Monday, February 18, 2013


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 is naptime in the living room tent.

Sunday, February 17, 2013

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.         

Saturday, February 16, 2013

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.

Monday, February 4, 2013

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.


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


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, February 3, 2013


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.

Saturday, February 2, 2013


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.

Friday, February 1, 2013


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.