Landmark

Today is a big day for Maggie--last year on this date, we began our battle with leukemia. We are blessed to have survived the last year with Maggie still on course and with no relapse. For this we are very grateful.

Our memories of the events of Monday June 30, 2008 are vivid and horrifying. At the same time, I (Andy) felt strangely calm once we were sent on our way to the pediatrician, then the lab, then to Children's Medical Center to meet Dr. French to discuss the most likely diagnosis: leukemia. At that point, we had been waiting three days for biopsy results after being warned that lymphoma or leukemia was likely. Those were impossible days. I felt some comfort finally knowing what we were up against, and most importantly, knowing that we were going to begin treatment. Whitney, on the other hand, was reluctant to believe that we'd get a confirmation of cancer. For her then, when the final news came down she was totally annihilated. I think my sense of peace was a blessing that allowed me to help us get through those first couple of days.

Of course there have been many days in which Whitney was our rock while I worried enough for the both of us.

Along with the significance of remembering what happened last year, we also mark the halfway point of Maggie's treatment. So, we look ahead to the next year; hopeful that it is relatively uneventful, and that the treatments she receives will finish off any trace of cancer cells in her body.

We ask for your continued prayers for Maggie and for all children (we've met and encountered so many!) fighting for their lives.

Good days

We continue to have such good days with Maggie. She has been very smiley and extra chatty. We spent the weekend celebrating a wedding in Michigan-- our first opportunity to get out of the state and travel an extended distance. Maggie did wonderfully in the car. She slept, ate, and again talked. I am beginning to believe she might have a little of me, when I was a child, in her-- always talking. Regardless, it is so wonderful to hear her.

Today, I practiced with Maggie how to climb up the stairs. The first time we did so, she cried the entire way up. However, this evening, she pointed to the stairs and again I helped her and she climbed up the final step all by herself. When this little girl is motivated, she can do anything. We just have to find ways to motivate. Like I said last week, I think most of the physical therapy will have to occur from home. We will continue working with her as our goal now is to get Maggie walking by her second birthday.

Maggie had her counts checked today. They still look good, though her blood count is beginning to rise some. This could eventually mean that they will need to increase the dosage amount on her chemo. Her potassium and bi-carb (that which measures her hydration) were a little low and at the lowest range of normal. It worries me as she was still on her TPN during the blood draw this morning which is giving her fluids. Once she is off, I don't know how we are going to keep up her hydration, especially since her diarrhea isn't extremely horrible.

With that, I will say goodnight. We have had such busy days and weekends lately. I am teaching two classes this summer at the college, which are taking a lot of my evenings and any free time I have (which normally doesn't begin until after 11:00 pm.) Andy is wrapping up final revisions on his dissertation, and we are now busy keeping up with the crawling Maggie. I will never complain, but instead I smile as I walk into the room and find a trail of food due to Maggie pulling food from the pantry to explore. She is finally beginning to act like a toddler. How I love it so much and pray that it continues forever.

P.S. Note the new family picture on the right side of the page. It was taken at the wedding in Michigan this weekend. You can almost see a smile from Maggie. I believe they had just mentioned the cake was being cut. She loves her sweets!

Big Week

It has been some time since we've posted. We have been especially busy with weddings, showers, work, and school. I guess they say, no news is good news.

And it has been good this week. Maggie has continued to feel better and better. She is very chatty, smiles often and laughs. Oh how wonderful it is to see and hear these things. I was telling Andy the other day that I really don't remember the last time she so openly smiled and laughed for us.

Maggie is also much more independent as she will explore in a room without us. I will sometimes peek in and hear her babbling to herself, and even giggling. She crawls around the house looking for us and is beginning to truly recognize who "mama" and "dada" are as she will point to me and say "mama." Her vocabulary is increasing and when she says something, she expects us to know what she is talking about. I go through a large list of words that I think she knows before I get it. I know when it's the correct word because she will get very excited and shake her arms or point.

Maggie is currently in her second week of physical therapy for her delayed walking. We haven't gotten very far. The appointment is 30 minutes and Maggie spends about 26 of those minutes screaming at the top of her lungs. She is expected to stand and walk along while holding onto a ledge. She would much rather prefer sitting on her mama's lap eating cheese. I believe that we will get the most out of her physical therapy if we do the majority of it at home. Maggie just doesn't trust strangers, unfortunately.

Andy took Maggie in for a clinic visit today. She received her monthly anti-pnuemonia infusion and IVIG (antibodies). She also got her port reaccessed, which she hates terribly. She screams throughout the entire process. They numb the site that the port is placed and then stick a needle in it to allow access into her vein. The needle with its dressing can last a week long and then it will need changed. Unfortunately, Maggie has had more accessing of the port than most children do at this stage in treatment, due to the TPN (nutrition).

Dr. French was happy to see how Maggie was doing. She is weighing 24 pounds now and though she has a large appetite, we just can't quite figure out how to give her high calorie foods. She much more prefers popcorn, crackers, pretzels, cheese, and bits of potato. Her butter and yogurt craze have ended. She just seems to go through phases and it's always a trick trying to figure out what she wants. Dr. French envisions Maggie remaining on TPN until after her next bout of steroids, which is 3 weeks away. Hopefully after that, Maggie will still be looking good and we can wean her off.

Though I know it's not important, I would love for Maggie to not have any tubes sticking out of her body. Especially since Maggie has never experienced the swimming pool, I would love to be able to do that yet this summer. Before any of that can happen though, we really need to be able to regulate her diarrhea. She is still continuing to have some each day, but it is not getting out of control, thanks to the TPN for rehydration and supplemental potassium, as well as Immodium.

As you continue to pray for Maggie, please pray that her diarrhea will be completely healed, that her counts will remain at an appropriate level, that she will build strength enough to start developing her motor ability, and that she will continue to eat and become nourished through the food (as well as gain weight).

On another note, I just want to share a personal story unrelated to Maggie. Throughout this last year (it has almost been a year, if you can believe it), Andy has been an amazing father. He has been working on his doctorate in Psychology since 2004 and was on track to graduate this July. When Maggie was diagnosed, Andy decided to step down for a year to be with Maggie. Though we have been fortunate to attend most doctors appointments and stay in the hospital together with Maggie, Andy has cared for her during the time that I worked. He sacrificed his education and career to be with Maggie and I think that is very honorable.

The reason for my short explanation is to also congratulate him as he defended his dissertation this week and passed. Through all of this mess, Andy managed to complete his dissertation and all of his efforts were rewarded this week. It's quite a feat to be able to do something like that and take care of a sick child.

Andy has one more year left before he will graduate and starting this September he will be taking on an internship in Cincinnati daily. This will require a lot of his time and thus we will be dealing with some changes. A lot of our life is up in the air right now, but it's times like these when we feel a step closer to one of our goals-- a career.

But more importantly, watching Maggie right now and seeing her feeling so well, while also responding well to treatment, we are getting closer to the most important goal of getting her healthy. I think I can speak for Andy-- that is our ultimate goal and thus the reason why we have and will continue to sacrifice our lives for her.

Diarrhea Returns

Well, we are in the midst of steroid week. It has not been fun as Maggie is fussy, cries easily and is hard to entertain. She has had much interest in food, however, it isn't the food we seem to be offering her. We are having a hard time finding what she likes, other than yogurt and butter.

To explain how intense steroids can be, I was up with Maggie at 3:00 a.m. on Wednesday morning because she wanted a piece of bread (though she only took 3 bites) and yogurt. It was quite crazy to see her eating like that. On top of that, Maggie is now a whopping 23 lbs. 15 oz. She has gained 4 pounds in a little over 2 weeks. She is becoming quite the load to be carrying around all the time...

Unfortunately Maggie began her diarrhea again yesterday morning and though we have given her Imodium, it hasn't stopped her. Her numbers still look good with hydration and potassium, however, if this continues they will most likely drop. I put a call into the doctor today to ask if there would be any way to increase her fluids to make sure that we don't end up back where we were a couple of weeks ago.

Andy seems to think it is medicine induced as Maggie was doing very well eating food and keeping her stools at a minimum. If that is the case, I hope that as she completes this round of medicine, her body will go back to normal.

I am quite stressed, frustrated, and feeling hopeless that we appear to be going back to the beginning. It just seems like it never ends. We don't appear to be catching any breaks, both in the area of Maggie's treatment and our personal/professional life. I know that we are not owed anything, but I am beginning to think that we might have enough stars on our badge to be given one good thing.

Please pray for Maggie that this diarrhea will heal itself and she will continue to improve as she had been doing.

A Favorite-- Brushing Teeth

Dipping the toothbrush in water seems like a good alternative to paste.

Brushing Teeth Part 2

Taking a break from brushing teeth to read a book.

Back to work...

"I'm done."

Who needs to walk when you can just point to what you want.

"Please take this now!"

Hats

The finger in the nose is a trademark of Maggie. Whenever she gets nervous or anxious, she immediately sticks her finger up her nose. When she had her tube inserted in her nose, she only had one option, but since it has come out, she has double the pleasure. It's so nice to see both cheeks once again. We hope we won't have to go back to the feeding tube and Maggie will be able to maintain her weight through eating.

"Please don't take my picture. I'm very shy."

Our neighbors have a 2 year old who will pass grass to Maggie through the fence. Maggie has enjoyed this experience and thus the reason for the new found interest in grass.

Maggie is playing with some grass outside. This picture was taken the weekend after we returned from our last inpatient stay. She was willing to be by herself exploring for awhile, which we are so happy to see.

Maggie loves her hats. Whenever we read books or watch tv, she always points out the person (or animal's) hat. It's funny though because if we try to buy her a new hat and have her try it on at the store, she gets very upset. She wants to wear the hat that she has on at that current time. Luckily she gives them all a chance when the tag comes off and it's been sitting in our house for awhile.

Broviac Pictures

Hopefully these pictures aren't too graphic for you, but this is a picture of Maggie's broviac the day she went in for surgery to have it removed. This device saw us through the very hard times of chemotherapy. We grew so attached that we asked her surgeon if we could keep it. He cleaned it off for us and someday we'll show Maggie how she received her medicine.

Maggie had grown quite fond of her broviac, as she would help me clean it with alcohol swabs and even try inserting syringes of medicine into it. I believe she might just work in the field of medicine someday.

Pictures

There's something about Maggie's look in this picture that says "spunky." Also, a future tennis player...

This was taken the day after we finished our first inpatient stay with chronic diarrhea and dehydration. We were so happy to be able to take walks outside in our neighborhood. You might also notice that Maggie's hair had begun coming back in before the last high dose chemo knocked it out again. This will be the LAST time Maggie loses her hair.

This picture was taken on Mother's day while in the hospital. Maggie loved riding in the red car and is carrying her Mommy's favorite flowers, lilacs. What a gift for Mother's day!

Another picture of Maggie with that yummy dirt pudding. How good it is to see pictures of her eating!

This picture was taken at the beginning of April, before our big fiasco began. Maggie is quite happy eating dirt pudding (she takes after her mom when it comes to sweets). Maggie had just gotten the feeding tube placed a couple days before.

Counts

We held our breath all day long for our afternoon clinic appointment. I was very nervous to see what Maggie's counts would be. In a way I was thinking about how our life could quite possibly change today if we received bad results. Maggie's white count had not ever gotten to the number it was last week, 11,000. Though she was within the normal range (6,000 to 14,000), she was higher than she had ever been since being diagnosed.

We received only half of her counts, but her white count (which is the one we were most anxious about) was at 2.5 (or 2500). This was wonderful news for us as the chemo is doing its job (and doing it well). We will take this as our last sign of evidence that Maggie is indeed doing well and is kicking cancer in the butt.

All in all, Maggie is doing wonderfully. She wants to eat almost all the time. It will be 11:00 pm and we'll be trying to get Maggie to sleep (for the last 2 hours) and she'll spot her high chair and want to eat. She is in that chair more than she is out lately. We are happy to see that and hope that it will continue. Our goal is that she will be able to maintain the weight that the TPN is giving her (she is currently weighing 23 pounds 4 oz.). We begin steroids now for 5 days, in which we will probably lose our chatting, happy baby, but hopefully after they are through, Maggie will be back to her old self.

Thank you for your prayers, especially today. We appreciate them all. And now, I am off for a walk. Enjoy the beautiful weather as we continue to do.

Quick

Please say a quick prayer for Maggie tomorrow as she is going in to get her counts checked and have more chemo. Specifically, that the chemo that she started on Tuesday would be kicking in and lowering her white blood count.

In many ways, Maggie has had a great week. Her mood is better, she has an appetite, she only had one evening of diarrhea (and that was resolved with some medicine) and she has gained weight. Of course, the most important variables are her bloodwork and chemo. Those trump everything else that is going on.

We all need a few routine weeks to calm all of our lingering anxieties, and tomorrow is a big start.

Thanks.

A gift to Suspense/thriller novel enthusiasts....

We had a not-so-funny experience today...or you could look at it as fate's twisted sense of humor.

We ended up in the clinic this morning (unexpectedly) but everything checked out okay, Dr. French was happy with how Maggie looked. They were due to draw some bloodwork to confirm that she is handling the TPN well and that the nutrients are at an appropriate level in the fluids. So they drew blood, took away Maggie's port access (to give us time to give Maggie her first bath in 2 weeks), then homecare was to come out later in the day to re-access her so that we can continue Maggie's TPN tonight. Her port access can only last one week at a time before they have to remove the dressing and needle and give her new sterile replacements.

Well, when homecare arrived at our house, the nurse mentioned that some of Maggie's bloodwork was "funky" and they wanted her to redraw them. We asked what was "funky" about them but she didn't know. This comes on the heels of Dr. French mentioning this morning that the only reason he would check her bone marrow again is if something "funny" showed up in her labwork (i.e., something that would make him suspect a relapse).

I called the hemonc clinic and asked the nurse what was so "funky" about her labs. She said that they indicated that a lot of Maggie's levels had bottomed out (hemoglobin, platelets and electrolytes). I asked what her white blood count was, and she mentioned that it was 3,000 higher than it was on Monday. This sounded really scary. She also mentioned that it was possible that the labs they drew were diluted from the saline flush that sits in her tubing before drawing her labs. So our options were a flawed blood draw, or a set of numbers that looked frighteningly close to what the beginning of a relapse would look like. White cells dividing out of control and pushing other counts down, down, down.

So homecare drew more labs, put a dressing on Maggie's new port access and went to take the blood to the lab. Whitney left right then to go teach a class (good luck keeping any semblance of concentration, dear), Maggie went down for a nap, and we all just waited to hear if the new numbers looked any better.

An hour and a half later, I got the call from the clinic that Maggie's counts were fine....the morning labs were erroneous. It was a rather uncomfortable wait considering the relapse concerns we've had of late. I interrupted Whitney's class with a phone call to set her mind at ease.

Consider that a short, suspenseful story for your reading pleasure. I assume that you are currently sitting at the edge of your seat.

We went out to eat tonight to celebrate surviving another scare. Maggie is eating pretty well (she has lots of interest which is fantastic), her stools are good so far, and she certainly has more energy than in past weeks. We feel good about where we are at right now.

And, I think we sometimes underestimate how strong Maggie is.

Thank you for your continued prayers for our strong little girl.

One day at a time...

So, it is apparent that we have to take things one day at a time. One, because the whole journey is too overwhelming to think about its all at once. Secondly, because we still don't really know what is causing everything that has gone on for Maggie. So, we embrace every day that Maggie does alright.

Maggie has begun her oral chemos again and will get her IV vincristine, and a week of steroids starting Monday.

Today was a decent day as Maggie did well at her GI appointment (Dr. Khan was encouraged about Dr. French's decisions about TPN, removing the feeding tube). Maggie's nutrition levels are creeping up a bit closer to normal. Her weight, though inflated because of all of the fluids she's getting, is 3 1/2 pounds higher than it was a week and a half ago when Maggie was admitted for dehydration, the ear infection, and the rest. We've begun feeding her a little bit, and she was pretty eager to eat, especially tonight at supper. She has eaten food for 1 1/2 days now, and her stools are few and far between. This is really nice. Perhaps more evidence that Maggie's bad diarrhea in the past has been due to chemo, not necessarily her diet.

Our appointment with Dr. French yesterday was a bit uneventful...he doesn't know why her organs are enlarged, he didn't even make a guess when we asked him. That's a bit unnerving, but he still doesn't believe it is due to relapse. I guess we'll continue to mention that word every post here until things reverse a bit or if a test identifies another cause.

Maggie has had some good times at home lately. She's more independent, is back into her books (it had been a while), and giggles when tickled. She's been a serious chatterbox of late, too.

We're waiting for easier days and less uncertainty, but we'll accept the last few days as real blessings. Again, we're going to give the "one day at a time" adage a shot.

Please continue to pray for Maggie, primarily that her cancer never returns, but also that she can maintain her treatments without too many side effects.

Lab Results

We haven't posted for a couple of days, but I wanted to share with you some of the things going on. Andy gave a quick update the other night about Maggie, her low-grade temps and blood counts. Maggie continued until Sunday with a low-grade temperature. This added to our already worried minds about the frightening "R" word. On top of that, when Maggie's labs were drawn on Friday, her white blood count had gone from 2.7 the previous day to 7.3. This huge jump scared me to death. We haven't seen Maggie's white count that high in a long time and of course, the first thing I thought of was relapse. When kids relapse, one of the signs is an elevated white count. Though the range for a normal white count is between 6.0-14.0, we feel much more comfortable when it is low.

Before we left the hospital, I spoke with Dr. French and he reassured me that it was okay. On top of that, Maggie had an ultrasound Friday and her liver and spleen, according to the technician, were slightly larger than her Monday ultrasound. So, it just seemed like everything was pointing to that horribly, frightening word in our minds.

Today, Maggie had her labs drawn and Andy and I just held our breath all day long. We didn't know what they would look like, given that they jumped 5 (thousand) in one day. We were expecting the worse and wondering how our lives would change, whether we had the strength or energy to do it, etc.

With much prayer in our house, especially today, we finally got the call around 4:00 that Maggie's white count was 7.5. This was wonderful news to us that her counts had only jumped .2 (or 200). The rest of her counts looked really well, especially her hydration levels. The normal range is 20-28 and Maggie's was 27.6. Her potassium was up too (4.3- normal range between 3.7-5.6), which is one level that always seems to drop. There were some liver enzymes that were a bit high, whether related to the TPN (IV nutrition) or chemotherapy, we aren't sure. We are thankful though that her counts look good. And though I should say that we will stop worrying about that horribly frightening word, but I can't guarantee it. I believe it is on the minds of every person who has a loved one dealing with cancer, especially when it's their dear precious child.

So, how is Maggie doing? Pretty well, actually. Since we've been home, she has become a chatterbox. It is so wonderful to hear her talk. She is beginning to smile more and I even got a couple of laughs out of her when tickling her last night. We can definitely tell that she is putting on some pounds. Most likely it's the fluid, but we hope that she might be adding some meat to her bones as well.

Maggie is still not allowed to take anything, other than water, by mouth. We go to the clinic tomorrow morning to re-evaluate Maggie and quite possibly start her back on oral chemo. Dr. French said he'd eventually like to start adding foods to Maggie's diet, but might need to give her an appetite stimulant to help her.

I have said before, I don't believe she'll need one as she is plenty ready to eat. We still don't eat in front of Maggie, but tonight, we got take out and went to an area that has a fountain where children play in the water. Maggie watched for awhile while we ate behind her stroller (and out of her sight). She eventually caught on that we were doing something and when seeing the food, immediately wanted some. I sat her on my lap and she began feeding me with the fork. After several bites, she quickly grabbed a green onion and shoved it in her mouth. I pulled it from her before it could be swallowed, but she was even faster and grabbed a handful of pad thai and shoveled it into her mouth. She seemed pretty happy to be able to eat and was very angry when Andy took her away to the fountains so that I could finish my meal. I could see her pointing back at me (or more appropriately, my food) and it took some effort to calm her after being pulled away.

So, I believe my little girl will be quite ready to engorge herself again when that wonderful time comes. But more importantly, I pray that her little body will be able to absorb the food that she eats and that we don't start the cycle of diarrhea all over again.

Please continue to pray for Maggie, that her intestines will heal, that she will be completely healed of cancer, that her organs will go back to their normal size (and her liver enzymes will go back to their normal levels), and that she will continue to get the nutrients she needs in order to grow and develop.

From home...

Maggie flirted with a fever this morning (getting up to 100.6 or so) before dropping.  She had another ultrasound, had trouble with her IV access, had more labwork done....

But we are now at home and we are glad to get the chance to enjoy our own bed. 

Trust

Today has been an okay day here, which is a bit of a relief.  We had to adjust Maggie's potassium in her fluids again as it was low, but that's been adjusted.  I (Andy) have been working hard the last couple of days to find a way to relax a bit.  This last stretch has been pretty overwhelming, with worries about the diarrhea, her organs, new symptoms (like bloody vomit), lots of unknown causes of these issues--and the inevitable worries about relapse.  Yeah, that's the biggest one right there.  There have been times this past week that we've worried about it quite a bit.  The first time I told Whitney a week ago that I was worried about relapse she ended up laying down flat on the ground in our bathroom for several minutes.  The thought just sucks the life out of you, makes you desperately depressed, horribly frightened.  I can't describe the feeling.  Let's just say that I was growing tired of having the feeling--we both lost weight this week from all the worrying and losing our appetites.  I can't continue to worry about it without losing my mind.

So again, I've been working on doing something about it.  I was given a timely set of meditations with scripture from another family (they had no idea how appropriate the timing was).  I am working hard to trust that things are okay, and that I can worry about relapse if they tell us that Maggie has relapsed.  So trust in the doctors (who continue to doubt that a relapse has happened...so that is comforting).  Also, more importantly, I am trying to trust God in this situation.  Not that my trust would somehow manipulate the situation in our favor, that's not it.  But I realize how small I am, how little control I have over the situation, and how God has been faithful during the toughest times in my life, during each transition, whenever I need help.  And I can't do it all alone like I seem to try to do sometimes.  

So I felt at peace this morning when Dr. French came in (even though Maggie's platelets and potassium dropped overnight).  As it turns out, Dr. French gave us a pretty optimistic visit.  He continues to search for viral causes of her diarrhea and/or her swelled organs.  Though it is unlikely that we'll find a positive result (because there aren't many viruses that can be confirmed with a reliable test) he remains steadfast in his belief that there is a viral cause for much of what is going on.  We have a plan to let Maggie bulk up a bit on her TPN and then transition to eating solids (maybe bypassing the feeding tube altogether).  He also thought her liver and spleen felt smaller to his touch....which is great, if true.  Maggie has gained some weight since Sunday (almost 2 pounds, probably from all of the fluids she is on).  Finally, Maggie has stretches when she talks a bit more and smiles a tiny bit more than she has the last while.  We have no guarantee that tomorrow will be better than today, but it felt like a positive day.  Not a hugely positive day, but better than most of our recent ones.

We also met a new family, who has a 7 year old girl named Ally, who is one week into her new life with ALL Leukemia.   Please pray for her and her family.  One would never know how many families struggle with horrible childhood cancers until you spend time up here on a cancer floor in a children's hospital.  Right now, there is a new baby next to us (don't know if he/she has cancer or not), Ally, Nan (2 year old with AML Leukemia), Aubrey (a 1 1/2 year old with AML) and quite a few other filled beds.  Lincoln, a 5 month old with ALL went home tonight (will return Monday for more chemo) and Seth, a teenager we recently met, went home following his last scheduled chemo for a sarcoma.  Plus the dozens of families that we've met along the way from Ohio, South Carolina, in our hometown of Orrville (Go Brian!, close to 100 days post transplant) on the west coast and many places in between.

We are energized when we can share our struggles with other families who know our pain so intimately.  It just helps us feel better.  We are determined to take things a day at a time and to try to trust a little bit.

Thank you for your continued prayers for Maggie.

Hospital Pictures

The Plan...

Well, we have a plan (possibly).  They have taken Maggie off of the tube feeds and Andy and I pulled Maggie's tube from her stomach.  It's been almost 2 months since we have seen both cheeks of Maggie's and we are very happy to be able to see her whole face (and kiss both cheeks).  

The plan is that Maggie will be on TPN (nutrition that goes straight to the blood stream) for several days to give her complete bowel rest and nutrition that she is not receiving through her tube feeds.  We met with a GI doctor today who has decided that Maggie also needs to have a CT scan of her abdomen to make sure that there is not an acute intestinal infection.  This scan will take place in the next day or so.  They have also begun taking stool samples once again to check for any viruses or bacteria.  The idea is that if she doesn't have any viruses or bacteria, they might be willing to introduce Immodium or something similar to help slow things down.

In a couple of days (possibly by Thursday) they will re-evaluate Maggie, her diarrhea, the tests, nutrition, and so on.  If all is well, they will look at sending us home on TPN.  We are taking a break on chemo as Maggie's counts are still too low.  

We have been very on edge the last week.  New things keep popping up and our minds immediately go to relapse.  Maggie's ultrasound yesterday showed that her spleen and liver have slightly enlarged from last weeks ultrasound.  The cause, we are not quite sure, but the liver is functioning normally according to blood tests.  GI believes that the enlargement is due to Maggie's condition of having leukemia, the chemotherapy, etc.  Regardless, we'd like to have a resolution to everything as soon as possible.

So that's the plan.  Please pray that this might be the solution to Maggie's chronic diarrhea.  Pray that the diarrhea will stop or at least be under control, that Maggie's organs will not be damaged by the TPN and go back to their normal, healthy size.  Pray that Maggie's infection will go away and that her counts will recover quickly.  And pray especially that we can begin chemo again and that Maggie's cancer will never come back (and our worries will subside).  

...

So, this is where we're at.  Maggie's bleeding issue is under control.  She's not throwing up anymore, and her stools--which were testing positive for blood overnight and this morning are now negative.  So she was bleeding somewhere in her throat or stomach, I guess, and it was coming up when she vomitted, and was getting digested in her stool as well.  

Her fever is under control, she's keeping it down without tylenol.  

Her hydration levels are back up to a better range.

She had an abdominal ultrasound repeated and it the tech thinks things look similar to last week (the doctors do the official interpretation and reporting, though--we'll hear more tomorrow).  Maggie has several organs that are either slightly enlarged or at the upper limits of the normal range.  This may be due to the stress all of her diarrhea is putting on her body.    

Her blood counts are still low enough that Maggie can't fight infections on her own.  This will take a little bit of time for the chemo from the past week to wear off.

Her diarrhea is still our biggest issue.  It is a tough, vicious cycle at this point.  She got diarrhea in February (from something, maybe a virus initially).  Her GI tract was weakened and made vulnerable.  Chemo continued in order to treat the cancer...the diarrhea worsened.  This part of the cycle repeats over and over.  

She has trouble absorbing enough calories because of the diarrhea, and she is undernourished and underweight.  This can make diarrhea worsen as well.  It feeds on itself.  Due to her weakened state and the chemo, her blood counts dropped, she picked up an infection which requires antibiotics.  Antibiotics cause diarrhea.  Today she had liquidy stools close to 20 times, many of which smelled like antibiotics.  So the diarrhea improves slightly with time, but chemo or antibiotics, or undernourishment itself causes it to worsen.  And on, and on, and on.  For 4 months.  

This seems to be where we're at.  We are begging for a plan to break the cycle and a medication to reduce the diarrhea enough to continue with chemo and to keep her from dehydrating.  But they are reluctant to give immodium or anything similar, because there are risks involved if she would get too stopped up.  We think it can be used conservatively but regularly, at low doses, to improve things a bit and get things going in the right direction again.

Dr. French is also is close to taking her off of her feeding tube feeds and giving her nutrition directly into the bloodstream (via TPN, which is IV nutrition).  This is a nice option as her bowels would get a rest and her nutrition and weight would definitely improve.  But, TPN is can be taxing and potentially dangerous to the liver.  And Maggie's liver is already taxed and swelled.  So we'll see if they move forward with that or not.

We're blessed to have a few of Maggie's issues on the way to being resolved today, but we're still very frustrated.  There seems to be no end in sight, no plan in place, no commitment to make the decision to get things going again.  And no real consensus about the true cause of the diarrhea and the role of chemo in exacerbating it.  We don't need complete healing from the diarrhea, just to manage it so that she can get back on her daily and weekly oral chemo (so the cancer doesn't come back) and so her body doesn't get dangerously dehydrated so regularly.

Maggie still isn't feeling well, overall.  She's not acting like herself.  She did start being more verbal and had 2 or 3 smiles late tonight.  Hopefully her mood will improve when the ear infection is further improved tomorrow.

Thanks for following along with our depressing and complicated saga  We will hopefully enjoy passing along good news in the near future about the diarrhea getting better and staying better.  But right now, that seems hard to imagine for us.  

Scary day

We are in the hospital again, after a pretty frightening afternoon.  Maggie seemed to be doing okay this morning as we visited Andy's family for a birthday celebration in Columbus.  But, around lunchtime, Maggie threw up and there was a little speck of blood in her vomit.  She started acting tired, started feeling warm, and we ended up leaving to head home (a little over an hour away) and check her temperature on our trusty thermometer.

When we got home, her temp was reading 103.4 and she started to throw up some more, this time with even more blood.  We ended up in the ER and had a really rough wait when her labs were yet to come up.  We were very worried about relapse--these were new symptoms on top of a rough week last week, and the ER doc wasn't as reassuring as we would have liked.  Those were amongst the toughest minutes of our lives, without a doubt.

Her white count and ANC are down significantly from a week ago, but she does have healthy monocytes (healthy baby white blood cells) and her platelets and hemoglobin have gone up.  By the time we sorted it all out, we were comforted by these as they signify functioning bone marrow that is still making healthy cells.  Her physical exam revealed quite an ear infection (new territory for us) so that is the likely cause of the fever getting so high.  The blood could be from a tear in her GI tract from the force of vomitting, or a sore related to her chemo, or maybe some kind of ulcer.  She is also a little bit dehydrated and has lost 1 1/2 lbs since last week.

Overall, her body seems to be overwhelmed by chemo and is having some toxic reactions (seemingly including her diarrhea).  We are pretty comfortable that these aren't signs of a relapse at this point, as there are solid explanations for all that is going on.  The doctors don't seem concerned about relapse either.  But it was agonizing for a while tonight.

Please pray for a good night and day for Maggie.  We need to have good things happen, as we're exhausted from this stretch.   In the next 24 hours we're hoping to have the bleeding solved and resolved, her infection getting better, and if her ANC would come up a bit, that'd be nice too.  Also, we hope to start making plans to treat her diarrhea when chemo is resumed.  Most of all, we pray that the leukemia never returns.  More later.