Skyler's ANC today is 0.  Such a bummer.  His platelet count is also at 10.  Another bummer.  They werent joking when they said his counts would drop.  Im so scared right now thinking that he is at a greater risk of having his fungal infection activate.  For the most part he has done well in this phase considering where he has been and we are so close to maintenance, so it scares me having his counts so low.  Especially because of what happened to him last time his counts were this low.  We go in tomorrow for his last dose of chemo in this phase and also another platelet transfusion.  

This is how Skyler is feeling tonight.  He has a big headache that oxycodone wont even touch and has thrown up twice within the last thirty min.

On Friday our home health nurse came to draw an Amikacin level (one of his antibiotics)  I asked her to draw a CBC as well to see what Skyler's counts where.  I was worried his platelet level didnt come back up after his transfusion because his bruising is not getting any better.  Just as I thought they were 17.  I hear that transfusions are not uncommon during this phase so Im hoping they will start going back up when we are done with DI.  Also I was told his ANC would be dropping and boy were they right, he is neutropenic.  His ANC is now .1  A normal ANC is anywhere from 3000 to 5000, his is 100.  That means he basically has no immune system right now.  His ANC has not been that low since he was in the ICU.  The thing that scares me the most about this is that his fungal infection is more likely to activate again because he has no "good guys" to keep it away.  This could mean trouble so Im hoping his counts can recover quickly.  Its also no fun being stuck in the house because we have to stay away from crowds.  Thank goodness this phase will be over with this week!

A couple weeks ago Skyler and I were able to get our pictures taken by an amazing photographer, Jessie Oberg Photography.  I really wanted to get some more picture of him before his hair grew back because this is the last time he will lose it.  If you want to check some of them out just click on this link below.

http://www.jessieobergphotography.com/blog/

Skyler is now an official "Wish Kid"  A special package arrived in the mail today for him from Make-A-Wish.  Make-A-Wish is an amazing organization the grants wishes for kids with life threatening illnesses.  In the mail Skyler received a special key that will unlock the doors to the wishing room where he can go make his wish.  He has been so excited for this and cant wait until he can use his key to the wishing room.  We now will wait for our wish granters to contact us and then they will come and talk to him about his wish.  I am so excited for Skyler to take apart in this.  He deserves a little magic in his life right now.  This is something that he will be able to look forward to and something that will give hope in the midst of this battle he is facing.  I am so grateful for this organization and what they do for these kids.  No kid should ever have to go through what Skyler has gone through but to be able to take apart in this wish process because of the hard and scary things he has had to endure will be something special.  Something we will always remember.

I am way too exhausted to really write much about clinic today so Ill let the pictures do alot of the talking.

We first started off getting Skyler's weight, height, temp and blood pressure



He used to hate getting his blood pressure taken but he is so used to it now that its a piece of cake for him.

Then they sent us back to the infusion room to start platelets.  He looks zoned out in this picture.  We both did not sleep well last night but when he finally got to sleep I had to wake him up to go to clinic.

Thank goodness for platelets and the people who donate them!  Hopefully this transfusion will help his bruise situation, he is covered in them.

I had to bring a couple IV antibiotics from home so we had those running in his other lumen.  The whole five hours we were there he was attached to numerous things.  With blood products they constantly have to watch his vitals so he was hooked up to the pulse ox and blood pressure cuff the whole time too.  He got alot happier though when we were able to get back to a room and get him his veggies.

The happiness didnt last too long though because he had to get those nasty PEG shots soon after.  He also had to get chemo in his line (Vincristine) as well as in his legs.  He is so sad in this picture.

He really likes the warm packs after so that helped him alot.

His PA Robert came in and gave him a couple silver dollars after though which made him so happy.  Yesterday Skyler actually said hi to him by the elevators so he gave him a dollar then too,  he was so excited about it.  I am so grateful for Robert.  He really does care for Skyler and he will bend over backward for him.  I cannot tell you how much this means to me to have someone at clinic that really is there for us and listens to me, I mean really listens.

He also got blood today too.  We had quite the exhausting day today because we were there for so long and didnt sleep well the night before, but he got things that he really needed today which I am grateful for and I can already see a big difference in him.  

Next week is our LAST week in this phase.  Then we will start the next phase of high dose methotrexate (which will be inpatient) in two weeks.  This will be the last phase before maintenance.  As scary as this phase is going to be its one step closer to maintenance.  Yay!

We had clinic today and Skylers liver counts are good!!  What a relief I have been so worried about that.  His temp has still been hanging out anywhere between 99.5 and 100.0 the last four days, but he hasnt hit 100.3 yet (which they consider a fever) so thats really good too.  His platelets only went from 7 to  15 though so he will need another platelet transfusion as well as a blood transfusion because his hematocrit is also low.  He was scheduled today to get Vinc and the PEG shots but they didnt want to give him the shots with his platelets so low because of bleeding and they didnt want him getting hematomas.  The chemo and transfusions together will take over 5 hours so we decided to reschedule for tomorrow because I had to get him back home to hook him up to his antibiotics.  His mouthsores seem to be getting worse everyday and he has started vomiting alot but those are side effects we can handle.  They definitely arent fun especially for a little five year old but Id take that over liver issues again.  Thank you all for your prayers.  We are so blessed to have such a wonderful support system! 

As I was writing this I heard Skyler downstairs talking to his cousin.  He called up to me to help him up the stairs because its still extremely hard for him to go up the stairs by himself, and his cousin said "I wish someone would help carry me up the stairs."  Then I heard Skyler tell her "Dont worry, when you get cancer my mommy will help you too k"  It made me chuckle but its kind of sad at the same time.  Cancer is just his normal so he thinks its everyone else's normal as well.  He always asks me things like "When you were little and had cancer did your central line hurt too?" or "Were you so happy when you got your central line out and didnt have cancer anymore?"

Skyler is starting to get mouth sores from the chemo.  We have gone this long without getting any so I thought we got lucky and we wouldnt get them.  Boy was I wrong, his mouth is full of them!  The sad thing is they can go through his whole GI tract and out his bum.  It hurts him to eat and brush his teeth now.  He also looks really yellow to me today and has been hanging out with a temp of 100.0 for a couple days.  He also still is covered head to toe in bruises.  It just seems like all of a sudden the chemo is hitting his body hard.  He is looking beat up and just not looking good.  We have clinic again tomorrow for more Vinc and PEG shots.  Hopefully his counts come back ok and he doesnt spike a high fever again.  Im really worried that this oral chemo he is taking everyday is affecting his liver.  Please pray his liver hasnt taken a hit and that this low grade fever will go away.  Also please pray for our little cancer friend Andrew who is down in the PICU right now.  He is pretty sick and miserable right now.  I have a place in my heart for this little boy because we have been there and I know how hard this is.  Please pray his little body will heal and he can get back up to ICS to finish his last round of chemo.  Thank you 

Tonight we found ourselves up in ICS so Skyler could get a platelet transfusion.  These past couple of days he has been bruising like crazy, and then yesterday when he fell off a chair he got the biggest bruise and lump on his arm.  At first I thought it was his bone sticking out because it was so big but it end up just being swelling.  I called clinic and they said to mark it and ice it for a half hour and see if it helped the swelling, if it didnt get any bigger we were ok to just watch it instead of coming in.  Thankfully it didnt spread and we were able to avoid another hospital visit.  Today, however, was a different story.  He woke up covered with petechiae.  These are little red dots on his skin caused by low platelets.  He had them when he was first diagnosed and then was covered in them down in the PICU.  He hasnt had them for awhile so I knew he was down in the single digits.  He also got a bloody nose for no reason, also a sign of low platelets.  His platelet count ended up being 7 today.  A normal count is anywhere between 150 and 400.  They ended up admitting us, but it was nice going in knowing that we were only going to be there for a couple hours. 

This week has been hard.  Tanner, a 19 year old boy from our cancer community passed away.  Although I have never met him personally I have followed his blog closely and his passing broke my heart.  Also another young man with cancer was put on hospice, and another little boy who is on his last round of chemo is down in the PICU now.  It just seems like so much hurt and sadness has been happening in our little cancer community.  My heart just breaks for these families.  Skyler is doing well right now considering where he has been that sometimes for a brief moment I forget how bad it was and can be, but when I hear about these sad stories and see Skylers name in the column on others blogs under fellow cancer fighters reality sets in and those raw emotions come back.  For the most part I havent been able to forget that cancer is apart of our lives.  Skylers crazy IV med schedule has taken a toll on us.  It seems like I am always hooking him up to something.  We only have a few hours out of the day where he is unhooked and we can get out of the house.  It also scares me because the more I access his line the greater the infection risk, and I am accessing his line ALOT.  We are going to keep on this schedule until the end of this phase and then start tapering off.  The end of this phase cannot come soon enough!  Overall though Skyler is doing well.  This is something that I dont take for granted because I know how bad it could be.  He has started getting mouth sores from the chemo, but he still hasnt thrown up at all.  He is taking oral chemo everyday and for the last 4 days I have been giving him IV chemo and he still hasnt thrown up...very impressive.  Even though there has been alot of sadness that comes with cancer, there has been alot of good as well.  Today one of our little cancer friends received his LAST dose of chemo!  I am so happy for his family and look forward the day when Skyler will receive his last dose of chemo.  As Skyler would say, that will be a happy day!

 This was after changing Skyler's central line dressing.  Its a sterile procedure and Skyler absolutely hates it, so Im greatful when I have a helper.  I have to keep my hands and the and the things Im working with completely sterile so its much easier when Skyler isnt screaming and moving around.  This time my brother Ty helped me, he always helps take Skylers mind off the fact that Im srubbing alcohol on that little hole in his chest.

This is our chemo arrangement.  Makes me feel a little uneasy about the fact that Im pushing a drug into my sons body that comes with an Emergency Response Pack.