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!


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.


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.


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!


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.


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!