The cookie is out of the jar: we are coming back

First some medical stuff:
Nurse practitioner Jenn (aka awesome Jenn) informed us that Dr. F. wants to do another blood check for the liver in two weeks, June 6th.  If the liver enzymes remain high we will have to put Miabelle back onto Actigall, which she doesn't really mind (but tastes horrible).  Hopefully the Actigall will lower the liver enzymes.  Fingers crossed that we can avoid the drama with the liver.  Also, Noelie's mild cold has transferred to Miabelle (it was a question of time), and knocked out V as of tonight.  But we are glad to report that beyond sneezing and some nose drainage, Miabelle has no fevers and it seems, for now, that her body can control and fight the bacterial invasion.  This is Miabelle's first cold in 1.5 years and so far so good and it's a great indication that her immune system is working.  This is excellent news!!

From a developmental point of view, Miabelle is doing very well according to her speech therapist Jessica, who is by far the girls biggest love because every time someone rings the door they scream "Jessica!!!".  Miabelle is speech and developmental wise 100% at her age level, however this does not take into account that she understands Dutch and can even say several words like counting to 10, vegetables and fruits.  So we are happy to report that little giggly girls has fully caught up and is a braineac like her sister Super-Noelie.

So all news is good, we are awaiting the results of the engraftment test done this past week and keeping our fingers crossed that the new cells remain strong at 91-92% or higher.

Now to the less important stuff:
In English there is an expression to state that information has been revealed, it goes something like "The cat is out of the bag".  Needless to say, you don't need to be a foreigner with broken English to ask yourself: What is a cat doing in a bag?  Who ever started this expression was clearly not an animal lover or PETA member and probably on the FBI most wanted list for animal cruelty.  This expression is very disturbing to us, an animal loving family.  To show our respect to the cat world, we are lobbying for a new expression, more cat friendly, with the same meaning.  Something also more child friendly, like "The cookie is out of the jar".  Cause cookie's do belong in a jar or in papa's stomach, whereas cats don't belong in bags.  So... what was the point of our story again?

Yes!!  The big announcement is that the cookie is out of the jar: we are moving back to New Jersey this coming July.  We have signed a lease, and amazingly enough we were accepted, to rent a dwelling in Hoboken, NJ, as of August and will be moving in August 10th.  Our dwelling is in a town right across from -Manhattan making the commute an 5 minute boat ride into mid-town Manhattan.  No more 1.3 hour commutes like before.. Yippie.  Why waste time in commuting when you have two adorable toddlers at home.  We always wanted to live in this town and now, with our values reorganized, we will do what pleases us.

Before I start, we do want to make the following disclosure:
We are making this announcement so our friends and los abuelos, who helped us move out of our previous home in NJ, have enough time to pack their bags and move to another state or country.  In this move 'Mon Capitaine' Vanessa will be in charge, she is a very organized person who, easily, without uttering a word and with one single finger can run an entire military battalion.  It makes me very happy because this time I will not be the one barking orders and running crazy; I see myself lounging on a chair in the back yard sipping a cocktail... sweet dreams.  But, the good friend that I am wants to warn our friends and family to book their flights as soon as possible: the word on the street is that Greece is beautiful this time of year and man is it cheap.  Them poor people probably cannot handle another move of the G-family and this time we have two Pods (moving containers), therefore as your friend I tell you... RUN FOREST RUN!!! 

The move bag to NJ-NY area is good news because it implies that Miabelle is strong enough to be far away from her doctors, her immune system is in good condition and that life can resume towards normalcy.  All we need to control and watch at this point is her liver and start her immunizations (hopefully last step in the process).  We will have to come back 6 months post our departure and then yearly for checkups.  More importantly this is a major milestone for the entire family.  Honestly, we sometimes doubted that we would return home in four, and now we are four and much stronger than before.

The decision to move back was not an easy one and with mixed feelings.  We love NY and miss our friends and family but adore Cincinnati, our home-away-from-home, with our new friends who are just like family.  Life is good here in Cincy with on top of that some very nice people (icing on the cake).  We still have to find someone to tick us off, which in NY happened weekly if not daily (you know them tourists asking where the Empire State building is: "Hellooo!! It is the big building! Now leave me alone."; just kidding peeps, just kidding).   In addition, every trip in Cincy takes about 10 minutes to go anywhere, very few waiting lines (especially in the emergency rooms), good restaurants and the cost of living is considerably more humane than NY.  All this leading to the simple fact that the quality of life in Cincy is very high, and after an experience like this quality of life and family time is key.  So Cincy was such a good experience from a living and encounter perspective (wish we were here for other reasons) that leaving will be by definition with mixed feelings.

Although returning to see our friends and family is our first concern and something we are very much looking forward to, not thinking about work I also offered V to move to Puerto Rico or South of France were colds are relatively rare (no flu), which is good for all of us, and life feels like vacation every day, which personally I think we deserve.  Unfortunately, V objected by saying that we would miss again our friends and family (both from NY and Cincy) to which I rebutted that everybody would love to visit because we would live in paradise.  And who does not like to visit paradise?  Having moved countries my entire life I can say that true friends always remain and often visit.  Then she proceeded with a silly yet important detail to bring my dreaming back to earth: "what about work?". A detail I had honestly and on purpose forgotten.  Work?  Yes, I was not born a trust baby and thus work is an essential part of our human survival.  Waa Waaaaa Waaaaa!!!  So the choice was made for us: Hello NY, byebye Cincy! We are heading back to the NY area so we can enjoy our friends and family in NY finally again and to seek the American Dream (New York, and if I can make it there, I'm gonna make it anywhere... I truly hope so!) for papa.

We are looking forward to seeing all of our friends and family back, it doesn't feel like a year and half but more like an eternity since our last encounter.  We cannot wait to see little Abby and Henrik (kids of our best friends born after our departure).  We cannot wait to see all of our family and friends and just catch up on their lives.  We cannot wait to have a BBQ or go for dinner to catch up on the latest gossip of NY (that is for V of course).  Meet all those people who have helped us with donor events and fundraisers.  And much more.  There are so many people we want to see and so many things we want to do, and now that time is back on our side we have the time to do so.  

So V is departing Cincy beginning of July and I will follow a week later, the time to load up the container and ship it out.  Between July 10 and August 10 we will be staying at los abuelos in PA, which we all look very much forward to.  We have all missed her parents, sister and nephew/nieces mucho (and so did they), and it will give us all some much needed time to catch up and enjoy each others company.  Personally, I cannot wait to eat Abuela's home cooked beans... I mean, if in heaven they serve food it would not even get close to them delicious Abuela beans.  So some good family time and then August 10th we move into our new home.

Some people may ask why not move back to your existing home.  Unfortunately, the existing home would need some serious renovations to allow Miabelle to come home.  The time and effort as well as the money are somethings we do not want to invest in anymore because we do not have the energy nor the desire to inject more capital in an already underwater ship.  In addition, after this experience there is not a hair on my head that finds a 1.5 hour commute daily, at best, acceptable and worth it.  We got some great toddlers at home and they deserve to see their father more than once a week, during the weekend, or me rushing home to see them just before bed time at 8pm.  Commuting is overrated!   So the house stays rented to amazing tenants and we will live finally in a town we always wanted to live in, close to work.

for those who we might see, we do have to warn you, we are not the same people: V has more grey hair and I have about 30 pounds of mushy "muscles" more.  We are also a little more anti-social and have little to talk about other than our experience as life has been limited mainly to the walls of our cocoon for most of the past 1.5 year.  We are very paranoid (that would be me) and beg you to stay away when you feel ill, have a cold or your kids are not immunized.  Yes, I am serious.  We do clean a lot, even in public, it has become a second nature.  Living in a cocoon has had its positives (many of them) but also some minor physical and mental impacts that may come over to the normal human being as a little awkward.  Although we are coming back we will remain very cautious with Miabelle in the first year until her immunizations are 100% done and unfortunately until then socializing will be mainly limited to the summer and early fall. We thank you in advance for your understanding and cannot wait to see you all again!!

So the cookie is out of the jar: We are coming home!! Hope you are excited cause we are.

PS:  I cannot stress enough to our friends and family that Greece is cheap and very nice this time of year!!!!
PPS: Beans please Abuela... beans please!

Sleepy sleep,

Liver remains a concern

Today was hospital day for Miabelle: her monthly checkup.  V stayed home and enjoyed some alone time with Noelie, while Miabelle and papa went to visit them awesome doctors and nurses at CCH.  Noelie got to use her indoors bicycle without having to fight for it and she got mama's full attention for a good 2 hours.  She was in heaven, mama all to herself.  Miabelle's visit was quick; it took literally 1.5 hours and she was the usual trooper when they put the needle in her arm for the IV.  She looked at it, put her thumb in her mouth and continued watching Mickey Mouse Clubhouse.  What a strong toddler!  

Once home Noelie thought that we went to the park without her and when I explained that we went to the hospital to visit doctors and nurses she answered "Me to papa, me to papa!".  Let's hope not.

This afternoon we got the results and honestly we were hoping for a perfect score and got good numbers on all counts except the liver enzymes.  Miabelle's liver enzymes went back up to twice the maximum recommendable level.  As you may have read months ago on this blog, high enzymes are normal post transplant as the body processes and breaks down the many medications and chemicals the BMT kids are exposed to.  Eventually these enzymes drop back to normal levels within 6 months, with a few kids longer like with Miabelle and with some it can lead to organ failure.  She had been for months on Actigall, which is a medication that helps clean the liver and keep enzymes low, before we stopped Actigall last month.  We truly had high hopes that the liver was now normal and not anymore under pressure but it is clear that her liver remains under a lot of pressure.

As a result, her file will continue to state that she is at risk for liver failure, not a very comfortable feeling.  They will probably recommend putting her back on Actigall for a few months and retest again in 2 to 3 months.  If it persists a liver specialist will be consulted to see what the next steps are.

We are looking forward to the day we can stop worrying but this may take awhile longer.  In the meanwhile we remain hopeful.  

Sleepy sleep,

Oh!! No!! A whale!!

Today was the first day at the pool for Miabelle.  Noelie had experienced lakes and pools before with los abuelos but Miabelle had only seen a pool last in PR in 2011 so you can imagine her curiosity as well as anxiety to see so much WaWa (water as per G-girls).

They did really well and enjoyed vegging in and around the pool for a good 2 hours.  Miabelle was confident and didn't even cry once.  Noelie was such a fish in water that when we left we had to deal with some crying.  If it was up to them we would still be sitting there.

It was a lot of fun!!!! As the pics below show it.

 Let's go Beebell Lets go!!

 I can do this!

 First try out with papa... I am cool, no worries!

 Ok! This is seriously too small for me.

Fun!!! 

Noelie is swimming!! 

Too cute!!

The anxiety for both V and I was relatively controlled.  Pools are known for the many fungus that live in and around it and fungus infections are one of the main ones to avoid before and just after transplant.  Miabelle, like every BMT patient, got for months medication to avoid fungal infections.  We felt relatively comfortable to try an outing to the pool.  I think V and I were more uncomfortable being among 20 year old in-shape college students, who represent a large part of the community's population.  We were also lucky that there was no sign that beached whales were not allowed in the pool.  And just to prove our point, during our playing with the girls papa swam towards the girls in an attempt to scare them and, in unison, on the top of their lungs they screamed "Oh!! No!! Whale!! Whale!!".  I mean, seriously?!! The truth hurts...shark girls!! papa is a shark...big white shark!!!  Another few years more in therapy, thank you G-girls guess you will be getting a tricycle for your sweet 16 after all.

We know that to many, who read this blog, this seems to be the normal life but what may seem for many normal seems these days to us (and many BMT parents) like a spectacular experience.  Long live the pool!!!!

It was so much fun we will go again next week.  

Sleepy sleep

Home of the Great Samaritan

"The Angels are nearer than you think" 

Source: Billy Graham.

In what world (besides hospitals and churches) do complete strangers come to the rescue of a battered family.  In what world do complete strangers cook, deliver food and toys, sanitize apartments, make donations to causes not common to their own, organize Christmas events like the 12 nights of Christmas, babysit so the parents can keep their sanity, teach unknown toddlers, be a therapist, sleep with one eye open to make certain we are fine and become friends without ever meeting .  And this, just as an important detail, for close to a year and a half.  If we had not asked to stop they would have continued to infinity and beyond.  Well, we can say with certainty that the city of Cincinnati has plenty of such people.  Cincinnati is the home of the Great Samaritan., which we have called the Cincin Angels.

March 2011 we landed in Cincinnati, a city completely unknown to us, with only one goal "doing whatever it would take to save our little baby" - just like every parent would.  Within a week, we left our family, friends, clients and everything we knew behind in the pursuit of life in the unknown.  We had no idea what our new destination looked like nor what kind of crazy martians we would encounter - who knew.  I had been once before for business (itinerary: airport-office-airport) then again briefly before our move to check out Cincinnati Children's but, like many parents in the BMT department of CCH, we landed in land foreign to us (no offence as it is still the good old USA).  In case you were wondering, we are glad to report that Ohio is populated not with crazy martians but with the true-value-to-the-core American, namely the Great Samaritan.  Indeed, we did not spot any green people.  If there were any Aliens they were within our family considering papa is a resident Alien; the ET-phone-home kind a guy from Belgium and the "youz-godda-problem?" kind a gall from NY had landed.  So the crazy martian is on us, not the way around.

To be correct, V landed with Miabelle first.  They planted a flag at Cincinnati Children's and the Ronald McDonald House before Abuelo and I landed with the moving truck.  We had a new apartment and the only route that was known to us, and was going to be known by us for many months, was hospital-apartment-hospital.  To add insult to injury, time became crucial and a rare commodity that no money could buy.  Every second we had we spent with Miabelle in fear that it would be the last one.  Like a pinball we bounced back and forth with no time to think or rest.  In addition, we lived in quarantine (aka the cocoon) to limit any potential infections to Miabelle or ourselves.  So the basic necessities of family life took a back drop: no time for cooking, no time for groceries, no time for a stroll around the block or the park, no social activities, no movie, no night out, no stroll to the mall and forget about making friends.  Life limited itself to our cocoon, the hospital, our girls and papa's work...ooh! and the blog.... meee looove the blog!

This is where these Cincin Angels came to the rescue by delivering to us the unthinkable.  They delivered to us life as you know it.  Under the lead of Angel Patty, herself a cancer survivor, and Ashley, another hardcore altruist, the Cincin Angels organized their troops.  More than 30 people gathered to make us feel at home in this new city of ours.  They started by cooking home meals and delivering them to us weekly.  They helped sanitizing our new apartment. Then it became more than just meals, but also grocery supplies, gift cards, sanitizing wipes and toys. As time went on they donated funds to the G-cause and babysat the girls so we could have a night out.  Because they knew we were in lock down away from our families during the holiday season, they organized the Twelve Nights of Christmas delivering more gifts than our girls will ever see again (cannot spoil them every year).   It not only softened the mental blow of being away from home, more importantly it contributed to one of the most beautiful Christmases we had ever celebrated.

The Angels were there for us in good and bad times, like Swiss clock work they delivered to their promises every week without skipping a single one.  I remember that their visits made the girls and us feel like kids  awaiting the arrival of Sinterklaas or Santa.  All excited like little kids we waited by the door, the door bell rang, we heard the beautiful announcement "Hello delivery" and then the much welcomed chat at the front door (yes we did not allow anybody in the cocoon, not even the Cincin Angels).  Besides making friends, it was like free therapy!  They gave us that one single social interaction we so hungered for weekly, because besides their visit and the smurfs, which I still see on the window sill, there was not much to any social interaction for us.  It was such a relief to know that out there life was still as we knew it.  Sometimes we were down, and probably not as welcoming as we should have been, and some times we were like kids on a sugar-trip, but whatever monster or hyper-kid opened the door they were always kind, patient, caring and most importantly encouraging making us feel that we were winning this war.  There visits were so much fun!

Also, as you can imagine, this healthcare experience has its costs.  Most people don't know but a Bone Marrow Transplant has a average price tag of $2 million.  Nothing to sneeze at: from medications that cost over $600 per infusion to quarantined hospital rooms of which the price tag alone will make you faint.  The price tag for life is considerable, obviously more than worth every penny and than some.  Even if you have excellent insurance, the insurance company will only cover what they deem necessary, everything else good luck to you.  It is with help of great Samaritans like the Cincin Angels that the financial blow was considerably lower than could be expected.  I cannot imagine how heavy such a financial burden is for people with no support, and regretfully there are way too many in the BMT department.

People who have not lived through this hell may have a hard time understanding the importance of the Cincin Angels.  We as well as many parents who have lived through this experience will recognize that when your life is upside down making your time priceless and "hope" a far away dream creating a welcoming, warm and comfortable home is the key in keeping your sanity and is the source of energy which will allow you to fight another day.  This is exactly what the Cincin Angels did for us.  They created for us our warm and comfortable home away from home.  They became the friends and family we missed so dearly.  Their contribution to the well-being of Miabelle and our family cannot be measured nor can we ever thank them enough.  They have become part of our family in a city we have now called home for over 1 year.

Although we would have truly enjoyed their further support, there comes a moment were life has to return to normal, the time has come for our family to try to stand on our own two feet again, with less help.  This is why V and I thought it appropriate after receiving their help for close to 1.5 years to ask the Angels to halt any further support.  We need to see if we can still live after this experience and after being pampered by them Cincin Angels for so long.  Now that Miabelle is stable, V is running again at all cylinders, I have regained some sanity (never had any to begin with) and the girls are independent ladies, life should be less overwhelming... we hope.  Life will never be the same after this blow, however we hunger for normalcy to return, which means that we also have to give up them awesome luxuries so kindly receive from the Cincin Angels (Note: playing "Please don't go" song in the background - tears are running down my fat puffy rosy cheeks and V is elbowing me saying "Be a man will ya!")  But like Patty and many of the other Cincin Angels said "if you need us, we won't be far".

What blows our mind is that none of them knew us and still today many of them don't.  All they knew was our blog and the roller-coaster we lived day-in day-out.  We are hopeful to one day meet them all and have especially Miabelle meet them all.  When we told Patty "Patty we cannot accept all of the Angels' help because we will never be able to repay you for it",  she answered by saying that, first, it is not about repaying but about helping and, second, we had no choice because they wanted to help.  And when we insisted that truly their kindness was god sent but that we had the inner feeling that we needed to show gratitude, she answered "Don't worry.  If you feel the need to do anything than just pay it forward when the time comes".... and so we will!!

Thank you so very much for making this journey so much easier and for your amazing contributions in saving Miabelle.  It goes without saying that we could not have done it without you Cincin Angels!  We are and will remain eternally grateful to all of you.

"In the darkest of nights an angel will appear 

to show you the path to the brightest of lights".

Source: Unknown

PS:  Before we go we wanted to wish the mothers of sick children, the mothers who have lost a child, the Cincin Angle mothers, Abuela, Mamie Bo, this Mama here locked up with crazy papa and all our mamas out there a Happy Mother's Day.  May it be filled with mucho joy.  Thank you for everything cause what would we all be without you!!!!!!!!!!!

PPS: Also a thank you to Cincin Angels Courtney for the delicious cupcakes (obviously we did not share with the girls) and Cincin Angel Kim for giving forgetful papa an Arts and Crafts project for Mama's Mother's Day; it was a success and she loved it.  Kim I regretfully have to say that the girls used the permanent markers on themselves and me, and now we have a blue Noelie, a purple Miabelle and a green "crazy martian" papa cause the permanent markers unfortunately never made it onto the Art project... or barely. Coloring hands, arms and faces is WAY MORE FUN!!!  We had a blast, hopefully I have no client meetings any time soon.

PPPS: I know it is not "Cincin" but "Cincy".  I have the excuse of being foreign and plan to use it to the full extend of its disadvantage.  Although V calls them the Cincy Angels and has corrected me MANY times, I remain eternally and happily stubborn as logic dictates it to be "Cincin" not "Cincy".  Hellooooo!! Am I the only one noticing the "Cincin" in "Cincinnati", I no see no "Cincy" in "Cincinnati", maybe a "Cinci" at best.  I rest my case!

Sleepy sleep,

When a hero comes along

A hero is defined as a person who is admired for their courage or noble qualities.  People who have qualities that reach above what is considered normal and who often will do anything to save a life, even put themselves in harms way.  Often such heroes come in some kind of suit whether they are soldiers, police officers, doctors, nurses or firemen.  However, sometimes such heroes are regular people just like you and me.  Regular people who realize that they can save a life by becoming a donor.  When a hero comes along ...

Last year at this time, V, I and many supporters were desperately trying to find a donor for our little giggly girl.    Miabelle had no chance to live without a bone marrow transplant and for a transplant we needed a donor.  Without a donor she had limited time left as her FLH was very aggressive and had reached her central nervous system.  Many nights at home and in the hospital I lied awake writing and responding to emails til 3-4am trying to create awareness and gather donors.   Whatever it took, because it was a battle we were not willing to lose.  Friends, family, V and I banged the drums so hard that it felt as if our hands were going numb.  Very quickly The Icla Da Silva Foundation in the USA, the Belgian TV Channel VTM, the Belgian Red Cross and many people that we never met joined us in an effort to find that solitary chance, the hero we needed to save Miabelle.  The world mobilized quickly realizing that time was of the essence and that an injustice of nature was serving a death sentence without trial.

I remember those sleepless nights staring at the ceiling with a million thoughts rushing through my mind: how can we find a donor, what else can we do, why are we so helpless, but more importantly, what if we cannot find one, how long would she have left, how much more would she suffer. All we needed was 1 donor, nothing more... just 1 donor to save our little daughter.  Was it too much to ask for?  Initially days went by and no donor was found, our optimism stayed strong because even with the seemingly insurmountable statistic of 1 in a million we were convinced that Miabelle would find her match.  In the end the optimist conquers all, doesn't he?  But weeks went by, thousands of new donors had registered and still no donor was found, our optimism remained strong but doubt began to surface.  Like termites eating wood these doubts were devouring our confidence with the passing of time.  Eventually months went by, even more donors registered yet still no donor was found, our optimism started to fail at an ever faster pace as time passed.  Eventually despair set in, of the millions of donors worldwide none were a match to our baby.  We all knew what that meant, no donor meant no chance.  Our daughter would suffer the same end as so many other fallen angels who could not find a donor.  Mr. Death would win the war without even giving her a single chance to fight, and without giving us, as parents, the chance to protect her.

Miabelle's ability to fight was fading fast.  Hours began to feel like days, days like weeks and months like years.  Every night became a sleepless night, despair and exhaustion became our everyday life, and every time the match coordinator (person who looks for a matching donor) came to visit us it felt like we were being pushed closer and closer to the edge, off which we were sure to plunge at any moment.  The clock was ticking so loud in our heads and no matter how loud we demanded "mirror, mirror on the wall where is the best matching donor of them all?", the silence was deafening.

One day when Miabelle and Noelie were playing during the morning hours, Miabelle suddenly sat down, put her thumb in her mouth and closed her eyes.  She expressed so clearly by her actions that her time had come.  Exhaustion had set in.  She had fought hard for 6 months but now she was showing us that her defenses had been breached, and defeat was imminent.  V intepreted Miabelle's signs very well, and the next day we went to the hospital to discuss with Dr. F. what our options were.  Dr. F. took our concerns seriously and put additional pressure on the match coordinator to find a donor.

Weeks went by and eventually we received the news that after 5 long months of searching, a donor had been found.  Although we knew that we had many more potentially fatal battles ahead, the news was nothing short of miraculous.  We couldn't believe it when they told us.  If only someone could have taken a picture of our faces, full of disbelief.  At first we were numb staring blankly back, then our faces changed to an expression of "What did you just say?", then to "You're kidding right?", to "Really?!", "Are you sure?!"  It was such a relief for both of us that we could not hold back the tears. Our girl was given a chance to fight this war, she was given the gift of life.  And although the transplant was from a umbilical cord donor and not an adult donor, someone out there was our hero.  Parents of a newly born child had the wisdom, courage, strength and altruism to donate their baby's stem cells to research, giving our child a chance to live.

Yesterday on Facebook Vanessa's cousin Lisa announced that one of her friends was contacted by the Be The Match Foundation (USA Donor Registry).  Her friend, also named Lisa, was a 100% match to a patient who was lined up for a transplant.  V and I were so ecstatic hearing this information.  Not only was she a match but a 100% match, that is such a rare occurrence.  If Miabelle had a chance of 1 in a million in finding a donor than finding a 100% match is estimated at about 1 in 25 million.  Call it a miracle.  A 100% match not only is rare but, in addition, it will considerably increase the chances of survival of the patient.

We always said that even if all our efforts would not save our daughter, those efforts would not be in vain because they would save someone else's baby eventually.   You can barely imagine what it feels like when in the middle of complete despair a hero comes along.  And although it may seem to many only a chance, these patients only need that exact 1 chance because without it they are dead men walking.  Lisa is our hero and will be the hero of that patient and his/her family not just for a day but for life.  What greater courage or noble quality exists than the gift of life!

We are so very grateful to all those people out there who registered to become a donor, thank you in name of all those out there searching desperately for their matching donor!!!

When a hero comes along...

Sleepy sleep,
Them Gilliers eternally grateful

Day 304: Labs, Los Abuelos, Chi Town & More...

Hello everyone!  Sorry for the long delay in updating the blog.  Life has been very busy, in all the best possible ways.  Olivier is currently in Europe on business so I have been assigned the daunting task of writing the blog (to which I admit, I have been avoiding), but before all of the good news gets jumbled together I thought it best to put finger to keyboard.

Miabelle went in last Wednesday for lab work, and ALL of her labs came back great.  She again amazed me at how well she handled the IV stick, cried for all of 5 seconds and smiled when it was over.  Truly a brave warrior princess.  Her liver enzymes were slightly elevated, but not enough to warrant putting her back on Actigal, which means that she is officially off all her meds!!!  She can start immunizations on her 1 year post BMT anniversary, July 3rd.  Can't even believe it's been 10 months already. 

Last Tuesday, Los Abuelos (the PR grandparents) arrived.  I have to admit, we were worried about how Miabelle would react.  She was only 17 months old when she last saw them, and with all that she's been through since we expected that she would be standoffish and possibly even afraid when she saw them.  Boy were we wrong!  She ran to them and hugged and kissed them as if they'd never left.  It was heartwarming, and yet eye opening to think that after not seeing them for nearly 1/3 of her life, she remembered them and was overjoyed to see them.  Not sure who it meant more to, Miabelle or Los Abuelos.  Either way, it was a moment I know my parents will never forget, and apparently, neither will she.  In typical Noelie fashion, she ran down the hall towards the front door yelling "Hi guys!" the minute the door opened and played tour guide of the apartment showing off all her favorite toys, dolls and hats while chatting up a storm along the way.  She too hasn't seen my parents since October, but she at least had 3 months with them in PA before returning home to us in Cincinnati.  Needless to say, the girls have both been ecstatic to have Abuelo and Abuela here, and so am I (not sure my Dad feels the same, as I managed to hit his car while pulling out of the parking space 24 hours after they arrived - in my defense, there hasn't been a car in the spot next to us in 9 months, so it could have happened to anyone - sorry Dad ;p)

ABUELA!!!

HI ABUELO!!!

Choo Choo Time with Abuelo

Giggle Time with Abuela

BI-CY-CLES!!!!!! (A Christmas 2010 gift from Los Abuelos that the girls finally got to enjoy)

 As Oli had to travel to Europe to meet with his clients (many of whom he hasn't seen in over a year), and my parents were insisting that we get away for a few days and have some time away from the confines of our cocoon, Oli arranged to meet with some clients in Chicago before leaving to Europe, and I tagged along.  We had an incredible time.  We got to sleep in, hit the spa, drink our faces and eat our butts off, laugh to the point of crying at a comedy show, walk along the lakeshore, shop along magnificent mile, visit the museum, planetarium, aquarium and pier, stand 103 stories above ground, and best of all, enjoy eachothers company.  It was the best trip I think we've ever had, and we've taken some pretty awesome trips.  I can't thank my parents enough for encouraging us to go, and for holding down the fort while we were gone.

Cruisin' at the Mall



Since my return to Cincinnati, Los Abuelos, the girls and I have been enjoying our time around town visiting the zoo, aquarium, UC campus, mall, even dining out at A Taste of Belgium and the girls new favorite Tom+Chee.  What's surprised me most is how well Miabelle has transitioned.  Just a few short weeks ago she was like a deer caught in the headlights when out in public.  Now she's a little social butterfly!  She's taken Noelie's lead and says "Hi" to everyone passing, no longer shying away from other kids.  In fact, she practically stalked a little girl at the mall the other day.  Walked right up to her and began chatting like they were old friends, and even after we'd finally gotten her to say goodbye and went to the upper level to exit, she cried out "Hi Baby" when she spotted her again down below and began tapping on the glass and waving.  Too funny.  And Noelie continues to amaze me with her comprehension and language development.  She is so smart, I know all parents say that about their kids, but honestly, she knows words that even her Papa doesn't know!  She has been learning a lot in the time that we've been so focused on her sister, I can't help but feel guilty for not giving her more.  I look forward to closing the chapter on this crazy ordeal and returning to being a full-time mother, as opposed to having to split my time between mom and home health nurse.

Choo Choo Zoo Time!

My parents leave on Sunday and Oli returns on Monday, so I'm in for it during the interim.  Not even sure how my parents are going to get out of here as the girls are so attached to and dependant on them now.  Can't wait.  Should be fun!  Wish me luck.....

Night night,
Mama (aka Up a Creek)

Day 286: A Taste of the Cincy Zoo and Belgium

It has been a busy but fun week.  Miabelle continuous to do well, and although we have done several outings no infections have yet presented themselves (for now), and Noelie has renamed herself "tataaaa! Super Noelie!", which she is indeed.  Today was an excellent day, another day towards normalcy.  Cincinnati gave us a warm-sunny day and Mama's lobbying group (aka Fight for Freedom) managed to persuade Papa's political strong hold (aka Cocoon for Life) to go to the zoo of Cincinnati, known as one of the more beautiful zoos in the country.

Before we go any further and in case you hope for pictures, we do regret to inform you that the geniuses of the G Family forgot to recharge the camera and thus below is the only picture we were able to take before the camera said "Me no juice, me on strike":

No! This is not papa!  Could be family though.

Now that you have shared our disappointment of the "No pictures for you!", we can continue.  

The day was a lot of fun.  We walked the entire zoo, from Mama's cousins "El Monkeys" to Papa's cousins "De Olifanten" (Elephants).  Miabelle loved to see all those animals, giggly girl giggled her way through the entire experience, while Noelie (who had been to the Zoo in The Bronx and Antwerp) enjoyed running around like a toddler-gone-wild.  We took there princess wagon with us and... my oh my... at least 10 people asked us where we bought it: toddlers and wagon were a hit.  Miabelle's favorite animals were the flamingos and the giraffes with the loooong neck.  Noelie's favorite were the monkeys and she kept singing "no more monkeys jumping on the bed-no more mamas jumping on the bed- no more papas jumping on the bed-that is what the doctor said!"  Both V and I fully agree with the rating of the zoo: beautiful!  It is a clean and well maintained zoo with great decors and lots of greenery.  Obviously, in case you were wondering, they had animals to. 

In the afternoon, Cincin Angels Rick and Libby joined in and we went to a Belgian restaurant called "A Taste of Belgium".  They must have thought "poor Belgian-must be home sick" and right they were.  This is the first time in a long, very long, time that we as a family have done a brunch or any other social event as a family, and who better to share it with than two awesome and always supportive Cincin Angels.  Needless to say the girls had some Belgian Fries* (which they devoured), while Libby and Papa had a Maes Pils (rare Belgian beer in the US).  Let the record show that we sanitized the table, kid chairs and pretty much anything the girls touched, but we refrained from sanitizing any of the guests of the restaurant including Rick and Libby, as that may have been a little inappropriate.  Going to the restaurant remains a stressful experience because tables usually get cleaned with dirty rags and menus rarely get cleaned at all and are besides toilet bowls and cell phones among the biggest carriers of germs.  So next time you get a menu make certain to wash your hands after ordering food not before (at least for those people who still wash their hands before eating).  As you can imagine we warned Rick and Libby that the girls had not been to a restaurant in awhile and thus that we did not know what to expect, to which they responded not to worry.  They have only been to a restaurant twice since we opened up to semi-isolation and they seem to adjust well.  Miabelle tends to remain quiet as she has only been to a restaurant a handful of times in her life and thus needs time to absorb and feel comfortable, whereas Noelie has been more often before she joined us in isolation and thus adapts quicker.  Both Rick, Libby and us were amazed as to how well-behaved the girls were during the brunch.  It was so much fun to do brunch with friends and we bombarded Rick and Libby with thousands of stories and questions like: does NY still exist, do birds still fly, is the earth still round, has Newt Gingrich colonized the moon yet, etc.  Our hunger to socialize and true joy of normalcy must have been clearly visible to them.  For everybody a brunch with friends is fun but for us it was spectacular.  It is hard to describe so all we can suggest is lock yourself up for 300+ days and then have brunch ;) .  We enjoyed every minute of being normal and with friends for a few hours.  We all loved the great company and the delicious food.  Thanks Rick and Libby for your company.

 I am incognito at A Taste of Belgium

Wazup Libby! mmm... I like your phone

Cincin Angel Ashley (aka Ash) also experienced this week a moment of joy.  Ash has been one of the diligent cooking and delivery angels for over a year now.  Wow! It has been more than a year that the Cincin Angels have shown their much appreciated support.  She more than anybody else has seen our ups and downs during this experience.  Every time she rang our doorbell she did not know what kind of moody dwarf would open the door: sleepy, sneezy (never), dopey, doc-y, happy, bashful or grumpy ... you name it, she has seen it.  She may not have studied psychology but she did an excellent job in being a psychologist.  She managed them dwarfs as if she did it for a living.. mmm... maybe she is Cincin's Snow White.  But this week we surprised Ash with letting Super Noelierunning in the corridors of the building (obviously papa ran behind them with wipes) and their first close encounter with a non-isolated human being.  They actually got to hug her.  Yes they got to hug a non-cocooned person, something we have not allowed Miabelle to do for over year and she loved it.  She grabbed Ash's leg and held on to it as if she was saying "thank you Aunty Ash": true love.  The next plan is to go out with Ash to a park and maybe have some cupcakes....mmmm lekker niamy niam!

Miabelle is getting more and more comfortable with the thought that there are more people in the world than doctors, nurses, Cincin Angles, grannies, Noelie and us.  She is also conquering her fear of nature: grass, trees, birds and all the other beautiful things she has very rarely seen so far in her short life.  It is not like a new born who sees things for the first time and absorbs, this is a toddler who can already comprehend and thus ask questions about her new surroundings.  Her environment was a hospital room and an apartment, now it is the world all at once.  At first she becomes very quiet because she goes in overdrive from the new experiences, but as things settle and she comprehends her new environment she enjoys it.  V has been battling hard for us to open up the cocoon (aka Fight for Freedom), she has been leading the pack at this stage of the experience.  Whereas I remain very defensive, if it was up to me we would remain in isolation for many more months (aka Coccon for Life).  I never thought that V would have been so quick to adjust (applause for V), nor that I would actually have such a difficulty reintegrating (booo for me).  But I will save you the drama for another blog.  The point being I am impressed with V taking the lead, which deserves a blog by itself!

*Note of the writer: Belgian Fries: People who know me know not to ever say "French Fries-I did not know they were French" in my face.    Just for the record Fries are Belgian not French, and my dearest French friends will testify to that fact.  It is not that I don't like the French, au contraire (on the contrary), but fries are one of the culinary prides of my country and thus the world should know. The reason why the Americans call it French Fries is because the verb "to french" means "to cut in thin lengthwise strips before cooking"; just like fries.  So French Fries has nothing to do with the French but implies thinly lengthwise cut and fried.  So bloggers, when you order fries make the world a smarter place by informing fries' lovers that it's Belgian Frenched Fries... and don't get me going on the Freedom Fries!  (PS: V will kill me for this paragraph because she is soooo tired of my Fries' story and my ambition to spread the word about the Belgian Frenched Fries).  I do not blame people for not knowing this, hell even Microsoft spell check marks "to french" as an unknown verb.

Sleepy sleep,

Me tired from dragging two toddlers and a princess wagon up and down the hill at the zoo.

Donating Miabelle's frozen stem cells to research.

When Miabelle and Noelie were born we decided to have their cord blood and placenta stem cells frozen.  We thought that maybe, in case they got severely ill, they could use it and it could save their life.    Little did we know but those cells cannot be used when the illness is genetic and thus part of the DNA composition of your blood.  I remember that V said to the doctors "Donor? Oh no, we were smart enough to have their cord and placenta frozen at birth, so we have many stem cells", and the doctor replied "I am sorry but her cells cannot be used because it is FLH, the genetic form of HLH.  Her cells are the carriers of the disease".  Bye bye smart decision; hasta la vista good investments; hallo wake up to reality.

We saw freezing their cells as an investment in their future and a protection against the horrible realities of nature.  At that time we just thought "hell why not freeze the cells just in case", never did we think that our girls could or would ever get ill, certainly not within 1 year of birth and definitely not with a genetic disease.  Just like any father or mother our concerns were: what if they grow up (papa no like), what if they don't want to go to college (mama and papa no like), come home with a boy on a motor cycle (papa no like),  get kicked out of college (papa and mama no like), what if they want to work in finance (mama no like; papa like) or something else rather unpleasant.  Never did we imagine that the horrible realities of nature could be so cruel.  At the time we had the luxury of being willfully blind.  We lived in a world were bad things only happen to others.  Yet, even if bad things would happen to the girls, we were prepared with frozen stem cells.  We were badly prepared because of our inability at the time to even imagine some of the worst things life has to offer: death or BMT.  Now I will still  worry about the boy on the motorcycle and V will still worry about the girls not going to college, but we will also worry about many other things most parents have the luxury to ignore and hopefully never have to wake up to.  The state of willful blindness was divine yet short lived.

It's a strange feeling because you feel as if you were cheated out of a smart and good decision.  Miabelle's cells will go "bye bye you are useless going forward".  As part of a BMT you receive donor cells which are as close of a match as possible to your own stem cells (or bone marrow), however the old cells are genetically tinted with the HLH disease and therefore are of no use to Miabelle or any other child for that matter.  Our backup plan for little Miabelle failed.  The backup plan for Noelie is still in place as she does not have a gene malfunction like Miabelle, I guess 50% of our decision may work out but hopefully never needs to.  We needed 1 chance to save her and after months searching 1 single donor was found but we have no backup plan anymore, like many BMT children.

I always wonder about what the odds are that a Belgian immigrant from across the pond meets a Puerto Rican lady in NY and both have the gene that, when combined, creates FLH.  What are the odds, smaller than winning a 500 million Mega Million jack pot, less than 1 in 170 million or so.  Imagine that!!  (just for the record we did not win the jackpot.  Life is sooo smurfing unfair!)

Long frustrating story short, today V and I decided to donate Miabelle's stem cells to the HLH/FLH research center of the Cincinnati Children's Hospital Medical Center.  The investment may not protect our little peanut as we had hoped for but, at least instead of discarding them, we will donate them to research for HLH/FLH in the hope that it will help the battle against this horrible reality of nature.  This is a small gesture that could make a big difference, we hope.  Remember that all we are striving for is that the odds shift, even if it were slightly, in favor of the many HLH kids to follow.  One step of many to follow of our dedication and strive to find a cure so no child dies misdiagnosed and no child suffers another BMT.  These children deserve better from nature and we as parents owe it to them.

The cells will be delivered next week and may the gods of research (aka researchers) do their magic!

PS:  Before I get off my soap box and if anybody is listening, bring on that boyfriend!  I am the father of a BMT warrior, I can handle the Every-girl-loves-the-tough-guy-who-skipped-high school-and-college-with-a-body-covered-in-tatoes-and-piercings-wanting-to-make-my-daughter-his cleaning-and-cooking-muse-while-he-sits-on-her-couch-with-a-beer-scratching-his-hairy-belly-and-may-never-work-cause-he-is-a-lazy-bad-boy.  Oops! I just spread the word about my deepest fears of what they may come home with.

PPS: To future boyfriend: mama doesn't mind tatoes or piercings as she finds them a form of expression; papa's shi-shi views of the world are archaic according to mama.  However skipping school and making her daughters a cleaning muse... you have no idea what this emancipated Latina mama will do to you.  It will pale in comparison to what papa would do to you... trust me.

The luxury of willful blindness is out the door!

Sleepy sleep,

Happy Easter..............

I arrived back in Cincinnati on Wednesday afternoon, after a wonderful trip back home.  The plan was that I would stay at a hotel until Saturday morning just as a precaution to make sure that I hadn't caught anything while traveling.  But after only a few minutes in the hotel I called Oli to ask if I could come home sooner.  I missed him and the girls too much to be away any longer.  But before I could even say hello, he began sobbing and practically begged me to come home!  Thankfully, I felt fine, but as an extra precaution I suggested that I wear a mask until Saturday morning.  Normally Oli would have insisted that I stay at the hotel as we'd agreed, but after spending 5 days alone with the girls, he was desparate.  We agreed that I would stay the night at the hotel and come home the following morning.

So after six long days, I returned to find our home relatively intact and papa and the girls all in one piece.  It was a very happy day for mama.  Walking into their room on Thursday morning was probably one of the most rewarding moments of my life.  Hearing them shout "Mama!!!" and rushing over to hug and kiss me, was better than any $600 million jackpot (although that would have been nice too).  Oli and the girls had decorated the entire house for Easter with eggs, decals, butterfly and bunny artwork - it looked amazing!  Great job guys - especially papa for doing all of that in addition to juggling work and the girls for a week.  It must have been exhausting.  I can only imagine how long the days must have felt, and how short the nights.  I know that for me, 6 days felt like an eternity.  Apart from 2 brief hotel banishing's and traveling to pick up Noelie in PA, I've not been away from Miabelle in over 16 months.  To my surprise she looked huge!  I measured the girls this morning, and in fact she's grown 2 1/2 inches since January, while Noelie has added only 1/2 inch.  She's beginning to catch up in size now that she's off her meds and eating like a champ!  Go BeBelle Go!!


Now to the M.O.M.I.E. Fundraiser for Miabelle last Saturday.  It was a truly spectacular event.  No detail was overlooked.  Everything from the venue, to the flowers, to the custom-made Mission Miabelle shirts, to the butterfly theme, it truly was more than I ever could have imagined.  These M.O.M.I.E.s went above and beyond securing raffle prizes for any and every kind of enthusiast: coffee and tea; sweets and treats; dog lovers; equestrians; new moms; old moms; B&B accommodations; excersize; pampering; jewelry; financial services; family, theatre and sporting events; even art collectors!  

Some of the raffle prizes!

The food was delicious and the turnout was tremendous.  The opening trailer to the Histio Warriors film was beautiful and heart breaking.  And the presentations by the Presidents of the Histiocystosis Association, Jeffrey Toughill; and the Icla da Silva Foundation, Airam da Silva were inspiring.

Jeffrey Toughill

Airam da Silva

I have to admit that I was incredibly nervous about having to speak in front of an audience, particularly after spending the last year in isolation with virtually no contact with the outside world, I feared that I would freeze up or pass out.  And to be honest, I have no idea what I actually said, I can only hope it was understandable.  The event ended with an absolutely beautiful video that Oli and the girls put together as a thank you to me for putting up with them for the last year and for being such an awesome mom (okay, so I may have exaggerated the video content but you get the idea).  There wasn't a dry eye in the room.  A sincere and heartfelt thanks to all of my fellow Momies for all their hard work and sacrifice.  It truly was a day that I will never forget.

Look!  I have a face under my mask.  Who knew?

I admit I was a little self conscious about being the only one in a room full of people wearing a mask.  I mentioned it to my therapist and said that I feared I would feel like I was wearing a scarlet letter.  He replied that instead of thinking of it like that, I should think of it more as a badge of courage.  To which I replied, "I wish!"  Thankfully, he prescribed an anti-anxiety medication, unfortunately, I forgot to pack it!  But the truth is, I didn't need it.  After a few minutes, I didn't feel self conscious.  Instead I felt at ease, and loved, and welcomed.  It wasn't easy being around family and friends and not be able to have a proper reunion embrace, but everyone understood.  It was the first time that I've been in public when I didn't feel like a leper that people either feared or ran from.  Thank you all for making me feel so comfortable and for polishing my badge of courage for me.  You'll never know how much it meant to me.

A special shout out to Jo and Keri for taking on this enormous task with humor, grace and love.  Can't wait to get back home for our long overdue Play Date!!!!  LOL, V

With an iron...

With an iron teddy bear did papa rule the house until queen mama came back.  Yes the iron fist was out the door within 24 hours, begging didn't work, bribing was attempted with future promises of toys, late curfews when they are 14, a BMW when they are 16, a first boyfriend when they are 35 instead of 50, and a trip to see Mickey Mouse when they are 30.  Nothing worked, they are as stubborn as ..."careful! the couch is uncomfortable" says little voice in my head... as me.  Because they are as stubborn as me I could not fault them for that marvelous, magnificent and extraordinary skill.

The girls and papa had an awesome week of playing, arts and crafts, story time, Tinkerbell... Tinkerbell and much more Tinkerbell... oh! hey! ever heard of Tinkerbell. It was a fun yet busy week.  We started the day with getting dressed, some times like a princess with beautiful dresses (not papa of course; although Noelie says "Princess Papa") and some times like a miss-matched-papa-dressed-us-what's-wrong-with-this-man toddlers.  Then we had some delicious breakfast to finally start the day with activities.  Every day we started Easter theme arts and crafts.  From making bunny faces, to coloring a bunny, to coloring eggs, putting Easter stickers on the windows, making Easter butterflies and decorating a mega Easter Egg.  Here are some pics of Easter arts and crafts.  Obviously papa helped a little... but only a little, artist Miabelle and Noelie are very capable artists:

 Stick Halloween to the Easter Butterfly = Fun

More sticking with more Butterflies

The new Easter bunny a la mode.

ooooh Mega Paas Ei!! (Easter Egg)

Paint the Mega Easter Egg, then stick the stickers!

Le funky bunny!

After some time of artsying we proceeded with playing and if papa was nice we would put Nouky or Mickey or another toddler cartoon on so papa could enjoy, some times in English and some times in Dutch.  Then we proceeded in some play activities, every other day we made the master bed room in a different theme from bouncy castle and the princess, to car ball pit and the funny driver, and the pink-green home of the two giant todds.  Those activities kept us busy all morning until Eten (Eat) and napping.

Pink-green home of the two giant todds.

When Miabelle and Noelie woke up from their nap, we did some coloring and decorating:

Funky pants.

Coloring between (humm!) lines.

EGG!!!!!

Go! papa Go! decorate a little while we chill!

Then after coloring some more "eten" (eat), some more playing and finally bath, story time and bed.  My oh my did the girls have a blast going to bed (as posted in the previous blog) but the best thing was that the girls some times fell asleep together in the same bed.

Sleeping together.

The girls kept papa busy so needless to say after a little work in the evening..sleepy sleep was soon to follow.

But the "piece-de-resistance" was our attempt to surprise mama with a home decorated for Easter.  All our arts and crafts was leading to this:

Happy Easter Mama!

Et voila, mission accomplished!

The best time was when we got a 80F (26.66C) day on Tuesday allowing us to exit the house with our new outdoor wagon: THE PRINCESS WAGON.

  

Papa clearly thought that 80F (26.6 C) needed a jacket. Hellooo Dopey Smurf!!

We went to the park area in front of the University of Cincinnati, the girls had such a trip that bringing them back home needed some serious negotiations because as soon as I told them "let's go home" they said "NO!!" and each of them ran in opposite directions giggling away knowing very well what they were doing.  The students in the park must have thought that a scene was filmed for the new movie "What to expect when expecting", cause man did the girls make me run after them.  Them little toddlers are some serious strategists.  Once I was able to catch them, strap them down in the wagon and get home; they screamed bloody murder when I got them out of the wagon in the apartment.  I am not exaggerating but I am certain some people thought about calling 911.

No toddler left behind!

Miabelle was uncomfortable with the grass so Noelie grabbed Miabelle's hand on her own initiative.

"Come B-Belle come!" Noelie screamed.

Taking it all in with more comfort this time.

Noelie always happy when out and about.

UC Campus

It was an absolute awesome and unforgettable week, so the girls and I have told mama that every year she should go on a vacation with her girlfriends to take a break leaving the little monkeys and the big monkey in charge of the house.  Of course we all missed mama, therefore she is not getting a minute more than 1 week.  But the girls can handle papa for 1 week.  Miabelle repeated every morning "Mama Home, Mama Home?" and Noelie repeated every night "Where is Mama?" ... papa on the other hand was happy to have the queen bed to himself, heavenly! ;)  ..."Here comes the couch! Smurf!" says the little not so brilliant voice in my head.

All kidding aside, we are very happy to have the cat back in the house with all them little mouse.  Welcome home mama!!!!!

Update on the extremely successful fundraiser to follow on Sunday: stay tuned!

Sleepy sleep,

Day 276: Engraftment 92%, up from 91% - still lower than the top of 98%

A few days ago we received the new engraftment numbers.  The very good news is that they remain high at 92%, coming from 91% a few weeks ago, and they numbers remain relatively stable which is important.  However they were at 98% 2.5 months ago.  Engraftment numbers can fluctuate over time (unlike what most people believe).  In some cases it can keep sliding until they reach rock bottom levels and thus a Bone Marrow fails years after transplant.  Or, in most cases the swings tend to eventually land upwards at or close to 100%.  We are betting on the latter.  Nobody likes to see the numbers drop, but this volatility is like the financial markets, I guess; some times you need a healthy pullback to stage a healthier and stronger recovery.

Roller coaster at work, roller coaster at home... we are loving it.  With the G Family you never get bored. that is certain.  Up, Down...Down, Up...Up, Down....  Like Miabelle and Noelie would say : "More!! More!!".  Up, Down...Down, Up...etc....

sssssnnnnnnnooooooorrrrrrrrrrrrrrrrrr!

Allow me to paint you a picture of how I am writing this blog.   I am hunched over like an old man resting my head, which feels like lead, on my desk while typing with one hand as my other hand is dangling like a clock all from twin power exhaustion.  I truly bow for the single working parent with kids and the mothers of multiples. and if those mothers of multiples work I add them to my list of goddesses, cause my god are these two little bundles of joy full of twin powers or what.

sssssnnnnooooorrrrrrrrr....sorry just past out.  Where was I?  Yes! Bundles of joy.  Yesterday, as well as tonight as I write this blog, princess Noelie and Miabelle, rulers of this castle, are having a party in Noelie's bed chatting it up like to little hens.  Sorry I am wrong...they just ran across the room and jumped into Miabelle's bed to continue the chat.  And they do this so elegantly and STILL full of energy after a day of playing, feasting, arts and crafts, cooking, clean up, Baby Einstein time and running around.  They make it look like they slept all day.  What the smurf is up with that?  During nap time...oh, what is nap time?  A concept completely foreign to Noelie.  They will both play and play until Miabelle literally passes out on the carpet of the room from exhaustion while super Noelie just keeps going like an energizer bunny.  And it doesn't matter how many times I run into the room and at first explain to them its sleepy sleep time and eventually yell at them, they look at me with their puppy eyes, smile and say "yes papa", crawl into their beds ... to then 5 minutes later jump out and run around like to little toddlers gone crazy.  However, they do fear king papa (in your dreams old man) because when I approached the room I hear Miabelle screaming "papa coming!! papa coming!!" and before I even open the door they are back in their beds.  The funniest part of that is when Noelie acts as if she is sleeping by doing a fake snorr with her eyes closed.  Just hilarious!!  When I say "Noelie are you sleeping", she answers "yes papa I am sleepy sleep".

We are having a blast though but I think when mama comes back papa will need a vacation.

FYI: Noelie has now named herself Super Noelie.  Lightning is out!  It is Super Noelie after the famous Super Grover 2.0 from Sesame Street (Superman who is Superman).

Here are the princesses caught in the act on camera (I apologize for the picture quality but indeed that is Noelie and Miabelle in the picture and not the Lochness monster of Ohio):

Noelie sshhhtt Papa can see us, act sleepy sleep

Acting...pure acting!

Trouble in the making.

Trouble is our middle name!

8pm is bed time and this was taken at 8.45pm after I went in twice.  Clear disregard of papa's authority.  Girls!!! Remember that BMW at 16 is already a mini since your recent monkeying and if you continue like that you will have to keep your tricycles for life cause this papa and mama are not going to get you any car or Sweet 16 celebration!  Capito!!  Unbelievable them G-girls.

I am exhausted...sleepy sleep,
O.

What an event and what a dance we made to celebrate

I cannot say too much as V has been appointed by chief editors Miabelle and Noelie to write a blog posting on the amazing Fundraiser.  What I can say is that, from the emails and calls I received this afternoon, it seems that it was a major success!!  Although V had much anxiety from leaving the cocoon and reintegrating into society with such a big bang event, after the event she called me and I have not heard her this happy since the birth of our two girls.  It seems, and she will write about it, that the joy of seeing everybody as well as the immense support and success of this event put her on cloud 9.  From all of us in fab Ohio a big thank you to all of those who attended, to all of those who have donated and contributed, and a special thank you to the M.O.M.I.E.s who truly are astonishing for organizing such a big event, for making it so absolutely beautiful and successful but most importantly for doing this while they have certainly VERY little time on their hands with their little kids running around.  We are all very grateful!!

B-Belle news: Miabelle went in for her regular checkup on Wednesday.  Nothing to report but good news.  All her lab numbers are perfect, even the liver enzymes have come down to acceptable levels.  As a result we are reducing the liver medication to once in the morning.  It taste like sugar water so Miabelle loves it.  In addition, during previous lab work her glucose levels were elevated, diabetes being a possible result of a BMT procedure and the fact that Type 1 diabetes runs in the family, we had some concerns.  However, we are glad to report that for now all glucose levels are back to normal implying that no diabetes is present at this time and that feeding you child before lab work is a bad idea!  They also did an engraftment test, remember the last one showed a decline from 97% to 93%.  We should have the results on Monday.  Fingers crossed...100% we hope.

On the home front, it is clear to me that the girls know very well how to wrap papa around their fingers...actually, one single finger.  Indeed, I king papa had to abdicate as the revolutionary army, composed of Miabelle and Noelie, have seized power.  When queen mama comes back, this king will be in serous trouble.  My kingdom has failed in 48 hours... I am ashamed.  Let me give you an example of how these to Machiavellic little Princess go to work.

Let's start with feeding.  At lunch, I asked (Note 1 to papas: first mistake "Never ASK") "what would you like to eat?"  To which these two beautiful girls responded in perfect symphonic harmony: "Hot Dog Papa! Hot Dog Papa!"  So foolish papa made hot dogs (Note 2 to papas: mistake number two "You never make what they ask for-it is a sign of weakness they spot by you agreeing to their demands").  When I called them to eat by screaming "Eten! Hot Dogs!" (Dutch for Eat), the first response I got from Princess Miabelle was "No Papa No...No Ot Dog!".  Right there I felt betrayal creeping up on me and it only took a few seconds, because obviously united they conquer, for Princess Noelie to join in by saying "No Papa...No Eten!"  At that exact instant I knew that I was mislead and that a battle was about to unleash itself (Note 3 to papas: when battle is about to rage, show no remorse, take no prisoners... if you can).  Unfortunately, although I advised papas not to take any remorse, I did not follow my own advice.  My brilliant mind, or at least I thought so, whispered softly "oh! wise king. let them play a little longer and then they will come to you begging for food.  Then you will crush them with the hot dog and some veggies". Well, I regret to inform that my brilliant mind was not so brilliant after all: the princesses never came begging. (Note 4 to papas: "princesses don't beg, they are too proud").  Needless to say, the battle began and with many Cirque-du-Soleil-style acrobatic movements I managed to plant them in their feeding chairs.  I also care to mention that my left ear is deaf because Noelie screamed so loud that still now 10 hours later I can hear submarine sirens going off and even the red flashing alarm lights are visible in my eyes. However, kings don't back down... EVER!  I proceeded by using a decoy , namely my good friend Sesame Street, which seemed to work cause it calmed them down (Note to papas 5: "if you use a decoy rest assured they are fooling you in thinking that it works). Once contained in their feeding chairs, my brilliant not-so-brilliant mind claimed victory.  Like any mother knows, I was wrong...once AGAIN my brilliant absolutely-not-so brilliant mind failed me MISERABLY. So Chef Olivier presented some delicious Hot Dogs with beans and rice (which we all know they love)...WRONG!  (Note to papas 6: "if it works for mama, it doesn't necessarily will work for papa").  Well, I will stop hear by saying: I failed... I failed and .... I failed.  Hot Dog went on the floor, beans went on papa's lap.  Merci beaucoup!!  Needless to say the second attempt was as bad as the first, and I had to settle for Mozarella

Let's finish with sleeping as an example.  Tonight bed routine started at 7pm with a nice warm bath. All went well, they splashed papa in the face but that is normal because they also do it to mama (Note to papas 8: "if they also do the same with mama, accept it as normal") .  Then, in the weekends, we do 30 minutes of Baby Einstein video, which they love.  This went a little less well, as Noelie who is a true Joker, monkeyed around with the ball pit.  I could hear mama's voice saying "why did you keep the ball pit in the room while watching Einstein".  As king papa, I will assume my responsibility on that one.  So it is not Noelie's fault but papa's... obviously.  Then after Einstein Time (like we call it) I said to the princesses "slapen!" (Dutch for "sleep")... yeah! Not a good idea to play open cards (Note to papas 9: "Never play open cars").  The "p" had not crossed me lips yet and like lightning they burst out of the room into the living room giggling and screaming "No slapen-No slapen!!!"  You can imagine, my eyes rolled 360 degrees.  And just as they had planned I ran after them like Quasimodo, exhausted and by now crippled from fatigue.  Giggle here, giggle there!  Eventually I captured them and dragged them to their beds.  Problem: V and I put the girls to bed every night together.  Being a solo act for the week it is not possible.  Thus I grabbed one, gave her a little shmuzy on the head and said "sleepy sleep" and put Miabelle down.  Then I grabbed Noelie, gave her a shmuzy also, said "sleepy sleep" and put her down.  It did not take a second after I put Noelie down before Miabelle started crying.  So, like every papa would do, I crossed the room, went to Miabelle grabbed her, calmed her down and put her down.  It did not take half a second after putting Miabelle down that Noelie started to cry.  So, like every papa would do, I went to Noelie, grabbed her, calmed her down and put her down.  It did not take a... well I am certain by now you get the point.  This went on for a about three turns, after which my brilliant mind said to me "SUCKER!"  For once my brilliant mind was right!

To summarize all the "Notes to papas": we are in a losing position from the beginning cause they know that we papas love our little girls a little too much... and they are masters in using it against us. 

To conclude this blog, the girls did a little dance to celebrate the success of the fundraising.  Please do not pay attention to the text as the girls do not understand it...nor do I.  the point is the dance not the song!

Let's get the party started!!

In Dutch they say "Als de kat van huis is, dansen de muizen" which means "When the cat is gone, the mice dance".  So, we are partying like rockstar mice!!

Sleepy sleep

The sucker king