Birthday Love

I celebrated my birthday yesterday.  I love birthdays!  What else can you ask for besides a day filled with warm wishes, extra hugs, kisses and spoiling from your loved ones, and your favorite mom-cooked meal!

After a sleep in, I woke up to fresh coffee with eggnog, and birthday greetings from my adorable family!  Nathan was wearing an over sized shirt that went past his knees.  It took me about half an hour to read it since he wouldn't stand still!  It was part of Stefan's present to me, along with my own t-shirt!

Here are the photo's:

After opening my presents, we went for a walk to Newport village for coffee.  Charlotte actually walked quite a ways by herself, which is a huge milestone! 

Another cute pic:

In the afternoon, Stefan had a doctor's appointment with his endocrinologist.  I listened in on speaker phone as it was during the kids nap times.  It was all good news!  Stefan's testosterone levels (along with all his other hormone levels) are excellent!  I said, I'm sure he's got enough testosterone to spare!  So, overall, no concerns about his pituitary function, and they will check again in a year!

Then we were off to dinner at my moms (or Tootoo's as the kids call her!) for my favorite meal, spaghetti with meatballs, caesar salad, garlic toast and ice cream cake!  Yum!

And another pic: 

A great day!

The last long day!

Even though it's been a long week, we are giddy with the excitement that we will be in the maintenance phase in a couple of weeks!

A summary of our week
On Monday we went in for Charlotte's chemo and bloodwork.  Even though her platelets were on the low side, no transfusion was needed, we just needed to be weary of a bleeding nose.

Sure enough, Thursday morning Charlotte's nose started bleeding and didn't want to stop.  I phoned the clinic and they said to come in.  They started her platelet transfusion right away.  They also did bloodwork, and it was pretty likely she would need red blood cells on Friday.

Friday turned into a rather long day with the additional blood transfusion (that makes 16 total transfusions now, 7 platelet and 9 red blood cells).  Because both the chemo she was getting and blood transfusions can cause allergic reactions, they had to space them apart.  We were into clinic at 10, and out by 5.  Luckily we had a couple visitors drop by to play with us, my Mom and a friend from high school, Elaine.

Friday was our last scheduled long day!  So that night I was feeling pretty good.  I say scheduled, as we will probably have hospital overnight admits at some point over the next two years (any time Charlotte gets a fever), but it was the last planned long day of treatment!  Her lumbar puncture days during maintenance should only be half a day.

We are back in Friday for the last day of treatment in this phase.

What exactly does maintenance mean?
I imagine that is a question on a lot of your minds.  Well, we will hopefully start December 7th, but it will be dependent on Charlotte's counts, she could get delayed a week.

For two years, we will be into the clinic every 28 days for chemo (vincristine).  Every third cycle (a cycle being each 28 days) she will get a lumbar puncture (IT methotrexate).  For the first 5 days of each cycle she will get prednisone.  I've heard the prednisone can be quite mood altering similar to dexamethasone.  She will get mercaptopurine (what we call 6MP) every night.  She also gets an oral dose of methotrexate 3 times a month.  (she will also still take her septra (pneumonia fighting antibiotic) every Sat/Sun/Mon)

The biggest thing about maintenance is that Charlotte will have an immune system!  We will be out of the bubble!  She can resume all normal activities.  The Dr.s did say we might want to avoid the swimming pool on a Saturday afternoon.  But you get the drift!  We will also be very cautious avoiding exposure to chicken pox and other contagious diseases.  Any fever still means we go to emergency.

So, Christmas will be pretty special this year (yet again I suppose, as the last two were pretty special too for other apparent reasons!).  I can't wait to be able to go to some holiday festivities with my little family!

So, even though Charlotte is still not quite herself, needing extra cuddles, and still not eating really well, we can't help feeling a bit joyful, seeing the light at the end of this tunnel.

Stefan update
Because I get asked all the time - Stefan is doing pretty good.  He is still seeing his occupational therapist twice a week, and they are making plans for him to start his gradual return to work. I will keep you posted once a plan is in place!

I wasn't very good with pictures this week - so I'll post this portrait of my beautiful little family made by Elaine:

War wounds

Charlotte has been doing pretty well.  She didn't have much of an appetite over the week.  But she has been making up for it here and there.  Last night she did really well with some roasted chicken (with 'jam', aka cranberry sauce) and mashed potatoes and gravy.  I've also been trying my best to get pediasure into her when I can.  She maintained her weight over the week, so I take that as a good sign.

She was also throwing up when she would wake up in the morning.  We will keep up with her two doses of odansatron (anti nausea med) for the week I think, as that seems to help.  We haven't had any puke episodes the last two mornings.

She got a blood transfusion when we were in Friday.  That makes number 14.  6 Platelet transfusions so far, and 8 red blood cells.  Thank you to everyone out there who has ever donated blood in their lifetime!  She also got a lumbar puncture, which was number 10.  I believe she will just get one every 3 months in maintenance, so only 8 more to go!

This is the last weekend of the Cytarabine, or ARAC.  Which is the one that we have to drive in for Saturday/Sunday/Monday.  This is the chemo drug that really seems to effect Charlotte's appetite.  I think overall though, she has fared better then most kids with eating and chemo side effects, so we aren't complaining, just have to get through this week.

When we are in clinic for chemo, she gets 'accessed', which is what they call it when they put the IV into her port.  Then the lines can be used to administer fluids, chemo, or to draw blood.  When we are doing the 4 days of ARAC, she stays accessed, so she comes home with her IV in, or 'butterfly' as we call it.  Amazingly, it doesn't seem to bother her.  Here are some pictures.

close up - you can see why we call it the butterfly.

her lumbar puncture bandage

Just like daddy

So we saw Charlotte's neurologist on Monday.  I explained to Charlotte how we were seeing a different doctor, one who looks at her brain - just like daddy's.  It went okay.  We met with the resident first.  Started off with history, lots of questions and Charlotte showing off her skills (ie. knowing her shapes, counting into the teens, 'spelling'.  She will spell out a word, and for each letter she will tell you what sound it makes and words that start with the letter - my smartie pants).  At this point, the resident made the comment "so, why are you here".  Which were sort of my sentiments too.  And then he saw her run.  Or lack of running if we want to be entirely accurate.  But please don't tell Charlotte that - as she thinks she is 'superfast'!  To be honest, Nathan is faster then Charlotte.  So, yes, Charlotte has some gross motor delays.  The neurologist came in and checked Charlotte out.  After a few tangents, the point that she had been seeing physio last year, and they closed her file because she was progressing so well, it was determined that these delays are likely due to the effects of her chemo and the fact that she hasn't been well the last 9 months and hasn't had the opportunity to work on her gross motor skills.

For example, I'll list you the side effects of Vincristine (which she has already received 15 times, and will get 26 more):

• Constipation
• Pain or cramping in the abdomen
• Jaw pain, problems chewing
• Pain while urinating
• Blurred vision
• Feeling dizzy or lightheaded
• Trouble Walking
• Hands or feet feel numb, weak or tingle
• Muscle cramps or muscle weakness
• Hair loss
• Low levels of sodium in the blood
• Seizures
• Weak or hoarse voice (rare)
• Problems with swallowing (rare)

Isn't chemo fun? (note, this is just the effects of ONE of the 12 different types of chemo she has/will get)

So, it's really hard to tell where Charlotte would be with her gross motor skills if she hadn't have got cancer.  Now, the MRI is really just a diagnostic tool, they might see something that might explain why she has a delay (or they might not).  But, it's not going to provide a 'fix it strategy'.  So, with that being said, the neurologist said they would just leave it up to our oncologist.

Well - that leads us to today.  Charlotte's counts were good enough to start her second phase today.  We saw Charlotte's oncologist - and he want's to go ahead with an MRI.  It will occur when this phase is done, probably before Christmas.  Fine - I've resigned to it.  I also asked if we should be starting physio again, and they will likely get a physiotherapist down to the clinic to see her.

Charlotte did awesome today.  She had to fast again for her lumbar puncture.  We were there at 8:15 so they could start hydrating her for her Cyclophospamide.  She didn't get her lumbar puncture done until 10:30 though.  After a 10 minute cry for food, she was content to cuddle, and I was pretty happy to have Charlotte cuddles for the 90+ minutes!  Then we had a busy day of some serious playing, some treehouse and snacks (or picnic as Charlotte likes to call it).  We packed up at 5 to head home.

So, we have another long weekend of driving to Children's hospital every day for chemo.   rough summary of our month:

• Saturday/Sunday/Monday (10th/11th/12th) - quick trips to Children's for chemo (ARAC)
• Friday (16th) - in for lumbar puncture (which means fasting till 10:30) and ARAC
• Saturday/Sunday/Monday (17th/18/19th) - quick trips to Children's for chemo (ARAC)
• Friday (23rd) - longer day for Vincristine and PEG-asparaginase
• Friday (30th) - Vincristine
• oral medication at home (6TG) until the 22nd, and possible extra visits for blood transfusions

I apologize for the longer post which is full of details - these are more for my records and the couple people who want them!

Charlotte continues to amaze me!  She cracks me up all the time these days, and I'm loving seeing the magic of everything through her eyes.  She is non-stop chattering, and her little voice can only be described as 'happy'.  I'll leave you with a couple pics of my little superhero in her newest 'shark' hat and her cape!

Surprise, Surprise

We were supposed to start the second half of this phase on Friday, but, surprise, surprise, we are delayed again.  Charlotte's neutrophils were only 0.2.  As a result, we are scheduled for bloodwork again Thursday with a possible start Friday. 

To avoid becoming bored, we have a followup appointment Tuesday with the neurologist for Charlotte.  I'm curious what they will say, as I think Charlotte's development (especially her speech) has taken off.  We will keep you posted.

Charlotte loved Halloween!  She was a cancer zapping fairy princess, and Nathan was an adorable duck!  She made it to 3 houses and then wanted to go home.  She was pretty excited about the night though!

She has also lost all her hair again, it happened pretty fast.  Once it started to fall out, it would just come out in clumps.  Kissing her head was like kissing a cat. 

Cancer Zapping Fairy Princess

Nathan enjoying the fall leaves - he was non-stop giggles!

Charlotte sporting her newest hair style!