Home!!

We were finally heading home after 11 days in the Salt lake area.  It's a 4-5 hour drive depending on how many potty stops we have to make, but it feels like it gets longer every time we drive it.  We are looking forward to two weeks together as a family before we have to head back to Primary's on Sept 28th for more treatments.  I knew we left our house in a disaster because we were in such a hurry to leave.  We just threw things in bags and rushed out the door.  I was not looking forward to having to clean the house but I knew it would be important for Austin to have a clean environment that wouldn't make him sick.  Imagine our surprise when we arrived and found the house sparkling clean and Austin's room completely redone including a new full size bed, bedding, and bookshelves.  

Austin's new room

Many of our St George friends generously donated time and money to make this happen.  Kevin and I shed a lot of tears of thankfulness as we walked around the house and found surprise after surprise.  I didn't have to worry about running to the grocery store for dinner because the refrigerator and freezers were stocked with more than enough food for the week.  Kevin didn't have to worry about the yard because the lawns were mowed and weeds pulled.  They even cleaned the garage and the car that we left in the driveway.  How do we express in words how grateful we are for this love and generosity?  I don't think anything I say would be adequate.  It's not just the material things, though we are grateful for those, but that these friends cared enough to spend their time and money to make sure Austin is comfortable and that we don't have to worry about anything, but could relax and spend time together as a family.  

Austin found this fortune in his fortune cookie last week.
 It could not have come true at a better time!

So for lack of anything else to say, I will just say thank you.  Thanks to Emily and Adam for being the masterminds and organizers of the whole thing, thanks to those that cleaned, those that gave money, those that shopped, and those that did anything else to make it happen.  We don't have blood family in St George, but you all are our family and we wouldn't be able to survive without you!  

Oncology Clinic

Today was our first official visit to the Oncology Clinic at Primary's.  I admit it was hard to walk back in those doors after only being gone a couple of days.  Austin didn't understand why he had to go back and didn't love the waiting and waiting that comes with the territory.  He was weighed and measured, vital signs taken, labs drawn, and Chemo given.  

Can you tell he just loves having his blood pressure taken?

Getting Chemotherapy

Because Austin had to be sedated for his lumbar puncture, he wasn't allowed to eat anything after midnight.  The procedure was scheduled for 12:15.  We were told that the steroids that Austin is taking will make him moody and hungry all the time, but we were shocked at the hungry monster that came out as we were waiting for them to call his name.  He started out as just grumpy but by 2:00 he was in full blown meltdown mode.  He even made Kevin and I promise that we wouldn't go get lunch without him while he was asleep.  For some reason he got it in his head that he wanted Wendy's chicken nuggets and nothing else.  Even right after his procedure he refused cookies and other snacks and insisted on going to Wendy's.  Kevin and I tried to be serious and not laugh, but it was kind of funny.  Hey, sometimes you have to laugh at the small things to avoid crying at everything!  He got his chicken and the smile came back.

Sipping a slushy after his Lumbar Puncture

It's ok Austin, we understand and we forgive you!  

The best news that came out of our visit was that his labs looked good so we were given the ok to return to St. George for 2 weeks.  We are so excited to get to sleep in our own beds and try to return to a normal routine for a while.

Germ Warfare

Today was Austin's day to chill out and enjoy not being bugged every 5 minutes by someone coming to assess him, take his vital signs, or ask him how he feels.  At least it would have been his day to do this if only his anxious mommy could relax and leave him alone.  I feel like a can see the germs inching their way towards my boy, laughing their devilish laugh as they prepare to invade his body and make him sick.  So yes, I admit to some annoying habits like saying:"wash your hands!"for the thousandth time, feeling his head over and over in case he has a fever, and obsessively sanitizing everything in sight.  It's amazing how much you take for granted when you are running around with a normal immune system.  I watched Jaxon run from toy to toy, putting all kinds of things in his mouth and was amazed that he isn't sick all the time.  Our bodies fight off thousands of germs every day and we don't even blink, yet any of those could make Austin really sick.  Will I ever be able to relax again?  Sigh...ok I'm off to bleach something. 

Austin's Pharmacy

Giving Austin his antibiotics through his port

Discharged!!

After 6 days on the Oncology floor at Primary Children's Hospital, we FINALLY got discharged.  Austin was fever free for more than 24 hours so he was deemed well enough to leave.  We have to stay nearby as we have to come back to the Cancer clinic on Friday for more chemo and another LP, but it was so nice to be able to walk out into the sunshine.  We are staying at my mom's house for a few days and Austin is enjoying being spoiled by Grandma.  He made me promise that as soon as we got  to Grandma's he could have some of her waffles because her waffles are the best in the whole world.  Grandma was more than happy to oblige, as were the Eggo waffles in her freezer.  Sometimes the simple things are the best.

We're out of here!!

Grandma's here we come!

Grandma's waffles are the best!

Visiting With Friends

Austin and His Best Friend, Kayden

Austin with Kayden and Owen

 Monday morning Austin received a visit from some special friends.  They drove all the way from St George to visit and take Madison home to stay with them for the week so she can go to school.  That is a big sacrifice for them to drive all this way and we appreciate it more than we can say.  Without good friends this journey would be unbearable.  Austin also received a special package from his 3rd grade class, including a big card that all his classmates signed.  That put a smile on Austin's face.

Austin and his Nurse, Irish.  Irish knew just how to make Austin laugh.
  It helped that he had a fart machine in his pocket.

Austin's with Dr. Barnette and Dr. Eldridge

Austin with the card his 3rd grade class made him

Austin with the card that Kayden made him

We were told Austin would have to spend at least one more day in the hospital to make sure his fever doesn't come back.  This is just fine with us because we are more than a little nervous to take him home.  I just want to make sure we aren't going to be back in the Emergency Room a few hours after we leave the hospital.  

Chubby feeling some empathy for Austin

With Nurse Becky, one of our favorite nurses

Making Dad try out the mask--he wore it through the hall just like Austin

A Day of Rest

 Austin woke up Sunday morning in a great mood.  We played Crazy 8's while we waited for his breakfast to come.  We walked down to the playroom and Austin beat us at a few video games.  He even felt well enough to go outside for some lunch.  We found a quiet table in the shade and had a very peaceful time.  He was able to enjoy a few minutes without his mask on.  He asked about his "sick blood"  and we tried to explain in terms he could understand.  I said Leukemia is a like a big bully that is taking over the blood and telling everyone what to do.  It forces the warriors (the white blood cells) to be something they are not supposed to be so they can't do their real job of protecting the body from the invasion of germs.  So without the warriors, you get sick.  Chemotherapy is going to kill the bullies and then let the body grow more warriors.  Very simplistic but good imagery for an 8 year old.  

Playing Video Games With Dad

I wish I could tell you that the day ended as well as it started.  We came back to Austin's room to rest after playing in the playroom with his cousin, Lydia.  Austin took a really good nap but once again, just as yesterday, he woke up with a raging fever.  This time it was 103.8.  Just as yesterday blood cultures were drawn and antibiotics were given.  The blood culture from yesterday was negative for any bacteria so we don't have an explanation for the fevers.  They treat them as if there is an infection present even though much of the time the fever is caused by his low neutrophil count.  Austin continues to have pain in his jaw and ears, a result of the Leukemia causing sore joints.  He was given tylenol but it didn't help this time.  Austin also said he was nauseous so he was given Zofran through his IV.  Ultimately he continued to be in pain so a one time dose of Morphine was given IV and this helped the most.  It is so frustrating to have this keep happening and it makes me very nervous to go home.  Are we going to be rushing to the ER all the time with a fever?  How do I manage this pain that comes and goes?  Frankly, I am scared to death.  I feel like my child is a ticking bomb that could explode at any moment and I won't know how to cope.  All these thoughts and I have a basic medical knowledge.  My heart goes out to those that are completely starting from scratch when it comes to learning all this stuff.  It is already overwhelming!

Austin with his nurse, Jared.   Getting some pain medication

As I type this, my sweet boy has finally succumbed to sleep.  He seems comfortable now and I am grateful for that.  I can't help but think about the next month, the next 3 years with dread.  There are moments that I don't think I can do it, that I can't manage all this.  When I think of the traveling back and forth from St George to Primary's, the missed school and work, the bills getting bigger and bigger, trying to be a mom to 2 other wonderful kids that deserve everything a mom can give them too, frequent ER and doctors visits, etc, etc, etc,  and above all else-- seeing my child suffer--how do I do it all?  I don't confess these thoughts with the desire to complain or to solicit help from anyone, I just am sitting here having a bit of a pity party, wishing that when I wake up in the morning I will have never heard the word cancer, at least in connection to my child.  Somehow I know I will find the strength to move forward, to take it one day at a time.  To accept help when it is offered and give it when it is needed.  As so many other mom's have done with their own sick kids, I will simply, survive.  Deep down I know that I have been given this trial to learn something-- to be a better mom, to be a better friend or neighbor or nurse.  I don't pretend to understand why things happen the way they do or why good, sweet, innocent children have to suffer; but I think-- I hope that when all this is said and done, when my boy is cured of this awful disease, we will look back and see how far we have come and understand that somehow, it was for our good.  

As tough as Superman!

A tough day

Cammie-one of Austin's great nurses.  She is once again, checking vitals.

Today was probably our toughest day yet.  Austin's blood pressure was elevated and his heart rate was low--in the 40's and 50's.  This could be a reaction to the medicine he has been given or his heart could be trying to catch up after the blood transfusion was given yesterday.  Either way, Austin had to be monitored with telemetry--this monitors his heart rate, respiratory rate, and oxygen saturations.  He was given an EKG which showed some changes in the way his heart was working.  After several hours of watching him close, it was decided that he didn't need any intervention and that we could just continue to watch him.  The excitement started at 5 am so Austin didn't get much sleep. After being poked and prodded and just bugged constantly, Austin was done with everyone.  He has been so patient and put up with so much so I think he was entitled to a meltdown.  FINALLY he was able to take a short nap. I really hate that all this is happening and he can't understand why or understand that everything everyone is doing is to help him.  All he sees is an endless parade of people that keep asking him questions, taking his vital signs over and over (he hates the blood pressure cuff), and wanting him to do things he doesn't want to do (like his mom asking him over and over if he wants to eat or drink) 

Taking a much needed nap with Chubby the Bear

Drawing blood cultures.  The nurse and Austin have to wear masks to prevent a line infection.

Unfortunately, when Austin woke up from his nap and I helped him to the bathroom, I noticed that he felt hot.  His temperature was 103.5.  So back came the circus with blood cultures, frequent vital signs, and IV antibiotics.  The doctor came and assessed him but couldn't find an obvious reason for the fever.    Austin was given tylenol but continued to feel crappy (duh!  I would too with such a high fever!).  He complained that his jaw hurt and his port site was bothering him.  They gave him some oxycodone for pain and FINALLY he was able to relax and feel better.  After such a long day I thought Austin would be exhausted and go right to sleep but when he finally felt better, he was ready to play.  If you have ever talked to Austin, you know he is very intelligent and loves to learn.  Oh, and he likes to talk!  I sat on his bed at 11:00 at night and we talked about spiders and how they make webs, the intestines and how you make poop, the planets and how venus is so hot, and about his teachers and school.  What we didn't talk about was Leukemia.  I specifically avoided talking about his illness or what was going on around him.  Just for a moment I wanted him to be a normal boy, just curious about poop.  :)  He went to sleep with a smile, and I lay on my chair-turned-bed, and thanked my Heavenly Father for such a special little boy and for the opportunity to be his Mommy.