May 29, 2006

Happy Memorial Day! Leah was up at 6:10 AM (right after I gave her her medicine). She wanted to be sure to catch the Today show since we are down to Katie Couric's last few days. Too bad that Katie has the day off. So now Leah is working on an art project. We have also made some cinnamon rolls for breakfast. Chris has started running again and is on an early morning run right now.

Basically, we have had a week of being normal-aside from hooking Leah up for medicines 3 times a day and being on a pump for an hour a day. Still, it is so much better than being in the hospital. Leah has felt very good-she has been so busy. Chris took her jogging in the jogging stroller one day this past week, she has had school with Mrs. Larson, gone shopping, taken stroller rides, celebrated Chris' birthday on Wednesday, baked cookies, and done her usual organizing. We go back early Friday morning for more chemo. That will include an AFP test. I have been worrying, calculating, and praying that the numbers have gone down dramatically yet again. We really need for this drug to still be working and killing any live cancer cells in her body. I should be banned from looking on the internet because there are so many stories of children with AFPs that don't go down to where they should be. The whole idea is very scary. Please keep praying that her AFP is normal-or at least very, very close. As I said, she feels good right now-it is impossible to believe there is something as evil as cancer lurking in her body.

Our plans for today are none too exciting-going to the parade here in town, cleaning a bit, and maybe some baking. It is going to be sooooo hot outside today that even though I would love to be outdoors, I don't think we will last there for long. Tomorrow it is back to work for me-just half a day since Leah needs to go to Covenant to have her port reaccessed.

Please, please keep praying for the AFP level to be NORMAL! We continue to rely on the prayers of thousands for Leah's complete healing on earth.

May 23, 2006

Back home in Denver....

Leah is feeling quite good and we walked/rode trike at the hospital this morning, and rode trike all over our floor. Leah's path included behind the nurses' station where they were working-she had plenty of energy to burn. Everyone knows she feels fine and her counts are good, but the test was whether the lesion she has is healing. Dr. O. saw her on rounds today and thought it looked much, much better. So, she gave the go-ahead for us to leave. We still had to wait for the home health agency to drop off our antibiotics. The one drawback is that Leah is home with her port accessed again. I hate this, but I guess we are more used to it and know how to do the meds. without worrying about it. And, it is better than staying at the hospital trying to entertain someone who feels great. The other drawback is that we were supposed to start chemo. this Friday. I am all for giving any cancer cell no time to grow or multiply in Leah's body. But, since she needs antibiotics which are not compatible with the chemotherapy drugs, we have to wait. The next round is now scheduled for June 2. Of course I am very nervous about this and what that AFP test will show. So, please keep praying for all cancer cells to die and a NORMAL AFP.

Chloe and my mom came to pick us up tonight. Chloe enjoys the hospital a lot and she and Leah took a short trike ride and then ate the supper that the Olive Garden brought for our floor tonight. Each week a meal is brought in from an area restaurant all as a part of someone's Boy Scout project. I am hoping our hospital time is nearing an end, but it is wonderful to see Leah acting like herself with the nurses, doctors, and others we see there. Tyler, a Dance Marathon-er, finally got Leah to talk to him. He really should feel good because she even went to activity with him on her own while I showered and met them later. My brother, AJay, his wife Anna and their baby Drea came to visit us-and bring us more supplies that we had requested before we heard we were going home. Leah took them on a walk and showed them many different parts of the hospital. We also had Leah's port needle changed today. She did an AWESOME job with this. She still does not like this and her skin is so sensitive to the tapes they put on that they itch and break out, but as far as getting poked, she is very brave and did not shed a tear today.

Leah's medicines are almost done infusing, so we have to finish her oral medicines, and head to bed. I already know that the morning cefapime dose at 6 AM will not be met with much excitement.

Please pray for a NORMAL AFP, for Leah's infection to clear up (and not return again) and for chemotherapy to be effective at killing all cancer cells in her body.

May 22, 2006

I am sure everyone has been waiting with baited breath to hear our AFP results. Chris had to remind me last night when we talked that I had yet to post them. Leah's AFP was drawn on Saturday morning (5/20). I told DeeAnn our nurse to say a prayer over that little vial of blood before she sent it to lab. These results never come back very quickly and they continue to be something I can barely handle knowing and not knowing. When Becky our nurse was pulling them up on the computer in our room I was looking over her shoulder, but told her I would probably pass out or have a huge meltdown if the AFP was higher. Right now Leah's AFP is 45. On May 5 it was 464, so it has made a 90% decrease in 15 days. I think everyone was very happy with that. I am and so is Chris. It is still not 0-9, but we are getting closer. If we follow the half life of 5-7 days that we have been, her AFP was 464 on May 5, should have been 232 on May 10, 116 on May 15, and 58 on May 20, so we are slightly ahead of the half-life. We still need prayers to have the chemo. continue to work--we need the AFP to keep dropping just as it has been right back into the normal range.

Leah is feeling good -and has - for the last few days. She has pseudamonis, which is what we anticipated after her infection last time. I am not sure when we will get released. There will be a discussion about it today, but I need to make sure the lesion in her crotch region is looking better, and right now it looks slightly better, but (not to gross you out) still has a circle of pus in it. This is still causing her discomfort at times, and I can certainly see why when I examine her.

Leah got blood on Saturday because her hemoglobin was down to 8.0-- they transfuse below 8. It is now 10.7, and she has been a wild child wanting to go for walks, trike rides, and ready to run around. She is riding her trike up and down the hall now yelling for James. She has decided to call him "Jimmy" much to his annoyance, which is of course why she does it. I don't really even need to watch her since I can hear her yelling for him in her little munchkin voice.

Yesterday my sister visited and took Leah for a walk, got us Chinese food, and brought us a few other supplies. Chris was also able to visit very briefly. James was very glad to see him because he had dropped his cell phone in our car when he went shopping with Chris and this way he could get it back--it is amazing how hard it is to live without technology.

We are still waiting for the doctors to round. At this rate we will be here til tomorrow for sure. Please keep up all of your prayers.....for a NORMAL AFP and for Leah's infection to go away quickly and an uneventful third round of chemotherapy to start so that any remaining cancer cells can be killed quickly.

May 19, 2006

We are back in Iowa City. Earlier this week we had several days of lots of activity and feeling good. On Tuesday morning Leah pushed Chloe to the post office and back in her stroller. That was quite a workout considering she has been very sedentary for the past few months. She has enjoyed some stroller rides, baking projects, and visiting Grandma and Grandpa Behnke at the farm.

On Monday when Leah had to have her blood work done we knew her counts were getting lower. At that point we started GCSF shots because her white counts were so low. Her platelets were also at 160,000 (a drop from 336,000 the time before, but still normal). Leah had a good day on Wednesday, but yesterday when I took her for blood work I could tell she felt pretty tired out and miserable. Her counts were lower-platelets were only 29,000 and her white count had dropped a bit more, too. Her hemoglobin had actually gone up to 9.4 (from 9.1 on Monday). Leah had wanted to go to Olive Garden for lunch and shopping for Chris' birthday, but as soon as we had her blood drawn she wanted to go home. So, we drove home with Leah falling asleep halfway there. As soon as we got home we went upstairs and napped for a while and then got up and Leah wanted to nap some more. Obviously this is very abnormal for Leah--in fact, recently she has been getting up before 7:00 in the morning (sometimes even before 6) and going to bed after 10 or 10:30 each night. So, we waited until Chris got home from work and then re-evaluated. Our Make A Wish meeting was set for 6 last night and by the time we knew we needed to go to Iowa City we knew that it was also too late to reschedule that appointment. Leah made a good attempt at sitting up and telling them her wish, "I want to pick up seashells by the ocean -and go to Bisney (Disney)", we filled out some paperwork and then quickly said goodybe to them. Leah had a bath before we left where I discovered that she has the same type of lesion (pseudomonis) as last month when her counts were so low. I immediately called Dr. Loew, the doctor on call, and told him we were coming. Chris came along, too, since Friday was his day off this week. Thank goodness he did. We had quite the interesting journey down since the county roads we usually take had detours. Instead of getting on the interstate by Raymond, we had to drive to Dunkerton, only to have a detour there. We had to take gravel for a while and then were finally able to get on the interstate by Jesup. All the while Leah is miserable and we are wishing we could get to Iowa City a lot faster. Chris dropped us off at the door of the hospital and met us up on 7th floor. Luckily we quickly got our room, were checked over and then accessed. They ordered the same two antibiotics as the last time she had this. Her temperature when we got here was up to 103.4, and her blood pressure was only 90/40. They monitored her very closely for several hours, and after a dose of antibiotic Leah's fever broke and her blood pressure went up a bit. Today she feels a lot better, but she still has the lesion on her bottom that we are watching closely. No one knows if her counts are bottomed out or not and if they have not and are still going lower she will not have anything to fight this infection. Her platelets had dropped more just from yesterday morning until lsat night when we got here- they were 21,000 last night and again this morning when they rechecked them. That is extremely low, but they will not transfuse unless they are below 20,000 because of the platelet shortage.

The room we are in right now is rather interesting. I noticed it instantly when we arrived last night. I call it the rain forest room, but it sounds as though a shower or toilet is running constantly and that there is water cascading down the walls. Leah has fixated on this aspect of our room and finds it quite annoying. I will admit it is hard to ignore. Especially since it is loud enough to keep us awake. I certainly cannot say any of us feels well rested after having blood pressure checks every 15 minutes for a while, then every hour, temperature checks, change of medicines, and a very loud noise added to that.

So, it looks like we are here for a while. Even though we think we know what the problem is, we still need to make sure medicines are working, that her counts come back up, and that she is fever-free for 72 hours. Dr. Vibahkar and Dr. Ellen rounded today and did not have much to tell us beside their looking her over and discussing our need to watch her infection closely to make sure it is getting better and not worse.

While we are not excited to be here, we know many people on the floor right now. Anuba is Leah's resident and both she and Dr. Ellen exclaimed about how glad they were to see us. James is working today, Tom stopped by on his break from a class he is taking today and told us he would be working on Monday, and we have had a few visitors-even though we are in isolation and everyone is supposed to gown up when they enter our room.

I am also sure that we will have an AFP check on our visit. This is something I hesitate to ask about. While we need to know the counts, if they go up we know there is active cancer growing somewhere in Leah's body. Many people have highlighted that these numbers are going down....they are, but we have also seen from her chemo. prior to resection that they can just as easily go up. So, please, please pray for a much lower AFP number (remember, we would like to see a normal AFP sometime SOON). Our prayer requests are many, because in addition to a low AFP, we also need Leah's counts to go up and her health to return so we can have another round of chemo.

May 14, 2006

Happy Mother's Day! Today we were up at the crack of dawn (it felt like it anyway) because Drea was being baptized. Church starts at 8, so to get the girls ready to go we had to be up a lot earlier than we normally are. Leah has radar hearing right now, so the moment I am up, she is, too. She has been talking about baptism for days now and was quite excited about it. Chloe had to be dragged out of bed a bit later. Baptism went well and the girls both enjoyed going up front to "help" with the actual baptism at church. They also enjoyed donuts afterward. We did come back and take a nap in the morning since lunch at Anna and AJay's was not until 1:00. There was no way that either of them could live without a nap. Leah also surprised me with two wonderful Mother's Day gifts: a book she had worked on with her teacher Mrs. Larson about me--the things she loves about me (that she can hold my hair), and a picture of me, what we do for fun....she was quite proud of it. Leah also had shopped with Chris for a gift for me--a ring with her birthstone and name on it that will allow for a ring from Chloe to be given to me in a few years, too. Our other highlight of the day was a trip to Dairy Queen and a leisurely drive around the country where we spotted some deer.

Tomorrow we go for a blood draw (port access). Chris is off tomorrow, so he will go, too. As of now we really don't think she will need blood. On Thursday her counts were good-platelets were 336,000, hemoglobin was 9.3, and her white count was fine. By Thursday this could be a different story. I remember how quickly her counts dropped last time---even after we thought they were as low as they were going to go. While I did not expect her counts to be low on Thursday, I was almost upset they were not lower. Her AFP really did go down a lot last time her counts were down. There is no happy medium-I worry if her counts are too low, and now if they are too high.

I have not blogged for a while, but life here has been almost "normal" for a few days. Today Leah decided that Chloe annoyed her twenty times today and was listing them off one by one. Then she added, "I've had it with her today. I'm ready to sell her on ebay." They actually get along fairly well much of the time, but today there seemed to be many moments they clashed about a variety of things.

The highlight of last night was a trip to the OP for supper. The girls had fun and we decided to stop at our friends, Heather and Matt's, on our way home. Right now we are driving our car since our van just got repaired (back from November when we were hit on the way to Iowa City for Leah's biopsy), and the car seats have not been changed back yet. Just as Chris and I got out of the car-me about 2 seconds behind him- he yells at me to not shut the door---just a moment too late. Turns out Chris had just tossed the keys back into the car as he locked the door-and both girls were in their carseat. We tried to coach Leah on how to get herself out, but with no luck. Chris and Matt started off toward Denver to get our second set of keys, and came back after just a minute or two. Chris has locked himself out before and remembered there was an extra set of keys underneath the car somewhere. The girls were not panicked at all, but I was happy that we did not have to wait for a trip to Denver and back to get them out.

Please, please pray for a very low---close to NORMAL- AFP number. (We would love a normal AFP, but that might be a bit much at this point). Please continue to pray for Leah's complete healing here on earth-normal AFP with no additional detours along the way. We still continue to be thankful for the emails, blog posts, cards, phone calls, meals, and gifts we continue to receive. All the support we receive does help us carry on and remain hopeful.

May 10, 2006

We are enjoying our time at home! Leah was up at 7:30 on Monday morning at the hospital and had us go out to the nurses desk to wait for Dr. Ellen to come on the floor so she could send us home. Dr. Ellen arrived just before 8, and Leah got unhooked from her tubes, had her port needle taken out, and then proceeded to walk/run up and down the hall. She and Anuba, one of her favorite residents, had trike races down the hall which Leah proudly claims she won. I am impressed Anuba was able to get on that little trike at all. When I asked Leah if she was ready to leave, she wanted to stay for a while. I guess we can be happy that she is comfortable there and does not find everything about the hospital and this entire experience completely dreadful. She had big plans for our trip home-shopping! We ended up at Prairie Lights, a scrapbook store, consignment store, Old Navy, Barnes and Noble, and lunch at the Olive Garden. The big purchase of the day was a jogging stroller at the consignment store. When Leah fell asleep on the couch on Monday night I was not surprised.

I worked on Tuesday afternoon, which left us enough time yesterday morning for baths, a short stroller ride and walk to the store, and some relaxing in general. We had another stroller ride last night, a trip to Grandma and Grandpa Behnke's, with a visit from Baby Drea while we were there.

Chloe is wearing big girl pants now! She and Leah seem to need to use the bathroom simultaneously so whenever one of them states they are going to the bathroom, the other is hot on her heels. Last night Chloe thought she should read/sing the Muffin Man book to Leah while she was in there. Leah has no time for this: "I would prefer Chloe not read to me. I read my own books." Chloe, happily oblivious, carries on reading anyway.

I am working all day today. Leah is supposed to shop with Chris for a Mother's Day present for me. He is also talking about planting our flowers and Leah has scheduled herself to help with that. We go for blood work tomorrow (just a finger poke). I am guessing by Monday her counts should drop. I don't like her low counts at all, but her last round of chemo. really caused them to drop, and her AFP did, too, so if there is any correlation, I am all for low counts.

Keep up all the prayers for a much, much lower AFP. I think they will check it next week Thursday...and we need a normal reading before Leah even gets to think of not going in for chemo. every three weeks.

May 7, 2006

We are still in Iowa City after being admitted Friday for chemotherapy. I wanted to blog days ago, but Leah has the computer pretty well booked up. She loves to email, shop, play games on PBSkids.org and watch DVDs on the laptop, too. I might get a chance every once in a while to have 5 minutes on the computer if I am very lucky.

Friday's admission went smoothly. We saw Tom in the clinic, and since Leah was accessed already he just had to draw some blood and then we met with Mary in the Middle who sent us up to 7th floor. Right away we saw Dr. Ellen who was back from a month in Des Moines, James, Anuba and a lot of other familiar faces. On Friday night Leah spent a good portion of the evening at the nurse's desk with Rebecca-eating popcorn and talking. Dr. Loew came in and tried to steal some popcorn from her and she had a good chuckle when he scared Anuba. Kristi was her nurse and Roshaun was here, too, so we had a lot of people around us that Leah is very comfortable with. Chris was home alone and kind of jealous of all the activity we had in comparison to his own evening. The rest of the weekend has not been nearly as eventful. The floor has very few kids on it right now. That is good for everyone here and the other kids, but it does not make for time to pass quickly. So, Leah has mentioned she is bored several times. We have sat on the roof, visited with the nurses, done a few art projects, watched DVDs, and tried to kill time. Once again Leah appears to be handling chemo. well. She is getting the same drugs as last time- doxirubicin and carboplatin. I feel as though this round is the big test--did her cancer get smart and decide to not respond anymore? We pray quite fervently this is not the case. I should have posted the AFP results on Friday because we were very happy to hear the numbers. As of Friday her AFP was 464. That is a long way from 668,000 in December and even a good drop from 16,000 on April 10 when her last round of chemo. started. That means (if you do the whole half life of 5-7 days) her AFP dropped 5 half-lives in 25 days--16,000, 8,000, 4,000, 2,000, 1,000, 500 (and we are a little below that). Does that mean anyone here is jumping for joy or thinking this is even close to a done deal? No. Lots can happen. More lesions could appear, chemo. could stop working, her AFP could rise with new cancer growth.....not to focus on too many negatives, but that is the reality we are still facing. We are not in remission, Leah is still fighting this and even with remission we know that as a Stage 4 cancer she is at very high risk for recurrence. However, the doctors like how far the AFP has dropped. I don't even want to suppose at the new number her AFP might show when it is checked again in a few weeks. We still need many, many prayers for God to heal Leah and continue to let her AFP drop dramatically.

Right now we are planning on coming home right away in the morning. Leah wants to shop even though Chris has put us on shopping probation since her dresser drawers barely close. Considering she wears the same outfit (or would) for days in a row she really only needs a few things. As it is now she should change clothes every day at noon just to make sure she even wears everything she owns. She is out with the nurses now showing them her Mini Boden catalog.

Suzanne came for a short visit this afternoon. Leah liked having her here even though we did nap during her time here. We fell asleep at 8 PM last night---this has never happened to us at the hospital, and aside from waking up a few times (bathroom, medicine taking, etc.) slept until Dr. Loew "ruined my day" and woke Leah up at 8:30 this morning. She was not amused at him at all. In fact there was a long stretch of screaming that occurred even after he left. The only person who did think this was funny was Dr. Loew.

Other highlights of our trip include James (Leah now calls him her servant) being summoned on Friday to come and help us with our luggage. He chased us all the way from our room to the van. Leah ran the whole way! This may seem like nothing, but she really has not run much, or even had the opportunity to do this. With her incision I can see her start running sometimes and then stop, so for her to go that whole way, giggling as she went, was great to see. The nurses ordered from Olive Garden for lunch on Friday so I ordered spaghetti for Leah, too, making it 3 Olive Garden lunches for her this past week. We were able to see Stuart, the dog, at activity on Friday and have some pictures taken with him. Leah is back up in weight to 33.5 pounds. This makes me chuckle a bit. When she was diagnosed she weighed 3o pounds and Dr. Rahdi thought she was underweight. Now he sees her and thinks she looks pudgy. So, somewhere inbetween 30-33 pounds there is apparently a world of difference. We may try to reduce her megase amount she is getting since she does not appear to need it very much. I know there is some playing around we can do with that to some extent, too.

We are so happy with the AFP numbers right now.....please, please keep praying for this dramatic reduction to continue each time it is tested, and for chemotherapy to be effective-for her cancer cells not to become resistant, and for her continued good spirits and energy.

May 4, 2006

I am posting early today since Leah has many, many things planned out for the remainder of our evening.

We have had some fun and busy days. I managed to work on Tuesday afternoon and all day yesterday but am off now til Tuesday since we have chemo. tomorrow. Nearly each day we have managed to see Baby Drea. Leah and Chloe both enjoy her, but it is Leah who really likes taking care of the baby. Grandma Karen was over yesterday while I worked to watch both girls and did some playing with them. Today we took Chloe to daycare while Chris and I took Leah to have her blood work done and port reaccessed. It always seems that just about when I think we are finally getting used to all this and feeling more normal, then we are back for more hospital stuff. I will say that the blood draw is no longer quite as traumatic for us because we know what to expect, but I don't think the port access will ever be a non-event. And, the fact that we have nurses who know us and care about Leah is wonderful. However, we would just like to come back and visit someday without all this other poking and prodding they have to do. After the un-fun stuff, we ate at Olive Garden and then shopped at Target and Old Navy. Leah wanted to hit Barnes and Noble, too, but we were already late for her medicine and Drea was coming over. Leah has told Chris that she "can buy whatever she wants." She just says this as a matter of fact but it is not going over very well. Leah does a great job of shopping, though. Not much escapes her and it is rather entertaining to watch.

Tonight we are going to Grandma Kathy's, packing, making cinnamon rolls and doing one last dose of antibiotic and having a bath. We have to be at the clinic in Iowa City by 7:45 tomorrow. Considering we used to have to do that more often when this all started, we should not complain because this is the first time we have had an early hospital morning since her surgery at the end of March. Leah's incision is looking great and the last scab has fallen off. She feels well-her hemoglobin is 9.6, her platelets are 345,000 (quite a recovery from 12,000 just 10 days ago). I am just guessing, but I do think they will draw her AFP tomorrow. This almost makes me sick to my stomach to think about. Any increase means there is live cancer growing somewhere. It is easy to ignore this number and the focus on it while we are home because Leah looks good, feels good, and acts just like normal. As the days to Iowa City approach it is harder to block this out. In some ways something like AFP is good because it is very definitive if you are looking at whether treatment is effective, but in some ways happy oblivion would be OK, too.

Please pray for a dramatically lower AFP (we still have a long way to go til it is normal), for her chemotherapy to be effective, and for the cancer cells not to become resistant. I know that Leah is already on many church prayer lists-please continue to pray for her at church, at home, in prayer groups...we will certainly take every prayer we can get.

Leah's Latest Report

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May 1, 2006

Happy May Day! We have had a busy day. Somehow it has now become difficult to get up early anymore, and the best we could do was to be out the door by almost 10:00 this morning. Chloe went to daycare, Leah and I went to Covenant for blood work and took our friend, Heather, along. Leah's counts still look good- her platelets which were 28,000 on Thurs. when we left have recovere to 227,000 today. Her white count looks fine and so does her hemoglobin- 9.9. So, we are set for chemo. on Friday. On Thursday we have to have her port reaccessed to prevent infection and have labs drawn one last time.

After blood work we ate at the Olive Garden-one of Leah's favorites right now. We also had to make a Target stop to get some more pretzel chunks and spaghetti frozen meals. Barnes and Noble was also on our agenda. By the time we got home we were ready for a nap, but had to wait for her cefapime to warm up for 30 minutes before giving it, so read the new books and then napped. By the time we got up Anna and Baby Drea were here for a visit. Leah was all over that and even got to feed her a bottle. Leah has done a bit of cooking, some playing with her babies and kitchen while directing Chloe's activities. We are almost ready to hook her up for her hour long antibiotic session, which is too bad, because she is very busy right now.

Chloe is finally acting like she is potty trained. We have had two whole days of using the big potty. She does manage to tell us, "I go potty really bad," as she makes a beeline for the bathroom. This is a huge step in the right direction for her. I commented on Saturday that the diaper fairy might come and take the diapers and pullups away. This did happen to Leah a few years ago. Chloe has brought that up numerous times and appears quite worried this might happen to her.

Tomorrow I am working in the afternoon. Sometimes it is hard to get excited to go with everything that is going on, yet just the other day I was at work and was so grateful to have a job that I do enjoy, and hope to enjoy even more in the future when I can go every single day. I don't think I will complain any time soon about getting to put in a full work week and have a normal life.

Please, please pray for a lower AFP--a dramatic decrease in this number and for chemotherapy to continue to work without Leah developing a resistance to it. I am almost certain they will check this number again-something we want to know, yet don't want to know.