From Bad to Worse

There are times when words come easily.  And, then there are times when it feels like if I type the words that need to be spoken, it will make them even more true.  Once they are written, there is no turning back.  Reality becomes even more real.  This is one of those times.

I’ve sat down a handful of times and tried to compose some sort of an update.  I’ve typed and erased repeatedly.  The best I can figure out is to recap the last week, so here goes…

We spent our only two outpatient days last week repeating every possible scan to find out what progress has been made with chemo. They were two very long days running from floor to floor of the hospital getting labs and scans as ordered.  There were frustrations that you would expect like the fact that every single department of a hospital works completely independently, without communication with the other areas serving the same patient.  And then there were major frustrations – like being told that Mason would return from his MRI in about 40 minutes and we would be updated along the way because he’s only NINE.  This did not end up being true at all.  The mama bear in me came out in full force after an hour and a half without one single update.  After an apology and another full hour later, his 2 1/2 hour MRI was complete at 6:30 pm on Wednesday.  So, even though we got to sleep in our own beds for 2 whole nights, we were worn out by the time we had to turn around and come back Thursday morning for more chemo.

On Thursday, everything that could go wrong seemed to.  Mason vomited, delaying us getting ready.  So, all of his morning meds and fluids came right back up, leaving him not even close to ready to start chemo.  As we awkwardly wheeled all of our possessions inside the hospital for our stay, Mason’s brand new, favorite Star Wars cup that his teacher had just gotten him went crashing to the floor and broke in the entry of the hospital leaving ice water everywhere.  No more favorite cup AND no more fluids to push in order to get his dehydrated body chemo-ready = lose, lose.  We then sat in admitting for an hour before getting our room.  There were three hospital employees working at getting us upstairs with absolutely no luck.  They finally said that it was an issue only his doctor could fix.  So, I pulled out my phone and called the doctor.  Then I handed the phone to the lady in admitting.  Her jaw dropped as she couldn’t believe a doctor would answer his cell – one of the perks of having a child who needs constant medical care that I’d gladly give up to have my healthy boy back.  Within a few minutes we were released to our room.  We were told we were going to room 4488 and we immediately knew that was wrong as there is no such room number.  The poor lady didn’t get anything right and she felt bad.  We felt even worse when we got to the peds floor and found out our room was a tiny one.  We’ve gotten a little spoiled by getting the bigger rooms about 1/2 the time and our hearts were set on it.  But, we tried to make the best of it.  Mason was feeling good by now even though his urine was a light brown because he was so dehydrated.  We were settling in and I was beyond anxious to find out the results from all of the scans. I was actually a little excited because I just knew it would be good news.  We’d put in 9 hard weeks of chemo and we’d prayed like crazy.  Everyone we knew was praying.  What more could possibly be necessary?

Finally, I caught one of Mason’s doctors and a nurse practitioner (both women) in the hallway and happily asked if they had had a chance to review the scans.  They told me they had seen them and would share the information with me soon.  I can’t even explain to you how anxious and excited I was at this point.  I couldn’t wait to call Matt and share the good news.

Looking back, I should have gotten a clue when they asked me to meet them in the hallway.  I’ve never, in all of this journey, had a conversation with a doctor outside of Mason’s room.  But, I didn’t get it.  I was determined to turn this bad day around.

I sat down in front of a computer and a box of kleenexes was immediately placed to my left.  I don’t remember much of what was said.  I remember trying to decipher what was on the screen in front of me – no pictures, only foreign medical words.  Somehow I thought I could figure out what they were going to tell me faster just by reading the screen.  All too quickly I remembered that I have no medical knowledge whatsoever, so I should probably start listening.  I heard them explain to me that the tumors were all a tiny bit smaller, and before I could even be happy about that, I heard the rest of the sentence, “…but, they have all increased in activity.  They are twice as aggressive as they were two months ago.”  Crunchy Kleenex number one came out of the red box and was instantly soaked by my uncontrollable tears.  Many other words were spoken, but I will never forget the two words that stung so deeply that I felt physical pain – “worried” and “grim”.  In all of the conversations we have had with multiple doctors along the way, they’ve always been the ones to comfort our doubts or remind us that this is their specialty.  Now, all of the sudden, they are looking at me with sad eyes and asking me if I would like some coffee.  I wanted to scream and shout but everywhere I looked I could see a nurse that I’ve come to love or an aide who has smiled while testing urine a hundred times a day, or a mom who has her own pain.  I declined the coffee, picked up the handful of Kleenexes I had soaked with tears and mascara, and I walked and cried all the way to the elevator.  It wasn’t a silent cry, but a loud, ugly, sniffling sob that I couldn’t control.  I wondered what the other people on the elevator must think, but I didn’t care.  I wondered how long I had until Mason would ask where I was because I never leave him.  And, I knew that there was no way he could see me like this.

I found myself in an outdoor garden area that Mason and I like to go to when the weather is nice.  It’s beautiful and well taken care of with a rock fountain and colorful flowers.  And that made me angry.  I didn’t want it to be beautiful because my child was sick and the scans made his doctor use the word GRIM.  And, it felt wrong for me to be sitting in this beautiful place when my world was so ugly.  Then I realized I needed to slow down and just focus on breathing because I was finding it hard to even get a breath.  I’ve never experienced that before and it was a little scary, but at least it made me slow down and try to regain control.  I called Matt.  Poor guy.  There he was in the middle of teaching and I called him and said, “The tumors are worse.  I can’t do this.  I need you now.”  And then he hung up the phone and had to step back into his teacher shoes and finish the afternoon.

The next day, Matt and I met with one of Mason’s surgeons who talked out tomorrow’s procedure for us.  This guy is beyond confident, so it’s almost impossible to leave a meeting with him and not feel better.  I get the feeling that he is excited to add Mason’s rare case to his repertoire.

I could go into great detail about the surgery plan, but after 36 whole hours at home, we have to be at the hospital by 5:30 am, so here it is briefly:

7:30 am Wednesday, May 11 – Remove ~10 cm of tibia in his right leg.  Remove ~20 cm of fibula in his right leg.  Fold the removed fibula in half and secure it to remaining ends of tibia with a carbon fiber plate and screws.  Staples, no cast, lots of pain, crutches.

Send tibia to pathology and try to get results sooner than every other time so we can plan the next surgery on his femur sooner rather than later.

Recover, then start more chemo as soon as possible (a few days later).

I’m guessing we’ll be in the hospital a minimum of 2 weeks for this stay.

Please pray for wisdom for all of the doctors and nurses working with Mason.  Pray for pain management and patience.  Pray that Mason maintains a positive attitude and recovers well.  Pray that Alli is well supported during this time.  Pray that our family is bonded tightly instead of torn apart by continuing to live separately.