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.

Diarrhea Returns

Please say a quick pray for Maggie. She has had diarrhea all evening-- we've changed more than 10 diapers today. We worry that her hydration, potassium, and weight are being drastically affected. Hopefully this is just an effect to the laxative we gave her (per doctor's orders) yesterday. Never again will I give her a laxative. Pray that it will go away immediately, that she can rehydrate herself and her weight will come back up. Thanks.

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.