12.29.2009

Festivities


Wow- I haven't posted in a week! We've been busy enjoying the holidays, my birthday, and anxiously awaiting the arrival of the newest member of our family (not here yet, alas).

Mollie proclaimed this the best Christmas ever and gave me a big hug and thank you the other night. She especially liked decorating, opening gifts, and eating dinner on our "fancy" china in the dining room. That pretty much covers it.

Matt's parents are still here helping us out; they took the girls up to Snow Hill to visit the great grandparents on the 26th. Matt and I took that opportunity to shop around for a "big girl" bed for Lucy. Mollie and Lucy now officially share a room! Mollie also gave me a big hug and thank you for that (we'll see if that attitude changes over the next few years).

Mollie made me some lovely gifts for my birthday (a necklace, a ring, and a few other items). She spent hours working on them all by herself. She also picked out my favorite kind of cake (chocolate with white frosting) and was just really excited to make my birthday special. That little girl is the sweetest!

On the medical front, Mollie seems to be doing okay. She has had a little nausea (thank goodness for zofran), but hasn't complained of much else. Tonight she had a very slight fever at bedtime (99.5). By the time I gave her her chemo a few hours later, the temp was down to 99. So... I hope it's nothing other than normal variation in body temperature. She hasn't had any other symptoms of illness except an occasional cough. We are watching her very, very closely.

Update: No fever this morning (98.2) and Mollie is feeling good today!


Viewing the lights at Hopelands Gardens

Trying out the new wheels from Santa

12.23.2009

Merry Christmas!



We wish a very happy Christmas to all our friends and family, near and far! This year has been wonderful and challenging and we are so thankful for the prayers and support (physical & emotional) we have. We don't always get the chance to respond to the e mails, phone calls, letters, etc., but please know how much we appreciate them!

Here's to a joyous holiday for everyone and healthy, happy new year!

12.20.2009

All Is Well

We're still a family of 4, but expecting this baby any day now. Matt got a fortune cookie the other night that said:

A short stranger will soon enter your life with blessings to share.


We are still waiting.

Mollie is now officially on winter break. Saturday, she and I went to see the Nutcracker at USC Aiken. She had a great time and was pleased to get a lot of comments about how cute her outfit was (she picked it out). The camera is already packed in the car ready for the hospital trip.... I guess I'll have to pull it out and post a picture! We were going to grab a bite to eat and then head home, but decided to go see the Christmas lights in Hopelands Gardens. We had attempted to do this last weekend, but they were closed due to inclement weather so we decided to take advantage of the clear (but cold) night. Matt and Lucy met us for dinner and light-viewing. We also ran in to some friends we hadn't seen in a while... so it was a good visit.

Mollie and Lucy are both feeling good, full of Christmas spirit, and enjoying having grandpa here visiting. We baked cookies last night and plan to decorate them today.

12.17.2009

A Better (& Busy) Day

Today was a much better day! Grandpa Charlie is here helping out, Matt's back felt pretty good, I felt good, and the kids were happy and excited for Christmas events at school. Lucy had a little Christmas party at her preschool and Mollie had a holiday program and party in her class. It was great fun! Mollie had memorized her lines for the "ABCs of Christmas" performance and she did a great job!

This afternoon, Mollie's Daisy scout troop had their Christmas party. Mollie had an absolute blast and did not want to leave. It was great to see her feeling so good, jumping on the trampoline, playing with the other kids, and fully enjoying herself.

12.16.2009

What's Up?

The last few days have been difficult for several reasons. The good news is that Mollie and Lucy are fine. Mollie stayed home from school yesterday because she woke up looking somewhat ill and saying she didn't feel well. I didn't feel well either (lots of GI difficulties) and Matt's back was bothering him. So, I left the girls at home with him while I went to my doctor's appointment.

I couldn't stop throwing up at my appointment so my doc sent me over to the hospital (L&D) for some IV hydration and anti-nausea medication. We figured I would be there a few hours and then get discharged. But, when I finally started to feel better, the baby's heart rate decided to climb and they admitted me overnight for monitoring. I was having a lot of contractions and indications that I might be in labor, so Matt dropped the girls off at a neighbor's (thanks Michelle!!) and came down to MCG. His back was bothering him so much, and I didn't seem to be in active labor, so he ended up coming home. I got released this morning (the heartrate thing was probably due to the nausea medication) and feel much better (although, I suspect this baby will be born sooner rather than later). However, Matt's back is feeling much, much worse, he is also throwing up, and can barely stand to be out of bed. Mollie threw up this morning too, but we chalked it up to her big dose of chemo (she gets methotrexate and 6MP on Tuesday nights) because she seemed to feel fine. So, I ended up taking her in to school after I got home. I am concerned that she will get this nasty GI illness. And then tonight we noticed some redness/rash on her bottom. We'll have to keep on top of that and make sure it doesn't get worse. I may end up taking her in to clinic if it doesn't look better by tomorrow.

So, in a nutshell, we are overwhelmed. It's stressful. Obviously. We are looking forward to Grandpa Charlie's arrival. It will be a big relief to not have to worry about the kids if we have to take off for the hospital in a moment's notice.

And, oh yeah, Christmas is next week. Sometimes it feels like we just can't catch a break!

12.13.2009

In the Christmas Mood


We had a quiet, productive weekend. We all had a nice time at the radiothon- we saw lots of friends from MCG, the girls got to play on the new indoor playground, and there were unlimited snacks. Mollie and Lucy were in their element!

Yesterday, we picked out our Christmas tree. It was not the highlight of Mollie's day- it was cold and she was on day 5 of steroids. But, coming home and decorating the tree while Lucy took a nap was a fun activity for Mollie. She did a beautiful job and I know she enjoyed it. We spent the evening in, watching holiday movies and drinking hot chocolate!

This morning, Mollie spent around 3 hours working on a book. Her friend Wes gave her a "make your own book kit" and Mollie made a book called "The Bear Who Loved Hot Chocolate." We still have to add the text, but she did all the pictures.

12.11.2009

Steroid update and Radiothon

Mollie has been handling this round of steroids pretty well. I've picked her up early from school every day and that seems to be working. She's not quite as exhausted and grouchy as usual for steroid week. Maybe it's all the excitement about Christmas. Whatever it is, I'll take it.

It's that time of year again. Yes, the Cares for Kids Radiothon! The radiothon raises money to directly benefit MCG Children's Medical Center. We will be participating this afternoon, 4-7 pm. I believe that's when the wagons and toys from "Wagons of Wishes" will be ceremoniously presented to the hospital. It should be a good time.

If you're local, I encourage you to listen to 104.3 WBBQ. The stories of families who have had to use Children's Medical Center are amazing. No parent expects that their child will need the services of the CMC, but so many children do. The CMC needs a lot of specialized equipment and programs just for kids, because kids are not just small adults.

If you wish to make a donation, you can do so through MCG or by calling (866) 412-KIDS (5437).

We're looking forward to the last day of steroids this month (tomorrow). Mollie is very excited to put up the Christmas tree this weekend!

12.08.2009

Clinic Update

We are home! Today was a long clinic day because Mollie had spinal methotrexate. It wasn't too bad- we got the paperwork to head over to pre-op at 11:30. Mollie had been fasting since last night so she was not too happy about any of it, but she did a great job and didn't complain very much. She ended up falling asleep in clinic. All of her counts are good (ANC 1800) so we aren't "scheduled" to go back until 4 weeks from today (coinciding almost exactly with the baby's due date).

We met Zackary and his mom for pizza afterwards and Mollie ate a lot! I just gave her the first dose of steroids; now, I'm going to try to lay down and rest for a minute. These long days at the hospital take a lot of energy!!

12.05.2009

First Christmas Event


Goodness! I can't believe how fast time is flying! We went to the county Christmas tree lighting last night. Mollie's Daisy troop led the audience in saying the Pledge of Allegiance. They did a great job and Mollie had a blast! We ran into some friends we hadn't seen in a long time (Hi Doris! Hi Amy!) and with all the Daisies and their families and Hannah and her mom, we had a nice time despite the chilly weather.

Mollie also went to a friend's birthday party earlier in the day. It was a princess tea party- right up her alley! It is fun to see her personality emerge. She is definitely one of the more quiet kids and is very sensitive to people's feelings. She doesn't like to see people be excluded or hurt. I can't help but think that her own experience with cancer has turned her into an even more caring person.

Today our whole family participated in a 5K to raise money for Wagon of Wishes- a campaign to purchase red wagons and toys for MCG Children's Medical Center. The organization sponsoring the wagon purchase was started by friends of ours; their son is a 5 year leukemia survivor. And the run was organized by another friend. It was a small group of people, but it was a lot of fun and they raised $500- enough to purchase 7 or 8 wagons for the hospital!

12.03.2009

Well...

I was planning to post that Mollie has been healthy lately and then she woke up this morning throwing up. She seems fine now, so I think this is probably a chemo side effect. This week has been really busy so far and I don't think she has gotten enough rest, so I'm hoping she'll rest up today and be feeling better by tomorrow. Getting her to lay down and nap/rest is no easy feat though- she wants to be up doing something!

11.30.2009

Thankful


I hope everyone has a peaceful and enjoyable Thanksgiving. I am glad we had no internet access at the beach! We had a lovely Thanksgiving at Edisto Island. Just our family and Matt's brother and sister-in-law. It was quiet, relaxing, scenic. Lucy and Mollie had a great time shell-seeking, running around the huge beach house, and especially visiting with uncle Sam and auntie Liv.

I am just so thankful for an uninterrupted family vacation, with all the kids (including baby #3) feeling good. Mollie and Lucy both seemed to grow a lot in the last few days. Lucy is talking even more (and with better pronunciation) and Mollie is being very motherly (even changing Lucy's diaper by herself!) and more cooperative about food.

Mollie is so excited for Christmas. She wrote a letter to Santa Claus last night (and included Lucy's wish list too). So many houses in our neighborhood are already decorated. I take a more gradual approach, but I guess it is time to start putting up some decorations and baking Christmas cookies. Our family is running/walking a 5K this weekend to raise money to buy red wagons for the Children's Medical Center- maybe we will all wear our Santa hats.

On the medical front, Mollie seems to be tolerating the 100% chemo dose (although, only the counts will tell) and is scheduled for her monthly IV chemo next week. Her energy level is pretty good, but she is really fretting about her hair. She wore a scarf to school today and that seemed to go over pretty well. I borrowed the "Why, Charlie Brown, Why" video from the clinic and she has a book about a little girl with cancer that she wants to share with her class, so I will try to arrange that for later this week. Simple answers are good for kids, so we don't want to overdo it, but Mollie seems like she really wants everyone to understand her situation. It's a fine line.

11.25.2009

Clinic Update


Mollie had yet another clinic visit yesterday to check counts and get her (seasonal) flu shot.
Her counts were great (ANC = 2900) so she's back on 100% chemo dose. She goes back in 2 weeks for IV vincristine.

She was very scared about her flu shot, but Lucy was so sweet and helped her through it. She saw Mollie crying and came up and hugged her and said, "It's okay, Ma-wee." The shot was over in a flash and when nurse Pam was rubbing Mollie's leg to make sure the antigen was distributed, Mollie said it felt like a massage!

11.20.2009

No news = good news

Mollie's been doing fine the last few days. She's energetic and eating well and acting like her normal self. I am enjoying the 75% chemo dose because.... there's no pill cutting!! Usually, we have to cut pills in half every day; because it's chemo, we're supposed to wear gloves and be really careful about cleaning up afterward. This week, it's all whole pills!

The bad news is that Mollie's hair is still falling out and it's noticeably thin. So, she has requested that we get the Charlie Brown movie (Why, Charlie Brown, Why) to show her class. And, we'll also try to get Ms. Kym to do a presentation. She is okay with people asking her questions about her hair, but she gets tired of explaining. And she really hates it when kids say she looks like a boy. We went through a phase of adults mistaking her for a boy too. Maybe this time we'll get more headbands with bows or something. She said definitely no wig- too itchy.

We're all looking forward to the weekend!

11.18.2009

Good Counts!

Mollie's counts were good yesterday:

WBC 5100
ANC 3700
Plt 308,000
Hgb 10.8

So, she is now on 75% chemo dose and will recheck counts (and get her flu shot) next week.

She was feeling good this morning and even woke up early enough to work on a Christmas craft project before school!

11.17.2009

And it's off to clinic again...

This time just for a blood count check.

Mollie had a good day at school yesterday and it is her turn to be the "special person" so she gets to show and tell today. She brought a huge fall leaf that we found over the weekend and a plastic shark toy ("because the theme is the ocean this month, Mama").

I'll pick her up after lunch and head downtown for counts. If they are up, the will probably bump her chemo dose up to 75% and then 100% in 2 weeks. I'm not sure what happens if the counts are low- I'm guessing they will hold chemo until they rebound. Hoping those counts are up!

11.15.2009

Weekend Roundup

Mollie had a pretty good weekend! We went to the zoo on Saturday (her last day of steroids). As usual, we entered through the botanical gardens - Mollie likes the gardens better anyway. She enjoyed hiking down a woodland trail to the river, but was tired by the time we actually got to the zoo. On the trail we spotted a butterfly, ladybug, baby snake, 2 lizards, and a giant beetle. So she said she already saw a bunch of animals and didn't need the zoo! I couldn't agree more. We did a very brief tour of the zoo and then headed for home.

Unfortunately, by this time Lucy was really starting to get sick (runny nose, watery eyes, cough). Today, she developed a fever and has been cranky and uncomfortable all day. Mollie played with Isabella most of the afternon. She had a lot of emotional ups and downs during the day (steroid withdrawal) but tonight she is back to her usual self. Now, if only we can keep her from getting whatever Lucy has...

11.13.2009

Running!

Just after the start

Today, Mollie participated in a "fun run" in honor of Veterans Day. The run was a mile- Mollie probably ended up doing a little more than half. We're really proud of her! Just consider what she's been up against recently: 1) a 2 week hospitalization for H1N1 flu & pneumonia; 2) 4 days of decadron (steroids); and 3) IV chemo this week (a major side effect of vincristine is foot droop and bone pain). This kid is a champ!

The superstar coming in to the finish line!

Tomorrow is her last day of steroids for this round; we're all looking forward to that. This round hasn't been too bad though. Last night, Lucy ended up throwing up all night and we tried our best to keep Mollie away from her. Lucy is better today and Mollie has not gotten sick (but I still have my fingers crossed). Mollie was sad about having to stay away from Lucy so she made her a special gift (a barf bucket full of washcloths, a stuffed animal, and a get well card). She's glad they can play together today and wants us to move Lucy's crib into her bedroom this weekend.

11.12.2009

Halfway through the steroids

Mollie went to school for half the day today. After she finally got out of bed this morning (a big challenge, especially when she is taking dexamethasone), she was very cheerful and looking forward to school. She was also really happy when I picked her up.

Afternoons are another major challenge during the steroid pulse. She started getting impatient when we went to pick up Lucy. Then she teared up, saying she wished she was still in pre-K because they got to play more and it wasn't so much work! She had a similar complaint yesterday and when I asked her about the "work" she said she was tired of doing so much "cutting and gluing!" She has a little more homework to do tonight, but I think I'll let her skip anything that involves cutting or gluing.

Oh no! Lucy just threw up...

11.11.2009

Brief Update

Today was a pretty typical "steroid" day. We stayed close to home. Mollie wasn't feeling up to doing much, but she did manage to finish a lot of make-up school work.

Her leg/hip has apparently stopped hurting (yay!) and her ANC is 700 (low, but we'll take it). I'm planning to send her to school tomorrow for a half day since she does pretty well in the morning. In the afternoon, she can take a long nap and go to Daisy scouts if she's feeling up to it.

11.10.2009

Clinic Update

Update: I checked Mollie's temp at home several times yesterday and it was normal. I still don't know what the official ANC is- I'll have to call clinic today.

Clinic went well today. We dropped Lucy off at school, then Mollie got her port accessed (easy, thanks to the very special nurses in hem/onc), then we went upstairs for my OB appointment. By the time we got back to hem/onc clinic, Mollie's chemo had arrived. So, she got her IV vincristine and we went to pick up Lucy.

Mollie is still complaining of pain in her thighs/hips. She can't pinpoint the pain, but it is making her limp slightly. It could be residual from the neupogen shots, but if it doesn't clear up in the next few days, we will go back in to clinic.

Counts:
WBC 2.4
ANC 1000 (machine count, still waiting for manual count- it's probably lower than this)
Hgb 10.0
Plt 352

If her ANC turns out to be lower than 500, we will hold her oral chemo this week. We return next Tues. for a count check. In the meantime, she starts her 5-day steroid pulse.

Our other concern is that her temp was 99.2. Not that high and the NP didn't think it was significant, but with her counts dropping from 2000 to 1000 in a few days, I worry that she's already picked up a bug of some sort. I wish I had some of those adhesive forehead thermometer strips so I could constantly monitor her temp! I think we will keep her out of school tomorrow as a precaution.

She had a great day at school yesterday (so it's hard to keep her out!) and was really happy to see her classmates. Hopefully, these concerns won't amount to anything and can resume a somewhat normal schedule soon.

11.09.2009

On the Bus


Mollie made it onto the bus this morning... as far as the rest of the day, we'll just have to wait and see. She was really complaining of pain in her hips and kind of limping around the house, but I wonder how much of that was just her being uncertain about going back to school.

It is so, so hard to tell when pains are really something to worry about (bone/hip pain can also be a symptom of AVN or relapse) and when they are just normal kid things.

We had a nice weekend. Mollie and Lucy played and played and played. Matt and I took turns running errands and hanging out with the kids. Yesterday, Mollie played at Bella's house (and I visited with her parents) all afternoon; Bella's parents brought her a Cinderella playset from Disneyworld and that kept the girls engaged for a quite a while.

My mother-in-law is undergoing hip replacement surgery today, so we are thinking about her and praying that it goes very smoothly. Mollie is looking forward to picking out flowers to send...

11.06.2009

Clinic Update

Mollie's clinic appointment went pretty well, but there's not much of an update since I don't have her counts yet (the lab tech is out sick so everything is being processed by the main lab and takes forever). Her lungs sound good and she got the green light to go to school on Monday! I'm a little nervous about sending her back out into the world of germs, but I'm always going to feel that way. They will keep her on 50% chemo dose for two weeks and then gradually step it back up to 100% if she can tolerate it. She's scheduled for IV chemo (vincristine) on Tuesday.

Her hair seems to have stopped falling out. It is very thin right now, but there's enough that she doesn't feel too different. Hopefully this next dose of vincristine will be gentle on the hair follicles.

Good news all around this morning.

Update: I don't have the exact numbers (phone call while driving), but Mollie's WBC is 4.3 so her ANC is probably up around 2000; Hgb is ~11 and platelets are >200,000. So, good news on the counts- her bone marrow seems to be back to work.

11.05.2009



The weather was lovely today, so I ignored the huge mess that is our house and the 750 things on my to do list that has been growing for several weeks and took the girls to the park. We'll still be eating a delicious dinner tonight thanks to the families of Mollie's classmates and Vera.

Tomorrow, it's back to MCG for Mollie's clinic visit. I'm hoping for a short visit (< 2 hours), but I do have a lot of questions...

11.04.2009

We're free today

Mollie had a great afternoon yesterday. She played with Lucy outside and then helped my mom bake cupcakes for my dad's birthday. We celebrated both Mollie's discharge and my dad's birthday by going out to dinner. What better time to go out than when Mollie's ANC is really high? She ate and played some more and didn't want to go to bed.

This morning she had a bubble bath! She's feeling good for the most part. She is having some bone pain from the neupogen shots and is very concerned about her hair. I'm not sure how to handle this one. It's such an outward sign of her cancer and she just wants to be treated like a normal kid. Guess we'll just take it one day at a time. She will definitely be out of school the rest of this week and we haven't yet figured out what the long term plan is for school. First, things first.

Matt and I got to decompress a little last night. Tears of joy and thankfulness, fear and loss. Today is surreal- we have been in crisis mode for two weeks, and then all of the sudden we are home, Matt is back at work, Mollie and Lucy are playing and arguing, there's housework to be done...

11.03.2009

Mollie Is Home!!

Yay! Yay! Yay!

Thank you to everyone for the moral support, gifts, notes, etc. We can feel the good thoughts and it really helped to sustain all of us. We just got a big package from Mollie's school with some delicious bread and gift certificates for food. That will be a huge help this week as we all recover from this long hospital stay.

Mollie will be seen in clinic on Friday for counts/follow-up and she is going to resume chemo at a 50% dose today. If all goes well Friday, she will be in clinic next week for her regularly scheduled monthly IV vincristine and steroids. It would have been nice to get a little break, but we know how important it is for her to get her chemo regularly.

This post is unfinished but Mollie wants me to "do something" with her.... back for more later.

11.02.2009

Hospital: Day #13

Pushing two weeks inpatient! Mollie is doing very well and is very, very tired of being here. Her WBC is 16,900. Her ANC is definitely over 5000 so they are stopping the neupogen shots! She is very lethargic, somewhat grouchy, and not eating much. She's also complaining of stomach pain. Matt and I think most of this is due to cabin fever and side effects of the drugs she's still on. It seems like there is little benefit to keeping her on all the antibiotics/antifungal so we will bring this up during rounds this am.

At the moment, she is working on school work with Ms. Pam, the hospital school teacher. She's in a good mood and for the moment has forgotten that her tummy hurts.

The nurse just came in from rounds and said they are going to stop all the IV meds: the Meropenem, caspofungin, and vancomycin. She got her last dose of Tamiflu on Sat. and will finish up the Zithromax today. They may keep her on a once per day oral antibiotic (like augmentin) and also give her some prevacid or zantac to help with the stomach issues. And then keep her 24 hours for observation. All of this still needs to be confirmed (I haven't yet seen the attending for this week, Dr. McD) and I also want to ask about the breathing treatments.

3:30 PM Update: Mollie got a hep-lock around lunchtime and she's been walking around the hospital ever since. So, so glad to finally get out of the room! All of her IV meds are stopped and she just had her augmentin (oral). She'll get her final dose of Zithromax shortly and she will continue the every 4 hour breathing treatments. She's been crafting, doing art, playing with some toys, and still not eating.


11.01.2009

Hospital: Day #12

Yesterday was tough emotionally because, although we are very thankful for this hospital, we can't wait to leave. Mollie BORED. It's like being in jail- she can't leave the room and her friends can't come visit. Trying to keep her spirits up is the hardest thing right now. It bites that we missed Halloween. We haven't been together as a family in almost two weeks. Lucy doesn't know what is going on and really misses Mollie.

To add insult to injury, her hair is starting to fall out in big clumps- probably from her last treatment with vincristine. It is not unusual for kids to have some hair loss in LTM, particularly after a year in treatment. Most of the time it is just a general thinning, but occasionally they go totally bald. With the amount of hair that Mollie is losing, I'm worried it's the latter, but I know we can deal with it.

The important thing is that she's still kickin' butt! Her WBC is 6300 today (ANC not in, but probably around 3000) and her lungs are starting to sound better. No fevers in 2 days. She's very weak from all the medications and just being in here so long, and her appetite is totally gone (although she's been munching on some Halloween candy). But, we just found out she is no longer on isolation! She still can't have children under 18 as visitors (hospital-wide policy), but she can finally leave the room!

9 PM Update: Mollie had a good day today- she had a visit from her teacher, Mrs. S, and then went out to the lobby for a visit with Lucy! It was very sweet to see them together after so long apart. They were blowing bubbles and Mollie even attempted to pull Lucy in the wagon while still attached to her IV. Tonight, Mollie wound up with abdominal pain and GI issues. When I left the hospital, she was sleeping but still complaining of pain. Given all the medications and the lack of exercise and poor diet, I'm not surprised she's having digestive tract problems. I think they will back off of some of the medications tomorrow. A good night's sleep would really do her (and all of us) some good, but with breathing treatments every four hours round the clock and continuous IV fluids (and trips to the bathroom), it won't happen. I'm hoping that tonight is relatively restful for Matt and Mollie.

10.31.2009

Hospital: Day #11

10/31 7:30am

Mollie had a great night last night. She endured the respiratory therapy at midnight, 4am and just now with no problems, and now can get the plunger all the way to the top of her incentive spirometer. Dr V just mentioned to me that he was encouraged by the sound of her lungs and that he thought she had turned a corner. It was nice to hear that.

Also, she had no fever last night and her WBC is 1.9 today (more than double what it was yesterday).

He also mentioned that she probably had the pneumonia all along, but without any white cells attacking the infection it didnt show up very well. Now that she is producing the white cells she should have a lot of congestion to expel by coughing, etc - so we will really focus on the breathing treatments and therapy. It is nice to have something tangible to concentrate on after days of relative uncertainty.

Happy Halloween everyone!

10.30.2009

Hospital: Day #10




Things are looking better this AM. Mollie did spike a fever last night (39.2) but a) was not as high as previous nights and b) came down pretty quickly to normal (37). Her ANC is up around 900 and her breathing is greatly improved.

We haven't heard the results of the CT yet and won't here about the nasal swabs for some time (they sent them to an outside lab).

Matt and I both are annoyed that the hospital seems to undervalue nutrition and hygiene as part of "medical care." The food in the hospital is crap, and Mollie has been eating less and less each day. We have asked several times for proteins shake and multi-vitamins and finally go the OK to give them to her yesterday. And nobody seems concerned that she hasn't bathed or brushed her teeth (We finally got her to do both!) So, we're pushing that pretty hard right now.

Mollie had "reverse" trick or treating this morning; she dressed up as a bat and got 3 bags of loot! All the staff were dressed up and they came by her room and made her say "trick or treat" before heaping treats in her bucket. She got her neupogen shot delivered by a nursing student- that was annoying. It took forever and she was screaming. I believe in students and understand this is a teaching hospital, but they shouldn't practice on a child who has been here for 10 days!

Mollie is in a good mood, energetic, afebrile, and generally happy. We would like to think she's turned a corner... but we know better than to make that declaration yet!

Mollie has been having a great day (other than not eating much). Still afebrile and we're working on clearing those lungs. The CT showed that she does not have necrotizing pneumonia (which is very dangerous), just regular pneumonia. That is probably what is causing the fevers to spike so with the respiratory therapy we're hoping to clear out the gunk and fluid and get the fevers to stop. Dr. Vega says we'll definitely be here over the weekend and once she remains afebrile, ANC shoots up (BTW, her WBC count was 900 today but ANC was only 342), and her lungs sound better, she can go home. They will continue with the neupogen shots until her ANC is around 5000. The shots sting, even with the lidocaine cream, but she is usually completely recovered a minute later. The anticipation is the worst part and she always knows when the shots are coming because they come in and put the Emla cream on her leg 15 minutes before giving the shot.

11 PM Update: I just got home from the hospital and Mollie is goofy and energetic and still fever-free! She's been eating plenty of candy and was so happy with all the cool Halloween stuff that arrived in the mail today. Her hospital room looks like Halloween-land! If I think of it, I'll do a video tour of our home away from home tomorrow.

10.29.2009

Hospital: Day #9

10/29 9 am

Not much change from yesterday around this time. Mollie's fever was up and down again all night last night, and hit 40.1 C at 6:45 this morning. I wish there was better news on that front.

Her counts are continuing slowly to rebound. WBC is 0.8 today, HgB is 9.7 and platelets are 76. The neupogen and RBC transfusion yesterday obviously helped.

No news on the ANC yet. Mollie has been doing really well with her spirometer. This instrument helps make sure she is inflating her lungs well. It's kind of like a big straw that you inhale through and she was very scared of it at first. She just had a chest X-ray and there is a "fluffy" area in her lower left lung, so they are also going to start CPT and some albuterol breathing treatments to help clear that area. She's going to hate it.

Ms. Pam came in and did some school work with her, then we played a goofy game of I Spy that got her laughing (and coughing- helping to clear those lungs), and now she's watching a movie. She just got her neupogen shot- boy did that piss her off. The way she was yelling you would never know she was sick.

At this point, we are still just treating the symptoms, trying to prevent a secondary infection, and hoping the flu will quickly run its course. It is frustrating and concerning. I wish there were signs of definite improvement.

7:45 PM We had a consult with Dr. Murray from Infectious Diseases today. He ordered a CT and nasal swab for Mollie. We don't have the results yet and probably won't until tomorrow. He also wanted to change one of Mollie's antibiotics (to minimize resistance) and start her on an antifungal. He agrees that this doesn't look like a fungal co-infection, so this is empiric treatment. Mollie endured a bunch more tests and treatments today: Chest X-ray, Chest CT, 2 (soon to be 3) breathing treatments, 2 nasal swabs, and a neupogen shot. Not to mention all the antibiotics and being on an IV continuously. Despite that, she is in good spirits right now- singing songs and drawing pictures.

Michelle- yes! she can have candy. They are doing "reverse" trick-or-treating tomorrow- all the staff will come by Mollie's room and bring the candy to her! I hope she's in the mood for it.

10.28.2009

Hospital: Day #8

Getting my update in early today-- Matt reports that Mollie's temp went up and down all night long, but WBCs are up to 0.7 with an ANC of 550 (above the 500 mark- yay!) and her lungs sound good according to Dr. Vega.

Today, she will get a dressing change and they will also change the needle in her port. None of us are looking forward to that, but I know she can handle it. Plus, she'll get another neupogen shot. This definitely calls for something from the present box- it's almost empty after all she's been through recently.

Also on the menu for today are a bunch of phone calls (& probably visits) to our other doctors. Lucy and I are both considered "high risk" for H1N1. My OB just got doses of the vaccine on Monday, so she will probably recommend I get mine and start me on Tamiflu. Lucy's ped doesn't have the vaccine, but may start her on Tamiflu as well and send us on a wild goose chase to find vaccine for her (she is supposed to get the shot, not the mist b/c it is live attenuated). And then Matt will also have to talk to his GP. This is when I wish "family-centered care" actually meant medical care for the whole family. We've been getting little sleep as it is, and now we have to run around and deal with this. I think I might be feeling symptomatic already (although I might just be tired).

Mollie will also get a red blood cell transfusion today. Now that they know the cause of her illness, they will give her the blood to improve/maintain her oxygen transport and just generally to help her feel better. Her hemoglobin has been low for over a week now, so this should really help. At the moment, she is very happy. She is disconnected from everything- no tubes, monitors, needles, etc. and her temperature is only slightly elevated.

Worst port access ever. We had to hold down her arms and legs and they stuck her 3 times! But she's doing better now. Unfortunately the neupogen shot is coming in a few minutes. Fever is still down and she's coloring and working on some school work. We tracked down Tamiflu for the rest of the family and Lucy and I are going to get our H1N1 shots this afternoon.

10.27.2009

Hospital: Day #7

Well, things are changing one hour to the next. Last night, Mollie's fever was alarmingly high and would not come down with Tylenol and Motrin. However, around 3:45am it did start coming down to normal (see Matt's comments on the post from yesterday, below). It stayed down until about 11:30 am and then spiked again- Mollie was not looking well- her lips turned blue and she had uncontrollable shivering. She's perked up a little now.

Her labs came back this morning and her WBC count is up a little and her ANC is 330. So that is a good bit of news. They also did a CRP test, to determine whether she was having an acute inflammatory response and it came back a little elevated, but not alarmingly so. The medical team is leaning toward a viral cause for the fevers and they have moved us into an isolation room because they are testing for flu and starting Tamiflu. Switching antibiotics again (stop clinda, back to vancomycin).

More waiting and looking for that ANC to come up. We're doing our best to keep her spirits up and her body strong.

Mollie did a super duper job with her neupogen shot and nasal aspirate today. She was really scared of both and she was also still febrile and feeling terrible. The nasal aspirate involved sticking a tube down her nose to suck out a sample to analyze for flu. The respiratory therapist who did it was wonderful and quick and it was over before we knew it.

A lot of people are asking what to send Mollie- right now she's really into books, stickers, any kind of arts and crafts projects. She also loves getting clothes for her baby dolls and build-a-bear and new games for her Leapster. Today we'll "redecorate" since we moved rooms and we're hoping Ms. Kym will stop by with some projects sometime when Mollie is not febrile!

Update @ 4:30 pm: Mollie spiked another fever that has just come down a little and she has perked up a lot! She actually let me wash her hair (finally!) She's making flower fairies and just ate a turkey sandwich, a bag of chips, and some Halloween candy. Dr. V just came in and said that her chest x-ray earlier today showed that she had some fluid in the lower lobe of her left lung, but the rest of her chest is very clear and her oxygen saturation is 100%. This finding is consistent with a virus (flu), so he thinks the Tamiflu and increasing counts will get this to resolve. He also said this may explain the high fevers and her antibiotic coverage is appropriate for this situation. He's hoping her ANC will be over 1000 within 3 days.

Mollie finally looked at her video postcard from her cousin William- she loved it! So if you want to send a video message, just e mail me: sarahdmertz at yahoo dot com

Okay, so Mollie's flu test just came back positive. Most likely it is the novel flu (just given the way the flu season is going). Honestly, it's scary, but I actually feel more relieved that we know what is causing the fevers and we are treating it the way we should. Dr. J thinks that she may have acquired the flu since she's been in the hospital and that she actually had sinusitis or a bacterial infection when we came in to the ER last Tues.

I think Mollie had a good day today- she looks better than she did yesterday, in my opinion. She spiked another fever tonight; hopefully it will come down before too long and she will be able to rest a bit better tonight. She's a fighter. We're counting on that and some neupogen and Tamiflu to help her kick butt on the flu. And cancer.

10.26.2009

Hospital: Day #6

10/26 830am (from Matt)

Mollie had a very difficult night last night. Her fever ran all the way up to 39.4 C just after midnight, and it took three doses of tylenol, at 1230, 3 and 430 am to turn it back down to 37.9 C, as of 6am. At 8am it was still down, to 37.4 C. This is the only small bit of good news at this point.

Dr V (the new attending) came by earlier and Mollie's counts are slightly down from yesterday. She still has very low white counts, no measurable ANC, and is neutropenic. Several versions of plan B are under consideration right now.

They may begin treating Mollie for a fungal infection. We have been told that this involves some significant side effects, but have not gotten into specifics although Sarah researched it and has a good idea. Mollie may get neupogen shots to boost her white cell count - she has had these before and responded well (aside from loathing the shot itself). She may get a CT scan to further evaluate her sinuses and clarify the possibility of whether this is a sinusitis of some sort. She may be tested for the flu, although this would require that she be moved outside the forced airflow isolation ward and therefore isnt likely due to her neutropenic condition. She may receive an IgG infusion as we mentioned before. She may receive a blood transfusion to boost her red cell count. They may for now simply continue status quo (clindamycin and cefepime antibiotics), in the hopes that whatever this is resolves that way. We will know soon enough what seems to be the best course to follow and get busy following it.

For her part, Mollie is fighting a courageous battle against something that is nasty as can be. Whatever this infection is has withstood 6 days and counting of powerful antibiotics. Mollie understands very well what is going on and is willing to do whatever is asked of her. She takes medicine without protest, allows the doctors and nurses to examine her, take her blood pressure and temp etc, and her only complaint has been that she is bored (surprise). We are confident that despite the lack of positive news today that Mollie has the will and determination to beat whatever is attacking her and get the heck out of here. It just may take some time.

Update @ 10 am (Sarah)

Mollie is in good spirits this morning. She is painting wooden figurines from Michelle and wearing a locket with a photo of Lucy in it. We are hoping they will let us bring Lucy in here for a visit- it would be nice to have our whole family in the same room for a few minutes! Mollie's diet has been pretty good- this morning she ate pancakes, 2 cups of OJ, cereal with milk, and half a bagel with cream cheese! She's not having any symptoms other than the fevers and cough.

The plan, according to Dr. V is to give the neupogen (GCSF) shots, starting today, to help get those counts up. He has reassured us that it is not unusual for children run unexplained high fevers when their counts stay low. The cultures (bacterial and fungal) continue to be negative and he thinks the cough is due to post-nasal drip. So, it's more of the watchful waiting.

Matt and I are both scared and I think last night was a very low point for both of us. We are very thankful to Michelle and Marv for helping out so much with Lucy and we're glad that Matt's dad is coming sometime today to help out. Mollie beat both of us at a game of Trouble before bed so we're looking for a rematch sometime today!

Meant to post photos of the haunted house, but I forgot my camera!

2 PM (Sarah)

Fever spiked this morning around 10:30- she's still febrile and Tylenol is not helping much. She took her neupogen shot like a pro though. Dr. V says that once the ANC gets up around 400-500 that we should see a dramatic improvement. Despite the fever, we have been doing lots of painting and she beat me at Crazy 8s and Go Fish. Delete

10.25.2009

Hospital: Day #5

Well, the news today is neutral or good, depending on how you look at it. I am thinking positive...

Mollie's counts are up a little bit (not statistically different than yesterday, but ALL the numbers are up slightly). WBC = 0.4 (no appreciable ANC), Hgb 8.4, and PLT 76. So, the plan is to do continue on the same course. If we can't get the fevers to stop, then they will probably start considering that this might be a fungal infection. That could be very serious, so we're really hoping those numbers come up and the fever doesn't!

My goal for the day is to wash Mollie's hair. She is very, very protective of her port and won't consider letting us hep lock it and tape it up so she can bathe. The hair washing will probably take place in the sink- but I think it will make her feel better!

Update: Mollie spiked a very high fever around noon today. It came down with Tylenol and she has been slightly above her normal temp all day. We had a nice visit from her teacher, Mrs. S. It was a good distraction for both of us and Mollie perked up and was very talkative after getting the tylenol. She has spent the rest of the afternoon watching netflix on my laptop. In my opinion, she's just not feeling as well today as she was yesterday, although she says she's just more bored. And I still haven't been able to wash her hair (although the boo-eauty salon is a great idea).

10.24.2009

Hospital: Day #4

10-24 7:45am Fever back again, 38.4 C. Maybe the silver lining is that she held it off longer this time around. Anyway, will wait and see what her counts are this morning.

Fever is back down to normal (9:30 AM). Counts are going the wrong way! Down again today. Just had a discussion with Dr. B. We are switching Mollie to clindamycin, although I think Dr. B thinks this is viral and has a longer course (5-7 days). The clindamycin is because it still looks like Mollie might have some sinusitis and the clinda is better for that than the vanc, but still provides broad spectrum coverage. She thinks Mollie looks good, doesn't want to do a flu test because if they do it, they have to move Mollie out of the oncology hallway and into the main hall (without the benefit of the positive pressure rooms). Also, Mollie got her regular dose of Septra yesterday, which can suppress counts, so we are now holding that as well as the chemo. So, we wait and hope the counts start going up. We are all encouraged that there is a longer time between fevers. I wish there was something else we could do to bring the counts up!

Mollie seems well. I stopped and got her a bagel with cream cheese on the way to the hospital this morning and she had the biggest smile and scarfed it down! And she had already eaten her breakfast. Right now she's up drawing on the white board in her room and we're tied after two games of Pretty Pretty Princess. We've been working a little each day on making a haunted house out of a cardboard box, so we'll probably work on that a little more today and just try to keep busy.

Thanks everyone for all the encouragement, cards, etc. It really helps keep our spirits up!

10.23.2009

Hospital: Day #3

10.23 7am from Matt:

Dr. S just came by. Mollie's WBC are the same as yesterday (0.5), and her other measurements (HgB, Hct and platelets) are roughly the same as well. No ANC yet (I hate it when they come in here without it). She had tylenol at 9p last night and had slept well since then. Cefepime at midnight, then normal temps at 1A and 4am, vancomycin around 5am. He also mentioned that her IgG levels were low, but not so low that they would need to transfuse her. I was happy to hear that, Mollie had an infusion to bolster her IgG level during her December stay and had a reaction to it - one of the scariest moments we have had during her treatment.
So, at this point we are at 10 hours and counting with no fever. Need to get to at least 24 before we go anywhere.

Update (1:30 pm) and FAQs:

We missed the doctors rounds this morning because Matt and I were doing the "Lucy exchange" downstairs. Mollie reported that Dr. B told her to keep blowing her nose. I'm sure if there was a change in "the plan", Dr. B will come back and let us know.

Mollie's temp was 37.8 @ noon; now she feels warm to me so I wouldn't be surprised if it is higher.. She just had a session with the school teacher, Ms. Pam. They did a lot of the make up work that her teacher sent last week and she enjoyed being out of the room and getting attention from someone else! Mollie didn't eat any of her lunch (don't blame her- it looked unappetizing) and doesn't want the bagel I got her (they didn't have plain, ugh) so she's grouchy and hungry. She only wants french bread and cheese or a bagel from Einsteins or vanilla yogurt. I'm going to try to get her to eat some cereal.

A few people have asked about blood counts and ANC. Every time they draw "labs" the blood is sent for a CBC (complete blood count). This measures the number of red blood cells (RBC), white blood cells (WBC) and platelets in the blood sample. Neutrophils are a type of white blood cell that is the body's main infection fighter, but only a percentage of white blood cells are neutrophils. The ANC (absolute neutrophil count) gives the total number of neutrophils and is a measure of infection-fighting ability. To get the ANC, they have to do a differential count, where they look at all the white blood cells and then calculate the percentage that are neutrophils, lymphocytes, monocytes, etc. They multiply the total white cell count by the % neutrophils to get the ANC. An ANC below 500 is considered neutropenic and requires special precautions to reduce the chance of infections.

Another question is why the temperatures are reported in Celsius. I think most hospitals now use the metric system exclusively. Pediatric medications are usually dosed in mg/kg body weight, so for consistency, I think they measure everything using the metric system.

Julie, we don't have a printer here, but Matt and I are switching shifts at least 2x per day so we can print things from home and bring them here.

Update @ 4:30 pm: The fever continues (38.4 @3:15). She got some tylenol about an hour ago, so hopefully that will bring the temp back down. Dr. B says keep waiting- she may have a virus that won't respond to antibiotics and just has to run its course.

Mollie is in a good mood though- she's been using the nurse-call button as a microphone!

10.22.2009

Hospital: Day #2



Updates from Matt

10/22 1:30am

Fever is back (38.4 C). Mollie has been given Tylenol to knock it back, and they will be switching the antibiotic regimen to Vancomycin as soon as the pharmacy can get it up here. Mollie has had this medicine before, last year in December when she had the long hospital stay. I am optomistic that this will work but concerned that her fever has persisted this long and that the docs are bringing out the heavy hitter. Despite all of this however she is in a good mood and is resting well in between wakeups.


10/22 7:30am
The resident, Dr. S, just came by. Mollie's ANC is up to 126 and her cultures are still negative, both of which are very good pieces of news. The vancomycin drip is going now, and as of 3:15 her fever had subsided (Tylenol helps). So far so good.


Back at home... Lucy isn't feeling too well either. She keeps giving lovely hugs, which would be very sweet except that you come away from them with snot all over you. This is especially unfortunate for me since I really only have one pair of maternity pants that fit comfortably. And while I'm complaining, I bought a bunch of groceries the day Mollie went into the hospital and was planning to make at least 5 or 6 different meals to freeze. Of course, I haven't had the opportunity to cook anything, so all the veggies are starting to go bad. I guess I just needed to vent about the little things.

I sure hope both of my kids feel better soon!

Update from the hospital, 2 PM: Mollie spiked a fever again, 38.5. They just drew blood to check her IgG levels, cultures are still negative. She is resting in bed now, but two therapy dogs just came to visit and that got her to smile! One of them bowed down to her and danced and the other one hopped up into her bed! Her school sent her some lovely pink flowers- that got her smiling too! And she just got a huge Pooh and Piglet balloon from my parents- another big smile!

Update @9:45pm from Matt: Fever is back again, now at 38.2 C and headed the wrong way (was 38.1 an hour ago). Mollie got some tylenol and has fallen asleep. Plan for tonight is the same as last night, lab cultures around 1:30 and vancomycin drip now, with cefepime around midnight.
Mollie and I watched part of an old Don Knotts movie, "The Ghost and Mr. Chicken", on DVD before she went to bed. It used to come on TV every year around Halloween and I was telling Mollie how it was one of my favorite movies when I was her age. She liked when he would do his karate moves but for the most part I think there is a generation gap there!

10.21.2009

In the hospital: Day #1

Well, the news this morning is good: no fever! Mollie's labs came back and her white cell count is up a little (still no ANC, but I would guess ~200 ish) and her blood and urine cultures have come back negative. It is nice to start the day on a positive note. We've only seen the resident on the floor, not the oncology team. Dr. B is on service and she is very conservative (medically)- I'm interested to see what she has to say.

The hospital is full; normally neutropenic patients would be placed in rooms "behind the glass," in a hallway that has positive pressure rooms with a separate airflow, but none of those rooms are available. The last time we were in the hospital, I think we were the only ones in that hall.

Mollie is sleeping soundly, at least until the "team" comes in to check her out.

Update from Matt : Mollie is awake and in a good mood, Ms. Kym brought a huge bag of toys and I have been defeated twice in Pretty Pretty Princess. Ate some Froot Loops for breakfast and eating lunch now. Dr. B doesnt think it is a UTI after all, at this point the cefepime seems to be addressing whatever the issue is and we will be waiting for her counts to rebound.
Tmp 37.8 C, bp 130/59.

Update from Sarah (3:30 PM): Fever is back up to 101. Lots of crafty supplies were just delivered so Mollie is keeping herself busy doing some cool artwork. We were going to make a haunted house out of a cardboard box, but I couldn't find any black paint. Have to save that project for tomorrow.

8:30 PM Update from Sarah: Mollie's fever came down with Tylenol and the course of treatment hasn't changed- watch and wait. They may give her some claritin and will consider switching antibiotics if the fever spikes again. Mollie is in great spirits- we did a lot of artwork, played some games, and she spent a while playing games online (PBS Kids and Nick Jr.). She shas a good appetite and wanted to go for a walk (but couldn't because of the low blood counts). I hope she has a good night tonight and tomorrow continues to improve.

10.20.2009

Back to the ER

Mollie came home from school with a slight fever... and it went up. So, we are back in the ER waiting to see a doctor. I will update when we know anything. Please send positive thoughts/prayers that her counts are okay and we don't have to stay!

Update #1: We are still waiting on counts, but the doc says it looks like she will be admitted. Mollie is really, really bummed out. She keeps asking how much school she will have to miss and making up little songs about how the doctors are good but she doesn't like coming here. I'm worried about my sweet little girl.

Update #2: It looks like she has a UTI and will definitely be getting admitted. She is sleeping on a cot in triage right now and waiting to be transferred upstairs. She already got a dose of cefepime (antibiotic). Hopefully that will start working right away. It's kind of lonely here and I'm not looking forward to sleeping on the uncomfortable couch in the hospital room. But, maybe we've finally gotten the answer to what's been making Mollie feel so puny (as nurse Kate would say) for the last week or so.

Update #3: We are now "settled" in to the room. Mollie's ANC is very low (I still don't have a number, but her white count is 400 and the ANC is only a fraction of that). The medical team is pretty sure this is a urinary tract infection and are treating it as such for the moment. They are doing blood and urine cultures so we might know something more tomorrow. They will not release her until she has been fever-free for 24 hours and her ANC is trending up. At the minimum. My guess is that they will hold her chemo so that her counts start to rebound. Cefepime, do your stuff!!

Thoughts from me at 3 AM: Man, this sucks! Matt was supposed to go out of town this weekend to run his first marathon, and it looks like Mollie is going to be in here for at least a few days. Plus, with the "flu policy," we aren't going to be able to bring Lucy to the hospital. That bites on so many levels. It is going to be extremely hard logistically, because we don't have anyone else to care for Lucy. And even worse, Mollie and Lucy are going to miss each other!

10.19.2009

A Little Better

Mollie had a better day today. She went to school, but was still not up to 100%. No surprise since her last dose of steroids was last night. This was just a really tough bout with steroids. It was hard for Matt and I to tell whether Mollie was feeling bad from the cough/sinus infection, steroids, or both. The cough is still hanging on, but she is definitely in a better mood than last week.

Hopefully, she will continue to feel better, despite the cold weather, and will be ready for her flu shot next week. Lucy was supposed to get her flu shot this week, but she woke up with a fever today! We think it is from teething, or maybe she's just getting a cold. I took her to the pediatrician to get checked out and I wanted to run out of the building because of all the sick people in the waiting room! I hope we didn't catch anything while we were there.

10.16.2009

Ugh.

Yesterday was one of the worst days Mollie has had in a long time. She feels crummy from the steroids, crummy from her cough/infection, and the weather is cold and overcast. She ended up sleeping most of the day. We went out to run some errands and I tried to entice her into going to the library, the toy store, or just to lunch, but she wouldn't have any of it. She just wanted to go home. Later in the day she got angry at me for not taking her to her Daisy scouts meeting (even though she was sound asleep during the whole time the meeting was taking place). I hadn't even mentioned the meeting and I was really surprised she remembered it.

She's very teary, emotional, and tired. I have a feeling today will be more of the same- it's day #3 of 5 for the steroids. It's hard to see Mollie feeling so bad and even harder to try to deal with a very energetic, happy toddler at the same time!

10.14.2009

Clinic Update

Mollie got her monthly IV vincristine today and has started her steroid pulse. She did fine with the port access and we were actually done by noon (a minor miracle). But... we still had to get prescriptions filled afterwards. These clinic days are LONG.

Mollie's ANC (neutrophil count) is much lower than it was a few days ago (1100), but she is not neutropenic. Neutrophils are the infection-fighting white blood cells. This lower count means we need to be extra careful about infections because if she does get one, she will likely become neutropenic and may end up in the hospital. She's still very congested and doesn't have a lot of energy.

We will probably hold her out of school for the rest of the week; we need to get her feeling better!

10.13.2009

Another Day, Another Clinic Visit

Not today, thank goodness. Mollie stayed home from school today because we felt she needed a little more recovery time before her chemo tomorrow. She had a pretty good day, but she missed school. Her teacher sent home some activities that she worked on; we did some jigsaw puzzles and ran some errands, but I could tell she missed going to school.

Tomorrow morning we head back to clinic for her chemo and she begins her 5-day steroid pulse. Those dreaded steroids should also help with the sinus inflammation.

I'll update from the clinic tomorrow.

In other news, I got a phone call from the former director of the pediatric ER about the medication mix up on Saturday. He has forwarded this information to the new director (I didn't realize there had been a change) and she is supposed to follow up with me this week and we will file a formal complaint. I'm still angry about the situation. That nurse didn't follow protocol; if she had, she would have realized that Mollie was not supposed to get Benadryl, and there would have been no problem. The nurses in clinic ask Mollie her name and birthdate every time they do anything; then, before they give her any medication, they ask me if she has any allergies. Every time. They also told me that they have one patient who IS allergic to Benadryl...

10.12.2009

Again with the fever!

Not too happy about being hooked up to an IV again!


Waiting in clinic.

Mollie spiked a fever last night at 3 AM, so we knew we were in for a clinic visit today. She was also feeling dizzy and "wobbly" (although she was laying down so I'm not sure what she meant by that). I gave her Tylenol and Zofran; it got her fever down and let her go back to sleep. Of course, the light in the kitchen burnt out and I slammed my finger in the cabinet, plus I had the clinic visit on my mind, so I had a hard time going back to sleep!

We spent the day in clinic and the NP thinks Mollie has a sinus infection or inflammation. She received another dose of rocephin through her port (another needle stick, with one more to look forward to on Weds.) and is starting a two week course of oral antibiotics. We're hoping this clears up all the yuckies, including the bouts of dizziness.

We had a lovely day yesterday, though. We took a family walk at a local park in the nice fall weather. Mollie seemed to really enjoy the sunshine and being outdoors. Today is a different story- it's been pouring for 8 hours straight. I'm glad we spent today in clinic and not yesterday!

10.11.2009

Drumroll, please....

The winners of the Light the Night T-shirts are:

Jessica Roberts
Kathy Mertz
Gail Franssen
Justin Shimek
Sally and Darryl Phillips
Anita Roberts

Be looking for your T-shirt in the mail!

We're going to have to have another giveaway soon... the random name drawing was very exciting for Mollie and Lucy!

10.10.2009

Fever (Now Updated)

Well, I am writing this post from the ER. Mollie awoke with a fever and cough this morning; we were directed here since the clinic isn't open on the weekends. She is receiving rocephin (antibiotic) right now, and we are waiting on a CBC. As long as her counts are good, she will not be admitted.

We haven't been to the ER in a while and now I am reminded why I hate it. The rooms are uncomfortable and it is really, really busy today. Once we actually got into a room, the first thing they did was make a mistake! A nurse walked in and gave Mollie a dose of Benedryl... instead of Tylenol! It happened so fast, I didn't even realize it until after she swallowed it. Now, I feel like I need to stand guard a the door and ask a million questions before anyone comes in. And, of course, I've made several phone calls to file complaints.

It was also a very difficult port access. The two nurses who did it were wonderful, but they couldn't get a blood flash on the first try, when Mollie was sitting in a chair. They wanted her to lay on the exam table to try a second time. Mollie is not used to this and *freaked out*. But, they got it on the second try and once everything was in place, Mollie said she didn't even feel them put the needle in!

Right now, she's watching Snow White, coloring, and waiting for the rocephin IV to finish. We all just want to go home. We are hoping and praying that Mollie's counts come back fine.

So, the update. Mollie's ANC is over 2000 (2160), which is good. All the docs are thinking this is some kind of upper respiratory viral infection (pretty much like the last 2 times she has had fever). She's home playing with some new (pink) Legos now. She is in good spirits and probably just needs a little time to rest and recuperate. The "plan" is for us to check with oncology on Monday and if she seems better, we will go in on Weds. as planned for her monthly chemo.

Will draw the winners of the t-shirts tomorrow.

10.08.2009

Special Person

Mollie was the "special person of the day" for her class yesterday. She got to do a couple of special things, including show and tell. I was surprised that she wanted to bring in a picture of herself with no hair and a picture of Lucy and her together. She brought a small album of photos from January and February, when her hair was just starting to grow back in. She said her friends ooohed and awwwed at the pictures and then she said, "Wow, I am a hero!"

Mollie wasn't feeling well last night or this morning, but she seems great this afternoon. The star lab, a mobile planetarium, was at her school today. Sounds like she really enjoyed learning about constellations. She has a Daisy scout event tomorrow: picking up trash in a local nature park. She's looking forward to wearing her boots and helping the Earth.

We got Boo'd yesterday! That's where a neighbor leaves a little Halloween treat bag on your porch and you have to make treat bags for two other neighbors until the whole neighborhood has been Boo'd. Kinda cheesy, but Mollie really loved making and delivering the treat bags to other neighbors this afternoon.

Don't forget to leave a comment on yesterday's post by Friday night for a chance to win a Light the Night T-shirt!

10.05.2009

Thank You!


Last week I sent an e mail to the organizer of the Augusta Light the Night Walk saying that we were going to participate in the walk, but we wouldn't be doing any fundraising this year; we had too many other things to do and didn't have the time. But, I decided to put a link here on the website and on Facebook anyway.

Within 5 days, thanks to family and friends, some whom we haven't seen in over a decade, we raised $1100 in honor of Mollie!

The walk was a wonderful celebration of life and hope. White balloons were for survivors and red balloons were for supporters. Many teams carried gold balloons in memory of those who have died from this horrible disease. Mollie asked what the gold balloons were for and we explained. She seemed satisfied with a simple explanation, but it is always really hard talking about people dying from the same disease she has. Really hard.

Mollie walked just about the whole way- she rode in the wagon for the last little bit. Both girls had a lot of fun at the celebration before the walk- they jumped in the bounce house, got balloons from a clown, and Mollie got her face painted.

As a thank you, we have 6 T-shirts to give away. For a chance to win, leave a comment on this post by Friday, Oct. 9. I will pick winners on Sat. morning. Make sure I have your e mail address so I know how to contact you. Donors will be automatically entered.

10.03.2009

We're Walking Tonight!

Mollie had a good day at school yesterday, although she did stop by the nurses office. She was complaining that her leg hurt and it was making her "waddle" when she walked. The nurse (thank goodness!) told her to quack like a duck to go along with the waddle; she went on to have a good afternoon. Apparently, the leg didn't stop her from enjoying PE.

We're going to a birthday party this afternoon, and then the walk is tonight. It promises to be a fun day!
Happy Birthday Grandma Janet!

10.01.2009

Just go with it

Despite all the medications, Mollie was still feeling sick yesterday. But this morning, she woke feeling okay and ready to go to school. So off she went. It was also Lucy's first day in a nursery school program, so I was really looking forward to a couple of hours to myself.

Ha, ha, ha. Not so! The school nurse called and said that Mollie was extremely dizzy and pale. So, off I went to pick her up. At first, I was extremely concerned, but after thinking about what the causes might be (she may have a virus, an ear infection, and she's taking some really strong antibiotics) and seeing that Mollie didn't appear to be scared or in pain, I decided to just bring her home and let her nap for a while. She felt better after the nap, but she has been a little subdued ever since. It is so hard to determine what is serious and what isn't with Mollie. And she knows it, which makes it even harder, because she uses it against us.

She ended up perking up enough to want to go to her Daisy scouts meeting. She enjoyed the meeting and even played in the park afterward. She is pretty worn out now, so she'll be heading to bed early tonight and hoping for an uneventful day tomorrow.

In this crazy life of ours, we just don't know what the day is going to bring. It's hard to make plans, because we never know when we'll have to cancel. The weeks when we have the most activities scheduled are invariably the weeks that Mollie is not feeling well. We signed her up for a creek exploration program at a local nature park. It meets every other week and Mollie as not made it to one meeting yet! If it's not a clinic day, then she's been sick. It's frustrating for me because I paid for it and really want her to get the experience, but I know her health is the priority. I just want so much for her to have the "normal" childhood experiences.

We will be participating in the Light the Night Walk this weekend. Last year Mollie was on steroids and a lot of chemo, but she still walked the whole way! We hope (fingers crossed) that she will be feeling better for this year's walk. We'll also be bringing the wagon to tow Lucy- I'm sure she could walk to whole way but we need to keep her strapped in so she doesn't run off! Many of our friends from clinic will be there, and we are looking forward to walking with them. Please donate to the Leukemia & Lymphoma Society at our Team Homepage.

9.29.2009

Fever.... To Clinic... Then Home

Hangin' out in clinic...


Last night, Mollie seemed exhausted and mother's intuition told me she was coming down with something. We checked her temperature several times and no fever, but she went to bed without eating much dinner at all. She was coughing all night long and woke this morning complaining of aches and pains and vomiting. By the time we got to clinic, her temp was 102!

But, her ANC was 2500, so she didn't have to be admitted to the hospital. She received rocephin (an antibiotic) and fluids in clinic and they sent her home on an oral antibiotic.

So, Mollie is glad because she gets a pass on the flu shot until next month. They can't give it to her right after she's had a fever because it might mask a reaction, but they also have to time it so that it is exactly between steroid pulses, because the steroids suppress the immune response and reduce the effectiveness. I got my flu shot today, though.

Lots of rest and fluids for today. Probably, she will stay home from school tomorrow as well. She is definitely feeling better after the IV antibiotic, and is being her usual goofy self! Hopefully she will be back to 100% by Thursday so she can go to her Daisy Girl Scout meeting. Plus, we have fun plans for the weekend. Ah, yes, the spontaneity that cancer brings into our lives.

I'm so proud of how Mollie just rolls with everything. Things that would have been a HUGE deal to her 18 months ago- like having a giant needle stuck into her chest, being hooked up to an IV, having to wear a mask, sitting in a boring clinic room for hours- are just water under the bridge for her these days. She had a very smooth chemo-port access and needle removal. I remember when just taking the bandage and tape off caused her to go to hysterics. Now, she brings one of her special worry stones with her so she won't worry when she undergoes different procedures. It really works!

Infants' and Children's Tylenol Recall

McNeil is recalling Infants' and Children's liquid Tylenol products because of possible bacterial contamination (click here for the news article link).

To find out which products are affected by the recall, click here.

9.27.2009

Light the Night

We had a great weekend. Mollie spent ALL DAY playing at Bella's house on Saturday (and enjoyed every minute, I'm sure). And today, she was a great helper. Matt and I had some projects to do around the house, so Mollie helped out with a little painting. Better yet, she entertained Lucy, giving Matt and I had some uninterrupted time to get things done. She and Lucy also played some wiffle ball in the yard (with Matt, of course) and did lots of arts and crafts. Those two have a very tight bond. Both nights this weekend they had a slumber party. They started out in sleeping bags in Mollie's bedroom, but Lucy kept getting up and into things and keeping Mollie awake. So... they ended up sleeping in Lucy's tiny bedroom, Lucy in her crib, and Mollie on the floor in her sleeping bag. I didn't get a picture, but trust me, it was adorable.

Next Saturday is the Light the Night Walk for the Leukemia & Lymphoma Society. We just didn't have the time to organize like we did last year, but if you would like to join us for the walk, we would be honored. Please contact me and I will let you know where to meet us. There will be some pre-walk festivities- pizza, face painting, a bounce house, etc.

Here is the link to Team Marching for Mollie for those who would like to donate or join with us in walking.

9.24.2009

Teeny Tiny Turle


Well, the dry, cooler weather has disappeared and it has been hot and humid around here. It rained pretty hard last night and Lucy and I found this baby turtle right by the porch this morning. It looked a little bedraggled, like it might have been washed into the yard by the storm.

We kept corralled all day (don't worry, it was very comfy and shaded) so that Mollie could see it when she got home from school. She thought it was adorable and had fun watching it for a while this afternoon. Then she released it into the bushes... hopefully he'll find a nice safe place to hide!

Mollie has been experiencing nausea the last few mornings, but other than that, she seems to have plenty of energy and is feeling great. Next up for her, medically, is a flu shot next week. She's not looking forward to it (who is?), but we will make sure she gets a surprise from the present box.

Which reminds me, we really have wonderful friends and family. We still have quite a few presents left in the box (Mollie gets to pick one each time she goes to clinic); many of these were sent last year shortly after Mollie's diagnosis (I first peaked into the packages and made sure we opened the ones that were specific sizes or seasonal). And there's been a steady flow throughout the year; besides chemo angels, Mollie gets regular packages from my friend Genevieve, who keeps Mollie well informed about fairies (I should write a whole separate post about all the wonderful fairy things Gen has sent), my aunt and uncle in Colorado (usually with good books and coloring items), and Sally's friend in California, who has been sending Mollie little pieces of her "Muffy and Hoppy" collection of stuffed animals with adorable little outfits and accessories. And that's just to name a few!!

We know how time consuming it can be to wrap up packages and get to the post office and send them. We sincerely thank each and every one of you! It is so precious to see the smile on Mollie's face when she gets something in the mail or a surprise from the present box!