Test results and treatment plan

Thank you so much to each of you who have been praying and anticipating results and treatment details alongside us.  There was a lot of information and this is all very new to me, but I'll try to communicate what I learned today as best I can.  

First off, cancer means there are cells that are growing too fast somewhere in the body.  Josiah's official diagnosis is T-cell Lymphoblastic Lymphoma (T-NHL).  They believe his cancer started in the Thymus and spread to the lymph nodes next to it and then into the lymph nodes in the neck and adenoids.  They didn't find any cancer cells in the bone marrow or spinal fluid!  All this information determined his disease is at stage 3.  Standard treatment for stage 2 and 3 is the same.  There will be a 4 week induction period where they try to wipe out all the sick cells and put him into remission.  At that point, they evaluate his response and decide what course of action should follow.  We can expect to better understand the nurses' buttons that say "cancer sucks" during the first 6 months of treatment.  For the next ~2.5 years treatments are less intense, hair can grow back, and a kid's life can feel more "normal".  Children are resilient and researchers have made remarkable strides in achieving a high survival rate.

Josiah's golden birthday (turns 4 on the 4th) will mark his first chemo treatment.  He may be released as early as Thursday depending on how he does.  After that, it is weekly outpatient visits for the next few weeks before the next evaluation period.  

This last week I have thought about life and death and hope and truth in new ways.  Who do we run to for reassurance?  Where do we go when we get that lump in our throat?  What do we do to avoid the pain?  When the rubber meets the road, where does our help come from?  

Psalm 121:1 "I lift up my eyes to the hills- where does my help come from?  My help comes from the Lord, the Maker of heaven and earth."

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."

No news, but great people

We missed the doctor by about 20 minutes tonight during our hand off so we will visit with him in the morning.  It sounds like we will learn test results and a treatment plan then.

Aaron was with him during his spinal tap and port procedure.  All went well.  Josiah was just one of several cases that got pushed back or delayed yesterday.  Aaron said every person involved in Josiah's procedure today was not scheduled to work, but chose to come in today because there were a lot of kiddos that needed care.  Phoenix Children's is amazing because it is full of amazing people.

Take the cafeteria for example.  The food is better than a lot of restaurant food and the atmosphere is peaceful and interesting.  If you are lucky, a gentleman at the Italian counter will whip you up a dish with a smile and the flare of a performer.  He remembered me the second time I came through (this time for the seafood special).  I thanked him and asked his name.  "YO ADRIAN!"  I don't believe that's his name, he just loves it when people walk up and call out to him like that.  :)

Slow Going

Friday wrap-up

Today was supposed to bring answers. It hasn't
Josiah was scheduled for surgery at 2pm to get the medicine button implanted, have a spinal tap (take a sampling of spinal fluid as a test for cancer cell activity in the brain) and receive his first dose of chemo.
At 645 the doctor came to Josiah's room and told us it wasn't going to happen today, they had complications with a procedure earlier in the day that put them behind.
The toughest part was that he couldn't eat after midnight in preparation for the procedure. He tore through a PBJ sandwich, a brownie, peas and cantaloupe as soon as we got the all clear.
He's been rescheduled for 230pm tomorrow.
We close today with no new answers from yesterday's testing. Last night the Dr came by to walk us through the  PET scan which confirmed tumors in the nasal area, throat and upper chest. The initial results indicate no tumors in the abdomen or testicles.

Our little trooper is hanging in there. Below he's putting stickers on the Highlights magazine from Grandma Nancy

Boo!

Last year today I left the hospital with a newborn.  This year I arrived at the hospital to find a happy little transformer who had "won" several little prizes at a morning carnival with Daddy.  Someone donated enough costumes for every child to choose one to keep.  I could go off about how amazing this place is, but I'll save that for another time.

He had a PET scan, CT scan, and bone marrow biopsy today.  Everything went smoothly and hopefully I will be able to update you with results in the next couple days.  Tomorrow he will have a Spinal Tap with some chemo.  Even if they don't find lymphoma in the spinal fluid, they have found it best to do some treatment rather than risk missing it and later find tumors in the brain.

He is also scheduled to get a "medicine button" at 2pm.  I better explain that one because I made the term up.  :)  This is a port that will go straight into a major artery rather than through an IV.  He is so excited to have both hands free!  

I was also able to get a little better idea about long term treatment expectations and was told 3 years of monthly visits in addition to medicine taken at home.

I am overwhelmed by the ocean of care and support of so many people.  Not a "drowning in the middle of it" overwhelmed, but a "standing before the vastness of it" overwhelmed.  I am grateful for each kind word, deed and prayer by our friends, family, and those we have yet to meet.  

Phillipians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  

I get it.  In a way I never have before.  Praise God.

Josiah's Journey

First off, I want to thank you for loving Josiah and caring about our family.  I have been in an information and emotional whirlwind the last 24 hours (without my computer) and have not been able to communicate with so many people who care so deeply.  Thank you for your patience and understanding!

Josiah went in to have his adenoids taken out, and tubes put in his ears last Friday the 25th.  The hope was that this would give him relief from all the congestion he has been having.  In addition, they biopsied some lumps in his neck that were "weird looking lymph nodes."  The surgery went great.  He is hearing much better and breathing through his nose somewhat better.  Unfortunately, they found lymphoma (cancer) in the tissue they biopsied.  

He has begun further diagnostic testing to determine the severity of his disease as well as establishing baseline information for treatments to come.  Tomorrow he is scheduled to have a PET scan (assessing metabolic activity), CT scan (identifying any unknown tumors in his chest and pelvis), and a bone marrow biopsy (see where it has spread to).  I hate to leave you with questions, but at this point that is about all we know.  I plan to post updates here as we learn more.

As I was driving him to the hospital yesterday I thought "I wish it were me instead of him."  In that moment I experienced a fresh glimpse of God's love for us.  I invite you to pray for Josiah, our family, and anyone we meet along the road that lies ahead. 

Fiesta Bowl, project week, and SNOW

The year started off by welcoming thousands of purple clad people to our neck of the woods for the Fiesta Bowl.

Josiah, Mary and David show their enthusiasm after the pep rally.

The Wildcat's pep rally with Sarah's parents and her sister's family.

Mary presented "The Dog and His Shadow" when she returned to school in January after project week.

Aaron took the kids sledding in Flagstaff.  They had not seen snow since we moved here in 2011.  Speaking of, here are two things Josiah heard at story time that we never heard in Kansas:

1. How many of you have visited the snow this season?

2. This is not real snow (the librarian clarifies as she hands out pieces of polysester fiber filling).  

December 2012

December was full and fun!


My sister Anne and her son Collin came to visit and celebrate my birthday.


A whole lotta nursing going on!


Family photo taken at church on Christmas Eve


Grandma Nancy visited around Christmas break.