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: