This might just be a record of the earliest posting I’ve made yet. The girls are at the Contemporary Resort for the R.O.C.K. weekend sponsored by the American Cancer Society. So far tonight we’ve had a nice dinner, decorated shirts, had a “jam” session where Payton hopped right up on stage to join in (in front of everyone!). We are now in our room (which is so awesome!) ready to watching the light parade on the lake and waiting for the fireworks at Disney from our balcony.

Parker’s platelets were 8 today. They started to give him platelets, but only got half way before his blood pressure started to go up pretty high. The doctor said to stop and we’d recheck tomorrow. His blood was also low so he got any transfusion of that as well.

Parker was very cranky today. He did have about 20 minutes of play time out at the table. He even painted Nemo on the glass windows with his friend Marli. He did so well – he even stood up for about 3 minutes of it!

That’s all for now! Have a wonderful night and keep Parker in your prayers. Pray the chemo is still working to kill the cancer cells. Pray that his hemoglobin and platelets will stay elevated. Also, be in prayer for the 103 families that are attending this event. Some with their children, some without. Pray that the kids have a wonderful time (one was puking walking in the door).

Parker had a decent day. Stayed in bed most of it until after nap time. Then he was up and playing out at the table (still having fevers). Again, destruction brought lots of laughter. He was playing Lucky Ducks (or quack quack) with Payton and Jaiden – which then turned to throwing the ducks on floor. I didn’t care though. Funny thing. He has started this thing where he’ll hit me on the chest and start laughing – which in turns makes me laugh. Then tonight we were watching Jungle Book and the boy was hitting the tiger. Parker said “hit, hit”. I said yes and that’s not nice. Then he said “Jun Book hit”. I explained that they hit on Jungle Book but we don’t hit – I wonder if that’s where he got it from.

Still not eating and not to much to drink today. Still not walking or standing for long periods of time – I don’t remember when that happened last. He did pull to a standing position in the crib again tonight for me to get him out. It is encouraging to see him sitting up by himself to play though. He really like playing with the bug puzzle Little Grandma gave him.

His platelets are down to 22 (they were 44 yesterday BEFORE transfusion) and hemoglobin was 7.5 (about the same as yesterday BEFORE transfusion). Where is this stuff going?? His stool culture came back negative for blood and CDIF – PRAISE GOD!!! We are off isolation. Dr. Wall decided not to do any transfusions today and to wait and see what tomorrow brings.

I made a trip to the ORMC financial services office today. Not very encouraging. I went in with the hopes that it would be an easy process and they would stamp the approved stamp on it and I’d be done. Since we bring in less then what our bills are the lady said she doesn’t think it looks good for us to get approved. What?! Wouldn’t that make it more of a reason to approve us. Obviously it’s less – I can’t work because I’ve been with Parker for the past 6 1/2 months. We are trying to get assistance for our portion of Parker’s bills, as well as, mine and Paige’s. Oh well. I know that God will take care of us and at least I made the attempt.

We had to move rooms tonight (around 10pm). I was washing out all of Parker’s cups (aren’t you proud of me mom ) and I noticed mold/mildew on the air vent. I told nurse Becca and she called it in. Within 5 minutes 6 service people were in our room (environmental to engineering). I was so impressed. And within 15 minutes we were packed up and moved to another room. Of course our side is full so we are on the other side of the doors (not by our nurses). Becca said she was willing to go to the other nurses’ station so she could here when Parker’s pump beeps. A kind lady from environmental stopped by our room and let us know that engineering was working on the air conditioner and that her crew would give our room a deep cleaning (incl floors and walls). It was like pushing the “easy” button. I was amazed at how quickly (and nicely) we were taken care of. Thank you to everyone who was a part of this.

Tomorrow I’m going to a weekend conference put on by the American Cancer Society. There will be 100 families in attendance. Aaron is staying with Parker and my mom, Paige, Payton and I are going. We’ll be staying at the Contemporary Resort through Sunday with all meals, lodging and a day at Disney (Sun) covered by the ACS. While I attend conferences and seminars (one is on bone marrow transplants and one is on navigating community resources), Payton will be hanging out and doing activites with other kids her age, experiencing some of the same things. I think I’m more excited for her then for me. I can’t wait to get back and share with others what I’ve learned. It is so sad that some don’t realize what is out there for them (like the social security thing), including me. I’ll bring my computer, but not sure if they have wireless. So, if there is no update don’t worry, I’ll catch you up on Sunday.

Continue to pray for answers. Continue to pray for healing – not only for Parker, but for all of his friends. Pray that I can stop thinking “where would I be if we weren’t here” or “what would life be without Parker”. Jeremiah 29:11 says “For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” I do pray for Parker’s future and for our hope. Pray for me being away from Parker. Pray that I enjoy the time with the girls and that Parker is safe and well. Pray for daddy and Grandma and Grandpa Baxter as they care for and love on Parker.

HAPPY BIRTHDAY, PAYTON!!! She was so excited that her day of her “real birthday” is finally here and that she is really 5.

My day started at 6am feeding Paige and then heading over to the hospital to be with Parker. Aaron had to go to a meeting in Ocala and returned home around 10:30pm. What a long day.

The ENT surgeon came in and explained the procedure he would be doing (which I remember from when Parker had it done in early March). But, he added that there was a lot of fluid around his ears and the possibility of putting tubes in his ears. I didn’t like the sound of that, especially since Aaron was not with me. Considering Parker had never had an ear infection I wasn’t very keen on the idea. Your prayers worked because he didn’t start asking for juice until we were in Pre-Op.

Parker had to have blood and platelet transfusions again today (both were direct donated but I only received the donor numbers – I’m working on getting the names). His counts before transfusions were: platelets 44 and hemoglobin 7.2. The “carriage” (crib transport) arrived to take him to pre-op around 11:45am for his 1:00pm scheduled surgery. His blood hadn’t arrived yet so we were delayed.

While we waited, Base Camp brought in Sonny’s BBQ for Payton’s birthday lunch (and a yummy cake). Child Life gave Payton a Lite Brite set – yippie! After lunch, Payton and Parker sat at the little table outside of the playroom (Parker isn’t allowed in because of his fevers) and played the game. I was so proud of Payton for sharing with him. Parker’s favorite part was scooping out all the pegs and throwing them on the floor. I didn’t care about the mess. It was just so wonderful seeing them play together and hearing both of their gut-busting laughter.

We had the shortest wait in pre-op, which was a wonderful change. I was by myself with Paige and Brittany had Payton upstairs playing. Parker waved bye as they rolled him into the operating room. Paige and I hung out (she ate while I watched Law and Order reruns) in the waiting room. The surgery took about 1 hour and 15 minutes. While we were waiting, Casey, a nurse from PICU and seen that Parker was in surgery. She came out to check on me and see how things were going. This is one of the many reasons why I love this hospital. She could have just keep going, yet she took time out to see us. I could see the compassion in her eyes as we talked. Thanks Casey for going above and beyond for me on a day when I really needed it.

The surgeon said Parker did really well. They decided against tubes at this point and will just monitor his hearing later on. Parker will have to take affrin 2 times a day and a sea salt nasal spray 3 times a day. When the doctor looked in Parker’s mouth (which was wide open because he was screaming from the doctor waking him up to look in his ears this morning) he noticed a sore on his roof. This is probably a side effect from the chemo and he’ll get a mouthwash for that.

When we were walking back upstairs Parker asked where Paige was? So concerned. It’s funny because when he was sleeping early this morning he said her name in his sleep too. He just loves his sisters.

About 5 hours after surgery, Parker was sitting up in his bed dancing to the music of Jungle Book (a new favorite). He was laughing, playing, shooting the tips off the thermometer. Great fun! At one point when I started to put the rail up on the crib he actually stood up to try and climb out to me!! I guess the sinuses really affected him. Praise God that he is feeling better!

The only real bummer of the day is that we were put on isolation at 7pm. He has a stool sample that was sent to the lab to test for CDIF (and blood). We have to be on isolation until the results come back which will be sometime in the morning (hopefully). I’m hoping that it looked the way it did just because he hasn’t had any food in days – not because of CDIF. Please pray that that is the case.

Still have my cold. I’m glad at least Parker enjoys me wearing a mask (it has Mickey, Donald, Pluto, etc on it). Please pray that it heals quickly. Continue praying for the tumors to decrease, to disappear. Pray for Parker’s counts to come up quickly – quicker than the doctors are expecting. Pray for no CDIF and no more fevers. Pray that he will eat and can get off the nutrition. Pray that the sinusitis is the only infection we are going to have to deal with.

**The link is up for information on the Benefit Poker Run on the fundraising page.