Back in the hospital

Yesterday, Little One got a small fever that grew and grew. It was a scary night, but the fever has broken (although it fluctuates) and the specialists know what caused the fever and the problem is responding to antibiotics.

Again, please remember to donate blood if you are able. Many patients who are too young to be hurting need that gift of life.

I'm so grateful for all that everyone has done for our family. Kelly's friend let me use her NetBook for a couple weeks, and with this I am listening to Christmas music online. It feels nothing like Christmas, even with the decorations that the volunteers and nurses put up. But hopefully, next week we'll be able to get into the Christmas spirit. Kinda hard to do that when we can't go out in public (because of NO immunity). But, we'll make do.

Again, I got to see a family here, who are from back home. It was so nice to visit with them! So excited that everyone at home has the 6-7 inches of snow!

Do you ever feel like a country hick?

{gum ground at Josh & Kelly's school}

No, I did not say country chick, but rather country hick. Country chick sounds like some graceful country hottie, and I am neither graceful nor a hottie :)

The doctor gave me permission to go to the grocery store Saturday night. Right now, with the baby's low blood counts, it really can be life-threatening to go in public places. She said because I am here alone, I could go, but to "sanitize everything." So, the closest grocery store was medium-glitzy. We used to live in the "big city," but I don't remember ever feeling so out of place! It's nice to remember that we're 1 week into treatment, so there's 7 fewer days we'll need to be here (but that's not saying that here isn't nice too). I miss our nice, simple life back home...

Andy and the children all visited this weekend and just got back home. It was so good to see them after 2 weeks. The children were awestruck at getting to go to the arcade room, teen room, Internet room, etc. At home, they're almost always grounded from doing electronics, simply because I see a direct relationship between cranky, selfish behavior and electronic usage.

Plus, a volunteer group made dinner for the families here yesterday. Ham and all the fixin's. Today, a different volunteer group made dinner again. Again, it was ham because Christmas is coming. People are so kind to families in a tough situation. We have been given so much amazing support, from friends we know and friends we've never met. Thank you for helping when you've seen a need, whether it was for us or for others. I'm just awestruck.

Last week, I was watching the news and saw KOMO news in Seattle. They were doing special coverage of the memorial service for the officers killed in Lakewood. At one point, Dan Lewis commented, "What is this world coming to?" He was meaning all the awful, bad things that happen. At that moment though, I was surrounded by good things and people. All I could see was good. I know that those killings were tragic and horrific, and that childhood cancer is awful and unfair. But, so many people are making a point to do good things to spite the bad happenings.

In the past, my friend and I made quilts every year for a few years to keep the homeless in our community warmer on freezing nights. Where I am staying right now, there is a quilt room. People donate quilts so that whoever stays here gets to pick one to keep! Being a quilter (albeit decent at piecing, but not quilting), it was pure heaven just looking at the different fabrics, colors, patterns, etc. My children picked simpler fleece blankets that were tied on the edges. They were so excited to pick their own! That will help Josh, Lilly, and Maggie to feel more at home next week when they come to stay for the rest of the 5 months.

I now have my new computer! Does anyone know how to download all my purchases from iTunes that I can't access in the old computer? I only have been able to load the songs I had on the Shuffle, but I didn't have my entire music library on that.

npo

npo sucks - I'm sorry for saying that, but there's no other way to say it and mean it.

npo = no eating or drinking allowed (typically to prepare for a procedure with anesthesia)

When the patient is extremely hungry and irritable because of a certain therapeutic medication, npo does not help any...I'm getting a lot of walking in because the patient will only be happy when in the hospital stroller and walking around the floor. We do figure 8's over and over and over and over...

Good news/bad news
My friend's son had an injury yesterday that caused him to need more specialized care than what he could get at home. He was flown here last night, and I got to see my friend, her husband, and their son!! So, it was sad to see him be hurt, but awesome to taste just a little bit 'o home :)

My family will be visiting soon!!

codes

My friend, Kati, and her husband, Charles, were able to come visit for a bit earlier this week. They had arranged for Andy to come over the same day so that Andy could bring me the little car.

While visiting, Kati mentioned how sad it was when they were here (6 months a year or two ago) to hear "Code Blue" be announced on the intercom. We've been here for over a week now and hadn't heard the code...until this afternoon. The code was cancelled later on, but it took me back to when Daniel was 8.

At that time, we lived in a small house with a small yard. The street was a hill, so the children often wanted to ride their bikes in the flat yard. Just as often, I told the children not to ride in the yard because there was a 6-foot retaining wall to the yard below us.

One Monday, there was no school and the neighbor children were riding bikes with Daniel. Daniel had recently won a nice, sparkling, new bike, but he preferred to ride his old bike. Well, they were riding fast through the yard, and with the old bike, the chain came off. Daniel didn't know how to bail or jump off.

Daniel went over the 6-foot retaining wall, hitting the neighbor's carport support beams and then the neighbor's snowmobile or jet ski with his helmet. He was awake but hurt pretty bad. We ended up needing to call an ambulance because he lost ALL color in his face and lips. Plus, he was seeing a light then he passed out. I thought he was dead.

His injuries were all internal, just a very small scratch down his chest. The main injury was a ruptured liver, which caused him to have to lay still in the ICU for a week and not do any activities for 3 months. The liver "gelled" back to a healthy condition in that time. Daniel received a few units of blood to help stabilize his body from the internal bleeding.

So, anytime we see an ambulance now, it reminds us of Daniel's situation. We hear sirens and start silent prayers for the person(s) who are affected and hope they will have a good outcome. Today, I found out that code calls are just like a siren and elicit the same reflexive response.


Things are going well for the patient. More food intake, which is great. Some of the treatment causes hair loss in the next couple weeks, but it also causes a huge appetite. So, the baby is gaining weight! But, the flipside to that medication is also that it causes mood swings. So, all day today, if I'm not talking straight to the patient's face constantly, I'm hearing whining/crankiness. Walking around the floor with a stroller helps too. So, we're getting my exercise walking around and seeing the sights of the floor. It really helps to know that someday when the treatment is done, the baby's personality will change back to "normal."

We're getting closer to getting to leave the hospital and move into our temporary (6 month) home!

bubbles, a ball, and light sabers

Tonight, the patient got to be disconnected from an IV line for a few hours!! We got a playmat out and the patient just loved grabbing my hair, rolling the ball, playing with Josh's light saber, and watching bubbles.

I will know Thursday about living arrangements for the 6 month stay. Things are looking good.

Thanks to EVERYONE who is supporting our family, being so kind, and not listening to Andy and just helping when you see a need ;)

Many people have asked how they can help us. For now, things are mostly under control. One thing though, that would bless anyone in this situation is blood donation. If you can do it, I promise you it will bless many.

Also, a few months ago, I started looking for cute hats (kind of like snowboarders wear, knitted and with the long ears and ties hanging down) for the winter. I was looking for the 18 month size and didn't see any when I was Christmas shopping. In another month or so, we'll be needing to cover a little head. So, if you see one that is cute and soft, and doesn't feel like it would irritate sensitive skin, let me know!!

Hanging in there and giving away chocolate

We're hanging in here and are in very good hands.

My computer is fried, so I have to wait until there are a few spare minutes each day to run to the family area and use the common computers.

A lot of procedures have been done this week, and we are getting some answers. I am awaiting word, probably next week, about exactly how much I can blog about. Possibly I will be able to have a separate, private blog that can go into more detail.

The CURE rate is in the 90th percentile, so that is great news. But, that rate comes at a big price. One thing I will share is that half of my family will be away from home for 6 months. I can't comment on where we are, and if you know, please don't put it in the comments. Security purposes...

Andy is doing great at taking care of the children. He is taking the children to the mountain tomorrow morning to get a Christmas tree! I thought he would for sure give up the tradition in this difficult situation, but he felt it would be good for everyone to get our typical Charlie Brown tree.

Thanks to everyone who has supported our family through this.

The Ten Commandments giveaway had 4 entrants (my children wished they could, but they really don't need more chocolate, do they), and a random number generator online gave me 2 as the number between 1 and 4. BETHANY, I'll have Andy get those chocolate oranges to you!
Thanks to everyone who commented on that, helping me feel like I wasn't alone in not knowing each commandment word for work.

Leukemia

We're looking to know exactly what type it is tonight or tomorrow. I'll try to update more then.