All Good

I'm sorry I did not update earlier on Stefan's MRI result.  As you can imagine, I was on pins and needles up to the MRI (which was on the 26th).  Scanxiety is the jargon used to describe this feeling - quite common in the cancer crowd.  I was the emotional one on Scan day, Stefan is cool as a cucumber.  Go figure.

We will typically make a bit of an afternoon of it.  Stefan's MRI was at 11, I met him with Nathan just after at Granville island for lunch (Charlotte was with my Mom).  Then we headed over to the cancer center for our 2pm appointment.  Thankfully we didn't have to wait for long, and the first words out of the Doctors mouth were the ones I wanted to hear - no change!  Whew. 

Oh, and speaking of MRI's, we got the call this week from Radiology at Children's to book an MRI for Charlotte.  Doesn't that feel like eons ago that Charlotte was put on the waiting list for an MRI.  I did a quick call back to let them know that Charlotte is now an oncology patient and they will touch base with our oncologist.  I believe the MRI is on hold for now.

So, after Stefan's MRI, we went home to celebrate.  I finally started to feel somewhat normal after dinner and we went for a walk with the kids.  Charlotte treated us to a couple firsts - first time for her on a 'big' swing, and she also went up a couple stairs by herself! 

This has been the typical joys for us the past couple weeks.  Charlotte has been doing fantastic.  And since she's been feeling well - her development picks back up and she catches up for a couple missed months!  So, we have been really enjoying our active and chatty little girl!  Nathan is bringing us lots of delights as well - he's walking now (albeit wobbly), loves to eat, and has shown us he can have a bit of a temper!  He is quite the personality, and I can't believe he will be turning 1 in a week.

We were given another gift today.  We were selected by the Gaby Davis Foundation as one of their families.  It was so nice to be picked, and to meet Tanya Davis - a remarkable woman.  I have been reading Gaby Davis's story all week, resulting in a lot of tears.  We were really touched by her story and the amazing work that this foundation has been doing.  I really hope that I can give back and hopefully help out with this charity when things get less hectic for us.  It was a great way to end September - Childhood Cancer Awareness Month.

Part of their gift was a bike for Charlotte and a wagon for the kids.  We went for a walk tonight and Charlotte was SO excited!  The whole trip (which we had intended to go out for a half hour, but Charlotte insisted on longer), Charlotte was giggling and saying "I love my bike" the whole time!  Here is a snippet:

And a picture of the whole crew:

So - BIG thanks to the Gaby Davis Foundation for their gifts and the wonderful work that they do! 

Childhood Cancer Awareness Month

Did you know that September is Childhood Cancer awareness month, it's also Leukemia Awareness month.

In honour of this month - I'd like to share a video, some facts, and a poem.

I found this video through a facebook contact, a fellow cancer mom, I think it's worth watching and is an accurate portrait of our life.

The following facts came from the Childhood Cancer Website:

• There are about 10,000 children living with cancer in Canada today.
• Each year, about 1500 cases are diagnosed.
• Because of significant advances in therapy, 78% of these children will survive 5 years or more, an increase of almost 46% since the early 1960's.
• More than 70 percent of children diagnosed with cancer become long-term survivors and the majority of them are considered cured.  However, long-term effects of surviving the treatments for childhood cancer can affect these children's futures.
• In the early 1950's, less than 10 percent of childhood cancer patients could be cured.
• In Canada, childhood cancer remains responsible for more deaths from one year through adolescence than any other disease; more deaths than asthma, diabetes, cystic fibrosis and AIDS combined.
• Childhood cancers have close to a 75% cure rate, with leukemia leading the success charge with close to 90% overall cure rate.

Following story copied from PLGA Foundation:

I Hope

By Carol Baan

I hope you never have to hear the words “Your child has cancer”.
I hope you never have to hear “The prognosis is not good”.
I hope you never have to watch your child prepare to undergo chemo, have a “port” surgically implanted in their chest, be connected to an IV pole, look at you with fear in their eyes and say, “Don’t worry Mom, it’s going to be okay.”
I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the “cure” you pray for slowly take away your child’s identity, as they, lose their hair, become skeletal, develop severe acne, become barely able to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to stay in the hospital for weeks at a time, where there is no privacy, sleeping on a slab, your face to the wall, where you cry in muffled silence.
I hope you never have to see a mother, alone, huddled in a dark hospital corridor crying quietly, after just being told “there’s nothing more we can do”.
I hope you never have to watch a family wandering aimlessly, minutes after their child’s body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope, and fear overwhelm you.
I hope you never have to see your child’s head bolted to a table while they receive radiation.
I hope you never know what it is like to take you child home, (grateful but so afraid) in a wheelchair because the chemo has damaged their muscles, 35 pounds lighter, pale, bald, and scarred, And they look at you with faith in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to face the few friends that have stuck by you and hear them say, “Thank God it’s all over” because you know it will never be over.
Your life becomes a whirl of doctors, blood tests, and MRI’s, and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words “The cancer has returned”.
And your friends become even fewer.
I hope you never have to experience any of these things.  Because only then will you understand.

Carol Baan
March 12, 2003 ©

Terry Fox Run

We made it to the Terry Fox Run Sunday as a family.  Stefan had intended to go with Nathan, but we weren't sure a) if we would be out of the hospital and b) if Charlotte would be up for it.  But, as I said in my previous post, Charlotte is a little superstar.  We just did the 2km at the Port Moody run, and Charlotte managed to walk just over half of it herself!  I was pretty proud of my "just got out of the hospital after chemo" little girl!

While it would have been nice to be at the hometown run and meet up with a number of people we knew would be there, I think it was a smarter idea to stick with the smaller Port Moody run, less germs and less busy so as not to overwhelm Charlotte.  And - we would have missed this photo op:

The Port Moody Cheerleaders wanted to pose with SuperChuck!

"I'm coming I'm coming"

Mr. Smiley pants

Bestest Birthday Ever

We were home for Stefan's birthday!  While that in itself would have made it the bestest birthday ever, add a rugby game, steak dinner, curious george theme decor, and two happy kidlets, and it was one of the best days this household has seen in awhile!  (Yes I realize bestest isn't a word - I think it should be though!)

The hospital stay overall went pretty well.  Thanks to Mike and Pete for bringing by dinners, and the Bruce family for the gift drop off for Charlotte.  Also to my parents, Rebecca and Erin for helping out with Nathan!

Wednesday, while Charlotte's chemo was running, she was very low energy and looking a little green.  I braced myself for another long week.  She doesn't want to 'miss out' on anything though, so we still made a number of trips to the playroom.  We ended up curling up on the play mat and Charlotte dozed off for a little nap.

Thursday Charlotte perked right up and things were looking pretty good.  Friday we were moved off the oncology ward as they were so full, and since Charlotte was just post-hydrating, we were moved to another ward.  We took this as a good sign, and it probably meant we were the healthiest there.  It was not unlike the time Stefan got the coveted 'bed in the hall' at Royal Columbian.

Stefan's bed in the hall - 5 days after his first surgery - December 22, 2010.

We met a really lovely resident Dr. who had had leukemia when she was 7.  It was pretty reassuring to meet this survivor and dream of our little girl all grown up and healthy!  She had some really nice things to say too; "it's harder on the parents then the child", and "you have a really great family - I can tell you are really supportive of each other.".

And that leads us to Saturday.  We knew first thing in the morning that we would be heading home based on her methotrexate levels.  But we didn't actually leave the hospital till about 1pm.  That gave Charlotte and I time to make a couple stops on the way home so we could hold an impromptu birthday party for daddy.

And party we did.  We had Stefan's sister and our niece over along with my parents.  BBQ'd steak up for Stefan, and Charlotte had picked Curious George for his theme, so a couple decorations and hats were in order.  Charlotte had lots of energy and was super silly and fun!  We are all still on the high of the happiness that filled our home!  Charlotte has some oral medication while at home, but we aren't back to the hospital until October 5th - looking forward to the little break!

Today we did the Terry Fox Run - I'll post some pics from that in another post.  Meanwhile....

Nathan gets to enjoy the playroom too!

Charlotte's playroom nap.

meat = happy Stefan

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!

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!

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