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.