Sunday, September 23, 2012

Special moments

The girls are both doing amazingly well.  Gabriella is just a bundle of energy and Bridget is right there behind her doing what a little sister does best...following her big sister around and snatching her toys when big sis isn't looking.  The aches and pains of the radiation seem to be subsiding and G's little body is healing well.  The redness and burning with every bathroom visit has gotten better, although still slightly there.  I'm always amazed at how much energy she exudes everyday.  Both girls are running around most of the day, chasing each other and playing outside.  G's new thing is to dance ballet to her music box.  Of course, Bridget is right there to perform as well.

I think Bridget is just as excited as the rest of us to have radiation complete.  I notice a sense of calm about her especially at bedtime and nap time.  She knows that when she wakes up, Gabriella and I will be there.  Before, I could sense her anxiety about going to bed when G and I would have to leave early for the hospital.  She was uneasy about napping and I had to reassure her (to the best of my knowledge) that we would be coming home.

We've been doing our best to get back into some kind of grove this week; some kind of normalcy and routine.  Adam and I have been able to get back to the gym and get organized back at home.  Picking up the tasks that were left behind for so many weeks; laundry, bills, etc. etc. has been a big chore but we're slowly chipping away at it.  It's what most people do after a long trip yet the memories are ones that I want to forget.

Chemo Day...

Thursday was our regularly scheduled chemo day.  Adam had to work so I took both girls up with me. I thought, "Heck, we just made it through radiation, this should be a breeze".  Famous last words.  For some reason, the whole day was just a bit off starting with morning traffic getting us a late arrival to the hospital.  The clinic was already backed up about an hour and by the time we got into the room, the girls were arguing and I was about to (calmly) pull my hair out.  Finally after seeing the nurse practitioner, we made it to a room, got G accessed, labs drawn, and got her chemo.  It was past lunch time so we went to grab some food at CPK.  After about 4 trips to the bathroom and Bridget refusing to wear her diaper anymore (such timing), we ended up taking the rest of the afternoon to go shopping at Macy's for some "big girl undies".  The girls were so excited for Bridget to get to pick out her new set of "Dora undies" and play chase through the store ;-).  She's just growing up right before our eyes!  Of course, Gabriella had to get new Hello Kitty undies as well.  I was wiped by the end of the day but once the girls went to bed, it was off to the computer to work on the bake sale logistics, organize and return emails.

Friday was a last minute and fun dinner with the Winter's after a few errands during the day and asking for donations for the bake sale.  Woodworm in Santa Cruz has been amazing and incredibly supportive with the bake sale.  We replaced G's costume from last year, which has gotten a lot of use during dress-up play.  She insisted on wearing it to dinner, wig and all.  How could I resist when she looks this cute?  I'm sure we'll be back for another halloween outfit in a few weeks!

Today (Saturday) turned out to be pretty special.  The morning was spent playing Strawberry Shortcake, watching Barbie and trying to get us out of the house to the gym...unsuccessfully.  We ended up at Hocus Pocus park to have a little fun before Bridget's nap where there was a cute ladybug birthday party going on.  Gabriella made a new friend, Leah, and Bridget played with a couple of tiny tots as well.   It's always so amazing to see the little kids playing together.  I get the special advantage because I'm the hovering mom with the hand wipes and sanitizer spray running after the girls to clean their hands.  What was really sweet was to see how protective G was over her little sister.  She'd say to the kids, "Watch out for my little sister.  She's right there" or "Be careful of my little sister.  Her name is Bridget".  They definitely seem to have an amazing bond and a special way to get through this together.
The mom throwing the birthday party, Stephany recognized us from the blog and invited us to catch ladybugs with the kids at the party.  She released about 1500 ladybugs and each little kid had a container to catch them and bring them home to put in their yards.   It was a pretty special moment watching all the ladybugs flying around, landing on the kids, and watching the kids go crazy trying to catch the little bugs to put in their containers.  My girls got to be a part of it and Gabriella didn't stop talking about it the rest of the day.  So, thank you Stephany for inviting us to be a part of your daughter's special day. You made it really special for my girls as well!

As much as we would like to leave this pediatric cancer world behind, it's always something that is going to be right there in our face, like the big white elephant in the room.  No one really wants to talk about it, no one really wants to be reminded about it but it's always going to be there.  With every cough, every stomach pain, every odd looking bump or bruise on our children's body, it will always prompt the questions, "Is that cancer... is that a sign that my child has my other child going to get it...are we going to have to go through this again?".  These amazing people have entered our lives and as painful as it is to hear their stories, we can't and will never turn our backs to them.  We will always be there as much as we can; for comfort, celebrations, and for those god damned funerals.   Sometimes I don't think I'm strong enough to be a cancer parent and get so involved but as I've said before, I can't turn away...not now...not ever.  

And there it is, it hits like a ton of bricks, almost knocking the wind out of you.  A couple of days ago, I got an email from a new friend we met at Camp Okizu about her little girl Anelise's recent CT results which came back...positive for a relapse.  A progressive form of her cancer had come back ravage her little 4 year old body.  What?  How can this be?  I can barely think the question that I hate to think, the one that I push deep down inside when it starts to haunt me, "...could this happen to my child?".  As I read her email leaving the gym and trying to maintain my composure, I felt a lump in my throat and my knees got week.  Now, I know how it must feel to be on the "other side".  You feel helpless and grasp at whatever it is you think of to help this person telling you this horrible news.  I drove around running my errands in a daze the rest of the day, realizing finally at 4pm that I forgot to eat, just trying to figure out how I can make this better and thinking if only one less parent had to hear this kind of news.  Sitting here writing this, I can hardly hold back my tears.  But, we must stay positive, strong and continue to act.

Hence, my bake sale commitment.  I can only think that what we are trying to do by spreading awareness and by raising funds for childhood cancer will help.  If it helps just one parent from hearing the words, "Your child has cancer" or from one child having to endure cancer treatments, I must continue to fight; not only for my daughter but for all of the children and families out there.  I often wonder what is it going to be like when Gabriella is cancer free...will I continue to be as committed, will I continue to have so much motivation... and I just answered that question.  HELL YES!!!

Tuesday, September 18, 2012

Another Milestone...Finishing Radiation!

One day at a mile at a foot in front of the other.

Ahhh, wow.  Done with one chapter and on to the next.  Sorry for the lack of posts this past couple of weeks.  We've been basking in the glory of finishing Gabriella's radiation treatments and trying to "clean up" what we've left for so many weeks...laundry, bills, dirty dog, dying plants, uncleaned fish tanks, unattended yards, fridge clean out and grocery store trips ;-).  That felt like the longest marathon ever but that's pretty much how we had to look at it.  We still have 18 weeks of chemotherapy and are still guarded but the worst is over.  One more day, one more mile and just put one foot in front of the other until we crossed the finish line.  Success.

Our last week of radiation proved to be difficult but it was basically like Friday's...TGIF.  We knew we were at the end and just needed to make it through the last 4 days.  The weekend "recovery" was hardly that but we enjoy every precious moment when we are all together.  G was back on her GCSF shots (not fun but Adam and I have gotten used to them and have our routine) and Bridgy was getting over her cold.  I'm not sure how we did it but G managed to avoid getting Bridget's cold.  There were still sneezes exchanged by both but the majority of the boogies were gone.  Whew!

Monday morning was the same; difficulty in waking up, getting going and getting motivated but we somehow managed to do it.  Adam worked on Sunday so I got the girls ready for the early morning trip to the hospital, even putting them in some comfortable "day clothes" (as G likes to call them) so I wouldn't have to worry about changing them in the morning and they wouldn't look like they just rolled out of bed.  But really, who cares about that anyway?  We picked Adam up from work and drove to the hospital, got accessed, got bloods drawn for regular Monday labs, stayed while G went to sleep and rotated between me getting B breakfast and coffee while Adam waited for G to be done.  To the post-op waiting area where we talk with Pam until she takes one of us back so the other can stay with Bridgy since she's not allowed back there.  Ok, done.  On our way home.

As we were driving back, I get a call from the "unknown" number.  We know the routine well enough to know that it's the hospital calling and normally on Mondays, they're calling because of a problem with her labs.  The nurse practitioner tells us G's hemoglobin is 9 and needs to stay above 10 so the radiation will have the most affect.  So, they schedule a blood transfusion for Tuesday.  Ugg, Adam works and I didn't want to leave Bridget for an unknown period of time for radiation in the morning then a blood transfusion that couldn't be started  until 2pm.  Two of the three transfusions she's been without complications but there was the one where she peed blood right after and landed us in the Stanford ER for 5 hours.  We try to plan for these things as much as possible so I asked if we could do it that day (Monday).  Yes, but not till 2:30pm.  Great, I'll take it.  G and I drop Adam off at work in Los Gatos to get his car and drive home to Scotts Valley so we could drop Bridget off for her nap (with Adam there) and G and I could go back to the hospital.  This makes a second trip up to Packard but hey, we don't have to figure it all out when Adam was at work on Tuesday!

G was so amazing about driving back to the hospital.  We even stopped at Jia Tella's (a local favorite in SV) to pick up some food for lunch...and dinner just in case and got her a bubble gum ice cream.  As we drove up to LPCH, G pointed out the bushes in the front shaped like animals and said, "Mommy, I really like that beautiful animal topiary".  Apparently somewhere on the way, she learned "topiary".

Luckily our room was a single with a TV and lots of movies...oh yes, and a new toy from the gift shop for being so compliant in going back to the hospital.  (We have many bad habits we must break.)  Thankfully the blood was close to being ready when we got there and ran in over 2 hours (versus 3 the last few times).   No complications so back home we go at about 6pm and made it in time for bath with Bridgy, books and bed.  The rest of the week, Tuesday thru Thursday we were bumped up an hour earlier.  My sister took Bridget for the morning and off to radiation we went.  Adam ended up getting off work early on Wednesday to come home and pick G up for radiation so I could have a day off.  I was very grateful but felt a little guilty not being there the second to last day.  She doesn't get to have breaks so why should I?  But I got to enjoy my morning hanging out with Bridgy.

The last day was pretty awesome.  One of our radiation nurses brought a princess gift for G and a couple of radiation tech's had a pink sparkly tutu for her with a purple unicorn.  They really got to know her well after 6 weeks!  She even got a certificate for completing radiation.  I'm not sure if I want to frame this or burn it.  But for now, I'll hang on to it and let G decide when she's older.

G happily drinking her milk.  

28 radiation treatments COMPLETED!!!

Some of our favorite post-op nurses and crew!

A trip to the SC County Fair...
I'm not sure how we even fit this in but we made it to the Annual SC County Fair!  It is such a great time and we always make wonderful memories when we are there so it's well worth the effort.  After Adam and G got back from radiation on Wednesday, we all took off to the fair.  We had an awesome time and really enjoyed ourselves.

Loving this picture!

G riding "Mocha".

Bridgy riding "Shorty".

Face painting

Getting ready for her face painting

Loving her pose!

Train ride

Tea cups.  Luckily I have Adam to take them on these rides ;-)

Our weekend getaway....
We asked Gabriella what she wanted to do after radiation was over and she said, "I want to go to the beach".  Not wanting to go too far but having a little trip to look forward to lead us to Costanoa.  It's a beautiful place about 10 minutes from Davenport where you can bring an RV, camp, stay in tents, or stay at the lodge.  We had driven by a couple of times and thought it would be really fun to take the RV up for a couple of nights.  After unpacking from the week of radiation, doing some laundry and re-packing for our trip, we were off.  First stop was to visit Teresa at the Capitola Mall and pick up the "Giving Fountain" money that the mall so graciously offered us after seeing the article in the SC Sentinel.  This money will go to our Team G Cookies for Kids' Cancer Bake Sale to benefit childhood cancer research!  I'm honored that so many have gone out of their way to make a difference in the lives of these children fighting for cancer.
We convinced our awesome friends, Danielle and Pat with their two little ones, Brook and Nicole to come join us as well as "Uncle Johnny"...besides Ronnie, one of the girls favorites!  Gabriella and Bridget were so excited to see everyone, play at the beach, ride in the trailer (borrowed from our kind and ever helpful neighbors Toby and Julie), roast marshmallows, eat ice cream and just have a good time.
Bridget was so excited that she didn't nap the whole time we were there!  Needless to say, she's making up for it this week.  Once again, this was the weekend for Gabriella's immunity to drop so we were armed with the necessities.  Again we managed to slide by the infectious fever causing bacteria that will put us back in the hospital for at least a week.  I'm not sure how she is staying so strong and dodging the fevers but she seems to know her body pretty well and rests when she needs to.  Gabriella has been pretty incredible about washing her hands, drinking and eating.  I'm sure all of this is helping.

The gang with our blazing fire and roasted marshmallows.

Love these guys!

And these girls!  With Nicole and Brook,
who have each grown about 2 feet since we've known them.!

A little music on the lawn.

My "sweet" girls.

Last but not least...
We had another amazing meeting for our big Bake Sale for Cookies for Kids' Cancer last night.  Kellie, Angela, Stacey, Larisa, Mariela, Cara and Michelle...thank you ladies for being such a big part of this event...and of course everyone who has been working their butts off to help...Jen, Jesse, Ronnie, Mel, Cheri, etc. etc.!  I am really looking forward to this event and am just overwhelmed with gratefulness to everyone who is getting involved.  The more I see of these incredible children and the difficulties they face, the more I want to be involved.  It's been hard to not be a part of the dark side to childhood cancer.  We are trying our best to make it as positive as we can and keep so much hope for Gabriella but when you are absorbed into the world of pediatric cancer, you can't help but look death into the eyes.  Unfortunately, it's the reality that some of these children and their parents will face and it cannot be ignored.  We have to keep fighting.  

In Solidarity,

Monday, September 10, 2012

Things one never thinks about

...a title used from another cancer momma's blog but so fitting. 

G and I spent a Wednesday through Friday up at the RV park while Adam stayed with a sick little Bridgy. We were all going to go up together but since B was sick, we wanted to keep the girls apart...a heartbreaking task but we didn't want to take chances. G was able to get her chemo on Thursday just barely making her ANC count of 770.  The cut off is 750. We were hoping she was able to get her chemo so we can start giving her they GCSF of shots and hopes of boosting her immunity to fight whatever infection that Bridget has.  The doctor says the shot boosts her bacterial fighting ability but not so much for viruses.  For my basic knowledge, it boosts her WBC count and that works for me!  Trust me, Adam and I hate giving her shots but we know we must.  

Waking up Thursday was tough, as it has been on this particular day of the week.  G wasn't particularly excited to wake up early so I bribed her with a trip to the gift shop.  Whatever it takes.  We went to the Bass Center at about 8:40am to get G's pre-hydration started and labs drawn before we got to radiation for the usual procedure; get to the pre-procedure room, visit with the nurse and anesthesiologist, walk to the radiation room, get hooked up to the IV, monitor and blood pressure cuff, wait for the med to kick in so G can tell me when she's dizzy, lie her limp body down in the uncomfortable treatment position, kiss her on the head, walk away and hope that she'll be ok.  As I leave, the doors close and eventually the "Beam On" light starts flashing with a distinct hum from the machines.  This is when the treatment has started.  It's torture hearing this hum and watching the beam on light flash because you know that dangerous waves of radiation are entering my little girls body.  

I wait in the hallway for the sound of G's heart beating on the portable monitor that signals she's done with her treatment, walk down the hall with the nurse, anesthesiologist and my G asleep in the gurney, break off to get coffee so they can settle her down in the post-op, visit with Pam in the waiting area and wait to be called back.  She's normally still asleep by the time I get into the post-op and I wait for her to wake up.  The nurses in the post-op area have been so amazing.  We brought them doughnuts and they were pretty excited.  Once G woke up, I got the news that she made her counts and she was able to get chemo.  So, we were transferred to the day hospital.  We visited with G's doctors, Dr. Marina and Dr. Aftandilian and chemo was given at about 1:30pm.  SInce the cyclophosphamide is toxic to the bladder, she needs to get pre and post hydration and a medicine called Mesna (which helps protect the bladder) at the time of chemo, 4 hours and 8 hours after chemo.  The day hospital closes at 7pm so the plan was to send us home with Mesna.  Apparently it doesn't come in a liquid form but in a big pill form.  G has never taken a pill before so the wheels start turning as how I'm going to give her this after her chemo when she feels nauseated and is tired from such a long day.  During our waiting, we watched as one family left, another one came in and left, and watched the sun set from our window.  We played games, read books and watched a few movies.  Finally we were able to get back to the RV and work on taking the pill.  It took about 45 minutes, with coercing, bribing, crushing the pill, mixing it in frosting, putting it in milk.  She took about half the pill and fell asleep on the couch.  Hopefully that would be enough.  

Friday's thoughts...

I have an overwhelming sense of rejuvenation today as we complete chemo #7 (of 14), radiation day 24 (of 28) and total week 23 (of 42). I feel like we're over the main part of the treacherous mountain we've been climbing and working toward our decent. Those of you who know what it's like to climb a mountain know that the decent is just as important and still very difficult. Another amazing cancer momma told me that you tap into some incredible superhuman strength when you're child is fighting cancer. It's something you've never experienced before and you do it because you just want to make sure your child comes out OK.  You do whatever it takes.
I've seemed to tap into that strength but today I feel especially empowered. Maybe it's because we see a little glimpse if the light at the end of the tunnel, maybe because we have the feeling that G IS going to come out if this ok...we all are, but today I'm especially overwhelmed and touched by the outreach from our community. I'm almost on my knees with tears in my eyes from the outpour of support we've received today. I'm overwhelmed with how many people want to get involved and fight for these children and their families fighting cancer and I am so incredibly honored.  

As most of you know (and many of you have been heavily involved) we've been working hard to get this bake sale together and spread the word about childhood cancer awareness.  Being a part of the pediatric cancer world has opened my eyes up to childhood cancer.  To read, hear and see what these kids endure on a daily basis is heartbreaking.  Planning a bake sale is really nothing compared to what these kids go through every day.  It's the least we can do and if I can make a difference in my child's quality of life and the lives of any other child enduring these treatments, I will.  Last week, I received a call from Bonnie from Santa Cruz Sentinel who wanted to write an article on the bake sale.  I was happy to talk with her and rally some friends and their kids to take a picture for the article.  After long day at the hospital for G and a sick little Bridgy, we rallied the kids for the picture. With G feeling particularly shy that day and Bridgy not feeling well, I knew we weren't going to get them in the photo without me getting in it too...not my original plan but the article and photos were amazing and captured a moment in that I will not forget.  We got to have Charlie Cross in the picture, a Santa Cruz local who is a recent survivor at almost 5 years old and little warrior.  Momma Angela has been an amazing source of information and strength for me through this journey.   We were able to gather pictures of some of the precious kids who have recently lost their fight with cancer, Jack Bartosz and Tianna Valdez, and Liam Witt with mom Gretchen who founded Cookies for Kids' Cancer and were able to honor them by holding their pictures during the photo shoot.   

We came home on Friday and the girls re-united.  It was so amazing to see and Adam and I just basked in the moment.  Still being very cautious about every sneeze and cough, we were armed with our hand wipes and spray.  I had to switch gears into my business life in order to prepare for a small wedding cake and cupcakes for the next day.  Ugg.  This was an order I took a long time ago thinking we would be well done with radiation by this time.  I was tired but got through it.  Heidi come over to watch the girls so Adam and I could drive to Mission Ranch in Carmel and deliver the wedding cake/cupcakes.  We got a date night out of it so it was every bit worth it just to spend time with Adam!  Thanks Heidi!  As we were on our way down, I got a call from the wedding coordinator..."You were supposed to be here at 3...Guests are going to be here at 5:30...etc. etc.".  I calmly told her I spoke with the bride, we agreed on a time and I was on my way.  What I really wanted to say to this coordinator was that if she had any idea what we had been through lately and that she was lucky we were even going to be there. The bride was so incredibly sweet and I was going to get her her wedding cake!  Before I would have been as flustered as hell.  But now, there's not much that gets to me as long as my girls are OK, as long as my G's OK.  It's a great place to be.  I wish this wasn't how I got here.  
Adam and I drove up, ceremony still going on, set everything up and got out right as the guests started walking in.  It was like Cupcake Wars or something.  We then got to have a wonderful dinner, talk, laugh, relax and enjoy each other's company, which was much needed.  

Sunday was a clean up house day.  I got to visit with two of my BFF's (Brit and Steph) and their little ones who came over to the house.  The girls had a great time playing with their friends Addison, Samantha, Julia and meet the newest member of the crew, Gavin.  G was so upset when everyone left but we had to get ready for the final week of radiation.  It's strange to say to your children, "Ok, let's pick out our outfits for the hospital tomorrow".  I really wish I was saying, "Ok, let's pick out or school outfits".  

More thanks...

We are so grateful for the meals that are still coming in.  I can't explain how something so simple as a meal can lift such a large burden off our shoulders.  So, thank you for bringing us food.  

Thoughts on treatment...

As we were sharing our experiences at Camp Okizu, we met another couple who's child is post treatment 7 months from rhabdo.  The dad brought up the radiation and showed us a picture of his little boys abdomen where he was treated.  Redness, burns, blisters that formed were enough to postpone their treatments so his skin could heal then back at it again.  One thing that will scar my mind forever is the fact that treatment to the parents of a child with cancer is almost like child abuse.  I know it sounds so harsh but it is so real.  These treatments are made to practically kill your child before you can heal them from the cancer.  Being a nurse, most of the time we have to hurt to heal whether it be starting an IV, shoving an NG tube down someone's nose or placing a foley.  It sucks but you do it because you are trying to heal the patient.  It is just so incredibly hard to comprehend doing this to a child.  We are willingly giving her poisons in the form of chemotherapy, burns to her skin and organs in the form of radiation, drug after drug to "help" cure her, cutting her to find out where the cancer is, where it has gone, and if it's clearing, and scaring her little body.  Then, the treatment continues as they are exposed to more radiation via CT's after the fact.  And to think that sometimes these treatments don't actually work for some children.  It's absolutely mind blowing and there has GOT to be a better way.  

We were lucky enough to have Dr. Donaldson who advocated for the higher standard of radiation therapy for G.  This type of radiation focuses a higher dose on the tumor site and less on the normal tissues where the standard radiation will send the same amount of radiation to the whole area.  G has had redness and has a horrible time going to the bathroom.  She screams and cries every time she goes because it "stings".  This alone is enough to make you want to bang your head against the wall.  But luckily she hasn't had the burning and blistering that is more common with standard radiation.  I'm so very thankful for this.  I feel terrible for the other children who won't get this advocacy and have to settle with standard treatment.  

Here are the links to the Santa Cruz Sentinel article along with other paper's links that have picked up the article.  I'm very honored for the SC Sentinel to take such an interest in our story and share it with others.  I'm also grateful for the SCC along with Santa Cruz Community Media Lab for helping to bring awareness about pediatric cancer to our county.  It brings much hope not only to me and my family but to others that have fought the battle or are currently fighting for the lives of their child.  Without hope, we have nothing.  

Santa Cruz Sentinel Article

Mercury News Article

American Foundation for Children with Cancer

I4U News


Santa Cruz Community Media Lab Facebook Page

Tuesday, September 4, 2012

A weekend to reflect on and a big task ahead

As I write the title for this blog post, I realize the lessons we learned over the weekend which kept ringing in my head over and over..."live in the moment" can quickly fade away.  I never understood the meaning of this phrase as much as I have these last few months and have never tried so hard to live life by these words.

The weekend at Camp Okizu was one of incredible admiration.  I'm inspired at the other parents we've met and hearing their stories, knowing that they really do know exactly what we are going through.  I'm inspired by the individuals who started the camp over 30 years ago and kept it running strong.  I'm very inspired by these young adults who have volunteered their time and energy to be camp counselors.  These young kids were truly amazing.  Both Gabriella and Bridget were immediately taken by two of the young girls, "Squishy" and "Dory" (their camp names) and after the first play morning where the kids broke off into groups and the adults had meetings, the girls couldn't stop talking about Squishy and Dory.  (Funny about Dory...she's the one that says "just keep swimming").  Everywhere we turned, these young kids were there to help us get the girls milk, get our lunches, help entertain the kids while we got our coffee.  They were just incredible.

The first night, everyone was arriving at different times, getting their assigned cabins and settling in for the weekend.  We all stayed in little cabins with 4 bunk beds where each family would get half a room. The bathrooms and showers were across the way.  After dinner, we met our "roomies"...a wonderful family with a 6 year old who is in remission from Wilms Tumor, a 3 year old little girl and an 8 week old baby.  Yes, 8 weeks old.  Ugg.  They already felt bad because their baby didn't sleep through the night and I really didn't want to make them feel worse.  Ok, I hope this is worth it.  The first night, baby woke up a few times and Bridget didn't sleep well.  G slept like a log.  I think in my pre-cancer life, I would have been pretty frustrated with the situation but now, I think my tolerance level is significantly higher and my skin has gotten much much thicker.   When you deal with cancer, it's pretty amazing how it changes you.  Over the course of the weekend, we went fishing, swimming, did archery, shared our cancer stories, did crafts, cried our eyes out, went canoeing, cried some more, etc. etc.  We met some amazing people and like I've said before, I don't think we'll ever ever forget the people we've met through this journey.

The most apparent "discovery" Adam and I both came to realize is the affect this will have on our little Bridgy.  A good friend had talked to me about being the sibling in this situation, not getting all the attention, not getting all the gifts and wishing she was the one with cancer.  She actually first told us about Camp Okizu.  I knew this was going to be something important for us to realize and to watch for.  It's so easy to get caught up with the patient and all that's going on with G that the healthy one, Bridgy, can easily just slip by especially us thinking she might be too young to notice.  I knew I was going to do everything in my power to not let this happen   Well, the other week, it really occurred to me that this is affecting her.  She was having some ear pain so I took her in for a doctor visit.  Just over 2, she was so incredibly compliant with the O2 sat they put on her finger, taking her temperature and actually letting the doctor look in her ear.  Pretty incredible for a 2 year old but I realize she was enjoying this being all about her.  There have also been times where Bridgy would get a little gift while ooohhing and aaahhhing about the bigger gifts G received.  I would do my best to make things equal between the two concerning gifts but it's not always easy.  Bridget has been a key in G's well being and as much as possible, we are having her involved with whatever care is going on with G.  When Bridgy realized G wasn't feeling well, she would grab G's medicine from me, run over to her and start coercing her to take the medicine.  I think she knew that if G took the meds, it would keep her home more and Bridgy wants G to be home.  Radiation has really affected Bridgy and I know she is getting tired of G and mommy (or daddy) going to the hospital every day.  She has really been the glue that holds us together, makes us laugh and to watch her so innocently grow up in this immensely difficult situation is difficult to say the least.  But she is just an amazing little girl.  Even though she isn't physically fighting this disease, she is just as much of a fighter and will be as much of a survivor when this is all over.

After the second night of less than optimal sleep and the third day with Bridget not napping and G starting to wear out, we knew it was time to pack up and head home.  As we know, we play, we pay.  We have been doing the best we can to get G to eat, drink and wash her hands.  We've attempted such vigilance with Bridget but were unsuccessful.  I think she just wore out and last night, we knew a near cold was in our future.  Damn it.  Time to panic.

On to our panic episodes of the day.
Panic #1
Realizing Bridgy was wearing out and leaving for home still didn't fend off the cold bugs.  She ended up becoming sick this morning and woke up sneezing with snot flying out of her nose.  Ok, don't panic.  Breathe.  Just get through this week and keep the girls apart, hands cleaned, hydrated, and well slept.  We DO NOT want G to get sick and just want to finish radiation.  If G gets sick with fevers, it can put us in the hospital for an infinite amount of days, delay radiation, delay chemo, etc.  Plus her ANC is only 610...yikes!!  Remember anything under 500 is considered neutropenic and infections can come very easily.  Double yikes!!
That will be our big task of the week.  It breaks my heart just thinking of keeping the girls apart but we just want to get through radiation.  We were all going up to stay in the RV from Wednesday till Friday but it looks like G and I will be staying up there while Adam and Bridgy stay home to heal B.  At least we have some options.

Panic #2
Today as we were accessing G's port as we do the beginning of each radiation week, Brook the nurse was able to flush the line but not draw back any blood.  They were going to flush it again during the procedure and try to draw back.  Brook came out to let me know they tried re-accessing it again and had the same problem.  Ok, what now?  The protocol is to place TPA (a de-clotter used for new onset heart attack and stroke patients given within the first hour of symptoms with the major side affect of excessive bleeding) in the line and pull back after 45 minutes hoping the clot will come with it.  Ok, I've used this before and am familiar with the procedure.  Don't panic.  I was able to ask the anesthesiologist what happens if that doesn't prepare myself.  I pretty much knew the answer but had to get confirmation...try it again and if it didn't work, replace the line, which meant another surgery, longer hospital stay, more drugs, more risk of infection...delay, delay, delay. TPA was placed and 45 minutes they tried to draw blood.  No go.  Adam and I were trying as hard as we could to make a back up plan, to not panic, stay calm and figure out what our options were.  So 30 minutes more and we were about to try again.  Ok, don't panic, breathe, breathe and keep my fingers crossed.  Just knowing the consequences of a little thing like this is just exasperating and causes so much anxiety.  The nurses pulled the syringe back, pulled pulled, wiggled her arm, moved her arms up and down as we all held our breaths hoping we would get a blood return.   I went to pick her up and the movement somehow made the blood shoot out into the syringe.  Ahhhh.....success!  I can breathe again!!!

We dodged a bullet today...another one it seems.  I'm sure their will be more rough waters to reflect on but for now, we'll enjoy the moment.

And on we go....

The girls and their new little friend, Analiese.

Hanging on the deck.

Bridgy with her one shoe.  

Shooting bows and arrows. 

Say "Cheese"!


One of the founders, John and Bridgy hanging out. 

The girls new favorite counselor, Squishy.

G getting tired.  Not ready to go home but needing to!