Share. Connect. Love.

Posted 2017-02-10T18:30:00Z

I do not think we know our own strength until we have seen how strong LOVE makes us.

ROUND ONE RECOVERY...

Thank you for visiting our site to follow along as Billy's journey continues...I billieve my last post left off with our return home from our hospital portion of treatment, Round 1.

We arrived home that Tuesday afternoon, December 27, to find Daddy ripping/rolling up the drenched basement carpet and tearing out ALL the walls a third of the way up from the floor. It was quite a scene, really, and a tremendous challenge to get Billy Boy settled and comfortable, sterilize the areas he would be exposed to, unpack and organize his meds regimen for his first five days at home (there were 6). The medication I needed to pay closest attention to was the prednisone as it had very specific and different daily dosing instructions that would gradually decrease to zero within five days.

I remember Spiro had spent the night at a friend's the night before and, around 5 pm, burst through the laundry room door and into the kitchen. He didn't even have his coat off when my heart landed in my stomach...the left side of his neck was extremely swollen! I nearly dropped at the sight of him. The only way to describe the way he looked is to say he appeared to be half Spiro and half ALFRED HITCHCOCK! For those of you too young to remember Alfred, please google images to understand the magnitude of our shock, instant fear and worry. We were in the ER within minutes, leaving Billy to relax with his older brothers. Spiro didn't seem to think the trip was necessary nor could he understand the extent of our worry. My husband and I could NOT believe the progression of unfortunate events but tried to take them one at a time in order to stay calm and hopeful. After a two hour wait to be seen, a brief examination and some blood work Spiro was put on Bactrim, an antibiotic. Doctors were unable to conclude what exactly was going on with Spiro at that point. They ruled out anything tooth related (as did our dear friend Jim Limperis when we reached out to him that evening) and "theorized" it was POSSIBLE Spiro had a stone in his salivary gland. A what? Yes...that's what they guessed, even though stones of that type were uncommon in children his age. Needless to say we found ZERO comfort in their diagnosis but started Spiro on the Bactrim immediately. The next morning I took Spiro with Billy and me to Lurie Children's for Billy's spinal tap/treatment. In light of what brother Billy was going through I thought it was a very good idea to have his doctors examine Spiro, too. I remember feeling incredibly anxious until the moment Billy's CPN, Arica, assured me Spiro's lump had nothing to do with lymphoma WHATSOEVER. Relief...tears...deep breaths...shoulders down. Alas, we could focus our healing prayers and energy back to Billy Boy who had only just begun the fight for his life.

In the next few days Spiro's swelling responded to the Bactrim. Billy Boy was gradually weaned off the prednisone and THAT was a tremendous relief for everyone at home. I mention this because prednisone can have some serious side effects...one of which are mood swings and edginess and another is increased appetite. The increase in appetite was far easier to deal with, of course, as long as I could hand Billy a carb every time he was hungry. I could NOT give the boy enough wings, pizza and Portillo's!!! As wrong as it felt to do so, his doctors had encouraged us to LET THE BOY EAT WHATEVER HE WANTS!!  We did. The mood swings/edginess was not quite as easy to handle. It hurt my heart to see an impostor living inside my son's body and even more to see how it impacted the rest of our family. At times he was not himself and it appeared he had no control over the drastic changes in his personality. We were prepared for this in conversations with his doctors and our social worker and had several discussions with his siblings in order to prepare them to dismiss and forgive everything. It would be critical for all of us to realize the Billy's personality would be altered BECAUSE of the steroids and that, once he was no longer taking them, our sweet Billy Boy would be ours again. I can only say that it became quite a challenge for Melina and Spiro to manage the days until Billy was off the the prednisone. There were some tears from hurt feelings but, all in all, I can say I am extremely proud of them for indulging their brother as much as they did and am so glad the final 10 days of recovery were steroid FREE!!!

Sunday, January 1 HAPPY NEW YEAR...indeed!

We ALL slept in a bit this morning after staying up to ring in the NEW YEAR with everyone the night before. We toasted with Martinelli's "champagne" at the stroke of 12 and piled on Billy wishing him GOOD health and happiness as the year began! Later that morning we cut, as tradition would have it, our family Vasilopita. This special home-made sweet bread is cut every year on January 1 and has a single foil-wrapped coin baked inside it. The bread is cut into pieces and passed out to each family member. A piece for our Lord and Savior, Jesus Christ, is also cut along with a piece for our HOME. The recipient of the coin is thought to be blessed with luck for the entire year ahead. I must confess that Billy Boy has received the lucky coin many times in the last several years but THIS year...he would have to share it with sister, Melina!! The coin was hovering between BOTH pieces but ultimately clung to Melina's as the bread was pulled apart. Such fun and Melina was so exicted to FINALLY own a lucky coin...her FIRST!! The rest of the day was filled with board games, naps, snacks and a game of MAFIA, our family favorite. The most memorable event of the day, however, was when all four of Billy Boy's brothers decided to SHAVE their heads in solidarity to honor Billy's fight!! Billy had not experienced any significant hair loss to that point but the boys felt the action would make Billy feel tremendously loved and supported when his hair DID begin to disappear. Andrew (AKA Andreas the Barber) took the clippers and neatly cleaned up Billy's already shaved head and then proceeded to shave Johnny and Peter's, as well. They weren't bashful about it...taking it down to a level one right from the start. Last, and a bit reluctantly I might add, was Spiro (brother Peter did the honors). Before we knew it we had an unforgettably unselfish group of brothers surrounding Billy on the couch for a picture that would capture the moment forever. I was so proud of all of them and I know it meant the world to Billy Boy.

Sunday, January 8 HAPPY BIRTHDAY, BILLY (and Melina)!

This was a glorious day for all of us. It began with church where Father Peter and Father Kosmas cut the parish Vasilopita and invited me up to accept a piece on behalf of Billy Boy. It had the LUCKY coin in it and when I brought it home to Billy he was overjoyed!! He felt so blessed in that moment that his spiritual fathers made sure he received a piece of the special bread. After church we went to Billy's favorite breakfast place, Elly's, with the entire family. Later that day Peter set up the fish tank he bought the twins as their birthday present. The three of them had so much fun putting in the various tank accessories/decorations Peter had taken the time to pick out. They named their fish Nina and Bear and the duo sit on a table in a corner of our kitchen for all of us to enjoy.

Benihana has ALWAYS been the dinner destination of choice for Billy and Melina's birthday... and this year was no different. They LOVE hibachi cooking and, frankly, we all enjoy the food and atmosphere year in and year out. All nine of us (Johnny's lovely Megan, too) surrounded our chef and applauded him as he flipped shrimp into our mouths and pushed the tower of onions made to look like the smoke stack of a train across the super hot griddle...whispering "choo-choo..." It never gets old :)

The last few days of course #1 were good days for Billy Boy and we ALL enjoyed them. His spirits were good and he felt well enough to attend a couple of Melina's school basketball games on January 11 and 12. I could see how fun it was for him to be out of the house enjoying some normal activity. He loved seeing his friends and everyone was so excited to see him, catch up on how he was doing, and encourage him for the rest of his journey. It was a bit bittersweet for this momma as I was well aware we were checking in for ROUND 2 on Friday, January 13. Having walked course 1 with Billy Boy I knew what was in store and it hurt my heart to know he would, once again, be faced with EXACTLY the same course of chemotherapy meds and the very same side effects, as well.  But, I had to look at the next three weeks as another GIANT step closer to GOOD HEALTH and continue to encourage our family to move forward with faith and confidence that Billy Boy was going to BEAT lymphoma and, in no time, we would all look back on this event and be incredibly grateful for the unexpected and unforgettable moments of joy we experienced along the way.

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Comments (3)

  • Aimee Lanphere
    Aimee Lanphere

    My heart goes out to you. My son had Burkitt's. If you would like to contact me, I am very willing to help in anyway possible. I also have some contacts at the Lymphoma Research Foundation. Aimee Lanphere, 224-558-6359 [email protected]

    2 years ago · Reply
  • Kelli Sorkin
    Kelli Sorkin

    Elizabeth, Thank you for sharing this story, for the many, many people who are rooting for Billy's complete recovery, and who are in awe of the strength of your wonderful family. Much love to you! Kelli (and the Sorkin family)

    2 years ago · Reply
  • Jess salsman
    Jess salsman

    Sister, you are the greatest and we all know this will be soon in your rear view mirror. Your strength and faith will endure. The west coast Salsman family is in your corner forever. I love you all 💪💓

    2 years ago · Reply