PICU

On Saturday afternoon October 29 Abigail was with us at her brother Nate's last football game.

She was really fussy and grouchy so we could not wait to get her home to bed. When she finally got up from her nap around 4:30 she was a basket case. Her ANC on the previous Thursday had only been 400 and she had a cold so I was concerned. I know the drill, so I packed a small suitcase and took her to the ER at the childrens hospital. She didn't have a fever when we left, but it was 101.4 when we arrived. One positive thing about cancer is that they don't make you wait long in the ER. She was evaluated almost immediately and what they found was shocking--she couldn't breathe. Her oxygen saturation was in the low 80's. The scary part was that they were having a hard time bringing her oxygen up. She ended up on "forced oxygen" which forces the air into your lungs to open them. As a result she ended up being admitted to the PICU--pediatric intensive care unit. The PICU scared me for a lot of reasons. The biggest one is that cancer patients usually go there to die. I was begging the whole time to get out and up to the cancer unit. It took a full 24 hours but she was finally weaned onto a low enough dose of forced oxygen that we could go there. We almost had to return to PICU but we prayed really hard and got to stay. One of her brothers and her older sister got to visit her there.

She was in the hospital for almost a week which meant that she was there for Halloween. We brought up her costume and she wore it all day while the staff did "reverse trick or treating" to her. Here she is picutred with our favorite "super nurse". She came home on oxygen and had to stay on it for a whole week. Luckily the oxygen company gave us a 25 foot cord so she could run around and play. We are happy that she is home again.

Tricks

With Abigail we stayed home most of her Induction (1st treatment phase of Leukemia). Her numbers made her susceptible to all kinds of illness and infection that month. Natasha has been different. While equally sick and grumpy, she has had great numbers. As parents we have learned that our girls need time outside of the house to keep them sane. Our trick in October was to find ways and places to keep them happy. Halloween offered us some great outlets for them. We attended a party at church and a party through the Make-a-Wish organization. Both were so nice because we there were activities for all of our 7 kids. The favorite activity by far was decorating and eating cupcakes. The funny part is that Natasha cried and whined through both events, but then screamed when we pulled into the driveway. She wants to be home least of all. At least our little princesses had a chance to get out and enjoy the holiday.

Gone

It took about a week and a half, but Natasha's hair is now pretty much gone. I think it was actually harder for us to shave her hair than Abigail's because she looooooved to play with it. Her hair was a huge comfort to her. If you doubt that, just look at the photos.

Having gone through this before I thought the shock of seeing her bald and moon faced from the steroids would be gone. Funny that it's not. It is just as hard to see her go through this as it was for Abigail. The difference this time is that I am educated. I know what I can reasonably expect and I understand now everything the doctors tell me even if I am sleep-deprived. It's remarkable what a difference education and experience make emotionally. Just today I spotted the start of thrush in the back of Natasha's throat when she was crying. Her meds are just waiting to be picked up at the pharmacy. Abigail had thrush for days before we recognized it. How grateful I am for Tasha's sake that Abigail was such a good pioneer.

Demodex

This is my new hated word. Actually the whole term is demodex folliculitis. It took us 2 months to finally discover what it was and we have been treating it for 2 months. It is found in individuals with compromised immune systems for long periods of time. ALL leukemia is one of its favorite targets. It is the normal mites that hang out on your skin attacking you. It's itchy and uncomfortable but she complains very little. The first picture is Abigail holding my little niece London. The second picture is psycho I know, but it shows her eye issues. For months she kept getting massive amounts of stys on her lower left and upper rt. eyes. Eventually we had them surgically removed but it has been challenging to keep them away.

Luckily the folliculitis is better. I don't know if and when we can get it to go away but it has never looked this bad since we started. So now that I am hoping to post more I just want to explain Abigails skin so it doesn't look like she has recently started puberty ;)