12.30.2008

Bump

Well, LTM is delayed because Mollie's ANC is below the cutoff. By machine, her ANC was 11oo, but the manual count revealed that it was 650; the cutoff is 750. Her platelets and RBCs are in the normal range. The 10 days of antibiotics might have suppressed her ANC somewhat, or her bone marrow may just need a little more time to recover from DI.

So, we wait a week. Just a bump in the road, and a chance for Mollie to get a little stronger before starting more chemo. Mollie didn't even cry for her finger stick and she hardly complained about being NPO. In fact, when we got into the exam room she asked me to close the door so she couldn't see the snack area (it would make her too hungry).

We met a little girl named Molly today in the clinic. She was diagnosed with ALL a few weeks ago and was in the hospital at the same time as Mollie (before Christmas). She's just two years old and is going through the really intense chemo & steroids of Induction. Her parents have that "deer in the headlights" look that I'm sure we had too for a month or so after Mollie was diagnosed. I hope they ask us if they need help with anything- networking with other parents of cancer kids was one of the most helpful things for me.

12.29.2008

Feelin' Groovy


These arrived in the mail today and Mollie was sooooo excited. Jay and Diane also sent some buttons. And Mollie got 3 books about bravery and some buttons from my aunt Sunni and a letter from one of her chemo angels. We feel like it's still Christmas!

Mollie is feeling good. Today is her last day of clindamycin (antibiotic). We are all glad because it has been bugging her stomach a little and she hasn't felt like eating much.

The plan is for Mollie to start maintenance tomorrow: a spinal tap (methotrexate), IV vincristine, 5-day steroid pulse, and daily 6-mercaptopurine. It looks like a lot of chemo when I write it out, but it is much less than she has been getting.

12.26.2008

Merry Christmas



We hope everyone had peaceful, joy-filled holiday celebrations!

We had a lovely Christmas at home! Mollie and Lucy both enjoyed the decorations, festivities and gifts. Mollie claims her favorite gift was a giant stuffed Carebear from Ben and Jen, although she seems to enjoy all of her gifts. Her button collection is growing - she received some special buttons from two of my best friends, Lauren and Anita, and even more from her great-grandmother Mollie. GG Mollie gave her some buttons that belonged to her great, great grandmother Miss Eunice and also one off of her great-grandfather's Navy uniform.

Today.... we are off to the zoo.

12.22.2008

Clinic update

Mollie's ANC is 16,000 today. That's right. Three zeroes. That's because of the neupogen shots, but still, it's impressive.

Mollie is scheduled to begin long term maintenance (LTM) next week (Dec. 30) as long as her counts are above the cutoffs. Matt and I are totally exhausted, and we'll never stop worrying, but we are so glad to be where we are right now.

In other news, Mollie has been adopted by two chemo angels. From the chemo angels website: "Chemo Angels is a volunteer organization dedicated to adding a ray of sunshine to the lives of those undergoing IV chemo treatment." This program connects volunteer angels (people who have undergone chemo, family members of cancer patients/survivors, or just kind people) with cancer patients who are undergoing chemo. The angels send cards, letters, and little treats on a regular basis. Mollie has been so surprised by their special cards (with stickers!).

12.20.2008

Home Sweet Home

Okay, so home isn't exactly relaxing with a crawling baby and a four year old who doesn't "feel" sick but needs medication every 6 hours. But.... we're glad to be here!

Two women from our Church brought by a Christmas tree, a poinsettia, and some ornaments Friday afternoon, so it is starting to feel like Christmas. Mollie wanted to stay up all night to decorate the tree- she is so excited!!

She is feeling really well and her skin lesion looks much better (but I won't gross you out with the details).

Thanks to everyone for lifting us up during a very difficult hospital stay!

12.19.2008

Good News

This morning Mollie's ANC is 500 and she is going to be discharged. We can bring her home! Of course, she says she doesn't want to go because she doesn't want to have her central line de-accessed. We will give her GCSF (neupogen) shots at home over the weekend (or she might get one before she leaves here. That should help her counts rebound faster.

Back to clinic on Monday for evaluation and discussion of how/when to resume treatment. Neupogen is not normally used in leukemia patients, although we know a few other kids who have gotten the shots. We have a lot of questions, but we realize that we first have to get this skin infection/lesion healed.

Mollie just asked me what "b-a-l" spelled. I said, "ball." She said, "No... just ONE 'L'!!!" I did not know she knew how to spell ball. Now she wants to play "SuperWhy" on the computer so I'm signing off.

12.18.2008

The Goal

Dr. A said that he is going to try to send Mollie home tomorrow on oral antibiotics and neupogen shots at home! I would like to have her home- at least she will be able to walk around, go outside, eat the food she likes, etc. I think it would be very helpful to her mental state.

My opinion is that she is healing, but her counts are still very, very low (but coming up). The skin lesion looks "not that bad", the same, or a little better- depends who you ask. So, that's where we are.

She continues to be her sweet self for the most part. The heavy antibiotics (and probably also the chemo) are giving her bouts of nausea. And she does not wan to eat. We're working on it. I brought some stuff from home today - cheese, tortillas, applesauce, pecans- that she's been munching on.

ANC is up to 50 and she's getting a platelet transfusion right now.

12.17.2008

ANC = 12

That's better than zero... but now Dr. A thinks Mollie will probably be here until Friday. And, as always, that is just an estimate.

Ms. Kym from Child Life assured us that if we are here on Christmas, Santa does come here and visits each child. So, there's that.

This hospital stay has been really stressful. I knew this was a real possibility, but it is so hard to deal with this around Christmas. It is Lucy's first Christmas. And I love Advent and Christmas and all the baking, music, crafting, lights, etc. that go along with it. But we're not experiencing much of that.

We've had little tastes of Christmas... Mollie's German teacher, our neighbor Teresia, sent us some lovely German Christmas cookies and chocolates. And last night I found a fresh wreath with a big red bow on our front door (thanks! to whomever put it there).

Quick update

Mollie was in very good spirits today! She was playing hide and go seek, London bridge is falling down, doing artwork, having a tea party, playing with playdough. Basically, she was just being a kid.

Her lesion seems to be the same/better depending on who you ask. Her onc is saying she'll probably go home in 1-2 more days. We are all looking forward to that!

Mollie is awesome!! She has gotten a ton of toys and gifts since she's been in the hospital. Tonight we read "The Night Before Christmas" and she said, "I'm not so sure Santa needs to bring me any toys because I have so many. I have an idea... maybe we can give some of my toys to Santa's workshop so he can give them to other kids who don't have very many toys." She's so sweet!

Note: Jay and Diane are arranging for earmuffs!

Thanks for all the wonderful messages! Between hospital duty and Lucy duty, we have had NO time to respond to everyone, but please know that we appreciate all of the support!

12.15.2008

Now we're in isolation

Mollie's lesion looks a little better today, but won't heal until her WBCs go up. Since she just had chemo on Friday, that is likely to take a while. Dr. Murray, the infectious diseases guy, said they might let her go home soon-ish and keep her on strong antibiotics. Of course, I would prefer that, but we'll see. I would also prefer to finish this round of chemo. Again, we'll see.

In the mean time, we're in "isolation" in case this is a staph infection. So, as if being in the hospital wasn't sucky enough by itself, now we have to put on gowns and gloves if we want to leave the room (and these are not ballgowns!). Unless we're going off the floor. Uh, yeah, that makes a lot of sense.

In other news, Mollie has declared that she wants earmuffs for Christmas. I'm sure I will have no time to go search for earmuffs in Augusta, so if anyone wants to volunteer, let me know. And please do let me know if you find some so we don't end up with more than one pair of earmuffs (it is 75 degrees here today!).

Mollie also reports that she wants to start a button collection. If anyone has any extra buttons floating around, I'm sure Mollie would love them.

12.14.2008

From the hospital

Well, we're still here. Mollie's fever has come down, but she still has a nasty skin lesion. They are thinking it could be staph and she is getting vancomycin. The good news is that they don't think it is in her bloodstream; it is probably localized to the skin lesion. The bad news is that the lesion looks a little worse today than yesterday and we are not allowed to leave the hospital room.

It has been a rough day so far... as long as the doctors leave her alone, she's fine. But when anyone wants to poke and prod, she completely panicks. It is so difficult to see her this way. When the infectious disease doc came in, she screamed so hard she gave herself a bloody nose. And she just wants to go home. I have felt nauseated all day. I'm trying to help Mollie be strong and it's so hard to stay positive and not spend all my energy worrying.

Our good friends have been watching Lucy today-- such a relief!

12.13.2008

The Worst Rollercoaster Ride Ever

First, let me say that Mollie is doing pretty well at the moment. But the day did not start out that way.

I spent the night at home last night, and Matt stayed at the hospital with Mollie. Just as I was putting stuff in the car to head down the hospital, Matt called and said I needed to get down there, NOW (and hung up). After I was on the way- heart-pounding and freaking out, I called Matt back; he said Mollie was slurring her words and not responding to him. It happened really suddenly. My first thought was s-t-r-o-k-e. Her platelets had crashed overnight and were around 17, ooo (usually they are between 200,000 - 300,000) which meant she was at risk for internal bleeding (including bleeding in the brain). Of course, I was going over all the possible scenarios. It was not a good moment for me.

When I got there, Mollie burst into tears and continued to slur her words. Dr. Bell and Dr. Poole had been paged, but hadn't seen Mollie yet. I kept insisting, and finally a resident showed up and did a neuro exam, which didn't show anything unusual (except for the slurred speech). The doc kept asking Mollie some question that annoyed her to the point where she said, with perfect clarity, "I don't know." That settled it for him- he thought that this would resolve after a blood transfusion.

After the doctor left, Matt and Lucy took a walk, Mollie fell asleep, and I sat in the hospital room, closed my eyes, and just prayed. When Mollie woke up, she said, "I think I feel better. I think I just had a meltdown." And has not had any other slurred speech or unusual symptoms since. She got a platelet transfusion, and then red blood cells. The blood helped immensely. We spent most of the afternoon doing art projects and reading. As near as we can tell, the slurring may have been from exhaustion or dizziness due to her anemia/fever, fear of being in the hospital, reaction to all the chemo, or a combination. Needless to say, I am so thankful and relieved that she is doing better.

She is still very sick- she has a fever (which means infection) and is receiving two antibiotics. They're doing blood and urine cultures right now- no results yet. They stopped chemo (which I don't like) until her counts recover a bit. And she is getting GCSF shots to try to speed that process up a bit. At this point, she will be discharged when her fever goes down and her counts come up.

As if I haven't already written enough.... I have to mention the little boy in the room next to Mollie. He's probably no more than 3 years old and he's been there by himself almost the whole time. The nurse was talking about how cute he was, and a little troublemaker, etc. I assumed that the parents/guardian had to work and that's why they weren't there. The nurse made it clear that that was not the case- the mom treats the hospital visits like a vacation for her- free babysitting. It is so heartbreaking.

12.12.2008

In the hospital

Just a quick update since I'm tired... Mollie had a low grade fever this morning. Since she has no protection from infection right now, I brought her in to clinic. We thought it might be a UTI, but that doesn't seem to be the case. Her fever kept climbing so she was admitted to the hospital this afternoon. Her fever reached 103.7 but is on the way down. When I left, she was playing happily in the playroom. But... she has to get a GCSF shot (to help her bone marrow start making cells again) tonight so I know she is going to be pissed. Especially after we told her today was her last Ara-C shot. Ugh.

Celebrity Status


As you can tell from the picture, Mollie is bald. We put a unicorn tattoo on her head and she likes it so much, she wants to go out often without a hat. This means that people really notice her. She's my little celebrity. People often come up and talk to her, ask where she's being treated, and tell their cancer stories.

In the market the other day, a woman came up and greeted Mollie. We started chatting and it turned out that it was her son's 31st birthday that day. He had leukemia (ALL) when he was 4 years old! Mollie doesn't care too much, but I love hearing those kinds of stories!

We are headed back to clinic today for the last Ara-C shot! Today is #39 out of 42 days of delayed intensification. Again, we are told to expect her counts to really crash in the next week or so. Her last dose of chemo for this phase will be Monday night. Then it is "watch and wait." They will keep running CBCs to check her counts. Since she will be off chemo, her bone marrow should start recovering and her ANC should come back up. When her ANC >750 and platelets >75, 000, she will start maintennance (LTM). She will be on LTM for about 2 years.

12.11.2008

Mollie's ANC = 0

That's right. Zero. But, her hemoglobin is actually up a little. Platelets are low, but no transfusion needed yet. The NP thinks she'll need one on Tuesday.

We went to clinic this morning for a finger stick (CBC) to see if Mollie needed a transfusion. I mentioned to the nurse's aide that we were going to go back home and wait for the results and come back for the Ara-C shot and transfusion if it was needed. Nurse Pam overheard me from the other room; she quietly asked if it would be okay if she did a venipuncture on Mollie instead of a finger stick so that if Mollie DID need a transfusion, they would have enough blood to type and cross match to select the correct donor blood and we wouldn't have to come back for yet another stick. Hurray Pam! She really is awesome!

Since Mollie didn't need the transfusion yet, we hung out at home and just went back to clinic this afternoon for her shot. Just one left!!

Since her ANC is so low, we'll be hanging really close to home all weekend. We're aiming to put up our tree on Saturday.

12.09.2008

The Weekend and Clinic Update

Here's a clip of Mollie with Bill West from 102.3 The Bull at the radiothon on Friday morning:


(They spelled her name wrong... It was radio, what can I say?)

We had a terrific weekend. Friday night we went to a special holiday story-time at the library. We ran into a few friends we hadn't seen for a while and the girls had fun listening to the stories of Rudolph and Frosty the Snowman, singing silly songs, and making snowmen.

After the radiothon on Friday, Ms. Kym gave us tickets to see Disney on Ice! So, we decided to take Michelle and Isabella with us on Saturday night to see Mickey and Minnie's Magical Journey. Peter Pan was the best- they had a giant crocodile, a big pirate ship, and the Darling children and Peter actually "flew" on harnesses. The girls had a blast and did NOT want to go home.

Sunday was low-key. I baked cookies with Mollie and Isabella in the afternoon, and Mollie played at Bella's house afterwards.

Mollie got her 5th of 8 shots in clinic today. Her counts are down: ANC < class="blsp-spelling-error" id="SPELLING_ERROR_4">RBC transfusion this week, and probably again next week. She has been complaining of headaches, a common symptom of anemia, so hopefully a transfusion will make her feel better.

This is a good time to encourage everyone to donate blood at your local hospital or blood bank. Blood supplies tend to run low in the winter because storms keep people off the roads and the flu reduces the donor pool. Also, please consider donating platelets instead of whole blood. Platelets can only be stored for 5 days after donation, so shortages are common. You can only donate whole blood 6 times per year, but you can donate platelets 24 times!

In case anyone caught the spelling error in the post title-- I DO spell-check, it just doesn't do the title!!

12.05.2008

Half-way through

Well, the shot today went about the same. Mollie said it is the medicine that hurts, not the needle (confirming what everyone has told me). But, she got through it! We also saw the NP because this morning Mollie's legs started to hurt and she is having a little difficulty walking. She told the NP, "I can't walk very well; I can only waddle or limp. I just can't live like this anymore." This prompted a whole discussion about how Mollie is like an adult trapped in the body of a cute little girl! Honestly, I think it's just her vocabulary and cadence, but sometimes she really does sound mature.

Anyway, the walking issue is probably a temporary side effect of the ARA-C-. This drug can cause flu-like symptoms such as muscle and joint pain, and low-grade fevers.

Aside from the shot, she had a nice day. We went to the radiothon in the morning where she was interviewed by two radio stations, and NBC-Augusta news. She enjoyed being the center of attention, but wondered why there were no other kids there! And we're headed to the library for a holiday after-hours tonight.

12.04.2008

Shot #3

First, a picture, as promised:


The ARA-C shot today was even harder than yesterday. Mollie took one look at nurse Kate and started running! I caught her half-way down the hall.

She cried during the shot and said, "Oh! My poor, poor leg!" But, she got over it pretty quickly. We can't figure out why the shot didn't hurt on Tuesday. Kate is going to try a slightly different technique tomorrow.

The rest of the day was fine. Mollie was in a good mood; we went grocery shopping after leaving the clinic and she didn't feel up to doing much when we got home. I can always tell when she's not feeling great because she wants to watch T.V. After dinner and bathtime, Mollie played by herself (well, she had her babydolls) in her room. She seemed to perk up quite a bit- just in time for lights out!

12.03.2008

Shot #2 of 8

Today's AraC shot was a little more difficult than yesterday. Mollie did NOT want me to give her the shot at home- she wanted Pam or Kate (the onc nurses) to do it. They agreed and since we live just 10 min. from the clinic, we decided it was fine to bring her in for her shots. She is the one going through all the treatment, so we try to give her as much choice in it as possible.

Well, we forgot to put Emla (lidocaine) cream on until we got to the clinic so it didn't have much time to get absorbed into her skin. And apparently the shot hurt, because she really screamed. Five minutes later, she was feeling ready to walk to Amy's office to get a Christmas Barbie. (Okay, I don't like despise Barbie, but Mollie was really excited).

At home, Mollie was in a great mood again! We stamped, painted pictures, read library books, and just played around.

Tomorrow, it's back for another shot (unless she'll let me give it to her at home). And grocery shopping. Lucy is eating us out of house and home!

12.02.2008

Tough Kid

Mollie truly amazed me today.

We went to clinic prepared to get a spinal tap and more chemo if her ANC was above 750. Last week her ANC was 500, and Beth (the NP) was skeptical that it would be high enough this week. As it turned out, her ANC was 1330 today. They did a machine count and a manual count just to make sure.

So, she was NPO and had not eaten anything since 9 PM last night. She had an initial finger stick to measure her ANC. Then she got cyclophosphamide (Cytoxan) through her port. Then she got a subcutaneous shot of cytarabine (Ara C) in her leg. Then she was sent over to surgery for her spinal tap. After that it was back to clinic for hydration (and finally! some food). We arrived at the clinic at 9:30 AM and Mollie was hooked up to an IV from noon until 5 PM.

Still, she really had a great day. With all of those procedures, she didn't cry one time. Not even for the shot! Thank goodness for Ms. Kym, the child life specialist. She had Mollie making paper snowflakes, playing with stickers, and coloring an Ariel poster. Ms. Kym just "gets" kids and really can make Mollie laugh and enjoy her time in the clinic. Plus, the nurses, aides, and doctors at Children's are so good at what they do, that Mollie is very comfortable with the routines. She was so comfortable, she didn't even need versed to calm her nerves before her spinal tap!

So, long term maintenance (LTM) is within sight! The remainder of the current phase consists of 2 weeks of daily shots and oral chemotherapy. The doctors expect that Mollie's counts (RBCs, platelets, neutrophils) will drop drastically around Dec. 15 and might start to recover by Christmas. I wouldn't be surprised if we end up spending Christmas in the hospital because she spikes a fever or catches a bug.

Once her counts recover (ANC > 750 and platelest >75,000), she will start LTM. During LTM, Mollie will get chemo once per month, steroids 5 days/month, and a spinal tap once every 3 months for about 2 years. Most children go back to normal routines during LTM.

After we got home from the hospital tonight, Mollie continued to feel great! She was dancing around, singing, and playing with some of her new toys (she gets one every time she undergoes a procedure). And after dinner, she gave Lucy a pretend bath and they both were giggling!

A picture is coming... I promise!

11.30.2008

Feeling better

Mollie has been feeling much better these last few days, and she has really enjoyed her visit with my parents. She is her goofy, fashion-conscious self. Since most of her hair has fallen out again, she is also really into hats- thank goodness she has a lot of choices!

She is also eating a lot. She tried a little bit of everything on Thanksgiving, but decided the sweet potatoes and pumpkin pie were the best. Tonight she had macaroni and cheese with a side of.... cheese!! And she asked for even more cheese.

Dr. Bell said, "Cheese is good," so we're going with that.

Mollie is going to be on the radio this Friday (Dec. 5) from 10 -11 a.m. (Eastern time) as part of the 2008 Cares for Kids Radiothon. The proceeds from this fundraiser go towards patient care at Children's Medical Center. The money is used for everything from getting toys for the playrooms to helping in the purchase of new, advanced medical equipment.

Also, my sister's friend Dianne, is participating in the Leukemia and Lymphoma Society's Team in Training in honor of Mollie. The LLS has been a big help to us, so if you get the chance, please check out her website and pass the info on to others.

We hope you all had a lovely Thanksgiving weekend.

11.27.2008

The after effects

Well, Mollie is now off of steroids, but we are still feeling the effects in full-force! She ate two bows of pesto pasta for breakfast this morning (about 1.5 hours ago) and is now asking for grapes, chips, cheese, pretzels, and a tortilla! She has a bit of a "moon" face and is still very emotional.

And her hair is falling out again. She doesn't seem too phased by it- we have been talking about how it would fall out again for a few months. She is worried about her eyelashes falling out but I told her we could get her some sparkly false eyelashes if that happened; that made her feel better.

We went in to clinic for a CBC on Tues. and Mollie's ANC is 500. That's up a bit from last week, but still very low. It has to be 750 in order to continue with DI next week. I am hoping she makes the cut-off -I think we would all like to get this rolling before Christmas. Her platelets and red cells are low, but still sufficient.

Also, we were invited to participate in the radiothon next week. This fundraiser helps raise money for Children's Medical Center. I'll post the details in a few days.

This morning we talked about being thankful- here is Mollie's list:

my adorable little sister, Lucy
Isabella and Izzy
water
my toys
Thanksgiving
food, especially the kind they have at the hospital
my grandparents
mommy and daddy, a little bit
the doctors
church
food (again)

Happy Thanksgiving to all!

11.24.2008

One more dose

of dexamethasone (steroids). Just tonight and that's it for a few weeks.

Mollie stared off the day with a two bowls of pesto pasta, but ate a bowl of tomato soup for lunch! Hurray for variety!

She is really miserable- tired, indecisive, and cranky. Coming off the steroids is even more difficult, but at least my parents are here. We go back to clinic tomorrow for a CBC- we're hoping her counts are up so we can go do some holiday activities this weekend.

11.22.2008

Pesto pasta, on tap?

All I want for Christmas is... pesto pasta?

That's all that Mollie will eat or talk about. She said she even dreamed about it last night!

I have made at least four batches of it (and 1 run to the store to get more pesto- Contadina brand only!) in the last 2 days.

I wish our refrigerator had a pesto pasta dispenser.

11.21.2008

It's all about the food

For breakfast:
1 Yoplait yogurt
1 bowl of mashed potatoes with gravy (yes, for breakfast)
1 dinner roll with butter

20 minutes later.... "Mama, when is it going to be lunchtime?"

Mollie was practically begging to go to the hospital today because she likes the food they have. The only thing that satisfied her was pesto pasta. For lunch, dinner, and a snack.

We barely left the house, but had a good day anyway.

11.20.2008

Better

Last night I wrapped up some stickers and hankies and left them in Mollie's room so she would have a little surprise this morning. I think it was just what she needed to start the day off right!

We were cruising until about 2 P.M. - that's when the roller coaster started.

The steroids zap Mollie's energy and wreak havoc on her emotions. She is good at articulating her needs and feelings when she's well rested. But when she starts to get tired, watch out! It is all tears, pouting, yelling. All she really wanted to do was "play with some kids." Any kids. Except Lucy. Or me, pretending to be a kid. And this was after a 3 hour nap.

We're definitely getting cabin fever around here.

Last night Matt mentioned flights to the Turks and Caicos Islands are $130 each way. Hmmm.....

11.19.2008

Today was a long day...

Mollie wanted pancakes! for breakfast. So, I made pancakes, and she didn't eat them. (But Lucy ate 3 whole pancakes!!) All day she just had a hard time making decisions- this is typical behavior for when she is on steroids. Couldn't decided what to eat. Which pants to wear. Which shoes.

I planned to do a little prep for class tonight while Lucy napped, but she only slept for 30 min. So, I was pretty stressed and lost my patience a few times (and then felt guilty). These steroid days bite!

Still, we did enjoy a walk to the park and reading some library books about the constellations. I think we may need to go star-gazing one of these days- or maybe to the planetarium. Some catalogs came in the mail and we had a fun time looking at those, too. I remember how much I loved getting the Christmas catalogs when I was little!

When I got home from teaching tonight, Mollie was sacked out on the sofa with big, dark circles under her eyes. Poor kiddo! She woke up long enough to take her medicine and then I tucked her into bed in her clothes.

11.18.2008

ANC=300

Clinic went smoothly today. Mollie's ANC is 300 (500 is considered neutropenic with a serious risk of infection), so we will keep things low key this week. She got her chemo (doxorubicin and vincristine) and started another steroid pulse, so her counts should trend upward. No chemo next week, just a CBC on 11/25.

Mollie's next spinal tap is scheduled for Dec. 2, but they will only go ahead with the procedure if her ANC is above 750. Beth, the NP, seems dubious that it will be that high. The spinal tap (delayed or not) will start the second half of delayed intensification. She will get 3 new drugs- an infusion of cyclophosphamide on the day of the spinal tap, oral thioguanine for two weeks, and 8 shots of cytarabine. Then, her little body will be allowed to recover and it's on to long term maintenance (LTM).

That's the plan anyway...

11.16.2008

The weekend

Mollie had a wonderful weekend (and I didn't bust out the camera - so no pictures).

She went to Nadira's birthday party on Saturday. I didn't go, but from what she tells me, she had fun. I'm really proud of her because this was her first time seeing most of the children at the party since her diagnosis (and hair loss). She said it didn't bother her and one of the girls kept asking her why she didn't have any hair. Mollie said, "I tried to tell her it was because of my leukemia and my medicines, but she just didn't understand. And that's okay."

Today, Bella came over to our house to play for a while and then they both went over to Bella's house. I think they both got their fill of pretend play - house, princess and fairy godmother, ballerinas, and robots.

I think Mollie might be a bit anemic- she looks pale and seems a little more tired than usual. We'll find out at her next clinic visit on Tuesday.

11.13.2008

Good times


The last two days have been quite pleasant.

Today, especially. Mollie and I whipped up a big batch of granola. She has fun mixing in the honey and oil with her bare hands and making a big mess. (And I had fun cleaning it up and eating the granola).

Mollie declared that she wants to be photographer when she grows up. And a mama. And someone who takes care of Germans (don't ask) and mamas and babies. So, she took a few pictures with my camera:


This afternoon, we went to donate blood (well, I donated, while Lucy slept and Mollie chowed down on Chick-fil-A and got pampered by the blood center volunteers).

We stopped at a children's consignment shop on the way home and Mollie started thinking about Christmas. She gave me permission to start working on her Christmas gift- she wants a hand-made nightgown like she got last year!

After dinner, we played *princess* memory. Note to self: next time remove half of the memory cards before playing so it's not so HARD! While we were playing a package arrived from Denny and Susan with some goodies and it totally topped off Mollie's day.

11.11.2008

Food = Love


Photo by Alli Jiang on Flickr

Usually, I don't mind cooking. But there are days, clinic days and steroid days, when I often don't have the time or energy. When Mollie is taking decadron, I find myself making 15-20 little "meals" for her during the day. She will often beg for something only to be totally disgusted by it when it is put on a plate in front of her. By dinner time, I really don't feel like making yet another meal!

So... thank you to everyone who has given us food. We devoured homemade chocolate chip cookies from Richmond, CA during one of Mollie's hospital stays. We loved the huge package of Peet's coffee and tea. We have also received some Trader Joe's Indian food (just heat and serve!) and gift certificates to Very Vera's (yum, yum). And Mollie's grandmothers made food and put it in the freezer when they were here visitng.

Best of all, two of our neighbors, Michelle and Mara (and their families) have been making us delicious homemade food for clinic days. Lasagna, noodles with peanut sauce, chicken soup, and more. Often complete with wine, salad, dessert. It is so wonderful to end the day with a nutritious meal when you are too exhausted to cook.

We are lucky to be blessed with such caring friends and family.

D.I. - Week 2


I took Mollie in to clinic this morning for more chemo- doxorubicin and vincristine. For some reason, she was really scared of the whole visit, including the port access. She is off the steroids for 7 days, but I think the withdrawal is worse than the pulse itself. Her numbers were fantastic: ANC = 4800 (last week was 4700), platelets and hemoglobin were also good. We expect these numbers to fall this week, since she is not getting the steroids.

I talked to a few other "leukemia" moms this morning whose sons (all in long term maintenance) had experienced some sort of cognitive decline after chemo. We were told this is one of the common side effects of the intrathecal (spinal) chemotherapy. In some kids it is more noticeable than others. Right now, I am not extremely concerned about it (first, let's get through the chemo), but it is something to keep in mind and watch out for.

We ended up having a pretty good day. We went to lunch after clinic and then came home and made clothespin dolls from a kit (thanks Cameron!). After dinner, Mollie and I made brownies. Then she played a spelling game (Design Your Own Superhero) on the internet (PBS Kids- SuperWhy!). She loves SuperWhy! and was so proud that she could use the mouse and play the game all by herself!

She went to bed saying, "Mama, I had a really nice day. I always have a good day when you and daddy are here." She is just too sweet sometimes.

11.10.2008

Awake at 1:22 a.m.

Why? It has nothing to do with Mollie. Well, actually, just a teeny tiny bit. Mollie loves to change her outfit and I didn't realize quite how much her laundry had backed up, so I washed a bunch of it today.

Tonight the plan was 1) fold mounds of laundry 2) go to bed.

Here's how it went down: I started folding the laundry. I was about 1/3 done when Lucy started screaming. Went up, checked on her, tried to get her back to sleep, but no luck. I decided to let her cry for a little while while I folded some more laundry. That is when disaster struck- Otis (the cat) puked, leaving a big trail of cat vomit all over the living room carpet. Meanwhile, Matt got up and was, to put it gently, a little miffed at Otis. We still couldn't get Lucy to stop crying. I guess all the commotion woke Molle, who came downstairs to "make sure nobody fell down or anything."

How sweet is that?

Back to cleaning up cat puke...

11.08.2008

The Pendulum

Steroids. They make Mollie tired. And moody. The other chemo is bad in terms of the physical side effects, but the dex is what makes her go from "You're the bestest, bestest mama in the whole wide world" to "When I get bigger I'm not going to live with you any more! And I'm not going to have any babies. And I am going to have my own house with my own couch. Huh!"

(The latter statement was prompted by me sitting down on the sofa next to her. Jeesh, I should know better by now!)

Today wasn't too bad though. I took her to see Madagascar 2. She really enjoyed the movie. And the buttered popcorn and junior mints, getting out of the house, and some time away from Lucy.

11.07.2008

Ow! Shots.

Mollie got her PEG-asparaginase shots today- two painful shots, one in each thigh. She had to stay at the clinic for an hour afterwards to be observed for allergic reactions.

The shots were pretty awful- she screamed for someone to help her and said she was trapped and wanted to get away. Thankfully the traumatic part lasted only 5-10 minutes, and most of this was before actually getting the shots (the anticipation). A few minutes afterward, Kym, the child life specialist, had her laughing at Aloysius the bubble-eating alligator, decorating a turtle, and watching Angelina Ballerina for the observation period. And eating Cheetos. Lots and lots of Cheetos.

She's been walking around a bit so I think some of the pain is wearing off. She just told me she forgot about her shots, but she didn't forget about being a brave, strong girl!

11.06.2008

Just So-so


The steroids make Mollie really indecisive. She's not sure if she's hungry or if she's tired. When she gets upset, she has a hard time calming down. She needs a lot of hugs. And ice cream.

We decided we were going to go to the park since the weather was lovely, but then Mollie fell asleep. By the time she woke up, it was starting to get dark. So... we went to run a few errands and ended up finding a cool toy store called Learning Express. I let Mollie pick out a toy and she picked a set of marbles, complete with a shooter. We played marbles after dinner this evening, so the day was not a total wash.

11.05.2008

Steroids, Day 2

Today was not a good day for me, but Mollie actually did very well. My problem was not getting any sleep last night. I stayed up to watch Obama's speech and then I was just headed to bed when Lucy started crying (she barely got a nap in yesterday because of clinic, so she had gone to sleep without eating). I fed her, got 3 hours of sleep, and then Mollie woke up. It was downhill from there (no more decent sleep the rest of the night).

So on to Mollie. She is alternating between being lethargic and very active. She has huge dark circles under her eyes and some nausea. I don't know if it's from the steroids, the vincristine, or the doxorubicin. She is not very interested in eating and her diet today consisted of cheerios, chocolate milk, a tiny amount of sliced apple, a piece of cauliflower, a roll, a few pieces of cheese, and chips. There are medications to manage most of the side effects, so we will just try to roll with it. Tomorrow I'll try making her a smoothie to give her some good protein.

11.04.2008

DI Begins

Today was a big day. This morning, my dad headed home and we headed off to clinic. Mollie's ANC was 1470, so she got her doxorubicin (i.v.), vicristine (i.v.), and methotrexate (spinal/LP) and she started a 7-day pulse of the dreaded decadron (and it is a higher dose than previously). She didn't get over to the OR for her LP until late in the day, so she was hungry all day long. She did great though.

We went to vote afterwards and we are back home, about to enjoy a delicious dinner made by a neighbor (we also enjoyed a delicious dinner from another neighbor last night).

We are all tired, and worried about dealing with Mollie on steroids for the next few weeks (even Mollie is concerned). I am not looking forward to the PEG-asparaginase shots on Friday either. Forty -two days until this phase is (scheduled to be) over- we have been warned that there are likely to be delays due to low WBC/platelet counts.

11.02.2008

Rotk├Ąppchen

Well, since Mollie didn't start chemo last week, we had a fun, fun Halloween. We kicked off the day by trick-or-treating at the hospital. We got to see all of the staff dressed up and Mollie got tons of candy and non-edible treats (stickers, pencils, a tooth brush!).

That was followed by pumpkin carving at our house, trick-0r-treating in our neighborhood with Bella, and then to Inna's well-decorated house for tea.

Lucy was the side kick (she was the big bad wolf to Mollie's red riding hood) and she fell asleep while trick-or-treating.

Problems uploading pictures.... will get them soon I hope!

10.30.2008

October Fun


Does anyone know how to make a photo mosaic where you can click on an individual picture and expand it?

10.29.2008

Tagged

Mollie was tagged by friend RGW. That means she has to tell 7 things about herself that you (the reader) don't know.

With a little help from Mama, here they are:

1) I have never eaten a hamburger.

2) I've got the tiniest hint of a Southern accent. When I say "jail", it sounds like "gel". When I say "hill", it sounds like "heel". My mom and dad have noticed the occasional "y'all" creeping in.

3) I have never had a soda.

4) I am scared of monsters, ghosts ("ghostes"), and monster-ghost mixes.

5) My favorite dream is that I am sliding down a rainbow.

6) I get really sweaty when I sleep soundly.

7) I am going to be Little Red Riding Hood for Halloween.

I am tagging Alyson, Katie, Isabel, Marielle, Emily, and Serenity.

10.28.2008

Scratch That

Mollie's ANC was 700 today so they are not going to start DI. I'm glad in a way (since Matt will be here to help and Mollie can enjoy Halloween), but I really want to just get this all started so it can be over.

And I'm annoyed we had to wait 3 hours in the waiting room, with Mollie having eaten nothing since 9 PM last night, only to be sent home. But now we're going to get burritos!

A little more detail added...
Mollie's ANC was 700 and the cut-off for beginning treatment was 750. So, we are going to try again next Tuesday, change one of her regular meds this week, and hope for a higher ANC next week.

10.27.2008

DI

Tomorrow, Mollie begins delayed intensification (DI). This phase lasts about 6 weeks. Here is the list of chemotherapy drugs she will be getting:

Vincristine
Dexamethasone
Doxorubicin
PEG Asparaginase
Cyclophosphamide
Cytarabine
Thioguanine
Methotrexate

She will get most of these multiple times during this phase. All of them can have serious side effects. And they all kill cancer. The goal of this phase is to use new, more toxic drugs to kill any leukemic cells that may have escaped the induction and consolidation phases. So there we are. Without this phase and the 2 years of maintenance that follow, most leukemias relapse. I've been reading a lot, and the subject of relapse always seems to come up. I just can't go there mentally. It's hard, but I think the only way to deal with this is to take it as it comes. Of course that doesn't mean I'm not worried.

Because we expect that Mollie's blood counts (red cells, white cells, and/or platelets) will drop in the coming weeks as a result of the chemo, we have been trying to get in a lot of fun stuff the last week or so.

We celebrated Lucy's 9 month birthday (wow, how did that happen?!) with a trip to the pumpkin patch last week. The weather was beautiful and we had a lovely time. Mollie already had a pumpkin so she picked out some decorative squash.

This weekend, Mollie and Isabella had a lot of playtime together and they thoroughly enjoyed it (no fights!!). They had their first German lesson and learned the parts of the face and colors. We also made "scarecrows" out of pine straw and some of Bella's old clothes. They turned out cute, but girls enjoyed painting the faces on the pumpkins more than stuffing the clothes with pine straw.

Not sure how Halloween will go. Mollie is excited, but she doesn't know she has to get two painful, intramuscular asparaginase shots in her legs the morning of Halloween.

10.26.2008

Pumpkins


Can you guess which kid is which?

10.21.2008

Walk in the Park

[click on the picture for full size]

The weather was beautiful on Sunday and we were all feeling well, so we headed out to a local park (swamp) for a walk.

The fall colors haven't peaked yet, but we did see some fall blooms, migrating birds, and a 6 foot alligator!


Mollie still has a cough, but she is perky, eating well, and seems fine. Today she had a cardiac echo to establish her baseline heart function before she begins delayed intensification (DI). Next week she will get doxorubicin, a very cardiotoxic chemotherapy drug. They will continue to monitor her heart function throughout the DI phase.

I asked about why they do not do any additional bone marrow biopsies after remission is achieved. Turns out that they have figured out it doesn't help discover relapses any sooner than monitoring the blood cells, so it would put the kids through unnecessary anesthesia/procedures. Also, I read about a cardioprotective drug, DXR, that used to be given with doxorubicin. They used to use it but it has some myelosuppressive side effects and unknown long term side effects. In cases where they have to use extremely high doses of doxorubicin, they do still use DXR.

So, I am satisfied with the answers to my questions today and I'm looking forward to getting the delayed intensification behind us.

Poor Mollie has to get PEG-asparaginase shots on Halloween!! Maybe she'll still feel like trick or treating in the wagon.

10.18.2008

Feeling Fine

This morning I was getting Mollie some Cheerios (if she doesn't eat first thing her stomach gets upset) and she said, "When Daddy wakes up, will you ask him if we can go jogging together?"

This is the child who got out of the hospital yesterday afternoon. So they went. I am not sure how much she ran, but she is tired out now and taking a nap in her room.

She wore her new Nikes (just like Daddy's shoes) that Paul sent last week!

10.17.2008

We're out

Just a quick post to let everyone know that Mollie was discharged this morning. She is still neutropenic, so we will keep things low-key until we go into clinic on Tuesday. Mollie didn't want to leave and was dragging her feet while I was trying to hurry her out of there! We brought home 6 cartons of chocolate milk from the hospital and I had to promise to do arts and crafts later today (at home).

Sally and Katie are off to the airport and Matt is on his way back from NC. I am hoping we can carve out a nice naptime this afternoon.

I am anxious to talk with oncologists next week and see what the plan is for the continuation of treatment.

10.16.2008

Still here

Mollie is still in the hospital. Her ANC is up a bit, but she is still neutropenic and still has a cough. Her moods are up and down, mostly as a result of her being stuck in here. One of her favorite nurses (Holly) is here tonight and the Child Life team has been really great. Oh, and the unlimited supply of chocolate milk makes Mollie really happy. So, she's hanging in there.

I am so thankful Sally and Katie are here! They have been very helpful and it always makes things easier emotionally to have someone else to talk to. Today we had a fancy teaparty in Mollie's hospital room, complete with lace tablecloth, monogramed napkins, and a selection of delectable cookies. I'm sad that they are leaving tomorrow and that we won't be able to make it to my grandpa's memorial. The nurse will draw labs in the morning- hopefully Mollie's counts will continue to increase and we can get out of here soon!!

In other news, I had portraits of the girls shot at our house last Sunday and the photographer posted some of them on her blog. I am really happy with how these turned out and I'm looking forward to seeing the rest. We had to cancel several times because of weather and illness and it started raining just a couple hours after she shot these pictures!

10.14.2008

Okay, so we're going to be here for a while

Mollie's ANC is 190. This means she is severely neutropenic and very susceptible to infection. A normal ANC value is above 1500, so she is really low. She will be admitted and administered an antibiotic.

"Plans" really do change quickly around here.

In the hospital

Bleh. Bleh. Bleh. Bleh. Bleh.

Mollie spiked a fever this evening, landing her in the hospital. We are waiting on labs and hoping to be able to go home (but we'll probably end up admitted). She has had a lingering cold, and with starting school again last week, this was probably inevitable. So please keep your fingers crossed. We are planning to travel for my grandfather's memorial in a few days and we really want us all to be able to attend.

The hardest part tonight was that the nurses (all three of them) had a very difficult time getting Mollie's port to work. This is the venous access port that is implanted under the skin of her chest and connected to her jugular vein. After every access, it is supposed to be packed with heparin to keep it from clotting, but we are not sure if they did it last week because they de-accessed her in the OR after her spinal tap.

Tonight, the nurses kept moving her arms in all different positions and they couldn't get it to draw back or flush. It might have been clogged. On the 4th try they got it (thank goodness!!) and were able to send the blood off for analysis. Mollie yelled a few times but mostly coped in her usual way by saying, "Bleh. Bleh. Bleh. Bleh. Bleh." And sticking out her tongue and squeezing my hands.

Reminders to self:
1) Always have the nurse access her port while she is sitting up.
2) Next time we are in clinic, ask what size needle to use and WRITE IT DOWN.
3) Double check that her port is packed with heparin after each de-access (esp. if we are not there when it is de-accessed).

10.11.2008

Update

Mollie has had a good week back at school. I am so happy that her life has been pretty normal for these few days. My grandfather passed away on Tuesday, so this week has been bittersweet for me. He was 97 years old and one of my favorite people. Just by chance, the opportunity for Mollie (and maybe me!) to take some German lessons came up. My grandpa was born and raised in Germany and I know he would love that. So, we will see if we can arrange it.

Last night was the Fall Festival at Mollie's school. She and Isabella enjoyed singing and dancing with Miss Cookie, and Mollie was proud to show of her skills on the swing. The weather was perfect and it turned out to be a lovely evening.

These other photos are from a few weeks ago- Mollie went to a baby doll "shower" at local toy shop. She made a blanket for baby Annabelle and all the girls paraded their babies up and down the street.

10.06.2008

First Day of Pre-K



Mollie had her first day of pre-kindergarten today; it went well! There were special "Welcome Back Mollie" signs and cards and she just jumped right back in with her friends (many of them are the same kids she's been in daycare with for the last few years).

She made sure to wash her hands and acted very responsible. I am struck by how mature she is for 4 years old. I missed having my little buddy around to talk to all day today, but Lucy and the laundry kept me busy (and a loose end from my old job. Sigh.) Lucy got some one on one mama time at the park, but I think she missed Mollie too since I am not nearly as entertaining.

10.05.2008

Lighting the Night

The Light the Night walk was a success! Mollie was being difficult (steroids, I'm sure), but once everyone showed up and we started walking, she warmed right up.

Marching for Mollie ended up being one of the top fundraising teams! Thanks everyone for your donations and support!

All the walkers carried balloons- survivors carried white balloons, supporters carried red balloons, and teams who were marching in memory of someone who lost their battle with cancer carried gold balloons. The balloons had small candle-size lights in them and it was very moving to see the trail of lit balloons lighting up the night.

Mollie was thrilled with all the people who showed up- she was exhausted by the end of the night, but she was taking all about it this morning. We'll be doing this again next year.


10.04.2008

Steroid Pulse



This is Mollie on steroids. She gets tired and moody, but also has some really sweet moments. It's a roller coaster for the whole family, but like we always tell Mollie, it's helping her kick cancer's butt!

10.01.2008

Today's Update

Mollie had a spinal tap/chemo today- all went well. I am sick so I couldn't go into clinic. She went with Matt and I stayed with Lucy. Her ANC was 2400 (around 1000 is borderline neutropenic, so higher is better) and she got the go ahead to go to school!!

I am going to try to make arrangements for her to start Monday, at least for a few weeks before she starts delayed intensification. I've gotten so used to staying home with her... this is going to be a big change. As I've said before, I have mixed feelings about it, but I know Mollie is looking forward to reconnecting with some of her friends.

9.30.2008

Final Push for the LNT Walk

The Light the Night walk is this Saturday - this is the last week of fundraising. You can donate at the Marching for Mollie webpage (just click on the team member to donate) or just click here.

We appreciate all of the wonderful support and all the walkers who will be joining us! For the locals, look for an e mail from me tomorrow about where we plan to meet before the walk and eat after the walk. Also, if you have collected any cash donations, let me know and I can pick them up and turn them in before the walk.

9.26.2008

100 Days


Today is Mollie's 100th day of leukemia treatment.

I never thought I would find myself in this position- the mother of a child with cancer. I worried about accidents, choking, whether she was going to the right day care/preschool and eating enough protein. Cancer wasn't even on my radar 3.5 months ago.

Oh how things change. Our family has been through the ringer. Nothing can prepare you for something like this. We've learned a lot and changed for the better. We've had tremendous support and made new friends.

Mollie is stronger, more outgoing, braver, and more articulate than ever before. I told her today was 100 days since she started chemotherapy and asked her how she felt... she said, "Great" with a big, genuine smile!

We still have a long road ahead: intense chemotherapy, two years of maintenance, and a lifetime of careful watching (or worry?). We also know that it can all change in a moment, so we're busy enjoying what we have.

9.22.2008

Kindness

Since Mollie was diagnosed with leukemia, we have received so much kindness and support from friends, family, and people who don't even know us. Three months into this journey, I just wanted to say THANK YOU.

Thanks for the calls, cards, and e mails of support. The packages and letters for Mollie. The double stroller. The prayers and well-wishes. The growler of Thoroughbred Red, delivered to our house. The baby-sitting and play dates. Hair. Visits. Food. Donations. Blood.

You know who you are. Thank you.

Ponytail hat



Last week, Mollie got this great hat in the mail. The woman who made it is a relative of one of my mom's coworkers. Her daughter had leukemia a few years ago, so she knows what it's like.

This hat is the perfect solution:
It's pink.
It's from Boston (Mollie was born in Boston).
The hair color is a perfect match.

9.19.2008

Marching For Mollie


We will be walking in the Light the Night Walk on Oct. 4 to raise money for the Leukemia and Lymphoma Society.

If you're local and want to walk with us, call me or register on our webpage (click "join"). I'm going to *try* to get pink T-shirts made up for participants.

Our fundraising goal is $1000. To donate, click on a team member's name (or just click here). Enter your donation amount and click "donate" and you will be taken to a secure website where you can use your credit card to make a donation.

Our family really appreciates the research, financial assistance, and, especially, the information packets, that the Leukemia and Lymphoma Society provides. Please help us support this organization and pay tribute and bring hope to thousands of patients battling blood cancers.

Just a reminder...

If you bought (or plan to buy) the $5 Macy's shopping pass from CureSearch, the day to shop and get your discount is tomorrow, Sept. 20. 20% off regular, sale, and clearance merchandise (10% off mattresses, furniture, rugs).

And if you haven't had a chance yet, you might want to watch the videos at www.completethecure.com.

9.17.2008

Treatment plans

Today, in a brief discussion with Mollie's nurse-practitioner, we learned (to my surprise) that there are no planned bone marrow aspirates or hospitalizations in the remainder of Mollie's treatment.

Wow. I have kind of mixed feelings. Well, I'm glad that there are no more planned hospitalizations. Everything is outpatient and she'll only have to be hospitalized for complications like fevers (let's hope there are not many of these).

The bone marrow bit surprised me though. A bone marrow biopsy is the only way to confirm a diagnosis of leukemia. Mollie's biopsy was negative at the end of Induction, so she was declared to be in remission. According to the NP, the additional phases of treatment are designed to keep the cancer in remission and they don't need to look at the bone marrow again unless there are indications of a problem. Personally, I wish they would look. And just make sure, again, that the cancer is totally gone. And stays that way.

Guess I've got some more reading to do.

Update

We've been busy with everything except blogging. Here's what's up:

Mollie has a new-found love: swimming! We spent all day Sat. and Sun. at the pool with friend Isabella.



We met with the wish volunteers. They brought Mollie (and Lucy) some surprises and made Mollie feel very special. The three wish choices are 1) Disneyworld, 2) a playhouse, 3) Hawaii. I think we're going to request that they change #1 to playhouse though. We may end up going to Disneyworld with Isabella and family (more fun for all, I think). And Mollie has really been talking more and more about a playhouse...

Mollie started "Fairytale" ballet classes and storytime at the library. She is enjoying both immensely.

Mollie's clinic visit went very well today. Her ANC is borderline (1000) but still high enough to continue chemo at the current doses. She's really comfortable at clinic now and there wasn't a single tear this morning for her blood sample. And, she was having so much fun doing artwork with Kym, the child life specialist, that we had to stay an extra 45 min. or so!

9.10.2008

Trying something new...

Slidesow: some additional photos from my mom's visit

Four Wishes


One of Mollie's favorite things to do when we go to the botanical gardens is to throw a coin into the fountain and make a wish.

When we went last week (with my mom), Mollie made 4 wishes:

I wish I would never ever have chemotherapy, ever again.

I wish I can go to Disneyland and the doctors would say it was okay.

I wish I would go swimming.

I wish we could come back to the zoo someday.

And we just found out Mollie will be getting a wish from the Make-a-Wish foundation. We are meeting with her "wish facilitators" tomorrow evening. They lost their own daughter to a congenital heart defect. They had a wonderful "wish" experience with their daughter and I am looking forward to meeting them.

Mollie understands (sort of) that she'll be getting a wish that will help her stay strong in her fight against cancer. She comes up with all kinds of stuff but the top three are: a "playhouse with a fireplace, tea set, and garden", a trip to Disney, a trip to Hawaii. This is Mollie's choice and we don't want to influence her (well, we have to provide some guidance so she doesn't wish for something that she would scare her). I'm interested to see what she finally chooses.

Fairy Day in a Box

My friend Gen had a Fairy Day in honor of Mollie at her bookstore. Yesterday, Mollie received a box full of fairy activities for her to do and cards from people who attended Fairy Day in Bishop, CA. She was really impressed that she got so many cards from people who don't even know her. Thanks for making her day, G!


The postman also brought a card from Emma Grace. Mollie's reply is, "Let's play sometime soon!"

She got a picture from Izzy, who moved to Seattle. Mollie always asks when we're going to move to Seattle, but has settled on being pen pals with Izzy for now.

And she really loves the coloring book from Uncle Jim.

So, thanks everyone for helping to keep her spirits up!!

9.08.2008

Food for thought...

This article, Rethinking the War on Cancer, just appeared on Newsweek's website. Overall, this is a very thought-provoking article and it is full of interesting bits of information (Did you know President Bush's sister died of leukemia when she was 3? And that Farber first used the first anti-folate "chemo" drug in 1948.) There is also a section on the success of pediatric leukemia treatment (referring, presumably, to the Children's Oncology Group).

No more steroids for 23 days! Woo hoo!

9.07.2008

Childhood Cancer Awareness Month

September is National Childhood Cancer Awareness Month.

We certainly were not very aware of childhood cancer before Mollie was diagnosed with leukemia. I had no idea of the progress that has been made in treating leukemia in the last 25 years. But I also had no idea how many children suffer from cancer, how difficult it is to do research on childhood cancer, and how little is known about the causes. These are just a few statistics. For more detailed information, I'll direct you to the links in the sidebar.

Childhood Cancer Facts
  • Each school day, 46 children are diagnosed with cancer.
  • One in 330 children will develop cancer by age 20.
  • Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
  • Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
                  • From www.candlelighters.org

You can raise money for the Children's Cancer Research Fund by without even opening your wallet. Simply watch a few short videos at www.completethecure.com. For each video you watch during the month of September, a group of corporate sponsors will donate $0.25 to the research fund. You can watch these over and over and send the links to your friends, put them on your websites, etc.

For those who like to shop, you can purchase a Macy's shopping pass from CureSearch. This $5.00 pass give you a 10-20% discount on all Macy's items for one day (Sept. 20). Yes, that included mattresses, furniture, and rugs.

9.06.2008

Up and Down

Well, 3.5 days into the 5-day steroid pulse, and we're feeling it. But, all in all, it's going quite well. Mollie's energy level is up and down and she's having dramatic mood swings. Everything about her can change (and does) at the drop of a hat.

It seems like she really struggles to express herself while she's on the dexamethasone. Sometimes she's full of insight, and then a few minutes later she's trying to explain something she can't find the words for. From there, it's a downward spiral.

I am really glad my mom is here to run interference right now. With Lucy teething and Mollie's moods, the days are really challenging.

9.03.2008

It is official

Today is Day 1 of Interim Maintenance (IM). Mollie is "scheduled" to be off therapy 2 years from today. I can't look that far ahead yet, but it feels good to know that we've come far enough for the doctors to already be mentioning the end of therapy.

Clinic went well but we had a long wait. Mollie was walking all over the office today, chatting everybody up. Matt remarked that when this all began, and Mollie was very shy and defensive around the medical staff, that Dr. V said, "Just wait a few months and she'll be running around here like she owns the place." So true.

9.02.2008

IM

Tomorrow (Weds) Mollie starts Interim Maintenance (IM) if all goes as planned. No spinal tap (yay!), but she will get IV and oral chemo, including methotrexate by mouth. This will be her first time taking oral methotrexate so we don't know how well she will tolerate it. She will also start a 5 day "pulse" of steroids. This is basically going to be a little taste of the long term maintenance (LTM) regimen she'll be on for about 2 years.

Consolidation was a breeze and we are hoping Mollie will tolerate this next phase just as well.

Requests: The child life specialist at the clinic said that she has a hard time finding "girl" toys to keep available because 1) they need to be able to be sanitized between kids (so no soft surfaces or wood) and 2) they can't be choking hazards. She's found a couple of "Dora" toys and Mrs. Potatohead, but not much more than that. Any ideas?

8.27.2008

Clinic again...

First of all... Hi to Uncle Sam. Hope you are enjoying things stateside (and in tropical paradise, no less).

We left the hospital Monday morning. No conclusion about what caused the fever... probably just a minor yeast infection? Anyway, IV antibiotics did the trick.

Tuesday was spent hanging out and making Flower Fairies (using a kit from TC).




Mollie went to clinic today (dressed like a rockstar).



It was a quick visit just to monitor her CBC. We spent most of the time in the waiting room playing bowling on the Wii (well, Mollie watching and Matt and I playing). Mollie's blood counts were great. Her ANC was 5400. At diagnosis, it was 0. Since then it's bounced around between 800 and 3000, so today's results are really good. That means she has one more week of consolidation therapy and then she starts interim maintenance (IM). IM starts out with IV vincristine, a 5-day pulse of dexamethasone, oral 6-MP, and oral methotrexate. Sounds worse than consolidation to me.... but it is essentially the same therapy she'll be on for the next two years. In fact, the protocol states that she will be on long term maintenance (LTM) for 2 years from the day she starts IM.

Postal service update: we have received several letters and postcards (Mollie enjoys hearing from friends and family) and a package from Lauren (Mollie loves the paper dolls).

8.25.2008

Hospital Ins and Outs

Mollie woke up at 5 AM Sunday with a fever of 99.5. Throughout the day she complained of various ailments and wanted to go to "that place where they have comfortable beds and Rice Krispies" (the hospital). We decided to just keep checking her temperature and it stayed between 99 and 100 all day. So we finally spoke with Dr. B who sent us to the Pediatric ER.

She got her port accessed AND also a venous blood draw (to make sure there was no infection in her central line). Then she got IV antibiotics and we waited around for something to happen.

Finally the attending came in and told us he had Dr. B on the line; they wanted our opinion on whether she would be better off going home or being admitted. Matt and I both preferred to go home, and they said fine. But... Mollie was all set to go to the hem/onc floor and get settled in. So we spent about 10 minutes talking her out of staying in the hospital and hyping up going home.

About five minutes later the attending came in and said, "Dr. B just put the brakes on going home". All the doctors are scared of Dr. B. So we had to re-talk Mollie into staying in the hospital. Sigh.

Looks like we're going home today though. Dr. A rounded this morning and agreed to discharge her since her fever is down, her ANC is good, and this doesn't look like anything serious.

Right now Mollie is at Camp 2 Go. The child life team is hosting a "summer camp" right here in the hospital. I'm headed out to see if she's having fun...

8.22.2008

Clinic visit continued....

I *think* our internet access is fixed (fingers crossed).

Mollie's clinic visit went very well. She is tolerating the 6-MP very well. Her counts have been very good (ANC = 2900, plts and Hgb in the normal range).

In general, she is doing very well. Her appetite is not very good, but she's maintaining her weight. She can now swallow pills, so giving her medications is much easier. Her main complaint lately is that she wants to go to school. She's also complained that her forehead hurts sometimes and she feels like spitting up (but hasn't). These episodes seem to last only for a few minutes- I think it's nausea.

I am worn out. My biology class started last week and it's the same class I taught over the summer so it's not too much work. I have some loose ends to tie up from my previous job (ugh, sigh of dread). And I've been staying up late watching the Olympics (I just can't help it... they only come once every four years).

8.20.2008

Clinic visit

Today we're in clinic for IT chemotherapy (the last spinal tap for a few weeks-yay!).

My internet service has been down and classes have started for me so I haven't kept up with the blog as well. Hope to be back online soon.

8.16.2008

Hair

I received this e mail the other day (Skimra is my sister's best friend):

Hey everyone,

Well the time has come, and yes, hell has frozen over. On August 8th, 2008, we had our final assembly at Camp O---- for the summer season. At that assembly, I asked M---- to cut off 12 inches of my hair to be donated to Locks of Love. After the hacking session, the total amount of hair, braid and all, was about 15 inches. I never thought I'd actually do it, but I think it was about time for a change, and to try and do some good in the world for those who are going through tough times. I offered Katherine my hair for little Moll
ie, but we both agreed that Mexiswede hair was probably not the best pick for her blue eyes, fair skin, and platinum blonde hair...

Here's best wishes to Mollie and all others fighting the fight... Keep going, and never give up.

For your enjoyment, here are some pictures of the epic event.

Love,
Skimra


Skimra you are awesome!

Mollie and I have talked about wigs and she *thinks* she wants one. Seems reasonable, but the wig she wants is a rainbow afro!





8.14.2008

More on that address book...

I found it!! In the diaper bag (tells you how much stuff is in the diaper bag, LOL).

What a relief!

By the way, for high school friends, Giancarlo's mom gave me that address book as a high school graduation gift!

Activities

This week should have been Mollie's first week of pre-kindergarten and she can't attend. Poor sweetie. She said, "I wonder what all of the kids in my class are doing right now..." She really misses the regular contact she's had with friends. We've signed her up for the library story hour and I'm trying to find a ballet or dance class because she loves getting out of the house.

As for what the future holds, school-wise, I can't even go there. I have so many concerns about socialization, academics, religion, etc. I have too many other things on my plate right now to start down the path of.... "If we don't get her into the right preschool then we might not get our first choice kindergarten" or, since we were talking about moving (pre-diagnosis), "What happens if we move?".

So, I'm just doing my best to keep all three of us occupied, active, and learning new things. This afternoon we went to a local park/interpretive center and Mollie had a great time looking at all the flora and fauna. Anyone know a good place to get one of those insect magnifying glasses?

After the park we stopped at a local kids consignment store and looked around. Mollie has a little "spending" money so I told her she could pick something out. There were all kinds of dolls, toys, crowns, etc. You know what Mollie desperately wanted? A mop! So, Mollie is preparing to do some cleaning with her new rag mop and the broom/dustpan she already had.

8.13.2008

Routine? clinic visit

Mollie's ANC was good today (2400), and her hematocrit and platelets were within normal range too. The spinal tap went well and Mollie was very friendly with all the doctors and nurses.

The only unexpected thing that happened was the cafe where Mollie wanted to eat afterwards was closed. But, all she really wanted from there was a bag of Doritos, so we just stopped by the market and picked up a bag on the way home. Lunch after an overnight fast is NEVER healthy. Oh well.

8.12.2008

Appointment tomorrow...

The last few days have been happy! We went to the park and library yesterday....



































And today we went to the botanical gardens (and zoo).







































Tomorrow is a clinic visit, so... NPO tonight and then tomorrow morning Mollie gets her port accessed, a CBC, and a spinal tap.