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.

Maggie's back!

Maggie is back with us and acting normally--the procedure went fine.  We now know that her intestines are somewhat "blunted" as expected (the inside surface is smooth and fairly flat).  Otherwise, they didn't identify a cause.  The biopsies that they did will reveal the whole story in 5 to 7 days.

We are going to start the new formula through her feedingtube at a slow rate, and work our way up in volume.  Dr. Kahn is recommending nothing by mouth (except pedialite) for 2 weeks....

Scope

We are currently sitting in the surgery waiting room.  They took a screaming Maggie back a little bit ago to begin the procedure.  The doctor will scope down her throat and another rectally to look at the base of her colon.  They will take biopsies of her small intestine as well and send them off to Wisconsin.  We are told that it will take a week or more before any results are found.  

As for now, Maggie will not be allowed to take anything by mouth (breastmilk included) for a week or two.  While Maggie has done well thus far with not eating or drinking, I can't imagine two weeks worth of this.  The plan will be to add a formula that is completely broken down that will be easy for Maggie's body to digest and absorb.  This will be given to her through her feeding tube.  So, we have a long road ahead of us.

Please pray for Maggie:

1.  That she will get through the anesthia and "surgery" well and with no complications

2.  She will not have any side effects to the anesthia

3.  The next week or two will go well and Maggie will transition well with no food or milk by mouth

4.  The doctor will find what is causing the diarrhea, but more importantly how to treat it.

5.  The treatment will be fast and effective

6.  STRENGTH

My Hero

There's not really any new news to share.  The GI specialist did not meet with us today since nothing was really going to change.  Maggie is still not allowed to eat anything.  They have put her on TPN to give her the fat and nutrition that she really needs while NPO.  Most would say that Maggie has looked pretty sad and listless today.  She hasn't smiled or talked much.  There was a little bit of time this evening that she perked up and talked and played a little, which was encouraging.  Perhaps the TPN is helping that.  

Our next steps that we are aware of is scheduling a colonoscopy.  Please pray that this might be able to take place on Monday so that they can figure things out and allow Maggie to eat once again.  

Maggie found a friend today, a little boy with AML (leukemia) who just turned 2.  We met them earlier in the week and just today Maggie has been quite entranced by Nathaniel.  He will run up and down the halls or play with another little boy, Tim, and Maggie just watches him.  As he ran past our room this evening, Maggie waved at him.  It was all very cute.  I think he might have a connection with her as well by the fact that when she started crying this evening, Nathaniel came out of his room to check to see if she was okay.  This might just be the beginning of a long lasting friendship.

These last two days have been tough on us.  I will be honest in saying that it is going better than I thought it would.  When I found out the situation yesterday (I was at work) that Maggie would no longer be allowed to eat, I was very upset.  Nursing is not just a means of nutrition for Maggie, but more so it's a thing of comfort to her.  And I was no longer able to provide that to her.  It was heartbreaking to watch her sign the word milk to me and tell her that I couldn't give her any.  How do you tell a baby that they can't eat?  It's cruel.  I have broken down several times feeling helpless and unable to do anything for my baby.  

I will say one thing about this whole situation (other than it's a horrible cruelty to my child), it has shown me how strong my baby is.  She is my hero.  Maggie has shown us that she can adapt to anything.  She has been told that she cannot eat and instead of doing the thing she loves best, which is nursing, she has learned to find other ways for comfort.  Maggie will lay on our shoulders and go to sleep that way, rather than nursing, and as long as we hold her, she will sleep.  Though she has asked for milk several times, she has learned to compensate in other ways.  

My baby is the strongest person that I know and I am the proudest mom in the world.  I know that Mother's day is a time to celebrate all the moms, but today, I celebrate my child.  It is because of her that I am a mom, and it is because of her that I am able to persevere on through these seemingly impossible struggles.  And the reason for this is that strength and resilience she has shown us.  She is amazing and I love her more than anything.  I thank God for giving us this beautiful little girl to take care of and love for the rest of our lives.  

Hospital

Hi everyone.  We're back in the hospital again--even on 12 hours of IV fluids and overnight feedings through her tube, we couldn't keep Maggie's hydration levels up due to the severity of her diarrhea.  So, we're back.  

This time, the approach is a bit different; more aggressive.  Dr. French wants to do a colonoscopy ASAP to find out more about what's causing the diarrhea--the only trouble is that Maggie's blood counts have been too low and it would pose a major infection risk.  They are also stopping Maggie from eating anything (including breastmilk this time)--which will be one of the biggest challenges that we could imagine.  It is pretty heartbreaking, actually.  Anyways, the plan was to be pretty involved and would probably require no eating for several days until her blood counts would allow the colonoscopy (and Dr. French talked about doing it once her counts got even to a borderline recovered level--he was going to push as much as possible).  BUT, we received a very surprising bit of information this evening as Maggie's ANC (a measure of the neutrophils in her blood, the white blood cells that fight infection) has jumped from 100 on Thursday to 2100 today.  We didn't expect to have that kind of recovery until Wednesday or Thursday.  Dr. French doesn't even know yet, but it would seem to be safe to give her the procedure as soon as tomorrow.  Sooner is better, but it is also huge to avoid the infection risk of having the procedure when her ANC would be 200-300.  So we are a bit encouraged.  Hopefully this will allow them to get more information and start working on a solution very soon.

They did an x-ray of her stomach already and seem to have a lot in store for Maggie in the coming days, but it is all a part of aggressively seeking the cause and a treatment.  So this will be good.  A lot of the worry and risk seem to be minimized with her counts recovering.  Please, please pray for Maggie to sleep well (that would be a real miracle) and to manage the days without food.  We can't express enough thanks for your prayers.  There will likely be lots of updates in the coming days.

Thanks.

Clinic visit

Today we visited the Clinic and Dr. French for a count check, and to check on her hydration levels.  We were anxious about her hydration and actually had a bet about whether or not we'd be admitted for more hospital time.  As it turns out, the diarrhea continues to be bad enough that one of Maggie's hydration counts was halfway back to where it was when we were admitted on Sunday.  Also, her potassium level is quite low (potassium is affected by chemo, but more directly is lost from the body with diarrhea).  Upon hearing these levels, we still weren't sure if we'd be allowed to go home or not.  Ultimately, Dr. French decided to send Maggie home on IV fluids overnight and to check the levels again tomorrow.  We were grateful to get to go home and hope that her levels recover well with the fluids.  

The diarrhea issue is probably not going to get resolved super immediately, that's what we're told.  Dr. French thinks that her small intestine is probably smooth and inflamed and therefore, not able to slow the food down on its way through, nor is it able to absorb enough nutrients.  I think we had 10-15 dirty diapers during the 12 hours of Maggie's feeds last night.  All of the chronic diarrhea and chemo has likely led to this.  He doesn't believe at this point that there is an infection in her intestine, though that's still possible.  Stool culture results aren't in yet.  

We are changing the formula that she gets for her feeds to a type that is easier to absorb, and are continuing to add fiber to the formula.  Also, we're going to continue replenishing normal bacteria into her gut with lactobacillus (which is also found in yogurt...if only Maggie would just eat yogurt!).  These are part of our effort to let the intestines recover.  When the chemo lightens up in the coming months, that should help, too.  Otherwise, it just takes time and patience, I guess.  If the new antibiotic that the GI specialist put her on doesn't help, it seems likely that Maggie will get a colonoscopy in the coming weeks to pinpoint what is going on.  Then, they'll have a better idea of what the condition of her intestine is, and they can biopsy to identify any infections, bacteria, parasites, etc.  That seems to be a good solution, but they can't do that procedure until Maggie's counts are good.  Any probing into her rectum is a huge infection risk when her counts are down as the tissue there can tear and bacteria has a free ride into her bloodstream.  The good news seems to be that intestinal infections, if Maggie has one, are most dangerous by their connection to diarrhea and dehydration--they don't usually pose a risk of spreading throughout the body and causing bigger risks to leukemia patients.  So, we are working to manage and protect against dehydration and will be patient, waiting for some relief and resolution.  

As for Maggie's blood counts, she is close to zero; the chemo from last week has taken its effect.  They have a couple more days of dropping before they're likely to start recovering and Dr. French is anticipating having to infuse some platelets early next week.  We need to keep Maggie isolated and used a mask to take her out of the hospital after hearing how low she was.  

We have been discouraged at times during the last day or so as we recognized that our discharge on Tuesday did not represent major progress with the diarrhea issues or hydration concerns.  It is all a bit frustrating and nerve-wracking.  Also, Maggie has lost 2 of the 2.5 pounds that she had gained being on the feeding tube over the last month.  Her "bowel rest" in the hospital might have helped her digestive system (or maybe not?), but it cost us some weight.  Hopefully that will come back quickly.  We as a family are also going through some uncertainty about what our work/insurance situations will be in the upcoming months and there is a looming dissertation defense that is being prepped for.  Hopefully we will find our way through these challenging weeks.  We need prayer for patience, for Maggie's healing, protection from infection while her counts are low, progress with the diarrhea, and peace of mind for the other things happening in our lives.  We remain grateful for no negative reports on Maggie's cancer--this is the biggest thing.

Someday we'll look back at these weeks and months, and I can't imagine what our emotions will be.  As tough as it has been, we continue to creep closer and closer to our goal.

New Tube

We had quite the eventful day today.  Unfortunately Maggie got sick a couple of times this morning and I was unable to salvage her feeding tube.  When Maggie vomits, her feeding tube will start to come out due to the force and normally I am able to push it back in.  However this morning, her feeding tube came out of her throat and I was unable to put it back in.  With that, we had home care come and put feeding tube number three in.  It was again very traumatic for Maggie and Andy said that she knew immediately what was going to happen as she covered her nose.  Poor thing.  I fortunately have not witnessed one yet, however Andy has been less fortunate.  

Maggie has been a bit fussy this afternoon and it worries us that her dehydration might be sneaking back again.  This was one of the signs that she demonstrated on Sunday.  She continues to have dirty diapers and I am unable to determine whether the wetness is from urine or pure diarrhea.  It is a very scary thing and we are very tense about the possibility of dehydration.

Maggie goes into the clinic tomorrow afternoon to have her counts checked.  We will also most likely take a look at her electrolytes to determine her level of hydration.  Please pray that the diarrhea will go away and that Maggie will stay well hydrated.  

Back Home

We were discharged this evening after FINALLY meeting with the GI doctor.  Dr. Kahn finally came to our room around 4:30 this afternoon and met with us for 5 minutes.  I don't have complete understanding of her explanation to things, but I will try to explain what she thinks might be the cause of Maggie's diarrhea.  

Dr. Kahn believes that due to Maggie's immune system being continually wiped out, the natural bacteria in her small intestine could be growing and causing inflammation.  Typically, with a normal immune system (for people not receiving chemo), bacteria that sits in your digestive system is easily managed and causes no harm.  If this is in fact the cause of her problems, she prescribed a medicine that should help resolve it.  Maggie will be taking an antibiotic that only affects the intestines for 3 days.  We may see results in the first week or so, but it might not take full effect for several weeks.  If this doesn't work, they will explore other causes by doing a a couple of scopes.  Hopefully we will not need to go toward these more invasive route.  Either way, she's not surprised to see someone on chemotherapy to have chronic diarrhea.

So, that is what was resolved from these couple days of staying in the hospital.  Though Maggie is still having some diarrhea, it has slowed.  Her bottom is healing nicely thanks to disposable cloth wipes and her diaper cream, and she is back to her smiling self due to the rehydration of fluids and Potassium.  

We pray that this is the last time we will have a stay in the hospital.  We told our nurses that from now on we will only be visiting the floor to say "hi."  Though we love the "family" on the hemoc floor, we would much rather sleep in our own beds, eat our own food, and have the freedom to roam around IV pole-free.  

Thank you all for your continued prayers.  Please pray that this antibiotic will heal Maggie's diarrhea and also pray that during this time of very low counts, she will remain infection-free.  

Hospital Day 2

We are still in the hospital hydrating Maggie of the fluids that were lost through her diarrhea. Maggie is still experiencing some diarrhea, but it seems like it might not be nearly as often as it was yesterday. She was so exhausted from not sleeping Saturday night and from the dehydration that Maggie slept from 6:30 pm to 8:15 this morning. Not that she didn't get up several times throughout the night, but she went back to sleep.

We have heard many different things from residents to our primary oncology doctor to the resident GI. Some have discussed that Maggie should not be eating/drinking anything to allow her bowels to rest. Currently she is only on a breast milk diet due to the ease in digesting. Funny thing though, Maggie has been asking for milk in a cup all day. Who would have thought that this would ever be a request. They wanted to take her off of all food/drink, but I refused to allow them to stop the nursing or else none of us would be sleeping and she would be crying most of the day.

Some other differences we are hearing is the possibility of this extreme case of diarrhea. Though Maggie has had a type of diarrhea since February, this week it has become complete liquid. Some believe it is chemo related, others believe it might be from the antibiotics she is on. No one knows for sure what might be the cause, but for whatever reason, it has definitely gotten worse in the last 3 days or so.

Maggie's bi-carb level, which was at 9 yesterday (normal is 25-ish, and this number is what got her admitted) is now at 14. They said that 20 would be an ideal number, though still low, and would get us closer to being discharged. Maggie's potassium went from a 3.2 to 2.4 (a normal low is around 3.7). This is another number we are continually fighting with. Her potassium level depletes quickly whenever she has diarrhea. They are currently supplementing her with oral potassium chloride and giving her potassium in her fluids.

Overall, Maggie is doing much better than yesterday. She was very fussy yesterday, which was most likely due to her dehydration. She is in much better spirits and is willing to play again.

Some things that we are looking at in the future- the GI specialist will be meeting with us tomorrow to discuss options. The resident today discussed further stool cultures and a possible GI scope. We'll get more clarification tomorrow. Maggie also has a speech therapist, feeding therapy appointment tomorrow to help work with Maggie's eating. If we are still inpatient, they will still allow us to keep this appointment as Dr. French sees it very important for her to attend (as we do too, seeing as they will help Maggie learn how to eat).

In general we are waiting in the hospital for Maggie's hydration to be at a safe level and for her diarrhea to be under control, though most likely still occurring. Please pray for Maggie to be completely hydrated and for the doctors to determine the cause and how to treat her diarrhea. Thankfully, Maggie's bottom is beginning to heal, but this area is still in need of complete healing to eliminate any infection risk. By the middle to end of the week Maggie's counts will most likely hit zero, so we want to make sure that there are no infection risks, period. Please pray that Maggie will stay free of infection, that her bladder infection is clear (they did another catheter today to determine whether or not she still has the infection), and that her counts will recover quickly.

Thank you for your prayers.

Bump in the road...

Unexpectedly, we update tonight from our old comfy room in the hospital. Maggie is "moderately" dehydrated and we recognized enough of the symptoms to make a phone call late this afternoon and set in motion a trip to the ER, which led to an admission. Ultimately, Maggie's diarrhea continues to be a problem, and it has probably gotten worse the past couple of days (it is definitely having a more substantial effect on her hydration than her regular chronic diarrhea does). Obviously, we are a bit disappointed to be here, but we are pretty convinced by now that it was necessary. She may have an infection on top of her chronic GI problems. We'll find out.

Maggie was not feeling well and she showed quite a few effects of the dehydration. She should be on track now as she's on fluids and was monitored closely while they waited for a few of her vitals to recover. She's resting really well; she slept our whole visit in the ER and has continued ever since. We were happy to see one of our old "float" nurses in the ER tonight--she had treated Maggie up here on the oncology floor several times and we liked knowing that she already knew Maggie and her situation.

We are also fortunate that Dr. French, Maggie's attending oncologist, is on inpatient duty this upcoming week (the 3 doctors rotate). He saw her all last week, so her recent issues and all of her treatment history will be fresh in his mind. We have been told to expect a 2-3 day stay, but maybe it will be more. We'll see what Dr. French says. Her hydration will need to be all the way better and her diarrhea should be managed a bit for them to discharge us. In the meantime, everyone is trying to crack the "diarrhea case" and they seem to have made it a priority for our stay. We'll keep our fingers crossed for progress and clarity.

We visited this floor about a week and a half ago--happy then to be in the position of "visitor," or even "graduate" of the inpatient part of treatment. Now, we're back. This has been a tough reality check for us emotionally. But, it gives us reason to continue to pray for no major problems (especially since Maggie's counts will bottom out sometime this week).

More to come. For tonight, It's time for bed.

Day 5

We completed our final day of high-dose chemotherapy yesterday.  Thankfully it was fairly routine and other than the continued diarrhea, Maggie did fairly well.  With all that she has in her to stop the diarrhea, it has not done so.  

Maggie's nutrition she receives through her night feedings have been changed to continue to combat the diarrhea.  This formula is something that is easier to digest.  The doctors also took samples of her poop to determine if perhaps Maggie is not getting the full nutrients out of her food.  They also are testing for any viral infections.  These tests however will not come back with results for several weeks.

However, in the meantime we have the GI appointments scheduled for Tuesday.  The dietitian working with us came in and warned us that they might want Maggie to not receive any food- liquids or solids for 3 days so that her bowels and intestines can get a break.  When I heard this, I was quite aghast.  If they do suggest us doing that, I will have to decline.  There is no way that you can explain to a baby why she can't nurse or eat.  It would be torture on her and all of us.  We don't want to jump to conclusions since we haven't had our visit yet, but we are prepared to continue our advocacy for Maggie.

Maggie has done fairly well since her last chemo infusion.  She has had difficulty sleeping today as she didn't take a nap and we are still working on getting her to sleep (we began around 9:15 and here we are 3 hours later still trying).  Hopefully this will not become a habit once again.  Her eyes look tired and there's just a hint of "sickness" in them.  We know that chemotherapy takes a toll on bodies, and I can't imagine what it does to these little ones who receive it.  

Please continue to pray for Maggie as her counts plummet to zero and will then rebound.  Pray that she doesn't get any infections or have any side effects to the chemo.  We will wait about 2 weeks for Maggie's counts to recover and then we begin a new phase of treatment, much similar to Maintenance.  With that, we will say good-bye to Maggie's broviac as she will finally be getting a port.  We also celebrated yesterday that she is finished with high-dose chemo for the rest of her life (God willing)!  

Thank you for your continued prayers.