A Witch on Steroids

Again, I have no pictures of Hannah's appointment on Friday. She is still having a hard time being at the hospital these days. A sweet friend, who had personal experiences of this, told me that it is normal for Hannah to get fed up with everything. A couple of the nurses agreed that kids seem to go through phases when they can handle it better and times when they can't. It helps to know that this is normal and that she will hopefully get to where she can be happier at the hospital again.

Besides her being extra tired, having sore throats, upset stomachs and leg pains, she has handled this new chemo well. We get this week off (which always seems like the best, longest vacation when we don't have to go for a week!) The doctors were able to move her next appointment until after Eric's brother's wedding next weekend. We are very thankful for that and hope that Hannah can feel good for it. The next appointment is when it is supposed to get rough for her. She will have two new chemos that the docs say will make her sick. Please keep praying that she can handle these new chemos well. We have been truly amazed at how well she has done so far -- many answered prayers!

Hannah chose to be a witch for Halloween this year. I thought that was a perfect choice because:
1. Lauren wore this costume two years ago and there's nothing better than hand-me-downs.
2. Hannah is on steroids and so she is easily able to play the part!

This picture is my attempt to capture the essence of our Halloween this year. The witch hat that goes with the costume was thrown across the room moments before she flung herself onto the floor, refusing to pose for the picture.

(Please don't think that I'm cruel to be laughing about all of this - in the title of this post and by taking pictures of her being upset. There has to be some humor in all of this mess! I really think that when this is all over and she gets older, she will laugh about it too.)

No Pictures

I don't have any pictures from Hannah's appointment on Friday. She had an extra hard time being there this week. She even started crying as soon as we stepped off the elevator (she has never been like that). I don't know why she is so upset about her appointments these days. It seems like she had gotten used to them and had been doing well before these last couple of weeks. Maybe she is fed up with this whole deal of having to keep going to the hospital. I wish I could get into her little mind to understand.

On a happier note, she is feeling better this week than she did last week. It is wonderful to see her happy and playing. Her doctors have said that the second half of this phase will be worse than the first. We are thankful that the entire phase isn't too hard on her and are thankful for every good day that she has!

Unpredictable Days

Hannah had another appointment yesterday. She had an IV chemo that was given slowly so it took a long time. Then they wanted to watch her for an hour to make sure she didn't have an allergic reaction to it (which is common with this type of chemo). We were very thankful that her body didn't react to it! We were on the infusion side of the clinic where each patient is separated only by curtains. I felt sorry for the other patients, parents and nurses having to hear Hannah's steroid rage. You can see by her expressions that she is not having a good time.

Kids are truly amazing! Hannah's not feeling well seems to come and go in waves. She will cry and sit in my lap, saying that her stomach hurts. Then twenty minutes later she is up, playing and happy. The same goes with her moodiness due to the steroids. She can be her normal, happy self and then it is like a switch is flipped and she is angry and miserable. I believe that if my body was going through all of this I would probably be in the bed complaining and moody ALL the time! I guess grown-ups know too much. Not understanding everything that is going on must help kids deal with this sort of thing better.

Start of Phase 4

Hannah had an appointment on Thursday for an Echocardiogram. The chemo that she is starting this phase has the potential to damage her heart muscle so she will have an Echo every year from now on to keep an eye on it. She did not enjoy having to lie still for over 30 minutes for this procedure. We (including the tech that did it) were very glad to finish!

The hospital had a Fall Festival on Thursday afternoon in the garden on the hospital grounds. There were crafts, games, music, bubbles and toys. Many of the patients staying in the hospital were brought out and you could tell that they had a great time.

This hospital has the most wonderful volunteers. One of the kids' favorites is the Fairy Godmother. She is so sweet and genuinely loves the children.

An anonymous donor donated 100 tickets to the cancer center at the hospital for the Disney on Ice show at Philips Arena. They offered us tickets and we were thrilled! Lauren's cousin, Ava, and my mom were able to come with us. The girls LOVED it! Here is a picture a few minutes before the show started.

Hannah had a hard time during her appointment on Friday. She had to have another lumbar puncture where they put her to sleep and two chemos through IV. She seemed to be afraid of the sedation process (even though she's had it many times now) and kicked and screamed at everything the nurses and doctors tried to do. The nurses said that it is common for kids not to do well after having a break from coming to the hospital. Since we haven't had to go there for the last two weeks, I guess it all felt a little new again for her.

One of the new chemos for this phase is red in color. I don't understand medically how this happens, but the docs say that while Hannah is on it, it will cause her sweat, tears, saliva and urine to be red. Her docs say that kids think this is interesting.

She also started back on steroids, so here we go again with the never satisfied hunger and terrible mood swings. Her personality changes so much while on steroids that it sometimes feels like we are babysitting someone else's child (who is not at all pleasant to be around). Please pray for patience for us for the next few weeks! We leave again today (Sunday) for another appointment in the morning.

Light the Night

On Thursday we went to the Light the Night walk in Dothan which is a fundraiser for the Leukemia and Lymphoma Society. This was the first year it has been held in Dothan. There was an amazing turnout of over 800 people. It was wonderful to see how many people care about this cause and encouraging to see all of the survivors there. We also had a good turnout for our "Hope for Hannah" team.

A few months ago Hannah was named Honorary Miss Twilight at the Twilight Pageant (which also benefits the Leukemia and Lymphoma Society) in Dothan. I didn't get any pictures that day or I would have posted them on this blog. At the walk they recognized her on stage. You can see from this picture how thrilled she was to be the center of attention. She would have stood up there all night with people taking pictures of her if we had let her!

Thank you, Angie Adams (the director of the walk and pageant), for including us in these events and for all you do in working to raise money to find a cure!

End of Phase 3!

Friday was the last day of Hannah's treatments for Phase 3. These phases seem to be going by quickly. She did well at the long appointment. She received the same types of chemo that she has had this phase, just stronger doses. On the way home she always asks if that was the last time she has to go to the hospital. When we tell her no, that is not the last time, she asks how many more times she will have to go. How do you explain to a three-year-old that it will be another two years?

Hannah's Gam won Braves tickets from her work, so we were able to go to the game on Thursday night. The kids only lasted four innings and were restless and ready to leave, but they did enjoy seeing the field and players.

From our experience, three kids in a queen size hotel bed does not equal a good night's sleep for anyone (including people in the next rooms). So, Hannah was the smallest and got the boot. We wedged two of these big, heavy chairs together between a dresser and table so that they wouldn't slide apart during the night and they made the perfect bed for her!

The next phase will start at the end of next week and will probably be the worst for Hannah. She will have seven different kinds of chemo over the course of the phase and will start steroids again. Please pray that her body will handle this next phase well and that she will continue to feel good! Her doctors say that during this phase is when most kids lose their hair, feel the sickest and have to be admitted into the hospital because of complications (fever, etc). The good news is that as long as there are no delays, due to low blood counts, she should be done with this phase a week or so before Christmas. Hopefully that will be enough time for her to feel good for the holidays.