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!

 
I think I jinxed us when I said this was the easiest phase because this stay has been so different.  Each day I continue to get more worried about Sky.  His fevers have been getting up to 104 and are becoming more frequent.  One time the Tylenol didnt even bring it down and he is also getting really bad chills with them and he is starting to look "sick" when he is spiking.  His blood cultures continue to come back negative which is good but frustrating because that means still no answer.  Yesterday he went down to RTU for his LP and ABR.  This was scheduled to take an hour but he ended up being under for almost two hours.  Because he was under anesthesia for so long, they had to intubate him and they also gave him a large dose of pain meds and some zofran.  Usually when he goes down for his LPs he wakes up so fast because he isnt out for so long but this time the recovery room was different.  When they let me come back there he still wasnt really awake and wouldnt open his eyes.  He was just moaning and whimpering for mommy.  He was also very croupy sounding because of the breathing tube.  It was much like waking up from one of his big surgeries in the OR.  He didnt do well the rest of the night due to high fevers, chills, and a croupy cough and sore throat.  He slept most of the evening and most of the day today.  Dr.  Lemons decided to put him back on his IV antifungal and back on one of his IV antibiotics that will be given every 8 hours that we will continue at home.  I have been stressing my concern that something is just not right and they are actually listening this time.  He is scheduled for a PET scan on the 24th which will hopefully give us some more insight.  They have been putting this off because he has been irradiated so many times from all of his scans that he has had in the last year that from now on they dont want to scan him unless absolutely necessary (which I think this is at this point)

As far as the hearing test result goes we got some good news.  His hearing loss isnt as significant as they thought it was.  He still has loss in both ears requiring hearing aids but it isnt as severe.  He was fitted for them while he was down in RTU and was able to pick out the color he wants for his molds, he chose blue.  He says its his new favorite color now (its uncle Ty's favorite color so I think that thats why its his now too)  I cant wait until we can get these for him.  It will be nice for him not to have to work to be able to hear things.

This was when the anesthesiologist was about to push in the "sleepy medicine"  Skyler was so scared this time because he told me he had to put the breathing tube in right in front of Skyler.  Skyler knows all about breathing tubes and is scared to death of them because he remembers being intubated in the PICU.

I like the RTU because I am able to hold him while he falls asleep, but I hate the feeling of feeling my son all of a sudden go limp in my arms.

I also dont like the fact that I have to leave him looking like this...

Yesterday was a much better day.  Skyler slept in until 3:30 in the afternoon, I still had to get him up every two hours to pee but he zonked right out again when I layed him down.  He didnt even flinch when all the doctors and nurses came in to check on him and to talk to me.  I admit, it did worry me but when he woke up he was as happy as ever.  Right after he woke up he said "Man I was tired, I guess I need some blood!"  It was so funny.  Its amazing how much medical knowledge he has now, whenever he is extra tired he always knows he will end up getting a blood transfusion....smart little guy.  I guess since he had such a rough night before, and since he was receiving alot of chemo that his body was just worn out and needed all that sleep.  He hasnt had any bad headaches today which is nice and hasnt had to have any pain again.  When he does get morphine or oxycodone though he is the funniest, happiest kid and always comes up with a new reason why he got cancer and how they can get rid of it.  Monday he told me he knew the reason why some of his friends have cancer in their brain.  He said there is a little opening in your forehead that the cancer goes in and to get it out they have to give them the sleepy medicine, put a syringe into their head a suck it out.  Then they can get all better and be happy again.  Man, I wish it was that simple.

Through the night last night he started having really irregular heart rates.  It would drop low into the 40's but then jump up into the really high 100's.  Today they have him hooked up to the EKG monitor so they can monitor his wave forms for 24 hours before they consult cardiology about it.  I hope its nothing serious, but some of these drugs can cause heart problems.

Also, I havent mentioned this before but during our last admit Skyler broke out in a rash all over his body.  They are just little bumps all over his body and they havent gone away.  They had the dermatologist come look at it today and she thinks it looks like Scurvy.  Yes, I said Scurvy....weird huh?  It sounds like a pirate disease.  Its cause by low vitamin C so they are going to test him for that this afternoon.  I highly doubt that its that but Im not the expert so we will see.

Today we went up to clinic to see if Skyler made counts to start a new round of HD MTX tomorrow.  He barely made it so they decided to just admit him tonight instead of just having to come back in the morning.  Since we have been here he hasnt been feeling well at all.  He is having really bad headaches and earaches, he has also been throwing up alot and is still having fevers.   Right now he is on morphine for his head, zofran for being so nauseous, rocephin for fevers, fluids, feeds, and a 23 hour chemo drip.  His IV pole hasnt been this full for awhile and we have been keeping his nurse really busy tonight.  So far tonight has been more eventful than our last two stays combined.  Hopefully after getting some rest tonight he will feel better in the morning.  We have his LP and ABR scheduled for Thursday so Im anxious to hear what the audiologist has to say about his hearing.  Lately he has been telling me that his voice sounds different to him, alot softer than it normally does so hopefully we can get this figured out soon.


                                          This look says it all....
  He is not a fan of people poking and prodding him tonight while he doesnt feel good.

Before starting the chemo bolus and drip of methotrexate they give him another chemo called vincristine

When he spikes a fever they have to draw cultures to see if anything is growing in his line.  He hates this part because it is done sterile so it takes longer.

Here is a pic of his IV pole.  Too many pumps tonight.

This is Tawni, Skylers preschool teacher.

The year before Skyler was diagnosed he was able to go to preschool.  Putting him in Tawni's preschool class was probably one of the best decisions I have made as a parent.  Skyler did so well and LOVED it!  He learned so much and most of all he learned how to get along well with others, share, and how to behave in a classroom setting.  I was so sad when we wasnt able to return the next year because of his diagnosis because he was really looking forward to it and looking forward to seeing Tawni and his friends again.

This year Tawni contacted me and said she wanted Skyler to be the beneficiary of the Bountiful Triathlon that her and her husband were putting together.  This really touched me that she would do this for us.  With help from some amazing family and friends we were able to get volunteers to help out with the race today.  I have been looking forward to this race for months, but unfortunately wasnt able to make it today because Skyler wasnt doing well this morning (those dreaded fevers again)  My mom and dad were able to go and help out though and said it was incredible.  I am so grateful for Tawni and her husband and for everyone who came and helped out to make this possible.  On the back of the shirts that the athletes wore it said I tri for Sky.  Everytime I think about that it brings tears to my eyes.  This year has been awful to say the least, but this year has brought so much good to our lives as well.  Today was one of those good days where I thought to myself just how truly blessed me and Skyler are.  I want to thank Tawni from the bottom of my heart for doing this for us and for being such a wonderful blessing in our lives.  She has had such a positive impact on me and Skyler.   I also want to say a BIG thank you to the wonderful volunteers who took the time to come and help out today.  You are all amazing and I am so grateful for your willingness to help!!