Re-Cap of Dr. Appointment

Yesterday's appointment went well. Leah's AFP is 2.o and we shouldn't need to go back to oncology for an entire YEAR! That was the good news. The bad news is that we are being referred on to endocrinology. Part of that was anticipated because of Leah's slow growth. However, that is not the only reason we are being referred on. Leah's thyroid number was not in the normal range. Dr. O was not extremely alarmed, but said because there are now two concerns we should get this looked at. While I very much agree and don't want to overlook anything, it would have been wonderful to leave knowing we weren't going to go back for a year. But we will take the AFP and be happy for now. By the time we arrived home they had already called to schedule an endo. appointment. I thought perhaps the level of concern was greater by their department than our doctor had indicated if they already called so quickly, but it isn't. Leah's appointment is on November 7. That is the first time we could get in. Yesterday Leah had her hearing checked - something they do every two years. Her hearing is remaining stable. She still has high frequency hearing loss, something Leah will argue with you about since she can hear just fine, in her opinion.

Shopping consisted only of Prairie Lights bookstore and the consignment shop in Marion. Sometimes we don't have much luck there, but yesterday Leah found several things calling her name for fall and has a nice little stack to add to her closet. Both of us were rather tired last night, but my mom finished off a flannel quilt for the girls' daycare provider (we are now done with daycare after six and a half years at the same provider - Reeve will be attending a Pre-K program at the elementary school this fall) so we went to her house to finish clipping the quilt squares and then delivered the quilt to Karen. I hope she knows how much we appreciate every single minute she spent with the girls.

Thanks for checking in. As Leah's next appointment draws closer on the calendar, I will update again. We continue to appreciate your prayers and thoughts for Leah's complete healing.

Mid-Year Update

I can hardly believe that half of 2011 is over with already! It is finally feeling like summer here in Iowa and I have been enjoying taking the girls to the pool nearly every day. We have already had our vacation - a trip to Colorado with my mother. Highlights include eating at Casa Bonita, visiting the Royal Gorge Bridge, and seeing my uncle Loren at his place in Southern Colorado. The girls are enjoying a long summer break this year. The elementary school in Denver is having construction done on it so that all K-12 students will be at one campus. That means the students were out of school in May and don't go back to school until August 29 (Reeve's 5th birthday). Unfortunately I have to return to school on August 3, and summer is really more than half over for me.
On July 21 we will be taking Leah for a check-up in Iowa City. I have been just trying to block this out of my mind and would really rather not go, but don't have much choice. I am praying for a very normal, boring check-up and a very low AFP. Leah is not much interested in going, either, and stomped off when I told her that there was a check-up coming up. On the same day we found out when Leah's appointment was scheduled we heard of another family now in a similar situation to ours five years ago. Their four year old daughter was diagnosed just that morning with a Stage IV neuroblastoma. While Leah's type of cancer was hepatoblastoma, we certainly know too well how horrible it is to hear the diagnosis. Although we made some wonderful friends in Iowa City and appreciate all the care and skill there, it is not an experience we wish on anybody. We are continuing to pray for Lily Grace and her family as they begin their own cancer journey.

I know most people do not check this blog frequently anymore. Life has been very normal for us for a long time, and we pray that it continues to go that way. We are so grateful for the thoughts and prayers of others who continue to remember Leah. While some people may take their health for granted, there is not a day that goes by that we don't remember what it was like to want nothing more than a healthy child.

My next post will likely be after our check-up. Any extra prayers for Leah's continued health are much appreciated.

All's Well

AFP - 2.8

So, the AFP is up a little again. They- Leah's doctor and the PA there- are most definitely not worried. This time I haven't been as worked up when I see the number 2.8. Yes, I would like it to be lower. But, all her other labs were fabulous. Both her platelets and hemoglobin were higher than the last time. Her echocardiogram they do to monitor her heart function was also good. We don't have to go back for six more months.

The weather cooperated today, with the only not-so-good driving occurring during the last 30 minutes of the trip when I got off the interstate and took country roads/highways back to Denver. It is blowing quite nicely right now. We shopped a bit and ate lunch at the Olive Garden. Now we are all home and since there are a few people who haven't had enough sleep we might soon be spending some quiet time in our bedrooms.

Dance Marathon is just a few weeks away. This will be our sixth one! I'm not sure if I should be excited about that, but the girls LOVE it. Leah is also attending a music camp on a Saturday in February at Wartburg College. Just yesterday she started the SOAR program at school, which is an enrichment program that meets once a week. There focus is on architecture so she has been busy telling me all about the Eiffel Tower.

The bridal show on Sunday was fun. There was a lot of waiting around, so I am not sure if Leah is wanting to do this again, but it was a new experience for her. The pictures I'm posting are from that. I think her hair looks beautiful.

Hopefully life will continue to be boring and normal. I can hardly wait for spring! Thanks for checking in and continuing to keep Leah in your prayers.

January 15, 2011

How can six months possibly fly by so quickly? Leah is scheduled for her check-up this Thursday. In addition to her blood draw, she will also have an EKG, which is a routine procedure every couple of years. I broke the bad news about an Iowa City visit a while ago, but Leah must have forgotten because today when I told her about Thursday she was most definitely not very happy. Things appear to be fine, but I am starting to get worried. I would like to think that at 4 1/2 years out I could breathe easy, but I don't think that's possible. And right now life seems so busy that it seems hard to even sit and think about cancer and treatment for too long. This time of year is when Leah was undergoing treatment five years ago, so there are certain memories that are triggered just because we went through all of this in the winter.
Tomorrow Leah is modeling in a bridal show in Waterloo. She was asked to do this along with other Make A Wish children. While Leah doesn't really enjoy being the center of attention and had to be coerced to do this, Chloe was wishing she would have been asked. Pretty much all of tomorrow will be taken up with dress rehearsal, hair appointment and the actual show. I hope I can get some good pictures of her.
While I no longer update this site very frequently, I will try to post pictures and I will definitely update after Thursday's appointment. Thanks for checking in and your continued prayers.

July 8, 2010

AFP = 1.6
Whew! Today's appointment was no less nerve-wracking than any other one. I would have thought that at this point I would be more relaxed for these check-ups, but it doesn't seem to work that way. Leah is also liking our getaways less and less, and is viewing these hospital visits as a rather large annoyance. She insisted several times that she would not be going to Iowa City today, but lo and behold, she did get in the van this morning with me.
All of Leah's bloodwork looks good, and in typical fashion every result was back in except for the AFP - the one number I really need to know to put my mind at ease. We hung around after the appointment waiting for that number and then were quite happy to hear the new level. We won't be going back until January 2011 now. I think I will enjoy not having to go as frequently! And, as of last month we have now reached the four year milestone for Leah being off treatment.

I guess the thrill of shopping after the appointments has worn off. We did hit Prairie Lights Bookstore and the mall very briefly, but were home by 1:00, perhaps the earliest ever. That was fine with me - I am exhausted.

Even though it is July, I now feel like I can start enjoying summer. We hope to visit The Falls Water Park many more times, and perhaps can even fit in a vacation of some sort. Discussions are underway to figure this out.

Thanks for checking in on us and for the continued prayers for Leah.

July 3, 2010

Oh, how time does fly! The Fourth of July weekend makes me realize school is just around the corner...and I feel like I have hardly been out of school yet. We also have been to the pool very few times, or done much of anything else. Leah's next appointment is this upcoming Thursday, July 8. Ugh. That is what I have to say about it. It would be lovely to just know things will be great before even going to the appointment, but despite how wonderful she looks on the outside, there is always that fear that something will be discovered. So, we are praying for a boring appointment, a low low AFP, high platelets and hemoglobin and a bit of growth.
Leah does look great....she finished up her T-ball (or whatever it is when it is machine pitched) season last week. She and Chloe and now Reeve, too, are taking gymnastics. Leah is taking piano lessons which Chloe will probably start at some point this year, too. Both Leah and Chloe found out who their teacher will be next year and are excited about that. Reeve alternates between excitement about preschool and telling us that she's not going. Could be interesting. We are truly in our summer routine - late bedtimes and late mornings. I am not so sure Chris enjoys this because he is the only person who has to get up in the morning and get to work.
Today we have my nephew's third birthday party and on Monday we will be going to Des Moines for a Tuesday at Adventureland.
I will update after our appointment on Thursday...thanks for checking in and the prayers for Leah's continued good health and healing here on earth.

March 4, 2010

Well, we did keep Leah's appointment. Dr. Radhi even called me on Monday morning after I emailed him twice asking him his advice. The AFP this month is 2.5.....still well within the normal range, but up a bit. No one in Iowa City is worried, but of course as Leah's mom, I would like the AFP to decrease every single month (which technically isn't possible). It has been 2.5 before, but not for a while. I guess we are hoping this is a growth spurt and nothing more. She has been off treatment for almost four years now, and each and every day we are thankful for her great health. We will continue to pray that her next AFP is lower again so we can breathe a little easier. Her platelets were up a bit, which is what we wanted, as was her hemoglobin - this was not surprising, either, since she has been very full of energy lately. Leah is now 3 ft 9 and a half...it would be great if she could have a little growth spurt.
Shopping and lunch at Hu Hot were on the agenda today, but we arrived home earlier than normal, which was kind of nice. We were both very tired and this way we were able to pick up Chloe from school. Tonight we need to be working on bedtime, but I promised the girls we would watch an episode of Home Improvement before we call it a night. They are waiting (im)patiently for me to be done posting, so I better call it a day.
Thanks for checking in, and all of your prayers. We continue to pray for Leah's complete healing here on earth.