Seb & Zek

Been reminiscing a lot about lockdown days lately.
          
          It was just Yaya, Lula, Maddie, Maze, Bengala, Axel, Zek (who didn’t have anywhere to go to when lockdown shut everything down so suddenly) and I at our home in italy, we were driving each other crazy.
          
          Maddie got on here, she would post a lot about us, there was no school so she was ALWAYS reading or writing, it was peak WDW phase so that’s how she found a bunch of people that liked them as well.
          
          It was one day at a time. We lost a baby brother, we were grieving Hattie already, the world seemed like it was ending. But in all the bad there was good. Our family was together, Maddie was alive and we really thought her cancer would never come back, we thought our parents were done having kids, we were apparently very fit as I look at my Snapchat memories from that crazy time and see pictures of us in the backyard doing yoga (?) and swimming every day, my mum was alive…
          
          So much has changed, I’m not grateful for COVID as it ruined my life with the damage it did to my body and quality of my life. I’m just grateful we had that period of lockdown to remember just how much we loved each other.
          
          

Happy anniversary Zee.
          
          You changed my life completely, you held and waited and loved me even when I was being such a piece of garbage. You stayed.
          
          We said yes two years ago. How crazy no? I love you. Our little family. Our life. Your way of thinking and understanding. 

February is a good month to beat cancer.
          
          My first time fighting leukemia we wrapped up treatment February of 2009.
          
          Maddie was done with the treatment for her initial cancer February of 2018.
          
          Maze is done with treatment February of 2026.
          
          It is also the month I married the love of my life. 
          
          It’s a great month. I need to keep believing that.

We. Are. Done.
          
          How crazy is that to say.
          
          Maze is done with MAP. We are scanning to see if we are finishing chemo with clean scans or not, but we are certain that will be the case and there will be no more chemo in our future.
          
          mepact will continue until spring, but that’s just immunotherapy to make sure no cancer has the chance to develop.
          
          Maze is ringing that bell. Save the date.

Time has definitely flown by but also not at the same time, we are officially on the last few DAYS of our chemo journey.
          
          I say chemo and not cancer journey because that will never be over, every single 3, 6 and 12 month scans we will do following finishing active treatment will still be a necessity, and with the gene mutation, there is always the risk of the disease coming back or another type of it developing.
          
          But chemo is almost over, we will take that.

When your little sister is 11, she will beat a rare and aggressive type of cancer with little research, the doctors will tell your family that she has no big risk of it coming back or developing secondary cancers down the line.
          
          That is a lie, your little sister will pass away from a even more rare and aggressive leukemia at 16.
          

Merry Christmas to all who celebrate!
          
          We had a wonderful Chanukkah this year and all the kids were so happy, it’s been weird not being in the home we thought we’d spend every single holiday in, but anywhere with the kids is amazing.
          
          Maze update: if all goes well and all of his scans continue being NED, we will be done with chemo in February.
          
          We are so close to the finish line for active treatment and he’s doing amazing, his stupid cancer has responded perfectly to MAP and nothing new has appeared, those were exactly the news we needed.

Sometimes, the fear of Maddie being forgotten consumes me. 
          
          Then I get a text from a friend of hers telling me how much they miss her or sending me pictures of something they did in her honour and my fear calms down. She’s not forgotten.

Yesterday we celebrated Maddie and Lula’s 19th birthday, and I still can’t wrap my head around how fast time has moved. 
          
          My little sisters… aren’t little anymore. One is off chasing her future, the other lives in memories and signs that appear when I need them most.
          
          Lula: you are the most incredible uni student I know. You work so hard, you push through everything life puts in front of you, and you still find a way to brighten every room you walk into. Your life hasn’t been simple or fair, but you’ve never let that stop you. Keep going. Keep dreaming big. Keep proving to yourself  that you’re capable of anything. We’re already so proud of you.
          
          And Maddie… there are no words that don’t ache. I don’t know who you would’ve been today. I don’t know how your laugh, your style, your music taste, your future would’ve unfolded. All I know is that the years I got to be your older brother were warmer, louder, fuller than these last two without you. I miss you in every version of myself. I love you forever and whenever, love you with all my heart, because you loved The Beatles, and you made sure we all heard every lyric.
          
          Thank you for blasting all the WDW songs back-to-back in my playlist yesterday I know it was you. I needed to feel you close.
          
          You twins changed the rhythm of our family the second you arrived. You came in like a force and taught us what it meant to live fully.
          
          To 19 and many more, Lula.
          And Maddie… 16 years will never feel like enough

We'll be posting a book that was left behind on maddie’s account as her 19th birthday gets closer.
          
          Our lives feel empty, but its also comforting to know she left something like this behind.