Today has been a busy and fun day.  First we had our home health nurse come draw labs to see if Skyler made counts to start his first maintenance appointment, and all of his counts are great!  I was expecting them to be good because of how well he looks and how happy he is.  His ANC is 3.4 which is great.  His platelets are 218, a big jump from 36 last week.  His hematocrit was a whopping 38!  He did get a unit of blood last week but this is the highest I can ever remember it being.  He will go to clinic on Monday to officially start maintenance.  He will get a back poke to put chemo in his spine, he will get vincristine and he will also start back up on his chemo 6MP that he will take at home everyday along with a Methotrexate pill he will take once a week.

We also had a very special visitor today.  Daphne one of Skylers cancer buddies came and gave Skyler a present and also played.  Skyler loves Daphne!  She is one of the sweetest girls and he always talks about his cancer friend Daphne.  He was so excited that she was coming to our house and was even more excited that she stayed and played.  It was really good to sit and talk with her mom too.  She is amazing and its always nice to be able to talk to someone who "gets it" and knows what Im talking about without having to explain what things mean.  You learn so much cancer lingo that sometimes I forget that people have no idea what Im talking about when I talk about his ANC or crit. 

Next we had Skylers physical therapist come and work with him a little.  He is still so stiff in his feet and weak that he compensates in his walking and still walks different.  He has been eating better and I think has gained a couple pounds so that will help with his walking as he gets stronger but I also really need to work hard on stretching his feet and legs.  Its hard to do it for too long though because it still causes him alot of pain.  His endurance is getting better though which is really good.  He can walk farther now without tiring as fast.

We also had some people over to interview me and Skyler who are working on a cancer documentary.  I was expecting the guy to bring a notepad to jot down notes or something but he showed up with actual camera equipment and filmed me. (I guess I probably should have dressed up more)  I get super nervous with this stuff and am not the best at talking on the spot, but they were really nice and the documentary is going to be great so that made it easier.  It was fun being able to talk with them and get their take on the cancer world.  Im grateful that they were so nice in listening about our cancer journey so far.

Even though this break hasnt been what I had imagined due to needing a unit of blood and having to hook him up to his Meropenem throughout the day and night, we still have been able to get out and do some fun things that he has been wanting to do.  Its been so nice having him feel good and to be able to say yes to more things.  He is also so happy all the time now and has been so cute.  Its been wonderful!!


Our first big outing was to the movie theater to see SpyKids.  Skyler loves going to movies and loves SpyKids.  He says when he grows up he wants to be one of the guys that makes video games but on Tuesdays and Thursdays he wants to be a spy.  I took him during the day when all the kids were in school and lucky for us we were the only ones in the theater.  He got a big bucket of popcorn and licorice and really enjoyed the movie.  This movie was in 4D meaning it had smells.  He had a card full of numbers and when a number flashed on the screen he would scratch it and sniff it and it would smell like the thing on the screen.  He thought it was awesome!  My favorite part about the movie was the main boy spy kid had hearing aids and they were blue just like Skyler picked out.  It was just the right timing to see this because Skyler should be getting his within the next couple of weeks.

We also went to the Aquarium.  He loved it because he loves fish.  Here he is with a small shark behind him

This was my favorite part...the penguins!  Skyler thought they were so cute and funny and kept laughing at them

Another favorite part of mine was watching him wave to all the fishies.  So cute!

I was even brave enough to take him out to eat.  Even though I was secretly having a panic attack I took him into eat at The Pizza Factory.  It wasnt really busy which made it a little easier for me.  He loved the giant bread sticks they have there.

We went mini golfing again too.  Grandpa and Ty came too and he had so much fun.  For Skylers sake we reversed it and whoever gets the most points wins.  Guess who won?  Skyler!

Today we went with my dad to the Hill Aerospace Museum to look at all the big jets.  Notice that he isnt wearing a mask inside!  Im getting braver and braver and it feels good to be somewhat normal again. 

I just love this kiddo!!

This was our favorite plane.  It was huge!

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

On August 17th 2010 Skyler was diagnosed with Acute Lymphoblastic Leukemia.  When Skyler is finally done with treatments it will have been over 4 years.  Thats 4 years of his life that he will never get back and 4 years of his life that will take things from him that he will never get back.  He will be living with side effects from this for the rest of his life.

Many of you know that pink is the color for breast cancer.  But did you know that GOLD is the color for childhood cancer?  You see pink ribbons everywhere in the stores and on TV, but where is the GOLD?  Lets give our children a voice, wear gold.  Parents of childhood cancer victims hope that their children live long enough to some day be at risk for breast cancer.  Another cancer mom posted this and its so true.
 Breast cancer awareness supporters- Looking for a great way to gather more people to your cause? Support childhood cancer awareness. Once we find a cure, some of our kids are bound to get breast cancer. And they'll already be great at fighting cancer and bringing awareness. They'll be like the navy seals of cancer fighters. Support childhood cancer awareness to support breast cancer awareness.
By no means am I saying that we should stop supporting other cancers but I am saying that one day I want to see as much gold as I see pink.

Every year childhood cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, AND pediatric AIDS...COMBINED!! On average, 7 children die from cancer each day. That means that this month alone 210 U.S. children will die from cancer.  I have seen this first hand as some of Skylers cancer buddies have already lost their fight.

The incidence of children’s cancer has increased 0.6% each year since 1975. That’s a total of 21% in the last 36 years. Unfortunately, since the 60’s there has only been one new drug approved for use in treating childhood cancer - that was in the 80’s and it’s a drug used only for relapsed leukemia. The one thing that has changed is the dosages of the toxins that kids receive - they keep increasing (which means that the side effects increase as well.

Also Childhood Cancers are the least funded cancers.  It just doesnt seem right that our sweet innocent children that we would do anything for are getting the least amount of funds to find a cure for this devastating disease.  PLEASE help me spread the word so no child has to go through this:

or this...

or this...

or this...

or this...

I know that if we all work together we can give these children a voice and one day find them a cure!
SUPPORT CHILDHOOD CANCER AWARENESS

You can visit these sites for info or to donate towards childhood cancer research:
http://www.curesearch.org/ http://www.alexslemonade.org/ http://www.curechildhoodcancer.ning.com/

Im too tired to say much other than the scan was clear, fevers are getting worse and back on Meropenem.

As I mentioned in an earlier post Skyler is still having fevers.  The week before we were admitted last they put him back on IV meropenem and for that whole week at home he was fever free.  Once we were admitted they stopped it and low and behold they came back that day.  It has everyone even more confused because obviously the meropenem was treating something but they have no clue what.  Still, every culture they have drawn from his line has come back negative and nothing has shown up on scans.  His fevers are gradually getting more frequent and higher again.  I have talked to numerous oncologists and the Infectious Disease teams that have all worked so closely with Skyler and they all flat out told me they just dont know what is going on with him or where to go from here and they have basically left the decision of what to do next up to me.  Its not a good feeling when the docs throw their hands up in the air and say lets leave the decision up to a mom with no medical background.  Its just not supposed to work that way.  They are supposed to have all the answers and make everything better...ya right I wish.  I have been very much involved with making decisions when it comes to Skylers care but this is different.  One of the options that was thrown around was to do a PET scan because that is basically the only test they havent run on him yet and it will show more than the white cell scan.  They mostly use this to detect tumors but they said it can also be helpful in seeing areas that may light up indicating infection in a certain area on Skyler.  After much debate on this I decided to go ahead with it.  I dont like the idea of him getting more exposure to radiation, but its basically our last option at this point and I want to be able to say that I did everything in my power to find out whats wrong with him.  I hate seeing him suffer everyday from these miserable fevers.  Plus if everything looks ok then I would be a little less worried that there is something big we are missing.  Also I have been worried lately about his lump on his jaw bone because its growing again so I am curious to see if anything lights up in that area.  If you dont remember, a couple months before Skyler was diagnosed with Leukemia he underwent two surgeries to remove a mass on his jaw bone to biopsy.  The first surgery they removed alot of it and with our luck the tech threw away the sample before it got to pathology so they had to repeat the whole surgery because of this mistake.  This time because the mass was intertwined around his nerves and they had removed a big chunk that wasnt as close in the previous surgery, they nicked a nerve causing him to lose function on that side of his mouth.  Within a couple months he regained the use of his lip, but lately he is losing it again.  I think it has started to grow again and is pressing on a nerve.  They called it a lipofibromatosis which is a mass of cells that will just keep growing back.  He never had a follow up appointment on this because he was diagnosed with cancer before we got a chance to go back.

The PET scan was scheduled for today and it was a lot more stressful and complicated than I thought it was going to be.  First of all he had to be sedated for this because it is an hour long and he had to lay completely still.  I know he did his other hour long scan not sedated but this machine is alot noisier and it was more important they he hold completely still.  Second they had to inject him with some sort of molecule (cant remember the name) and let that sit in his body for an hour.  They also had to give him contrast as well which is something I am  not a fan of.  Also they couldnt use his dialysis catheter for this so they had to start an IV in his hand.  He thought he was done with pokes so this was VERY upsetting for him.  And the last thing I wasnt a fan of was since they dont do too many PET scans at PCMC they cant afford to buy one for the hospital, so once a week a trailer (yes I said a trailer) pulls up outside the hospital with the scanner in it.  Ghetto I know, I thought the same thing.  So to say I was completely stressed out, overwhelmed and worried for my son was an understatement.  At the last second I was really second guessing this scan but I felt it needed to be done, if we didnt do this we would always be wondering if it would have given us an answer.

To sedate him they went with a drug they havent used before because it doesnt drop his heart rate like the other one would because he now as what they call a regular irregular heartbeat.  This meaning his heart rate is very irregular because it will speed up and they slow down, but that irregular heartbeat is doing it in a regular pattern if that makes any sense.  These last couple of admissions whenever he was on the monitor at night his heart rate would drop down into the low 30s and then jump up to the high 180s.  They dont know if that was his actual heart rate or just the monitor not picking it up because his heart rate is so different, so the NP today played it safe and went with this new drug.  He did really well with it but half way through he started to wake up a little and cry so they gave him versed as well.  The half life on this new drug is alot longer so I have had a high little man on my hands today.  They wont get the results back for a couple of days so its another waiting game until then.  Right now he is sleeping off the medicine and is starting to spike another fever.  Please pray we can get some answers so Skyler can start feeling better.  Thank you.

 Wiping away his big crocodile tears after getting his IV.  I felt so bad for him because he was so excited to be done with the hard stuff now that he is in maintenance.

This is the stuff that they injected into him.

This is the trailer.  Its not as bad as what I was envisioning in my head when they told me they just pulled up a trailer.

                                                               Putting oxygen on him

I dont like seeing him lay there like that.  I just want to pick him up and cuddle him everytime and tell him everything is going to be ok, but I cant.  I had to leave him in that room all by himself on that little table.  Please let this be the last time I have to do this.  You would think after doing this so much that it would get easier, it doesnt, it gets harder each time.

Getting the scanner ready

This is the tech controlling everything.  You can see all the images on that screen.  Its crazy seeing my son like that.

This is blurry but its because I had to look at him through the glass window because no one could be in there with him.  To make sure he was ok they had to sit and watch that monitor that is attached to him through the window.  And since we were outside they told me they had to notify the ER to let them know what we were doing because if something went wrong they couldnt call a code they would have to rush him into the ER.  That didnt make me feel too great

This video is of Skyler when he was just waking up and wanting a cracker.  He is so drugged up in this video that its hilarious!  Its kinda long but the beginning and ending is so funny

 

     http://www.youtube.com/watch?v=a2a6iwRJZbo



Saturday was a special day for us and a day I have been looking forward to for months.  Children and the Earth along with Hogs for Humanity and the L.E.A held a motorcycle rally and Skyler was one of two children that they held this for.  The other boy has had 4 open heart surgeries and a stroke.  The ride was called Hogs for Humanity Motorcycle Rally.  Everyone met at Brewskies in Ogden and then took the scenic route all the way to Lucky 13 in SLC.  These people are amazing!  I was so privilege just to be there and take part in this amazing event, let alone have some of the donations go towards Skyler.  I met some of the most kind hearted and sweet people there and it was so cool to see all the motorcycles.  One thing that was very special to me was my uncle and two aunts rode their bikes down to ride with everyone.  I wasnt planning on riding at all but my uncle Richard asked if I wanted to go with him.  I of course said yes.  I thought I would be really scared riding on a motorcycle but I wasnt scared at all, it was just really fun and the view was awesome.  It was really cool to look ahead and behind me and see all those motorcycles and it was even cooler that they were all their to support us.  Also I thought it was really neat that when we hit an intersection one of the bikers would stop their bike in the middle to block traffic so we could all go through and stay together.  Let me tell you I am anything but cool but being able to ride along side a bunch of motorcycles like that made me think I was cool for a couple hours...(haha ya I wish).  I am so grateful that my uncle asked me to ride with him so I could experience that.  After the ride everyone met at Lucky 13 where they had lunch and a raffle.  I wasnt going to take Skyler at first so I could go around and talk to and thank everyone but he really wanted to see the motorcycles so I let him come.  I was still pretty nervous about him being around alot of people so we stayed back and I wasnt really able to talk to everyone like I wanted but I want everyone to know just how grateful I am.  I am so lucky to have been able to meet such amazing people and be on the receiving end of such great service.  I dont know how to put into words just how thankful I am and how much this means to me.  Again I was reminded of how good people can be and how I want to be.  I am so grateful to everyone who took the time to put this together and make this possible.  I would love one day to be apart of an organization that does so much good for others and to pay it forward!! 

                                   This is a good lookin view

This is where they could register inside Brewskies. 

Some of the awesome people that were there and helped with this amazing event!

These are the kids of my sweet neighbor that helped make this possible for Skyler.  Skyler wasnt too happy about me taking so many pictures of him.  I think if he could smash my camera so I could never take pictures again he would :)

More wonderful people that were there.  The girl with the bandanna on is actually my 3rd grade teachers daughter.  This was really cool because Mrs. Dewey was my favorite teacher ever!

This is my aunt Patti.  Isnt she cool?  I love her and am so glad she came out to support us. 

My dad with my uncle Richard who I rode with and his wife Lori who also rode on her own bike.  Man I love my family!

This is me finding out I get to go too!

My mom and dad got crafts for Skyler to do while they waited for us to get back

Thank you from the bottom of my heart to everyone who came out and who made this event possible!

This picture makes my heart happy!  Farewell ICS and farewell to your giant bags of chemo!

We hit a HUGE milestone today.  Today Skyler finished up his very last high dose chemo and is officially in maintenance!  We have waited over a year to say these words.  Finally there is a light at the end of the tunnel.  For Skylers type of Leukemia, maintenance is usually hit by the sixth month but we all know that Skyler doesnt follow the rule book on how to be sick.  It may have taken us over a year to get here but we are here and thats all that matters.  Maintenance means the end of the harsh chemo and the beginning of a much easier course of treatment.  For the next three years Skyler will take oral chemo at home everyday and will only have to go into clinic once a month for chemo through his line.  Also normally he would get his back poke once every three months but since he is high risk, meaning he presented with a very high white count when he was diagnosed, he will get his back pokes every time he goes in but has the third month off.  They also try and keep his ANC from getting too low so he will be able to start doing more things and live somewhat of a more "normal" life.  What is normal anymore anyway?  I dont think our lives will ever be the same "normal" it once was.  We will just have to find our new normal because we will still be doing this for the next three years.  I cant believe that when we are finally done with treatment it will be over 4 years.  Skyler will be eight years old...crazy.

I am so excited for Skyler and he is so excited too.  On the way home he kept singing "Skyler is in maintenance, Skyler is in maintenance!"  It was so cute and I may have gotten a little teary eyed.  Even though Skyler is in maintenance now we still have to be careful because something as little as a cold can turn into something dangerous for him.  But since he isnt getting such harsh chemo anymore he should start feeling so much better and get stronger everyday.  Right now we have a two week break from all chemo before he goes into clinic.  Im very much looking forward to this time off.  I still cant believe that this is real and we are finally here.  Its been such a long hard road for Skyler so far and I hope maintenance treats him well.  He definitely deserves it.  He is still having fevers that no one can figure out an answer to but I will post more about that later, for today is a day of celebration.  I just cant say this enough SKYLER I AM THE LUCKIEST MOMMY IN THE WORLD TO HAVE SUCH AN AMAZING, STRONG, COURAGEOUS, SWEET, FUNNY AND PERFECT SON AS YOU.  YOU ARE MY LIGHT, MY WORLD AND I AM SO PROUD OF YOU.  I LOVE YOU TO INFINITY AND BEYOND!

On the way out of the parking garage at Primarys when we were headed home I heard Skyler singing this so I turned my phone on.  So cute.  Also at the end of the video you can see a little of why Sky needs hearing aids...he says what a million times to everything I say.  Its dark at the beginning because we were driving out of the garage