Wednesday, November 21, 2012

Giving Thanks

We had a pretty good week.  We made the trip to Salt Lake again, but this time for a family wedding.  It actually felt weird to be near to Primary's and not have to go there.  It was fun to spend some time with Kevin's family and celebrate something so positive.  It's easy to get sucked into this cancer world and forget that life does go on for everyone else.  We need to be reminded now and then.

  We also decided to get a jump on our holiday celebration by putting up the Christmas Tree and decorating the house for Christmas.  The kids had fun.  Jaxon is fascinated by the tree. I give it a week before he totally destroys everything.

Austin has felt pretty good.  He has had some nausea and vomiting that comes and goes as well as some back pain that is a side effect of the Chemo.  His labs  today were great.  ANC 1600, Platelets 430,000, Hematocrit 31.  So off we went again to get more Chemo.  Austin was happy to see Michael, the Child Life Specialist.  Austin has been saving some jokes to tell Michael so he entertained us all by reciting the ones he knew and then Michael brought Austin a joke book to read and Austin got a kick out of that. We laughed and had a good time...oh yeah and had some more poison infused into Austin's veins.

Having his Port accessed by the Home Health Nurse

Vitals taken, always love the blood pressure cuff!

Same as last time, but lost a little weight

Dr. Marsden gave Austin this mask to play with, he got a kick out of it and insisted on wearing it to the car.

Telling Michael jokes

Telling jokes.  Austin's laugh is so contagious
Getting Chemo and telling jokes.
 Tomorrow is Thanksgiving so I want to take a moment to say how thankful I am for all that we have.  The list of blessings if I were to count them would stretch for miles.  At the top would be each of our family members and friends that add so much to our lives.  Without all of them the last few months would have been impossible to survive.  The outpouring of love and support has been overwhelming and I will forever be grateful.  On this Thanksgiving I am grateful that Austin is doing well with his treatment and that he is tolerating the Chemo so far with only a few side effects.  I give thanks for this special boy and the privilege of being his Mom.  He teaches me daily about courage and strength and having a positive attitude.
Happy Thanksgiving everyone!  I hope each of us takes a moment to reflect on our blessings.  Hug your little ones and tell them how much you love them!  Never take for granted each day you have with them.

Monday, November 12, 2012

Go Team!

Austin has had a good week.  Last weeks Chemo didn't slow him down.  He has felt good and has had lots of energy.  He got his appetite back too since we stopped the 6mp.  After last weeks fiasco, I was dreading the day when we had to do Chemo again.  Fortunately, everything went much smoother this time around.  I have to give a big shout out to "Team Austin" as I like to call everyone that is involved in his care.  This weeks team consisted of:
1. The Home Health Nurse that came to our house, accessed Austin's port and drew labs.
2. The nurse at the Oncology Clinic that reviewed Austin's blood work and called me to talk about Austin's treatment and the plan for the day.
3. The Nurse/Care Manager at Red Rock Pediatrics that is my liaison between our Pediatrician and the Oncologists at Primary's.  She is sets everything in motion for the day.  Did I mention she is amazing?
4.  Our incredible Pediatrician--love love love him!  He assessed Austin and made sure he is well enough for treatment.  He reviews the labs and orders the Chemo.
5.  The Pharmacist that receives the Chemo orders and sends the Chemotherapy to the Pediatrics floor.
6.  The Nurse on the Pediatrics floor that administers the Chemotherapy.  

All of these amazing people had a part in Austin's treatment today.  Yes I know it is "just" their job, but it is very obvious that they go out of our way to make all this chaos as easy as possible for us.  They genuinely care about Austin and want to help him get better.  Kevin and I  have a unique view because we are not only Austin's mom and dad, but we are also an employees of the same company that is treating him and these amazing people are also Kevin's and my co-workers.   We are proud to know them and work with them. So thanks Team Austin!! We love you guys!
Getting his port accessed and labs drawn by the Home Health Nurse

Have I grown?

Vital signs taken

Waiting to be seen by the Pediatrician 

Love his smile!

My silly boy

Getting checked by the Pediatrician

Ready to go!  Chemo time!

Just chilling

Getting hooked up

Watching TV and getting Chemo

Friday, November 2, 2012

Starting IM1

This week Austin is starting the next phase of treatment called Interim Maintenance.  This phase is 56 days long and involves 2 types of Chemotherapy, Vincristine and Methotrexate, given intravenously every 10 days and one Lumbar Puncture with Intrathecal (in the spine) Chemotherapy on day 31.  Each course of Chemotherapy is what they call "count dependent".  This means they will draw a CBC and check Austin's blood counts before every course of treatment.  His ANC needs to be 750 and his Platelet count needs to be 75,000.  If Austin's blood counts are too low, we take the week off and let his body recover until his ANC and Platelets are high enough.  We are excited to be doing most of this phase in St. George with only the lumbar puncture on day 31 in Salt Lake.  The other great thing is that Austin gets a break from the nasty 6mp that makes him so nauseous all the time.

While we are grateful to be able to do most of this treatment in St. George, the logistics of doing it are rather complicated.  Austin has to have the home health nurse come and draw his blood to check his CBC.  The labs are reviewed by the Oncology Clinic at Primary's and if they are "good",  then we go see the Pediatrician for an assessment and to check weight and vital signs.  If all is well, he orders the Chemotherapy medications and we go to the Pediatric floor for the actual treatment.  Ideally, we get Austin's labs done in the morning, go see the Doctor in the afternoon, then go get the chemo the next morning.  That's how it works in a perfect world.  In our world however, things never seem to go that smoothly.

This week, Austin was scheduled for labs on Thursday.  I hadn't heard from the Home Health nurse by that morning so I decided to send Austin to school with the plan to go get him later.  After several phone calls to the Home Health agency and the Pediatrician's office to find out the plan, I was told that the nurse was on her way but that she was in Orem.  Seems that they had my mom's address in Orem as our home address.  So finally we got the nurse in St George on the phone and she said she would come at 2:00.  Austin needs to have the numbing cream on his port site for one hour to make it numb enough to poke, so I went to his school and picked him up and applied the cream.  Our nurse didn't show up until 2:45, drew the blood and said she would put a "rush" on them to get the results in time for his appointment with the doctor at 4:20.  At this point I was late to pick up Madison at school so I rushed back to the school 15 minutes late.  The blood results still weren't back at 4:00 but when I talked to the nurse she said to go in for the appointment because she was sure they would be good.  So we headed across town, running late because Jaxon had a meltdown when I tried to leave him home and then decided just to take him with us.  We got within a few minutes of the office when the Clinic in Salt Lake called to say that Austin's ANC was only 600 so not high enough to get treatment this week.  I am sure at that point several very colorful words entered my brain and one or two may have escaped my mouth under my breath.  We headed home with the intention to do it all again next week.

Friday morning I took Austin to school and when I was on my way home after dropping him off my phone rang.  It was the Oncology Clinic calling to say that the results of Austin's blood work were read wrong the day before.  Austin's ANC was in fact 1000 instead of 600, more than meeting the minimum 750 required for chemo.  What do I do?  I would have loved to say, "I'm sorry, you guys had your chance yesterday.  I have no desire today to interrupt my plans and Austin's school day to spend all day running around for his treatment today."  Yeah, that would win me the mother of the year award.  So instead I think I sighed rather loudly and just said, "Ok, set it up, I will go get him."  

We saw the Pediatrician and then headed over to the Peds floor for chemo.  Now if we had done things according to the original plan, we would have left Austin's port accessed so he didn't have to be poked again.  Unfortunately, when we were told Austin didn't meet counts I de-accessed his port.  This meant another poke.  It didn't go so well the first attempt and the nurse, Justin, had to try again.  Finally, we got the port accessed, labs drawn, and chemo given.

Having blood drawn by the Home Health Nurse

Seeing Dr. Walker, Austin had to have
 a wart burned off his foot

First attempt at port access--Nurses Jason and Christi are awesome!
Second attempt--not so fun now

Ok now it hurts--this sucks!

Ok, port is accessed, pain is over, time for Chemo

Watching TV while getting chemo--notice the very bored sister in the background

All done, smile is back!

Bottom line, cancer sucks.  There's just no other way to describe it.  Austin hates it, I hate it.  I want to take it all away and am so frustrated that it is out of my control.  I hate to see him in pain, I hate to watch the tears roll down his cheeks when he is poked.  No child should experience this!  I know that we have no choice but to stay on this crazy roller coaster, however much we want to just get off.  Our lives are in the clutches of this horrible disease and we are fighting tooth and nail to beat it.  Austin is so strong, and I know he will do it.  I just wish I could make it easier. 3 1/2 years is so long in the life of a child.

 So here's to Interim Maintenance and hopefully the next time we are due for treatment, we can get things to go smoother.