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Update On Mary, Shannon's Sil


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Such sorrow. Prayers and thoughts for baby Jackson and the family.

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Hi Kay,

Just got home a bit ago as Mary had a rough evening.
I am sorry I couldn't explain about little Jackson earlier. I just wanted to get prayer warriors on the job for him. I need to make my own account on the forum. I will do that soon. Things are just so crazy here.
Little Jackson had surgery to put a line into his chest and his head for chemo treatment and directly into his spine and brain. They began chemo but his temp spiked to over 104 and they did tests discovering a severe infection Leptomeningeal Disease which is filling his ventricles with so much fluid and has put so much pressure on his brain... Causing blindness in both eyes. They are operating in a few hours to put an internal and external shunt in to help drain the fluid. The tumor on his brain stem is also growing rapidly. They could not remove it without irreversible deadly damage. So the 15 percent survival is now down to 0%. Mark and his wife have chosen not to do chemo or treatment when it will only wreak havoc on his tiny body and take him anyway. They would rather keep him as comfortable as possible for as long as he has left here. It may sound like they have given up, but unless a person has a child who is this ill with no survival rate... We cannot understand. Maybe, just maybe, if the shunts work quickly in getting this meningeal infection wiped out, they may change their minds and continue chemo. But that would only bring suffering and still not much real chance for survival.
They are devastated at this point. Jackson wakes some but cannot see. How frightening this must be to a baby and Mark and his wife.
They will stay in Memphis for now but when he stabilizes enough to be flown back home to CA... They want that so to be with family.
I'm exhausted. Mary did not have a good evening. And is having a rough night.
Thank you for the prayers.
God bless.

Butch.

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My dear Butch, I am so sorry to hear this news about baby Jackson. I am relieved to know his parents will not allow anything more than that which brings him comfort. That is not giving up. That is loving your child as much as any human being can love. I honor their decision and I know it is one I would make also were it me in their shoes. So so painful.

I am sorry Mary is having some tough days. I would think she has to be so exhausted from all that has happened also.

Thank you for updating all of us and I know all of us here are praying and thinking about all of you. Take care of yourself.

Peace

Mary

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This is very sad news, Butch. I am so sorry. Please know that prayers continue for all the family. I am hoping that Mary will have some better days. Sending big hugs to her. Take care of yourself during this journey.

Anne

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Hi everyone,

It's Butch. I tried and tried again and again to create my own account here to no avail. It's repeatedly saying the answer to the registration question is incorrect. So I gave up.

Thank you Kay for updating things here. In spite of the loss of your Mom. I'm so very sorry again.

Thank you to everyone for prayers for Shannon's baby nephew. Its truly heartwrenching. I can not imagine their pain right now.

And for continuing to uplift Mary as well... Thank you.

I will post under Mary's account I guess since I'm obviously failing at trying to register for myself. Nerves are running thin here and exhaustion very high. On my way out back to the nursing home as Mary is having another tough evening.

God bless.

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Thank you Marty,

I figured out the registration. Just waiting on confirmation email back. Mary is sleeping. I left. I need rest. Hopefully she will sleep all night.

My user name is R.Everit55. I go by Butch since a small child.

Goodnight

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I received your membership application a few minutes ago and validated it for you, Butch ~ so you now are free to use all the features of our site ~ and I am so sorry for all the reasons that bring you here :(

I promise, though, that we are here for you and we will take good care of you. Get some rest, and know that our heartfelt prayers are with you and your family tonight

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Butch has started his own thread on Anticipatory Grief, just wanted to let those know that have been following Mary's condition and that of little baby Jackson.

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  • 3 months later...

It's been a while since we've had an update on Mary, as you can imagine, Butch's time is consumed with her care, but this morning I received this:

Hi Kay,
Wow, thank you for thinking of Mary and myself in the midst of your own health crisis. I pray things are not serious and can be made better. Not sure what's going on, but I will pray that your surgery will help.
Mary is swiftly declining most days. She can not talk. She is unable to even move much now. It seems all of her muscles, including those needed to talk, and to swallow (she has a feeding tube) are all seizing up. This is terrifying for her. It's heartbreaking for myself and our family. ALS takes everything away but the hard thing is that her mind is so strong. It almost would be better if she didn't know and wasn't aware and just didn't realize what is happening. She is struggling now too with breathing. But that is minor for right now. We are all keenly aware that breathing will be the last thing to go and that I will have to make the agonizing decision to let her go in peace. I thank God that we have Hospice help. At this point I just want her to not worsen and to get through Christmas. For our son and our grandsons. Not for me as much as for them.
I can honestly say I do not have "hate" in my heart for anything. But I can say that I truly HATE this disease with every breath I have in my body.
It's 3am. I'm awake. Sleep is very infrequent for me as I just lay beside my wife hold her and making sure she knows I am never leaving her side. I literally count every breath she is still able to take on her own because I do not know when that will be taken as well.
I haven't been to the forum. I know I probably should have. But time is precious right now. I will tell Mary you are thinking of her. She will hear that and know...
God bless you Kay and I will keep you on my prayer priority list for your health and your surgery.
Butch.

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Oh Kay. What a heartbreaking message. Butch is such a good man. Please, if and when you respond to him, let him know that we will be here for him whether he has time to "be here" or not ~ and his Mary remains in our thoughts and prayers. I am so sorry . . . :(

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I already did, and reminded him that when the time comes, if he comes here, we will be here for him in his journey.

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