Sunday, November 30, 2008

Regan...Sybil....Lisa??????

who is this kid??? Man....it has been a rough few nights....we may need to get an exorcist before Lisa's head spins all the way around. Last night from 12 - 6 we probably averaged 15minutes of sleep for every hour. No idea what is bothering her. We are keeping up on the pain meds, her temp is under control....but she is agitated. She tosses and turns and talks in her sleep and gets really mad. She did have one of those diaper moments that apparently makes her daddy proud, but even that didn't settle her down for very long. Finally at around 5am when I couldn't take it any longer, I asked the nurse to give her Valium...that lasted about 4 hours so we got some sleep. Lisa started moving around and had another proud diaper moment followed by the bucket dance....yeah...all for Mom....my favorite thing! She basically didn't do much of anything today except for move from her bed and to the playroom couch.
The monotony was broken up by a visit from Uncle Frank and Aunt Kathy. Lisa chose to continue to lay on the couch in the playroom while we chatted. Another diaper moment had us racing back to her room. Once we had the situation under control, Lisa perked up and played some games with us. She stayed pretty alert until about 8:30 tonight when she finally crashed. Normally I'd be tickled pink about the early bed time...but I'm holding my breath that we make it past the midnight witching hour.
She is still not eating and there is still no strong indication of where the fever/infection is coming from. So far they've had some tests come back indicating it could be urinary tract or from her broviach. She's on some heavy duty antibiotics which should be taking care of the infections...but given her temp last night they added a third antibiotic to the regimen today. So hopefully we are finally making some headway. The surgical team mentioned taking another chest x-ray middle of this week...so it doesn't sound like Lisa is getting out of here before Maranda is admitted.
Also...another small complication...because of the multiple poopy diaper dances, she is now on contact precautions again. Until they can test her "output" and get two negative results for C.diff, she is considered contagious and not allowed to play in any public areas. On the positive side...that means we won't be able to have a roommate....on the negative side...that will include Maranda this week. ARRRRRRGGGGGGHHHHHHHHHHH!!!!!! Let's hope Lisa can give two samples in the next day so we have good results back by the time Maranda is admitted and that they can stay together.

9:45 pm---well before I could even complete this blog entry Lisa provided a sample...one down, one to go.

Saturday, November 29, 2008

Days are running together

We're still at Motts and starting to lose track of time. Must be Saturday, because I'm back at the hospital and I know Mike was here for Th and F night.

Lisa finally seemed to perk up this evening. She's not complaining as much about pain, except for some mouth pain which is still unexplained. Her temp has stayed below 100 since I got here and she is on antibiotics to take care of the infection that is causing the temp spikes (which I still think is from the drainage tube site).

We had some visitors this evening and after her initial shyness wore off she seemed to really perk up. She even decided to take them to the playroom and she spent some time in there.

She is still not eating. I'm hoping that perhaps she'll start now that we've got her pain, temps and infection under control. Once she eats, we should be able to get discharged assuming the temperature stays down.

So....we're closer to her getting out of the hospital and Maranda getting in....we just stay focused on one day at a time...if I can just remember what day it is!!

Thursday, November 27, 2008

A Happy Thanksgiving


Mike here....

This Thanksgiving brings intensely into focus, that which I am thankful for.

Lisa, For helping us realize that every day is a gift, which is why it's called the present.

Family, Unfailing and always eager to step up

Neighbors that define the very essence of the word

Friends that blur the lines between friends and family

School Teachers that go way beyond teaching

Faith

Prayer Groups

"Perfect" Strangers - You know who you are, thank you

Understanding Employers, co-workers

Exceptional Doctors, Nurses

Childlife Specialists

You - You care enough to read this.

Thank you!

Happy Thanksgiving

Yeah....they pulled the drainage tube this morning....that is something to be thankful for!!!!!

Yesterday at 2:00pm the surgeons ordered a CT scan to see if there was still drainage in her stomach....eight hours later they came back to say there was some, but they think the body could just reabsorb it and there didn't appear to be an infection. I told them I wanted the tube out....the lead surgeon seemed surprised. He looked at the group and after I pled my case they agreed they would pull it in the morning. The nurse and I did are best to convince them to pull the tube right then and there. They told us they wanted to run a few more tests to see what was causing temp spikes and see if they could find source of infection.

Well....needless to say all the tests came back negative so while they still questioned the source of infection the tube would come out in the morning! Arrrrrggghhhhhh. Lisa kept spiking all night and threw up as well...our nurse made sure to let the surgeons know every time something happened. At 2:00 am one of the surgeons came back to reiterate the risks of pulling the tube out at night....piece could break off, there's no other surgeons in the house, no anesthesia available, etc...there was a slim chance of something going wrong, butttttttt if I really wanted he could pull the tube by himself....well...hmm...did I really want to be the one to blame if something went wrong...no...so I told him we would wait until morning.

Surgeons rounded at 8:30am today and I advised them that it would be a good time to pull the tube because it was the most mellow I'd seen Lisa in two days. They said they'd be back in an hour. They were and lo and behold it was the same surgeon from 2:00 am and the same risks as last night and the same limited staff, but now that he had time to rethink the situation, it wasn't going to be too bad and they would just give her morphine and it'd be over in a second....hmm amazing how the morning makes things seem so different. Anyway, the tube got pulled, Lisa screamed no more than normal and it was done and it was out.

She's complaining a lot less of pain, but is still pretty out of it. We're still trying to figure out what is causing the temp...she's gone as high as 104. She's a bit miserable but she's still fighting and has asked to be out in the playroom even if it means just sitting in her wheelchair. The surgeons finally prescribed some heavy dose antibiotics...so hopefully soon we will be past this. If her temp stops spiking by tomorrow, docs will bring her in for chemo next week when Maranda comes in.

It's been a good thanksgiving...the tube is out and two different families donated tons of food so we've had plenty too eat. Other families have their kids up here so it's been busy and loud just like our normal thanksgivings and there are plenty of movies to pick from and veg out.

Lots of things to be thankful for.....spouses, children, family, friends, nurses, doctors, jobs, homes.......from big things to small things. My big thing that I'm thankful for is strength, my small thing is for the Christmas tree lights I saw yesterday that made my drive to the hospital more scenic. What small thing are you thankful for?

Wednesday, November 26, 2008

ho hum

Still here, not much change. Lisa is still spiking temperatures and she threw up again last night...boo hoo for me.

Surgeons are sending her for a CT scan at 2:00 to assess if there is still fluid in her abdomen so they can pull the drainage tube. I vote pull the damn thing....it's not draining so if there is fluid it's not working right and needs to go...if there is no fluid it needs to go....so....pull it. I'm 90 percent certain that is what's causing the temp spikes. They keep testing her blood and urine looking for infection....I think the infection is from the drainage.

Ugh.....she's sleeping now and is pretty peaceful....she's probably faking because she knows there a whole bunch of drugs lined up for her to take...the stinker!

Tuesday, November 25, 2008

Thank God for Grandmas

Well Grandma Mac earned another halo last night. Mike was sick so she took his shift at the hospital. Lisa threw up twice (like I'm sorry I missed that!) and didn't sleep very well. Grandma spent the day with her and both were weary and Lisa was moody.

I got here about 6:00 and Lisa looked pretty punky...I asked if she had a fever. Grandma said no, they'd been checking it...but she didn't have one. Hmmm.....I think she has a fever or she's going to spike soon. She just wanted to sit in the wheel chair and her eyes kept glazing over.

One hour later she had a fever of 102....talk about Mother's intuition. The nurse had to consult with the surgeons to get permission to give her Tylenol (geez!). Within 30 minutes her temp had dropped and she was a little bit more social.

Unfortunately when I moved her from the wheel chair to the bed I caught her drainage tube and it pulled out all but one stitch and caused some bleeding and whimpering. The whimpering was mostly from me as I apologized over and over to Lisa. She was pretty calm and laid still while I paged the nurse. The nurse put a fresh gauze on it and now 1 hour later, we are still waiting for the surgeon to assess. They were supposed to pull the drainage tube today, so maybe it's a blessing in disguise, but it's still gross looking and I certainly didn't want to be the one who pulled it out!!

Still not sure when we are getting out of here. We know we're one step closer to the drainage tube being out (oops!). Lisa still hasn't eaten and while they have cut back her IV liquids, it looks like they want to reup them tonight. Haven't really heard anything else.

Talked to her regular docs today....with the way things are going Lisa will probably not be doing chemo next week...but we're still not certain on that either.

Maranda is scheduled for surgery next week Wed on 12/3. Just hope she stays healthy and doesn't catch the bug that has been going on.

Sunday, November 23, 2008

Still at Motts

Well...we're still here. I relieved Mike at about 12:30 today. Lisa is still in a deep funk. Not eating, having pain and moody. She's also toying with a temperature. While we hoped she would be out tomorrow. I don't think that's going to happen. They still haven't weened her off her TPN (IV liquids) and that has to be done over a course of a few days.

Although her drainage tube was dry the past two days it looked gunky. The nurse I had this evening was pretty persistent and worked on the line and cleared the gunk and a clot...once that was done Lisa drainage bulb filled 5 x's...that's over a cup of liquid! It could explain some of the pain she's been having, but that's a lot of liquid and I'm not certain they will take the tube out tomorrow which means no discharge.

She is still complaining about her mouth hurting which no one can figure out why....that is another reason she is not eating and if she's not eating, she's not going home. Arrghhhh!

On another note, Maranda had her MRI today. Poor kid....she came out sweaty and crying. Although we had this MRI done here at Motts in a more modern machine that included a movie during the procedure....it was still long and very uncomfortable. When we booked the test, we were told it would be a 1 hour test and I could be sitting outside the room. We were supposed to get started at 3:30 today, we didn't get started until 4:30. Right before they started they told us it would be for 2 hours, included an injection and I wasn't allowed back there with her. Oh man...the look on her face. I gave her a quick pep talk, watched her get in the machine and then retreated back to 7th floor with Lisa. I went down 1 hr 20 minutes later when they were supposed to give her the injection...they told me 20 more minutes and I couldn't be in the room, they were sure she'd be okay...so don't worry. I told them I could stand by the door and she could hear my voice and I'd promised her I'd be there. 20 minutes later I reappeared and did just that. 40 minutes later I reappeared to escort her out of the room. She was hot, sweaty and teary eyed. She said the best thing about an MRI was it was over. They said she did good, but she was worried because towards the end they had to keep reminding her to lie still. I think she did fantastic...2 hours lying still on a hard surface with no body fat and a skinny butt is extremely uncomfortable...not to mention getting a shot half way thru and you couldn't see it because you had movie goggles on and your head is restrained by MRI equipment. I told my daughter I was so proud of her and I would do it for her if I could, but I can't. And you know what people.....that really, really, really sucks! I have to stand by and watch two of my daughters deal with tests and pain that many adults haven't had to endure and I can do nothing to relieve that pain or memory for them. I know I'm helping them by being there, but honestly it just seems so wrong that they have to go through all of this...if anyone should have to, it should be us the adults...I just don't get it. It breaks my heart and makes me question God, fate, and life. It also makes me pine for the "old days" the days when Sat and Sun meant sleeping in and taking kids to play dates, movies, shopping....anything but another trip to the hospital. It makes me realize that while I miss those days, I didn't fully appreciate the simplicity when I had it and it causes me to stop and look around and really appreciate what we have now...because believe me....it could be a lot worse....we're still holding strong and are very blessed with people who love and support us

Saturday, November 22, 2008

Saturday Night

Mike here---Saturday turned out to be ho hum. Lisa woke as usual about 9:00 AM, and hung out in bed most of the morning. There's still a fair amount of discomfort around the drainage tube that is exiting the right side of her stomach. I think once that is removed she'll be a little more comfortable. the good news is that there's very little draining any more so I think that will be out by Monday for sure. She doesn't have an appetite either and that's frustrating too. We need to get her to eat. Trips around the floor today were slow and uncomfortable for her. Hopefully tomorrow will be better.

Friday, November 21, 2008

Latest update

Ok....I'm not really on blog hiatus, I've just been on princess patrol and have had too much to do to get a second to blog.

So...last night was my night and it went excellent. The best nights sleep I've had in a while...and I was on a cot....so that speaks volumes. Lisa fell asleep about 9:30 and made it the whole night through...yeah!!

She's still having pain, but if we keep her on the meds round the clock we are pretty successful at controlling it. She walked to the playroom today and around the hall once...great progress! She did protest a little, but I told her to keep walking. You know me....sympathetic all the way! We need to get her eating before they let her go home....not normally a problem, but her appetite has not kicked in yet and they've still got her on liquid nutrition which even if she starts eating will take a day or two to wean her off so we're here until at least Monday.

Got and update from her doc and this is what she wrote re:next steps:
I just wanted to let you know what was happening with the next phase of Lisa's therapy. All the local experts have convened and agree that dendritic cell vaccine is the best place to start with Lisa. Now that could mean that later on she will get the high dose MIBG, but we want to start with the vaccine. I think this is a good plan for multiple reason...first of all none of the MIBG transplant studies are open here right now for Lisa. They are filled with kids who have been waiting from previously. Secondly, the high dose chemotherapy followed by the radiation will be the best thing for the brain lesion. With that said, we need to get Lisa set up for another round of regular chemotherapy so that following the chemotherapy she can get a stem cell collection for making the vaccine. This will be done on the same machine that she was hooked up to before for the pheresis, but they just need more cells. I've asked the clinic to schedule her for December 1 to see me and Dr. Mody. If she is ready that day, we'll give her the chemotherapy. If not, we'll wait. At this point I think it will be outpatient chemo, but I'll need to ask Dr. Mody exactly and I'll get back to you.

I'm still trying to decipher this and figure out if it's good or bad that we are foregoing the MIBG therapy (3 days of radiation in isolation) at this point in the game. I don't fully understand what exactly is a high dose chemo compared to what we've had and what kind of timeline all this entails. This is definitely a game of faith that everything is going to work out.

Annnnnnnnddddddddd.....I keep forgetting to blog that Maranda's surgery is approaching quickly. She is getting her second MRI done this weekend and her surgery is scheduled for 12/3. We've been told she will have 4-5 day recovery in the hospital and could possibly be off school for two weeks after that....which means with Christmas break, she'll be out of school for the month of December.

Other than all that, we're dealing with the everyday stuff just like the rest of you. Thanks to our generous family members and friends for helping us to juggle everything else....we couldn't do it without all of you.


Mike here - Linda's on blog hiatus. I spent Wednesday night and all day Thursday with Lisa and while sleep was intermittent during the night, she slept better after her 6 AM meds were given. She ate a little breakfast and very little for lunch (pineapple). Dinner consisted of only the pepperoni off the pizza. We did get to the play room a couple times and up to the 8th floor twice. The second time we went to the 8th floor she walked the whole way! So - I'm seeing progress, not as quickly as I'd like, but we're moving in the right direction.

Wednesday, November 19, 2008

Wednesday Evening

Mike here once again. Thanks for the prayers and positive energy everyone! Lisa was finally sleeping when I arrived at the hospital at 5:30 tonight. A while later however she was fitfully fading in and out of sleep, still in discomfort, and crying a lot. Later yet after Linda left and she was fully awake, I was able to get her calmed down and she ate three chicken nuggets and french fries. Yea! She probably would have eaten more if I had them.

The "best part" came 47 minutes later when... well.. you know that sound an almost empty bottle of ketchup makes when you give it a good squeeze? The sound that makes all the kids stop what they're doing and giggle? The sound that makes the over 60 crowd sweat, stop and look for the nearest restroom? Uh hu. This bottle had been sealed up for 6 days... it's empty now. I can't imagine more coming out. Unfortunately she was still in bed at the time of "The Great Purge". Two nurses and 25 minutes later we had our noticeably lighter patient cleaned up and dressed again. There are still some "tremors" but she's noticeably more comfortable. Ahhh, life is good. Thanks again!

Wednesday

I just got off the phone with Linda and all the while Lisa was wailing away in the background. We've been weening her off the morphine and other pain medication but it sounds like we might need to step it back up. If you've a moment, say a prayer for comfort for her.

Tuesday, November 18, 2008

Tuesday Afternoon

Mike here - Lisa ate a little pancake and sausage this morning and is drinking water regularly. We took a lap around the floor in the wheelchair and she reluctantly took a few steps here and there all the while bellowing as Linda described. Broccoli and pineapple was all that she'd eat for lunch and after a nap we wheeled down to the second floor for a movie, Kung Fu Panda. Lisa watched about 30 minutes worth and then asked to go back to her room. All in all a pretty good day.

Monday, November 17, 2008

Monday Morning

Lisa is recovering well. So far no side effects or infections from the surgery. She's still a bit grumpy and not being very nice to the nurses. Physical Therapy came and worked with her for 15 minutes and at least got her sitting up....she was very leery of what is going on.

She's making progress bit by bit....not even sure it's the pain bothering her....it's more psychological. The site of the stitches and drainage seem to upset her, but she is getting used to them. Right now she is laying totally naked on her bed because she said she wanted to go to the playroom and took her diaper off. However, when I tell her she needs to get out of bed to get dressed, she feigns sleep. She is asking to sit up more and that is a good sign.

Still not drinking or eating anything. Again, part of that might be psychological.....the last thing she ate was red jello and red juice....and, well that's what the drainage looks like. I'm trying a new tact and telling her that's the medicine the doctor used in surgery that is draining. She's a bit skeptical, but at least she is thinking about it.

Well...gotta go...the princess bellows.

Sunday, November 16, 2008

Out of the Fishbowl

Mike here - It's Sunday morning. Lisa was transferred out of ICU and to her normal floor early Saturday. She's sore, uncomfortable, grumpy, and exhibiting all the signs that she is healing as they would expect. Grandma Mac came out to stay with her Saturday night so that we could get out for a night. Thank you Grandma! I'll add a few more details later today after I get back out there.

2:42 PM - Lisa's doing great. The catheter is out and nose tube thingy too. Still have the drainage tube in the stomach but she's taken her first sips of water and juice. Better yet, as I type this she's peeing. Hurray, all the plumbing works!

Claudia, Arron, Maranda, Aubrey - thanks for stopping by! It really seemed to perk up Lisa.


Saturday, November 15, 2008

The Fishbowl

We're still in ICU. It's like being in a fishbowl. There is the window to outside and opposite that there is a window to the unit. I can see the nurses, techs, anyone going by, into other patients glass windows, and they can see me. It's a bit unnerving at first, but you get used to it pretty quick. I'm already making a mental checklist of what to pack when Maranda is here....don't have all the space or "amenities" that we are used to on floor 7.

We will be moving back to floor 7 sometime today. That's a good thing. Lisa has been doing well and her vitals are holding. They took out the breathing tube yesterday and will be taking out most of the extra "plastic" before we move. She's in a lot of discomfort when we roll her side to side, so they've opted to leave in the catheter for another day just so she doesn't have to get up to use the bathroom.

This morning is the first she was really complaining about the pain, which is to be expected. We're using morphine, tylenol and ice to try and keep her comfortable. She's been laying pretty still and sleeping on and off most of the morning.

Lisa is back to hating anyone wearing a white coat, scrubs or stethoscope and tells them that as soon as they walk in the room. While understandable, she does sound pretty menacing and not like the happy princess everyone is used to on floor 7.

There is some talk about having her get up and move around a little bit today which I find surprising given the complexity and length of surgery. It's amazing how fast the body starts to heal. I hope we can keep up with the excellent progress. I'm sure God is answering all the prayers when I see how well Lisa is handling things; it could be so much worse.

So...we all know what to do...keep praying!!

Also.....
HAPPY BIRTHDAY TO MY DAD AND TO OUR NIECE RORY!!!!

Friday, November 14, 2008

Quick Update

Lisa woke up about 5:30 this morning and was asking for us. Mike went up and stayed with her. Her eyes were wide open and she was conversing with nods of her head. They think they might take out breathing tube soon.

Mike is staying at the hospital for the morning, his Mom is on her way up there to give him a break and I'm headed back to bed for a few hours.

12:00 Update

Lisa's surgery is done. It went well. She rests now in ICU with meds to keep her comfortable. Nurse Dan has promised to take good care of her. The moon is out and its fabulous and full. The air is crisp.

Thank You God for all your blessings this day. Thank You Mary, Mother of God. Thank you St. Anthony, St. Theresa, St. Peregrine, St Gerard and the other Saints. Thank you friends, families and readers. You keep us strong, you give us hope, you provide us comfort.

This day is done and a new one begun, another chance to beat cancer and LIVE strong.

God Bless and Good Night

Thursday, November 13, 2008

7:25PM---yeah---she's out---

7:25pm---surgeon was ready to talk---a little bit of heart racing as we navigated through the hallways.

We were led to the little room....oh boy, hate the little room. But today...it was good news. The surgeon said he got everything he could see and feel and seemed to be pretty confident. It was pretty intricate and there was a few times when he thought of taking out left kidney, but he kept at it and feels pretty good about the surgery. He then directed us to the ICU so we could go see her.

We reached the elevators and a nurse was holding the one elevator for a patient. We anxiously awaited the second elevator which, of course, was going down instead of up. Me, the queen of patience, tried to stay calm and wondered if I could convince the nurse to let me take the elevator she was holding. Nope, they rolled out the patient...a little kid knocked out cold, God bless the child and the family. As they rolled by I told Mike, how cute...look she has tattoos on her head just like Li.....duh....it was Lisa!! So we rode the elevator up with the team. We followed them thru the halls to her room and watched for a while as they exchanged notes and got her situated. After watching for a while we asked if they were ready for us and they said we could wait in the waiting room.

So...we went and gathered our late night visitors and shared the news. After that, Alan and Sharon headed home; Mary Jo and Sam headed to the ICU waiting area with us. As we wandered the halls we ran into Frank who was also wandering. Now we sit and wait in the waiting area as they get her situated.

Yeah......it's not over....but we're one step closer....thank you, thank you, thank you for all the prayers....I believe they've been answered!

4:00 Update

Some of the tumor out....more to go...working hard

2:00

We're getting regular updates from the nurse in surgery that things are coming along as expected. That is to say that there's some painstakingly delicate dissecting taking place. Keep up the good work everyone and keep the positive energy and the prayers coming.

Last Night's Rally

video

9:44 AM---it has begun

Ok..so how surreal is this. Mike and I are eating breakfast in the cafeteria and 2 floors below lies our daughter sedated and getting prepped to undergo major surgery. It just seems weird that we are sitting here as if everything is so normal and she is going to endure so much....hmmm...it is the land of disassociation that I think lets me handle all of this.

Okay...Mike's brother Alan has joined us at the table and as he asks questions, I realize there may have been previous details left out of our blogs. They are only operating on the tumor in Lisa's stomach today. It's not big "spot" that they can cut out easily. It's more like a spiderweb or a vine. It's wrapped around/attached to many of the stomach organs (which I learned includes liver, gallbladder, intestine, spleen) so the surgery is pretty intricate and involves many vessels and arteries and such. The other areas where the cancer is at include her brain which at this point they are not considering surgery for, it has shrunk considerably and they are hoping future radiation takes care of the rest; an area in her back side (adrenal glands?) that they think may have died off from chemo; and the bone marrow which the only way to kill this would be the big radiation that will come after she recovers from surgery.

This morning they woke us up at 7:30 and we got ready to go. Lisa was in great spirits and seemed pretty calm. The "go lightly" made no difference thru the night, matter of fact she had the driest night ever at Motts....that's a bit odd. The wheelchair arrived and we were transported down to the pre-op. Lisa's pretty familiar with the place and asked for bubbles and a stuffed animal as soon as we rolled in. While I talked with the anesthesiologist, Lisa did the go-lightly in the bathroom with Mike...finally.

They came out, Lisa chose me to go into the room with her and I got to dress in the goof suit. They took us back to the OR....Lisa was alert and observant and asking questions. The staff was awesome got her comfortable, got Nemo running, showed her all the technology in the room. They used her broviach to give her the sedative, and while Lisa recognized the white medicine, it worked so fast she couldn't complain and managed to get out the words "Beat Cancer" before she went to sleep.

As I type this the nurse from OR called to let me know they got all the IV lines in and all the prep done and surgery started at about 9:45.

So, now we wait....

Wednesday, November 12, 2008

All States are Signed On

Yeah....thank you for the united effort and support....we now have someone in every state praying for us and different countries keep rolling in.

The emails, blog and phone calls have been awesome, each time I read or hear someone's message I smile, tear up a little bit and feel warmth shoot through me....all the wishes and prayers are helping us stay strong and be ready to put up a fight.

Lisa herself is in fighting shape. She's been marching around the hospital all day, practicing surgery on her medical doll and chanting her rally cry of "Live Strong, Beat Cancer"

She's not complaining she's hungry anymore, but that could be because we are force feeding her on the hour a nasty liquid called "go lightly" to make her go...uh, well, not so lightly; they want to clear out the colon and intestines. Unfortunately she's been doing this since 4:00 and we've not seen any action. Considering the doctor said she needs to be off all meds, foods and liquids at 12 midnight, I'm curious what they are going to do if she doesn't start "moving".

Surgery is scheduled for 8:30 tomorrow morning which means she'll probably be taken down for pre-op around 7:30....which means both Mike and I are spending the night, because it's Mike's normal night to stay and there is no way in heck I'd be able to leave my warm cozy bed and be her by 7:30 in the morning.

So...that's where we stand...we'll keep you all posted.

Tuesday, November 11, 2008

South Dakota...where are you?

We have 14 countries and every state but South Dakota represented in the guest log....how amazing and inspiring. Let's get South Dakota signed on and have a nationwide/international prayer event this Thursday for Lisa.

Set your watches for some prayer and reflection time on Thursday 11/13 at:
9:00 am EST things should be getting started
3:00 pm EST midway through
9:00pm EST hopefully wrapping things up.

We will do our best to keep the blog updated as we know many of you will be checking it...thank you for that!

Lisa was not happy by end of day today because she was soooooo hungry. She's not enjoying the clear liquid diet. Poor thing. Other than that, things are going fairly well. I'm not freaking out yet and while I'd like to chalk that up to maturity it's probably the 100.5 degree temp I've been fighting for two days keeping me mellow. Hopefully Lisa won't catch this bug....that would postpone surgery.

If all goes well, Lisa will be admitted to the hospital tomorrow to get her prepped for Thursday. I will update blog with info for those who want to stop by on Thursday...we could be in her room, waiting room, family resource center or chapel...so best to call cell phone if you are trying to find us...Linda 734-347-6540, Mike 248-207-6195.

Keep praying!

Monday, November 10, 2008

We got Rhode Island & Wyoming!

Yeah...one more state down. We're inching towards another milestone and need as many prayers as we can get!! As someone pointed out, not only do we have most of the states represented, we have many countries as well. This has turned into an international endeavor!! That's fine with us...prayer is the only thing keeping us strong.

Spread the word and take a moment of prayer on Thursday 11/13 at:
9:00 am EST things should be getting started
3:00 pm EST midway through
9:00pm EST hopefully wrapping things up.

Sunday, November 9, 2008

Alaska, Nebraska, Oklahoma, Rhode Island, South Dakota, Vermont, Wyoming

Need six more states to join us in our prayer requests and we will have someone from every state!!! Thursday we will want to be rocking the heavens with prayer for strength, courage, healing and acceptance. Tell all your friends and have them tell their friends....somebody has to know someone in the remaining states...have them log on to the guest book!

Come on Alaska, Nebraska, Oklahoma, Rhode Island, South Dakota, Vermont, Wyoming join us in prayer!

Saturday, November 8, 2008

Saturday 11/8

Mike here for the speedy quick update. Lisa's home and running around like her ol' self. She's a hoot, let me tell you.

I took Lisa for her PET scan and bone marrow biopsy on Thursday and that went well enough. On Thursday Linda and I took Lisa back to Mott to talk to her surgeon. The surgery is going to begin on 11/13, at 9:30 AM, and is scheduled for 12 hours. They may not need the entire 12 hours but as the surgeon explained, we're expecting a long, delicate and difficult surgery.
The tumor they are going after is definitely smaller than when originally diagnosed, probably won't fill a cup he said, but it has intertwined itself with many blood vessels, arteries, and veins that supply blood to the the organs in her abdomen. After listening to him explain the surgery, I understand the most difficult task to be detaching the tumor from the very delicate blood vessels. Damaging the blood vessels could/would compromise the organs they supply.

That's pretty much it. With that knowledge and the knowledge of Maranda's procedure, we had a lot to absorb this week. We're taking each day as it comes and living in the moment. Thanks for all the prayers and support. Mark your calendars for the 13th to send extra prayers and positive energy to Lisa and the medial team.

Thursday, November 6, 2008

Yeah...Lisa went home Wed night

Just to let everyone know, docs released Lisa last night. Apparently we had overstayed our welcome!! It's amazing how quickly they discharge you when you let your kid run up and down the halls willy-nilly. Just kidding!!!

Her counts were high enough and she was eating so they said we could go home and sleep in our own beds...yeah!! It's a good thing too because Lisa was astute enough to point out Tuesday night when we went to bed that..."Hey, you said if I ate, we could go home". Indeed I did, so I told her to keep eating, she did, and we got to home.

She goes back to hospital today as outpatient for her PET Scan and bone marrow biopsy. She should be home by this evening and then we go tommorrow to meet with her surgeons.

Tuesday, November 4, 2008

Update on Lisa and Maranda's Appt

Lisa woke up this morning and with a bit of bribing, threats and force I convinced her to eat. She took 5 bites of oatmeal that I forced on her and than later ate a pancake on her own.

Once breakfast was done, we got some bummer news...they put Lisa on isolation. Apparently her loose stools (gross) could be some type of virus that would put the other kids on chemo at risk. Hmm....perhaps the stool softener the docs prescribed the other day just to be safe is the culprit. Anyway, they are running tests on the samples (ewwwwwwww!!) and should know in 24 hours whether she is a threat to the low-immunity kids. That means we can walk the halls and even go outside...but she can't go to the playroom or touch anything sick kids might also touch until we know what's causing the condition. Fun. I guess this is good practice for the week of isolation we'll be up against with the radiation.

Other than that, things are looking up. She ate both lunch and dinner and had her EKG and Echo cardiogram done. Doctors and I agreed to stop the morphine and only give it to her on demand...I don't think we used it at all today. We are just using magic mouthwash and anti-nausea meds as needed. She's definitely doing much better If all continues to go well, on Thursday, Lisa will get her scan and be released from the hospital afterwards. We will come back and meet with surgeon on Friday and then plan for surgery next week 11/13 as planned.

Lisa hung out with a med buddy while Mike and I took Maranda to her appt. with the neurosurgeon. He confirmed that the chiari malformation caused they syrinx (the cyst in her spinal column) and the pressure from this caused the scoliosis. The solution...surgery....which 9/10 times will fix the syrinx problem and arrest the scoliosis. So, I won't write my own emotions into this...I'll give you the facts as I understand them and let you form your own conclusions. The surgery takes 3-4 hours and these are the steps as described to us....

The surgery is performed under general anesthesia. An area of hair about 2 inches wide is shaved at the back of the head (Maranda will be able to keep the rest of her hair so it will probably cover up the shaving/incision spot). A straight incision is created from the occipital area at the back of the head to upper neck. Bone is removed at the base of the back of the skull and from the back part of the cervical one (C1) vertebrae.

They will then open up the dura, the outer covering of the brain, to assess the position of the cerebellar tonsils, the degree of crowding and the drainage path for spinal fluid. If necessary, the tips of the cerebellar tonsils are cauterized to create more room in the area, remove the crowding, and allow more normal flow of spinal fluid. A patch of tissue is then sewn to the edges of the open dura to enlarge the dural sac. The tissues are then closed with stitches and staples are used to close the skin.

After surgery, there will be a one-night stay in ICU for close observation. The area of the neck incision is generally stiff and sore (really sore!) after surgery. Pain medication is usually given with a patient-controlled infusion machine. Generally, you may sit in a chair by the following day and walk with assistance. The hospital stay is generally 2 to 3 days.

Risks of surgery include infection (1/100), leakage of spinal fluid (1/50) and neurological injury such as hemorrhage, brain damage or stroke (very unlikely).

So...that's the info we received today. It seems a bit unreal and much more frightening when I'm typing it than it was having the doctors explain it. They are so calm and matter-of-fact that they make it seem like this is a common, everyday occurrence. Doc says he does 25 of these surgeries a year...that doesn't seem like a whole lot. I pray that the doctors have the skills to match their confidence and that Maranda comes out of this surgery better than when she went in.

We are looking to coordinate Maranda's surgery with one of Lisa's stay...it's a little tough because Lisa's stays can very easily be thrown off. We are aiming to schedule Maranda's surgery for sometime in the first two weeks of December, hopefully to coincide with Lisa's radiation treatment....UGH!!

Monday, November 3, 2008

Still here



We're still at Motts. Can't go home until Lisa's bloodcounts go up and she can eat. She's still on Morphine and she hasn't eaten since Thursday. Even so, she still is up and around and looks better each day.

Her scan for tomorrow was cancelled because of the low blood counts. At this point, the test and surgery are each being bumped out a week.

Maranda is scheduled to see neurosurgeon tomorrow....I'm prepare to hear the words surgery and in-patient....other than that I'm not sure what to expect.

Lisa G. and Clifford helped make the day more bearable today. Mike was supposed to come relieve me tonight, but Thomas got sick and had to come home for school so Mike did sick duty at home...ugh!

So, tomorrow's another day...I pray that Lisa starts eating, her pain subsides and that the news on Maranda is bearable and has an easy, straightforward plan of action!

Sunday, November 2, 2008

Thank you visitors!





Lisa and I had a pizza party on Sat with Grandma and Grandpa Y., Aunt Sam, Jacob and Alex. Today, Aunt Delphine and Uncle Gerald came by and kept us company. And the Holowicki family stopped by and played until early evening. It was nice to have visitors and definitely made the time go by quicker and the day much more pleasant.

Lisa is getting around, but she's not at her normal speed. The "mouth" sores run throughout her GI tract and she is in pain, hasn't eaten for three days and still hard to understand when she talks. She is on a low dose of continuous morphine and when the pain gets really bad we merely press a button to give her an additional dose.

As Mike stated, her counts are still low and until those come back up and she can eat we will be at Motts. There is a chance this can bump her scans out as well as the surgery date....it's just a waiting game until she gets back up to speed.

It's also a bit frightening because this is still the "easy" part of her treatment. Phase II is going to be much more aggressive as we try to beat this cancer. So, we just keep taking it day by day and we pray.

It's Sunday and we're still at Mott's

Mike here - Looks like we'll be here through Tuesday now. Lisa's white blood cell count is still low, and because of the mouth sores she's still not eating or drinking. That said she's still pretty much herself, albeit a throttled back version.
She is due for a PET Scan on Tuesday, but that will only happen if the all the blood counts are back where they should be. Thanks for checking in.