A lot can happen in 6 weeks

Let me start by saying that I am sorry it has been a month and a half since I have posted an update to this site.  When I last posted, Mark was a couple of days away from banging the gong to celebrate the end of his radiation treatments.  It was my intention to take a few weeks away and just enjoy his recovery and our time with him.  Writing these blog posts, while therapeutic, is extremely emotional and I just wanted to enjoy our time with him before posting again. That is me being selfish.  We have posted smaller updates and pictures on Instagram and Facebook over the last several weeks but many of you that come to this site for updates are not connected with us on either FB or IG.  
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On Friday, April 5th we watched Mark complete his last radiation treatment and bang the gong.  Mark has had a little blue elephant lovey named Max since the day he was born.  Max goes everywhere with Mark and he sat right on Mark's chest during all 30 radiation treatments.  They endured that hell together and fittingly, Mark and Max both banged the gong.  We returned home that afternoon and had a celebration for Mark and his 4th grade friends at our house.  There was a sno-cone truck, a bounce house, balloons, pizza and a lot of smiles and laughter.  We are grateful for everyone that came that day to celebrate the end of Mark's treatments.  
The next couple of weeks brought some pretty incredible things for Mark and for our family.  Mark's teacher and her husband arranged for Mark to be honored during the flyover before the Aggie baseball game against Air Force.  A lot of people worked really hard, some strings were pulled and favors called in but Mark and I actually got to fly on one of the C-130's during the flyover.  It was an incredible experience for us both and a real honor to be in the presence of all of those heroes.  Thank you to everyone that made this happen.  That was something that neither of us will ever forget.  I am so thankful that I got to experience that with Mark.  
Ali's real estate brokerage put together a burger lunch benefit for Mark in mid-April.  We thought it would be a nice way for some co-workers, friends and family to come together and maybe raise a couple thousand dollars.  We grossly underestimated the outpouring of love and support that this community has for a family in a time of need.  In the course of a couple of weeks they put together a major fundraiser.  People donated money, food, items for a silent auction and a ton of time.  They worked relentlessly to pull this off and we could not be more humbled.  When all was said and done, they raised almost $100K!!  For everyone that donated and participated please know that your contribution means that we have the means to fight this awful disease with no limitations.  There is not a course of treatment anywhere in the world that is off the table.  A special thank you to Julianne, Morgan and Abbie for organizing this event.  I have said it before and I'm sure I'll say it again but there is no way that we can thank everyone that has come forward to help us in the fight of our lives.  Please know we are forever grateful and humbled by your contributions.  
A few days later, Mark was honored at the Aggie baseball game and presented with the Bravery Award by the Turn it Gold Foundation, a non-profit dedicated to the fight against pediatric cancer.  We were honored to stand alongside Mark as he accepted this award for himself and on behalf of every other child fighting their battle against cancer.  The crowd gave him a standing ovation and as we walked off the field the student section starting chanting, "Mark! Mark! Mark! Mark!"  in true Rudy fashion.  I had held it together up until this point but that proved to be too much.  
A couple of weeks ago, the four of us took a trip to Estes Park, Colorado.  This was a short trip and was just a way for us to get away and be reminded of what God is capable of in one of the most beautiful places on earth.  The cabin we stayed in was right along a river nestled into a quaint town in the middle of the Rocky Mountains.  The cabin was small but perfect for a long weekend.  There was a hot tub and running water but nevertheless, this is as close as you will ever see the Massey's get to camping.  We took family pictures and spent some time in town.  We stumbled upon the hotel where Dumb and Dumber was filmed and we even managed to catch some rainbow trout.  Unfortunately, Mark was extremely tired the whole trip and spent a lot of time sleeping.
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On May 7th Mark had his post-radiation MRI to see how effective the radiation treatments were at shrinking the tumor.  This was the day that we had been waiting for since the end of radiation.  There is extreme anxiety that comes with these scans.  Has the tumor shrunk, was the radiation even effective, has the tumor grown?  These are all of the thoughts that go through your head when you await the results of the scan.  This was the day that we were waiting for to decide what the next step was to be in Mark's treatment.  The results of the MRI would direct our decisions regarding clinical trials and plans for the next steps in Mark's treatment.  
Ali and Mark went to Houston as they have become so adept at doing and had the MRI done early on the morning of the 7th.  He was to have a follow-up appointment with his Neuro-oncologist later in the day to discuss the results.  They found a nice quiet spot in the hospital to rest while they awaited the second appointment.  Before they could make it, the doctor's office called and told Ali that they had looked at the MRI and she needed to get Mark to the ER ASAP.  That was all they said and as you can imagine, panic set in.  Luckily, they just had to take the elevator down to the first floor where the ER was located.
They saw that Mark's ventricles in his brain were extremely swollen.  They were concerned that the shunt had failed.  Over the course of the previous few weeks we had been weening him off his steroids and he had become increasingly tired and more lethargic.  We were told that this was normal for someone post radiation especially coming off the dosage of steroids he had been on.  There was never cause for concern, until now.  They tapped the shunt to see if the pressure was high (meaning failure), it wasn't.  They took him for X-rays to see if there was blockage somewhere between his head and his abdomen, there wasn't.  They looked at MRI images to see if there was tumor progression (worst case scenario), there wasn't.  They were perplexed as to what was causing his eyes to be permanently closed and his extreme lethargy.  They upped his steroids and admitted him to the ICU for observation.  
After a couple of days and several specialists overseeing him they determined that the tumor had shrunk and as it shrunk it was leaning against a part of his brain that is affecting his lack of energy and the ability to open his eyelids.  He has a condition called third nerve palsy which is directly affecting his ability to open his eyes.  For three weeks he has had his eyes closed and he can only see by using his fingers to open his eye lid.  We were told that the increased steroid dosage would remedy this in a couple of weeks. After two nights in ICU they let him go home for us to monitor him.
He has not progressed past this. This past week we had several appointments with all of his doctors and we could not get a clear answer as to what was causing this.  The steroids had not helped at all.  Some doctors were saying it was inflammation from the radiation, one doctor said it could still be the shunt malfunctioning, they think it may be necrosis a byproduct of the radiation.  The neurologist that did Mark's first surgery in January (the one that sat with him in recovery until we arrived) is a world renowned expert in pediatric brain shunts.  He determined that the shunt was working as it should.  Since that was ruled out it meant that it was most likely inflammation and necrosis.  There is a drug that they can give intravenously to combat the effects of this and they ordered this last night.  Mark got the infusion around 7pm and him and Ali got home around 10pm.  
This morning Mark woke up and could open his right eye ever so slightly without using his fingers.  He was able to feed himself breakfast and actually walked on his own from his room to the kitchen.  This was the first time in weeks he has been able to do any of this.  We are cautiously optimistic that this will help restore his quality of life.  We are trying everything we can to get Mark healthy enough to participate in clinical trials specifically for the type of cancer he has.  Our focus right now is getting his vision back and getting him stronger.  
I grossly underestimated the toll that the radiation would take on him. I feel so stupid for thinking that it was just a necessary inconvenience in the course of his treatment.  I naively thought that he may lose some hair and need a little nap every day but he would just power through and be ready to go.  That is how it started but certainly not how it finished.  The radiation was an absolutely necessary evil.  The 30 treatments were hell.  We are thankful that they worked to shrink the tumor but the side effects have been devastating.  We hope and pray that the drug infusion works and that he improves just as quickly as he declined.  
Our tough, little soldier has still not complained.  He has not said that it isn't fair or asked why him.  As much as I may hope and try, I will never be as good as him.  I have said all of those things countless times to myself and out loud.  We continue to put one foot in front of the other and approach each day to face the challenge of that day.  That is all we can do right now.  We can pray, we can hope and we can fight right along side of him. 
The last six weeks have been marked with high highs and low lows.  Through it all we continued to be in awe of his courage, bravery, fortitude, toughness and faith.  We know that he knows, without doubt, how much love and support he has as he continues this fight.  Please keep Mark in your prayers.  Please continue to pray for his doctors and medical team.  Please pray for us to continue to be strong for Mark and Jameson.  Please pray that this medicine works to restore his vision and energy.  Please say a prayer for all of the children that have to carry the burden of this terrible disease.