Gift from above

Mike’s FaceBook post today read “Dad, I 've missed you every day these past two years, and has it ever been a long two years. We received some good news about Lisa today. Thank you. I'm sure you had a hand in that. Keep up the good work! We're going out to celebrate!”

Hard to believe it has been two years since we finalized our forever family, Bernie passed away and Lisa was diagnosed with cancer. Today, though we received some good news….Lisa’s scans came back and there has been a decrease in the amount of cancer showing on scans.

It really is outstanding news and her doctors are very pleased with her progress. As most of you know her type of cancer…neuroblastoma…is quite the beast . While kids normally have a small period of remission (Lisa had hers last summer), once they relapse there really is no cure. The goal becomes to find a treatment regimen that keeps the cancer from spreading, have no new growth show up on scans and buy as much time as possible. Lisa’s scans showed NO growth AND a DECREASE in disease in a few areas. Mike and I are very happy. Our hope was that Lisa would remain stable, the fact that she has a decrease is truly a gift from above.

I’m under the impression that Lisa is one of the few who have responded so favorably to the chemo treatments… It does not mean she is cured, nor may she ever be, but it does mean we probably have tacked a few more months onto her life. The MIBG therapy that is coming up at end of month will hopefully have more positive results and help beat this bastard of a disease back a bit more and buy even more time. Lisa truly is proving to be a warrior. Her ability to keep on going and be so happy reminds me how lucky I am, how precious each and every day I have on this earth is and that I should never take a day for granted. Oh to live life like a five year old is to really appreciate every moment.

Thank you so much for all the prayers….keep them coming…it is truly a miracle that will cure Lisa.

PS…Prayers for Sharon (Mike’s sister) are working. She is recovering from surgery done to remove an obstruction in her small intestine and we are hoping that is the last of her troubles and that she has a quick recovery.

Prayers for both Maranda and Lisa continue as we get prepared for both girls to enter the hospital at the end of the month. Both will be staying at Motts for a minimum of three days, more likely five days with a 2-4 week recovery at home. We’ll keep you posted and would love visitors at the hospital to help us keep each girl company! More details to come.

Monsoon Season

Mike here....We’ve got a big week this week everyone. To begin with today Lisa’s sister Maranda has an appointment with her surgeon in addition to having x-ray’s taken. The appointment with the surgeon is to discuss what to expect with her spinal fusion surgery scheduled for April 29. Maranda will be inpatient for about a week and then home and out of school for a month as she recovers. Lately Maranda has been experiencing increasing discomfort on the upper right side of her back so I don’t think this surgery can come soon enough. We’ve heard accounts from a few sources say that after they’ve had the surgery they felt a lot better. However; that doesn’t negate the images of this surgery that I’ve seen, and the idea of operating on the spine is just disturbing to me. Please pray for Maranda and the medical team. May the days preceding the surgery be stress free and rest filled and that everyone is ready for the surgery on the day it occurs.

This is a scan week for Lisa. I’ll take her in for an MIBG injection tomorrow. Here’s a quick bit of information on MIBG. MIBG is a radioisotope (MIBG, iodine-131-Meta-IodoBenzylGuanidine) and it is injected into a vein. This compound attaches to specific tumor cells thus highlighting the areas where disease is present. The next day, Lisa will be scanned and the areas that uptake MIBG are more clearly visible. MIBG scans should not be confused with MIBG therapy. MIBG therapy utilizes the MIBG isotope as a vehicle to target tumor cells. In this therapy, MIBG is attached to a radioiodine, (radioactive material). As cancer cells uptake the MIBG and the radioiodine the cancer cells are destroyed by the radioactive material. The doctors at UofM pioneered this treatment so we've got some of the best minds working on this.

I met with Lisa’s doctor last Thursday before her last dose of chemo of round four. We talked about what to expect during and after her MIBG Therapy scheduled for April 26. The 26th will mostly be prepping her for the Therapy that will begin on the 27th. On the 27th she’ll begin her treatment which will isolate her for at least 36 hours because she will be so radioactive. During those 36 hours only the medical personnel are able to enter the room in full hazmat gear to take vitals and give meds and chemo. Yes, on top of the MIBG Therapy Lisa will be receiving her 5th round of chemo. After 36 hours the level of radiation emanating from Lisa should be low enough for Linda and I to go in for short visits. After another 36 hours levels should be low enough for her to discharged. Once home with her we can expect to experience all the “normal” side effects of chemo and radiation treatment. We’re cautioned that while we can resume our usual lifestyle, we should not sit for prolonged periods with Lisa where she is within two feet of us. Hugs and kisses – ok, naps and having her sit on your lap for the duration of a movie – not ok. This part is going to be difficult as Lisa has always been the cuddler. She’ll be out of school for a couple weeks as she recovers. At least she and Maranda can keep each other company.

So as you can imagine a month such as this brings with it all of the stressors that come with waiting. I find periods like these to be the worst. Idle moments seem to get filled with tormenting thoughts. To make matters even more distressing (ah yes, but wait there more!) My sister Sharon is in the hospital with what we’re not sure, except to say that there seems to be some sort of intestinal blockage. After suffering for more than a month she was admitted Friday after a particularly disturbing episode. And, Linda’s father is scheduled for surgery to treat his melanoma this month. If when it rains it pours, then monsoon season is truly upon us. I’m looking forward to May’s flowers.

April does bring with it one very bright anniversary. April 7th, 2008 was the day we adopted Thomas, Christina, and Lisa after fostering them for three and a half years. Lately I’ve been able to look at them individually; Maranda included, and truly appreciate each of them for their own uniqueness. In those moments I marvel at my own good fortune.

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.

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

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!

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!

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!