I really want to thank my sister Brittany for starting this blog.  It first started out as a way to update all my family on Skyler's condition because I was just too much of an emotional wreck to talk to people.  I really didnt think that anyone would even read it, but now I am overwhelmed with the love and support I have been shown through this.  Reading all your comments just makes it that much easier to cope.  It has turned into an outlet for me to express my thoughts and emotions and well as update everyone on Skyler's progress.  At first it was hard for me to write everything down because it was so personal and so heartbreaking to put into words.  Sharing the graphic pictures of how Skyler looked at his lowest point was also hard.  I never wanted to remember my son looking that way and let alone show the world, but I wanted to share Skyler's story.  The good, the bad, and the ugly.  I wanted people to know what cancer does and what it looks like.  Its not just a bald head. 
I want to thank everyone so much for reading this and for supporting us.  I feel so blessed and am humbled by all the love, prayers, and generosity shown our way.  Thank you, thank you, thank you!!                                       
 Here is a link to a video of Skyler walking.  Im so proud of him!
               http://www.youtube.com/watch?v=mv4nkhVlHSk

A look at Skyler's cancer journey so far.  Truly a fight for his life!

Every year Bountiful has a Triathlon.  This year the Bounitful Triathlon is going to give a donation in Skyler's behalf in exchange for volunteers at the event.  You do things from setting up bike racks, helping direct at intersections, to handing out water, or helping clean up etc.  Some people would help Friday evening from 6-10, others would help Saturday from 6-12 or any split shift 6-9, 9-12.  Or if you want to actually race in the event then a portion of your registration goes to Skyler directly.

The event is August 6th.  I know this seems really far away but I wanted to let everyone know now so we can get the word out.  We need 40 volunteers.  If you are interested you can leave a comment on here with your information or email me at crystaln_isaacson@yahoo.com and we will contact you with the information you need.  I am so excited for this, especially because it will almost be Skyler's one year mark since diagnosis (he was diagnosed Aug 17th) and what better way to celebrate it! 

The link to the website is http://www.bountifultriathlon.com/   I want to make this event really successful, so the more the merrier.  Thank you!

Clinic today went alot smoother than I anticipated.   I went in expecting a blood transfusion, maybe a platelet transfusion, a couple different chemos, a lumbar puncture and a bone marrow aspirate.  Even just getting a platelet transfusion keeps us there for a least 2 to 4 hours, so getting all of this extra stuff I expected to be there for a lot longer.  We found out, however, that his blood count had gone up so he didnt need a blood transfusion.  We also found out that his platelet count was a whopping 614!!   I almost peed my pants when he told me. (haha ya I just said that)  Im used to seeing 6 on the paper, not 614.  Its a little higher than normal (normal is 400) but his white count had come up a little too so the doctor was saying its probably just his bone marrow responding to one of the chemo drugs he got a couple of weeks ago.  It will be interesting to see what it does when we go next.  His bili stayed the same from having the Vincristine last week, but a couple of his other liver numbers went up a little.  Its not too bad so we arent that worried.  Our plan is to try and get him on the regular road map, so he should be taking Vincristine and Methotrexate together now.  We decided to hold off on the Vincristine this week and give him a dose of Methotrexate to see how this effects his liver.  If he does ok on this then next week they will give them both together.  We are just being extra cautious giving him these new drugs because he reacted to badly to them before.  Also the Oncologist was saying that sometimes if you have a certain make up with different chromosomes than you are predisposed to not tolerating high dose chemo.  Im not sure how to explain it because it was really complicated when he told me, but they are going to test him for it.  The test takes a couple of weeks to get back because they have to send it to Cincinnati because its not common to test kids for this.  If it does come back positive then he wont even consider one of the drugs.  So Im praying that it comes back negative so he can get the drugs he needs.

Instead of doing a bone marrow aspirate today they just did a lumbar puncture to put chemo into his spine.  It went amazingly well.  It literally only took a couple of minutes and Skyler did great waking up.  The first thing he said to the nurse when he woke up was "I did so good last time"  It was funny.  He also didnt want the blow by oxygen by him and said "Do I really have to have that stuff?"  She laughed and took it off.  I was so proud of him because he was really scared but did so good.  He was back to his normal happy self within no time.  We then went back up for the Methotrexate and then we were ready to go home.  We were there for a total of 4 hours.  I was expecting a lot longer so I was happy. We arent scheduled to go back in until next Thursday.  Thats the longest we have gone without going to the hospital.  Im so happy things are going
better for him, he definitely deserves a little break.

                                  Beware: Picture overload

                                 Getting ready to go to clinic

Just being cool

He was able to stand on the scale for the first time today.  Usually I have to hold him.  Go Super Skyler!

Also the first time standing for his height.  Usually they get a height from him laying down.

Im so grateful my mom was able to come today.  She kept Skyler really happy.

He made his own "clinic bag" to bring every week.  Pretty fancy huh?

Waiting to go back for his LP.  Thumbs up dude!

Mommy doesnt like seeing him get the sleepy medicine

Falling asleep on mommy after the sleepy medicine

Leaving him there by himself is always the hardest part for me.

In lala land

Just waking up.  He was a little sleepy but did great!

Our amazing Oncologist showing me that his platelet count was so high.  I thought he was joking at first so he showed me the paper.

Eating some yummy chips.  I was so surprised that he wanted to eat because its still a struggle to get him to eat anything at all.

Getting everything ready so we could leave.  This was the respiratory therapist we had in the PICU so it was nice seeing her under better circumstances.

And last but not least, a lovely dose of poison

Thank you so much for all the many prayers on Skyler's behalf.  I am overwhelmed with gratitude at all of the love and support we have been shown.  Thank you from the bottom of my heart.

I learned a very valuable lesson the other day....dont leave your child who is just barely learning how to walk again and take a picture. 

Skyler got up and wanted to walk down the hall into his room.  Look at him walking all by himself (well with the walker of course)



He was walking so well that I thought I would be ok leaving him and taking a picture of this awesome moment, bad idea because he got a little nervous right after I took this and he fell down.

This was the end result from the fall....his feeding tube got ripped out!  It was Saturday night so the x-ray room where they place the NJs was closed so we had to wait until the morning to place a new one.  This meant no feeds through the night (the longest he has gone without them) and....

He had to take all of his meds my mouth instead of through his NJ.  He has a ton of meds he has to take and I didnt get any of them flavored because they usually go right into his intestines.  As you can see he wasnt a fan.

He was so brave though and took them anyway even though I know they tasted nasty.  Poor kiddo.

But look how cute he is without that tube taped to his face.  He was actually loving not having that in his nose.  He kept rubbing his cheek telling me it felt really weird because he was used to feeling the tape and tube.

The next morning we got up early and headed to the hospital.  He was so nervous and scared because he absolutely hates getting that tube put into his nose.  He has to swallow it and he can feel it go all the way down.  Here he is waiting to go back and get his new tube.  I was going to take a picture of them putting it in, but he needed mommy to hold his hands.  Even though he was terrified he was so brave and did it.  Way to go bugs!

Yesterday we had a couple of firsts for Skyler.  His platelets went up by themselves for the first time!  On Monday they were 227, yesterday they were 267.  I was definitely prepared for him to get a transfusion so seeing that they had gone up by themselves was shocking.  Im so happy right now.  I honestly didnt see this coming, I for sure thought he would be getting platelets every other day for a long time.  Another first for Skyler yesterday was that he walked!  He walked all the way across the room and back with his walker.  I almost started crying I was so happy.  I didnt want him to think I was sad that he was walking though so I held back the tears.  I wish you all could have seen the look on his face.  He was so determined and so proud of himself.  You could tell that it was hurting his little legs but he was determined to walk so he did.  Wow, yesterday was a good day.  I am one very proud mamma right now.  He has just come so far, its truly a miracle.
One Tuesday he is scheduled for a lumbar puncture to put chemo into his spine, and also a bone marrow aspirate to check for cancer cells in his marrow.  His blood count was a little on the low side yesterday so they will also be giving him a blood transfusion.  This will be the first time that he gets to go home right after his LP so it will be interesting to see how it goes.  Also his bili has stayed the same at .7 so all is well with this new chemo for now.  They will check again on Tuesday to see if it is still good and if so then they will give him another dose and also maybe add another one.  Tuesday will be a big and exhausting day.


Here is a picture of my must haves since being home.  I would go crazy without them.  Clorox wipes, a diet  coke, and a thermometer

And here is a picture of Skyler's must haves.  A game, movie, DS, and his barf bucket.

Also, look at all that hair coming in!  It started coming in last week and it has been growing like crazy

Here are some pictures of my little cutie.  They were taken by allenjamesphotography

Thank you Sherrae!