Saturday, October 20, 2012

[Saturday, October 20, 2012] Day 129_Day +23

I've been a slacker blogger.
I know.
Blake tells me that often enough.  ;)
Today's day 129 of Kenton's AML journey.
Day +23 since transplant.
He's showing classic signs of engraftment syndrome.
Apparently these are all good signs at this stage of the BMT process.
Who knew, right?!
We've been extra grateful the past couple of nights for super quiet nurses.
Super Stealth Ninja Nurse.
And Little Mouse.
That's what Kenton calls the two nurses from last night and the night before.
I have to agree.
Honestly didn't have to push the call button a single time.
They caught every beep of the machines.
Timed everything out so that we heard nothing.
Such a blessing after the struggles Kenton had each night.
He gets to bed on time, but then wakes up shivering uncontrollably with fever.
Or last night it was the weirdest shivering that produced vomiting.
And then fever.
With fever, blood cultures have to be drawn.
And Kenton has to have Tylenol.
The fever has to come down before he stops shivering enough to fall asleep.
By that point it's near midnight.
Yes, so grateful for Super Stealth Ninja Nurse and Little Mouse.
Today Kenton is writing a book.
Waiting on platelets.
And anxious to see Luke and McKayslin.
Our afternoon will be spent playing games and watching movies.
Then McKayslin and one of the grown-ups will head to our home away from home for the night while Kenton and the other grown-up sleep here.
Tomorrow will be more of the same.
The home away from home story is one that needs to be blogged soon.
It's a classic reminder to listen to promptings of the spirit and act on those promptings.
Such a blessing to our family as we come to the last 77 days of this journey through diagnosis, transplant, and back into normal living.
So many are still asking what you can do to help our family.
I hesitate to say that we're fine, because fine is relative, and we may or may not be fine within 12 seconds of that being said.
Some days are still freakishly hard.
Unbearably sad.
Incredibly frustrating.
And downright depressing.
Instead of we're fine how about we're making it.
One day at a time, we're making it.
This morning when I was waiting for Kenton to wake up, I was reading October conference talks.  There were so many from Saturday afternoon that really resonated with me.
Luke and I missed the Saturday afternoon session (and both Sunday sessions) trying to sort out the home away from home situation.
The one that I want to share today is:
Be Anxiously Engaged by Elder M. Russell Ballard
We read of the service Church members provide around the world and especially the humanitarian service given in times of crisis—fires and floods and hurricanes and tornadoes. These much-needed and much-appreciated emergency responses should certainly continue as a way of bearing one another’s burdens. But what about our everyday lives? What would be the cumulative effect of millions of small, compassionate acts performed daily by us because of our heartfelt Christian love for others? Over time this would have a transformative effect upon all of our Heavenly Father’s children through the extension of His love to them through us. Our troubled world needs this love of Christ today more than ever, and it will need it even more in the years ahead.
These simple, daily acts of service may not seem like much in and of themselves, but when considered collectively they become just like the one-twelfth teaspoon of honey contributed by a single bee to the hive. There is power in our love for God and for His children, and when that love is tangibly manifest in millions of acts of Christian kindness, it will sweeten and nourish the world with the life-sustaining nectar of faith, hope, and charity.
How do we make this change? How do we ingrain this love of Christ into our hearts? There is one simple daily practice that can make a difference for every member of the Church, including you boys and girls, you young men and you young women, you single adults, and you fathers and mothers.
That simple practice is: In your morning prayer each new day, ask Heavenly Father to guide you to recognize an opportunity to serve one of His precious children. Then go throughout the day with your heart full of faith and love, looking for someone to help. Stay focused, just like the honeybees focus on the flowers from which to gather nectar and pollen. If you do this, your spiritual sensitivities will be enlarged and you will discover opportunities to serve that you never before realized were possible.
President Thomas S. Monson has taught that in many instances Heavenly Father answers another person’s prayers through us—through you and me—through our kind words and deeds, through our simple acts of service and love.
And President Spencer W. Kimball said: “God does notice us, and he watches over us. But it is usually through another person that he meets our needs. Therefore, it is vital that we serve each other.”
Lately we've been blessed by many acts of service, simply offered with humble hearts.
Meals have shown up on days that I wasn't sure I could handle doing one more thing.
Gas cards have been sent in thinking of you cards. . .some signed, others blank.
Treats have been brought to school and silently handed over with a hug and a look that speaks volumes of the concern and care of the giver.
Cards, treats, books, gifts, etc. have been delivered to Kenton and Luke at the hospital.
Often by strangers that are following our story through Facebook or this blog.
Other times by dear family members and friends.
How do people know what we need at the exact moment?
They prayed to find a way to serve.
And when that prompting was given, regardless of the convenience factor, they acted on that prompting.
Blessing our lives.
Meeting our needs.
Our goal has been to look for ways to serve even in the midst of our own heartache and trial.  We pray daily for opportunities to serve.
Our gratitude in being able to serve allows us to accept service offered to us in a much more humble and willing frame of mind.
Thank you for your continued service, love, faith, and prayers.
77 days until life returns to the new normal.
That is our biggest prayer.
Day 129.  Day +23.

Sunday, October 14, 2012

[Too long]

Day +17.  Day 123.
It's been over a month since I posted.
Life's been a little busy.
About 42 kinds of crazy.
A whole lot unpredictable.
And has had lots of moments to celebrate, many moments spent in prayer, and a few moments of all out frustration/anger/sadness.
Today marks 17 days since Kenton received his BMT (bone marrow transplant).
123 days we've been on this crazy journey.
He's felt remarkably well during the past 17 days other than the typical tiredness associated with low blood counts.
There were a few days when Kenton was dealing with mucositis (sp?).
(The sores in his mouth/throat/digestive tract).
The doctors told us that once the sores developed, they would stay until counts recovered.
Through no small miracle (thank you for adding your faith and prayers to ours!), Kenton's sores are completely healed and he is able to eat.
TPN (total packaged nutrition) was given for less than one week.
Again, we were told that once BMT kids start on the TPN, they stay on it until counts recover.  Yet another miracle we are so grateful to receive.
There have been a few days when Kenton's mucositis has caused vomiting and even one episode of gagging/choking, but those have been incredibly minimal.
Last night when I put Kenton to bed, I thought he felt a little warm.
He was shivering.  I was worried.
At midnight vitals, his temp was 39.4 (101.1).
They gave Tylenol and drew blood for cultures.
Then around 1 his oxygen levels dropped into the 80s, so they gave oxygen.
His fever was down to 38.4 (99ish).
By 2, his fever was gone, and with oxygen, his sats were in the high 90s.
He was resting comfortably, we had a highly capable and QUIET (thank heavens for that!) nurse, and I went to sleep.
The next thing I remember is waking up a little before 7 to see Dr. Pulsipher examining Kenton (who was still sleeping soundly).
Dr. Pulsipher explained that the fever (and most likely soon and accompanying rash) are actually signs of what they call engraftment syndrome, which means that Kenton's body is preparing to engraft.
They'll use Tylenol as needed to control the fevers and give additional antibiotics and/or antifungals if necessary.
However, what I heard was fevers are good right now.
And, thinking back to rounds 1 and 2, Kenton always fevered before his counts started to recover.
When Kenton woke up, he ordered breakfast (yogurt and granola), ate, took his meds, and went back to sleep.
All of his counts are down today.
Platelets are being given.
Blood is ready to transfuse after platelets.
He's frustrated.
I think he thought his numbers would magically jump because of what Dr. Pulsipher said.
I kind of hoped to see a little increase.
We did yesterday with Hct and Hgb.
But everything is down today.
Thank you for your continued prayers and faith.
So many more stories to share.