Sunday, November 27, 2016

We're done with Interim Maintenance !

Woo hoo - we've finished interim maintenance!  I'm not really sure why it is called "interim maintenance" so I did what any person does when searching for answers; I googled it.  Here is the gist of what I came up with.

. Interim Maintenance Phase

As with the previous phase, interim maintenance aims to destroy any leukemic cells left in your child’s marrow or blood. This phase lasts about 8 weeks.
Your child may take the following medicines:
** NOTE - ANNIE did not get PEG for this Phase - I guess some kids do.  Remember this is the drug she's allergic too and she gets a replacement drug via a shot to the thigh.  Either way, she went 8 weeks without it luckily.

In my own words, IM is just another dose of chemo.  The difference with this phase is that the chemo is not as frequent.  So although she is taking a chemo pill orally at home most nights (6 MP), she is only getting IV chemo every other week.  The chemo is no joke though.  As I said in the last blog she's getting a big bag of methotrexate administered over 24 hours each time she is in the hospital.  Then we have to wait for her body to excrete it.  So the shortest amount of time you would be in the hospital is 72 hours from the when they START the MTX IV.  Luckily Annie cleared in time all four times (although her third round she was a little slow...)   IM started on October 6 and ended on November 19.  What happens while we are at the hospital?  Peeing.  A lot of it.  Annie is getting so much fluid with the chemo that she is wheeling that IV pole into the bathroom about every 60 minutes (she's actually pretty good at wheeling the IV pole around now).  And it is not just peeing and flushing.  We have to collect the pee every trip to the bathroom and it has to be measured and tested.  So there was pretty much always some form of collected pee in the bathroom...

So to sum up IM for Annie....

*  2 Spinals (with sleepy medicine and chemo)
*  4 doses of Vincristine (which has temporarily made her walk a little funny but we're told she will         get back to normal)
*  4 giant doses of 24 hour methotrexate (that big yellow bag).
* 12 nights at Goryeb (we've now been in most rooms.... 301, 305, 308, 309, 310.  We can actually even add 316 although that was when we were there 2 nights with Oliver and his broken wrist...)
*  Multiple doses of zofran (anti-nausea med) and leucovorin (recovery drug)


Special shout out to all the nurses at the Valerie Center - Trish,  Gina, Ann & Whitney and those on the 3rd floor who we are getting to know well too!  Karen, Rebecca (**my former student from PHS**), Laura, Tina, Tony.... just to name a few (plus the Child Life from the 3rd floor - Kristen and Jess ).  I'm sure we're forgetting some.  They are all super nice to Annie even when she's "not in the mood."  If you ever have to stay there, you're in good hands.
Annie and Trish heading to room 309 with the final big bag of MTX
Having fun with the Clown/Magician (she was scared of clowns in July, but not so much now - go figure!)


During our last stay at the hospital Annie had a EKG and an Echocardiogram.  Both in preparation for the next phase of treatment called Delayed Intensification.  It seems DI  is a combo of induction (the first phase) and consolidation (the second phase).  In layman's terms - it's A LOT of chemo and a lot of trips to the Valerie Center.
Some hugs for the therapy dogs.  Maybe their good behavior can rub off on Bear


Just some info from the last few weeks though.....

Annie was lucky enough to have a "wish" granted by the Daniel Galorenzo Foundation.  


The mission of the Danny G. foundation is "to raise money to help children with life threatening illnesses, giving them back what their illnesses have taken away.... hope, laughter and dignity."
The foundation purchased an amazing playset for our family.  If you happen to be considering a donation to charitable organization this season, please consider the Danny G. Foundation.  I continue to be in awe of people who have turned grief into something so positive, so selfless, so helpful for so many people.

Needless to say, everyone in the family (including the dog) has been enjoying the playground (look closely -he's in there)
Thank you Danny G. Foundation! Yes, Bear climbs the ladder to the top!


I feel almost weird writing this because everyone I know has been so generous, but if you are looking on how to help the Valerie Center you can donate toys for the Holiday Party.  There is a specific list but I was told they would accept anything that is new and unopened.

Lastly, this summer I joined the Team In Training program as a way to fundraise for the Leukemia & Lymphoma Society, and get some partners to run with.  Thanks for everyone who donated!  It's a great organization and I have met a lot of great people and heard so many inspirational stories. Anyone want to run with us?


We will update more in a few weeks as we head into the holiday season ..... and into  Delayed Intensification....
There are some strange people in Annie's room!


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Saturday, November 5, 2016

There's a lot of catching up to do!

 So Annie successfully completed the second phase of treatment, CONSOLIDATION, in September. 
During that process she had 12 erwinia shots, 4 lumbar punctures a.k.a. spinals (with sleepy medicine), 2 red blood transfusions, 1 platelet transfusion, 28 days of mercaptopurine chemo pills, 3 other types of IV chemo given over numerous days including the weekend, lots of tape (one of her biggest complaints!), press and seal and so many Valerie Center visits it's hard to keep track of.

Despite the intensity though, Annie  was generally happy, riding her bike, swimming (with no floaties - in the deep end) and playing.  In fact, aside from occasional nausea and fatigue,  you wouldn't really notice much wrong with her (aside from the obvious -hair - which incidentally is a thin layer of peach fuzz now).

Annie celebrated most her 5th birthday in the Valerie Center, playing with Kelly (the Child Life Specialist) and Oliver and Tich.  The center got her a huge ice cream cake  (and gifts) which was shared with everyone there that day!
Kelly (Child Life Specialist ) playing SLAMWICH with the kids at the Valerie Center

Happy 5th Birthday Annie


Her counts went pretty low (under 200)  at the end of September which caused a delay in the next phase called "Interim Maintenance."  Delayed initially from counts one week and then delayed another chunk of time due to a very strange rash (later diagnosed as Gianotti-Crosti) and a need for a red blood transfusion, Annie didn't start her first of four inpatient IM stays until October 6.  

During our inpatient treatments, Annie gets a spinal the day of admittance, a dose of Vincristine (a chemo drug) and a IV drip of Methotrexate that runs over 24 hours.  The goal is to have her excrete the drug in a certain amount of time. The levels of methotrexate are tested at 24 hours, 42 hours and 48 hours.  If she is under the required level at each of those timeframes she gets to leave after 72 hours of fluids (timed from after the start of the drug).  The effects of the methotrexate can be rough, so they give her Leucovorin ( a drug used as an antidote to effects of certain chemotherapy drugs, such as methotrexate) every 6 hours.  Annie hasn't had too many adverse effects.  Her skin actually bares the brunt of it and she has gotten some mouth sores, but otherwise has tolerated the drug fairly well.
Annie and "Ella" passing the time during an inpatient stay

big bag of methotrexate

Today we completed our 3rd round (of 4) inpatient stays.  I would say the novelty has certainly worn off about our days "living" at the hospital, but with only 1 more to go we can deal with it!  We also get a week off - no needed visits to the Valerie Center!  Perfect timing for election week/ Teachers Convention (teachers you know what that means!).  Still can't believe that it is November ....time flies.




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