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.
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.
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!|
|Playing in the garden terrace at El Camino.|