About momminus1 (mom minus one)
Welcome to my blog, momminus1 (mom minus one). I am a mother of three beautiful girls, Kayla, Allison, and Ashley. However, my family was forever changed when my oldest daughter, Kayla, was diagnosed with acute myeloid leukemia – AML on July 3, 2010. After a short 81 days of harsh chemotherapy treatments, hair loss, rare and painful skin disorders, horrible stomach infections, weakness, loss of appetite, depression, anxiety and fear, Kayla passed away on September 22, 2010. She was only 17-years-old and I miss her immensely. I don’t want to let her memory slip away and I refuse to let her ever to be forgotten. I’ve learned that writing is my best form of grief therapy. This blog has allowed me to continue to write about our journey through life after losing my daughter to cancer. And, through my blog, my hope is that I can help another mom that might have recently lost a child to cancer. She might be thinking, “Is there anyone out there that understands what I’m going through?” I understand. I am grieving. I am in pain. I have a big piece of my heart that is now gone. And, you are not alone.
***If you are a bereaved mother of a child who passed away from any type of cancer and are seeking an online support group for mother’s who’ve experienced the same type of loss, please contact me and I will forward you an invitation to join an incredible group of wonderful women that have provided me with a tremendous amount of comfort and support. I know they will be there for you, as well.***
Thank you for reading!!
Mom Minus 1 
You and your family continue to be in my thoughts and prayers. What a beautiful way to honor Kayla and your family.
Sincerely,
Cindy Zehnder, L.C.S.W.
Hello there. My name is Leanne and my Aunt is Caroline. I have been reading your posts and am very saddend for your loss. Kayla was a beautiful young woman, and I can tell you very much adored her. I have not walked this road your on with a child. I do have 2 of my own, so the thought of what you have endured and are experincing wrenches my heart and has moved me to tears. My father-in-law passed away from melenoma 11 days after my daughter was born. She was the first granchild to be born on both sides, and a girl at that! My husband was an only child so there was all the more cause for celebration. I still can’t wrap my head around why my husband had to welcome his child into the world and let go of his hero all at the same time. It will be 8 years in July since his passing, and I still cry crocodile tears. I can’t explain all of the I didn’t knows, but maybe if we knew ahead of time we wouldn’t have taken the plunge to be a mom in the first place. Truthfully if I knew how hard it would be to have a mother in law in the beginning who made me want to pluck my eyeballs out with tweezers…I might have rethought walking down the aisle. Or maybe if I knew the events that would have surrounded the birth of my first child I would have waited a while longer. This I do know…it still hurts, and I still cry. Not just over the passing of him, but so many other things in my life that have ended. Whether it is other friends who have died, or those things I have had to let go of for other reasons. Letting go stinks…but there has to be beauty in it somewhere or I would die from hopelessness. Maybe none of this makes sense being I am a total stranger and I can’t connect what you are really walking through, other than I know how to cry. I know the pain when I’ve cried and thought my brain would explode from it. I find it a miracle that somehow after I manage to pull myself up off the floor, I can move forward again. I pray you will continue to write.
Thank you for enduring my ramblings.
Leanne
I understand. I just lost my daughter Emily on Feb 13…just last month. She was my only child. She was 12 years old and had Hodgkins lymphoma. We are all devastated as a family. I’m not married and Emily’s dad was not a part of her life. I deal with this alone most of the time as most people truly don’t understand what I’m going through.
Please email me 🙂
Monica
Hello. I just stumbled on your blog and would love to chat. We lost our 9-year-old daughter to AML on March 26, just six days after she was diagnosed. We are struggling to say the least. Please email me if you have a chance.
Hi,
Terrible to be a part of this group, I understand, I feel the same pain, we just lost our beautiful daughter Alexa Marie on Dec. 3, 2011, she was just 13 months old, she battled Neuroblastoma for 8 months of her short life here with us. She is forever my hero, my angel and my inspiration. To endure the death of your child is unbearable, but to have to hold onto memories of their constant suffering when you could do nothing to stop it is the most excruciating, heart-wrenching thing a human could possibly ever endure. I would love to talk if you have the time. God Bless you and your children and beautiful Kayla. My daughter has an older brother who is just turning 4. He loves her and adores her and she is a part of his everyday, Love never dies….
Dear Alexa’s Mom……Thank you so much for recently contacting me. Alexa is beautiful and I enjoyed reading your blog. I replied to you via email and would love to chat with you sometime. What you wrote on your blog regarding grieving parents is such a beautiful way to tell other’s how we feel. With your permission, I would like to post the paragraph you wrote about grieving parents onto my blog. Thank you so much for sharing. And, even though we have never met, we now have a connection with our precious daughters. I am looking forward to reading more about her. You are in my prayers……
Thinking of you and your girls and missing my baby girl… God Bless and stay strong.
Thank you so much for thinking about us…..Had a really sad day yesterday….almost like I just lost Kayla….it’s been 19 months ago today….I know you are hurting…you and your family are in my prayers.
MomMinus1,
I wound up on your blog via a google search for “what to say to a parent that lost their child to cancer” after a childhood friend of mine recently lost her 5 month old baby boy. I was looking for advice, what to say – what not to say – and here I am, an hour and a half later, humbled by your strength, love and will. Reading Kayla’s story, your own journey, has been an education in patience and wisdom, as well as greif. I feel priveledged to have been able to read about Kayla, her journey, and yours. Thank you for posting this blog. I am so grateful it was here to read, but at the same, so incredibly sorry it was here to read. God Bless you.
Thank you so much for your kind thoughts and words. And, thank you for taking the time to read about my daughter, Kayla. Just today, I was sorting through a stack of papers when I came across something I had written to myself. It said, “The more you tell your story of Kayla and her journey with cancer and her passing, the more you will feel healed from grief.” I’m not sure where I read or heard that statement, but, it is so very true. This is why I continue to write. Everyday there is a mother somewhere that will experience the death of their child to cancer…..each and everyday…..I know I can’t reach every mom that has to experience such a tragedy. But, I hope to find as many as I can and to let them know that they are not alone. Please feel free to forward my blog to your friend that just lost her baby boy. I would love to hear from her when she is ready to talk about it. She will be in my thoughts and prayers. Thank you again for contacting me.
I am not a mom, but a dad who understands all to well. May God bless you to find comfort in Him.
Hi Amber,
I’ve been reading your blog for a while and today I just read your most recent one, “Dear Mom.” I had to tell you that it was just beautiful. SO beautifully written. I just can’t imagine what it would feel like to lose a child. I don’t want to imagine it. I wish NO one had to deal with it. But I know that what you write has most definitely helped and inspired so many people. You really SHOULD finish that book so that so many more lives can be touched by your story.
I know we used to be “friends” on FB – not sure why we’re not now. But I really just wanted to tell you how great your writing is and how strong I think you are.
Shannon (Farris) Santagate (from Escambia HS)
Hey Shannon! Thank you so much for your kind and encouraging comments. I really do appreciate you taking the time to read my blog. I realize it’s very hard to read, especially, if you have children. Oh! I’m not on FB anymore. Thanks again so much for reading. Please feel free to forward it to anyone and everyone 🙂
Hi. I, too, have lost a child to AML. Chase was diagnosed on December 19, 2011, endured three grueling rounds of chemo, underwent a bone marrow transplant from his 16 year old sister, was in remission for about 3 months, relapsed, and died of complications on September 2, 2012. Chase was 14. Writing is also been very therapeutic to me as well. I created a prayer page on Facebook when he got diagnosed.
http://www.facebook.com/pages/Chase-Braudas-Prayer-Team/202701593151836
I know your pain and your struggle. Much love and prayers to you and your family.
Susan Brauda
Susan……I will never understand why our children had to endure cancer and not survive. I know you completely understand how it feels to watch your child be so sick and there is nothing you can do about it to fix it. I am glad to know that writing is helping you, as well. I would like to encourage you to keep writing. I don’t write nearly enough as I should; I find a little bit of peace throughout each word I write. I’ll be thinking about you and your family as you travel through your grief. I understand your pain. Please contact me anytime.
I love reading your blog and am so sorry for the reason that you are writing it. We have a lot in common. I too lost a child to cancer, am devastated, and wrote a blog hoping to reach out and help others who are going through this. This life is not what it could be without my Baily, my beautiful little boy.
I am glad to have found you.
Thank you so much for your comments and for reading. I hope you can continue to reach other’s who are hurting due to the loss of a child to cancer. Unfortunately, cancer doesn’t seem to be ending anytime soon and there will continue to be more and more mother’s like yourself and me. I know you miss your Baily so very much. My life has completely and forever changed due to losing my daughter, Kayla and I miss her every moment of the day. I’m looking forward to reading your blog, too.
Hi! I met you at the Cure Bereavement conference this past weekend and you had to leave suddenly, since your Allison was in the emergency room. I hope everything is alright with her. We were all very concerned about her welfare and were hoping you could return. I shared with you that it has been some time since I lost my beautiful Rachel to a brain tumor at the age of 18 months. In fact on February 14th, Valentine’s Day, it will be 11 years ago. I think it is great that you have started this blog and mom’s online support group! The first few years are especially difficult after losing a child, so we need to support each other as much as possible. Although the sorrow never completely goes away, with God’s help and the support of family and friends we love, we do continue to heal and receive much needed comfort. One of the best ways to heal is to reach out and give to others in any way you are able. I honor all you moms that have lost their sweet, special children to cancer. May the Lord continue to envelop and wrap you in His arms of comfort and peace!
Julie
I’m so glad to have found your blog. I lost my wonderful boy Siddy six weeks ago to neuroblastoma. I’ve desperatly been searching for other people who really understand how desperate it feels. I’d really like to join your support group but I can’t work out how. I’m probably just being dim. Thanks so much for taking time out from your own grief to extend the hand of friendship to us all.
Flora
Flora…..Thank you so much for writing. I am so sorry for the loss of your precious boy. I will never forget how difficult and painful the waves of grief were just after my daughter passed away. However, it’s been over 2 1/2 years since I’ve seen Kayla’s face and the pain can still be just as intense today as it was the day she died. I know your heart feels completely shattered and you would do anything to have your son back. I wish I could take your pain away from you right now. But, I would like to encourage and invite you to join the support group. You will read about many other mom’s that are just like you. If anything, you will see that you are not alone. But, please do not feel pressured to join if you are not ready. If you need someone that understands to talk to, please feel free to contact me anytime. I will keep you in my prayers. Here is the link to the support group: https://groups.google.com/forum/?fromgroups#!forum/momsmissingpeace
Here is the link to the BLOG: http://momsmissingpeace.wordpress.com/
I too just lost a child. I have a step daughter 20, a daughter 16, a son 12, and a daughter 6. My son Seth has just passed when he was 10 he was life flighted to Children’s Hospital he had a huge mass in his chest it was t cell lymphoma. Seth is special needs and doesn’t talk we had been treating him for bronchitis obviously that wasn’t the problem it had collapsed one lung and half of the other. We were 3 treatments away from remission one month away from 2 years when he had a massive seizure. The lymphoma had returned this time on his brain. Re diagnosed April 20th. He passed away July 6…….I’m completely and utterly devistated…..
Dear Cherie…..I am so sorry for the loss of your precious Seth. I know all too well the overwhelming pain you are in right now. At time, it feels like you cannot breathe. Please know that I am a mom that completely understands what you are going through. If you ever need someone to talk to, please don’t hesitate to contact me. You and your family will be in my thoughts and prayers.
I am so fortunate to have found your website. I lost Tommy at 17 to Hodgkin’s lymphoma. I have been told I should be over it by now but the grief can be overwhelming. I can go to work but find myself so envious of those who have healthy children. I don’t feel that there is anything to look forward to anymore. He was diagnosed on his 16 th birthday and we had him for 15 months after that. I’ve been told to move on but I don’t know how. Help.
Thank you so much for contacting me. I’m so sorry for the loss of your son, Tommy. My heart hurts so much for you right now. Please do not listen to those that say it is time to move on. This September 22, 2013 will be the 3rd anniversary of the day Kayla passed away….and I haven’t nor will I move on. You will learn to get “through” life. But, it will never mean that you have stopped grieving. Please contact me anytime if you need someone who understands to talk to. Thanks for writing.
Hi- My name is Daniela from NJ. We too lost a child to pre B cell Leukemia ALL. my daughter Juliana was 5-1/2 y.o. When she passed away on January 21, 2013. She was diagnosed with ALL on October 7,2010… Endured 18 months of regular tx, relapsed 18 months into treatment on March 13, 2012 had a bone marrow transplant + chemo, radiation, etc and then relapsed 81 days after her bone marrow transplant on October 16, 2012. we went and did so many different experimental treatments at NIH in DC and she succumbed to acute lung injury and passed away in January and there truly is no worse feeling in the world. Her twin little sisters (now 4) ask for her every single day, at any given part of the day, including her into every aspect of their life and ours. Cancer is the epitome of evil in this world and i know my husband and I always pray that we endure such pain of losing a child to this monster alone, so that we know that no other parent has to feel this kind of pain, sorrow and sadness. We know that us not how the world works, but we hope for so much more and that all of our children who left this world so soon, never have suffered in vain. We really do wonder, in fact frequently, why there isn’t more of a drive to uncover treatments, cures and testing for the number one killer of the world…. Instead of such a drive for irrelevant issues…. It’s quite sad. What makes this so much sadder is that the statistics of childhood cancer are so completely off! We know all to well that remission rates are good, but relapse rates are still so very high for so many cancers. I can tell you that it makes no sense, really it doesn’t. I, as many of you, had a perfectly healthy child, who looked alittle off and I took to the pediatrician and ultimately found out she was walking around with leukemia- the most popular of the childhood leukemias and also the most ‘curable’. Well, ladies and gentleman, cancer is cancer. And frankly, as I said to my daughters oncologists- ‘don’t ever tell a parent your child has an excellent chance of being cured’. There is no explanation for this monster and we do not have anything guaranteed in life. Thank you for your great blog and god bless! We, as parents, must always talk about our children, and educate others on their illness, how to participate in their lives, and being involved in making a difference in their children’s lives and others. Oh, and also ‘what not to say to a grieving parent’…. God bless you all.
Daniela from NJ
Thank you so much for contacting me. I am so sorry for the loss of your daughter. I understand your pain all too well. I would like to send you a private email and will be in touch with you soon.
I lost my son Brenton on 4/30/13 to ALL Leukemia. He was 14 when we found out on 8/12/11. he went through chemo then they decided that the only way to “try” to cure him was a bone marrow transplant. His little sister (7 at the time) was a perfect match and gave her marrow to him on 12/20/11. He did well with the transplant and for 7 months was free from the evil cancer, then on 10/30/12 he relapsed. They did chemo that didnt work, then sent us to St. Jude’s in TN for a trial study which didn’t work either. So he went home on hospice care and 2 weeks later we lost our precious son. I will never understand it, and it is so unbearable at times. I too have been told to get over it, but I know I never will and I don’t listen because those people have never lost a child. It helps me to talk to him on his facebook page and I still can’t turn his phone off so I text him too. We pray as a family every Tuesday at 10:40 pm, the day and time he passed, then we talk to Brent. I hope I can help someone by my post. Just little things we do to try to cope and live with the large whole in our hearts that he took with him.
Hi my name is Adel, I have to daughters 1, Sarah-louise who Is 22yrs the other is Emily 8yrs. On 29th July 2013 10pm my beutiful angel lost her fight after 4 months 2 weeks againt AML (M5), I can’t beive Sarah-louise is not here. I don’t think this pain will ever go away. Emily is distraught at times Sarah was like a second mum. Its the emptyness the void xxx
Adel….Thank you for contacting me. I’m so sorry for the loss of Sarah-Louise and for all of the pain you are enduring right now. I am all too familiar with the very ugly and disgusting AML and what it did not only to Kayla, but, the entire family. Her sister’s and I miss her so much. Our lives will never be the same. I, also, feel the emptiness which can be extremely painful. Please feel free to contact me anytime. I will keep you and your family in my prayers.
I am so sorry for the loss of your sweet girl We just lost our 20 year old son Wesley on July 27 from complications of non hodgkins lymphoma diagnosed in March .My heart is Broken but have 2 daughters that need me ,I just don’t know how to deal with this.
Dear Donna….I understand your pain all too well. I know you miss your Wesley so much. The grief from losing a child is unlike any other. I sent you a private email a few days ago. Please let me know if you didn’t receive it. I’d love to chat with you. Please take care and you and your family with be in my prayers.
We lost our beautiful 20 year old daughter to non Hodgkin’s lymphoma also. She was so healthy and athletic. Thought she had the flu, took her to the ER they said she had double pneumonia and transferred her to a Pittsburgh hospital. Next day they told us she had cancer, all in her chest. A week after being diagnosed, she had to have heart surgery done because of so much fluid. She couldn’t breathe. She had chemo for 8 months, different types. Nothing worked. Everything she went thru, I can’t forget it! It is with me all the time, that’s my memories. I cry everyday, I miss her so much! We have a son and they were so close. He got married a year after she passed away and his wife wants nothing to do with us and Michael to have nothing to do with us. We are broken hearted and feel so alone. We now have a grandson also but don’t get to see him.
I am so sorry for the loss of your son Wesley! My heart goes out to you. I am always here if you want to talk.
I’m so grateful that I came across website I was having an extremely hard night. Just browsing the web this caught my funny how things happen. I lost my son in May 25, 2011 to RMS RHABDOMYOSCARCOMA. He was 6 yrs old and the strongest person I have ever met. SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH PLEASE EVERY ONE KNOW POST IT EVERYWERE PLEASE. THE MORE AWARE PEOPLE ARE THE MORE CURES CAN BE FOUND AND MORE CHILDREN CAN BE SAVED.
Dear Madalyn….Thank you for writing. I’m so glad you found my blog. But, I am so very sorry for the loss of your precious son. And, you are right….Everyone needs to know that SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!
Hello I am so sorry for your loss of your beautiful brave daughter Kayla I am also sorry for what Kayla had to endure I know the pain a mother feels I just recently on 08/07/13 lost my son Daylan he was 22, he was diagnosed with B- ALL leukemia on 03/19/10 and did chemo for 2 yrs we were lucky that he had a 7 month remission from 04/22/12-01/04/13 and we were told a bone marrow transplant was the only option My son went through horrific skin , gut liver kidney and lung problems and I had to stand by helplessly as he went through all this as a mother we know the fear the depression we see in their eyes the “why me God” questions that are not answered He gave a heroic fight but in the end it was too much pain. I have so much guilt in why did I let him do this transplant, what could I have done to make him feel better he spent 71 days in the hospital and only left to go to heaven I spent each 65 of those days with him and it was the hardest days of his and my life. I was searching the web for something to help me deal with this grief I have 2 other boys who are 18 and 13 and we are all devastated by this tragedy How do I go on being a mother to my other sons when I feel so much pain I don’t want to go on living My poor son went through hell and how can I enjoy life without him I know you say for you its writing this blog which is so beautiful I thank you for being there for others going through the same thing
Dear Kat….Thank you for writing. I’m so ver sorry for the loss of your son. It is devastating what cancer is doing to our kids. I’d love to chat and will try to email you. I am a mom that understands how you are feeling. Please stay in touch and you will be in my prayers.
Amber, I want to bestow upon you the Liebster (Dearest) Award because you are very giving, you know we can’t walk this path alone, in your friendship we all heal.
http://headinmyhands.com/liebster-award/ If the link doesn’t work just cut and paste it into your browser. The questions I answered are the ones for you to answer as well. Send me a message on my home page when you have posted, no rush.
Thank you, Susan!! What an honor!!!! I will answer the questions and get back with you asap! I’m so very thankful for you and all of the encouraging words you offer. I’ll be in touch….
Hi my name Areli, I also just lost my son to AML Sept 22, 2012 he was only 4 yrs old. This is not easy at all. It seems just to be a big nightmare that you cant wake up from.
Thank you for contacting me. I am so sorry for the loss of your precious son. When I read that he had AML and passed away the same day as Kayla, my heart simply broke. It is so devastating what cancer has done to our children. I would love to chat more with you. I’ll try to send you a private email. I’m here any time you need someone to talk to who understands.
Hello My name is Natasha,I’m a mother of 3 boys 1 daughter. My daughter’s physical body left on December 1,2013 from complications of a bone marrow transplant.She was diagnosed with NHL in March 2011.For two years I watched my child suffer.Alot of chemo,hospital visits,surgies and sicknesses.March 2013 we were told the cancer spreaded and she had luemkmia and the only way to cure her was a bone marrow transplant.She and I agree to the transplant.On sept.26 she got the transplant and everything seemed great.Then a couple weeks all these complications arised.Three Icu visits,dialysis,different meds and life support for a couple days.Finally they told me my only daughter was never going to wake.I had to watch my only daughter take her last breathe.It was the worst day of my life and now I live without and I don’t know how.I have 3 boys I still have to be a mother to but how when part of me is gone.
Hello, my name is Valerie, I had 2 sons & 1 daughter. I too have lost a son to cancer.
I thought I would lose him in 1982 (he was in the Navy) and went to the Falklands war when he was 19 yrs old. He came home!
When he was 41 yrs old he had non-Hodhkinsons Lymphoma. After having 5 vertebrae replaced with titanium rods, he had chemo & radiotherapy , and miraculously, recovered. He would never complain, or talk about either ! He would always say “I’m fine mom”
He then developed High Grade & Low Grade Lymphoma at 47 yrs old, 2 lots of chemo, followed by a bone Marrow transplant, & still he stayed strong. (I thought he was ‘invincible’) then followed all the same symptoms of rejection, complications. Anti-rejection meds, dialysis,BronchialPnemonia, & life support machine. And still I thought he would recover. So was absolutely ,totally shocked, & grief stricken, when told by doctors, ‘you have 2 hrs to say goodbye before we turn off his life support machine! Was I living in a fantasy world? Was I in denial?how can I ever be the same person again. Like you, I feel the pain of the worst day of my life, that never leaves me, not even for a day. Before that day December 17th2012, I lived in hope. My other 2 children say they understand, but don’t want to talk about it, and say time will heal. But it never does! I try to remember ‘Happy Times’ and there were so many. But every happy moment since, I think I would wish him here to share it with me!
I have also, (in the last 15 yrs lost my parents, 3 brothers , 2 sisters to different forms of cancer.the grief and pain are real, but not the same as losing a child, no matter what age, when you watch them come into the world with so much joy, but have to watch them take their last breath and leave without you. They just take a piece of your heart with them.
But we must remember that we still have our love to give our other children.
I know you, like me, will never be that same person again, but hope we learn to lead a good life of happiness to share with the rest of our families.
Write to me if you like . God bless & keep you safe.
Hello Kat my name is Natasha.I lost my daughter Nashaya 16 to complications from bone marrow transplant on December 1,2013.I’m so sorry for your lost.I wanted to ask you question I understand if you don’t want to answer.Were you and your son told of the possibly of passing from the transplant.
What is your advice to me as a very close family friend who is about to loose her 14 yr old to Ewing’s Sarcoma. I feel helpless. I do my best in being there for her, the father and the other three kids. Ran some fundraisers, help with other fun events for the child and now it is nearing the end and it is devasting. I’m trying to be more of a supporter about Childrens Cancer Awareness as well.
Hello! Thank you for contacting me. My heart breaks for the family of the child having to let go of their son/daughter forever. I understand how you are feeling helpless and want to do something or anything to help. My best advice would be to continue with your love and support for the family, not only now, but, long after their child has died. After Kayla died, we had so many wonderful family and friends that sent meals, called, sent cards and more. However, everything eventually stopped a few weeks after she passed away. I was not expecting for people to take care of us with meals, etc. forever. But, most people don’t understand that just because the funeral is over doesn’t mean that the pain and grief are gone. Some of the best and most uplifting moments were when I received a card in the mail from someone a few months after she died. A simple and unexpected, “just thinking about you,” meant the world to me. It made me feel that Kayla’s memory continues on and she’s not forgotten. So, I would suggest to do something simple for them throughout the first year of the child’s death and on the anniversary from then on. This “simple thing” could just be a card, phone call, visit or just to sit with them and let them cry. Don’t be afraid to say the child’s name with the family. They need and want to hear other’s talk about their child. It provides a great amount of comfort for the family. Be patient with them if they become distant or deal with isolation. Everyone deals with grief differently, but, I have learned that many, including myself, can easily hide and try to cope on their own. If this happens, just a simple note or message to them to just let them know you are there, will help more than you’ll ever know. I would like to thank you for being so kind and understanding to this family that is hurting and not wanting to let their child go. Thank you for all you are doing for them. The world really needs more sincere and compassionate people like you.
Dawn, my 44 year just passed on 7/17 from Ewing Saracoma . He was diagnosed in December 2011. Finished 49 chemo treatments 25 radiation treatments, February 6th last chemo, we thought. It returned on 7/11. Remission on 11/6. Bone marrow transplant was our best chance. February had the bone marrow transplant but it returned in June. His body could not take the treatments. We thoughts he would go into remission again, but complications arose and we lost our precious son and I lost my best friend in the world. My world will never be the same. We are going to work with Siteman Cancer Center where he was treated to do anything and everything to try to find a cure…..I hope to be able to one say, no more deaths due to this dreadful disease. My heart aches for you and all the other mothers having to deal with losing a child. We will find a cure someday.
As I sit here crying..reading.. I realize I am not alone. My heart goes out to everyone who has lost a child to cancer. Our daughter Amy died on October 26, 2010 – at the age of 26 – from AML. She was diagnosed Jan. 2009 – chemo, stem cell transplant from match unknown donor, remission, cancer came back, more chemo, some drug trials… then hospice. From reading here.. sorry to say.. most of you know what we have been through. This “hole in my heart will never close. The edges of the hole get a bit softer sometimes and then sharpen back up. ” I am so very sorry.
Thank you for writing, Kathy! My heart breaks for you right now. Your daughter passed away just a month after my daughter with the same type of cancer. No child should ever have to endure cancer. But, I’m learning more and more each day how many children that do not survive it. I’ve sent you a private email. I would love to chat with you more. You will be in my prayers…….
My elder son, Asa Jon, was thirty-seven when he was diagnosed as having Hodgkin’s Lymphoma.
Some instinct told me that he couldn’t survive the treatment he was determined to undertake. And I was right. Exactly a month to the date that he was diagnosed, my son died.
That was fourteen months ago. And I’m hurting. I hate trhe doctors who missed his illness, fobbed it off for months as nothing more than a chest infection.
Dear Maggi…..Thank you for contacting me. I am so very sorry for the loss of your precious son. My heart hurts so much for you right now. I don’t understand why cancer had to take our children away from us. I am missing my daughter each and every day of my life. I know you are missing your son, as well. Please contact me anytime you need someone to talk to. Please take care.
Tommy was diagnosed with stage 4 hodgkins on his 16th birthday. This was months after he was told he had a sinus infection, a cyst, an allergic reaction and fainting from just standing up too quickly. We knew something was wrong but we were assured he was okay. I am so sorry for your loss and I understand your pain. You are not alone. I wish all of those who share this grief, peace. Heather
I lost 2 children 21 months apart, my daughter Chassidy was diagnosed with Non-Hodgkin Lymphoma the middle part of her junior year in H.S, 6months into treatment they informed us it was rare type and the outcome was not good, while my daughter was going through chemo and radiation I found my son Christopher dead in his bedroom, the death certificate says suicide, I just don’t believe it. My son b passed 03/08/08 and my daughter passed 08/16/09.
Dear Phylis…..I know your heart is so very empty right now. The pain and heartache from losing one child is completely overwhelming. And, your are endearing the devastation from losing two of your precious children. Oh how I wish I could take your hurt away from you right now. Please know that I am just an email away if you need someone to talk to. Please contact me anytime and you will be in my prayers.
Dear momminus1
I have a dear friend who lost her lovely daughter just few days ago from the same cancer… I has seen people dying in front of me and was hard ( was the father of my first child) however my friend’s pain got me into another dimension as a mother and would like to help her much more than I do… My friend is not speaking and looks like in remote control… Her child of 18 will be bury within 3 days ( her body is coming from Spain where she spend the last 14 month fighting leukemia with her parents by her side… Great parents by the way) and I am so afraid of that day and not been able to do more for her… Today & tomorrow due to her position of suffering in silent… I love her and will give her all the time need it but I am concern on her health…
What do you recommend for friends? I just do not want to push her but do not want to leave her alone
Thank you
Lourdes
Dear Lourdes….I’m sorry for not writing sooner. I’m sad to know that another child/teen has lost their life to cancer. The best thing you can do for the mother is to just be there. “Being there” could mean at her side 24/7 or it could be months from now when she is ready to lean on her friends. Each mother handles the loss of a child differently. So, I would try to be there when you can. Also, it is so important that those of us who’ve lost a child to cancer to make sure to keep their child’s memory alive; we do not want them to be forgotten. Sending her notes, especially throughout the first year (1, 2, etc. month anniversary’s, birthdays, Christmas, etc.) means so much to the grieving mother. Our pain does not stop after the funeral is over. We will carry this heartache forever. You seem like a wonderful friend to this heartbroken mother. Please feel free to forward my blog to her and maybe she will find comfort in reading about my journey through life after losing my daughter. Thank you for writing.
I hope you don’t find this to be an inappropriate or insensitive question … If you do, please do not feel obligated to reply. My daughter was born with a rare brain tumor, and we were told that she would pass away in a few weeks. We sought a second opinion, and thankfully she survived after 6 surgeries. She is now 11 months old, and under close observation. She will not be “out of the woods” for a long time. My question is, how did you cope during those months of treatment? Did you find it more helpful to try and live life as normally as possible, or to prepare for the worst? I am trying to be positive and assume that she will survive, but am terrified of being “tricked” by this awful disease. Thank you, and my heart aches for your loss.
Dear Liz…Thank you so much for writing. I prayed for you and your daughter as soon as I received your comment. Having a child with cancer is a very difficult and emotional road to travel. There is never a moment where you don’t feel scared of the unknown outcome. Kayla survived 81 days from diagnosis to her death. With the exception of a short two weeks from treatments, she was in the hospital the entire time. Basically, the hospital room became our home. I have two younger children at home that needed me. I struggled trying to balance time between Kayla’s hospital stay and my other two children at home. Thankfully, I have a wonderful family that helped me when I could not be in one place or another. I wanted to live a normal life, but, our world was completely turned upside down when cancer entered our lives. I had enormous amounts of hope all the way until the moment she died. I was in complete denial when the doctors told me that she would not survive. I didn’t want to believe it. I stood by her bed praying and begging her to wake up and for this nightmare to be over. There really isn’t anything that can be said or done to prepare a mother for the loss of her child. It is painful and devastating. Please do not give up on hope that your baby will survive. I know that there are many children that do. As a mother, we want to be the “strong” one and protect our children. There are times when you won’t feel strong and it is perfectly okay for you to cry, be angry, anxious, etc. I was terrible for keeping a lot of my emotions inside during Kayla’s treatment because she didn’t want to see me cry. So, I dealt with my a lot of my pain privately. Please allow yourself to express your fears and emotions. I think that if I had given myself more of an outlet emotionally, maybe, I would have been more prepared in the end. If you have a caringbridge or facebook page for your little girl, please feel free to forward it to me. I would love to keep up with her progress. Please contact me anytime. You are not alone and I truly understand what you are going through. Thank you, again, for contacting me. I will continue to keep you and your daughter in my prayers.
I just lost my only daughter Kayla, she was 7 years old and on September 2013 she got diagnosed with an aggressive brain cancer, and she passed away on January 18 2014, it’s being the worst thing that I never imagine it would happen to me, I struggle everyday even to breathe , I’m lost!!!! Thank you
Dear Lucia…..My heart aches for you right now. I completely know that pain and grief you are enduring. I wish I could help you. But, I know there is nothing anyone can say or do to make the loss of your daughter any easier. Please know that you are not alone. There are many mothers that understand what you are going through. I am part of an online support group specifically for mothers who’ve lost a child to cancer. I would love for you to join. If you are interested, please let me know and I will forward you an invitation to join. But, if you just need another mom to talk to who understands, I am always here. Thank you for writing me.
Hello,
You and your family are in my thoughts and prayers. I too am a mother who lost her children to cancer.I lost three children due to familial AML M2 monosomy 7 with GATA2 mutations. I lost one child in 2006 she had a bone marrow transplant and developed GVHD.She was 7.I lost another child in January 2014 after a third cancer relapse age 16.My youngest child just turned 12 was diagnosed in February 2014 and went to heaven last week.The cancer had spread to her brain,spine and pelvis. AML is a horrific disease……….
I can’t live without them. I am completely lost, heartbroken and distraught. I miss them so much.I have so much support here at home from my husband,daughter ,17,family and friends but the pain is so bad.It is unbearable. I cry all day everyday.I live for my children how can I live without them.
I know that my children are watching over me and will help me but all I want is to be with them…
Thank you for listening and God Bless.
Thank you so much for writing this blog. I found it this morning searching for some way to survive the overwhelming grief that we share–it has been 6 months since my 6-year-old son passed away from brain cancer. I’m so sorry, as a mother, that you have experienced the death of your child from cancer…it is hard to apply words to such pain. My heart is aching today, and reading many of the stories you shared helped to give my feelings some expression. I would be very grateful if you would send me the information for the Mother’s Online Support Group, and I am looking forward to reading more of your posts.
Lauren
I lost my 18yr old son to NK/T-cell lymphoma May 1, 2014. I’m broken & alone. I need help.
Hai. .. I am a mother who lost my 11 yrs old son to burkitt lymphoma ( a type of blood cancer). My journey with my son’s battle for cancer is on my website. http://www.amaanshahfoundationforchildcancer.org . Now I am just left with so many questions hope God help me seek those answers. Love to all the mothers out there who lost there kids.
On July 30, we lost our beautiful 30 year old daughter Madeline to stage 4 melanoma. For 8 months she battled this miserable disease. I don’t know where to begin. All I can say is the silence without her is deafening.
Lost Siraaj almost twomonths ago….love ur blog now I can share.first sorry for ur loss.my son was clear of cancer august last year he was only 5 then he got sick Feb this year and diagnosed wit TB we got called back ( he had aml-leukemia) abnormalities in blood .bone marrow came back positive chrmo given.things never went baxk the same.aftr that chemo doc said not long to live.I took him home May lived untill 22july this year he was my only child can’t have more.Ghadija
I lost my 17 1/2 month-old son, Xander, exactly one month ago today from two sub forms of AML. We didn’t know he had any kind of leukemia or anything serious until the week before he died. He made it through only a few days at St. Jude’s before passing into Heaven…
Gratefully I have wonderful husband and two daughters (5 and almost 4 years old), but being the closest one to my baby boy, I do feel quite alone at times.
It would help me greatly to hear how others mothers have “survived” after loosing a beloved child to cancer.
My daughter, Candice, was diagnosed with Acute Myelogenous Leukemia August 28, 2006. My son was born August 4, 2006. It was 2wks after having a blessing we found out the devastating news with her. I noticed her energy level was not normal, pale skin, and a huge bruise on her hip dark purple with red dots. Her dog had tripped her into the kitchen table chair when they were playing. My mother intinct kicked in. She started treatment, but it kept coming back. Then finally got her immune system down to do stem cell transplant. We knew each treatment was a gamble, but we were a team to fight this disease. We never gave up hope until the odds were against us. She went to Indianapolis for transplant. She went through surgeries, tranfusions, and pain. She stopped breathing twice. Candice ended up in ICU. She was on a kidney dialysis machine. We found out her cancer came back aggressive. I had to make the decision to take her off and let her go. Her organs were damaged from the chemo and radiation. She was in so much pain towards the end. She passed away on Mother’s Day May 11, 2008. I know she is in a good place. Candice will forever live in my heart and memories. Her brother, Dawson, was only 1 1/2 yrs old. He doesn’t remember her, but I make sure he knows how much she loved him. We talk about her. Dawson is 8 yrs old now. We let go of balloons with messages and put new flowers on her gave when its her birthday. Candice is my precious angel. There’s not one day I don’t think about her. She will forever be my baby girl.
Hi, I sometimes choke on my own words, i don’t know what to make of what happened to my beautiful son Nathan. One minute he was jumping off his water slid and screaming with joy, the next he’s being treated for supposed constipation and in 5days after all the tests, he’s operated on and found with lymphoma. A type of cancer that grew to the size of a small melon and went un noticed until it blocked his intestines. He died a few hours after the operation. Iam still trying to understand it. Accepting it is far from what iam. He turned 3 a day after his burial. Iam not sure what iam looking for, but i know i just started typing this. My heart breaks everyday. I can’t imagine this pain ever going away.
On August 11,2014 my son David( age 42) lost his 4 year battle with cancer . I was very close to him , taking him to most dr visits, chemo, long stays in the hospital …. And now he is gone . My life feels empty, my days long and sad. I don’t know if my life can ever be happy again .i know in my heart he wants us to all go on with life , he lived his life to the fullest every day since he was a young child . Just seems impossible here without him .
Hi it’s been almost 3 years that I lost my daughter to cancer (oesteosarcoma) she was 12 when she got diagnosed and passed away on February 7th 2012 at the age of 17. I’m glad you have this site brcause for a long time I was so afraid of talking of letting people know how I’m feeling because I thought nobody would understand me but now I know that what I feel is normal and that their are more mothers feeling the same way. Thank you for existing.
Hi my name is julie I have lost my 19year old daughter with cancer her name is chloe she has been fighting cancer 2009 my daughter chloe past away 21. 4. 2014 chloe was my bestfriend + my daughter all rolled in2 1 miss her so much feel so lost without my daughter
I just lost my eight year lil princess Riya to a brain tumor on 8th October 2014. She lived quite happily till her last breath. But I couldn’t come over this huge loss . She was so good at everything be it studies, skating, dancing kathak, singing, drawing and above all loving me and all the poor and needy.
Hi to everyone, I’m a mother whose also lost a beloved 4 and 11 months old son to nueroblastoma. He was diagnosed Oct 2012 and lost his battle on 16th Jan 2015. Its really hard for me as he was my only child.
Hello. My name is Cyndi. I live in Lawrenceville, Ga. My son was diagnosed Jan. 7, 2015. With a very rare cancer. He lost his battle on Jan 21. 2015. 2 weeks after his diagnosis. I am so lost and confused. No one understand my pain or my confusion. Everyone says get over it, move on, stop dwelling on it. I dont know how. Please help me.
I lost my daughter to 22 month. Her name Judith Castillo miss her so much.
Hi I just lost my daughter Ashley who was 25 on April 9th of this month.March 3 2014 After giving birth to her son Oliver she went in the hospital to have a tumor removed from her chest area. When the opened her up it was the size of a football and it attached itself to her upper organs. She had a aggressive for of liposarcoma soft tissue cancer.They said it was her hormones that made it take off like that.She has been through two chemo treatments many trips to slone in Ny for surgery and radation. And the tumors just kept spreading all through her body.And then to her brain . She had a good relationship with her son Oliver and loved him so much for 6 months. After that it was not so good.She was very sick and started to push herself away from him.She got to the point she could not do it anymore. I lost my only child my baby.Its been very hard and it hurts so much! I know I have to go on for my grandson. But it’s so hard!
I was reading your story and I am so sorry. I am glad I found this blog. I lost my son Brian almost 4 years ago from AML, on April 24, 2011. He was 16 years old. He was a junior in high school and was having a good life. On March 2011, he got 4th place on high school bowling on the State of North Carolina, he had a beautiful and sweet girlfriend, he was checking colleges, he was doing good in school, taking some honor classes and his lowest grades were 90, he used to help my husband and I teaching Sunday School at church. He specially liked working with Special Needs kids. He was tall and handsome and had a lot of friends that used to come to my house all the time and I enjoyed cooking for them. On April 1 he started with fever at evening. I thought it was the flu and gave him tylenol and liquids and took him to the urgent care on Monday morning. They did tests and asked to come the next day, because they sent the tests to another lab. Next day he was diagnosed with leukemia. Next day he was sent to PICU on Duke Hospital. It was such a hard time. He was entubated that Friday and started treatment with chemo. First, the cells were going down with the treatment until zero and he was taking out if the respirator. He was awake and received some visits from his friends. On Saturday the 16, he had troubled breathing and put him in induced coma and in a biger respirator. Every single day a different organ was falling and finally on Easter Sunday, the 24 we had to make the terrible decision of taking him off life support. This is the worst thing that can happen to someone. Everybody was praying so hard. The pain, dissapointment, guiltness and anger is incredible. The pain is never gone, you learn to live with it. Every morning I get up, put one foot in front of the other and keep walking. I know the Lord is been with me during all the process, because that is the only way I can survive. I wish we can find the cure for this disease soon, so none other children and parents needs to go threw this nightmare.
It saddens my heart to see so many posts about parents losing their child to cancer. I lost my beautiful daughter Chantal to brain cancer seven years ago. She was 20. For those of you who have just lost your child, I understand that you are looking for answers and that you are totally heart broken and don’t know how to go on with your life. It took me at least five years to feel myself again and now, even though my heart will never be the same, the pain has become easier. The pain will never go away but it has become easier. I am back to living a ” normal” life and I have also found the strength to write a book about my story and I am in the process of getting it published. If you would like to follow along with my journey, you can follow me on my Facebook page http://www.facebook.com/ShellyDubois-Author. My book is called “I Lost My Child To Cancer”. A Mother’s story from diagnosis to passing. The intention of my book is to hopefully help others like yourselves know that you are not alone and what I did to get through my grieving.
Every day, children are diagnosed or pass on from this dreadful disease and we all need to help each other get through this. My heart feels not only my pain but all of your pain as well.
I recently lost my 18y r old daughter after a short battle with acute leukemia. She was diagnosed feb21,2015 and had a hard battle in such a short time, dialysis feeding tubes. Insulin pokes blood draws chemotherapy u name it she lost this horrible battle on march 30,2015 im a single mother of four well as of a month ago anyways now my three children ages 13,10,6 have had a REALLY hard time finding the NEW NORMAL,Because the old normal dont n WONT EVER EXCIST AGAIN,,, HOW DO I STAY STRONG FOR MY 3CHILDREN WHEN I FEEL SO SHATTERED?
Hello! I met you today at Holsenbeck Elementary when we talked about my tattoo. I have been thinking about our conversation all day, so I decided to try and find your blog- and I did! I just wanted to say that I am praying for you and your family. I’m so sorry for your loss, and I’m glad we met today. I thought it was so neat the relation my tattoo and shirt had with your daughter.
You’re in my thoughts and prayers.
Hi Jonna! It was such a blessing to meet you! I recently sent you an email and would love to hear back from you soon.
I lost my son to ALL after been declared terminal on the second week of March he was given 1 to 2 months but realistically was 3 to 6 weeks he only lasted 5weeks and is been so hard , during the day I’m ok because I keep my self busy with work,but once I’m done with work and the night comes I start to cry. I just. Want to know what’s normal after losing a child my son just made out to his 35th birthday
I lost my baby boy 2 weeks ago today to JMML. I need to talk to someone who knows what this nightmare feels like. I am losing my mind.
Dear Kristen….I am so very sorry for not responding to you sooner. I have not given my blog much attention in a while. And, I apologize for that. I do understand the pain from the loss of a child. There is not other pain like it. I’m so sorry for the loss of your baby boy. How old was he? There have been many days when I thought I was losing my mind, too. The first 2 – 3 years were the hardest for me. It has been over 6 years since Kayla died and there are still days when I just want to stay in bed. We will never get over the loss of our children; the heartache is always there. But, there will be days when you can smile again; even for just a second. And, it doesn’t mean you are over the loss of your son or that you’ve forgotten him. It will just be okay to have some joy in your life again. I am part of a wonderful online support group for mothers who’ve lost a child to cancer. This group has given me more comfort than I could imagine. I would love for you to join us. If you are interested, please let me know and I will email you the information. Contact me anytime. Thinking and praying for you…….
Hi my name is Gayatri I lost my beautiful daughter hoshika ALL
I have full of pains in my heart, what can I do
Hi Gayatri……I’m so sorry for the loss of your daughter. I know your heart is full of pain and grief. There is nothing like the loss of a child. It’s been over 6 years since my daughter died and it is still so painful. I am part of an online support group for mothers who’ve lost a child to cancer. Please let me know if you are interested and I will email you the information. Please contact me anytime…
Hello my name is Carla Holloway, I’m so sorry for your loss. I too lost my 16yr old son Darian to a cancer called Neuroblastoma stage four in 2006. I’m feeling so disconnected from life, even though I have a wonderful husband, beautiful children and adorable grandchildren, I feel empty and lost. I’ve written a book about Darian and my journey, in hopes that I would inspire women like me, but I’m having a hard time inspiring myself. My hope is that I can find women like myself, who I can connect with and hopefully help me out of my funk. My email address is carlarholloway@yahoo.com and I’m looking so forward to hearing from you.
Hi Carla….I apologize for not getting back with you sooner. I’m so sorry for the loss of your son. I understand how you are feeling. I think there will always be an empty place in our hearts. We will always miss our children that we lost; it does not end. Writing has helped me through grief immensely. But, I have not written much in a long time. Sometimes I get lost when trying to find inspiration to write. Starting back on my blog is something I really need to do. I am part of an online support group for mothers who’ve lost a child to cancer. I will email you the information. Please feel free to contact me anytime if you need someone to talk to who understands.
I lost my son to neuroblastoma in 1977. He was diagnosed at 6 months of age. He died when he as 15 months old. I have never been able to resolve his death in my heart. I am now 68 yrs old do you think their is any hope of help for me? People say to me that it has been so long that I just need to forget it. That is not possible for me. I miss him so very much. I am so tired of this torture.
Dear Dolores….I know you are hurting. You are not alone. I’m so very sorry for the loss of your son. People should never say that it has been long enough and now it is time to get over it and forget it. I have learned that it doesn’t matter if it has been a hundred years or 1 day; the pain due to the loss of a child is always there. I think that the only thing that is different for me now and over 6 years later is the acceptance. I’ve accepted the fact that Kayla died on September 22, 2010. I hate it and I will never get over it. I can just acknowledge that this tragedy happened to my beautiful daughter. You are in my thoughts and prayers. Please contact me anytime if you need someone to talk to who understands.
Delores….I will be in touch with you through email to tell you about an online support group that I am part of. It is for mothers who’ve lost a child to cancer. It might be very helpful to you knowing there are other moms in the world who’ve experienced the same devastating loss. They have been there for me and comforted me like no one else. I’ll be in touch…..
Hi – I am interested in the Moms support group you referenced. We lost our 13 year old some to ARMS last week.
These posts leave me in tears. I lost my beautiful son Gregory to AML on June 18, 2015 he was 30 yrs. old. He fought so hard, chemo, bone marrow biopsies, stem cell transplant from his sister. Cancer came back after 5 months. Tried everything again but then the infections started to take over. Feel like a failure as a parent a Mother is suppose to be able to help her child. It’s good to vent a little as I have no one to talk to about this. My family says I have to let it go & move on with my life. Not gonna happen.
Hi Louise! I am so very sorry for the loss of your son. I know your heart is hurting unlike any other pain that you’ve ever experienced. AML is an absolutely horrific and devastating disease. It is so unfair what cancer has done to our children. But, please don’t feel like a failure. I know I felt this way for a long time when Kayla died. I wanted to do anything and everything I could to heal her. But, I just wasn’t able to do it. It took me a long time to realize that even though I couldn’t save her, I wasn’t a failure. It’s very difficult to hear things from our family about letting go and moving on. Well, you are right; it’s impossible to let go. We will never get over the loss of losing our children. We have to move on with our lives, but, it will just not be the same again. And, I’ve learned that moving on does not mean that our lives will continue to get worse; there will be moments of joy and happiness again. The grief and pain will always be there and there will still be days when you feel like you can not get out of bed. But, you will be able to have moments when you can smile and it will be because you want to and not because you have to….Please take care and feel free to contact me anytime if you need someone to talk to who understands. Thank you so much for your comment. 🙂
Hi my name is Daphne and my oldest child Nia passed away on her 19th birthday. August 1, 2017. She was diagnosed with AML June 2014. I really don’t we’re to began. I just need to speak to someone who knows what going through. And ask the question. How are you getting through it. Because is by far the hardest thing I gave ever experienced in my life.
Beautiful intro.