Tuesday, August 21, 2012

In the Trenches

I've been writing this post off and on since last week so bare with me.  There has been so much going on so I'll try to recap most of what I remember.  

Help with Bridget

We're so grateful for the help with Bridget this past week.  Danielle, with her use of only one arm due to recent shoulder surgery, and Uncle Ronnie and Auntie Mel took Monday, Jen McD took Wednesday (and even helped with the laundry that continues to pile up around here!), my mom came down to help because I was just having a rough time, on the verge of a meltdown myself.  So she came on Wednesday in the afternoon so I could get some rest.  Adam took G on Thursday after getting home from work and spent the night at the hospital for her overnight chemo.  And my sweet friend Brittany, momma of a 2 1/2 year old, a 1 year old and a baby on the way came over to help with Bridget on Friday.  This was the crazy day.

After G's overnight chemo and a blood transfusion due to her hematocrit dropping to 9.5 (needs to be above, she was a little tired the next day.  Even though it was known that she needed blood early in the day, it didn't come till 1am. Of course, her vitals needed to be taken every 15 minutes to make sure there was no reaction to the blood and with the fluids pouring into her making her have to pee every 2 hours or less, it made for a rough night for her and Adam.  Adam was so sweet to give me a break that night but we realized the lack of sleep was going to wear on him at work the next day.  Luckily he's been trained well being a fireman and continues to battle even with so little sleep.  Plus Santa Clara Co FD has been so wonderful about helping with his work schedule and we're very grateful.  G was taken to radiation the next morning and when she awoke, she was very fatigued; not herself.  The staff was concerned with her weight loss since this whole process began and more so in the last few weeks.  Well, yeah, you schedule a kid for her treatments in the late morning and she can't eat or drink anything before hand plus the fact that she's been having GI distress for the last week (which no one seems to think its from the radiation) not only radiating her tumor site but the area around it including her bowels and you're asking for trouble.  I think both Adam and I will give them hell if she continues to loose weight and they want to stick a feeding tube down her nose because of their scheduling!  Anyway, I'm ranting.
Since Brit was here and my mom would be back, I went up to relieve Adam so he could get to work.  We weren't sure if this would turn into an overnight but we were prepared.  It's a necessity to be prepared these days when you are in the midst of a battle.  She ended up drinking and eating enough to get us home.  I was honestly a little concerned to bring her home but I knew she would sleep better and feel more comfortable.

Radiation Day #6-10

The radiation seems to have caught up with my G girl.  She seems a little more fatigued and is having GI issues.  How could she not?  It's just torture to see her feeling down and disgruntled.
She wants to eat, I know she does but she is so nervous to take bites of food.  We didn't realize that having radiation to her pelvic area would result in nausea.  Apparently, there are nausea triggers not only in her brain but in her intestines as well.  We started giving her the Zofran for nausea around the clock and it seems to help a little.  They've run tests to make sure she wasn't fighting a stomach flu or any bacteria and everything has come back negative.
As of now (Tuesday), she's completed #12 of 27.  At least 27 is what they told us but the other day, we were told that we had been scheduled for 29.  We'll cross that bridge when we get to it.
We are starting to get our routine down and starting to get to know the staff at the hospital.  It's not just the doctors and nurses that we're befriending but the techs, the parking attendants, the security guards and the barista's in the coffee shop.  G is so amazing about reminding us to put on her green N95 mask that she wears because of her lowered immunity and all the construction going on.  When it comes to her propofol induced "naps", she says she "likes getting dizzy".  We'll cross that bridge as well when we get to it.  Her skin is looking great but she becomes much more fatigued these days.  I think we are as well.

Chemo Overnight #6

While radiation is going on, the chemo's include vincristine and cyclophosphamide.  The dactinomycin isn't compatible with the radiation so for this treatment and the next (in 3 weeks) we will continue with the two drug chemo.  These chemo's still count in our overall therapy of 14 overnights....so this means we've completed 6 of 14!  Total overall weeks of treatment is still 42 and we just completed 19...now 20!  Whew,  almost half way there!

Weight Loss and the Food

I have to say this has been one of the more difficult part of the journey for our family as we are now offering G anything and everything we can at all hours of the day (not including pre-procedures) and are getting used to a "no thanks" or "that hurt my tummy" in her very sweet voice.  Food, calories, cream, fattening condiments, ice cream for breakfast, cookies for lunch...anything we can think of to put weight on her and keep it on in the midst of being NPO for the better part of the morning and having waves of nausea throughout the day despite the Zofran we're giving her.  I rarely was the kind of mom who forced food on my child or made them eat their veggies.  Just serving them yummy healthy food and eating it ourselves was motivation enough for them to eat it.  I wasn't concerned about their weight and knew they were healthy enough to eat when they were hungry and stop when they were full.  Ugg.  Our pre-cancerous life was filled with veggies, fruit, and clean foods.  Even though we made our share of cakes and cupcakes, they were for clients and we often "tasted" but didn't "eat" these sweets (unless we were at a birthday party).  Adam and I have worked very hard to promote a balanced diet for our kids and now that world has flipped upside down.  It's so foreign to me to force (not physically, not yet anyway), persuade, dance on my head, bribe my child to eat and threaten her with an NG tube if she doesn't.  But this is the cold reality of our world.  To make it more difficult, we have Bridget (our 2 year old) who hears that we are offering G ice cream for a meal and starts to shriek, "I want ice cream" and won't stop until we give in.  With already exhausted parents, it's very easy to give in these days.  I just have to remind myself that this is only temporary.


I realize that many of you probably think I'm nuts to plan a bake sale in the midst of all this craziness but for those of you who know me, know that I always take on a lot.  My priorities will ALWAYS be my family and my Gabriella first, then everything else comes after that.  Believe it or not, we do have some down time...some.  After getting G and Bridgy situated for the day, week and following months,  making sure that the treatments are all scheduled and staying on top of that, making sure that G eats and that they both get their fare share of "mommy time" along with ALL the cancer mamma duties I have....I'll spare you the details and not re-cap all of them ;-), getting in some exercise and try to not go insane, that is when I plan and add in my philanthropic duties.  During that downtime, sometimes I find my mind wandering into the "what if" zone and thinking things I have to GET OUT OF MY MIND ASAP.  I have to think of Gabriella "here and now".  Planning for positive ways for me to make a difference helps me get through those times where I start thinking of how these toxic treatments and chemicals are going to affect my baby.  I just can't stand the fact that childhood cancer research gets so little attention.  The more I learn, the madder I get and the harder I want to work to make a difference.  Since I can barely plan for our regular lives, planning for this bake sale has given me a positive outlet; a way to channel all these feeling that I have; the loss of control, the frustration, the sadness...planning and positive...my outlets.

I've also thought about the fact that some have stopped reading the blog.  Maybe its to hard to hear, maybe it's just too much and it's so much easier to forget about it and get on with your regular lives.  So this I say, I am so grateful for those of you who continue with us in this journey.  Your strength and commitment is getting us through.  It's a very lonely world and I'm thankful to those that are willing to sacrifice emotions for us.

Food and Dinners

We are so very grateful for the food people continue to bring us food.  I can't tell you how wonderful it is to know that food will be coming and I don't have to stress about "what's for dinner".  It is tremendous help so we can spend more time focusing on Gabriella and Bridget.  Thank you Brit for bringing us some delicious soup and food to freeze for later, Monique for bringing us delicious meet and veggies along with a scrumptious fruit tart and Cindy Bogard for the yummy chicken enchiladas, salad, pie and treats.  The gracious effort that you all have made to make sure we are fed is a blessing to our family.

It feels like we are deep in the trenches of war except for the few times we've come up for air.  We knew that this part of the treatment would be the hardest and its proven to be so.  Many times I just wanted to lay down or fall on my knees but that is not an option.  My little girl is a fighter and I'll be damned if I'm not going to get her through this every step of the way!

G and her cousins Iskandria and Caiden.
Bridgy, my little cold burrito trying to get warm!

We got to enjoy some pool time at cousin Teagen's birthday party.
Needless to say, the girls had a blast!

Bridgy with the biggest dragonfly I've EVER seen!!


  1. Hi guys - it's your stalker, Jennifer, and this blog just tore me up. I can't believe how complicated and delicate this is getting. I just want her to eat and not have the pain! My own kid is suffering through a rough treatment of antibiotics that's really killing her belly and it's NOTHING compared to what G is going through. I can't even imagine how you two are getting up every day. I know we do but man, it's got to be hard.

    We are buying sweets from the sale. And if you need another name on the dinner list, let me know. Happy to bring over a meal or two.

  2. Hi Kristin and Adam - I check for blog updates everyday. It's hard to explain how invested I feel in your family's courageous battle. My guess is that there is a silent army of people, like myself, who read your posts regularly and are routing for G every step of the way. You have all changed more lives than you know. Love, Kirsten Mehl (CFWSC member)

  3. Hi guys,
    I know how stressful the eating/not eating thing is. During treatment, Carter lost a substantial amount of weight. We'd dance, cheer and promise him whatever he wanted to just eat. I was often making 4-5 different types of food for one meal because he'd say something sounded good, and then he wouldn't eat anything. Or he'd take one bit and get sick. I think they really want to eat, they just know the end result of how they'll feel :( I wish I had the secret, but (unfortunately) I think it's just part of the journey. Keep on trying, and doing what you're doing...mixing it up is always good too. Carter loved pretzels dipped in ranch dressing during treatment. Also, chicken, pita and hummus. You're doing great, and getting that much closer to the end of this nightmare. Keep smelling the flowers along the way because they will never smell as good as they do right now!! Big hugs!!
    Love, Kara, Matt, Bennett, Carter and Davis

  4. You are in the trenches, and just like good soldiers we will not leave you there. We've got your back and are with you in spirit all the time and in person whenever you need us. You are doing great being flexible with the meals. The food thing is temporary. I rolled sushi for Charlie one week and the next he was eating only Panda Express and donuts. Whatever it takes. You are doing a great job. Can't wait to bag some cookies with you!- Ang

  5. Hi Kristin and Adam,
    I just wanted to 2nd kirsten's comment about the silent army supporting you guys. I religiously check your blog every day and I just want you to know I will be rooting for littke G every step of the way. Thank you for taking the time to write this blog amidst the chaos going on in your life. I will spread the word about the bake sale to all my friends and
    family in the Santa Cruz area. Wishing your family strength and peace during this difficult time.