Tuesday, March 29, 2011

WARNING: If you dont want to hear me complain dont read this. Today was horrible.  I just want to start off by saying that I hate clinic.  I dont want to sound mean but its true.  I am so tired of all the rude dirty looks I get from the nurses and staff.  Every time I ask if we can go in a room I always get the same response, a rude sounding "Why?"  with a look like they think Im crazy and then they seem so put out when they have to ask the charge nurse if I can go back to a room.  Today I was told I couldnt and that I HAD to go to the infusion room.  This room is where kids usually go to get chemo.  Its just a bunch of chairs lined up with IV poles.  I just cant do it.  There is always someone back there coughing and Im just not ready. Today was already a rough day for me because I was so anxious about this new phase and even though I was visibly upset they still said I had to go back there, they have to keep clinic "flowing"  They didnt even attempt to try and make me feel like they cared.  I had to ask to two nurses to get the charge nurse before she even came back, and when she did I got the same rude looks.  She said she would try and work something out and never came back.  Thank goodness for our oncologist (Dr. Lemons) it only took seeing the look on my face to get us a room.  Im am so grateful to that man, he has helped me out so many times when NO ONE would listen to me.  No one there knows what Skyler has gone through and I when I try to tell them that the reason Im so nervous being back there is because of what he has gone through, I dont get shown an ounce of compassion.  I get the response "Everyone here has gone through alot"  Of course I know that lady!  And I also know that just a few months ago my son was laying in the PICU on deaths door so cut me a break!    Im not trying to take away from what other kids have gone through, every child that has cancer has gone through alot, its hard and devastating on everyone.  What I am saying is please respect my situation and the fact that right now at this point in our journey I just cant do the "normal" routine.  I have heard that for some families, coming to clinic is a good experience and in a way its like family, but not for me.  For me PICU is our "family" they saw what he went through and they care.  I wish some of their nurses were up in clinic so I can be shown at least a little respect.  My mom went with me today and she couldnt believe how I was treated.  You would think that of all places the oncology clinic would be the most understanding.  I just want to show them a picture of Skyler when he was really sick and say "THIS is why Im so afraid of germs right now!"  Sorry I know you dont want to hear me complain.  I know that things can always be worse.  I really am grateful for where we are now and that we can actually go to clinic for chemo instead of being inpatient.  Normally I can handle the "looks" because I just dont care what people think about me anymore. This is the only way I know how to take the best care of my son and it works for us, but today just pushed me over the edge.  I think alot of it had to do with already being a nervous wreck to begin with.  Ok Im done complaining, now on to Skyler.

Today Skyler started Delayed Intensification.  He received Vincristine and Doxorubicin.  Doxo is one of the new drugs in this phase.  We were going to just start off with half a dose and see how he responds to it, but Dr. Lemons decided to go ahead with the full dose today.  He is hopeful that since he has done so well these past few months that he will do well with this.  I hope he is right.  After he got his chemo we went down to RTU for a bone marrow aspirate and LP.  He had such a hard time today not being able to eat or drink anything before the anesthesia.  I kept having to remind him that he could get a red slushy and Popsicle when he was done.  Today was pretty rough for him.  As me and my mom were out in the hall waiting for him to wake up in the recovery room, I heard him start crying really loud so I hurried back there.  He was really upset as he was waking up.  He kept crying and saying he felt dizzy.  He hasnt ever woken up like that before.  Once he was able to get his slushy, Popsicle and Cheetos he did better.  He still was dizzy for awhile though.  Luckily he was able to get his chemo before we went down to RTU so we were able to just go home afterward.  When we got home he was doing really well.  He was really happy and had tons of energy.  He was also eating great.  About an hour ago though he started complaining of a headache and also said his back was sore (where they took bone marrow)  He is sleeping now so hopefully when he wakes up he will start to feel better. Good job today Skyler, I love you so much and Im so proud of you!!

     This is part of the infusion room.  Soon after we took this all the chairs filled up.

Thankfully Dr. Lemons got us into a room for his chemo

This is the doxorubicin

Skyler had this look alot of the time.  He was not a happy camper today because he was so hungry and thirsty.

If you can see in the back the anesthesiologist is pushing the "sleeping medicine"  Skyler got really scared at this point.

At least he was able to go to sleep in mommy's arms

Here is Dr. Lemons getting the chemo ready to put into his spine.  I actually hate this picture because seeing his little feet laying there makes me sad.  I wish I could hold him the hold time and tell him everything will be ok.

Here is the anesthesiologist giving Skyler oxygen

They are prepping his back right here for the poke. 

He was one sad little boy waking up.

He was alot happier though once he got all his goodies

Monday, March 28, 2011

Skyler barely made counts to start this new phase of chemo.  His counts had to be above 750 and his are 900.  Thats a big drop from 3300 a couple weeks ago.  I dont think his counts have been that low since we have been home.  Im not liking the fact that his counts are low going into this phase because they are going to drop even more with these new drugs.  His platelets, however, are a different story.  They jumped up to 497!  Way to go platelets!  At one point I thought we were going to be dealing with extremely low platelets for the rest of his life so Im really happy about this little miracle.  His hematocrit is low but not low enough to receive a blood transfusion.  He hasnt gotten a transfusion for a couple months now, also a miracle! 
We will go back up to Primary's early tomorrow morning to get a bone marrow aspirate, an LP to put chemo into his spine and then also start the new drugs.  Please pray Skyler's little body will be able to tolerate this, and also a prayer thrown in to calm my nerves would be much appreciated.  Thank you so much for all the love and support, I am deeply grateful.

Friday, March 25, 2011

We got some wonderful news yesterday.  The chromosome test that they sent to Cincinnati to check and see if it was part of his genetic makeup that made his body not tolerate the chemo came back negative.  Yay!  Im so grateful that this is not the case.  If it was they wouldnt even attempt to give him a couple of the drugs he needs.  Im just crossing my fingers now and praying that his body was just so sick from the Leukemia and thats what made him so sick in the induction phase.  I pray it wasnt a certain type of chemo because starting Tuesday he will be receiving those drugs.  Its been great having this break these last couple of weeks.  I have been trying so hard to not think about whats coming up.  Im just so scared.  I mean its always a nerve racking thing watching your child being pumped full of such harsh stuff but it literally makes me sick thinking about him starting this new phase of chemo. 
It will also be strange seeing his hair fall out again.  I have gotten used to him having hair again.  I remember the first time his hair fell out.  He was so sick and miserable that he slept most of the time.  I sat there in the middle of the night crying while I was pulling his hair out.  It came out so easy.  It was such a strange surreal feeling and it was also like a slap in the face.  I knew he was sick, I knew he had cancer, but seeing his hair fall out made it that much more real for me.  On the plus side, I LOVE his bald head.  I love rocking him to sleep and rubbing that soft little head.  I think I may actually miss it when it grows back in for good.  He has never said anything about losing his hair, it just wasnt a big deal for him.  But the other day when I was explaining to him that his hair will fall out again he got really sad and said he didnt want anybody seeing him like that.  It kind of broke my heart.  I think its more of a big deal now because he is home and things seem more "normal" to him.
Another good thing that happened this week is that I was able to order Skyler a real bed.  Since he has been home he has had to sleep on a hospital bed that is specifically made for pressure sores.  But since his pressure sore is closed now I went online and got him a real bed yesterday.  They will come switch beds on Tuesday.  Im so excited because it makes things that much more normal for us.  Plus, that wound bed is so loud...ugh!

Recently a couple of my friends and fellow cancer moms went out to Washington D.C. with CureSearch to advocate for childhood cancer.  They are amazing for doing this.  Here is one of the quotes from one of the speakers: 
"We are curing our children with drugs from the 50's, 60's, and 70's. We have only improved our cure rates by giving more, not by discovering more. We push them to the brink. Most of them will experience toxicity at some point. This is unacceptable in the adult cancer world, why is it acceptable for children? Curing is not enough. They deserve a lifetime of health. They need new drugs that aren't as toxic. We have the tools for this, but we need the funding."
"How will history look back on this congress? By cutting back, our children will suffer."

If you want to read her whole post you can go to  www.sweetbrinley.blogspot.com

Wednesday, March 23, 2011

Skyler has been doing really well this week.  He still will throw up at least a couple times a day, but he is so used to it now that he just continues on with what he was doing like nothing happened as soon as he is done.  He is such a little trooper.  I made it a point that this week we were going to have fun especially while he counts are still high enough because I know they will be dropping soon,  so I let him go over to my sisters house and play with his cousins while I went to an appointment.  The look on his face was priceless when I told him we could go over there and he didnt even have to wear a mask.  He had so much fun and it made me so happy to see him enjoying himself so much.  Skyler LOVES to share.  I remember when any friends would come to our house he would always give them one of his toys, even his favorite ones.  It makes him really happy to give things to people, so after he knew we were going over there he went in his room and grabbed lots of things for his cousins.  He also made me stop at a gas station on the way there so he could get them each a drink and a treat, it was really cute!

Today was such a beautiful day so we were able to go for a walk.  Skyler has been doing so well with his walking so he was able to walk instead of riding in the stroller.  He was such a boy and found a "funky" stick to take on the walk with him.  He also decided he wanted to pick a flower for me so he walked everywhere trying to find a flower even though I knew he was getting tired.  He didnt want to go home until he found one, luckily he was able to find a pretty yellow flower to give to me.  He is such a sweetheart.  Its little moments like this that I will always treasure. 
               Below is him finally finding the flower for me:

Me and my little sweetheart!

Saturday, March 19, 2011

Today we went and visited Daddy's grave.  We havent been there for awhile because of Skyler's diagnoses so it was great to be able to go today.  Skyler said he had to get him red flowers because that is his and Daddy's favorite color.  Skyler still talks about him all the time and how much he misses him.  There was a time before Skyler was diagnosed that he stopped talking about him except for saying that he didnt want to die like Daddy, but now since being home he mentions how much  he misses him and how much he loves him all the time.  At least every other day.  I dont know what brought this on because I have been focusing so much on Skyler that I havent been talking about him lately like I did.  I like to think though that when Skyler was sedated for so long that him and Daddy were catching up.  Its crazy how much Skyler is like his father.  There are so many little things he does just like Ben did that I know he didnt get from me.  I know its hard on him that he doesnt have his daddy around, but I think its special that his dad is now his guardian angel.

Friday, March 18, 2011

Spring cannot come fast enough.  Sitting inside the house all day is really starting to wear on me and Im sure even more on Skyler.  I try and think of fun things to do, play games, and play with his toys but doing the same thing over and over and playing with the same toys gets old quick.  I miss the days where we could just get in the car and drive somewhere fun.  I mean even just getting out and going to the store was something we could that we cant anymore.  The hardest part for me is knowing that other kids his age are in school and playing with friends while he is sitting at home all day.  This is not how a four year old should be living its just not fair.  I have been so afraid to let other kids come over here because Im terrified of bringing in germs and if he got sick I would kick myself for not doing EVERYTHING in my power to stop it.  But I have been feeling so guilty about that and even though he has cancer and is "sick" he still needs to have a life.  So the other day I threw my fears aside and had one of his little friends come over.  He also loves Mario so they were able to play Mario on the Wii together, play his DS with him and play with Skyler's toys together.  It was so good seeing him have fun and play.  We also went to my moms work and had a picnic and fed the ducks.  Even though is was cold we still had a good time.  It was great hearing him laugh when the ducks got his bread.  I just love this little boy.  He deserves to be happy.  I wish I could give him a "normal" life free of cancer but I cant.  I can, however, try and make it as "normal" as possible for him.  I want him to play with other kids and get out and do things.  I know I have a long way to go before I get over my crazy germ freak thinking (I dont think I ever will completely) but I have been working on it for him.  I will still be a clean freak carrying around hand sanitizer all the time dont get me wrong, but I have to learn to let go and relax a little.  When it gets warmer we will be able to go play outside.  We will be able to play sports in the yard, swing, have picnics (that arent cold), we can go for walks etc. and there also wont be as much sickness going around.  Im just cant wait.  Bring on the sunshine please!!!

Skyler and Cooper playing Mario on the Wii.  As you can see by their faces its an intense game!

Playing the DS together.  They look so cute.

We went twice to my moms work to feed the ducks.  This was the warmer day.  Look at Skyler walking!

In case you are wondering why he is wearing a mask when no one was around, its because I didnt want yucky duck water splashing in his mouth.

And this was the cold WINDY day we went (nice hair right?)  The birds flew right up to us.  Skyler was laughing at me because I am so afraid of birds (they always look like they are getting ready to attack and peck at my head)

Tuesday, March 15, 2011

Today was Skyler's last day in Interim Maintenance!  Yay, one phase down and two more grueling ones to go before we get into maintenance.  Skyler's counts today were great and his walking has gotten alot better so they upped his Vincristine dose to 100% again.  I actually asked them to do this because he has just gone too long without the full doses of his chemo.  In two weeks he will start the next dreaded phase called Delayed Intensification (DI)  This phase is just like the Induction phase,  and we all know how his body tolerated that...it didnt.  This is what Induction did to him:

Respiratory failure, Kidney failure, Removal of his spleen, Liver disfunction (almost complete liver failure) and all of this happening while trying to get rid of the cancer in his blood.

So to say Im scared is an understatement.  He has just come too far to have any set backs like this again.  It would be devastating.  The hardest part about this is that we dont know exactly what did this to him.  Was it a specific chemo, a combination of the drugs, or was his body just so sick from the Leukemia that the chemo just pushed him over the edge?  We just dont know.  I was talking with the doctor today about it and he was saying that since he has reacted so well to this phase of treatment that he thinks maybe the cancer was just so bad to begin with that his organs werent working right that the chemo just pushed him over the edge.  He was thinking (well hoping) that since his organs are now almost all recovered that he may tolerate this part alot better.  To be certain we will give him half a dose of one the drugs that is harsh and see how his body reacts.  He is also supposed to receive steroids in this phase but since steroids help fungus grow he will not be getting any.  I should be happy about this since I have heard steroids are awful, but thats just another thing he isnt getting to keep his cancer away.  He will also lose his hair again and his counts will also drop.  I have been dreading this phase and am so scared for him.  Its a miracle that his body recovered from the hit it took in the beginning.  Please pray that this doesnt happen again. 

Here are a few pics of clinic today:

Since January Skyler has gone from 106 centimeters to 107.4 I cant believe how much he is growing.

Here he is getting his chemo.  He makes getting poison pumped into him look so casual.

I may be smiling in this picture but I was super irritated with how long it was taking to get his chemo up from the pharmacy.  We got there at 8:00 am and we didnt get the chemo up until 11:00....so frustrating!

Watching the "yellow juice" going into him.

Sunday, March 13, 2011

This little boy just constantly amazes me.  He has gone through so much and still has to do alot of not so fun things, but yet he still is so happy and has the best attitude toward things.  The other day Skyler was having such a rough day and had been throwing up like crazy.  If it was me that was that sick I would be laying in bed all day probably feeling sorry for myself, but not Skyler, he throws up and then continues on being his happy little self.  Here is what I walked into the other night, you definitely wouldn't be able to tell he had had a rough day:

Also, he is a pro now with his central line.  He knows all the correct terms and everything I have to do.  Last night he even wanted to flush his own line.  Definitely not something I ever thought my four year old would learn how to do.

Friday, March 11, 2011

Last night I went to dinner with a group of amazing women.  We all have one thing in common: our child has cancer.  Some of these women I just met tonight, others I have just talked to on the Internet, and others I have met in person but I have a strong bond with each and everyone of them.  Its so nice and such a comfort to be able to sit down and talk with someone who just "get it" and they can understand my crazy cancer mom brain.

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep . M
ake up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…
(I copied this from another cancer moms page.  Thanks Chelsea)

Wednesday, March 9, 2011

Today's clinic visit was stressful to say the least.  Skyler had to go in and get two more PEG shots and they also had to replace his feeding tube.  For at least a week Skyler has been throwing up all his meds.  He has an NJ which is placed in his intestines instead of into his stomach, so if it is in the right spot he shouldnt be throwing his meds up.  It got to the point where I was afraid he wasnt getting all of the medicine in him he needs, especially his antibiotics, so I called them to order an X-Ray along with getting the PEG today.

Skyler did really well and was so brave up until he saw the needles.  I had to have someone help me hold him down, man this kid is strong.  They have to give the shots in both legs so they had two nurses come in so they could just to it all at once, but one of the nurses didnt know how to count and it through them both off poor little guy.  He was sad for about five minutes after, but was his normal happy self again once we got him some cookies.  They had to watch him for an hour after to make sure he didnt have an allergic reaction to the chemo.  When we were finished we headed downstairs to flouro to get a new tube.

I had them skip the X-Ray and just send us to flouro for a new tube because I was positive it was in the wrong spot. Skyler is terrified of this room because he knows that this where they to put a new tubes in, he hates this!  He started crying again as soon as he saw that table.  The other kids in the waiting room waiting for their turn were probably scared to death out there, because I'm sure it sounded like Sky was being tortured.  I dont think I have ever heard him scream that loud before.  The dang doctor didnt make things any easier though.  I swear he should never be allowed to work with kids.  Skyler is very protective of his lines and tubes so once the doctor had it in and was checking placement Skyler was screaming "You are holding it wrong!"  The doctor then said in a very rude voice "I think I know what I am doing Skyler"  He also said "You need to stop screaming like that right now" like he was scolding his own child.  If you are going to be working with little kids you have to understand that they are terrified and a normal reaction is to scream and try to make it stop.  They also need to leave the parenting to parents.  I was fuming inside, I seriously wanted to bust out some ninja moves (haha childish I know) 

By the time we were done Skyler was pooped and was so ready to go home.  He was asleep before I even started driving.  I feel bad he had to do two scary things today.  Hopefully our next clinic visit will be alot easier.  Im sure it will because chemo through his line is a piece of cake for him now.  Now for some good news, Skyler has been walking so much better these last couple of days.  His legs seem stronger and he doesnt seem like he is in so much pain.  It was definitely the Vincristine that was doing it to him and Im glad they cut the dose in half to give him a little break.  

 Skyler happy on his way to clinic even though he was scared for his pokes

Getting his blood pressure taken.  He looks so big to me.

He hates when they feel his tummy.  Its still tender when they feel his liver.

The nurses making sure they are giving the right chemo to the right patient.  The nurse on the right is one of my favorites.  She also works on ICS so she knows Skyler and all that he has been through.

This is right after the shots. They gave him warm packs to put on his ouchies.  He wasnt too happy.

They do actually have the beads of courage at PCMC so we were able to get his other ones today.  This made him happy and also took his mind off of his legs hurting.

He was happy he could pick them out himself.

Here is a picture of Skylers morning meds.  He was throwing all of these up everyday.  This is why I was so concerned about it.  He needs each and everyone of these to help keep him as healthy as possible.

Waiting in Flouro to get a new tube placed.  You can tell he wasnt very excited about it.

They have all of the supplies waiting there when you walk in.  This always scares Skyler.

You cant see it very well but this is the X-Ray of his tummy.  It is definitely in the wrong spot.

Its always weird for me to see him without anything attached to his face because it has been so long since he has been tube free.  What a handsome little guy!

Love you Skyler, you did so well today.  Mommy is proud of you!

Monday, March 7, 2011

Last night we had a "just because we can" Mario Party.  What kid doesnt like a party and Skyler loves Mario right now so we decided to plan one.  I also thought this would be a great way to bring up his spirits.  I know it must be so hard for him to just sit inside all day, because it is for mommy, so I wanted to have something for him to look forward to.  First, he wrote out the invitations and then delivered them.  This is his silly face:

Then he helped me set the table.  He loves when I give him jobs to do, so setting the table was his job and he loved it.

Didnt he do such a good job? He wanted rice krispies for desert so he made the rice krispies that are in the middle of the table all by himself.  He put red sprinkles on top and cut them out as a shape of a mushroom so they looked like Mario ones.

Then we decorated the room.  Welcome to Mario Land!

Then the guests arrived and we ate cheese pizza and crunchy potatoes (funeral potatoes) I know pizza and potatoes dont go together but thats what he wanted.

Our first game was pin the mustache on Mario.  This is my family with their mustaches on.  They look pretty cool right?

This is my sister in law Jen trying to pin the mustache on Mario.  She is totally off the paper, but sad to say she was actually one of the closest. Go Jen!

And my brother Jason on his turn.  Umm a little to the left bro.

We had to spin seven times first, and boy did it make me feel old when I couldnt walk and wanted to puke after five turns.
This is a link to watch Skyler's turn.  He didnt have to spin but he had to close his eyes.  All the adults couldnt even get the mustache on the paper but for some reason Skyler was able to nail it...huummm

We also had a treasure hunt.  This is everyone trying to find the next clue.  You dont see my dad because he thought he could be helpful chillin on the lazy boy.  Silly grandpa.

We then played the present game where we had to pick a present from the middle if you rolled a certain number on the dice, or you could steal a present someone had already opened.  I love the dollar store when you need cheap prizes.  And yes, they all broke within a couple minutes.

Skyler loves to play card games so we also played UNO.  This kid is amazing at games.  I try my hardest to beat him now, I show no mercy and I still end up losing most of the time.  He is definitely an Isaacson.  Dont ask what my dad is doing because no one knows.  I dont think he got that he is not supposed to show people his cards.  Again, silly grandpa.

And then last but not least we played Mario on the Wii.  Skyler loves having people play his favorite games with him.  He was super tired and had a bad headache towards the end of the party, but he lit up when everyone started playing Mario with him.  I love seeing him so happy and Im glad he could have a fun night.
He did great helping me plan the party.  Thanks buddy for a fun night!