Our superhero!

Our superhero!
Our superhero!

Friday, February 14, 2014

Engraftment and HOME!

We made it!  Ethan's new bone marrow engrafted on day 16.  Average with a sibling donor is day 19.  They gave him neupogen, a drug that helps your counts rebound faster, to help him get things going a little quicker.  They were worried about the paraflu that he had before going in causing more problems.  Right around engraftment, the mucusitis started going away, and he started to feel a little better.  They started to wean him from his narcotics, and started moving over from IV medicines to oral medicines.  This can be a little tricky with a little tummy that doesn't feel well, and with a tummy that hasn't eaten in weeks.  Overall, he did a really great job.  Medicine is still an issue.  It takes us about 2 hours each morning and night and A LOT of persuasion to get all of them down, but it does seem like it is starting to get a little easier.

This is his morning dose of medicine.  The two cups are mouth care, which he doesn't have to do at home anymore, but did 3-4 times a day in the hospital:

This is what we picked up from the pharmacy before we came home.  Apparently, Ethan was on the low end of medicines, compared to most bone marrow transplant kids.  I can't imagine more than this!

He saw a picture of a fellow cancer fighter when she got her bone marrow transplant with all of the pumps on her IV pole.  He was so excited to start getting more and more pumps!  Unfortunately, when he got up to his max, he was too sick to care anymore.  It was nice to see the pumps disappear one by one as we drew nearer to our coming home.

We got quite the list of cleaning that we have to do each day and week.  In order to get the house ready for Ethan to come home, we had to do a deep cleaning to eliminate as much dust and germs as possible because his immune system isn't working to full capacity, and won't for quite some time, so this is something we will have to maintain for a while as well.  These fabulous family and friends came to help me get it in order.  We literally cleaned the house from ceiling to floor.  The ladies were wonderful! My house has never been so clean!  And awesome Charles had the dirty job of cleaning all of the walls and ceilings!  I could never have done this without them!

At the end of treatment, it is tradition for cancer kids to "ring the bell".  They make it a special thing for the family, and the cancer child.  It is a huge milestone, because it means that from here on out (minus a few lumbar punctures with chemo in the spinal fluid), he is finished with actual treatments.  Now it will just be healing!  This is a video from his bell ringing ceremony. My parents were unable to make it because my dad just found out that he has prostate cancer, and had to go get some tests done himself on the day we rang the bell, but Merrill's parents came, and the kids came.  It was a lot of fun!

We came home 25 days after his transplant.  With the week we were in before this for radiation, this added up to 32 days of being inpatient.  It was such a wonderful thing to be able to come home and be together as a family!  The kids all wanted to be by Ethan.  I looked over, and this is what we saw.  Everyone as close as they could be to him.  It was so sweet!

These are the fun pictures of Ethan and Blake in their Donor and Recipient t-shirts.  Blake's says "bone marrow transplant donor", and Ethan's says "bone marrow transplant recipient".  They are so sweet together.  

And just a few more pictures from our stay!  Ethan grew quite attached to his blue throw up bags.  He has a list for Santa Claus, and these throw up bags with their holder (can't forget the holder) made it onto the list.  Not sure if it is funny or sad.  Probably a little of both!

Ethan LOVES legos!  We did hours and hours of building and playing with legos!  

Ethan with Daddy.  Not feeling so well at the moment.

I am so grateful for the many, many, MANY wonderful people we have in our lives.  There is not a day that goes by that I don't think of how much we have been blessed with so many people who help us in SO many ways!  This is not something that would easily be done alone, but I have never had that worry.  I can literally make one phone call, and have many helping hands ready to assist.  That in itself is a miracle and blessing.  

Sometimes I wonder- if I could rewind time, and somehow have the power to choose life without cancer, would I do it?  I can't say for sure.  This has definitely been (and still continues to be) a long, hard road.  But one thing I do know for certain, I would never have wanted to miss out on the things I have learned along the way.  I have learned of the innate goodness in people.  I have learned to never judge others because you don't know what they have going on in their lives.  I have learned what it feels like to be burdened with care greater than you ever before imagined, and have learned empathy.  I have learned even more personally the love of a loving Heavenly Father.  I have learned more personally how the atonement applies to me, and not only to me, but my loved ones.  I have literally felt my burdens lifted.  I have felt angels surrounding us.  I have truly seen miracles.  So while this road has been long and hard, there have also been many, many good things.  Things I could not have learned any other way.  For that, I am, and always will be grateful.

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