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!

Tuesday, November 29, 2011

Skyler is doing surprisingly well and we should be headed home in the next day or two.  This is definitely not the outcome I had hoped for but I still dont regret the decision to try and place a port.  As hard as things seem somedays I know that things happen for a reason.  Our trials make us stronger and we arent given anything in life that we cant handle.  Obviously Skyler is a STRONG kid and as hard as it is for me to accept, we have faced challenges that are going to strengthen us and make us better.  If this hadnt have happened I wouldnt have been able to have the conversations I have had with some amazing women, I wouldnt have been able to be here on a huge milestone day for a fellow cancer friend, and Skyler wouldnt have learned that pokes arent as scary as he thought.  He has had worse happen to him and I have been able to see the proud look on his face after he is done with each and every poke this week and know that he can do anything.  I dont know how I got so lucky to have this sweet child as my own.  He is truly amazing and I love him with all of my heart.  One day I hope to be able to be as strong as he is and to carry on in life the way he does amidst the challenges he faces everyday.

Sunday, November 27, 2011

Im too exhausted to go into too much detail, but we have been admitted to ICS at least for a couple of days.  Skyler has a blood clot in his neck and his brand new port is infected.  Yep infected.  (Insert a couple bad words here)  I heard those words again today that Skyler is famous for "Wow this normally doesnt happen."  Ummm...thanks doc, just what I wanted to hear. We just got back from surgery to remove the port and they have started him on a couple strong antibiotics.  One of them being the one that caused his hearing loss. 

I'll post more when I can actually think straight....

Thursday, November 24, 2011

Happy Thanksgiving everyone!  I have so much to be grateful for this year,  but the one thing that I am grateful for the most is that I was able to spend this Thanksgiving at home with Skyler.  I cant help but think back to where we were a year ago today, sitting in the PICU hoping that my baby would get better.  This year he is walking, talking, running around and playing, and even able to eat Thanksgiving dinner with us.  We are so blessed! 

                This is how Skyler celebrated Thanksgiving last year

Today I am also grateful that Skyler's surgery yesterday went well.  It took about an hour and the surgeon said he was able to place it in the same vein his old line was in, which is good.  Skyler and I were both pretty nervous about the whole thing but I was doing better than I thought I was going to be up until I had to say goodbye to him.  No matter how many times you do it, it never gets easier watching your child being taken away in the arms of someone else while he is crying out for his mommy to save him.  It feels like a swift kick in the gut and heart every time.  It hurt worse when he told me later that when they took him back to the room to give him his sleepy medicine he was calling me to come help him but I never came.  Talk about heart wrenching.

When he started waking up in the recovery room he was in so much pain.  I have never seen him in that much pain after a surgery before.  The nurse had to keep giving him more and more doses of pain meds but it only took the edge off, he was still hurting so bad.  We actually had to be moved to another part of the unit for a couple more hours because he was still in too much pain and  he wouldn't drink so they didn't wanting me taking him home yet.  The nurse finally got a one time order of a stronger pain med and that seemed to calm him down more.  Also, if you remember from the beginning of diagnosis Skyler has a bad reaction to EKG patches.  He gets such severe burns from them that they listed them as an allergy so he wouldn't get those put on him again.  Its in his chart and on his bracelet every time, and I also told this to the anesthesiologist before surgery so she wouldn't use them.  I told her he does great with the infant leads so that's what she needed to use.  You can imagine the anger I felt when I saw two burns on his back from the EKG patches when he woke up.  She was trying to place the blame elsewhere but the truth is she just spaced it and made a mistake.  I was fuming inside but wasn't able to show just how angry I was because Skyler needed me to be there for him.  Luckily the wound team knows him really well and they were able to come and get a script for the cream that worked last time on the burns.  I have been slathering that stuff on so thankfully they haven't gotten too bad yet.

I don't know why, but I really wasn't expecting him to be in that much pain afterwards.  I thought it would be much easier, so I promised him that we could go to Texas Roadhouse for dinner that night.  But after seeing how miserable he was and that his bandages were still soaking through with blood I for sure thought he would have forgotten about it or want to go when he felt better in a couple of days.  I was so wrong.  We were able to leave the hospital at four and we went directly to Texas Roadhouse and met my parents and Ty for dinner.  He was in so much pain but wanted to go so bad that he said he was fine, even though I knew he wasn't.  It just shows how tough this kid is.  The last thing on earth I would be up to doing after surgery is going out to eat, but nothing can keep this kid down.  He is my hero and such an inspiration to me.  On the way home I was so exhausted and had the biggest headache and was about to start complaining, but I just had to take one look at Skyler and that shut me right up.  I still learn valuable lessons from him everyday.

I have been keeping up on the oxycodone every six hours and today he seems like he is doing much better.  It's actually alot less bruised looking today than they told me it was going to be so that's really good.  He also told me today that he is so glad he has a port now.  I pray the sites will heal up nicely and that he will be able to take a nice long bath (without Saran wrap) in one week!

Still trying to wake up

He was so sad and in so much pain here.  He had huge crocodile tears.

This was after that final big dose of pain medicine when he was actually able to calm down.  He didn't want his usual slushy and crackers, he wanted a candy cane.  You can see that there are steri strips on his neck where they made an incision and some on his chest right where they placed the port.  That square bandage is from where they took out his line and its already saturated in blood.  They had to place a bigger bandage over it but it still kept bleeding through that.  It finally stopped bleeding all the way when we got home from dinner.

This is when they took him to the other part of the unit to recover.

Finally ready to go home, but still not feeling great.  The stuffed animal is a kangaroo that he got from a sweet friend from Australia.  The reason he brought it with him is because it has boxing gloves on and he said it could punch all the bad guys away and his cancer.  We also made each other little paper hearts that said I love you and I'm here with you and gave them to each other to bring with us.  He put his in his kangaroos pouch and I kept mine in my pocket.  That way when they had to take him back to give him the sleepy medicine he could hug his kangaroo and pretend it was me giving him a hug.  He told me that when he was screaming for me to come and I didn't he hugged his kangaroo and it helped a little.

Thank you so much for all the prayers.  I hope you had a wonderful Thanksgiving!!

Tuesday, November 22, 2011

After a week of no chemo Skyler's ANC has come up to 2.0!  Thank goodness.  It's not a great feeling knowing he has no immune system and that he is also off his antifungal.  He did great though which is such a relief.  Since his counts have come up he is scheduled for surgery tomorrow to finally place the port.  We both are pretty nervous and both for different reasons.  Please pray everything goes just right tomorrow and we wont have any complications.  I better go to the store and stock up on Excedrin tonight because I'm sure a giant headache is in my near future.

Thank you so much for the continued love and support.  I'm still trying to heal from everything that has happened and knowing there are people that care for Skyler and are praying for him helps me so much in this process.

Wednesday, November 16, 2011

Change of plans.  The surgery had to be cancelled because Skyler decided to go neutropenic on us and they wont operate on someone with no immune system.  Over the weekend I knew he needed blood because he has been so tired and pale and he has also had bad headaches.  I called in and had them see us yesterday to see what his crit was and to do a type and cross.  He definitely needed a blood transfusion.  His platelets were also low but not low enough to transfuse yet.  They ordered the blood last night and we came in this morning for the transfusion.  Before we went into clinic we went to had a consultation with the surgeon to see where he could place the port.  He decided he could go through the same vein his dialysis catheter is already in, but just place the entry site a little bit toward the center of his chest so its not in the same place as his line is now.  They will also make an incision in his neck because they have to tunnel a wire through the vein first so it doesn't collapse when they put in the new line.  We cancelled the surgery tomorrow but rescheduled for next Wednesday hoping his counts will be up by then.  Dr. Lemons also had us stop all oral chemo at home for this week and we will recheck his counts again on Tuesday to see if we are good to go for the following day.

His ANC has dropped so much because they upped his chemo last month and I guess it was too much for his little body to handle.  I have been told it takes a couple months or so to find the right dose that will keep his counts in the range they want it.  Every kid is different so it takes a little bit to find just the right dose.  I'm actually grateful we went into clinic today.  Not due to the fact that Skyler needed blood but it gave us a chance to talk to the child life specialist about him getting his port.  She showed us an actual port that they will place and gave him a doll that had one in it and showed him how they access the line.  He has been so worried about this and has wanted to talk about it several times a day because he is so scared, but after talking with Rochelle he felt much better about it.  She even left us with all the supplies to take home so he can practice accessing his "cancer friend" all by himself.  This is like the port that they are going to place.

This is Rochelle showing him the steps they take to access it.

As soon as we got home he drew a face on his little friend.  He said he made it a grumpy face because getting a port accessed would make him grumpy too.  He also drew a heart on him.  So cute!

This is him accessing his friend all by himself.  That's the alcohol he cleans him with first.  He was actually really good at it.  When he was all done he said "I could totally be a doctor"

This is the part where they poke him to access the line.  Don't worry we took the actual need part out.

Putting the bandage on.

I let him hook up an old line of his and fill it with water so he could give him some chemo

This is such a refreshing site to me!  That's another weird thing cancer does to you.  A big bag of blood doesn't make you gag it brings a big smile to your face because you know its going to give your child his energy back and give him some color.

After Skyler was done pretending to access his doll he still wanted to play with it, so I let him go through all of his old medical supplies I don't use anymore so he could find some doctor stuff to play with.  This is a video of him taking care of his little friend. 

(I wrote this post last night so its a day off)

Sunday, November 13, 2011

I cant believe another month has already come and gone.  This last week Skyler had his monthly clinic visit and it was also his month break from his dreaded back pokes, so all he had to do was get a quick push of Vincristine.  We were in and out in under an hour, which is really quick when it comes to clinic.  Even though I knew this would be a short visit I also knew I was going to have to make some tough decisions so I wasn't looking forward it.  Skyler has been on Micafungin everyday for the last year.  This is an IV antifungal medication that he has been on to clear the infection and to prevent it from coming back.  We have no real evidence that the infection is still active even though his liver is still engulfed with calcifications from where the infection was.  This is how his liver is going to look for the rest of his life unfortunately.  At least it isn't active.  We have been talking about when to stop this medication for awhile now and we decided that a couple months into maintenance would probably be a good idea because we aren't expecting his counts to drop too low anymore.  There isn't a specific protocol for this because kids with this type of infection usually don't survive.  Needless to say I have been very hesitant to stop this medication because it was this fungal infection that almost took his life, not the cancer itself.  They pretty much have left the decision up to me about when to stop it, and up until this last week I wasn't anywhere close to being comfortable stopping it.  But for some reason I felt ok agreeing to stop it this week and see how he does.  Dr. Lemons said that at some point we just have to bite the bullet and do it.  I have been a nervous wreck this last week but so far so good.  Please pray that this monster of an infection will stay far from Skyler and that it wont return.  That is a scary road that I don't want to go down again.

Along with stopping his micafungin I also made the decision to pull his dialysis catheter and place a port in his chest.  A port is a central line that most kids with his diagnosis have.  It is placed under the skin and into a vein that goes to Skyler's heart.  The first line he had was a port but it got infected when this fungal infection started.  Technically a port is less of an infection risk than his dialysis catheter because its on the inside of the body and is only accessed when he needs blood draws or chemo.  But I still associate infection with ports because we obviously didn't have a good experience with the first one.  However, since his treatment is so long a port makes sense because he wont have to do dressing changes every four days, I wont have to hep lock it everyday, and he can get wet.  So baths and swimming will become part of his life again.  Since I don't have to hook him up everyday, placing a port now just makes sense.  There is no need for that big line hanging out of his chest if I don't have to use it everyday.  I also have had this feeling lately that his line now needs to be pulled.  I'm not sure if its because I don't want to have to change his dressing all the time if I don't have to or if its my gut telling me this is the right decision.  All the docs at clinic agree that it is time, so we have an appointment with the surgeon on Tuesday and surgery on Wednesday.  I chose to have the same surgeon who removed his spleen to do it because he knows Skyler really well and he also knows that he has had a line in essentially every possible part of his body.  The appointment on Tuesday is to see if there is actually a place on his body to place a port due to the fact he has had so many lines.  If he can find a spot then we are good to go for the next morning.  Even though I feel that its time to do this I am scared to death.  This means another surgery and a new line that I'm going to have to get used to along with Skyler.  Its weird to say, but I'm going to miss his line he has now because I have used it so much that it has become become second nature for me.  It will be weird to have to get to know the ins and outs of a new line.  When they have to access the port they have to poke him and attach a line to it, when they are done they just take it out and send us home.  Since I like to do all his blood draws and be the one to work with the line I want to be able to learn how to access him as well.  It will be weird to have to stick a needle into my son but its just another thing in this cancer world that I will get used to.  Skyler is pretty scared about this whole thing and not a fan of getting poked even though they will numb it first so please say some extra prayers for him and for this surgery to go well.  He has been doing so good lately that the last thing I want to do is rock the boat and risk something bad happening again, but being able to stop the micafungin and be able to place a port is actually a good thing.  It means he is getting better.  He is finally entering into a place of this journey where things are finally starting to become how they should be.  A "normal" cancer kid if there is such a thing.

 Here he is getting the ever so fun vitals, height and weight done.  He has grown so much this month.  Everyone commented on how good he looked and how big he has gotten.  No one here has seen him this chunky before.

And of course he has to have some snacks before getting chemo.  I didn't get pictures of him getting it because I was so busy talking to the doctors.  By the time I was done talking he was all ready to go.  I love fast clinic visits like this.

Monday, November 7, 2011

Saturday was a day I will never forget.  I got to watch as my son's dream came true.  His wish was granted and he got his very own Chuck E Cheese game room!  I can honestly say that it was one of the best experiences of my life.  This past year Skyler has been through you know where and back.  Way more than anyone should have to go through in a life time let alone a 5 year old.  As a mother, all you want for your children is to make everything better for them and to have them live a long, happy, healthy life.  I've had to just sit back and watch as my child lay there suffering and fighting for his life, knowing that there was nothing I could do to make him better or to take away his pain.  So to witness his wish come true and see him truly happy was amazing.  I knew Make-A-Wish was awesome.  I've seen other cancer friend's wishes come true and the joy that it brought to their lives but you don't fully understand just how great they are until it happens to your child.  We had the experience of having the best wish granters!  Mandi and Stephanie are amazing and I know that they were put in our lives for a reason.  It's like they had known Skyler forever and worked so hard to make this room perfect for him.  I cannot imagine anything being more perfect.  The room is amazing!  They made everything just right, even down to the little details.  There was so much to look at that I kept finding new things every time I looked around. 

 We weren't allowed to go to the house on Friday or Saturday morning while they moved everything in.  They said we could come over at three o clock.  That was sure a rough morning because he just couldn't wait.  We finally left 45 min. early and just drove around to get him out of the house.  When we got there the wish granters and my family were waiting for us.  They had the door to the room wrapped like a present and let him open it up.  I was shocked at how amazing it was and was overcome with pure gratitude.  I had to try hard to fight back the tears that were trying to come out.  I didn't want Skyler to think I was sad, he still doesn't get the whole happy tears thing.  There was so much stuff for him to look at that he just walked around in silence taking everything in.  Chuck E Cheese and his girlfriend Helen were there waiting in the room too!  They also had a balloon artist come, so she was there making everyone the coolest animal balloons I have ever seen.  She seriously was amazing, I didn't know people could do that kind of stuff with balloons.  Skyler loves animal balloons so this was perfect as well.  He has a whole section just for his Wii and Xbox games with a couch that pulls out into a bed, game chairs, and a big TV.  On Thursday they took him on his shopping spree to Gamestop to pick out $400 worth of games.  He was in heaven and got 16 new games.  That night was pure happiness for him!  They also put a stand up arcade game in with 100 games loaded into it. Again, so perfect for Skyler.  They also put an old coke machine in there full of our favorite drinks.  They have a whole section just like at Chuck E Cheese with prizes to get when they get a certain amount of tickets.  They had lots of games for him to win tickets with and a whole closest full of board games.  I thought Skyler owned every board game out there but no, our wish granters were amazing and got all new games he hasnt played before. They also put an actual table with booths in there for Skyler to eat pizza at, and also got him an oven and pizzas for him as well.  They also put a popcorn machine, snow cone machine, cotton candy maker and ice cream maker in there too.  They even had a ton of cool Chuck E Cheese stuff in the corner.  Another thing he really loved was a pool table that turned into an air hockey table, chess, and checkers table. Im sure Im forgetting something because there is just so much stuff.  If you know Skyler this room is his heaven.  He said "Wow there is more stuff than I ever imagined in here.  It is so cool mom!"  Also for one of his back up wishes he was going to wish for a vending machine in our house so that coke machine was awesome.  He said "Mom they made both of my wishes come true!!"  His cousins were there and they played in that room for hours.  Skyler had so much fun and his face was just lit up with pure joy. 

Here we are at Gamestop with our wish granters as Skyler went around and picked out whatever games he wanted

Ty came along too.  He is Skyler's game buddy!

This is us just getting out of the car to see the room.  He was so excited!!

About to go downstairs to see it...I love this face.  Look at those chubby cheeks he has now!

Mandi and Stephanie wrapped the door like a present and on the bow it said wish big.  He sure did!

Yes, my mouth is really open that big...haha  Just wait till the next picture and see how big my eyes got.  Super unsettling to see but thats just how surprised I was.  Skyler is so happy!

I told ya....

This is the section of the room with all the prizes.  It was full of neat things that kids love and all labeled with how many tickets you needed to get.  It was so cute and one of Skyler's favorite things about the room.

I love these girls!  They will forever hold a special place in my heart.

The awesome coke machine.  They put root beer in there for Skyler and diet coke for mommy.  This is one of my favorite things!

We love Chuck E Cheese and Helen!  It was really neat that they came back to be apart of the reveal.

I like this picture with his Make-A-Wish shirt on.  He is just so handsome.

They put game chairs in there that were the perfect size for Sky.  They have speakers in them so he can hear the TV through the chairs. 

He has always wanted a pool table so he was really excited about this too.  This is so cute to me because his dad liked pool too.

And of course my brothers went straight to the arcade game.  As Skyler would say, that thing is sweet!

 This is his Wii and Xbox section.  The couch and chairs are perfect and I love that they hung pictures of Skyler all over the walls.  He thinks its so awesome that he has a bigger TV than me. They also put a race car in there with a spot for his controller so he can play mario kart in a race car. 

I love this booth.  When you are sitting there you really feel like you are eating out at a restaurant.  Great for Skyler because he loves to go out to eat but we hardly go anymore.  Now he has his own little restaurant space in his room and an oven for all his pizzas.

The kids love this stuff.  Its all prizes and things that you would get at Chuck E Cheese.  It has some really neat stuff in there.  They had so much fun looking through everything.

I like this picture of him playing with his cousin with their Chuck E Cheese hats on.

Our sweet balloon hats!

They also got him alot of comic books.  He has been really interested in these because he saw them on TV once but has never seen one in real life.  Im so glad they gave him these too.

These are all the board games they got him.  You should have seen the look on his face when he opened this up.  He was so happy!

They had popcorn all made for us from his new popcorn machine.

They also had this cute cake for him and sang Happy Wish Day to the tune of happy birthday. 

I love this as well.  They gave him a ton of goody bags to hand out to all of his friends when they come to play in his room with him.  The kids loved them and he is so excited to hand them out to all his friends.

Like I said, Im sure I missed something because there is just so much stuff in there.  The room is truly amazing and perfect in every way for Skyler.  I cannot express in words how deeply grateful I am to Make-A-Wish and our amazing wish granters.  They brought so much joy into a little boy's life that was in desperate need of it.  All he has wanted is to go to Chuck E Cheese.  He loves it there, but I cant take him.  So Im so grateful that Chuck E Cheese was able to come to him and give him a space that is just his.  A place where he can touch whatever he wants and not have to worry about germs.  We have already made such good memories in that room in only a couple days, and I know we are going to make so much more.  Not only was Skyler's wish granted, mine was too.  I get to see my son truly happy again!