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Thursday, July 22, 2010 - 9:29am

The results of Hailey's MRI indicated the tumor has grown again.  We're confirming numbers, but it looks initially like another 20% growth since January.  I guess the good news is the ventrical appeared to be down to normal size, but the tumor itself has grown and at this point we think it might be as big as or bigger than it's ever been since we were first diagnosed. 

We are gathering feedback from different sources around the country again and making a decision by next Wednesday as to whether we give this current chemo (Vinblastine) another 3 months, or switch to something else.  It will come down to all the same options we narrowed it down to a few months ago before we started on this treatment, all of which have downsides and unknowns.  There is a chance the treatment we're currently on could still work.  There have been cases on this drug where there was initial growth, and then shrinking after a long enough period of time.  We are gathering information from the head of the study on this drug to determine if the growth we saw is in line with what has been seen before in other eventually successful cases.   

In the end, we are back to gathering feedback from multiple sources, adding it all up and weighing it against our situation, and making another crapshoot of a decision!  

Tuesday, July 20, 2010 - 9:42am

Another MRI tomorrow.  Will post results when we have them...

Tuesday, June 15, 2010 - 7:09am

I know we haven't updated in a while, but things are fine on this end.  Hailey has adjusted to her feeding tube and she fully recovered from her venticle surgery.  We're just using the tube for medicines and supplements...she still eats her regular stuff as always.  She's doing well all things considered.  We continue to do chemo treatments every Thursday.  Next MRI will be in July and will hopefully give us some indication that the chemo is doing it's job.  We will also be able to confirm that the ventricle procedure worked as well. 

Faith finished kindergarten a couple weeks ago!  She did great.  We got lucky in getting an incredible teacher for Faith's first official year in school.  It made her experience that much better and was a big reason why Faith loved it so much.

So we're off to our summer routine.  Let the fun begin...

P.S.  We went to Bay Beach last weekend and Faith and Hailey both went on "The Scrambler" and LOVED it.  We couldn't pull them off it...especially Hailey. I see rollercoasters in our future (real ones...not the one we have been riding on for the last 3 years!)  And by the way, June 6th was the 3rd anniversary of Hailey's diagnosis.  It's been 3 years already!  Feels like 30.

Sunday, May 23, 2010 - 11:36am

We're going home!  Leaving Madison in a little bit. Hailey is doing well.  She's healing and still getting used to the new feeding tube, but appears to have bounced back to herself mentally and physically.  Thursday we will get out the stitches and it sounds like we will be able to resume chemo Thursday as well.  So in a few short days we'll be back here again, but we are very very thankful for how this all turned out so far.  We will not find out until our next MRI whether the ventricle procedure did what we needed it to do.  The feeding tube will help us immediately, however, as while we work on trying to get her to take things orally, we'll be able to give her the growth hormone medication every day now (and any other medications she will need) and we will begin giving her good supplements to her daily nutrition.