7.18.2008

A few other pictures from today...



I can't thank our friends and family enough for the stroller! We took it out for its maiden voyage today and it's perfect. It touches us that so many people care about Mollie and our family!

Mollie was in a much better mood today so we did some crafts and artwork.

Now she's got a slight fever and a cough so we may go into the hospital tomorrow if it doesn't clear up by morning.

Package update:
The Shannons

Arn and Catherine

Zack, Zoe and Sophie

Marian Warmerdam

Pammy (bubble blower)

7.17.2008

Babyhead. This is what Mollie calls people (her parents, doctors, etc.) when she's really angry. We heard it quite a bit today.

We went in to the clinic about 9:30 AM to have her port accessed and bloodwork done. Dr. B thought her hemoglobin was too low, so she got a blood transfusion at the clinic. Then we headed over to the OR where they did her LP and BMA. It all went smoothly, but damn, it was a long day. The poor kid hadn't eaten since about 10 PM last night and she didn't get into surgery until 2:30 PM!

She demanded chicken nuggets as soon as the anesthesia wore off. We won't get the results of the bone marrow biopsy until Monday, but we're hoping for a nice chemo-free weekend.

Thanks to Michelle and Isabella, our Thursday night dinner fairies! And it was nice to see a few friends (Amy and Jeanene) during lunch today!

We ended the day on a positive note (after a grumpy, post-chicken nugget mood), with Mollie saying it was a good day and wanted to make bracelets for her doctor (the same one she called a babyhead)!

7.16.2008

So, a fabulous twin stroller arrived on my porch today! All I can say is THANK YOU! I still don't know the whole story (who it is from) but nea has sent a card so I will soon learn. It didn't arrive until just before I left to teach tonight so I haven't even set it up yet, but I am so looking forward to getting both kids out on a long stroll.

Tomorrow Mollie has procedures. That means she is NPO starting at midnight tonight (because of the anesthesia) and THAT is going to be a challenge since she's so hungry. But we'll see it through. We'll go to clinic to get her port accessed and CBC/Chem panel and then over to the OR for a bone marrow aspirate and LP (lumbar puncture). They will do a spinal tap to look for cancerous cells in the central nervous system and then give her methotrexate intrathecally (in her spinal column). Our hope is that she is still in remission and we can proceed on to the next phase of treatment, consolidation.

7.15.2008


Today was a little better.  I think Mollie is starting to accept the new normal.  She makes comments about her swollen tummy or face and says, "It's not my fault, it's the cancer's fault.  And I'm gonna fight that cancer."

We made beaded necklaces today- it gave Mollie something to do with her hands, it was creative, and she could do it without much help. Perfect!

In the picture... Mollie was giving Lucy a little love.  She had just eaten spaghetti (hence the orange mouth).  She's got two stitches on her neck from the Mediport placement.  They come out Thursday.  She won't let me anywhere near them to clean off the sticky band-aid goo, so that's why they look kind of gross.

7.14.2008

Today was hard. We had to go in for labs, then chemo. The cranked the vincristine dose down to 50% for today, to help limit the side effects/toxicity.

That part was okay. Mollie has a port (Mediport) under her skin. It is basically an I.V. access device so she doesn't have to get a needle in her arm all the time. They can give the chemo through it and draw blood from it. So they accessed her port and drew blood for analysis. Her labs were fine. Her chemo infusion was fine.

After the chemo we had to go to nephrology for a follow up since they saw Mollie in the hospital last week because of her low sodium. We asked them if we really needed to do this since her labs were normal and the oncologists were following her closely- they said yes. We waited at least an hour to meet with a doc who told us what we already knew- her sodium and potassium levels were stable/normal and they want to follow up in a month.

All the while, Mollie was asking, approximately every 30-60 seconds, to go home or get something to eat. While we were waiting at nephrology, we ran into Dr. McD (one of the oncologists) who was surprised that Mollie still had to see the nephrologist. Mollie asked Dr. McD a bunch of questions and then dismissed her, saying "Okay, I'm done and I want you to leave now." That got back to the nurses at the oncology clinic and they loved it!!

In the last few days we have received packages from: Izzy C., Lala, Nea and Mike, Tracy and Aaron, and Cameron and Chris. Thank you!!

7.13.2008

The medical bills have started rolling in... adding to an already stressful situation. I am thankful that we have insurance but it certainly doesn't feel like enough.

At this point I know that talking to other parents who have been through this will be really helpful. That's my goal for this week and next week- contact the parents of some of the kids we've been following. Just reading their blogs has been tremendously helpful.

There's a cancer support group in our area (not specific to pediatrics) that I want to check out but I have to wait until Bio 101 is over because it meets at the same time as the class.

The plan for this week is chemo tomorrow and bone marrow aspirate/spinal tap/stitches out! on Thurs. Please keep your fingers crossed that everything goes according to schedule!
The moods are really hard to deal with. We have everything from happy to tired to sad to angry to goofy to sweet, all in the span of 30 minutes.

It affects all of us. It's hard to be all smile-y and happy around Lucy when Mollie is saying things like "I wonder if I wasn't sick." It's not that way ALL the time, and she's starting to come around.

This afternoon we took the picture with the bowl on her head. I don't know why, but she was feeling goofy, thought it was funny, and wanted a picture. With Lucy. This is progress. She's been ignoring Lucy for the last few weeks and this weekend she finally started warming up to her again.


Feeling sad...
happy...
mad...
totally miserable (with jaundice)...
and goofy...