Friday, April 30, 2010

Uneventful Night

Last night went pretty well.  The nurses quietly slipped in and out and kept Maranda sedated and comfortable.  I got 4-5 hours of sleep...yeah!

Maranda has been dosing on and off between visits from various medical staff.  She's been asking to be rolled from one side to the other and just asked if she could lay on her stomach.  We got her positioned on her stomach and she is sleeping pretty soundly.....oops...apparently too soundly, the alarm just went off and her nurse is now in here trying to wake her and get her to take deep breaths...her oxygen rates are a bit low.  Ok, so physical therapy is due at 11....we'll be hitting the med button before we get's bound to be painful. 

I have to say I'm stunned at how quickly Maranda is coming along.  I thought it would take a lot longer for her to get moving, but she's starting to pull herself to the side, moving her legs and even asked for a few bites of applesauce.  Amazing how strong and brave she is.

Still praying that her pain is minimal and she is up and out of her in record time.

Thursday, April 29, 2010

Maranda is drugged up and resting

The spinal fusion is complete; the surgeon says it went well.  We got started around noon.  There was a small problem getting the IV in, we switched to happy gas, Maranda endured another poke to get IV in and then she was out.  Surgery lasted about four hours, then it took about two more hours to stitch her up and get her awake enough to respond to the doctor's request for her to wiggle toes and fingers around 6:30.  She got moved to her room around 7:30 and has been sleeping most of the time.  She is having pain even though she is on a continous pain pump with a boost she can push every few minutes.  They added some valium and Tylenol around 9:00 and that seemed to lessen the pain and she seems to be sleeping better.  It's been a long day, will probably be a long night and a tough day tommorrow.

I can only imagine the pain she is in.  I pray that the meds keep her comfortable, that this whole experience will soon be a memory and we move quickly down the road to health and recovery.

Sunday, April 25, 2010

Lisa's Treatment Delayed

So….. Lisa’s MIBG treatment has been delayed. You’ll never guess why….go ahead, try…what do you think could have happened to delay the treatment? Why you think about it, I’ll fill you in on what else is going on.

Things have been going really well. Lisa is feeling great. The rest of the kids are doing well, my dad’s surgery went fine and his scans came back clean. Yeah!!

We’ve been keeping ourselves busy trying to get the pieces in place for the fundraiser. Today, Tom, Lisa and I accompanied two of our committee members, Aaron and Claudia, as they visited one of the Harley Shops to drop off fliers for the motorcycle ride. We ended up talking to some of the bikers out back and they were all very supportive. One special biker, John, let Lisa start his bike, play with the radio, put on his helmet, gave both Tom and Lisa turns sitting on his bike. Another biker was a chaplain and prayed over Lisa. The kids loved meeting everyone and we’re hoping that they spread the word and help us make this the best fundraiser ever.

As the number of days until Lisa and Maranda enter the hospital shrunk to single digits, I found myself getting more anxious. Even though I know I have to think positive, it takes a lot of mental energy to lock away all the “what ifs” and I get pretty edgy. As the end of the week grew closer, I realized that my efforts and focus have revolved around what things I could do/make/get for Lisa to try to make her five day stay go by as quickly as possible. Sadly, I hadn’t put any thought into what Maranda might need. Because her condition has a “cure” my focus was not as intense. That just isn’t fair; she needs/deserves attention (as do Thomas and Chrissy).

I wondered how Maranda felt about all the attention going to the fundraiser and Lisa. When I asked her, she thought for a second, and said it was okay and she understood. Understood? How can anyone understand any of this, how can someone so young be so brave and selfless? It made me sad to realize that I’ve become quite cavalier with the hospital routine. The first time Lisa ever had surgery was to put tubes in her ears. Mike and I both took her and were so anxious. We asked lots of questions, read the paperwork thoroughly and were so worried about her going under and the possible side effects. I got teary eyed when she went to sleep under anesthesia and was teary eyed when she returned a short time later groggy and grumpy. Now, I just go in, sign the papers and although I worry, I have this false sense of security that everything is going to be just fine. I realize I need to not downplay Maranda’s surgery and make sure Maranda knows that she too has people backing her, she is not alone and she does not need to be so brave, that it’s okay to be scared. Mike and I will be there for her, Thomas, Chrissy, Lisa, by their sides, for the big and small curves (no pun intended) in life.

So given all the thinking I was doing this last week, I had to wonder if the delay in Lisa’s treatment was an intercession from God. Was this his gentle reminder that I needed to tend to Maranda’s needs as well as Lisa’s? (not to mention Tommy and Chrissy) Was this God’s way of giving me a little more time to get it all done? Was it his way of solving the problem of how I could leave Lisa lying in one wing of the hospital while Mike and I paced the floor of another worried and waiting for Maranda to come out of surgery? So…….what actually did cause the delay in Lisa’s treatment? Did you figure it out? Did you guess? It was the giant ash cloud, you know, the one from a volcano in Iceland. That’s right, because of the volcano, air freight delivery was disrupted and this impacted the delivery of one of the drug components used by the pharmaceutical company to make the agent needed for Lisa’s treatment. Hmmm….act of nature or act of God?

So, now we focus on getting Maranda ready for the week. I’ll be reaching out to some of her friends (shhh, to those of you reading) to make care packages so we can give her a little something each day to keep her occupied. And I’ll make sure I check in and see how she is feeling and doing…cause if I’m scared I have to imagine she is to!

On a final note, the fundraiser is going full-steam ahead and we’ve got a very capable committee on board to continue on with our mission as we tend to our kids. For those of you who want to attend, we did find a way to accept credit card payments. You will need to create a free account with Giftberry (Giftberry is a 501.c.3 non-profit organization that provides free web-based services to qualified charities It is a secure website. there is no membership or registration fee to join GiftBerry.). Just click the link at the top of the page and it will guide you thru the steps needed to use your credit card to make reservations for BLASTnb. To pay by check/cash, simply print, complete and mail the form from

Friday, April 16, 2010

Mott / Customs

Lisa is getting excited about the UofM Scrimmage game on Saturday. [Ok, so are we] Being Mott patients this past year, Lisa and Maranda were invited to bring their family to the game and run out of the tunnel with the other Mott families before the players take the field. As you can see from the photo, Lisa is ready. [I updated the picture after the practice]

The spring game is free to the public and is the final practice at the stadium this spring. The UofM football team and C.S. Mott Children's Hospital have partnered in a fundraiser for the new hospital scheduled to open in Fall 2012. Here are a couple links for more information.

What else… oh I forgot mention that Lisa and I visited my sister Sharon last Wednesday, 4/7. Sharon as you may recall had surgery that day to remove a blockage in her small intestine. Sharon is home now and doing well, thank you for the well wishes and prayers. Sharon lives in Tecumseh, Canada. Canada. You know, across the border. Not the USA. Meaning Lisa and I had to come back through customs. Normally this is not a problem. These days however US customs screens for things like bombs, drugs, illegal aliens and radioactive material. It would appear that my princess is radiating more than her typical charm as a result from MIBG injection on Tuesday, the day before. As I pulled up to the booth the exchange went something like this:

Customs: “Please turn off the ignition”
Mike: “O-Kaayyy”
Customs: “Hand me the keys”
Mike thinking to self: “No wonder you guys are taking so long to get the cars through”
Customs: Have you had any medical procedures performed recently?
Mike: Whacks palm to forehead. Light bug illuminates above Mike’s head. “Not me, but my glowing green buddy in the back has”
Customs: Mumbles something into her radio
Customs: “Please, roll down the back window”
Mike: “You’ve got my keys”
Customs: Hands Mike back the keys, “Do not start the vehicle”
Mike: “Yes mam” rolls down rear window. Hands back the keys.
Customs: “Aww” Mumbles something into radio

US Customs was great. It took about an hour to clear things up but they gave Lisa snacks and she poured on the charm.

Once the bells and whistles go off it starts the Customs computers talking with the computers in Washington D.C., so all the procedures need to be followed before we could leave It didn’t help that the trace amount of radiation that Lisa was emitting was so small that they had a difficult time determining what it actually was.

Not much else to pass on at the moment. We're working on the fundraiser of course, , and that's keeping our minds off the end of the month when both Maranda and Lisa will be admitted. Thanks for checking in. Mike

Friday, April 9, 2010

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.

Monday, April 5, 2010

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.