Saturday, December 04, 2010

Yay! Yay! Yay! A plan, A plan, A plan!!!!!

Sorry I have been slow to update our blog.  We have been through a whirlwind of information overload, planning, and WAITING. 

The news after Matt's spinal MRI was not good.  The tumor in the spine is back.  It is creeping in at the top of the spine and through an area of the brain called the 'Circle of Willis' - basically a huge collection of arteries and veins.  There is also tumor at the base of the spine.  These are called 'drop-mets' and are little bits of tumor that have broken off, gone through the CFS (Cerebral Spinal Fluid) and landed at the base of the spine.  None of this is good news, but I'm trying to remain positive and remind myself that we had all these things when he was initially diagnosed, as well.

Part of the wait was due to a radical shift in our 'plan'.  We decided that since Primary Children's Hospital does not have a Neuro-Oncologist, that we needed to take Matthew somewhere a little bit more specialized.  We discussed several options and ultimately felt the best about St. Jude children's research hospital.  It is consistently ranked #1 in pediatric cancer care of all types and they treat a lot of children with brain tumors.  Once we made that decision, and St. Jude agreed to take Matthew, it was like a burden lifted from me.  We all feel very very good about our decision to have him treated there.  However, we had to begin the waiting game.  First, all of his records had to be sent to St. Jude.  Then, his pathology slides had to be sent to St. Jude, then we had Thanksgiving....... Aaaaaargh!  How can there be a holiday in the middle of our CRISIS?!?  LOL!  Then it was the weekend.  Then St. Jude had to send for a bit more information from pathology.  The wait has been agonizing, but today we finally got the go-ahead and the plan.  Matthew and Audrey and I leave for Memphis bright and early Monday morning.  We will be staying for a month.  (Don't talk to me about the whole Christmas thing.  I'm in denial about it.  We'll take it day by day.)  At St. Jude, the patients live 'on campus' but are not 'in-patient'.  Matt will be closely monitored, to evaluate how well he is tolerating this medication (AZD-217).  The pathologist at St. Jude agreed with the pathology of Pilomyxoid Astrocytoma and thought it had some Oligodendroglioma features.

So, today we'll get some laundry done, pack up our things, and get ready to go (oh, and go to Salt Lake to pick up Will's skis - I think Warren, Will, Nate, and Drew will keep sane by skiing.  A lot.)  Thankfully, we have a tremendously wonderful and supportive ward and neighborhood.  Everyone has offered to help, and I really do think they will do just about anything if it means helping Matt.  I'll be trying to arrange a preschool situation for Jake and then he'll probably have a play date with a buddy in the afternoons.  Carolyn and my mom will also take him some of the time.  The big boys are easy, since they are in school all day and Warren works from home.  Being able to bring Audrey is a huge relief.  I was really obsessing about what to do with her.  She is sort of a mama's girl and is only 18 months old.  When I learned that I could bring her, I felt that everything would be fine.  I am so thankful Warren works from home and that he is such a confident and competent caretaker to our children.

Matt is still doing well.  Neurologically, everyone who checks him out, is amazed.  He has very few symptoms at all from his cancer.  He had a port placed last week and that has made him a little bit sore and a little bit tired, but by the middle of this week he was wanting to go to school and was back to his normal self.  He is just upset about having to miss so much school.  :)  That's my Matt!!!  His school wanted to know what they could do for him and I thought that maybe some sort of project to benefit St. Jude hospital would be a good idea.  Then, Matt could be involved and 'give back' in some way, as well.  His teachers are wonderful and have taken the initiative to contact St. Jude and see what they need.  They have undertaken a huge project of making fleece blankets, pillowcases, and hats for the patients.  Then, Matt will be distributing them.  I think it's wonderful!

I'll try to update when we get there, and keep everyone posted about how he is doing with treatment.

Thanks for your support and love, everyone!

P.S. We had some photos taken a few weeks ago with Cecily.  She is AMAZING!  In approximately 5 minutes, in the pouring rain, she got these photos of our family.


Katie said...

You all are in my prayers! I hope that everything goes as well as possible, both in Tennessee and at home.

Gorgeous pictures!

Cheryn said...

Thank the Lord you now have a plan although I"M sure the waiting game is agonizing. I'm happy you feel some comfort after things started coming together. I can't imagine how you are keeping it all together. Sending lots of love your way and prayers to our loving father in heaven.

Amanda said...

What a lot to take in - though I'm grateful you are being well taken care of by St. Jude and at home. Will the rest of the boys come out to Memphis for Christmas? We will keep you in our prayers.

kristin said...

Hi Allison,
My prayers are with Matt and your family!! I'm so moved to hear Matt think so much of others and what he can do for others. I'm am going to make some fleece blankets for the hospital for Matt to pass out!! If anyone back here from your church would like to join in, pass along my email-
Thinking of your family and love the pictures!!
Kristin (Deming) Dunbar

Handsfullmom said...

What a plan it is, too! You are in my thoughts and prayers. And as for Christmas, My uncle is an emergency room doctor and his wife said the kids have learned not to care what day it is -- you can celebrate it in January if necessary.

I'm glad you live in such a supportive ward and neighborhood.

The Falkers said...

Thinking of you sweet friend! TONS of love and prayers are coming your way!! I am glad you have arrived! I love when there are plans!!

XOXO! Let me know if there is ANYTHING I can do to help your family here!!


Ben said...

Our family keeps you and Matt in our prayers. So glad that you have peace with this decision...I have heard GREAT things about St. Jude. Matt-hang in there. You are an amazing and strong guy. We love you and wish all the best for you.
PS: The pics are beautiful.

Eliza said...

There just aren't words for the wonder that is YOU, Allison - and for the beautiful family you are fostering. I know you must be feeling EVERYTHING all the time. But to have the kind of courage that God is asking you to extend daily is remarkable.

Matt is an absolute dream. What a guy!

We just love your family. You are in our thoughts and prayers!

Eliza Dawson

Allison said...

You continue to amaze me! I read your story and am first of all amazed at the expert you have been forced to become and second the strength you and Matt continue to have through all of this. I can't even imagine juggling 6 kids let alone the turmoil of a life-threatening disease. Like I said, AMAZING. It's people and families like you that are the unsung heroes of this world. Good luck with your new plan and I'll be thinking of you and Matt every step I take in my marathon training. . .I'm running for a cure, for a reason to hope, for your family. :)

The Huffies said...

Love this post and love the pics - what a beautiful family. I got all teary when you talked about Matt's school helping out - it's amazing how many people can be touched and changed by hearing one child's story. Our prayers will be with you!

Huish Family said...

We wish you nothing but the best as you head to Memphis. We look forward to the updates, and you are all in our thoughts and prayers. We had the experience of working with Dr. Alberto Broniscer from St. Jude's neuro-onc during Sadie's battle/after (with donating her tumor to research). Nothing but kindness and compassion from all who we came in contact with - you are in good hands. Matt, you are the man! Hang in there, pal!

All our love,
The Huish's

Celeste said...

Glad you made it - Christmas at St Jude will make up for any lonely feelings - and in case you didn't bring empty bags, they give discount shipping through Fed-Ex there at the hospital. St Jude has an amazing way of making the whole hospital experience fun for the children. Praying for great things to come from your time there.
Valerie Grace was treated there almost 2 years ago and her tumor is now 70% smaller.