Clean Bill of Health!

March 13, 2014

Well… here we are, 35 days into our life without chemo, ( 65 since his port removal)!  I couldn’t have ever imagined that we’d be here! It’s truly amazing how Kace’s entire world has changed since Jan 14th when he got his port removed…  it’s been an adjustment for us all- transitioning into this new life. And trust me,  I’m not complaining about the adjustment one bit… believe me!  It’s  strange how we as individuals get to accustomed to all the chaos, and when it’s gone, we don’t know quite how to just ‘be’! We are all learning… and enjoying every minute of it!

photo 1-1Jan 14th was a great day for us all. Kace went into clinic as we always do. He was so excited and nervous, he was so happy that his brother was able to go and be there with him. This was the first time that Gaige was able to come into clinic, ( rules are that no siblings are allowed… and understandably so…immunocompromised kids in clinic cannot risk getting infections). photo 4-1Gaige was so sweet and so supportive. The night before he said something really funny to me… he said, “Mom, I don’t even know anything about Kace, I don’t even know about his life!” It was a special time for him to see exactly where Kace had been going each month for thephoto 1 past 3.5 years. I had never thought of explaining our monthly routine to Gaige until that moment.

photo 2photo 3

 I’m so glad he was able to come up and experience it for himself. We forget that Gaige’s life has been turned upside down the last 3.5 too, not just Kace’s!

photo 2-1photo 3-1

Kace port was accessed as usual and he received that last and final dose of Vincristine, (the chemo he’s received every single month for 3.5 years)! What a great feeling that was!!!  He was serenaded by the staff, and then rang the infamous “bell”!  An indescribable feeling… I had a hard time containing myself  because I was flooded with so many emotions! ringthebell

Next on our agenda,  down to OR for his port removal surgery! He wanted to keep it after the doc removed it so that he could keep it and show his school class, but he couldn’t, ( policy is that anything that has been touched by chemo cannot leave the hospital because of how toxic it is).  It’s hard to wrap your brain around the fact that the medicine, (or toxic liquid)  you’ve been putting into your child’s body is poison to someone without cancer.  Anyways, the surgery went as smooth as expected … and that was it! Seemed so empty. And I don’t even know if empty is the right word. It just felt so strange to just say goodbye to the nurses and doctors who saved your child’s life. And not only saved his life, but that have been in your life for  3.5 years. And  then to have them say, “Ok… you’re free to go, see you in 6 weeks for a post-op visit!” I can’t explain the feeling accurately, but the best description I can find is empty. As I said before,  really strange  how you get used to pain, you get used to chaos, you get used to the anxiety that comes with having a sick child, ( or any trial for that matter). And when you no longer have that, you feel almost lost without it. 

 

photo 1photo 2On our way home~  and I lost it in the car! Not because I was sad, but because I had so much joy in my body I had no other way to express it but cry… out loud! I can’t remember every having felt that much emotion before… 3.5 years of going through what I thought I would never be able to get through… and it all ended that day! It’s why this last entry took me so long to compose… I’ve had to really come to grips with this new life, digest this new feeling of calm, and how to move forward without IT…  without cancer!

When we got home Kace and I spent time together talking about the last few years, watching his youtube videos and looking through his pictures, ( talking and looking at things that he’s pushed away for years… for Kace, being vulnerable to his ‘truth’ has been really hard… and I get it- Cancer is terrifying, and I can’t imagine exactly how terrifying it is when you are the one that has undergone the trauma). This time we spent together will go down in my most treasured and special moments ever. Kace was so vulnerable, so present, and so honest with his feelings. We both cried, laughed and celebrated together… so healing… so many emotions! I will be forever grateful that I could share in that experience with him.

So…  where are we now? Kace is doing absolutely amazing! He has SO much energy and spunk… for me it’s like having a new child! His teacher even said how fun it is to see him participate and engage in class, rather than laying his head on his desk and acting so lethargic and tired all the time. We’re taking one day at a time…still working through our fears each day.. Still trying to adapt to the silence…the calm silence without Cancer.  It’s definitely a life we will get used to!

I just wanted to say thank you. Thank you for supporting our family and for following Kace’s journey. This Blog was such a great way for me document this experience. It will be printed and saved for him, so that when he’s all grown up he will be able to look back and remember what a fighter he is… he will forever be my INCREDIBLE KACE!!!

photo 3

Love,

Erin

Why I admire Kace

October 12, 2013

kace alone LPKace wb in LP

 

 

He is happy * He is brave *He is a fighter* He won’t give up* He pushes through * He doesn’t let this define him* He has faith* He is loving *

I can name two times during this entire 3 year battle that Kace has broken down. One of them was last week when we had to go to the Pulmonary doctor, (for Kace’s asthma). We sat in the clinic, talking to Dr. Gershan about Kace’s history with his lung issues. *here’s where I inject a super consolidated version of his health history. For those of you who don’t know what Kace has actually been through during his short 8 years here is a small synopsis. Born, 5 1/2 weeks early. Because he had such weak lungs, he contracted phenomena in the hospital, (or from me). Was in ICU, on oxygen and antibiotics, (one of which “may cause deafness”… and it did. Kace is hard of hearing in both ears. He has hearing aids, but won’t wear them because they bug him so bad… he’s really good at reading lips though :)  Colitis as an infant, RSV twice, ear infections almost every other month, sinus infections… from infancy to 2 years old he was always dealing with this overabundance of mucus. Age 2 he had his tonsils, adenoids and tubes put in, ( the first of four sets of tubes mind you). He did much better for awhile until Nov of 2007 when he was diagnosed with Guillian Barre’ Syndrome following a flu shot, ( an autoimmune disease that left him paralyzed from the waist down). The doctors told us that it may take a year for Kace to walk and ride a bike again… he did it in one month- fighter! From there Kace was always dealing with issues with his stomach, (aside from his colitis as a newborn, Guillian Barre Syndrome left his intestines without the ability to to work properly… so we were always dealing with issues).  At this point,  he was officially diagnosed with his hearing loss after a ABR was done, age 4. And at age 5 1/2… Leukemia* So back to my first story about only seeing Kace breakdown very few times. In the clinic, after I had went over Kace’s history with the doctor, he  looked at me with tears in his eye and said, “Mom, why does Heavenly Father want me to be so sick?” You may as well had ripped my heart out right there. Being the mother of a sick child you are left feeling helpless… you cannot heal them, you cannot take this away, you cannot take this from them. It’s so painful. I told Kace that Heavenly Father didn’t want him to be sick, and that it’s not because Heavenly Father didn’t love him. I told him I didn’t know the reasons, but I did know that Heavenly Father knew that he was strong enough to handle all this… because he knew that he was a fighter… !

Another thing I love about my Kace is the fact that he doesn’t want to be defined by cancer! He is a boy who loves skateboarding. Who loves snowboarding. Who is smart. Who is funny. Who is blonde. Who has blue eyes. Who loves to watch WWE. Who loves his dog. He refuses to be known as the boy who has cancer.  He only will let me tell his teachers that he is going through chemo… he doesn’t want any of the kids to know. He didn’t want me to tell his PE teacher… I told him that I would only tell people if they needed to know for safety, and I felt that his coach needed to know for safety. I asked him why he was so resistant to me telling his coach… he said, “because, I just want to be like all the other kids”. That really hit me hard. Here he is, receiving the most evil of medicines into his body, and dealing with all of the crazy side effects that they cause, ( mouth sores, infections that he cannot fight because his immune system is so compromised, fatigue, headaches, stomach aches to just name a few) and he wants to be treated like all the other kids… no special treatment.

He. Is. Inspiring. 

I really just felt the need to write about him and his strength. He is such an inspiration to me on how to deal with the challenges life brings. He truly does “dance in the rain!”

I love him so much… and I can’t wait until his treatment is over in 4 short months!!!!!

 

kace and mom LP

Only one more back poke!!

September 27, 2013

Every three months Kace gets a back poke. The two months in between are pretty easy… we go in, he gets access his port) they administer his chemo, ( Vincristine) and we’re out the door.  Back Pokes are different. We do all that, plus we go downstairs to the RTU, he’s put under anesthesia and the do his Lumbar Puncture or Back Poke, (they take spinal fluid out and replace it with liquid Methotrexate). There’s no doubt has more anxiety surrounding the back pokes… it’s truthfully the only time  I see intense fear in his eyes.  I’m not sure what happened that made him fear “going to sleep” { that’s what we call it when he goes under anesthesia   } and maybe nothing did… All I do know is that we both dread when it’s the end of the 90 days! This was our second to last back poke… only one more to go Dec 17th!

He did great today ~ as always! So brave, so patient, so happy~  despite it all!

 

SAMSUNG CSC

Thank goodness for Lindsey, his nurse. She makes him feel so safe and calm. She’s so good at accessing his port! You can’t imagine how something as small { in the whole scheme of things} as poking a needle in his central line can either make the rest of treatment simple and smooth or darn near unbearable. Its for sure the one thing that can send him in a tailspin if  his port isn’t accessed well. Thank you Lindsey for relieving Kace’s anxiety, for making him feel safe and for taking care of him, [ even when you aren’t assigned to us that day ] !

SAMSUNG CSC

April 8th 2013

April 8, 2013

I cannot believe I haven’t posted in 3 months… where does the time go? Kace’s hair is getting longer and longer and pretty soon he’ll be done with all this. He’s doing so well and is responding to the chemo like a champ!  Kace is one of the strongest kids I know… physically and emotionally. Only 3 more back pokes to go!! 
IMG_4520IMG_4411

IMG_4185

Two Years Ago Today!

December 1, 2012

Incredible Kace

 

Two years ago! As I’ve been sitting here thinking about that day, and all the emotions that surrounded those moments…  it’s almost too painful to think about and write . So I won’t go much into that day, but I will write and tell you that I believe. I believe in miracles. I believe in angels. I believe in the power of prayer. I believe in family. I believe in friends. I believe that everything happens for a reason. I believe we can learn and grow from our trials… if we choose to.  I believe in courage. I believe in healing. I believe in love. I believe in change. I believe in Kace.

Josh told me that he now understands that having to “pick someone up off of the floor” was not just a metaphor, it was indeed a real thing. After hearing the words, “your son has Cancer” I literally dropped to the floor… sobbing, wailing, asking Heavenly Father why… unable to come to grips with what was going on.

Two years ago. Two years later, we’ve all stood up… put one foot in front of the other and faced this hideous disease one day at a time.  Especially my Incredible Kace. He has such strength, such drive and such a positive attitude about life~ what he’s been through and what he has to continue go through would take most of us down. Not him… he’s amazing… truly amazing!

Love to all of you!

I saw this video today and thought it was really neat… please watch! I’m so thankful that it’s gone from 4% to 94%

http://video.today.msnbc.msn.com/today/49899604

 

Kace’s counts are up yet again another month… yay!  Chemo was a success and he was as brave as he always is.  He’s feeling great and is so excited for Christmas… already! :)


UPDATE- 11/5/2012

November 5, 2012

Everything is good, Kace is doing amazing. Counts are right where we want them and he’s been stable at 100% of chemo dosage… that’s a really good thing for long term! Love you all… love you Kace.

Lagoon and Cornbelly’s


Staying the weekend in Park City

Back Poke time and he was not too happy about this appointment :( He gets really nervous for these ones… he did amazing!

Halloween parade!

Follow

Get every new post delivered to your Inbox.