At the beginning of January Eli brought home this letter from school for Troy and me. Can you read it? It says:
Dear Mom and Dad.
I made a new hope and dream for 2013. It is I hope to help others when they need help. I hope to get better at math strategies. I'm thankful for you guys because you are not afraid of telling me bad news.
From Eli
To say this brought tears to my eyes is an understatement. As you know, we've had to give Eli quite a bit of bad news lately. This past week we had to give him even more.
As it turns out, Eli also has Adrenoleukodystrophy (ALD). We've actually known about this for a while but it was unclear if his disease was active &/or progressing. Eli had a repeat MRI recently that showed a small but clear amount of progression of the demyelination of his white matter. Unlike Henry though, his is early and at this point he's showing no outward symptoms. Due to that, Eli is eligible for a bone marrow transplant (BMT) to halt the progression of his disease.
We're in the process right now of planning for his BMT. We're hoping to get started at the end of February at Amplatz in Minneapolis. I'm not sure if I've mentioned it before but the doctors at Amplatz are the premier experts in the world for ALD patients. They are one of the only hospitals that does BMTs on these boys. We are incredibly fortunate to have this right in our back yard.
Eli's schedule will go something like this:
- 5 days of outpatient pre-op testing and lab work
- Couple of rest days
- 3 or 4 days of inpatient chemo
- At least a week of rest days at home
- Then Eli will be admitted to the hospital for about 6 weeks.
- This will include 8 days of chemo, then a rest day, then transplant day. After that he'll spend the rest of the time recovering.
- Once he's ready to come home, we expect him to be home-bound until around October.
This is a long, scary process. Eli is going to be a very sick little boy for a while. But, we have every reason to be hopeful. Eli now has the opportunity to grow up to be a normal, healthy adult - that's amazing!
Think good thoughts for my little guy and my bigger little guy too. Actually we're all going to need them.
Amazing, Jenn. Thank you for spreading the spirit of your kids and the wholehearted faith that your family represents. Prayers for you, Troy, Henry and Eli as you embark on another tough journey.
ReplyDeleteMeredith Vander Zee
(Friends with Bruce and Rachel)
Much love, and you are in our prayers every day.
ReplyDeleteYou are in my prayers every day- each of you is. Please tell Eli he is helping others and will continue to, in his strength, and his outlook, and with his love.
ReplyDeleteI will be fervently praying for strength for your whole familuring this time. I pray you find joy in that which is joyful and find comfort in times when you need it the most.
ReplyDeleteMuch love and admiration,
Cami
Jen,
ReplyDeleteYou and your family and those sweet precious boys are always in my thoughts. You are so strong and that strength has been passed down to those sweet boys of yours.
Many hugs to you and I will continue to think good thoughts for them both.
Leigh H.
What an incredible little boy, just like his brother! You and your family continue to be in my prayers. <3
ReplyDeleteDear Jen and Family,
ReplyDeleteWe are so far away, but you need to know that the East coast is praying for all of you. Can we put your names on our prayer list as well as Derrick's church? I know from my own experiences the stregth that prayer can give you. This strength can actually be felt. Amazing the power of the Lord. I will keep up with your family through your blog and cousin Jerry. Wish we were closer, but you are close in our hearts. Love, Ann and Harvey
The Schallys Family:
ReplyDeleteI have just received your blog from a friend. Also, this week I received the following article from the chaplain in my mother's church. Perhaps due to being coincidental I feel the need to share.
Chappy’s corner: “A crash landing?”
Ole boarded a plane from Minneapolis to Miami. After taking off the pilot announced to the passengers that the plane had four engines, but one engine was not working so their flight time would be one hour longer. About five minutes later the pilot announced that a second engine had failed and so the flight time would be two hours longer. After ten minutes, the pilot announced that a third engine had failed and the flight time would be three hours longer than expected. At that point Ole turned to the man sitting next to him and said, “If that fourth engine fails we will be stuck up here for a long time!”
Obviously Ole was wrong. If the fourth engine failed, he wouldn’t be stuck at all. His trip would be over with … a crash. For Ole and others it is better to go slow and get there, then not get there at all. That is good advice for all of us as we live our lives. Like Ole all of us have had to wait at times in our lives.
But sometimes waiting is not the option. Sometimes that last engine does fail and we find ourselves headed for a crash. We wait hours by the phone until, the doctor calls to tell us the cancer has returned. We wait hours for the boss to show only to hear “you’re being laid off” We wait months for our college son to return home only to get a knock at the door and hear “there has been an accident”. What does one do when we wait and the only news we seem to get is “bad” news?
I suppose we could live in fear, but a better way is to live in faith. To do that requires us to remember who gave us life in the beginning. God made us and God has a big interest in our lives. He doesn’t want us living in fear, but rather to trust in Him. Jesus said, “God so loved the world that He gave His only begotten son that whosoever believes in Him shall not perish, but have everlasting life.” (John 3:16) Jesus sacrificed everything for us so we could have a life with Him now and forever. That is the good news and as we go through life there are few sure things, but God’s love in Christ is a sure thing.
Now most planes fly safely, some do crash. One could stop flying completely, or one could simply say, “My life is in God’s hands” and I can’t think of a safer place for a person to be.
Keep the faith and trust in God. He sees the BIG the picture.
I'll continue to pray for your family. LP
Dear Schally Family, As Eli's Kindergarten teacher at Kinderberry Hill, I know how special he is. My heart goes out to you all. Eli you will be on my mind and in my prayers.I will follow this blog and look for updates on your progress.God be with you and give you His peace.Mrs. Lois
ReplyDelete