Latest results

We found out this week that Maggie's intestinal enzyme levels are normal--so no lactose intolerance or anything else similar.  This was the last bit of information that we were to get from the scopes and biopsies from last week.  Which leaves us quite confused...nothing at all seems to be abnormal.  Diarrhea for 3 months plus, but no obvious source of the problem.

We assume at this point that it is probably just treatment related (from chemo) and that we'll have to wait and hope that it gets better.  Also, her diarrhea picked up again when she was on her limited diet and is now facing another 2 weeks without food by mouth to get things back settled down.  She remains on the formula that is easy to digest, but she's had diarrhea off and on the last 24 hours or so.  We may be looking at a long process of waiting and hoping for improvements.  What is apparent is that Maggie can't tolerate food right now.  The doctors are trying to boost her nourishment over these next two weeks before we try the next thing.  Her stomach is still full of air and looks uncomfortable.

We also continue to hope and pray that Maggie is on track.  Anxiety sneaks up on us sometimes, and that isn't fun.  But we're going to take things a day at a time and hope to see improvements and keep the leukemia from returning.  That is our prayer throughout each day and night.

Continued thanks to everyone who is supporting us in many different ways.  We appreciate it.

ER Visit

We visited the ER this morning after some concern for Maggie and her diarrhea.  Maggie's diarrhea has again picked up since yesterday.  Yesterday morning Maggie had a "normal" stool and we began to think that maybe we were giving her too much applesauce and bananas because she was pushing.  However, it went downhill after that and she continued to have diarrhea in her stool throughout the day and night.  We changed 4 dirty/wet diapers during the night and at 6:00 am, Maggie woke up and immediately said "wawa" (water).  We gave her a glass and she gulped it down.  This happened last time she got very dehydrated (as well as Andy noticing the skin on Maggie's bottom is hanging like a "deflated balloon") and so we were nervous with all that we've been through, that perhaps it was happening again.  

Andy called the hospital at 6:30 am and an hour and a half later, the oncologist on-call called us back.  They normally return our call in 5 minutes.  Thankfully Maggie didn't have a fever or this would have been a problem because in those instances we must get her to the hospital so that she can get antibiotics right away.  

Due to our experience in the past, we were told to come right to the ER.  Being that Maggie had surgery on Wednesday to replace her broviac with a port, we had a new experience of putting numbing cream on the site where her port is, so that they could access her.  Andy and I were both nervous about how Maggie would handle the nurse poking her with a needle, but she really did well.  She cried as we held her down and as they poked her, but the cry didn't escalate, which means that it didn't really hurt Maggie (which is what I was afraid of), and once she began the process of drawing blood, Maggie was very calm and still (she slept most of the time that we were in the ER).  

After blood work, it was determined that Maggie's hydration levels are still good.  We were expecting the worst (we had packed our overnight bags expecting several days in the hospital once again), but were pleasantly surprised.  We will be having home care come out tomorrow morning to do another electrolyte count to make sure that Maggie hasn't fallen lower in her numbers, especially since Maggie continues to have numerous dirty diapers.  

We are very happy to be home, however, due to our visit to the ER and Maggie's condition, we had to cancel holiday plans today, which we were extremely disappointed about.  Andy and I (as I've shared in the past) are just so tired of this.  I've lost faith in the process of healing Maggie's diarrhea problem, we are tired of always worrying, and we simply long for something good to happen.  We have been hit down so much that we just don't know how much further we can fall.  

Please, please pray that this diarrhea issue will get fixed entirely, and though I don't ask for prayer for us, I do ask that you would pray for our psyche.  We are simply tired of it all.

Results, part I

Maggie saw Dr. Kahn, her gastroenterologist today and got most of her test results from her procedures last week.  Dr. Kahn was very happy with what she found so far:  the biopsies have come back negative (ruling out bacterial infections, viral infections, parasites, celiac disease, and probably a lot of things that we don't want to know that they were testing for).  They don't yet have her enzyme level results yet, so we'll find those out next week.  Thus, they don't know if she's able to digest lactose, fructose, sucrose, etc.  At this point, Dr. Kahn is suspecting that this is what will come back with a more significant finding.  And she's happy about that.  

Given that Maggie's diet during the diarrhea consisted of breastmilk, whole milk, ice cream, whipped cream, ranch dressing, and little else....unsuspected lactose intolerance would be quite problematic for her.  If this is what the problem is, Dr. Kahn expects that it would be temporary.  The enzymes could be out of balance due to a bug that she might have had in Jan./Feb. when this all started, plus chemo and other medication related causes.  Maggie had a stretch this morning when her stools were pretty liquidy again, so we were a bit worried about the new diet allowances....but we seem to be doing better this evening.  Plus, Dr. Kahn liked the looks of one of Maggie's dirty diapers.  

Sigh.

Nowhere close to out of the woods, but no bad news is good news.

We remarked in the appointment that our obsession with GI issues gave us a bit of a distraction from relapse/cancer worries (though it wasn't much of a relief).  I hope we continue to have good reason to trust that her Leukemia is gone forever.  It's hard to explain the anxiety that comes with all of this.  Though we often hear sentiments suggesting that optimism is the right approach, it is so hard.

Anyways, Maggie is asleep, is 40% through her doses of steroids for this week, and we are exhausted.  We have been very, very fortunate to have lots of help this week (and other weeks) from our family and are continuing to receive generous and kind letters and gifts.  Thanks to all.

I can't stress enough that we still need your prayers for Maggie, for things to settle down, and most importantly for the leukemia to never come back.  

Thanks.

Success

Maggie had a successful procedure today, her broviac was taken out and a port was inserted.  She also had a spinal with chemo and low dose chemo via IV.  Her procedure lasted somewhere between an hour and an hour and a half.  

We are home and Maggie is finally sleeping.  Also--today we were given permission to start giving her some food, though there are restrictions.  And tomorrow we see Dr. Kahn for biopsy results from her scopes last week.  

Our big week is part way done, but the results will be a big step for us, and we have started a round of steroids tonight, too.

Please continue to pray for Maggie and her health.

Enough Already

I know that Andy just posted last night about what's going on in our household, but I feel the need to reflect on the last several days.  I know that folks try to encourage us through words about how things are going, how we should be thankful, what a good job we are doing as parents, etc., (and we do appreciate encouragements), but sometimes I don't think one really understands exactly what we are dealing with.

 

Have you ever been told that you can't eat?  Let alone, tell practically a baby that she is not allowed to eat?  No, you probably haven't.  Well, let me tell you that it is absolutely horrible to do so.  Maggie asks us for food and milk through sign language and pointing and what do we do?  We tell her "no" or ignore her.  Not only are we not providing for her needs, but we are ignoring her communicating to us.  A little one like her does not understand this nor should she have to.  It is complete cruelty in my opinion.  

It is obvious that Maggie is hungry as I can hear her belly rumbling.  We have had issues with her interest in eating since she was diagnosed and now, for once, she wants to eat and we tell her no.  Seriously, what is this teaching her?  I am very upset with this new "trial" that we have been put through.  Don't you think (God) that we have dealt with enough?  Because of all the issues we have been having, I hardly have time to think about the main illness that we are dealing with.  Quite honestly, enough.  I am tired of putting my child through this.  She has been through more than you or I have or probably will ever go through and she is only 19 months!  I just don't understand.

I also sit here by myself as my family has gone to the park for a walk.  Why?  So that I can eat.  I never realized how food is such a social event.  In the last several days, Andy and I have taken turns to eat while the other distracts Maggie.  Eating is not nearly as fun nor the food is as good when you are eating all by yourself.  I am quite saddened by the whole thing.  I feel as though our family is not quite right as we are unable to share the joy of talking around the table, sharing food, and enjoying each other's company.  I knew that these 4 weeks would be tough, but we have only been home for 4 days and it really feels like torture on all of us.  I really can't imagine doing this for a whole month.  

I am very frustrated right now.  My heart continues to hurt for Maggie and what she is dealing with.  I just want her to live a "normal" life and to be healthy, but it feels like we continue to get bombarded by new obsticles.  I'm so tired of it.  

Continuing from home

(Sorry to leave you all in the dark)

Maggie was discharged on Thursday and has done fairly well since then.  We had a couple days with only 2 dirty diapers (quite a relief from 20).  The diet update is that Maggie is allowed only water and some sugar-free jello.  Well, since Maggie's been home, she's been quite hungry.  Hungry enough to eat a whole box of orange jello in about 24 hours.  We've had a little bit of diarrhea (bright citrus orange!) in the last 12 or so hours, so we're wondering if we overdid the jello.  We're going to cut back so we don't risk the progress that we've made so far.  We are 1 week into "project starvation" and we don't want it to go to waste.

A homecare nurse took some bloodwork this morning and apparently Maggie is well hydrated at this point (despite the orange stuff).  So that was nice.  

We were getting used to Maggie being easy to care for in the hospital--she cuddled with us and would fall asleep very easily.  That was the case through Thursday night or so, but she's become a bit more energetic since then, and now protests our new bedtime methods with lots of screaming.  Fortunately, once she is asleep, she has stayed asleep through the night.  We are hoping for continued improvement with her sleep.

Today especially we've been noticing that Maggie seems to be hungry.  We haven't eaten in front of her for a week, but it is just apparent that she wants some food.  She's pretty desperate for it, actually.  So we'll check to see if they can increase the flow rate on her feeds. 

This all still feels like a daunting task--Maggie is needy and fussy (and hungry) and it seems like the next few weeks will just drag.  Hopefully we're on our way to getting Maggie taken care of.  We should get biopsy results (from her endoscopy and colonoscopy) on Thursday when we see Dr. Kahn in her outpatient clinic.  Please pray that they find a cause for her diarrhea that is simple and easy to treat.  

Good news for the week:  As of now, Maggie is scheduled for surgery on Wednesday to remove her Broviac to trade up to a port, which requires less maintenance and will allow her to get as wet as she wants.  We have longed for that procedure for a long time!  She'll also get a spinal (maybe a bone marrow aspirate, too) and will get low dose chemo and start a week of steroids.  Lots of fun lies ahead.  As steroids often cause increased appetite, we are frightened about how the "starvation project" will go during that week.  As if this week wasn't challenging enough.  

Not to complain...we're happy to have no news on the cancer front (no news is good news) but we're ready for a break from the highly stressful stretch that we've been on.  

Slow day

Not much has happened today.  Maggie's counts and hydration are perfect, so now our only goal while inpatient is to slowly increase her feeding tube formula and to make sure it is being tolerated well.  Sometime Wednesday evening we will have her at her goal rate and we will be free to go home soon thereafter (Wednesday night or Thursday morning).  

Otherwise, the big news of the day is that Maggie will be without food by mouth for 3-4 weeks, not 2 as we were told previously.  Apparently it takes 2 weeks or so for the intestines to fully regenerate its lining in normal cases, but Maggie's diarrhea has gone on long enough that even more time will be needed.  This is the plan regardless of what they find out with the biopsy results.  This will also signal the likely end to Maggie's nursing--kind of abrupt and unforseen.  So that will be an emotional adjustment for Maggie and Whitney.  Lastly, it sounds likely that we can continue her chemo and steroids next week despite all of this drama.

Obviously, we're a bit bummed about the news.  It just seems like a long, long time to keep a child from swallowing anything but medicine and water.

Please continue to pray for Maggie's recovery and continued success with the cancer treatments.