Thursday, November 30, 2006

November 30, 2006

Reeve- 3 months old!

Chloe and her new sweater (It is my first knitting project - with a bit of help from Grandma Kathy)

Leah - dangerous with the scissors

AFP= 3.5

Things went well today in Iowa City. Once we arrived in Iowa City we checked in at the Peds. Clinic and saw Tom right away. He visited with us and then on his way by, Dr. Rahdi stopped in, too. He chatted for a while as well, and apparently that was the whole check-up as far as poking around on Leah. Since she was dancing around, poking Tom in the butt, stealing his name tag and giggling a lot, she must have looked pretty healthy. She now has blood drawn from a vein as opposed to her port. This is done in the phlebotomy lab there in the clinic. That was a bit scary at first and some tears were shed. I had put emla cream on both arms to numb them since I was not sure which one they would use, so I would like to think the tears were more over the new experience than anything else. Tom even came along to hold Leah's hand and got her a sticker when it was over. We also had a chest x-ray and a hearing test, too. Leah managed to flunk the hearing exam at school yesterday (we knew she would because she has high frequency hearing loss) and Iowa City ended up rechecking things. She still has the same hearing loss. There is one level that is better and another that is worse. The one that is worse they are attributing to her having fluid in her ears--which they checked by taking a picture of her ear while we were there. So we will have the ears checked again in three months. By the time we got back to the clinic from our two stops they had the lab results back. The whole time we were walking back from the audiology test (which is located in outer Mongolia, or so it seems) I felt like I was marching to my doom because I knew the lab results would probably be back and every possible scenario goes through my mind. Usually the ones I imagine are the not so happy ones. Everyone in clinic was happy with the AFP-- Dr. Rahdi made a point of telling me that it had gone down. I told him that I considered the move from 3.6 to 3.5 to be stable, but he assured me it was a move DOWN! And, with that we were off to the Olive Garden. Leah had an icecream sandwich (her new favorite) on the way down as her breakfast so she was starving. I had skipped breakfast because at that point I really did not feel like eating, so Olive Garden was sounding pretty good. Before leaving we did manage to run into some people we have come to know over the past year. Steph and her dad were there for a check-up and she is doing well- she had a stem cell transplant for a recurrence of Ewing's Sarcoma in February. We also ran into Megan and her mom. They are going to Disney World next week and staying at Give Kids the World. They will have so much fun!

Olive Garden was good and we had to stop at Puddlejumpers, our consignment shop and load up on some really cute clothes. Chloe scored big with a velvety black dress with sparkles all over and a rim of black and silver fur around the wrist band. Quite frou-frou.

A few days ago Leah was busy telling me that she is going to be a teacher and librarian when she grows up--just like Mom. (This is taken with a grain of salt. My mom's former kdg. students always wanted to be what their moms were, too. The year we taught next to each other I remember chuckling when Cheyenne told everyone that she was going to grow up and work at IBP and kill pigs just like her mom. Plus, we all know that when Leah is a teen ager she will want to be nothing like me, so I should appreciate this now). Anyway, Chloe was telling us what she wants to be when she grows up.... an icecream worker at Dairy Queen. That pretty much sums up Chloe.

We continue to be grateful for all the people who pray for Leah's complete healing here on earth. And, we continue to give God the glory for Leah's continued good health. (A year ago today we were in Iowa City for Leah's first surgery - port placement and liver biopsy. This past year has been a blur in many ways but we are so thankful for all that has transpired and hope we can report next year on November 30th with good news still).

So, now on to December- a dance program, church program, school program (for Leah) and lots of Christmas festivities. The next Iowa City trip is in five weeks- a CT and blood work, so we continue to offer up prayers for a low AFP and clean CT. That trip is the six month marker of the end of treatment- a major hurdle for us to cross.

Thursday, November 23, 2006

Thanksgiving 2006

Leah working on a puzzle of the United States.

Leah and Chloe constructing their first gingerbread house

Reeve Christina-almost 3 months old!

Happy Thanksgiving! I could write page after page of all we have to be thankful for this year..... small things like eating supper at home, sleeping in our own beds, getting to read stories together, taking walks, playing games, and also big things like Leah being in Remission and feeling and looking great, and for the birth of Reeve. It has been quite a year!

Today we did not have any big plans. We were invited to the Ristau's and Behnke's, but Chris was on call and I don't think either of us really felt like doing much. However, Leah does not really associate anything bad with the Thanksgiving holiday and we don't want her to, either. The plans were to go to church and then maybe get out Christmas decorations and see a movie. Last night Chris decided he did not feel well and probably had whatever Chloe had, so he ended up going to bed at 7 PM and sleeping all night. That means we missed church-something I really had every intention of doing today because I felt a definite need to be there. Chris still does not feel great, so he rested much of the day and I took Leah and Chloe and Grandma Behnke to see Happy Feet in Waverly. It is a cute little movie. We also played with the triplets this morning since they were back for the holiday. So, we didn't have a traditional Thanksgiving holiday, but we did not sit around and think about the past year too much, either.

We also are very thankful for the friends we have - old and new- who have been with us over the past year and continue to offer us support. Even on the worst of days we knew there were many, many people holding us close in prayer and offering their help in any way possible. Please continue to pray for Leah each and every day-for good health in this next year, and for another cancer free check-up and low AFP.

"give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1Thes. 5:18

Monday, November 20, 2006

November 20, 2006

Time really does fly it seems! We have continued to be busy at home and that seems to mean that I am just not posting as often. Last week Leah went to see Dr. Sims for a cold/sinus infection that has been hanging on. She had a cold on November 6 (and a few days prior to that) when her port was removed, but she was still having her eyes paste shut each night and lots of green snot, so on the 15th I decided to take her in. He gave her some Zithromax and after about 48 hours she seemed to be as good as new. Her appointment on Wednesday was just one week short of a year ago that we visited Dr. Sims and he felt her stomach. We even had the same exam room which I realized after they showed us in. I am not really superstitious, but I just did not like it at all. Dr. Sims felt her stomach and told her how good she looked. He, too, has a scar from an open heart surgery he had as a child. He told her they could compare scars except he would have to remove his shirt to do so. Needless to say, we did not see his scar.

The girls had dance class on Tuesday night and then we ate at Pizza Hut afterwards with Heather and Lis. It definitely beats cooking on Tuesdays since we don't get home til almost seven.

Chloe now seems to have picked up some stomach bug. After church yesterday she managed to change her clothes and then vomited in the living room--most of it she was able to catch in her Dora purse- much to her chagrin. She could have cared less about the carpet, the purse was pretty important, though. Aside from throwing up she appeared fine-not a big appetite, but otherwise ran around and played. I am hoping the other two girlies can avoid germs if possible.

We watched Garfield a Tail of Two Kitties last night at home. We had seen it in the theater, so with the knowledge of what was to come, Leah laughed hysterically at several parts. I also managed to cook- something I rarely did for a long time- and we had a "family supper" as the girls call them. They love it when we eat together and request that we do it if at all possible. Between dance class and Chris' work schedule it seems like it does not happen often enough.

Leah and I are still working our way through the Junie B. Jones series. There are so many books out there I want to read her, but she thinks we need to read all of these first. ARGH! We have also played several games of Sight Word Bingo. She is getting to be able to read a lot of words---more than I thought she knew, anyway. On Saturday night she read Reeve some books, and then Bernie, too. Reeve has been smiling a lot-especially for Chris and Leah. If she even hears their voices she usually gets a big smile on her face. Chloe is just not as interested in her right now as Leah is, and she also spends all day with her at daycare, so the thrill of having her around is not as great. Leah misses both of her sisters during the day and usually cannot wait to get home to see them.

Other than that, time is marching on. I will admit that in some ways I am looking forward to the holidays this year because they are more hopeful than last, but in others, they are serving as a reminder of how we spent the end of 2005. Leah's next check-up in Iowa City is on November 30 when they will check her AFP. Please pray for good news --very low AFP number and the rest of her blood work to be normal as well. This will be the first time that Leah will have her blood drawn without her port. After all the poking and prodding this girl has been through I don't think it will be very traumatic at all. Your prayers are so greatly appreciated as we continue to ask God for Leah's complete healing here on earth.

Happy Thanksgiving to all!

Friday, November 10, 2006

November 10, 2006

It has been a long time since posting, which means life is moving right along and there is not much to report. YAY!!!

The girls went trick or treating here in Denver on Halloween and had a great time. They both had bags packed with candy. Leah insisted on going "lots of places." This far different than last year when she did not feel well at all. At the time we did not know why, but attributed it to being tired from school.

On Monday Leah's port was removed. Chris, Leah and I had to be in Iowa City by 8:45 on Monday and had her port accessed one last time so they could sedate her that way. Everything went very smoothly. Leah did (and still does) have a bit of a cold so I was not sure they would do surgery, but anesthesia looked at her and decided she would be just fine. Leah was so brave! She has been all along, but aside from getting a little quiet before surgery sat on my lap, talked to the nurses and was so cooperative. Surgery lasted a little over an hour and instead of the screaming child we are used to when she comes out of sedation, Leah cried a little, but was very cooperative and just laid in my lap. Within about 45 minutes she had her clothes on and wanted to see James. We did make it there, but she lost steam and was very tired out. Leah slept the entire way home and rested at home on Tuesday since Chris was off of work. The incision to remove her port is right over top of the one they used to put her port in. And, we now have her port to show everyone.

Our next Iowa City trip is on November 30. Please pray for a very low AFP reading. That date will be one year since Leah was first diagnosed. It is amazing how a year has elapsed. In some ways it seems like no time has gone by at all and in others it seems like forever. In any event, we hope we can put the events of this year behind us and that Leah can have a long and healthy life. She still looks and feels great and after we returned from Florida, her appetite really took off. Maybe it was all the icecream she ate on the trip.

This weekend we are looking forward to snow (at least the girls are). Reeve is getting bigger --she looks more filled out and is smiling a lot. Unfortunately as the third child she has far fewer pictures than the other girls, so maybe this weekend I can get some taken of her to post as well as one of Leah with her port.

It's time to start the morning rat race....Thank you for checking in on us, and please continue to pray.