Thursday, August 28, 2008

Moving Right Along

Sorry we didn't update you all sooner. Lisa was fine on Tuesday. Surprisingly, despite having a nose bleed in the morning, all of her blood counts were A-OK. That meant a Motts Free Day and is a positive sign that chemo may start next week as scheduled.

We are gearing up for the start of school. Last night, we went to Thomas and Christina's Meet the Teacher. Lisa and Maranda handed out Lisa Bracelets (we had a new shipment of larges come in...if you don't have one, let us know).

I think it was the first time many of you have had a chance to see her since this all started. I hope seeing her lifted your spirits. It's much easier to believe miracles can happen when you see her bouncing around and know what she is fighting. It was a wonderful feeling going to school and feeling so surrounded by love. The school and all you readers are our village, and as you know, it takes a village to raise a child. Whether that child be Maranda, Thomas, Christina, Lisa or any other child, without all of you...our neighbors, friends, family, co-workers, blog readers...helping, thinking and praying for us, we would not be able to stay strong and face each day.

So once again...thank you, thank you thank you!!!!!!! Keep praying and keep living every day to the fullest!

Wednesday, August 27, 2008

Wednesday 8/27

Mike here - So the transfusion went well enough the other day, what day was it - ah, Tuesday? Monday? I took Lisa in at about 7PM but we didn't get home until 4:30 AM. Ouch. She didn't miss any sleep but I paid the price. The rest of the day yesterday went fine. Our little miss sunshine is her ol' self and as spunky as ever. Today she's fine too, but she woke her sister Maranda up today because her nose was bleeding. Linda's probably on her way to the clinic as I type this.
The chemo drugs, as you may recall, halt the growth of our fast growing cells. Since cancer cells are among the fastest growing cells they are effectively targeted. The down side is that we've lots of other fast growing cells such as skin cells. Since skin cell production is greatly reduced, cancer patients often have rashes and sore spots and nose bleeds and the like. That's bad enough but combine that with low platelets like Lisa had the other day and you've got a problem.
The nose bleed seemed to stop with the help of a cold pak and they're on their way to the clinic so there's no cause for alarm but that's where we're at today folks. Thanks for checking in and for your continued support and prayers.

Monday, August 25, 2008

oops...spoke too soon

Lisa's blood counts came back real low this afternoon...so Mike took her to Motts for blood and platelet transfusion. They left after dinner. If my memory serves me correctly it takes about 6-8 hours to complete...so, I don't think they'll be admitted, but they will be at Motts for the evening and should be able to get in a few showings of Beauty and the Beast

We're still here

Sorry to be so lengthy in posts. I guess this is a case where no news is good news. Lisa finally stopped throwing up consistently last Thursday. We still have a few moment here and there, but for the most part she is doing fine and eating like a horse (yeah!)

We were able to sneak away for the weekend and let Grandma Mac pamper us at Golden Pond. It was wonderful and much needed. I cringe at the thought that school starts next week (probably more than the kids do) and I dread the thought that summer is over.

Life just seems to be moving far too quickly and the pace generally picks up with the fall.

So, I'm going to take a few deep breaths and make every attempt to enjoy this last bit of summer before school and round 4 of chemo starts.

Hope you all find time to do the same!

Monday, August 18, 2008

Lisa has her own song

Do you have your volume turned on? If you do, you'll hear a song that was written just for Lisa.

There is a non-profit organization called
Songs of Love that writes personalized songs for children facing medical, physical or emotional challenges free of charge. Motts put us in touch with them and we filled out a form that described Lisa. They took the information and created a song just for her. We got the cd in the mail today and it's been playing ever since...again and again and again.

To download the song or a ringtone, you can click
here and enter in McMaster in the Child's Last Name field and 16152 in the child's record number field. They are asking for a small donation to download which will go towards supporting their mission.

Happy listening...Lisa loves her song!

PS...as of 3:00 this afternoon we have been puke free. She came marching into the kitchen and demanded a waffle. Yahoo!! Dinner was lots of buttered noodles. Mike is on wake-up call tonight, so if she does the 3:00 am thing again...he has to clean it up. Sweet dreams for me...I hope!

Saturday, August 16, 2008

Ick, Ick, Ick

Well, well, well...while Mike was having a happy Friday morning....Lisa and I were groggy and doing the bucket dance....poor kid....ick!

The first bout at 3 AM we both handled like champs (for those of you that don't know, I've always been puke-phobic...Chrissy's arrival in our home apparently was training for this part of my life because I'm proud to stay I stood there and held the bucket while Lisa did her thing and didn't run screaming from the building...that is a huggggggeeeeee accomplishment for me!)

Anyway, the 3 AM thing I thought might be a fluke...given Lisa didn't eat much Thursday night except for 2 bowls of ice cream the U/M sports players delivered as they visited kids. (Go figure, a sick kid who likes ice cream). I have this theory about dairy and queasy stomachs and how they don't work well together and my theory was proven positive at 3 am and confirmed when the nurse walked into the room and covered his face and said "What did she eat?!

We were able to finish the rest of night puke-free, but not with sound sleep. Because of the meds, they wake Lisa every hour to change her pull-up otherwise she will soak thru everything and will get a rash. They also need to make sure she is passing these highly toxic drugs.

At 9AM, the nurse practitioner woke me up with a sunny smile and the words "I've signed the discharge papers, you can home when ever you are ready". Hot damn! I had myself mentally prepared to be there until 7:00pm...awesome, let's get out of here. Start packing up, Lisa sits up, says she's going to be sick and she is. Crap. Ok....clean her up, get her situated. She's fine until she sits up again...What the fu@!? ...ring nurse...ask for drugs...pack faster. It's closing in on 10:00. Find a volunteer to watch Lisa so I can take stuff to the car. Lisa sees me leaving and tries to follow, she stands up, wobbles and starts to fall. Whoa! What the heck? Has she been drinking? Nope, it's the drugs...man she's out of it. Ok, maybe she'll sleep. Tell the volunteer just sit with her don't let her get up. Make three trips to the car. 11:00--Grab a wheel chair, we're ready to go. Take one look at Lisa...hmmm, she doesn't look so go. Call the nurse, have her double-check her temperature. Nope it's fine. Okay, cause I'm not coming back. Man, does she look like crap...I grab a towel, cup of ice, cup of water and a bucket . I force Lisa to lie down in the wheel-chair because she looks likes she's going to just tumble right out of it. 11:30- Off we go.

Get to the parking lot, get her in her new car seat (Thanks Andrea!)...crap...catch some puke. Ok....now I'm standing in a parking lot with a bucket of puke and a bottle of water...yah...well.... ya might want to make sure you don't walk thru any wetspots in an enclosed parking structure. Onwards we go. I'm thinking about how surreal it is that I'm leaving the hospital with a kid who looks/feels much sicker than the kid I brought in. We get 3 blocks from the house and Lisa shoots and scores again. I call Lisa, the zookeeper, and tell her to meet me in the driveway with water, washcloth and towels. Get home, clean Lisa up and send her in the house. Have a few chats with neighbors and friends going by. Really don't want to go in that house....did I tell you I was puke-phobic. Anyway...finally return to house and reality returns.

We continue with this reality as we proceed thru today...Saturday, 6PM. Lisa is still laying down which everyone in the house is now encouraging because every time she's sits up...well, ya get it by now. She is on meds every 6-8 hours, religiously (like I would allow anti-nausea med to be missed!) and because she hasn't even been able to keep water down, at noon we started giving her a teaspoon of liquid every 15 minutes to help keep her hydrated. So far, it's worked.

Thank God for Mary and Alan who have graciously agreed to watch the kids tonight. Mike and I are going to the Fifth Avenue Ballroom, a bar, where our favorite 80s band is playing tonight. I plan on dancing off any and all thought processes...I'm sure Mike will be ridding himself of thought as well, but I think he'll be using drinking, not dancing, to do it!

Ugh...2 more weeks until Chemo number 4!

Friday, August 15, 2008

Friday 8/15

Mike Here--Good morning everybody. At least it's morning where I''m at while I'm typing this. It's also Friday, sunny, warm, with a beautiful weekend ahead and Lisa is getting discharged this morning. So that all sounds pretty darn good to me.

All things considered, Lisa did very well this past week. This round of chemo was said to be the "worst" as far as the side effects from the type of drugs used. Her appetite was next to nill the past two days and she did throw-up a time or two, but even one of the doctors said that's pretty good if that's all the trouble she's having.

Lisa's a trooper of a puker. She gets it up and out without all the fuss and wailing that some other family members might put you through, [names withheld] then she'll tell you she's hungry. Granted when the food came she turned green and couldn't stand the sight of it but she kept her composure and elected to just have the tray of food removed.

She's still in great spirits, albeit tired the past few days but that's probably due to the lack of eating.

So like I said, the weekend looks great and we intent to get out to enjoy it. I hope you all get a chance to do the same. I'll post a few photos of our Little Miss over the weekend so check back in...

Wednesday, August 13, 2008

2 down, 2 to go

Two days down, two to go. Lisa is handling this chemo treatment very well...thank goodness!! Today she doesn't have much of an appetite, but she's still drinking so that's good. We're in the playroom and she's keeping busy and seems happy and content.

Because of the late start on Monday, she gets her chemo drugs in the evening. That means during the day it's all hydration, which mean we do the dash for the bathroom about every 20 minutes and she pees like a champ. Boy if there was an Olympic event for peeing...she'd take the gold!

The Maranda situation is not looking promising, she has a 30% curve. Our doc is looking to hook us up with a specialist. Typically they brace for anything 30 or above. I have to say this just totally bums me out. I know she'll be fine, I know we'll do what we need to do, I know we are all strong...but really.....how unfair. It's hard enough to be going into 6th grade and be on the verge of puberty and popularity...let alone dealing with a sister, who now that she is your "forever" sister may be called home to God because of cancer. Let's just throw scoliosis on top of all it. I'm sure we all remember what it's like to be a pre-teen starting junior high....those are some pretty geeky times...a brace is not going to make you feel like the belle of the ball. I'm still holding my breath and BEGGING God to not let her need a brace or surgery. I know that compared to a life threatening disease, scoliosis is a piece of cake, but I'd rather pass on that dessert for now.

Monday, August 11, 2008

Patience is not MY virture

Ok...once again, I've been reminded that patience isn't my strong suit. Today seemed to drag foreeevvvvverrrr. Unlike Mike, I did not feel rested and ready to get on with things. I felt edgy and anxious and just wanted to get this over.

Lisa and I were accompanied by Maranda when we started our day at 10:00 at Motts. We went to clinic for bloodwork. Then we had to wait until 11:00 to see doc. After a bit of a wait, he came in and let us know that Lisa's counts looked good, we were just waiting on her ANC number to know if chemo was a go. Around 12:00, he came in to let us know the numbers were good and he just needed to get bed and have us talk with head doc. I told him bed already was secured...he said great...he'd be back. At 1ish he finally reappeared with other doc...we chatted and they said as soon as bed was ready we would be on our way. Hunh? Thought we had it...more waiting. About 1:45, he told us we could go wait in playroom...well that was a relief seeing as Maranda and Lisa had just about run out of things to do in the exam room..(including dropping food crumbs all over the floor and dumping water on the computer) We went to the playroom, Maranda and Lisa started an art project and 5 minutes later the doc was back saying we were all set. Well, why rush now....I just let them finish their project. So about 4 hours later at about 2:00, we finally checked into Motts.

Feeling frustrated, I was not happy to see we were in a double room (even though they'd moved out the second bed with the hopes of a slow week and letting us have the room to ourselves). Maranda and Lisa went off to play and I vented to the nurse....not that there was anything they could do....I was just in a mood. It didn't help that a fellow chemo kid we know had their clinic appt 2 hours after us and checked into Motts after us but ended up in a single room. I guess I just haven't figured out who to bribe yet. Anyway, we will make the best of this and all will be fine. With the second bed out of the room we were able to have a family dinner (tacos from the Enright family---yumm!) right in the room and watch Beauty and the Beast. The kids were thrilled, dinner and a show!

Oh, did I mention they didn't even start Lisa on any hydration or drugs until 6:00? What's up with that? Annnnndddd....thankfully I was on the ball when they did finally start the chemo drugs and asked if they'd given Lisa her anti-nausea meds....oops..they forgot!!! That could've been messy. They stopped the chemo and ran the anti-nausea.....hopefully she'll do fine tonight. It's new drugs and the doc said they are the "pukey" ones....shhhhh...no one tell Lisa!

Need another prayer....this time for Maranda. We just found out Friday at her 6th grade physical that she has scoliosis. Now normally that type of news would be very unsettling for me, and while it's upsetting, I can at least console myself with the fact that it's not life threatening.

Apparently scoliosis runs in the McMaster family and most have been mild cases that just needed to be monitored. Let's hope that holds true for Maranda; we're waiting for the x-rays to come back. Once she adjusted to the shock of the news, she took it like a trooper. We researched and talked about it and she decided that if ..."If I have to wear a brace, I hope it's the Boston one, that doesn't look too bad and I can hide it under my clothes. However, I'd rather wear the big ugly Milwaukee brace than have surgery". Wow...what a great kid. Heck, I read the book Deenie when I was her age and was traumatized just by the thought of possibly getting scoliosis! It breaks my heart to think of of her having to wear a brace...I know we'll do what we have to do, but really! She's already facing a big year with entering junior high and puberty on the horizon...it just doesn't seem fair that she have to deal with this. Please God, cut us some slack!!

Ok..that's it's for now.

Good Monday morning everyone! Mike here at the blog desk. After our week off we're all refreshed and ready to get on with this... (ok I am at least) Linda's at home right now I imagine whiping the kids into gear so that she can be at Mott's at 10 AM. Linda will most likely give a full account of the day later this evening so check back tonight or tomorrow morning. Today Lisa starts a new round of treatment with a new cocktail of chemo drugs. Say a few prayers that she handles them as well as the last two rounds please.

Wednesday, August 6, 2008

Hurry Up and Wait



This is Mike writing......With this week "off" because Lisa's platelets are low you'd think we'd be kicking back and relaxing a bit, but in fact the delay has me on edge. I think I loath the waiting more than anything. At least when Lisa is in for treatment I'm doing something, I'm actively fighting this thing. Grr. Our little princess seems to tire easily the past few days. She'll be running around like a nut (if nuts could run that is) and the next minute she'll realize she's tired and want to lie down, only to get up a few minutes later to tickle someone.

I thought I'd share a couple photos of Lisa from this past week. One was in "Lisa's Boat" at the lake. With her fondness of boats I think she's either going to work on a cruise ship or be a tug boat captain when she grows up! We need to thank our neighbors Scott and Terri McMillian for letting us borrow their home at the lake on Saturday. We all had a great time relaxing by the water and the kids had a great ride on the new tube.

The next picture is of course Princess Lisa about to munch on a cookie, complements of Frank and Mary Grozenski (sp?) Mmm, cookie...

Monday, August 4, 2008

And...we're back out of Motts

Ok...someone up there has a funny sense of humor. We finally get into a private room, I'm able to get a cot, I get all the furniture moved around and unpack for the week, all systems go. Around 2:00 today, I found out all systems are not go, but Lisa is...figures...we get a good room and only have to spend one night in it.

Blood draw today revealed that her platelets were low...low platelets, no chemo. So we get to pack everything back up and head home for another week...ARRRGHHH!

On a good note, they did get her broviach back in this morning. This required anesthesia which, now that I'm starting to get the hang of things, went quite well. There were no pokes and no extra meds, just a "big ole elephant mask" for her to put on and off she went. (Does anyone else out there feel a bit of panic when their kid is "put under"? It makes me feel very uneasy to watch her go from crying and fussing to slurring and stillness and then blankess and sleep...thank God the monitors are still beeping to indicate life.) Her return from sleepy land is always a pain. She is just angry and grummmppppy and generally starts saying "shut-up" and "I hate you" to anyone who tries to touch her.

She continued to fuss and yell at me for a good 1/2 hour once we returned to our room. She stopped long enough to shovel in pancakes, sausage and pears. She started fussing again until Maranda, Ms. Lisa, Ms. Anne and Lauren showed up. She was happy to see them and started alternating between happy and grumpy. They all hung out to help us pack up and Lisa was playing pretty well by the time we left. One last check of her bandages got her howling again, but Mom was ready to bust out of the joint. So with 4 helpers and one whiny child we left.

But we will return...apparently next Monday if her blood counts are good.

Sunday, August 3, 2008

We're checked back in

We're back and getting ready for chemo. Checked in around 8:30 tonight. Got the isolation room...it's small, but it's private. I'm sure there are some bigger private rooms on the floor, but it seems like we have to put our time in to get them...each stay seems a step up.

The plan was that they would put an IV in tonight and draw some blood and get Lisa on some precautionary antibiotics. Nurse and doctor were both warned that Lisa was not an easy "poke" and I let them both know that I had made a promise to Lisa when she got her broviach that anyone who tries to poke her will get a punch in the nose from me. I told them I understand that she needs to get a "pic" line for tomorrow, but they need to sedate her somehow to do it. They can give her gas, a pill, knock her over the head with a brick...but she's not to know she's getting poked. They listened an ordered some Lorazepam that would help mellow her out. Considering she was sleeping we figured we were good. The tech came in and Lisa started wailing....so much for being mellow. The tech looked up and down both arms and after careful scrutiny determined she couldn't find a vein that she'd be able to poke....so that was that.

It's 11:40 pm now and Lisa is wide awake....apparently we need to get her stronger meds!! The plan is if the next shift gets here and has a tech who thinks they can get the line in, they'll give it a try. Otherwise they will wait until morning when she goes to the O.R. for her new broviach. Makes sense to me...they can sedate her and then poke her. I think the concern is she needs some lab work done first. The doctor doing rounds said he gave orders not to do anything after 12:00 tonight...so we will see.

I've had a few requests to set up a visit schedule so I will do that again. Because we are going to be here round the clock, I will just put Morning and Afternoon on the schedule and if you want to visit, you can just fill in the day and time that is convenient for you. There aren't many restrictions here...just that you be healthy (kids are welcome).

This round of chemo is going to be different drugs...so say an extra prayer that Lisa handles this one as well as she did the first two rounds.

Good night all.

Some new pics


The Yesh Girls---
Short on hair,
Big on love.
All hair donated to "Children with Hairloss"







We had a great time celebrating my brother Mark's 50th birthday on Sunday.
The kids--including Lisa---got to swim.

Friday, August 1, 2008

Saturday 8/1


Mike here... Just a quick note to update everyone. I took Lisa to Mott's today so that Linda could spend a little quality time at the water park with the other kids. At Mott's they agreed that the line (Broviach) needed to be replaced after viewing the x-rays and seeing for themselves just how far out it had been displaced. (About 6cm) So the nurse removed the line and bandaged Lisa up for the weekend. We're not allowed to get the bandage wet for 24 hours but after that, no restrictions. Woohoo! Linda will take her in on Sunday evening where they'll prep her so that she can get a new line in place first thing Monday morning and start her chemo on time. Thanks everyone! Have a great weekend...