Final Stretch

What a roller coaster we have been on over the last month.  We found out on December 15th that Madi's brain cancer had spread like wildfire since the Halloween MRI.  There are about four new tumors growing in and around the area where the original tumor was removed, a new one on the other side of the brain, and another one deep in her brain next to her brain stem.  The experimental options for treatment we considered were moonshots at best.  But given how aggressive this cancer is, unless they panned out within a few weeks, we knew we would run out of time to try them. We gave her an older chemo drug just before Christmas to try to slow the tumor down a bit and buy us some time to get into a clinical trial. We knew more than likely we were headed into the final stretch with Madi.  And that final stretch was likely months, not years like we'd hoped. We had to start facing the hard reality that she was dying.

I think many people around us expected this - had basically already said good-bye to Madi (based on the steady stream of stories and comments we received about dealing with the death of a child).  But parents (even very informed parents) of a child with a terminal illness never give up hope that we- our child - will be the exception.  Sometimes that hope is the only thing that gets us out of bed in the morning.  We live hoping someone or something will swoop in to save her at the last minute, but also try to live as if every day is the last one we will have.  It's such a strange and exhausting place to be.

We made the decision months ago that our goal with Madi was to fill her life with as much joy and happiness as possible.  This child has lived forty lifetimes over the last nine months.  She has endured surgeries, medications (and their side effects), daily radiation for six weeks, hair loss, weight gain (from the medications), stress of not knowing what was coming next, missing out on fun things she could no longer do, physical pain and nausea that I cannot begin to understand, and the death of a sibling,. We have tried to counter some of this by trying to increase fun and laughter, special trips and outings.  Our friends have spoiled us with gifts and fun things to do.  Last summer we helped Madi develop a bucket list which we've been steadily working to accomplish. Kurt has been posting videos of the "bucket list moments" on Facebook. If you haven't seen them, you can watch them here. The first video was posted on December 9th even though we started the activities in August.

When we found out the bad prognosis, we pulled the kids out of school a week early to go to Grandma's house for Christmas.  We spent two wonderful weeks with family celebrating.  My sister said she had a nagging feeling a few months ago that they should fly out to Indiana (from Utah) for the holiday, even though they rarely spend it there.  We were so touched and so grateful because her daughter, Claire, is one of Madi's very best friends.  Five out of the six Rockwood siblings and their families came to Indiana.  The sixth was spending Christmas with another very sick relative otherwise he likely would have come as well.  We have been overwhelmed with the love our siblings have shown to our family and cannot imagine how we would have made it through all of this without them.

There have been many other things that have brought Madi so much joy, including a relatively-rare Christmas Eve snowstorm, a month-long slumber party with Mom (she's needed someone with her 24-7 since December 18th given her unsteadiness walking and loss of function on the left side of her body), lots of late-night giggling fits (because what else do you do in a month-long slumber party?), personalized video messages from each of the cast members of her favorite show, Studio C, wishing her a Merry Christmas, an autographed picture and letter from her writing hero, J.K. Rowling, and an iPad Pro she uses several hours each day to do color-by-number and listen to audio books (usually Harry Potter- she is finishing up her 13th iteration of the recorded series). I often see her laughing at emails and text conversations with her friends and cousins. Grandma put in a good word with Santa about the iPad after Kurt was hesitant to invest in a laptop for her. Thank goodness for Grandmas :). 

One of the miracles of the last two months (and there have been many) was a wonderful trip to Orlando over the past week, courtesy of the Make-a-Wish Foundation. If her doctors were a little nervous about her going to Indiana for Christmas, they were even less excited about the prospect of a trip to Orlando.  Kurt said he kept feeling like we should consider it, but I was absolutely against it.  I kept replaying all the worst-case scenarios over and over in my head.  So we fasted about it.  As we were praying for an answer, I felt the super-peace come back and the answer of yes, we should go.  Yes, yes.  As soon as the prayer ended,  I told Kurt what I'd felt and we decided to go forward with plans; but as the day wore on, I started panicking again.  What if, what if?  I'm so risk-averse when it comes to health, this was probably the hardest answer for me to follow. 

So I prayed again and again felt peace.  I could almost hear a voice inside me telling me that Madi's health would be preserved for as long as we wanted to stay in Orlando.  Kurt joked that we would be moving down there for good. :) The doctors tentatively agreed to it, pending Madi's continued health.  Make-a-Wish was absolutely amazing and arranged an entire trip in less than 24 hours. The morning of the trip, Madi surprised her siblings (we had told them they were staying home from school to go to dentist appointments :)), and we headed to the airport.  Madi got increasingly worse as we headed to the airport- headache and nausea, which progressed to a migraine and vomiting by the time we arrived.  While the volunteers from make-a-wish helped us check in for our flight, she was in such pain, we pulled the plug and took Madi to the hospital instead. We spent 6 hours in the hospital, getting an MRI and additional medications, and then went home for the night. Madi was still not feeling well.  I won't lie.  This was not my best day.  I was so mad!  Why? Why would God tell us - even encourage us- to take this trip if it was going to end up like that?  I did not even want to go in the first place, so why would He support us if it was going to end up with Madi sinking to the depths of despair and Becca sobbing in bed saying, "why do such bad things keep happening to our family???"  I think that night was one of the lowest nights I have had. I felt abandoned and questioned my relationship to God and my ability to receive answers to prayer.  I had a yelling prayer with God in the car that night as I drove alone.  I sobbed "why" over and over.  I am not proud of this or of my momentary lapse in faith, but it happened.  The next morning, Madi started feeling better and better.  The medications they gave her at the hospital the prior day were kicking in. By mid-morning she seemed even better than before.  The doctors sent a nurse to our house around 11am to assess her, and they cleared her to go. We decided to go forward with plans and catch the 2 pm flight.  I was on pins and needles the entire flight down there, but Madi kept feeling really great.  We put her in a wheelchair (a very comfortable one), and she had a blast that week!  We made some really incredible memories.  NOW, I see the wisdom in the direction we received.  This trip was an indescribable blessing for our family.  It was an escape from cancer, which is what Madi had desperately wanted for months. And I see the wisdom in waiting a day. That day in the hospital allowed the doctors to adjust her medications so that she wouldn't have problems in Orlando, and it allowed them to do a quick MRI to see what was going on, giving Kurt and I peace and clarity of mind that there were no really acute problems that would cause issues while we were away.

She had no health problems in Orlando, but 8 hours after we landed back in Boston (Thursday evening),  she had the first of a series of tonic clonic seizures that happened over a 12 hour period (the violent shaking kind also known as Grand Mal seizures - very scary to witness). While the doctors have been able to get the seizures under control quickly, the headaches and nausea persisted until Saturday morning.  So we stayed the night in the hospital so they could try to address these symptoms and help her feel well enough to hopefully travel home and be comfortable there. She's had a couple other problems pop up since Saturday so we are still in the hospital, but we are hoping that today (Monday) we will be able to go home. 

A week ago, before we left for Orlando, the doctors estimated that Madi probably had weeks left to live. It's impossible to say at this point if that means one more week or several weeks, but it's not much longer. We haven't told Madi that she's dying, and currently we aren't planning to tell her, unless she asks.  It feels like an unbearable burden to put on a twelve year old.  If hope is what has kept us going, I think hope is what helps Madi find joy.  In October, an apostle from our Church visited Boston and offered to give Madi a special blessing. For those who are unfamiliar with our faith, we believe that God has restored the original organizational structure of Christ's church to the earth: He calls a prophet and twelve apostles to lead his church during this time, just as He did during Biblical times.  Apostles travel around the world teaching people about Christ.  We often don't get to meet them in person, but this Apostle heard about Madi and asked to meet with us. Before the blessing, he told her that if the time came when she would have to leave earth before her parents, it would not be scary.  She would not be alone at any time during the process. He said people from the other side that she knew and loved would come to get her.  He also blessed her that she would not be taken even a minute before it was her time to go.  While a rather traumatic experience for all of us at the time, it gave us an opportunity to talk about the reality of Glioblastoma and the real possibility of death. After several hours of heart-wrenching discussions, Madi said "I don't want to talk about death any more."  Then later she said, "Mom, I've been thinking about it and I really don't think it's my time to go yet."  After that, she's been very happy and upbeat and has managed to enjoy life.  Since then, anytime we've talked with the doctors about her cancer, she's asked to leave the room, because she says she doesn't want to know what is happening. She's a very smart girl and we've told her that the medicines aren't working, that the cancer is growing, and that she almost died from it 9 months ago because it had grown too large. Last week when we arrived in Orlando, she said "You know if I could have any superpower, it would be the power of healing, so that I could heal myself." She understands what she's up against, and is choosing to remain hopeful. So currently our plan is to not force this heavy weight on her, but rather allow her to be hopeful as long as possible, even until the end if that's what she wants.

This is such a heavy and intense time for us, but we're trying to help make Madi as comfortable as possible and savor every moment with her. We are so appreciative of the countless ways many of you have brightened her day and lightened our load so that we could focus all of our time and attention on her and the other kids. We have been overwhelmed with the outpouring of support, from my mom and siblings who have basically watched all of our other kids over the past month so we could stay at Madi's side, to friends who have sacrificed countless hours helping us with meals, laundry, cleaning, childcare, and countless other ways, to the thoughtful notes and gifts for Madi and our family, to Kurt's work colleagues who have taken on the majority of his work, to doctors and nurses who go above-and-beyond in caring for Madi, including house calls and late night phone calls and texts (even at 7pm on Christmas Eve!) to help get Madi in a good spot to enjoy her last days, to all the random strangers who have done so many things to help us. If there was ever any doubt that God was aware of us and our hard situation, it is undeniable as we see His attention and love for us  through those around us.  One day, I will write a blog post about this because the stories are incredibly touching.  So thank you to all of you for being literal angels to our family right now.