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Curt

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  1. Like
    Curt got a reaction from BridgetO in Mother dying from lung cancer/copd   
    Aileen I’m so sorry to hear about your mom.  I helped my father through an in home hospice and it was a difficult time indeed.  I also found the  hospice service frustrating at times.  I felt like they should have been able to better tell us what was happening, why, what would happen next and when that was going to happen.  The truth is it’s different for everyone.  The thing that is important to remember about late phase hospice is the body stops needing to do the things it did for life in order to prepare itself for what is next.  My father did a lot of the things you are describing.  He slept all day/night without waking up, stopped eating/drinking, was not conscious, his breathing became very shallow and light and his body temperature got cooler.  Giving your mom breathing treatments and making sure the proper amount of painmedication is being adminster so she is comfortable may be all she needs right now. 
     I’m so sorry for what you, your son and your mother are going through.  Making sure you and your son are taking care of yourselves is important.  Rest when you can.  My thoughts and prayers are with you.  We are here for you.  
  2. Like
    Curt reacted to Barb1260 in NOW my hair falls out?   
    Ooh, longer eyelashes. That’s a plus. And I’m hoping for fuller eyebrows. Lol. 
  3. Haha
    Curt reacted to Rower Michelle in NOW my hair falls out?   
    My mother’s hair fell out after 5 rounds of Carbo sort of in clumps & she shaved it.  Your question brought back a funny memory.  My Mom bought a Grateful Dead baseball cap at the Meadowlands Flea market for about $1.  She wore that until her hair grew back enough for the first pixie cut.  Only in NJ would people think a 70+ year old lady wearing  GD hat is completely normal!  
  4. Like
    Curt got a reaction from Tom Galli in Mother dying from lung cancer/copd   
    Aileen I’m so sorry to hear about your mom.  I helped my father through an in home hospice and it was a difficult time indeed.  I also found the  hospice service frustrating at times.  I felt like they should have been able to better tell us what was happening, why, what would happen next and when that was going to happen.  The truth is it’s different for everyone.  The thing that is important to remember about late phase hospice is the body stops needing to do the things it did for life in order to prepare itself for what is next.  My father did a lot of the things you are describing.  He slept all day/night without waking up, stopped eating/drinking, was not conscious, his breathing became very shallow and light and his body temperature got cooler.  Giving your mom breathing treatments and making sure the proper amount of painmedication is being adminster so she is comfortable may be all she needs right now. 
     I’m so sorry for what you, your son and your mother are going through.  Making sure you and your son are taking care of yourselves is important.  Rest when you can.  My thoughts and prayers are with you.  We are here for you.  
  5. Like
    Curt got a reaction from Rower Michelle in Mother dying from lung cancer/copd   
    Aileen I’m so sorry to hear about your mom.  I helped my father through an in home hospice and it was a difficult time indeed.  I also found the  hospice service frustrating at times.  I felt like they should have been able to better tell us what was happening, why, what would happen next and when that was going to happen.  The truth is it’s different for everyone.  The thing that is important to remember about late phase hospice is the body stops needing to do the things it did for life in order to prepare itself for what is next.  My father did a lot of the things you are describing.  He slept all day/night without waking up, stopped eating/drinking, was not conscious, his breathing became very shallow and light and his body temperature got cooler.  Giving your mom breathing treatments and making sure the proper amount of painmedication is being adminster so she is comfortable may be all she needs right now. 
     I’m so sorry for what you, your son and your mother are going through.  Making sure you and your son are taking care of yourselves is important.  Rest when you can.  My thoughts and prayers are with you.  We are here for you.  
  6. Like
    Curt reacted to Tom Galli in Mother dying from lung cancer/copd   
    Aileen,
    No need to apologize. You've really helped our community giving us insight into hospice care and end-state disease.
    I've been with several who've passed under hospice care and your description of functional and cognitive losses matches the timing and sequence I've observed.  Without exception, there was a period where food was refused and it is likely related to morphine dosage. To ease her breathing, in addition to the albuterol treatment, you might ask if hospice can bring a humidifier.  Adding humidity to her room sometimes eases hampered breathing.
    At this juncture, the symptoms you've observed are likely caused by advanced cancer metastasis coupled with COPD.  As far as what hospice thinks, I think their opinion is irrelevant. If you need them everyday, they should be there everyday.  I'd make that quite clear.  It is my experience that when the patient becomes bed-bound, hospice attends at least once everyday.
    I do agree with your need for rest.  You've got a lot on your plate already and more to come so your strategy for getting rest is a good one.  I wish I could do more to help.
    Stay the course.
    Tom
  7. Like
    Curt got a reaction from Rower Michelle in Ears ringing and a few more questions:   
    I had a lot of sensititvy to sound and ringing in my ears post surgery.  I purchased a pair of noice cancelling head phones and used those, they helped a lot.  I would often put the headphones on with the noice cancelling white noise alone (no other sounds) amd it would soothe me.  I’d wear them a lot during the day and at night.  I can’t speak for the science behind it but it might be worth a shot.    
  8. Like
    Curt reacted to Rower Michelle in All Shipped Out!   
    I know I will feel better just writing this stuff down. Yesterday was an administrative nightmare.  It took 7 hours on the phone  to get my Alectinib refilled yesterday!  The refill date coincided with the COBRA effective date.  I had hubby send the COBRA payment in 5 weeks ahead of time since I've rarely seen a COBRA payment processed correctly on the first go round.   We had to bust through the bureaucracy of 4 companies and their eligibility systems to have my COBRA payment reflected. At one point the specialty pharmacy vendor customer service representatives were actually yelling at the medical insurance company's customer service department after 4 transfers and plenty of misinformation.  
     So you've got to know when I got one of those happy automated customer service e-mails "how did we do". I actually took the time to fill it out in detail!! Yikes.  If you all are dealing with commercial insurance, know that each inquiry has a unique tracking number.  Ask for that and keep it in your records. Yesterday's round about will end up on an outlier report that will  make for interesting reading at some poor sod's quality service committee meeting.  
    The mountain of paperwork got ALL SHIPPED out this afternoon!  HOORAY.  It took six weeks, 50+ hours, 2 doctors, 1 attorney, 1 CPA and 2 financial planners to pull all this STUFF together. I sent it with tracking, signature required.  So now what I need to be prepared for is the next round of whatever gets lost or isn't completed to the insurance company standard.  Bird shot compared to the MOAB I had start in January.  
    For now I feel like the major distractions will be much more manageable and I can once again focus full time on my wellness programs.  Maybe chair yoga on Mondays??  
    Thanks for helping me through this and letting me whine about it.  Happy to help anyone who has to go through the long term disability process to share lessons learns,.  Jersey Strong.  Onward!   
    Michelle 
  9. Like
    Curt reacted to Road bum in No.1 down and Counting   
    I had my first round of taxotere on Feb. 22. Had a serious flush on my face and chest 
    Saturday morning.
    My peripheral neuropathy was really kicking in by Sat. evening and my ankles were starting to ache. I didn’t sleep very much Sat. night. Sunday morning was a whole new experience. I woke up about 4:30 with the bones in my feet and ankles absolutely screaming. It progressed up the long bones in my legs to my knees. It felt like  bones and joints were cracking to the beat of my heart. That continued to my knees. The pain was a solid 7 and some times an 8 on the pain scale. I called my after hours number and within an hour my medication was ready at the pharmacy. At this point I may have over medicated just a little but I slept all night. My wife said my legs moved around a lot and I rubbed my feet together almost all night. Monday morning I only had to take 2 pain pills all day and it was very tolerable.Had a lot more trouble with the neuropathy all this past week, but it was doable. 
    I woke up this Thursday morning and by the time I got dressed my energy for the day was gone.
    Friday morning I had my appointment with my oncologist and as usual they did a full spectrum blood test. This is one of the things I really appreciate at the Montgomery Cancer Center. Every time I have a treatment or a doc’s visit they do the blood work. Took maybe 15 min. for me to get into see my doctor. I have never waited more than 20 minutes on any appointment I have had there.
    Doc had the blood work completed and in her hand when she walked into the room. I have never been made to feel rushed while I have been there and this center serves almost all of southern Alabama. It is always busy there. Anyway pompoms down.
    Doc brought in a 2 copy’s of my blood work and and we went over it. My WBC count is down to 1.2. So she is going to work up some other options and if the blood work is the same on the 13th she will tweak my treatment some.
    I’m really tired and I have a couple of sores in my mouth and a sore throat. I’m using Magic Mouthwash. Why didn’t somebody warn me😳that is the nastiest stuff I have ever had in my mouth. If it didn’t work so well I would burn the stuff so no one else couldn’t use it.
    So, some side effects but nothing I can’t handle.
    The journey continues with all occupants safe in the boat.
     
     
  10. Thanks
    Curt got a reaction from Ld1978 in Hello   
    Ld,
    I had a chest tube in until about an hour before they released me.  They pulled the tube, did an X-ray and sent me packing within an hour.  Keeping the tube in for as long as is needed is standard.  I was told I could be in the hosptital for as much as seven days depending on how well the fluid drained.  It’s differemt for everyone.  I’m only 42 so that may have had an impact on my getting out of the hospital when I did.  I also had an air pocket at the top of my chest cavity that they were watching.  It didn’t get any bigger or any smaller so they decided it wasn’t of concern.  I know all of this is scary, frustrating and sometimes overwhelming but what is happening are expected in some cases and correctable. Breathe deep and take some time for your self while dad is resting.  Your health is just as important, its easy to forget that right now.  You need to be healthy and strong if you want to be there for him.  
     
  11. Like
    Curt got a reaction from BridgetO in Hello   
    Ld,
    I had a chest tube in until about an hour before they released me.  They pulled the tube, did an X-ray and sent me packing within an hour.  Keeping the tube in for as long as is needed is standard.  I was told I could be in the hosptital for as much as seven days depending on how well the fluid drained.  It’s differemt for everyone.  I’m only 42 so that may have had an impact on my getting out of the hospital when I did.  I also had an air pocket at the top of my chest cavity that they were watching.  It didn’t get any bigger or any smaller so they decided it wasn’t of concern.  I know all of this is scary, frustrating and sometimes overwhelming but what is happening are expected in some cases and correctable. Breathe deep and take some time for your self while dad is resting.  Your health is just as important, its easy to forget that right now.  You need to be healthy and strong if you want to be there for him.  
     
  12. Like
    Curt got a reaction from ColleenRae in Hello   
    Ld,
    I’m sorry to hear about your dad’s diagnosis.  My father was diagnosed with lung cancer about seven years ago.  Unfortunately for him a lobectomy was not an option.  I am currently recovering from a full right upper lobe lobectomy I had done on Tuesday, from that surgery I was diagnosed with Stage 1 Adenocarcioma NSCLC.  I was able to come home last night.    The complications your dad is having are not uncommon and usually clear up in a few days.  I will tell you that I have found Tom’s recommmendation regarding the foam wedge pillow to be a good one.  I’ve been using it along with other pillows to keep me propped up at night.  It provides the necessary amount of stability so I don’t have to keep adjusting the pillows.  He will want to be propped up.  I would also try and get a comfortable arm chair for next to the bed so he can get up and out of bed each day.  I find getting out of bed to be difficult but once I’m up I feel a lot better.  The arm chair is a good first step.  Walking and doing the spirometer (breathing exercises) as much as possible also helps a lot.  I actually feel less pain when I walk.  There is a little with the spirometer but it goes away quickly.  I’ve noticed considerable improvement the more I’ve done both.
    I’ve been the caregiver and am now the patient.  In the beginning when I was the caregiver I funneled a lot of my energy into the physical things my dad needed.  As time went on I found he needed as much or more emotional support than physical.  Now as the patient I understand that even more.  He may feel really uncomfortable with this situation if the caregiver/care receiver roles have changed without much notice.  Let him know you love him, that this diagnosis hasn’t changed who he is and that things will get better.  If he was able to have a VATs lobectomy the prognosis is better than with other treatments.  
    You will find lots of support and answers to questions I’m sure you both will have on this forum   Keep coming back to ask them and give us updates   
    My thoughts are with you both.  
  13. Thanks
    Curt got a reaction from Ld1978 in Hello   
    Ld,
    I’m sorry to hear about your dad’s diagnosis.  My father was diagnosed with lung cancer about seven years ago.  Unfortunately for him a lobectomy was not an option.  I am currently recovering from a full right upper lobe lobectomy I had done on Tuesday, from that surgery I was diagnosed with Stage 1 Adenocarcioma NSCLC.  I was able to come home last night.    The complications your dad is having are not uncommon and usually clear up in a few days.  I will tell you that I have found Tom’s recommmendation regarding the foam wedge pillow to be a good one.  I’ve been using it along with other pillows to keep me propped up at night.  It provides the necessary amount of stability so I don’t have to keep adjusting the pillows.  He will want to be propped up.  I would also try and get a comfortable arm chair for next to the bed so he can get up and out of bed each day.  I find getting out of bed to be difficult but once I’m up I feel a lot better.  The arm chair is a good first step.  Walking and doing the spirometer (breathing exercises) as much as possible also helps a lot.  I actually feel less pain when I walk.  There is a little with the spirometer but it goes away quickly.  I’ve noticed considerable improvement the more I’ve done both.
    I’ve been the caregiver and am now the patient.  In the beginning when I was the caregiver I funneled a lot of my energy into the physical things my dad needed.  As time went on I found he needed as much or more emotional support than physical.  Now as the patient I understand that even more.  He may feel really uncomfortable with this situation if the caregiver/care receiver roles have changed without much notice.  Let him know you love him, that this diagnosis hasn’t changed who he is and that things will get better.  If he was able to have a VATs lobectomy the prognosis is better than with other treatments.  
    You will find lots of support and answers to questions I’m sure you both will have on this forum   Keep coming back to ask them and give us updates   
    My thoughts are with you both.  
  14. Like
    Curt reacted to Laurel in First year Cancerversary and NED   
    I've decided my cancer free anniversary is 2/16/2018....after surgery. I was NED after surgery....last May, NED after chemo....last October, after radiation. I have gone through pneumonia twice last year and bronchitis this year. I am finally feeling stronger...back to dance and walking the dog. Yea! Let's celebrate your NED and feeling stronger.
  15. Like
    Curt got a reaction from Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Thank you for all the responses and advice.  My instinct is to be honest with my kids about it.  My wife worries it will upset them too much.  My father died from lung cancer and it is something that we talk to them about..  I think in their mind Lung Cancer means dying.  I’m also concerned on a professional level that my customers will be less likely to use my company because my diagnosis.  I’m the driving force behind the work we get and I’m worried my competitors will use it against me.   I keep thinking of it as a weakness   I don’t like have weaknesses  
    Lisa you have been on my mind as well.  I know our paths have been similar and I wondered how my results would affect you.  We do have some differences.  I’ve been following mine for a year, I have a very large history of lung cancer in my family and I had two doctors tell me this is what I should do.  I put this surgery off for almost a month so that I could go on vacation with my family.  Given the growth rate over the last year the doctor didn’t feel that was an issue.  The final tumor size did end up being 1 CM instead of 8 MM.  The doctor said that could have been due to growth or just a variation on the scan.  If your doctor is saying it’s ok to wait until April and you’ve gotten a second opinion about that then I think that’s ok, but I understand your anxiousness about it   
    I had my gallbladder removed last year.  It’s how I found out about this spot.  That surgery was more painful a recovery.  I’ve had no quality of life changes from that surgery.  I’m told I will have very minimal from this.  It’s really strange but just sitting here typing this I don’t notice any difference in my breathing.  There are definitely differences in the amount of air I’m able to take in on the spirometer, but it doesn’t seem to affect me when sitting still or light walking.  If I go up and down stairs that winds me.  Going outside in the cold last night (18 degrees) was really tough.  I was surprised by how hard it was to breath in that cold.  I’m told all that will pass with time.  
    If you have the wedge resection it is a pretty minimal procedure with no quality of life issues.  There are always the general concerns with surgery and general Anastesia but in terms of surgery a wedge resection  is considered more of a procedure than a surgery. If you end up needing the full lobectomy then that is what it is, there is very little to consider in that instance.  
    Please keep me posted on your progress.  I know how stressful this all is.  I’m here for you.
      
  16. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Awww Curt, I have been holding my breath waiting for your outcome, I am very surprised.  I’m so glad that you got a second opinion and just went for it instead of continuing the watch and wait.  Our stories are similar, same size, no uptake on Pet and spiculated, makes me wonder if I’m doing the right thing by waiting until April or I should insist on Vats now.  At least you now know what it is and ofcourse stage 1 is a great outcome, you said Vats wasn’t that bad, easier than you thought?  How is your breathing? I am thinking of you every day and I’m glad you have support, I’m so sorry my friend.
    Lisa
  17. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Laurel, I totally understand and it was 3 weeks from original ct scan to the pet/ct scan and nothing changed I also had nothing glow on pet scan which they feel would be slow growing and the norm is to wait to see if it grows, I have been following Curt and he has been dealing with this a year, I found the nodule 2 months ago.  My pulm doc also said the nodule doesn’t look spiculated like original scan, I met my new primary doc today also and she also agreed with next ct scan, it is all so very scary no lie so unless it has gone away or gotten smaller next scan I might just as Lexi cat would say go to the big guns cancer center and just have it removed 
    I hope you are doing ok.
    lisa
  18. Thanks
    Curt reacted to Rower Michelle in Wedge Lobectomy Scheduled Feb 26   
    Hi Curt
    I can totally understand the professional issues you are facing. It’s easy to say this-have faith in your customers.  I think they will stand by you. The message is simple- the cancer is gone.  This is the new face of lung cancer.  Any competitor that tries to use this information to steal away business will be viewed as transparent sleezebags.  
    I wasn’t the CEO but I was about to sign a COO gig the day I was hospitalized.  I was so overwhelmed.  Ironically I’m fighting a Stage IV diagnosis & I’ve had three job offers since September!  I came from a very competitive health care software industry (insurance before that).  Totally unexpected outcome- savvy people don’t see lung cancer as a death sentence. 
    You might not only retain all your business but gain more if clients can see your tenacity to fight.  It’s easier said than done so try to put away the worry & focus on recovery.  Take the time you need without rushing back into the pace.  
    Michelle
  19. Like
    Curt got a reaction from Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Thank you for all the responses and advice.  My instinct is to be honest with my kids about it.  My wife worries it will upset them too much.  My father died from lung cancer and it is something that we talk to them about..  I think in their mind Lung Cancer means dying.  I’m also concerned on a professional level that my customers will be less likely to use my company because my diagnosis.  I’m the driving force behind the work we get and I’m worried my competitors will use it against me.   I keep thinking of it as a weakness   I don’t like have weaknesses  
    Lisa you have been on my mind as well.  I know our paths have been similar and I wondered how my results would affect you.  We do have some differences.  I’ve been following mine for a year, I have a very large history of lung cancer in my family and I had two doctors tell me this is what I should do.  I put this surgery off for almost a month so that I could go on vacation with my family.  Given the growth rate over the last year the doctor didn’t feel that was an issue.  The final tumor size did end up being 1 CM instead of 8 MM.  The doctor said that could have been due to growth or just a variation on the scan.  If your doctor is saying it’s ok to wait until April and you’ve gotten a second opinion about that then I think that’s ok, but I understand your anxiousness about it   
    I had my gallbladder removed last year.  It’s how I found out about this spot.  That surgery was more painful a recovery.  I’ve had no quality of life changes from that surgery.  I’m told I will have very minimal from this.  It’s really strange but just sitting here typing this I don’t notice any difference in my breathing.  There are definitely differences in the amount of air I’m able to take in on the spirometer, but it doesn’t seem to affect me when sitting still or light walking.  If I go up and down stairs that winds me.  Going outside in the cold last night (18 degrees) was really tough.  I was surprised by how hard it was to breath in that cold.  I’m told all that will pass with time.  
    If you have the wedge resection it is a pretty minimal procedure with no quality of life issues.  There are always the general concerns with surgery and general Anastesia but in terms of surgery a wedge resection  is considered more of a procedure than a surgery. If you end up needing the full lobectomy then that is what it is, there is very little to consider in that instance.  
    Please keep me posted on your progress.  I know how stressful this all is.  I’m here for you.
      
  20. Like
    Curt reacted to Shelkay1 in Wedge Lobectomy Scheduled Feb 26   
    "You have cancer" is never something we ever want to hear; but yours sounds like it was caught early. Hopefully you won't need chemo or radiation. Telling people, especially your children that you have cancer can be a challenge. Our children are all adults (6 daughters); since they don't all live in the area, I told them via a text message.  I was up front and open with everyone at work about my diagnosis. Since I work in a retirement community where everyone talks, I'd  rather them to know the truth rather than someone's mixed up version. In addition, they I now have them as prayer warriors. 
  21. Like
    Curt reacted to Laurel in Wedge Lobectomy Scheduled Feb 26   
    I'm sorry about your cancer diagnosis but Stage 1 and no lymph nodes involved is nice. I went into VATS last February as stage 1. After surgery, we were celebrating they got all the cancer. 10 days later, I was told stage 3 due to increase in size and lymph nodes involved. I went through chemo and radiation. I shared with everyone. I wanted the support. I would be surprised that your young ones don't realize something about your illness.  They don't need all details, but answering their questions might be of help.
  22. Like
    Curt reacted to Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Curt,
    Good news on your surgery.  I do hope you recover and get discharged quickly. Unfortunately, chest tubes are not uncommon in either a VATs or conventional thoracotomy. They are however a minor inconvenience.  I remember my first removal. My surgeon "short counted me".  "On three", and pulled it at the count of two!
    I think your routine of continuing scans and followups, likely for at least the next 10 years will be hard to hide.  I told friends and family of my condition and that turned out to be the best decision for me.
    Get better and stay the course.
    Tom 
  23. Like
    Curt reacted to PaulaC in Wedge Lobectomy Scheduled Feb 26   
    Good morning Curt, I’m sorry to here about your diagnosis but relieved they caught it early. 
    I think what Michelle said about getting it out is a simpler way then I did it. I had just retired but thankfully my husband was still working. He personally wanted to keep it quiet and just our immediate family. I have to say it’s not the easiest or best way to do it because you need support from all directions. Also, I think some that found out about it later were hurt because they felt I kept it from them. 
    I think you’ll do what you need to do and it’ll be the right thing. Take care and try not to worry about it. 
  24. Like
    Curt reacted to Rower Michelle in Wedge Lobectomy Scheduled Feb 26   
    Hi Curt,
    I’m so sorry to hear about your diagnosis. I’ve been following your posts and hoping this was nothing too.  I’m glad the surgery went well & very relieved this got caught at Stage I.  
    I had the same dilemma about how to communicate my diagnosis to my family, friends & employees too.  Initially I wanted to keep this news to a small circle of friends & family.  I got some advice from my Dad’s nurse to head in the opposite direction.  She said support comes from the people you least expect it.  I worked in a small field with a big gossip chain so it wasn’t going to be possible to keep my professional life out of this.   For me, Dad’s nurse was spot on.  I reversed course & told everybody over the course of a few weeks.  As a former sales executive, I developed my own version of “the elevator pitch”  short & simple. 
    The first few discussions were really hard for me however I somehow found the strength that I didn’t know I had.  It somehow got “easier” as I moved down the list.  
    Trust your instincts & focus on your recovery as a top priority.  
    My thoughts and prayers are with you.   
    Michelle
     
  25. Like
    Curt got a reaction from Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    I had the surgery on Tuesday and the initial results are Stage 1 NSCLC adenocarcinoma.  They went ahead with the full upper right lobectomy and removed the surrounding lymph nodes.  Initial indications are that the cancer did not spread beyond the 1 CM primary tumor and will not require any additional treatment, just periodic scans.  I will get more definitive results next week when the pathology report comes back.  They are also doing genetic testing that will take a bit longer and give more specific information on the characteristics of my tumor.  
    The surgery was was not awful.  They have gotten so good at managing pain.  I still have my chest tube in.  They clamped it off yesterday and have been doing XRays.  There is a bit of an air pocket that they would like to see either not get bigger or go away before removing the tube.  They are going to do anothEr XRay this afternoon.  There is a chance that I can go home tonight, or tomorrow at the latest.
    I can’t say I’m shocked, but I’m surprised.  I was really holding out hope that it was nothing.  I’m struggling with who to tell and how to tell them. What do I tell my kids?  They are 6, 8 amd 10 year old boys.  What about my employees, friends, etc?   I don’t even know how to  or if yo broach the topic with some of them. 
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