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Tuesday, September 11, 2012

The Best Things about BC Children's Hospital

We are back in the hospital.  The extra little break for Charlotte did absolute wonders.  I have had my happy girl back for the last few days and it's been so nice to have my silly, happy little hero laughing around the house!  She has also been eating non-stop and managed to pack on 1.7 pounds in 5 days!  Woot woot!  All her blood counts were up, with her neutrophils at a very impressive (and record for us) 1.8.  Hopefully this all points to a quick hospital stay for us.  Our goal is to be home for Stefan's birthday on Saturday - wish us luck!

Tomorrow Stefan has to get blood work done.  For each of his MRI's, they inject him with a special dye, and he has now had a few.  The blood work is to check how his liver and kidney's are holding up after all this dye.  His MRI and our follow up with his oncologist is on the 26th.

In anticipation for our hospital stay, I came up with our list of the 8 best things about BC Children's hospital:

1. The toys - this is no doubt Charlotte's favorite thing about Children's hospital.  They have a pretty killer play room in the clinic, and a not too shabby playroom on the third floor!  Pretty much any toy you can ask for!  The first thing Charlotte will say when we tell her we are going to the hospital is "Play?".


Charlotte in the playroom.

2. The coin machine - they have this set of machines not unlike the ones you see at your local grocery store where you insert a quarter or loonie to get a toy.  Whenever the kids get a 'poke', which can be a lumbar puncture or getting their port accessed, they get a coin.  For a while Charlotte would always choose a ninja, and garnered quite the collection of ninjas.  Her latest favorite was stick-on earrings, and today she picked a little dog.

Charlotte's ninja army


3. You can wear comfy clothes - no doubt my favorite is the totally accepted attire of yoga pants.  In fact, you may even be mistaken for someone important if you show up in your pj's.

4. The top people mingle with the rest of us - one day we were in the clinic playroom when we noticed a guy walking around.  He obviously worked there as he had the hospital id around his neck.  There are often staff around though whom I don't really know their role; spiritual adviser, social worker, media officer, you name it.  The guy commented on how cute Charlotte was and was smiling at her - I couldn't blame him.  After he had left, one of the nurses explained to me how he was the head of BC Children's hospital, and that he likes to spend time in the clinic getting to know the staff and patients.  That is pretty awesome in my books.

5. The Child Life Specialists - These amazing people are there to help children cope with being ill.  As far as Charlotte is concerned though - they are there to play.  They rock, let's just leave it at that.

6. The Volunteers - There are some pretty amazing volunteers at Children's, from Red Cross volunteers who have brought me many a tea or coffee on hospital days, to the Child Life volunteers who have played with Charlotte while I try to grab lunch or run to the pharmacy.
I've seen and met angels wearing the disguise of ordinary people living ordinary lives.  ~Tracy Chapman 
7. The staff - I realize I have used the word amazing in the last two bullets, but I have to use it again - third time is the charm right?  The Doctors and Nurses are.....yep, you said it - amazing (perhaps someone will want to get me a thesaurus for Christmas)!  They are thoughtful, respectful and knowledgeable.  On a couple occasions, they have even taken good care of Stefan and I too, like Tylenol for my migraine today or the day Stefan passed out in the clinic.  We are pretty lucky to have such a fantastic, compassionate and talented set of people at our hospital!

8. They know kids - It makes a huge difference having a facility entirely catered to kids.  The staff knows what's needed, like if a child needs an extra minute to calm down before getting some medicine or if she hasn't slept all night, and is finally napping, they hold off another half hour before checking her temperature and blood pressure.  The child themed decor, furniture, and readily available tv's with kids shows is pretty good too!

Friday, September 7, 2012

still home, but climbing up

Well, we are still home and treatment has been delayed once again.  Just when I think we can predict the next step, there is always a change in plans.

If you read the last post, I had kinda hit my breaking point on Sunday.  Things started to slowly get better the rest of the week though.  My mood has a direct correlation to Charlotte's mood, and when my happy girl started making her appearance, I cheered up.

The blood in her diaper continued to Tuesday and I ended up calling the oncologist again.  It wasn't blood accompanied with a bowel movement, but it was a separate discharge with blood that would come out separate from a bowel movement.  Charlotte was in obvious pain every time she would have a bowel movement or this discharge.  It was a rough couple days watching her go through that and not being able to do anything for her.  Talking to the Dr.s when we were in on Thursday they aren't sure what the cause could have been.

Charlotte slowly got back to her normal self this week, each day getting a bit better.  It took her about 2.5 weeks to recoup from this last dose of methotrexate.  This has me on edge in anticipation of her next dose.

She was supposed to get her last dose on Thursday (I had previously said Wednesday, but we ended up getting an extra day off so we could have some family time with our favorite travel family).  And since her blood levels were all okay on Friday when I had taken her in, we really weren't expecting any interruptions.  So, we were very surprised when we found out her neutrophils weren't high enough to start treatment.  They had been 1.46 on Friday, which is the highest they have been since she was diagnosed, and were 0.40 on Thursday.  They said that's pretty normal, and I guess it might explain the pooping issue.  I'm pretty thankful for the extra break, as I just got my happy girl back, and would like to enjoy that for a couple days!  We are back in for blood work Monday for a possible start Tuesday.

We had Michelle, Ben and their adorable kiddies here for a couple nights.  They helped brighten up things around here!  We don't let too many people into the bubble, but they are like family!  Charlotte had tons of fun with Nick, and Nathan loved flirting with little Emmie!  Nick has a lot of empathy for a 3 year old and was really great (read: patient) with Charlotte.  Michelle and Nick even joined us at the hospital and got to check out the cool playroom and see how brave Charlotte is.  I can't tell you how nice it was to hear Charlotte's laughs throughout the house as she was finally feeling better and had a couple of her favorite playmates here!

A couple pics....

Enjoying a picnic at Buntzen!
For those who wonder why there is often a soother in Nathan's mouth - we can call it a plug!

Nathan with his girl - "hey, I'm having a moment here"



Charlotte and Nick enjoying some quiet time
Success - photo with everyone looking!




Sunday, September 2, 2012

the trifecta

oh how I wish I was about to talk about horse racing....

no such luck.  We had the super special trifecta today, a puke in the car, diaper explosions (poop for Nathan in the crib, and pee for Charlotte), and ended the day with some blood in Charlotte's diaper.  A call to the oncologist on call and it's likely just a small tear on her bum, nothing to worry too much about, but if we do get worried, call back and they will do a blood test to check her platelets.

What, me worry?  I think I'm getting an ulcer.  My fear of getting sick has made me a hypochondriac.

Charlotte has been out of sorts all week.  Friday I brought her into Children's hospital as I was SURE she needed a blood transfusion based on her low energy levels and the fact she could hardly hold her head up.  Nope, I was wrong, her levels were fine.  Of course she perked up as soon as she saw the playroom.  Maybe the real problem is she is just bored to tears of being home and playing with mom and dad.  I don't blame her.

Nathan seems to have developed an allergy.  We think it's a food allergy, so just trying to weed out the likely culprits.  It's a rash on his back.  Poor little guy.

It's been very difficult watching this disease take a hold of my little girl.  She has been irritable, low energy, and, the only word to describe it - is sad.  Every day I think, 'tomorrow she'll be a bit better'.

Needless to say, It's been a looooong week.  At the end of each day Stefan and I just give each the look of "whew, we made it".  I tell him, 'at least if we have to do crazy, I'm glad it's with you'. 

We looked at the calendar, if everything went according to plan with no more delays, we would be done by mid November.....we are pretty sure we are going to get some delays though.

I don't know how we are going to do another 3-4 months of this.  Hanging on.

I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much.  ~Mother Teresa