emergency surgery & a powerful gathering

We are beyond blessed to have so many people around the state, the country and the world praying for our sweet Mark.  On the very first blog post I begged that we stand behind Mark and give him the same love that he has put out into this world. You have done so and continue to do so in so many amazing ways.  Thank you. 

I am writing this tonight from Mark's room at Texas Children's Hospital.  We're back.  Mark had emergency surgery this evening to put a shunt (a drain) in to his brain to drain the spinal fluid that had been building up over the last couple of weeks. It has been a month to the day since his first surgery and the doctors forewarned us that the hole they created initially may close up.  It did.  A shunt is a permanent fix that will allow his spinal fluid to drain.
​

Watching the Super Bowl with friends right before symptoms started to set in.

How did we get here?  On Sunday night we were watching the Super Bowl and Mark just wasn't acting himself, he said he wanted to go home and he was really tired.  He slept from about 8pm Sunday evening until around 4pm Monday afternoon.  He got up a couple of times to get water and something to eat but it was a struggle to stay awake.  We were concerned but not overly alarmed since a symptom of the tumor is tiredness and lethargy.  However, this did seem extreme.  Around 6pm Monday he complained of a headache, the same type that he was getting before the surgery.  This is when the fear set in.  His team at Texas Children's recommended we take him to a local ER to have him evaluated immediately.  
​

Struggling to stay awake and make sense at our local ER.

​They ran blood tests, COVID tests, checked fluids and vitals and even did a CT scan.  Everything checked out and it was up to us to decide to either take him home and have him rest or to take him down to Houston and get him admitted to Texas Children's.  We decided that it was best for Mark to rest at home and hopefully he would wake up on Tuesday feeling better.  That didn't happen.  
​

In pre-op getting ready to have shunt placed in Mark's head.

Tuesday morning Ali tried to wake him and he couldn't keep his eyes open for more than a few seconds at a time.  She made the split decision to load him up and get him to Houston as soon as possible.  They got down here and after another CT scan they saw that the fluid was quickly building up and they needed to perform surgery as soon as possible to implant the shunt.  I got here as fast as I could but he had already gone back for surgery.  The doctor came out and told us Mark had done great.  He answered some questions that we had and told us we were allowed to go back and see Mark.  This was the same recovery room he was in a month ago.  It struck me how different this time felt.  This time it felt normal, which is scary.  After the first surgery I was scared to see him and was overcome with emotion seeing our baby with wires and tubes all over, half-awake, half-asleep.  We had done this all so recently that it was almost like we had never left.  
​

Post-op recovery room. Surgery was a success.

He did much better after this surgery.  We got him up to his room and he kept telling us how hungry he was.  We agreed and ordered some Chuy's.  Thank you Door Dash.  He ate good. He looked good.  The color had returned to his face and although he was still coming off the anesthesia it was the most aware and awake he had been in a few days.  He is sleeping peacefully as I type this and I am excited to see how much progress he makes on Wednesday.
​
A special thank you to Dr. C at the ER in College Station. Ali had to leave the hospital to make sure Jameson was taken care of last night, which left me alone with Mark.  This kind doctor had heard Mark's story through mutual friends and had actually been praying for Mark before actually meeting him at the hospital.  He prayed over Mark and gave this emotional dad a hug when I needed one the most.  Thank you again for your compassion and prayers Dr. C.  

A visit from Mark's new friend, Crosby.

After the last post there has been a lot that has gone on.  Mark was scheduled to start radiation this coming Thursday and he has had several appointments to prepare for that.  This will be delayed a few days with the surgery he had today but will start very soon.


After sharing Mark's prognosis, our friends organized a prayer gathering at their house.  This was the most powerful, emotional, spiritual event I had ever been a part of.  We all gathered and friends and family prayed over Mark and our family.  Mark's friends prayed for their friend to get better, our friends prayed for our strength and guidance to make the right decisions for Mark's medical care.  Those that couldn't be there prayed from wherever they were in the world at the same time as the gathering.  I could feel God's presence in that room and we were moved by everyone's love and common plea to heal our son.  Thank you to all who prayed that night and continue to pray with us and for us.  
 

Prayer gathering for Mark hosted by dear friends in our neighborhood.

After the prayer gathering we went home and we were talking with Mark to make sure that he knew how much everyone loves him and is pulling for him to get better.  Out of nowhere he bluntly asked, "so...does everyone who was there tonight know that I have cancer?"  Gut punch.  That was the first time we had heard him verbalize it.  It is surreal to hear your child say the words 'I have cancer.'  Those words will live with me forever.  I wish you didn't, Mark.  God, I wish you didn't.


We let him know that everyone knows so that they can pray for his strength and his healing.  He knows he is not alone in this fight; however, I don't think that he understands just how many people are following his journey and fervently praying for him to be healed.  Another one of our friends had bracelets made for #MarksArmy to let him know we are all standing with him in this fight.  Our intention is to get these out to everyone that wants one.  Please bear with us.
​

Mark's first pedicure with Nana!

With Mark's radiation scheduled to start on the 15th we wanted to take this past weekend and just get away.  Get out of town where there is not the temptation to run errands or meal plan or look at the bills or spend the afternoon going down the internet rabbit hole of cancer treatments.  Just get away from it all for a couple of days.  With very little planning or forethought (completely unlike us) we booked a little condo in Galveston for the weekend.  The weather wasn't supposed to be great but we didn't care.  We ate well, we fished not so well and the boys even swam in the ocean for a bit.  Most of all we just enjoyed being together.  

A weekend getaway to clear our minds.

Fishing in Galveston with no luck.

This trip was emotional and much needed to re-connect as a family.

Please pray for Mark to heal after this unexpected bump in the road.  Pray for his body to accept the radiation treatments as soon as possible.  Please continue to pray for his strength of body and spirit.  Please pray that he knows how much he is loved by all of us and by God and Jesus.  Please pray for Ali and I to have clarity in difficult medical decisions that are quickly approaching.  Please pray for Jameson's continued strength and selflessness.  Please pray for yourselves, Mark's Army.  Please pray that we all learn something from Mark's journey.  We were chosen to walk this path.  I don't know and may never understand why He chose Mark but my prayer is that it is not in vain.  
​