Friday, July 20, 2012

Surgery-Another tough one behind us

G had her surgery today.  We drove the motorhome to Stanford last night and stayed in the parking lot so we would be ready to go.  They wanted us to be at the surgery center at 6:15 this morning.  Of course we arrived at 6:15 like we were told and then sat in the waiting room for 30 minutes waiting for them to get their shit together.  I asked them how on earth they could be backed up at 6:15 in the morning but was met with blank stares and lame excuses.  That is starting, ha starting, continuing to drive me nuts.  Mindless policies and protocols that make no sense and cause undo stress to my kid and my family.  My new battle has begun.  We were taken to the pre-op holding area where we got to see the extent of the damage from the great flood of 2012.  It is actually pretty impressive.  None of the imaging machines are back up.  The hospital is trying to do everything with portables and farming MRI's and CT's out to other facilities.  Let's hope they get things back on track before G needs another image.
There was a tangible heaviness in the air between Kris and G and I.  I think Kris and I were worried and G just feeds off us.  I know that she was scared but she was still playful and tried to be a good patient when they accessed her port.  There was a steady stream of doctors that filed into our bed area to make sure we knew what the procedure was going to be and if we had any questions.  I am very impressed with the doctors who were part of the procedure today.  The pediatric gynecologist was the original doctor who diagnosed G and did the biopsies back in March.  I want to cringe every time I see her because she was the one who initially changed my world so drastically four months ago but I realize that she is a physician and she did her job and did it well.  The radiation oncologist who will be overseeing the 5 1/2 weeks of radiation that G will undergo next month was there as well.  She is also a very impressive individual who has been treating kids for a very long time and does not mess around.  We had a meeting with her last week after the cancelation of the last surgery and I was so pissed off and just wanted to unload on somebody that worked at that hospital.  She walked in the room and her first words were "well you must feel pretty jerked around right now".  It was funny how that short phrase just totally took the negative wind out of my sails.  I no longer wanted to fight them, I wanted to get back to the fight at hand.  Anyway, I digress.
The anesthesiologist, I was not impressed with.  On a side note.  All of the anesthesiologists that we have dealt with have been fantastic.  I see them as the firemen of the doctor world.  Kind of goofy and fun but still serious and competent.  This lady was cold, patronizing and impatient.  She had an intern who was running around nervously and pushed 2 mg of Versed into G what I thought to be a little too quickly and she got really loopy really fast.  She then told us to give G a kiss they were going to go.  Well, I don't think she got the memo from the other doctors/nurses/assistants/schedulers who have pissed off Kris and I because it did not work out the way she anticipated.  I told her I would accompany them to the OR and she argued.  I did not argue, I just kept telling her I was going and that was that.  Needless to say, I went.  They had to wait about 30 seconds for me to get the gown and hat on and then we went.  To all the parents out there, if you never have to watch while total strangers put your child to sleep count yourself as lucky.  It is not a pleasant experience.  About an hour later the radiation oncologist and the gynecologist came out of the OR to tell us that the procedure had gone well and they were just finishing up.  Everything was able to be done laparoscopically.  They were able to move both of her ovaries out the radiation field which was a pleasant surprise because they kind of thought that the right one would either be difficult or immovable.  They were worried that it would be connected to the lymph node and would require too much work to move.  Because they were both separate, they did not need to biopsy the lymph node.  They will just radiate it.  The pelvic exam showed that there is still a small part of the tumor left and some of the polyps that they had hoped would be gone by now.  We are not too sure what to expect at this time, they did biopsies of them and we should know by next week what it all means.
G woke up easily from her anesthesia but slept quite a while.  About 2:00 she was admitted to a room on the 3rd floor which is not a cancer unit.  It is our first time being at Packard without being in a cancer room.  Kris and I both felt a little out of place.  The staff was great and the surgeon came up around 6:00 to check on her and us.  He answered some of our questions and talked about G going home tonight but we concluded that she would be more comfortable in the hospital where they can keep an eye on her and better control her pain.  She has three holes in her from the surgery.  A small "stab wound"  on both flank and they also made an incision in her belly button.  She was hurting a little but was not really complaining.  Kris stayed with her in the hospital tonight and I got to come home to be with my parents and Bridgey.  We will pick her up in the morning tomorrow.
Next thursday, we meet with the oncologist to review her scans and get the rest of the plan for her treatment.  She is scheduled for an overnight chemo next Friday and her planning is currently scheduled to the following Monday but I am skeptical that she will feel up to it after this surgery and then the heavy dose of chemo.  That is an awful lot to ask of a little girl over a three week time period.  If that all goes as currently scheduled, she could be starting radiation as early as August 6th.
Damn I'm exhausted just thinking about that schedule.  I guess all I can say is, "see you in September"

Team G


As I sit and recap all of the events over the last couple of days, I'm already exhausted.  But I wanted to write about it to share with all of you that are following our story.  I'll try to share my experience the best I can without repeating what Adam already shared.   
Thursday was spent trying to make a solid plan for that night and the following day.  Grandma and Grandpa were on their way up to help out with Bridget so Adam and I could focus on G.  We initially thought that we would take both girls in the RV, drive to the parking lot and barbeque dinner but as things changed with Bridgy taking a longer nap, we had to adjust our schedule.  I felt so bad leaving Bridget behind because the look on her little face was one of alarm that she wasn't coming with us.  Bridget has been so amazing through this whole journey and has been so understanding in her own 2 year old way.  I convinced her that we would have more trips in the RV and that we would see her tomorrow so on we went.  It helps that she loves hanging out with Grandma as well.  Adam mentioned the trip up to Stanford in the RV and the heaviness in the air.  G fell asleep to a movie on the way up and once she falls asleep in the early evening, it's difficult to get her up, bathed and ready for bed.  We had to do some serious convincing for her to take a shower with the antibacterial soap the doctors requested the night before surgery.  But as the little trooper she is, she understood and complied.  

I'm not an early riser but getting up on Friday was a piece of cake.  We drove to the hospital, grabbed G and went to check in.  Both my girls are no early risers either and G wasn't happy about being ripped from her bed at 6 in the morning.  Adam and I waited with G in the pre-op area seeing some familiar faces and trying to discuss if we had a pleasant or not so pleasant run in with each of them.  When you've been put through the ringer and your one focus is to do whatever is best for your little girl, its difficult to remember everyone and every experience you've had.  We got to see the majority of the doctors that would be involved in Gabriella's case; Dr. Bruzoni, the main attending surgeon, Dr. Hillard, the pediatric gynecologist, Dr. Donaldson, the radiologist oncologist, and the entourage of eager residents wanting to help and learn.  It wasn't until after Adam came back from the OR that we realized what an unusual and special procedure this was.  There were about 20 chairs all lined up in the operating room and two huge monitors overhead so everyone could observe G's procedure.  I guess it isn't every day that they plant gold seeds (yes I said gold), place titanium clips and relocate the ovaries of a 4 year old. 

After accompanying G to the OR, Adam came back into the family surgery waiting area, one that we are all too familiar with, with pain in his eyes.  I knew how difficult it was to watch your child as you hand her off to a room full of doctors gowned in blue scrubs, gloves, glasses and caps as the grips of anesthesia take her mind to a more serene place while her body stays to endure the battle wounds.  No words needed to be exchanged.  Just being there for each other was enough.  We were soon accompanied by Nana and Uncle Ronnie and Auntie Mel anxiously awaiting any news from the surgical team.  

About an hour after surgery started, Dr. Hillard and Dr. Donaldson came in to talk with us about their findings.  We all crammed into the small consultation room and they proceeded to explain what they had seen and done to our little girl.  We sat again as we have been doing for every meeting with fervent anticipation and listened to every word they were telling us.  I tried to ask every question that I could think of without interrupting what the doctors were saying but at the same time trying not to forget the questions in my mind.  I listened intently, as a mom, as a nurse and trying to keep myself composed.  But my emotions were outrun by my composure as I thought about what my little girl has to endure, not just today but past and future.  I couldn't stop the tears from pouring out of my eyes.  These two incredible doctors sat with us, not just as doctors but as wonderfully caring individuals who Adam and I literally handed our trust too and encouraged us with their silent confidence that they would take care of our little girl.  

Another hour or so went by.  I can't recall because at those moments, time doesn't really matter.  It seems to just stand still.  Dr. Bruzoni was finished with his part of the procedure and came in to talk with us.  With him, he carried pictures.  Fabulous, I love pictures and seeing an actual visual of what we are talking about here.  He happily reported that they were able to move both ovaries....BOTH ovaries!  I think I might have smiled at that point.  He showed us her little ovaries, even smaller uterus and the fallopian tubes.  I don't know, maybe its just me but I'm thoroughly amazed by the human body.  It has always fascinated me.  Maybe I should have gone on to be a surgeon.  Ok, ok, I'm dreaming now.  He showed us again where the clips were placed and where the radiation would be focused.  They also took samples of residual left over from the primary tumor site.  These will be tested to see if there are any active cancer cells, which the PET confirmed they're was not.  

Recovery was spent on the third floor this visit.   Not as much freedom as we are used to in the 1 North area but it was only for a night.  The nurses were really great and once we were settled, we had a short visit with Grandma, Grandpa, Bridget, Auntie B, Nana and Caiden.  G was excited to see everyone but her pain would remind her she couldn't get wild with her sister and cousin.  She found the little stitches coming from her belly and notices a little blood there which lead to the question, "Mommy, why did they do that to my belly button".  It wasn't just once, but a few times.  Each time I told her "they wanted to move your ovaries".  She asked why and I told her that your ovaries will help her grow up a little later  She's                                                                                           precocious                                                                                                                           d                                                              fffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffff                                 

Ok, so I fell asleep last night typing this and I thought it was pretty funny so I left it.  
As I was saying, Gabriella kept asking about her belly.  I always told myself that I would be honest with my girls as they were growing up; explaining as much as I knew they were ready to absorb and without going into details that they couldn't quite comprehend yet.  G is so very precocious in her development and language so I wasn't worried about telling her what I thought she'd understand.  If she had more questions, I knew she'd ask.  
Friday night sleep was more descent than I expected.  G took her baby vicodin around 9 and seemed to be comfortable.  I stayed the first few hours on the little couch made into a bed but ended up scrunched in between G and the railing of her hospital bed.  Every time she woke, she reached her hand out to make sure I was still there.  Whatever I could do to make her more comfortable, I'll do.  She's such a cuddle bug these days.  Maybe because that's the one thing that makes her so comfortable when all else is discomforting; cuddling up to mom and dad.  She didn't want to take her 3am dose of vicodin and I let her skip it to sleep.  I should have known better because she woke up uncomfortable at 7am.  After another dose, her pain under control and a lot of pestering, we finally got discharged around 12.  Since traffic was so bad on highway 17, we decided to drive the RV through the scenic route over 92 and down highway 1.  We stopped to see some harbor seals and had lunch in Davenport.  Of course, the concern to get G home to rest, worrying about how much she's peeing and drinking, if she's washing her hands enough, if she's too cold, if her belly is hurting and she wasn't telling me, all made it a little harder to just enjoy the drive.  So I had an expresso-tini with my mom-in-law at lunch.  
Since G has been home, she has hardly complained about anything.  She was walking around a little hunched over the first couple of days but is in such good spirits.  Bridget is, as always, happy to have everyone home.
I often find myself caught in between two worlds; one is the playfulness of my 2 and 4 year olds world and the other, the gravity of the cancer world.  The moments I enjoy seeing them playing and having a blast together are cut short by the thoughts that only a parent of a cancer child would realize and truly understand.  This cancer world, I wish that no parent would have to experience.  

G wanted to listen to her heart with the froggy "testhescope". 

Bridgy giving G a kiss as she takes a nap on Nana during her morphine induced sleep.
Grandma and Grandpa putting the toys together.

A box of headbands, hats and caps sent by "Abigail's Bling for Balding Beauties"
so G can pass them out at the hospital!  More to come on that! 

On our way out!

A quick stop to see the harbor seals.

Showing off her new headband from "Balding Beauties"!  Thanks so much!!

My sassy girl!

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