Tuesday, February 22, 2011

Tuesday Update

So....temp went down at bedtime last night. Down to 98.5. This allowed us to rest a little easier knowing that we weren't heading to the ER in the middle of darkness. This morning she was 99.5. Little worse. She seemed just fine most of the day, which is a bit odd. The other kids were worn out from the fever, but their fever was higher too. I think her body is quite used to "fevering" and she also has that IVIG immunity booster running through her. (infused every month to protect her from things like this). The fever hovered in the 99's most of the day. Her treatment team would probably laugh at me if I called that a fever.

I felt kinda bad because she was well enough to do things around the house, but I kept her home from school. I just never know with her, so better to error on the side of caution. I am still not sure what tomorrow holds. If she stays home tomorrow, that will be a week off. I am done trying to guess what the illness is going to do to my family.

She is going on a ten day headache right now. Darn steroids do it everytime. And she is up mutliple times every night. The steroids make her unable to sleep. And hungry. Don't ever take a kid on steroids grocery shopping with you. Just don't do it.

So in her efforts to find something to do today...she decided to make a cake from scratch. I don't remember a time when I have even done this. I am a box cake girl at best. But she had a cookbook from her cooking camp last summer and made the whole thing herself. From scratch. Even the frosting was from scratch. It was tasty too. It made a giant mess of the kitchen, but kept her away from the TV for most of the day.

Ally and her chocolate cake and her crazy hair:
I know tons of people are sick right now. Just yucky. We need Spring soon!
PS Carly is feeling better with her ear.

- Posted using BlogPress from my iPhone

Monday, February 21, 2011

Tough Times

We have been having some really tough times around here. Evan and Carly have been sick for the better part of a week. They both had fever and a really bad croupy sounding cough. Actually, Evan has been sick four times since the beginning of the year. It makes me worry....even a seasoned veteran parent of a child with a long term illness can get worried. It just doesn't seem right to me. He does spend a lot of time wiggling his front tooth that is very loose. When he is at school, that just means germs...in his mouth. He seems to be getting better, but is still complaining about the ear infection he had two weeks ago.

Carly seemed to be doing better until today when she literally started screaming for 4 hours straight. Begging me to go to the doctor. We were at a movie at the time it hit. We ended up having to leave the movie and I took her straight to the doctor. Screaming. She has a double ear infection. She also had to have both ears flushed out as they were impacted. She doesn't even like it when you get a drop of water in her ears at bathtime. Holy cow. I swear I have never seen any of my kids in the type of screaming pain she was in today. Pain that won't go away. It was awful.

And Ally...she has been my trooper. Until tonight. Her fever just hit 100.1. At 101 we go to the ER. She gets hot because of her steroids. She hasn't been sleeping (also steroids). But I have a feeling that she is getting the virus now too. Poor girl. Except for her little body it is much harder to recover and also means port access, daily IV antibiotics, etc. Hoping you will say a prayer for her.

And my dog? That's a story for a different day. Because it is also making me sad and we don't have much time left.

I think we might have to reinstitute the bubble that we were in last year.
Or I may have to check myself into a psychiatric unit because I am just sitting right on the edge....

Will update tomorrow on what happens with Ally.

Monday, February 14, 2011

Happy Valentine's Day 2011.

Valentine's Day has rolled around again. Maybe Valentine's Day is a somewhat silly "hallmark" holiday for adults, but not kids. It is one of my favorite holidays with them...maybe even most favorite...(hmmmm...have to think about that.) It is such a great day to love on them extra and there is no stress around this holiday whatsoever (unlike the others). We always do a candlelit special dinner with red foods. It is fun. Heart shaped homemade pizza. Heart shaped pb&j's in their lunchbox. When I mentioned making heart shaped pancakes for breakfast....Jerad tells me to draw the line. We can't do heart shaped for breakfast, lunch, and dinner. I loved going into school today and seeing all the kids and all the festivities. Must be because I remember loving V-day as a kid (Thanks to my Mom...and my Dad who always got me a heart shaped box of candy)

More than anything, today I was remembering last year. One of the lower points of our journey. Ally was in so much pain last Feb 14th that she couldn't go to school, but wanted to pass out her Valentines. I ended up rolling her into school in a wheelchair. This is how it went:

It is not easy to forget the agony of that time. But it is very easy to be grateful for what we have now been blessed with.
My precious kiddo Evan who won this cute Hippo pair in the "claw machine" at a restaurant, but saved the prize for me by hiding it under his bed. He was so proud to have something for me. Guess I will sleep with it! And my sweet girls. I love them.
Jerad has a tradition of writing them each a letter on Valentine's Day. They wanted to read them at dinner. I had to stop them so I wouldn't cry! :)

And the medical update: Ally did fine at chemo. Dr. B was out of town, which rarely happens, so we saw Dr French. We hadn't been treated by him since the last time she was in the hospital, but sometimes it is nice to get a different view on things. He is also a great doctor. So I spoke to him all about the belly pain and the liver numbers....he seemed to think it was all the medications. Dr B had actually ordered her to be tested for a few viral things: Mono, Hepatitis, etc...but Dr French said he would be shocked if it were any of those things. I have yet to hear the results (they take a few days). On a positive note: her blood test numbers were the best I have seen in a long time. Hemoglobin above 12, Platelets above 325, and ANC at 1500. Just perfect. The liver numbers had gone down again, but they are still elevated. They test her AST/ALT and they are supposed to be between 0-45....one of hers is 250. But I believe it was close to 500 last month. Decreasing is good.
The chemo did not slow her down too much. Although having belly pain, she competed in her last swim meet of the winter. Taking another 4 seconds off her freestyle. She also raced in the 50yd backstroke.
Finally, I wanted to share one story from school. The guidance counselor stopped me in the hall the other day and told me that they had been speaking with the kids about courage. She said all the kids were sharing stories about how they had been brave. Some of the stories were somewhat laughable, typical of a 3rd grade student. Then she told me Ally raised her hand to say how she had courage. She just said "Cancer". And then they discussed Ally's bravery. And how Ally was different when she was in that wheelchair. And how people looked at her when she had no hair. And again, all I could do was stand there and cry. No words. Just a brief thank you while I swallowed the lump in my throat and realized yet again how our life will never be the same. The good and the bad. She is a special girl and she makes me proud to be her Mama.
Happy Valentine's Day. Go hug your family!

Wednesday, February 9, 2011

Ballerina Girl Pictures

I just wanted to post a quick update on Ally. Her stomach is STILL bothering her. I feel so bad for her. It just hurts and that is that and there is nothing much we can do about it. We try Prevacid, Zofran, Tums, etc but nothing seems to help her. We are going into the hospital on Friday, so I will discuss it again with Dr B. It has been hurting her since her last Spinal Tap on Dec 20th! Almost two months. It has impeded her ability to practice swimming, but I guess I can't get too hung up on that. She actually went on Monday night and did the whole practice! It just depends on the day. Her last meet is this weekend, so I guess we will be done anyway. Kinda excited about getting three nights back a week (from my selfish perspective anyway)

Evan has been playing basketball for the Future Stars. He really likes it. He is a non-aggressive kid, so that doesn't seem to help much, but he really does like it so I guess that is all that counts.

And Carly, well she is my dancer! The absolute highlight of her week is when she gets to go to her Creative Movement class at Bella Rosa Dance Academy. It is only a half hour class, but she just loves it. She knows all of her ballet positions now and tends to show them off around the house. She is constantly doing cheerleading dances for us too! So cute. Now she is working towards her recital which is in June.

I wanted to share one more story of how Ally's journey has changed someone. I have had the same babysitter for years, Jackie. She started babysitting for us when she was in high school. Now she has gone through nursing school and is getting her degree in that. She has done all kinds of clinical studies in different sections of the hospital etc. Well now it is her turn to do one at Dayton Children's. I believe they don't normally let the students on the Hem/Oncology Floor, for good reason, but she pleaded a case for it and told them about Ally. Thankfully, they allowed her to do it and she is now working on the 4th floor. She is meeting all of the nurses that we know and I am positive that she is making those kids happy up there. It is a tough place to work. It is sad. It takes a special person. Many of the nurses up there are deeply religious. I don't think this is a coincidence at all. You have to have a broader view of life to work up there... But anyway, Jackie told us that Ally's plight has led her to do this. Whether it is where she ends up or not....I am just proud of her for trying. Good luck Jackie.

Friday is chemo day. Pray for good counts for Ally yet again and that the liver numbers stay down. I hope her belly pain can be mitigated too. I am thinking that the pain could just be from 20 months of chemotherapy going through her little body. It has to take a toll.

Tuesday, February 1, 2011

Goodbye January!

Goodbye January. I am so glad to see you go. Although I may be a bit more "spoiled" or "normal" than I was last January, this January seemed a heck of a lot like 2010 from the perspective that I have barely left the confines of my house! This month alone we have had:
Belly Aches
Ear Infection
And the infamous high Liver levels.
Couple that with three or four snow days (maybe more tomorrow) and I am going batty. I even had my own minor surgery on Friday and followed that with my own minor fever yesterday. Sheesh.
We even had one desperate night of crying and considering a trip to the ER for Evan (that's the ear), but my nurse friend Lara came to my door and his rescue at 11pm at night in the middle of part one of the ice storm. In her PJs. (Gotta love friends like that.)

Just so not fun. I begged Jerad to get rid of my payroll tax/W-2 Filing job that is done from my home at 9pm at night most nights....and get a job that allows me to leave the confines of the house and enter into civilization.

It will all get better. When Spring hits. I just have to persevere as always.

Right before our ice storm hit, I took Ally out to get her liver panels done. I am pleased to say that her numbers are on their way downward. They are still high and still out of normal range, but they are on their way down which is good. They will test her again next week when she goes in for chemo. Her belly pain seems to have subsided. That is until last night when it crept back up on us. Only time will tell.
So we are in the midst of part two of an ice storm now. The newscasters are freaking out that we may lose power at any minute. I would love to be getting all that snow that my college roomies are getting up in Chicagoland, Michigan, and Wisconsin. Play in some snow for me girlies! Here are some icy pictures from today:

Found out we could sled down the driveway....
because the driveway looked like an ice rink:

and pretty soon I could no longer see out my windows. Which may not be such a bad thing.