Superman and the Mermaid

Happy Halloween!

Well, Grant's 1st Halloween did not turn out at all as I had expected.  Months ago when Alexa first asked for a mermaid costume, I envisioned Grant having a coordinating lobster or fish outfit.  Given everything that has gone on in the past few weeks, we decided to scrap that plan (especially since he couldn't go out trick-or-treating) and go with the most appropriate costume for this little guy - - Superman :)  Unfortunately, Superman was pretty tired from yesterday's chemo, so his only visible superpower was the ability to sleep soundly.

Our plan to take Alexa trick-or-treating with friends also had to be squelched because she continues to have a fever...ugh.  However, that did not damper her desire to make sure she and Grant were dressed up to surprise Damon when he came home.  The mermaid was waiting at the door, posing and sashaying her hips in the gorgeous costume.  I will have to recreate the sibling photos after the holiday, because they were kept apart today due to her fever.

My mom deserves all of the credit for Alexa's custom-made costume, as this was her 'project' when she was here to help for four-weeks.  When Alexa told me she wanted to be a pink and purple mermaid, I knew there was only one person to call to accomodate this request.  Halloween could not come soon enough for Alexa, as she's been dying to wear this sparkly creation that is every little girl's dream.  NeNe came through big-time, and I have a feeling I will have to bribe her to take off this costume to go to school or run errands now that the 'wait until Halloween' ban is lifted.

Super-Grant!

Showing off his utility belt (& enjoying some NG-free time
before inserting the new tube).

The pink & purple mermaid...I don't know how we'll
top this costume in future years!

Yes, this mermaid has a 102-degree fever.
Not sure where she gets her energy...

Four Down...Six to Go

Grant completed his fourth round of chemo today, and he continued his normal pattern of handling the infusion of meds extremely well.  His hemoglobin levels were slightly lower than last week (explaining why he's been sleeping a bit more), but his Oncologist did not think the overall levels required a blood transfusion today.  A transfusion becomes more probable as the treatment continues, but G-Man (aka Grant the Champ) seems to be holding his own as we near the halfway mark of Phase I (10 rounds) of treatment.

Today's treatment was a little more hectic than normal.  As we were meeting with the doctor and waiting for the blood counts, I noticed my phone was buzzing steadily.  Thank goodness I decided to check my voicemail; the calls were from Alexa's school, advising that she had a 102-degree fever that was rising.  Oye.  Nana Hovey stayed with Grant as I drove back to North Scottsdale, picked up Alexa from school and drove back to Phoenix to pick up Grant and Nana.  I should have taken a picture, because I had both of my little munchkins in the back seat wearing their kiddie surgical masks.  I felt bad about not being there for Grant's infusion, but I think Alexa would have flipped out had anyone else come to get her.  Thankfully Grant didn't seem to notice nor mind, as he slept during the entire infusion.

Alexa did get into the pediatrician this afternoon, and it does appear she has some sort of virus.  Because she still has a fever, it's imperative that we keep the two kiddos separated.  I'm glad the layout of our house is conducive to this - - Alexa's taken over the master suite and Grant's on the other side of the house in his bedroom and in the living room.  This should be an interesting few days, as Alexa will be home from school; I guess we're 'lucky' Grant will be pretty sleepy and lethargic.

I'm a little disappointed Alexa and her BFF won't be able to wear their matching Armenia and Italia shirts to school tomorrow (it would have been cute), but at least it does take me off the hook for the pilaf....;)

Relaxing in the glider this evening - reminds me
of 'The 40 Year Old Virgin' movie promo. lol

Grant in his snazzy button-up (stunned by the flash).

Down for the count....

Packing on the Pounds (or Ounces)

As I'm sure many of you can tell by the pictures, the NG tube is doing it's job.  The 24/7 feeding schedule has helped Grant to (finally!) gain weight at a pretty good pace.  I weighed him this morning, and he's right on the cusp of 12 pounds.  I'm noticing the wight gain most in his face and thighs.  He's starting to fill out his clothes so much better, but I never thought we would get so many months of wear out of the 0-3 months size. 

Tomorrow is Round #4 of treatment, so if history repeats itself, he'll be a sleepy guy for the next few days.  While he rests off the chemo, I'll be busy preparing Armenian rice pilaf for Alexa's school.  They don't celebrate Halloween at Montessori, but rather have International Day at which the kids represent their nationality through clothing and at a potluck lunch.  It's a little too hard to represent the Dutch-Swiss-German side, so we're going with the 50% Armenian.  And yes, for those of you who know me well, I will be using real butter (not 'I Can't Believe It's Not Butter') for the pilaf ;)

Always wanting to stand...he's going to be an early walker.  Lucky us ;)

Getting ready for the 2013 baseball season.....





Play Time

Another perfect fall day in Arizona!  With temperatures in the 80's, we took advantage of the mild weather and spent the afternoon at the community playground.  While Alexa played in the sand and hung from the monkey bars, Grant was wide-awake and checking out the beautiful surroundings.  There will be a lot of outdoor field trips like this for Grant, because it's a great way to get him out of the house (without exposing him to too many germs) and burn off some of Alexa's boundless energy at the same time.

We have a busy week ahead of us: Home Health nurses tomorrow, Round #4 of Chemo on Tuesday and his 1st Halloween on Wednesday.  Let's hope the pattern of Grant handling the chemo well continues.....





Enjoying the fresh air with Nana Hovey.



Alexa decided to join Grant in his crib today - not really made for two kiddos :)

So entertained by his own feet....a cheap play toy!

The Great Outdoors

We had a nice Saturday at home today - the highlight being a walk around the neighborhood so Alexa could point out all of the neighbors' Halloween decorations to Nana Hovey and myself.  Given her enthusiasm, I think I will be doing a lot of shopping on November 1st (clearance prices!) to make sure we can compete with the neighbors' next year.  Grant enjoyed the walk as well, as his eyes were wide open and checking out the scenery the entire time.  I really miss being able to take Grant out to more places, but we just cannot take any chances with his compromised immune system.  I must admit I was smiling wistfully at a six-month old baby during Alexa's gymnastics class today, thinking that it would have been cute to see Grant interact with a fellow baby.  I know his time will come someday though....

While Nana Hovey put Grant through his workout regimen, I took advantage of the time to carve the pumpkin we bought last night.  Alexa wanted a 'Hello Kitty' Halloween design, and I'm happy to report that I was able to fulfill her wishes (only cutting myself two times - - I consider that a success).  'Hello Kitty' is now added to my pumpkin carving resume that includes Dora the Explorer, Mickey Mouse and the St. Louis Cardinals logo.  I'm glad to have the practice, because I have a feeling I will be carving two pumpkins next year to satisfy the requests of both Alexa and Grant. ;)

Ready for a safari...or hanging out on the back patio.

Relaxing to the sounds of the pool waterfall - -
looks like he needs a baby hammock. 

The Hello Kitty pumpkin...as requested by the Kelly family :)

Nana's Training Day

Today was Grandma Hovannisian's (Nana Hovey) 'first day on the job', so she learned all of the components of Grant's routine and care: physical therapy exercises, the process of filling the formula bag and remembering to take the pole connected to the NG tube whenever you move with Grant.  She got up to speed quickly, enabling Alexa and I to have a "girl's night out" with her BFF and mom at the pumpkin patch (AZ definition - - pumpkins sitting on bales of hay in a field surrounded by cacti..lol).  Alexa and I had a great time, and it gave Nana a lot of quality one-on-one time with Grant.  Apparently, it was a busy day for Grant and Nana, as they fell asleep together on the couch around 9pm tonight.

Grant was a little fussier than normal today, but I don't think it's necessarily chemo-related.  I think he's realized that if he is fussy, someone will come and hold him. Amazingly, the fussiness would disappear as soon as he was being held :)  Damon and I are in trouble if a four-month old has a leg up on us.....

Grant's looking good - - still has his hair too!

The Hovey kiddos - Alexa helped to pick out Grant's outfit tonight.

A Day with Dad

After juggling a vet appointment for Alstott and Alexa's flu shot appointment, I headed into the office, leaving Damon and Grant together for a "guys' day" - - the first since Grant was released from the hospital.  The report from Daddy Damon was good: they watched an episode of 'Modern Family', hung out on the patio and checked in on the progress of our plumber who has been fixing a water leak under our driveway (going on 2+ weeks - oye!).  Sounds like a pretty good day! 

Grant seems to be handling this round of chemo a little bit better than the last time; he's been a little more alert and sleeping less (but still a pretty significant chunk of the day).  It's pretty amazing what his 11-pound body is able to handle!

 Ready to play!

The bags under his eyes are getting smaller...
a great sign that chemo is wearing off!



Fall is here!  Sporting pants & socks for the first time.

The Normal Cycle

Now that Grant has completed his third round of chemo, we're starting to know what to expect in terms of side effects of the treatment.  The one that seems to affect Grant the most is fatigue - he probably has slept about 18 of the past 24 hours.  The fatigue is pretty evident on his face and in his eyes; the little guy actually has bags under his eyes.  However, none of this has not stopped him from cooing happily and flashing his signature grin when he his awake.

If history repeats itself, Grant will probably have at least two more sleepy days ahead.  If sleep is the worst side effect of the chemo, we'll gladly take that!

Sleepy but still smiling (and chewing the fingers!)

Back to rolling over on his own, even with the port in his chest.

Masked to go with Mom to pick up Alexa from school -
we can't take any chances with germs!

Three Down...Seven to Go

Grant had his third round of chemo today and took it like a champ.  He was awake for nearly half of the treatment, standing on my legs and cooing like absolutely nothing was happening.  During the time in which he slept, I kept myself entertained with some online shopping on Damon's iPad....this could be a very expensive 10-week period. 

He didn't seem as tired after this week's chemo - he was awake during the drive home, "talking" with me nearly the entire way.  We also spent a little bit of time outside late this afternoon enjoying the fabulous weather.  The meds did catch up to him though, as he conked out on the changing table tonight mid-diaper change.  We'll see if he sleeps through the night for the first time tonight - - I know both Damon and I are eagerly awaiting that day.

The infusion area, the open section with all of the chairs of patients receiving treatment, of the Cancer Center is an inspiring place.  It definitely takes you out of your comfort zone, but it's amazing what these kids are able to endure... Today Grant was sitting next to a little girl (probably 7-8 years old) who was sitting through her second session of a week long treatment.  Her meds were running over the span of six hours (translating to roughly an eight hour appointment), and she was doing this for five days straight.  Never once during the two+ hours that Grant & I were sitting next to her did she complain; the only negative thing I heard from her was about the hospital food they brought her for lunch.  Pretty amazing - I cannot complain about sitting in traffic or on an airplane again.

Today was our last day with NeNe; she flies home to St. Louis first thing in the morning.  I'm so fortunate to have such a wonderful and selfless mother who essentially uprooted her life for four-weeks to come and help however she could.  I'm looking forward to my mother-in-law (NaNa Hovey) coming, although she does have some big shoes to fill...I'm confident she will :)

Cracking up with NeNe this afternoon.



Still bright-eyed after chemo.



A picture of resiliency - "What NG tube & chemo?"





Ready for Round #3

The weather was perfect here in Arizona today, so Grant spent a lot of time outside in his bouncy seat underneath the awning.  NeNe even moved his workout outdoors today and used the patio couch as the mat.  It's too bad he has the broviac port, because Grant would love swimming - he's always been a huge fan of the bathtub.  For now, he'll have to stick with sponge baths and pack on enough pounds to have the surgery to install a porta-cath (internal port).

Tomorrow marks Round #3 of chemo, so we'll be returning to Phoenix Children's for our weekly visit.  Please keep us in your thoughts and prayers and hope that Grant handles this go-around as well as he has the first two.

I know there are a lot of San Francisco Giants fans who read the blog, so congratulations on taking the series.  The StL Cardinals just ran out of steam....oh well, there's always next year!

Getting better every day at sitting!

"Hands in the mouth" seems to be his pose of choice.



Lazy Sunday

This was another great weekend (with the exception of the outcome of tonight's StL Cardinals game); nothing eventful, just run-of-the-mill family life.  It makes life seem kind of normal again - gymnastics and swimming lessons for Alexa, football on tv, etc...  Today did have an added bonus, as some of our friends stopped by with an authentic Italian meal of baked pasta and meatballs - Damon's in heaven thanks to the Mantione family.  It was like a flashback to our days in New Jersey!

Grant's been alert and is grabbing at everything - he really seems like a typical four-month old.  He still has nystagmus (bouncing of the eyes), but that is the only visible sign of the tumor.  It will be interesting to see if this condition starts to dissipate as the treatment continues and pressure in his brain is relieved - we're all hoping there will be no lasting effect upon his vision.  The manner in which he's grabbing is giving us a lot of hope, as he appears to see the objects around him pretty well.  Fingers are crossed!

Such a happy little guy!

Damon at his favorite role....Daddy :)

Grant plays with Boo - a gift from one of our neighbors. 
I think he's enjoying a dog that's not sniffing nor licking for formula.

Sitting Pretty

Grant was back to his normal self today - yeah!  I bought Grant a new Bumbo chair yesterday, and he's definitely getting the hang of sitting.  He looks like a little old man when he's sitting in the Bumbo - tiny, but able to hold his own.

We did a weight check this morning, and Grant is now 11 lbs 4.5 oz.  Looks like the NG tube is helping him to gain the weight he needs.  He decided he needed a break from the tube today and pulled it out of his nose, so I was able to get a few pictures of the little guy without any tape nor tubes.  I'm looking forward to the day he doesn't need the NG tube - it was so nice to carry him for a few minutes without worrying about toting the drip bag and pole.

Striking a pose - - Grant the baby model.

Hair is starting to look a bit thinner....probably the chemo drugs.











Chemo Hangover - Day #3

Grant still seemed to be experiencing a chemo hangover today - he was a bit more tired than his normal self. I think this is one of the toughest parts about the treatment, because each time he returns to normal, it will be time for another round.  Nevertheless, he still had his signature smile for me when I came home from the office and kept trying to give me open-mouth kisses ;). 

The NG tube seems to be helping him to gain weight (although you can't tell from the ill-fitting 0-3 mos. onesie he sported in the pics below), so we'll have to do an official weigh-in tomorrow morning.

Relaxing in the monkey bouncy seat.

The sleepy eyes are a giveaway of the chemo hangover.

Slowly But Surely

Grant was tired again today, but not nearly as lethargic as yesterday.  He was awake for much longer periods today and resumed his normal exercise routine with his "personal trainer" NeNe.  It's really amazing to watch him when he's awake - - he pops out of sleep (no gradual wake-up period here) and starts smiling and babbling immediately. 

Today was the longest day I've spent in the office in weeks, and I have to admit I missed the little guy.  I've definitely been spoiled by the time I have been able to spend with him.  It's impossible to be in a bad mood when you're around him, and the illness has put an entirely new perspective on everything in our lives.  I don't know if Damon and I will ever be able to teach this little guy as much as he's taught us in his first four months of life.  :)

Grant's awake to check the score of the Cardinals-Giants game (Go Cards!)

Grant's best feature - the big, beautiful blue eyes.

Sleeping It Off

Grant was a very sleepy guy today, an expected side effect of yesterday's round of chemotherapy.  In the periods he was awake, he was his normal smiley self (just for a much shorter time period than normal).  It is funny to hear how much more vocal Grant has become within just the past few weeks - he ensures that everyone knows when he's awake by cooing and babbling (loudly).  Grant is going to give Alexa a run for her money in the attention-grabbing performances department - he's definitely not slipping into the wallflower 2nd child syndrome.  I have a feeling we'll have two kiddos fighting for center stage ;)

Damon & I have received a few questions about assessing the progress and effectiveness of the chemotherapy.  Unfortunately, Grant will not undergo another MRI until the completion of the 10-weeks of chemo (trust me - - I wish we could check daily!).  They'll do another MRI of his brain and spine at that time to make sure the chemo was effective in stopping the growth of the tumor (the goal of Phase I), and we won't have any idea of the effectiveness of treatment until then.  Only if something seems awry will they perform a scan sooner.  This cancer has already been and will continue to be an exercise in patience for all of us.....

Recovering from Round #2.

A little sleepier than normal....

Spending lots of quality time with NeNe.

Two Down...Eight to Go

Today was the second of ten chemo sessions that Grant will undergo during this first phase of treatment.  Because of his age and size, the Oncologist has to check his blood cells and counts before each planned treatment to ensure Grant's stable enough to undergo chemo.  Assuming each session goes as scheduled, the first round of chemo will be completed on December 11th.

Going to the outpatient center is a definite reminder of the disease, as we leave the bubble and privacy of our own home and are surrounded by other cancer patients receiving treatment.  I have to admit it was a bit overwhelming at first and hits you like a ton of bricks, but of course, all of the nurses fell in love with Grant and did whatever they could to make his treatment as comfortable as possible.  Apparently it worked, because Grant slept in my arms the entire time, clutching a giraffe blankie sent to him by a fellow cancer survivor (thank you, Summer!).

Grant continues to demonstrate his drive and perseverance.  The Oncologist was checking his head strength and control by pulling Grant to sit from a prone position.  As if he was trying to prove his toughness, Grant tried to stand up rather than simply sit like the doctor expected him to.  We all had to laugh about it - - that's my boy!!

Getting ready for Round #2, with Chemo Bear.

Nurses-in-Training

A nurse came to the house today to provide Damon and I with a tutorial for changing the dressing on Grant's broviac port.  Apparently Damon and I didn't look too petrified about the process, so we'll be changing it on our own (with supervision and guidance) next week.  As you can see from the pictures below, Damon's iPhone was there to capture the whole process.  Grant's a great patient, and he was falling asleep when we were doing the dressing change.  He seems to love wearing the little mask - it made him laugh when he had it on in the hospital and actually cried when we took it off him today.  Go figure :)

Grant also wanted to make sure I was familiar with the NG tube insertion process - I had to insert a new tube this morning when we changed the tape, and the little guy put his hand-eye coordination to work this afternoon and was able to pull out the tube.  Grant didn't seem to enjoy either of the two insertions.

Keep us in your thoughts and prayers tomorrow - - Grant goes for chemo round #2 in the morning!

"Dr. Damon" preps for the broviac dressing change - apparently the iPhone is sterile.

Our little masked man - ready for the new dressing.

The new dressing's complete - IronMan is ready to go!

Two-A-Days

I had no idea that Grandma Niehoff (NeNe) was such a rigorous personal trainer - she's been putting Grant through "two-a-days" of the exercises that were provided by the Physical Therapist at Phoenix Children's.  By the time he's done with each workout, poor Grant just passes out asleep on the mat.  Maybe we've found a new career for NeNe....

Tomorrow the nursing training will continue for Damon and myself.  A nurse will be coming to the house to provide a tutorial on dressing changes for Grant's broviac pump.  This is the nerve-racking one, as when the dressing's off, there's a direct line to the blood vessels in his chest.  Yikes - makes the NG tube insertion seem like a cakewalk.

"Brotherly" love (sort of....)

His fingers have become his new pacifier.

Fan Club

We're enjoying a relaxing weekend at home and getting ourselves ready for the next round of chemo on Tuesday.  Papa Niehoff (grandpa) flew home to St. Louis this morning, but thankfully my mom (NeNe) will be staying for awhile longer.  Alexa's in heaven with the attention she's receiving - NeNe took her swimming today despite the (relatively) cooler temps (80's in AZ)....there's no way her mom would have done that :) 

Grant's still his normal self, which is very refreshing to see; he's definitely getting more vocal for attention.  He's discovering mirrors and really seems to like the baby in the reflection.  Tonight he held a conversation with himself in the mirror for a few minutes, babbling up a storm.

Bright-eyed and ready to go.

A mutual fan club.

A very proud big sister.



Waiting for the day Grant has solid foods......