Preston's fight against Acute Myeloid Leukemia

I can’t believe it is already May. I have been putting off doing any updates because every time I think about doing one, it reminds me of how much time has passed since we lost Preston. And now it is May. It will be 1 year on May 19th. I wish it I could say it seems like yesterday but it doesn’t. I think this is one of those times that it seems like it has been forever since we were able to hold him, hear him laugh and see his smile, or since I last heard him tell us that he loves us.

James has told me something that I think about every day, several times a day actually. We don’t miss him anymore today than we did yesterday. He is right. I don’t. It is hard though and you think you miss him more because a month like May is filled with reminders that he is not here for things like Mother’s day and the Bone Marrow departments Rainbow’s for Hero’s walk we just attended last weekend. Soon it will be his anniversary and Emily’s baptism. We just need to keep reminding ourselves that we miss him just as much today as we did yesterday.

In the last update I mentioned that we were expecting another baby. Emily Belle Winslow joined our family on March 8, 2013. She arrived at 6:37pm and was 6 pounds, 4 ounces. 20 inches long. She was a month early and besides being jaundiced and having a hernia, she is a perfectly healthy baby. Emily arrived on our 10 year wedding anniversary. Before we got married James and I talked about renewing our vows (because he wanted another bachelor party) and for the past few years we talked about how we wanted the kids to be part of this renewal. After Preston passed away, the idea of our vow renewal was not as appealing. It just didn’t seem right. When Emily was born on our anniversary, we took it as a sign as a gift from Preston and that he was right here celebrating with us.

Besides missing Preston so much, the hardest part of the past year has been the pregnancy and having the new baby for me. Not because I am sleep deprived or because I don’t have the best pregnancies but because of the comments like:

You have 3 Girls.

How many kids do you have?

You going to try again for a boy?

You don’t want to explain private family situations to strangers because I knew that they never intended to hurt anyone by the questions but I can’t tell you how many times this has made me cry or bothered James. We were given a boy, the most perfect boy and he was taken away from us way to early. I am so glad that we had another girl because it would not have been fair to a boy. He would have had a lot to live up too. Even going to the doctors for baby check up’s was hard. Not having the same doctors every visit, they knew about Preston. I walked into almost every appointment with them asking about how I was handling things instead of how was I feeling or talking about the baby. I felt abnormal if I didn’t cry and abnormal if I did. You also think about all the things that you know that he would have enjoyed and we wish he could have done. It makes it hard to sit back and fully enjoy things. I think there will always be a guilt (even though I know Preston would want us to be happy) that we are having fun and he is not with us to be doing these things. But to be honest, I think I have handled the last year pretty well considering. We are still devastated at the loss of our son but we deal with at home privately. It could be so easy to get depressed and just breakdown but we need to try to be the best parents we can for our other children, Preston’s sisters.

The girls are doing well. Abby has been doing great in school. She started playing lacrosse and loves it. She is busy with play dates, sleep overs, and being a normal 7 year old. It is great to see because she didn’t have normalcy for so long. I try and think about how hard this has been on her and I am so proud of how she has been dealing with it. She misses Preston so much and from time to time she feels a sense of guilt that she didn’t play with him enough. I love the stories that she remembers about him.

Stephanie is doing great too. She is such a funny and smart girl. She will start preschool in the fall and I think this past year has been a huge transition for her. Her first 2 years were spent in the hospital, watching us care for her brother. This past year, she has really been able to experience things that she could not before. Stephanie is an incredibly caring, independent, patient, and loving girl. I wonder how different her personality would have been if our luck was different. She misses Preston a lot too. You wouldn’t think it would have such an impact on a 2 year old but it does. She talks about him often and plays with his toys all the time. A few weeks before I had Emily, I had to be admitted to the hospital. I had to go to the same floor Preston was on and it broke our hearts to hear her ask if I was going to go to Heaven too.

Emily is 2 months old now and we see so much of Preston in her. Bittersweet, yes. But we welcome that she looks like him, that she makes the same lips that he made, and her calmness and way she crosses her legs when she sleeps. Even in a picture from one of her ultrasounds, you could clearly see those lips. She is such a joy to have as part of our family. We often think about how hard it is on us that she never got to meet her amazingly strong and courageous brother and how hard it will be on her to hear about him all the time someday without being able to have the connection her sisters had. We will do our best to make sure he is just as much as part of her life as he is in Abigail and Stephanie’s. We are so thankful that he was able to name her. Emily Belle, his 2 favorite girl Thomas the Train’s. We used his artwork in her room and we will tell her stories and watch videos often.

Looking back on my last post, I failed to give an update about the Hess trucks and art supplies that we gave to the kids on the floor for Christmas. It was a huge success. We are so thankful for everyone who contributed and helped us make it happen. We are planning on doing this every year. We know Preston would have wanted to do this if he was here. He was such an unselfish boy even at his age, wanting to give his toys to kids that needed them. He was the first one to clean out his toy box if we asked him too. We can’t thank everyone enough who made this happen. I was also touched when the girl’s doctor said that he bought a Hess truck for his daughter in memory of Preston. We love that idea as well. Stephanie often plays with his trucks and it brings smiles to our faces remembering how much Preston loved playing all the time. I think part of the reason I forgot to post about it was that we decided that we couldn’t be home for Christmas last year. It would have been too hard. We ended up going to Disney for the week and to Discovery Cove on Christmas day. We had a very nice time and it was a great distraction. We kept ourselves very busy and we are so glad that we did this.

Some have asked what we are going to do for his anniversary on the 19th (It is really hard to call it an anniversary) We don’t really feel like it is a day to celebrate, it was the worst day of our lives. What we would love the most, for those who want to remember Preston that day is for you to play with and love your children as you should every day. We are going to spend the day at home with our girls. We will wear our shirts, release some balloons, watch videos and make some of his favorite foods but we will wait to celebrate his life on his birthday in September.

James and I have started to write down funny stories or things he used to say. If you have any you would like to share, please email them to me. We would love to have them. We have been going through videos as well (or James has). It is still really hard for me to watch. You want to watch and talk about him all the time because eventually it will be harder to remember but at the same time you don’t want to watch or talk about all these things because it breaks your heart and I end up hysterical every time.

We are thankful for the friends and family that have provided us support over the past few years. We are so lucky to have so many wonderful people keeping us in their thoughts and prayers.

Please also pray for James.  He will be taking part 3 of the board exams in June.  This is the test he was scheduled to take a few days after Preston passed away last year.  Since it is only offered once a year, it is that time again.  

I will update again soon. I will post a few pictures too in the picture section as well.

November 19th was 6 months since our sweet, funny, incredibly smart, loving, and adorable little boy passed away. I have not really felt like updating, it is hard enough each day thinking that this is still not a nightmare. We are still devastated and I think we will always be. People say “time will heal all wounds” but James is right, all time has done is made us realize we will always be sad and we should be. We had to lose our child, our son. We watched him fight so hard and go through so much and besides loving him, there was nothing we could do to save him. As a parent, your job is to protect your children, to keep them safe, and although James and I know that we did everything we possibly could, you can’t help but feel that you failed somehow. There has not been one day that we have not cried. We miss him so much. It is so strange. You want to hold on to every memory, you are so afraid you will forget. Yet you want to block it to lessen the pain you feel. Every night I fall asleep re-living some part of the day that Preston passed. It was the worst day of my entire life yet I try and remember every word, every hug, every last second I had with my son. James and I watch our girls play sports, watch movies, just play with toys and you can’t help but think about him and know that he would have loved those things too. I think things like this are the hardest parts of the day for me. I listen to the girls and I am so happy that they talk about their brother all the time, they remember stories and his jokes but then I also feel sad that they say some of the same things that he would say. You picture him in your head saying these things or doing these things and it breaks your heart that all we have left are memories. James and I are doing the best we can though, we all are. I can’t help but think what great actors we have become. Life has had to go on. I feel like we have to put on happy faces and pretend that everything is normal or ok. It is easier to do this than to talk to people about how we really feel because no one understands. We hate when people ask how we are handling things, it makes us feel uncomfortable. What are we supposed to say?

Last year we spent Thanksgiving at home, with everyone happy, hopeful, and so thankful. Preston was doing great after transplant and feeling well, at least that is what we thought. On Nov. 30th last year, we were told our son relapsed and his cancer was back for the 3rd time. This Thanksgiving I have really had a hard time being thankful. I know I have so much to be thankful for, I know that. Yet I am angry and still don’t understand how Preston was chosen to be taken from us so early. How someone who loved life so much, fought so hard, who spent almost half his life in the hospital, and never gave up or complained about the crappy things dealt to him could be made to suffer so much. I am not thankful for that. I am not thankful he was chosen and taken away from me, from our family.

The girls are doing ok. Stephanie had a very hard time in the beginning. She misses Preston a lot, more than I thought she would for only being 2. You are not sure what someone at their age thinks but she understands. She plays with his toys all the time and for some reason she found his shoes in his room and insists on wearing them although they are much too big. She loves wearing his shirts and when she sees a picture of him wearing it, she gets so excited that they match. I hate her seeing me cry though. She knows why I am sad and reminds me that he will never be able to come home, that he is in heaven. She means well but I hate having the reminder. Abby has her good days and bad. She misses her brother so much and it is so hard to see and hear her sometimes talking about her regrets. My heart breaks for her. She has had to deal with so much the past few years and she is incredible. I know there are many days that the only thing that gets me showered, dressed, and out of the house are because I need to go pick her up from school. Being back in school has been great for her. She has made many friends and is able to be a normal child. She is excelling in school work and makes us so proud. Christmas will be very hard for her, for all of us, but the only thing she has put on her Christmas list this year is that she wants her brother back. I would do anything to make that happen if I could. Most of our friends know, but we are expecting another baby. A girl due in April. After 3 miscarriages leading up to this pregnancy, I was not sure I could suffer another loss. I think this baby is a gift from Preston. He wanted another brother or sister. Before losing the 2nd baby, Preston picked out names. He knew I loved the name Emily (Stephie was almost Emily) and that is one of his favorite girl trains. Not only is it hard to imagine that he will never get to hold her or be in a family picture with his new sister (although right now we could not imagine a family picture ever again), it is hard for James and I to think that the only memories that Emily will ever have are ones we tell her. We are so happy that he gets to be part of his sister’s life by naming her, Emily Belle (both his favorite girl trains names) and we will make sure we incorporate him into her life in every way we can.

During the past 6 months we have experienced a lot of the firsts already. It has been overwhelming and filled with sadness. With everyone’s birthdays (except Stephanie) and some holidays, there is always a constant reminder we will not get to celebrate these days with him physically here. Preston would have turned 5 on Labor Day, September 3rd, this year. I gave birth to him on Labor Day. We spent the day trying to celebrate him with his favorite things (food, movies, games, toys). James and I decided that we would like to purchase toys that he would have loved and gave them to his nurse to give to a boy on the floor who we hoped would have loved them as much as Preston would have. His nurse picked a boy, the same age as Preston, who had been having a tough time and said it really perked him up. I know Preston would have been so happy. We ended the day with a balloon release and eating his favorite cupcakes celebrating him and what little time we had with him.

Christmas is coming up and the thought of him not being here is painful. We would like to do the same thing, by purchasing toys that Preston loved, except this time, for the whole floor and we hope to make it a tradition, honoring our son. For the boys we thought it would be appropriate to get a Hess truck. Hess releases their new truck of the year around the holidays. Playing with all of his Hess trucks was by far the highlight of everyday for Preston. These were his favorite toy and he was often on the floor begging for all of us to play with him, pushing them all around the room. For the girls, we thought it would be nice to get art canvases with painting supplies. Preston loved to paint. I know that his paintings are treasured in our home today and we are so fortunate to have so many of his wonderful drawings. We have shared this idea with a few family and friends and some have wanted to help and asked that we post this. If you are interested in helping us purchase art supplies or Hess trucks, please contact me. Although Preston himself will not be able to enjoy these toys, we know he will take great joy in watching from above all the kids on the floor getting to enjoy them and I know James and I take comfort in that we feel like we are buying him presents and celebrating Christmas with him.

I want to apologize also to everyone who sent flowers, cards, or donations for not mailing out their thank you cards.  They have been done for months.  They are sitting in a box under my dresser ready to go out.  I will never be able to mail out birthday invitations or anything else like that for Preston again.  I know it may seem silly to some, but I can't help but feel that once I mail out these thank you's, that is it.  It is not the last card I would ever have imagined mailing out to people for him and I am not ready.  Someday you may receive it but please know, James and I thank you all, from the bottom of our hearts.  

James and I want to thank everyone who has supported us throughout this difficult time. It is hard. We have lost friends and we have gained new ones. We are so thankful for our families and I am beyond thankful for my husband and wonderful girls. They keep me strong and going every day. One day at a time, sometimes one hour at a time, we will continue to be as strong as we possibly can. We miss you Preston so much. We love you, and you will always be the best!

I can't believe it has been almost a month.  It is weird, in some ways it feels like it was yesterday but it also feels like it was so long ago since the last time we were with him, holding him. 

Over the past several weeks, I honestly feel like it is getting harder. We miss him so much. The girls are still keeping us busy but even Abby is starting to speak more about how angry she is and how she misses him. I just can’t shake this feeling that he needs me. I wake up in the middle of the night and think about him all day about how I should be caring for him. I know really that it is me who needs him. I have cared for him for so long in a different way than how I have needed to care for the girls. I miss everything about him. A few days before he passed, James recorded him saying “I love you mommy, you’re the best. Bye”. I cannot tell you how many times I listen to that. I wish there was a button I could push to get him back.

We are all doing ok though. Like James says, we are managing. I hate when people ask how I am doing though. I am ok. Ok for our circumstances. I know people say time heals all wounds and that we just need time. I don’t believe that. We will never be the same. We will just learn to cope with it and that is what we are trying to do now. We are taking it a day at a time. I know people ask because they care and I know people don’t know what to say. It is a horribly awkward topic. I have been so angry, especially this past week. Preston went through so much in the past 2 ½ years. More than anyone should ever have too. He rarely complained and he did everything he had too. I can’t stop thinking about his last month. Between the biopsies up his nose, cutting of roof of his mouth, and the injection under his eye, he should have complained so much more. He was so strong and incredible. He was 4 and he should have complained. That is what kids do. Hell that is what the majority of adults do.

Another thing that really upsets me is reading several people’s complaints about their kids being out of school and they can’t wait for them to go back and get away from them. I wish more than anything I could have all my children here with me, I would love to hear them fight constantly, I would love to see them be difficult and make messes. I would gladly welcome it. Being a parent is such a privilege, be happy you have the opportunity to spend time with your children, embrace it. You never know when it could be taken away. I wish I embraced it more than I did. Enjoy your children, even if they do drive you nuts.

For me right now, my girls and memories are the main things getting me through this. We painted the frame we got from his memorial portrait and ordered a shelving unit to go under it. We put it in the family room near the new digital picture frame that James got as well to show all the pictures of Preston. We have placed some of his favorite things on the shelves (books, games, movies, toys with some pictures) and at first I thought it was weird. It is kind of a shrine but Nana called it Preston’s corner and that sounded a lot better. James is right, truth is, who cares if we have a shrine of Preston in our living room. People display pictures of themselves all over their homes and for us to have a special corner in our home, other than his room, is not “not” normal. Most people never have to go through what we have and we can think of them as being not “normal”. I actually like it. It reminds me every time I look at it how amazing he was, how I miss his smile and laugh, and it has been great for the girls. I want them to remember their brother. I don’t want them to forget what they meant to him. His favorite things shouldn’t be tucked away in his room where we would rarely see them. I look at his trucks and remember him playing on the floor. I am thankful for those memories.

Abby has been expressing her feelings more. I hate that she hurts. This morning she woke up and went to Nana telling her how she is mad at God and he should have picked some other kid. James and I talked to her about it and she has every right to be angry. I am angry. We have read her a few books about death but in general we have been trying to avoid these kinds of things and we talk about our feelings a lot. A few people have sent books and Abby wanted to read one. This one particular book (which I have not and will not read the one for adults) talked about this child who got sick, went to heaven, how great it was, and then he went to God, sat on his lap and God told him he had to go back because he answered his Dad’s prayers. We quickly explained to Abby that God answered our prayers a number of times in that Preston got to stay with us much longer than anyone ever expected him too and that heaven is a great place for someday when she would get to go and be with her brother. The next morning, Abby woke up very upset. She went to Preston’s room and then to ours. It was a school day so we got ready for school and she told me a few times that she was really sorry. She talked about this book. I know the books intention was to portray heaven as this great place and that if a loved one went there, they would be happy but what Abby took from reading from this book was that if she prayed hard enough, God would answer her prayer and send Preston back. She was saying sorry to me because she thought she didn’t pray hard enough. For 2 days she prayed for God to send him back. This was 2 weeks after he passed. She hates the book that they say is a true story and is mad at God for not answering her prayers.

Abby went back to school for a few days last week. We sent her on the day of Field days hoping it would be a fun day and that she could slide back into her class with hopefully little talk about her brother. She so was worried and scared to go back. She did not want to talk about Preston at all with anyone. We told her that she could go to school and if anyone said anything to her, especially upsetting, to go to her teachers and they would take care of it and we would come get her. Thankfully, there were only 3 instances, and all 3 were taken care of and she did have a great day at school full of fun and was able to go back for the last 3 days. That day though, Abby told me, one of her classmates said “you must be so sad about your brother, I know how you feel”. Abby said “how do you know” and the girl said “I don’t”. Abby said to me “why would she say this, she doesn’t know, no one knows except people who lost a brother or sister”. She is right. I don’t even know how she feels, because it is different loss. Tuesday at school, they have mass. I wish someone would have thought how hard this day would have been for her. At the end of mass, they were setting up for a funeral. It was the first thing she said when she got in the car, “there was a funeral today at church, I thought about Preston”. I didn’t know that she would have seen them setting up and it has probably happened several times while she was there and she just didn’t notice. I knew there was funeral that day because James had received a text earlier in the day from the funeral director saying he was there and Preston’s flowers still looked wonderful so I asked her if she saw them. She said she saw white flowers but didn’t know if they were his. I know we can’t avoid Mass and church, especially since she goes to Catholic school but I know it would have been really difficult for me as well. The next day, Wednesday, Abby graduated from kindergarten. I was terrified of going because they held the graduation in the church. I told Abby I was probably going to cry a lot and she asked if I could please try not to but could I pretend it was because I was sad about her going to first grade. As soon as we walked through the doors, Stephanie said to James “I go see Preston”. Everyone always asks about Abby but it must be so confusing to Stephanie. James asked her where Preston was and she said “Preston is in heaven” but I wonder what that means to her. We went in and sat down and Stephanie got up and ran to the firs row where we sat for the funeral. I went and got her and told her we couldn’t sit there, that was reserved for the kids and she said she was a kid. I moved her back and thankfully Kerry and Ellie came so Stephanie was happy. Ellie is one of her friends that she was yelling about “where’s my friends” during Preston’s funeral. She asked Kerry (Ellie’s mom) “where’s the rest of my friends”? Well Stephanie saved the day. Every time I thought I would start crying, she did something to draw attention. When the kindergarteners were all walking in, Abby started down the aisle and Stephanie yells “Abby wearing my shoes”. Thankfully they both wore the same shoes that day and I said “what shoes are you wearing”. She looked down and said “oh, there is my shoes”. She walked back and forth between Ellie and me before I asked if Ellie could sit with me. She started eating dried fruit and was feeding ellie. Then while the class up singing she started yelling “Abby, Grace”. Abby in high tone, Grace in low. Just like she was yelling Mickey Mouse, Donald Duck at Preston’s funeral. She made me laugh. Abby was adorable. She was full of smiles and just so happy. I am proud of her. At the end of the ceremony, we were over with the principle getting pictures and Father Dan was saying a few things when I see Ellie out of the corner of my eye kneeling in front of Alter moving her arms like she was signaling someone to come to her. I look up and see Stephanie on the Alter hopping across. I was mortified. She hopped all the way across and I picked her up. After Father Dan was done with his prayer, he came over and said not to worry, they have kids who get up and go sit in their chairs and asked Stephanie if she had fun. She said yes and he told her to go hop some more. I told him to please not encourage her. After there was a nice reception and I got a cute picture of Abby in front of her brother’s flowers (I will post in the pictures section). They were almost 2 weeks old and looked so pretty. I would like to think of it as a sign that he was with all of us that day watching his sister graduate.

School is out now for the summer. Being a “mean” mom, I bought Abby a present and wrapped it. It was a 1st good language arts and math activities workbook. It was hilarious to watch her open it. She opened it so carefully, and then when she saw what it was, she was not thrilled. She said “no thank you”. Funny thing is she has enjoyed doing the activities when she sits down to do them.

James had a birthday last week as well. It was weird to celebrate without Preston. I think everything we celebrate is going to have emptiness to it. Abby signed Preston’s name in her dad’s card and then was worried that it would make her Dad sad. Of course it didn’t, he was glad his name was in it and that I got him a balloon from Preston but still, we all wish he was here with us celebrating.

We are trying to keep ourselves busy. Abby has allergy shots twice a week and Stephanie starts swim lessons next week, twice a week and Abby has swim lessons twice a week as well. All different days and times. I am kind of looking forward to it; it will force me to get out of the house.

James and I would also like to thank everyone again for all your wonderful support. All the plants, flowers, cards, emails, and messages have meant so much to us. Thank you Lorie Roberts, Julie Roberts, and Kristi Olsen for holding a fundraiser at Julie’s fan appreciation party. Your thoughtfulness is beyond appreciative. You all heard about Preston, never meeting him, and have showed our family such kindness. Thank you to all the same people plus Jaime McCament for also doing a fundraiser to help earn money for Bob Doster to build a sculpture in memory of Preston. That is so wonderful as well. It is things like this and knowing that our son has had such an impact on so many people’s lives that help us get through each day.

My mom left last weekend and my mother-in-law will be leaving this weekend. We are so thankful that we have had such wonderful family help and support. You guys have been more helpful than you will ever know. Thank you to everyone who has been sending donations as well. We plan on distributing in Preston’s names to the three organizations that have meant a lot to us at the end of the month.

One year ago today Preston received his bone marrow transplant that we prayed so much would cure him from this horrible disease. He was 11 days shy of seeing his one year transplant birthday. I have so much anger that this did not work yet at the same time I am so thankful that it gave us nearly one year more with our precious son.

I wish I could say that things are getting easier. Days are much easier than nights, mostly because of the girls but I also walk around pretending that I will get to see him later. The girls hate to see me cry and as soon as I get a tear Abby tries so hard to stop it and if Stephanie sees she says “mommy crying” and then she says “I miss Preston”. I know it is healthy for them to see us cry and they do, but I also want them to feel comfortable around me and know that everything will be ok. Abby had a nightmare a few days ago that James died. She ended up in our bed and in the morning when James was not there, she got very upset.  I hate how scary this all is for her.  I wish I could pinky swear to her that this would and could not happen.  Every night I cry myself to sleep and wonder how he is doing. Two nights ago was the first time I was able to dream about him and was so upset that I couldn’t remember what it was about at first when I woke up. Later I remembered that it was that I was trying so hard to get to him. I could see him sitting at this big table with all these people around him eating. Tons of food but Preston was just sitting there waiting for someone to help him eat, something we would often do. I wanted so badly to get to him and help him but he just sat there watching everyone else. The simple things that I would give my life for to do again. I miss so much sleeping next to him, getting his hugs and kisses that we would sneak on the lips that he would always whisper (don’t tell daddy), and just the sound of his voice. People say you really never know what love is until you have a child and that is true but now I truly believe you really never know what love is until you lose a child. My heart aches so much for him. I would do anything to have him back. It has not even been 2 weeks and I know I will hurt more.

Last week was kept busy with planning his funeral and with people here visiting. The funeral home could not have been more wonderful. They took care of everything and always came to the house. I am so thankful that we did not have to actually step foot in the funeral home. I had written last week that we had to come up with pictures for a slide show. I narrowed it down to 40 and I thought we did a pretty good job and Hall Wynne did a great job putting them together. (I posted them under the photo section) James bought a giant digital picture frame and put all the pictures (over 500) that I originally picked on them and put it in living room for us to see all the time of Preston. This is good and bad. I love looking at him but sometimes I catch myself not even raising my head to look at the part of the living room because I know I will break out in tears. James and I wrote his obituary and his eulogy. That was really hard. You try and capture what an amazing, loving, kind, funny, and strong boy he was in just a few sentences or stories. Really the hardest part for me leading up to the funeral was handing over his clothes, knowing that this was the last time I would ever get to dress him and I didn’t even get to do that part. Of course we put him in a suit. Underneath he wore his Preston’s League shirt, his favorite fire truck underwear and his Batman socks. He looked so nice.

Abby was very scared about the funeral. We decided to have Preston cremated basically because I could not bear the thought of if we ever moved that he would not be with us. Abby was very upset about the process of this and actually until the day before, she thought she would have to watch it be done. It was a huge relief to her to know that she wouldn’t. I am also really glad that we had the viewing at the church prior to the Mass. I really did not think that we could handle it to do a separate viewing days prior. I think it would have been even harder on Abby. We had a car pick us up and take us to the church. The day prior to the funeral, the funeral home informed us that the Durham Police department called and asked if they could provide a police motorcade escort to the church. There were 4 police officers in front of our home that morning and we were so touched to know that they had been following Preston’s story and wanted to honor him in this way. We could not be more thankful. Preston would have been thrilled to see this happen. He would have thought that this was so awesome and it was. The girls were fascinated by how they drove in front and alongside of us and how the cars stopped for us to pass. Abby was cute a few times when cars wouldn’t slow fast enough. We could not be more thankful to the Durham Police Department for starting Preston’s Memorial Day off right. And it was a great distraction as well. We kept thinking about how much Preston would have loved it the whole way there and the reality of the day didn’t hit until we were about to pull in and 3 of the officers were standing in front of where we would turn into the church with their hands on their hearts. It was so touching. Thank you!

The actual viewing was difficult. We are so thankful for the portrait we had done because Preston did not look like himself. Abby was so upset by this actually wishing that they would have left him to look like he did the day he passed. It was very hard to see but at the same time made you remind yourself that this was not Preston, he was already in Heaven and this was just his body. None the less, it was hard, especially when we had to say our final goodbyes. The Mass after was lovely.

It began with us laying a cloth over his casket. Father Larry spoke about Preston. We are so thankful that he often visited us in the hospital and had a true sense of the kind of fighter Preston was and about our family. It made his words that much more meaningful. We wanted Abby to be a part of this service as much as possible and so she and our friend Kerry presented the gifts. She did such a great job. At the end of Mass, Abby escorted the pall bearers out carrying Preston with the tolling of a bell. I am sure most people don’t know the significance this was to our family. James favorite movie is It’s A Wonderful Life. He watches it every year with the kids. In the movie, they say “every time you hear a bell ring, an angel gets its wings”. In February when Preston was first sent home, Abby asked if she could ring a bell for him to give him his wings. While we were at Disney, we bought a bell that we had engraved with his initials and this year on it. That bell has been sitting in the box, praying to never have to use it since we bought it. Abby rang that bell all the way out of the church praying that she was giving her brother his wings. On Preston’s casket we had 5 roses with a green ribbon on it. 4 white for all of us and 1 red for him. After he was loaded into the car, each of us got to place the roses back on his casket. Abby was the last to put hers on and had just placed it to take it back quickly. She kissed her rose and put it back on him. It was the sweetest moment. Before they left with him we did a balloon release with all green balloons. It was great. Not one got caught in the trees. I can’t think of one thing that would have made the day better besides not having to have this day at all.

James and I are so thankful for all those that attended and for all of friends whom traveled from afar to be there with us for that day. It meant so much to us.

Thank you to Father Larry for rearranging your schedule to be there for us and Preston. It meant a lot to us that you performed his Mass. Thanks to church and for those who hosted the reception after providing food and making sure that there were no nuts because of Abby’s nut allergy. The reception was so nice. And thank you to Bonnie (my mother in law) for cooking such a wonderful meal for after the reception as well.

We know Preston’s ashes are ready but we are waiting for his urn to be delivered. Hopefully it will be in the next week. James was searching for an urn for Preston but really nothing was great. We wanted to find something that fit Preston and the things he loved. I looked up real quickly “truck urn”. The first website that popped up, I clicked on it and told James to look at it and said that this was it. It fit Preston perfectly. These were handcrafted wooden truck urns. They had several to pick from but we chose one that looked like fuel truck, which was Preston’s favorite kind of truck. He used to tell us how he couldn’t wait until he was older so he could drive one. James was worried about the cost, some boxes we would see were hundreds of dollars, but after looking for a few more, he agreed, cost didn’t matter. We know he would have loved this. This was perfect for our son. If you are interested in seeing what we chose, it is U7 on this site. http://www.gibsonwoodtrucks.com/urntrucks.html

Yesterday, the funeral home did stop by and drop off the things they had collected at the church and things there were extra of. They also dropped off his death certificate. It hurt so much to read it. 4 years old, never married, no kids. Life is just truly unfair sometimes. He never had the chance that so many people take for granted and yet many of these people complain about such stupid things.

I am very thankful that my mother in law has been taking Abby for her allergy shots. For some reason the bone marrow department shares space with the allergy department. Same check in desk, same rooms to get weighed in, and same rooms to sit and wait in for 30 minutes after your shots that Preston used to use for his clinic appointments. I am not ready to go there yet. Especially since I have a lot of anger towards Preston’s doctor and that department right now. We are not happy with how the day Preston passed was handled (not Dr. Martin), actually we are not happy with pretty much this past admission. Preston’s nurses are amazing and I am so thankful he had such wonderful nurses. No one on his team was working the day he passed and within 30 minutes of his passing, 3 of them were there and took care of him and us the rest of the day. They even packed up his room and brought us all our stuff. I am hurt and disappointed with the lack of communication from any doctor, especially Preston’s after his passing. No calls, emails, anything until the day of his funeral. To me, Preston should have meant more to them but it made me realize that to them, he was just another patient. Eventually I will have to get over not wanting to take Abby but for right now I am thankful I don’t have too. I would love to say thank you to Molly to from Child Life. She came in after Preston passed as well and did hand molds of us with Preston. We will treasure these for ever and ever. I am so thankful for these memories we will get to keep.

Quickly I wanted to say something about the day Preston passed. Besides being annoyed with the doctors working that weekend (both night and day) there were a few things about that day that we will never forget. Preston’s mouth had been bothering him a lot the night before. They called the ENT in the morning to have her come back and do another injection. In the meantime, we asked that his pain medicine be increased. Preston was very thirsty that night and requested some of his favorite drinks. Coke, pink lemonade, and even asked me to make him chicken broth. All he drank and later threw back up but it made us happy that he wanted these things. I fell asleep next to him first and in the middle of the night, he asked for James. In the morning around shift change time we switched again. Around 10ish that morning his breathing started becoming very labored and he was saying his belly hurt. He had not peed since around 2am. They had already given him Lasik and it did not make him pee. He was very agitated and after a while of seeing him like this and telling the nurse working that day this was not normal, she paged the doctor. He did not come but sent a fellow (not friendly at all) whom ordered a chest x-ray and another medicine to make him pee and left the room. A while later Preston was becoming more uncomfortable and another nurse was in our room. I asked her when the doctor would be coming in and she said that he was doing rounds right now and our nurse was in talking with him about Preston. I freaked out. Here we were, watching our child being very uncomfortable and complaining about his stomach which he never does and he is doing rounds on all the patients on the floor. This poor nurse though, it seems like every time something happens with Preston she is the one in our room at the time I take it out on. She went and got our nurse and the doctor so kindly finally came in to stand at the end of the bed and tell us Preston was uncomfortable but his chest x-ray was clear and we need to make him more comfortable. He suggested going up on his pain meds by .5 more. I basically told him he was wasting time because we increased by 1 last night and he was still uncomfortable and I didn’t believe .5 would help. He decided to increase his pain meds by 2.5 and then about 30 minutes before he passed, we asked to increase it again. About an hour before he passed, James was sitting with him, holding him, reading him a book. James is known with the kids to make up parts of a story or an ending to see if they are paying attention but this time he was just reading the story as is but Preston must have thought he was kidding in a part because he rolled toward James and said “funny joke daddy”. He was calmer and we all thought the pain medicines were working, he was finally comfortable. He said he had to go pee and we told him it was ok to go in a diaper. He said he really had to go and again we told him to go in a diaper. He said “I want to pee regular”. We were happy. He needed help to stand up so James and I both held him as the nurse held a jug. He happened to go a tiny bit #2 in the diaper so when we laid him back down, I cleaned him up and put a new diaper on him. James was holding him with his arm around him, holding his hand and I held the other hand and was rubbing his leg. Not even 3 minutes later his heart stopped. Maybe 30 seconds after, his heart beat came back for just a few seconds, and he squeezed James hand tightly, and that was the last breath our son took. We are so glad we were both there and he passed with us holding him and loving him. Since he was becoming more comfortable, James was thinking about running downstairs to grab a pizza. Thank God he didn’t. We are so proud of every last bit of fight and determination he had in his body, even to try and pass with dignity and go pee regular. We are so thankful that our nurses were so wonderful and they gave us as much time as we needed with him after. We called and had the girls come so they could come and say goodbye. It was truly the worst and hardest day of our lives.

James had to go back to work this week. The first day back he walked from his office over to south tower. He called me to tell me he was not sure how he felt. Two weeks prior we had taken Preston for his last walk on the same path he was walking. He was happy to be thinking about it but also sad at the same time. I am sure he will have lots of days like this working in the same buildings that Preston received his treatments. Honestly, I am not sure how he is doing it. I can’t even take Abby to go get a shot twice a week and he has to work there. He says he is glad because he has those good memories and those are the ones he wants to remember. Two days after Preston’s funeral we took Abby to swim practice and then we went to Target trying to just get out of the house. We got a bunch of things and as we were leaving I see him standing looking at Imaginext toys on an end cap. He turned to me with a toy in hand with a smile and I stood there watching him and the only thing I could say was “what are you doing”? The toy dropped and he looked at me with his face instantly changing. He said “I forgot, this sucks. I just wanted to get him something to make him happy”. I started crying and here we are making this scene. I wonder how many times things like this will happen. I know Abby has forgotten and it is over Stephanie’s head. She gets in the car and says “going to see Preston now at hospital”. I wish this was a nightmare we could all wake up from. This really does suck.

Thank you to everyone who sent flowers and plants, they were all very lovely. Thank you to those who brought over food, edible fruit, sent pictures, presents, and made books, and we love the star that was adopted for Preston too. It has all been so wonderful. Thank you to everyone who has made donations as well. If you sent donations directly to an organization or deposited into Preston’s account, please let us know so that we can thank you. Donations that have been mailed to us, we plan on splitting up among the three. I wanted to tell you why we chose the organizations we did. Big Love was an organization that helped us out while we were in Houston. Every week while you were inpatient, you would fill out a list for up to $25 worth of groceries, toys, or anything you needed and the Big Love volunteers would go get it and bring it to you. It was so helpful. I would love to someday start something like that here at Duke, someday when I have healed more. Meg’s Smile was the organization that was planning on doing the mini make a wish for the day for Preston. They had organized a day at a fire department and construction site. Preston would have loved that. When we had to cancel, Meg’s mom brought toys for the all of the kids to the hospital room and put his wish day on hold until he was better. Hess Trucks and games for Preston, craft stuff for Abby and Mickey stuff for Stephanie. Great idea to cheer up all of these kids. We also chose Tim Tebow W15H foundation. As you all know, Tim invited Preston and our family down to Tampa. Technically it was not considered a W15H but seeing how much joy this day brought to Preston and our family, giving back to this program is important to us. We are so thankful for everyone’s kind support and prayers. What we are going through is terrible and you all have been so kind. We know we have many, many very hard days ahead. It is nice to know there are so many people that care about us and about Preston.

Thanks to my mom too for taking care of all the flowers and planting everything for us. It looks great. And thanks Nana for all the great meals and to the both of them for all the help with the girls.

We miss you Preston so much. We love you, you’re the best!

There are a few funny things that we wanted to share. We are so thankful for our girls right now.

-At Preston’s funeral during the viewing, Stephanie was a little crazy. She had woken up around 3am that morning and did not go back to sleep. There is a family here in Durham that we are very close to and they have 3 girls. They love Stephanie and Stephanie adores them. Stephanie came running up to James and I and said “oh no, where are my friends” and yelled “friends, where are you”? It made us laugh and James said to her “Stephanie, mommy and daddy are your friends”. With the most serious face, Stephanie looked at James and said “I a baby, you big” and got down and ran up the aisle to find her friends.

-During the actual mass, Stephanie was getting ancy. I had brought some fruit treats, fruit roll up’s, crackers, and some Mickey board books. My sister in law was holding her right behind us. Stephanie was asking for gum and Claire gave her one of the books. It was silent in the church and Stephanie yells “Mickey Mouse, Donald Duck” and then said it again in a much lower voice. This is one great thing Stephanie provides our family. She can always make us laugh.

-I had promised Abby that we would do build a bear a few days after the funeral. We were on our way to the mall when James spotted a rainbow. It was faint above the trees. James said he would like to think of it as a sign from Preston that he was saying hi. Abby said “why can’t Preston make the rainbow bigger”. A few seconds later we went around a curve and there the rainbow was again and it was huge. Abby said that was a good sign but could we ask Preston to make it brighter? Since then Abby says Preston has been sending her lots of signs. That same night, we saw lightening bugs for the first time. We have not lived anywhere where we have had these in over a decade and it was the girls first time. Every night she has been looking for them.

-At Target over last weekend we decided to buy the girls a sprinkler. I wanted to get a big plastic pool or a slip and slide but James said no and that sprinklers stink too but agreed to get one. (I wanted something to play with the girls at home for all the days when I will not feel like going to the pool). The next day we got the sprinkler all hooked up and it stunk. It barely sprayed one foot high. It was supposed to be this crazy sprinkler and all these shoots off it. James tied a lot of the shoots off but it still stunk. The girls loved it though playing in the water as it ran down the driveway. My mom had brought 2 others sprinklers with her when she came to visit and we hooked up one. It sprayed back and forth really high. Abby liked it, Stephanie hated it and they liked the first one better. So we hooked up the third sprinkler. It was a circular sprinkler that maybe shot up 2 feet in the air. This one was a hit. The girls played in climbing up and down the driveway pretending to climb over the big Fountain of Terror. This was hilarious because this water was pathetic. We were sitting up on the porch and James joked that we should call the news so that they could see what we were doing now, that we make fun out of every situation. Abby yells to James “daddy, please don’t call Grace and tell her to come over”. We laughed and he asked why. She said “this is fun but it is embarrassing”. We really started laughing and I told her we could turn it off. She then replied with “well I guess it is not that embarrassing”.

Here is James eulogy if you are interested in reading it:

Preston James Winslow Eulogy 5-25-2012

Celeste and I want to thank you all for coming. The thought that Preston has touched so many hearts is very comforting. One might think that the struggle our family has undergone for the past two and half years would have led to much misery. However, despite drastic lifestyle changes, we were actually very happy most of the time. Really, the only unbearable aspect besides the separation from each other was the specter of today. That we could have fun at all is entirely due to Preston. He was so very easygoing and resilient. He rarely complained, and had an uncanny ability to deal with medical poking, prodding, and poisoning. Preston’s sense of humor and predisposition toward laughter was invaluable. That today is so painful is only a testament to the pleasure that came from Preston’s presence.

For those of you who might not know, our family is fond of good-natured teasing, and Preston was as good at it as any of us. For example, when I would tell Preston something like his urine was so smelly that it could make a garbage truck explode, he would come back with how meeting Tebow would make me so excited that the nurses would have to change me. He would regularly use his high-pitched mommy voice to tease her about how much she loves the movie The Burbs. He thought his sister’s reactions were hilarious when he would pretend to whistle a song playing on my phone, while pretending he was really whistling, while pretending he was fooling Abby. One of the phrases he said so often was “funny joke, dad” whenever he recognized that I was teasing him. That was actually one of the very last things he said on Saturday.

Anyway, here is a story that some of you already know, but it is typical of how Preston made us laugh. After watching fireworks at the Magic Kingdom, the monorails stopped running to Epcot, where we had parked, and so we were forced to take a Disney bus; Preston was the only one of us excited about taking a bus. The ride was bumpy and my dad and I joked with each other about how badly the bus driver drove. Preston said we shouldn’t pick on him and that he was a good driver. Two days later, we stayed for fireworks once again and coincidentally ended up taking the same bus with the same driver back to Epcot. As we left the bus, I told the driver how Preston said he was a good driver. Preston agreed and the driver said “thanks.” As we walked away, Preston said “aren’t you glad I didn’t tell him you said he was a crummy driver?”

Preston was an amazing little boy, and although we can’t help but feeling deprived, every minute we did get to spend together was an absolute blessing…a blessing magnified by our knowledge that those minutes were likely numbered. We miss him immeasurably, and look forward to a time when we may meet again.

We love you Preston, YOU’RE the best!

To say that the last few days have been hard is an understatement.  James and I are reaching pure exhaustion which is good because we are starting to sleep.  The days are better than the nights. The girls are a good distraction.   When you climb into bed at the end of the day all you think about is Preston.  There are no distractions and we just miss him so much. 

The past two days I have been working on pictures for a slideshow for the reception after Mass.  Yesterday, I spent hours going through pictures and was proud of myself that I was able to pick about 500 pictures.  Today the funeral director came over and I asked for another day.  I looked at these pictures and how happy Preston was.  He spent 492 days inpatient and he was the happiest boy even during hard times.  James happened to ask, which I guess we should have asked before, how many pictures we could have and he said 40.  I sat there through the whole meeting just thinking 40 pictures.  How do you capture your child's life in just 40 pictures?  Well, I think I did ok but it was so hard.  You can't help while looking at all these pictures how jipped we feel.  Preston was such an amazing kid and we are going to miss out on so many things.  However, at the same time you also feel so appreciative for such a wonderful child who made you so happy to just be around him.  We are so thankful for all the amazing memories we have with him.  Pure joy is what he brought to our lives.   I will post the pictures in a few days. 

I just wanted to post a few things.  The first is a wonderful story that ABC news in Durham put together of Preston.  What a great job they did. 

http://abclocal.go.com/wtvd/​story?section=news%2Flocal&id=8​669265

Secondly, here is Preston's obituary.

http://hallwynne.com/_mgxroot/​page_10780.php?id=1072848

Tim Tebow spoke about and posted a few pictures on his facebook page about Preston.  Preston had so much fun playing and meeting Tim.  We are so thankful for all the memories he has given our family. 

http://www.facebook.com/#!/TimTebow

Thank you to everyone for all your support, prayers, flowers, baskets, food, and donations.  James and I are so appreciative. 

Thank you allf or your kinds words and prayers. James and I are so appreciative.  Preston was so lucky to have so many people supporting him as we are as well.  We miss him so much. 

We have made arrangements.   On Friday, May 25th, there will be a viewing at 10am, Mass at noon, with a reception to follow at Immaculate Conception Catholic Church, Durham, NC. 

While making arrangements this morning, it was mentioned that next weekend was Memorial Day weekend.  James pointed out something interesting about this.  Preston was born on September 3, 2007; Labor Day.  Our son was born on Labor Day and here we are 4 short years later having to say our goodbyes on Memorial Day weekend. 

Preston, we love you so much!   You're the best!  

We will post more when we have more information. 

 Also, some of you have asked for our address.  It is:

701 Harkness Circle

Durham, NC 27705

This afternoon at around 1:45 Preston took his last breath and went to Heaven.  We are deeply saddened and although knew this would happen soon, we were not prepared to lose him today.

He is the sweetest, strongest, and the most amazing boy ever.  We were so lucky to be his parents and to have him watching over us now.

We will keep you updated with arrangements once they are made.  

Preston is hanging in there. He sleeps most of the day. He has been pretty uncomfortable regarding facial pain. Yesterday, the ENT surgeon came and injected a nerve block into the nerve right below his eye. It seemed to have helped but we are unsure of how long it will last. They said it could be hours or maybe a few days so we will have to wait and see. If it is effective enough, we will have to talk about how often they would be able to come and do this. You would think that as you watch a number of these procedures, you would start to become a little more comfortable but NO. I have learned one thing, ENT’s love to use scary instruments. They put cream under his eye, let it sit there a few minutes and then pulled out this needle that was probably 3 inches long. I immediately had to look away because I was getting sick already. Preston laid there like always, held my hand, and sat there while they inserted this needle right below his eye, kept turning and twisting it, and then injected the fluid to numb his face up. At one point when I looked up to see if they were almost done, you could only see maybe an inch of the needle. The good news is that it made him a lot more comfortable and lasted for about a day. This is great news for Preston although he doesn’t really like the numbness feeling and it is good news for James and me. We have been so exhausted the past few days. Preston had been so uncomfortable that he has not been sleeping well at night. James and I have been having to put our finger over his lip to apply pressure so that he would feel better. As you would fall asleep, he would moan again and you would try so hard to sleep and keep your finger there but really the end result was everyone getting bad sleep. Tomorrow he will be getting another nerve block done.

The next few days, I pray that he remains stable. James is leaving for Kentucky on Tuesday for part 3 of the board exams. Horrible timing. His test is Wednesday morning and he will fly back right after it is over. They only offer this test once a year and it is always in Kentucky and it is oral boards so he can’t take them somewhere else. If he needs to miss the test he will, but he will have to wait until next year to take it again.

We told Abby last week about Preston. We talked with Father Larry from our church to let her ask a few questions. Of course her questions are the same ones we have, why us? Why our family? She said she knew of a hundred kids she could pick instead. I wish it was someone else’s kid, I really do. She asked why Preston and Father Larry told her it was one question he couldn’t answer. Of course Abby, who has never really been told I don’t know about something, has to comment back that we could look on the internet, we have always looked on the internet when we have had questions we didn’t know before. Leaving the hospital that night, Abby said that she thought that God needed Preston because she had a special mission for him to do. We had talked about earlier that we were so lucky to get more time with Preston, over 2 years and she wanted to know why we got more time. Out of no where she asked if I believed Santa was real and I told her yes, but Santa needs helpers so we see a lot of helpers around (as we talked about during the holidays). She then said that she thinks Preston’s special mission was to help Santa and maybe that was Aidan’s mission too and that is why Preston got 2 more years. It made me smile. Two days ago while getting her allergy shots, the nurse practioner there asked me how Preston was doing. I told her not well and Abby said he is not happy. I asked her why she thought that and she said because he was going to go to heaven. I told her that he would be happy. There would be no more cancer, no more medicine, bandage changes, infections, etc…. I told her that Preston would always be able to look down us, that we were the ones that were going to be sad but we would be ok. I said that Preston would be happy because he will get to play all the time. She said to me so seriously, “he is going to be so sad when you are not there to kiss his knees when he falls and scrapes it”. I said that you don’t get scrapes or cuts in Heaven and she said “how do you know, you have never been to heaven, you don’t know what heaven is like until you get to go there and you can’t look it up on the internet”. My heart hurt for her. She comes to us with questions and this is the one time I wish we could give her the answers she is looking for. This case is the one time in her life since she has been able to ask questions that we will have to hope she will be ok with I don’t have the answers to these questions. We have always been the type of parents that have never told their child “I don’t know”. We may say we will have to look it up later, but we always make the best effort possible. That night we told her that we have to put all our faith and trust in God taking care of Preston and that Heaven will be even more than anything we could ever expect it to be. James and I also said that we need to be careful with talking about certain things like Santa. We don’t ever want her to doubt her religion and doubt that her brother will be in a better place, even if it is way too early for him to be taken from us.

For the past week we have been able to take Preston home on 4 hour passes. We are not sure how many more days we will get to do this for and even though he sleeps almost the whole time while we are home, he says he enjoys being home and just listening to everyone there and being home. He has been able to get up and play for a few minutes here and there each day. It is great to see him play with some of the things that he loved and some new things as well. It has been good for everyone I think. Right now, the most important thing for us is to just enjoy the time we have left with Preston.

Thanks to everyone for all your support, prayers, cards, donations, gifts, flowers, and messages.  It is comforting to know we have so many people there for Preston and our family. 

Preston, James, and I have had a very hard week. Sunday, Preston started not feeling well again. His mouth started bothering him and on Monday the ENT noticed a gray spot on the roof of his mouth that was not there on Thursday when they did the surgery. I know every parent is proud of their child and thinks there child is the bravest but I am telling you, Preston truly is. Between the 3 scopes up his nose without a single movement and then the procedure they did on Monday while awake, I don’t know he handles it. The ENT needed to get a sample. She came in, sprayed his mouth with lidocain, inserted a needle into the roof of his mouth, and then took a weird pair of scissors and cut of two pieces of his mouth. He held our hands but that was it. It was numb but he could still feel everything she did and he just laid there. I couldn’t even watch and he was so brave. Preliminary results came back showing that they did not see that it was fungus but he was not allowed to have any food or drink in preparation of they may have needed to go in and do surgery Tuesday.

Cultures from Thursday’s surgery came back Tuesday morning though and showed that the tissues did show fungus in them. This is bad. They ordered another CT scan, this time even more sensitive (smaller slices) with contrast to see how far this fungal infection may have invaded and was allowed to eat and drink but again after midnight, nothing in case we went to surgery again.

The results came back and showed what we were so fearful of. Basically, in order to try and contain the infection, we would have to let them mutilate our son. They would need to remove the roof of his mouth and remove his eye. Our hearts sank. There is no way we could ever do this to our child. We were praying to head into transplant again with a very small chance that we could prolong our son’s life in the next two weeks but sadly this infection happened. The doctors’s gave us the option to go ahead and do a bone marrow aspiration and check and see how his marrow has responded. His counts have been 0 for weeks but we declined. I would hate to put him through another surgery and if his marrow was empty enough to proceed, I would not want to know so that I could dwell upon how close we were. We always wanted to try and do everything we possibly could do to save our son and said when it got to the point where the quality of his life was affected then it would be time to be done. We have reached that point.

Our focus now is to spend as much time as possible with Preston and to make him comfortable. We are not sure how much longer he will be here with us. The doctors said it could be a matter of days or a couple of weeks. They said, especially with Preston, it is hard to predict. Preston has defied so many odds to get this far. We found out he relapsed over 5 months ago and he has stayed here with us much longer than anyone ever expected. He has fought harder to stay here with us than anyone I know. He has had so many obstacles and kept going. He has so much strength; I honestly don’t know he has done it.

Preston was diagnosed at 28 months old. It is over 28 months later and he has fought an amazing fight against this horrible disease and it is not even the disease that will have probably get him, it is this stupid infection.

James and I will have to find peace in this situation. I will be glad he will not have to suffer anymore; he never deserved any of this.

My fear of Preston always passing was that he didn’t know anyone in Heaven. I know that is a silly thing to think about but I was afraid for him. I do take comfort that he knew Aidan and I pray that Aidan will be one of the first’s to greet him when his time comes.

I love you Preston! We love you so much and are so proud of you. Please pray for peace and comfort for Preston.

Surgery went well last night. Better than we expected so that is good. He ended up going down much later than we were told. He went down around 5 and then was taken in at 6:30pm. They didn’t get started until about 7 and were done at 10pm. A doctor kept coming out giving updates and saying he was doing well and stable. After he was all done, the surgeon came out. They got a lot out, everything they could see and got the abscess out behind his eye. They had to break a small bone between the sinus and eye to get up there but they have said it was good because another abscess is less likely to build up again.

Before surgery, Preston’s doctor and the anesthesiologist told us it was likely he could have to go to ICU after, hopefully just for a day but they would be concerned about pain management and removing a breathing tube they would be inserting for surgery. I expressed my concern that we really didn’t want to go there but of course, it would have to be a wait and see situation. After surgery, they were able to remove the breathing tube and he was stable so we were able to go back to his room within one hour. He did great!!! It was a relief. His nose was bleeding but they said we should expect that for a few days but really his face was no more swollen than when he went in.

This morning he woke up and watched some TV. He did throw up blood but they were not concerned. We are trying to keep him lying on his side so the blood that is draining from his sinuses does not drip back into his throat. So if he lays on his side, blood drips down his face but if he lays on his back, the blood drips down the back of his throat. Down his face is much better. This should only last a few days. Infectious disease says that is actually good for the blood to be draining. His anti-fungal med is by IV so it is in his blood stream and as the blood now can finally flow through those spaces it is spreading the meds around. He is also going to start antifungal nasal rinses today.

This morning Preston was so excited. He only saw one of James and I and he only saw one TV. His bad eye also was able to track fingers better left and right and had a little improvement up and down which they hope to improve in next few days.

We are so thankful for everyone’s prayers and support. He is such an amazing fighter. He has been through so much and just amazes me with how strong he is. Today when James was leaving for work he yelled out the door to James “I love you daddy, you’re the best. Bye”. James heard him outside and came back in with a smile. This is the loudest he has spoken in weeks. He has been so soft spoken and just fragile sounding. It was so great.

Abby started allergy shots today. She will be going twice a week for at least 6 months since her allergies are so bad. Then they will drop her down to once a week. She did great and although scared, she was brave. After they gave her the shots she looked at the nurse and said “that’s it”. The nurse laughed and Abby said “that’s odd; I would rather get these than the skin test any day”. I am glad that went well too and she will not mind going again in a few days.

I really want to thank everyone for all their support and prayers. It means the world to James and me. The last few years and especially the last few months have been so hard. There is nothing more terrible than watching your child continually going through something like this. I just finished reading the hunger games and a few times I would think of a few of the kids we know that are going through this right now. Rosa, Kaitlyn, Aidan, and Preston just all thrown into this game that they can’t escape. Trapped, scared, and fighting for their lives (not against each other of course) and their parents helpless from the outside watching all of this. It is sick and torture. It is unfair. But yet I pray that Preston will end up a Victor.

This afternoon I received the terrible news that Aidan lost his fight and earned his angel wings. He passed away a few hours ago. He was 3. Their family was very similar to ours. Aidan was diagnosed as Preston was just finishing treatment in 2010. He relapsed about 3 months after Preston relapsed and got his bone marrow transplant in October 2011. About 2 months ago, he relapsed and they tried a number of DLI’s to get him into remission again. It worked for them but unfortunately he also developed major gvhd because of it. Sadly he developed breathing issues last night and was placed on life support and his organs shut down. Kelli was pregnant with their almost 2 year old Jaxon when Aidan was diagnosed. Aidan followed Preston’s path a few months behind and their family just sold their home where they raised him and are living in an apartment while waiting to move into their new home being built. You have dreams of playgrounds and sandboxes, decorating your child’s room, and it is all stripped away. Life is completely unfair. I pray for Kelli and Jared during this very difficult time. It is even more unimaginable than what we are going through this week.

Honestly last week I remember a few times talking with James while watching Preston continually have fevers and especially earlier this week when he just slept all day and was not himself. You try and convince yourself that passing may be for the best because they are miserable. James talked about how it would not be hard for the one passing, they would be happy. It is hard on the families and maybe that is why God has us watch this misery, to give us peace with it. I don’t know if as a parent you could ever be at ok with watching your child suffer and pass away but I do agree, I think it would give you some peace knowing that they are not suffering any more. For me, some days I ask that if this was the plan that God had in mind for Preston, why does it have to be so hard; but then I thank God for giving me every extra day that I have with him. We have so much to be thankful for and continue to pray that we will have many days ahead of us with Preston.

Please continue to pray for Preston and please say a prayer for Aidan’s family tonight.