Cookie Day One

Dearest Friends and Family,
Well, we made it through one of the most trying days of our lives yesterday. We left the most intrigal part of our family at UCLA last night. I'll give you a brief little summary of how the day went.....

We all woke at our planned time, left the house at 10:00 and went to "Chenny's" (Denny's....it's Parker's name for the restaurant) for breakfast. We joked, we laughed and we swallowed hard. We were back on the road by 11:30 and went straight to UCLA Parking Lot 36 where the motorhome is parked. We unloaded a few things and showed Cookie and Parker around. Specifically so Cookie would have a mental picture of where we would be and so Parker would get a little acquainted with the place. He is the keeper of the stairs and the doorkey to get in. Very important jobs.

12:15...time to go. We had a CAR LOAD of stuff to take into the hospital. After all, we were moving in. We parked in the underground "Admissions" parking lot and proceeded to unload so we could park the cars. That done, we loaded our cart and our arms and began the long walk into the bowels of UCLA Main Hospital, still unsure where Mattel Childrens Hospital is, exactly. BUT, I asked directions and off we went, like a well oiled machine. Ha! Hardly! We had to stop to adjust our bundles and make sure Cookie and Parker were still with us. It was laughable, thankfully.

We found the elevator and took it up to the 1st floor, Admissions. Dropped our "stuff" and hurried up and waited, for 45 minutes. People Watching at it's best. Both Cookie and Parker were so patient. (Off of the subject for a moment, the night before Parker had the need for all of us to hold hands and a say a "pray" before dinner. He insisted that we all say something so we went around the circle and asked for strength, success, love and most of all TOLERANCE. Parker asked that Cookie and Mommy could just stay home and that Cookie not have Leukemia but I think his is the only wish that could not be granted.) Once we got the paperwork in order, we picked up our loads, uniformly and orderly as when we entered, and followed the little pinched-faced lady to the OTHER elevators and up to the 3rd floor to the "Transplant/Critical Unit" of Mattel Childrens Hospital. As soon as we entered the doors, there were expectant, smiling nurses and aides that lead us to "our" room, Room 324. We all walked in ALL of our mouths dropped open. Our nurse, Tammy, was a doll. She began talking and we just stood there. She finally left the room and we stood in place, turning circles, our arms still full, looking at the room that we were going to leave MY Shelee and My Cookie in for the next three months. It was disgraceful, and that's being generous. We couldn't even set our stuff down, it was that dirty. Yes, it's an old building so we allowed for the wear and tear but condition of the room was absolutely unacceptable.

There was only one bed, one nightstand. There was hair in the shower, stuck on the doors, dirt in every corner, dirt on top of the "PEDS ONLY" trash can, filth on the broken vertical blinds, filthy windows, filthy floor, dirty bedspread, broken and FILTHY refrigerator, stickers and dirty old tape on the walls and the room smelled. WE WERE APPALLED! Shelee broke down, standing at the windows and when the nurse and aide came in I let them know that we would NOT be staying in this room. There was no way we were leaving this family in this room for the next 3 plus months. Well, they're busy people and once they actually opened their eyes and looked around, they truly turned red. They whisked us out of there in about 3 minutes and put us in another room down the hall so our room could be cleaned. We were in the other room for about 2 1/2 hours. During that time, we got to go downstairs to the cafeteria and eat and then back up to the waiting room. The doctor found us and was SOOO embarrassed. He had come in just after we left and he showed us his list of names where heads were going to roll. He could not have apologized more. We loved him the first time we met him and we loved him even more now. This was the first time COOKIE has met him. He stayed and talked and laughed with us and told us just what is expected. He has a beautiful manner and he always makes you feel like you can conquer anything. Thank GOD. More importantly, he made Cookie feel better because she has been SO nervous and scared and the room just about made us turn around.

Well, at 5:00, Tammy came and got us and we went for the room inspection. It was like a new room! Parker even said "It smells beautiful!" The head supervisor of maintenance came to Shelee and gave her a card with his numbers on it. He said to call for ANYTHING she needs and he will personally take care of it! Even Dr. Moore came in and did the white glove test. He was very happy and said we could stay. :)

Matt then took Parker back to the motorhome for a little while and us girls went to work decorating the walls with posters and stick ons and Cookie's STUFF. We transformed it into a livable, doable habitat. Matt and Parker came back at 7:00, Matt got Burger King for the kids (Cookie's last time she can have it. She will be on a "bacteria free" diet from now on.) I had a cup of coffee and we finished lining shelves and drawers and unpacking. Cookie laid on her bed and started reading her book and watching tv and Parker got on Shelee's bed. The day was coming to a close and we were all exhausted.

Time to say good night. Toughest time of the day. Parker couldn't let go of Shelee and Cookie wouldn't let go of me. They had a good cry and a well deserved one. We all did very, very well ALL DAY LONG. After a few minutes, and tons of hugs and kisses, Matt stayed with Cookie and Shelee walked with us to the car, holding Parker's hand a little longer.

Once we said Good Night, Shelee went on her way and Aunt Shannon sat in the back seat next to Parker. He worked very hard to be brave. I couldn't have been prouder of him in a million years. He fell asleep before we got on the freeway. We got home about 9:30pm. Parker was asleep and neither Shannon or I can carry him. We pulled up and Shannon came around to his door. She crouched down and we lowered him onto Shannon's back and then I had to help her stand up! We started laughing hysterically! We got him in the house though!

Today, Tuesday, they were taking Cookie for her first radiation treatment at 7:30am. It takes about one hour. She has to lay still, in the fetal position, 30 minutes on each side. Shelee can see her through a little window and can talk to her but Cookie can't move. She'll repeat it again in the afternoon. This will go on for 3 days. It was originally scheduled for 4 but they changed it to 2. Then the chemo will begin for I think 4 more days with one day rest. Transplant is on 4/27. During all of this, she is to be bathed every day and have her dressing changed on the broviac every day (instead of once a week). They said they have some special ways of making it less painful.

Shelee just called. She didn't get much sleep last night, being the first night and all. They're doing a major maintenance on the radiation equipment in their building so they're taking Cookie across the street to the other facility for radiation. She has to go in an ambulance so that's how their day is beginning. Cookie is already premedicated to relax her before the treatment, but they thought she'd be asleep. She was sitting up in bed playing her Nintendo DS. She doesn't want to miss the ambulance ride. God, I wish I could see things through her eyes!

Their nurse today is a 12 year cancer survivor. She's very, very nice. She got leukemia when she was 16 years old and ended up having a bone marrow transplant. She felt she needed to work in that field to help children get through it. All good news and it is a beautiful day in the neighborhood today.

So, that's it in a nutshell (or nuthouse, as it were). I will keep you all posted as the week's events unfold. Thank you for keeping us in your thoughts and prayers. We need your love now more than ever.

Gloria COOKIE Warren