Tuesday, March 30, 2010

Tuesday, March 30

Sorry to have been mute for so long. Linda and I and many others have been very busy helping put things in motion for the fundraiser on June 5th. As I said previously, it's a welcome distraction. In the meantime, last week was chemo week #4 for Lisa who handled it with her usual grace which is all smiles and not one complaint. It's Tuesday morning now, 4 days after her last infusion, and I expect she is beginning to dip. This is to say that her blood counts are dropping to the point where she’ll become more susceptible to infections and viruses and whatnot. It means she'll be missing a few days of school but that we get her to ourselves for those days. We're truly blessed in that she looks great and seems to feel really good too. Her appetite and energy are right in line with any other 5 year old so I really am feeling grateful for that.

Next week is a scan week again and with those scans come a lot of apprehension and hope. Apprehension that things are not getting worse and hope that the disease lessens, or better yet has disappeared altogether. Send along your best mojo, prayers, blessings, and tidings. The scans are in preparation for Lisa's MIBG therapy at the end of the month. Either Linda or I will post those details in a separate post. Also, during that same last week of April, Maranda will have her spinal fusion surgery. We planned it this way to minimize the trips to the hospital and time away from the other kids.

As always, thanks for checking in.

Tuesday, March 23, 2010

Blast Off

We really enjoied the warm weather last week as you can see from the picture of Lisa. Aside from the those brief moments in the sun we've been busy laying the ground work for the June 5th, fundraiser we're planning. It might be too early to broadcast all the wonderful things that are happening with that but it's actually a welcome distraction. The event seems to give us something to do rather than just sitting around and waiting for the next appointment. Mark your calendars and save the date. Here's a link to the fundraising site: http:\\www.blastnb.com

Saturday, March 13, 2010

Treatments scheduled for end of April

We got the call on Thursday.  A spot has opened up for Lisa on a MIBG study.  The doctor is excited, it is one of the studies that has been out for a while, so it means she will be getting one of the higher doses of radiation allowable and it will be followed by chemo drugs that have had good response rates and that Lisa has tolerated in the past.

Maranda's doctor has been able to accommodate us and her surgery will be in April as well. At this point, Maranda will get her spinal fusion April 29 and Lisa will get started with treatment April 26.  Both girls will be in the hospital for approximately a week.   Maranda will be in a normal room for recovery where people can visit, give her moral support, pain killers, company and hugs.  Lisa will be in total isolation where we can be outside her room looking in and talking to her from the other side of the glass.

Besides all the psychological stuff and medical risks that goes along with these procedures, I realized one of the toughest things for me is that I won't be able to give Lisa any hugs and kisses.  I spent one day in bed this week with a bug which meant Lisa couldn't come near me because her counts were low.  I felt like I was shriveling up every time I heard her voice and little giggle.  One day later I found myself thinking how different she looked and had to keep hugging and kissing her.  I can't imagine what it's going to be like to not touch her for 3 or more whole days.  Wow!  We're going to have to start building up a hug/kiss bank right now...not that there will ever be enough hugs and kisses!

Treatment dates were set this week and we finalized the fundraiser date.  June 5!  That's fast approaching from a fundraiser perspective.  If there is anyone out there who has experience with fundraisers, time on their hands and a desire to be part of our fundraising planning committee, please shoot me an email at lyeshmcm@gmail.com.

Thanks and keep praying!

Wednesday, March 10, 2010

Well each day brings a surpising new twist to life.

Sorry for not posting much this past week.  Our attention has been on getting a sponsor for our fundraiser.  After two weeks of searching and finally accepting that we would probably have to launch our own non-profit, one conversation changed everything.  We believe we do have sponsorship and are working to finalize the date.  It will be a BIG shindig with something for everyone and will be happening in early June.  Stay tuned!

We all have been loving the chance to be outdoors as MI temperatures warm up to the 50s and we kid ourselves into thinking spring is here.  I realized yesterday to that I've been kidding myself about Lisa's condition as well.  She has been doing so great, that I find that I minimize the threat cancer really has on her life.  We've been blessed with many months of being "normal".  We can go places and do normal things like  school, church, shopping without a thought and I just treat our chemo visits as the "thing" she does.  Ya know, some kids have soccer, some kids have dance, we have chemo.  I was brought crashing back to reality yesterday when her doc emailed to say her blood counts were low and she shouldn't be going to school because she's at higher risk for infection and if she spikes a fever we will have to admit her.  What?! Reality came screeching in...crap, I've got a sick kid here.  She doesn't look sick, she doesn't act sick, but the truth is she has a terrible disease taking over her body.  Hmmm....not sure what that really means.  I guess just that sometimes it takes my breath away to realize how cruel and how unfair this disease is and how angry I am that Lisa has to suffer with it.  She is such a loving, happy little girl and it  pisses me off to think of all she's been through and how chances are her health is going to go downhill and someday instead of looking at a happy, smiling, giggling girl with mass of curls on her head, I'm going to be holding a bald, weak shell of a cancer warrior named Lisa. 

Okay...enough of that....can't dwell on the past, can't worry about the future...can only live in the moment.  And at the moment Lisa is having me dress every baby doll she owns (last count was close to 60) and we are planning on baking cookies later.

To end on a happy note, Mike's cousin Ashley put together a wonderful picture montage of Lisa and posted it on facebook.  You can also view it at http://www.youtube.com/watch?v=VrnCxps6dDg

Keep praying and if you could throw in an extra prayer for Mike and I that God give us guidance on when best to schedule Maranda's surgery and clarity on how best to help Tom get the skills and support he needs in the academic world.

Hugs to all!

Wednesday, March 3, 2010

Chemo going well

Just a quick update.  Docs were able to amend the study so that Lisa is able to stay on it.  That means she stays with the same chemo drugs.   She's on day 3 of this cycle and side effects have been minimal.  She's looking good and feeling good. Thank you Lord!  The hope is that MIBG study opens in April and that Lisa can get a slot.  Again, while this treatment won't cure her, it does a good job of slowing the disease down.

One of our neuroblastoma buddies school has been raising money for Motts in his name and he may be featured on Detroit Channel 4 new tommorrow...so keep your eyes open.

Also, I've been working with some friends on putting together a fundraiser to raise money for Neuroblastoma research....we've got a place, date, band and many other ideas we're looking into....we're still ironing out details, so stay tuned and be ready to join us June 12 in Canton to BLAST neuroblastoma!