OneAna.com

Sorry for the lack of updates.

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. 

I spoke before how we almost felt we were on automatic for dealing with chemo and what was Instore for dealing with everything.

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

We’ll things have been a complete repeat of last month… One day she’s down LOW LOW low on her blood counts then a couple days later there back to decent levels.

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…