Monday, April 29, 2013

Not bad news, BUT...

This isn't a post I've been looking forward to writing.  The results came in from the Mayo clinic and they did show the chromosome abnormality that was detected last year when Bela was first diagnosed.  It's an abnormality between the 1st and 22nd and is found only in leukemia cells.  This was a very sensitive test and some children don't have the "luxury" of having a "marker", such as the chromosome abnormality, to double-check to see if the leukemia cells are 100% gone or not.  

At this point what the doctor said is that they don't want to under-interpret or over-interpret, they don't want to under-react nor over-react.  It's not necessarily bad news. He's not jumping to treatment.  We are in a "wait and see" holding pattern.  He's seen other kids with this same abnormality that don't have anything else wrong with them, no signs at all of anything "off".  

The plan now is that they will monitor Bela more closely.  She will have another bone marrow biopsy within the next two weeks. They will be checking her marrow and blood more frequently now.

Dr. Z did say that he was very surprised because her post-treatment follow-up bone marrow biopsy showed no leukemia, another test they did sometime between January and February showed little to no chance of relapse, and her blood counts have been nothing but great, and improving.  Plus, she's had no fevers and is reaching all of her milestones right on time.  

This does not mean that the AML will come back but it doesn't mean it won't.  Dr. Z has stated to us more than once now that her type of leukemia is very difficult to treat.  It is very rare. As I was Googling it today, it was actually very hard to find information on her exact chromosome abnormality.  In fact, from what I understood, if she DID have down syndrome, the doctors wouldn't be worried at all about her having a relapse.  Now we just have to wait and be patient. UGH! That's the hardest!

So on one hand it's not a cause to worry and yet I find myself fretting all over again, just like about 7 months ago.  How can I live not knowing if, or when, the cancer may or may not come back? 1 month? 2 years? 5? 20? Never?  It's like this cloud over my head and it shadows everything at every moment, and I don't know if or when it's ever going to bring rain. 

Beto is very encouraging and positive.  We must continue to hold onto and trust in God and continue to believe in His goodness, His promises, and that Bela is healed.  This does not mean that she will have a relapse and right now all other signs point to very good health.  Please pray for Bela to continue to improve and to stay in remission.  This once again is drawing us closer to Him in prayer and making us mindful again of the thousands of children fighting cancer out there right now, and to not forget them and the more difficult battles they and their families fight every day. We feel very blessed that Bela is home and doing well now.  Thank you for all of your continued prayers. 

What's goin on

These two love to play together. 

Bela's met Scott before, but neither of them look too sure.

Out to lunch with great friends!

At the doctor's office.  Bela posing with her poster!

This dude hasn't taken a nap in 3 years! I had to get a picture.

Santi looooves Jack.  Bela's still not so sure.

She's a sneeky one.  That's a glue stick.

The signs say it all...

Our church's youth group held a fund raiser for World Vision with a  30 hour famine.  To raise money they asked people to put money in different jars with the names of our church shepherds and ministers.  The one who got the most money in his jar was our own Steve Hay, who had to kiss a donkey for "losing the bet". 

"There's still time.  I know you do this in Guatemala all the time!"

Such a gentle one with the animals.

Never a dull moment with these two.  Ian accused Beto of trying to steal chickens.


Who wouldn't wanna kiss this face???

Sunday, April 21, 2013

A "Poppy" Festival and a Sugar Fast

Let me just start by saying that when I go to something titled such as, say, "Poppy Festival", I kind of expect there to be, oh, I don't know, poppies!?

So we had planned and saved and were all excited to drive aaaaalll the way out to the middle of nowhere, aka, California desert, which has been made into some little cities.  Our car got tired on the way there because of all the hills, so I get to take it in tomorrow, but I digress.

The Lancaster Poppy Festival: "Don't expect to see any actual poppies" should be emblazoned across all of their souvenirs.  I was so excited to see acres and acres of fields of bright, orange poppies in all their wonderful California glory!  I guess now looking back I should've known: there wasn't any mention of full poppy fields on the event website. I was also kind of expecting there to be everything-under-the-sun made out of poppies: poppy bracelets, headbands, necklaces and earrings, poppy ice-cream, lemon poppy-seed muffins, poppy seed scones, cookies, cakes, and lolli-pops (poppy-pops, anyone?)  poppy-colored Crocs, poppy-bongs and poppy chapstick, just to name a few.

There was a lot to do for the kids though.  Carnival-like rides, petting zoo's, dog shows, a little circus, camel rides, and playgrounds.  There was an abundance of food and different kinds of vendors of all things imaginable, mostly stuff that's never actually needed.  It was pretty expensive, as festivals tend to be, but at least parking was free.  That was a surprise.  So while I'm glad we went yesterday, I'm not sure we'll ever go again.  So next on the list is a day-trip down to Carlsbad to see real live flowers, in fields!
One of the many rides Santi went on.

A 21-day Sugar Fast

Starting here is where I'll tell you a little bit about my sugar fast.  I saw just a quick headline online somewhere about a 21-day sugar fast, and I thought, Hmmmm....I'm trying to lose some weight, get in shape for bikini season (not that I'll ever wear a bikini again), this could be good.

I tried not to be too strict or stressed out about it because that's when the fast starts to control me instead of the other way around.  I did totally cut out certain things like sodas, chocolate, candy, ice-cream, cake, and of course, sugar in my iced-tea, etc. But it was hard to TOTALLY cut out sugar altogether.  There is sugar in EVERYTHING!  The obvious is fruit and juice with its variations, but there's sugar in even the healthiest cereals, yogurts, oatmeal, breads, and even condiments like ketchup and salad dressings.

   I am happy with how I did, and I feel a lot better physically and mentally!  I did let myself try just a few things here and there along the way, though: a sip of Beto's sweet tea from Chik-Fil-a, a bite of my sister's berry cobbler, etc.  In the end what I learned most is that I am not made to live without sugar.  If God made it, then the body needs it.  Now I'm not talking about going all out and eating all sugar all day everyday.  Of course in moderation.  Life is just "sweeter" (excuse the pun) with chocolate!  Especially the "at least 65% cocoa dark chocolate bar with antioxidants". 

Thursday, April 11, 2013

Friends: visiting here and there, plus a bike race

Fun with one of her former nurses who came to visit at home!!! 
Lovin'...she missed these girls!

We missed them too!

Beto's delicious fish!

I'm sure my Aunt Glenda's sorry she missed this!

Acacia showing us the eye she's about to eat!

Not a big fan.

Wonderful people!!! Bela got passed around a lot today.
revin' their engines!!!
Santi came in Second Place!
Santi watching a fellow racer getting interviewed for the news.
Bela loving on her old friends
She really seemed to remember her old friends and gave lots of hugs and kisses.
Group shot!

Just chillin'
Santi got to ride in Bela's place AND wear the professional's helmet!  This event was a pre-"pep rally type tricycle race between patients, a doctor, and Tony Cruz, professional bicycle racer.  The main event is Tour of Long Beach in May in which one team will be racing in honor of Bela and raising funds for Johnathan Jaqcues Cancer Center.

Mayor of Long Beach showed up.  

I also want to add her a huge THANK YOU to all who have prayed for Bela and our family!!! She is doing very well: "army crawling", waving, blowing kisses, saying "hi" and "papa" (figures), eating very well and sleeping great and on schedule, and not showing any signs of illness.  All of her blood work came back PERFECT yesterday.  Instead of hearing good, final news yesterday however, we were given another waiting period.  Her doctor sent her bone marrow to the Mayo Clinic for a very sensitive test to detect any chromosome abnormalities.  We will get a call sometime next week. Also, her spleen is still too big so we will be taking her for an ultrasound sometime next week just to make sure that her spleen is the only thing that's in there. We are not expecting bad news but it's still that nagging feeling that we're not "out of the woods" yet.

Monday, April 01, 2013

...and to summarize March...

Practicing for scaring people on our walk.

You know, just a normal after-dinner family walk, with Spiderman and three ninjas.

Ah! You scared us!

Grandma got dressed up but then decided not to go. Boo!

Whaaaat?! I thought pinatas were edible!  mmm...edible pinata made out of sugar...

I ate my pinata. 

Opening birthday presents

My birthday present from Santi

Bela LOVES Kevin.  She loves all her cousins but here you see such entertaining abilities.

You know, just a normal night at the Speaks' house....babies on the floor and children riding on a lion.  

Santi's favorite pastime: snuggle! Bela says "hhhhiiii"

Coloring Easter Eggs

"Ya-ya, give me some of your grass."  Easter grass, that is.

Acacia helping Santi gently place the eggs in his basket.

This was one of Mary's four attempts at capturing them during a game.  This one came out the most normal!

Easter kisses!
Her favorite face!

Our stuffed animals can do this. What can yours do???

March was a really great month! Just in our family we celebrated Santi's birthday, then Charles', then Kevin's, then mine, and my cousin Stephanie had a birthday too!  We celebrated Kevin's bday with the Britton kids' first ever pinata.  We also celebrated Easter, of course, which is my favorite Holiday.  Praise God that Jesus lives!!! We had a wonderful "Linner" at home with my uncle Bruce and aunt Romaine.    Within the next 10 days or so we should find out Bela's blood results.  Her spleen is enlarged so the Dr. ordered more blood to be drawn.  He said that it doesn't mean there necessarily is leukemia in her spleen, but that it could be scar tissue, or as a result of her infection and antibiotics, or a storage disease.  We are praying fervently of course that it isn't leukemia but also that it's nothing serious.  She is doing well.  She just got over her bout of having rotovirus and C-Diff infection at the same time.  She is going to be crawling here anyday now and is growing well.  Eating a lot .  Sleeping good at night and is a happy baby during the day.  Her blood counts, like platelets, red and white blood cells, and hemoglobin were all "perfect" as the nurse said last week so that is a good thing.  Thanks for all your prayers and Happy Spring!!! Woo hoo!!!