Tuesday, April 12, 2011

Skyler still continued to have fevers throught he night and the morning.  The cultures and the viral tests all came back negative so they sent us up for a CT scan today.  I was praying that they wouldnt find anything and that this would just be a mysterious fever that would just go away on its own.  I was wrong.  The scan showed pockets of infection in his lungs.  We are pretty certain its the fungal infection again.  What we dont know is the best way to go about treating it.  We need to know if we just need to switch antifungal medications, add a new one to the mix or if this is a different fungus all together.  We have two options in how to proceed with this.  We can start him on an extra antifungal and see how he responds or we could take him to the operating room and biopsy part of his lung.  The problem with just seeing how he responds to a new medication is that he could progressively get worse fast and if he gets too sick like he was before he would be too sick to handle a surgery like this.  I opted for the surgery now.  As scary as this is, I want to know exactly what we are dealing with while he is healthy enough to tolerate the surgery.  He will go in Thursday for the biopsy.  They will take him to get a CT scan first.  He will be sedated and they will stick a needle into the part of his lung where a little pocket of infection is and inject some dye.  Next they will take him to the operating room, intubate him, stick a scope into his lungs, collapse his lung and remove a part of his lung to biopsy.  However, if the spot is too hard to reach with a scope they will have to make a large incision on the side of his lung and open him up.  Either way he will most likely end up with another dreaded chest tube to drain any extra fluid or air.  We will be inpatient for awhile depending on how he does.  If everything goes well they could probably send him to ICS instead of the PICU to recover.  Hopefully the sample they take will be able to tell use just what we are dealing with and the best way to treat it.  Please pray that this is NOT a new form of fungus.  That would be devastating.  This whole situation is devastating actually.  I thought we were over the worst part.  I am so scared to go down this road again.  I am scared for Skyler.  He has been doing so good lately, he has come too far to have another huge set back.  Please pray for his safety during surgery.  Please pray that this is something that isnt going to send him back to a bad place.  Please pray that after the surgery he will be able to receive his chemo again so we can keep this dreaded cancer away that started all this in this first place.  The doctor said that most likely this phase of treatment helped activate this infection.  This is exactly what I feared would happen.

Right now his temp is 104.4.  The fever curve is getting higher so hopefully we can get him treated properly fast.  We will go to clinic again tomorrow for more cultures and to see what his counts are.  Hopefully they havent dropped yet.  Thank you for all your prayers and support.  It means so much to me especially during this difficult time.

31 comments:

Kristin said...

Crystal,

I can hardly stand the thought of Skyler dealing with this again. I am just sick for you guys and can only imagine how you are feeling. Me, my husband, our kids, we will all be praying for Skyler, that he will not have to travel down that road again. I wish I had more than that to offer. I love you and your little man, and I hope that you know that. You guys don't deserve this. I hate cancer. I hate it.

Hepworth Family said...

Crystal,
I want you to know that we are praying for Skyler. You do not know me, but you do know Jill Hughes and little Erin Hughes. They are our friends. We found Skylar's blog through theirs.

I too have a son about the same age as Skylar. Ben is constantly wondering and worrying about Skylar. "How is he today Mommy? Let me see so I know what to pray for." He prays for him in just about every prayer. He keeps asking me when he will get to meet this "Great Friend" of his. I tell him someday.

As a Mother I can't imagine going through all that you've been through. My heart aches for you. I wish I could reach out and hold your hand with you at times. Cry with you. Please know that we pray for you too. Is there someway that we can send a card? Ben would love to give him something. :)
brittysue2@gmail.com
With Love,
~Brittany Hepworth~

Briana said...

Oh, Crystal, I'm so sorry! And just last week we were talking about how he was doing well. I'm so sorry for this set back - this is awful! We've been praying for Skyler and we will continue to. We'll be praying our guts out! Much love to you guys!

Cyndy said...

Thinking of you and Skyler! Praying for you both!

Mckay said...

Fast for Skyler Event- Go here!

http://www.facebook.com/event.php?eid=100420723379889

Misty Jo said...

Crystal I am so sorry! I'm praying for you both. I hope everything goes smoothly and they will be able to get everything under control fast. I'm sorry you both have to go through this.

Anonymous said...

You guys are never far from our thoughts. Extra hugs and prayers always!!

Chelsea said...

I am heartbroken over this news and I haven't stopped thinking of you two since I heard. We will be praying extra hard for you guys. Know we love you!

nsudburyfam said...

Crystal,
You know we love you and Skyler and we are thinking of you constantly and praying for you. There are no words I can say that will make it better, but I want you to know that we love you guys :)

nsudburyfam said...

Crystal,
You know we love you and Skyler and we are thinking of you constantly and praying for you. There are no words I can say that will make it better, but I want you to know that we love you guys :)

Candice & Brent said...

crystal- I think I saw you at target today.. and wanted to introduce myself... but then figured you might think I was a crazy blog stalker.. oh wait..kind of am.. ha! I'm so sorry to hear about the fever.. Ill keep you guys in my prayers. Stay strong. He is a tough kid.

Amanda said...

I am heartbroken and I am mad. So mad. I am so sorry. I can bearly see through my tears. My family will be fasting for Skyler on Thursday. We love you and we are here for you. Many prayers.

Lacy Allred said...

This is unacceptable. I'm not sure how this can be happening..again. THIS is why I joined Team Skyler. He is the bravest little boy. I would have given up a long time ago. My thoughts and prayers are with you tonight, and every night.

Get better Sky.

Anonymous said...

You don't know me, but I check your blog everyday. My heart aches for you and Skyler tonight. Please know you both are in my prayers.

Eisha said...

So sad, I started reading your blog when he was at his worst (Flamm posted something on her blog--good friend from Oxford). I kept thinking, I should mail this stranger something from Australia. Save it for a pick me up! I am so sad for you guys!!

Anonymous said...

oh no, I am so so sorry. Please know that I am praying for you and your little angel. May God bless you!

zachs mom

Anonymous said...

Sending many prayers and a huge cyber hug.
-Krin and Mathias

lea said...

Oh Crystal, I am in tears over this! I so wish I could fix this for you and Sky. You and he are both in our prayers always...but expecially now! Hang in there...please let me know if there is anything I can do.

Piano Mom said...

Crystal, we never know why things happen the way they do and it just seems like you've already had your share of sorrows. I am sorry that you have to go through yet another struggle on this awful cancer road. Sklyer is a miracle. You are an amazing mother. I will pray that his biopsy goes well and that you get results. We all know that getting results is much better than a crushed or lost sample - right! Love you and Skyler. You can do this. You are strong and you are blessed with many angels to help you through this. --Jill

Anonymous said...

Sooo sorry to hear what's now going on. I have a ? Since he is going in for surgery why don't u have a feeding tube (micky) placed in his stumic so u wont have to worry about a tube down the noise he might like that soo much better I hope he does great feel better little guy

lindsay Roscoe said...

Crystal I am so sorry! This is more then i think any of us can stand. We all are here for you for anything and will most certainly be praying.

Schmitt Family said...

Crystal,
Know that we are thinking about you and Skyler, and that we will always be praying for you! I am so sorry that you are facing these challenges. So glad we got to see you at clinic even for a moment! You are amazing! Skyler is amazing! We love you!
Chandra and Jessica

Frayer Family said...

I will pray for your sweet son!! I am a friend of Kristen and I read about this on her facebook page. I hope all goes well for your family!!

susi and adam said...

Hi Crystal, I don't know you personally but I want you to know that i'm praying for Skyler. I'm a mom and my heart aches for all that you have been through. My brother also just recently lost his wife to cancer and is caring for their six little ones. Please know that even those who don't know you you care and i pray that angels will bear you up during this very very trying time. Skyler is the most beautiful boy. Love, Susanne

Rachel said...

Crystal, We will be praying extra hard for you both today! So sorry to hear that you have to deal with another setback. Skyler truly is a miracle! I know you already know that. I think you were smart to get the biopsy done right away. I agree that getting answers is much better than the unknown. You are a strong, amazing mother!
--Marie & Rachel

Melissa said...

I finally have an account so I can comment. I have been reading your blog since the beginning and our family has been praying for your little Skyler ever since. You both will be in our prayers that all will be well and he can recover from this fever and possible fungus. He is such a brave, courageous little guy with a wonderfully commpassionate and strong mother!
love, the Sandbergs

Anonymous said...

I read this latest with tears in my eyes. I can't even imagine what you are going through right now. Please know we are thinking of you and Skyler and will be praying for him. It just isn't fair!!!

Erin said...

Crystal,

My heart is breaking, thinking that you are dealing with this again. Skyler has been doing so well, it has been amazing seeing him bounce back from his time in the PICU, and now this. I'm wishing you and Skyler much strength for his surgery today and for an answer to his infection.

All our love,
Erin & Nolan (age 5, pre-B ALL)

Anonymous said...

you and skyler are all ways in ny prayers and thoughts.
you are booth so AMAZING WE ARE ALL WITH YOU.

Anonymous said...

I had to check in and see if there were any updates yet today. I have been thinking about Skyler all day today and praying that things went well
-Krin

Aubrey said...

Dang. I am so sorry to hear this is going on. You are such a strong mommy and he really is a fighter! You two make a great team. I pray that soon you will have some normalcy in your lives again, and I hope that they can get him pain free quickly. Ahng in there. Lots of prayers coming your way.