The song Away in a manger , specifically the one by Jeremy camp , has been my prayer throughout this advent season.
His voice alone is extremely powerful but the words are what have been my comfort these past two months.
Be Near me Lord.
Be near me Lord.
He comes close to screaming them. I have been practicing alone in my car too. 😬
Be near me lord.
And then he quiets down , as if a calm wave slowly comes back over him and he speaks them again.
Be near me Lord.
I think it has come down to these four words for me after these long worrisome two and a half years.
I just pray that God will show me , show mike , and show our kids that he is near us.
The lyrics of the hym as you probably already know say this ,
I love the Lord Jesus
Look down from the sky
And stay by my side
'Til morning is nigh
Be near me, Lord Jesus
I ask Thee to stay
Close by me forever
And love me, I pray
I feel in these dark , scary, answerless , and fearful days and nights this is my ultimate prayer. Stay by me til morning. A simple prayer, with tremendous depth and meaning for me now that I know a deep suffering.
Stay near me and love me.
Whether you believe in Jesus or not , the light and hope that a baby and new life brings is universal. It is in all of us to want to be loved and feel loved, we are born with this love.
And I think this song , this particular version has made those words hit home for me.
All I could ask for is that we are loved and know gods love is caring for us in these heart wrenching times. It allows me to feel the peace that surpasses all understanding.
Be near me lord.
There have been many changes to Mikes treatment plan over the last two months and I am sure I will get something wrong if I try to go into too much detail. So in short we are trusting Dr Kota’s ultimate plan. Knowing that God is guiding him as well.
He has stopped his current Chemos and starting a VERY new chemo pill hot off the hemotology conference and FDA approval. We were told not to have an appt right after this conference...as all doctors are excited to try the latest drugs on guinea pigs 😳😉 The good news about this drug is it is pill form.
Mike has also been put him back on Jakafi a drug he was on after transplant for his GVHD.
Two of the medications ( ibrutinib and asparaginase ) which he has been on for over a year were causing side effects that became to much to bare for his broken body. One of the chemos is not meant to be used for long term maintenance so at a year in , it seemed more than his body could handle.
He will also start 12 days of radiation on January 2. They are going to radiate the spot they have been watching since June. It appeared to have been maybe a little bit brighter on the most recent pet scan he had the week after thanksgiving.
As he starts this new chemo pill my fears for the side effects and unknown tried to get the best of me. But I thought of all his body has been through , like the fact he has a strangers immune system and I’m reminded of the miracles that can happen. And so I put my faith forward in that ,instead of my doubt. Maybe this will be the miracle that finally works . I sure hope and pray with all I have.
This is the very short version. There are side effects Kota is managing through our fearful text we continue to send daily. He puts in many extra hours for us that would could not be more grateful for. We will forever be thankful for the rare doctor put in Mikes life who humbly tells us he is”just doing his job”. But we know better.
It’s a lot to stomach as I wish this nightmare would end and this disease would just leave him
alone. Because not only is the disease our worry , the cure ( his GVHD) is also our worry. And causing him many days of pain and sleepless nights of suffering as it tries to take over his skin.
Yet that’s the thing about life. It’s not meant to be lived without suffering and so we must search for meaning and for ways to continue to find joy amongst our sadness in days.
I promise we are trying. We know that so many are suffering WAY more than us that we witness and hear about daily. And our hearts are with you all in whatever you are going through.
Away in the manger came on the radio as I pulled into our favorite Dunkin donuts a few weeks ago. I watched Julie the long time owner , bring a piece of bacon to the dog in a car of one of her customers .
If you have been to this Dunkin’ Donuts, then you know Julie. She knows our kids order and asks me about Mike every time I walk in. She knows every single one of her loyal customers order as soon as their car pulls up in the small corner parking lot. My dad at the top of the list of daily comers.
Her husband passed away last month from complications after having a stroke earlier in the year.
As I watch her continue to love the people that come in each day , through her suffering and pain, I am inspired by her ability to love her way through the heartache. To continue to find joy amongst her own suffering by serving others.
I think this is the key to life’s pains.
Love heals. You must keeping living through the pain you must keep going even when it hurts so bad you think you might be sick. You must keep searching for the joy, finding someone to help or love while you are hurting, seems to bring the most joy to me these days.
This is where I witness and know without a doubt God is with us. I felt it watching Julie that morning and in many moments throughout my days. He is near.
Please continue to be near me lord.
He sent his son at Christmas , amongst these dark winter days , as a reminder he is with us. Some of my nights feel just that black. But god is suffering right along with us. Sitting in the dark near me.
So we keeping searching for joy in the little things each day.
I did some major SELFISH searching while waiting for Mike to finish his last pet scan a month ago. Searching for a new puppy as it’s the LAST thing we need. We have officially lost our dang minds 😜and probably paid too much for our very own new “Pearl”.
But also not sure we asked for a super rare cancer diagnosis either 🤷🏽♀️.
So mike sealed the deal and we welcomed “pearl “ ( aka turtle called by graham) to our family last Sunday.
I did some research on pearls and found they are made from the mollusks trying to protect themselves from a foreign substance that comes in and tries to harm them.
I found it interesting that I think Mikes heart and soul is trying to do the same thing from the foreign , ugly and unwanted disease that has some how taken home in his body.
It is a RARE gift of love we have been given though this awfully rare diagnosis. A love I never imagined.
And so I choose to find hope in the rare love and rare pearl it opened us to. You have to to allow suffering to crack you open. We must try to stay open like the oyster and share this pearl we have been gifted instead of living in the despair and ugliness of the shell of cancer. And it is SO ugly.
We must try and be grateful for being open to the gift of love through cancer. It continues to be a choice I must make all day in order to keep my head above the surface .
Yet we can’t do it alone. Our people and community keep us off the deep ocean floor of despair and we are grateful. We know you are also the pearls that bring light and hope on our journey.
We pray you feel God near you the same way we feel him near us.
There is no greater gift. Except maybe a new puppy 😉.
“When you care for others , you manifest an inner strength despite any difficulties you face . Your own problems will seem less significant and bothersome to you .reaching beyond your own problems and taking care of others, you gain confidence , courage, and a greater sense of calm .”
Thank you for your continued prayers , we continue to need them everyday. Sending so much love and hope in your days ahead,