Tony can really rock the beard. What a man.
June 9th was a big day for us. After dropping the five oldest kids at a friend's house for the day, we made the 45-minute trek up to Huntsman Cancer Institute.
Today was Tony's first scan of his brain since completing the combination chemotherapy and radiation three weeks ago. We both went into the appointment today with an idea of what could happen but unclear expectations of what came next.
As always, Amelia joined us for the day. Not only did we meet with Tony's doctor, but she had her very own appointment at Huntsman today! Amelia is a star at the hospital because as soon as we show up for a visit, the normally quiet clinic becomes a bustling arena with Amelia's coos and everyone's "awwws" as employees stand in line to hold her. She is such a beautiful miracle. While being passed around between all the nurses and coordinators in the clinic, a small cheek swab for DNA samples was collected from her mouth. In about six to eight weeks, we will receive the results for Amelia's genetic testing which will tell us if she is positive or negative for the gene (LFS) that Tony and three of her siblings have. If she is positive, she will join her three out five siblings each summer in having routine cancer screenings of her brain and body. If not, our little Lily (age 5) will think Amelia is even more her twin, as they both are toe heads with big bright blue eyes and matching elephant pajamas. The pajamas really seal the deal in Lily's eyes, and Lily is even convinced they have the same laugh :) I will post updates on Amelia once we get the news.
With Amelia entertained, Tony and I made our way to a room to meet with his doctors. The PA came in first to somewhat prepare the way for the news of the doctor. After a bit of small talk, the PA started pulling up Tony's imaging of his scan that morning and said "Your scans look horrible." Tony thought it was a joke but upon seeing the serious look on his face, he realized something was up. It is expected to have a lot of swelling and irritation in the brain shortly after radiation treatments, and with this scan being only three weeks out from the finish of those treatments, we expected some swelling. But this swelling really did look horrible. Tony's tumor is located in the right hemisphere of his brain, and it would be very fair to say that 3/4 of the right side of his brain had a lot of swelling and irritation. It was way more than what I was expecting. Our PA then turned to us and said all this enhancement on the scan could be from two different things (or a combination of both) that 1) the radiation really made an impact on his brain and as a result there just really was a lot of irritation, or 2) the tumor could be growing again. In his years as a PA, he had never seen anyone's tumor have growth while undergoing chemotherapy and radiation at the same time. It isn't impossible but definitely rare. He grabbed our neuro oncologist to give us his opinion and we were surprised to hear that he was unsure of what was going on. Could it just be swelling? Could it be tumor growth? Or could it be a combination? There is no way to know with a certainty by just seeing the image from the scan. The doctor (who I really feel is one of the best!) couldn't say with confidence that it was either or both. There is still so much unknown about the brain.
Where does this leave us now? Three options were presented. 1) Do nothing and repeat the scan in four weeks hoping irritation has subsided. 2) Wait as we try to get Tony approved for a clinical study in which he wouldn't be able to begin until at least three months out from the end of radiation treatments. 3) Opt to start a drug called Avastin which should halt any tumor growth and will reduce swelling, then re-scan the brain in five weeks to see what has happened.
The doctor, Tony, and I all agreed to begin Avastin treatments. We didn't feel confident in waiting a month without any treatments to see if any changes occurred. The fact that we are unsure if Tony will qualify for this particular clinical trial and going without treatments for another two months made us uneasy. So Tony will begin Avastin infusions next Thursday. I will take him for his treatments every two weeks where they will infuse the drug through an IV. The purpose of Avastin is to block the blood supply that feeds the tumor in order to stop the tumor from growing. Side effects should be pretty minimal, and it will give us an excuse to have a hot date for a few hours at the hospital every other week where I will definitely be bringing popcorn and a movie :) We will re-scan Tony's brain on July 14th to see what progress has been made.
Where there is great love, there are always miracles. As Tony was having his MRI scan this morning, I sat in the waiting room watching those around me. To be honest, Tony and I feel like babies at this hospital. Most patients are at a point in their lives where their children are grown or they are even retired. I watched as I saw spouses anxiously bounce their knees and twiddle their thumbs as they waited. A middle aged woman put her arms around her elderly father and told him that whatever they were facing, it would be okay because they were together. Nervous laughs and especially a lot of silent meditation was all around me. What were each of these families facing? What was in their future?
Faces often lit up as they walked past Amelia who would catch their eye and deliver the biggest "full body smiles" to them where she scrunches her arms and legs into her chest because she is just so very happy! Her refreshing youth and sweet spirit filled the room as I saw tensions begin to melt away a bit. To Amelia, life couldn't be better. She has no idea that her daddy is very sick. She is unaware that her time with her daddy may or may not be long. She doesn't understand the stress that an unclear future can put on a family. All she wants to do is love us and everyone she meets. Sometimes I can see in her face that she wants to say, "Please pass me around so I can brighten everyone's day!" Her beaming love is a testament to me. If we can love greatly, we can have great miracles. And maybe what she is trying to teach us is that the greatest miracle of all is that we can learn to love. Love is the most powerful force in existence. Love is what brings a family together and children into the world. Love is what pushes our souls to look outside ourselves and to help those around us. Through love we can be transformed as its literal power brings unending growth and improvement to our souls. And it is through Jesus Christ that the ultimate act of love makes it possible for us to achieve all these things.
Tony often says that the most frustrating thing for him in this life is the inability to express how much he loves others. I can so agree! I love my husband with all my heart and soul. Our children love him with such tenderness and purity. I have seen in our family and in our community that Tony is loved by so many.
Oh, how we all love you, Tony. With all this love beaming in our hearts, miracles have and will continue to happen. You are our miracle in our lives because you radiate love. And I still have hope that you can "tarry a bit longer" with us. God's plan is perfect because he loves you, I can promise that without a bit of doubt in my heart and mind.