We made it out of Philly with very little traffic while Claire was safe and sound!!! We are exhausted from the long day, from living in the NF world and from the 7 year long roller coaster ride. These days are not easy even when there is a good outcome. There is the pre-appointment anxiety, the events of the day and the emotional highs and lows that are truly draining!!!! Even with staying in the most positive of spirits, it takes its toll. It's like that movie Groundhog's Da...y and you never stop reliving the same day, over and over. So you try to find the silver lining and cling to it because the 'what-ifs' are too plentiful and there are so many that have it worse. It is hard to truly explain what living with NF is like. But we will decide to choose to see the good in today's appointment and go with that because Ella is not in need of treatment or surgery at this time and we are still just 'watching' for now. So today's results revealed that her old gliomas that were treated with chemo a few years back are still stable!!! The new spot found at the September MRI has grown just a bit but not enough to warrant doing anything about it. The scan also revealed the glioma in her C-2 spine has only grown slightly (and that just might be interpretation). There was new spongiform found in the spine that we will watch and some other spots scattered around the brain that were not taking up dye. All in all she is good but we are not moving to 6 month or yearly MRI's yet. We will be going back in 4 months to recheck all of it. We also have to go for an EKG and Xray for some other issues that were noticed but we'll do that over the next few weeks. Even though it is hard to keep finding new spots to 'watch', we are full of gratitude for all of our many blessings... including her health, our family and friends. It would be IMPOSSIBLE to get through these days without you!!! Thank you so much!!!
We're here!!!!! No problem getting in and in honor of the Eagles win... We paid for THREE lucky cars behind us on the Walt Whitman Bridge. Were here so early... The staff aren't even here!!!! Now lets keep our fingers crossed for a smooth drive home!!!
Oh my goodness friends!!!! Take THAT facebook!!! Thank you so much everyone... without even being able to tag I am currently at $480 raised today!!!! I think the # to beat is $700 so far... I am almost there to earn our team an extra $1000!!! That's an extra $1000 to find a cure to NF!!! Just about $300 more should do it!!! We can do it!!! Only problem is most of my friends over seas are probably asleep!!! That shrinks my friend pool considerably. 🤔🤔🤔 If you are so inclined to help a sister out... Please do so using this link! https://my.cupids.org/TerriWilson
I am at $320 raised so far TODAY!!!! If I raise the most in Philly by midnight tonight our team gets $1000 added to our totals!!!! That is more money to fund valuable research!!! Please now is the time to donate!!! Thank you so much!!!! Much love!!! https://my.cupids.org/TerriWilson
PRAYERS PLEASE!!! So tomorrow Ella goes back under sedation for yet another MRI. With finding the new growth at the last scan and monitoring the tumor in her neck/spine... this MRI has me shook. And as if I wasn't anxious enough... we have to deal with the Eagles mayhem in Philly and I have to try to do my best to get back to Claire's school before 6pm!!!! Wish us luck... we will be there from 6am til around 4p... It will be a LONG day!!! Prayers, jokes, well wishes and positive vibes are all encouraged and appreciated!!!
You know I would be there for you if you needed me!!! I need you now... We have a chance to snag an extra $1000 for NF research! I have to raise the most $$$ by midnight to claim it... nothing earned up to this point counts towards this, so if you would like to help me raise the most today, I'd greatly appreciate it!!! After all it goes to finding a cure to help Ella!!! Every little bit helps!!! $5, 10, 20... Please, please, please!!! I am begging you!!! https://my.cupids.org/TerriWilson
The Bowling for a Cure event was a success!!! We raised $1472 to make our current total for this cupid run over $11,000 so far!!! All goes to research to find a cure for NF!!! Thank you so much to all that came out to the event, our basket donors and event sponsors. Leonard Law Group, LLC. And Integrity Automotive. We are so grateful!!!
How about this for a TBT... OMG!!!! I can't stand it!!! And little Claire at the end... "and I thank you!" In tears!!!