Tuesday, April 26, 2011

So I know I already posted today but if I dont write things down when I find them out I forget things.  I talked to a couple attending docs about what we found out today and they are all pretty much in agreement that aside from cancer Skyler also has an immune deficiency or syndrome.  He definitely does not have a normal immune system, and then add cancer on top of that and it makes for an easier time getting infections.  He has just had too many odd things that arent supposed to happen with his type of cancer.  It does make sense though because it seems that his whole life he has been sick.  He always had some type of virus that turned into croup.  He could never go longer than five weeks without getting croup.  To find out for sure what type of immune problem he does have he needs to be off chemo, so it looks like in a little over three years we will find out the answer for sure.
Our plan now since we still dont have any answers is to basically just wait and see what his counts and fevers do over the next week or so.  If they are trending down then thats good and we will just leave him on these 3 antibiotics for several months.  If nothing changes or things start trending up then we will have to look into changing around his meds and doing a full body CT scan with contrast this time.  They normally give contrast through an IV before they get scanned so they can see everything, but we have been doing his without contrast because contrast hurts the kidneys and the last time we gave him contrast it landed him in the PICU the 2nd time intubated.  Im just not willing to risk that right now unless it is absolutely necessary.  The problem doing it without contrast though is that you cant see everything so we could be missing something.  One of the hardest things for me is trying to make the right decisions is Skylers care.  I have had to make some pretty big decisions that I wish I never had to make, but this is the situation we were dealt I have tried so hard to make the right ones.  I think one of the biggest lessons I have learned is to go with my gut.  A mothers intuition is key.  I have learned so much about myself through this process and I am grateful for that.  I wish I could have learned these things without the words "child" and "cancer" in the same sentence, but I believe we are given trials for a reason and we can become better and stronger because of them.  Thank you everyone for your continued support.  I have become a better person because of you and your service, kind words and encouragement.  This devastating world of cancer really has opened my eyes to the good people in this world.

I was able to take the bandage off of Skyler's chest tube site.  This is his 6th chest tube scar, one of the many scars that he is covered from head to toe in.  There isnt a limb on him now without at least one cancer scar.

And this is just a cute picture I took today.  His cancer buddy gave it to him and it makes me laugh everytime I look at it.


Anonymous said...

You don't know me, but I read Skyler's blog all the time. You and Skyler are in my prayers I hope you find the answers you need. I pray for the doctors who work with him that they may be guided.

susi and adam said...

that is interesting.... sounds like the docs and you are starting to put things together... the answers will come. In the mean time enjoy that beautiful boy in the good moments!! That lollipop picture is awesome!!! Hope tomorrow is a good day for you and Skyler! Our prayers are with you guys.

Schmitt Family said...

You are amazing! A huge strength to so many of us! We love you guys!

Anonymous said...

crystal,, you are doing the best thing by trusting your "mommy gut" keep the the good work,, you are amazing!! skyler with the lollipop,, honestly the BEST picture!! love love love it.

May God bless you,,,

zachs mom

M-Cat said...

Continued thoughts and prayers for Skyler, for you, and for his doctor's. That answers will be found, and healing will begin.

You couldn't have him at a better hospital right now.

You and your strenght amaze me and inspire me.

Dawn said...

You don't know me but I've been reading your blog for about a month. I went back and read from the beginning. (I work on computers all day, so I can read a lot.)

I am the mother of a 21 y/o special needs daughter. While she doesn't have cancer, she is very medically fragile. I was also a single parent as her dad couldn't "handle" the stress.

My name is on every single consent form. It's on there for every test & surgery...including brain surgery. There have been many times I've second guessed my decisions. Especially after she had a stroke following the brain surgery.

I've been doing "this" for a lot longer and while I wish I could tell you it gets easier, that would be a lie. I can tell you that at some point, you will be able to look back and know, deep down, you made every decision for your son with love.

We can research, talk to doctors, talk to other parents, but the bottom line is you make your decisions with all the knowledge you have at the time and the deep desire for you child to be healthy and happy.

From what I read, you are an awesome mom. Hang in there. There will always be those down days, I still have them 21 years into this, but just look in the eyes of your son who loves you like crazy and know you are doing what's right.

My email address is on my profile if you ever just need to vent. Wishing you and Skyler good days ahead.


Briana said...

The immune deficiency does seem to make sense. Eric and I were talking about it after I read him this update and we have so many questions - would they want to do a BMT for the immune deficiency? Knowing that his immune system is extra sensitive and fragile, would they want to keep him inpatient for normal ALL treatments (until Maintenance or something) in the hopes of keeping him isolated and away from germs?

Either way it works out (IV antibiotics for months or the CT scan) it will be challenging for you. I just want you to know that I've been thinking about you and I REALLY admire your strength. We've been dealing with some health issues with our girls over the last week (ongoing, but it's just been more of the same and some new, rough stuff this last week or two) and I am worn out - my spirit just feels so weary and tired of worrying about their health. It's hit me anew that it takes a lot to stay strong for your kids - dealing with all the junk wears you out. Our problems pale in comparison with what you and Skyler are going through. But, I read your update last night and remembered how strong you stay/have stayed for Skyler throughout all of this and I am just AMAZED by you, Crystal! Like I said, it takes a lot of energy, strength, faith, etc, etc. to stay strong for your kids during such a long weary battle with their health and you are doing it. That's amazing! You are such a great mom - Skyler is so blessed to have you as his mom. Anyways... sorry for the ramblings - just thoughts that have been on my mind over the last 24 hours.

We are praying that you'll know the right decisions to make. I agree with what Dawn said above - you make each decision with all the knowledge you can get - but each decision is surely made with love.

Hang in there, guys!

The Armga Family said...

You dont know me either, but I've been reading Skyler's blog for months. This post gave me chills. I know you have seen much good in the world through this experience, but you have done much good for the world yourself. You are such an inspirational woman, the faith that you have and the courage that gets you through each day is truly amazing. You are a wonderful person and I'm happy to just know you through reading yours and Skyler's blog. Dont ever forget what a wonderful person you are. You and Skyler are in our prayers, and we send you many many warm wishes. ♥
The Armga Family

Anonymous said...

Hello Crystal and Skyler I have been following your blog for some time, and have such a deep respect for you! Your an amazing mom and such a strong person.
Skyler, you are such an amazing example for me. For the hard times that you have gone through, I tip my hat to you, for always smiling, and allowing us to share this glimps of your life.
May your prayers be answered and you find peace in your decisions. Your in my thoughts and prayers! Keep fighting SUPER SKYLER!! A friend in Southern Utah

Brandi said...

Thinking of you and Skyler..You guys are AMAZING and so STRONG! I agree with everyone, you are doing the best for Skyler and making the best choices you can. Always go with your gut. I know from experience. I wouldn't have my little guy today if I hadn't of. Love the picture, he seriously brings a smile to my face everytime. :)

Erin said...

That is one big lollipop!! What a great picture of Skyler.

An auto-immune disorder makes sense considering all the illnesses Skyler has had. You are making the right decisions for his health - continue to follow your instinct and your heart.

Erin & Nolan

chelsie said...

Goodness! This is all so frustrating! The immune system thing makes sense. It really does. And that that realization might lead to getting him the care that he uniquely needs would just be so wonderful. I hope you get answers as soon as possible. You are such a strong mother. You doing every thing you can to make the best decisions for him you can. And you're doing great!

Brady said...

I just want you to know that I admire you so much. You are an amazing mother to that little guy. I can't begin to think how it must feel to know that you might have to wait 3 years to get answers and what all of this means for his treatment. I just want you to know that I will always be here to support you and Skyler. We love you both.