Friday, July 28, 2006

July 28, 2006

Pool time on Thursday! The Denver Pool is back in business and Leah, Chloe and Chris had a great time playing in the water. (I also promise that I won't put new pictures up each time I post, but we purchased a digital camera this summer to record some happy summer memories and I am enjoying using it).

We left for Iowa City at 6:45 and got there in time for our appointment. There was some confusion at first whether we would be seen by anyone or just having labwork done, but of course we were planning on a visit with Dr. Rahdi. Leah got to have Tom as her nurse and he quickly accessed her port, drew blood and then removed the needle. Then we got to sit and wait for the results to come back. Obviously this is quite stressful. Chris and I did not even talk about it ahead of time, but the results are so critical that days before these visits the level of tension and concern is much higher, and it is always in the back of our minds. Even though we will always worry over AFP numbers, it will be wonderful if we can get several normal readings as the months pass by. So, while we waited, Dr. Rahdi checked Leah out. She was probably her most conversant and happy he has ever seen her. He looked at her Montana pictures, felt her stomach, and then discussed things with me.

Leah does have some damage to heart function from her last chemo. drug, doxirubicin. They are monitoring this through routine EKGs that are performed. Right now they are hoping that this damage will be repaired over time. We even had a chest xray yesterday as a precautionary measure. We discussed the risk of a second malignancy due to chemotherapy drugs, which of course exists. So, happy topics-NOT. The AFP result was not even back right away so we visited James who was working on the bone marrow floor. Leah was busy abusing him--we hope James was able to make it home last night after his most recent beating. He thought Leah looked great and could tell a difference in her energy level and happy personality, too. She giggled and ran after him for quite a while. Then finally after I could delay no longer we returned to the clinic to get our lab results. Dr. Rahdi was pleased to tell me "good news and more good news." Even as I entered the clinic Tom was giving me the thumbs up signal for our lab work. Leah's AFP is 2.1. What a great number! As Dr. Rahdi pointed out, my AFP and his might both be higher than that because normal is 0-8.9. And, her electrolyte levels are balanced, so we are going to try to stop all medications. That means a blood draw next Thursday at Covenant to check and make sure things are still OK, but that will seem great to not have to give daily doses of different drugs. We are still on bactrim for a few more months-just Mondays, Tuesdays and Wednesdays. Interestingly enough, port removal was mentioned, too, for a few months in our future if things continue to go well.

We feel we are certainly witnessing the power of prayer firsthand and ask that you continue to offer prayers for Leah's continued healing. A few weeks ago at church Pastor Feldt's sermon centered on the topic of miracles. He discussed how often we ignore things that happen today and don't recognize miracles anymore. All I kept thinking was that there is no longer a day that goes by that I don't recognize that miracles can happen and watching Leah run around feeling normal is truly a miracle.

We did manage a bit of shopping and lunch at the Olive Garden. We stopped at Barnes and Noble after lunch in Cedar Rapids and Leah picked out a few items. We have been reading a chapter book at night now and are working our way through the Carolyn Haywood Betsy books (the original copyright dates on them are the 1930s so sometimes we have to do a bit of explaining). At first Leah was skeptical of reading such a long book, but she is quite into it now. Anyway, she wanted to pick out a new chapter book and ended up picking out Little House in the Big Woods. I never really thought about how she arrived at her choice because I was looking at something else when she chose it. Later on at home I told her babysitter that she had picked out a new book to which she then supplied the title. I asked how she knew what it was called and she informed us that it said that on the cover. Chris and I have caught her reading different things now for quite a while, but when asked to read a word for us she gets very annoyed. She also told me she wants to read it "quiet in my head like you do." So, she was very serious about finding a quiet place and telling me which page she was on. I doubt she is getting anything out of it except she did pick out a few words for me or ask me questions about something she read and I would have her show me that phrase or word in the book. As a school librarian who is never without a book herself what could be more exciting to see in your own child?

As you can see from the picture, we did go to the pool, too, and even the farmer's market in town. Both girls are still in bed but it looks like another gorgeous, hot summer day here. We are supposed to meet our friend, Heather, for lunch. I should start scrapbooking again, too because it is less than a month until school starts and I have plenty to do.

Please continue to remember Leah in your prayers as she continues to do well and enjoy each and every day!

Wednesday, July 26, 2006

July 26, 2006

Leah and Chris are back from Montana! This picture is of Leah at the airport being greeted by Chloe. Chloe was quite excited to see her sister (and dad) again. She and Leah held hands in the airport. Within an hour of being home they were playing dolls and fighting, and eventually having some time outs for hitting each other. So, I guess life is back to normal.

Chris and Leah had a busy time in Missoula. They spent a lot of their time outside and Leah looks tan, although it is Chris who really looks much darker. Some highlights include a rafting trip, picnics outside at various locations, shopping at Rockin Rudy's, icecream at the Big Dipper, an outside movie on Saturday night, a trip to a local waterpark, and playing with many of Randy's neighbor kids. The plane ride was also exciting, although, the escalators at the Minneapolis airport seemed to be the focal point of the whole flying experience.

Leah is happy to be home and after five days I can certainly see some more signs of hair coming back. She and Chris were somewhat surprised by all the cleaning/reorganizing/and digging out of trash that was accomplished in their absence. They both had been forewarned that this would occur, but I am sure it was still somewhat surprising. Leah's exact assessment was, "this is impressive." The living room has a new arrangement along with some new furniture, the basement has been mopped, shop-vacced, scrubbed, and a lot of stuff thrown out in this whole process. In fact, so much cleaning occurred that I could never have done it myself. AJay and Anna, Suzanne, Lis, and my parents all got in on the action (I am sure they didn' t know what they were getting themselves into when it started). We never did get to the closet project I still want to accomplish this summer and some bunk beds will be delivered in a week or two as well. Leah is very excited she will be here for this project.

Tomorrow is an Iowa City day. As I am sure you may be able to imagine it is not a visit we look forward to. They will do an AFP check again. So, even though we have been busy, this has been sitting in the back of our minds, and it is something we continue to pray about - to have very low AFP results. We ask that you, too, continue to keep Leah in your prayers - for her health to continue and for cancer to become a distant memory to us. Interestingly enough, Lance Armstrong will be in Iowa City/Coralville tomorrow for RAGBRAI and to raise awareness about cancer.

We continue to enjoy some very hot summer days here and are looking forward to August--especially August 15- Leah's 5th birthday! Thank you for all the thoughts and prayers being said for Leah each day, and for your continued concern about her and our family.

Thursday, July 20, 2006

July 20. 2006

The travelers are off to Montana. Leah fell asleep on the way to the airport, so this is the picture outside the airport in Waterloo where I let them off. Chloe was still fast asleep in the van, too, and even though I would have liked to have gone in and sat with them until they boarded, it was a good way for Leah to leave without having to think too much about missing anyone/anything. The only tears she shed were earlier before leaving because she would not have her Schwan man cinnamon roll for breakfast each morning. I hope both Chris and Leah have a wonderful time and cannot wait to hear about it. Pray for safe travel, happy memories, and continued good health.

Monday, July 17, 2006

July 17, 2006

A week has passed since I last blogged and Leah has been keeping us busy. Our only true medical moment was a blood draw at Covenant last week. We are now done taking postassium. YAY! This was probably the most dreaded of Leah's medicines, although she really did not complain about it too much at all. So, we are still taking magnesium and fleet once a day and bactrim on Mon, Tues and Wed.

The highlights of the week have been VBS for Leah. She loved it! It was great for her to get to spend some time with kids, too, since that has not happened for her very much. We had a play date with Matthew and Annika Franzen last week as well. Matthew and Leah were special buddies from church before they moved two years ago, and even though Leah did not recognize him at church when she first saw him (probably because he is no longer "baby Matthew"), their friendship picked right up where it left off. Chris and I took both girls to see Cars (the movie) -our first family movie time. It was long and neither one of us loved it, but the girls were happy to munch on popcorn and drink pop. Friday we celebrated my mom's graduation from Viterbo's masters program with some pizza and an icecream cake. And yesterday my mom and I took the girls to Des Moines to stay with Aunt Suzanne overnight. We also shopped, visited the new library (probably not on most people's vacation itineraries) and the Science Center. It was just too hot for the zoo. After arriving home Leah wondered what else we could do tonight, so she and Chris are out for a run on the trail with the jogging stroller and then we will make a visit to DQ.

The big countdown for Montana has been happening here. Leah and Chris leave in just 3 days. Leah is getting more excited, and I am getting a little sad that I won't see her for five days. She has been my CONSTANT companion for seven months. However, this Chloe time will be nice, too, and she and Chris should have a great time.

In ten days we head back to Iowa City for a checkup. This will be when they take her AFP reading again. Of course I am worried about it and hope that everyone is praying for her continued health. She has had such great days and even seems a little squirrely that it is hard to think anything could be wrong, but obviously we need to keep right on top of this and keep praying that things are just fine.

Leah has had many things to say and each day I laugh at her vocabulary (or try to remind myself that she is almost a clone of me so I should watch what I am saying and how it sounds). She informed us last night that "it is important to drink a lot of liquids." She has been busy telling Chloe "Lady, you get right over here!" (this I am honestly not sure where she picked up). Her other favorite word is "deesgusting!" She gets up each day and makes a beeline for the computer to check her email. She usually can tell me who all my messages are from and if there are other junk items in my account. The downside of this is that there have been a few fights about who is in charge of the computer.

Please continue to check in on our website and pray for Leah as well -- we truly believe in the power of prayer and know that she is still in need of many for her continued healing on earth.

Monday, July 10, 2006

July 10, 2006

First of all, I cannot believe the Fourth of July is over with already! Summer is flying by. I have been out of school for just a month now and still have way too much scrapbooking to get done with yet. Leah is having some wonderful days. Our doctor/hospital visits are fairly minimal now so we have returned to some form of normalcy here in terms of that. Last Thursday I took Leah for a blood draw at Covenant so they could check her electrolyte levels. She was pleased to find out it was only a finger poke, and we were even more pleased later when they halved her medications again. So, she has gone from 6 ml of potassium 2x per day to 3 ml in the morning. She still takes magnesium and fleet as well in the morning, and will have to take bactrim for a while yet on Mon, Tues, and Wed., but they have eliminated calcium altogether. Since they made another cut in her medications, we will be going for a blood draw again this week to make sure her levels are still OK. The big day for an AFP check is July 27, so we are praying for a normal reading and hope you will continue to pray for her as well.

In the past week we have been very busy! Leah has started to scrapbook with me. She has her own book, which means that Chloe also wants to scrapbook. They think it is great fun, but I am not very fast with my two helpers by my side. Leah has proudly showed her scrapbook to many people. On Wednesday last week we all went to Adventureland with my sister, Suzanne. The girls had never been there before and enjoyed it a lot. (If I can figure out how to put some pictures on here, I will add those later). The bumper cars were an especially big hit. We also visited Suzanne's new condo she bought, shopped at Archivers for scrapbooking supplies, ate at the Macaroni Grill, went to Barnes and Noble, and visited the Fickbohms (the girls just had to meet their baby-who just turned one- Abby) before coming home. Leah told me it was a fun day, but she was really tired. The night before we had watched fireworks with the Epleys and did not come home until after 11, so I was very tired and could certainly see why the girls were.

We have also had fun with Drea, who visited us and helped us use our Dora sprinkler. Leah had been inquiring about when she was going to go back to daycare again, so instead of Chloe going last week, I took Leah there for a few hours on Friday. I think she enjoyed that, too, and has always talked about daycare as though she were there just yesterday even though she had not been there since right after Thanksgiving.

This week we are going to try to get in for a massage, which is something Leah has been requesting for a while. We also need to work out several playdates, and she is wanting to visit my dad's friend, Lavern, who has told her he has a saddle for his little horse so that she can ride it. In the evenings this week she has VBS -that started last night- and she was ready for us to drop her off and be on our way.

Chris and Leah will be leaving for Missoula, MT in just ten days for a visit with Chris' brother. This will be her first plane ride and her first time away from home without me for any length of time. I know she is looking forward to it and has a whole agenda planned out.

Once again, we thank everyone for their prayers and thoughts for our family. We continue to ask that you pray for Leah's AFP to remain in the normal range (we like 3.5 or lower :)) and for her good health.