Transitions

Today began a new day for all of us. Andy began his first day of a year-long internship in Cincinnati (the last requirement to receiving his doctorate degree). With this comes a lot of transitions for all of us.

Since Maggie was diagnosed, Andy took a year off from school and so there was always one of us with her. My job was very nice in that I could do a lot of work from home, so I was able to be home and at the hospital with Maggie also. So, in essence, Maggie has had both of us at home for the last year, and Andy and I have been there to support each other as well. This will no longer be the case.

Andy's commute to Cincinnati is about an 1:20 minutes and so he will be having long days. He actually got home tonight and was very tired (this is the first day in a long time that he has worked an 8 hour day). I will be taking on most of the care of Maggie, which in the past 5+ days, has been quite wearing as Maggie has been very needy and clingy. I have been "unemployed" this summer, though working part-time teaching at the college, but hopefully (for money's sake, not time's sake) my grant will be reinstated soon, so that will change as well. With that, I will try as hard as possible to be with Maggie during the day and then will work evenings and weekends. Regardless, things will be very tough for all of us and we will all be pulling long days.

Today was my first full day of taking care of Maggie and after having Andy around for a year, I took for granted the help and support that he provided. For example, my day began at 4:45 this morning when Maggie woke up to tell me that she needed "washed." Her diaper had once again betrayed us and she had wet through her clothes and onto the sheets. Rather than clean the sheets, I put a pad on top, changed her, all the while hoping she would go back to sleep. Not the case of course, and so for the next 40 minutes I walked Maggie around our house waiting for her to fall asleep.

At 7:45, Maggie again awoke to her bowels and her diaper again did not help us out and so the pad was dirty, as was Maggie. I changed her again, noticing that she was still tired (which I was happy about since I had not fallen back to sleep until after 6:00). So, I again walked her for 15 minutes and she went back to sleep.

Finally at 9:00, poor Maggie again awoke to her bowels and again, I took to cleaning her up. This however was not the end as not more than 15 minutes after that she went again, but this time it went all up her shirt and onto the rug. She and the rug ended up with a morning bath to finish things off.

Now, why am I sharing these poopy details? It's to tell you that our life is a 2-person job. It is rather difficult to handle poopy situations as the lone man (or woman). For this reason, I miss Andy already and know that this will be a long year. But, at the end of the year we will have two success stories-- a healed Maggie and a Dr. Andrew Bixler.

Turning tides a little bit-- Maggie again had her physical therapy this morning and things haven't changed much. She still cries continuously through the entire 30 minute session. I have skipped out on the last 2 sessions because it absolutely agonizes me to hear her crying like that and looking you in the eye like "rescue me." Her PT did say though that there are many kids who cry and actually refuse to do the work, but Maggie doesn't. She might cry, but she is still doing what is asked of her.

One little step in the right direction occurred today as Maggie stood on her own with no support for 30 seconds. She had done it for 5 seconds before, but this was a new record. I was so proud of my little girl as she stood there. She also used a walker and walked back and forth across the room. Our goal was to get her walking by her second birthday, but it doesn't look like we will. Our major issues are motivation or interest and confidence. The motivation is the key as she is content to sit and watch tv or be carried all day. She will talk about other children running or walking (her favorite right now and has been for over 2 weeks is "Ian walk."), but for some reason she doesn't care to do so.

It was good to see her progress though today as we feel in the last 2 weeks she has regressed. I think I just need to become a little more stern and have PT sessions in our house everyday. That will be rough for the both of us.

One more thing that Maggie is doing very well at is EATING. It is so weird to see her want to eat, but so wonderful as well. She has been a big fan of soup, so during her nap (all of 30 minutes) today, I made her a batch of potato cheese soup. She has been eating it constantly ever since. Hopefully this (and other items) will pack on the pounds, but more importantly, that her body will be able to absorb the nutrients and not lose it all in her stool.

Please continue to pray for Maggie as she fights this horrible disease and its side effects. And also pray for us all as we go through many new changes and transitions this upcoming year.

Our Reality

We have had a stressful time here--off and on for a couple of weeks. For most of you, you may find the topic tonight to be a bit repetitive and overdone. But we worry about relapse. Sometimes it feels like we shouldn't worry about it, for whatever reason. Either it just isn't practical to worry (it ruins our day, that's for sure) or it demonstrates a lack of faith. There are any number of other reasons to just relax. But we worry.

I think it is just the nature of the disease (and of parenting for that matter). I think of how much parents worry when their kids go to school for the first time, or when they get their driver's licenses. Or any time they leave the house. Parents worry. Imagine if your child had a chronic illness that has a 50% survival rate and can appear at any time...over the course of 2 years of treatment and 2-3 years following treatment. Only then do they consider it "cured."

This is how it often goes: the diagnosis of leukemia is made, and initial treatments often bring a quick remission. Then....you wait....and hope it doesn't come back. Statistics and exposure to other children with leukemia (via internet or in our hospital) show the harsh realities of the disease. The success stories are a little harder to find, unfortunately. Not that they aren't out there, but we don't tend to read about them as much. Maybe that's part of our problem. The uncertainty and waiting are what make this so hard. I can't imagine a tougher disease to cope with.

It would be nice if we could take a test following treatment that would tell us definitively if the disease is gone or not. Unfortunately, the tests aren't powerful enough to find all of the tiny leukemia cells that hide in the body. So we end up having to go about our day, sometimes wondering what today or tomorrow might bring. Relapse can be sudden, or gradual. It could show up in the same way that Maggie's leukemia first appeared 14 months ago (red spots on her scalp that wouldn't heal, and then spread). Or, it could be lots of fatigue, or unexplained low grade fevers, or bone pains, or funny numbers on blood counts. There are long lists of signs of relapse. The one that worries us sometimes is irritability or a change in behaviors.

The last few weeks, Maggie has been a real handful. She screams, she is needy, she has lots of demands that are difficult to satisfy. She needs to be at her mom's side--always. She is an emotional nutcase.

We hope it is a sign of the "terrible twos" making an appearance. Or, maybe her teething is contributing. Maybe she is just spoiled by all of our attention. But we don't have the luxury of knowing confidently that these are the cause. Any new behaviors bring panic. And we don't have the parenting experience to recognize normal developmental advances. From our perspective, it feels terrible. Our support resources suggest that our worries are normal and that other parents have the same concerns. It just goes with the territory. We are also seeing the doctor less often, getting blood counts less frequently. This alone makes us less secure. We hear that finishing treatment is sometimes the hardest stage for parents to deal with because in the next few years when relapse is still possible, you don't get the reassurance of doctor visits or bloodwork very often. Every little symptom brings panic. That's what we hear, anyways.

We worry about relapse a lot and there's not much hope for us to get over it for a long time. As much as it seems irrational for "outsiders," it is and will be our reality. As much as I hope that we will think about it less and less, we always seem to come back to this place. I don't know if other parents in our position find a real and lasting peace about it or not. But we haven't found it. And it isn't for a lack of searching.

We hope Maggie cheers up soon. We hope that what we're going through is normal. We hope that we find a way to think about all of this a little less. We hope that we can look back at this period in our lives as we prepare Maggie for her first date, or the time when she leaves to go to college, or gets married. We want to celebrate those milestones and look back with a sense of accomplishment, relief, and joy. At this point they seem so far away and so uncertain.

That's how we feel.

Diarrhea again...

Maggie had another VERY bad bout of diarrhea tonight. Andy wanted to take her to the ER immediately assuming that her potassium had dropped, but I asked that we wait until tomorrow to see what happens. Despite her diarrhea, Maggie acted happy and enjoyed her bath tonight (with her mom). We are hoping that this is her body's response to the Methotrexate she took orally on Wednesday, and that it will quickly go away. We really just can't get a break-- we are quite tired of it all.

Though Maggie is not nearly as grouchy and fussy as she was last week, she is not herself. I have to basically be holding her all the time, unless she is in her high chair. We are hoping that her mood will soon turn around and she will feel good again. Maggie is refusing to practice walking or even moving around. I don't know if it is laziness or if it is related to the way she is feeling. Whatever it is, her walking has not moved forward in the past 2 1/2 weeks.

I grew quite panicked yesterday as I have been thinking about the blood counts Maggie received last Thursday. All of her counts looked good except her platelets. They had dropped from 195,000 to 100,000. This dropped has scared me quite about and made me wonder if it has any relation to relapse. I was on the phone with 2 nurses yesterday for almost an hour discussing this worry. Not much came about, other than to say that Dr. French is not worried, so I will try to remain calm. I just don't like to see changes in Maggie's blood counts.

Though we are not trying to potty train Maggie at all, but rather just experimenting and taking her lead, Maggie did have her first poopy potty experience yesterday. She did a great job and received a sticker (I don't know if she cared much about the reward, but I thought it might encourage more experiences). Maggie is a cluster pooper though, so she did end up going more in her diaper, but hey, it's a start and we are just having fun with it.

Please pray that Maggie's diarrhea will go away immediately, that her potassium and hydration will stay up, and that she will feel better soon.

Better Days

We finally saw our "old" Maggie yesterday. She was much happier, smiling, laughing & talking. We didn't hear the word "no" nearly as much and she didn't throw as many tantrums or break down at the littlest thing. Maggie's stool was not as frequent or as liquidy as well. Saturday evening we had a pretty bad episode, so she was given Imodium. Hopefully all of the steroids/intrathecal chemo has run its course in her body and she can begin seeing better days all the time.

Just a little story... Maggie will tell us when she has pooed or when she is going to go. So yesterday she was sitting on the couch and said "poo." Andy asked her if she wanted to sit on the potty (we bought her a little one last week), and she pointed it out. So, we took her diaper off and pulled her paints down. She had already urinated in her diaper, so I assumed she was finished, but I figured since she was willing, we'd just go along with it.

As I took off her diaper, she insisted her pants be taken off all the way, including her socks. She's a little funny like that. Sometimes when we come in from being outside and take off Maggie's coat, she also wants all of her clothes taken off. Not sure why... So she sat on the potty and I also modeled it for her (scaffolding is very important, you know). When she stood up, there were 2 drops in the potty. So, I guess we can consider this her first potty experience and it was a success!

Needless to say, this is not our goal at the current time. We will respond to Maggie's cues, but we are much more interested in walking. Hopefully she will soon become interested in this as well.

Lab Results

We have been out of town since yesterday morning and thus the reason for not posting. I had some work engagements that I needed to attend in Columbus yesterday and today, and then we are with my family until tomorrow, but I wanted to post to share Maggie's lab results from yesterday.

We took Maggie to the lab bright and early yesterday morning because the doctor wanted to see what Maggie's potassium looked like after having the infusion on Tuesday. I was rather impressed with the lab technician as she only poked Maggie once and only used the tourniquet on her one arm. It was quick, (not painless) and they got the blood needed to run several of the tests.

We were quite nervous again about the results of her blood tests, and after about an hour, we immediately called the clinic to hear the results. Maggie's potassium went from 2.6 on Tuesday to 3.5 on Thursday. Though this is still low, it is much better than where we were. The rest of Maggie's counts were pretty good. Her white count and ANC were at the appropriate level for Maintenance. Maggie's platelets actually dropped about 95,000, which kind of surprised me (and honestly, worries me, but that is the nature of the disease-- any new incident warrants worrying). She is at 100,000 for her platelets, which is still in the normal range. It makes us wonder if the chemo she received last week via her spine and intravenously might have cut some of her counts in half (her white count and ANC also dropped in half).

Regardless, we will try not to worry about this and be hopeful that Maggie is on the way back to her "normal" poo that will not cause further electrolyte deficiencies. We have noticed that Maggie's poo is not nearly as frequent (she has about 4-6 a day) and it is not complete liquid, though it is still rather runny. We were told to limit the amount of Imodium that we give, and we have actually not given her any in 2 days.

Maggie's appetite has also increased. She is eating much more (though butter is still a staple). I think that the antacid (we are using a new one, Zantac, versus Prevacid because of insurance coverage), is helping her to feel more comfortable and perhaps comfortable enough to eat. We hope this continues as she really needs to add some pounds to her body to give her strength to become more mobile.

So, that is the update. We are hopeful that Maggie will again be able to manage her weight, nutrition, and hydration on her own, that her diarrhea issues will subside, and perhaps we will again be able to see smiles out of Maggie more frequently. She really does have a beautiful smile and I wish more people would be able to see it. Please continue to pray for Maggie and for all the children dealing with this dreadful disease.

Update

Maggie was in the clinic today for close to 6 hours. The main finding was that her potassium was very low; a result of her diarrhea over the weekend. She also had a couple of abdominal x-rays (which verified the intestines are wrestling with diarrhea). Maggie's belly is still bloated from being full of air. When she has such severe diarrhea it is hard for her to pass gas because the liquid stool doesn't move the air through the intestines. We still hope to have this subside in the coming days but it is a bit frightening because we've waited months at a time without luck in the past.

For her potassium deficiency they had to give her a slow infusion of IV fluids that have extra potassium additives. We are changing her medicine regiment a little bit trying to find a good combination that will minimize her diarrhea. Otherwise, no new interventions are being added at this time, so that is good.

The weight that Maggie lost in the last week was due to the fluids she's lost in the last couple of days. By the time we left the clinic, she was back up to her weight from last Monday. Hopefully she keeps the weight on and gets rid of the diarrhea soon.

We also seem to be dealing with some teething (we think) and it has Maggie acting very angrily.

Whitney surprised me with something pretty neat tonight. It requires a short story for background, though. Three days before Maggie was born, we found out via ultrasound that she would be a BIG baby. This frightened Whitney a lot (understandably) and necessitated a planned c-section. I found a houseplant at the store that had unusually large leaves but was quite beautiful none-the-less. So I purchased it as a gift for Whitney; it is our "Maggie plant." In the past few months, coinciding with our most intense fears that Maggie's cancer had come back, the plant started to look unhealthy, weak, and big chunks of the plant had to be pulled and thrown away (not a big surprise given our propensity for killing houseplants). As we worried about Maggie, our glances at our "Maggie plant" gave us a visual reminder of frailty and impending death. All that was left of the plant in the past few weeks was a single chute with 3 big leaves (probably about 1/4 of the original plant) and I had given up on it. I don't know when I watered it last. I was tempted to throw it away to get rid of any lingering superstition, as if to prove that Maggie would still be alive despite the plant being gone. Anyways...

Tonight Whitney pointed out that there are two tiny, baby sprouts growing from the soil. A sign of the resiliency of our "Maggie plant," a plant just at the very beginning of its life cycle.

Just like Maggie.

I know, it's a little bit sappy and silly, but it's a nice sign of hope for us.

Discouraged

We don't have a great update for you today. The last 3 days have been fairly bad with diarrhea. Just when we have half a day without any dirty diapers and get hopeful that we're improving, she explodes. Tonight it was in a store with friends. Whitney was holding Maggie when it happened and ran to the bathroom, but when she was about 15 feet away, Maggie's diaper failed and a huge pile splattered on Whitney and on the floor. It was very runny and messy. And we seem to be back to having a huge quantity for some of her poops.

Maggie was tired tonight and asked to go "nigh, nigh" which is rare for her. We weighed her (the best that we can from home) and we're pretty sure she's lost 2 pounds in the last week. That would be 3 1/2 down from her peak on TPN. She is looking skinny again, too. Just as in the past, we need to break the cycle that causes our problems. The diarrhea leads to weight loss, lowered nourishment, which seems to make the diarrhea get worse. Can we break the cycle on our own with our tools at home (BRAT foods, immodium, etc.)? We're going to call the clinic in the morning to see if that is worth a shot or if they recommend intervening again with a feeding tube or TPN.

Typically they wouldn't go to TPN unless the feeding tube and other efforts have been tried--but the feeding tube seemed to exacerbate the diarrhea problem to an extent in the past. We'll see. The TPN was a miracle worker before, but it is usually more of a last resort kind of intervention. And it would require continuous access of her port (again).

Will we have to cut off her food again? Will they start TPN or a feeding tube? Will they let us try a few more days on our own? We'll find out tomorrow.

I'm convinced that Maggie's acting a little irritated (from a tough week of chemo, steroids, then having her body beat down by the diarrhea). She's short tempered and doesn't have the joy that we want to see from her.

We're bummed down here. Concerned, frustrated, worried, feeling sorry for ourselves. Life obviously is not fair.

We'll update if anything happens tomorrow.