I learned a very valuable lesson the other day....dont leave your child who is just barely learning how to walk again and take a picture. 

Skyler got up and wanted to walk down the hall into his room.  Look at him walking all by himself (well with the walker of course)



He was walking so well that I thought I would be ok leaving him and taking a picture of this awesome moment, bad idea because he got a little nervous right after I took this and he fell down.

This was the end result from the fall....his feeding tube got ripped out!  It was Saturday night so the x-ray room where they place the NJs was closed so we had to wait until the morning to place a new one.  This meant no feeds through the night (the longest he has gone without them) and....

He had to take all of his meds my mouth instead of through his NJ.  He has a ton of meds he has to take and I didnt get any of them flavored because they usually go right into his intestines.  As you can see he wasnt a fan.

He was so brave though and took them anyway even though I know they tasted nasty.  Poor kiddo.

But look how cute he is without that tube taped to his face.  He was actually loving not having that in his nose.  He kept rubbing his cheek telling me it felt really weird because he was used to feeling the tape and tube.

The next morning we got up early and headed to the hospital.  He was so nervous and scared because he absolutely hates getting that tube put into his nose.  He has to swallow it and he can feel it go all the way down.  Here he is waiting to go back and get his new tube.  I was going to take a picture of them putting it in, but he needed mommy to hold his hands.  Even though he was terrified he was so brave and did it.  Way to go bugs!

Yesterday we had a couple of firsts for Skyler.  His platelets went up by themselves for the first time!  On Monday they were 227, yesterday they were 267.  I was definitely prepared for him to get a transfusion so seeing that they had gone up by themselves was shocking.  Im so happy right now.  I honestly didnt see this coming, I for sure thought he would be getting platelets every other day for a long time.  Another first for Skyler yesterday was that he walked!  He walked all the way across the room and back with his walker.  I almost started crying I was so happy.  I didnt want him to think I was sad that he was walking though so I held back the tears.  I wish you all could have seen the look on his face.  He was so determined and so proud of himself.  You could tell that it was hurting his little legs but he was determined to walk so he did.  Wow, yesterday was a good day.  I am one very proud mamma right now.  He has just come so far, its truly a miracle.
One Tuesday he is scheduled for a lumbar puncture to put chemo into his spine, and also a bone marrow aspirate to check for cancer cells in his marrow.  His blood count was a little on the low side yesterday so they will also be giving him a blood transfusion.  This will be the first time that he gets to go home right after his LP so it will be interesting to see how it goes.  Also his bili has stayed the same at .7 so all is well with this new chemo for now.  They will check again on Tuesday to see if it is still good and if so then they will give him another dose and also maybe add another one.  Tuesday will be a big and exhausting day.


Here is a picture of my must haves since being home.  I would go crazy without them.  Clorox wipes, a diet  coke, and a thermometer

And here is a picture of Skyler's must haves.  A game, movie, DS, and his barf bucket.

Also, look at all that hair coming in!  It started coming in last week and it has been growing like crazy

Here are some pictures of my little cutie.  They were taken by allenjamesphotography

Thank you Sherrae!

Clinic today went great, well besides the horrific drive in the storm.  Skyler's platelet count was 187.  That means no transfusion again today, holy cow its been over a week since he had his last transfusion.  Definitely a miracle!  His bili is still going down so they decided to start him on a new chemo called Vincristine.  This can be harmful to your liver so they only gave him half a dose to start with.  They usually also give another chemo with it, but they are just going to give him the Vincristine alone this week because if it does effect his liver and his bili count goes up then they will know which drug did it.  Please send up an extra prayer that his liver wont take another hit.  I hate that most of these drugs can damage the liver.  You HAVE to have a liver and if it gets damaged too badly, cancer kids arent eligible for liver transplants.  Pretty frustrating stuff.  My biggest fear is that his body wont be able to tolerate the full doses of these drugs, so it would be more likely that he would relapse....ugh! 
Overall he is doing well.  Im working with him on standing right now.  He has been so afraid to even try so its been a slow process.  He can stand with his walker on the edge of the couch, and a couple of times he has stood without touching the couch at all.  Go Sky!  I started a standing/walking chart for him, so he gets a prize for standing a certain amount of times.  He seems pretty excited about this so hopefully he will be more motivated.  It will be amazing when he can start walking again.  Strange though because I havent seen him walk for so long, but amazing.

                                                                        My little scooby

It was my brother's birthday on the 22nd so we did a pirate party for him.  My mom made a treasure hunt for him and Skyler was super excited for it because he already had his pirate stuff.  Happy Birthday bro!!



I went into clinic today thinking that Skyler's platelets were going to be super low because we didnt go in on Wednesday, but they ended up being 227!!!  Thats incredible to me.  Im so used to seeing his counts in the single digits and having to get them at least every other day, and for awhile there he got platelets every single day.  He has gotten well over 100 transfusions already.  Thank goodness for donors.  So we didnt end up getting platelets or chemo this time.

 I finished giving him his last dose of chemo for the week last night.  Since Skyler's bili is now normal they will probably end up starting him on a new round of chemo on Tuesday. (Isnt it weird saying Skyler and normal in the same sentence?  He is usually so far from normal in everything)  He hasnt been able to get the chemo he would normally be on because of his liver, so being able to start this new chemo is so good.  Im terrified though that it might hurt his liver again and we will end up back at he hospital, but he needs these drugs to keep the cancer in remission.

                Getting his vitals taken before going back to our room

Playing his DS while waiting for his labs to come back

Grandma Kathy came to clinic today which made Skyler so happy.  Thanks Kathy.

Hooray for high platelets!

A LOOK AT OUR DAY

Skyler got invited to a pirate birthday party for his friend, but since he cant be around other kids right now his mom brought over all the stuff that they were going to do at the party.  He was so excited and said "Oh that was so nice of them!"  He got to decorate his own pirate hat and it turned out pretty sweet.

Here he is in his pirate hat working on standing with uncle Ty Ty

This is his "scary" pirate face

 Trying to stab mommy with his sword.  He thought this was really funny!

Getting chemo with a smile on his face.  His belly is still pretty big because his liver is still huge.

He likes to know everything that Im doing and why Im doing it.

My dad brought home a walker for Sky today and look at him...he's standing!!!! Well his bum is still leaning against the couch, but this is HUGE for him.  He has been so afraid to even try to stand so seeing him do this is amazing.  Im sure it helped that my dad was there too.  He absolutely loves my dad, they are best buddies and he does so well when he is around.  Thanks dad and way to go Skyler!!

Yesterday they admitted us on the floor to get platelets because clinic was closed due to the holiday.  It was the first time I was actually relieved to be there.  It feels so much cleaner than clinic and everyone knows him and how I like things done.  It also helped having one of my favorite nurses too.  We found out Skyler has grown 9 centimeters since August!  They had to remeasure him because they didnt believe he had grown that much.  He does look bigger to me but I also havent seen him stand up since August either.  

They held off on chemo last week because his counts were low, but decided to start him back up yesterday.  I will be administering it to him at home for the next three days so we dont have to go back in everyday.  I like the fact that I can just do it at home, but dont like the fact that I'M the one that is putting the poison into his body.  Its a weird feeling.
We were scheduled to get platelets again tomorrow in clinic but I just got a call telling me that his post platelet count yesterday was 288.  Holy Hannah thats so high for him!  That means no clinic tomorrow...yay!!  I love it when he gets SUPER PLATELETS!  I just want to find this donor and give them a giant hug.

We had clinic again today and it went much better.  It wasnt nearly as crowded as it was on Wednesday and I knew what to expect this time so it went more smoothly.  They were also able to get us straight back to a room which was really nice.  The one thing that really bugs me though is that it seems like no one knows how to work with his central line.  We are using his dialysis catheter as his central line instead of a port like he normally would have and I have to explain step by step how to use it.  Its pretty frustrating, I wish I could just take it out of their hands and do it myself.  I made the poor nurse hep lock his lines all over again, because lets face it, she had no clue what she was doing.  Im getting really used to putting a smile on my face while not so sweet thoughts are going through my head.

Skyler is doing so well at home.  We are finally starting to get into a routine and it feels great.  Today my sweet dad went and bought Skyler one of those bike things that you plug into the TV and do games by pedaling.  He wanted to find something that would start exercising his legs and this is perfect.  Skyler loves it!  He did alot better at pedaling than I thought he would.  He continues to amaze me everyday.


Today in the car on the way to clinic he asked why he had to get pokes all the time.  I explained to him again about his cancer and that they need to test his blood alot.  He then said "Im so glad that my friends dont have cancer so they dont have to get pokes too."  How sweet is that?  I thought it was so sweet that instead of being sad that he had to get pokes, he was happy for his friends because they didnt have to.  Man I am one lucky lady to be his mama!

                          I love kissing this little guy but as you can see he is getting sick of all my kisses

Riding his cool new bike!

Im sorry I havent been to good at blogging lately, I have just been so exhausted.  I am constantly on the go taking care of all Skyler's needs, and if my body isnt going my brain is constantly on the go.  I have so many meds due at certain times, I have different nurses and therapists and delivery guys that are always calling, I have to remember exactly how to access and hang his IV meds and if I dont do it right I could really hurt Sky.  I am getting no sleep because I am constantly checking on him and making sure his feeds are still running and the bag is full.  Man this is a full time job but I am so thankful that I can do these things for him here at home.  It makes me feel so good to be able to take care of him by myself.  Im so busy buts its so worth it.  I remember sitting in the PICU and thinking that I was starting to forget what our normal life before cancer felt like.  I was starting to wonder if I would ever be able to see him be himself again and hear all those cute, funny things he would always say, especially after that scare when they told me his brain matter was shrinking and that they didnt know if he would be himself again when he woke up.  But Im definitely seeing his old self.  I love it!  He is just so dang cute, he is always making me laugh and smile. 

Today we had our very first clinic visit.  Clinic is where the oncology kids go to get their chemo when they are outpatient.  They have an infusion room with chairs lined up against a wall, this is where the kids get their chemo and transfusions.  With Skyler's type of Leukemia you are supposed to go in once a week in the beginning to get chemo and then after awhile you go once a month.  We should have been doing this all along, but with all the complications he has had he has just been getting all of his chemo inpatient.  So going to clinic for the first time today was a pretty big thing for us.  I kind of felt a little more "normal."  This morning, however, started out rough.  He woke up screaming in pain from his wound on his bum, and what made it worse, the home nurse had to come and put a new wound vac on because his wasnt working right.  This is always so painful for him.  By the time she was done he was screaming bloody murder from the pain.  I have never seen him in that much pain before, but I wasnt able to give him anymore pain meds because I had already given him the maximum dose he could receive.  Obviously it wasnt touching the pain so I called the hospital to see if I could give him more.  After twenty min of getting transferred from one person to another and Skyler screaming in the background, they finally said I could give him another dose of Oxycodone.  This took the edge off but he was still in pain.  When we got up to the hospital I couldnt find a close parking spot so I had to park far away and lug all of his equipment with me and push his little stroller at the same time.  When we got up to clinic it was PACKED!  To go from being stuck in the hospital for so long and not letting anyone come in the room unless it was the nursing staff because I didnt want any germs coming in, to walking into a room full of people about gave me a panic attack.  To me it was a giant germ fest and I was totally overwhelmed and starting freaking out.  I was told from other cancer moms that there are some rooms you can go in to be away from the other kids if you request it, so I immediately said I wanted to be in one of those rooms.  Unfortunately they didnt have one available because they were so busy.  They told me I could wait out in the hall until it was our turn though so we didnt have to be by all those people in the waiting room.  When we got out in the hall I was almost in tears, I didnt know how I was going to be able to go back in there.  I feel like this whole cancer thing has turned me into a freak.  I was panicking just thinking about it.  Thankfully Skyler's Oncologist happened to be walking by us and saw that I was freaking out.  He immediately went in and made it so we were able to get a room to ourselves.  I am so grateful to that man for doing that.  It was still hard to be in there but I was able to relax a little bit after awhile.  Skyler only got platelets today instead of chemo because his counts are too low so it only took a couple hours.  I was grateful for that too.  We are going to have to do this three times a week from now on because he still needs platelets that often.  This experience was alot harder for me than I had imagined.  I have no idea how I am going to be able to do this three times a week!  I'm hoping that it will get easier with time.  At least we can come home after and thats all that matters. 

I forgot to take my camera with me to clinic so I dont have any pictures of that, but here is a picture of Sky playing our version of bowling.

I know I already posted today but we had such a fun day at HOME today.  We had pizza, watched movies and played in his room for the first time.  I feels so good to be here with my little guy!  Man I just love him! 

                                                 Here are a couple pics of him in his room...

We are home again.  They kept us through the night because it took so long for the platelets to come up from the blood bank.  They dont know why his ear was draining but it looks ok so they arent going to do anything.  I hate the fact that I took him to the ER last night.  It is one DIRTY place and I wouldnt be surprised if Sky pick up something there.  UGH Im so frustrated especially because they didnt end up doing anything with his ear.  If he gets sick from that I will be so mad, I wish I had just waited and gone into clinic today and had them check it there.  The on call oncologists told us to go to the ER but I wish I would have listened to my gut.  Lesson learned I guess.  Im just grateful to be home again!!  We have to go to clinic on Wednesday for some more platelets and maybe chemo.  His ANC (a number that tells you where his immune system is at) dropped in half since we have been home, so thats pretty scary.  They may hold off on chemo this week just so his counts can come back up.

After three hours in the ER tonight, they admitted us on the floor.  Earlier today Skyler's ear starting draining fluid.  This has happened before when his ear drums have burst so I called the on call oncologist and she said to take him to the emergency room.  They looked and said it didnt looked infected and that it was still intact, but they just didnt know why it was draining.  They called our regular oncologist and he said he wouldnt put him on any other antibiotics right now so it was looking like they were just going to send us home, but then Skyler started throwing up and when he was done he had a lot of little red dots all over his skin.  This is what happens when your platelets are low so they checked his platelets and they were 8.  So they sent us back up to the floor for a transfusion.  Im not sure if we are going to stay the night or not yet, I kinda hope so because its late, Skyler is tired, Im tired, and he has all his meds that still need to be given so they might as well do them here.  Skyler is actually happy to be here (weird I know) but this is what he has called home for so long I think it kind of a comfort for him here. 

We are home!!  Its wonderful, exciting, amazing, and terrifying all at the same time.  Im going to keep this post short today because I am thoroughly exhausted, but I wanted to let everyone know that we did it.  Skyler is home and loving it!!!  It really does seem surreal.  On the ride home I kept looking in the rear view mirror and smiling because he was actually in the car with me.  It was perfect. 

Right after we got home and got Skyler settled, our home health nurse came and reality set it.  She brought with her about a million and a half boxes of supplies.  We jumped right in and she taught me how to use everything.  This is how my day and night went:


Administering Chemo, hanging his IV anti fungal and giving it through his central line, starting his feeds on his new pump, getting his new wound vac and having to change the dressing at two in the morning, giving all his MANY medications through his feeding tube, cleaning up throw up and changing all bedding in the middle of the night, turning him on his sides every two hours, racing to catch the barf bucket multiple times, changing 4 huge diarrheas along with changing all bedding again, and trying to keep him entertained and happy.  I have been constantly on the go.  My body and brain hurt like crazy, but its all completely 100 % worth it!!!!


                                                        SO ready and excited to go home

Saying goodbye to all our nurses

We got to ring the bell.  Normally its for when you are done with treatment, but they wanted us to because we had been there for so long

Saying goodbye to one of our favorite PICU nurse practitioners

Skyler's first breath of fresh air in over 4 months!

He was so excited to ride in the car

How cute is he?

WELCOME HOME SKYLER

He was so happy to finally be able to go into the house

It was my mom's birthday so we did cake.  My dad put candles on top of the cake box so she wouldnt blow on the cake...thanks dad

He loves birthdays and was happy to see the cake

Giving chemo

Finally able to relax and play his DS

These are just the meds that I give through the feeding tube, I still have to do IV ones and dressing and wound changes too