General Discussion

colorado_ufo

(6,256 posts)

61. My heartfelt sympathy and empathy.

Thu Oct 5, 2017, 07:35 PM

Oct 2017

This year my son, who will be 43 this month, was diagnosed with an extremely rare cancer in its hereditary form, at State IVA. He is the "de novo" presentation, which means he is the first one in line to have it. My husband and I were both tested, as was his sister. He has three children, ages 2, 5, and 7 years old. The two year old and the seven year old inherited the gene, and they both need to have preventive thyroidectomies.

We have dealt with a massive surgery, radiation, and trying to keep my son's nutrition up. There is no effective chemotherapy. He is, however doing well overall. We pray that we caught it all in time.

The little ones will be going to specialists for their surgeries.

I am so very sorry for your goddaughter's precious little girl! By all means, contact St. Jude's. Also, explore clinical trials and off label drugs. Keep trying! And keep praying.

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I am destroyed. My precious angel is dying. [View all] Tanuki Oct 2017 OP

... spanone Oct 2017 #1

Thank you Tanuki Oct 2017 #94

... Eliot Rosewater Oct 2017 #2

..... Tanuki Oct 2017 #95

There are no words of consolation DFW Oct 2017 #3

Thank you. Tanuki Oct 2017 #96

With you Tanuki lunasun Oct 2017 #4

Thanks Tanuki Oct 2017 #97

I'm so very sorry. herding cats Oct 2017 #5

Thanks for your encouraging words Tanuki Oct 2017 #98

I'm so sorry! My goddaughter's little girl is five, and I love her beyond reason. Glorfindel Oct 2017 #6

Thank you for sharing my hope Tanuki Oct 2017 #99

I will pray for you and your angel. I promise. tymorial Oct 2017 #7

Thank you. I deeply appreciate your prayers. Tanuki Oct 2017 #100

Very sorry and fuck that cancer JI7 Oct 2017 #8

Indeed. Nobody suspected anything until she started complaining of double vision. Tanuki Oct 2017 #102

I don't even know what to say. Iggo Oct 2017 #9

That's ok. It is beyond words. I know you care and that means a lot. Tanuki Oct 2017 #103

No words B2G Oct 2017 #10

Thanks for this. Tanuki Oct 2017 #104

I'm so sorry. I hope she is able to recover, and if not, that her ending is peaceful and Hun Joro Oct 2017 #11

Thank you. She is loved and cherished and will be all her days, whether those days Tanuki Oct 2017 #105

Can I ask what her first name is? B2G Oct 2017 #12

Check your PM Tanuki Oct 2017 #19

Get her to St. Jude's nocoincidences Oct 2017 #13

She lives in a city with an outstanding pediatric oncology program that is a research partner Tanuki Oct 2017 #23

Maybe it is part of this clinical trial mentioned by Lurie Children's Hospital researchers? Donkees Oct 2017 #70

That is intriguing, and although they don't live in Chicago, I think some of the trials Tanuki Oct 2017 #106

Yes, the research center that was mentioned seems to be the main hub of this discovery ... Donkees Oct 2017 #209

Oh, how sad. I think that's the disease little Chad Carr died of. LisaM Oct 2017 #14

Thank you. I have learned in the past 48 hours that Neil Armstrong Tanuki Oct 2017 #107

... JDC Oct 2017 #15

Your anger is justified and one way to fight back against this horrible disease. Frustratedlady Oct 2017 #16

Thank you. I am mostly just deeply sorrowful. Then I remembered Tanuki Oct 2017 #109

I'm so sorry wryter2000 Oct 2017 #17

Thank you! Tanuki Oct 2017 #110

My heart goes out to you and your family deek Oct 2017 #18

Indeed. There is something about the innocence and trust that is devastating Tanuki Oct 2017 #112

All you can do Is Cereal Killer Oct 2017 #20

Her family is united in that goal Tanuki Oct 2017 #113

I will pray for you and your loving family. onecent Oct 2017 #21

Thank you. Check PM for her name. Tanuki Oct 2017 #26

Thank you! onecent Oct 2017 #52

OMG lillypaddle Oct 2017 #22

Thank you for understanding. It is actually helpful to feel the compassion from you and others here Tanuki Oct 2017 #114

Have you contacted St. Jude Hospital? Perseus Oct 2017 #24

Thank you. See #23 above Tanuki Oct 2017 #27

Thank you for your kind thoughts. Please see #23 above Tanuki Oct 2017 #115

I am so very sorry. TNNurse Oct 2017 #25

Thank you. I am glad you won your battle! See #23 Tanuki Oct 2017 #116

I weep with you irisblue Oct 2017 #28

I appreciate your heartfelt response Tanuki Oct 2017 #117

My heart aches for you and yours elfin Oct 2017 #29

Thanks for your words of hope. I use the word "miracle" loosely.... Tanuki Oct 2017 #118

I'm so sorry. Chemisse Oct 2017 #30

Thank you. We are just at the very beginning and still reeling from the news. Tanuki Oct 2017 #119

I am so sorry for you and your family.. lisa58 Oct 2017 #31

I'm so sorry for your terrible loss renate Oct 2017 #47

Thank you for your caring reply Tanuki Oct 2017 #121

I did not know you lost a daughter. I am really sorry. Thank you for your Tanuki Oct 2017 #120

I am so very sorry. I'll pray for your darling goddaughter. pnwmom Oct 2017 #32

That means a lot to me. Tanuki Oct 2017 #122

... 2naSalit Oct 2017 #33

....... Tanuki Oct 2017 #123

... Raster Oct 2017 #34

OMG. I'm so sorry. It's just not right that children should get these grave illnesses. nt Honeycombe8 Oct 2017 #35

Isn't that the truth! Tanuki Oct 2017 #124

.............. LongTomH Oct 2017 #36

..... Tanuki Oct 2017 #125

Words straight from the heart. world wide wally Oct 2017 #37

I am so sorry to hear this Tanuki. smirkymonkey Oct 2017 #38

Thank you. I hope cures can be found for all who suffer. Tanuki Oct 2017 #126

I am so sorry Stuart G Oct 2017 #39

Thank you Tanuki Oct 2017 #127

nothing is worse mehrrh Oct 2017 #40

Everyone is coming together, even a couple of people who had a grudge against each other, Tanuki Oct 2017 #128

Im so sorry lunatica Oct 2017 #41

Oh my dear lunatica. I did not know this. I am sorry for all the grief and pain Tanuki Oct 2017 #129

make it damned good last months. pansypoo53219 Oct 2017 #42

That is the plan, in case we don't get the miracle after all Tanuki Oct 2017 #130

I prayed and will continue to pray. TexasProgresive Oct 2017 #43

Thank you so much. Knowing that people care and are sending prayers Tanuki Oct 2017 #131

Really sorry to hear this, there are no words to calm your agony .... MyNameIsKhan Oct 2017 #44

I'm so sorry renate Oct 2017 #45

Thank you. Don't worry about the words...you reached out and I know you care. Tanuki Oct 2017 #132

Devastating news. Scarsdale Oct 2017 #46

Thank you. It feels so random, like the evil inverse of winning the lottery. Tanuki Oct 2017 #134

I grieve with you gopiscrap Oct 2017 #48

Yes. She is at least fortunate in that her mom works for a major company with Tanuki Oct 2017 #136

I'm sorry this has happened. joenoodles Oct 2017 #49

Thank you for your compassion and kind thoughts. I am honored that this is your first post on DU Tanuki Oct 2017 #137

I am so sorry. murielm99 Oct 2017 #50

Thank you Tanuki Oct 2017 #138

My heart goes to you and yours. Doreen Oct 2017 #51

Thank you Tanuki Oct 2017 #139

I am in tears! I am so very sorry... how is the little girl handling this?.. samnsara Oct 2017 #53

She is not in any pain. She is wearing glasses with one thick prismatic lens to manage the double Tanuki Oct 2017 #141

So sorry to hear this Bettie Oct 2017 #54

Thank you Tanuki Oct 2017 #143

Tears... SunSeeker Oct 2017 #55

..... Tanuki Oct 2017 #144

I am so sorry, Tanuki WinstonSmith4740 Oct 2017 #56

Thank you for your message of hope and encouragement Tanuki Oct 2017 #146

very sorry to hear harumph Oct 2017 #57

Interesting. We never know where a cure will come from...who would have thought Tanuki Oct 2017 #147

When adult family are diagnosed with serious disease defacto7 Oct 2017 #58

Thank you. A breakthrough that helps her will also help many more with the same disease Tanuki Oct 2017 #148

Words can't even.. Kentonio Oct 2017 #59

Thank you. It is indeed beyond words. Tanuki Oct 2017 #149

Check into "City Of Hope", in Duarte, CA. ... aggiesal Oct 2017 #60

Thank you Tanuki Oct 2017 #150

My heartfelt sympathy and empathy. colorado_ufo Oct 2017 #61

Thank you, and best wishes for a great outcome for your son and grandchildren! Tanuki Oct 2017 #151

I'm very sorry DashOneBravo Oct 2017 #62

Thank you Tanuki Oct 2017 #152

You have every right to be angry. It's so unfair that a child has this horrible sinkingfeeling Oct 2017 #63

Thank you. It really does help to vent and have so much support and kindness Tanuki Oct 2017 #153

I am so very sorry janterry Oct 2017 #64

Check your PM Tanuki Oct 2017 #92

.... mfcorey1 Oct 2017 #65

........ peacebuzzard Oct 2017 #66

I love that image of the army of angels! Awesome beauty and power. Thank you Tanuki Oct 2017 #154

I am so sorry... Trueblue Texan Oct 2017 #67

Thank you. I really appreciate that. Tanuki Oct 2017 #155

I am so sorry. I will pray for her and her family. Ilsa Oct 2017 #68

Oh Honey. The only thing I can say is today she is alive. Tomorrow you could Maraya1969 Oct 2017 #69

Thank you. I will probably be able to make some sort of peace with this but it is still Tanuki Oct 2017 #159

I am so very sorry. nolabear Oct 2017 #71

Thank you for your kind thoughts. Tanuki Oct 2017 #160

I'm so sorry! The Velveteen Ocelot Oct 2017 #72

Thank you for caring...it really helps. Tanuki Oct 2017 #161

No words for this ms liberty Oct 2017 #73

.... Tanuki Oct 2017 #162

I am so sorry workinclasszero Oct 2017 #74

Thank you Tanuki Oct 2017 #163

breaks my heart bluestarone Oct 2017 #75

I do appreciate your empathy at this rough time Tanuki Oct 2017 #164

We will keep her in our prayers Tanuki! Docreed2003 Oct 2017 #76

Thank you kindly, Doc! Tanuki Oct 2017 #165

Deepest condolences dbackjon Oct 2017 #77

Thank you Tanuki Oct 2017 #166

Sending you as many thoughts as possible focused on the color green. calimary Oct 2017 #78

Thank you. I knew I would find solace here. And I will spend some time Tanuki Oct 2017 #168

I remember when my mom had her first major heart attack, I wore green every day. calimary Oct 2017 #236

Words fail CanonRay Oct 2017 #79

Thank you. Tanuki Oct 2017 #169

You will always have her, if only in your heart. Crying with you. raven mad Oct 2017 #80

Thank you. She is keeping a journal. Tanuki Oct 2017 #170

Heartbreaking. My condolences to you and yours as you suffer through this. aikoaiko Oct 2017 #81

Please may it be so! Thank you. Tanuki Oct 2017 #171

I hope your angel receives a miracle BootinUp Oct 2017 #82

She is indeed worthy of a miracle...and so is every innocent little child. Tanuki Oct 2017 #172

Will keep you in my thoughts krakfiend Oct 2017 #83

Thank you Tanuki Oct 2017 #173

Welcome to DU, krakfiend. calimary Oct 2017 #239

... Different Drummer Oct 2017 #84

...no words... thoughts, prayers, hope, comfort and love to you and yours. Jack-o-Lantern Oct 2017 #85

For all of those things....I thank you Tanuki Oct 2017 #175

..... Tanuki Oct 2017 #174

So very sorry. Duppers Oct 2017 #86

Thank you Tanuki Oct 2017 #176

Oh I am sorry, Tanuki annabanana Oct 2017 #87

Priorities... That is an excellent point. Think of the advances in medicine that could have been Tanuki Oct 2017 #178

I'm so sorry LittleGirl Oct 2017 #88

Thank you Tanuki Oct 2017 #179

I'm so sorry kcr Oct 2017 #89

..... Tanuki Oct 2017 #180

I am sorry to hear it. MarvinGardens Oct 2017 #90

I really appreciate that Tanuki Oct 2017 #181

I found a clinical trial into a new drug renate Oct 2017 #91

Thank you. It would be awesome if this would restore her health! Tanuki Oct 2017 #183

I am so sorry. Sending thoughts and prayers to your angel. Glimmer of Hope Oct 2017 #93

Thank you, and I love your screen name! A Glimmer of Hope is what I need right now! Tanuki Oct 2017 #184

I am so sorry. You might look into the ChadTough foundation. Barack_America Oct 2017 #101

Thank you for this resource Tanuki Oct 2017 #185

... RKP5637 Oct 2017 #108

..... Tanuki Oct 2017 #187

(((hugs))) Tanuki. I will be praying for your little angel and all who love her. sueh Oct 2017 #111

Thank you so much! Tanuki Oct 2017 #188

I am so very sorry, Tanuki. hamsterjill Oct 2017 #133

Thank you for your prayers and kind words Tanuki Oct 2017 #189

My gut aches after reading this pandr32 Oct 2017 #135

Thank you. I knew I would find compassion and understanding here at DU Tanuki Oct 2017 #190

... AwakeAtLast Oct 2017 #140

..... Tanuki Oct 2017 #191

..... Tanuki Oct 2017 #192

We lost a little girl in the family this year mrs_p Oct 2017 #142

I am so sorry about the loss of your niece. Thank you for your compassion. Tanuki Oct 2017 #194

😢 seta1950 Oct 2017 #145

Thank you. Tanuki Oct 2017 #195

Stay strong and read the book The Sender lancelyons Oct 2017 #156

Thank you...I will look it up Tanuki Oct 2017 #196

I feel so bad for you. You and your family were given a gift in her. Lint Head Oct 2017 #157

Thank you. We know we have had a precious gift....we just never imagined it would be taken away Tanuki Oct 2017 #197

.......... Lint Head Oct 2017 #203

Such devastating news DesertRat Oct 2017 #158

Thank you kindly Tanuki Oct 2017 #198

I don't pray anymore. sheshe2 Oct 2017 #167

Not everyone prays. I know you have a kind and compassionate heart Tanuki Oct 2017 #199

Post removed Post removed Oct 2017 #177

I'm so sorry. Corvo Bianco Oct 2017 #182

Thank you Tanuki Oct 2017 #200

So heartbreaking Raine Oct 2017 #186

..... Tanuki Oct 2017 #201

. lunamagica Oct 2017 #193

..... Tanuki Oct 2017 #202

Message: sprinkleeninow Oct 2017 #204

Please see PM for her name. Interesting that you picked up on the word Tanuki Oct 2017 #221

Been there- too many times RainCaster Oct 2017 #205

Thank you, RainCaster. I know I am strong enough to cope, and will Tanuki Oct 2017 #223

I am sorry and angry that you are facing this. Ken Burch Oct 2017 #206

Thank you for your compassion. And today, as part of my time of prayer Tanuki Oct 2017 #224

I hope that will help. Ken Burch Oct 2017 #228

Will you also send me her first name Jane Austin Oct 2017 #207

Yes. Please see PM. Tanuki Oct 2017 #226

Oh, I Am So Very Sorry DarthDem Oct 2017 #208

Thank you for this. Tanuki Oct 2017 #227

All in prayers TEB Oct 2017 #210

Thank you. Maybe you can play a prayer on one of your guitars. Tanuki Oct 2017 #231

I apologize for missing this yesterday - IndianaDave Oct 2017 #211

Thank you, Dave. This means the world to me right now. Tanuki Oct 2017 #232

I lost my son, Joshua when he was 3 1/2 to Sepsis brought on when the digestive enzymes we gave Dustlawyer Oct 2017 #212

I am so sorry about Josh. I read a book by former Sports Illustrated editor Frank DeFord Tanuki Oct 2017 #233

Thanks, he turned out to be a really good man! Dustlawyer Oct 2017 #260

i am so sorry. barbtries Oct 2017 #213

Thank you. I am sorry to know that you went through a tragedy of your own. Tanuki Oct 2017 #234

I'm so sorry for you Tanuki syringis Oct 2017 #214

Thank you for your kindness and compassion. Please don't imagine Tanuki Oct 2017 #235

My granddaughter was 9 months old when she was diagnosed with neuroblastoma KrazyinKS Oct 2017 #215

I was so happy to read the part of your post that said "she is 7 years old now." Tanuki Oct 2017 #238

My heart goes out to you.... Dem_4_Life Oct 2017 #216

Thanks for the hugs and prayers! Tanuki Oct 2017 #240

My heart goes out to you and this little girl riverbendviewgal Oct 2017 #217

I am so sorry both that you had those two very great losses but that Tanuki Oct 2017 #241

That is horrible to hear and my heart goes out to you and her. Moostache Oct 2017 #218

Thank you for your kindness and empathy. I feel less alone knowing that others care. Tanuki Oct 2017 #243

I'm so, so sorry to read this. MineralMan Oct 2017 #219

Thank you. Tanuki Oct 2017 #244

... geardaddy Oct 2017 #220

..... Tanuki Oct 2017 #245

That is horrible! Initech Oct 2017 #222

..... Tanuki Oct 2017 #246

This is so heartbreaking LeftInTX Oct 2017 #225

Thank you. I deeply appreciate your prayers. Tanuki Oct 2017 #247

I'm so sorry, Tanuki. Prayers for her, for all of you. highplainsdem Oct 2017 #229

Thank you for this. Tanuki Oct 2017 #248

Thoughts of healing and prayers iamateacher Oct 2017 #230

I appreciate your prayers and words of compassion. Tanuki Oct 2017 #249

I am so sorry, Tanuki. Lifelong Protester Oct 2017 #237

No other words needed. Reaching out to express empathy was kind of you. Tanuki Oct 2017 #250

I am so sorry. GoCubsGo Oct 2017 #242

She is not actually at St. Jude's, but at another excellent pediatric oncology Tanuki Oct 2017 #251

omg I am so sorry. flygal Oct 2017 #252

Thank you. I had never heard of it either and wish I had no reason to know of it now. Tanuki Oct 2017 #255

ggggrrrrrrrrrrrrrrrrrrrr MFM008 Oct 2017 #253

I do appreciate that very much! Tanuki Oct 2017 #256

There are 27 clinical trials underway for this disease. I just collected a number of scientific... NNadir Oct 2017 #254

Thank you...please see your PM. Tanuki Oct 2017 #258

...... Heartstrings Oct 2017 #257

....... Tanuki Oct 2017 #259