Today was a short and easy clinic visit for Alexa.  She has been doing really well, being a 12 year old and just having a great time of it.  Today we got news that while her end of treatment is August 10 because she has her last clinic visit on the 8th and thus starts her last cycle of chemo and steroids technically she won’t be done with chemo until her last dose of steroids the morning of August 13th. So an extra few days but nothing to get all worked up over, it will be great to not have nightly chemo.  I’m not sure what either of us will know what to do with ourselves!

As for clinic news, she has grown nearly 1/4 inch which brought up a sore subject for Alexa, her full grown height.  She has it in her head that she wants to be 5’9″, well.  That’s not going to happen, of course her pediatrician said when she was a toddler that the tallest she’d reach would probably be 5’6″ to 5’8″.  Today Dr. Chaffee told us that because she is now in the 50th percentile for height (after spending it in the upper 90s on up most of her childhood)  it is highly unlikely, though having a tall mum does work in her favor for some reason.  So now I have a hormonal, teary and now steroided girl who is heartbroken.  Hopefully she will reach a height she is comfortable with, I think that if she wants to pursue kickboxing a more average height my be an advantage.  I’ll take anything at this point to help her feel better about it.

So now back to schooling, crafting and reading for the girl, February’s clinic visit brings another spinal tap, her second to last one!

 

Lastly I wanted to give a heads up to everyone in and around Concord, NH.  There is a blood drive in the making, in Alexa’s name, with the Red Cross here in Concord at some point in the next few months.  So stay tuned for more info, Alexa and I will be there volunteering and talking with people so they understand and appreciate just how much of a gift their pint of blood is.

Alexa had her monthly clinic appointment today and an LP which kicks off her 4th cycle of maintenance!  It’s exciting to see the light at the end of the tunnel, this cycle runs until late February when this cycle is complete she will have TWO cycles left before end of treatment. Just more happiness and excitement around here!

The big news of late is the birth of our newest family member who was born a week ago Monday.  Alexa has a new cousin, a girl named Olivia who is beautiful and perfect and this happy big cousin is very excited.  This photo of the two girlies was taken yesterday while we were visiting.

Thanksgiving was fantastic, she had a wonderful time as always and got lots of snuggle time with Grampy.  This week her Make A Wish wish granters visited her, they haven’t seen her since Summer 2010 so such huge changes for them to see in her.  They brought her some gifts from Scotland which she loves and after reading and talking about Scotland and what to expect she is becoming quite excited for the trip.  They will start scheduling and booking everything in April so we have some time yet before really seeing what’s ahead.  She is quite interested in seeing lots of haunted spots and magical places as well as a growing interest in the Picts and their history as we follow new archeological findings being discovered lately.  so we’ll probably be checking out new glimpses of history too.

As for her appointment today, she is perfect and healthy.  Her height and weight have stalled for a bit, which has always been typical of her this time of year.  She has been working on getting over oral medicine anxieties as well as anxiety that bubbles over on LP days.  Today she decided she would only take half of an Ativan which is a quarter of her anxiety-calming regimen on these LP days.  She was still loopy but more coherent and managed the entire day with no anxiety, nausea or crabbiness.  Success!  Of course the big help today was the clinic’s Ipad which she LOVES, especially the piano app.  I thought this would be something wonderful to have in our anti-anxiety arsenal until someone told me how much they cost. Eeeps!  So, pass on that but maybe one day when the prices drop even more we’ll look at getting one because she has great fun with them.

So, tonight starts the next round of steroids.  She’s feeling a bit sore and loopy still from her procedure however she’ll rest and lay low for a couple of days to recover.  Tomorrow we are off to the eye doctor for a check up and new glasses but then home again to rest.

Happy Holidays to everyone who still checks in here, next update will be end of next month so getting it all in early!

 

until next month…

Today Alexa headed up for her monthly appointment.  As it landed early in the month we’ll be back up in 28 days at the end of the month, so she has two clinics this month.

She did really well, managed her anxiety quite well and was rewarded with a trip to the craft store to spend some of her birthday money. Dr C was glad to see her all nice and healthy.  She told us that this winter is no different from last year, just because she is in maintenance doesn’t mean she isn’t at any less risk for lower counts and hospitalization for fever and neutropenia. crap.  I guess I thought she’d be at less risk.  What we have to watch is exposure to sick people.  So letting family and friends know that I will remain as rabidly protective of her as I was earlier in her treatment.  If you are even suspicious that you may be sick, stay away.  I’ve had my fill of hospital stays and I know Lex has as well.  If she catches a cold it knocks her counts down very low, which is what happened last month when she caught a mild cold.  I cannot give her the usual immune boosting goodies as it’s contraindicated for her treatment, so please.  Help keep my girl healthy this winter!

Her weight and height are holding steady, looks like the growth spurt has slowed temporarily.  She’s back on steroids for the remainder of the week, much to her disappointment her Halloween candy has been put away until late next week.  Her diabetic tendencies while on her steroids means her diet is very strict during steroid time, so no candy.

Despite the 13 1/2 inches of snow the day before Halloween she got to go trick or treating with her cousins and had a great time.  She dressed as an Egyptian Queen and was lovely as always.  It was a detour from her usual macabre costumes but I think she just needed to glam it up a bit this year.  She is already hard at work planning next year’s costume, she thinks maybe she’ll find some inspiration while we are in Scotland next summer for her Make A Wish trip.

Ten more clinic visits to go!  I had thought 9 but realized her appointments run every 28 days so she squeezes in an extra visit.

Until next time…

Twelve years ago I was blessed with this incredible girl, today she is twelve years old and so excited to be twelve years old.  I am excited she is 12 and that thanks to modern medicine, miracles and the positive beliefs and prayers from all of you, we are celebrating her 12th year with dozens more birthdays to come!

Happy Birthday Alexa!!

Well, today’s routine blood draw didn’t go off without a hitch.  Her new visiting nurse is her former LNA from CHaD! She had troubles getting blood from her port so we had to drive up to Dartmouth today and have Rich do her blood draw.  While there Alexa looked on with glee as I got a flu shot and we headed home.  Rich just called with the CBC results and it seems Miss Lex is neutropenic, ANC is 481 and WBC is 1.7ish.  Unexpected for me but apparently this happens and as she had been sick a couple of weeks ago the nurse surmises that perhaps the virus bumped her immune system down.  So, my nerves will be on edge tomorrow as she attends a nature class at Audubon with a bunch of other kids. She’s good about gelling, and it’s only for 1 1/2hrs and I believe outside so a trip to the library after and home again for birthday supper and we’ll be laying low until her blood draw in a week.  In the meantime she is off all her chemo.

We had a new twist today, Alexa had her 12 year well check with her pediatrician.  It was (sort of) nice to be able to have something with a remote sense of normality.  Dr P has not seen Alexa since the evening before she was officially diagnosed a year and a half ago.  I think it did her good to see how well the girlie is doing, she was VERY up to date as was the nurse of Alexa’s treatment, I was quite impressed.  I’ve always loved her ped, which is why we make the drive up north to her and have never switched to a local dr.  She has always been so wonderful with Alexa (who is now two inches taller than her!).  She measured in today at 1/4″ taller than a week ago so now she’s 5ft 1/2″.  We also found out after a quick exam that she does not have a fungal infection, so no more meds.  hooray!

So now she has one week to go until she is 12 years old!  She is very excited, I only wish we could give her a nice celebration however finances have taken an unexpected hard hit thanks to needing 4 new tires and car inspection and now an unexpected loss of income….so I’ll be lucky to make the car payment this month and feed this kid hopped up on steroids.  At least I had the foresight to get the basics for a family birthday gathering, it’s more than she got last year due to feeling poorly and low counts so keeping it positive.

Thankful for her health and to be celebrating another birthday, the rest will work itself out as always.

So another month down, ten months to go!  Alexa had her monthly appointment this morning and it was a relatively quick one. Blood draw, an iv push of Vincristine and her required flu shot.  Dr Kim called and left a message that her counts are looking good, right where they want them to be, and that one of her liver function results was a bit high and that apparently it was running a little high last month too but they are not concerned and will not change her chemo regimen.  So apart from a fungal infection courtesy of her steroids, which she got meds for today, and a bit of a cold she is doing great. She measured 5′ and 1/4″ so holding steady this past month and her weight as well.

Now she looks forward to her birthday in just under two weeks and Halloween!  What a difference a year makes with this girl!  She is healthy once again, full of energy and ready for trick or treating (modeling her wig for her costume in the photo) and a proper birthday celebration without all the worries of low counts, low energy or anxiety/depression or nausea.

She is homeschooling and having a great time.  We are getting her into the local homeschooling community, she joined a bookclub here in town last week and is one of four kids ages 12 to 14 in her particular group.  She had a blast and is thrilled to be a part of a group who all seem to have similar tastes in books (must be the age).  Next up is some classes at the Audubon and, cost dependent, archery classes with the local hs group.

Until next month

September down,  eleven more appointments to go before end of treatment!  Today was a long day, her lumbar puncture was pushed back three hours so we hung out in the clinic and visited with everyone we haven’t seen in a month.  We also ran into a few familiar faces from CWS!  So this month’s check in:  She has grown just over 1/4 of an inch, so she is now 5 ft 1/4in (woohoo!).  Healthy as can be and doing brilliantly.  She got through the LP with no issues, though we were worried when her blood sugar really crashed and she was getting highly irritable by 2pm (who wouldn’t!).  We managed to get home about an hour ago and she has crashed with her ipod on the couch. The good news is that she only has four more LPs in her treatment, she is very excited about that.

We finally got her photos from her June photo session with Flashes of Hope.  This girl is gorgeous and they used one of her photos for their fundraiser invitation.  I’m sure it will sink in tomorrow, right now she is just very much an 11 year old and very *whatever* about it.

We’re back from a fun-filled Labor Day weekend at Camp Winning Spirit! I have a few hundred photos I am going to work my way through in the next couple of weeks as this week we hit the ground running. Today is our relatively slow day (slow for Lex, I am doing a ton of laundry, cleaning and passport searching (fifteen zillion storage containers and two passports somewhere in there!) so we can get hers renewed and both of ours photocopied for Make A Wish. We don’t leave on our trip until August but they are on us to get everything in order so feeling the pressure!

As for the weekend, this was our second year at Winning Spirit and what a difference a year makes! For Alexa she was stronger and healthier so was determined to have as much fun as she could fit into the long weekend. Once I got there I had a great time, I’m still struggling with anxiety and some relapsed agoraphobia so the thought of going to spend a few days with people I don’t really know terrified me.  By Saturday morning I was thinking I must have been crazy to not want to go. Last year I wanted nothing to do with anything cancer related, I think it was still too fresh for us. We had a great time last year but this was a *club* I did not want to be a part of, even if all the members were so wonderful.

This year was definitely needed to turn my perspective around and get us out into the world. We got to know many of the families, had a great time reconnecting with old friends and staffers that Lex just adores as well as meeting new faces and making new friends. The weather cooperated and it was a GREAT weekend, she was wishing it lasted longer!

So without further ado, some glimpses of the fun and hilarity (and achievements!) of our weekend….

Laughing with (or was it at?) Douce

Fun with Douce and ZZ, I only wish I had a clear shot of Douce sitting on her knee!

Sunday she decided to tackle the climbing tower, this was a HUGE deal given how it went last year.  Her counselor Eric gets full credit for this, he just put the idea in her head Saturday and by Sunday morning she told me she as going to try it. So here we were Sunday after canoeing with a few loons (the birds )…

Already ahead of last year, she got up more than a couple of feet and hung out a bit.  Unfortunately her arms were just too tired from canoeing so she got nearly halfway before having to come down.  Still, it was an accomplishment!

Eric and Eric’s shadow

She then topped the climbing wall experience with sailing lessons, which she loved.

DUCKS!

Heidi and Helga (or Beth and Berta)

Monday brought another attempt at the wall with added incentive waiting at the top, courtesy of Berta

YEAH WARRIOR PIXIE!!!!

Chocolate waiting at the top! Congrats Lex!

Thank you Berta!

And a huge thank you to Eric

It was a fantastic weekend and we are ready for CWS 2012, she has new goals she is thinking about and I have to admit I better start pulling out a few goals too.  She is recovering today, all of the activity has left her muscles very sore so she has been treated to nightly massages to get some of the spasms out. We are walking in the Childhood Cancer Lifeline 5k Run/Walk on Sunday to raise money for CCL who are to thank for our wonderful weekend (and much more!) so we got to talking about next year’s 5k (as well as serious sightseeing through Scotland) and along with a big need to strengthen her leg muscles we are going to start a 5k training program together.  She is not interested in running the 5k next year but it will be my goal, so I have a lot of work ahead of me.  Now that I’ve written it here for all to see have to see this through.  If there are any locals who want to run with us next spring/summer I could use the company and motivation!  I need to find a place to do this through the winter too, that is 12 yr old girlie friendly as well.  She wants to have stronger leg muscles to really participate in the family games next year, her legs ached so much and her running just isn’t what it should be so she wants to change that.

We head to Dartmouth tomorrow for a long day of clinic visit and a trip to painfree for an LP, I need a new incentive or reward to get her through the dreaded LP without a meltdown…we have enough Webkinz in this house! I’ll update the visit tomorrow at some point.

and a p.s…I have several more photos of her weekend coming, I just haven’t sorted them yet.

Today was Alexa’s monthly clinic day, thankfully a short day consisting of blood work and an IV push of Vincristine. She is looking, feeling and doing wonderfully, Dr Kim and all the nurses remarked on how great she looks. She measured at JUST a hair under 5 feet tall. She is SO excited! She is almost there, we bet within a week or two she will be at the 5ft mark. Today is also the one year mark to end of treatment. We can see that wonderful light at the end of the tunnel!

So with catching up news, she has been having a great month. She had a blast at musical theatre camp which thankful fell during a week when temps and weather were perfect. We have the family picnic on Sunday we are looking forward to and Camp Winning Spirit next month as well.