The Eye of The Storm

Family matters-2

Many of you have been asking for an update on the hubs. I don’t want to make this a regular thing on B&C but I do want to keep everyone updated who is interested. I have (with the help of a friend) created a “Family Matters” tab at the top of the site for family updates. I will try to keep it current while not being in your face all the time with all things cancer. Nobody wants to read that….not even me. In fact, I don’t even like to write about it. But that being said it’s important for our family and friends who are far away to keep up with us. And I simply cannot continue to have the same conversations over and over and over again. So here’s my first installment in the Family Matters category.

We have been in the “eye of the storm” if you will. You see after initial diagnosis life becomes a flurry of appointments, scans, surgeries, and tasks. It is torrential. It is all consuming. But the past few weeks it has all but stopped. We have simply been in a holding pattern waiting for him to heal. And trying to make a decision. 

You see he is considered a high risk for recurrent disease. Unfortunately the type of tumor he had was what is called “amelanotic melanoma” which means it was flesh colored. It’s fairly rare and doesn’t come with the hallmark warning signs of the disease. What generally happens in people who have this type of tumor is that it is allowed to get much larger than one normally would. This is exactly what happened to us. His primary tumor was 3.2 mm which in the world of melanoma is actually quite large. 

The other issue we have is that it had spread to his lymph nodes. He underwent 2 different surgeries within 3 weeks of each other to remove all of the lymph nodes under his right arm. The first surgery removed 4 nodes and there was evidence of disease in 3 of them. The second surgery removed 19 nodes which all came back cancer free!

However, because of his “high risk” status the standard of care is for him to undergo adjuvant therapy. Adjuvant therapy means treatment in the absence of any measurable disease. Basically, we are fighting what we can’t see. There is no way to know whether there are microscopic melanoma cells circulating through his body just waiting to colonize somewhere. Melanoma is quite a nasty cancer. It likes to come back. It likes to come back in different places (specifically the lungs, liver or brain). In order for anything to be seen on a scan (PET or MRI) it must be at least a 1 cm tumor. Now a 1 cm tumor is pretty freaking huge considering it was only a 3.2 mm tumor that got us into this whole mess.

So our options have been laid out for us and we have agonized (and boy do I mean AGONIZED) over them. Stage 3 melanoma just doesn’t have great options as far as therapy. In fact, there is only one drug approved by the FDA for adjuvant therapy. There is a lot of research going on for stage 3 but sadly we were unable to qualify for any of the current clinical trials. 

We met with our oncologist this morning and found out she has been fighting our insurance the past few weeks to try and get an alternate drug approved. Unfortunately she didn’t win that fight. So this left us with pretty much only one option: a one year course of Interferon. This is a tough pill to swallow as this drug has a reputation for being one of the nastiest drugs on the market as far as side effects go. However, we have made the choice to move forward. There are several factors that have gone into this decision. The biggest decider has been our children’s ages. They are 6, 4 and 16 months. He feels (we feel) that if it takes a year of hell to be able to watch them graduate high school then it’s the least he could do. Second, his age. He turns 40 in 2 weeks. He is ridiculously young and has so much left to do in life. Lastly, if years down the road the cancer returned we would be kicking ourselves for not taking every possible measure to prevent it. So that being said we have made our decision.

The interferon begins with a high dose for the first month. This will be 2 hour infusions 5 days a week. He will be treated at our local cancer center. After the first month he will switch to self-administered injections 3 times a week. This treatment will last for 48 weeks. 

We are grateful to not have to travel to be able to get his treatment. And we are even more grateful that his step mom is an infusion nurse at the facility. She has handpicked our nurse and our educator and everyone that will be taking care of us. We are grateful his father is retired and will be able to help us with transportation and care. We are extraordinarily grateful for our nanny Ms Betty who has made concerns about the children’s care all but nonexistent.

We have two weeks to breathe before our battle begins and it will be an epic two weeks. We leave this Saturday to take our older children to Disney World for the first time. We will spend 6 days in the parks meeting princesses and mice, riding roller coasters, and making fantastic memories. When we return we have his 40th birthday and party to look forward to. I feel very strongly about making sure we do it up big this year and I am considering an adult-sized bounce house. Although one of my friends is looking into an ice luge to enhance our shenanigans. We will take these two weeks and enjoy the ease, for it will get hard. It will not be impossible but it will be hard.

On Monday October 5 we will begin our journey as he gets his first dose. We are fighting. Thank you all for your support and your concern.

27 thoughts on “The Eye of The Storm

  1. Enjoy these two weeks and know I’m sending you all lots of love and hugs. You’ll be in my thoughts and prayers and you absolutely know I am but a phone call or text away at anytime, day or night.

  2. Thanks, Ashford, for the detailed update on David and your family’s situation. We send our love and prayers. Please keep us updated on developments.

  3. Lauren…….thanks so much for this update and sharing this personal, difficult information with all of us who care about you and your family. I hope you have a wonderful, fun-filled time at Disney World……what a great thing to do before David starts treatment. You and your precious family are in our thoughts and prayers.

  4. Lauren, so sorry to hear this news. I know your faith, family and sense of humor will carry you all through this journey. Prayers for all of your sweet family.

    1. Thank you honey. Although I must admit my sense of humor has gotten increasingly dark these last few weeks. (Like not fit for public consumption kind of dark.) But if you can’t laugh at the horrible things in life you will spend your whole life miserable.

    1. We are really really excited. And it’s just so (dare I say) amazing that the timing worked out to still be able to go despite all the crazy that has been thrown our way.

  5. Lauren, I am so reminded by David’s melanoma of newborn Cole’s liver disease 13 years ago and his liver transplant the next year. What a traumatic time that was. I felt that God was putting his finger under our chins and turning our faces up toward him. It was if he was saying, “Look at my face. Trust in me. I will hold your hands, walk with you, and even carry you if necessary through this fiery trial.” And our almighty powerful God did just that! We will pray mightily for you, David, Riley, Camp, and Knox through this rough valley. We will love you with all our hearts and support you along the way. We will remember that God’s amazing grace is still amazing. Much love to you all.

  6. Thank you to you and your hubby for sharing your story, I was hoping to read an update. You never know how many other people you have made aware of this type of cancer just by writing your blog post. Sending love and best wishes for a fabulous family holiday, from NZ, xx Andrea xx

  7. Keeping you and your family in our thoughts and prayers at all times! Please know that you can call me anytime for anything!

  8. Lauren thanks for the update. Bruce and I were glad to hear your high spirits and determination. Please know we are praying for you,David and your young children. Keep the faith and love.
    Always, Cheryl and Bruce

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