Maintain Quality of Life

Mike and I met with the doctor yesterday just to make sure we understood everything.

Here are the cold hard facts:

• 70 out of 100 neuroblastoma pts have a period of remission.
• Of those 70, 35 will relapse (later you relapse the better; Lisa is average time-frame)
• Out of those 35, 20 -30% will go into remission for a second time.

Without treatment---most likely 3 mos to live
With treatment---most likely 12-18 mos to live (hopefully most of that will be outpatient treatments, however there is always risk of fever, infection, etc)

Treatments are usually tolerated pretty well and given Lisa's response to chemo the first time, they are hopeful that treatments will keep cancer from progressing too rapidly. There are various treatments we can try if she is not responding to what they start her on....including MIBG radiation (the 3 day treatment she does in isolation by herself which we are considering for April).

The doctor reiterated that "There is no proven cure. The goal is to attempt to keep Lisa living while maintaining her quality of life. If/when cancer gets too progressive or Lisa is showing no response to treatment, then we would stop chemo and begin pain maintenance"

Lisa is still showing no outwardly signs of cancer...if she is able to maintain this level of health once she starts treatments, maybe she will be one who beats the odds and lives a lot longer than average.

She looks so good, it's hard to believe she is battling this disease. I feel like we are no longer "fighting cancer" but we are "living with cancer". I haven't quite figured out what that means to me, I just know my perspective is changing and I don't know what my priorities are anymore. I find myself confused about what I should be focusing on or doing with my time on a day to day basis.

I think about the question "what would you do if you had one year to live?" I'm not sure. Would I throw caution to the wind and do anything I wanted whenever I wanted, or would I practice some restraint, knowing that one year could stretch out longer and I wouldn't want to find that I still had time left but had used up all my resources and was penniless. AND...why does it take a time limit for me to start LIVING, why am I saving, planning, waiting.....why don't I embrace life and squeeze as much living out of each day is possible. Why do I ask why? Where is my balance?

Merry Christmas

Kicking off the Christmas Season

Well, our Christmas season has gotten off to a great start. The kids got their first Christmas gifts on Friday when we celebrated the season with my co-workers. My boss, better known as "Santa Sally" was most generous and the kids were thrilled with the gifts she got them. They spent most of Sat. morning playing their new DS games and doing the arts and crafts kits from Sally.

Saturday was the 55th annual McMaster Christmas party. We got to celebrate with the aunts, uncles, and cousins and Santa made his guest appearance. Lisa has really grown up this year. She sat patiently waiting for her name to be called and didn't threaten any other child whose gift might have been a baby doll. She was rewarded with two new baby dolls of her own once she took her spot on Santa's lap. She carried a doll under each arm for the next 48 hours.

Today we had a very special visit. Belle, Jasmine and Sleeping Beauty came to our house. Lisa's Aunt Mary had shared news of Lisa's relapse with another teacher---Laurie Zaker---at Allen Park HighSchool where they both teach. Ms. Zaker shared the information with her classes. The student's decided that something nice should be done for this little girl whom they never met. They and Ms. Zaker brainstormed about what they could do and came up with the idea of of having some princesses visit. They knew that a fellow-student and her friends had dressed up as princesses before for a fund raiser and arranged for them to play the princess role once again. Ms. Zaker organized the event and tonight, she, her daughter and three beautiful young ladies took time this evening to come visit and play with Lisa. They came dressed as princesses and bearing gifts that were bought with donations from Ms. Zaker's students. What a wonderful gesture of generosity, love and the real spirit of Christmas...a big thank you to Ms. Zaker and all her students!! I'm actually can't find the words to express what I'm feeling...that a group of high-school students would give so generously to a child they never met...this is the good that comes with cancer, this is what restores hope, this is what happens when people work together, this is a community that becomes closer to one another. I think the gift that moved me the most tonight was a big sheet of paper signed by all the students who donated towards the gifts for Lisa and/or said a prayer for her. It is a visual reminder of how many people are hoping and praying for Lisa. I see this and I think maybe, just maybe, God will hear all the prayers for her and will provide us a miracle that will cure her body of all cancer and allow her to live a long life one in which cancer is long-lost memory. I can't imagine this story ending any other way, but I know the odds are against us, so I try my best to enjoy every moment and avoid thinking about the treatments that will start soon. Things are bound to get worse, but right now they are pretty good, so NOW is the time to enjoy and celebrate the Christmas Season before it passes us by!

Things going much better

Lisa was up at 5 am this morning and ready to go to school. She was excited and back to her normal bouncy self. She went to school and was so excited to tell us all about the cookie she made in school when she got home.

There truly is a lesson to be learned here....I'm still struggling to make sense of it...but I'm sure it has something to do with living life so abundantly that everything makes you wiggle, giggle or smile and everything is awesome.

Ahhh, to be five again...maybe that's the secret...being five you don't know to worry about the future or be sad about the past you only really think about what's going on right now!

Walking like an old lady

Lisa is quite the trooper. She's been doped up on pain killers since surgery on Thursday. There was quite a bit of swelling and pain. She looked like she had a goiter on her neck. She wasn't able to turn her head very much and kept it cocked to the side. Friday morning, she uttered "I'm walking like an old lady". That's pretty much what she looked like, just give her a cane she'd be all set.

Friday night, Mark and Malinda came over to help us decorate. Lisa was all for it and wasn't going to let the pain get in the way. She shuffled back and forth grabbing ornaments and decorations to set out. She loved having the house all lit up and the Christmas music playing.

Saturday we spent just hanging around the house and Lisa spent a good deal of time napping. Today, she's moving a bit better and I'm hoping she'll be able to go to school tomorrow. I just want her to have a "normal" life...I know that sounds a bit silly considering the circumstances, but I just want her to have friends her age and experience school and learning and singing and playing and art projects with glitter...things that 5 year olds are supposed to be doing.

I find myself in a bit of a funk after Christmas shopping. My kids list are a bit unrealistic. They are asking for things like cell phones, computers, ticket to Florida...uhh...don't think so, if anyone's getting those things it's going to be me. Even buying for Lisa is hard; besides the computer, DS, cell phone, she wants baby dolls. Go figure. Unfortunately, we seem to have more baby dolls on our shelves at home then Target and Meijers combined! Other things I could think to buy for Lisa involved items that wouldn't be used until summer...a bicycle, swim toys, monogrammed swim towel.... and I found myself wondering if she would ever get a chance to use them.

So, with those thoughts going thru my head and with no list to go by, I found myself going up and down the store aisles and realizing that we practically have everything out there in one form or another. We really do have so much, I can't seem to bring myself to spend money on another "thing" that will just end up in the basement. Perhaps the reason I'm struggling with the shopping is because deep down I know that what we really want for Christmas, money can't buy.
Bah Humbug. Sorry to be such a downer, hope all of you are having cheerier thoughts than I am!

Done in record time.

They scheduled the surgery for 5 hours. Surgeon said realistically it would be more like 2 hours. They were done in 1.5 hours. Lisa was in today for surgery to biopsy the mass in her supraclavicular region and have her port/line put back in for easy access during chemo.

She took everything in stride even when her blood draw went haywire. After waiting a half-hour for our turn, lab sent us to clinic to see if they could draw blood from her IV line so we wouldn’t have to stick her. Unfortunately, while they could flush the line, they could not draw the blood out. They then attempted to take the blood out of her other arm; they thought they were going to be successful because the needle went right in they, but just couldn’t get the blood to come out. They adjusted the needle with wiggles and more little sticks believing they were going to get the blood, but no go, they ended up “blowing” the vein. They bandaged her up and sent us back to the lab where they discovered all we really needed was a finger prick and enough blood to get her counts and type. Lisa was a little nervous about this, but did fine. The blood was still a little slow coming out, even with the tech was milking Lisa’s finger. Lisa gave the command for the blood to “come out” and it started dripping. A few more commands and they had what they needed.

We headed off for pre-op. There was some confusion as to what exactly was being done today and once again I was reminded how important it is to pay attention, know what’s supposed to be happening and stick to your guns. Three or four calls went back and fourth between surgeons and docs before they confirmed what I told them, that bone marrow biopsy was NOT being done today, but would be done in January when we redo scans.

Yes, we will be redoing scans in January. Mike and I have decided it is in everyone’s best interest to push chemo to January. While the doctor had some good arguments for doing it right now, the additional stress and the possibility of Lisa being ill for Christmas was not something Mike and I wanted to endure or put the other kids thru this holiday season. Because of the way the studies and cancer protocols are run, scans expire after a month. This means that for Lisa to be eligible for the chemo trial in Jan, she will need to have her scans redone in Jan. A little screwy, I know, but that’s the way it works.

As for Maranda, second opinion supported doing spinal fusion. We will plan to do this once school lets out, although that’s not going to make for the best summer vacation. Vote is still out on whether we will go with Motts or Children’s….lots of good pros/cons for both….leaning towards Motts doctor only because we are more familiar with system and after care procedures.

So that is it for now…..hope everyone is doing well and that you are enjoying the holiday season and countdown to Christmas!

4am...really...geez, if it's not one thing.....

Really...at this point nothing surprises me. 4am I'm woken up by this incessant beeping/chirping. I sit up in bed groggily and try to figure out where the sound is coming from. Not quite an alarm clock sound, sorta like a smoke detector, but not as annoying, sounds like the computer power source when we lose power, but none of the clocks are blinking....arrrggghhhh guess I better get up and check it out.

Follow the beeps until I trace it to the Carbon monoxide detector. Argh, stupid thing, probably needs battery. Can't quite it off wall, can't silence the thing....arghhhhh.....too early...can't this wait until daylight. Finally get it off wall. Look more closely...hey, it's not the battery light, it's the move to fresh air light. Really? What are the chances? It's us, guess chances are good. Ok, focus....what' the darn thing say on the directions? "If alarm signals sound, silence button, call 911, move to fresh air". Really?! REAlly?! Crap!

I get Chrissy up seeing as she is closest to source. She stands straight up in her bunk, bed head going, looks at clock and says...but, but it's only 4:00. I tell her very calmly to move to front door. I open a window as I go. I move thru the house scratching my head....hmmm...we both feel fine, the alarm is beeping away, but carbon monoxide is the "silent" killer. Crap....I go get Maranda up. She immediately starts to panic. I get her to the front door. I read the alarm info outloud to girls....can't really believe we need to call 911. Figure I'll be smart and test battery...shows a full charge. Looks like we call 911. I hope they don't come down the street with the sirens blaring. Meanwhile Thomas and Lisa join us at the front door. The kids are lying curled up in blankets with the door propped. I tell them to all stand up because if the fire dept pulls up and sees them laying like that they are going to think that we've all keeled over.

Fire Dept comes. They turn up the heat and run the hot water heater. They get readings btwn 4 and 6. Sounds reasonable to me. They say they should have a "0" reading, they have to call gas company. Oh goody. Fire dept waits around for a while then has to go, tell me gas company should be here shortly. Gas dept gets here about 5:20. They turn up the heat and run the hot water heater. Their equipment gets same low reading...they get out different sensors and test and determine it's from the fireplace from the fire two days ago. Say what? I asked fire dept about that they said it wouldn't be from that. Gas guys assure me..."yah, ya burn a fire, house is sealed up tight, the detectors go off." Really? A day later? "Yep...how old is the detector?" Uh, probably at least 5 years. "Ya probably want to replace that...get a plug-in kind and put it where ever you are, in your room, watching tv" Really? Not near the basement "Nah, that's where the equipment is...ya want it near you" Really....I thought the point was to have it near the equipment so it picks up the poisonous gas as soon as possible before it circulates. "No, by you, you want to have it by you...everything checks out" And by 5:30 they were gone.

Interestingly enough Mike escaped to the lake house tonight...let's just say the fireman started to look a little suspicious when they were asking about how old the furnace was and the detector and other house specific things which I kept answering I think....but my husband would know... "Uh, mam...where is your husband, did he just leave for work, perhaps the car running in the garage set off the detector" Oh...no, he's been gone for hours. "Would that be right after he sealed the place up tight, turned up the heat, water heater and dryer and all other gas appliances". Hahahahahahaha....hmmm?!

Choices

Disney trip was fabulous. I was able to truly embrace “fantasyland” and put all my worries away. The return to reality has been a bit rough. I’ve spent the past week talking with doctors, scheduling appts, surfing the internet for answers that just don’t exist and holding the tears and forwarding thinking in check. I feel sorry for all my children who have to have this stress in their young lives; it just seem so unfair that they have to bear all that they’ve been thru… abuse, neglect, adoption. illness, , ….most people don’t suffer any of these things, let alone all of them. It took me until I’d lived on this earth 30+ years to experience any of it and these kids have all had these issues touch their lives in one way or another before any of them are even teens.

I feel as if my family has had this horrific thing thrust upon us and that we have no choices…but the truth of the matter is, there is always a choice. I can choose to fight or not fight, choose to stay or run far far away, choose to learn more or choose to bury my head in the sand. Many friends and family have assured me I am the type to pick all the first choices I think how could you do otherwise, but they assure me some people would pick the second option but that I am not that type. So I will latch on to their belief in me that I’m strong and a fighter and I will continue to fight, stay with my family and seek knowledge. It is not easy though, it is damn near traumatizing at times. Mike calls it the abyss…we are just staring into it wondering how the hell we got here and what to we do next.

The choices we’ve been presented with our grim. Lisa’s doc called me last night. Because of some scheduling issues they were not able to set the biopsies up this week. They will be done next week. They are 99% certain that it is neuroblastoma, but need the biopsies to confirm. If their suspicions are correct, first plan of action will be a round of chemo done outpatient for one week and three days of the next week. The problem with this is timing. IF they can get all test results back next week, we could start chemo as early as Dec 14 with treatments every day that week and 3 days the following week including Christmas Eve. Lisa most likely would feel like hell from the chemo and be too sick to enjoy, as the doctor said, “what might be her last Christmas”. Sobering words, eh, so the choice seems easy right. Forego the chemo until after Christmas. Welllll, it’s seems as there are protocol standards around that. In order for her to begin chemo she has to have scans that are less than 30 days old, her scans expire 12/16. So, if we push the chemo out until Jan, she will need to have scans done again and because of the holiday and schedules scans most likely won’t be done until second week of January pushing her chemo out until Jan 14, a full month later, making us feel like we’re playing with fire, because we know just how fast this cancer can spread.

Maranda’s situation, while not life threatening has also presented us with choices. We went for a second opinion at Children’s Hospital. This doctor agreed our first doctor’s recommendation. Maranda needs to meet with Neurosurgeon again to make sure that the decompression surgery does not need to be done again. Once that is verified, she will need spinal fusion. He was a little less alarming suggesting we wait three more months to see how much her curve has changed, but cautioned strongly that based on past xrays, the curve will most likely continue to curve, because she is on the brink of her growing phase and that’s normally when you see the big increases. Soooo….seems like this decision has been made for us. However, we need to choose which doctor. Do we go with the one at Motts who doesn’t have much bedside manner, makes Maranda feel very uncomfortable, BUT seems very well educated, revered in her field, works at a hospital that we are thoroughly familiar with and could very possibly be at with Lisa at the time of Maranda’s surgery OR do we go with the one at Children’s who was very personable, we liked him right away, is equally educated, very confident and works at a hospital further away but known for specializing with children.

So these are the things I have been thinking about this week. Some pretty big choices for Mike and I to make. We try to keep the rest of the world in focus, but it is a bit difficult. I was stunned to look at the calendar and realize there are only 20 days until Christmas. Normally, I would just wish Christmas would hurry up and get here and be over so I could get past the stress of the season and start counting the days until spring. But I realize, that this could be Lisa’s last (I guess it could be anybody’s last Christmas) and that as my Mom used to tell me when I was little I shouldn’t be “wishing away my life”.

We only get to live once and right now it’s best to do it slowly and moment by moment and be thankful that my family feels good, is happy, laughing, has clothes, food and shelter…because for this moment that is everything AND I have a choice....I can choose to think happy thoughts and enjoy my time with my family or I can choose to worry about a future that I have no control over and feel miserable. The choice, at the moment, is pretty obvious to me.

Off to have some fun....you have some to!

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

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!

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?!

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!

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

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.

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

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

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 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 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.

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!

Picking Pumpkin's

Picking Punpkins last Sunday. Lisa picked an iddy bitty one. We cleaned/carved them at the neighbors house that afternoon.

Labs Results In

Mike here again:

Lisa's most recent labs are back now.
The numbers are about the same as last time, "so I think she looks great!" - Dr. Carla

Although Lisa is fighting a stuffy nose and a cough she's doing just fine. We've all been busy with school and the after school activities of the four youngsters. The house is a mess, the parents are tired... life is good. Life is great.

We're about 5 weeks away from Lisa's trip to Disney and starting to get excited. We're leaving on Thanksgiving Day. With those 4 messy, tiring kids I was telling you about. On one of the busiest traveling days of the year. Oh what joy. At least we scored non-stop tickets. It's going to be great and we can't wait.

The Interview

Q: What do you think about all these people reading your blog.
A: "I don't know..." [asks again] shrugs, "um Halloween time"

Q: How do you feel?
A: "Happy"

Q: Do you like school?
A: "yeah"

Q: What do you like best about school?
A: "I don't know, music"

Q: What do you like about getting up early in the morning and going to school?
A: "Going on the bus" [Lisa remarks as dad types - "Hey, my dad knows how to spell bus!"] [Dad thinks to himself - "Thank God for spellchecker."]

Q: Who's the best cooker in the whole wide world?
A: "Daddy"

There you have it folks. The 8:00 AM interview with her highness.

Latest Lab Results Are In

The urine tests for Lisa are back and actually better than they were before. The HVA is 12 and was 13 and the VMA is <9 which is as low as the test will read. All the blood looks fine too. Liver enzymes are still slightly high, but not terrible. Keep taking the actigall for now.
AST (AST) 43 5-60 IU/L
ALT (ALT) 41 H 7-35 IU/

Good news! Thank you everyone for keeping Lisa in your prayers. Lisa is loving school and kindergarten crew! She had a dentist appointment yesterday with cousin Dr. Therese. She had a shot and filling and didn't wiggle hardly at all. It really put the pressure on her big sister Maranda to stay strong in the seat next to her while she had her own fillings filled. Way to go Lisa!

Happy 12th Birthday to Maranda

First Day of Kindergarten

Lisa ran off to the bus stop just moments ago with her big sister Christina, while Maranda and Thomas caught their ride 30 minutes earlier. Lisa was very excited and repeated the line from the movie Finding Nemo, "First day of school, first day of school, come on Dad get up, first day of school!"

Happy Birthday - Lisa turns 5!

Mike here. A finer morning I can't imagine. A finer birthday I can't imagine.




Lisa's "Happy Birthday" call from G-ma and G-Pa Yesh











Lisa eating ice cream on her last day of being 4.

Decadent

It has been one week since we left home. I can honestly say, I’m happy not doing anything at all. In the few instances when guilt starts to trickle in and I feel the need to do “something”, I simply open a book or play in the surf with the kids. It is pure decadence and I would be happy to have it go on forever. I love the weather, the sea, the sun, the surf. This is a good place to be. It is hard to believe that one year ago, Lisa was fighting for her life and was bald (I just looked at some pictures and amazingly, I forgot how bald she was). I guess we truly did get thru that time moment by moment because now, looking back, it seems impossible that we endured all that we did. How could she have been so ill? I just can’t believe it all happened. I look at her now and find it infeasible to believe she won’t beat the odds even though they are against her. Why does being by the ocean make life seem so simple and fun-filled? Is there a way to capture this feeling of contentment and hope? If there is, I surely hope I find the way to do it and that Lisa continues to be a survivor.


You can't really see her waves here, but the back of her head is definitely curling up. For more pictures go to http://welovelisa.shutterfly.com/

Turtles!

Sunday while visiting family staying down the beach from us, we chanced across the turtle hospital staff releasing 90 newly hatched sea turtles. The nest failed to hatch on its own during the full moon a few days ago so they uncovered it, took the eggs back to the hospital, "shelled" the turtles for lack of a better word, and were in the process of releasing them while we were taking our evening stroll. There were about 70 people lined along the runway (It looked like some sort of cult) they smoothed out for the turtles and while one worker stood in the surf holding a flashlight, simulating the full moon, a few others were prodding them along the runway. The photo above is one borrowed and not from the night of the release. "Go squirt! You totally rock dude!"

Link to the sea turtle hospital - http://www.seaturtlehospital.org/photoalb.html

We've actually seen nests hatch naturally in the past and it's always been a brief event lasting about 15 minutes. These little guys in this group were definitely in no hurry. We were there for about 40 minutes before they all crawled in. The down side of that is that those turtles had better show a little more initiative in the water because there are plenty of predators waiting for them and the odds are against them. The up side is that the kids had a long time to take in the experience. Seeing how small they are as hatching's really made them see just how vulnerable they are.

Lisa's been having a blast. I promise pictures will be coming soon. 50 SPF all the way for this kid. Fits right in with the rest of the McMaster's in that regard. Thomas and Chrissy are already a golden brown using the same lotion.

Hurricane Bill was a no factor for us if you don't count the high surf Friday and Saturday. We might have had a rain shower here or there complements of Bill but that's about it. It's been 90 degrees just about every day with very high humidity. With the strong inland breeze and the crashing waves and awesome view it's quite tolerable. Quite.

Other highlights? The water is about 80 degrees and even Chrissy can stay in as long as she wants without getting cold. The kids enjoy boogie boarding and playing in the waves for hours each day. Digging up baby clams and sand bugs is another pastime. Sea you soon!

All the results are back from the last set of scans and tests, and as of a couple weeks ago we can say that Lisa's cancer is in remission. Hard to believe I can even type that out after the year and half we've had.
We've been trying our best to make up for the lost time by packing as much fun stuff in as we can. These days we're on the road South to Topsail Island, North Carolina. We're in Beckley West Virgina today. We're looking at an leisurely 8 hour Easterly drive today that should put us on the beach for the next two weeks.
We should have plenty of time to blog so update's will be a little more regular the next couple weeks. I'll be sure to include some pics of our curly headed cutie.
Yes, the curls are coming back!

Yeah they are back!

Yeah the kids are back and full of smiles, songs and stories. I have to confess.. I cheated….I couldn’t last the whole week. I called the camp counselor on Tuesday and she told me the kids were having a great time. She also went on to tell me how wonderful they are and that Thomas had been given the “campers award” the first two days. One for being a good friend, the other for eating a worm!! Wow, no wonder kids don’t like camp food. Apparently it was nature day and they got to eat things like cattails and white pine bark and other non-toxic thing found in the woods. Thomas was willing to try a worm with the counselor (and he complains about my cooking!) so that night the kids voted him most likely to try different foods (the irony of this is just too much for me to even write about). Now that they are home we have verified that Tom ate a worm…he told us the secret…”You just swallow, don’t chew it.” Ah, good to know. All the kids are happy and well and ready to go back for the winter camping.

We have good news from Lisa’s docs…so far all test from last week have come back clean. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We are still waiting on the bone marrow, but I’m feeling pretty positive it will be good. We are ecstatic and focusing on how to enjoy life and count our blessings daily. God sent us a reminder today not to take life for granted. As we were picking up the kids from camp, we saw one of the teenagers we know from Motts. Her family was there picking up her sister who had been at camp. Sadly, she is not well. Her cancer is back and pretty fierce. We had met her a year ago during one of Lisa’s first treatments. Emma was on the upswing and had just returned from camp. While Lisa was going thru most of her treatments last fall, Emma was in remission. When Lisa was finishing up bone marrow transplant, Emma was fighting cancer again and getting ready for bone marrow transplant. Her BMT gave her 18 days of clean scans, but after that the cancer was back and now is taking it’s toll. While Emma puts on a good front, it is a heart-breaking thing. She was released from the hospital today and given doses of morphine so she could come to pick her sister up from camp and say hi to her friends. They stayed for only a short time before going back to the hospital. It is a heart-breaking thing to see these young people faced with this ravaging illness. Please offer up a prayer for Emma and her family.

As for us, we are very blessed and pray that God’s plan includes a long, pain free life for Lisa and all of our children.

P.S. Four kids is a lot harder to manage than one! I forgot how noisy and how much commotion there is when all of them are home.

Pins and Needles

We had a great weekend. Started with a trip to Michigan Adventure on Thursday. As we pulled into the parking lot along side of Shivering Timbers roller coaster, Lisa echoed her brother and sisters excitement and joined in the chorus of "I love roller coasters". Once we entered the park, Dad took the big kids to the first roller coaster and Mom took Lisa to the little one. We boarded immediately and Lisa cried with glee "I love this ride". Within two seconds of the roller coaster moving she started screaming "I hate this....I want Daddy... make it stop". As the 15 second ride rolled into the "station" and I worked to convince her it was okay, her screaming escalated as we rolled by the station for the second round on the loop. She survived and was a bit more cautious getting on the car, boat and plane rides that go round in a circle and that most kids beep the horn continuously....not Lisa....she held on for dear life. She apparently had gotten used to the rides because once Mike and I switched and I took the kids to the corkscrew, Mike took her to the "big" roller coaster. She loved it and didn't scream at all was the report...what?! I think it's just that selective hearing Mike uses.

After Michigan adventure we headed to the Double JJ resort in Rothbury compliments of a good friend who has a place there. While the place is still not fully operating because of new ownership, our kids enjoyed it immensely. There was a swimming pool and a few barn animals to feed and that's all that the kids need to have a good time. The older ones were bummed they didn't get to be led in a circle on the pony....Lisa....she screamed her whole way around. Let's just say Lisa needs a lot more "getting used to the idea" time than others.

Friday we went to Silver Lake Sand dunes and enjoyed the scenery via the jeep ride tour. Saturday on our way home we stopped at Pere Marquette beach on Lake Michigan. It was awesome....the big water and rolling waves instilled calmness and peace in me. I was trying to convince the rest that we should stay for another day or two. I was overrulled..bummer...I could use some more peace. (By the looks of the picture...Lisa was enjoying the peace too! Is that a curl forming in her hair?)

The 3 older kids are off at camp now for the week. A first time experience for Maranda. I find myself constantly doing mental checks wondering how they are doing and what they are up to. I'm ready to go and "volunteer" at the camp and join in the fun for a day. I've been told, I've got to let the kids have their fun and let them grow up....hmmmm....why?!

Lisa is doing well. Today is the first day of a series of 3 day tests and scans. I have to admit I'm on pins and needles. Every ounce of me believes that things are going to come back fine. But after having the rug pulled out from under me a little over a year ago, I'm a little less trustworthy of my intuition.

So....please throw a few extra prayers out.....we are so enjoying our freedom and not having treatments...I don't want it to ever end.

Not much happening

Not much to report this week...last Friday we went to the "spray park" and on Sat we watch the skys and the Blue Angels perform from a friend's yard.

I think I've almost managed to get all of us scheduled and caught up on appts for physicals, dentists, eye docs and all the other things that were overlooked last summer.

We plan on heading up to Michigan Adventure on Thursday and spending some time in Muskegon area this weekend. The three older kids go to camp next week and Lisa goes for scans.

So, not much happening...but that's okay...life is good!

Chocolate not Vanilla Ice Cream

Things are going well. Lisa is a bit more grumpy and tired than usual. Doctors attribute that to her meds....they weren't sure what to say about me being grumpy and tired; it appears to be a personality glitch:)

Lisa's office visit went well today. She only had to give two vials of blood. It was such a small amount compared to prior draws, Lisa didn't even get a chance to help out. We seem to have the blood draw down pat. Count "1-2-3", yell "ow", needle goes in, no tears come out, collect tubes of blood, get stickers and suckers.

Doc said she looks good and the scans and biopsy at the end of the month will give us a much better picture. As for the elevated numbers in her urine last month, the doctor said there is a small chance that eating vanilla ice cream could have elevated them. Vanilla ice cream? Really?! We all know Lisa loves to eat and ice cream has become her daily treat (or two). Matter of fact, she's been known to sneak off to our neighbors at the lake and mooch some ice cream only to come home with her face covered and tell us "nooooo....I didn't have ice cream". Lisa doesn't count it as ice cream if it comes on a stick, only if it comes in a bowl.

I'm hoping she was eating lots of vanilla ice cream before that test a few weeks ago. To my knowledge, it's been mostly chocolate ice cream this week, so hopefully the results from today's urine will come back okay.

So, that's it for now. Life goes on, but it will be with chocolate, not vanilla, ice cream.

Happy 4th of July

Hope everyone is having a great holiday and taking some time to enjoy life.

We've had a good past few weeks and we've been doing my best to take the kids on outings to make up for last summer. We've been to Camp Dearborn, went bowling last week and yesterday we took the kids to the African Safari in OH. They all enjoyed themselves and Lisa loved the animals. She even got picked to help with one of the magic tricks on stage and she was in one of her "performing" modes and marched up to the stage as she called out "they want me Mom."

Still trying to stay positive and upbeat and believe Lisa has beat this monster. Unfortunately, I still worry and become concerned when Lisa says her leg hurts or I notice she seems to be tripping a lot....I guess you just can't erase those memories even though you have the best intentions to move on. The latest email from her doctor has also raised my anxiety level. She wrote:

Just wanted to let you know that Lisa's urine tests finally came back late last week. They were both about the same as they have been for the previous several checks, but they are a little higher than we'd really like. 16.1 was the HVA with the normal cut off being 16. We don't need to do anything different because the scans would be the next step. We already have those scheduled in a few weeks. I'm going to add a bone marrow biopsy as well.So you are not allowed to get more worried yet, but I'll let you know if you should later!!

(For more info on the test and what it indicates, click here.)

ok...so the doctor and I joke about the words "more worried" but they are pretty accurate. The worry seems to always be there, I just need to keep it in check to make sure I don't become paranoid. I guess that goes with being a caregiver for anyone or thing....everyone worries about others, whether it's wondering if their child is safe biking alone to a friends house or if their dog is getting arthritis.....you just have to focus on the positive and try not to make yourself crazy with everything that could go wrong. Sooooooooo....even though Lisa's urine tests have increased, I have to stay focused on the positive. She looks good, she's eating, she's happy and she's having fun. Even if the cancer is re-emerging, there isn't one damn thing I could be doing right now to change things....except pray...which I do....every day.

On that note, I will end this downward spiral of negativity and ask that all you readers go out and enjoy the day, focus on the positive and, as always, offer up an extra prayer for Lisa.

Thanks and Happy 4th!

Happy 10th Birthday to Chrissy

We've had a wonderful week and the kids have thoroughly enjoyed being out of school and staying at the lake. Lots of fish, turtles, and snails have been caught. Thank you to the Jones' family who spent the week with us and helped us get things looking spiffy for summer rentals.

Lisa is doing well. Her appt with onc docs last week showed no changes in bloodwork or scans which is a good thing. She is showing some hearing loss in her right ear, but we think that is from fluid in her ear which has been a problem for her since before she was a year old. Looks like it will be back to the ear specialist to get tubes put in again.

Chrissy had a day of just hanging out and listening to her new country cd (ugh!) while the adults shoveled sand. She got the gifts she asked for including an mp3 player loaded with country music (double ugh!) and the ability to totally tune me out! We ended the day with cake, candles and presents and very tired, but very content, people.

Life is good.

Subject: No restrictions

Below is the email I received from Lisa's BMT doctor on Friday:

Sent: Friday, June 5, 2009 8:55:36 AM
Subject: Re: No restrictions? Lisa McMaster

Dear Linda: After an autologous transplant, immunity is typically back to normal somewhat before day 100. I do not recommend any restrictions. Enjoy the summer. Dr. Levine

It sounds as if we can unleash Lisa on the world...unless you take into account what the the oncology team email response, which was "ah...the difference in doctors is amazing isn't it!! Rajen said no way and John says fine. I love it"

So...we've basically decided to do what any prudent parent does and that's to do what we think best. We have taken Lisa into the "public" world but are still exercising caution and limiting her to areas that are outdoors. If we are indoors, we try to stay away from crowds and if anyone appears sick we get the heck away from them. Since Thursday, Lisa has been to the school circus, spent an hour at preschool, went to church, cheered Chrissy on at her soccer game (saw Christina get her first goal!! yeah!!) and gone shopping. Shopping entailed, "just a few more minutes" and "let's look over here". It's as if she's making up for lost time and she is definitely loving every minute of it.

Summer looks very promising and I'm doing my best to make sure we all have some fun and get to go a few places.

On another note...my mom's treatment is going well and I ask that those of you reading send up a prayer for my Dad who is having minor surgery (is it ever really minor) today. Also, a quick prayer for a niece of my who spent a few days in the hospital last week due to an allergic reaction but is recovering nicely.

Have a great day!

Reader's Digest Moment

I was working at my computer and trying to maintain my composure as Lisa kept interrupting my train of thought and asking questions. I'd asked her a few times to "give me a minute" or "let Mommy finish" but she just kept conversing and asking questions. Finally in desperation, I looked up and said very loudly:

"Jesus, please let Lisa be quiet so I can finish my work"

To which Lisa promptly followed in a loud voice with eyes looking upward:

"Jesus, please let Mommy finish her work so we can play"

Last Tuesday Lisa had a CT scan and you'll be happy to hear that there were no changes at all from her last scan. Yea! She's still doing great as far as I can tell and her hair continues to grow. While we're just about through with the 100 days of "isolation" after the bone marrow transplant, we've been told that it would be best to stay away from crowed places for another 80 days.

Today were at the lake and she has an electrocardiogram and EKG appointment at UofM at noon. She also will get a booster shot containing the last of the vaccine that was made for her.

Keep the prayers and positive energy coming. Thanks for checking in. - Mike

Mike here, Lisa continues to do great. She's gained a couple pounds (41.5) and has an endless appetite these days. This is a picture of her helping me start up the sprinklers the other day. We all had a great Memorial Day weekend at the lake. Maranda even got up on water skis for the first time. Woohoo! Lisa had a routine CT scan yesterday but other than that things have been event-less and just about back to "normal" or as close as we can get these days. You can't tell from this picture but Lisa's hair is growing back. Thanks for checking in.

Happy 11th birthday to Tom

Tom turned 11 today and was very happy with his gifts, especially his new bike!

So Far So Good

Lisa went for check up with docs today. She did great with the blood draw. They got it in one poke and collected 12 tubes (thank goodness they only need a few drops in each!). Lisa got a little anxious before they stuck the needle in, but once that part was done, she was fine. I have to admit, I got a little woozy with her on my lap and a full view of the blood coming out. They assured me I wouldn't be the first parent to pass out...geez, thanks.

Doctors are pleased with her progress. They say we are not in the clear yet...but are very impressed how much of the disease is gone given what she came in with a year ago. Most kids still have active sites even after the treatments, so at this point Lisa is ahead of the game. Yeah.

There will be monthly check ups for the next year and scans every 3 mos. She is on maintenance drugs for the next year to help rebuild her immune. She is also starting Accutane which is an acne medicine, but in now being used to help fight neuroblastoma. Studies show that Accutane encourage immature neuroblastoma cells to stop dividing or to die.

They are still hoping there is a way to get her onto an anti-body study. It is a painful procedure and requires 3-6 different weekly stays at the hospital but has shown to be helpful in fighting NB.

So, things are going well and I try to stay in the present or very near future. Looking too far forward makes me uneasy because I know what our other neuroblastoma friends have gone thru and I know that approximately 40 percent of high-risk stage 4 patients relapse, usually within the first two to three years after diagnosis. Although some of these patients can be brought back to near remission, fewer than 20 percent of these patients are expected to survive for longer than five years. Those are tough numbers to swallow. But I continue to have hope and try to stay grounded in reality....none of us really know how much time we have left, so we can't spend our time wondering "what if" we need to spend our time living life at that moment.

HOPE

Mike, Lisa and Thomas were at Golden Pond with Grandma. Maranda, Chrissy and I were trying to figure out how we wanted to spend our girl time together tonight when the phone rang. It was the Pollard family inviting us to the ACS Relay for Life walk. It had totally slipped my mind and it was the perfect way to spend the evening.

We went up to the park and bought luminary bags for Lisa and my mom. We met up with the Pollards and enjoyed walking thru the park and listening to the music. The Luminary Lighting ceremony is my favorite part and while I enjoy staying for the whole thing, the girls were ready to leave and getting restless and cold.

We were standing in front of Lisa's luminary and I was offering up my last prayer as the ceremony continued over the loud speakers. Just as I opened my mouth to tell the girls we could go, they announced the next performers. The pianist was Thomas' counselor from two years of summer camp. We had just recently been trying to figure out a way to track him down. I looked at the girls told them who it was and that we needed to go say hello.

It was wonderful to catch up and felt a little bit like a divine nudge from above....it's been well over a year since we talked, yet there we all were at the same place, same time and with everything going on I was able to catch his name being announced over the loudspeakers. Life is mysterious, but life is good!

One more Picture... Lisa and I [dad] stopped in a dollar store and among the cookies and doughnuts she selected were these sun glasses.

A picture is worth a thousand words

Wow...we almost feel like life is back to normal...if there is such a thing. We had a lot going on last week and the pictures say it all.


Last weekend Maranda and I went on her class trip to Chicago. We enjoyed many sites including the Medieval Times dinner which served generous portions of food all to be eaten with your hands.











Thomas, Mike and I joined his teacher at the Turnaround Achievement award luncheon and teared up as he received his award.



Thomas, Christina, their cousin Rory and their friend Cassie all made their First Communion this weekend.


And Lisa...well, she just keeps going and going....she has a lot of energy and really is enjoying being outside...she asks to go for walks daily.



So, for now, all is well. Next week we will have follow-up appointments with her doctors and determine if there are any next steps. Right now, we're hoping for a carefree summer doing lots of fun things to make up for last year.

5:00 Shadow

We see hair!!! It's faint...but it's there. Lisa's eyelashes started showing up last week. This week she has tiny, tiny hairs on her head and parts of her eyebrows have reappeared. I keep wanting to scrub the smudges off the back of her head and have to remind myself it's hair. Yeah!

We're all doing well and staying healthy. This swine flu thing is a bit disconcerting, especially now that the kids' school closed. It just reiterates how precarious things can be....Lisa still has a suppressed immune system and any flu would be devastating to her system at this point. So, we are making sure everyone washes their hands thoroughly and keeps their hands away from their face. Other than that, we are enjoying the warm weather and making sure that Lisa is slathered in sun screen because her skin is more sensitive after her bone marrow transplant.

We continue to pray and think positive and make the most out of life.

Friday, 5/1

Quickie update: Antibody Therapy... out. Their isn't enough antibodies to go around it seems. That leaves just the Accutane Therapy and that's a little ways out. As of this moment we don't have any appointments, not even blood tests, for a couple weeks. Wow. What will we do?

Yesterday I took Lisa to UofM to collect stem cells. Collecting those from Lisa involves surgery to place a large temporary line in her leg, then on to the Apheresis Clinic where she's hooked up to the machine for about 3 hours. Her blood is drawn out of the line and the stem cells are automagicly separated and collected by the machine. After the collection, it's off to another clinic (all of this is within UofM) to remove the temporary line. 45 minutes later we were allowed to leave. All in all it was a 9 hour ordeal. Long day for sure but we were happy to be home at the end of the day.

So... we're about 70+ days post bone marrow transplant. We've another 30ish to go before Lisa can be around large crowds and whatnot. Except for that line infection a couple weeks back we've managed to keep her healthy. 30 more days and we're going to have to celebrate somehow.

Mike here again: Sorry for the lack of communication but it most likely means things are going well, as they seem to be. Lisa is now officially a skinny kid. She began a year ago weighing, I'm guessing here, 45 lbs. Today she weighed 37 lbs. and she's probably 4 or 5 inches taller. She's gone from one end of the chart to the other. Not to worry though because she has a lot of energy and her appetite is growing this past week. Chrissy 6 years older only weighs 52 lbs and Tom's kinda scrawny too now that I think about it. They must have the thin gene we all hear about. They really do have access to plenty of food. Really. And they say they like my cooking....

I took Lisa in for a few follow up appointments today. Six "pokes" altogether, three under the skin to test for certain reactions, two getting blood, and one during the CT scan. There were a few tears and after each she apologized to the nurses for saying she hated them. One nurse commented that Lisa made her earn her money today and without missing a beat Lisa said "Well that's your job". There's nothing dulling this girls wit to be sure. We sure missed having the central line in today to alleviate the need for all those pokes. We go back on Thursday and she'll have to get an IV placed to start things off. Thursday's procedure is aphereses to collect stem cells again. Once the IV is in she'll be sedated and another line, a big line, is placed in the artery in the leg. Once aphereses is complete the lines are removed. She might end the day with a new central line, a "port" this time just below the skin in the chest.

On the horizon is Accutane Therapy and Monoclonal Antibody Therapy. These are relatively new treatments added to the bag of tricks that can be thrown at this disease. It's hard not to get complacent when Lisa seems to be doing so well, but in truth stage 4 Neuroblastoma is a tough adversary and the plan is to throw everything we can at it.

Your prayers and positive energy continue to help. Thank you all for that.

Wednesday - 4/22

Today is/was Lisa's last day of radiation. Woohoo! Once again she's been a model patient. Granted the sessions are pretty quick, some only lasting a few minutes, but she lays back and doesn't move. She's a pretty cool kid. At home she's really starting to get back into her groove and it's great to see and hear. Her appetite could be a little better as she is down about 3 lbs. since radiation began but on Monday she ate more than I've seen her eat in a long time. She's hungry a lot but just can't seem to get much in that ity-bity stomach of hers.

Saturday 4/18

Mike here: Lisa arrived home yesterday as we hoped she would. She still looks great and although she is still on antibiotics the infection appears to have gone. Yeah! Her line was removed so we're free to go swimming for the first time in 10 months.

Thusday 4/16 Update

Mike here: As of this writing Lisa will be released sometime on Friday after her line is removed. The "line" that Lisa has is a Broviac catheter. It's a long, hollow tube made of silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted through the chest and into the large vein leading directly into the heart. This line is used to administer medicines, IV, or draw blood and such and almost eliminates the need for "pokes".

The line is being removed because the consensus is that that is where the infection is. She's had this line, her second, for probably around 6 months so we feel we've done pretty good with it. Next week she'll have a different type of line placed below the skin in the chest. It's called a port and while it will require less maintenance, it will require a needle to access it. Since the port is just below the skin it should be much better than trying to access a vein every time.

So... good news once again. All those prayers and positive are really doing the trick. Lisa seems to be doing great and remains unfazed by all this. Since we're on Spring break this week, Maranda, Thomas, and Christina are here today and are pictured here playing Wii.

Nooooooooooooooooooooooooo!

Crap....6:45am call from doc...that's not good. Lisa cultures came back with bacteria. We have to take her to ER and have her admitted. I feel sick. Let's hope we've caught whatever it is quickly enough and that they can get things under control....she's still in her 100 day window after transplant, so even little things can blow up into something huge.

Let's hope for the best....and PRAY!

So Far So Good

Well, so far so good. The fever passed and Lisa labs looked good today, so we're still outpatient. Yeah. Her radiation treatment and vaccine shot have taken a lot out of her today and she spent most of it sleeping. She is definitely a bit more nauseous....hopefully we can all get a full nights sleep tonight and get back on our game.

I finally figured out how to add an email subscription to the blog. For those of you who would rather have updates mailed to you vs having to remember to check the blog, you can submit your email in the box on the right. When we make any updates, they will be automatically emailed to you within 24 hours.

3:40 AM....freaking out

Just before 3 am, Lisa woke us up saying she didn't feel well. I touched her head and told Mike she felt warm, he touched her head, grunted and rolled over. She ran into the bathroom to get sick and then ran out again saying she was fine. I took her to the living room to sit on the couch and hunted around for a thermometer, questioning whether it was stupidity or cockiness that allowed us to leave Lisa's paperwork, "as needed" med basket and good thermometer at the other house. I finally found the slowest working thermometer in the world and promptly put it under Lisa's arm.

102...sh!t ...that's not good, maybe I had in the wrong spot under her arm. I stuck it under Lisa's arm again and waited for a good minute as the crazy thing beeped every 4 seconds to indicate it was working....finally triple beeps and the number is....102. SH!T!!! Okay, maybe it's broken...I take my own temperature. Slow beeps, another minute goes by...finally...97.8...arghhhhhh! I go shake Mike awake..."You need to get up, are we supposed to call doctor at 100.5 still or at 101? Lisa's temp is 102...she could have an infection, should I call the doctor" Mike rolls over and mid snore says "Just wait a little bit, it will go down, she's worked up". Yah..right...."Hold this under your arm"I say and stick the thermometer under Mike....the clock ticks...and Mike's temperature reading is 98.1. .. crap. Mike mumbles"Lisa always runs higher when she's tired" Uh....not 102 high. I go get Lisa and dump her in bed with Mike..."feel how warm she is". He tells me to go get her a cool washcloth. When I return, Lisa says she has to go to the bathroom. I help her up and she goes to the bathroom and as she's washing her hands starts to throw up. I call for Mike for a little help. Once we get her cleaned up Mike takes over the temperature reading....her temp comes down a little bit with water and cool cloths. Of course the only tylenol I have in the house expired in 2005...that's ok, I'm too nervous to give it to her anyway because I don't want to mask her temperature. I ask Mike to take her temp again..it's dropped a bit...100.7....good enough for him. They both roll over and go to sleep, I pull out the computer and blog.

This is freaking me out....one part of me wants to run and call the doctor because her temp spiked. The other part of me has no desire to drag her into the ER and sit around for 3 hours in the middle of the night to get her admitted (which is standard protocol for cancer kids with a fever). One part of me is saying I'm just being a worry wart, the other part of me knows how important it is to get antibiotics running if this is an infection. One part of me really believes it's just a side effect from the radiation, and the other part of me knows I should be down on my knees begging God to please not let this be an infection.

So at 4:06 in the morning and now a temperature of 99, I hope that all the prayers for Lisa are still flooding the heavens and that we don't have to become visitors to Motts 7th floor any time soon. Guess I should try and get some sleep, Lisa and Mike seem to have things under control.