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
Saturday, May 12, 2012
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.
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
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
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.
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| Bridgy, the birthday girl...loving the bunnies! |
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| Minnie Mouse Cupcake Tower! |
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| My G with her beautiful face painting! |
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| Creating a little pool on the beach. Bridgy with cousins Caiden, Iskandria and the Hardy's little girl! |
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| Loving the beach! |
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| 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.
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!
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!
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