I Wear Violet For My Son!!!

Well, this Mommy is going to talk about some very serious stuff.  A lot of you who follow my blog are aware that my teenage son was diagnosed with Hodgkin’s Lymphoma on June 30, 2011.  The diagnosis was a complete shock since we had been told over and over it was nothing.  

This all started in January of 2011, driving him home from school, he told me that he wanted to get this lump in his neck checked. We both assumed it was just a swollen gland but he was hyper aware with his aunt just having been diagnosed with breast cancer.  So we made an appointment at the ENT and we began months of going back and forth, starting antibiotics for a couple of weeks in case it was an infection, then a CAT Scan, and we were told that because it does get smaller and the way it looks on the CAT Scan that it does not appear to be anything serious. So we continued going every couple of weeks for another assessment.  The doctor was more afraid of operating because she said it could cause damage to his facial nerves, so she was trying the wait and see and based on the scan and the fact that it would sometimes shrink to almost nothing.

Winter turned to spring and she finally thought we should get a second opinion. We went to another ENT who felt the same about that scan results, she suggested some blood work to rule out Cat Scratch Fever and Mono.   His blood work came back fine so then she sent us for a needle biopsy.  We were called with the results and they said they were normal.  At this point she thought we should have the surgery to remove the lump but that it was not a serious thing.

So the third week of June, Michael and I went to the hospital.  His surgery was supposed to be over in about 45 minutes but as it neared an hour and a half, a nurse came out to talk to me.  She told me that nothing was wrong but the doctor wanted me to know the reason the surgery was taking longer, was that the nodule was in a delicate area behind the salivary gland and it is requiring more time to remove because of where it is located.

Thirty minutes later the doctor came out and took a seat next to me.  She emphasized that the only reason the surgery took so long was due the delicate area she was removing the lymph node from. She said it looked fine and she did not think it was anything serious. She said we would have the pathology results in about a week. We laughed, talked about the summer,, and then I was allowed to see Michael in recovery.  He was doing well and just wanted to go home.  After about an hour or so we were released and we both left with a great sense of this ordeal finally being over.

A week later, when my husband woke me with the words, “Michael has Hodgkin’s Lymphoma” I knew I was still dreaming.  As the words kept repeating in my head, I soon saw I was very much awake and my husband was really here talking to me.  The doctor that operated on him, had just called.  She was shocked as can be and reassured my husband and then Michael that the prognosis is very good and she would get us right in to see an Oncologist.

My head was swirling, a million thoughts were running through my mind.  I was in shock and utter disbelief.  We did not have any history of this in our family, how could they have not seen anything from the CAT  Scan, needle biopsy, how could this be?  Then thoughts of Curb Your Enthusiasm, came to my mind and Larry talking about the good Hodgkin’s.

We were able to get an appointment for that afternoon and I know I was on autopilot.  Michael and I drove to the doctor’s office, it was the most beautiful afternoon, bright blue sky and brilliant sunshine.  This is not a day you find out your son has cancer.  We joked and laughed on the ride down showing us clearly that laughing and crying are more similar emotions then you would ever think.  Michael had a great attitude, he was upbeat and we even shared a laugh talking about that Curb Your Enthusiasm episode on the way down.

We saw the doctor and he explained that Michael has a very “good” Hodgkin’s and that given it was not detected with any of the testing he had, that it was caught very early. He said our next step was some more blood work and a PET Scan.  We had to talk about the treatment options.  He said if it was stage 1, he would probably only need radiation but he may need radiation and chemo in which case we would have to talk about banking his sperm since there is a chance that the chemo could cause sterility.

After the PET Scan this wonderful Oncologist called us that night to tell us it was clear and left a message about it on our answering machine.  We went back a few days later and he said the results were clear and the only area of uptake was right where he had the nodule removed and that was due to scar tissue.  He told us that many doctors would not even go ahead with radiation based on these results but that we should see a Radiation Oncologist and he suggested a course of radiation on that area just to make sure if there was anything left it would be attacked and destroyed.  The good news was he would not need chemo, would not have to bank his sperm and he should have little discomfort from the treatments.  So after meeting with the Radiation Oncologist a few hours later, we signed on for 17 days of radiation.

Before the treatments could begin, a special mask had to be made of Michael’s face and neck. Then a team of Radiation Oncologists would determine the exact points the radiation had to be directed at.  After this was determined,  the treatments could start.  So for most of July and August every weekday we drove a long way for a few minutes of treatment.  The facility and staff were the best you could ask for.  They took Michael under their wing and every time we walked through the doors the other patients would take a deep breath and many times they would ask me what he had and remark about how young he was, they also told me they would pray for him.

Everyday we would wait with the same patients and you kind of form a family.  I even met two of my neighbors who were undergoing treatment which made me hyper aware of how many lives are affected by Cancer.  Toward the end of August we were finished with treatment and  the outlook was great. We would return in 2 months for a follow-up and a PET Scan at 3 months.  When we went back in to see our beloved Radiation Oncologist 2 months later he assured us that Michael was cured.  He even said that next month, we would not have to drive all the way back for the PET Scan results because he knew they were going to be clear.  We could opt just for a phone call, which we did.

So on December 1st we drove to the hospital for a PET Scan.  I tried calling Friday for results but they were not in, which I found a little odd given the first time how quickly they were read.  By Monday mid-morning I called again and told they had still not received them back but they would call me soon.

About an hour later, another Radiation Oncologist called me. Michael’s regular doctor was on vacation. He took forever to get to the point, but finally told me there was something suspicious on the PET Scan. Hearing those words, my heart seemed to stop.  This was hitting me harder than the original diagnosis, which I think was due to the fact that I was in complete shock then. Now, after undergoing the radiation treatments which were voluntary, and a prophylactic measure, hearing this news was devastating!

I was in disbelief, the Radiation Oncologist said he talked to Michael’s Oncologist and they were expecting my call and would get me right in.  They had Wednesday morning at 8 am as the soonest we could come in.  How was I going to go from now until Wednesday morning?

I was told that he would be examined and if anything was felt in that area he would be sent for a biopsy, if nothing was felt,  he would probably be sent for a repeat PET Scan in a few weeks and followed closely.  When calling the Oncologist, I just lost it, thankfully Michael was not home to see me.  It was really the first time I felt terrified, and it finally hit home that my son has Cancer.

I did wonder if the suspicious area could still be the scar tissue and that is what I am holding on to. However, if that was the case why didn’t the Radiation Oncologist mention that? Why did the Oncologist not call me the way he did with the results like before? Why did he want to sit down with Michael and his parents and go over everything? If I think too much about those questions, I will become paralyzed with fear. I can only pray it is scar tissue, pray that Michael will not have to undergo more surgery, treatments or pain. He has been handling everything so well and actually told me that we will take it as it comes. He is so strong, he is a remarkable young man!

I believe in the power of prayer and that is why I have put this very personal situation out here for anyone to read.  I do this because I consider many of you my friends and because many of you are mothers, and I know as mothers we pray for all children.  I post this because Cancer is not a secret that is whispered, but something that is affecting more lives than ever before.  Maybe I can help someone, maybe someone will reach out to me, maybe this will make a difference.  If I have enemies or stalkers that read this and rejoice that my son has Hodgkin’s Lymphoma then I really need to pray for them because they are very ill themselves and need God to work on their heart.  I know that the majority of my readers will take a moment to bow their heads and say a prayer and it is for that I post this.  God Bless You All!!!



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7 Responses to I Wear Violet For My Son!!!

  1. Diane Melendez

    Carolyn, I understand the position you are in and how terrifying it can be to not know exactly what is happening with your child. My oldest son faced a mysterious illness at the age of four which eight doctors told me he would not survive. He will turn 37 in January. His journey to health was long and frightening but we never ever thought he would not beat his illness. First and foremost, you must always know and believe that the good Lords love will see you, your son and family through this. It is important that you remain upbeat and positive as your son will take his cues from you. I know that is hard, but as one mother to another I know you can do it for him. Remember that doctors are just people and science is not perfect, but Gods love is. Expect the best and you will have it. Sometimes medical professionals do not use the best words when advising us of medical findings. Instead of saying there was an area that was suspicious, they could have said there was an area that may be scar tissue and they need to check it to make sure. The fact is it may just be that. I will pray for you and yours and just remind you that your sons problem was found early, he is strong and this will all turn out well. Love, trust and prayers will see you through.

    Warm regards,

  2. karenmed409

    I don’t know what to say – except that you are so in my daily thoughts and I wish I could do more to help your family. Please know that I am carrying you with us within our thoughts and prayers. So cry. Be angry. Be scared. Do what you need to do here so that you can continue to be strong there, OK?
    I will be wearing Violet. !
    Hugs, Karen (Gumma)

  3. Thank you for posting your personal story, I can’t imagine going through what you are and still trying keep yourself and family together going through this. We all know here that family comes first and that they are top priority above all. I am so glad they caught it early in your son. I hope you stay strong and also have others to talk to or cry to, know that it isn’t a weakness but a strength. Love is so powerful it can heal what others thought seemingly impossible, don’t give up hope. You need to take care of yourself too so that you can take care of others. Know that we all will be thinking of you and your family and that you are in our thoughts and prayers.

  4. Molly

    Always thinking of and praying for you all and especially Michael! You are so strong Carolyn…

  5. Jessica C.

    Michael, you and your family have and will continue to be in my prayers Carolyn

  6. Marsa McCool-Solis of Ourazfamily

    Thank you so much for sharing, I have written your son along with the rest of your family in my prayers. Cancer has effected our family and we pray for a day when there is a cure.
    Every parent should read your story or one of the far too many like it with the amount of people diagnosed every single day and remember to cherish every moment with those they love.
    Blessings, Marsa

  7. Marsa McCool-Solis of Ourazfamily

    I meant to say, I’ve written your son and the rest of your family in my prayer diary… Not I’ve written you in my prayers. Sorry for the typo!

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