Super Z update (Peter Pan)

Well as most of you have heard the chemo is working!  Jake and I are beyond blessed!!  The week of an MRI is never any fun.  However, they may become a little more fun if we keep getting news like this 😀   Here’s the story from that day.

We made our way over the familiar bridge at Devos hospital. It’s an enclosed bridge that connects the parking garage to the hospital.  Zayne has always loved seeing the cars pass below his feet.  I had this feeling of disbelief when thinking we used to have to come for IV chemo once a week a couple years ago.  The first year ran through my mind after finding out he had a tumor.  Diagnosis, put in the port, IV chemo, tumor starts to shrink, 9 months later the tumor starts to grow and a cyst had doubled in size, headaches were non-stop.  At that point my little boy still had curls and a bink in his mouth. He still flew to Neverland with his cousin Wendy (Kate) whenever they were together.  Today, as I looked down at him walking beside me, I see what a little man he has grown into.  No more curls, no more bink, his toddler grin has turned into a boyish grin. However, he is still Peter and she is still Wendy.  Sometimes I still see small flecks of pixie dust on his cheeks when he smiles and the same little light in his eyes that makes him who he is. We made it to the elevator and before I could tell Zayne which number to push, he pushed the number 10.  Apparently after 4 years of coming here he doesn’t need me to tell him what floor we are going to.  I smiled as I put my arm around his shoulder.  I again went back in time remembering the first port access.  Remembering how horrific it was.  I remember when the tears had stopped I stepped out of the room leaving Z with Jake.  I went out to the lobby and stepped out onto the “quiet area” that was all windows that looked over Grand Rapids.  I dialed Gina and the only words I was able to get out were “I can’t breathe.”  I kept reliving the moment of watching him lay there not able to understand what was about to happen, he looked so calm as the nurse prepped him for the port access. Then as she pushed the needle in watching his lips turn blue as he screamed in pain.  And all Gina did was say “It’s ok, just breathe Jess…that’s the only thing you have to do right now….just breathe.”  I was finally able to tell her in pieces of the horror.  “He’s 3…..he’s only 3….so much pain…nothing I can do.”  I said between sobs.  I remember feeling so out of control to the point of insanity.  I remember how heavy my chest felt.  “It’s over now…Just breathe Jess.” Gina kept saying.  “I have to….do it….again next week.”  I said between sobs again.  “Don’t think about that….it’s done TODAY…get through TODAY.  He’s fine now.  Just breathe and get through today.”  I came back to the present as we were in the elevator riding up to the chemo floor and all quickly I found myself going back to the past to when my husband sent out Zayne’s MRI scans to 11 different hospitals. Texas was the first to call us.  I remember walking into MD Anderson texting my sister at every turn.  I remember the smell of the toy room on the pediatric floor.  And then meeting Dr. Sandburg, the neuro-surgeon.  I remember the confidence in his eyes as he looked at me and said “I saw Zayne’s scans and immediately knew I could help him.”  And before we knew it we were looking at short term apartments and headed down to brain surgery so many miles from home.  I think of the small yet monumental moment of being able to breathe after the first surgery.  Zayne had come through it like a champ.  He was off pain meds by the end of the first day, and was discharged on day 2.    And for a good 6 weeks my family was whole again.  No headaches, no moods, just my little family as it should be.  “Mom?”  My thoughts were interrupted by Zayne looking at me telling me it was time to get off the elevator.  We made our way up to the front desk and got his medical bracelet.  We barely sat down when Rich, the tech who always took Zayne’s vitals for all his appointments, called Zayne’s name.  We walked through the familiar double doors and proceeded to the room.  “Do I have to get a poke mom?”  I looked at Zayne as I tilted my head to one side.  “Why are you afraid of these pokes?  You have your magic cream on, and it’s over in 2 seconds.  Not to mention you’ve been through, not one but TWO brain surgeries.”  I said this trying to encourage him to be OK with this process.  Drawing his blood and having MRI’s will always be a part of his life.  The doctors have said this type of tumor never really goes away and that people just keep it at bay.  I just wish I could teach him to take the small things in stride.  He quit listening to me and distracted himself with washing his hands and playing in the sink.  Sitting in the room waiting for the doctor to come in and give us MRI results gave my mind time again to trail off to the past.  This time I remembered a time 2 months after his first brain surgery.  He walked through the kitchen and I saw the all too familiar look on his face.  “You feeling ok buddy?”  I believe he dealt with pain so much that he wouldn’t know to tell me when his head hurt a little and instead would wait until it was unbearable.  “Yes Mom.”  He said rather annoyed.  Another classic sign he was in pain.  He was only 4.  So young to deal with so much, and this was already with 2 years of symptoms and the diagnosis of a tumor under his belt.  I watched him slowly walk to his bedroom.  I told myself it was nothing, even though I knew.  My mom gut hadn’t failed me yet and it was telling me loud and clear.  10 minutes later Zayne walked back into the kitchen telling me his head hurt.  After another couple weeks and a lot more headaches we scheduled an MRI. Sure enough the cyst had re-inflated almost too its original size.  But it was so soon after surgery that we couldn’t go back in and deflate it so we decided to try another chemo instead.  Everything was stable for a while and then, not but a year later we were headed to TX for another brain surgery.  I was yanked out of my reminiscing when I felt a splash of water on my face.  I looked up to see Zayne mischievously standing there with wet hands.  He started laughing as I gave him a look of revenge. All the sudden his eyes got big and he said “Mom…I have to go to the bathroom.”  As if he waited too long to tell me.  I rolled my eyes and said “Ok…let’s go!”  I took his hand and as we were walking down the familiar corridor of exam rooms on our way to the restroom, we passed the room I got the worst news of my life in. And as I stood by the bathroom door waiting on Zayne I couldn’t help but go back to that dreadful day.  I remembered the oncologist going over MRI scans and I’ve seen enough of them to know what I was looking at.  And I saw it.  It felt like the oxygen was suctioned from the room.  But again I tried to convince myself that maybe I was wrong…I mean I’m no doctor, I could absolutely have it wrong.  The oncologist asked me to step into the hall with her so the kids wouldn’t hear.  Both my boys were sitting on the exam table watching a show on my phone.  We stepped out and I felt the hallway begin to shrink.  She started to tell me of a brand new tumor that was enhancing on his brain stem.  Everything I had feared seconds before had just become my reality.  Tears welled.  Her voice became muffled.  I remember her saying she was going to consult with Texas and also a friend of hers in Boston.  She also told me to keep a good eye on his motor skills as this new tumor was hovering right over the area of motor control.  I had an hour and a half drive home that day with both my boys in the car.  There would be no breaking down for me in that moment.  And when we finally arrived home I was relieved when I heard Zayne ask Ayden if he wanted to go “mining for gems”.  They grabbed their shovels and helmets and jumped on the 4-wheeler.  And they were off…off to Neverland looking for buried treasure.  As soon as they stepped out of the house I let the tears fall and true emotion take over.  I remember trying to wipe the tears out of my eyes enough to see them driving around the pasture.  Watching their smiles and seeing their boyish personalities, I found myself wishing for more time with them.  Their being here with me is why I love living life.  I lost my breath for a moment and when it came back to me I was asking, begging, pleading to God that He would just protect them.  I knew I had no control.  I had no options. I had NO WAY of fixing this.  I didn’t know how to stop that tumor from growing.  And I am not the mom to watch her little boy slowly go downhill from a brain stem tumor.  I had nothing.  I needed God to step in.  I needed Him to show up.  I remember looking out the window at my boys and saying out-loud “I need You to take the angel you have given me and send him with my boys from here on out.  They need him…Please. If I can’t protect them from these things in life show me YOU will. ” I cried hard for a moment and when I looked up at my boys again… I saw him.  My angel, who had walked me through each brain surgery, walked me through every road block and every trip to Texas, and simply showed up whenever I asked.  His wings were so vast and they so easily encircled my beautiful boys.  He hovered over them so protective and yet so graceful.  I remember seeing their smiles, they had no idea, but I did.  I just kept repeating the words thank you.  I watched him for a bit and when I went to grab a Kleenex and came back he was no longer visible to my eyes.  I knew God was answering my prayer.  I came back to the present moment when I heard the door open and out walked Zayne.  “All better?” I asked with a grin.  “Yup” he said matter of factually. We walked back to our room just in time to see the oncologist walking in as well.  “I’m so excited to show you these scans!!!” She said.  I was slightly confused….”They are good?”  I asked.  “Good?  They are GREAT!”  She exclaimed.  Her energy was palpable!  All though, I found myself putting my guard up.  I didn’t want to get my hopes up just to be let down once again 3 months later.  It’s been a while since we’ve had good news that actually stuck.  And as parents in these situations you find yourself preparing for a fall rather than stepping into Neverland believing the impossible.  She pulled up the scans and I saw everything before she pointed anything out to me.  The tumor on the brain stem had shrunk a CONSIDERABLE amount and one of the 3 cysts was completely gone.  I hesitated to jump for joy. I warred with getting too excited. I wasn’t sure if the chemo would keep working.  What if it doesn’t?  What if I get excited and 3 months later the tumor is bigger than it was when we first found it?  I was struggling with mixed emotions.  She noticed and softly took me by the shoulders and said “This is Great news Jessica!! It’s working!!”  I vacantly shook my head and put on a smile.  “Yes!! Yes it’s great, sorry…I’m just….. this is awesome!!” I stammered.  She pulled me in for a hug and I could tell I didn’t give her the reaction she hoped for.  And I started thinking of all the bad news she’s had to give me over the past couple years.  And I realized that these doctors live for days like these, just like we do.  I can’t imagine working in her area.  The days she gets to say ‘The chemo is working’ are probably the best days of her job.  As we left I found myself on a tight rope.  I could truly get excited and this as a true break in our journey…recharge so to speak…rejoice in the good news!  Or I could play it safe as I always do.  Not get over excited so when the other shoe drops I’m not caught off guard.   I called Jake and texted my sister the news.  Everyone was in shock.

“Mom, can we get Chick-fil-A on the way home?”  Zayne asked “Um….Maybe.”  I answered as we made our way out to the parking garage.  I pulled out my phone and called my dad.  My dad is a dreamer.  A positive dreamer.  Only a handful of times can I remember feeling him get frustrated with everything going on with my son.  Otherwise it is always with such sincerity that he will say “It’s all gonna work out Jessie, it just has to.  He’s too strong NOT to beat this.”  And to a mom who’s been EXHAUSTED for 4 years…this is hope.  He answered my call like this “Tell me some good news.”

“It’s working…the chemo is working!!  The tumor is shrinking!!” I exclaimed. Zayne looked up at me puzzled.  I realized at that very moment he didn’t understand what was going on.  And I also realized I’ve never actually involved him in the news before.  We haven’t gotten good news in a while and he’s always been so young.  But he’s 7 now. I got off the phone and knelt down in front of Zayne.  I held both his hands and asked “Do you know what’s going on with your tumor?”  His eyebrows lowered…”No.” he said perplexed.  “It’s shrinking!!  God showed the doctors what medicine would help you and now that pill you take every morning and every night is making that tumor disappear.”  I explained to him with a hope in my voice he probably hasn’t heard in a while.  He let it register for a moment and then with such sincerity said “WHOA….”  with eyes as bright and big as the sun!!  And something happened to me while I watched him enter a whole new world.  The belief I saw in his eyes just spoke hope to me.  A different kind of hope.  I watched him get excited.  “That’s really good news Mom!”  I saw him begin questioning things, wondering how long before it’s completely gone.  It was astounding.  And I found myself question my own beliefs about this tumor.  Why would I want to believe anything different?  Why would I want to waste one more second trying to prepare myself for bad news next?  It was in that moment I decided that even if bad news is around the bend I would rather be in Neverland with him rejoicing, than in Hell waiting for the worst.   I was blessed to watch the bright colors behind his eyes grow stronger.  His cheeks glowed!  He KNOWS, without a doubt that this tumor is shrinking. I can’t imagine what will happen next!  Belief is an incredible thing!!  I feel when we embrace belief we achieve the impossible God intended us too.  And I found myself watching his bright eyes enter into an undiscovered part of Neverland, the part where maybe he doesn’t have to live with this tumor…at all.  And on the ride home we both felt lighter.  We were sprinkled with a little bit of pixie dust today at the hospital!  And there is no doubt in my mind he will spread his pixie dust to everyone he meets!!  Later that day I was also able to tell my other son Ayden of the amazing news!  And you know what I saw?  The same questions, the same excitement and then…the same belief!  And I realized, this was more than Hope…this was Victory.

“All it takes is faith and trust…and a little bit of pixie dust

and you can FLY”

~Peter Pan~