We are back home!

Above its a picture of Hannah at the hospital playing dolls and dreaming of Rian's eggs!

We came back home last night. After five days in the hospital, it is nice to be here. Hannah was so happy to see her toys and brothers. I am so happy to have my tea this morning. Oh, and food!
Hannah tested positive for Clostridium difficile, or C. diff, which I can actually say. It is caused from either antibiotics or the chemo she is on. It is what was causing her fever, abdominal pains, and diarrhea. It doesn't explain her headache but that got better and her MRI came out good. The bummer was that we didn't find out about the C. diff until the last day. She had so many different tests trying to figure out what was wrong. She did a great job, though. I truly feel like she is amazing. She was very sick and in so much pain, but she is still just such a fighter. She doesn't complain, she might be a bit pissy at the staff, but I think they understand!
Thank you all for your nice emails and all the prayers. Thank you, God! I was praying hard. I was a bit worried this time.

May 25th update

I must apologize as I do not have Carrie's ability to lighten the mood and impact in passing on updates. Nor do I have her strength and focus to remember all of the medical and technical mumbo jumbo. Hannah was readmitted to Children's last night with a very high fever. They were able to get the fever down, but it resurfaced later. Hannah has had a terrible headache that is so severe she can not move her head. The doctors think it may be a form of meningitis or that the leukemia has made it's way into her spinal column, where it has not been seen previously. She is not responding to the current chemotherapy regimen, but is suffering from all of the side affects. Her test results have been mixed and somewhat confusing. Sorry that I am not better at sugar coating, but this is very hard for me. I have to just spit it out. I'm sure my accuracy in relating everything has been somewhat compromised by my emotions. I am constantly amazed at Carrie's fortitude, perseverance and composure. She is an incredible mother who is going to carry her daughter through this battle. Thank you all for your concern and support of Hannah and Carrie!

My baby is miseRAble

Wow! Last weekend was a piece of cake compared to this one. The anti-nausea medicine that was working so great last week is just not doing the trick right now. We are headed in today and hopefully they have some other additional options. She has a non stop brutal headache to go with the nausea and throwing up. She doesn't want to eat or play. Luckily, we just got some new books and she does like to hear stories. Quietly. No loud funny voices to go with these stories!

Back pokes are no fun

"Yesterday was a terrible day" says Hannah after I tell her I'm going to update her blog. She's right. Yesterday was really hard. We are just going to have some of those days.

Hannah had two types of chemo yesterday, one goes into her spinal column, which everyone calls back pokes, and one through her port. They did labs and her blood counts, red, platelet, and ANC (overall immunity numbers) are still pretty high even after a week of this new treatment. Her doctors said that they expect her numbers to drop dramatically for sure by the end of next week.

After two days off from Children's, she was a little apprehensive about going in. She had kind of a "Gggrrr" edge to her the whole morning. Then, sitting waiting for the doctors to be ready, they were forty minutes late, and having nothing to eat made it really hard for her to fight off the bad mood.

After her procedure she had to go to the transfusion room for her second chemo and that was her last straw. She just lost it. Kicking and yelling for around 20 minutes. I held her on my lap and let her kick in the air and yell for awhile. I felt like she needed to get it out. I would be pretty mad too. After that we watched Peter Pan until her chemo was done. We got to go home and she feel asleep. Because of the reaction she had after anaesthesia they instructed me to bring her back if she stayed asleep too long. I think she had just worn herself out. She only slept an hour.

Later at home, she went to the bathroom and didn't come right back out. She was sitting on the bath mat sobbing. She said that it is not fair they poke her every time in the back when she is asleep. The loss of control and the fact that what is happening to her actually hurts, is so hard. I need to find away for her to some control of the back pokes. We have so many more of them. Every Friday for the foreseeable future. Any suggestions?

Two Day Break!!

Yeah baby! With the first five days of the new chemo behind us, we get to have two days off from Children's until we have to go back again Friday for another spinal procedure. The new chemo is an adjustment, but it went better than I thought. She has lots of ups and downs still from coming off the steroid treatment and her energy levels are bizarre. Around eight at night now she has a burst of energy till about ten. However, sometimes during the day she will be talking to you and fall asleep mid-sentence! The nurses gave me a trick for helping with nausea. If I give her the meds every eight hours instead of them giving her a dose at treatment time then we can stay ahead of her getting to sick. It really works!

Oh, I also have a thank god moment! The spinal procedure on Fridays require Hannah not to eat all day. It is so hard on Hannah and getting a morning appointment is impossible. They only have an anaesthesiologist in the morning and afternoon. Plus, they can only do so many of these appointments in a day. Since babies get the first appointments, you have to schedule MONTHS ahead to get the morning spot, or know some people in low places who would be willing to bump a baby for you. (just kidding). We found out last week she will have this procedure every Friday for the next two months. Dread. I prayed like crazy for the impossible, morning appointments, or at least early afternoon.
Our scheduler dropped off the itinerary on Monday. All morning appointments!!!! Every single one. One more time, Yeah baby!(by the way, yeah baby, is Hannah's favortie saying, which is funnier in the tone she uses)

Our Chemotastic Weekend

Hannah had chemo every day this weekend starting with Friday and will go through Tuesday. It is going be the same for this up coming week as well. I now also have a chemo pill to give her every night that requires me to have gloves and a whole special set up. Our med list is ridiculous, I have become a pharmacist!

Friday's chemo was in the spinal column and under anesthesia. Saturday's treatment was through her port and was six hours! All I can say is thank god for Aqua Sand. This is a strange and amazing, colored sand product that you use in water. It is mailable in water and completely dry when it hits air. All the nurses stopped by our room to play! She sat in her recliner chair in the hospital getting chemo and played non stop with this stuff for 3 hours. It also kept her entertained for Sunday's chemo treatment as well. So, a big thank you to Laurie, Crystal, and Danielle from Holaday Parks for getting that for her!

As far as how she is doing with the new chemo, Friday afternoon was really the worst of it. She was screaming and throwing things one minute and crying and wanting hugs the next. I didn't know if it was a bad day or how every day on this leg of the treatment would be. Thankfully, the rest of the weekend was easier emotionally for her.

She is off the steroid treatment now and on to four different types of chemo that all have the side effects of loss of appetite, nausea, and tiredness. We literally went from Saturday morning where I was very worried I hadn't packed enough food (there was enough for three grown adults) to Saturday evening where I couldn't convince her to eat. Sunday she woke up very nauseous but luckily the medicine they have for that is really good. Her hair is starting to fall out, I find it everywhere. It reminds me that we are going to need to go hat shopping!

Other than those new side effects, Hannah is holding up great. Our friend, Tammy, had the boys this weekend, thank you Tammy, and Hannah was really excited to see her brothers on Sunday. With all that excitement she fell asleep pretty early and I am heading there too cause tomorrow is another fantastic day at Children's. Hope you all had a great weekend!.

Hannah & Rian

We started our day with rice and sausage (soy sauce) and clearly there wasn't enough sausage in it. Of course we had to have seconds because who can eat just one heaping bowl of rice and sausage?
We decided to spend our time watching the squeaquel (aka Chipmunks 2) and writing our alphabet letters in her new book, I got the purple pen (my favorite!!). I thought it was the beginning of an earthquake, then Hannah's stomach quit growling, I waited a bit then felt it safe to climb out from under the table. She likes Nori (dried seaweed sheets, yum, tastes like it sounds). 9 glasses of OJ later I found myself in the fridge looking for the other container of OJ in an attempt to sate her unquenchable thirst.
We...er, I mean she, played Barbie's, drove them around in their car, and partied by the pool where they danced and sang all night long. Since we were on a roll we stopped off at Lego land and destroyed the boy's room, put the Lego girl's hair on boys and vice versa (I don't know where she gets it), but we giggled and had fun anyway.
There I was watching iCarly, minding my own business might I add, when all of a sudden I got blasted in the head from behind. I was in shock, utterly speechless, somebody had to pay for this egregious act of violence...so I grabbed my own pillow and we had a pillow fight for the ages, the earth shook and teeth were rattled, a hole was rent in the fabric of time and I took that 4 year old to task, stories will be told of the legendary battle. Luckily we made a truce for lunch with fish sticks and chicken nuggets, more OJ, and a bit of shennanigans thrown in.
Medicine was a snap and right on time. We were just about to start another round of who knows what (also one of my favorites) when a crazy walked right through the front door, I was about to launch an offensive when Hannah walked calmly up to her Mom and gave her a hug. I didn't realize the time had flown by and the day was gone. We came, we saw, & we conquered. Sleep well Hannah, I had fun.

Rian Davis

Words of Wisdom from my boss

My boss, John, one of the finest people you could ever hope to meet, always tells me "Don't let the highs get you too high, and don't let the lows get you too low". Now, I know that he is referring to work when he tells me this, but it has been bouncing around my brain the last few days. I feel it applies. The test results are going to just be what they are and I'm not going to let it get me too low.

Hannah woke up today, got out of bed and fell right down. Her legs hurt her too bad to stand on them. She fell two more times just in the morning. However, she is not a complainer. She just says to me that her legs won't let her walk. This doesn't mean she is going to stop trying, because darn it, she wants to walk on her own and not be carried anymore.

People keep telling me that she is such a fighter and so tough. I agree but I also always thought, "Yes, but she is just four". I think I get it now.

Anyway, I went to work today and Rian stayed with Hannah. Apparently, they played quite a bit, Barbie's, Lego's, coloring, movies and ate quite a bit (she is still on the steriod treatment). I asked him to write something for the blog about his day with her. So, my next post is actually Rian's.

Test Results

Not quite what I was hoping to be typing. She did not make it into first remission. She still has some Leukemia cells left. Apparently, most kids have none at this point, 95% of them.

She is going to start a high intensity treatment plan this Friday. I am sure there is more say about it, but I can't think of anything right now.

Thank you all for your prayers.

Patience is NOT a Virtue!

One of our Doctors got sick today so they moved our appointment to 3:45pm today. At first I was feeling ok about the wait and now...

AAAAaaaahhhhhh!

Some good news

We didn't have to be admitted. So far, the test didn't come up with any infection in her blood. Yes!

Tomorrow at 10am is the big news. It will be the results of the bone marrow test they did on Friday. Please, pray for her to be under 1% of Leukemia cells left in her body. That would mean she is in first remission and we have a good chance of making it. Over 1% will be a whole new game plan. I am crazy nervous.

Happy Mother's Day!

Happy Mother's day to all the mom's! (Day late, I know)
Hannah and I spent Mother's Day at the ER in Children's Hospital. I noticed early Sunday that at her port site, at each spot they had put in a needle, was red. I called her doctor and it turns out, she has a bacterial infection. They had to draw blood to find out if it was in her blood stream. They couldn't draw blood through the port though, because if the infection is just topical they don't want to push it into the port! So, they had to put an IV in her hand. Wow. That was very difficult. It took three grown adults to hold her down.
They gave her a dose of antibiotics through her IV and we go back in today to find out if the infection is in her blood stream. If it is, they will admit us. If not we can treat the infection with over the counter antibiotics at home. I am trying to pack for either case, but I just keep thinking how much I will have to unpack if we come back home today!
Anyway, I was thinking yesterday that it was a true, Day of a Mother! :-) Hope you all had a good one.

I have a request

Every time we go to the hospital they have to access her port. Button down shirts make this a much easier situation. I can't find any! Ok, I have found two (we go almost every day) but they are pretty ugly and not very soft. If anyone could find some button down shirts for Hannah that are even kinda cute, Hannah and I would be very grateful! Thank you!!

Tuesday 5-4-2010

Hannah did fabulous at the doctor's today. She is such a funny girl. We have the hospital routine down to the steps in takes to get in the door it seems. So today, we are in the waiting room when Hannah see the nurse and says "Now, we go to the little room and it's blood pressure and weight, right?" Crazy! She is four!

It is also funny to watch her interact with new nurses or doctors. She is rightly anxious about what they are doing, trust me they have done so many painful things, it just comes with the territory. Everytime, they want to distract her from what they are doing by asking her silly questions in high pitch voices. Like "Do you have a dog?" or "Wow, is that a princess on TV?". Oh man. Hannah is no fool. She knows very well that this "small talk" means bad things are going to happen. She just yells "NO!" now when they try to do that. Of course, that is my step in moment where I tell them she would rather be told exactly what is going on. She even likes to push the medicine syringe into the tube to her port herself. I swear one day she is going to grow up to be a doctor!

Update for Saturday

Wow! Long day so far. All week her red blood cells danced around at 21%. If they hit 20% she has to have a transfusion. We came in almost every day with the anticipation that we would need more red blood. Well, today was that day. The transfusion takes four hours plus one hour set up time. That is quite a long time to sit in a chair with your bored four year old. That said, she did great. We have been given lots of sit down activities from friends and I brought a ton of food. Plus, they had Aladdin to watch. Princess Jasmine is her favorite.
My favorite moment was when the nurse brought me coffee. She had just explained to Hannah that the red blood cells would help her feel better and give her more energy. When my coffee came Hannah asked the nurse if that's what mommy's get to feel better.