COOKIE - School's OUT for Summer! 06-25-07

Dearest Friends and Family,
Hopefully everyone survived the season! Graduations, retirements, kids out of school! It's been a whirlwind around this house! Good bye to Dr. Sam, COOKIE's graduation to Middle School, Parker graduated to 1st grade, Parker had sinus surgery, Matt starts Summer School and we're all looking forward to the 4th of July BBQ in the front yard with the neighbors!

Ok. That's it in a nutshell. Have a great summer!

hahahaha! Have you ever know me to say so little???????? Huh? Come on!

Saying good bye to Dr. Sam was extremely bittersweet for my Shelee and COOKIE. He was so very gracious and sweet and he gave COOKIE a card with some very loving thoughts that he had written. They in turn gave him a note and framed pictures of the two of them. He was fighting back tears as well as COOKIE and Shelee but in the midst of it all, Dr. Feig came in to handle the medical part of the visit. :)

COOKIE's skin condition continues. Her extremities are covered in what looks like peeling from a sunburn. Her right hand, which is the one they did the biopsy on, is still a little red and inflammed but the inflammation had traveled up to her forearm. The doctor's concur that it's a reaction to medication and they will begin a new treatment that consists of a monthly transfusion. She will no longer take the medication that is causing her such problems. It has made her so extremely sun sensitive that she cannot go outside without being covered up and under an umbrella, even with SPF 50 on! She'll get her first tranfusion tomorrow, Tuesday. Of course this means a delay in getting her lines taken out which means no swimming yet. She was really hoping that she'd be able to swim. Her cousin, Ashley, is coming to visit for a couple of weeks and the beach and swimming at Aunt Shannon's was something COOKIE was hoping for. Thankfully, the condition is temporary and the summer is long!

COOKIE's appetite is still very sporadic. One day she eats, the next day not so much. I wish I was like that! hahahaha
Basically, she's doing really well and we're as thankful as we can be.

She was invited to participate in the 5th grade graduation ceremony at Parker's school with what would have been her class. She's was very excited to to this! COOKIE has given speeches at this school several times and all of the kids know who she is. They treat her like somewhat of a celebrity (well, isn't SHE?) and it was thrilling to see her go up on the stage and receive her certificate! Lots of cheers and tears! She's got her mind set to start Madronna Middle School in the Fall.

The same day, COOKIE had her last class with Miss Dena, her tutor. She's become a dear friend and we're sure to see her over the summer. Her son, Daylan, and Parker will be friends but more than that, she's a wonderful teacher and COOKIE learned SOOOOO much from her.

Parker actually made it through an entire year of Kindergarten! YIPEE!!!!!!! We're all going to miss Ms. Wilson though! I'm sure we'll see her around town. She was actually named Teacher of the Year for the entire Torrance Unified School District! She received a brand new Saturn from Saturn of Torrance! You should see the stuff Parker brought home from his first year in school! I know that it's a year he will remember the rest of his life! He was SO lucky to be one of 20 in Room 13!

Sinus surgery went waaayyyyyy better than we expected! He's been suffering for so long and we truly underestimated his ability to be just like his big sister! Well, folks, he pulled it off. He stuck his arm right out there to get the pinch and iv started and came out of it groggy but strong. He bounced right back the same day after all of the meds cleared his head. What a trooper! Of course the first thing he wanted to know was when and what he could eat! They had to be at the hospital at 8:30am and he didn't go into surgery until 1:30pm. That's a really long time to be without food for a little boy!

Well, Uncle Christopher's daughter is arriving this Thursday and we're all very excited to have her. She's the same age as COOKIE and they get on the phone and just chit chat away! The 4th of July BBQ is a tradition for us and we're all looking forward to dragging the bbq out front, putting the up the cabana's, chairs and tables, and just sitting around with our wonderful neighbors and friends! The block is closed so the kids can ride their bikes in the street and just relax and have fun! We watch the fireworks from Wilson Park at 9:00, sitting on chairs in our own yard! It's a great way to spend a summer afternoon! The next day Aunt Shannon and Uncle Johnny are heading back home to Palm Desert and taking Parker with them. He's really excited about this and so is COOKIE! Her and Ashley will have some girl time!

Today is Matt's first day of summer school! Yeah! He's really got his work cut out for him though. He's teaching English and Language Arts, not exactly his fields of expertise! Afterall, he's a technology teacher! He was up until all hours last night studying so he can impart bits of wisdom to his new batch of students! He's just thankful it's only for 6 weeks!!!

Well, all is well and "normal" on this end. I hope this BLOG finds all of you feeling free and healthy and looking forward to a summer of fun!
Much love, as always,
Cookie, The Grandma

COOKIE - 2007 Champions Run for Life TORCH RUN

Dearest Friends and Family,
Hasn’t the weather been fantastic??? We couldn’t have ordered a prettier day for the Torch Run! When the sun is shining, you can do anything! Hence, one of the main reasons for living in beautiful Southern California, RIGHT?

Since the last time I wrote, COOKIE has both progressed and experienced more problems with her hands. Her progress includes being taken off of Prednisone!!! Now, if you’ve been reading this blog, you understand what a big deal this is!!! She’s been on steroids for a very, very long time and has come close to being weaned off but suffered too many side effects wherein the dose was increased again and again. Well, she’s reached her goal of NO MORE STEROIDS!!! We’re so excited for her! Next is the last of the anti-rejection medications and look out world!!! Unfortunately, the problem with COOKIE’s hands worsened, especially the right one. So much so that she said they felt like they were hot and burning. Shelee took her back to UCLA on Friday and she was seen by several doctors, one being a dermatologist. They did a biopsy on her right hand and gave her two stitches.

The very next day, her left hand looked much better. Both hands began peeling, as if burned. Since the transplant, COOKIE’s entire body has actually peeled. All of her skin is new skin. The doctor’s were really puzzled over her hands. She returned to the doctor’s last Tuesday and the results of the biopsy were inconclusive. GOOD NEWS? Her hands are better. She’ll get her stitches out this Friday. The doctor’s seem to think that her hand condition is a reaction of one of the other very potent medications that they just changed.

I have to include some personal thoughts on all this. First of all, I’ve said it before. You just never know. Just when you think it’s safe to go back in the water! Our girl is so delicate and yet the strongest little human being I’ve ever known. She faces everything with such poise and resolve and I can only hope to be like her. I’m forever thankful that this little girl is ours. We’re making GIANT leaps towards recovery and she’s really seeing the light at the end of this tumultuous tunnel.

Secondly, I have to talk about our wonderful, beautiful, caring and generous Dr. Sam. He took COOKIE under his wing just prior to her coming home from the hospital post transplant. He goes above and beyond the call of duty so much that it continues to impress us. We hold him, his opinions and decisions in high esteem. He’s completely endeared himself to us and us to him. Sadly, for us, he’s leaving UCLA to work at Children’s Hospital of Orange County. COOKIE will be seeing him only one more time. This doctor has given Shelee access to reaching him any time of day or night and is constantly calling to check on COOKIE and her progress. I’ve put a picture of him on this blog to honor the care we’ve received and the lasting relationship that we’ve formed. Dr. Sam is a very unique man and is going to have a very successful and fulfilling career. There are so many children waiting for him at CHOC that will come to know the extraordinary doctor that we call Dr. Sam.

More news…..Parker is completing his first year in school! Yeah! He made it! WE made it! I have to acknowledge the perseverance and faith of his MoM and his extremely unique and loving teacher, Ms. Wilson. If ever there was a woman who found her calling in life, it’s Ms. Wilson. Parker has grown and thrived in an atmosphere of creativity and love and we, as a family, will be forever in her debt for making our boy’s first year in school one he will never, ever forget!!! Neither will the rest of us!

Ok! TORCH RUN, 2007!

It was a little hazy but it was only 7:30AM on Saturday, June 09, 2007. We arrived at the park by 8:00AM and as expected, there was a sea of dark blue t-shirts all over! The stands were up at each station and people were signing in and getting their station assignments!

We lugged our table, tent, umbrellas, chairs, cooler, bags, and STUFF to our favorite spot at Station One.

(Last week, I sent out an email to a couple of friends asking if anyone knew where I could get a banner made…..for cheap. One of my friends sent an email back suggesting that I call a sign company and ask if they’d donate a banner! Why didn’t I think of that?! Well, the very first place I called said YES! I went to see them and we picked out the artwork, which they later emailed to me for approval. I picked the banner up on Friday! THANK YOU SIGNS-A-RAMA!!!!!)

We set up our easy-up (tent) and our chairs and settled in for one of our favorite events of the year. As we neared the 10:00 hour, people were pouring into the park and all of our family and friends were arriving and getting set up. COOKIE was so excited to have her cousin Keli and her friend Madison to share the day with. Parker had his friends Daylon and Bryson. COOKIE was to be runner #36 at Station One.

10:00 SHARP the first runner and their group of family and friends takes off from our station and runs their 1/8 mile to Station Two, where THEIR first runner takes off. That’s how it goes for a couple of hours until all runners have had their turn.
Our job throughout is to stand at the sidelines and CHEER as loud as possible for the runner coming around the corner to end their run and that’s how it goes all the way around the entire oval shaped park.

The sun came out and the excitement of the race was in the air! This year we had several folks with us for the first time and that lends excitement of it’s own. It’s so cool to share this event with people you love and who have given you love and support throughout the year. I’m always saying how grateful we are and this event says THANK YOU in such a big way. Cheering for these kids, catching glimpses of their struggles and triumphs as they run by, carrying the torch, is so completely overwhelming that you HAVE to experience it to understand the emotion. Many of the kids are actually bolstered on both sides by their family and friends as they run or, in some cases, walk to the next station but you can also see the determination on their sweet faces.

HOPE lives and it’s never more evident than at this wonderful race! We cheered and clapped until we were hoarse! Then, it was our turn to run!

I will admit that I went around to everyone to try to convince them that they needed to stay behind me so I wouldn’t be the last one to arrive! Hahahahaha! Well, we did one last cheer and off we went! The BIGGEST group we’ve ever had! There were about 35 of us, some in strollers, some carrying posters. COOKIE, Parker and the rest of the kids took off like a shot! I’m proud to say that I was NOT the last one and I’m thankful to both of my sisters and my friends for making sure that didn’t happen! Hahahaha! The picture speaks for itself. It was a great 1/8 mile race and it felt like 10 miles! One of the main things that propels me to the finish is our beloved Dr. Finklestein on the sidelines, every single year, cheering me on……”Good job, Grandma!” It’s one of the reasons I do this. As most of you know, I was not blessed with a runner’s body but run I did and I’m so proud of all of us once we’ve had our turn! THANK YOU! THANK YOU! THANK YOU ALL for rounding out our family of support!

Seeing SO many of the nurses that we fell in love with over the years from Miller’s Children’s Hospital was so special to each of us! They’re truly our extended family and have known us and cared for our girl throughout some of our lowest points in the last 9 years. Our hearts will forever belong to them.

The 2nd Street Band of Long Beach started playing for all to enjoy and we all sat and had our picnic lunches. Afterwards, the kids got to play games and won tons of great prizes! In the meantime, my sister and I raced over to where the band was playing because I cannot resist the opportunity to dance to “I WILL SURVIVE!”

It was a glorious afternoon and us diehards did not leave the park until 5:30PM. A handful of us stayed and visited and laughed with the kids. Can you say “PERFECT DAY”?

I want to say thank you to those of you that came up to me and commented about reading this blog. Thank you so much for your kinds words and for caring so much about this family. We wish you all love and health and good things, always!

With love, and gratitude, and best wishes to you all,
Cookie, The Grandma