Dream Boards

2014 is coming fast!  Funny, but this year has flown by faster than any I can remember!  Maybe because it's been a full year.

Looking back, the highs and lows are many.  From hospital stays and treatments, waiting for more information, and our fun with friends and family, we've made a lot of unique memories in 2013.  Even still, I'm looking forward to a bit of a different year to come in 2014, hopefully I can help that along.

A friend of mine shared an activity she does with her son before each new year.  Together the two make "dream boards" which pin point exact goals for the upcoming year.  She even has some questions to help the brainstorming process with what to place on there.  Then, throughout the year, she not only knows what sparks his interest but can actively help him work towards achieving his dreams for the year.

I just love this!  Not only can I not wait to do this with my kids, but I'm excited to write my own!  Here's to a 2014, filled with hard work and dreams come true.

**Some Dream Board Prompts**

Something I would like to learn is

Someone I want to be more like is ___________ because

Some place I would like to visit is

A new food I would like to try is

A good deed I would like to do is 

One book I would like to read is

I would like to try to be better at

I would like to change  (a habit)

At home I would like to

At school I would like to

Finding Christmas

Celebrating Christmas with young kids is such a gift.  The excitement and magic is contagious.

This year the spirit has taken a while to develop for me...between not feeling well and not being able to do all we usually do in the span of the season, it just has been different.  I never really understood the missing jolly vibe until now.  Honestly, I was I couldn't say I did.

We finally put up our tree and decorated over the weekend.  Again, while we didn't pull every single bin up, nor did we put anything that could break on the tree due to our crazy kitten, I couldn't help but get warm inside watching the sparkle as the kids pulled out favorite ornaments and Cole shouting "ho, ho, ho" every time he saw a Santa.

It's funny how something so simple can make a difference.  It is through the kids I'm trying to find and hold tight to Christmas this year.  

As I sit here this morning waiting for the army to awake, the smell of cinnamon rolls is dancing through the house and with the tree, it's as if I've been grazed by Cupid' s arrow, only one with prancing reindeer, a man in a red suit, and a baby who saved the world.

Preparing to rejoice in all the gifts of the season is merely a part of it, I've learned that this year.  Sure, it is still important to pull the magic together, but there is so much more.  While I've had to slow down, almost to a halt, and yes, I never did finish shopping or getting the stamps for the cards, which are actually ready to go, I'm ready.

I'm ready for being in the moment.  I'm ready to celebrate the gifts our Lord has given us, surrounded by family.  I'm ready for miracles, because in this year, I've learned even more about love and the angels around us, in our lives every day.  These are the true gifts of this season for me, and in stopping to remember how blessed we really are, I've finally found my Christmas this year.

May you have a day filled with love and peace.  Merry Christmas to you and your families, from all of us here in Buffalo.

Step Back

Busy week ahead.  Cole has his infusion at the hospital and the girls have off for parent conferences.  At any other time, I'd be thrilled to have a few extra days for crafts and cookie baking.  Right now, I'm wishing it weren't Christmastime.  Given that this time of the year is my absolute favorite, that's saying a lot.  I just can't do most of what we do, and that has taken so much out of the holiday season for me.

The end of last week has taken a toll.  Late Thursday, the pain and usual symptoms started again.  Luckily, Cole was more than willing to snuggle, watch Polar Express, and read books on Friday.  I don't think I could have kept up with him otherwise!

Before now, I never thought much to severe, chronic pain.  Not only do I give people who have struggled with pain for years lots of credit for muddling through, as all I want to do is lay curled up in a ball, but I think about Cole, and all he must have been feeling for so long.  I am not a pill popper, I'd rather sleep off a headache than take a Tylenol. And with this, Tylenol doesn't do much of anything, the constant dull ache and intermittent stabbing before feeling like your insides are being ripped out is the worst sensation I have experienced in my life!  It is hard not to think about the pain I'm feeling now, and just how Cole must have been feeling when he was younger.

While I can't change any of that, and now he can tell me when he is hurting, it still breaks my heart that as his mom, I maybe didn't know or do enough for him at some point.  I will never really know for sure.  Yet I do know, he is doing so very well, which brings me great joy this holiday season!  The only gift I want this year is a happy, healthy family.  After this year's journey with Cole, I am over the moon with where we are!  Now to keep him there.  And to hope in the morning, he'll be ok with another snuggle day, since that is medicine that will get me through tomorrow.

Kindred

Just as amazed I am with how quickly I deteriorated, I'm astonished at the pace of this recovery.  Never did I expect for it to be overnight, yet I thought with positive thinking and effort I'd be back to normal by now.  Getting there, but I've still got a way to go.

With the time to sit, I've been reading more than usual.  

Jumping right back to my old roots, I'm tempted to get back in my classroom, to talk about conflict and the idea that art imitates life, as readers we can connect to characters and their struggles, even learn from them.  

So many different plot lines, yet beneath them all you don't have a story without a central conflict.  

Sure, reality is not nearly as drama-filled as some of the novels I've recently indulged in, but there are speed bumps in all our worlds, ways we've been derailed or detoured unexpectedly.  Like our literary heroes, it is from these challenges we learn our lessons, while we grow and change as individuals.  More often than not, just as you may temporarily lose faith, I've found you discover and build more strength and character making your way through it all.

In life, everyone has their struggles at one time or another.  All vary, yet to the bearer, none are easy to carry in the middle of the storm.  No matter what your battle may be, remember, there are others around you who have been there too, open your eyes, you have kindred spirits who understand.  And in the middle of the night, you can find any number of characters who may make your journey seem like a piece of cake.

Happy Thanksgiving

Two weeks ago I was writhing in pain in a hospital bed, today I'm snuggled in at home with my family watching the snow flutter softly to the ground.  Talk about a big difference!

This Thanksgiving week I can't help but tear up a little when I think about just how much I have to be thankful for.  Yes, my life is far from the path Nick and I paved, even further than I expected, but it is blessed.

As we all slow down, gather together, and give thanks, I hope you have the chance to really look around, take it all in.  Even if the day is hectic, I'm learning just how important it is to savor the moment for they are fleeting and you just don't know what tomorrow is going to bring no matter how well you plan.

So while Gwyn steals half the olives before dinner, and Paige manages to stealthily hide the cranberries next to her plate, I will be silently thanking God for so much I'm come to take for granted.

Enjoy this week with your families as you give thanks for all of your blessings whatever they may be.  Know that I am thankful for each of you, all of your warmth and encouragement gives me so much strength on days when I struggle to stay strong.

Dreams

The last few weeks I've had quite a bit of time to think.  My musings keep coming back to dreams.

For as long as I can remember, I've been chasing a dream of some sort or another, making a goal to get there.  Some, like being an astronaut, fell away as I changed, while others remained.

I've always believed that no matter what, with hard work you can make all your dreams come true.  I'm not sure what that makes me, other than a girl with her head in the clouds.

In my life, I've watched everything I've wanted materialize.  I found the love of my life, started a family, had a successful career, and goals to move forward both personally and professionally while surrounded by loving extended family and friends.  I've also had to make choices to stop, put things on hold indefinitely, while at the same time redefine and accept myself, including all of what I cannot change despite every fiber in my being wanting to.

When you are holding your dreams in your hands, you never imagine they can slip through your fingers dripping like sand through an hour glass.  Each tiny grain that falls elusive, fleeting invisibly, silently before your eyes.

Then again, the ebbs and flows in life are dynamic, so naturally, aren't dreams?  Instead of fleeting, they are transforming, shifting as trickles of sweat and tears are added, ready for shaving and sculpting no longer dust to be lost in a gentle breeze, but solid and malleable.

Langston Hughes has been whispering to me the past few weeks, from deferring dreams and holding fast to them, I'm trying.  For now, I've opened my eyes, while I have my dreams, the most important are wrapped up in my husband and children who breathe life into my world and really are my dreams come true.  For now I want nothing more than to help them find and hold fast to their dreams any way I can.

Fall

While I've updated quite a bit on Facebook, it's been tougher to get here without my laptop.

Cole has been doing wonderfully!  He goes for his remicade infusions every eight weeks, and has been taking his various meds without issues, thanks to daddy.  Really, we couldn't be more thankful for his progress and current stability in terms of his Crohns.  

Meanwhile, we are still waiting for official news about the different studies in Texas.  It seems waiting is just our status quo, which honestly, we never imagined would leave us in limbo for so long.  So while we wait for the next set of directions, we still just take one day at a time.  As simple as it sounds, it's still the best way I've found to wrap my mind around it all when I'm frustrated with the unknown.

As for the rest of us, the girls are doing well in school and very excited for the holidays.  We've had a rocky fall, as my own ibd reared its ugly face, and I'm still working to recover from my time in the hospital.  We've been lucky to have family and friends do so much to help.  Never did I imagine at 36 I'd be struggling to walk up stairs or take a shower.  The good news is that each day I am getting stronger, so I can't complain, there are many who have much harder roads.  

I do hope to write here more frequently, there just hasn't been much to say.  For now, we are doing the best we can, having faith that this journey' s purpose will make sense down the road.

Company

Taking a leap into something new is never easy or without some kind of jitters.  Yet, when pieces of a puzzle begin to fall into place, taking that plunge is beyond refreshing.

Less than a month ago, I decided to sign on as an Independent Consultant for Tastefully Simple.  This is something I never thought I would do.  Yet, here I am, prepped with parties booked, ready.  Funny, in so many ways I feel at home, as if I were preparing my classroom for the new year.  Which, I must say, I am missing more than ever.  It's odd how you can feel you were ready to let go yet have such strong feelings of loss so much later.  I'm happy to have a distraction from Cole's medical saga and the nagging to be back in "my room."  

For those of you encouraging me and supporting me with this new voyage, I deeply thank you.  I may add a Tastefully Simple tab within the blog for those of you who may be interested.  For now, if you are, please visit www.tastefullysimple.com/web/lhuson to see what Tastefully Simple goodies appeal to you.  

TS

So those of you who know me well, or follow Catching My Breath on Facebook know about my latest endeavor.  I needed to leave my teaching job in order to take care of Cole and ultimately avoid possible exposures to the very pathogens his little body cannot combat.  While I have been writing, mostly for myself, and even looking for reputable online work, I have decided to pursue another path while my hands are tied.

I have become an independent Tastefully Simple consultant.  Overall, I hope to be able to have a little bit of a Christmas fund after paying off some other bills.  This was really kind of a spur of the moment decision, and after some thought, it made sense to try rather than question what if this or that.  Truly, I needed to try.  And for me, to have an outside goal, is a good thing.  So for those of you who love Tastefully Simple, I'd love to help you with your orders and even help you host a party if you'd like.  /Please email me at simplylizhuson@yahoo.com if you'd like to be placed on my mailing list, or just want more information.  In addition, you can follow me on Facebook at https://www.facebook.com/simplylizhuson.

As always, I deeply appreciate the support so many of you have given us each time our path winds a new direction.  Just trying to keep steering this vessel so we continue moving forward.

Hibernation

So while we were going to wait to do the tonsillectomy until school started, the multiple choking issues each day is leading us to want to move a bit faster.  This is the season we can do a little more, and honestly, we just want to savor it for a little longer before the great hibernation begins again.

On the bright side, Cole will be participating in a basic research study looking at the long term effects of young patients on Remicade.  In the end, the researchers will follow him for 20 years!  I always wondered where they found people for such long term studies.  Guess when you meet the criteria and are right there, it makes sense.  In my opinion, anything we can be a part of to provide more information for someone else to help them make an informed choice is certainly easy to say yes to.

The Plus Side

Great GI appointment. A small amount of weight gained, great labs minus one hiccup, and sustained remission.

Really thrilled with positive news!  Waiting so long for other news starts to eat away at me, so having some good news high to ride for a bit makes me feel great!

Next appointment we will schedule his next scope.  This way he is good and healed from his tonsillectomy.

Off for a walk to watch all the construction trucks building....a great reward for our little man after so many appointments this week!  Hope you all enjoy this beautiful day as much as we are!

Another Procedure

So I pretty much expected today's news.  Cole's tonsils are at a plus 4, so large in his little mouth that they really are the prime suspect for all of his gagging, snoring, and night disturbances.  After discussing with his other specialists, we will be taking the first available date for the procedure after yet another frightening gagging incident at dinner tonight.  As much as I'd like to wait until school starts so it is a little quieter at home, I think his ENT is right, the sooner the better.

I think this little boy wants to get his surgeries in before he will ever remember them.  He's sure good at keeping me one busy mama!

GI appointment first thing in the morning.  Looking forward to what they have to share with us.

Bravery

When I think of our journey with Cole, I know it has changed me, maybe even made me braver than I thought I could be.  I am not the same person after starting on this path, and I didn't realize how different I was in some ways until an old friend I hadn't seen in a while pointed a few things out.

Still, when I think about Cole's battle, I fully understand there is only a certain level of bravery a mom can have, that it is my little man who truly is the one who must be stronger and braver than I.

This being said, I know another young lady, filled with strength and drive, who I admire deeply for her ability to face her cancer battle with dignity.  Her name is Katie, she is my niece.  I just wanted to share her story with you, since it is inspiring and heart-warming.

Please take a few minutes to watch Katie's story, maybe even check out teenslivingwithcancer.org, the organization she has been working with that has helped connect her with other cancer patients.

If she can make it through this, she can make it though anything.  Such a great mantra!

Living

As far as Cole's primary immunodeficiency is concerned, we are still waiting for news from Houston.  While the the initial study is looking for the root cause of the nk cell dysfunction, another is mapping all of our genomes.  From what we've been told, this can take a bit of time.  

For now, we are enjoying our freedom to be outside, to go for long walks, hikes, and  even do a little fishing. It is nice to enjoy nature, the enveloping warmth of the sun, the crisp crashes awakening the sleepy pool waters, moments to savor, to temporarily pause our worry.   And it is in these moments, we are all learning lessons in living, to enjoy today, for tomorrow is filled with the unknown.  

Infusions

For the followers of Cole's Facebook page, some of this will be old news, yet I've not shared everything here, so I'd like get the blog back up to date.

After Cole's hospitalization this February, we were given two options : remicade or surgery. Neither were our idea of what we wanted for Cole, nor a choice we expected at this point in time.  In the end, we chose to try the remicade infusions.  I have to say, I was so worried initially, yet the drug itself has turned Cole into a different kid.  He has been gaining and maintaining weight unlike in the past.  He has finally hit 28 pounds, which puts him on the growth chart!   In addition, his energy level is through the roof!  Nick and I are just thrilled with how this med is working, honestly, it's almost like watching your baby take their first steps kind of giddy.

Cole did well during the induction phase of his infusions, yet the last two have not been picture perfect.  During both, Cole experienced a reaction, which can be common with remicade, like chemo, the more that builds in your system, the more probability there is for a reaction.  While both incidents were frightening to watch as a parent, the immediate action and supervision of his nurses and doctors calmed my nerves.  I truly can't say enough about these professionals and and the level of care they have given our son, not to mention the the extension of their warmth to me when I am with Cole.

I can't say I'm looking forward to his next treatment in August, when I am there, I'm a ball of nerves.  Yet, I am looking forward to my little bean reaping the benefits of a few hours of discomfort.

Beyond Before

before you judge

me

take a look,

wear my shoes

stop

think

if forced                                             

beyond

comfort,

life known

before

now

grim reality

leaving

The Bubble                                        

accept the cocoon?

flip switches of

identity, security                               

off?

epic metamorphosis

unknown tomorrows

for a boy?

                                                            or Not?

10th

Today, my husband and I are celebrating  our tenth wedding anniversary, which I must say, has been one heck of an adventure.  That said, I've always been fascinated by the notion of immortality of love, as Shakespeare has succeeded in having his muse live on forever through his sonnets.  Today, this simple post is merely an attempt at the same, in the hopes that

       So long as men can breathe, or eyes can see,
       So long lives this, and gives life to thee.
                                           - Sonnet 18 W. Shakespeare


Falling is easy
Swimming upstream        
                              dodging obstacles
Challenging.

Mountains become hills
Quicksand
                              concrete
Solid

My rock
Sun
Stars
                              dreams.

You are
Paradise
                              found
Lucky me.

Our uncertain world
perfect, clear
                              simply                  
from love



Nick, your love has been the greatest gift in the world, one which has grown exponentially as time has passed.  To love and be loved has brought me so much happiness in good times and bad, in sickness and health, and for all the days we have had together, and in all the days to come.  While our path has twisted away from the expectations we started off with ten years ago, and the ride has been bumpy at times, I wouldn't have it any other way if I couldn't have you.  Happy tenth!

Enjoy the music.

Break

I've realized it has been some time since I have really posted here.  After running into a few people who have said they've been worried something was wrong, I know I need to get back on.  Since the blue screen of death to my laptop, I've not been on the computer as much, and as much as Nick's Kindle is cool, it constantly deletes what I type into the blog as I go, rather frustrating! During this break, I've been getting my own health back in check, physically from my IBD, and mentally by reconnecting with the musical side of my life with the guitar, not to mention my little writing project, all of which have kept me busy in my spare minutes.

I promise some more updates, and pics.  If I ever get my scanner going today, I have a celebration to share with you later today!

Much love to all who keep following and supporting us.  <3

Tent

CT done and blood from all of us heading to Texas.  Long morning has left us all a little tired.   Results from the CT should be ready tomorrow.  Fingers crossed.  For now...it is naptime in the living room tent.

Bursts -2

After about an hour on the phone with our local immunologist, my head was spinning.  At the end of our hospitalization during the flare, gi had consulted her about their new treatment plans for Cole.  In turn, she needed to discuss all aspects of the next steps with Dr. Orange in Houston.  As the expert, he was the one who would really understand how all his Crohn's treatments would impact Cole's immune function.

In terms of the 6mp, we no longer had to worry about the repeated blood screens and frightening warnings, as taking this drug is not an option for Cole.  The  possibility of bone marrow suppression could be devastating, leaving him at greater risk for infections from the very class of viruses his body cannot combat.  In his opinion, of the suggested courses, Remicade infusions would be the best route at this point.  However, Cole would need to also be placed on an anti-viral regimen to add an extra line of defense since the treatment is an immunosuppresent.  In addition, Cole would need a prophylactic antibiotic since there are risks of mycobacteria infections doctors are concerned about as we take this path. 

From there, we learned there was other news.  After looking again at the CD16 studies, they ultimately determined his cells did not meet the characteristics necessary to confirm the marker findings from the fall.  As a whole, they did meet some of the criteria with cytoxcity but varied as the nk cells cannot function with Cole's B cells to fight disease cells.  

With all the developments regarding Cole's gi issues over the past few weeks, and the impending commencement of the medical infusions, the doctors in Houston are doing their best to move quickly to find the underlying cause of his nk cell dysfunction.  As wonderful as our gi physicians are, the fact that they have slight doubts that this is really Crohn's makes me worry about using the harsher medicines on my little guy.  If he truly needs them, of course, but if he really needs something else, I don't want to subject him drug infusions if ultimately they are not in his best interest.  Our immunology team shares this concern.  Which is also why they are screening Cole for every known primary immunodeficiency that has been ever been diagnosed.  They are optimistic about a recent discovery called STAT1, which may be where Cole finally fits.  Of course, there is also the slight chance Cole is a new pi himself.

As researchers move forward in their continued study of Cole, they have also asked us for more blood, not just from Cole, but Nick and I, as well as the girls.  This is for another study of whole-exome sequencing and genome mapping.  By creating our genetic family tree they can compare and look at every last genetic deletion, mutation, and familial pattern they want.  In the process, we have to choose how much we want to know about their findings that may be unrelated to Cole's disorder, but our own make up.  Never would I have elected to know about what my children or I were predisposed for, yet with the information literally to be at the tips of my fingers, it is tempting to know.  Of course we need to learn all we can about Cole, and if the girls have anything underlying related that may be lying dormant, waiting to appear, we want to know.  But for myself, I'm not so sure.  

For now, we are getting ready to tell the girls they need to go to the hospital for some tests.  I think Gwyn will be fine, but for Paige, who is deathly afraid of needles, I am apprehensive about her reaction.  Nick thinks she might need a kitten to avoid a repeat of the 2010 flu shot fiasco.  Don't worry, I will post pics if we have a new fuzzy friend here!  To be entirely honest, I am grateful he will be there to help, since I don't think I could do this round of blood work with all the kids on my own.

For now, my mind is tired, reading about all the various drugs and their side effects.  Learning what to expect with infusions, and thinking about all the implications of the next set of results has been draining.  As surreal as this has felt, as often as I wished to wake up, appointments remind me it is all so very real.   At the same time, I am fascinated every day with all the leaps and bounds in medicine.  It makes me want to be the one analyzing the cells and unlocking the new puzzles.  Wonder how much school that would take.  So thankful for all of our incredible teams here in Buffalo, and from around the globe, they are our heroes and they may not even know it!

I hope I have explained clearly enough about where we are on our road, and that it is make some sense to all of you who love and support us.  It has been complex, yet the complexity seems to have an infinitive means of expansion, which can be hard to follow.  For now, the information we've been waiting for is so close we can taste it.  We are hopeful and pray we will know more of what it all means and what is best for Cole very, very soon.         

Bursts - 1

Throughout this journey, really any medical journey, there is a great deal of waiting followed by bursts of information. This week the bursts exploded one after another like a firework finale!

To begin, we went to see gi to follow up after Cole's hospital stay.  I was thrilled to see he had actually gained over a pound since we'd been  at Children's.  Of course it helps that the steroids seem to make him eat like a horse.  As always, our doctors there were outstanding, not to mention wonderful regarding my apprehension and  questions about our next steps.  When Cole has finished this course of prednisone, they have recommended he begin the drug 6mp.  While the side effects can be harsh,   his physicians believe the benefits outweigh the risks.  I asked them honestly about our alternatives if we chose against this treatment, and basically we could be looking at Remicade infusions or removal of his affected tissue, the latter being what we want to avoid.  Before we could  move ahead with this new treatment, we needed to hear from our immunologist to weigh her thoughts about this drug in terms of Cole's nk cell dysfunction.  In the meantime, both the fellow and resident gi physicians felt a lump during their abdominal exams on Cole.  To get a clearer picture, they have ordered  a CT scan, which we have scheduled at the hospital early next week.

As Cole napped after our appointment, I sat reading the information gi recommended about 6mp.  The frequent labs to monitor both liver issues and bone marrow suppression Cole's doctors discussed in the office echoed in my head as I read more.  If they needed to check levels so often, while helpful, this drug could have very negative consequences.  Still, the other alternatives didn't offer much sunshine in our impending decision either.  How can you choose to give your child a treatment where one of the first warnings you read is about the increased risk of developing a fatal cancer from using it?  As Nick and I talked about what we were going to do the phone rang.  It was immunology, with news that affirmed every step I've doubted over the past month.  Talk about surreal, it seems we've entered the pages of a science fiction novel!

For now, the young prince calls, thus the saga must pause for the time being.

Homeward Bound

Here until my sleepy dude wakes up.

Hoping they can send the script downstairs to be compounded so we don't have to wait long.  Now to remember what I have to cook tonight.

Dinner

As of now, if this boy drinks, we may be home by dinner!

Overnight

It has been a treat to sleep a bit tonight.  Cole has not only been sleeping well, he is not laying on me, which in turn has give me the most restful night in almost a week.

Due to a few bad movements and his reluctance to drink much after yesterday's nap, Cole was placed back on his iv fluids.  While we were told we may head home today, after his evening output that is now in question.

Thank you all again for your support.  To my goodie fairy Nicole, the treats are heavenly and the Play Doh is quite a hit.  Much appreciation for bringing them here. Everyone's prayers and messages are uplifting our spirits, once again, mahalo.  Please send some good vibes to my friend Jen as well who has had a bit of a weekend herself and could use them.  Many hugs to her and to you all.

Sunday

Fyi: things are looking up, but we still need to stay until they are sure everything keeps moving in the right direction.  We might be able to go home tomorrow if ings keep going well.  We will have to come back for a scope see exactly what is happening.

Cole has been pretty tired this afternoon and is sleeping now.  As expected, MissyMissy, our nurse, is wonderful.

Girls had a great weekend with Grandma and Papa, but are happy to be home.  Willow even loved her Labrador day with Maya.  She needed to sleep all day to recover from her excitement.

Looking forward to resuming a normal routine at home soon.

Groundhog Day

After a long few days, Cole seems to be slowly responding to the prednisone.  In addition, we've both slept well for a few hours tonight, which is more than I can say about the past few evenings.

This afternoon he did manage to stealthily remove his iv line from his hand.  He was awfully proud of himself, while we were stunned not only by his successful tinkering, but by the gory aftermath.  Needless to say he was thrilled to finally be free in our temporary home.  Since he was doing well, the doctors felt they could wait until the  morning to reinsert.  I can only imagine how happy he will be around 5AM.  I will  have earned my coffee, that's for sure!

Overall, we are all in good spirits.  Tired, but optimistic that we've turned another corner.  Once again, there aren't enough words to praise our incredible nurses up here in hematology/oncology.  From Michelle to Trina and now Lynne, you have all been amazing.

On the homefront, we miss the girls, and owe them their report card celebration we postponed on Friday.  Being Gwyn's first one ever, it is a BIG deal.  Picnic jammie and movie night will be so sweet, especially since her favorite Peter Pan will be available for next weekend.  Out of every fairy tale, I wish I could take the kids to Neverland so they would never have to face the grown up tolls of illnesses until they were in fact, grown ups.  For now, the escape in Barrie's world will suffice.

I cannot thank so many of you for the offers of help and the actual help.  Until now, we've done ok, never wanting to impose and really just fine day to day.  It has been a big step from my "I can do it all" way of thinking to accept that I can't always do it all and to let others help.  Believe me, if we are here as the hecticness of the week commences, we start taking you up on your offers if we truly need them.

On that note, it is time for me to head back  to bed.  Sweet dreams to you all.  I for one will be dreaming of my coffee fairy, hoping for a swift arrival of caffinated, warm deliciousness I can savor before taking on whatever adventure tomorrow brings.

S&S

A pretty restless night here.

Cole is up and eating a small snack.

At this point he is still flaring but the amount overnight was far less than on Thursday.  So, to me, we are moving in the right direction.

Short and sweet for now.  I'll update again when there is more to share.

FYI

Cole is finally asleep.  I will be heading there myself.

After phone tag, blood tests, and other cultures, Cole was admitted to the hospital.

For now we are just waiting to see what tomorrow will bring.  Hopefully the steroid treatment does the trick.  I will keep posted.

Labs

Labs came back completely normal, yet Cole's bleeding is not subsiding.

At this point, doctors have a few ideas as to what could be causing this latest flare.  First and foremost, they believe it could be a side effect of the medication he has been on over the past year and a half.  So for now, we have stopped his meds to see if this helps stop the flare.

In the past, Cole was given a course of steroids to help with  flare.  Unfortunately, due to his diagnosed immunodeficiency they are no longer an option as they suppress his system, compromising the rest of his health.

After two days med free, the flare continues.  We're trying our best to keep Cole comfortable.  At two, it is still hard for him to tell us how he is feeling, although he's been irritable, clingy, and refusing most foods.  Since he drinking, doctors feel he is  ok for the time being.

For now, I just feel helpless.  I want to do something to help him feel better, but really don't know what to do for him besides snuggling, reading and playing.  Here's hoping while the winds are wicked today, things inside the house and Cole's little body wane into calm.

Happy news

Sorry about my hiatus, sometimes technology just is not cooperative.

It has been an amazing week in so many ways.  Late Thursday afternoon, we finally got the call we'd been waiting for since October.   The lab results were in from Toronto.  Cole' s IL 10 analysis was normal!  Such a relief to hear good news from a test.  The lab is now moving forward with a whole exome study.  Our immunologist says this will give a comprehensive view of a large  portion of his genetic code, particularly pieces we have not seen.  As they are still trying to pinpoint underlying causes of Cole' s issues, instead of continuing to single out genetic sequences one by one, this should provide faster information.  Now begins the 3-6 month wait.

Houston has started to reanalyze for CD16.  Even though Cole' s sample was atypical, the blood markers still indicate this is where they problem lies.  In this further study, they are hoping to have information to share soon.

In the meantime, Cole is having a pretty significant flare.  We spent yesterday back and forth to and from the lab as we had various specimens they were requesting.  Again, in terms of his blood draw, Cole was such a trooper.  One brave little boy.

So for now, again, we are patient.  So much good medical news this week, and tremendous support from my extended West "family".  Thanks to all of it, I've been able to slow down, catch my breath for a moment, and work on a few of my little projects, which I know are going to be big, just wait.

IL10

I forgot to mention that our immunologist received a message that the lab is analyzing Cole's IL10 tests next.

It's been difficult to be patient waiting for this set of results.  Hope this part of the process is faster than the last!

Well

Yesterday, Cole had an appointment with his GI doctors.  Since he'd been flaring, I was pretty happy that we already had one scheduled.  

As a whole, things went well.  Luckily, he didn't lose any weight, however he didn't gain any either.     In my opinion, the boy is just so busy he burns everything he eats!  The kid never seems to slow down and can inhale two full size pieces of pizza when he is hungry.  I can only imagine what I will be cooking during his teenage years!  

Routine lab work was ok.  Still continued vitamin deficiency issues despite his extra supplements, but nothing was a shock.  We do have to repeat his urinalysis as there is an indication of possible kidney or bladder infections.  GI was pretty calm about it, but after talking with our immunologist, they wanted the labs rushed since he also presented with a very low grade fever during his appointment.

We tried to get his sample last night before the labs closed, but it is tough to get a non-potty trained child to comply.  Everything is ready to go this morning for a lab stop before an appointment for Paige.  Busy day!  At least dinner planned and set to go tonight.  

I will keep you updated on lab results - hoping it was just a fluke and all is fine.

Forward

Just the other day, I came across a quote on Facebook that hit a chord with me.  "Some things are so unexpected that no one is prepared for them."  Boy did Rosten hit that nail on the head!

Not so long ago, the current of my life was calmly flowing within the river I had built for it.  Just as I always expected.  Rising waters were all it took to breech the banks, creating a new tributary for this stream, which I certainly was not prepared for.

While I always felt this redirection was temporary, that the water would naturally make its way back home, what I didn't realize was that this new trickling creek was growing stronger as its own branch, adapting to the surrounding conditions.

Never did I think having another child would result in such a life change for me, taking me from what I knew, where I thought I thrived.  Then again, never in a million years did I think anything would be wrong with one of our kids.  It is a humbling experience to say the least.

As we have made our way over each obstacle in the road, my personal destination was within eyeshot.  There seemed to be a clear path where I was heading back on course.  Only a few unexpected turns would change all of it.

After considering every possibility, the dam in the way was just one that could not be passed.

To pause my career is necessary, the best choice for Cole.  Still, making this choice has been bittersweet because of the "family" I was leaving behind.  My heart broke to have to share this choice with many individuals who have shared the past twelve years of professional and personal joys and sorrows.  After all, my school is one like no other, one giant family, supportive and loving beyond any regular workplace.

As difficult as this week has been, as lost as I have felt, I realized, while in a sense I was moving on, I was not leaving them behind as a part of my life.  After many conversations, I knew, the bonds built in friendship would remain.

As I raft on the rapids in new company, I know the old is not far behind, still holding a place in my life, which fills my heart with love and warmth.

As I take a deep breath and move forward, to paraphrase Dr. Seuss, I will not cry because it is over, but smile because it happened.  And I must say, there is a great deal within my WM chapters to smile about.  <3