Living in denial...the day before surgery

February 18th 2010
It was a brisk and blustery day in Manhattan but this trio from Upstate had big plans.....to put all worries aside and have an enjoyable, memory-filled day in the City.
With our city guide in hand and a fear of attempting a cab ride, we walked from RMDH to Central Park. 

This picture looks like William thought we were out of our minds for these plans (or maybe he felt silly being in NYC with socks on his hands as mittens)!

The Park was picturesque, serene...

 

except William missed much of the sightseeing.  After falling asleep on the ride, we devised a clever stroller cover with his beautifully handmade blanket and a couple toy links.

From Central Park, we ventured down 5th Avenue in search of lunch.  What our guide book failed to mention was that this very swanky area of NYC does not have toddler-friendly (or even "average-Joe welcoming" restaurants).  And so, we walked.... and walked in search of something....

We considering attempting street food, but William's expression made it clear he was not in favor of that idea.....he needed a full lunch feeding for himself.

After seeing a golden sign for "Trump Ice Cream Parlor" we figured we could have ice cream for lunch if it turned out to be the only thing we could afford at Trump Towers. 

We ended up enjoying a wonderful lunch at The Atrium in Trump Towers, surrounded by posh and classy-dressed professionals.  The location was perfect...we had a place to change William's diaper, I could nurse him and our pale, bald William was content his pajamas.  He even thoroughly enjoyed some green beans!

William had his first trip to FAO Schwarz!

~ lots of smiles ~

By the time we finished at the toy store, the reality that surgery was approaching in just a few more hours started to set in...big time.  I felt like I could have sprinted back to Ronald.  Let me tell you, we made it back much faster than the walk to 5th Ave!

We gave William a nice bath....he just played and played!

 

Our night of fasting from midnight on was what we expected - sleepless! Grammy had taken the first shift.  William was content snuggling with her in his swaddler. 

Fortunately, Daddy and Poppie's train arrived on time so Poppie took over William-entertainment from 1:45am until 5am (when Poppie had to be relieved to shower and get ready). William slept only 20 minutes on Poppie's shift but was kept generally content walking the halls of Ronald. We kept him out of sight of Mama the entire time until we were all ready to walk to the hospital.

We left for the hospital at 5:45am, but by then, our little trooper was getting h-u-n-g-r-y and definitely over-tired.

February 16 & 17, 2010

Grammy traveled to Manhattan with us for William's pre-op appointment.  After Fred had strategically packed the call FULL for our anticipated 10-14 day stay, we were had good weather for our trip into the Upper East Side... Shortly before our approach to the George Washington Bridge, we received a call from the social worker at Sloan saying there was no room for us at the Ronald McDonald House.  Just as I started to panic, she said the hospital would put us up in a hotel nearby until room became available at RMDH.  She gave me a hotel name and address... and by golly, mom and I found it!  We were so proud....that is until I entered the swanky lobby and the clerk told me we did not have reservations!

The social worker's timing couldn't have been better....she ended up calling me back before I could find her number in my contact's list.  Ronald had one room available!

We settled ourselves and all shared a valentine donut.  As silly as it is, this picture is so nostalgic of the days when William was a BIG eater!

William especially enjoyed nibbling on his beads at the Mardi Gras party in the cafeteria.  It was mom's first experience at the House's cafeteria.  You see so much heartache seeing all the sick kids.

Given our pre-op appointment wasn't until the afternoon, we had plenty of time to ventured around and give Grammy her first tour of our NYC stomping grounds.  We did some shopping along Lexington Ave...hitting a book store (to pick up a NYC visitor's guide, of course!), a children’s clothing boutique (fun to look, but beaucoup bucks, holy cow!) and a great toy shop. 

William was a good little explorer that day...all bundled up!  You can tell he really likes the busyness of the big city.

Watch-out Upper East Side....its Grammy & William!

We arrived at the 9th floor of Sloan right on time for out 1pm appointment.  William enjoyed giggling at the bubbling car in the fish aquarium, Grammy took in the sights of the "day hospital" and I stressed out with my many questions for the surgeon running ramped through my mind.

William had loads of blood work drawn, an exam by the NP and we proceeded with a meeting with the surgical NP, Angela.  She described in detail what to expect from the surgery.  She explained it is scheduled for 9am, so William would need to be there by 6:30am.  Nothing to eat or drink after midnight (yikes...how would we get through the night....this boy is accustom to nursing nearly all night long!).

The surgery was expected to last a minimum of 6-8 hours and possibly longer, even 10 hours. Angela then gave a very detailed account of what to expect on surgery day. She began a realistic description of how William will look after surgery. He will be brought by ambulance to the PICU at Presbyterian Hospital (across the street from Sloan), since there is no pediatric intensive care unit at Sloan. He will have severe swelling, be kept on a ventilator for 2-3 days all while being kept sedated with his eyes taped closed, he'd have a chest tube and likely an abdominal drain in place. Then there are all the monitors, IVs and an NG tube to decompress his stomach. It was clear the team certainly wanted families well-pepared for what to expect.

Enter Dr. LaQuaglia....and every changed instantly.  We went from a serious conversation to suddenly an intense, gut-wrenching one....
Dr LaQuaglia proceeded with a detailed account of the surgery he would perform. He reviewed William's CT and MRI scans, comparing the pre-and post-chemo images in a split screen. He pointed out areas of concern and described all the major veins and arteries involved as “swimming” in the tumor. There was a noted decrease in the size of William's tumor after the two rounds of chemo, however his tumor had finger-like protrusions still intertwined around vital organs, blood vessels and nerves, making William's a very complicated surgery. Dr. LaQuaglia also pointed out that the scans showed considerable calcification from shrunken tumor areas and a lot of inflammation, both of which complicate the surgery. He planned to put in an additional port line for blood transfusions.

Of course, we can't forget about the spot on William’s liver...after all, that was a driving force in the decision to do the resection at this time.  The area of concern was not on the surface of the liver but inside the it. If possible, he would plan to do a core needle biopsy; otherwise a wedge biopsy would be required.

Dr LaQuaglia reassured us that William’s tumor was not the largest he has seen.

Thank God...that is certainly not the contest you want your baby be first in...

...but he did reiterate that William's tumor was a very large, complicated mass in a small body. He repeatedly discussed the risks and used the term "life threatening surgery."

Honestly, this is a position no parent should have to be placed in to make such a decision on behalf of their child....it is just not right...  I felt numb every time I looked down at William, who by then had fallen asleep on my after nursing.

Dr. LaQuaglia kindly gave mom and I plenty of opportunities to ask questions, all of which he answered thoroughly. He stressed several times how involved William’s surgery would be, explaining that if the risk were to become too great, he would withdraw. In the end, the only question  I could ask was, "Are you sure he is ready for this?....Is this really the right time?  I mean, we are making this decision based on the information provided by you....is this really the right thing to do?"
Dr. LaQuaglia calmly nodded and quietly said, "I believe so."
Last but not least, they swabbed William’s nose to test for non-symptomatic flu due his runny nose, just as a final precaution.  We could leave no possible source of complication unturned.

We left the 1pm appointment at about 5:30, our heads spinning...spinning..... with all the information....

 

William looked on intently as Dr.LaQuaglia explained his pre and post-chemo changes from the CT scans. For lack of better words, Dr. LaQuaglia is like a rock star in the world on Neuroblastoma....almost "god-like."  Families travel from all over the world (no joke) to have him perform surgery on complicated tumors. 

Dr. LaQuaglia insisted on holding William, played with him and made a true effort to bond with his little patient.  With all respectfulness, this showed a lot as to his character, despite the intimidation factor and his well-earned bit of arrogance.  Truly awesome....

Valentine's Day 2010

Yes, you are reading the title correctly...Valentine's Day 2010. 
Truthfully, Valentine's Day has never been a particularly favorite holiday of mine (that is before having kids and taking on the challenge of serving heart-shaped foods for an entire day!).  Last Valentine's Day, we were days shy of William's resection surgery.  Looking back, I knew I was scared beyond belief, there was so much on the table... especially since the team at Sloan was concerned with cancer involvement in William's liver.

Out of a last-minute fear of the worst, I asked a neighbor, Jaime Hill (who has uniquely become a friend through this experience), if she could take a few pictures of William before his surgery.  She had done an amazing newborn shoot of William when he was 10 days old and family pictures in November, which turned out to be just a couple weeks prior to his diagnosis.

 As it turned out, Valentine's Day was the day that just happened to work for her.  She also recruited a friend of her's, Raine Dufrane to come and capture William. 

These photos, the meaning they hold to us and the thoughtfulness and generosity of these two talented women remain incredibly close to my heart a year later.

~ William, nearly 9 months old ~

photos by Jaime Hill

His hair was just starting to grow back after chemo.

 

Jaime graciously gave us a beautifully framed print of this photo.  Its hung in our entryway ever since.

~ photos by Raine Dufrane ~

Nicholas ~ 3 years 3 months

~ my most treasured ~

A boy, his Poppie and George

January 24, 2011
We are so fortunate to have Poppie retired now and willing to come to our house regularly help.  Through this time, we've been blessed with so many special moments, including this quiet Monday that Nicholas was home sick with the stomach bug. 

William adores this toy just as much as Nicholas did around the same age.

He knows exactly how to make George work and follows his every move so intently.

William and his Poppie are just inseperable on "Poppie-days!"

The Highlight of our Hospital Days...

I've always said that Nicholas is William's best medicine.  This picture is only proof of that. 

When we are hospitalized, Daddy and Nicholas come to visit around dinner time nearly everyday.  With each visit, Nicholas fills the room with his energy and plenty of stories of his school experiences, a laundry list of tv requests (including Danger Rangers, even if its in Spanish) and sharing his request for "a picnic dinner in William's bed."

This evening, Nicholas arrived wearing his goggles, spilling stories of his repair jobs at home.  When it was time for him to leave, he promptly put his goggles back on (yes, true Nicholas style!).  He and William played kissy face, with each taking turns of laying a good one on the other.

Talk about priceless!

Mommy & William

Some rare glimpses of Mommy and William time....


including Mommy's puffy, exhausted eyes....

but priceless, all the same.

Making Improvements

January 14, 2011

By this point in his hospitalization, William was experiencing periods of feeling better.  I treasure these pictures by Aunt Angela...especially this one.

The hospital cafeteria sells these giant rice crispy treats.  William not only enjoys them like his Mommy, but he insists on holding the ENTIRE treat. 

Don't even try to give him a smaller piece....he knows better!

Passing time with a little game of "Where is your....belly?"

This boy is well trained in the use of the hospital staff's Vocera communicators.

Yup, he knows he has to talk into it!

The Future of My Young Padawan

Every now and then you see something that you just know will be in your future.  That's exactly what I thought to myself after seeing this commercial. 

Follow this link....

http://www.youtube.com/watch?v=hN41zcXJjmk&feature=player_embedded


Agree?

....and thanks Daddy for the "Padawan" education!

The Gallium Study

January 13 & 14, 2011

A Gallium Scan was ordered to determine the source of William's infection and/or inflammation that would be causing such dramatic febrile episodes.  The test was days in the making, or shall I phrase it days in the decision-making process by all the docs involved in William's care. 

A Gallium Scan is a nuclear medicine test that uses a special camera to take pictures of specific tissues in the body.  For this test, William was injected with a radioactive isotope tracer (gallium-67) on Wednesday through his central line.  The tracer was absorbed in his body's tissues, bones, liver, intestines, organs and glands where inflammation or a buildup of white blood cells is present.  After waiting a day for the absorption to occur, William was placed under general anesthesia for two hours in the scan machine.  On Friday, after two days of absorption time, the test was repeated for another hour and a half of scanning.

Areas where the tracer builds up in higher-than-normal amounts show up as bright or "hot" spots in the pictures. The problem areas may be caused by infection, certain inflammatory diseases, or a tumor.

Being put under general anesthesia has become a routine part of William's life....unfortunately.  After many difficult and traumatic experiences of being put under and problems with waking, I've taken an advocacy role in telling the anesthesiologists how we run being put under.  We no longer to Versed...I refuse gas...we do it one way....and one way is the only acceptable way.  I go to the location where William is going to be put under (sometimes an OR, in this case right at the scan machine), I hold him, they inject him with Propofol, he falls asleep, I lay him down, give him a kiss, tell the team to take good care of him and quietly leave the room.  Its the only way that works for us....and I have to say, its been working well for months now.

Seeing all the "caution: radiation" signs on the doors of the room where I just left my baby puts the whole scenario into perspective.

Here is just one of the 287 images from William's Gallium Study.  I have to say, its rather freaky to see these images.  It reminds me of an alien laying there....not my beautiful son.  if only this entire experience was being perfromed on an alien...instead of our William.

In the end, the 3 1/2 hours of scanning under anesthesia, over a 2 day period was found to be negative/normal....and did not give us any more insight into a cause... except for the fact that William did not have an obvious infection or area of inflammation at the time of the scan. I only feel it necessary to share that this test was done after William had been on Zosyn (a broad-spectrum antibiotic) for a week and a half, Vancomycin (the infamous "drug of last resort") for 5 days, an antifungal for 3 days and over a week of anti-inflammatory meds.  I guess we will never know if the source of infection/inflammation had improved with the treatment prior to the test, if there was never a source of infection/inflammation or if the test was even a waste of radiation exposure, time under anesthesia, additional trauma to poor William, unnecessary cost to our insurance companies...and a whole lot of stress for all of us with care so deeply for William.

Sleeping beauty....with crazy hair!

January 13, 2011