Worn Out

We survived the Upper GI with a small bowel follow through today. We were up extra early today after having several interruptions during the night for poop clean up. This left us all a bit more tired and Maggie especially tired given the amount of crying she did today.

As far as the procedure is concerned, it was quite difficult on the both of us. It is very hard to not be able to soothe my crying child. And just to clarify, this isn't a mad crying, but a scared crying. Maggie knows the x-ray room all too well, unfortunately, and as soon as we entered the room she started crying. When told she would be drinking chocolate milk (they put nesquik in the barium) she was very excited, but then they made her drink it lying down with a huge machine over top of her. This didn't end up working, for obvious reasons, and she was forced to drink it with a syringe.

The procedure then had us waiting for 30 minutes to an hour at a time before they did the next x-ray. During this time I had to force her to drink the rest of the concoction with a syringe AND get her finger pricked for a lab draw to see what her electrolytes looked like. If someone had a bad day today, it was definitely Maggie. She had over 4 x-rays and we waited 3 hours and 25 minutes before the barium finally finished through the small bowel. They say normally it takes about 1-3 hours. We assumed Maggie would be fast considering how quickly food passes through her body, but nope, like I've said before, nothing is easy with us.

Maggie did very well considering, however, the rest of the day she was much more irritable and jumpy. I have noticed she trusts things much less than before (if you can believe that), she whimpered some in her sleep during her nap, and of course she is just as needy. I am pretty upset by the whole thing; forcing my child to drink something disgusting, forcing her to lay down on her belly while holding her down, forcing her to take medicine that tastes bad, forcing, forcing, forcing. I shouldn't have to do this and she shouldn't have to be going through this. Must I say again, it's not fair.

Our next GI adventure starts tomorrow during her scheduled appointment in Cincinnati. We will see what the plan is-- and there better be a plan. Maggie's diarrhea has gotten increasingly worse. Friday night I was up 8 times changing her diaper, Saturday 6 times, and last night 3 times. I guess you can say it's getting better, but last night's required a whole bedding change. These nightly changes are on top of going 4-8 times during the day. Something has made things worse for her and I'm not exactly sure what. We decided Saturday that maybe we would put it upon ourselves to try a gluten-free diet and see if that creates any change. I've been told it might take some time, which I guess is good since there has been no change.

But I guess on the bright side, Maggie's labs were not horrible today, surprisingly so. They did increase her new medicine a teaspoon because her bi-carb is still low at 18.6 (normal is 20 and above). This medicine however is very bad tasting and Maggie cannot get it down her without almost heaving. There's a lot of it too, 6 teaspoons 3 times a day. That is a lot for a little girl, on top of taking so many other types of medicine throughout the day. Maggie's potassium was 4.1, which was quite a shock given our weekend potty experiences. So, with the labs comes another finger prick on Thursday or Friday to see how she is doing. Another moment for me to force her to sit and endure pain.

On the bright side, we did get to go Trick-or-Treating on Saturday with Maggie's friend Jay. She was very quiet and shy, but she did manage to say "Tri" (for Trick-or-Treat) and "Tan" (for thank you) when we walked up to the houses. I ended up carrying her the whole time, which was quite a workout. My goal next year is to have Maggie walking on her own and to have her dressed in a new costume (which means that she will have gained weight and grown). She was once again a bumblebee, which she liked, but was not all too fond of the hat with antennae.

I will say that I have grown tired of people commenting on how tired she looks. Even after a nap she looks tired. That's what chemotherapy and steroids do to you, they make you look tired. I often feel when people say that, that they are judging me for having Maggie out when she should be at home in bed taking a nap. I just smile and say, "yep," but what I really want to say is, "She has cancer. There's a reason why she's tired." I look forward to the day that she feels good. I also look forward to the day that I don't have to correct people by telling them she's a girl (I guess girls can't have short hair). I know, I shouldn't worry about it, but after awhile, it just gets to me. That's kind of what this disease is doing to me...getting to me.

Disappointment

We had a disappointing day--well actually more like a disappointing couple of weeks. It seems like we can't get ahead, ever. I took Maggie into the hospital today to get her counts checked because she has been having such huge quantities of diarrhea. After getting her finger poked, we waited 45 minutes in the waiting room for the results. The results showed a potassium of 3.6 (fairly good) and a carbon dioxide level of 15.6 (not so good). All of her other hydration numbers looked good but that one. Thus, Maggie had to be accessed and given a bolus of fluids to help bring up the bi-carb number. She was then given another supplement to take orally to try to help maintain her bi-carb.

Some other pieces came out of this visit. I called Cincinnati once again and requested that we be taken off of the enzymes. They don't seem to be helping and if anything they have made her diarrhea worse. Dr. Mezoff then changed Maggie's appointment to an earlier time next week. I'm hoping this indicates his (and our) sense of urgency for the situation.

We are tired of this. All week Maggie has gone to bed only to wake up less than an hour later to diarrhea. The diarrhea than lasts for the next 3+ hours making our nights end around 1:00 am or later. We don't have a moment to ourselves. We are cleaning up poo half the night and all day. It is just getting so very tiring and old. I had great plans to go my parents next week and visit with friends and all of this has been cancelled. Maintenance is supposed to be easier, but it is just as hard, if not harder.

We need an answer, we need a treatment and we need it fast. We cannot continue living like this and watch our child suffer. Please, pray for Maggie.

Upper GI Appt. Set

This morning I called and scheduled Maggie's upper GI with a small and large bowel study. Hopefully this will give some more information for Dr. Mezoff to determine where to go next. The appointment is scheduled for Monday at 8:15 in the morning. Pray that the procedure goes well. Maggie must drink barium and then the procedure will take an hour and a half or more. I don't know how it will work for them to observe her that long, but hopefully she'll do well.

I checked Maggie's weight today and she is down to 21 lbs. 4.5 oz. I think this shows the amount of diarrhea she continues to have. She had 4 episodes today (though the day is not done). It just doesn't seem to be letting up and I have no idea what is causing it's increase or consistency. She hasn't had milk in 2 days, so that can't be it. It is SO frustrating for us.

Please continue to pray for Maggie and her GI issues as well as for complete healing from cancer.

Upper GI

Unfortunately, not much has changed for Maggie and the diarrhea. Her diarrhea has picked up in the last few days or perhaps it never really changed much. Who knows anymore. I had been given the okay to give Maggie milk again and so I did the last couple days. I am wondering if maybe the milk might be increasing the frequency and changing the consistency even though she doesn't have a lactose intolerance. Again, who knows, but we'll withhold what she likes to give her any small amount of change for the better.

Can you tell we're a bit down about all of this? I cannot say enough how hard this has been on Maggie and her body. It's so sad to see her skin drooping on her. It's just not fair at all that she must deal with GI issues on top of cancer. I have learned that life isn't fair, but it doesn't mean that I still don't live by that principle. We need some answers and we especially need a treatment plan THAT WORKS.

With that being said, the nurse from Cinti. Children's contacted me today and said they are going to go ahead and schedule an upper GI with a small bowel study for Maggie. This is what comes next on the list that Dr. Mezoff has created and the last item on the list is another scope. She said they may just have to do another. What a new scope is going to show that the old one didn't I don't know. I'm going to try to schedule this procedure before her next appointment, November 6. I'm not sure they expect to see anything, but again, I guess it'll just rule out one more thing.

Please pray for our little girl. Pray that these GI issues are resolved immediately-- that they find an answer, but more importantly, that they find a successful treatment. And of course, continue to pray for Maggie and for the main reason we started this blog-- that her cancer will go away and never return.

Do the enzymes work?

Unfortunately, I don't think they are going to work for us. Maggie has continued to have diarrhea, with it increasing around bedtime (the reason for Maggie going to bed so late recently). Many of the nurses that I've talked with say that they should work immediately, so if that is the case, they are not our "answer." I asked the GI nurse I am in frequent contact with at Cincinnati Children's about our next steps. It might appear that our next steps are a procedure that involves drinking Barium.

Hopeless is the word that I am feeling. I really thought the enzymes might be our answer, but I guess that was too easy of a solution. Easy is not a word used around this household.

I took Maggie into the clinic today to get her labs drawn again. She received lower numbers on her hydration yesterday so they wanted to keep her accessed while giving her a night off of fluids. We were thinking (and maybe hoping) that the fluids were increasing her diarrhea. Maggie's counts today showed that her hydration (or bi-carb) had risen, however her potassium dropped again (from 3.5 yesterday to 3.1 today). Regardless of this decrease, Dr. French gave the okay for Maggie to be de-accessed. We hope that she will maintain her hydration and we don't need to go back to the hospital on Monday. Another little positive piece is that Maggie's weight has increased back up to its original number- 22 lbs. So it appears she has gained back all the weight she had lost from diarrhea. I don't know if the weight loss was from loss of liquids, but I hope that maybe the weight gain shows that her nutrition is coming around. We'll take weight gain no matter what causes it.

I know that our prayer request becomes quite repetitive, but please pray for Maggie's diarrhea to stop, her body to absorb nutrients and of course the most important, that Maggie's cancer is completely gone forever.

Update

Yesterday was a pretty rough day for us--Andy at work and me and Maggie at home. Maggie continues to have diarrhea, mainly at night when we have tried to put her down. I am getting a little worried that these enzymes just might not work. Maggie wanted to go to sleep last night around 8:30, but before it was all said and done she was asleep with the help of Benedryl at 12:30. It was a long night balancing between her request for hot dogs and green beans and going poo in the potty. Once I did get her down, I was up every hour until 5:00 am changing a dirty diaper. It was very tiring and frustrating that things are not slowing down.

Maggie had her labs drawn yesterday and today, both showing her potassium at 3.4 (it was 2.4 when we left the clinic Monday). In talking to the nurse, as long as her diarrhea slows, tonight will be her last night of fluids. I was hoping that the numbers would be a bit higher, considering she's on fluids, but I guess her body is slow to responding and she is still losing a lot of potassium in her diarrhea.

I noticed yesterday that the steroids still seemed to be affecting Maggie. She was very touchy in that if something didn't go her way, she would immediately start screaming. An example of this was when we decided to go out. It was a beautiful day, mid 60's and so I decided we would go to the Greene, our favorite hang out on nice days. I dressed her like it was winter; winter coat, winter hat and gloves just in case (I had forgotten what the 60's felt like after being so cold lately). When we stepped outside and felt the warmth I took Maggie's hat off and she was very mad. So, she ended up dressed for winter and probably sweating, but she was happy. I guess that's all that matters. So, the day was quite challenging and from the moment I woke up to the time I went to bed I spent 5 minutes by myself, all the while hearing Maggie calling my name. It was a long day and one that didn't get any relief, even once everyone was asleep.

Maggie is doing better today as she has had less tantrums. I just finally got her to take a nap by herself, something that hasn't been done since the Sunday before last. I am hoping the steroids will rid her system soon as I think they have also caused all of this diarrhea, behavior changes, and sleep changes. It will be nice when Andy and I can sit down together again for a few moments to just relax while our baby is sleeping. You need some downtime every now again, right?

Please pray that these enzymes will be effective and that they will stop Maggie's diarrhea and that she will start to put on some weight. I weighed her today at the clinic and she was up to 21 lbs. 7 oz. with a bit of a wet diaper, so there is improvement, but most likely from fluids. We all just want some relief soon.

Rehydration

We went to the clinic today, as we've done the last 3 months after steroid week, to get Maggie rehydrated with fluids. Maggie's numbers showed that she was dehydrated and that she had potassium loss once again. The horrible part to all of this is that we found that she has lost a pound and a half since last Monday as she is down to 20 lbs. 5 oz. She is almost to her lowest weight before they decided that we needed to change things and began TPN.

As I drove Maggie to the clinic today, I called Cincinnati Children's GI nurse who've I've been in contact with many times over the last week. I told her we needed to become more aggressive as the Imodium is not doing the trick. After lots of back and forth conversations today, Dr. Mezoff decided to try the pancreatic enzymes. I also found that one of her lab results on her stool sample showed that she was in the moderately low level of absorption of Elastase. So, with this in mind, they hope that perhaps the enzymes will help her body absorb better and for me, I feel like this is the last viable option. If the enzymes don't work, I don't know what will. Please pray that the enzymes will be the solution to this 9-month problem.

We had Dr. Dole today, another oncologist at Dayton Children's, versus our primary doctor, Dr. French. I won't share my feelings about Dr. Dole, but to say that he goes about treating patients and discussing with parents much differently than Dr. French. With that, Dr. Dole did things a bit differently in that after they gave Maggie a 2 hour bolus of potassium, they rechecked her levels (something they haven't done the last 2 times). After rechecking her levels they found that they dropped rather than raised. Maggie came in with a potassium level of 2.7 (normal 3.7 and above) and after receiving fluids had a level of 2.2. They rechecked it and it came back at 2.4. Dr. Dole came in and told me that they were going to keep Maggie overnight because her levels were critically low. To Andy's later chagrin, I talked Dr. Dole out of keeping her overnight, even though he was uncomfortable doing so. We were being sent home on IV fluids overnight for 3 days, and I have witnessed Maggie do this 3 times now, always to see her levels rise the next day. Along with that, Maggie has been in a very good mood, talking away and not even being a bit crabby with no nap today. So hopefully things will continue the way they have in the past and Maggie's levels will rise by tomorrow.

The plan is that Maggie will be accessed until at least Thursday, receiving IV fluids overnight for 12 hours. Home care will come out daily to draw labs to see what her levels look like. As long as things go well, she'll be off fluids then. This is a new protocol for us, as in the past we have gone home de-accessed and Maggie has done fine. But I think they are doing this per request of Dr. Mezoff (he had wanted Maggie on fluids throughout all of her steroid week, which Dr. French wanted to wait and see if Maggie would hold her own). The other main change will be those pancreatic enzymes. I am told that they work pretty quickly and we should see a change within 3-4 days to a week. Again, please pray that they work because if not, I don't know what will happen next and Maggie cannot continue this way. The poor girl is skin and bones with a protruding belly. It's just not fair to her at all.

Please pray for Maggie in these coming days as she rehydrates and the enzymes take effect. Let this be the healing answer to our countless prayers.