Preston's fight against Acute Myeloid Leukemia

Wow, what a few weeks. Since the last update it feels like we have been going non-stop. We had to pack up everything in the hospital and take it home. Basically we packed it up and threw it into our pool room. I emptied all the suitcases onto the couches in there. Then I had to pack all the bags up with stuff we wanted and needed to take to Orlando. We still had a few things in the hospital room. I was up until almost 4am getting everything ready and then in the morning I got up and went to find a luggage cart because we had to take 3 big boxes on the plane with us filled with medicines and supplies. I then went to the hospital to pick up James and Preston. Preston was discharged and walked out of the bone marrow transplant until around 10:45. It was bittersweet. The floor there would normally throw confetti when a patient leaves after their transplant. They asked what I thought and I said that they could do it. I know that he didn’t get to get his transplant again and this is not the way I hoped he would have left the unit but I felt that he deserved it. When he walked out into the hall and saw a bunch of nurses standing there and saw paper falling from their hands he stopped and turned to us to say “what are they doing, they are making a big mess”? He really did not enjoy walking through it that much. Between being shy and them throwing confetti all over him, he was just ready to get out of there. What was funny was that he had to stop right before we were going through the exit to clean himself off and clean his suitcase off before he could give hugs or leave. He was so excited to get home and leave for our trip. We got home around 11:10. We ran in, got the bags ready, did a few last minute things and the limo was there to pick us up at 11:25 to take us to the airport. I still can’t believe that I got everything done and we got out of there and into the car to go to the airport on time. We had to take all the boxes with us on the plane as carry-on along with one small suitcase and our necessary stuff. We also had 3 other suitcases. I really think the most stressful thing was getting onto the plane. We had 3 children, a double stroller, 3 boxes, suitcase, and a bag of things we needed to get to the plane and take on with us. Thankfully nana was there to help us get on and thankfully I got that luggage cart. Preston was not able to go through airport security machines and had to be patted down along with his medicines so it took extra time to have him and James be checked and each box had to be opened and looked thru. The boxes could not be titled on its side so the pilot nicely put them up front with him. Southwest was great. Actually both airports were great. Preston could not stand in line to wait to go through security and they let him go right through. The doctor’s also ask that he board the plane first and sit in front row, they had no issues with it at all, never even asked to see the doctor letters. Leaving Raleigh the pilot even let Preston sit up front with him while people boarded and hang out. It was great. When we got to Orlando, a nice lady from Give Kids the World was there waiting for us with a luggage cart and helped us get to the rental car. It was great. The village was great. Each family has their own villa. The villa had a train and a carousel that the kids loved. It was a great place and it was crazy that it was almost all ran by volunteers.

The first full day we spent down there, we had to go to Arnold Palmer Children’s Hospital for platelets. A friend from UF stopped by who works around there. Preston got his platelets and with about 20 minutes left, while sleeping on James, he started snoring. Then he started coughing and just as the platelets were finishing, he started sounding like he was choking. He couldn’t open his eyes and he couldn’t stick out his tongue. His lips were swelling and he broke out in hives. The nurse called the doctor and they gave him his more Benadryl and some hydra cortisone. Preston was a mess, his coughing stopped within about 5 minutes of the meds but his hands started swelling. His hands were bigger than mine. It was a very scary day. We stayed at the hospital for almost 4 more hours to make sure he was ok. He never woke up before we left but the hives were gone, swelling started to go down, and we were told just to give him Benadryl every 6 hours. That poor child. We had hoped to go to a park that day after but we ended up just staying around the village because he kept having flare ups. The next day we had scheduled to use as a rest day and said a few friends could come and visit. It was nice to see them. Sunday, Monday, and Tuesday we went to Disney. Preston had a blast all 3 days. About 1/3rd of Magic Kingdom is closed right now and the rides he really wanted to go on were closed (goofy’s roller coaster and Big thunder Mountain railroad) but we still had so much fun. At Epcot, he went on test track 2 times and loved it and went on Soaring 2 times. Those were his favorite rides along with the train ride around the park and the monorail. The third day at Disney we just went from Magic Kingdom and Epcot and did all his favorite rides of both places. We planned on going to Hollywood studios until James said he didn’t really want to go. I wanted to take Stephanie to Mickey Mouse Clubhouse but James did not want too. He said it is a bunch of kids, jammed into a room, sitting on the floor which probably has feces on it and not the best place for Preston which he was right. We did see Mickey and Minnie at MK and it was great. We got some awesome pictures and Stephanie was so cute. She ran up to Minnie and gave her a hug and wouldn’t let go for a long time.

The trip was fantastic and we are thankful to Make a Wish and Preston’ doctors for getting it all organized. Give Kids the World was an amazing place to stay for the week. Each wish child that goes there is given a star and hung up in this castle. It is incredible. I think they said there are over 120,000 stars now. Preston’s star was hung in the new star tower they added. We can go back to visit any time. What amazes me about that place too is that it is run by volunteers and it runs so smoothly. There were volunteers from all over the country.

When we got back we had a very busy weekend. A mom in Abby’s class organized a train ride at the New Hope Train Station for Preston. This is where we took a train ride when we found out Preston relapsed. He went on the steam engine then. The train station is closed until the end of April but (another place all ran by volunteers) when they heard about Preston they worked hard getting the train put back together and took Preston, us, some nurses, friends, and co-workers of James on a train ride. Preston got to drive the train and he was so happy. It was great. They had a news crew there who did a piece on it. After the train ride they even let Preston operate a crane they had there. If you could have seen his face, it was great. He spent a lot of time looking out the window watching a crane work while he was inpatient and now he got to operate one. The next day, a friend of ours organized snow to be made in our front yard. She got this company to come out and I have no idea how many bags of ice it took but it was awesome. They set it up with 2 tracks to ride sleds in and then a mound of snow to play in. We had old snowsuits of Abby’s that Preston and Stephanie got to wear. We went out around 10:45 in the morning and at 3:30 we told Preston he needed to come in to eat and we had to take our friends back to the airport who came in from Houston. That snow day was truly the best. We all had so much fun; Abby kept screaming she didn’t want the day to end. Preston had fun doing snow angels, digging, throwing snow at people, and sledding. His favorite thing was to do a 3 way. James laid on the sled, with Abby on top, then him and they flew down the track. Thankfully our front yard has an incline. It was a super fun day. That day two different news crews came. Below are three videos.

http://triangle.news14.com/content/top_stories/654306/family-creates-snowy-scene-to-make-memories-with-young-leukemia-patient

http://abclocal.go.com/wtvd/video?id=8558898&syndicate=syndicate§ion

http://www.wral.com/news/local/noteworthy/story/10780427/

This past Wednesday and Thursday, two founders of Alana’s Angels from Houston came to visit Preston and to take pictures. It was so nice of them to travel this far and to visit. We love the pictures that they took and it was such a wonderful gesture. This organization visited Preston a few times while he was in Houston receiving treatment so for them to offer to come out here to Durham and visit, was just a wonderfully kind thing to do. The kids loved their visit too. We went to Duke Gardens while they were here and Preston led the group. Full of energy and not wanting to rest, he walked for nearly 2 hours before we had to leave to go to the hospital to get platelets.

Over the weekend we had James friend from Long Island come along with his brother and our sister-in-law. It was a lot of fun. Full of chaos. Tim played with Preston the whole entire time he was here. It was so great for Preston and what a great time he had. 2 days of non-stop role playing fun. Ken and James, along with my mother and Abby, worked on framing in the playground and putting mulch down. It has been raining here a lot and I have hated playing out there in the mud. The kids love the playground so we decided that we needed to do something about it. Thank you to our realtor too who helped James go get a lot of the supplies that we needed. They did a great job getting it done and it looks so nice. It will be much nicer to play out there now. I despise mud almost as much as the cold.

Preston loves being home just as much as the girls love us bring home all the time too. I think it is really hard on them now with all the visitors. They have associated everyone coming to visit with that James and I won’t be home. When I am home, they really want nothing to do with anyone else. It has been an adjustment since we got home. James and I are responsible for so much more than flushes like we were in Houston. Now we have to do cap changes, blood draws, and bandages changes along with his medicine he takes 5 times a day. He has 3 lines so it has been time consuming and to find a great time with the other 2 girls around, we have had to do some of these things after midnight. The girls have been so great though, they know they have to wear a mask and they do with no complaints during cap changes. Abby has been very helpful. I think Preston is down to about 25 pills now, we have been able to reduce the cyclosporine because his levels have been high (which caused high blood pressure for a while).

The night of our last update I got a phone call from a number I didn’t know. I was talking with Preston’s nurse and declined it. They called right back again and I declined again. They called back again and I answered the phone “hello”. The person on the other end said “hi celeste, this is Tim Tebow”. I was totally caught off guard and said “no way”. He talked to Preston for about 20 minutes with my help translating some times. He was so patient and cool. James and I were saying that talking to your own kids on the phone is annoying sometimes because they hold the phone away from them, put it down and walk away, and mumble. He never sounded like he got annoyed and kept Preston talking the whole time. Preston was so cute because whenever he would address Tim he would call him by his whole name (do you want to hear a joke Tim Tebow). Poor James was working late that night doing testing. When we finally got to talk to him and told him that we talked with Tebow he was annoyed he had to work late but very happy for Preston. Tebow said he would like for Preston to come to a football game and when I said that I didn’t think that would be possible he said that maybe he could attend an event he was doing in Tampa in March. I told him that we would have to check with his doctor and see how Preston was doing. When we got back from his Make A Wish trip, Dr. Martin said of course he would be able to go. I emailed a contact we were given telling them that Preston could go if the invitation was still available. Today Preston was officially invited to go to Tampa and meet Tim Tebow in person. We are so excited for Preston and he is so excited. He ran around our house several times yelling that he gets to meet Tim Tebow. Please pray that he stays feeling well so that he will be able to go. The event is this Saturday. We decided that we would rather drive this time than fly. It was so stressful to fly. We are going to leave on Thursday night and drive a few hours when James gets out of work and then stop. It is a little over 10 hours. On Friday we will drive the rest of the way and we hope to be able to go visit the beach and to go to dinner at where James and I got married with the kids depending on what time we get there. Thursday, March 8th, is James and I 9th wedding anniversary and we were married at the Rusty Pelican in Tampa. It is great that is works out that we will be back in Tampa to celebrate and I am so happy that we can do this as a family. Saturday is the event so we will go and watch and then after they have set up for the personal meet up with Tebow. Preston has set out of Gator Connect Four game to take with us and play. Sunday, we will have to drive back to Durham because James has an exam in the morning on Monday. It will be a long weekend, mostly spent in the car, but it will be a lot of fun and we are looking forward to it.

To start wrapping things up, Preston has been feeling really well. It is incredible to see how he is feeling and playing. He is so full of energy and today at his doctor’s visit; I asked the doctor when he was going to pinch me to wake me up from this nightmare. It is hard because you go a week with him acting like a normal boy and then you go to the doctor’s and it is like a slap in the face. People visit, call, and think that because his prognosis is terrible that he should be on his death bed and acting like he is dying. I dread that day. James and I say everyday how blessed we are to have this time with him, to have quality time outside the hospital knowing that he doesn’t have much time left, to do all the things that we have been able too. We are so blessed and I thank God for that every day. I have seen that some people have shared his information and that Preston has months to live. We have no idea, the doctors have no idea, and I hope it is more than anyone thinks. Next week, Preston is going to have another donor lymphocyte infusion and hopefully that will buy him more time.

Here are a few funny things that have happened over the past few weeks:

-On way back from Magic Kingdom, the monorail had stopped running to go to Epcot and we had to take a bus back to our car. We actually had to do this twice. The first time, James and his dad were joking saying the driver was a shitty driver because he dropped us off as far as possible in the deserted parking lot and we had to walk really far to our cars. Preston said that he was a good driver and they shouldn’t pick on him. Two days later when we took the bus again it happened to be the same driver. As we got off the bus, James said “my son says you are a good driver”. The driver said thanks as he dropped us off in the same spot. As we walked away Preston says “aren’t you glad I didn’t tell him you said he was a shitty driver”.

-Over the weekend James friend flew in from Long Island. James and Preston left to go get him and were asked to wait for his brother Ken to get to our house to go with him. Ken said that he was two minutes away. They waited which actually were about 15 minutes so when Ken showed up, James told Preston to say “two minutes my ass”. Abby told him he couldn’t say ass so now he has been walking around saying however many minutes my donkey.

-Tim (the friend from LI) liked to try and have his friends growing up call him Big T or Big Diesel. Preston took to Tim immediately and had so much fun playing and Tim was so happy that he got Preston to call him Big T all weekend. What was funny about it is that he would correct us when we said Tim to try and get us to call him Big T too.

-While in Orlando Preston kept saying that he never got to try coffee. His mom made fresh decaf and we let him have a sip which he didn’t care for. That night on the way home from Disney we told Preston he had to take his meds when we got back and James told him he could try a sip of beer if he took his meds. He took them fast. James said he would not like it because kids don’t like the taste of beer. Preston took a sip and with a smile looked up at James and said “I like it, I really like it”. James told him he could have one more sip but that was it. A few days later we were in the limo on the way home and Preston says to James “I can’t wait to get home and have a beer with you Daddy”. No we didn’t let him have one or even another sip but it was so cute.

We have decided to do another order for t-shirts. If you are interested in getting a Preston’s League t-shirt, please email you size information to prestonstshirts@yahoo.com Shirts are $15 (we are just doing in the white) and if you need to have them shipped to you (they will be made here in Durham), I can fit about 5 shirts in an envelope so please include $5 for shipping. If it a larger order than the five shirts, please wait on shipping cost until we get in shirts and we will let you know what it is. Also, please include address of where you want it shipped in email. My sister in law is in charge of organizing the order so please email her at the email above for any questions. You can also PayPal your money to prestonstshirts@yahoo.com

I also want to thank so many people for the outpouring of support. I mentioned that Preston’s story was on the news and we received a number of emails and cards from people, even with donations. It was so incredibly generous. I also can’t thank the people at Immaculata enough for everything that they have been doing. We could not have picked a better school for our daughter to attend. Thank you to Kerry, Kelly, Emily, and Samantha for organizing a fundraiser for Preston in a few weeks. It sounds like it is going to be so nice. They are also doing a raffle and you do not need to be present to win. If you are interested in purchasing raffle tickets, they are $2 apiece. Some things are just for this area but some of the things you could win are a signed basketball from Coach K, an autographed poster from the whole Duke Basketball team, a very pretty vase, Vera Bradley purse, Target gift certificate, etc… If you are interested in purchasing raffle tickets, please contact kellysmedley@gmail.com I would also like to thank our neighborhood for all of their support. A neighbor down the street when she heard contacted the rest of our community and is working with Kerry to help organize meals and lawn care for us. Another neighbor is also organizing a fundraiser at a restaurant that they own. People are just so overwhelmingly kind and generous. My family cannot thank you enough. It is so nice to just enjoy each other and not have to worry about the little things in life. Thank you all!!!

I will post more next week and try and get pictures uploaded to the computer too.