Thursday, June 29, 2006

June 29, 2006

Sorry for such a late posting. We had a LONG day in Iowa City. It all started when I finally really looked at the schedule of appointments this morning and noticed that Leah's first appointment in clinic with Dr. Rahdi at 11:30 -and her next one was not until 2:00. This did allow Leah to eat breakfast since with a CT there is a span of time beforehand you are not allowed to eat. However it did make lunchtime sad when we watched big tears roll down her cheeks because she was so hungry. The good news is that Leah's AFP is 3.5. Everyone seems to like that number. We don't have the CT results because it was so late when they finished. Leah had a very hard time coming out of sedation today. I held her, or attempted to, and so did Chris and then it was my turn again. She decided we should eat at Olive Garden on the way home and we were hoping that would perk her up. However, right after we ordered she started vomiting. Needless to say, we left the restaurant quickly. Luckily I had brought extra clothes for both Leah and myself "just in case", so we were able to change. We took our meals home with us to enjoy there. Leah slept the entire way back and promptly threw up again after we got in the door. She does appear to be feeling much better now and even ate her meal on the deck. Chris and I are exhausted--both physically and mentally. The plan for the future is another blood draw on Thursday at Covenant to check electrolyte levels. (Her daily medicines have been cut in half now). There will be monthly AFP checks in Iowa City. And, every three months there will be a scan. Obviously these monthly AFP checks are critical. We pray that they continue to remain within normal limits for forever and that Leah can once again be a normal four year old girl.

Tuesday, June 27, 2006

June 27, 2006

We are enjoying another week of summer here at home. I admit we are becoming a bit lazy-definitely later bedtimes, which means getting up a lot later, too. Tonight we took the girls golfing. They enjoyed riding in the cart and want to go back. Leah even claims she wants clubs so she can play. This has been several more days of "normal" life. Leah seems to feel good, aside from needing an afternoon nap (with an 11 PM bedtime I would expect this, though, so it is hard to decide what is fatigue from chemotherapy and what is fatigue from staying up late). Leah has started some beading project that she seems to enjoy. Chloe likes helping, which means we have beads everywhere. I have read a few more books, all of which are total chick lit/trash/mindless fluff, but nowhere near the amount I used to read.

On Thursday we head back to Iowa City. I will admit that this is something that I am worried about. First of all, Leah will be having a CT scan and echocardiogram under general anesthesia. She is never pleasant to deal with when she comes out of anesthesia, so that is traumatic. I am sure there will be an AFP reading that is taken as well. It has been rather easy to ignore this visit coming up, yet it is always in the back of our minds. We are not used to getting good news in Iowa City (or that is what it feels like). So, once more, please pray for an even lower AFP than last time, and a CT scan that shows no abnormalities along with an echocardiogram that is normal as well.

We continue to be pleased with Leah's AFP from last time and have had many people ask if Leah is in remission or is cured. Iowa City does not seem to use words like remission anymore, and cure is never guaranteed. Leah will be needing prayers for a long, long time on her road to being cured. Our last AFP reading was encouraging, but we know that it could begin to rise and that would signal cancer once again being active in her body. So, any relief we thought that we might feel has not really happened for us. Others who have traveled this same road have made similar comments that even though you receive news that should be good and make you happy, there is no end in sight to the worry and looking over your shoulder that now exists. It is good for us that Leah is four and does not spend any time worrying about AFP readings or other aspects of he treatment that are not in her immediate future. We certainly take more time to enjoy every single moment with both girls and all the cute (and sometimes annoying :)) things they do.

Last night as we were getting ready for bed, Leah looks at me and says, "You know what song is running through my head?" Of course I did not. "Loveshack, baby," she responds. Apparently the CDs that some of her nurses made for her are sinking in.

I will post news of our visit on Thursday after we return home. Her clinic appointment is not until 11:30, and by the time we do the CT scan and the echo., I anticipate we will not leave until late afternoon. We will take any and every prayer we can get for some good news in Iowa City.

Thursday, June 22, 2006

June 22, 2006

We are enjoying our summer and not having to be in Iowa City nearly as often, but I will try to post since we are still having blood draws and AFP tests. And, we hope that you continue to remember Leah in your prayers. A normal AFP is wonderful, a miracle, but in order for her to be "cured" it will need to remain normal for at least five years. So, we certainly are on the right road, but not close to the end yet.

Monday was a blood draw day at Covenant. Leah's counts are coming up as expected. Her hemoglobin is lower 9.8, compared with 10.5 on last Thursday. This seems to be the case, though, for her with this combination of chemotherapy. Her hemoglobin drops later than the other counts and is still not very low by their standards. Her platelets that were at 32,000 on Thursday were at 85,000 on Monday, and her white count is back to normal. So, we hope we are done with GCSF shots forever. We still need to have her electrolytes checked weekly and her port flushed, too, but will do that next Thursday when we are in Iowa City.

Next Thursday is another big day. They will do a CT scan of her entire chest region- lungs, and abdomen to check liver regeneration and to make sure there are no spots on liver or lungs. So, please pray for everything to look normal. We will no doubt have another AFP test and then see where things go from here. UGH!

Leah is having a great time and appears to feel pretty good. She has been running around and has every moment jam packed with activity. Yesterday we went to Olive Garden, Barnes and Noble and to the movie Garfield: A Tale of Two Kitties. The movie was cute (despite horrible reviews it was just right for Leah) and Chloe even made it through her first movie. We also visited Grandma Kathy and Grandpa Daryl, made cinnamon rolls, did some computer work, had a stroller ride, a nap in the afternoon, and managed to stay up until 11 again. Today Leah has been cleaning (while Chloe undoes everything) because my co-op student from high school is visiting this afternoon. Leah is pumped up for this visit and has the day planned yet again. She even wants to take her bike to the bike trail to ride while I push Chloe in the stroller. She is starting to get a bit of fuzz growing in. Some spots look pretty dark to me, and others look blond, so it will be interesting to see what comes in. I know she wants blond hair, but we will take whatever we get and be happy with it.

I have been enjoying having some time off, too. I feel like I missed out on a lot of fun things with Chloe this past school year, and she is talking up a storm and has lots of silly ideas. I am finally finishing my knitting project I started last summer. Now it will be a sweater for Chloe, though, instead of Leah. I am also being pushed (by Leah of course) to get caught up with scrapbooking. So, someday I have to get that mess sorted out.

Again, we thank everyone for the prayers, emails, cards, and phone calls that keep coming. Please continue to keep Leah in your prayers as we face another Iowa City testing day next week and are hopeful for God's continued healing here on earth.

Thursday, June 15, 2006

June 15, 2006

AFP = 6.1

We left for Iowa City early this morning-with a bag packed just in case. Considering Leah's counts are very low I did not want to get there and not be prepared. We stopped in North Liberty to do our whole emla cream routine and then were still 30 minutes early for our appointment, so we had a cinnamon roll at the Java Hut. Once at the clinic we had Leah's port accessed and blood drawn. AFP was the test we were worried about, but her electrolytes, hemoglobin, white count, and platelets along with liver and kidney function tests were run. Hemoglobin is still going strong at 10.5, platelets are low at 32,000 (they transfuse below 20,000-although before their platelet shortage they transfused below 50,000), and white count is very, very low. The good news that we were waiting for was the AFP. Last time it was 11.3. The normal range is 0-8.9, and because it is within normal, they are not planning on more chemotherapy. Before we left they decided to tack on a hearing test. Leah's last test was done in January, and the results today were the same as then. She does have some high frequency hearing loss. They explained again that she should be able to hear fine except in noisy situations-like an auditorium or lunch room, although it was explained that each year her school hearing test will probably always come back that she has failed. One of the drawbacks of chemotherapy is its ability to hurt good things as well as bad, so even though it helped kill cancer cells, it also hurt Leah's hearing, too. We will be going back to Iowa City on June 29th for an echocardiogram and CT scan. They would have done the echo. today but I was quite insistent it be done with the CT under general anesthesia. It was suggested they could use chlorylhydrate or versed.....apparently they don't remember the CT scan fiasco from December when they kept pumping her full of these sedatives and she became more and more agitated instead of more and more relaxed. I don't know that they expect to see anything in these tests, but it is another thing we can worry about and pray to come back with no surprises for us.

Finding computer time is getting to be hard work. Leah has the whole computer use thing down pat. She knows how to get on the internet and use all the bookmarked favorite sites. Since we have been gone all day I am taking up her valuable computer time (or so she thinks).

We are praying for her counts to rise quickly and for no infections! Leah is ready with a new Grump Day shirt to go to the Readlyn Days parade. Drea comes back from a short vacation tomorrow so that has already been lined up on her agenda of things to do.

Thank you to everyone for the continued prayers, cards, and phone calls we are receiving. Please keep praying for an AFP to stay in the normal range forever and ever, amen.

Sunday, June 11, 2006

June 11, 2006

Our family just got back from a wonderful picnic at the Schaefer's with the people that helped with Leah's benefit. Leah had a great time. Just a little over a week ago she was lamenting the fact that she was missing the Relay for Life --stating that she always misses everything for her (meaning her benefit and the Relay). I would say the picnic today was by far more fun for Leah than the other two events would have been for her. She jumped on the trampoline, played with Sparklers, some of Joshua's farm toys, and enjoyed the special attention. We can certainly tell that Leah's counts are going down. She has seemd a lot more tired in the past day or two. This is all part of the plan, but after we had to drive her to Iowa City last time when she had pseudomonas and was really sick, we plan on watching closely and taking her if there is even a hint of a fever. We have been taking showers a bit more faithfully, using antibacterial soap and scrubbing a bit more, too, since we don't want that infection again if we can help it.

Wednesday is an Iowa City clinic visit. This is all for an AFP check......please, please, please pray for a normal AFP. We are so, so close, but not there yet. They are checking it Wednesday to see what we need to do next. Right now the plan for Leah is up in the air. They have assured us that this is perfectly normal at this stage in the game. Everything is dependent on individual response to medicine. We still are praying that the chemotherapy drugs are working and knocking the AFP down into normal range. Leah has felt good, which has been fun--she is full of energy. We are usually up around 6, a brief afternoon nap, and then to bed after 10--sometimes 11. That is not much sleep for any four year old-even without chemotherapy.

Friday was my last official day of school. I will have to go back a bit to get things organized for the fall, but am happy to be done. I am also extremely grateful that Leah has felt well enough these past few weeks that I could work and finish up my year. I brought Leah with me for half a day on Friday-she enjoyed meeting people and helping me. She talked about doing that all week. She also got in a shopping trip with my mom to sit in the big chair at Simpsons Furniture (something Chloe got to do while Leah was in the hospital, and Leah mentioned several times the desire to do, too).

I promised Leah this would be a fast post since she is just sure she will never get on the computer tonight. Tonight at the picnic we are reminded again how the support of so many friends has helped us through these past six months. Thank you does not seem to adequately express how much that means to us, and we sincerely hope that someday we can repay the kindness that has been shown to us.

So, please keep praying.....we are longing to hear the word "remission" right now. We need a normal AFP ---that stays there forever!

Tuesday, June 06, 2006

June 6, 2006

Hey, how about some pictures!

Leah, Chloe, and their cousin, Drea

Each year 1.3 million Americans are diagnosed with cancer, a figure expected to double over the next fifty years because of population increase and longer life expectancy. The odds are that most people will know someone who has been diagnosed with cancer (I read this somewhere). This leads me to say a special "THANK YOU" to all who organized and were involved with the Bremer County Relay for Life this past weekend. Though Leah was not able to attend, the survivor lap is waiting for her next year. Please pray for continued lower AFP counts for Leah and healing - both physically and spiritually to all cancer patients.


Friday, June 02, 2006

June 2, 2006

I promised everyone I talked to yesterday that I would not delay posting the AFP results. Usually they have taken hours to get the results back (maybe because with numbers in the hundreds of thousands it takes a long time to calculate), but her number is so much lower, it was back in 30 minutes. Her new AFP is 11.3. Still not "normal", but getting much closer. We are only 2.4 away from normal. Now of course I can worry for the next two weeks about whether the chemo. drugs are working, if the AFP is stagnating, or going up, or just not doing what it needs to do. UGH! However, had it been normal today we would not be doing chemo. That would be good, except I am all for killing every shred of cancer in her body, and if another round of chemo. will help with that, I am all for it. She tolerates the chemo. very well, so even though we know it is killing good things in her body along with bad, we also know she is a tough cookie. We are hoping to start chemo. soon, otherwise we will be leaving Monday morning. If that happens I am pretty sure Leah will want to shop on our way home. She has already told me how boring this place is today since she is hooked up. Our laptop is having a little technical difficulty right now, so I am in the hall using the one we all have access to. Liz, Leah's Dance Marathon friend, is coloring with her. We also had a nap since we were up quite early and did not sleep well at all last night.

The floor is busy today- 22 of 24 beds are full, so we have a roommate. I doubt we get to be friends, because they only speak Spanish. Oh,well. The little girl is adorable. Child Life has already talked to me about the party they have planned for Leah when she finishes chemo. for the last time. However, since we don't know when that will be, we are holding off. It would be more depressing to have a party and then have to come back again.

We are so close....we can feel remission and "normal"life, but we are not there yet. I have said many prayers of thanksgiving myself for the continued effectiveness of chemotherapy, but in the next breath am asking God to please, please let this continue to work and let Leah's AFP continue to fall quickly-and remain normal for forever. We thank everyone for their continued support-phone calls, letters, cards, and most important your prayers that we still need very much.

Thursday, June 01, 2006

June 1, 2006

The past few days we have been enjoying some beautiful weather --taking stroller rides, playing outside, and getting to wear summer clothes. Leah seems to feel great. Her counts were good on Tuesday when we had her port reaccessed, so I am sure that helps. I have been at work on a more regular schedule lately, too. Since it is the end of the year I have a lot to do before I can think about vacation.

Tonight we are preparing to pack for yet another trip to Iowa City. I am dreading this trip but Leah seems OK with laying things out and picking DVDs, books, and other things to occupy herself. It is harder to want to stay there when she feels good and the weather is beautiful. This time she will be hooked up for the entire time we are there since the chemotherapy drugs drip in continuously over 48 hours. It is still debatable if we will be home late Sunday or Monday.

The dreaded AFP will be taken tomorrow morning. I have seen many people today and everyone has asked about that--so please, please pray for a NORMAL AFP reading. It has been dropping quickly, but needs to. This her tumor marker and we will not be done with chemotherapy until it is in the normal range.

Since both girls have now disappeared upstairs together I need to investigate what could be happening. Leah invited Chloe up there to help pick out some clothes and get things packed for Iowa City. What a tough cookie and trooper to happily pack her things without complaining for a trip to the hospital. We are constantly amazed by her courage and spirit during this chapter in her life and continue to pray for her to be healed here on earth.