Monday, July 27, 2009

Clinic Chronicles: Interim Maintenance, Day 20

Intro to Clinic:

Assembling the Clinic Bag.

We're usually in and out of clinic in about 2-2.5 hours, but sometimes things can take a little longer, and if she happens to need platelets or red blood cells it could take all day. I restock the clinic bag before every appointment trying to change up the goodies so she won't get bored. Sometimes when I am feeling like a goody-two-shoes I restock it a few days early, but most days I do it the morning of the appointment in a bit of a rush.

She goes through books like crazy, many times because she wants to go on to the next one before we're finished with the current one. Luckily they stock some in the patient rooms, and have a cart of books that is donated by customers of Half Price Books.

Snacks. When the visits get to be 3 - 4 long hours we get a little hungry. The clinic does provide snacks if you ask, and they always give her something on days when she has a procedure (i.e. lumbar puncture or marrow biopsy). There is no eating or drinking in the waiting room because there are always some children who are NPO (no eating or drinking) before their procedures. I am very thankful for this rule on days when she is NPO.

The portable DVD player - this has paid for itself many times over in terms of sheer enjoyment while she was inpatient and especially during ER visits. I take it to clinic now just in case we have an especially long wait in the patient rooms. On procedure days there is a DVD player in the treatment room and a personal DVD player on every chair/bed in the recovery room.

We take these everywhere. And we wipe down everything.

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LMX cream.

I apply this numbing cream to Maren's port site in the van when we get to the hospital.

The bib for the ride home - just in case she isn't feeling well. She has only thrown up twice over the past 3 months, so we may not need this too much and that is a very good thing!

The to-go drinks. We would probably both be pretty cranky without them.

About 80 pounds later - the assembled clinic bag. Yay.

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Waking up Miss Maren

She's practically jumping out of bed to go see Dr. Randy and Whitney (the PA). Or maybe it's because we don't get out too much and she's just happy to go somewhere. =).

Note: You may want to pause the music on the playlist (above and to the right) to watch the video.

Strapped in and ready to go.

The brief nature trail before we hit an industrial road (I'll spare you those pics).

My kids call this the Allegheny Ocean. Funny and sad.

Jeremy says it's not even the Allegheny. Even funnier.

The new hospital. Ain't she a beauty?Posted by Picasa
Only 35 minutes after we pull out of the driveway, we get a buzzer in the waiting room at 5 minutes to 9.

Vitals Room with nurse Crystal. She was 33 lbs. and 36 inches yesterday. Posted by Picasa

In the patient room.

Nice view.

Maren's port is accesed by the nurse and labs are drawn. Her blood is checked every week to make sure her immune system is strong enough for the chemo, and to check for Leukemia blasts in the blood. Platelet levels and red blood cells are also counted in case they need to be replenished through a transfusion.

We wait in the playroom for Dr. Randy to come by with the lab results and do an exam.Posted by Picasa

Maren gets vincrsitine through her port.

Her labs revealed that her ANC (absolute neutrophil count) is only 600. Under 1,000 means there is a high risk of infection, and under 500 will mean an automatic inpatient stay if she gets a fever. She needs to have an ANC of 1000 to get her methotrexate during this cycle, so that was a no go. Not to worry, that's pretty standard in this cycle, and it's not something she has to make-up later.

We make her appointment for a lumbar puncture next week, and we punch out of the parking garage at 10:57. Not bad.

Our post-clinic tradition. Always to-go unless she happens to have a particularly high ANC.

One clinic visit closer to the finish line. Posted by Picasa

Saturday, July 25, 2009

Dream Night at the Zoo

We attended our first official event with the Leukemia and Lymphoma Society last night - Dream Night at the Zoo. Elijah and Maren were talking about it constantly for at least four hours before it started, and they were not disappointed. For the most part the animals were out and active, and zoo gave out free glow sticks, cotton candy, and little talking animal heads. What could be better? Maren had to wear her mask most of the time, and even though I think it makes it more difficult to breathe, she didn't let it slow her down. Posted by Picasa

By the way, Maren's band-aids are just a fashion statement here. She got so used to having her fingers all wrapped in band-aids when she had steroid-induced diabetes during Induction that she thinks they're like stickers. Fortunately, she has a huge supply from all the caring people that sent them to her. We are hoping that she wont need them for the next of phase of chemo in September when she gets the steroids again, but we'll just have to wait and see. Posted by Picasa

Thursday, July 23, 2009

Girl on the move


for the first time in 2.5 months.

Woo Hoo! Hooray for Interim Maintenance. Maren is just about 1/2 way through her third phase of chemo, and we are so happy to say that she is doing great. Overall she has more good days than bad days, and she definitely has more energy than I do. We just hope this continues for the next month. Her doses of chemo increase each time she goes, and her immunities are expected to drop drastically by the third(her third will be Monday morning) or fourth dose of vincristine and methotrexate, so please pray that she will be able to fight off any infections that may come her way. We are so thankful for every day that she is not in the hospital. Posted by Picasa

Life is good.

She is truly the funniest baby I have ever known.

And yes . . . .

We still call her Baby.

She thinks it's her name. Posted by Picasa

In the meantime

We have been trying to keep ourselves busy by doing "normal" activities.

I know the picture is misleading, but it was I who turned 30 - not Miss Maren (although she does like to think she's always the birthday girl). This is not quite how I expected life to look at 30, but I have certainly learned to appreciate the unexpected.

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