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Variance in the Statistics…

On January 23, 2018 by

Originally posted on the closed Facebook page: Bereaved Parents of Childhood Cancer

My daughter, 7th grade, was working on her advanced English class presentation on a “world problem”. She chose childhood cancer. She was worried about how her classmates would receive her, as one of her “friends” was heard saying that Carly makes too big of a deal about her brother’s death. I encouraged her to make her project what she wanted it to be because most of those kids will learn something from her. It may even spark someone to be interested in the subject. She included lots of statistics and pictures of her brother, his port and explained how that worked. When she got to trying to show the “problem”, we pulled out BJ’s death certificate. She hadn’t seen it before. I showed her the lines for cause of death. BJ had Acute Lymphoblastic Leukemia. His death certificate, line 1 reads cardiorespiratory failure. Line 2 is Sepsis. I explained how the statistics are not accurate if they are pulling cause of death from line 1, or even line 2.

So anyway… This got me thinking…What was your child’s cancer, and what was determined as cause of death? Does anyone in this group have it match to your child’s cancer diagnosis? Does anyone know for sure which category the death is attributed to? I just don’t believe that ALL has a cure rate as high as it’s reported.

 

Responses: (Names were removed, and replaced with XXXXX)

XXXXX We never did a report. We asked if we should but treatment was failing and it was causing him more harm then good. Scans showed progression rapidly growing and he was quickly declining. Dr gave us less than a week. He passed away at home with us, we knew it was happening. The death certificate states cardiorespiratory failure. Even though we know it should say cancer. But the cancer caused the cardiorespiratory failure. His heart and lungs failed. It’s just crazy. I hate this.

XXXXX Her tumor was her cause of death. It put pressure on her lungs and heart and she eventually couldn’t breathe and her heart gave out from being over worked. Her actual cause of death reads: metastasized Rhabdoid Tumor.

She has Malignant Rhabdoid Tumor of the Kidney.

XXXXX I believe Chayton’s said the same. Only if the brain. We never had an autopsy. After all he’d been through, we were done with the cutting on him.

XXXXX Same. The tumor was covering left lung and pushing into heart. His body was just overworked. The cause is synovial sarcoma.

XXXXX, XXXXX Yes we felt the same didnt want to like as seems inappropriate

Michelle Griffin Love I would have never consented to an autopsy. I was only asking about the cause of death on the certificate. I’m so sorry that any of our children had to go through this hell.

XXXXX Michelle, my heart aches for any family that went through what any of us did!

Michelle Griffin Love XXXXX , mine too. It is so senseless, and it just makes me so angry!

XXXXX Addison had DIPG and I believe that her death certificate says “Pontine Glioma”

XXXXX Haleys says anaplastic astrocytoma as cause of death

XXXXX Jessi’s said respiratory failure second to liver failure as a result of Neuroblastoma IV

XXXXXUs too

XXXXX My daughter’s lists hydrocephalus as the primary cause, and chordoma secondary. I had the same thoughts as you regarding accurate reporting and statistics. I even contested some but they would not budge. Getting that document was like a double punch in the gut. One because it signifies her absence and two because, in my opinion, it doesn’t place the blame where it belongs. F*ck cancer.

Michelle Griffin Love Totally agree XXXXX. F*uck cancer. Double punch, and then if it was not coded so that the reported statistics are accurate, it just perpetuates the blindness that people have to childhood cancer.

XXXXX Liver failure…. but 2ndary to cancer

XXXXX LangerHans cell histiocytosis.
liver failure that caused internal hemorrhage. I forget the medical terminology

XXXXX My daughter had Glioblastoma and it’s listed as her cause of death. Nothing else was listed.

XXXXX my son’s says acute lymphoblasic leukaemia then neutrophinic sepsis.
the problem is if you look into it people very rarely die from the actual cancer the cause is usually a secondary infection. They wouldn’t have got it if not for the cancer but the thing that actually caused their death is something else. my son didn’t have any leukaemia in his body he was about to start the maintenance stage which is to keep the leaukimia gone but due to cemo not just killing the bad cells but the good as well it opened his body up to other things x

XXXXX I agree! In a lot of my personal research, kid’s cancer type isn’t what is included in the death rate numbers. And therefore, death rates are MUCH higher for all sorts of childhood cancers than documented. Also..I’ve been told that if a child surpasses the 5 year survival mark and still dies afterwards–their cause of death is never listed as their cancer anymore. Sigh..all of this stuff just infuriates me!! There is NOT an accurate picture of how much of an epidemic childhood cancer is!

Michelle Griffin Love I, too, have heard many people say that the stats aren’t right XXXXX. It’s a tough question to ask, but I thought maybe there would be some in this group that would be willing to answer. Just looking through the comments, it looks like maybe half of the cause of death is the cancer they had. That infuriates me too. It’s not rare…it’s under-reported.

XXXXX Definitely! I agree. It is definitely under-resported. . 

XXXXX Sophia had at/rt brain tumor but her cause of death said heart failure.

XXXXX My daughter had ALL at age 4. Due to treatments, 10 years later, brain cancer! The original cause should say leukemia but brain cancer is on her death certificate.

Michelle Griffin Love I know another mom who’s daughter had the same scenario XXXXX. So sorry.

XXXXX Michelle Griffin Love seems to happen way to often! I follow many leukemia children’s stories and it seems as though 90% either relapse,suffer many disabilities or end up with some other form of cancer.. the treatments suck!!

Michelle Griffin Love I have seen it too and it makes me so angry!!!

XXXXX I insisted his cause of death have cancer.

XXXXX I wish I had known we could have added cancer to the certificate. Although at the time I was in a haze and could barely string a sentence.

Michelle Griffin Love I also didn’t have any strength to insist on anything. 💔💔

XXXXX Valeria had ALL leukemia. Unfortunately she passed from complications of a second allo transplant. Valeria had so much chemo and failed car-t treatments also.
Missing her everyday 💕

Michelle Griffin Love So so sorry XXXXX. Sounds like Valeria went through every possible attempt at a cure as well. My son had unsuccessful CAR-T too. He was the 2nd to do the clinical study at Duke Hospital. The first patient is still alive, but she relapsed 6 months after the CAR-T, and had to have a BMT.

XXXXX We did cart 19 at Chop and then we went for cart 22 at NIH . It was a very difficult time as you very well know. I’m so sorry about your son😟. I guess we will forever grieve our lovely children.

Michelle Griffin Love Yes… forever. 💔

XXXXX My child had Acute Lymphoblastic Leukemia with MLL mixed lineage line. His death certificate says liver failure.

XXXXX My daughter had MLL too.

XXXXX in my son’s case “malignant neoplasms of bone and articulated cartilage”….no where does it state that he died of Ewing’s Sarcoma and complications thereof.

XXXXX I think you are on something. Never thought about the cause of dead is misleading.
My estimate of cure is 30 in Argentina, 50 here. Based on 5 years knowing patients.

XXXXX My daughter’s certificate says Burkitt’s lymphoma…. which is wrong, she had Burkitt’s leukemia. I never had the energy to correct it.

XXXXX Eva’s certificate does read DIPG. As she had pneumonia I wondered what they would put. For statistic reasons I’m glad they put DIPG as the cause of death.

XXXXX My son’s says respiratory failure. He had DIPG too. I wonder what got reported for statistics purposes

XXXXX There was a post on the DIPG group recently. It must really affect the statistics. Obviously at the time I didn’t ask then recently when I went back to look I was actually relieved it said DIPG.
XXXXX I wonder now. At the time I didn’t really think of it. Of course he had respiratory failure due to DIPG which is why he died but DIPG was the reason he no longer could breathe on his own so you would think cancer would be the cause of death
XXXXX It DEFINITELY affects statistics!!!

XXXXX I didn’t ever imagine they’d put anything else! Seems strange because obviously everything happened because of DIPG

Michelle Griffin Love I agree XXXXX. I think it should list the cancer as the cause. If it weren’t for that cancer, they would be healthy kids. 💔

XXXXX Sam had ALL – Ph+. He was in remission, but his treatments were the cause of death. His death certificate lists kidney and liver failure; sepsis.

XXXXX My daughter’s death is labeled heart failure

XXXXX My daughter’s death certificate says:
(A) Intracranial Hypertension
(B) Medulloblastoma
Medulloblastoma is a brain cancer. And she passed away as a result off too much fluid in her brain because the cancer blocked the normal fluid flow.

XXXXX The statistics use all three – the 3rd is considered the underlying cause. Otherwise no one would die from cancer.

Michelle Griffin Love Wouldn’t there be a main ‘bucket’ that it falls into? If they use all 3, that would skew the totals. Several commented that the certificates didn’t list the cancer at all….so that couldn’t have been counted the way it should have been.
XXXXX My sons just says neuroblastoma
XXXXX My daughter had DIPG and I think hers says “Diffuse Midline Glioma.”
XXXXXWhen Caleb died, the palliative care doc asked me if I wanted it to say cardio respiratory failure (his immediate cause) or his cancer. I chose his for it to say “metastatic medulloblastoma”. I wanted his death to count towards the statistical numbers. If that makes sense.
Michelle Griffin Love Totally makes sense XXXXX. I would have said the same if I had been asked.
XXXXX My son had sPNET (brain cancer) and his death certificate lists brain cancer as the cause of death. But I know that isn’t common
XXXXX Yes the rates are skewed. Caylee was listed as pulmonary hemorrhage.The aml didn’t directly cause her death so it wasn’t listed, although the chemo did but it wouldn’t be listed as cause of death. I think it depends too if they are on hospice, maybe that would say the cancer
Michelle Griffin Love BJ was on hospice care. Just seems by reading all the comments here, that there is no real standard being used across the board. 
XXXXX I don’t have my son’s in front of me.. I’m not positive his cancer is listed ( Anaplastic Astrocytoma), but the COD listed is intracranial pressure.
XXXXX Line 1 says respiratory failure
Line 2 says end stage neuroblastoma
XXXXX My sons was complications of Osteosarcoma. I wanted to comment on the bravery and good your daughter is doing by sharing her brother n info on pediatric cancer. My first knowledge of a port was when my child was getting one. Awareness to childhood cancer is key. She might even influence kids to be oncologist, researchers or sadly a classmate or sibling may hear the dreadful words. Kudos to her!
Michelle Griffin Love  Thank you XXXXX. She is actually planning to be an Integrative Physician one day. I can’t wait to see the spectacular work she’s headed for. 
XXXXX Michelle Griffin Love  months ago!
Michelle Griffin Love 💔 so hard to read that. BJ left us in March 2016, 2 days after his 15th birthday. So just a few months before your son. 💔

XXXXX Georgia was diagnosed (3 years ago today 😭💔🎗) with AML.

Her death certificate states AML. At death she was infection free (finally) after having clostridium difficile colitis, rotavirus, adenovirus and various other infections for 3 long months in isolation. 😢

She fought that all but the cancer was the killer and at least that was recorded

Michelle Griffin Love So sorry XXXXX . Thank you for responding on this very tough day. 💔
XXXXX My daughter had ALL also and her death certificate says pulmonary hemmorage on line 1 and acute lymphoblastic leukemia on line 2. Autopsy told us what caused the hemmorage which was mucormycosis. A very aggressive fungal infection. We did an autopsy because she passed very suddenly and unexpected (she was fine, recovering from her last round of chemo getting ready to start maintenance and then gone 3 days late)
Michelle Griffin Love 💔 fungal infections are hard to treat with weakened immune system, and you don’t even know they’re there until something happens. BJ had a fungal infection caused by aspergillus. So sorry XXXXX .
XXXXX Michelle Griffin Love yes we didn’t know it was fungal until the autopsy. She declined so quickly we didn’t even have a chance to realize what was happening.
Michelle Griffin Love  XXXXX , if I hadn’t insisted on a CT, we would have had a different outcome at that point. The nighttime resident wanted to throw another chest x-ray at the problem, and I knew there was something going on in his lungs, not in his ribs.
XXXXX Michelle Griffin Love i tried to get a CT done as well but the protocol was to wait until the fifth day of fever first. I knew it was something more. The only thing that helps me from feeling too much guilt for not pushing harder is that her fungal infection was rare and the anti-fungal used to treat it is only used if they know for sure it’s mucormycosis because it is really hard on the liver and while the CT would show fungal it wouldn’t show which type. It takes 21 days to get a positive culture for her fungal and she died 5 days after we brought her in with a fever.
Michelle Griffin Love  XXXXX  I remember that as well. They did a broncoscopy to flush out spores so they could start the testing. They assumed that it was aspergillus, and started him on the anti-fungal. It was a balancing act of treating the fungal infection or fighting the leukemia. By fighting one, the other can get out of hand. What trauma.
XXXXX Michelle Griffin Love definitely traumatic.
XXXXX My 10 yr old daughter also passed from ALL very suddenly and unexpectedly. I haven’t looked to see what they wrote but I was told possibly a brain bleed and sepsis. She was in for 2 weeks on an anti fungal and nothing seemed to get her fever down. Still shocked after almost 7 years. Definitely not a 90-95% survival rate. 1 in 5 children pass from cancer and to think Claire was that 1 and It being ALL.
Michelle Griffin Love XXXXX  Hugs 
XXXXX Our son had acute lymphoblastic leukemia. His #1 was multiple organ failure, #2 was sepsis and #3 was ALL. As much as I hate to look at that thing, I am glad that they at least put ALL on there . We all know that cancer is what took our children. They should count as such!
Michelle Griffin Love I agree XXXXX . That paper is tough to look at. Thank you for responding. 
XXXXX I completely agree XXXXX
XXXXX Camryn had AML and the 1. On her death certificate is liver failure. 2 is something worth he elevated ammonia levels and 3 is AML. Cancer didn’t kill her, the treatment did with all the fluids pumped into her her liver couldn’t take it.
XXXXX My son also had liver failure and high ammonia levels. Treatment also caused this his liver to fail.
XXXXX Yeah she had no cancer as her bone marrow would not even recover. She was in the hospital most of the 5 months she fought. She was only home for about a total of 3 weeks. It’s awful watching them go through liver failure. Hugs to you.
XXXXX I spoke to a nurse practitioner recently about this and she said it had something to do with the rules of writing out death certificates and that it had to be the immediate cause as opposed to what led up to that…does not seem right. As we all know Cancer was the beginning of the end and the cause of the end.
XXXXX I’ve heard this too. Which is such bullshit imho, bc most people die bc their heart stops beating. Cardiopulmonary arrest. So yeah, DUH, that’s what caused my son’s death, but that’s not what killed him. 💔
Michelle Griffin Love I agree. If it weren’t for leukemia, my son would be here. He was never a sick kid. The lies surrounding the deaths of all these kids makes me sick.
XXXXX Though Ben’s death cert (and my dad’s) both say to list the immediate cause, then what caused that, then what caused that. Maybe different states have different rules? Both my dad and son died in California. So Ben’s says cardiopulmonary arrest (caused by) lung metastasis (caused by) rhabdoid tumor.
XXXXX My daughter had sPNET but her death certificate says Glioblastoma brain cancer instead.
XXXXX My Gabriel had ALL as well. On his death certificate, it says “natural causes”. There is a note that says leukemia. But when I saw natural causes, my heart was hurt. All I could think was that there was nothing natural about it. And it was the cancer as we were out of options. We were never asked anything.
Michelle Griffin Love That is just not right XXXXX . You’re right. There’s nothing natural about it – at all.
XXXXX  Steven Rodriguez had atrt
Line 1 herniation of brain stem
Line 2 intracranial bleed
Line 3 atypical teratoid rhabdoid tumor of the brain.
My gut just felt queezy ..fuck cancer
XXXXX I shouldn’t have looked again. Damn rabbit hole 😭
Michelle Griffin Love I’m sorry XXXXX . 💔💔
XXXXX  sending you love….put it away and do not look again…..xoxoxo
XXXXX So, did y’all have autopsies done to get specific cause of death? I haven’t seen my sons certificate yet.
XXXXX Don’t look at it
XXXXX XXXXX  is it terrible? How do they know the cause of death?
XXXXX We didn’t have an autopsy done. His hospice doctor provided the info needed for the county.
XXXXX XXXXX  it just knocks you down seeing it. I should never have looked ..too many memories and ptsd… opening it back up today for this post rocked me to the core again…
XXXXX XXXXX  I’m sorry. My husband is picking ours up from the funeral home later today. 😢
XXXXX XXXXX… put it away…. … we live our horror everyday. And most times its wrong in some way which just adds pain. It won’t bring them back. If you have any sort of way you rationalized it in your head…. go with that ..seeing the certificate seems to make it harder in writing … another thing no parent should ever have to have .
XXXXX We did not have an autopsy done. But Ben had a CT a few days before he died which revealed that he had no airspace left in his lungs (due to tumor growth) and so there was nothing they could do and he would die soon.
XXXXX We had an autopsy done. I wanted answers. Livy had Nueroblastoma, but had been cancer free (NED) for 5 months. She had a horrible reaction to the chemo in stem cell transplant (3 months befor her death). She was slowly getting better when she developed fluid around her heart 4 days befor she passed. She was struggling to breath and we all thought once the fluid was drained she’d breath better. Less than 24hrs after the drain she was gone  They tried to intubate her to help her breath but just as they laid her back her lungs began hemorrhaging. With the 25 page autopsy we finally had answers to so many questions. Every health problems she was battling was from chemo toxicity. Even the “ICU psychosis” they though she had was found to be altered white matter in her brain from the chemo that wasn’t suppose to be able to cross the brain barrier. My poor girl was a hot mess all because of the chemo.
Michelle Griffin Love There was no autopsy on my son XXXXX, I was referring to his death certificate, and how the cause is written. All the statistics on childhood cancer deaths come from how they ‘categorize’ the cause. I personally think that the reported numbers of children beating their cancer are not correct. I think that many more children die from cancer than what is reported.
XXXXX Michelle Griffin Love really interesting. I hadn’t thought of this.
XXXXX I had to fill out autopsy forms with her doctor to remove tumor for two labs. (It was on her list of wishes after death). No autopsy was needed as her death was “attended” by hospice, if she had died at home not on hospice we would have needed one for insurance, my husband’s employer has policies on all the children of it’s employees and they handled most of dealing with that so we were lucky.
XXXXX Noah’s says Epithelioid Sarcoma. The only reason I looked at it was to make sure that’s what it said. ES is so rare it was important. I was prepared to fight to have it changed if that wasn’t what it said.
XXXXX Maggie had malignant rhabdoid tumors/epithelioid sarcomas
Michelle Griffin Love I agree XXXXX, it needs to be listed as the cancer.
XXXXX XXXXX if you don’t mind me asking where was her tumor located?
XXXXX Ours says catastrophic brain bleed, secondary was medulloblastoma….
XXXXX My son’s says:
1. cardiopulmonary arrest
2. lung metastasis
3. rhabdoid tumor
Which I’m glad for. I made sure when we received it that it said cancer (basically – he had MRT, a malignant rhabdoid tumor). If it hadn’t I was prepared to go back to his oncologists and make them change it. Bc cancer is what killed him.Yeah, I know, what really killed him is that he had no airspace left to breathe, so his heart stopped. But the only reason that happened was cancer, SO.

XXXXX My sons death certificate is inaccurate also. He died of metastatic osteosarcoma but the certificate says infection.
XXXXX Wow. I don’t even know. Don’t recall seeing a death certificate.
XXXXX The cure rate is for 5 years cancer free…Not really a “cure”. : www.cancer.net -“However, researchers usually give cancer statistics as a 5-year relative survival rate. The rate describes the percentage of people with cancer who will be alive 5 years after diagnosis. It does not count those who die from other diseases. “
XXXXX My son’s cause of death was multilobar pneumonia and toxic epidermal necrosis. The later had only been diagnosed at during the autopsy…Result of High Dose chemo with stem cell rescue.
XXXXX My son had brain cancer and his death certificate lists the following
1 – Acute respiratory failure
2 – Cardiac Arrest
3- Brain cancer
💔💔🎗
XXXXX I’ve not got the death certificate yet. So we shall see what they place
XXXXX I also want to add your daughter is amazing let people know this does happen and it might help one person that wants to make a difference with cancer later on
Michelle Griffin Love Thank you XXXXX  I do believe it is the kids today that will make the difference. They’re growing up losing their friends and classmates, and they are already more ‘aware’ than I was in middle school about childhood cancer. Thank you for your kind response. 
XXXXX Tiffany my oldest daughter is in a broadcasting class. She is doing a documentary on Haley my 13 year old who passed from ALL. She is talking about how cancer affects the family and friends. I will have to look on her death certificate. I know ALL was mentioned but wasn’t the main cause of death.
XXXXX Intraparenchymal hematoma septic shock and pre b cell ALL were listed as cause of death
Michelle Griffin Love Kudos to Tiffany for that documentary!  Hugs…
XXXXX Thank u. I think both siblings are brave. To be able to talk about this subject is amazing and shows so much maturity
XXXXX Nicks cause of death was refractory T-Cell Leukemia -2 Months. T-Cell Lymphoma -6 Months.🎗🎗🎗
XXXXX My daughter had a low grade glioma. I haven’t looked at her death certificate yet. I will because now I am curious. And will report back 😞
XXXXX I didn’t have courage to get the death certificate so idk what it says. My daughter was doing well. She suddenly and unexpectedly died. Literally 10 seconds after her dad told her he was going to get her brush and fix her hair (I was at work) I talked to her 12 minutes before this. Literally she was talking to her dad then bam… gone 😭😭😭😭😭 We as well as doctors suspect blood clot but we refused an autopsy. It wouldn’t bring her back and we were such a mess (still am!) I hate we have to endure this excruciating pain 😓😓😓😓😓
Michelle Griffin Love 😥💔😥💔 Hugs to you XXXXX
XXXXX Michelle Griffin Love Thank you! ❤ I’m in shock and still can’t believe we got her thru 23 surgeries, 2 years of chemotherapy & hundreds of hospitalizations and she was doing so well to have a stupid blood clot take her 😭😭😭😭 Seriously, seconds before this she was talking and fine. We didn’t suspect anything. 😥 That’s what led the doctors to think a blood clot because it happened so fast. 😢😢 They could never regain her pulse. I don’t know how to go on. I’m barely functioning. I miss my best friend sooooo much it takes my breathe away 😭😭😭
Michelle Griffin Love XXXXX, there are really no words to say that would be of any good, except to say that my heart is with you, understands that pain, and I’m sending you love. 💔💔💔
XXXXX Michelle Griffin Love thank you! Sorry we both have to travel this awful path 💔😓
XXXXX You have a very good point! I never thought of it this way. We were told ALL has a 96% cure rate, which still makes me mad. My son’s certificate says brain stem stroke.
Michelle Griffin Love XXXXX, that is exactly what I was told the day that BJ was first diagnosed! “This cancer is curable, curable, curable!” After BJ relapsed on active treatment, he was gone 9 months later. 💔
XXXXX My son’s type of cancer is listed as second. First, is the blockage of his airway with an aggressive tumor that I was told probably grew in a 24 hour period.
His tumor was only visible by MRI. It blocked his airway and even though chest compressions started immediately it was 20 minutes before we could get air into him again. Too long, he had brain hemorrhaged by then and his organs started shutting down.
Michelle Griffin Love 💔💔💔 😥 I just have no words.

XXXXX Michelle thank you. The doctors stood by his bedside and cried as well. They just kept saying this is every parents worst nightmare to have their child die. I haven’t decided if it’s a blessing or curse to not even know your son has cancer until it takes his life.

I had wished that we had the chance to beat it but then I see the hell so many kids go through trying to beat it. In the end, I just miss him. I know you completely understand.

Michelle Griffin Love I do. My son had his 15th birthday, and passed away 2 days later. We were so close and I miss him terribly.
XXXXX 😭😭😭😭😭😭😭😭
XXXXX Jonathan’s cause of death is listed as respiratory failure. I also feel statistics are skewed because of the causes of death that are used.
XXXXX My son Nick died from metastatic osteosarcoma. His death certificate states Osteosarcoma. What a great point to make….you’re right! Every death certificate should state the cancer diagnosis, any other cause should be secondary!
XXXXX Fwiw: I applaud Carly for her courage to do a report like this in spite of peer pressure to be silent regarding her brother. That shows true grace, maturity, and strength that is rare in children her age… but perhaps it stems partly from being confronted with horrific realities far too early in her young life. It seems that many of our surviving children possess this uncharacteristic strength. I’m proud of her. Perhaps for her next report, she might want to touch on something like Artrese Ellis’ daughter, about how pediatric cancer affects the entire family and social network. We have been blessed to be able to participate in an oncology camp though our son has passed (and was an infant), because they offer sibling and family programs- because they recognize that siblings and parents (the family unit as a whole) need support too. BJ existed. He was real, and he was her brother, and he went through something awful, and she was part of that. It’s too bad that “friend” can’t recognize that and empathize instead of making snide remarks.
Michelle Griffin Love Thank you for saying this Erin. BJ and Carly went to a similar camp (for patients and their sibling) together for 2 years after his diagnosis. He relapsed just before camp the next year so they couldn’t go because BJ was too sick. He passed away the next year, in March 2016, and Carly went to camp without him that year. She was 11 years old. It was hard and she wanted to be home with me, but she stuck it out and stayed the whole week. She went again last year and although it still stings that she’s there without him, that’s her “people” and she doesn’t want to lose touch with them. You’re right…the siblings are uncharacteristically tough and have great maturity after witnessing such traumatic events. I’m so very proud of my girl… Just 13 years old and full of grace. 💕
XXXXX U ladies are both amazing mothers
XXXXX XXXXX you are as well, mama. Don’t you forget it. 💝
Michelle Griffin Love I agree! You both are amazing and strong!❤
XXXXX Thank u XXXXX
XXXXX Its an angelversary…
XXXXX I MADE them put Retinoblastoma as the cause of death on Damian’s.
XXXXX I never thought to look! Our son passed from T cell ALL.
XXXXX Oh my goodness I’m so glad she chose this!!!! I agree 100%! Statistics are
Not correct because they don’t list their cancer as the cause! My daughter had alveolar rhabdomyosarcoma but her death certificate says respiratory arrest as the cause. 😤
XXXXX Respiratory failure.
XXXXX I have to check. It better say cancer.
XXXXX I have to take a look at Joey’s. I know from my middle son, who did not die from Cancer, but from unknown reasons (believed to be a side effect of the Xarelto he was taking for a dvt) , it stated cardio-respiratory failure as well.
Michelle Griffin Love Oh Ellen. 💔💔💔
XXXXX Ours states the same as diagnosis. Metastatic Chordoma of the Clivus.
XXXXX What a brave girl Carly is 💗 ….. may I ask what age group is 7th Grade ? X
In relation to the death certificate – coming up to 4 years on and I haven’t looked at it yet 😓 but you make an excellent point .
Hugs from Ireland 🇮🇪
Michelle Griffin Love Hi from North Carolina, Edel. 7th grade is 12-13 years old. Carly was 11 when she watched her brother die. 💔
I don’t blame you for not looking at it. I didn’t want to look at BJ’s either but it seems that there’s a force in me that pushes me to do everything hard, even when I don’t want to. I sometimes think I torture myself just to really feel the pain, so I feel pain like my son did. Big hugs ❤
XXXXX I understand that Michelle. Your daughter is amazing , I really feel siblings have such a tough time, we know how hard it is with adults that we encounter who can’t deal with our pain. Aisling ( our youngest ) was 13 when her 17 yr old brother Marc was diagnosed and I recall a very wise teacher telling me Aisling didn’t have the language to articulate what she was feeling . Please tell Carly I think she is wonderful 💗💗 and her brother is no doubt super proud 💔
XXXXX Michelle Griffin Love we took Marc to Levine in Charlotte NC for some consults during his fight . X
Michelle Griffin Love Levine was our home for a long time 💕. Thank you for your kindness Edel. Has Aisling been able to talk about it now that she’s a bit older?
XXXXX Michelle Griffin Love yes she does – Marc has 3 siblings and it’s heartbreaking watching them navigate their grief , they miss him so much . The order of my children is girl(Aoife) , boy(Marc ) , boy(Neil), girl(Aisling).
My eldest daughter who is now 26 has a deep sadness within her and she finds it’s very difficult to talk. X
XXXXX My son had AML and his death certificate said same thing – cause of death due to cardio which is BS! Cancer killed him!
XXXXX we asked our hospice nurse what the death certificate would say, she made sure it said AML for us. I hate the statistics- yes, their hearts stop. Yes, their breathing ceases. Yes, cancer caused both of those things to occur at the age of 3 years and 8 days. Children are not supposed to dies of the aforementioned causes.
XXXXX This is so interesting. We always felt like the statistics were wrong. Our daughter had ALL, then developed AML. Her death certificate says one of those, I don’t remember which one.
XXXXX My daughter had ALL leukemia
Line 1 says Sepsis
Line 2 says her leukemia.
XXXXX My daughter had Ewing’s sarcoma and neither cause of death was Ewings or even malignancy. Just info about respiratory something (it had metasized to her lungs as Ewings & most other solid tumors do if they metastasize) and I can’t recall the 2nd cause of death but it was another side effect of the tumors in her lungs! I kept intending to contact the pedi onc who was on call and called her time of death but grieving, my other child & life in general have taken precedence. It’s been 17 mths so thanks for reminding me. Hopefully he can still correct it.
Michelle Griffin Love I’m curious to know if you’ll be able to make that change. Hugs to you!💕

XXXXX My son’s death certificate arrived in an envelope from the funeral home just a few weeks after he passed. I opened it unsuspectedly and was expecting an invoice, but boom it was his death certificate. I can remember exactly where I was standing and completely knocked me in the stomach.

I was so scared that respiratory failure would be listed as that was the literal cause of death and it was traumatizing. His said AML on the first line and then something about a blood infection on the second.

We received the autopsy report 6 months after his death and it showed that he was in multiple organ failure (henmoraging in his lungs caused by the cancer cells dying (He passed just 21 days into induction chemo), VOD in his liver, and his kidneys had completely shut down as a result of the infection.

Michelle Griffin Love 💔 💔💔 comments like yours just tears at my heart for what your child went through.
XXXXX Michelle Griffin Love – he was highly sedated and the hospital did a really good job with pain management and medications at the end to relieve distress. With the passing of time, we find some comfort in that we don’t think he was in much pain at the end.
Michelle Griffin Love Big hugs Kelly
XXXXX Caylee was on her 2nd induction and lung hemorrhage, she went fast. Dx to death was 62 days. AML. TOTALLY GET IT. Hugs momma
XXXXX XXXXX – AML also. 4 weeks exactly from hospital admittance to the end.
XXXXXMay the love you shared and still share settle into your heart and under your feet and infuse your whole being. May we all remember the love.
Michelle Griffin Love Yes ❤❤❤ thank you for this Melinda
XXXXX We do not know what my sons certificate says but this angers me if stats are not correct. He passed from T Cell ALL. I don’t think I can look. I just filed it away after it came. Hate the finality. He was just starting 7th grade when he passed in 2014. Your daughter is doing a good thing .
Michelle Griffin Love I totally understand not wanting to look. I think I lost another piece of myself when BJ’s came in. Just from the comments here, it seems to me that the stats are wrong. I’m so sorry any of us are missing our kids
XXXXX Michelle Griffin Love me too I still can’t wrap my mind around that in this day and age this is happening. As we all know I could go on and on 😢. Hugs to all.
XXXXX My son’s has no cause of death… it’s blank.💔💔💔
Michelle Griffin Love I’m shocked by this Carolyn. 💔
XXXXX Michelle Griffin Love He has what they called “miraculously successful “ surgery, we were told “We got it all “ and”This kid has years of life ahead of him”. My boy was dead 46 hours later. Not exactly sure what happened. We just know his heart started to fail. It was a loud, violent death I can’t erase from my mind.💔💔💔💔
Michelle Griffin Love I’m so sorry XXXXX. I know you’ll never erase that from your mind. It’s horrible to watch your son die a violent death. Mine did as well. There was another peaceful about it. Hugs hugs hugs 💔💔💔
XXXXX Michelle Griffin Love Hugs, strength and grace to you, too…💚💔
XXXXX I also am concerned the stats are not accurate.
My son’s certificate does show Testicular cancer, but they asked me if I wanted liver failure or another complication instead.
I said Testicular cancer. I should not have had a choice.
Michelle Griffin Love If COD had a standard way of reporting, I wouldn’t think you would have been asked. This just makes things even more clear. 💔
XXXXX They said technically, it was the complications…
I’m like “he would not have had those complications without the cancer”.
We had a long talk… apparently (in our area), a lot of the families want the complication — he said one family said “cancer didn’t win this fight, so put (complication)”
Michelle Griffin Love Oh my. 💔
XXXXX Michelle,
Kudos to your daughter for doing the report and helping other kids. A friend shared how she went to let the school know (of a death of the kids father), And the principal shared this is over 30 students impacted this year by loss of JUST parent or sibling. That doesn’t include friends, other family. The kids may tease your daughter today but sadly one will have walked this path or soon will. Big hugs and good job to you mom!!!
Michelle Griffin Love Thank you Kerry. She’s incredibly strong and mature. She presented her project even though that ‘friend’ was in the classroom watching. I’m very proud of the person she is already at 13 years old. Thank you for your kind words ❤
XXXXX My son had GBM that metastasize to every bone in his body his death certificate said brain Hemorrhage and high grade glioma
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I'm a mom with a heart split between my child on earth and my child in heaven.