Hello, I just read your message about your son having Hairy Cell

Posted by suebee @suebee, Jan 12, 2012

Hello, I just read your message about your son having Hairy Cell Leukemia. God Bless You! My heart goes out to you. Right now, I don’t know for sure what I’d do either. The chemo makes them so sick,…depending on the types of chemo. I know my father was diagnosed with Lung Cancer, Adenocarcinoma and his chemo just ran him down, he did not get vomiting sick, etc like a lot do…but he was so extremely exhausted…for days he could barely get from chair to chair. He died within 6 months from the time he was diagnosed, but he’d had it for a while before it ever got diagnosed. With a mentally challanged son, it would be difficult for you to have to make all the decisions for him. Pray about it. God will give you the right answers. You know your son better than anyone else. I also have a brother who is 40, will be 41 on Jan 21st. who was diagnosed with HAIRY CELL LEUKEMIA in November. From what they have told us, this is an extremely rare form of cancer and is the “slowest” form of cancer. Can go into remission for 10 years after a chemotherapy treatment, then if symptoms reoccur can do chemo again. My brother’s spleen ruptured or rather “exploded” per words of his physician. He almost died. This was “before” they even knew what he had. His platelets, WBC’s, RBC’s were all low. He ended up in a local hospital where they saw a “leak” of fluid on the xrays…but however, did not follow up on that and discharged him from the hospital. He was at home 2 days later and if my mother had not been there with him, he would have died. He began passing out. She panic’d, called me at work. I beat the ambulance to his home. He stopped breathing twice. Scared me right out of my mind! His BP was 50/20. He was going out. Finally the ambulance came, he stopped breathing, a cardiac rub was done, they got him in the ambulance, took him to our hospital where I work, did CT’s, etc, gave him blood, platelets, etc….He was extremely critical. I knew he wouldn’t live. They airlifted him to NCBH. Surgeon was waiting for him. Removed his spleen, The Dr. said if he had been 10 min later getting there, he would have died. He had 3 “milk jug gallons” of blood in his abdomen! He said he didn’t have to cut the spleen out, it just “scooped” it out with his hands. THANK GOD FOR THE WONDERFUL DOCTORS AND NURSES AND ALL THE OTHERS WHO HAD A HAND IN HIS HEALING PROCESS!. He has been f/u with his cancer doctor here. Just told us last week, he may have to begin some Chemo. Had his first shot of Neupogen to boost is immune system. He has been sick with all the “cruddy” stuff going around. My brother is 16 years younger than I. I am the oldest child. When he was born, he was like my baby. I spoiled him. He feels like my child as well as a baby brother. I thank God for him every day and for all he has done for us. I know he will take care of the situation. You will definitely be in my prayers and I will be checking back in with you to check on his progress. May God keep his healing hands of grace over you , him and all of your family! @betz2468

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Thank you for replying to my post on hairy cell leukemia and my handicapped son. It was much appreciated. I so hate to have to take him in for chemo – feel like I’m leading a lamb to the slaughter but to do nothing doesn’t seem right either. I love my boy! I want him here as long as possible but have great comfort in knowing that he will walk into heaven “no questions asked”. I couldn’t believe all you have been through in your cancer “walks”. I will add your brother to my prayer list for sure. I have a sister who is 14 years younger than myself so I know how you feel – they are much closer than a sibling for sure. I asked my son’s doctor about removing the spleen simply because I had read it on the Internet. He said unless there was a problem, that was kind of an old routine used that they thought helped with hairy cell leukemia. The problem with my Brent is that he can’t tell me if it hurts anywhere. His blood count in low now and I wonder how low the doctor will let it go before he gives him the chemo which will lower it more I know. My daughter is a nurse at the hospital in Grand Rapids and she said she has patients that have a “zero” white count. They have to wear face masks at all times. I know that my son wouldn’t tolerate a face mask. I plan to bring him home for the chemo as he lives in an AFC home. I am hopeful that he will be content here as he loves living with others who are like himself. However, if he is that fatigued he probably won’t much care where he is living. I do hope it doesn’t make him sick to his stomach. He had such a rough summer last year as they thought it was seizure meds that were causing the blood levels to drop. So they switched him to different meds which made him so sick he couldn’t get out of bed. He lived on Ensure as his stomach, throat and head hurt most of the summer. He is 6’3″ and dropped to 138# – skin and bones. He would look at me and say “Hurt Mom” and I could do nothing to help. Horrible!! He is now back on his old meds and you wouldn’t know anything was wrong with him. It just breaks my heart that he has to go through this too. I wish it could be me instead. I will continue to pray for your brother. Please do contact me again. I so appreciate the information you provided me. May God Richly bless you and your family!! Big Hugs!! betz


I do know what you mean, you really hate to do something that is going to make his life more miserable at least for a while off and on and yet, you don’t want to stand by and do nothing. I think with the Hairy Cell Leukemia, as they say, it’s very treatable and and go into remission for years and years. At least he would probably have a normal quality of life if the chemo is done the first time. I think it probably would be worth trying at least once and see how he does. Of course, like you said, he can’t tell you how bad he’s feeling, etc. You have a lot to deal with. I know my brother was really worried about seeing his daughter grow up. She is in 1st grade. According to what the cancer doctor told us is that he could do chemo, go into remission for ? 10 years or more, then keep doing that and there’s a good possibility that he would see her grown and beyond, etc. It’s just steps we’ll have to take as the situations arise. He is such a worrier. Worries over everything. He’s an extreme hard worker and works hard to keep everything in his life immaculate…he works for a Food chain on 3rd shift, has for many years, and details cars during the day….a work a holic!! Thank you for adding him to your prayer list. I really appreciate it. I will keep your son on ours and your family. Is he the only child you have? I am really worried about Johnny because it is already at the point that his spleen filled up with all of his platelets and exploded. I’m only wondering what is next, but sometimes, I think I worry too much, too. It’s really easy to do that, isn’t it? I’m sure they will do labs on Brent every few weeks, won’t they, to keep an eye on his counts, in case his spleen was to become damaged by it? I sure wouldn’t want what happened to my brother to happen to him. Of course, they overlooked his problem in the hospital. If they had followed up on that “leak” they saw on the CT, then it wouldn’t have gotten to the point it did and we almost lost him because of it. They should have done another CT before discharge…but according to his Cancer doctor, who was out of town at the time he was in the hospital in Boone, she said they DID NOT even mention to her that anyone even suspected a “leak” or she would have ordered other tests. He was admitted to the hospitalist on call and he did not f/u correctly. A GRAVE MISTAKE! On the other hand, THANK GOD we still have him. He’s a little depressed over the whole thing. When he found out he was gonna have to have the Neupogen shot and maybe start some chemotherapy, he told his wife that …..maybe it would have been better if he could have just died when all that took place, and he wouldn’t be causing all these medical bills and worry for everybody. I think she scolded him pretty good on that!!! But, like I told her, I’m sure that’s a normal reaction. I know I’d probably have those thoughts at some point, too…if it was me. That’s human nature., Gosh, 6’3″ and 138 lb. God love him. It’s so pittiful to just sit by and feel helpless in these cases. You must be a strong woman to have gone through what you have. I admire people like you. Please hang in there and know that my prayers and thoughts are with you every day. My brother, brother-in-law and nephew are all ministers. I will have them put him, you and your family on their prayer lists also. Hang in there 🙂 Love and hugs to you, too….feel my arms around you now, praying for God to heal your pain, stress, tears and hurt. 🙂

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