The End Of Interim Maintenance 1

Austin had a really rough week after the last round of Chemo.  He had nausea and vomiting for three days and was miserable.  The Oncologist wanted him to get a fluid bolus and some IV Ativan, but when the Home Health Nurse came to access his port, she poked twice and couldn't get the needle in the right place. The second poke was so painful that Austin refused to let her try a third time.  I agreed to let him go 24 more hours and if he wasn't improved we would try again.  The next morning Austin jumped out of bed and proclaimed he was totally fine and ready to go to school.  I know he was pretending to feel fine just to avoid being poked again, but after making him promise to call me if he threw up at school, I agreed to let him go.  He managed to keep enough fluid down that finally he began to feel better.

It was a very frustrating few days so I talked to the nurse at the Oncology Clinic in Salt Lake to see what we could do to prevent the extreme nausea and vomiting this time around.  So game plan in hand, we were ready to complete the last round of chemo in Interim Maintenance 1.  Austin was really anxious and worried about having his port accessed.  Thankfully, this time the nurse got the needle in the right place with just one poke.  His labs were drawn and sent.  His ANC was 1800 so we were given the go ahead for chemo.

Enjoying a smoothy

Chocolate chip pancakes before Chemo, not too shabby

 Austin and I celebrated the successful morning by going out to lunch.  Austin chose chocolate chip pancakes and was very excited when they showed up, each one bigger than his head.  Of course he couldn't even finish one of them, but they were yummy!

Smiling through the mask

 We headed over to Austin's Pediatrician's office to get his usual checkup.  He was 43.1 kilos this week, down another kilo.  I can tell he is feeling better since he has lost most of the steroid weight.  The visit went well and we then headed to the Peds floor for chemo.

Playing with the stethoscope, I instructed him to let me know if he heard my heart stop.

Getting assessed by nurse Justin

Since Austin's port was still accessed, getting the chemo was a breeze.  He got a new anti-nausea medication, called Kytril, that hopefully will help avoid the misery of throwing up for days.  The plan is to leave Austin's port accessed so I can administer his medications.  I will give him him a fluid bolus for one or two days depending on how he is feeling, as well as the Kytril, Ativan, Zofran, and Benadryl if he needs it.  It's a lot to keep track of and I am again grateful for my nursing background that gives me the basic knowledge of all of this.  I feel for those parents that are thrown into this cancer world without any preparation.  I suppose they just learn quickly.   I just hope all this nonsense helps and Austin feels better this time around.

Our arsenal--the balls are full of Normal Saline that infuse over 2 hours.  

Feeling crappy and getting a bolus

 So we are done with Interim Maintenance 1.  Wahoo!  One more phase down and one step closer to being done. We now get a 2 week break before starting Delayed Intensification on the 28th.  Conveniently, this break falls over Christmas so we are very excited to enjoy the holiday without worrying about Chemo.  

We get an ornament every year that reflects the year we have had.  This was an obvious choice for 2012

To Salt Lake...again

We got through Thanksgiving.  Austin was miserable after his chemo on Wednesday.  He had nausea and vomiting as well as back and joint pain for two days.  I had to work on Thanksgiving day but Kevin cooked a wonderful meal and we celebrated as best as we could.  Austin also got his first mouth sore this week which I know is inevitable, but still hard to see.  His ANC this week was surprisingly awesome, above 3000 so we headed back up to Primary Children's for another lumbar puncture.  The visit went well and Austin received the Methotrexate in his spine as well as the Methotrexate and Vincristine in his port.  I discussed Austin's vomiting issues with the Oncologist and she increased the dose of Zofran in the hopes that things will be better this time around.

43.3 Kilos this week--down a bit.  He has been steadily losing
since the huge weight gain from the steroids in September.

Dang that blood pressure cuff

Playing around waiting for the doctor.  Lots of energy this week.

Getting labs drawn

With Tricia--she coordinates our treatment in St George.  We love her!

We got a visit from Elliot the therapy dog.  He is always a big hit.

With Dr. Eldridge--she is the doctor that we see most of the time.

Waking up after being sedated for his lumbar puncture.
 Austin says he loves the "sleepy medicine".

Getting Chemo in his port

Playing around with the wheelchair

On the way home--Austin picked out this hat from the Clinic's hat tree

I am glad Austin is doing well.  I have had an emotional week.  His cub scout leader called and asked if he could call us up in pack meeting and have me talk about Leukemia and what Austin is dealing with and then they wanted to give Austin a "cheer"(the cub scouts have silly cheers that they give the boys when they get their awards).  I struggle with this kind of thing because I know these people mean well but I don't want Austin labeled as "that kid with cancer" and treated differently than others.  And a cheer?  Really?  How about: "ra ra ra, Cancer sucks!"  Ok, I was over reacting.  I decided to let Austin decide if we should do it and of course he said yes.  I was uncomfortable but Austin soaked up the attention and it turned out fine.  Kevin handed out the orange team Austin wristbands to the scouts and I gritted my teeth through the cheer.  

We went to our Ward Christmas party tonight and as I sat there in the middle of all those people, I realized that I couldn't relate to any of them.  When any of them would talk to us it was to ask how Austin is doing followed by an awkward moment when they don't know what else to say.  I know they are just being polite.  I know they can't understand how I can't sleep at night because I torture myself with worst case scenarios or that I cry with Austin every time he throws up and he says "Mom, I hate cancer".   I feel horrible that he has to be poked over and over.  I hate watching the poisonous Chemotherapy drips into his veins in the hopes that it will save his life.  So when someone says, "how are you?"  What can I say?  I settle for, "we are hanging in there", or "doing ok".  I know it's not true, and they know it's not true, but neither of us knows what else to say.  I know I am evil, but if one more person says to me, "you are in our thoughts and prayers"...I just might scream.

Ok, that's my rant for the night.  I almost deleted all that, but then I decided that in some crazy way it is therapeutic for me to express the negative thoughts.  I truly am grateful for all the people that care about us and want to help.  I really am grateful for all the thoughts and prayers.   I guess I need to learn a lot more about humility.  

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.

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

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

Ouch!

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.