Fight Like Mike

March 2, 2020

Day 1211

 

Psalm 19. 

Let me keep surrendering myself until I am utterly transparent. 

 

 

Dear Fight Like Mike army,

 

Some of you have been following along since the beginning of this fight and know the story and meaning behind my Dad’s card we carry with us each day. 

As the fight  continues , I keep thinking of the very first appointment Mike had at the doctors office at Gwinnett medical center on a Friday afternoon. When we heard that he might be sicker than we imagined.I won’t rehash the entire story where the journey began. But when Mike emptied his pockets to step on the scale,his card fell on the floor. 

   

 

 

 

I believe that he has guided our days from the very first one. 

But I believe we have to keep moving forward and doing all we can each day. 

It is our job to keep trusting. 

To keep living through suffering. 

To keep persevering through really hard times. 

Knowing that sometimes that looks like admitting when we are weak and vulnerable. 

 (I have been doing a lot of that lately ) 

 

I tell the kids each morning , be brave , be kind , and be you. Most importantly- have fun. And this year  we added and Fight like Mike( Daddy). 

  It’s becoming a way of life for me. Another way of saying - do all you know to do. And God will take care of the rest. 

  

I feel like Jake , Celia, and Graham are slowly grasping the meaning behind it . And it makes me so proud of them and proud of their super hero daddy. They are braver than they realize. 

 

 Fight like mike. ( do all you know to do ) and God will do the rest. 

 

I wanted to send a quick update on Mike and what the plan is for the next couple weeks. Remembering that anything can change. 

 

 We had an appointment with Dr Arellano here this past Wednesday at Winship. 

Mike started his second round of Inotuzamab the same day. It is an infusion that last 1 hour. He also had an infusion of IVIG which is given to hopefully help his immune system.

  This round of chemo will also be one dose a week for three weeks. So he only has two left , the following two Wednesday’s. 

 

We saw doctor Kota Thursday in Augusta and talked further about what  hopes for the next month might look like. 

 

The problem ( one of a million)is that the current chemo he is on is a strong chemo. It is not something Mike can be on long term. It is not a cure for him. 

 

Dr Kota does feel this chemo is probably working right now. We are assuming this because the concerning symptoms Mike was having that originally brought us to Augusta was blood in his urine. It has stopped since starting on this drug , so we are hopeful it is helping the new disease on his kidney. 

 

However , we need a long term plan for his disease because it continues to be aggressive and keeps

coming back. Throwing curve ball after freakin curve ball. 

 

Our next best plan is a trip to MD Anderson , where they offer trials for a new Car T cell therapy. You may have heard of  Car T cell transplants that are being done to treat Leukemia.  I’m not going to try and explain them. You can google it:)

Basically they take your cells or donor cells and train them outside your body to fight the leukemia cells and then put them

back  in your body to fight the disease. 

 

MD Anderson offers the trial that is the best match for Mike’s specific type of leukemia. If things could go our way , we hope and pray for a trip by the end of March. 

 

Yet there are many factors that have to add up for this to take place and for him to qualify for the trial. 

 

The main problem being his lung. His right lung is still causing really poor lung function. And overall making him feel exhausted and weak all the time. 

 

We are trying to live one day at a time and not look this far ahead but it is difficult. I’m sharing this because we could use your prayers for healing especially for his lungs. 

I’ve been thinking about all the months leading up to his transplant and how I doubted God’s plan and how I was continually discouraged he wouldn’t make it to transplant. 

 

But he did. 

 

Here we are again. With so many things pulling against him. And we are left to trust.  

 

I’m believing that miracles can happen and he can gain strength to be accepted on the trial. 

 

But more importantly

I'm believing that Everything is a miracle. 

That each breath.

Each moment. 

And each day. 

Is a miracle in itself. 

 

And that no matter what Gods plan is , it is all a miracle , and that we will be ok no matter the story he writes. 

 

That this is in his hands. 

 

That we must have courage enough to believe he knows what is best for us. 

 

Mike will also most likely start a dose of steroids next week which we hope will help his lung. But if nothing else , I pray they will give him temporary relief from all the day to day suffering.He has an appointment with his pulmonologist this week too. 

 

He is brave and is fighting with all he has but he is suffering more than one deserves. 

 

I hope this gives you a better understanding of where we are. It’s hard to write about our reality and share it because it is so scary and so painful to live each day. And the fear is very real. But facing our fears and sharing our story has always helped lessen the pain , so I’m choosing to open up once again .

 

We are living where we don’t understand Gods plan , but are forced to trust it. 

 

The same way our kids don’t understand why they can’t have an iPhone at 4, 6, and 9 🤔🤔😜The same way they argue with me , I argue with God. For things I want desperately but can not have. 

 

We will all understanding one day. 

When we are capable and have the ability to comprehend.

 

Until then we walk with blind faith , that someone else knows better for us. 

 

If I could offer you a piece of advice , take some deep breaths this week. And be grateful for just that. Until that simple gift has been taken away , we have no idea the power of it. Do it for Mike. And know that you are loved by God because you are simply capable of breathing. You are enough.  

 

 

Keep swimming y’all. 

 

 

 

You Belong to God

You are not what you do, although you do a lot. You are not what you have collected in terms of friendships and connections, although you might have many. You are not the popularity that you have received. You are not the success of your work. You are not what people say about you, whether they speak well or whether they speak poorly about you. All these things that keep you quite busy, quite occupied, and often quite preoccupied are not telling the truth about who you are. I am here to remind you in the name of God that you are the Beloved Daughters and Sons of God, and that God says to you, “I have called you from all eternity and you are engraved from all eternity in the palms of my hands. You are mine. You belong to me, and I love you with an everlasting love.

Henri Nouwen

 

 

 

Romans 5:3-5

3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

 

 

 

 

 

 

 

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