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.


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.


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.


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!!