Mike here, Lisa continues to do great. She's gained a couple pounds (41.5) and has an endless appetite these days. This is a picture of her helping me start up the sprinklers the other day. We all had a great Memorial Day weekend at the lake. Maranda even got up on water skis for the first time. Woohoo! Lisa had a routine CT scan yesterday but other than that things have been event-less and just about back to "normal" or as close as we can get these days. You can't tell from this picture but Lisa's hair is growing back. Thanks for checking in.

Happy 11th birthday to Tom

Tom turned 11 today and was very happy with his gifts, especially his new bike!

So Far So Good

Lisa went for check up with docs today. She did great with the blood draw. They got it in one poke and collected 12 tubes (thank goodness they only need a few drops in each!). Lisa got a little anxious before they stuck the needle in, but once that part was done, she was fine. I have to admit, I got a little woozy with her on my lap and a full view of the blood coming out. They assured me I wouldn't be the first parent to pass out...geez, thanks.

Doctors are pleased with her progress. They say we are not in the clear yet...but are very impressed how much of the disease is gone given what she came in with a year ago. Most kids still have active sites even after the treatments, so at this point Lisa is ahead of the game. Yeah.

There will be monthly check ups for the next year and scans every 3 mos. She is on maintenance drugs for the next year to help rebuild her immune. She is also starting Accutane which is an acne medicine, but in now being used to help fight neuroblastoma. Studies show that Accutane encourage immature neuroblastoma cells to stop dividing or to die.

They are still hoping there is a way to get her onto an anti-body study. It is a painful procedure and requires 3-6 different weekly stays at the hospital but has shown to be helpful in fighting NB.

So, things are going well and I try to stay in the present or very near future. Looking too far forward makes me uneasy because I know what our other neuroblastoma friends have gone thru and I know that approximately 40 percent of high-risk stage 4 patients relapse, usually within the first two to three years after diagnosis. Although some of these patients can be brought back to near remission, fewer than 20 percent of these patients are expected to survive for longer than five years. Those are tough numbers to swallow. But I continue to have hope and try to stay grounded in reality....none of us really know how much time we have left, so we can't spend our time wondering "what if" we need to spend our time living life at that moment.

HOPE

Mike, Lisa and Thomas were at Golden Pond with Grandma. Maranda, Chrissy and I were trying to figure out how we wanted to spend our girl time together tonight when the phone rang. It was the Pollard family inviting us to the ACS Relay for Life walk. It had totally slipped my mind and it was the perfect way to spend the evening.

We went up to the park and bought luminary bags for Lisa and my mom. We met up with the Pollards and enjoyed walking thru the park and listening to the music. The Luminary Lighting ceremony is my favorite part and while I enjoy staying for the whole thing, the girls were ready to leave and getting restless and cold.

We were standing in front of Lisa's luminary and I was offering up my last prayer as the ceremony continued over the loud speakers. Just as I opened my mouth to tell the girls we could go, they announced the next performers. The pianist was Thomas' counselor from two years of summer camp. We had just recently been trying to figure out a way to track him down. I looked at the girls told them who it was and that we needed to go say hello.

It was wonderful to catch up and felt a little bit like a divine nudge from above....it's been well over a year since we talked, yet there we all were at the same place, same time and with everything going on I was able to catch his name being announced over the loudspeakers. Life is mysterious, but life is good!

One more Picture... Lisa and I [dad] stopped in a dollar store and among the cookies and doughnuts she selected were these sun glasses.

A picture is worth a thousand words

Wow...we almost feel like life is back to normal...if there is such a thing. We had a lot going on last week and the pictures say it all.


Last weekend Maranda and I went on her class trip to Chicago. We enjoyed many sites including the Medieval Times dinner which served generous portions of food all to be eaten with your hands.











Thomas, Mike and I joined his teacher at the Turnaround Achievement award luncheon and teared up as he received his award.



Thomas, Christina, their cousin Rory and their friend Cassie all made their First Communion this weekend.


And Lisa...well, she just keeps going and going....she has a lot of energy and really is enjoying being outside...she asks to go for walks daily.



So, for now, all is well. Next week we will have follow-up appointments with her doctors and determine if there are any next steps. Right now, we're hoping for a carefree summer doing lots of fun things to make up for last year.

5:00 Shadow

We see hair!!! It's faint...but it's there. Lisa's eyelashes started showing up last week. This week she has tiny, tiny hairs on her head and parts of her eyebrows have reappeared. I keep wanting to scrub the smudges off the back of her head and have to remind myself it's hair. Yeah!

We're all doing well and staying healthy. This swine flu thing is a bit disconcerting, especially now that the kids' school closed. It just reiterates how precarious things can be....Lisa still has a suppressed immune system and any flu would be devastating to her system at this point. So, we are making sure everyone washes their hands thoroughly and keeps their hands away from their face. Other than that, we are enjoying the warm weather and making sure that Lisa is slathered in sun screen because her skin is more sensitive after her bone marrow transplant.

We continue to pray and think positive and make the most out of life.

Friday, 5/1

Quickie update: Antibody Therapy... out. Their isn't enough antibodies to go around it seems. That leaves just the Accutane Therapy and that's a little ways out. As of this moment we don't have any appointments, not even blood tests, for a couple weeks. Wow. What will we do?

Yesterday I took Lisa to UofM to collect stem cells. Collecting those from Lisa involves surgery to place a large temporary line in her leg, then on to the Apheresis Clinic where she's hooked up to the machine for about 3 hours. Her blood is drawn out of the line and the stem cells are automagicly separated and collected by the machine. After the collection, it's off to another clinic (all of this is within UofM) to remove the temporary line. 45 minutes later we were allowed to leave. All in all it was a 9 hour ordeal. Long day for sure but we were happy to be home at the end of the day.

So... we're about 70+ days post bone marrow transplant. We've another 30ish to go before Lisa can be around large crowds and whatnot. Except for that line infection a couple weeks back we've managed to keep her healthy. 30 more days and we're going to have to celebrate somehow.