My least favorite day of the week is dressing change day.  Im supposed to change Skyler's dressing once a week but his never stays on longer than four days so its more frequent than that.  This is Skyler's least favorite day of the week too because it hurts him alot.  I used to be able to do this easy by myself but the stitches that hold the line in place have been out for awhile so its easiest to have someone come and help hold the line in place or open things for me while Im holding it so I can stay sterile.  Uncle Ty came today so Skyler was really excited, he screams alot less when he is here.  He sure does love this guy.  He told me one day that Ty is his bestest friend in the whole world, then he said "Dont worry you're my second best friend mom."

As you can see those stitches are useless and the only thing holding that line in place is a little cuff in his neck, so the line has come out a little bit.  It still is in position though and draws back and flushes just fine for me.

He hates this part the most.  I have to scrub alcohol on the site and it hurts him so bad.  Plus when I take the dressing off its red and sore from that so that doesn't help either.  The times when I have had to do this by myself and there is no one there to hold his hand he screams bloody murder.  I'm surprised I haven't had the cops called on me yet. 

This part is the hardest for me as well.  I hate the fact that Im the one that's causing him pain.  I know Im doing it for his own good but it still breaks my heart and physically makes me nauseous when he starts screaming. 

After I let the alcohol dry I have to put cavilon around the edges.  This helps protect his skin and helps keep the dressing on a little longer.  It looks like Im putting it right on the site in this pic but Im just putting it around where the white part of the tape will go.  As you can see the crying has stopped and he has a relieved look on his face.  He likes this part the best because he says its soothing for him.

Finally Im ready to put the dressing on.  The whole ordeal only lasts about ten minutes but seems longer because after Im emotionally drained. 

Then we get to repeat this lovely process in four days.  Definitely not the funnest thing in the world.

Tonight we were able to go to our first HopeKids event.  Skyler was able to paint a pumpkin and do other fun Halloween crafts.  HopeKids organizes events for kids with life threatening illnesses and provides a way of healing through the power of hope and fun things to look forward to.  I have been waiting to take Skyler to one of these but never was able to because of the fevers he had for months.  Finally today he was feeling great and his counts are really good so we were able to go.  He was really looking forward to going and  talked about it the whole day.  We had a very sweet student who sat with him and helped him with his pumpkin and crafts the entire time.  Even though he was very shy and didnt talk you could tell he was really enjoying himself.  He especially loved the candy table and the volunteers that kept bringing him all sorts of treats!  Wish me luck trying to get him to sleep tonight.

I was so grateful for this girl that helped Skyler.  She was so sweet to him and made sure he was having fun.

   I love the back of our HopeKids shirts the best, it says got hope?

           The finished product!  He calls it his alien pirate pumpkin.

                   He also made a fun bat using his hand prints...

                                  ...and a couple fun masks.



Thank you HopeKids for making Skyler's night!

On Thursday we went to go get Skyler's ears "tuned up".  It was his follow up appointment to check his hearing aids to see how they are working out for him.  With his hearing aids in it makes a huge difference but he still has been saying huh alot.  Definitely not as much, but I could tell they needed to be adjusted a little.  Thankfully PCMC has an office here in Bountiful so I didn't have to drive all the way up to the hospital.  The first thing the audiologist had him do was another hearing test in the booth, but this time with his hearing aids on.  Without them he has minor loss with the lower tones in both ears and a very significant loss in the high tones in both ears.  With them on he tested in the normal range with the lower tones and the higher tones were alot better.  He still doesn't hear the higher tones in the normal range but its a big improvement so for that Im grateful.  After the booth she put his results into a computer and then reprogrammed his hearing aids according to these new results.  I've already seen a big difference!  We will go back in a couple weeks for another follow up.

I was so proud of him because he did great in the booth this time.  He sat through the whole thing and was trying so hard to hear the sounds. 

That's the little machine that programs the "hearing eggs".  Before Skyler got them he obviously couldn't hear well so he thought we were saying hearing eggs, he has called them that ever since.

Today Skyler had another first.  His first bath in over a year!  Of course I still bathe him, but I give him sponge baths because he cant get his line wet.  This is definitely one of the downfalls of still having his dialysis catheter still in.  They do make safe guard things that go over the line so kids can still get in the bath but its sticky and it pulls Skyler's central dressing off so it just didn't work for us.  I still wanted him to be able to just sit in a warm bath a play so I came up with what I think was a brilliant plan....saran wrap!  I just wrapped him up and put him in the water.  It worked great and he was able to finally have a bath.  He played in the water forever and I kept having to refill the bath with warm water.  His hands and feet actually pruned!  Haha I never thought I would be so excited about pruned hands.  Its amazing the things I find so wonderful now.  You just never know what you really have until its gone.

 Such a cutie!  Don't worry he can still breathe, it looks tighter than it actually is.

You know your a parent of a kid with cancer when... 

 

1. Kids with hair look kind of strange to you

2. Your pockets, purse, and other nooks and crannies are full of sanitizing wipes

3. Waterproof mascara becomes a necessity...

4. ..then mascara and any other make-up becomes something of the past

5. You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy"

6. You don't realize the Sharps container is on the kitchen table until half-way through dinner

8. Your kid could give you precise directions on how to get to the hospital

9. You do your hair and your Oncologist doesn't recognize you

10. You hear a truck back up and you think the IV is beeping

11. You are so proud when your baby finally gets hair and he's 5 years old!

12. Your IV supplier knows the way to your house without directions

13. Your child bumps his knee and says "I should probably get a CT scan or x-ray" instead of a wanting a     bandaid

14. You can maneuver a double IV pole while pushing a kid in a little tykes car on a tour of the cancer ward, and make it back to the room before the low-battery alarm sounds and the kid has to pee.

15. The nurses stop responding to the IV alarm knowing you'll fix it

16. Your 5 year old holds completely still while his arm is getting squeezed to death by the blood pressure cuff

17. You child's daily conversations include "leukemia" "cancer" and "chemo"

18. Your 5 year old knows where all the medical equipment goes, and how to use it

19. You can eat with one hand while you hold the barf bucket with the other

20. You keep a bag packed at all times like your 9 1/2 months pregnant

21. Your child knows how to access, flush and withdrawl heparin from his line better than writing his ABCs

22. The pharmacy techs ask you how to spell that medication, again

23. The pharmacy tech says, "your 7 day medication (that they pronounce wrong) will cost $700, there isn't a generic form, do you still want me to order that?" You don't blink an eye and say, "of course."  

25. There are four new Mercedes in the doctors' parking lot due to your child's payments

26. You can communicate with your family practitioner in medical lingo

27. You take two dressing change kits everywhere you go

28. You can read the blood work reports better than your nurse

29. You have more meds in your cupboard than food

30. You have more IV meds in your fridge than food

31. You decorate the green chemo masks with silly faces

32. None of the security in the hospital ask you for your ID anymore

33. Your main source of nutrition comes from Tylenol and Diet Coke

34. You wrap your son's birthday presents with medical tape

35. Your child is more familiar with CT scanners and MRIs than a classroom

36. You don't have to ask, "What's that mean" to the previous 35 items

37. You know that the CBC results will either make or break you

38. You hear yourself say, "I'll buy you anything you want" at least once a day

40. You really think this list is funny, when most normal people either don't get it or start to cry

41. When a Radio Flyer wagon is considered an essential transportation device

43. When her ANC is something that determines how well your day is going to be

44. You make new friends, in your pajamas, hair askew, at a breakfast cart

45. When people stare at your child and ask if they are a boy or a girl

46. Your kid takes more medications than your grandma

47. You can reset the IV meds overnight, in your sleep, every 30 minutes without waking up once and still call it a good nights sleep

48. The "CK" on your tee shirt stands for Chemo Kid, not Calvin Klein

50. When every little thing can make you cry

52. You spend most conversations telling people, "it's okay" when really you want to shout out that you hurt really badly inside

53. When your child has to get another poke and screams for the "sleepy medicine"

54. You can make a variety of arts and crafts out of hospital supplies

56. When the doctor finally enters your room and finds you and your child with latex glove powder around your mouth from blowing up the gloves

57. When it's time for your 5 year old to have his vital signs taken and he lifts his arm and sticks out his foot without crying or fighting

58. You have a collection of pink "throw-up-buckets" in every room of your house

59. You think that root beer and Cheetos is a "nutritious meal" because it's all he'll eat

60. Your reading materials consist of insurance statements and bills

61. Your sons hair finally grows back and no one in the cancer ward recognizes him anymore

62. When your bookshelves have more childhood cancer books than potty books

63. You have forgotten how to cook because you spent the last year eating in a cafeteria and having meals brought to your home by kind neighbors

64. A bag of blood is a refreshing and happy sight

66. You wish there was as much GOLD as there is PINK

68. You celebrate when your 5 year old can walk from one side of the room to the other without being exhausted or crying out it pain

69. You have to explain to your kid that cancer is not something every child usually deals with

(I took this from another cancer blog but switched alittle around to fit us)

I took Skyler to get his first real haircut in over a year today.  He has always hated getting his haircut and used to always squirm around, but today he just sat there like a big kid and did so good.  I think he was just happy to go back to a place he used to go to.  Something normal he can do again.  It was really fun to be able to take him there today, but I do have to confess that I miss his little bald head.  When Skyler was first diagnosed I never thought I would ever say that because having him lose his hair was hard for me.  It made things more real.  But now that bald head means so much more to me, it symbolizes strength and courage and to me it makes them even more beautiful.  That old saying is so true, bald is beautiful.  Even though I miss that bald head I am grateful he has his hair back because that means he is farther along in treatment and that much closer saying goodbye to chemo forever!

He just looks so grown up to me in this picture.  Its moments like these that I sit back and wonder where my baby went.  Now that we are home and things are settling down a little bit more I sometimes think he should still be that little boy that he was before he was diagnosed.  But then I realize it has been a whole year and he has grown a ton, not just physically but he has also matured more because of all he has had to go through. 

We also went to a movie this week and out to eat.  Skyler chose Iggy's so thats where we went.  I dont like taking him out to eat just because I still get anxious taking him indoors around alot of people without a mask, but I put those feelings aside and took him anyway.  We pass this place every time we go to the store and he always would say "When I get to maintenance I really want to go there Mom."  He was so excited to finally be there and couldnt choose between the two things he wanted, so I said what the heck and let him order both meals.  I really didnt think he would eat them both but he actually did.  He has been a champ at eating lately.

And what's two meals without two deserts?

I also took him to a movie this week.  A new theater opened just down the street from my parents so we decided to check it out.  He chose to see Dolphin Tale in 3D.  He loves going to movies so he was so excited to go.  I love that I can take him to some of his favorite places again and do things he used to enjoy doing before cancer took over our lives.

On our way home we were talking about Skyler's game room.  He asked me "Mom when I go to heaven will all my games be up there waiting for me?"  I told him they probably would and he said "Sweet heaven is awesome!"  I also told him that in heaven there isnt any cancer or owies.  You should have seen the look on his face when I told him that, he was so happy.  He was even happier when I told him that there are no central lines or pokies there either.  It was the kind of happy like when you just tell your child they are going to Disneyland or something exciting like that.  He then looked up to the sky and smiled really big.  Talking about heaven with Skyler isnt an easy thing to do anymore.  I have always talked openly with him about heaven because he knows that's where his daddy is and when he misses him he askes alot of questions.  I get choked up even thinking about it now. Sometimes I wish I lived back in that world where ignorance is bliss and parents out living their children wasnt a possibility.  As hard as it is being thrown into this world of cancer, it has taught me just how lucky I am that I get the opportunity to take him to the movies or out to eat.  Even the littlest things and moments I cherish even more now. 

 Love you Skyler!

I just want to say how amazing, strong, and brave these little cancer heros are.  I saw a tiny glimpse of what these kids go through everyday and its truly awful.  Long story short I ended up in the ER with "stroke like symptoms"   and had a CT scan and MRI of my brain, an EKG and some blood work done.  I was only there for five hours because everything checked out ok but those five hours were torture.  That MRI machine is a scary thing even for an adult and these kids do that all the time.  I am so claustrophobic and was starting to freak out a little but I quickly thought of Skyler and all that he has to do and all those other little kiddos that have to have their heads bolted, yes I said bolted, down to a table for radiation and told myself this was nothing compared to what they have to go through.  The whole ordeal was something I hopefully dont ever have to do again but these kids dont have a choice.  Their everyday lives are filled with hospitals, doctors, pokes, scans, pain, fear, and poison constantly flowing through their veins.  As an adult I knew what they were doing to me and what it was for but alot of these kids are too little to even understand why they feel so miserable all the time and why they are constantly having to do things that are scary.  I respect and look up to these kids so much.  They truly are superheros.  I know I could not do what they have to do on a daily basis and still have a smile on my face.  They are stronger and braver than I will ever be.

Instead of capes, these little superheros have all sort of tubes and lines attached to them.

 Instead of masks covering their eyes, these superheros wear green masks.

Instead of a batmobile they ride around in wheelchairs, on IV poles and hospital beds

Instead of batcaves they live in hospital rooms

 Instead of fighting a villain they can see, they fight an evil villain that is lurking in their bodies

 Unlike superman or batman these superheros dont come out of the fight unscathed.  They come out with plenty of battle wounds

 Instead of using big muscles and weapons to fight, these kids use their courage, inner strength and smiles to win their battle.

  Whenever I hear the word superhero, this doesnt come to mind.....

                                                                        This does....

Skyler doesnt fight alone.  He fights along side thousands of other cancer heros.

Skyler had his monthly clinic appointment today.  I cannot believe its already been a month and he actually went that long without having to go in.  I have been looking forward to this appointment for a couple weeks now, even though I hate going to clinic it just felt too weird that we had so long between visits.  Even though I give him oral chemo everyday there is something comforting about him getting chemo through his line.  It feels like we are keeping those bad guys away better.  It seems strange, but he has been acting and looking so normal lately that it worried me a little.  Im so used to always being in survival mode and having so much going on with him that its just so weird to just sit back and watch him be able to be a kid again.  He looks SO GOOD!  He has gained weight and actually looks healthy.


When we got Skylers counts today his ANC was way too high.  They want to keep it anywhere between 800 and 1300 but his was 5500 so they upped the dose of both of his oral chemos.  Im hoping his counts will drop soon, not too low but low enough to know that the drugs are actually working.  Everything else went great.  The doc said he looked so good and I didnt have too much to talk to him about because he isnt having fevers anymore and he is acting great.  He did have to go down to RTU for another lumbar puncture for chemo in his spine today though.  They didnt have his Vincristine ready for us before we went down this time so we had to come back up to clinic for chemo afterwards, but we were still out of there in four hours.  On our way up to clinic when we first got there I ran into one of the resident docs that took care of Skyler in the PICU and she could not believe it was the same kid.  She told me that he was truly a miracle.   

When we first get to clinic Skyler always gets weighed first thing.  His weight went up from 16.4 kilos to 18.4. Awesome!  I remember when I had to hold him to get weighed because he wasnt strong enough to stand on his own.  This picture makes me smile because he has come along way.

  They also have to see how tall he is.  The dosage of his meds depend on his height and weight.

         He has done this so much that its no big deal to him now.

Im the one that usually draws his labs because I like it done a certain way so its just easier.

Not sure whats up with the face, silly boy but I threw this one in there because I normally dont even see his scar anymore where they took out his spleen because Im so used to it.  When I saw this picture I was kinda shocked at how big it actually is.  He sure has a lot of battle wounds, good thing he's a boy.

This is down in RTU waiting to go back.  They got out some robots for him to play with to keep him busy.  He was getting really antsy waiting around because he was so hungry.

After he falls asleep in my arms I leave and wait in the hall.  I usually here him start crying back there for mommy before they come get me, but today he took longer to wake up.  When they took me back there he was still sleeping so they had me wake him up.  Right when he woke up he wanted the usual crackers, cheetos and root beer slushy.  He told me today that he likes the sleepy medicine now because he likes feeling dizzy before he falls asleep.  Oh boy Im in trouble.

Finally we went back up for vinc.  This is just a quick push so it doesnt take long at all.  Next month he doesnt have to get a back poke so it should be even quicker.  He is so happy about that.  He is not a fan of the hurry up and wait game.

Other blogs I read usually put their kids stats on here every clinic visit.  I never did because he got labs drawn so often that it was just a pain, but I'll start that now so I can keep track for myself too.

ANC:  5.5

Normal 1.5 to 8.5

PLATELETS: 236

Normal 150 to 400

HCT: 30.5

Normal 34.0 to 40.0 (30.5 is still really good for a cancer kid)

WBC 8.9

Normal 5.5 to 15.5

Please feel free to pass this on

The Creating Hope Act is...

"...legislation that would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers, that have not been developed in decades because they are not profitable ... the Creating Hope Act of 2011 ... would expand the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases.  Since 1980, the FDA has approved only one drug for treatment of childhood cancer, compared to 50 for adults."
(Read more HERE on the Childhood Cancer Caucus Website)

Oh, boy! This is something we should be shouting out on our rooftops.

Finally, finally, finally something can be done to get more treatments for childhood cancer.

Our own Utah Representatives are not listed as supporting the the Creating Hope Act, but with a minutes time we could each hopefully get Utah's representatives in support of this important Act.  There is an easy on-line form that you can "fill-in" with a few sentences about why this is important to you and have e-mailed directly to our Representatives.

CLICK HERE 

To get to the online "fill-in" form
It only takes a couple minutes and it will mean so much to me
Thank you

 

You can read the House Bill HERE

Did I mention how much I love Make-A-Wish?  Well I do, they are amazing and they truly make these kid's wishes come true.  They bring a little bit of magic and joy into their lives that have now been consumed with hospitals, doctors, pokes and ouchies and so much more that they shouldn't ever be exposed to at a young age.  Today Skyler received more wonderful news from our wish granters.  They are going to give him a shopping spree to GameStop to pick out some games for his new game room!  First of all, Skyler loves GameStop and loves being able to pick out a new game, so this was the best news he could have heard.  This was his face after I told him.  He sat like this for what seemed like forever and I was able to go grab the camera and he still had this look on his face.

Thank you Make-A-Wish for making Skyler the HAPPIEST kid in the world today!