Hadley has officially entered hospice care. Please see her site for more information. www.HadleyFox.com
Please keep our family in your prayers.
Friday, August 29, 2008
Saturday, August 23, 2008
Just in case you don't read Hadley's page...
here is an update. I wrote this on Thursday...the day we had the appointment for our oncology team to write the refferal and transition Hadley's care to Hospice.
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
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
Monday, July 21, 2008
How Are You?
The question everyone wants to ask, has asked and then immediately felt bad or has wondered and decided not to ask. "How are you?" I'll spare you all the agony of asking or contemplating asking. I'm just a good friend like that. =)
I am all over the place. Today has been a relatively bad day so usually I wouldn't be sharing...but, I feel like I'm more honest when I'm raw and hurting. I have a lot of feelings and thoughts that I'm not comfortable sharing yet. I have my moments of total panic, heartache, sadness, defeat, anger, physical illness and even entitlement. I'm sure all of these things are normal. The fact that they are doesn't make me feel any better or any more normal for that matter. I feel like our family, our situation, our lives and our losses are totally unique. I know that isn't true but, it feels that way. It makes me really, truly heartsick to acknowledge that SO many other families have traveled a path quite similar to ours.
Normally, next week we'd be doing an MRI to check on the tumors...this has been our schedule for the past 2 years now. I think my body is preparing for it even though it's not happening this time around. Another peds brain tumor parent shared a similar feeling a few weeks ago. I totally understand what he was saying now. At the moment my emotions are all over the place. One minute I'm fine...the next, watch out. I'm a mess.
For, the most part though I am doing well. We are focusing on having FUN. There is no point in wasting days away being sad and trying to anticipate the future. Hadley makes it very easy to live in the now and enjoy every moment of it. In my quiet moments though, I am often scared, sad, lonely, etc.
The boys have a healthy grasp on what is happening. They know that Hadley's tumors are growing and that she will eventually die. They understand, as much as they can, what it means to die. I do purposely allow myself sad moments with them so that they understand that it is OK and normal and encouraged to express their feelings. One area that we do need to work on is encouraging people to shower them with love and kindness. Hadley is getting 'spoiled' from all directions. Everybody wants to help make magic for her (rightly so). But, we do need to remember that the boys are only 4 and 6 and need a little extra 'loves' during this too. So, we are going to try and make one on one 'date' times for the boys with Brandon and I.
Overall...I feel like we are all living well. We are making the most of the days we have. There is a lot of pain below the surface...but, we're dealing with it as we can.
Thanks for checking in on us. Please make sure to visit Hadley's site for pics and more detailed day to day type updates. www.HadleyFox.com
I am all over the place. Today has been a relatively bad day so usually I wouldn't be sharing...but, I feel like I'm more honest when I'm raw and hurting. I have a lot of feelings and thoughts that I'm not comfortable sharing yet. I have my moments of total panic, heartache, sadness, defeat, anger, physical illness and even entitlement. I'm sure all of these things are normal. The fact that they are doesn't make me feel any better or any more normal for that matter. I feel like our family, our situation, our lives and our losses are totally unique. I know that isn't true but, it feels that way. It makes me really, truly heartsick to acknowledge that SO many other families have traveled a path quite similar to ours.
Normally, next week we'd be doing an MRI to check on the tumors...this has been our schedule for the past 2 years now. I think my body is preparing for it even though it's not happening this time around. Another peds brain tumor parent shared a similar feeling a few weeks ago. I totally understand what he was saying now. At the moment my emotions are all over the place. One minute I'm fine...the next, watch out. I'm a mess.
For, the most part though I am doing well. We are focusing on having FUN. There is no point in wasting days away being sad and trying to anticipate the future. Hadley makes it very easy to live in the now and enjoy every moment of it. In my quiet moments though, I am often scared, sad, lonely, etc.
The boys have a healthy grasp on what is happening. They know that Hadley's tumors are growing and that she will eventually die. They understand, as much as they can, what it means to die. I do purposely allow myself sad moments with them so that they understand that it is OK and normal and encouraged to express their feelings. One area that we do need to work on is encouraging people to shower them with love and kindness. Hadley is getting 'spoiled' from all directions. Everybody wants to help make magic for her (rightly so). But, we do need to remember that the boys are only 4 and 6 and need a little extra 'loves' during this too. So, we are going to try and make one on one 'date' times for the boys with Brandon and I.
Overall...I feel like we are all living well. We are making the most of the days we have. There is a lot of pain below the surface...but, we're dealing with it as we can.
Thanks for checking in on us. Please make sure to visit Hadley's site for pics and more detailed day to day type updates. www.HadleyFox.com
Monday, July 14, 2008
Short, not sweet.
Hadley's team in Seattle and I have decided that it is time for a new chapter in her journey. We will be contacting Doernbechers this week to enroll in their comfort care program. Our doctors have given us a guesstimate of another 6-12 months with our sweet girl. Enrolling in this program will allow us to spend as much time as possible having fun and staying away from the hospital (it is a home care program).
Hadley is such a gift that we HAVE to focus on the joy she brings to our lives and not the heartbreak we are feeling. She honestly makes it hard to be too sad. She loves life so much. She has always done things her way and in her time...I am finally growing wise enough to embrace this concept and enjoy life with her. =)
Thank you for your continued love, support and prayer. We truly appreciate every last one of you.
Please plan on joining us for Hadley's Annual Birthday Celebration. This year we'll be hosting a "Royal Ball" (think prom for an 8 year old with a Disney princess theme). =) Saturday, September 27th 2008. More details will follow.
Angela
Hadley is such a gift that we HAVE to focus on the joy she brings to our lives and not the heartbreak we are feeling. She honestly makes it hard to be too sad. She loves life so much. She has always done things her way and in her time...I am finally growing wise enough to embrace this concept and enjoy life with her. =)
Thank you for your continued love, support and prayer. We truly appreciate every last one of you.
Please plan on joining us for Hadley's Annual Birthday Celebration. This year we'll be hosting a "Royal Ball" (think prom for an 8 year old with a Disney princess theme). =) Saturday, September 27th 2008. More details will follow.
Angela
Friday, June 27, 2008
Do you believe in magic?
Hadley still does! =)
Our sweet girl, Hadley, was born on September 27th, 2000. She was perfect and gorgeous and we were so thankful for her. After a few years of going around and around with doctors about something being 'wrong' we finally got a definite answer. Yes, there was something wrong (I wasn't losing my mind after all). Hadley was diagnosed on 4-22-04 at the age of 3 with a very large brain tumor. She has been on treatment for her tumor since then. In February of this year we got the news that she had relapsed. In addition to the original tumors on the right side of her brain, she now had tumor on the left side of her brain. The new tumor was growing much quicker than the original tumor areas. On May 30th we did another MRI that revealed even more growth and spread. The following week we, with her medical team, made the heartbreaking decision to end treatment and let Hadley have some magic in her life.
Hadley is a 7 year old little girl who loves life. She is happy and funny and loves to be the center of attention. She loves all things frilly and girly. She has a beautiful innocence that I am very envious of and grateful for
Hadley has two brothers Keegan (6) and Liam (4). They are great boys who have been wonderful brothers to Hadley. She loves them both dearly. I'm sure that the compassion and acceptance they have learned through Hadley's journey will carry them far in life.
Hadley's daddy, my husband, is a Petty Officer in the US Coast Guard. We'd love nothing more than to be able to grant Hadley's every wish while she is here with us. But, like most families these days, we are living paycheck to paycheck. If you are willing and able to help us give Hadley some magic we would be eternally grateful.
To learn more about Hadley and her family please feel free to visit: www. HadleyFox. com
Thank You So Much!!!
Angela Fox
Friday, June 20, 2008
What time is it? Summer Time...
If Brandon were sitting here his eyes would be rolling back in his head. Hadley is on a High School Musical 2 kick. She loves this movie. Adores it. I don't know that Brandon could hate it any more than he does. *ugh* Even I have had the summertime song stuck in my head. Maybe I'll add it to our music queue so you can enjoy it as well. *snort*
So, summer break is under way. The kids are all out of school. We are in Portland. All of our household goods are in storage and we are technically homeless. *snort* We were supposed to be renting a house from some friends in Portland who had accepted a job in San Diego. That job wound up falling through and now they are a couple weeks from the end of the application process with another church in SD. So, we're sort of all hanging out in the house until we know what's going on. Thankfully it's a 6 bedroom house so nobody's sleeping in the living room...yet. =)
I have been sick for a little over a week now. It started out seeming like allergies but it wasn't long before I realized it was obviously not. I am just now starting to get my voice back...but, it's still all Bonnie Rait-ish. Hopefully it'll be back to normal soon. =) I've never had a super feminine voice but, I really don't love sounding like an ultra heavy smoker...or a guy. *ack*
Keegan is in swim lessons and loving it. Hadley and Liam will be signing up soon. Keegan's friend Aubrey was signing up for this session and I decided to let him take them with her. He's been having so much fun and is so proud of his accomplishments. =)
Liam, in true little boy fashion, is covered from head to toe in scrapes, scratches, bruises and scabs. He is a total brut...until he gets hurt...then all he wants is his mama. It's so hard being four. Poor Liam.
Brandon has reported to his new unit. He's been there for a full work week now and is really impressed. He's excited to get to work and complete his qualifications so he can start gaining responsibility. I'm looking forward to the station schedule. He'll have a few weekdays off every week and will have every other Fri/Sat/Sun off. The only downfall is that when he's working he's THERE. No coming home/leaving the station etc. So, I guess it'll kind of be like a business trip or two every week. Except that when he's home...he's HOME. =) I think it'll be nice...we'll see.
In case any of you missed it on Hadley's website...she was deemed "terminal" a few weeks ago. I really hate that word but, it is what it is. We have no idea how long we have with her. I think we may do an MRI at the end of the summer if there isn't an obvious sign of decline. But, she is on what the medical field calls "compassionate care". Meaning that we have changed our focus from treating the tumors to keeping Hadley happy and comfortable. Obviously this is a really hard time for our family. We would appreciate all the prayers and love you can spare.
Alright, I'd better wrap this up.
Sunday, June 1, 2008
Hadley Update...
Friday was MRI day for Hadley. It wasn't a good one. Please see her page for more details.
www.HadleyFox.com
Please pray for our girl!!!
Angela
www.HadleyFox.com
Please pray for our girl!!!
Angela
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