Thursday, February 21, 2013

A Photo shoot

I talked Austin into a little photo shoot so I could document his sweet bald head before his hair grows back.  He gave me exactly 5 minutes.  He is so adorable, his smile just lights up the room.

Friday, February 15, 2013

Getting Some Blood

After Friday's low Hematocrit, it was no surprise that Austin needed some blood.  He was tired all the time and was so pale.  We made a library trip so Austin could get a good book to pass the time as he waited for the blood to infuse.

Getting blood and reading Calvin and Hobbes

Always with a smile

 It was amazing to see how quickly Austin felt better after the blood.  He perked up and had energy and his adorable cheeks were pink again.  He was able to go back to school in time for Valentines Day. 

Valentines cookies from Grandma Golden

Austin now has a week off from Chemo.  We finished the Ara-C and Thioguanine without too many problems.  He had a blood vessel in his eye rupture and his eye looks bad but it doesn't hurt.  It may be a sign of low platelets so we will monitor him for that.  

Saturday, February 9, 2013

Ara-C and Thioguanine

Thioguanine--a medication that interferes with the growth of cancer cells.  Austin is supposed to take it for 2 weeks.   We go to the pharmacy, give the pharmacist the prescription, and give Austin the pills.  Sounds simple enough right? If only it was that easy.  We took the script to the pharmacy at Primary's only to be told they didn't have it in stock.  No problem they say, just take it to another pharmacy.  So on the way back to Grandma's house we stopped at a Walgreens and dropped off the script.  2 hours later we went back to get the pills only to be told again that they didn't have them in stock.  So we (Kevin and I)  got on the phone and called every pharmacy in northern Utah.  The only pharmacy that said they had the pills was in Bountiful, an hour and a half North of where we were.  The others all said they could order the pills but would not get them in for a few days.  So I called the on-call Oncologist at Primary's to see if we could delay giving the pills to Austin.  She says no, we must start them immediately.  So at about 8pm Kevin drove to Bountiful, waited in line for over an hour (because apparently that pharmacy is the only one in the state that has meds?), then drove back to Orem.  I had to wake up poor Austin to take the first of these magical, fancy pills.  Oh and bonus!  Kevin had to pay $243 for 23 pills...awesome.


Austin loves legos--thanks Grandma for the spaceship!

Thioguanine--my nemisis

To add insult to injury, when we got home from Salt Lake I went to give Austin his Thioguanine and noticed that there didn't seem to be enough pills left for the number of days needed.  When I looked at the directions on the bottle they did not match the directions I was given in the clinic.  So another call to the clinic this time to confirm that I wasn't going batty and that the pharmacist had indeed misread the script and shorted us 4 pills.  4 lousy pills.  Thankfully I discovered the shortage in time to get another prescription and get it to Walgreens in time for them to order the 4 pills.

All the gear needed for home Chemotherapy

Chemo in the mail

Too busy reading to get his blood pressure taken

Waiting for the doctor

With Dr. Marsden

Austin and a family friend--sporting the same hair do!

Besides all the Thioguanine drama, Austin is also getting Ara-C this week.  Ara-C is short for Cytaranine, a chemotherapy drug that kills cancer cells by interfering with DNA synthesis.  He gets it IV push in his port.  Thankfully I can give him this med at home.  Unfortunately, because it is a toxic drug, I have to use gowns and gloves to protect myself and dispose of everything properly.  Seems like much to do about nothing, but it's just one more hoop to jump through.  Austin hates leaving his port accessed, but it's better than poking him every day.

Home Chemo

Sleeping with Hershey

Wiped out
Austin felt pretty good most of the week.  He was able to go to school 4 out of 5 days.  We saw Dr. Marsden again and everything looked good (good meaning no unexpected bad things...all the expected bad things just have to be dealt with).  Austin has had increasing nausea and vomiting and we have been accessing the nausea arsenal to try to keep it under control.  He is also more pale and tires easily.  His Hematocrit this week was 25 so he may need a blood transfusion in the next couple of days.    Again, not unexpected.  Low blood counts are very common in this phase.  Austin's ANC was 800 and Platelets were 193.  

Friday, February 1, 2013

Starting the 2nd Part of Delayed Intensification

Austin enjoyed his week off from Chemo and school.  But all good things must end, so once again the Home Health nurse came to access Austin's port and draw blood.  We expected Austin's counts to come up and sure enough, his ANC was 1600.  So we packed up the kids and dogs and made the trip back up to Salt Lake. 
Getting his port accessed

Waiting for the nurse to come--all smiles
We had left Austin's port accessed from the day before to save Austin a poke.  Unfortunately, when the nurse tried to draw back blood the needle was found to be out of place.  So Austin had to put up with another needle poke to re-access his port.  
Getting his port accessed again--
Cleaning his port site--he hates this part
Finally drawing his labs
This time around the RTU where we normally have Austin's LP done was full, so they decided to try "conscious" sedation on Austin.  Dr. Eldridge came in to assess Austin and place some numbing cream on Austin's back.  Austin is so ticklish and made everyone giggle with him.

Dr. Eldridge laughing as she checks Austin's back

Austin is so ticklish!  Dr. Eldridge is checking
Austin's back for  his LP.

Getting checked out by Dr. Eldridge
We then moved over to the sedation room and Austin was hooked up to a monitor to watch his vital signs during the procedure.  He was given Ketamine and Versed for sedation.  Kevin and I were able to stay in the room this time.  It was over quickly and Austin began to wake up.
Waiting to get his LP.  Hooked up to so many things!
Getting his LP
Dr. Wright checking Austin after his LP
Still sleepy, this is a goofy kid
They warned us that Austin would be very loopy and dizzy for awhile.  The first thing he said to me when he opened his eyes was that I had two heads.  Of course we had to record his silliness.

We moved back over to the Clinic and Austin received a fluid bolus and his Chemotherapy.  This particular drug (Cytoxan), is very hard on the kidneys so the extra fluid is to help wash it out of his body.  Austin passed the time by playing xbox with Kevin.

Getting a bolus of fluid--at 999 ml/hr.  Super fast!
Passing the time getting chemo by playing xbox games with Dad
So that was day 1 of the 2nd part of Delayed Intensification.  This phase is 30 days long.  Austin will be given 3 new chemo drugs.  The Cytoxan was today, Ara-C is given IV for 4 days then off 3 days then given 4 more days.  Thioguanine is an oral chemo drug that Austin will get daily for 2 weeks.  All three of these are intense chemo drugs that will cause lots of fun side effects.  It's likely that Austin's counts will drop again in the next couple weeks.  But it's one step closer to maintenance so we will do our best to get through it.