This  is a group that was touched enough by our story to band together to create a group that would create different projects to help out causes/families like our own. 

So for whatever a span of time they’ll be donating the profits of these Calendars to us. This is their first project and I’d like to see it succed and lead to bigger and better things for each of the 46 designers who worked on this project!

The Cost is $15.00 each and you can really tell most had a special thought when designing there page.

http://www.cause4design.com/ <- buy one today!

A special thanks goes out to http://www.graphicdesignforum.com/ for allowing this to happen! The support from the Online communities has been nothing less than amazing! May traffic shine on your sites

Nissa got card from a boy in the mail talking about how he has liked her since last year and he wrote her a poem based on the roses are red theme.  Nissa being the smart little whip that she is figured it out in 2 seconds flat… called him said thanks and the typical “see ya tomorrow at school”.

Then Ana yesterday came home talking about something similar… about how last week she got a candygram form a boy at school but didn’t put his name.  So we left it at that, she didn’t bring the tag and tossed it in the trash at school, typical forgetful Ana stuff.  But anyways back to yesterday, she said a couple girls told her that BoyX likes her and she turned around and here was this boy waving to her! So she waived back, turned around and went about her afternoon.  Then in her telling this story she’s says “I’m not ready for a boyfriend yet am I?”  I was in my office so Sara came down to tell me the story and she told me “I CAN’T HANDLE THIS ALREADY; I don’t want my babies to grow up.”

So the next couple days will continue to be interesting as Ana looks to find out more about this boy does not know. I have day dreams of her on a date seeing a movie expecting the boy to get his own popcorn…

On another growth note… one of my daughters got her first period 2 weeks ago… that was a desiaster as the other one was totally pissed off, grumbling ”I’m never going to frick’n grow, I’m never going to get my frick’n period and this frick’n sucks”. So Nissa is reading Are You There God? It’s Me, Margaret , by Judy Blume and once she’s done we’ll have Ana read it. The girls have already had “the Talk” and “the Movie” and we had a kit put together for when this day finnally came along.

We also met with a school vision specialist last month.  She was very impressed with our little girl, she did a great job of advocating for herself and was able to explain with great detail what her issues were. The plan is to get her to touch type so at somepoint we can get her an ultra portable laptop and she can take and do her homework on that.  today she had due a “wellness plan” for a class and I doubt I could have gotten away with that little she had.  But in the paragraph or 2 she would have a on page you could see where her eye’s would just give out and it was increasingly difficult to write more.  SO the idea is to have her on one machine that would work well for her.  Something useful for small hands and good battery life.
The other modifications have been working well… she does math homework sheets on 11×17inch paper! Vs. the standard 8.5×11 that would normally be used.  Most kids would have a couple issues with using something so different from their classmates but for whatever reason she just goes with it.  IN another post I’ll explain more of what’s going on with her eye sight and catch everyone up…

It looks like Ana will be starting Growth Hormones, so long as her Next MRI turns out well. She was really disappointed when she found that out… She wanted to start a while ago.  She wants and is ready to grow… All the test show that her body is producing what it needs it’s just not making it to the areas where it’s used.  So were going to see if an artificial source works.  Anniessa currently has a couple inches on her older sister.

If you’d like to read about the money issues follow the jump… (more…)

Sunday we started a test that will see if she needs hormone replacement therapy.   The test is an IGF-1, we get the blood draw on Thursday and I’m not sure the time line for the test results.

Wednesday the 12th, we have the appointments with the new doctor team at the University of Minnesota… We’re looking forward to meeting with them.

Thursday is the big day… Ana get’s her port removed and she is also having the mole on her face taken off as well. I’ll be sure to post photos of before and after

We are having a number of car issues so any additional help would be great!

the left side was Fall of ‘07 and the photo on the right was taken in the fall of ‘06

The last of the Tooth-Fairy
Ana Had 7 teeth pulled last month… Amazingly she lost no hair or teeth over the last year while on chemo. Teeth aren’t something people generally loose while on chemo but to be 13 and still have a good number of baby teeth isn’t common either.

Downtime while down for appointments.
Since St. Paul Children’s isn’t far from the Mall of America we find ourselves there to relax quite often.

Ana the Boxer?
Ana has found a most unsual passion… the sport of Boxing? She got the ok from the doctor but no head shots. Unfortunately we don’t have a good and regular afternoon we can get her to lessions. Hopefully after the holiday’s we can get a regular day down. But the owner of the Gym did give her a punching bag and gloves for her birthday and she practices on that.

Ana’s enjoying her summer vacation sleeping in till noon Her blood counts have been great lately and her kidney function has gone back up from where it was in March.

The worry some issue for Sara and I is that with her last chemo coming up our security blanket is going away. At this point we know the chemo is keeping the tumor from growing, and the mass that’s still in the MRI’s it’s unknown if it’s scar tissue or the last bit of the tumor that’s being resistant to treatment. The time between her August MRI and her November MRI is going to be a tough wait through. As of her last MRI in May it’s “stable”, it hasn’t grown or shrunk anymore for a while. However after the chemo cycle is over it could grow again if it’s anything other than scar tissue. 

She still has some intermittent double vision issues, hopefully we’ll find out more about that on Friday or when we have the next team clinic (which should be in early august with her next MRI).

I’ll come back next weekend with the latest in what the next couple months will be looking like for us…

On a side note Ana will be 13 this month on the 27th, so I’m thinking the date of chemo is golden. 

Last week at chemo we found out that Ana’s kidney function had gone down even further.

So her dose of carboplatin was cut in half. It’s also enough of an issue that her fluid intake needs to be doubled. The hope is there be no long term damage to her kidney’s.

At this point we’re just pushing water like crazy and Ana is upset that she can’t drink pop except in smaller amounts.

We have chemo again April 20th and 2 days before that another kidney (GFR) test. In the mail today we got the date of her next MRI & clinic visit.

Thank you for your thoughts and prayers!

Peter

At the moment she has staff at both Childrens Hospital and St. Lukes confused as to how she does it.  Normally when those Hemoglobin numbers start getting into the low to mid 7’s they keep going down and you get into  spot where she was in January needing blood.  So everyone was reading the paperwork for another transfusion this last week and amazingly her counts jumped back into the Mid range for being “ok” which was 8.6 on her hemoglobin counts and her platelets went from 62 thousand to 120 thousand or so.  And the second count where they went up were counted by hand which I guess is much more accurate than the computerized method.

The tooth fairy’s gonna cost me…

Needing this second count this week nearly made her miss another dentist appointment which she was suppose to have last month but her platelets were to low… The risk of bleeding while at the dentist was to great.  But Children’s has been pushing us to get her looked at by a dentist because of what the chemo drug she’s on does to teeth. So they told us to get a light cleaning above the gums and exam. Which went fine… Other than about 7 teeth that need to come out she’s in good shape.  Those teeth are baby’s that are being broken by the incoming adult teeth.  Which the dentist would have been more than happy to take out IF her platelets were in a more normal range.

More extra tests…kinda.

last Month Ana had her bi-monthly GFR test which measures kidney function and last month she was just at the low end of normal so Wednesday we have to do another test this month…  Which means a couple days in the Twin Cities again.  We wont find out the results of this test till Friday.

Lastly for today…

When Ana was asked by the nurse who took her blood on Friday for the CBC count at how her counts go back up they way they do… Ana Replied “it’s the 2 bags of microwave popcorn I eat every day”

BTW, She would eat 3 if we let her…