R.Everit55 Posted September 4, 2014 Report Share Posted September 4, 2014 I figured the registration process out... I am so wiped out, I was not thinking straight. My given name is Roy... But since before I can recall I've always been called Butch. So I just wanted to let y'all know its me Mary's husband. I'm turning in. She is sleeping hopefully I won't get a call during the night that she needs me. Baby Jackson is more awake tonight. He has lost his sight. And in a lot of pain. But Mommy and Daddy are there and playing his favorite Thomas DVD's he is laying listening. It's keeping him still. He's not that verbal so the major signs of pain are overall agitation and crying which really makes pressure and pain worse on his little head. The shunts placed are working and draining more than they expected. So the future is uncertain. They may decide on continuing treatment is his temp keeps lowering and his blood counts go up and this infection clears. It's possible he can have some small amount of radiation. But just the chemo drugs alone is terrifying. Goodnight everyone. And God bless you for taking time from your journeys to uplift baby Jack Jack up in prayer and Mary as well. Butch. Link to comment Share on other sites More sharing options...
MartyT Posted September 4, 2014 Report Share Posted September 4, 2014 Blessings to you and your family, dear Butch, and as we send you our prayers tonight, we wish you a peaceful and restful sleep . . . ♥ Link to comment Share on other sites More sharing options...
enna Posted September 4, 2014 Report Share Posted September 4, 2014 Rest well, my friend, and I'm glad you figured out the registration process. I am not happy for the reasons you are here, but I'm glad you are here because we take care of each other. You will find this to be an amazing group of people who understand grief. We learn from one another. Anne Link to comment Share on other sites More sharing options...
kayc Posted September 4, 2014 Report Share Posted September 4, 2014 Butch, I started my morning with a prayer for Jackson but will continue throughout the day. I hope Mary and you both slept well last night and that you are able to focus on your work today. Keep us posted. I will direct the folks on the other section that you are here. Link to comment Share on other sites More sharing options...
Wifflesnook Posted September 4, 2014 Report Share Posted September 4, 2014 Butch I have followed all your sad path and I am so sorry. We are all here to do the only thing we can which is listen and pray for your family. Jan Link to comment Share on other sites More sharing options...
Queeniemary Posted September 5, 2014 Report Share Posted September 5, 2014 Praying for little Jackson, Butch, and for all of you. QMary Link to comment Share on other sites More sharing options...
feralfae Posted September 5, 2014 Report Share Posted September 5, 2014 Sending healing love and prayers for everyone, hoping things was a bit these next few days for baby Jack Jack and Mary, and that you have time for some rest. fae Link to comment Share on other sites More sharing options...
R.Everit55 Posted September 9, 2014 Author Report Share Posted September 9, 2014 Hi all, Mary is not improving with the new medications she is on. But we are told she won't improve. The idea of the medications is to slow the progression of the MS and Parkinson's. Perhaps it will take a bit more time and need a higher dosage. She goes back to Yale to see the neurologist there Friday. Wednesday is one year since Shan's passing. So hard to believe. I spoke to her brother last night. They are still in Memphis. Jackson's condition is critical. His fevers are going up and down. He is on very high doses of antibiotics. The shunts placed are not working so well the last couple days with drainage of fluids in his brain. He is very well medicated for seizures because he had two Saturday night. He is not awake but rarely when pain is great. And he cries. They are really just keeping him comfortable at this point. And they are spending many hours just holding their baby boy. What can I say? They need a true miracle. This is unimaginably heartbreaking for them. For our family, Shan was our family. So, even for Mary, this one year anniversary Wednesday is very painful. Not that Shan's brother and family are not family as well... It's just we didn't really know them well until she got so ill and passed. And certainly I cannot imagine their pain with Jackson. It's just all so sad. But I pray every night with Mary. She holds prayer very dear to her. It is very much a connection to our lost loved ones. We pray that God will surround Jackson with peace and comfort. Good night. Early day tomorrow. Long day today. God bless. Butch Thank you for the prayers for Jackson. Link to comment Share on other sites More sharing options...
enna Posted September 9, 2014 Report Share Posted September 9, 2014 I am sorry to hear about Mary's medications not helping her as they could. We'll wait for news after you visit the neurologist on Friday. Prayers continue for Jackson. I cannot believe that it will be one year since Shannon passed. She touched quite a few hearts. I stand with you as you and Mary pray together. Take care of yourself, Butch. Anne Link to comment Share on other sites More sharing options...
kayc Posted September 9, 2014 Report Share Posted September 9, 2014 Hi Butch, I am sorry to hear that Mary's medications are not working as hoped, I hope you get some better news soon. The one year mark can be really hard but often it's not as bad as we imagine it will be, at least that's some of our experience. I just had my mom's funeral yesterday, I posted a picture of all of us together on my thread (Loss of Parent). I keep praying for little Jackson and hope they can keep him pain free and comfortable. It has to be hard to keep working through all of this, but maybe it keeps your mind occupied on something else for a while too. I hope you get some rest tonight. Kay Link to comment Share on other sites More sharing options...
R.Everit55 Posted September 10, 2014 Author Report Share Posted September 10, 2014 Good news. Jackson is responding to antibiotics. His temps are much lower. When this infection clears more he will go into surgery to place a third shunt to help drain fluid and ease the pressure on his brain. He wakes and cannot see. Mommy and Daddy make sure he hears them. But at some point his brain tumors very well may take his hearing as well. He is but 28 months old. The fear is unimaginable. I pray God gives him more time. I pray though that he is given peace and comfort as well. NO CHILD should ever have to go through this nor a parent watch their baby suffer. I'm pretty sure at this point in the game, there will be no treatment for his ATRT. Only procedures to help give him gain more time and in that time, give him comfort. They have their five month old baby girl with them because she is still being nursed and is glued to Mommy. But she isn't allowed in PICU. There is kind staff that take her several hours out of each day. Jackson was signing the milk sign. He took sips from his sippy cup today. He was taught some signs before he was a year old. Anyway, it is fast approaching the 10th here. Mary and I are heavy hearted at it being a year since Shannon passed. Her family is too. But they are just trying to deal with Jackson and his comfort. I am taking tomorrow off so to be with Mary. The memories are tough. Even for Mary. I have to remind her of things. But she remembers a lot and hurts. Good night. Kay, God bless you. You must be beside yourself in grief for your Mom. I will pray for you tonight. Link to comment Share on other sites More sharing options...
kayc Posted September 10, 2014 Report Share Posted September 10, 2014 Butch, I'm having complicated grief, as are my sisters, but I'm getting through it. My mom was very mentally ill all her life and us kids suffered for it (abuse, mistreatment, inappropriate responses, etc.). But we all turned out well and we have each other. The last two years in the dementia care facility when my mom was finally getting treatment, she became very sweet and appreciative. I miss that person, I miss going to see her. But I'm glad at last her miserable life is over, because she had not been a happy person prior to treatment, and the last few months when she couldn't read or walk and was in pain, she longed to go be with Jesus. I told her often that daddy was waiting for her. Her memory slipped away a piece at a time, first she forgot my late husband, who had loved her so much, then she didn't remember what happened to daddy and why he wasn't there, then she thought her parents were still alive...it was hard to keep reminding her because then it was fresh to her. I'm glad baby Jackson knew some signs, that'll help him with communicating his needs. Poor little guy! Praise God for the antibiotics working! In a way you think maybe it would be easier for him if he wouldn't have to go through all this, but then you think what if that was my child? I would have a very hard time letting go or missing one day of his life! I can't imagine what this young couple is faced with. I've never seen one family suffer so much with so much calamity...Leo, Shannon, Ziggy (?), and now Jackson, and of course all Mary is going through. The one blessing they've had is good spouses to go through life with, and even when Shannon lost hers, she still had Mary. I'm glad you can be with Mary today, I hope you give her our love and know our prayers are with you always. Link to comment Share on other sites More sharing options...
R.Everit55 Posted September 10, 2014 Author Report Share Posted September 10, 2014 Unfortunately, both our family and Shannon's family have always gone through very tough battles with loss, depression, abuse, divorce, family fighting. But we all have our journeys and crosses to bear. Everyone and every family. Mary is having a very tough day. Won't eat. Won't drink. Just staring outside the window of the nursing home. I'm not pushing her. I know her memories of today and the time leading up are there in her head and her heart. If I push, it will only make things worse. So I left. I'm hoping they will get her to eat later. Or at least drink a healthy shake. I even brought Little Man in to her. She really didn't even want to see him. I'm so sorry about your most complicated grief Kay. We went through some of that with Mary's birth Mom. It's difficult I know. I'm taking time this afternoon to spend time with our grandsons when they get home from school. And thank God for their health, in light of little Jackson's very ill health. Link to comment Share on other sites More sharing options...
kayc Posted September 11, 2014 Report Share Posted September 11, 2014 I understand...my mom wasn't much interested in eating these last few months. I worried about her getting enough to eat, she didn't look like she weighed 70 lbs, although I'm sure it was less the last month. Poor Mary, this has to be tough on her. I'm glad you get to spend time with your grandsons, I don't have any yet but hope to in a couple of years. I'm glad you have Little Man with you too. Have a good night, Butch. Link to comment Share on other sites More sharing options...
R.Everit55 Posted September 11, 2014 Author Report Share Posted September 11, 2014 So the decision has been made. Jackson and his Mommy and Daddy and baby sister will be going back to CA to be home with their family where hospice will take over. He will be life flighted from Memphis to CA in the next couple days. And Daddy will be going with him. Mommy and baby sister will fly home the same day but only one parent can go with Jackson. Drs are not saying how much time he has left. But Hospice will keep him comfortable and their whole family will be there. God only knows how much time is left. Mary ate tonight, a small amount. I brought her something tempting from home. And our grandsons came with me to see her. She enjoyed that. Link to comment Share on other sites More sharing options...
kayc Posted September 11, 2014 Report Share Posted September 11, 2014 I'll pray for them to make it home safely. I'm glad Mary ate something and enjoyed her grandsons. They can sure be a delight in an otherwise sad time. Link to comment Share on other sites More sharing options...
mfh Posted September 11, 2014 Report Share Posted September 11, 2014 A sad flight for that family, Butch and for all of you. I am glad they will be home as that will feel more comforting (as if anything can comfort them right now). Glad Mary ate tonight and that she saw your grandsons. You are all in my heart....each day when I meditate. Link to comment Share on other sites More sharing options...
enna Posted September 11, 2014 Report Share Posted September 11, 2014 Thinking of everyone today, Butch. My heart aches for little Jackson and the family. They remain in my prayers. Amazing the comfort seeing grandchildren can do for the spirit. I guarantee if I were there cooking for you, Mary, you would enjoy some of the yummies I'd set before you. Thinking of you and know you have that inner strength to continue to get stronger. Anne Link to comment Share on other sites More sharing options...
MartyT Posted September 11, 2014 Report Share Posted September 11, 2014 Our thoughts and prayers continue for all of you, Butch, as we hold you gently in our hearts. ♥ Link to comment Share on other sites More sharing options...
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