Life with a crazy weird leukemia continues. We keep trusting the journey. Some days harder than others. I realized as I sat to write you all that we are just three months shy of 2 years since Mikes transplant. A miracle. I give thanks for that gift everyday. Days feel long but boy does time seem to pass quickly.
In the cancer news and Mike , it has been a trying and busy month. Pet scans, ct scans , bone biopsies, spinal infusions and tests, brain MRIs , chemo , eye appointments , and two trips to Augusta. This is the long story short. Again days felt long - month seemed fast.
We are happy and excited to share that pretty much all the test have come back negative for Leukemia.
We report that with a disclaimer ( that’s the word Mike has been using) .
Leukemia is complicated. That’s the only thing we know is black and white or crystal clear. So very complicated.
When we went for his latest PET scan July 20th, they still saw the spot that they saw back in June. It hadn’t changed much, maybe a little smaller. Not gone but we took it as a big celebration.
Kota decided to be proactive and we went back for the bone biopsy of the spot two weeks later. We were warned they may not be able to find the spot because there is not a mass like the last spot last November. (Which is great news) However there is still that chance it is Leukemia bc like we have said before these test can only detect something like millions of cells - not trillions.
BUT - we are celebrating this is a win. Only sharing a disclaimer with you as well.
The brain MRI , spinal fluid , and biopsy all showed negative as well. So we give great thanks to God . And these incredible human beings taking care of Mike.
While in Augusta I got a picture of a few of these guys who give us so much hope and make us feel so cared for. And We are grateful to have Dr Arellano here . Mike could not be in better hands and we feel at ease knowing these brilliant minds are doing all they can for him.
Mike has good and bad days. He got a terrible cold from us that took him down even more. His eyes are still in bad shape and we learned that my be the new norm too. Oh how we love and hate GVHD. While it’s keeping him alive and the leukemia at bay it makes day to day life tough. His lungs are still a topic of discussion because ( or for me mostly 😬) as I am paranoid of the GVHD attacking them again. They are monitoring them closely. He was also given strict orders for no sun ...see pic below 🤣
He started another round of treatment this past Monday. And Most likely his next PET scan will be in September. We pray the spot will be gone! If not we live in the hope of more treatment options.
But we are tackling one day at a time!
Read further for what’s been on my heart.
Wes and I were recently talking one afternoon about this saying ....God doesn’t give you more than you can handle. We came to the conclusion it was a bunch of BS ! we feel we say it each other and ourselves to make ourselves feel better and feel like we are equipped for this life.
We were in the middle of another rough week( month). And in the midst of all of Mikes test , Bella (our dogs) discovery that her days are limited with us, I ended up with Celia at children’s for an ultra sound of her kidneys.
The child is too busy and full of life to stop and go to the bathroom, She’s got stuffed animals to teach and brothers to care for making sure they have water and snacks. Even though we had warned her of UTIs, five year olds aren’t too worried and probably had no idea what I was talking about. Clearly because she told everyone her”kittens” (kidneys ) looked good. Who we five year olds could be pregnant with kittens 🐱?
And so even though in the back of my mind I was pretty sure it was nothing serious ...I still felt a little anxious as we sat in the waiting room.
But not Celia. She told me she is only afraid of big scary bugs . She got her daddy’s courage. Thank God. Jake and I are the ones found sipping a coke the doctor has given us because we were in the verge of passing out.
Celia and I got to spend the day together ( alone time is rare ) and I realized even more why God put her sweet , mothering ( kinda bossy) soul in my life. She is already at 5 all the braveness I ever wanted to be. She takes care of us all - especially her brothers😬without their consent.
And she is happily , wherever she. She is most happy when she is helping someone else (even when it’s not welcome ha) I have told y’all before how she helps scratch Mikes back. The latest routine for Mike is to apply crazy amounts of steroid cream and aquafor to his poor GVHD stricken skin.
Celia has helped taken over my job of rubbing lotion on Mike’s back. She loves nothing more than to ask him if he wants to play the letter game. I’m sure you all have played before. But she draws a letter in the massive amounts of expensive ( insurance🙏🏼👏)lotion she has smeared all over his back. And he guesses the letter. It’s almost a daily ritual. Yesterday I listened and tried to chime in and say a sideways x is a t. They looked at me crazy and said no way. They told me to stay out of it because it’s only upper case letters. 😜.
So I stayed out of it. But I couldn’t help but think of the this quote from the movie Christopher Robin. We saw it last Saturday and the sweet movie has stuck in my heart.
Pooh says- doing nothing often leads to the greatest something.
Cancer. Cancer has forced us to many many days and afternoons of nothing. Many days and afternoons of mike feeling like crap , scans,waiting, biopsies, waiting , chemo, waiting and not feeling like doing anything and feeling like we are not enough.
And yet cancer has left me with these moments of love in the waiting. Of watching Celia , who loves her daddy more than anything, Sit for an hour , draw letters , be silly and laugh so hard. It seems like nothing. But turned into the greatest something. Love.
Cancer has forced me to slow down. To live for each day. To find something great out of these moments that sometimes feel like nothing. Painful. Painful nothings. Not the insta world we live in but true to natures timing. Nothing in nature is instant.
This is where God is for me. This is where I know he is out there. God is nothing but love. Love is not something that we as humans have created. Not even religion. It is a true gift. And we often take it for granted. The love Celia has for Mike is a gift from above . She is 5. It comes so natural. God is love. And we are meant to share it. That’s all.
So Hota , I call her by her first name because I wish we were friends. She has quotes she post each day.
And hers this morning inspired my blog today as I have been asking God for much direction each day lately. Cancer gives gifts but it also is really F’n painful. Mike came to the epiphany that there are only two things that make me say the F word ...cancer and ....graham ( no offense buddy I love you but will you please go to sleep 😴 ) .
But Mike is right about cancer making me say that. It gets the point across on how much it can hurt. I have been kinda at that point lately.
Like , hello God , you have given me too much!
But this morning Hoda Kotb post said this
God WILL , very likely give you more than you can handle.
He will NOT, however give you more than he can handle.
A new spin and perspective on the BS Wes and I were discussing.
And it seems to be true. When I go back to that TRUST. I feel this statement to be oh so true. As a human being , life is without a doubt these days , way more than I can handle.
But if I let him be in control. Then I can conquer the next step.
And like sweet Penny, I like the four letter word HOPE better.
There have been countless moments over the past month I have known God is with us. Some pictured below. Countless moments of hope .
And so as always my heart comes back to Hope.
I’m thankful for each of you , who’s love is just enough to make
Me stop cussing and bring me back to hope. And special thanks to Baba who loves me through my daily pity parties. ❤️ and our family who also carry’s this burden and yet continues to love us and care for us in countless ways.
We keep striving , we keep working to be someone. To be heard ,to be seen and too be the best. 🙋🏻♀️Something big to To make our being worth something.
I give thanks to cancer and sweet Celia for the reminder this week - that to simply love... is plenty enough for one day.
I wish you a Sunday of absolutely nothing.
We are gearing up for the 5k again.
We would love for you to join us this year. I’m attaching the link here:)
Finding purpose from pain , is the only way I know how to keep swimming.
Explore daily the will of God.
“Jesus preached the golden rule
Buddha taught it too
Gandhi said eye for an eye
Makes the whole world go blind
With a little understanding
We can break these chains
That we’ve been handed
I’ve got the medication
Love is the remedy
Pray to be stronger and wiser
Know you get what you give
Love one another
Amen (amen), amen”
Tom Are, JR sermon on Angels has been my inspiration lately. Worth your time to listen.
You can find it here
Time to trust the angels. Aug 5