Preston's fight against Acute Myeloid Leukemia

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.