Members The Bear Posted May 25, 2009 Members Share Posted May 25, 2009 So this week....After 4 1/2 more days in the hospital Dustin's Dr. decided it would be good for the kid to spend his Memorial Day weekend out and about. He was scheduled for IV antibiotics on Tuesday and port installation Thursday followed by more IV meds.Boy came home with me on Friday to meet w his brother and sister as well as my folks who came up from VA to be with us. Friday through Saturday seemed ok with Dustin spending most of his time in bed with a couple of instances of him not being able to keep down food.Sat night he got worse, having a hard time breathing and having some cramping. I let him call the shots and only called the Dr. when he asked. Ended up at ER then ped-ICU for the night and part of Sunday then up to the transplant unit again. That it where he is now. His pulse/oxygen levels have stabilized now but he is still on oxygen. Dustin's stomach issues seem to be clearing up a little but he did loose some breakfast this AM. Tomorrow he gets more of the IV meds that will hopefully knock out this MAC or at least it's more obnoxious symptoms. He is scheduled to have 3 IV infusions of these antibiotics a week for 2 months.My mom is staying in the hospital tonight so I can get some sleep. Yeah right, like I sleep.It almost seems better when he is in the hospital because I know they can take care of him better than I can even when I hover over him at home. {censored}ty feeling folks let me tell ya.Have not played my guitars in weeks. Kev, I'm so sorry.I just feel so bad.You guys' have been going through absolute hell.He will be ok agin and back kickin' it out soon. Prayers sent. Link to comment Share on other sites More sharing options...
Members 72xmulch Posted May 26, 2009 Members Share Posted May 26, 2009 he might die soon. dont hold anything back. worrying never helps remember to breath. im thinking of you guys./ Link to comment Share on other sites More sharing options...
Members DRPool Posted May 26, 2009 Members Share Posted May 26, 2009 Wow, I'm so sorry to hear this. Continuing to pray, just wish there were more that could be done to help you out there. Link to comment Share on other sites More sharing options...
Members Kevman Posted May 26, 2009 Author Members Share Posted May 26, 2009 he might die soon. dont hold anything back. worrying never helps remember to breath. im thinking of you guys./ Wow. I know you probably mean well with your advice but I really could not disagree with you more ardently. Things are tough and Dustin's situation most certainly sucks I have heard NOTHING from his doctors that would paint such a grim picture. They are generally optimistic if not a little harried by the multitude of symptoms but never anything approaching what you suggest. Any of us may die soon, it's one car accident away from any of us. While Dustin is fighting a pretty nasty infection and battling cancer he is not battling anything that the doctors don't have experience with and a winning track record with treating. Dustin's cancer is and has been treated and did not require chemo this go around. We will know results of these treatments next Monday. This MAC or tuberculosis type of infection used to be quite prevalent in immuno suppressed or compromised patients but it is rare now due to medical science singling it out and treating it. All of the problems Dustin is having now are due to his compromised immune system which is the result of a successful bone marrow transplant 1 year ago. The cancer that the BMT got rid of is still gone. Remission. That was the scariest disease and it's still gone. While I appreciate the words of encouragement I could do without doom and gloom. It's difficult enough to get through this trial without thinking about worst case scenarios. Please know that I am all too familiar with that scenario but I will begin looking at that when the Doctors tell me I should. Link to comment Share on other sites More sharing options...
Members Laura99 Posted May 26, 2009 Members Share Posted May 26, 2009 Kev, this is the first time I looked at this thread, and I feel so bad. I can not imagine what it must be like for you, your Family and Dustin to have to go through this. My prayers will be with you and hopefully Dustin can make a full recovery. Link to comment Share on other sites More sharing options...
Members Shamdog Posted May 26, 2009 Members Share Posted May 26, 2009 Kev - I saw that post and thought about saying something, but didn't want to start a flame war in your thread. Only positive mojo here. As for the weekend, Deanna and the girls were at Disney, so it was just John, David, and me. You should have come over for a beer. I spent the weekend silling amps on CL. Maybe next time. Link to comment Share on other sites More sharing options...
Members BitPlyr Posted May 26, 2009 Members Share Posted May 26, 2009 I do not know you personally but as a mother of four myself I cannot imagine how your family is getting through all this. Just want to let you know that you and your entire family are in my prayers. I hope and believe things will improve soon. Link to comment Share on other sites More sharing options...
Members The Bear Posted May 27, 2009 Members Share Posted May 27, 2009 Hey Kevman and Dustin best wishes on the new treatments. I hope he is well soon. My wife Judy has really taken a turn for the worse. She has been fighting cancer, Breast, since 2002. Her cancer returned and metastasized in 2996. We decided on home hospice. We decided to forgo any further treatment. Her cancer is spreading everday and the end will come soon. May it be a peaceful end. She has really fought the good fight. I love you BABY.Brent gt5litre GT, I'm so sorry for you, your wife and family.I pray that your wife will go Peacefully and that she'll be with her loved ones she lost once again.I almost lost my wife around the holidays and it was a horrifying experience. I applaud your wifes' courage as well as yours.I will pray for you both. Link to comment Share on other sites More sharing options...
Members randy_terrell Posted May 30, 2009 Members Share Posted May 30, 2009 Ive seen people beat this stuff,and Ive been in the medical field a long time.Ive also been a musician for a long time.Speaking for musicians everywhere,we're all pulling for you Brother. Link to comment Share on other sites More sharing options...
Members Bizze Posted May 30, 2009 Members Share Posted May 30, 2009 I send your son all the mojo I can spare right now.. I hope there are some good results monday.. Link to comment Share on other sites More sharing options...
Members gt5litre Posted May 31, 2009 Members Share Posted May 31, 2009 Good luck Dustin, to Kevman and to your entire family. Judy has entered the Hospice phase, choosing to be at home. She seems to be in the final week or weeks of life. Most of her time is spent sleeping; withdrawing from this world to prepare for the next. I surely do not believe in a hell, not so sure that their is a heaven, but I hope there is for everyone. I do believe in God and think this live may be our shot. She has fought hard to stay in this life; she did this despite being a lifelong major depressive who has often considered suicide. She may still have a plan to have her final exit on her own terms. Because of my moral beliefs I told her I could not be a party to that end, but I also believe that every person has the "right to die" . Brent Link to comment Share on other sites More sharing options...
Members The Bear Posted May 31, 2009 Members Share Posted May 31, 2009 Good luck Dustin, to Kevman and to your entire family. Judy has entered the Hospice phase, choosing to be at home. She seems to be in the final week or weeks of life. Most of her time is spent sleeping; withdrawing from this world to prepare for the next. I surely do not believe in a hell, not so sure that their is a heaven, but I hope there is for everyone. I do believe in God and think this live may be our shot. She has fought hard to stay in this life; she did this despite being a lifelong major depressive who has often considered suicide. She may still have a plan to have her final exit on her own terms. Because of my moral beliefs I told her I could not be a party to that end, but I also believe that every person has the "right to die" .Brent I'll pray for both of you.. I believe there is another place we go.I believe this place is full of happiness, family, friends, pets and most of all good health.Both physically and mentally. Be strong. Link to comment Share on other sites More sharing options...
Members seven58 Posted May 31, 2009 Members Share Posted May 31, 2009 Good luck Dustin, to Kevman and to your entire family. Judy has entered the Hospice phase, choosing to be at home. She seems to be in the final week or weeks of life. Most of her time is spent sleeping; withdrawing from this world to prepare for the next. I surely do not believe in a hell, not so sure that their is a heaven, but I hope there is for everyone. I do believe in God and think this live may be our shot. She has fought hard to stay in this life; she did this despite being a lifelong major depressive who has often considered suicide. She may still have a plan to have her final exit on her own terms. Because of my moral beliefs I told her I could not be a party to that end, but I also believe that every person has the "right to die" .Brent So sorry for what you are going through. Much mojo. Link to comment Share on other sites More sharing options...
Members cbh5150 Posted June 1, 2009 Members Share Posted June 1, 2009 Brent, I am so sorry to hear about your wife. My wife just went through the same with her mother and stepfather in the last two years. I will keep you both in my thoughts. Link to comment Share on other sites More sharing options...
Members gt5litre Posted June 7, 2009 Members Share Posted June 7, 2009 I just wanted to let you all know that Judy passed away today. Thanks for all your prayers and kind words in the past. Brentgt5litre Link to comment Share on other sites More sharing options...
Members donsimon76 Posted June 8, 2009 Members Share Posted June 8, 2009 I just wanted to let you all know that Judy passed away today. Thanks for all your prayers and kind words in the past.Brentgt5litre You have me and my family's dearest sympathies. We will keep you in our prayers. Link to comment Share on other sites More sharing options...
Members ckdoublenecks Posted June 8, 2009 Members Share Posted June 8, 2009 Our deepest sympathies, Brent Link to comment Share on other sites More sharing options...
Members Shamdog Posted June 8, 2009 Members Share Posted June 8, 2009 Brent - So sorry to hear that. I know it's never easy, but Judy is at peace now. Hopefully you'll find some, too. Link to comment Share on other sites More sharing options...
Members Bert-O-325 Posted June 8, 2009 Members Share Posted June 8, 2009 I just wanted to let you all know that Judy passed away today. Thanks for all your prayers and kind words in the past.Brentgt5litre Wow. My sympathies to you and yours. I lost my Mother a few years ago. Its very hard. Remember her. Know that she left behind little bits of her in you and others she knew and cared for - in all the little memories, all the little sayings, all the little things in you that changed because you knew her. Know and carry those things proudly. Don't be afraid to talk about her (for fear of the emotion it will bring). KNOW THIS: for a while, thinking of her may bring sadness - this is normal - you must ride through it, not fight it, or deny it - in time you WILL be able to think of her, speak of her, remember her - and smile because you experienced her. Link to comment Share on other sites More sharing options...
Members Les Paul Lover Posted June 10, 2009 Members Share Posted June 10, 2009 I'm so sorry to hear that Brent. As you know, life isn't always fair. I can't begin to imagine how difficult it must be for you right now, but would like to tell you that even though she isn't here anymore, she will never be too far away from you. How cliche, but people do stay in our hearts. I still speak to my mom every now and again, and she's been gone 21 years. Do take care of yourself now. Antoine. Link to comment Share on other sites More sharing options...
Members The Bear Posted June 10, 2009 Members Share Posted June 10, 2009 I just wanted to let you all know that Judy passed away today. Thanks for all your prayers and kind words in the past.Brentgt5litre Brent, I'm so sorry for your loss.My condolences. Link to comment Share on other sites More sharing options...
Members Kevman Posted June 11, 2009 Author Members Share Posted June 11, 2009 Brent, God bless you. I know you are going through allot right now but, you and especially Judy have been going through allot for a long time. I am sad to hear about her passing but not so when I think that she is done hurting. I offer my sympathies and prayers to you. ---------------------------------------------------------------- I am going to put my update here in this post too. Hopefully the news will bring some positive energy. Last Monday (the 1st) Dustin got to go home! The CT scan they had taken the previous Sunday showed a 50% reduction in the size of the lymphoma masses throughout his lungs and chest! Hell Yeah! The MAC is something else..He is struggling to not loose weight still. After several days of IV nutrients they had taken him off and started to make him eat. The good news is that now he CAN eat without having it all come up. He just is not very hungry. Now at home with a new port installed in his chest he is having a home health care nurse come by and access the port 3 times a week to infuse more antibiotic to combat the MAC. If needed they can administer TPN (iv nutrients) as well. Hopefully they wont need to. His visit to the Dr. Monday shows that he is looking healthier and that the current course of treatment is being effective. He did loose a couple of pounds back down to 138 but they are hoping that his weight issue will turn around soon. So there you have it. Dustin is home and doing better. Cancer is taking the advice of many here and f-ing off. Peace out brothers and sisters. Link to comment Share on other sites More sharing options...
Members Shamdog Posted June 11, 2009 Members Share Posted June 11, 2009 Excellent News!!! Link to comment Share on other sites More sharing options...
Members DRPool Posted June 12, 2009 Members Share Posted June 12, 2009 Hey Kevman, tried to PM you but the inbox is full. Link to comment Share on other sites More sharing options...
Members alloutoftrust Posted June 12, 2009 Members Share Posted June 12, 2009 Brent, My dearest sympathies. I feel for you. I am going through the same with my mom at the moment. Right now we are planning a big family gathering for what is to be her last birthday. As she is in the hospice stage as well. My condolences and prayers go out to you. Mike Link to comment Share on other sites More sharing options...
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