Saturday, December 31, 2011

Skyler certainly has come a long way since this day last year.  2011 has held alot of ups and downs for us.  Alot of pain and suffering but also alot of triumphs and blessings.  I am looking forward to moving even farther ahead in this coming year and having alot more ups than downs!!


Tuesday, December 27, 2011

Christmas this year was perfect.  Just the fact that we were at home and Skyler is doing so well made it so special.  We slept over at my parents house on Christmas eve so we could open presents with my parents and uncle Ty.  Skyler was so excited for Santa to come and he got just what he was asking for, a 3D Mario DS game!  It was so fun to see the excitement on his face when anyone mentioned Santa coming.  Last year he was still too sick to get really excited about it so it made this year even more magical.  Before we went to bed he helped my mom make cookies for Santa.  He decorated them and put those out along with a big glass of milk.   Another thing that made this Christmas so special was a couple presents Skyler gave to me.  On Christmas Eve he surprised me with a beautiful vase full of flowers.  He loves getting me roses and it melts my heart every time.  He also got me a gold childhood cancer ribbon necklace with real diamonds on it.  It is so beautiful and absolutely perfect, something I will always treasure.  I have been looking for a necklace like this for so long but couldn't find one, so this surprise was awesome.  He actually gave it to me at the beginning of December right after he got it because he just couldn't wait to give it to me.  One thing about Skyler that I love is that he LOVES giving people presents and it is so hard for him to wait to give it to them.  His dad was like this too so its really cute to me and I love that he enjoys making people happy.  A little while ago we were talking about what kind of jobs people have and he said that his job in this world was to share and to make people happy.  What a special boy he is and a great reminder everyday about what is really important. 

I didnt take too many pictures because I wanted to enjoy each and every moment of that day.   Here are a few though that I was able to take. 

Friday, December 23, 2011

One of the greatest lessons I have learned this past year is how good people really are.  I have been so humbled being on the receiving end of such amazing acts of kindness, and it has taught me what kind of person I want to become.  As the holidays approached this year all I could think of was that I wanted to give back in some way.  When I think about Christmas, as sad as it may sound, I think of the PICU.  We didn't actually spend Christmas day in the PICU but we did spend most of December there.  My heart aches for the families that are going to be spending their Christmas in the PICU this year.  That is the last place anyone wants to be with their child, let alone on Christmas day so I wanted to let them know that someone cares and is praying for them.  I wanted to give a gift that was really helpful for me down there and one that was helpful to Skyler.  I remember at night when I was finally able to lay down in my "bed" for a couple of hours I froze to death under the vents.  A fellow cancer mom gave me a nice big blanket that covered my whole body and it was a life saver, so I wanted to include a nice big blanket in the gift.  The blanket was also really helpful when after finally getting to lay down the nurse has to wake you up for shift change and make you go out for an hour, and I was able to take my blanket and fall asleep for an hour in the waiting room.  The blanket was big enough to cover my head so I didn't have to see everyone.  When I asked Skyler what was the one thing that gave him the most comfort he told me it was a teddy bear he received, so I had to include a teddy bear for the kids.  Since everyone down there knows Skyler as Super Skyler I had to put a cape on the teddy bears, and since I think all these kids are superheros it just fit.  I also attached a tag that said "Hugs From Skyler." 

I am so grateful for the people who helped make this happen by donating some blankets and money.  I'm also so grateful for my grandma who made all the cute superman capes, and for my mom who helped me put this idea into action.  I am so blessed to have such a wonderful support system and to have people really care and want to help with something I am so passionate about now.  I hope Christmas this year is as special to you all as it has been for me.

Here is the cute capes my grandma made.  The brown bears for the boys and white bears for the girls with pink capes.

I also got his cake for the staff as a thank you for making it possible to have Skyler here with me for another Christmas.


Tuesday, December 20, 2011

Below is a cute video of Skyler bustin a move!  I just couldn't stop smiling the whole time he was dancing because this is the best gift I could ever get for Christmas this year.  I couldn't help but think back to this video of him so tired and weak that it took all his energy to even hold his head up.

Now he has enough energy and strength to pull off these sweet moves.  Miracles do happen!  I love this child more than words can even say.

Saturday, December 17, 2011

Skyler was finally able to stop the vancomycin on thursday...yay!  I was so ready to be done with hooking him up round the clock and so was he.  Also, since he has been off all his oral chemo for the last 10 days that means his ANC is high, a great immune system to go to a family Christmas party with.  I was really excited to take him to this party and to have him play with his cousins that he hasn't seen for awhile.  He was able to run around with all the kids and open presents and just have fun.  Even though his counts are great I still had him wear his mask when he was around everyone just to be on the safe side.  Plus it helped calm me down alittle because honestly I was freaking out inside.  I loved that we were able to go do something normal that we do every year (besides last year) but at the same time it is so hard to try and pretend everything is normal when it is not.  I have had to go from having him live in a bubble to letting him be out in the world again.  When he hit maintenance I was so happy to finally get back to how things used to be.  I never in a million years thought it would be this hard.  I'm having to relearn how to live again but still have in the back of my mind the images of this past year and knowing something as simple as getting a cold so quickly lead to something worse and land him in the ICU again.  I hope one day that this constant struggle will fade and living out in the world become natural again. 

 I tried really hard not to let these feelings show though so Skyler could just relax and have fun.  It worked because look how happy he is in these pictures!

Sunday, December 11, 2011

Yesterday we had a wonderful surprise.  Skyler's cancer buddy Jessica was up here from St. George and came to visit.  We met Jessica and her family when Skyler was still in ICS and hadn't been able to come home yet.  She is now in remission and totally off treatment!!!  She gives me so much hope.  I love her and her family so much.  They are some of the nicest people you will ever meet and just have a light about them that draws you in.  This family will always mean so much to me. I am so grateful that they were able to stop by and say hi and see how good Jessica looks and see how well they are doing.  Skyler loves her so much and couldn't stop talking about her when they left.

Friday, December 9, 2011

I love this time of year and its even more special this time around because we get to celebrate in the comfort of our own home.  I love decorating for the holidays and one of my favorite part of Christmas is putting up our tree.  Skyler also loves to decorate and finds so much joy in picking out all the decorations so I let him chose everything.  This year Skyler gets so excited when he sees anything gold.  When we go to the store and he spots something that is gold (like a shiny gold purse or a piggy bank) he yells "Yay its gold for childhood cancer!"  He really does believe that everything they make that is gold is specifically made just for bringing awareness to childhood cancer.  So this year when I asked him what kind of tree we should do I wasn't surprised when he told me he wanted a gold one for childhood cancer.  He helped me pick out all the gold ornaments and ribbon and put everything on the tree by himself.  It was so fun to watch him as he decorated and I couldn't help think back to where he was this time last year, laying in a hospital unable to move or talk.  It brings tears to my eyes everytime I think how far he has come and it makes me so much more grateful for the little things that we have.

Tuesday, December 6, 2011

Line attempt number two was a success.  We went early yesterday to fluoroscopy where they started an IV in his hand so they could sedate him. Skyler did great and was so brave.  I think it helped too knowing this would be his last IV start (hopefully).  To sedate him they used versed and ketamine.  I hate ketamine because it makes their eyes move back and forth really quick and they still look awake.  Even though he has his eyes open and he looks like he is looking at you he is in lala land and not aware of things.  Also the versed helps him to forget everything that happened.  I was able to go back with him and hold him when they gave him the drugs.  They gave him versed first to relax him.  I love this drug, and by the goofy smily look on Skylers face he like it too.  I layed him down and he just kept laughing and smiling at everything.  He kept saying how funny I looked and that all the big machines in the room were so silly.  I left as they gave him the ketamine and went to his happy place.  They placed the picc in his right arm.  Its alot lower on his arm than he had before and it dangles down lower than I wanted it to but it will just take some getting used to like everything else.  We have been able to wrap coban around it so it helps secure it and keep it out of the way.  The surgical team also came down while he was out and changed his dressing on his chest.  She removed all the gauze and had to put more in because it was deeper than she wanted it to be.  When we were at clinic today and he had the sleepy medicine she came back down to look at it again.  She said it looked so much better and was able to take the drain out.  The wound team is going to follow us until it is all the way healed.  Just like with his wound on his bum I have to pack some stuff down into the wound everyday so it will heal from the inside out and not leave any pocket of infection.  They also started him back on vancomyacin, an IV antibiotic.  Instead of the oral antibiotics they put him back on this for 10 days now that he has a line.  I have to give it to him every eight hours.  Considering all that has happened he is doing so well.  He looks great and has a great attitude about everything.

At clinic today he had vincristine and was also scheduled for an LP but the doc decided to hold off on the back poke so we dont introduce any new source of infection.  He said he would probably be fine but he also said if anything is going to happen it will happen to Skyler.  So instead of a back poke they changed his chest and picc line dressing.  Im so grateful that they were able to do those both while he was sleeping so I didnt have to tonight. 

He did have a reaction to the vancomyacin today that they call redman's.  His face and neck went all red and he started itching all over.  The itching isnt common with this but it went away when the redness went away.  We just have to slow down the infusion next time and he should be ok.  Its been a long and exhausting day but we got alot accomplished and dont have to go back to clinic for another month.  I love that I can say that.

I didnt take alot of pictures the last couple of days but here is the new picc.  I just hooked him up to the vancomyacin in this picture.

Sunday, December 4, 2011

Skyler is doing so well.  Luckily we caught the infection early before it made its way into his bloodstream.  It was just localized in the tissue surrounding the sites.  I thought the redness what just a reaction to the steri strips that they placed on there, kind of like the reaction he had when they took out his chest tube.  I wouldnt have taken him in if he hadnt have woken up that morning with the whole left side of his face completely swollen.  I knew right then something was wrong and took him to the E.R.  They confirmed that it was infected and that it would have to be removed immediately.  They also did an ultrasound of the area and his neck and found a blood clot on the line. Thats what was causing his face to swell.  But with them removing the line they said that would most likely take care of the blood clot without having to use blood thinners.  A couple hours later Skyler was back in the operating room again to remove the brand new port. 

I sat in the waiting room and bawled.  Its the worst feeling to know that the decision you made is what's causing your child pain.  I beat myself up for awhile but then I realized that if I had to do it all over again (not knowing the outcome of course) I wouldnt change a thing.  I did my homework and had consults with multiple doctors, and the surgeon and have talked to many moms of kids with ports.  I also couldnt keep torturing child with dressing changes every four days if I had the option not to.  I also wanted to give him the best opportunity of living as normally as he can these next three years and be able to bath and swim again.  Obviously it didnt turned out how I wanted but thats one thing I have learned in this world, nothing is for certain.  You have to make the best rational decision you can and pray for the best.

Skyler woke up from this surgery in a lot less pain this time.  He actually didnt need any sort of pain medicine for two days.  They admitted him to ICS and started two strong IV antibiotics.  This admission was so different than the others that we have had.  Since the infection wasnt in his bloodstream he wasnt having any fevers and was doing so well.  For some reason I wasnt worried, I had a calm feeling the whole time (which is something so new to me in the hospital) and we just had fun.  We saw nurses that we love and I was able to talk with other cancer moms that I have come to know.  We played hide n seek and made crafts.  The only hard part was with no line in his body that meant they had to start an IV in his hand.  He actually had three started because they kept going bad.  He also had to wake up to a finger poke every morning so they could do his labs.  By the end, the pokes were not a big deal to him anymore.  He said that he would much rather get pokes everyday than have a line in his body.  He thought it was so cool that he didnt have any sort of central line and asked me "So does this mean that Im a normal kid now?" 

They were able to send us home on oral antibiotics so he didnt have to stay for a week in ICS for IV antibiotics.  He has a drain in his chest and gauze still packed in there that I have to pull out everyday.  Each morning I have to pull out a half inch of the gauze and put new bandages on.  Tomorrow they will take the drain out and place a picc line in his arm because he has an LP and chemo the next day.  He has had plenty of piccs before but has never come home with one so it will take some getting used to.  We have learned to adjust to new things though and make the most out of what we have been dealt.  They will place the picc under fluoroscopy so they can watch on a screen where they are placing it.  An IV team could actually come in and do it in RTU with his LP, but with his history we decided to do it this way.  Its been a long week but it hasnt been that bad.  Im used to infections making him deathly sick so this infection has been ok to deal with.  That seems strange to say but I have realized that it could always be worse.  Thank you so much for all the kind words and concern, it means so much to me. I am so lucky to have such amazing family and friends!!

That is the drain in his chest and the gauze I have to pull out.  He now has some more battle wounds to add the many he already has.  Looks yucky huh?

I also want to say congratulations to my brother and his beautiful wife who had a baby the same day Skyler got his port out.  She had to undergo an emergency C-Section and the baby will have to remain in the NICU for a couple weeks because he was very early but they are both doing really well.  Jen and Skyler were actually in surgery at the same was a crazy day.  I am so happy for them and am so excited for this new addition to the family.  Little Ashton is absolutely perfect and so adorable!