Tuesday, May 31, 2011

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.

Sunday, May 29, 2011

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.


Friday, May 27, 2011

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.

Wednesday, May 25, 2011

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!

Tuesday, May 24, 2011

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?"

Monday, May 23, 2011

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 

Saturday, May 21, 2011

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.

Tuesday, May 17, 2011

Skyler had clinic again today.  He had to get ARA-C and a lumbar puncture.  This was the fastest clinic we have had that involved the "sleeping medicine"  They had the chemo ready for him when we got there and it was just a quick push and then we went down to RTU for the LP.  He was a champ down in RTU and woke up alot better this time.  The only set back was a huge headache from the zofran he got before his chemo.  It was supposed to be a slow push over five minutes, but when the nurse turn around to get the flushes ready Skyler "accidentally" pushed the rest in really fast.  I say accidentally because he wont tell us if he pushed it in on purpose or not....silly boy.  He felt really bad though when he realized that wasnt a good thing to do.  Because it went in so fast though he got a really bad headache, but other than that things went really well today.
Skyler was hit hard last week with chemo but so far he hasnt had any bad side effects.  This has been such a blessing because he usually gets really sick with the combination he got.  He hasnt thrown up at all yet and has been eating like crazy.  I really hope this week goes as smoothly.  Also, the results came back from the bone marrow aspirate and biopsy and everything looks good, no bad guys as we call it!!! He said the other day "I have superhero good guys in my body that are getting all the bad guys"  He says the cutest things alot.  Another cute thing he whispered to me was "When Im 8 I dont think Ill have cancer anymore and that will be a happy day!"  A funny thing was "I sure dont want to be a doctor anymore so I dont have to pull out yucky central lines...gross"  Things are going so well right now and I couldnt be happier about it.  I love seeing Skyler happy and playing with toys instead of sick on the couch or in a hospital bed.  Thank you for all your prayers, we sure have felt them.

Saturday, May 14, 2011

Yesterday Skyler turned 5!  I cant believe how fast by little boy is growing up.  This birthday was special because birthdays now take on a whole new meaning in the world of cancer.  I will never again take for granted a birthday.  The best part was that we were able to celebrate this day at home instead of a hospital room.  On his actual birthday we celebrated it with just family.  We opened presents, had an Easter Egg Hunt (because he missed doing this on Easter) and had cake.   Today we had a birthday party for him with cousins and some friends.  Skyler LOVES games so we decided to do a carnival party.  We had games, a pinata, cotton candy, snow cones, presents, face painting and another cake ( Im sure I went overboard in the sugar department)  The weather didnt cooperate with us and it rained when we were trying to do games, so we went in for presents and then were able to go back outside again when it stopped.  Overall it was a success and Skyler said he had alot of fun and was glad friends could come over.  Skylers counts will be dropping low soon so Im glad we were able to celebrate turning 5 with his friends before they drop.  It was kinda of a reality check though seeing Skyler along side alot of friends around the same age and seeing what a toll cancer has taken on his body.  His body may not be up to par yet but his mind and spirit are as sharp as ever.  He is such a bright kid, and like any other kid he just wants to have fun.  It was so good seeing him enjoy himself and seeing him interact with other kids.  His cousin Emma just wanted to hold his hand alot of the time and he loved it.  It was just so cute. 

Happy Birthday Skyler!!  I love you with all of my heart.  You continue to amaze me everyday with your strength and courage.  I learn so much from you everyday.  You are my hero and always will be.  You fought so hard to make it to this milestone and Im so proud of you.  Heres to an easier year filled with fun and laughter!

Warning: Picture overload

Yay Skylers 5 today!

This is his new toy.  He said he was too scared to ride a bike right now because he didnt want to fall so I got him this jeep so he could still get around outside and have fun.

Such a handsome birthday boy!

He even took if off road...atta boy

He took his cousins for a ride and they had alot of fun.  I love this picture!

This was the Easter Egg Hunt he was finally able to do

Yummy birthday cake

This was one of the games we had at his party

Nice throw bud!

Another game...

He sure loved present time!

I had to put this picture in because he just looks so grown up

We played this parachute game while it was still raining outside

My brother did face painting for the kids.  It was his first time and he actually did awesome

After alot of the kids had a turn at the pinata it fell so my sister held it up so more kids could hit it.  I love the look of fear on her face!

As soon as the candy fell Skyler dove to the ground.  I havent seen him move like that since being diagnosed.  I guess you will do anything for candy right?


At the end of the party he had to let these balloons go up to heaven for daddy so he could have fun too

Tuesday, May 10, 2011

Skyler started the second half of this Delayed Intensification phase today.  Im so happy we are almost done with this one.  Maintenance is getting closer and closer!  We spent six hours at the hospital today getting a lumbar puncture and bone marrow aspirate.  He wasnt scheduled for a bone marrow aspirate today but I mentioned that I thought it would be good because of this last infection that we still dont have any answers for.  The doctor thought it was a good idea and decided that if we were going to do that than we might as well do a biopsy as well.  So along with bone marrow they also took a little of his bone to biopsy.  Skyler did really well this time and played and laughed up until he saw the white stuff (anesthesia) go in, but he was out within seconds so we wasnt scared for too long.  He woke up pretty sad because he was dizzy but it didnt last long and he did great after that.  We headed back up to clinic after to get some chemo.  Today he got ARA-C and Cytoxan.  They have to give lots of fluids before they give the Cytoxan because if this drug sits in his bladder than it could hurt it ( I totally forgot what its called but it involves bleeding from the bladder)  In the past Skyler has not done well with fluid boluses so I was very hesitant to let them give it to him, but since it could be really bad for him if it sat in his bladder I gave the ok.  I was still really worried after he got about 100 mls so I asked if Skyler could drink the fluid he needed instead of going through his line and still be ok.  They told me if he could drink half of a big water bottle in an hour they wouldnt have to give him the rest of the bolus.  Skyler was a champ and did it!  Im so proud of him because I know it was so hard but he did it anyway.

We also got some good news today.  His CRP, which is a test that indicates infection, came back and it dropped from 18 all the way down to 2.  This is such a relief! His white count and ANC have gone up but since his CRP has gone down they arent really worried right now.  Also the doctor was able to look at the slides from the marrow they took and so far everything looked good, they didnt see any cancerous cells!  Now that was an even bigger relief.  I have been so worried about getting these results back so knowing that it looked good makes me one happy momma.  The official report doesnt come back for a week but I feel really good about things right now.  

Here we are waiting to go back for the LP and aspirate.  He is giving mommy a back rub while watching TV, what a sweet boy.

This is RTU (Rapid Treatment Unit) where they do the procedures

Here he is just waking up from anesthesia.  He wasnt too happy at first.

Mommy and Sky.  Im so proud of this boy!

He starting rubbing his belly saying it was really big after he drank all that water.  It was so cute.  And dont worry that is not the outfit he came to the hospital in, he had an accident during the LP so they gave him these pants to wear.

These are the sites where they took the marrow and put chemo in his spine.  He is really sore right now from where they did the biopsy, he can barely walk tonight.  He is a tough kid though so Im sure it will be ok tomorrow.

Sunday, May 8, 2011

Happy Mother's Day to all you mothers out there!  This was a special Mothers Day for me because I got to spend it with my sweet little boy at home.  He surprised me yesterday and had a dozen beautiful red roses, a card, and chocolates delivered to our house.  He picked everything out all by himself.  They were absolutely perfect!  I hear he was very picky in what he picked out, it had to be just right.  He is one sweet and thoughtful little boy.

I remember the day I became a mother.  There arent words to describe the love I felt seeing Skyler for the first time.  He was perfect in every way.  That day changed my life for the better and I cant imagine life without him. 

I am so very grateful that I have gotten to spend nearly 5 years being his mommy. 

I just love being called mom by this amazing boy!

I also want to say Happy Mother's Day to my amazing mother.  She really is amazing and I dont know how I could have gotten through these past 9 months without her.  For the first 6 weeks or so after diagnosis she stopped working and lived at the hospital with me.  She spent countless nights sleeping in that very uncomfortable rocking chair, made sure I had everything I needed, read to Skyler while he was sedated, she made those horrific months easier for me with her presence.   She has always been there for me and for that I am so grateful.  She has taught me how a great mother should be.  I hope to be as good as a mother to Skyler as she has been to me.  I am so grateful that she is Skyler's grandma.  Skyler is one lucky boy!  Happy Mother's Day mom I love you with all of my heart!

Friday, May 6, 2011

This morning Skyler went in for another CT of his lungs to look at the nodules.  The scan showed they are stable and unchanged.  I was hoping and praying that they would have shrunk because his fevers have gone away, but at least they havent gotten any bigger and for that I am very grateful.  We go back in on Tuesday for a lumbar puncture where they will take out spinal fluid and replace it with chemo.  Then we will head back up to clinic where we will start the second half of this phase.   The chemo he will be getting that day is Ara-C and Cytoxin.  Then for the next three days I will be giving the chemo to him at home.  Just another IV med I will be adding to the list, the only difference is I will be wearing the lovely chemo attire and injecting poison into my son.  Im getting to where I could do this in my sleep!  Thats ok I actually enjoy being able to do the things he needs at home.  Never in a million years did I think I would be where Im at now.  Accessing Skyler's line to give multiple antibiotics and chemo just come second nature now.  Sometimes I forget what it was like before cancer.  What did we do?  How nice would it be to have the biggest worry of my day be deciding what to do for dinner.  Its crazy how fast life can change.  Yesterday we had lunch on a blanket in the front yard then he played with a couple toys outside for a little bit (not too long because he tires easily) but just doing those things was a BIG deal and a huge accomplishment.  Im also getting so used to seeing him without hair that when it did grow back it was weird for me.  Today I wanted to go get a registration form to fill out for him to start kindergarten and found out that everyone had gone home at 3:00.  My first thought was "thats weird shouldnt they stay open later for the kids that have to get chemo and CT's that day?"  Silly thought but thats really what went through my head.  Oh the joys of childhood cancer.

                    Here are some cute pictures from our day yesterday.