10/11/11 – 11:02pm
Needless to say, it has been a long day. Sean did great in surgery and is resting peacefully right now. With a little help from the drugs, we expect him to do so through the night. He was literally in surgery for almost 7 hours! The doctor said the mass was unusual in that a large portion of it was hard as a rock and took a great deal of effort to remove. Leave it to Sean to make the doc work so hard for his money! This density did not have anything to do with the age of or type of mass…. each one is different and this was just the makeup of what was in Sean’s head.
The preliminary scans are very positive but of course, the final test results will not be in for two more days. If the results stay true, then we should be dealing with a year or two of additional scanning just to keep an eye on things. Let’s all pray for this outcome! If not, well we will cross that bridge if and when.
We are in ICU now but hope to be in a normal room in the next day or two. We will have more MRI scans done tomorrow if Sean is feeling up to it. This is just to make sure everything looks good and nothing was hiding.
Cutting this email short to get some sleep but please tell everyone to keep the emails coming! It made his day to hear from so many of you this morning before surgery.
As always, thank you for the strength your prayers have given us.
Mark Ena Sean and Leah
10/13/11 – 7:50am
Good morning everyone,
Just a quick email before our day gets started.
GOD IS GREAT! The MRI results from yesterday could not have been any better….There were no signs of additional masses near the site or anywhere else!!!
Sean is doing well. He slept most of the day yesterday but had stretches of wake and communication. There is a good amount of pain of course but he is handling it like a champ. He always seems to amaze, doesn’t he!! He has been on a liquid diet this entire time…. I better warn them to have lots of food on hand when they do start letting him eat!
We hope to get in a regular room today but the hospital is packed and we may have to wait for one to free up. I will let you know.
God be with you today…. I know He is with us! 🙂
Ena Mark Sean & Leah
10/15/11 – 8:45am
Yesterday was another big news day! The biopsy results came in and again we got the best news possible given the circumstances. The final prognoses is Low Grade (Level 1) Astrocytomas. That means no chemo and no radiation, but we will need to come in for MRI’s every 3 months for the next couple years. For those of you that are like me and have no idea what the actual name means, here is the description:
Consist of slow growing astrocytomas, benign, and associated with long-term survival. Individuals with very slow growing tumors where complete surgical removal by stereotactic surgery is possible may experience total remission. Even if the surgeon is not able to remove the entire tumor, it may remain inactive or be successfully treated with radiation.
And here is another link that was helpful: http://www.childrenshospital.org/az/Site2906/mainpageS2906P0.html. Of course, we are going to being learning a lot more as the days, months go by.
The past couple of nights has been difficult for Sean. The massive amount of steroids makes it literally impossible to sleep and he is very anxious and oh so irritable. So we are all working on very little sleep. He’s a real trooper, though…. I don’t think I could be as strong. He is looking forward to today because the Physical Therapist is coming and he might be able to actually get out of bed for a while. Balance and coordination may be an issue for a while so we may be working with a PT in the months to come.
We finally got in a regular room Thursday and it looks like we will now be here till Monday maybe Tuesday. 🙁 I am starting to get used to “that hospital smell”. We are in room 133. Visitors are welcome of course but we request you come with an understanding….if we ask you to leave or cut your visit short, please don’t take it personally. We want to do what is best for Sean and for our family and sometimes that just means some quiet time for all of us. Oh, and just an FYI we learned yesterday, latex balloons are not allowed in the hospital (mallard balloons are ok).
Sean’s email is stuffed with all your wonderful well wishes and words of praise. We plan to finally go through them today.
Thanks again for all the prayers, thoughts, and offers of help. It has made this so much easier to get through.
Ena Make Sean & Leah
10/16/11 – 2:40pm
After his first night of sleep in 3 nights, Sean is feeling (and responding) so much better. Check out the pic of him enjoying the sunshine with his cousin Jordan.
Speech & physical therapy are a daily thing now and are going really well. It will take some time for all that to get back to normal but that is OK.
I don’t need to tell you he is fast becoming a favorite of all the nurses and therapist. He has them cracking up with his sense of humor and insanely positive attitude. His light shines so bright wherever he is.
Looks like the go home date is now Wednesday. Can’t wait!
Hope your day is a blessed as ours!
Ena Mark Sean & Leah
10/18/11 – 1:05pm
PRAISE GOD We are out of here! Well, at least we will be sometime today if the rehab doctors agree to let him go. 🙂 They removed the “brain drain cord” as we call, and this morning’s CT looked great so hopefully everything else will fall in line.
What now? In elementary terms, when you remove an object larger than a golf ball there is, of course, a big space left. Sean’s brain is now adjusting to this new space which is causing a lot of changes in his head. The effects of this (and the surgery itself) on Sean are obvious and will be with us for a while. His speech is slurred and difficult at times to understand; his balance, coordination, and fine motor skills are off and just walking is a chore. We will have to do some intensive rehab in all these areas for the next several weeks. The plan/hope is they will let us do this in their full-day program so we can get out of here!
What has not changed are his cognitive skills, his spirit, his sense of humor and of course his FAITH. He is the same ol’ hilarious, God lovin’ genius. 🙂
So I will keep you posted but cross your fingers that we are on the road soon!
Ena, Mark Sean & Leah