Swapping Parents , High wind & Covid

The trip down to Oakland was uneventful and we spent a good portion of Monday in appointments at the hospital.  We were delighted to see our favorite social worker and a few other people we have met before, including the nurse who did BOTH of his stem cell harvests! 

Monday night was my turn to fly back home to be home with the girls for the week, so I flew home in what turned out to be some pretty crazy wind gusts that made my plane feel like it was being flown by a drunken pilot...or a mom playing mario kart...they are pretty much the same.  It was such a rough flight coming into Portland, that I wished we had been in Europe where the passengers clap when they land.  These pilots absolutely deserved a round of applause for landing in the crazy wind gusts that were up to 30, 40, or 60 miles per hour, depending on which weather report you watched.  I always say thank you to the flight attendants when I leave, but I asked them to please thank the pilots this time too! 

Jeremy and ZiLong went for hot pot after dropping me at the airport, and then the next day out to Auburn to visit Jeremy's parents.  They celebrated coming back to the hotel on Wednesday by getting hot pot again!

Meanwhile back in Portland...

Those who know me well know how much of a planner I am, so you should not be surprised to know that I have scheduled out the next 4 months of travel with a very clear and detailed schedule of exactly when Jeremy will be down in Oakland, when I will be in Oakland, who is flying on what day, etc.  So...this is when the universe takes over and says "nope, my turn" because after feeling a cold getting slightly worse every day since Saturday, I took a Covid test and yes...I have Covid.  Fortunately Jeremy is negative and ZiLong did his Covid test this afternoon, still waiting on results but he does not have any symptoms.  However...because I have Covid our travel has had to adjust a bit.  Instead of me getting back Sunday to be there for his surgery Monday, I can't see ZiLong until Tuesday (10 days past onset of Symptoms.  It means a bit of moving around flights and I can't be there for ZiLong's surgery, but in the grand scheme of things, a day and a half delay is okay. 

Travel Day!

This week has flown by! We are so blessed by the outpouring of love from so many people. ZiLong seems to be feeling ready, and we are so incredibly grateful for the kindness and love from our community. We had a going away party for ZiLong on Friday for school friends and a sleepover with a few of them, a surprise farewell visit and some sweet hospital gifts from friends, and a last soccer game with a surprise soccer ball gift signed by his whole team. We are humbled by the incredible outpouring of love and thoughtful words, support and gifts from so many people around us.

Special gratitude to Beth & Jim and family, Lisa and family, the Fischers, Stephanie & Greg and family, Miki and family, Ken snd Debbie, and so many more for all of the kind gifts, wishes and offers of support while ZiLong goes through this process.  It has definitely made this trip start much easier for ZiLong knowing how many people are rooting him on back at home.

We packed the car yesterday and set off this morning at 6:20, arriving just before 6 tonight.  It was a smooth (though rainy!) drive and we were grateful for no snow going over Shasta!

ZiLong has several appointments tomorrow morning and I fly home in the evening leaving Jeremy and ZiLong to navigate the week here before I return Sunday.

T minus 2!

One of ZiLong's two Chinese teachers had a going away party for him on Wednesday! It was such a kind and thoughtful thing to do, and we are so grateful!  Ms Bee had the whole class sign a card for him to wish him well during his transplant and she gifted him a beautiful basket full of fun things for the hospital, including a few chinese books so he could get some reading in!)

She made these beautiful placemats that were at every student's seat:

I brought Pizza for the party- kids were very happy!

This is Ms Bee- we just love her!

The whole class! 

Tonight ZiLong is having a small going away party with friends at our house- tomorrow we pack the car, he has his first soccer game of the spring (and last), Maddie has a choir concert, and we leave bright and early Sunday morning!
 

T - 4 and counting!

We are 4 days out from leaving for Oakland for ZiLong's gene therapy.  

For those who are not familiar with what this is, here is a short explanation. 

ZiLong was born with Beta Thalassemia Major.  This is a rare blood disorder (though less rare in Asia) which means his body does not make hemoglobin.  Hemoglobin is the part of your blood that carries oxygen, and without this, you cannot live.  He has been getting blood transfusions every 3-4 weeks since he was diagnosed at about 6 months old in China.  He has done blood transfusions with his birth family, while in the orphanage, and since joining our family.  In some ways, this is the only constant he has had in his life through all of the changes.  

Hospital visits normally take about 3/4 of a day, but associated appointments like twice annual MRI's, annual extensive vision and hearing checks to ensure no iron buildup in those areas, EKG's, echocardiograms, all start to add up.   

Two years ago, a pharmaceutical company called Bluebird licensed their Zynteglo technology after many years of trials.  This technology takes his own stem cells and edits them to essentially tell them to make hemoglobin.

The first step is to harvest the cells- this happened in April last year, and again in November this year due to some issues at Bluebird that caused his first batch of cells to be ruined.  It was a bummer, but I think we really made the best out of it and in the long run, this timing is better.  Because of having to start over again, we were able to squeeze a trip in and meet ZiLong's birthfather and extended family for the first time in September!  THAT was an amazing experience! 

His cells are now ready, and we now start the next phase of the process with is definitely a lot harder.  Gene therapy is a stem cell transplant.  This means that he will go into the hospital, have high dose chemotherapy to kill off his bone marrow, and then they will infuse the edited stem cells.  Then we wait  His blood counts will all go down very very low, and then they will start to climb.  We anticipate being in the hospital around 6 weeks, and will need to stay in the Oakland area for 100 days post transplant.  

Preparing to be away for 4 months is a lot of work, and we are powering through.  At this point all I can see really is the day I am in and the day ahead of me.  There is so much going on and preparation that I literally cannot think  more than a day ahead at this point!

Yesterday was ZiLong's last appointment in Portland before we leave- the semi-annual MRI.  He is in good sprits and is worried about going down, but we know we will all get through this! 

He has an amazon wish list for his time in the hospital, and I will have an Oakland address in a week that I can share as well. Amazon Wish list

More updates next week!

Last transfusion at Dornbecher!  2 years ago we started down this stem cell transplant path- we had a very clear timeline in mind at the time, something we have since learned is impossible in the world of gene editing!  It turns out life happens on its own timeline, and, it turns out, that is okay.  Some people say it's the universe in control, some people say it's in God's timing, some people say it's a matter of the people involved.  No matter what your belief, the result is the same.  In most all things I've found, there is both good and bad in life happening at it's own pace.  Usually, it turns out net positive in the end, even if it feels challenging in the interim.  

Our realtor told us years ago when we were outbid by someone on our first house together not to worry, because the one we get will ultimately be better, it always is. And she was right.  The same goes here.  We thought we had the perfect timing to start last summer in June- but when ZiLong's first stem cells were destroyed by accident, and when the timing was thrown completely out of whack, we despaired.  ZiLong was instantly ready to start again, then sad, then angry, and at one point wanted to cancel the entire thing altogether.  But we found our way out of that feeling of despair and made the best of it.  We helped him put together a pre-transplant bucket list of all the fun things to do before transplant.  He got to start middle school in person, and ultimately that timing is SO MUCH BETTER than what we originally planned for!  We got to take a trip to China before transplant to see his China Baba and meet his extended family!  These are all things that would not have happened had  his transplant happened on the original timing.

So here we are now 2 years after starting this process at his last transfusion before we leave for his transplant.  93 transfusions since coming home, probably close to 175 transfusions in his life thus far, and we are getting ready to embark on this next step.  It's a fun day to say thanks to all of the nurses and the child life team we have spent so many years getting to know, and enjoy a last visit with his Joy RX mentor, and share joy in how far he has come in his 6.5 years here.  In 2.5 weeks, we will be down in Oakland!