Tuesday, December 29, 2009

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?

Friday, December 25, 2009

Monday, December 21, 2009

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!

Tuesday, December 15, 2009

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!

Sunday, December 13, 2009

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!

Thursday, December 10, 2009

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!

Monday, December 7, 2009

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?!

Saturday, December 5, 2009

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!