One more done

I am counting down the number of steroid doses we have yet to administer. We are down to 10 weeks-- 10, 5-day doses of steroids (5 days each month) equaling 50 more days. This week's dose of steroids was not kind to Maggie. She had 3 bad days and we are still waiting for the effects to wear off.

Crazy enough, Maggie grew constipated this week. We talked with the nurse yesterday and she advised that we get Maggie a laxative. I couldn't even believe the conversation we had. Never have we had this problem. It really seems like we are unable to have a happy medium.

Maggie went several hours after we gave her the laxative (never was it difficult for her to pass though, which is kind of strange), but this afternoon (almost 24 hours post laxative) she has flowed once again. After 4 diaper changes, we have gone back to our old ways of liquid poo, and so in less than 24 hours, she has once again gotten Imodium. We can't quite win, can we.

We look forward to the time that Maggie begins to have energy to move around the house once again. We also look forward to her talking and smiling. We hope that it is not too far off. Thank you for your continued prayers for Maggie.

Bad Day

It has been a pretty bad day for us. The steroids seem to treating Maggie worse this time around. She has moaned and cried much of the day. She seems to be in discomfort, pain, or just feeling pretty crummy. We finally decided tonight to give her some Tylenol, hoping this might help. I'm not sure that it did, but eventually she was able to eat a peach and popcorn (her favorite right now is cheese popcorn) and drink some water.

It is so difficult to watch her this way and we feel quite helpless listening to her moan. She has not had any stool today, which makes us worry that her belly is aching. We gave her a double dose of Imodium last night after her bad diarrhea. We can't imagine though that she can go straight from liquid to solid.

It has been quite some time since the steroids have caused this much discomfort for her. Please pray that she will feel better soon and they they will wear off quickly. We have 1 more day before the wearing off period begins.

Steroid Week

We are in the middle of our most dreaded week-steroids. Maggie's behavior, sleep and eating has been affected once again. She did not take a nap today in the bed, but rather on either me or Andy. She didn't eat much today at meal time, which I think is because of some nausea. She did manage to tell us that she wanted pancakes for breakfast (she saw it on tv). So she had about a quarter of the pancake.

Maggie is very sad looking- the steroids really affect the way her eyes look. She has layed around most of the day and hasn't had much energy. It's very hard to watch her during this week. Maggie also had quite a bad episode of diarrhea tonight before bed. It's one of the worst that she has had in a long time. I think it might be my fault as I allowed Maggie to drink 2 glasses of orange juice. She really drank a lot today and I was excited to see the liquid intake. Unfortunately, it might have ended up biting us later.

Please pray for Maggie, that she can get through this week (as well as us). Pray that the diarrhea she had tonight was only a 1-time thing, that she will sleep better, and feel well enough to eat.

All is well.

Today's appointment was a success in many regards. Maggie's weight is actually up a smidge (23 pounds) from where it was before our trip (though down 1.5 pounds from her peak on TPN). This is good. We've just been working really hard to continually offer her food. We have tried to offer the most calorie-rich foods that we can as well. We searched all of the butter at the store and bought the one that was the most calorie-filled and fattening. We've replaced her milk with half and half then we often add weight-gain supplements. Juice is provided minimally (to stay away from diarrhea) but we now mix a little bit of the most potassium rich juices with pedialyte to maximize electrolytes. Every food is thought out and has a purpose. We spend a lot of time working to get her to eat as much as possible. So, up a few ounces is good (we were convinced early on our vacation last week that we'd have to go back to TPN or a feeding tube. Her food intake wasn't what it should have been, and her diarrhea was flaring). We'll keep after it.

Maggie's blood counts were good, and Dr. French was happy. He joked that we brought a stranger into the hospital today as Maggie is looking more mature and is growing hair. We enjoy thinking about the progress that Maggie has made. In terms of her bloodwork, everything continues to be on track. Remission worries will have to wait for another day. This is the best news of the day, of course.

Maggie's spinal went alright and all of her chemo was delivered without incident. She was a bit tired today after the procedure, with good reason. But she recovers nicely enough that one could forget all that she went through today. We're very blessed to have such a strong girl.

So, thanks for your concern as we jumped another hurdle today. It is hard to wait longer periods to get the assurance that things are looking okay. Today, Whitney asked if we would get weekly labwork done as we move forward. Dr. French, instead, said that he'd see us in a month. Wow. The comfort of getting checked will be gone, but we'll try to enjoy the freedom.

At the hospital, we saw old friends fighting leukemia, and we are constantly reading updates of other young leukemia fighters via the internet. Occasionally, we read about a family that is experiencing the unthinkable task of preparing for the death of their child. Unfortunately, today was one of those days. With all of these reminders of different stages of treatment, we should stress more that it is important to ask for prayers for all kids with cancer and for those researching ways to treat it more effectively. Thanks.

Bravo to Maggie!

We're Back

We returned home from Chicago on Friday night, but have not stopped going until this evening. We had family visiting our house from Friday to Sunday due to my big 3-0 birthday today. Andy surprised me with my whole family on Saturday and we spent the day eating and visiting. It was nice to see everyone and again give Maggie an opportunity to play with her cousins.

We enjoyed Chicago and were a bit sad to leave, but Maggie was definitely happy to be home as she immediately began crawling around the house. We will be sharing pictures of our trip and stories of where we visited as time goes on. Hopefully it won't be too boring for you, but I see this as our scrapbook of Maggie's life.

Tomorrow is a big day for us. It has been 2 weeks since Maggie has had her counts checked and tomorrow is the day. Maggie will be going in for a spinal, chemo in her spine, chemo through her veins, an anti-pneumonia infusion, and the beginning of steroids. Like always, I worry about Maggie's blood counts and the worry of relapse. This will always be a worry, but like I've said before, when you aren't having counts checked a couple of times a week, it is even harder. I am also worried about what her potassium and bi-carb (hydration) levels will look like, as well as her weight. I feel like tomorrow will be a monumental day-- one that we can either move forward knowing that Maggie is maintaining on her own, or one that will take us back to our previous nightmare. So, please pray that everything goes well tomorrow-- Maggie's counts, levels, and weight will be right on target for where she needs to be.

Finally, I posted a picture of Maggie on our trip to Chicago at the beginning of the post. We tend to have a hard time getting Maggie to smile at the camera, but this one was a rare shot. We stopped in the Disney store on Magnificent Mile and Maggie found stuffed Mickey and Minnie Mouse. This gave us smiles and she even managed to cruise (walk) while holding onto the edge.

As I reflected on this day and looked back a year ago and the memories I had then, I realize we have experienced a lot this year. Last year, we were in the hospital while Maggie was infused with a very strong chemotherapy that gave her mouth sores. This year, we were able to have a summer, take Maggie on her first vacation (and definitely not her last), and be out of the hospital to celebrate birthdays.

Whenever you have a birthday, people always ask you as you blow out the candles, what you wished for. And of course, you are not supposed to tell anyone your wish or it won't come true. Though I didn't have any candles to blow out this year, I still have a wish, and I won't be sharing it with anyone.... But, I bet each and everyone one of you can guess what it is. And I pray that it comes true.

Chicago Update

Just a quick update-- We don't have internet access in our room, so we must go to a corner bakery next to the hotel to check the internet.

Maggie was up last night at 2:30 wanting cream cheese. This is her new staple it appears. After trying to get her back to sleep, I eventually gave up and gave her the cream cheese. She was wide awake and wanted to watch t.v. (one of her new words). We gave her some of our Frappuccino yesterday (she likes the whipped cream, but also the strong coffee taste I guess). I of course gave her some since it was liquid and mucho calories. I think it ended up biting us in the butt. After Andy took her down to the lobby and for a walk around the hotel, around 5:15 she finally went back to sleep. Not a very good night sleep.

Though we are in a king sized bed, it's amazing how much Maggie has become a worm in the bed and wiggles all over the place. She also has become a cuddler (or a moocher perhaps of the bed) and lays next to one of us (most often I'm the lucky one) and practically pushes us off the bed. My sleep hasn't been very good lately. I'm thinking we need to figure out how to transition her to her own bed eventually.

Maggie's diarrhea has come back a little more feriously today. She had a very saturated stroller seat. We are trying to combat it with Immodium, but we are running out. I don't know how good of a job the Immodium is doing. It seems like a losing battle to us.

All and all, things are going pretty well. We are enjoying the sites of the city. One little bummer is that Maggie wants nothing to do with Andy right now. He basically is her gopher-- "Dada, more train." "Dada, cheese." You get the point. Andy is getting quite down about it, with good reason. It is a bit of a spiral because I end up taking the brunt of the load-- carrying her around the city (she is not always a fan of the stroller), carrying her to sleep, etc. It ends up wearing me out and in turn I get a bit edgy. So, I just hope for Andy's sake, that Maggie will soon warm up to him once again.

Please pray for Maggie that her diarrhea will go away and that her hydration will maintain at a good level. Please also pray that she will keep eating. It is such a struggle for us still and we can just see all of those added pounds from TPN slowly disappearing. Thanks so much!

Chicago

We are in Chicago. We left yesterday afternoon thinking that we would arrive in Chicago after 5 hours of traveling, but Maggie got a bit impatient after 2 hours, so we had to take an hour break at McDonald's to regroup. She did fairly well in the car after our stop (thank you Aunt Judith & Dallas for the Totoro movie-- it was a lifesaver), but we had our moments of craziness. As we arrived in the heart of Chicago, Maggie decided to have a pooping episode all over the car seat, while Andy wasn't sure where to go. It was a bit chaotic and wild while Maggie told me she was going more and Andy was asking me to look at the map. I had one of my moments, to say the least. Finally around 8:00 pm or so, we made it to our hotel in downtown Chicago.

Maggie has been doing fairly well. As of late, I have noticed her acting a bit more lethargic-- laying her head on my shoulder, on the ground, and even napping in her stroller today after awaking 3+ hours after sleeping. I worry, wondering what it could be. It's a luxury to not have her counts checked this next week, but with that comes a bit of worry, wondering what her counts might look like and whether they could be causing this behavior.

We are trying to push food on her, though she just isn't very interested. I did get her to eat a bit this afternoon- she had 2 Ho-Ho's. Fairly good on the calorie end, but not the healthy end. Please pray that she eats and drinks enough to nourish and hydrate her body. Also, please pray that we will have a wonderful vacation with no surprises or trips to the hospital. Pray that Maggie remains healthy and that her cancer is completely gone.