There Are No Words

Well, we made it through the day.  Our little Granty was laid to rest today, with a personalized giraffe mat draping his tiny casket.  I don't think there was a dry-eye in the church, but we did manage to have a beautiful service and burial honoring our little boy.  Shortly after the service at the cemetery concluded no one seemed to want to leave, but the skies opened up and it began pouring rain....a sign that it was time for us to head to the luncheon.

The lunch provided a nice conclusion to the day.  The church hall was filled with stuffed giraffes and balloons, providing a bit of cheer on such a somber day.  It was a great celebration of our baby boy, complete with beautiful speeches from family and friends.  Damon and I are so humbled and encouraged by the support we have received throughout the day; the spirit of love, hope, faith and family that we have felt is truly a testament to Grant and his legacy.

I summoned enough strength to deliver the eulogy (no meltdown nor need for my brother to finish).  I will never be able to capture and articulate the full essence of my beloved Grant, but I hope the eulogy below made him proud:

June 3, 2012 - - - my beloved Grant is born.

There Are No Words....

There are no words that can capture the joy Damon and I felt when Grant entered our lives in the early morning of June 3^rd, 2012.  When I first laid eyes on my little boy, I remember exclaiming, “He looks just like Alexa!”, as Damon looked at me like I was crazy that I was able to find a resemblance in a boy who wasn’t even 10 seconds old.  It was love instantly.

There are no words that can describe the completeness that Grant brought to our family.  At the ultrasound in which we found out I was carrying a boy, I remember how Damon’s ears literally perked up at the news - - he had his ‘variety pack’…a girl and a boy.  I will never forget how excited Alexa was to meet her beloved baby brother, and, after she got over the initial disappointment that he wasn’t “big” or an instant playmate, she immediately embraced her big sister role and coined the name “Granty.”  We were a perfect family of four.

There are no words that can adequately describe the joy Grant brought to our lives.  Although we had a few all-nighters and drives around Scottsdale at 3am, Granty had a fantastic disposition and was a very easy baby.  He loved bathtime, and if Alexa wasn’t helping me give him a bath, that usually meant she had crammed herself into his baby bathtub so that she and Granty could take a bath together.  Grant helped to complete our family dynamic, and he could usually be heard happily babbling in his monkey bouncy seat or squawking loudly if he didn’t feel he was getting enough attention.  Since Damon was usually at work, Alexa, Grant and I had developed our nightly routine, and it became more fun and interactive the older Grant became.  Alexa and I would play with Granty, hold him up to make him dance or joke about him eating her food while she’d pretend to drink his formula.  When he learned to sit in the Bumbo seat, Grant was usually perched in the center of the table while we would eat dinner.  We would laugh, make him coo and sing songs Alexa had learned that day in school.  Pure joy.

There were no words needed to elicit one of my favorite responses from Grant.  Oftentimes when I would lean in to kiss my baby boy, I would begin with an “Ahhh” to let him know I was coming in for a kiss.  He quickly developed a conditioned response to hearing the “Ahhh”, and it didn’t matter if I was across the room or right next to him, I could always count on my Granty boy to open his mouth and ready himself to return my kiss.  This simple sound always elicited the same response and brought a smile to my face and proudness in my heart.

There are no words to describe the devastation and grief that Damon and I felt on the night of September 27^th, when Grant was first diagnosed with a brain tumor.  However, as if to assure us everything would be okay, Grant continued to be his normal cheerful self, charming all nurses he met and quickly tagging himself as the most popular patient in PICU.  His sunny disposition continued to provide strength and support for Damon and myself, and on the morning of his biopsy, he busted into a bout of laughter unlike anything we’d heard from him before.  The sound of his laugh is imprinted in my mind, and just thinking about his sweet giggle brings a smile to my face.  After all he went through - - surgeries, lumbar punctures, blood draws and chemo - - I can honestly say that my Granty never had a bad day.  His personality was effervescent and his smile was infectious.  Being with Grant made me happy, and I soaked up every minute I could spend with my little ‘Mommy’s boy.’

Grant needed no words to make a lasting impact upon the world.  The blog initially began as a site in which I could keep everyone informed of Grant’s condition, but Grant himself, not my words, turned it into so much more.  My cousin Sara said it best: “How incredible that such a sweet boy who never uttered a single word could be one of the best teachers of life’s greatest lessons?”  The lessons my beloved Granty taught us are too numerous to count: not sweating the small stuff in life, the value of family, maintaining a positive disposition even in the toughest situations…the list goes on and on.  Grant was living his life to the fullest, and through the chronicling of his daily activities and vivacious personality, he inspired hundreds, if not thousands, of people.  Grant provided a new perspective on life, one rooted in hope, faith, family, and, most importantly, love.  Grant was love.

There are no words to explain the sadness and emptiness that we feel in our hearts for the loss of our beloved Granty.  I miss my baby boy – the snuggling, his angelic eyes, the babbling, his smile, his kisses, seeing him clutch his beloved giraffe blankie – more than I can ever describe. This void in my heart will never disappear, but I am determined to preserve the legacy of this amazing and magnificent boy. His spirit will always be with me, and he will always be in the forefront of my mind.  I have a new-found love of giraffes, Granty’s official mascot, and will always think of my precious boy whenever I see one.  In his 175 days of life, Grant made me a better person, a better wife and a better mother. 

There will be no words needed when I see my beloved Granty again.  I’ll simply say, “Ahhh” and wait for his kiss.

A Herd of Giraffes

Our little Granty is amassing quite the herd of giraffes....through the generosity of friends and family, Grant is now the proud parent of giraffes in St. Louis, Chicago, Denver, Houston, Fresno and San Diego.  Six giraffes - - - wow.  Looks like the Hovannisian family will be spending a lot of time visiting zoos in 2013 and meeting the giraffes honoring the memory of Grant.  Alexa and I are going to convert Damon into a zoo-lover after all. :)

The final details have fallen into place for tomorrow, and Damon and I are bracing ourselves for what will likely be the hardest day of our lives to-date.  I'm praying that I will have the strength to deliver the eulogy that I have written for Grant.  I will be breaking all of the rules of public speaking, keeping my head down and reading directly from the script that I've written, and my brother is on standby in case I'm not able to make it through the speech.  Ugh.

Please keep all of us in your thoughts and prayers tomorrow, and please say a special prayer at 11am Pacific Time as we say 'goodbye' to Granty for the final time.

Reality Check

It's really happening....Damon, Alexa and I made the flight to Fresno this afternoon.  As soon as we landed, we had to rush over to the newspaper's office to ensure they published Grant's obituary in the Thursday paper (talk about a frustrating process....oye!).  The Fresno obituary was the last major component that needed to fall in place; everything else pretty well-organized.  I think I have checked the FedEx site about 20x today to make sure the shipments of the programs, photos and stuffed giraffes are on-time :)

Writing Grant's obituary was a much tougher assignment than I ever expected - - it's very tough to capture the essence of this magnificent little boy in 3" of newspaper text.  I had to create some very abridged versions for publications in the Fresno Bee and St. Louis Post-Dispatch, but I've included the full-length version below. 

It's still unbelievable to me that I had to create an obituary for my son....we'll get through this though & come out stronger than we were before!

Hovannisian, Grant Vartkes ("Granty")

Born to Connie and Damon on June 3^rd, 2012, Grant passed away on November 25^th 2012, in his mother’s arms.  In his short five months of life, Grant inspired many with his sunny disposition, angelic eyes and perpetual smile despite the challenges he faced.  He taught everyone lessons of love, life and family.  In addition to his parents, Grant leaves behind an adoring sister Alexa, maternal grandparents Gene and Kathy Niehoff, and fraternal grandparents Vernon and Carol Hovannisian.  He is also survived by his aunts and uncles, Karen Storer, Steve and Carolyn Niehoff, Terri and Larry Holzen, Julie and Eric Huss, Gia and Andrew Kazarian, and Vincent Hovannisian.  Grant’s spirit will also live in his cousins Christian and Marie Storer, Abby and Katie Niehoff, Mara and Xavier Holzen, Maren Huss and Luke Kazarian.  Our beloved “Granty” was never without a smile or his giraffe blankie.  We will never see another giraffe without thinking of our precious little boy.  He will live in our hearts and minds forever.  A funeral service will be held at Holy Trinity Armenian Apostolic Church in Fresno, California, Friday, November 30, 2012, at 11:00 a.m.  In lieu of flowers, contributions may be made in Grant's name to the Phoenix Children's Hospital Foundation - online at www.phoenixchildrens.com or 2929 East Camelback Road, Ste 122 Phoenix, AZ 85016. 

Holiday Spirit

Wow - this is tough.  Damon and I have been staying busy planning various elements of the funeral services, but whenever there's a lapse in activity, my mind goes immediately to our little boy.  Just seeing his picture today made me tear up....Friday's going to be rough.

Alexa is definitely a nice distraction for all of us.  It's a harsh reality to have to explain death to a three-year-old in unambiguous terms.  The other night when we told her that Granty had died, she responded by asking me if I had another baby in my tummy.  Oye :)  She misses her brother dearly and asks about him and why he died, but she quickly changes focus to something else.  Alexa is a huge fan of holiday decorations (she doesn't care what holiday), so my father-in-law was kind enough to purchase a Christmas tree while he was in town.  It's been a never-ending decorating process, and Alexa is loving every minute of it.  The house is a mess of glitter and decor, but it is nice to be reminded of the holiday spirit.

In going through all the photos today, I found some from a couple months back that capture the big sister role Alexa cherished so much.  She knows the book "Purplelicious" by rote, so she decided to 'read' to Granty one night before bed (she had taken a bath - hence the lack of clothing).  Ahh....I'm going to miss this.

A captive audience.

The Arrangements

The past 20+ hours have been a surreal experience for Damon and myself; we are making decisions that no parent ever wants to make for a child.  Since neither Damon nor I are from Arizona, we made the decision to hold Granty's funeral and burial in Fresno, CA.  Although we have begun to establish roots here, we felt it was very important that Grant's final resting place be near family members who have already passed before us.  The funeral service (no visitation) will be held at 11am on Friday, November 30th:

Holy Trinity Armenian Apostolic Church
2226 Ventura Ave.
Fresno, CA  93721

In lieu of flowers, contributions may be made in Grant's name to the Phoenix Children's Hospital Foundation, Center for Cancer and Blood Disorders (note: Neuro Oncology) - - online at www.phoenixchildrens.com or by mail at 2929 East Camelback Road, Ste 122 Phoenix, AZ 85016. 

We know first-hand how wonderful the services and support are at Phoenix Children's Hospital, and Damon, Alexa and I will continue to be very involved through its volunteer programs...yet another way we plan to keep Grant's legacy.

Thank you so much for the outpouring of support that has been given to our families - the phone calls, blog comments, text messages, etc. have been inspiring and are truly helping us to make the best of this situation.

And The Legacy Begins...

Our beloved Granty passsed away tonight - - - he was in my arms and sighed just like his normal self.    We know he's in a better place, and without a doubt, there was a line waiting to hold and play with our beautiful baby boy.  He held on until the very end, proving his heart was stronger than anyone ever imagined.

Damon and I are so lucky to have experienced the past five months with Grant.  His sunny disposition, infectious smile and angelic eyes are forever in my heart and mind.  I have so many good memories of the time I spent with Grant, and I wouldn't trade a moment of the past five-months for anything.  He made our family complete, and he's already a part of each of us.  We definitely have a guardian angel, and Damon and I put in a special request to Granty that he watch out for his big sister Alexa....D & I need all of the help we can get :)

This blog will not end today.  My little boy taught me more than I will ever be able to relay, but I am going to ensure that I do everything I can to continue to lessons he taught me.  Granty will never be forgotten.

One thing is for certain - I know that I will never see another giraffe without thinking of my precious baby boy.

Our Little Superman.

Granty's Giraffe

Alstott the puggle is no longer the only pet of the Hovannisian family; today Grant became a Zoo Parent to a reticulated giraffe at the St. Louis Zoo.  It seemed like a very appropriate tribute to our little Granty, as the giraffe has evolved his mascot during the past five months.  I have always loved the St. Louis Zoo, so I'm looking forward to taking Alexa there when we're in town for Christmas.  I'm sure we'll spend more time than ever before in the African Savanna habitat.  I'll find out the giraffe's name (it should be on the adoption papers) so the St. Louis contingency can seek out Granty's giraffe on the next visit to the zoo.  Our little guy will have a lasting legacy at the zoo, as we'll make sure he adopts a giraffe each year.

Grant continues to redefine the word "perseverance" and is ignoring what the vital signs say 'should' be happening.  He's extremely weak, but his heart is proving to be stronger than anyone imagined.  I think it's becoming the most "unsurprising surprise" for the PICU team to see us each shift, as Grant's reputation is preceding him.  I used to think I was stubborn, but Grant's taking it to a whole new echelon.

Hovey-Strong

There is no doubt that Grant is a Niehoff-Hovannisian - - he embodies the strength, determination, drive and stubbornness that runs through each side of the families.  Grant continues to defy all expectations, and he is fighting until the very end.  Each PICU shift seems surprised to see us, and despite the low vitals, Grant's staying with us and resting comfortably.

Yesterday we had a wonderful Thanksgiving at the hospital with our families and friends.  We spent 7+  hours outside of his hospital room, enjoying the beautiful Arizona weather on the patio and in the family lounge watching the football games.  While everyone enjoyed the Thanksgiving feast prepared by my siblings, Granty slept peacefully in the Radio Flyer wagon with his beloved giraffe blankie and stuffed Fredbird.

We know that our physical time with Grant is very limited, but Damon and I are embracing every minute of it.  I cannot believe how lucky we are to have been blessed with this little boy, who at a young age, personifies the best in both of us.

The Niehoff family.

The Hovannisian family.

Granty with his two godfathers, Eric and Tommy.

Hanging Tough

Our little guy is one tough kid - - he's still hanging in here with us, and he is resting very comfortably in the bed.  The staff in PICU continues to be compassionate and respectful of us, providing us with a lot of flexibility and privacy.  At the suggestion of the PICU team, we are going to spend a lot of the day outside on a private patio at the hospital.  Damon scoped out the patio and made the decision that we'll have our Thanksgiving dinner with our entire family there.  Thankfully the Niehoff siblings are up to the challenge of preparing the meal and packing it 'to go', so we should have an enjoyable afternoon outside of the hospital room, surrounded by our immediate family.  Granty will be on the patio with us; one of the nurses is very excited to prepare his chariot (a Radio Flyer wagon) so that he can be moved comfortably and in style.  I'm so proud that my little boy is so tough; he continues to amaze and inspire us.

Pure Innocence.

Rally Boy

Grant's condition deteriorated pretty quickly last night, so we will not be going home but rather spending his final time in the comfort of PICU.  Damon and I have been with him, holding him, all night and day.  He continues to be a fighter until the very end - - every time his vitals have dropped to critical levels, he rallies each time.  There's no doubt that he's in his final moments, but it's nice to see our little Champ still has his perseverance.  The attending PICU doctor came in as I held him on my chest, and he said he was convinced Granty was hanging around because he was enjoying the love and cuddling he's been getting.  There's no doubt that this boy is loved - - the stream of visitors (especially medical personnel and staff) over the past few days has been unlike anything the PICU nurses have seen before.  The views and comments on the blog have touched Damon and myself, and further reiterate how much our little Granty is loved.

Resting Comfortably

The team at Phoenix Children's has done a wonderful job making sure Grant (as well as the rest of the family) is comfortable.  Yesterday afternoon they moved the crib out of the room and brought in a bed so that people could hold and snuggle Grant.  He spent the entire night sleeping on either Damon or myself; I think he'll be sleeping with one of us for the rest of his life.  The PICU staff also made sure that hospital security allowed all of our family in the room well-after normal visiting hours.

Damon and I are fortunate to be surrounded by our families - - my parents and two sisters flew in yesterday night, another sister and my brother will be here today.  Both of Damon's parents are also here.  It was very nice to have a house full of people when I stopped in this morning, with everyone quickly stepping into fill the roles at home.  Julie & Karen (my sisters) already have the Thanksgiving dinner shopping list and a list for Target of the toys that Santa Claus will be giving Alexa - - - Santa's frugal and follows the sales ads. :)

When I came back to the hospital after a quick break at home to get Alexa to school, Grant was resting so peacefully in the bed.  The nurses had given him a bath, all of his vitals were good, and he looked like a little angel holding a stuffed Fredbird.  He's still fighting until the very end - - his grip is slight on his right side, but he's quick to grab a finger, pull my hair or feel for Damon's goatee.

We're still learning of our options for going home, but until then, we just want to keep our beloved Granty comfortable and peaceful.  There's a very good chance our boy may not make it home. :(

Sleeping peacefully.

Papa Hovey with his beloved grandson.

Snuggling with Daddy.

One of the loves of my life.

At A Loss

I cannot fathom that I'm even writing this, and I do not know how to capture my thoughts or emotions right now.  Unfortunately Grant's tumor has gotten the best of him, and there is nothing medically that can be done to cure nor treat his condition.  The high heart rate has been attributed to bleeding in the tumor - something that was discovered in the MRI conducted this morning.  The Chief of Oncology, who has been with us from day one of the discovery of the tumor, has advised Damon and I that the prognosis is grave.  The size of the tumor, its location, etc... is just too great to overcome.  Collectively Damon and I made the excruciating decision of DNR should the situation present itself; the Oncologist said we would simply be prolonging and not fixing the situation.

Right now our mission is solely Grant's comfort; the doctors (PICU, Oncology, Endocrinology) are working collaboratively to develop a plan that provides comfort and potentially enables him to spend his final days at home with our family.

I know that Damon and I can look at everything that has happened over the past five-months with confidence that we have done everything we can for our beloved little boy.  We will need the love and support of friends and family more than ever before - - not just now, but in the months and years to come.

We just completed an impromptu baptism in the hospital room, as the priest from the Armenian Church in Scottsdale was gracious enough to come to perform the sacrament.  In a rather appropriate circumstance, Grant is lucky enough to have two godfathers - Damon's friends Tommy and Eric.  For those of you who don't know Damon, he has always been surrounded by a close, relatively small group of loyal guy friends.  It's only fitting that Damon's little boy has the same - - two godfathers who will always be a part of our posse.

A five-month-old boy has taught me more than I will ever learn in school and life.  I don't need to look far to find a hero...my precious, angelic little boy with the sweetest demeanor a mother could ever want.

Rough Recovery

Last night was a rough night for Grant, as his recovery from the shunt surgery has not been as quick and easy as we had (probably way too optimistically) hoped.  The PICU staff has mentioned that neuro cases are the toughest in terms of pain management and finding the right balance and combination of meds.  They're still trying to find that balance for the little guy...

Grant's heart rate has been extremely high (220+ beats per minute versus a normal 120-160 range), and this rapid rate has baffled the entire PICU medical team.  I think nearly every doctor and nurse was in Grant's room at some point last night, trying to hypothesize what was causing the condition, as it's opposite of what they see in most brain tumor patients.  He's had chest x-rays, an EKG and is scheduled for a lot more tests today.

Unfortunately an accelerated heart rate is usually a sign of pain, but Grant's not showing too many other signs - he's not crying or thrashing around.  He definitely has a long day ahead, so please keep sending positive thoughts and praying for my little guy.  I will continue to update the blog throughout the day for any changes in his condition.

Out of Surgery

The surgical procedure to insert the shunt went off without a hitch - - Grant is already back in his PICU room, grunting as he wakes up from the anesthesia.  The Neurosurgeon went through the back left side of his head, and the shunt runs (internally) through his neck and into his stomach, with another small incision near his belly button.  Grant's amassing quite the collection of battle wounds between the biopsy, broviac and this procedure.

Grant will be resting in the prone position the rest of the day, and we won't be able to hold him until tonight at the earliest to avoid jostling the area.  The surgery team said Grant did really well during the procedure (we expected nothing less from the little guy), and we should start to see improvements in his eyes over the next day as the pressure is released.  The shunt is pretty amazing - - it's programmed to activate at a pre-determined pressure level, and if the pressure in Grant's brain is above that level, the shunt will open up and begin draining spinal fluid into his stomach.  The miracles of modern medicine.

Please continue to keep Grant in your thoughts and prayers, and we'll update the blog to keep everyone abreast of his condition.

Fearless before surgery - resting comfortably.

Back in PICU after surgery; everyone in PICU ready for his return.

Grant's still a Champ - gradually coming out of anesthesia.

Back in the ICU

Unfortunately we've had a setback in Grant's condition, and he has been admitted to the ICU at Phoenix Children's again.  Yesterday we had noticed the "sunsetting" (I had called it drooping, but I've picked up on the medical jargon) of his eyes, and this morning I noticed that Grant was not reaching for any toys and did not appear to see anything.  I called the Oncology line, and the doctor on-call advised me to bring him to the ER because she was concerned about the pressure on this brain.

At the ER, they noticed his eyes were unresponsive to light and saw swelling of his fontanel (soft spot) and immediately ordered a CT scan.  Damon and I have already met with the neurosurgeon, and he has diagnosed the condition as hydrocephalus.  The ventricles in Grant's brain have swelled, and spinal fluid is not draining properly.  Grant is scheduled for surgery tomorrow (Sunday) at 8:30am, and the neurosurgeon is going to insert a shunt in the back of his brain.  The shunt is essentially a tube that will run from his brain, down through his neck and into his stomach; the fluid will go directly into his stomach and relieve the pressure in his brain.

The hydrocephalus is not necessarily as sign that the tumor has grown; the neurosurgeon said there can be so many causes and it may not even be related to the size of the tumor.  He did mention the "sunsetting" of the eyes should disappear within hours of surgery, but we have no idea if there will be a lasting effect upon Grant's vision.

I'm sure we'll learn a lot more in the coming days (the PICU doctor did say I could pass for a third year resident with my acquired medical knowledge :)), and I will definitely update the blog accordingly.  Please keep us in your thoughts and prayers and hope that this is just a temporary, not permanent setback for Grant the Champ!

Resting comfortably tonight - and still clutching his beloved giraffe blankie.

Having no problem adjusting to the crib at the hospital.

Chatterbox

He's back....!  Grant was back to his normal self today, and he seemed to be making up for the past few days by chatting up a storm.  I came home from work late this afternoon and had to hop on a conference call, and I think Grant thought he was supposed to be hosting the call.  I don't think he stopped babbling once during the 30 minute duration of the conference!  His chatter was music to my ears - I'm glad to have my baby boy back.

When Grant and I went to pick up Alexa from school today, I was lucky enough to run into one of the teachers from Grant's "would've been" classroom.  She was very happy to see Grant and was impressed at how good the little guy looks.  The last time she had seen Grant was when we went for his "meet & greet" nearly two-months ago (pre-diagnosis).  It was great to see her, and it was so nice to hear such a favorable assessment from someone who hadn't seen Grant in awhile.  His infant classroom and the rest of the Montessori school has been so supportive to us through this entire process; everyone has been so positive and encouraging.  I think Grant's probably the most famous non-student they've ever had... :)  I'm looking forward to the day when he's a bubbly little boy in Ms. Sarah's toddler classroom and all of this treatment is behind us (I hope!).

Still clutching the giraffe blankie tonight.

A little cranky - - it is almost 11pm...

His eyes are starting to 'droop' - a pretty normal symptom of
brain tumors.  Not necessarily bad - just a sign of pressure :(



Mr. Minky

The chemo seemed to wear off today, as Grant was much more alert and lively compared to the previous two days.  I know Damon and I wish he could sleep as well at night as he does during the day, but Grant was struggling to get comfortable last night.  I'm not sure if it's the placement of the broviac (it's shifted up a bit due to where the dressing was taped), but he would not lay on his stomach - his normal position - last night.  Damon and I did a lot of rocking with him laying on his back, positioned on our legs.  Thankfully, I finally got him to go to sleep around 5:15am, a whopping 15 minutes before my alarm was scheduled :)  Oh well...it could be a lot worse.  We'll catch up on sleep when the kiddos are teenagers - haha.

During Grant's initial hospitalization at Phoenix Children's, he became a 'pacifier kid' overnight, quickly adopting the Nuk pacifiers as a soothing mechanism.  After several rounds of chemo, he gave up the pacifier cold-turkey, likely due to a change in taste from the medication.  He has since developed a new soothing mechanism - minky blankets.  This little guy is a sucker for soft, luxe blankets, and he is happiest when burrowing into one of them.  It's pretty amazing the power that this minky texture holds - - he can be tossing & turning one minute, and as soon as a minky blanket enters the fray, he immediately cuddles up to it and calms himself.  You know life isn't too bad when a soft blanket can make everything better!

Relaxing in the chair - never far from minky blankets.

Cuddling up with the giraffe blankie (& Dad).

Checking his grip on the the blankie - he won't let it go!

Zonked!

This round of chemo seems to have gotten the best of Grant - he has been one sleepy guy since yesterday's dose of Vincristine.  During the past two days, he has been awake for only brief periods of time - 45 minutes, at best.  Although the chemo may have gotten the best of him physically, it has not diminished his spirit.  He's still a happy and chatty little boy when he's awake!

At clinic yesterday, I was able to find out a bit more about Grant's course of treatment.  After the 10 rounds in this phase, he'll have only a 3-week break before resuming chemo again (duration of next phase tbd).  The follow-up MRI will occur soon after the tenth round, and we're still hoping for a 'no growth' result for Phase One.  The Oncologist we saw yesterday [from St. Louis - - Ladue Horton Watkins:) - - answering the typical StL question of 'Where did you go to high school?'] did mention that Grant's type of tumor usually responds better to chemo than the lower grade, but she still advised that 'no growth' is considered a successful result for Phase One.  Praying and hoping.....I have all of the confidence in the world in my little Champ!

So tired!

Playing with interlocking rings - despite
the 'rolling' of his eyes, he's able to reach
and track the toys pretty well.

Playtime's over.  Ready to go back to sleep.

Six Down...Four To Go

Round #6 is complete!  Grant's blood counts looked good today, so he was a 'go' for the dosage of Vincristine today.  I had expected a short appointment today because Grant was only being administered one drug, but somehow that never seems to come to fruition.  The new computerized check-in system at clinic didn't flag that we were there, so we waited over an hour in the waiting room to be taken back for vitals.  By the time we went through all of the normal appointment procedures - vitals, blood draw, visit and examination by the Oncologist, broviac dressing change and review of blood counts - Grant was one worn-out little boy!  I set him in his carseat while we waited for the chemo med, and he did not move a muscle before, during nor after the chemo.  The nurse said he was her easiest patient ever!

He mustered up some energy for the car ride home (his exposure to the outside world), but he has been pretty zonked out the rest of the day.  I didn't want to wake him for pictures, so the photos I took with my Blackberry at clinic will have to suffice for today.  I'm hoping his deep slumber will last through the night; but I have a feeling he'll be ready to go at 1am (lucky me!).

Waiting for the nurse to administer the chemo med today;
he looks like he's sleeping in a La-Z-Boy.

Post-Vincristine.  I don't think he moved a muscle.

Visual Workouts

Grant had a great today...he was going non-stop for long bursts of time, examining everything within his reach.  Alexa gave him a plastic cup tonight (pink, of course), and it was like Disneyland for the little guy.  He must have played with that cup for at least 15 minutes straight.  Santa may have to hit Party City and get him an economy pack of Solo cups for Christmas - haha.  It's nice to see him developing his hand-eye coordination, and the nystagmus seemed to subside today, probably because he wasn't too tired.  His eyes also got a workout watching Alexa bounce on the trampoline tonight; his eyes were going up and down with every bounce she took.  You can see from the photo below that he was ready for a nap after Alexa's pre-dinner jump session. 

We're gearing up for Round #6 tomorrow - - it should be easier than normal since it's only a one-drug cocktail [easy for me to say since I'm not receiving it :)].  Keep Grant in your thoughts and prayers and hope he continues to tolerate these chemo sessions like a champ!

Grant posing as a news anchor.

Some one's ready for his evening nap - ready to pass out in the seat!

Mr. Alexa Hovannisian?

Since Damon had taken Wednesday and Thursday off while I was in LA, he unfortunately had to work today, so I had the opportunity to spend more quality time with the two kiddos.  After lunch, Alexa was asking me about some of my wedding photos, and I even pulled my boxed dress out of storage so that she could see it in its preserved state.  She loved the sparkles on the bodice of the dress (my favorite part too) and asked if she could wear the dress someday when she gets married.  I asked her if she had anyone in mind, and after I shot down her initial choice of Gabriella, she decided that she wanted to marry Grant.  She said (and I quote), "He's so handsome and cute and I already love him so much." 

Obviously I don't want her to marry her brother (lol), but it makes me so happy that she sees absolutely nothing wrong with her beloved baby brother.  Alexa mimics me talking to him (hence the 'Handsome' comment) and loves to play with him when he's on the floor.  She is really unfazed by the NG tube, the masks we wear when we're sick and the frequency of his doctors' appointments.  I hope we can keep it like this for a long time to come, as Alexa's been the one to provide the basis for our sense of normalcy (not to mention sanity) despite the circumstances.  :)

G's not too happy to be posing for pictures tonight - -
Alexa is another story, mugging for the camera.
(She is definitely Damon's daughter!)

Scoping out the monkey....and beating him in a stare-off.

Showing off his "guns."

A Night at the 'Bowling Alley'

 I absolutely love the weekends - - it's the time when Grant isn't at all lethargic from the chemo and is just a normal five-month-old baby.  Grant is really developing a great disposition and is a very easy baby.  Tonight he had a blast sitting in his bouncy seat next to the mock bowling alley I set up for Alexa and myself.  I'm not sure if he was laughing at my inability to knock down the plastic pins, but he was smiling and hollering the entire time.  Alexa could not stop giggling at some of the noises he was making and the pitch he was able to achieve.  I don't know if Alexa and I had a better time bowling or listening to 'Granty' talking up a storm. 

Regardless, I think had better start practicing my bowling; I want to make sure I'm not being heckled by my little guy :)

Having a blast today in the Bumbo seat.

 It looks like he's Armenian dancing;
Grant's ready for a party!

Gazing into his giraffe's eyes - I think it's love.

Bouncing to Rolling

It was nice to be back into the normal Friday routine - I went into the office for the morning and worked remotely in the afternoon while hanging out with Grant.  It's so fun to listen to him babble and see the things that solicit the most response from him....as soon as I say "Ahhhh", he opens his mouth for a kiss (I can even be across the room).  He's obviously too young to notice that I had been gone for two days, but Alexa was extremely happy to see me and didn't even complain that I picked her up from aftercare while the 'Friday movie' was playing.  My stock's rising! :)

Grant's nystagmus has changed into a different type - it's more of a rolling motion than the previous bouncing we saw.  The Oncologist has assured us it is simply a different form of nystagmus, not better nor worse, but it's definitely a much more obvious movement.  It's still too early to assess whether this will be lasting and how (if at all) it affects Grant's vision.  At moments, especially as the rolling becomes more marked when he's tired, it is a very blatant and unwelcome reminder of this disease.  We've been spoiled by how well Grant's responding to the treatment and can sometimes block the tumor out of our minds without any visible side effects.  Nevertheless, we just have to keep pushing forward and reminding ourselves that this tumor could be much worse than it is.  If nystagmus is the worst side effect, we're pretty dang lucky. 

Nystagmus can't detract from his big blue eyes -
he defnitely has the 'Niehoff' eyes.

Happy to have Mom home.
(You can tell who writes the blog and captions - lol)

Future veterinarian?  He's really studying the giraffe....

Home Again!

I came home from LA late tonight, and it's a nice feeling to be back home again.  I'm heading into the office pretty early tomorrow morning, but I hope I will get to see both kids awake...I missed the little munchkins.  The past two days were non-stop, so thankfully the time did fly by pretty quickly.  It sounds like I missed a pretty normal day; Damon reported Grant was very vocal today (cooing, giggling and squawking) and in a great mood.  I think even more exciting for both of us was that Grant's broviac dressing survived an entire day and did not need a change!  Phoenix Children's provides us with wonderful resources, so Damon spoke to a blood disorder nurse (she deals with a lot of broviac ports) who ordered us some dressing supplies that are more tailored for the broviac.  Let's hope these supplies help the dressings last longer than 24-hours!

I don't think Damon's cut out for a gig as a professional photographer, but I told him this photo will work for today's blog.  I have a feeling Grant wouldn't be too happy if I woke him at 11pm for a photo session :)


Filling out the monkey seat (& sporting an 80's collar).



A Night Away

Today is the first night I've spent away from Grant since the little guy's been born.  I flew to LA bright and early this morning for a jam-packed two days of finance conferences and meetings.  Thankfully I'm able to catch a late flight tomorrow night so that I don't have to be away from the kiddos (and Damon, of course ;) for too long.  I have to admit that I am looking forward to my first night of uninterrupted sleep in over five-months.

Daddy Damon did a great job of taking care of things at home today; he slides into the Mr. Mom role seamlessly.  Despite his fashionable mesh top, Grant's still having some issues with the dressing on his broviac.  Because changing it is a two-person job, Damon was able to solicit the assistance of the at-home nurses...whew!  We'll have to crank up the mL rate of his feedings to try to pack on the pounds so that he's a candidate for the internal, porta-cath soon.  These daily dressing changes are tough!

I'm already looking forward to coming home tomorrow.  The sleep will be nice, but I will trade it for spending time with the family any day :)


Grant's 'guilty' look - - those eyes are going to
make me cave every time he's in trouble!

A little bored without Mom around - - just kidding!
Probably tired from the wild house party with Dad tonight :)