Our superhero!

Our superhero!
Our superhero!

Wednesday, February 26, 2014

Learning to adjust to being home

While I am grateful beyond words to be home, it has taken quite the adjustment to get into the swing of things.  Then just when you feel like you are on top of it, meds change, or we have a busy couple of days with "normal" life, and get behind on cleaning.  I would rather clean my house 1000 times over just to be home though.

Right now, Ethan's list of medicine is large.  He has Septra (antibiotic), ursodiol (to protect his liver), omeprozole (to protect his stomach), fluconazole (anti-fungal), acyclovir (anti-viral), cyclosporine (to help prevent graft vs host disease), leucovorin (to help restore healthy cells), megestrol (appetite stimulant), benadryl, zofran, lorazepam, and promethazine (all as needed for nausea), and oxycodone (as needed for pain).

It takes us about 3 hours in the morning to get all of his medication down, and we are down to about 1 hour at night (HOORAY)!

Also, he has been doing IV nutrition at night.  It runs for 12 hours each night.  It is over a liter that runs into him, so he has been up every 2-3 hours each night going to the bathroom.  He is unable to get there by himself because he is hooked up to the IV, and his energy level isn't super high.  So we have been up with him.  It is almost like having a newborn!

Jerin has been our little nurse in training, and has really like to be a part of all of Ethan's care.  He can hook up the IV bag all by himself (with supervision, of course)!  

Ethan got taken off of IV nutrition yesterday.  Last night was his last night of doing it.  Now we do these little magnesium balls for only 1 hour each night.  I am hoping that now we will be able to get some sleep without so many potty breaks in the night!

This is Ethan's central line.  This is where he gets all of his IV treatments.  This is also where they administered chemo, do blood transfusions, blood draws, etc.  Almost everything can be done through his central line.  He has had this since July.  Before that, he had a port that sat underneath his skin which they would access with a needle when they needed to use it.  They needed this broviac for his bone marrow transplant because it has 2 lumens, and he had so many things going into his line at once that he needed the extra lumen.

This is showing the 2 lumens.

We have to flush Ethan's line with Saline and heplock them to keep them from clogging twice a day.  We also do dressing changes on the central line once a week, and change the claves on the end once a week.

This is daddy flushing his line for the night.

 Ethan's worst medicine to take is Cyclosporine, which helps prevent graft vs host disease.  It is the hardest medicine for Ethan to take.  This is Merrill trying to give it to him, but Ethan is "hiding".  Poor kid!

On top of Ethan's care, we have a lot of cleaning to do.  Every day, we have to dust, vacuum, empty garbages, and clean the sinks and counters in all of the bathrooms and the kitchen.  Every week, we basically have to wipe down everything from ceiling to floor (ceiling, walls, ceiling fans, on top of cupboards, on top of the fridge, heater vents, etc - anything that collects dust).  We also have to deep clean everything once a week.  It has been quite the job keeping up with it on top of keeping up with Ethan.  

I know I mention my fabulous friends and family a lot, but they are truly fabulous!  We have a neighbor who is in the process of hiring someone to come in and do the big wipe down once a week for us.  I can't tell you how much this will help.  Sometimes I feel like we are treading water.  Not only do we have the house and Ethan, but we have "regular" life too.  We have 5 other kids to take care of and get places.  Merrill works. Ethan is going into clinic once a week, my dad is doing his own treatments for prostate cancer that we have been trying to be supportive of.  This will just be such a HUGE help!  I am TRULY, TRULY blessed!

As for what the future holds, they are already weaning Ethan from his graft vs host medicine.  This is a new protocol for sibling donations to start it this early.  We will continue to go into clinic once a week.  Once Ethan reaches his 100 days on April 23rd (yes, we have counted and have it marked on our calendars), he will have a little more freedom, and medicines will start to drop slowly one by one.  Some he will have to be on for about a year, while others are not as long.  We still have a long road ahead of us, but as I said above, we have been truly blessed, and I have never felt like our family has had to do this alone.  This has been a HUGE group effort.  I am so grateful for that!

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.