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Thank you to all the BB&B families that have stood by our side for the past several weeks.   So many of you have asked to know about Sean's surgery and recovery that I have decided (and Sean has requested) to share it here.  Don't worry....your favorite teacher's aide will be back in action in no time!!  :)

On Oct 6th I took Sean, our then 14 year old son, to Scottish Rite to get a CT scan of his sinuses.  We thought an acute sinus problem was causing his terrible headaches for the past several months.  What we found out instead turned our world upside down.  He had a 6cm tumor in the lower portion of his brain that was all but completely blocking the flow of fluid from the brain.  By Tuesday the following week he was in surgery.  Below are the updates shared throughout the past weeks.

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10/11/11    11:02pm

Hello all,

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 age of or type of mass.... each one is different and this was just the make up 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

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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 where 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

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10/15/11    8:47am

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.[2] 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 have 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 use 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.  Again, his email is shmanga96@gmail.com if you would like to send a hello.

Thanks again for all the prayers, thought and offers of help.  It has made this so much easier to get through.

Ena Make Sean & Leah

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10/16/11    2:50pm

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 sometime 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

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10/18/11      1:50pm

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 since of humor and of course his FAITH.  He is the same ol’ hilarious, God lovin’ genius.  :) 

So I will keep you posted but cross you fingers that we are on the road soon!

Blessing!

Ena, Mark Sean & Leah

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10/20/11   12:56pm

Hello all,

I can’t believe I am sending out another update!  But here we are, back at Scottish Rite.  Sean started to run a fever and by late last night we were admitted into the same room WE JUST LEFT.  After blood test showed his white blood count way out of whack (proof of an infection somewhere) they had to do a spinal tap.  :(   The good news is the first results of the tap show no “germs growing in the fluid” so that leans the doctors towards “Chemical Meningitis”.  A second test will confirm this tomorrow morning.

Chemical Meningitis is something that can occur after a surgery on the brain or spine.  I am not going to provide any web links this time because my doctor suggested I NOT go online, he said that junk will just scare me for no reason.  (I like that guy)  I can tell you the very short version of what he told us though, we will need to put Sean on a strong regiment of antibiotics and keep up the steroids (AAHHHHH!) for a few days.  Translated that mean he will eventually get over this but he needs to stay here for at least another night or two.  My understanding is that this is less severe than a bacterial meningitis and the threat of long term effects is minimal if any.

Needless to say Sean is feverish and very achy.  Today we are just trying to keep him comfortable (with the help of a few drugs) and let him sleep this off.  He is so amazing,  I keep waiting for him to break-down already but he doesn’t.... which makes me look really bad because I have about 20 times now!!!

I know all your prayers have helped him get this far, please keep them coming so God can continue to carry him (and us) through this.   Thank you for all that you are doing for our family, I know I have said this before but we truly do draw strength from your words, prayers and actions. 

God Bless!

Ena, Mark Sean & Leah

PS:  This morning we had to move rooms because the construction noise on the floor above was driving us all crazy... guess what.... the construction work followed us to the other side of the wing!!! 

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10/21/11  10:35pm

We made it through another day.

Just wanted to drop a quick note because I know so many of you have been trying to contact us.  Sean is slowly getting better.  We had some really good moments today and unfortunately some really bad ones as well.  I think this meningitis crap has caused him more pain than the brain surgery!  The day is ending on a up note (I hope) so I am positive about tomorrow.

So many of you have asked what you can do or bring and it is such a comfort to know everyone is there.  Please know that your prayers and thoughts are enough right now.  However.... I am brewing up a little home coming surprise I would like to do for Sean.  I will let you know more as soon as I find out when we are going to get out of here.

Many of you have also asked about Leah.  She is a great little sister and for the most part is doing ok with all this.  She has moments when she is the little nurse and tends to Sean’s every need and then she has moments when she is totally over it all.  What can you expect... she is 9!  She spent all day today with the volunteers in the art room and loved it.  She constantly ask if it is ever going to be “like it was before”.  My go to answer..... who knows, with God’s help it may even be better!  :)

A dear friend, and one of the leaders in Sean’s drama club, set up a facebook group for Sean.  Here is the link if you would like to join.  She is posting all my updates and many have left wonderful messages for him.  https://www.facebook.com/#!/groups/220288148033662/

Sean is sleeping soundly now and I need to try to do the same while I can. 

Blessing,

Ena, Mark, Sean & Leah

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10/24/11  8:07am

Hi everyone,

Ok, so the doctors are trying to decide if we can go home today and finish the antibiotics there (they have to be administered by a home nurse) or if we should to stay here for two more days to finish them out.  Let’s pray they go with today.... Sean and I both are starting to feel the walls closing in around us!

He is doing much better.  We were out and about the hospital quite a bit yesterday in the wheelchair which was nice and helped the day go by faster.  The staples were removed yesterday and now you can’t even tell where the incision is (they didn’t cut his hair for the surgery).  His only complaint is his legs and feet are killing him and he can’t sleep with the constant pain.... a symptom of the meningitis that might take days/week to end.

With our “departure” date always changing I wasn’t able to plan our welcome home surprise but I promise we will find a way to celebrate Sean’s recovery with all his friends and family.  :)  Many of you have asked about visiting once we get home.  He would LOVE that!  Give us the first day to get settled in and then we should be fine.  I recommend calling first to see how he is feeling.

Pray for good news today and I will keep you posted!

Ena

(PS  We finally made it home this day!)

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10/29/11   11:29am

Well it has almost been a week since we have been home.  What a busy week it has been!  Sean said to tell you he is very thankful for all the prayers, cards, gifts, meals and visits..... they all mean a great deal to him.  He promises to respond to all the emails and letters as soon as he is able to type again (or I find the time to let him dictate the typing to me).  ;)

Some highlights of our first few days home.... 

We finally got off the IV Wednesday!  We were both thankful for that because that meant no more late night “bottles” as Sean called them.  He is still on the steroids for at least another 5 days which means he will still be an eating machine for a little while longer.

Hallelujah... last night was our first night of pain-free sleeping!  He woke up so happy today.  Let’s pray this continues.

Friday was Sean’s first day of rehab and boy did they work him!  He will go everyday from 9:00 – 3:00 (WOW!) and his day will consist of a regiment of speech, physical and occupational therapy with a little school work mixed in.   I was with him on the first day to get to know the therapist and help them understand Sean’s abilities prior to the surgery and his goals.... but now he will go on his own.  I am not sure how long he will have to go to the full day rehab. They will finish their assessments early next week and give us a goal date.  Given what I saw yesterday, I expect it to be at least a month. They gave us a cane to take home yesterday and he is totally enjoying his new found freedom around the house and neighborhood. 

Yesterday was one of the first times we were actually told realistically what to expect.  In a nut shell it looks like at least 6 months to a year before he is capable to do all the things he could do before.  Physical abilities (walking, running, writing) will probably come quicker but speech will take the longest.  They explained it as the brain being under construction, it is having to re-wire the routes it use to take to get things done and this can take a lot of time to complete.  His brain has to literally think about what to do before he can do any normal task....this takes a great deal of mental energy so stamina also plays an issue on ones ability. 

You would think the time frame would be devastating to Sean.... but not our Sean.  He was simply happy to be able to try the everyday things with the therapist and was beaming with every new accomplishment.  Who knows, he may just surprise them all and blow those estimates away.  :)

Something to laugh at:  When Sean was first at the hospital they took his weight and measurements....he was 6 feet 2 1/2 inches and 142 lbs.  Yesterday they did it again at rehab.... he was 6 feet 3 1/8 inches and 157 lbs!!!!!  WHO THE HECK GROWS DURING BRAIN TRAUMA?!?!?!  The weight is pure steroid induced hogging I am sure, but it looks like the brain hasn’t forgotten how to stretch that boy out!

So we have a long road but we remember every moment how blessed we are to be on this road... I don’t even want to think of what it would have been like had we not found this tumor when we did.  Look at what He has already accomplished... Sean’s every ability now and to come is proof of His power.

Blessings,

The Hackaday Family  :)

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11/14/11  9:18am

Hello everyone,

Well, I was planning on writing a final update email about Sean’s continued recovery, his birthday this past Thursday and only positive stuff but I am afraid I have some yucky news too.  We have been having issues with headaches and fever since Tuesday and yesterday the headaches got so bad we went to the ER.  They did a CT and blood work which all turned out fine but they kept us here for “observation” overnight.... I think that is their way of saying “we have no idea so stay here just in case”!  I am waiting for the doctors to come and give us an update this morning.  Sean is sleeping soundly.

I can’t help but wonder if this has something to do with getting off the steroids.  He was doing great until Tuesday which was his first day off.  Since then he has had off and on fever with awful headaches, terrible fatigue and pronounced weakness in his right arm.  Maybe it is steroid withdrawal or the steroids were masking an unknown infection.....again! 

Anyway, let me tell you some good news.  Thursday was Sean’s birthday and we’ve been celebrating in little spurts all week with family and friends.  His grandma/pa gave him a huge Lego model of an old classic VW and, to my amazement, he put that 1300+ piece thing together in one day!!  ALL WITH ONLY HIS LEFT HAND because his right shakes uncontrollably.  I attached some pics of the model.  It is very cool.  Notice the lava lamp in the far corner, on the other side is a potted green plant.... hmmm I am not saying anything but it is a 60’s VW.  :)  (Couldn't post pics on notes but you can see them at www.facebook.com/groups/220288148033662)


Please pray for answers and continued healing for Sean.   I will keep you posted of any updates as soon as we know.

Ena 
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11/14/11    11:25 am

Hello again,

I hate it when you have to pick the best of two evils....  According to the doctor, Sean probably came off the steroids too soon, either causing side effects from the withdrawal or allowing the residual symptoms of meningitis to be felt.  Turns out the symptoms can last up to 6 weeks.  So we are back on steroids for 5 days. 

Hopefully it will be just for 5 days, long enough to let his body get back on track.

Haven’t heard about going home yet.  I wouldn’t think we would need to stay another day?????

Thanks for all the prayers!

Ena

3:15pmOn our way home!!!!  :)
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11/22/11   5:15pm

Hello Everyone, 
  
Here I am again.  You know when this all started I thought I would just be sending out an email or two every now and then.... and for two or three weeks at the most.  But I should have known Sean would keep it interesting for much longer than that!  :)  Maybe I should have done the Caringbridge thing after all.  
  
OK, many of you know that our latest attempt to get off the steroids this past weekend did not succeed....again.  The fever, aches and fatigue hit almost immediately and it didn’t help matters that he had a terrible head cold at the same time.  By Sunday we were at Urgent Care with a 102.+ fever.  We were able to go home though once they made sure there was no underlining infection from the cold. 
  
Today we met with his oncologist and gave more blood to check again for infections (fever still here).  Blood work was fine and, after she (his doctor) consulted with the endocrinologist, the verdict is....Adrenal Insufficiency caused by high dosage steroids for long periods of time.  Don’t get on the web, I did the leg work for you:  

Steroid medications called glucocorticoids (such as prednisone, hydrocortisone, and dexamethasone) are similar to the natural hormone, cortisol, which is produced by the adrenal glands. They are used to treat a variety of conditions, including many inflammatory diseases.

Glucocorticoids can slow down the production of adrenal hormones by acting on the pituitary gland, the master gland that controls the adrenal glands.

If glucocorticoids are stopped or decreased too quickly, the adrenal glands may not begin making cortisol again fast enough to meet the body's needs. Adrenal insufficiency may result. This condition usually occurs when glucocorticoid drugs are given by pill or injection, rather than on the skin or inhaled. Higher doses and longer treatments increase the risk of adrenal insufficiency.

In Sean’s case it wasn’t that he came off too fast... he was simply on them so long that his body is not ready to start on its own yet.  They changed his steroid to a less potent type and he will probably be on it for at least 3 weeks or more till his body catches up.  The fever needs to be watched and if not gone by Monday we will need to get back with the doctors.  Because he is for the most part “looking great overall” she is not worried about any underlining infection that would be more than your average viral infection going around this time of year.

Treating with steroids for a steroid problem???  I  know right!  But there is little choice, his body is not doing it on its own and needs help.  This steroid does not “take over” like the other but will carry him along the way.  He is going to be just fine in the long run!!

So Grandma Aggie, you better get another turkey for Thanksgiving cause the boy is eating like crazy again!!  :)

We wish you all a very blessed and safe Thanksgiving!  Praise  God, we have so much to be thankful for!!

Ena

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12/15/11    11:49am
Sean had his first "step-down"in his steroid dosage this week and he is still doing great! Yea!!! Met with the endocrinologist Tuesday and she put us on a 9 week plan to get completely off of them. Slow and easy wins the race :)

Had his first out patient PT yesterday..... they kicked his behind! He is working hard so he can get a release to get back in the pool!!!

Love posting positive updates! Have a blessed day! 

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12/28/11    1128am

Everyone please say a prayer for good news. We go in tomorrow for Sean's 3 month MRI follow-up. I know everything is going to be fine but I still don't think I will be sleeping tonight. Just need to get through this first one..... 

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1/4/12   7:36am


Why is it that when we are in the hospital Sean always wakes up at 6am?! Been at CHOA since yesterday....he woke up around 1am yesterday with a stomach bug and by 3am we were in the ER to get IV fluids and meds because he couldn't keep his steroids down.  They ended up making us stay overnight to keep an eye on him (erroring on the side of caution because of his surpressed immune system). He is doing much better so we hope to go home today. If he can come off the nausea meds and keep down his steroids we are out of here.... pray! 

8:15 pm


Got the "short version" results from last week's MRI while we were in the hospital today. ALL CLEAR!! Will get the full details on the 11th when we meet again with the onoclogist. I would do my happy dance but I am just too sleepy.... you guys dance for me. :)   Oh, and we are home now!  :)

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April 11, 2012                    5:05pm

Hi everyone,

Today was our 6 month mile maker!So, I am sure you guys want to know, where is  Sean now (I mean besides taller and
heavier)....

 His last MRI was at 3 months (late December) and it
came  out as expected (clear) and we will go for another one in June.

 He accomplished all his occupational therapy goals much
  faster than anticipated and we were able to finish OT this past month.He is back to creating amazing origami and
  his "terrible" art is better than anything I could ever dream of creating.Writing is still a chore....but it wasn't his strong suit to begin with!:)

 He still has about 3 months of physical therapy but he is conquering all those goals ahead of schedule as well.His
balance is greatly improved and he can  even dance with his CFT drama club!The  only time we have to really worry is when he gets too fatigued, then he is a  little wobbly.

 Speech is our tallest hurdle but even that is hugely improved.He will probably have another 6 months or so before it is 100%.Therapy should only last another session or two and then it will be up to  him.Funny, never thought I would  encourage my kid to talk more! 

School started back for Sean in mid-January and he is 
doing much better than expected (guess you have gotten used to hearing that by now).  At first, retaining and 
comprehending were difficult issues and he relied heavily on audio and mp3 versions of his curriculums; but now he is reading on his own and able to absorb  almost as much as before the surgery.  We  have a lot of missed time to make up but we are going to take it one day at a  time.

 As far as the adrenal insufficiency, we are facing that 
 head-on just like everything else. He took his last “planned” steroid on Monday.Yea!!  Today we got a message from  the doctor regarding his blood test last week and she said his numbers were  better. Then she added “they are not  where I would have expected them but they are better.”  ???  Not sure what that meant so I left a message  myself requesting more details.That  might explain why he still has issues with mental and physical endurance (his  only real problem still bothering
him).We will have an all-day blood test at the end of the month that will test  once and for all if his body is working
on its own.

Everything is getting back into place and we can only look back in amazement at how blessed we are.  Today (along with all the letters and notes of love from you guys)  I  read all the emails I sent out during Sean’s ordeal and I cannot believe what  this kid has gone through.  Sean went  through more anguish and pain than I could have ever imagined during those two weeks in the hospital.  There were nights  with the meningitis that I was beside myself begging for a way to comfort  him…but yet in the morning the first thing out of his mouth (after “order my  breakfast”) was “how are you?”!!!He  showed real courage and although he has  pretty much forgotten the pain, I hope  he never forgets the journey.

 I close with a personal note to Sean:  Sean, your father and I are so very, very  proud of you! Anyone with weaker faith  would have cowered at the hurdles you had to overcome or
would have questioned  why this was happening to them. But
not you, you never doubted God, your faith or yourself. Instead, during this time of pain and  suffering, your confidence in His power and your own abilities grew stronger.  You and I talk often about how God is  going to use you to touch others but it is quite clear He already has ….starting  with me.  You’re our hero!

 Thank you again for all your prayers and continued care!

 Ena