Friday, March 28, 2008

FInally going home...

7 pm
They are headed home. And all are collapsing in bed.

New tests were ordered. We'll hear more on Monday.

I am exhausted. Once I get Miss CC away from watching Enchanted (again), I will take a hot bath and head to bed, too.


Crying in Costco

Well, I was right. I think I was in shock or something because today as I was buying flowers and food (did I mention I'm hosting a baby shower tomorrow in the midst of all this chaos?) at Costco, I started bawling.

Just all of a sudden I thought of R lying there in that bed with her sweet face, and I lost it.

It still feels like she is in danger somehow to me. I don't know why. Maybe because I was secretly scared she had leukemia for a week before they took her to the doctor. Maybe because I don't always trust doctors. They've been wrong about my own medical conditions in the past. Maybe I won't relax until she is home safe and sound.

Hopefully soon she will be at my house playing with her 4-year-old auntie and her 39-year-old grandma and it will be "normal" again. We are a different sort of family I know, but we are a family nonetheless.

My stepdaughter's mom and my son-in-law's parents arrived early this morning so I've let them all be together at hospital today. Miss R needed all her grandparents. It worked out as I needed to have a meltdown at Costco!

Thanks again to all the support. Usually I am the one giving it and it felt good to receive some of it.

Thursday, March 27, 2008


You read that right. Not a cancer cell in sight!

But first, the story of the day...

Miss R was the cutest thing this morning. We had been warned about all sort of unusual or scary behavior once she was given the meds for the biopsy. Instead she starting spinning her head and giggling and saying, "I'm so silly! I'm dizzy! This is fuuuuun!" So precious.

And then afterward never nauseous, never in pain. Suddenly demanding lunch and laughing. This child is amazing. I know everyone says that, but it really it so.

I mean we're talking about a 2 1/2 year child. One willing to have her blood drawn and her blood pressure taken. A child so amazing that the nurses went in together and bought her balloons and a teddybear.

So tonight the doctors finally came in. No cancer cells. They even saw evidence of her body beginning to create red blood cells on its own. Not a lot. Not enough to be out of the woods yet. But the huge looming threat of the big C word has past.

Then what is it? THEY DON'T KNOW! How infuriating is that? They've determined not flu and not mono. So it must be some other sort of random virus that knocked poor Miss R on her booty. There is some thought it might be Fifth's Disease, which usually is not this extreme. But they've seen a few cases this year like this in the past year.

So tomorrow that they will check her blood counts again. If still low, she will have to do another transfusion. But if rising on its own, she might get to go home!!!! YAY!

I still feel a little in shock. I have stayed strong all week. I have this strange feeling that if I think about it too much, I might lose it. Kind of a delayed reaction.

Thank you so much to the Queen of Shake Shake for mentioning my blog and sending me so many well-wishers. Really made me feel better. Thank you so much! Thank you, lurkers! I'd love for you to hang out with me awhile if you like.

More tomorrow on how my Miss CC is handling all the drama and trauma. You might be surprised.

Wednesday, March 26, 2008

another hard day...

Somehow I am the caretaker of my family. Even my extended family. Even my step-family, you know? It feels good I will admit. It give me purpose. Being helpful is a tiny silver lining in this nightmare.

Miss R is not great. All three types of blood cells dropped considerably today. She will have to undergo a bone marrow biopsy tomorrow morning. Because it is a very painful procedure, she will be sedated.

There is still a chance this is still a random, freaky virus causing this. But most of the virus tests are back and they are negative. (mono, flu) So it is beginning to point toward, dare I say it? The possibility of leukemia or some other cancer. The doctors are throwing it around like such a big possibility. So hard to hear.

Tonight she underwent a blood transfusion. They decided to divide it up into 3 separate sections with breaks in between for her body to recover. She had no negative reaction and was a perfect patient. The nurses are besides themselves at what a great patient she is for a 2-year-old! She has to hold her arm straight and steady and was willing to do this! When I left, she was still receiving the last part of the first of the 3 portions and already was pinking up and regaining her color. So good! She was in good spirits and CC kept her entertained as well. She has been remarkably maternal toward her. Another positive piece of news is that usually leukemia presents with a rash on hands or feet and she has not had a rash of any kind! They did discover she has a urinary tract infection which should not be causing this problem but is an added issue. In between the transfusions, she will receive antibiotics for that. The biopsy has been scheduled for 10 am tomorrow (Thurs). However, they will not hear any results until the end of the day.

Again, she is not in any pain. Only a tad annoyed she must stay in bed during the transfusion. She did finally get a good two-hour nap in today (which she did not yesterday) so they are glad she got that rest as they will have to wake her up quite a bit during night to check the transfusion. We encouraged her dad to go home and get some sleep after dinner. Her mom is staying the night and did receive a cot. I brought her a warm, soft blanket so hopefully she will get some sleep tonight. They both continue to be strong but have moments of losing it as anyone would.

Tomorrow will be a long day.

Thank you so much for positive thoughts and love.

Tuesday, March 25, 2008

Well, good times didn't last long...

We need some prayers and positive thoughts our way if you are so inclined. We have been at our local children's hospital today with our granddaughter Miss R. She has been sick for a week and because she got so pale during Easter festivities, they took her in for a blood test.

Her hemoglobin count was so low, they were advised to go directly to emergency room. They have done tests all day and most likely she will undergo a blood transfusion tomorrow. They are hopeful they can rule out leukemia (!!!) but right now we are just in a waiting game.

The best case scenario is that some sort of virus caused the drop and her body is still capable of creating new cells. Of course we are all scared as the doctors are quite concerned. She is not in any pain and is smiling and eating (good sign!), although you can imagine putting an IV in a two-year-old.

Miss CC was absolutely wonderful with her putting her arm around her and taking care of her. This is major as hospitals are notoriously too loud and too many people for her to be able to relax. I was incredibly proud of her.

It was hard to see such a little one so pale and hooked up to machines. Her parents are both with her and were able to take off work today and as many days as needed going forward and are staying in room with her. They seem to be handling everything with strength. What else can you do?

Mr. C leaves tomorrow for NY so I will go back to hospital tomorrow while CC is in school.

A very hard day here, folks.

Monday, March 24, 2008

Easter week musings

This was a good week. Yes, there were some low points - we can't find Miss CC's beloved teddy bear, she constantly insists she is "boss of our house" and acts as such and I haven't slept in weeks, BUT there was also so much joy.

Easter is fun. It was never a huge holiday for me growing up, but since becoming a mom, every holiday takes on such a level of importance for me. I find the business of ensuring my baby has lovely happy memories a full-time job. And to be honest, I have grown to love the creativity of decorating for each holiday and finding new, inventive ways to celebrate.

Seeing little girls all dressed up for Easter and running across the grass to find Easter eggs. There is nothing like it.

We attended 3 egg hunts this week - two amazing ones at friends' home and a third one on a golf course. Miss CC was quite competitive at all of them and each time happily came home with her basket FULL. (gotta figure out a way to sneak out all the candy around here by the way)

We also had our granddaughter (I have an adult stepdaughter) Little Miss R with us for most of the events. She is 2 1/2 and she adores her "auntie" Miss CC who is 4 1/2. They are precious together. More like sisters.

So I sound like a sap. I don't care. I guess I'm sort of in love with my two girls. They are so precious - so beautiful and so smart and so different from one another.

And these are the years the children enjoy Easter. I don't see a lot of older kids looking for eggs, you know? So now at 2 1/2 and 4 1/ is perfect.

I try not to take a moment for granted.

Wednesday, March 19, 2008

I'm back!

So I say I want to write.
And then I hit a major writer's block.
But then I unexpectedly went to Hawaii with my family and another family and got a little sunshine and felt better.
My daughter's best friend (yes, a boy!) was there and seeing the two of them play together was such a lovely thing. They adore each other. They were adventurers together - stalking and capturing lizards. And when they walked around together, they proclaimed, "Here come the troublemakers"!
They did spar a few times, but they always made up. I love to see them together because they play appropriately (even appropriate pushing each other occasionally). And it's interesting to see them interact. Miss CC often "mothers" her buddy, too. "It'll be okay, Sweetie," she soothes him when he is sad.
She does not do this with other children.
She gravatates toward adults rather than children. So it nice to see her love a peer like this.

Of course protective dad gets uncomfortable sometimes. Miss CC and her buddy are quite loving with one another including hugs and wiggling noses. Daddy doesn't like this one bit.

So once again I'm caught between taking care of my daughter and placating Mr. C. A trip to Hawaii didn't change that unfortunately.