Day 4

We again had quite the eventful visit at the clinic for Maggie's chemotherapy treatment.  Thankfully no more vomiting, but unfortunately, Maggie's pooping has been out of control.  In about 2 1/2 hours time she had pooped more than 7 times.  With her bottom being so sore, we kept her without a diaper for most of the day to allow it some air.  With this came many accidents with urine and poop.  Morgan, my sister, and I were very busy all day cleaning up the many accidents.

With the multiple poopings, it was finally determined that something must be done to help Maggie (finally).  They gave her a short-term remedy of Imodium, but also scheduled us with another specialist, the GI.  We have an appointment with the GI on Tuesday.  Hopefully they will be able to determine what is causing her to have diarrhea, but hopefully it won't be too invasive.  

Maggie's Potassium levels had dropped very low due to the diarrhea and chemotherapy so she was given a bolus of Potassium today.  She had this done once before and it rose quite quickly.  They also found no blood in her urine today so either what they did for her in terms of fluids last night helped or perhaps her body has healed from the catheter being inserted on Monday.  

These last two days have been very exhausting for me.  We really are cleaning Maggie's bottom continually, which of course hurts her very much.  We would just like to see some relief from the constant diarrhea.  This has really been going on since January and it's time we find out what is causing it.  I'm glad that the clinic nurses could witness what we go through each day so that finally they too, could be an advocate for Maggie.  

Please pray that Maggie will continue to not have any side effects to the chemo, that it will do its job in killing any remaining cancer cells, that Maggie's bottom will heal, and that her diarrhea will go away.  

One more day before we can say no more heavy chemo!  We will all be so happy to be done with the "hard" part of treatment.  Thank you for your continued prayers.

Day 3

Some day when I look back, I will laugh at how today went. However, at this time it is not quite funny yet. We went to the clinic this morning and fairly immediately Maggie had a blow out on a blanket on the floor. No big deal, it happens quite frequently for us, so I cleaned it up.

I ordered breakfast for Maggie, though she was still on her tube feed, I wanted to get some things just in case. Yesterday Maggie had cran-grape juice for the first time and downed it like she was dying of thirst. Today I decided to order her some of the juice and some milk as well. After Maggie had about half a glass, she ended up throwing up. It wasn't too bad and I managed to clean it up by myself- remade the bed, changed Maggie's clothes, wiped up the floor etc. Not more than the other half of glass of juice later, I was in the process of changing another poopy diaper of Maggie's when she began to throw up. This time it was very forceful and I was unable to do it all myself. While calling for the nurse outside the door, I tried to calm a crying Maggie, and then after a sneeze, out came the feeding tube. It didn't come out entirely so I started shoving it back down her nose and into her throat, all the while Maggie crying and throwing up.

It was such a mess and the only way to calm her was to hold her naked little body while the nurse wiped up the vomit from her back and head. While holding her I felt the tiniest bit of warm and sure enough, she had urinated on me. A minute or two later out came diarrhea all over me and the floor. It was truly a comedy of errors. We had such a wonderful nurse who while I held Maggie, she cleaned me up, Maggie up, and the floor. I then managed to put outfit number 3 on her.

After settling Maggie down, we layed down to feed and go to sleep. Being that the nurse is going in and out of the room, construction is occurring on the floor below, and beeping machines are continually going off, Maggie ended up unable to sleep. As we sat up I noticed that Maggie's dress was all wet. When I tried to figure out if her diaper had leaked, I noticed that her feeding tube had opened up and all of her stomach contents were slowly leaking onto the bed and Maggie. So, I taped up her tubing and cleaned her up once again with outfit number 4.

Throughout the next several hours we managed to urinate on the bed 2 more times and on me through a leaky diaper. I eventually called Andy who was working at home and asked him to come bring more diapers and clothes for the both of us. It was a very overwhelming day.

Now, onto Maggie's results. They have found blood in Maggie's urine 2 days now, which means that the Cytoxan might be harming her bladder. It could also be related to the bladder infection Maggie has, but because they aren't sure exactly what it is, they are going to play it safe and give Maggie extra boluses of Mesna, the medicine that coats and protects the bladder. For the next 3 days Maggie will receive constant IV fluids and Mesna boluses versus 4 hours of Mesna. This means that we are carrying two backpacks for Maggie now as she is continuously hooked up to two different types of IV liquids.

Maggie's urine cultures came back that she has the bacteria E-Coli. Therefore they continued the antibiotic, Rocephin today until tomorrow and will then send Maggie home on an oral medicine, most likely Amoxicillin. Hopefully all of this will then take care of her bladder infection.

Maggie has had many dirty diapers today and because of it her diaper area has become red and irritated. It is hurting her when we wipe her. This is not abnormal as skin breakdown in the diaper area is one of the most common things while on chemotherapy, but on the other hand, it has been a source of infections for many children. We will pay very special attention to this area and try to keep cream on it to heal it. However, please pray that her skin will recover quickly from the rash.

I'm not sure that you all wanted to read the days events, but for Andy and me, this blog is also our journal and sometimes we use it to look back on to see when certain things happened and what we might expect in the future since we are on many of the same medicines throughout Maggie's treatment. We also hope to read this one day and remember what our life was like during the most difficult time of our lives. Our other plan is to one day share with Maggie all that she accomplished. We pray that she will not remember any of what she is currently going through, but we would like her to be able to share her story with others one day when she is older. So, if things appear graphic, mundane, or you question why we might post something, it is because of the above.

We do appreciate each of you following along with us throughout our journey. It is comforting to know that we have a support system that spans the country. And it is all the more comforting to know that there are millions of prayers going up for Maggie daily for her complete healing. Thank you for those prayers.

Day 2

We have finished day 2 of our 5 days. Today was to be a quick day in the clinic, but ended up taking a bit longer than we had planned. After Maggie's scheduled chemo, they gave her an anti-pneumonia drug that she gets monthly. We then found out that Maggie's urine culture came back with preliminary results of having an infection. Dr. French believes that it might be a bladder infection, but won't know the exact diagnosis nor treatment until the final results come back tomorrow. But in the mean time, he gave her a dose of Rocephin, an antibiotic that covers many different types of bacterial infections.

Maggie is currently napping. Since she began the chemo, they are also giving her a dose of steroids as an anti-nausea drug. We have found that it is slowly affecting her sleep. She is very tired but has a hard time going or staying asleep. Hopefully this will remedy itself quickly.

Thank you for your continued prayers. Please pray that the chemo will do its job without the side effects and that Maggie will not have any pain or symptoms with this infection.

5 Days of Chemo

Well, we began and finished day one of our five days of heavy chemo.  We went into the clinic this morning at 8:30 and didn't get started with the infusion of chemo until around 11:30.  They needed a urine sample to check the pH, and Maggie didn't cooperate right away.  It ended up being a decent day though and we were home by 4.  One potential hiccup is the possibility of a urinary tract infection based on the urine that they did finally get in the morning.  They took a better sample later in the day with a catheter and we'll get confirmation in the next 48 hours.  

Maggie is now on her feeding tube through the night and chemo or other fluids running 12 of her waking hours.  It is proving to be a bit tough as she has lots of diapers to change and she can't crawl around on her own without us trailing her with a backpack of fluids.  Our main goals are to get through the week, remain on track beating the cancer, avoid side effects of chemo (nausea) as much as possible, then start recovering.  We may have to add some antibiotics if her urine proves to show some infection.

Please continue to pray for Maggie.  She has a lot ahead of her in the short and long term.  We can't relax yet.  But, we are very, very proud of her and encouraged by her success to date.  This is a daunting week for sure, but it is better to be doing it outpatient rather than inpatient.

Easter Pictures

Here are some pictures from Easter while visiting Whitney's side of the family.

Finding Easter eggs.
Opening the Easter eggs was the best part-- chocolate and money!

Maggie sporting the same Easter dress as her cousin Leah.

* We will be posting one more Easter picture of Maggie in her Easter dress that she wore Easter morning.

On Course

We went into the clinic this morning to check Maggie's counts for her upcoming high-dose chemo scheduled for Monday. Her counts were great and she is on schedule for chemo on Monday. In the past, this chemo has been given inpatient, but we have been given permission to have it outpatient. We will spend all day in the clinic Monday while she receives the 2 1/2 hour infusion and then wait for 4 more hours while she receives the rescue drug, Mesna, to protect her kidneys. As long as she tolerates this all well, we will continue the rest of the week doing the 2 1/2 hour infusion in the clinic and finish at home with the 4 hour Mesna.

We are happy that we can stay home for this final high-dose chemo. Hopefully there will be no complications and we can maintain as much of a "routine" as possible. Please pray that our final high dose chemo will do its job without any of its side effect-- nausea, vomitting, and fevers.

On another note, Maggie has gained some more weight, thankfully. She is up to 22 lbs. 6 1/2 oz. Her goal weight is 23 lbs., however, before she can get rid of the tube, she'll have to be able to eat on her own.

Maggie did have a speech therapy appointment on Wednesday. The appointment did not go well. She cried the entire time and so no therapy was given. Her appointment was at 8:30 in the morning and Maggie was still receiving her feeding from her feeding tube, so she was not hungry. We are hoping that insurance will cover further appointments as it is very necessary that Maggie receive help. Maggie will put food into her mouth, but be unable to swallow it. So there appears to be some aversion to swallowing, textures, or something related to a motor problem. Please continue to pray that she will gain interest and be able to eat on her own.

Clinic Visit

I'm late in posting about our clinic visit on Thursday.  It was fairly uneventful, which we were happy about.  Maggie received an IVIG (antibodies), which ended up being over a 2 hour infusion.  Thankfully it was over naptime and Maggie had been given Benedryl, so it helped her to sleep longer than normal.  

Maggie received her final low dose Methotrexate in this stage of her treatment and will finish up 6-MP, an oral chemo given daily on Thursday.  Maggie's counts were very good, including her liver enzymes.  They had been a problem in the past and some blood tests were done to see if there were any viruses that might have caused some of this elevation.  Here it ended up that Maggie had antibodies for the Epstein-Barr Virus (Mono).  Now I'm not a physician and will not probably explain this very well, but the doctor said that she could have had this virus (since she had produced antibodies for it), it could have been a fever at the time of blood-draw that showed these antibodies (which she did not have), or it was a reaction to an IVIG.  Whatever it was, this most likely explains the elevation and though Maggie does have a slight elevation in her liver enzymes right now, it is chemo related.  

We also found that Maggie had not gained much weight in the second week that she had her feeding tube.  She was up 5 ounces, which is under what she should be gaining.  They decided to increase her amount of formula from 2 cans (8 ounces each) to 3 cans, and her feedings from 12 hours to 14 hours.  Maggie also is having quite a bit of diarrhea, so they prescribed us some Benefiber to include in her formula.  Her formula had already been changed to a higher fiber formula, but it just wasn't doing the trick.  Hopefully in the next week, both of these situations will improve.   Currently, we are cleaning up about 6-8 poopy diapers a day, much of which is diarrhea.  So it seems to us that what is going in is just as quickly exiting.  

Maggie has shown more interest in standing.  She will stand and hold on to a couch or the bathtub and play for longer periods of time.  We even saw her creep along the bathtub last night trying to push all of her toys into the tub.  It's encouraging to us to see her interested and motivated.  Hopefully this will continue and she will not be set back when her high dose chemo comes around again.

We are still struggling with Maggie's eating.  She seems to have some interest, but most of what is put into her mouth is taken out and not swallowed.  We finally have our first feeding therapy session on Wednesday.  Currently the insurance company has only granted us one session.  Maggie obviously needs more since she is now on a feeding tube and most likely will not be taken off until she can sustain her own weight.  It's just unfortunate that sometimes insurance companies have to get in the way of medical care.

With that I guess I will close.  Thank you for your continued prayers.  If you would still pray that Maggie will start eating/swallowing enough calories to sustain her weight, I think a lot of our "problems" will be solved.  She is sleeping a lot better than she has in the last many months and I think it's because her belly is finally full.  Not to say we still don't wake up every couple of hours, but when we were seeing every hour on the clock, every other hour is a whole lot better.  Thank you again.

Feeding tube redo

Just a really quick update.  Unfortunately around 6:00 am this morning, Maggie pulled her feeding tube from her nose.  I think it was an accident as she was sleeping on her belly and rubbing her nose.  So, as we speak, Andy has taken Maggie back to the hospital to have another NG tube inserted into her stomach.  It was so traumatic for her last time that I only pray that the procedure will go quickly and she will return to her happy self again.  

Maggie has been doing very well, talking and crawling from room to room.  Not to say that she still isn't needy and wanting to be held all the time, but she is venturing out and discovering her independence, which is a clear sign that she is feeling better.  Her sleep is getting a little better.  She will go about 3 hours when she first goes to sleep and then every 1-2 hours after that.  That 3 hours is a lot better than what we've had.  On Saturday, before Easter, Maggie slept for 5 hours and then another 3-4 hours after that.  Her feeding pump beeped 2 time during her sleep, but it didn't wake her.  It was wonderful to be able to sleep a little-- our own little Easter miracle.  

Though the doctors, nurses, and psychologist are telling us that we need to allow Maggie to cry to sleep and self-soothe, I do not agree with it.  After much discussion with Andy and attending a Le Leche meeting, we have decided that we will do what works for us and if that means that Maggie wants to nurse to sleep, we will do so.  We will continue to revisit the issue, but I want to do what's best for Maggie and if it's comfort that she needs every hour of the night, then that's what I'm going to give her.  

Thank you for your continued prayers.  Please pray that this feeding tube will remain in Maggie and that she will want to eat on her own.  We are still struggling with her food interest and intake.  I would really like to see her take in food because it sounds like this feeding tube will remain in her until she is able to maintain her weight.  

Clinic summary

Yesterday morning we went to the clinic for scheduled chemo dependent on Maggie's counts. Maggie's counts were good enough and her liver enzymes were only 2x the normal limit opposed to 9x the week before. The blood tests for different viruses, etc. that could be causing the raise in her enzymes did not come back, but it appears that the Methotrexate (chemo) that she receives weekly might have been causing the problem.

Maggie has also gained some weight. She was up about a pound and a half from the week before (her weight is about 21 lbs. 11 oz.). Her diarrhea is still a real issue so they have added fiber to her nightly formula in the feeding tube. This hopefully will help with some of the Potassium loss as well if we can get the diarrhea under control.

Other than that we are still on schedule with her chemo. Things look pretty good and Maggie is doing well. Thanks for keeping Maggie in your prayers.

Our Daily Grind

I thought I'd update you to let you know how things are going. Maggie is handling the feeding tube quite well. The first day she cried whenever she touched her face or looked at herself in the mirror, however, she is doing much better. We have some comfort in knowing that she's getting nourished better while this feeding tube is in. We'll see Thursday if she's gained any weight. She still doesn't like us to touch her tubing, but this is the norm for her. When she first had her broviac, it took several weeks before she didn't get upset when her tubes were touched. Now, it seems to be the standard for her to have tubes hanging outside of her body.

Many have asked how our sleep is going, especially since she is getting nourishment at night. Unfortunately, it isn't getting any better. Actually, in some regards, it's getting worse. Maggie still wakes up hourly to be nursed back to sleep. With more food in her belly, her bed-soiling poops are more frequent. The last two nights, our cleanups were substantial enough that Maggie woke thoroughly while we tried to get her bed put together. Then it took 1.5 hours plus to get her back to sleep (lots of laps walked around our living area).

Our efforts to try an alternate way to fall back asleep also stumbled last night. Andy cuddled her to try to calm her to sleep but she screamed and swung her restraint covered arms at him trying to push away (they are weapons that can inflict some harm!). Whitney finally came to try to calm her when she heard Maggie coughing; just in time to get covered with vomit.

We're going to keep trying and are being more conscious to repeat bedtimes and nap times. Hopefully this will help. She at least is getting to bed earlier.

Maggie is in a pretty decent mood, so that is nice to see. We are going in to see the doctor on Thursday and may get more chemo--depending on counts and liver enzymes. We're also going to try to get closer to figuring out Maggie's persistent, explosive diarrhea (more adjectives would be warranted, but I'll spare you the detail). I think it's been several months now and it's no fun. I read in our childhood leukemia handbook this morning that sometimes this accompanies chemo and once chemo is over, the digestive system returns to normal. So, if that's the case, only 15 more months to go. We're also going to ask for a food allergy test.

We will still welcome prayers for patience, progress (sleeping, eating), and continued remission. Thanks.

Update and yucky tube

Thanks to all for their support while we ride this rollercoaster.  We continue to struggle with Maggie's sleep and I think this is having a domino effect on most of the other areas of our lives.  We've done quite a bit of consulting with various professionals at the hospital about sleep and will try to make some progress over the next few weeks.  It has been a tough week and the last two days were the toughest.

Thursday, we went to the clinic for low-doses of chemo and it was an eventful visit.  All told, we were there for 5+ hours because some of Maggie's counts are acting up (thankfully, not her blood counts--they're fine).  Her potassium was quite low despite the supplement that we've been giving her (due to her poor appetite and fairly frequent diarrhea).  And, her liver enzymes are high (most likely a result of all of the meds she's on).  We are dealing with these issues and they will be fine in time.  The biggest issue, however, ended up being Maggie's lack of appetite and weight.  Maggie has gone from the 90th percentile for weight when we started treatment to the 3rd, as of yesterday.  She doesn't have enough of an appetite to make good gains, and when she starts to eat well, her treatment intensifies (steroids, or chemo) and it ruins our progress.   The result:  we had delayed and tried to prevent it, but today Maggie had a procedure to insert a feeding tube (NG).  The tube goes in her nose and down her throat and will feed her for 12 hour stretches overnight.  It is secured to her face with tape, and for parts of her days and all of her nights, she'll have restraints on her arms that prevent her from being able to bend her elbows--so she doesn't yank it out.  

You can imagine that this was an unpleasant procedure and an unwanted and traumatic step for us to accept.  I will save most of our thoughts for another time, but our hope is that it helps with a number of her problems--weight, appetite, sleep, physical development.....  Along with it comes a host of regrets and disappointments on our part.  But we'll get used to it, and it is temporary (maybe a month, maybe less, maybe more).  The ultimate goal is to gain several pounds and improve some of her nutritional measures.

So far, Maggie is handling it fairly well.  For much of the day, she seems to have forgotten that it is there.  But, if she accidently touches it or sees it in the mirror, she has had a pretty furious cry as she realizes that it is there.  She'll adjust in time, but it is hard.  

As of 9:45 we're still waiting for the home care nurse to come and teach us how to use it and to deliver tonight's nourishment.  We were asked at 7 or so if we'd be okay waiting for tomorrow to get it started as they have had a couple of difficult patients.  Nope, we're not okay with that.  We didn't agree to have it put in just to wait a day and a half to get any benefit!  It was one of those times when we felt the need as parents to advocate for our child.  They are supposed to come between 10 and 10:30 tonight, we hope.

Please continue to pray for Maggie, our family, sleep, patience, quick adjustment to this change, and for much needed results.  We pray that this, though difficult, will be the catalyst for a lot of good improvements.