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.

Skyler was admitted yesterday for another round of high dose methotrexate.  I wasnt as nervous going into this as I was last round because he did so well with it before.  Besides the mouth sores Skyler didnt really have any other side effects last time.  This time he has been extremely nauseous though even with IV zofran around the clock.  Other than that things are going pretty well.  He doesnt like that he has to get up every two hours to go to the bathroom, but thats ok things could always be worse.


I did talk to the infectious disease team today about switching antifungals and they did come up with another drug we could try again.  They want to switch him over to a drug they commonly use to treat fungus that doesnt cause fevers.  He has been on this one before but it made his liver enzymes shoot up really high.  They think he will do fine though because he was already septic when they used it before and his liver wasnt working properly anyway, so since he is in a different place they think he will do fine.  We are going to keep a VERY close eye on his levels and if they start going up then we will stop it.  Our others options are to either just stop his antifungals all together or to keep him on the one he is on already.  The problem with keeping him on the one already is we dont know for sure if this is what is causing the fevers and we dont want to mask any other infection with the thought that the fevers are just because of a drug reaction.  The problem with stopping it all together is we dont know if he will become neutropenic again with this phase and if he does he needs to be covered with something.  Something new I found out today is that no one really knows how long Skyler should still be on these antifungals.  They dont know if they are over treating or if he still needs to be on them for awhile.  I found out today that having the fungus engulf the liver and spleen and kidneys like it did is very rare, and they really dont know how long to treat it because people dont usually survive what Skyler went through.  This hit me hard and brought back all those emotions and the reality of just how sick he was.  I try so hard not to think about it because I usually break down when I do so this morning wasnt great.  But I did decide that we need to try this new med while we are inpatient and see how he does.  We can always stop it if we need to and the best part is it is oral not IV!!!  That means that if he does ok on this I dont have to hook him up at all.  Holy cow this would be so nice, its kind of hard to imagine but I love that thought.
                                Getting a push of Vincristine

Starting the bolus of Methotrexate

A nice syringe full of poison

After the bolus of chemo they start him on a drip of it for the next 23 hours.  Its light sensitive so they have to cover it with a brown bag.  The bag next to it is some of the LARGE amounts of fluid he gets

The barf bucket has become his best friend again

The Vincristine makes his legs hurt all the time so grandma was nice enough to give him a good leg and foot massage.

He was able to have one of the therapy dogs come today.  He loves these dogs and he loves to feed them.

Love this smile!

And this one.  Even though he doesnt feel good alot of the time he still has been a happy sweet little boy.  And if you notice in this picture he lost his first tooth sunday!

He even got a dollar from the tooth fairy.  My baby is growing up! (please disregard the mess on my bed I was packing to come here)

I was looking through videos today and saw a video of Skyler a few years ago.  I couldnt believe at how well he was moving and dancing around.  Its such a big difference from where he is at now, I guess I kind of forgot how things used to be.  But then I came across one of him after he was really sick and was finally able to come back up to ICS from his long stay in the PICU,  and he has come so far since then.  In this video I remember being so amazed and so proud that he could hit a ball.  Then I took a video of him today trying to "run" and Im so proud of how far he has come.  Its definitely different from where he was before cancer, but its where we are at in life now and Im so proud of him. 

                                       Skyler before cancer

Skyler during physical therapy after coming up to ICS.  This brings tears to my eyes because him being able to do this amazed everyone.  He is one strong little guy.

Skyler today!

Skyler had another hearing test this morning.  I was actually looking forward to this appointment all week.  I dont know if his hearing has gotten worse this past week or if its because I am more aware of things, but I have to basically yell and repeat myself several times in order for him to hear me.  I know I was pretty bummed out to hear that Skyler may need hearing aides for the rest of his life, but I think its because I was caught completely off guard with this news.  Whenever Skyler goes in for tests or scans I always mentally prepare myself for any news I might hear, good and bad, but for this news I wasnt prepared at all.  I have come to terms with everything and am actually really looking forward to getting Skyler the help he needs.  I feel really silly for being upset especially when I heard the news about Daniel.  We are actually very blessed in how things have turned out for Skyler because I know how bad things could have been.  Having to wear things on his ears is nothing compared to what could have happened to him.

For the test Skyler went into a hearing booth and had to put head phones in his ears.  They would play different tones and pitches of sounds and when he heard something he had to put a block on the board.  He was pretty inconsistent in what he could hear but from what they got he has significant hearing loss.  Because he was inconsistent in things though they are going to have to do another test in which he will be sedated for.  They want to be really accurate in the results so they can program his hearing aides properly, so we will be doing this test sometimes next week when we are inpatient.  Im not sure the name for the test, the only thing I can remember is something brain something ( haha, I know not much help) but they will sedate him for it, put electrodes on his head and measure brain waves when they put sound into his ears.  At this time they will also fit him for the hearing aides because I know he will not tolerate someone poring mold into his ears while he is awake. I have sat down and talked to him about this several times so he is prepared for the hearing aides and understands what is going on.  He is actually excited that he will be able to hear better again.  Last night he said "The people that cant hear very well sometimes think you are saying one thing but you are actually saying something different.  Im like those people." 

This was the display of hearing aides in the doctors office.  He will be able to design his own and make them cool.

Here we are in the hearing booth about to start the test.

My mom took this from outside the booth where another lady was making the sounds go into his headphones.  He was not very excited about doing this.

Afterwards he wanted to have a little "picnic" on the bridge that connects Primarys to the Moran Eye Center.  We did this before when we were inpatient and he loved it so we did it again.

Our "picnic" consisted of candy from the vending machine.  I know super healthy huh?  But he enjoyed it and thats all that matters.  This is his candy sandwich he was excited about making.  You cant see it very well in this picture but he is started to grow back his eyebrows and eyelashes.  He also has alot of peach fuzz on that cute head.  I have mixed feelings about this because the hair that grows back in is so weird.  Its like baby hair and it wont do anything I want it to do, but it will be fun seeing him with hair again.

Here is just a few pictures from when we went to the park, he really wanted to collect pine cones.  He walked the whole time and bent down and picked them up all by himself, he collected alot of them too.  I was so proud of him.  This really wore him out though and he went and took a three hour nap afterwards.

Good news, we may have found the reason for Skyler's fevers....drug fevers.  We stopped all his antibiotics including his antifungal meds when we were in the hospital to see if these fevers went away, and on Saturday night through Monday evening he was fever free!  I had to restart his antifungal on Sunday and low and behold his fevers returned the next day, so the fevers are probably caused from his IV antifungal med Micafungin.  This was the result I was praying for so I am really happy this may be the answer.  Our oncologist is going to talk to the infectious disease team and see if they have an alternate antifungal that we can start him on that has less side effects but will still work just as well.  I think we will know Monday when we go back in for another round of chemo.  I honestly doubt there will be another one they can put him on because I think they already tried all of the "safe" ones down in the PICU.  Im afraid our only option right now is to leave him on this one and just deal with the fevers.  I dont like this option but he has to be on something while he is still getting these high doses of chemo, and this option is alot better than having his infection activate again.  I hate that he still has to deal with these fevers all the time because it makes him so miserable, but he and I both know it wont last forever so that makes it a little easier to cope. 
While we were at clinic he needed to get a blood transfusion because his counts were so low.  That explains why he has been so tired this weekend.  Its amazing at what a nice fresh bag of blood can do for these kiddos.  They immediately get their color and energy back.  I am so grateful for all you donors out there!

Now for some heartbreaking news.  My worst nightmare is coming true right now for a fellow cancer mom and her son.  The yellow ribbon my family and I wore on our shirts was for Daniel Allen, a seven year old boy battling a brain tumor.  On his routine MRI, the last one before maintenance, they found that his tumor has returned and is terminal.  This sweet boy has only two weeks to two months left on this earth.  Even though finances are tight, his mom and dad are taking him to Disney Land while he is still feeling well enough to go.  If you can please help this family make lasting memories with their amazing little boy before he returns to his Father in Heaven please do. 

Daniel Allen Family Fundraiser BAKE SALE

Location: LDS Church 7000 S. 2700 W. West Jordan,Ut

Time: ‎3:00PM Friday, July 15th

If you would like to donate you can with paypal through laniallen79@gmail.com

www.caringbridge.com/visit/Dan​ielAllen6

Skyler was able to come home on Thursday just in time for the CureSearch walk today.  I didnt think I was going to be able to take him but his counts were high enough today so he was able to come too.  The turnout was amazing!  I was so overwhelmed with gratitude as I saw people arrive in their Team Skyler shirts.  It brought tears to my eyes to see the support that we were shown today.  It really is incredible to me that people I havent even met before were so willing to take the time out of their busy Saturday to come and support Skyler.  I wish I could have gone around and talked to and thanked more people, but Skyler was not in the best mood this morning.  Due to the high doses of Methotrexate he was given his whole entire mouth is now covered in mouth sores and he is in so much pain with it.  I gave him some pain meds right before we left which usually makes him really happy but it gave him the opposite effect this morning.  Also because he hasnt been able to be around alot of people this past year I think it made him nervous when there were so many people at the walk.  When we got home though and it was just the two of us he did say it was really cool to see everyone with his face on their shirt.  I thought it was pretty cool too.  I really want to thank everyone from the bottom of my heart who donated and came to the walk today.  It means so much to me.  You all are so amazing and really did make a difference in our fight against childhood cancer.  The goal for the walk this year was $50,000 but we ended up raising over $70,000!!  Yay!  For being the first ever CureSearch walk here in Utah this is so amazing.  I have the best family and friends ever.

Go Team Skyler!

Look at how many wonderful people came out to support Skyler today.  I love this picture, its so nice to know that we arent alone in this fight.



Here are more pictures of the wonderful people who came out to support Skyler today.  Thank you!

Skyler was able to get a kitty balloon animal and wouldnt let it out of his sight.  He loves balloon animals and this was his first time in a long time that he was able to get one.

My family wore ribbons in honor of Skyler's cancer buddie Daniel who couldnt make it today.  We love you Daniel and Lani!

TEAM SKYLER

This is Brinley, a cancer survivor.  She totally kicked cancers booty

These are all the people that came today from my mom's work.  I seriously loves these guys.

                 Some of my wonderful family

      Even little guys came out to support us today.  How cute is he?

 At the ceremony they released balloons in honor of those we have
                                   lost to this horrible disease

This was a hard yet touching moment for me.  There are too many children who have earned their angel wings too soon

At the ceremony they also gave out medals to the children who have fought and are fighting their battle with cancer.  Skyler was really excited to get his medal and wore it the whole time.  As soon as we got home he put it away in a special spot in his room.

Way to go Skyler!  I am so proud of you my little hero.

Look at all those cancer fighting cuties.  What a strong and courageous group of kids!  Everyone got a bandanna in different shades of green depending on where they are at in their treatment. 

 

Thanks again to everyone who supported us today and to those who have donated to this great cause.  There will be a day when we will have a cure for childhood cancer.