you.

With Faith, Hope and Love,
Angela

Thursday, October 9, 2008 9pm

Hello,

Hadley had a good morning. She got up and soaked in the bath and then had a leg and foot massage with her massage therapist. She LOVES her massages. =) I am SO glad that it was scheduled for today because Hadley really seemed to be battling a cramp. =( She couldn't quite communicate what it was but, I'm guessing that that's what was going on. She was awake until about 11am and then slept until about 6pm ish. So, it looks like she'll probably be back in her 'regular' 7-8 hour nap cycles again. She was pretty weak while she was awake tonight...and is already back asleep.

Hadley is INSISTING on playing 'flipball' (football) in her wheelchair. She even told me, while begging, "I know the rules mom...I promise I won't scream like a girl." *snort* She is so stinking funny. So, we may have to gather some teams and play some foot ball. I was known to play a pretty mean game of mud football back in the day but, that was many moons ago. MANY. =)

The musician comes in the morning to play with/for Hadley. In the afternoon the child therapist is coming to meet with the boys. =) We finally connected and got it all set up.

Doernbechers is checking with the photographer on our family photos. We should have them any day now...Im hoping. I just about had a panic attack over the possibility of them being destroyed, deleted...whatever the other night. I figured I should check...just in case. But, I'm sure they're fine. =)

I do apologize for not returning many calls. I have been really bad about that lately. Please bear with me. I promise I'm not trying to be rude. =)

I'd better go check on our Sleeping Beauty...who actually got Sleeping Beauty on DVD today! =) $15 at Target until Sunday ya'll. =) She was so excited!!!

With Faith, Hope and Love,
Angela

PS. I've updated the family blog a few times too. =) www.FoxFamilyFive.blogspot.com

Tuesday, October 7, 2008 9pm

Hello all,

Well, no helicopter showed up yesterday. =) Hadley had a 'good' day. Our hospice nurse came out today and mostly 'just' visited and played with Hadley. I'm glad for that. =) I think Hadley is a little less leery of switching nurses now. =) They even did a few footprints with finger paints. Hadley LOVED having the squishy paint on her toes.

Hadley was awake a lot of the day on Monday...and until about 2:15 today. She seems to be trying to get into a different sleep cycle?!? I don't know. But, because of the amount of time she was awake yesterday she is pretty well hydrated now. *Yay*

I talked to our nurse about a few of the new things things we saw over the weekend and she 'reassured me' that Hadley is following a 'natural' progression. This very deep sleep that is hard, if not impossible, to wake her from would be the expected next step after the progression to sleeping so many hours a day. She also reassured me that I'm not 'nuts'...that all the things that are going on are progression of disease and Hadley getting nearer and nearer to her death. A couple good days or spurt of good times does not mean that she is not progressing. I was a little fearful that maybe I was making a really long nap out to be more than it was etc. Unfortunately, I'm not.

Hadley told me today that I am her bestest Mommy in the world. I'm sure I don't even have to tell you all how my heart just glowed after that. I love seeing glimpses of my sweet girl. I love her so much.

Sunday, October 5, 2008 4:35pm

Hello,

I really do mean to update more often. I have been really trying to be more positive in my updates. When people see Hadley they seem surprised that she looks 'so good'. Then other times when I say she is having a good day...people think she is all of a sudden all better. The truth is...there's really no way of communicating what is really going on. Her body is declining...all we can see are the 'outside' symptoms. There's no way of knowing what is really going on inside her body. It is hard not knowing.

I felt like we were prepared for her to 'leave' a few weeks ago. As prepared as you can be. She was miserable, we were miserable...it felt like it was time. It wasn't. She is still here. She is happier now, more comfortable. We had a week or so of..."well, maybe she'll make it to Halloween?!?" Then, she slept all day Friday on the couch. We had lots of people coming in and out and she just slept the day away. She had a bowel movement in her sleep...I changed her and she never so much as opened her eyes enough to peek out at me. Later that evening I decided to wake her so she could have her meds and say hello/goodnight to all of her visitors. I couldn't wake her. I sat her up...nothing. Kissed all over her face...nothing. Told her she had a happy meal waiting...nothing. She was clearly breathing which only worsened my anxiety because her breathing had obviously changed. I'd never seen it like this before. After a few minutes of trying to wake her my heart really started racing. The room was full of people and I wanted to cry and beg her to wake up. I honestly and truly thought she was in a coma and we had seen her awake for the last time. It was the scariest moment of my life to date. She did finally wake up. I sighed a breath of relief and was then awake until 2 am from the adrenaline rush. But, I can't shake the feeling that this was a 'warning' of some sort. I hope that doesn't sound too weird.

Last night Hadley wanted to sleep in our bed. So Hadley and I were getting all snuggled in while Brandon shut off lights and locked up. Hadley snuggled in very close to me and asked "What day is it?" I told her it was Saturday. She said "Tomorrow is Sunday...we have church." I said "Yes, we do." Then she told me, very matter of factly..."we'll go to church tomorrow...then, on Monday I'm going to go to heaven in a helicopter." I asked her if she was ready to go to heaven now...and she said "Yes, I want to be all better." So, we talked a little about how great heaven will be. I reminded her that Stevie will be there waiting for her...and she reminded me that they will pick yellow tulips. She is ready. She's just waiting on her body.

She's been awake for about 3 hours each day. She's awake in the morning for about 2 hours and in the evening for about an hour. It's getting to the point that even if she eats and drinks for the entire time she's awake she's not staying hydrated. She had a 36 hour period Saturday/Sunday where she didn't urinate a single drop. She's only having a bowel movement every 4 days or so. Her eyes aren't closing all the way while she's sleeping so the combination of that and being dehydrated is making her eyes pretty bloodshot. She has moments of total alertness, those are usually in the morning, but, overall she's speaking very slowly and processing very slowly.

The selfish part of me will never be ready to let her go but, the mama part of me knows that it's what's best for her. This is truly the hardest thing I have ever done. My Hadley is so worth it though. She really is amazing. I am so thankful for her.

Please keep praying. Pray for peace for our girl. Pray for her 'perfect healing'.

With Faith, Hope and Love,
Angela

Thursday, October 2, 2008 10:20AM

I am SO happy to report that Hadley is in a great mood today!!! I woke up to her sweet little giggle. When I went in to see what was so funny I was shocked to see her face covered in crayola marker. *LOL* She couldn't even see herself but, she knew it was funny. =) We haven't put her in front of a mirror for a few days because she has a lot of anxiety over blood all of a sudden...and her eye is still really bruised from her fall last Friday night. Anyway, she is in a great mood. I am SO thankful.

She is actually in her room with a massage therapist as I type. She is just going to start with a foot and leg massage and see what Hadley likes/will tolerate. Hadley's princess lullabies are playing and she looked really relaxed when I left the room. =) I'm so thankful for the hospice service. They have really been a great resource. =) I don't know how I'd do it without all the support I have. =)

I have a few prayer requests aside from Hadley. My cousin's husband, Brian, was in a pretty bad motorcycle accident last week in Tacoma. He is home from the hospital and, now, seems to be on the road to recovery. But please pray for their family. They have two small kiddos and another due in December. Prayers of thanks that Brian is alive...and prayers that he will astound doctors with a super speedy recovery Please.

Also, a family friend of ours, Luke, was in an accident a couple nights ago. He is up at OHSU and has short term memory loss and a lot of healing to do. Thankfully his CT scans have all been good and he didn't require any neurosurgery. Please pray that his memory is restored and he heals quickly...and give thanks that he too is alive.

I finished reading The Shack last night. I have to admit that when I started it I didn't really know what I was getting myself in to. I read a few a chapters and decided to save it for later. It's pretty heavy stuff that hits a little close to home right now. But, I couldn't not keep reading it. So, I'd pick it back up and plug along. It took me a few weeks...but, I got through it. It truly is an amazing book. I am really impressed with it. Brandon and I don't tend to read a lot of the same things. He's more of a non fiction reader (history buff) but, I think I may have to insist he reads this one. It is the sort of book that will rip your heart wide open...in a good way.

I forgot to mention that I added the link to our family blog in the links section below. I had started back before Hadley's relapse as a sort of transition away from Caring Bridge. I wanted a place to put our non medical family news. Then, Hadley relapsed...and well, how do you separate these things? Anyway, it is a place to catch up on the rest of the family goings on. www.FoxFamilyFive.blogspot.com

Also, I wanted to say a special thank you to everyone who has sent gifts, cards, prayers and love to our girl and our family. It means the world to us...it really does. So, thank you!

With Faith, Hope and Love,
Angela

Wednesday, October 1, 2008 3pm

Well, 'happy Hadley' has been replaced, again, with 'not so happy hadley'. Hadley's day started out with lots of tears and anxiety and grumpiness. *sigh* It is so hard to see her this way. I am thankful for the few days of happiness she had...but, this roller-coaster is just too much. I miss "MY" girl. The Hadley we have known for 8 years.

Hadley has lost control of her bowels. I'm sure this didn't help with her mood or anxiety level...I know it didn't help mine. It's just another reminder that things are progressing. Brandon earned major brownie points with me for changing her this morning. Neither of us was ready for it...and he stepped up. Changing your 8 year old's diaper isn't something you ponder when preparing to care for your terminally ill child.

She is sleeping now. I guess I'll always be hopeful...I keep thinking that maybe she'll wake up in a better mood...giggling...teasing daddy...loving on mommy. *sigh*

Please pray for our girl. Thank you for all the love and support!!!

Angela

Monday, September 29, 2008 8:30 pm

Sorry again about the lack of update. =(

Hadley is actually doing pretty 'well'. She is still sleeping a LOT (about 19ish hours a day) but she is doing a lot better during the time she is awake. We aren't using much Lorazepam at all after the switch to Clonazepam and she is doing MUCH better with it. Her mood is MUCH more stable...her anxiety is just about gone and her tremors are even noticeably better. =) We are SO thankful for all of these changes. It truly makes me feel more thankful for the time we have and less upset that she is suffering. Her sleep cycles really seem to be stabilizing as well. Once I get adjusted to it we'll be good to go. =) I feel like we may finally have a decent balance with her meds. YAY.

Her birthday was good. Really mellow for her. A few of her teachers and aides stopped by. Auntie Manda and Uncle Clay and Karen came by to give hugs. Auntie Hayley and Uncle Drew and Uncle Colin and Marie came to town to spend a few hours with her. She slept through most of it but, it was good for all of us. Hadley is so loved...so loved.

My girl's night was fun. =) I'm thankful for my friends. I really needed a night to just 'get away from it all' without getting away. Thank you friends! =)

I'll try and get some pics up soon. Hadley is really looking a bit like Rocky Balboa these days. The swelling in her eye started going down a bit...but now she has a pretty wicked shiner. =( It's so sad because she is finally her happy little self and laughing and she has this big swollen shiner. Just like Hadley to laugh it off. I'm so thankful to have 'my girl' back for a bit. She's such a blessing. =)

Better run.

Angela

Saturday, September 27, 2008 Happy Birthday Hadley!!!

My sweet baby bug is 8 today. It is so hard to believe it's been 8 whole years...yet, it seems like it's been a life time. My girl has fought so hard for everything she has accomplished. She has worked harder than any kid I know just to be here, to communicate, to walk, to smile. She is such a fighter...my sweet baby girl. Hadley loves like nobody I've ever known. She has no reservations, knows no stranger, sees no reason to not hug everyone she comes into contact with. Hadley's love of people and life is so uninhibited...so genuine and pure. I love this girl so much. She has truly taken what she was given and made the very best of each and every moment. Hadley lives and loves fully. I am so proud of her and to be her Mama.

Hadley, thank you baby girl for all the joy you have brought to my life. Thank you for all the lessons you have taught me. Thank you for always demanding that I push myself to be the very best I can be. I will always celebrate and honor you and give thanks to God for allowing me to be your mommy. You and your brothers will always be the source of my greatest pride and joy. I love you SO much...forever and ever.



Hadley fell in the bathroom last night. She hit the bathtub pretty hard and now has a left eye that is nearly swollen shut. I walked away from her while she was in the bathroom and she apparently tried to stand up. =( I feel so guilty and sad for her. It had to hurt SO bad. The minute I heard her head hit the tub my heart hit the floor and I ran back to her. So, when you see her poor little swollen eye in pics...that's what happened. Mommy was negligent. Lesson learned. =(

Have a wonderful day. Hug your babies so tight. Love on them every single day.

Angela

Friday, September 26, 2008 11am

Sorry for the gap between updates. Hadley and I had a really long night Wednesday. I went to bed around midnight and Hadley woke up very agitated at 2:30am and was up until about 8:15am. Neither her meds or anything I tried to do for her helped calm her. Like I said it was a long exhausting night. She finally gave in to sleep at 8:15 when I moved her to the couch. She slept there, even with all the hustle and bustle of the house around her for 7 hours. She slept well in our bed with Brandon and I last night. I am SO thankful for that. Mama's need a little more than 2 hours of sleep a night to be effective. =) So, we are all pretty well rested now.

Physically Hadley is continuing to decline. Her lungs are back to sounding pretty junky. It's most obvious when she is sleeping. Even propped up she is just really junky sounding and breathes a lot more shallow and fast than normal. This is all 'normal' for where she is at...but, still hard on a mama's heart. She is no longer able to bear her own weight either standing or on hands and knees. SHe has tried to get herself up from a lying position a few times and it just doesn't work for her. Her tremors seem a little worse each day and her truly awake and 'alert' time is much shorter each day. She's gotten to the point that we may only see her eyes totally open and be able to understand what she is saying for about 5 minutes at a time and maybe twice or three times a day. This usually happens a few minutes after waking. She needs a little bit of time to get oriented...then she'll shine for a few minutes and then ask to lay in her chair and watch cartoons and veg.

We met with the funeral director on Wednesday to do some pre planning. It's something that I have been putting off and I finally got up the courage to call and make the appointment. It went as well as can be expected. We've got a lot of the general planning out of the way so that we don't have to worry about it later. It was both a relief and extremely hard to do. I have a few more things that I need to get done and/or decide on. I'd like to get that done today so that I don't have to 'think' about it anymore. It's really weird to be making these plans..but, I know I'll be thankful I did later. It's just not supposed to be this way.

I'm really feeling like each day is borrowed now. Hadley is ready to be healed. I have moments when I tell God that if he is ready to take her to do so because I just don't want her to be upset and in pain any more...and then there are moments like this morning when she isn't even quite awake yet and she says "Everybody loves you Mommy" and puckers her lips for a kiss and then waits for it...that I just can't bear the thought of her leaving us. She is/has been/will always be such a gift. I am so thankful that she is 'ours'.

Tomorrow is Hadley's birthday. She will be 8 at 5:01 am. She made it. =) I am both very thankful and very sad. I'm having a lot of those "last birthday" moments. We're going to spend the morning together just the 5 of us...celebrating Hadley. Remembering our favorite times with her...maybe looking through pictures...taking new pictures... drawing pictures...singing her favorite songs...whatever. Then, tomorrow night a group of my friends are coming over to help me unwind a bit. =) I'm sure there will be some general rowdiness and good times. We have a hot tub so I'm sure we'll be soaking and having a few drinks...followed by a few more. =) I'm so thankful to have so many people that truly care in our lives. I can't imagine walking this path without every single one of the people in our big support system. Thank you.

I'd better run.

With Faith, Hope and Love,
Angela

Tuesday, September 23, 2008 12:30pm

Maria and our new nurse (whose name is completely escaping me right now) left a bit ago. Hadley's lungs sound coarse. I'm adding a tidbit on that because I had to look up what that meant. (Just when you think you know everything...)

Coarse Crackles-a loud, low pitched, bubbling or gurgling sound that starts in early inspiration and may extend into the first part of expiration. They sound like the opening of a Velcro fastener. Coarse crackles may decrease somewhat by coughing or suctioning but will reappear. The inhaled air collides with secretions in the trachea and large bronchi. These sounds occur in such conditions as pulmonary edema, pneumonia, pulmonary fibrosis, and terminally ill with a depressed cough reflex.


So, Hadley's disease is progressing. Her tremors are even worse today than they were yesterday. She had a rough morning with lots of crying and agitation. She finally fell asleep when I put her in her wheelchair and rolled her out into the living room. She wants to "Go" but is so tired that anywhere we go she sleeps. I think she felt prepared to leave in her wheelchair. Anyway, she was in and out of sleep through the nurse visit. We discussed her agitation etc and that we've been having to increase her ativan. Our next step is to increase her oxycontin. We've been having to give her more and more oxycodone throughout the day for break through pain and I'm sure she's in more pain than we know about because of her inability to tell us. So, her oxycontin is going up and hopefully that will get her back to a more peaceful place.

Maria is having the therapist come out to do some hand casting for us. She is also going to meet the boys and maybe play with them for a bit. Sort of get that relationship started.

I have a funny Hadley story to share. =)

Last night was rough for Hadley. She wanted me near her all day and when I wasn't she was not a happy girl. She was in and out of sleep and once she kind of half woke up and said "Blue (from Blue's Clues) loves Captain Crunch." I asked her how she knew and she said "Everybody loves Captain Crunch." =) Well, I don't know if everybody does...but Hadley sure loves it! =)

Alrighty, I'd better run. =)

Faith Hope and Always Love,
Angela

Tuesday, September 23, 2008 9am

Yesterday was a pretty average day for Hadley. She was in and out of sleep all night and needed me to be holding her or near her. Then the daytime was more of the same. She did sleep soundly for a bit but, was in and out. Sometimes when she's sleeping it's like she's not really sleeping...she's just got her eyes closed. You'll think she's asleep and then she'll start talking or if I try to walk out of her room she'll cry. She has good moments where she's not crying and overly anxious/scared...but, for the most part she is just a mess if she is awake. It's so hard to see her like this. She has always been such a happy girl. Nothing ever got her down. As emotionally and physically exhausting as it is to care for I can't even begin to imagine how tired she is of feeling like this. She has to be exhausted and frustrated.

Our hospice nurse is coming today at 10:30. She is bringing a new nurse case manager. I have mixed feelings about this. We love Maria and have just clicked really well with her. I'm sure that the new nurse will be just as wonderful...but, we're sad to see Maria go. =( We'll still be in contact with her on Wednesdays but, we won't see/talk to her nearly as much. Please pray that this is a good transition. I'm a little anxious over someone 'new' (to us--she's worked in peds hospice for quite some time) coming in at this stage.

Hadley's cough seems like it may be letting up a little bit. Yesterday she was really junky sounding and was breathing pretty quickly, even while sleeping but, today she sounds quite a bit better. It's still there...but it's not quite as noticeable.

She did have a good time Sunday night. We had some friends stop by who brought her some gifts and she was so happy with them. Then our friends Teresa and Emily came by with their granddaughter/daughter Melody who is 6 months old. Hadley loves babies and totally loved holding and feeding her. It was nice to see her awake and not upset.

Please just continue to pray for our girl.

Also please pray for my cousin Stevie's family. Today would have been her 21st birthday. For those of you that are newer here, Stevie had a brain tumor as well and passed away on 4/19/07. She was 19 1/2. We love you Stevie. Steve, Gina, Aly and Noah I pray for peace and love to surround you today and all days.

With Faith Hope and Love,
Angela

Sunday, September 21, 2008 2:30pm

Just a quick update before my laptop battery bites the dust on me.

Hadley continues to sleep most of the time. Sometimes she is in and out and sometimes she is fast asleep. She has very little to no desire to leave her bed or chair. Is only eating a few bites of food a day but, is still taking in a decent amount of fluids. We've been able to, for the most part, keep her pain and anxiety under control. She likes to have me near at all times and when she wakes and I'm not there waiting she is a very sad little girl. She has grown quite 'shaky' I'm beginning to think that it isn't seizure related. She's fine until she tries to move, reach for something etc. Then her hands arms, legs etc are very shaky. It's odd. Her seizures are continuing as is her cough. It is very wet and yucky and she just doesn't want to cough because it hurts her head. There are times that she tries because it sounds like she's just trying to take a good deep breath but it's just not enough to clear anything out. Apparently this isn't uncommon in brain tumor hospice patients.

Speaking of brain tumor hospice according to the brain hospice 'list' and timeline typically people with her same symptoms live for about 1-2 more weeks. Obviously there is no way that we can know how this journey will unfold. But, that is the 'norm'. BrainHospice.com

We were able to go to church this morning. It was so nice. I really needed it. It was also hard. Really hard. There are so many things I am really going to have to push myself to face in the days/weeks/months/years ahead. Thank you Metro Church of Christ for being our family.

I'd better run. The house is looking a bit like we didn't do anything this weekend. Ha ha.

With Faith, Hope and Love,
Angela

Friday, September 19, 2008 9:30pm

Hadley has been asleep all day. Yes, all day. In the past 24 hours she has been awake for approximately an hour and a half (and only about 5 hours of the past 48). The short periods that she was awake she fell asleep with captain crunch in her mouth, fell asleep in her room while I was vacuuming it and slept through rowdy boys coming home from school and coming in and out of her room and slamming the door a few times. Her seizures seem to be getting worse instead of better despite the fact that she only has 1 more dose of antibiotics left and is no longer running a fever. They are almost constant now...to the point that even when she is awake she is 'zoned out' the entire time. Talking is quite a chore for her...partially because she's just so tired, partially because her voice is so hoarse and partially because she seems to get flustered trying to recall words. Most of the time she winds up just giving up and pointing etc. I feel so bad for her. So bad.

I think I said it before...I'm not sure if I shared it here...but days like this I am really torn between hoping for a better day 'tomorrow' and just wanting her to be able to finally be done with all of this. No more meds, no more owies, no more anxiety, no more seizures, no more limitations. Just a free spirit finally set free. That is a hard thing for a mommy to feel. It rips my heart in pieces...but that's inevitable in this situation. I just want what I've always wanted...what's best for Hadley. Unfortunately, at this point, we don't have that here on earth. *sigh*

I try not to let my mind wander and wonder how long we have. I try not to do a mental checklist of symptoms and progression. I try not to predict our time left with her. It's fruitless. She has shown us that so much can change in just a day. She had some great days earlier this week. We saw the Hadley that we know and love so much again. Now we're back to this. Who knows if tomorrow will be better or worse. We are learning to take this not day by day...but hour by hour...minute by minute.

Please continue to pray for our girl. Pray for our family...for our sweet boys....for Brandon and I. You never imagine that something like this will 'happen' to you...it's still hard to imagine we are 'here' even though we've known for years that it was a possibility. For years I've faced the possibility of Hadley's death head on. I thought I was preparing or maybe even trying to ward it off. I think I thought that if I faced it and 'prepared' myself for it it wouldn't happen?!? I'm realizing really quickly that there is nothing you can do to prepare for this. You can show your love, say your goodbyes...but, that will never be enough to keep your heart from breaking. There is nothing that can protect a mama's heart from something like this.

With Faith, Hope and Love,
Angela

Thursday, September 18, 2008 10pm

Hadley slept for the majority of the day today. Her temp was right where it usually is at bedtime. =) She was a bit agitated and needed some of her 'break through' pain med and an extra mg of lorazepam (for anxiety) but, she's resting quietly now.

I'm thinking that her weird low temps this morning were probably a symptom of a postictal state. I'm not sure if that's normal for all kids with epilepsy but, it seems to be the norm for Hadley. I'm hoping that the seizures are a result of the infection and will ease up when she's fully recovered from that. The poor girl just has so much going on in her body right now. It's just got to be on overload.

I also wanted to let everyone know that may be more familiar with epilepsy that we do have Diastat at home in case of a seizure emergency. I had mentioned, in a past post, that I was scared of a seizure emergency. Our hospice nurse and Neuro Oncologist did make sure that we have several syringes of Diastat on hand just in case we need it. We're not anticipating it...but, it's not really unexpected either. Does that rally make sense? I guess, we are anticipating it since we have it in our home. Anyway...we have it in case we need it. =) ANd, if the seizures don't slow down after we've finished antibiotics we'll likely be increasing her dose of Trileptal. I HATE tweaking seizure meds. Well, I have a real love/hate relationship with them all together. *grunt*

Tomorrow is Friday and it's supposed to be our first quiet weekend around here in several weeks. We have really loved having all of our family in town but we are all exhausted. The boys are only 4 and 6 and they are both attending school from 8am-3pm Monday through Friday. They have spent every weekend with lots of visitors, LOTS of junk food and lots of late nights. This evening I rocked both Hadley and Liam as they cried because they are just exhausted. Keegan sat on Hadley's bed contemplating crying as well. We need some 'snuggle up in the love sac and VEGETATE' time. The kids need it and Brandon and I need it.

Alright...well...I'll update with any news. I'll try to update tomorrow evening if there are no changes tomorrow. Thank you for continuing to check in on us and pray for us, especially our girl.

Faith Hope and Love,
Angela

Thursday, September 18, 2008 10am

Hadley's cough is lingering. It still sounds pretty bad. Her fever is gone...but, now her temp is quite a bit lower than it usually is. ??? She is cold to the touch despite being on bed under covers. ??? Lots of seizures...still really 'jerky' or 'jittery'. She is just off. Really off. I don't know why this cough has me as panicked as it does...but, I can't shake the feeling that this is something really bad. ??? I can't explain it. Maybe it's just me freaking out over a cold so that I can avoid freaking out over brain tumors? Maybe it's my mommy gut? Who knows. I DO know that I don't like seeing my girl like this. =(

Please keep praying.

Please help us spread the word about Project Brain Child...and if you're an AE Card holder please vote!!!

Wednesday, September 17, 2008 2:30pm

**8pm**
After a few phone calls our hospice nurse and neuro onc decided to treat with antibiotics. We don't want her to have to get even more uncomfortable or for her seizure activity to increase before we get whatever this is under control. After further 'cross examining' Hadley told me her head hurt around her ears. I was going to tuck her hair behind her ears and she flinched away from my hand and I asked her if her ears hurt. When I asked her to point to where it hurts she pointed to her head around her ears.

Anyway, I went and picked up her Zithromax and she's had her first dose. She is coughing more this evening. She holds her chest when she coughs and says it hurts. If it's not one thing...*sigh*. I feel so bad for her.

I was going to wait until I had pictures from everyone else to put together a scrapbook of her MAW day but, I think I'll run and grab some stuff to throw a small one together for her tomorrow. I just want her to have that reminder of happy times. She's been pretty grumpy and down for the last 24 hours.

One thing that was both sad and an *awwwwwwww* moment from last night. Sam and Kat (our wonderful VOLUNTEER wish granters) brought Hadley all kinds of wonderful things for Hadley. One of those things is a projector that puts scenes from different disney princess movies on the wallof a dark room. So, in an effort to make Hadley's room as comforting and pleasing as I could last night, I turned it on and set it to the scene from Cinderella where the Fairy Godmother is in the garden. I had let Hadley have a little space and had turned on the "Hadley Monitor". I heard her crying and went up to see what was wrong. She was pointing at the fairy godmother (about a foot and a half in length on the wall) and was sobbing saying "she won't answer me. I want a fairy godmother pillow and she won't say yes!" I felt so bad for her because she was SO sad about it. But, at the same time it was one of those moments of childhood that we hadn't experienced with her. The tumors did so much brain damage early on that we missed out on a lot of those toddler-ish experiences with her. It was apparent that she REALLY thought that the fairy godmother was capable of speaking to her and was choosing not to. I had to be thankful for that moment of pure childhood innocence.

Please pray that our girl is feeling better tomorrow. Also, please help us spread the word about the American Express BRain Child Project below. The info can be posted to a blog or sent out in an email. They even have printable flyers and postcards. Just click on "share with others" for more info. If there was ever a worthy cause for a mass email 'spamming' this it, well at least in MY opinion.

***********************************************************


So, Hadley had an awesome day yesterday. Then, had an awful few hours in the evening. She was able to sleep soundly...although she insisted on doing so in her chair. She claims she is scared of her squeaky bed. ??? Anyhow she slept from around 10 ish last night until 1:15 this afternoon. She woke up with a low grade fever and a gnarly cough/chest congestion. She's pointed out several spots on her head that are hurting her...she hasn't been up and around yet...but is in a fairly good mood. She is watching cartoons and wanting to rock in her chair. She did have a seizure with motor involvement this morning. It was kind of scary because you never know wether it's going to end quickly and just be a hiccup in the day...or wether it's going to be that stubborn one that won't end and causes something big and scary. The whole right side of her body was involved. It started down at her toes and worked it's way up. She's been sort of 'jerky' ever since then. It's not like her movement is involuntary...it's just very rigid and 'spastic'. I don't really know how to describe it. I just know that I don't like it.

Along with the cough she has said that her ears hurt and don't hurt. ??? So who knows if she has another ear infection or not. We'll see I guess. I called our hospice nurse and then missed her return call...so, I'm waiting for another call back. I'm hoping that she is able to come by but, it may be another nurse later on this afternoon since it's already almost 3pm.

I'll update after that visit or I talk to them or whatever.


Also, here is something you can do for kids with brain tumors (like Hadley). It takes a moment of your time and doesn't cost you a dime. You do have to be an American Express cardholder to vote...but, even if you aren't you can help out by spreading the word. Thank you SO much.



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)

Tuesday, September 16, 2008 Noon

10:30pm

Just as quickly as "happy Hadley" returned she disappeared again. =( She spent the last two hours crying, being scared and in pain. Here I thought the roller coaster of the treatment years was the craziest ride. Somehow I thought that the ups and downs of the journey were over. We know what the outcome is now...unfortunately, the hills and valleys are steeper than ever.

Please pray that our girl has a good day tomorrow. Poor kid.


***********************************************

The last day and a half have been great. Hadley is feeling "better" (her words). She is happy and smiling and laughing and emotionally her 'old self' again. I'm assuming this is her meds finally regulating. I am so thankful for this time with her...but, have to admit that I feel a little guarded in anticipation of going through the rapid decline we've experienced with her all over again. *sigh*

I purchased a "Hadley Monitor" this weekend so that she can have a little space back. She has always been a really independent kid and she was getting sick of me hovering all the time. Now I can listen in and know if I need to go in and help her but still allow her some breathing room. =)

Alrighty, thank you for all the prayers, love, support, gifts, flowers...everything. The love and support we've experienced has been overwhelming.

With Love and HOPE,
Angela

Sunday, September 14, 2008 1am

The pictures in the slideshow(s) are in no particular order and are unedited. I will put together a more 'polished' version after I've gathered photos from everyone else. =)

Thursday, September 11, 2008 1pm

First, I'd like to say that my thoughts and prayers are with all of those who lost friends, family and loved ones in the 9/11/01 attacks. May their souls be at peace...and yours healing.



Yesterday was a mostly peaceful day. Hadley rested a lot and cried very little. I think we are finally getting her meds where they need to be. The long acting pain meds helped tremendously. There have been changes over the past few days but, some of them are subtle. One is that she is sleeping/resting with her tongue sort of hanging out of her mouth. One of the more obvious is that she is no longer walking without assistance. In fact, she rarely walks at all. Her poor little feet are very swollen and her muscles seem to be quite stiff. I've been massaging them with lotion a few times a day because she was complaining about them itching. The occupational therapist from hospice will be here shortly to deliver a gait belt and walk through the house and try and see if there is anything else we can do/get to help Hadley and I out.

Other than that things are the same. I had heard that if you have to have cancer and die brain tumors are the most humane way to go. I would hate to see the alternative. This is heartbreaking. In some ways I feel like MY Hadley is already gone. Although, there are moments she lets me know she is still there. Tuesday afternoon we had Greg and Rick (ministers from Metro Church of Christ) and the CG district chaplain over. Hadley had come out to say hello but, had decided to go back to bed. I took her in and got her all settled. I came back out to the living room and sat down and Hadley started crying. So I jumped up and went back to her room. When I got there she told me she was scared. This is common these days so I went through the routine of her telling me what she's scared of and then trying to help her feel better. So, I said "What are you scared of baby." She answered "I can't find my cookie, it's gone." I said "You can't find your cookie? Is it possible that you ATE it?" She replied (or rather didn't reply) with "hmmmmmmm. *wail* I can't find my cookie." I finally said "Hadley, would you like another cookie?" "Yes please mommy." =) This girl. =)

Well, I'd better run. I need to check on her sheets in the dryer.

With Love and HOPE,
Angela

Tuesday, September 9, 2008 8pm

Hadley's day was restful. I think we are finally getting her anxiety and pain under control. We had some really rough times in the past week...but, I think we're finally getting her to a peaceful place. I had to realize that the tumors were really not going to allow her to be lucid and herself even without the meds that make her sleepy. The drugs aren't making her too sleepy...they are making her life peaceful. Without them she is miserable. I had to get past that 'not wanting to overmedicate' issue before we could get her where she should be. So, she is peaceful but, sleeps a great deal of the time. It's hard...but it's easier on my heart than hearing her sob and beg me to make it better...and her being scared of everything imaginable was just so hard. Anyway, she is resting better and having much more peaceful days now. Hopefully that will continue.

Thank you for continuing to check in. Your prayers for our girl and our family are so appreciated. Thank you.

With Love and HOPE,
Angela

Monday, September 8, 2008 7pm

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Today has been, hmmm, I don't know how I would describe it. Hadley did rest a lot which was good. She only tolerated being out of her bed or chair for about 20 minutes at a time. After 20 minutes she was either fast asleep wherever she was sitting or a very (VERY) unhappy girl. She spent most of the day sleeping (or in and out of sleep).

Our Make a Wish volunteers did come...and I asked our hospice nurse to be here while they were here. I am a mom and I feel like sometimes I don't look at things very objectively. I am looking with my heart, as a mom, and I needed someone to look at it objectively and from a medical stand point. Maria did just that for me. So, after chatting with Hadley we all put our heads together and come up with a plan that I think will be great for Hadley.

The first thing is that her wish is being granted on SATURDAY! Our hospice nurse and our neuro-oncology nurse practitioner decided that it was very important to do this ASAP. So, on Saturday September 13th Hadley's wish will be granted.

Secondly, and this will be disappointing for a lot of people, we decided that a big party is just not in Hadley's best interest at this point. Too much stimulation causes a lot of anxiety and pain for her. I just can't do that to her so that I can know that she had a great party. What will be great for her right now is a soothing environment...so that's what we have to do. I apologize. Had we known that she would decline this quickly we would have had a party sooner.

So, Hadley wished to become a princess. Our wish granting team has promised to make it magical for her. I'm sure they will. We will have a small group of people here at the house to share the experience but, again, we'll have to try and keep it as soothing and calm as possible.

All of this just breaks my heart. We should have done this sooner. Much sooner. This is not the way I pictured her wish at all. I had hoped for her to come up with something and it be everything she could have ever dreamed of. I never imagined that we would have to put so many restrictions on her wish. It's a WISH. *sigh*

I am so thankful for this organization and the work they do. I am sure that her wish will be wonderful for her. I just want Saturday to come so I can see her joy and quit feeling guilty over this.

Please pray for our girl. She is declining. The changes from one day to the next are obvious. Hadley was only able to walk a few steps with assistance today...and even then she begged me to not make her walk...and told me she couldn't do it. This is so hard.

Our nurse will be back tomorrow. I'll update if there are any changes.

With Love and HOPE,
Angela

Sunday, September 7, 2008 8:30pm

Hello all,

Sorry for the 'silence'. Hadley was able to have some fun this weekend. Unfortunately, I think she really over did it. We tried to give her as little ativan and oxycodone as we could to keep her as alert as possible. This, coupled with exhaustion, made for some really tough times. Lots of tears and pain and anxiety. *sigh*

So, we are having to try and limit the number of people that are here at the house at a time. We need to keep our home as calm and soothing as possible for Hadley. She has a really hard time resting when there is too much excitement and she really needs to rest. We aren't asking for no visitors...we're just trying to keep the group size down so we can sit and have quiet visits. =)

Also, I hope you all understand that I'm not trying to be rude when I don't answer my phone. I am getting SO many phone calls =). I am trying to return as many calls as I can...but the weekends are especially chaotic...so it may be the middle of the week before I get to all of them. Thank you for thinking of us. We appreciate your love and support so much.

Hadley did great during the photo shoot this morning. The photographer was WONDERFUL. I have a feeling the photos will be amazing. We should see the disc etc in a few weeks. I will share them with you as soon as I get them. =)

We have seen such a huge outpouring of love this week/weekend. Thank you to everyone for your thoughts, prayers, cards, flowers, gifts, meals, etc. Really...thank you.


Please keep praying for our girl. Her pain and anxiety levels have been increasing pretty steadily. She is swelling quite a bit from npt being up and moving around. Also,she choked today and I am just begging God that she didn't aspirate some french fry. I am so broken hearted that we are here...but, she is ready to go. She knows she will be 'all better' when she gets to heaven. We've been whispering about dancing in heaven and how Stevie and so many other angels will be waiting for her. She smiles really big when I ask her if she'd like helping Stevie pick yellow tulips. She loves that Stevie will never tire of reading her stories...and she promised to whisper sweet I love you's in my ear from to time. Hadley has no regrets...no wounded relationships to heal. She has lived and loved fully. She is ready and lets us know several times a day. I am so thankful that, even in her most anxious moments, she is not afraid of dying. She knows that she will feel so much better...and can't wait. I love this girl so much. I don't think I could bear facing this if she were afraid.

I'd better sign off for now.

With Love and HOPE,
Angela

Friday 9/5 11pm

Please be praying for members of our Coast Guard family. We lost 4 heroes this week in a helicopter crash in Hawaii. My heart and prayers go out to the families of these 4 brave men. =(

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Thank you so much for the prayers for 'a better day'. Our prayers were answered. =)

It was still a rough day for Hadley...but, we didn't see any steep declines today, no major losses in function etc. She was in and out of sleep for most of the day but, when she was awake she was actually able to visit and let her funny personality shine.

She ended the day at about the same level of function she started it on. What a blessing. =)

Gramma and Grampa Fox, Auntie Hayley and Uncle Evan are all here. Grammy and Pop arrived early this evening. Uncle Colin is supposed to be here tomorrow. Hadley is loving seeing all of her favorite people. It really is a huge blessing. She did get a little overwhelmed at times and needed to rest...but, for the most part she just loved being the center of attention. Some things never change. =)

We got two beautiful arrangements today. One was an edible arrangement and the other was a beautiful arrangement of pink flowers. What a great surprise (and treat) that was. The fruit is absolutely delicious!!! Thank you so much!!! =) You really put a smile on Hadley's face. =)

So, Sunday morning we have a volunteer photographer coming to do 'sitting' with Hadley and the family. I'm praying all goes well and we get some amazing photographs. I've heard nothing but praises about this special woman's work so I'm sure they'll be gorgeous! =)

Make A Wish is coming on Monday to hear Hadley's wish. She isn't up to traveling anymore or doing much of anything that requires any stamina at all...so, most of the wishes we had in mind are out. (Hadley doesn't really grasp the concept of a 'wish' so we were coming up with backup plans in the event that she was unable to communicate a wish.) Unless Hadley comes up with something else I think she is going to be wishing to "BE a princess". I feel like my time with her is much more important than planning a party for her so I'm going to hand over the reigns and hope that Make a Wish is able to pull off a grand coronation ball for our girl. I'm sure they will make it truly magical. At this point the plan is to keep her 'ball' on her birthday as scheduled. September 27th. I'm not sure where/when they will want to have it so please be watching for an update here. I will let you all know the exact address and time just as soon as I have it. The invites are all on top of the fridge ready to go out...but with the week we've had I never mailed them...worried that we may be canceling etc. I'm going to wait and make sure that Make-A-Wish doesn't need them for anything...and then I'll mail them out. They already have postage and are stinkin' cute. I just don't know how accurate the details will be. Thank you for being so understanding. Like we Coast Guard wives say Semper Gumby (the Coast Guard's creed (?) is Semper Paratus).

Please continue to pray for our sweet girl. She brings so much joy and happiness to our lives. It hurts to see anything but joy and happiness in hers.

With Love and HOPE,
Angela

Thursday, September 4, 2008 10pm

Another hard day. Hadley did manage to get some smiles in though! She always finds a way. =)

Wednesday 9/3 11pm

Thursday (12 noon)

This morning brought a bit more heartache and lots of joy. Hadley was able to visit her beloved Teacher Mel and company this morning!!! She lasted about a half an hour before she was too worn out to even walk to the car...but, she was able to go. She was THRILLED. She loves Teacher Mel's class and had a blast while there. She drew a few pictures and played with Play Dough with Bingo and had a smile on her face nearly the entire time. This made my day. Completely lifted my spirits. I love to see her with a smile on her face.

Unfortunately that half hour was just too much. I wound up carrying her to the car (she weighs in at 88.6 lbs now, so that's no small feat.) and she was asleep before I even got to the car. Then she cried for about an hour and a half. More of the sort of instinctual type wailing like yesterday.

She is resting quietly now...and I hope she wakes up feeling refreshed.

She is barely able to walk now...although she does still try and take off running every now and then. This scares the bejeezus out of me and I explain to her every time that I don't want her getting hurt. *sigh*

Today while she was in her class she made me leave. *snort* She kept saying "goodbye mommy...goodbye." She really just wanted to do something normal I think. So I went and sat outside the classroom and let her do her thing. About 20 minutes later she was upset and wanting to know where I was. Poor girl. I have no idea if she completely forgot asking me to leave or if she just thought I really did it. Huh?!?

Anyway, the doctor from hospice is coming out to see her this afternoon. The rest of our hospice team is pretty concerned about her and they want to see if there is anything we can do to help her.

Please pray for our girl.

Angela

I almost forgot to add that I bought a recliner today for Hadley's room. She loves being rocked and we don't have a rocker. I figured a recliner would be the most comfortable for both of us. So, thank you to those of you who have donated to Hadley's fund. You helped us buy something very comforting for her!!!


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Hello all,

First, thank you for stopping by. I know that 'being here' is not easy. Nobody wants to be reminded that bad things happen to innocent people. Especially children. So, thank you for hangin' in with us.

This is the first chance I've had to sit down and update...I know a lot of you have been waiting.

I wish I had better news to report. Each night I go to bed thinking "I'm sure tomorrow will be a better day." Similar thoughts get me through the hard times during the day...I just keep thinking maybe she's just having a bad day...surely, tomorrow will be better. Sadly, though, it just hasn't happened, yet. Each day is worse than the previous. Each day, each hour really, she declines a little more. It is heart breaking. I hoped for so long that 4 1/2 years of fighting this beast would be the hardest thing I would ever do. Not by a long shot. Not even close.

Hadley slept well last night with the help of her new bed, ativan and pain meds. *yay* I had to wake her at about 7:40 to take the boys to school. She was very sleepy still but seemed to be in a decent mood. She drifted in and out of sleep for the next few hours...and then was wide awake for our hospice nurse's visit at 11:30am. She walked for the first today during that visit and was very unsteady especially when standing still. She needs assistance to walk pretty much anywhere now though. She just doesn't have the balance or coordination to move around safely on her own. We are still waiting on the OT to come by...but, our nurse does think that a walker would be good, especially for around the house. It might, at least, give Hadley back a little feeling of independence. Tim (our social worker) also stopped by to chat about the school situation. This is something that is VERY important to Hadley and Tim has done an excellent job of helping us make it happen for Hadley. These hospice folks are earth angels! So, that was the hospice visit.

Hadley seemed to be doing well and I needed to grab a few things at the store so, after the hospice visit, Hadley and I headed over to Target. We only had a few things to grab and it was a quick trip. Hadley did NOT tolerate it at all. She was a mess. I wound up having to carry her out of the store. She was sobbing and saying she was scared...and was very upset that she wasn't at school. From this point on she spent most of the day inconsolable. She sobbed and cried most of the day. If I left her side or she heard a noise or she closed her eyes she was just a wreck. There was nothing I could do to make it better. I felt awful. Absolutely awful for her. I tried getting her to sleep with no luck at all. At 3 we went and picked the boys up and she just continued to sob about nothing and everything. She clearly had no control over it. This is so out of character for her...it was just devastating. At 4:30 we finally gave her another ativan (an hour earlier than we are supposed to) and it helped a LOT! She was finally able to calm down a bit and even take a little cat nap. She did get agitated several times before bed...but, nothing like the rest of the day. Her behavior was very hard for the boys to understand/take in. They were both so worried about her that they insisted on sleeping in her room. Keegan did admit to me that he is afraid she will die and he won't be able to be with her or say goodbye to her. I can't even explain how hard that was for me. So, now, all three of my monkeys are asleep in Hadley's room. We convinced the boys to camp out on the floor...and Hadley is in her bed. Brandon and I had to lay down with them to get them all asleep. Today was hard for me...I can't imagine being a child of their ages and trying to absorb this. *sigh*

She is now in Pull-ups after a very upsetting accident this afternoon. She peed in her pants and was so upset about it she begged for pull ups.

Like I said yesterday...I really didn't think this would all happen so quickly. =( We are really still in shock. We knew that once we started seeing a decline it would probably be fairly rapid...but, I guess nothing can prepare you for this...and we really thought we'd have more time before we saw the decline.

So, for now we are keeping her party the same. I will be contacting our church tomorrow though, about possibly having it there. I'm hoping that it would offer more flexibility and would cost a LOT less. So, if you are planning on attending keep an eye out for updates on the location. The date and time should remain the same though.

Please keep our girl in your prayers. She is such a trooper...she does still find bright spots in each day. She truly is my hero. Even in her hardest moments I'm quite sure that she handles things much better than I ever could. I love her so much...we all do.

I'll post a few pictures here. If you're looking for the boy's first day of school pictures please go to our family blog at: www.FoxFamilyFive.blogspot.com


With Love and HOPE,
Angela

Tuesday, September 2, 2008 3:30pm

I came back to add something. Not everyone will want to read it but, it's information that some may want to have/find helpful. Many people are blown away by how great Hadley looks (as are we). She does not look like a dying child. So much so that even we are having a hard time really believing that we are 'here'. Anyhow, this is a loose guideline or timeframe for patients with brain tumors who are dying.

http://www.brainhospice.com/SymptomTimeline.html


3-6 Weeks Prior to Death

Motor
Increasing weakness on the affected side
Falling due to resistance to accept help
Need for more assistance with walking, transfers

Urinary/Bowel
Urinary/bowel incontinence may begin

Cognitive/Personality/Speech
Confusion and memory loss
Harder to sustain a conversation
May say some odd things that make you think "Where did that come from?"
May ask less about the next treatments or appointments
May ask clear, rational questions about death, arrangements, etc.

Physical
Increasingly tired, more easily "wiped out" after simple activities or outings
Headaches may indicate increased swelling
More likely to nap or to phase in and out of sleep

2-3 Weeks Prior to Death

Motor
May begin to see weakness starting on the non-affected side
Affected hand may curl in or be kept close to the center of the body
Legs begin to buckle, eventually leading to dead weight when attempting to stand
If still walking, may wander around the house a little, as if restless
May find it difficult to hold the head up straight or may slump over

Urinary/Bowel
Urine becomes dark (often described as "tea-colored")
Less warning before urination (more urgency)

Cognitive/Personality/Speech
Less interest in matters of the home and family, hobbies, or world at large
Detached, without curiosity
Harder to have an effective adult-peer conversation
General restlessness/agitation
Word-finding difficulties (conversation may be very slow)
Confusion over what time of day it is (sundowner's syndrome)
Speech may be slurring or trailing off, unfinished
May begin saying things that sound like awareness that time is growing short
May begin to seem more "childlike"
Confused by choices; yes/no questions seem to work best

Physical
Losing interest in transferring or leaving the house
Seems to feel safest on one particular piece of furniture
Begins to have problems swallowing, if not already
Appetite may become sporadic
May be sleeping 20 hours a day, with short alert times between sleep
May doze back off after eating
May describe vision changes such as double vision, loss of peripheral vision, or black spots
No longer interested in activities that require close vision, such as reading

1-2 Weeks Prior to Death

Motor
Often, completely bedridden
Younger patients may still be stubborn about getting up, though requiring assistance
May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly

Urinary/Bowel
Usually incontinent by now
May continue to express urinary urgency, without producing anything

Cognitive/Personality/Speech
May find loud or multiple sounds irritating
After waking, seems confused for several minutes
Staring across the room, up toward the ceiling, or "through" you
May look at TV but seem not to be watching it
May make mention of "getting ready" or "having to go," without knowing where
May refer to travel, packing, or gathering clothes
May talk about tying up loose ends (specific to the individual)
May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)
Communication seems to take more effort and makes the patient winded or tired
Doesn't initiate conversation as much, though still giving brief responses to questions
Agitation may build
Likes to keep the primary caregiver in sight and may panic when he or she is not in the room
May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)

Physical
Sleeping "almost all the time"
Can sleep even in a room full of activity and noise
Harder to rouse from sleep
Brief, scattered periods of alertness
Increased difficulty swallowing pills or liquids
Vision deficits increase
Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"
May reach toward the head during sleep (may indicate headache pain)
May have a distended abdomen
Vital signs are likely to still be good
May begin to have need for pain management

5-7 Days Prior to Death

Motor
May restlessly move the legs, as though uncomfortable
Most patients would no longer be leaving the bed by this stage
May reach up or out with the arms
May pick at the bed linens as if covered with small objects

Urinary/Bowel
As liquid intake decreases, output also decreases
The bowel becomes quite sluggish and there may be few/no bowel movements

Cognitive/Personality/Speech
Minimally responding to caregiver's questions
May begin sentences but not be able to finish them
May say things that are impossible to make out or things that don't make sense
May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")
May continue to seem restless and fidgety, as if late for something
May be irritated by strong sounds or odors

Physical
May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours
before death
Decreasing intake of fluids
Administration of meds becomes harder or impossible
Dosing of meds becoming sporadic due to sleep schedule
May find it hard to clear the throat as mucus increases
The voice may lower and deepen
May have a wet cough
Vital signs often still good
Nearly always sleeping or resting
May be uncomfortable being moved during clothing or linen changes
Dramatic withering of the legs due to inactivity (skin 'n' bones)
May have a low-grade fever

2-5 Days Prior to Death

Motor
Motor movements (eg, waving or hugging) are likely to appear weak
Unable to help the caregiver by leaning or moving during linen changes

Urinary/Bowel
Bowel activity likely will have stopped
Urine output will lessen considerably
Urine color usually lightens

Cognitive/Personality/Speech
Very little interaction, often no initiation
Speech may be quite slurred and hard to understand
May sit in the room with others and say nothing for hours
Could be described as "neither here nor there"
Restlessness and agitation give way to calm

Physical
Hands and feet may become cool
Forehead and cheeks may be warm or hot
Thighs and abdomen may be warm or hot
Hard to keep the eyelids open, even when awake
May spend a couple of days with the eyes closed, even though still slightly responsive
Minimal interest in food
May turn or clench lips to indicate refusal of food or pills
May seem unaware of how to use a straw
May have had last decent fluid intake
May bring mucus up into the mouth with a productive cough
Last Decadron dose may be administered (either intentionally or due to difficulty of administration)
Some drugs may be given only by suppository or dropper now
Vital signs often still normal, but some report cardiac changes (eg, racing heart)
*sigh*

It seems every day has new challenges that I'm not ready to face. Our hospice workers and the team up at Doernbecher called and asked if we'd considered moving her party up given her recent decline. *sigh* Apparently they think waiting until the end of the month is pushing it a little. I'm not ready for this. Not at all. I thought we'd have a lot more time than this...

Hadley has a script for Ativan now. The physical decline she's had coupled with her, well, being a kid and wanting to do everything she used to has made for some pretty messy anxiety issues. So, we're medicating. I had hoped to put it off longer...or not have to do it at all...but, this is what's best for Hadley. Her medicine cabinet grows...and I feel like we're losing her one piece at a time.

Brandon is in disassembling her bed because hospice is having a hospital bed delivered in the next few hours. She's had some pressure issues that have lead to increased headaches and even a 'bulging' right eye. So, it's time to sleep on more of an incline to help keep her comfortable. I'm a little freaked out about this...Hadley is ecstatic. She LOVES hospital beds. *snort*

We had an appointment this afternoon with our family doctor to re check her fingers and review the xrays. He said the radiologists agreed with the ER docs that the breaks are subtle. They should be healed up in about 4 weeks...but he wants to recheck and do another xray in 2. As I stood there making the appointment I wondered if I even should.

I know this post is really, really negative. I just needed to say all these things..then I can continue on. I'll update tomorrow with Keegan and Liam's first day of school pics etc. =)

With Love and HOPE,
Angela

Sunday, August 31, 2008 6:30pm

The Hadley's Heroes Store is back. There are still a lot of the older products...and a few new ones!!!

I had planned on keeping this 'graphic' a secret until the ball (it will be used on a party favor) but, it's just too sweet to keep to myself. I'm not very good at surprises. =)

Anyway...check out the store:




Hello all,

We had a great time at the Circus. =) There were a few 'hiccups' with the tickets when we got there...but, the concierge at the Rose Garden Arena was wonderful. We wound up with our own suite and an excellent view of all the excitement. =) We ate cotton candy and tons of popcorn. It was SO much fun. We are so thankful for the opportunity. It was just what our family needed after a physically and emotionally exhausting weekend. Thank you to The Children's Cancer Association, the donor(s) of the suite, and to the kind staff at the Rose Garden. http://www.childrenscancerassociation.org

Unfortunately, today wasn't quite as much fun. Hadley fell at church this morning. There was quite a bit of swelling and bruising and Hadley was still in pain after a dose of Oxycodone. So, I decided I should call our hospice nurse and see what we should do. We wound up going over to the hospital for an X-ray and sure enough she had broken two fingers. Her thumb and index finger of her left hand. Poor kid. She and the doctor and I decided that it is time to use her 'stroller' a little more when we're not at home. I hate to restrict her like that since she's still capable of walking...but, she just isn't safe. I can't keep letting her get hurt like this and holding her hand constantly doesn't help much either. *sigh*

Alrighty, well...I'm sure there is something I should be doing. Laundry, cleaning, you know...really fun stuff. =)

Thank you for checking in and praying for our girl.

With Love and HOPE,
Angela

Friday, August 29, 2008 9pm

Today was a hard day. A really hard day. I feel like we're having a lot of those lately and am ready for a good day.

Hadley had a rough night. She just couldn't seem to stay asleep. She doesn't complain of pain often and in my lunesta haze it didn't even occur to me that pain could be the cause of the problem. *sigh* So, neither of us slept much last night. Today was just trying. I was/am a wee bit grumpy (ok, a lot grumpy). Nothing wanted to go smoothly at all. It was just frustrating. It doesn't help that I'm on emotional overload. *sigh*

We made a quick trip over to Target to grab PE shoes for the boys (they can't wear street shoes in the gym) and a few other things. Hadley still hasn't quite fully grasped that she is losing function. She tripped and fell and a very kind, but not so soft, end cap broke the fall. She walked out with a bleeding fat lip, a loose tooth and a black eye. My poor girl just can't catch a break.

We did get some good news though. =) Our hospice social worker contacted the Children's Cancer Association for us to help out with communicating with Make a Wish etc. A VERY kind lady called today and said she had spoken with Make a Wish and Hadley IS cleared (eligibility wise) for a wish...and we should be hearing from them soon about getting that process moving along!!! She actually chatted with them about Hadley's delays and differences as well and was assured that even if Hadley needs a little 'help' deciding on a wish they will work with us. =) **YAY**

As if all of that isn't enough she also told me that someone had just donated a 'sky box' (not sure if that's what they're still called) for the Saturday night performance of Ringling Bros. and Barnum & Bailey Circus...and she wanted to know if we wanted tickets!!!!!!!!! =) Can you believe it??? Brandon has duty this weekend but, he talked to his command and they are letting him come with us! =) We're going to the circus tomorrow night!!! =)

We're also planning on taking dinner down to the station beforehand and eating with Brandon's duty section. It'll be our first time down there so it should be fun.

So, hopefully tomorrow will be the good day I've been hoping for! =) Let's HOPE so anyway. =)

Hooray!

So, there you have it. The good the bad and the ugly (or at least a little banged up).

Please keep praying for our family.

I'll post pictures from the circus on Sunday. =)

With Love and HOPE,
Angela

Thursday, August 28, 2008 1pm

Hospice has come and gone. Hadley is officially a hospice patient. It went well. There were, of course, some tears. Hadley was cheerful and bright. She did start raging around 11am (right on schedule) because she was ready to go back to bed. Other than that she charmed everyone, as usual.

We met with our nurse, Maria, our social worker, Tim, and our fellow whose name I am not recalling. How embarrassing. Maria is sweet, quiet, a great listener, very patient with Hadley. She notices things that other people may miss. She has a calming presence and a tender heart. She mentioned a daughter but not her age. I wonder if this will be hard for her. She is everything I would have asked for. Although, I wonder if there are any hospice nurses out there who aren't amazing people. It takes a special kind of person, for sure. Tim is just as wonderful as Maria. He took time with the boys and followed Hadley around wherever she wanted to lead him. She was most proud to show off her stash of "vanilla milk" (Ensure) in the pantry. He has a calming presence and truly wants to help. He is already at work helping us with what we need to do for Hadley. I am so thankful for these people. So sad to meet them under these circumstances. This seems to be a recurrent theme in my life. The past 4 1/2 years have brought some really amazing people into our lives...it's too bad it took a brain tumor for us to all find each other.

Hadley's new 'terminal diagnosis' is Bilateral GBM. Bilateral: involving both the right and left hemispheres of the brain. GBM: GlioBlastoma Multiform. The last time I saw the acronym GBM on one of Hadley's medical records was when she was first diagnosed. It was listed as the most likely tumor type after her initial MRI. I didn't get the record until a few months after diagnosis...long enough for me to learn that if you had to have a brain tumor you didn't want a GBM. I remember feeling so relieved that hers wasn't. It was the first time I had seen the word "terminal" on any of Hadley's records and it took my breath away. No matter how much you 'know' in your head...you just can't prepare your heart for stuff like this.

The hardest thing came after the visit when everyone had left. I was looking through our folder of documents and info. There is a section on the back of the big info book for the team to write down their names and the contact number for easy reference as well as a few other numbers. At the bottom there is a spot to fill in the funeral home/mortuary and their phone number. Tim filled in "TBD". This hadn't even crossed my mind yet. We have to find a funeral home. *sigh* While I know it's not something we have to do right this minute...I want to get it done. I don't want to wait and have to do it later. Or worse yet have someone else get stuck doing it. I can't believe we are 'here'. My heart is so broken.

Tim is going to follow up with Make a Wish for us. He is also going to be contacting Hadley's school she attended for Kindergarten. We are hoping to be able to enroll her there and let her attend part time/as much as she can tolerate. I'm pretty confident that he can help us make this happen. She would be in the same classroom she was in for Kindergarten. Teacher Mel would be her teacher. If it were up to me I'd keep her all to myself and not have her go at all. But, she loves school and really wants to go. I'm willing to honor that...even if it means less time with her. =(

The weather is nice today. I'm thinking about going and picking up some hanging flower baskets for the front porch. It needs some cheer. =) We also need to do back to school haircuts. The kids are all looking a might bit 'shaggy'. =)

Please keep our girl in your prayers.

With Love and HOPE,
Angela

Tuesday, August 26, 2008 7pm

We made an unexpected trip to our family doctor today. Thank goodness for last minute appointments! Hadley woke up with a swollen bottom eye 'lid' yesterday and complained of pain all day. She rubs it pretty regularly because of her vision and ocular muscle issues so I thought she'd just irritated it and it'd go away. Well, today she woke up and it was even worse and she was even more insistent that it hurt. So, I decided to call the doctor's office instead of waiting for the hospice nurse on Thursday. Her appointment revealed that she has some kind of a weird infection in her right bottom eye lid and her right ear. ??? Her left ear and eye are fine. Mysterious? Yes. So, the doctor was a little baffled...and put her on 10 days of a sulfa antibiotic. There was some mumbling about MRSA infections...but, from what I gather it was just her thinking out loud about which antibiotic to choose. Oy. This girl...it's always something.

When we stopped at the pharmacy to pick up her antibiotic I actually remembered to ask the pharmacist for a supplement recommendation to try and prevent the accompanying yeast infection (which Hadley is prone to for some reason and antibiotics just make it even worse). I usually forget about it until she is miserable and I feel like a terrible parent. Anyhow, for those of you who don't like yogurt or want to be extra certain to get enough of the probiotics to try and prevent yeast infections there is an Acidophilus supplement! Hopefully it works so my sweet girl doesn't have to be any more uncomfortable than she already is. Urgh.

So that is today's news.

Tomorrow afternoon we have testing for the boys at their school. Thursday we have a couple hours with the hospice service for intake in the morning. Then in the evening we have parent info night at the boy's school. Friday afternoon we have a special VIP night at the zoo through Doernbechers. =) *YAY* We even get to get into the Dinosaur exhibit for free. The boys are going to flip their nuggets!!! =) Saturday we may be going to the beach with some friends. Brandon has duty so it depends on how Hadley is doing etc. I'm not sure wether I want to try it on 'my own' with all three kids or not. The beach would be super fun though. =)

The boys start school a week from tomorrow! Where did the summer go? Seriously.

I'd better get going. Lots to do...always. =)

With Love and HOPE,
Angela

Saturday, August 23rd 11pm

I wrote this on Thursday. Sorry for the delay. I guess I just needed some time to process before posting.

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,
Angela

Saturday, August 16th 10:10pm

I know I updated yesterday and I don't have any information to give you on Hadley. I just had to come here and leave you all a little note though. I've been sitting in my mom's den for about an hour now looking through Hadley's PayPal account. I decided I needed to print out a basic list of donations recieved and hang it in my den at home so I can start getting thank you cards out. I beacme a little overwhelmed with how many people have shown SO much kindness to our family. Most of them are people who have never met any of us in person,some are family and friends, some are families who have had similar journeys to ours, some are Coast Guard family from acrross the US and some are merely friends and family of our friends and family. All of these people were touched by our sweet girl and chose to share what blessings they could with us from their far away location. I got to thinking about how many more are praying for our girl and our family and it was truly overwhelming. There are so many people from all walks of life and all areas of the country (and beyond) who are using their gifts and talents and what they've been blessed with to bless our family. That is amazing to me...much more amazing than any dollar amount sitting in an account. It is easy, in this day and age, to become hardened and cynical...to forget that there is goodness, love and generosity all around us. There are people who will reach out and help a friend or even a stranger. It always softens my heart and makes me all warm and gushy. Thank you for reminding me of this and for blessing our family. I am truly thankful. We all are. In fact, Hadley was showing off her Leli Kelly's yesterday and someone asked her where she got them and she grinned really big and proudly said "My friends all bought them for me!" She knows you are all out there thinking of and loving on her. Thank you!!! =)

Alright Folks. I need to head to bed. The kids and I are headed back to Portland tomorrow. We've had a long weekend jam packed with summer fun and I am beat. =) I LOVE summer. I'll fill you all in on the weekend after I'm home. Unfortunately I forgot my camera. D'oh. I never do that anymore...and this week I did it twice. I forgot it for the zoo trip too. Ugh. I need one implanted in my hand, or my forehead. =) Have a great week ya'll!

With Love and HOPE,
Angela

Don't forget to email me your address if you'd like an invite to the ball! =)

Don't forget to check out and support Pink Sky Project www.PinkSkyProject.com A book inspired by my cousin Stevie, who left her body at 19 after a long battle with a brain tumor, and authored by her mom, Gina. It is amazing. Any funds donated or books purchased will help put copies of the book into the hands of families who are in need of it free of charge.







**************Also, if you happen to be the mom I met at the zoo. I think this is where our stroller was purchased: http://www.adaptivemall.com/mainbug.html#ITEM. Central Church of Christ purchased it for us but, I'm pretty sure that is the site I directed them too. Hopefully that's a start for bargain hunting anyway. =) Good luck and feel free to email me. I'd love to get together for a playdate some time. =)

Thursday, August 14, 2008 2pm

I ccan't figure out where the speel check is on my mom's computer so, please bear with me. =)

Howdy ya'll,

I appologize for the span of time between updates. We should have had our new modem and internet service hooked up by now...but, you know how things go in our house. I think we should start a new saying "Fox's Law". *ha ha*

Hadley is doing 'well'. Like I said before I don't really know how to answer this question anymore. She doesn't look how most people would think a dying child looks...so it's still hard to really wrap our heads around what is happening. She has times where she feels good and you may not notice much of a change from several months ago. But those times are short lived and she winds up exhausted and not feeling well if she pushes to hard. We are back to using her stroller a great deal of the time and most of her nourishment is coming from ensure. The only food she'll really eat is her favorite meal from McDonald's-Chicken Meat Nuggets (*ha ha*), fries and a sprite (this is the Big Kid's Happy Meal). She asks for food at home still but just doesn't eat it. Maybe a bite of oatmeal or cereal but no more than that. So, I've gone back to buying ensure. Thank goodness Ensure is cheaper than Pediasure and on top of that there are store brands that are cheaper still. Her current favorite flavor is vanilla. This makes me chuckle because when she was younger she would drink chocolate and chocolate ONLY. If we kne she was going to be in the hospital I would have to call ahead and jump through a gazillion hoops to have them special order chocolate because all they served was Vanilla. *LOL* Oy. The things we do folr this girl. =) Anyway, with a lot of rest and what some may consider baby-ing, she is holding her own. We are really just letting her lead her day and activity level and that seems to work.

We went to the zoo with some friends yesterday and had a lot of fun. The zoo and Children's Museum were PACKED so we wound up parking down near the Rose Garden and riding the zoo train back up. Hadley walked for the first bit and actually enjoyed and was interested in the animals! Usually she is not a big fan of the zoo, not by a long shot. =) I had to wonder if she 'knows' that she needs to take this all in now. I probably read too much into things. Anyway, the boys and Aubrey and Daisy were running through the zoo long after Hadley had tired out and retreated to her stroller. It was a hot day so all the kids (and adults) loved the misters and commiserated with the lazy animals. =) We ate blue sno cones and had a lot of fun. All the kids hadd blue mouths and faces and Hadley had dumped blue sno cone over the top of her head and all down the front and back of a white t shirt. *ha ha* Only Hadley. I really thought the T shirt was a goner but, it actually came out in the wash. Does it make me an unfit homemaker that I was 'secretly' disappointed. What a fun stain. Surely it woould make me smile for a long time. I may have to start ironing all Hadley's stains before washing. =) *wink*

I finally have insurance authorization and an appointment scheduled at Doernbechers. *YAY* So, next Thursday Hadley and I will go meet with one of our favorite Nurse Practitioners and get caught up and start setting up home care services. I'm sure we'll discuss another MRI as well. With school looming around the corner I find myself really torn on how to handle it. Hadley loves school...absolutely loves it. I can't see her handling a full schedule at all. It would be nice to have a better idea of how quickly things are progressing before making a school decision. Brandon and I will have to discuss it more and then we'll talk to Hadley about it. I know the procedure and anesthesia don't bother Hadley at all. She LOVES getting MRI's. I just hate to see her get poked etc if it's not neccesary. We'll see. I'm thinking we may be leaning toward it though because of her vomitting etc. It may help us make a decission about steroids. *ack* I hate choices with no clear right and wrong.

Well, we're at Grammy and Pop Pop's for a few days. The Grant County Fair just started and we're going to try and have some fun. =) I just have to figure out a way to keep Hadley cool. =)

I'll update again soon. Don't forget to email me your addy if you'd like an invite. I've had a few people ask for an invite even though they know they can't make it to the party. That is absolutely FINE with me. =) I'm ordering a lot (gotta love VistaPrint). =) FoxiFamily@yahoo.com

With Love and HOPE,
Angela


PS. My doc gave me the all clear on my ears again. yay. AND, he gave me some Lunesta to try. Oh my goodness. I had forgotten how great a good night's sleep feels. WOW! =) He said that it sounded like I had an allergic reaction to the trazodone. My first drug allergy.

Wednesday, August 6, 2008 8:15 am

***Finally posted Thursday at 10am***

Hi all,

Just a quick note this morning because our internet is pretty spotty for a few more days. Our things were delivered on Monday morning! =) Brandon had to work all day yesterday but, I've been working really hard to get things unpacked so we can get settled in. The kids are all really excited to see their things again. Hadley just about hugged the mover when he carried in baby Lola's crib. She screamed and got very excited and then said "Yay, Baby Lola's crib. Now she doesn't have to sleep in her invisible crib anymore! Yay!" =) She's so funny. That's the first I'd heard of an invisible crib. The boys were very excited to see their bikes and all their toys.

We haven't heard from the doctor's office about the referral back to Doernbechers or from Make-A-Wish yet. I'll let you know when we do. There shouldn't be any problems with either referral, it just takes time.

Thanks for checking in and continuing to pray for our girl. Don't forget to email me with your address if you'd like an invite to the Royal Ball! FoxiFamily@yahoo.com

With Love and Hope,
Angela

Friday, August 1, 2008 1:40 AM

Hello,

Yes, it is almost 2 am, and I am still awake. Oy. I had a bad reaction to the trazodone (for sleeping) last night. My friend pointed out that it is metabolized in the liver...and since I have no gallbladder I probably just had a hard time breaking it down and 'using' it. Regardless of why I was miserable all night long and into the morning. *sigh* So, I need to call my doctor and get something else...or just stick with melatonin for now.

Hadley had a really bad day yesterday. When I updated she had been asleep for over 3 hours. She would up sleeping from 10:30am-6:45pm and immediately vomited everywhere...then went back to bed around 8:45pm and was asleep by 9:15-9:30. She slept until after 8 this morning. After her marathon sleep yesterday (from 9pm-9pm she was asleep for 19 of 24 hours) she had a pretty good day today. She still clearly wore out fairly quickly but was able to push through it and play.

We went to the park with my friend Mollie and her girls. It's so nice to have people to hang out with. All the kids get along really well. Amazingly well really. Please pray for Aubrey and Daisy and their parents. Each time we hang out with them the kids get a closer and I can't help but worry about their girls and how Hadley's illness and eventual passing will affect them. There are so many hearts that are hurting for her, and for our family, that are already affected by her...it hurts me to think of all those that will miss her when she is 'gone'. I'm thankful that she has had the impact that she has...I just wish that she didn't have to go.

We have a busy weekend ahead. =) A few BBQ's and such and then some more painting, cleaning, etc to get ready for our household goods to be delivered. I'm pretty frustrated with the Army right now. The transportation office at Ft Lewis has to authorize the delivery of our things. Brandon has been calling and emailing them several times a day since Monday morning with no answer. *grunt* So, now we have a home and none of our things. Brandon called the moving company and they were willing to deliver on Monday for us...but, until we/they hear from Ft Lewis we can't do anything. Yeah, it's really frustrating. I feel like our things are being held hostage. *ha ha*. I think the reason the military insists that Active Duty members communicate with them whenever possible is specifically for situations like this. Brandon calls and has to be extremely respectful etc. I would be getting pretty snippy at this point. I like to think I'm a pretty patient person but this is getting silly.

So, that's what's going on here.

Please remember to email me your address if you'd like an invite to Hadley's Ball. FoxiFamily@yahoo.com

With Love and Hope,
Angela

Wednesday, July 30, 2008 2pm

Hello All,

Sorry again for the lapse in updates...and for leaving you with such a depressing one. Oy.

So, Hadley, how is she doing...huh. I'm not really sure how to answer that anymore. She has times where she seems to be doing great...and then moments, days really, that remind us that she is a very sick little girl. The last couple days have been fairly rough. She's been tired, wobbly and extremely grumpy. She has fallen repeatedly and I'm pretty worried that she'll wind up getting really hurt. I had to wake her for an appointment this morning and she went back to sleep as soon as we got home. She's been asleep ever since, three and a half hours so far. That's pretty much been the norm lately...she's literally had days where she's been asleep for the majority of a 24 hour period (19 1/2 hours one day). Of course I'd rather her asleep than awake and feeling bad, so I guess that's a blessing.

We had our appointments today. The lady in the medical office that handles referrals was working on Hadley's as we left today. She said she would call me as soon as she heard back from our insurance. As soon as we get the authorization we can make an appointment at Doernbecher and get enrolled in the home care program. They also said that since they are so close to us if we need anything at all and would rather go through them than Doernbecher to feel free to call any time.

We're seeing a different family doctor than when we lived here a year ago and I really like him and all his nurses and staff. They had already reviewed the records Seattle sent down for Hadley and were really 'all about' what I needed/wanted them to do rather than what THEY felt like should be done. I really appreciate that. The doctor actually treated me with a little respect and realized that I've been fighting this beast with my girl for over 4 years and kind of know her and her disease. So refreshing. All of that and because he had already reviewed her records he didn't make me repeat her entire history. I can't explain why but that is really hard for me to do right now...so that was a huge gift.

I also had an appointment to refill some meds. I also wound up leaving with something to help me sleep. *sigh* While not sleeping can be sort of productive it's not so good for my health or emotional well being...not to mention my marriage (since Brandon usually winds up taking the brunt of my grumpiness). I also had a 'burst' ear drum. I have chronic ear infections but have had them under control for a good year and a half or so. I've had a flair up since we were in Idaho ( I think it was all the swimming)...anyway, it didn't really hurt that bad to begin with but, 2 days ago the pain got worse and then went away. Well, I didn't mention any of this to the doctor because I thought it was cleared up. He looked in my ear and said "are you in pain?" *ha ha* I explained the events and he said he couldn't see very far in to my ear because it was so infected...but, his guess is that my ear drum ruptured. So, I have a Z pack and some drops. How I love Zithromax. I left with 4 prescriptions all together and Hadley left with none. Weird. *snort*

Well, our house is emptying out as I speak. We've started painting the downstairs (den, boy's room, playroom, family room and laundry room) and are preparing to start painting the main floor (living room, kitchen/dining, Master bed, Hadley's bed and spare bed). It's been a lot of work but, it's looking pretty 'cute'. We got magnetic primer and chalkboard paint for a wall in the playroom. I'm pretty excited about that. I may have to get more for other areas of the house if it works well. *snort*

I'd better run. I've got a ton to do. If you would like an invite to the ball (even if you know you can't make it) send your mailing address to me at: FoxiFamily@yahoo.com

Hug your babies extra tight.

With Love and Hope,
Angela

Friday, July 25, 2008 1:35pm

Sorry I haven't been very good about updating this week. It's been a really trying week. There's so much going on and I feel ill equipped to handle it all. Overwhelmed, that's the best way I can describe my general mood this week.

Hadley has continued to vomit in the mornings. It's not every morning...but, enough to make me think that it's not something 'normal' (non brain tumor related) going on. She's still napping every day. She'll either take one nap that's several hours or two shorter ones. She is taking 5 mg of Melatonin at night (Because she had been having problems sleeping at night) so I believe she's getting enough sleep at night. She has been complaining of headaches and has even started hitting herself in the head when it hurts too much. This is something we haven't seen since she was much younger/before the tumor was diagnosed. Her precocious pubery is rearing it's ugly head as well. I am at a loss as to what to do about that. We had decided to only add comfort related treatments from here on out and now we've got a little girl who is going through puberty extremely rapidly and may need to go back on steroids for hydrocephalus. I didn't want this. I knew this wasn't going to be 'easy'. I knew she wasn't going to pass away looking like a healthy child...but I don't want this. My heart is so broken and torn. I am not strong enough for this.

As most of you know we had a rental 'sittuation' when we moved. Our friends were moving away and we were going to be renting their home. Then there was a 'hiccup' in the plans and then get put off temporarily. So, instead of finding another rental we mutually decided to just tough it out and all stay in the house until their plans came together. They are heading for their new home August 7th. We are excited for them for this new adventure...and a little jealous of their destination. =) So, our rental sittuation is almost resolved...we should have our things delivered in a little over 2 weeks. Then we can start really getting settled in. =)

In the meantime we're trying to stay out of their hair while they pack etc. One of their dogs has decided that it doesn't want us around and bit Liam pretty good a few nights ago and Brandon last night. Brandon's was minor but Liam made a trip to the ER for antibiotics and to get cleaned up and examined. Luckinly his biggest wound was still small enough that it didn't need to have staples. They try and leave animal bites open as often as possible to help prevent infection so the doctors were a little torn on wether to staple it or not. Anyway, to say that there is tension at home is clearly an understatement. Hopefully things will calm down for all of us really soon. Brandon has duty this weekend so, he left this morning and we'll see him again Monday morning. It's not a good sign that I'm a 'single parent' this weekend and I'm starting it already exhausted. *LOL*

Hadley and I have appointments with our new family practice doctor on Wednesday morning. Hadley has to have a referal back to Doernbecher in order to enroll in their comfort care program. Hopefully we'll be able to get that done quickly so we can start figuring out more of a plan for Hadley's care.

Happier news is that I finally found a venue for the Royal Ball. =) There is information on the "Hadley's Magic" blog. Check it out. This also means that I can finally get the invitations together and sent out. If you'd like an invite and think I may not have your address please send me an email at: FoxiFamily@yahoo.com Until you get them the "Ball" is on Saturday, September 27th (late afternoon). I hope you all can join us! =)

For those of you who won't be able to make it we'd LOVE it if you could make a scrapbook page for us. We're having a scrap-guestbook at the party and would love for you to send a page to add to it. Once I get an album and know what size pages we'll be making I'll let you know.

I think that's all of the updating I have to do. I'll try to be more upbeat in my next entry. =) If you're really lucky you may even get some pictures. Ha ha. Thank you for continuing to check in on our family and pray for our girl. I really have no idea what we're going to do without her. *sigh*

With Love and HOPE,
Angela

Sunday, July 20, 2008 2pm

Just wanted to let you all know that Hadley woke up with "little owies" in her head...but NO vomit this morning. =) *Yay*


also...here's a slideshow from Fancy Hadley and Mama's Spa Day with Auntie Hayley. =) Auntie Hayley worked really hard that day (and all days) to make beauty. =) We were there for 5 hours getting 'fancy'. =) Thank you auntie Hayley for such a fun day. =)

Tuesday, July 15, 2008 9:30 pm

Here's the blog address for the magic days stuff: http://hadleysmagic.blogspot.com/

I'll still post stories and stuff here, but, it's a lot easier to keep track of everything and post pictures there. =)


I'm in the process of setting up a blog dedicated to "Magic Days" spending and Birthday Ball planning etc. Keep an eye on the page for the address etc. But, I couldn't wait to tell you that I placed an order at AmericanGirl.com today!!! Gramma and Grampa Fox got Hadley a "bitty baby" for Christmas and she's LOVED her Baby Lola. But, she has been asking for a big girl 'Merican Girl lately. So, here's what I ordered:

The backpacks are so that Hadley can carry her dolls while out and about. Since she only has the use of one hand carrying around a baby doll gets to be a bit hazardous...but, she always wants to bring at least one baby along wherever we go. This way she can! =) *YAY*

Thank you SO much for helping us grant her wishes. =) It means SO much to my mommy heart to be able to do these 'little' things for her.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


There are more coming from our 'spa' day, Leli Kelly delivery etc...but, here's a start:

Hello,

We are home safe and sound. We got home Sunday evening and have been trying to get back into the swing of the 'home' schedule. So far so good. =)

Hadley has been doing well. She's happy and feeling pretty well. I think she's still recovering from vacation. She's been watching a lot of movies and just laying around. She hasn't been sleeping...just seems tired and needs to relax a bit. We have noticed a few 'weird' things although, I've begun to think that nothing is 'weird' when you have a kid with a brain tumor. It seems that almost any symptom you could think of could be considered 'par for the course'. Oh well. Anyhow, we're thinking that the tumors in the thalamus and hypothalamus are really wreaking some havoc. She has had some wicked mood swings and her body temp seems to be much higher than usual. It just stays up...it doesn't come down. She isn't shivering or anything (like she has in the past with an 'acute' type fever) but, she does feel cold. It was fairly warm here today and she spent the day in a terry cloth sweat suit. I even found her laying (in sweat shirt and pants) on the lawn in the sun "because it's nice and warm Mama". She isn't sweating like you normally would when you're too warm...which is odd. We've also noticed she's started growing some things on her skin. She's got these little bump things around her mouth. I have no idea what they are. They almost look like big white heads but they're not. They're solid. Anyway, I've never seen them before. They're weird. And I noticed them. That's basically what I'm trying to say. She's also been holding the back of her head and complaining that she has 'big owies' every now and again. This is usually followed by crossing/wandering eyes and a complex partial seizure cluster. So, we are noticing changes. They are gradual and some are subtle but, they are there.

I haven't heard back from Make A Wish yet. I'm assuming it'll be in the next week or so. Hopefully. =)

I need to make a phone call to get set up with the home comfort care program at Doernbechers. I know it will be a 'good' thing for all of us. There are apparently a lot of resources to tap into as far as counseling and siblings programs etc. It'll also keep us away from the hospital and clinic as most of her medical needs can be taken care of at home. But, I'm just having a hard time making the call. I will because I know I need to. But, I'm not quite there yet.

I'll get the rest of the photos uploaded tomorrow. I haven't gotten them all ready yet. But I will. =)

We've got a camping trip planned for this weekend. We haven't been camping for over 4 years now. Our last trip was the weekend before Hadley had her first central line placed and started her first chemo regimen. So. we're long overdue. Our friends Jake and Mollie and their family are letting us tag along. =) Keegan and Aubrey are still best pals and Daisy has grown up SO much in the last year. They all get along so well. We have a lot of fun hanging with them and are so thankful for their friendship. =)

I am still working on reserving a venue for "THE " ball. =) I've had all kinds of fun ideas and have already started purchasing a few fun things. I just can't wait to make this magical event happen for my girl. =) I'm so thankful to all of you out there who have/will help us make SO much magic for her. =)

I think it's time to sign off for now. I'll try and get pics up tomorrow.

With Love and HOPE,
Angela

Friday, July 11, 2008 11:15pm

Sunday, July 6, 2008 6pm (mtn. time)

For I am conscious of my thoughts about you, says the Lord, thoughts of peace and not of evil, to give you HOPE at the end.
Jeremiah 29:11


I've been thinking of this verse a lot lately. It gives me a lot of hope. I've found peace in it for the past several years to get us through scary times. My cousin, Gina, passed it on to me...she had turned to it when she needed peace and hope through Stevie's brain tumor journey. When Stevie passed away, almost 15 months ago now, I was out looking for a card for Gina. I went several times and just couldn't fine one. Sympathy cards just seemed to fall terribly short of what I wanted to say and do. My heart and brain couldn't imagine enduring this kind of loss...and the sentiments found in sympathy cards just seemed like a slap in the face. Anyway, I stumbled upon a frame with this verse on it. I HAD to buy it. I, at the time, wasn't sure it would be recievd well. I mean, Steve and Gina had just lost their daughter. How could they even be thinking about the Lord having plans of peace and hope at a time like this? Clearly He hadn't heard their prayers at all. Right?!? That's where I have been for the last 15 months. A few days ago I read this verse again and found peace and HOPE in it. It is a different peace and a different hope but, peace and hope all the same. God never promised that we would be healed here on earth. He never promised to answer our pleas the way we would like him to. He just promises to listen and to answer. I HAVE to trust that. I know that there is a plan for Hadley. I know that God will make good on His promise. I know he will care for my baby girl. I know he will give her the life she deserves. I know that she will be okay, no, wonderful and complete and everything He wishes her to be. I am thankful for each day she has here with us. I am thankful that she is still enjoying her time with us. I am even more thankful that I haved the peace of knowing that she will be cared for (or won't even need to be cared for) in the next life. I will miss my girl for the rest of my life. I don't know for sure that my heart will ever heal. I'm sure it'll always feel broken in places. I'm sure everything will make me think of her...but, I need not worry about her well being. That is an amazing weight lifted off my mommy heart. I hope that verse can help bring some peace to your life...wherever you are and whatever your burden/worry is.


We are having a blast in Idaho. I think the kids have actually formed gills. Keegan is swimming around the pool with no lifejacket. Liam is a great doggy paddler and does really well with his jacket off too. He has gotten so brave and is jumping and DIVING off the side of the pool all on his own. He is a natural diver I tell you. =) Hadley loves floating and splashing. She got her pink highlights back and is SO happy to be 'fancy' again. =) The main picture was taken this afternoon by the pool. She had gotten tired in the pool and decided she was ready to get out. She went in the house and put on her flower girl dress from Auntie Hayley's wedding (it won't zip in the back of course) and a tiara. She was sitting in the little chair checking out her nails. =) She is so stinkin' funny. =) I love these kids so much. =)

Brandon and I had a great time at the wedding. It was beautiful and fun and everything a wedding should be. Congratulations, again, Nick and Colleen! Brandon and I even got a night away! We decided to stay in downtown Boise and Gramma and Grampa kept the kids. =)

SO, out of nowhere I had an 'idea' for the Magic Days fund. I was thinking about weddings and feeling a bit sad that I will never be "the mother of the bride" or get to take my girl prom dress shopping etc. We've made a tradition of throwing big parties for Hadley's birthday. We've never spent a huge amount of money on them...but we've always had as many people as possible and tried to make it all "Hadley". In that spirit I was thinking that maybe this year we should have a "Royal Ball" for her party. I mean really do it right and go big on everything. I love planning and organizing parties and I would LOVE to do this for her. So, what do you think? Will you be marking your calendars? =) I think she would really just LOVE it. =)

Please do be praying for Hadley. She has been complaining of headaches and pressure behind her right eye off and on. We've given her Tyenol several times but it takes about 500 mg before she seems to feel better. It does work though. I just hope it doesn't get worse quickly. =(

Well, I'd better run. It's dinner time and the monkeys are running wild. Thank you for your continued love and support. Your encouragement means so much to our family.

With Love and HOPE,
Angela

Monday, June 30, 2008 8:45 PM

Look at that ticker MOVE!!! You all are amazing. The magic fund has grown so much!!! We really need to figure out what kind of magic we're going to make with it. =) ~<3~ THANK YOU!!! ~ <3~



Here are the pics I promised. =) They're pretty self explanatory except two. One is of her nast bruise/scrape from the pool ladder. The other is her talking on my cell phone...with a mustache. The kids had all gone to bed. Just as they were finally quieting down and I thought they might be falling asleep I hear "MOOOOOOOOOOOM...Hadley drew with a marker!!!". So, I go in their room and sure enough she'd snuck a dry erase marker in bed with her and drawn a mustache on her own face. This kid always keeps us laughing!!! =)

Speaking of laughing, I have a story I have to share with you because it's just too funny and too Hadley not to share. We were running some errands and decided to stop in at Barnes and Noble (yes, again). Hadley had to use the restroom so she and I went. She came out and washed her hands and grabbed a paper towel to dry. The paper towel dispenser was an automatic one and every time you tear off a paper towel it spits out another one. Every time it would do this Hadley would toss the towel she was using in the trash and grab the new one...she did this about 4 times when I finally said "It's ok Hadley. You're dry, let's go." She looked up at me totally exasperated and said "They keep coming out and coming out." =) It was as if she didn't want to be rude by not taking the new towel. Funny girl.

Ok, now HERE are the pictures:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





Hello all,

I have more pictures to upload. I'll try and get to that tonight or tomorrow. =)

We had a great weekend. Brandon had duty so he left early Friday morning and got home around 9:30 this morning(Monday). Duty weekends are really long...but we managed to have fun. =)

It was freakishly hot (for Portland) and Hadley doesn't do very well in the heat so we did our best to stay cool. On Saturday we went and saw Wall E. CUTE movie. The kids and I all liked it. =) The kids swam in the pool some more and Hadley and I even snuck in a trip to the mall. We were in search of a pair of shoes for a wedding next weekend. We had NO luck but, she did find a very beautiful princess nightgown on clearance at the disney store. She was tickled...it is ALL girl. I'll take a pic once she gets it on tonight. =)

Sunday we went to church and then went to Grammy Christie and Grampa David's for lunch. The kids LOVE playing there and we had a great time. By the time we left the kids were all so exhausted from the fun of the weekend and the heat that they all fell asleep in the car. When we got home Hadley laid down to watch a movie. She watched Alvin and the Chipmunks but fell asleep...she got up momentarily so Makinna turned on Snow White for her (around 5ish) and she was down for the night. She didn't even wake up when Troy moved her into her bed for me. Poor dolly was exhausted.

Please check out the link to the Tupperware fundraiser. =)

We are just trying to live as 'normally' as possible...only, appreciating EVERY moment we have with our girl. The boys are talking more and more about Hadley being sick and the fact that she will die. I bought some books at Barnes and Noble this weekend but, we haven't read them yet. I had a really hard time buying them. This is such a big part of our lives and I want to be very mindful of how we handle all of this with the boys...so I needed to read the books in the store before I bought them. In retrospect I really should have just bought them and returned any that I needed to. Oh well. It was the worst trip to barnes and noble to date. I can't imagine what people around me were thinking.

I talked to Make A Wish this morning. They are sending paperwork to our doctors in Seattle to make sure we're eligible for a trip (of course we know we are...but they have to do that). They said to expect that to take 2-4 weeks and then they'll start working on getting an appointment set up to come out and meet us etc. So it could be a month and a half to 2 months before we even get her wish "in" and then who knows how long before it's granted. I'm sure that if it's looking like we need to do it more urgently they can expedite some of the process. But, for now, I think we'll be ok, Maybe it'll be cooler in Florida?!? =) I'll keep you updated as the process moves along.

Speaking of moving along...have you seen the magic days fund ticker lately??? Oh my goodness. I just can't even express how grateful we are for the generosity we've seen in the past few weeks. We've been overwhelmed with emails, phone calls, donations to the fund etc. Everyone wants to help in some way and we certainly appreciate it. I just keep thinking about the story I posted a few weeks ago. The one about 'suffering souls' coming to help people open their hearts and feel love and compassion etc. I am truly amazed by and thankful for all the love we have seen. Thank you so much. =)

The kids and I are leaving for Idaho on Wednesday. Brandon will join us on Saturday morning. He has to work on the 4th of July (busy day on Portland's water ways) so he'll be flying in and spending the weekend. His friend Nick, from High School, is getting married so we're going out for that. I'm sure we'll have fun. =) The kids are so excited to see Gramma and Grampa. =) At dinner saturday night Hadley said the prayer and she thanked God for Gramma's house. =) Sweet girl.

Alright. I'm off to get kids to bed.

Have a great week. I'll try and get pictures up before I leave Wednesday.

Angela

Thursday, June 26, 2008 9:45pm

Guess what? Hadley's "Magic Days" account has reached $1050!!! I am so grateful to all of you who have helped us out. We truly are, like so many families these days, living paycheck to paycheck...giving our girl some magic will be a lot less stressful with your help. Thank you for your love and generosity!!!


Also...***shhhh***...I just purchased some Lelli Kelly's on ebay!!! I don't know if any of you will remember but, Hadley has been begging for Lelli Kelly's since October of last year. They're pretty expensive (in my opinion) so I never bought them for her. She is going to be SO jazzed! =) I'll post more pics when she gets them in the mail!!! =) Until then I posted a pic above. =) Thank you for helping us give our girl a few of her favorite things! =)



Hello,

It's me again. =) We had another great day!!! the weather started out pretty 'iffy' but, the sun came out and saved the day. =)

I have a few more pictures. Yay. Expect a lot of them...I'm taking a lot these days so I'm trying to keep up to date on the uploading. Anyway, there's some really cute ones. At Collin's baseball game last night the club was selling raffle tickets for a 50/50 raffle. Hadley just HAD to have some tickets. Neither Brandon or I had any cash on us so Auntie Manda bought her some. She had no idea what the tickets were for but was SO excited to have them. =)

Wednesday, June 25, 2008 4:34 PM

I know I just updated yesterday but felt like it was kind of a downer of a post. So, I have some fun stuff today. I have more pictures but my camera is totally dead and I've yet to find a charger for it. I've moved on to using Brandon's camera now. =)

Yesterday, after Hadley's 4 1/2 hour nap we headed over to my friend Mollie's house so all the kids could play in the sprinklers etc. The weather was gorgeous (it still is) and all the kids played really well together and had a total blast! =)

Here are some pictures. I only took a few pictures because I didn't want to risk killing Brandon's camera in sprinkler 'spray' and I found it really interesting that the picture that I got of each of the kids caught their personalities perfectly. Here they are:

Tuesday, June 24, 2008 12:45pm

Hello,

We're still here plugging along. =) Hadley is still sleeping quite a bit and/or is exhausted. She is fast asleep as I type this. She does seem to be sleeping and resting quite a bit these days but, when she's awake she is 'herself'. =)

Yesterday we had a few weird incidences. If you know Hadley you are more than likely aware that she has an excellent memory. She remembers EVERYTHING. It's crazy. Anyhow, yesterday she could not recall the word 'cookie'. She finally got frustrated and said "what's that called?" and pointed to a cookie. It was a chocolate chip cookie for the love of pete. Hadley does NOT forget what that is. It was bizarre. Then, a few hours later, we were driving home from Keegan and Aubrey's swim lesson and she started screaming in the car...just yelping...I couldn't even figure out if she was scared or what was going on. Then she started yelling "my pants...my pants...my pants". The only problem was that she was wearing a little skirt and had been all day. When she finally calmed down she said "I forgetted my pants." I still have no idea what that was all about. But when I told her she had been wearing a skirt all day and that it has shorts under it and she had never had pants on she just stared at me like I was crazy and not understanding her. I wish I could have helped her. Once it was over she seemed to forget it had ever happened...I'm glad it didn't bother her all day.

We had weird little things like that happen all day. I'm not sure if I'm overanalyzing things or what...but it seems like her memory as far as word recall etc goes is really slipping.

Physically, she is really tired which always intensifies her left sided weaknesses etc. It's really a vicious cycle. She's tired which means her left side is even weaker which makes it harder on her body to do anything...which makes her even more tired which makes her left side even weaker. It's hard to sort out what is Hadley being tired and what is actually "true" worsening of her hemiparesis/hemiplegia.

Overall, though, she seems to be fairly stable. You wouldn't take one look at her and think "wow, she looks bad." Yet, at the same time she is declining.

Make-A-Wish called at the end of the day on Friday and I need to call them back. If I remember correctly it usually takes a few weeks to gather up all the information and get the volunteers out to the house to do the interview. If Hadley stays stable enough I'd like to wait until closer to her birthday to go to Florida. She doesn't tolerate heat well at all (vomiting, lots of seizures, etc) so the longer we wait the cooler it should be. On the other hand...I don't want to wait too long because I want her to really be able to enjoy her time there. I don't know. I guess we'll see how the next couple weeks go and decide then if we should pick a 'cooler' destination if we feel like we need to make the trip happen sooner. We'll see.

I also made a call to our NP in Seattle to talk to her about hospice etc. She is out of the office until after 4th of July weekend. I want to get hospice set up now, after seeking advice from some veteran parents, but need to figure out a few insurance technicalities first. So, we may be setting up hospice after the 4th of July or we may wait about 4 weeks so we can do an MRI (just to give us another peek at how fast things are growing (just so that we can know and try and plan accordingly) and then as soon as the MRI is done set up hospice. Once she is on hospice they will take over her care and be responsible for refilling meds etc.

Hadley's 'magic days' fund is growing every day. =) We still haven't figured out what we're going to do with it. We may take it and use it toward something 'big' or we may do several little things. When we start figuring that out and using it for things I'll make a list/post pics up with the ticker to let you all know how your kindness/generosity has helped put a smile on Hadley's face. =)

Please keep praying for our girl. She is such a sweetheart...at times I feel like I miss her already. I never really knew that was possible until now. She just brings so much humor and sweetness to our lives...it's hard to imagine what our family will be like without her. Please pray for our family. We are certain that Hadley will continue to be a bright little spirit even after she leaves us behind...but, I worry about the rest of us left here to miss her.

Thank you for your love and support. It means so much to me. Please know that what I type here is truly therapy for me. Your taking the time to read it and comment really does help me by validating my thoughts and feelings. I don't think that I could actually come out and say a lot of what I type here...so, thank you for the free therapy. =)

Love to all...

Angela

Thursday 10:45 pm

Hi all,

Sorry I haven't been updating more. I know you are all checking in regularly. Thank you for that. ((((hug)))) I have been staying off the computer for the most part. I'm having a bit of a hard time relating to people these days. To be quite honest I'm having a real hard time feeling sympathetic. I'm not really angry...I just feel sad. Moms are feeling sad that their kids are going off to camp and can't imagine how they're going to get through a couple days...and I am still trying to figure out how on earth I am going to get through the rest of my life without my girl. I know I will never be able to prepare myself...yet, I still feel like I have to 'honor' my feelings/fears etc. There are just some things you can't ignore. Anyway...if I seem a little distant or 'shallow" bear with me. I'm trying to keep things light to get me through. I don't really have the luxury of falling apart. I have to 'keep it together' for the kids and to get through all the craziness right now. I'll 'deal' eventually but, for the time being I have to just do what I have to do to get through. I hope that makes sense. =)


Hadley is doing ok. She is really tired and sleeping a lot. She's been sleeping about 10-11 hours at night and then taking a 4-5 hour nap during the day. Today she got up around 8 and by 10 she was trying to go back to bed. She just seems exhausted. She's really unsteady and off balance. She took a header at the park yesterday that ended in some pretty sad looking road rash on her shoulder. =( It was my fault. I knew I should stay with her...she was tired and wobbly...but, I didn't want to hover. She was trying to play with some other kids on the playground and I didn't want to interfere. I felt SO bad. She was crying big alligator tears and had that scared look on her face that we rarely see. =( It just made me so sad. Then we went to my sister Amanda's house for dinner and to visit. Hadley was heading in the front door and tripped and fell on a small step. She caught herself at the last minute so she didn't hit her head...but just as we were all about to scoop her up and coddle her she said "I tripped...it's my lucky day." It was SO funny. Perfect sarcasm. Just too funny. I love her so much.

I have to catch myself because I find that I am watching her like a hawk for signs of decline. I know once we start seeing a sharp decline we won't have long with her. I'm terrified every morning that she'll wake up and not be able to walk. I just don't even know what I'll do with myself. I wonder if I really have what it takes to get through this. So far I've been able to be 'brave' and strong...but when we really start seeing this tumor take over I have no idea how I'll get through it. I know I will...because I always do. This is my girl...I WILL do this for her and I will do my best.




On a much lighter note...

Keegan is taking swim lessons with his buddy Aubrey. He is LOVING it. =) I'm going to sign Hadley and Liam up for some as well...but, he wanted to do these with Aubrey...we'll do Had and Liam's later.

Brandon reported to his new unit on Monday and seems to really like it. He has been 'day working' this week...or as I like to call it 'civilian schedule'...but, will start in his duty section this coming week. He'll be 2 on/2 off. During his 'on' he has to be AT the station for 48 hours or on weekends it would be 72 hours. But, he'll have 2 or 3 days straight off. I think it'll be nice. He'll even have some weekdays off every week. =)

I'll update with some pics/video of Keegan's Kindergarten Graduation later. It was so stinkin' cute. =) I cried before it even started. What a sap. And, yeah, we hadn't really noticed until then how much taller he is than everyone else his age. Seriously...some of the kids were a head...maybe even a head and shoulders shorter than him. *snort*

Ok, I'm off to bed.

Thanks for stopping by. =)

Oh, and yes the new ticker is for Hadley's fund. We are saving money to use for whatever we can do to make the remainder of her time here magical. So far we've had $340 donated. =) We don't really have any goals about how much we want in the account...I just had to pick a number for the ticker to work. =) There is a link to a paypal account that you can donate to...or you can email me for our mailing address. =) I'm planning on getting a PO box but I haven't gotten around to it yet. =) When I get that set up I'll post the address.

Have a great weekend.

Angela

Sunday, June 15, 2008 8:30am

Happy Father's Day From Portland, Oregon!!!

We are officially finished with the first leg of our move. Phew! =) I say first leg because we're having a bit of a 'situation' with our housing situation. Wow, what a sentence. =) Anyway, long story short our things are all being stored for free by the military. When we figure out where we're going to be living they will deliver it all for us. =) For now we are staying with our awesome friends Troy and Shauna and their brood. =)

I caved and hired a cleaning lady to come and take care of the house in Washington. I was a little apprehensive about hiring someone to do something I am perfectly capable of doing...but, I'm so glad I did. =) She did an amazing job and I didn't have to stress it at all. Yay! =) Overall the move itself went as smoothly as it could have. We had great packers/movers and the same company is handling our stuff all the way through the move. =)



Hadley is still doing well. We have seen a fairly sharp decline in her strength and motor skills on her weak side. She's also started having some incontinence issues. I can't even remember the last time she had an accident so this is really weird for her. Poor girl. But, she's still just as happy as can be. =) What an amazing kiddo. =)

I'm going to be contacting Make-A-Wish this week. Since all the chapters are 'local' we decided to wait until after the move to give them time to complete her wish instead of trying to transfer it mid way. Unless Hadley comes up with something else I think we're going to ask to go to Give Kids The World/Disneyworld/The Beach etc in Florida. I think combining the magic of Give Kids The World and Disneyworld with Hadley's love of the beach/ocean will be just amazing for her.

I've got some pictures to share but I have to find a charger for my camera. Apparently I left it out and the movers packed it. =) So, when I figure that out I'll share some pretty stinkin' cute pictures with ya'll. Until then, here are a few pictures of "Lilly". Thank you again to all my gal pals who pooled together and sent her home to me. =)

Sunday, June 8, 2008 4:25 PM

Thank you for being so patient. As you may imagine this has been a pretty emotional week and a half. Sometimes I feel like things are 'normal' and sometimes it's all I can do to just breathe in and out. Our hearts are so broken...but, we still have to keep trudging along. Life isn't slowing down...neither can we.

Hadley is still doing fairly well. She seems pretty sluggish (for her) and tired...has had a few sporadic motor issues here and there...but other than that things are stable. Friday morning she wasn't able to climb the stairs to get on the school bus...but that evening she climbed the stairs at home just fine. Her left side is getting weaker and weaker so walking for any amount of time is getting to be quite a chore for her. Thank goodness, once again, for her stroller.

We've had a few moments that nearly broke my heart. She was looking at a Sleeping Beauty book yesterday and she brought it to me and said "Oh no...Sleeping Beauty died." I asked her if that made her sad and she shrugged her shoulders and said "No, her prince will come kiss her and she'll be alive again." *sigh*

We received a very special gift from some friends of mine. Most of them I've never even met in person. Anyway my cousin Gina made some paper clay dolls that resemble the character/characters in The Pink Sky Book ( www.PinkSkyProject.com ) and I really wanted one of them but kept talking myself out of buying her. Her name is Lilly and she reminded me a lot of Hadley. Her eyes are just slightly crooked, she's got an adorable brown bob haircut and she is wearing a messenger type bag stuffed with naked baby dolls. For some reason I just really saw Hadley in her and wanted her. This group of ladies (led by my pal Angela K.) got together and bought her for me. Not only that but they donated enough cash to really get our "Hadley's Magic Days" fund off to a great start. As soon as we get to Portland I'm going to open an account just for this purpose. We'll be socking away as much money as possible so that we can have some great adventures and really make life magical for our girl. Thank you so much, friends, for helping us get that started! It means SOOOOOO much to me. =) ANd, I'll post some pics of Lilly as soon as she gets to me. =)

I also got to go out to dinner last night with Angela K. We wanted to go out before I move away (again). We decided on The Melting Pot. I had never been...and oh my goodness, it was probably the tastiest meal I have ever eaten. SO very yummy. =) If you have one near you and haven't been I HIGHLY recommend it. It's not a real kid friendly dining experience so I'd go on an adult only night...it was just so fun and so tasty. =)

I'll try and get some pictures uploaded tonight or tomorrow. I took a few in Idaho and have a few from the past few days, I think.

Well, I'd better get back to preparing for the movers. They'll be here first thing Tuesday morning and we still have a lot to get done. Some things never change. Before I go, though, I wanted to share this with you. One of our readers left it in the guestbook and it really touched my heart. I couldn't NOT share it. I hope it speaks to you like it did to me. =)

The Brave Little Soul
by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

***
Have a good week...Make each day count.

Love,
Angela

Wednesday, June 4th 10:45 pm

I'm sorry to keep you all waiting. Thank you to everyone for your thoughts and prayers. It was a hard day.

We have officially reached the end of treatment for Hadley. We will meet with our team of doctors here in Seattle sometime in the next week...but, when weighing risk vs benefit there aren't any options left that won't ultimately just steal away quality of life. We are in agreement with our doctors that we have exhausted our options and have done our best to fight this beast.

We are...well, I don't have words to describe what we're feeling right now. I just can't even imagine our lives without Hadley here.

We have helped Hadley fight this for over 4 years and now it's time to not worry about fighting it and focus all of our energy on living...making every single moment 'count'...drinking up every ounce of this sweet girl our family is blessed with...loving on her for just as long as we can. I've always gotten through the journey by having a plan of action...a goal. This is our next step...our goal.

I know SO many people were praying for a cure for Hadley here on earth. I don't want anyone's faith to waver. We've known all along that a cure would take a miracle...and that's what we've been praying for. I still believe in miracles. I know that Hadley 'could' still get one...but, and this is a BIG but...I want you all to understand that Hadley IS a miracle. She is OUR miracle. Not because she beat odds or was a warm fuzzy success story but, because of who she is. Every day we've had with her has been a gift...it's devastating that she has to go...but, it has been, and will continue to be, such a blessing to have her in our lives. She has taught our family so much about life and love. I am so proud and thankful that she is 'ours'.

We've spoken with the kids briefly. We mainly wanted to open the lines of communication and let them know the very basics. They know that Hadley's tumors are getting bigger and there is no more medicine to help them get better. They understand that this is not a good thing and that she is not going to get better. We've explained that being sad and confused is ok...and that Mommy and Daddy are sad and confused. They didn't have any questions for us yet. But we wanted them to know that we respect them enough to be honest with them about what is happening. We'll go in to more detail with them as time goes on. Please pray for all of us...but, especially for the boys. I am so broken hearted for them. I just can't imagine trying to absorb all of this at their ages. I'm so sad for them. Hadley, as usual, is just as cheery as can be. She knows there is no more chemo and is happy about that. She says "That's not good!" when we talk to her about her tumors growing. But, overall, like most kids her age she doesn't have a grasp on the concept of death. She is not afraid and we are going to do everything in our power to keep it that way.

My cousin Stevie's mom, Gina, has written a children's book that is due back from the publisher any day now. It's called Pink Sky. You can check it out here: PinkSkyProject.com She will be sending us a copy just as soon as she gets them. I know it will be a great tool to help the kids open up and 'cope'.

Thank you so much for your love and support. It means the world to me. Really. Please feel free to call/email whatever. I know that nobody is going to know what to say. That is ok. I really don't know what to say either. Just letting us know you are there is more comfort than you'll ever know.

Hug your loved ones extra tight.

Angela

Tuesday, June 3, 2008 1pm

Hello,

We're here just plugging along. I feel like I'm just treading water. Everything is so uncertain and up in the air right now. It's a really scary feeling. I am doing better than I thought I would be with everything. I think I'm just in my 'take care of everything' stage and not in my 'dealing with it' stage. I guess that's probably normal.

Hadley is home from school today. It's been a rough day. She got up at about 5 am and got in bed with me. When we got up I realized she had a gunky nose (I'm thinking it's allergies) and was quite seizure-y. She's got big dark circles around her eyes and is in the foulest mood I've seen her in for quite some time. She has yelled at me several times today and has just been a punk. I feel bad for her. This isn't normal for her (even when she is sick). She's usually SO sweet and loving. It's been hard day for me to see her like this. She has her kind moments but, for the most part it's like some hateful child moved into Hadley's body and took over. =( She just got finished screaming at me and then just as quickly as she started raging...it was over. Then she calmly looked at me and said "I won't bit you...ok." *sigh*

She was complaining of head pain last night until Brandon gave her some Tylenol. I'm hoping that since plain old Tylenol seemed to help that the headache was just associated with the crud that she woke up with this morning and not something more...cruddy. =( I guess I'll be doing a lot of worrying. Or, I'll just learn not to. *right*

Well, she's asleep now so I'm going to get back to straightening the house etc. A rep from the moving company is coming this afternoon to do a walk through and our house looks like a crash pad. There's still a bag by the front door with bathing suits and stuff from Idaho in it. Oh well.

Thank you for checking in on our girl and for all the thoughts, prayers and kind words. They're more appreciated than you'll ever know.

Take care of yourselves...

Angela

Friday, May 30, 2008 7pm

It was a long day but, we're finally home. The MRI results were not at all what we were hoping for. Not at all.

Tumor board meets Wednesday afternoon and they'll give us a recommendation then.

Please keep praying for our sweet girl. I'll share more in a bit...


Angela



***********************************************


11pm

Hadley's original tumor area is in her right thalamus/pituitary gland, etc. The original tumor site is quite large but it was all in the right side of her brain and a lot was removed in surgeries in 2004.. 12 weeks ago we found out that she had a new tumor in her left thalamus. This was really troubling because low grade tumors don't 'jump' the mid-line of the brain. Having tumors in both the right and left thalami is called "Bi-lateral Thalamic Glioma". These usually have a fairly poor prognosis...but not the worst, by any means. There are very few proven treatments. The best is total resection (removal) which is, more times than not, impossible. We decided, with the guidance of our medical team, to wait 6 weeks do another MRI and make a plan. Amazingly, in that six weeks, the tumors grew less than 25nd by medical standards were deemed 'stable'. Once again our plan was to wait 6 weeks do another MRI and move ahead from there. Today was the third MRI. As you may have guessed Hadley's tumors are no longer stable. They have all grown...even more new tumors have shown up on the left side of her brain...and there is a very large, very troubling, area that we're holding our breath and hoping is not tumor. But, the likelihood of it being anything else is...well, non existent.

The radiologists, not knowing Hadley has never had radiation, wrote in their report that this new malignancy can be best compared to those most likely caused by radiation. Those of you out there from our Peds Brain Tumor and other Brain Tumor 'buffs' will know that this is never a good thing. This is a very very bad report to read..and a very scary MRI to see. For the first time I actually gasped and cried...and felt like I couldn't breathe...there are just no words to describe how horrible and helpless I felt. Our amazing Nurse Practitioner had already contacted radiology to have them change the wording in the report. She felt the statement was uncalled for since, so far, nobody has been able to actually prove anyone's tumors were, for certain, caused by radiation therapy. Obviously, I didn't take a lot of offense to the wording since Hadley has never had radiation (it's never been an option for her). But can you imagine if you had chosen it for your child/loved one and then they had this nasty relapse and you read that YOUR choice caused this? OUCH. Anyway...

This is all so hard to believe. She is still her same amazing little self...still smiling her perfectly crooked little smile. She has had some weird seizures, some sleep cycle issues, some hormone issues, and has gained 15lbs in 12 weeks. She is 4' 1" and 12 weeks ago she weighed 62lbs. Six weeks ago she weighed 70 lbs. Today she weighed in at 77lbs. This is, apparently, not uncommon in kids with thalamic tumors. So, in 12 weeks she's gone from a little girl's size 7 to at least a 12. Her size 10 pants won't even snap anymore. I think our next shopping trip we'll be heading back the the Hanna Anderson outlet. We have the best luck with their clothes for her.

Tumor board meets on Wednesday. We'll get a call that afternoon with the board's recommendation. We're not expecting it to be a real positive conversation. Please be praying.

I'm sure I'll be able to be more upbeat later...right now I just feel sad and shocked. I don't really have much time to wallow. Our movers come Tuesday afternoon for a pre-move walk through...and then on the 10th for the 'real deal'. Thank Goodness we're 'only' going to Portland and not across country.

Thank you for your prayers...please keep them coming.


Angela

Wednesday 11:15pm

Hello,

We're home. Sorry for the delay. This is the first opportunity I've had to sit down and even try and update. I feel like I've been going a mile a minute for weeks now. I'm glad I decided to go to California...and thankful I had the opportunity to do so...but boy am I BEAT. Do you ever wish you could slow things down a bit? That's how I feel right now. I drove through 5 states twice...in less than a week.

PMS (Pre Mri Syndrome) is in full swing. MRI is on Friday (day after tomorrow). I'm kind of just trying not to think about it. There's just too much going on right now to try and deal with any of it...so, I'm shoving things to back burners...EVERYTHING really is being shoved...except cleaning/purging/organizing that's good therapy right there. This move is such a curse and such a blessing. *LOL*

Hadley is doing well. This makes me nervous...odd, I know. But our awesome team up at Children's has pointed out on several occasions that Hadley's MRI's and such always come back 'better' when she seems to be falling apart at the seams. It's when she's doing amazingly well that the wheels all fall off and we skid out of control. I guess no matter how things are going there will always be some worry. I mean, we're not going in for a well child visit and vaccinations. *sigh* I know the road ahead of us could very well be nightmarish and horrid...but I HOPE that it is nothing short of miraculous. Either way Hadley is an amazing blessing...even when she's giving us 17 year old attitude and telling Gramma she's thirsty and wants a Cosmo. *Oy*


Brandon is scrambling because he just realized that our move was scheduled for a week from tomorrow. To say that we aren't ready for the movers is a gross understatement. Never mind the fact that Brandon's last day of work isn't until the 6th and the kid's last day of school isn't until the 13th. Oy. I'm tellin' ya. So, as things stand we'll have movers on our doorstep in one week. HOPEFULLY he can get it changed...but this is transfer season...so I'm thinking the odds aren't good. If we have to stick with the original date we'll be camping out in an empty house. *sigh* Some days. Some days...ya just gotta laugh or you'll cry.


Well, if you couldn't tell I'm feeling a little overwhelmed right now. =) I feel like everything is just total chaos. I'm not sure if having the MRI in the middle of it is good or bad...I'm too 'spinny' to really think. =)


Please be praying for the MRI on Friday. I am stressed to my limit...and so scared for my girl. Please pray...I'll update on Friday.

With Love and Hope,
Angela

Tuesday, May 20, 2008 8:20 AM

Hi everyone,

Thanks for your patience. I am still down in Sacramento. Let me tell you, it is hotter than hades here. I think it's supposed to be a bit cooler today...we'll see. =)

The kids are doing great with Gramma and Grampa Fox and all the aunts and uncles. They're having fun swimming and playing and going to bible class. Last I heard Auntie Hayley was going to be putting "the Fancy" back in Hadley's hair. =) So, when I update pictures look for some super cute pink highlights. =) Liam needs a 'clean up cut' while he grows out his mohawk...usually auntie Hayley just brings her shears etc to Gramma's to make it easier on everyone but my Liam insisted that it HAD to be done at the salon. *snort* So, they're hoping to get him in and get his hair cleaned up. Keegan is still insisting on growing his out and won't let anyone touch it. I have to admit he looks pretty stinkin' cute with long hair...but, I wonder how long into summer that'll last.

Poor Brandon is at home and really hating having us all away. I would think he'd love having some time to himself...huh?!? He's still day working at the station so he's pretty tired and ready to transfer so he can get into a duty section and get a better schedule going. Me, I'm just ready to get the move over and done with. We're not ready for the movers to show up yet...but, we're getting there. We have a lot less 'stuff' than when we moved up from California so that is great. I've spent a lot of time going through stuff and weeding out what we don't need...so hopefully that'll help.

My Papa is actually doing better...which is a releif. He's stil not doing 'well' but he's a lot better than he has been. He spent all day in dialysis and doctor's appointments yesterday and was really beat. Hopefully today I'll be able to get a good visit in.

We haven't had much of a response, yet, to our pleas for help with the boy's tuition. We are thinking about asking to be put on the 'list' of people willing to take in an exchange student to help with it...but, our big concern is the emotional rollercoaster that is our lives these days and bringing a teenager into that. I think it would be a great experience for our kids and for us...but, I would be hesitant to bring someone else's "child" into the sittuation we're in. I guess we'll see how the MRI on the 30th goes and move on from there. I don't know. I just don't know what the 'right' answer is in this sittuation. *grunt* =)

Well, I'll update again if anything changes or when I get home. Have a safe Memorial Day weekend ya'll.

With Love and HOPE,
Angela

Monday, May 12, 2008

Thursday evening****************************


The kids and I are headed out of town first thing in the morning. My Papa Bishop had a really rough week and I really need to get down to see him. He's in California so I'm going to take the kids to Brandon's parents house and leave them there and travel on. I'm sad that Papa won't get to see the kids...but, I think it's better if they're not there. They'll have a lot of fun swimming and playing at Gramma's. =) Please pray for my Papa, safe travels and a stable Hadley during her stay with Gramma. =) I suppose a few prayers for the boys general safety couldn't hurt. They are monkeys after all...you just never gonna know what's gonna happen with those two.

I'll update again when I can. Thanks in advance for the prayers.

Angela


***********************************************












I had to wait until Gramma and Grammy got their Mother's day packages to share these here...but, here they are. =) We had them taken a few weeks ago. They are just proofs obviously so they looked better cropped a bit etc. I am SO happy with how they turned out. =)

Tuesday, May 6, 2008 10:13 AM

Hadley had a quiet weekend. Thank goodness!!! She slept a lot...but that's to be expected after Friday's ordeal. We have just a little more than 3 weeks until her next MRI. Honestly, I have no idea what to expect anymore. I don't really have a gut feeling yet. I don't think I'd trust it anyway after the surprises we've gotten over the past few months.

Hadley has been talking a lot about heaven lately. We have put off having "the" talk with her because she was so young (just 3 1/2 years old) and so delayed when she was diagnosed. Now...with all that is going on...I don't know...it's just a really personal, really close to home, really 'this could happen' discussion and neither of us wants to 'go there' until we know more about what's happening with her. But, Hadley always does things in her own time and she has started telling us what she believes about heaven. She hasn't asked a single question...she's more interested in teaching us. =) I have to admit that it is a huge comfort to my mommy heart that she is not afraid to die or go to heaven. This may be partially because she doesn't fully understand...or maybe it's because she understands better than the rest of us that being in heaven with her creator...the only one who loves her more than we could even imagine...is what she was MADE for. I don't know. But she does know that it is beautiful and that Mommy and Daddy will be there with her. She is also adamant that Uncle Evan will be there. When I asked her who else would be there she told me Honey will be there. We talked some more and I reminded her that Stevie and Angel Tori and Grandma Bubbles would be there too. It broke my heart to see her so excited about it...but, like I said, it is comforting. So many kids (and adults) are so afraid of that part of their journey. Hadley is not. So, I guess for her...our 'talk' will be more encouraging HER to share than us trying to teach her and comfort her about a topic that is so abstract. She seems to have a pretty strong belief about heaven in spite of our lack of communication on the subject. So, we'll encourage her to explore and embrace that.

So, as if today's post wasn't enough of a tear jerker...a friend of mine who is a total Peds Brain Tumor Fund and Awareness Raising Soldier put together a video for Hadley. =)

I'll disable the music on the site for now so that you can hear the music in the video.

Have a great week everyone.

Angela

Friday, May 2, 2008 2:32 PM

I've been trying to update all week and just haven't been able to do it. I can't really explain. I don't know what to tell people when they ask how Hadley is anymore. I honestly just don't know how to answer that question. I know that she is not well...I know enough to know that these new tumors are trouble...big trouble. But, on the other hand, her last MRI didn't show the crazy growth that we and the doctors were expecting to see. That is good, no, great! However...she does still have new tumors popping up...and that isn't good. Nobody can tell us what may happen next. It's all a waiting game. *sigh* I am facing realities that I don't want to face and am not ready to share with the world yet. So, please be patient with me.

Hadley had been doing well up until yesterday. Her teachers told me she was very tired and fell a lot at school. Then today I had to go pick her up at 12:50 because she had what they described as a 'full' seizure. A 2 1/2 minute long twitching body crazy seizure. Afterward when they tried to communicate with her she would only say numbers. VERY odd. I hate for her to go through something like that without me...yet, at the same time...I think I would have just totally fallen apart. *sigh* Way too scary. Once they got her down to the health room she had another seizure but this one was more typical for her. It lasted about 30 seconds and was really just a staring spell and deviating eyes. When I got there she looked exhausted but was able to greet me and tell me that her head hurts. She's been resting since we got home. I have strict instructions from Seattle to take her straight to the ER at Madigan if we see anything else out of the ordinary...including more of her typical seizures...and anything else that just isn't right. They kind of wanted her seen now...but, I've dealt with them in the past and the first thing they're going to want to do is put her in a scanner. When you use different machines and have different docs reading the scans it's really hard to compare. So, unless there are drastic differences it won't be very reliable information anyway. If the seizures keep up though...and I feel like she needs to be seen...I will take her though.

Obviously I don't need to say this...but, I'm worried about my girl. My heart is hurting. Reality bites. Please pray.

Angela

Wednesday, April 23, 2008 4:02 PM

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1.

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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~






Well,

my attitude never really changed much yesterday. It was a hard day. When we started this journey what we "heard" (not necessarily what we were TOLD) was that we would do surgery and chemo and in a few years our lives would be back to normal. If only that could happen. If only this could become a memory instead of a daily battle. *sigh* It's so disappointing to me that we are where we are after 4 long years. I'd bet if I dug up the journal entries from 4/22 of the last 3 years they'd all read a bit the same. But, it is what it is. We can't change that...we can just do our best with it. So, yesterday was my day to feel glum and defeated; today we move forward. =)

From a cheerier perspective I am amazed at how much the kids have all grown since this journey started. Liam was an infant, Keegan was 2 and Hadley was 3 1/2. They have all changed so much. They are amazing little people. I can't imagine my life without them. They truly are how I get through the heartbreak this cancer beast brings into our lives. They drive me crazy sometimes...they are by no means perfect...but they really do keep me going...and make me want to be a better person.

Brandon and I got married so young that I feel like we have really grown up together. That is no easy task in the best circumstances. When Hadley was diagnosed we'd only been married for barely 4 years. I had just turned 26, he was about to turn 25. Most of our friends weren't even married yet. This was a LOT for any marriage to handle...it still is. But, Brandon really has become my best friend. He, like the kids, certainly knows how to drive me crazy...our marriage isn't prefect. But we are truly in love and lean on each other throughout all of our trials. We have really learned a lot about working as a team and the different strengths we each bring to the table. I am proud.

We may not be beating this tumor...but, in a way, you could also say it's not beating us either. Thank you for praying for our girl and our family for the past 4 years. I have no doubt we'd be in quite a mess without them.

With Love and HOPE,
Angela

Monday, April 22, 2008 11am

4 years ago today our lives forever changed. I'm in a bit of a mood and I don't really have much to say about it. Maybe later today I'll have some inspirational things to say. Right now, I'm feeling defeated and pessimistic. I'll update when my attitude changes. =)





We had a great weekend! Hadley was very worn out on Sunday but that's ok. So was I. She and I snuggled into my bed and took a long nap together. I love napping with her. She's always loved sleeping with her Mama...her body is always so warm...and she just totally melts into you. When she was a baby she wouldn't sleep unless someone was holding her. She was that way from the first moment. We had such a hard time getting her to sleep in her own bed...it was such a struggle. Now, sometimes I lay in bed at night, awake, just wanting to go in and snuggle in with her. She's a great napping pal. =)

Anyway, no new news to report really. The MRI is scheduled for May 30th.

I have a few things I want to post but I need some pictures that are being held hostage in my Mac. I'll try and get it done this week. =)

We received a surprise blessing in the mail today. There was a check with a notation that read "for Hadley" from Fortuna Nazarene Church. Thank you! What a selfless thing for a group of people we've never met to do for us. =) Thank you! Thank you Thank you!!! =)

I thought I had waited long enough to share that Brandon was leaving for a month with the ship. Apparently not. We're still not sure what's going on. Brandon had been being told he was leaving and flying home at some point...and now is being told he is likely not going but, has no official orders. So, in the true spirit of the US Coast Guard-Semper Paratus-he/we will be ready either way when the ship leaves the pier. He is taking his sea bag and saying good byes but may very well not be going anywhere. You just have to laugh. It's funny. It is. So we'll see what happens. We're ok either way. If the ship needs him then he has a duty to fulfill. If not, then he'll be working on land until our transfer. Just thought I'd let you all know.

Gotta go get kiddos in bed. Have a great week all. Please continue praying for all our brain tumor friends...especially those facing bigger trials than usual. Please pray for Gina, Steve, Aly and Noah who have been missing Stevie for a year now.

With Love and HOPE,
Angela

Saturday, April 19, 2008 2pm

Thursday was my 30th birthday. Brandon made me a cake. Hadley LOVES cake, especially when there's chocolate involved. =) I have a short little video of her as Brandon was cutting and serving the cake. This kiddo has more enthusiasm than almost everyone else I know combined. I love this girl so much. =)




and a link in case you can't figure out how to pause the music:

http://smg.photobucket.com/albums/v289/mamafox/fox%20photos/?action=view¤t=MOV00061.flv


We're having a birthday party tonight and I still have a few things to do to get ready. I'll update on Sunday or Monday. =)

Have a great weekend.

Angela

Monday, April 14, 2008 9:30pm

Hello All,

Well, we had a productive and fun weekend. I'm pretty sure we found a house in Portland. *phew* There's still a few little kinks that are working themselves out. But, we are very relieved to, hopefully, have that big piece of our move figured out. Keep praying that everything works out in the best way possible for everyone. =)

I haven't really said much about this here, or at all, because we're never really sure about what will happen with the Coast Guard. The schedules etc are never concrete. =) But, Brandon is being deployed next week. He should be gone for less than a month so it will be relatively short in the grand scheme of things. This will be his last patrol with the Mellon....for now anyway. =) I can't believe it's been 2 years. There were some pretty trying times...but, we did it! =)

Hadley is doing well. She had a great weekend! We spent it in Portland and got to spend time with friends and family. The weather was gorgeous!!! I did notice a lot of seizures on Saturday in the heat. But, other than that she did awesome. =)

All of the kids were sad to come back to Washington...they are all very excited to move back to Portland. What a huge relief. I always worry that our current move is going to be the one that they finally just all 'freak out' and say NO MORE. *ha ha*

Well, I'd better run. The kids are all in bed asleep. I should be taking advantage and getting something done.

Please continue to pray for all of our brain tumor friends. There are so many really struggling right now. =( And also for my cousin Stevie's family. 4-19th marks one year since she left this world for one free of brain tumors and limitations. It hurts my heart that she is no longer here...but, I can't imagine the heartbreak that her parents and siblings face every day. Please keep them in your prayers this week. We love you Steve, Gina, Aly and Noah.

Monday, April 7, 2008 3:05 PM

Friday, April 4, 2008 2:46 PM

We have GREAT news. Probably the best news we could have hoped for!!!

All of the tumors are STABLE. We're still waiting for the final report but, everything looked the same as it was 6 weeks ago. =)

We are SO relieved and thankful. Our next step is another MRI the last week of May.

I'll update with more a little later. =)

Thank you for all the love and prayers.


***********************************************************

Ok, so, I'm back. I took a long nap this afternoon. Apparently I was exhausted. =) Ha ha.

Brandon and I are both processing this stable news a little differently. As usual. Brandon is more of a focus on the battle person and I am more of a focus on the war person. We both have the usual issues with worrying about Hadley and all the 'what ifs' but, I give those thoughts and worries a lot more power. It's something I am trying to work on. If I'm going to truly claim this 'win' I'm going to have to let go of the..."how long is this going to last..." and "we're in a lot of trouble when these tumors start growing again" thoughts and worries. I've got the motions down pat...it's gaining control of the thoughts that I struggle with. Maybe I can find a book or something. =)

So, the problem we've been seeing with Hadley's eyes is a cranial nerve palsy. Her 6th cranial nerve is damaged/has pressure on it etc. Basically the only way to fix that is to not have tumor there...sometimes it repairs sometimes not. Removing the tumor isn't an option right now so we just watch it and we have strict instructions to never go more than 6 months without an ophthalmology appointment.

I have to call our neurologist on Monday and figure out our game plan. The seizures have slowed down a bit...but, we still don't have control. Hopefully we can change that and keep side effects to a minimum.

I have some pictures and video from today. I'll try and upload them soon.

Gramma and Grampa Fox fly in tomorrow morning so I'm sure we'll be busy having lots of fun. =) Have a great weekend, friends. =)

With Love and HOPE,
Angela

Wednesday, April 2, 2008 2:34 PM

Hadley Video:









If you look closely at this picture you can see that Hadley's eyes aren't aligned properly. They aren't like this all the time...but, we're seeing it more and more. We're still not sure if this is something that is seizure related or if it's muscular. I've been trying to get a picture of it because it's hard for doctors to help us unless they see it. "Thankfully" I also caught it on video tonight too so they can see it in 'action'. Anyway, I was talking to Hadley and she was expressing herself so well and being so cute...I had to capture it on video. As soon as I get it uploaded to photobucket I'll post it. =) Good times. =)




Hello friends,

I've had a tough week adjusting back to 'life in the trenches'. I had a bit of a melt down yesterday...got out some bottled up 'aaaaaaaaaaaaaaarrrrrrrrrrrggggggggghhhhhhh'. It wasn't so fun...but I feel better now. I've remembered how strong I am. Back to business. =)


Hadley has been having sort of a mixed bag of days. On one hand we've seen her seizures slow down QUITE a bit. On the other...she is sleeping a lot, we've seen lots of tears, and lots of clumsiness. So far today she's only been awake for 4 hours of the day. It's gorgeous outside FINALLY and she is just too beat to play outside. The boys are outside running around, catching bugs, playing on their swingset and picking dandelions for me while Hadley is asleep in Honey's chair in the front room. My heart hurts for her.


Please start praying about the MRI. This is a really scary time and we need all the love and support we can muster. I'm putting an old poem back up on Hadley's page. It just expresses my feelings so much better than I could.

I'll update as soon as I can on Friday.

With Love and HOPE,
Angela


Don’t tell me…

Don’t tell me that you understand,
Don’t tell me that you know.
Don’t tell me that I will survive,
How I will surely grow.

Don’t stand in pious judgment
Of the bonds I must untie.
Don’t tell me how to suffer,
Don’t tell me how to cry.

Don’t tell me this is just a test,
That I am only blessed,
That I am chosen for this task
Apart from all the rest.

My life is filled with selfishness,
My pain is all I see,
But I need you, I need your love,
Unconditionally.

Don’t come at me with answers
That can only come from me.
Don’t tell me how my grief will pass,
That I will soon be free.

Accept me in my ups and downs,
I need someone to share.
Just hold my hand and let me cry,
And say, “My Friend, I care”.

Author Unknown

Saturday, March 29, 2008 10:39 pm

I know I've been updating a lot. But I just wanted to share with you all that Hadley had a fairly good day today. She woke up around 10am...and only took a 1 hour nap this afternoon. It is very obvious when she is tired/not feeling very well. We heard a lot of "Get AWAY from ME" and "Don't TOUCH me" this afternoon before her nap. I suppose if I really think about it though...that is good. A few years ago she didn't have those basic language skills and would have just hurled something at whoever was bothering her. Ha ha. She was a bit unsteady on her feet and fell several times today. She rarely cries when hurt/has an amazing pain threshold and one of the times she fell today she actually cried. It seemed like it may have been frustration as much as an owie. She really looked like she was drunk today. Really swaying and stuff. It's so odd. Her left eye still isn't wanting to close all the way on it's own...but that just comes with the territory.

Despite what it sounds like she was actually in fairly good spirits today. =) She made some chocolate chip cookies in her "happy kitchen" (easy bake oven) and colored and cut at "the work table" and was VERY excited to go to McDonald's for dinner. The girl LOVES McDonald's. *sigh*

She's been watching a lot of Disney channel lately and they've started playing commercials for Libby Lu. I'd never heard of it so I had to go to their website. Hadley is BEGGING to go and we have two in the Seattle area...so I'm thinking we may just have to go. I'm not sure when exactly we'll go...but I'll be sure to share pics etc when we do. =) It looks like a lot of fun...uhhh...in a really sissy/girly sort of way. =) *ha ha*

Alright. I'll sign off for now.

Angela


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Friday, March 28, 2008 9:45pm

I'm placing another Mary Kay order and am offering these fun perks to help you justify a purchase

* 20 percent discount when you order by Monday 3/31

*Free Mary Kay Lip clutch OR travel microdermabrasion set when you spend $40 or more.

*FREE priority shipping.

Check out my website...there are all kinds of great new products. Mary Kay has expanded their mineral line to blush, eye shadow, bronzing and highlighting powders...and my personal fave PRESSED mineral powder packaged for our NEW magnetic compacts. =) This is a GREAT product for those of us who love mineral make ups and have missed on-the-go convenience.

Anyway, check out the site. MaryKay.com/AngelaFox




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Hello,

First, thank you for all the love and support in the guest book, emails, phone calls etc. I know that what I wrote was not easy to read. It couldn't have been...and then what do you say? How do you try and help support a family in such a scary place? I'll let you know if I figure it out entirely. I will say that your kind words and promise of prayers is a huge comfort. Thank you.

At this time next week we'll have a much better idea of how aggressive these tumors are. We, likely, won't know what our plan is yet...so there will be more waiting. Tumor board meets on Wednesdays so, at the very least, we'll be waiting for that. But at least we'll get a few answers.

Hadley had an 'ok' day. She woke up around 9:30am. She ate breakfast, got herself dressed, watched a few shows, played with her brothers for a little while, took a short nap (about an hour) and then we did some school work. We worked on addition with her number line and some workbook pages. She was really tired but ate lunch and then laid back down and watched a cartoon and fell asleep. She slept from 3pm-7:45pm then ate some scrambled eggs for dinner, took her medicine and went to bed. She fell asleep right away despite her brothers making a ridiculous amount of noise. So, altogether she was awake for just over 5 hours today. She spent the whole day walking around holding walls/counters etc for balance and fell a lot. After she fell asleep this afternoon (we were curled up in the LoveSac) I noticed that her left eye wasn't closed all the way. I closed it and it stayed closed. The same thing happened when she went to bed tonight. This is a first. She is still declining. I won't claim to know why...but I have a good idea. I suppose there are a lot of possible reasons though.

I wish I could be more positive or optimistic...I don't think of myself as being pessimistic. I'm more of a realist...which can be easily perceived as pessimistic in a situation like this. Why am I explaining myself? I know I have no reason to defend myself. I guess I just want everyone to know that I am ok. I know that I say that a lot when I don't mean it. Yes, I am scared and anxious and stressed...but I am ok. We're going through each day just trying to keep things as normal as possible. The kids are on spring break now so I'm hoping to do a few things this week. I'm so thankful we have Hadley's special needs Maclaren Stroller.

We've started using Hadley's stroller when we're out and about again. I can't even tell you how wonderful that thing is. Central Church of Christ (in Portland) bought it for us three years ago. We were having a really hard time financially and it was around $600-700 for the stroller/foot plate/umbrella. We tried to get our insurance to pay for it...but they refused. We needed something and that was our cheapest option but we just couldn't afford it at the time. It has truly been such a wonderful gift. At the hospital the other day there was NO parking (and we even have a handicap placard) we had to park out on the road and hike down the street and then through the entire parking lot in pouring down rain. I got the stroller out of my trunk and was so relieved I didn't have to try and carry Hadley's 70 lb self through the parking lot. =) I thought about all the kind people that donated money to make our lives easier 3 1/2 years ago. I hope they all know how grateful we STILL are. Anyway...it's amazing, those who helped us get it for Hadley are amazing. Thank you again!

Alright, I'd better run. Have a good weekend everyone!

Angela

Wednesday, March 26, 2008

I updated yesterday...so, if you 'missed' it check out the journal history.


Today was a hard day for me. Hadley is not looking good and I think the reality of what is happening to her is starting to sink in. Yesterday we were at the hospital on the Army base for her ear/sinus infection and the triage nurse, med student and physician's assistant all commented on the seizure activity they saw and how drastic her facial droop is. The triage nurse asked me if she had more than one tumor and when I answered I almost gasped as I heard myself answering "yes, there are 5". I really didn't realize I was in denial, until now.

At her last MRI we were totally shocked by the relapse and even more dumbfounded by the tumor in her left thalamus and (although less worried about) the tumor in the back of her brain on the right side. She was doing so well. It was hard to believe what we were seeing on the scan. I didn't even realize, at first, how serious it was because she was sitting there with us...doing so well. She continued to do well for 2 weeks after the scan. The last 2 1/2 weeks though we have seen a rapid decline. Her seizures are almost constant. Her left sided droop/weakness is worse than I ever remember it being. She is tired and clumsy and grumpy (I can't blame her, poor kid). It is breaking my heart.

I have friends and family ask how Hadley is doing all the time. I have this habit of going in to 'auto-pilot' and saying "fine, she's doing good". I guess I just feel like the time has come to honestly say how she is/I think she is doing. I am honest to goodness scared of what we are going to hear in 9 days. I know that things can turn around. I truly believe in miracles. I will always believe in the power of HOPE and Prayer. But, I fear that we are in a much worse place than I originally let myself believe. For the first time in quite a while I am very fearful that this is the beginning of the end of Hadley's journey here on earth.

I hesitated to share these feelings with you all because so many of you are family and close friends. I don't want to burden you with heartache and worry unnecessarily. I worked so hard to stay strong after her MRI. I did allow myself to fall apart for a bit...and then resolved to 'buck up'. It's just how I get through. But after pondering for a bit (and some advice from a friend I respect very much) I decided that we all deserve to have this 'out in the open'.

I am by no means giving up. But I do know that, at best, our options are extremely limited and come at a very high price to Hadley. A price we may not be willing to 'make' her pay. You have all been here with us through the ups and downs for the past 4 years. Why wouldn't I "allow" you into this heartache as well?

Now, of course, I hope and pray with every fiber of my being that my mommy gut is wrong...that this is all fear talking. I pray that when we go in for the MRI and results on April 4th we hear that all the tumors are stable. Well, to be totally honest...I secretly pray for a miracle of completely disappearing tumors each and every time we scan. Just gone...no explanation...just GONE. This coming scan will be no different.

Well, I'd better run. The boys are in the back yard playing in the snow. Yes, I said snow! Yes it is March. Yes Spring Break starts Friday. Oy Vey. I'll post pics in a bit. =)

With Love and Hope,
Angela and Brandon

Tuesday, March 25, 2008 2:59 PM

Hello all,

The gunk that we've all been battling is really becoming obnoxious. Hadley is now on 10 days of Ammoxicillin for an ear and sinus infection. Brandon is on 10 days of Pennicilin for strep throat. Oy. We haven't all been totally 'well' at the same time for...well, forever.

Please say prayers for my favorite daughter and husband (ha ha). I'm off to do some tidying and Lysosl'ing. *grunt* I have a call into the hospital to let them know Hadley is sick and on antibiotics...I'm assuming we'll be able to keep the MRI the same since she'll be just finishing antibiotics...but say a prayer they don't want to delay just in case. =) I don't think my nerves could handle it. =/

With Love and HOPE,
Angela



PS. Papa Mike is doing great. Further testing revealed that the heart attack did a minimal amount of damage to his heart. He is going home tomorrow! =)
Yay! =)



I just got back from Keegan's Parent/Teacher Conference. He is ROCKING kindergarten. =) His teacher had all fantastic things to say about him. She is amazed that he knows things that they haven't even presented in class yet (such as letter combinations and short vowel sounds). When I told her that he is reading books independently and even reading 3 syllable words on his own she was impressed but in no way surprised. Again, I am truly amazed by and feel so blessed to get to watch him grow and learn in such a 'typical' fashion (in contrast to Hadley's educational challenges). Keegan, we're SO proud of you. =)

Saturday, March 22, 2008 3:48 PM

I added a new song. Hadley loves the show iCarly. She also LOVES rocking out to the theme song. She was singing it today when I realized the lyrics are pretty great. =) So, Hadley is thrilled to have it on her page and I think the lyrics are great. Yay. Enjoy! =)

Here are the lyrics:

I know, you see
Somehow the world will change for me
And be so wonderful

Live life, breathe air
I know somehow we're gonna get there
And feel so wonderful

I will make you change your *mind*
These things happen all the time
And it's all real
I'm telling you just how I feel

So wake up the members of my nation
It's your time to be
There's no chance unless you take one
Everytime
Just see the brighter side of every situation
Somethings are meant to be
So give it your best and leave the rest to me

I Know
This time
To raise the hand that draws the line
And be so wonderful
Gold and sunshine
I know somehow it's going to be mine
And feel so wonderful

Show me what you can become
There's a dream in everyone
And it's all real
I'm telling you just how I feel

So wake up the members of my nation
It's your time to be
There's no chance unless you take one
Everytime
Just see the brighter side of every situation
Somethings are meant to be
So give it your best and leave the rest to me

Leave it all to me
Leave it all to me
So make it mine and see it through
You know you won't be free until you

Wake up the members of my nation
It's your time to be
There's no chance unless you take one
Everytime
Just see the brighter side of every situation
Somethings are meant to be
So give it your best and leave the rest to me

Leave it all to me
(Leave it all to me)
Leave it all to me
Just leave it all to me




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Papa Mike is doing just about as well as can be expected. =) He had surgery to reattach a finger and stitch up another. He's doing well...but is being cared for and observed in the Cardiac ICU. Please continue those prayers. =)



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***Please pray for my Papa Mike. He is currently in a Cardiac Cath Lab following an accident and a heart attack. Also pray for my Gramma and our entire family. Please pray that things go as well as possible for him from here on out.***

***Papa is out of the cath lab. He had a clot that created a total blockage. He has a stint in now...and is on blood thinners. They are waiting on a surgeon to look at his hand. But, he probably won't be having surgery quite yet because of the blood thinners. Keep praying please!!!***



Hadley's neurology appointment went 'well'. She had at least 4 seizures during our short appointment. In an odd way that was good so our doctor could see what's been happening with her. He was quite concerned with how quickly her left sided weakness and facial droop has gone downhill. I've committed myself to not working myself into a total tizzy over it. It very well could be a direct result of how weak she is from the frequent seizures...of course then you have to worry about why the seizures are increasing...but, I'm not working myself up about it. Right? Just under 2 weeks to her next MRI. I have to stay sane. =)

So, our seizure plan is to slightly increase her Trileptal (we started the increased dose Fri night). Our original plan was to start another drug. But, that was before the tumor started growing and spreading. He wants to have a better idea what our tumor treatment plan looks like before starting another drug. If we do go a chemo route we have to be a little more careful about which drugs we use. Especially on trials. We had a problem with this when tryin to get on the Lenalidomide trial. Anyway, I have no problem with this and am grateful we have a neurologist willing to take a total team approach. How refreshing. =) We are supposed to stop into the clinic when we're at the hospital for her MRI in two weeks and decide if it's time to add another drug and if so, what.

We had Hadley's Parent/Teacher Conference this week as well. Academically she's been doing well. She's grown a lot this year. The most exciting (and surprising) has been in reading comprehension. The class reads a book at group and then they take a computerized test with the assistance of an aide. The aide reads the questions and answers and the students choose the correct answer. She started the year answering 1 or 2 questions correctly and is now averaging about 80 percent correct. That alone is miraculous to me. She has always had HUGE struggles with receptive language. I'm so proud of her and very thankful for all the teachers and aides that have ever worked with her to get her to this point. Miss Gina, Miss Christina, Teacher Mel, Mrs Rambow and all of our AMAZING aides and therapists have worked so hard with Hadley and we are forever grateful. You have given us a priceless gift...communication with our sweet girl. THANK YOU! That will never be enough...=)

Hadley is having the same challenges at school we've seen at home. Lots of seizures, being disoriented and frustrated afterward and being tired and argumentative. But, other than this her teacher and aides sang her praises...and really seemed to enjoy their time with her. She is such a sweet girl. =)

The boys are doing well. Keegan read the word "Therapy" on a toy bin yesterday all on his own. I was cooking dinner and he was cleaning toys up and was trying to read an old label on a toy bin. When he said "Hadley's Therapy Tip (type) Toys" I almost fell on my face. I couldn't believe it. He is all about reading EVERYTHING now. =) Liam finally got a haircut today. He was in dire need of one and has total "issues" with getting them. Daddy finally talked him into by promising a mohawk. Or in Liam-ease "rock-n-roll guy hair". This is me rolling my eyes. So, Hadley has pink highlights, Liam has a mohawk and Keegan is trying to grow his hair out again. Why do I feel like this is the beginning of the end? *LOL*

Well, I'd better run. We have Easter Eggs to decorate...or EasterN Eggs as Keegan would say. For some reason he thinks Easter is Eastern and we can't convince him otherwise. He's the smartest kid ever you know. *LOL*

Have a happy Easter...please keep Papa in your prayers.

Angela

Monday, March 17, 2008 `11:04 PM

Today is also our 8th Wedding Anniversary. I wish I had some of our wedding pictures scanned into the computer. We were such kids. =) We have been through some really hard times...and have had moments we thought we may not make it through. But, we have grown so much...both as individuals and as a couple. Brandon, I love you so much. I am so blessed to have a husband as dedicated to our family and our love as I am. You are my rock. I would have never gotten through these past few years without you. I love you!!!


Hadley is doing well. She seems to kind of be in 'limbo'. She really, really, wants to go about her normal routine...but she's so tired and is having so many seizures it just isn't happening. She'll have bursts of energy...or times she just refuses to be 'kept down'...but overall she's exhausted. Her coloring is awful...she looks like she's on chemo again.

She has an appointment with Neurology on Friday. Hopefully we can get her some help. =(

Speaking of appointments, her opthalmology appt went well. =) No changes in her vision or VEP. =) With all the tumor growth we were expecting at least a small decline. But, no. Her vision is stable...as is her brain's response etc. =) Yay!!! In fact our ophthalmologist thought the vision in her left eye had improved just a little bit. Amazing.

We went to Anastaysja's 1st birthday on Friday evening. It's hard to believe she's already one. I'll post some pictures later. =) The kids really enjoyed getting to love on their baby cousin. =)

Well, I'd better run. I have a lot to do to get this house 'market ready' and organized to move. *oy*

Have a great week.

With Love and HOPE,
Angela

Friday, March 14, 2008 8:51 AM

Hello,

Thank you for your patience. CaringBridge answered my email and, hopefully, solved our spam problem very quickly. You will notice when you sign the guestbook now before you finalize your entry you will have to fill in a 'captcha' field. This is to keep computer generated spamming. Hopefully it works.

You want to know something really funny? After Brandon got home last night I showed him all the horrible entries and we decided to follow one of the links to try and plead with whatever site appeared to be spamming us. You want to know where all the links went? Some academy/association of seismologists. We found that quite humorous and fairly odd. I'm wondering if that site got hacked etc. The world may never know.

Hadley and Brandon are on their way to her opthalmology appts. I stayed home to finish trying to get the house in order and laundry finished. With her being home from school all week and my inability to get a full night's sleep I got NOTHING done this week...and we have a busy weekend ahead of us. =) So, I need to get things clean and on order before the fun begins. =)

I'll try and update on Monday with pictures. We should have results from today's appt early next week...I'll update when I get that. Her next appt is Neurology next Friday.

Please keep praying!

With Love and HOPE,
Angela

Friday, March 7, 2008 10:15 am

Tuesday evening: Please pray for our sweet bug. She's been seizing a LOT over the last several days. This is really wearing her out. She's missed school the last two days because of it. I feel so sad for her.

We have an appt with Opthalmology on Friday and another one with Neurology on the 21st.

Please pray for our girl. It's so sad to see her like this. This also doesn't make waiting another 3 weeks for that MRI very easy.

Thanks Ya'll!




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OUR ORDERS FINALLY CAME...and we're headed to:

















USCG Small Boat Station Portland, Oregon. =)

We'll be moving mid to late June. We are SO excited. Brandon will be at the Coast Guard's small boat station downtown working something similar to a 2 on/2 off schedule. YAY. I am SO thankful that 4 month deployments are over (for now). =) It's a 4 year billet so hopefully we'll be able to stay put for a while. Yeah!!!

Thursday, March 6, 2008 12:18 AM

Hello all,

Yes, it's midnight and I'm still wide awake. No worries, I just had a little too much iced tea a little too late in the evening. =)

I heard a version of this song tonight and thought it was probably the most fitting song I can think of right now. Hadley always has a smile on her sweet little face. A perfectly crooked little smile. She is known for spreading cheer and laughter...so much so that if she's not smiling and laughing people start to question her well being. She knows everyone's name and greets people with genuine enthusiasm. Even the nurses at the hospital look forward to her visits because they just love that she is never upset to be there...she comes and goes with a big smile on her face and is always delighted to see them. Despite her 'teenage' attitude that peeps out from time to time she is such a JOY.

This is probably one of my very favorite pictures of her smile. It is so genuine, pure, deep...amazing...jut like her.

Monday, March 3, 2008 7:30 pm

~Tuesday Evening~

The kids started TaeKwonDo last Monday. Because of colds and the craziness last week today was their second class. They all LOVE it. =) I just had to share the pictures. =)


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Sorry this is so late in the evening. It's been a long day. Unfortunately, today didn't bring much more hopeful news. Our sweeter than candy Nurse Practitioner is trying to stay very positive until we know exactly what is going on. Hadley's tumor has been "reclassified" as a "Bilateral Thalamic Glioma". Don't go and google it. I'll just tell you from personal experience that the small amount of research you find is not uplifting. In light of information found in that research (mainly that chemo and radiation haven't proven to be beneficial in studied cases) we are going to agree with our doctors and wait 6 weeks and do another MRI and go from there. We feel that it is the best option for Hadley right now. Surgery is really our only other option...and, at this point, we're not willing to take the risks involved.

We would sure appreciate your love and prayers over the next several weeks/months. Please pray that we are able to "watch and LIVE" rather than "watch and WAIT". Please pray that these tumors STOP growing (yesterday would be nice) and that Hadley remains relatively symptom free...and HAPPY! =) Please be patient with me as I 're-learn' that there is HOPE in the unknown.

Please also keep praying for our friend Morgan who has been in the hospital for almost a month now. www.caringbridge.org/ca/morganfaith

With Love and HOPE,
Angela

Wednesday, February 27, 2008 1:45pm

Here are a few pictures from Wednesday. The bottom two are Hadley waiting for her MRI...the top is a fairly grumpy post anesthesia Hadley. =)

Saturday, February 23, 2008 9:15am

Hello all,

This MRI has really snuck up on us. Between Brandon's crazy work schedule and worrying for Morgan I haven't really had much time to stress. That's good, very good. Unfortunately Brandon has duty all weekend and is stuck on the ship till Monday morning...and THIS is when the reality of the MRI is sinking in. Ugh. But, several weeks back I organized a get together for local Coastie wives I haven't met yet. So, in a few hours the kids and I are heading over to Ft. Lewis to go bowling with some Coastie families. When we scheduled this Had's MRI hadn't been scheduled yet...and I had no idea Brandon would have duty all weekend. I think maybe someone upstairs has an eye on keeping my sanity in tact. =) This will be a wonderful 'distraction'.

After doing some shopping for Had I realized she's not in a size 8...she's in a 10!!! When did my kid's grow up? I could have sworn they were all just babies...=)

Well, I'd better run. Please keep praying for Morgan! www.caringbridge.org/ca/morganfaith

I'll update after the MRI on Wednesday...

Angela

Tuesday, February 12, 2008 4:15pm

Hello,

Sorry for the lag in updates. It's been a bit crazy around here. =) Brandon did make it home. The ship came in Wednesday afternoon. There are no photos. The weather was horrid and we were all soaking wet and freezing our booties off. But that's ok because 'daddy' is home safe and sound. =) He's been really busy at work since the ship returned so we haven't seen a lot of him...but, next week should be better. I hope.

Morgan is finally doing better today. She's had a really rough week recovering from open heart surgery. www.caringbridge.org/ca/morganfaith I am SO relieved to hear that she actually had a little smile on her face today. *phew*

We made a quick trip to Portland this weekend for Auntie Manda's birthday. We had fun. =)

Hadley's been doing well. We're still dealing with some small seizure issues. but overall she's doing much better than she had been. =) I'm sure that at some point between now and the MRI her body will do something crazy and totally freak me out for the MRI. That's just what seems to happen. Ha ha.

The kids are growing up so fast. Hadley and Keegan have both moved up a size. Hadley is in an 8 now and Keegan a 7. Keegan is long and thin. I had to buy him 7 slims and he still needs the adjustable waist jeans because he's so darned skinny and tall. Hadley has a much more 'solid' build and the 8's fit her well around the waist and even with her long legs her pants are a little long. Liam is fitting in a 5 now. All his size 4 pants are too short for him now...same with long sleeved shirts. Thankfully in his case a lot of Keegan's clothes can be handed down. =)

Keegan is a full on reader now. He has a little bit of a hard time with a few letter combinations like "gh" in light etc. But for the most part he'll read just about anything you put in front of him. He's really driven himself on this and is almost as proud of himself as we are of him. =)

Hadley is doing ok in school. She seems to be having some stamina issues. We see a lot of reports of behavioral issues in the afternoons. I get her to bed early and let her sleep until she wakes up on her own. This means that sometimes she is a little late for school...or that I have to drive her because she misses the bus, but still gets there on time. Other than that I don't really know what to do. She loves being there and wants to learn. She perceives taking a 'break' as punishment and doesn't want to do that...which causes more behavior issues. Overall, though, she seems to be doing well. Her writing is coming along, she's coloring inside lines now, knows her whole alphabet and most of their sounds. She can finally relay parts of her day when asked. She likes the activities and can tell us bits and peices of them...but, doesn't really seem to grasp the lesson involved. Last night she told us that they squirted ice cubes with water...and that was it. She couldn't tell us what happened, why they did it, etc. We have a long way to go with information processing and figuring out how her brain works and how we can get stuff through. Sometimes I really just wish I had the power to read her mind. I do still believe that communication issues are holding her back a bit. If I could read her mind I may be able to help her. Certainly one super power isn't too much to ask, right?!? We will continue to plug along...we're certainly not giving up that's for darned sure. =) I still have hope that at some point we will have a huge 'a-ha' moment with her and from then on we'll know exactly how to present information in a way that she can better process it. My hope is that by the end of the year she'll have mastered the preschool curriculum and some of the Kindergarten material. We're a long way from memorizing all the sight words...but, maybe we can start working on those soon. Little by little we'll get her where she needs to be.

Liam is still enjoying hanging at home with mom...but is looking forward to "being grown up and going to Mrs Woods' class". I don't have the heart to tell him that we don't know for sure that we're going to be living in Portland next year (we're STILL waiting on 'orders' from the Coast Guard). He's a smart little guy and I think the transition into school will be an easy one. He's a little rowdy and is definitely going to be a class clown once he feels comfortable there. I've already started praying for Dottie. Ha ha.

I'm still working on getting Christmas Thank You's out. So if you're expecting one...they're in the works. I know I'm horribly tardy and have no excuse. Just know that they are coming...and that I've had the best intentions. ha ha.


Thanks to all of you who continue to check in on our super girl. I know I haven't been updating very frequently. Honestly, things have been more 'normal' than they have been for a long time...and during these times I really just don't want to even think about brain tumors or anything related. It sounds silly because not a day goes by that I can actually accomplish this. Hadley's life has been so affected...even her most basic every day activities seem to have a 'stamp' on them. I don't want to sound negative when things really are going so well. So, most of the time I just try not to think about or process my feelings on the matter. I refuse to accept her current level of function as her new 'normal'. I know there is more for Hadley...so until then I will hurt for what she has lost and rejoice for what she regains. But, I refuse to accept what "is" now as permanent. I hope that makes sense. ?!?


Please be prayerful for Hadley's upcoming MRI. Just two weeks from tomorrow. *sigh* I'm forcing myself to think positive. I'll let you know how that works out for me. Ha ha.

Hope you all have a happy Valentine's Day. Valentine's Day is also Congenital Heart Defect Awareness Day...or CHD Awareness Day. Coincidentally, our favorite little CHD survivor is in the hospital recovering from open heart surgery. Please keep praying for she and her family. Her mommy and daddy are there in Calif. with her. Big brother and little sister are here in Washington with their grandma. Daddy is due to deploy very soon. Morgan needs your prayers for healing...the rest of the family needs prayers for peace and strength. www.caringbridge.org/ca/morganfaith

With Love and HOPE,

Angela

Sunday, February 3rd 10:45pm

***Our new MRI countdown ticker has replaced the Christmas ticker above. Please start praying now.***




Hello all,

Before I start our 'update' I'd like to ask you all to please keep praying for our little friend Morgan. She is flying to California with her parents tomorrow for open heart surgery on Wednesday. I could never do Morgan's story justice so, if you'd like to know more please vist her site at: www.caringbridge.org/ca/morganfaith. And, as long as you're there stop by her guest book and leave her a note of encouragement.

I've managed to keep from 'sharing' how deeply this is affecting me so far. I just feel like it's not fair for me to even spend a moment on my thoughts and how this affects me when my dearest friend is living it. But my heart is SO heavy with worry right now. I anticipate amazing things...but there are always the 'what if's'. We have known the Keane's since Morgan and Liam were 1 yr and 6 mos old respectively. Angela and I have laughed, cried, yelled, rejoiced and damned through SO much together. Our daughter's stories are so very different...but a lot of our feelings are very much the same. Watching my friend struggle and hurt for her baby girl is SO very hard...probably more so because I do know the heart break involved. PLEASE keep this entire family in your prayers. Dan, Angela, Braeden, Morgan and Danica are ALL in need of our love, support and prayers right now.

Thank You!!!







Now, the kids are doing well. We had a few snow days this week. Hadley does not do well with snow days. She gets very upset that she doesn't get to go to school on a day that she's supposed to. I suppose this is a good thing though. At least she likes school. =)

Liam is sick. It's a weird bug though. He's been running a low grade fever during the day and just feeling tired and clingy. At night his fever spikes and he runs a true fever. He has no snot, no vomit, no other signs of infection etc. I'm really hoping this isn't the beginning of something really nasty! Poor buddy. =(

Brandon comes home this week. I can't say when, obviously, but he will be home when I update again. =) We are SO excited. =) I'm running around the house trying to catch up on all the things I've been procrastinating on for the last two months. *ha ha*

Our family quote of the week is "If you don't give me chocolate you'll go to jail!" Hadley, speaking to Mom at 10 am Saturday. *snort* This kid.

Alright, I need to get to bed. I have a lot to do before the big homecoming...and I pretty much need to plan on not getting any of it done while Liam is awake. =(

Please keep praying for Morgan and her family. =)

With Love and HOPE,
Angela

Thursday, January 24, 2008 7pm

Hadley has requested the new songs. She loves them. She calls them "Delilah" and "The Girl Song". Anyway, that's why they are here. =) My little rockstar...




Hello,

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! =)

Enjoy.


Here are the slideshows:

Wednesday, January 23, 2008 9am

Please pray, pray, pray for our friend Morgan Faith today and ALL week.

Morgan is IN surgery and did extremely well this morning. Please visit her page for updates and to leave messages for she and her family.

With Love and HOPE,
Angela

Tuesday, January 15, 2008 2:20pm

I'll be placing a Mary Kay order on Friday (the 18th). If you need/want anything let me know. I ship for FREE. =) Angela Fox's Mary Kay Site

Thanks! =)





Hello All,


Before I say anything else I need to ask you to really storm heaven's gates for our little friend Morgan Faith. She has a heart surgery next week...and her parents have a lot on their hearts and minds right now. This is a truly CRITICAL point for Morgan's future. PLEASE pray for her and add her to any and all prayer lists you know of. She is an amazing person and is in need of her miracle!!! We have known the Keane's since shortly after Hadley got sick. They are a fellow Coastie family...and have been more like family to us since we met them. We love you Keanes and are praying constantly for that miracle!!! =)


Now, on to our update:

I can't believe how fast time is flying by. *sheesh*

Hadley is doing well. She is finally staring to 'even out' as far as her seizure meds are concerned. She's home from school today though. She slept in after having a hard time getting to sleep last night. Then when she did wake up she was crying for her daddy. This is the first patrol ever that she has even said much about him being gone...and she has cried several times because she wants or misses him. This mornings sadness, I think, was brought on by her getting to talk to him this weekend. The ship was in port and he got to call several times. So, I think she's just having a hard time 'saying goodbye' again. As hard as it is to see her struggle with this it is 'good'. This is 'normal'. She is making progress. It's almost bizarre to be around her because she is doing and going through so many things that are typical for a toddler...but she also has a LOT of typical 7 year old 'issues'. LOL! It's like living in the Twilight zone...or with Dr Jekyl/Mr Hyde. You just never know which Hadley you're going to get. =) We really just have to go with the flow.

She hasn't had any appointments or anything so there's no news to report there. No more vomiting spells etc. So that is awesome. =)

Liam is feeling better finally. He really had me worried there for a bit. This is the first time he has kicked a respiratory infection without steroid shots/nebulizer treatments and inhalers. So, this is a good thing. It's just hard watching him struggle to fight it for 5-6 weeks. But, he is better now. I'm knocking on wood that it was his one and only respiratory infection for the winter. I have no idea what we're going to do when he's in school next year and gets the creeping crud on a regular basis. LOL.

Keegan is turning 6 on Friday!!! Holy Smokes. He is doing well. He's had some behavioral issues since Brandon left...but nothing horribly major. Just a LOT of pushing boundaries and testing the stability and consistency of home life, I think. He's doing really well lin school academically. He's working hard to become a full blown independent reader. He's struggling with a few issues that I may have to seek some help with...but, overall he's doing really well. I hate to even say it aloud but I think we may be looking at a mild case of Asperger's Syndrome. It probably isn't anything that I would have noticed this early on if I hadn't done so much research for Hadley...but I did do the research and I think the diagnosis is in his future. Please be praying about that. I'm kind of torn on what to do. I want to give him every tool possible as early on as possible to succeed but, I also don't want to unnecessarily slap a 'label' on him and cause even more issues for him to deal with. Does that make sense?

We're going to Portland this weekend to celebrate Keegan's birthday. His only wish was to spend time with his best pal, Aubrey. So, that's what we're doing. We're planing on going to see The Water Horse and also to have dessert at Red Robin with friends and family. =) He's VERY excited. =)

Speaking of Portland...we STILL haven't gotten any orders. We're still hoping to get them in early February. The work from the top ranks down and are currently working on BM1 orders...so BM2's are next. So, hopefully in a few weeks we'll know where we're going. *rolling my eyes*

We are a little over half way through this patrol. It's gone by quite quickly actually...not that anyone but me is allowed to say that. LOL! There have been several port calls so we've gotten frequent phone calls. And the holidays helped pass time too. I'm so proud of Brandon. I can't wait for him to get home. =)

Well, I'd better run. Hadley and Liam are wanting to go out and ride bikes and the sun is actually out today. So, I'd better take advantage of that while it lasts. =) I have just one more thing to share. I got a Barnes and Noble gift card from Santa this year...with it I bought the "Deceptively Delicious" Cookbook. It's WONDERFUL. We've tried a few of the recipes so far...some were big hits, some I'lll need to tweak a little...but today's was a HUGE hit. SO yummy. So, I wanted to share it with you! =)

Chocolate Pudding

1/4 Cup trans-fat free margarine
1 Cup Avocado Puree***
1 Cup confectioner's sugar
1/2 Cup unsweetened Cocoa Powder
1 tsp vanilla extract
1/4 Cup cornstarch


In a medium Saucepan, melt the margarine over low heat. Stir in the avocado puree, sugar, cocoa powder, and vanilla. Cook, mashing well with a silicone spatula to smooth out any lumps of avocado, until the mixture thickens, 3 to 4 minutes. REmove from heat and gradually stir in the cornstarch. Serve warm or cool.

***about 1 1/2 medium avocados. Remove flesh from peel...and remove pit. Chop and mash then puree in a food processor or blender for about 2 minutes. (I use my magic bullet). You can also do more and freeze it for future use!!!!

I double this recipe and it makes about 2 1/2 Cups. The kids and I LOVE it!!! =) And Avocados are full of vitamin E, monounsaturated fat and soluble fiber!!! The best part is that they have NO idea they're eating avocado! Yay!

Alright. Better run before the natives rebel.

Have a great week and weekend. I'll update with pics next week.

With Love and HOPE,
Angela

Thursday, January 3, 2008 8:40 PM

Hello All. Happy New Year. I hope your holidays were safe and happy. We had a great Christmas, a quiet New Year and now we're home settling back into our usual routine. The most challenging part has been getting the boys back on their usual sleep routines.

Hadley is doing well with her still escalating seizure med doses. She's not sleeping nearly as much now...but has had some mood and behavior issues that I'm really hoping even out. She has been quite argumentative and even defiant. Sometimes it's really hard to sort out the medication side effects from the 'typical' challenges of childhood. We did have a vomiting episode on New Year's Day. It was really bad. I felt just horrible for her. So, either the abdominal migraine med needs to be increased or these aren't migraines. ***grrr*** Two steps forward...one step back.

Brandon is doing well on patrol. We got to talk to him a few days after Christmas. The kids loved talking to him and I loved that he sounded good. I felt so bad for him...it was nice to hear that he was doing ok. =)

Well, I'd better run. Lots to do to get caught up.

Have a great weekend.

Angela

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