Happy Halloween!!

Austin has enjoyed his break from Chemo this week, and we have enjoyed not having to drive to Salt Lake.  Austin is finishing Consolidation and will start the next phase on November 2nd, provided his blood counts are high enough.  It has been a pretty good week.  The biggest complaint Austin has had is constant nausea from the 6mp medication that he has to take every night.  I talked to the Oncologist at Primary's and she suggested adding Benadryl in between the Zofran that he is already taking.  I think this is helping a little, although Austin is still very nauseous every morning and for the most part he won't eat breakfast and eats very little the rest of the day.  I was really becoming concerned about the possibility of dehydration but he has managed to drink enough to avoid that.  To add insult to injury, his teeth are very sensitive to cold right now and he won't drink anything below room temperature, and that has to be with a straw.   I have been searching St George for a sensitive toothpaste that is not mint flavored.  Since Austin was a baby, he has had an intense aversion to mint flavor.  This includes everything--candy, ice cream, and especially toothpaste.  At about 18 months old I remember giving him a bite of mint chocolate chip ice cream with the result being he promptly gagged and threw up.  So needless to say, the availability of a non-mint toothpaste that is for sensitive teeth has been a challenge.  If any of you have any suggestions, please let me know!

The other challenge this week has been the never ending cold that Kevin and I managed to find and invite into our systems.  We have been miserable and I was just sure that Austin was going to get sick and miss out on trick-or-treating.  Maybe it's because I have been bathing him in Purell or more likely it's a result of my constant praying for his health (I'm pretty sure it's more like whining and begging at this point) but so far Austin has evaded the plague.

So the Halloween festivities commenced.  Austin chose to be a Ninja (big surprise since it has to be a costume that involves a big sword), Madison a Genie, and Jaxon chose to be Thor.  We had a great time Trick-or-Treating and being with friends.

The Red Ninja

Showing off his mad sword skills

My little Thor--Jaxon is obsessed with the Avengers

The sweet Genie

Trunk or Treat

Bumps and Bruises

If you read my last post you will see that Austin was feeling great-- no pain, counts high, feeling good.  Well, that brief respite lasted only 24 hours.  Austin was in our backyard when he slipped in some mud and landed on his back.  He had the wind knocked out of him and really bruised his back.  I also had to pull about 20 splinters out of his hands.  He stayed home Monday morning from school because of his back pain and some pretty nasty nausea and vomiting that I think was a combination of the 6mp and the Oxycodone I gave him for pain.  Then two days later at school, Austin tripped and fell, banging up his knee and elbow.  Poor kid just can't catch a break.  I decided I need to put out applications for new guardian angels, since the ones he has seem to be on vacation.

Thankfully, this weeks injuries were minor and were healed after some band aids and some TLC.  Thursday found us once again on the road to Salt Lake City.  We all hate the long drive and can't wait for a break.  The kids do well in the car with the help of movies and various electronic devices.  A nap or two doesn't hurt either!

Stopping for lunch in Beaver.  I have no idea why there
 is a huge rocking chair in front of the gas station, but of course the kids had to climb on it.

Sometimes it's hard to find a comfy spot to take a nap!

We were back up at Primary's bright and early Friday morning.  It was a fairly smooth visit.  After weighing and measuring vitals, Austin had his port accessed, labs drawn, and we went to the Rapid Treatment Unit for his Lumbar Puncture.  Lindsey, the Child Life Specialist found us and hooked Austin up with the Ipad to pass the time.  

Checking Oxygen Saturations

Austin's least favorite thing, checking his blood pressure

checking into the clinic

Getting weighed--he was the same as last week

Getting checked by the Oncologist

Ready or not, he will soon be sleeping!

Accessing his port, drawing labs

Playing the Ipad to pass the time

So the visit went well.  It will be the last LP in this phase.  He now has a week off before starting the next phase of treatment, Interim Maintenance.  The best news of the day was that we don't have to be back up to Primary's until day 31 of this phase which should be some time in December.  In the mean time, we should be able to do Austin's chemo at Dixie.  Hooray for a break from weekly drives up north!  Austin's counts were lower this time, so I am holding my breath while he is a school this week.  Stay away germs!!!

Feeling Good

Back to Salt Lake--the road seems to get longer every week.  Thank goodness for Grandma's house.  Things would be even harder financially if we had to pay for a hotel every weekend.  Austin woke up Friday morning ready for another trip to the Oncology Clinic and a lumbar puncture.   He can't eat breakfast because they sedate him for the procedure.  He doesn't love being hungry all morning, but now that he isn't taking the steroids, the hunger monster doesn't come out as bad.  This Friday he woke up feeling really good and had more smiles and energy than I have seen him have in months.  We were told this month should be better than the last but I didn't expect him to start acting like my normal kid.  I have missed him!  He was teasing Madison and rough housing with Jaxon and I couldn't help but stare and wonder where he suddenly got all the energy from.  You can tell from these pictures of him at the Clinic that he is in a better mood. 

Getting his vital signs checked

Checking his weight.  This is the first week that he has
 lost weight instead of gaining.

Getting measured.  I always wonder if they
 expect him to get taller every week.

Getting his port accessed.  He is a pro at this by now.

Austin has to wear a mask when they access his port
 to avoid a line infection.  He gets a numbing cream as well as
 this cold numbing spray so he doesn't feel the needle go in.

With Rachelle, the Child Life Specialist

Austin's counts were great this week, another reason he is feeling so good.  This is also the first week in months that Austin hasn't had any pain.  No wrist, leg, jaw, ankle, finger, hand, head, or any of his other past pain locations.  This is huge!  I am so excited he can feel better for hopefully awhile.  So we left the Clinic and headed down to the Rapid Treatment Unit for his lumbar puncture.

Love love love that smile!!!

Being assessed by the Nurse Practitioner, he is giggling because
 she is tickling his leg that was sore to see if it still hurts

Hanging out waiting for the Doctor to see him

Doing his favorite thing

Playing a game with Lindsay, Child Life Specialist while the Anesthesiologist
 gets ready in the background to sedate him for his lumbar puncture.

Playing up until the last second 

They let one of us in the OR to be with him until he falls asleep.  I'm sure smaller kids need a parent, but Austin is mostly oblivious to anything but the game he is playing.  They push in his medicine and he falls asleep while still the pushing buttons.  They have to hold the Ipad for him so it doesn't smack him in the face.  Such a silly kid.  Austin is only asleep a few minutes while they do his lumbar puncture and give him his chemotherapy in his spine.  Then it takes him about 30 minutes to wake up, drink some juice and eat a snack.  

Best Pizza Place in Salt Lake

  We always let Austin pick where he want to eat after we are all done and this time he wanted pizza.  We went to The Pie near the U of U--the best pizza in our opinion.  

Austin, really excited about posing for the picture

Austin decided he wasn't interested in pizza, but the desert was awesome

 We packed up and headed back to St George ready for another week of good counts, school, work, and hopefully no excitement.

6MP

This week Austin is starting Consolidation and part of this phase is taking Mercaptopurine or 6MP as they nickname it.  It is a medication that works by stopping the growth of cancer cells.  Austin is supposed to take it on an the same time every day on an empty stomach without milk or citrus products for better absorption.  Easy right?  Yeah right.  This means Austin has to take it right before bed at least an hour after eating anything else.  He likes drinking milk to take his pills so he is trying to get used to drinking water instead.  A major side effect of this medication is nausea.  Two mornings in a row Austin woke up nauseous and reluctant to get out of bed.  Finally his brilliant mom decided to try giving him Zofran at bedtime with the 6MP, and Ta Da!  Nausea gone.  Wish I'd thought of that sooner!  Zofran is a miracle drug as far as I'm concerned.  Austin will be on this medication for most of his 3 year treatment so hopefully he will get used to it and have less nausea.

"This medicine may lower your ability to fight off infections. 

 Avoid contact with people who have contagious diseases."

  Ha!!!  Biggest "duh!" of the year!

Starting Consolidation

Austin and I made the 5 hour trip once again to Primary's Children Medical Center in Salt Lake to start the second phase of Austin's treatment, Consolidation.  His blood counts were good so we were given the ok to start.  We went first to the Oncology clinic and met with the crowd of people that contribute to Austin's treatment.  Today it was a Nurse Practitioner, Registered Nurse, Fellow, Attending, Child Life Specialist, Anesthesiologists, Radiology Tech, Radiologist, Nurses Aid, and Pharmacist.  Yes we met with all these people in the span of 3 hours.  It becomes so overwhelming to keep track of what everyone is telling us.  Thank goodness for name tags or I would never figure out who is who.  

Getting checked by the Nurse Practitioner

The last couple of days Austin has been saying that his leg hurts.  It seems to be progressively worse and today he didn't want to walk on it at all.  From what I can tell the pain is muscle cramping like a charley horse and extremely painful.  We told the Nurse Practitioner about this pain and her concern was that it could be a blood clot.  She measured his legs and the one with pain measured slightly larger than the other. 

 So off we went to Ultrasound to check for a blood clot.  Austin got a kick out of the "goo" that was slathered all over his leg by the Ultrasound Tech.  The Radiologist came in and looked at the pictures and thankfully no clot was seen.  The conclusion was that it was a muscle cramp, though why it is only in one leg is a mystery.

Getting an Ultrasound to check for a blood clot

Then we were sent to the Rapid Treatment Unit or RTU for Austin's Lumbar Puncture and Chemo.  The Child Life Specialist brought in an Ipad for Austin to pass the time.  While we were waiting for his Chemo dose to arrive, Austin played "fruit ninja" while the Anesthesiologists cheered him on.  

Tired after his treatment

Austin got his Lumbar Puncture and Chemotherapy and we headed back to Orem to Grandma's house. He was wiped out and didn't feel well the rest of the day, something that we are finding is the trend after the sedation and Chemo.  He had a low grade fever that gave me a scare for a couple hours, but it settled down and we were able to return to St George.  His leg continues to bother him and I hope it will get better soon.