The last few weeks

By Stephanie

Ok, it has been a LONG last few weeks.  Here is a recap…

Payton and Avery made it into the Missoula Children’s Theater play.  If you have never had a child do this, it’s really fun.  They try out on Monday and perform on Friday.  It ends up being a tiring week, but really fun.  And it’s amazing how in 5 days they can put on such a great production.  Both girls had parts with lines, but Payton, my first grader, had a really big part.  She even had a solo part that she sang.  It was darling.  HOWEVER…..on the Friday performance right after her little solo, Payton fainted….on stage.  Then they took her back stage where she fainted two more times.  I was at home, since the parents performance was to be on Saturday.  They called 9-1-1 after the second time she passed out, so by the time we got the call, paramedics were already on their way. 

After a few hours in the ER, we were all fairly confident that the flu we had all had, along with a long week with less sleep and locking her legs on stage was the reason.  However, with Avery’s history they didn’t want to take any chances (seizures sometimes present themselves as fainting spells).  So they set up an MRI for a few days later.  All was clear and she was even better enough the next day to do the Saturday performance.  It was a bit of drama, but good to know one of the kids had NO TUMOR.

Now to Avery.  I wish it was as pretty as Payton’s story. 

I was SURE we were moving to another more southern and much sunnier state.  When it didn’t happen, I was crushed to say the least.  It was a day of lots of tears.  If you know me, you know those don’t flow very often.  But before we knew we were staying, I was so confident we were going, I had rescheduled Avery’s appointments to Feb. 22.  Originally her Ophthalmology appointment was for April 12th and her MRI and Hemo/Onoc was scheduled for March 14th.  I just wanted to make sure her doctors saw her one more time and discussed with then our move and how to follow up.  When we found we weren’t going, I didn’t change her appointments.  Partly because I was still holding onto a thread of hope we would still move.  Ok, more than partly.  That was mostly the reason. 

So last Wed. we went to Ophthalmology and got a shock.  Not only was Avery’s sight deteriorating, but she has NO peripheral vision.  I mean even less than she had in August when she originally lost most of her sight.  Even Avery thought she had had improvement.  A testament to how resilient kids are at adapting.  Her doctor was worried and said if we didn’t already have an MRI scheduled for in the next few hours, she would have called for one to be ordered, asap.  So we headed off to have her MRI and held our breath. But like before, no change to her tumor (the pieces that are left). 

Now we are really wondering….why the change in sight?  It could be that the damage to her optic nerves was there and just hadn’t presented itself.  Kind of like a tree that you cut and it looks fine for six months and then all of sudden is dead.  Same kind of thing. 

OR…the tumor has grown.  Even 1 millimeter of growth might make a difference.  And that small of a growth would not show up on an MRI.  There is no way to know for sure.  They originally thought we would be starting chemo right away.  Like this week.  But after consulting with the some other doctors (tumor board…love it), they think another surgery or proton radiation might be better options. 

Another surgery, if you are thinking “Are you kidding me?”  Just image what we have been thinking.  Including Avery.  It’s daunting.  When you go through this the first time, you are blessed to be ignorant.  The second time, you don’t have the luxury of innocence. 

Apparently, the first time around she had been under 16 hours and even though there was more tumor they could remove, it was not in her best interest to keep her under any longer.  They felt enough had been removed to clear her optic nerves. 

The other option is proton radiation.  The two main downsides to this option are it’s in another state (Boston is the best but Houston is another great hospital) and it will completely shut down her pituitary glad.  That’s a big deal for a 9 year old.  It’s a life time of medication that her body is dependant on.  It also could bring on diabetes, hormone issues and thyroid issues.  It’s a big deal. 

But surgery?  Really?  So we go down on Wednesday.  They will discuss her situation with tumor board again and then that evening we will meet with her team to see what they recommend and how we all feel best to proceed. 

Again we are SO thankful for all the prayers and amazing friends and family that have already helped us so much already and are already offering their help.  It means a lot and know that we really could not do this without you.  The other kids are doing well.  They are worried about their sister and are doing their best to deal with it.  We are trying to keep things as normal as possible (like I went with Avery on her field trip today to the Seattle Aquarium).  And I think we are going to need to take them on a trip to Disneyland when this is all over!