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Month: March 2018

Last LP

March 28, 2018 Uncategorized
March 28th, 2018     (Scott)  

On Monday (March 26th) we visited the infusion center for Maya’s final lumbar puncture and chemo infusion. This was a milestone that Sara and I didn’t fully recognize until we arrived that morning– the infusion center staff had set up a princess-party for Maya complete with Anna/Elsa balloons, gifts, and a cake! This amazing group of professionals has been with us since March 2016, and their care and compassion has made our frequent trips to Renown feel like visits to see family and friends as much as monitoring and treatment. We cannot thank them enough for cultivating an environment of comfort and healing within our journey of anxiety and uncertainty. 

Over the next three days, Maya will finish her last pulse of Decadron (steroid), and over the next three weeks she’ll continue to take her daily chemo med (oral 6mp). Her end date of treatment is April 21, 2018. And then we monitor and assess and get our heads straight about what’s next.

For the past 18 months or so, Maya has been in the ‘maintenance’ phase of treatment, and for nearly the entire time we’ve struggled to find the right dose of meds to maintain her numbers in the right range (ANC 750-1500). During this time we’ve seen her ANC anywhere from 200 to 4500, and her hemoglobin has been anywhere from 5.7 (transfusion low) to 11. While this is a moving target for any patient, and especially for those who are growing and changing so rapidly, Maya presented a unique challenge. Early in maintenance we began including allopurinol in her daily regimen which both helped and complicated the cocktail. I am happy to report that in the past two or three months, Maya’s numbers have slowly and consistently settled into the desired ranges with Monday’s numbers being better than almost any other point in treatment- ANC 1640, Hgb 10.3, Plt 300+. It’s funny that her system finally would start to cooperate right at the very end of treatment, but you know what they say– it’s not how you start, it’s how you finish. As Dr. Z commented, “She’s really stuck the landing.”

We are looking ahead to scheduling Maya’s port removal soon and enjoying many upcoming celebrations (MAY 26 in Carson @Shoetree Brewery!… there will be a bounce house!)

We look forward to seeing you all at some point this summer and thanking you in person for your love and support.

Thank you.

Blankets

March 5, 2018 Uncategorized

March 5th, 2018         (Sara)

If a home’s fullness of Love was measured by the number of blankets it had…ours would be overwhelmingly full. Even before Maya was diagnosed, we had many many blankets. Brand new blankets from the store that I bought or that were given to us by friends and family; new hand made blankets and quilts made for us by wonderful cousins or Aunties, friends, parents and grandparents…and great-grandparents. I even have my old “bunny blanket” laying around. It is terribly shabby and so worn it is falling apart. I keep meaning to fix it but…well it gets bumped on the “todo” list. Maya has now taken it even though the bunnies on it have faded to an every so humble…ivory with a hint of bunny.

Then Maya was diagnosed with leukemia.

And our collection grew. The first time I felt “wrapped” during this journey was from a shawl my cousin gave me because she knew what it was like to spend hours bedside with her child in the hospital. We needed a new blanket at the Family House and my step brother brought us one that is now folded over my couch down stairs. It isn’t my favorite blanket but there is something extremely comforting about it. When we arrived home, even more blankets made their way to our home. More hand made quilts and knitted blankets made for Maya by our colleagues. Softy blankets small, medium, and large for all of us. Light blankets and heavy blankets. Blankets offered by strangers and by the closest to our family. It is truly amazing. And interesting. When we grieve and need help, we are given all sorts of gifts. And why not blankets? They are the perfect symbol of love.

I now see blankets as a literal and figurative perception of how much Love and warmth this little girl and our family have been given in this life. It is as if the number of blankets given to us was the God’s saying “Look at your friends and family wrap you in support, in Love, in light”. And we really have always felt it from the beginning of this journey. Not because every person who loves us gave us a blanket….but because we have SO many now that our ottoman is bursting with compassion. Our shelves are lined with Love, and our beds are covered in beauty and hard work.

We continue to cuddle up with any given blanket and ponder what we all have been through over the last two years. It feels incredible that we are closing in on the final weeks of treatment yet still need that cozy blanket to feel a little more safe. 

Maya has been okay. Today better than ever. Over the last few weeks we have struggled keeping her healthy. She ultimately needed a recent transfusion of IVIG (intravenous immune globbulins). It is a bottle of immune proteins from 200 people from regions all over the world and we just hope that at least one of those people had antibodies for what ever Maya is fighting. She mostly suffers from a cough but with that comes sleepless nights, ear infections that won’t go away, and an amazing amount of snot.

After an initial fear of reaction from the IVIG, we were happy to try the transfusion but only to have come out 2 weeks later….about the same. No worse but really not incredibly better. The cough is still hanging around but just not as frequent. I apologize for my non-optimistic tone. She’s probably way better but…well I’m just tired.

We are all moving along and really looking forward to Aloha Chemo celebrations and healing ceremonies which I will be sharing more details of later this week. Please save the date for a local celebration here in Carson on May 26th. Also, we would LOVE to see anyone who might need a vacation on Kauai, June 24th. We all need to heal.

Also – I, Sara, will be shaving my head on St. Patricks day. I am doing this for many reasons but I mostly to raise money for childhood cancer research through St. Baldricks. I’m also doing this to honor my daughter, to honor my best friend April, to honor women…and to honor myself. If I had skin to shed – I would. Maya and Lincoln have agreed to me doing this and while Scott is pretty sure (as I am too!) that Imma look pretty funky for a while – none of us are afraid of this. Maya didn’t have a choice to go bald – as most cancer victims. But I do. I’m nervous (and well maybe a little scared) but I am proud to model strength for my children. Let them see a women’s worth and a family’s love transcend hair and social norms. I just really hope my head is a least a little round.

Thank you for your continued love and support…and blankets. Keep your eye out for details of celebrations.

P.s…Lincoln is THREE! A lot has happened since our last update….sorry.
Love is Life
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