Monday, October 30, 2006

October 30, 2006

The girls go trick or treating in Readlyn with Cousin Drea, the toucan.

Last night we did a little trick or treating in Readlyn. Chloe really enjoys this holiday since she loves candy! Leah was excited to begin with, but ended up handing out candy with Miranda when we stopped by the house.

Chris will get back today from Austin. After a travelling fiasco to get there on Thursday, I hope the return trip goes more smoothly. He has told me over and over what a wonderful, inspiring weekend this has been. At some point he will have to blog to share the details. I do know he has been impressed with all aspects of his experience - from Austin itself to the summit and the people he has met.

The girls and I had a good weekend at home. We did not accomplish anything exciting, but it is Monday morning already and we are off to another week!

Next Monday is Leah's port removal surgery, so please pray for an uneventful surgery and for a lower AFP. Also, just yesterday Lizzie Stratton, a young lady from Nebraska, lost her battle with hepatoblastoma. She was originally diagnosed in 2002 and the disease eventually metastasized to her bones. Her mother, Sami, heard about Leah and emailed words of encouragement many times to us. We continue to pray for their family in these hard days ahead. Their website is:

Thursday, October 26, 2006

October 26, 2006

AFP = 3.6

Not as low as last month, but Dr. Rahdi still says all is good. It is well within normal limits, there is a variation depending on time, growth, and many other factors.....and it is not increasing exponentially, either. They did not take any other blood levels today. I was all ready to find out her hemoglobin and platelet levels, but apparently they feel she is doing well. We did not even have an x-ray of her chest like they said she would get each month. We did meet with the surgeon (Dr. Lawrence) because they are planning on taking her port out. Surgery is scheduled for November 6. That all seems encouraging at this point. However, they are quick to point out that there are no guarantees. So, please keep praying--for Leah's complete healing here on earth, and for a low AFP (of course we would like next month's to be lower so there is not an upward trend). While there were the normal people at the hospital that Leah enjoys seeing, she was rather cranky and tired today, so it was not a very exciting visit. We did see James briefly. Tom and Mary Lou took care of us in Clinic. Dr. Rahdi and Dr. Lawrence both saw Leah. They still think she looks great.

Other than that....we dropped Chris off at the Cedar Rapids airport at 8 AM. As of now (7:45 PM) he has not checked in to his hotel in Austin. His flight out of CR was delayed, and he had to find a different flight to take from Chicago to Austin, so I am rather curious how his day has gone. He has meetings all day on Friday and Saturday and then has part of Sunday free.

The girls are both staying with my mom and dad tonight. Originally Leah was going to spend the day Friday with Anna and AJay "helping" take care of Drea. To get Leah off to Readlyn and the other two to Karen's would have made my day rather hectic from the get-go. So, Leah was planning on spending her first time overnight with Grandpa and Grandma Behnke. Somehow this transpired into Chloe also going along--Leah has big plans. Today she kept telling me "Tina, we are going to have a discussion" when I brought up these plans. So, now my parents get to have a hectic morning. It is just Reeve and me. Nice in some ways, but lonely, too. I am not used to it being so quiet.

Just a few days ago I decided to clean out my emails that have been collecting for almost a year now. As I went back and read some of the messages we received shortly after Leah was diagnosed last November not only did it bring back a lot of memories, but it also reminded me how fortunate we are to have so many people that care about us and have taken time to reach out and tell us that. We might not get back to everyone who emails, but we certainly appreciate every message we receive. It is amazing to us that almost a year has elapsed. We certainly did not know what our future held and are grateful that we are still all here a year later and that Leah is feeling well. That being said, we are also becoming more aware of what a long journey cancer is. Originally it seemed that chemotherapy and then surgery would be all that was needed. Obviously we were very naive and probably only absorbed what we were able to at the time. As the months have passed we now know that even being "off treatment" does not mean the journey is done. The worries remain and the future is still uncertain. We remember other people who have gone through treatment for cancer and how we wrongly assumed that once they were off treatment they were cured. It was easy for us to put them out of our thoughts at that point. Unfortunately we now know from firsthand experience how wrong that attitude was. We continue to pray fervently that Leah remains in remission and her body continues to be cancer free. We certainly do not take a single day for granted anymore. So, please continue to keep Leah in your prayers. We receive great comfort from that fact that so many people are praying for her continued health.

Monday, October 23, 2006

October 23, 2006

Another Monday already! We survived last week even though we were quite busy and the house got quite messy.

Tuesday the girls both had dance class and we had conferences for Leah. Leah is doing very well at school. Her teachers are impressed with her large vocabulary (she managed to tell them one day that she is on "shopping probation") and she is talking about words and syllables at home and is close to reading a bit more on her own. Last night she got out a Dick and Jane Christmas book and read it to us. There was some guessing at words, but she knew a lot and surprised me sometimes with what she knew. She called Grandma Kathy and read it to her on the phone and today she is going to take it to school to show Miss Megan and Miss Jenni. She is quite proud of herself.

On Wednesday it was officially Chloe's birthday. Leah managed to get up at 6:30 to help me wrap presents and then managed to get Chloe up in time to open everything before school and daycare. We went to Chuck E. Cheese's for our birthday supper. Leah was running everywhere--she was having a great time and so was Chloe.

By Friday we were tired out, but I had bought tickets for Leah and myself to go to the Mercy Me/Audio Adrenaline concert at McElroy Auditorium in Waterloo. The crowd was huge and Leah was very excited. The whole experience was new to her and we made it an hour, but it was so LOUD!! Leah told everyone we heard headbanger music.

Saturday I worked at the library, Grandma Karen and Grandpa Arlyn had the girls in the morning, and we had a brief shoe shopping experience to get Leah some boots since it appears that snow is probably coming sooner rather than later. UGH! We also spent some time with the triplets at our neighbor, Esther's house. It was Che's 20th birthday party (today is his official birthday) and both girls were very excited to be there. Sometimes Leah acts like she knows Che and other times she runs away. Saturday was the day she was all over him wanting to play with him.

This upcoming week we have our Iowa City trip.....something I dread. It feels like we just get done with one and then start to get nervous for our next one. Please pray for a very normal visit with a very low AFP number. Thursday morning Chris will be flying out of Cedar Rapids for Austin, TX. A few months ago he applied and was chosen to be a part of Lance Armstrong's Summit to fight cancer. The meetings in Austin last 2 days so he will be gone Thursday - Sunday and will know more after he is there what this entails. While we certainly wish we never had the experiences of this past year, this is a chance to do something positive with the experience we have had.

Since it is the beginning of the week I have many things to do yet to get ready for the day. Please keep Leah in your prayers - especially for her complete healing on earth.

Sunday, October 15, 2006

October 15, 2006

Reeve's Baptism- Pastor Feldt with our family

Chloe's 3rd birthday-eating and wearing some cake

Tomorrow is the big day- I am back to work and we are back to a normal routine. I am already dreading the morning rush, but am sure we can figure it out after a few weeks of working on it.

This past weekend we celebrated Chloe's 3rd birthday and had Reeve's baptism. Leah and Chloe were both very wound up last night for the events. In case you cannot tell from the picture, Chloe enjoyed her cake. She requested an Elmo cake and Aunt Suzanne got her an Elmo that she and Chris later programmed to talk to her and sing her Happy Birthday. Today we definitely needed some naps, because both girls were up in the night -and managed to wake everyone else up, too. Today at church Pastor Feldt asked the kids during the children's sermon if they ever whined. Chris and I looked at each other and rolled our eyes. That seemed to be the only tone of voice we heard yesterday. Leah came back and laughingly said, "he asked us if we whined?" -kind of like, "can you believe that?" She also quite happily agreed that she does.

The one other accomplishment of this past week is that I finished scrapbooking our Florida trip. That is a record for me-to get something done close to the time it actually occured. The girls have both shown their friends and enjoyed reliving memories of our time away.

This week we have Leah's first parent/teacher conferences at Discoveries. Since we see them every day I doubt there are any surprises. We are so happy that she has had a normal first quarter of school and continue to pray that she has many more normal quarters of school.

Our next Iowa City trip is October 26, so please pray for low, low AFP numbers. As reassuring as her last check-up was, it does not do anything to alleviate the stress of the next visit, because you just never know. We pray each day for Leah to be healed here on earth and to live a long and healthy life.

Leah also has a few words to say as well:
rcydhyx lkhfrnmhb,xc.;,gl;,edfl;gh,;das,l;cxd,m b mhv,.bm,ghm.cfrllgfl;,fkl;mlgmlgmlmdfklmkgl

Tuesday, October 10, 2006

October 10, 2006

Chloe and Leah with painted faces.

Our lunch at the Crystal Palace in Magic Kingdom with Pooh and his friends.

We are back at home in Denver after a whirlwind week in Florida. There is really nothing we would change about our trip--everything was perfect.

On Friday, our last full day there, we managed to spend almost eight hours at Disney World. We started with Epcot and took the monorail over to Magic Kingdom where we rode some of the same rides as on Monday and took in a 3-D show, Philharmagic. Chris was able to ride a few rides on his own while I shopped with the girls. We ended up mailing a box home because each day we would get a gift for both girls in our villa, plus we acquired a few things as well, and ended up with a huge amount of "stuff."

The flights back were uneventful, aside from a bumpy start out of Orlando. I am not a big fan of flying (I love looking out the window, but hate that I am not in control at all) but both girls like it. Leah still likes the escalators at the airports. When we were walking in the Detroit airport to our gate Leah was busy singing, "Give us any chance we'll take it, Give us any rule we'll break it..." from Laverne and Shirley. Chloe was busy with "who let the doggies out?"

We arrived in Denver around 9:30 on Saturday night and spent Sunday unpacking and regrouping. Our house looks like a tornado has hit it even with my cleaning. I spent Monday going through winter clothes and packing summer things away. Reeve's baptism is this Saturday night as is Chloe's 3rd birthday party. It is also Wartburg's Homecoming this weekend so we will hopefully get to the parade. This is my last week of maternity leave, so next week it is back to the real world. Even though I am not looking forward to some aspects of that, I will be grateful for each and every day we have to be a normal family- even if that means rushing around and not getting everything done that I would like.

Our next Iowa City appointment is on October 26. It seems we get done with one and can then begin worrying about the next one. So, please keep on praying for her AFP to be normal--and very low- yet again. We will meet with surgery to schedule her port to be removed as long as her numbers continue to look good. Leah's cough is also still hanging on. We give her cough medicine, use the vaporizer, but she still has a drippy nose, too. Please pray that she can get rid of this bug as well.

I will continue to post pictures of our Florida trip, so prepare yourselves. It was a week of happy memories for us.

Friday, October 06, 2006

October 6, 2006

Our vacation has been wonderful! Today is our last full day here and we plan to go back to Magic Kingdom to go on some of our favorite rides again. I also made reservation at a restaurant, The Crystal Palace, for a late lunch. Pooh and his friends will be there. The girls have enjoyed this trip, too, but it is still the simple things they like the best: the carousel here at Give Kids the World (that is open all day long), or the play area at Sea World with some huge slides.

On Tuesday we went to Animal Kingdom. There we took a safari and saw some wild animals. The girls both had their faces painted. Leah was a zebra and Chloe was Minnie Mouse. We also saw The Lion King show and took a dinosaur ride. We were there almost four hours and the weather was beautiful. We saw only a fraction of the park, but four hours seems to be our time limit.

Wednesday we spent at Universal Studios and later Daytona Beach. The girls met Sponge Bob, Dora, Jimmy Neutron, Curious George and took an ET ride. Daytona Beach was wonderful and we probably could have spent a lot longer there, but because the tide was rising we had to move our vehicle. The highlight of this day for Leah was that it took us 2 whole hours to get back! Supper was Olive Garden, so Leah was excited about this as well.

Thursday we were at Sea World. There we saw a wonderful show and fed sea lions. Leah got to ride her first ever roller coaster. She just barely made the 38" height requirement. Chloe was very upset she does not come close to meeting the height requirement. We were at the Village last night for Christmas festivities. They celebrate Christmas once on each person's stay here, and we had a traditional Christmas meal, Santa visit, and presents.

Leah and Chloe have both been eating ice cream each morning for breakfast. We visit the ice cream parlor several times each day. Yesterday Leah and Chris swam in the pool here which we plan on doing again tonight. There is really too much to do to get it all done.

And, while our vacation has been great, we miss home (and Reeve), too. So, tomorrow we will pack our bags and fly out of here in the afternoon. Pray for safe travel back for us and a restful weekend so we can return to our normal routine next week. Next week is also my last week of maternity leave, so then the rat race will begin.

Leah still has her cold -drippy nose and cough-although she has a lot of energy. We pray that her cold goes away quickly and that she continues to remain disease free.

Monday, October 02, 2006

October 2, 2006 - Disney World

Just a quick post....there is too much to do to want to sit on a computer!!

Our hotel stay in CR was great....we got the royal treatment from Make a Wish- a master bedroom, living room and whirlpool. Of course the kids enjoyed the pool and swimming.

Our flights were also very uneventful. Chloe's first time on a plane. She was excited and stayed awake for both flights, but did not really get the idea of flying. Leah had the window seat but preferred to read, talk, etc. She even pulled the shade. I asked to trade seats, but she informed me, "Tina, you can't always get what you want."

Right away in Orlando we had our Make a Wish representative waiting for us, got our car, directions and were on our way. Our villa is awesome. At some point I will post pictures-but they have 100 villas like this and are building 50 more. We have 2 bedrooms, a whirlpool bath, kitchen, living room....basically we could more here for good. Meals are provided. There is an ice cream parlor open all day, we canorder pizza, they give train rides around the villa, we have different activities, a pool....constant entertainment.

Yesterday we relaxed and checked things out here a bit. Today we set off rather early for Magic Kingdom. We stayed for 4 hours---Chris thought we could have stayed longer---and we could have, but the girls are tired out and so we are napping now. We did do some great rides. The best is still It's a Small World, even after 25 years (when I was here once before). Of all weird things we ran into another Denver family who is vacationing here, too. It really is a small world! Tonight we will try MGM studios and their laser light show.

Again, thanks for checking in and your continued prayers. Please keep praying for Leah's health and complete healing here on earth.