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!

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.

Day 1 to 13 of our bone marrow transplant

In bone marrow transplant world, every day is numbered.  The day of your transplant is day 0, and then you number every day after that.  Today we are almost to our 2 week mark at day 13, and boy, has it been a roller coaster!

Our first week went about as expected.  Ethan was sick. He got mucusitis, which are like cankers in your mouth, down your throat and into your intestines. Thankfully Ethan's wasn't in his mouth, but he had a killer sore throat!  He was nauseous and completely stopped eating and for the most part stopped drinking.  He is living off of IV nutrition and fluids. He hasn't had energy, and has been having some bladder and bowel issues caused by all of the medicine that is going into his body right now.  His breathing was a little labored because of the paraflu that he had before he went into transplant, and the mucusitis closing off his airway.

Our second week was more of the same, only more intense.  His breathing became more labored, and he was put on oxygen.  We tried both a mask and a nasal cannula, but neither were working well enough for him.

The regular oxygen ended up not being enough, so we were sent down to the PICU (pediatric intensive care unit).  There he was put on positive high air flow.  

They tried to use this:

But Ethan wasn't going for that.  He fought them because he didn't want that on, so they settled on this:

After 2 days in the PICU, we were sent back up to our room in ICS.  The whole time we were in PICU, he just kept saying that he wanted to be inpatient, meaning he wanted to go back to our room, so he was happy to be back in a familiar place with familiar nurses.

The day we left the PICU, he also started fevering.  They said this was normal at that stage of transplant, but he had a fever off and on for 2 days. The fever is gone now, so that is good.

It has been so hard seeing him so sick and in pain.  He does 2-3 anti nausea medications, and he is on a dildaudid pump for pain (he was on a morphine pump, but it was giving him headaches).  He has several antibiotics, and he has some medicines to help him go to the bathroom since all of the other medications make that hard to do.  He is also doing some steroids to help reduce the inflammation in his throat.  The steroids are tricky because they could contribute to graft vs. host disease, but they were necessary to help him breath.  

Today Ethan has been breathing better and feeling better.  He has a white blood count of 200, which his new bone marrow produced all by itself!  This is a good sign that engraftment is in his future.  We are hoping that things are on the uphill now, but time will tell.

We have spent many sleepless nights both at the hospital and home.  There was one night that Merrill didn't get to bed until 9 am.  Ethan needs a lot throughout the night, and there are always nurses and BEEPING (oh, the beeping) of the monitors!  Blake decided he wanted to crawl out of his crib, so we are training him to sleep in his bed, but he has had a hard time with the transition, so even when we are home, we still don't get a good nights rest.  We just decided that we will not plan on sleeping, and if we happen to get a few hours in, we will be grateful!

I can't even begin to tell you how grateful I am to everyone who has taken such an interest in our family.  I am so grateful for the support we get from our family, friends, neighbors, and even people I don't know.  We are truly blessed to have such wonderful people in our lives!  THANK YOU from the bottom of our hearts!

Transplant day!

Finally!  The day we have been working towards since June!  Our morning started early.  Brayden and I got up at 4:30 to get ready.  We had to leave the house at 5:15 to get up to the hospital in time for Blake to check into same day surgery.

Blake had a lot of fun at first:

But then he decided this isn't all it's cracked up to be.  Doing vitals and putting THEIR pajamas on are not his favorite:

Going to the playroom waiting room to play made it all better though:

They gave him versed to make him relax, and took him back.  Then we waited.  Merrill was upstairs with Ethan, so I was grateful that Brayden was willing to come with me to help me.  He and Blake formed a special bond while we have been in and out of the hospital so much.

After about 1 1/2 hours, Blake was finished.  We went back to get him.  He was very, very sleepy!  We could move him around however we wanted, and this boy was NOT waking up!

After about 2 hours of waiting for him to wake up, they finally decided to wake him up with a cold wash cloth.  He woke up and enjoyed some nice applesauce.  

Then we headed to Ethan's room.  Brayden decided to veg on the hospital bed since Ethan was up playing!

After eating some lunch and waiting for a bit, we all donned our party hats.  It was time for a celebration!  They gave Ethan some Benadryl so he wouldn't have an allergic reaction to the bone marrow, so he was a little sleepy for his celebration :)

All of the available doctors and nurses came in to sing Happy BMT (bone marrow transplant) Birthday!  They are all wearing gowns and masks because Ethan has paraflu and rhinovirus.  They wear these to protect other kids from getting it too.

 They gave both Blake and Ethan gifts for Ethan's new "birthday", and to Blake for making his new birthday possible.

It is tradition for the staff to guess what day the transplant kids will engraft.  They make bets and put their money in the envelope.  Regardless of who wins, they give the money to Ethan!

My awesome hubby drew Ethan a lego batman on his whiteboard for him!

All of the staff signed Ethan's banner, and they hung it in his room:

Getting ready to hang up the bone marrow.  Double and triple checking everything!

This is Jordyn our nurse.  She is special to us because she started us on blinatumomab (our experimental drug that saved Ethan's life), and she was here to hang his bone marrow, which saved his life as well!

Here it is!  From Blake to Ethan in one day!  Blake's (and now Ethan's) bone marrow!  They do this just like a blood transfusion and put it into Ethan's central line.  This is the easy part for Ethan.

The cute brothers playing on Ethan's bed with daddy, or more like Blake hoarding all of Ethan's new cars :)

After an exhausting day, they both took a nap next to each other :)  I love them so much!

These are the t-shirts they gave Blake and Ethan.  Blake's says "donor", and Ethan's says "recipient".  We didn't get them on them before they fell asleep!

This is Blake's bandage on his back.  He has been such a trooper!

It has truly been an exhausting, wonderful, magical day.  I have been so worried about Blake having to go through this.  The boy has been amazing!  He was up and playing.  Climbing on things, jumping around, running, and laughing.  You can tell he is a little sore, but he is doing much better than expected!  He is our little miracle worker!  

Ethan has been up and down a little bit over the last week.  Today was a good day.  He was feeling well and having fun.

Now we just wait for engraftment.  The average for this is 21 days, but it ranges from about 2-6 weeks.  In the meantime, they will be watching for graft vs host disease, fevers, mucusitis and any type of infection or illness. 

I am so grateful to my Heavenly Father that we were able to do this today.  That the experimental drug worked.  That Blake was a perfect match.  That Ethan is doing so well.  That we have so many AMAZING people around us offering love and support in every way.  I have seen so many miracles and tender mercies throughout this whole process.