Hope & strength

As I type this, Mark and Ali are in Houston completing radiation treatment 27 of 30.  Today would have been his last day of treatment but when he had to go to the hospital in March, they delayed his treatments for 3 days, pushing his finish date to this Friday.  To say that we are proud of him would be the understatement of a lifetime.  Proud is what we are when he scores a run in baseball, this is something entirely different.  

I am not sure that I can put into words the feeling.  Since the beginning of the year he has missed birthday parties and sleepovers, he has missed school, his friends and riding his bike up to Whataburger with his brother.  His taste buds have changed and his beloved root beer is no longer appealing to him.  He has lost weight and gained weight.  He has had nights where he cannot sleep and days where he cannot wake up.  He has lost his hair.  We went to the beach a couple of times but he couldn't play like he wanted to.  He went from never having been to the emergency room to having multiple surgeries and spending days and days in the hospital.  He has a shunt in his head directing spinal fluid from his brain to his stomach.  Some days it is hard for him to walk or even stand up straight.  He gets tired a lot easier than he would like.  Sometimes he uses a wheelchair to get around.  His vision has changed and he cannot read books.  His Fortnite video game isn't as fun for him as it once was.  In three months he has gone from living the normal life of a 10 year old boy to a 10 year old boy who is fighting for his life.  

Through all of this, we have never heard him complain.  Not once.  The words "not fair" have never come out of his mouth.  He has been poked, prodded, zapped with radiation and operated on so many times that needles and doctors don't even phase him.  He is not embarrassed about using the wheelchair.  He is doing what he has to do to try and get better.  He is a vision of strength and courage.  All of our lives have changed immeasurably in 3 short months, none more so than his, yet he meets each day and each challenge with a resolve to get through it and get better.  Proud is greatly underselling it.  He is my hero.  

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As his radiation treatments come to end, the next part of this journey begins and we really don't know what that means yet.  There is a 4 week period after radiation where he will rest and allow his body to recover from the radiation treatments.  He will have an MRI at the end of that time period to see if the radiation has stopped the tumor from growing and shrunk the size of it.  After that we will know what clinical trials he is eligible for.  We will make a decision on what trial or immunotherapy gives us the best hope and then we will start on that part of the journey.  I have no doubt that Mark will meet that challenge as he has met all of the others up until this point.  With strength and resilience and courage.  A quiet fighter indeed. 

After Mark's trip to the hospital in mid-March he has been on a steady dose of steroids to help with the inflammation that the radiation is causing in his brain.  The inflammation is what is causing his exhaustion, the balance and walking issues as well as the problems reading.  He was on intravenous steroids in the hospital and when he was released he was given pills to take orally.  They have been effective but come with their own side-effects.  The doctors wanted us to wean him off the steroids gradually but as soon as the dosage was lowered he was right back to being too exhausted to function.  They allowed us to increase the dosage, which has helped.  We are going to keep him on the elevated dosage until Friday when the treatments end and then gradually reduce them.

After Mark's last treatment on Friday, he gets to bang the gong to signal the end of his treatments.  An absolutely huge accomplishment considering everything that he has been through over the last month and a half.  For 6 long weeks Ali and Mark have gotten up, loaded up in the car, braved Houston morning rush hour traffic to make it to MD Anderson in the Med Center for treatments, done the treatment, turned around and made the 1 hour and 45 minute drive back home.  Some days there are several other doctors appointments to go to.  It has been grueling but not once have either of them complained about it.  About three weeks into the treatments, they had to move him to a different treatment center within the Med Center.  Of course we had the hiatus in March when his little body had enough and he had to spend three days in the hospital recovering and getting the steroids.  Banging the gong does not mean he is cured of cancer.  Rather, we are celebrating an end to this part of the journey and all that he has been through to make it to this point.  Bang the hell out of that gong, Mark.  You earned it.

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From the onset of radiation the doctors had told us that Mark would probably lose his hair wherever they were directing the radiation beam.  Since the tumor is in Mark's brain, it was highly likely that he was going to lose a good bit of the hair on his head.  For the first few weeks, there was not any noticeable hair loss but when he was in the hospital in March it started to fall out in patches around the side of his head and the patchiness was around the back of his head as well.  We asked if he wanted to get a haircut for them to leave the top longer and shave the sides and back so that it was uniform but he didn't want to do that.  After a couple of weeks we took him to get a haircut anyways.  They did a great job blending it and he looks like he could be in the Corps with his Yell Leader friends tomorrow if they need him to fill in.  

This past weekend was Easter and in what has become one of our favorite annual traditions on Good Friday, we went to Kemah- just north of Galveston,  for lunch on the water and rides on the Boardwalk.  We got to ride the train and the one ride Mark said he was up for Pharoh's Fury, the pirate ship looking ride that they have at every amusement park and fair that swings back and forth.  After lunch we went back to Ali's mom's house for the kid's Easter Egg hunt.  It was a great day.  


Saturday we rested and Sunday we went to church.  Mark's best friend and his family sat by us in church and although Mark didn't have a lot to say, I know he was beyond happy to be in the company of his friend.  The Easter service itself was beyond words for me.  I will not do it justice and won't even try.  The sermon was about Hope.  I felt that sermon, that message, was written for us and spoken directly to us.  I was an emotional wreck by the time the service was over.  It was powerful and moving and I left church that afternoon feeling a sense of relief.
  
We cannot thank you all enough, Mark's Army, for everything that you all have done and continue to do for our family.  This lifetime is not enough for us for us to repay all of the kindness that has been given and shown to us since the start of this.  When I say that we could not do this without all of your support, I mean that from the bottom of my heart.  In whatever way you have contributed of your time or money or prayer or thoughts or food or books or toys or service or Facebook comments or anything else, please know that it has helped more than you will probably ever know.   I wish that I could thank each of you individually and personally for what you have done for us.  Please just know that your kindness, generosity, love and support has changed our lives forever.  
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Please continue to hold us up in prayer.  Please give prayers of thanks for Mark being strong enough to finish his radiation treatments.  Please pray for yourselves, Mark's Army of supporters.  Please pray for Mark's doctor's that they continue to find ways to treat Mark and all of the other children affected by childhood cancer.  Most of all, please pray for Hope.