Loss from Cancer

[kalimac]

My precious 20 year old son died from a rare and aggressive type of sarcoma called desmoplastic small round cell tumor. It is a disease that predominately strikes boys and young adults, although we know girls with it too. It is a devastating diagnosis because there are few treatment options. The cancer grows uninhibited and undetected within the soft tissues of the abdominal cavity . . some tumors can reach enormous sizes before detection. There are a whole category of small round cell childhood tumors . . desmoplastic is one of the more rare kind and is in the same cell type as Ewings sarcoma (bone) and Rhabdomyosarcoma (muscle). Needless to say our son was a Junior in high school when diagnosed. We were traumatized at the time . . it was just horrific.

Nate had been a healthy, normal kid playing basketball in school and working weekends. He was the type of kid that never gave us one shred of trouble. He was the youngest of three and just a total joy for us. We loved being with him and he never seemed to mind us considering that he was a teenager! He never was the best student, but he was always optimistic and could point out that,. yes, maybe he didn't do so well in Math but look how great he did in Music. Since he was our third child we didn't really care that much about grades . . we just enjoyed him too much.

In January of 2005 he began complaining about not being able to keep up with the other boys in basketball . . we thought he had the flu. He also mentioned something was different about his stomach . . but in all honesty it just didn't register with me. Sometimes I feel guilty about that . . why didn't I pursue it more . . maybe it would have made a difference. He finally saw his doctor in February . . who also seemed perplexed. A routine blood test revealed low iron and a possible thyroid condition. So we set up an appointment for the first of March with a Thyroid specialist. The horror continued though . . by late February we knew something was seriously, seriously wrong . . especially when my son asked me to check something out that was strange . . his heart was now beating up by his neck. We finally saw the specialist . .a two hour drive for us . . he took one look at my son . . and said that there is more than just a thyroid condition and sent us two hours home to our regular pediatrician. Our doctor was mortified . .still not telling us what was wrong. We ended up in the local emergency room with him and no one would let us leave or tell us what was happening. Our doctor arranged for him to be sent to a Childrens Hospital . . by than we kept hearing the words 'cancer' . . still not too much information. We arrived at 11:00 at night to the Children's Hospital and within the first examination of our son we started hearing cancer, cancer, cancer. We tried to stay brave for our son, but my husband and I were wrecks by that point. A CT confirmed our worst fears . . our son was stage IV . . filled with tumors in the abdominal cavity . . some as large as volley balls . . lymph node involvement, pelvis, spleen, liver, diaphragm . . no one had ever seen anything like it. We were horrified beyond belief.

And, that was the start of a three year nightmare . . a daily terror that we would lose him . . we were never given that much hope to begin with. But our son surprised everyone  .. even his doctors .  . and underwent nine months of high dose chemotherapy and three major surgeries. The entire time he was optimistic and just as joyful for us as he had ever been. We held close all the days we had with him ..knowing that at any minute it might be the last . . there were no guarantees . . none because his cancer is so rare that there is no known protocol treatment . . all treatment is experimental. For three years we did this . . hoping . . always maintaining hope . . until this Christmas.

Nate always was healthy for a cancer patient with such an aggressive disease. But his luck ran out . . by Christmas and New Years of this year he was in extreme pain and than he went into respiratory distress in his doctors office. He was hospitalized for three weeks . . and again, surprised his doctors by rallying and started to recover from pneumonia in his lungs. Again . . this disease is so rapid . . that .  . due to his pain and the pneumonia he had gone off a chemotherapy . . and was waiting to go on another experimental chemo . . but he didn't make it. The cancer grew uncontrollably and spread throughout his body once again. He was in alot of pain and under a lot of heavy duty medication (fentenyl pump with bolus). We had no choice but to bring him home on hospice care. He was mobile most of this time and some of his comments . . so precious to me now . . (he asked me once "Am I an angel yet?"). Too much to tell really. He died in my arms eleven days after coming home from the hospital. My baby . . we brought him into the world . . and we helped him leave. I gave him permission to die . . while the whole time I was screaming inside for him to stay with us.

I am sorry for the long story . . cancer is a long, long process . . the long good bye. It has now been a month and I miss him so, so much. I am glad he is not suffering . . but now we are!  Thanks for listening . . it helps me just to write this all out. I just realized today that the fear we have been living with for three years . . is now gone . . replaced with the grief of loss .. but the fear is gone.

[wyomingsal]

I am at work so can't reply in full right now, but I wanted to at least let you know I have read your post and it brought me to tears.  The story of your precious son is heartwrenching.  I know you are heart broken each day. 

Sal

[mikesmum]

Kalimac - I read your story with tears and an ache in my heart.  A precious boy, so much to live for, having given so much to you and your family.

Unfair to be so young, to have such a rare condition, to have so much to live for and yet with it all such an insight, " (he asked me once "Am I an angel yet?").

There are no words that will lessen the pain of losing Nate.  There is nothing on this earth that will come close to explaining why him, why now.  The special strength that allowed you to care for him and hold him as he found peace is something that never ceases to amaze me.

Thank you for sharing Nates story..........a truly special boy from truly exceptional parents.

 

[shellbellsmom]

Kalimac,

My tears are flowing...for you, me and everyone else who has been effected with cancer.  "Cancer Sucks!" and I wear this proudly on my shirt that I was given after my daughters death.  I too beat myself up thinking if I only knew sooner....would have have been a different outcome, would we have found it sooner, would they still be alive today.  My daughters cancer though different (leukemia) from your son's still did the same damage...with the same end result.  I wish I could say something that you may find comforting but my pain is still too strong.  All I can say is that I will fight for a cure till my dying day- for all cancers!

Take Care,

Sue

my daughter's memorial website; http://www.michellelunn.com

[heartbeataway]

Oh kalimac,  I am so, so sorry for your loss.  You are so new on this journey, so very new ...........

Pour your heart out with your keyboard.  Let us be your sounding board. Take care of you.  Don't be shy, ask if you need help.

Again, I am so sorry!

JasonH's Mom, Bonnie

[heathershope]

kalimac,

 

I am so sorry.  I felt like I was reasing my daughters screen play.  Heather was twenty yrs old wheshe developed a swollen lymph node in her neck.  For several months prior to this she had complained of vague gastrointestintal complaints, naseau, fullness onher left side.  She kept saying "you can see my side puffing out".  We took her to the doctor several times, they blood work all came back as normal, we had an endoscope done, her stomach was fine.  She kept saying "I think I have cancer" and I would say "Heather you don't have cancer" and she said I just don't feel right.  Well when the lymph node presented then her doctors flew into high gear and within a week had an ultrasound and biopsy scheduled.  At her ultrasound they founf "unsual findings" and sent her right to the emergency room (where my husband works) and did aCAT scan.  What they thought they found was very involved Lymphoma with so many tumors they could not even visualize the pancres.  As it turned out aftera week of biopsy reports and sending it to University of Michagan for final diagnosis was a rare and aggrssive form of cancer called Large Cell Nuero-Endocrine cancer originating in the pancreas.  It was not that they could not visualize the pancreas, it was that the pancreas was one big tumor, about the size of a large grapefruit.  At the time of diagnosis she also had 7-8 mets to to liver and lymph node involvement.  Stage IV, terminal, paliative care only.  They told us this was a one in million chance that she would develop this rare cancer especially so young....well weren't we the lucky ones then. 

 She was given 3-6 months.  She also rebounded and surprised her docters on more than one occassion.  She lived 14 months.  Three of wich she did chemo with NO success and horrible side effects.  She then decided to LIVE her life what was left with suppressive hormone therapy and she spent the next 6 months trveling, skydiving, white water rafting, parasailing, swimming with the dolphins and a trip to Hawaii to celebrate her 21st birthday.  She had some very bad crisis situations in between her attemts at living but she fully enjoyed opportunities she was given.  Her health held out till January 2007 when began a steady decline.  We were on the list for clinical trials in Iowa and Sweden.  She never made it.  She died at home in her bed with Hospice care on May 12, 2007. 

 I completely understand your statement about giving permission while inside screaming for them not to leave.  Every morning that last week Heather would wake up and say "why am I still here?"  One day she told me that everynight before she went to sleep she asked God to take her that night.  I sheepishly smiled and said "Heather, everymorning when I wake up I say PLEASE GOD, not today"  I promised her I would not say that again and hard as it was I kept that promise and she died 3 days later, the day before Mothers Day.  That night she had fallen and as I sat on the floor with her trying to get her back into bed I said to her, Heather if you are hanging on for Mothers day for my sake, don't, go ahead and go and I will be okay.  She shook her head and went back to sleep and the next day died at two in the afternoon.  I awoke on Mothers day without my precious daughter but took comfort that her pain was over, though mine was not just beginning, just taking on a whole new direction and a new ferocity.  My heart goes out to you and all you went through.  The roller coaster ride, the fear, the dashed hopes time and time again, the frantic search for something the doctors might not know about.  You are so early in this journey and my heart bleeds for you.  It is a long, sorrowful journey with many pitfalls you don't even see coming.  One for me was the grocery store...who knew grocery shopping could be so apinful when you no longer need to by your childs favoraite foods. 

 

Anyhow...I will stop my rambling, just know you are not alone in this journey.

 

Terri...Heathers mom

[mikesmomrs]

Kalimac:  I am so very sorry for the loss of your precious son, Nate.  Your story brought tears to my eyes and memories to the surface...my son Mike died of brain cancer on Oct 14, 2006, and also had some time - 17 months- that we cherished....like Sue, Heathersmom, I too will fight for a cure for this terrible disease.  While at one of his last baseball games watching his treasured Red Sox play, Mike said "Mom, please be sure to donate to the Jimmy Fund...it's so important, they need to do so much more research."  On one of our visits to the cancer center in Boston where Mike received most of his treatment, as we were getting out of the elevator, a young girl entered, pulling a wagon with two small children, probably 5 or 6 yrs old, happily laughing and tickling each other.  They were both completely bald.  After the door closed, Mike looked at me and said "It's bad enough for me to be in this situation, but it just seems so really really awful for these young children; it's just so very sad."   I know that he was thinking of his own three young boys, and praying they would be spared this in their lives. 

 

Nate seems like a very special boy, who gave so much...  As Trudi, Mikesmum, said, there are no words that will lessen the pain....but coming here and sharing your story does help...when you are feeling the need for support, come here and get it, and when you are stronger and can offer support, you will come and offer it...both help us heal.   Your pain is so new and so raw, each day is a challenge.  Please know that we will be here for you, any time, night or day. 

 

Like Terri with her Heather, I too told my son to go...he had been hanging on for his dad's birthday, which was October 12th, and he was so very proud that he had made it...but that night he lost so much ground, and two days later, we told him to go, he deserved to be free of this, and as we sat by his bed, his wife on one side holding one hand, me on the other, holding the other hand, and his dad standing behind the bed, cradling Mike's head in his hands, the rest of the family and some friends standing at the foot of the bed, Mike slipped away, peacefully.  A couple of nights before that, as we sat alone in the predawn hours, he had asked me if I thought that when he meets God, would it be for him like it is described in Mercy Me's "I Can Only Imagine."  When Mike quoted "Will I be able to speak at all?"  from the song, I joked with him about how he'd never had a problem speaking to anyone on earth...  Mike loved dark humor, and used it frequently to get him through this year and a half of facing the end of his life. 

As I stood on the porch, watching them take him out of the house for the last time, I too was screaming inside...and the screams are still there, though a little quieter some times. 

As Terri, Bonnie and others have said, you are not alone on this journey.  Please come back often.

 

love and peace,

carol  mikesmomrs

mike's web site is www.james-michael.virtual-memorials.com

(Sue:  When I tried to visit Michelle's site, I was unable to click onto any of the other pages after the first one...is there a password? )

[kalimac]

    Thank you all so much for your responses. I will be writing back to each of you.

We just got our son's death certificate today and I feel like I just got sideswiped. I was doing so well . . and than . . bam . . there is was in black and white . . all official.

What do you do with a death certificate anyway? Do you put it in his baby book beside his birth certificate. I don't know. It's just a piece of paper. He didn't have any assests . . though I do think he had a small amount of money in a savings account. Because of state insurance issues he was not 'allowed' to save any money or have assets if he was going to stay covered for all those 'experimental' treatments.

I'm rambling, I'm sorry. I know it is just a piece of paper and I'll figure out what to do with it.

[bbarbie55]

Kalimac you have my prayers I also lost my daughter to Hodgkins in April 24th 2007. She had avery agressive form and was never in remission and finally from all the chemos she developed pneumonia then ards and passed abouteighteen moths after her diagnosis. Come here and rant and we listen we know how you feel we've been there.

Deb

[mikesmum]

Kalimac - not sure what you do with the Certificate.  I didn't get Mikes.  His partner was named on all documentation as his next of kin, with the exception of her Government payment where she told them she was his 'carer'. 

I had to go to the BMD dept and apply for Mikes certificate.  I had to prove I was a relative and then when I finally got it it had wrong information on it.  His partner had given incorrect details when she filed.

It hits light an after shock....just when you thought you had some handle on all this - the ground goes out from under you and you are knocked down by an invisible force.

Mikes Cert is in folder with other certificates, and yes its next to his birth certificate.  The finality is devestating.

[shellbellsmom]

Kalimac,

I just tried Michelle's site and it works for me; I would try with another brower.  Shouldn't need a password.

Mikesmum- love your son's site- I am singing with it.  Love the song too; In my life...

What a wonderful family.

[mikesmomrs]

Sue:  That was me (Mikesmomrs) who couldn't access Michelle's site.  But, I was able to today...don't know what was wrong the other day; gremlins, I guess. Today it worked beautifully, and it is a beautiful memorial for such a lovely daughter.  The pics are fantastic, so sweet.  thank you for sharing. 

Also, I think maybe it was my son, Mike, (I am Mikesmomrs), whose site you visited....and thank you so much for visiting and spending some time...yes, the music is really great...Mike's wife had chosen "In My Life" to accompany the beginning of the slide show shown at his memorial service.  In the middle they played Mike's sister signing "I Will Remember You" at Mike's request, and the last part was shown to the theme from Star Wars....very strange, I know, but Mike's all time favorite thing in the world since he was only TWO, was Star Wars and all it entailed. 

I know it can be confusing here, because mikesmum is also mother of another precious Mike, and I am Mikesmomrs, mother of a Mike.  To make matters even more confusing, though it doesn't come up often, both of our Mikes were 31 when they left us.  I know they are all together, with all of our children, living the good life---I truly believe they are who brought us all together. 

To ALL:  I do wish all a very happy and blessed Easter tomorrow.  I know that it is another difficult holiday...the memories run deep and are so bittersweet sometimes.  But we DO have those memories, and they are wonderful when we can take them out and look at them and manaage to smile...I am so thankful for them. 

love and peace to all

carol  mikesmomrs

this is a picture of Mike's wife, Sarah, and the three boys:  Damon in Sarah's arms, Kameron on the left, and chandler on the right.   Taken at church, the last Easter Mike was here, 2006---Mike had already been taken back to the car and the boys wanted to see the front of the church. 

[mikesmum]

Carol - Just looking at the picture of you and your Mike then at Chandler with his siblings and mum, my goodness isn't he the image of his dad!!!

Suzanne - Michelle site, her story and your continuing on to raising funds, awareness all go to honouring your truly amazing daughter.  Loved the translations of 'hospital speak'.  Being a nurse, I used to give a time then add "thats nurse time, not the same as your watch!". 

To all, it really does get confusing.  I'm Mikesmum, Trudi.  I chose this cause for most of my mum life I have been Mikesmum, Stevesmum, Melissasmum etc.....  Carol is Mikesmom.  The vowel is the difference, the love and loss the same.  Both of us lost our Mike's at 31.  I believe they formed a watchover dad's club to make sure their babies are safe!

'In my life' is a song I have requested be played at my memorial.  As macarbe as it seems I have put together my service.  It has provisions for Steve and Melissa to have input.  It was just something I did in my early days after losing Mike. 

Music on my Mikes memorial site is diverse.  Ben Harper, a song Mike chose to have played at his wedding...it never eventuated, instead it played as his lifes story was presented at his service.  Two others downloaded by his sister, heartfelt reflections of her loss.

 

http://micheal-shane.virtual-memorials.com/main.php?action=reflections&mem_id=10554

 

[heathershope]

A death certificate is so much more than just a piece of paper.  It's proof that your child is gone and it's so impersonal that it makes you want to scream when you read it.  My beautiful Heather was not just born on...died on...cause of death stage IV cancer of the pancreas.  I got so angry when I recieved it.  We had Heather cremated so I put hers with her urn and I have one in my legal papers.  I know it was a rhetorical question but I got angry thinking about it.  Anger translate to hurt and pain.  I hate that piece of paper more than anything in this world.

 

I'm sorry, now I am rambling.  It hit a nerve I guess.  My prayers are with you as you navigate this painful journey.

By the way you can to memory-of.com and put in Heather Ingram. That is the only site we have for Heather at this time.  We are hoping to form a Heathers Hope foundation, we use the logo for our Relay For Life team we do every spring but I would so love to expand it somehow, someday to help families with expenses while taking care of their "adult" children.  We found no help because Heather was 20 at diagnosis so our lost income was substantial because I wanted to take care of her myself.

 

Terri

[mikesmum]

Terri - Heathers hope foundation sounds brilliant.  Here in Victoria we have Ronald Mac Donald house and other support networks for young children and families, but it seems this dwindles for  those post adolescence.

Diagnosis and ensuing treatments have the same impact, regardless of age.  The never ending appointments, admissions, treatments and ongoing care take a substantial toll on everyone involved. 

I wish you well.  Let us know if you need anything....not sure what I have to offer.  Worked in oncology as a nurse and then for a number of years at Peter Mac in Nuc Med.  Really opened my eyes and mind as to the wider impact a diagnosis/treatment have with a strong support network.

As for the death certificate.  It is a bureaucratic  finality that has no bearing whatsoever on our child, their lives and the impact they had in this world.

Hugs & thoughts are with you....Trudi

[shellbellsmom]

Trudi I think I got it now (mikesmum=trudi/ mikesmomrs=Carol)...thanks for bringing it to my attention.  I have been rather slow these last few months...grief brain I think.  Anyways, your memorial site for your son is awesome.  You have put your heart and soul into a wonderful tribute to him and his precious life.  The music, slideshow, photo albums and words/poems will keep his memory alive.  You have got to love the internet...

I am trying to continue working on my daughters site...need to add something that people can leave messages to and need to add some music.  My hubby is the web guy and he gets too emotional working on it...He cries and says he shouldn't have to be doing a memorial site for our daughter...life isn't fair. 

[cousin2anangel]

Lucas was born on September 22, 1999 a beautiful & healthy baby boy...But God had another plan.

Lucas was taken back home on March 19, 2000. After a 5 day battle with Cancer.

We miss you ...

"Kids aren't suppose to have cancer, they're suppose to have a future." - Jeff Foxworthy

Around a few months before Lucas' cousins 7th Birthday (March 11th) brusing was showing up on his body & Lucas wasn't a baby who moved around alot so the bruises we didnt know how he was getting them. Lucas cried everytime someone put him down he always had to be held. He was also a sick baby but no one knew why.

After Lucas cousin 7th Birthday in March 2000 he got much worse so they sent him in to the Hospital in town on the 15th. He was then sent to McMasters Children's Hospital in Hamilton. There he was diagnosed with AML The Leukemia adults get. He was covered. He was diagnosed on March 16th.

Lucas got a port put in & given Chemo, but it was just to much Cancer in his body. On the night of March 18 he got mich worse & they knew he wasnt going to make it. On March 19, 2000 around noon Lucas' body couldn't fight anymore & he went to be with the King of Kings in Heaven.

On March 19, 2000 our little "Hero" was cancer free & fully healed in Heaven.

http://www.caringbridge.org/visit/lucasryan

[ericasmom]

to the family of Lucas,

My name is Diane Conmy, I post on loss of an adult child. Just so you know, there are a few parents with us whose child was young at the loss. If you would like to post with us, we will support you unless you have found another forum that is serving your needs. Perhaps you found loss of an infant...just don't want you out there without others pulling you to a place to post and be heard.

My heart to you as you mourn the loss of so beautiful a Boy.

Dee

[k8smum]

I gave him permission to die . . while the whole time I was screaming inside for him to stay with us.

I am currently online at the local mall since we don't have internet at home (in the boonies right now), and I am sobbing.

Our Cait had leukemia from ages 14 -19, was never in remission for more that 9 months at a time, even her bone marrow transplant lasted 9 months and we lost her after 10 days intense chemo when her oncologist insisted on sending her home instead of keeping her in because it was Thanksgiving weekend. Her platelets crashed and she collapsed at home in the wee hours, did the ambulance thing, ER, cpr, paddles etc all while I watched.

Finally I stroked her little bald head and, like you, gave her permission to leave us while screaming as you did inside. Four years later part of me is still screaming...

Love to you,

Annie

http://caitlin-mayes.memory-of.com/

 

[k8smum]

I gave him permission to die . . while the whole time I was screaming inside for him to stay with us.

I am currently online at the local mall since we don't have internet at home (in the boonies right now), and I am sobbing.

Our Cait had leukemia from ages 14 -19, was never in remission for more that 9 months at a time, even her bone marrow transplant lasted 9 months and we lost her after 10 days intense chemo when her oncologist insisted on sending her home instead of keeping her in because it was Thanksgiving weekend. Her platelets crashed and she collapsed at home in the wee hours, did the ambulance thing, ER, cpr, paddles etc all while I watched.

Finally I stroked her little bald head and, like you, gave her permission to leave us while screaming as you did inside. Four years later part of me is still screaming...

Love to you,

Annie

http://caitlin-mayes.memory-of.com/

 

[mikesmomrs]

Giving our child permission to leave us is something a parent should never, ever have to do...we told our son, Mike, on October 14, 2006 that it was okay for him to go...it was the most difficult thing I've ever had to do in my entire life...after a 17 month battle with brain cancer, it was his time to leave, and find peace and freedom from all that he had gone through...but I thank God that we found the strength to do this and surround him with love as he left us.

Many of us have had to do this, and many of us have gotten the dreaded "phone call,"  and not been there---either way, the result is the same---our child passed on before us, and this is just not natural, and the pain and sorrow associated with this loss is with us forever...our lives reflect that now, and always will, and yes, the screaming inside lasts forever, also. 

Our comfort now comes in knowing they are no longer in pain of any kind, that they are flying free and no worries ever enter their minds or hearts.  We will be with them again...in a blink for them, though it will be much longer for us. 

love and peace,  carol  mikesmomrs