Fifty Plus (50+) - OT: news about my 6y/o grandson Bad >> Good :-)

The little tike in my avatar is my now 6 y/o grandson Tyler. In march he was diagnosed with stage 4 Neuroblastoma, a childhood cancer. He was recently found to be cancer free.

Friday morning he had a seizure. The made a preliminary diagnosis of ADEM, a rare brain disorder resulting from a viral infection or immunization. It is generally curable.

Today they revised the diagnosis to PML, a terminal viral brain infection. There is no treatment. They give him 6 - 12 mos. But they also said there is a small chance that this diagnosis is wrong. They did a spinal tap to confirm. We'll know in a few days.

I'm in total shock. He is my best buddy. I used to ride him in the bike seat on the hybrid, pick him up at school, and ride to the park. In August I got the tandem and rigged up a foot rest so he could ride on that.

If you pray, please pray for another mis diagnosis and a complete healing.

You can read his story at http://www.caringbridge.org/visit/tylerharrison

Man that is absolutely terrible news. I had to sisters that died of cancer, so I can relate to what your going through. I sure hope they are wrong. My prays go out to him and his family.

I am so sorry to hear this. I will definitely keep Tyler and your family in my prayers.

Very bad news indeed. I am hoping it does turn out to be a misdiagnosis. I will keep positive thoughts coming his way.

Bad news like this is especially sad when a child is involved. Never give up hope.

It sucks to see kids sick...thoughts and prayers for him and your family.

:( I'm praying for him.

I hate coming here hearing bad news about any member or their family. This is so sad, I am praying for him and you and family. I am also praying for a misdiagnosis, seems there were a few already so..

Hang tough.

My best wishes, thoughts and prayers.

Having lost two children of our own, and almost a third, I can relate to some of the fears and emotions you're experiencing. There is no decription for the gut wrenching reality of the doctors reports that suck the spirit from the depths of your heart. The emotional roller coaster of good news and setbacks is mind numbing. To see our beloved children suffering these horrific deseases can transform even the strongest of us into a sobbing, emotionally drained empty shell.

I read Tyler's story on the link you provided, well as much as I could bear to as my own memories started to overwhelm me.

Our thoughts and prayers will be with you every day. May Tyler live a long and healthy life filled with the love and family he's grown so accustomed to over the past six years. May your family find the strength to deal with what ever the future holds in store. May our Gods and our doctors finally free our precious children from these terrible diseases.

You are not alone my friend, we're all praying for Tyler.

God Bless.

My thoughts and prayers are with you.

My prayers are with Tyler, his family and you.

Sometimes life just plain sucks.

Sorry to hear. Let's hope for that misdiagnosis. Best wishes for a positive outcome.

I am praying for him and his family.

Paul

My thoughts and prayers are for you, your grandson and family.

I'm so sorry to hear this terrible news. Tyler and your family will be in my prayers.

Please keep us posted.

Having lost two children of our own, and almost a third, I can relate to some of the fears and emotions you're experiencing. There is no decription for the gut wrenching reality of the doctors reports that suck the spirit from the depths of your heart. The emotional roller coaster of good news and setbacks is mind numbing. To see our beloved children suffering these horrific deseases can transform even the strongest of us into a sobbing, emotionally drained empty shell.

I read Tyler's story on the link you provided, well as much as I could bear to as my own memories started to overwhelm me.

Our thoughts and prayers will be with you every day. May Tyler live a long and healthy life filled with the love and family he's grown so accustomed to over the past six years. May your family find the strength to deal with what ever the future holds in store. May our Gods and our doctors finally free our precious children from these terrible diseases.

You are not alone my friend, we're all praying for Tyler.

God Bless.

Eloquent words written from the heart with the pen of experience. I am humbled and moved.

I certainly appreciate all of the kind words from my "BF family."
BT

My older brother died at age 8 from a rare form of cancer, after my older sister had died of Meningitis at age 4. I don't think the family has yet recovered. So my heart and thoughts go out with you, your children and your grandchildren.

Lost my dear younger sister at age 50 and other members of the family. Can't imagine how I would feel if anything happened to my own grandson who is very special to me, also. Best hopes for a better diagnosis.

If you pray, please pray for another mis diagnosis and a complete healing.

You got it. Will hold you all in the Light.

I will remember the lil guy in my daily prayers.

Different disease, different treatment, and I know nothing anybody can say will make your next few months any easier. For what it's worth, though, my son was diagnosed with a potentially terminal cancer in June of 1983, when he was 2. He turned 29 in September and is doing fine--got a college degree, working at a job he enjoys, enjoying life in a city 1000 miles from home. We pray your story will end as happily

Get Well T

I'm sorry to hear about that Bob. My thought and prayers for him. Hoping here that the diagnosis is reversed.

good grief what an emotional roller coaster! have you considered a new team of doctors?

I truly hope the docs are wrong, Bob. Few things can be worse than what you describe. All our thoughts to you, his parents and your family.

Dear bobthib, I'm very sorry to hear your news. I'm really sorry. I really hope this is a misdiagnosis.

@crankyolddude: I dont know how you coped. I wouldn't have been able to. You are a stronger person than I am.

I am so sorry to hear this news. There is nothing more heartbreaking than an illness in your child or grandchild. We will pray for him and your family.

Dear bobthib, I'm very sorry to hear your news. I'm really sorry. I really hope this is a misdiagnosis.
Amen. That is our prayer. time will tell.



@crankyolddude: I dont know how you coped. I wouldn't have been able to. You are a stronger person than I am.
Another Amen! Cranky has gone were I fear to go.

Bob, not much I can say that hasn't been said already. But rest assured that when my knees hit the floor tonight you and Tyler will be upper most in my thoughts and prayers. I hope God blesses both of you.

I can't think of any words that measure up to your situation; just know we're all pulling for your grandson.

Heartbreaking and terrifying. I hope and pray that things work out well. We will be thinking of you, Tyler and his parents.

Another Amen! Cranky has gone were I fear to go.

Like your family hasn't walked through Hell already!

What is important is that you continue to remember that other families have tread the path your family finds itself on now. They are very familiar with the emotions, doubts, and fears that you're all experiencing. They understand what you're going through.

Tyler has his wonderful family to turn to when he's in need of comforting or reassurance. Your family has several avenues from where it can look for comforting and reassurance. While none of those avenues can take way the pain and the fears, what they can offer is understanding. The natural tendency is to be strong and keep our emotions and fears put away inside someplace but the reality is that we all need some comforting somewhere along the way.

Though this is a very personal time for your family, you do not have to feel that you're treading down this scary trail all alone. Just like during Tyler's Cancer ordeal, when it's time to reach out there will be a hand or an emotional shoulder to lean on.

Still praying for a less serious diagnosis.

My prayers are on their way...

My thoughts and prayers are with you. A misdiagnosis or a miracle please.

Bob:
I sent you a PM....

Like many others have said, you're not going down this road alone. Our thoughts and prayers are with you and your family, and Tyler.

Bob:
I sent you a PM....

Like many others have said, you're not going down this road alone. Our thoughts and prayers are with you and your family, and Tyler.

Got it. Thanks for everything.

Best wishes for Tyler.

Thoughts and prayers for you, Tyler and his parents.

thoughts and prayers going your way as well-- it is heartbreaking news- hopng for a mis-diagnosis-

train safe-

Sending my prayers.

It seems so unfair that a youngster that age has to go through so much. I can only imagine what you and your family are feeling right now. Our prayers are with your grandson and your family. We'll all hope for the best.

my thoughts and prayers for your grandson and all family members,I sincerely hope all works out

I can't think of any words that measure up to your situation; just know we're all pulling for your grandson.

Same here. I can think of words for most things but not things like this. I lost my dad to a brain tumor about 19 years ago, but words are still just very hard to come by for me in these cases. I am pulling for Tyler.

Bumped.

Anything new to update, Bob? Any good news out there?

Sorry for neglecting to update my bf "family." It has been one horrible week. However, thank God, the out come was good. About noon on Tuesday my son in law called from the hospital that both the MRI and spinal tap results came back NEGATIVE!!!!!!!!!!!!!!!!! :D :D :D :D :D :D

I called my wife at work and I was crying so hard with tears of joy that she thought he had died or something. I finally managed to get the good new out and she started balling too! It was like the weight of the world was lifted from me.

So here it is Thursday night and I'm lying in the cot next to his bed. It's my turn to sleep over cuz daddy has to work days tomorrow. Tyler is doing great, and there is no sign of any brain damage. He's sleeping now, but during the day he's quite normal, but still bedridden. Tomorrow he'll get out of bed for a few walks around the nurses station, and some time sitting in the chair.

He still has a ways to go. This all started because he only has one kidney left, and it was damaged by the last treatment. It also brought on the seizure last week that lead to the MRI that lead to the PML diagnosis. That kidney damage also caused him to retain fluids, which raised his bp, which lead to the brain bleed, and on it goes.

He's getting a bit tired of being in the hospital. He doens't complain, but he wants to go home and play with his toys from Christmas. He's been here since 12/30. And it looks like it will be at least 3 weeks more. At least. I don't care how long, so long as he gets better and can go home. But the sooner, the better!

Thank you all so much for all your thoughts and prayers. They have been a big help. I had my wife and daughter read this post. They were very moved. TYler doens't read yet, but I told him too. He can't wait to get back out on the tandem.

THanks again, from all of us.

Crying with joy right along with you guys.


Thanks for the update.

Great news, Bob! The entire 50+ forum has been holding it's breath.:thumb:

Fantastic!!!!

To paraphrase Tony the Tiger "THAT'S GREAT!!!!!!!!!!!!!"