Steroid craze

It is becoming increasingly more challenging to manage Maggie throughout this bout of steroids. In the last 12 or so hours, her demeanor has taken more of a hit. She is very hard to please and is beginning to do her loud-pitched whine constantly. Her sleeping has also become affected. She awoke this morning at 3:30 and didn't get back to sleep until close to 6:00. During those hours she ate cantelope and chips, had an explosive poo, and watched cartoons. I was the fortunate one to be able to sit up with her during this obscene time of day.

Maggie's counts were checked this morning and are looking pretty good. Her potassium was a bit low, which we have found to be the case on Monday labs. I'm hoping that it is due to the chemotherapy versus any diarrhea. We have been able to manage her diarrhea fairly well, with the exception of today. She has been going about once a day for the last couple days. We will gladly take this, especially since last month on steroids caused higher frequency and more liquidy stool.

Maggie will be re-accessed on Thursday afternoon, along with another lab draw. We choose the afternoon because after her night TPN, I will be de-accessing her and hopefully we might be able to enjoy an outing to the pool for the first time. I'm going to look at some possible locations for swimming and hopefully we'll be able to take her. Either way, a several hour break from the dressing will be good as Maggie's skin is experiencing burns due to her sensitivity.

Please continue to pray for Maggie, that the steroid week will quickly come to a close (she has 2 more doses), that her mood will lighten, and that she is completely healed of cancer. Please also pray for all the children who have also been diagnosed with this ugly disease.

Steroid week

We are half-way done with this round of steroids and we are beginning to see the effects. Maggie is starting to become very impatient, harder to entertain, and has a whiny disposition. This is to be expected, but it is never fun. We will be finishing steroids on Tuesday morning and hopefully by about Thursday, Maggie will be close to her normal self.

Maggie went in for chemo and her monthly anti-pneumonia infusion on Thursday with Andy. Dr. French was very happy to see how Maggie was doing (it had been 2 weeks since she'd been in the clinic-- I think our longest stretch ever). Her counts remain good and where they want them to be throughout Maintenance. Maggie had gained 4 oz. and now weighs 24 lbs. 4 oz. They are happy with her weight and nutrition, and her potassium and hydration levels looked good.

It was decided that as long as things continue to go well, Maggie will be taken off of TPN in 10 days. We have already started the process by cutting her TPN dose in half. They will continue to wean her off, as to take her completely off at once would affect her sugar levels.

We are very excited about this news. We look forward to the day when Maggie doesn't have a tube coming out of her body. We would love to give her baths again and even take her swimming for the first time. Each day she seems more excited about water as she plays in the sink with her feet while brushing her feet and opens the shower curtain while someone is taking a shower.

Of course I do worry that with Maggie going off of TPN, she will not stay hydrated or nourished. Maggie doesn't drink a lot now, but her dietitian has said that she has seen kids once they no longer have TPN running, they begin drinking again. I hope this might be the case. Maggie also has become picky with her eating again. She will not eat a meal that is put in front of her, but instead grazes on chips and salty foods all day long. I am sure much of this has to do with the way things taste due to the chemo, and we are also in the stage of toddlerhood where children are naturally picky. Lucky us.

Our next appointment with the doctor is not until August 10, when Maggie will have an LP (spinal), chemo injected into her spinal fluid, chemo through her port, her monthly anti-pneumonia infusion, and the start of steroids once again. Maggie will be getting bi-weekly visits from home care to draw labs until she goes off of TPN, so we will not feel entirely cut off from the medical world.

Hopefully during this break of going to the clinic (though she will continue her weekly physical therapy, or should I say 30 minutes of screaming), Maggie will continue to grow in her motor development. We are also looking tentatively at taking a family vacation during her time off at the clinic. This has been much needed as we have had a very long year and haven't had a vacation since before Maggie was born.

We pray that Maggie's transition off of TPN will go well, that she will gain an appetite to eat & drink, that her gross motor skills will continue to develop, and that the cancer is completely gone.

Crawling up steps

Though I realize the video is quite dark, it still documents one "step" closer to learning how to walk.

Maggie & Brendan

Here is the video of Maggie & Brendan playing with a drum and communicating with each other.

Inch by Inch

We can check one more thing off of the Maggie milestone page. She surprised us both tonight by crawling up the stairs all by herself! Last week, I showed Maggie how to crawl up the stairs and I think I mentioned that the first time she did it, she cried the entire way up. The second time, she was more willing (not much, but just a little) and actually crawled up the last stair by herself. We took a weekend break off of stair climbing and then this evening, she just cruised right on up. This girl continues to amaze me with what she can do (but more so, when she is willing to show us she can do it). I have mentioned before it's all about motivation. We just need to find what is highly motivating.

Maggie is cruising the couches and bathtub more and is able to stand herself up when given a low object to push off of. I don't believe she has gathered enough upper body strength (or maybe figured out how) to pull herself up onto objects yet. She will get on her feet with me only holding her hands, which is a vast improvement as well.

Though these are tiny steps and may seem insignificant to you, they are hurdles to us. We are watching Maggie gain more and more strength everyday and we have wanted to be able to see the finish line of walking for a LONG time. Though it is in the distance yet, we are slowly making gains and we are very happy that Maggie is showing interest. It goes to show once again how good she is feeling.

This Thursday we go back into the clinic for an IV chemo, monthly anti-pneumonia infusion, and we begin the week of dreadful steroids. We are not looking forward to this as we will most likely see our happy, independent Maggie drift away for about a week. But hopefully after this dose of steroids, we will be able to pick up where we left off.

We continue to get good reports about Maggie's lab work-- all within the normal range, which we are thrilled about. Please continue to pray that the cancer is completely gone from Maggie's body and will never return.

*On another note, I have video of the stair crawling, but am dealing with the same technological difficulties as Maggie's drum playing. When we get it worked out, there will be several videos to view, so check back soon.

Happy 4th of July!

Happy 4th of July everyone! Today Maggie and I went to my Lehman side of the family to celebrate the 4th of July. Andy stayed home to work on revisions of his dissertation. We had a very good day with lots of smiles from Maggie. She even allowed a few others to hold her, which is always welcoming.

One of the highlights of the day was watching Maggie play with her cousins, Brendan and Leah. Maggie had so much fun interacting with them and especially playing Great Grandpa and Grandma's percussion instrument. As Maggie and Brendan played, Brendan also asked Maggie to repeat words that he would say. She would do so and he would giggle. It really was a good time. I have a video of this as well, but am having some technical difficulties, so until I can get the video up, I thought I'd share some pictures.

We enjoy the normalcy of life and celebrating holidays with family. Last year we had to miss out on this celebration because Maggie was in the hospital. We pray that we might never see hospital walls again except to visit others.

The week in review

We continue to have good days. Maggie had her labs drawn yesterday (she gets them twice a week because she is on TPN. They want to make sure that Maggie's liver functions are good since TPN can harm the liver). With her TPN labs, they also draw a regular CBC. After talking to the nurse, her numbers are right where they like to see them. Her white count is at 2000-something and her ANC is at about 1500. These are the numbers they try to keep children at in maintenance. Maggie's potassium and glucose went back up as well (they were a bit low on Monday).

Along with the lab draw also came another re-access of her port. I was able to de-access Maggie earlier in the morning (taking the needle out of her port), so that she could get a bath and be "free" for a couple of hours. She hadn't bathed in 2 weeks, so it was much needed, especially after all of this food Maggie is snacking on all the time. Maggie has not enjoyed one re-access yet and knows immediately when it is coming. It's difficult to watch them do the procedure, but in the long run, the port will be beneficial as Maggie will be able to experience water whenever she wants. We just have to get to that point when she is not always being accessed.

Maggie is continually getting stronger. She has begun to allow us to hold her arms as she "walks." Though it doesn't last long, it's a start. She was doing much more of this before her last heavy dose of chemo. She is also beginning to "cruise" while holding the bathtub or couch. It's all about motivation to her though. Cruising (walking while holding onto something) and balance are what we are currently working on with the physical therapist. We just need to continue our good days and I think Maggie will make great strides in her walking.

Finally, I am posting a few pictures from this week. Since Maggie has been in such a good mood, I am trying my best to get pictures of her. Enjoy!This picture was taken 2 weekends ago at my aunt and uncle's house. Maggie loves animals and enjoyed watching the cows eat. She even had the courage to pet their ear!

A nice smile from Maggie-- one of the first pictures of us where we are both actually smiling.
Dr. Maggie Bixler in the making. Maggie found these items and immediately knew what to do with them. She needed help from us to get them on, but continued to take them on and off. Amazing what children pick up and yet sometimes a bit sad. She also has learned where the plastic needle tip goes when giving her "tubie" medicine. That one needs to be monitored though as she can create a big infection if the needle actually were to go in.
My mom will be grateful for this picture (since it relates to cleaning). Maggie is learning the tricks of the trade and enjoys sweeping our floors. Starting early...
Here's another picture of Miss Maggie helping me out. You'll notice that she has gained quite a bit of weight since the last pictures that were shown. It's nice to not see her skin falling off of her bones anymore. Maybe one day she'll again be within the 95th-percentile for weight and height (highly doubtful though). Regardless, we'll take any growth we can.