Saturday, May 29, 2010

Once again...

She's bald......we couldn't take the slow torture any longer. Chunks of hair falling out, flying around, getting in your mouth. Sooooo, Uncle Matt came over Thursday and did the honors. Lisa is TOTALLY fine with it, Mike and I were more melancholy. It's hard to believe that last week she had a head full of beautiful curls... but now that it's done, we just move on.

Both girls are recovering quickly with little problem.  Lisa went to school for an hour on Wed and Thursday and went for the whole day on Friday.  Maranda went for one class on Th, two on Friday and will be going full time starting Tuesday.  Nice to have them back in school so they can start counting down the days until they are done!

ONE WEEK UNTIL THE FUNDRAISER.  Hope all of our readers can make it. If not, donations can be made online or mailed.  Check out the website for more info or to register for events.

Monday, May 24, 2010

And to Think that I Saw It On Elmhurst Street

Lisa and Maranda are doing well…unfortunately for me, I’ve been a bit melancholy. Not sure why, maybe just things catching up with me. Last Monday, Lisa had to go in for her stem cell infusion which is done to help boost her immunity and get her body back on track. Could have been the Monday blahs, but I was in a deep funk that got worse when we arrived at the hospital at 9:00. Once we were checked in, I found out that while the stem cell infusion would only take 45 minutes, Lisa had to have 4 hours of hydration before and after…meaning we were going to be there for close to 9 hours…arghhhhhh! I’d forgotten to pack food, left my money in the car and would be isolated with Lisa and Maranda in an adult room because of the type of treatment Lisa was getting. I sent out a desperate text to some friends and within seconds they were on the phone and made it to the hospital before an hour had gone by. Kim and Bridgette came bearing donuts, smiles and a shoulder to lean on. They did a great job keeping Lisa and Maranda occupied and made the day go by quickly. Thanks ladies!!

Treatment was finished up at 7:30 that evening and Lisa, Maranda and I raced across town to meet Mike, Chrissy, and Tom at a MotorCity Hogs Biker meeting to promote the fundraiser bike run. Lisa was amazing….many times she gets shy and is resistant to going into crowds….not that night! She was skipping around and handing out her cards all over the place. I guess being properly hydrated can really effect your energy level! Or it could have been that Natalie just happened to know how to get one of the princesses on the phone and that was all the motivation Lisa needed!

The rest of the week was spent working, having meetings with teachers at the schools regarding Thomas and Christina schoolwork and trying to catch Maranda up with her schoolwork. There were some high points of the week, like going to the Comedy Club and having Lisa’s school sell some suckers and promote the fundraisers during young author’s night.

We had a nice time celebrating Tom’s 12th birthday on Friday and even more fun when a horse called Moe paid a house visit on Saturday. Camp Casey, a wonderful organization, had read the blog months ago and contacted me about paying a visit to the house. It was very fun. The kids got to groom Moe, learned about saddling a horse, do a craft, make horse treats for Moe, eat pizza that Camp Casey had arranged to be delivered, and best of all, got to ride Moe down to the end of the block and back. I think it’s the first time people have ever slowed down on our street…I kept wondering if we would end up being in a new Dr. Seuss book…”And to Think that I Saw It On Elmhurst Street”….we certainly do have a lot of unusual things happen to us!

Saturday and Sunday we enjoyed the weather and having no scheduled activities. My mood switched once more back to melancholy as I realized that Lisa’s hair had begun to fall out. Friday and Saturday I notice a few strands here and there. Today, it’s really starting to come out. Mike and I kept hoping it wasn’t going to happen. I got pretty emotional about it giving Lisa a bath tonight. Maranda questioned my tears “Why are you so upset…Lisa’s lost her hair before…it’s normal when you have chemo.” I couldn’t answer…while Maranda’s thought process is completely logical, my mind had gone to a place where anger and pity hangs out and I found myself thinking “Good God, this is what we think of as normal now, this is what is to be “expected”…I just want my old life back, I just want this to all be over, I just want Lisa to be “normal” and “have hair…really, is it too much to ask?”. Two years of doing this, you would think I would know that the person is more important than the hair…but really, I just want Lisa to have her life back…I want her to grow up and have babies and do and have all the things little girls dream about. I’m still in denial about what this beastly disease may rob us of…I still hold on to hope and miracles and lock away all the truth and reality…I force myself to remember that we have Lisa and our loved ones today and can’t worry about them being gone in the future….I use lots of energy to stay away from the dark shadows of my mind and that may be the reason for some melancholy this week.

I know that life goes on, it’s a bumpy ride, and there are lots of ups and downs. I have to just keep hanging on and thinking good thoughts.

Hope you do to!

Monday, May 17, 2010

Updates, updates, and more updates

This photo was taken on Saturday during Lisa's last scheduled chemo. While at the hospital we met several NFL players, UofM Alumni football players, and Lloyd Carr who were all in town for the annual UofM Alumni Golf Outing. In the photo with Lisa and Tom, is one of the many local hero's at the hospital, nurse Stephanie. It was nice to see all the familiar friendly faces on the 7th floor at Mott.

Today is Monday May 17, and Lisa and Mom are on their way to UofM for stem cell infusion. After two weeks of chemo on top of the MIBG therapy we expect Lisa to experience a period of time of low blood counts. The stem cells will help boost her back to normal levels. These particular stem cells were harvested from Lisa last year. Maybe as long as a year and a half ago. Once that is complete all that we need to do on a regular basis is blood work twice a week at the local clinic. Yea!

Maranda continues to get stronger every day. Hard to believe that it's only been a couple weeks since her surgery. She looks great. Great posture too!

So now our focus turns toward the fundraiser on June 5. There's so much going with this it's really very cool. We've over 100 gift baskets to auction. Each of them have multiple gift cards and prizes. You can see most of the items listed on the web site. There will be seven bands donating their time and talent throughout the day. They are listed on the web site too. There's 30 different games for the kids to play. Additionally there will be planes, helicopters, firetrucks, rescue vehicles, police, motorcycles and other static displays. It's all very exciting. You'll begin to hear about the event on most of the local radio stations and tv news stations. You can help by signing up to volunteer or simply to spread the word. Hope to see you there.

Thursday, May 13, 2010

Recovery in Progress

Both girls are doing a fine job at getting back on their feet.  Maranda is up and about, complaining she's bored and asking to go shopping every few minutes.  She still tires easily especially when she hears the words homework or chore.

Lisa is getting chemo this week. Between the radiation from last week and the chemo this week they anticipate her counts falling so she won't be able to go near people for a while. She has stem cell infusion next week in an attempt to give her body a boost. She's thrown up twice this week and we anticipate things getting a little worse before they get better. 

Tomorrow, Mike and I (and maybe Lisa) will do a radio interview with Ike Engelbaum on WNZK 690 AM radio to build awareness about neuroblastoma and to promote BLASTnb. Should be on around11:00 a.m.

Tune in and keep praying!

PS...Offer up an extra prayer for Mike's mom, MaryJo.  Two weeks of helping us took its toll on her and she most likely will be admitted to the hospital tonight because of a bad cold that is causing her breathing troubles.  With the close call she had last November, we don't want her taking any chances!! Prayers for MaryJo would be appreciated!!

Sunday, May 9, 2010

Yeah!! Lisa's out of the hospital!!

Lisa's radiation levels were low enough today for her to be released from the hospital.  We still need to exercise caution so that we  minimize radiation exposure to others especially the other kids.  For the next 3-5 days they recommend that we keep a 3 ft radius and take special precautions making sure no one shares food, combs, towels, washcloths.  Lisa's laundry is to be done separately and we need to limit kissing, hugging and sitting next to her.  Not the easiest things to do with a 5 year old, but Lisa is real good about helping us remember the rules and it's just for a few more days. 

Lisa handled the whole experience very well.  Yesterday was the first day that she got upset and started crying she wanted to go home.  Dr. Yanik came in during the first crying jag and asked what was wrong and immediately went to work to come up with a remedy.  Asking for size 7 & 8 surgical gloves he surprised the nurses with his ability to blow one glove up inside another and provide the biggest balloon head Lisa has ever seen.  His prescription worked, she was giggling and playing with the balloon within minutes.

Visits from Aunt Sam, Grandma, Grandpa, Claudia and Aaron helped to make the rest of the day bearable.  Mike was with her last night and after getting chemo today and her radiation levels read, they were released from the hospital.

Maranda is also doing better, she is taking a lot less pain killers,  able to move around with a lot less effort and asking to go shopping. 

Everyone is healthy and we are all back together...that's a Mother's day gift I like!! 

Keep praying, keep hoping and have a wonderful Mother's day.

Wednesday, May 5, 2010

Our Cancer Warrior

Once again...Lisa's docs are pleased.  Everything is going smoothly.  We were woke up at 6:15am (UGH!!) to go down and get catheter put in.  Besides a little computer trouble and anesthesia having to put in an extra IV because the drugs wouldn't flow things went well.

When we returned to Lisa's room the shields had been put into place, more things had been wrapped in plastic and the preparations were almost complete.  The doc asked to have the extra IV removed, which did not make Lisa happy.  She had been asking for an IV line in her hand and a "pee" bag since she saw Maranda in the hospital a few days ago.  Apparently, my kids like the hospital and all the intrusions in their body, they have figured out they get "special" treatment with these things and they like it... a LOT!

Lisa was given the MIBG radiation at 11:30 and I had to stay out of outer room for two hours because levels were so high.  I went to the lunch room next door to her room and watched tv which I set to same channel as hers.  We talked back and forth (A LOT) on walkie talkies until she fell asleep about an hour later.

Lisa G., our good friend, totally made my day with a surprise visit.  Somehow she managed to maneuver her way thru the buildings and find us tucked away in the basement of the cardiac center.  She kept me company and helped make the day go faster.

Lisa has been asleep for a few hours now and I'm updating the BLASTnb website and blog trying to keep busy.

So far so good, Lisa continues to fight and be a warrior and Mike and I pray for her remission, Maranda's recovery, everyone's health and some sleep!!

Tuesday, May 4, 2010

Lisa is settled in and ready for MIBG

Maranda came home yesterday and has been doing a little better each day.  Still on strong painkillers and still watching tv.  She is doing some walking here and there but she is still pretty tired.

Lisa went to school this morning and then went for chemo as an outpatient in the afternoon.  We finished up with that at about 5:00 and then she was admitted.  We are in the Cardiac Care Center--MIHCR Clinical Research Unit (this is where the specialized room is).

Tonight she had free reign over the place.  It's pretty quiet here and because it is a research unit it's more like a doctor's clinic than a hospital floor. They are very nice and have really been accommodating as Lisa kept asking questions and popping down to the desk to ask just one more question or get one more thing. There is one other patient in tonight and looks to be only one nurse on duty for the evening. 

Tomorrow they will place her catheter early and then they will administer MIBG treatment.  Once she gets the radiation, she will have to stay in her bed until she is no longer "radioactive" about 3 days. 

This will be interesting.  Wonder who will go stir crazy first...Lisa or me?!!

Monday, May 3, 2010

Maranda's Home. Next up, Lisa

Maranda came home today, tired, cranky, sore, and 1.75 inches taller than when she left on Thursday. Talk about growing pain. Two rods, six screws, and a couple other pieces of hardware now give her the best posture in the family. It's Lisa's turn tomorrow. She'll check in to UofM at 12:45 to begin her MIBG Therapy. With a little luck she'll get out on Sunday.

Sunday, May 2, 2010

Sunday Morning Updates

Saturday went pretty much as planned for this sort of thing from what we're told. Maranda slept most of the day but did manage to get up and walk down that hall 3 different times. Yea! She was disconnected from her IV lines and monitors on Saturday morning. The only thing that remained was the catheter which was pulled this morning, Sunday, just before they wheeled her down for a quick x-ray. She seems to be slightly less uncomfortable and managed a smile or two. Unfortunately none of the smiles were the result of any of my attempts to humor her. So with the catheter pulled the goal today is to walk the around the entire floor, go to the activity room, sit up more, eat a full meal and start getting herself ready to go home as early as Monday afternoon. Lisa, by the way, has been bouncing off the walls. She has been a ball of energy and is doing great. we'll be back here at Mott with her on Tuesday afternoon. She'll go to school in the morning and then head our here to get prepared for her treatment on Wednesday. With a little luck we'll be out of here next weekend. Happy birthday to Grandma Mac. I won't disclose her actual age but FDR was president, Babe Ruth played his last baseball game, the United States Social Security Act passed, Parker Brothers released the board game Monopoly, and the First screening of Snow White and the Seven Dwarfs was shown. Regardless of what else happened that year, she was given to us and we are grateful. She's had a rough couple years herself but she never complained and has always helped us through this difficult time whenever she could. Today, as with most days when one of our girls is in the hospital, she's at home taking care of the house and the other kids there. Thanks mom you're one of a kind, and a kind one you are.