Thursday, May 31, 2012

News, news and more news

Ok, bare with me.  We got a lot of information the other day so I'll explain it the best I can.
It's a good plan!
Our doctor, Dr. Marina, ended up coming over to Gabriella's room after their meeting on Tuesday evening.  They call these meetings a "Tumor Board" where all the doctors collaborate on the care for specific oncology patients.  Instead of having us come back to the hospital for a meeting on Wednesday and since we were already there, Dr. Marina decided to come meet with us earlier.  Adam had already gone home so it was me and G.  We called Adam on his cell phone so he could be part of the conversation.  Not the formal meeting I had in my mind but I was really glad we didn't have to come back to the hospital after leaving yesterday morning.

We are chronologically at weak 9 but therapeutically a little over week 7 because of the two weeks of fever delay.  The tumor has shrunk significantly after only 2nd of the "overnight chemotherapies".  This includes the vincristine she gets weekly, dactinomycin and cyclophosphamide.  They were not able to see the left lymph node on the scans, which means it's responded well to the chemo.  They can still see the right lymph but it too has gotten smaller.  The PET scan, with the radioactive glucose still shows "uptake" of the right lymph but not on the left.  On the PET scan, the cancer is still active when there is "uptake" of glucose.  In regards to Gabriella's ovaries, the lymphs shrinking is great news!  They will be able to move her ovaries out of the waves of radiation. It seems like this is what they expected and after only 7 weeks of treatment, I'm positive about this news!!!

We were wondering and I had been asked a couple of times if the length of overall treatment would shorten from 42 weeks.  Dr. Marina said no, it is still the same.  The studies for rhabdo have shown much better outcomes from a longer course of treatment.  She said, "I want to cure her, not just treat her"!  It would have been nice to have a shorter course but I absolutely want to kill this cancer the first time around and never have it come back!!!  I am somewhat relieved that the treatment is still the same length.  We don't want to take any chances and will do whatever we need to.

The next big procedure (or surgery) will be 2 weeks after therapeutic week 10.  If everything goes as planned and we have no more delays, Gabriella will get her "overnight chemo" on June 13th or in 2 weeks.  Her counts will drop as expected.  Once they recover, the next big procedure will be scheduled.   Ok, the next big procedure will be a combination of three things.

1) A vaginal exam under anesthesia.  The MRI showed the primary tumor site being smaller but also showed what the doctors think is "fluid" in place of the tumor.  Rhabdo has grape like tumors which are fluid filled sacs (looking like a grape with no skin) that can evolve from the primary tumor.  I've seen one of them.  It's not pleasant.  The doctors want to examine what this "fluid" might be.  They suspect these grape like small tumors but we will see.
2) Clips for radiation to mark her cervix and the primary tumor site for radiation.  We will further discuss radiation with Dr. Donaldson but as far as we know, the radiation will not affect her cervix, uterus and possibly her ovaries.
3) Moving the ovaries out of the path of radiation.  The doctors are pretty positive that they can move the left ovary out of the way.  As for the right, they will move it in hopes that it will also be out of the way.  Time will tell.
We are both relieved that these will all be done in one surgery.  Whatever we can do to help her future hormonal function, fertility and normal development while killing the cancer is what we hoped for.

As for Radiation, this will start at therapeutic week 12 or a few days after her surgery.  This means we will be at Stanford every day for 5 1/2 weeks.  We are still trying to figure out the logistics on where to stay, if we need to stay, etc, etc.  They will more than likely put her to sleep every day because it's so important for her not to move.  They will use Propofol to put her under so her port will be accessed Monday thru Friday.  She's just at the cusp of being able to stay still because of her age.  Hopefully we can work on this so she doesn't have to go under anesthesia every day.

The last thing Dr. Marina said was, "Don't forget to have fun in between"!   We are doing our best to have fun but want to stay on our plan and out of the hospital.  We are guarded and nervous.  Adam and I need a break from the hospital.  We've spent about 12 nights over the last month there.  I want G to be home for a while.  It's going to be a fine balance between play and rest.   So if we ask if you have been sick, please don't be offended.  I know, probably a dumb thing to mention.  Just know we would love to see everyone but we are so guarded.

It's amazing how wonderful home feels and how nice it is for all four of us to be here especially once it's taken away from you.

Whew, ok...going to rest and relax with the family now and catch up on some much needed rest!!

GO TEAM G!!!!!!




Sunday, May 27, 2012

At War

I feel like this is a battle I was never quite prepared for.  I don't know what war feels like but this feels pretty close.  We are always living cautiously, ready for a bomb to go off.   Bags packed and ready for the next battle not knowing how big or small it might me.   We sleep when we can, eat when we can and prepare as much as we can.  The enemy feels like it's just lurking out there.  We just don't know where or when it will attack.  I want to fall on my face but I can't.  No matter how tired and exhausted we feel, it doesn't matter.  It's still there and we still have to fight it; every moment.  As a close friend let me know, "This is way more emotional.  In combat, everything is desensitized and your enemy is faceless.  It's easy to block things out.  Here, the enemy is inside somebody you love.  You can't kill the enemy without hurting the one you love even though you know it has to be done."

When I go to the grocery store, run my errands and check FaceBook, I find it hard to see all these healthy children running around and not be envious.  They are healthy.  They get to live life outside of the hospital walls.  My baby is stuck inside.  I'm not gonna lie; it feels like prison sometimes.  We are trying to make it as "fun as possible" but at times like these, it's not fun.  It's not fun to have a sick kid.  None of this is fun.  I just wish she was better.  I wish this cancer would go away.  

Gabriella's fever hit again today.  That means at least another 48 hours in the hospital, at least.  We are thankful that she received her three drug chemo yesterday but now she has a fever.  The blood and urine cultures they did earlier in the week are still negative.  Is this good or is it a bad thing?  Good I'm assuming because there is no bacteria growing but bad because we don't know why she's getting fevers.  Her counts have been high.  This is why they went ahead and gave her the chemo but why the fever now?   It's so scary to think that something more is going on in her little body and no one can figure it out.  So we wait.

On my way home from the hospital yesterday and coming back today, I blasted the song "Stronger" from Kelly Clarkson in my car.  It felt good to sing as loud as I could to pass the driving time.  I just wish I had a better voice.  Today, I ran through the little park near our house as fast as I could.   I cried, I screamed, I listened to "Stronger" over and over again.  I thought of what I can do to make this better, to get me through it so I can get the rest of my family through it.  I started to think about ideas for Gabriella's Victory Party.  It's going to be big...and fun.  I can't wait.

Saturday, May 26, 2012

Round 3 in the books

I am sitting in a darkened hospital room at LPCH watching G sleep.  Her blood counts came up sufficiently today so that they could give her round 3 of her 3 drug chemo.  This will put us almost 3 weeks behind.  If the last two illness had not occurred, we would be starting number 4 this wednesday.  Now I know why the docs said not to put them on our calendar, at least not in pen.  She had a very good day today.  We had lots of fun playing in her room, doing puzzles, cutting everything with scissors (including my hair, she laughed and said I look like swiss cheese).  She even did some squats and pushups with me, helping me get ready for the Crossfit for Kelvin workout tomorrow.  Of course no normal pushups would do, hers were ballerina mermaid princess pushups.  About 7:00pm she said she was starting to get a stomach ache and she immediately fell asleep.  I hope this means that her body is just recovering from the drugs she was given today.  They have not affected her this fast before so it makes me worried that she was not really ready for the chemo.  I guess only time will tell.  And I guess it is my job to sit here and worry.  Damn I wish I had a different job.
Thanks again for all the beautiful gifts and support.  It is really helping us out right now.  If any of you are looking for something to do tomorrow, Annie Sakamoto, the owner of Crossfit Santa Cruz Central is holding a benefit for one of her trainers who was stricken with lymphoma.  It is between 9 am and 2 pm with lunch and t-shirts and some fun Crossfit workouts.  I am hoping that she wakes up feeling ok tomorrow so I can sneak out of here for a couple of hours and represent Team G.

Team G


Adam

Thursday, May 24, 2012

And the pendulum swings back...

12 hours after our fantastic news that the tumor is shrinking, Gabriella walked into our bedroom with a fever.  We checked it throughout the night and just before 5:00am Wednesday morning it reached the magic mark of 102.1 and I packed her up and we drove to Dominican ER.  By noon G and Kris were in LPCH's ambulance for another trip over the hill.  The doctors at Packard think she may have picked up a Urinary Tract Infection but as of now the tests are inconclusive.  The good news is that her body was able to fight the infection.  That indicates that her immune system is still functioning, just suppressed by the chemo.  Kris stayed with her in the hospital last night and said that by 11:00 pm here fever broke (with the help of some serious antibiotics) and they are hoping to resume chemo tomorrow morning if she can remain afebrile for 48 hours.

Grandma and Grandpa (my parents) showed up yesterday and are helping with Bridget and the rest of the logistics necessary when we are in the hospital.  I have to admit this is an emotional roller coaster that I never imagined.  To watch G go through the pain, sickness, fever, fear is complete torture.  Just when we think that we won't be able to take another minute, it breaks.  Something happens that lightens the load.  Whether it is the kindness of a friend or stranger, the strength of our child, or news that the treatment is working, it saves us.  It realigns us and keeps us going.  We get a great deal of kind words from people but realistically we are doing what we have to do and it is truly the kindness of our support system that is pushing through this.

Here is the link to the Santa Cruz sentinels home page, the lower left hand corner has linked the Community Media Lab to this blog.  I'm not sure what it is about but I like the fact that they have taken an interest in our story and hopefully it will just lead to more support and good thoughts and prayers for G.

Team G


Adam


Yes, I almost was a patient over highway 17.
The ambulance ride might be Adam's permanent job. 

Bridget in the Forever Young Zone making G a smoothie.  

G in her pretty new dress from the Hartfield's.

Tuesday, May 22, 2012

THE TUMOR IS SHRINKING!!!

We've finally gotten some amazing news since this whole journey has started!!!  Anxiously waiting to hear from the doctors yesterday, we got the call that Gabriella's ANC count went up to 2000 and we were going ahead with her overnight chemo this week.  But the big news we were waiting on came a little before noon today.  The preliminary results of the tests done on Friday show that Gabriella's tumor has significantly shrunk...SIGNIFICANTLY SHRUNK!!  In fact, Dr. Aftandillian told us that "It's shrunk...if not gone"!!!  WOW, it's working.  Adam and I are elated to know that the chemo is working.  It's killing the cancer.  We won't stop until every cancer cell is gone and we get our healthy little girl back.   I remember seeing the MRI and how big this tumor was just a couple of months ago.  That image will be forever burned in my mind.  It will be settling to see the new images and see how small her tumor has gotten.    

With any positive news comes some apprehension.  There are so many questions that I still have.  How is this going to effect the rest of her treatment?  What about the radiation?  Her ovaries?  Future surgeries?   The meeting for May 29th is still happening.  All of the doctors involved in Gabriella's care will meet to discuss her progress and our next steps.  We will be meeting with them the next day, May 30th and I expect the majority of my current questions will be answered.  There is still so much more information to collect, to process and to evaluate.  I still have trouble catching my breath at times.  It's hardly the end but it's a wonderful victory and of course we are celebrating this one!




The past couple of days have been a mini vacation for us.  We've had a wonderful time playing on the beach with our great friends John and Una; more lovingly known as Uncle Johnny and Auntie Una who rented a house on Rio Del Mar beach.  Since we haven't been able to go to far, any time away from home has been like a vacation.  On the lead of Uncle Johnny, we have been busy building sand castles (or fortresses) every day and trying to keep Bridget from crushing them!  We've watched dolphins swim by, pelicans diving for fish, eaten sand filled Pirate Booty, made sand cookies and jumped over endless waves crashing on the beach.  Auntie Una and Bridget have been working hard on making piles of white shells and black rocks while we dug up hundreds of sand fleas.  Gross but very entertaining for the girls and a favorite beach memory for me.  It's amazing how little it takes to appreciate life these days.

As Grandpa said today, "That little girl has gone through hell and deserves a lot of fun times".  We really agree and are having as much fun as we can but taking into consideration that we can't wear her out.  The goal is to to keep her healthy but give her as normal of a life as possible under these circumstances.  It's such a fine balance right now.  We walk the line more severe than we did just a few months ago.  As a parent, you want to make the right decisions for your kids and help them make the right choices.  In this situation, there is so much more relying on our decisions.

I am still so hopeful and positive!!!

TEAM G is AWESOME!!!

My Cuties!















Friday, May 18, 2012

MRI Done Today!!

I don't know, maybe it's the little victories that will get us through this. As we were coming back from our PET scan today, the people from MRI asked us, "Did you know she's getting her MRI done right now?". I said, "Um, yeah!". Apparently there was a patient schedule today who had to be rescheduled because he/she ate lunch!! Talk about a blessing!! I literally began to cry with happiness. Whether it was a little bit of hope in this crazy journey or knowing that our hard work had paid off..whatever it was, it came to us as a blessing. All the effort to get her scheduled for these tests on the same day paid off, and not a moment too soon. We tried to keep her sleeping in the PACU so they could get the MRI ready but she woke up... pleasant. She asked for rice crispy treats, water and cinnamon toast crunch. I did my best to distract her and refocus on something else. She got a little upset but off we went to the MRI. They had to give her meds again to go back to sleep. First a little Versed then Propofol. I'm familiar with Propofol because we use it in the ICU often. They told us about 2 hours. Adam and I actually got to go across the street and have dinner at California Cafe, a date? It was alone time and it was wonderful. Bridget went home earlier with Nana and Papa for a short nap and some play time. As we were sitting having dinner, Packard called me. I almost had a heart attack just seeing their number on my caller ID. They were finished earlier than predicted. So, we gobbled up, paid the bill, ran back to the hospital, got cramps from just eating, and now we are waiting for her to get to the PACU again to recover. Then we go home. Results? Probably next week. I know the tumor has shrunk. I can't see it nd the doctors can't feel it. I AM HOPEFUL.

PET SCAN

As of now, Gabriella is having her PET/CT test done. Even after 100 phone calls of pleading and begging to the radiology department, oncology clinic, doctors, nurses, managers, we were not able to get her MRI done on the same day. Damn it. We have to come back on Tuesday. Damn them. I just don't get it. They even knew that we were going to have these tests months ago. It makes me want to pull my hair out. She has to have more anesthesia on Tuesday. I thought this time maybe the whole process would be a little easier because she's done it before. I was wrong. It just doesn't get any easier to see your child poked, prodded, and put to sleep against her will. She's getting the radioactive glucose again which has to circulate through her system for an hour before they start. Great, more poison being put into my little girl not to mention the radiation. I can't think about that anymore. The alternative is not an option. So, we wait....

Tuesday, May 15, 2012

No Overnight Tonight

Gabriella's ANC was still low from yesterday's blood work.  It's gone back down since our discharge on Saturday.  She's still fighting this virus.  This means that they couldn't give her her overnight chemo (the combination of 3 meds), the same three meds they couldn't give her last week because of her neutropenic fever.  Ugg.  However, she did get her weekly vincristine today and sent us home.  At least that's something.  At least she gets a little break.  I just don't want to give her cancer any chance to grow further by delaying her chemo treatments.  It's a very fine balance and we are walking a tight rope every day.  

The doctors say these "setbacks" are common.  They don't actually consider them setbacks but just part of a cancer patients life.

So far, Friday (the 18th) we are scheduled for a PET/CT at noon and Tuesday (the 22nd) will be the MRI.  I'm sure that will change as everything else has.  I feel like a ping-pong ball being bounced around everywhere at every moment.  Surprisingly, I don't mind.   It's just a part of this whole journey to get my girl well and I'm willing to do whatever it takes however exhausting it might be.  It's a very strong trust that one must have in the medical system.  Yes, we are doing research and making sure we ask the right questions but at some points, we have to let go and trust that she is getting the right treatment.  It's a VERY hard thing to do especially when we know so much about the medical field.  We just don't know very much about cancer...but we are learning...and learning fast.

Tomorrow we have a "rest" day.

Kristin

PS.  A very special thanks to Michelle and Cara for an Amazing Mama's Night Out!!!  Pics to come.
AND, thanks to Sue for planting our ice plant.  Amazing friends we have!

Sunday, May 13, 2012

To my Kris

I wanted to put this on the blog so the people who are supporting us will know ow much you mean to me, to us, to the family you have raised and nurtured.  For the last ten years it has been us.  You and me.  Through times that I wished would never end to times that we cannot get through fast enough.  But it always has been us.  I am so proud of the mother you are.  It brings me to my knees to watch you with our girls.  Your patience and understanding with them is remarkable.  One word that always come to mind when I think of you is grace.  Grace in every meaning of the word.  Grace in movement, action and thought.  Right now we are faced with the fight of our lives and I know that I will battle and survive, you will come through with grace.  And our angel will be better for it.  We all will be better for it.  We all are better because you are in our lives.
I love you with everything I have.

Team G


Adam

Kris, G and Boudrow in Oklahoma.

El Chorro, Spain

Paris, France.  The trip where we got engaged. 


Going for a hike at the Grandparents house.

Pregnant and sick.

Our trip to Kauai.

Kris and Charlie, our first dog.

Kris and Brit

Climbing Cathedral Peak, Yosemite

Gibraltar with the friendly monkeys.

Gabriella.

Camping in Joshua Tree.

In Philadelphia with nephew Theo (a cancer survivor)
and nieces Elizabeth and Corinne.

Coming home from work at CHO.

Mendocino, first anniversary. 

Rappelling.

Hiking around in Tahoe with G.

At a wedding.

Saturday, May 12, 2012

Home...for now

We made it home today.  I was so excited yesterday to come home.  Gabriella felt great, her fever had been gone for over 24 hours and I just knew her counts were up. The one thing we were missing was her appetite.  She still had no interest in food or drink until I said "do you want to go home?"  That would motivate her for a few bites but really no more.
The last few days in the hospital we have gotten into a morning routine.  Gabriella has been sleeping in until after nine so I was getting up between 6:30 and 7:00 and guarding the door.  It is amazing how many people feel the need to come in her room when she is sleeping.  The most entertaining are the young resident physicians who want so badly to do their "assessment" that they forget that the patient is MY sleeping child.  Todays resident was too funny.  He came in and I got out bed and stood between him and G.  He asked how she was doing, I told him she was sleeping which was pretty obvious.  He kept looking past me with his stethoscope in his hand talking about his assessment and I just stood there blocking his path.  Eventually he understood that he was going to have to physically move me to get it done so he just gave up and left.
I monitored G's temperature pretty closely last night and this morning and was horrified when it was 99.8 just before we were going to go home.  The discharge papers were in.  G was fired up to go home and Mommy and Bridgey were en route.  I thought frickin' crap (one of G's new phrases) but when Dr. Marina came in she advised me that she was no longer neutropenic and she will fight of a low grade fever.  It still left me quite uneasy but we loaded up the car and home we went.
Kris and I got a little relax time before she loaded up and delivered a cake and then took off for the Mammas Night Out festivities.  G and Bridgey spent the evening enjoying each others company, they took a long bath together and played some crazy games with some toys that G got at the hospital.  It was so nice for them to be back together again.  I can't wait for tomorrow when the four of us can hang out and relax together.
Tuesday G goes in to El Camino for the overnight chemotherapy session that she missed last Wednesday so we are technically not quite a week off schedule.  The oncologists are pushing it a little bit because they were able to get her PET scan, CT scan and MRI all scheduled for Friday and they want to make sure that the two do not interfere with each other.  I'm assuming that by next week we will know how well the chemo is working and we will sit down with the radiation folks to schedule our 5 1/2 weeks of radiation therapy.  After Tuesdays chemotherapy, we will be over 20% done with chemo.  Seems like it only just started.
Uncle Ronnie sent me a link to a video that was made by a patient at the Seattle Children's Hospital with some oncology and hematology patient's lip syncing a song called "Stronger"...just click to watch the video.
Grab a box of tissue and enjoy.  It is some pretty powerful stuff.
Wish us luck for another hectic and trying week.

Team G


Adam

An Update

It's Friday night...actually Saturday morning.  Gabriella is still in the hospital.  Our quick visit to the ED turned out to be 4 nights recovering at Packard.  G's ANC (immunity) went from 970 on Monday to 340 on Tuesday (the number from the ED blood draw).  This was why she got the fever.  I had no idea it could drop so quickly.  It just makes us realize what were actually dealing with here.
Her counts "went up" yesterday to 540 but the lab work was actually not accurate, which we learned today when her counts were only 140.  The doctors said that this was more likely to be her true count because of the way she was feeling yesterday (crappy) vs. today (bundle of energy).  They think that she was probably at 0 yesterday because that would most likely describe her clinical picture of still feeling bad.   It's hard to believe that sometimes you can't actually trust the lab work.

The doctors were talking about the possibility of giving G her chemo but her ANC had to be at 750.  As we know, things are constantly changing and now we are just hoping her counts will go up so she can come home tomorrow.  Once she recovers, she will go in for her 3 chemo and another overnight in at El Camino.  This will most likely be next Tuesday or Wednesday.

She is doing great.  Today, Bridget and I drove up to the hospital to visit since B's cold has now past.  She really misses her sister and loves to talk to her over FaceTime.  Bridget gets the biggest smile on her face when she talks to G.  It's definitely has thrown us all off but especially B.  Gabbi was so excited to see her sister and wanted to show her the toys, the playroom and the library.  Adam pulled them around in the wagon and they had a great time.

Adam and I are exhausted.  I miss him so very much.  We've taken turns with driving back and forth from Packard to be with the girls.  He's been doing the lion's share with Gabriella and I've been back and forth. The drive is so incredibly hard, almost unbearable.  I'm leaving my older baby to be with my younger baby but there is a huge gap in between.  Too much time to think.   Even though the drive is only about 40 minutes, its the worst 40 minutes of the day!  I can't be with either of my girls and it makes me so sad, frustrated, angry, etc.

I'll write more later.  So tired I'm gonna land face first in my computer.

Wednesday, May 9, 2012

Setback #1

Well yesterday turned out to be kind of tough for G. Night before last Gabriella started running a low grade fever. We kept an eye on it and it was pretty much gone by the morning. I went to work and about 2:00 Kristin called and said that it had spiked and she was heading for the hospital.
Everyone at work scrambled and got me back to my station immediately and home I went. When I arrived at home, our neighbor Julie was waiting for me in the driveway keeping watch over Bridget while she slept.  Papa(Kris' dad) got to the house a little after I did to watch Bridgey and I ran over to Dominican Hospital to be with Kris and G. Bridget got to spend her birthday with Nana and Papa.

G's fever subsided but blood blood work did not look good. Her Absolute Nuetrophil Count had dropped below 500 which is apparently bad and her hemocrit and hemoglobin counts were way down. Dominican Hospital contacted LPCH and they sent a BLS ambulance for the ride over. The EMT in the back played some lulabye music and G slept for most of the ride. She slept pretty well last night, they gave her antibiotics and fluid. She woke up today hungry and happy. Her blood counts are still down say they will give her a transfusion and wait for things to improve. The doctors say it could take as long as a week but probably sooner. A group of doctors just came in and said she probably picked up a virus from her sister. She is in very good spirits. She feels fine and we are having fun running around the hospital. They say she will have more energy after the transfusion but she seems to be at pretty normal energy levels now. Just a little pale. I'll try to keep the blog updated as much as possible for the next few days. Keep up the prayers and thoughts. I am truly convinced that the positive energy makes a difference. I know this thing is stronger than me but it is no way stronger than us. Team G Adam

Tuesday, May 8, 2012

HAPPY 2ND BIRTHDAY BRIDGET!!

Dearest Bridget,

It seems like forever since I last wrote an entry in your journal.  Since the last time I wrote, the world as we once knew has forever changed.  As you will learn later on in life, Gabriella has been diagnosed with cancer and we have been on survival mode.  You will learn the gravity of this when you are older and how we pulled together as a family to get through it.  We've just been gathering our thoughts and trying to figure out this whole new situation.
You are turning two today.  Even though it has come with some tough challenges, you are like a breath of fresh air.  You have been amazing through this whole journey and I wanted you to know.  You are a regular two year old going through some extreme circumstances.  With special strength inside, you've given us joy hope and laughter.  You have gained the ability to see when your sister is hurting and have shown so much compassion for her during those difficult times.  The kindness in your heart has shined through even though you are only two.
I remember one day when sissy was really sick, you were trying to get her to take her medicine because you knew it would make her feel better.  You showed her the medicine and said "Here Sis" as she was lying on the bench outside.  Then you patted her head, arm and placed some blankets on her.  It was the sweetest most endearing thing to watch.  I have seen an incredible relationship forming between you and your sister.  I hope you will have that special bond for years to come.
Other than that, we have watched you run around everywhere, get into everything, make messes and explore your world like two year olds should do.  It's just cute to see you run everywhere because you don't walk, you run, you bounce wherever you go.  Its a joy to see and watch you grow.
I know you get nervous on the days where we have to go to the hospital and I know you are aware that things are going on, especially that first month when life was so chaotic.  I knew you felt that and I could see it in your eyes.  Like the family that we are, we just kept trucking through.
You've shown strength within you that I never thought a two year old could have.

I hope we can celebrate your birthday being just as special as every birthday is even though things are tough.  I hope we do right by you and allow you the freedom to be a child even though we have thrown you into such an adult world.  We are doing our best to keep you with us as much as possible while balancing your naps, rest time and health.  It's not easy to do but I don't think any of this is easy.  We want you to stay healthy and rested but still be able to be with us and enjoy our day trips to the hospital and stick together.  In the long run, it might be better for you because I know you miss sissy when she's gone.  I'm just so glad its not every day that we have to be doing this.  At least we have breaks in between.  When your 13, 16, and 21, we're all going to look back on this and know that we made it through together.  In the end, its going to make us stronger, more appreciative, kinder and much braver than we could have ever imagined.
 
Today is a VERY special day.  The day I laughed you into our lives (I'll explain that one later) and got to bring you home on mothers day.  You were my little mothers day present and I'm so proud of you and proud to be your mommy.  I'm proud to have you as my little girl.  I just want to tell you how much I love you my petit gateau (little cake)!

I love you baby.

Kristin

Monday, May 7, 2012

A Wonderful Weekend


The weather was wonderful, G was feeling great and we celebrated Bridgy's 2nd birthday by throwing a little party for her.  Her actual birthday is tuesday but what better day than Cinco de Mayo to celebrate!

The last week was pretty busy.  We spent wednesday in the hospital for a couple of hours for G's weekly chemo (Vincristine) and talked with the doctors about upcoming events.  We thought that the PET/CT scan would be done the first week of June, before radiation, but we were told that its going to be scheduled for either the week of May 14th or May 21st.  The doctors will all have a meeting to discuss Gabriella on May 29th and will need the scans before hand.  They need to see how much the tumor has shrunk and discuss the option of moving one of G's ovaries out of the field of radiation.  If the chemo doesn't fry her ovaries, the radiation certainly will.  This procedure will help her have a chance at possibly being fertile when she's older and possibly help her with hormonal changes at puberty.  But this entails another surgery, possibly two; one to move the ovary and one to move it back?  Still so much information to gather.   It makes me anxious just thinking about what's to come but it does help to talk about it.  I am just trying to mentally prepare myself for those couple of weeks.  We will be finding out a lot more information this month.  

The rest of the week was spent with me obsessing about having my house clean and getting ready for Bridget's birthday party.  Yes, I obsess about having things clean around here...the floors, the carpet, the grounds outside, etc.  It wasn't so bad before G was diagnosed with cancer but now, I'm realizing its just a way for me to take control.  Everything I'm feeling is 100 times intensified these days and I'm still trying to figure it all out in my head.   I am very hopeful that the prognosis is positive for Gabriella but the steps to get through this are going to be tough and there will be unknowns along the way.  Cleaning, organizing, purging dresser drawers, clothes and kitchen drawers gives me control over my world.  I know what the outcome will be....clean.  If I'm not cleaning, I'm exercising,  running, pulling weeds (I guess that's another form of cleaning), etc.  but trust me, I do spend lots of time with my girls and enjoy every moment; even the tough ones ;-).  If you see me vacuuming or blowing the yard at midnight... just wave and tell me it will all be ok!

Friday, I actually made it to an ACLS/BLS class to renew my certificates.  The week that Gabriella was diagnosed and we were going through hell, I happened to look in my wallet and realized my certs expired the end of March.  I just new I wasn't going to get it done...the least of my worries and my manager was great about it.  But now that things are settling down for the moment, I wanted to take the class.  It was hard to leave but I knew Gabriella was feeing great and the girls were going to be with daddy.  I got to feel a little bit normal for the day.  As I walked down to see my manager, I just couldn't help myself and tears overtook me.  Just to know how much support is coming from my co-workers overwhelmed me and I feel so lucky to have that support.  It was wonderful to talk with my manager, Maryanne and assistant manager, Dulce.  Thanks you guys!

Bridget's birthday party was so much fun!  We had a petting zoo with bunnies, pigmy goats, chickens and a baby pig that squealed like he was going to die when being picked up.  Bridgy had a Minnie Mouse themed cakes and cupcakes courtesy of Sassy Cakes and Cupcakes (me ;-)).  They could barely keep their hands off the sweets before the party even started.  Mostly, both of the girls had a wonderful time playing with the animals and didn't leave the animal pin the whole time!  It was a great day celebrating with our closest friends and family.

As for today, Sunday, the girls and I went down to meet my sister, Andy and his great family at his parents beach house in Aptos.  It was incredibly beautiful at the beach and we had an AMAZING day!!!  The girls ran around in the sand with their cousins playing in the waves and just enjoying life!  It was wonderful for me as well because it just felt so good to be out and about.  We are so lucky to live in such an amazing area and have such an amazing support system!  I am most thankful that Gabriella is feeling so great most of the time and that we DON'T have to be in the hospital day in and day out!!!  G having cancer sucks ass but I am so thankful that it is not worse and that we are able to enjoy life!!

Wednesday will be our next inpatient visit for the three big chemo medications.  Maybe that's why I wanted to play so much this weekend!  She feels pretty crummy the weekend following the 3 chemo's and the weekend after that her immunity drops so this weekend was a perfect time to get out and enjoy.

Bridgy, the birthday girl...loving the bunnies!
Minnie Mouse Cupcake Tower!
My G with her beautiful face painting!


Creating a little pool on the beach.
Bridgy with cousins Caiden, Iskandria and the Hardy's little girl!

Loving the beach! 
I love this picture.  It sums up the day!




Sunday, May 6, 2012

Bridgey B

That's what we usually call Gabriella's little sister Bridget who will turn two years old on Tuesday.  I have spent so much time and energy concentrating on G and her cancer that I worry that Bridget is not getting all that a beautiful and wonderful 2 year old deserves.  This weekend Kris put together a little birthday party for her.  It was such a great party and I really think it meant the world to Bridget.  We had a lady come with a little petting zoo and a few friends came over to help Bridgey to celebrate.




Bridget and Gabriella have been very close since Bridgey was born but we have seen some pretty amazing sympathy from Bridget for her sister that shows us their bond is deeper than we imagined.  When Gabriella was lying on a little bench in our front yard feeling kind of ill, Bridget walked up and put her head on her chest and just held her for a while.  We really have no idea how much the girls truly understand about what is going on.  I hope that we can continue to be positive and help our girls through this so when it is all over we can return to a normal life.

Tuesday, May 1, 2012

A Good Day

We are so pleased that Gabriella is having more good days than bad.  It's so amazing to see her bounce back from these treatments every week.  We are starting to see more of a pattern of how she's feeling, the toughest days being Thursdays after her chemo treatment on Wednesday.  Wednesday is always a packed day and Friday is off and on.


Today Gabriella visited school again.  She was so excited to see her friends, check out the gifts (thanks Stacey for the bear), but also surprised me by picking out one of her Barbies to give to her friend Shelby.  She continues to amaze me every day by her kindness and strength.

  

Bridget ended up staying with G at school and both girls played with their friend Lily.  Bridgy just feels so comfortable and confident having her big sister there to protect her.  It's adorable to see!  
Yes, this is the same dress she wore for the recent photos...thanks Michelle for letting us borrow it.  She loves it!   


After running back and forth from school to whatever errands I could fit in, we finally made it back home.  Auntie Jen and cousin Ella brought an adorable hat and some great chemo books then Nana and Papa came over for dinner.  

Gabriella was so excited when a box from Jelly Belly came but I made her wait until Bridget woke up from her nap to open it.  It was a wonderful package from the Berkeley Firefighters with purple pillows for both girls, jelly beans and a jelly bean dispenser.  I can see we will be eating a lot of jelly beans in the near future!  Thanks guys!  They loved the package.  











Another visit to Lucile Packard tomorrow for G's chemo.  Hopefully we won't be too long so we can come home and relax.  Actually, it's a busy week with Bridget's birthday coming up but I'm excited to celebrate B turning 2!