Guest blog entry from Chris:

On this Father’s Day, I’ve done a lot of reflecting.  There was a point in my life where I thought I might never become a father.  Then, an amazing woman walked into my life and has been by my side ever since.  She has not only given me the gift of becoming a dad, but has given me more life and love than I ever knew existed. 

Everyone who reads Marisa’s blog entries can see and feel her strength, but I want you to know that what you can’t see is what she does day-in and day-out to lift our family through these difficult days.  From waking up every night in the middle of the night, multiple times, to help Laila get back to sleep to taking her to the weekly chemo treatments, by herself, because with COVID, we can’t both go.  I could type 10 paragraphs explaining, but to sum it up in one sentence: Marisa is the foundation of our family.  I cannot imagine my life without her and am so lucky to have such a powerful woman as a partner.

As most of you know, Laila’s big surgery day is tomorrow.  This journey has included many ups and downs, but being brought up and educated in science and logic, I’ve relied on facts and statistics to remain positive. 

Over 85% of Wilms Tumor patients survive globally, which includes children who sadly don’t have the fortune of a world class hospital three miles down the road.  Our doctors include the #1 pathologist for Wilms Tumors in the world.  Every single Wilms image on earth makes its way across her desk.  Similar for the radiological oncologist.  Our surgeon is becoming one of the world’s foremost experts in tumor removal from children.  Our oncology team has treated these types of tumors for over 20 years and has perfected the “cocktail mix” of chemo.  Marisa genuinely calls our oncologist her new best friend.  Our pediatrician is not only the best, but we are fortunate to call her a close family friend.  She has gone above and beyond to help us get information and has given us love and support few can expect from their doctor.  These are facts.  And they’ve kept me calm and focused over the past seven weeks.

When Laila was first admitted to the hospital and eventually diagnosed, they said they didn’t want to perform the surgery on her, because the tumor was so large (12.5 cm) it was pressing against vital organs and bloodlines.  The surgery would be higher risk, so they opted to treat her with chemo to shrink it before removing it.  When she went for her imaging last Thursday, I told Marisa I fully expected them to say they couldn’t remove it because it was still too large.  So, you can imagine my shock, when I got a text from Marisa saying they were going to go forward with the surgery.

The reality is that her tumor has grown from 12.5 cm to 15.0 cm.  The doctors think it is dying and bleeding into itself and the blood has nowhere to go, so the outside is expanding.  When we spoke with our surgeon yesterday, he said the risk of the tumor rupturing in a typical Wilms surgery is about 10%, but because Laila’s is so large, it is 30% in her case.  If the tumor ruptures, they will clean everything out of her, but the chances of micro-cancerous cells getting into her body and not getting cleaned out increases significantly. 

If that happens, she will require more aggressive radiation in a larger part of her body, which could put her ability to have kids one day, at risk.  On top of all of that, they can’t use her biopsy incision due to the size, so they are going to have to cut her entire abdomen open, from side-to-side.  Clearly, the scars and pregnancy risk are far outweighed by us just wanting her to get through this surgery successfully, but I feel so bad that such an innocent soul has to endure these things.  The calmness and focus I’ve had for the past seven weeks have been rocked.  I’m more nervous than I’ve ever been for tomorrow.  I can’t compartmentalize any more.  The day has finally come, and the risks are both significant and real.

All of that being said, she is a fighter.  Muhammad Ali named his daughter Laila, who went on to an undefeated 24-0 boxing career.  Our Laila is about to get her first win by knocking this cancer out.  If the spirit and tenacity that we see her bring to life every day is any indication, cancer does not stand a chance.  Without the enlarged stomach, you would never know anything is wrong with her.  We are scared to death and wrought with anxiety, but she doesn’t even know what fear and anxiety are.  She only knows how to conquer this tumor inside of her, every single day.

I cannot do a blog entry without thanking every person who has supported us on this journey.  You have all given us new hope for humanity.  From dinners, to gifts for the girls, to offers to just listen, to texts/messages/posts and even “likes”, we have read and seen and loved every. single. thing. everyone has done.  To whoever the “anonymous” donors are from the Meal Train page, along with those who have shared their names, you have all changed our life for the better and given us more time to spend as a family.  We’ve been completely floored by the outreach.  I think Laila has people in half the countries of the world praying for her, and we can literally feel the positive energy and love that all of you are spreading for her.  From the bottom of our hearts, we will never be able to thank you enough for the strength you have given our family.  We love you all.

As it is Father’s Day, I want to thank my dad (and mom!) for raising me to have the strength to remain positive and the ability to help guide Laila and our family through this journey.  I can only hope to be half the dad you have been to me.  And to my father-in-law (and mother-in-law!), who drove almost nine hours to be here to support us, thank you for treating me like your third son, and for giving me the greatest gift anyone has ever given me in Marisa.

To my kids, you‘ve changed my life. I love you both more than I ever thought it was possible to love. Caia, your personality, humor and independent ferocity keep mom and me laughing and on our toes. You bring the comic relief we need in a time of sadness. Laila, our little warrior, you are already the strongest person I’ve ever met. I cannot wait to see what you become after conquering this. There is no ceiling to what you can do. You both have given us a second life that we will have the pleasure and fortune to experience for the rest of our living days. We love you so, so, so much!

Lastly, I cannot help but believe that if this much love and energy can be channeled into the care for one person and family, enough exits in all of us to channel the same care and love into the black community, who have been going through times far more difficult than we are going through for hundreds of years.  Our family stands behind all of you and cannot wait to get past this cancer so we can do more to support the #BLM movement.