Thursday, July 31, 2008 whole day without going to Motts

Well...Lisa was released yesterday!! Between the nupigen shots and the catheter they collected the jackpot of stem cells. They needed 500 and they got close to 2000...enough for almost 4 transfusions the tech said. There was talk about a possible second collection after the next round of chemo, but they got so much from this collection, it sounds like we won't need to do the next collection. Wohoo...I'll be sure to ask the doctor to verify.

We thought we were going to have 4 straight days of home time before going back to Motts for 5 days inpatient chemo. Unfortunately, some time today Lisa pulled her broviach loose....gross! I got home around 7:30 tonight from work and Mike gave me the news that once again I pulled short straw and get to take her in tomorrow to see what needs to be done. Thankfully Mike's Mom, Mary Jo, is still in town and has volunteered to come to the hospital if this is going to be an all day affair so I can take the other kids on an outing...we are in some serious need of some fun!

So, keep your fingers crossed that it's just a matter of a little jiggle and a stitch or two and not a whole new replacement or something that requires overnight!

Wednesday, July 30, 2008

Good Morning

Hey....we got the suite! There's a big room and the end of the hall that we always walk by and you get that room? Well, apparently it's just luck of the draw. It's huge...2 patients in it like all the other rooms, but there's room for 2 more beds and you can actually walk around without bumping into things. Of course the irony of the situation is that neither Lisa or the other little girl in the room can get up and move around (Lisa because of the catheter in her leg) so really, what's the point of all this space? I've tried to place a "reservation" for next week when we're here for chemo for 3 days and, of course, all the nurses just smile and nod and look at me like I'm looped. (Which I'm not, but could be if I go to the refrig and get my special little drink that Mark and Malinda brought me last night....yummmm...)

Lisa woke up bright and early and has already finished watching Beauty and the Beast. We're waiting on pancakes and sausage and than at 8:00 we're off to the stem cell collection (apheresis). Her blood counts are good and they are hopeful that with the new catheter the collection will go quickly and we'll be out of here this afternoon.

Tuesday, July 29, 2008

Another stay at Motts

Hanging out at Mott's 8th floor family center.

It's great to be three.

Hate to say I told you so, but I did. Lisa spent most of the day yesterday at Motts getting her testing completed. Everything went well and the bone scan, bone marrow biopsy and stent removal are complete. She was a bit groggy on the way home but perked up after dinner and continued to eat non-stop until bedtime.

This morning Mike took her back in to begin the stem cell collection. They got there and attempted to get things started, but they just can't get the blood flowing smoothly enough from her broviach....soooooo....that means they have to put a catheter in her leg to do the collection....that means she will be getting sedated this afternoon to get the catheter put in....that means they will be keeping a close eye on her....that means we spend the night....told you. Ugh!! And of course, I pull short stick...Tuesdays are my nights to spend at hospital..UGHHHHHHH.

Monday, July 28, 2008

What the's only hair

So after much thought and some opinion polling....I did it. I cut all my hair off. The goal was to shave it down to nothing, but the small group of supporters that surrounded me on this journey said it was short enough.

"Why?" many people want to know. My response "Why not?". I could not think of a good enough reason not to do it, but the reasons to do it were numerous.

Probably the biggest reason to do it was fear. As I found myself thinking about shaving it, I found myself saying "I can't do that, what would people think? What if I look awful?" That reasoning didn't work for me. There is a saying "there is nothing to fear but fear itself" and I needed to face my fear and not let it drain me.

Many people look at this as a control thing for me; perhaps, but honestly knowing I was "afraid" to cut my hair just seemed so ludicrous. It's hair for God's sake, it will grow back! Is my esteem and my courage really tied to my hair? I think not, but just to be sure, I cut it. You know what...I'm still waking up everyday believing I can deal with what's on my plate (esteem) and well, I'm still waking up every day and actually dealing with what's on my plate (courage). I feel a bit stronger to knowing I did something that was "scary" to me. Not to mention, I've got 20 more minutes added to my life every day because I don't have to do my hair. I can save LOTS of money on shampoo, conditioner, dye, gel, hair spray, hair putty, clips and all the other hair stuff. There's lots more room in my bathroom drawer. I don't get hat hair. I can claim to look a little bit like least we have similar hair styles. Oh and did I mention some of the hair clippings were long enough to donate to Children With Hairloss so that hairpieces can be made for children who can't grow their hair back to do chemo or illness. So all in all it was a good move, I just wanted you all to be prepared the next time you see me!

Patty Foster had the honors of putting in the ponytails and supervising Maranda, Thomas and their friend Sarah as they cut the hair (this actually helped Maranda be more accepting of the whole idea...she was really struggling with understanding the why/why not logic of my doing this). Mary Mc was in charge of making sure pictures were taken and I didn't chicken out.

Sunday 7/27

Here's Lisa on her way to Mott's for a blood draw on Sunday morning with bunny "Ronnie", that Great Aunt Veronica sent.

The weekend

Lisa returned home Sat afternoon. She seems to be doing fine a little tired and grouchy today, but so was I. She had to go in for blood test today so they could have her counts for tomorrow. Most likely they will be doing the bone scan, bone marrow biopsy and stint removal tomorrow which means makes me very uneasy when they put her under especially given all the other stuff her little body is put through. I know they know what they are doing, it's just stressful. She is supposed to be having her bone marrow collected this week. Let's hope we can get her blood counts high enough to start that, otherwise it will bump out her chemo schedule which given the aggressiveness of her cancer is not what we want. So far the tests have shown no change...that's good in the sense that they've halted the growth of the cancerous cells, but after 2 chemos (which apparently is relatively early) there has not been much shrinkage either.

More updates to come.

Friday, July 25, 2008

Learn something new every day

Well....Lisa is not coming home today....and you certainly can't blame it on my efforts. I tried and tried, but the doctors just kept on with protocol. The one doctor even teased me about being a "helicopter parent" you know those types that hover. Really, as if, that would be me...oh...yeah that is me.. but come on now, isn't that what a parent is supposed to do? I mean I'm only looking out for my kid. I told the doc this and he smiled and said most likely she'll be coming home Saturday. Rats!

So, what we learned is that whenever Lisa's temp goes up to 100.5 post chemo, she will be admitted to the hospital. Honestly, this shocked me-- 100.5--- that's nothing to a parent, that's a take some Motrin, keep an eye on her and call the doc in the morning if it gets worse thing. Even after being at Motts for 2 days, I was a bit skeptical and kept asking docs and nurses if we'd done the right thing bringing her in. I mean 100.5...come on now, it's just an itty bitty temp. I thought the staff would pacify me with the "you did the right thing, better to be safe than sorry" routine reserved for hypochondriac hovering moms like me. Pacify....they looked shocked that I actually questioned bringing her in...they all were pretty serious as they repeated..."You have to bring her in, you just never know and we need to treat with antibiotics to make sure that any infection she might encounter is kept to a minimum." They were all pretty serious about the whole thing.

Apparently, chemo kids with 100.5 temp is nothing to mess around with. Because their white blood cells are so low (which are what trigger temps as they rev up to fight infection) kids on chemo might never get a higher temp to signal a problem...100.5 is high for them. So even though Lisa had no other symptoms, protocol says we bring her in and she stays for 48 hours on antibiotics while they watch for infection. She has to have high enough blood counts and be fever free and infection free before they send her home.

She's been fever free since we checked her in on Wed and her labs so far have been good. So...hopefully Lisa will be coming home Sat.

She'll return to Motts on Monday to get her bone scan and bone marrow biopsy done, as well as, they will remove her stint in the hopes of removing the cause of the UTI we can't seem to get rid of.

Next week, she will also be starting stem cell/bone marrow collection, which while I thought this would be easy, have now learned that she has to have high enough blood counts before they can start the collection. Once the counts are high enough, it takes 5 hours at a time to collect, patient has to be bedridden during the procedure and it normally takes 3-5 days to collect enough. This is all a big magical mixture of timing, one that is pretty important, because they can't do the next round of chemo (scheduled for the following week) unless they are able to collect enough stem cells. Oh, and did I mention that they plan to try and do this all outpatient! While that's good because we get to sleep at home every night and have the family all together. It's a bit tougher on Lisa because it exposes her to a lot more germs in the clinic and we have to get up early every day to make the trek to the hospital. keep's going to be a hectic week.

Thursday, July 24, 2008

Still hanging out--updated

10:30 a.m. Thursday---Mike and Lisa still hanging out at Motts. Her fever is down. She's been getting antibiotics just to be safe and had a blood transfusion because of low hemoglobin.
1:00 p.m. Thursday---guess we'll be hanging out at Motts for at least another night. Docs are going to try and get some of the tests run that are scheduled next week. It would be nice if they could get them all done so she can have a week off. So far she's doing good and feeling fine.

Wednesday, July 23, 2008

Lisa temp up, had to stay at Motts Wed Night

Well, after a day of tests and being at the hospital most of the day, Lisa went back with Mike tonight. As I was putting her to bed around 9:45, I noticed her head was hot. I took her temp 100.5. Not bad by most kids standards and usually just treated with Tylenol or Motrin. I checked our paperwork which did instruct that we call at 100.5, so I did figuring they would tell us to dose her and keep an eye on her. About 10 minutes later, when I was in the shower, the doc called back and talked to Mike. "We have to take her in to the hospital" Mike said as he entered the bathroom. "Very funny" I chuckled...we all know those McMasters..what a hoot! "Did they say to give her Motrin?". "Nooooo" Mike repeated "We have to take her in; you want to take her, you're the one who called." Hunh! He wasn't joking. I hurried through my shower as he got Lisa ready. Feeling a bit guilty, I asked him if I should have waited on calling to see if her temp went down once she fell asleep. He looked at me and said "No, I just checked it, she's now at 101." So, off they went. She seemed okay...a bit pale and not too fond of getting out of bed to go back to Motts...who can blame her? It's 11:45pm now and they've been admitted...standard procedure. They will run blood work and keep an eye out for infection. Hopefully they'll be home tomorrow so they can go flying and see Grandma for the day!

One other thing...although our doctor has not discussed the results from today's MIBG, they cancelled the scan for tomorrow...this does not seem promising. Last time Lisa did this test, they did not have her complete the second day of testing because day one showed the cancer in so many areas they didn't need to test her again. Let's hope that there has been some improvement and they just were able to get all the data they needed from the first scan.

Have a good night all.

A very, very, long, long post

Today we got to the hospital at 8:30. Lisa went into a total meltdown when the tech came in. She didn’t want to be here, she wanted to go home and she didn’t want any pokes. I tried to answer the techs repetitive, inane questions calmly, but as Lisa’s screaming and kicking escalated, I found myself short on patience and started giving the tech very short, snippy answers. The conversation went something like this:

Tech: “Has Lisa had any surgeries before?”
Me: “Yes, eye surgery and the same procedures she’s having today if you consider those surgeries, she had anesthesia”
Tech: “How long ago was the eye surgery?”
Me: “What?” struggle with Lisa “uh 2-3 years ago, it was here, should be in her records”
Tech: “Does she have any metal implants in?”
Me: “No, I don’t think so”
Tech: “Besides her stint, does she have any meta implants?”
Me: “I thought her stint was plastic, no I don’t think there is any metal”
Tech: “When were her last tests?”
Me: to myself --- are you fricking kidding me?
to the tech--- “I can’t really recall the dates right now, everything has been done here and is in the charts”
Tech “ok, so what test is she here for today”
Me: march over to my bag…pull out my paperwork…show here the paper and say “these, the ones that are printed on the paper”. Bye-bye tech.

After that we were sent to the waiting room. Lisa was screaming the whole way there. A nurse offered her stickers and she barked no. She carried on for about 10 minutes then saw Mickey Mouse on the TV and returned to normal. She went up and told the nurse she was ready for her stickers and then proceeded to do crafts…lots of them. When the nurse went to check her vitals, Lisa led her through the routine, telling where to check her ears, how to weigh her, how to do blood pressure. Her MIBG was scheduled for 9:30 and we watched the clock tick by. Anesthesia finally came down at about 10:30. Nicest people. They explained that because the one procedure room was behind they were flopping Lisa’s test and having her do her MRI first and then the MIBG so she wouldn’t have to be under so long. Excellent. After Lisa’s experience yesterday, I made it very clear there would be no pokes to her while she was awake. I told them I didn’t care what they had to do once she is in sleepy land, but under no terms were they to poke her and she know about it. They agreed and we discussed the option of a gas mask and then after my repeated comments that she is hard to “stick” they determined that in this case it would be best to use her broviach. Yeah!!! We got Lisa on the bed, I told her they were going to clean her tubes. She lifted her shirt and helped them…they connected the anesthesia and off she went, sleeping by 11:00.

I went to the cafeteria and had a nice chat with my friend Marcia who was here for an appointment. Now it is 12:30 and I have at least 3 hours to go.

Now…this post is going to get reallllllly long. Sorry, but I’ve not been able to write as frequently because of work, and I’m trying to catch you all up. Again, I’m very appreciative of all of those who read this blog frequently. Knowing you’re out there thinking and praying gives me a boost. A special thanks to Ashley whose leaves us comments every time we blog….it let’s me know people are reading and there is a life outside cancer. Thank you to Lisa G. for suggesting Mike and I use different colors when we blog so you can tell us apart. I was told this weekend that sometimes the blog actually causes some of you non-criers to “squirt a tear”; while that is not my intent, I’m glad you are still reading and the expression “squirt a tear” just makes me laugh. I’ve never quite heard it said like that before…so keep reading, keep laughing and keep squirting tears if you need to! Thank you to all the friends, family and Chrissy’s girl scout troop who are giving us all types of support and making sure we don’t go hungry! We are well fed, the kitchen will soon be stocked on a regular basis and the kids are getting to activities as needed. This is becoming a bit easier to deal with, but I know in my heart it is only because of all of you who are sending your prayers, kindness and energy to us.

I’d like to close this posting with two stories.

Time Is Finite, Don’t Take It For Granted
Monday night, a close family friend--a 15 yr old young man-- gave his family and friends a fright. He was hanging out with his hockey team having dinner at the coach’s house. Life is good. Suddenly, he is choking on a piece of steak. The choking continues, he is gasping for air. The coach’s wife performs the Heimlich…while this moves the steak and gives him a little more air, it doesn’t dislodge and his breathing is compromised. He is rushed to St. Mary’s hospital. His parents rush to meet him. His breathing is compromised, he is struggling, he is choking to death. They don’t have the tools there to operate; he will need to be rushed to U of M. As a last ditch effort, they give him a drug which has only worked 2 other times in 8 years at St. Mary’s….it causes spasms that will hopefully help his body to dispel the object. As they prep him to move him into an ambulance, the medicine kicks in and he starts to violently throw-up…thankfully, the steak reappears. He starts breathing fully and announces he feels better. He is released from the hospital that night. Needless to say his Mom slept with him and held him tight. Crazy thing…isn’t it? Something we do everyday…eating…could, under unfortunate circumstances, be the last thing we do. Just a reminder of how precious life is….that our time here is finite…make sure that what you are doing, you love doing and that you are living your life to the fullest and hugging those around you!

Ok…so for those of you who can stand to read on and aren’t squirting tears…I’ll share one more story with you.

Yesterday, just as I was getting ready to leave work, I went on the internet to look up some information on the procedure Lisa was having done today. Once I got the information, I made the mistake of checking out a website I had been avoiding…Children’s Neuroblastoma Cancer Foundation. I had found this site last week and while it appeared to have good info, I found that I was reluctant to read it. When it came up again yesterday in the search for Lisa’s procedures, I thought…hmmm maybe I should check this out. I realized I have not been doing the research I normally do when life throws me a curve ball and was a bit surprised by that and thought…good as time as any, might as well do some reading. Welllllll….now I know why I’ve stayed away from researching and the website. The info and numbers were so dismal it’s hard for me to function when I read them. I froze up with fear and pain about what the future (if there is a future) for Lisa might hold. So with tears in my eyes, I clicked close the “Keep breathing” video I was viewing on the website. I worked to regain my composure, tidied my desk and left work. I was feeling pretty devastated and kicking myself for reading the website. I just wanted to get home and see Lisa and hold her, I felt so empty and frightened. As I pulled out of the parking lot, I noticed it was 6:15 and figured at this time of day, most of the traffic would’ve cleared and if I pushed the speed limit I could get home quickly. I was still agonizing and I started praying/pleading with God. Please, just give me a sign…you’ve done it before….I need something….maybe another song? I flipped on the radio--ok, not a song. Maybe another billboard…glance around--nothing. Now the doubt and silliness kick in…as if God would send me a sign just because I demand it. Really…and were those other times signs or just coincidences? Some serious self-talk started up. Ok…pull it together, don’t start ditching your faith and questioning things. Calm down, Lisa’s not dying this minute. The thoughts just kept swarming. I pulled on I-94 and got up to speed. Please God, really just send me a sign…anything…it doesn’t have to be that she’s going to make it, just something to let me know you’re there, something to let me know you’re watching over us and we are going to be safe and you’ll guide us through. As I continued my travels, the tears and thoughts just kept flowing. Man, I was just telling someone how I thought that things might work out…what if they don’t?.. snap out of it…stupid website….quit crying… get a grip. I continued to drive and argue with myself. I spotted a motorcycle in the left lane and not wanting to be behind such a small vehicle, proceeded to pass on the right. As I was starting to pass, I thought what a cool motorcycle, I’ve never seen one like that before. As I cruised by and looked in my side-view mirror, I saw STATE POLICE printed on the visor. EEK! Sh@! Great just what I need…the siren was almost instantaneous as was my pulling over. I tried to get control of the tears and sobs. Apparently I was unsuccessful…the first thing the officer asked me was “Mam, is something wrong?” “Nope” I said. “Then why are you crying” he asked. “It’s nothing” I sniffled. I already had my license out and he asked for the registration. As I handed him the papers, I was still sniffling. “Mam, are you going to be Ok” he questioned. “I’m sorry” I said, “I’m just having a bad moment…my daughter was recently diagnosed with cancer and prognosis is not good” The officer told me to hold tight, and went off to check my ID. I again tried to regain composure. By the time he came back, I thought I had the tears under control. He handed me my ID and said the unexpected. “How old is your daughter?” I started crying again “3” I answered. “Mam” he stated “I know what you are going through…I am a cancer survivor…leukemia…I just finished my treatments a few months ago” I looked at him and said “I’m so sorry…you look good…how are you doing?” He answered “I’m doing great Mam”. I looked him right in the eye and said “Thank you, thank you for pulling me over and keeping me safe. Just before you pulled me over I had been praying for God for a sign…something to let me know that I could get through this, that God would take care of us and keep us safe…you might be that sign”. He nodded and said “Mam, I pulled you over because you were speeding…I’m not going to give you a ticket but I want you to slow down. You need to be there for your daughter, you need to stay safe and take care of her”. I thanked him one more time and pulled away in a bit of shock. So…..perhaps one of God’s signs? The skeptics in the world are probably laughing their heads off right now at the idea. Or as many of the McMaster’s like to tease..sign…God was sending you all kind of signs…they are called speed limit signs and have the big number 70 on them! But I do wonder, I asked God for a sign that would let me know he was there watching over me and keeping me safe….isn’t that what a police officer does on a daily basis? Hmmmmmm….as I pulled away I kept checking my rear view mirror…there was no traffic when I pulled out and a few seconds later, there were tons of cars, but no motorcycle. Perhaps the officer was off on a mission to keep others safe. As for me, I slowed down, felt a bit more at piece and realized the sun was shining, it was a gorgeous day and I had four wonderful kids, a great husband all alive and well waiting for me at home. It really doesn’t matter who thinks this was a sign…what matters the incident brought me peace and strength and the willingness to keep trying and to BELIEVE.

So, finally, signing off of this very long post. Keep praying, keep hoping and keep believing!

Tuesday, July 22, 2008

Oh hey, new addition to the fam... Introducing Bubbles! Grand Del (My Aunt Delphine) bought Lisa a portable fish bowl so now we are the keepers of Mr.(or Ms.) Bubbles.

Tuesday 7/22

Today I took Lisa for a couple appointments. The first was an echocardiogram that took about 15 minutes while she watched a video. As far as I could tell it was basically the same as an ulrasound, non-invasive, no pain, got a sticker, life is good.

The second appointment was a electrocardiogram. Place a bunch of stickers all over her chest and arms, connect the leads to the computer thingy, count to 10 while watching the screen, and all done. Get a couple stickers and again, life is good.

Third appointment, MIBG injection. Ut oh, that doesn't sound like fun. They want to inject the dye, a radio active dye, through it's own IV and not throught the port in her chest. Here we go... after 15 minutes of Lisa screaming at the nurses and 3 pokes later the staff gives in and injects her through the port in her chest anyway. Poor thing. Between her pudgy little arms and her evasive little veins, she a tough one to hit a vien on. She historically has been a hard one to stick and if the staff at Mott's can't get a vein, thats got to indicate how difficult hers can be.
So she got a girraffe beanie baby for her trouble. Afterward she skipped out happy as can be. Life is good again. Tomorrow (Wednesday) Linda takes her for the MIBG scan and MRI which she'll need to be anesthetized for. She's never happy coming out of that. Linda will be there from 8:30 - 4:00 if anybody wants to visit!

Saturday, July 19, 2008


Lisa enjoing the staple McMaster breakfast of toast and butter. Mmm, Daddy makes the best toast!

Friday, July 18, 2008

Lisa is doing great

Sorry for all the missed posts. We've been doing chemo all week and Lisa is running around like a crazy woman. You would think I'm the one getting the drugs...I walk around half-asleep and bleary eyed and Lisa just keeps going and going. It's a great thing and we're estatic that she's handling the treatments so well. Her appetite has been good except for chemo week when she seems to eat less and is much more picky. But so far, she's not lost any weight and except for the blasted UTI that keeps coming back she's been pretty healthy.

We had some vistors this week at chemo and that helped greatly to reduce the stress. I was still tired though...funny, it's just as tiring watching my friends chase Lisa as it is to chase her myself!! So hi and thanks to the Pollard, Grendysa, Enright families and Patricia for visiting and making our days go a bit faster!

Today is last day of chemo for this treatment. The next 2 weeks are full of tests...EKG, Echo, MIBG, MRI, Bone Scan... All of the testing is planned for outpatient unless she gets an infection and gets admitted. I feel pretty optimistic that won't happen based on her first chemo. However, all of that recovery time was spent at the lake breathing fresh air...much of this recovery will be spent going in and out of the hospital where there are germs. So keep your fingers crossed and your hands praying.

Ok..that's it for now...I have to go chase Lisa!

Thursday 7/18

These days there are so many people trying to help us in some way or another it’s a very odd feeling I must say. Weather it’s dropping off a meal, taking a kid or two or three or four off our hands for a few hours or a night, or picking something up or dropping something off, sending a card, or saying a prayer, it’s overwhelming at times and words alone could never express the depth of our gratitude. You people are awesome. If you’re reading this you are awesome.

So what is it I’m trying to say? I guess it’s that I’ve struggled many times these past few weeks with the ability to gracefully accept help from everyone. I think I’ve come to awareness that people desire and need to help one another to be truly happy whether they realize it themselves or not. At least reflecting at my own past I realize that those times when I thought I was giving, or helping, or sacrificing something for someone else that those were the times when I was happiest. “To give is to receive” as the saying goes. While this most recent drama has been a “setback”, we’ve experienced an incredible streak of good fortune to date and if it’s true that you make your own luck then I really should write down that recipe. So with that said, and even under the current circumstances, I still feel so blessed. I simply cannot accept that there won’t be some blessing that is the result of all this.

Thank you for lending us courage, support, faith, love, and hope. Lisa is taking this all remarkably well so whatever it is that you are doing, please keep the positive energy flowing. Next week she has a battery of tests to determine the effects of the treatment thus far and we’re optimistic that she is responding as well internally as she appears to be externally. Thank you all again, you are awesome...Mike

Tuesday, July 15, 2008

Life is too short

Life is too short to wake up with regrets.
So love the people who treat you right.
Love the ones who don't just because you can.
Believe everything happens for a reason.
If you get a second chance, grab it with both hands.
If it changes your life, let it.
Kiss slowly. Forgive quickly.
God never said life would be easy.
He just promised it would be worth it.

Not sure who wrote this quote, but I have it hanging above my desk at work. My brain has turned to mush these past few days and this poem gave me a jump start this morning.

So to all of you reading, keep the poem in mind and go out and live today as if it were your never know, it just might be!

Monday, July 14, 2008

Chemo Round 2

First day of round 2 of chemo...Lisa is doing good. It was a lonnnnnnnnggggg morning. Had to be here at 8:10 for blood here at 8:15 (pretty darn good for the "I hate mornings" parent).

Had a hard time getting the blood flowing. The tech was getting a little frustrated and finally called in a different person to take over. Lisa must have moved just the the right way with the second tech cause after a few jiggles the blood started flowing.

Got out of there and checked in for 9:15 appt with doc prior to 9:30 chemo. We WAITED OVER 45 MINUTES before doc came in. This is pretty unusual for U/M. You know me though...I was calm, cool and collected...hahahahahahahahahahaha (I crack myself up!)

Seriously...we were waiting so long, the infusion nurse came looking for us to get Lisa started on her hydration while we waited for doctor. Doctor finally came. He did the preliminary checks and Q&A and then said he would update the attending and they would be right back. was another 45 minutes. While the doctor was extremely competent, I have no idea why we were waiting in a boring exam room when the infusion room was just around the corner. They finally came in and we discussed the ongoing urinary tract infection and the skin rash she is getting from her bandages. The doctor also reminded me how things were going to start (?!) getting pretty chaotic next week. Besides the chemo side-effects and blood counts, Lisa will be going back and forth for a number of scans, MRIs and other tests to see if the chemo is working in the next two weeks. She will also be having bone marrow collection started soon---ugh. Trying to schedule all these appts in a 2 week window is proving to be a challenge. However, the doctor said if she spikes a fever or gets an infection, they can admit her and just do the tests then. I'm pretty sure he wanted me to think this was a good thing, somehow I can't quite embrace this logic.

We finally got into the infusion room around 11:45. The nurses were waiting for us and had saved a big chair. Thank goodness. Lisa did great and spent most of the day playing and even told me to go away so she could play with one of the child life specialists.

The doctors came to update me on their discussion and determined they wanted to get a urine sample from Lisa through a catheter. Nice....that was a lot of fun. The nurses said she did a great job for a kid her was hard for me to tell, seemed like a lot of yelling going on. Although when they were done getting the sample, Lisa hit the nurse with urine, so I figure she gets extra credit for aim.

We finished up around 4:30 and we're home by 5, not bad for a chemo round.

After this week, if everything is on track and testing goes okay in the next two weeks she will start her third round of chemo. That round will be done as inpatient for 3-4 days..can you say yahoo!! Mike and I get to pretend we're camping as we sleep on a tiny cot next to Lisa's big comfy, adjustable hospital bed. Good thing we're both so adventurous!!;)

Saturday, July 12, 2008

Happy Saturday

Lisa is doing well. She has been getting around pretty good and has been eating great. She has some leg pain, but it is manageable. A dose of Benadryl keeps her sleeping through the night.

She seems pretty happy and definitely rules the household and keeps us laughing with her crazy antics.

We are gearing up for chemo this week which will be done outpatient M-F for about 8 hours a day. I know there are many of you who have offered to come to the hospital and visit. This would be nice for Lisa (and us!) and might make the time go by a little quicker. If you are interested in visiting during chemo this week, please sign-up here so that we don't have too many people at the same time; it can get crowded. Also, it is a kid-friendly place and it can be pretty hectic with chemo kids running around with with their poles. You might want to bring earplugs and shin guards! Other children can visit so long as they are healthy.

I want to thank everyone for their support and prayers. I'm certain these prayers are giving us much strength and are helping us. The whole cancer thing is not as traumatic anymore (a bit unbelievable I know), it has just become our daily life. We adjust and do what we got to do...but we couldn't do it without each and every one of you. So again THANK YOU. We are very blessed with many loving, caring family and friends. I've come to realize reading email, posts and cards, that not only are our family and friends praying for us, but their family and friends as well. How awesome! I'm very grateful. I'm would love to know how many states we have represented. I know we've got FL, AL, MN and CA states covered...but where else? I ask that each of you reading this blog take a minute to sign our "guest book" so everyone can see who is out there and where they are.

Thanks...keep smiling, keep reading and keep praying!

Wednesday, July 9, 2008

Can you say naive?

So, the lab calls yesterday. Lisa WBC is up, but her hemoglobin is way low. We need to bring her to hospital in morning for blood transfusion.

Ok...that sounds easy. Need to be in to get her blood screened and typed at 8, it'll take an hour and half to run screening and then she'll have transfusion. Excellent....nice, short day...I should be home by lunch.

Had blood drawn by 8:30 and then we headed upstairs to the chemo/transfusion area. We stopped in the nourishment room on the way and got breakfast...bagel for me, Popsicle for Lisa (what else!) Went into the chemo/transfusion area and asked the nurse if we should take one of the big chairs. She said "yep". When she came by a little later I asked "slow day?". She said, "Oh, no...we're going to be hopping." "Really?" I questioned "Should we not use a big chair then? I thought those were for the patients that are going to be here all day." The nurse smiled and had one of those "you poor sap" looks on her face. "Uh-oh" I said. "You have a long does a transfusion take? I thought we'd be out of here by noon." She just smiled and said " will probably be at least 6 hours....we have to get the blood typed, then get the blood, then hook her up and it's going to depend on how fast and how much blood we give her."

Can you all say "Newbie"... the nurse could.

So it's 10:50 and we're still waiting on the blood. Lisa is playing play-doh with another little girl (that makes this a little easier) and I'm working on my computer. Glad I grabbed my power cord on the way out the door. I didn't bring much else for this "short trip" extra clothes for Lisa, not enough pull-ups, no food, no stroller. It's going to be a long day.

Good thing we got the big chair...I'm going to need a nap!

Monday, July 7, 2008

She's Molting

Well hope everyone had a great holiday weekend. We enjoyed our last week at the Lake House until September ( we've got renters until then). Lisa had a good weekend. She seems to be feeling well even though her immunity is low. She's eating good and giggling a lot.

We enjoyed the 4th of July fireworks over the lake and got our own private show on the 5th when our neighbor Scott decided he wanted to put on a show. Mike helped him light of some fireworks from the middle of the lake. As the older kids yelled "encore", Lisa shouted "popcorn". I don't think she was hungry, that's what she thought her sibs were saying. On Saturday, I noticed that there was little tuft of hair on her pillow. I warned the rest that it was starting to come out. Yesterday I noticed a bit more. Today she started molting. I've heard people describe what it's like losing your hair to cancer, but I still can't believe it. Within 48 hours we went from a few strands to hair all over everything. She even had Chief beat as to how much hair she dropped. It was everywhere. While 2 days ago I thought we had a week, this morning I thought perhaps tomorrow or Wed we'd have to shave it. By 4:00 today, we were calling Matt, our good friend and Lisa's godfather. It's time, no use putting off the inevitable. Matt came right over and joined Lisa in a head shaving party. He promised her that every minute she was hairless, he would be too. At first she was a bit apprehensive, but she helped shave his head. Then it was her turn, she didn't want to, but she did it. No tears, just some protest. When all was said and done, she just rubbed her head and smiled. Her first glimpse in the mirror a while later caused her eyebrows to raise, then she smiled and went on her merry way.

I still look twice when she reappears in my sight....she just looks so different...not used to counting a baldy instead of a curly in my headcount!

She's Molting

Hope you all had a good weekend. We enjoyed our last week at the Lake House until September (it's rented until then). Lisa felt pretty good and was playing and eating a lot.

We enjoyed the fireworks on the 4th and we're treated to another show on the 5th by our neighbor Scott. He and Mike did a 20 minute show from the middle of the Lake.

On Saturday I noticed some tufts of Lisa's hair on a pillow. I warned the others that it had begun. I noticed a little more yesterday and figured we probably had until the end of the week. Today, there was hair falling out all over the place, she was shedding worse than Chief. I figured Wednesday would be the day.
By 4:00, we were calling Matt...our good friend and Lisa's godfather for the head shaving party. He arrived and Lisa tentatively shaved his head. Then it was her turn. She wasn't happy, but she didn't shed any tears. After they were all done, she rubbed her head and Mr. Matt's. Later when she caught a glimpse in the mirror, her eyebrow went up and she looked a little surprised.
She's a baldy baby now, but still sassy and acting like a screwball. I just need to remember to keep an eye out for skin instead of curls when doing my headcount!

Friday, July 4, 2008

Happy Fourth of July

Lisa is doing great. She's been feeling really good the last 3 days and you would never know there was a thing wrong by looking at her. Right now she is covered in sunscreen from head to toe because apparently she thought it would be fun to do. She's not very happy that it is on her dress.

Earlier today we planted some flower seeds that she has reminded me every day that we need to do.

We are just hanging out at the lake and enjoying the sun. The temperature could be a bit warmer, but it doesn't seem to bother the kids...they are swimming away in the lake.

Last night we warmed up with some chicken noodle soup and lots of goodies...compliments of Aunt was delicious.

Our zookeeper--Lisa F.-- is feeling left out of the blog...she's been with us all week and getting a little stir crazy and wants credit for the flower pictures in the blog. So, everyone, Lisa F. took the pictures today. She'll be heading home in a bit. Have a great weekend Lisa and we'll see you on Tuesday.

Wednesday, July 2, 2008

Good Day

Yesterday and today have been great days for Lisa (despite her low blood counts). She's up and about and playing and eating. Today she asked to go to daycare so she could play with her friend.

Tuesday, July 1, 2008

Blood Counts

Lisa's blood counts are back and as expected very low.

We need to be on high alert for infection and keep her away from crowds, sick people and germs.

Her hemoglobin is at 9.2
Her WBC is below .4
Her Platelets are about 86
And her ANC is below 400 which means they can't get an accurate reading.
She will get blood work and a shot every day until her ANC is > than 1500

For more info re: Blood counts you can check out these sites
Blood count info
Cincinnati Childrens

Her UTI is still causing concern and now they see blood in her urine so we need to keep a close eye on all that.

So long as her face doesn't take on the color of her long lost family members we should be okay.