[cherylm]

Jack, I was wondering often lately how you and your wife were doing. I hadn’t seen any recent posts and was so concerned. It’s funny isn’t it how even though many of us who’ve posted here and have never actually met have feel so connected. You have always been such an unbelievable wealth of knowledge and inspiration for not giving up to so many of us. Since my dad died, I have to admit that I really don’t visit the board that often. I pop in from time to time to check on those of you who’ve I’ve shared experiences and connected with. I would really like it if you would keep in touch, email me directly. I know this is an aweful time. It’s been just about 8 months since I lost my dad and it is still such a struggle. I loved him so much. I mean it wih all my heart when I say if you need an ear or a shoulder or you just want to talk I’m just an email or phone call away. I’d like to offer my prayers but I’m not on the best of terms with any superior being these days! But you are in my heart and in my thoughts. It’s not going to be easy, I know. Just do your best…breathe in, breathe out. Find comfort in friends and family and memories of happier healthier days. Ghandi said “There are no goodbyes for us, Wherever you are, you will always be in my heart.” That is how I feel about my dad, remember it when you think about your wife. Each day, it becomes a truer and truer statement. Well, enough …. please Jack, keep in touch. Peace, Cheryl Mirro

[cherylm]

Hi Lynn,

I agree 100% with Eve. Keep your own set of records and stay on top of the info out there. There is alot if you look in the right places. Knowlegde is power.

I too am here if you have any questions or just want to vent! Feel free to email. Best of luck to you.

Cheryl

[cherylm]

Hi Bety,

I wanted to pass along my sincerest sympathy with the loss of Ed. Having recently lost my dad to this stupid disease I know how aweful it is. I’m glad you have your children there. Rigth now, my son and I are staying with my mom and I know it is a great comfort for her to have us there. I hope you find the same from your family. Sending you a hug and prayers for peace in the days to come.

Cheryl

[cherylm]

I’ve been so worried for you Jack. You guys have been thru so so much, too. I have to admit I had a hard time praying for anything after my dad, but I have begun praying again now for you and your wife. Do you think your wife would like to receive cards to let her know we are thinking about her and praying for her?? Cheryl

[cherylm]

Hi,

I’m with Sandi, don’t ever give in or give up on your husband. When my dad din’t have much left, we too spent evry minute with him. We shared our feelings for each other and reminiced about the family times we shared. We were always one of those strange familes who actually liked each other and enjoyed being together as often as we could. My dad died knowing how much he was loved and we know how much he loved us. Just savour each and every minute of every day and never let anything go unspoken. Prayers to you both.

Cheryl Mirro

[cherylm]

Hi Jack,

My dad did have the same side effect with the weakness and getting out of breath. I always felt part of it was his copd but the 0 wbc didn’t help. Before he got the infection he was starting to get stronger though. As far as coming home from the hospital, he did come home after the first treatment but when his counts started going down they admitted him. He was going to come home again after the second but that;s when he got the infection. I hope your wife is doing better. Please let me know if I can do anything.

[cherylm]

My dad had the same issues with the 0 whites. They was why he was hospitalized at NYP. I’ll tell you though, the clofarabine did a number on the blasts. Let me know after she has the bmb. Is her treatment oral or iv??

Cheryl

[cherylm]

Thanks to everyone for the kind words and prayers sent to my family. I really want to try to stay active on the boards. We’ve been thru a lot for sure and if there is anything I can do to help out anyone else I’m more than happy to do it.

Jack, Please keep me posted on your wife. Where did you say she is getting her clofarabine treatment??

Cheryl

[cherylm]

Hi Warren,

My dad was one of the first being treated by Dr. Feldman at NYP with clorarabine. We really liked Dr. Feldman and he knew his stuff. He went out of his way to work with some doctors at Anderson on the clofarabine trial. The clofarabine was really a good drug and did a number on my dad’s blast count. My dad unfortuantely had some other issues and he passed away on Feb 19th. But our experience at NYP was very good and I have alot of faith in Dr. Feldman. If there is any info you need or anything you think I can help you with let me know. I spent many many many days and weekends in the city with my dad so I have alot of info. Please contact me if you need anything at all. Cheryl

[cherylm]

Hi all,

For those of you who haven’t read other posts, my dad passed away on Feb 19th. He had just finised his second round of clofarabine and was pretty much in remission. We were waiting for his counts to come back up. The doc figured another 2 weeks and he’d be home. Unfortunately he got an infection and developed complications with his heart and kidney (he only had one). From the time we got the good news until he died it was a mere 3 days. He know what was happening and my brother, my mom and myself didn’t leave his side for a minute. It was the longest and shortest 72 hours of my life. We got to share a our feelings and to thank him for being such a fighter and a great dad and husband. His last words were that he would love us forever. We all held him as he drew his last breath. It was the hardest thing I’ve ever been through. I’m so grateful that my family shares such a closeness, that there were no regrets and nothing left unspoken. I don’t know that I’ll be back on the boards very much but I want you all to know that I’ll keep you in my prayers. Make sure you tell you family how much you love them every day! Feel free to email me if you have any questions on the clofarabine treatment my dad had. Peace to all…Cheryl

[cherylm]

Hi Roseanneinia, I’m so sorry for your loss. I lost my dad to mds on Feb 19th, he was 70. It took me until pretty much today to even look at the boards again and posting is not easy. Every day is a struggle. I’ll keep yoyu in my prayers. Cheryl

[cherylm]

I know I’ve not been around since I lost my dad, but it is just been hard to read about everyone. Jack, please keep me posted on your wife. If you have any questions on the clofarabine please email me. My dad did have some swelling but the clofarabine did a job on the blasts! I’ll keep you and your family in my prayers. Cheryl

[cherylm]

My dad really had no side effects from the Vidaza. He did get sore from all the pokes though and decided to go with the cath. According to him it was the best thing to do. Now everything gotes through the cath and he’s not a pin cusion anymore! Unfortunatley the vidaza didn’t work for us. He was on exjade, too. Same issues as mentioned in other posts. Way too harsh for my dad’s kidney (he only has one). The doctors at NY Presbyterian took him off it. Kidney function is now pretty much back to normal. Good luck to you! I know vidaza works for a lot of people.
Cheryl

[cherylm]

Hi all,

Back from another weekend with my dad at Presbyterian. So far only good reports. We are very hopeful. Follow up bmb is scheduled for early this week so I will let everyone know.

Jas174…emial me directly with any questions or you can call if you want to discuss.

Cheryl

[cherylm]

Hi All,

Just wanted to post a quick update on the Clofarabine trial my dad started on Jan 7th. For the most part everything went great. There were issues with fluid retention and kidney counts (he only hs one) and the ususal low blood and platelets. The first round ended Jan 11th and they did a bmb yesterday. The preliminary results indicate a big drop in blast count; from 25 to 6. Doctors are going to do another bmb early next week to see how things look then decide how to procede. We’re still waiting to see it his counts start to come back up. In the meantime we continue with blood and platelets…..Cheryl

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