Monday, July 26, 2010

$12,000 donated to Motts

Lisa gave the money raised from the BLASTnb event to her doctor today during our clinic visit.  The event raised $12,000 for Motts and $4,800 for Rainbow Connection. 
$12,000 and look what word is to the left of Lisa's head!!!!

Next steps are still unknown.  Lisa did not qualify for a trial at Sloan Kettering and the slots for the St. Jude protocol were filled.  I've asked the doctor to waitlist her for St. Jude.  There is a new protocol that may open at Motts soon and the doctor thinks would be good for Lisa, unfortunately it could conflict with our big family vacation to Topsail so we are not sure what will happen.  Once  the study opens, the doctor only has 7 days to get Lisa enrolled and scans done, the protocol would have to start by day 12, so this could be a bit tricky to work out.  And, sadly, with all these studies, there is no known cure, no real statistics as to what works best and no guidance on what to hope for.

So, as always, we continue to pray and hope and try to remember to count every day as a blessing and live life to it's fullest.

Monday, July 19, 2010

Cancer is not invited!

Sorry it’s been so long since our last post. We’ve been trying to settle into summer and, as Mike said, have a Blast! The kids got their wish to stay at Camp Dearborn for a few days with their cousins. We’ve spent plenty of time at the lakehouse tubing and playing in the water (so much time that the kids are complaining and actually begging not to have to come here any more!!). We’ve taken in three great firework shows, a special event at tiger stadium involving food, face painting and exploring the dugouts, and gone to the local waterpark. We’re hoping to head to MI adventure the end of this month right before we drop the kids off for a week at camp and plan to head down to Topsail, NC for two weeks in August.

Lisa looks great and seems to be feeling fine. She’s quick witted, sassy and most observant of the bunch. She had her first sleep over with a friend last week and she loved it. She’s grown up a lot in the last year and now hits the water with no fear. She definitely seems stronger than she has in the past and is able to do things like run and jump and play on the rope swing over the water. She is insistent that she has babies “growing in her tummy” and in the past two days has told us repeatedly that the police will be coming to pick her up and take her to the hospital to deliver her 100 babies. She then informs me I will be a grandma and asks me if I want a girl baby or boy baby to help take care of; she’s chosen a girl for me…one with blond curly hair who is really cute. Speak of the devil, Lisa just came into my room to ask if my alarm went off because that is when the police are coming. I’m not sure what started this little fantasy and while it’s very cute, it freaks me out a little bit…I certainly hope nothing is growing in her tummy….not 100 babies nor 100 cancer cells! The other thing that makes me feel a bit anxious is her complaints every once in a while about her legs hurting and her tripping phases. Those were the two tell-tale signs that something was not right when we first discovered the cancer.

It’s hard knowing that while the treatments did well and have bought us more time we really are just waiting. At this point, given the type of cancer and the small amount that was showing at last scans there is no protocol that we can put her on. We even investigated Sloan Kettering and St. Jude…nothing…no one has the next steps, or a specific treatment plan of what to do to keep the cancer at bay. We just wait to see what will happen. Given our experience last winter, the waiting period will most likely not be long. We see the doctor again next week and they will discuss the best next steps.

The other kids are doing great. Maranda has gone tubing and on the rope swing and had no pain or complaints. The doctor said she could even go to the amusement park so long as we didn’t get too crazy. Thomas and Chrissy are having fun hanging out with their cousins and playing in the sun.

So, for now, we just go about living life and having fun. Our goal is to enjoy summer and each other and not think about cancer; cancer is not invited to this party!