Look what Skyler got today.....

......a new feeding tube!  I honestly never thought I would be so happy for Sky to get one.  Its actually more of a feeling of relief instead of a happy feeling.  It has been so hard lately to get him to eat anything because everything tastes so yucky to him from the chemo and he is losing too much weight.  Everytime I see him without his clothes on its like a slap in the face, he is just stick and bones and I just couldnt wait until next week for his other procedures to get one placed.  Instead of having them place a NG I took him to radiology to place a NJ which goes into his intestines instead of his stomach.  He usually throws the NG up within a couple of days and I want this one to stay in for awhile.  He was so scared but did great considering that it took them forever to get it into the right spot.  His dudeum (dont know if I spelled that right) is shaped like a cork screw so the doc had to keep pulling it back in and out of his nose several times before he got it in.  Skyler kept screaming "why in the world do you keep pulling it out?!"  He was convinced he was doing it wrong because it normally doesnt take that long so he kept telling (well yelling) at the guy to do it right.  I have to admit it was a little funny.  He has done this so long that he knows when things arent right.  Once we left the hospital he perked right back up and even said he was glad it was in.  I think I will sleep alittle easier tonight knowing he is getting the nutrition he needs.

Well Sky didnt make counts today so they are giving him another week at home for his bone marrow to recover.  Even though its kind of a bummer to get delayed, I have one HAPPY boy on my hands today.  He is beyond excited that he gets to stay home another week instead of being admitted and getting his back poke, so for that I am really happy too!!

Everyday since Skylers fevers have returned they have been getting higher and higher.  I have called the on call oncologist everynight about them and they told me that if he started acting sick or looking different then bring him to the ER.  Usually if a cancer child has a fever above 38.3 then they know to automatically bring them to the ER.  In Skylers case since he is so different than an average child of his diagnosis and since these fevers have been going on for so long they basically let my use my own judgement on when to take him in or not or to just to dose him with Tylenol at home.  To me he hasnt looked "sick" but the past couple of days he has been throwing up constantly and his fever got high last night so I gave him Tylenol to help him through the night and then took him into clinic today.  The doc just flat out told me that Skyler has every single one of the doctors there baffled.  They just dont know whats going on with him.  They have tested him for everything imaginable and everything keeps coming back negative.  Today they drew some cultures again to see if anything is growing in his line and gave him a dose of Rocephin, which is a broad spectrum antibiotic just to cover him incase anything is growing.  They also drew some labs checking for any kind of fungus that could be active again.   His ANC and white count have come up so they didnt admit him, but tomorrow we are scheduled to be admitted to start another round of HD MTX.  He is also scheduled to be sedated for a lumbar puncture as well as the ABR test (the hearing test and to be fitted for his hearing aids)  However, his platelets were still low today, so if they drop anymore by tomorrow then they will cancel everything and give him another week for his bone marrow to recover.  At this point Im feeling overwhelmed and confused.  I have this uneasy feeling that something is just not right.  I really hope Im wrong about this.  I just wish I could get a clear cut answer and then a plan to make it better.

The fevers have returned....

Today we headed up to clinic for a follow up appointment for fevers and for a liver panel.  Both are great!  I havent had to give Sky Tylenol since Saturday night, this is the longest he has gone without it for months.  He will still get warm and will get up to 38.2 but they dont consider that a fever until it gets to 38.3.  At least its alot better than being in the 40's.  Also his liver enzymes that we were worried about getting too high with this new oral antifungal are hanging in there.  They are still elevated but not to a worrisome level so things are headed in the right direction.  Its been so nice not having to hook Sky up everyday.  Its a new, much needed freedom and its been wonderful.  One thing I wasnt expecting was that his ANC dropped from 5.3 to .9  His platelets also plummeted to 12 and his hematocrit also took a nose dive.  I wasnt surprised by these two numbers at all though because he has been bruising like crazy and he is so pale and tired all the time.  We will head back up to clinic tomorrow for a blood and platelet transfusion.

We also met with a physical therapist to assess Skyler's walking and to help us get him back to where he was before diagnosis.  He is still extremely weak and stiff.  She gave me some exercises to do at home with him and also a physical therapist will come to our house three times a week to work with him.  Another factor into some of his weakness is from not eating enough.  He has been really nauseous lately and is starting to get mouth sores again so he is starting to lose even more weight.  He is just stick and bones so I have decided to have them place a feeding tube on Tuesday with his LP and sedated hearing test.  Hopefully he wont throw this one up so we can get some meet on his bones.

Skyler was able to go to the wishing room today to declare his wish!  He has been looking forward to this day for awhile now.  We have had a time to go a couple times but had to cancel due to fevers and admits but he was well enough to go today and it was awesome.  I love Make-A-Wish!  He was really excited to bring his key with him to unlock the wishing room and had it in his hands all day.  First we got a tour of the place and they let us know a little about how it all started.  Then we went out to the wishing pond and we all got to toss in a star coin and make a wish.  Then we went up and all played the wishing game where we took turns and answered questions like:  If you could be anything what would it be?  If you could go anywhere where would you go?  If you could meet anyone who would it be?  They do this so they can understand what the wish kid wants.  They really wanted Skyler to be the one to tell them what he wanted and what things he liked without influences from others.  They really are about making HIS wish come true.  His number one wish he wished for was a game room like Chuck E Cheese.  He LOVES games and he LOVES Chuck E Cheese.  His second wish (in case they cant make his first wish come true for some reason) is to go to Chuck E Cheese.  When I first starting talking to Skyler about Make-A-Wish and what it was he had a completely different wish.  I tried explaining to him that he gets to have a wish come true and asked him, if you could have anything or do anything or go anywhere in the whole entire world that would make you so happy what would it be?  He responded "To not be sick anymore"  This broke my heart, and everytime I asked him he would say that and that he wished he didnt have cancer.  Finally one day he thought it would be so cool if he had a game room in our house like at Chuck E Cheese, but that night as he was laying in bed he said " Mom I changed my mind about the game room, I really want my wish to be that I dont have cancer anymore so I dont have to do scary not fun things anymore"  Lets just say I spent awhile quietly crying after this.  He is super excited about these wishes though and I really hope they can make it happen for him.

After the wishing game we headed over to the wishing room where he could use his key to unlock the door.  This room is awesome!  It has lights and music and in the center is the wishing wizards hat where he puts his wish.  First we all went around the room and read to Skyler what our wish would be for him.  This was very emotional for me and when it got to my turn I totally started crying (very embarrassing)  Then he was finally able to put his wish in the hat.  I love that there is an organization like this that brings a little bit of magic and hope into these kids lives that are faced with a life threatening illness.  After all that Skyler has been through he really needed something like this to make him excited about something and to bring some happiness to his life.  I am so grateful that we were able to go and do this today and for all my family that came out to support Skyler. 

                       This is Skylers star that was at the entrance

Here Skyler is getting his coin to throw in the wishing pond

Throwing in his coin

This is the wall of some of the other wish kids and what they wished for.  There were alot of Skylers cancer buddies up there and also our special friend Emma from the PICU

This was Sky relaxin in his little chair while playing the wishing game.  I love this picture!

When it came to Sky's turn to answer the questions he was too scared to say it outloud so he whispered it to me and then I told everyone.

This was taken in the Wish Room right after he put his wish in the wizards hat

My awesome family

These stars represent all the wish kids that have come here.  Skyler will get his star when his wish is granted.  Its awesome to look up and see all of these stars but its so sad at the same time because that is way too many kids that have had to suffer.

After the wish room we went down and had some cookies and they gave Skyler an awesome bag of presents that were so perfect for him

Here is a link to the part of the wishing room where we went around and told Skyler our wishes for him.  I cut myself out because it was embarrassing watching me cry but my wish for him was that he wouldnt have to do scary things anymore and that he can get his game room.  There are also a couple other videos of the wishing room.

   http://www.youtube.com/watch?v=vovDWcWHF00

We will be going home tomorrow.  I cant believe how fast this round went by.  By far this round has been the easiest for Skyler (knock on wood)  Its so nice to be able to come to the hospital just for chemo instead of fevers.  Of course he is still having fevers but those arent anything new and they dont really make Sky feel too horrible.  He just gets really cold when he is about to spike.  I know it must not be too comfortable for him but he doesnt complain.  Hopefully since being on this new antifungal these fevers will resolve by Saturday or Sunday.  If not, well I dont want to go there yet because we dont have a plan yet if thats the case.  As for the sedated hearing test, that is scheduled for the 2nd of August when we come again for another round.  He is scheduled that day to be sedated for a lumbar puncture so we are just going to do them both at the same time.  I really wanted it done while he was here in the hospital just to get things rolling but I guess he cant be put under when he is on bi-carb.

Things have been going really well this stay and Im so excited to be able to bring him home off all IV meds.  It will be so weird because he has had to be hooked up everyday for almost a year now, but it will be amazing.  Its one step closer to a normalcy I have been craving and that Skyler deserves.  I am so happy for him that he wont have to carry around a pump all day.  We have also taken him off a couple oral meds as well so thats exciting too.  Even though its taken alot longer than anticipated, maintenance is getting closer and closer.  We are almost there!  Skyler keeps talking about all the things he wants to do once he finally gets to maintenance and Im so excited to be able to let him do those things.  Of course we still have to be really careful but since he isnt going to be taking heavy duty chemo that will drop his counts we can do a lot more.

Skyler's uncle Ty came up to the hospital a couple of times this week which made him so happy.  Skyler says Ty is his bestest buddy and he just lights up when he is around.  I wanted to share a couple pictures because I thought this was so sweet.  Skyler has been so excited about his dollar that he got from the tooth fairy.  He keeps thinking of all the things that he wants to buy with it, but today he had me go get it out of his bag and he gave it to Ty.  He loves Ty so much and he just wanted to make him happy so he gave him his precious dollar.  It was so cute.  You can see in this picture when he was surprising him just how happy he was to give it to him.

Its moments like these that melt my heart.  He truly loves to make people happy, and he is always thinking of things he can give away to people to make them happy (especially his uncle Ty)  I am so grateful that he takes the time to come play with Skyler and bring a smile to his face.   He is such a wonderful male figure in his life.