March for Babies

Sunday, August 31, 2008


The fever started going down after dinner. Then it was like a whole different kid came out. She wasn't clingy and whiney anymore and started running all over the house and practicing her jumping. (She can get all but her left toes off the ground on a regular basis but has only gotten both feet completely off the floor a couple of times, both this weekend.)
Will still update tomorrow after our visit to the clinic.

Mere :O)
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In the filter industry HT stands for High-Temp. The handbook says not to page the doctor on call until the temp under her arm reaches 101 degrees (F) or more. Manda's is hovering around 100.1-100.4 degrees. She is acting like she does not feel well but I don't have a specific complaint to give the doctor as a second symptom. It lists headache and digestive upset but I can't say she has either of those yet. I will keep checking her temp, but I am really hoping this does not push back her chemo again. We are supposed to start a 5-day stint of Irinotecan tomorrow.
In other new, we spent the morning at the zoo with Uncle Brian and Cousins Savanna and Lexie. We saw the new big lion exhibit and we bought a stuffed lion for Manda. I told her it was a friend for Meow. She held it for about a minute and then said, "All done lion" and handed it back to me. Oh well. SHe came home and took a nap and woke up with the fever. (Too much sun?)
Keep your fingers crossed for a coldfront on the Manda radar. I'll update tomorrow as to whether we can actually start this week of treatments.
Mere :O)
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Friday, August 29, 2008

Good News All Over the Place!

Manda's numbers are up again. She went from 12% up to 63% so we are good to go for chemo on Monday. The staff member who will be showing up on her Holiday to give chemo to the three kids who need it is our primary nurse who we LOVE and we are first in line so no waiting! How cool is that? This will put us right back on track. When we moved up her inpatient chemo stay we gained about a week in this chemo cycle. By missing last week and doing the chemo next week we basically just reset ourselves to be right on time again. Still looking at surgery probably in September for the tumor resection.
Also, Mommy is finally going to take a couple of hours for herself and get a massage and a spa facial tomorrow. This has nothing to do with beauty, but rather the most relaxation we can squeaze into a two-hour period. Wish me luck for a lasting effect.
Everyone enjoy the long weekend!

Mere :O)
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Monday, August 25, 2008


Well, it couldn't all go smoothly, could it? We came across a minor setback today. Nothing major. Her numbers are down. Actually just one number is down, but it is the important one. Her ANC is 603 which puts her into the quarantine zone again. Her white counts, platelets and hemoglobin are all fine but the ANC was the deal breaker. They cannot give her the chemo this week.
SO, she will get the Neupogen shots tonight, tomorrow and Wednesday. They will check her again on Thursday and if all looks good then we will try to do the chemo next week. They have a nurse coming in on Monday for another patient who needed to be seen on the holiday so at least we are not the only ones messing up the long weekend for the clinic staff.
Our short-term goal: Keep the girl healthy and try again next week.

Mere :O)
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Thursday, August 21, 2008

I Should Know Better

By now, you would think I would just give in to having complete confidence in Manda's ability to be fabulous in everything she attempts.  When I woke her up this morning she looked at me then rolled over, pulled Meow over her head and said, "More nigh-night".  I told her we both wished for that but unfortunately there was no chance of it, "and look, Elmo is already up and ready to go!" (pointing to the Elmo doll I had placed on the changing table)  This did not do much to impress her.
We went to the clinic today for this week's dose of chemo.  She did not have lab work done on Monday and we knew her numbers would be falling this week since we have been spacing out the shots.  I actually covered my eyes when the nurse brought the paper in with the results.  They were good.  Low yes, but not in the danger zone low like last month.  She is hovering just above Q-level.  Yay!  She just never ceases to amaze and delight.
In other news, her new vocabulary words this month are "Love You".  From her it comes out sounding a bit like, "LA-leeew" but we know what she means.  We were on our way to Grammy's house yesterday morning when I heard her say, "LA-lew Meow".  I smiled and wanted to cry at the same time. 
Last but not least, I would like to point out the fact that she has not lost all of her hair.  She has the cute pixie cut we had done when it was falling out in big snarling clumps last month, but it appears her hair has just thinned out a lot instead of going totally bald.  She takes after her great-grandfather you see.  There is no denying it, she is a Riley.

Mere :0)

Friday, August 15, 2008


Manda is doing well.  Better than expected actually which is why her inpatient chemo was moved up a week.  We were thinking that we still would not be able to go on our annual weekend at Michigan International Speedway for the NASCAR race this weekend since her numbers would be dropping about now.  BUT, they were up quite high on Thursday and we started holding off on the shots that day to let the numbers drop off until Monday when she will get her next shot, then check the labs again next Thursday when she gets her next chemo. I asked when she was inpatient about continuing the shots so that the white blood cells and the ANC would not drop so low in hopes of staying out of quarantine but they explained that having her numbers drop that low is part of the treatment itself.  They WANT her to drop and then come back up again.  So, it will happen whether we are here or at MIS.  Grammy can take the same precautions we can and IF something were to happen, say if she were to develop a fever, then she would call the Oncologist on-call this weekend and then call us and we would be home in a couple of hours.  It took me quite a while to come to this level-headed conclusion.  I was afraid we would be down at the track and I would be consumed with worry and panic and ruin the weekend.  However, in seeing how well she is doing, getting into trouble all over the place, and needing a break myself, we are going. Yay!
We are officially on vacation...for the weekend.  As Amanda says when she sees the cars racing on TV, or for that matter, when I speed up to pull onto the highway in the morning...ZOOOOOOM!!!!!! 

Mere :0)

Sunday, August 10, 2008

Olympic Effort

It may be re-adjusting to life at home or it may be Manda has been inspired by the Olympics but, she is attempting the world record for time-outs in a single day. Check your calendars, 8-10-08 may go into the record books right here in the US. And, I am such a sap that I can tune into any sporting event right at the end and cry because I know someone's life dreams have just been achieved...and shattered, I will reserve my tears for the sports for now.
On another note: How is it that Amanda is the one in chemo, and while her appetite is small she has not exhibited signs of nausea, yet here I am cleaning up after the dog throws up because she is on a self-induced hunger strike!?!?!?!
Mere :O)
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Friday, August 8, 2008


After waking up from her late nap she was unplugged from the IV and we packed up and headed home. Daddy ran to get ice cream since that seems to be what she wants to eat at the moment and we are settling in for the weekend.
Home Sweet Home.
Mere :O)
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Wednesday, August 6, 2008


Amanda has been up since 7:30am.  We saw her Occupational Therapist this morning at the house at 8:45am.  At 10:00am I applied the EMLA cream which numbs up the skin over her port so when they accessed her at the lab she wouldn't feel it.  We checked into the Day Clinic at 11:00am.  She played with the train, she played with the Superman car which is fun but makes the most horrible racket you want to throw the thing out the window.  She played with the train some more, she played with the kitchen, she played with the other train, she ran around just for the fun of it, she played with the train again, she ate lunch, she was seen by the doctors, she climbed in and out of chairs, she sat for a few moments to listen to a new Elmo book but got up before it ended.  Grammy and I wanted to know how the story ended so we continued.  She played with the train some more, she opened and closed the toy cabinet doors. She played with "Bee's" keys.  ("Bee" is not actually the woman's name but she played a game with bees in it with Manda one day and ever since she has been known as Bee.  There is no escaping it.)  She played with the computer, she played with the doll house, she played with the train again, she played with the controllers to the video game even though they were not hooked up and so, did nothing.  She went full-tilt all day long.  At 4:45pm we got her room assignment.  Yay! Our own room meant she could start watching her Elmo DVDs!  She got her dinner tray which had some mighty tasty looking roasted turkey, garlic mashed potatoes and green beans.  She ate a bit of each plus some melon and pretzels.  She played with the drawer in her room putting Meow and Elmo in, shutting it, opening it back up, taking them out, then starting all over again...until she slammed her fingers in the drawer and we had to end that game. She played with the rocking chair in her room long enough for Daddy to decide it was a death trap and we should request a more solid chair that sits a bit closer to the ground. She played "slide" in her crib meaning she would stand up holding onto the bars and let her feet slide out so that she would fall on her bottom shouting, "Wheeee"!  This of course was also outlawed by Daddy.  She sat on our laps only grudgingly while we read some books and then it was lights out at 8:45pm.  It has been a LONG day. Daddy went home and Manda and I got ready for bed. 
Did you see any mention in the previous paragraph about a nap?  Hmm?  No?  Of Course You Didn't!  She has not napped ALL DAY!  Oh, and when I said lights out at 8:45 don't think for a minute she actually went to sleep.  I couldn't even get her to lay down!  It became a battle of wills which included her slinging both Elmo and Meow across the room, she took off her socks and threw her ice on the floor.  The IV poll started beeping a warning that there was a problem with the tube.  Oh yeah, the problem was she had twisted the tube up into a kink and was CHEWING on it!  You see, the last time we were here we got a room fairly early in the day so she had settled into her surroundings before bed.  The next day she had her biopsy and after that she didn't feel well, sore and tired, so she pretty much just stayed in bed and watched her videos the whole time. She doesn't feel that way this time.  She's getting her chemo tonight, they are still loading her full of the pre-medications.  We will both sleep through the IV of the actual chemo meds.  I say that, the IV pump is directly next to my couch/bed and makes a constant rattling/clicking sound as it goes through its paces.  Between that and 4:00am vital signs, she will probably sleep better than I will tonight.  So, at 10:10pm she has finally chosen to lay on her right side with Meow over her shoulder so that she can look out through the bars of the crib and see both the TV and me.  She is not quite asleep yet but heading in that direction.  It took some rocking with Mommy in the "Brown Wood" rocking chair (she needs to describe it every so often to make sure we are all up to date on the chair's identification) to get her to settle down.  Once my left arm lost all feeling I decided it was once and for all Night-Night Time.  This time, she believed me.  I think she was feeling a bit out of place and nervous about the strange bed again. Once I had made up my mind that it wasn't a discipline issue but rather a make-her-feel-comfortable-in-this-strange/scary-place issue things improved quickly. (Mommies learn something new every day too!) 
So, now that we are all caught up, I need to go to sleep too since I did not get a nap today either and I foresee another long day ahead tomorrow.  Shshshshshshsh, night-night.

Mere :0)


Monday, August 4, 2008


I have often said that Amanda was not premature but rather, she was advanced placement. She did not need that third trimester. This is a joke of course, but she has done exceptionally well for a 24-weeker. Today, her lab appointment proved this once again. Her numbers are through the roof. The initial meaning of this was No Pokes until she was to go back for inpatient chemo 10 days from now. Yay! Then, my phone rang. It was our nurse from the clinic asking if we could move up her admission to say, the day after tomorrow. Holy Cow! With a bit of juggling we can pull this off.
The reason they want to move up the schedule is because she has done better than they expected. They were going to give us the extra week because they expected her to need that time for her blood counts to go back up. Not our girl! So, tomorrow will be prepping for the rest of the week inpatient. They told us at the beginning that everything was written in pencil. Moving up this chemo treatment will move up everything else too, which means we are that much closer to surgery. Stay tuned, we'll see what is next on this rollercoaster. I envision a lot of Elmo in the near future.
Mere :O)
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Saturday, August 2, 2008

Lions, and Tigers and BAERs, Oh My!

Meow is a Lion. He is Amanda's best friend in the whole world. He came as a gift from the MGM Grand in Las Vegas (Thanks Nancy!!!!). He has been through the washer and dryer a couple of times. His mane has now felted itself into a tight afro. His plastic whiskers melted a bit into bendy things that looked more alien than animal so I eventually cut them off. All of these changes have made him that much more huggable. (Much less tickling of the nose.) So, our daughter already knows something about unconditional love. Of course, this is also evident in the fact that she will cling to me and at the same time plead "Noooo Pokes"! I am the only one who pokes her these days. When we go to the hospital for labs she gets a numbing cream over her port so blood draws and chemo are painless. It hurts more when we take the band-aids off the next day. Meow is helping us again this weekend. He is playing patient while Manda uses her new doctor toys to check his temperature, blood pressure, listens to his heart and lungs and looks in his ears, nose and mouth. I think these play sessions show us just how far she has come in the last month. Yes, it has been a month. She had her first chemo treatment on the first of July. Daddy started his new job the same day so he has 30 days in there already. It seems both a long and a short time.
When inpatient, Amanda is supposed to wear the hospital issued jammies which are the children's version of the gowns that cover 3/4 of one's personal places. These jammies feature sleeping baby tigers which I assume are supposed to be cute and induce feelings of tranquility at the same time. The problem is, even the small sized jammies cannot be snugged up tight enough to fit Amanda. The pants literally fall right off of her. The shirt hangs down to her knees and could act as a night-shirt in its own right, except for one thing. Manda has a habit of opening the tabs on her diapers if she has access to them. If she is wearing shorts or pants she leaves the diapers on. When dealing with a child who is NOT yet potty-trained AND who is dealing with diarrhea you want the diaper to stay ON. So, I am already planning what to pack for our next trip to the hospital (Aug 14-16) and I will include PJ pants and shorts for her to wear with her tiger shirt.
On Wednesday, Manda had a BAER test. (Tell the truth, you either didn't notice the spelling in the title or you thought I made a typo right?) Actually, BAER stands for Brainstem Auditory Evoked Response test. Since one of the chemo drugs can damage her ability to hear the high frequencies, she needs to have her hearing checked after/before each dose. She once again passed with flying colors. So far, she has not had any major reactions to the chemo drugs we are using. I said it when she was first diagnosed and everything was SO new and SOOOO scary. Amanda has come out with the best case scenario for everything she has ever faced. She was a 24-weeker but even the doctors can't tell if they have not read her chart. Her heart defect healed itself with no intervention. She never had so much as a sniffle until she went to daycare, which we did in part to build her immune system. (In short, we wanted her to get sick. They did not tell us that WE would also get sick! This should be in bold print in the paperwork when you register the child.) Basically, what I am saying is that I have faith in my girl to finish treatment cancer free. This will be one more story we can tell to our future In-Laws about how she has given us a hard time. At the same time, emotions are running very close to the surface these days. Songs in the car, TV shows (or commercials), anything that tweaks the heart-strings even a little bit can start the tears flowing. I guess I'm just a softy. I just keep thinking back to time I spent with a girlfriend after her daughter was born. In the midst of hormones and nursing and figuring out the newborn routine she looked at me one day with tears flowing down her cheeks and said, "It's a crying day". I just knodded my head and said, "Okay", and it was. Sometimes, you have to vent the boiler so that it doesn't blow.
Labs on Monday, hoping to send more good news.

Mere :O)
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