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

Today is a bittersweet day for me.  The good part is that today is the start of Skylers LAST round of inpatient chemo before maintenance!  The sad part of today is that instead of starting his first day of Kindergarten today, Skyler is at a hospital getting large amounts of chemotherapy pumped into his little body.  This is not what I had envisioned for my little boy when he was old enough to start Kindergarten.  I know I said a couple months ago that Skyler would be able to go to school this year but after ALOT of thought and debate I have decided to hold him back a year.  I know it was the right decision but its still hard.  I made this decision based on the fact that he still isnt in maintenance yet and we are still battling these unknown fevers.  He still wouldnt be able to go the full year anyway because I would keep him home during flu and respiratory season.  Also, he has basically lived this past year in a bubble so his social skills are a little behind, and I want him to have this year to let his body heal from the very traumatic things it has gone through.  My goal is to get him back out into the real world and to have fun and play and socialize with other kids.  It will also give him a year to get his walking back where it was so he can keep up with the other kids.  Also, next year he would be the oldest in his class instead of the youngest and I heard that boys tend to do better when they are in the older part of the class.  I feel good about this decision even though it was a tough choice to make.  

               Getting chemo today with a smile on his facce

On Saturday I really wanted to do something fun with Skyler before we were admitted this week so I took him mini golfing.  He absolutely LOVED it!  He usually tires very easily and cant walk very far especially in the heat that he has become so sensitive to, but he walked the whole way.  Even up and down big hills and curbs.  This was the best physical therapy for him.  I know he pushed himself harder because he was thoroughly enjoying himself.  He is actually a pretty good golfer, alot better than mommy who hit hers into the water.  Grandma, grandpa and uncle Ty were able to come too which made it all the more fun for him, especially because his best buddy Ty was there.  It was so fun to get out and forget about cancer for the night and to see his smiles and laughs!

(Sorry in advance about the loud wahoo, sometimes I forget that Im recording haha)

One year ago today I heard one of the worst news you could hear as a mother "Your child has cancer"  I just sat and bawled in that emergency room as my son layed on a gurney too sick too move.  I just couldnt believe that he had cancer flowing throughout his little body, but in my heart I knew it was true.  This was the answer to my weeks of knowing something was just not right with him.  At that moment everything made sense.  The mysterious bruising all over, the swelling, not being able to walk and asking my why I was hurting him all the time with just simply getting him out of his carseat.  So many thoughts ran through my head but I could never have imagined what lay ahead for my precious boy in the year to come, especially those first four and a half months.  We were admitted that night to the ImmunoCompromised Unit.  As I walked through those doors another wave of emotion and reality hit as I saw little bald children hooked up to IV poles playing in the playroom.   The next day the diagnosis was set in stone when they told me what type of Leukemia he had.  Pre B cell Acute Lymphoblastic Leukemia.  He went into surgery that day to place a port in his chest that went directly into his heart, so they could pump poison throughout his body to kill those horrible cancer cells.  We were told he would stay there for about a week and then we would be able to do the rest of his three and a half years of treatment outpatient.  That one week turned into 4 1/2 months, three of which were spent in the ICU, and half of the time in the ICU was spent on life support. Within a couple weeks Skyler developed tumor lysis that completely shut down his kidneys and he was put on dialysis for renal failure.  He also developed an invasive fungal infection that took over his whole body which led to failure of five organ systems.  It started out in his sinuses and he went through countless surgeries to try and scrape it out.  Eventually the surgeon stopped operating and told us there was nothing more he could do, to get it all out would leave his face completely disfigured.  Each time an organ fails it decreases your chance of survival, so with five organ systems that had failed it decreased his chance by alot.  I was told later that no one thought he would ever get off the ventilator because most kids that sick dont survive.  I still to this day have flash backs to the most horrific night of my life when they told me to say my goodbyes because he probably wouldnt survive the next couple of days or maybe even the night.  Family was called and gathered around while I sat crying holding his warm little foot wondering how I could possibly say goodbye to the one person I love more than anything in the whole world, he is my world.  I wished with everything in me that I could trade places with him.  Skyler surprised everyone though and held on.  He is such a fighter, a hero.  He survived months of dialysis, six weeks completely sedated and on the ventilator with a room full of machines keeping him alive.  He had his spleen removed, fifteen different lines placed to pump the life saving chemo, other medicines, blood and platelets into him.   He had well over a hundred platelet and blood transfusions.  At one point they actually ran out of places to place a line that they ended up putting one behind his knee.  He was covered head to toe with tubes putting stuff into and sucking stuff out of him.
I wouldnt wish upon my worst enemy the things I saw done to my son.  I have horrible flash backs and nightmares to this day.  I have felt emotions that I never want to experience again in my lifetime. 

 Along with so much pain and heartache that  this past year has brought, there has also been so much good as well as weird as that seems.  I got to experience the amazing joy of seeing my son open his eyes again for the first time.  I got to experience his first drink, the first time he talked and sat up and even walked again for the first time when these tasks once seemed impossible.  I got to experience the selfless service of others.  People I didnt even know helped carry me through days when I didnt know how I could go on.  I learned just how lucky I am to have the best family in the world.  My mom spent six weeks sleeping in a rocking chair without leaving my side.  My dad came up everyday.  And my brothers and sisters and extended family were there whenever I needed them.  I have learned things about myself that I didnt know before.  I learned that I am stronger than I thought I was and learned what kind of person I want to be from being on the receiving end of such wonderful acts of kindness.  I have learned to never take the little things for granted because you never know when those might be taken away from you. 

I still cant believe it has been one year.  It seems like a lifetime ago that my world was turned upside down but then again it went by so fast.  Thank you so much for all the love and support that you have shown me and Skyler.  I definitely couldnt have survived this last year without it.  Thank you for taking the time to read about my son and being apart of this cancer journey with us. 

"Life isnt about weathering the storm, its about learning to dance in the rain."

This is Skyler a week or two after diagnosis.  He went into renal failure so they placed the dialysis catheter you see sticking out of his neck.

This is after they found the fungal infection.  They had to remove his central line and dialysis catheter that were infected by the fungus.  The bruising on his neck is from the line removal.  He also got severe burns from the EKG patches.  He is also starting to swell from his kidneys not working

 
This is after they placed another dialysis catheter.  He gained over 10 pounds in one week from retaining so much fluid.  Those red lines are his blood going out of his body, getting "cleaned" and going back in.  I about passed out the first time I saw the blood start coming out and going through the machine.

The fungal infection spread to his lungs along with fluid making it difficult for him to breath.  The placed him on the bi-pap for support.

It got to the point where he couldnt breath on his own so they had to intubate him so a machine could breathe for him.  They also had to place a new dialysis catheter.  He has had five different dialysis catheters

He is so swollen and bruised from being in renal failure and having low platelets.  He also started turning yellow from his liver shutting down.  He has had a total of 6 chest tubes also to drain fluid from his lungs

Those are pressure sores on his face that he received from the different bi-pap masks before intubation.  He also had a very bad pressure sore on his bum from not being turned when he was so swollen.

   These are all the machines that kept Skyler alive for three months.  It was a very noisy room

Skyler was so fragile that it took alot of people to lift and move him.  He was so fragile that even I couldnt hold him.  It was so hard not being able to hold my own son for months.  He was in isolation alot of the time due to all his infections, that is why they are wearing those yellow gowns

  This was right before they took hom down to remove his spleen.  And yet again another dialysis catheter

Skyler spent many holidays in the hospital

Halloween

Thanksgiving

Christmas

New Years

And Easter

It has been quite the year, but we made it...Skyler made it.  And here he is today my little superhero and one heck of a fighter!

I love you Skyler!

We are finally home and its been wonderful.  Today was a very proud mommy day, Skyler rode his bike for the first time since diagnosis!!  Just the mere thought of riding his bike again scared him and he kept telling me he just wanted to give it away, but today I brought it up again and he said "Sure Ill try it"  I was ecstatic and told him that I would hold on to him the whole way and that he just needed to pedal, but once he got on he just took off.  It was amazing!  At one point I didnt even know if I would ever see him walk again let alone ride a bike, so today was a day I will never forget.  I told him I was so proud of him and he said "Oh good I was trying to make you proud of me and Im so proud of myself too."  So sweet.  The best part was that he really enjoyed it and didnt want to get off.  We also saw another little girl riding a bike and he sped up to be by her.  I think he thought it was cool that he could do something that all the other kids can do and could feel a sense of normalcy again.  I love that I can add this to the list of "firsts"  I have seen him do again that alot of people thought could never happen.

                        WAY TO GO SKYLER!  IM SO PROUD OF YOU!