I lost my son to a rare cancer

[jamesX]

My son passed away a week ago after he was diagnosed a very rare cancer in his trachea. CT scan found a 5x4x3 cm mass outside and inside his trachea. His airway was nearly blocked by the tumor so a stent was put in his airway. He was able to breathe but the stent makes him cough day and night. He kept coughing for the next two weeks, and the cough did its maximum damage on a Sunday – he had a big bleeding from the stent and tumor area which directly led to his pass a few days later.

All of these happened in such a quick and unexpected way. My wife and I have been in indescribable pain and grief. There is not even a second that we think this is real. In addition, I have several questions and your comments are highly appreciated.

My first question: is the quick growth of the tumor anything to do with the COVID vaccine? His airway was nearly blocked right one month after his second dose, so the timing seems in such a coincidence. It appears that the vaccine accelerated the growth of the tumor.

Second question: can jaw pain be related to trachea tumor? He complained occasional jaw pain a year ago. His jaw pain may or may not be related to his trachea mass, but I feel extremely guilty because I did not even think of taking him to do a CT scan on head and chest. A simple CT scan would have found the mass when it was smaller in size. I know this is with hindsight, but still I should have done something.

Finally, I have a thought. He had appointments with several interventional pulmonologists (including the one who placed the stent) but none of them warned him that the stent can cause coughing, and coughing can lead to the burst of the tumor. His life might be saved if those warnings were given.

[MartyT]

I am so sorry to read of the tragic loss of your son, and my heart reaches out to you in your pain.

You've asked some legitimate and important questions, but I'm afraid we're not qualified to answer many of them. We are here to offer reliable information, comfort and support as you find your way through grief, but you also need and deserve the expertise that only a specialist in medicine and oncology can provide. I hope you will ask to meet with one or more of the physicians involved in your son's care, so you can get those important questions addressed and answered. 

As for questioning what you could have, should have, or would have done differently to save your beloved son, I can only assure you that hindsight is always better than foresight ~ but we simply cannot know what we do not know, and I'm sure you did the best you could for your son, given what you knew at the time.

While I don't want to overwhelm you with too much information, I do want to point you to some readings that I hope will help you better understand what you may be feeling and why. Note that additional readings are listed at the base of each these articles. Grief may affect your attention span and ability to centrate, so I suggest that you take the content in doses you can tolerate, and know that you can come back to read if and when you feel better able to do so:

Grief: Understanding The Process

When A Child Dies: Resources for Bereaved Parents

[Kieron]

I would add one thing to Marty's response, and that is that any hospital has a patient advocate on staff.  That person or office is there to help you connect with physicians or anyone involved in patient care, to get questions answered, or intervene when you feel your concerns not being heard by the hospital, get a second opinion, etc.  They're often highly trained.  Here's more on that role: https://www.beingpatient.com/what-is-a-patient-advocate/

Meanwhile, I'm really sorry for this sad situation you find yourselves in.  The impulse to question and second-guess, just wanting answers, is such a familiar one here.

 

[kayc]

I am so sorry for your loss.  I do know   from being here 16 years that grievers tend to go through all of the "what ifs" following their loss, in a way to find a different possible outcome because the one that happened is too abhorrent to assimilate.  But none of the what ifs changes what happened and we don't have the benefit of hindsight as foresight.  Perhaps you could talk to the doctor and get your question answered.  I did that following the death of my husband, and extracted a promise from him that what happened to him (not being referred to a cardiologist when complaining of heart problems, which resulted in his death) would not happen to someone else as it did to him and one other man around the same time.  It was too late for them, but perhaps it saved someone else from going through this.

I wish for you some peace going forward...  Meanwhile, it does help to express yourself and know you're heard.

[jamesX]

Thanks so much for all of your replies and great comments. They are really comforting me. I asked similar questions to most of my son's doctors, and they said that the disease was very rare, etc. Again, no doctors knows what would happen next. There are so many unknowns...

I totally agree with kayc that it helps a huge to express myself and know I am heard. I also don't want to see other parents to go through this.

[kayc]

We can't change anything but we care!