I'm not going to lie. As good as it was to be home, it was kind of hard to adjust.
First, it was hard to leave the security of our team in Seattle. We miss the SCCA and especially our nurse, Cindy. It was comforting to have our medical team giving us instruction and the hospital just five minutes away. It was so convenient to order prescriptions, pick up supplies and schedule transfusions and appointments. Now it just takes a little more foresight and coordination.
I think I can better understand what it
must feel like to come home from a mission. It's a bit of an
adjustment to get back to normal life. Life in Seattle was very
structured and focused with our lives revolving around appointments,
medications, and infusions. It has been a challenge to maintain the
kind of structure needed to ensure all of Nate's meds are on time
while living in the chaotic atmosphere of a family.
Sometimes I feel like I have PTSD. I
know too many people who have died. I have images I can't shake of
patients I couldn't believe were still alive. I realize more than
ever how fragile mortality is. There is a great benefit to be with others who
are going through the same thing, but towards the end I started
looking forward to going home and being friends with people who were
going to stay alive.
I really expected our last meeting at
the SCCA to be more celebratory. We had finally gotten rid of the
cancer! Nate had been in remission for three months! Instead it was a
bitter reminder of how close we had come to not even having the
transplant and how the odds of remaining cancer free are stacked
against us. I still believe we have been granted a miracle. I expect
Nathan to make a full recovery, and even if that is not the case,
every day we have because of it I will count as a miracle. Still, I
will sleep a lot better when we are a year out and it will get easier
until cancer is just a distant memory. Instead, I sometimes go through
a mental checklist balancing of the facts for and against us.
Soon after we got home, I got a text
from my friend in Seattle that her husband would not be seeking
further treatment. He had been almost a year out from transplant when
they learned the cancer had returned and they headed up to Seattle
for a trial. The trial put him back in remission but had such awful
side effects they decided to try a DLI – the process of infusing
the donor's t-cells – kind of like a jump start transplant. We had
dinner with them just days before they found out that cancer had
returned again. He looked so great! Yesterday, less than two weeks
since they had received the bad news, he passed away. For the last
twenty-four hours I have simultaneously felt numb and a vast array of
emotions.
Life hasn't felt normal for so long and
it's strange to think that everything just carried on without us.
Before we left I home schooled and now everyone is attending public
school. While they are doing great and I know it is the right thing
to do, I hate seeing them leave every morning. I've had to jump into
a new routine but things are starting to run smoother. When we came
home for Christmas, my mom had the house clean, laundry done and
fridge and pantry stocked. After Christmas, we took the three
youngest back up to Seattle with us. We just couldn't leave them
again! The older kids said they could fend for themselves so the
grandmas got a break. Let's just say that coming home to a house with
four kids on Christmas break was a little a lot different then
coming home for Christmas! Trying to get caught up was difficult
because the kids needed so much attention and I wanted to give it to
them, but I don't function well in chaos. Slowly things are getting back together.
It's funny, because even though Peter's the youngest he has the
opportunity to experience the same sibling jealousy that older kids
have when a new baby is brought home. He had 100% of my attention for
six months and now he has to share with his older sisters. Every time
I would hold them he would run over and want on my lap and try to
push them off! He also started nursing like a newborn, silly guy.
When he isn't wanting my attention, he is BUSY exploring our house.
He has climbed into a bathroom sink and turned the water on, almost
electrocuted himself, fallen down the stairs, and eaten laundry soap
three times. In my defense, the reason why I didn't hide the soap
better after the first time was because I really didn't think he
would try it again.
Almost every night Eliza, Norah, and of
course Peter, end up in our bed. Luckily we have an extra twin in the
school room, from when Nate's mom would come to visit, that Nathan
moves to when it get's too crowded. In hindsight, I think buying a
king sized bed early in our marriage would have been a good
investment! The kids handled us being gone pretty well, but Eliza and Norah still need extra attention. They are very clingy, have had nightmares, and I've had to reassure Eliza that I won't be going to Seattle again.
Nathan is looking better all the time.
We marvel at his bushy eyebrows and lush long lashes. I had forgotten
that even is hands were hairy! :) Since everything is coming back so
strong I guess there is even hope for the top of his head! Recovery
is still a full time job for him. He sleeps a lot. He has physical
therapy twice a week and a doctors appointment in Yakima once a week.
He still has a tons of medication and is on IV fluids. Unfortunately
he is still sick sometimes and has to take anti-nausea or pain
medication, but that is becoming less frequent. When he feels well he
has started taking over more of his care and that has been a great
help. I'm glad we spent six months in Seattle so we feel
comfortable with managing these things. Our doctor's office in Yakima
even looks to us for answers on how to handle things.
Right after Nathan was diagnosed I started thinking about all the things I wanted him to be alive for. Derek's baptism was one of them. On the 25th he was baptized with his cousins Asher and Ethan. These boys are so fun together. It's awesome to see them grow up!
