My Jackie

Recently lost my daughter Jackie, 25 yrs old on April 28, 2009, to leukemia, AML. I am hurting so much and find it hard to find the strength to keep going. It just aches so bad in my heart and in my gut. She was such a beautiful, courageous, determined, and loving person to her family and to so many friends. I sometimes don't know how I will get through this. It has been 4 months and people don't call anymore and life goes on and I feel like I'm stuck and people don't know how hard this is and they just don't understand. Everything has changed. I'm not working right now because I'm waiting for the place where I worked to get rebuilt due to a fire, but I know others think I should get some work till they open again which will probably be end of November this year. I've applied at several different places, almost 26 or so. Nothing as yet, but then I'd have to quit because I want to be with all my friends and customers that helped me through this year, financially, spiritually, and emotionally. I really don't want to start over with new people and a new job, but we do need the money, my husband understands completely. We live with my Dad right now because of the expenses over the past year with my daughter and due to me not being employed. Its hard in everyway, my jackie, my home, and my work. The truth is, I feel guilty for waiting for my job where I'm comfortable being. Though I don't know if I could do anything somewhere new right now. I have been caring for my granddaughter 2 or 3 days a week since May, which has helped me get up and has been my survival each day, she lifts me up and keeps me going. I help my elderly dad with dinner and taking him to the senior center or to the store or appointments, cooking for him and anything I can do. I have kept very busy over the summer and still will be. Just some people I feel don't understand how I feel, and have commented on how I should be working until the place where i worked opens again. I feel so much stress right now, and some days I don't want to go on, but I know I must try to find the strength and pray each day for it. My sister and brother in law own this 2 family and we agreed I would pay a couple hundred dollars a month starting in Oct, however, we thought I'd be working by now, we told them we don't have the money right now, so they agreed to January and will then pay $400 a month for 3 months and then $300 after that. My Dad and (mom-she passed away a month prior to my daughter's diagnosis) live on the first floor for over 10 years and my Dad pays $700 a month to my sister as always and will continue too. We will help pay also, 1/2 of Dad's utilities of course. I need feedback for my guilt about all of this and what I should be doing and what's fair, and to anyone who has lost their daughter/child and how to cope each day. My sister has been there for me every step of the way through my daughter's illness and passing. We did have an argument and it was awful, I felt like I was living with my Dad, which helped her too, but I know I can't live rent free and I would never do that anyway. I always said I would pay double when I'm working, words were said and it hurt. She knows what we have been through the past several years, and she wants us to get ahead in life by staying here .. Living here is hard sometimes, away from my town, my friends, and caring for Dad as well and no privacy, only to a small bedroom for my husband and I, but I know I should also counts my blessings and be grateful, and my sister I think doesn't think I am, but I am so grateful, but the same time I feel so much emptiness inside and dark without my daughter, and sometimes its seems too painful, and with the added stress of home and money, job. I just needed some feedback, I do go to compassionate friends and I see a counselor every other week, I do talk to people, but sometimes, nothing helps..

By Finny
Posted September 19, 2009 at 9:35 am
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I'm so sorry for your losses! I'm not a professional, but I have lost a child many years ago. My husband and I seem to be the only ones to remember the date..but thats o.k., because no one else in the family experienced the same pain that we did. I had other children to take care of, a house, a yard a husband..but I felt like I was walking around in a daze. I remember praying for peace and comfort... sometimes for hours at a time. And even though I was surrounded by loved ones my arms felt very empty. Things that helped were the outdoors( I packed up the kids and went anywhere) and throwing myself into helping others(baked cookies, called a lonely person, sent a card to someone) their responses always seem to bless me. The best advice I got was that it was o.k. to be mad, sad, whatever the feeling of the day was....you've been through a lot!! Hang in there!

By Kerry_1
Posted September 19, 2009 at 3:08 pm
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Hi,

I'm so sorry for your loss! I too lost my precious baby to AML last year. It is a struggle every day and I still feel very numb most fo the time. I'm sorry I can't write long today, but i will check back on this site and see if you have responded. I would love to chat with you more about your experiences etc. In the meantime, I wish you so much peace and comfort as you face these next weeks, months and years. Your friend, Kerry

By jackiespellman
Posted September 19, 2009 at 11:27 pm
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Thank you all for your comfort and caring responses, and I am trying each day to pray for strength as well. I don't think I've accepted life the way it is right now, and I must keep trying to accept things as they are for today, but as my husband tells me always, its just for today. I so appreciate the support,

laur

By Kerry_1
Posted September 20, 2009 at 7:58 pm
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Hi, just popping in to this site. Did your daughter have a bone marrow transplant? How long from diagnosis until she passed? I'm so curious as to what happens with others with AML. Jess only had it for 9 months and didn't have a transplant. Her other 2 sisters weren't a match. I miss her so desperately! I'm having such a hard time. Not always, some times are harder than others. I still can't believe she is gone. I think I am still very much in shock. Take care and if you feel like chatting, i'd love to chat with you and share our stories. Hugs, Kerry

By jackiespellman
Posted September 20, 2009 at 11:00 pm
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Hi Kerry,
My Jackie did have a bone marrow tranplant in August 2008, she went over the 100 days you have to wait and seemed to be doing well, however, she had a bone marrow aspiration and they found she had relasped, therefore, we were devasted, and it was so very hard, but then we went forward and had different types of chemo and had her taken new clinical trials and were again on our way to going forward to do another bone marrow transplant. However, then she developed pneumonia in April of 2009 and preceased to get worse, they tried everything, and we were both worried about her relapsing because we couldn't give her chemo due to her being so sick with pneumonia, so we needed to take care of this, but she got worse and she was put on oxygen through her nose, then an oxygen mask, then a bypap machine, she just could not get enough oxygen and the all the antibiotics were not working as we all hoped. She finally had something go on in her head( the return of leukemia to her brain, the fungel pneumia going to her brain, or maybe a stroke), not sure really, that caused her to not feel on her right side of her body, then she wasn't responding to us, all this happened within a couple days, she developed seizures, and then finally they incubated her, until we decided to stop everything because they didn't believe she would recover, they gave her zero chance to recover from this. It was the worse few days of my life. I still now while writing this wonder if I should of told them to keep trying, get the mri that would show what happening(however, because of her condition, they wouldn't be able to do anything) but I still question maybe, maybe if we get going, maybe she would recovered from pneumonia, maybe she would get back the feeling in her right side, maybe they would be able to do the bone marrow transplant again. She hadn't had chemo for on 64 days or so, this is a very long time, and we don't know even if she had relapsed because it didn't matter if she had or hadn't at that point, why check if they couldn't treat her anyway until she recoved from the pneumonia. Near the end of her last couple months, she had other issues she did seem to recover from, she had menigitis, and her head was in so much pain, she was on many pain meds, in February she had some type of infection where they thought she would need her appendix removed, very dangerous when getting plalets and blood everyday, and she didn't have any ammune system, her blood levels were so very low. She finally was coughing up alot of blood due to the pneumonia, she was vomiting , had diahrea, it was heartbreaking but I didn't or couldn't think about it then, you just did what she needed and kept her calm. I prayed everyday, and had faith that she would pull through all this. She was so strong and had so much courage. I really couldn't believe anything could take her from us, not Jackie. Though finally, being numb as ever I guess, we stopped the machines and she finally took her last breath after 20 minutes or so. Nothing can ever stop of ache of that moment.
Jackie's sister was not a match, however, she was on a donor's list and they found a match for the first bone marrow transplant, and they found a donor for the second one as well, however, that was not to be, we were so close, but again, there were no guarantees this would take this time either, but we hoped. The second transplant we knew that the percentages were so much lower than the first transplant, the odds were not good, but I really thought in my heart we just could not lose her, and she could do this, and she fought a very long hard fight, she never gave up to the end, the only thing that stopped her was whatever happened to cause her to stop responding suddenly. God , when I think of how she just kept going, she amazed me, I was in somewhat of denial I think, even when the doctor said she had a zero chance. I just couldn't believe it. Today, as you have said about your daughter, I still can't, and its been over 4 months. She passed away April 28th this year.
Please tell me how old your daughter was and what was her name. You can tell me what she went through and what you both went through. Jackie had a very serious AML I guess, FLT3 , which is one the worst I'm told, there are so many types of AML.
I am so so sorry for your loss and I know of course the pain you are going through and how hard this is. When did she pass away? If you ever want to read about her, I did a journal on caringbridge. Its www.caringbridge.com, and type in (jackiespellman). I would love to hear more about your daughter.. hope to hear from you soon.
hugs back
laurie

By Kerry_1
Posted September 22, 2009 at 11:35 am
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Hi Laurie,
Thank you so much for your e-mail. I think it is so important for us to share our stories with anyone and everyone because I truly believe it helps with our grief process as well as our road to some peace. My daughters name is Jess and she was 14 when she died on March 8, 2008. I think she looks a bit like Jackie with her hat on and the same precious smile! Jess was diagnosed in June 07 (just before her grade 8 grad). She presented with strep throat and after a couple of rounds of antibiotics we took her to the hospital where they did bloodwork and discovered leukemia. SHOCK!! After first round of chemo Jess was in remission and showed no signs of leukemia whatsoever. We were relieved! They then tested us and my other girls and no one was a match. They continued with chemo until November 11, 2008 "just to be sure" . In the meantime, so many infections. She also had a yeast infection that they treated her with Amphoterazine (nasty drug that almost killed her!) We were finally discharged in December after spending most of the time in the hospital. Jess had lost 65 pounds from diagnosis until we were finally away from the chemo, infections etc. So much throwing up and not eating because of nausea and lack of appetite. In January she went back to school and even played hockey on Feb. 10, 08. We went back to clinic on Feb 12 for routine bloodwork and found out she had relapsed. She was then put on a list for bone marrow transplant (non related), but had many complications including pneumonia, and finally a stroke also. Very confused the last 24 hours. It broke my heart and still does so desperately but I as i read your story I recognize in us the same as you that we did what we had to do and somehow march on for them. Jess died very peacefully at 1:00 on March 8, 2008. I still can't believe it and I think i am still suffering from a lot of post traumatic stress. I am working part time as an educational assistant in a kindergarten class. It's good because the children and sweet and innocent. I believe that Jess is with us every day. I have had many signs that she is present. Whether people believe me or think i'm crazy, i don't care, it makes me get up in the morning. We talk about Jessie constantly and miss her like crazy. I know we'll be reunited some day and have to continue to march on until our time. I'm so glad we have connnected. I have been searching for so long for someone to share their story with me of a loved one having AML. I, like you, go to Bereaved Families (welive in Canada and that is what our association is called). It is very helpful and I have met many beautiful people who have lost children but not to AML specifically. I'm not sure what subtype Jess had, but i will find out and let you know. Wishing you much peace and comfort as you continue your journey. Look forward to chatting with you soon!
Hugs,
Kerry

By jackiespellman
Posted September 22, 2009 at 1:24 pm
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Kerry,
You are the first I have also spoken where their child had AML ,and from the sounds of it, your daughter's story is so simular to Jackie's. Your daughter also looks simular to Jackie as well. Jackie used to have long medium blood hair. She played soccer, and played in high school and college.
I would never think of you crazy that you feel your daughter around you at all and have many signs of from her. I know also that we will reunite with our daughters one day. I'm not working yet, the place where I worked had a fire previous to jackie's passing and they are still rebuilding, so for now, I care for my granddaughter who is 2 yrs old. Jackie was 25 yrs old, but I have another daughter Mandy who is 28 yrs old and she has 2 children, Isabella, who is 2 yrs old and Frankie who is 7 yrs. old. I also have a stepdaughter Kristy who had my other grandson who is 7, Jalen and a stepson Bobby who will be expecting his first child in April 2010. The grandchildren help me alot and keep me busy. Bella I watch for my daughter 2 or 3 times a week.
Anyway, it is so nice to be able to speak with someone who has been through what I have been through with AML, its a long hard road. Jess being only 14 yrs old is so heartbreaking, I'm so sorry, I do how difficult it is and I believe also about the post traumatic stress, its so difficult, recalling flashbacks from how they looked, what they went through and how they suffered. I'm really glad we connnected, we talk to you soon again.

Hugs
Laur

By Kerry_1
Posted September 22, 2009 at 9:10 pm
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Hey Laurie,
I too think they look alike! Jess played rep baseball, she pitched all 7 innings and had 12 strike outs 3 weeks before she was diagnosed. She also played hockey. Funny that they were both sports girls! :) Is Jackie wearing a leukemia bracelet? Jess always wore one and I wear one al the time. I'm so glad you and I have connected! I hope our girls have also met and are enjoying kicking a ball around and smiling at us! Where do you live? We are in Kingston Ontario. I'm glad you have your grandchildren to keep you busy during the day. I know it doesn't change anything but sometimes a bit of a distraction is a welcome reprieve. Do you journal? I'm not good at it, but tend to read alot right now. When Jess first died i wondered around Chapters bookstore convinced htat I would find her their. Weird what we do, but sometimes we have to follow our hearts. I finally came across a book called Conversations with the Children of Now. It's about a pyschologist who interviews children with varying issues. They all claim that they have had past lives and some even go into where they came from. Kind of cool as they are children and to listen to their recounts.
Jess used to have long brown wavy hair. I remember playing with it one night just before she was diagnosed and talking to her about what we were going to do with it for her grad. It breaks my heart to see her grad pics as she was so sick (fever of 104). The dr. said she could go and have pics taken with her friends as they were outside (she was neutropenic at the time). Even to use the terms again is heartbreaking!! It's good to talk to you, thank you!! Are you married? I am with my husband, Jessie's Dad and we talk alot about Jess but it's still so good to talk to others. Hope you have a good night. Will chat soon!
Hugs,
Kerry

By Kerry_1
Posted September 27, 2009 at 9:57 am
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Hi Laurie,

Just popping in to see how you are doing? Raining here today :( I'm feeling draggy and down. Hope you are OK! Chat soon.
Kerry

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