Saturday, November 28, 2009

Disney Pictures - (Added the rest of the photos 12/1)


Mike here - I finally found a place [and had some time] where we could get a decent connection and upload pictures. View pictures at http://welovelisa.shutterfly.com/

We've been very busy to say the least. I'll let Linda fill in all the details later but we're having a very nice time. Give Kids The World is quite a place

Tuesday, November 24, 2009

Thank you

Thank you to all of our family, friends, readers....your kind emails, phone calls and posts have buoyed my spirits. I have been reminded once again of how blessed I am with a great support system. When I feel myself starting to slip, I re-read the kind words that were sent and can feel the strength coming my way.

Thank you to my "peeps" who came and had a drink with Mike and I when I put out a call for support.

You would not know by looking at her that Lisa is on the verge of a fight with the cancer beast. She runs around this house laughing and giggling. I'm so glad that she is feeling good and will be able to enjoy her trip to Disney. I've heard great things about the place we will be staying and everyone is excited.

We will post pictures as soon as we can. As I write, there is only 4.5 more until limo pick us up. Guess I better get some sleep!

Everyone have a happy Thanksgiving and keep praying!

Sunday, November 22, 2009

PLEASE PRAY...TESTS CONCERNING

The phone call came last night...the test results are "concerning". I don't even know what to write.

Do I tell you that even before we dialed the number, we knew the news would be bad but still hoped differently? It was Saturday and the doc left a message to "call", if it was good news she would have left that on the message, not just a return phone number.

Do I tell you that we sent the kids in the other room as we put the doc on speaker phone and of course while the older ones did as they were told, Lisa bounced happily around us oblivious (or so it seemed to everything)

Do I tell you that Friday night, Lisa told me her doctor left a message and had bad news for us ( we didn't retrieve the message until Saturday night and the doctor didn't say anything good or bad on the message...just to call)

Do I tell you that tears just streamed down my face uncontrollably during the call? Do I tell you that I had to go hide in the shower for the next hour until the kids went to bed? Do I tell you that Mike and I looked at each other in shock and disbelief at 9:30 pm and realized we had no idea what to do with ourselves?

Do I tell you that I started asking myself if things really mattered...what difference does it make? Does it matter if Lisa stays up late, does it matter that she hasn't learned how to tie shoes or zipper yet, does it matter that she still wears a pull-up to bed, does it matter that she can't recognize all her ABC's?

Do I tell you that I finally just went to bed numb? Do I tell you that Lisa woke me at 5:00 to sleep in bed with us and I left her there with Mike because the tears were coming and I didn't want to upset her?

I do not know what to tell you. My mind is a whirlwind. Somewhere deep down I really thought she was going to beat this. I thought she would be the one. She looks so good and is so happy. I cannot belief that she is going to have to go thru everything again. She will be bald again and sick and skinny and not eating and in the hospital and.......

I guess I should tell you what the doctor said. The tests are "concerning". On the three different sets of scans, there were three different areas that showed possible activity. Any one by itself, not so concerning, but that each test identified a different area causes concern. There was areas at the tops of both her legs, two small areas in her brain, and an area near her neck and arm. All spots are small, but most likely indications that Lisa's remission is over. The doctor will be scheduling a biopsy to be done AFTER we return from Disney trip.

I am......I don't even know...

Is God trying to teaching me something and I just keep missing the lesson so I keep having to "learn" some more....I just don't know what he wants me to learn and can't fathom why Lisa has to be the tool he uses.

I can't think "forward" more than a millisecond because I just start crying. Honestly, any thought I have just crushes me....I am paralyzed with sadness and fear...I do not want to go thru this again...the thought "I can't do it" races thru my head even though I know I have no choice...

So, it is 6 am on a Sunday morning and I post this hoping all of you will move Lisa to the top of your prayer list and PRAY, PRAY, PRAY....for a cure and for strength and for hope...because we need all of it.
P.S. There is another thing that we have been wanting to share that we got news on the same time Mike's mom went into the hospital. Maranda's tests re:scoliosis are dismal as well. The doctor wants to do a spinal fusion. While I knew this was something she would probably need in her life sometime, I really thought it would be when she was 16 or so and had stopped growing. Apparently not...her curve has increased by 10% and the doc wants to do a spinal fusion. She originally said June, but cautioned that we would need to give Maranda our full attention, so she warned us that if we thought Lisa would end up in treatment and need our attention, she would prefer to bump Maranda's surgery earlier rather than later...which now leads me to wonder, what the hell am I supposed to do?!

Thursday, November 19, 2009

Lisa Rocks...we are done with Motts for the week!

Wow...Lisa rocks. She got thru all her tests this week...only shedding tears on Monday when they poked her repeatedly trying to get an IV line in...and had a grand finale today as she lay perfectly still for 1.5 hours as she did her MIBG scan with no anesthesia. She is amazing!!!

This is what her life was like this week.

Monday...she went to school for an 1.5 hours and then we headed to the hospital. She had blood drawn in the clinic at 10:00 (no tears) and handed the nurse the vials for the blood. After, we immediately raced across hospital to the xray department, got 12 oz of contrast which she had to drink over the next 2 hours so she could get CAT scan. Raced all the way back to the clinic to sign in to see her doc. At 11:15, saw her doctor and we talked about precautions for flu season and Disney trip. We left the doctor and raced all the way back across the hospital back to xray to get CAT scan. Spent the next hour at CAT scan because although the techs tried their hardest, they just couldn't find a vein to run the IV for contrast. After poking Lisa 5 different times (each poke causing more pain and tears) they paged the "swat" team. Using all their special tricks and equipment, it took the "swat" team an additional 45 minutes to finally get a line in. After that it was clear sailing, the CAT scan itself only took 15 minutes. As we finished up the techs were getting ready to pull the IV and I told them "no way". We had tests for the rest of the week and Lisa was not going to have to endure torture every day to get a new IV. While the techs agreed with me, they were not in a position to "approve" leaving the line in because it could lead to infection. Fine by me...we just went to a higher source. With her doctor's approval, the line was left in which made the rest of the week pretty much pain free and school free (the docs were concerned about contamination and possible injury if we sent Lisa to school and apparently other people might be a little freaked out seeing an IV line protruding out of a kids hand...hmm...I forget not everyone sees these things on a regular basis!)

Tuesday was an easy day with just an injection using the IV that was already in place.

Wednesday was a long day with an MRI and MIBG scan, but things went smoothly because the lovely IV line was still in place which made it easy to put Lisa under anesthesia. We started the day at 9:30 and left around 4:30 with Lisa still a bit groggy and very grumpy.

Thursday was a spectacular day because even though the IV was in place....LISA DIDN'T USE IT!!!!!!!!!!!!!! YEAH!! The MIBG machine is very quiet and it is not enclosed. It is a narrow "bed" that has a big "camera" that quietly moves around you, similar to the radiation machine and you have to lay perfectly still for the scan. To remind Lisa not to move, they took a big piece of tape, tacked it on one side of the bed, across her head and then to the other side of the bed, they also taped her feet to the bed and secured her arms to her sides. She closed her eyes for the first 10 minutes while they scanned her head. When they were done with that, she was so quiet that the tech asked if she was sleeping. Nope, just being very still. Once her head was done, they moved the bed out a bit, and we were able to pop in a video for her to watch. She lay still the remainder of the time until the scan was finished. TWO hours of being still...wow, I'm impressed and proud and very happy. After the scan, that was it, we just walked out. No recovery time, no paperwork advising us on the side effects of an anesthesia, no grogginess or grumpiness. Yahoo...we were home by 12:30...the earliest all week...man, it's good to be home!

It's been a mixed week of emotions. While I hope and believe Lisa will be clean, I keep remembering others who have hoped for the same thing only to be slapped with the harsh reality of the recurrence of this disease. Even as we left the hospital, we met one of our Motts buddy who, for the third time, is fighting her cancer and she is only 4 years old.

Everyone keep your fingers crossed and pray, pray, pray that the results come back CLEAN!

Thanks!

Monday, November 16, 2009

Big Week This Week 11/16

Fire up the mojo, prayers and positive energy engines people. Lisa heads back to Mott this week for a set of CT, MRI, and MIBG scans. (She's getting the CT scan as I type this.) These are follow up scans to make sure that the disease is not reemerging. On the outside she's pistol with lots of energy and no sign of slowing down. We're counting the days, 10, until her Disney trip and hope to have all the GOOD results from her scans before we go. Woohoo!

Mike

Friday, November 13, 2009

15 Days to Disney!

And fifteen days until Lisa gets her princess trip. Today Dad took her to UofM for her seasonal flu and H1N1 shot. She didn't even flinch or cry. [Her brother and sisters should take note of that.] Next week is a big week with MIBG scans, CAT scans, and MRI. Cross your fingers, get out the beads, send that magic mojo and get that positive energy moving. We expect to get the results just before our trip.

video

Tuesday, November 10, 2009

Tuesday

8:00 PM, Just got off the phone with Mom / Mary Jo and she is doing great and sounds great. Tubes are still in to drain any fluids around the lungs but a chest xray is scheduled for tomorrow to determine how the ol' pipes are working. She was able to walk all the way down the hall with only little assistance so she is well on her way to recovery. I think this will be the last dedicated post for mom here on Lisa's blog unless something comes up.

Monday, November 9, 2009

Monday

Maureen [sis] called me earlier today to say that Mom/Mary Jo had a very good day today. She was up walking to the hall and back with little to no help and her appetite was returning. The excruciating pain that flared up yesterday afternoon is now under control. That pain was due mostly to the new tubes that were inserted through her back to drain the fluid that was collecting around the lungs. Tuesday and Wednesday her friends and neighbors will take turns visiting and checking in on her. Thank you for all your support these past few days.

Sunday, November 8, 2009

Sunday

Yesterday was a good day because the rest of the drain tubes and such came out. Mom was able to walk to the restroom and out in the hall a short way. By evening however she was very tired and did not get much sleep last night. Today, Sunday she was short of breath and they found that some fluid was gathering around the lungs. They decided rather quickly to put a couple drain tubes back in and she just returned from that procedure and looks much more comfortable aside from increasing discomfort around where the procedure was performed today. She did eat a little food but now the nurse is limiting her to only one visitor at a time so that she can get some rest. All things considered she's doing remarkably well.

Friday, November 6, 2009

Friday 1:00 PM

Mom's vent tube is out and she's sitting in a chair. First 100 words - Water, water, water... Yea!

Friday AM

Mom is more alert [and unfortunately more aware of her discomfort] The vent tube is her biggest irritant at the moment. The doctors will make a determination at rounds shortly as to whether or not it's time to pull it. I would be a big help for her to be able to tell us what she needs rather us guessing.

Thursday, November 5, 2009

Thursday Night 8:00 PM

Mom/Aunt MaryJo/MaryJo has opened her eyes, and is communicating by nodding [albeit slightly] yes or no. Additionally she's wiggled her fingers and toes indicating that all the wiring is still attached and functioning. Hopefully tomorrow she can get off the vent and breath on her own. Thanks for all the prayers, positive energy, and mojo being directed her way.

Update on Mike's Mom

Mike's Mom is still in CICU; she was in surgery until 1:30 last night. She's still on the ventilator, and they are weaning her off the meds. Surgery went well. Replaced the ascending aorta and valve. The next few days are critical. After the surgeon described what happened and all, it's clear now just how close she came to not making it. "Most people don't make it to the hospital" is what he said. Please continue to pray.

A Prayer Request for Mike's Mom and our Motts Friend

How quickly life can take you by surprise. We received news this afternoon that Mike's mom was was rushed to the hospital. After some tests and an MRI, they moved her to another hospital that specializes in heart surgery. It is a heart problem and has something to do with the the aorta or the artery that is connected to it. She was being prepped for surgery within 3 hours of us getting the news. I last spoke with Mike at 9 pm tonight and she was still in surgery. Mike, his brother Alan, and sister Maureen have all gone to the hospital in Grand Rapids to be with her. Up to now she has had great health, so we are hoping for the best, but ask that you please pray for her and her family.

Also, one of our little Mott's friends Noah Biorkman has been circulating on Facebook...I found the post about him thru a friend in California. He is one of our neuroblastoma buddies. He was diagnosed in February of 2007 when he was 3, went into remission six months later but relapsed in September of 2008. Now prognosis is VERY bad... it doesn't sound like he is going to live until Christmas....I just don't understand..it rips me apart inside.

Family is asking people to send Christmas Cards. You can find more information on facebook or read about it here: http://www.clickondetroit.com/news/21522646/detail.html

Lastly...even though I knew I shouldn't...after I checked Noah's blog, I checked another of our neuroblastoma buddies blog. Carson passed away on Oct 2. I sit here drenching my keyboard with tears. I just don't understand. This doesn't make any sense. Why,why,why?! These children are so young and yet they have to endure so much suffering. I can't bear to think of Lisa having to go down this path. It breaks my heart. Please God, give us all strength and hope and protect us. Please, I beg of you. I know I should count my blessings each day, and I try, I really do, but in the wee moments of the night I feel as if I'm in a nightmare that even though the music may become less intense, you still know the bad thing is coming. I keep waiting for the bottom to drop out...Lisa's next scans are in two weeks and I get short on breath just thinking of taking her to the hospital.

Please keep us and all of our family and friends in your prayers. And remember to really try and count your blessings every day...it's hard, I know, but sometimes it's all we've got.

Wednesday, November 4, 2009

Countdown to Disney!

Lisa's wish trip plans are well under way. Our "box" arrived today compliments of Rainbow Connection and our sponsor Fire on Ice. I missed the initial "unveiling" of the box, but apparently there was a lot of joyous screaming, clapping and bouncing around. We made a video of the "second opening" when I got home from work, but it's too big to post on blog. If you want to see it, you can view it at: http://welovelisa.shutterfly.com/


Video and editorial comments are provided by Maranda.


20 days until takeoff. Our LIMO! arrives at 4am in the morning if anyone wants to see us off:)


We pray for a safe and healthy trip!