Tuesday, July 31, 2012

Monday the 30th- Radiation Planning

We are currently sitting in post-op listening to Gabriella's heartbeat on the EKG monitor waiting for her to wake up from general anesthesia.  Today was her planning session for radiation, which is scheduled to start next Monday.  They built a mold of her so she will be able to be placed in the same position 27 times while she undergoes her daily radiation doses.  It was a pretty easy day really.  We got her up around 7:00 and whisked her out the door and into the car.  Ronnie and Mel came to be with Bridget for the day so she could sleep in.  It all went seamlessly.  I don't think it will ever be any easier to watch her go under general anesthesia.  She is waking up now and we should be on our way home shortly.  They initially told us it would be at least a couple of hours but they were done in 45 minutes.  It gives me confidence that the radiation oncologist is on her game.  We can't wait to get this part of the treatment over with.  Another milestone.

Team G


Today went about as seamlessly as it possibly could have as Adam stated above.  Things got done on time and easily.  We were planning for at least a full day but it ended up being about 4 1/2 hours.  Believe me, this is a short day when you include a procedure and anesthesia.  G was amazing waking up and soon after she was drinking he coconut milk and we were ready to go.

It's funny how this cancer life invaded our world so viciously but is becoming a part of our "normal" life.  We just do because we have to.  When you have to wake up thinking about what medicines are due that day, wondering if the hospital will be ready for you or if they will be faced with some kind of emergency that will set everyone back, not being sure if you will be able to come home that night or if plans need to be made for an overnight, the constant scouring the room for cough's, sneezes, and colds just to make sure your kid won't walk in the same line of air the sick guy just went through, constantly wiping everything down and making sure little hands are sanitized then finishing the day with sorting through endless insurance papers, researching online about pediatric cancer funding and being shocked at what is not available, trying to figure out the best way to make a difference for all of these kids fighting cancer, making lunches for the hospital the next day and ending the evening with giving my child a shot while she sleeps, and checking her later in the night she for fevers.  It doesn't stop there.  During the night, there is a constant worry that she will come down with a fever and constant "planning" on what to do if she does.  When you wake up the next morning, it starts all over again.  And it's automatic.  There are moments of panic after we realize we've just let our guard down by a missed hand cleaning or swapping cups only to be fervently back "on guard".  It is still odd to me to say "my daughter has cancer".  When I hear myself say those words, I often shutter.  Is this true?  Can this be?  It's still mind-blowing.  I have to stop and collect my emotions before I can continue.

There is something to be said about living in the moment.  Yes, we all need to plan for future necessities but the incessant worry...is it really more important than enjoying our lives and our children right here, right now?

Sunday, July 29, 2012

Just Passed Week 16!!!

Updates for July 26th, 27th and 28th

I realize that its been over a week since we posted!  (I've been writing this for the last couple of nights but keep falling asleep before I finish.) We had a great beginning of the week with a couple of short trips to the boardwalk for cotton candy and a couple of rides.  The end of the week has been pretty draining with the doctors meeting and another round of the VAC at El Camino.  These days are very draining and I can only say I've been more physically and emotionally drained the last few evenings.  It was a debate over writing a post (which I really wanted to do) or getting some rest.  This post has actually been written over the course of about 3 days.

July 26th

Bridget, Gabriella and I left to pick Adam up at work so we could head to the meeting with Dr. Marina and Dr. Aftandillian.  Luckily, Mark Franz was gracious enough to cover for Adam so we could steal him away to go to the hospital.  Go figure...they get a fire in the time that we were gone.  I'm sure there will be more.  We met with our doctors to discuss the recent surgery, their findings, pathology results, and the next part of the plan.

Gabriella has been recovering like a champ.  As always, G rarely has any complaints.  We stopped giving her the pain meds on Monday morning because she had no complaints about any discomfort.  She was back acting like her normal fun self and kept asking every day if we could go to the boardwalk.  The boardwalk was so much fun and I'm surprised at how clean they have kept it.  I was armed with wipes, disinfectant spray and hand gel and constantly scouring the scene for coughs, sneezes and runny noses.  Her counts are decent but as we know, that can change in a moment.

First discussion on the agenda was the pathology report.  The report showed that there are "mature rhabdo cells" in the primary tumor site, where they thought the tumor was almost gone.  I know, sounds bad when they say mature cancer cells but it's actually a good thing.  From how I understand, they say there are a few stages to these cancer cells.  Basically, there are "immature" cancer cells, which are bad and "mature" cancer cells that are trying to progress to normal cells, which is good.  These mature cells are working their way to normal cells and of course, the bulk of the tumor is gone.

Going back to the meeting with Dr. Donaldson and Dr. Hillard the day of the surgery, we were trying to figure out the apprehension we noticed about the doctors still seeing tumor on exam.  We were told "the tumor has significantly shrunk if not gone" but the lymph had not shrunken as much AND there was some "unknown fluid appearing substance" in place of the primary tumor.  This was one of the reasons they had to examine her further...to see what this "fluid" was that showed up on imaging.  This didn't make much sense that the tumor had gone but the lymph was still enlarged.  It had shrunk but not as much in relation to the primary tumor.   Apparently the images weren't exactly accurate (how settling) and when they were expecting to see no tumor but saw tumor, it seems they were concerned.  Dr. Marina said looking back, they should have expected to see tumor because of the lymph still being enlarged.  They were being overly optimistic about the shrinkage.  Plus this was after only 2 three drug chemo treatments and we still have 12 more to go plus the weekly treatments and the 28 days of radiation.  I'm encouraged as to how much the tumor shrank with just 2 treatments and reassured that we are headed very much in the right direction.

Once G is done with her radiation, we will go through re-staging at about week 30 to see where we are at that point and continue as necessary.  This will include a chest CT, MRI and another exam under anesthesia.  But, we'll cross that bridge when we get to it.

Dr. Aftandillian gave me a calendar which listed the future dates of treatments for the next few months. Awesome.  I love calendars, planning and visualizing the schedule.  Of course, things could and probably will but at least it gives us a tentative plan.

At the end of our meeting, we went to visit the oncology unit and meet a little girl who is fighting cancer as well.  My heart breaks to see these little brave warriors battling such an awful disease.  It's so unfair.  They shouldn't have to face a situation where they have to fight for their lives at such a tender young age.  On the way home, I cried.  Even though our meeting was positive, I cried for the little children who face such a challenge in their lives.  It's hard to not let your children see you cry but I hid my tears from my little girls in hopes that they wouldn't see me.  I didn't want to have to explain why I was sad about cancer.  I don't want to associate life ending with cancer and scare my little girl.  It's not going to happen to her.   It lights my fire and makes me want to work harder to do something about this....awareness, funding research, helping families who have to fight pediatric cancer.

July 27th

Today was a pack up for the hospital day and get G to El Camino.  Adam was on his way home from work and volunteered to stay with G that night, take off a few more hours at work on Saturday and hope that somewhere in between he can get some rest.  In hind site, I should have stayed with her so he could rest.  It's hit or miss at the firehouse.  Sometimes they can be up all night and sometimes sleep all night.  Nana came down to help me with Bridget and spend some time together.

We got to the hospital, got accessed, got settled, hydrated and she had her chemo about 4:30pm.  One of the nurses, Angela, taught G the princess count and she's been doing it ever since.  Instead of 1-2-3, she counts her favorite princesses...Snow White, Cinderella and Bell.  G did amazing with her chemo.  She didn't get nauseated, ate pretty well and painted all over her feet, hands, legs, etc.  At one point, she was using her IV tubing as a jump rope (hmmm...daddy was there) and it cracked.  Blood started flowing out but Adam managed to clamp it off and get a nurse to change the tubing. Whew.  Lucky they caught it in time!

G fell asleep watching the opening ceremony of the Olympics.  The next morning, or afternoon, we were discharged to go home!  I'll never get tired of the phrase "Going home"!!  A place for us to rest, recharge and heal is "home".  I have never appreciated it as much as I do since this all began.  But with the three drug chemo comes more shots of the Neupogen (or GCSF).  Ugg.  I hate these shots. Last time, we decided that since Gabriella got so incredibly anxious about getting a shot that burned and stung like a bee sting, we would do it right after she fell asleep.  It's a horrible feeling to know you have to go into your daughters room and basically sneak attack to give her a shot...and inflict pain.  But, since it caused her so much anguish during the day, we thought doing it during her "deep sleep" period would be best.  She actually doesn't remember the shot in the morning and at some point during the day says, "I don't have to have a shot today".  At least that makes it bearable.


I know this blog is mostly about G but I just wanted to talk about her little sister, Bridget and the little warrior she has been throughout this journey.  She has been absolutely amazing and probably one of Gabriella's biggest supporters.  During the weekends, G gets antibiotics to fight off an unwanted pneumonia.  Bridget is always right there to help give G the antibiotics and help cheer her on as she takes them.  She runs around the house chanting "Team G, Team G" in her 2 year old voice.  The other week when we were making cookies with Nick and Lucas (our favorite neighbors), Bridget got up on the table and started busting a move!  She was so hilarious and we were all cracking up!  Bridgy is the little glue that keeps us all entertained, laughing and on our toes.  She is truly a warrior princess fighter in the help against G's cancer!!  I just love this little girl!!

This Monday we will be back at the hospital for Radiation Treatment Planning.  G will go under yet again for this.  We will be waiting patiently for our little one to come back to us from the grips of an anesthesia induced sleep yet again.  She is tough, she is a fighter and will come out of this with flying colors.


The girls with their cotton candy.
Bridgy is going after it with zealous!

On the carousel ride.

With their fancy Bling from Balding Beauties!

Motorboat time!

Playing in the garden terrace at El Camino.  

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!

Wednesday, July 18, 2012

Thank you Firefighters!

This morning was spent getting up, getting going with our coconut and coffee and making our way to the hospital.  G had her meeting today for her weekly vincristine.  It's been a couple of weeks since she's had chemo due to the surgery being scheduled.  Since our delay, the doctors wanted to get another dose of chemo in her while we waited for surgery.  We brought our cookies and passed them out to secretaries, medical assistance, nurses, doctors and a couple of other patients.  Everyone was so grateful for the special treat G had made.  It's amazing what little joy comes from giving something fun and colorful on both sides.
G and I were in and out in an hour, thanks to the speed pod and got to go have a little lunch.  She was hooked on watching her latest movie "UP" since it was playing on the TV in the waiting room and we were able to pull it up on YouTube.
After lunch, we made our way back home.  G was getting a little sleepy in the car and was able to fall asleep before we hit 17.  For those who know highway 17, you know how easy it is to get nauseated driving over it.  The road with its twists and turns is not a pleasant one especially if you are in the back seat.  Its the one place Gabriella often gets nauseated with our drive back and forth to Stanford.  Add chemotherapy and surgery drugs to the mix and you have a mess on your hands.

I was doing my best to drive slowly and carefully.  It helped this morning but after pizza and lemonade, she woke up right out of her sleep and gave me the moan with her hand covering her mouth.  Before I even got a chance to look for a safe spot to pull over or safely grab a barf bag from behind the seat, she had thrown up all over.  I was still scanning for a place to pull over and saw the sign for Redwood Estates.  Whew, Adam's old fire station.  Gabriella threw up a couple more times before we pulled in to the parking lot at the firehouse.  There was throw up everywhere...in her hair (what little she has), arms, car seat, seatbelt and now on me.  I didn't really care, I just wanted to get her out of the car and the throw up off her.   After pulling of her jacket and dress only to leave her in her capri's, one of the firefighters came out.  I asked if we could use the bathroom and told him I was Adam's wife.  He showed me where it was so I could take G in and wash her off.  When we came out, they all asked what we needed and I asked for a towel.  Shawn and Mike went to grab some along with the all-purpose spray while Chip got G some water.  I was fully prepared to clean the car out myself but they were already out there getting all the throw up off the seatbelt, car seat and the seat.   Needless to say, I was overwhelmed with appreciation and gratefulness.  I think I was almost speechless when Chip asked if I wanted her clothes washed out.  Really?  You'd do that for me... take my daughters barfy clothes and wash them out?  Wow, these guys really are amazing!  Not only did they stop what they were doing to help us, but they went above and beyond for us.  Shawn Ohara, Mike Hall, and Chip Stanton...I thank you so very much for helping us.  I won't ever forget the people who we've met along the way that have so graciously helped us and of course our friends and family for all your love and support.

On another note, Treatment Planning will be scheduled for July 30th.  This includes another CT scan under anesthesia and a mold being made for her radiation treatments.  Her three drug overnight chemo (vincristine, cyclophospamide and dactinomycin) will be scheduled for July 27th.

"Just keep swimming, just keep swimming".

Monday, July 16, 2012

Radiologist Meeting- July 16th

Thoughts on Sunday Eve:

As the day gets closer, yet again, where we have to endure Gabriella's little body being flooded with medication to make her sleep, meds for fighting infection, meds for pain, being poked and prodded with needles for stitches, tissue being taken for biopsies, and invasive markers to be clipped to her little body, I find myself thinking about the first few months of both pregnancies.  When people would ask me, do you want a boy or a girl...as if I even had the ability to choose, I would always tell them, "I just want a healthy baby".  (I did secretly want girls but don't tell Adam ;-))...a healthy baby.  On the day of March 16th, 2012 I was just trying to breathe as we walked into the Bass Center for Childhood Cancer, that one want...the only want for my little girl was taken away from me.  Not only was it taken, it was violently ripped from right underneath me.

Meeting with Dr. Donaldson, our radiologist and her team.

We woke up today to get ready for our meeting with the Radiologist, Dr. Donaldson.  It was difficult to get going this morning just because it was Monday and we knew that we would have a lot of information thrown at us today, and the days to follow.  After the weekends, it's back to the grindstone.  I've never been so aware of Mondays till this whole ordeal started.  Due to our nursing and firefighter schedule, weekends were always the days Adam was off.  We always tried to plan our trips during the week so we wouldn't have to run into the weekend crowds.  That started to change as Gabriella started preschool and now, we are even more aware when Mondays come around.  Today the weather was a bit dreary, kind of like my mood.  But as we got started and got the girls ready, we made our way up to Stanford.

As soon as we checked in, they were ready to bring us back.  Gabriella got on the scale and weighed 36lbs!!  She has been steadily climbing from around 33-34lbs in May back to her original start weight at 36.6lbs.  It is like heaven to see her eating so much and having it pay off.  Adam and I give each other a reassuring glance when we see her putting away chicken nuggets with ketchup, broccoli, and mac n cheese.

We meet with a very nice young medical student.  He was just there to get the basics.  As we get used to working with the different levels of medical personal, we realize what they are good at and give them "jobs".  I asked to see the report and the actual images of the MRI scan from May 18th.  The initial scan of this enormous tumor in Gabriella's pelvis has been a burning image in my head.  I wanted to replace it with the newest image.  The tumor and the right lymph has shrunk as they explained but the right lymph is not responding as quickly as the primary tumor site.  At this point, the resident came in to introduce himself and confirm more information about Gabriella.  With my questions fresh in my mind and more coming as we got started, I was eager to ask away and had my notepad ready.  But, I had to wait a little longer for Dr. Donaldson, who has been an active member of the rhabdomyosarcoma treatment plan since 1972.  When she came in the room, she was like a beam of light to me.  I felt very comfortable with her and believe that she will do what it takes to cure G.  She was also so attentive to Gabriella, Bridget and to us, apologized for the flood incident and acknowledged that we must feel "jerked around".  It was reassuring to know our team of doctors understands how we are feeling and that they are feeling the same way.  Some things are just out of our control.

Our meeting with Bridget and Gabriella, me and Adam, and four doctors crammed into a little examination room was in progress.  Gabriella was busy playing Mickey Mouse on my iPad while Bridget played the Easy Bake game on my iPhone.  For over an hour and a half, they were completely cooperative.  They were amazing.  It's like they both new this was something really important and mommy and daddy had to pay really close attention.  We were hanging on every word Dr. Donaldson was saying, trying to remember all the questions we had on our mind, taking notes and reading back what we were hearing.  It was like being in school again but I would give my own life for the reward at the end.

I again asked about the lymph being so big in relation to the primary tumor site.  Doesn't the cancer spread from the primary tumor site to the lymphs at a later stage?  Is this common in rhabdo for the lymph to become as large as it was?   They aren't quite sure why the right lymph became so large while the primary site was only slightly larger, why its not responding as quickly, and were perplexed about it as well.  What they did say was that ultimately the images do not predict the final outcomes.  She said,
"Failure is not an option.  We won't even discuss it."  What she did say that really stood out to me was the likelihood of curing my little girl is 90%....90%.

As I try to sit here and shuffle through the notes I took today, I'm trying to fend of the feeling of being totally overwhelmed.  I'm already emotionally and physically exhausted.  There was so much information today.  I feel confident but at the same time very scared.  Scared for my little girl who has to go through all of this.  She has hardly complained about anything through this whole experience and she is still as sweet as ever.

So here's the plan:
We will have the weekley vincristine this Wednesday, the 18th.
The surgery is confirmed for this Friday, July 20th.
The following week Gabriella will probably have the three drug overnight chemo Thursday or Friday, the 26th or 27th.
We will probably have another meeting with Dr. Marina and Dr. Aftandilian the last week of July.
We will have another meeting with Dr. Donaldson for Treatment Planning probably the first or second week of August, where they do a CT, make a mold of her little body for radiation and do a simulated radiation session.  (We don't have to wait for pathology reports to start radiation so that is good.)
Radiation will happen soon after that.

I had no idea there was so much to do before we started.  I'm getting so anxious to start radiation.  So anxious... especially learning that some rhabdo patients have had their tumors start growing again if the radiation wasn't done before 24 weeks.   Dr. Donaldson and Dr. Marina seem to be pretty anxious to get radiation started as well.

Again, we wanted to say thank you for all of your support.  We've been at this for 4 months now and it's exhausting.  We are so thankful for all of the big and the little things you have all been doing for us; the dinners, the cards, everything.  Please know that even the small gestures are greatly appreciated and they never go unnoticed!  Adam and I are both so grateful for your support and your dedication to getting Gabriella healthy again!

The phrase Dori from Nemo kept repeating keeps coming to my head through out this journey..."Just keep swimming, just keep swimming".

Go Team G!!

(I'm trying to read this over again to see if I misspelt any words but I'm so tired, I can't even see it anymore!)

Saturday, July 14, 2012

Surgery Postponed

It's Friday, we're home but the surgery was not done.  We drove up yesterday afternoon to enjoy a swim in the pool and have a nice dinner at the Westin, where Brook and Alison had gotten us a room. Grandma and Grandpa drove up from down south so they could help with Bridget while we were with G the next day.  We had a great time playing in the pool and the girls loved it.  We were settling down for the night and received a call around 8pm letting us know that there was an emergency at the hospital and they were canceling all surgeries the next day, including Gabriella's.  Apparently there was a water main break due to all the construction going on at Packard.  The water got into the ground floor of the hospital (where the surgery center is located) and ruined all the sterile supplies.  They were scrambling to prepare for any emergency operations and had to cancel all the scheduled surgeries.  I was so incredibly pissed last night.  All that mental preparation, the phone calls, and the physical preparation just to get cancelled the night before.  I had a handful of words I wanted to say to the nurse on the other end of the phone but what good was that going to do.  It wasn't her fault and it wasn't any of the doctors faults.  We sent an email to Dr. Aftandilian to let her know and she was pretty frustrated as well.  She had worked really hard to get everyone coordinated for G's surgery.   I can't dwell on what happened or try and figure out why.  It just happened.  We just move forward from here and get this surgery rescheduled.  If we dwell on it, we won't be able to move on.  Some things are out of our control.  That's just life.

This was just a quote I found online and thought it was applicable.  The universe is really humoring us.

"Trials and tribulations—not getting what we want when we want it, saying goodbye on terms we can’t control. Each of these is the universes way of humoring us, of helping us grow and allowing us to reframe the past from a place of gratitude for our present and our future."

“Learn from yesterday, live for today, hope for tomorrow.” ~Albert Einstein

The next morning where we would have been getting up at about 5:30, we slept in.  (Believe me, I would have been happy to get up that early to get this done.)  Adam and G woke before me and I woke up to a warm latte and a visit from Uncle Ronnie.  We packed up and went to Stanford Shopping Center for a visit to the Apple store, a new iPhone for me (mine was dropped and the screen shattered...not a kid friendly toy really) a late breakfast/early lunch and a trip to Sprinkles for cupcakes.  Gabriella is eating really well and seems to be feeling pretty good.  We actually looked around Macy's at some of the fun colored clothes before heading home.  We got a wonderful visit from our friends Bryan and Janet, who had planned to help us get through the surgery but came down to our house with food and wine instead.  I went for a run after they left while G rested and Bridget napped.  As I was on my run, I received a call from the surgeon, Dr. Brazoni who wanted to let me know they were planning to go ahead with the surgery this coming Friday, the 20th.  Everyone had been scrambling all day to figure out the "new date" and to once again get their schedules all coordinated.  We had been making calls to the surgery center and emailing our doctor to find out what the plan was.  At one point we were going to do another overnight chemo but that got changed quickly.  Good thing because we would have had to wait another 2 weeks after for her counts to go back up.
So, July 20th is the new date for her surgery.  As much as I'd like to write that in stone, I think I'll just pencil it in for now.

Wednesday, July 11, 2012

2 Days to go...and the WIG

Gabriella's surgery is in 2 more days.  I've intentionally kept myself busy so I don't have to sit around and worry about it.   I'm anxious about it.  Even though I know she is in good hands, I'm still nervous.  Just the other day, we found out that the plans have changed, yet again.

They will be moving one of Gabriella's ovaries for sure but the other is to be determined because the lymph overlaps with that ovary.  They will be doing an exam and marking the primary tumor site for radiation.  We just found out that they will be doing more biopsies as well.  These will be sent to pathology and they will be able to determine the "dose" of radiation to kill the cancer but preserve the good cells as much as they can.  This is a good thing.  I just wish I would have known about the biopsies before.  There are so many doctors involved with G's care that there is bound to be a miscommunication (or a lack of communication) somewhere.  I asked Dr. Aftandilian if I could be a part of this planning or at least know what they are talking about but she reminded me that I have to be a mom in this process, not a nurse.  It's more difficult than I realized.  I just want to know what they are saying and planning!!

Waiting for the pathology reports will also set the start of radiation back one to two weeks.  We were initially told that we would start a couple of days after the surgery.  I have been busy fixing up the RV in order for us to start living up there during the week starting next week.  We are now looking at the beginning of August.  Ugg.  Adam and I look at it as another setback.  The doctors see it as part of the plan.  I don't know.  I'm sure the overall outcome will be the same but its very unsettling to know that information given to us will be missed sometimes.  Plus, I just want to get radiation over with!

On another note, we got Gabriella's wig!!  I just love the fact that so many wonderful people donated their own locks to the wig and how much it signifies the support we've received.  It is a beautiful color of brown with little golden blonde highlights throughout.  They managed to combine all the brown, blonde, golden and light blonde hair into one beautiful piece!  Gabriella has put it on a couple of times but says its a little itchy. Lol!  I think she loves being bald and beautiful!  I actually love her being bald and beautiful as well.  Just having this wig for me is a wonderful reminder of the kind gestures that all of you helped create.  She can wear it as she wants but mostly keep it and look back as a reminder of how many people came forward to support her and our family!  Thank you to everyone who helped in this creation!!

Some purple and pink flowers for fun!

Bridgy enjoyed putting it on too!

My beautiful girl!

So fun!


Wednesday, July 4, 2012

A ton of THANKS

I've been thinking a lot about what to write after Sunday.  We've just spent a couple of days recovering after the amazing event and I want to make sure I write everything I had been thinking the last few days and try to express my gratitude.
I am overjoyed about the outcome of Sunday's event but that is an understatement.  I had hoped to meet many more of you but time got away from me.  There were people I saw and kept meaning to go back to say hi too but wasn't able.  The friends I did get to talk with made my day as always.  The people I just met who came out because you read about Gabriella in the paper or someone let you know of the event, my heart is forever touched by you.

To the women whose brother had rhabdo 55 years ago and that came up and gave me a hug, I hope we will do your brother some justice against pediatric cancer and know that he is not forgotten.  To the many families from "Circle of Friends" who we know and the ones we just met, G's babysitters, Gene and Janice from Make a Wish, my sweet high school buddies; I was delighted to see you all.  To my girls from Kaiser who brought their kids with them, to the families from the Santa Clara Fire department and an expecting mama with a 5 day countdown to their first baby who waited patiently outside the blood drive in the warm sun while her husband gave blood, I thank you.  Thanks to my family, along side my CrossFit family who enthusiastically sold out the Team G t-shirts and maned the tables as well as my extended Kuechle family who all drove from the bay area to show support and my mom for taking the girls home to rest.  All of the people waiting in line...some up to 30 minutes just to run through the obstacle course and the Santa Cruz Fire Department who came with about 2 trucks and 2 engines (maybe more but I lost count) just to show support and comradery.   TO EVERYONE involved in making this special day happen, especially Sam and Cliff, Danielle and Pat, Ronnie and Mel and to our friends who helped us celebrate at the end of the night...love you guys more than you will ever know.  And ALL of the individuals who gave blood!  Stanford was overwhelmed with the turnout and were so amazed by all of you.  We were there till past 4 pm and they were still taking blood!!  Tim, a coordinator for the blood drive told us that  he has attended events where they struggled to get 18 units of blood out of 5,000 people.  With all of us, they got almost 50 units!  There are just no words.

We had our weekly appointment today for G's chemo.  The labs from yesterday showed that she is neutropenic (with an ANC count of about 300) and a hemoglobin of 7.7.  I was worried that we would be staying for a transfusion.  But since she is doing so well and pretty energetic even with such a low hemoglobin, they were ok with letting her go home.  Whew.  I promised them cupcakes so we stopped quickly at Kara's Cupcakes for a treat.  G proudly wore her mask (because of her low counts) and started talking non-stop to a very sweet lady who was holding her little white dog.  Gabriella told her the story of her "friends throwing her a party a couple days ago" because she "has cancer" and there was a little white dog there she got to pet.   I think the lady was so blown away by this little girl and her little sister just chatting away about her cancer and her party.  I was blown away because its not normally like G to be so outgoing.  The lady told her how brave she was and let them pet her little dog.  I don't think she'll ever forget that moment.  I know I certainly won't!

There was a young girl who reached out to us after reading about Gabriella in the paper.  She is currently fighting rhabdo and was going to attend the event but ended up in the hospital.  I have been thinking a lot about you.  I was thinking how unfair it was for a young girl to have to spend her days worrying about her next chemo treatment, her next tests, her cancer...  Girls this age should be thinking about what outfit to wear, their newest crush or figuring out where to watch the fireworks.  I just don't understand how this happens to children and it breaks my heart.  We are so thankful to have meet your Aunt and Uncle who came to the event.  Hopefully we will be able to meet you soon.  Our heart goes out to you and we will help you however we can in this almost impossible journey.

As I was sorting through the laundry tonight and glancing at my little girls clothes, I couldn't help but become overwhelmed with emotion.  Their clothes are so bright and cheery just like the life of a child should be.  Children shouldn't have to worry about illnesses like these.  I won't ever understand why these things happen to children.

You have all made a huge impact in my life and in my families life, especially Gabriella.  A call for action was made.  You all answered it.  Not only did you answer, but you answered with vigor and passion.  Team G is strong.  Team G is a force to be reckoned with.

To all those little kids fighting cancer...this is only the beginning.  We will fight for you.


An entry from Sam via the Crossfit West Blog July 1st:

"I was absolutely blown away by the turn out for the Gabriella Cosner Team G Benefit, Obstacle Course, and Blood Drive on Sunday. Over one hundred people went through the O-course (fastest times were PJ Rubel and Kirsten Mehl), many more raffle tickets were sold, the Team G t-shirts sold out, and the Stanford Blood Van (they collected nearly 50 units of  blood!–usually they get about 18 units for every 5000 people at an event) stayed several hours later than it had intended to accommodate all the donors.
You know, it is sadly easy to get frustrated and worn out by some of the horrific headlines (woman kills her child for interrupting video game, screamed the San Jose Mercury headlines at the coffee shop this morning) and news items that seem to inundate us on a far too regular basis. But then something like the Team G Benefit comes around and it not only restores my faith in humanity but jumped it up several notches.
A huge thank you to everyone who came and supported. A special thank you to the volunteers and coordinators, from the Team G crew to the ScottsValley and SLV High Schools football teams and coaches. You guys are all rock stars. Thank you all very much.

An entry from Leah via the Crossfit West Blog July 2nd:

"Still fresh in my mind is the Team G Fundraising event yesterday.  I know that the Cosners were blessed and blown away by the tremendous show of support.  The Stanford blood donation team just couldn’t stop talking about the overwhelming turn out and the marked patience of all waiting to donate.  Even with after the wrap-up yesterday, we could list so many more wonderful things from the afternoon.
There were people who came and where able to meet Gabriella for the first time. There were people who came to who had never before met the Cosners.  There were people who came from outside of Santa Cruz, knowing that the drive was well worth the opportunity to be there in person."
I have always depended on the kindness of strangers.
-Tennessee Williams
"Over and over again you heard people introducing themselves to each other, looking outside of themselves in order to connect with others, strangers, who were all there to demonstrate kindness and support for Gabriella and the many other children who will face a similar battle."
No act of kindness, no matter how small, is ever wasted.
"So many gave of themselves in both big and small ways, and it was incredible to see everyone come together.  The acts of kindness shown yesterday are important, but so are the acts of kindness everyday-the kind words in the gym, the smile for someone who needs it, and all of the many, many other kindnesses are so important to each of us.  We need all of these, for Team G and for all of the others around us who might be walking through tough times, even when we don’t know it, small tough times or big tough times."
Kindness begets kindness evermore.