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Tuesday, December 25, 2007 7:30pm MST

Auntie Hayley (Brandon's sister) did my hair on Wednesday. As soon as I got home Hadley started commenting on my "beautiful colors" and asking for beautiful colors of her own. She insisted on pink. So, she got them. What better time to be lighthearted and wacky than childhood, right?!? She is in LOVE with it. =)

Here are a few pictures:

Merry Xmas!!!

Monday, December 24, 2007 10:45pm

Hadley said grace at Christmas Eve dinner. I was proud of her for even doing it with so many people sitting there...then she prayed the following and my heart melted!!!!


"Dear God,

Thank you for this food. I love my Daddy............and my mommy and Keegan and Liam. I'll eat all my food and drink all my milk.

In Love Name,
Amen"


She was so grown up and bowed her head and clasped her hands and did so well. She can be SUCH a stinker...and then sweet Hadley kicks in and you just have to melt.


Merry Christmas Everyone!

Please pray for the crew of USCGC Mellon and their families! We love and miss you Brandon/Daddy!

Thursday, December 20, 2007 9:40pm MST

Just a quick note. We're really getting excited for Christmas. There's is snow on the ground and more falling...Hadley's very groovy imaginarium dollhouse is all put together (OH how I wish Brandon were home for THAT!)...all the gifts are wrapped and under the tree...and we even sang some "Christmas Carols" in church this morning. =) It's begining to look a LOT like Christmas.

Hadley is sleeping a LOT now. Yesterday was seizure med dose doubling day so she is just pooped. Poor baby. She stayed awake through church and managed to eat lunch...and then passed out on the love seat and hasn't stirred yet (several hours have gone by). Tuesday is the last day at this dose, before we go up another 150mg, so hopefully she'll stay awake a little longer. =/

THe snow is beautiful, the gifts are wrapped, the kids are excited...now we're just waiting for Santa to show up.

Merry Christmas Ya'll!!!




************www.MaryKay.com/AngelaFox****************
Mama Fox's Mary Kay Site



Hello All,

We made it to Idy-Ho safe and sound and apparently at just the right time. We managed to hit I-84 right in between storms and pretty massive interstate closures. It's really weird though because the roads were totally clear. I mean TOTALLY. Huh. Anyway, we made it here safely and the kids are already having a blast. AUntie Hayley has already come by and given Hadley's hair a trim (YAY!) and the weather was nice enough to play outside for a bit as well. Keegan is talking a lot about missing daddy...and even Hadley has said she misses her daddy. That is a first. She usually seems so indeifferent until he comes home...then she is ecstatic for him to be back. Weird. Liam has expressed some strong oppinions about daddy being gone. He seems to think it's Santa's fault. You have to wonder what goes on in those little minds some times.

Brandon left a little over a week ago and has already been able to call from their first port. He sounds good. Very sad to be away from everyone over Christmas and the kid's school break...but still very possitive and excited for the patrol. He's still doing really well and working very hard to get as amny qualifications etc completed. I'm so proud of him and love him so much. Please pray for he and the rest of the crew of the USCG Cutter Mellon during this deployment.

Still no 'orders' on where we'll be reporting to next summer. We're not really expecting anything until mid February. If we get them sooner that'd be great...but, we're not really expecting anything soon. We're really anxious to find out and start planning our next adventure. =)

Hadley is finally back on seizure meds. We started Trileptal Tuesday night. It'll take us two weeks to get her up to a full dose. We'll likely be adding another drug in the next few months. But for now it's 'just' the Trileptal.

Thank you for checking in on us. Please remember to pray for and love on our sweet little friend Morgan . She's got a lot going on and right now and she and her family could use all the love and support we can spare. =)

Have a VERY Merry Christmas!!!!

The Foxes =)

Monday, December 3, 2007 10:15pm

Don't pass out...I'm updating again...twice in one week. =) I know.

It has been a weird few weeks here. Hadley's tumor is stable...yet we face SO much. I have been feeling really discouraged. When your child has just been diagnosed you don't really know what you're getting in to. When your child is on treatment you think someday things will be better, maybe even normal again. Then, treatment ends and things are not normal. The neutropenia and endless hours in the Hem/Onc clinic every week go away. But, you are left with this child who is scarred, tattered, bruised...never the same. Seizures, vomiting, sleep issues, endurance issues, low blood counts, hormone issues, headaches, migraines...and dare we even worry about reoccurrence, or secondary cancers. The dream of Hadley returning to the healthy child she was is gone, long gone. It's been extremely difficult to let go of that. I never expected it to be easy...but to be honest I never expected it in the first place.

Hadley vomited again on Friday. She looked really pale all weekend. Brandon and I are really at a loss. Our NP wrote a script for the medication she took back when she was suffering from abdominal migraines (also called cyclic vomiting syndrome). I didn't fill it because none of us (the NP included) really thought that's what was going on. The only side effect the drug has is sleepiness (it was actually formulated as an antihistamine) so I'm going to fill it and hope it helps. It's worth a shot. I just don't know what else to do.

Her LP site healed up nicely. No infection or leaking, she never once complained that it was even a tiny bit sore, even when I asked her. She is happy and smiley and as charming as always.

Wherever we go Hadley charms the pants off people and spreads so much happiness. She can be such a little turkey...so feisty. She has really developed a little attitude. But she is such a happy little person. She really blesses so many hearts and I'm so proud she's mine. I have taught this child nothing...she teaches me SO much. She and her brothers have such strength and tenderness, such happy spirits. They really are amazing people. I am SO proud of them. I just really can't say enough about how amazed I am by the people they are becoming. I see great things for all of them...and am so excited to watch them grow. They really are the best part of me.

Brandon is getting ready for another deployment. He leaves in a little over a week and will be gone for a few months. This will be our 'millionth' holiday apart but, our first Christmas. I have already been crying off and on for weeks. It is hard enough for any family to have their family member away for a major holiday...but, in our case all the what if's can really weigh on your heart. I am so proud of him. He sacrifices so much for his country and his family. I love you Brandon...and will pray every day for your safe return home.

We drove through a 5 mile long lights display in a big park near us tonight. The kids LOVED it. It was really cool. We sat in our warm car listening to Christmas carols, eating candy canes, and ooohing and aaahhhiing at lights. We went to Dairy Queen afterward...the kids were chatty and funny. They're in that great age group that is old enough to hold extremely entertaining conversations...but still young enough to drip ice cream all over their faces while doing so. =) I love it. We came home and Hadley had to get ready for bed (school tomorrow) but the boys and I have made a tradition of watching Extreme Makeover Home Edition on Sunday nights. The boys love it. Liam loves the destruction of the old home. Keegan enjoys seeing the new homes and really loves that the families that are so in need are getting such an amazing gift. He loves seeing how happy they are. =) I just enjoy my family so much. Being a stay at home mom can be a challenge. It is the most demanding job I've ever had. But, I am so lucky to be able to have done it. I really do enjoy these people. =)

I took a big step this weekend. I signed up to become a beauty consultant with Mary Kay. *gasp* I know. It is a really good opportunity for me and I intend to make the best of it. I have high hopes not only financially but, personally as well. I really need to make some changes in my life and I feel that this choice ill help foster that change. I am really excited and a little nervous. So keep me in mind when you're in need of skin care and beauty products and also in your prayers as I embark on a new adventure.

This week will be busy but, hopefully a positive one. I'll update again soon...

With Love and HOPE,
Angela

Thursday, November 29, 2007 2pm

Hello,

Hadley did AWESOME with her Lumbar Puncture. She had anesthesia, just a mask-no propfol or anything, so that she could be perfectly still etc. So she woke up quickly and did really well. Her only complaint was being extremely hungry. She says she has NO pain. NONE. She doesn't appear to have any bruising at all. Her band aid has been nice and dry (no fluid leak etc.). So, overall she and the docs did an EXCELLENT job. Our only problem is that she's supposed to be lying down and resting and she is wanting to run around and play. She keeps flopping down on the couch etc. So I know she really isn't sore at all. Pretty amazing for just having had a needle in her back and spinal fluid drained. Crazy kid. AND...we were able to get back in time for Keegan to go to school (on time even). =) We are getting so good at this stuff. Ha ha.

So, the neurosurgeon said that her pressure is well within normal limits. *sigh of relief* No shunt at this time. Yay! We have our appointments on 12/13 and 12/18 with neurology for an EEG etc. Hopefully we'll get some 'solid' answers there and will be able to get her some relief from all of this. The surgeon was really glad that we decided to do this since it went so well. Now we have solid answers about her pressure and have ruled it out as a problem before we see neurology. So, that's good. Hopefully we're getting to the final stages of sorting this mess out.

Our girl had a seizure at school on Tuesday. She was walking in the hall and fell during the seizure and hurt her knee. Following the seizure she wouldn't bear weight on her legs. They, obviously, called to tell me and I went and got her. She insisted I carry her...when I did force her she hobbled a bit on it and honestly appeared to be in pain. We went straight to the ER at Madigan (after dropping Keegan off at school on the way). We sat in the waiting room for 4 hours and spent another hour in a room. Did I mention I had Hadley AND Liam...and this is an Army hospital ER...not a CHILDREN'S hospital. *urgh* Anyway, she went through two ice packs and had a dose of Ibuprofen while we were waiting. When the doctor finally came in he examined her then asked her if she wanted to march with him. She said "YEAH!" and jumped out of bed and started marching...he asked her if she could jump...sure enough the little fart starts jumping. I could NOT believe it. I had been totally fooled. She has finally figured out that she can, and apparently knows exactly how to, milk her medical situation. I still can't believe it. Anyway, what I'm thinking probably happened is after the seizure they probably tried to stand her up...she's usually not able to stand on her own right away...so the probably asked her if she hurt her leg...and then it just snowballed from there. She does have a small bruise there now...but c'mon. *laugh*

So...that was our super fun week. =)

Hope you are all having a happy and safe holiday season. =) Thanks for checking in and continuing to pray for our girl. =) I'm hoping to get some 'christmas' pics snapped this weekend...and get cards ordered soon. I would LOVE it if our regular guestbook signers would email me their mailing addy's so I can add you to our list. =) Email address is at the bottom of the page. FoxiFamily@yahoo.com

With Love and HOPE,
Angela and Crew

Wednesday, November 21, 2007 7:45 pm

Upcoming Appointments:

11/29 Lumbar Puncture in Neurosurgery
12/13-EEG (seizure testing)
12/18-Follow up with Neurology-EEG results/new meds etc.


We're finally home. Remind me not to ever accept an appointment the day before a major holiday. *sigh* traffic was horrid. Absolutely horrid. LIke, it took us over 4 hours to make a 1 hour drive (around 65 miles) horrid. Fun times. =)

So, the appointments themselves went well. The neurosurgeon wasn't entirely convinced that Hadley's issues are being caused by high intracranial pressure. But he's also not sure that it's NOT the cause. We know that Hadley has hydrocephalus. Her ventricles have been too large for years. We're just not certain that this is causing the symptoms we're seeing now. Placing a shunt would be a LOT easier on Hadley than the neurosurgeries she's already been through...BUT, it's also not a decision we should take lightly or make quickly. Once a shunt is placed you can never NOT have one. There is a certain degree of 'maintenance' and risk of complications. If we aren't in an emergency situation where it is clear that she HAS to have one...it is a little trickier to figure out how much she'll benefit.

So, having said that, after a lot of discussion Brandon, the neurosurgeon and I came to the conclusion that we'd do a Lumbar Puncture to measure the pressure and drain some fluid off and go from there. If her pressure looks high or on the high side of normal we'll place a shunt. If not, then we'll obviously wait and watch. The LP is scheduled for a week from Friday (the 29th).

Ophthalmology went well too. Our Dr didn't feel like there was a lot of pressure build up. She did see that the right nerve was paler/more damaged than it was in July. BUT, her vision measured a bit better. So that's good. She agreed with my conclusion that the eye deviation etc is most likely seizure related. Her exam didn't turn up any answers as to why her eyes would be doing what they are...and that eye deviation is a VERY common symptom of seizures in the frontal and temporal lobes.

So, it's looking like our appointment with neurology will be the most productive. Have I said lately that I hate seizure meds? I had really hoped that our sweet girl wouldn't need to go back on them. But, at this point we really don't have much of a choice. =(

Please keep our girl in your prayers. My mommy heart is having a hard time wrapping itself around the idea that this is my "healthy" child. This is our "doing really well". I swear the last 4 years have been constant cycles of grief. If it's not one thing. I hate to complain. Especially at this time of year. Especially the day before Thanksgiving. There are so many families who would do anything to be in our shoes...to have their children back in their arms. My brain knows that...my heart knows that...sometimes I just have to work harder to not forget. I am thankful. Very Thankful.

Thank You for checking in and continuing to pray for our girl.

Now I must go save my husband from our three rascally children who are armed with at least two Nerf Guns. I'm not sure his life insurance covers Nerf Fatalities. LOL! =)

Have a VERY Happy Thanksgiving.
Angela

Monday, November 19, 2007 8pm

Happy 4th Birthday "Baby" Liam!!! Saturday was Liam's birthday and party. He had a blast. It really was a lot of fun. =) I haven't uploaded pictures yet...I will definitely share when I do get them uploaded. Until then...here are a few photos of my sweet monkey boy over the past 4 years. =) Where does the time go?

Make video montages at www.OneTrueMedia.com

Tuesday, November 13, 2007 1:30 pm

Upcoming Appointments:

November 21st-Opthalmology and Neurosurgery
December 13th-EEG
December 18th-Neurology



Hey there,

I figured it was time to update. Hadley is finally back at school this week. To say that she was excited is a total understatement. She hopped, skipped and jumped down the driveway to the school bus. She greeted her bus driver with a very cheery (read-TOO cheery for me at 8am) greeting. Hadley is feeling good. She hasn't throw up for several mornings now. YAY!!! But still seems to be having problems with her eyes and some pain. But nothing too drastic.

Hadley has a lot of upcoming appointments. She sees Ophthalmology and Neurosurgery on the 21st. On December 13th she has an EEG scheduled and a follow up with neurology on the 18th. So, we'll have a lot of back and forth to the hospital. It still takes us a little over an hour to get there...longer if there's traffic. I've never been more grateful that Children's has a playroom for siblings. Brandon will be deployed for the December appointments and may not be able to get off for some of the others. It's hard to get 'off' around the holidays because so many people are on leave...not to mention that they're preparing to deploy. So, I'll be on my own for most of the appointments. Like I said, thank GOD for the sibling playroom. Whoever thought of that and donated the money for the program has my eternal gratitude! Now we just have to pray the boys both stay healthy enough to be able to go. LOL! We are going to try and schedule surgery quickly after our appt on the 21st...so we can get it 'done' before daddy leaves. I'll keep you up to date.

I wanted to make sure to thank everyone for your thoughts and prayers and your encouraging words in emails and guest book entries. They really do mean so much!!!

This time of year is always so hard for me. I can't ever really pin point exactly why but, it is. I think it may have something to do with Hadley's birthday then the Holidays. I have this nasty habit of cooking up crazy ideals in my mind and then being disappointed when reality falls short. My ideals never include a sick Hadley, a deployed husband or a busy family who barely has time to pause for holidays. I always have that stupid ideal in my head of a house full of family...a huge table of people and food...enough gifts to nearly make you ashamed...a fire in the fireplace...and grandpa dressing up like Santa and surprising the kids. I just want to be able to give my kids some magic just one time a year. They face so much during the rest of the year...they deserve it. I know...welcome to reality, right?!? I'm just sad about a lot of things this year. I'm sure I'll feel better...and I am grateful that we at least get Thanksgiving with Brandon this year. I just wish that the world could slow down a little bit. That we could all remember what's really important. I know that the problem is mine...my standards...my expectations...my problem. I just need to let myself be sad and angry for a bit. I'll pull out of it, I promise.

I recently found and framed a picture I'd been trying to find for quite a while. it is really one of my VERY favorite pictures. Hadley is 2 weeks old in it. Brandon had just returned to work and had duty one of his first days back. Hadley had an appt. at the pediatrician and she and I walked around town afterward. In Astoria the ships moor up right downtown at a public pier. We went down and visited him when he happened to be on watch at the quarter deck. Hadley has always been a daddy's girl...and she sure had Daddy wrapped around her finger from her very first breath. Every time I look at this picture I remember how I fell even more in love with him the day she was born. This picture brings back that feeling immediately. =) These were VERY happy times. Just about perfect, I'd say. It's a picture of a picture (scanner isn't set up) so sorry it's kind of weird... Anyway...here's the picture:




Take care ya'll. Remember to slow down...pay attention to the things that matter...

Pray for our friend Morgan and her family.

With Love and Hope,
Angela

Thursday, November 8, 2007 4:28 PM CST

~Update Friday Night~

I spent a lot of the day on the phone today. * Note to self...next time we have a small crisis and I need to be on the phone with the hospital for hours I need to not have to do it on a school holiday. Grrrr*

So, we are still working on getting a neurology appointment. Ironically, our "urgent" referral was still in 'review'. Ha ha...so I have to call back on Monday to get that set up.

Ophthalmology and Neurosurgery appointments are on the morning of the 21st. It would be nice if we could get neurology in on the same day. I'm not holding my breath though. =)

I am also going to call our all knowing/all wise/very caring NP in Hem/Onc and talk to her about our 'schedule'. On top of all these appointments and stresses...and hope for improvement...we have to take into account that Brandon is leaving for the winter in just a few weeks. *sigh* Excuse me military can you plan your deployment around our child's neurosurgery? Excuse me neurosurgeon and entire OR team could you plan our child's neurosurgery before my husband's deployment??? Ack! Which one sounds more ridiculous? *sigh*

So, that's all I know for now. I'll keep you updated as I find out what's going on myself. =)

Angela


****added info at bottom of journal****


We're home. It was a long day. We've got good news and bad news...which is better than bad news and worse news, right?!?

The tumor is stable. yay! =)

The hydrocephalus issues are not. It looks like Hadley needs a shunt.

Hadley has had hydrocephalus for years...at least since the tumor was diagnosed...probably for quite some time before we found it. It was a problem before surgery...but, has been asymptomatic since then. What we've seen over the last week are symptoms of the hydrocephalus getting worse.

So, we have 2 weeks to get into ophthalmology and hopefully neurology and then meet back up with neurosurgery to make a final decision and/or schedule surgery.

Let me just tell you how comforting it is to be leaving peds neurosurgery and have an NP tell you again...that if anything gets ANY worse...AT ALL...to come back immediately. Do not pass go, do not collect $200.00, do not call and make an appointment. Super.

Well, I'd better run. My girl has been complaining that her eye hurts etc...she's making me nervous.

Thank you for your prayers and thoughts...they mean SO much to us.

Please remember to keep our sweet friend Morgan and her family in your prayers!!!


With Love and HOPE,
Angela

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


I realized that some of the things I mentioned aren't going to be well understood since they're not exactly 'common' amongst healthy kiddos.

Here's a few links to help explain for those who wish to understand a little more.

Hadley has Hydrocephalus . This condition (hydrocephalus), which has progressed slowly over time, is causing Increased Intracranial Pressure .

The procedure to help the body drain spinal fluid and relieve pressure is called Ventricular Shunting . It is a neurosurgery. Hadley's skull will have to be opened again, as the shunt (s) is/are placed in the ventricles of the brain.

As we learn more about when our appointments will be for prep etc I will let you know.

Thank you again for all your prayers and support!!!

Monday, November 5, 2007 3:45pm

Wednesday Night.

Thank you Amber B for the beautiful graphic!
Peace and Results are what I asked for in prayer requests almost 2 years ago. We were deciding wether or not to enroll Hadley in the phase 1 trial. I was terrified. Scared of the drug, scared it wasn't the right drug for her. Terrified it wouldn't 'work'. Peace in my mommy heart and for sweet Hadley..and results from the drug. It was my mantra...what I repeated over and over when I was scared...when we were stuck in the hospital for the umpteenth time...when I hurt every single night over 'making' her swallow 4 and 5 large capsules a night...

Peace and Results...we are still praying for the same things we were 2 years ago.

~~Please keep our friends The Keanes in your prayers. Angela K is like a sister to me...and my heart is broken for she and her family. They could really use prayers for peace, love, and LOTS of smiles and happy times. Morgan is an amazing person...please pray for she and her family! ~~

I'll update as soon as we're home tomorrow afternoon!


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


Really quick journal as I'm on my way out the door to get Keegan off the bus. I'll try and update again later.

Hadley has had a really rough week. She's had so many problems. Incontinence, lots of seizures (which caused a tumble down our stairs), early morning vomiting 5 out of 7 days, and a noticeable change in her facial droop and left sided weakness. This picture was taken last night:




Because of all this the MRI has been moved up a month to Thursday (the 8th) morning at 7:45.

Please keep our girl in your prayers. She just does not look well at all...I am so bummed because she has been doing SO awesome.

I am hoping and praying that this is a really weird bug that she's having a hard time shaking or something...but the symptoms don't look good.

With Love and HOPE,

Ange

Monday, October 8, 2007 6:34 PM

Hello All,

Time has been flying, as usual. Hadley's birthday party was a BLAST. We had a huge turn out. Hadley was just tickled to be the center of attention (of course). She also got a lot of great gifts...lots of great Fall/Winter clothes and baking stuff and Barbies...and toys...and all kinds of great stuff. I don't know about Hadley but, I was overwhelmed. LOL!

I don't have pictures yet because I only took about 2...so I'm waiting for a disk from GG and Papa. =) Then I promise to post some. =)

Hadley DID love her Barbie Jeep. She's had a little bit of a hard time getting the whole steering thing down. We took a walk tonight and she seemed to be getting a bit better toward the end. Liam, however, is a natural. I swear he just jumped in and took off. Ha ha. Luckily Hadley is just as happy having Liam drive her around as she is driving. People at her party kept saying "look it's driving Miss Hadley"; =)

Hadley is doing well. She's been pretty tired. She was fast asleep when the bus got her home today. Poor dolly. She and Keegan and I have all been kind of fighting something off though...so that could be it.

Parent/Teacher Conferences are next week. As well as Hadley's Endocrine appt at Madigan. She'll be getting a 2 hour glucose test to screen for insulin resistance. Right along with Mommy. Urgh.

Aside from the party and the upcoming meetings and appts things are status quo. We're still waiting for the 'final' shopping list to come out to pick our favorite jobs for next summer and begin the waiting game...again. LOL!

Thank you for continuing to check in on our girl...I still can't believe she's SEVEN. Oy.

With Love and HOPE,
Angela


I almost forgot to add the picture of Hadley's new hair cut (compliments of Auntie Hayley). =)

Tuesday, September 25, 2007 4:35pm

I can't believe my baby girl is turning SEVEN. When did this happen? =) Seven years old!!!

Thursday is her actual birthday and her party is on Saturday afternoon. She has requested a "Baker Lady" party...so she's getting a topsy turvy cake, we're decorating sugar cookies, and wearing chef's hats and maybe aprons. I think she's gonna have a blast...she usually does as long as she's the center of attention. =)

I have it on good authority that there's a Power Wheels Barbie Jeep hidden in the garage for her. =) She's been extremely persistent about wanting, No, NEEDING one. She's a bit on the big side (height wise) for it...but, just try and convince her of that. One thing I know for sure is...She's gonna FLIP her nugget when she sees it. I'll get it on video so I can post it. =)



Our family got big news late last week. We are being short toured, which basically means that since Brandon got promoted he's overqualified for his job and has to switch to a different one. In the military this usually means a PCS or in civilian terms MOVING. Yes, AGAIN. So...we have spent hours (and hours...and some more hours) looking at the billet "shopping list". We've put together what we think is a really great dream sheet. Our detailer will take it into consideration when he/she decides where we'll go next. Our choices all went through a very rigid screening. They are all jobs that would be great for Brandon's career AND are in areas that have excellent hospitals and resources for Hadley. We're pretty excited for this new adventure...I have a good feeling that it's going to be a great time in our life. Of course, having said that, it's always challenging (at best) to move a child with such complex medical and cognitive/academic needs. So, please pray for smooth sailing where that is concerned. =)

I'll update again after the weekend...I'll try and upload pics in a timely fashion. I know I've been really bad about it lately. =)

Thanks for checking in!
Please remember to leave some Birthday wishes in the Guest Book for Hadley! =)

With Love and HOPE,
Angela

Wednesday, September 12, 2007 2:30 PM CDT

A Coastie Wife friend of mine made these for us. I thought they turned out great and couldn't wait to share!!! =) Thanks again Amber!!!

Hello All,

Hadley's MRI was this morning at 8am. The results were good...MUCH better than I was expecting. We're stable!!! =) It looks like that one doctor who thought it was just a change in dye absorption was right (thank GOD)! HOORAY!!! =) Stable is good...it'll buy Hadley more 'off treatment' time. Yay again! =)

A "stable" scan means that there is no significant change in the tumor. The only difference they measured was a 0.5mm increase in one of the areas. Obviously that is TINY...so officially it's called stable or 'the same'.

Hadley is looking and feeling great these days. She's doing so well in school that I totally anticipate another school year of huge academic strides. =) Can you tell I'm a little happy?

In other news it is looking like Hadley will need to start treatment for insulin resistance (sometimes referred to as 'pre diabetes'). We have a strong family history of type 2 diabetes and apparently steroids (which Hadley has been treated with numerous times) don't help matters. I'm just thankful that there's something we can do to 'put off' full blown diabetes a little longer.

Thank you for the thoughts and prayers! It is a total miracle that we are working on 2 years of stable tumor. The next MRI will be in mid December...and that will be the 2 year mark! =) I am totally amazed.

With Love and HOPE,
Angela
www.HadleyFox.com

Friday, September 7, 2007 11:15pm

Hadley's 1st day of 1st grade...=)

Keegan's 1st day of Kindergarten...=)

Short entry today. Please email/write to your representatives and help us spread the word.

Thanks!




repost of a bulletin from Kids' Cancer Crusade

"One child that suffers from cancer is one too many."
Rep. Deborah Price (March 15, 2007)

There are over 2300 friends on this page. If each one of you distributes this information (blog, bulletin, email...) just think of how many members of Congress could be persuaded.

Go here and read about the Conquer Childhood Cancer Act of 2007. Then, on the right hand side of that page is another link to a fool proof process of writing to your member of Congress. Let them know how critical it is that we invest in finding a cure for these kids!!

(aside, this same bill died in committee last year as the Conquer Childhood Cancer Act of 2006 - it never made it to the House floor for a vote)

Here is the linked address in case the link doesn't work...or for forwarding purposes: http://www.curesearch.org/news_and_media/news_article.aspx?id=4612

Wednesday, August 29, 2007 11am

Hello,

I know it's been a while again. Sorry. I don't really have much to write about. School was supposed to start tomorrow...but our teachers announced a strike last night. The schools in our district are closed for Thursday and Friday...and hope to reach a negotiation this weekend. Hopefully the kids can start next week. Hadley is NOT going to be a happy girl. She has been waiting to start school since the day we moved here. =)

Luckily we did get in a meeting at the school about Hadley's placement before the strike. Hadley and Keegan will, once again, be at different schools. Our "home" school just doesn't offer a suitable program for Had. Luckily the school that does is still only about 6 miles away. Hadley and I were able to go over and see the room and meet the teacher. I'm pleased with the placement. It's a very similar program to her placement last year that she really thrived in. =) It's a K/1st/2nd split class so she'll be in the same room next year which is REALLY nice. =)

Keegan's school is only a mile and a half away. He is an afternoon Kindergartner. I'm a little leery about him going from a full day pre-K that was really more like Kindergarten to a half day Kindergarten with curriculum he's already learned. We'll see how it pans out. Kindergarten here is only 3 hours long...it is so weird to me. Anyhow...Keegan was supposed to have an evaluation tomorrow afternoon...but now the teachers are on strike and we'll have to reschedule.

Brandon will probably be home before I update again. They were delayed after an accident on board. Everyone was fine...but it was a VERY real reminder of the dangers that surround them every day. They wound up needing to make an unexpected port call for repairs. But all is well now.
Please keep the crew in your prayers...they could use all your positive thoughts for safe travels.

I'll sign off for now. I'll update with First day of school pics (whenever that may be).

MRI on 9/12

Angela

Wednesday, August 15, 2007 4:35pm

Holy Cow, has it seriously been 10 days since my last update? Sheesh.

Hadley is doing great. Her biggest complaint at the moment is a mosquito bite she scratched until it bled. LOL! She calls it her 'red owie'. She's still having to stop and take a few rests throughout the day...but not really napping (sleeping) as much as a few weeks ago. =) She is having a lot of absent seizures...so I really need to get busy finding a neurologist for her. Seriously, there must be a countrywide shortage of peds neurologists or something. Urgh. Other than that things seem to be status quo...which I am working really hard to take at face value and not worry about the 'unseen'. Our girl sure is a trooper. =)

The rest of us are doing pretty good too. We got to go to Danica's first birthday party on Saturday and on Sunday we met GG and Papa, Grammy and Pop Pop and Brandon (uncle, not dad), Hannah and Macy in Leavenworth. We had fun. =) The kids picked out crazy hats...I'll have to post pics...later. =)

Brandon (daddy) is going to be meeting the ship for the rest of the patrol. He'll only be gone a week. He's glad to be getting back to his job. He really felt bad about leaving the ship during a patrol and leaving his shipmates to pick up the slack. He's just cool like that. =)

Just over 2 weeks until school starts...then Hadley's 7th birthday is right around the corner. She has requested a "Baker Lady" party. "Baker Lady" is Hadley's own creation. That's what she calls herself when she puts on her chef hat and apron and plays restaurant or kitchen. So, on September 29th we're having a "Baker Lady" party. =) It should be a lot of fun.

Well, I need to figure out dinner. Thank you for stopping by and continuing to pray for our girl. Next MRI is less than a month away now--9/12!!!

With Love and HOPE,
Angela

Sunday, August 5, 2007 9:15pm

I can't believe it's been a week and a half since my last update. Time flies...

It's been a busy week...

First, Daddy got the promotion we've been waiting for. Congrats to daddy!!! =) We're all so proud of him. As hard as it is being the mama and devoting so much time and energy to keeping this family going...Daddy's job here at home is quite large...and then he has to put in 200t work as well. He's got a lot on his shoulders and we don't thank him often enough. Thank you Brandon, for all you do...and for taking such good care of us. The kids and I are VERY blessed that I am able to stay home to be with them...thank you for always taking care of us!

Hadley's endocrine doc called. Her blood work came back looking more normal than we were expecting. Some of her adrenal hormones were pretty high...which she has a history of, and would explain some of her symptoms. But, her thyroid labs looked good. Her bone age is no longer advancing abnormaly...so now she's down to only 1 year advanced. =) Cortisol was good etc. What a relief! I was NOT looking forward to some of the treatments we were expecting to have to start. These issues will always loom...the brain is mysterious...but, for now things are good.

Nothing else from the opthamologist yet. The doctor that did the video brain wave testing did say that it at least looked like her eyes are seeing about the same (which is consistent with what the doc who did the vision test said). This is good, well better than having two eyes with poor vision that are seeing differently, I guess. =) The doctor who did the video test also did give us a little more hope for vision help. He said that SOME "patterns" on the video testing can be helped by glasses. They don't always help but, they have had cases that they have seen an improvement. That is great news...we're hoping that Had's testing shows one of those patterns that can be helped. =)

We live close to a cousin of mine now. We haven't been able to see each other for several years...and now that we're both married and have kiddos (well, her seecond is due any day now) we live about 15 minutes from each other. =) YAY! Her little boy turned 2 this week and we went to his party on Friday night. The kids had a blast! They all did really well. There are days that Hadley just does so well that I am amazed by her...this was one of those days. There is deffinitely a 'gap' between her and kids her age and even a year or two younger...but she continues to grow and mature and close that gap. She is finally starting to pick up on more 'casual/social' conversation. She takes a bit to respond but she seems to be comprehending more and more 'spontaneous' conversation. Typicaly when talking to Hadley you have to use phrases that she is familiar with. For instance instead of asking/saying "You're a big girl. I'll bet you're 6" you'd have to say "How old are you?". She's familiar with the second phrase and has been taught the response. Does that make sense? Now I'm seeing more and more people using phrases that she's not neccesarily familiar with and her responding appropriately...or at least attempting to. I think the more people she's 'exposed to' the better. She'll pick up more and more speech and receptive language as she is exposed to it. I'm so proud of her. =)

Of cousre with this cognitive growth comes emotional growth...this girl is trying SO hard to be a teenager. Her attitude is insane. I swear the girl sighs and rolls her eyes and talks back ALL day long. I think she stays up all night practicing or something. LOL! I've heard reports of other 6/7 year olds behaving the same way...so I guess we're on track. LOL! Anyone have any advice on bringing the hammer down and putting an end to this NOW? =)

Alrighty...well...this week ended out with our spending all weekend working on the new swing set. It took a lot of time and patience...but, Brandon and I were able to get it together without involving a divorce lawyer. =) So, I guess we're doing pretty good. I guess if it weren't for these test we'd never know how strong our marriage is. =) Here is the photo evidence:


Well, I'd better run. This should be a slow week. I have a doctor's appt tomorrow morning. Yes, I know...I have a doctor's appointment...for ME. Weird huh?

My friend Angela (morgan's mama- www.caringbrridge.org/ca/morganfaith ) turns the big 3-0 on Wednesday...yes, Angela, you're welcome! =) LOL! So, feel free and drop by to wish her a happy day!

Have a great week ya'll.
Thank you for stopping in and especially for praying for our girl!

With Love and HOPE,
Angela

Wednesday, July 25, 2007 3:30 pm

Hello,

Today was Hadley's opthomalogy appointment. It was a long appt (just over 2 hours) and she did AWESOME. I am always amazed at how far Hadley's language skills (both receptive and expressive) and knowledge have come. She did an awesome job following directions and identifying letters etc. I was really blown away...I can't really explain why it was such a happy thing for me watching my child complete an in depth vision test...but, just seeing her comply seemed miraculous to me. =)

Unfortunately her vision has been pretty greatly impacted. And the extremely frustrating thing is that convetional treatments (glasses etc) will likely not work to help correct her problems and give her eyes a break. Her vision problems are caused by optic nerve damage (again...caused by the tumor) rather than structural issues. Her eyes themselves are very healthy...her optic nerves are pale and not functioning properly. Hadley's main isssues at this point are Far Sightedness (problems seeing things up close), and that her left eye takes a little bit longer to focus than her right, and a general nystagmus ('wobbly eyes'...still!). Her vision is 20/50. I had to look all of this up as this is a whole new set of issues for us. The visual accuity numbers basicaly mean that if Hadley is looking at something from a 20ft distance she will see it similarly to what a person with healthy vision will see from 50 ft. Here is the wikipedia deffinition I found:

"A visual acuity of 20/20 is frequently described as meaning that a person can see detail from 20 feet away the same as a person with normal eyesight would see from 20 feet. If a person has a visual acuity of 20/40, he is said to see detail from 20 feet away the same as a person with normal eyesight would see it from 40 feet away. It is possible to have vision superior to 20/20: the maximum acuity of the human eye without visual aids (such as binoculars) is generally thought to be around 20/10 (6/3). Recent developments in optometry have resulted in corrective lenses conferring upon the wearer a vision of up to 20/10. Some birds, such as hawks, are believed to have an acuity of around 20/2; in this respect, their vision is much better than human eyesight."

Obviously Hadley has been 'making do' this far...so we have no reason to believe that will change. It just hurts to know that this could be what's causing her headaches/diziness/vomitting and there's really not much we can do about it. Which is starting to feel like the story of our parenting journey where Hadley is concerned.

Our opthamologist, who really liked, has suggested that we try out some cheap reading glasses from the drugstore or wherever and see if they help. She doesn't think that glasses will help much so she just really doesn't want us goingthrough the whole procces of and spending a bunch of money on glasses that likely won't do much. Had's prescription would be a +3...but she said we could try a +2 because kids usually compensate better. I hope it helps. It just hurts to see her eyes get so tired and watch them deviate and her get frustrated and cover either one or both eyes...get dizzy etc. Not to mention that it's just kind of scarey when her eyes seperate.

So, tomorrow is Endocrinology at 10:45...and then Opthomalogy wanted us to come back so had could do a VEG...which from what they told us sounds like an EEG (with the electrodes on her scalp) and a vision test. Apparently this will help them see changes faster...and will also help us see cahnges in the tumor faster,,,sometimes even faster and more reliably than an MRI. Who'da thunk?

So...another long day tomorrow. Brandon has to work in the morning and then will meet us there for the VEG. There is a sibling playroom where the boys can go play during endocrine...and then we'll eat lunch and Brandon will be there by our appt 1pm...hopefully. Ha ha. =)

I'll update tomorrow if I find out anything else.

Thanks for stopping by!

With Love and Hope,
Angela

Friday, July 20, 2007 8pm

Wow...

I'm tellin ya...this summer is just FLYING by. We finally have internet...woot woot!

So, Hadley's MRI. We had to wait for the final verdict until tumor board on Wednesday. Hadley has, in true Hadley form, stumped our team once again. The tumor appears to be growing...slowly...a little 'faster' between the last two MRI's when the radiologists measured them...but nothing that was totally obvious to the untrained eye. The initial verdict was definite but slow growth. Which in Hadley's history and apparently what they've seen with this type of tumor is not what usually happens in a "true" relapse. In both Ha'd history and what has been seen with growing gangliogliomas...they tend to just sit dormant or grow quite rapidly. The theory 'on the table' is that because Hadley was on an antiangiogenic drug (which works by cutting off the blood supply to the tumor) the tumor is only ENHANCING differently on the scan and not actually growing. The short explanation of why this would happen is this: there is a dye (gadolinium) that is injected into the bloodstream via IV. The dye causes the tumor to enhace or 'glow' white on an MRI. If the bloodstream is interrupted by the chemotherapy the dye will also be interrupted. Does that make sense?

So...the long and short is that we don't really know what is going on. Could be a relapse...could be that the tumor is enhancing differently now that she's off chemo...could be...well who knows. Cancer care is a long journey of educated guesses, hope, prayer, and more educated guesses. So...we scan again on September 12th. Another MRI in just 6 1/2 weeks. At least we're no on chemo...at least it's not growing quickly...at least we're not being rushed into surgery or impossible treatment option choices. These are all blessings...and we'll take 'em.

Hadley is feeling well. She can't wait for school to start. She asks to go to school every day...several times a day. For the most part she's doing well...just random symptoms pop up here and there. She has a few appointments next week; opthamology on Wednesday and endocrinology on Thursday. Fun times.

It's been raining here for a few days (and been incredibly humid) and the kids are getting quite restless being inside all day. But I'll tell ya...this house is the biggest house we've lived in so far...and the extra space really does make a BIG difference. I really do love it here.

Brandon is still here working on land. The Coast Guard has been incredibly supportive and accommodating...we are so thankful.

Hopefully I'll be better about updating now. =) Thank you for continuing to check in...and epsecially for continuing to pray for our girl...and our family. Take good care and have a safe end of summer.

Angela

PS I'll try and get pics uploaded and posted this week. =) The kids all have their summer skin on...=)

Tuesday, July 10, 2007

Hi all,

I'm so osorry for the lapse in entires. Things have been hectic and great and NORMAL. =) We've really enjoyed our chemo free summer so far.

We had an amazing group of about 10 Coasties (Coastguardsmen/women) show up to help us move. We had a a huge garage sized storage unit (we had PACKED a 26' truck) and they met us there helped us load the trucks followed us about 8 miles to our home and unloaded the truck...as if that's not enough they also put together all of our beds. ANd, let me tell you the boys bunk bed is no small chore. LOL! All of this was done in under THREE hours. Yes THREE hours. Craziness huh.

THe kids spent a week out at Gramma and Grampa Foxes in Idaho. They swam, went to the zoo, went and saw shrek 3...they just had an excellent time. I think Hadley was sort of tuckered out toward the end...so she was ready to come home. But I think the boys would have stayed all summer if I'd let them. They had a blast...and it was nice (I'll admit) to have a 'break'. I feel refreshed as a mama and we've had very few meltdowns (by either the kids or myself) since they returned a week ago. LOL!

We LOVE our new home and neighborhood. Mt Rainier is breathtaking. It surprises me everytime I see it...it's just so amazing. The kids love their yard...and they don't know it yet but Gramma and Grampa are buying them a swingset. How fun huh? But don't worry...they're totally not spoiled...right. LOL!

Well, our home is still internet free. I won't lie...it's actually been pretty nice. Our library is just down the street and I've been here so often anyway that I just check in when I'm here. Don't fret though...we'll get it hooked up, eventually. LOL! I can't go too much longer getting so much done and neglecting my laptop I love so much. =)

Hadley's MRI is on Friday...another Friday the 13th scan. OY VEY! Peace and Results...that's been our mantra for the past year or so and I can't really get my brain to 'deal' with any of this right now. I have decided that to cope right nowI need to have my head planted firmly in the sand and enjoy life...=) Then when it's time to arm up for battle I'll be ready. So, please keep us in your prayers. Please pray for Hadley's saftety through the scan...and of course for the results...we're praying for a miracle....a big one.

With Love and HOPE,
Angela

Thursday, June 21, 2007 1:50 PM

Hi all. Just a SUPER speedy update. We're on our way out of Grammy's and back to the Seattle area to begin moving into our new home.

Hadley is doing ok. She has been sleeping a LOT. She seems to be doing ok when she is awake as long as she can dictate when she rests and how much she does while awake. She is tiring easily...and did not tolerate the 90 degree weather at Grammy's very well. =( When she gets tired her eyes are looking worse and worse...she's even been covering her right eye when it gets bad so that she can see out of the left (smart little monkey). *sigh*. She is eating constantly...we're even getting her to try new things she is so hungry. She's not on steroids or anything...I just can't figure this out. It is crazy how having an abnormal brain can change litteraly every function of your body. Insane.

She is still happy most of the time. She gets in a mood when she's not feeling well...but we still see her sweet little crooked smile the majority of the time she's awake. =)

I'll update when I can. Until then, I guess you can assume that no news is...well, no news. LOL!

Thanks for checking in ya'll.
Angela

Friday, June 8, 2007 5 PM

Where does the time go???

We still don't really have any news. The plan, for now, is to wait. We've played this game before. Wait, see what happens...by then we'll have figured out a plan. URGH! Brandon and I are both a bit uncomfortable with this...and are pondering sending her scans back to California for another point of view.

Honestly, a part of me is really quite content to take the break in treatment we'd been SO looking forward to. I just don't want to spend the summer wondering what's growing in that pretty little head.

So, for now, we'll wait, re-scan (MRI) on July 13th (her original MRI date)...and go from there. It looks like Brandon will be on land at least until that MRI. He'll be going to work on land until the ship returns from patrol. I guess it was just too much for them to worry about wether Brandon's head would really be in his work, and the thought of coordinating trips back and forth to the ship from various ports etc. So, he's 'home' for the time being.

I'm really just trying to keep my mind off this tumor altogether. I know it sounds horrible...I just can't deal right now. We have fought so hard for so long...and I just, I just want to rely on our docs to tell us what to do and do it now. I want to enjoy our summer and let THEM worry about all this crap. I'm gonna try my best to do that. I've sucked at it for the past 3 1/2 years...and I'm ready to get back to living life...not living Hadley's cancer care. If that makes any sense at all. When the time comes I'll be ready to fight again. I just can't right now.

Hadley is feeling good today. Yesterday was a bad day. Lots of seizures, very tired, wobbly eyes and VERY asynetrical face. She asked to go to bed before dinner...and finally wound up going to bed around 6. Poor doll. Today she seems to feel a LOT better.

The boys are doing well. Keegan's last day of school was yesterday. He won an award for being "The Best Friend"--described as "the kid everyone can count on...always smiling etc." I can't even tell you how proud I am of him. He's such an amazing little guy. I've felt so horrible over the past several years. I've felt like i haven't been a very good friend, haven't been as happy and possitive as I should be for my kids...and yet...my sweet boy is picking up the traits that I value so much. He's that kid who will pick the rare good traits and model those out of all the flaws and flubs. He's a sweet boy.

We have TWO readers in our house!!! Hadley and Keegan are both in the early reading stages. I ordered a set of the BOB books from Amazon and started reading them to Had at night a few weeks ago. They are very simple...we point to each word...sound them out...etc. She's picking it up slowly but surely. I have a feeling that if we are diligent she will be reading simpl,e books on her own by the end of the summer. I am SO proud of her. I just can't believe her progress. TRULY miraculous!

Last night Keegan insisted that I read him one of Hadley's BOB books. So I grabbed the first one in the set and opened it up. The first page says "Sam"...I turned the page and Keegan said "Sam" and then pointed to the second word...sounded it out and said "sat". He went on to read the whole book on his own. He hasn't even started Kindergarten yet! Little smarty farty. I am so proud of him. It's deffinitely not as much of a challenge for him to learn...but he does love to learn and does spend time practicing...we are jsut proud of our kiddos!!!

Mr Liam (still just 3) is more determined than ever, now, to write letters and read. He can make an O...and is able to trace his name VERY well. I wouldn't put it past him to be writing by the end of the summer...he won't turn 4 till mid November.

This is all so weird to me because we have never pushed them academically. There were just too many other things going on to worry about it. We just helped them as they asked questions etc. So, I'm glad to seem them all excelling. =)

Please, please be prayerful about Hadley's next MRI as well as the time between now and then (July 13th). She has days where she feels great and looks awesome...and then there are not so good days. I hate those and would like to see as few of those as possible. =) Please pray for our sweet girl's miracle.

Thanks for checking in on us. We move in less than a week. We'll be here and there for a bit while doing so. Our cell numbers stay the same for now so you can reach us on those and I'll be checking my email periodicaly as well.

Love ya'll,
Angela

Tuesday, June 5, 2007 1:44 PM

Hello,

I'm sorry for not updating sooner. To be honest I really didn't know what to saynn (coupled with a dead laptop sittuation). There has been growth...a lot more enhancement...some new spots. This, of course is not good. It's not a worst case scenario...it could be worse...much worse. But, we're extremely dissapointed, to say the least. For now that's really all I know. Hadley's case is going to tumor board on Wednesday. We'll see what they reccomend and move forward from there. *sigh*.

Brandon is home. His command, once again, has been overly gracious and supportive of us and sent him home within hours. He was home by 10 pm Friday. I can't say enough how wonderful they have been to our family since 'we' reported a year ago.

I have replaced the power cable for the laptop...thank goodnes. So, I'll be able to update tomorrow evening with any news.

In the meantime Hadley is feling well. No more vomitting, no more complaints of head owies, doing awesome at school and REALLY enjoying the pool being open. She is tiring faster these days...but when she is feeling energetic che is feeling REALLY energetic. =) She's still got a crooked llittle smile on her face...thank goodness.

I'll try and keep you updated...I have a feeling these next 7 days are going to be tough as weigh our options (we're so grateful to still have options) and make choices for our sweet girl and get prepared to complete our move.

Thank you for all the encouragement and concern...we're hanging in there. We're trying to keep things possitive and light. The boys are old enough to understand a lot of this now...and I really want Keegan to be able to finish the school year without worry. We'll talk to them when we know more about our options etc.

Thanks again for checking in on us and especially for your prayers!

Angela and the Fox Crew

Thursday, May 31, 2007 12:45 PM

**Update** Had's MRI is scheduled for tomorrow morning at 10:30am. We have to be at OHSU at 9am for versed and numbing cream (apparently they don't let the kids doze off with the mask...so we have to do an IV start while she's awake. I've elected to make it as pain free as possible and let her have Versed). Please be praying for us. I have been told that the radilogist will take a look at it and compare it and give me an impression, as well as let me look at it. Then the scans will be sent to Seattle and Hadley's case will go to Tumor Board on Wednesday. At that time they will give us their reccomendation for our next steps. So, we should have an idea of what we're looking at on Friday afternoon...but won't have a reccomendation until Wed/Thurs.

The power cord on my Mac Laptop gave out...so my internet access is limited until I get my hands on a replacement. I'll try and get info relayed though.

Thanks for your support.

Angela

Thursday, May 31, 2007 12:45

**Update** Had's MRI is scheduled for tomorrow morning at 10:30am. We have to be at OHSU at 9am for versed and numbing cream (apparently they don't let the kids doze off with the mask...so we have to do an IV start while she's awake. I've elected to make it as pain free as possible and let her have Versed). Please be praying for us. I have been told that the radilogist will take a look at it and compare it and give me an impression, as well as let me look at it. Then the scans will be sent to Seattle and Hadley's case will go to Tumor Board on Wednesday. At that time they will give us their reccomendation for our next steps. So, we should have an idea of what we're looking at on Friday afternoon...but won't have a reccomendation until Wed/Thurs.

The power cord on my Mac Laptop gave out...so my internet access is limited until I get my hands on a replacement. I'll try and get info relayed though.

Thanks for your support.

Angela

Wednesday, May 30, 2007 11am

**Update** Had's MRI is scheduled for tomorrow morning at 10:30am. We have to be at OHSU at 9am for versed and numbing cream (apparently they don't let the kids doze off with the mask...so we have to do an IV start while she's awake. I've elected to make it as pain free as possible and let her have Versed). Please be praying for us. I have been told that the radilogist will take a look at it and compare it and give me an impression, as well as let me look at it. Then the scans will be sent to Seattle and Hadley's case will go to Tumor Board on Wednesday. At that time they will give us their reccomendation for our next steps. So, we should have an idea of what we're looking at on Friday afternoon...but won't have a reccomendation until Wed/Thurs.

The power cord on my Mac Laptop gave out...so my internet access is limited until I get my hands on a replacement. I'll try and get info relayed though.

Thanks for your support.

Angela


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





Hello Friends,

I have been contemplating wether to post this or not. I decided to go ahead and do so.

As most of you know Hadley's next scan is scheduled for July 13th. Because of increasing worrisome symptoms and our team's past experience with this drug...and also Hadley's history of rapid growth...we are moving the scan up. Her team wants her scanned this week. OHSU is working on getting her on the schedule there so that we dont' have to go up to Seattle. I am told that she will be scanned on or before Friday.

We are taking deep breaths...hoping for the best...preparing ourselves for the worst. Brandon is, as most of you know, deployed right now. He is reachable by cell phone until Friday morning...and then it will be back to sporadic emails and emergency messages through the Red Cross. *sigh* So, we are forced tohave some of the hard to have discussions before he is unreachable again.


I don't think I need to tell you how big this burden is. I am really hoping my gut is wrong...but, I have this terrible feeling that we've reached the end of our reprieve. I sure hope I am wrong...I always find it when I need it, but I honestly don't know where the strength to get through this is going to come from this time.

Please pray for us this week as we dread this scan and the news and choices that will come with it. Please pray for Brandon as he is feeling even more helpless than I am...being so far away...and feeling so 'stuck'. Please pray for our girl...pray for her miracle...pray that she continues to smile and love her life. Pray for our boys as they deal with a stressed out mama and the fear looming around our home right now.

I'll update with the scan date and time as soon as I hear back from the hospitals.

Thanks Ya'll...
Angela

Thursday, May 24, 2007 6:02 PM

As a military wife, and also cousin of a soldier returning home from war, I couldn't let this 'holiday' slip by with out reminding friends and family what it is all about. Most of us spend this weekend with friends and family celebrating the summer just around the bend. I fully advocate spending time with those you love, having fun, and enjoying life to the fullest. Let's not, however, forget to take time to remember those who have been injured and those who have given their lives in service to our country to protect our basic freedoms.

I found a site full of information on putting respect and remembrance back in Memorial Day. Take a moment to check it out. And if nothing else please remember to take a moment of silence at 3pm on Monday for ALL our fallen troops.

Have a safe weekend ya'll...

Angela




http://www.usmemorialday.org/observe.htm

The "Memorial" in Memorial Day has been ignored by too many of us who are beneficiaries of those who have given the ultimate sacrifice. Often we do not observe the day as it should be, a day where we actively remember our ancestors, our family members, our loved ones, our neighbors, and our friends who have given the ultimate sacrifice:
by visiting cemeteries and placing flags or flowers on the graves of our fallen heroes.

by visiting memorials.

by flying the U.S. Flag at half-staff until noon.

by flying the 'POW/MIA Flag' as well (Section 1082 of the 1998 Defense Authorization Act).

by participating in a "National Moment of Remembrance": at 3 p.m. to pause and think upon the true meaning of the day, and for Taps to be played.

by renewing a pledge to aid the widows, widowers, and orphans of our falled dead, and to aid the disabled veterans.
Also, please consider adding your voice in support of the efforts to restore the traditional day of observance of Memorial Day back to May 30th (instead of "the last Monday in May"). This would help greatly to return the solemn meaning back to the day, and to help return minds and hearts to think upon the ultimate sacrifices made by those in service to our country. Just one day out of the year to honor our loved ones, our ancestors, our friends who died in conflicts and wars -- not to honor war, but those that died in those conflicts and wars.

I receive many emails from people expressing their thanks for those who have served and gave the ultimate sacrifice for this country. The following, received in 1999 and used with the author's permission, sums up all the emails I have received very elegantly, and is true to the original spirit and meaning of Memorial Day.


"This weekend I am going to do something different. I am going to buy some carnations each day and go to one of the nearby cemetaries and walk through the sections for soldiers. When I find a grave that has no flowers, I'll leave one and say a prayer for the family of that person, who for some reason could not bring their soldier flowers. I will pray for our country and all who serve or have served. For their families, who also serve by losing precious days, weeks and months spent with their loved ones who are off serving, preserving peace and the freedom we have in this country. I'll pray for the families who paid the ultimate price, who's loved ones died, or were taken captive and never returned. I'll pray for anyone who may still be held in captivity and thinks perhaps they are forgotten. I do NOT forget.
I'll say a prayer for every person on the Internet who takes a moment from their time to come to sites like yours and be reminded of what this holiday really means. And I'll say a prayer of thanks and ask God's richest blessings on you.

Thank you again.... and God bless!
Sylvia Mohr"

No, Thank you and God Bless you, Sylvia. May more follow your example.
In fact, wonderful people in other nations sometimes show more of the true spirit and mission of the U.S. Memorial Day than we do here. For example, a 2001 US Memorial Day Guestbook entry from a citizen of the Netherlands states:

"Hi,
In 1999 I laid flowers at the grave of a young U.S. fighter pilot who was KIA in my village in 1945. In the Netherlands I know of schools 'adopting' graves of Allied servicemen, keeping those graves in excellent condition ! Does anybody know of adopting graves in the U.S. by schools ?

Sincerely,
Paul Patist
Castricum, The Netherlands - Tue May 15 04:50:29 2001"

More schools in the U.S. could follow the lead of the Netherland schools. Let us take a few moments this Memorial Day to reflect on the meaning of the day, to observe the day and be mindful of the sacrifices of others before we go and enjoy the freedoms they bought for us.


Sources and Related Links:

7-Eleven®, AT&T Join Forces with White House Commission on the National Moment of Remembrance:
Alliance Launches Calling America s Heroes National Memorial Day Campaign --
[www.usmemorialday.org/calling.htm]
24 Notes That Tap Deep Emotions
[www.west-point.org/taps/Taps.html]
The American Legion's Flag Education and Etiquette Page
No longer online. Address was (in 2000)[www.legion.org/flagcode.htm]
Flag Rules and Regulations www.ushistory.org/betsy/flagetiq.html
General Logan's General Order 11
[www.usmemorialday.org/order11.html]
Growing up in the wake of World War II
Childhood recollection by Professor Benoit Roisin [©, 2000]
[www.usmemorialday.org/roisin.htm]
Memorandum on the National Moment of Remembrance
[www.usmemorialday.org/speeches/president/may0200.txt]
No Greater Love
[www.ngl.org]
The Prairie Ridge 'POW/MIA Flag History' page
[www.theshop.net/patriot/]
S 189 and H.R. 1474, bills to restore the traditional day of observance of Memorial Day.
[www.usmemorialday.org/act.html]
S. Con. Res. 100, resolution for a National Moment of Rememberance.
[www.usmemorialday.org/resolution.html]
Taps Information
[www.usmemorialday.org/taps.html]
The US Flag Code (36 US Code 10)
[suvcw.org/flag.htm]


© 1994 - 2004 David Merchant
Updated 27 May 2004

Sunday, May 20, 2007 11am

Hadley had her very first school program this week. =) She did great!!! I'll have to admit I was more than a little nervous. =) But she did AWESOME...and had so much fun. I'm so proud of her. I have several videos but have only gotten 2 uploaded to post online so far. So here they are. The program was called "Gettin' Down with Mama Goose". It was sort of a rock spin on nursery rhymes. =) FUN!

Ok...Here they are. I'll take the music player off the page for now so you don't have to mess with it.

Sunday, May 13, 2007 9pm

Hey ya'll,

Happy Mother's day. I just barely got here in time huh. =)

Sorry for the delay. For whatever reason I just don't have the desire to come here and update all that often anymore. I'm not entirely sure what it is. I think the two biggest factors are that Hadley is doing fairly well in the fight for her life. Her battles right now are quality of life battles. And while those are BIG to us...to many they probably don't seem all that significant. Ya know. I don't want to sound like I'm whining so instead I just don't really say much. The other is that sometimes these 'reprieves' are the times when 'we' (the mom's of life threatningly sick) kids tend to sort of allow ourselves to breathe and fall apart. We don't have the time or energy to do so when things aren't going well...so, we wait until things are...then people stare at us and wonder how we held it together when things were so grim and are bluvvering idiots now. A friend gave me a bracelete for christmas. It didn't seem like a big deal to her...and I just started crying. She really had no idea what to do but hug me. She kept asking me what was wrong and why I was crying. I had no idea at the time. But, in retrospect, Hadley's tumor was stable. We'd made it to one year stable...I could breathe...feel...hurt...deal with everything I'd bottled up in order to get through each day. Anyway, I barely understand this, so I don't realy expect other people to...so I usually just keep it to myself...or more often just make Brandon deal with me. =) Poor guy.

Now that I've already written a 'novel' I'll go ahead and update. =)

The ship left this week. Brandon's gone for 3 months. He'll be back in mid August. Thankfully it's almost summer and we'll have some distraction with traveling to visit family and finishing the move etc. *sigh* I hate to sound corny...but what the heck...I miss him already. I miss having him around...his company, his horrible jokes, his hugs etc. I miss him. It's hard work parenting alone.

Hadley's doing well. She continues to have problems with her leg/foot etc. I still haven't called and made an appointment. I'm really dreading going up to the hospital and I really hoped it would improve after she started wearing the AFO again. *sigh*. Other than that she's doing pretty well. She's doing well in school and we have instructions on what to work on over the summer etc. =)

Keegan is doing great. His rash FINALY seems to be almost completely cleared up. YAY! He's been really emotional since the ship left. But it's been a busy week. He also had a weird bug on Monday. He seemed fine when he woke up Tuesday but we kept him home just in case. He ran a low grade fever and just slept constantly. He didn't want to eat or drink so he got dehydrated and dry heaved for a bit. But that was it. Really odd. Other than that he's doing well. He loves school work and socializing. He's very excited to move and start Kindergarten etc.

Liam is doing well. He seems to have made it through winter with only one or two bad respiratory/ear infections. No steroids or nebulizers this winter. WOO HOO!!!! That's a first for him!!! Yay. He is doing really well during the day...a little clingier than usual (if you can even imagine that) since the ship left but nothing big. Night time however, is a whole different talk show. He is having some serious night terror issues. The one last night lasted about 45 minutes. No joke. My mom was there to wittness it. He screamed blody murder...sometimes scared, sometimes mad...one minute he was trying to cling to me for dear life...thenext he's pushing me away, swinging at me and trying to bite me. There's nothing I can do to wake him up or help calm him. I carried him outside to the car buckled him in his seat and drove for about 35 minutes. Then when it's over he goes from screaming at the top of his lungs to snoring like someone flipped a light switch. He's on the brink of hysteria one second and the next he's sleeping soundly. I have never seen anything like it. It scares the heck outta me though. So, because I've been 'that' mom who gets brushed off and frustrated by it...I'm going to video tape it and let the pediatrician see it for herself. =) Oy.

So, that's our life in a nutshell. We're living like refuges in an apartment with no furniture etc. It's really pretty funny. Only a military wife would hang with this and not really think it was nuts until someone implied it was. Ya just do what you gotta do. Git-R-Done, if you will. Ha ha. A couple more weeks of school and then we'll be on the road...again. Our house is officialy 'ours' on the 21st. Our lease here is up on the 15th so we have almost a week of hang time...but we'll figure it out. =)

Well. Please continue to pray for Stevie's family. Just pray for them. They are good people and they shouldn't be having to struggle through this. We miss you Stevie.

G'night,
Angela

Saturday, May 5, 2007 8:30am

Hello,

Sorry for the delay in journaling. Stevie's funeral was last Sunday...and I was just really not in the mood to update here. I try to keep things upbeat here...I often fail...but I try. I have not been so upbeat. How do I? That was a rhetorical question...as, over the past three years I've gotten plenty of advice on that. I've decided that there are just times when you're not going to be possitive or upbeat or even hopeful. While I do still have HOPE...and plenty of it...like our dreams, ithas changed with time. I think people begin to worry when I start pointing out all thesimilarities between Stevie and Hadley. There are many. This was always an odd little honor.


So, yeah, I'm hanging in...living...getting things done...but, my heart is broken for this sweet 19 year old girl. She was SO loved...I hope she knew just how much. I know I feel isolated and 'forgoten' at times. People don't want to 'deal' with our reality. I feel like we're a reminder that horrible random things can happen to anyone. I feel supported...yet, friendless. Does that make sense? Probably not...I know that people care...yet, they don't want to get too close. Ya know? I hope that Stevie knew that she was adored. I'm sure she did. =) I just know how I feel...and I'm not even the one with a brain tumor...and I'm an adult...not a 13-19 yr old.

I'm sad...that's all there is to it. And I'm ok with being sad. I need to let myself 'do this'.



Hadley is doing well...she continues to have problems with her ankle and foot. I need to make an appointment for her. We finally found her AFO (leg brace) so she's back in that...and hopefully that'll help. I just cant explainhow hard it is to realize that this is our new 'good' or 'normal'...in some part of my brainI secretly held out hope that when Hadley was 'finished' with treatment a lot of these side effect typoe issues would get better or even go away. It's just not going to happen. This tumor has really left it's mark...and it's there to stay. That is hard to adjust to.

Speaking of leaving lasting marks. I got another tattoo. I am mentioning it here because Hadley played a huge role in it. I had "HOPE" tatoo'd on the top of my left foot in Hadley's handwriting. I'm pretty proud of it...and HER!!!
I just had it done yesterday so it's still kind of irritatied etc but, here's a pic anyway:

Hadley participated in a Special Olympics Field Day yesterday. She had a BLAST...and won a few ribbons that she's VERY proud of. Here's a picture of that. I took it with my camera phone...so, I'll appologize for the quality...=(


Hadley is on a weekend roadtrip with Grammy and Pop Pop. The guys and I are packing the house (still). We'll get the packing done today and then take all the furniture apart tomorrow morning. Pick the truck up tomororw afternoon and load it. Then Monday we'll drive up to Spanaway first thing in the morning and unload everything into storage. *sigh* AllIhave to say is that if the ship changes their schedule again...I'm going to lose my mind. =) You all know it's coming...it's just a matter of when. LOL!

Well, I guess no news is good news for now...until next time...

Angela

Monday, April 23, 2007 10:30am

Hi all,
My cousin, Nick Serna, died playing "The Choking Game". PLEASE...go to this site, sign the petition (you can remain anonymous) and help educate children worldwide about the dangers involved. You can read more about Nick at: www.NickSerna.com

Thanks,
Angela Fox
www.HadleyFox.com



Click Here to Sign the Petition

This will only take a minute for you to do: We need signatures! We need MANY signatures. Please, if you are reading this, pass it to your friends asking them to do the same. The sooner the better. Losing someone you love because of lack of information is ... unacceptable. We found out the hard way....
Thank you,
Michele Mansfield Nick Serna's Mom... NickSerna.com
Sarah Pacatte Gabriel Mordecai's mom StillLovingMyGabriel.com

DARE (Drugs and Alcohol resistance education) has made a huge impact on our children and now it is time to ensure they are educated in the dangers of risk behavior. We must ensure that the curriculum for this life saving education be updated with the deadly impact that playing “the choking game” and other asphyxia activities.
We ask that you please sign your name to this petition to have our DARE representatives add Risk Behavior (Deadly Asphyxia Activities) into the current DARE presentations given to our children at Schools around the world. This is not just a North American problem, this is world wide!

Click Here to Sign the Petition


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


I realize this is 'low'...but guys, seriously, my boy (keegan) really wants to participate and I really don't have the time to track down donations with him. If you can help, and choose to do so, THANK YOU.

To donate on-line 'they' require a $25 minimum...if you'd like to donate less than that...that's more than ok too. You can send a check to us (made out directly to "American Heart Association")...just message me for the address. =)

www.kintera.org/faf/r.asp?t=4&i=201298&u=201298-173542708

Thanks yall...and sorry again...I realaize not all of you are people we would normaly ask to help out with this sort of 'deal'...but I'm desperate. =/






As you can see yesterday was Hadley's diagnosis anniversary. I am not in a great 'place' right now with that whole thing...so I'm not going to expand on that.

I'm still in somewhat of a shock over Stevie's death. One minute I feel fine...thenext I am crying agian. I can't imagine the pain Gina, Steve, Aly and Noah are in...how huge that hole is going to be in their family...There are no words so I'll stop there...

Today has already been productive. We've already gotten so much done. My first outing today was to the ER at 7am. Hadley, from the best of our reasoning, fell out of bed and split her chin open on the bin her shoes are in. Luckily they were able to use dermabond instead of stitches. Poor Dolly. She was quite a trooper...the nurse was great and understood that with her history she may do better if she got to participate and know exactly what was going on. So she got to clean her own wound with betadyne first...then the nurse took a turn. Hadley even got a betadyne "nawstache" (mustache) which she thought was cooler than cooler. =) Here are some pics (I took them with my phone so they're not the best quality...but you get the idea) it was fairly gnarly.

Friday, April 20, 2007 9:30am

I really don't know what to say. Cousin Stevie passed away yesterday morning. She fought long and hard against a very stubborn brain tumor. I can't even begin to express what is going on in my heart right now. Please pray for all of us especially her immediate family...Parents: Steve and Gina...and siblings: Aly and Noah. We love you guys...and we love you Stevie.

Wednesday, April 18, 2007 2:05PM

Hello,

I really did mean to come back and update over the weekend. I just don't know where time goes anymore. =)

Yesterday was my birthday. I have this feeling I'm going to spend an entire year giving people my age and then defending the fact that I really am 29. It seems that most women 'quit aging' at 29. LOL! So, when I say I'm 29 I'm sure people are going tol be saying'sure, whatever lady'. I don't mind getting older...it's all those goals and 'to do' lists that bother me. Ha ha.

Hadley is doing very well. Her blood counts still weren't quite back to normal...but they were in a good range...so we're finished with weekly labs etc. We don't have a single doctor's visit/clinic appt/lab draw/procedure/medication etc until mid JULY! Holy cow...so...I can tell you what we DIDN'T do on my birthday yesterday (our normal lab day)...go to the lab and get poked!!! YAY! =) Please continue to pray for Hadley. We need these tumors to stay stable for as long as they possibly can. The rest of her life would be nice! =)

I wanted to take just a second to explain a few terms and the differences between them. This is probably a much bigger deal to me than to any of you...lol...but I wanted to share for anyone who WAS interested. =)

Stable=The same...no disease progression or regression. Or in Hadley's case growth/decrease.

Clean=Usually means NO evidence of disease.

Because Hadley's tumors are still present and clearly visible on an MRI she is obviously not considered cured. Nor is she finished with treatment. The easiest way to describe it is that she is being monitired. Like diabetics monitor the blood sugar levels etc. Their disease may be in control (for the time being) but it will never be gone. Their treatment will likely have to change over time as their disease/body/age/health change. Hadley is in maintenance. We'll take our reprieve and enjoy it for as long as it lasts (hopefully for quite some time)...but this journey is far from over. I guess I say all this to say...please keep praying for our girl!!!

We're preparing for our move. The Coast Guard's schedule cahnges like the wind and a one month deployment in early May turned into a May-August deployment. So, this whole moving adventure just got a lot more 'adventurous'. It's a good thing Brandon chose a low maintenace wife with a 'strong back'. Ha ha...Just when I thought I was about as independent as they come...the universe goes and throws another curve ball at us. =)

Hadley is still loving school. Her boyfriend is apparently still Tavis. =) LOL! Her class recently finished up it's bowling trips andd have started back to swimming trips. Hadley loves field trips and seems to love every sport she tries. =) I'm so proud of her...and can't wait till she's 8 and can start special olympics. I think she's gonna have a blast. I'm sure that Honey would have loved to be here for that. I think she would have been ecstatic to have another special olympian in the family. =)

The boys are doing well, as always! Keegan decided to break out in a funky rash during spring break. It looked like Ringworm for the first week-ish. Then it spread all over his trunk/arms etc. I took him in b/c the ringworm stuff clearly wasn't working and I had NEVER seen anything like this rash before (even in all my years of preschool/daycare/nannying and mommying. LOL! Anyhoo...it's this funky rash...doctors suspect it is a virus...but one has never been identified. There is no treatment. It is not contagious (one argument against it being viral). The worst part is usually it's appearance. It's called Pityriasis Rosea. It is odd. It seems to be here for a while as I have seen no indication that it plans on clearing up any time soon. He's had it for almost a month now and nobody else has gotten it...so I'ma ssuming that it really isn't contagious. LOL! I swear my kids don;'t do ANYTHING typical. =)

Well, I'd better run. We have to go get Keegan from school and then I hav4 to get back to work on organizing and packing this apartment. It'll be SO nice to be in a bigger house. =)

Have a great week...
No news is good news.

Angela

Friday, April 13, 2007 5:15PM

STABLE again!!!

Thank you for the prayers! I'm exhausted...we left this morning at 5am. Oy...

Have a great weekend!

Angela

Wednesday, April 4, 2007 1am

Hey there. It's 1am. Some days I swear I have OCD. I decided to start downloading pics a while back...and now I can barely hold my eyes open. BUT, I'm GOING to finish this darn it all. =)

We had a fun trip to Idaho. It was SOOOOOOO nice to relax. But, really the nicest part was having 'daddy' all to ourselves for so long. We haven't seen him for that long of a stretch for nearly a year. It's hard to believe we've been here for almost 10 1/2 mos now. I guess time flies when your head is spinning. =)

The pics below are pretty self explanatory. Hadley and I had a Mama/Daughter 'beauty and appointment' (what Had called it) with Auntie Hayley. Hadley had her hair cut and a manicure. She was such a big girl. =) We went bowling (hadley's new fave thing) and all the kids loved it. We played outside. And, of course, no trip to Idaho is complete without a good ol weekend tumbleweed burnin'. =) The boys were THRILLED with this 'game'...We'll see how thrilled they are when they're old enough to wield a pitch fork and gather those tumbleweeds...=).

Alright folks. I NEED to sleep. Please be praying for Hadley's next MRI. Yes, it's coming up again already. April 13th. Yup, Friday the 13th. Hopefully that isn't a sign!

We're heading out of town again this weekend. We're going to Grammy and Pop Pop's for Easter! =) Will update again after we return home. Until then...no news is good news! =)

Angela

Thursday, March 22, 2007 9:30pm

Monday, March 12, 2007 10am

3/15/07

I'm an AUNTIE!!! =) My Brother Clay's baby was born this afternoon. She's a DOLL! The kids have their first cousin. =)

Monday, March 5, 2007 8pm

Hello Fellow Hadley Fans,

I really apologize for being such a lousy 'journaler'. =) We've been either crazy busy or totally stupidly lazy. Although, we're more likely to be crazy busy. =)

Daddy did make it home safely. Thank Goodness. The ship came in on Tuesday...he was able to come home for a long weekend on Thurs afternoon...and had to go back Sunday evening. It was sooooo nice having him home. The kids were THRILLED to see him. Thrilled doesn't even begin to describe it. They all love their daddy so much...and I love him an awful lot too. It's just so nice to have him home. =)

Hadley is doing well. She's still doing great in school. Plugging along with chemo. Just shy of two weeks left now (I think the ticker may be off by a couple days).

The boys are doing well, as always.

I am good. =) I am still trying to wrap my brain around Hadley's new diagnosis. I felt myself really jump inside when we were at the zoo on Sunday. Some punk teenagers were walking by shoving each other around and generaly giving each other a hard time. One of them yelled something at the other and in the process called him a "retard". Now, I will admit that I have used...well, abused would be a better descriptor...that word for most of my life. Now, it makes me want to shrivel up inside. I have no problem with it being used correctly...it's when someone is trying to hurt someone with a word that has been used to label my baby girl...that is not ok with me. I don't really know how to explain it. Anyhow...I'm a little touchy right now. One of Keegan's friends at school announced to his class, when I was there picking him up, that "Keegan's sister is weird...but we shouldn't say she's stupid". OUCH! I felt so bad for Keegan...so bad for Hadley...and I really just wanted to cry. I realize that most kids get called weird plenty of times in their elementary careers...but ya know...I'm just a little over sensitive right now. *sigh*

As moms we just want to make everything OK...and I'm having a really hard time figuring out how to do that. I mean obviously I can't. And the boys are going to feel whatever they're going to...and I will encourage them to share those feelings with me...and hopefully help them work through them. I just...I just hate for this damned tumor to create MORE havoc in our lives. It dawned on me today that Hadley and Keegan will be at the same school next year. Hadley will be in 1st grade...Keegan in Kinder. I just...I just hope that Keegan does alright...I hope as they get older that their being so close in age and going to the same school is a blessing and not a curse for the boys.

Honestly I just wish I could stop thinking about this. I know I'm borrowing worry. I know it's no good for me. It's just that...we've been so focused on getting Hadley through this that I never really stopped to think about all of this...the 'after'...the 'when the kids grow up' part. And now they are.

Oh well...

So...Not really much else to report. We're just hanging out...plodding along.

I'll update again soon!

Angela

Monday, February 26, 2007 8:44 PM CST

Miss Hadley has spoken. She has been demanding a "girl's song". Not quite sure what that means...but I thought this one 'fit' and it passed her 'inspection'...so I hope you enjoy. I've included the lyrics at the bottom of this journal.

I'm feeling a bit better. I know that I am not to blame for all of Hadley's struggles. I am just so broken hearted. When you are pregnant or holding your newborn...these are not the dreams you have for them. You do not dream of years of chemotherapy, horrendous surgeries, strokes, brain damage, pain...this is just not what I wished for her. Of course not...that would be insane...but more than not dreaming it for them...you never in a million years see this coming. You never even dream that this could happen to your child. It's just not something you get used to or get over. It still breaks my heart every single day.

Thankfully Hadley is an amazing little spirit. Even in the brain damage we were blessed...spared, sort of. In the reading of done I've found that people with damage in the areas of the brain where Hadley's has occurred can either be 'euphoric' or facetious...OR they can be very 'flat' with no emotion etc. even unable to speak entirely. Could you imagine our Hadley like that. Yeah, me neither. So, I will try to remember the next time I'm getting frustrated b/c she's laughing inappropriately and WAY too loud that things could be worse. She could have no laugh at all. I will try to be thankful for my girl who always seems to be happy. I will even work to be thankful for the 'not so happy Hadley'...also refered to as "kitty Hadley"...LOL! Because even a fit of rage is better than no emotion at all. At least in my book anyway.

I have done a lot of reading...and I am more and more convinced with each article and paper I read that we do finally have the correct diagnosis for our bug. I am thankful to our new neuro psych for this. In some odd way...I do feel a little more peaceful at least knowing what caused all of this. Just don't get me started on why she got the tumor in the first place. Oy! =)

Hadley will end chemo in a few weeks...hopefully we can adjust into some sort of 'normalcy'...and enjoy a bit of a break from treatment. I am really looking forward to it. I know her poor little body can sure use it.

So, Hadley seems to be feeling better today. Only a low grade fever...she was up and down all night complaining about her head hurting (even after Tylenol). Then today she started complaining that her pee pee hurt. A few minutes ago she had an accident. I can't remember the last time she had a potty accident. Well, yes, I can. It was over a year ago on Christmas eve...she was throwing up and pee'd. It was so sad. Anyway...I'm thinking now that she may have a UTI. *sigh*.

So, I'm still waiting to hear from Brandon about whether or not he actually gets to come home when the ship pulls in...I have an appt at 9:15...and we'd have to leave no later than 11 to get to the pier to meet the ship. So, I'm gonna have to fit a trip to the hospital in there...or cancel my appt and take her...or try and get to urgent care tonight with all three kids. Oy. Who said cloning was so bad. I could sure use one or two right now. =)

Well, I'd better run. I need to figure out what to do here.

With Love and HOPE,
Angela





Unwritten
Natasha Bedingfield

I am unwritten, can't read my mind, I'm undefined
I'm just beginning, the pen's in my hand, ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your innovations
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Oh, oh, oh

I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inner visions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
The rest is still unwritten
The rest is still unwritten

Oh, yeah, yeah

Friday, February 23, 2007 4:10pm

***Sunday night***

Please say prayers for Miss Hadley! She is one sick little dolly. She was feeling 'off' all day...not eating...tired...not wanting to play etc. Then at dinner time she came in the kitchen complaining that she was tired and said "I'm HHHHHOOOOOTTTT"...I turned around and she was shivering and covered in goose bumps. UGH! She gagged on her tylenol...but took in alittle juice and hasn't really thrown up. But, she was holding her head and crying when she fell asleep on the couch (sitting up) at about 6pm. The sitting up thing is sort of habit...old hydrocephalus days habit. =/ Weird how I sort 'default' to that. I know her hydro is fine...she just had a scan a week ago...but for some reason I just wanna throw up any time she holds her head and even thinks about saying it hurts. Oy....

Anyway, please pray for my girl. We are supposed to be making a VERY important trip to Seattle on TUESDAY. One that involves a certain member of our family that we haven't seen since Jan 1st. So...please...for Had's comfort and my sanity please...pray that our dolly is feeling better...and QUICK!!!

thanks Yall!
****************************








Hello,

This is one of those days that it would be REALLY nice to have my husband home...I can't guarantee that this will be upbeat or pretty or even that most of you will understand it. Just trust that I am ok...I've handled everything I have...I am capable...I know this. Know that Hadley is still the same Hadley she has always been...or at least the same Hadley she was when she woke up this morning. I suppose she's worked too hard to be called 'the same'. =)

Hadley's neuro-psychological evaluation was this morning. I went into it expecting more questions...and few answers. That's usually the case anyway...not so much today.

We finally saw someone who has experience with kid's like Hadley. Hadley is definitely not autistic. No autism. That's right. Although this doc could understand how some docs may mis diagnose this. I did finally find a doctor who shared my deep seeded frustration, disappointment...ok, rage...over children with brain tumors going undiagnosed for extended periods simply b/c doctors don't listen to their parents...and refuse to look at the symptoms for what they are instead of what they "most likely" are. So...I have a comrade. Great. How does that help Hadley. Well, we finally have a better picture of what may be going on in our little princesses brain. So, if she's not autistic then what?!?

Her official diagnosis is a bit hard to swallow. Mental Retardation. Specifically, Environmental Dependency Syndrome and Frontal Lobe Brain Damage or Frontal Lobe syndrome. Fun, huh? So, yes...this F ing tumor is to blame. For all of this...ALL of it. Which leads us to the conclusion that this tumor likely developed in utero or shortly after birth. I've already expressed my feelings of guilt about that here. Everyone I know tells me that it is not my fault that this was ignored, overlooked, assumed to be something it wasn't for so long. Logically, I know this. But, my heart will never hear that. My heart knows that this person was entrusted to me...and I failed. I failed to stand my ground. I failed to protect her. I failed to listen to my gut...mostly our of fear of finding something as scary as what we eventually found...partially because I was unwilling to stand up to doctors who I felt inferior to. I was told I was being paranoid, was inexperienced etc. and I believed it. Hadley deserved more from me. Logically I understand that my heart is being irrational...but my feelings are what they are. I don't know that I will EVER not feel that way. And that is ok. It comes with the territory.

So...what does the future look like for miss H? We don't posses a crystal ball...but the fact that she has made such great strides both academically and developmentally over the past 6 months is very promising. We should know more over the course of the next 2-4 years. Hopefully her brain will continue to develop and she will continue to 'catch up'. Things may never be 'typical'...but, hopefully she will 'recover' somewhat.






I found a few pretty great websites that I'll share with you. I haven't read the first in it's entirety. I'll need to print it out...my eyes can't handle reading it on the screen...LOL. But here is the link: http://www.smithsrisca.demon.co.uk/frontal-lobe-syndrome.html

Here is a quote from the site listed above: Mateer and Williams (1991) have studied the effects of frontal lobe injury in children and recommend the following classroom management guidelines .....

1 - Do Not Offer Options: This is because frontal cases have difficulty recognising and prioritising alternative courses of action. Prepare instead a simple course of action.

2 - Do Not Bargain: This is because frontal cases have difficulty recognising contingent benefit.

3 - Structure and Predictability: These are important aids to memory and the scheduling of effort, so detailed timetables and explicit deadlines should be provided.

4 - Use Memory Books and Organisers: These are important to store modelled and directed good practice as it is established during management.

5 - Use Direct Instruction: Again because frontal cases are generally disorganised and have difficulty abstracting the relative importance of things for themselves, their teachers should state precise final and substage objectives.

6 - Provide Study Skills/Organisational Assistance: Under this heading, it is useful (a) to distribute practice over time, and to follow a shared written plan, and (b) to identify the "main idea" in any new material.

7 - Provide Positive Feedback: Use "constructive timely feedback" to reinforce students' positive self-esteem.

At the same time, clinicians need to guard against doing too much of their patient's thinking for them. For example, Ylvisaker and Feeney (draft 2004 online) have reviewed the literature on paediatric frontal rehabilitation and identify the fundamental problem as one of measuring patients' "self-determination" in a clinician-patient encounter where the clinician is likely to be doing all the determining. They adopt Wehmeyer, Agran, and Hughes' (1998) analysis of self-determination into four components .....

(1) Autonomy: This is Wehmeyer, Agran, and Hughes' first self-determination factor, namely "acting in a way that is free from undue external influence or interference" (p2).

(2) Self-Regulation: This is Wehmeyer, Agran, and Hughes' second self-determination factor, namely "formulating, enacting, and evaluating plans of action, with revisions as necessary" (p2).

(3) Psychological Empowerment: This is Wehmeyer, Agran, and Hughes' third self-determination factor, namely "acting on the belief that one can influence important outcomes in the environment and in life" (p2).

(4) Self-Realisation: This is Wehmeyer, Agran, and Hughes' fourth self-determination factor, namely "using a reasonably accurate knowledge of self (strengths and needs) and acting in a manner that capitalises on this knowledge in a beneficial way" (p2).

Ylvisaker and Feeney also echo Stuss and Benson's (1986) observation that "in the context of standardised assessment, the examiner and testing situation function as prosthetic frontal lobes" (p4). They therefore recommend "a distrust of clinical programs that fragment integrated aspects of human function and decontextualise the treatment" (p4), thus .....

"To be successful with any difficult task, children need to (a) know that it will be difficult (presupposing some awareness of strengths and limitations), (b) set a reasonable goal, (c) formulate (however unconsciously) a plan to achieve the goal, (d) initiate goal-directed action, (e) refrain from actions that interfere with success, (f) attend to and evaluate how well they are doing, and (g) try another plan or strategy if things are not going well, remaining optimistic about the possibility of success. In addition, they need to know that they can control the outcome of their efforts (at least to some degree) and take responsibility for that effort (ie. internal locus of control, Rotter, 1966)." (Ylvisaker and Feeney, 2003/2004 online, p4.)








And here is another site that is pretty cool...It explores the whole brain. Very neat. =)
http://www.pbs.org/wnet/brain/history/index.html



Alright well... From what I've read we finally have a diagnosis that seems to fit Hadley. It just really sucks that the words Retardation and Brain Damage are involved. I know that sounds silly...but somehow...they just sound so 'severe'. I know it doesn't make sense that my heart would break all over again...but, it has. I'm a mom...my heart hasn't made any sense since motherhood began for me.

Alright...time to figure out dinner.

Thanks for reading this far...I know it's a doozy. I'm sorry for my attitude...but, it's all a part of this journey...the joy the triumph and the heart ache. *sigh*

With Love and HOPE,
The Mama

Friday, February 16, 2007 8pm

We're still stable...!!!


It still looking like it's shrinking...the change is subtle from one MRI to the next...but, if you go back to last June's MRI and compare it to todays the change is definitely noticeable. I am relieved and thankful...those are the biggest emotions anyway...I don't have the energy or desire to explore or share the 'background noise'. =) Another day...anotehr journal.

For now we are thankful...and exhausted. Thirteen hours from the time we walked out the door this morning we walked back in it...I am dragging...the kids, not so much. Serenity now! =)

Thank you for the prayers...thank you really isn't enough...but thank you all the same.

With Love and HOPE,
Angela

Saturday, February 10, 2007 noon

Hello,

Well, we have less than one week until MRI. I am fairly calm about this...but, there is sort of a storm brewing beneath the surface. I can't really explain it...I expect the MRI to be good...but the feeling of impending doom is always there. It's hard to really describe. When your world has already collapsed on you it's hard to not expect the sky to fall again. Does that make sense?

This is our last 'on treatment' MRI. Hadley's next scan won't be until mid May. Three months. That seems like an incredibly long time. Assuming that the tumor stays stable we will have 4 scans over the course of the next year. May, August, November, February '08. The only words I have right now are 'odd' and 'scared'. We won't be actively fighting anymore. That is scary...but good. We will welcome the break...even if we are a little "guarded" with our optimism. I guess that's where faith and HOPE come in.

We have two visitors coming this week. Papa is coming in on Monday morning. He'll be here for a little over a week. We've been looking forward to this trip for weeks now. Ms Angela (my friend from Ca) is coming in on Wed. morning. =) So Ms Hadley (and I) will have a whole entourage at the hospital on Friday. =) It's always SO nice to have company to sit and wait and dread getting 'news' with. I'm sure the celebration Friday night will be much more 'festive' with their company as well! =)

We all got to talk to Brandon yesterday. It was nice to hear from him. He's tired...and looking forward to coming home...only a few more weeks. =)

Well, I'm sick....AGAIN...I thought I was better...not so much. I've been running a fever and feeling miserable. I didn't have any adult tylenol/motrin in the house...and really couldn't even THINK about taking all the kids to the store with me. So, I finally broke down and ate 7 chewable kids motrin. Ha ha...I am feeling a little better for now...we'll see how long it lasts. =) I'm really taking it easy...trying to just lay on the couch and get better. I need to be healthy by Monday. =)

Better run...
Please pray for our friends...Genna (nj/gennahenna) is scanning on Monday.

With Love and HOPE,
Angela

Tuesday, February 6, 2007 3:04 PM

If you can....listen to our local radio station on-line today and help support The Children's Cancer Association. They are a wonderful organization who have blessed Hadley and I during our hospital stays...They are doing a 24 hour auction...telethon type deal. Or you can even send an e-valentine for $10. So, if you can...please help!

You can listen on line at <105.1 The Buzz

Thanks Ya'll!!!









This is the product of my asking Hadley to write her name. If you look closely you can actually see the letters of her name...and how the "p" is actually her "a" and "d" run together etc. She did write the letters of her name...but I was blown away but it actually LOOKED like...hmmm!



She's still having some size and 'spacial' issues so I helped her out by making a seperate line for each letter...rather than regular ruled paper which all runs together. Here is her name written that way. =)

Saturday, February 3, 2007 9:20AM

Here are some pics...I've been a slacker so they're from several occasions. LOL!

So, Hadley has a boyfriend. I've yet to meet him...but, his name is Tavis and she assures me that he is "Happy Like Hadley Mommy...don't worry"! I'm SO not ready for this. =) She is growing up way too fast! =)

I'm finally breaking down and going to the doctor on Monday. I need to get on something to help me get through all of these crazy transitions in our life...and I think....joy of all joys...I have walking pneumonia. Every day I think I'm going to start feeling better the next day. My cough is gradually getting worse...I am tired and miserable. Please pray that an antibiotic will help. If it will then I should be feeling better by wed or thurs...I've really tried toughing this out...and it's jut not working. =( Thank goodness Liam went on an antibiotic when and his inhalers when he did...otherwise I fear he'd be one sick little boy right now. =(

Alright...here are the pics:

Thursday, February 1, 2007 12:50PM

Do you ever just feel totally overwhelmed? That's about where I was at in my last post. I apologize for being so...'ho-hum'.

Hadley hasn't shoved anything else in her ears yet. Yay! Apparently these last 2 cycles of chemo are going to hit her hard though. She's had an upset belly and has been very tired at school. I hope her counts stay up.

So...a bit of awesome news...Hadley is just barely starting to read!!! It is all memorization. But she can officially read 6 words!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I could hardly believe it myself. It is the sweetest most amazing thing ever. This little girl who had such a bleak cognitive outlook ...READING!!! It's just amazing to me. SHE is just amazing to me. Keegan said this morning: "Mom, Hadley knows like all the words in the universe to read." He is so proud of his big sister. He really needed that. =)

Liam is really struggling with Brandon's deployment. I am just at a loss when it comes to helping him. My sweet little bubby is so emotional and angry. I just have no idea how to help him. Any ideas??? Most of the books on deployment are written for older kids. Keegan understands that Daddy's 'job' is very important and admirable...he knows why daddy leaves us. Liam...not so much. He's just angry and a bit scared I think. All of the moving around can't be helping. =( Please just say a prayer for him.

Keegan is doing awesome at school and at home. He's really been trying to help me out. He really does aim to please people...I have to remember this when he does make not so good choices...he is so sensitive. But, I do have a funny story. The other day I told him to stop doing something or to go do it in his room. He tried to ignore me and got scolded. As I was walking away he was mumbling the 'dark side' theme music...ya know the Darth Vader music (Dum Dum Dum du-du Dum Dum)...yeah. Even I had a hard time not laughing. Apparently I can be referred to as either "mom" or "Darth". Oy...never a dull moment.

I have some other great news...Brandon got word that he PASSED the test for his next promotion!!! I am SO proud of him. He has worked VERY hard trying to balance his career and family...especially with all of Hadley's issues. It's been hard for him to really focus on anything but her and us...and everywhere he's expected to be...and everything he's expected to do. I am SO proud. So...it should be March 1st...But...very soon....he will be BM2 Fox!!! YAY!!!

Alright...well...I'm gonna run. I've got a lot to do.

With Love and HOPE,
Angela

Tuesday, January 30, 2007 11:15PM

I've tried writing this journal three times and keep getting interrupted or deleting and starting over.

Hadley's appointment went fine. Our official plan after her next cycle...due to end the 3rd week of March...is "comfort care". This is good. The break will be awesome for her. I am glad. But a part of me is so broken...torn. Where is the cure? Where is the "No Evidence of Disease" announcement and subsequent celebration? When does she actually get to be deemed a "Survivor"? *sigh*...way to see the sunny side huh. Believe me...I will welcome the break in treatment. But this was supposed to be the END of treatment. Instead it is a BREAK....as in...until the next time our world falls apart. Urgh.


Ok...so, back to Hadley her appt was fine. The little pain had shoved another flippin' bead in her ear!!! I told the NP that we needed to make sure and check her ears to make sure that she didn't get an infection from them being messed with etc. She looked in and said..."uuuuuhhhhhhhhh". I immediately knew. Had got a stern talking to and claims she will not do it again. Urgh.

Her weight has been steady at 60lbs for about a year now. I don't know if that's normal or not. Every time she's gained a pound or two she's lost it.

She is having some skin issues. Apparently auto-immune issues sort of tend to creep up through and after treatment so, apparently Hadley's skin peeling off in random places and red patches of irritated skin are just a part of life now. *sigh*. At least it's not asthma etc. It could be worse. MUCH worse. It's hard to remember that sometimes.

We started cycle #11 last night. Her next MRI is on the 16th. yipee. I hope we see an even smaller tumor. I really need to. Please start praying now.



I have some family news. Don't laugh...or think I'm a gypsy...well, I guess I am...but be gentle in your criticism. =)

We're moving. Yes, again. *sigh*. We had an opportunity sort of fall into our laps to move up to a suburb of Seattle. Our lease in our current place is up June 15th...so we'll move then. We're hoping to buy the house within a year or so. We'll see. We've got a lot of work to do. Our marriage had already seen 'better days' before Hadley got sick...now that her health is sort of 'quieting down' for us...we really need to be closer together so we can do the dirty work of making things 'good' again. Please pray for us. Pray for the move...the purchase of the house...etc.

Thanks ya'll.

Angela

Friday, January 26, 2007 10am

This is going to be quick...I shouldn't be sitting here. I have TOO much to do.

Liam is back on his asthma inhalers. His lungs sound like crap...and I got a bit of a scolding for taking him off them. Urgh...I THOUGHT he was doing ok. He is also on antibiotics for another 10 days. This time a double ear/sinus infection. Oy. This is his second 10 day round of antibiotics in 30 days. URGH! I feel bad for him...but...he's been such a pill...with good reason...but PLEASE pray that he starts feeling better soon. I've already reached the end of my rope..tied the knot...and am now hanging on for dear life. =)

I am tired...I really can't believe there are still SIX weeks til Brandon is home. And, I got the lovely news that their mid patrol port call has been canceled. SO, now I wont' even get to talk to him. I'm soooo tired. Some days I have a harder time with this than others. Today is one of those days.

We should be heading to Seattle on Monday for Had's appt. Just one more thing. 6-7 hours in the car...2 hours or so in the hospital. Thankfully this is cycle 11 ...this time next month we'll be starting our last. Wa hoo!!!!!!

Please say a prayer for us. I know we are strong enough to do this. It's just so darned hard sometimes!

Ok...off to get stuff done. Keegan's birthday party is tonight! I have to go put on my happy face and celebrate. I am strong enough...I am strong enough...I am strong enough! Ugh.

Sorry for the downer post...I just need a re-charge.

Angela


PS...there's a song I wanted to put here...but dont' have time to do it. Here are the lyrics:

Rascal Flatts
Stand


You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight
But you’ll be alright, you’ll be alright

Chorus

‘Cause when push comes to shove
You taste what you’re made of
You might bend ‘til you break
‘Cause it’s all you can take
On your knees you look up
Decide you’ve had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you stand

Life’s like a novel with the end ripped out
The edge of a canyon with only one way down
Take what you’re given before it’s gone
And start holdin’ on, keep holdin’ on

Every time you get up and get back in the race
One more small piece of you starts to fall into place – yeah

Yeah then you stand – yeah
Yeah, baby
Woo hoo, Woo hoo, Woo hoo
Then you stand – yeah, yeah

Tuesday, January 23, 2007 2pm.

howdy,

Sory for the delay. Life has been...hectic. It's mostly all 'normal' hectic...so that is something to be thankful for. As I previously mentioned...daddy is at sea...leaving me a "geographical single parent' once again. I feel stretched thin...and tired. But, I am managing...and it's better than being bored and sad. Right?!?

I have some great stories to tell ya. Although I don't really have time to type them out right now. Hadley will be home in a few minutes and we have to leave to pick Keegan up as soon as her bus drops her off. I think I emailed them...let me see if I can cut and paste:

The other night I was reading the kids that book "The Way I Feel". We got to "proud" and I wasn't sure if they really 'got it'. So I asked what are you proud of Keegan...Liam...Had? She blew me away when, without skipping a beat she said "I'm proud of Happy Hadley!". Can you believe this girl? I assured her that being Happy is a VERY good thing to be proud of. She is such a cool cat. =)

Then, tonight we were at the grocery store and we ran into one of her aides that I hadn't met yet (it is SO weird having her ride the bus and me never being at the school...)anyway...Hadley ran up to her and said "You're Sara...Hi Sara...Hi Sarah, You're Sarah..." then just when I started thinking...this girl is just always gonna be a bit 'awkward' (happy, but awkward) socially...she turns and reaches for me and says "Sarah, this is Hadley's Mommy...Mommy, this is School's Sarah". I couldn't contain myself I was so happy for her. WOW! Introducing people unprompted. PROGRESS!!!

Hadley spent 3 hours in the ER Saturday night. She shoved a pearl in each of her ears...and got them so jammed that the ER docs nearly couldn't get them out. How fun! NOT!!! I don't THINK she'll do that again. She said she NEEDED beautiful white diamonds IN her pretty ears. OY!



So those are the Hadley stories. This morning we were driving Keegan to school and along the freeway is a big wooded area surrounded by a chain link fence. For whatever reason this stresses Keegan out. I think he's worried about wild animals getting him. Poor city boy is still acclimating to the NW again. Anyhoo...he asked me if the fence would keep the bears in. Then Liam...without a second thought says..."I want to BE a bear Mama". Where do they get this stuff?

Brandon's ship made the news in Alaska and Idaho. Well those are the two places I heard of it anyway. They had to assist a Fish processing ship that was on fire...and then tow them back to port. Brandon made it sound like no big deal...so either he's gotten used to his job over the past 7 years...or it was a really slow news day.

The Guardian comes out on DVD today. =) I'm still trying to decide whether or not to watch it. =/ If you haven't seen it...I suggest watching it. I've heard from several Coasties that as far as the CG 'stuff' is concerned it's fairly accurate. It's worth checking out anyway...maybe I'll wait till Brandon's home safe, though. =)

This week has been a doozy...the kids school schedule have been all messed up because of snow/ice and sickness and holidays. Now they're finally back in school and I'm playing catch up. I have something going on ALL week. I had a cleaning job to finish up...another regularly scheduled one...a trip to Seattle for Hadley...babysitting...Keegan's birthday party on friday...and family coming. =) It's craziness...all of this AND Liam is sick. REALLY sick. He's had a cough...not unusual from our poor asthmatic kiddo this time of year...but, now he's got a fever (103 ) and is vomiting. He's been sleeping all day...and not even keeping down sips of water. He refuses Tylenol in every form imaginable. If his fever doesn't break SOON I'm gonna have to give him the rectal stuff. Poor guy!. Please say a little prayer for him. I have NO idea how I''m going to take Hadley to the hospital in Seattle tomorrow AND take care of my sick baby. This is when the whole 2 parent thing is really handy. =/



Sssssssshhhhhhh...tomorrow morning Keegan is winning an award for discernment at school. He won't know until he receives it. I am so proud of him!!!! He's growing up so fast!!! =)

Ok, gotta run...Had will be home any minute. Love to all.

Angela

Thursday, January 18, 2007 10am

Our year in pictures...be sure to check it out...don't forget to turn your volume up too.=) The Fox's 2006 Video Montage




http://www.GlitterMaker.com/ - Glitter Graphics - MySpace Layouts

We love you so much sweet boy!!! Enjoy "five" baby...before you know it "Six" will be here. =)

Love
Mommy and Daddy too...

Wednesday, January 17, 2007 2pm

Our year in pictures...be sure to check it out...don't forget to turn your volume up too.=) The Fox's 2006 Video Montage



Houston, we have our very own internet connection. =) Yay...

We're on snow day #3 since winter break...our 2nd consecutive day. Tomorrow isn't looking real promising either. =) We're warming up a bit, but it's supposed to get slushy and then re freeze tonight. YUCK!!! We've got a little over 3"s of snow on the ground...I LOVE it. The kids are going a little stir crazy though...which is making me a LOT crazy. Ha ha.

Brandon is doing well. I've gotten a few emails. Other than being homesick he's doing really well. Thankfully he doesn't get sea sick. This is a bigger blessing than you can know. =) He says Alaska is beautiful and would like to take me there someday. We'll see. =)

The kids are all doing well. Boogery noses and tickly throats but, so far we've escaped the monster cold/flu combo that seems to be going around. *knock on wood*

Keegan's birthday is tomorrow. I can't believe my little guy is turning 5. Oy. He's so grown up. I'm so proud of him.

Brandon has had to miss both Hadley and Keegan's birthdays...this makes me so sad. It's par for the course...we just got so spoiled being on land for those three years. This back to sea adjustment has been a hard one for us...in SO many ways. =) But. we're tough.

Well, I'd better get going. I don't really have much to say. Just wanted to reassure you all that we're still here plodding along. No news is good news I suppose. =)

With Love and HOPE,
Angela

Thursday, January 4, 2007 10am

I am excited to announce that I have started my own cleaning business. My schedule can be flexible enough to work around the kid's schedules...and I can make a little money to help supplement our military salary. If you live in the greater Portland metro area and are interested in more info please email me at: AngelaFoxCleaning@yahoo.com OR if you have my cell number give me a call. =)







Hi all,

Thank you again for all the messages and prayers. We're all doing well.

Daddy's ship has gotten underway again. He'll be out patroling the Bering Sea until mid march. *Sigh*...I think we're all gonna need prayers...but especially for Daddy and the crew...it's such a dangerous patrol.

I don't know if it's just in my head or not but Hadley seems to be really 'coming back to life'. She's had an overabundance of energy and has been SO happy. Of course with this comes a lot of age 'appropriate' behaviors like talking back, attitude, bossiness, etc. Oh the joys of having a 6 year old. One of my personal faves is when we get in the car...if I take to long getting things organized and letting teh engine warm she starts yelling at me "DRIVE mommy!!!" like she's late for a hot date or something. UGH. But it is good...she's acting more and more "6" with every passing day...and that is a miracle...truly!

Keegan is very excited to be back at school. He missed his friends and the structure that school brings. He's such a little smarty...he absorbs everything...too much even. He notified me that he had told some kids that his daddy is a soldier and that he is leaving on his ship. Said children notified hom that when warriors die they get put on a little boat and put out to sea...except when they shove them into a fire. ????????????? I tried to help him understand what they were talking about and explained that those rituals have names and why we do that. He is really growing up and I am, for the first time, having to deal with one of my children losing their innocence. =( But, at the same time...I know this is part of life and growing up and I am thankful.

Liam is enjoying having his siblings back at school. He really eats up his mommy time. He even likes grocery shopping as long as it's just Liam and Mommy. He's such a sweetie. He has a hard time around a lot of people so the trip was a little stressful for him...but he eventually warmed up and had a great time.

The kids did awesome in the wedding. The boys were stunning in their tuxes. They were brave and got the job done...well, kind of, Liam dropped the pillow about half way down the aisle and wasn't about to stop and pick it up. =) I'm glad someone had the foresight to tell the bride and groom (although it was more like begging) to really have the best man carry the rings. =) Hadley was beautiful, as always. We were a little worried as in every rehearsal she jumped, skipped, trotted or ran, shile screaming or singing at the top of her lungs, down the aisle. But, when the big moment came she was every bit the princess. She had a little "ball" of flowers instead of the traditional basket of petals. She wore it on her arm like a little purse and then walked slowly down the aisle stopping every few pews to whisper a greeting to the guests..."Hi, Hello, Hi..."! What a doll face. Then as the gorgreous bride was walking down the aisle and any other time there was music playing Hadley stood there proudly singing (making up words-mostly "and mommy....and daddy...and Uncle Evan....and Uncle Colin..." naming everyone in the audience she knew). *Sigh* I'm so glad she got to have that experience. I'll post pics ASAP.

Andrew and Hayley were smashing. Hayley was gorgeous...I can't wait to see the wedding photos. It was a beautiful wedding. Just right. What fun! =)

I have to get going. My next "PC errand" is to figure out what we're doing for cable and internet...that's right still no internet etc. Ugh. I need to get on the ball. =)

Have a great '07 ya'll!

Angela

Thursday, January 4, 2007 10am

Hi all,

Thank you again for all the messages and prayers. We're all doing well.

Daddy's ship has gotten underway again. He'll be out patroling the Bering Sea until mid march. *Sigh*...I think we're all gonna need prayers...but especially for Daddy and the crew...it's such a dangerous patrol.

I don't know if it's just in my head or not but Hadley seems to be really 'coming back to life'. She's had an overabundance of energy and has been SO happy. Of course with this comes a lot of age 'appropriate' behaviors like talking back, attitude, bossiness, etc. Oh the joys of having a 6 year old. One of my personal faves is when we get in the car...if I take to long getting things organized and letting teh engine warm she starts yelling at me "DRIVE mommy!!!" like she's late for a hot date or something. UGH. But it is good...she's acting more and more "6" with every passing day...and that is a miracle...truly!

Keegan is very excited to be back at school. He missed his friends and the structure that school brings. He's such a little smarty...he absorbs everything...too much even. He notified me that he had told some kids that his daddy is a soldier and that he is leaving on his ship. Said children notified hom that when warriors die they get put on a little boat and put out to sea...except when they shove them into a fire. ????????????? I tried to help him understand what they were talking about and explained that those rituals have names and why we do that. He is really growing up and I am, for the first time, having to deal with one of my children losing their innocence. =( But, at the same time...I know this is part of life and growing up and I am thankful.

Liam is enjoying having his siblings back at school. He really eats up his mommy time. He even likes grocery shopping as long as it's just Liam and Mommy. He's such a sweetie. He has a hard time around a lot of people so the trip was a little stressful for him...but he eventually warmed up and had a great time.

The kids did awesome in the wedding. The boys were stunning in their tuxes. They were brave and got the job done...well, kind of, Liam dropped the pillow about half way down the aisle and wasn't about to stop and pick it up. =) I'm glad someone had the foresight to tell the bride and groom (although it was more like begging) to really have the best man carry the rings. =) Hadley was beautiful, as always. We were a little worried as in every rehearsal she jumped, skipped, trotted or ran, shile screaming or singing at the top of her lungs, down the aisle. But, when the big moment came she was every bit the princess. She had a little "ball" of flowers instead of the traditional basket of petals. She wore it on her arm like a little purse and then walked slowly down the aisle stopping every few pews to whisper a greeting to the guests..."Hi, Hello, Hi..."! What a doll face. Then as the gorgreous bride was walking down the aisle and any other time there was music playing Hadley stood there proudly singing (making up words-mostly "and mommy....and daddy...and Uncle Evan....and Uncle Colin..." naming everyone in the audience she knew). *Sigh* I'm so glad she got to have that experience. I'll post pics ASAP.

Andrew and Hayley were smashing. Hayley was gorgeous...I can't wait to see the wedding photos. It was a beautiful wedding. Just right. What fun! =)

I have to get going. My next "PC errand" is to figure out what we're doing for cable and internet...that's right still no internet etc. Ugh. I need to get on the ball. =)

Have a great '07 ya'll!

Angela

Sunday, December 24, 2006 3pm

Merry Christmas Eve,

Sorry for the delay!

All is well. We have better news than we had even HOPEd for. SHRINKING tumors!!! =)!!!!!!!!!!!!!!!!!!!!!!!

Can't even believe it! So much else going on...so little time to 'report'. Lots of love and wonderful-ness going on in our home. Lots of germs too. Hee hee!

Thank you for the continued love prayer and support!

The Mama

Wednesday, December 13, 2006 1pm

Hello,

Just a really quick note. We're moving this weekend. This was unexpected but, for the best. If you're in our area and can help...drop me a line. If not...pray for us. LOL! =)

I'll update as soon as I have internet connection again...I have to go call on that and see when it'll be. =)

Angela

Friday, December 8, 2006 9:30PM

Hey There,

I can't believe it's been nearly a week since my last update. Time has been flying. =)

Daddy was home for 5 days this week and we took full advantage. We did some fun stuff and also got some errands run etc. We got Liam's birthday pictures done finally. We went to OMSI to see the Star Wars exhibit! All the boys were really 'geeked out' about getting to see the original Star Wars stuff. The most impressive though, was Yoda. Yoda has always been a big hit in our house and we got to see him up close and personal. How fun! We also went and visited The Oregon Zoo. Every Holiday season they have Zoo Lights. This is the first year we've gotten to take the kids. They had a BLAST!!! We rode the lit up zoo train, had elephant ears (MY personal fave of the night...lol), visited a few animals and Hadley even shook her boom boom with the likes of Rudolph and a Sea Otter wearing a holiday colored scarf. Good Times! =) As I mentioned in my previous post we also got our tree and set it up and decorated it. And ya know...it's beginning to look a lot like Christmas. LOL...Sorry, I couldn't help myself. =) I have a ton of pitures to share with you all I just need to get around to resizing and uploading and posting them. It takes longer than you'd think...but that may just be me getting old. LOL!

Liam and I had a play-date this week with a mom and another younger sibling from Keegan's class. Brandon and I actually went to college with this couple and now we have kids in the same class. Their daughter just happens to be Keegan's "favorite girlfriend" *sigh*. =) Anyway, we went to OMSI and strolled around for a bit and then took the kids up to the "Science Playground". It's a whole area set up for kids under 6 (or those with siblings under 6). It is SOOOOOO cool. Liam and Daisy had a BLAST! We seriously could have spent all day there and they wouldn't have been bored once. If they would incorporate a rest/nap area we just MAY go and stay all day. Do you think if I took Liam's blank he'd rest in an Eagle's nest? LOL!!! Anyway...OMSI was fun...but it was also really nice to just be able to go and hang out with a friend and have a conversation or 10...and just do something that didn't involve laundry, or doctors, or medicine etc. It was just fun. I've been really lonely since we moved...and it was fun to feel like I had a pal. =) Sad...I know. =)

Gramma and Grampa Fox bought our family memberships to both the Zoo and OMSI for Christmas (which they let us have early obviously). GREAT gifts! It'll be so nice to be able to go to both places and not have to worry about paying to get us all in etc! =) AND we get to take friends for free on each visit!!! =) VERY FUN!!! Thank You Gramma and Grampa!

Well, there's not really much to report. Hadley's counts are good. She's doing great at school!!! She is doing AWESOME with letter recognition and is even learning the sounds that each letter makes. This was "N" week and she came home with all her "N" stuff today and was saying "nnnnnnnnnn--N.....Nut...NO...Neck". It was GREAT! =) I'm so proud of her!!!

I will try and get pictures posted sometime this weekend. But, I'm heading to bed now...yes, at 9:45 on Friday night. I'm olllldddd...=)

Love to all,
Angela

Saturday, December 2, 2006 8:30pm

Another day another journal. We got our tree today. It was a 'chilly' experience. =)

I forgot to tell you all about the funniest Hadley moment of last week!!! We were at Grammy and Pop Pop's house. We were getting ready to head out the door. We were going to look at their new house (still being built) but had to stop by Home Depot on the way. So we were getting out the masks and I told Hadley that if she wanted to go in the store she had to wear her mask and that she could be bob the builder. Without missing a beat she looks up at me and totally dead pan says "Is that a Joke?". We were cracking up. It's not only funny but a BIG breakthrough for her! I'm so proud of this girl. =)

We're all doing well. I'm a tired mama...I've joined the ranks of the insomniacs of America again. Urgh!

Overall things are fairly quiet. I am grateful!!!

Hope your weekends are going well.

With Love and HOPE,
Angela

Saturday, December 2, 2006 midnight-ish

It's late o clock and I'm posting...watch out. =) I should know better than to do this. LOL!

First...I forgot to tell you all the funniest Hadley moment of last week!!! We were at Grammy and Pop Pop's house. We were getting ready to head out the door. We were going to look at their new house (still being built) but had to stop by Home Depot on the way. So we were getting out the masks and I told Hadley that if she wanted to go in the store she had to wear her mask and that she could be bob the builder. Without missing a beat she looks up at me and totally dead pan says "Is that a Joke?". We were cracking up. It's not only funny but a BIG breakthrough for her! I'm so proud of this girl. =)

Hadley is doing fine. We started a new cycle of chemo last night. She's already tired again. Ugh. But she's hanging in there. She had swimming at school today and it tired her out enough that they kept her in the special ed class instead of going to her typical kinder room in the afternoon. That makes me sad and angry. Not at the school/teachers...at cancer.

I am getting a little worried about her thirst. I know that sounds weird...but she is at a significantly increased risk of something called Diabetes Insipidus. Everyone who knows Hadley knows she hates drinking water. Over the past several days she has been chugging it like crazy. She's hardly even eating because she just wants to drink anything and everything in sight. I suppose I'll have to call if it gets too weird. But for now I'm just loving the fact that she's drinking so much water. I haven't noticed much of an increase in her urination or anything else odd. Just that crazy thirst. She told me tonight...when she was on her 2nd 12oz glass of water in 10 mins...."I LOVE water Mommy...I a thirsty..." Hmmm!

Obviously her counts recovered...I'm not certain it wasn't in part because her white count sort of shot up b/c she was fighting a bug. She and Liam and I all had a short lived mini 'flu'. Hers started at school on Wed. when she threw up all over the place...Liam followed suit that night...and by the time I woke up Thurs am I knew I had it too. Ugh. We're all fine and dandy now! I can honestly say I was relieved that Liam and I got sick...it reassured me that Hadley was 'normal kid' sick...not Brain tumor sick.

Anyway, her WBC came up to a whopping 4.1...ANC was 1250. She had to have a second set of labs drawn on Thurs. They forgot to draw a chemistry and electrolytes on Mon. It's getting hard to access a vein again. They had to poke her more than once on Thurs. She's such a trooper though. I hope we an hold off on the central line. Only a few more months of chemo...

Her next MRI is in just over a month (Jan 5th) *sigh*.

Daddy's ship is still in dry dock and shore leave for Xmas is not looking likely. UGH! I sure wish more people understood just how important Holidays are to our family. We just can't afford to take them for granted.

I'm feeling pretty down and angry lately. I don't know why I do this. I'll feel fine...and then WHAM! Had and Keegan are in school full time now. I really want to get a job...seems simple enough right. Yeah. Apparently mothers of cancer kids just shouldn't work. My husband is in the military making next to nothing for all the time he puts in. I'm frustrated. I want to help us achieve our financial goals. And I can't. I want to get out of the house and have a focus other than my family's trials and needs. And I can't. I'm beginning to feel like damaged goods. It just makes me want to cry and scream at the same time. I'm angry at this beast for invading our lives. I don't understand why people think they can gauge whether or not I can lead a 'normal' life or not. I'm sorry but after this journey I'm MORE equipped to handle the workforce. Other people's 'tragedies' are a cake walk when you've lived this life. A story comes to mind from our last duty station. One of the guys lived nearly an hour from the station. Brandon was supposed to get off work early so that I could go to a doctors appt. He couldn't get off because this guy had to leave work early and drive an hour home because the power had gone out in the north bay. His wife was spazzed out and needed him to come home right away and help her deal with it. ???HUH??? I seriously didn't know wether to laugh my butt off or go and hunt her down and smack her for being incompetent. I decided laughing was the nicer way to go.

There should be a "Survivor" where one team is comprised of moms of chronically ill children. I would put everything I own on that team kicking some serious booty. LOL!

Sorry for venting. I'm just frustrated..I need a nap. =) I think I'll go take one. Brandon comes home tomorrow for a few days. =) We're going to get our Christmas tree and start decorating for Christmas. We also got stuff for gingerbread men at the store today. =)

I HOPE you all have a beautiful weekend!!!

Angela
(the slightly disgruntled and oversensitive but always THANKFUL-Mama)


Wayna-I keep meaning to email you...It's so nice to 'see you'. I've loved hearing from you!!! =) Hope all is well with you!

Monday, November 27, 2006 10pm

It's funny how the 'smallest', simplest things can change your whole perception of someone you love. For the last 4 years I have seen Hadley as not only my baby girl...but as my autistic baby girl. She was always my daughter first...but, because I know her so intimately I perceived that the world saw her through a sort of filter. That was very hard for me...knowing ...thinking...that she was not seen through the same lens as the rest of the kids. She was judged differently...more leniently by some...much harsher by others. My biggest fear, though...was releasing her into a world of her peers. Today was the first step on that journey. Today Hadley started her first day of typical Kindergarten. She attends in the afternoons following her life skills class. I was nervous...very nervous. She understands now when she's being made fun of. She says "HEY, stop making fun of me!" now...I dread helping her broken little heart heal...and convincing her that she is worth more than her peers lead her to believe. Silly, I know...I had a typical life and my mom had to do that for me. Heck, she still has to...=)! But, given all that Hadley goes through...I feel that she should be exempt from the very heartbreaks that make up a typical childhood...the "typical" childhood that I grieve. Today...I saw a glimpse of Hadley through her peers eyes...My heart did not break...it melted. I am SO proud of this amazing girl. How can someone that is SO proud of another person sell them so short? I never give my Hadley enough credit.

Hadley was "The Star of The Day" today in her typical Kindergarten room. Her peers helped her fill out this sheet for her day as "the star":



In case you can't read it...it says: "I am Hadley---I am 6 years old---I like to eat Chicken Nuggets---I like to play Doctor---plays with Emily---*nice*----Shares---reads books."

I am not oblivious to the fact that we will still hit bumpy roads. But, I am seeing so much growth in Hadley socially. She is making friends, playing with them...they are enjoying her company...these simple things are not simple...they are the product of so much hard work and prayer. These simple friendships and perceptions of my beautiful girl are miraculous. I am humbled...she always shines...she always rises to the occasion. I am so proud of her!



She was a VERY tired girl after school today. But she made it through the day. We did labs after school...no results yet...I'll have to call in the morning...then we'll have to head to Seattle as soon as her ANC is above 1000 again.

After the lab we went and had the boys fitted for their tuxes for Auntie Hayley and Andrew's wedding. Neither of them were quite sure what a ring bearer was or that they wanted to be one...until today. They are definitely sold now! LOL! Here are a few shots...Liam especially was hamming it up BIG time. The guy at the shop kept telling him he was definitely James Bond...Liam has no idea who that is...but he apparently understood that it meant that he was cool! =) These boys crack me up.

Thanksgiving was good. We missed Daddy (he had duty)...but we had a relaxing time at Grammy and Pop Pop's house. The kids even got their Christmas gifts (and Mommy too). Here are a few pics of them with their favorite gifts.














There is something that I had not wanted to say anything about...as we are not certain if it is actually going to happen. BUT, we are looking at the possibility of buying a home next summer. It is a HUGE step for us...we never thought it would be possible for us...but, it also means a move. We are just not happy living 'in the city'. I think it's partly that we're both what I like to call 'countrified' city kids...and partly that we're parents. It would be nice to get out of town and into a less 'congested' and 'simpler' way of life. Home ownership is scary for us...because it is unknown. It is also proving to be quite complicated...some of our past financial skeletons are trying their darnedest to haunt us...but, I ask that you pray about this for us. There are so many things that make it feel 'right'...but...honestly I'm tired of relying solely on my judgment...b/c honestly...a lot of the time it stinks. LOL! So, please be praying for us over the next few months...that we are lead where we need to go...that we are able to accomplish what we need to...and that above all we are able to care and provide for our family and honor God in our choices.

The dream/desire is definitely there it's just a matter of "when"...and that is hard. Here are a few pictures of the neighborhood we are hoping to buy/build in. =)















I hope you are all well...
With Love and HOPE,

Angela

Thursday, November 23, 2006 9am

Happy Thanksgiving Ya'll!!!

We made it safely to Ephrata...there was very little traffic and no snow on the roads. Yay!

Hadley's counts have dropeed...Her ANC is now a gorgeous 400! EEK! There will be no black Friday shopping for us. Not that I'm heartbroken...we really don't have the money anyhow. And, i don't have patience for people who get ugly over saving a few bucks. So, no black Friday for me. =) Her WBC count is stable at 1.4. Plateltets are up to 154.

So, please...during this cold and flu season...remember to wash your hands well and often. And, if you are sick...take a break and STAY HOME! If not for yourself for all the people out there who are especially susceptible to nasty germs that your body is able to fight off...but may cause harm to another person.

Gotta run...have a thankful day!!!

With Love and Hope,
Angela

Monday, November 20, 2006 11am

Had's counts are low. White cell count is 1.4. ANC is 500. Her platelets are actually surprisingly high at 150. I hope they don't bottom out next week. Ugh. She's tired but feeling OK. We just have to be extra careful to not let her get sick.


You have, undoubtedly, noticed Hadley's new hairstyle. Wouldn't you know that most of her hair has survived over 2 years of chemo...but, long story short, a few minutes alone in her room with clippers...yep, her new hairstyle is courtesy of The Hadley Fox Salon. She buzzed the entire top and right side of her head...and sliced into the right side of the back of her head quite a bit. Let's just put it this way...she cut off more hair than we did. Ugh! We're just lucky that she didn't cut herself. Head wounds are always so fun to get to stop bleeding. Urgh!

I had prepared myself with the start of each new chemo regimen for her to lose her beautiful hair...I just never thought she would lose it like this. I was so sad I couldn't even get mad at her. Auntie Manda asked her this morning if she got in trouble and she said "nnnnnnooooo" in that...are you kidding...of course not tone of voice. She keeps walking around the house patting her head and saying "I got a head...right here". Truth be told...I think she LOVES her new hair. *sigh*

Friday, November 17, 2006 Happy 3rd Birthday Liam!!!

On this day in Fox Family history...a HAM was born! We love you bubba! Over the last 3 years we have watched you grow, laugh, love, learn, defy the laws of gravity, and thrive in some tough situations. Only God could have known how much our family needed you. You have completed our family and blessed it in ways that are too numerous to count...

Now, let me remember that for the year to come as you struggle to become more independent and push me to my limit to test my boundaries and predictability. Let me always remember how blessed I am...even as I am frantic and you are tantruming. Let me remember what a miracle your 'typical' development is...even when that means a tanrum. May I bask in the sweetness of your warm little hug...and the several "I love you Mommy"-s throughout each day...May I ALWAYS remember how lucky I am to have a Liam, just like you, to call my very own...and may I also remember that part of loving you so much is giving you the room to BE just like you...=)

We love you Liam, sweet boy, LiLam, Buddy, Bubba, 'baby liam'...we simply can't believe it's been 3 whole years!!! Have a HAPPY 'Birt-day'...

Liam had his 3 year check up on Tuesday. He was 3'3" and weighed 31lbs. Which put him in the 80th and 44th percentiles for height and weight. He is a healthy little guy. We're hoping his asthma issues are over...but have been given strict instructions to keep his inhalers on hand at all times through the winter. Other than that he is a perfect little specimen of health...PHEW!!! He got his flu shot...he was quite traumatized bet shook it off quickly and was quite brave , in my book! =)

Saturday, November 11, 2006 Veterans Day...

Wednesday, November 8, 2006 4pm

Hi folks,

I've been trying to write this entry all day. I've written and erased it several times...I just can't quite express myself right now.

I still can't explain why I am feeling the way I am. I have been sad and angry all day. Eveyone has been trying so hard to support me...unfortunatley it is impossible for anyone to know what to say unless I tell them. I dont' talk to most of you in person or on the phone or whatever...so all you know is what is posted here. You have to gauge what/how I am feeling by a few paragraphs of text that have no tone, inflection or emphasis....anyway...I just appreciate everyone's attempts. I really do. THank you so much. I love you all.

Now...what I'm having a hard time with.

* No matter what label 'they' place on or remove from Hadley...she is still the same kid she was yesterday and the day before. She has the same abilities and disabilities. My heart is STILL broken over her disabilities no matter what they are 'blamed' on.

* I FEEL significantly more responsible and guilty if this tumor caused all of Hadley's problems. This means that her TUMOR symptoms started at 6 mos old (maybe even earlier)...up until now we have blamed these symptoms on Autism. We "could" have found the tumor sooner if these symptoms were not in fact autism. In other words if the tumor is responsible for the deficits and differences NOW then it was responsible for those same problems THEN too. Which means that we overlooked this tumor for much longer than we previously thought. Furthermore...we overlooked it while Hadley was symptomatic. This is a HUGE weight for any parent to bear. It is something I will have to work through...and 'get over'...and few will understand it...but it is my reality.

* I am very frustrated with the fact that we will likely NEVER know exactly what is going on in that pretty little head. I would venture to say that Hadley's diagnosis could change several times in the years to come. Her disabilities and abilities are complex and very unique. It is hard for me to deal with the fact that I will probably never know what caused all of this. Even if the oppinion is that it is all because of the tumor...where did the tumor come from? It is 'like' losing someone to a mystery illness...there is no closure. That is hard for me.

* I didn't think it was possible to be any angrier at this tumor. I AM! I am fighting mad. This tumor has ravaged every aspect of my sweet little girl's life. I will NEVER be ok with that. I am tired. Nobody loves and respects this sweet girl more than I do...but, there is nothing I wouldn't give for her to lead a more 'typical' life. I love all of the unique things about Hadley...but man...what I wouldn't give for her to be able to tell me how she's feeling. What I wouldn't give for her to test "at age level"...or to not qualify for SpEd services. What I wouldn't give to not have to worry about AFO's and whether or not her AFO will fit in her flower girl shoes for Auntie Hayley's wedding...or to feel a knee jerk gratefullness that the dress was floor length so that her brace could 'hide'.

Alright...I need to go cook dinner. This would be a really great night to have a husband at home. Sigh. He'll be home on the 18th again. Thank goodness my mom and Brandon's mom are coming tomorrow evening for the weekend. I'm a mess. I've felt like I'm on the verge of vomitting all day. I've been hiding from the kids as much as possible. I just hate for them to see me upset over this crap...it's just not fair. I've been saying this for four years...it's just not flippin' fair!!! Why can't I get 'ok' wth this? Oh yeah...because it is my job to NOT be ok with it so that I can fight it. That's right.

Please pray for peacec in my heart and in Hadley's body and mind.

Thanks so much...
Angela

Monday, November 6, 2006 4:30pm

Sheesh...

I really have no idea how I should feel right now. Of course I never feel how I SHOULD feel...regardless I feel very sad, very robbed, and very sick to my stomach, Before I get ahead of myself...overall the IEP went well. I really love Hadley's teacher Mel. She is wonderful, knows her stuff, loves Hadley to pieces, and is willing to do whatever it takes to help Hadley to succeed (including being firm when she needs it and soft and sweet when she needs that). I got to meet the rest of the team that I hadn't met in person. That was nice. I like the principal. She seems genuinely concerned for each of the kids and actually knew what was going on with my child when she entered the room. Anyhow...I like the team. They had some observations that are different than my experience with Hadley...but I don't doubt that she performs differently at school for her educators than she does at home for Brandon and I. The "news" was not at all what I was expecting though. Not at all. Four years ago we were told that our sweet girl was autistic. For those entire four years we have continued to receive the same information and diagnosis. There have been two professionals who have given us a different opinion...but that is all. Through those four years we have noticed things about Hadley that didn’t' seem to fit the bill, so to speak...but, there was a lot that did seem to fit so we assumed that Brain tumor or not our daughter was, in fact, autistic. No doubt you all know where I am going with this. Every single member of Hadley's education team, including the autism specialist (who is an independent contractor) found Hadley to not fit the diagnosis of Autism Spectrum Disorder. The main arguments were that while she has gross developmental, cognitive and speech delays...they are too 'even'. She tests in all categories at an early 3 year old level. With autism you will typically see discrepancies in testing. Autistic kids will usually have very strong and likely above age level skills in one area and gross delays in another. Hadley also makes very good eye contact (when she wants to). In most situations she does not avoid physical touch. With the exception of loud chaotic noise-like several loud conversations...or several children's activities in one room (as opposed to loud music etc) she doesn’t show much of a sensory impairment. She is initiating conversation now...and seems interested in her peers and their activities. She has great facial expressions and expresses emotion very well...it just goes on and on. These were all things we were aware of. Some of them are skills she has developed over the last year or so. The general consensus was that Hadley's issues likely aren't and weren't cause by autism. At least not beyond a possible Asperger's diagnosis. They feel that her tumor is likely to blame for the majority of her disabilities. I can't say that I disagree. While this isn't a huge surprise it is definitely a bit of a shock to the system. I can't quite explain why this is so hard for me...why I am so sad about it.... why it angers me so much. But it does. Hadley is still the same kid with the same abilities and disabilities...but for some reason I feel robbed all over again. I feel partially responsible all over again. If I had just not settled for the answer of autism. If I had really pushed for that flippin' MRI...maybe we could have caught it sooner.... before the damage was so extensive...before it's effects were so devastating. If only...but...I don't have the luxury of knowing how anything would have played out 'if only'...*sigh*. I know it sounds silly but I feel like I'm dealing with a whole new diagnosis...even though in reality it's merely a shift of 'responsibility'. I am even angrier about this tumor than I was before. I am even angrier with the medical professionals that failed my daughter, my family and myself. I am angry with myself for accepting their shortcoming. And yes, I am even angry with God for allowing all of this. He knows everything about us...every hair on head, every thought, hurt and joy before we feel it or think it. How could He have 'let' this happen? Why didn't he reach down and help me see? Why...just a big fat WHY? On top of all the other stuff we already knew about...Hadley’s team confirmed my fears that Hadley is having memory issues. They have noticed that she is having a really hard time calling up memorized words and phrases. I noticed this about a year ago...but seemed to be the only one who really saw a remarkable difference. Any lapse in memory is an increase in symptoms/side effects b/c Hadley didn't forget anything. Urgh!!!

So...the good part of the IEP. After the team telling me their thoughts on Hadley's not being autistic I was prepared for them to try and yank a bunch of her services etc. I know that the services don't come with the diagnosis...but...well...ya know. Anyway...they seemed very nervous when they said that they had a new plan they wanted to run by me. I was ready to just melt. I couldn't take anything else...I felt really alone and ill equipped. But, much to my surprise they actually proposed the plan that I had been asking for all along. This was my first meeting with this team...I had only met previously with the team from our neighborhood or "home" school. I had asked for this from the get go...and they kept telling me it was impossible.whatever. Anyhow...they want Hadley to start attending all day. She'll continue on with her current class with the same schedule she ahs now. Then after lunch she'll be in a regular ed Kindergarten room with an aide!!! =) I went and visited her regular ed classroom and I am very excited. It is right across the hall from her current room where all of her SpEd teachers will be with the SpEd 1-3 graders. She'll have double PE, Music, Library, etc. She'll be with typical peers with the support she needs to learn how interact more appropriately. I am thrilled about this new placement. It's exactly what I wanted.


So...like I said before...even when things are 'good' they just don't seem so great. Please pray for our team of educators and docs...for Hadley and for this tired Mama. I'm going to make a neuropsych appt to get another point of view. As it stands Hadley will be starting in her new Kinder room after Thanksgiving break. =) Please pray that the transition is smooth, that Hadley has the physical stamina to last all day...and that this is a positive change for her!

With Love and HOPE,
Angela

Saturday, November 4, 2006 1pm

I can't believe it's November!!! REALLY...where on earth did the year go?

Fall is deffinitely in full swing here in the NW. If by "Fall" you mean RAIN-rall. LOL! The weather has been cold, WINDY, and Rainy...We've already had ice on the cars once or twice. It's so weird being back here...the weather in Alameda was so mild. It already feels like Thanksgiving andXmas are upon us (which they are...lol) in California it never really felt like Christmas or Thanksgiving...the weather wasn't right etc. You aren't supposed to put up Xmas lights in 65 degree weather and sunshine. LOL! I rememberd an old beer commercial that was out when I was in HS. I think it was for Rainier. Anyway...it was a small group of women trudging down the street in horrid weather all bundled up from head to toe...and still freezing. The narrator said something like "If you don't think this is sexy you don't belong in the nW...and you shouldn't drink Rainier"...As I was running in my Airwalk Uggs fakeys and my schoolbus yellow Columbia raingear coat from the car to the front door that commercial flashed through my mind and I just about wet my pants laughing. It is so true. I love this time of year...even when I'm cold and wet and tired and can't muster the energy to do anything...I do love it...but it is deffnitely not the time of year to try and look 'hot'...LOL! So, columbia raingear it is...at least for the rest of year. =)

Hadley is doing well...she's no longer in pain. She's not nearly as tiered as she was...she's just feeling a lot better. SHe HATES taking her "pink medicine". I can't rally blame her. She already takes so many meds...adding 14 mls of pink antibiotic FOUR times a day. Blech! Luckily we're half-way through. =) Had's IEP meeting is on Monday. I'm hoping it will be fairly uneventful sisnce we've alrady agreed on and started her in her actual placement. Now we just have to iron out the details of all of her therapy and the rest of her program. Please jusst pray that this actually does turn out to be as uneventful as I'm assuming it will be. =) LOL!

The boys are both doing well. Keegan has Grandparents day at school next Friday. BOTH his grandmas are traveling over to go with him. He's a lucky little boy. He deffinitely deserves a little special attention! Im so proud of him...he;s learned so much already this year! It's hard for me to belive he's growing up so quickly. I know I sound likke a broken record...but, I just can't express how huge a miracle his development and learning is to me. It is all so "typical" and that is miraculous. Just as miraculous as Hadley's learning is to me. My kids blow me away sometimes.

Liam is growing so quickly too. I sear he changes every day. Today he made up a song. As far as I can tell it's a lot of mumbling in a very loud "rock" voice...and the only real lyrics are "Awesome Dude"...=) ahhh...to be two and be able to use the phrase awesome dude without being chastised. Bliss. He also notified me that we can't throw Hadley's spmpkin away becauses his pet squirel "KiKi" (pronounced Key-Key)is eating it. He also wanted to know if we could let Ki-Ki live in the house. I told him no...a while later I found him standing at the front door whispering for Ki Ki to come in the house. LOL!!!! When I told him that wasn't ok he started bargaining iwth me and asked if KiKi could live in the playroom. Ugh.

These three deffinitely keep me on my toes.

Please be saying prayers for our friend Genna who has a scan on Monday. PMS sucks!

Please be praying for Hadley and my sad mama self. Stable tumors don't always mean stable condition. In fact sometimes things are a little harder to 'swallow' when they go wrong while the tumors are stable. It is just a reminder that things can be 'fine' and effects sand late effects can still happen. You don't focus on the long term effects of treatment while you are fighting so hard...you are aware of them...but you dont' focus on them. Anyway...it's just hard to be reminded that things will pop up for the rest of Hadley's life. While we will always be grateful for the opportunity to fight and the possibility of 'winning' the picture that is painted of the futures of young cancer survivors is just not ideal...or even pretty. Some may even call it unacceptable. I know there has to be a better way.

Sorry for that little downer...but it is a part of our journey. Sometimes when things are 'good' they can still feel so hopeless. So, what do we do...We Live...We Love...you know the tune. I think it's time to put it back up. I just love the song so much!

Thanks for stopping by! Thanks for the prayers...
Angela

Wednesday, November 1, 2006 4:10pm

**Added Friday 9am**
I realize that this person does not deserve the time or energy I am taking to write this. BUT, ya'll know me...my ability to 'just let things go' is, for some reason, impaired or non existent. LOL. So...

A person by the name of Jill left this message in Hadley's guestbook last night:

I JUST WANTED TO DROP YOU A LINE THAT YOU SHOULD GET A BOOK BY RUTH WINTER; THAT'S THE AUTHOR;
SHE HAS MANY BOOKS ON WHAT IS IN FOOD;
EVERYTHING NOW-A-DAYS HAS ARTIFICIAL COLOR AND FLAVOR--------THEY CONTAIN LEAD;
TUMORS CONTAIN LEAD, MERCURY, CADMIUM AND NICKEL;
WHAT I'M SAYING IS IS THAT THE PROBLEM IS IN YOUR REFRIGERATOR;
MEAT CONTAINS HORMONES THAT SPEED THE GROWTH OF CANCER;
DON'T EAT IT;
EAT ORGANIC FOODS; LIKE AT WHOLE FOODS MARKET;
AVOID THE ARTIFICIAL CANDIES AT CHRISTMAS AND HOLIDAYS; THEY CONTAIN LEAD;
THIS IS ALLOWED BY THE FOOD AND DRUG ADMINISTRATION TO FURTHER COMPANYS LOOKING TO MAKE MONEY;
LOOK AT WHAT IS IN THE REFRIGERATOR; THERE IS SOMETHING IN YOUR HOUSE CAUSING THESE CANCERS;
EITHER THE FURNITURE-----(ALSO CARCINOGENS)---OR THE FOOD;
JILLY
JILL NEWMAN
beverly hills, ca usa - Thursday, November 2, 2006 8:27 PM CST


I will not argue that I think that a lot of cancers are environmental. I am NOT debating that issue. What I am upset about is the insensitivity of this person. How on earth could she think for a moment that the message she left was supportive in any way shape or form? She has gone beyond indicating that I gave my daughter cancer and has out and out BLAMED me because I did not feed her whole foods and buy organic furniture. What the hell? Sorry...but what in the crap is wrong with people? If she is truly trying to help...which I really doubt...it sounds more like she's trying to sell books to me...she should try doing a little research on what to/not to say to parents of cancer kids. This merely irritated the heck outta me...but had someone actually posted this 2 or so years ago...I think it may have pushed me right over the edge.

Jill: If you honestly think that I haven't ever given any thought to every single poossible culprit for my daughters tumors at least a million and a half times every day and night for the last 2 1/2 years then you obviously have never loved someone with cancer. When it is your child that has cancer there is an increased burden of responsibility. It is my job to protect and care for this child...I have 'failed'. Do you honestly think I haven't thought about that without your help? Think again. If you'd like to sell books go elsewhere...if you'd like to support families with very sick family members take a class in sensitivity, get off your high horse, drop your belief that you could NEVER get cancer because you're eating whole foods, actually try helping and quit trying to sell stuff to hurting families. Call Candlelighters and suggest they carry this book...call ACS and suggest the same...this is not a site for business deals...this is a site for support. Please respect that!

Ok...vent over. NOW, I've let it go...I think...well, if I haven't I won't bring it up here again. =/ I have deleted the message from Hadley's guestbook. This is something that will be printed for her to keep some day. I want her to see all the support she recieved when she can better understand all of this...THAT has no place there!

Have a great weekend ya'll! =)

Angela






Well, our Halloween was fairly mellow...but busy as all get out. Does that make ANY sense? Yeah, I thought not. Anyhow...after Hadley's whole ordeal at the hospital and the weateher being frigid...it being dark...and Brandon being 5 hours away standing duty...I decided to wimp out and take the kids to the mall to trick or treat. All but about 3 of the stores in the entire mall were either out of candy or weren't handing it out at all. The kids still had a blast. The funest part for them was seeing all the costumes. I have a crew of "people-watchers" on my hands. LOL! We met up with Mike, Chells, and Lola...Aunt Michelle...Auntie Manda and Brian. I think we were all absolutely exhausted...but, the kiddos had fun and looked like cuties...so it was a succesful evening. Hooray!

Here are some pics:

Hadley, Keegan, Liam and Cousin Lola...=)



"Birdie" Hadley during the storybook parade at her school....Hadley was more interested in convincing me she needed to "go to the clinic" than being in any stinkin' parade...ugh.



Hadley...still not too thrilled about teh parade...and not eeling so hot.



I got the kids pics taken in their costumes. It's a pic of a pic...sorry...scanner still isnt' working right...and the photographers never emaied the digital version. Ugh.



Pic of the boys in costume...I LOVE this picture!!! =)

Tuesday, October 31, 2006 5pm

Osteomyelitis is the new vocab word of the day. Urgh. Hadley and Liam and I just spen 4 hours at the hospital. Remember that xray we did 2 weeks ago? Well, there weren't any fractures of anything...but hte pain never left etc. Fast-forward to last night...Hadley had scraped her knuckles (on the same hand) last week at school (a common problem given her coordination issues) and one of the sores looked a little gnarly. I let it go thinking I was being paranoid...well today during school it swelled up, got hot, and was pussy. So, I call and make an appt...and take her...thinking it would be simple...in and out...here's your antibiotics, go home...etc. Not so much. It isn't a surface infection...it's a BONE infection. So, after ANOTHER set of Xrays and more labs...Hadley just started a weeks worth of Keflex. Yay! I'm tellin' ya...if it aint one thing it's another.

The kids are beat...I'm exhausted...and now we're goling to put on our super hero costumes and go trick or treating. LOL! I know one little spiderman who will be hiding a binky under his mask tonight. =) Poor bubba.


Just thought I'd update ya'll and wish you a Happy Halloween. Be Safe!!! =)

The Mama
aka Angela

Monday, October 30, 2006 11:30am

Hi all,

Sorry I haven't updated. =) We've been both lazy and busy all weekend. =)

We are still after-glowing a bit about the stable MRI. I have found myself at times being a little disappointed with "stable"...I was really hoping to see some 'shrinkage'...then, I catch myself...I think back to where we have been and remember what a miracle it is that I'm even HOPE-ing for a cure...that I'm even HOPE-ing for smaller tumors. I've had several people tell me how in awe they are...when we had Hadley's 4th birthday party we really weren't certain that it wouldn't be her last. Now, we've jsut celebrated her 6th Birthday AND her tumors have been stable for TEN whole months. I'll tell you that 10 months ago we would have never dreamt that this is where we'd be right now. Last fall chemo had failed again...we had no options...not conventional, not trials. We just had to sit and pray that something...anything...would come along....open up...what have you. It was a terribly hard time for me. Our trip to Hawaii was bittersweet for me. It was amazing and wonderful...Hadley had an amazing time...as did the rest of us. But in a dark corner of my heart I knew that this could be the begining of 'the end' for her. And even amidst the magic that is "Aloha" that was hard for me. When we got home the tumors had mysteriously stabilized...and a phase 1 clinical trial had opened up. Hadley was approved as one of about 16 kids in the country (at that time)to be put on the drug. We've been stable ever since. What a long,long way we are from those dark days. But, as a brain tumor parent I am always aware that just as quickly as things calmed down...and just as quickly as Hadley went from a "healthy" kid to a Cancer kid...the wals could all come tumbling down again. There is also the fact that there are so many medical issues that continue to pop up because of the tumor(s) and it's treatment. Even when this monster is stable it still continues to wreak havoc on my sweet girl's body. Almost every function of your body is in some way controlled by the brain. That leaves a lot of room for malfunction in the body of a BT or brain injury kiddo. So...I guess what I am trying to say is that I am EXTREMELY grateful for the miracle we have been given. I will always be grateful for the days we have with our super girl...but I am human...and my gratefulness always seem to be at least mildly tempered with heartache and a little dissapointment. That probably sounds horrible...and in a lot of ways it is. There are WAY too many families out there who only wish they still had their children here with them. I am working on being truly grateful...not conditionaly grateful. It is just so hard to see your child hurting...it is sometimes hard to rejoice when things are "not as horrible as they once were". Does that make any sense?

I'm so sorry to complain...and I know this post makes it sound like I am really down. I'm not. I wish I could hang out with all of you...I think most of you who read this dont' even know our family in person...I promise I'm a bit more fun and a lot more light hearted in person! =) this is just my place to come and 'air out' and share this journey.

Thanks for checking on us. I have one of the MRI pictures...I have to scan it then I'll poost it. I also have Halloween party pics to share. Renovatus Had a GREAT halloween party. We were pretty late (traffic was miserable after the MRI)...but it was amazing!

With Love and HOPE
The Mama
aka Angela

Friday, October 27, 2006 10pm~MRI day~

Just logged on to add the video above. It is Hadley's favorite song right now. She sang it to me Friday morning as we got ready for Seattle. I thought it belonged here...so take a listen! =)

Hope you're all having a great weekend!





One Word....


STABLE!!!


I'll update more tomorrow...I'm beat...Thank you so much for the prayers and support!!! =)



Signed,
One Thankful Mama!!!

Wednesday, October 25, 2006 Noon

Birthday party ...

MORE Birthday Party...


Pumpkin Patch...



Hi all...I put the Birthday Pics back up...a lot of people missed them and couldn't find them...frequent updates just really mess things up. =)...You can click on any of the pics to see the full size images. =)

I just really can't believe how fast the kids are growing up. Liam is requesting a Curious George party for his "3 Party"...he is potty trained...he tells me every day that he is giving up his 'bink' for big boy dinosaurs on his birthday...one of his favorite pastimes is 'dancing like a dude'...he's a huge helper with his 'baby cousin Lola'...he is convinced he is as big as and can do anything Keegan can do, and then some...when he's not busy irritating her he even helps his sister with things she needs help with...He's just not a baby anymore....and he couldn't be happier or prouder about it. I deffinitely share the proudness.

Keegan...ohhh, Keegan...he's working very hard to find his own two feet...but he's in that awkward stage...he really still needs mom and dad there, just in case. He is truly amazing to me. His development is so miraculous. I am just so grateful for him. He is loving school and comes home with a new school or tidbit of knowledge every day. His latest, and most surprising...addittion...yes, ADDITION. Our 4 year old can ADD... He has friends...He is at or above what is expected of him academicaly/socialy/physicaly...he is happy....healthy...loving...silly...he's discovered the joy of 'tatttling'...All of this is amazing to me! He's growing up so fast.

Hadley...she just continues to push on...to grow through al that has been thrown at her. She is not a survivor...she is more than that...she has grown sos much through all of this. Surviving is just ...it doens't give her enough credit. She is learning how to write her name!!! She can make an "H" and almost has the "A" down. She is asking a LOT of "W" questions (mostly "WHY"...when we ask her to do or not to do something, of course). She went on her first field trip...swimming of all things. I was a wreck all day...I sent her lifejacket and wrote a lengthy note to her teacher. I know they know what they're doing...But, man oh man was it hard for me. She gets up every morning before 6am and rides the bus to school. She is eating Chicken Nuggets now!!! Craziness I tell you! Total Craziness!

This all so wonderful...bittersweet...but, wonderful! My babies are all growing up...there were days I really hoped for this...when they were all three in diapers at once I hoped this day would come...when we really weren't sure if Hadley would pull through...I prayed for this day. It just has hit me all at once...my kids are 'kids'...no more babies. Like I said...it's bittersweet. An answer to prayer...=)

So...the new song...it is one that 'gets me' every time I hear it. It takes a bold herat and a strong faith to say the words "I still believe in your faithfullness..." when you are trying really hard to just get through everyday with your family, your faith and your sanity intact. It is hard...it is what I'm striving for...to be able to say...without the smallest hessitation...or "but"...I Still Believe. Here are the lyrics:


Scattered words and empty thoughts
Seem to pour from my heart
I've never felt so torn before
Seems I don't know where to start
But its now that I feel your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It's my heart I see you prepare
But its now, that I feel, your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Well the only place I can go is into your arms
Where I throw to you my feeble prayers well in brokeness
I can see that this was your will for me
Help me to know that you are near

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

I still believe (repeat 8 X's)

Ohhh, i still believe, i still believe




Alright ya'll...Hadley should be home any moment...I have to run. Please pray very boldly for Hadley's cure! MRI is friday afternoon at 12:45...appt with the doc to get the pre-lim results is at 3pm.

Love to all...
The Mama

Sunday, October 22, 2006 7pm

Two and a half years ago today We were in teh ER at Children's Oakland...at about this time of the evening we had just found out that Hadley has a brain tumor and we were being transffered from the ER to the ICU. In just a matter of moments our healthy child became worthy of an ICU room. She didn't seem any different. Sleepy from sedation for the CT. But all in all the same. We were reeling. We had called our parents and they were doing the same. Everyone seemed to be scrambling...I just sort of turned off. Physicaly I was there taking care of my girl and caring for her brothers. But emotionaly I was long gone. Shock I guess. Or maybe ignorance. I just didn't really know what we were in for. Probably a mix of the two. Whatever it was it was my body's way of surviving. Two and a half years later...here I am trying to disengage emotionally again. Trying very hard to not 'feel' all of this. It's just too much to worry like this every 60 days. Every other month we are here...awaiting a peek into our child's brain to see if we can carry on our fight. I don't think that anyone who hasn't directly fought this battle could ever really understand how collosal each and every MRI is. It's like our whole life, our whole existence even...is just on the edge of a ravine....teetering...until we hear the word "Stable"...then we can breathe again...for another 60 days.

Enough of that though...those are just my random thoughts for the evening. It's therapeutic to get them out...not hang onto them. Maybe they'll help someone...I hope that they dont' hurt anyone...but sometimes pain brings about growth. I hope Hadley's story and our journey will bless people's lives.


...we went to the Pumpkin patch yesterday...it was fun. Hadley was pretty tired and moody...still not quite feeling herself. But the boys had a great time. it's a great thing having such young kiddos. Keegan went to the particular patch with his school and refused to pick another pumpkin. Hadley and Liam both wanted pumpkins they could easily carry. Liam was on a no holds barred hunt for the smallest pumpkin in the patch. I think he would have been much happier with a gourd. LOL! Anyway...we left Liepold farms in Boring, Oregon with 10lbs of Gala Apples (they are YUMMY too) and 2 pumpkins and our grand total was a whopping $7. I'm just holding my breath for the day that the kids decide they each need to find the hugest pumpkin they can imagine. LOL!




We had a nice, relaxing weekend. I'm working really hard to keep myself composed. So, if you see me...and feel the need to hug me or ask how I am doing...don't hug too long...or expect eye contact. I'm on the brink of total emotional meltdown. Please say a prayer for our girl...and for our family.

Love to all!!!
The Mama

Thursday, October 19, 2006 5pm

I just had to add this video. I'm going to try and get a better one. She was pretty tired this particular night. Hadley got this really crazy "love bug" from my grandparents (Hadley's GG and Papa) for her birthday. It is truly obnoxious after about 25 times through...but, Hadley LOVES this thing. It always amazes me how truly happy she gets over the simplest things. Her life isn't easy...it downright stinks a lot of the time...but she can truly laugh and be blissfully happy over a singing bear in a bug suit with bobbing heart antenae. You all know me...adn you know where this is going...so I'll just share the video clip before I get too preachy. Enjoy life ya'll....be happy! =) Anyway...she loves her Love Bug...truly adores it. If I get a better video clip I'll share it...oh, and please excuse the nose picking session at the end of the video. *sigh*...you just gotta take the gross with the sweet with this girly. Ha ha!





Hey ya'll...

I'm having a very non-super mom kind of day. I often feel like my job requires super human powers...none of which I happen to posess. We are in full swing PMS (Pre MRI Syndrome). I'm a little nuts these days. LOL...but like the new songs says "don't worry, I'm not crazy or anything"...LOL! I dont' even know if this is the right place for this song. I usually feel the need to try and keep it upbeat...this is Hadley's page and I try to inform and inspire...sometimes I'm just really cruddy at it. Today is just one of those days. I realize that I am much harder on myself than anyone else ever could/would be...and I create expectations of myself that probably very few if anyone shares...but they are there...and I feel very 'human'. SO...here are the lyricss to the song...it's called SuperMan:

Five For Fighting~Superman

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird...i’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me

Up, up and away...away from me
It’s all right...you can all sleep sound tonight
I’m not crazy...or anything...

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me
Inside of me
Inside me
Yeah, inside me
Inside of me

I’m only a man
In a funny red sheet
I’m only a man
Looking for a dream

I’m only a man
In a funny red sheet
And it’s not easy, hmmm, hmmm, hmmm...

Its not easy to be me



We're still waiting on a call regarding counts. But it's never a good sign when you have to talk an NP out of placing na IV right away because they can tell by looking at your child that they are going to need blood products. Hadley is just not in good shape. She has taht gorgeous blood vessel crud on the surface of her skin again because her platelets are so low. We had to Xray her arm because she is complaining of pain and there is a little bit of weird swelling...she's just not feeling very good.

Please just say some prayers...this is all so hard...then when you're facing an MRI...sheesh...it's nearly overwhelming. We have all of this...but we also have all of the typical family stuff...bills, money, marriage growing pains, chores etc...

I'm really coming off as whiney...so I'm gonna wrap up. Just say some prayers...

Monday, October 15 10pm

Ok ya'll HERE are the pics...sorry about the delay! I'm still wiped out...So is Hadley...apparently neither of us is as young as we used to be ha ha. Hadley really over did it last week and is having a really rough time. She is simply exhausted. Please say a little prayer for her sweet (and Cranky) self.

I also wanted to add a HUGE thank you to everyone who came out and helped us celebrate our girl!!! We had 12 kids (and 3 'on the way')...and 28 adults. =) Thanks ya'll!!!

Tuesday, October 10, 2006 8am

Hi Friends,

I really can't believe we're almost half way through October. Total Craziness!!!

Last night our Papa Bishop flew in. He's here for almost a full week visiting. We're so excited to have him here!!! =)

We're leaving in just a few hours on a 'little' road trip to pick daddy up. This patrol is FINALY winding down and he'll be on "stand down" for the next several days. That means we get him ALL to ourselves for the rest of the week! =) The last 6 weeks surely didn't 'fly by' like we'd hoped...it was a long month and a half and we missed our daddy terribly. We'll be thanking God tonight for another safe patrol...for a daddy who got to come home safely to us. =) No matter how "routine" any given patrol...being a coastaie is a dangerous job...we never take a safe homecoming for granted.

Hadley is still doing wonderfully in school. She loves getting up and going. I am so grateful for the program she's in, her teachers, aides and therapists, her bus drivers...and most importantly her love of learning. She is a bit tired...and looks a little washed out...but...it seems to be improving over the week. I think part of it was blood loss from her line removal. It was really tough on her. I feel so bad...but, she is SUCH a trooper!!!

Keegan is just loving school as well. His school had in service days Thursdday and Friday last week and he was so upset he didnt' get to go to school. It's such a relief when your kids truly love going to school and learning. He's sucha little smarty pants...I hope he never looses his thirst for knowledge...love of books...and excitement to play with his friends. It is SUCH a blessing watching him make and play with friends. I just can't explain how little things like this are just miraculous when you have a sweet Hadley who struggles so much with so many basic skills and functions. Who'd have ever thought that my child having friends would be a miracle to me?

Liam is still enjoying his time at home. He plays 'school' a lot...but he really enjoys helping me out with Lola on Mon, wed, and friday. He's such a sweetie....he is, however, really pushing me lately. Testing his boundaries I guess. Whatever it is...it's frustrating..it' a good thing he's such a cute little cuddle bug when he's not being a little monster. =)

Well, I still have stuff to get done before we leave...so I have to run...just wanted to let you know we're still here plugging along. =)

Hadley's next MRI is on October 27th. Please start praying now. I'm fairly relaxed about it...but I have a weird feeling in the pit of my gut...maybe it's just our last appointment up there still. Or maybe it's just that you never forget how quickly things can fall apart. Whatever it is...it's not in my hands...so, I'll do my best not to worry. Just pray that things are stable or better. We'll go back to my mantra "Peace and Results"...and now that the yucky line is out we may actually have some peace...so let's focus on those "Results" now! =)

With Love and HOPE,
The Mama (aka Angela)

Thursday, October 5, 2006 5:20PM

**Noon Friday**

Hi there...We're home from the Hospital...Hadley's doing well. The cuff (thire little part that holds it in)on her Broviac was a little stubborn...so she's quite bruised and woke up pretty irritated at me. BUT...the darnthing is OUT! Hallelujah!

We have an appt to have her Port put in on the 19th. =)

Thanks for the prayers ya'll.

Tubie-FREE is the way to be!

Signed,
The Mama






After a trip to the clinic for routine labs today...and our NP finding out that there was no plan in place to remove Hadley's nasty line...we NOW have an appt to have it pulled TOMORROW (Friday) at 9:15am. It is a SUPER quick procedure...I could do it...honestly...so we should be done my 10. SHOULD...being the operative word there. =)

This isn't a big scarey deal of any sort...just the usual prayer that it goes smoothly and isn't too traumatic for our 'bug'. Thanks Ya'll!

And...HOORAY...no more Tubies!!! We'll have her port put in probably sometime next week or the week after.

Love ya'll
The Mama

Saturday September 30th...10:15pm

Just a quick note before I head to bed...

Keegan's jog a thon went GREAT on Friday. He jog/walk/ran 5 laps...which is 1 1/4 mile in half an hour!!! Go Keegan...GO! That's pretty good for a 4 year old...=) So far his sponsor's donations are totaling $252!!! YES! I know we have a few checks coming in the mail that aren't included in that total. Keegan did an excellent job fundraising and running...I am SO proud of him!!! All of you who helped by sponsoring him are SO appreciated. It really does him some good to succed at something like this and get a little recognition. Our lives often become so "Hadley centered"...it's good to see him shining in something that is all 'his'. =)

I do have one story to tell ya'll real quick. I got to the track just as Keegan's age group was leaving the starting line. I was busy whipping out my camera trying to get a shot of the start of what appeared to be more of a race than a jog a thon...LOL. Anyhow...somehow Keegan had fallen and was pretty upset. I think he was embarrased and a little overwhelmed. At the time...for whatever reason...I only noticed Lydii there...but looking back at pictures it looks like Makinna was there as well. These two sweet girls stayed and helped Keegan up and waited with him and helped keep him get going. These sweeties were the flower girls in mine and Brandon's wedding. It is hard to believe they are so grown up. They did a very sweet thing and I am so grateful to them for it...and to Troy and Shauna for raising girls with such big hearts. I'm not sure how many laps Lydii went on to complete...but I knwo Makinna ran 11! Way to go girls!!! =)

Alright...so here are the pictures! What a big boy! =)

Thursday, September 28, 2006 7pm

I forgot to remind you all to go out and see "The Guardian" if you can. It is the new Kevin Costner/Ashton Kutcher movie about the Coast Guard. =) Woot Woot!!! I think I'm waiting for Brandon to come home to see it. Although, I'd like to catch a matinee before I see it with him...I know he's gonna make fun of me when I cry. LOL! It came out yesterday...get out there and see it ya'll!





Hello all...make sure to check out Hadley's birthday update and pictures in the journal history. =)


It was a lonnnng day. Everything went incredibly smooth...but it was still so long. Today was Hadley's Seattle check up and appt to pick up chemo for the month etc. We got to see our doctor...we've been seeing an NP (who we REALLY like) but it was nice to actually get to see our doctor again.

Anyway, we dropped Keegan off at school and hit the road running. We got to Seattle a few minutes before 11...got our labs drawn went down to the pharmacy and picked up chemo then went back upstairs and met with Doctor Geyer. Her labs look good so we start chemo tomorrow night. We reported side effects (mostly improvements in them since her dose reduction) and we were in and out in a jiffy. There are two things I've been stressed about the first being "what happens after the last cycle on the protocol?". The second being that Hadley's eyes have been deviating a lot again. We haven't seen this in a while. Her right eye is just all over the place again. I can't help but worry about that. In the past it has been an indication of tumor growth...but I am not allowing myself to assume that that is the case quite yet. Which leads me to the answer of the first concern. The doctor answered me by reminding me that we have no guarantee that Hadley will remain stable and finish the 12 cycles. And even if she does we have no idea (because this is a phase 1 trial) how long this drug will keep the tumor(s) stable. The whole reason for this 'new era thalidomide' is that the Thalidomide was able to stabilize tumors but the benefit was short-lived. We have no idea if that will be the case with this drug as well. Hadley is literally helping to teach the doctors what they need to know about this drug and how it affects brain tumors in children. So...anyway...should we make it the full 12 cycles (we're half way through-just completed #6 and ready to start #7) we will probably watch and wait and see what happens. *eek* I have NEVER waited for anything very well...I can only imagine how agonizing that will be for me.

Anyway...6 hours in the car/2 hours in the hospital and one reminder that this could all come crashing down at any time...later...we're home...the kids are in bed...I'll be following suit shortly. I couldn't sleep last night and the alarm going off at 5 am just didn't help...ha ha. So much for beauty sleep. =)

We're nearing single digits in our countdown for daddy's return home. I really can't wait...I actually started crying when I passed by the ports on the freeway today. I don't recommend crying while driving in the fast lane in Seattle traffic. LOL!

Well...I'd better run. Much to do...Much sleep to catch up on...yeah right. Keegan's Jog a Thon is tomorrow. Thank you to EVERYONE who has helped by sponsoring him. He has more than doubled his goal of $100!!! I'll take pics tomorrow and post them this weekend! He can still accept pledges through the 15th of October (By the way). =)

With Love and HOPE
Angela

Tuesday, September 26, 2006 9am

Pics from Hadley's big day and yes that IS a pancake with a candle in it. Hadley has been insisting ALL week that she have pancakes for her happy birthday. I had to talk her out of taking pancakes and syrup for special snack at school today! SO...my girl got a pancake with a candle. Of course I made a cake (and cupcakes) too. LOL!!!

Friday, September 22, 2006 9:30am

Hi all,

Everything is status quo here. Although, you won't catch me jinxing it by saying that out loud. Ha ha. Hadley is still loving Kindergarten. I am very pleased with the program she's in. I am so thankful that I had the resources and know how to get her the placement. I owe everybody who listened to me cry, scream, vent, etc a HUGE thank you. I also had a little help from an 'insider' who'll remain nameless...as I would never want it to 'come back on' this person in any way shape or form. But...you know who you are and I am VERY grateful for the "heads up".

One of Hadley's favorite parts of the day is her bus ride. She spends a significant amount of time on the bus as she is not attending our neighborhood school. She's actually going to the school in our district that is the farthest distance from us. Ha ha...anyway...thankfully she LOVES riding the bus. Thank goodness. =)

Keegan is also loving school. He really seems to be thriving there. I am so proud of him. I have gotten several comments on how sweet and well mannered he is. It is so nice to hear that. I think sometimes in the daily grind of parenting we forget how great our kids really are. Even I need reminders of that sometimes. I've said it a million times and I'll say it again. I am SO proud of these kids. They are happy, well adjusted and loving children. I don't feel like any of these are "considering their situation"...I think that even for kids in a typical situation they're doing awesome. The fact that they are burdened with so much just makes them that much more amazing. =)

Keegan is learning every part of a 378' Coast Guard Ship. This is the size ship Brandon is on and Keegan is VERY fascinated. I have joked with people that my boys are going to have to go to school "on the military's dime" since their parents are living on enlisted military pay. =) I have also joked that they are not going to enlist. They are and will be brainwashed into going straight to the CG Academy...graduate as an officer...and have a great career. I'm an evil mama...hee hee. Maybe someday he'll 'have his own' 378. =)

Alrighty...I have to run. I just wanted to let you all know that we are still here...plodding along. Hadley's birthday is next Wednesday...I think we're planning on going to a Chili's for dinner. They are doing their annual St Jude's fundraiser for Peds Cancer Month. I urge you to go to their website and find a chili's near you and show your support. I know a lot of them actually have a night where 100

Monday, September 18, 2006 10am

I'm totaly flooding you with pics and videos of Hadley today...but...I'm just so proud of her...and this is such a HUGE milestone for her. I can't believe my baby is a Kindergartner! **Sigh**

Here are some shots of Hadley as she was getting off the bus this afternoon:

And a few videos of her telling me about her day! Click HERE to see the first one...

Click HERE for the 2nd one.

Have a great week!
I sure have a smile on my face...I asked Hadley tonight, as I put her to bed, if she liked her new classroom. She said "Yes, it's NICE!". My goodness...this girl surprises me every day! =)

G'night...=)






Happy First Day of Kindergarten Miss Hadley!!!

I am so proud of this girl!!!

I'll keep it short...because I'm all kinds of mushy right now...I love you dolly!

Click HERE to see a video of Hadley right before her school bus arrived! =)

Sunday, September 17, 2006 3;15PM

Hi all...Nothing really new here. Brandon is still underway. But we're nearly to the halfway point of this patrol. It's a short one...it doesn't feel that way, though.

Hadley starts school tomorrow morning. Her first day of Kidnergarten. I can hardly believe it. I am mostly just thrilled for her...but there are some very sad parts as well. Sadness that she is just now starting because she was in the hospital on her first day...sadness that I had to work so hard to find an appropriate classroom for her. Sadness that her daddy isn't here to kiss her sweet cheeks and see her off...and then hug me when I fall apart when the bus pulls away. I know that mothers accross the country, probably the world, struggle with letting their children go off on this new adventure. But, I really believe that those feelings and fears are really amplified by all that Hadley has been through and all that we know is still to come. I AM however ridiculously thankful that she is here on earth to reach this milestone...no matter how hard it is for me. =)

The bus will pick her up at 7:10 tomorrow morning at our house and she will return around noon. I have every intention of having everyone ready to go and following the bus...But, Keegan has to be at school by 8...and they are in two seperate directions. We'll see what kind of super hero solution I can come up with. Only parenting can bring an event that is so heartbreaking and wonderful at the same time.

Well, that's really it at our house. I need to go and get some stuff done to make sre everything is ready for the week ahead. Hadley gets her new brace on Wednesday. YAY! I go to the ENT on Tuesday. Labs on Thursday afternoon. Other than that...nothing much going on. Ha ha!

Thanks for stopping by...
Angela

Thursday, September 14, 2006 7:15PM

Hello All,

Good news on all fronts! =) I love updates like this one. =)

I got the school placement for Hadley that I wanted and she needs. =) HOORAY! We're going to meet the teacher and see the classroom 'in action' tomorrow morning! =)

Had's counts look great. Her ANC is 900...platelets 97...and her white count is stable. =) So, she's going back on her chemo tonight.

Her IV antibiotics will be finished on September 22nd. The last day of chemo cycle #6 is the 21st. We have a clinic appt to pick up next month's drugs and do a check up on the 28th.

Hadley's birthday is on the 27th!!! I can't believe my baby is turning 6! We are waiting to have her party when Daddy can come...so October 14th is party day!!! =)

Alright...gotta run. Love to all! Thanks for stopping in...

We're still looking for sponsors for Keegan's Jog A Thon at Columbia Christian School. =)

With Love and HOPE,
Angela

PS...Thank you to our family at Renovatus for flooding our guestbook. We love you all and are so thankful for such a caring family of people to worship and serve with! =)

Wednesday 10:30pm

**I forgot to add that Keegan is doing his first Jog-A-Thon. =) He's such a big boy. Anyway...we made the decision to put him in the small-ish private school that I went to and graduated from. This is the 12th anual jog and every year they have a different 'project' for the money raised. Last year was media equipment for the school and classrooms. This year they are hoping to raise enough money to update the playground. The school's goal is 50k. Keegan wins prizes and recognition for the money he raises (ahem...this would be a GREAT way to help an often overlooked super sibling really SHINE)...all of this AND you'd be helping to support Christian Education. =) If you need our address feel free to email me at: FoxiFamily@yahoo.com (or you can use the paypal link above--just make sure to mark it "jog a thon" or "Keegan".
and here is the school's site: http://www.columbiachristian.com

The jog is on Sept. 29th...Pledge sheets have to be handed in by the 26th...the money has to be turned in by October 15th. All checks can be made out directly to Columbia Christian Schools.**




Just a really quick update...then I'm gonna try and get a little sleep before Hadley's midnight antibiotics. *rolling eyes*...

Tomorrow is a long, busy day for us. Please keep us in your prayers...We start out by dropping Keegan off at school a little early (thank goodness for before/after school care)...I'm gonna try and have him there between 7 and 7:15. The reason for that is because Hadley ahs to be at the hospital at 8am for bloodwork. They have to run a peak/trough to check the level of antibiotics before and during her doses. So...that's that. We also have to check counts and HOPEFULLY restart chemo. As long as Hadley is not neutropenic we can restart and finish the cycle (but not 'make up' any doses...we jsut have to miss those). If she is neutropenic then we obviously can't re start and I think the study chair will have to be called again. This study chair is gonna get sick of hearing about Hadley so often...ha ha...so please be rpayerful for those counts to be beautiful!!!

Then...in the afternoon auntie Manda is gonna come over and play with Had and Liam while I go to Hadley's IEP meeting. It's at 2:30. I'm a little stressed about it...but I feel better about it than I did a week ago. I found a program that would be eprfect for Hadley and even got to visit it. =) So, hopefully the IEP meeting will go well (by "well" I mean I get exactly what I want). I am a lot more hopeful and optimistic after seeing this classroom I found.

I'll tell ya...if ya know anyone with a child in Special Education give them a huge hug. Chances are they need it. It is so draining trying to navigate and negotiate...etc. I'll get through...I just can't wait to have an IEP that I like signed and in place and have it be over...for this year...LOL!

ALirghty well...I'd better run. But one sort of little 'funny'...kind of a laugh so you don't cry moment. Keegan told me tonight during bedtime prayers that he needed us to pray for his "counts". He went on to tell me that they were too low and that's why he has a little cold. He wanted to pray that they go "Up, up, up"...he also insisted that I make a clinic appointment for him...just to make sure that he'll be ok. Oh my...how do I explain to him that they don't treat 'healthy' children in the clinic. LOL!

Ok, good night...I'll update with counts and educational news tomorrow evening!

Angela

Tuesday, September 12, 2006 1pm

I FINALY have some good news! Hallelujah! The bacteria has ben identified...the IV antibiotics Hadley has been on since Saturday evening should be effective (according to teh lab tests). So, now we're just waiting for home infusion services to be set up. Well, they've already technicaly been set up...but they can't make it out to our house until after Hadley's evening dose (at 4pm). So we'll infuse antibiotics from 4-5 this evening...and then we're free to go home. Her next dose is at midnight...so, Home infusion will be by sometime between 5 and 12.

The plan for now is to complete the course of IV antibiotics and then 'pull' the line. The docs have finaly come to the conclusion that there is jsut soemthing 'germy' about this line...for some reason there is bacteria getting in and being harbored somewhere...and the 'repair' in the line is not going to help. While it is 'repaired' there is an abnormality now...one which could invite bacteria. So...teh line will be coming out. We'll probably repalce it with a port. I really didnt' want to go back to a port...as Hadley ahd a really hard time with hers. But, if it's this (being hospitalized every other week) or helping Hadley adjust to a port and having it accessed then we'll just have to learn to help her adapt. I'm sure she'll amaze us!

I still haven't heard about the chemo plan. Our contact in Seattle was going to try and get a hold of the Study Chair back east. The study chair makes the ultimate decision wether we get to stay on the trial or not. Please be praying about that. My nerves are shot regarding the chemo aspect of all these setbacks...I'm really trying hard to let go of that worry...but, what's a mom to do.

So, Thanks for the prayers...we're finaly heading home this evening...only about 4 mroe hours here. Hooray!!!

Please keep a fellow Coast Guard family in your prayers. They live here in the NW and they just had a VERY tiny...VERY premature baby! Pelase pray for this family!!!

Love to all,
Angela

Monday, September 11, 2006 Hospital Day 2 1/2

There’s not really anything to update you on. There is still no report on the exact type of bacteria we're dealing with. We're still running two types of antibiotics every 8 hours...and we still don't know if they are working. Hadley has developed a bit of a cold. Keegan had what I thought was allergies (red rimmed eyes, sneezing, post nasal drip)...well, now Hadley has it too...UGH! No fever yet...But she's been sleeping the better part of the day...and when she's not sleeping she insists on just sitting in my lap. She hasn't left her room yet today (which is VERY odd she is usually very anxious to get out and explore). Anyway...no news. Grrrr...

They ARE going to check her antibodies b/c they haven't done that yet and they think that a drop could be the reason for all the infections. Our wonderful NP is not here and won't be here until Thursday...Our Oncologist won't be here until Wednesday...so, I'm not really sure why they told me that we were waiting for them to make a game plan. Its noon and I just found this out...and I am beyond frustrated. The culture was drawn on THURSDAY afternoon and they still don't have the bacteria identified? So, we're basically stuck here with doctors who don't 'know us'...and while they SAY they are sympathetic to our unique family situation (Brandon being at sea and my 2 and 4 yr old sons being shuffled all over the place like pets whose owners have gone on vacation) but, ya'know...I'm sure everyone has a 'story' and they get used to hearing them. Having said that I realize that my daughter needs medical care right now. That is a given...but it is really frustrating to be in this situation and have nobody even willing to tell us when we MIGHT even start thinking about going home. =/ I'm assuming it probably won't be today...just because they still don't have the bacteria identified...and we have to have a negative blood culture before they'll let us go...and we have to have home infusion set up to come and deliver the pump(s) and drugs we will need at home. My guess would be tomorrow at the earliest...but I've been wrong before. We also still haven’t even drawn the blood for the antibody testing...and I have no idea how long it will take to get that back. OY!

So far Seattle hasn't been contacted about chemo or the trial. When I asked the nurses about this they went and got the attending and she said "I know who to contact" and then went on to invalidate my concerns over the delay and whether we would be allowed to continue to participate. I, very sweetly, informed her that we have experienced several delays and have already had to get special permission to dose reduce...etc. She just stared at me and promised to call them 'tonight'. Super. My cell battery is dead...so it's down in the car charging...as soon as I get it I'll be calling Seattle myself. I love it when our normal care providers aren't around...it's SO fun! =/

I'm trying really hard to keep a smile on my face. I never know how much Hadley understands of all this and I never want her to feel like a burden...but, I also don't want my boys feeling like total 2nd class citizens either. Keegan is clearly quite upset with me...and did NOT want to be at the hospital for a visit last night. Liam is not his usual spunky little self...and it makes me sad. People talk about how much I'm shouldering...I can only imagine how the kids must feel. Daddy's 'gone'...Mommy's gone in the hospital with their sick sister...we just moved not even 3 months ago...Keegan just started at a new school. Nothing in their lives even resembles stable right now. I just feel so sad...this is not the life I had dreamt of for my kids...and no matter what I do cannot make any of this 'go away' for them. This is so hard.

Anyway...no new news...just keep us in your prayers please...and don't forget Brandon who is out at sea...I worry about him being preoccupied and getting hurt out there.

Thanks for stopping by...don't forget to sign the guestbook so we know you were here...it gets sorta lonely up here. =)

With Love and HOPE
Angela

Sunday, September 10, 2006 2pm

I'm sorry for the lack of 'detailage'...there really aren't any details yet. All we know is that there is a gram negative bacteria growing in Hadley's blood. Her last infection was gram possitive...so obviously they are assuming that it is an entirely different bacteria this time.

Hadley JUST finished her IV antibiotics on Wednesday morning...The culture was drawn Thursday afternoon...and grew sometime Saturday. The antibiotic she just finshed is usually only effective on types of gram possitive bacterias...which is why it didn't kill this off.

Hadley seems "OK"...she hasn't had a fever or chills or anything that she had the last two times she was hospitalized. I begged not to have to come...but they said that it was very unlikely that this was a contaminant...and that gram negative bacterias can be especially serious and hard to beat (of course all bloodstream bacterias are serious and CAN be hard to beat...but apparently gram negatives are sort of notorious for it). She's got an ok level of energy...if anything she's just wearing out a lot faster than usual..but after a short rest she's ready to get moving again. She "looks" sick today...yesterday she seemed absolutlely normal. Today she has dark circles around her eyes and just looks punky. Of course 'sleeping' in the hospital is never helpful in the 'beauty sleep' department. =)

The boys are with our friends Troy and Shauna and are doing well. Brandon ahs been notified...and actually got to call ont eh ship's sattelite phone late last night. THose calls are never high quality (not to mention very expensive) so it was very short. I reassured him that we are OK. We're communicating (off and on) through email now. It kills me that all of this continues to wreak havoc on our family. Our WHOLE family...including the extended parts and Hadley's grandparents etc. It feels liek we've been dealing with all of this for an eternity...and it gets exhausting. I was reading a book to Hadley today that's called "Hang On Hester". It's a story about a little girl whose house gets washed away in a flood nad she and her dog, Red Moose, are stranded atop the roof...and as the flood gets worse and she floats along through various towns the townspeople all cry out to her "Hang On Hester"...and she does and is eventually pulled off the roof and everyone cheers about what a hero she is. It also touches on the people she inspired along the way. It was encouraging to read...we deffinitely have people in our lives cheering for us to 'hang on'...and we are and will continue to...but we are so ready to be 'pulled off the roof'. But cancer parents never wish for that...because there are only two ways 'out'...one is a cure...the other is not so 'happy'.

So, now we're fighting the infection...we had to stop chemo...and will likely have to fight to re-start. I really don't know that they'll let us. Which is REALLY scarey. Scarier, at least to me, than the infection itself.

Please pray for Brandon...I'm worried about him too.

Thanks for stopping by...I'll try to keep ya'll updated.

with love and HOPE,
Angela

Saturday, September 9, 2006 6:50pm

Please say big prayers...Hadley is being hospitalized AGAIN...for a bacteria in her blood...Brandon is gone...I'm a little...a LOT...Frazzled.

I'll update later...have to get to the hospital.

Angela

Wednesday, September 6, 2006 Happy First Day of Pre-K Mr Keegan!!!

So...the day started out with tears...not any of the kids. Just me. I didn't realize how hard it was going to be for me to leave my boy all day long. He goes 5 days a week 8am-3pm. He did great...and didn't seem too traumatized when I arrived to pick him up...and was even more 'un-traumatized' to be left there this morning. In fact, he LOVED it and can't wait to go back tomorrow! I am SO happy for him. I love this age when kids still LOVE school and learning. =) His only complaint: 'Mom, I don't want to leave my nap stuff at school...I don't want rest time at school.' Ha ha...and I was worried he'd be exhausted. His favorite part of the day seems to be "Pre-cess" (recess). He has every detail of hte playground memorized. =) He's such a boy! There are photos of Keegan's first day below. Hadley's not in any of them because she was just exhausted this morning and didn't wake up until well after we actually GOT to school. Ugh. Luckily for her she doesn't start until Monday. =)

Please keep our little private school's prinicipal and his wife in your prayers. Today was the first day of school and their home burned down. Completely down...to the ground...including their car...which was in the garage. Thank goodness Judy got out safely. Anyway...please keep the Outlaws in your prayers (yes that really is the principal's last name).

TOday was also my first day watching Miss Lola. She is my cousin Chellsee's baby girl...and as you will see below she is an absolute doll face. It was such a pleasant distraction having her to care for throughout the day. Thanks for sharing her with us Chells and Mike! I'll have her 3 days a week while Hadley and Keegan are in school. Liam adores her (all 3 of the kids do) so it really works out well. =) That...and I get my baby fix!

Here are the pics then I'll finish the update below them (the picture of the shoes is by Keegan's request...eh picked them out himself and is in LOVE with them...he told me this morning that we HAVE to send a picture of his shoes to grandma...=)...):

Friday, September 1, 2006 Happy Memorial Day Weekend!

Hello all...

Wanted to let you all know that Hadley's counts have recovered in record time. They nearly doubled in 48 hours. On Wednesday her ANC was 600...today it was 1100. WOW!!! That is craziness. Her white count is 2.1 which is higher than it's been in a long time...except during active infection times...at that time it was about this high and maybe up to about 3.5 or so. This makes me a little nervous...I know that's odd...but, Hadley seemed to have really rebounded quickly from the infection and then Thursday evening she really pooped out. And today she's been really sleepy as well. She's been down for a nap for a few hours now. Hmmm...I'll be taking her temp regularly...hopefully her body is still just working hard on that recovery.

Daddy is doing well at sea. I've gotten a few emails and he sounds good. Very possitive...and is getting a LOT done to fulfill promotion requirements etc. This military life is hard...especially when you're stationed on a ship...but, he really loves being at sea. I'm so proud of him!!!

The boys are good. Keegan is getting really excited for school...he starts Wednesday. Liam...well, when he does start school he's gonna have to go to military preschool. Ugh. THis kid is such a clown...and he's SO not 'afraid' of anything or anyone when his goal is to make people laugh. Today he was being so rambunctious, in an effor to make Hadley and Keegan laugh...and just wouldn't calm down...that I had to physicaly remove him from the exam room in the clinic. I made him sit in a chair outside the doorway until he had clamed down and would listen to me. It is so frustrating...because I want my kids to be happy. But they also need to be respectful of others...including not being horribly rowdy in public. Maybe I'm just too hard on them...but I would hate to feel like people hated for us to be around because my kids were out of control. I have my hands full for sure...but everytime someone uses that phrase (especially strangers) I fefel like they are saying I am not doing a good enough job...or that my hands are "too" full. I want people to know that I can handle my family. I'll let you know when I have that accomplished. LOL!!! Don't hold your breath...=) I sort of have issues with irrational and perfectionist type thinking. =)

Well, we start chemo tonight...I say it every cycle...but, I hate to start chemo. Just as her counts are coming up and she's starting to feel better again...we start pounding her back down again. Man this is hard. At the same time...we are now starting cycle #6. Which means at the end of this month we'll be half way through this regimen...after cycle #12 we will just wait and see what happens. That is a huge leap of faith. I can't imagine NOT being on treatment after 2 1/2 straight years of it. Weird! We're hoping that after treatment the tumor areas will remain stable...meaning the tumors don't grow...they will likely always be there. We just don't want them to grow.

I was thumbing through some old reports the other night. I read something I'd not noticed before...or don't remember it anyway. Apparently Hadley had tumor involvement in the "corticospinal tract". I didn't really know exactly what this was...so I did a little research...and all of a sudden a LOT of her deficits make a LOT more sense. Another thing that finaly makes sense is the fact that most docs who dont' treat Hadley on a regular basis refer to Hadley's tumor as either an optic glioma OR a brain stem tumor. The latter makes me twitch. Spinal cord/brain stem tumors are scarey stuff. Not that 'brain' tumors aren't...but...y'know. Anyway...the corticospinal tract is sort of a connecting "tissue" between the brain, brain stem and spinal cord. One of the major functions is motor control...and this is where the "right side of the brain controls the left side" and vice versa comes from. Anyhow...this is why Hadley's late effects of the tumor and surgery etc. so closely resemble those of brain stem and spinal cord tumors. All the same nerves were affected. Hmmmm...Just thought I'd share that little tidbit.

And in closing I thought I'd share some truly hysterical quotes from this week.

"Mommy are you making popcorn?"
"Yes Had, I'm making popcorn."
"Mommy are you making dreams come true?...yeah he did"

an exchange between Had and I earlier this week. "Yeah he did" is her new phrase for "yes...yes you are...yes she/he did...yes I did..." pretty much any answer connected to 'yes'.


"Mommy...I had a nightmare"
"Oh no...was it scarey?"
"Yeah, I was a monster"
"You were a monster???"
"Yeah...I didn't eat you..."
"oh that's good"
"No..."
It's not good?"
"No...I didn't eat you...a DINOSAUR did."

Mommy and Liam earlier this week. Yeah...he's TWO. Ugh!


And last, but not least, Keegan and I talking about a postcard he got int eh mail from his new Pre K teacher!

"Mommy...I LOVE my mail...I'm gonna carry it around with me FOREVER...except when I put it on the fridge...then you have to watch it for me so Hadley and Liam don't get it."

"ok Keegan...I'll watch it."

"Mom...when we move again am I gonna get a new teacher like I had to get a new girlfriend? Cause Bianca's (old g/f) too far away now."

"Keegan, don't worry about moving again...we'renot moving soon..and if we do have to move...mommy will let you know and we'll figure out your teacher and girlfriend sittuation."

"Ok Mom...I don't want to not have a girlfriend or teacher again...ok!"




Ohhhhh these kids...when strangers tell me I have my hands full...they have NO idea. LOL!

Have a SAFE weekend!

Love,
Angela



PS. We're postponing Hadley's birthday party to October 14th. please mark your calendars if you plan to come. =)

Tuesday 10:30pm PST

Weds 4:30pm

Just updating with counts...ANC was 600...not great...but at least we're heading upward now. Ugh...and the kicker is that the doctors wanted to keep us because of the infection and the low counts...So, here's my question...why were we discharged from the hospital in the first place? Her ANC on the morning of discharge was only 300 (half what it was today)??? Anyway, our NP talked them out of that...Thank goodness. I think they just like having Hadley around and know we won't come visit if we don't HAVE to. Ugh. =)

No chemo...we have to go back in on Friday for counts and another check up. It's no wonder I feel like we live there. =/







Hello Firends...

It's only Tuesday night and I already feel like another week has gone by. Yesterday was a lonnnnnngggg day. We got up at 4 am and headed into downtown Seattle...said our goodbyes...started back for Portland...went straight to the hospital (after finding a HOLE in Hadley's line!!! Yoikes!!!)...and spent 6 hours there having it repaired getting IV antibiotics etc...Then, THANK GOODNESS...our firends Troy and Shauna were kind enough to let us crash their dinnertime. Otherwise the kids were gonna get McDonalds again...not that they'd complain...but I start to twitch after so many consecutive meals coming from anywhere with a drive thru...ok so Denny's doesn't have a drive thru...but you get what I'm saying. Anyhow...I finally began to wind down around midnight...and fell asleep at about 1 am. Yes, if you do the math that would be a 21 hour day...on about 4 hours of sleep no less.

Naturally, we got VERY little done today. I had great hopoes of recovering the house from the usual weekend chore neglect...but, that didn't really happen. I got some laundry done...but, that was only because I could sit on the couch and fold it. LOL!

Tomorrow we head back to the clinic (I really think we should get our own room there...we could just have toothbruches and toys and a spare change of clothes etc.)sadly, I'm sure we're there a pretty average amount of time...I know there are families that are there more...and who drive much farther than we do. Anyway, we're just getting a check up (mid infection temp check etc.), doing labs...her last ANC was 300...so, we theoretically should have done it Monday...but, ya know...the broke line sort of took centere stage, and just spreading joy around the clinic...I'm sure the nurses would have nothing to do if we weren't there. At our past hospitals and clinics everyone has known Hadley...nobody forgets Hadley...now, everyone knows Hadley and "The Boys"...=) Poor guys...they really have just been drug all over creation lately. They're such good sports. Well, most of the time...the other times...well...we won't talk about those times...=)

Daddy is gone. I really didn't think it would be so hard to say goodbye. We're used to not having him here all week...I guess at this point I miss looking forward to his 'visits' the most. I worry about him...I was still pretty naive when we were on our last ship...I didn't really realize how dangerous it is to be a sailor on a 'smaller' ship...well, any ship...Anyhow, please pray for him. Pray for us...Most of all pray for the kids...They still don't really get it. Keegan, at one point started running down the pier screaming "Daddy, Daddy, Daddy"...while the ship was pulling away...I'm thinking oh no...my poor boy is going to have a break down on the pier...oh no! He says..."DAAAAAAADD...are you gonna see sharks? Take pictures of the sharks k dad!"...My poor little soldiers. Daddy may be the one in the military...but these kids should all get medals. Anyway...

Here are some pics...Hadley FINALY lost that very crooked/loose/cnarly tooth. Maybe now we can get a toothbrushing in...she's been even more oral defensive than normal lately. Maybe she'll start eating better too. The adult tooth and the one right next to it were both trying to break through the gum...but couldn't because that silly tooth was still there...that HAD to have been uncomfortable. THe pesky tooth is gone...and Hadley looks wicked cute with her big girl...I'm about to start Kindee-Garden window in her mouth. I can't believe what a big girl she is. It is sureal...we've worked so hard for all of this...I just can't believe it is happening. Starting Kindergarten...preapring to celebrate her SIXTH birthday...stable tumors for 8 months...It is just crazy!!! Even amidst the hospitalizations...teh crazy counts...the bacteria...and the bacteria AGAIN...We are SO blessed!

Alright...I'm tired...and I need to email daddy. Love to all...enjoy the pics.

Semper Paratus (Always Ready)
Angela

Sunday, August 27, 2006 noon

Hello all,

We were able to come home on Friday evening. Hadley is doing 'well'. Her energy level is improving...her appetite has been a little slower on the rebound. =) The antibiotics schedule has been a little rougher on me than I thought it would be. 4-5 hours of sleep a night is deffinitely not enough...I'm tired.

So, we're leaving this afternoon for Seattle. Daddy is leaving for a bit sometime this week, for a certain length of time to a certain-ish place. Of course I can't tell you here what those details are. Military rules. So...I'm twitching pretty bad because Hadley's counts are lousy. Really lousy. And here I am preparing to check into a hotel with her. Ugh. Can you say HUGE can of Lysol? But, I also know my kids..they are concrete and literal thinkers. They need to see the ship leave the pier. They need to understand the difference between daddy being on the ship tied to the pier and daddy being on the ship in the middle of the ocean. Does that make sense? So, I'm torn...and we're going...dirty hotel room and all. I've stocked up on masks and alcohol gel...and I'll go in the room first and spray it down with lysol...open any windows I can...but it's the bedding that freaks me out...so we'll probably take bedding for Hadley. Now I sound psychotic right. Oy...We just REALLY can't do the hospital again anytime soon. Not without a daddy home.

Alright...so...that's the lowdown. I've got laundry and dishes to get done before we leave. Better run.

Love to all...thanks for checking on us.

Angela

Friday, August 25, 2006 Hospital Day 4/Bacteria Day 5

***UPDATE 1pm***

forgot to add that Hadley's blood counts are dropping. Ugh. Her ANC is 300 which is the lowest I can remember it ever being. Her platelets are pretty good though! =)

So, the plot thickens...dramatic music inserted here...they found not one but TWO nasty bacterias in Hadley's blood. They're fairly certain that one was a contaminate...not sure why they think that..but that's their thought. The second turned out to be the SAME bacteria as a few weeks ago after all! Huh! So, this time they're treating with 2 full weeks of Vancomycin (since it's responding to it and we're already on it)and since this is day 4 on it we have 10 days at home to go. We can't give it via the Intermate. Bummer. We have to give the Vanco over 2 hours because of her allergic reaction. So, they're going to bring us a syringe pump that we'll use for the Vanco and the benadryl is just a push (goes straight into her line). Luckily, the doses are every 8 hours...so we'll give them at 6am (til 8am), 2pm (til 4pm) and 10pm (till midnight) which isn't such a bad schedule at all. Well it could be worse than going to bed at midnight and getting up at 6 anyway. =)

So, we're supopsed to be going home after our 2pm dose (so probably around 5ish).

Thanks for coming by to check on us. I'm still working on the Lotsa Helping Hands thing...Initially I'll post it and work on actually getting helpful stuff posted later. That's the part I'm not so good at. Anyway...I'll post that soon...promise!

Angela

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


Hi Friends,

First...I wanted to thank two people (or families)... was getting bills and money sorted out this morning and decided to check our paypal account. I ver rarely check it when I haven't been selling (or buying) stuff on ebay. Anyway, we had two very generous deposits made into our account. I don't want to embarrass anyone so we'll send personal thank you's in the mail. But, you know who you are...THANK YOU. If you have Ever put money in Hadley's Paypal account...Thank You!!! It always 'pops up" in there just when it would be most useful. Thank You!

Also, a big thank you to Grammy for coming and helping. To Alisa, Devin and Kara for the great care package. To our chemo angels for continuing to send encouragement and packages for the kids. To auntie manda for the help Tuesdady evening. And, thanks to everyone who continues to pray for Hadley (and our family).




So, Hadley is doing well. Her blood culture from Wednesday afternoon is still clean. Yay! So, as long as we get the sesitivity tests (and the bug identified) today we SHOULD be able to come home with the rest of the antibiotics. Also assuming of course that we can get home health to dleiver the antibiotics, IV benadryl and supplies today. The Vanco is given every 8 hours...so it won't be as 'easy' as the ceftriaxone we got to use last time. I'm not sure yet whether we'll have to have a pump or if we'll get more of those handy dandy pressurized bottle containers.

The NP said that sometimes they just get a line that likes to harbor bacateria for some reason. ??? I really hope that this is the end of our bacterial adventures and this line stays clean. It's the best line she's ever had...and we're running out of places to put them. Anyway...she is still fever free...but pale, and has little appetite. She has spurts of energy...but tires easily. I don't have her blood counts yet for today...hopefully they're still moving up. =)

We did some extra testing yesterday on Hadley's bladder and kidneys. She had an ultrasoound and what is called a VCUG. I think. Anyway...we knew (from a prior ultrasound) that Hadley had a duplex left Kidney. And it was starting to look like maybe it wasn't functioning properly. She seems to storing up drugs that are normaly cleared in the kidneys. She's also had symptoms of bladder infections without the infection for the past several months. Anyhow, everything looked fine! =) The final advice was that we need to really work to get her on a more regular urination schedule. A lot of autistic kids have problems with holding their urine and BM's too long and that can cause some minor issues. They did find out in the VCUG that her bladder is HUGE. She can hold a lot of fluid. I think the nurses said that they put in more tha 400cc's of the contrast fluids before Hadley even mentioned needing to go potty. ?!?!

Anyway...we're still scratching our heads about the drugs being 'stored' rather than cleared...but, we'll figure it out in time.

We're supposed to start chemo on Monday but I doubt that Hadley's blood counts will be high enough to start yet. We'll see.

I really hope that we can go 6 weeks without something like this happening again. It's a long time for a daddy to be gone...=/

I have to go feed the boys and get ready to head down to the hospital...daddy stayed with Hadley last night.

Hopefully, we'll ALL be home tonight!

Alright...

With Love and HOPE,
Angela

Thursday, August 24, 2006 9am

Hello,

It's funny how you forget how bad the sleep is in the hospital...=)

So, Hadley's bone marrow is pretty suppressed. It looks a LITTLE better today than yesterday. Her ANC was 400 (which means no playroom, craft time, group music, etc.--BUMMER)...Her ANC this am was 500. Which is better and is exactly the cutoff for the playroom...But, I'm so nervous for her to catch something and set back her counts/chemo/recovery from this infection etc. that we'll probably hang out in our room a lot today. She's reamained fever free...but has no appetite and is still pretty tired. She's pretty pale and washed out today...but, this is usually when her counts drop etc.

Her repeat culture from Tuesday was possitive for bacteria again...looks like we're not quite as 'lucky' as last time. The docs ordered another culture yesterday afternoon...and, last I heard there wasn't any growth yet. We'll keep our fingers crossed. They still ahven't identified teh bacteria...but, they said that by the way it is growing it doesn't look like it's the same bacteria. ??? So, it looks like we're starting over with our plan. We'll wait and see what the bacteria is and what it will respond to adn go from there...but, first we have to have a few negative blood cultures before we can even think about coming home. We'll see...I'm not getting my hopes up...

We've had several visitors...that's been SO nice. THANK YOU! We're not exactly the liveliest crew right now...but we do appreciate your coming! =)

Well, I got a 'lecture' from the social worker yesterday about how I need to "beef up" my support network. She asked me who I have to call in the case of an emergency (liek Tuesday when they needed to hospitalize her and I spent 7 hours with all three kids here at the hospital)...especially after Brandon's ship is gone. I sort of floundered for a few minutes...and a lot of that is my not wanting to ask for help/bother people/distract people's attention from people who "really" need help etc. She said taht there are volunteers to help with siblings but "they're not meant to be a babysitting service"...I tend to get defesive pretty easily...it's a fault of mine that I'm aware of...But, I have NEVER asked for a volunteer to help with any of the kids...our first day here in the clinic there was a volunteer in the playroom and the Nurse Practitioner convinced me that I could leave Liam in there while we took Hadley back to teh exam room. Anyway...apparently I'm bad at asking for help/making close friends/estimating my family's needs and preparng for them. SUPER! I felt pretty great about myself after that little meeting. UGH!

So, short story long...since I suck at all those things I've found a website created by a spouse of a cancer survivor called Lotsa Helping Hands. I'll be posting the site info here sometime today. It's just a way for me to ask for help without actaully having to ask for it. I know I'll need to work on that...but...baby steps...ya'know. So keep an eye out for that.

I'll update when we know any more about our treatment plan. We're just playing the waiting game. Pray for bacteria free blood...and beautiful bone marrow. =)

I'll update later...I'll try and get into the site email list to let everyone know when I update...but I always forget the login information...and since I'm not at home...well...I'm a disorganized mess. No excusues. =)

With Love and HOPE,
The Mama

Tuesday, August 22, 2006 7pm

Well,

We've got ourselves a room with a view at Hotel OHSU. I'll tell ya from firsthand experience that 7 hours in the clinic with three kids 5 and under is TOO much. I am maxed out. Luckily Brandon was able to head home around 2 and got to the hospital around 5:15 (reccord time for that trip at that time of day). He is staying with Had tonight...and I brought the boys home. They are exhausted too. I'm sure we'll all be going to bed soon.

Hadley is...well...she's ok. No fever...absolutely exhausted...and the poor dolly had a nasty reacction to one of the antibiotics. She's had it before and never had this reaction. It's a very common reaction (red man syndrome)...but, just a reminder that just because you (or your kid) have had a drug before doesn't mean that you'll react well to it. Anyway...they had to slow it WAY down and give her a whopping dose of Benadryl...and it slowly started going away after a few hours. Poor Dolly. She was beet red, had horrible dark circles around her eyes and her whole head was itchy. =/

Anyway, like I said...she's doing "well" for a kid with bacteria in her bloodstream. I just feel so bad for her to have to go through this all over again. Being in the hospital rots...hopefully this will be another short stay...but, whatever it takes to get this good and cleared up this time. There are so many kids there for such long, hard stays that I feel stupid even complaining about this. I mean a bacterial infection in a chemo kid is serious...don't get me wrong...but it's not exactly a Bone marrow transplant...ya' know.

The doctors have said that there is a good chance that this will be the same bacteria as last time and that it just never totaly cleared up. Apparenbtly it can 'hide out' in the line sometimes and avoid the antibiotic...then grow back over time. If that's the case they MAY decide to pull her line. That means another sugery and another line...ugh.

Anyway...please just pray that Hadley gets better...soon. I mean really better....truly better. I said in a past post that we're not going to be seeing daddy for a while...and that will be really hard for all of us if he has to leave before this stupid infection is under control.

Thanks for stopping by and checking on us!

With Love and HOPE,
Angela

Monday, August 21, 2006 11:15am PST

UPDATE 9:45am

The clinic called as soon as they opened this am...we didn't have to wait the 24 hours...Hadley's blood culture had already grown bacteria. BLAST! The odd thing is she is feeling much better today...probably the antibiotics she has on board. Please say your prayers. We're all going to the hopsital until we know exactly what the plan is...then I'll be scrambling to find a sitter for the boys.

I'm so frustrated...If we are admitted I can update from our room.

Angela



Update 2:20 pm

FOR THE LOVE! Hadley woke up as I was finishing my earlier entry. I drew her labs, took her temp (this is our routine during broviac care), got her dressed and loaded up the car for the hospital. We get there, I take her labs back to the nurse...walk back to teh waiting area and Hadley looks horrid and is shivering like crazy. I feel her head she feels fine...but sits in my lap for the 15 or so minutes we watied for her lab results. I ask her if she's co,d several times...she says yes...then right as we're leaving (labs look ok) she says she's hot. We get home and she looks even worse but the shivering has died down a bit. I take her temp...101.7! 101.7! Can you believe this?!? I am just beside myself. Certainly it isn't another stupid line infection. If I wasn't paranoid before I have been since her last infection. I have absolutely not let her do ANYTHING she isn't supposed to. I could just throw up. Litteraly. The kids are eating really quick then we're headed BACK to the hospital to draw a blood culture and see if they decide she can come home. Apparently her immature cells are a little high...but taht coculd be any kind of infection (which she obviously has-hence the fever).

Please pray hard. We SO don't need this right now. Ugh!

The Mama






Hi all,

It's 11am and Miss Hadley is still fast asleep. I'll have to wake her soon so we can get her labs down to the hospital. I'm really not expecting her counts to be 'pretty'. We'll see...seems like when we don't expect them to plummet they do...and when we do expect it they don't. So, we will see...I am surprised by nothing these days. =) Ok, that's a lie. =)

I have a bunch of pictures to share...I've been horrible about it this summer. These pics are from various outings over the last several weeks. A trip to the zoo with our friends the Dopps. A trip to the beach with our friends The Carrington's. A trip to see "daddy's" ship the USCG Cutter Mellon in Seattle. And a trip to the hospital for an MRI. This is only the second one that our whole family attended. It was a Loooooonnnnnnggggg day...we were all exhausted afterward. But, we got good news which makes it all worthwhile. =)

We are still hoping and praying for that miracle. But, I feel like I've resigned myself to 'this' life. I've resigned myself to parenting a "whole" child with a quite broken body. We were challenged this weekend to drop that way of thinking...and to ask God for total healing for Hadley and to expect it...let God work his miracle. Maybe I've just been dealing with the 'science' of this whole thing for too long. So, if you have it in you to pray boldly for the miracle of a completely clean scan for Hadley...please do so. I have prayed this prayer millions of times...but I can honestly say...I've not once actually believed that it could happen.

Anyway...I don't want this to sound like a downer of a post. We are very grateful for 'stable' it is a FAR cry from where we were a year ago...even 8 months ago. Stable gives us hope...and we're grateful for it.

Brandon will be home for a long weekend...then we won't be seeing him again for several weeks (about 6). This will be the kid's longest seperation from their daddy that they can remember. Please say a little prayer for them (and for me). He will be missing a LOT in those 6 weeks...it'll probably be more traumatic for me than for them...regardless, he'll be missed! Please pray for he and the rest of the crew's safety.

Alright...well here are the pics...have a great week!

With Love and HOPE,
Angela


PS. Grammy...Keegan is being a flamingo in the beach picture...he said that if you're going to be a flamingo that he can be a flamingo too. =)

Friday, August 18, 2006 MRI DAY!!!

We're home...and we brought with us the prelim. MRI report. It reads: "No evidence of disease progression."

YAHOOOOOOOOOOO!!!!


Thank you for all the prayers and thoughts! Now I have to go stand for a while so my booty can regain feeling. =) It's been a Loooooong day of sitting. =)


I'll update more later! =)


Did I happen to say YAHHHHOOOOOOOOOOOO?!?! =)



WIth Love and HOPE,
The VERY Thankful Mama



PS...we didn't get 'out of there' without any 'bad' news, though. Hadley's ANC is 600 (down from over 1100 on Monday!!!) She still has 3 doses left...so we were instructed to take neutropenic precautions over the weekend and report to the clinic first thing monday morning for labs. Blast! We also got the..."if she runs a fever over the weekend you HAVE to bring her in right away" shpiel (sp?). Say a little prayer that she remains fever free and that her counts don't drop tooo much lower over the weekend. UGH!

But...IT'S WORKING!!! I actually caught myself thinking about what we would do to celebrate WHEN (not IF) she was stable for 1 year. I NEVER thought I would be brave enough to even imagine that...sheesh...we are SO blessed. =)





I just found out some TERRIBLE news...Please pray for the families of two fallen "Coasties". They were stationed on a ship out of Seattle that was on patrol in Alaska. I just can't imagine...my heart hit the floor when I read the news! This isn't something ANY coastie wife wants to read...especially shortly before patrol. Please pray for these families!!!

Coast Guard News Story

Wednesday, August 16, 2006 8:15am

Hello,

I just dropped Hadley off at school and decided to sit down and write a few lines before I get started on my 'chores'. I forgot to tell you all that Brandon and I have a unique opportunity to share Hadley's journey (and our journey within that journey) on Sunday morning. We've been attending Renovatus since we moved here and Kevin has asked us (as part of a series of other speakers) to share our journey. Please be praying for this opportunity...ya'll know how emotional I get. I really look forward to the day when Hadley is no longer on treatment and we can tell her story as a journey we TOOK...rather than a journey we're ON. I always hessitate to say or write that though...too many of 'our families' exit the Peds Brain Tumor Journey by sending their sweet kiddos to heaven. I'll gladly walk this path as long as I can if that is our 'way out'.

Another little tidbit of news...You can now get to THIS site by using the address: HadleyFox.com
Pretty cool huh? It'll be a lot simpler to share her site with others with a simpler name. =)

Hadley's blood counts are unchanged from last week. I always get terribly anxious when her body seems unaffected by chemo. Maybe that's silly...but, it's the way I feel. I am a bit of a stress case over this MRI...Hadley had a 'break' (because of all those low counts) that was 3 times what the protocol allows. Then when she did finaly start chemo again her dose was reduced from 45mg/day to 35mg/day. I have a big knot in my stomach...I know I should be staying possitive and only thinking good thoughts...But, well, all I have to say to that is...If you know how to experience all the setbacks we have on this journey and ONLY think good thoughts...feel free to come on over and teach me how to do the same. You don't ever forget a relapse or a chemo failure....you REALLY don't forget FOUR in less than 2 years. This is the longest Hadley has been stable and I'm a little nervous about that. Aside from the fact that, when reviewing the protocol/trial information I found this:

"When thalidomide was given to adults with brain tumors, some patients’ tumors shrank or stopped growing. This beneficial effect lasted only a few months in most patients."

PBTC 018

So, yeah...I used to have this little rule...NO research during pre scan weeks. Yeah, it's back in effect. Unfortunately I don't have anyone to enforce it. Ha ha!

Alright, I have to go get some stuff done. We're leaving tomorrow for Seattle. We'll be visiting the base and Daddy's ship (we haven't seen it yet) and getting new military ID's etc. Hopefully we'll be able to do something fun after Daddy gets off 'work'. =) Then Friday morning Hadley is supposed to be in the scanner at 9:45. Say big prayers ya'll. God still has time to work that miracle...this is Hadley's last scan before her Birthday...maybe it could be her birthday present. =)

Have a great rest of the week. I'll update Friday night...it'll probably be late...maybe I'll be able to get a wireless connection and use brandon's laptop at the hospital and update that way. We'll see.

With Love and HOPE,
Angela

Monday, August 14, 2006 6:20

Congrats to The Keane's on the birth od their newest miracle. Danica Paige was born on Saturday morning! Congrats Keane Fam!!! We Love ya'll!


Just a quick note...hopefully I'll get back to update more later on...

Hadley is doing well. Brandon DID get to come home for the ENTIRE weekend! YAY!!! The boys are well. Hadley "had a FABULOUS day" at school. I'm one tired mama...trying to keep up with appts and school shopping and daddy's 'visits' etc. But, it's all good. =) Even in our crazy busy days we are blessed...school shopping is normal...ear infecctions are normal...being tired from sleep deprivation due to 'single parenting (only geographicaly)' is normal...I can handle all this! =)

So, I just wanted to update and let you all know that we are doing well. =) Isn't that nice to read?!? LOL...I've almost forgotten how to type that..."we're all doing fine"...yup all the keys still work. =)

PLEASE...start storming heaven's gates for Hadley's MRI on Friday. I believe that God already knows what the outcome will be...and He is leading us and preparing us for whatever path lies beyond Friday. If nothing else I just have to believe that SOMEONE is in control...or at least just knows what is coming. Does that make any sense? I trust that whatever happens...things will be just the way they are meant to be. Please pray for our family (all of us) that we have open hearts and minds for whatever lies before us. Please also pray for our netowrk of support (including yourself, if you're reading this)...we are not an 'easy' family to befriend. I mean sure we're all nice enough (when we want to be)...but, it is hard to love a family who is on the journey we are on. It is hard to look a nasty reality eye to eye...especially when they are such beautiful eyes on such a baby doll face. =) Just pray for them/you/everyone in our lives. Thank God for them, pray for their strength, pray that our family is able to make this journey in a way that ministers to those who are ministering to us. Again...I have no idea if that made sense...but it does in my mind. =)

Just pray ya'll...God knows what needs to be done...He always does.

With Love and HOPE,
Angela

Friday, August 11, 2006 3pm

Hello all,

It's Friday...Hadley's doing well. She's a bit tired...but feeling pretty good, I think. She has a full time one on one aide for school. She's doing great...I love her aide. She is actually coming home and telling me what she's done now (with prompting)...instead of only being able to tell me that she went to school. I am so grateful that the lady at the School distric was able to help us...and I am SOOOO graftefu for such a great aide. I'm convinced that there is at least one angel here on earth...her name is Donna. She is tickled to be working with Hadley...in all of her years of assisting autistic children she's NEVER had a little girl...all boys. =) I'm just so happy that Haldey is making progress and enjoying her experience. =)

I had a big scare yesterday. We took Keegan to his new school for entrance tests. I wasn't sure how long it would take so I took Liam and Hadley out to the playground. As I sat my bag and things down on a bench Had and Liam climbed up to the top of the slide/climbing structure. I walked over to about halfway down the slide and waited for Hadley to come down. She usualy does OK...but, I'm still always right there just in case. Anyway she walked to teh top of the slide and started sitting down. Usually she sort of does this cautious 'fall' thing to her right side and catches herself with her good arm etc. For whatever reason she leaned to her left side. Well...on er left side was a tall/open drop off into the bark chips below. I would say it's about a 6 1/2 foot drop. It's taller than me anyway...and I'm 6'1". Anyway...she fell and my heart just about jumped out of my chest. I was only two steps away but there was nothing I could do. SHe clearly wasn't seeing straight...no matter where she looked she couldn't see me etc. SHe was crying and not answering my questions etc. After about aminute she finaly focused on me and started answering me. "I'm Fine Mommy". The only evidence of her fall is a few little scrapes on her lower back from the bark. I think I would have been terrified if any of my kids had fallen like that. Seeing someone else's child fall like that would have been scary. But, seeing Hadley fall like that...your mind jumps to the worst case scenario...what if she had injured her neck or back etc. **Sigh**...why does my mind always do that to me? I am so terrified to lose my daughter. I love her so much...it's just not fair that my mind can't get with the rest of me and begin to let go of that fear...I want to live a more free life. Fear is my biggest prison. Thank God Hadley is ok...He is good. Now if he could help me let go of her...I will be fearful about the playground every day now...and she's not even going to THAT school.

Ok...so I think Brandon is coming home. I haven't heard from him yet today. He was supposed to take his pre board and his final board this week. THey've been busy on the ship and that didn't happen. He was promised that if he passed his pre board today he could come home for the weekend and take his final board Momday. I haven't heard from him...I'm hoping that's a good thing. =)

That nasty ear ache of mine got really bad...unbearable. I went to urgent care on Thursday am and to my normal doc this morning. Both doctors said I have a significant amount of scarring on my ear drums and that we need to find out what is going on and fix it before I expereince significant hearing loss. So, I have a refferal to an ENT. Until then I'm on 3,000mg of amoxicillin for 10 days...along with a rx decongestant. I'm still in a lot of pain...and the hearing thing is really obnoxious. My aptience is wearing thin with the kids...unfortunately they haven't figured out that if they play in their rooms while I don't feel good we're all a little happier. Instead...they want to be entertained and climb all over me...and bang on my head etc. **Sigh** I swear I'm the 'sickest' "Healthy Person" I know. LOL...I think once we get this fixed I should be fine. =) I will scream if I have to have tubes put in or something...why woudl an adult who didn't have ear infections as a kid have chronic ear infections as an adult? Weird.

Keegan did EXCELLENT on his testing for school. =) I'm so proud of him....he's growing up so fast. =) Can you believe that at this time next year I'll be preparing to send all THREE of my kids to all day school?!? Sheesh...Where have the years gone? I swear they were all just babies...I can remember the day each of them were born like it was yesterday. Now I sound old...I am...I'm ok with old...I'm much more content in my 'old' age. =)

Hadley is getting excited about her birthday. I don't think she understands taht we're not having it at the Zoo this year though. I told her that I am NOT driving her all the way boack to Oakland...taht she CAN, in fact have a party elsewhere. I assured her there will be cake...I think she's ok about it now. Septemeber 30th is the big day. She's also putting together a list of the things she wants. =) High up on the list is one of those little plastic sets of "hair tools". She's really into hair right now. Maybe even one of those 'heads' ...I know they have them in princess characters. I'm just not sure if she'll 'get it'...she likes doing my hair...but i don't have much anymore...lol!

Alright I have to get going...the boys came and informed me that "rest time is done mom"...Hadley is sleeping and if they wake her up I'm going to be one upset mama...Must go convince two loud little monkeys that our living room is NOT a zoo!

Love to all...
Have a great weekend!

Angela

Tuesday, August 8, 2006...

Thank you to all of you for continuing to check in on us, hold us up in prayer, care about us, etc. I received a few phone calls and emails and I appreciate them so much. Thank You!!!

Hadley was "allowed" to attend school for one hour this morning...I should clarify here...this is a Kindergarten preview...the objective is to help transition the kids into kindergarten. Miraculously, just over 48 hours after our llittle taste of hell started...I found someone at the district who listened to me vcery patiently...was as appaled as I am (only maybe with a little less emotion) at how Hadley was discrimnated against...AND...was willing and able to help us. Hadley will be attending the rest of the program...for the length that the rest of the children will be. AND she'll be doing so with a one on one aide. I was also told that I can expect a similar sittuation for the reglar school year. =) Hip Hip Hooray!!!

My 'fight' does NOT end here though. Oh no...I am SO not that Mom. I know of at least one school district, one school, and one non profit organization that WILL be getting letters from me requesting that their staff and faculty recieve SOME kind of training or at least get a sticky note or memo on how to handle special education cases...or the person to direct them too. Because identifying them then disregarding them until they become a "behavioral issue" in the first hour of class...and then trying to exclude (exclude would be the nicest word I could think of for "kick out")them from the prgoram alltogether...yeah...not legal!

Anyway...I hope that this sittuation woke a few people up. I hope that they realize now that I am deffinitely not the mom to try and steam roll. We've worked too hard to get here for that. Grrr...I hope that Hadley is not the only child to benefit from my frustration and hurt...I hope that we can make things easier for the next SpEd family to come through. It's unlikely...but, hey...we are a family who has to believe in miracles. =/

Ok...so I will let that rest (for now).

After Hadley's "allowed" hour at school today we went to the zoo with my friend Laura and her kids. They get along great with the boys and it was a lot of fun. I took a few pictures...we'll see if I get them uploaded tonight. =/

Tomorrow is school in the morning for Hadley. Then in the afternoon I have my surgery follow up appt. ya hoo. ha ha!

On Thursday Keegan has testing for pre K (and Hadley has school). I know he'll do fine...he's a smart kid. I'm not terribly worried about it...it's just kind of a weird feeling. I guess after all the 'testing' and evals we've endured with Hadley...after hearing over and over about all of her defecits and delays and differences...it just scares me to have another kid under the microscope...even if just for a 'minute'. I'm sure I'll get over it. =)

Friday we don't have anything planned. Hooray. It'll be our cleaning day...hopefully daddy will be able to come home this weekend. =)

Alright...I'd better get going. The kids are all in bed...I'm gonna try and relax and get to bed 'early' tonight. I just don't have it in me to be a splendid housekeeper and get all the things done that need to get done tonight...so I'll sit on my booty instead. =)

Thanks for dropping by...love to all...pray for our friends!

Angela



I ALMOST forgot to add that Hadley's next MRI has officialy been scheduled. We're doing it a tid bit early so that Daddy can be there. Because of OPSEC rules I can't say why he wasn't going to be able to come if we kept the original date...but...most of you know why that would be. SO...we're doing the MRI early which means I have to fast forward through some of my usual "PMS" routine. Most importantly I need to find my stinkin' T shirt...it's been missing since the move. I can't imagine that any of our movers would have a need for such a shirt...so, it has to be here somewhere.

ANYWAY...the date for the MRI is August 18th. Yup...a week from Friday. OY! We have to be there at 8:45am (in Seattle). But, hooray for early MRI's and short NPO waits. =)



Another add on. Please pray for my stupid ear(s). I've had chronic problems (totaly nothing major)...but now I had an ifection last week...and my right ear was horrible...hurt terribly...couldnt hear out of it etc. It finaly cleared up for a few days...now the pain is back...and, now just a few minutes ago the hearing cut out aagain. I feel like I have my head under water. It is quite annoying...and frustrating...when I can't hera correctly it makes mlife difficult...which shortens my fuse significantly. My poor kids. blech. I suppose I should go to the doctor...oh wait I am...but, he's a surgeon...and it's a surgical follow up. Do you suppose he'll look in my stupid ear anyway? I dont' want to go to urgent care...and I still don't have a doctor for MYSELF yet. UGh...Why am I so dumb?

LOL...!!!

Monday, August 7, 2006 8-10pm

Can anyone help me interpret this? To me it looks like under IDEA we can request for Hadley to receive special education services at a private school that WE place her in (and pay for)? I can tell you one thing...If could choose for her to get special edducation support in our current public school or at the small private school I went to (and we're sending Keegan and Liam to)...I would do everything in my power to make it happen. I know 'everyone' there...I know she would be loved. If she could attend school there and have the support she would at Public school...why wouldn't we try it. Except that I just remembered that Kinder is full...and I seriously doubt that if they WERE going to let an 'extra' kid in it would be Hadley. Bummer. Anyway...this would still be good info t have there are other schools and more school years...just keeping the wheels turning.



Hi all,

So, please quit praying for Hadley's school sittuation. I think God is testing me. Hmmmm...maybe, maybe not...ha ha. We've been talking about Exodus at church...it feels like, since our long awaited move back to the NW, we've been in the middle of a 'desert' rather than the lush NW we remembered...in more ways than one. Regardless Hadley's school sittuation has gone from bad to worse. I realize school hasn't even technicaly started yet...but, things are not happy. There are very (VERY) few times I can recall honestly and truly feeling like my child was being discriminated against. Today..was one of those moments. I'll spare you all the gorey details...I haven't had internet connection today...which is probably to your benefit...I wasnt' a happy mom today...so I didnt' let you all know about it as it happened and I'd really rather not revisit it. Well, until tomorrow morning at 8am when I take her back, anyway. UGH!!! There's nothing like feeling like you're throwing your child to the wolves 'for their benefit'. GRRR!

Anyway...Hadley is doing well. Her counts are good...(as of Friday...we'll get results from todays labs tomrorow)...ANC 2000...platelets 91. Her ANC is better than it's been in a while. =) Her yeast issues seem to be clearing up. Thank goodness. Still fever free...energy level back up to baseline. Everything is gravy...except that she is still 'different' and in this world...well...we are reminded quite often that "neuro-typical" people sometimes have a bigger problem with "different" than autistic folks...which is really quite ironic to me. **Contemplating sending Hadley to school tomorrow in her "I Have Autism. What's YOUR Excuse?" T shirt....hmmm (see our 'cafe press' store if you feel you need one of these...)!

All I know is that I love this girl. I have never once given up on her and I don't plan to start now. If this school or any of it's faculty expect me to back down so that they don't have to do their job or fulfill their obligations...well, they picked the wrong Mama. So, look out. I wasn't a very stubborn person before I was Hadley's mom...it's something she has taught me...or helped me learn. Thanks Had. She makes me a stronger person. All three of my kiddos do. I have strength I never realized I had before I had children...Hadley just brings it out more often...because, well, we've had to fight a lot harder for her.

I have some research to do...some z's to catch etc. Please pray that I have an 'easy' day tomorrow. Ask God to give me the day off...we can go back to universal lessons etc on Wednesday...but, I really need a break. I swear...I need a super power...I don't even care what it is...jsut any super power...I'll find a way to make it work for me. No cape though...I've seen The Incredibles too many times to fall into that trap..."NO Cape!". =)

Love to all...hope your days are easier than mine this week...=/...if you live near feel free to drop me a line or a call or whatever. I could really use a friendly face...you dont' have to 'do' anything...I just need some company...it keeps me from wallowing. =) If you're really lucky we could even break out some Scrabble. =) Wow...I sound pathetic...I need to get some 'unemployed' friends...I'm a lonely girl.

G'night all...
Angela

Saturday, August 5, 2006 2:45pm

Hi all,

Before I update I have a few things to say.

If you take anything away from knowing Hadley take these two things. OPEN YOUR HEARTS!!! Let yourself love...Love God, Love People, Love Children, Love animals...let yourself LOVE. If you are walking aroud this earth 'living' with a cold heart you aren't really living. So LOVE. Hadley is a prime candidate to not trust anyone...to be terrified, angry, detatched. But, she is not. She LOVES. We are so lucky...so blessed. She doesn't understand why we 'put her through' everything we do...and yet she loves. certainly the rest of us can find the courage to do the same.

Secondly...don't live for tomorrow. It has NEVER been promised. Keep your word, give of yourself, love the people around you. Don't wait till you're dying to "live"! Live now! Hadley certainly doesn't procrastinate...sometimes to a fault...=)...LIVE NOW! Forgive Now, 'Do' now, Love Now..."Later" may never come.

Alright...off my sopabox... no particular reason for that. I just felt the need to say it. So, the new song...I 'stole' it from another CB friend of ours. They've had some of the lyrics on their page for a while. I'm sure Genna and family won't mind too much. Genna's Site

The lyrics are great:

There's a cross on the side of the road
Where a mother lost her son
How could she know that the morning he left
Would be the last she'd trade with for a little more time
(so she could say she loved him one last time)
And hold him tight
But with life we never know when we're coming up to the end of the road
So what do we do then
With tradegy around the bend

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

There's a man who waits for the tests to
See if the cancer had spread yet
And now he asks why did i wait to live til it was time to die
If i could have the time back, how i'd live
Life is such a gift
So how does the story end?
Well, this is your story and it all depends
So don't let it become true
Get out and do what we were meant to do

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

Waking up to another dark morning
People are mourning
The weather in life outside is stormin
But what would it take for the clouds to break
For us to realize each day
Is a gift somehow, someway
And get our heads up out of this darkness
And spark this new mindset and start on with life cuz it ain't gone yet
And tragedy's a reminder to take off the blinders and wake up
(to live the life)
We're supposed to take up
(moving forward)
With all our heads up
Cuz life is worth living

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love







Hadley is doing "well". We haven't heard anything back about hte culture...that's usually a good thing. =) But, now she has a horrid yeast infection. Poor Dolly. Any yeast infection is bad...but this one is especially horrid. I feel so bad for her. We have a prescription for it now...so hopefully it'll start clearing up soon.

We have labs on Monday. Haldey also has her Kindergarten preview...so I'll draw her labs...take her to school and then the boys and I will run the labs downtown. By the time we get back Hadley should be just about done at school.

Please continue to pray for Hadley's school sittuation. I grow increaasingly concerned and irritated with each passing day. Please just pray for it be resolved soon and with minimal 'conflict'.

Thanks for stopping by to check on us. Please continue to pray for our family. Daddy was only able to come home for just over 24 hours this week. It beats sending hin over to the 'front lines'...but it's still so hard. Loneliness is a struggle of mine anyway...and now...having another adult here an average of one night a week. Well, it's just rough to shoulder all of this alone...please pray.

Alright gotta run...

The Mama

Wednesday, August 2, 2006

**Update Thursday**

Just a quick note...today is cleaning day and I've banned myself from all things not related to cleaning or paying bills. Hadley's Endocrine appt went 'well'. The best news is that I really like this endocrinologist better than our last. =) The not so hot news is that there are some troubling signs
that Hadley may or may not be experiencing some failures. She's not having any terrible symptoms...but some of her hormone levels and such that were on the fairly high side seem to be bottoming out now. Her thyroid function is very low...which the first thing to “go” is apparently usually. Her bone age X-ray would be at least expected to age in 'real time' and it hasn't seemed to age at all. There is some subjectivity in reading those so we're going to do some labs and see what we can find. There is also evidence that Hadley was over exposed to estrogen for some period of time...but, again her symptoms aren't progressing (which is great) but, it could point toward a failure rather than normalization. So, we're looking at that. The good news is that we don't have to worry about precocious puberty anymore. The bad news is that this could be the start of the shut down of her Pitt gland/hypothalamus etc that we've feared since the very beginning of this journey. It MAY not be. We'll just have to see. But, Hadley, who has always been at the very tops of the charts for height and weight, is BARELY hanging on to the bottom few percentiles in height now. Weird! She is definitely not a candidate for growth hormone replacement...because of the active tumor...so, even though we can't treat it per say...our endo wants to know if she's experiencing failure so that we can watch everything else. Ugh! Anyway...I'll be drawing the labs on Monday with her usual labs and then we should get them back in 7-10 days after that.

Having said all of that...I will say that we have gotten all freaked out about her endocrine status before...and then decided that there was nothing that needed to be treated etc. We'll just have to see. I guess it's just the thought of hormone replacement and non functioning thyroid in a five-six year old that troubles me. We'll just have to wait it and see. =)

Say a few prayers...I don't even know what for...just pray...God knows what our girl needs. Also pray for Had's blood culture tomorrow!!! For Chemo to continue to work...for school preview on Monday...oh the list goes on.

One little tidbit...last night bible classes were canceled because so many people were out of town. We had a short little devotional. The kids did really well for most of it...then in the last few moments (during prayer, of course) the kids all three started giggling...then they were giggling at each other. I was horrified..trying to quiet them. Afterwards...I had at least three women come up and tell me how sweet their giggles were and how it made them smile. Phew...Maybe God sometimes blesses us even through "unruly" children. =)

Miss Gina, if you're reading this I am going to try and get back to you tomorrow!!! But, No...we do NOT know what is going on with Had's schooling...ugh!

Have a great day!
Angela



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


Forgot to add the lyrics to the new tune. It's a good one. My children deffinitely changed my life...and even with all of the nightmares we face...well, I have a pretty good life. I am quick to forget how blessed I really am. This song sort of talks about how blessings put the pain of life into context...which makes this 'thankful' song more authentic for me than some of the real sappy ones. Anyway...life isn't a fairy tale...it just isn't...I don't care who you are. BUT, there are still AMAZING and WONDERFUL blessings that we need to be mindful of and thankful for each day. My children are just 3 of those blessings! My husband is another...we've struggled so much...and sometimes I was truly worried we wouldn't make it through...and that it was all in vain. My husband is, in so many ways, a blessing to me. Don't get me wrong...he can be a pill...=0~ But I am so thankful for him. I just thought I'd share why I chose this song...and the lyrics. Just something to ponder. =)

Artist: Staind Lyrics
Song: So Far Away Lyrics

This is my life
Its not what it was before
All these feelings I’ve shared
And these are my dreams
That I’d never lived before
Somebody shake me
Cause I, I must be sleeping

(chorus)
Now that we're here,
It's so far away
All the struggle we thought was in vain
All the mistakes,
One life contained
They all finally start to go away
Now that we're here its so far away
And I feel like I can face the day
I can forgive and I’m not ashamed to be the person that I am today

These are my words
That I’ve never said before
I think I’m doing ok
And this is the smile
That I’ve never shown before

Somebody shake me
Cause I, I must be sleeping

(chorus)

I'm so afraid of waking
Please don't shake me
Afraid of waking
Please don't shake me

(chorus)





It's 11:30...I'm still awake. I took Tylenol PM an hour and a half ago. Hmmm...lots on my mind...

The boys are home safely. Thank you for the prayers!!!

Hadley has an endocrine appt tomorrow afternoon...then a blood culture on friday. Monday she starts her Kindergarten preview program. 8-10:30am. Her sleeping in until 11 or noon thing should make that 'fun'. Hmmm.

I have some pics from thorughout the summer to share...but, I need to resize and upload them...hopefully soon! We've been in this house for 2 months now and my bedroom STILL is mostly in boxes! OY! =)



So, I went to sleep and decided to finsh up the journal this morning. I don't really have anything more to say...so, I guess I'll wrap it up.

You can mark your claendars for Hadley's Birthday party. It'll be on September 30th. I think it's gonna be a lot of fun. Supergirl, Wonderwoman, and Superman for the boys. I need to get crackin' on the capes! =)

With Love and HOPE,
Angela


Here's one "teaser" photo...Hadley decided to make 'dinner' for herself...note that she was civilized enough to actauly get a plate out for herself. LOL!!! Too funny to NOT take a picture of!!!

Monday, July 31, 2006 5:15pm

Hello,

Things finally appear to be getting back to "normal". Hadley's coutns today were finally high enough to start chemo. Her infection appears to be under control. So. we'll start at a reduced dose this evening. Her ANC was 1100 (had to be 1000) and her platelets were 139 (had to be 100). As you can see we barely scraped by...but we made it. =) Hadley's original does was 60 mg once a day for 21 days-and one week of rest. Her new dose (because of low counts and infection etc) is 45mg once a day for 21 days followed by one week of rest.

Tonight's start date for cycle #5 puts her next MRI on August 28th. That's 4 weeks from today. OY! I have a sick feeling in the pit of my stomach already. I've felt really calm about the last two MRI's and now...for some reason...I'm really anxious again. Hmmm...Certainly it couldnt' be all the other 'trauma' that's taken place over the past two months?!? Hmmm...

The boys are coming home tomorrow. I don't think they're quite ready...they'd be happy to stay with gramma and the family for a month I think. =) Hadley misses them...and so do I. The 'break' has been so nice. I really needed some one on one time with Hadley. I told Brandon that I hadn't really realized how stressed and exhausted I was. I really did need a break.

It's looking like Keegan is going to be able to go to Columbia Christian for Pre K. I'm really excited about this. It's a bit of a stretch for us financially...but, I think we can do it. We have to pay for preschool somewhere and I am the most comfortable with Columbia. I think he'll really like it there! He has his testing on August 10th and then we'll register him. He's going to be SO excited!!!

I am supposed to be calling the district special ed office about Hadley's placement in jsut a few minutes. The person I'm supopsed to talk to was busy in meetings all day. Hopefully I'll get some information. I'm getting a little beyond anxious about her placement etc. Please pray for that sittuation. I tend to get overly 'passionate'. I am more than willing to work with (vs against) the school district...until I feel that my child's needs are not being addresed. She has the same right to education that everyt other child has...and it makes me very sad that...in a lot of cases that education has to be fought for. BUT, I need to keep telling myself that the school district and I are a team and that I need to give them a chance to do their job before I start lacing up my boots and packing my lunch. LOL!

Well, I've decided that I need to not work right now. I've been battling back and forth. I know I've mentioned a few jobs here and there...but, I just decided that I need to be home with the kids for now. caring for Hadley is pretty full time. The boys already tend to get a little short changed...and that would only get worse if I took on a job. What I AM going to look for is one or two kids who need part time care or maybe even a small pool of people who need irregular childcare. Or maybe even a few people that I know or friends of friends of who need their houses cleaned or help with errands etc. I don't know how succesful I'll be at finding little jobs like that...but...I figure if I can just make enough to pay for Keegan's school that'll help quite a bit...and then I'll still have time to spend alone with Liam. The poor guy has never had that being our youngest little stair step kiddo. Anyway...My big idea that I keep dabbling with is starting an event planning business. I really enjoy organizing events and I think it would be a great career for me. I've located a program at our local cummunity college and am thinking about offering my serivces for VERY low rates (sometimes free) in order to build a sort of portfolio. Then once all three kids are in school I'll be ready to really try and get the business off the ground. I'd like to do everything from kid's parties to fundraisers to corporate events or weddings. Anyway...I guesss I'm just posting this for feedback...to network...and as accountability. WHen it comes to things like this I am an ideas person. I'm still polishing up my follow through skills. =)

So my first project in event planning is a fundraising dinner for House of Hope-Portland. I'm very excited to be able to help and also for the experience. The team already has a lot of the big work done...but now I get to step in and have fun too. =)

Well, I'd better run. Lots to try and get done before the boys get home tomorrow...but all I want to do is sit and relax. Ha ha!

Lots of love to all...Thanks for stopping by and checking in. Please continue to pray for Hadley's:

blood counts
blood culture (friday)
tumor's reaction to chemo (MRI august 28)
experience at Kinder-Jump Start (next week)

WIth HOPE
Angela

Friday, July 28, 2006 6pm

Hello,


Hadley's first day home has been 'uneventful'. She is feeling SO much better!!! She's really loving feeling back to her silly old self...AND having mom and dad all to her self as well. =) No fevers or other troubling signs. It makes me so sad that we have to face these battles...but, I can't help but feel blessed when we sort of 'breeze' through them. This was, by no means, easy. We had Gramma and Grammy and Pop Pop and Chellsee and auntie Manda all pull together to make sure that I could be at the hospital while Hadley needed me. It was very scarey...especially before we had any information etc. Bacteria in an immunosupressed child always is....but we got off SO easy. It probably sounds odd...but we are blessed.

Anyway...home infusion came to the house this morning. They delivered Had's antibiotics etc. We were expecting all the wonderfulness that comes along with IV meds. The IV pump...usually in our case we get one or two that will not hold a battery charge and have to b e plugged in at all times...The HUGE pole that has to be toted around the house...The obnoxious beeping...around the clock meds (no sleep for 10 days)...But NO! Again...we really got off easy!!! Hadley's antibiotic is a ONCE A DAY dose. It is in this little pressurized bubble in a bottle thing. ALl we do is clean her line (like usual) attach it it infuses over an hour....and when it's done we heparin lock the line...and we're done. She either hangs out on the couch or carries it around in her purse...or in some of her pants her pockets are big enough...and that's it. After we take it off and it's done infusing we throw it away! Crazy huh?!? No IV pump/pole/beeps/batteries...nothing. Just this quiet little bubble! Ha ha!

So please keep praying that this antibiotic continues to work on killing all the rest of that yucky baceria. Please pray that this Mommy can put aside her feelings of guilt. Everything is always MY fault you know. It can't just "happen". And please pray that the boys continue to have fun and stay safe at Gramma's. It hurts my heart that all three of the kids can't go and play there...it is summer and that IS what summer is for. With all of the things that I shouldn't have to face and do...no grandparent should have to contemplate having to change his/her granddaughter's central line dressing and administering chemo etc...so that they can have them come for a visit over summer break. But, that's one more thing to look forward to when we have this tumor stable and we've finished treatment!!! =) That day WILL come...I have HOPE and FAITH! I have to...or I'd be crazy by now.

Off to grab dinner.
Love to all...
Thankful for all of you who care so much!!!
Thank You for joining us in prayer for our little Super Hero!!!

The Mama


PS I have pics from the hospital I'll try to get uploaded tonight!

Thursday, July 27, 2006 4:30pm

Houston, We have lift off!!!

That's right. We're home!!! Hadley met all of her criteria...and we have her IV pump and meds set-up to be delivered to the house. Yay. Another 7-10 days of antibiotic at home and she should be as good as new. =)

Thank you so much for all the prayers, visits, guestbook messages, etc. I can't express enough how "lucky" we are that this turned out the way that it did. A bacterial infection in a chemo kid is just never a good thing. We are so "lucky" that this was not a resistant bacteria and that Hadley's body was able to help her fight it off. While we were in teh hospital I met a mom whose daughter was also there for a bacterial infection only her daughter's counts were MUCH lower than Hadley's. I don't even know their names but, please pray for them. They're in for a much longer stay and tougher fight than we had to go through.

There's nothing like a 3 day visit to your local peds Oncology floor to remind you that despite your current trials you are still better off than someone...and to be thankful for what you DO have. Not to say that we don't still mourn for our 'old normal' life and our 'old' Hadley...but...you know. For right now...for today...we are ok. Please pray for all the families who aren't or who have lost their sweet kiddos to this dreaded monster.

ALright...I have to go bathe Hadley and change her "tubies" dressing. =) She is SOOOOO happy to be home. And the boys are SOOOOOO happy to be at Gramma's! They sounded very pleased with themselves to bbeb such big boys to be on vacation without mommy. And, rumor has it that gramma's toys are WAY cooler than theirs. LOL!

Thank you for your prayers...please keep them coming. We have another blood culture a week from tomorrow. Please pray for that culture to be clear and for all fevers etc to STAY AWAY!!!

Also, we don't have to go to Seattle tomorrow. A huge-mongous thank you to our NP for really working her magic in an impossile sittuation and getting the ok to get us in here localy. Of course we'll also be writing a letter to hospital admin. because of the sittuation...but, that's a whole different talk show. =)

Love to all...
The Mama

PS...we're starting to plan Hadley's big number 6 party!!! There is a SuperGirl party set I found!!! =) Perfect for our little super hero! More details to come!!! =)

Wednesday, July 26, 2006 6:30pm

Hello from Doernbecher's,

Hadley is doing really well! No fever and no tylenol today!!! Yipee!!! So far her culture from the clinic yesterday hasn't grown anything. Her ANC is up quite a bit from 440 to 1100 (which is partially because of an elevated (for her anyway) White count b/c of the infection). But, it's still higher which means her body is fighting and that is all GREAT! She is tired and looks pretty pale and punky...but other than that she is doing well.

The nurse said (we'll ask the doc for confirmation though) that we can go home with the rest of the IV antibiotics (10 days worth) as soon as the sensitivity tests come back and they know exactly what antibiotic to give her. The sensitivity test is where they grow the bacteria in her in a dish in the lab. They then test it to see what antibiotics it responds to. So when we get that we 'should' be able to go home. I to even say it because there are so many stipulations. They are:

~she remains fever free
~her culture from yesterday doesn't grow anything
~she doesn't show any other symptoms of infection etc
~she remains hydrated on her own

Also they have to get home infusion services set up before they can discharge us...

So...optimistically (maybe even VERY optimistically) we could be home Thursday night (probably not SO likely-given the fact that they have to set up home care and have meds delivered) or Friday during the day. Either way...I'm going to have to call and cancel our neurology appt on Friday. There is just no way that I am dragging her all the way up to Seattle and back on Friday. I know that I 'should' so that we can get off this stupid seizure med...but, I just can't imagine an all day road trip with her poor little self...an IV pump...refrigerated IV antibiotics etc. Maybe I'll talk to our NP about having Neurology see her inpatient here tomorrow. It couldn't hurt to beg right? =/

Hadley has been roaming the halls pushing her IV pole with her pirate bandana on her head...carrying her purse filled with y lip gloss etc...and her Kidz Bop microphone. LOL. We went down to the gift shop to buy batteries...the elevator door opens...Hadley looks at the elevator full of people and, without missing a beat, says "Ahoy Mateys". This me up. I love her so much!

Anyway...I just wanted to let you all know that our little super is fighting her way through again! =)!!! Thank you SO much for your prayers. They really do carry us through!!! Also a big thanks to John Heck from Metro Church of Christ for coming and visiting and praying with us this morning. It's so nice to see friendly faces when we're 'stuck' here. It really breaks up the long days.

Alright...I'm off for now. Hadley really needs to go to sleep but instead she's being a pill...lol...I keep telling her to chill out..she is sick after all. Argh!

Keep Praying...God's always listening. =)

With Love and HOPE
The Mama



***I forgot to add that there is a group of Coast Guard Wives from across the country who are praying for Hadley every day at noon (in whatever time zone you are in). I just wanted to let you all know in case you wanted to join them. I know I have and will be joining them everyday...not only for Hadley but also to thank Him for all the wonderful, caring people he's put in our lives.**

Tuesday, July 25, 2006 4:30pm

I'm not sure where my update from this morning went...I was in such a hurry I probably did something stupid.

Anyway...

Hadley and I have checked in to Hotel OHSU (Doernbecher Children's Hospital). We have a gorgeous view of the courtyard from 10 north. Next time I pray for either cooler temps or AC I'm going to be a little more specific. Hadley's culture did grow bacteria. We're not sure yet exactly what the bacteria is or what it should respond to. But she's had a few doses of antibiotic now and seems to be perking up. Her temp is back down in the normal range...and she is a lot happier. We'll continue with IV antibiotics every 8 hours and hope and pray that this is not a "resistant" bacteria. **Sigh**

Keep those prayers coming folks. We were told to expect to be here for at least three days. We will repeat her ulture every day until we have a few days in a row that don't grow anything. Then we'll be able to bring home the rest of the IV antibiotics and an IV pump and finish up there. Thank Goodness. Otherwise we'd be ehre for at least 10 days!!! All of those timeframes, however, are dependent on everything going the way it's "supposed" to...and assuming that the bacteria is responding to the antibiotics she's alredy been given. Otherwise we'll have to 'start over'.

Anyway, please pray for our . She seems ok for the time being...but you just never know...things change so quickly...I'm just a really scared Mama.

I do have one funny little tidbit. I, the woman who apprently can't remember to pay the cable bill, was able to remember the name of the bacteria from the infection she had 2 years ago. Yes, it was 2 years ago and I rememberd it on the spot. But, half the time I can't remember my own phone number. The name of the bacteria, by the way, is Stenotrophomonasmaltophilia. Yeah...that's how scaery this is...that word is burned into my memory right there with her diagnosis date. Anyway...kind of a chuckle so you don't cry sort of moment.

Please pray that this bacteria responds and we get to come home soon. My sister and cousin Chellsee have the boys. My mother in law and mom and step dad are all on their way here. THe boys are going to go back to Idaho with Gramma and Grammy is gonna stay here to help me out with the hospital etc. It'll be so nice to have a 'relief sitter'. I got a hold of Brandon on the ship. He happened to be in the office... and his chief personaly drew up his emergency leave chit and walked him around the ship having it signed so he could leave right away. He should be here soon. I know I'ev already said it...but, I am so impressed with this ship so far. It'll be a different story once they're out to sea. But, it sure is nice of them to let him be here for us while he is in port.

Alright...Hadley's getting restless and wants to go to the playhouse disney site. I'll update as soon as I know anything.

With Love and HOPE
Angela

Monday, July 24, 2006 3:30pm

**Update 7pm**
Please continue to pray!!! Hadley woke up at 5:15 shaking and really 'goofy'. I took her temp...it was 105.2. Being the wonderful parent I am, I decided to try and stay calm...give Tylenol and wait a hal hour or so and see if it helped. I know that she will e admitted with that high a fever...anyway. It did slowly come down...and hour later it was around 102.5...now it's down to 101.8. Needless to say she'll be getting Tylenol every 4 hours around the clock. That fever came on not quite five hours after Tylenol at the hospital. Ugh. So...what I'm trying to say is she really isn't getting any better.

I didn't get a call about the urine dip before the clinic closed this evening...I'm a little worried about that...I'm still hanging on to hope that this is a UTI. And the clinic promised to call with any news. Ugh.

I'll update tomorrow. I think we're gonna try and hit Wal Mart first thing in the morning. Apparently they've been getting and selling out AC units every morning. I WILL snag one of those!!! I really don't care how much it costs at this point. =)~

Say big prayers ya'll...I hate seeing my girl like this. Even the boys are uncomfortable. Keegan has heat rash all over his belly. Poor guy...and he doesn't even have a fever.

G'night all!


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


Hello All,

Thanks for stopping by to check on our little super girl. Now...if you're out there reading this and you happen to have some kryptonite in your pocket...please...step AWAY from the computer. Our girl is not well. She is sicker than I've seen her in quite some time. She didn't want to sleep last night...wouldn't eat this morning...but other than that seemed fine. Today is lab day...so I drew her labs from her line...finished helping her get dressed etc. We loaded up in the car and drove downtown. By the time we got there she looked a little 'off' (about 25 mins.) By the time we got up to teh clinic she had goosebumps, was shivering uncontrollably, and felt sick to her stomach (never vomitted). We took her temp and it was 101.7. Just above the mystical 101. Ugh. So, we go to our room. They draw a blood culture...run her regular labs etc. She had to be straight cath'd for a urine culture/dip. SO far...no word. But she is obviously sick. I explained my desperate sittuation and they agreed to give her a 24 hour dose of IV antibiotics and let us wait the cultures out at home. If it's a UTI we have a script for Amoxicillin. If it's a blood infection...well...not so good. Hadley will be admitted for several days, at best, to get IV antibiotics and to be monitored. That admission could be a few days (3-5 maybe)and we could come home with several days of IV antibiotics etc...or it could wind up being a few weeks...or who knows how long...it's just one of those things that no cancer parent wnats to deal with. Scarey business. FOr the time being I'm staying sane operating on the assumption that this is a bladder infection and a whopping course of antibiotics at home will knock it out and we'll move on.

In the meantime...Hadley's only count on the rise is her White cells...which also points to an infection. Her ANC is a whopping 440. **Sigh**! Platelets back down to 97. Now with dropping counts...all signs pointing to an active infection...and a sickly little girl...we will not be starting chemo any time soon. ** Double Sigh**

I did hear from the trials nurse in Seattle and our Neuro Onc contacted the head of the study for us. Hadley will be allowed to restart the Lenalidomide but not at the full dose she's been on up to this point. I'm trying REALLY hard to not let my brain take off with this information. But this dose has been working...and I am terrified to reduce it. Especially if we can get her off the seizure meds that are contributing to her low counts. **SIgh*

I'm just in a really foul mood. I am so scared. I am so frustrated. I am so HOT. It's still warm here and we still have no AC. I've moved out of the too cheap to buy one category and into the I can't find one in stock anywhere category. I've got a sick little girl and it's a million degrees in our house. I feel like a real high quality parent right now.

Please pray with all your might...I don't think I can stand to face another chemo failure...I know that I will if I have to...and we will continue to step up and fight every battle laid before us...but...it's just so exhausting.

Please pray for Hadley's comfort. Poor dolly. I can't imagine how yucky she must feel.

Thanks again for stopping by...please continue to sign the guestbook.

With Love and HOPE,
Angela

Thursday, July 20, 2006 2:30pm

***Update...
After several calls to different offices etc. I finaly got a hold of someone who could/would help me. Hadley has an appointment with Neurology at Seattle Children's a week from tomorrow at 11 am. Thank Goodness!!! I was so tickled that someone was finaly able to help me I could have hugged the receptionist through the phone. =)

Now if we could just fast forward through the next month of weaning off one drug and starting a new one I'd be a happy camper. =)

Thanks for the thoughts ya'll...please sign the guestbook! =)...





Hi all,

Sorry to keep you hangin'. Brandon and I both FORGOT about Hadley's labs on Wednesday...I'm so used to doing them on Thursday...anyway...

We deffinitely have a downward trend. This is SO not good. Hadley hasn't had chemo for almost 3 weeks now. She was expected to be ready to start her next ccycle 2 1/2 weeks ago. And we STILL can't start because her bloodwork is not only too low...but is STILL dropping. What's puzzling is the rise in counbts and now the drop again. I'm so confused. What I do know is that I'd put money on the fact that her seizure medication is at least partly responsible. I'm telling you...I am so frustrated.

Her ANC is back down to 700. Her platelets are back down to 139. Her ANC needs to be 1000, platelets 100 before starting chemo again. Her platelets were 220 the last we checked...so there was a fairly steep drop there (at least for not knowing WHY they are dropping).

These counts in and of themselves aren't horrid. We aren't back in the scarey zone yet. What's scarey is that this cchemo regimen COULD fail if we have to repeatedly wait 4 times the length alotted between each cycle. Nevermind the fact that I don't even know if we can get 'kicked off' if her counts don't allow her to comply with the schedule. Grrrr.

If I sound frustated I am. If I sound scared I am. If I even sound a little desperate...I'm that too. I just need this trial to work SO bad. Hadley NEEDS this! I'll be darned if I'm gonna 'let' some off the wall counts keep this from succeeding. I wish this drug wasn't a phase 1 so that we could just start at a lower dose. But, unfortunately I don't think we're allowed to change the schedule. I just want to cry and scream at the same time! UGH!

OK, well I'm off to hunt down a pediatric nuerologist in our area. OHSU apparently isn't accepting new patients in the peds clinic. I'm still not quite sue what that's all about. We're in dire need of a simple neurologist at one of the best children's hospitals in the country and we can't even get on a darned waiting list. All we need is a new drug. BLAST!!!

Say a little prayer that my head doesn't start spinning...and that Hadley continues to feel ok despite her falling blood counts. Poor Dolly...and it's supposed to get up to 105 here this weekend. I think the weatherman must have missed the memo that we're in the NW and it's NOT supposed to get that hot this close to the Oregon Coast. We may have to try and escape somewhere...**note to self...air conditioning IS 'that' important in Portland**!

With Love and HOPE always (and NEVER admitting Defeat),
Angela

Tuesday, July 18, 2006 7:40pm

I'm home...it's good to be home...I missed my babies so much. I got to take a big nap with Hadley in Honey's chair this afternoon. then when we all woke up we went to a really cool park that's just a few minutes from our house. We had a lot of fun. I can't help but feel Honey around us now. Before her passing she was cocnfined to her wheelchair, her bed, her care home, the prison that her mind wasd becoming...now she is free again. I know that heaven will be amazing...but I can't help but think that she'll be looking down and enjoying all of her grandkids and great grandkids again. It still makes me sad...but I can also smile about it.

A huge thank you to cousin Sandra for letting me tay with you and for driving us all over creation to take care of everything that needed to be done etc. THANK YOU!




Hadley is still feeling ok. Brandon said that she was back to sleeping quite a bit while I was in California. They went to Seattle on Monday and her counts are too low to start chemo. Last Wednesday her ANC was finaly high enough but her platelets were about 6,000 too low. This time her platelets had shot up (Over 200,000)...but her ANC had dipped back down to 830. Go Figure. SO we're now working on week 3 of no chemo...frustration. I HATE to think that this regimen could fail b/c of wacky counts...and I can't help but blame part of this on her stupid seizure drug that she's not even supposed to be on in the first place. And NOW...we can't even find a flim flamming neurologist that is accepting new patients to see her and wean her off of it and start a new drug. I swear...everytime I think about it my lood pressure goes through the roof again. All becacuse someone who was supposed to be helping make my child well...was too busy and unconcerned to listen to me OR her oncologist. grrrr....

Anyway...we repeat labs tomorrow (here in Portland) and if her counts are finaly hugh enough we can start the drugs tomorrow night. Thank goodness. If we start tomorrow that would put her next MRI between the 16th and 23rd of August. Start those prayers now...=)!

Alright...Daddy is doing 'bubbles' but I have to go get supplies ready to change Hadley's broviac dressing etc. Please say a small little prayer for me. I am havign this bizarre shootimg pain on the right side of my back. I'm not quite sure what it is...but I don't really like it too much...and of course I STILL don't have a PCM. So if I want to be seen it's either Urgent Care...who tried to kill me aocuple weeks ago with the whole pancreatitis thing. Or the ER which isn't really warranted at this point. Urgh...when will I learn that I have to be taken carea of too?

Thanks for listening t me whine ya'll. I'll update with counts etc. tomorrow. I'm sure after a good night's sleep in my own bed my outlook will be much better. =)

Love to all...Always HOPE,
Angela

Thursday, July 13, 2006

Hi all,

Just a speedy update. I'm in California for Honey's services and preperations. The USCG Cutter Mellon's Command was gracious enough to grant leave to Brandon. He just reported a few weeks ago...and he had to take a day of leave for my surgery. So far this command has been VERY understanding and accomodating. I am SO, SO grateful that Brandon's command has been so wonderful.

Brandon is at home with all three kids. He is taking Hadley to Seattle on Monday. My cousin Chellsee is watching the boys for us. Our friend April watched all three kdis while Brandon was on his way home from Seattle and I was on the way to the airport. I had some really stressful moments there in the thick of the frenzy...but everyone really helped us pull it together. It is always so hard...families that are already 'in crisis' have other crisis' too. Adding to the daily extras we 'do' really just tip the scales to overload. Everyone really helped bring them back into check. Brandon, has been wonderful. Amazing even. He has taken from me...or at least tried...my stress and burdens of responsibilities at home. Everything. I was so stressd and he wasn't there...but all he kept saying was "don't worry...I'll take care of it". He really is always there to pick up the pieces wen I fall apart. Thank You Brandon! I love you!!!

Now, Hadley starts chemo on Monday night. For the time being she feels GREAT and has an over abundance of energy. She is back to her sweet, comical, entertaining little self. It makes me so happy to see her feeling so great. It'll be hard to see that fade away again...we'll deal with that when it's time though.

That's really all for now...I wanted to add "Honey's" obituary. She was such a wonderful woman and her obituary touches on a few of her highlights.



Honey's Obituary

Eva Dransfield
EVA DRANSFIELD Entered into July 12, 2006 in Clackamas, Oregon. Born November 19, 1919 in Alameda, CA, she was 86 years old. Before moving to Clackamas 6 years ago she lived in Chico and was previously a 35 year resident of Fremont. She was the area director for over 17 years for the Alameda County Special Olympics, was a member of St. Joseph's Church and was also very involved volunteering for the Sisters of the Holy Family. Beloved wife of the late John H. Dransfield Sr. Loving mother of Diane Marquardt of Chico, and John H. Dransfield Jr. of Oregon. Dearest sister of Mabel Pope of Nevada. Loving grandmother of Tami Bernard of Washington, Nick Marquardt of Oregon and Gary Marquardt of Nevada, and great grandmother of 7. Family and friends are invited to attend a Funeral Mass, Monday July 17, 2006 at 11:00 a.m. at Saint Joseph Parish, 43148 Mission Blvd., Fremont. Visitation will be Sunday, July 16, 2006 from 2:00 - 5:00 p.m. with a 4:00 p.m. vigil service held at Berge-Pappas-Smith Chapel of the Angels, 40842 Fremont Blvd., Fremont, CA 94538. Burial will take place at Chapel of the Chimes Hayward, CA.
Published in the ANG Newspapers on 7/15/2006.

Wednesday, July 12, 2006 5pm

Oy...

This is not going to be the most upbeat journal entry...so please feel free to move on now...

I am SO tired...exhausted...burned out, emotionaly and physically just BEAT.

We got a phone call last night around dinner time that my great grandmother's health had taken a rapid turn for the worse. She is in the active stages of dying. We spent a couple hours up there last night...and my mom has been there all day today. The kids and I have spent a few hours throughout the day. I feel bad not being there...but I can't make the kids stay there all day...ugh!

The kids and I went down to the hospital to drop off labs. It's absolutlely insane to me how huge of an effort that is for me. I fel like I needed a pain pill and a nap when we got back to the car...and I'm not usually a wimp.

Anyway, Hadley's ANC is finaly 1000 (high enough to start chemo again-by the skin of her teeth!!!). But, her platelets were only up to 94 (not quite high enough yet). So...instead of trying to trek up to Seattle with all three kids at 7 tomorrow am just to pick up the drugs and not start them until next week. I decided to reschedule her appt for monday (AGAIN). She can't start chemo anyway...and that is the entire point of the appt...so I figured I may as well wait. At the very least I'll be feeling more up to it.

I'm gonna sign off now...I'm just gonna whine more if I continue. Please pray for "Honey". Pray for Hadley...pray for this tired Mama...

Thanks ya'll
Angela

Monday, July 10, 2006 6:15pm

Hi all...80

We rescheduled Hadley's Seattle appointment for Thursday. I knew her counts would be too low to start chemo today and it didn't make any sense 'rushing' up there today. So, we did labs here at OHSU...Her ANC (infection fighting counts) went up a bit to 700. =) Her platelets dropped back down a bith though...not a ton...but, sort of puzzling I guess. Platelet count is back down to 81. Her White cell count is still low at 1.6. Things are looking up...but we're not quite there yet.

In order to start a new cycle of chemo her ANC (currently 700) has to be at least 1000. Her platelets (currently 81) have to be at least 100. We're close. BUT...the bummer is that her counts were actually relatively high (ANC around 2000) when we started this cycle. And obviously the lower her counts are when she starts the lower they will drop throughout. Starting a cycle at the bare minimum always makes me a bit anxious...but, as I said before as long as it's working...just as long as it's working...!!!

Anyway...I'm off to eat dinner. I'm healing pretty well. I can't decide wether I'm getting a 'bug' or if I'm just over tired or what...but I spent most of the day feeling pretty cruddy. Hopefully tomorrow will be a better day. My biggest discomfort was a horrid headache. I can't help but think about Hadley every time I have a headache and just wanna cry for her. Headaches are so cruddy...I hate them.

Alright...please continue to pray for all of our friends. Pray for big numbers on Thursday for Hadley! =)

With Love and HOPE
Angela

Friday, July 7, 2006 10am

Update Saturday 2:40 pm...

Just wanted to let you all know that I'm home and the surgery went fine. I'm only up for a minute...but just wanted to let you all know. I'm pretty sore...a bit more sore than I expected...so I'm really glad that my mom is here to help (and that Brandon was able to get the weekend off)!!!

Back to bed...thank god for pain meds!

Angela




~*~Please continue to pray for our little friend Morgan and her family!!!~*~


Hi ya'll,

Well Hadley's counts are finally stabilizing! YAY! Her platelets have even gone up more from 75 to 108. Her ANC (infection fighting blood counts) are holding steady at 500. Although her WBC dropped a tiny bit from 1.8 to 1.5. But, it seems that they've quit dropping...and this is a GREAT thing! Thank you for all the prayers. I feel a lot better knowing that her counts should be on the rise or at least stable now...BUT, I must admit that I'm pretty nervous for next cycle. No, REALLY nervous. The cycle after that is when she should be starting school...and it is obvious that she is going to miss some school 'right out of the gate'. Ugh.

Speaking of school...it has been brought to my attention that it doesn't matter that Hadley is transitioning from Pre School to Kindergarten. Our local school district HAS to comply with Hadley's current IEP until they draft a new one that I agree with and sign. What this means is that if the typical Kinder class isn't a good match for Hadley I can insist that they put her in a self contained or special ed day class until we come up with a better solution. PHEW!!!

We've had some great times and I'll update about those soon...today is busy, busy!

Brandon and I will leave for the hospital at about 12:30 for my gall bladder surgery. I am NOT nervous AT ALL. I am SO excited to finally have this darned thing out and actually feel better. I've been so sick and in so much pain for so long that I am just looking forward to the relief. I sure will appreciate any thoughts and prayers for a speedy recovery, though. =) Surgery is at 4 and I'll be home sometime tomorrow. My mom is here with the kids and Brandon has the weekend off. He got home last night around dinner time and has to leave again Sunday afternoon/evening. Thankfully my mom can stay as long as I need her to. =) I'm a lucky girl to have so much help. =)

Alright ya'll. I've got a bunch of stuff I want to get done before heading to the hospital. I need to change Hdaley's broviac dressing etc. and make sure that everything is ready for me to be 'out of commision'. Luckily I filled all meds etc before the holiday.

Thanks for stopping in to check on us!

The soon-to-be Gall Bladder Free,
Mama

Tuesday, July 4, 2006 Happy Independence Day!!!

**Update Wednesday evening**
I ask that all of you PLEASE say REALLY BIG prayers for o ne of our favorite little miracles. Miss Morgan had a VERY scarey day and is in the hospital. The doctors are currently trying to figure out what is going on. This sweet little girl needs some big, big prayers!!!

Morgan's Site


Thanks Ya'll!


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



Just a REALLY quick note as we're trying to get back out the door...

Hadley's counts from yesterday's labs were better and worse...Her platelets are back up to their original low of 75 (last monday they were 79-then Thursday they were 55). Her ANC, however, was down to 500 (it was 610 on Thursday). Blech. Not where you want your poor kiddo to be on such a 'festivity filled' weekend.

As long as the chemo is working on that stupid tumor we'll take any counts, I guess. I just hate to see Hadley so tired and feeling crumby. SHe seems a little better this morning...but she's just not herself. This weekend she didn't want to dance, swim, or even play most of the time. Then when she did she was so tired she was falling over a lot etc.

BUt, now I'm complaining...I'm just a sad mama...Hadley has such a personalilty, such a spark...adn when I see that dampened by all this it just really does a number on my heart.

Pray for better counts on Thursday!!!

Love to all...Be SAFE...Remember what we're celebrating!!!

With Love and HOPE,
Angela

Thursday, June 29, 2006 5:20 pm

Hadley's Blood COunts from today:

Hadley's Values~~~~~~~~Normal Values

White BC = 1.4~~~~6.0-17.5
Platelets = 55~~~~200-600
ANC = 610 ~~1,500-8,000


Houston, we have bacteria!!!

Yup, that's right. Apparently somewhere along the way Hadley's blood culture (after the 48 hour mark) was 'forgotten'. Our pediatrician got a phone call from infectious disease to make sure that Hadley's infection had been addressed. Hmmm...

So, at some point after 48 hours her culture grew a bacteria that is in the same family as tuberculosis. Nifty neato huh? So, now we are going back to the hospital (for the 3rd time this week) to draw another blood culture to see what is going on. I think the only reason she wasn't admitted this evening is because she's been fever free. Which, to me isn't that reassuring since she never ran a fever when she had a bacterial infection EXACTLY two years ago. (Happy Anniversary to Nate and LeeAnn by the way)...

Add this new tidbit of information to her beautiful little 610 ANC and her platelet count of 55 and you have a lovely little specimen of health **Rolling eyes**.

I think our pediatrician was a little worried by my relaxed reaction to the news...what am I gonna do start sobbing hystericaly...ha ha...anyway...so she reminded me that with Hadley's counts being low now even if this bacteria didnt' take over her body before it'd be more likely to now that her infection fighting capabilities are low.

So...please pray for our bug. She's such a little trooper...but she's really not feeling too well. Poor baby has a really upset stomach and is just tired as can be. I feel like a fairly well trained veteran at this 'war' by now...and even I am a little scared right now. Say big prayers ya'll.

Angela

Wednesday, June 28, 2006 11pm

I'm going to try and keep this short and 'sweet'. Hadley's blood counts are deffinitely not improving...and we can expect them to get worse before they get better.

Her ANC is 610
Her Platelet count is 55 (was 79 on Monday)

Obviously things could be worse, since we're expecting them to get worse. This is one of those times that I hate as a cancer parent. I hate limiting Hadley where fun and recreation is concerned. This is a holiday weekend. We have plans that I am not going to break...our family deserves a break...we rarely get to see our extended family...and Hadley deserves to have a little fun time. BUT, I am going to be a bit of a nervous wreck. Every cough, sneeze, sniffle I am going to notice...I can guaruntee that I WILL overreact every time she falls down and scrapes a knee. So, I guess I'm asking for prayers of protection for Hadley...and prayers for sanity for me. =) I also ask that however annoying and obnoxious I get about protecting her that everyone sort of takes the advice I am given so often...This too shall pass...try to bear with me. =)

We repeat labs on monday. Say a little prayer!

Angela





Hello Friends,

I mentioned a few months back that Hadley was being honored in a Peds Brain Tumor Fundraising effort. I promised the information and I have most of it now. A fellow Coast Guardsman is a member of a motorcycle club back east. They are participating in a fundraising event sponsored by the Pediatric Brain Tumor Foundation called "Ride For Kids". I have included some information on the event and the motorcycle club below...as well as a link to the ride for kids site. I ask that you help us raise money to fight these beasts. If you do not have the means to donate financially help us spread the word. Have a website? Post the info. for us. Have a few seconds while your doing dishes? Pray...for a cure...for a succesful event...and of course for Hadley and all of our friends and Angels families. Help us spread awareness in any way you can. A cure must be found and unfortunately...'cures' are very expensive to find. Please help us in any way you can!!! Help us not only for Hadley but for all of our many friends fighting pediatric brain tumors...and especially for all the angels who fought so hard...but could find a cure only in heaven.

Give me one more day while the club and I figure out the least complicated way to collect donations and I'll add that information here as well.

Thanks for reading this far!!! I know I must sound like a broken record...but, obviously this cause is not just 'close to home'...it is so much more than that. We currently have Hadley enrolled in a Phase 1 clinical trial. Research is so crucial...it's really all we have left to lean on...so please help give our family HOPE for Hadley's future here on earth.

THANK YOU!!!






http://newlondonmotorcycleclub.com/home.html


Sun. 20 August 06

NLMC sponsors Pediatric Brain Tumor Foundation Fundraiser

Coordinator: President

Group Leader Road Sergeant Tim Murray

Support: HONOR Members

Meet: 7:30am

Location: Dunkin Donuts, Rte 32, Uncasville

Leave: 8:00 AM (Sharp)

Destination: North Oxford, MA.

Registration: 8:00 AM to 9:45 AM

Cost: $ 35.00/bike

Note: Police escorted continuous run with food and activities at the end 91

Tuesday, June 27, 2006 0:32 AM CDT

Wednesday 3pm


Just popping in for a quick prayer request. Hadley's platlet count is low. Not crazy low or even transfusion low...yet. She's at 79...they typically transfuse around 50. So...until she recovers we are on a short 'tether' again. Blood counts at the hospital every 4 days. No bleeding type sittuations for Hadley right now. So, if you see me chasing her about and treating her like the 'boy in the bubble' just smile and know how much I love her and want to keep her safe from all those things that don't threaten the rest of us...but are quite 'scarey' for some kids/people. =/

We go for labs tomorrow at 11am...and again Monday morning. Typicaly her counts drop through at least the first half of her 1 week chemo break. So I'd realisticaly expect to see her counts dropping for another week and a half or so. Then if we make it back up without transfusion we can go back to our weekly labs (until she drops again).

All of this is rather odd since just yesterday I was thinking (after reading a red cross add) how lucky we are that Haldey's been on chemo for so long and has never had a chemo related transfusion (they were all in surgery). OY! Given Hadley's trends if she doesn't need to be transfused this cycle she probably will in the next cycle or two and then probably for the rest of the protocol. Her counts recover after each cycle but not to her baseline...so she starts each cycle a little lower than the last...and it's bound to catch up to her eventually.

I don't want this to seem like a big huge whine...it's not...I'm so thankful that we have the possibility of transfusion...and doctors who are really looking out for Hadley. She seems to be feeling well. A bit tired and 'end of cycle-ish'...but all things considered you could still say she's feeling good. So I am thankful. Thankful mostly that this chemo is working and that our girl is enjoying summer! =)

Just say a prayer that those counts come up! =)

Thanks Yall!
Angela


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

Monday, June 26, 2006 9:30am

Hi all..

I should be recieving the rest of the contents for my Country Bunny sample bags today or tomorrow. So, if you're interested in one and/or a catalog just send me an email!

Brandon reports to his new ship tomorrow (Tuesday). So far I don't think there is any concrete word as to when they're being deployed. The ship is apparently in a bad state of disrepair so it is quite likely that they will go straight to dry dock for repairs wit no patrol beforehand. No word yet on where they'll go to dry dock...but with the way things look it's safe to speculate that they'll stay in Seattle. So for the time being it looks like Brandon will be home weekends (except those that he has duty on). I'm not sure if they'll have rolling weekends or not...and what his workday schedule looks like. It all depends on the command...we should find out in the next several days.

Things seem to slowly be settling down...I'll try and update more regularly...no word from the School district yet...Not sure if that's good or bad. =/ I did find out that there are several possitions available at Portland Christian...the boy's prospective school. I really don't even care how much I make or how many hours I have...the tuition cut will help out so much that the pay will be an added bonus. =) I need to finish getting my application together and drop that off today or tomorrow morning. We're also going to to tour the school with the boys. =) They will probably go for a "trial run" in August while Hadley's in her Kindergarten preview.


Still rolling along. Hadley's still doing very welll. She hasn't been sleeping very well at night...but that could be the crazy heat. It's beautiful here...it's so nice to see the sun...but 102 in this humid of an atmosphere is just not too pleasant. Anyway...I wound up sick again Saturday morning. Very sick...lots of pain...went to the ER for bloodwork. My enzymes and everything were still within safe limits...so they let me come home when my nausea and pain were under control. I haven't been able to eat much of anything since then without vomitting. It's been fun. =/ Anyway...I've been able to keep down gatorade which is good...this heat and all that vomitting was not a good mix hydration wise. I was really afraid I'd wind up back in the hospital just to get rehydrated. If it's not one thing. Ha ha. So my surgery is scheduled for the 7th of July. I honestly can't wait. I really hope that I start feeling better after this. =)

Well, I need to get some chores done before the house heats up again. Hadley has labs today...thank goodness for her mavelous new tubies. =) And, we'll probably try and go see "cars". We've been wanting to take the kids...and well, movie theaters are air conditioned. =) It's not exactly in our new handy dandy budget...but, oh well! I'd rather be off budget a bit than have heat stroke. LOL...ok, so now I'm being dramatic.


Love to all!

Angela

Thursday, June 22, 2006 2:30PM

http://www.pbs.org/independentlens/lioninthehouse/index.htm

Forgot to add that there is an "independent Lens" special airing last night and tonight. It is called "a lion in the house" and is about 5 families battling childhood cancer. There is a website featuring the film...and also has some resources for caregivers, survivors, and also friends of families facing childhood cancer. I can't say that this will be 'thoughtless' entertainment. You probably won't be on teh edges of your seat laughing...etc. The heartbreaks are very real...very close to home if you take into account that every child in your life is at much risk as any child who has been diagnosed...but the joy is also very raw...very pure...very miraculous.

I didnt' mean to turn this into a sermon. I just get sort of hung up on shows like "I shouldn't be alive" and whatnot...shows and movies where the gore and fear is so extreme...and we consider this entertainment...but...the better part of our society wants to ignore the fact that every day CHILDREN are diagnosed with potentialy fatal diseases. Cancer being only "one" of those diseases.

Anyway...try and catch the show...or browse through the website...or find some way to help. Help find a cure, help out a cancer kid/family, help a cacncer support organization...whatever your abilities are there is a way to help. But...most importantly...hug your favorite cancer kid and their siblings! Then hug their parents/caregivers and let 'em know that you're "there" and then "BE there". =)

Sorry for the sermon...
Angela



Just a quick note. Hadley is doing very well. She's feeling great...other than her sleeping most of the day on Tuesday you'd never know that she'd even had surgery. =)

Her line is doing GREAT. She had a bath (unless you're in the medical field---then that actually reads SHOWER! hee hee) and a dressing change...and of course we flushed her line. It flushed AND drew blood amazingly well. It was a beautiful thing! =) We're quite pleased!!!

So...she continues on for another 2 weeks taking her chemo every night. I am still amazed that our little bugger swallows SEVEN capsules/pills EVERY night without a fuss. 5 are chemo...one is a stool softener...the last is her migraine med. She really does amaze me. =)

I have registered her for Kindergarten and a Kindergarten preview that is 2 weeks in mid-late August. I was told that, as I knew, there was no self contained special ed class at her school. But, when I left her monstrous Special Ed. file with them they told me that if the district and sped dept felt that Hadley needed a self contained sittuation they'd be in contact with me because there is a classroom in the DISTRICT just not at OUR school. Hmmm...we'll see. Ideally I'd "like" (read-terrified to...but would like HER to have the opportunity) to see her in a typical classroom for at least part of the day...with some strictly special ed support for part of the day. What I can tell you is that I really don't think that 3 hours of typical Kindergarten is going to cut it for our little princess. She just doesn't 'move' that fast. Anyway...I'll keep you up to date on how that little chapter of our lives is coming along. =)

I'm off to Wally World to pick up a few things. It's so nice to have a yard to take care of. The here and there small-ish costs are starting to add up...but it is sooo worth it. The kids love running in the grass and riding their bikes all over...and I have actually really enjoyed geting out and getting my hands dirty pulling weeds etc. The weather is gorgeous today, as it was yesterday...so I need to get going so I can get back out and enjoy it! =)

Love to all!!!
Angela

Monday, June 19, 2006 8:15pm

We're Home!!! We left the hospital at 10:30 this am...yay!!! We got to the hospital at 6:30...went into surgery on time at 7:30. Hadley was recovered and drinking juice and having her IV removed by 9:45. Woo Hoo. She has a SINGLE lumen broviac that appears to be in the right place. Keep your fingers crossed! =)

She doesn't seem to be in any pain...and is doing well. =)

Thanks for your thoughts and prayers!!!

Love to all,
The Mama







****Hadley will be in surgery placing a central line on Tuesday morning at 7:30...Please say a prayer!****



Hello All...


We had a busy day. I had my appt with teh surgeon this morning...then Hadley's Pre Op appt this afternoon. She is the first surgery of the day tomorrow. We have to be up at Doernbechers at 6:30am...her surgery time is 7:30 am. It is a day surgery...so as soon as she is awake and taking fluids well we can come home. So, if everything is on schedule and we don't get bumped by any emergent OR cases we should (knock on wood) be home or headed home by lunchtime! Yay!!! Surgery and then go straight home from the recovery room? Weird! No admission...no room on the floor...how very odd. =)

Anyway...everything else is still rolling along. STILL unpacking boxes and getting settled. It is such a proccess...even just finding the right home for each picture and knick knack (and I'm not even a chochkey kinda girl...so I don't have much of that...it's just weird finding a new home for everything).

I have a job lead that I'm pretty excited about. It's part time...only a few days a week....and it's at the preschool I was most seriously considering sending the boys to. Well, I should say the boys preschool is at the school offering hte job. THe school is actually Preschool-12th grade. Portland Christian is hiring an assistant for their librarian. So the location, number of hours, and environment are perfect. An added bonus is that I'd get 50ff the boy's tuition. Yay...say a prayer that if this was meant to be...that it will happen. =)

I had two really weird moments today. The first time was in my doctors appointment. We were reviewing my health history and the doc asked about my children...I said 3...he said 'healthy?'...I answered "yes" without even thinking. Then said...oh wait...no I guess not...my daughter has a brain tumor and is autistic. I'm not quite sure what was running through the doctor's mind...but he just stared at me for about a full minute. I felt stupid and sad all at once...I never really thought of Hadley as 'unhealthy' at leasat not on a daily or functional basis....and stupid because I sounded like I had no idea what I was talking about or how serious the whole sittuation is. Ugh...

The other was in Hadley's appointment. An NP from the surgery department was examining Hadley. She said to me (right in Hadley's face) "I'm trying to figure out what's going on with her face". She was talking about her facial droop and asymetry. I was SO angry. Mostly because Hadley was sitting right there. It's one thing to ask what caused the facial droop etc...it's quite another to phrase it like that. Shemay as well have asked what was wrong with her face. I don't know. It just didn't sit well with me. I wanted to say "she has a BT ...what do you think is wrong it?...it's not like she's otherwise healthy!..." Just weird to have those two moments within a few hours. I think that I may have been using Hadley's illness as a crutch for her for the past two years...but I haven't actually faced the reality of having a 'sick kid' for myself. I dunno...

Anyway...I'll keep you all updated. Love to all!
Angela

Friday, June 16, 2006 Gramma Fox's Birthday

http://www.GlitterMaker.com/ - Glitter Graphics



Hadley and Gramma at Hadley's 5th Birthday Party 09/05...



Happy Birthday Brenda...Sorry about publishing it on the web...I do realize you ARE a woman and may not want that advertised...But, hey...in my book that is too big an accomplishment to NOT be proud of it.

So, happy birthday...We Love You!!!

Angela, Brandon, and kiddos.

Tuesday, June 13, 2006 10pm

****Thursday****

Hi all...I just need to ask everyone for some love and support. It's weird what happens when you have a child (or loved one) that is so sick. All of those thngs that are the 'upsides' of loving such a fragile being...seeing the big stuff and small stuff for what they are. Choosing to not let the small stuff rule your life etc...at the oddest times those 'upsides' sort of 'give way' and all the stress and worry tries to take over. I don't know if it is because Hadley is doing well...so I feel free to worry about daily stuff now or what. But I am one stressed out mama. ALl of the pressure, stress, and worry is really starting to take over. Bills, paychecks, paperwork, unpacking, loneliness, 'single' parenting, anticipating Brandon's deployment, budgeting....it just goes on and on and I feel very overwhelmed.

I am very thankful that these are my worries right now. I would take any of this a million times over than have Hadley not feeling well etc...I guess just after all the worry over her etc. I don't have much left for the 'normal' stuff. Day to day struggles seem so exhausting after the stress of Hadley's issues.

I guess I'm asking for prayers...I know I should be throwing a party right now given Hadley's stable tumors...instead I'm stressed over stupid things that I know will be fine in a matter of time. Just bear with me. I needed to vent. Rest assured...I'll be fine...I just need a bit to get my feet back on the ground...I'm tired and I think everything is starting to catch up with me. =/

Angela






Hello All...

First and foremost...just in case you hadn't heard yet....Hadley's scan was STABLE. This scan marks 6 MONTHS of stable MRI's. Hip-Hip-Hooray!!! =)


Now...on to the regular Fox shtuff. Things have been crazy busy around here since we moved...Ill try to give a brief run down.

Our truck driver showed up a day early to load our stuff and drive it to Oregon...so we wound up leaving a day early too. We beat our stuff to Oregon by a few hours...and got to have it delivered just a few Hours after we arrived! Unheard of in a military move!!! We were soooo lucky!!! Here is the truck loading up in California...


Saying goodbye to friends and family is never easy...here's a picture of Hadley and Miss Gina on her last day of school. Although I think I had a harder time saying goodbye to Hadley's teachers than she did...ugh...

And one of Papa and the kids on our way through Sacramento.

Yes Hadley WAS in a wicked mood...and yes she did INSIST on her hair being that way. =)

Hadley and I went to Kindergarten round up night at her new school in Oregon...she got to ride the bus (without Mom) and LOVED it...you can't see her in the pic but, I assure you she is in the second window back! =)




Miss Lola Michelle joined our family our first week here. COngrats to Mike and Chellsee!!! She is a DOLL...thanks for letting us invade your hospital room to come see her!!!




We got to go to cousin Colin's last baseball game of the season...=) He go to pitch an inning and did AWESOME!!! Way to go Colin!!!




Then...we got to go to the Grand Floral Parade!!! We had awesome seats (thanks to Paul and Linda, The Wagner's and everyone else who got up so early and staked out our territory!!!) It was pretty awesome...the kids loved it.





Here's a shot of Hadley and Cole coloring with sidewalk chalk before the parade started...they were born only a week apart! =)


Hadley has been VERY tired and slept through most of the parade...poor dolly...


This was our favorite float (aside from the float saluting our troops...).



Well, that's a short rundown of our last 3 weeks or so...add in there a TON of unpacking...a wicked case of pancreatits and a hopsital stay...a sick Hadley...a broviac falling completely out...an all day trip to Seattle for an MRI...and a husband/daddy who is still in California during hte week and you pretty much have it all summed up. Ha ha...=)

It's really not as bad as it sounds...or maybe I'm just too exhausted to notice. =)


Hadley started her new cycle of Lenalidomide (chemo) tonight. Her blood work looked good so we got the go-ahead to start again. =)

She is scheduled for surgery on Tuesday (the 20th) to replace her Broviac. So, we'll do labs after it is placed while we're at the hospital. =)

I think that's about it. I would like to ask you to pray for the Duckworth family as they mourn the loss of their sweet Jacob. www.caringbridge.org/fl/jacob Jacob is now cured and pain free...but his family is left broken hearted. Please send your love and prayers to this family!!!

Good night all...
With Love and HOPE
Angela


*** I forgot a few little things. First...turn up your volume...and scroll up for our new tune. =) It's another good one...a little more upbeat for our celebration!!! =) This song reminds me sooo much of Hadley and her journey...and how she lives. =) "Reaching for something in the distance...so close you can almost taste it...Today is where your book begins the rest is still unwritten. Release your inhibitions...feel the rain on your skin...noone else can speak the words on your lips."

Second. I am a new rep. with Country Bunny bath and body products. I know most of you that know me in person are wondering why I chose this company. I am neither a huge fan of 'country cuteness' or bunnies for that matter...(not that I'm evil or anything...I'm just not a 'cutesy' kind of girl). I chose country bunny because my friend Angela is a repp with them and I tried and LOVE their products. I am addicted, yes addicted, to their oatmeal milk and honey scent. It is scrumptious. But more than their scents their products are WONDERFUL. I immediately felt a difference in my skin...and saw a difference in Liam's skin. He has very sensitive dry skin. Anyhow...CB's products are DEA free (an agent found in nearly all bath products that is currently in lab tests substantiating it's link to cancer and looking at how the body absorbs it.) Anyway...just wanted to let you know...you can follow the link to my site in the banner above (just click on it)...or if you'd prefer a catalog and possibly a sample or two just email me and I'd be happy to send those as well! Thanks!

I am also going to be closing my Discovery Toys site. I will be staying with the company so if you'd like to place an order or get a catalog all you have to do is email me. The site is just getting too expensive (it's costing me money to sell toys...silly). =) Alright all...that's all for now!

Have a great Wednesday!

Monday, June 12, 2006 10pm

YA HOOOOO-eee!

ANOTHER STABLE, Yes, STABLE scan! This makes SIX months...I hardly know what to do with myself!!!

Thank You, Thank You, Thank You for all the prayers and well wishes! =)

I'll try and update more tomorrow. Right now I need a nap...no, I need hibernation...but, a nap will have to do. =)

With Love and Hope,
Mama Fox (and Family)

Sunday, June 11, 2006 4:30pm

Hello Friends,

Just another speedy update. We finally have internet connection at home, though...Yay! I have a LOT of updating to do. Mostly fun stuff...lots of pics etc...it'll have to wait just a scosh longer though. =)

PLEASE, PLEASE Pray for Miss Hadley and our family tomorrow. We found out Friday afternoon that Had's MRI is tomorrow (monday). We check in at 1:45pm. As usual we'll see our Nuero Onc immediately following the scan for a check up, results, and to pick up our chemo drugs for the month (assuming the MRI looks good). Please pray for our girl...her safety, comfort, etc. Please pray for her miracle. We know that God will provide for us...please pray for us to remember this and to trust Him. Life may throw more at us than WE can handle...but, never more than HE can. No matter what the results tomorrow God will provide for our girl...the unknown is just SO scarey.

Alright...I have to check out for now. I'll update late tomorrow night. We probably won't be home until around 9 or 10 Oregon time...so be patient ya'll =).

Thanks for hanging in there with us. Life is slowly settling down. =)

Angela


PS Don't forget our email addy has changed: FoxiFamily@yahoo.com

Monday, June 5, 2006 4pm

Hi all! Another quick update from a 'borrowed' computer. We have an appointment to have our internet set up on Sunday afternoon...weird huh...a Sunday?!? Anyway...Things have been crazy around here. Everything seemed to be going smoothly and then...well...not so much...

I wasn't; feeling very well when I updated last but thought it was my usual weirdness...I convinced my mother in law that she really could fly home Thursday so she did. About the time she was boarding the plane I was hanging out in the ER waiting room for 2 hours with my WONDERFUL friend Shauna. I was in a ton of pain and felt horrible. Turns out I had Pancreatitis and a bad case of gallstones. Ugh. After some pain meds, rest, no food or drink and a LOT of Zofran I was feeling a tad better. They had to go in and do a minor endoscopic surgery to relieve pressure etc. I was released from the hospital around noon on Saturday. I'm supposed to hear back today or tomorrow from a surgeon to remove my gallbladder. Fun, huh?!? Ha ha. Oh,.,.well...could be worse...MUCH worse. So...I'm on the mend. Brandon (who is still in Claifornia for several weeks) got nervous and flew up for the weekend...my mom and step dad had planned on visiting and wound up coming a day early...Shauna and Linda McDonald saved the day until family started getting here. Everyone really pulled together and took care of everything...A huge thank you to all of you. Shauna, Linda and Troy...you are true friends. Irreplacable...Thank You!!! Mom and everyone elses...thank you!!! Who knows what I would have done without you. Brenda...nest time you have a mommay gut instinct...well, no, you're not my mom...but...well...you have my permission to get pushy and listen to that gut. =) Thanks for all the help moving. You were a hugemongous help...Thank You!!!

Alright...so today...I decided that now that everything was calm I would brave the grocery store with all 3 kids. I was going to stop off and borrow Shauna's computer to pay bills etc...we were about 3 blocks away when Hadley started vomitting. I had just flushed her broviac and she was complaining that it hurt etc. So after several phone calls we ended up at Doernbecher's in the clinic...to make a long story short she was examined...it was determined that the Broviac had to come out and that it was likely infected...the NP left the room to make phone calls...Hadley stood up from the playroom play doh table and said "uh oh"...her Broviac fell out on the floor. She looked at it and said "Uh oh...where's your tubies...I dunno...where'd your tubies go?"...OY!!! So, we went and drew labs...we're waiting for the blood culture to come back...keeping our finger's crossed for no bacteria and relishing our tubie free time. =/ Until our next blood draw anyway...oy. =/

No word on the MRI yet...I'll keep you updated. Please pray for us...I feel a little...well, "under fire"...trying to not feel overwhelmed...I'll let you know how it goes. Ha ha.

Keep all our friends in your prayers! Friends..please know that we're thinking of and prayiong for you even if we're not 'around' right now! =/

With HOPE
Angela

Wednesday, May 31, 2006 Noon

Hi all...

A really quick note to let you all know that we made it here safely etc. We are slowly but surely getting settled in...emphasis on SLOWLY. =) So far, despite all the rain,. we're loving being back in the NW. =)

Hadley is doing well. The move has her fairtly stressed out...but she's doing well. THe highlight of her week was the Kindergarten roundup at her new school last night. She got to ride the big kid school bus without me. She was elated...I was terrified...but, stepped out of my comfort zone and let her take that step. She did AWESOME!!! I sat in the gym woth all the other parents tryting to hold back tears...I'm so excited to see such a huge milestone come...one that we, at times, wondered if we would see. She is so amazing...I'm so proud of her. KINDERGARTEN...where on earth does the time go?

Alright...well...I have to get moving...I'm updating from my sister's office...I still ahvent' gotten our computer set up etc. Don't worry if it's a few more days. I should find out today exactly when the MRI is...It should be next week though. I'll let ya'll know.

Love to all...Pray for our friends...

Mama Fox
Proud Mama and Coastie Wife =)

Monday, May 22, 2006 9:40pm

Hello All,

Just one last note before the movers come and take away my computer. Ha ha. =) They'll be here Tues/Wed and load our things on the truck Thursday. We are very excited for this move...but, this last week...all the hard things about moving have sort of hit me square in the face. It's been a rough week for me. Saying Goodbye is never easy. This is only the second duty station we've left...so we're still fairly new at this. But at each duty station I have made at least on very close friend. This time around...that friend and I have seen each other through some pretty scarey things and some pretty wonderful little miracles. Our friendship won't end here...but, this chapter of it is over. We wil no longer be neighbors, babysitters, relief during hospital stays. We won't borrow a crock pot or a punch bowl...or a plunger (hee hee...ewww). When plans fall through I won't be able to run all over town at the last minute creating a "well planned" birthday party for a sweet little 3 year old boy who was never aware that anything went 'wrong' (if I didn't know it before then...I knew then that you were a true pal). We'll have to mail hospital care packages that include trial size mouthwash instead of tooth paste/brush...=) Because we are our only friends that understand that. But this is all ok. We knew when our friendship started that it would eventually be proximity challeneged. =) It's the life we live...and I don't think either of us would change a thing about it. I will never be able to THANK YOU enough for being such a wonderful friend.


Sisters
We are sisters - bound not by blood but by unity of spirit. We share many of the same experiences, hopes and fears. You carry some of my thoughts and I, some of yours.

You understand that I have a chest labeled "special memories" that grows heavier as it's moved from assignment to assignment. I understand your box marked "curtains" which contains seven different sets, each of which will only fit one window in all of the US and Europe. You know what it's like to plant a tree, realizing that someone else will sample its fruit and enjoy its shade. I know that you pause while hanging a picture in base housing to hear for a moment the echoing footsteps of the families that preceded you. (I also know that you never write in your address book in ink!)

To us, home is not so much a geographic location as it is a place in our hearts. At the same time, the evening news is more than a 30 minute blitz of information; it is often the compass that directs our lives. I have stood in your shoes and you in mine on docks, piers, flight lines and in terminals of every description around the world, waving goodbye and whispering a silent prayer. To us the words "Support Our Troops" are more than a t-shirt or bumper sticker logo. We wear a yellow ribbon around our hearts EVERY DAY, because we know that every day a military family is separated by time and distance while the military member stands watch at Freedom's door.

We come from all walks of life. We are homemakers, workers, professionals and in our numbers are those who also serve our country on active duty or in the reserves. We are different, and yet we are the same. Sometimes I see your face in my mirror. Sometime you dream my dreams. I am honored to count myself among you!


Author Unknown



Thank You Mama Keane. Some days you helped pull me through...some days ya made me laugh...and some days we fought like only sisters can. Mobile to Mobile...=*)







ANd now for our regularly scheduled update:

Hadley is doing well. She has a special blood draw in the city tomorrow morning. I'm a tad worried because her line hasn't been drawing again. I haven't been able to get a drop of blood for the last 5 or 6 days. Say a little "bloody Broviac" prayer for us ok?!? If it doesn't draw and they can get a peripheral vein and let her come home that's fine...what I'm worried about is if they cna't get it to draw then what? Are they going to want to scan or Xray...look for clots...remove it?!? Oy...Just say a little prayer...we need it to draw. =/

Hadley has seemed a bit confused the past few days. At first I thought that it was just that things are a little hectic so she's sort of off in her own little world. But she has done some odd things...and just looked 'off'. THe other night she looked like she was having an absent seizure or was in a trance or something and was walking straight for the hot BBQ. I had to scream accross the lawn for Brandon to stop her. He looked at me like I was crazy...she knows it's hot...but she was just out of it. Today she got out of the car and instead of walking up to the sidewalk and toward her school she started walking the opposite direction aways from the school and into the parking lot. When I grabbed her and asked her what she was doing/where she was going she didn't answer me...and didnt' even look confused...jsut blank. It's odd. I can't even really descirbe it. It does have me a bit worried though. Maybe she's just really tired. =/?

Other than that life is good...busy..but, normal busy...moving busy. We like normall stuff. =)

I've GOT to get to bed. You probably won't hear from me again until we're in Oregon.

Please continue to pray for all of our friends. Angel Timmy's Family, Angel Emerald's family, Angel Ryan's Family....Genna (in the hospital), Morgan (going in for surgery Thursday), and all ofo ur little firends who are fighting so hard!

Not long until Had's MRI...please start praying for that as well!!!


Alright Ya'll,
Always Love...
Angela

Friday, May 19, 2006 8am

Just a quick note...We're still here preparing for our move. I've been sick for the better part of the last week. I think I am finally better today. I think it no coincidence that I finally gave in and spent a good portion of yesterday on the couch. I feel much better today! Thank Goodness!!!

Today I am heading to the Grocery store for all of our weekend festivities. Saturday during the day Brandon has to work. Saturday evening we're BBQ'ing with friends and family. Sunday I am hostessing Angela K's baby shower. Monday is our last day to scurry about and prepare for the movers. Tuesday morning the packers will be here AND Hadley has to be down at the hospital at 8am for a special blood draw. The movers have us scheduled for packing on Tues and Wed and load up on Thursday. We really just don't have that much stuff. =) I forsee us spending an entire night and day in a house full of boxes and mattresses on the floor. =) Oh well. Semper Paratus right? Life is an adventure. =)

It appears that Brandon's deployment schedule is completely up in the air right now. It sounds like they are still deffinitely deploying we just don't know when or where to. So, he may be 'home' for the remainder of the summer afterall. =)

Hadley is doing well. She had a few days of yuckiness...but seems fine now. She's stayed home from school 2 of her last 5 days. I think she's ready to go back now. =)

I never got her lab results. The clinic is hectic right now. There are nurses covering for 'covering' nurses etc. So, I'm assuming that no news is good news. We'll stop in on Tuesday and make sure though.

Well, I'd better run! Lots to do...first of which is geting Hadley to school in a semi timely fashion. =)

PS...I hadn't heard this Jewel song in FOREVER...it holds so much persoanl meaning now. I wonder if Jewel would ever consider performning it at a benefit for Cancer Kids? If she truly believes that "wherever there is a man who has no voice...there we shall go singing..." how much truer could that be for 'our' kids? Maybe even moreso for children with Autism. Hmmm. Anyone out there friends with Jewel or her agent? =)

Alrighty...
If you don't hear from me don't worry...=)

The Mama of the "Never Broken" Hadley
Angela

Monday, May 15, 2006

Happy Birthday Daddy! We Love You!!! =)





I wanted to make sure that EVERYONE knows about our BBQ this Saturday evening. Everyone is invited...in all my running around and craziness I know that I've likely overlooked some people...not on purpose...my brain is just not up to par these days. =) SO...here is the information. If you could RSVP to give us an idea about how much food etc to have it'd help us out (we can't exactly have a ton of food left over since the movers are coming a few days later...ha ha)...But, even if you don't RSVP but find that you can come...Just come on over...we'll make it work and we'd love to see everyone! =)



Saturday May 20th

5pm-Whenever =)

Our House---Outside BBQing

You Bring: Yourself, Your Beer of Choice, Your Meat of Choice

We'll Provide: Sides, Drinks, Buns, Condiments, BBQ's, Dessert (a hmmmm--are you listening Mama Keane?!?) etc.

I think I covered everything...Hope to see you "all" there! =)

Please bear with me...you know how shocked you all are that we're moving so quickly?...well...think about what my brain is doing right now...LOL! So if I seem a little scattered...I am...ha ha! =)

Angela

Sunday, May 14, 2006 Happy Mother's Day....

Just a quick note...Our email address is goingto be changing with the move. So, I set up a Yahoo account to at least use during the transition. There is a link below...but, here it is: FoxiFamily@yahoo.com

Have a great week ya'll. I'll update after blood counts on Tuesday. =)





HAPPY MOTHER'S DAY to Mom (grammy), Mom Fox (gramma), and all of our grammas and great grammas!!!!!!

Another happy mother's day to all of you moms out there!


This morning moms from all corners of the US are opening little handmade cards and gifts from their school aged children...being brought breakfast in bed...and maybe even sneaking out for some "alone" time. I am SO blessed...I'm doing all of those things today. Brandon got up and made me a huge breakfast and brought it to me in bed...along with a handful of cards. I have three beautiful...happy...unique...and AMAZING children. This morning I got to read a card that EACH of them had made at school for me. Three little cards...made just for me by my three favorite kiddos. Hadley dictated to her teachers "I making cookies...I making chocolate chip cookies" and drew a picture. She also said "Mommy Beautiful". =) This girl of mine is SO good for the ego!!! =) I love her to pieces. Keegan's card exhibited a LOT of very hard work. He WROTE (himself-with a few 'dots' to help him keep it in the right place) "I love You MOM...Happy Mother's Day...Love, Keegan". It is beautiful...He was beaming with pride. I am so very proud of him. Liam made a card at school as well. He put two little handprints on the inside. It's amazing to me because I look at all three kids and they are growing up SO fast...but Liam's hands...on paper...are still so little. He's such a smart little guy...sosmetimes I forget that he really is still such a 'baby'. =)

All three of my kids are amazing to me. They are all so different and carry different strengths. I am so proud of them...But, the one thing I am the proudest of is that the most consistent compliment I get about them is that they are so LOVING! I am very proud of them for that. I like to think that in some small way I have helped to teach them that...or at least helped to preserve that innocence, love and general goodness that I believe all people are born with.

As I was sitting at the table eating my "breakfast in bed" =) Hadley ran to the bookshelf in the playroom and came running back with a book. She sat down at the head of the table and started 'reading' me "Mommies are for counting stars". You may not understand why that is so special but to me it is nothing short of a miracle. This is the FIRST time Hadley has really let us know that she understood a holiday...that she 'got' what was going on and why. She has been taught to say "Happy Mother's Day"...she said it all last week as they were working on it at school...but today she let me know that she REALLY 'got it'. Thank you Hadley Bug...Mama loves you SOOOO much.

Over the past 2 years many people have asked me "how on earth do you do this with three small kids?". Honestly, yes...life is VERY busy but, I wouldn't be able to do or get through any of this without all three of my little monkeys. Like, I said they are all so diffferent...and they all fill a very important role in our family. I am so thankful for them. Even on the days when nothing makes them happy...and I would actually be praying for the rapture if I weren't in such a grumpy mood. =) I've 'seen' too many angels 'born' in the last 2 years to not give thanks for my children at least once a day. Their pressence here on earth truly is a gift.

Thanks for stopping by...Happy Mother's Day...Hug your kiddos today!!! Let them know how important they are to you!

With Love and HOPE
Angela
One Proud Mama

Friday, May 12, 2006 Happy Military Spouses Appreciation Day!

In honor of ALL Military Spouses out there...representing all branches of the service...

THANK YOU!!!


The military wife is a special individual. When she was a girl, her dreams were bold, as bold as her fine, free gaze; And every gift of grace and mind was hers in her younger days. When she was a girl, a golden girl, with a soul as fine as fire. She could outshine the brightest jewel that a rich man's love might buy her. Yes hers could have been the glittering path through a careless, carefree life. But she fell in love with an soldier, so she became a military wife.


Away from the home of her childhood she marched at her husband's side. For she chose a wide and winding road when she became a bride. And sometimes the road was a hard one, so different from what she had planned; And sometimes she wept for the home she had left as she lay in a foreign land; And sometimes her steps would grow weary as she followed the drum and the fife; But she set about making the world her home because she was a military wife.

She learned to build a hearth for them wherever her man was sent; And she knelt to plant a garden every time he pitched their tent. Yes, she always planted a garden though she never saw it grow, For she knew before the flowers came that she would have to go. But she left each garden gladly though it cut her like a knife, For she hoped it might bring some comfort to another military wife.

To the hardships in her married life she brought one simple truth, A promise that once was spoken in the ancient words of Ruth: "Wherever you go, I will go. Wherever you lodge, I will lodge; Thy people shall be my people and thy God shall be my God." She shared his joys and sorrows as they made their way through life, For she was proud to love a soldier and to be a military wife.

She bore the weight of worrying what fate might hold in store; And the wordless fear of waiting when her soldier went to war; And the nights that she spent fearing that her waiting was in vain; And the pain of wanting someone she might never hold again. But she bore his children gladly through uncertainty and strife, And they never heard her crying for she was a military wife.

She raised a military family with the faith her love had taught her; And she gave the pride she had inside to her son and to her daughter; And she taught them to love freedom and to know what it was worth, As they helped her plant her gardens in the corners of the earth. And she never wished for better than the road they marched through life. Because she was as much a soldier as she was a military wife.

Author Unknown

Semper Paratus,
Angela Fox CO
Group Fox
=)

Tuesday, May 9, 2006

New Song Time. Turn up the volume and check out the new song. Grab a tissue! It's from The Wild Thornberry's Movie...the kids love this movie....and were watching it in the car...this song came on and I nearly got in a wreck b/c I started crying...OY! Enjoy!

Just a REALLY quick update this morning...

Keegan's appt went great. It's amazing to me how easy his appts are in comparison to Hadley's and even Liam's. Anyway...he is beyond his age in milestones etc. He's doing great and is just as healthy as can be. He weighs 35lbs and was JUST barely shy of 3'5". He got two shots. The first is mosty for Hadley's protection. He got the second Hep. A. And then an MMR booster...because our ped just thinks that it'd be beneficial and safer to do it now than wait a year until he starts Kinder. With all the cases right now...and them only being a plane ride away...we're not taking any chances!!!

I have a huge prayer request. I can't give any details because this page is so public...but there is a whole community of loving christians grieving for a sweet baby girl who passed away earlier this week. Please pray for all the people that will miss her here on earth...and rejoice at the same time that she is with God in heaven...a perfect little angel!

Thanks Ya'll!
Angela




Hello...

Sorry for the delay...It’s been busy, busy around here. Although, I'm nmot quite sre why I think I can get away with that as an excuse since it's always busy in this house...although right now it is busier than usual. LOL! Nothing too exciting to report. =) Before I move on to family stuff I’ll tell you about Hadley’s “pre cycle” appt today.

Brandon had to take her because I ingeniously double booked myself. Apparently I thought it possible to be in San Francisco meeting with her Oncologist and in Alameda with her Education Team at the same exact time. Ha ha! So, I went to the IEP meeting and Brandon went to the Oncology check up.

Hadley officially weighs 59.5 lbs and is 3'9". HOLY COW! I can’t even believe it. AND she’s going to be 6...SIX...in just 4 months. Legally, Hadley will not even require a car seat anymore. How on earth can that be? Anyway, she looks good, sounds good, feels good...and her ANC is above 1000...so we’re starting cycle #3 on Thursday evening. Please continue to pray for this drug to work it’s “magic” on this tumor. =)

Hadley’s broviac is doing well. It was bleeding a bit throughout the day Sunday. I was concerned it had come out of place so I changed the dressing and checked on it before trying to flush it. It not only flushed well but drew blood wonderfully. Not quite sure what that’s all about...but apparently something happened that caused it to bleed externally and wiggle into just the right place internally. So, thank you for the prayers. The site is still healing...and the stitches are really irritating the skin...but, it looks pretty good and is working great! YAY!!!

Alright...so...Hadley’s IEP meeting. We wrote and addendum to her current IEP (which is do to be re-written in October). This addendum basically gives the recommendation for Hadley’s placement for Kindergarten in September. If we were here she would be going to a special ed classroom that is sort of the middle of the road...not the highest functioning kids, but not the non verbal kids either. The whole goal of that placement is to mainstream. They would focus on what each child needed in order to mainstream. BUT, we’re not going to be here...so, the recommendation is:

A Kindergarten Classroom that consists of:
modified core curriculum
social facilitation
language enrichment
language models
early literacy
small/large group instruction
structure/behavior support

Basically, Hadley can’t hang with a Kinder curriculum so it will need to be modified in order for her to learn and she will need a lot of extra instruction and support. More or less if she is placed in a typical Kindergarten room she will need a full time aide. I don’t know how common that is in Reynold’s SD...but I don’t see that happening easily. But, I’m not gonna stress about it right now. I’ll worry about it later...like in 3 weeks when I go to register her. =/ In the meantime I have to fax a bunch of stuff to the Early childhood people in Multnomah County to get her Extended School year stuff in place. Hopefully registering with them for ESY will help our transition to preschool go a little smoother. =)

There is a little something in the works back east. The ride for kids is a nationwide fundraiser for the Peds BT foundation. Motorcycle Clubs across the country participate. A fellow Coast Guardsman is a member of one of those clubs back east and is planning on honoring Hadley with the donations he collects. Keep an eye out for the rest of the information in the next few days. The ride is in August...so I’ll figure out the details with he and his wife and post the info in the next few days...so keep an eye out! =)


The boys are doing well. Keegan has a well child visit tomorrow morning and then are headed to the Zoo with Gramma and Grampa Fox. Hadley will be in school all day so I’ll be at home by myself. I’m making a list tonight and hope to get a LOT done during my alone time tomorrow. =)

Ok...on to other more mundane stuff. Our yard sale actually went a lot better than I expected it to. We had one last year and the turnout was less than desirable. But, this year I’d say it was worth the work. =) It’s always a good thing to feel like you haven’t wasted a ton of time. =)

Well, I need to help get the kiddos bathed and in bed. They are sleepy little monkeys and could use to be in bed a little early tonight. =) Please continue to pray for all of our friends. If you could stop by Angel Timmy’s page and leave a not for his family. They, especially, need our thoughts and prayers and I have not been as faithful as I should in letting them know they are in my prayers. =/
www.carignbridge.org/nj/timmyp

Also please pray for my grandma Diane. Her health is not so great right now and tehy were forced to come home from a much anticipated vacation early. Please say a few prayers for she and my Papa Mike.

Thanks for checkin’ in Ya’ll (please don’t forget to let us know you were here!)
Angela


PS. Hadley put in a request for a “diamond ring” last night. She very bluntly said “I want diamond Ring”...and then said “You wanna go pick it up?” I asked her where I was supposed to get it and she said..”it’s on the counter.” Hmmm...so...if anyone wants to know what Hadley REALLY wants it’s a diamond ring...LOL!!!(and only Hadley could get away with that...=)

Thursday, May 4, 2006

Please Check out the following link...a few items to help fund peds brain tumor research and support: BrainTumorLife.com You HAVE to check out the PMS shirt! =) I ordered one for myself! =)

Hello,


Before anything else…Hadley’s ANC from Tuesday’s labs was 1100. So, overall she’s only dropped about 1400 ‘points’ through this cycle. I expect next week’s labs to be the lowest for the cycle and they shouldn’t be bad either. =) Overall this regimen seems to be fairly easy on Hadley. She has become an expert capsule ‘swallower’ (still 5 capsules EVERY night). Like I said she’s pretty tired but, she hasn’t even needed her nausea meds. I really hope that this continues to work. It seems too good to be true right now. =)

I think I have recovered from my near heart attack during Hadley’s “escape” earlier this week. I’m still not convinced, however, that she should be in a typical classroom. I got her afternoon teacher’s progress report this afternoon. There is NO way she is ready. Sending her to typical Kindergarten right now would be setting her up for total failure…she is so far behind that there is no way she could learn with the other kids. According to Hadley’s current progress report she only recognizes and names TWO letters of the alphabet consistently. TWO. Hadley can count only three objects using one to one ratio (counting out ten raisins etc) independently and consistently. I don’t care what Kindergarten curriculum you look at that is not acceptable. I know that Hadley is in Special Education so her ‘entry evaluation’ expectations will be different…but, I don’t agree with setting her up like that. I don’t want her to be “that” kid. I was recently at a party where a group of moms was talking about how bad they felt for a certain teacher because she’d had several kids who wound up being pulled out of her class and placed in SpEd programs. They all felt bad for her and all the extra work she had to put in because of it. I will NOT be the parent of “the burden kid”. We really have no idea what kind of school situation we are moving to. Please pray for Hadley and for the team of educators and therapists on the other end of this move. My heart is very heavy…I really don’t like feeling my child is being given up on and just tossed ‘into the mix’. I want very much for her to be in an integrated setting…just not until she is ready and the time is right. I don’t feel like now is that time. I don’t feel that she would thrive academically and beyond that I actually fear for her safety.

I think we have actually decided on a school for the boys. I had a hard time getting a hold of schools while we were in Portland so I didn’t get to actually look at a single one. But, I have been in contact with Portland Christian’s pre school and I think that we are going to enroll the boys there. Liam has to be out of diapers before he can start…so, now I’m determined. I’m hoping to put them in for 2 full days a week. It’s about the same amount of time that Keegan is going now…just in two days instead of one. It’ll be easier for me to get the things done that I need to etc. Let’s face it…I may think I’m super mom (yeah right) but I am going to need time to get stuff done that I normally do while Brandon stays home with the kids. Like grocery shopping and stuff. I’d never get a decent grocery trip completed with 3 or even 2 of the kids in tow. I am just NOT that cool! =) Anyway…I think it’ll be good sanity time for all of us. =)

Ok…so on to other things. Hadley’s line *should* be ok. It looks like (from our NP’s interpretation of the OR report and the follow up X ray) the line was right where it should be and then at some point between placement and the recovery room (before the X ray) it slipped out a bit from the right atrium into the right brachiocephalic vein. It should work ok…it’s just going to be a bit “fussy”. We may wind up doing some imaging to check for a clot just in case (at least before using it to infuse anyway)…but it really doesn’t seem like that is the problem. We’ll make it work…we always do.

Everything is crazy around here. The house is all torn up…the kid’s rooms are all switched around. I’ve found myself doing odd things just to be doing something. Why? I have no idea. It’s not like I need to create things to do…I have plenty to get done. Oh well. Our yard sale is still a go for Saturday. Angela K and I have both already sold a few things out of our garages just while preparing. Ok, I’ve sold a few things…Angela has sold a LOT. =) I’m hoping I do well…as the money I make will be our Ikea find for the new house! =) Yee haw! Wish us luck and good weather….it’s supposed to be gorgeous!

Tomorrow night is Hadley’s last night of taking meds for this cycle. It was supposed to be tonight but, we accidentally started a day late. OOPS! The next week looks like this:

Saturday:
Yard Sale
Gramma and Grampa Fox here (pm)

Monday:
Labs

Tuesday:
Appt with Dr Banerjee
IEP meeting (school)

Wednesday:
Keegan Check Up
Gramma and Grampa Home (PM)

Thursday:
Start Cycle #3 of Lenalidomide (chemo)

I still have lots of phone calls to make and such for the move and getting everything lined up for a smooth transition…Lots of cleaning and organizing to do yet…but, other than that…not much going on here. =)

Please keep ALL of our friends in your prayers.

Always Love,
Angela (and the crew of Coast Guard Station Fox)
Semper Paratus (always ready)

Tuesday, May 2, 2006 1:15pm

Hello,

We're still here trudging along. =) It's amazing how much clutter you accumulate in a relatively short period of time. It's taking a long time to sift through everything and cut back to what we need and our highest priority 'wants'. I have this theory that if I can get rid of as much clutter in my life as possible things will be simpler. We'll see. =)

Anyhow...Hadley is doing good. She's tired. She's pretty much going through the same thing she was at this point in her last 'cycle'. She's really tired...going to school wears her out so much that she comes home and wants to sleep from the time she walks in the door until about 7pm...most nights she eats, takes meds, gets showered and is back in bed in an hour and a half or so. Last night she just didn’t' want to fall back asleep...so she was up late and then didn't want to get up this morning. She looked pretty worn out...but, I made her get up and go to school.

We are already having some problems with her line. It isn't wanting to 'draw'. Apparently it's placement is a little less than optimal...it isn’t' quite where it 'should' be. It is flushing fine (things are going in great) but, it doesn't want to let us draw blood. Which is rather inconvenient since that is at least 95f the reason we have int in the first place. Anyway...I guess what is happening is that the tip of the catheter is likely up against or hitting a wall of the vein it is in. We were able to get about 4cc's of blood this morning after about an hour of changing position and trying and retrying. UGH! About half way through the madness I finally called our Onc clinic and they helped me out quite a bit. Anyway, we're going to try smaller syringes and see if the pressure change helps out. Although I don't see how on earth that could be for poor Hadley's vein. Oh well. So, please say a little prayer for our girl. I don't care how it happens but, could you pray that the goofy line 'gets into' a better position without replacing the line. It makes my head hurt even thinking about trying to get that scheduled and done in the midst of everything else.

Hadley pulled a very scarey stunt yesterday. The boys and I went and picked her up at school at 3:15. It's just right around the corner so we walk over and get her and then walk home. We got home a little after 3:20. We walked in the front door...I set down Had's stuff and slipped my shoes off, the boys plopped down in front of cartoons and I went potty. I usually just leave the door open (sorry for the Too Much Info) so that I can at least hear what is going on...that is if they don't follow me back there and jabber at me the whole time. Anyway...I was in the bathroom for no more than 3 minutes...when I came out the back door was open...Liam was in the driveway...Keegan was still watching cartoons and Hadley was GONE. My heart dropped...I ran out the door (barefoot) screaming her name. Someone walking by said they thought they saw her walking down toward the corner so I took off that way yelling for her (knowing that she probably wouldn't answer) and yelling at Liam to keep up. I got several blocks down and didn’t' see her so I ran back home thinking that maybe she had gone around the back and around to the house. She wasn't there...then the phone rang. It was our Armed Forces YMCA. Both the boys go to Preschool there and Hadley has been there a hand full of times. She wanted to go and play in their playhouse so she walked herself down there and walked right up to the door and let herself in. OMG!!! So of course they called as soon as they saw her. Thank God they knew who she was etc. I took off back down the block and by the time I got there I was crying. I asked her if she was supposed to leave the house by herself and she said "Uh huh" and shook her head yes. It went on like this for a few minutes. She wasn't getting it...and I didn’t' understand why not. She knows not to go outside by herself.. She hasn't done it in a long time. I couldn't seem to get her to understand that I was upset with her and scared and that she'd done something naughty and dangerous. She was just happy as a clam and seemed completely unaffected. Then she looked at me with the same happy little face that she'd had through it all and said "Don't worry Mommy". **SIGH** Now I am terrified to send her to school in Portland. Hadley's team of educators and therapists here are wanting to recommend a typical classroom with a lot of supports (an aide, social supports, and therapy). I was really excited about this up until yesterday. I was just envisioning her walking right out the front door of her school and on to Glisan (on of the busiest streets in NE Portland). Sometimes I just have no idea what to do for her. The sheer terror of fighting for her life for the last 2 years and then losing her in a situation like yesterday's just sends me into an immediate panic attack. UGH!

OK, so, now that I've spilled the beans on that...and I will undoubtedly have CPS on my doorstep by dinnertime...I'll fill you in on the rest of our lives.

Everything is rolling along for our move. We have our military housing pre inspection on May 16th. Then our final check out is on June 1st (Brandon will do that one after we've left). In other news...Brandon's new ship needs him to report early. They need him to meet them on patrol so he'll be deployed immediately after leaving here. We're hoping that he'll get a few days of leave granted to stop in Portland...but, we won't know for a bit about that. If he doesn't get that we will probably only see him for a day and half or two between May 25th and August 15th or so. Our visit will be while he is on his way from Alameda to Seattle. Our 'ship life' is starting so much sooner than I anticipated. I guess it didn't really seem like a huge deal until now. Pray for our kiddos. I think Liam is going to have the hardest time with it. They will adjust in time. Just pray for that adjustment time. This first deployment (3 months with his time in Alameda after we move) will be the hardest (but, the shortest). There is a book I'm going to get for the kids. I think it's called "While Daddy's at Sea"...or something like that anyway. I hope that will help them understand. =/

Alright...well we're having a yard sale on Saturday...I have a ton to get done just for that. I'll post Hadley's blood counts at the top of this post when we get them back.

Please pray for all of our friends!!! Especially Angel Timmy's family!

Monday, May 1, 2006 9:25am

PLEASE pray for our little friend Morgan (www.morganfaith.com) she's had a scarey 24 hours or so. Say big prayers for her please!


Now, I was able to make two of the Broviac Tops for Hadley this weekend. Here is the one she wore to school today! =)



Hadley clapping for her Tubies Shirt!




I reccomend not using the satiny ribbons...while they are very cute...they have to be double knotted or they slip open constantly.

I left my original post about the Broviac Tops below with the link to the instructions etc. Just in case anyone missed it. =) I'll try and take another picture of the top when Hadley is not wearing it so you can see the opening etc. =)

I also found out this morning that the mom who designed these is actually on my Peds Brain Tumor Support Board. Pretty Cool! =)

Always Love Always HOPE,
Angela





Hi all...I have something that would be a HUGE help if anyone is able or willing. =) As you know (see pictures below) Hadley now has a double lumen broviac. For the most part this is not a big deal. But, it can be uncomfortable. Not painful...but...the clamps on the lumens and stuff seem like they can be bothersome and irritating up against Had's chest. Tonight I taped some gauze to her chest under teh llumen clamps to give her some padding (especially for sleeping). Anyway...there is a shirt or undershirt that the mom of a cancer kid designed that I think would help Hadley out tremendously! I think she would be a lot more comfortable without all the extra bulk and tape. She hates extra tape...because it always has to come OFF eventually...in this case every night or every other night. =(

If you can help us out with making a few of these you'd be my BEST friend! I think I can handle making them...but probably won;t have time to make more than maybe one or two before we move in a few weeks. Here is a link to the pattern: Hannah's Broviac Top
It doesn't have to be fancy or have the extra embellishments shown if we could have a few just for undershirts at first I'd be a happy mom. If you can help us please email me. HadleysMama@yahoo.com I can mail you a few of her older tops or tank tops. She wears a 6/7 right now.

Thanks so much ya'll! =)

Always Love
Angela

Friday, April 28, 2006 8pm

Hi all...I have something that would be a HUGE help if anyone is able or willing. =) As you know (see pictures below) Hadley now has a double lumen broviac. For the most part this is not a big deal. But, it can be uncomfortable. Not painful...but...the clamps on the lumens and stuff seem like they can be bothersome and irritating up against Had's chest. Tonight I taped some gauze to her chest under teh llumen clamps to give her some padding (especially for sleeping). Anyway...there is a shirt or undershirt that the mom of a cancer kid designed that I think would help Hadley out tremendously! I think she would be a lot more comfortable without all the extra bulk and tape. She hates extra tape...because it always has to come OFF eventually...in this case every night or every other night. =(

If you can help us out with making a few of these you'd be my BEST friend! I think I can handle making them...but probably won;t have time to make more than maybe one or two before we move in a few weeks. Here is a link to the pattern: Hannah's Broviac Top
It doesn't have to be fancy or have the extra embellishments shown if we could have a few just for undershirts at first I'd be a happy mom. If you can help us please email me. HadleysMama@yahoo.com I can mail you a few of her older tops or tank tops. She wears a 6/7 right now.

Thanks so much ya'll! =)

Always Love
Angela


We're Home...we got home about an hour ago. Everything went good. Hadley is such a champ. =) I'm so proud of her.

She went in a little later than expected...but, she was so patient waiting for her turn. Then we got upstairs to pre op and she told every doctor and nurse (anyone in scrubs) "I want Bubble Gum...I LOVE nigh night". Bubble Gum is her anesthesia mask flavor of choice. I'm a little worried about Hadley's future...I may have to be the parent who volunteers the 'Say No to Drugs' capmapign so she I know that she really gets the message. Oy. =) Anyway...she did great in surgery. When she came out the Pediatric recovery room was full (lots of short cases today) so she had to recover in with the adults. Let me just tell you that I thought Hadley had a habit of 'stealing the show' when she was in with all the other kids. This girl was spoiled rotten. Even before she woke up all the nurses were coming by her bed asking if she was awake yet...then when she did they came by and said things like "is she as cute awake as she is asleep?" Ha ha...if they only knew. =) We were there for a while waiting ofr our room to be cleaned and by the time we l;eft she'd met every nurse and had even charmed them out of a popsicle, orange jello, and a resse's PB egg. They all found it humorous that she insisted on keeping her oxygen maks on because tehy put her bubble gum maks on it. =) A few of the nurses came by quite concerend b/c she'd been awake for an hour and had her oxygen on...we had to explain that she was fine...she just likes it. They couldnt' believe it. Goofy girly.

So, Hadley came out of surgery with a double lumen Broviac...meaning there are two tubes instead of one. We're not quite sure how or why that happened...especially since they asked me before she went in...but, oh well. I guess we'll adopt the 'more is better' theory where tubies are concerned. Ha ha. She is very happy to have her PICC line out of her arm. She's still getting used to having the Broviac on her chest...but she's doing very well.

When we got home Brandon opened the back door for the boys and they were standing there screaming for me (giggle)...and Keegan said "Mommy...is Hadley still alive? Is she still standing up in her bones?" I'm not quite sure where that came from...but it made me very sad. He's never asked me if anyone else was still alive. I don't even know that he really knows what he said...but, it made me sad. I hope that he understands us and trusts us that we will tell him if anything bad is happening or is going to happen to Hadley. Oy...

Well, here are a few pics of Hadley and her 'beautiful tubies' and a few of the boys from the other day. =)

Have a great weekend ya'll. =)



Hadley's beautiful new tubies. =)





The shirt says it all...this kid really DOES do all his own stunts! =)





Typical Keegan and Liam...standing on a popcorn tin...minor head injuries looming in the background...Keegan trying to turn it into a dance move and Liam trying to find a way to make it MORE dangerous. Ugh! =)





I asked Keegan to write his name and he wrote "FOX"...I praised him on his great job and asked him if he could write HIS name too...he said "Well, yeah I think so...but the K's are really tricky mom". =) He's so grown up!

Always Love,
Angela

Wednesday, April 26, 2006 4pm

Please keep Hadley in your prayers for Friday. She is having a minor surgery to place her "broviac". This is a central line that allows us to draw blood, administer meds etc without Hadley being poked. As I have said before Hadley's veins are just a big mess...or little mess if you take into consideration the size of her veins. =) Anyway...this is a good thing. Hadley loves her "tubies". In fact when we were having the dressing on her PICC line changed on Tuesday she told the nurse "They're beauuuutiful Tubies...I LOVE tubies". Hadley knows that her tubies make life easier for her and I am thankful for that. We try to talk about her tubies in a possitive light so that she knows that they are a good thing. I know that a broviac is kind of a "shock" or would be "traumatic" for a parent of a healthy child to think about. We've had a lot of people approach Hadley with a sort of sympathetic and pity filled tone and ask her "what happened" or appologize that she has to have her tubies. Like I said we are really trying hard to keep this possitive. So far Hadley 'gets it'. Please, when you see Hadley help s accentuate the possitive and CONGRATULATE her on her "Beautiful Tubies". Thanks so much for the prayers! We know that they carry us through.

I'll update when we get home on Saturday (although there is a CHANCE we may be home Friday evening-yee haw).

Angela

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

Hello,

I had a whole big long update typed out and somehow lost if before I got it posted. oh well...It was longwinded and retrospective. Stuff that most people don't want to sit and read anyway. Hadley's 2 year diagnosis anniversary was last Saturday. It was a hard day...I think it always will be. April 22nd, 2004...Oy!

My ramblings could be boiled down to this: This journey has been hard. We've seen a lot of trials. We've been scared. Scared to lose Hadley, scared that she will survive in a very damdaged body, scared that the boys are being robbed, scared taht our marriage isn't strong enough to see this through, scared that we will face all of this and not learn anything. Living in constant fear isn't really living. It's been tough. The week before Hadley's l ast MRI was difficult for me. It was a "technically rough" week. Hadley ws 'ok' it was just a long week with lots of time at/in the hospital lots of extra crud. Long story short...I finaly got real with God about where 'we' stood. It wasn't a good place. In admiting to Him and myself that I really didnt' trust Him with Hadley I freed myself. I finaly felt free of that debilitating fear I'd ben carrying around for 2 years. For the next week, leading up to Hadley's MRI, I was totaly at peace. I was actually surprised at how 'unbothered' I was by it. As you all know it was a good MRI. We've come a LONG way. =)

Our friend Troy Wagner is the Preacher at Central Church of Christ. Last sunday I sat in church thinking about where I had been exactly 2 years prior. Sitting beside Hadley's bed in the ICU. Terrified yet numb...feeling like I knew this was coming but, feeling blindsided all the same. I was in a bad mood and wa really hoping that the lesson would be encouraging. Central is closing after their services next Sunday...so I didn't expect it to be an uplifting time. Oddly enough, it was. There is a lot of love there...and while the lesson undoubtedly served another purpose (given the church's present circumstance) it spoke to me on a different level...well, it was the same lesson...just a different setting I guess. Troy's lesson was on the story of the fiery furnace from the book of Daniel. I felt it was very fitting for where I am at in my own journey right now. Here is a little blurb from Troy's 'corner' of the bulletin:
"I never look forward to the trial. I don't long for struggles because I am unsure of what they will bring. But one thing I do know, what I see as a fiery furnace might just be the thing God uses to set me free. None of us long to be uncomfortable, uncertain, or uninformed about our futuree, but we should be able to trust in God to deliver us from what holds us hostage. We were not meant to be bound, Christ came so that we might be set free. (Luke 4:18) And because we have our HOPE secure in Christ each of us should be able to join in saying..."
The God whome we serve is able to save us. He will rescue us from your power. But even if he doesn't, you can be sure that we will never serve other gods.
Daniel 3:17-18

It has taken 2 years but I can finally see the 'good' again...I can look back on memories and see mostly good memories. Memories that aren't attached to Hadley's tumor...and even some that are that are 'happy'. I can sit in a baby shower exactly 2 years after Hadley's diagnosis and hearing the words "this isn't NECCESARILY a death sentence"...and truly celebrate the anticipated arrival of a sweet little baby named Lola. I didn't cry over wether or not Hadley would ever be a mother or over the 'perfection' we lost so early on in her life with ehr autism and tumor diagnosis. I trust that the God who created my daughter will care for her better than anybody else would be capable. His communication with Hadley is not limited by her delays and differences...and (don't lock me up) I happen to believe that He takes full advantage of that. =) He loves her more than I could fathom...and that alone is unfathomable. =)

I will never believe that God inflicts or allows children to be aflicted with terrible illness to teach us a lesson...but, I do believe that He is capable of using our trials for His glory. Life still isn't always easy...but I feel free to just be Hadley's mama again...I don't need to worry about every little thing. I trust that God will deliver us from our trials...and even if He doesn't I will trust that those trials will be used for His glory.

Thank you for loving and supporting us during these past two years. Thank you for praying for us when weren't strong enough or were too angry to pray. Thank you for letting our girl into your hearts. She is so beautifully imperfect...how could you NOT love her?

Always Love! Always HOPE!
Angela (and crew)

Tuesday, April 25, 2006 9:30am PST

Here are a few pictures of Hadley's new room:







A few of the boy's new room:





And here's one of Hadley telling everyone about baby Lola...or as she said (baby Gorilla?!? Ha ha...)



Hi all,

We're home. It was quite a trip. As I said we did find a house...we signed our rental agreement, paid our move in fees, and even got the keys and painted the kid's rooms. I'll put up some pics of that later. Both Hadley and the boys have castles on their walls now. They turned out pretty cute. We used Behr's Disney colors and I can tell you first hand that "Pretty In Pink" is VERY pink. LOL. But, Hadley LOVES it so I'm a happy mama. She sat in her empty room belting out "A dream is a wish your heart makes...when you're fast asleep..." The boys are equally happy with their room and are demanding a dragon on their walls to go with the castle. I have always lacked ability in the artsy dept so I think they may have to settle for Ikea's stuffed dragon suspended with fishing line from the ceiling. LOL! That, I can do. =)

A HUGE thank you to our buds Troy, Shauna, April and kiddos for helping us out. We were in paint, masking tape, and restless children up to our eyeballs and they came to our rescue at a moments notice. And then took us out to dinner to boot. Cole (their son who is the same age as Hadley) even provided great entertainment during dinner. Old Chicago plays great tunes...what'sa boy to do but shake his boom boom...right?!? Thank you also for letting us crash at your place, feeding us, sharing your toys, and your 'breathing room'. We love ya'll!

Thank you (times a million) to Grammy, Pop Pop, Grammy Christie and Pop Pop David for watching the kids for us through various appts and even while Brandon and I went to grab a quick pizza for my birthday. For having us over for Easter dinner, and for the birthday cake that not only caught me by surprise but...well, I must be experiencing the onset of Ahlzeimer's bcause ya'll were almost through the first chorus of 'happy birthday' before I realized who the cake was for. DUH! I'm old. =)

Alright. I will update more later...I have to go wrap Hadley's arm in Press N Seal (the stuff is amazing) and shower her. She's already late for school...but I figured I ought to let her sleep in after this busy week.

We're home safe and sound...more later...

Angela (and crew)

Tuesday, April 18, 2006 6:15pm

Hi all!

We are still just dancing around over Hadley's last scan! I still can't believe that she's had 3 consecutive stable scans. We'd gotten so 'used to' bad news. Anyway...thank you for all the well wishes and prayers. I am still quite teary about it, actually. Everytime I think about it (especially while sitting in church on Easter morning) I can't help but think and be hopeful that this is finally our big miracle. This could be the path to Hadley's cancer free life. I am overjoyed and SO thankful! Thank you for 'being here' with us in our time of celebration! =)

Now...we're still in Portland. Things are going well. We arrived after a safe and uneventful 12 hours in the car on Friday. We pulled out of Alameda, Ca at 5:15am on friday and arrived ihn Portland, Oregon at 4pm. The kids did AWESOME!!! They were great in the car the whole way! They actually slepty for more than half the trip. =)

We have found a house! I had called ahead and made an appt to see it on Saturday evening. We loved the house, loved the landlords, loved the neighborhood. We drove by a few of the prospective rentals and immediately knew that they weren't going to work. Then we went to view 'our' house' and knew that this was the one. The landlords offered us the house and are even wanting us to help pick out the new carpet etc. =) The kids will have a nice big playroom and a lot of yard to play in etc. We're pretty happy. =)

Hadley's school stuff is on it's way through the proccess. It should be relatively smooth since she's had consistent services and IEP's etc. We're hoping to start out with Extrended School Year as soon as we get up here this summer. Our "home" elementary is only 4 blocks from our house...that is a relief...It's important to me to be near her in case she needs me.

Anyway, we are going to be moving a little bit earlier than we expected. Between school and landlords and doctors/MRI's etc...it's going to be hard to pick a 'good' time. So, we're really just picking a date and doing it and we'll have to trust that everything else will work out. =) ha ha. So we'll be 'taking possesion' of our new home by June 1st. Our landlords really wnat the house occupied (not sitting empty) ASAP, we need to get up here before school gets out to get Hadley set up for next school year and Extended school year. So, we're just going to have to hope that the doctor stuff works out. =)

So, June 1st is our day. That is just over a month away. Holy Cow Man! We'll probably drive up on Sunday and Monday of Labpr day weekend. Brandon will be staying behind in Alameda and working for a few weeks. And will join us closer to his Seattle report date.

Well, this got longer than I expected...I have to run. Thank You for the birthday wishes! I'm officialy 'oldER'. =)

Hadley got her ears pierced! She was so brave and is very happy with herself. She's wnated them so bad...and she is just so proud of them. Her favorite phrase these days is "I love your earings" or "You love my earings?". She's had a hard time being away form home and out of routine and away from school etc. But, she's hanging in there. We did labs today...I'll let you know when we get results.

Thanks for checking in on us!
With Love and HOPE
Angela and Family

Thursday, April 13, 2006 7:40pm

http://www.GlitterMaker.com/ - Glitter Graphics


Crank up the tunes...put your party hat on and SHAKE YOUR BOOM BOOM!!! We have another "Stable" scan. Actually "stable or better". The edema and swelling and fuzzy areas of the tumor were less enhanced and smaller. The tumor itself was "at least stable" (we're waiting for the final radiology report for measurments).

Thank You for all your thoughts and prayers! We are so thankful that our run of good scans has continued. =)

We'll leave bright and early in the morning for Portland. Hadley will start chemo tomorrow night....and we'll do labs in Portland on Tuesday. Hadley's Broviac placement is scheduled for the Friday after we get home ( a week from Monday). I'll update when I can. We're gonna be busy busy. =) So, no news is good news this week! =)

With Love and HOPE
Angela (and the rest of the Fox Crew)

Tuesday, April 11, 2006 7pm

Please Pray for our Papa B. He has cancer again. I am so sad and scared. Please pray that he can beat this again. Please pray for his emotional wellness...he lost both his son (my father) and his wife to cancer last year. I just feel so horrible for him. He, and the entire family need your prayers! Thank You!




We're back from urgent care. Liam has yet another random diagnosis. Adenovirus with conjunctivitus of the eye lids. The whites of his eyes are fine but his eye lids are swollen and he's complaining of pain etc. I am so frustrated...and so many things. I just want my 'healthy' little boy to be healthy. So, no chest Xray...same old song and dance...it's a virus...kids get viruses etc. His lungs sounded clear...his respirations were on the high side of mormal (with albuterol and flovent, mind you). Bleck...I just really don't feel like I hsould have to fight so hard for something so simple. It's an X ray! Ok...I'm done complaining. Please pray that this doesn't turn into Bronchitis or Pneumonia...AGAIN. I'm calling our pediatrician first thing in the morning and telling her that I want the chest Xray (we're at the end of the two weeks she promised me)...we were in urgent care...I wnat to do it...and hope that she'll order it without seeing us so we can get it done early tomorrow. Wish me luck.

In case you missed it Hadley's counts are great again. Her ANC is back up to 2550. Yay for our Supergirl! These steep dives and climbs are baffling (at least to me).

Please continue to pray for our Angel Timmy's family. He passed away early this morning. www.caringbridge.org/nj/timmyp

Alright I'm off. I have a ton of stuff to get done. I have no business taking time for even this update. Ugh. I'll update again on Thursday night after the MRI. Keep those prayers up! =)

Always LOVE
Angela

Sunday, April 9, 2006 5pm

Hadley's blood counts are in. Our amazing girl has rebounded amazinhgly well yet again! Her ANC last Wednesday was 950. Her ANC from the labs we drew last night was 2,550! Way to go girl!!!

I'll be taking Liam to urgent care as soon as Brandon gets home from work. He is a mess AGAIN. I am just totaly at a loss. I don't know what to do for him anymore. He JUST fnished 9 days of Zithromax on Sunday. Last night he woke up screaming around midnight. He seemed scared and thrashed in bed for a few hours. He started running a low grade fever (about 99.5-100 axillary) so I gave him some Children's Motrin. Before giving the mortin I noticed he was breathing really hard...I gave him the motrin so it culd start working on the fever...then I checked his vitals. His heart was racing he was breathing fast etc. I gave him his inhaler and it didn't seem to help a whole lot. I was ready to take him to the ER when he finally calmed down a bit...looked at the bedside table and said "light off Mama...". So I laid there and llistened to hos breathingand kept my hand over his chest to feel his heart and he did ok. Yesterday he had some gunk in his eyes...i thought it was kind of weird and feared another bout of pink eye. But, the pink never came...today, he has had a steady stream of large amounts sof discharge coming from his eyes all day. It is seeping out of both the inside and outside corners of his eys. He keeps pointing to his eyes and nose and telling me that his eyes hurt. Poor buddy. I figure he has to have a sinus infection. I have never seen this much eye discahrge before...and I've seen a lot of cases of pink eye! The whites of his eyes look fine. I just don't know what to do. You would think that just having finished an antibiotic he wouldn't have an infection again like this. Can sinus infections be viral rather than bactrerial? I dunno. But like I've said a million and one times. Something just isn't right. I'm hoping that they will order Xrays in Urgent care. There just has to be something we can do to make my poor buddy feel better and keep him healthier! =/

I'll update tonight or tomorrow morning!

Thanks for checkingin on us. Please don't forget Timmy's family in your prayers!!!

Angela



Please keep Susan, Jay, Andrew and Jason in your prayers. Their sweet Timmy became an Angel early this morning. My heart breaks everytime one of 'our' kids 'wins' their battle in heaven rather than on earth. Please keep this family surrounded in prayers of love, comfort and strength!!!


Still working on the labs...sorry!



Hello Friends,

This weekend has been ‘good’. On Friday I went and got my hair cut. Yes, again...it’s just getting progressively shorter. Ha ha...I think this is as short as I’ll go though. Ha ha...Anyway, I also attended a Tupperware party with Angela K. Then Saturday Hadley and I went and got her hair cut. Hers also got quite a bit shorter. It is SO cute! I asked her if she wanted to grow it out long like a Princess or if she wanted to cut it short. She answered me with “Yeah...Little Hair!”. So we cut it short. It looks much more healthy and full. Then we went to Morgan's (www.caringbridge.org/ca/morganfaith) 3rd birthday party. She had a “Madagascar” theme. The kids had a blast!!! When we met Morgan and her family we called her “Baby Morgan”...she still bears the name...but she is such a BIG girl. It’s ben amazing to watch her grow and develop. She’s one of those kids that makes even me realize that sometimes I do take my children’s growth and milestones...and just the fact that they are here to face another day for granted. We Love You Mo-gan! Today has been a cleaning and ‘purging’ day. I’ve been in our walk in ‘pantry’ closet all day. I can say NOW (after several hours) that it IS actually a “walk in” pantry. LOL! My back is killing me...But, it feels so great to have it done! Hooray. I’m almost done with my ‘pre move purge’ in the Kitchen. This week I am moving on to the kid’s rooms. =)

At the Tupperware party a lady that I don’t know very well (but whose friend’s niece has a Brain Tumor) asked me how Hadley was doing. I replied immediately with a “Oh, she’s doing REALLY great...just great!” She was happy and said “so no reoccurrences or anything?” Of course then I was ‘caught’. It had been at least 6 months since I had talked to her so I had to say “well, no...she’s had a bit of regrowth...she’s changed drugs a few times...we’re on a phase 1 trial now...we really didn’t have much else left in the treatment dept...but she’s doing ‘good”. She kind of looked at me like I was a crazy person. I guess I’ve gotten so used to people asking and wanting or needing to only hear the good things...and I’ve gotten so used to this new way of life where a child doing ‘good’ is a lot different than a ‘healthy’ child doing good...that I just automatically rattle off how awesome Hadley is doing. In reality at that point Hadley was exhausted, washed out, had low counts, her hair had started falling out again, and she’d been in the hospital all week and had to have a PICC line placed because her veins are so scarred and tiny. But, who wants to hear that?!? Really. And who wants to repeat that every time someone asks how their child is doing? Not me. It’s a huge bummer. Anyway...I don’t really know why I felt the need to type all of that...but...it was just an insight I guess. I feel like sometimes I am a downer ‘here’ because it is easier. I don’t have to look at anyone’s face when I tell them how Hadley is really doing...I don’t have to see the pity in their eyes...I don’t have to feel uncomfortable when they don’t know what to think or say. And, I don’t have to repeat it. Anyone who wants to know can come here and read it. So, I guess if you want the “happy” answer you have to catch me in person or on the phone and ask me. =)

Hadley seems to be getting more and more tired. She went to bed for the night when we got home from Morgan’s party yesterday evening. She went down around 5pm and didn’t wake up until around 8 this morning. Then she took a 4 hour nap this afternoon. She went and laid down in Keegan’s bed and fell asleep. She even slept through me banging around in the pantry. LOL. Anyway...This worries me that her blood counts are still falling. Or, maybe her body is just busy ‘rebounding’ from this cycle of chemo. After all that is what this one week break is for. We’ll do labs in the morning. Thanks to the PICC line she doesn’t have to be poked. I’ll draw the labs at home and drop them off at the lab after I take her to school. We should know by mid afternoon how things look. Cross your fingers and say a prayer. If her counts are still dropping we’ll have to not only delay chemo but our spring break trip to Portland too. We can’t very well take off out of state on a road trip with her in bad shape.

Brandon has been studying all weekend for a test that he has to pass to be promoted. It’s on Navigation rules and laws. Please say a little prayer for him. He’s taking the test on Tuesday. Also he has an opportunity to “get underway” with one of the ships here for the day on Wednesday. That should be pretty cool. As hard as it will be on our family when he gets to his new ship...I think he’s really looking forward to it. He’s a sailor...he loves it.

Well...I think I’ve rambled enough. 2 months from next Saturday we should be all packed up in the car and headed to our new home in Portland. But, first we have to get up there and FIND a new home. LOL!

MRI is Thursday...I’ll do a quick update with blood counts tomorrow afternoon/evening...then I probably won’t update until Thursday night. Our MRI isn’t until 2:00 so we won’t be home until at least 6 or so.

Please keep all of our friends in your prayers...especially our sweet friend Timmy. He’s quite comfortable now...and is still hanging on. His immediate family is all home now...please pray for a peaceful journey to heaven for this sweet boy.
www.caringbridge.org/nj/timmyp

With Love and HOPE
Angela






Hadley sportin’ her new ‘do’ at Morgan’s Party.







Keegan pretending to be “gloria” the hippo and pop candy filled balloons.




Liam eagerly anticipating CANDY!!! =)

Friday, April 7, 2006 12:15pm

Hello All,

Sorry for the delay...again. =) This Mama is draggin'. I just don't have it in me to move very quickly right now (Mom, quit laughing...I know I've NEVER had it in me to mmove very quickly..ha ha) which makes it a challenege to get everyone going in the morning. We got Keegan off to school and then Liam and I took Hadley to her school for circle time. I think that's really all she would tolerate. She had a hard time during circle and was a bit aggitated...although I think part of that was that her favorite Miss Gina wasn't there...so there was a subsitute. Anyway, we cam home at 11:30 and she and Liam ate lunch. I ate a few graham cracker sticks (still swearing off solid food for the most part...ha ha) and now I'm trying to motivate myself to get up and get some stuff done. My house is absolutley horrifying. It's terrible...really. On top of that I need to start what I've come to call "The 3rd Year Purge"...most military families move every 3 years. When that happens you really have a great "opportunity" to get rid of 'stuff'. You're never really sure what size house you're gonna wind up with on the other end of the move (esp. if you're going to be living in govt. quarters). So you get rid of stuff and hope that it all fits and that you don't exceeed your weight limit with the moving company. Anyway...I have a pantry that I'm certain is a fire hazard (no joke)...and a ton of toys and clothes to sort through. It's time for the 3rd year Purge...watch out! =)

Anyway, Hadley did fairly well in the hospital...she was a bit of a pill. She does this thing now where she says "I'm doing crying"...and then she fake cries and wails for a few minutes. I'm fairly certain she was just bored. Anyway...I took a few activities we'd been saving up for our next hospitalization and we did some of those. We played BINGO on thursday. It's pretty cool. They broadcast it on the TV and you can play right from your room. She was more interested in singing "BINGO" at the top of her lungs...but that's ok. She got a BINGO and chose a wedding 'Barbie' as her prize. She's such a girly these days.

She seems to be doing fine. Her coloring is a bit washed out, she has some dark circles under eyes, she's just worn out. Like I said her blood counts fell pretty fast. She was over 2000 last Tuesday then on Wednesday (a week later) her ANC was around 900. That's not really all that unusual for Hadley she tends to drop and climb pretty quickly. Anyway, let's just hope her counts start rebounding and climbing again soon.

Our supplies for the PICC line were delivered last night so we're all set there. It has to be flushed with Hepparin every day. But, I don't have to do the dressing changes. Yay! A nurse willl come out every week to do it for us. =)

Not much else going on. Liam is feeling pretty good. I've been surprised by his energy the last few days. It's amazing what breathing 'normaly' can do for a kid.

I took some pics of the kids and Hadley's PICC line...Keegan's at school...I'll get some of him this afternoon and post later. =)


Thanks for stopping by. Please continue to rpay for our friends. Our Friend Timothy is still battling. Please pray for peace for he and his family. They love him so much ...it has to be a nightmare to watch him slip away, yet, know that, at this point it is what is best for him.

Love ya'll
Angela







BR>

Thursday, April 6, 2006 9am PST

8pm
We're Home...I'll update more tomorrow. Hadley's blood counts are down...as I suspected. Her ANC is under 1000. She has labs again on Tuesday....let's hope that her counts are going up instead of down.

More Tomorrow....


****************************************
Hi there. I can't believe almost a week of April is 'gone'. Oy...

Hadley is doing well. We arrived at UCSF at about 9:50 yesterday morning. There was some shuffling about regarding the sedation etc. So, the PICC line wasn't placed until about 2:45 (I think--the day sort of all ran together...). Hadley was AWESOME!!! She was given a dose of Ativan and was awake for the whole thing. She laid there and wathced Beauty and The Beast didn't flinch, look, or let out a peep. She really is an amazing little person. I'm so proud of her. Never mind the fact that she was NPO (Nothing By Mouth) all day. She had to have an X ray to make sure teh PICC line was in place before it could be used. We finaly got to her chemo around 6:15pm. She swallowed all of her capsules and did awesome. She was really worn out and looked horrible by bedtime last night. She was just exhausted. She didn't go to sleep until after 10:30.


I had to come home...I got sick again. This whole hernia and Acid Reflux thing is really miserable. I'm frustrated as all get out that I'm sick when I'm supposed to be taking care of my baby. I've tried two different medications now and they're jsut not working. I'm thinking a surgery to repair the hernia is in my near future...which I really don't have time for.


I talked to Brandon this morning and he said she's not looking much better. Poor baby. So...the boys are eating breakfast (I'm swearing off solid food for now) and we're getting bathed and dressed and we'll head back up there to visit and for Brandon and I to swap out. Since we started chemo so late last night we likely won't be discharged until around 8 or so. Her 24 hour blood draw should be at 6:10 tonight...but there is some "give" on that time and it depends on how busy the nurses are and how fast we can get through the discharge 'stuff'. So hopefully we'll be in our own house to sleep tonight.

The boys are doing ok. They had a really hard time when Hadey and I left yesterday morning...but, they dont' seem too traumatized today. Although, when I talked to Keegan on the phone (from the hospital) yesterday our conversation went like this:

Keegan: Hi Mom
Me: Hi bubba
Keegan: Is Hadley going to be OK Mom?
Mom: Yes baby, Hadley is just fine...she just has to have some tubies put in and the doctors need to look at her blood...just like when we take her to the lab.

Keegan: Ok Mom. Hadley is fine?
Me: Yup...You wanna talk to her?
Keegan: YEAH!

They are such sweet boys. They (especially Keegan) worries way more than he should have to. I feel bad that he gets that from me...or maybe I've even 'taught' him that. But he's always been that way...my sweet little boy who is concerned about everything and everyone. I wish he could worry about how many legs spiders have and why there are clouds in teh sky today rather than worrying about wether his sister is going to be "OK".

Alright...we need to get on the move. I need to get back to the hospital. I need to make sure I know how to care for the PICC Line and they want me to do a blood draw from it before we leave so I'd better get down there.

Please pray for our girl, our boys, Brandon and I...I really hope that next week is a 'break' (other than the MRI on THursday, of course)...we need it to be quiet. We are leaving on the 14th for Spring Break. We are going to Portland to "househunt" and hopefully meet with the school district.

Alright gotta run. Please Pray for all of our friends. This is such a hard journey. We all love our kids so much and wnat the best for them...whatever that is at different points along the way. Just pray for "our kids"...=)

With Love and HOPE
Angela

Monday, April 3, 2006 4:30pm

UPDATE 4/4/06 4pm:

Hadley's PICC line placement is scheduled for tomorrow at 11am. Please keep her in your prayers! She and Brandon are on their way home as I type.
*************************************


UPDATE 4/4/06 2:45pm:

Well, you know how I asked you all to pray b/c you just never know what's going to happen in the most routine sittuations. First, Brandon is at the hospital with Hadley becuase I was up all night with my hernia and acid refulx issues. It was not a fun night. I finally got to sleep at about 4am. So, daddy took our girl to the hospital. Nobody could get an IV started for Hadley. Her veins are just too 'shot'. Apparently they even had an infamous IV nurse come down from the PICU to try and get it started and nobody could. Soooo...she
and Brandon are still there waiting for a plan. Right now the 'plan' is to place a PICC line. they couldn't get it done today...so hopefully they will be able to do it tomorrow. Here is some information on the PICC Line: Click Here For PICC Line Information . Then, after it is placed Hadley's scheduled blood tests will start...and she will be int eh hospital for another 26 ish hours after they start the dose of chemo and her first labs. The PICC line will only be in place for a few weeks. She is scheduled to have a Broviac placed shortly after her next MRI and at that point the PICC line will come out. The Broviac is more or less a more "permanent" or longer term PICC line...and it is placed in the chest rather than the arm. Please Keep Miss Bug in your prayers. She's been sleeping most of the day and seems fairly content. Doctor Banerjee is going to be taking a look at her though because of some constipation issues...hopefully it's not anything too serious. I just feel so bad for her. She's such a trooper.

In other news we FINALY got orders!!! As of July/August of '06 Brandon (adn the rest of our family) will be serving our country aboard the USCG Cutter Mellon. The Mellon's homeport is Seattle, Washington. We're looking to make the move somewhere around July 1st. The kids and I will be living in Portland. Our support system there is much larger and Brandon's ship will be deployed for long periods of time (so that support system is going to be imperative). Here is the official homepage of the USCGC Mellon . We are very excited...but the stress of the move is already hitting me. It's all going to be fine though! =) We're going "home"...or at least closer to it! =) Yay!!!

Thanks for stopping by! I'll update when I know more!

Angela

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

Day 19 of Cycle 1 on Lenalidomide Trial...(2 more days to our 1 week 'break')

95 capsules Swallowed...10 to go!!! GO HADLEY, GO, GO, GO!!! =)

Mama's so proud of you baby girl!!!


Sorry to keep you all 'hanging'. It's been crazy here...

Hadley had a pretty remarkable vomiting 'session' this afternoon. It started at school and continued on for about a half hour or so. Shortly after she stopped vomitting she 'passed out' on the couch. I am fairly certain that this is a 'break through' migraine. It seemed fairly simillar to all of her episodes late last year. Our doctors "warned" us that at some point we may have to up her dose (double it actually) of Periactin. It seems that time has come. So we'll give her a second dose as soon as she wakes up. Then we'll hope and pray that this doesn't happen again for a very very long time. I feel so bad for her. She endures so much.

Liam is improving...although I am still saying that guardedly. He seems to be doing "better"...no fever...no phlegm vomit...and no purple lips...but he is still obviously breathing too fast, and the minute he even thinks about being upset etc he starts hacking and coughing and looking panicked. It breaks my heart.

Keegan is on his very first playdate out into the world without mommy (or gramma/grammy). He was invited to go out to celebrate his friend Ethan's birthday. His mommy and daddy are friends of ours...and his big sister is Keegan's "girlfriend". They are going to Chuck E Cheese tonight for dinner...this is Keegan's first trip (poor little brother of an immunocompromised child) so I doubt there will be much eating. Ha ha...the plan is for him to spend the night and go see Ice Age with them tomorrow. I hope he makes it through and isn't scared....If not, then they only live a few blocks away (literaly) and we'll go get him. =) he's getting so big...=)

Tomorrow is Hadley's PharmacoKinetic (sp?) testing again. We'll be admitted to the hospital (the Peds Clinical rewsearch center, to be exact) at 8 am and will be discharged around 10 am on Wednesday. We don't expect anything to go 'wrong' it's pretty simple...tehy place an IV...they draw blood from it at different intervals over a 24-26 hour period. Should be uneventful. But, y'know...this is Hadley we're talking about. =)

We didn't get orders today...but we're fairly certain that they will be coming at some point this week. We got an email that implied that our detailer is in the active stages of cutting them...so...we can only hope that we'll get them soon. Brandon is hoping to go by the island tomorrow to check email etc and see if they are there. Wouldn't that be great!

Well, it's now 5:30...I had to take a break to help my girl...I need to get dinner going. Thank you for checking in on us. Please keep our family in your prayers. We've got an awful lot on our "plate" right now. Thanks to you all.

Please pray for all of our friends...especially our little buddy Timmy who is still 'fighting'. He's been upset and seemingly uncomfortable and in a bit of pain again. Please pray for his peace and comfort. caringbridge.org/nj/timmyp


With Love and HOPE
Angela

Friday, March 31, 2006 2:15pm

Hello all,

Liam's appointment went "ok". He was very scared and stressed to be there. I felt horrible for him. But he finaly smiled right before we left the office. =) He was tickled with tehe dinosaur sticker he earned! =) He NEVER forgets his sticker. =)

So...the most likely answer to all of Liam's problems is Asthma. Our pediatrician didn't hear anything remarkable in his lungs. She was concerned, though, that he is breathing much faster than he should be. His breaths were obviously shallow...his lungs are just having to work harder than they should be to meet his body's needs. No chest Xray was ordered. Our ped feels that if she doesn't HEAR anything remarkable we likely won't see anything either. I expressed my strong concern with that and she promised me that if we treat Liam for 2 weeks and he is not improving we will have a chest Xray done to see what is going on. I am comfortable with that...an indefinite "we'll do it later if we have to" was not ok. She explained to me that there are other things that could be causing this...but they are much rarer and much scarier and she really doesn't think that they are likely. Well, "Rare" means nothing to me anymore...except that it's how my husband likes his steaks done. So...that is the time frame of our plan. As for the treatment...Liam is now using his Albuterol inhlaer 4 times a day. Albuterol is a bronchodilator that helps Liam breathe easier. Here is some information on Albuterol: Albuterol . We have added a new inhaler called Flovent. It is a steroid tha twill help to relax his lungs so they can function more normally. Here is some onformation on Flovent: Flovent . Our doctor also thinks it is possible that he has sort of a low grade or sort of chronic case of Pneumonia. She thinks it is possible that his body is able to fight it when he is doing well and then when for whatever reason his asthma flares up his body can't fight it and he spikes a fever etc. So, he is also on a large dose of Zithromax. It is an antibiotic that is typically only given for 5 days. But he issupposed to take it for about 10 days. So for the time being we are to give him his inhalers about 6 times per day (more if he is having a particularly hard time or wakes in the night coughing)...and of course the antibiotic once a day for 10 days. Our goal is to get him well enough that he is 'cough free' for at least 30 days. Then, at that point, we will try to reduce his meds significantly and see how he does. We don't expect to acheive this for at least 2 months or so. It'll take his lungs at least 6 weeks to sort of heal. So that is our plan (assuming that he starts to improve over the next 2 weeks and we don't need the chest Xray and change our plan according to it). Phew...

So...This is still sort of sinking in for me. I know in my head that this isn't "that big of a deal"...lots of kids have asthma. It's certainly not as rare or scarey as a Brain tumor...for sure! BUT, this is still my baby. My heart still hurts for him. I still feel that this is terribly unfair...I feel like we've already got enough on our plate medicaly and pharmaceuticaly wise (is that a word?). Why? It's so hard to have to teach another of our children that all of this medicine is for his good...that it'll make him feel better...that we know it's scarey...that he has to be "big boy" and take it. It's JUST NOT FAIR! What is fair though, right?!? Ugh. So, I'm sad, feel a little robbed (again)...and I am still scared that there is a possibility that this could be something 'bigger'. I am terrified to have another child diagnosed with something horrible that I overlooked for such a long time. I really don't think I could take the guilt (again). My brain knows that I should be taking all of this in stride...but, I am still a mommy, with a heart...and my baby is 'sick'.

Please pray that Liam's health starts improving...and that his Mommy can 'pull it together'. =)


We're STILL waiting on "orders"...we were told that they woudl hopefully be cut this week. Guess not. Maybe next week will be our week! Let's hope anyway! July 1st is 3 months from Saturday and we still have no idea where we will be living. Sometimes youo just have to laugh so you don't go absolutely insane! =)

Hadley is feeling good...she made it through the entire day at school today. I'm sure she'll be exhausted when I pick her up in a few minutes. Hopefully she'll get a lot of rest this weekend.

We got the results of Brandon's biopsy last night. It was benign and appeared to be "just a strange mole". Benign is always good news! Thanks for the prayers!


Alright, I'm off to get the Princess!
Have a good weekend!
Angela

Friday, March 31, 2006 9:30am

Hi all,

Liam and I will be heading to our pediatrician's office as soon as we drop Keegan off at school. Our appt is for 10:30. Please pray for us. I am quite certain that I am just a paranoid mama who's been through a lot with her babies...but, I am just terrified. Anyway...just pray for us. regardless of what this feeling is....it is extremely unpleasant. Poor Liam is still not feeling well...and all of a sudden he is terrified of his inhaler. You'd think that with all that we've been through this would be a cake walk...but, for some reason it is just not. I'll update when we get home...thanks for checking in on us. We love you for it.

Angela

Wednesday, March 29, 2006 7pm

Hi all

Hadley's labs were great. Yay! She's still feeling well...still very tired...very puffy...kind of swollen, or perhaps has just gained a LOT of weight very quickly. Quite odd.

We're not going to the clinic tomorrow. Hadley will bein the hospital on the 4th...so we'll see doctor banerjee then.

Liam has spiked yet another fever. I think I am about as worried about him as I am Hadley right now. This poor boy. His cough is still not gone from about a month ago. It waxes and wanes but has never left. Today his lips were purple for about an hour. Scared me...but, other than his lips he seemed ok. A few hours later he spiked a fever of 101...we gave him Baby Advil...40 mins later it was up to 102. Rectal Tylenol and he's finally back down to normal and up and walking around again. I'm growing increasingly worried that there really is something serious wrong with him. This just isn't right...I don't feel right about it...and after our journey with Hadley and having every doctor under the sun tell me that everything was fine and to calm down...Well, I don't listen anymore until they have proof that they are right. I have let this go long enough without exploring it further...it's time. I just spoke with our Pediatrician and Liam and I are going to see her at 10:30 on friday am. We are going to discuss further testing etc. Until then we are to keep up on the Tylenol and Advil and give his inhaler at least 3 times a day every day. I am very confident in our Ped...I know that she will take good care of Liam...But, I am going to do some research tonight and see what kind of tests etc I may want to ask for. I'm sort of a respiratory dummy...time for a crash course I guess.

Keep us in your thoughts and prayers. Pray for all of our friends. Thank You for stopping by!!!

Angela

Tuesday, March 28, 2006 2pm

I forgot that since Gramma came we got to give her the surprise that we made for she and grampa...so now I can finaly share it with all of you! I added the media player above...turn your volume up and enjoy!


Hello All,

"Daddy" and I are home. We had a good time. There were a few glitches here and there but I think everything still worked out ok. =) We did have a VERY scarey moment on the way home. One of those moments that makes you stop and think about all the things that you've left unsaid etc. Our flight was delayed over an hour...we finally get on the plane (very eager to get home and go to bed), the plane taxi's to the runway etc., we were cleared for take off and start down the runway at that crazy fast speed...then the plane SLAMS on the brakes and we stop on the runway. Scared the crud outta me. The pilot comes on and says not to worry it was just a "snafoo" in air traffic control. I'm thinking...Ok...you're right I won't worry. LOL. Apparently a plane landed and didnt' clear the runway quick enough so the plane landing after it had to pull back up and flew right into our path. As the plane slammed on the brakes Brandon looked out the window and said Holy 'Crud'...there's a plane right in our path. So...that was very scarey. As soon as the plane slammed on the brakes I just prayed..."Please let me get home to my babies...PLEASE". It's odd how being a Mom changes our thinking too. I wasn't even really thinking of myself...I just wnated to get home safely so that I could take care of them. I'm not ready to leave this earth...but I wasn't really scared for myself. I just didn't want my babies to not have me there to take care of them.

The kids did great over the weekend. They were very glad to have us home, and a bit nervous to let us out of their sight...but they handled the seperation VERY well. =) I'm so proud of my babies.

Hadley's still feeling pretty well. She is VERY tired...sleeping a lot, falling asleep at school etc. But feeling OK. She has dark circles under her eyes again. She is really 'puffy'. SHe just looks like she's retaining water or something...and her eyes look really 'puffy' especially in the morning. I don't think it's anything serious...but Doctor Banerjee wants to see her on Thursday to be sure. You can never be too cautious I guess. =)

We still dont have 'orders'. We go t word last week that they were hoping to 'cut' them this week some time. We also heard that it's sounding like 'they' are leaning toward leaving us here in the Bay Area. Brandon would have to change jobs but, it would be here in this area. Apparently the Coast Guard is trying to employ a new 'standard' for high priority special needs families. They'd like to keep all families with a high special needs rating in the area they are in (given that their needs are being met where they are). We'll just have to wait and see what happens. There are ups and downs to every possible scenario. We are a military family and it will all be fine. Semper Paratus...Always Ready...right? Ha ha! The waiting is just so hard. This is a very important year for Hadley education wise...well every year is...but this is a BIG transition year for her. There is always a lot of work behind every transition for Hadley. =) Anyway...jsut say prayers. I'm confident that our family can hande any sittuation we're put in (we're cool like that...ha ha)...I just need to learn to let go of all the stress and worry. =)


Please say a lot of prayers for all of our friends. There is always a lot of heartache around us. There are always things to rejoice over too...but the 'hard' stuff is always so 'big'. I always have a hard time when our friends are hurting.

Timmy P is still 'fighting'. He seems to be comfortable again. He is such a sweet boy...he's been such a blessing to his family and his community. We Love you Timmy and family...and all who love and support them!!!
www.caringbridge.org/nj/timmyp

Genna just returned home from her "wish" trip. We're looking forward to all of those great pictures!!! =)
caringbridge.org/nj/gennahenna

Miss Morgan is facing some education 'issues'. This is a hard one for me. This is something that happens way too often. Amazing kids not getting the help they need and deserve. Please pray for Morgan and her family and for our School District.
www.caringbridge.org/ca/morganfaith

Please continue to Pray for Miss Hadley. Pray that this chemo keeps that tumor stable. Pray that her energy increases. Pray for her upcoming MRI on 4/13. Pray diligently for her transition from Special Ed Preschool to Elementary School!

Thanks for checking in on us. Sorry to leave you all hanging. My babies really didn't let me get much of anything done yesterday. =)

With Love and HOPE
Angela

Tuesday, March 21, 2006 6pm

30 capsules swallowed...75 to go...for THIS cycle! GO Hadley!!!


Hello All, =)

Well, the Amazing and Mysterious Hadley has struck again. Ha ha. Her ANC...are ya ready...was 3000. This is GREAT! She was in a downward trend up until at least last Tuesday (7 days ago). Her last ANC was 1090. Now, we're back up to 3000. Puzzling...but great. =)

The home care lab dropped the ball. They never called or showed up. Furthermore, neither I or our Neuro Oncologist's office could even get a hold of anyone. Even their voicemail was "full" so we couldn't even leave messages. Very odd.

We wound up going to Quest. We have two favorite phlebotomists there. I was VERY excited when we walked in and they were BOTH sitting at the desk! =) So, we got a vein on the first try but, it collapsed before they even got a 'discard' tube drawn. So, we went to another vein on her other arm. It's up pretty high...up past her elbow almost on her bicep. But, we got the labs drawn...and a few more bruises to add to the gorey collection. =/

Because of all this we will be having a central line placed again. We are going back to a Broviac. It's kind of a pain to take care of...and the risk for infection is pretty impressive. But, Hadley's poor little veins don't seem to want to put up with much more of this. We are waiting, however, until after Hadley's MRI on April 11th. We want to make sure that her tumor is remaining stable...allowing us to stay on the trial (which makes it neccesary to draw weekly labs). Did ya follow that? Ha ha.

Well, the boys are on the mend. Both of their coughs are still lingering...but, no fevers...and they're both up and running around and into all kinds of mischeif again. Hey, they ARE boys...=)! Hadley is showing no signs of even thinking about getting this (especially given her GREAT blood counts). I don't think she got that whole immunocompromised memo. LOL. I, however, did manage to get it. No fever yet...just a gnarly (and very painful)cough...But, I feel like I may be on the upswing of it. Or maybe it's just wishful thinking. =) All I know is that our plane leaves at 8:45am heading for Vegas and I had better be well by then. =)

Gramma Fox flies in tomorrow. Keegan has been aching to see her. He's even been telling me "I can't wait until I'm older and I can go see Gramma." I ask him why he has to be older and he answers "Because I have to be older to fly on the airplane without you Mom!". Ugh. He's only 4 and he already wants to ditch me. Oh well, I can't entirely say that I'm not looking forward to a day when I feel comfortable sending my kids off for a few weeks and not worrying. Some day...MAYBE. I'll have to pray about that one I guess. LOL.

Brandon has an appt with a dermatologist tomorrow. As far as we know they are going to biopsy whatever it is that is growing on his head. It's been there since he was a kid but, it just recently grew a bunch...and just looks different in general. It freaks me out...so I nagged him...and threatened to call his mom...which is what finaly did the trick. So...say a little prayer for "daddy". He won't admit it but, I think he's nervous. I'm sure it'll be fine...but, you just never know do ya? Busy day tomorrow. Let's hope this darned cough doesn't decide to get worse on me or anything. =)

Alright, off to eat dinner...hit the grocery store...clean up a bit...and think about what I'm gonna pack for Vegas. Do you think yoga pants and tennis shoes are appropriate...I hate real clothes. Ugh!

Thank You For checking in on us...Please Pray for our friends...Timmy P is still fighting...we love you Timmy! Genna is on her Make a Wish Trip!!! She is going to the same place we hope to go later this year...=) Have FUN Genna and Family!!! Our friend Jordan's foot has really been bothering him for SEVERAL months and it is finally healing! We're so happy for you Jordan!!! Pray for all of our friends...God'll know who you're talking about...just tell him that Hadley's scatter brained Mama can't remember all of them. Especially pray for the families of all of our Angels. There have been a lot of new angels this year already!

Alright...G'night all!
**Peace and Results**
Angela

Sunday, March 19, 2006 8:40pm

Happy Belated Birthday to "Auntie Hayley" who turned 19 on Saturday!!! We love you!

Another weekend has come and gone. Why do they go by so quickly? =)

Hadley is doing amazingly well with swallowing her chemo. She really does amaze me. Tonight was her fourth dose...so to this point she's already swallowed 20 fairly good sized capsules! And, she's done them all on the FIRST try! I'm so proud of my trooper. She's had some diarreah and has been very sleepy. We're giving her Zofran just in case it nauseates her. Other than that it's going "well". Still an emotional battle for me every night...making my baby swallow that stuff. I am very thankful that the emotional battle is not compounded by a physical one to get her to swallow them. If that were the case I think we would have given up by now. But, our girl is a super star and is doing great. An ample supply of glittery stickers has saved the day (or night, in our case)on more than one occasion. =)

SHe has labs on Tuesday (hopefully in the morning). We should get results back Tuesday afternoon. I'm nervous about her counts. Same Stuff as all the other chemo regimens ya'll know the song and dance by now, I'm sure.

The boys are both sick...again. I'm so tired...Didn'te we JUST go through this? Why on earth are my boys sick and my immunocompromised kid is still "healthy". I don't get it. Keegan started witha cough and a scratchy throat, then a fever, now a runny nose. He's coughed so hard he's vomitted a few times. BUt he's eating and drinking well and seemed to feel a ot better today than he did yesterday...so taht is good. Liam is just coming down with it this aftenoon. His cough already sounds horrid. That poor boy...*sigh*.

I guess that's it for us for now. No appointments for this week, other than labs on tuesday. After the last 2 weeks it'll be nice to be able to slow down...a little...ha ha...ok who am I trying to kid. =)

Thanks for checking in on us! Pray for all of our friends!!! And pray for those stinkin' "orders" to come this week! This mama is beyond impatient. =)

**Peace and Results**
Angela

Friday, March 17, 2006 3:40pm

A very merry Anniversary...to me?...to you!...A Very Merry Anniversay...to me...to who?...(sung to the tune of a very merry unbirthday)...

Ok, so I need some sleep...Ha ha. No, No green beer today...just a little sleep deprivation.

Well the plan was for Hadley and I to go into the city and do labs and come home etc. Well...we decided that if we had to go down there anyway, we may as well drag the whole family along and have some fun while we're at it. SO, we all loaded up...got to UCSF at about 9:45 tried with all of our might to get the labs drawn. Then we went down to Pier 39 and roamed about. It was fun. We rode the carousel (soemthing we'd never taken the time to do before), went out to lunch, visited the sea lions, and daddy and the boys went to the Aquarium while Hadley and I snuck a big ol chocolate ice cream on a waffle cone. =) Hadley INSISTED that she absolutely, possitivel did NOT want to see the fish..."NO FISH MOMMY!"...then while the boys were there she broke down in the middle of a semi crowded store screaming "Pirannah, Pirranah...". I have no idea what that was all about...but once we were out of the store I had to chuckle about it. I'm sure there are other people whose children act mysteriously...but sometimes I wonder if anyone's kids act quite like mine...LOL! I really do think I brought this upon myself. When I was pregnant with Hadley I wrote in her baby book that all I wanted for her was to be an independent thinker, unque in every way, and most importantly...Happy! So I guess, when I claim to have to let go of all my dreams for her (and dream new dreams)...I'm overlooking the original and biggest 3. Because Hadley is all 3 of those things...and then some...LOL. So...we had a good time! It was beautiful out...nice and sunny, breezy of course...but, not too cold! =)

here are a few photos:








So...the labs...Hadley's veins are a serious mess. I am strongly considering asking for a broviac again. She is such an impopssible draw. Nobody gets her ont eh first stick anymore. She holds perfectly still and hardly makes a peep through all of the poking and 'diggin' around...but her veins are just scarred and collapsing etc. The nurse in PCRC (Peds Clinical Research Center) couldn't even get her labs drawn this morning. This is a nurse who cares for kids all day....doing lab draws, placing IV's etc. She poked Hadley 3 times and finally decided to call our oncologist's office and tell them that she wasn't going to put Hadley through anymore. Her arms are a wreck bruises all up and down them...it's so sad and looks so painful. Anyway...I hope we can find a solution to this...i really don't want to continue to put Hadley through that every week. ugh...

Well...I was going to do something creative and post old Pictures and maybe wedding photos of brandon and I...but, honestly I am way too scatter brained right now. The kids are down for naps and I think I'll do the same. Thanks for stopping by...

AND REMEMBER...Go easy on the green beer Lads and Lassies...because it aint easy 'peeing' green! =) Hee hee!

Happy St Patrick's day
Peace and Results
The Pseudo Irish Family

Friday, March 17, 2006 3:40pm

A very merry Anniversary...to me?...to you!...A Very Merry Anniversay...to me...to who?...(sung to the tune of a very merry unbirthday)...

Ok, so I need some sleep...Ha ha. No, No green beer today...just a little sleep deprivation.

Well the plan was for Hadley and I to go into the city and do labs and come home etc. Well...we decided that if we had to go down there anyway, we may as well drag the whole family along and have some fun while we're at it. SO, we all loaded up...got to UCSF at about 9:45 tried with all of our might to get the labs drawn. Then we went down to Pier 39 and roamed about. It was fun. We rode the carousel (soemthing we'd never taken the time to do before), went out to lunch, visited the sea lions, and daddy and the boys went to the Aquarium while Hadley and I snuck a big ol chocolate ice cream on a waffle cone. =) Hadley INSISTED that she absolutely, possitivel did NOT want to see the fish..."NO FISH MOMMY!"...then while the boys were there she broke down in the middle of a semi crowded store screaming "Pirannah, Pirranah...". I have no idea what that was all about...but once we were out of the store I had to chuckle about it. I'm sure there are other people whose children act mysteriously...but sometimes I wonder if anyone's kids act quite like mine...LOL! I really do think I brought this upon myself. When I was pregnant with Hadley I wrote in her baby book that all I wanted for her was to be an independent thinker, unque in every way, and most importantly...Happy! So I guess, when I claim to have to let go of all my dreams for her (and dream new dreams)...I'm overlooking the original and biggest 3. Because Hadley is all 3 of those things...and then some...LOL. So...we had a good time! It was beautiful out...nice and sunny, breezy of course...but, not too cold! =)

here are a few photos:








So...the labs...Hadley's veins are a serious mess. I am strongly considering asking for a broviac again. She is such an impopssible draw. Nobody gets her ont eh first stick anymore. She holds perfectly still and hardly makes a peep through all of the poking and 'diggin' around...but her veins are just scarred and collapsing etc. The nurse in PCRC (Peds Clinical Research Center) couldn't even get her labs drawn this morning. This is a nurse who cares for kids all day....doing lab draws, placing IV's etc. She poked Hadley 3 times and finally decided to call our oncologist's office and tell them that she wasn't going to put Hadley through anymore. Her arms are a wreck bruises all up and down them...it's so sad and looks so painful. Anyway...I hope we can find a solution to this...i really don't want to continue to put Hadley through that every week. ugh...

Well...I was going to do something creative and post old Pictures and maybe wedding photos of brandon and I...but, honestly I am way too scatter brained right now. The kids are down for naps and I think I'll do the same. Thanks for stopping by...

AND REMEMBER...Go easy on the green beer Lads and Lassies...because it aint easy 'peeing' green! =) Hee hee!

Happy St Patrick's day
Peace and Results
The Pseudo Irish Family

Friday, March 17, 2006 3:40pm

A very merry Anniversary...to me?...to you!...A Very Merry Anniversay...to me...to who?...(sung to the tune of a very merry unbirthday)...

Ok, so I need some sleep...Ha ha. No, No green beer today...just a little sleep deprivation.

Well the plan was for Hadley and I to go into the city and do labs and come home etc. Well...we decided that if we had to go down there anyway, we may as well drag the whole family along and have some fun while we're at it. SO, we all loaded up...got to UCSF at about 9:45 tried with all of our might to get the labs drawn. Then we went down to Pier 39 and roamed about. It was fun. We rode the carousel (soemthing we'd never taken the time to do before), went out to lunch, visited the sea lions, and daddy and the boys went to the Aquarium while Hadley and I snuck a big ol chocolate ice cream on a waffle cone. =) Hadley INSISTED that she absolutely, possitivel did NOT want to see the fish..."NO FISH MOMMY!"...then while the boys were there she broke down in the middle of a semi crowded store screaming "Pirannah, Pirranah...". I have no idea what that was all about...but once we were out of the store I had to chuckle about it. I'm sure there are other people whose children act mysteriously...but sometimes I wonder if anyone's kids act quite like mine...LOL! I really do think I brought this upon myself. When I was pregnant with Hadley I wrote in her baby book that all I wanted for her was to be an independent thinker, unque in every way, and most importantly...Happy! So I guess, when I claim to have to let go of all my dreams for her (and dream new dreams)...I'm overlooking the original and biggest 3. Because Hadley is all 3 of those things...and then some...LOL. So...we had a good time! It was beautiful out...nice and sunny, breezy of course...but, not too cold! =)

here are a few photos:








So...the labs...Hadley's veins are a serious mess. I am strongly considering asking for a broviac again. She is such an impopssible draw. Nobody gets her ont eh first stick anymore. She holds perfectly still and hardly makes a peep through all of the poking and 'diggin' around...but her veins are just scarred and collapsing etc. The nurse in PCRC (Peds Clinical Research Center) couldn't even get her labs drawn this morning. This is a nurse who cares for kids all day....doing lab draws, placing IV's etc. She poked Hadley 3 times and finally decided to call our oncologist's office and tell them that she wasn't going to put Hadley through anymore. Her arms are a wreck bruises all up and down them...it's so sad and looks so painful. Anyway...I hope we can find a solution to this...i really don't want to continue to put Hadley through that every week. ugh...

Well...I was going to do something creative and post old Pictures and maybe wedding photos of brandon and I...but, honestly I am way too scatter brained right now. The kids are down for naps and I think I'll do the same. Thanks for stopping by...

AND REMEMBER...Go easy on the green beer Lads and Lassies...because it aint easy 'peeing' green! =) Hee hee!

Happy St Patrick's day
Peace and Results
The Pseudo Irish Family

Thursday, March 16, 2006 8pm

Hi all,

It's 8pm...Hadley and I JUST got home. We left at 6:40 this morning...LONG day. Hadley was a TOTAL trooper...I''m so proud of her. Our nurse, Erin, was amazing to us. Hadley slept most of the time. About 3 hours after she took the chemo she was just out for the count. One minute she was running around (me running after her with her IV pole) and chatting at eveyone...the next she was in La la land. =) A lot of breakthrough seizures today. Other than that and the horrendous commute home it wasn't really a "bad" day. Just Long.

I read most of Sheila Walsh's book "Life is Tough but, God is Faithful". Good book! I HIGHLY reccomend it. My pal Shauna bought it for me over a year ago and I'm just getting around to it...I really wish I had read it sooner. I'm quite certain I'll be quoting it in future posts. =)

Please say your prayers! I thought Hadley would only have to swallow one capsule...Nope, not so much...the capsules only come in two different sizes 25 and 5 mgs. Her dose is 45 mgs...so she has to take FIVE, yes 5, Capsules all at once every night. OY. She was not a happy girl this morning...but she did it. She swallowed all five AND they gave her Zofran in Pill form and she took her migraine med this morning too...so today before 10 am Hadley had swallowed 7 pills, and 5mls of liquid Trileptal. What a brave girl!

Alright...I have to get something in my belly...I've been living on snack food all day and I need some 'real food'. We have to be bacak at the hospital between 9 and 10 tomorrow morning....then no more labs till Tuesday. YAY.


Ok...thanks for checking in on us. Brandon and I celebrate our 6th wedding anniversary tomorrow...Wow...6 years has flown by and creeped along all at once. =) I'll update again in the morning. =)

**Peace and Results**
Angela

Tuesday, March 14, 2006 8:22pm

***All the testing today went fine. It was a lot longer day than I expected...but, that's ok. We need some prayers folks. Hadley's counts are already pretty crumby and we haven't even started chemo yet. They're not chemo low yet...but this darned seizure drug really screwed up her counts. Being on it excluded her from the last trial and it is still a possibility that it could exclude her from this trial now too. I swear...all because an NP was too busy to listen to me...too busy or careless to take proper care of her patient. Frustration doesn't begin to touch it. I was almost over the anger of the seizure drug mess until today. Ugh...anyway Hadley's ANC (Absolte Neutrophil Count) is 1090. She has to have an ANC of 1000 to start the trial and to start each cycle. For the love. If we re checked her ANC again tomorrow or Thursday it is almost certain that she would not be able to start and we would lose our spot on this trial. =( This also means that Hadley's blood counts will probably be pretty low for a while. At least until we can get off the Trileptal (Probably at least another 2 months). So please say big prayers. I'm begining to feel HUGE pangs of guilt about going to Vegas. I know we should...but this is killing me. I don't want to leave my girl. Everything has been so rocky just trying to get her on treatment. It makes me nervous to leave...even just for the weekend. It seems incredibly selfish to leave to go and have a good time while she is begining treatment and facing neutropenia etc. *sigh* I know what my heart is telling me to do. I've always trusted my mommy gut and I feel like I shouldn't go. But, on the other hand I don't want to let Brandon down either. We've both been looking forward to this...but he, especially, has been. *Sigh* If only there was a right and wrong answer. Man I hate all of this.

So the other issue where the trial is concerned is paperwook stuff. I don't know exactly what the issue is...But our Doc and NPs are going to work on getting it straightened out tomorrow so that we can start on Thursday. If we arent' able then we'll need to start by Tuesday...otherwised we'll have to draw more labs and then we'll be excluded again. UGH. Please just say prayers that we are 'put' on the best path possible!

Here is some info on ANC. Why it is important and what the ranges are.

ANC Information

Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.

In practical clinical terms, a normal ANC is 1.5 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).



Hadley gets to go to school tomorrow. Yay! She hasn't been able to go this since last Thursday b/c there was no school on Friday or Monday and the she couldn't go today b/c she was NPO all day. So, I'm sure she'll be VERY excited to be able to go tomorrow. Yay!

Speaking of NPO...before Miss Hadley even opened her eyes (coming out of Anesthesia) she said "I hungry Mommy..."! She wound up not going into the scanner until 3pm. Which was technically only a half hour late...but oh m an...No food in her belly for 19 hours. Poor baby doll. She was such a trooper today. I'm so proud of her!

She is 44" tall now and weighs 54.5 lbs. She's getting to be sucha big girl! =) Where does the time go. Alright. I promisde Keegan I'd do a new Dora puzzle with im before bed...so I have to run! I'll update again on Thursday night...if you're lucky you won't hear from me again until then! LOL!

**Peace and Results**
Angela

Monday, March 13, 2006 5pm

As of now, the trial is still a "go". There was some concern over a family history of DVT's and the debate over stroke/brain damage in Hadley's history...but we will be able to move forward with treatment. Which is good...I guess. No, it is...I just feel...I don't really know what I feel. Anxious, scared, uncertain, and hopeful all at once. I'm trying not to doubt myself. Trying really hard to just go with our Oncologists reccomendations and hope that it will turn out in Hadley's best inetrest. To be quite honest I think a lot of it is just that I'm tired...plain old good and tired. This to shall pass...

So..new music on the page. Way, way back I had this song on a 'zeoflick' here on Hadley's page. It is so very Hadley. She is all things that this song touches on. Amongst Hadley's greatest qualities is her solid sense of self. Her disregard for other people's oppinions of and expectations for her makes her 'stand out' nearly all the time. Sometiems the light is favorable and sometimes not so favorable. But she is who she is ALL the time. You have to give her that. She certainly is the spitting image of her father. And, yes, her Mama is her biggest fan. We love you baby girl!

I just wanted to touch for a moment on some of the wonderful changes that have taken place over the past several weeks. We have our 'old' Hadley back. Our sweet girl has returned and the "Keppra rage" is gone for good. That was so very hard. I didn't really realize how much it was affecting all of us until these past few days. She has been a completely different child. She is back to wanting to be hugged, cuddled and held...her contagious smile is back...She has been nice to her brothers and friends and is even trying to initiate play with them again. It has been amazing to watch. Keegan is still quite leery of her. He got beat up a few too many times during her "rages"...but he is coming around. I'm so proud of my girl and so thankful that we finally got her off the drug and that those nasty side effects have excused themselves from our lives.

On that note a refferal is on procces to move Hadley's Neurological care to UCSF. Hopefully we'll have our first appt there in the next few weeks. =)

I just found out that Thursdays Pharmiko-Kinetic Testing will extend into the morning on Friday. We have the choice to stay overnight or go back in the morning. We're taking the second option. While it may be 'easier' to stay over night...I'm quite sure that after these past 2 years I wll NEVER choose to stay in the hospital. Oy. So now we will be driving back into the city on Friday morning as well. Thank goodness we get free parking there because of Hadley's Handicap Parking Placard.

Srill no "orders". We, or I, am begining to have a very hard time being patient. We heard through a friend of a friend of a friend that everyone should have orders by the 15th. We'll see. I hope so...but, I'm not holding my breath.

ALright...I'm off to make dinner. Thanks for checking in on us. Please keep praying for all of our friends.

Congrats to Pop Pop who was "sworn in" to his local Sheriff's Dept this morning. =) Way To Go Pal! =)

Alright...
*Peace and Results*
Mama Fox

Sunday, March 12, 2006 1:15PM

MONDAY 11:50am

Please say big prayers..It looks like we may have another problem with starting treatment. Please pray that we can get this worked out. And that God makes whatever is in Hadley's best interest happen. Thanks Ya'll!







Hadley 3/11/05


Sleeping Princess Hadley 3/12/05


What a Sweet Princess...


I Love the way Hadley sleeps...she has slept this way from the time she was tiny. We had to let all 3 of our babies sleep "the wrong way" b/c they loved sleeping on their bellies..and would stick their booties up in the air and cross their ankles...too. It's jsut funny to me that they all slept the same way. =) Too cute!


Nemo On Ice was a lot of fun! This is our first Disney on Ice show with the kids and I know that we'll go back. Too be perfectly honest I really expected it to b torture for Brandon and I. Ha ha...but it wasn't. It was actually really cool. Everything was insanely overpriced...but, it's alll relative I guess. When you have a child who goes through so much and who has forced you to realize that tomorrow isn't promised...is their really anything you WOULDN'T do for them or any of your children? I actually really expected the boys to enjoy it a lot more than Hadley. I think they all enjoyed it a lot...But Keegan and Liam weree both a bit timid and scared. Hadley just loved every second of it! We had awesome seats and it was just all around a fun experience. =) I can't wait until the Princesses On Ice come back around! =)

I didn't take my camera b/c I wasn't sure if they were allowed and didn't want to carry it back to the car if it wasn't allowed. My friend Angela took a few pictures though...so I'll post those when I get them. =) Until then...

5 tickets to Nemo on Ice: $160. Parking at Nemo On Ice: $13. Snacks and Drinks for 5 at Nemo On Ice: $55. 3 Cotton Candies at Nemo On Ice: $30. Watching all three of your children (age 5 and under) sitting, smiling, laughing, clapping and enjoying something simultaneously: PRICELESS!!! =)

Please keep us in your prayers this week as we embark on a new chemo journey. This is so nerve wracking and scarey. Hadley is strong and I thank God for that. Please say paryers that all goes smoothly this week and in the months to come.

Monday: Typical Schedule...Braeden and Morgan here
Tuesday: Hadley has a PET scan and possibly more MRI studies at UCSF
Wednesday: Typical Schedule...Braeden and Morgan Here
Thursday: In the hospital all day...starting chemo.
Friday: Typical Schedule...No Braeden and Morgan (have fun with gramma and grampa sunshine)...Mama and Daddy's 6th Wedding Anniversary.

Please pray for good results from Morgan's "boom boom" (cardiology) appt.!

Please keep all of our previously mentioned friends in your prayers. Also please pray for a sweet girl we met at the hospital last week. She is 13 and severely developmentaly delayed. She has a brain tumor and is on her last ditch effort chemo. She is on a different phase 1 trial than Hadley. Apparently she was on the trial that we were supposed to start and it failed for her pretty quickly. Please pray for this sweet girl and her grandparents who have raised her. This little girl really touched my heart. At first my heart broke...I saw what Hadley could be several years down the road...my heart broke...that's not what we dream of for our children...but...as time went on and I spent more time (one blessing of the MRI dept runing 2 hours late) with "M" I saw a very pure, very sweet spirit. She was so loving, kind and truthful. I will continue to hope that Hadley grows and learns and blows us all away with her accomplishments some day...but, I realized...because of my time with "M" that everything can be OK...more than OK...no matter what the future holds. Please pray that this trial works for "M" and that she gets a reprieve from her fight against this tumor.

Thank you for your thoughts and Prayers...and for checking in on us. Please remember to sigh the guestbook. =)

**Peace and Results**
Angela

Friday, March 10, 2006 10:15am

Hi all...

We're still just hanging out. Busy times around here. Hadley is still feling very well. Lots of energy, happy moods just looking great these days. =) Makes me sad to start her on chemo again...but, we do what we have to do.

The boys are doing well...Liam's respiratory gunk is cleared up. Mine and Keegan's "pink eye" is finaly gone. Brandon has a biopsy on something weird on his head on teh 22nd. Hopefully it's "nothing". Everyone seems to be fairly healthy. **knock on wood**

We go to Finding Nemo on Ice tomorrow at 11:30am. I think the kids are going to love it. They're VERY excited! =) Then we should have a 'quiet' day on Sunday...Hopefully I'll be able to get some stuff done around the house. Then next week will be pretty hectic. Monday, Wednesday and Friday will be our nomral routine. Hadley and Keegan go to school and Braeden and Morgan come and play. So, throughout the day there are 5 kids cycling through the house. They all get along fairly well and have a lot of fun. Then Tuesday and Thursday will be spent at the hospital. On Tuesday we shouldn't have to leave for UC until about 12:30 or so. But Thursday we have to be there by 7:30 to get parked and to the research center by 8 am. So, we'll have to leave the house no later than 6:15 or 6:30am. Then we should be released around 4 or 5. Depending on whether we get started on time and if all goes according to plan (which it should). During this 8 hour stay Hadley will be given her chemo first thing in the morning and then will have her blood drawn at different intervals throughout the day. These samples wiil then be studied to see how she metabolizes the drug etc. They will place an IV in the morning and then use it for all the draws so that she doesn't have to be poked all day. After this initial hospitalization she should only have to have labs drawn once a week.

Hadley is supposed to be starting the Pediatric Brain Tumor Consortium trial PBTC018. This is a phase 1 trial for Lenalidomide. Here is some information on trials and Phases:
CLinical Trial Information

How are Clinical Trials Structured?
Clinical trials are structured into four phases:
In Phase I clinical trials, researchers test a study drug in a small group of people (20 to 80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
In Phase II clinical trials, the study drug is tested in a larger group of people (100 to 300) to measure its effectiveness and further evaluate its safety.
In Phase III clinical trials, the study drug is tested in large groups of people (1,000 to 3,000) to confirm its effectiveness, monitor side effects, compare it to approved standard treatments, and collect information that will allow the study drug to be used safely.
In Phase IV clinical trials, the drug is tested after it has been marketed to collect information about its effect in various populations and about any side effects associated with long-term use.


This drug has already been approved by the FDA for other medical conditions...so a lot of the information you will find on it will mention those disorders. It is a phase 1 trial for brain Tumors so you likely won't find ANY information on it in regards to BT's. But here is a link to some information on it: Lenalidomide Information Hadley's schedule will be 3 weeks on. Taking one pill a day for 21 days. Then have one week off. This 4 week period is called one CYCLE. The study protocol is for 12 cycles...or in this case 12 months. We'll see how it goes. =)

Don't forget our Mantra! ***Peace and Results***Peace and Results***Peace and Results***

Please continue to pray for our friends:

Devin is waiting for the results of a Lumbar Puncture.

Jenna jsut got the awesome news rthat she is officialy in REMISSION!! Yay Jenna!

Our little friend Paige is having her MRI etc today...and will get results this afernoon! this little sweetie is expecting clean scans...pray, pray, pray!

Our friend Ryan was buried on Wednesday. Please pray for his family.

Our friend Timmy P is still battling on and has ben feeling vry sad and uncomfortable. Say big prayers for his comfort and for his family's strength.

Our Super Morgan goes to her "boom boom" doctor (cardiologist) on Monday. Say prayers for her.

Give thanks that Morgan and Braeden's little sister Danica (still in Mama's belly) is free of any birth defects and looks just perfect! =)

We're still rejoicing with genna's famil over her great pathology news...Genna and her familyl are preparign for her Make A Wish trip next week...Have TONS of fun G and family!

And last but certainly not least please pray for our friend Ramsey in Oregon. He is undergoing testing right now and we're really hoping that they all come back in his favor. Ramsey and Hadley have been buddies since they were newborns together...We love you Ramsey!

Ok...well, off to go about our crazy day...it's supposed to snow down to sea level (where we are) today in the SF bay area. Craziness. You should see the Santa Cruz Mountains...they have a beautiful blanket of snow. Our kids don't have school today or Monday so I have all five here (with braeden and morgan) and I think we'll be doing some painting and playing movie theater...thekids love to pop popcorn and set up chairs in the living room. They're so funny!

Alane...i haven't forgotten about you! I've been so busy but, I'll ty and get your package out ASAP...=/

Oh my goodness it's HAILING! The Bay Area will;certainly close down now...LOL!!! I woulnd't want to have to commute today!!!

With Love and HOPE
*Peace and Results*
Angela

Tuesday, March 7, 2006 6pm

UPDATE at Bottom...3/8/06 5pm...


http://www.GlitterMaker.com/ - Glitter Graphics


We have another stable scan!!!

Very, Very, Very Long, Frustrating, and Exhausting day...so many hoops, complications, and bologney in general...but I'll tell you about all that later...We're happy with our stable scan...

The plan is to still start chemo next Thursday...but that's a whole different talk show...=)...

Thank you for the prayers...
***Peace and Results***
Angela

*********************************************
I know many of you have been waiting for the ‘ugly” details of our Monday/Tuesday whirlwind. So, here goes. On Monday at 3:30 it all started with a phone call from the hospital saying that they had been unable to get an authorization for the MRI. VERY,VERY long story short...both Brandon and I “dealt with” the insurance company all afternoon and into the evening on Monday...then Tuesday morning Brandon took over that fight while Hadley and I headed to the hospital. Our insurance decided to send the auth for the MRI etc to medical review to determine if it was medically necessary. I feel SO comfortable knowing that a nurse who hasn’t seen a patient in years is deeming what our “best of the best” Neuro-Oncologist is recommending for our child necessary or unnecessary. UCSF agreed to do the scan without payment and an authorization after a few phone calls and a very stern”talking to” about how we would be held responsible if our insurance failed to pay...and how expensive these tests are (like I’m unaware of that...ha ha). Anyhow...we finally get that sorted out. I breathe a HUGE sigh of relief that we are going to get the scans we need to start this trial we’ve been waiting over 3 months for. I don’t get cell service down in the MRI ‘dungeon” so I kept running outside with Hadley to check in with Brandon etc. The insurance (after a LOT of pressure from various people) finally authorized the scan about a half hour AFTER Hadley was in the scanner...which brings me to our next hang-up. The MRI dept was running over 2 hours late. Hadley was supposed to go in to the scanner at 10am...so we had to be there by 9:30...left the house at 7:50am. At 12:10 hadley went into the scanner. Ugh...She was starving and crying and yelling at me...it was not good. And the clinic was packed b/c they were so behind. So...she comes out of the scanner at about 2. She doesn’t want to wake up from anesthesia...we call her sleeping beauty...haha...so I finally say..”we have to go to cardiology for an echo...she’s fine...I’ll take good care of her..” So I plop her in her stroller and literally RUN across the street to the main hospital.. The echo went fine. Hadley slept through the entire thing. They took us right in etc. Then we hurry back across the street to meet with Dr Banerjee. Hadley finally was awake and couldn’t wait to eat (19 hours after her last food or drink by mouth). So we sat and waited and she ate...then we went back to meet with Doctor B. She gives us the awesome news that the tumor is stable. We discuss the trial etc and decide that it is still very much in Hadley’s best interest to go on the study. The tumor is still...and even increasingly...”active” and needs to be treated. So, we go over the fact that Hadley would be the first child in the country to go on a higher dose than the maximum allowable adult dose. Essentially meaning that Hadley would be on a higher dose than anyone had ever been on (in this country) child or adult. Anyway...I sign the consent (crazy ,I know...but, hey, “scarey” changes as the stakes do) we are wrapping up the appt when we realize that Hadley’s new seizure medication is on the “prohibited Drug” list for the trial. Meaning that she can NOT start the trial. It takes a month to wean off seizure meds...she would have to be completely off it for 2 weeks so we were looking at a 6 week wait until we cold go back on the wait list. You can only imagine how my heart sank through the soles of my shoes. Now, you’re thinking how disappointing...why didn’t someone realize this before, right? Well, we did...and didn’t. When we decided to change Hadley’s seizure med Dr B’s office told me that she could not go on any drug that is what they call an EIA (Enzyme Inducing Antiseizure) drug. I tell Our neurology clinic this...more than once...the NP I’m talking to more or less ‘brushes it off’ but promises to look it up...when I persist (explaining why it is so important) she claims to look it up while I’m on the phone with her. She states that it is not in that family...and proceeds on. I wasn’t at home when I took the call or I probably would have just looked it up myself. Long story short she was either wrong or didn’t look it up at all. So as soon as my heart sank through to the floor...I was flaming mad. Dr. B was pretty irritated as well. Not only were we excluded form the trial but, we would have to repeat all the testing we’d just done IF we got into that trial or another one at some point. No tto mention all the craziness we had to go through with our darned insurance company...Livid doesn’t even begin to touch it. I was speechless...and ya’ll know that is rare for me. So... we sit and stare at each other, shaking our heads...fuming mad and disappointed all at once. Dr B talks to our Neurologist and expresses her ‘concerns’ and we sit some more. Long story short...we are HOPING to get Hadley started on another trial. The one we were considering a while back that you have to be able to swallow pills on. Hadley has ben swallowing her VERY small migraine med on a regular basis, we’ve already done most of the testing and legwork to get on a study, AND it looks like there is a spot open. SO, our tentative plan is to keep all our appointments for next week and start the ‘new’ trial on Thursday. Phew...

Hadley and I finally got home at about 5:30 last night. And, we only live about 20 miles from the hospital. We were exhausted...I’m losing my voice...I felt like I could sleep for a week...but, sleep didn’t come so easily. I guess I was just too wound up.

The one great point during the day was that after Hadley went in they started her IV after she was sedated and drew her labs. They brought them out to me so that I could run them up to the lab. I went and did so and grabbed a snack...came back downstairs and as I was walking back into the waiting room a couple I had “encountered’ there in the past were leaving. I can’t remember if I shared that story with you all...but this was a couple, I’d guess in their sixties, the husband was there for a scan...there waiting with a room full of children for an MRI. They usually do all the peds cases first thing in the am (b/c of anesthesia) and then do adults after lunch. Well, this couple were amongst two of the most unpleasant people I have ever come across. Here they are in a room full of CHILDREN fighting for their lives and they are grumpy beyond belief and YELLING at the receptionist b/c they are running behind. And when I say yelling I mean yelling...I was shocked...so anyhow this time...out of all the hours that we spent in the MRI center yesterday (5 total)...I was fortunate enough to MISS them being informed that they were running at least 2 hours behind. Ahhhh...it was great. =) I’ve never been SO glad to miss something before. =)

I know that ‘on paper’ this just doesn’t sound all that tragic...but...it was nearly enough to send me to a psych ward. Hee hee!

So there it is...the good the bad and the Ugly...=) Are ya sorry you asked? =)

Sunday, March 5, 2006 5:45pm

Update 8:20pm...

As of now we have no insurance authorization for Hadley's MRI tomorrow morning. Grrr...Hadley and I will be going to the hospital in the morning as planned. I'm sure we will work this out. I am just very angry that we are having to go through all this worry. Trying to set it aside for now. We will do whatever it takes to get the scan done in the morning...Please pray for us...especially for my blood pressure and Hadley's safety during the scans and everythng tomorrow. I'll update as soon as I get home tomorrow evening (probably around 5 or 6 PST)...lots of prayers until then...don't forget our new Mantra

Pease and Results***Peace and Results***Peace and Results***


small update Monday 4pm:

Thank You for the prayers for Jenna. Her family got her scan results back today and they are great...shrinking tumors and less enhancement! YAY...please congratulate them on their miracle. www.caringbridge.org/ma/jennamarcella

And...please say a small prayer to the patron saint of insurance authorizations...Hadley's MRI (with all the extra studies) hasn't come through yet. Apparently after nearly 2 years of paying for this brain tumor tricare must be gettin irritated...this authorization has to go through medical review. Oy...so...we need this to happen before tomrrow am...otherwise we'd have to cancel and reschedule which may loose us our spot on the trial. Well, our other option is to pay up front and be reimbursed when tricare gets around to it...yeah we really don't have an extra 10k sitting around right now. *sigh*...I'
m sure everything will get worked out...I'm sure it will...why did they have to call and ell me this? Also no auth on the Echo yet either..the insurance gods must finaly be rebuking us. =/ Say a prayer...I'm off to the grocery store. We're out of some essentials...we're having linguica and Eggs for dinner...comfort food...LOVE it! =)


Hi Hadley Fans,

Well, we're really in the thick of Pre Mri Syndrome now (which has become the new PMS in our house). I think that with the exception of last week's funk I'm doing ok. I feel pretty good about this scan. Everything is going to be ok. If hte scan is stable we'll take that little miracle and be thankful for it. If there is growth, well, we're all set up to start treatment on March 16th. We are going to be Ok. Still not quite sure what Ok will mean for us in the long run...but we will be Ok. Please continue to pray for us...Tuesday will be a longer day than usual with the labs, MRI, Echo and meeting. It's really hard to put into words just how emotionaly draining and nerve wracking it is to just be there and go through all of the motions. We could do it in our sleep we've done it so many times...but my heart still breaks every time we are there.

Keegan and I seem to be on the mend. I went to the opthamologist on Friday and got a new rx for my eyes. It really seems to finaly be clearing them up. Thank goodness. Keegan is fever and vomit free...Yay. And his one eye that isinfected is still pretty red etc. I'm hoping that it looks clearer tomorrow morning...poor boy. We changed his antibiotic too. For some reason this was jsut a really stubborn infection for both of us. The good news is that we haven't given it to anyone. Keegan still has it in just his one eye...and nobody else has gotten it yet. Phew...=)! But it'll clear up...and everything will be back to normal eventually.

Liam is doing good...he hasn't needed his inhaler for the past several days. =) It seems that he's FINALY more interested in potty training...yahoo...we'll see how quick we can get this done...I'm not setting any lofty goals...he's my baby and I'm not real worried about making him grow up any faster than he has to. =)

Hadley is doing well. She looks great and seems to feel great too. She is hving a lot of breakthrough seizures but that is par for the course while switching seizure meds. Nothing bad...jsut enough to make her pretty tired. She is getting to be such a big girl. She now needs a size 7 instead of the 5/6 she's been wearing for the past 2 years. =) She is chatting up a storm...she's gotten very cuddly...and she is actually swallowing very small pills now!!! This si very exciting for us...any of her meds that can't be compounded or don't come in liquid form we have to crush and compound at each dose for her so she can take it in a syringe. It's really not a huge deal it's just time concuming and it's really not that accurate. Anyway...I was getting ehr meds ready last week and noticed that her migraine pill is really small...so before I curshed it I decided to just tryand get her to swallow it. i got her a cup of Pediasure with a big fat straw and her favorite sparkly princess stickers. i explained to her that it was her "big girl" medicine and told her everything we were gonna do step by step. After that I had her stick her tongue out at me (she was more than happy to comply with that) I put the pill on it and then she closed her mouth around the straw of her cup and swallowed down the pill with her pediasure. As sson as she got it down she yelled "I DID IT!". I was so proud of her. She's done awesome every morning...only one morning she wound up chewing it b/c she let ie sit in her mouth too long and it started to disolve and freaked her out. Anyway...this is a HUGE step for her. I'm hoping this means that we won't have to compound her chemo twice a day now. Hopefully the pills/capsules are small enough for her to handle. =)

Alright off to do something...not sure what...ha ha
Thanks for checking in on us...
Keep the prayers coming...

Angela

Friday, March 3, 2006 2:15pm

**Update 6pm**
I'm going to keep this short and sweet...my attitude issues are quickly returning...I think I just need a personality swap or something...maybe brainwashing.

Hadley's spot on the trial has finally opened up. This is great...IF the tumor is growing...if not I'll have serious issues with starting her on it. The catch 22 (there always is one) is that this is a trial...we can't pass up our spot and then come back and start treatment when we're ready. You take it or leave it...if you leave it you can always put your name on the waiting list again and hope that another spot opens up in time...but that's quite a gamble. Of course so is treating a tumor that doesn't seem to 'like' being treated too (at least in my book). Anyway...my head is spinning once again over what to do. At this point we are starting the trial. Although I would REALLY like to see the scan before I made that final decision.

With all of this we are forced to 'sign away' our "freedom" once again. I can't even tell you how nice it's been not being on a 'leash' for the past several months. We were so attached to the clinic for so long...then got a taste of freedom...and now I really don't look forward to letting that go. Obviously it's a sacrifice we have to make if we are going to continue to fight this. It just makes me sad...so sad.

So our first round of appts is quite a doozey. Our next 2 weeks are as follows:

Tuesday 3/7

*9am*
Go to clinic and leave urine sample and pick up req's for blood work.

*9:30am to 1pm*
MRI, MRS and Perfusion/Diffusion scans. In outpatient bldg.

*2pm*
Echocardiogram In main hospital.

*3pm*
Appt with Dr Banerjee to review scans etc. Hadley check up. In clinic



Tuesday 3/14

*2pm*
PET scan Main Hospital

*4pm*
Appt with Dr Banerjee to review test results and check up.



Thursday 3/16

*8am*
8 hour admission to start chemo and draw hourly labs.

From there on out we will have weekly check ups in the clinic.

For the first month we'll have weekly blood draws...after that it is every other week.

Hadley will have to have an Echocardiogram every 3rd month.

A PET scan after 2 months of treatment.

And lastly an MRI every other month.

Her cycles are 4 weeks long. She takes the chemo by mouth twice a day and has no breaks or "off days".


Please pray for our family. This is hard on all of us. I'm a little nervous (you'd think I was new at this). Please just pray...that this works...that this is not hard on my baby girl...and that I can feel more sure that we're doing the right thing. This whole phase 1 trial thing kind of has me freaked out. Just pray for peace and results...peace and results...my new mantra...=)

Thank you for checking in on us...
Angela











Hi Hadley Fans...

I really do want to thank all of you for all the great Guestbook messages. As encouraging as your words are it is very important for me to remember and realize and HOPE that Hadley's battle is not in vain. That no matter what the outcome Hadley has touced hearts and lives...taught lessons...and hopefully has aroused a desire in people to help find a cure for Brain Tumors and Autism and Pediatric cancers and illnesses of all kinds.

There are a lot of hard things about have a chronicaly ill child...one of them...for me...has been that children haven't been given the opportunity to make their print or leave their mark on this world yet. Good or bad...they just haven't had their chance. Thank you for reminding me that Hadley is leaving her mark...even at the ripe old age of 5 she is leaving her mark. =)

Alright...well, there's my 2 cents worth for the day. And it's probably not even worth that...=)

Thanks you for the prayers for Genna-her family got her pathology results back yesterday...and it's great news...please go by and visit her if you can...congratualte them on their miracle. caringbridge.org/nj/gennahenna

Thank you for praying for Jenna-her scan was this morning and she did just fine. Hopefully they'll get their results on Monday...keep praying for good results! =)
caringbridge.org/ma/jennamarcella

Please pray for Timmy...he just celebrated his 10th birthday...his family and all who love him are praying for his miracle...he is in his final battles against a brain tumor.
caringbridge.org/nj/timmyp

Please pray for Ryan who is nearing the end of his battle. He's fought so hard...please pray for a peaceful passing and for comfort for his family.
***As soon as I finished this update I found out that Ryan has passed on...***

Ryan B.

3-22-87-----3-3-06
Forever 18 in our hearts



And as always...please continue to rpray for our family...
*Hadley's MRI on Tuesday at 9:30am
*MRI results on tuesday at 3pm
*Keegan and Mama's eyes to get better! =/
*Please pray that we get our "orders" soon...so that we can start planning our move or make neccesary school arrangements etc to stay here...this is a very stressful time for military families...knowing that we could be sent anywhere the CG needs us...and on very short notice at that. Hopefully we'll be hearing soon.

Alright...thanks ya'll...you really do help keep us going! Oh, and I did find an 'upside' of Pink eye. ALthough I doubt they'll make a movie of it...Ha ha...anyway...when your eyes are already beet red and watering and nasty...It's a lot easier to hide it from the kids when you're crying. See...there's an upside to everything. =) RIGHT?!? =)

With Love and HOPE
Angela

Thursday, March 2, 2006 3:35pm

Ok...so I realize things have been kind of heavy "around here" lately. Soooo...I'll share a funny dialogue with you all. =)

6:55pm On the Foxes couch. Commercials playing in the background. Hadley's sitting next to me and Brandon is sitting opposite me. Brandon turns to me and asks..."Is Hadley going to school tomorrow?" No sooner than the words were out of Brandon's mouth Hadley litteraly whips her head around looks in his direction, shakes her head emphatically and says..."Yeah...YES Daddy...I go to school...Hadley goes to class...Yeah...tomorrow!" We laughed really hard and she says "Is that funny daddy? Is that funny Mommy?"...
I guess her day at home was as bad as mine. You think she might be trying to tell me to lighten up? Poor girl. So, unless her eyes are gunky tomorrow she is going to class. =)
I have an appt with an opthamologist tomorrow morning at 9:30. And then I'll likely devote the rest of the day to changing my attutide. I have no idea how I'll go about doing that...but...I can try. =) My usual last ditch efforts at attitude adjustment are (in no particular order): Ben and Jerry's, Exercise, Retail Therapy and if all else fails...well, a bubble bath and a drink. LOL...None of those sound particularly feasible or enticing right now. =) Ok...have a night...have a morning I'll update if the need arises. =)

~the Mama~






Hi all...

I know I'm in a 'mood'. Thank you for all of the wonderful Guest Book entries. It is nice to hear from all of you. I'm waiting for a friend to send me back a link so that I can post a little story. Another CaringBridge mom wrote a little story kind of explaining how it feels to have so many visitors and very few GB entries. I know it seems silly...a small thing to stress over. But for some reason it doesn't feel small...not this week anyway. As soon as I get the link and permission to use the story I'll post it here...or at least a link to it.

Keegan and I are still fairly miserable. Keegan is now running a fever (last check was just over 101) and vomitting. He said he felt sick and didnt' want to eat...so he drank some juice and then a few minutes later it came back up. Then I noticed he had goosebumps and sure enough felt warm...so I took his temp and he has a fever. Now we're watching for swelling in the eye to make sure the infection hasn't spread to the tissue around the eye. I'm hoping that this is just whatever Liam had last week. But...it seems odd to have nearly a week between the end of and the onset of the other. hmmm...anyway...he has no cough...just fever..can't keep anything down and pink eye...LOVELY.

My eyes are killing me...they don't seem to be getting any better. I told myself that if they weren't looking better by 4 I'd call my docs office and make an appt for tomororw. I've been using the antibiotic drops for 26 hours now...my doc said that I should see a very quick response...not seeing it or feeling it. Blech. I have a headache...and my neck and shoulders are achey...no doubt signs of stress and tension.

Only 4 days until MRI and I have a highly contagious nastiness in my eyes..Keegan has something...who knows what and the same nastiness...Hopefully Hadley won't get it and I'll be cleared up so that I can go to the MRI. As nerve racking as it is to go...I can only imagine what a disaster I would be if I couldn't go. Oh goodness I don't even want to think about it. I seriously think I would make Brandon and Dr Banerjee put me on speakerphone during the appt. My heart would break not being able to hold Hadley before anesthesia...not be able to kiss her forehead and tell her that I love her before she goes in to the scanner, and not be there to soothe her while she's waking up. I would nearly stroke out...seriously. All control issues aside how could I NOT be there for my baby. Oy...

Ok...so yeah...I may be a little emotionaly unstable right now. ha ha...what else is new. Thank you for checking in on us and for all the great GB messages. It's nice to meet our "first timers" and GREAT to hear from our 'old' faithfuls.

With Love and HOPE
Angela

Wednesday, March 1, 2006 2:01pm

OK Ya'll...I hate to sound pathetic here...BUT. You all are doing a great job of coming nad checking on us. Really. In one week we've had 1788 hits. However...our guestbook has been signed 17 times. I realize that we have a lot of repeat visitors etc. But there is a snmall handful of people who routinely sign our guestbook. Where are the rest of you? Who are the rest of you? =) With this last week's stats only one person in every 105 visitors signs the guestbook.

This week especially is really tough for us...MRI is in a few days etc. Please let us know you were here...drop a line of encouragment...we need that from time to time. =)

Sorry to sound whiney...I know I am..I really don't feel good...I'm tired...I'm stressed...and nobody loves us this week! =) Headed back to bed so that I don't infect the rest of the family with my yucky pink eye nastiness. Taking Keegan with me. TTFN!








For the love...I have pink eye...a very nasty case of pink eye...in both eyes. NOT fun. I woke up and called Brandon (who was able to leave work to help me...I can't very well go into the kids classrooms etc...Anyhow, I went to the doctor this morning got a prescription and will hopefull ybe back to myself by Monday. =) Keegan came home from school at 1 with green gunk in his eye. It is getting redder very quickly. We're waiting for a call back from the pediatrician to see if we have to take him in...or if they'll jsut call in a rx for us. It should be TONS of fun trying to get drops into his eyes. Super times. I just pray that Hadley and Liam don't get it...they won't really understand if we try to explain to them. At least, even though Keegan will not like it, he understands that hsi eyes are 'sick' and they need meds. The other two...not so much. Ack! I'm fairly certain that we'll all have it by the time the weekend rolls around. Oh happy day. So...we are back to hyper germa phobia in our house...the alcohol gel bottles have taken back their posts...hand washing is our most frequent activity...and everything we use is disposable now. I'm washing bedding and towels as we speak...I did mine this morning. I HATE this. Blech.

So, other than that everything seems to be fine around here. Hadley's a little swollen on her left side. I'm currently looking in to how to help that. I'll ask Doctor Banerjee about it.,..and I'll also talk to our OT at school. It sounds though, like resuming her simple range of motion exercises may help a lot. I had been doing them since her first surgery...but they really started bothering Had so I stopped and kind of fell out of the routine. I figured that just being a kid and not knowing when to stop and slow down...she would get enough movement etc to keep anything like that from happening. Although I mostly feared contractures. I guess that's not the case. Hopefully I haven't done anything (or rather NOT done...)that can't be reversed. I really didn't think they were helping that much...guess you never know till you stop doing it. =/

Alright...
I'm gonna go wallow in my eye pain and millions of loads of laundry...
Angela

Monday, February 27, 2006 8:30pm

Hi all...



No, Hadley's not back on chemo...she found a bag of masks...and...well, she likes masks. Ha ha. I just thought it was ironic that the very things I worry about (making her stand out by wearing a mask etc.) she takes in stride...and even enjoys. Ha ha!

So...Hadley is no longer on chemo...had her last dose on 12/1/05...today, however, her hair started falling out in fairly large clumps. What?!? Looks like it is probably the new seizure med. It's a pretty common side effect with these kinds of drugs. It was really bad on Depakote. Anyway...I hope it slows up. It's not really that big of a deal...but I was so excited that her hair was finally starting to fill back out and look 'healthy' again. Oh well...Hadley doesn't care...why should I worry about it. =)

We're still just hanging out...feeling fairly normal...although, I've had several eye opening moments in the past several weeks that have reminded me that no matter how Hadley's health stabilizes we will never be 'normal' again. That's not neccesarily a bad thing...at least not in ALL aspects. I have grown a lot...and we deffinitely view things differently than your average citizen. Not in a superior way...just different. We still worry about silly things and want things that we can't afford that don't really matter...we're no better than anyone else...but, we are different. We're like the adult version of the kid who was forced to grow up way too soon. The lessons we are learning we shouldn't have had to face until we were caring for our elderly parents and maybe even grandparents. And, even then these really are WAY different lessons... But instead we are learning them with our child. It's not neccesarily a bad thing..we've gained a lot...but it is sad. We are better for it in a lot of ways...you just wish that the reason behind it was different. Anyway...it can be lonely...or feel lonely anyway. I never know how much of it is me distancing myself andhow much of it is others just 'not getting it' or not wanting to 'get it'. Either way I wind up feeling excluded. I am really looking forward to moving to Portland. It will do my soul some good to get involved in a church family...the kids schools...charitable organizations like the Hope House. It will do me a lot of good to help others instead of wallowing in my own worries. Sometimes I need a big slap in the face that my life isn't the only one that has taken a sad and painful detour. I need to help others. I need to teach my children to help others. I need them to know a sense of community...i'm not doung a very good job of teaching them that right now. I can't wait to be more active and feel more 'at home' socially.

Anyway...that was a weird tangent. Thanks for stopping by. Please continue to pray for Liam. He still sounds really crackly and has a nasty cough. I was a lump on a log today and didn't even call and make an appt. I'm totaly drained. I need to make an appt for myself too. Anyway...we're using his inhaler at least a couple times a day now. he knows when he needs it. That's sad.

Please continue too pray for Genna. She is healing from surgery very well. She has a post op appt on Wednesday and hopefully they'll get some more news. Pray that it is good.

Please pray for Jenna...she has an MRI next week too. Pray for clear scans. =)

Pray for Steven he also has an MRI coming up...

Lots of MRI's...lots of chances for Miracles...lots of chances for heartbreak...all of these families deserve the miracles. They are all families who see everyday miracles for what they are...miracles. =)

Thanks Ya'll

Sunday, February 26, 2006 8:30pm

Hi all...first I ahve the coolest thing to share with you...especially with my sincere love for both autistic children and basketball. Thank You Susan...soooo much for sharing this with me!

Autistic Basketball Player Causes Mayhem

You HAVE to watch this...it is a news story video clip about an autistic HS boy in New York who served as the faithful Team manager for years...then in the last 4 mins of (I think) the team's last home game the coach put him in, on a whim. This amazing kid scored SIX, yes SIX, 3 pointers IN A ROW in the last FOUR minutes of this basketball game (for a total of 20 points for the game)!!! Wow! KUDOS...huge, larger than life Kudos, to Jason McEllway and to Coach Johnson. Way to Go Jason...Awesome work!!! Coach Johnson...Thank you...Thank You so much for believing in and supporting one of 'our' kids. I have to admit that this tough as nails mama cried like a weenie while watching it...3 times. =) Aweosme...

Anyway...we had a good weekend. A pretty laid back and relaxing weekend. Cousin Desiree came and staryed for the weekend. She's 10 (will be 11 in April) and is a great help with the kids. She plays with them and reads stories to them etc. They all love her and it was fun having her here.

We also went to some friend's house for dinner and drinks on Saturday night. It had been planned for a while and Liam was feeling good so we decided to jsut go. I'm glad we did. I got to hold their newborn, Caleb. ooooooohhhhhhhhh my. It's been a long time since I've had an infant coo and smile at me, It's a good thing that we made a "permanent birth control choice" a few years ago. =) He's sucha doll baby. Keegan got to play with his girlfriend Bianca...and Liam and his buddy Ethan hung out and acted like Monkeys. Hadley had a great time rifling through all Bianca's dress up clothes. At one point in the evening I went upstairs to check on her and she was bare booty naked. LOL...She was trying to really get dressed in the dress up clothes. LOL. Anyhow...too funny.

We did have an eye opening moment with their stairs. We've been looking online at houses in Portland. Obviously we've been focusing on one level 4 bedrooms...But, we've looked at houses with stairs. I thought that maybe we could get away with a house with stairs again. Well, Hadley fell down theirs. It scared the heck out of me. I mean fell down 2 flights of stairs and then just laid at the bottom barely wimpering. Oy...I just knew she'd paralyzed herself or something. SO...we're really focusing on a single level again. Oy...

Well...Thanks for stopping in and checking on us. Please remember to leave a message in the guestbook...we love all of them...it's great seeing whose been here. =)

Alrighty...have a great week.
Angela

Don't forget to be praying for our upcoming MRI...March 7th is right around the corner. Oy...

Saturday, February 25, 2006 11am

I was looking through pictures again today...I know I've said it before...but, it just amazes me how fast children grow and change. Here are pictures of all 3 kids in February of 05 and this February...Craziness. My babies are growing up. Craziness...


Hadley February 2005

Hadley February 2006

Keegan February 2005

Keegan February 2006

Liam Februaury 2005

Liam February 2006






Well, Liam has been surprising us. His fever is virtually gone. It was 99 this morning with no Tylenol/Motrin for 13 hours. Pretty stinkin' good. =) His cough is still "quite alarming" (as both the docs who've seen him have said)...but I think we should be fine with just his inhaler to help open things up etc. As long as we have his inhaler and he doesn't stop coughing we'll be fine. I followed the docs directions and called in this morning to update them. The doctor JUST called back and said that if I feel comfortable with just his inhaler he'll agree to that. He's concerend that the cough is a little worse...but I promised to call if it isn't sounding better tomorrow. It scares me when he gets sick like this. I'm planning on making Keegan a well child appt. (I still haven't doen his 4 year check and shots...oops) and plan to make one for Liam at the same time. I think it's time to disccuss a daily med for him to try and prevent this from happening. At his last appt his doctor and I discussed a daily asthma med...the inhaler is good but, we'd like to prevent this not help it once it's already taken over. Anyhow...we'll see how that goes. I'm also hoping that the NW air (if we do, in fact, move) will give his poor little lungs a rest. =)

Anyway...thank you for the prayers...I can honestly say he's never rebounded from something like this quite this quickly. =)

I started lookign at Easter clothes for the kids last night. I love Easter clothes...=) Land's End Kids Catalog has some cute stuff this year! =) We're pllaning on being in Portland for Spring Break. To visit, Househunt, school hunt and hoefully doctor hunt. I'd like to have a pediatrician in place BEFORE we move because ALL of Hadley's specialists have to go through our PCM. So, before we can see a specialist we have to be reffered by our pediatrician. Oy...Obviously if worse comes to worse there's the ER...but, I hate the ER...HATE the ER. I've earned my hatred for the ER, though. LOL.

Well, it's beautiful out today. I think we'll take the kids for a walk...let Liam get some 'fresh' air. Hadley's eager to ride her trike. Keegan's always happy just to get out and run around. LOL...

Dont' forget to be praying for our upcoming MRI...it's really snuck up on me...can you believe it's only 10 days away. Time flies when you get a little miracle and can kind of breathe normally for a while. I can't believe it's already been 6 weeks though. Oy...gotta love those 6 week cycles...ugh.

With Love and HOPE
Angela

Friday, February 24, 2006 1:35pm

Hi all. We went to the ped and Liam's lungs still sound clear. His fever is down to 101.5 (with both Mortrin and Tylenol). He has vomitted a few times all but once he coughed until he gagged...the last time I'm not sure what happened. He may just have the flu (although he had the flu vaccine)...but no matter what the cause he doesn't "do" coughs well. So...we have instructions to call the peds office in the morning...if his fever hasn't started breaking and if his cough isn't improving then they'll call in prescriptions for him (we don't have to go in). I'm assuming he meant nebulizer treatments, antibiotics and steroids. This is the usual routine. We didn't get to see our usual ped. We had a choice to sit there for another hour and wait for her or see another Doc. So we saw the other doc...I have a feeling that if we'd seen our usual doc she may have started treatment today. Who knows though...tomorrow is day three so, she may have waited to see if he started feeling better on his own before treating too. Day three is sort of the day that they would expect to see him ether get better or not. Does that make sense? I'm rambling. LOL I'm a little tired. Well, my boy needs a bath and another pair of fresh PJ's. I'll update later tonight or tomorrow morning.

Love to all...
Angela

Thursday, February 23, 2006 1:10 PM

10:45am

Liam did Ok last night...he slept well, at least. His cough is a lot worse...it's horrid. We've continued to rotate the Motrin and Tylenol (so he's getting one or the other every 2 hours)...his fever is still 102. Sigh...I'm worried. My 'perfectly healthy' boy seems to get sick an awful lot. He actually hadd a way better winter this last year than the years past. I should have seen this coming. We have an appt with our ped at 11:45. Hopefully we'll be able to do something...at least treat more of the symptoms than just the fever. It's just so odd how he got sick so fast. Anyway, I'll update after we get home from the doctor. Please also pray that Morgan and Hadley do NOT get this...I can't imagine that this cough wouldn't interfere with her MRI.


10 PM...

Well, I wound up taking Liam to Urgent Care tonight. He had a stubborn fever that spiked at 104.2! Oy...he got so sick so fast...anyway...his lungs sound ok...we got his fever to break...he's up still and feeling rowdy. Ha ha. We're going to bed after his next dose of Tylenol at 11pm. We're alternating Tylenol and Motrin. He won't swallow the liguid stuff...but LOVES the orange flavored chewables (asks for more...)go figure. Anyway we're alternating Tylenol and Motrin to keep the fever down and will call and make an appt with Doctor Parker tomorrow. Hopefully things will improve and not get worse. Poor Bubba. Keep the prayers up...=)












Hi all...

Congrats to Alane for being our 100,000 th visitor (I got your email and keep trying to get back to you...h aha...it may have to wiat until daddy gets home though.) Can you believe that...100,000...One HUNDRED THOUSAND? I am a very blessed and thankful Mama. Hadley has touched so many hearts...thank you all for being so caring and diligent in following her journey. =)

We need some prayers for our littlest Fox. Liam had a rough morning at school. they called me and said he just couldn't stop crying nad seemed very overwhelmed. So I went and spent the last littel bit with him. I pinpointed some sensory issues that he seems to be facing there...BUT...I think his issues were exagerated today because he is sick!!! No! He had a pretty decent winter. On;y one round of nebulizer treatments...one steroid shot...one round of antibiotics. A HUGE imporvement over hte winter before last. Now...BAM...all of a sudden...I mean literaly 0-60 in 2 seconds flat...101 fever and a horrendous croupy sounding cough. He won't eat, won't drink, and insists on sitting on the couch with a blankie and bink and ME. I feel SOOOOOO terrible tat i took him to school...but, I swear he really was fine at 9am...he ran to school. In fact, he ran HOME too?!? And now less than two hours later he's a totaly different kid. Scares the heck outta me. I'll be calling the ped in a few minutes to try and get an appt for the morning. Hopefully we'll be able to get in. Ugh. Or, hopefully he'll improve instead of get worse over night and then we can cancel the appt. I probably sound paranoid...but he gets so sick so fast when it's in his chest...he just can't shake this stuff. Poor bubba...Please say prayers for my buddy. =(

Alright...I have a load of laundry to fold and a sick boy to cuddle...=(

Taminda...call me back...lol...I tried calling you...=)

Love,
Angela

Tuesday, February 21, 2006 9:50am

I just wanted to say that this afternoon I realized, after looking at all the great pics of Hadley on her new trike, that she wasn't wearing her helmet. I have no idea why I forgot it...probably just that I was excited to get to school and give it to her and ran out the door without it...but I never even realized it...until tonight. Now, THAT'S quality parenting. *ugh* Just wanted to tell you all that Hadley DOES own a helmet and I think this is the FIRST time she's not worn it on her bike...and I captured it (beautifully) on film. LOL...Oy!





I got bored with the music again...haha...well, that and I heard this song on the radio this morning and it hit me a little differently today than it has the other million times I've heard it. Ha ha. Anyway...the lyrics are above...but I'll copy them here too.

The Middle
By: Jimmy Eat World

Hey, don't write yourself off yet
It's only in your head you feel left out or
looked down on.
Just try your best, try everything you can.
And don't you worry what they tell themselves when you're away.
It just takes some time, little girl in the middle of the ride. (over, and over)
It'll will be just fine (over, and over), it'll be alright (alright).
Hey, you know they're all the same.
You know you're doing better on your own (on your own), so don't buy in.
Live right now.
Yeah, just be yourself.
It doesn't matter if it's good enough for someone else.
It just takes some time, little girl you're in the middle of the ride (over, and over)
It'll be just fine (over, and over), it'll be alright (alright).
It just takes some time, little girl you're in the middle of the ride (over, and over).
It'll be just fine (over, and over), it'll be alright (alright).
Hey, don't write yourself off yet.
It's only in your head you feel left out or
looked down on.
Just do your best, do everything you can.
And don't you worry what the bitter hearts are gonna say.
It just takes some time, little girl you're in the middle of the ride (over, and over).
It'll be just fine (over, and over), it'll be alright (alright).
It just takes some time, little girl you're in the middle of the ride (over, and over).
It'll be just fine (over, and over), it'll be alright (alright)

This song really hits me with Hadley. I don't know what kind of sittuation it was written for...but, I take a great message from it. One of Hadley's 'disabilities' is that she doesn't engage, communicate and/or relate to others the way other people typically do. In some ways this is a blessing in disguise. Many people have said "it really is a blessing that Hadley doesn't understand what is happening to her". Yes it is. It does hurt sometimes that we can't comfort and reassure her. She can't ask us questions etc. BUT...she is doing "Better on her own"...as the song says. SHe is so happy, so loving, so colorful, never ashamed or embarrased. You're in The Middle of the Journey Hadley Bug...and you're doing great...We'll try our best...try everything we can...and in the end everything will be jsut fine. No matter what form "fine" comes in. Everything will be alright. Hadley really does do better on her own. She NEVER worries about all of the things that I worry for, for her. Nothing seems to get her down. I'm really working on taking this cue from her. I'm trying so hard to get it out of my head that people look down on her and see her as broken or less than whole. She really is so much more than most people see. Their loss...don't worry about it Mama...just do your best...help me do my best...and move on...no worries. I really think that if she could...that's what she would tell me. Let's not worry about the bitter hearts...just live right now, be yourself...it doens't matter if it's good enough for someone else!!! =)

Ok...so there's Mama Fox's enlightenment of the day. Ha ha...Only I find enlightenment in Jimmy Eat World/Weezer/Bob Marley etc...LOL! =)







Here are a few photos from this afternoon. We took Hadley's bike to her when we picked her up from school. She does love it...and is able steer it a lot easier than her car. Not that she always does...she gets so distracted...lol. Anyway...I figured since I was telling you all how wonderful she's been doing/looking I'd share some pics with ya. Enjoy!







Have a great afternoon!Just a reminder that our hit counter is at 99,459. If you are visitor # 100,000 please leave a guestbook message and send me an email to let me know. I'll mail you a framed picture of our Hadley bug along with a grey "sharing HOPE" BT awareness rubber wristband. We really do appreciate all of your love, support and concern. 100,000 hits...can you believe it? Craziness...=)

Ok...so I know I've been slacking on the updates. Hadley has been doing amazingly well...it makes me very hopeful to see her this way. It hurts that as soon as I feel that huge pang of HOPE I feel this tremedous sense of weirdness for feeling HOPEFULL. It sucks knowing that the odds are stacked against you. BUT, Hadley never does anything that anyone would expect her to. =) She looks so healthy...so chubby, so alive and so vibrant. Seriously she looks better than she has in probably 2 years. It's wonderful...that's an understatement. Do I dare let my guard down? Sure why not...stranger things have happened than our Hadley actually doing well, for a change, right?!?

She is tolerating the Trileptal VERY well so far. We are just now decreasing her Keppra. We took off 2 mls of the 8ml's a day. THe trileptal has been doubled as well. Every Monday her seizure meds will tweak a little...the Keppra will go down and Trileptal will go up. This is week 2 and so far she's doing great. We've seen BIG changes in her moods etc. We really seem to be getting our sweet girl back! I couldn't be happier.

Liam started his little tikes class today. *sniffle* He was really looking forward to it right up until we stepped in the door. I had to leave my baby crying and reaching for me...it breaks my heart. BUT, on the upside it does make me feel better. I still have doubts about him possibly being on the very high end of the autsim spectrum. He is well beyond his age in a lot of areas. He DEFFINITELY has some sensory issues...and he doesn't seem to feel pain the same way we do. There are just some 'flags' that as a mom who has 'been there done that' really jump out. Probably not anything that most people would even notice. But, Hadley NEVER had a problem with us leaving her anywhere. I remember feling like a terrible parent because wehn she was just shy of a year old I took her to a bible study ...I dropped her off in the nursery and all the other babies were crying for their parents and clinging to the door. I sat Hadley down and probably made a bigger deal of saying goodbye than I should have and nothing. Not a peep. She was happy to see me when I picked her up...but, never looked for me through the whole hour plus. I just knew I must be doing something wrong. Why wasn't my child bonding with me like the other babies were? Time would show me that she and I DEFFINITELY share a bond..it is just very unique. Hadley does almost nothing like other children. So...short story long...hee hee...as much as it hurts it does do my heart good to see that Liam is typical in that aspect. =) Odd, I know.

We spent the weekend putting together our new bedroom furniture and decorating our room. I'm quite pleased with it. It's pretty stinkin' cute. =) I also made a duvet cover out of some ALexander Henry fabric I've been dying for for a lonnnng time. I finally bought it in Hawaii and made the duvet yesterday afternoon. I actiually still have to do the back...I shorted myself on the solid fabric...ooopps. ANyhow. Hopefully I can finish that today. =)

Hadley's new trike came in yesterday so after we pick Liam up the boys and I are going to pick it up. I'm very excited. =) Hadley's gonna LOVVVVVEEEE it. =)


I also ask that you say some HUGE prayers for our friend Genna this week. SHe is having surgery today. They need to biopsy. I'm not at liberty to really go in to it...but much like Hadley her tunmor is just not doing what it should do and things are looking a little grim. Miracles needed...please say prayers!!!

CONGRATS to Auntie "Goo" and Milan who got married on Valentine's Day! =)

Alright...much to do...love to all...thanks for checking in on us...Miracles Happen...pray for them.

With Love and HOPE
Angela

Saturday, February 18, 2006 9:45

Good "Morning" All,

I'm feeling MUCH better today. It's amazing what some sunshine, a house noisey with 'jedi masters', 'storm troopers', and 'Princess Jasmines' does for the state of the heart. Not to mention some extra prayers. a freind from my PBT board posted a great quote that really hit home:


"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us"
Joseph Campbell


We're a work in progress...I'm a work in progress. Thank you so much for the thoughts and prayers. =)

With Love and Hope
Angela



Just a reminder that our hit counter is at 98,764. If you are visitor # 100,000 please leave a guestbook message and send me an email to let me know. I'll mail you a framed picture of our Hadley bug along with a grey "sharing HOPE" BT awareness rubber wristband. We really do appreciate all of your love, support and concern. 100,000 hits...can you believe it? Craziness...=)

Friday, February 18, 2006 midnight...

Just a reminder that our hit counter is at 98,700. If you are visitor # 100,000 please leave a guestbook message and send me an email to let me know. I'll mail you a framed picture of our Hadley bug along with a grey "sharing HOPE" BT awareness rubber wristband. We really do appreciate all of your love, support and concern. 100,000 hits...can you believe it? Craziness...=)

All is "well"...no worries.

Just a 'tired' mama asking you all for prayers. Amidst all sadness in our lives there is a LOT of love, happiness, smiles, and laughter...for these things I am very thankful. How would I get through each day without the giggles (even the mischevious ones) of my three favorite kids on earth? Most weeks, day, hours, minutes it is easy to suppress the sadness and constatn worry of losing our 'baby' girl. Some doays it isnt' so easy. Sometimes there is a logical explanation for it...some days there is none. We still have a few weeks until MRI...It's been a while since I've started getting nutty about scans this far out. WHo knows what it is...but my heart is broken and I am terrified. I can't really explain it. Please pray that this feeling goes away and that we have lots of time this weekend to make loving and happy memories...and forget about the sadness, for now. Life is too short to be this sad and anxious. Pray for lots of kiddie giggles. =)

The Mama

Thursday, February 16, 2006 6:20pm

Hi all...

Just a reminder that our hit counter is at 98,435. If you are visitor # 100,000 please leave a guestbook message and send me an email to let me know. I'll mail you a framed picture of our Hadley bug along with a grey "sharing HOPE" BT awareness rubber wristband. We really do appreciate all of your love, support and concern. 100,000 hits...can you believe it? Craziness...=)

Nothing really to report. Life is pretty mellow right now. Hadley seems to be pretty stable. Her moods are MUCH better, no migraines, not a ton of seizure breakthrough etc. We really are thankful for times like these. We are never able to forget all that is going on...but it is a lot easier to feel a teensy bit normal when things are so mellow. Of, course I really shouldn't say anything 'out loud' about it...ha ha...now we're jinxed.

I signed both the boys up for a new session of Preschool classes. They go to the Armed Forces YMCA here in military housing and they do 3 month sessions. Anyway, Keegan will continue on with his MWF 10-1 schedule and Liam will go T/Th from 9-11. Liam is VERY excited about this. I hope he realizes he's going to the Y and not to Hadley's school. He is absolutley in LOVE with Hadley's teacher Miss Gina. You should have seen him turn red when he gave her a valentine on Tuesday. Too sweet. We've talked about it...and I think he understands. We'll see. =)

We have a pretty quiet weekend...the kids don't have school tomorrow or Monday so I'll have 5 kids between the ages for 5 and 2 from 9:30-2:30 tomorrow.
y three and my friend Angela's two. =) It sounds a lot worse than it is. =) The kids are getting along very well...and as long as we have activities and can play outside the time goes by pretty quickly. =) I have been having flashbacks to m preschool teaching days though...=) Mealtimes=lots of lunch and never enough Clorox Wipes. =) Good times...busy times...no time to feel sorry for myself times...=) Then Brandon and the kids are all off on Monday...Braeden and Morgan's daddy is off too so they'll spend the day with him. Maybe we'll do something on Monday. Maybe not.

We've been thinking about buying a new car. We originaly wanted a Tahoe...welll I'd REALLY like a suburban...but the paymenets are way out of our price range. Anyhow we recently realized that the Trailblazer EXT is a better fit for us. Anyway...we've decided to do the responsible thing and wait until after we move and are settled in etc. So...hopefully this fall I'll be able to get that new car. =)

Which leads me to other family news. I am planning on opening a small business when we move. Nothing huge...just house cleaning. Not exactly my dream job...but in certain ways it is. I'll get to make my own schedule and be my own boss. I can work just when the kids are in school etc. And you actually make decent money when you're self employed. It's very cheap to start up and get liscensed/bonded/insured etc. So...there ya have it. Eventually I may get brave (bookkeeping wise) and hire a few people to work part time as well...who knows. I guess we'll see how it goes. I
m pretty excited about it though. =)

Well, Like I said...it's been pretty boring around here. =) Thanks for checking in on us! Less than 3 weeks till MRI...OY! Please keep praying for all of our friends. Lots of miracles needed...they do still happen...let's boldly ask for them!

With Love and HOPE
Angela

Monday, February 13, 2006 10:56 PM CST

http://www.GlitterMaker.com/ - Glitter Graphics

Hi all,

Happy Valentine’s Day!!!

We’re still here...alive and ‘well’. Hadley’s moods already seem to be improving greatly. We’ve taken her off the B6 but have carried on with the Magnesium. Her teachers have noticed huge differences. I think we definitely found our culprit. A ha! So, we had to wait for her new seizure med to be ordered...it came in today...so NOW we are officially weaning off the Keppra. Hallelujah!!! It’ll take about a month to wean her completely off. Cross your fingers (and your toes) that the Trileptal keeps her seizures under control!!!

Hadley did have a very wobbly day at school. Her afternoon teacher said that it was really kinda weird. One of the times she fell she was just standing in front of the sink washing her hands and she just fell over. Boom...one minute she’s washing her hands and a second later she’s in a pile on the floor. This happened several times today....both while she was just standing/sitting and few times while walking etc. She’s pretty bruised up. Poor girly. Hopefully she has an easier time tomorrow.

Speaking of having an easier time...I’m doing ok...but I’m just kinda bummed. All of the feelings and emotions come in cycles. Some of them are provoked sometimes not. I had a “run in” with one of the staff members of Hadley’s school today. I spare you all the details because I feel like a broken record repeating it all...and it just makes me angry all over again. But, it involves a handicap parking place in front of the school and him parking in it and then being horribly rude to me about it. Come to find out he is a satellite site director for the Child Development Center where Haldey’s Special Education program is housed. He isn’t the director at her site but the one about a mile or so away. I am going straight to the district with this. I don’t know who this man is used to talking to....but, it is clearly not self respecting adults...and I HOPE he has VERY little or no interaction with the children. Grrrr...so, if I may get on my soapbox for a second...Please, if you don’t have a handicap placard don’t park in handicap spots. Moral issues aside...it’s unlawful. Ok...soapbox moment over.

Luckily I was able to get past that bad start to my day (eventually). We did some painting and made some valentine frames during the day. When Brandon got home from work my friend Angela and I went down to the CG base pool and swam laps. I felt like a nearly beached whale at the time...but I feel great now. The burning is a good thing right? I ditched my workouts after Hawaii and I’ve been really feeling the effects...not to mention not losing any weight. Ugh...so...it ended up being an OK day. =)

I’ve been digging for more research on tumors like Hadley’s. It isn’t very often that new research papers are released that pertain to Hadley’s BT issues because hers are fairly unique. I recently found a few papers and have sort of nosed around a bit. None of the information is very encouraging. It’s not horrid by any means...but it’s not good either. =( To be quite honest...I’m worried about our next scan. I always am. But I know that there is no medical reason for her last scan being stable. I know what can happen on the next one. It’s a lot more likely to be ugly than stable again. I know that I an supposed to HOPE and pray for the best. But we have to prepare ourselves for reality to. Not worst case scenario...but reality. I’ve come to realize than honestly I don’t even think that I can imagine worst case scenario after watching what some of the other BT families go through. I really don’t think you can ever truly imagine it or prepare for it in advance. Anyway...we’re still rejoicing...but, we know that the other foot will always fall.

I know it sounds like all doom and gloom here. It’s not. Really. The sun is shining...it’s gorgeous out...we’re cleaning up, organizing, getting rid of stuff in preparation for our probable move back to the NW...and really looking forward to our trip to Vegas. We’re getting our tax return on Friday and I’m going to IKEA and finally buying us a bedroom set. We’ve been married almost 6 years and have never owned a bedroom set. LOL...I love Ikea...it’s an addiction I guess. =) I also ordered Hadley a Trike for kids ages 5-8. She is no longer able to steer her little pedal car. The steering wheel is just too hard for her to turn. They have tricycles at school and she does really great on them so I decided that she needs one. It’ll be in on the 22nd. I’m really excited for it to get here...she’ll love it! =) I bought an easel and paints and stuff this weekend. I’d been wanting to get one for quite a while...and finally did this weekend. The kids LOVE it. I love watching them have fun. Not such a great deal of fun to clean up after..lol!

Please keep praying for our BT friends. Some are doing ‘well’...some not so ‘well’ and the vast majority of us have no idea how we’re doing or how we’ll be doing tomorrow or next week. These kids are amazing they all deserve a miracle.

Go by and check out the Great news on Morgan's Site... www.morganfaith.com
Thanks for checking in on us. Have a wonderful Valentine’s day!!!
With Love and HOPE
Angela

Saurday, 12:05 am 2/11/06

Hadley's singing/acting debut

You have to check out the above link if you havent' already! =)



So...a new update. I wanted to get the negative crud off the main page and into the history where it belongs...LOL! Hadley had a much better day at school today. I can't imagine the magnesium would already start having an effect but, I guess stranger things have happened. Or maybe she was just feeling better today...or maybe the planets were all aligned in Hadley Land...who knows. BUT...she only TRIED to hit one child today. Her teacher caught her mid swing and asked her what words she wanted to use instead. And Hadley, in true Hadley form, yelled at the top of her lungs..."I'm ANNNNGRRRYY!!!" Wow...you go girl. Nobody was sure what she was angry about...but we caught her mid swing told her to use her words and she was praised heavily for it. Hopefully this will sink in! =) That was the only real incident of the day. A few squacks and protest here and there....we're definitely still not back to 'our' Hadley...but we're seeing a light at the end of the tunnel.

In other news...I am VERY excited to announce that Hadley is OFFICIALLY weaning off Keppra. YA HOO! I don't mean this as an insult to anyone whose children or loved ones are on this drug. It can work wonders for people...but like all drugs different people react differently to it and it was just no good for Hadley. We are switching to Trileptal. It is in the same family as Tegretol...but apparently has fewer side effects. It'll take us a month to get her weaned off the Keppra and up to a therapeutic dose of the Trileptal. I am really hopeful that this will be the begining of BIG changes for Hadley neurologically. =) Always HOPE-ing for something! =) Please pray that this transition goes smoothly and that we begin to see changes in Hadley's seizure activity/neurological state and mood/rage problems.

Alright...I need to get to bed...Hadley's likely to be up early...she slept most of the afternoon and evening. Please pray for all of our Brain tumor friends. Our friend Genna and her family are STILL waiting for a proposed treatment plan following a bad scan. Our friend Timmy is now home on hospice. And please remember the parents and families of all our Brain Tumor Angels. I've been a member of the BT support board for long enough now that I'm seeing families who joined around the time I did losing their children and come up on a lot of "firsts" without their children. It is so heartbreaking...and terrifying at the same time. Above all it reminds me that no matter how bumpy the road...we're still on it. We still have our girl to hug on...sing with...and fret over. Our days may often be filled with stress and worry...but we have our Hadley and beautiful smile and her blooming sense of humor to cheer us up. Her goofy brothers are awfully good for our souls too! =)...We are grateful for every day we have with all three of our children. The future is never promised. Cherish your loved ones today! =)

have a great weekend ya'll!!!

The Mama
aka Angela

Thursday, February 9, 2006 10:05am

!!!LOOK!!!...If you love our girl and need a smiley heart melting moment you HAVE to watch this video featuring Princess Hadley. Throughout the video you will see her stop singing, make facial expressions, and talk a little bit...and th en pick back up and start signing again...she even mimics a bird in the middle. If you watch Alladin and the "Aa whole New world" scene you will see that she is acutally acting out the entire scene. She looks like she is looking at something from time to time...we believe that she can actually see that few minutes of the movie in her mind...it really is amazing! Anyway...take a look. Liam and Keegan got in on the action toward the end too! Here's the Link...

Hadley's singing/acting debut







We're at 96,319 hits. If you are lucky number 100,000 please email me and sign the guestbook. We're sending out a framed picture of our Hadley along with a BT awareness rubber wrist band that reads "Sharing HOPE" to the 100,000 visitor to thank you for being such a support to our family!

Well...I always HATE to come here when I have a bad attitude. But this morning...I just can't help myself. I am at my wit's end with our girl. I am frustrated with a portion of the medical care she's getting and I'm just downright frustrated and heartbroken. I'm sick of this tumor and I'm sick of autism...or at least the nasty side of it.

While Hadley's speech seems to be back on the right track and her communication seems to be getting better again...the rest of her life is on a big downward spiral. things are getting out of control fast and I have no idea what to do. Her behavior at school is not only not getting better it is getting much worse. Hitting, pushing, kicking classmates, punching teachers, throwing her lunch (even her favorite foods) and refusing to pick it up, and screaming this horrid screech throughout the day. She is exhibiting some of the same behaviors at home...but for the most part when she's in a foul mood we send her to her room for some alone time. She has good times too...she can be a happy little princess greeting everyone and smiling one minute...then the next...well, look out. It is heartbreaking. Absolutely heartbreaking.

This morning Hadley reverted back in massive ways. I got up with Liam, Keegan and Hadley were still sleeping. So, Liam and I ate breakfast....well Liam went in and woke Hadley while I was still eating. I finished eating and went in to get her clothes and get her morning going. She was standing in the middle of the room with no clothes on...there was feces all over her bed and sheets, her wishing well rug, and the wall and closet. Not to mention all over her and her hands etc. She hasn't done this in years. I was completely beside myself. I wanted to yell, cry and throw something through a window all at once. Not even because of the mess...but because that is such a HUGE step backward for her. This just isn't fair!!! I don’t' know what to do.

I feel so helpless because there is nothing I can do about the tumor...and now this huge regression. What's next? How am I supposed to help her? Who do I even go to next for help?

We've started Hadey on another supplement. Magnesium. It's a long story but our neuro started her on B6 and failed to realize or mention that when you take B6 you have to magnesium along with it. Autistic kids even more so. Apparently Magnesium and B6 is one of the older, simpler autism treatments. But the Magnesium is VERY important when taking B6 because the B6 causes a magnesium deficiency. Symptoms of Magnesium deficiency include Sound sensitivity, Rage/Anger, and bed-wetting. Sound familiar? Yeah. Hadley...Hadley and Hadley. All three of those things have become big problems for her over te last several months. Ugh...I am frustrated...beyond frustrated...but that is another journal entry. =/ So...we started Hadley on a Magnesium supplement last night. We're STILL waiting for a call from our Neuro! Ugh...and this is WITH our Oncologist calling and asking them to take care of this....can you imagine how long it would take otherwise? Ok...complaining session over.

So...my next point is that we really don't see Hadley being placed in an integrated Kindergarten room this fall. We were really hoping that she would gain a lot of ground this school year. Now there are only 3 and a 1/2 months left in the school year. We still don't have orders to Portland so we really can't start trying to set up her schooling there. I'm beyond frustrated with this. I have the paperwork/release forms and have contacted the transition team in Portland but nothing can be done until we KNOW we are going. **rolling eyes** Brandon and I have discussed it and I think we are going to try and find a private school for special needs kids for her Kindergarten year. I just feel like 80f the stress over moving is due to Hadley's schooling and working with the school district to get an appropriate program set up for her. I'm hoping that with a private school we can bypass some of that stress. It will be difficult for us to pay for that but I'm planning on having some income when/if we move and well, that's what savings is for I guess. Hopefully she'll be ready to integrate by 1st grade?!? Please pray for these decisions and that we find a school that is good for Hadley and that it has room for her!!! If anyone out there has any suggestions on private schools with special needs Kindergarten rooms in the Portland, Oregon area please feel free to email me! =)

Now...I have stuff to get done. My car needs my attention in a really bad way. it is GORGEOUS here again. oUr local news this morning said our high is 75 today! WOOT WOOT! We have a lot of junk going on but, at least the sun is shining!!! =) It's already over 60...Holy February Batman. This is so odd. Even the city (San Francisco) is supposed to get over 70 today!!! hmmmm...too weird...but I'm not gonna complain! LOL!!!

Alright...I'm sorry about the post. I know it is less than encouraging. I'm just feeling really down, really robbed, and really inadequate this morning. I needed to get it off my chest. Thanks for listening ya'll!

And for everyone on our Christmas thank you card list and Keegan's birthday thank you list...I'm sorry about the delay ... I realize it's February...I've started them...I'm going to try and get them out by Saturday. =/ Thanks for being patient...I know I'm slow!

With Love and Hope
Angela

Tuesday, February 7, 2006 3pm

It was time for a new song. I was listening to this today and felt liek it should be here. =) Brandon and I played it at our wedding. Actually we walked up the aisle together after the ceremony to it. (Yes, we played bob marley in our church wedding...LOL...and that's just the begining of it...LOL). Anyway...Brandon and I originaly planned on getting married at the courthouse...we wanted to get married right away and didn't want to bother everyone with coming to a wedding and travelign and everything...that and we really didnt' think that anyone could plan a wedding in 12 days...LOL...Grammy proved me wrong on that one!!!...anyway...we chose this as the last song in our wedding. At the tiem we really had NO idea hwo much we would count on the love and support of EVERYONE around us. Our friends, families, church families...and now even 'strangers' (or friends we haven't met yet). We've seen many trials in our (almost)6 years but we've made it through...Hadley has had some pretty rocky times...has been very sick and is here smiling... because there are so many people around us who believe in ONE LOVE. Thank You!!!

PS--Piper's Song is playing in the guestbook if you'd still like to hear it! =)


HAPPY Belated Birthdays to Auntie Manda (Taminda) and Uncle Colin (both of their birthdays were yesterday).

And a Happy Happy Birthday to GRAMMY!!! =)


We're at 95,838 hits on Hadley's page. Please Email me and leave a message in the guestbook if you are lucky # 100,000. I'll send you a Brain Tumor Awareness Rubber Wristband That reads "Sharing HOPE" along with a framed photo of Hadley to thank you for being such a support to out family!



Hi all.

For those of you that missed the latest entry we are NOT password protecting Hadley's site. THe long and short of it is that if anyone wants to misuse Hadley's story and our family's journey and pictures they'd better pack a lunch and bring an army. We're not going to let their actions rule our lives. There are too many people who truly care and have good intentions. =)

Now...First Hadley's scan has been scheduled for March 7th. I called and asked that it be scheduled now so that we could get her appts closer together and we could get out of there sooner. Well, good thought...BUT...we have to do a looooonnnnggggg MRI this time. Of the brain and spine and all of the perfusion/difusion and gradient echo studies too. This is all for the study that we're watiing to re-open. So, apparently Hadley is expected to b e in the scanner from 10am until 2pm??? Four hours seems a bit long...even for all of those studies and scans...but..I suppose they know a lot better than I do how long they take! =) So, it'll be another full day at UCSF. Drat! =)

We're having a reallly hard time with Hadley lately. She seems to be feeling Ok...but she is being quite a bully. She is hitting other kids and even her teachers at school. She is doing this at home as well...just not quite as much. We aren't really finding any solutions. It broke my heart this morning watching her punch her favorite teacher in the stomach (repeatedly). I know that my child isnt' perfect...she can be just as big a pill, if not bigger, as the next kid...but that really isn't her. It's been going on for a while now and it bothers me that we haven't been able to help her stop it. What do I do? This is really eating at me.

We're waiting for a call from our Neurologist...we're still having problems with break through seizures. I would really like to switch meds completely. I want to take her off the Keppra and see how her "rage" problem is affected. My mommy gut is telling me that it's where our problem is. I brought this up at her last neurology appointment and well, frankly, they don't know her very well at all and it was kind of just brushed off. I mean what do they care if she's hitting kids at school and bringing her brothers to tears every 10 minutes? As long as she's not seizing while she's doing it. Ugh. =/ So...I plan to put my foot down (famous last words, right) and propse that as a plan. We'll see what comes of that...or if the call ever even comes. LOL!

Well, I have errands to run...It's gorgeous outside. I don't know how hot it is but it feels like low 70's. It's only Februaury...woo hoo! =)

Thanks for checking in on us!
WIth Love and HOPE
Angela

Monday, February 6, 2006 10:45am

Hi...I wrote a whole post about deciding against password protecting Hadley's site. I'm not sure where it went. LOL...

Basically...I've decided that it would be VERY inconvenient and a VERY false sense of security. Lots of work little safety. Anyway...I did have a uote in there from Lemony Snicket's: Series of Unfontunate Events that I would still like to share:



At times the world can seem an unfriendly and sinister place but, believe us when we say there is much more good in it than bad. All you have to do is look hard enough. And...what may seem to be a series of unfortunate events may, in fact, be the first steps of a journey...



There are a lot of unfriendly and sinister people in this world. But this is a journey we have shared since day 1. It seems a shame to seclude ourselves from the good because the bad exists.

Thank You for supporting us and praying for us.

Always remember to look for the good in the world.

WIth Love and HOPE
Angela and family










Hi There,

This is a hard post for me to write. Hadley is fine, don’t worry. =) I am the type of person who likes to believe that people are mostly good. I trust people to be who they say they are. Unfortunately...this isn’t always the case. On more than one occasion now we’ve had “frauds” come to Hadley’s site either through web surfing or even after finding our addy on support boards etc. While these frauds don’t seem to pose an immediate physical threat to Hadley and our family, there is plenty they can do by ‘stealing’ photos and my journal entries. These frauds prey on those who are caring and generous...and even in this latest instance those who are hurting and have sick children themselves. For Hadley’s and our family’s safety and to try and prevent further fraud we are taking measures to ‘protect’ Hadley’s site. Until we can get these features up and running Hadley’s Site will be password protected. All you have to do is email me at: HadleysMama@yahoo.com and I will give it to you (provided that we ‘know’ you etc). This way I will at least have a list of who has access to our family information and pictures. I wanted to post an explanation...and make sure you have our email addy...Before I set the password. This evening we will be turning it on though. I’m sorry that we have to do this. But, honestly...I am just way too creeped out to not do it. =(

Thanks for checking in on us. I’ll update again later.
Angela

Saturday, February 4, 2006 1:15pm PST

Hi There.

Well, Hadley finally got some sleep last night. Thank Goodness. She was so tired...and it was really starting to show. She went to sleep yesterday when she got home form school. She went down at 3:30 and didn't wake up until 8:40 this am. Yeah...I guess it was more of a hibernation. LOL...

I talked to our Neuro oncologist yesterday. She said that if we continue to have problems with migraines to add a dose of migraine meds every day. So she'll have 2 doses instead of one. THe problem is that the medication can be quite sedating. Which takes me to our next issue. She said that we should try giving the migraine med in the morning instead of the evening. She said that there's a small chance that it could be having a reverse effect and be keepping her up at night instead of having it's usual sedating effect. She didnt have it last night and she slept beautifully. We gave her the med this morning and so far she seems ok. A little slow...but if I had slept for that long I think I'd be working to get back up to speed too. =) We'll see howo she does tomorrow.

We were supposed to go Turlock today but Liam was runnning a low grade fever last night (it's gone today...and I think it mnay actually be his 2 year molars coming in) and Hadley has a bit of a 'snot rocket' problem...lol. We were supposed to go out to a party but they are apparently feeling under the weather too. Tis the season. =/ So, it looks like we'll be staying home. We may go out tomorrow...but, we just have to see how everyone is feeling. We kind of need a slow weekend to rest anyway. =)

I was looking back at old pictures last night. I found pics from Christmas of '04 and last spring. I am blown away by how much the kids have changed in one year. It always amazes me. Liam was still such a baby...a chubby little baby with so much hair he looked like he was wearing a toupee. Keegan was still a chubby faced little boy...in love with his guitar. He still looked very much like a toddler. Hadley...wow...Hadley. I love my girl...I always think she's beautiful. But, she looked awful. She didnt' have any color in her face...she was very gray and pale...any color she did havev was a slight touch of jaundiced yellow. Her hair was falling out quickly. Her body was broken...she was exhausted. Her sparkle was gone.

The kids have changed so mch. Keegan is 4. He is such a boy now. Star Wars, superman and dinosaurs have taken over his room. Liam is two...he's our little monkey. Not jsut walking now...but running, climbing, and falling off everything. He's talking up a storm, in complete sentences even. He's bottle free =). Hadley...well, she's still gorgeous. She's tired, her tumor is still there trying to take over. But her sparkle is there. There are good days and bad. New challenges, different heartbreaks, a new set of goals regarding her care and prognosis. She is so obeautiful. No matter what our next treatment decision is I'm thankful for the break we've been able to giver her body. She needed it.

I am so lucky to have such great kids. They go through so much. I am so proud of how they handle it. i don't know how I get throught the day sometimes...I can't imagine being a child and going through this. Not understanding what was going on or the feelings I was having.

Theyhandle this so much better than I do. My kids are so trong...so amazing. I am so proud.

My husband. I am so thankful for him. We have gone through so much. Even before the tumor we worked through a lot of crazy odds and won. Then Hadley's autism diganosis...then the tumor diagnosis...and all that mess. Brandon is always the rock. When I'm an emotional mess he is strong and stable. I don't understand him very often...it baffles and even frustrates me at times. But he is always there to support me the best way he knows how. Wether it's giving me space...looking the other way when I blow money in "retail therapy', listening to me rant and rave, or holding me when I cry. He is always there. He loves me more than I deserve and puts up with a lot of grief from me. I overlook and forget to acknowledge that a lot. Thank you babe for loving your crazy wife!

I am a lucky girl...I have a great family. God has to be looking out for me. I love them so much!

Just thought I'd share. I know I 'whine' a lot. This is a frustrating journey. It is full of such amazing a 'raw' love though. You just really can't explain it. =) thanks for checking in on us. I'll try and get new pics up later. I have bedrooms to clean and sheets to wash. =)

With love and HOPE
Angela

Wednesday, February 1, 2006 9:25pm

Hi Hadley Fans....

Hadley is doing well. She's had a bit of a mean streak lately. She's been really testing her teachers at school with unprovoked angry outbursts at school. Most of these outbursts reesult in Hadley hitting, pushing, or kicking one of her friends. We've been working on it and she seems to be calming down a bit. No more migraine issues since Friday night. Still haven't heard back from our Doctor about increasing her migraine medication. We are also wiating on our doctor to call the Neurology clinic so we can get in to see them sooner than April too. We need to adjust seizure meds and try to work out some of these break through seizures. Apparentlyit's quite an undertaking to get in earlier than your scheduled appt though. Ugh. Hadley is starting to have some sleeping issues again. We haven't seen these for awhile....she's been so exhausted whiel on chemo that she just slept all the time...now she seems exhausted but is having problems sleeping. I can't help butthink htis is related to her temper issues. Anyway, we're going to talk to our doctors about this too. We need to see what we can do to make sure she is getting enough sleep. =) Other than those 'small things' everything is good. Just counting down to our next scan. I am a llittle nervous...but somewhere deep in my heart I feel like it is going to be good. =) A very guarded place...but the feeling is there. =)

We found out that we probably won't get any more information on our move until at least mid to late March. Blast. So, if we're lucky we'll have about 2 months to plan and carry out this move. It's gonna be a LOT of work. There is so much that will have to be done just to move Hadley and her care and schooling. Then there's the rest of us. And we won't know until then where Brandon will be stationed. It could be a ship or it could bea station, or it could be a small boat out of Portland...oy. =) This is our life though...I am SLOWLY learning to embrace, or at least accept, it. =)

Our friends Morgan and Braeden have been coming over to play while their mommy is at work 3 days a week. The kids have a blast driving eachother nuts...=). No, they get along really well for 5 kids aged 5 and under! They're all pretty amazing kids. Anyway, here are a few pics from last week. =)

Mama's favorite chair. =) The kids all love to pile up on it to watch a movie on rainy days. =) This chair was Honey's (my great grandmother) I think she would be pleased to see another generation of kids piled in and having fun on it! =) Here's a shot of Braeden, keegan, Morgan and Liam...they're all looking out the back door longingly...a rainy day with a room full of 'California' kids...oy...lol!!!

Here's one of Liam and Morgna lounging around like a little old married couple...


Morgan and Hadley...Eye contact...no thanks...it's seriously over rated...=)



Okay fine...ONE picture...

Braeden and Keegan having a snack...

And another one of our very silly Braeden and Keegan during snack time.



Thanks For Checkin' in on us!!!

Brandon and I had planned on going to the Coast Guard Ball in March. It's the weekend after our anniversary so we were going to spend the weekend in the city to celebrate. Anyway...we decided to skip the ball and go to Vegas. yes, we're going to "Sin City". Brandon's never been and I haven't been since before I was 21. We decided that we really need a weekend away just the 2 of us. We're gonna go let our hair down for a weekend...well neither of us really have enogh hair to really 'let it down' but...ya'know. =)

Please continue to pray for our PBT friends. Caden is home on hospice and is declining. Genna just got some bad MRI news and is waiting for her team to come up with a treatment plan. Brianna is one of our little ones she's been having some seizure like issues. Our friend Devin is embarking on a new journey with brain damage caused by chemotherapy. Please pray for all of these kids...please pray for all of the parents who are missing their Angels. Just keep on praying ya'll.


With Love and Hope
Angela

Monday, January 30, 2006 4:25 pm

The last video of Liam wasn't working correctly...here's a great one of napoleon er...Liam...LOL...
Monday, January 30, 2006






I took these pics last week and forgot to share them with all of you...so here you have it...A day in the life of Hadley...excuse me...an MRI day in the life of Hadley...=)



In the car...To get to UCSF we have to go over a BIG bridge called "The Bay Bridge"...when it's just me and mommy we have to stop and wait in line to stop and give the person in the booth $3 for the toll. When Daddy's with us we get to use the carpool lane...Mama LOVES sitting in traffic...=) We usually leave at about 7:45 am


Here we are in one of the waiting rooms for the MRI scanner. There's a big waiting room with a fish tank...then...we go back to one of these waiting rooms to wait for the doctor to talk to mommy and "Take a listen heart" to make sure I'm healthy enough to have anesthesia. This room has toys and a TV for cartoons etc. This day we wre watching Berenstain Bears on PBS. Mom does this 'daughter" (rubberband/barette) have metal in it???

The parking garage in the waiting room is one of my favorite toys...there are never any cars for it...but, I like it anyway. =)

When it's time for my MRI I go back and see my dr/nursse friends. I sit in mama's lap and sometimes I even get to hold my own mask. The mask has a ucky smell in it...but my nurses always pick a yummy smell to put in it for me. This time it was bubble gum. After I'm nice and sleepy the doctor and nurse hold me up while mama slips out from under me....then they lay me down on the special MRI gurney. By this time I'm fast asleep but mama always kissess my head and tells me she loves me anyway...=) After I'm asleep my nurses put in a few IV's for fluids, the dye for the MRI, and Medicine to keep me slepey through the whole scan. They wait until I'm asleep so that I don't cr when they are poking me...they're cool like that...Im tough though...I usualy don't cry anynmore. =)

On my last MRI day daddy got to come...while I was in the MRI scanner...this one took a LONG time (about 2 hours)...Daddy donated blood at the UCSF blood bank. Daddy is O ...so he donates a lot of blood! Thank you Daddy!!! Mama's a goof ball and got a tatoo so she can't donate for a year now! She's usually too anemic anyway.

It usualy takes me about an hour wake up from anesthesai...they always call me sleeping beauty...b/c I take so long. I'm always pretty grumpy and wobbly when I wake up...so I ride in my stroller. We usually go and eat luch in the UCSF food court while we wait to see Dr Banerjee.

After we eat we go back to the clinic and wait for our appt with my Neuro Oncologist.

There is a big waiting room with lots of windows...there's a really pretty view of San Francisco from the Hem/Onc clinic. There has to be some kind of a perk right?!? There is also a really cool plasma TV with a fish game. you touch the fish on a little TV and htey do silly things on the big TV...mama forgot to take a picture. =/ Then we go back to one of the exam rooms to wait for the doctor. On the way I stand on the scale. This time I weighed 51 lbs...and get measured...this time I was 3' 8"...=). I also have my blood pressure and temperature taken. I usualy get to pick out a toy to play with in the exam room b/c awesome dotors like Doctor B have a lot of kids that need them and sometimes it takes a long time for her to come. =) This time I chose the bead 'coaster'...=)

Here I am in my stroller ready to hit the road...hopefully the traffic won't be bad. We got here at 9am...and this picture was taken at almost 4pm...it's been a LONG day...but it was worth it. Doctor Banerjee says my tumor is stable! YAY!!!

Keegan gives the camera a thumbs up...we went out to Applebee's to celebrate. Mama wanted Chili's but she said we were SO not going to sit in traffic again...she's fuuuunnnnyyyy. =)

Nothing tastes better than a celebratory sundae...good thing I don't have nausea issues after anesthesia...=)

Mama loves watching me enjoy ice cream...=) She says I'm a piglet....

Liam enjoying his celebration sundae

Nice, Liam...

Keegan chose a milkshake...



and in antoher 5 weeks we'll do it all again! =) Start praying now for great reulsts!!!

Saturday 10:30 pm

Just wanted to share a cutie little vide of Liam...he insisted on doing homework with grammy during her last visit...=) Too sweet...



Hi all...Hadley had an OK day. No more vomitting. she was clearly tired. Dark circles under her eyes...but, eaating fine etc. Having to give her migraine meds this am didn't help...it really conks her out. Anyway, she slept a good portion of the day...woke up at about 8:30 took her night time meds asked for pediasure and to go back to bed. Let's hope that she's back to herself tomorrow. =)

We have new neighbors...oy...apparently the Coast Guard decided that it would save them money to move single housing into family housing. So now all the young single guys and gals are all mixed in with the families. Anyway...its 10:35 and I've been listening to our neighbors music for about the last hour and a half now. Our houses aren't attached or anything...they're just in the mood toshare their 'celebration'. =/ It toatly sounds like I'm whining here...and I am...but I do sort of feel bad for them. They all went from barracks filled with all young singles etc...they could party when they wanted without irritating the desperate housewives (LOL) and listening to them rant about not waking up their sleeping children. =) Anyway...let's just hope that these new guys next door and the guys a few doors down's ships are never in port at the same time...LOL! I may actaully lose my mind. =)

We have a friend's birthday party to attend tomorrow. It should be fun! Lucas goes to school with hadley...he's such a sweet boy. His mama is wonderful. I don't get to spend nearly enough time with her. It should be a good time..a.nd I'm looking forward to it. Happy, Happy Birthday Lucas!!! =) (Crystal/Dr S's ofice, yes, this is YOUR Lucas...LOL)...=)

Well, I'd better go to bed (and listen to our neighbors blasting stereo some more...can you name that tune in 4 notes...LOL) OY...maybe I could just burn them a disc and ask them to at least play music I enjoy too. *rolling eyes* =) This would explain why Keegan wound up in our bed last night...he always get woken up b.c his room is on the drivewa side of the house so when everyone comes home when the bars close etc he gets headlights int he window and loud sailors with too many drinks in em outside his room. =/ It'll be nice to not live in military housing when we move to Oregon! hee hee...

g'night all...

Angela

Friday 10:20 pm

Saturday 10:45am

Hadley is up and about...no other apparent symptoms. No more vomit. Pretty tired...other than that OK. She is hungry and eating etc. In the last 20 mins or so she's been holding the back of her head and saying "does that hurt Mommy? Does it hurt? Is it owies?..." I hate the constant worry. Had we not just had a scan I would be taking her in for a CT. Because I worry so much about Hadley's communication and missing somethign because she can't tell us how she's feeling. Anyway...we just had an MRI not even a week ago...And Brandon has duty today AGAIN (meaning that he is at work and can;t leave the island until tommor around 9:30am. This schedule is getting old. When he transffered to this job one of the big perks was NO overnight duty. Now he's having several duty days a week. There's a frustrating sittuation behind it that I won't get into...this isn't the place. I don't think that his chain of command understands what is going on in our family right now. Another day...another post...another place...

Please keep our girl in your prayers.

Please keep our friend Chelsea and her daughters Marlee and Caden in your prayers. Caden is 2 and has a brain tumor. She was recently put on hospice after her tumor spread very quickly in the middle of radiation and chemo. Last night Chelsea lost her grandmother (the girl's great grandmother). They think it was a heart attack. How much more can they take? Please keep them in your prayers!!!

Keep all of our BT kids in your prayers...none of this is fair...

Please continue to thank God for Hadley's miracle...our next scan is in 5 weeks. Please also be praying for that. We really need this miracle to continue!!! =)

With love and hope
Angela




OY...Houston, we have a problem. VOMIT!!! It's baaaaaaack. =/

Hadley started vomitting around 9:15 tonight...She waited around 20 mins then started up again. We coldn't get her to keep her meds down. =/

my poor baby...this makes me so sad...just a slap in the face...even when things are 'good' there's still so much 'wrong' trying to bring our baby girl down.

I don't mean to sound ungrateful...I'm deffinitely not. This journey is so hard...so hard watching your child suffer...

Please pray for our girl...!!!

Angela

Wednesday, January 25, 2006 8pm...The day after Hadley's GREAT scan!!!

Hi all...=)

I've pretty much just been grinning all day...and telling everyone I see about our awesome news! It's SOOOOOO nice to FINALLY be able to share some possitive news. Honestly when Doctor B told us that the tumor was stable I didn't believe her...then I just sat there...I didn't know how to react. Then I just about cried...then I did...=)..a few times. To say that my faith in the power of prayer has been renewed is an understatement. There really is no good explanation for this to happen...our doc seemed a little more baffled (but a LOT happier) than usual. THANK YOU for all the prayers!!!

Our plan from here is to do another MRI in 6 weeks. Hadley is still on the waiting list for the Lapatinib trial. Apparently we're waiting right now because the study was closed while they try and have the max dose elevated. They've reached the max adult dose on the study with the majority of the kids not having intollerable adverse effects...so now they're working to have a higher dose approved for the trial. If/When this opens again Hadley will be on this higher dose. It is an oral dug taken twice a day. Unlike the other trial we can crush the pills and mix them in compounding syrup or juice for her. The most common side effects are diarreah...sometimes this gets bad enough that the chemo has to be 'held'...a dry skin rash, genereal fatigue and weakness...nausea and vomitting are also fairly common. For the first month we have to go into the clinic every week for a check up. Also weekly blood draws for the first month. From there on out the clinic visits go down to once a month and the blood draws to every other week (or twice a month). There are a lot of extra tests...urine tests, Echocardiograms, PET scans and Pharmacokinetic testing that requires being at the hospital all day on the last day of each cycle. We give Hadley a dose of chemo and then draw blood at set intervals to see how she metabolizes the drug. This seems like it may be a lot of work and there are a lot of risks. But, it's just another step along our journey. Another step that we will need your support in prayer through.

Thank you again...so much...for all the prayers!!! Hadley has touched so many hearts...I'm so glad that this week she has touched everyone with good news and not bad!!!

Please pray for all of our PBT friends...there are a LOT of kids who have gotten bad news in the last week. Please pray for these kids and families. This journey is so hard...but I can't imagine what it is like to know that it is coming to an end and that you are about to lose your child. So, while you are thanking God for Hadley's miracle please pray for these families as well!

With Love and a renewed sense of HOPE
The Mama

Tuesday, January 24, 2006 4:45pm

Hi all...we're home...Miracles do still happen...=)

Hadley's tumor is STABLE...yes, you read that right...but you can go back and read it again if you want to...I'll wait...*tapping fingers*...ok...so...yes, no chemo or other treatment and the blasted thing is STABLE. No growth no noticeable increased enhancement...nothing...just a flat out stable tumor!!! Miracles happen and Hadley got one today!!! THANK YOU for all the prayers, meditation, and general well wishes!!!

We're off to celebrate! That's one point for team Hadley...heck...make that 100 points...lol...

The Very Thankful, Very Happy, Very Amazed Fox Crew =)

Monday, January 23, 2006 MRI Eve

Hi all...I meant to updat earlier...adn the day just got away from me. It's MRI eve and Hadley had another bad day. It wasn't quite as bad as yesterday. She was tired this morning even though she woke up on her own. I decided to go ahead and let her go to school. I trust her teachers completely and we live, litteraly, a minute and a half from the school. We can see it from our front porch. Anyway...she startd asking to come home and go to bed at 10:15. At 11:30 Hadley's teacher called and said that she was really dragging and still asking to go to bed. So, I went and picked her up from school. When I got there one of hr poor aides was sitting at a table with her. She had these ring things that are sort of a puzzle thrown all over the floor...and she had her head laying down on the table. I said "Hadley are you being a turkey?" She sat up...she'd been upset...and said "hi mommy, I want go to bed now." She came home and sast with grammy on th couch for a while...then i put her to bed it took her a while to go to sleep...but she finally did around 3 ish and is still asleep (7pm). **Sigh** I'm jsut trying to not think about it and waot and see what the MRI shows tomorrow. It's a matter of hours now...certainly I can go this last little bit without freaeking out. =)

In other news we need some prayers for one of Keegan's classmates, our family, and the other families at his school. Apparently one of the kids was taken to the ER and was admitted on saturday for Pneumonia, RSV and Bronchitis. Last we heard this child wasn't doing well. We don't know who it is b/c of privacy laws but please pray for this child and his/her family. Pray for our family and the rest of the families that none of the rest of the kids catch this crud. Especially for the families with newborn or immunocompromised sibllings. Yuck! I hate nasty winter germs.

I'll update when we get home tomorrow...

with love and HOPE
Angela

And because we all need a little laughter in our lives...no offense to ANY airport employees of any kind...LOL...
The Airport Song
Just look in the left hand column and click on "airport song"...
David M Bailey...the artist...is a brain tumor survivor!!!


And a happy early birthday to Auntie 'Nise...just in case I forget tomorrow. =) We love you!!!

Saturday, January 21, 2006 6pm

Sunday night:

Hi all..I didn't want to take down Keegan's birthday pics yet...but wanted to ask for prayers and thoughts...Firstly...three, yes THREE, kids on my PBT board were put on hospice this weekend. Please pray for these families. Caden, Josh and Ryan and their families need to be surrounded in prayers and love right now!!!

Now for the 'lighter' news. Hadley had an all around bad day today. Her worst in a while. She didn't have any vomitting spells...but she was just so 'out of it' all day. She was clumsy all day from the minute she got up...she seemed dizzy off and on all day...lots of seizures...and very tired all day. She wasn't even that active...we went to Toys R Us but she rode in her stroller and we didn't hear a peep out of her the whole time we were there. Not a peep. By the time we got home sh couldn't support her own weight standing up. She couldn't walk...thn she could finally stand but, couldn't take a step without falling. It just baffles me...one day we're having to follow her around and tell her to slow down becaus she's going to fall andthe next she can hardly support her own weight. I assume tomorrow she'll be off and running again. I'm glad for that (hopefully this will be the case) but it's so heartbreaking watching your child decline this way. When I think about how active she used to be. Bouncing off the walls she wore me out just following her around everywhere making sure she wasn't gtting into trouble. Now she can't tolerate a trip to Toys R Us in heer stroller. What a diffrence 2 year makes...=/

I always worry before scans...but she just had a horrible day today...it has me very concerned about what we will see on the scan on Tuesday.

I know that most of you have been praying for this scan for some time now...I just wanted to make sure and ask...just in case...and to just kind of vent my feelings, fears and frustrations...

I posted on my PBT board last night, and I think it sums it up pretty well...I feel like we're standing on the edge of a cliff...just far back enough that we (and nobody around us) can see over the edge. We know we're about to drop...we just dont' know if the drop is 1 foot or 1,000 . It's terrifying. Terrifying doesn't really even touch on it. I don't think there are words for these felings. While this time is one of the hardest of my life...I do still have a sense of peace. I know that we are/have been doing all we can for Hadley medicaly. We've done our best to make her life Happy and loving. She, however...has given us more than we will ever be able to give her. She has had so many people from around the world praying for her. What happens is out of our control...what will be is God's will. If I'm not already ok with that I need to GET ok with that. I'm ok...I promise. i know that this probably sounds odd to most of you...but I'm ok. =) I really am. I sure wish that things were different but they're not. We don't know how long Hadley will be with us...could be 7 years could be 70. Regardless, she has been one of the greatest blessings in my life!

Thanks for checking in on us...

With Love and HOPE,
Angela



Hi all...today was Keegan's Birthday Party. I think he had a blast. I love it that he is still young enough that he is easily impressed. =) Ha ha...Anyway, I need to say thank you to everyone who came and helped Keegan feel special on his big day. Thank you to the Keane's, Elizabth and Joseph Mayer, Grammy, Uncle Ron Irene and Kylie, and Grammy Jerry. He had a great day. Thank You for helping us celebrate!!! Here are some pictures...


And because I am just pretty stinkin proud of the cake I made for him here's a pic of that...It's an X wing Star Wars ship...=)

Friday, January 20, 2006 Noon

Hello all...Hadley is doing ok. As always she's in amazing spirits. I honestly do feel that it's a blessing that she doesn't understand what is happening to her. Anyway..she seems to continue to get more and more tired. She wears out faster, is MUCH clumsier, and her speech continues to regress. This all has me VERY worried for her MRI on Tuesday. Not that I really need a reason...I always worry about MRI's...it seems the ones that we know to expect growth are a litlte harder though.. especially knowing that we have run out of conventional treatment options.

Anyway...today when I dropped Hadley off at school I kind of new that 'something' was going to happen. She has a little bit a boogery nose and her body just doesn't seem to be able to keep itself going correctly and fight that cold...she winds up having a lot of seizures and being very worn out. Anyhow she was very wobbly when I dropped her off at school today. She was walking really weird like she realized she was wobbly and was trying to compensate for it. I just knew she was going to get hurt...and she did...it's not bad, it could have been much, much worse. It's just sad to see your little princess with a decent case of road rash...especially knowing WHY...and knowing that it IS going to get worse. Here are some pictures. Please be thinking of our little princess...she just doesn't deserve any of this.






Thanks for checking in on us!!!
With Love and HOPE,
Angela

Wednesday, January 18, 2006 HAPPY 4th BIRTHDAY KEEGAN!!

Four Years ago this evening Keegan James became an official member of our family. We went in for an OB visit at about 5 pm (it was a Friday in '02). We had planned on inducing labor if Keegan hadn't been born by the following Monday becaue Daddy's ship was getting underway a few days later. We went in to see if/howthings were progressign and if the doctors thought Keegan was ready for induction. The doctor told me that I was dialting etc and that she would see me on Monday if she didn't see us before then. We left and stopped at Mc Donald's for dinner...stopped to pick up Hadley at a friend's house and got home around 6 or 6:30. I chuckled as I said "I suppose I should pack a hospital bag and make sure we have film in the camera now." Almost as soon as that left my mouth I started contracting. I got to the top of the stairs and couldn't believe that I'd already had 2 in a short period of time. I wobbled upstairs (3 flights, mind you) and threw some stuff in a bag...we stopped back at our firend's house and dropped Hadley back off...ha ha...and headed to the hospital. We got there around 7:30...got checked in etc...at my first exam I was already dialted to about a 7. We walked around the hospital a few times...went back got checked again and I was at about 8...Keegan was born at 10:59pm. It was seriously almost completely effortless. He was gorgeous...I was so in love. He weighed 8lbs 7ozs and was 20" long. He was perfectly healthy...and despite questioning looks from friends, strangers etc I was perfectly happy. Hadley was 16 mos old. Keegan was a newborn...I was EXHUSTED...but so happy. =)

It has been a blessing to watch Keegan grow and develop...it's a miracle I will never take for granted. I even feel blessed by, althoguh frustrated with, his latese challenging phase. He is really trying to prove his 'big boy-edness"...unfortunately he equates being a big boy with having an attitude...but, you know...it's typical...it's typical 4 year old behavior! I get frustrated...but I always remember what a miracle his development is. He is an amazing child...I see big things in his future! =)

Here are a few pictures from this week...you can click on them to see the full version...





We are also having his Star Wars party this weekend...rumor has it there is an X-Wing cake in the works...=) We'll see hwo it goes...LOL. I'm sure I'll share pics Saturday night!

Thank you for checking in on us and for helping us wish our Keegan a Happy Birthday!

With Love and HOPE
Angela

Tuesday, January 17, 2006 9:20 am

Here is Hadley's VERY FIRST school picture...a SCHOOL PICTURE...can you believe it? What a sweetie...and look at how chubby she looks!!! Of course that was before all the terrible vommitting episodes...but...ya know...Here it is:




Annnndddd...because I've had so many people ask here is a shot of my 'new' hair. I took the pic myself so it's an odd angle. I'll just stop pickinng myself apart...but, I don't know when on earth my nose got so huge...LOL!



Alright...so there it is...I think that's all the photos for the evening...I have a family shot from the Luau (all 11 of us) but our scanner doesn't want to work. I hope to talk some sense into it by tomorrow. I want to post some baby pics of Keegan for his birthday post. =) G'night...=)


Here are the photos I promised...There is one of Hadley sitting att he table with a PB sandwich. Her eyes are quite deviated. She was pretty tired...but we haven't seen her eyes like this in quite a while. =/

Anyway...you can click o n the photos to see the bigger version of them (they'll open in a new window)! I also posted Hawaii pics above the journal...ENJOY!!!






Hello Hadley Fans...

Our weekend was fun. Keegan felt like a prince...totaly the center of attention for his birthday celebration there. A big thank you is due. It's not very often that he is the center of attention like that. He ate it up!!!

Hadley is home from school today...she and Keegan have boogey noses and sneezes etc. She feels a little warm too..not quite feverish...just a little on the warm side. I'll take her temp as soon as I'm done here. PLEASE pray that Liam does not get this. Every single cold he gets goes straight to his chest/lungs. Our Ped said the next time he gets weezey or croupy he is going on daily sthma meds...Ugh...While that's not a big deal in the grand scheme of things I'd rather wait until he's as old as possible...don't ask me why...I'd just rather not start him any earlier than we have to?!?...

Keegan's birthday party is on Saturday. His girlfriend isn't going to be able to come. =/ Her great grandfather is sick and her fmily decided to g see him and show off sweet baby Caleb at the same time. Hopefull the rest of Keegan's invitees will be able to make it. THis whole not inviting the whole world thing keeps backfiring in my face. I told Keegan he could pick a few friends to invite...he chose his 6 closest friends and so far it looks like only 2 will be here...same sittuation as Liam's party! UGH...but you know if he invited 20 kids they'd ALL be here. What am I supposed to do??? I feel so guilty that this is his first birthday that he actually haas freinds from school and stuff and now none of them will be here. What's a mom to do?

OK, I'm off to ponder the birthday party sittuation...and try and get this wreck of a house under control. I'll post some pics from the weekend a bit later. =)

Thanks for checking in on us.

Oh, one more thing...If you have any used ink jet cartridges...from your printers...a friend of ours in Washington is collecting them to raise money for Brain Tumor research. He turns them in and gets $5 for each cartridge donated to BT research!!! You can find the address tosend them to and the rest of the info here: Dave Meyer's Site . Dave 'lost' his battle on earth with a brain tumor about 4 months ago. He and his wife have 3 children and Kenny is doing this for his HS project. What a great kid huh?!? Anyway...please check it out and help him out if you can. You'll be helping him AND all of us affected by BT's! =)

Here is the info from Chelle (Dave's AWESOME wife and Kenny's mom):

TEAM MEYER ALERT!!!
PLEASE REMEMBER TO SAVE YOUR INK CARTRIDGES FOR KENNY. THEY CAN BE FROM PRINTERS, COPIERS, FAX MACHINES, ANYTHING! SEND TO KENNY AT:


1348 LOWELL DRIVE
WALLA WALLA, WA 98362


WE WILL REIMBURSE YOU FOR SHIPPING. ALL PROCEEDS OF THE CARTRIDGE DRIVE WILL BE GIVEN TO RECYCLE FOR THE CURE! 100 PERCENT OF THE PROCEEDS GO TO FUND BRAIN TUMOR RESEARCH. THIS IS KENNY'S "BLUEPRINT FOR TOMORROW" PROJECT. SEE Al Musella Foundation FOR MORE INFORMATION


Alright...I'll check back in later!

Friday, January 13, 2006 8:45pm

Hi all...

I feel a little better today. Hadley had a decent day. Daddy picked her upfrom school so I didn't get to talk to her teachers...but, she did take a nap right after school. And is now back in bed...=/

I spoke to UCSF today...Doc banerjee said that we will be doing the MRI regardless of what is happening with the trial wait list. So we will for sure be scanning on the 24th.

Keegan's birthday is this week. He'll be 4 on january 18th. He's chosen to have a Star Wars party at home. We're keeping it pretty small. He's old enough now to choose friends from school to invite. He's such a big boy. It is bitter sweet. I relly love each stage he's gone through. He's really exploring his independence these days...but is in the awkward stage where he WANTS to do it all himself but still needs me there to help and for reassurance. SO it's a nice game of 'go away mom'...'Mom, I need you" all day. Ha ha!!! I can't believe he's 4. He won't be starting Kinder until he's over 5 1/2 and I really don't have any problem with that. =) I realized today that if Hadley starts Kindergarten in the fall...and Keegan starts Kindergarten in Fall of '07...and Liam will be old enough to start Kindergarten in Fall of '08. Whew...whatever school we'll be at during that stretch of time...well...they have their work cut out for them. =) Of course I don'tknow what'll be 'worse' having three fox kids in the same school at a time...having a fox kid three years in a row, or having ME as a MOM for three students that close together. LOL!!! =) Hi...I'm Angela...I have a Kindergartner a 1st Grader and 2nd grader and I'm slowly losing my mind...LOL. I'm sure if I can handle 'life' now I can do THAT. =) I am woman hear me roar! At least none of them will be in diapers anymore by then...well, knock on wood!


We're going up to Sacramento this weekend to celebrarte family birthdays at Papa's house. It should be fun. =) We'll be back on monday (brandon has the day off). We need to ge Keegan's birthday shopping done too. And we have a birthday parry to go to on Monday as well. It'll be a busy weekend. =) Busy is good!

I went and got my hair cut and colored today. The verdict is still out on that. When I walked in the door Brandon just looked kind of stunned...=) Ha ha...but, not really so much in a good way. =) If I get brave enough I'll post pics of it...=) If nothing else I now feel like I was totaly in control of something today...even if it was as insignifcant as my hair. LOL!

I'll update at the end of the weekend
Angela

Friday, January 13, 2006 11:15pm

Hadley went to school today. She had a pretty good day. Her teachers said she was pretty tired again today. I kept her up though...I didn't want her napping and then not be able to sleep tonight...She went to bed at about 7:30 though.

I asked her teachers if they'd noticed anything weird going on with her speech. And they both said that they had noticed some regression starting back before Xmas break. Miss Christina had actually noted it in Hadley's notebook today...so it is kind of weird that I decided to ask today. Anyway...we all have noticed that she is reverting back to her "jiberish" a lot. Also she is 'forgetting' words and phrases midway through. She'll start to say something and then just stop and kind of look confused. This is especially odd because Hadley's speech is so memorized and methodical. She still doesn't have much int he way of spontaneous speech. She still uses all memorized phrases...even the pitch and tone are the same EVERY time she uses them. So it is odd that she would forget them. I feel so bad for her. She'll try and initiate a conversation with you and then her words will just get lost and all of a sudden she's speaking jibberish. It scares me. Before her first surgery Hadley spoke mostly in jibberish. Then her vocabulary really grew after surgery and over the last two years her communication skills have just taken off. She is still VERY delayed but, she has been growing. Anyway...now she seems to be regressing again. Blasted tumor...I just hate it!!!

I'm trying really hard to stay upbeat...but, this all really seems to be "settling in". I was doing some research tonight. I'm still trying to make decisions about the clinical trial we're on the wait list for. Anyway...I've known since early on what the differences between the different phases of clinical trials are...but never really reallized how SMALL the group of people enrolled in a phase 1 trial are.






Explanation of Study Phases

Most clinical trials are designated as phase I, II, or III, based on the type of questions that study is seeking to answer:

In Phase I clinical trials, researchers test a new drug or treatment in a small group of people (20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.

In Phase II clinical trials, the study drug or treatment is given to a larger group of people (100-300) to see if it is effective and to further evaluate its safety.

In Phase III studies, the study drug or treatment is given to large groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.


These phases are defined by the Food and Drug Administration in the Code of Federal Regulations





Anyway...I don't know why some things are more of a blow to the gut than others...but, for some reason that is really hard for me. 20-80 kids in the country...and they want Hadley to be one of them...because we're THAT desperate. =/ I'm sad...I just don't want any of this to be happening. I'm angry...none of this is fair! I'm tired...I just want to be able to go to sleep ONE NIGHT without my last thought being Hadley and what her future will be...or IF it will be. I would really love to just let go of this...I was raised to believe that we can and should hand our worries over to God...that He will take care of them. God tells us not to worry about tomorrow. I just can't do it. I do really well when I'm with Hadley and even just hanging out with the boys during the day...but the minute the house gets quiet and I don't have her or the boys here yelling and running and causing general mischief and havoc I start to fall apart. What on earth would I do without her here. Who else is going to call me "Princess Mommy" and tell me that I'm a beauty queen? =)

Sorry for whining...I'm just not in a real 'strong' mood tonight. I'm sure I'll be better tomorrow. I wanted to share one more thing with all of you...I bought it in Hawaii. There is a poem on a print of a beautiful little Hawaiian girl who looks about 4. I'm not normally a mass produced framed poetry sort of person...but, it reached out and grabbed me. It reminds me so much of Hadley. I am always amazed that a 5 year old has taught me so many lessons on life and love. Anyway...here it is:


I expect to pass through
this world but once,
Any good thing therefore
That I can do,
or any kindness That I can show to a
Fellow creature...

Let me do it now;
Let me not defer or
Neglect it, for
I shall not pass
this way again.

-Stephen Grellet-


Have a Great Friday...=)

Angela

Wednesday, January 11, 2006 10:25am

So, I changed up the page a bit, not much, but I did...cleaned up a bit etc. Anyway...the new song is a bit of a tear jerker. It's been ages since I ve heard it. It's an old Acapella tune. Acapella is a christian quartet...they sing well, Acapella. =) Anyway...I listened to them a lot as an older elementary aged kid and through high school. I went to several of their concerts but, hadn't really thought anything about them more recently. Anyway...while we were in Hawaii Hadley and I were sitting out on the porch one morning looking out over the gorgeous ocean etc. I looked over and my sweet girl was stretched out on a lounge chair and was just basking in the sun. She looked so grown up...but at the same time that basic instinct to just want to absorb all that sunlight...stretching toward it...soaking it up...was soooo present and obvious. Piper's song popped into my head and played over and over...I immediately remembered all the words etc. I could hear it like it was playing right then and there. This song does tug at my heartstrings...but it also reminds me of all those who care for Hadley...our family and friends and those we've never met in person...holding Hadley up in prayer. Diligently praying that God's will be done in or little girl's life. That is above all what we should be rpaying for...right...I mean we've begged for a cure...God's will is going to be the ultimate outcome...might as well pray for it right? That scares me...at the same time it comforts me. I've gone through some very heartbreaking times in my life. Things I thought I wouldn't survive...not becuase of physical harm...but because my heart was broken...never like this...but, I did survive...God knew what was best...HE led me through...HE gave me these children that are the very center of my being. Certainly HE can see me through this journey of my daughter's life. God hears all of our prayers...Thank you for joining us!!!

Well, that got longer than I expected it to...but that is why the song is there...I'm not just trying to make people cry. It's in my heart...a way to say Thank You for becoming a part of our lives...Hadley's life...Thank you!

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


G'night
Angela





The Ba-ba fairy has come and gone...see below for the pics...I wasn't quite quick enough to get a pick of the ba-ba fairy herself...she's quick! =)



Hi all...

Hadley was quite tired when I picked her up at school yesterday. I carried her a lot of the way home (it was nice out so Keegan rode his bike and Liam and I walked) then as soon as we got home she asked to go to bed. Actually she TOLD me "It's time for take a rest...it's time for bed mama". Her teachers said she was pretty tired through the afternoon...but when they went outside to play she perked up a bit. Anyhow...She slept from a little before 3 until about 7:30...I forgot to put a pull up on her (DUH) so she woke up when she wet the bed. I had been going to her door to check on her and that last time she was sitting up in bed and said "Uh oh...Mama...Did Hadley spill the potty?" Poor girly. Anyway...she got up, got cleaned up and changed, changed her sheets etc and she took her meds and went back to bed. Then she was up for a little bit in her room so I went to check on her and she had pooped...so I changed that for her and she was finally ready to turn in for the night. SHe slept from about 11pm until about 9 this morning. When she woke up she had dark circles around her eyes and insisted on NOT going to school. I decided not to push her. She stayed home today...and so far she's laid pretty low. She's sitting on hte floor right now doing puzzles and watching Miffy. She is also insiting on wearing a pull up so I know she's not feeling well. I'm really hoping that a huge vomitting session isn't in our cards today. Hopefully she's just tired for some reason...maybe that besty tumor, or the seizures etc. Grrrr.

I feel like I jinxed her...I've been telling everyone how GREAT she's been feeling...how awesome she looks etc. She really hadn't looked that good or had that much energy for quite some time. Maybe even since before the tumor was found. Anyway...let's just hope and pray that this is a one day tiredness thing...or even that she's getting some kind of a bug or something (at least that will come and go)...if the tumor is causing this we're stuck with it. I've pretty much resolved myself to the fact that we're just gonna have good days and bad days...she's still doing quite well considering all that is going on right now. I'm just ultra sensitive to any sign of medical or neurological decline I guess.

I've decided that we have to move to Hawaii...something about it there had Hadley feeling great. It'll be a sacrifice but, I'll "take one for the team"...LOL. We really are l ookign for any and every excuse to go back. We miss it...it's really odd. I almost feel homesick. Weird....

Keegan is currently residing on cloud 9. His "girlfriend", Bianca and her little brother Ethan, stayed over last night. They have a new baby brother and their Mama and baby are still iln the hospital. THeir daddy wanted to be there with them so they are hanging out with us. While Keegan secretly, or not so secretly, hopes Bianca's parents will never return, I think she is ready to see her baby brother and parents again. They are such sweet kids. It's been really fun having them here. It's always fun to see Keegan interacting with kids his age. Iguess you may not understand it unless you've had a kid who struggles like Hadley does socially. It's sucha miracle to watch him running arond the house playing make believe and sharing his toys etc. Even Liam is excited to have a playmate around...although he's needed a lot of reassuring that I am still HIS mommy and Ethan still has HIS OWN mommy. Ha ha...=)! Too cute.

Alright...well...I guess that's it for now! Don't forget to check out our Hawaii pics in the journal history if you haven't seen them yet!

With Love and HOPE....
Angela


I figured I'd add a little Liam news...The Ba-ba Fairy is visiting our house during naptime today! It's time for the ba-ba to go bye bye...he's two...he's growing up...he understands that the ba-bas are going bye bye and that he is getting something new in it's place. Now if we can locate a "bink" fairy in the yellow pages we'll be in business. Baby steps...poor kid can't go cold turkey...=)

Anyway...here are a few pics of Liam preparing for the baba fairy...

One Last Good Bye...I'll miss you ba-bas!!!


Putting all the ba-bas and ba-ba accesories in the box...


Wrapping it up[ nice so the ba-ba fairy can take the ba-bas to the new little babies who need them!


Writing a note to the Ba-ba Fairy...Dear ba-ba fairy, Thank you for the ba-bas. I don't need them anymore because I'm a big boy now. Please takem to the little tiny babies. Love, Liam


ANd last but not least setting the ba-ba parcel outside his bedroom door so the ba-ba fairy knows just where to find it...she's a busy fairy you know! =)



PS...I got the idea from our pediatrician...she's a pretty cool cat that pediatrician...how many peds offices do you know that have a ba-ba fairy on payroll? Ha ha!

I'll update later and let you know how it goes and post pics of what the ba-ba fairy left him in exchange for the ba-bas. =)

Angela
aka The Ba-Ba Fairy



Look Liam...the ba-ba fairy came!!!


The first two of 4 special new big boy cups...2 are sponge bob and 2 are -be dazzlers...which are very cool!


Candy and cool new BIG BOY cups...could it get any better?


I AM smiling!!!



I'd smile but my mouth is full of Gummy Savers...yeah that's it...ha ha!



Well, we have a big fan of the ba-ba fairy in our house. So far Liam hasn't even mentioned his ba-bas we'll see how bedtime goes...I have a funny feeling that some water in his cool new songe bob cup will make him happy! =)



Hadley has been resting pretty much all day...I got her dressed in leggings and a t shirt this morning so that we could walk Keegan and Bianca and Ethan to school...as soon as we got home she was stripping down to her pullup again...she went in and put on a clean night gown and came back and told me she wanted to watch "Nascar" Madagascar in Keegan's room. She seems a little better this afternoon but, she still looks tired. I think we're gonna go for a walk in a few minutes...maybe some fresh air will do her some good!

Thanks for checking in on us!

Angela and the rest of the Fox "Crew"

Monday, January 9, 2006 4:35pm

I wanted to try and explain in more detail what is going on right now with the MRI's etc...I realized that although I know everything that is going on...the rest of you don't...(You mean you aren't listening to my phone calls and can't read my mind??? hee hee)...

It's all kind of complicated but basically this is what it boils down to:

!) The only treatment options we have are clinical trials
2.) There are no clinical trials open that Hadley qualifies for right now
3.) Before a patient starts a clinical trial they have to have a series of scans/bloodwork etc no more than 7 days beofre they start...to check general health and to have an accurate reading of the disease. (In hadley's case size of the tumor).
4.) Since there are no trials right now for her to start we are going to wait the two weeks HOPE that something opens up and that she can do that scan and then start the trial. (If we do the scans now and there is no trial open then we will just have to repeat the scans when one does finally open).
5.) Of course if Hadley becomes symptomatic or if too much time goes by then we'll check on the tumor to see what's going on. We know it's growing...and fairly quickly...although it has grown faster in the past...but you can never tell what part of the tumor and which one is going to grow...in what direction...wether it'll block a ventricle etc





***Don't forget to check out the Journal History for the original Hawaii updates and pics!!!***




Hi all...

I just got a phone call from UCSF. Hadley's MRI for tomorrow is cancelled. Basically what it comes down to is that we are counting on a clinical trial that Hadley qualifies for to open up...there aren't any right now, and she's feeling ok...SO we scheduled another MRI in 2 weeks...for 1/24/06...and will HOPE that a spot opens up on the one other trial that she qualifies for. As soon as I'm done with this entry I'm going to the PBTC site to look up info on the trial. I'll post it and the link as soon as I get it.

I'll post more pics in a bit...I had a bunch all ready to go earlier and our computer automaticaly restarted after an update. Grrr...so I left to pick Hadley up from school with a whole update and pics almost ready tp post and returned to a blank screen. Ugh...I'll get those ready as well and post asap.

Please Pray that a treatment is found for our Hadley...pray that it WORKS...that we can get rid of this nasty, nasty tumor for good. Hadley deserves to beat this and get as much of her life back as possible. This horrible beast has tried to steal nearly 2 years of our baby's childhood...while it may have stolen away a lot from Brandon and I...Hadley RARELY lets it keep her down! I'm trying to learn something and do the same. Keep smiling...Keep praying...kepp boldly asking God to cure our Girl!!!



Mahalo to ALL for your Love, Thoughts, Prayers, and HOPE,
Angela and Family

Here are a few more photos...teh wha;es are a little hard to see as I didn't have zoom on the underwater camera...lol...

Saturday, January 7, 2006 2:40pm

Here are a few more photos...The original update and photos are at the bottom of the journal! =)



Uncle Evan and Keegan at Lydgate Park Beach (between Kapaa and Lihue). Yes, that is UNCLE Evan NOT Daddy...although the kids have always gotten them mixed up from time to time...ha ha.


Keegan and Liam all zonkered out in the rental car


The COOl Fire Dancer at the Luau. Amazing!


A Shot of the family at the Luau. We're sending this one out as a photo greeting card for Xmas thank you's...


Gramma and Grampa Fox (daddy's mom and dad) and the kiddos at the luau. =)


Gramma and the boys on the beach...


Hadley and Keegan in the water at Lydgate park.


Hadley...her hair is in her face so it might e hard to see...but look closely at the expression n her face. EVERY beach we went to and EVERY time we went as soon as she could see the beach and hte water...she said "wooooowwwwww" and took off running for the water...


Seconds after the "WOW"...


Mama and Auntie Hayley keeping Hadley safe in the "big Water".


The kids waiting for the hula show at the Luau to start. What well behaved kids...


Uh huh...Turkeys...


Muscle Man Keegan.


Oh yeah Keegan...look at those emuscles!


Liam and Gramma


This is where Liam preffered to spend his time at the beach (anywhere as far away from the water as he could get without me telling him he was too far away...ha ha)...


But, he did get closer...and sat and played int he sand...


And, although you can't see his face here...this is proof that he DID get in the water...ha ha.


Liam at "Pizetta" before Pizza...


and...after Pizza! Ha ha!

Alright I'll try and get more up as I have time...=) We're going to try and get to Costcoc to develop film today...if not today then tomorrow! Promise! =)

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


The view from our condo on Kauai. We stayed at Outrigger's Lae Nani Condominiums. Gorgeous view, great beach, great condos!!!



Hadley and Mama at the Luau we attended at Fern Grotto. Mahalo to the Smith Family! We had an amazing time.



Mama and Hadley at a beach on Kauai. Ha ha...Neither Brandon or I can remember the name of the beach. But it was up past Hannalei on Kuhio Hwy. It was gorgeous! A little too 'big' for the kids to really get in though.



Hadley, Mama, and Daddy on the tram at Smith's Family Luau.
< BR>
More pictures will be coming soon! We had 'issues' with our digital camera. The batteries didnt' want to charge and, of course, it doesn't take AA's. Oh well...we bought another camera and took about 4 and a half rolls of film with it. We'll add more pics as we get them. =)

We, obviously, arrived safely in Kauai...we had an amazing time while there...and now we're home safely...MAHALO (thank you) for your prayers! Hadley did WONDERFUL!!! No pukies!!! WOO HOO!!! Very few seizures...Yay...AND of course, she had a TON of fun!!! I'll give ya quick re cap of what we did...and I'll try to get into more detail later. We're still rpetty exhausted and haven't even gotten the suitcases out of the car yet! Ha ha...(we took the red eye home...took off from Lihue (Kauai) at 10:45pm arrived in San Francisco at 5:40am (both local times) and arrived home in Alameda at about 7:45am. We pretty much went straight to bed and slept until noon. We've got so much to do the rest of the weekend to try and get back inot the swing of things...=). Brandon and I are both dragging pretty hard. Partialy out of exhaustion and partialy b/c we;re so bummed to be home. Ha ha! We prefer to look at our life here on the 'mainland' as our long vacation in California...and are eagerly awaiting going home to Hawaii! =) We had a WONDERFUL time. We went to a Luau...we all enjoyed it but, I think Liam was the most captivated. The food was great...Fern Grotto is gorgeous...and when Brandon asked Liam if he saw dancers Liam's reply was..."Yeah, GIRLS...NO SHOES!!!". How cute is that!?! He's 2! =) We also went on a 5 hour whal watching and snorkeling trip. It was awesome too. We saw 6 or 7 humpback whales...an uncountable number of dolphins, several Sea Turtles, some Mahi Mahi, Flying Fish etc. It really was awesome. The sea was a little rough that day and Mama had a bit of a hard time. I wasn't sea sick for about the first 15 or 20 mins. Ha ha. I only 'fed the turtles' once...so I think I actually did pretty good. =) It was a gret trip and totaly worth feeling groggy for a few hours. We did a little bit of Snorkeling thanks to our rentals from "Snorkel Bob's". Our lst adventure was to a tatoo parlor. I got my first tatoo. =)

There are five Turtles. One for each member of our Ohana. mine and Hadley's have flowers on their shells. The 'boys' are plain. The only tatoo I've ever really wanted was something that said 'family' because that is the most important thing to me. When we got to Hawaii I knew exactly what I wanted. Now I have a representation of our Ohana with me forever! =)

I think we all had a blast. It was a wonderful break from reality. We really really needed it...more than we realized I think.

I'll update more later with more pics etc.

Please remember Hadley in your prayers this week. Her MRI etc is on Tuesday am. We have a lot of big decisions to make based on this MRI. I'm dreading it. Please pray long and hard for Hadley's miracle...we could use it about now. =)

Again Thank you so much for all your prayers and thoughts...it was so nice to come home to so many guestbook messages. =)

Aloha and Mahalo,
Angela and Ohana

Wednesday, December 28, 2005 4:45pm

Editing in AGAIN...to ask for big prayers for our baby girl. Hadley was acting funny about her tummy all morning...a little testy and maybe like she had to go poo poo. THen at 11am she started vomitting again. Each time it is worse than the last. She vomitted until about 12:15 and is finally resting on the couch. I don't forsee her waking up anytime soon. She really looked terrible and the only relief she got was lying in a warm bath in a dark bathroom with her ears and most of her face under the water. SHe just laid there with her eyes closed for quite a while. SHe started falling asleep so I tried to move her so she'd be more comfortable to fall asleep and it all started over again. Poor dolly. PLEASE PLEASE PLEASE pray that this isn't how she spends her vacation. This takes everything out of her and leaves her feeling crumby for the rest of the day. PLEASE pray that this med kicks in and starts working ASAP! It hurts my heart so much to see my baby feeling this way. Thanks ya'll.

With Love and HOPE
The Hawaii-bound Foxes

Wanted to add a link to a People of The Year article on the US Coast Guard! http://abcnews.go.com/WNT/PersonOfWeek/story?id=1450167

Of course WE think that this recognition should have come well before Katrina etc...our Coasties really deserve this recognition...but, "we'll" take it when we can get it. =)



Xmas pics at the bottom of the journal!



Hi all...we're back from the clinic. I think we finally have an answer (and a prescription to boot). Hadley has been diagnosed with "abdominal Migraines". Yes, it is apparently a real diagnosis. In fact most kids diagnosed with it will go on to have full blown migraines as a teen/adult. Periactin was prescribed to try and keep thses episodes at bay. We're supposed to give it a week or two to see if it works. Which ends upworking out well since we will already be in the clinic on the 10th. Please say a prayer for Miss Hadley that her vacation (and esp. the flights) isn't disrupted byt this new issue and medication.

Thanks for checking in on us. Much to do to get ready for vacation...I'm SO behind!!! What else is new...=)

Angela


Here are those Christmas pics I promised...=)



Brittany, Devin and Gary. My cousin Keith and Suzie's kiddos.


Hadley and Aunt Kim at Christmas In The Park in San Jose.


Keegan on the merry go round at christmas in the park. He was SO proud that he 'got' the dragon.


Hadley and Aunt Kim on the Merry Go Round


Aunt Denise, Desire, Aunt Kim and Keegan on a tugboat ride.


Another one of the tugboat ride...this time you can see Hadley.


TOy Soldier Keegan


All the kids go tflasshing lights to help us keep an eye on them...Liam's was a binkie...LOL...the poor kid is gonna graduate from college witha binkie in his mouth. =)


Papa and Hadley...so sweet!


My cousin Chrissy and her daughter Desire. Des..this is why you just smile and don't try to hide from the camera sweetie...hee hee...I'll post the pics anyway...even if you have a goofy smile in mid escape...Hee hee...


The kids all got matching jammies from Santa for Christmas eve. It's funny that santa enjoys Gymboree as much as Mommy does...LOL


Mama's cousin Suzie and her son Gary.

The first shot of the massive mountain of gifts...


shot #2

shot #3...ok..is that embarrasing or what...and that's before Santa came. Spoiled lately?!?


Keegan diving into his stocking first thing Christmas morning...


Liam and Keegan got Light Sabers from Santa...chwoom, chwoooooom...hee hee

Hadley's favorite stocking loot was a new princess crown and a koosh ball.


Santa works fast...he was able to fill that last minute request for that R/C Dinosaur afterall. =)


And last but not least a shot of the poor kids buried in the car on the way home...=)


Good thing it's a short ride home, huh, Liam...



I didn't take a lot of pics of the kdis opening gifts. It was just too hard to keep up with all 3 and take photos too. I decided to just put the camera down and enjoy watching their faces. =) Sorry it took me so long to get these up. =/ THANK YOU to everyone who sent such wonderful gifts to the kids. They ahd an awesome christmas. Our plan is to take a family photo in Hawaii and use it for photo thank you cards...so, be looking for thos in the mail in January!

We leave tomorrow evening...we're staying in a Hotel out by SFO to avoid rush hour Friday am. SO, this may be your last update until we return from Hawaii. Don't go into withdrawl ok....ha ha. Happy New Year to all of our wonderful friends and family...we are so blessed to have such a huge network of support. =)

With Love and HOPE
Angela and The Crazy Fox Crew. =)

Tuesday, December 27, 2005 5pm

Editing in to say that our awesome Keanes are coming to the rescue today. It turns out that Miss Angela is working earlier thean usual (so she's getting off earlier than normal too)and is insisting that I "let" the boys come play while Hadley and I go into the city. What a lifesaver!!! The more I thought about it the more impossible the sittuation seemed. There is a good chance that since Doctor Banerjee (the only doc in the office who really 'knows' Hadley) isn't in AND since we're supposed to be flying on Friday they will likely want to do a quick CT scan to make sure that growth hasn't caused any tumor or CSF pressure on the brain. I'M assuming that's not what it is since it's been going on for over a month and her MRI a few weeks ago didn't indicate any remarkable pressure. I suppose it's always a possibility though. Anyhow...if they want to do anything like that...or even just labs would be hard with all 3 kids there. In order to do a CT without sedation I have to be able to go in with her and sing to her and reassure her that everything is OK and remind her to hold very still. For labs...she just doesn't like doing labs there b/c it's not her usual place and she's had a few bad experiences there. The rooms are tiny and the boys, like with the CT, would have to wait outside the door. I'm just not comfortable with that. My boys are prety cute ya know. =) Someone might nab em.

Anyhow Miss Angela and Mr Dan are saving the day and giving up a 'family' day (mr Dan is on leave today) to help me out. Thank you Keane's!!! You sure know how to take a mama's stress level down a notch or 10!!! =)

I'll update when we get home!

The Mama



Please say some prayers for Hadley and the rest of the family. Hadley is throwing up AGAIN. This has been going on for over a month now. We have an appointment tomorrow at 1:30. I'll be taking Hadley and the boys by myself as Brandon can't get out of work. We have to go to UCSF so that means driving into the city, navigating the campus, and waiting in the clinic by myself with a feeling crumby 5 year old, a nearly 4 year old and a 2 year old. Oy...

Please pray that we can figure out WHY this has been happening. I'm tired fo runningto the docs office all the time and leaving with no answers. I'm tired of seeing mny baby feeling so poorly. She doesn't deserve this.

I'm having an attitude...please be thinking about me too. If you were an unlucky passerby in the Bay St. Barnes and Noble in Emmeryville...we're sorry...we're pretty sure she's not contagious! =/

Thanks for checkin in on us...please pray that Hadley is feeling better for our trip to Hawaii. Ugh...

Angela