Cookie's First Week

Dear Friends and Family,
Well, I'll try to find some humor in this update but sadly there isn't very much......Cookie finished 3 days of full body radiation, twice a day Tuesday through Thursday. The first day, the first treatment left her vomiting before she even got back up to the room. She was very ill the first day until they found just the right combination of medications to keep her comfortable. Radiation also makes you tired so mixing that with the medications left her pretty relaxed. By day three, because of one of the mediations, Decadron, which is a steroid, her appetite was a little stimulated. She told her dad that she felt like either a bagel or cinnamon roll would be good for breakfast. Of course, Matt went down the elevator to the cafeteria, found what he was looking for, back up the elevator into the room and the feeling had gone. She couldn't eat after all. By mid day, a few nibbles but mostly naps. After her last treatment at about 2:20pm, she was more awake and alert and felt like she could nibble.

Shelee and Cookie played Yahtzee, Double Solitaire, nibbled, napped, more Double Solitaire, nibbled.

Cookie has to have a bath every single day. She has the dressing on her broviac changed 3 times a week. The bath is their own private one, thank goodness. Housekeeping has to clean it every day before Cookie can have her bath. Shelee takes her "shower" after Cookie has her bath. The "shower head" is about 4 feet high, the tub is a 3 1/2 - 4 ft. wide square and there is no shower curtain (because of bacteria). There is a tile "bench" that Shelee has to sit on, mostly to get rinsed off. It's a whole new world, all right.

Shannon, Parker and I went up to hospital on Wednesday. Our first stop is the motorhome to unload some food and drinks and let Parker pull down the stairs and unlock the door. We called Matt and he was coming the motorhome to spend time with Parker. We were racing against time because Shannon and I wanted to get to the hospital to go to radiation with Cookie and Shelee. So, we get the stuff unloaded and wait for Matt. In the meantime, Parker is showing where the propane tank is and how you check to see if the motorhome is level and generally schooling me in the mechanics of Motorhome, Part 1. We're racing the clock to be with Shelee so here we are chomping at the bit for Matt to get there! I see the yellow beetle pulling into the parking lot and Parker is so excited to see his dad! We race over to kiss him and drive away, leaving Parker and Matt to fend for themselves.

We had a ton of "stuff" to deliver to Cookie's room.....again. It's hard to decide what food and supplies to take to Shelee and what to leave at the motorhome so we decided to take most of it to the hospital and let her decide what she should keep. We also had more room decorations that we had picked up. We have a granny cart that we've used over the years to get "stuff" from the parking lot to the hospital room. Well, armed with our new monthly parking pass that hangs in the window of the car, we went through the parking kiosk and pulled up to the parking "arm" but could not figure out how to make the arm go UP! Our parking pass isn't the kind of pass that you can swipe. We sat there discussing the possibilities while several cars pulled up behind us, clamouring to get a turn at the parking arm. We had to put the car in reverse, with the hopes that the folks behind us would get the hint that we were idiots in a jam. They did, thankfully, and we backed out and pulled through the parking kiosk once again to ask for direction. The guard gave us our "parking key" that's good for 5 days, the kind you can swipe! Eureka! We're off to the parking arm again. We swipe and we're in! Now, where should we park?

As we're deciding on the most advantageous parking spot for us, Shelee calls to see where we are. We have about 7 minutes before they come to pick Cookie up. Me being the MoM thought I could hear disappointment in Shelee's voice because she was going alone with Cookie so I tell Shannon to hightail it up there and I'll get the cart loaded and meet them in the room. Shannon takes off blindly, guessing how to get into the hospital and how to get to Room 324! It's that complicated! It will get easier but we're not there yet.

So, I load the 4 bags of food, supplies, laundry, comforter and 3 poster boards with pictures on them, lock the car and truck it down to the elevator. I know where to get off of the elevator but when I do I'm faced with stairs and cannot figure how to get to Point B with the cart and pictures and my purse and keys and, well, you get the picture. The phone rings, it's Shelee. I tell her Shannon is on her way. Shannon arrives and Shelee tells her that she's fine for her to find me and help me. Shannon, being Shannon, follows directions and calls me on the cell phone. She wants to know where I am. How do I know where I am? If I knew where I was, I would be on my way to the room! I tell her I'll get there eventually and I have everything under control. I get back into the elevator, take it back down to the level I started on and get out. I walk up the ramp, pulling the darn cart and readjusting the pictures under my arm. I walk, walk, walk, following the little pictures on wall of people walking and find an entrance. I take the elevator up the P2 which stands for the Level 1 of the hospital. I probably should have known that but I'm new.
As I get off of the elevator and begin entering the front of the hospital, I see Shannon and she comes to my aide. We make it up to the 3rd floor and into the room. Shelee flies by and grabs us so we can go down to radiation. Cookie is already in the room.

We can see her on two monitors. She's laying on her side, covered to her shoulders and we can see her peach fuzz and her beautiful, serene face as she sleeps. She saves her "sleeps" for radiation. They're blasting one of her Hilary Duff cds as she rests. The technician, Jesus, is a sweet bear of a man and he's very kind and gentle with our girl. After her 30 minutes is up, he goes into the room with Shelee and they turn Cookie over for the next 30 minutes. Cookies doesn't know that Aunt Shannon and I are there yet. Once her treatment is over, we were allowed to all go into the room to get her. She smiles at the sight of us (who wouldn't?) and I want to smother her right then and there. So, I use self control and only slightly smother her. She's all pink and warm and knowing that it's not from a quick nap in the sun just breaks my heart. She gets into the wheelchair and I arm wrestle the attendent to see who gets to push her. He wins.

Once back in her room, we get her cozy and she's sitting up and smiling and talking to us a little bit. We begin unloading our cart, sorting out the keepers from what goes to the motorhome. Then it's time to DECORATE! I found a 50 foot banner with SEA TURTLES on it! It's made out of thin plastic tablecloth material! Aunt Shannon and Mommy get on the chair and put it up across the top of the long window! It looks like they're swimming around with the light shining through it! Awesome! We put up a couple of palm tree decals and the picture boards and the room is looking good. Cookie says she's really comfortable! Aunt Shannon bought Cookie a new coverlet, all white and pink and green with beautiful little palm tress embroidered in some of the squares. Cookie loved it.

Since she's feeling pretty good, she nibbles a few Pringles, a few Healthy Choice cookies and some water. She kicks my butt in a game of Yahtzee so we only played one game. Humph. Then she settles down for a little nap.

Daddy decides to return Parker to us. They allowed all of us to be in the room but that's the last time. We took some really cute pictures that I haven't downloaded yet but I'll try to send one next time. Time to say good bye. It's one of the most heartbreaking aspects of this entire ordeal. As the "grown ups" we do everything we're supposed to do to be strong and undertanding and wise. Fergetaboutit. Find me a better way to get through this and you'll be a millionaire. How do you show Parker how to wrap his brain around leaving his mommy behind?

Once we're buckled in the car and Shelee takes her leave, it's my turn to sit in the back seat with Parker and hold him and soothe him while we drive. He cries for a little while, says he doesn't want to talk but he does want to hold on to my arm. You can see him working it out mentally and his little chin is quivering. It's so heartwrenching and I'm doing everything humanly possible NOT to just bury my head in HIS lap and cry like a baby! Once again, God help us all.

Yesterday, Thursday, was pretty uneventful if you can call having two radiation treatments uneventful. We're all done now and we're on to the next step of "conditioning". Chemotherapy begins today, Friday. Aunt Shannon, Parker and I are packing up to go spend the night in the motorhome tonight. We'll pick Parker up from pre school and we're on our way.

Cookie will be getting 2 days of a very strong drug affectionately called ARA-C. It will make her nauseated and cause fevers. It also dries the eyes out. Then she will get 2 more days of another drug called Citoxin. It will cause extreme diarrhea. Please understand that they will be, and have been, giving her various meds that will help lessen the effects as much as possible. We've had both of these drugs several times before but not in these high doses. Cookie will then have one day off and the transplant will take place on Wednesday, 4/26.

I'm sure that after this weekend I'll have tons more to write about. I hope it helps you half as much as it helps me. This whole family wishes the best to all of you and your families. Until next time......Love, Cookie