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Tuesday, March 31, 2009 3:10 PM CDT Hello friends and family!
It is time to join our team for the CureSearch walk in Omaha. It is June 6th at Village Point from 8am to 10am. It will be a lot of fun and is a great opportunity to help out a great cause.
You can join the team Brooke's Barkers by going to www.curesearch.org/events. This year there is a $10 fee per walker. This counts toward your donation and is tax deductable.
Please help us raise some money and recruit as many friends and family to join us that you can! We hope you can join us and look forward to having you on our team!
Tuesday, March 3, 2009 1:28 PM CST Everything is going good in the Brion household. I don't seem to have much to report which I know is a very good thing. Sometimes no news is good news.
Gavin is almost 13 1/2 and we are lucky enough he does very well in school and we don't have to worry about that. I've been feeling a little older making myself realize lately that my little boy is not a little boy any more but a teenager. He loves to play his PSP after school and sometimes I think he should be playing or something and that's when I realize he's not a little boy anymore. Then yesterday he got all excited and wanted to go sledding. I was so excited! Then I realized it was because there were girls going sledding!
In 2nd grade I never would have believed the kid would ever read a book, but his 3rd grade teacher told him that everyone loves to read, you just have to have the right book. He believed her! He's now a reading fool!
Blake is 18 months now. He loves hot wheels cars, Elmo and being outside. He also loves anything that Nick or Gavin has or does. Nick has been taking a turkey sandwich from home for lunch, so Blake has been having turkey sandwiches for breakfast! He jabbers and jabbers but doesn't say many words yet. I seem to be the only one not worried about that. He's a very busy boy. He is definitely a blessing from above and has done more for us than he will ever know.
I've been really missing Brooke. Valentine's Day is always hard for some reason, but just the day to day. I imagine how she would be with Gavin and how she would be loving Blake. I just really wish she were here.
Nick roughly finished off the attic for me so I could have some more storage. We just don't have much room for "stuff" otherwise. I am so excited about it! He even put in a drop down ladder for easy access! He's headed to Vegas next week for a golf tournament with our friend and neighbor who is a golf pro. They went last year too and he's pretty excited about it!
I just take care of the house and the family. I've become aquainted with facebook! That can be very addictive! I went to Celine Dion last week with a couple friends and that was fun. We decided last minute to go to the cabin last weekend and went snowmobiling! I'll put a picture of Blake in the photo album! Oh yeah, I started boot camp too! Just what I needed! We just seem to keep busy.
I don't have much else to report without just getting wordy. Thanks again for checking on us!
Monday, January 12, 2009 7:59 PM CST Our holidays were good, although someone is missing and always will be. We kept very busy and got to see most of our families.
We went snowmobiling in WY with my brother, his wife and their 3 boys. Blake stayed home! That was a lot of fun.
Gavin is hoping for a snow day tomorrow! Everything around town was cancelled tonight, but by morning may be just fine. He sure is hoping though!
Blake is getting more teeth now so it's hard to get much done today! Gonna have to keep this short!
(Tuesday) We went to Marley and Me the other night. At one point Marley went to the mailbox to wait for the kids to get off the bus from school. It reminded me of Snowball knowing when to go outside to wait for Gavin & Brooke to come home from school. He'd go out a little early and just sit at the edge of the deck because they came through the back yard. He'd get so excited.
I'd like to think God sent Blake to us, but sometimes I wonder if Brooke didn't have him sent here for Snowball! I'll put some pictures of Blake and Snowball on the photo page.
Tuesday, December 16, 2008 5:06 PM CST Every snowflake comes to the earth
as a picture of our Saviour's birth,
because they are sent from up above
and remind us of God's care and love.
Each one is so intricate and small
because Christ sees the details of us all,
and just as two are never the same
the Lord knows and calls us each by name.
Snowflakes gently cover the world in white
and hide what's unlovely from our sight,
showing us how He covers our sin
and gives us His grace when we come to Him.
So may every snowflake bring Christ to mind
and in every bit of white may you find
a reason to celebrate anew
and a reminder of His love for you.
(Holley Gerth)
Praying your Christmas and New Year are filled with God's many blessings!
My friend Jill sent me this e-card and I absolutely loved it and wanted to share it. Brooke loved the snow and so do we! We are finally getting a couple inches of snow today!
Monday, December 8, 2008 10:14 AM CST Today it's 3 years Brooke has been gone. Hard to believe. I don't know if we're just getting more used to her not being here but time does help. I also know having Blake around helps a lot. If it were just me, Nick & Gavin it would still be harder - too quiet and not enough energy around here. Blake is definitely a huge blessing from above.
Gavin got braces a month ago and when they scheduled his next visit she said how about Dec. 8 after school and I said that would work. It didn't even occur to me what day that was until later when I went to put it on the calendar. I think that said a lot, that that's not the first thing I thought of. In all actuality the worst was the days leading up to this day. I didn't seem to dwell on that as much these last few days either. It's funny how the weather makes a difference too. We don't have any snow and that year we had a ton of snow by now and Brooke loved the snow. She would sit in her chair and I would bring bowls of it inside for her!
So I think after Gavin's ortho appt. we will go to the cemetery and then maybe we can go out to eat tonight - for some steak!
Monday, October 13, 2008 1:37 PM CDT We just spent another weekend at the cabin. I wasn't prepared for the cold and rainy weather. We had fun though. Nick and Gavin put up some more tree stands and Blake & I went to my Grandma's and watched the football game with my parent's and a couple aunts.
Sunday we went to the Lambert's farm for some hayrides! That was A LOT of fun! We picked some pumpkins and ate delicious caramel apples. Blake got to ride the Molly Trolley! I thought he was too little but I turned around and there he was going for a ride! Nick had put him in there and he couldn't smile any bigger! Anything with a steering wheel is a hit. He just wants to be outside all the time, too. I don't know what I'm going to do when it gets cold. I need to get him some boots. I'll just have to bundle him up and take him out!
Gavin is full swing into 7th grade. He has a little more homework this year. It still doesn't seem like too much though. The guys are getting ready for hunting season. I'm just trying to keep up with everybody and keep things in order around here!
Brooke loved Halloween and this year seems a little easier. This is the time of year she was really getting sick. When they told us there was no more they could do and we put her on hospice. It's funny how those dates don't leave my mind and I remember them so clearly. I was thinking about it at the cabin. She never got to enjoy it like I know she would have. When we took her there she was already on hospice and so sick. The weather itself brings those memories. I'm getting used to it though. She would have loved it at the Lambert's! She would have really loved Bethany's new dog Blizzard! She's all white and 65 lbs. at only 6 months old! Blake loved her up for Brooke! I think Brooke was there with us though. I'm sure she was!
Thursday, September 11, 2008 9:16 PM CDT We've been keeping very busy around here! School started, Blake turned 1, we went to Jamaica and Gavin turned 13!!!
Gavin is full swing into 7th grade. He decided last minute not to go out for football. Maybe after a year off he'll be more excited for it next year.
We went to Jamaica for vacation and missed Blake's birthday:-( He celebrated at Grandpa & Grandma's! We got to Jamaica right after the hurricane so it was a little rough. We still had fun though. Gavin jumped off a 35-40 ft. cliff at Rick's Cafe in Negril. He thought that was great! I think I'm going to sign him up for diving lessons! He's never been scared of that stuff!
We're back into tailgating at every home game in Lincoln. If you're ever going to be over there let me know and I'll tell you where we are. We're under the Horseshoe/Lottery sign on 9th street just north of the Lincoln Journal Star parking lot. We always have food and refreshments!! We also take a tv and whoever doesn't go into the game can watch it at the tailgate. Everyone always comes back out at half time and a few go back in!
We are sure having fun with Blake. He is very good. He talks a lot! We wish we knew what he was saying! He'll ask you questions and tell you a whole story! He's also walking. Still a little wobbly but does very good!
Thanks again for checking on us!
Monday, August 18, 2008 1:07 PM CDT Today is Gavin's first day of 7th grade. So hard to believe! I never thought about taking his picture this morning. He probably wouldn't have wanted me to any more anyway. He wasn't too excited for school to start, but it wasn't hard to get him up this morning. He's always really good about getting up. I just know by the end of the week though, it will be catching up to him and he'll probably be crabby! He's used to sleeping in all morning!
I found a poem from another site I'm going to put on here. I felt like I could have wrote it.
Because of you,
I love a little more.
Because of you,
I take time to give an extra kiss good-bye.
Because of you,
I have a new favorite song.
Because of you,
There may be dust on the windowsill, and I don't care.
Because of you,
I live today before I worry about tomorrow.
Because of you,
I don't give up quite so fast.
Because of you,
I still believe in rainbows.
Because of you,
Now I can help or listen more.
Because of you,
Today, I am me.
Eileen Wernsman
Tuesday, August 5, 2008 2:00 PM CDT Two years ago, Gavin and I traveled to Washington D.C. for Gold Ribbon Days. We had meetings with Congressman Lee Terry and Senators Chuck Hagel and Ben Nelson. It was quite a life lesson going to their offices and having appointments with them. We told them about Brooke and asked for them to support the Conquer Childhood Cancer Act. We were there with another family from Nebraska whose son died from Wilm's - Josh Brestel from Lincoln.(www.caringbridge.org/ne/josh) We met many other wonderful families who had brought their wonderful survivors with them and those who had lost the battle against cancer like Brooke.
I'm so happy to report the bill got passed and President Bush signed it into action last week! Our little Wilm's survivor buddy Wyatt Rech got to be there with the President when he signed it. There is a great photo on his web page! www.caringbridge.org/mn/wyattrech. He looks so handsome in his suit! He and his mother along with the Brestel's from Lincoln, worked tirelessly to get this bill passed and we thank them from the bottom of our hearts for all their hard work and dedication!
Please stop by their sites and tell them "Thank You!".
Thank you for continuing to keep us in your prayers and checking on us. Blake is such a gift from heaven and Gavin is such a wonderful son and big brother. We feel so blessed to have so many wonderful friends and family who have cared so much about Brooke and us. We can never say thank you enough for everything. THANK YOU and GOD BLESS YOU
Wednesday, July 30, 2008 3:02 PM CDT Yesterday we stopped at our second home: not the cabin, but Target. First of all I'm mad at them for all the remodeling and rearranging and taking away my drive up services. We go in the new entrance and started at the dollar section - Lisa Frank stuff that Brooke used to get and I wanted to buy her some more. Then it was the girls belts I had to walk by and Brooke loved belts. She definitely would have wanted that silver sparkly one. Next I walk by the clearance aisle and see the Little Pet Shop dog. I almost bought it and set it up at her grave. By now my heart is in my throat and I haven't even gotten to the school supplies. Why does it still have to hurt so bad? 2 1/2 years doesn't seem like very long any more. 10 years will still be hard. Yet it's been forever since I've gotten to feel my baby's breath and hug her.
Today is new day. A little better, but not much. Tomorrow may be totally different. You just never know.
Friday, July 11, 2008 9:14 PM CDT Blake is asleep so I might actually be able to give an update!!!
First of all, after a week at the vet, we had Gavin's dragon home a couple days and he died. Wouldn't you know it was right after Nick & I took off for western Nebraska for a couple days golf with friends. So Grandpa took Gavin & the dead dragon back to Petco and they gave him a new one. Grandpa said Gavin did all the talking and he was so proud of him. Gavin told us he didn't even have to cry to get the new one!!!
We've spent a lot of time at the cabin and were in Butte for Pancake Days. That's always fun with the carnival and parade and we get to see so many people. It won't be long and Blake will want to be riding all the kiddie rides. Brooke and Gavin always loved Pancake Days. We had a lot of people join us at the cabin for the 4th of July. We went to the lake and did some golfing. After being home only a few days, Nick & Gavin took off for Canada and are there fishing now. Gavin's friend that lives next door is gone, so I have to take care of Dragon and feed him live crickets. Not my favorite job at all!
Blake is crying so I've got to go. Will try to add more later.
Wednesday, June 11, 2008 7:24 PM CDT Thank you to everyone who walked with us and/or donated to Brooke's Barkers team for the MileStones walk for CureSearch. I believe our small but mighty team raised a little less than $1,000. The event itself raised over $210,000!!!! This is the 3rd year for the walk. Thank you to the volunteers who spend so much time organizing and putting this together. We delegated our team funds to go to the Wilm's Initiative. When I hear how much is going to the Wilm's research from our walk I will put it on here. We got to see so many friends. There was so many people there that I didn't get to see some that I know were there. What a great turnout!
Monday was Brooke's birthday. The boys and I met Nick for lunch at Lone Star - one of Brooke's favorite places. Gavin ordered her favorite - the kids lunch steak. It is now medallions. He was a little disappointed it was changed but we had a nice lunch. Then we took balloons to the cemetery and Gavin sprinkled about 200 orange tic tacs on the ground for Brooke! We then took Gavin's new bearded dragon to the vet. He got him exactly a month ago and hadn't been looking too good. Dragon has spent the last couple nights in the hospital! I never thought I'd be taking a lizard to the vet in a million years! You can't just let it die though! I told Gavin it was appropriate though. Brooke wanted to be a vet and a dog groomer and there was a dog groomer hooked right next to this vet we went to! (In her spare time she was going to volunteer in the nusery at the zoo!)
We're sitting in the basement tonight while the tornado sirens keep going off. The tv says a tornado touched down at a boy scout camp so Gavin just called the neighbors to make sure it wasn't the one his friend is at. It's a different one.
New reports on tv while I type this: please pray for these families. It is unconfirmed that there are injuries and at least 4 fatalaties at the boy scout camp.
The following poem I got from a little girl's web site whose mom and I have become internet friends I would say. Her little girl Emily died and Gavin & I got to meet Wendy and her boys when we went to the CureSearch conference in DC.
'IN THE LIGHT'
A shadow of joy flickered; it is me.
I told you I wouldn't leave.
My spirit is with you.
My memories, my thoughts are
imbedded deep in your heart.
I still love you.
Do not for one moment think
that you have been abandoned.
I am in the Light.
In the corner, in the hall, the car, the yard --
these are the places I stay with you.
My spirit rises every time you pray for me,
but my energy comes closer to you.
Love does not diminish, it grows stronger.
I am the feather that finds you in the yard,
the dimmed light that grows brighter in your mind,
I place our memories for you to see.
We lived in our special way,
a way that now has its focus changed.
I still crave your understanding and
long for the many words of prayer
and good fortune for my soul.
I am in the Light.
As you struggle to adjust without me,
I watch silently.
Sometimes I summon up all the strength of my new world
to make you notice me.
Impressed by your grief,
I try to impress my love
deeper into your consciousness.
As you should,
call out to the Heavens for help.
You should know that the fountain of youth does exist.
My soul is now healthy.
Your love sends me new found energy.
I am adjusting to this new world.
I am with you and I am in the Light.
Please don't feel bad that you can't see me.
I am with you wherever you go.
I protect you,
just as you protected me so many times.
Talk to me and somehow I will find a way
to answer you.
I see you with my new eyes.
I am learning to help wherever you are,
where ever I am needed.
This can be done because I am in the Light.
When you feel despair, reach out to me.
I will come.
My love for you truly does
transcend from Heaven to Earth.
Finish your life with the enthusiasm and zest
that you had when we were together in the physical sense.
You owe this to me, but more importantly,
you owe it to yourself.
Life continues for both of us.
I am with you because I love you
and I am in the Light...
~ Author unknown
Monday, June 9, 2008 5:25 PM CDT Happy Birhtday Brooke! We miss you and your great smile and hugs and personality gallore! We love you more than anything! Hope you're having a great day in heaven with all your friends and dogs! We know you are! We love you more than anything in the world! Mom, Dad, Gavin, Blake, Snowball & Tiger
Wednesday, June 4, 2008 3:45 PM CDT Boy have we been busy! That's an understatement. We like to keep busy - less time to think too hard about missing Brooke so much. We went to Montana for Nick's grandma's 90th birthday. She is doing great and it was so great to see her. She's lived out there by her other son almost 6 years now and we hadn't seen her since she moved there. It was so nice to see her and give her a hug! We went to church on Sunday with her and then to Perkins. Then she showed us her assisted living place. They have a room on the 2nd floor with all large windows on one side that looks out on a small river and the mountains. We saw a deer out there while we were there! It was beautiful. We went to her favorite restaurant for her party. Nick's relatives that live there threw a great party for her. Grandma was even up dancing to the music! We also drove to Glacier Nat'l Park and went through Idaho and to Spokane, WA. What a beautiful part of the country. (We also went to Darby, MT!)
We were home 1 day then turned around and went to the cabin for the weekend. Gavin and Nick left from there to go fishing in Canada and will be home late tonight! I've been busy getting caught up with laundry and cleaning house with all Blake's help! It's taken me 3 days and I didn't even touch the basement. They'll be home late tonight.
The Milestones Walk for CureSearch is Saturday at Village Point from 8 - 10 am. You can still join our team by joining online with the link below or you can call me. If you just want to come walk with us to raise awareness that is great too! Or you can donate online to our team at the link below also. The money our team raises is being delegated to the Wilm's Initiative for Wilm's research. Something is going on with Wilm's if you ask me and the cure rates are NOT there right now. We know way too many friends that have died from it and so many other cancers. I was getting emtional this morning thinking about Saturday and all the kids we know that were there last year but won't be there this time. They will be there in spirit with us along with Brooke. She has so many friends in heaven it's unbelievable. It scares me to think "Who's next?"
We walk for our kids, your kids and the future generation of kids.
Tuesday, May 20, 2008 9:54 PM CDT Brooke's Barkers is finally up and running! PLEASE join our team or donate to our team's effort to help fight Childhood Cancer. The walk is Saturday, June 7 at Village Point here in Omaha. It is from 8am to 10 am. I put a link below that you can use to got to the walk site and click on 'join an existing team' or make a donation to our team. Even if you just want to come walk with us to help raise awareness, we would love to have you!
When Brooke was diagnosed with Wilm's tumors, we were told that was the good cancer to get. (As if any cancer is the "good" one.) 95 percent survival rate. I'd like to know where they come up with these numbers. We know 6 kids here in Nebraska treated for Wilm's at Children's during Brooke's treatments and today 1 of them is a survivor. Oh that's the good one to get allright.
I'm starting to become bitter about all this as more and more kids we know keep dying. Every month there's been somebody we know lose the battle over the last several months. Those are just the kids we know. I have to keep reminding myself of the kids we know who are doing good today and those still fighting.
The money Brooke's Barkers team raises is going to be designated to go to Wilm's Research. Beings I am so on the ball this year, we are going to wear the same Brooke's Barkers shirts as before or you can wear any dog shirt you may have or the kids might want to bring a stuffed dog with them. (I'm thinking next year I will be a little more organized and we'll do something different)
We have just been busy, busy around here which is a good thing. Gavin's last day of school is Friday. Thursday he has a field trip to the zoo that I get to go along and help with. First he said he didn't want me to go, then he changed his mind and said I could go so he wouldn't be stuck in a teacher's group. But I can't ride the bus. (Didn't want to anyway!)
Blake is crawling all over. He's 8 1/2 months and no teeth yet. He's been chewing on his fingers and drooling like crazy. Brooke & Gavin were both 9 months when they got their 1st tooth. He's such a carbon copy of them. My neighbor saw him the other day and said she couldn't believe how much he looked like Brooke. Every day is like deja vu to me.
Mother's Day was VERY hard this year. We had a wonderful day. It was beautiful out and we went to lunch, then Nick, Gavin & I golfed and then we went to Nick's mom's to grill out. But I held back tears all day. Then Monday I was just a mess and couldn't stop crying. I used to anticipate a day would be hard and then it would come & go and I would think, "Oh! I survived!" This time I just wasn't anticipating a hard day and it knocked me on my ___!
We've been doing a ton of golfing and going to the cabin. Hardly have any time to get yard work done. There's always something funner to do! Although we do a lot of work at the cabin. The guys just got the food plot planted and we put an electric fence around it. They fixed fence last weekend and we've been sealing the outside and doing some staining inside and also just got the front door painted finally. And don't forget how much help Blake is!!!! Snowball absolutely LOVES it up there. Gavin and the cousins have been working on a tree house. I will try to get some new pictures on here.
Please consider joining our team or walking with us on Saturday June 7!!!!!
PS It's more than just a walk, there is a lot of fun stuff going on for the kids!
Thursday, April 17, 2008 7:40 PM CDT BE BRAVE LIKE BROOKE.......GIVE HOPE TO HANNAH
The Brooke Brion Memorial Blood Drive Honoring Hannah Knudsen will be Saturday, April 26 from 8am to 1 pm at Picotte Elementary School; 14506 Ohio St. in Nelson's Creek.
To schedule your appointment to donate blood call Jill at 493-3655 or email at brookeblooddrive@cox.net.
It doesn't take much time.
It doesn't hurt.
It's the least we can do to honor these kiddos and help out all the people who need blood transfusions just to survive. I use to think blood donations were just for catastrophes - people who got in bad car accidents and lost a lot of blood. Boy was I wrong. Thousands of people need blood daily for the diseases they're living with, the cancer treatments that have depleted their good blood supply, surgeries, and much, much more.
You'll feel great after you leave. You will have helped save a life!!!! What an awesome thing you can do!
Hannah is our friend who is a 4th grader at Manchester Elementary. She has just relapsed with Ewing's Sarcoma. She, like Brooke, just wants to be a kid. She's done this before and to face it again is VERY depressing. She's had a taste of being normal again while in remission and now is having to do all the yucky stuff again. Missing school and her friends and being brave like no other.
Brooke would be a 4th grader this year which is so hard to believe. We miss her terribly. We're always talking about how much she would love Blake and all the things she would be doing with him. She would have been such a mother hen. I know she would have wanted another brother, too, because the one she already had is so great! I believe in my heart that Brooke knows Blake. I believe she knew him before we did. I think she helped send him to us.
Sunday, April 6, 2008 8:34 PM CDT (Monday 6pm We are home and Blake is doing great. Thanks for checking on us and for all your prayers. Also, the blood drive is April 26. I will get more info soon.)
Well, where do I start? I updated quickly the other day that Blake was in the hospital with pneumonia. It's Sunday and we're still here, but he is finally acting like himself tonight. He scared us really bad this weekend.
Friday I was so glad he didn't get a fever all day. He had run fevers for 10 days. But during the night he was crying a lot and I picked him up and thought he felt cool. Then a little later I picked him up and he felt cold to me. I called the nurse in and she was trying to take his temperature in his ear and I asked her what it was and she said 92.3 She tried it a couple more times and the best she could get was 94.4. I asked her if there was a Dr. around so she got a resident. The resident checked him out and said she didn't know why it was so low, but his other vital signs were ok so she thought he'd be fine and had the nurse take his temp under his arm and it was 95. So they left and after 2 weeks of no sleep and holding my cold baby I just kept getting more scared and just knew this wasn't right so I called the nurse back in. I started crying and said I wanted her to call our pediatrician. I said I knew she wouldn't care. (We love Dr. Desai & she's been our Dr. for 10 yrs.) She got another Dr. to come in. She was older and checked him out and said the same thing as the resident but got me calmed down enough I guess. Of course I held Blake all night and couldn't put him down. It's a scary feeling when you put your cheek up to your baby's cheek or neck and it's not warm. He just was not feeling good still - fussy and crying. So when Dr. Desai came in the morning I was so glad to see her. I just needed to see someone I knew and trusted.
We decided to get the infectious disease Dr. involved beings his pneumonia didn't look any better on the x-ray and his ear infection was actually looking worse after being on the iv antibiotic for 3 days. He said we should check for menningitis to rule that out and that from now on Blake's temp needs to be taken rectally. I asked why I seemed to be the only one so scared about his temp being low. They just didn't have an answer and said maybe it was just part of the way his body reacted to all this infection. I was just scared of him being septic, but they kept reassuring me that his other vitals were fine. His temp came up some during the day, but he still looked pasty and almost a little green. So last night they had to do the lumbar puncture (spinal tap) to get the spinal fluid to check for menningitis. They didn't put him out, just used local anesthetic and had to hold him in a c-shape and hold him still for quite an amount of time while they did it. I went in with him to hold his head and hand. He just screamed the whole time and turned beet red and was a ball of sweat when they finished. I was just happy to see that fight in him. He had been through the ringer. (He just loves to see anyone in a yellow gown and blue mask come in his room!)
Last night during vitals his temp rectally was 96 again. The nurse and I bundled him up and I layed in the recliner with him and she covered him up. He was restless and I was just sweating. She checked his temp again later and we had it up to 97.4.
We found out he does not have menningitis which was great to know. At least we ruled that out. Then today the cultures finally showed that it is Adenovirus. That's why he wasn't responding to the antibiotic. It looked on the x-ray like bacterial pneumonia, but it's not so they stopped the antibiotics. He's just going to have to fight it off himself.
This morning he had motrin again for his fussiness so I was anxious to see how he'd be when that wore off. His temp was 98.7 this afternoon. This evening he actually acts like he may have turned the corner FINALLY. Nick actually got him to laugh and he is in an exersaucer playing right now and talking and smiling at me. I haven't seen him act like this in over 2 weeks. I kept waiting for him to snap out of it and I think he just may have. He ate a whole deal of pears and had a couple ounces of formula. It's hard for him to suck on the bottle because of his conjestion. We'll see how tonight goes, but my guess is we'll get to go home tommorrow! I wouldn't be scared to take him home now that he's acting so good tonight.
Thanks for checking on us. It was just a long couple weeks and I was really scared this weekend.
I've been so pre-occupied I can't believe how fast the days go by. The BE BRAVE LIKE BROOKE Blood Drive is coming up at Picotte Elementary soon. I believe it is April 19. My mind is shot right now though so I will find out some more info on that and get it put on here. This year they also have some stylist who donated their time and are going to be giving haircuts for people who want to donate to "Locks of Love"!
Then the Milestones Walk for Childhood Cancer will be here before we know it. It is June 7 at Village Point and we will be having Brooke's Barkers team there again. If anyone would like to join our team and walk to raise awareness and money for childhood cancer, we would love to have you join us.
Friday, April 4, 2008 9:39 PM CDT Greetings from Children's Hospital. Yes, you read that right. I have to keep this short because fuss bucket is already fussing.
After 9 days of fever, 3 trips to the pediatrician and Blake only getting worse instead of better, we made it to the ER on Wed. and found out he has pneumonia and were admitted for our stay. Today he finally didn't get a fever since his morning motrin wore off. He is very fussy though because he still doesn't feel good. He just got some motrin just to help him through the night. We needed to see if his fever would come back though. He's not eating yet either.
I know we're not going home tomorrow yet, so hopefully by Sunday he'll be better. I'll try to keep updated, but got to go because he is crying now.
Friday, March 21, 2008 10:42 AM CDT HAPPY EASTER! It is a great time of year when we are once again reassured that we will be seeing Brooke again someday. I've been getting a lot of signs from Brooke this week. I think she knows when I need them. It had been awhile it seemed like.
I got a few Easter decorations out. Not all of them, but some. Some Brooke made and some that we used to decorate her hospital room with. Each holiday I get a little more motivated to do that. I think it will really help with Blake here that I will get more into it again. We haven't dyed eggs yet. Maybe tonight. I bought a ton because Nick won't admit it, but he loves to dye the eggs too and then he gets into it and would do more than the kids!
We will be staying in town and going to Nick's mom's on Sunday. Gavin is always excited for a day with the cousins.
Today I'm going to take some new flowers and Easter ribbon to the cemetery. I was at Michael's the other day buying them and I was thinking how I still get to spend money on Brooke, just not the way any mom wants to. I had tears in my eyes and was trying not to cry. Gavin noticed. He knew. We used to always go there to buy all the fun stuff. We liked doing all the crafty and artsy stuff.
Gavin has had some problems with eye pains and headaches. So after a couple trips to the eye Dr. and to the pediatrician, he had an MRI. It came back normal. We aren't sure what it is, but I asked him the other day and he said it seemed to be getting better and then yesterday said they were still about the same. I think it's getting better though. The pain doesn't last long enough for him to even take anything for it but it comes and goes throughout the day.
I didn't think it would be any big deal taking him to Children's for the MRI. Been there, done that so many times with Brooke. It was good to see all our old friends in that department again. But on the way to the hospital with Gavin I started teering up and couldn't believe how emotional I was getting. Nick met us there and was telling me later how he about starting crying in the lobby. I guess it was harder than we were anticipating and I also think just knowing that one test can change your life. He said he was thinking how this couldn't happen to us again and then started thinking of the families that we know that it does happen to again. There are families up there that have had 2 kids go through cancer. It does happen. Hard to believe. But I really think Gavin will be just fine, just had to have it checked out to make sure there was nothing there causing his pain.
Blake is doing good. He isn't crawling yet but very close. He can sit up and play very well. That is nice. He likes to help me type! He's a very happy baby!
We want to wish you all a Happy Easter and hope everyone is doing well. (I wanted to put something inspirational on here but can't think of anything off the top of my head and Blake seems to be needing me so maybe I'll add something later!)
Monday, February 25, 2008 5:39 PM CST We just returned from some fun in Telluride again this year. The weather was great, 40 degrees and the sun was shining. They've had the most snow this year than they've had in years. The sides of the road had snow as high as Gavin. Gavin & I skiied and snowboarded 3 days straight. Nick got one day in before being stuck in bed with the flu. He was being a good sport about us taking off to the mountain to have fun while he was in bed miserable, but I know the couple days he was sick got really long for him. I was so afraid Gavin and I would be sick for the plane rides home, but it didn't hit Gavin until the night we got home. I never did get it. Yeah! I don't know how I would have taken care of Blake. Mom's just can't get sick, you know!
Blake got to stay with Grandpa & Grandma while we were gone. That sure made it a nice trip for us. I didn't even worry about him a bit knowing he was getting more attention than he would probably be getting at home! Oh yeah! He also got a hair cut while we were gone! When Grandma's in charge she can do whatever she wants!!! He looks like a little boy now!
I kept seeing all these little kids taking their ski lessons and seeing all the little ones in their green vests like the one Brooke has on in the picture. She is always on our minds. Sometimes I would ski down the mountain with tears in my eyes but I also am always happy that we had the opportunity to make such great memories. She was so full of a spunk that we miss dearly.
Monday, February 25, 2008 5:39 PM CST We just returned from some fun in Telluride again this year. The weather was great - 40 degrees and the sun was shining. They've had the most snow this year than they've had in years. The sides of the road had snow as high as Gavin. Gavin & I skiied and snowboarded 3 days straight. Nick got one day in before being stuck in bed with the flu. He was being a good sport about us taking off to the mountain to have fun while he was in bed miserable, but I know the couple days he was sick got really long for him. I was so afraid Gavin and I would be sick for the plane rides home, but it didn't hit Gavin until the night we got home. I never did get it. Yeah! I don't know how I would have taken care of Blake. Mom's just can't get sick, you know!
Blake got to stay with Grandpa & Grandma while we were gone. That sure made it a nice trip for us. I didn't even worry about him a bit knowing he was getting more attention than he would probably be getting at home! Oh yeah! He also got a hair cut while we were gone! When Grandma's in charge she can do whatever she wants!!! He looks like a little boy now!
Wednesday, January 30, 2008 11:21 AM CST Happy Valentine's Day! I was going to try to be cool and put a cool background on here beings I now know how to copy and paste, but ended up losing anything that was typed on here! Oh well!
We've been doing good. We spent a fun weekend at the cabin. Saturday, the Lambert's spent the day with us for snowmobiling and sledding and prime rib for supper at the Nebrask Inn in Gross! Gavin took a friend along and when we got to the cabin we turned up the heat and told DJ we were going to go to the Gross bar while the cabin warmed up. He wanted to know why we wanted to go to a gross bar! (It's not gross! That's the name of the town! The food is great and it's just very old with quite the atmosphere! Should be in a movie!)
Only in Nebraska can you go sledding and snowmobiling from all the snow and then 2 days later be cleaning out the garage on a 57^ day and then the following day not want to go outside because the windchill is below 0^!! We stay here though!
Blake is growing. Getting funner all the time seeing his personality come out!
We are very proud of Gavin for being chosen for a student of distinction award at his school this month. They pick a boy and a girl from each group(there are 2 for each grade level-like 6A and 6B) every month for this honor and he gets to have lunch with the principal today. I told him I was going to come have lunch with him today but he didn't want me to! I guess that's not cool anymore and that's just one more embarassing thing I would do to him! He really is a great kid. There are 1200 students at his school in grades 5-8, so I think that's a pretty cool thing to be chosen for! He didn't act like it was any big deal.
Please keep our friend Hannah in your prayers as she has just found out she has relapsed for Ewing's Sarcoma. Hannah just turned 10 and now has to travel down another long road while just wanting to be a kid. You can check on her and send her well-wishes at www.caringbridge.org/visit/hannahknudsen.
Wednesday, January 2, 2008 12:47 AM CST Happy New Year! We hope the holiday season was good to everyone. We have kept extremely busy with lots of family get togethers and a trip to the cabin. The picture on here is what we put on our Christmas card. I asked Nick how we could incorporate Brooke in the Christmas card and he had the idea of taking our picture at the cemetery with Snowball and Tiger too. (That's what we'd have to do if Brooke were here!) Let me tell you that Tiger will NEVER get to go anywhere with us in the car again! The fur was flying! He peed in his box and I was afraid it would get on my car, so we had to find a dumpster to throw that away and then he was loose in the car because Gavin couldn't keep control of him! Nick met us at the cemetery because he works right by it. Tiger was on my shoulder at one point and I told Gavin people are going to think I'm the crazy cat lady driving around with my cat. Great idea, Nick! (You see who he got to hold and who I had to hold!) Brooke loved every minute of it I'm sure!
There hadn't been any snow at the cabin right before Christmas so I asked Brooke if she could pull a few strings for us and maybe we could have some snow for snowmobiling when we got up there. Take a look at the picture on the photo page! We took off Christmas day and headed up there and it started snowing about 1/2 way there! Gavin and the cousins had a blast snowmobiling and sledding! Snowball got to go too and he absolutely loves it up there. He's so good in the car that you even forget he's along. He knows if he's naughty he won't get to go again. My brother and his family had their boxer named Bo with them too. Then we had sad news after we got home that Bo got hit on the highway and killed at my sister-in-law's folk's house. My brother and 3 nephews will really miss him, but I know Brooke is taking good care of him.
Gavin doesn't have to go back to school until next Monday. He is really taking advantage of that! He is still in bed! I love the breaks as much as he does! The rest of the week will fly by.
I have my little helper sitting on my lap helping me with this! I'm going to head out now because I'm getting tired of backing up and correcting! He hasn't had his 4 month check-up yet so I got on the scale this morning with him because everyone asks me how big he is and he weighed 16 1/2 lbs. I wish it were as easy as putting him down to lose another 16 lbs!!!
Thursday, December 13, 2007 10:33 AM CST Blake's baptism was very nice on Sunday. There were 10 babies baptised at church that day. He wanted to be looking around and seeing everyone and what was going on! We had our families over to the house after baptism. Gavin made Blake's cake. He wanted to! I'll put a picture on here.
Saturday was fine. I think I anticipate that a day is going to be worse than it really is. Brooke died in the morning, so I think that helps. Once I got throught the morning I was fine. Gavin had a couple cousins spend the night and my parents were here so Nick & I got to go out. We ate steak in honor of Brooke! That was her favorite food!
Our friend Lauren Johnson passed away on Saturday. I think there's something special about her and Brooke sharing their heavenly birthdays. Lauren had Wilm's when she was 4 and relapsed when she was 11. Lauren and Brooke were going through their treatments for relapse at the same time and that's when we got to know Lauren and her mom Jill. We spent a lot of time at the hospital together. In November, Lauren was just diagnosed with Leukemia. www.friendsoflauren.com
Even when I think I'm handling everything so great, sometimes I don't realize how it really does affect me. The other day Gavin asked me why I was crabby and I didn't even realize I was. Then Nick came home and asked me why I was crabby. They were good sports about it though! Lauren passing away bothered me way more than I thought it would.
I just know way too many kids that have died. I've been to 8 funerals in the last few years and the oldest one was my cousin's 15 year old son who died in a 4 wheeler accident. Gavin's friend Ashley just died from a car accident and the rest were kids with cancer. The thing is, I know many more kids than that that have passed away from cancer. The tragedy is that it just continues on and on and on. When Gavin goes up to the hospital to do his magic show, there are new kids and new families that we don't recognize. It's just so sad.
Enough about that.
Gavin sure was excited about a snow day the other day! So was I! I don't think you ever get past being excited about a snow day!
We still have a lot to do to get ready for Christmas. We are just using Brooke's tree this year. Gavin said that was fine. Otherwise we would have gotten a real one, too. Next year we'll get another tree. Then we'll probably only be able to decorate the top half!
Monday, December 3, 2007 1:03 PM CST I have to keep going through the same pictures to change them on here. It makes me so sad that I will never have a new picture of Brooke. Yes, I know she's in a better place and we will all be together again someday, BUT... I want her back here with me. I'm her mom and I'm not going to get to do all the mom/daughter things I wanted to do with her. Brooke was my holiday decorator, too. If she were here we'd probably be ready for Christmas. The only thing we have out is her white tree that has never been taken down. On the flip side, I feel so lucky and so blessed to have been her mother and I'm so glad we had her for at least the short while she was here.
I'm definitely more excited about Christmas this year with Blake. And each year will only be funner. Gavin & Blake are both doing great. They just spent the weekend with Grandpa & Grandma while Nick & I went to Las Vegas to go golfing with Nick's aunt & uncle, a cousin & her boyfriend. It rained Friday, but we golfed on Saturday. It was a lot of fun. Of course we checked out the strip, too.
Sunday we are having Blake baptised. Gavin & Brooke were baptised right away, but the weeks just keep flying by. Blake is 3 months now. Saturday it will be 2 years since Brooke died, which is just unbelievable to me. We'll have everyone over on Sunday after baptism, so it will be a nice weekend to have everyone around.
I scanned a couple baby pictures of Brooke & Gavin. I put them on the photo page with a picture of Blake. They all look even more alike in real life. They could have been triplets!
Saturday, November 10, 2007 4:48 PM CST Thank you for all the prayers for Gavin's friend Ashley. God has taken her home to be with him. I'm so sure Brooke was there for her and will be hanging out with Ashley until their families join them once again someday. I'm sure Brooke has introduced her to all the kids and all the dogs in heaven - whether Ashley likes dogs or not. But Ashely being the sweet thing that she is, probably humored her and let her do her thing.
Our hearts go out to Ashley's family at this difficult time. Knowing what they are going through and planning funeral arrangements for their precious 12 year old daughter. Something no one should ever have to do. I know Brooke's friends have been praying for them and I thank you for that. They continue to need our prayers and support in these long days and years to come now. Their lives will never be the same.
You can leave them messages of support at www.caringbridge.org and type in AshleyWooden. Thank you.
Monday, November 5, 2007 10:30 PM CST Calling all prayer warriors. Please pray for one of Gavin's friends who was in a very bad car accident this weekend. Her name is Ashley and Gavin has gone to school with her since kindergarten. From what I understand, she is in a coma at Creighton in the pediatric ICU. She suffers from a severe head injury and is not breathing on her own, the last update I had. She also has a 5 year old brother still in the hospital. They have just started a web site for her but haven't put any updates on there yet, as of this update. To leave them a message of support, you can go to www.caringbridge.org and then type in the name AshleyWooden. You can tell them Brooke & Gavin sent you.
I wish I didn't have something so bad to report. As far as our homefront goes, everyone is doing good. Blake was 2 months on Halloween! Hard to believe. It's funny how a new baby can just fit right in like he's been here forever! He's such a blessing and a joy to have. We are really appreciating him.
This is deer season, so I won't be seeing much of Gavin & Nick this month. I probably won't go to the cabin with them. All I would probably do is cook and clean! Maybe Blake & I will get some Christmas shopping done!
Please say extra prayers for Ashley.
Monday, October 22, 2007 4:19 PM CDT Oct. 25 *NEW PHOTOS*
~* "We don't deny that the wind is in the air, or that the magnetism of the earth keeps us grounded, or that the rays of light brighten the day. We don't see it, but we know it's there." (Vicki Baines) *~
HAPPY HALLOWEEN! I don't have much to update, which I have learned to really appreciate. When there's not much going on that means things are pretty normal. We are busy and having a lot of fun with Blake. Gavin is having fun learning new magic tricks. School is going good for Gavin.
My sister and her family were here this past weekend. The adults in our family all went out to celebrate my parents' 40th wedding anniversary that was this year. Saturday, my sister and her husband took their two oldest kids to their first Husker game in Lincoln. I think they've been to one in Texas, but to go to a game in Lincoln is quite the experience. We tailgated and it was a beautiful day.
Gavin is so excited to go to the Hannah Montana concert tomorrow night here in Omaha. He is going with some cousins.
There is a fundraiser coming up for a great local organization. Angels Among Us helps families with children pay some of their bills that they can't pay. You can get more info by checking out their web site at www.myangelsamongus.org. I have a link below. I was looking at the site more the other day and last year they helped pay over $85,000 in bills.
Wednesday, September 26, 2007 1:21 PM CDT I love this picture of Brooke cheering after a Husker game at our tailgating spot. This would have been in 2004. Her hair was just growing back. You should have seen people look at her. I know most of them were thinking "Why are those parents letting that boy wear a cheerleading outfit?"! Look at her eyes. They're so beautiful. I miss her so bad.
Our friend Tanner just passed away and it has been just like reliving a nightmare knowing what this poor family is going through. It was so hard telling Gavin that Tanner died. He just loved her. He even told me that she reminded him of Brooke. Please pray for her family as they now have to try to learn how to go on. Learning how to live a completely new life. A life without their spunky girl, but also a life without the purpose they had for the last 4 years. It's not easy. It takes a LONG time to try to readjust. We still are. It's hard to do things as a family because someone is missing. It just plain sucks.
Tanner's service was beautiful. The one thing the minister said that sticks in my mind is "Those who believe grieve differently than those who do not." That is so true and I am so thankful that I believe. We will see our girls again someday and if I didn't believe that with all my heart, I don't know how anyone could go on. Please pray for Tanner's family that their belief remain strong and grow stronger every day. Please pray for their peace and strength. You can read about Tanner's story at www.tannerville.com. She is an amazing person. These children go through more in their short lives than most of us will in 80 years.
We were pleasantly surprised by some special visitors on Sunday. Hannah and Abby came by the house to see our new Blake. We didn't know Abby was coming to town until they called Sat. night! What a treat to get to see them! I put some new pictures in the photo album. Abby's mom Kristi, has a great entry on Abby's web site right now. You can visit Abby at www.caringbridge.org/visit/abbybridgewater.
Monday, September 24, 2007 9:22 PM CDT Today we attended the funeral for our friend Tanner. She was almost 9 years old and fought the toughest fight I've ever seen. Heaven will definitely not be the same with Tanner & Brooke there together. Tanner reminds our family of Brooke in so many ways. Gavin just thought the world of Tanner. Please pray for her family as they start their own new fight of learning how to live without their spunky girl.
Sunday, September 2, 2007 5:16 PM CDT IT'S A BOY!!!!
Blake Alan Brion
9 lbs. 11.5 oz. 21 in. long
Baby Blake was born Friday, Aug. 31 at 1:03pm. He is just the sweetest thing ever! We just can't get enough of him. Especially Gavin. I told Gavin it is a good thing he'll be in school so I can hold him during the day! I'm not sure if the newness will wear off or not. I have a feeling it won't!
Every day when I'd get Gavin up for school he'd ask me if I was having the baby that day, so Friday when he asked me and I said "I think so" his eyes got SO big and he just jumped right out of bed. I don't know how much he got out of school Friday, but I didn't think I'd have the baby yet before he got out.
Nick got up Friday and was suppose to go golfing in Lincoln all day. When he left I told him I'd had a few contrations and he might not be able to stay there all day. Well, I almost called him to come home before he even got there, but decided to wait a little longer. I didn't get to wait too long though and had to call him to come home. We got to the hospital at 11:00 and the baby was born at 1:00. I thought maybe I'd try it without the epidural because I never had one before. The Dr. and nurse kept saying, "This is like the old days!" "Boy, this brings back memories!" I was thinking I must be an idiot! There must not be very many births without epidurals. But by the time I really wanted it so bad, I knew it would take them a while to get it to me and we'd have a baby by then. So, OUCH! I had no idea he'd be so big. Gavin and Brooke were 7 lb. 14 oz. and 7 lb. 12 oz., so I thought this baby would be the same, maybe just a bit bigger beings he was past my due date. He sure is a great baby so far.
He looks just like Gavin and Brooke when they were born. We didn't have a digital camera back then, but maybe I can scan some old pictures on so you can see!
We are all doing very good and just enjoying our newest addition! Thanks for checking on us!
Monday, August 20, 2007 3:09 PM CDT Thursday August 30 - Still no baby and no inclination that it's coming anytime soon. I told Nick it's a good thing the football game Sat. is on TV! I think he's getting a little worried it will be Sat.!
Monday August 27 - Still no baby in case anyone was wondering. It seems to be in no hurry. Gavin is almost more anxious than me. Nick will be really thrilled if it decides to come on the first home Husker football game Sat.! (We always go tailgating!) I think I'm too ready - the house is clean and the laundry caught up! I've already passed up 4 birthday's in the last 4 days! Gavin's is Sept. 5th, so he would like it to be then, but I hope we don't have to wait that long!
Nothing new to report around here - yet! We're starting to get a little anxious for this new baby. The due date is Aug. 29. We're anxious to find out what it is. Nick & Gavin have a girl's name picked out but we don't have a boys name yet. They said they get to name it because it was my choice not to find out the sex at the ultrasound. They're very picky though. I like lots of names but they always say no to them.
I'm reading a new book I just bought that tells a lot of stories about near death experiences people have had or other stories about what people who are dying have said about seeing and talking to someone who has been gone for a long time. It's been a while since I've read one of these books and it makes me feel SO much better. It just helps strengthen my belief that Brooke really is around and we will be seeing her again soon. I used to think of life as so long, but now realize how short it really is in the whole big scheme of things. We've got Gavin and this new baby coming, so I am not ready to go anywhere any time soon, but just can't wait to see Brooke again. I wish I could dream about her.
Gavin starts school on Wednesday, so today we went to lunch with Nick. Gavin's trying to make homeade smoke bombs right now. Maybe it will be a good thing when school starts! He thought of a new magic trick where he ties himself up and wanted to hang from a tree and try to get loose. I told him he better practice in the house - close to the ground. So he tied himself to the banister going up the stairs and it pulled tight and he couldn't get out!
Gavin's little phase of not wanting to be seen with Mom didn't last very long, although I know it will be coming back soon enough! I've been getting tons of hugs and kisses. He's been going on walks with me at night. He's hoping it will send me into labor!
It's hard to believe Brooke would be going into 4th grade this year. We miss her SO, SO much. What I wouldn't do for one more hug or one more kiss. There's that song from Diamond Rio called "One More Day" and it makes me cry every time I hear it. I don't know if I could even handle just one more day knowing we'd have to give her up again.
Then today I heard the song from Garth Brooks about The Dance. I know a lot of songs are meant to be love songs, but I can't believe how much they also relate to losing a loved one.
The Dance
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you'd ever say goodbye
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance
That's what I try to tell people, too. We wouldn't have traded our 7 1/2 years with Brooke for anything. I would rather have her for a short time than to have never had her at all. We still have her and we'll be with her forever someday.
Wednesday, August 1, 2007 7:38 PM CDT {Saturday - I just wanted to add something. Last night while I was in bed I remembered a time at the hospital with Brooke and Brooke told me, "I just can't help it." and I asked her "Can't help what?" Brooke said "I just can't help it. I just love Gavin SO much." I wrote that down somewhere so I wouldn't forget it, but had and it just came to me again last night. Thought I'd share that.}
I can't believe it is August and school will be just around the corner. Gavin starts football practice tomorrow and we had to go get some new shoes for that and school today. We need to check on what school supplies we need, too. I can only get so much done in a day though! In my mind I want to get so much done, but I just don't move very fast anymore and I can't bend over very well!
We had the pleasure of spending time with the Lambert's these last couple days. Gavin always has a ball playing with the girls. He's used to having a sister anyway and someone to play with, so it was a lot of fun having them around. They built quite the fort to sleep under and it reminded me of when Gavin and Brooke would do that all the time.
Molly was in town for some testing and they got good results back from those! Yeah! The spot on her lung ended up being a common lung fungal infection. Her bone marrow aspirate came back clean, too. She did have to spend the night in the hospital instead of just outpatient testing like originally planned. That was because of some bleeding into her lung from the needle biopsy. We are so happy for them all for the good results! What a relief!
Not much else here. Gavin actually held my hand in Scheel's today! He goes back and forth!
Thursday, July 26, 2007 8:51 PM CDT This has definitely been a better week. I still have some crying spurts where I just miss Brooke so bad. I can't wait until my hormones are back to normal.
Gavin & I went to see our friend Tanner and her family the other day. She missed the magic show he did at the hospital last month and we kept saying we'd come over and he'd do it for her. We finally made it! Tanner was talking about wanting to do a lemonade stand to make money for the kids at the hospital so I told her how much Gavin loved to do that. Gavin and Brooke used to do that all the time at the end of the driveway. So today he went with Tanner to HyVee to help with it. I think it went well. I don't have any pictures from it because I got there late. Maybe Marjorie will put some on Tanner's site (www.tannerville.com) and you can check there or I'll get one to put on here.
Gavin made a new friend in Tanner's cousin Zach and ended up spending the afternoon at his house and now Zach is spending the night here! Their birthdays are only a month apart and they are having a lot of fun.
In one way I can't wait for the cooler weather and fall and having the baby be here. And then again, summer always goes so fast anyway that I hate to have it go any faster. I love having Gavin home. He's such a great kid, but is just starting to be embarrassed by me! The other day we were at the mall and I asked him if he wanted to go into American Eagle, but he didn't want to go in with me. What if one of his friends was there? I told him his friends know me anyway, and he said not all of them do! I didn't know if it was because I was pregnant or just because I am Mom! (I think it's a bit of both. He asked me a while ago when we could go to FunPlex and then turned around and said he'd just wait until after I had the baby and I got my shape back! - We did get to go with the Bridgewaters and Knudsen's and had a blast and he didn't say anything then!) So I waited out on the bench while he went in to the store. He wasn't in there very long. And if he would have found something he wanted I would have had to go in to pay for it! Then I found out it would be ok if Dad took him because Dad is cool! What a deal! But then this morning when I woke him up he asked me for a hug and I feel all better now!
Thursday, July 19, 2007 10:48 AM CDT It's been a tough week knowing all Brooke's friends from the hospital were at camp and she wasn't there with them like I think she should be. I checked the pictures to see her friends, but it's hard and it just breaks my heart. I've been crabby this week and I know that is probably why. It's just not right. I love to see all her friends, but it's hard to watch them grow up. Of course, some days are easier than others and I think my hormones right now are pretty out of control! And the heat and humidity are dragging me down!
I've put a story on here that I got from Nathaniel Miller's carepage. (I copied it!) His sister Emma got to go to camp for the first time this year! It looks like she had fun! This is a story for all the mom's. You know who you are!:
As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.
Thursday, July 5, 2007 10:02 PM CDT I'm going to put some photos in the album, too. It's hard not to get them to glare when I take a picture of it because it is all polished. Some have asked me how to get there so here are the directions if you'd like to visit: Resurrection Cemetery is just on the NW corner of 78th & Center. She is in section B and you will see it!
The monument was designed by Gavin. From the minute she died, he started drawing sketches of it and I told him he could help us design it. I probably never would have picked a heart, but I love it. The verse on the bottom is "Trust in the Lord with All Your Heart" Proverbs 3:5. Brooke bought a plaque in a store that says that just days before she died. She picked it out all by herself, so we just had to put that on there!
In the etching of Brooke with all her favorite animals from her life, all the names of our family are hidden in there. You'll have to try to find them. It wasn't as hard as I thought. There's a wolf in the constellation of the stars because Brooke loved wolves. The other animals are Grandpa's horse Buck, the bunny we had - Thumper, the hamsters we had - Rainbow & Bitey and of course Snowball and Little Tiger. There is also the rainbow picture she drew with an angel and dog under it and an angel and cat on top of it. The angels are Gavin & Brooke - Gavin told me.
On the back we put a painting she did with the dragonflies in it and Snowball, Rowdy, Coco, & Thumper. We put the dragonfly story on there and another picture of Brooke & Snowball. It is large, so it will be for Nick & I, too. If anyone gets a chance to see it, let me know. It makes me feel good to know other people have enjoyed it.
Oh yeah, the flowers I put in the vases are flowers Brooke had bought at Michaels one time in the winter and they are spring flowers so they were like REALLY cheap! She was going to use them to decorate her room, but we had never really done anything with them. I like that she picked them out.
Thursday, June 21, 2007 3:51 PM CDT I was going to update, but then I checked sites first and I just don't have much to say right now. Please pray for Tanner as she and her family are going through what we went through a year and a half ago. I've been watching Tanner as if someone pushed replay on my life, but was hoping it wouldn't come to this. This is the most amazing and fiesty little girl and she reminds us SO much of Brooke. You can visit her at www.tannerville.com.
Gavin did Magic Monday at clinic on Monday at Children's. So many new faces. I hadn't been there for a long time. It was nice to see Paige & her mom and we got to meet Blake who we had only met online before.
We continue to stay busy. We had a new nephew/cousin born Tues. so his sisters spent the night and Gavin had fun playing with them all day Wed. Noah Harrison Brion was born to Stan & Gina.
Summer is not the same without Brooke. Gavin even said so the other day. We lost Tiger for a couple days and thought he was gone forever and of course it was my fault because I had let him out. Boy were we glad to see him show up again! He had stuff in his whiskers so we think he must have had himself in a little pickle somewhere. Then we took Snowball to the groomers and they didn't shave him, but cut all his hair really short. It barely looks like him. When we picked him up, Gavin said, "Brooke would be really mad!" It'll grow back!
Friday, June 8, 2007 5:36 PM CDT Update Mon., June 11
New photos in photo album.
The walk was a huge success Sat. raising $100,000, double what it raised last year. Thank you to everyone who walked with us, donated, or had us in their thoughts. Brooke's Barkers raised $1600 for the Wilm's Tumor Initiative. I don't know a total yet from the teams that contributed to that. I will let you know when I find out.
We continued with a very busy day and it was like a birthday party all day. Some cousins came to our house after the walk along with the Lamberts. We ordered pizza and the kids had water fights all day. We then took balloons to the cemetery and also made it to Build-A-Bear for some cousins to build a bear for their birthdays that are right around Brooke's. Then we even had Chinese for supper. We were just taking the day as it came - not really planned out, but when I look back on it now as I type this out, it is almost like Brooke had it all planned out with everything she would have loved. It was a very busy day ~ emotionally and physically draining ~ but good! Please keep Molly in your prayers as she has some testing done tomorrow. Also, Brooke is up to more mischief as she continues sending babies this way! I will let you know soon enough who is next!
I will keep this short & sweet. Sorry I didn't update sooner with more aobut the walk. We were on vacation to Hilton Head and Savannah for a week and just got home Tues. night, and I've been without internet service since Wed. afternoon. I just finally got the time to call to figure out what was wrong. We have been SO busy playing catch up!
The walk is tomorrow morning, 8-10 at Village Point Shopping Center. When you get there you do NOT need to register, only team captains need to register. Find me if you have any money you raised and I will turn it in with our team. Thank you for all your fundraising efforts and participating in this walk with us. I will be somewhere around the registration table and I will be there early. I will have my Brooke's Barkers shirt on. If you have one from last year or any other dog shirt, you could wear that, too!
Yesterday they got Brooke's headstone in. It is in Resurrection Cemetery on 78th and Center St. and she is in section B. Thank you Matthew & Abby for the flowers you already left there. We went up yesterday morning to watch for a bit. The 3 main big pieces had to be lowered in with a crane which took them from the back of the truck and over to the spot where they belonged. We used a company in Fairbury and had an artist from Alabama do an etch design on it and they did a wonderful job. I told Roger from the monument place that it was so nice it would be in for Brooke's birthday, and he stepped back to look - he hadn't even noticed it was Sat.
We hardly went before, but now I think we will go often. The rainbow on the front and the one in the back are drawings of Brooke's. The rainbow picture she drew when we got home from her Make-A-Wish trip and she never finished it - it was to send in for their contest to make it into a card. It was drawn before we ever even said we would get a cat. It is Gavin on top with a cat and Brooke underneath with Snowball. They are all angels. The cat even has stripes like Tiger. The picture on the back she painted at Candlelighter's one night. The middle dog is Snowball and the 2 other dogs are Rowdy and Coco - Christy Hogan's dogs! The bunny on the end (hard to see it's a bunny) is Thumper, the bunny we used to have. The dragonfly story was read by the priest at her memorial service. She had never heard the story before, but it goes perfectly with the picture.
The heart on front is full of all the animal's Brooke loved. The horse in the background is Grandpa's horse, Buck. The bunny is Thumper, the 2 hamsters are Rainbow & Bitey! (We used to have them, too!) Of course Snowball & Little Tiger are on there and Brooke loved wolves, so there is a wolf in the constellation of the stars. All the names from our family are hidden in the picture somewhere. You'll have to see if you can find them!
I will post pictures one of these days. I would like to give people a chance to see it in person before I post pictures. I think it's cooler that way!
Tuesday, May 22, 2007 4:56 PM CDT (May 30) I see there were some visitors to Brooke's grave over Memorial Day. There were new flowers there - it made me cry. You tend to think other people go on with their lives and forget, yet it is so fresh in our minds and we feel like it was just yesterday that we lost Brooke. So it really means a lot to us to know people still think about her and care. You'll never know how much! I pray no one would have to know what this feels like, especially the people we love and care about.
(May 24) I just was thinking about this being Memorial Day Weekend. Brooke's headstone still isn't in place, but we were SO close to having it in for this weekend. I believe they are just waiting on the porcelain photos we chose to put on it. I will definitely update when it is in. Gavin & I sat out a dog statue we used last year at her place. Just in case anyone was interested, she is in Resurrection at 78th and Center in section B. You will see the dog statue!
I always laugh when people talk about pennies from heaven and that that's suppose to be a sign from a loved one. Well, ever since Brooke has been gone I find all kinds of coins - usually nickels, dimes & mostly quarters! I figure that is just like Brooke! Well, I went out to plant some flowers the other morning and sure enough, what did I find? A quarter! I finally had another dream with Brooke in it last night. It's been so long. We were looking all over for her and couldn't find her anywhere and were so worried. Then she came into the house to get something and left again. She couldn't figure out why we were so worried about her - she was just across the street playing with the neighbor girl! And for some reason, when I woke up, I did feel better. It's like she was just saying not to worry about her, she's just having fun and playing with her friends!
Please join us for the Cure Search Milestones Walk on June 9 from 8-10am at Village Pointe Shopping Center! There are many ways you can participate. You can join our team and be a team member and try to raise some funds to donate to CureSearch, you can just come and walk with us or if you are unable to make it that day and would like to make a donation, you can donate online or mail it to me. Please have any checks made out to CureSearch - Wilm's Initiative. The money raised by our team is going to go for a new study on Wilm's relapse. If you raise some money for our team, try to get it to me by June 8 so I can turn it all in together the morning of the walk. Too bad they didn't have this before Brooke relapsed. There is a link below for the Milestone's website and you can look for team Brooke's Barkers! If you have a t-shirt from last year, we are going to wear those again. If you didn't get one last year, but would like one, I have a few extras left from last year in a variety of sizes.
In the U.S. almost 3000 children die from cancer each year.
Cancer is the number one disease killer of children.
In the past 20 years only one new cancer drug has been approved for pediatric use.
Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.
The government recently cut the budget for Childhood Cancer Research.
14,000 children will be diagnosed this year with cancer.
Currently there is between 30-40,000 children being treated for cancer in the U.S.
As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year.
We attended a fundraiser spaghetti feed for Angels Among Us Sunday night. Gavin loves to see all the kids again that we've gotten to know from the hospital. He especially loves to see Tanner, a little girl who is still fighting. I'm pretty sure deep down inside, she is just like having Brooke around to him. He absolutely loves her! He doesn't usually say much anymore, but Monday morning he was trying to eat breakfast before school and I noticed he was fighting back the tears and trying not to cry. Then he said, "This summer's going to be really hard without Brooke." I said I know and we both cried. It is starting to sink in more and more all the time. We are coming out of that fog you don't even realize you are in until you start coming out of it. I think being around Tanner reminded him of what it used to be like. You can visit Tanner at www.tannerville.com. She needs your prayers right now along with so many other families we know.
Monday, May 7, 2007 9:44 AM CDT "Tomorrow morning," the surgeon began, "I'll open up your heart..."
"You'll find Jesus there," the boy interrupted. The surgeon looked up, annoyed, "I'll cut your heart open," he continued, "to see how much damage has been done..." "but when you open up my heart, you'll find Jesus in there," said the boy.
The surgeon looked to the parents, who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I"ll plan what to do next."
"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."
The surgeon had had enough. "I'll tell you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."
"You'll find Jesus there too. He lives there."
The surgeon left. The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: painkillers and bed rest. Prognosis: here he paused, "death within one year." He stopped the recorder, but there was more to be said. "Why?" he asked aloud. "Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"
The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock and will forever be. Here, in My flock he will feel no pain, and will be comforted as you cannot imaginge. His parents will one day join him here, and they will know peace, and My flock will continue to grow."
The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why?"
The Lord answered, "The boy, My lamb, shall return to My flock, for he has done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb." The surgeon wept...
The surgeon sat beside the boy's bed; the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?"
"Yes," said the surgeon. "What did you find?" asked the boy. "I found Jesus there," said the surgeon.
~Author Unknown~
I got this in an e-mail the other day and have read this story before. Maybe I needed to hear it again. I wanted to share it with anyone who maybe hasn't heard it before.
I want to thank everyone who has made a donation to CureSearch for our Brooke's Barkers team and the walk that is coming up on June 9. We need more team members and would love to have you join us! It is from 8 to 10 am on June 9 at Village Point Shopping Center. You can call or e-mail me or join or donate online. I have a link posted below.
We also have good news about where our funds are going. A couple families I know who have also been affected by Wilm's tumors, have helped start a new Wilm's Tumor Initiative that will be researching Wilm's relapse. Dr. Dome is the head of this and I believe he is at St. Jude's. I think he is the Dr. that Brooke's oncologist always consulted with. CureSearch has given us the ok to designate the funds from our team to go to that study! Any other team that wants to, can also do the same, so there will be quite a few teams at the walk who are giving to this cause. It's so nice to know where the money is actually going and I want you all to know that you ARE making a difference in someone's life! THANK YOU!!!
Tuesday, April 24, 2007 3:01 PM CDT I didn't know what to update, other than about the walk coming up. But putting this picture of Brooke with the goat on here got me thinking about what a better mother Brooke made me. White pants at the zoo? Who cares?!? There would have been a day I probably would have. But if that's what your child's favorite color is and that's what they want to wear, then why not? Brooke taught me how to let her be herself, instead of someone I tried to make her be. It just made me think of a mom I saw in a store the other day and she and her little girl were trying to pick out a cross for the wall. The mom asked the little girl which one she wanted and she showed her mom which one she wanted. The mom looked at it and said she didn't like that one - try to find a different one. Now, I don't know what the cross was for, but if it was for the little girl, I think she should have got to pick the one she liked! I kept my mouth shut, but wanted to say really badly that I really liked that one the little girl picked out! I'm not talking about letting your children be the boss, but I am saying that I think it is very important to let their personalities be who they are.
Another thing that happened the other day, I was at a meeting and met a couple new people I hadn't met before. After some introductions and what do you do's, one woman said she works for a hospital for the oncology department, the children's cancer part, she said. Then said, but she was lucky because it was more of an office job and she doesn't really work with the kids. I then did tell them I had lost a daughter to childhood cancer. What I really wish I had said was that NO, she would be lucky if she got to work directly with the kids. Every one of those kids has something special - something no one else has. But people are still scared of it. The kids we know from the hospital are the most amazing children in the world. Anyone who gets to know these kids falls in love with them and can see there is something different about them. Also, they have a wisdom about them that is unexplainable.
Things are really normal around here which is very boring and very good! I had my ultrasound a couple weeks ago and everything looked good on that. I was kind of nervous going into it. I don't have that naivety I had before. I know how one test can change your whole life. We don't know what the sex of the baby is. At least I don't anyway. Nick and Gavin wanted to know and while the tech was out of the room, they looked at her computer and say that it said what the sex is. I don't want to know though, so I don't know if they are teasing me or not. I'll be very upset if I find out before the baby is born. Gavin and Brooke were both surprises and there is nothing better. It's the only true surprise in the whole world. Nobody should know what it is except God (and Brooke I guess!).
Please join us for the walk coming up on June 9 from 8am - 10am (Brooke's birthday - she would be 9 that day). It is to raise money for the CureSearch National Childhood Cancer Foundation. CureSearch is dedicated to raising private funds for childhood cancer research for the Children's Oncology Group (COG).
*The oncology Drs. at Children's Omaha and UNMC are part of this group.
*Today, at least 3/4 of children with cancer participate in clinical trials.
*The government has once again decreased funding for childhood cancer.
*As a result of federal cuts, the COG has been faced with the difficult decision to postpone or cancel 20 new studies and to decrease enrollment in clinical trials by more than 400 children next year.
*One in every 330 Americans will develop cancer befor the age 20. At diagnosis, in many children, the disease has already spread throughout the body, making clinical trals vital to finding a cure and extending life.
*It ALWAYS happens to someone else... until that someone is YOU and YOUR CHILD.
Joining our team is easy. Just go to www.milestoneswalk.org to sign up on the Brooke's Barkers team or you can call me at 965-9280 or e-mail me at nbrion@cox.net. You are just asked to raise as little or as much money as you can that I will turn in to CureSearch that day with our team. We will then spend a couple fun hours out at Village Point Shopping Center where we will do a short walk and take part in some other fun activities that will be going on. This is only the 2nd year for this walk and there are only 2 in the entire country. Last year the walk in Omaha raised over $50,000! Thank you everyone! Hopefully the walk will grow to include other communities around the country.
I was thinking we could just wear our shirts we had for last year unless enough people want to do something different. Some of the kids' shirts will probably be too small and I thought they could wear any dog shirt they might have. Let me know if you have any ideas on this. I have a few left over from last year and I can check to see what sizes if someone is interested. Or I could probably order new ones that are the same if that is of any interest to anyone.
If you register for the walk online, it can make the fundraising very simple. (I'll try to put a link below.) You can e-mail your friends and family the event and they can donate directly online if they are interested in supporting us. Sorry this entry ended up getting so long. We hope you can all join us for the walk!
Tuesday, March 27, 2007 1:17 PM CDT I wish more people could have seen Brooke and Kristy together - in action. They were quite a pair and I would definitely call them "soul twins". Nick and I always say we know just what Brooke would be like if she would have had the chance - just like Kristy. Kristy always put a smile on Brooke's face and gave her new found energy even when she was so down and in the hospital. There are new pictures in the photo album from the wedding. (This beautiful bride showed us her "something blue" - it was her Brooke band wrapped around the stem of her bouquet! I have a good picture, but I'm trying to learn on my new camera how to resize from the high quality to the image size I need for on here. Ugh! I wish I could just sit down to the computer and do whatever I wanted!)
Gavin has spring break next weekend, but we didn't plan anything too exciting to do. We are going to KC for the baptism of our new little niece there - Nick's brother's new baby girl. My sister also had her baby boy, but I think I'll wait and Gavin & I will go see them in Oklahoma when school is out. We'll go to the cabin a couple days and then the guys will go up there for youth turkey season. Gavin's turkey from last year is still in the freezer! Then it will be Easter. I have a ton of Easter decorations, but haven't felt like getting them out. I forgot how emotional pregnancy makes you and when you're grieving the loss of one child and anticipating a new one at the same time it can be very overwhelming some days.
I've been feeling good. I'm starting to not be so tired all the time. We're in the process of moving Gavin to the spare bedroom so the baby can have his room which is right next to ours. Then Gavin will be at the other end of the hall and have his bathroom close down there. It will be better as he gets older, I think he will like having his own end of the hallway by Brooke's room. Brooke's room is still the same. It will be a play room. Gavin has his playstation in there and goes in there to play that.
I'll have more information about the walk coming up on June 9 (Brooke's birthday) coming soon. If you would like to walk with our team that morning from 8-10am at Village Point Mall, we would love it! It is a fundraiser and all money raised will go to Childhood Cancer Research. More children die from childhood cancer than from all other childhood diseases combined (diabetes, aids, cystic fibrosis, etc...). There hasn't been a new drug to treat childhood cancer in over 20 years and they are cutting the funding this year. I just don't get it.
Thursday, March 1, 2007 9:12 PM CST Snow Day! Snow Day! We had a snow day today! I love them just as much as the kids! It's an excuse not to go anywhere! Gavin played outside alot with the neighbor and the neighbor boy is spending the night tonight because they already announced there will be NO school tomorrow! I haven't heard an official total from the news, but my neighbor said she measured 15 inches all over on her driveway with her yard stick. The boys made a maze for Snowball in the backyard. It is very deep and goes all around the back yard. Watching them made me think of when it snowed so much when Brooke was so very sick and she didn't want anyone to touch the back yard because it was all hers. They could mess up the front, but they had to save the back for her. She never made it out there. I've been missing her so bad lately. There's just nothing you can do about it. I wish she were here to play in it. But I know heaven has snow too and that she probably has her own team of sled dogs pulling her all over the place! That was the one thing she still wanted to do that we never got to take her to do. If we would have known earlier that she wanted to do that or that she was going to get terminal, we would have definitely gone and done that.
We had fun in Telluride. We stayed with Nick's cousin and he has 2 boys who are awesome skiiers. They are 11 and 6. Gavin went off to the blacks with Tate who is 11. We couldn't even watch him, because I wouldn't go in those areas! The blues are enough for me and I prefer the greens! We had great snow and weather while we were there. Didn't see anybody recognizably famous, but did see the Secretery of the Treasury. If you look at your dollar bills you will see his signature on there! I think his name is John Snow. I don't actually remember for sure. Oh yeah, I wanted to tell you the sign we had from Brooke. You know how I said she wanted to go ride with the sled dogs. Last year when we were leaving Chuck's house one day, laying at the bottom of the front steps was this beautiful Husky dog. She just layed there and looked at us and we had to literally step over her. We petted her and she was so nice. We just knew it was Brooke letting us know she was there with us. This year I was in the kitchen one morning and Nick was going over to open the patio door and I looked over and there was the very same husky up on the back deck looking in the window at us. She just stayed there and layed down and looked us in the eyes. It brought tears to my eyes because I just knew it was Brooke letting us know again that she was there. This time I got a picture of her. Maybe I'll get it on here in a couple days. Sometimes things just remind you of Brooke and then sometimes you just almost get shivers and you just "know" it's more than just a reminder. It's hard to explain.
Don't forget about the blood drive coming up on March 24 at Picotte elementery school. BE BRAVE LIKE BROOKE! Save a life! Call Jill to schedule an appointment at 493-3655.
Coming up on June 9 is going to be the 2nd Milestones Walk for Childhood Cancer. We are going to put together a team again and walk in memory of Brooke. That would have been her golden birthday - the day she would have been 9 on the 9th. The walk is from 8-10am at Village Point mall. Mark your calendars! I will have more info on that later.
We have some exciting news to share with everyone. We are going to be getting a new baby at our house the end of August. I am expecting and Gavin is beyond excited! We are too but he just is the best brother in the world, we already know that and know he will continue to be. I've been feeling good, just extremely tired, but that seems to be getting a little better. So if you see me, I'm not just getting fatter, I have a reason! It's scary knowing we are not immune to the things that can go wrong, but we also know it is worth it. We are so glad we had Brooke and would never have traded her for anything in the whole world. We just wish we could have had her longer! I have a feeling she has been up to a lot of mischief up there in heaven. Ever since she died, you wouldn't believe all the new baby cousins we are getting on both sides of the family and from families that thought they were done! This year we are getting 3 new babies on Nick's side and 2 on mine! Christmas should be quite interesting this year! Enough babies to go around for everyone to hold! I just think it's kind of funny!
Saturday, February 3, 2007 11:18 AM CST BRRR! It's COLD outside! 0 degrees right now and not warming up anytime soon. We did go snowmobiling in Wyoming a few weeks ago and that was a blast. We would love to get back out there again. The 1st day we were out, the high was 12! The 2nd day I would be surprised if it got to 0. It was -7 when we got started in the morning and when we loaded back up, it was-5! I can't imagine how fun it would be if it were warmer out!!! The trails were beautiful. We would start at one point and then we went a little over 30 miles to another town and went in the lodge to get something to eat and warm up a while before heading back. I just love being outside and out of the city. It feels like heaven is just so much closer when you feel like you're out in nature and in it's beauty. Like when we go to the cabin. I love the sunsets when we are there.
This morning we were talking about when Gavin and Brooke would walk home from school and Snowball would sit on the deck looking at the fence, just waiting for the kids to walk through that gate. I don't know who was more excited - Snowball or Brooke! I love those memories, but they make me miss her SO, SO bad. It's the bad memories of her being sick that make me glad for her that she doesn't have to endure that anymore. But now that's what we are doing - enduring. Getting through. Sometimes it seems better, and then there are times that your heart just feels so heavy you don't even want to drag it to the store. But all-in-all, things are good. Nobody said it was going to be easy.
There is another BE BRAVE LIKE BROOKE BLOOD DRIVE coming up on March 24th at Picotte Elementary in the morning. If you would like to give the gift of life and schedule an appointment, you can call Jill Bretsen at 493-3655. It's such an easy way to give SO much. I could never get over how much blood product the kids at clinic and in the hospital would use. And that's only one clinic. Brooke hated getting blood and didn't want to see it, so the nurses would cover the bag and IV pole up with a blanket and cover the tubing with blood in it for her. I remember one time when we were in clinic and there were about 4 other kids getting blood at the same time. I had to ask them all if we could cover up their bags of blood. It looked like Halloween with a room full of ghosts floating around on those IV poles!
Nick, Gavin & I are headed to Telluride after Valentine's Day to do some skiing and snowboarding. I'm the skiier and the guys snowboard. I have no desire to do that, but I love to ski. I think part of it is being out in the beautiful mountains and feeling close to the heavens! It's so peaceful. Telluride isn't a very busy place and that's what we really like about that. I know a lot of the famous people like to go to Telluride now, too, but we always forget to look for them! They just look like everybody else to me unless it's someone that would really stand out! Maybe we'll see Tom & Katie! Ha! Ha! I'll let you know!
Tuesday, Jan. 9, 2007 3:50pm Happy 2007! It's hard to think that Brooke wasn't here at all in 2006. Wow, what a thought! We have busied ourselves right through the holidays and into the new year. Gavin went back to school yesterday and things are starting to feel a little more like normal all the time. Normal without Brooke is trying to get used to not having her giggles, her stubborness and all her energy around. Boy did she exert energy. Like 70 years worth in 7.
We visited lots of relatives over the holidays and then went to Vegas during the week between Christmas and New Year. Gavin got to go too because other cousins went that could also babysit. We lost a little money and had fun doing other things, too! I made Nick go to the Celine Dion show with me! His Aunt Becky also went with us. I've always wanted to see her and it was a great show. Nick didn't say too much about it either way! We took Gavin to a magic show. He LOVES magic. He volunteered to go on stage and the magician picked him. He was in his own little heaven! He did a great job and even got a big kiss from one of the show girls there! I'll put pictures in the photo album.
Last week we got to spend some time with Abby Bridgewater and Kristi and Emma before they moved to Colorado. One day they took Gavin to clinic with them while I was at a class all day. (I'm getting my realtor's license.) He took some of his magic with him and put on a little show for the kids at clinic! Kristi said he did an excellent job. I wish I could have seen him! I would have been too shy at that age to get up in front of everyone to do that, so I am very proud of him when he does those things!
This weekend we are going to try to head to Wyoming and take the snowmobiles! That's the plan anyway! I know they have lots of snow there, I just hope it's not too windy.
Not much else to report, which is always a good thing. Thanks for keeping us in your prayers! We do appreciate it so much!
Friday, December 22, 2006 7:59 PM CST MERRY CHRISTMAS!
For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life. John 3:16
We know in our hearts that Brooke will be celebrating a wonderful Christmas in Heaven. We would much prefer her here with us, but not if she were sick. That was no good. Not a life for a child. She held her head up high though and set great examples for us all to learn from. I could only hope that I could be so courageous and have as much faith as Brooke if I were in a similar situation. I'm an adult though, so I'm sure I would be complaining!
I'll never forget last year when Santa came to visit and when he left, I noticed that Brooke was holding his gloves. He left them for her to take care of. She held on tight to those gloves those last couple days of her life. She even slept with them in her hands. She sure was going to take care of them and make sure nothing happened to them! Now they are on her tree that we still have up from last year. I saw Gavin wearing them around the other day and then he put them back. He was very careful with them. There is something magical about those gloves!
Santa came to see us again this year. The cousins were here and that was sure fun! Thanks for coming to see us again, Santa!
Saturday, December 9, 2006 10:26 PM CST What did we do yesterday, Dec. 8? One year after Brooke died? We ate steak! I surprised Gavin and checked him out of school for lunch and we met Nick at LoneStar. Then we went to the cemetery and put out an iron stake with a plaque on it that had a picture of a dove and said "Peace" on it. We don't have her monument yet, but we do have it ordered. Hopefully it will be in for Memorial Day. Gavin designed it and an artist is doing a special piece for it. I am really excited about it and can't wait for everyone to see it. It's going to be very special and unique.
We went to mass at St. Vincent's at 5:30 for the Feast of the Immaculate Conception. I think it is very special that Brooke died on that day. Dec. 8 is Mary's birthday and the day they decided to celebrate the Immaculate Conception. We then went to Mahogany Prime Steakhouse for supper. They have the absolute best steak we have ever eaten and Brooke LOVED it.
That's what we did. We cried. We laughed about funny things Brooke did and said. We spent the day together.
Sunday at 7:00pm the Compassionate Friends group is holding it's 10th annual Worldwide Candlelighting ceremony in remembrance of all children who have lost their lives. You can join in by lighting a candle for an hour at 7pm local time in remembrance of the children gone but not forgotten. I'm sure Brooke has made many new friends in heaven, but there were many there to greet her that she already knew and she has been there to greet more friends home.
I wanted to share the photo of Brooke eating steak, but it was not taken with a digital camera. I scanned it onto the computer but couldn't get it on this site because it is in the wrong form I guess. So I tried to do what Lizzie's mom does sometimes and took pictures of some pictures that I wanted to share. It was harder than I thought not to get a glare and not to get it too cloudy. I hope you can see them good enough!
Brooke's friend Molly had her birthday on the 7th! Happy Birthday Molly! Well, Molly's dog had puppies that day - 2 girl puppies and guess what they named them? Molly & Brooke! I couldn't think of anything better, could you?!
Wednesday, November 29, 2006 9:14 PM CST We survived our first Thanksgiving without Brooke. We have just been keeping very busy, stopping once in a while for a few tears. We wouldn't have traded her for the world though. I'm trying to look at this time of year as more of a celebration for the day that Brooke got to go to heaven. What does every parent want more than to know their child will get to go to heaven? And I know with my whole heart that's where she is. That's not saying our hearts don't ache and that we don't long to hold her in our arms. I wish I could feel the touch of her skin and her kisses again. It's like that song, if we could just have one more day, but then all I'd want is just one more day again. And again......
Wednesday, November 15, 2006 4:38 PM CST So far, so good. We are hanging in there. We are keeping very busy going to the cabin a lot on the weekends. For Thanksgiving we are going to Kansas City to the Chiefs vs. Broncos game and then will be back to Lincoln Friday for the Colorado vs. Huskers game! Then probably up to the cabin for the weekend! We just wish we could still have Brooke here with us. She was so full of energy and excitement. We really miss that. Gavin tells me every day that he misses Brooke. I tell him I do to.
The following info I got from the Candlelighter's support group newsletter:
Cancer is the #1 disease killer of America's children. Each year thousands of children die from cancer. Thousands more battle life-threatening complications from toxic chemotherapy and radiation treatments that include second cancers, heart failure, kidney failure, seizures, learning problems, sterility, and deafness.
In the past decade, ONE new drug has been approved to treat children's cancer....
The fundraiser for the new organization Angels Among Us was a huge success last Friday night. This is a new local organization to help families with children fighting cancer pay their bills. If you would like to help, you can check out their website at www.myangelsamongus.org. I have a link below. Tell them Brooke sent you!
Thank you again for all your continued prayers and support.
Saturday, November 4, 2006 9:40 PM CST It's been a rough week with Lizzie dying. It just brings it all back, plus the holidays and how sick Brooke was at this time last year is just a drag. So the other day I was on my way home from somewhere and listening to the radio and I thought how nice it would be if Brooke could just send me a song over the radio. When the song that was on finished, a new song I have never heard before came on and the words were amazing. I think Brooke was trying to tell me something. I found it online and printed out the lyrics. Here it goes:
Mark Harris - Wish You Were Here
from the album The Line Between The Two
I wanted to tell you how closely I've kept
The memories of you in my heart
And all of the lifetimes that we had to share
Live even though we're apart
But don't cry for me
'Cause I'm finally free
(Chorus)
To run with the angels
On streets made of gold
To listen to stories of saints new and old
To worship our Maker
That's where I'll be
When you finally find me
No don't you be weary cause waiting for you
Are wonders that you've never known
Just hold on to Jesus, reach out your hands
And one day They'll welcome you home
And that's when you'll be
Finally free
Finally free
(Chorus)
I wish you were here, I wish you were here
And all of the dreams that you treasure
Will soon come together
And that's when your sorrow will find tomorrow
And you will rise again
(Chorus)
We'll run with the angels on streets made of gold
We'll listen to stories of saints new and old
We'll worship our maker that's where we'll be
When you finally find me
I wish you were here
Tuesday, October 31, 2006 11:58 AM CST A couple weeks ago Gavin said he wanted to go to the pumpkin patch because Brooke always loved that so much. I usually like doing the things she loved to do to remember the good memories. For the first time, I thought, "I don't know if I can go there." I told Nick that but he really thought we should go.
So nothing like waiting until the last minute, but we went to the pumpkin patch last night. Right away Gavin remembered a story about Brooke there that made us laugh. He said she found a wallet in some hay and it had $6 in it. She took the money out and asked Gavin if he wanted the wallet. He said, "No." so she threw the wallet back and kept the money. It must have been a kids wallet and I must not have seen this happen or I would have made her turn it in. That's probably why I don't remember it. I probably shouldn't even tell that story, but it just shows how she really didn't care what other people thought. She just lived her life the way she was going to. We really were worried about trying to raise her as a teenager! I'm glad Gavin has such a good memory! Well, it was freezing out and windy, so we didn't stay very long at all. We just kind of went there, did a couple things, picked a pumpkin and came home. I'm glad now that we went.
Gavin & Nick always have to get a huge pumpkin. Well, Brooke always did, too. Nick wanted to carve the big one and knew just what he wanted to do with it. He made the Angel Brooke pumpkin. I told him I love it.
Tonight Gavin will go trick-or-treating like always. Last year when Brooke was so sick I was afraid she wouldn't be able to go. But she mustered up and got in the wagon. Just getting her dressed probably wore her out. Well off we went and we just kept going. She wanted to go even farther when we finally came home! The neighbors were all excited to see her out!
We never made it to the pumpkin patch last year and I feel so bad about that. But I told Gavin last night that the pumpkin patch in heaven probably isn't so cold and miserable!
Brooke was reunited this weekend in heaven with another girl we know from Children's Hospital. I've said it before, but Lizzie was the first kid we met going through treatment when Brooke was diagnosed and she showed us how you could continue to live your life with a smile on your face, even when faced with such tough times. Well, Lizzie is a rainbow girl. She loved rainbows and was a rainbow herself to all who met her. If you would like to see the most amazing pictures, you can see them on the photo page of her site: www.caringbridge.org/ne/lizziegirl. After Lizzie passed away, some friends gathered in her families front yard to pray. In the photos they are being wrapped in a rainbow! You're amazing Lizzie! Always were and always will be!
Friday, October 20, 2006 3:26 PM CDT Happy Halloween! Halloween has always been one of the kids' favorite holidays and is going to be very hard this year. Last year Brooke saw a family with matching costumes in a catalog we got in the mail and really wanted me to get them. I'm SO glad I did. The guys participated, if even 1/2 heartedly!
The new book "Pet Tails" is out at Border's. That's the only place you can get it. When I saw it, I knew immediately it is exactly the kind of book that would have been Brooke's favorite. It is full of pictures of pets. When I found the picture of Brooke and Snowball, I started crying right in Border's. They got their own 2-page spread. I couldn't believe it! It's only $12.99. If your kids love animal books, they will really like this one.
Saturday, September 23, 2006 2:00 PM CDT Monday, the 25th: I forgot to update that my cousin had her 3rd baby girl on Gavin's birthday and they named her Brooke! We were thrilled!
I have a few things I want to put out here to let everyone know about some great things coming up. I don't have much time right now - we are getting ready to head to Lincoln to the FB game.
Monday, September 25: Eat at Chili's restaurants and all profits that day will benefit St. Jude's and childhood cancer.
Saturday, October 14: 2nd Brooke Brion Blood Drive at Picotte Elementary just south of 144th and Maple. The American Red Cross is really in need of blood products right now. To schedule a time to donate, contact Jill Bretsen at 493-3655 or e-mail at pjbretsen@cox.net or e-mail Jane King at Janeking94@yahoo.com. They are scheduling appointments every 15 minutes between 8am and 1pm.
Friday, November 10: From 6-10 Fashion Show/Live Auction/ Silent Auction to raise money for a new non-profit organiztion called Angels Among Us. It is a new local organization that wants to help families with the many expenses occurred while your child is going through treatment. Sometimes it is hard just to pay the utility bills even when you don't have a sick child. Check out the website at www.myangelsamongus.org for more info.
Thursday, August 31, 2006 11:50 AM CDT Well, the first week of school is over and Gavin LOVES his new middle school. Everything is going great. I have to say that even though we love our elementary school so much, it is much easier not having Gavin there this year. Every year Nick and I would walk the kids to the first day of school and then walk home. This year we had to get in the car and drive Gavin to his new school. If we would have had to walk him to his old school, I just might have lost it!
Things are getting harder. I think it is because all year I've been able to say "Well, last year we were doing this or that," and now the memories of last year are going to start getting bad. Sept. is when Brooke started having fevers all the time and started having to spend so much time in the hospital. Her legs started to hurt so bad that I had to carry her. I try not to focus on that stuff, but you can't help but think about it. But, I don't want you to think I'm depressed or anything. I am doing very good actually. It's just that there are moments and it is hard. Gavin does very well, also. He is really into his football right now and is doing an awesome job. He's a great little player and he's not afraid to hit. He is playing tight end, linebacker and is on the kick-off team.
Saturday we will be in Lincoln for the Husker game and tailgating. Then we are headed up to the cabin for the long weekend. Tuesday is Gavin's birthday! I can't believe he is going to be 11 on the 5th! Last weekend we went to KC to the Chiefs preseason game against the Rams. Nick and I are headed to California for the USC game in a couple weeks. We are going early to go up to Sonoma Valley and wine country and then will head back to LA for the weekend and the game. My mom is going to stay with Gavin. Gavin's games haven't even started yet. They just had a scrimmage against another team for a practice game. I'm starting to think I may be footballed out by the end of the season! It's fun though. We just keep busy!
I got an exciting e-mail from Borders the other day. A while ago, I submitted a couple photos to a contest they had that would be using photos people sent in to make a Borders exclusive book called "Pet Tails". I sent in two entries of Brooke and Snowball and they e-mailed me back that "out of thousands of entries, one of the photos I submitted was chosen to be in the book". Now I can't even remember what pictures I sent in! I did it online and was looking through so many, that I'm not sure. The new picture I put on the home page here is one of them, I think. I can't at all remember what the other one might have been. Anyway, the book will be coming out in September or October at Borders stores. Brooke would love nothing better than to be in a book about pets! She loved her books and she loved her pets!
Thanks again for all your prayers and support. It means the world to us that so many people continue to check on us and keep us in their prayers.
Sunday, August 13, 2006 10:40 PM CDT It is getting closer to the start of school. Gavin goes to his new middle school on August 23. That is later than alot of other schools, so we are pretty excited about that! He will be in 5th grade and is excited about his new school. It was very hard to go school supply shopping without Brooke. Girls love that kind of stuff. (So do I!) There were a couple little girls picking out some puppy notebooks and it just broke my heart that it couldn't be Brooke. I miss her more now, than ever.
Gavin & I spent some time in Oklahoma at my sisters last week after being in Kansas City for the weekend for Nick's brother's 30th birthday. Football practice has started for Gavin and he is excited about that. We are also looking forward to Nebraska football to start. We have season tickets and a great tailgating spot. Please join us if you ever run into us in Lincoln on game day!
We are having a really hard time without Brooke right now, so please continue to pray for our family. Thank you so much for all your support.
Friday, July 28, 2006 11:05 AM CDT We continue to have a very busy summer around here. I thought things were going to slow down for a while before school started, but things keep coming up! On a very exciting note, the playground equipment will be installed this Saturday, the 29th! The ground work was completed last Saturday. I will put some photos of that in the photo album. I'm not sure exactly what time it will be completed for the kids to play on it. We unfortunately have to leave by noon to head to the airport to go to California. A friend and neighbor, Jay Reilly is going to come up around 11:15 - 11:30 to give it a blessing and if it is ready, Gavin wants to be the first climber! If it's not ready yet, that's ok, he'll get to play on it as much as he wants when we get back! I just want to let everyone know they are welcome to come to the school and check it out and play on it when it is ready!
I want to share a story with you that I think you will really like. Brooke loved to play with her cousin Jacy who is actually a 2nd cousin but she was one of Brooke's best friends. They loved to play dolls together. When Jacy was over, all the doll stuff was out - strollers, carriers, diaperbags and every accessory you can imagine! You know how much stuff babies need! Jacy's mom was telling me the other day that Jacy had been on their deck playing with her dolls all by herself and it was a warm, still day. Jacy said she looked at the flag hanging off the deck and said, "Brooke, flip the flag!" And it flipped over! It totally freaked Jacy out and she went in the house with that "I can't believe what I just saw" look on her face! Her mom told her, "Well, I guess you know who was watching you play with your dolls!" I hope you all get as much enjoyment out of that story as we do!
Wednesday, July 12, 2006 2:40 PM CDT Gavin and I made it to Pancake Days in Butte and it was a lot of fun. We saw a lot of people that we don't get to see very often. Before we went, I wasn't really sure I wanted to go because it was going to be so hard. And then one day Gavin almost got a little angry and sad at the same time and said he didn't want to go to Pancake Days. I told him when we got to Grandma's house if we didn't want to go, we didn't have to, but we could at least see our cousins that came all the way from Oklahoma. Well, when he saw the carnival set up on Main St. he decided we could go for a little while! Well, we ended up going 2 nights and he had a ball. It is fun and hard at the same time. The weekend before the 4th was really hard.
Next week is Camp CoHoLo and a couple of Brooke's teachers are going to be counselors this year and they are so excited. I am so happy for them, but sad at the same time that Brooke can't go. She will be there in spirit though! I asked her one teacher if she had any twin size sheets to take and she said no, so I am going to send Brooke's dog sheets with her. Brooke would like that!
Gavin is at Camp St. John all week at Elkhorn Mt. Michael. It is a boys catholic high school and he always saw how much fun Brooke had at camp and always wanted to go to an overnight camp for himself! I am keeping very busy. There's always plenty to do and we have been gone so much I am doing a lot of catch up.
I just want to tell you about an amazing girl that we met at Children's. When Brooke was first diagnosed she was in the hospital a couple rooms down from Brooke. She was the sweetest thing you ever saw - she just glows. She had no hair and we were just trying to soak in the fact that Brooke had cancer. I couldn't even say the word for a very long time - I just said tumors. Lizzie and her parents were at the nurses station making origami cranes and Lizzie's room was just full of them. She was working on her goal to make 1000 of them! Brooke wanted to try so Lizzie's dad helped her make one and Lizzie was so excited about camp coming up the next week. They asked Brooke how old she was and said "You'll get to go to camp next year!". I about lost it because I just couldn't believe that my child could go to a camp for kids with cancer. Brooke had just turned 5 and you have to be 6 to go to camp. Lizzie made Brooke an origami heart and I still have it. Lizzie is still battling this disease and she needs all the prayers she can get. This is one of the sweetest girls you could ever meet, so I just wanted to pass along her website and ask for your prayers for Lizzie and her family. It is caringbridg.org/ne/lizziegirl. Thank you.
Friday, June 30, 2006 9:41 AM CDT Yesterday I got to see a little bit of Oprah. She had Susan St. James on and her family and they were talking about when they lost their son Teddy in a plane crash in CO. I felt like everything she said, I could have been saying. You never want anyone else to lose a child, but to know other people know how you feel really helps a ton. She said she always thought if she lost a child she would sit in a chair and never speak again. I always thought if I ever lost a child I would never be able to get out of bed again and that I would just cry, cry, cry. It just doesn't work that way. You get up, you brush your teeth and you get through the day. Some are better than others. She also told of a saying she has and it is exactly how I had started looking at life even before Brooke died. "We are not human beings having a spiritual experience. We are spiritual beings having a human experience." I really believe that. Now I realize how short life is and that we are really only here for a short time in the whole scheme of things. We are here to learn something and I hope I can figure that out. I think Brooke actually had it figured out. She was so wise beyond her years. And some never do figure it out.
Anyway, I was so glad to see some of that show. We are getting ready to go to Pancake Days in Butte, which Brooke loved. I keep thinking of everything in terms of how it was "last" year when Brooke was here still enjoying everything with us. We saw a great fireworks show at the Tiburon Golf Course and we sat right under them and she was on our laps. I go to get the swim bag out to go swimming and there are her goggles. I walk by her room a hundred times a day because it is at the top of the stairs. It feels like she should be coming back to play with her things. Camp CoHoLo is coming up and Brooke loved camp almost more than she loved dogs! This is just SO hard sometimes. I wish she were here to go to camp again. The first year she went, she had just turned 6, which is how old they have to be. I didn't know if I wanted her to go yet, but they pretty much told us she was going. Anisa is like that! Thank you, Anisa! I am SO glad! Let your kids do things! Let them be kids! You never know what might happen. The bad stuff always happens to "other people", until it happens to you. I got that from Abby's journal and it is so true!
On a more exciting note, the playground equipment was suppose to be delivered the other day. Plans for instillation are for Saturday, July 22 and Saturday, July 29. We are very excited about that!
Thanks again for checking on us and for your continued prayers and support. Another thing I remember Susan St. James said was that someone told her it takes 1000 days. That made me feel better knowing that maybe in another 800 days or so I might feel a little better! But I'm so scared of forgetting. I don't want to forget ANYTHING. Even the pain, because it is a memory of Brooke.
Friday, June 23, 2006 5:10 PM CDT We made it home from Washington DC last night about 10:00. It is good to be home, but we had a full week and saw a lot of DC. Parts Gavin thought were boring, but for the most part he really liked it. He really liked hanging out at the pool on the roof of the hotel with the other kids that were there for the conference.
We met with Senator Hagel, Senator Nelson and our Representative Lee Terry. We are trying to get them to support a new Authorization we're trying to get passed called the Conquer Childhood Cancer Act 2006.
Gavin and I got to tour the White House and the Capitol. We saw a lot of Memorials and museums also. Last night we were waiting for our plane and we were like - there's Tom Osborne! And here comes Lee Terry. Isn't that Chuck Hagel over there? And there's Ben Nelson! We were joking we hoped the plane didn't go down or the governor would have a mess on his hands. Then I spotted the Archbishop and said I think we'll be all right! They were all on our flight home!
I will update more later, but just wanted to let you know we are home and the trip was a success!
Sunday, June 11, 2006 1:53 PM CDT We survived an all nighter at Relay for Life last night! We actually set up a tent and crashed in there for a while, but that was not very good sleeping at all! So we came home about 7:30 am and went to bed! The kids always begged us to stay all night, so I told Nick we better do it because we might not do it again next year. We'll see. Nick's brother's family stayed all night with us, too. We had to go in the school for about 1 1/2 hours because of lightning, but it never did more than sprinkle and it was really cool out.
Friday night we had all our family here to grill out for Brooke's birthday. The kids wrote messages on balloons and sent them off to her. It was 104^ that day so I told them all to bring their suits and we blew up a couple pools and got out the slip n' slide! They had a lot of fun. Gavin loves having his cousins around a lot and having them spend the night. He is used to having a sister around and not being by himself all the time. But he does very well, I must say.
Thursday I had a nice visit with my Aunt Diann, cousin Keyla, my Grandma Mohr, my great Aunt Lorraine Reiman and her daughter Nancy Tex. We all met up at my house for the afternoon and it was so great seeing them all again!
Thanks again for checking on us. We are moving pretty slow today and the day is all messed up! Gavin and I are excited to go to DC next week. We will leave on Saturday!
Monday, June 5, 2006 1:31 PM CDT Thursday - I added a new picture at the bottom of the photo album. It is a picture I took of Brooke & Gavin's cousin Meghan at the zoo the other day. She is holding a bird on a stick. We heard a while back that a sunspot in a picture is an angel. I told Meghan that and she loves this picture!
The CureSearch walk on Saturday was a huge success! Thank you everyone who was a part of our team and to everyone who donated to such a needy cause. The walk raised $50,000 for CureSearch to help find cures for all the different types of childhood cancer. Brooke's Barkers raised $1500! More money is spent on just one adult type cancer (i.e. prostate) than all the childhood cancers combined. We'd like to change that! Thank you to our local organization In the Arms of Friends for putting on such a fantastic event!
We have been extremely busy around here - which is a good thing. Gavin's 3 cousins have been staying with us for a week while their parents are in Hawaii. I wish that was me there! Gavin has so much fun with his cousins.
Saturday, after the walk, some cousins from Lincoln also came over and the Lambert's came and we ordered pizza for lunch and the kids had a ball. They had water balloon fights and got soaking wet! We've been to the zoo and swimming, too. I love having all the commotion though, it's better than the quiet!
Tuesday, May 30, 2006 9:06 AM CDT We hope everyone had a nice Memorial Day. We really did. We went to the cabin and it was very hot and windy. We got to see a lot of relatives and friends. Saturday we went to Ft. Randall where friends were camping. It was so windy, but Gavin did get to do a little tubing with them later in the day.
Sunday the guys all went to Chamberlain, SD and I think they caught 17 walleye. Sunday night we ran over to Chambers to the Lambert's Hog Roast. That was delicious and fun! Always great to see the Lambert's! Molly and Bethany sang a song their dad wrote. We were a little late to hear the song, but they have sang it to us before and it is the sweetest thing you've ever heard. I will put the words on the bottom of the journal.
Yesterday we had a lot of visitors at the cabin and Gavin & I helped Nick spray thistles. We also had to wait for a delivery on supplies to put up a shed that didn't get there until 5:00. So of course we were ready to get home and Nick and I took turns driving and we BOTH got picked up! Nick got a ticket and I got a warning for going 54 in a 45 - going through a town the highway goes through. I have never been stopped in my life! Gavin thought it was funny!
Abby, Emma & Kristi Bridgewater have been here from Kansas for Abby's spinal tap that was Thursday. We are really enjoying having them here. Gavin loves having someone here and he gets along great with the girls. Tonight we have a couple cousins coming to spend the week while their parents go on vacation. So Gavin will really be having fun with this being his first week off school!
We are getting ready for the CureSearch walk on Saturday at Village Point from 8 - 10 am. Anyone who would like to join us is more than welcome.
I'll put new pictures of Gavin in the photo album.
This is the song the girls sang:
Song of Hope
Words and music by Timothy C. Lambert
Who am I, just a girl who's been down a road too many have trod,
But I know that God spoke through me, I feel I can see a plan for my life.
Help us Lord to let others know thet there's hope when we lean on you.
Thank you God for the trials in life, for they draw us closer to you.
Who are we, just some girls who've had several friends who did not get well.
So let's spread the word and we'll find a cure and we'll celebrate on that day.
Keep close watch on our friends in heaven, some names are Haley and Brooke.
Help to heal those who still are fighting, so please let's all take a look.
Who am I, just a girl who's trying to help others get throught the fight.
Who are you, you are people too, so let's pledge ourselves tonight.
Help us Lord to let others know that there's hope when we lean on you.
Thank you God for the trals in life for they draw us closer to you.
Tuesday, May 16, 2006 1:28 PM CDT Monday, May 22, 2006 Another "handsome" young man we knew from Children's Hospital passed away this morning from neuroblastoma. Skylar was 5 and if you would like to leave his family a note of encouragement you can do so at ne/skylarberry. Please say a prayer for his wonderful family. Thank you.
You are invited to join us for the 1st MileStones Walk on Saturday, June 3 at Village Point Shopping Center from 8am to 10 am. We are going to have a team called Brooke's Barkers and if you would like to be on our team you can call me at 965-9280 or e-mail me at nbrion@cox.net. This is the 1st year for this walk and it should be fun. I think there will be clowns there and it won't be such a long walk. Any individual who raises $46 or more will get a buff designed by BuffUSA (the same company who designs the buffs for the popular srvivor television show.) Every person who raises $100 will receive a gift from CureSearch. I don't know what that will be. This is a fundraiser for CureSearch and all money raised will go to CureSearch which is the Childhood Cancer Research Center. We have found out the American Cancer Society gives very little money to childhood cancer.
Every school day 46 young people or two classrooms of students are diagnosed with cancer in this country. Cancer still claims the lives of one in four infants, children and young adults diagnosed. Cancer is the leading disease killer of children. It kills more kids that AIDS, asthma, Cystic Fibrosis and Diabetes combined. Yet childhood cancer is horribly underfunded. If you would like to raise money to donate to this cause all checks should be made out to CureSearch. If you would like to donate online to Brooke's team you can go to www.firstgiving.com/brookebrion. I put a link on the bottom of this page, but sometimes the links don't always show up on here.
We are going to be having team shirts made. They will probably cost around $10. They will have pictures of Brooke on them. If you would like to order a shirt (even if you are unable to walk that day) I will need to know by Monday, May 22 so we can get them ordered.
Thank you again for all your prayers and support.
Saturday, May 13, 2006 10:49 PM CDT HAPPY MOTHER'S DAY to ALL mother's out there! I can't believe all the wonderful mother's I have met over the past few years. I always new my mother and grandmothers and aunts were some of the best ever, but now I know that there are SO many lucky children out there! I just wish all children could be so lucky as to have a mother like mine or these other mother's I know! I also wish there weren't so many mother's with broken hearts having to celebrate Mother's Day without ALL their beautiful children.
I still like to believe in my heart that I am one of the lucky ones because when I get to heaven I will have a little girl forever. We miss her so bad here that it hurts so bad sometimes, but I love how another mom who lost her Brooke put it ~ if God Himself had told me what the future would hold and all the disappointment we would have to go through, and He had given me the option of allowing someone else to be Brooke's mom or allowing me to have the honor of being Brooke's mom for seven and a half years, HANDS DOWN, I WOULD BE BROOKE'S MOM! That is exactly how I have felt and Brooke Clemons' mom put into words! (ky/brooke) (Thank you, Stephanie)
Monday, May 8, 2006 3:30 PM CDT Today it has been 5 months since we have gotten to hold Brooke. In one way it seems like forever and in another way it feels like she is still here. I know she is here with us and that is why we feel that way. Gavin is doing so well. He really misses Brooke, but always reminds me that she is in a better place and doesn't have cancer any more. Snowball is doing good, too! People ask about him! I was afraid he might get some kind of dog depressed or something, but animals are so smart and he has never looked for Brooke. He knows. I brought him to her when she was dying - I put her hand on his soft head so she could feel him. I brought him back in when she was gone and he wanted nothing to do with her body. She wasn't there any more. It wasn't her. He does lay with his head on the floor and look sad sometimes, though. Nick and I are trudging along day by day. Some days feel better and some days are hard.
We went to the the cabin this weekend. The guys had to fix some fence. Snowball got to go along and thought he was in heaven himself. Except it was like tick city! He still has a couple more we need to get out of his ear. I'm waiting for Nick to get home. Gavin and I visited with my Grandma and went and saw my aunt & uncle and some cousins. Gavin wanted to know where my mom lived when she grew up, so we drove over to the old farm house to show him and he played in the Ponca Creek a while where Grandma used to always play! He wants to go back there this summer so I'm sure we will. We saw where my great great grandparents homesteaded from Sweden. Gavin thought that was cool because they have learned about homesteading in 4th grade. On Sunday I took Gavin and his cousin Chase up to Fr. Randall Dam and they did a lot of exploring on a swim beach and around the old fort area. They didn't find too much. Although Gavin did get all excited when he found a penny. He looked at it and said it was from 1977. I told him Brooke must have sent it to him because Gavin now always uses the number 7 and says that is his lucky number because Brooke was 7.
Brooke's friend Matthew had his birthday party this weekend and had his friends make a donation to Brooke's Memorial Fund instead of giving him presents. Thank you so much, Matthew. That is so hard for an 8-yr-old to do! Matthew's mom was telling me a while ago how she remembers Brooke at Matthew's party last year. The kids were all getting in the van with Tracy to go horseback riding and she said Brooke said, "Um, can I ride with Larry?" (Matthew's dad) And they said "Sure! But why?" Well, it was because their new puppy Dakota was riding with Larry and Brooke wanted to ride with the puppy! So she did! Tracy said she knows Brooke would have had just as much fun just sitting under a tree with Dakota all day as she did riding horses and that is so true!
Thursday, April 27, 2006 12:15 AM CDT I just wanted to recommend an article for you to read. It is in the May 2006 Ladies Home Journal. The name of the article is "Losing Lulu". This is how it starts:
It was a dreary, drizzly day in March, 2001, the time of year when New England turns from snow to mud. The landscape was sheathed in monochromatic gray, not a bloom or bud in sight. "What a rotten day," Gretchen Pyne remarked as she drove home from an errand. In the backseat of the car, 3-year-old Lulu had donned a pair of plastic rose-colored glasses her father had recently bought her.
"Mama, look!" she said. "The whole world looks pink! Try them on."
Gretchen, cranky, told her daughter she needed to focus on driving. Then she looked in the rearview mirror and saw Lulu's crestfallen little face.
When they pulled into the driveway, Gretchen took the glasses. "Wow!" she exclaimed. "The world really does look better! Lulu, can I have these?" she asked.
The girl shook her head. "No, you have to find your own."
That night her mother wrote down the story in her journal.....
The article goes on to tell about the tragic death of Olivia Lynn Pyne at 4 years of age. Her family called her Lulu. She was a beautiful little girl and the article will touch your heart. I hope you enjoy it. (Be prepared for some tears!-but way worth it!) What wisdom these children have! I guess we all need to find our own rose-colored glasses.
Monday, April 24, 2006 11:26 AM CDT Friday night was Family Fun Night at our school. Gavin had a ball. They played lots of games and he came home with a new basketball for a prize - not bad!
The silent auction for Brooke's Memorial Fund was definitely a success. We raised more than $3500! Thank you everyone who donated and bought! I think we can get something ordered now, but first we need approval from the school system. We still have lots of Brooke wristbands available for $3 each.
Nick was at the cabin turkey hunting all weekend with some other guys. So Gavin and I stayed in Omaha and did lots of things with cousins and Grandpa & Grandma came down on Friday night for the weekend.
Sunday I made Gavin go with me to Children's Hospital for a special remembrance service they do for all the children that were their patients who lost their lives in the last 2 years. On the program I figured there were almost 150 names. That includes all the children there, not just the oncology kids. There were plenty of those, too. I heard quite a few names I knew. It's not fair for any of these kids. It was a nice service. Gavin made a painting on a piece of canvas they had for projects for the kids to do. He drew a blue sky, green grass and a sun like Brooke always made and then he drew an angel up in the sky that is Brooke! He thought the whole thing was pretty boring though!
When Gavin went turkey hunting a couple weeks ago, Nick's brother Jason took some pictures. They were showing them to us on his digital camera and on and above Gavin's head on the pictures there is a sunspot. Just on Gavin, not the other boys. My sister-in-law said that a sunspot on a picture is suppose to be an angel! Well, it sure looked like Brooke was with Gavin! He really liked that! I will try to get a picture in the photo album. I don't know if it will show up as good as on the camera. I'll try.
Thanks again for all your prayers and for all your prayers for all our cancer friends and their families.
Monday, April 17, 2006 12:27 AM CDT We hope everyone had a nice Easter. Ours was nice but VERY hard. I took Gavin and a couple nieces to the Easter Egg hunt in the park Sat. morning and they had a ball. On the walk home they stopped at the picnic table to see what candy they got in the eggs. Gavin was so excited and all wound up and talking about Easter and how he couldn't wait to get up and find the eggs the bunny hid and then he just stopped like he just remembered again. "Oh, yeah. Brooke won't be there. It won't be very much fun by myself." Then I started crying and have been having such a hard time ever since.
Sunday we took a basket of things to the cemetery to put on Brooke's grave. Everyone brought different things. There were some stuffed bunnies, some flowers, some homeade cards and an Easter Egg and Gavin brought Brooke some of her favorite Pokemon cards! He even sent one to her on his balloon.
PS Our friend Dylan has just gotten his own website! Dylan had Rhabdomyosarcoma and was treated the same time as Brooke and relapsed the same time as Brooke. He has just finished his treatments for relapse and had his port out the 13th. You can leave him an encouraging message at www.caringbridge.org/visit/dylanodom.
Thursday, April 13, 2006 1:09 PM CDT Happy Easter! I keep thinking about what a wonderful time Easter must be in heaven. Easter and Christmas must just be the biggest celebrations. We cannot even imagine it, I'm sure. We are staying in Omaha and going to Nick's Mom's on Sunday with most of his family. We are planning on taking balloons to the cemetery to release on Sunday afternoon. It will be hard, but fun and special.
I wanted to share something I read in a book. It sure made me and Gavin feel better. The author was telling about one time when a seven year old girl almost drown and was in a coma for a week but now is OK. When they cleared everyone out of the pool for break, she was at the bottom of the pool. He didn't know if she had gotten hit in the head or had a seizure or what happened, so he asked her, "What happened to you in the pool?". She said, "You mean when I sat on Jesus' lap?" He said he was about floored because that is not what he was expecting. He asked her about it and she looked him in the eyes and said, "You'll see. Heaven is fun." He said he'll never forget how she looked him in the eyes and said, "You'll see."
I hope that puts a smile on your face like it does ours. That's probably what Brooke would like to tell us now. There's no hospitals there and no needles and you don't feel icky and your legs work so your mom doesn't have to carry you to the bathroom and you don't have to have bloody noses all the time and you can just run and jump and play with all the other kids and dogs and giggle like you are suppose to.
Gavin and his friend Nick sure had fun at Great Wolf Lodge last week. It wasn't too busy there. We also had to spend some time in the arcade and at Cabela's. Gavin needed some new camo, because what he has is getting a little small. When we got home from Kansas City, Gavin went to the cabin with Nick and Nick's brother and son and they met a couple more guys up there. It was youth turkey hunting season. Gavin shot his first turkey. He'll show it to you if you want to see it - it is in my freezer! We are not eating it, though. It sat outside up there and they didn't clean it right away.
Last night we had our friend Dylan from York spend the night at our house with his family. Dylan went through treatment for Rhabdomyosarcoma the same time as Brooke went through treatment and relapsed the very same time as Brooke. He has finished his treatments for relapse and today was getting his port out! Way to go, Dylan!
Tomorrow Brooke's friend Molly will be in town. Please pray for Molly to have a great check-up! Hopefully we will get to see her and her wonderful family.
I don't even think I have any pictures from Easter last year. What's up with that? I don't know. I take pictures of everything. I did have the kids' picture taken somewhere, but don't have a scanner hooked up to put it on here. I just ordered a new one, so maybe I can get that picture from Easter last year on here sometime next week.
Thanks again for checking on us and thank you for the memories some of you have shared with us. They are SO special to us.
Monday, April 3, 2006 3:20 PM CDT Gavin started spring break today! He actually got out of school early Thursday for parent-teacher conferences and didn't have school Friday, either. I'm glad the kids were out of school Thursday when the Tornado sirens were going off right when everyone would have been picking up kids! No tornados touched down in Omaha that I know of, but there was some wind damage.
We never really planned anything for the week, so Nick said I should take Gavin to Great Wolf Lodge in Kansas City. He is taking a neighbor friend and we are going Wednesday and coming home Thursday. They are SO excited about it! It is a hotel with a huge indoor water park in it. They get to swim both days. (Also a very cool arcade!) Gavin & Brooke always wanted to go there so I feel so bad that we never took Brooke. I took Gavin and some cousins last summer while Brooke was at camp and it was our little secret. I told them they could NEVER tell her. Otherwise she wouldn't want to go to camp for fear of missing out on something fun we would do without her. We couldn't go after she relapsed because she had a central line in and couldn't be in the water. We always thought "We can do it next year." You know how many times people think that, but you never really know. SO don't put things off!
I still need to get my Easter decorations out. It's hard without Brooke here to sit them everywhere. I pretty much would let her put stuff wherever she wanted to. She loved doing that. The nice weather is great, but the last time it was spring, Brooke was doing so well and that makes it hard.
I am finally having memories of Brooke. I was getting so frustrated because I couldn't remember things. They say it is a coping mechanism but I thought that was just stupid. Let me tell you, memories do make you miss her more. But I'd rather have the memories and a few tears than not have the memories. I need to start writing some down so we don't ever forget them. We only have 7 years of memories that have to last us our lifetime. If anyone has any memories of Brooke you would like to share with us we would absolutely LOVE that. It would be a wonderful gift you could give us, just by letting us know your memories! I always think of the saying "Better to have loved and lost than to never have loved at all." Or however that goes, it is so true.
I also wish I could dream about Brooke. She has only been in one dream that I can remember since she died. Brooke always wished Snowball was a girl so he could have puppies. Well, my dream was that Snowball was a girl and he had a whole bunch of puppies and she was sitting on the floor in her Snowball shirt holding baby puppies and looking up at me with her bald head and a big smile on her face. Then I woke up and I was so mad that I woke up!
Gavin and I are excited about a trip we get to take this summer. We are going to Washington DC to Gold Ribbon Days to a conference on childhood cancer which is June 19 - 21. I think we get to meet with some of our Congressmen and stuff, too. We have never been to DC before so I told Nick that I really wanted to go. So he got on the computer and booked us tickets and we are going on Saturday and coming home Thursday night. The conference is Mon, Tues, and Wed. That way we will have some extra time to check the place out. I am so excited that we are going to get to meet some of our caringbridge families from across the country that we might not ever get to meet otherwise. I will tell more about this later, too.
We are still raising money for the playground equipment for Brooke's Memorial and I think we are getting close to our goal. We are selling Brooke wristbands for $3 each. If you would like some I can mail them to you. Our address is Brooke Brion Memorial Fund, 14816 Lake St., Omaha, NE 68116. We are also having a silent auction at the Picotte Family Fun night on April 21. If anyone has anything they would like to donate to the auction it is also greatly appreciated.
I didn't think I really had anything to update and now I can't stop! Thanks again for all your prayers and support and all the support we have gotten for Brooke's Memorial. Everyone has been SO wonderful to us! Thank you!
Sunday, March 26, 2006 2:23 PM CST Thank you! Thank you! Thank you! The blood drive was a huge success! Thank you to everyone who helped or donated blood and especially to Jill and Paul Bretsen and Jane King in organizing this special event. We had 76 donors come and only 7 were turned away for various reasons! (One mom didn't weigh enough!, we had a grandpa who just got a tattoo and a soldier who hasn't been home from Iraq long enough! and of course some whose iron was too low!)
The Red Cross was hoping for 55 donors to come and that 40 would be able to give. We way surpassed that! The Omaha World Herald came to do an article that is in today's paper. It is very good. It made me cry! You can go to Omaha.com and search under stories for the blood drive. They don't make it really easy to get to, you have to register to their site, but it is a good article if you would like to read it.
I'm also going to put some new photos in the album of Brooke in the hospital. There were a lot of first time donors yesterday! They were being BRAVE LIKE BROOKE!
Wristbands are still for sale for $3 each. I can mail them to you. Our address is the Brion's, 14816 Lake St., Omaha, NE 68116.
The PTA is sponsoring a silent auction at the Picotte Family Fun night on April 21. The proceeds will go to Brooke's Memorial Fund to help purchase playground equipment for the school. If anyone would like to donate to the silent auction we would really appreciate it!
Our friend Abby, who has leukemia, came to the blood drive with her parents and sister yesterday. She is selling Fairies for Friends and donating the money to our local organization 'In the Arms of Friends' who helps out families of children with cancer. You can check on Abby at www.caringbridg.org/visit/abbybridgewater. She loves to have people sign her guestbook! (As we do too!)
P.S. The Girl Scout Brownie troop that consists of Brooke's 2nd grade friends sold boxes of Girl Scout cookies and some cute pins they made, during the blood drive to donate to Brooke' Fund. One of the mom's called tonight and said they made $275! Thank you girls! That was a huge success!
Sunday, March 19, 2006 8:47 PM CST Gavin is so excited school has already been cancelled for tomorrow! We got a few inches today. I'm not exactly sure how much but they are expecting more. I am suppose to work tomorrow. I filled in at my old office a couple days last week and am suppose to work a couple this week. Now I'm really hoping for a snow day, too! Ha!
My sister came Wednesday night with her 3 kids from Oklahoma because they were on spring break. We also had my brothers soon-to-be 3 year old for a few days while the rest of his family went skiing in Colorado. It was a perfect time to have him because we did fun kid stuff all weekend. It is really hard doing that stuff without Brooke and missing her giggling and all that energy she had. We went to Build-A-Bear one night and my little nephew Grant built a puppy and named him Snowball. I asked him if he wanted any clothes for it and he picked out a hard hat and tool belt. It was so cute. All the kids picked really cute stuff of course. We also went ice skating and to the activity center at Mahoney State Park. We went to the Children's museum, the movie "The Shaggy Dog" and out for chinese food. I was quickly reminded why it's easier to take all those young kids to a McDonald's!
"The Shaggy Dog" movie was definitely another Brooke movie. She would have loved it. If she were here she would now always be pretending she was bit by that dog so she could turn into a dog like that! I don't know how many times she went to clinic as a dog. Sometimes in her dalmation outfit and sometimes just as a dog. I wondered sometimes if it was a coping mechanism so what they were doing to her was like they were doing it to the dog instead of really Brooke.
Reminder: the 1st Annual Brooke Brion Blood Drive is this Saturday at Picotte Elementary school. The school is off 144th St. between Blondo and Maple. It is going to be from 8am to 2pm. We will be set up in the gym and cafeteria. Appointments or walk ins are welcome. For more info you can call Jill at 493-3655. Thank you to everyone who has worked so hard to make this a reality. There have been some kiddos up at the hospital who have had to wait all day to get their platelets or blood. With the snow storm, supply is going to be even lower. Your gift of blood is an amazing gift you can give.
We still have a lot of Brooke wristbands to sell. We are still trying to raise more money for playground equipment for the school for Brooke's Memorial. If you want to order some, our address is: the Brion's, 14816 Lake St., Omaha, NE 68116.
We are also going to be having a silent auction at the Picotte Family Fun night at school in April. The proceeds from that are going to Brooke's Fund, also. If anyone has anything they would like to donate to the silent auction, it would be very much appreciated. Thank you.
Please pray for our friend Skylar who is now on hospice. He is one of our little buddies from Children's Hospital. You can leave him an encouraging note at www.caringbridge.org/ne/skylarberry. Another sweet young lady has been fighting so long and hard and she is the first kid we met at the hospital with cancer when Brooke was diagnosed. That was in July 2003. You can visit her at www.caringbridge.org/ne/lizziegirl. She always has the sweetest smile and I will never forget when we met her.
I will put some new pictures in the photo album, too.
Sunday, March 12, 2006 7:22 PM CST I've been trying to get a little re-organized around the house after all those months of just putting things places and not really caring where! Well, I ran on to a song Brooke wrote for Gavin. I had forgotten about it. Brooke was in the hospital, she would have been 5 at the time. I don't know why she said she was 3 in the song! And the part of the song when the "sailor went to sea sea sea" I just didn't write the whole song down, even though she sang the whole thing. She stapled some paper together to make a book, drew a picture on the front and made up a song that she had me write down as she went. I remember writing as fast as I could! She told me what the pictures on the front were and I wrote beside them what she said. Also, when she started kindergarten, she still couldn't say all her words clearly!
The cover is titled "BROOKE TO YOU GAVIN MOM DAD TO YOU GAVIN" There's a boy kicking a soccer ball and it says "And Gavin kicking the low soccer ball. The End." There's a girl kicking a soccer ball high and it says, "Brooke kicking on the soccer ball way up in the air. I put my leg down fast before you guys see it. The End." There's some grass and a flower and over to the side it says, "Dear Gavin, I love you the most. The End. I can't help it. The End. I love you the most and you're the best brother in the whole world for buying me this pen. And I can't help it. The End."
Then she sang a song and I wrote it on the inside pages of the book for her. Here is how it goes:
Brooke's Song
I lub you bery much when I can see it
I lub you as much as I can help it.
Mm Mm Mm
I lub you so much Gavin
I lub you bery much. I can't help it.
I I I I I lub you, Gavin.
Dear Gavin,
I I I I I lub you.
Thank you for bringing me all the snacks.
I lub you. The End.
Mm Mm Mm Mm Mm Mm Mm
Yes Yes Yes Yes Yes Yes
I lub you Gavin
I hab to sing this song
You hab to lub me, or I"ll lub you more.
I lub you a hundred and a thousand together.
I lub you.
The End
Another Song
A puppy song and a cat song chasing up the rabbit tree.
I couldn't help it so Gavin bought me a poodle pencil to calm the pup down.
This is another song on the next picture.
I lub you Gavin.
La La La La La
I can sing this song for you.
A sailor went to sea sea sea...
clap clap clap clap...
stomp stomp stomp...
oo wachawa oo wachawa
But all you can sing this with me.
I can't help it Dad and Gavin
I lub you bery much.
You're bery special.
I couldn't help it.
I had to write this story for you.
I lub dogs the most you can help it.
Because we hab a dog.
Dear Gavin,
This is a song about dogs and cats.
But there's it's a different dogs and cats song.
Next song I'm going to tell about a story I lub bery much.
It's not a true story but I lub it bery much.
I lub you Gavin.
The End
Dear Gavin,
Now I can sing this dog and cat song one right now.
Then we have more dogs and cats after all of them.
(We're gonna hab a talk when we get home, to see if you like this.)
Please keep this.
I made it just for you like you made the poster for me.
I lub you.
Dear Gavin,
Blah.
There Gavin.
I had to do all the work telling Mom what to put on here.
So please keep it.
I couldn't help it because I lub you bery much.
There Gavin.
Blah
Here's the dog and cat story.
But it's not true.
I made it up,
Blah Blah Blah
I was 3 years old when I told this story to Mom.
Love dogs and cats the mostest.
But Snowball is the nicest dog.
But when he goes poop or pee, don't stick his nose in it, because he love us the most.
He loves me the most.
Dear Gavin,
This is a song I made up in my heart.
I couldn't help it when you said that you lub me so much
I lub you as much as I could help it when you put me on that picture.
You and me look like two sick people walking up that hill.
Blah Blah Blah
I lub you
Thank you for letting me sleep in your bed all the times.
No Mom's, No Dad's, No my bed.
Just your bed Gavin.
I lub you dear Gavin,
me, Brooke
(you need to read on the back, too. I couldn't help it.)
(on back)...
I made this story just for you, Brooke
Thursday, March 2, 2006 4:41 PM CST Update: Tuesday
I would like to put a couple prayer requests out here. First, for a precious little boy named Kyle who is from Iowa. He has relapsed twice with Wilm's (the same as Brooke) and came home from the hospital today with not much time left. His family is traveling the road today that we traveled just 3 short months ago. They could use all the prayers you have to offer. His site is caringbridge.org/ia/kyle.
My second request is for one of my wonderful neighbors who lives across the street from us. She is donating a kidney to her friend who has been on dialysis for a year. MaryAnn will be going in to surgery at about 8:30am and her friend at about 9:00. I am so excited for her friend and this shows you what wonderful neighbors we have. They need our prayers for successful surgeries and recoveries. For notes of encouragement to MaryAnn you can visit her site at caringbridge.org/visit/maryannreilly.
I know I can count on all of you for your wonderful prayers! Thank you!
Update: Monday
I forgot to put on here that we have 2 wristband sizes: youth and adult. If you already sent me some money and want a certain size, you can leave me a message on here or e-mail me at nbrion@cox.net. Thanks.
The Brooke wristbands are here! I don't think Gavin ever takes his off! We are selling them for a minimum donation of $3 each. We are trying to raise more money for Brooke's Memorial Fund so we can purchase a piece of playground equipment for the kids' elementary school. Thank you to everyone who has already gotten theirs at school! If anyone else is interested, just let me know and I will send them to you or get them to you. Checks can be made out to the Brooke Brion Memorial Fund. Our address is the Brion's, 14816 Lake St., Omaha, NE 68116. Thank you!
Also underway is the Brooke Brion Blood Drive. People have been signing up for that. It will be held March 25 from 8am to 1pm at Picotte Elementary. I think they are trying to extend the time on that because of the great response we are having. Anyone wishing to participate in that can call Jill at 493-3655.
Important Facts Regarding the Need for Blood Donors:
Blood is needed every 2 seconds.
About 1 in 5 people entering a hospital need blood.
Blood is always needed for treatment of accident vicims, cancer patients, hemophiliacs and surgery patients.
Blood cannot be manufactured of harvested.
Giving just one pint of your blood can help save lives, and it only takes about an hour.
Donating blood saves lives!!
The last time I went to the American Red Cross to give platelets I couldn't believe all the pictures of the kids with cancer on them they had around on different posters and brochures and things. And they are all our friends. Thank you for your gift of blood!
Monday, February 20, 2006 8:36 PM CST I see some people have been signing Brooke's guestbook and talking about the movie "Eight Below". We did go see it on Friday night~opening day. That movie is Brooke all the way. Brooke had seen a preview to that movie when we went to "Chicken Little" while she was on hospice. She asked me if we could go to it when it came out. I just had to swallow hard and tell her of course we would, even though it wasn't coming out until February, knowing she probably wouldn't be here.
Brooke probably would have been a guide in Antarctica just so she could be with those dogs. She would have lived that life. We were going to take her to Alaska when she got better so she could ride with the sled dogs. I told her we could go to Canada or Montana and do that, but she wanted to go to Alaska. For her birthday last June, the only thing she could think of to ask for were some figurines from the zoo gift shop of wolves!
I just finished reading a book the other day and there was a part in there that stands out in my mind: In the English language we have the words widow and orphan but there is no word for a parent who has lost a child.
I just wanted to throw that out there because I hadn't thought of that before. It's funny how something that seems so little would mean so much to someone like me. We are who we are and yet not the same as we once were. It's just hard to explain. I use to think if I lost a child I wouldn't be able to get out of bed. But it doesn't work that way. Some days I actually feel like I have a lot of energy - almost like Brooke has given me some of hers. I use to think of us as humans having spiritual experiences, but now I think of us as spiritual beings have human experiences. I could go on and on. (But the Bachelor just started! Got to go! Ha! Ha!)
PS I added a new link to a video that is very inspirational to watch. It is called "The Survivor Movie". I hope you like it. You may need to turn up your volume.
Monday, February 13, 2006 10:00 PM CST Happy Valentines Day! Gavin is going to take Brooke's Snowball box to school tomorrow to use for his Valentine's party. He didn't want to make a new one, he said he wanted to use Brooke's. Boy, am I glad we saved that! The name tag on it's collar says "Snowball Brion Owner Brooke"! We sure do miss her.
I've come across the story about The Brave Little Soul a few times lately and it so reminds me of Brooke so I am going to put that story on here to share with those of you who may have never heard it. Also, I think it's neat the blood drive coming up at school in March is in memory of Brooke and the flier says "Be Brave Like Brooke"! She was so brave and yet she had suffered enough. We have constantly been overwhelmed by the love and support everyone has shown us. Brooke was a brave little soul and she created the miracle that is told about in the story. I hope you enjoy the story and think of Brooke whenever you hear about The Brave Little Soul.
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for this day she saw suffering in the world. She approached God and sadly asked "Why do bad things happen, why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean", she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued. "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave, let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this, so I have carefully selected many souls to care for you on your journey. These souls will help you create your miracle: however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment, the brave little soul was born into the world, and through her suffering and God's strength she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant families reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle happened. God was pleased.
Tuesday, February 7, 2006 3:26 PM CST We just enjoyed another fun weekend of skiing. We met my sister and her family in Park City for the weekend. It was fun for Gavin to get to snowboard after taking lessons in CO. It's amazing how fast they pick it up. He even did some "grinding"! Nick even decided to take snowboarding lessons. I tried to keep up with Gavin and he had me a little scared a few times! (And my legs got sore this time, too!)
Another sweet 3rd grader at Picotte had a birthday party and had her friends donate to Brooke's Memorial instead of giving her birthday presents! Thanks, Nicki! These kids are amazing!
Sorry about the size of the pictures.
Monday, January 30, 2006 10:55 AM CST I put a new picture on here of Brooke with her friends Devon & Sara. Devon is one of Brooke's best friends from school and she loved his big sister Sara, too! Well, Sara had her birthday party yesterday at PE 101 and when she sent her invitations out, she included a beautiful letter she had written that requested her friends donate to Brooke's Memorial instead of buying her a birthday present. Her mom asked her, "Sara, you understand that you will come home with no presents." Her reply was "Mom, I will get the biggest present of all. I will help keep Brooke alive in everyone's heart." What an amazing girl. Gavin had a blast at the party. They gave everyone a white t-shirt with a paw print on it! They all looked so adorable. I will put new photos in the album!
We met with the principal of our school and owner of a playground eqipment company on Friday at school. We looked at where we might put something and showed him some of the things we like. He is going to send me some more info on more things that are like what we are looking at. We took Gavin out of class to participate in this little meeting. He really wants to be a part of this, and him being the kid, has some input on what we will be getting! He knows most of all what Brooke liked. The owner of the company happens to be Eric Crouch, former Husker QB and Heismann trophy winner. So Gavin was very excited about this meeting!
The PTA said they would help us do some fundraising for Brooke's Memorial Fund. We are thinking of some things to do. We have already ordered wristbands that we will be selling. They are white and say BROOKE with a paw print on each side of her name in aqua. When they come in, I will put a picture on here. We will be selling them at the blood drive on March 25 and at other school activities. We are asking for a minimum $3 donation each. You can also contact me and I will get you any that you want. Any checks can be made to the Brooke Brion Memorial Fund and sent to Nick & Darby Brion, 14816 Lake St., Omaha, NE 68116. I will gladly mail them to you if you don't live around here. I was excited about the wristbands because Brooke & I had checked into getting some and I never got around to getting them and I felt so bad about that.
We are hoping to have enough money for the piece of playground equipment we decide on and also would love to have enough to put a statue in the butterfly garden at school. We have a butterfly (flower) garden at the front of school and would love to put a bronze statue of a little girl walking her dog. You have to dream big! I really think we will be able to do this!
Thank you everyone for your continued prayers and support. Sometimes I really wish we could have Brooke back and sometimes it is so hard to believe she is gone and won't be back in her room to play with her things and wear her clothes. I have to remind myself how lucky we were to have her at all, even if only for such a short time. One day I was thinking about it, and if she stays 7 forever in heaven, maybe I'm the lucky one because when I get there I will always have a 7 year old little girl! Our time on earth is limited, but our time in heaven is forever and I will forever get to be the mother of a little girl!
Tuesday, January 24, 2006 9:29 PM CST Gavin got a small wooden box from Grandma Kirwan the other day. It is orange with a metal lid in the shape of a dragonfly. She said she had bought it for Brooke a long time ago when Brooke's favorite color was orange. That was before we got Snowball. I told Gavin he could put some small things of Brooke's in it to remember her. He didn't know what he should put in it so I told him to look around her room and that he could go through her things whenever he wanted to. (It is a very hard thing to do - I have tried it myself). A little bit later, here he came. "I found something.", he said. He held up a key. One of those keys that unlocks the doors in the house in case someone gets locked out! I told him it was perfect! When we moved into our house, there was a key like that above every door in our house. We can't find any of them any more. Brooke has them hidden all around her room. She hoarded them! Only she knows where they all are! She loved trying to get into a room if you had the door locked! And one time, when she couldn't get the door to our bedroom unlocked, she took everything out of her room and shoved it up against the door to blockade us in. She even had her Little Tikes kitchen set up against the door. I think the only thing left in her room was her bed and dresser!
At Brooke's prayer service, Father Joe told the story about the water bugs and dragonflies. Brooke had painted a picture that has dragonflies, dogs & a bunny in it. He thought she painted it after she heard the story, but she had never heard the story. Grandma had bought the box with the dragonfly lid long before any or us had heard the story. The story talks about the water bugs scurrying around and very busy at the bottom of the pond. Then one day, one of the water bugs climbed up the lily stalk. She disappeared from sight and her friends waited and waited but she didn't return. They were greatly puzzled. Then one of them said, "I have an idea. The next one who climbs up the lily stalk must promise to come back and tell us where he or she went and why." One day, not long after, the very waterbug who had suggested the plan found himself climbing up the lily stalk. He couldn't believe what he saw. A startling change had come to his old body. He had become a dragongfly. He felt exhilarated in the new atmosphere. It was by chance he looked below to the bottom of the pond. He was right above his old friends. There they were scurrying about, just as he had been doing some time before. Then the dragonfly remembered his promise to go back and tell the others where he went and why. Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. "I CAN'T return." he said in dismay. "I'll just have to wait until they become dragonflies too. Then they'll understand what happened to me and where I went. And the dragonfly winged off happily into its wonderful new world of sun and air.
Tuesday, January 17, 2006 10:22 AM CST We made it home safe and sound, with no broken bones, and still able to walk! We had a lot of fun, but that was a very hard trip to take without Brooke. I choked back a lot of tears throughout the days. One time I was sitting down and saw a girl about Brooke's age with an orange coat just like Brooke's the last time we went and she had on the exact snow goggles Brooke got for X-mas last year, but never had a chance to wear. They were silver with a rainbow band.
Gavin did awesome snowboarding. I will get new pictures on here soon. My camera is about worn out and I can't get the USB connector or whatever it's called to go in my camera. I think I need a new one! When I get that figured out, I will post the new pics. I added some more old ones in the photo album.
We had to talk Gavin into the all-day snowboarding lesson. He said he would do a 1/2 day, but they only had all day unless you took a private 1/2 day lesson. He just couldn't wait to get on the slopes! I told him they would take them to the slopes, but with the instructor. So he went. He had so much fun he wanted to do the class the next day, too! He got his same instructor and group of kids. He really liked them. One kid was from Australia and Gavin thought that was pretty cool. He really did a great job.
We also went snowmobiling, which was just beautiful. The Telluride Snowfest was going on, so they had fireworks and a torch parade one night. The torch parade was a whole bunch of skiers coming down the slope with torches in their hands following each other like a parade. Looked pretty cool! Sunday night there was a snowmobile expo where some stunt snowmobilers put on a show. They went up a ramp and did all kinds of tricks in the air on their machines!
The weather was beautiful. Saturday was so nice and the sun was shining. Sunday it snowed a beautiful snow all day and there was a lot of fresh snow to ski on.
Sunday morning we were just walking out the door to leave Chuck's house to go skiing, and laying right at the bottom of the steps was a beautiful husky dog. She had beautiful light blue eyes and Gavin and I were all over her. She was so nice. She didn't belong there, yet she was there like it was her home. To explain why this was so special, Brooke not only loved dogs, but snow dogs, especially huskies, were her all time favorite! She wanted to go on another wish trip when she relapsed and she wanted to go to Alaska to ride with the sled dogs. I told her she only got one Make-A-Wish trip, which she thought she should get two, because she got cancer "two" times. We told her we would take her to Alaska when she was better to ride with the sled dogs. That was her idea of heaven! So anyway, we thought that was pretty neat that beautiful husky was laying there waiting for us!
If you want to read a beautiful story, go to www.myshiningstar.info/news.asp. A little girl named Star lost her battle to cancer, also, and her mother put a beautiful story on her website. It's about the brave little soul.
Thank you all for continuing to check on us and for your continued prayers and support. We really need it now just as much as when Brooke was here.
I just remembered another quick story I was going to share. When we were at the airport leaving Colorado yesterday the gentleman who checked us in gave us our boarding passes and Nick handed them back and said, "There are only two here." He had to have someone come over and help him and the other guy said, "There are four of you?" We said, "Only three." That was very hard to say. He was working and looking at the screen and at the passes and would look out at us and said, "I keep thinking there are four of you."
Tuesday, January 10, 2006 8:51 PM CST We're still doing pretty good around here. We talk about Brooke a lot and I love hearing any stories about her. Gavin got out of the shower the other day and said, "You know Mom, how we always prayed to God for Brooke not to have cancer any more? Well, she doesn't have cancer any more." It must have just occurred to him that he really did answer our prayers, just not the way we wanted him to.
Tonight I took Gavin to Skateland for the school skating party and he always loves those. Brooke always loved going to those, too. She would never let Miss Fahnholz go, whether she was 4 or 7! She was always hanging on her! I will see if I can find a picture to put on here. Not sure if I had one on my digital camera there.
Nick, Gavin & I are going to take advantage of the 4 day weekend Gavin has from school. Friday we are flying to Telluride to go skiing. Gavin wants to snowboard. The last time we went there Brooke was 3 1/2 and Gavin was 6 1/2. After talking to some other parents tonight about how long it's been, I'm afraid I won't be able to walk after one day! I just hope I don't break anything. Nick's cousin lives there and his son is 10, just like Gavin, so Gavin is really excited! I'll let you know next week how bad we did! Brooke loved it and took right to it. She wasn't afraid of the big slopes! I'll see what pictures I can find from last time to put in her photo album.
Tomorrow I am going to give platelets at the Red Cross. Some people don't know what it's like to give blood or platelets, so I will explain the difference a little bit. When you go in you fill out a health history and questionairre and they do your blood pressure and a finger poke to check your blood to check your iron levels. If they are too low you get sent home. Giving blood actually only takes 5 - 15 minutes. I give really fast and almost faint, so now I give platelets and I do fine. When you give platelets you go through the screening process and then they hook you up to a machine and it takes about 1 1/2 hours. They take the blood and the machine separates the platelets out and you get the rest of the blood back. It doesn't make me feel faint or anything. So, even though it takes longer, it works better for me. You get to sit in a recliner with a warm blanket and your own TV to watch and you can bring a movie if you want to. Then you get a sandwich and whatever you want before you leave! I just know that I didn't know about all this before.
Brooke went through many, many units of blood and platelets the last couple years. It makes me feel good to give back. She always hated seeing the blood products, so we had to cover the bag and IV pole with a sheet or blanket or something so she wouldn't have to look at it. Some of the nurses on the floor were so nice, they would wrap the entire tubing in white tape for her!
The Picotte PTA is sponsoring the 1st annual Brooke Brion Blood drive at Picotte Elemtary on Sat., March 25, starting at 8 am. I will mention it again when it gets closer, but somebody might get a chance to put that on their calendar!
Wednesday, January 4, 2006 9:07 PM CST Happy New Year! We hope everyone had a safe and happy holiday season. I have to say we did pretty good. I think I have been anticipating that things are going to be so bad, then it's not as bad as I thought. I feel like Brooke is all around us. It is hard to believe she is gone. In a sense, it's almost like she is just invisible. Last year for New Year, we went to the Holiday Inn in Lincoln and took the kids and spent the night along with some other relatives. There was a party for the adults and the kids had cousins there that were old enough to babysit, so they had their own little party in the room! We would go up and down and Brooke and Jacy actually came to the adults party for a while and they thought they were SO big! We went again this year, and of course, it was different without Brooke. Brooke was more of a party animal. She had no reservations and loved to have fun and giggle! We were a little worried about her getting older! But she was also so strong that no one was ever going to tell her what to do! Peer pressure was not going to be a problem for her! She was going to do it her way no matter what.
Gavin came home from school early today. He's had a terrible cold the last couple days and last night woke up during the night a couple times thinking he might throw up, but never did. No fever either. This morning he seemed fine, so I sent him. I knew when the phone rang it was probably school! I think he'll be alright tomorrow.
I don't know why my links below don't always work, so I am going to put our address on here. Some people have requested it because they want to donate to Brooke's memorial. We feel so honored and blessed. We are planning on a new piece of playground equipment at school. Our address Nick and Darby Brion, 14816 Lake St., Omaha, NE 68116.
Thank you so much for all your continued support and prayers. You get us through the tough times and we appreciate it!
Tuesday, December 27, 2005 11:29 PM CST I know I need to update, so I just want to add a little before I get to bed. We seem to be doing fine around here. I'm more scared of "when is it really going to hit me hard?". I've been reading some books that really help. I share with Gavin parts I think he would like. I keep forgetting to take him to the Centering Corporation to get him some books for kids. The days just kind of go by and my mind just doesn't work like it should. Yet we are smiling and laughing and having fun just like we used to be able to do. I was so afraid I would never feel that way after Brooke died. I didn't know if I would be able to be happy, but it's weird how it doesn't feel like she's really gone. Even though we wish so much we could hold her again and look into her eyes and hear her voice.
I just wanted to share the story about when Gavin and I went shopping last week. Gavin wanted to go to Red Robin for lunch. I know it's because he and Brooke always liked to play the games while we waited for our food. Our waitress introduced herself, and her name was Alina. Brooke's middle name is Alyna, too. They were just spelled different. I never here that name anywhere. It sure caught my attention. Then while Gavin was off playing games I heard the people behind me talking about a dog show. I hadn't been listening, but that part I heard. Then Gavin came back to the table with 2 stuffed animals he won out of the grabber machine. He wanted another dollar because there was a Betty Boop in there he wanted to win for his art teacher because she likes Betty Boop. So I gave him another dollar and he won two more things - including Betty Boop. That kid walked out of Red Robin with the biggest smile on his face and four stuffed animals in his arms. He was beaming. I just had this feeling that Brooke was letting us know she is still around and still with us! It wasn't like I gave Gavin a lot of money to play games, either. He just won with every grab! I just hope this story puts a smile on your face and maybe helps you "believe" just a little bit more!
Wednesday, December 21, 2005 9:54 PM CST Merry Christmas from the Brion's! We are still doing pretty good. Have been keeping pretty busy. Last Saturday we celebrated Christmas with Nick's family and this Saturday we will be with my family. I've dragged Gavin into quite a bit of shopping, and he's been a real sport about it! Today, Gavin and I went to the movie "Cheaper by the Dozen, 2". We both really liked it. Tomorrow we are going to lunch with Abby and Kristi Bridgewater, our friends from the hospital. Abby is the same age as Brooke and is being treated for leukemia. We are then headed up to the cabin until Saturday. Next week we are going to do some fun things with cousins who will also be off school. Thanks again for checking on us and keeping us in your prayers. We are really missing Brooke and I think when the holidays wind down, it is going to get a lot harder before it can get better.
Thursday, December 15, 2005 8:53 PM CST Gavin went back to school today and was glad to be back with his friends. I don't think Mom & Grandma are near as fun! I thought Brooke's friends would appreciate hearing about a gift Brooke got on Friday after she passed away. There was a huge box at the door and it was from Nickelodeon. There was a big basket in there full of Nickelodeon toys and things. The special thing was an autographed picture to Brooke from the cast of "Drake & Josh". She loved that show. Her favorite character was Megan because she was so good at getting her brothers! I know she would have loved it. I have no idea how they found out about Brooke.
For Brooke's memorial we would like to get a new piece of playground equipment for the school playground. Brooke always thought they needed some more fun stuff there. Her friends could then play on it and know it was from Brooke. Also, the school is in our neighborhood and when the cousins come to our house we could go to school and play on it. We are grateful for the memorials we have received. If anyone is interested in contributing to her memorial fund you can send it to our home. We haven't set up an account yet. Our address is Nick & Darby Brion, 14816 Lake St., Omaha, NE 68116.
I have been trying to put some new pictures on this home page, but am not having any luck. For some reason I feel like maybe Brooke doesn't want those pictures there and is blocking them! I have never had any trouble with that before! So I thought I would try the picture of the flowers that came in the shape of Snowball because I know she must have LOVED those! But that didn't work either, so I will have to keep trying. Maybe I can get them in the photo album!
Tuesday, December 13, 2005 9:51 PM CST We have once again been overwhelmed by all your support and prayers and reaching out. THANK YOU!
Brooke's prayer service and funeral mass went very well. People talked about Brooke and told stories about her at her prayer service and it was very special. I thought mass was very neat because the children's choir sang, and those sweet little voices made it so special. It was a beautiful day for it being Dec. 12. The sun was shining and there was only a small breeze and the temperature wasn't too bad. The flowers were/are beautiful!
Of course we dearly miss Brooke, but what she was going through the last few months was way harder on her than our pain. Gavin is doing extremely well, also. Keep those prayers coming, because I know that is what is getting us through right now.
Gavin & I say we picture Brooke running and playing out in the sunshine in a prairie with flowers and with her long blonde hair and strong legs. She is in white and playing and laughing with all the children and animals and helping out with the smaller children. I'm sure she has sat on Jesus' lap many times already!
Our neighbors surprised us with a beautiful painting of Brooke that their friend who is an artist painted. Her name is Mary Sneed and she did a beautiful job. I will try to take a picture of it and put it on here in the next couple days. What a wonderful gift that we will treasure forever! Thank you, Reilly's!
We still haven't finalized what we might do for a memorial. We have a good idea if we find out it will be ok. I will let you know when we make that decision.
Thank you again for all your prayers and support. Thank you to those of you who attended Brooke's prayer service or funeral. You have all touched our hearts in a special way as we know Brooke has yours.
Friday, December 9, 2005 2:07 PM CST Brooke's services willl be Monday, Dec. 12, at 1:30pm at St. Vincent de Paul Catholic Church on 144th and Maple in Omaha. Burial will follow at Resurrection cemetary on 78th and Center. Sunday there will be a wake service at Heafey, Heafey & Hoffman funeral home on 78th and Center at 7pm. Visitation at the funeral home will be Sunday from 4-8 with family there from 6-8.
Thursday, December 8, 2005 3:57 PM CST The Angels were here this morning and Brooke went home to heaven. We will be missing her until we get to see here again.
I will update with notice of her services when we figure that out - probably tomorrow afternoon we will know more.
Thank you again for all your prayers. You are sustaining us and have no idea how much it means to us.
Tuesday, December 6, 2005 11:05 AM CST Brooke has been pretty busy. Monday night, Santa stopped by and visited Brooke and Gavin. Boy, were they surprised! I hope everyone was being good in the neighborhood, because he was out and about checking on everyone! He also gave them some gifts while he was here. They got some neat books and Brooke got some ornaments for her tree and a new puppy. Gavin got a 20 questions game and Brooke got an I-dog and together they got a chocolate fountain! So guess what we will be eating tonight?! Santa read a couple stories and he left Brooke his gloves to take care of for him! Brooke was so tired, she could barely open her eyes. She layed on the couch and Santa sat next to her and she let him hold her hand. But she heard everything and took a peek when she could!
I took her in for platelets yesterday and will probably take her in for blood tomorrow. She had a bloody nose on Sunday and through the night. My sister was here and my sister-in-law brought us chicken noodle soup on Sunday and they went and did some Christmas shopping for me. They also helped us get our other tree decorated and other things out.
Saturday morning Brooke told me she wasn't staying home all day! Of course you know were she wanted to go! I actually had to tell her we couldn't go to Build-A-Bear because the mall would be too busy on Sat. and it would be too loud for her and she would not have enjoyed herself. We did something else instead. We went to the Pottery Place and Brooke painted a cat and a turtle and Gavin painted a couple dragons. She also wanted to check out a couple shops! So we went in to Gallery Classics and she saw a plaque she wanted, so I got it for her. It says "Trust in the Lord with All Your Heart" Prov. 3:5. She also picked up a couple gifts and then was ready to go home.
Thank you for checking on us and for your encouraging messages you leave us. Gavin and Brooke have been getting mail from around the country and have been loving it! It is amazing to see where it comes from and how much people care that we haven't even met! Thank you for ALL your prayers and support that has come in so many ways. We appreciate and love you all so much!
Friday, December 2, 2005 7:36 PM CST We've had a busy week. Brooke got platelets Tuesday and today and she got blood on Wednesday. She hasn't been complaining about her head anymore, but it's usually an ache somewhere else. Today she has done pretty well actually. She doesn't really have a difference between day and night anymore though, beings she just sleeps on and off. She wants to eat at about 11:30pm and usually at 3:30 am! I'm just thrilled she wants to eat!
She had a pretty good day Thursday. She wanted to go to Build-A-Bear again, so of course we went! On the way home she wanted McDonald's and ate 1/2 her hamburger. I was afraid she was going to get sick eating that much at once! She also wanted to go sit in the snow and play in it, so we did that. She filled her own bowl of fresh snow to eat and has been really enjoying eating lots of snow lately. Gavin told me it's suppose to snow 1-3" tonight and they are so excited!
Monday, November 28, 2005 7:38 PM CST Brooke is not feeling well today. Her head is hurting and she is telling me she wants to go in to the hospital and that she needs an MRI and a CAT scan. How do you tell her they won't do one for her? Yesterday she got another bloody nose and we had to take her in to get platelets and blood, so we spent all day at the hospital. Tomorrow I am going to take her back for platelets and maybe more blood. Her hemoglobin was only 4.7 and they forgot to tell me what her platelets were at. I'm going to plan on taking her in again Friday, before the weekend. She obviously can't go too long without those platelets.
Brooke has really been wanting it to snow so she sould eat some. Today she wanted a blue slushy from DQ because she thought it might taste a little like snow! We haven't gotten much, but enough that Gavin and I got her some snow in a bowl and gave her a spoon and she ate quite a bit!
I guess the weather is bad back home where we grew up north of O'Neill, right on the SD border. I grew up on the same farm as my grandparents and my Grandma passed away yesterday. I don't think we'll try to make it back to the funeral. It will be hard either way. I grew up close to both sets of grandparents which was absolutely wonderful.
We did have a nice Thanksgiving at Nick's mom's. Brooke stayed all day. She wouldn't leave until the boys left, too. It was a little loud for her so she spent most of the day in the spare bedroom watching cartoons on TV.
Once she got a taste of Build-A-Bear last week, she couldn't get enough. We went Monday, Wednesday, & Friday! Friday she wasn't feeling so good and I knew there would be a lot of people there, but she asked ALL day to go, so we finally went in the evening. She didn't have as much fun that time with more people there and the noise. She did pick out some new Christmas ornaments in Younkers. She also spotted their white tree and white is her favorite color, so Nick went and got her a white tree we put up in the family room. She hasn't felt like decorating it though. She may have to just tell us where to put the ornaments. She hasn't let us do that yet either though.
Thanks again for all your prayers and help. We have the most wonderful friends and family. We love you all. Please remember to give blood and platelets and please also keep all our cancer kid friends in your prayers, also. Lauren, Dylan, Abby, Ethan, & Elissa are just a few of our friends from the hospital. The list is just way too long.
Wednesday, November 23, 2005 10:44 AM CST Happy Thanksgiving from our family to yours! Gavin has the day off school today and was really excited about that! We are going to Nick's Mom's for Thanksgiving day. She is only about 10 min. away, which is great because I don't think Brooke is going to last too long over there. The noise is what bothers her and there will be a lot of people there. But then again, you never know. We can come home whenever she wants.
Yesterday I took her to clinic and she got platelets. They were 11 thousand again. Her hemoglobin was 9.1, so they didn't give her blood. It took a while to get some platelets, so I wanted to remind everyone to please go give blood and platelets. Everyone gets so busy with the holidays, yet the need is still there.
Brooke has been complaining of pain, even though we doubled her patch. Her tummy hurts she says along with most other places. Poor thing. The Dr. said she could go back on the pump, but she doesn't want to do that.
Even though she doesn't feel too hot, Monday she wanted to go to Build-A-Bear! I was so excited to hear that! The last time we had been there she got Nikki's bear III. The NIkki's bear is named after a girl named Nikki who passed away from childhood cancer and the store donates money from the sales. The guy who works there asked her if she had I and II. We said no. He told me I could order II on the internet still, but the 1st one was not available anymore. BUT, he had an unstuffed one at home that he wanted to give Brooke. He told her he would have it at the store for her anytime she wanted to come back and stuff it. Well, I didn't know if she would ever make it back. It is so cute and she had a lot of fun stuffing it. She named it Angel Bear. It has the gold ribbon on the bottom of it's foot for childhood cancer. I just ordered the 2nd one, so hopefully she will feel like stuffing it when it comes. So if you ever go to Build-A-Bear, tell Matthew that you know Brooke and how much she loves her bear!
Thursday, November 17, 2005 10:02 PM CST This week has been pretty quiet. No more bloody noses - yeah! All your prayers really work! We have enjoyed the beautiful snow! When you stay home most of the time it really is beautiful scenery out the window! We did get out in it Tuesday a while though! Gavin started a snowman in the front yard, but only got the bottom ball finished!
Brooke woke up a couple times during the night last night needing some more pain medicine, so tomorrow they are bringing me patches with more medicine in them. As of this morning Brooke still had her packing in her nose that was suppose to stay in for 2 days. That means it should have been out Monday! She was afraid to take it out thinking it was going to start bleeding again, so I told her she could go ahead and wait and I took her in to Children's today to get her counts checked. It probably would have bled - her platelets were only 11 and her hemoglobin was 7.
I'm hoping she will feel a little better tomorrow, now. Brooke has been wanting to go to the school library to check out some books beings she hasn't gotten to go to library check-out with her class, so I want to take her tomorrow to do that.
Sorry I don't update every day. It's nice when I don't really have anything to report! We do appreciate your guestbook messages and all the prayers and support. You are all definitely holding us up. Some days I can't believe how good we are doing and I know it is coming from all your prayers. Don't get me wrong, Brooke feels pretty tough a lot of the time, but we will never give up hope for Brooke's miracle.
Sunday, November 13, 2005 2:19 PM CST The rest of last week wasn't too exciting. Brooke did some errands with me when she felt like it, but the end of the week wasn't feeling too hot. Sat. morning she woke up with a bloody nose and it lasted all day. We tried everything and everything the hospice nurse could think of. Finally we took her to Urgent care and the Dr. put something in her nose and it stopped while we were there. Of course it started again on the way home so we headed to the ER. The Dr. used something different there and that didn't work either. So he called the ENT and was told to put epi and lidocaine in for a while and then pack it. She still has the packing in and it still bleeds a little bit around it. It is so hard for her not to touch it, but she is doing a very good job. It bothers her and the worse part is probably that the blood just backflows in your throat and she can feel a clot back there. They checked her blood and of course her platelets were low and her hemoglobin was only 6. So we went ahead and spent the night and got platelets and blood. We were home by noon today, so that wasn't too bad. Beings she has been feeling fine and eating well, I am going to have her counts checked again this week some time and get her blood and platelets. She doesn't need to be having problems like this and feeling crummy when some blood and platelets can make a world of a difference. So that's a big reminder to go give platelets and blood! The need is amazing. Thank you for your prayers and support. Please pray Brooke's bloody nose doesn't come back and for more good days ahead and also for all our cancer friends.
Monday, November 7, 2005 6:59 PM CST Today was a beautiful day out so we went to the zoo. Brooke did very well until she fell trying to get out of the wagon to ride the carousel and then she was ready to go home "right now". The carousel made it better. We also went to the Imax movie "Safari 3D". Last night we went to "Chicken Little" and the kids talked me into playing some video games at the theater. I usually don't care for that, but was simply thrilled that Brooke wanted to and did play some games!
Saturday Grandpa and Grandma Kirwan came and we layed pretty low. Had some cousins over yesterday.
Friday when the nurse came to change Brooke's needle, she decided to try the patch instead. That has been a wonderful change. Now she isn't hooked up to the pump and isn't on morphine - it is Fentanyl. Let's just say the morphine made her a little "edgy", which is not fun. She even cried one day and said, "Everyone's going to think I'm mean." She seems to be feeling much better in that sense. She has morphine drops if she needs a little boost.
Thank you again for checking on us and for all your prayers and support and all the ways everyone has been helping us out.
Friday, November 4, 2005 9:13 AM CST Brooke's been actually feeling pretty good. Wednesday we went to a wonderful horse farm and Brooke and Gavin got to ride a horse! I didn't know if Brooke would be able to or not, but thought she could at least pet them and brush them. She did great though! Yesterday we went to the movie "Dreamer". I can't believe how good she is feeling. She has started to complain about headaches sometimes though and I don't like that. After she went horseback riding, she stayed unhooked from her morphine all day - her choice. Today she has to get her needle changed, which is not fun at all, but we will get it over with before the weekend.
Thanks again for keeping us in your prayers and for all your support!
Monday, October 31, 2005 9:16 PM CST Happy Halloween from the Brion's. We got to dress up in our family costumes Brooke had picked out for us. Snowball had one too, but isn't as cooperative! Brooke had a full day and has got to be tired! This afternoon she spent time with me in the kitchen and even colored me a picture. Tonight we got all dressed up and went trick-or-treating. We hit over a dozen houses and I think she would have went farther! I was SO glad she was up to it. Last night we carved pumpkins and a couple uncles got into the action, also! Our front step looked pretty good! Thanks again for all your prayers and support. You are lifiting us up and we had a fun day today!
Sunday, October 30, 2005 9:09 AM CST We got home Tuesday just fine and hospice came. We went up to our cabin Thursday night and came home Saturday evening. It was nice to get away and do something "normal" for us to do. Brooke did just fine. I thought the trees were going to be so pretty, but they have already lost their leaves. It is just so peaceful and quiet there though. Last night a couple cousins spent the night. Brooke asked them to. But then this morning she was sad because the kids were all in the basement having fun and she can't play with them. That's what really breaks my heart.
Thanks for all the love you are all showing us. It is overwhelming. We so appreciate everything.
Monday, October 24, 2005 9:01 PM CDT Brooke's been having a pretty peaceful day today. She has had lots of visitors and nurses from 5th floor (where we use to always stay, but now she is a big girl!)stop by to say hi. We are going home tomorrow and planning on having hospice help us out so we can be home.
The doctors have let us know there's not much more they can do for Brooke. Her kidney chemistries have sky rocketed and her liver is not doing so well either. The blood in her urine is much better today. She is on a morphine pump to help control her pain. She doesn't have much pain unless she tries to move which she does very little of. This is all very hard to accept, but it is in God's hands and not our choice. If we could wish her back to health she'd be running marathons by now.
Thank you for keeping us in your prayers and for leaving messages in the guestbook. That does so much for us. This web site has been an amazing source of comfort and communication for us. I can't imagine going through this without all the support of our family and friends.
Sunday, October 23, 2005 8:16 PM CDT Things aren't going so good for Brooke right now. Saturday night she went potty before bed and it was VERY bloody. She new I was going to call the Dr., so she locked herself in the bathroom. The Dr. new she was on fluids at home already and didn't know if there was much they could do, so she said just to call in if it happened again. Well, she soaked 4 pull-ups through the night that all looked the same, so when we got up this morning I called in and we came up to the hospital. Brooke was a little more prepared then. So far there hasn't been an improvement in the blood in the urine as far as I can tell. Her counts of course plummeted through the night so she got platelets and whole blood and they are going to give her plasma which she has never gotten before. Her liver clotting factors aren't doing what they should be doing. I could tell it was her liver because her eyes were jaundice today. They are also giving her many other things and we will have to see what the morning brings. I don't know what else to say. All your prayers are appreciated so much.
Saturday, October 22, 2005 6:51 PM CDT Brooke seemed much better Thursday night and Friday without the morphine. Then it hit her Friday night. The pain started in her L foot and worked its way up her leg until eventually everything hurt. She really complained about her tummy and was miserable ALL night and got NO sleep. Nick & I had to take turns. So early Sat. morning I realized we were going to have to go to the ER. We spent 1/2 the day there.
They did CT scans and x-rays. Nothing new was found and it wasn't appendicitis. I was so worried there was going to be something new there because this seemed to me a new pain. So she came home on morphine and IV fluids again. The morphine makes her sick to her stomach and not hungry, so I hate that part of it. We will be back to clinic on Monday to start up the chemo again.
Thursday, October 20, 2005 6:32 PM CDT Tuesday night Brooke came down with a 102.5 fever. The Dr. said we could wait to come in Wed. morning because her counts aren't that bad. They took blood and did cultures which have come back negative, thank God! Her hemoglobin was down to 8, so she got blood today when we went in. Her fever has stayed around 100. She hasn't been feeling the best, but REALLY wanted to have her needle out and wanted to leave it out for the weekend. I told her I can't give her any pain medicine if she's not accessed unless she would take some tylenol, to which she replied, "Yuck!". She is very determined though, so she came home without any needles in! I figured it was a good night to try it beings tomorrow is Friday and we can always go back in and get her re-accessed if we need to. I can always call home health to come out over the weekend, too. So far she has still stayed in the chair all afternoon and took a nap. She is more alert without the morphine. She complained about her leg once, but then it went away. She's hungry, but whatever I seem to make her doesn't taste good. I really want to try to get her in the tub. I may have to force that again, but I know it will feel good and she will have fun once she gets in there.
The reason she really wants to be unaccessed for the weekend is because we are invited to a costume party Saturday night and we are dressing up as a family. She doesn't want her needle under her costume. I hope she feels good enough to go for a while. When the costumes came, Gavin said he never wanted to dress up as a family and wasn't wearing the stupid costume, so Brooke started to cry because she had her heart set on it and picked them out. Gavin changed his mind after he started trying on and decided it wasn't so bad. Brooke told him not to worry, we'd make Dad look like the geek! I will post new pictures next week if we can pull this off!
Monday, October 17, 2005 10:04 AM CDT Not really too much to report this morning. Brooke continued to feel a little better each day last week, then the weekend came and she hasn't been feeling very good. We got out of the house a little last week which I think was very good for her but also wore her out. Friday she got to go to school late in the afternoon for her class's popcorn & pop party. I stayed with her and she moved really slow, but I think she really liked being in the school and seeing her class. When we got to the hospital Friday morning, she threw up and then on the way home from the hospital she threw up again, so she must have really wanted to go. It didn't stop her.
This chemo isn't as hard on her blood counts, but it sure does seem to make her sick. We have the diarrhea under control for now(until she starts back up next week) but the Zofran she gets for nausea just doesn't quite cut it, so now I have to give her Ativan sometimes, also. Her legs started hurting again this weekend, so I had to start giving her morphine again. Her lower R chin has been numb and now the left side feels funny, she said. That is probably from the chemo, too.
It took her a while to remember this morning that we don't have to go to the hospital today. That in itself kind of perked her up! But now she is sleeping because the Ativan makes her really tired. She didn't eat too well this weekend but this morning she's already had a brownie and some milk! I don't care what she eats or when right now! She just needs the calories!
We do have to go to the hospital one day this week to get her flu shot and her needle changed. Of course she picked Thursday so she can see her dog friends that come visit! Dr. G said, "But I'm not here on Thursday. Don't you want to see me?" And she just gave him that look like "Are you stupid?"!
Going to clinic has been working out well. It is nice to see some of our new and old friends that come in while we are there. Not too many old ones anymore and you can pick out the new families. I wish they could just go out of business up there! I remember clearly what it was like when we first starting going there. I couldn't believe we were in a cancer clinic for kids and I couldn't believe one of my kids was going to get to go to cancer camp in the summer. Now it is just our life. It doesn't really make it any easier though. Anyway, I have been rambling on. Thanks again for all the prayers and support and for checking on us!
P.S. Thank you to Brooke's 2nd grade class and some of the teachers for the jokes on the video Mrs. Kraegel made for her! She finally felt like watching it and we really enjoyed it. Maybe we will watch it again today! She was reading me jokes this morning out of her joke books!
Tuesday, October 11, 2005 11:01 PM CDT Brooke started her 2nd week of Irinotecan chemo on Monday and we are doing this as outpatient visits this week. Now we are constantly trying to keep up with the immodium to try to keep ahead of the diarrhea. We are very tired of this already. (Sore bottom and getting the pills down) She gets next week off and then 2 more weeks of the same. Really dreading that.
Brooke is feeling a 'little' better each day. Monday when we went in I told them how worried I was about her anorexia. And that is exactly what I would call it. She hadn't barely eaten anything at all the last couple weeks. When they weighed her she only weighed 44 lbs. and it wasn't that long ago I remember her being 54 lbs. I can't believe how they don't seem to get too concerned about that. I told Brooke they were going to have to put a feeding tube in if she didn't start eating. I was going to make them if she didn't. Well, the last couple days she has started taking a few bites of things, so it is at least a start. I keep trying to come up with things that might appeal to her, but when chemo makes everything taste like metal, and your tummy doesn't feel good, it's really hard.
I can tell she is feeling a little better though. She hasn't had any pain medicine for anything for a long time. Yesterday she was watching the Zach & Cody marathon all day and was singing the theme song at the start of each show. About 9:00 at night she said she might feel like doing a little bit of her homework! She couldn't even think about that last week. And she has even mentioned going to school! That would be SO good for her! I'm hoping next week she might be able to go a little. It will depend on her blood counts. Even if she could just go for a while, it would be good.
It has been working out good going to clinic for treatment and then coming home. Today we got to see some of our friends. Hopefully tomorrow we will get to see Abby again. Thanks again for checking on us and for all your prayers and support.
Friday, October 7, 2005 8:59 PM CDT We made it home about 4:00 today. Brooke started having a lot more cramping and diarrhea that went on through the night, so they started her on immodium. The problem is getting her to take it. They wouldn't let her leave the hospital until she took some. I really thought we were going to have to stay there. I couldn't get her to take it, so the nurses tried to force it down her and of course she threw up. I knew that would happen. She finally took it for me, but no one else could be in the room! This is the main side effect of her new chemo, irinotecan. The diarrhea is better now that she is taking the immodium. She still gets some cramping sometimes. She knows if she doesn't take it she will have to go back to the hospital. She is also on fluids for the weekend so she doesn't get dehydrated. The only thing I don't like about that is then all she wants to do is sit in the chair because of the tubing and backpack. She is definitely feeling a little better, though. We go back Monday for another week of chemo. Depending on how the weekend goes, we will have to decide if we will do it out- or inpatient. They both have their pros and cons.
Thursday, October 6, 2005 10:28 PM CDT Just wanted to let everyone know the week is winding down and Brooke is actually starting to feel a little better. She's not doing cartwheels or anything, but there has been some improvement. Her fever is staying away and I think that is making all the difference in the world. She didn't ask for any pain medicine today! I knew the fever was just making everything worse.
Today was the day for a needle change. Brooke HATES that! So after putting that off for most of the day, we finally got it out. I knew it was my only opportunity to get her a bath while the needle was out. I can't even tell you the last time she had a bath! I physically had to put her in the bathtub with a lot of screaming and crying, "I don't want to take a bath!" Gavin went to the gift shop and bought her some bath beads and I went and found some tub toys in the playroom, and after about an hour in the tub she still wasn't ready to get out! And that right arm she had been complaining about sure was getting a lot of use! And the best part was she smelled so good when she got out!!!!
She hasn't complained about her ears at all today! She has had some nausea and stomach cramping from the chemo. She still isn't eating, but tonight somebody mentioned hot chocolate and she thought that sounded good and drank about a 1/2 cup of that!
We finally just got her new needle back in, so she had a nice break from being hooked up. Now she is getting blood because her hemoglobin was low. She hates getting blood. The nurses did a great job bringing it in all covered up with a blanket and she wasn't paying any attention until she looked down and saw them hooking it up and saw the blood in the tube! But they have it all covered up so she forgets about it.
She'll get her chemo again in the morning and then we should get to go home at a decent time. My sister came from Oklahoma yesterday to stay a few days. It is great having her here. Thanks to her friends and husband for letting her come and leave 3 kids at home! She is a great help and has been making some phone calls and stuff for me that I have a hard time doing. So today my brother stopped by and Grandpa & Grandma took the day off and came for the day. So today was a pretty busy day. It made it go fast. Our new friends from Sioux City were here today with McKenna getting her port out today. Way to go McKenna! And thanks for stopping by, Lisa! Brooke loves the dog!
Thank you again for all your prayers and support. We are getting through this day by day and know it won't last forever, even though it seems that way at times.
Tuesday, October 4, 2005 11:52 AM CDT Brooke is in room 617. She has been sleeping most of the afternoon. Her temp is better, it was 99.3 when they took it. I am still not too sure about them starting chemo back up. I think her body needs to recover more. It's just hard to see her having such a tough time right now. I know she will get back on track, I just don't want this to make it tougher.
Well, we came home Monday still discouraged. Brooke is still running a fever. Her temp fluctuates. Her ears are still sensitive so they did a CT scan of her mastoid bone behind her ears to make sure there wasn't something going on there causing her pain. That came out fine though. I get so nervous when they do any of those tests. You never know what they are going to find.
They decided to start up her chemo again. They changed it to a different one. They were going to admit us for the week, but Brooke started crying because she didn't get to tell Snowball good-bye! So they let us come home for the night beings she is on IV fluids at home anyway. Now we will go back today and be admitted for the rest of the week. They usually do this chemo outpatient, but are going to admit Brooke because of her not feeling well. We are really slow getting up there today. Brooke slept in until 11:20, so I decided we'd just wait and go after lunch. She doesn't like to get up and go straight there. She needs her Snowball and home time first!
Thanks for checking on us and for the encouraging guestbook messages. They really help! Thanks for all your prayers and support!
Sunday, October 2, 2005 6:46 PM CDT Well, I just took Brooke's temp and it is 104.5. I can't wait to go to clinic in the morning to see what they say. Friday we went in and the Dr. thought her ears looked pretty good, but they are very sensitive. She thinks we are yelling and wants us to whisper. So Dr. G sent us to the ENT to have her looked at. The ENT thought her ears looked fine, too and didn't have and explanation for the sensitivity or fevers. I didn't think he would, but was hoping for some kind of answer. So to say the least, this has been another very long weekend. She is one miserable little girl right now.
Thursday, September 29, 2005 6:23 PM CDT Brooke still has a fever and is still very miserable. She needs the morphine on a regular basis and can't even hardly walk. This is NO fun at all. She is still complaining of her one ear, too. She finished the Vancomycin last night and they are giving her another antibiotic in clinic. We will go again tomorrow to get that again and also a unit of blood because her hemoglobin was down to 8.7 today. We have to use the wheelchair at the hospital because I can't carry her that far and that's how bad her legs hurt. Nobody seems to know what is wrong. This is very frustrating and getting very old.
We also just found out that when it is time for a stem cell or bone marrow transplant we will have to go out of town. UNMC isn't an approved pediatric stem cell or bone marrow center by our insurance company. We don't know when that will be for sure, but now we need to figure out where we will go and start getting in touch with some other oncologists. Children's here is our 2nd home, besides being so convenient for us, we know we have been very blessed this way. That will be a hard thing - especially for Brooke. Everyone here knows how Brooke is and how she likes things done. You've never seen so much patience!
Gavin had a little excitement today at school. There was a mountain lion siting near our neighborhood this morning, so they didn't let the kids go outside at all today. I had to pick Gavin up after school, they weren't letting any kids walk home. So the first thing he wanted to do when he got home was see if he could go outside and spot it. He went over to the neighbors and Brooke was really worried about him!
Thanks for checking on us. I hope I can report some better news REAL soon. Please pray for Brooke's fever to go away and stay away, she needs to get back on her chemo. She is weeks overdue. Thanks again for all your prayers and support.
Tuesday, September 27, 2005 2:01 PM CDT Today Brooke seems just a little better. Her fever got to 104 last night but was down to 101 this morning at home. In clinic it was like 99.6. She went from 6:30 - 12:30 without morphine. She's sleeping now. We went to clinic and Dr. G said one ear looked better but the other one still looked "boggy". Whatever that is. She has walked a little more today. Her leg starts shaking sometimes. I'm starting to think she may be having an adverse reaction to the Vancomycin. Tomorrow is her last scheduled day for it, so I will be anxious to see how she does off it.
Monday, September 26, 2005 2:49 PM CDT Brooke didn't get admitted today. She has had a really rough weekend. She started running fevers again and today, when we were at clinic, it was 102.9. She complained about her ears this morning, Dr. G took a look and said they didn't look very good and added another antibiotic that they gave her in clinic. We will go back tomorrow and Wed. for more and he will check her ears again. Hopefully Wed. she will be able to start chemo. Her legs started bothering her on Sat. and they hurt so bad during the night, she (and I) got no sleep. She was no better Sunday, so I had to call and get her some morphine I can give her through her port. She can barely walk, so I had to get a wheelchair to get her up to clinic. It breaks my heart to see her feeling so bad. She keeps asking me why I'm crying and I just can't help it. She usually races me up to clinic. Please pray she starts feeling better soon.
Friday was the best day she's had in a while. She got to see her friend Molly at clinic. They hadn't seen each other since camp. Molly gave Brooke the biggest watermelon I have ever see. Gavin calls it a MollyMelon! It really perked Brooke up to see Molly and she felt better the rest of the day. I thought she was going to have a good weekend, but you just never know.
Thursday, September 22, 2005 10:13 PM CDT Brooke got her new port Wednesday and we got home about 7:30 pm. We were SO happy to be home, even if it is for only 4 days. Brooke is to be admitted Monday for her 5 days of chemo. Brooke is really sore today and hasn't wanted to move too much. Of course she won't take any tylenol for me, so today I was wishing I would have asked for some IV morphine to give her this morning. The more she sits around the sorer she gets. She is also on the Vancomycin again twice a day.
Tonight at school we had open house and the book fair. Brooke wanted to go to that,even though she was walking crooked from sitting in the chair all day! It was good for her to get moving and take her mind off it. Grandma got to go with us and the kids had fun showing her their rooms. My Mom came yesterday to stay a couple nights, which was really nice. After the open house, Nick & I got to go out to eat with Nick's brother and wife. So that was really a treat. Tomorrow we probably need to go to clinic to have Brooke's dressing changed from after her surgery. I will call them in the morning to see what they say. If we do go, we are hoping to see Brooke's friend Molly. She will be at clinic for her check-up. They haven't seen each other since camp.
Our friend Abby got to go home yesterday when we did, but I just checked her site and she had some more problems and is back in already. Please keep Abby in your prayers, too, along with all the other kids fighting this horrible disease. It makes our 4 days off sound a whole lot better. It has been a rough couple weeks for Brooke and Abby. Like I said Brooke is moving really slow today and boy did she lose some weight after not eating for more than a week. 6 lbs is alot on a little girl. She gets hungry, but not much sounds good. I'm hoping I can get her to eat good this weekend before she starts up chemo again.
Thanks again for checking on us and for all your prayers and support.
*NEW photos in album*
Monday, September 19, 2005 2:29 PM CDT Brooke's fever has stayed away all weekend pretty much. So she has started feeling better and started eating a little, but still not in too good a mood because she's been here so long. I'm trying to get her out of bed, but she doesn't even want to sit up. She did get blood on Saturday, also.
Sunday, the nurses ordered pizza and Brooke and Abby and a couple other oncology kids on the floor had a party in the playroom. Brooke ate a whole piece of pizza! I couldn't believe she actually went! Thank you nurses! What a great idea! And thanks for the pizza!
We are now just waiting for a surgery consultation to see when we can put her new port in. Yes, I did say port! I've hated her central line since the moment she got it and that was so they could do a stem cell harvest. Well, she isn't even close to that yet, so we are going for a port this time. Now Brooke wants a line back so she won't have to be poked, but the port is so much better. She won't have the ends hanging out under her shirt and worrying about them getting dirty. Wednesday is the earliest they will let her get her new port, but it will depend on when the surgeons can get her in. The hospital has been short a surgeon for quite some time. There use to be three, but now there's only two. I hope we don't have to wait too long or that they put her in at the end of the day - beings she won't be able to eat or drink. Not that's she's been eating much, but when you can't have something, that's when you really want it!
Friday, September 16, 2005 11:53 AM CDT Brooke's still in the hospital and STILL fighting off her fever. This morning it seems better, but yesterday I thought the same thing and she was still up to 102 last night. She's still whiny today - her hemoglobin is low and she will probably get blood tomorrow. She hasn't been eating very well or drinking much.
Her blood cultures have all been negative except the one taken in the ER on Sunday and then the blood they took Wed. night was positive. Everyone is a little baffled.
Brooke had her MRI's done while we are here. The skull tumor is looking better - smaller than it was in July. The bone scans showed some lesions gone but some the same. Dr. G wants to check those out more and talk to the radiologist about it. She was really complaining about her right leg the beginning of the week, but not the last couple days.
Brooke is really wanting to go home. She doesn't do much other than watch TV and we read books. She has her IV in her hand and she treats that like it is paralyzed. She's so afraid the IV will come out and they will have to put a new one in. It's hard to do things with one hand. The IV bothers her when they put her antibiotics through. It seems to burn her arm. She was really screaming about it in the middle of the night and I thought they were going to have to redo it. They put some warm packs on it and that seems to help and once she went back to sleep she was fine. They have to get her blood from her other arm every day at 6am. What a way to wake up in the morning. She's really ready to have a line back.
Brooke met another little girl in the room next door. She is 7 also and her name is Abby. She has leukemia. She runs around the halls at night squirting the nurses! Abby sent Brooke a note the other day that said "Please come out"! It was so cute! Brooke can't leave her room with her fever. Hopefully soon Brooke will be feeling better and the girls can play. They could even do school together if Brooke's fever would go away. I think it's nice for the kids to see other kids here going through similar situations.
Thanks again for checking on us. We really love your messages and thank you for all your prayers and support!
Monday, September 12, 2005 9:11 PM CDT Brooke got checked into the hospital today, but not for chemo. She woke up Sunday saying her arms and legs hurt. As the day went on, she started to develop a fever and felt worse and worse. She stayed at an aunt & uncle's while I took Gavin to his football game. (He played a great game and his team won 42-0!) When I picked her up her fever was high enough we had to come to the emergency room and get her checked out. Her counts were OK, so they let us go home. They took blood to do cultures, but those take at least 12 hours to get results back.
This morning we came in and they said the cultures were positive, so they started her on antibiotics right away. This afternoon we had to do the dreaded line removal. She did much better than I thought she would. They used local anesthetic to numb around her line and then the surgeon took his time to get it out. There was a lot of tugging and only a little crying and screaming. She didn't watch, so she did alright. Tonight she is just miserable with her fever staying above 102. She is so stubborn and won't take any tylenol. If we tried to force it she would just throw it up anyway, so she is keeping a wet wash cloth on her head and one on her right thigh. She is really complaining about her leg hurting. Hopefully the antibiotics will be able to bring her fever down soon so she starts to feel better. She just wants to go home.
We are getting really tired of cancer. It sucks. I just felt like putting that on here. No child should ever have to go through all this, and yet, I know there are actually worse things. I can't imagine. Thanks for all your prayers and support. Thanks for signing the guestbook so we know you've been here! We love reading your messages!
Friday, September 9, 2005 4:57 PM CDT I took Brooke in for her counts this morning and she didn't need any transfusions! Yeah! She got to school a little after 11:00. We studied her spelling words all morning in case she would make it in time for her spelling test, but she didn't! She was glad! She had some hard words, but I think she had them down by the time she got there!
Thursday was Brooke's first full day of school. Wednesday she was late because we had to finish her last dose of Vancomycin. It was also the 1st day of CCD. That was a big day. She had to be tired.
Thursday night we made it to the Candlelighter's picnic out at Cooper Farms. That is always fun and it was a beautiful night out.
Monday, Brooke is being admitted for another week of chemo. The next week they have an MRI scheduled to check her skull. Dr. G doesn't want to put her through the bone marrow aspirate yet, so not sure when they'll check that. I'm not really ready for another week of inpatient. It seems like we've been there so much lately. At least we do get to come home once in a while and Brooke is feeling really good. I also know how lucky we are to live in Omaha and not have to travel as far as some families. It helps keep things a little more normal for Gavin now that school has started.
Thanks for checking on us and for all your prayers and support!
Sunday, September 4, 2005 11:15 AM CDT Brooke did get home on Wednesday night! We have been very busy - sorry I haven't updated sooner. Brooke is on Vancomycin antibiotic twice a day and it takes an hour to give with a pump. She had platelets on Tuesday and again on Wed. before we left. Friday when they checked, she didn't need anything and we go back Tuesday to check again. Please go give blood or platelets if you can. I know there is a shortage right now.
Thursday and Friday we had to go back to the hospital to finish up radiation treatments. They sent her mask home with her on Friday! That was a good feeling. She hasn't been able to go back to school, yet. Maybe Tuesday afternoon or Wednesday.
Saturday we went to Lincoln to tailgate and for the FB game. That was a lot of fun. Very hot, though. Brooke doesn't care. She just likes doing normal things and being out of the hospital! Her dressing came off her line while we were there and I didn't have a kit in the car, so I had to run her to the emergency room to have that changed. It has never come off before and that was a lesson for me to keep an extra kit in the car.
Today and tomorrow we are going to try to find some fun things to do around town. Gavin's birthday is tomorrow and he is going to be 10! He is very pumped about that!
Thanks for checking on us and for all your prayers and support!
Tuesday, August 30, 2005 9:26 PM CDT Well, we're still in the hospital. I guess we get to go home tomorrow after radiation which isn't until noon. They switched Brooke's antibiotic and her last dose was at 4:00 and it takes an hour to give. Then they needed to do blood chemistry's on it to check the dosage and it was going to take a while for those results. They couldn't send us home yet until they have that all figured out beings I will be giving it to her at home every 12 hours. Brooke actually took the news better than I thought she would!
Grandma came the other day so that has been really nice. I've been able to get out of here to get Gavin after school and run some errands. Tonight Nick and I went golfing while Grandma stayed with Brooke. That was a really nice break. Brooke told me that Grandma "made her go for a walk". Then I found out that meant Brooke actually ran the batteries out of both the jeep AND the motorcycle while Grandma had to keep up with the IV pole! Gavin got to go fishing with a couple uncles and a cousin tonight. I haven't heard yet if he caught anything. I think we're still in summer mode! Can't wait to get home, though. This is night #7 after only being home for 5 days after the last 5 day stay.
Monday, August 29, 2005 8:48 PM CDT Brooke is still in the hospital, but it looks like she may get to go home tomorrow! It has been a long week. Thank you for all the prayers, it also looks like they won't be taking Brooke's line out! I am so excited about that! Her cultures have been coming back negative and she has been fever free for a few days now. We will be going home on IV antibiotics for 7 - 10 days, but I can do that at home. She will probably need platelets tomorrow before we leave.
Sunday, Brooke had some friends come visit and the kids sure had a lot of fun. Devon tied his loose tooth to the door with some floss to see if it would come out, but that didn't work! So Gavin saved the day and pulled it out for him "because Gavin knows the trick to it - the twist and pull!"! Not just a twist and not just a pull: it's a twist/pull! Now Devon and Brooke both have a toothless grin!
Brooke finally got out of bed Sunday evening. I told her she should put a mask on and we could go for a walk around the halls. She said she'd wouldn't put her mask on for a walk, but she would ride something. So I asked the nurse if they had anything she could ride on and they had just gotten some new things "10 minutes ago"! So Brooke rode the motorized jeep around and around while I kept up with the pole! She got some of the nurses to race her in the wheelchair! She was having a ball! Then she decided the playroom did look like fun. They usually close it at 8:00 but told her she could play as long as she wanted, so we were in there from 8 - 9:30. Once I got her out of the room she wouldn't go back!
Today she was very tired and whiny a lot. Definitely ready to get out of here. Radiation is continuing as planned. I'm so glad we've been able to keep on schedule with that. Thanks again for checking on us and also for all your prayers!
Thursday, August 25, 2005 7:09 PM CDT Update Friday, August 26, 2005
Cultures have come back positive in both of Brooke's lines and it will have to be removed. The antibiotics are keeping her fever down now and the Dr. would like to wait until her counts are better before removing the line. Brooke barely has a white count and needs a platelet transfusion today. She is going to have to try to take a Benadryl before that because last time she got platelets she broke out into hives. If she won't take the Benadryl they can give it to her in her IV, but then she will sleep all afternoon. I hope she gets it down. They did an echocardiogram of her heart this morning which looked fine and also got her 5th radiation treatment finished. It has been a busy day so far. We will be here until sometime next week for sure.
Thursday August 25
Brooke came down with a fever Wednesday night after that big 1st day of school. (She got in a whole 3 hours!) That gave her a direct admit through the emergency room at 11:30 pm. That was after a lot of crying and screaming of "Don't take my temperature - I'm fine!", and then "NO! Don't call the Dr. - I don't WANT to go to the hospital!" I gave her a little time to settle down while I packed. Who knows how long we'll be here. Her fever was down today, but the last check was 100.2. We just got a test back that one of her lines tested positive with bacteria. I hope it's something the antibiotics can take care of and that they don't have to pull her line out. I've heard that's very unpleasant because they take it out without anesthetic. I'm thinking maybe if it has to be removed they could do it when she's out already for radiation. I'll find out more tomorrow.
This morning they still did Brooke's radiation. Her temp was below 100 and they figured it would be OK. It's mild anesthetic and she's not out for very long. I hope they can do it again tomorrow and keep things on schedule. We're here anyway, might as well get it finished.
Poor Gavin was upset we had to come back to the hospital so soon. His birthday is Labor Day so we're trying to come up with something fun we can do. I think he's been feeling a little neglected but would never say anything. He's such a good kid. I can't believe he's going to be 10. He's pretty thrilled about that!
I'll try to update tomorrow when I get a better idea of what kind of infection this is and what we will be doing about it. Brooke is in room 515 and her # is 955-3515.
Wednesday, August 24, 2005 4:06 PM CDT Today was the 1st day of school!! Brooke got to go the 1st 2 hours and the last hour. She started her radiation treatments on Monday. She also needed blood on Monday, so that was a very long day. Tomorrow they will check her counts again. She may need platelets.
Brooke's radiation treatments have been changed from 20 to 10. That was good news. She goes daily until finished. After Friday we will be 1/2 finished already! She is being put to sleep for these. Yesterday and today we thought maybe we could get her to try without, but she's just not interested in trying that at all. I think they put her in a very uncomfortable position and it also "hurts her nose", she said. That's alright. I'm not going to ask her anymore about it. The anesthesia they use is light, so she wakes up in a good mood and ready to eat!
Saturday, August 20, 2005 12:34 AM CDT Brooke got dismissed from the hospital Friday at 6pm. She actually had a pretty good week. Didn't throw up once and got out of bed almost every day (except Friday)! Now we will start her daily neupogen shots until her counts come back up.
We found out we are starting radiation treatments on Monday. They have her scheduled for 20 treatments. They will be daily until finished. They are going to put her out due to the positioning. Most treatments are in the morning, so I hope she'll feel good enough to go to school in the afternoon. Wednesday is the first day of school. I am going to ask them if she can skip that one, but if they don't, that one is scheduled for noon so she should be able to at least go the first hour or two. Monday night is safe walk to school night and meet your teacher. She is looking forward to that.
Monday, August 15, 2005 6:29 PM CDT Brooke got admitted today for her 5 days of chemo. She is in room 505 and her phone number is 955-3950. We just figured out how to get the internet in our room on the laptop and are very excited about that!
We had a good week last week not having to come to clinic all the time for blood checks. Monday was the only day we were up here. The rest of the week the kids had some cousins spend a couple nights at our house and we tried to do a couple fun things like putt-putt and stuff. Thursday night we went to the movie "Charlie and the Chocolate Factory" with the Candlelighters group and In the Arms of Friends paid our admission and treats for everyone! Thank you In the Arms of Friends! That was a nice treat! One night, Snowball even had some dog friends over to play! Rowdy & Coco came over and we also got to see baby Aidan. Thanks Christy! Snowball liked having some dogs to play with beings our house has been taken over by the kitty and Snowball still isn't too happy about that!
We went to Gross,NE (pop. 4 or 5 I think - maybe not that many)! It is close to Spencer and Butte where Nick & I grew up and we bought some land there with a couple of Nick's brothers and are puting a cabin there. It is a great hunting, fishing & boating area and we are looking forward to being able to spend some time there. It is very close to the Ft. Randall Dam in SD. The cabin is almost finished and we needed to go do some (LOTS) of varnishing.
Gavin & Brooke also got to spend time with Grandpa & Grandma. On Sunday they went to my Aunt Jana's and had a blast playing with lots and lots of puppies. They got to see Snowball's Mom and cousins and thought that was so cool! My Aunt raises dogs and even let them hold some brand new puppies that didn't even have their eyes open yet! They had so much fun! So that was nice before we had to check in for the week!
Monday, August 8, 2005 3:36 PM CDT Brooke went in today for a blood check. She didn't need anything and gets to stop her neupogen shots for now. Yeah! Last week we were at the hospital every day except Tuesday. She got platelets twice and blood once. I was glad she didn't need platelets today. When she got them on Friday she broke out in hives and they had to give her IV Benadryl. It put her right to sleep and she slept from 4:30 until I woke her up at 8:00. I only woke her up because we were going to run over to Grandma's for a few minutes or I think she may have slept all night!
Wednesday we went to Methodist to meet with the Radiation Oncologist. I thought we were going to find out the plan, but they needed to do the planning. They were going to take pictures and make Brooke's mask she needs to wear for radiation treatments. She didn't have that last time because it was to her abdomen. This time it is her skull. Well, Brooke wasn't mentally prepared for this and it didn't go so well. They decided to position her face down and make the mask on the back of her head. We finally got her talked into laying face down, but when they put the molding on the back of her head and hooked it down, Brooke started screaming and screaming. So they took it off. We went back Thursday and had to have Brooke put out to get this all done. So now they are thinking she will need to be put out for her treatments, but I think we will need to let her try it without and maybe have the anesthesiologist ready if she needs it. Brooke hates being put to sleep. And now that the mask is made and the planning will be finished, she may be able to handle it long enough to do the treatment.
Next week will be round 4 of inpatient chemo. Brooke should be admitted Monday for 5 days. Radiation will then start after that. I'm not sure if it's the week right after or if they let her counts drop and come back up first. I just want to make sure she gets to at least go to the 1st day of school which is Aug. 24 for my kids.
Snowball still doesn't like the kitty. We have to keep them separated. We did get the kitty declawed last week. We did it right away. I didn't want Brooke getting all scratched up.
Saturday, July 30, 2005 1:53 PM CDT Brooke got out of the hospital Wednesday night and it was sure nice to get home. We have been staying pretty close to home. After being gone so much I just don't even feel like going anywhere. Just trying to get things back in order around here. Brooke got her room painted, so everything got pulled out of there. I've started going through it. I just don't want to throw everything back in there. She has more stuffed animals than ToysRUs! She's attached to them all and knows where she got everything, who it's from and why she got it. If she can't part with anything yet, it can at least go to the basement family room.
Monday we go in for a blood check. Tuesday we have other things to get done, including taking our new kitten to the vet. Yes! That's right, we got a new kitten. Snowball is not very happy about this and so has been spending a lot of time outside. He can only come in if the cat is locked in the bathroom. I hope things improve or we may not be able to keep the kitty. His name is Little Tiger.
Wednesday Brooke has an appointment with the radiation oncologist for some planning and probably some more pictures. We will find out what the radiation plan is when we go then. I'm sure Brooke will need more blood checks throughout the week and will surely need some platelets or blood. She really doesn't like that. It grosses her out and makes her gag at the thought of it. So hopefully she won't need too much.
We bought a few school supplies last night. We're not ready for school to start yet. I think it's because we didn't really get a summer. Gavin's had fun spending alot of time at other people's houses, but I think that's the only reason I will be ready for school. A little more normalcy around here and a schedule and we'll get to see more of Gavin. It is nice Brooke hasn't been missing school. The kids just found out who their teachers are going to be. Brooke will have Mrs. Kraegel and Gavin will have Mrs. Urban. I'm sure they are ready to see their friends!
Sunday, July 24, 2005 11:38 AM CDT Tuesday: Brooke's fever stayed away yesterday so they started chemo again last night. She got her last antibiotics today and will get chemo again today and tomorrow. Not sure if we will get to come home Wed, night or Thurs. sometime.
Brooke is in room 507 and the phone number is 955-3507. She got admitted Saturday, but we haven't continued chemo yet because she had a fever. They put her on antibiotics and did some cultures, which the results aren't back yet. Her fever is much better - was like 99.6 today. Was up to over 102 yesterday. Hopefully it isn't much and they can get back to the chemo as soon as possible.
We did outpatient chemo on Thursday and Friday and Brooke went home with her IV in a backpack pump. That was nice that we could be home in the evening, but those were 2 very long days in the clinic and long nights for me. I had to keep setting my alarm to get up to have her go to the bathroom every 2 hours and to give Brooke her Zofran every 6 hours. I actually slept better at the hospital last night! It looks like we'll be here longer than originally planned and Brooke is not very happy about that at all. Hopefully not too long though. I'll try to keep this updated to let you know.
Sunday, July 17, 2005 5:53 PM CDT Boy are we trying to cram our summer into this week! Beings Brooke didn't start chemo, it is like a week off! She is feeling good and we didn't have to go in for blood checks.
We dropped Brooke off at camp this morning at 10 am. She was so wound up and excited. She has the same girls in her cabin she had last year and was very happy to see her friends. Camp COHOLO will be posting pictures of the kids at camp on their website in the photo gallery if you would like to see what Brooke is up to! The parents LOVE this!!
Friday night we went to KC and saw our new niece. Boy, is she sweet! We couldn't get enough of her! Can't wait to see her again. We took in Worlds of Fun on Saturday and didn't get home until midnight. Thursday, I took the kids and some cousins to the new InPlay downtown Omaha. It was for a fundraiser for In the Arms of Friends. Today was their day, but you could use your ticket in the 2 weeks if you couldn't go today. We went early so Brooke could go. The kids had a lot of fun. We're having some painting done in the house and Brooke wants to redo her bedroom. She knows what she wants so we just need to get busy. Gavin and I have some fun planned for the next couple days. I drug him to the mall today and he was a real sport! (Got the complaining out of the way early!) We are going to the movie tonight!
Anyway, check out the camp COHOLO link below to see how Brooke is doing. If the link doesn't work, you can go to www.campcoholo.com. We pick her up Wednesday morning. She will be starting chemo again Thursday.
Friday, July 8, 2005 9:55 AM CDT Update: Wed. July 13, 2005
As you can see by Brooke's entry below, we had a fun time at Pancake Days in Butte, NE (my home town: population 450). There was a parade and carnival and other fun things going on. We got to see so many people and the great Grandmas, too. Hi Hannah & Zach Headley!
Brooke had a couple headaches the end of last week. On Friday she had one when she woke up, then at lunch time she had one and took 2 bites of her lunch and threw up. I called the Dr. and instead of starting chemo on Monday they wanted to do another MRI. I was so nervous. Monday afternoon Brooke had her MRI and Tuesday morning Dr. G called and said it looked better. He said it would be OK to wait and start chemo next week after camp. Beings we know the tumor is responding to the chemo we have a consultation with the radiologist oncologist to find out what the radiation treatment will be.
Brooke is feeling really good right now. Her counts are good and she hasn't had chemo for a couple weeks. I am so excited she will be feeling so good for camp. We drop her off at Camp COHOLO on Sunday morning and pick her up on Wednesday. She is very excited to go! I am trying to think of some fun things for us to do with just Gavin. He really needs some Mom & Dad time for himself. I think we'll be doing some swimming beings Brooke can't really go swimming.
This Friday, we are going to try to head to Kansas City to see our new niece/cousin Lillian Morgan. She was born June 26 and we haven't got to see her yet. We can't wait to see her! We will head home Saturday night. Brooke is worried about getting to camp! We can't be late!
Brooke's entry:
Pancake Days was really fun! I won 6 animals! I gave one to Payton and Tess. I gots lots of candy at the parade. Then when we went to Gage and Garrett's house to get the car, we saw a dog that was walking by. His name was Max. That's the dog on the picture. She showed us where his house was and he has a trampoline and the dog loves to jump on the trampoline and I can come over there whenever I want to! And I can jump on the trampoline with Max! Then I went to Chase & Meghan's house and Gavin spent the night there and Gracie was smelling me. Then when we got home to see Snowball he went WILD! He was so excited to see me and he was smelling me like crazy! When I saw Max, the owner, Michelle, let me play with him for a long time and Max had a ball and we played catch. Then the dog across the street came over to play with Max and they are good friends. Then Max had to finish his walk. That's all. Love, Brooke
Sunday, July 3, 2005 11:59 AM CDT Happy 4th of July! We are having a nice weekend staying around Omaha. We are doing a lot of golfing and the kids are having fun with cousins and spending the night at each others houses back and forth. We will be in Lincoln on the 4th for a BBQ and fireworks at Nick's brothers house.
Brooke had her blood checked on Friday and her ANC was less than 1. Therefore we won't be going too far! She did need platelets and had also gotten blood last Tuesday. We will be back Tuesday for another blood check.
The ribbon cutting we went to last weekend was very nice. Brooke did an excellent job and there were a few other kids from Children's there, also. There were a lot of people and delicious food! Brooke really liked the chocolate fountain you could dip strawberries and marshmallows in! We got to see Paige, who we haven't seen in a very long time! When Paige and Brooke didn't have hair at the same time, everyone always got them confused! Brooke still gets called "Paige" sometimes!
Gavin once again wanted to shave his head for Brooke! He had a lot of fun getting it done! You'll have to check out the photos!
Hope everyone has a fun and safe 4th of July!
Saturday, June 25, 2005 10:52 PM CDT We got home Friday night. Brooke had a pretty good week. She only threw up once. She has a hard time getting her Bactrim pills down, but has been a real trooper about it this time. It takes her so much water that she got sick trying to get it all down. Friday was Snowball's birthday, so we had to stop on the way home for Brooke to buy him a new toy! She still wants to have some of Snowball's dog friends over sometime for a birthday party for Snowball!
Brooke had some friends, cousins and teachers visit throughout the week which really helps make the week go faster. Watch out if you come to visit sometime. I left to get Gavin on Thursday and when I came back, Brooke was squirting everyone with syringes filled with water! She was trying to make it look like they wet their pants. She did get Dena pretty good! Thanks for starting something, Jaquelin!!
Nick & Gavin left today and will be back tomorrow night. Brooke was upset we didn't go with them. So we had a fun girls night out. First we went to the Lux Pet Boutique and bought Snowball a new collar and some fancy treats for his birthday! Brooke thought that was pretty fun. Then we went to eat with Aunt Gina and cousin Jillian. Brooke & I then went to the movie "Herbie, Fully Loaded" at Village Point. We then took a very nice carriage ride and the owner, Diane, even let Brooke drive an extra ride. The horse's name is Chase and Brooke loved every minute of it. Diane wouldn't let us pay her of course, even though we took up so much of her time. People are so nice, there are angels in disguise around every corner. I know we get overwhelmed at how good everyone is to us.
Tomorrow (Sunday) Brooke is invited to the ribbon cutting at Creative Hair Design Salon. They called and asked her to represent Children's. I told them she doesn't have any hair! I didn't know what they were planning on doing! They said that was OK! I think they are raising money to donate for buying wigs or something. I'll find out more when we go, I guess!
We will be in clinic alot this week for blood checks and transfusions. Anisa said to plan on spending the day there Tuesday. Brooke will be due for another round of chemo the week of the 11th if her counts are good enough. Brooke got her packet for Camp CoHoLo and was pretty excited about it! That is the 17th-20th. Anisa said they will get her there and I have no doubt. Anisa will make sure of it! Thanks, Anisa!
Friday, I went to Haley's memorial service. What a beautiful tribute to such a beautiful girl. There were hundreds of red, white and blue balloons and people wore red, white and blue, Haley's favorite colors. There were also baseball caps and visors! Just like Haley wanted!
Thank you for all the prayers and support. You all help lighten our burden. We appreciate it so much!
Tuesday, June 21, 2005 10:42 AM CDT Brooke got admitted Monday for her 5 days of chemo. She has been in a very good mood and doing fine for now. I think she has a much better outlook this week because she knew she was going to be here and was mentally prepared. She got to play with Snowball before we came up and give him a big hug goodbye. We brought lots of new birthday things with us and she played, played, played yesterday. She also went to the playroom for an hour and wants to go back today. She gets to make chocolate chip cookies today. "The messy kind" is what she told Jen! Not the refrigerated dough you just break apart like Mom makes! Right now she is in her room making a "mobile" with Nancy who comes in from The Joslyn Art Museum and does projects with the kids sometimes. It sure helps when she is feeling good and feels like doing things.
Gavin spent yesterday with cousins and golfed. He is spending today with them, too. Wednesday and Thursday he gets to hang out with an "old" friend from 1st grade who goes to another school now! Friday he is going to spend with another friend. I think he is really having a fun summer getting to hang out and play all the time!
I hadn't been on the computer yet this morning when a friend called up to Brooke's room and said she was sorry about our friend Haley. My heart just sunk. I haven't told Brooke yet that Haley passed away. I'm not sure when I will do that. Haley really was the most amazing girl. Our prayers go out to her family and friends. She has the most wonderful family. You can check out her site through her link below.
If any of Brooke's friends would like to call her or visit her, we are in room 514 and the phone number is 955-3514. Thanks, Darby
Monday, June 13, 2005 8:46 PM CDT UPDATE Saturday, June 18, 2005
Brooke had her MRI on Friday to check the tumor on her skull. Anisa called and said she didn't have a written report, but the verbal report was that it looked better. That was good news to hear before the weekend. It must be responding to the chemo. Brooke will be admitted Monday for a week of chemo.
We had a good weekend. Friday we just stayed home. Saturday was the Relay for Life. It ended up being a beautiful night for it. Brooke was pretty whiny all day Saturday and for a while after we got to the Relay, but then somehow she got a second wind and played hard all night. The kids had a lot of fun.
Sunday Brooke thought it was pretty cool to try to freak people out by pulling chunks of hair out all over her head. So then I figured I better cut the long parts short. Now she has a patchwork head and looks like a doll that has had some of the hair pulled out and the rest cut short. Today we had to go to clinic to get her blood checked and I made her wear a hat. She didn't really want to but I told her she was going to scare other little kids we might see at the hospital. It really is very scary looking right now. We spent the day at clinic. Brooke needed platelets and it took forever for them to get them.
Brooke gets to stop her Neupogen shots for now. She has to start taking Bactrim 3 days a week. We are going to try the pills and break them up to see if she can swallow them. She gags on the liquid. If she can't get the pills down, there is a breathing treatment they can give her once a month. She didn't think that sounded very good. This is all to prevent pneumonia.
Brooke has an MRI of her head scheduled for 7am Friday. Then the plan is to start her next round of chemo on Monday. We may get to do this as an outpatient. Brooke would still have to be on IV fluids, but we could go to clinic to get the chemo every day, then come home and Brooke would have a backpack with her IV fluids in it.
We saw our friend Dylan at clinic today with his mom, Rachel. We used to always see them in clinic. Well, I was so sorry to hear it wasn't just for a check-up, Dylan has just relapsed also and started his new chemo today. We will be seeing a lot of them again. It's not how you want to run into friends again, I'll tell you that.
Please, please pray for Haley. She needs the whole world on her side right now. You can visit her at www.caringbridge.org/ne/haleygirl. She is the sweetest thing you could ever meet.
Friday, June 10, 2005 2:04 PM CDT Brooke got to come home yesterday on her birthday. The doctor was being nice. Her counts had barely moved up, but they did go in the right direction at least. She hadn't had a fever for a couple days and was feeling good, just waiting to go home. She had a very nice birthday.
We came home and some of our awesome friends/neighbors had a surprise party for her. They brought over cupcakes, ice cream, juicies, plates, spoons & presents! Boy was Brooke surprised! Thank you Matthew, Nicholas, Abbey, Connor, Chris, Sarah, Emily, & Anthony! We had a great time! Then we ordered pizza for supper and invited the cousins, Aunts & Uncles, and grandparents to come over if they could. We had a great turnout and Brooke had quite a birthday!
Today we are staying home and trying to keep a lower profile! Mrs. Loges stopped by with gifts for Gavin & Brooke from the teachers at Picotte Elementary. The kids are having fun with all their new stuff! Thank you!
Brooke will go in Monday to get her blood checked again. She had platelets yesterday before we left the hospital. The plan that I know so far is for Brooke to have another MRI of her brain on Friday next week to check that tumor and then start another 5 day round of chemo on Monday the 20th. I'm sure that will depend on if her counts are good enough to start then.
Thanks again for all your prayers and support. We live in such a wonderful community. Everyone is so generous and so willing to help in any way. We really appreciate everything!
Monday, June 6, 2005 3:45 PM CDT Just a quick update. Brooke had a good weekend playing a lot and feeling good. Sunday she got a fever so off we went to the emergency room. Her counts are really low. She got platelets this morning and will probably need blood tomorrow. She is feeling OK though, she said I could run home for a little bit while the volunteer is playing a game with her. I think she just really wanted to talk to Snowball on the phone and she knew I would let her! Hopefully she can get rid of her fever and her counts will start coming up real soon. Her birthday is Thursday and she really wants to be out of there! I don't blame her! Thanks for all your prayers and support!
Wednesday, June 1, 2005 10:29 PM CDT We did get home from the hospital last night (Tuesday). Brooke's spirits lifted as the days got closer to the day we could go home. The first couple days were real bummers with not wanting to be there and some throwing up and not feeling very good. She was sore after surgery. It really sucked being there over the holiday weekend. Brooke did have quite a few visitors and that helped the time go faster.
Today the home health nurse came to show us how to flush out her lines every day so they don't clot. We had to start the daily neupogen shots, also and the nurse changed her dressing on her new line. That will need to be done weekly. All that took 1 1/2 hours to do. Brooke is the master staller and then I finally had to just hold her down and let the nurse do it. The adhesive on the dressing is the worst to remove and then her skin is all red from it and it has to be cleaned with a solution that I am sure has alcohol in it, so it burns. I would scream too. I'm sure that skin there will toughen up and she will eventually get more used to it, but no one should even have to get use to this kind of stuff.
Today I took the kids to a zoo day camp that I had signed them up for a long time ago. I ended up spending the day with them too, not sure how Brooke would do. She did fine but did get tired toward the end of the day. Tonight we went to Grandma's for cake and ice cream for cousin Kayla's birthday today. A couple uncle's birthdays are today and tomorrow and Brooke's birthday is next week, so we kind of combined them all.
Thanks for all the prayers and support. It's been a very long month. Friday Brooke will go in for a blood check to see if she needs any transfusions yet. The chemo destroys the platelets and red blood cells.
Last Thursday at school, the Army National Guard came to Brooke's classroom and surprised her with a "Young Hero" award. All these little kiddos that go through so much deserve these awards they give them. I think Brooke was pretty proud of it. She wore her medal the rest of the day!
Friday June 3, 2005
We went to clinic this morning to get Brooke's blood checked. She didn't need any transfusions, yet. Yeah! We were there a long time. That place was extremely busy today. Brooke got to spend time in the library with Valerie, whom she loves. We also ran into her friend Emma from Lincoln that she went to Camp CoHoLo with last year. They are the same age and were in the same cabin together. That was a nice treat and helped Brooke get excited about going to camp again. Molly was another of their bunkmates last year. Brooke is worried about going to camp now that she has the central line and can't go swimming, but I know they will let her do as much as possible and that she will have a blast. That is coming the end of July. Last year she was asking if she could go back again before we even left the place! We go back to clinic on Monday to get her blood checked again.
Saturday, May 28, 2005 11:21 AM CDT Brooke's surgery went well yesterday. They put her new central line in and did bone samples and bone marrow aspirates. The bone marrow showed tumor cells in it. Dr. G said the pathology samples from the tumor in her skull don't match the cells from either her R kidney or her L kidney, but they are going to treat it as Wilm's. So Brooke got admitted after surgery and started the 5 day chemo cycle they are going to run. It is Topetecan and Cytoxin. She had received Cytoxin before, but not Topetecan. Stem cell is out of the question right now because the bone marrow is not clean. Brooke was very upset about being admitted. We thought we were going home after surgery and she really wanted to see Snowball. Brooke really isn't feeling very good. She is stiff and sore from the surgery and throwing up and upset stomach from the chemo. She also has a fever this morning. She really is feeling tough and it is so hard to see her go through this.
Wednesday, May 25, 2005 9:02 PM CDT Brooke did an excellent job for her MRI this morning. It took about an hour. She watched more of the movie she started watching the other day: Homeward Bound. Then she just had to get a finger poke for a blood test. Then we came home. She didn't want to go to school so I let her stay home. She took a very long nap in the afternoon. Tuesday had been a big day. She went to school all day, then we went swimming and she went to her friends house to play a little. Her MRI this morning was at 7 am, so no wonder she was tired.
After Gavin came home today we went swimming with her kindergarten teacher at her indoor pool at her apartment. That was a lot of fun and we plan on doing that again tomorrow and hoping her 1st grade teacher and her 2 little boys will be able to swim with us. Her teacher stopped by today for a little but didn't have her suit with her!
They rescheduled Brooke's surgery for Friday morning at 11:30 instead of tomorrow at 4:30. That will be better. Tomorrow the 1st grade are going to the park for a picnic. Now Brooke will be able to eat lunch with them.
Her MRI didn't come back very good today. It showed something going on in her bones in her arms and legs. Not sure what yet. They still don't know about the pathology on the tumor from her head yet either. It's so frustrating not having any answers and feeling so helpless. When they put Brooke out, they are going to get a bone marrow sample and some bone samples from each hip. I haven't told Brooke that yet. Now that she is such a good little reader, she likes to check her website and guestbook entries. Thanks for all the prayers and encouraging messages.
Monday, May 23, 2005 3:30 PM CDT Last Thursday i saw there wos a new dog from Brooke.
Well, we saw Dr. Gnarra today. All I can think right now is this is going to be a very LONG year. The biopsy has been sent out and the pathology is so different, they're not 100% sure yet that it is Wilm's for sure. Whatever the pathology is determines the chemo Brooke will get. She already had some of the strongest chemo last year. She may need one from St. Jude's and if that is the one, Dr. G said it would be better to go there and get it rather than have them figure the chemistry there, but administer the chemo here because of the turn around time. Of course we will go wherever we need to.
Wednesday Brooke will have the MRI to check all her bones and some bloodwork done. The surgeons need to place a central line instead of a port. That will probably be done by the end of the week and hopefully chemo started. The central line has a bigger return than the port and they need that to harvest stem cells for a probable stem cell transplant after chemo wipes everything out. With a central line, the tubes actually are exposed so the dressing needs changed every other day and it has to be kept very clean. So I told Brooke I would take her swimming every day this week because I don't think there will be any swimming allowed with a central line. We're lucky Grandma Brion has a neighborhood pool that the kids discovered last night is open already and the water is heated! So that is where we are headed as soon as we get ready !
Thank you for all the prayers, phone calls, e-mails, and guestbook entries. Your support means so much to us and we love you all so much.
Monday, May 16, 2005 3:51 PM CDT Well, I wish I didn't have anything to update, but I'm afraid I do. Brooke has been having headaches for over a week now, so she had an MRI done this morning. I just talked to Dr. Abromowitch and she said there is something there. She is going to have Dr. Puccioni look at it and we need to go back in the morning to find out what we can do about this. I will update when I know more.
Tuesday May 17, 2005
We saw Dr. Puccioni this morning. He showed us were Brooke's tumor is and you can feel it on the crown of her head. It is in the worst possible spot it could be in. The tumor has grown through the bone and is either pushing on the cavity in that area or may have invaded that area already. It is about the size of a large gumball I would say. Thursday Brooke will have a biopsy done and we will go from there after we get the results from the biopsy back. Hopefully it is something that can be treated with radiation and possibly chemo. If not, it will have to be removed. They wouldn't know how involved that might be until they got in there. So we will be praying for the best.
Thursday May 19
We had a very long day today. We had to be at the hospital at 7am for Brooke's CT scan. She had to drink the contrast for that and it had to be long enough time from her surgery because she wasn't suppose to eat or drink before they put her out. She did very well. After the scan, we went up to clinic to see the dogs because it was Thursday and we hadn't seen the dogs for a very long time! That made the day a whole lot better! We got Gavin to school about 11:00 and then we had to be back to the hospital at 1:00. They took her beck for the surgery/biopsy about 3:00. She did very well and we got home about 7pm. The incision is 2 1/2 inches long. She is feeling very well right now, but may be sore in the morning. She really wants to go to school tomorrow because it is the big day for the 1st grade plays and Brooke has a very big part in which she plays the dog!
Saturday
Brooke made it to her play on Friday as you can see by the new pictures. She didn't go to school though, just to her play. She felt good when she woke up, but then her head started to hurt, so she stayed home most of the day. She did very good for her play, she wasn't shy about it at all. Before we left to go to school she didn't want to comb her hair because it would hurt and I said that was fine, but then she didn't want to go and started crying because she thought she would look "stupid". Then her teacher called just at the right time and told her she would be just fine! Then I asked her if she wanted to make her nose black like a dog and she started having fun getting her face all made up for the play. She did it herself!
She woke up in the night again with a headache, but this time also her leg was hurting. She was crying and actually wanted to go to the hospital it hurt so bad. So now I am very worried about that. We are to go to clinic on Monday to see Dr. Gnarra. Will let you know what we find out.
Friday, April 29, 2005 5:29 PM CDT Brooke had another great check-up today! Yeah! It was just an easy one, in and out! Except now we can't get out of there because Brooke wants to play with all the new games and toys in clinic!
Things are winding down around here with the last day of school being May 27. Brooke had her last Spanish class, Religious Ed classes are over and only 2 more karate classes left! I am so excited for summer this year. I think because the last 2 summers we spent 1/2 of each at the hospital.
The American Cancer Society Relay for Life is coming up on June 11. We are team captain for Children's Hospital Team 1. Last year, Brooke was in the hospital and didn't get to go. So it should be fun this year with the whole family going! We need to raise money for our team. If you would like to make a donation you can send it to our home or go to www.acsevents.org/millardwest and go to our team and member name to make a donation online. We really appreciate it!
Another great fundraiser coming up is for In the Arms of Friends on June 5. It is at the new InPlay here in Omaha. For only $20 you get an all day free gaming pass and a $20 game card redeemable after the grand opening! $10 from your ticket goes to helping children with cancer right here in Omaha! For tickets call 891-1879(Kellie), 763-9294(Liz) or go to www.inthearmsoffriends.org. Thank you for supporting this great organization!
Please keep our friend Haley in your prayers along with all the other kiddos battling this horrible disease called cancer. A little friend, Jessica, we knew from 5th floor at the hospital, just lost her battle with neuroblastoma this week. If you would like to send her family some words of encouragement, her site is www.caringbridge.org/ne/jessica.
Sunday, April 10, 2005 8:15 PM CDT Happy Spring! We hope everyone is enjoying the time change and the signs of the season! We sure are! Today we tried to golf, but we got soaked! We had a nice Easter at Nick's Mom's with some of the family. Gavin & Brooke have been on spring break since they got out of school early on March 31. They will be back in school tomorrow.
We stuck around Omaha for the most part and did things around here. We did spend one night in Albion at my folks' house. The kids and I got in the car Thursday to head out of town and we weren't even out of the neighborhood and Brooke asks, "Who wants to play cards? I brought the card shuffler!" The she asks, "Who wants to play spoons? But, we have to have 3 players because I only brought 2 spoons!" You never know what she has in her suitcase! And that's why we let her take her own! Anyway we had a lot of fun at Grandpa & Grandma's house and it was a treat for them to have the kids there during the week!
This Saturday, April 16, In the Arms of Friends is having a huge garage sale to raise money. I'm talking huge! They are even encouraging pre-shopping, so let me know if you would be interested. I'm going to try to go a couple evenings to help set up, but I can't on Tues. or Wed. Let me know if you would like to go early. It is at 17264 Washington St. in Mission Park off 168th and Q St. You can click on the link below for more info.
I almost forgot to add that the Children's Hospital Foundation is holding their radiothon the 14th - 16th on Kat 103.7 radio station here in Omaha. They will be interviewing Brooke on Thursday at 4pm if you would like to tune in!
Please say some extra prayers for our friend Haley who will be 12 tomorrow(April 11)! Happy Birthday, Haley!!! We love you!!!
Friday, March 18, 2005 2:21 PM CST I had a good chacup today i had lunch with Cristy hogin
Brooke
As you can see, Brooke had her check-up with Dr. Gnarra today. She had her ultrasounds and they looked good! Yeah!!! We also got to eat lunch with our friend Christy Hogan! Brooke didn't want to go back to school for a little bit this afternoon - she wasn't 100 ure they had the spelling test yet and she didn't want to have to take the test because we didn't study very good this week!
We've been busy around here. Last Saturday night, we spent the night at the zoo in the gorilla complex. It was a cub scout sleepover and Gavin is in cub scouts. Then our cousins from Oklahoma were here for a few days while they were on spring break this week. They got to visit Brooke & Gavin's school and eat lunch and go to recess. They thought that was fun. Brooke got sick Tuesday and came home from school early with a fever. So she didn't get to go to the movie or Chuck-E-Cheese with the gang. I kept her home Wed., though she was already feeling better. Monday night the kids all had fun at the school skating party! We are now packing and getting ready to go to Kansas City for the weekend!
Brooke's next check-up will be in 6 weeks and her next ultrasounds in 3 months!
Saturday, March 5, 2005 8:30 AM CST Not much new around here to report. I love it! Brooke is busy re-arranging some Easter decorations I just got out yesterday. That will keep her busy until we put them away after Easter! I just heard her over in the corner playing with one of them: "I wish I may. I wish I...whatever"! She couldn't remember how it goes!!!
I finally feel like I am getting caught up around here after spending so much time at the hospital when Brooke was sick. It is a good feeling. I have some projects to get going on now. I am also one of the team captains for the Children's Hospital Relay for Life team. We are going to have 2 teams this year. Our team is team 1 - we don't have a name or theme yet. I will be putting a link on the bottom to the website.
In the Arms of Friends is having a huge garage sale April 16. If you have any items you would like to donate to such a wonderful cause, just let me know. I can get it there for you. And if you love garage sales, this is definitely the one to go to! Click on the link to In the Arms of Friends below for more info. When the time gets closer I will post the times and address here. They are also having a great fundraiser with the new play complex called In Play coming in June. On June 5 they will be raising money for In the Arms of Friends. An all day ticket to all rides and games is $20, of which $10 will go to In the Arms of Friends! You will then receive a certificate for $20 to use again sometime at In Play. So it's basically free - and In the Arms of Friends is a wonderful, local organization started by some of our friends from the hospital.
Please say a prayer for our friend Haley who is at St. Jude's for more treatments. Pray that this is the cure she needs. She is such a beautiful, wonderful young lady.
Wednesday, February 16, 2005 8:27 PM CST Monday, February 21, 2005
Brooke's port removal today went very smooth! They took her a little early and she came out of anethesia very well. She was in a very good mood and very hungry after surgery. She ate 2 of those little boxes of Froot Loops and some mac & cheese befor we left the hospital. Then we went to Nick's office and Brooke wanted him to take her to lunch, so we went to Fazoli's and she ate all her spaghetti! Of course she was full of morphine! After a stop at Build-A-Bear she played good all afternoon until things started hurting about 4:00! So now she is watching a dog movie! Thanks for checking in on us!
Wednesday, February 16
last satrday i was sik. My mom sined me up for karate last wek. i had my valentines party at school. Brooke
Brooke has been fighting a cold and cough and came down with a fever Saturday night, but it was gone Sunday and she was feeling better. She was glad she didn't have to miss her Valentine's party at school! She finally slept all night last night. She's been waking up coughing and not falling right back to sleep, she's so stuffed up. I think we're on the downhill slide finally. Gavin had a bit of a cold, but not near as bad. It seems like a lot of people we know are sick right now and we've been doing good so far.
Gavin & Brooke have been wanting to do karate for a long time and I finally got them signed up for that. They've only had 2 lessons so far. I think they're really going to like it.
Tomorrow, Nick & I are going to Las Vegas for the weekend and going to golf while we're there. Nick's Aunt & Uncle are going also. Grandma (my Mom) is staying at our house to watch the kids. They will have fun!
Monday is the big day for Brooke to get her port out. I hope Brooke's cold clears up over the weekend so there are no problems that way. The kids are off school Monday and Tuesday.
The kids just noticed, while I'm on the computer, that it looks like Snowball broke off a front tooth. I suppose I'll have to call the vet tomorrow and see when we can fit that in somewhere. He doesn't act like he's in pain, but he kind of snapped at Gavin, so maybe it is bothering him a little.
We hope everyone is staying healthy and wish you a great weekend!
Tuesday, February 1, 2005 8:34 PM CST Brooke had a good check-up today at the hospital. They took some blood and heparinized her port. That should be the last time for that! YEAH! She is scheduled to have her port out Feb. 21. Hopefully they'll be able to do blood checks with finger pokes after that. Brooke is worried about blood withdrawals - she would rather keep her port if she can't just have finger pokes. We were there later in the day so won't really have any results until tomorrow. Gavin got to go with us. The kids had so much fun playing, they didn't want to leave! I had to practically drag them out of there! It was nice seeing everyone there again!
Monday, January 24, 2005 5:32 PM CST We made it home from Florida Sunday night about 9pm. We had an awesome time at Disney World and Sea World. We had a very full week visiting 1 or 2 parks a day! We stayed at Give Kids the World Village and the kids absolutely loved it.
It was too cold out to do any swimming while we were there, but the kids kept busy with all the other fun stuff. There was putt-putt golf, a video arcade, movie theatre, ice cream parlor, magic castle with carousel,a pond you could fish in and even more! Thursday night the kids got to see Santa and Mrs. Claus. They vacation in Florida and did you know Santa likes to golf?! Saturday night was Mayor Clayton's birthday party with dancing and birthday cake and all! Mayor Clayton is a very large bunny and he is the mayor of the village.
We went to Universal Studios/Islands of Adventure one day. While there we did the Jurassic park ride that was very fun/scary/wet! Brooke got slimed at the Nickelodeon studios. She was captain of the blue team and her team lost so she got slimed! She thought it was great! At MGM we all went on The Tower of Terror! Brooke was terrified - so we definitely had to buy that picture! Ask to see it if you're ever here!
We also visited Magic Kingdom, MGM, Animal Kingdom, Epcot, Downtown Disney and Sea World. Shamu was a hit! We sat in the 2nd row, middle aisle - right in front! The longer we sat there before the show, the more we bought! 1st a towel, then another towel. A few minutes later a couple ponchos - we knew we were going to get soaked! And we did! The kids loved every minute of it. At the Magic Kingdom we rode Thunder Mountain, Splash Mountain, Space Mountain and Buzz Lightyear ride all twice!
The kids got lots of autographs and met many characters. They got tired of me taking their pictures! I gave my film and memory stick to our wish granter who met us at the airport when we arrived home, so I won't have new pictures to put on here until I get that back! The limo then brought us home!
Tuesday, January 11, 2005 9:37 AM CST Well, we didn't go in for Brooke's port removal today. I rescheduled it. I talked to the surgeon yesterday to find out how long it would be before she could get the incision wet and he said he usually says at least a week. And then he sees them for the follow up visit. Beings we are leaving for DisneyWorld on Monday I was starting to think it would be better not to have to worry about the incision while we're gone. (Although Dr. Cusick said she should be fine if we did it) Plus it might be uncomfortable still. The incision is a good 2-3 inches. Then I came down with a pretty bad cold yesterday and figured I shouldn't be spending the day at the hospital. We rescheduled for Feb. 21, President's Day. The kids have that Mon. & Tues. off, so that should work out better anyway.
Thursday, January 6, 2005 10:40 AM CST Another snow day! Yeah! The kids are in heaven! They were suppose to go back to school Monday, but have only been at school one day this week - Tuesday. Monday was cancelled because of ice. Tuesday it finally started snowing. Today the sun is out, but right now it is -5 degrees out. The kids don't care, they just bundle up and head right out! They'll be in for lunch and a short break and then go back out. That's what they did yesterday.
We had a fun New Year's Eve this year. We don't always do a lot, usually get together with some friends and family at home. This year we went to the Holiday Inn in Lincoln and spent the night. Some of Nick's brothers and sister-in-laws came and his Aunt & Uncle, with a couple of their kids. There were a couple of bands and a good dinner and breakfast. We had a lot of fun.
Hope you all are staying warm! We're getting excited about our trip to DisneyWorld. We leave the 17th. I checked the temperature in Orlando and it's suppose to be a high of 80 this week. I hope it's like that when we go!
Happy Birthday to Nick! He'll be 35 tomorrow!!!
Tuesday, December 28, 2004 9:51 AM CST Happy Holidays! We hope you and your family are having a nice holiday season. We sure are. We spent Christmas eve and morning in Omaha and then headed to Ewing to Nick's Grandpa's for the day. Then we went to Butte Saturday night and for a family get together on Sunday. We got to see my Grandma's and many relatives over the weekend. Today we are headed to Albion to my parent's house. We will get together Sunday with Nick's family. The kid's are loving it - Christmas for more than a week!
Brooke got to play with my Aunt & Uncles new puppy while in Butte. She thought she was in heaven! She wants to be a dog groomer when she grows up and Santa brought her a pet salon grooming station. All her toy puppies will be all nice and groomed now. And poor, poor Snowball - he sure puts up with a lot - he'll probably get groomed every day! Gavin really wanted to see Santa. He slept in the chair by the fireplace Christmas eve hoping to catch him. But he must have been so tired he didn't get to see him.
Everyone is feeling good around here. Brooke amazes us with her energy. She got a little pet ambulance for Christmas and she had the little puppy hooked up to a little machine in it. She told me he was getting his chemo!
Brooke is scheduled to have her port out Jan. 11. Then we are scheduled to go to DisneyWorld Jan. 17-23 on her Make-A-Wish trip! We can't wait! I can't believe it's almost 2005! Happy New Year everyone!
Monday, December 20, 2004 2:29 PM CST Merry Christmas everyone! Just wanted to let you know Brooke had her ultrasounds and chest x-rays this morning and they all looked clear! So we can take a deep breath and enjoy the holidays, now. Even though she's been doing so good, I get this big knot in my stomach going in for tests and just about could throw up. Even if you try not to worry about it, you just can't help it. Brooke does an excellent job with these tests. We also had her port heparinized and a check-up and blood and urine tests done. Dr. Gnarra said we can go ahead and schedule her port removal! Yeah! I have to call the surgeons office to see when we can get that done. Hope you all have a great holiday season!
Thursday, December 16, 2004 6:43 PM CST Tomorrow is the last day of school for Gavin & Brooke until Jan. 3! I have a feeling next week might get a little long - they're already asking if they can open a present early. Monday we will be at the hospital for Brooke's check-up and ultrasounds. We'll probably make cookies next week and do some other fun stuff.
Brooke has been practicing her songs for music class, there will be a concert on Feb. 25. She told me the other night that she's "such a good singer" and she "loves hearing herself sing"! Then Make-A-Wish called and said they were checking on us going to Florida that same week, so I told Brooke she was going to miss her concert. She didn't want to miss it and wanted me to see if I could change it, and I told her I couldn't do that. Then today they called and said we can't stay at Give Kids the World Village that week, so now I think we are going the week of Jan. 16 - 22, so we can stay at the village. When Brooke got home I told her she wouldn't have to miss her music concert, and she just started crying and crying because she said she "shared with her class today, and told them she was going to be gone for the music concert. So now she can't go to school that day because she lied!" She was very upset about it and I told her she didn't really lie, because that's what they told us, but now they changed it. She was very adamant about not going to school that day. She'll get over it! I don't think she "shares" much with her class, and it must be very important!
Yesterday, her teacher came to the school to show the class her new baby boy, Jesse. Brooke thought that was pretty neat. She can't wait for her teacher to be back after the holiday break. She really likes her substitute, also. She lets them play "Silent Sock". She comes home with all kinds of sayings that her sub teacher says! It's pretty funny.
Happy Holidays to everyone! Please say some extra prayers for our friend, Haley. She's one special little lady. If you want to visit her site, it is caringbridge.org/ne/haleygirl. For some reason, my link doesn't always work. Thanks, Darby
Sunday, December 5, 2004 9:50 PM CST We had a fun day today at the Make-A-Wish Christmas party. There was food, fun, and Santa! Gavin won a drawing for a huge stocking full of stuffed animals. Just what we needed at our house! The kids were sure excited! They got to tell Santa what they wanted and Brooke stood in line to pick a key to try to open the treasure box and pick a prize no less than 20 times. She never did get the right key! After finishing the Christmas lights outside (in the rain, but Nick wanted to get it done), we took the kids to the movie "Christmas With the Krank's". We really enjoyed it.
Glad to report there's not much other news here. Brooke seems to be feeling really good. I don't know where she learned it, but all morning she was walking around the house singing a song that I now have stuck in my head. It was "I've got a gratitude attitude! Yah! Yah! Yah!" Try to get that out of your head!
Thursday, December 2, 2004 1:13 PM CST It is with tears falling from my cheeks that I want to let you all know that our sweet little friend, Josh, has passed away. I never wanted to have to report something like this. It is so, so hard. His family needs lots of prayers and support right now. If you would like to stop by his site, it is: www.caringbridge.org/ne/josh.
Sunday, November 28, 2004 6:42 PM CST Let it snow! Let it snow! Let it snow! It really looks like Christmas here tonight. The kids are hoping for a snow day tomorrow, but we didn't get that much! Only a couple inches, but they won't give up hope! It sure looks pretty and makes it feel more like Christmas is coming! Now I might feel like getting in gear!
We had a wonderful Thanksgiving in Oklahoma at my sister's family. They live in Ardmore, which is on the Texas border. So we spent Wed. night and Sat. night in Wichita to cut the trip in half. That worked out great. We stopped at a Best Western - just wanted an indoor pool. We didn't know they had a whole courtyard full of things for the kids to do. It was perfect after spending so much time in the car. They had pool tables, ping pong, shuffle board, putt-putt, video games, air hockey and more! The weather in Ardmore was perfect - I think it was about 75 on Thursday. The kids played outside alot and are very tired. They will definitely be going to bed early tonight!
Brooke had her monthly check-up on Monday. She was actually skipping through the hospital to get to the clinic! I think she actually missed the place. She played some jokes on Anisa and Christy and thought it was great. She wasn't even ready to go when we were finished. And no tears! - what a nice day it was! We will be back closer to Christmas for another check-up and they will be doing a chest x-ray or ultrasound. I have to call on the 1st to schedule that appointment.
We have some Wilm's friends who we would like to ask you to say a few extra prayers for. Haley is going in for scans on Wednesday and would REALLY like to see some clean pictures for once! It's time for that to happen! And our little friend Josh is in a lot of pain right now and he and his family could use as many prayers as can be said. Please pray for a miracle for Josh. Thank you.
We hope you and your families had a great Thanksgiving, also. Darby
Thursday, November 18, 2004 8:13 PM CST Happy Thanksgiving. I'm Goingn out of tan for Thanksgiving to my cusins in Okiohomo. They movd. it is my frst tim there. Snowball is doing fin. i'm doing fin to. at scooll i'm good at reding. at scooll . my fonubr is 9659280. my adres is 14816 lake sit
by snowball
Saturday, October 30, 2004 9:25 PM CDT HAPPY HALLOWEEN! Gavin and Brooke can't believe it's finally here! Sorry for the delay in updating - there hasn't been much going on around here and I've been having a hard time with my computer.
Friday, Brooke had her monthly check-up at the hospital and all was well. She got her port heparinized and her flu shot. We also got in on the Halloween party in the lobby. What a fun time at the hospital. Brooke had a check-up last year on Halloween and we got to enjoy the party. We're going to try to make this an annual check-up day! As you can see from the pictures there was some awesome face painting going on along with other activities. There was a costume contest for the employees and a parade of the kids in their costumes.
Brooke did great with her port, but was very upset when she found out she was getting her flu shot. Last Friday Brooke came home from school with a sore throat and a couple hours later got a fever. Sure enough she had strep throat, so she got a penicillin shot in her leg for that. (Because I can't get any shape, form or flavor of medicine down her at home.) So the flu shot brought back memories of last week!
The kids got out of school early Thursday and had Friday off for parent/teacher conferences. Today (Saturday) we went to Lincoln to tailgate and Gavin and Nick went to the game. Gavin has his last football game on Sunday and then the kids will be ready for some trick or treating. Gavin started basketball last week, so that will be his sport for now! Hope all is well for all our friends and family checking in on us! Nick, Darby, Gavin and Brooke
Monday, October 4, 2004 9:12 PM CDT I Wit To The Pumpkin path On Monday Anh I Didnt Have School And My Dad And Gavin Got Their Animals From Africa And My Dad Shot A Zebra And He Made It In A Rug And I Went To My Grandmas And Grandpas House And Me And Gavin Got To Spend The Night At My Grandpas And Grandmas Love Brooke Thank You For Looking On Brookes Website
Friday October, 8, 2004
I've decided I better take a minute to add to Brooke's journal entry! Tonight the kids and I went to the school's Family Fun Night. Of course they saw lots of friends and had a lot of fun. Gavin is having a neighbor friend spend the night tonight. Nick went to Kansas City tonight to go to the NASCAR races there this weekend with some of his brothers. We've never been to a NASCAR race before. I think they'll have a lot of fun. Gavin has FB practice tomorrow and a game on Sunday. He also has a birthday party to go to tomorrow, so the kids and I decided we'd stay in Omaha and go to KC another time.
Last weekend the kids went to Grandpa and Grandma Kirwan's house in Albion. They had a good time while Nick and I enjoyed a movie on Friday night and went to Lincoln Saturday to tailgate and go to the Husker game. After the kids got home Sunday, we had a big project to tackle! We opened the 2 big crates that had been delivered on Friday and were in our garage. They were full of the animals Nick, Gavin, and Nick's brother Jason shot last year in Africa. Our house has been redecorated! I now have a blue Wildebeest on the wall in the family room. The living room boasts a red Hartebeast and an Impala. Gavin has the Impala he shot on the wall in his bedroom along with an Impala hide. A very large Zebra rug will be going on the wall in our bedroom. That thing must have been as big as a horse! I didn't know it was still going to have it's tail, mane, nostril holes, eyelashes and all! We also have a Warthog to figure out where to put and a Kudu that is so large you can't hang it on the wall. It came with a pedestal to put it on, but it's horns are so long it is still too high for our ceilings. I guess we need a shorter pedestal for it. And NO, my house is not big enough for all these animals! Please feel free to stop by any time and visit our zoo! (Today when I was dusting I bumped my head on the Blue Wildebeest - it kind of freaked me out for a second!)
Monday, the kids had the day off school, so we went to Vala's Pumpkin Patch, which has become a tradition. We had a beautiful day and hardly any crowds at all beings it was a Monday and it is still early. It was a lot of fun.
Brooke continues to feel very good. Her hair is coming back (seems slow to me) and her energy is amazing. Thank you for all your continued support and prayers for continued remission.
Wednesday, September 22, 2004 3:27 PM CDT Brooke had her CT scans today and Dr. Gnarra said they were clear! What a relief. You worry after treatment is finished that something might come back when you're not doing treatment. You actually feel better when you are doing something about it! We had her put out with general anesthetic and everything went well. Her next scan will be in December with montlhly check-ups until then.
Brooke ran into a couple of her friends from camp COHOLO today! Hi Emma! We saw Emma in the clinic and then ran into Molly Lambert's Dad and Grandpa. They told us Molly was on 6th floor finishing her last round of chemo and she gets to go home today. Way to go Molly!!! So we stopped by Molly's room to say Hi! And we left with a watermelon! Thanks guys! We can't wait to cut into it! So we had a pretty good day I would have to say!
Saturday, September 18, 2004 9:37 AM CDT It seems like all we do around here anymore is football practice and spelling words! Sure beats hospital, hospital, hospital! We will be there on Wednesday, the 22nd for Brooke's CAT scan and monthly check-up.
Everything is going good around here. The benefit last Saturday was a lot of fun. The kids had a blast! We've also been tailgating for the Huskers, Gavin had a great birthday, and we went to a Candlelighter's picnic that was alot of fun. Today Nick and I are golfing in a tournament. I've never golfed 27 holes in one day!
Tomorrow after Gavin's football game we are going out to Camp COHOLO for their 20th anniversary celebration. Brooke will be able to show us around and tell us more about what she did! She loved that place!
Brooke is loving 1st grade, even though some mornings she'd rather stay home! She told me that the other day at recess a boy kept calling her a boy. She told him she was a girl, but he told her she was lying. I'm sure it bothers her a little, but she doesn't act like it bothers her too much. Everywhere we go people think she is a boy. It doesn't matter what she is wearing. The other day she had on a hot pink shirt that said "Girl Power" and the waitress called her a boy. She and Gavin really look alike right now. Her hair is coming in nice and thick, but still not long enough to even put a little clip or something in it. I think these kids that have to go through all this are going to be amazing individuals as they grow up. It will be fun to watch them.
The other day Brooke had to go to school hungry. Her tooth was so loose she couldn't eat and Gavin and I couldn't get it out! She saw Miss Fahnholz (her kindergarten teacher) at school, so she pulled it out for her! I should have known she'd let Miss Fahnholz get it!
Thursday, September 2, 2004 12:57 AM CDT School has started and I can't believe how fast the days are going! Brooke came home from school the first day starving. She ate 2 bananas, an apple and then not much later ate all her supper! She likes school, but sometimes in the morning doesn't want to go. She doesn't have enough time now to play with all her stuff. Third grade seems to be going good for Gavin. He hasn't had any homework yet, I guess next week they'll start bringing homework home. He will be 9 on Sunday. So Saturday we will be going to Lincoln for the Husker football game and Sunday will be a party for Gavin. He's counting down the days, of course.
Brooke had her monthly check-up on Tuesday. They said she looks good and scheduled her next CAT scan for Sept. 22. She will be out with general anesthesia, so I will be interested in how it looks. We'll be letting you know.
I'm glad to say nothing too interesting is going on around here. I like that! Boring can be a very good thing!
There is going to be a benefit on Sept. 11 in Lincoln for Haley, Josh and Brooke. Haley and Josh are our friends who also have Wilm's. They are both still in treatment. The benefit is at the Lancaster Event Center. There will be food, a D.J., music, raffles, and silent auction. The cost is $10 per person, $15 per couple and $30 for a family. If anyone would be interested in helping or has anything to donate to the raffle or silent auction, it would be greatly appreciated. Tina Tindle is putting on the benefit and is in need of some help. If anyone is interested, they can contact her at (402) 601-1450. Thanks, Darby
Monday, August 23, 2004 12:03 AM CDT Sorry about the delay in updating. I have been having trouble with our computer and it drives me crazy to try to do anything on it. Everything is going good around here. The kids start school on Wednesday. Gavin has started practice for tackle football. He loves putting on all the pads and his helmet! We had a very busy, wonderful weekend around here.
Friday, the kids and I spent the day at Offutt Air Force Base. They were practicing for the air show that was Saturday and Sunday, and they put on a special day for the Make-A-Wish kids. It was so much fun. We got to see alot of different aircrafts and the kids got to go in some of them and meet the pilots that were just bringing them in for the show. Gavin's favorite was the B-52 bomber! The Thunderbirds and the army Golden Knights performed for us and some other trick pilots. The kids got to meet the Thunderbird pilots and the Golden Knights paratroopers. Gavin got to help one put his pack away. We got lots of pictures and autographs. We met some of the head guys that live on base and the Commander gave each of the kids one of his special coins. They got alot of neat things. It was a very special day that was a once in a lifetime opportunity. There were many AirForce and other personnel volunteering to help us all out for the day. Brooke made a friend in Robbin Alex who is actually in the Navy and her husband is an Air Force pilot.
Saturday night we had Brooke's "No More Chemo" party. We had a great turnout and the weather couldn't have been better. The kids all had fun in a big bouncer we got for the day, and when it got dark we got the glow sticks out and those were alot of fun! Thank you to everyone who came and made our day so special!
Monday, August 2, 2004 10:48 AM CDT Sunday August 8,2004
Just a quick add-on note. It seems we must be trying to cram in as much as we can with what summer we have left. We spent the weekend in O'neill and golfed in a couple of tournements. 45 holes of golf this weekend. I guess I can say I'm a golfer now. Gavin & Brooke stayed with some of Nick's cousins and they had a wonderful weekend. They had so much fun. They went boating today at Calamus Reservoir and had a ball. We got home about 8:30 tonight, threw dirty clothes in the laundry room and clean clothes into the suitcase. Nick is taking them to my Aunt and Uncles to stay a few days while we go to Las Vegas. So I am repacking our bag to leave in the morning!
Thursday night in Lincoln will be a fundraiser we are going to. It's the CANCER SUCKS CAMPOUT! and it will be at Hamilton College. There will be a BBQ and fun and games. The address is 1821 K St. if anyone would be interested. There is going to be a bigger fundraiser then on Sept. 11 in Lincoln for Haley, Josh and Brooke. I will give more details on that when we get back.
Brooke had her check-up Friday at the clinic to heparinize her port and do a blood and urine check. When we got there, the big red banner saying "Way to go Brooke" was hanging! We've seen these many times throughout the year when someone finishes their treatment. It's always a nice site to see, but even better when it's yours!!! We've waited a long time to see it, yet it also seems like the year went fast. She did great this time when they accessed her port. Usually she cries and spits because she can taste the saline and heparin when they push it in. This time she just chewed her gum and did great! She will have another CAT scan in a couple months. Monthly we will go in to get her port heparinized.
Yesterday she put together her camp COHOLO scrapbook. She is still talking about camp and how much fun it was. Today is suppose to be hot again, so I told the kids I would take them swimming. Gavin starts football practice soon and he's really excited about that. Last week we went to the zoo and took some cousins with us. It was a beautiful day out. We're really enjoying our more normal summer! School will be starting way too soon. The kids start August 25.
Last Thursday Brooke helped serve free ice cream cake at Cold Stone Creamery for a Make-A-Wish fundraiser. We then went to the In the Arms of Friends fundraiser for supper. It was all so delicious! (And we got to have dessert before supper!)
Our friend Haley had to have surgery last week to remove a tumor they found by her brain. She is home and sounds like she is doing OK. They're still waiting to find out what's next. Haley could use all the prayers you can offer right now along with many of our friends we have met at the hospital. Thank you everyone for all your love and support and prayers! You mean the world to us!
Wednesday, July 21, 2004 5:06 PM CDT We picked Brooke up from camp this morning. You think they're going to be so excited they would just run up to you and give you a hug, but Brooke had just found a stick to get something shiny out from under a tree. She didn't seem to get too excited when we got there! I think the parents were more anxious to get their kids home than they were! On our way to the car she was already asking if she could go again next year. She asked me again this afternoon if I was going to let her go next year. I just wish they would take Gavin, too!!! It was really nice having some time with just Gavin. He needed that, too. If you want to see some pictures of all the fun stuff they did at camp, you can click on the link below and go to the photo gallery at camp COHOLO. If you click on the picture, there will be an icon in the lower right corner you can click on to make the picture bigger. Brooke said her favorite things about camp were the dogs that came one day and the snakes! She said there were snakes in cages in the lodge. Her other most favorite thing was the water slide. I bet those counselors are tired!!! Thank you to everyone who makes this camp possible and volunteer so much time and energy so the kids can have such a great experience!
Monday, July 19, 2004 3:20 PM CDT Brooke is off to camp COHOLO. (Courage, Hope, & Love) We dropped her off Sunday at 10am and will pick her up Wednesday at 10am. She was very excited to go! I thought she might change her mind about spending 3 nights there when we dropped her off, but she gave us all hugs and sent us home!! She gets to share a bunk with Christy, the child life specialist from the clinic. Christy is on bottom and Brooke got the top! Last year when Brooke was diagnosed, there was a girl in the room next to us at the hospital with cancer and she was getting ready to go to camp the following week. They asked Brooke how old she was and told her that next year she would get to go. I could hardly hold back the tears. I couldn't believe that my little girl was going to be able to go to a camp for kids with cancer. Now that a year has passed, it's just the way it is & I'm so excited they have this camp. I hope Brooke can go back year after year. Maybe some day she will be a counselor there!
Nick and Gavin made it home from 9 days in Wyoming just in time to see Brooke before she left. They got home at 3:30am Sunday. Boy did the kids miss each other! Gavin and Nick survived their 30 mile hike down and up a mountain to go fishing. Nick said once they got in there, he didn't know how they were going to get out! They made it out and checked out Yellowstone and the Grand Tetons before heading home. They went with some of Nick's brothers and wives/girlfriends. Gavin was the only kid. Some of them thought they were going to die before the week was over, but Nick said Gavin never complained once! He loved it all!
We'll let you know how camp COHOLO was when Brooke gets home! We saw lots of people we know checking in at the same time. I'm sure they are having lots of fun!!
***Just click on the link below to see pictures of Brooke at camp COHOLO. There are current pictures in the photo gallery. On Sunday, July 18 she was wearing a light blue shirt and her pink hat. She is in group 1.
Saturday, July 10, 2004 11:42 AM CDT We've had a very busy week and things are starting to feel a bit more normal around here! For one thing, we went out of town for a few days! I took the kids to Butte for Pancake days on Tuesday and we came home Thursday. We went to the parade and carnival and ate free pancakes! Brooke lost her 1st tooth eating a caramel apple! She didn't even know it when it happened, and then she was worried the tooth fairy wouldn't come because she didn't have the tooth! But the tooth fairy found her! We got to see the great grandma's and lots of friends and relatives. (Hi Logan Brewster!)(Logan said he has the song "Rosemary's Granddaughter" stuck in his head! He told me I should change it! I said I would if I could figure out how to do it! I was lucky to get it on the 1st time!)
When we got home Thursday, we went to Petco and used the outreach money the kids raised at Vacation Bible School for Brooke. She picked out lots of things for the animals at the Humane Society - $260 worth. Then we took the goodies to the Humane Society and the kids got to play with some kittens and dogs. Gavin wanted to bring home a cat really bad!
Friday morning Nick and Gavin left for Wyoming to go to Deep Lake fishing. They have to hike and backpack in for 8 hours and then set up camp. They will be gone a week. I guess I'll have to mow the yard myself! Brooke and I have plenty to do around here to keep ourselves busy, and my sister and her family are coming to visit this week from Oklahoma.
*New photos in album*
Thursday, July 1, 2004 1:56 PM CDT Brooke's ultrasound came out clear!! Yeah! Yeah! We will be waiting to hear from Dr. Gnarra on what is next. I'm thinking another scan in a few months. We will be putting Brooke out with General Anesthetic next time. Monday they gave her some pentobarb to make her sleepy. It might have worked OK, but when they hooked up to her IV to push the contrast in, the IV wouldn't work. So they had to mess with that and it kind of woke her up and then it took a long time to get her to settle down. Not a fun day. Today was much easier. She lays perfectly still for the ultrasounds, but there are no IV's involved. Huge difference!
We stopped at clinic and picked up Brooke's camp COHOLO registration papers. Christy had a video for her to watch, also. Brooke goes back and forth about her decision on whether or not she wants to go. You have to be 6 and she just turned 6. It is an overnight camp for 3 nights. She just may go because Christy will be there. Christy is the child life specialist from the clinic. Brooke also told me she will only go if she can wear her own puppy shirts, not the camp shirt! I might let Christy struggle with that one at camp! Camp COHOLO is for kids ages 6 - 17 that have or have had cancer. I think the kids are from Children's Hospital and the Med Center. COHOLO stands for Courage, Hope, and Love.
Last night I went to a meeting at another family's home who's son had cancer. Kelly Beresh and Liz Larson have started a new organization called In The Arms of Friends. It will be to help out families of children newly diagnosed with cancer. When the family first comes to clinic they will get a nice bag with a binder to keep important information in, gift cards for gas and food places near the hospital, ideas and a gift for the child. They are also buying toys and things for the clinic and going to raise money for childhood cancer research organizations. If anyone has any good ideas for fundraising or is looking for a great organization to support, it would be greatly appreciated! They are going to have a Carraba's night on Thursday, July 29. They are also selling some beautiful bracelets and key chains. I am adding a link to their site below.
Thank you again for all your great support and prayers. We are looking forward to enjoying the rest of our summer. Don't forget to give blood! That's what I'll be doing in the morning!!
Tuesday, June 29, 2004 7:15 PM CDT I'm just going to do a quick update for now. I talked to Brooke's doctor today. He said the radiologist was still looking at Brooke's scans. Her kidney looked fine, but something is showing up by her inferior vena cava that they're not sure what it is. He said it might be some scar tissue, but I don't know what that would be from. So now we need an ultrasound to look at that area. I'm waiting to find out when that will be scheduled. When we find out more, we will let you know.
i love snowball love snowball and love brooke
Wednesday: Just found out her ultrasound will be Thursday morning. Will let you know how that comes out.
Wednesday, June 23, 2004 10:06 PM CDT Hi everyone! We are having a good week here at the Brion's trying to get caught up here at home and get back into a normal routine. Brooke didn't need blood or platelets on Monday and we got to stop doing her shots every night! Yeah! Today we went in for another check and Brooke's counts were fine and she didn't need blood or platelets. Monday will be her CAT scan and we are going to put her to sleep for it. She won't be under general anesthesia because she has to drink the contrast 1st. They are then going to give her a shot in her leg to put her to sleep. She won't be happy about that, but hopefully we will get a clear scan. She's already upset that she has to be put asleep and doesn't know about the shot yet!
The kids are having fun at vacation bible school every morning this week. Brooke's friend Tessa is in her group. I think both girls were glad to see a familiar face! The theme this year is Lava Lava island. Brooke is the recipient of the outreach program this year. Each year they have the kids bring in donations to donate to someone. This year they are donating to Brooke and Brooke is going to give the money to the Nebraska Humane Society. She is SO excited to go to the pet store and buy some things for the animals and then take them to them. She can't wait to play with all the animals! I will try to put some pictures on here when that happens.
We were excited to see our friend Josh Brestel today in the clinic. He looked so good! What a cutie! I've seen him too many times when he's been a patient and not always feeling the best. Hi Josh! And HI to all our other friends and family!
Saturday, June 19, 2004 9:41 AM CDT Brooke got to come home Friday afternoon. She needed platelets first, but her white count was up to 340 and her
ANC was 244. She is feeling really good and is outside rollerblading right now!
It was a long 9 days at the hospital. We got permission to have Brooke unhooked from her IV for a while the last 3 days so we could go outside and get some fresh air. They have a nice little play area out front at Children's. We also took a walk across the street to HDR to check out the fountain one day. It was really tempting not to just get in the car and head home! Going back to the room just felt like admitting yourself back into a low security prison! As nice as the staff and the hospital is, we were just ready to get out of there. I think it makes a difference that it was so nice outside. In the winter it's not such a big deal to be inside all the time. And yet when we were leaving yesterday, I had tears in my eyes because we have come to love the nurses and staff on 5th floor for taking such good care of us! And hopefully that was our last stay there! I hate to get too confident about that though, you never know what's next.
Thank You again to those of you who donated to the American Cancer Society for the Relay for Life. We had lots of rain and storms on Saturday, so I was hoping they would reschedule it so Brooke could go. They just moved it indoors to the high school. It still worked out fine, but would have been better outside. Our team's theme was "Wipe Out Cancer". Gavin and I went and took cousin Jacy with us. Nick and Brooke had to stay at the hospital. Gavin wanted to stay all night really bad. Maybe next year we can take our tent and camp out all night!
We still have to do Brooke's neupogen shots nightly. We will go in Monday for another blood check to see if she needs any blood or platelets. When her counts get good enough we will be able to stop the shots. That will be a glorious day! Her CAT scan will probably be scheduled for the following week.
Vacation Bible school starts this week. It should be fun. I can't believe it's already the last half of June. We have so much we want to do this summer! Thanks again for all your continued support and prayers. You all mean the world to us! Darby
PS There's no frosting on Brooke's "DOG" cake because she didn't want it frosted!
New photos in album.
Tuesday, June 15, 2004 3:10 PM CDT Brooke is still in the hospital. Her counts are just slowly trying to creep up. Her white count when we went in was 20 and today it is 80. (Normal level is between 5,000 - 11,000). Friday she received blood and platelets and platelets again today. The first couple days she didn't feel good at all. Once she got rid of her fever, she felt much better. Sunday morning she woke up and wanted to get out of bed and clean clothes on! That was like a new kid! So now it's just hard to pass the time. Brooke mostly misses her dog Snowball and will get real sad and try not to cry, but she is homesick for him. That's when it really breaks your heart that she has to stay up there so long. When her counts are better the next step will be a CAT scan. They are working on scheduling that. I asked Dr. Gnarra what is after that if it is all clear. He said we sing praise and celebrate! So I will let you know when that will be! Thanks for all your continued support and prayers.
Thursday, June 10, 2004 2:57 PM CDT Brooke is back to room 513. We came in for labs this morning and she wasn't feeling the best. She started running a fever and has no ANC count, so they admitted her and started antibiotics. She was not a happy camper. We will be here until she is fever free for 24 hours and her counts come up.
Yesterday she had a great birthday. Thank you for all the birthday wishes and cards.
Thank you for all the donations received for the American Cancer Society Relay for Life. It doesn't look like Brooke will be able to do the survivor lap, but maybe I can get Gavin there at least and we can partake in some of the fun activities.
I better get back to the room before Brooke wakes up. Gavin is in there with her and we were sure glad she fell asleep for awhile!
Friday, June 4, 2004 4:13 PM CDT Brooke has finished her LAST ROUND OF CHEMO!!! Boy are we excited! She got home about 6:30 pm. She was finished with her chemo by noon, but was throwing up quite a bit and not drinking anything, so we stayed the afternoon to keep her on more IV fluids before we came home. She hasn't thrown up since we got home and hasn't even wanted a Zofran, so must be feeling OK. Gavin was so excited to spend all his time at the hospital with us now that school is out. I even let him spend one night with us! He's never stayed all night in a hospital before, so he was thrilled. There are all kinds of garage sales going on around us, so this morning I took the kids to some and it felt so good to be outside. They found some more beanie babies to add to their collections; like we really needed those! They love them! They just left with a friend to go to the strawberry patch. So hopefully they'll bring home some good strawberries. We start Brooke's neupogen shots tonight and will go in Monday for a blood check. I'm sure in the next couple weeks she will need some blood and platelets. We just hope to avoid a fever and another hospital stay.
Next weekend is the American Cancer Society Relay for Life. There are going to be lots of fun activities going on and we plan on camping out and spending the night! We need to raise money for our team. If anyone is interested in donating you can click on the link below to get to Brooke's page on the Relay for Life site. You can use your credit card to donate or make checks payable to the American Cancer Society and send them to our address: 14816 Lake Street, Omaha,NE 68116. Thanks!
New photos in photo album.
PS If anyone would like to wish Brooke a Happy Birthday!, she will be 6 on June 9. We have been counting down for more than 100 days!
Monday June 7
Took Brooke in today for labs. Her hemoglobin was low, so she needed a transfusion. All went well. She did throw up when we got home. I don't know why she does that sometimes when she gets blood or platelets. Her cousin Meghan spent the day at the clinic with us and the girls had lots of fun making lots and lots of projects, bracelets and necklaces. Brooke and Schuyler got surprised with the staff giving them each a birthday cake, helium balloon and singing them Happy Birthday!
Thank you to everyone who has donated to our Relay for Life fundraising. We really, really appreciate it! THANK YOU!!!!
Friday, May 28, 2004 2:54 PM CDT Hi everyone! Brooke had a very nice kindergarten celebration this morning. Her teacher gave each student their own scrapbook and video from the year. After worrying so much about sending Brooke to school, she ended up having a great year. Her report card showed she missed 62 days this year, yet she still did very well. New pictures are in the photo album!
Nick, Gavin, Brooke & I are participating in the American Cancer Society Relay for Life this summer. It is an overnight camp/walk the track(or I suppose you can run if you're a little more ambitious than I am!). It is June 12-13 at Millard West High School. We are on the Children's Hospital team. There are 9 children on the team with 9 different forms of cancer. To be a member of the team we need to raise some money. If anyone is interested in sending a donation, I put a link on here to the American Cancer Society site you can use your credit card on. When you get to the site, click on my name (Darby Brion) under the list of team members. Or feel free to mail it to our home address: 14816 Lake Street, Omaha,NE 68116. Checks should be made payable to American Cancer Society. For $25 you can dedicate a luminaria that will be lit at a ceremony either to honor a survivor or in memory of someone. Luminarias will be placed around the track symbolizing the hope and perseverance with which we all continue to fight. Thank you for considering this.
Tuesday June 1
Brooke did get admitted today. She wasn't too happy about it, because the last couple times we came up we got sent home. So she wanted to go home! But this way she will get to see the dogs on Thursday and so will Gavin. He has never got to see the dogs, and Brooke talks about them all the time! School is out so Gavin will get to hang out with us here at the hospital. We are in room 10. Our phone # is 955-3510.
Monday, May 24, 2004 2:51 PM CDT I went to the hospital today. We didn't have to stay admitted. My counts was too low. Love Snowball and Brooke.
Brooke's platelets are still too low for her to get chemo. They said to come back Wednesday, but I asked if we could wait until next week. Anisa said that would be fine. Brooke has a kindergarten graduation on Friday morning and we didn't want to miss it! So we will go back next Tuesday beings Monday is Memorial Day. Have a good weekend everyone! Darby and brooke and snowball
Tuesday, May 18, 2004 1:38 PM CDT I Get To Stay Home This Week, my platelets are low. I will Go in next Monday. This is a story that I'm gonna read to my class. pudgy a puppy to love this is pudgye and this is Lucy. nobody will play with pudgye and nobody will play with Lucy. so nthey are sad... and then pudgye is bad. so bhe runs away... all on his . and he goes and finds... and lucy likes. pudgy licks lucy... so they play together... and they stay together. forever... and ever. (This entry by Brooke!)
Friday, May 14, 2004 4:01 PM CDT Sorry about the big delay in updating. We have been busy and the other night when I tried to get on, my internet wouldn't work - don't know why.
Last week Brooke's teacher bought all Brooke's class Make-A-Wish t-shirts and had Brooke sign her name to them. She's famous! Then Friday the kids all wore their shirts and wore them to family fun night at school. They looked so cute! After the carnival we went to Buffalo Wild Wings and BROOKE GOT STUNG! The Killer Bees were there!! The Killer Bees are a group that ride their bikes across Iowa in the summer ride. Brooke's teacher, Miss Fahnholz, is one of the bees. They wear black and yellow bike shorts and have killer bee t-shirts with their bee names on them. Some of the guys came to see Brooke and gave her presents and her own shirt with her new name on it - BEE-GINNER!! Mrs. Trant, one of the 1st grade teachers, also rides. Her name is BEE-1st! These guys are SO, SO nice, they gave her lots of attention. And I think Brooke won the wing eating contest - again!
Mother's Day was a good day. Brooke started getting a fever in the afternoon, though. By bed time I had to call. We ended up spending a couple nights in the hospital, but it was a short stay. She got platelets and blood while there. She also got platelets today and had to get them last week. We go back for a blood check on Tuesday. If everything is good enough, she will be admitted for her last round of chemo. Yeah! We get to stop doing shots for a few days(until after her next chemo), so it will seem like a weekend off! We have lots of plans, so hope it's nice out.
The kids had a very cold and windy day today for their field day today. Brooke got to go to some of it, but she was so tired she didn't want to participate much. Yesterday she got to play with a friend after school. Last night Brooke was in heaven because we got to take Snowball to Doggie play group! It's suppose to be for the dogs to play, but Brooke wanted to be right in the middle of it all! Rowdy and Christy invited us to go with them and Brooke was SO excited! She fell asleep this afternoon on the way home from the hospital about 3:30 and I bet she sleeps a good 2 hours at least!
Thanks again for all the prayers. Please say a prayer for my cousin and her family. It's been a very tough week. Their 15 yr. old son was killed on his 4-wheeler Monday night. He was such a wonderful young man. And please go give blood. You never know who is needing it, and there are plenty who do need it.
***NEWSFLASH*** Monday, 5-17-04
Congratulations to Miss Kristy Fahnholz! (Brooke's kindergarten teacher) Kristy is one of 15 Omaha Public Schools teachers to receive the Buffett award for outstanding teacher. She highly deserves this award and we are so proud of her and so excited! We are lucky to have such wonderful staff at Picotte!
Tuesday, May 4, 2004 9:34 AM CDT We had a pretty quiet weekend at home with Nick gone. The kids just wanted to stay close to home and play. I don't think Brooke felt the best and was afraid she would get sick if we went somewhere. She had a fun time at a friend's birthday party and took her bucket along just in case! Grandpa & Grandma came to see us. Sunday afternoon the kids wanted to play some video games, so I took them somewhere for a little while. When we got home Brooke did throw up, but not much, she hadn't eaten much. Then she felt better, so did eat more. Sunday night in bed she sat up and threw up all over me, the bed, and the floor! That was fun! Gavin was a great helper beings Dad was gone! Thanks Gavin! They're back to school today after having Monday off for a teacher work day! Brooke will need a blood check after I pick her up at school at noon.
I happened onto the Nebraska Make-A-Wish sight and there was a picture of Brooke's friends, Zach & Noah Geist! Noah is in Brooke's class. The brother's raised money to donate to Make-A-Wish by shaving their heads beings Brooke lost her hair. Thanks SO much guys! Check it out - click on the link below.
Friday, April 30, 2004 10:08 PM CDT Brooke came home today - yes - in the same shirt she went in. Oh Well! She got a bath tonight and some clean pajamas. The 3 days went very fast. Brooke got sick and threw up a few times, so they had to give her Ativan on top of the Zofran. That did the trick. She's been fine since we got home. We went to Old Chicago tonight and ate cheese pizza for the Make-A-Wish fundraiser. She ate a few bites of pizza and kept it down. Snowball gets so excited when she gets home he practically flies through the air and runs around in circles and doesn't know what to do with himself! It's really funny!
The plan is for one more stay for chemo in a couple weeks. Hopefully we can keep the neutropenia and fever away. We feel like we can see the light at the end of the tunnel, yet hate to get our hopes up too much, because you never know what might happen.
We saw our friend Josh in for chemo this week. He was just down the hall from us. He likes to go for rides in the wagon! Brooke got to ride the motorcycle. I think Grandpa started something!
Thanks for all the prayers!
Thursday, April 29, 2004 11:22 AM CDT I am writing this from the resource library in the hospital. Brooke was admitted yesterday for her 3 days of chemo. She had to get blood last night also, her hemoglobin was low. They did that during the night while she was sleeping. That worked out nice because she doesn't like to see the blood - it freaks her out. She also doesn't like to change her shirt because she doesn't like to see her port when accessed. So she'll probably go home in the same shirt she came in!! Today is a good day so far. Casey Marie and Whoopi (the dogs) were here this morning and got LOTS of loving from Brooke. The library cart and the candy cart have been by and she is having school time right now with Miss Maggie. She got Rachel to bring her the Power Wheels motorcycle and is going to ride that around this afternoon. She does have a bit of an upset stomache and threw up once this morning. They are letting her have some orange triaminic for a cold she has. That's the only thing she'll ever take. We should get to go home tomorrow, not sure what time. Tomorrow is the Make-A-Wish "Say Cheese Please" fundraiser. You can order a large cheese pizza for $10 and all money goes to Make-A-Wish. Many pizza places are participating. Brooke had her picture taken eating cheese pizza for some posters and table cards that are around town. Today we were going to go to Valentino's to help put pizza boxes together, but had a change of plans! I believe they will have that on the news tonight to promote the fundraiser. Thanks for checking in!
Monday, April 26, 2004 12:24 PM CDT We are at the hospital today for Brooke to be admitted for 3 days of chemo. We should get to go home Wednesday. Gavin is here with us right now. He had to get a tooth pulled this morning and even though it was a baby tooth, it was a molar he would'nt lose for a long time yet, so the roots were very long! He did very well though. Nick stayed at the clinic with Brooke to get her poke! That was good for both of them!! We had a very busy, very nice weekend. Nick's cousin got married Sat. and yesterday Gavin had his 1st communion. We got to see a lot of family and had a big party for Gavin after mass yesterday. Brooke was feeling really good, too, beings she hasn't had chemo for a few weeks. She should have another round of chemo in a few weeks, and then hopefully that will be it for chemo. Take care and thanks for all the prayers and messages!
CHANGE OF PLANS! Brooke's ANC count wasn't quite high enough, so they sent us HOME! We will go back Wednesday to see if she can be admitted for her chemo. I said it felt like a snow day! We get to stay home when we were all packed and ready to be gone for a couple days!
Tuesday, April 20, 2004 9:58 PM CDT Well there must have been a lot of prayers, because Brooke did better for her scans than she ever has. She drank all her contrast and didn't throw up when they put the IV in her hand. She tried very hard not to cry when she was laying on the table for her scan, but kept anticipating the contrast going in her IV, so her tummy was shaking. Then when they put the belt on her, she had to go potty! That always happens, too! Anyway, she did much better than she usually does, but the scans were still hard to read because of "motion". The doctor thought they looked OK though. I told them they better put her out or something next time if they want a clear picture. These are very hard on her and even though she tried really hard, they still weren't clear. Next week she will be in for 3 days of chemo and then one more round of chemo is planned. Hopefully, she will be finishing up treatment after that and going into a maintenance phase. Tomorrow she is so excited to get to go to the zoo for a school field trip! Should be fun - hope it doesn't rain!
Monday evening some great folks from the Union Pacific Employee's Club came to our house for a visit. They brought Brooke her own Spinoza bear. She was so excited and loves it! A Spinoza bear has a tape player in it and comes with tapes that have stories and songs - a lot about relaxing and coping and friends and such. There is a picture of it in her photo album. A great BIG thank you to the UP Employee's Club!
Friday, April 16, 2004 5:02 PM CDT Yesterday was a good day at the hospital because it was Thursday! Brooke got to spend plenty of time with Taco, Whoopi and Casey! We missed Casey - she was in Texas for the winter! Wednesday night Brooke got to play with Rowdy at our house. Rowdy is Christy's dog, she is the child life specialist in the clinic. They were going for a walk and we were outside, so Rowdy and Snowball had a good time chasing each other around the back yard. Brooke got platelets yesterday and they scheduled a CAT scan for Monday. We decided we are going to start calling them DOG scans! Maybe that would help! Brooke is actually due for chemo next week, but I think they are going to let us wait a week. I hope so. Brooke has her kindergarten zoo field trip on Wednesday and Gavin has 1st communion next Sunday. Brooke has a really hard time cooperating for her scans. We can hardly get the contrast down her and she HATES getting the IV in her arm. She gets so upset that sometimes she throws up what we just forced her to drink. Then she cries and has a hard time holding still for the scans. I get all nervous because you never know what they will show, and together we are a mess! So please pray for us to have a good Monday!! Nick is gone for the weekend turkey hunting, but will be back to go with us Monday. The weather is beautiful out, so we should have a good weekend doing whatever we want!
Tuesday, April 13, 2004 9:20 PM CDT Brooke got to go to school today! Boy, was Mom happy!!! Yesterday (Mon) I let her go for an hour and then we had to get up to the hospital for her blood check. She did need platelets again. They were deciding if we should go back Wednesday or Thursday for another check, Brooke shouted out "Thursday!" because she wants to see the dogs. So that is when we will be back!
Sunday, April 11, 2004 9:02 PM CDT Happy Easter! We had a very nice day and the kids had a lot of fun playing with their cousins at Grandma Brion's house. The Easter Bunny found our house and Brooke even found some bunny tracks on the floor! Last day of spring break and back to school tomorrow. Brooke has to go in for a blood check in the morning. If she needs platelets they make take a while to get because of the holiday. I guess the donations slow down because everyone is busy. She got platelets on Friday and the nurse was surprised it didn't take us longer to get them. Thursday we made it to the zoo. It was a lot of fun. The gorilla was picking his nose and the kids thought that was funny. There are 3 baby tigers in with their mother and Gavin showed her his stuffed cheetah and she came right up to the glass and was staring him down and following him wherever he went with that cheetah. And in the nursery we watched the baby orangutan and baby gorilla playing together. We watched them for a long time in their diapers. They were really funny. Hope everyone had a great weekend! Please go give blood if you can, it's amazing how much blood these cancer clinics must go through! And thanks for all the prayers!
Wednesday, April 7, 2004 7:41 PM CDT We went to clinic yesterday to get Brooke's blood checked. Her white count was 690 and hemoglobin 8.8. So we went back today for blood. Have to go in early Friday for another check, she may need platelets. Yesterday we got to see our friend Haley at clinic, that was a nice surprise! Today Brooke did a Jack Russell Terrier puzzle and had to show Dr. Gnarra. That is what kind of dog he has! If it doesn't rain tomorrow we may try to go to the zoo.
Thursday, April 1, 2004 8:59 PM CST We are home once again! Boy, did that seem like a short trip! 3 days and 2 nights - although it doesn't seem like we really left the place in March!! Brooke got 3 days of chemo this visit and finished her antibiotic this afternoon before we came home. She got to take a bath tonight and was in there for a very long time. It had to feel good. I don't even want to say when her last bath was! She has either had an IV in her arm or her port accessed for a long time. She doesn't like to put the aqua shield on over her port when it is accessed because she doesn't like removing anything adhesive. No wonder the dogs at the hospital liked her so much!! Ha! Ha! She got to see Zoe, Whoopi, and Taco again today for the 3rd week in a row. The week before that we only missed them by a few hours! The weather here was beautiful today and should be for the weekend. The kids are off school tomorrow and all next week for spring break. Not sure what we'll do, depends on Brooke, but there is plenty to do around here if we just stay close to home! Thanks for all your support and prayers. Please pray for our other Wilm's friends also: Josh and Haley. All these kids are amazing!
Monday, March 29, 2004 10:35 PM CST SURPRISE!!Our short stay at home didn't last long. Went in for a blood check today and her counts were good. That's great, but it means Brooke needs to be admitted to the hospital tomorrow for another round of chemo. I'm still not all unpacked from the last stay. We had a very busy weekend and I'm still not caught up.
Tuesday 3-30
We requested room 507 - same room we had the last couple weeks. Anisa said it was open and looks like that's where we will be.
Thursday, March 25, 2004 8:06 PM CST WE ARE HOME!!! Brooke has only been home 4 days in the month of March - and one of those we had to go to the hospital for a blood check. So it will feel REALLY good to be in our own beds tonight! Brooke was missing Snowball so bad, so a couple times this week I took him to a parking lot outside Brooke's window so she could see him! Brooke got her new port put in today and Dr. Cusack said we could use it right away, so we got to come home tonight and will start on her home antibiotics. I have to give it to her 3 times a day, including at midnight. I don't know if I can stay up that late! 2 more days for neupogen shots and we'll go in Monday for a blood check. Then maybe we'll find out the plan for what is next. Dr. Gnarra said he talked to the Dr. from John Hopkin's and he recommended 3 more chemo treatments, but I don't know if that was counting the one she just had. Brooke is sore tonight from her surgery - her neck is really sore. She won't take anything so I can't even get her to take some tylenol. Our friends who have Wilm's were also in the hospital the same time Brooke was. We have been keeping track of Josh through his website, so it was really nice to get to meet Josh and his parents this week(Josh was actually always sleeping when we saw him!) And Haley had her surgery last Monday and went home Sunday. We saw her on Wednesday and she looked great. So please keep Josh and Haley in your prayers also. Thank you for signing Brooke's guestbook and for all your prayers and support.
Tuesday, March 23, 2004 4:01 PM CST Home to pick up Gavin again! Gotta be quick - we get the playroom today from 4:30 - 5:30! We saw the infectious disease Dr. yesterday and her white counts were up to 650 and her ANC around 300 (it had been 0). So as long as we keep on the right track and no fevers, they should be able to put her new port in Thursday and then we can come home. Brooke will continue to need IV antibiotics for 10- 14 days at home. That will be something new! Brooke has been calling her class at school in the mornings on her teachers cell phone! You ought to see her lounging in her bed with her legs crossed and hanging out on the phone! Thank you for all the support and prayers!
Sunday, March 21, 2004 4:43 PM CST Just home to change clothes! Nick is at the hospital with Brooke. Gavin and I went to a couple 1st communions today and got to see lots of people we love! Great Grandma Kirwan and Grandpa and Grandma Kirwan were here this weekend and got to spend lots of time with Gavin and Brooke. Friday they took Brooke's port out - it got staph in it. Brooke does NOT like having the IV in her hand. When her counts get good enough they will put a new port in. Yesterday her white count jumped to 170 and today it is 230. So we are finally making some progress! They are still giving her some strong antibiotics and want to see those counts even better. Have no idea when she might get out of there. Thanks for signing the guestbook and for all your prayers!
Thursday, March 18, 2004 3:55 PM CST Brooke's white count is 60 today. Dr. Thompson said we won't be going home any time soon. Brooke does have a staph infection - good news is she isn't running a fever and feels ok. Today they had to change the needle in her port - I was really dreading that. Brooke was not too thrilled-I think the whole 5th floor could hear her screaming! They have to change the needle after a week. Good news was the candy man came around and Taco and Zoe visited today(the dogs!). We got her in the tub, too! She was refusing to do that too, but once she got in she didn't want to get out! It made her hungry - she wanted a steak from the Outback Steakhouse, but they don't open until 4, so she decided on a soft taco from Taco Bell. It couldn't be from Amigo's across the street( I tried that before), she knows what she wants! So I got her one and she ate the whole thing! Last night she ate a whole steak from Outback, so at least she's starting to eat again. Our friend Haley had her surgery Monday. She has Wilm's also, so please keep her in your prayers also! Thanks!
Tuesday, March 16, 2004 3:58 PM CST Just ran home to pick up Gavin from school. When Brooke's in the mood, she doesn't mind if I leave her for a little bit. She wanted me to get her a new computer game at Target. I left my cell phone on the front seat of the car, and when I got back in I had missed 17 calls! Guess who from?! Her white count was 50 today. Not moving up to fast. They gave her platelets yesterday and today she needs blood - her hemoglobin is down. That should make her feel better - she has been very whiny. Plus, she's got to be sick of that room. We are in room 507 and her # is 955-3507.
Friday, March 12, 2004 2:15 PM CST Surprise! Surprise! Brooke is back in the hospital. Thursday she woke from a short nap with a fever, so we went to clinic and they checked her counts. Her white blood cell count was at 70. Today her white count is 20. Normal range is 5,300 - 11,500! So we will be here a few days until that count is much better. That chemo last week must have really knocked her out. Her fever is way down today, so that is good. Not sure when we'll be home, we'll have to wait and see. Take care, Darby
Sunday, March 7, 2004 10:34 AM CST We made it home yesterday after a week of chemotherapy at the hospital. A couple of Brooke's friend's made it up to see her during the week, and that was really nice. By Friday Brooke was really missing Snowball and ready to go home. She wasn't too happy when they told her she was going to get a blood transfusion. Then she was really surprised when the State Troopers came to visit her, bringing her presents!! They brought her an American Girl doll that she has been wanting because it has a pet dog named Sandy. When they left, Brooke said " Now I have a smile on my face. " So they really made her day - on a day she really needed a nice surprise! Make-A-Wish called us during the week to ask if we would like to go to the Disney On Ice show Saturday night. They had 3 tickets donated to them, so I took the kids. It was a great show. Brooke was feeling pretty good - probably because they gave her blood. We ran into some Ainsworth folks who recognized Brooke from her website! Thanks for saying Hi! We're not sure what is next. We've started the neupogen shots again and will have to go in for blood checks until they let us know the plan. We'll let you know.
Friday, February 27, 2004 9:51 PM CST i had my program today. it was fun. snowball is a good dog. i go to the hospital next week. i hope you like my slide show. let us know if it works for you. check out my smilequilt. (just click on the link below) brooke
Monday, February 23, 2004 10:39 AM CST im staying home today dr g said i can go to the hosptl next week so i wont miss my program mine program is about dogs i stayd home today cause i was to tired i love my dog snowball
Sunday, February 22, 2004 9:18 PM CST Brooke had her test Friday at the nuclear medicine facility at UNMC/Clarkson. We stopped at Children's 1st to get her IV in her arm and her port accessed. Brooke HATES getting the IV in her arm. She had to drink some stuff before the test to protect her thyroid. They had it in some water and for 45 min. we tried to talk her into drinking it. She finally got it down and threw it up, so they got her some chocolate milk to drink and had it mixed in that, she couldn't even tell. They had to put contrast in her IV and draw blood out of her port. When they started to draw blood, somehow it got a clot in the outside line. Brooke chewed the nurse out and told her "You should have flushed it!" They ended up having to re-access her port with a new and bigger needle. Brooke wasn't too happy about that. When we were finished with the first round we had a 3 hour break until the next blood draw. We stopped at Subway to get a sandwich and Brooke threw up in Subway. SO we got our sandwiches to go!!! When we got back to the hospital for 3 more draws with a 1/2 hour between each, things went a lot better. The one nurse even showed Brooke the secret code to get into the Hot Lab! Brooke will never forget it either! She now knows how they spin her blood and what it looks like when it is separated! When we got home there was a message that we are to go to clinic in the morning to be admitted. They were already gone for the day, but I am going to call them in the morning to see if there's any chance we can wait a week for her next round of chemo. If we have to go in tomorrow she will miss her school music program on Friday. The kindergartners will be singing puppy songs and wearing puppy ears. And Brooke loves puppies more than anyone I know, so I hate for her to miss it. So we will have to see! I will let you know how it goes.
Monday, February 16, 2004 8:09 PM CST Brooke hasn't did the kidney test yet. I will do it on Friday. I only have 2 days for radiation left. I do good. I didn't have school and I went to a movie with my friend stayed overnight too. Brooke put new pictures on her website. They're Snowball just in case you want to know what Snowball looks like. ( This journal entry was dictated by Brooke!)
Wednesday, February 11, 2004 6:18 PM CST Brooke finished her 6th radiation treatment this morning, but we've decided to do 5 more. They will be to her right side only because there was unfavorable histology on that side. The radiologist oncologist told us there is a 30% chance of recurrence on that side and if it would recur it would be untreatable. There have been no studies that show an increase in radiation would help decrease that chance, but they are thinking about doing a study to that effect to see if it would make a difference. So we said we want to go ahead and treat that side a little more. Monday we have to go to Clarkson Hospital to the Nuclear Medicine department and they are going to test her kidney function. Then maybe we will know when they can start her next chemotherapy treatment. I'm only hoping she won't be in the hospital on Feb. 27, that is the day of the elementary music program. You'll never believe Brooke's part- she gets to be a dog and sing puppy songs! Her one line is "ruff! ruff!"!!!
Tuesday, February 10, 2004 1:18 PM CST Brooke's radiation treatments are going well. This morning she had her treatment and still made it to school on time! The radiation has been making her sick, but if she takes Zofran before she goes in, she does OK. Sometimes she has to take some in the evenings, too. Tomorrow is her last scheduled treatment, but they may have to schedule 6 more because of the unfavorable histology on the right kidney. When they find out whether or not they need to do more they should know when she'll have her next chemo.
Wednesday, February 4, 2004 4:23 PM CST Today Brooke had her 1st radiation treatment. It went very well. She didn't need to be put to sleep and layed perfectly still like they told her to. She wanted to go to school so bad, and that is why she did it. So now she knows it won't be too bad. Yesterday she had her CAT scan for the mapping and they put her to sleep for that. She seemed to be scared yesterday so they had decided we would put her out for all of her treatments. We were very surprised this morning when she said she wanted to try it while she was awake! You never know about Brooke!! She did get an upset stomach and throw up after her treatment, so tomorrow I will give her some anti-nausea medicine before we go and she will be able to eat some toast or something. Hopefully she'll be OK so she can go straight to school when she's finished!
Saturday, January 31, 2004 1:51 PM CST Brooke has been home from the hospital 4 days now and is recovering extremely well. She has played out in the snow and was so excited to visit the school yesterday, she was practically running down the halls! We are going to try school on Monday morning! In the afternoon we will be going in for a blood check and a check up to make sure all is OK to go ahead and start radiation treatments. We saw the radiology oncologist Wednesday. We really liked Dr. Prows. Sometime this next week Brooke will probably start her radiation treatments. The first appointment will be for a CAT scan while Brooke is asleep so the mapping can be done where she needs treatment. They will be treating both the right and left sides. Brooke will have 6 radiation treatment; 6 days in a row. If she can lay on the table and hold still, it won't be a very long appointment. If she is scared and can't do it, she will need to be put out for these. We'll have to see how she does. I told her we were going to practice at home, but she doesn't want to! I'll let you know how it goes!!
Wednesday, January 28, 2004 10:05 AM CST We're home! Brooke is doing very well! Her urine output picked up and her chemistry's are looking good, so it lookes like she should be able to function with 1/2 a kidney! We have an appointment this afternoon with the radiation therapist. We know she is going to need some radiation and I think some more chemo. Hopefully we will know the new plan at the end of this week. The pathology report showed some bad cells at the margin where they took half the left kidney. They will also radiate the right side because they removed some lymph nodes there with that kidney that tested positive. Brooke is getting her thirst and appetite back and doing a very good job getting around and going up and down the stairs. I'm not sure when she'll be back to school. Maybe next week, and we might start with just an hour or two at first. Gavin got to spend Monday and Tuesday with us because there was no school ( we got about a foot of snow or more ). Brooke was afraid he was going to play outside in it without her! I told her it's too cold out! We got home Tuesday about 5:00 and boy did it feel good to be in our own beds! Brooke slept in until after 9 this morning! Thank you to everyone for all your phone calls, visits, prayers, and all the help you've offered to us! We couldn't do it without you!
Wednesday, January 21, 2004 3:35 PM CST I just ran home to be here for Gavin when he gets home from school and take him back to the hospital with me to see Brooke. When she woke up last night about 10:30 she asked to see Gavin. I told her he was home in bed because it was nighttime and he had to go to school. Then she asked if Miss Fahnholz could come see her!! So I thought I better update this quickly while I'm home here for a couple minutes. We got to the hospital about 1:00 and they took her into surgery at 3:00. They finished at 7:00, which is how long the surgeon thought it would take. They didn't need to give her blood, we were glad about. I guess there was quite a crew in the operating room, a couple of doctors have told us. They had to remove Brooke's right kidney and 1/2 of her left kidney. The surgeon thinks she will have enough kidney to function. They are really monitoring her kidney function right now. They put her in ICU after surgery and she will probably be in there tonight still and moved to a regular room tomorrow. She is hooked up to a lot of tubes right now. She only wakes up for a little bit at a time, but says there are no owies. She is on a morphine drip with a hand pump, if she has any pain she can push the button and get more. She did wake up long enough this afternoon for me to read her a book and she watched the TV for a while. But it hasn't even been 24 hrs. since they finished surgery, so I think it's going to be a long week. She has an incision that goes all the way across her tummy, from one side to the other. When she really wakes up and is much more alert, she is not going to be happy about all those tubes and that incision. But I think they'll do a good job of keeping her comfortable. I will try to keep you updated with any new news.
Tuesday, January 20, 2004 8:10 AM CST Hello Everyone,
We just found out late yesterday that Brooke will be having her surgery today. It is scheduled for 3:00 and will take about 5 hours. They are going to remove her right kidney and the tumor on the left kidney. She will probably be in the hospital for about a week. It is going to be a long day. Nick talked to the surgeon on the phone yesterday, so we will find out more today when we go in. Not sure when I will be able to update this, but will try to let you know how it all goes.
Tuesday, January 13, 2004 9:27 PM CST We went in for a blood check today. Brooke's counts are good, but no news on what's next yet. The surgeons haven't gotten back to the Doctor's yet, so we're still waiting to see what we have to do next. Probably either surgery or more chemotherapy. I'll let you know when we find out.
Friday, January 9, 2004 6:02 PM CST Hi everyone. Just a quick update. Brooke had her scans today and it looks like there was more shrinkage. We don't know exactly how much, they couldn't really measure it because she was crying and her tummy was shaking when they did them. So now the Dr. needs to look at them with the pediatric surgeon and see if they think it's time for surgery or if she needs to have some more chemo first. Tuesday we will go in for a blood check and hopefully they will have the new game plan. I will try to update again when we know what that is!
Tuesday, December 30, 2003 12:59 AM CST We hope everyone is having a good holiday season. We celebrated X-mas at home and with the Brion's so far. We will get together with the Kirwan's on Friday night. Now I just have to figure out where to put all this stuff! Brooke was in for treatment Dec. 22,23, &24. We were home about noon on Christmas Eve, so that wasn't too bad. She was tired again at the hospital. Of course Alicia let her make cut-out sugar cookies. She has fun doing that. We had to let them cool before she could frost them so we went back to her room. Then a harp player came and was playing beautiful harp music out in the hall by the nurses station. So we took her cookies out and sat at the nurses station and frosted and decorated Christmas cookies with live Christmas harp music. That was a pretty good deal!
Santa came to her room and brought her a cardinal beanie baby. He stayed a while and recited "Twas the night before Christmas" to Brooke. Gavin couldn't come to the hospital to hang out with us this time. They weren't letting anyone under 14 in the hospital because of all the flu going around. Both the kids were upset that he couldn't visit.
Brooke got her first blood transfusion the week before her treatment. She also got platelets. I couldn't believe how good she felt after she got it. I didn't realize how tired she probably had been. And the whining even stopped for about a day! She got sick once after we got home from her treatment. That's what happened last time, too. I have Zofran on hand to help keep the nausea down and that's what they give her at the hospital,too.
Brooke's next CAT scan is scheduled for Jan. 9. We will know more then.
Thursday, December 4, 2003 2:44 PM CST
Brooke had her new CAT scan on Monday, Dec. 1. Dr. Gnarra said the tumors are shrinking, but not enough to do surgery yet. So she was admitted into the hospital for 3 days of treatment and we got home Wednesday about 5:00. Those 3 days went really fast compared to 5 days. Brooke was tired and slept alot this time,but did manage to do a few fun things while there. On Tuesday, Alicia let her make chocolate chip cookies. On Wednesday we went to the lobby for a Christmas concert put on by the Northwest High School swing choir. They were very good. Monday night there was a children's choir singing Christmas songs in the lobby. Se we had some entertainment this week. Brooke will be back for more chemotherapy Dec. 22 - 24. We will be home for Christmas eve. We were sorry to find out that Brooke's friend Alicia from 5th floor is moving to Colorado after the holidays. We will really miss her. She makes Brooke's stays at the hospital fun. Brooke's next CAT scan will be Jan. 9.
Tuesday, November 18, 2003 3:05 PM CST We are home after another week in the hospital. Brooke was there from Nov.10 to Nov. 14. She received the same treatment as a couple weeks ago. Her next CAT scan will be on Dec. 1. That's probably when I will update this again. Brooke got to do some fun things in the hospital and also had a couple rough days. We think she might have had a touch of the flu because she got sick right away when we got in the hospital on Monday, and there's alot of that going around right now. Tuesday night Buffalo Wild Wings catered in wings and other food for us and we had a little party. Buffalo Wild Wings and Picotte elementary did a fundraiser for St. Jude's child cancer research and the students raised over $1,600 for St. Jude's. Buffalo Wild Wings wanted to do something for Brooke and that is why we had the little party! My Mom came Tuesday night to spend the rest of the week helping us. Wednesday I picked Gavin up from school and stopped by Brooke's friend Cassie's house to surprise Brooke with a visit. So Cassie got to come up to the hospital for a couple hours and boy did Brooke enjoy that! Thursday, Gavin came home from school early not feeling well, so Grandma stayed home with him on Friday. Grandpa came to the hospital Friday morning and spent the day with Brooke. That is the day she got to go to the play room and make cupcakes. They have discovered what a good cook she is! We got to come home Friday evening and were glad to be back in our own beds! And Snowball was happy to have Brooke home!!
Tuesday, November 4, 2003 9:00 PM CST HI everyone! I've decided to do a little updating and see if I can change some photos also. I am kind of getting this figured out! Brooke got really good at getting her shots. The last couple times she never even made a sound and just sat on her hands. Monday we went in to get her blood checked and her counts were so good we get to stop the neupogen shots for now. So next week we will be checking into the hospital on Monday if her counts are still good. We will be there all week for another round of treatments. On Halloween we had to go to the hospital for a blood check also and it was a great day to go up there. There was a halloween party in the lobby with face painting, pumpkin decorating, cookies and punch, trick or treating, a costume parade, staff costume contest, and Chip Davis from Manheim Steamrollers read a book to the kids! So we had fun! Brooke wore Gavin's costume from last year and she asked me why everyone thought she was a boy! I did make her wear her pink Barbie tennis shoes, but I guess that wasn't enough. She got interviewed for the Channel 7 news, but Gavin did most of the talking. We don't know if it was on or not. We missed the 6:00 news because of the excitement of trick-or-treating and it wasn't on at 10. So we don't know. After next week sometime they will do another CAT scan to see if the tumors are shrinking. I'm not sure when that will be, but we will let you know when we find anything out. We are overwhelmed by all the people who have visited Brooke's website. Thank you for all your prayers. We love hearing from everyone who signs the guest book. Thank You!!!
Monday, October 27, 2003 10:35 AM CST We are home now after a week in the hospital. Brooke went in on Monday morning and we came home about 9:00 Friday night. Brooke really missed Snowball and he really missed her! They kept her really busy at the hospital though. One day she even got to make chocolate chip cookies! She made play-doh, did marble art, made a fancy mask, painted her room windows and played alot of games and read alot of books! She never got sick from her treatments so that was good. On Thursday, the candy man comes around with a candy cart and then some volunteers come with their dogs. The dogs are the highlight of her week! We had a good room this time, only because we could see the oncology clinic across the way. So a couple times we had to call over there and wave to Christy who is the child life specialist at the clinic. Alicia is the child life specialist on 5th floor where we were last week. Brooke had fun calling people on the phone a few times. She left alot of messages on the machine at home! She likes to sit in her hospital bed with it as high as it can go. So now she makes Anisa(one of the onocolgy nurses) sit on the edge of the bed to go up, and then makes her jump off! Saturday the home health nurse came out to show me how to give Brooke shots in her legs. We have to start doing that every day to keep her white blood cell counts up. She tried to hide and get away on Saturday, but yesterday she didn't run and hide. I know it stings when I give it to her, but she's doing a pretty good job. If her counts are OK, we will be doing another round of treatment in a couple weeks and then another CAT scan. So we will let you know if we have any new news.
Saturday, October 18, 2003 9:41 PM CDT I'm finally going to update Brooke's webpage. I was going to add some new pictures, but I can't remember exactly how I did that before! I'll keep working on that! That's how good I am at the computer and why it has taken me so long to do this! Plus you have to be in the right mood.
We've had some changes and a new treatment plan. But the first change we've had is a nice one. We have a new puppy at our house and Brooke is in heaven. Her Dad is having a hard time having a dog in the house that isn't housebroken yet, but we'll get there! Brooke has wanted a dog for years. When she was 2 or 3 she use to tell everyone that she had a puppy in her tummy. We got Snowball from my Aunt and Uncle. He is a toy American Eskimo and is a really great dog. He's about 4 months old,all white and very cute. I'll try to get a picture of him on here!
Anyway,Brooke had another CT scan on Friday, Oct. 10. The doctors found out the tumors had grown. Especially the one on the right side. It is very aggressive. She had bilateral renal biopsiew done on Oct. 15. It was suppose to be an outpatient visit, but we ended up having to spend the night.
On Friday, Dr. Gnarra called and said we will have to start some more aggressive therapy. We need to check into the hospital on Monday morning and will be there until either Friday night or Saturday morning. And then we will do this again in about 3 more weeks, depending on her blood counts. He told me her white blood cell count will go way down and we will have to start giving her shots every day at home for that and we'll have to go in a couple times a week to get her blood checked. She won't be too happy about that. Last time she had to get her finger poked, I had to chase her around the room and crawl under a table to get her out! She's a very strong willed girl.
The day they did her CT scan, Brooke was missing out on her 1st kindergarten field trip. She's usually very good, but boy she did not want to spend the day at the hospital that day. We were there all day because they also had to do an EKG and echo, they were going to give her a treatment and she also got a flu shot. She was not a happy camper, and I didn't blame her.
When I found out they were going to do the biopsies, I told them we couldn't do them on Tuesday. So she got to go to the pumpkin patch with her class. I went along to help and it turned out to be a beautiful day.
The only other thing I can think of right now is what Gavin did. I took him in to get his hair cut the other day and he told the lady that he wanted it like Brooke's. So he got his head shaved! I didn't realize how much they could look alike! Anyway, he's been a very good big brother to her.
I will try to keep this updated better when I find anything out, or just to let you know how Brooke is feeling.
Tuesday, August 26, 2003 10:29 AM CDT On Friday, August 22, Brooke had her 1st CAT scan since her diagnosis on July 15. Our Oncologist said her tumors are shrinking and he wants to continue the treatment they are giving her and do another scan in about 6 weeks.
She hasn't lost her hair yet, but it is starting to really thin out. Brooke is still feeling really good and kindergarten starts tomorrow!
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