Na Na Na Na..Hey, Hey , Hey Your're Going Home!

Na Na Na Na...Na Na Na Na Hey, Hey Hey Goodbye... Na Na Na Na Hey, Hey, Hey You're Going Home! That is the goodbye song that Eric had sung for him from the nurses as they clapped and cheered while they put his graduating 100 days post bone marrow transplant ribbon on!( I'm putting pictures on of the nurses singing and cheering for Eric) It was the prettiest SONG I think I have ever heard in a long time! Those words have never meant so much! I can not believe it we are here but yet today we had a hard reality reminder that this is really just the beginning of a long journey.. as we were told today in Eric's last survivor ship discharge class the hard part of the transplant although tough was not the biggest hurdle, the next 2 to 3 years will be the most crucial and defining on if your transplant was a success.

As we sat in the class, there were 3 other bone marrow transplant survivors with their caregivers (wife's) learning about all the restrictions and new life we will have to lead in order to survive our transplants. It was so overwhelming, the doctor warned us the day before that this class would be overwhelming and some what scary to hear what we will experience and have to face over the next crucial 2-3 years but I do not think I could have been prepared for all of it. I find myself feeling a little uneasy, scared to bring Eric home now. I almost wanted to say maybe we are not ready to go home, maybe we need to stay here in this sterile and clean world with all the medical team surrounding us. I thought just getting the house ready and Eric's environment was our big obstacle but really it is so much more.

First off Eric's food all has to be cooked at a certain temperature, even his deli meat for example for just a sandwich has to be cooked. He can not eat certain things, no soft skin fruits or veggies, no crowds or groups, no church, needs to wear a mask at all times, always needs to wear sunscreen all over his body all year long, the days up at Bear Lake short sleeve shirt sitting on the boat and beach are gone- LONG SLEEVE SHIRTS AT ALL TIMES- FOREVER! No digging in dirt, no yard work, no mowing lawn for at least 2 years. No vacuuming or being near the vacuum when on, no dusting or even being in the room when someone is dusting. Can not be near standing water, no plants or flowers in doors, no real Christmas trees. We have to get Eric a medical ID braclet that he will wear at ALL times saying that he is a bone marrow transplant survivor and that he needs special care, listing his transplant date, blood type and restricitions.

From the chemo and transplant Eric is at high risk from the sun to develop and activate Graft Vs. Host or skin cancer so this is extremely important. Eric has this whole time not been allowed to wear his contacts and had to wear his glasses due to the high risk of infections, he will not be able to wear his contacts for at least 6-8 more months until he is off some of the immune suppressed anti rejection drugs. Then they explained to us the that 80% of transplant patients develop shingles and that 60 % of transplant patients develop Graft Vs. Host as some point. You are at the most risk for this the first 2-3 years after your transplant and the especially crucial time is 2-3 months period when they start to slowly take you off some of you immune suppressed anti rejection drugs- that is as they called it " a really scary time". This will be in about 6-8 months from now.

The list goes on and on and as Eric and another survivor in the class said " So we pretty much we are bubble boys- we can't live life." So many restrictions, so much more to worry about. It is very overwhelming and I think a bit disappointing considering he has been couped up and already so isolated and restricted. This is going to be so hard. I am posting a picture of one of Eric's good friends he met here who also is going through his bone marrow transplant. We bonded so much with him and his mom, when we wouldn't see him we would worry that he was back in the hospital. His name is Patrick from Orlando, FL he is 38 years old with the exact same rare cancer as Eric MDS/ Myleodisplastia. He is not married and has no children, he has been dealing with his cancer since 2007. This is his second bone marrow transplant- the 1st one did not take and he developed Graft Vs. Host in his gut which almost killed him. He first had Lymphoma which he did the 1st bone marrow transplant for then it turned into MDS what Eric has and now the second transplant.

As Patrick said "It's going to be hard Eric not to see you anymore, everyday here- I am going to miss you guys!" We will miss him to but we will keep in touch and will be praying for him also. Patrick was set to go home a week after us on 12/17/09 however on Thanksgiving was hospitalized with Graft Vs. Host in his intestines now, they are treating him now with drugs that so far he is responding to. You see this is the life we live and will continue to live. Much like the past 7 years we have been living in fear, worried from day to day what each blood test would show next, worried if anything would work for Eric. It looks like the next few years will continue to be more of the same.

I am sorry if I sound a little negative but I just think today it has been a really hard day. It's hard after all this we have been through, after all the dark days and fighting to stay alive and you hear someone tell you that the fight has really just started and that you are not out of the woods. Despite all of that I know the Lord is there for us and has a plan, I know that with our continued faith that we will get through it. Even with bumps in the road and set backs we all have a purpose, gods plan. It may not be the cure we want but it is what God has in store for us. We all must face our trials and fears with faith and find joy in the journey as hard as that is.

Alot of questions...Are we suppose to go home? Is Eric really ready? Will it be okay? Will the doctors at home be able to always be prepared and looking out for everything they need to? Will they be able to catch things early? I just keep thinking about all the things we have to worry about and it seems so much...I guess this is just a worry thing, I will get over this right? I will close my eyes, get down on my knees and pray to the Lord again for more strength...more help to just get to the next step... more strength to endure what he has in store for us. I know he is there for us, all of us and the power of prayer is an amazing and humbling thing. I pray for his love and strength, I pray that Eric's body will continue to respond and that we will have the comfort we need to get through the rest of our journey.