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 work...to 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!

1 comment:

  1. Thanks for such a great write up. Couldn't have said it better myself.