COOKIE...Some thoughts after one day at home....6/22/06

Dearest Friends and Family,
While doing dishes this evening (Thursday), I had some thoughts and felt like sharing them with you. Having missed 1/2 of our family for 66 days and having them home for one day, I can't believe how important so many small things have become.

I've spent the last 66 days intimately close to my grandson, Parker. He was five in May. Do you think he'll remember cuddling with me in my bed every night before he went to sleep? Do you think he'll remember the stories we read together every single night? I know that I'll remember how it felt to wake with his face so very close to mine. I loved listening to him breathing and give in to the kiss that those soft, beautiful cheeks were begging me for.

I know that COOKIE will remember spending a very intimate 66 days with her MoM at UCLA. I know that COOKIE will remember the intense and loving care that her mommy and daddy were able to give her. I know COOKIE will remember being nursed back to health with the loving, hands on support that her parents were able to give her.

Auntie Shannon, having no children of her own, went into INTENSE nephew training and bonded with Parker so completely. I watched her grow as a woman and Parker gained all of the love and support he needed during this ordeal.

Grammy and Grandpa (Matt's folks) have been so involved and so supportive and we're very grateful for the bonding that's taken place. It takes a TEAM of devoted, loving grandparents to achieve accomplishments such as we have. We're a very diverse and talented team and this family reaps the benefits of all of it. How cool is that?

Can you imagine being locked in a 10x12 room for 66 days with your spouse under the most adverse, life threatening conditions and come out still loving, still talking, still married? Shelee and Matt get the award for "TOLERANCE of the YEAR, 2006"!

The small things? Teaching a 5 year old to wash hands, constantly......and watching him remember ON HIS OWN! Watching the children you love so dearly sleeping. Being able to reach and almost TOUCH the love in the room. Hearing Parker ask COOKIE if she needs anything. We've ALL grown and learned so much over the last 66 days. I hope and pray that it will stay with us. The feeling, the knowledge, the conviction that we can face, and conquer, anything that life throws at us.

We have been blessed with virtually hundreds of cards, letters and well wishes from people all over the United States that we've never met. We are so very, very grateful for the love and support that we've been given. We have a very long road yet to travel but we'll do it with pride and dignity in the knowledge that we overcame some very difficult obstacles. Thank you, folks, for sticking with us and sharing with us and thinking of us every day.

The new schedule for COOKIE is Home Health comes to the house every Monday and Thursday to draw COOKIE's blood. It's sent to the lab immediately and the results are had by the doctor the next day. COOKIE has a standing appointment with our Dr. Moore (UCLA) every Tuesday at 8:30am. And, depending on the results of Thursday's blood tests, possibly on Friday also. Wednesday's are free days. COOKIE remains on a low bacteria diet. She's taking meds 3 times a day, 32 pills at 10:00, about 10 at 2:00pm and a bunch more at 10:00pm every day. By the end of July, her diet will change somewhat and she may be able to venture out to more places. Outside places are ok right now as long as she is out of the sun and in a wheelchair. Piece o' cake, right COOK?

Tomorrow is her first doctor's visit. Mommy, Daddy and COOKIE will be leaving at 7:00am in order to get to UCLA by 8:30. Stay tuned to see how it goes.

I hope I haven't bored you with my mush but sometimes I just have to put it in writing. Thanks for being such a good captive audience.
Wishing you all well,
Cookie, The Grandma

COOKIE - HOME!!!!! 06/21/06

Dearest Friends and Family,
The day we've all been waiting for is here! COOKIE is coming home! We're waiting patiently, Aunt Shannon and I, at home, for the call. They're just getting all of the final details ironed out and they're on their way! Parker is at the hospital with them so the little family will leave as they should, as a family.

Our neighbor brought over a helium tank and there are balloons all over our yards, front and back! We're ready!!!!!!!

Come on home, kids. You've been missed and thought of every second of every day for the last 66 days.

Thank you, ALL OF YOU, for your continued support and kind words during the last couple of months. It's far from over but everything is better when you're home. We have a long road ahead of us but it's a cakewalk compared to where we've all been, especially COOKIE, Shelee and Matt.

Our love and best wishes to all of you and your families! I plan to keep the blog updated, at least once a week.

With love and sincere gratitude,
Cookie, The Grandma

COOKIE-A Week's Worth of News, Tues., 6-13-06

Dearest Friends and Family,
I hope this BLOG finds everyone healthy and happy! All is, well, all is well. We're on the "cell count roller coaster" and hanging on! Up! Down. Up! Down. Up! Today they're up....again! That's how we like it! COOKIE got platelets AND red blood cells this morning. Shelee just called but my girl is still sleeping. She's such a nightowl. The doctor's say we're doing well so my advise to COOKIE and Shelee is to try to take it ONE DAY AT A TIME. Try not to speculate about next week or the week after. Of course, I have to take my own advise but it's good stuff. Don't you agree? Day 57 in the hospital, Day +47, post transplant.

The pictures...I don't really have a choice how the "blog" arranges them so I'll just tell you about them....
One of the pics is of Aunt Shannon's bday celebration in COOKIE's room at the hospital. She's such a gift to us. Doesn't she LOOK like a gift? :)

Another pic is Matt trying to beat the camera. He set it up to take an automatic picture and he was racing around the bed to be in the picture. Good job, Mr. Photographer! :)

Another pic is of a couple of the nurses on the floor. They decided to have "Karaoke Friday" and we had our door open for just a couple of minutes. It was all we could take. They had fun though and that's all that matters. Anything for smiles! :)

The other pic is of COOKIE catching a few winks on Saturday. In honor of the Jonathan Jaques Champions Run for Life Torch Run, taking place in Long Beach WITHOUT US, COOKIE, Shelee and Matt all worn their Torch Run Red t-shirts all day. COOK was little sleepy.

The last picture is of COOKIE and her "girls", Kit and Molly. A friend of Grammy's makes American Girl doll clothes and sent COOKIE a box FULL of new and beautiful things. The girls are wearing their new nightgowns! I don't know who was more excited, COOKIE or me.

As luck would have it, one of COOKIE's tutors in the hospital has a relative that works for The American Girl Place at The Grove in Los Angeles. She sent COOKIE a new outfit for Kit, scooter and all!

There's a fundraiser coming up for COOKIE that's being put on by a music promoter. She promotes young bands and they're going to be playing at the Torrance/Lomita Alano Club, corner of Arlington and Carson, on July 8th. Tickets are $7.00 per person. There's going to be 5 bands playing. I'll give more details as I get them for anyone interested in going. It's probably going to be a little loud and not necessarily easy listening music! :)

Have a good week and take care of one another. We only get this one chance to DO good and BE good. Love to all,
Cookie, The Grandma

COOKIE's Success, as of Friday, 06-09-06

Dearest Friends and Family,
Now, Class, as you know, over the past two months, we've been discussing Bone Marrow Transplant for Beginners. We're now ready to move into the Intermediate portion of our studies. Our subject, said 10 year old COOKIE, has successfully put her most important wish thus far into action....her counts are coming up! Yes, Folks, her counts are on the rise and there's no telling how far or how fast they'll rise!

We have neutrophils! We have monocytes! We have an ANC! Now I know that we haven't studied these things but as your teacher, I'm asking you to trust me and simply to jump around wildly, clapping your hands and whoooping at the top of your lungs because what all of this means is that COOKIE's adorable little body is producing all the stuff necessary to make bone marrow and to keep her healthy and to COME HOME SOON!

Simply put, they're gradually reducing her IV intake, eventually to take her off of IV completely. They will be discontinuing the nightly neupogen injections in her legs. They've already taken her off of a couple of her antibiotics. All of this to see if COOKIE's adorable little body can maintain itself and continue to produce white blood cells!

My family may be home as soon as 2-3 weeks! COOKIE has her mind set that she'll be home in time for the release of Pirates of the Carribean II movie on July 7th! My money is on COOKIE!

Tomorrow is Miller Children's Hospital Jonathan Jaques Annual "Champions Run for Life TORCH RUN"! Many of you have supported our sponsorship for this event for the past 9 years. This will be the first one we've missed! I did, however, go to Long Beach and pick up our t-shirts. I took them to the hospital last Wednesday and we all changed into them and took the picture you see! I brought the pics home with me and made a poster for the Torch Run. Our dear friend, Allison, Child Life Specialist at Miller's, will set the poster up in the exact spot that we always "make camp" for the run. GO CHAMPIONS! OUR HEARTS AND OUR SPIRITS ARE WITH YOU TOMORROW!!!!

Well, the cards and letters are still pouring in from last weekends FUNdraiser/Yard Sale! We're still not recooperated, at least I'm not! I haven't worked that hard in a very long time! We've gotten SO much response to the ad that was in the Daily Breeze! To all of you, once again, that donated, that participated in any way, we can NOT thank you enough! It was a spectacular event and we will always remember it! So will our neighbors! We ruined all of their lawns! Sorry, my friends. The videos that Matt and I took periodically throughout the day are wonderful! It's like reliving the fun! xoxoxo to all!

We celebrated Aunt Shannon's birthday at the hospital on Wednesday. She's very grateful for having a birthday but she just doesn't want to COUNT them anymore. Thanks, Shannon! How do you think I FEEL???? Ha! I'm 20 years older than you, my beautiful girl! My body reminds me every day! (but i can still keep up out of sheer determination......if it kills me.)

Our boy Parker is doing very well. We're going to meet Daddy at his school this morning and he'll help him work for a little while today and then they have a date at the movies to see "CARS"! He's very excited! I can't tell what he's most excited about....going to help Dad show the class how to launch rockets or going to see the movie he's been waiting for! Either way, he's in for a great day with his dad!

I'm on my way to UCLA, of course. We have a TON of thank you's to write and it will be nice to spend the day with Shelee and COOKIE. Aunt Shannon went home for a couple of days. Yes, she actually left me on my own. uh oh.

I hope this blog puts a smile on your face and a light in your heart. Today is a good day and we'll take it!
Much love to all,
Cookie, The Grandma

COOKIE's FUNdraiser Weekend 6-3-06

Dearest Friends and Family,
WHAT A GREAT DAY WE HAD!!!! TONS o' work, TONS o' stuff, and TONS o' wonderful, beautiful people to shop and eat and drink with us! We had people from all over, all walks of life and for all reasons. We had something to offer EVERYONE, from toys to electronics to beds to clothes of all sizes and styles. We had friends, relatives and as the day worn on, we made new friends. It was the hottest day of the year and we were fighting over the shade that one little umbrella could provide once we got into the afternoon hours. We were open for business until about 4:30pm. At that point, we picked our tired butts up and began packing everything for it's final transportation. We had about 50 bags of clothes left that were picked up by a church that will donate them to a mission in Mexico. We filled three truckloads of boxes and took them to the Goodwill. Believe it or not, with that much left over, we sold about 3 times as much as that! But above what we made in money, we had a really, REALLY FUN day! Thank goodness there were a lot of us to work the event because we were inundated with about 30 people from 6:30am, continuing throughout the day! We had bbq'd hot dogs cooked on our neighbor John's NEW bbq. We had delicious taco boats made with Fritos and canned chili from Costco. We had cold, sweet lemonade poured by none other than our Parker (and whenever he got bored, any of the other neighbor kids that jumped at the chance to do the honors!). AND, we had so many baked goods that we ended up giving boxes of them away! King's Hawaiian donated 3 large boxes! Cookie's Girl Scout Troop was responsible for getting those for us! Ramona's Bakery donated boxes and boxes of cakes and cookies and muffins too!

Our neighborhood Fire Station came by in the afternoon looking for Parker. They put cones in the street and let all the kids have a turn at spraying water all over the street and at each other! Parker was too shy to go out there but the kids all had a blast and he enjoyed watching them.

We had people drive up and get out simply to give a donation. One young man pulled up on a great big red motorcycle. He had a big gray beard down to the middle of his chest and he was fully decked out in his motorcycle garb. He parked right in front of the yard sale, walked up to our "cash guy" and gave a donation and turned around and walked back to his motorcycle. Everyone just stopped and watched him and they all began clapping and cheering as he got back on his bike and rode away, waving. It was a really cool moment.

Bottom line, we sold a lot of stuff, we gave away a lot of stuff and we made a lot of money for all of our hard work. I, personally, cannot say thank you enough to all of the folks that donated their "treasures", helped unload boxes, and worked their tails off for US. Thank you, thank you, thank you. We are SO blessed and we KNOW IT!

The call came in to us at about 10:00am that COOKIE's counts were coming up! COOKIE is making WHITE BLOOD CELLS! COOKIE and Shelee were on the phone with me and we were all crying as I shared the news with everyone gathered around me. At the FUNdraiser, we had a dvd continuously playing that COOKIE had made the night before. She said that she was sorry she couldn't be there because "she was busy trying to make white blood cells"! Well, she did it. We're on the rise and there's no stopping her now!

COOKIE's other grandma, "Grammy", came by the FUNdraiser, took some really cute pictures to take to the hospital and went to have lunch and spend the afternoon with Shelee and COOKIE. They had a great afternoon. Grammy is a very talented artist and she brought some embossing for COOKIE to do her own personal trading cards and thank you notes. They had a so much fun and it took their minds off of not being able to participate in the FUNdraiser with us. That's what I call teamwork.

We got the opportunity to go to the hospital today (Monday) and Parker and COOKIE got to spend some quality time together again. This time without masks. Look at those smiling faces. They are so absolutely adorable together. Ahhhh, if only it would last forever. :)

This is a "good news" blog. It's been one wonderful thing after another this entire weekend. We are moved beyond just words at how lucky and special we all feel. It makes all of the hardship and anguish seem small compared to how full our hearts are this very night. Thank you, one and all, for caring and sharing with this family. Our goal is to overcome this obstacle and give back to whomever we can throughout our lives. We're surrounded with love and generosity and we truly know that we could not endure this without everything you've given to us.

God bless you and yours. I'll be back soon with more update on my girl....
Lovingly yours,
Cookie, The Grandma