View Full Version : 10 year update on my families struggles
It was 10 years ago this week that my family of 5 left our home here in Indiana and headed to the Fairview Medical Center on the east bank in Minneaplois,MN.The Ronald Mcdonald House there on Oak St. was our home away from home for 6 months. We were seeking medical treatment for our two oldest boys who were diagnoised with ALD a couple of weeks prior.DS#1 was in an advanved stage of the disease.He was given chemotherapy. DS#2 was in less advanced stage so he was given a BMT. DS#3 did not have this genetic disease so he was the bone marrow donor for DS#2.While we were there,I kept these boards updated on how things were progressing. These boards helped me keep my sanity.
DS#1's chemo was a last ditch effort to save him. It didn't work. He died 9 yrs. ago today two weeks after his 10th birthday.
DS#2's BMT was a success. He was left blinded and with some mild brain damage.DW and I will soon be seeking legal gaurdianship over him before he turns 18. He is 15 now and attends the school for the blind. He even ran track last fall. He is a very happy child.
DS#3 is almost 13 and has very little memory of the events that unfolded in Minneapolis.He is a very responsible young man who does great in school.
May the Lord keep giving you strength.
God bless you and your family. I'm so happy to see the Ronald McDonald House was a help to you. I did several projects with them during my last year in college, PR intern stuff. They were definitely feel-good projects.
I've actually cooked dinners as a volunteer at that exact RMH! The families there are very appreciative of our efforts, and we know we're doing A Good Thing. But our contact with them is so fleeting. We know not every patient gets a happy ending, but we hope. It's nice to hear that the place made a difference in the lives of patients and their families. Thanks for the update!
Gardenarian
2-27-13, 5:39pm
cx3 - much sympathy and blessings to your and your family.
I am so sorry for the loss of your son.
What a blessing that the rest of your family is doing well. I remember you posting while your children were getting treatment.
An anniversary is a fine time to remember all we hold in our hearts: love, sadness, joy.
cx3,
isn't it amazing that we never know how our lives are going to turn out, but I'm sure your boys will know you have done everything possible for them as parents. That's a gift of pure love that not everyone gets to experience.
Will keep you and your family in my thoughts and prayers, Cx3.
I've actually cooked dinners as a volunteer at that exact RMH! The families there are very appreciative of our efforts, and we know we're doing A Good Thing. But our contact with them is so fleeting. We know not every patient gets a happy ending, but we hope. It's nice to hear that the place made a difference in the lives of patients and their families. Thanks for the update!
The volunteers up there at the RMH were amazing.I only remember a few days out of the 6 months we were there when there was no meal prepared by some volunteer organization.Thank you for being one of them.
We have served a few meals at our local RMH, but it wasn't the same environment as there in Minneapolis.While at the RMH in Minneapolis the families were there for longer durations.Many over a year or even longer.Friendships would be formed amoung the families and the awesome staff. Grief was shared by families and many of the staff.Death was an all too common occurance.Fortunately,the victories outnumbered the deaths.
Mighty Frugal
2-28-13, 11:48am
I am so sorry for the loss of your eldest son. I am happy to read the meds worked for DS#2.
I remember reading about your family on the old boards. I'm so sorry about your oldest son, but happy the middle son is doing well, and the younger one too. Thank you for updating. You've certainly been through so much and I feel for you!
It's great to read that there is happy news, along with the old mark of the loss of your first child. I'm sorry for the loss of your first child, but happy for the successes of your second and third.
flowerseverywhere
3-1-13, 6:56am
I remember when you posted during the height of your sadness. I have sometimes thought of your family as we come across other families who experience the tragedy of a gravely ill child.
Your other children sound courageous and loving, and I am happy for that. It was great to get an update.
Does your middle son attend the school in the Indianapolis area? We use to do the Broadripple Art Show down the road from the school campus and it seemed so beautiful from the road.
Does your middle son attend the school in the Indianapolis area? We use to do the Broadripple Art Show down the road from the school campus and it seemed so beautiful from the road.
It is a beautiful campus.My son did some short course work there.He doesn't attend there regularly because its 2.5 hrs. away. He attends a faucilty closer to home.
Thanks for the update. I've been on the boards for years and remember your posts. Your family has been through a lot. I'm glad things are going well now.
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