Wednesday, June 29, 2011

We are home!  Since every test came back negative our next step is the nuclear testing which we can do out patient.  Tomorrow morning we will head back up to radiology where they will draw some blood, alot of blood actually (40 mls) Then they will somehow (sorry Im not sure the correct terms for it) but they will attach some dye to his white cells.  We will wait a couple hours while they attach and then they will inject back in him the blood they took along with the new cells.  Then Friday afternoon we will go back in and scan him.  These white cells will go directly to any infection in his body and light up in the scan.  I really hope this can give us some insight in to what is going on.  Then depending on what it shows Skyler will start the new phase of chemo on Saturday night or Monday.  This is inpatient so we will back in ICS but at least we have this little break.  They wanted to start chemo tonight actually because it has almost been a month without it and that is dangerous, but Sky is supposed to be in a parade on Saturday so they were really great in working with us so Skyler could make it.  He is so excited to throw candy so Im very grateful they let us do this test outpatient and then start chemo right after.
Skyler is still having fevers but has been in great spirits today.  He actually talked and laughed with our nurse today.  This is huge!  Also one of our favorite PA's son came and gave Skyler an awesome dinosaur blanket today.  He actually was a cancer patient too and for a project for school he earned money to make this blanket, made it all by himself and came and gave it to Skyler.  He is the sweetest kid ever!  I was so touched by this.  This is Skyler's special blanket and he loves it.

Tuesday, June 28, 2011

Last night Skyler started the cleanse for his scopes today.  They had him on a constant drip of "poop juice" all night.  It was a fun night of getting up and running to the bathroom.  The endoscopy and colonoscopy werent scheduled until four this afternoon because we were an add on so I also had a very hungry grumpy boy on my hands.  Before the scope Skyler went and had an echo done.  Dr. Lemons informed me today that he heard a heart murmmer in Sky's heart so he wanted to check for any vegetation or infection.  I still havent heard back from that yet.  They werent too concerned because it can be normal to have murmmers once in awhile but they just wanted to make sure.  After that we were wheeled down to the O.R.  We havent been down there for awhile so it was weird taking that walk again.  Skyler has had so many procedures done that after awhile it just got routine for me, but today was much harder on both of us.  When he went through all of his surgeries he was too sick to even realize most of the time that he was going in for surgery.  So I was able to watch them wheel him back and not get too upset because he didnt really know what was coming.  Today as the anesthesiologist was walking him back he was screaming and crying for me.  I had to watch them walk down the hall as he was holding his arms out for me and screaming "I want my mommy"  I got a call in the waiting room though saying he did well and fell asleep in the anesthesiologists lap.  But who knows, they may say that to every parent to try and console them.  It worked though and I felt a little better about it.  Along with the two scopes they did a bone marrow biopsy as well just to make sure we arent dealing with a relapse here.  I got good news from both.  So far his bone marrow looks free of cancerous cells.  Its just preliminary though, they still have to look at it closer and do cultures.  Also the GI doc said everything looked great.  No signs of infection.  They did take some biopsies though so we wont here back from that for a couple days. 


So basically we are back at not knowing.  We did rule some things out  though so thats good.  I have a feeling we may be looking at fungus again.  We have a couple things we are going to try next.  One is (im not sure of the name) but they tag some white cells and look and see where they go to and light up in his body.  They will go to the places of infection.  The problem with this is that it may light up so many places in Skylers body because of old infection that it really wont be conclusive.  Its worth a shot though.  I really want to see where they end up in his liver.  I really think thats where the fungus is hiding.  Another thing is to stop all antibiotics and then draw cultures.  It may be that all the antibiotics are suppressing an infection so we cant detect it while he is on them.  So while he is in the hospital they can monitor him after they take him completely off in case he gets too sick.  One more possibility is adding on another antifungal med and see how he does.  I will know more tomorrow when I talk to the infectious disease docs again.


Last night I was feeling really down and upset about things but as I sat and read other blogs I realized how lucky I actually am.  There have too many of our cancer friends that have lost their lives to this horrible disease.  Not even just cancer, there are so many other diseases that are taking these innocent childrens lives.  Even though we are still going through some hard things, Skyler is still here.  I can still hold him and kiss and hug him.  At one point I was told that wasnt going to be the case but he survived, I still have my little boy here and thats all that matters.  We are very blessed!

He gets really attached to his teddy bears now.  He got one from another cancer friend also named Skyler, and then I got him this new one.  Their names are Teddy and Max and he loves sleeping with them.

Here he is getting the echo of his heart done.  He hated it, you can see him crying in this picture.


This is actually a part of his liver.  All those tiny white spots are not supposed to be there.  They are scarring and calcified spots of where the fungus used to be.  Im praying so hard that none of those are active.


This is down in the operating room waiting to talk to the anesthesiologist and to take him back.  He got really scared at this point.


This is the hall I watched them take him down screaming for me.  That has got to be one of the worst feelings for a parent.


Just starting to wake up in post op


He woke up screaming for a menu so he could order something to eat.  Poor kid was so hungry.  He was able to get a root beer slushy to help.


And of course a post op cheeseburger.  He downed that thing like there was no tomorrow!  You can see in this picture that he doesnt have a feeding tube anymore.  During extabation it got pulled out of his tummy and was sitting in his mouth when I was able to go back.  He wouldnt let the nurse touch it he just wanted mommy to fix it.  So I quickly pulled it out the rest of the way.  It was so funny because right when I got back there that was the first thing I saw and immediately pulled it out before the nurse had a chance to explain.  She gave me the funniest look because she wasnt expecting me to just do it.  I guess Im just too used to this stuff.

Monday, June 27, 2011

 Well we are back in our little prison call ICS.  I hate the feeling I get when I first walk into our room.  Its not a warm inviting feel, its a cold uneasy one.  Skyler is so unpredictable so when we walk in, its with the knowledge that we will never know when our "sentence" will be over and we can go home.  I hate the not knowing. I hate that I know now that just a one nighter can turn into months.  I know this hospital like the back of my hand and I hate that I can say that.  I cant believe we are still doing this almost a year into it.  I was told after six months we would hit maintenance and our lives could resume some sort of "normalcy"  Well our life has been anything but that and its been over 10 months.  Its so hard to see kids that were diagnosed months after us now in maintenance.  It all just seems unfair.  Unfair that Skyler isnt able to enjoy this nice weather.  I find myself crying alot more lately especially when I see other kids running around, riding bikes, going swimming, just being normal kids.  It kills me that I cant give that to him.  It kills me to see him lay on the couch all day so sick and telling me all the time he wished he wasnt sick and didnt have cancer.  Today when I told him we were being admitted he started bawling and begging me to tell the doctors no.  It broke my heart.  Im sorry Im being kind of a downer but this is how I feel and Im so frustrated with everything right now.  I need answers.  I need the right medicine to make my son better.

Tomorrow Skyler is having a colonoscopy as well as an endoscopy, so they are going in from both ends.  One possibility is that he has CMV thats hiding in his intestines, so they want to be able to look around, take biopsies and rule things out.  If that comes back negative another real possibility is that its fungus again.   We just cant tell for sure if there is some hiding out in his liver and kidneys.  Nothing is growing in his blood but its still a possibility its in his organs.  Also one of his levels came back elevated which leads us to believe that it could be fungus.  They are retesting him to see if it went up again or not.  The problem is that it takes about three days to get the results.  So another waiting game begins.  This just cant be happening again, I would be devastated if this is his fungal infection making him so sick again.  It was this awful infection that almost took his life.  Please please please keep him in your prayers.  I am just so worried right now and Im so sad for him that he has to be put through this again.

Sunday, June 26, 2011

We are still home but Skyler continues to get worse.  He will spike about every three hours now and sometimes the Tylenol wont even  bring it down that much.  He sleeps most of the day away because he is so tired and just doesnt feel good.  Today he told me he was so sick of being tired.  Poor kid I dont blame him.  I have a feeling we will end back up in the hospital soon so the past couple of days when Skyler is awake I have been trying to do fun things with him.  He will usually have so much fun for about an hour or so and then just get so worn out.  Here are some pictures of our fun times.  The smiles and laughs in some of these are priceless because they are rare lately.

I got this new swing for Skyler so he can enjoy being outside.  Here he is watching movies outside and having snacks


We also had cousins over for a picnic


He loves helping me in the kitchen.  He is a very good kool-aide maker


He also helped make cookies.  He loves cooking and everything he makes turns out so yummy


Love Love Love this smile!


This boy is amazing.  I love him so much!


My mom and dad came over today.  Skyler and grandma had so much fun filling up water balloons


Here they are sneaking up on grandpa to get him with a water balloon. 


Skyler had so much fun throwing all his water balloons at grandpa





We also had another little picnic with grandma and grandpa

Saturday, June 25, 2011

Just a quick update, we are home!  It just got to the point where they werent doing anything I couldnt do at home.  However, since being home he hasnt done too well.  He will spike a fever almost every four hours now.  He also has been getting chills.  He still has his feeding tube in so Im am doing feeds at home for him.  Good thing too because he just isnt eating much still.  I have a feeling we will be back in the hospital soon.  I know there is something wrong with Skyler I just wish they could hurry and figure it out so we can treat it.
Forgive me for the lack of updates, we still dont have Internet in our house so its hard to be able to post alot.

Thursday, June 23, 2011

The last time I posted they were pretty sure Skyler just had C-Diff but it turns out that wasnt the case.  In fact every test they ran came back negative.  This last week he has still been having really high fevers, vomiting alot, diarrhea, and his legs, feet, eyes and arm have been really puffy.  He also hasnt been himself.  He has been sleeping most of the day away and when he is awake he just has a very sad and sick look on his face.  We spent most days last week up at clinic and in the ER getting cultures, CT scans, ultrasounds and other testing done.  Every single one of them came back negative, but clinically he has been getting worse.  Tuesday night his fever got the highest it has been and I wasnt comfortable keeping him at home or going into the ER, Dr. Lemons felt the same way so they admitted him for observation.  Yesterday morning I had to make that hard and dreaded decision of doing a full body CT scan with contrast.  The reason I hate using contrast so much is that it is filtered through the kidneys and could possibly harm them.  The last time I let them give him contrast he ended up in the PICU again for a long time on dialysis.  You can see my concern about letting them give it to him again.  I know he is in a different spot now, he isnt in renal failure anymore but no one knows how much reserve he has.  I told myself I wasnt going to let this happen unless it was the only other option.  I felt like I was in that spot yesterday.  They had done every other test imaginable first with no answers and he was getting worse.  So with a very worried, panicked and heavy heart I agreed to it.  They wanted to give him oral contrast as well as IV contrast because they wanted to see in his gut since he was been throwing up so much and having so much diarrhea.  They ended up placing a feeding tube so they could drip it in slowly over three hours.  Out of all the scary things Skyler has to do, getting a feeding tube is the worst for him, he is terrified of this.  Just as I anticipated it took three other nurses along with me holding him down.  It broke my heart.  Once it was in however, he didnt want it taken out so I decided to have them run feeds for extra nourishment because he has been throwing up so much.  Last night he actually said to me "Mom I think it was a good idea to put the feeding tube in, now I dont have to worry about taking my medicines all day and I can just sleep instead.  And its not so bad now."  Some of the things he says to me makes me sad because he has had to grow up way too fast.

We got good and bad news from the scan.  Good news is that they didnt find any new infection.  It did show that his liver and kidneys are still very abnormal and are still engulfed with calcified spots where the fungus used to be.  They actually are only 80% sure that they are inactive calcified spots instead of active infection because there is no way to tell for sure, but they are unchanged from his last scan so thats good. They will probably remain this way for the rest of his life.  Also no fungus has grown in his blood so thats reassuring.

Bad news is we still have no clue whats making Skyler so sick.  His CRP (infection number) white count and ANC are all elevated suggesting infection but we still dont have a source.  It seems like our last admission all over again but this time instead of just having fevers he is acting very sick.  We dont know if these two are related or if we are taking about two separate "mysterious" infections altogether.  Its so hard and frustrating not knowing what is going on.  One good thing that has come of it though is we have had to run alot of fluids and he has been able to tolerate them well.  He still is puffy in places but nothing really new.  Also his kidney levels all came back normal this morning, so as of now the contrast hasnt given his kidneys a hit!  I am so relieved.

So are plans are really uncertain.  We are going to monitor him for at least another night and see how he does.  He also has a few tests that are pending right now so we are waiting to hear back on those.  He is now really behind on his chemo which really scares me so hopefully we can get him feeling better so we can hit his body hard with chemo (thats just how it goes, just as his body starts to recover they pump him full of more toxic poison)

Oh also his heart rate last night kept dropping down really low so they are just about to do an EKG now.  I will let you know how that goes.  Im sorry I havent posted as to what has been going on sooner I have just been completely exhausted mentally, emotionally and physically.  In the midst of everything that has been happening, Skyler and I moved into a home of our own on Saturday.  It seems like I have been running around like a chicken with my head cut of lately.  I have had so many things that I had to get done but at the same time making sure Skyler stayed safe and comfortable.  He actually really loves our new home and ever since we have been at the hospital he keeps telling me he wants to go back to his home.  Im so glad he loves it there.  Thank you all for the continued thoughts and prayers!

Tuesday, June 21, 2011

Sorry I havent posted its been a long crazy week.  Im way too tired to explain in detail whats going on, but are were admitted to ICS because Skyler isnt doing so great.  He has been a sick little boy this week.  Ill post more later when I know a little more about whats going on and whats going to happen.

Tuesday, June 14, 2011




Good news!  Skyler's chest CT came back almost completely clear.  He still has one little nodule left but as for the others they are all gone.  I am one happy and relieved momma right now.  Also his liver and kidneys look good too.  They still have scar tissue on them where the fungal balls were but its just scar tissue nothing new.  I started crying when they told me which made Skyler alittle scared because he thought something was wrong (mental note-keep emotions in check next time) but I was so relieved its like the flood gates opened.  I was worried that may be the culprit of the fevers but its not and I couldnt be happier. 

Bad news (well not terribly bad) he is still having fevers but they think it may be just C-Diff which is caused by being on alot of antibiotics.  It also may be the Adeno virus he had before but Ill take either of those options over lung problems any day.  To say for sure they needed a stool sample from Skyler today but he wasnt able to go so they sent us home with stuff so I can collect it (something Im super excited about...haha) then they will test it tomorrow.  They also sent us home with medication for C-Diff just in case thats what it is and I will start that tonight.  They also did some more cultures of his line and a nose swab to check for other viruses.  His hematocrit was low so he will need a blood transfusion tomorrow but his platelets and ANC are great.  Because he is still having fevers they will not admit him tomorrow to start this next phase of treatment.  He needs to have gone at least 48 hours without a fever before they will.  Im really bummed about that part, but the good news today kind of outshines this part.

Skyler is still feeling pretty miserable with these fevers and vomiting but hopefully we can get this taken care of quickly so he can get some relief.  Thank you all for your continued support and prayers, it helps tremendously.

                Skyler waiting down in imaging for his CT scan. 


He is so used to doing this that he lays right down without even being asked. 


It is still so weird for me to see him laying there without tubes or machines attached to him.  I have bad memories of this room.  This is when it hit me just how sick my little boy was when it took 5 nurses and 2 respiratory therapists to help keep him alive on the transport down here.  He was attached to so many machines and poles that it took every single one of them to lift him from the hospital bed to the scan table.  That is a day I will never forget.


The machine slides him back and forth through this hole.


I had to add this picture of the ceiling because I have so many of these paintings memorized.  This room, the surgery waiting room, and the hall where we wait to go into the PICU all have paintings that I will always remember because I looked at them so much.  I cannot stand mermaids now just due to the fact that in the surgery waiting room there is a painting of a mermaid that I spent countless hours staring at.


I love love love this picture.  Not just because he is so cute, but because I remember in the PICU when we were kicked out for a couple hours everyday I came out here to eat dinner and remember thinking how nice it would be if he could be out here with the other kids tossing pennies in and making a wish.  Every time I came out here I prayed that one day he would be able to, so this picture brings a smile to my face.  After he threw the penny in I asked him what he wished for.  His wish was not to have cancer anymore.  With everything in me I hope that wish comes true.

Monday, June 13, 2011

Skyler is still spiking fevers as high as 103 so we ended up in the ER last night for cultures.  His ANC went up to 1.9 so they didnt admit us, but his CRP (infection level) went up as well.  So we know something is going on but just like before we dont know what.  They are having us come in tomorrow for more testing and to do his CT scan early.  We are still scheduled to start HD MTX on Wednesday but if he is having fevers they may not be able to.  He has also been throwing up alot lately, around 4 or 5 times a day.  He hasnt really been able to keep anything down and is looking way too skinny.  Im afraid he may need a feeding tube for nutrition.  Im crossing my fingers that that wont be the case, he is so terrified of putting those in.  Its weird, but last week I had this uneasy feeling that things werent going to go as planned.  I hate that I might be right about that.

Conversation of the day:

Skyler- "Mom have you ever had cancer before?"
Me- "No honey"
Skyler "Oh good because its tough"

Friday, June 10, 2011

This morning Skyler developed a fever of 102.  A one time temp of 101 or above is a gauranteed trip to the hospital so early this morning we headed up to clinic.  They told us to pack a bag because if his ANC was  under 500 then he would be admitted.  Since they were only 300 on Wed it was most likely that we were going to be admitted.  When we got to clinic they drew cultures and counts and surprisingly his ANC jumped up to 800.  Yay!  Since he wasnt acting sick and his ANC was ok they sent us home.  Usually when someone goes in with a fever they start the antibiotic Rocephin right away as precautionary measures, but since Skyler is on three heavy duty antibiotics already there was no need for it.  Rocephin is nothing compared to what he is on.  The plan is just to wait and see what his temp does and wait for the cultures to come back.  No news is good news in this case so Im hoping I dont get a call this weekend.  The last thing Skyler needs right now is a line infection, but since I have to access his line so many times a day that possibility becomes a lot more likely.  I try so hard to make sure I do everything right and keep everything as clean as possible, so if the line is infected that would be so devastating for me because it would be my fault.

Here is a picture of his antibiotic syringes.  This isnt even a whole weeks worth.  They used to come in bags which I hung from an IV pole but since he is hooked up for most of the day an IV pole would be such a hassle to get around with.  Luckily there were able to switch us over to a syringe and pump.


This pump has become Skylers constant companion for the past couple of months


Its even his friend during the middle of the night.  Hopefully we can start weening him off soon so he doesnt have to be attached to this thing all the time.  It would also be nice to see what sleep is like again.  I dont end up going to bed until 4 in the morning, thank goodness he sleeps in later.  I dont mind too much though because I thinks it awesome that he can still get what he needs and sleep in his own bed.

Wednesday, June 8, 2011

Skyler didnt make counts to start the new phase of HD MTX tomorrow.  I was hoping he would just so we could get this over with quicker but honestly Im pretty nervous about it, so at least I have the weekend to mentally prepare myself alittle more. 


The past couple of days Skyler has been looking a little different to me but I couldnt figure out why.  Today as I was looking closely at him I realized he is starting to lose his eyebrows and those longs eyelashes of his.  He lost them down in the PICU before, but he was sedated most of the time so you couldnt really tell.  He is still as handsome as ever though, and I think it makes him look older.  Before I was thrown into this world of cancer and saw someone who had lost their hair to this disease I would think how sad.  Now whenever I see a bald head I smile.  A bald head equals courage and strength to me.  Whenever I go to clinic and see all those kids without hair I know I am surround by amazing and inspiring people.

Here he is in the PICU.  He didnt really lose his eyebrows too much but his eyelashes are gone.


This was taken last night.  He eyebrows are definitely thinning out.


As I was looking back at these pictures I just cant believe where we have been and how much he has been through.  I look at him today and feel so blessed to have him here and doing the things he is doing. 


THEN..




NOW...
Playing baseball!!


A happy smiling boy!


And playing with bubbles!


Its really incredible at how well he is doing.  We have definitely been blessed.  Those pictures just seem like a dream, well a nightmare really that I try to erase from my mind.  But look at these recent pictures...incredible!

Monday, June 6, 2011

Just as we had anticipated Skyler didnt make counts today.  However his ANC did come up a little to .2 instead of 0.  Its still extremely low but its headed in the right direction.  His platelet count is 39 which is alot better than 9 so thats headed in the right direction as well.  We will do more labs on Wednesday and hopefully they will be high enough to get admitted the following day.


Last night I had to change Skyler's central line dressing.  He absolutely hates this.  I change it about every 4 to 5 days and its something I dread because its so painful for him.  I hate being the one that causes the pain but Im glad I can do it at home. To hold the line in place there are two stitches holding it to his skin.  Both of these stitches have come out though so the only thing holding the line in is a cuff up in his neck.  The line tunnels up through his neck and directly into his heart.  Even though I am so used to doing this, its always a little nerve racking because I have to keep everything sterile so it doesnt get infected.  With a little distraction from uncle Ty though Skyler did really well this time. 

         Skylers central line is actually a dialysis catheter.  Usually oncology patients have a port which is placed under their skin.  And then to access it they have to poke a needle in and attach the tubing to it.  Skyler had one placed right after he was diagnosed but it ended up being pulled due to the fungal infection.  You can see the scar from it on the right side of his chest.  When Skyler was on dialysis for renal failure they had to replace the dialysis catheter 5 different times in many different places.  This line now is the last one he had.  They didnt want to pull it because it was a working line and they didnt want him to have to go through another surgery.  All together Skyler has had 15 lines placed.  Those are not including the many differet tubing going into his chest, belly, mouth, nose ect.


This is the part where I have to scrub the site with alcohol.  You can tell by the look on his face this is not his favorite part.  He is usually screaming right about now though so he did great.


This is the finished product.  You can kind of see where the line tunnels up through his neck.  It feels really weird when I touch it because you can totally feel it.  Whenever I flush his line he can actually feel it going up through his neck.  So weird.  I think it would really freak me out feeling that but not Skyler, he is the bravest kid I know.




Saturday, June 4, 2011

For those of you who have signed up for Team Skyler for the CureSearch walk or made donations, THANK YOU!  I am so grateful for your support.  This walk hits so close to home and is something I am so passionate about.  I am not one to ask for money or help but to help find treatments with less harsh and toxic side effects and to ultimately find a cure I will do just about anything.  For those who have signed up already I am making shirts for our team.  If you would like one (they are free) please email me with your size at crystaln_isaacson@yahoo.com I will bring them the morning of the walk.  If you would like them sooner please let me know and I will try to get them to you. 


Now for a Skyler update:  He is doing ok considering all the chemo that has been pumped into his little body these last couple of months.  He still has mouth sores, he has been vomiting quite a bit lately which has led to a drop in his weight and his legs hurt really bad.  At times be can barely walk, but for the most part his legs have gotten stronger and yesterday he "jumped"  His feet really didnt come off the floor but for him this is amazing.  Im so proud of him and he is so proud of himself.  I love the little look on his face when he does something new like this.  He really is proud of himself and loves to show people his new tricks. 


Clinic was pretty hectic this week.  He was supposed to go for his LAST chemo in this phase and ended up needing platelets too.  They were nine.  We were in the midst of switching insurances which led to so much confusion with our home health company and left Skyler without all of his IV antibiotics...so frustrating.  We were left with the only option of admitting him to the floor to get his meds. but were finally able to get everything straightened out at the last second.  He ended up having to get all his antibiotics done at clinic which took five hours.  We were the last to leave, clinic was already locked up with the lights out when we were done.  He got what he needed though and we escaped an overnighter, thank goodness.  I cant believe we are finally done with this delayed intensification phase.  I am so happy right now.  This means we have one more phase left until we can get some sort of normalcy in our lives again.  Skyler is still neutropenic (ANC is 0)  On Monday they will come draw labs and see if he makes counts to start the next phase of high dose methotrexate.  If he doesnt they will come back on Wed to check again.  Our plan right now is to come in next Thursday to clinic, get a CT scan and then get admitted, but this all depends on how fast his counts recover.  He will be in the hospital because they are giving him extremely high doses of this chemo and he needs to be monitored.  The number of days just depends on how fast his body can rid the chemo once it has done its job.  We have four rounds of this lasting two months.  Im definitely NOT looking forward to this phase of treatment, but this will increase his chance of survival 10%  Because he cannot take steroids due to his fungal infection that decreases his chance of survival by 10% so another 10% added on is something we NEED.

 Good ol platelets and antibiotics.  We are getting used to seeing that yellow bag again.
 

This is clinic after they closed up.  We were still there, finally getting his chemo at this point.


We were able to leave the door open once we were the only ones there.  This is his silly face!


A push of chemo and we were finally able to go home. 

Thursday, June 2, 2011

I cant believe we are already in June.  The CureSearch walk is NEXT month!  I am so excited for this, and for the awareness that it will bring of childhood cancer.  I have seen so much pain and suffering ever since I entered into the cancer world. There have been feelings and images that I wouldnt wish on my worst enemy.  There have been too many nights when I sat holding my sons limp hand and listening to a mother down the hall sobbing at the loss of her child, or walked by parents with tears streaming down their faces.  I still cant get the images of my son laying in a hospital bed covered head to toe with tubes that were the only things keeping him alive out of my head.  Along with the pain, suffering and heartache though I have also seen miracles.  I have seen Skyler start breathing on his own when everyone thought he never would again.  I have seen him take his first drink after months of not being able to, and I have seen him take his first steps again.  I have also received many blessings. The support we have been shown has been incredibly humbling for me.  My eyes have been opened to how much good there is in this world.  There have been so many people who have picked me up when I didnt think I could go on.  Alot of those people were people I have never met before.  This last year has changed me for the better and I want to give back.  I want to help raise money for a cure.  I am proud to be able to take part in this CureSearch walk and am so happy that they have come to Utah for the first time this year.  With CureSearch 94% of the money you donate will go directly to childhood cancer research!  A fellow cancer mom and her husband made this video for the walk.  Every child in this is from Utah.  Its hard to watch a video of little children battling this awful disease and then see a picture of my son pop up.  Some of these kids are now off treatment, some are still fighting and some are now angels.  One boy in this actually earned his angel wings while this video was being made. He was on this CureSearch committee and was dedicated to finding a cure all while fighting for his life. 

http://youtu.be/e9Pam10D7bU

If you would like to join Skylers team or just donate you can go here http://www.curesearchwalk.org/saltlakecity/teamskyler
Thank you all for your support!