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.