Thursday, November 11, 2010

Alrighty, here is what is has been going on the past couple of days. Skyler was scheduled for an EEG and MRI yesterday. They did the EEG and then took him down for the MRI. The plan was to do a conscious sedation where they give him Versed and Ketamine to relax and put him in lala land so he would be out of it and not move for the scan. Plus that room is super scary, no child should have to be awake for that. Anyway so I guess my son has built up a huge tolerance to these meds (I wonder why)  because they had to give him three doses of the Ketamine and that still didn’t sedate him. He woke up a couple minutes later in the scanner screaming for mommy and trying to pry the thing away from his face. I was in the control room watching him on a little camera and basically screamed for them to take him out.(yup they will never let me watch again Im sure) So basically this attempt at the MRI failed. Plan B was to schedule him today for another MRI but with general anesthesia. So today we went down for that and found out that they had to intubate him for it so they could protect his airway while he was in the scanner because the anesthesiologist couldn’t be in the room with him. Needless to say I was not fond of the idea and had a break down in the hall. After 7 weeks of being intubated, the last thing I want was for them to jab another tube down his throat. Everything went really well though and they had him extubated before I got back there to see him.
The results of the MRI showed that he has some abnormalities of the white matter on his brain. Most likely from the Methotrexate (chemo) they have to give him in his spine. Its now scar tissue that will always be there. They say that they have seen this before with this type of chemo. Some kids have permanent brain damage from it and others recover when their bodies recover. We just wont know for sure how this will effect Skyler until if becomes an issue. The next step is to talk to our Oncologist about whether to continue with this type of chemo or not. Im pretty sure that we will continue with it though because the most important thing right now is to treat his cancer right so it doesn’t come back. We can live with a little brain damage, but having the cancer come back can kill him so its kind of a no brainer to me. Good news though is that they didn’t see any clots or anything bad that would cause seizures. Thank goodness!! Im so glad we don’t have to do a surgery to place a shunt or anything like that.
The results of the EEG showed no seizure activity either but it showed that his brain is a lot slower now. He has been so sick for so long that it doesn’t surprise them that his brain is slower now. Just like with the other test he may be able to recover completely from this but he also may never recover, only time will tell at this point. Like they told me before, Im going to shove this to the back of my mind and focus on the good that came out of this. He is awake. He is talking. He is moving again and making us laugh. I know things could have been a lot worse so I am so grateful for where we are at now.
The highlight of my day today was getting a visit from another little cancer buddie also named Skyler and his mom.  He also had a rough go of it, but is doing great now.  It was amazing to see that!  Thank you for coming to see us, it ment a lot to me.

This is the teddy bear that Skyler and his mom gave to Sky.  He loved it and fell asleep with it...super cute!

This is when we were about to transport him down for the MRI.  He had to take his balloon with him that his friend Cami gave him.  We wouldnt let go of it.  Here he is in the halls, balloon and all.


Lindsey Hill said...

what a relief! I have been worried sick waiting for this update!!!! What a tough guy you have there!!!! We love you!!!

Amy said...

It was great to meet you today:) We are praying for your Skyler to have the same recovery my Skyler had....90% healed with his white matter. we opted to do Ara-c via IT for the rest of treatment and then 8 days of cranial radiation...and that put him with the rest of the kids on low percentage of relapse in the CNS. These kids have a lot of tolerance..and they can bounce back so quickly!
Our blog is with caringbridge if you would like to read our journal, etc. It's under skylerhansen.
Take care!:)

Beth.. One Blessed Nana said...

Crystal - praying that God just continue to strengthen you and give you the energy and faith you need to be by Skylers side! Praying for God to moving His healing hand upon that precious little boy!

Cynthia said...

I was referred to your blog by a friend. I wish your family every success- that's one tough little cookie you have there! My children would like to pray for him if that's okay? And you.

Anonymous said...

Just stopped by to say I'm thinking of you and still praying. If there is anything else I can do for you, please do not hesitate to ask.

Much love.

cjmom said...

Thanks so much for keeping us up to date. You are your little guy are in our prayers everyday and night. You are a hero.

lindsay Roscoe said...

Skyler looks so sweet sleeping with his little stuffed animal. I can't imagine all the things your family are having to go through. it's astounding to me the strength you have.

Whidbey Woman said...

Praying for you all right now.