Ideal Weight

Well it appears we have hit the ideal weight for Maggie-- 25 lbs. 7 oz. I got a call today saying that they are decreasing the amount of TPN that Maggie is on because they don't want her necessarily gaining anymore weight, and they would like her to begin eating a bit more on her own.

While Maggie has been allowed to eat while on TPN, her appetite has decreased quite a bit. Before TPN, Maggie ate constantly because she wasn't absorbing anything. As she has continued TPN, I have noticed her gradual shift to eating much less. While I definitely don't know what "normal" is due to our always having eating issues (whether she didn't eat at all during the heavy treatment to eating constantly while having profuse diarrhea), I am guessing that she might be not taking enough in now. Who knows though.

The other issue with her nutrition is that her pre-albumin (measures her nutritional state) is still pretty low. It fluctuates from week to week, but the last count was below normal. Dr. Mezoff believes that Maggie's protein in her body was so depleted that she has little reserve, therefore she must build it all back up, which I guess will take some time. For this, they have also changed the amount of protein that is in her TPN by increasing it.

We will see how it all goes, but we continue to be encouraged by Maggie's disposition and weight gain. The TPN is our miracle drug right now to getting her back on track. Hopefully soon enough her diarrhea will be completely gone and her nutrition will be at a perfect state.

Latest Pictures

After perusing through our blog, we noticed that we haven't posted any pictures of Maggie in some time, so be prepared for the last month in review. I have posted about 6 entries, so make sure you take a look.

Maggie has really changed in her looks since October. Her face has shown the extra pounds that the TPN has added. Today we went to the clinic and Maggie is at her all-time high, 25 lbs. 7 ounces. Hurray! Her counts also looked very good and Dr. French was very pleased with what he saw and has heard (appears that others are talking about Maggie in the clinic).

When Dr. French walked in the room, the first words out of his mouth were "Who is this?" We haven't seen him in over a month and within that time Maggie has added almost 2 pounds to her weight and her hair continues to grow!

During the visit, Dr. French determined and without any hesitation stated that Maggie's spots on her head are eczema. With that final analysis, we are going to stop worrying and talking about "the spots." Maggie's cold continues to persists (as both of ours do at times as well) with a runny/snotty nose and a cough. She was unfortunate enough to get another H1N1 shot, but received a present afterwards which was nice, but not as nice as the second sucker offered to her. She is quite the sucker lover these days.

Maggie's leg continues to heal. She is again using it, though every now and again a bit gingerly. It appears it was probably a bruise to the bone, though she does still talk about her "boo-boo." Maggie's new favorite thing is to "write." We have found that we can take her to church and have her write (color) and it keeps her pretty quiet. Though yesterday during church she grew frustrated because she was writing with a white crayon and couldn't see it. She asked for "help," but wouldn't accept a new crayon, so instead she started screaming. Ah, not what you want to happen at church, and even better to have the minister make mention of her crying in his sermon. We have been very blessed to have been able to go to church the last 2 weeks and hope we might be able to continue to as Maggie is doing so well.

We are plugging along and having good labs keeps our hopes up. As I tell people, it gives me one more week where I can breathe and relax. Though I won't lie and tell you each Monday I hold my breath praying that Maggie's counts will come back good. There have been many children that have been hit with illness, relapse, bad news, and even death in the last couple of weeks that it continues to shake us up and reminds us of the reality of this horrible disease. Please continue to pray for those children who are battling this disease and those families who have lost their children.

But, we will walk this week knowing that Maggie is still on track and we will celebrate Christmas with the hope that they talked about in the Bible. Hope for a Messiah and hope that Maggie is completely healed of this disease.

Maggie has renewed her interest in the potty. She tells us she has to go many times throughout the day, only to have false-alarms. One evening, Andy got tired of taking her up and down the stairs that he brought it to her instead.

Maggie's reaction to opening her Christmas present from Heather (and family) is priceless. Christmas presents are going to be so much fun to open this year. As we were shopping at the toy store, Maggie would point to toys and say "mine," while pointing to her chest.

This is Maggie's walker that she walks with. She is using it to hold her up as she opens her gift.

She was very excited to open up her doll, though this picture definitely doesn't show it.

Our week after Thanksgiving

The slinky was one of the big hits of the week. Maggie loved throwing it down the stairs and even shared with Leah when she (and Brendan) came to visit.

As I shared earlier, we spent the week after Thanksgiving at my parents. We had such a nice time. During this visit Maggie started climbing up the stairs once again, she played independently and with her cousins who visited us one day. Maggie enjoyed having more people around to talk to. Aunt Mo-Mo (Morgan), Mom (Grandma), and Pops (Grandpa) played with her and I think even helped her to be less shy around others (baby steps though). Maggie also started calling me Whitney (or Wee-ney) as that is what everyone called me. She called Grandma, "Mom," because that is what we called my mom and even my dad got a couple of "Dad"'s out of her. As of the last couple of days, Maggie is has begun calling Andy "Ann-ee." This morning she woke up to the phone ringing and yelled for "Ann-ee" (she must have observed this from someone else).

In general, it was just nice to have company during the day and to get a break away from our home in Dayton. The transition from my not working to Andy working full time has been difficult at times. Last year, though I worked, I had a flexible enough job that I could work from home so we did a lot of the caring for Maggie together. With Andy gone from 7 am to sometimes 7 pm, it is a long day for all of us. Maggie demands a lot, especially during steroid week. So I was very happy to be able to have some time at home with my family, though both Maggie and I missed Andy. Thank goodness for skype as we were able to talk and see Andy daily.

The Horse

Maggie loves horses! We spent some time outside of Andy's uncle and aunts house so that Maggie could look at the ponies (not quite brave enough to pet).

Grandma Bixler joined us outside too.

The horse was quite funny as he would raise his head and show his teeth. We all laughed and Maggie imitated.

Bixler Thanksgiving

Here are some pictures of our time with the Bixler side (as well as the Miller Thanksgiving).

Maggie found that she loves to "write." She now colors with crayons in her coloring book and asks to write all the time.

Maggie with her cousin's Stella and Mira. She loved writing with them and sharing the markers.

With her cousin, Ian riding in a boat.

Arter Thanksgiving

Though I know these pictures are late in coming, here are some photos from Thanksgiving with the Arter clan.

Playing with her cousin's, Brendan and Leah (Aunt Morgan is supervising).

What a smile!

With Great Grandma Arter

Munching on fritos with Grandma and Aunt Morgan. Wherever there's food, Maggie is sure to go.

Playing

Maggie had just figured out that she could actually move her car with her legs! How exciting that mommy and daddy don't always have to be the motor.

Here are some pictures of Maggie riding her pooh car and pushing her grocery cart. These were taken right before Thanksgiving. She spends much of her time downstairs walking and cruising from toy to toy.

Ups and Downs

We have experienced some ups and downs in the last week. Steroid week completed last week-- only 6 more to go. Maggie was fairly good, however, very hard to please. By the end of the week we are always very worn out from her constant neediness and the continued asking of food. She would take one bite of an item and then want something else. Though this is not that big of a deal, it gets a bit tiring walking up and down the stairs holding her searching for an item that will satisfy.

A couple of other "downs" occurred this week. We noticed on Monday that Maggie's spots on her head have indeed returned. We are trying not to worry about them, seeing that they did go away or almost go away before returning. If they were cancer, I can't imagine that they would go away. It would be nice though knowing what might be causing these pesky little spots and even better to not have them return.

Another little accident that occurred yesterday evening was Maggie falling from our computer chair. This fall ended up causing her quite a bit of pain in her left leg. She cried much of the evening and then throughout the entire night. Needless to say we didn't get much sleep. I tried to give her some Tylenol with codine around 1:00 a.m., but Maggie ended up throwing it all up (and more) in our bed. Finally around 6:00 this morning she slept for a couple of hours straight through without waking up crying about her "boo-boo."

So, with Maggie's incessant pain, I called the clinic to ask what I should do. Robbie, our nurse, said many kids that are on steroids and chemotherapy end up with fractures with small little falls, so they scheduled us an x-ray and clinic visit. The x-ray ended up showing nothing, but with a note stating that toddlers sometime show fractures once the bones begin to heal. Dr. Broxson told us to come back in on Monday if Maggie didn't show signs of improvement (we're actually scheduled to go back to the clinic on Monday anyhow to see Dr. French).

Maggie's accident made me very upset for my lack of supervision of her sitting on the chair. She has been doing so well in her walking. She continues to do well in physical therapy by playing and not crying. She even took 2 steps by herself (and without knowing) as Nancy ( her physical therapist) was trying to get Maggie to not support herself using her shopping cart. She has been pulling herself up to furniture and her toys. It's been so wonderful to see her playing and getting more accomplished at walking. That is why I was quite upset with this accident. I don't want to fall back a step with Maggie's improvements.

Since falling, Maggie has been more timid at walking, struggles to pull herself up, and is a bit more shakey when walking and standing. However, this evening she was more interested in standing and walking again, which is a good sign that hopefully she only has bruised her leg. We will continue to watch her and hopefully one day we will report wonderful news of her walking.

We also visited Dr. Mezoff, Maggie's GI doctor in Cincinnati, this week. He was very happy to see her looking plumper. It seems that we will be on TPN indefinitely, or until we see a solid stool from Maggie. That seems a bit unlikely since we have been dealing with diarrhea for so long. The TPN has definitely helped her, as we see about 1-3 diarrhea stools a day. She is also beginning to go in the potty again (without my pushing).

I told Dr. Mezoff that the day I see a solid poop, Andy and I will have a big party. For that matter, the day Maggie walks, will be another big party, and the biggest party of all will be the day Maggie is completely finished with treatment and is considered cured. We have big dreams for Maggie and I pray each day that God will allow me to take care of her my entire life.

Please continue to pray for Maggie-- for her complete healing of cancer, that her diarrhea will go away, and that her leg will heal quickly.

Equilibrium

Between our scare with seemingly harmless skin irritation and the rough stretch that Dayton Children's oncology unit has had lately, we feel like our sense of equilibrium is off. It has been hard to feel secure in much of anything. I am happy to say that we are starting to make some progress and our days feel a little bit more like we can manage and survive them. Our "hope meter" is slowly crawling back up. We continue to pray fervently that Maggie's cancer never makes a comeback.

Maggie is on steroids (Dexamethasone) this week, and that presents some challenges. Tomorrow (Friday) is the last day of the nasty stuff; a dose in the morning and one in the evening. It is nasty in the way that it makes Maggie feel and act, and it happens to taste awful, too. This is the one of only two medicines that Maggie doesn't enjoy tasting now. Whitney is lucky enough to get to administer most of the doses now, and she has to lean Maggie back (while Maggie screams and flails her arms) and force the liquid into her mouth. It smells a little bit like rubbing alcohol, or paint thinner, or......I don't know what. It is bad. It isn't pleasant on the way down or once it circulates through Maggie's body. But, it is supposed to fight lymphocytic cancer cells, so it is a no-brainer.

I believe that Whitney has a countdown going, 62 more doses of the stuff before Maggie is off treatment in June/July. Maggie takes two doses per day for five days, one week of every month.

That being said, I am grateful that we are where we are in treatment and we can all tolerate steroid rage. It is inconvenient, but not the end of the world. Our perspective has changed.

Maggie had probably her best physical therapy appointment to date on Wednesday. She is quite fond of Nancy who has tolerated months of Maggie crying throughout her appointments. This week there were no tears, for the first time that has happened for the entire 30 minutes of exercise and play. Maggie is beginning to pull up on certain toys and furniture, cruising around, and crawling up stairs. She is less often found locking her knees as she stands, which means she's beginning to gain some muscle in her legs. We are so happy to see her progress and look forward to the day when we can announce that she is taking steps!

The clinic visit Maggie had on Monday showed her weight to be the highest ever, 24 lbs. 15 1/2 ounces. She is now in the 10-25th percentile! The TPN is obviously working, though her pre-albumin (what measures the nutritional status of her body) has dropped considerably in the last couple of weeks. Though we are trying not to read into anything, we do wonder what might be causing these levels to drop while there is evidence through her weight that she is obviously gaining nutritionally. She is not gaining on height yet, however Dr. French said height and head circumference are the last to catch up. We are very happy though to have her gaining and might I say (this is Whitney speaking), she is becoming quite the lug to carry around. I have told her she needs to start walking soon because she's just getting too big!

Finally, we know that it is hard to follow Maggie's story sometimes--it isn't pleasant or easy to have to think about what she's gone through. We appreciate that you've stuck with us and that you continue to support us in so many ways. We haven't used this blog as a forum to express our thanks to individuals, churches, families, friends, strangers...so many people. But we are blessed through the care that you provide, from prayers, cards and toys for Maggie, to gift cards and meals brought to our doorstep. We are humbled to have 87,000 hits on our webpage (and counting)--it is proof that we're not alone. There are so many ways to measure the support that we feel and we wish we could thank all of you individually. Until we find a way to do that, please know that we are grateful for what you all have done.

Blessings to you all, until next time.

End of the Weekend

We've come to the end of a nice weekend, and we're readying ourselves for a rougher week ahead. Maggie and Whitney are back after spending a week and a half away for Thanksgiving and their extended visit with family and friends. Saturday, Maggie's cousin Leah had a birthday party which brought the "mini-vacation" to a close. Whitney can probably update how her week away went later, but I think it was a success, overall.

We've been very nervous around here, as you know, about Maggie's spots on her forehead. Short story for those who don't know it...two weeks ago Maggie started showing a few circular spots on her forehead, they grew in number to 6 or 7. We were very scared because Maggie's initial presentation of Leukemia was with spots on her scalp. We knew that these looked different than what we remembered of those, but the symptom was too close to a very painful memory. Our worries were out of control at times.

Fast forward two weeks...and it is very clear that the spots are harder to find, if not mostly gone. Since I was away from Maggie for 5 days this week, I noticed a definite difference Saturday when I saw her again. They are much improved from when I last saw her. Now, even Whitney is willing to say that they seem to be getting better. The one or two that were closer to her hairline had been the most troubling to Whitney (they looked a little bit different than the others), but tonight we are having a hard time finding any sign of them. This ordeal was no small deal for us. I would go so far as to say that it changed our lives. We are appreciating every moment with Maggie, and she is a blessing to us. Thanks for your increase in prayers for us during this time. We think it is mostly over at this point and it feels so very good.

As we mentioned in the last post, Maggie has a pretty nasty cold. It isn't too horrible during the day, but her drainage seems to collect overnight and by morning she seems to be laboring to breathe. It is hard to listen to, and it scared me when I first heard it this morning. We are hoping that it clears quickly. Whitney is wondering, too, if Maggie might have an ear infection. She has been playing with one ear a little bit, so that will be checked out.

Tomorrow (Monday) is the beginning of another round of treatment. IV Vincristine and a week of steroids await us. We are hoping that Maggie's IV nutrition helps her to manage the week okay. The side effects are always challenging, to say the least.

Finally, we would ask that you send your thoughts and prayers to Maggie, Alivia, Nan, Lincoln, Ally, and all other children battling cancer. And, one of Maggie's friends at the hospital in Dayton--Ashley--died this morning from AML, a different kind of Leukemia than Maggie's. She was 5. We are all praying for her family at this time.

Flirting with illness

We had a close call this morning. Maggie was reading a temperature at 100.1 around 4:00 am. If Maggie gets higher than 100.5 for more than an hour or 101 degrees, we automatically must go to the ER to get her hooked up to antibiotics as well as get a culture of her line. Since we are at my parents, this would mean going to a foreign hospital with possibly different protocols and just in general a scary experience.

For the beginning part of the morning Maggie's temp flirted in the upper 99's, but by afternoon, it was back to a high normal. So I am hoping that this was the only spike and we do not have to deal with any temperatures. Maggie also struggled breathing through her nose much of the night, which makes me think the temperature was the beginning of a virus that she might have caught over the Thanksgiving holiday. If the fever was within her central line, I was told her fever spikes would be much higher.

So, now we are dealing with the stress of a possible virus. I hope that her body might be able to fight it before it takes hold of her body. Maggie's counts have continued to come up, higher than I've seen in awhile while on chemo. Her ANC was 4800, so this means that she should be able to fight anything that might come her way. Her labs continue to look good. I only hope that the labs are reflective of what is going on in her body-- that the cancer is completely gone and her bone marrow only recovers healthy cells.

Please pray for Maggie that she will be able to fight any infections that might be stewing in her body, that her diarrhea will go away, and most importantly, that she is completely healed of cancer.

Lab Results

We went to Akron Children's yesterday where I was able to draw blood from Maggie's port versus getting blood drawn from her vein. Maggie began crying as soon as we got into the room, but after repeatedly telling her she was not going to get an ouchie, she eventually stopped (it also helped that the lab tech stood outside the door).

After two nerve-wracking hours, Robbie, the nurse from Dayton (my therapist) called to tell us Maggie's counts were good. Her ANC went from 410 last week to 1500. All of her numbers went up slightly, which allowed us to breathe a little easier. I told Robbie that I would feel a whole lot better if the spots would just disappear. I hate seeing them there as they remind me of the beginning of this whole nightmare.

Maggie continues to do well. She is laughing, smiling, practicing her walking, and has even started crawling up the stairs again. It's so good to see her feeling so well. We are enjoying our time at my parents and visiting with family and friends, though we do miss Andy.

Please continue to pray for Maggie, that these spots will be benign, that her counts will continue to be good, and that the cancer is completely gone! Please also continue to pray for Andy and me that we will have faith and a peace.

Thanksgiving Weekend

We were able to spend Thanksgiving and the weekend with our family in Orrville. Maggie's ANC was only at 410 on Wednesday (normally under 500 they say she can't be out in public places). Seeing her counts continue to plummet scared me even more, but after receiving counseling by Maggie's nurse over the phone, she told us that we needed to make the trip and enjoy our time with family. Dr. French was not concerned about Maggie even though both Andy and I (or more so me) were very concerned about the big "R" word.

Maggie's spots have not healed yet and they continue to make me very worried. I am having a hard time with the threat of these spots and Maggie's lowered blood counts. I need to find a peace about it, but it has been very difficult for me. Andy has done a good job of putting things into perspective and has decided that the spots on Maggie's head are ringworm (and I pray that he is right). We go to Akron Children's Hospital to have Maggie's counts checked tomorrow and I hope that her ANC has recovered and her counts look great.

The reason for going to Akron Children's is that Maggie and I have stayed in Orrville at my parents while Andy has gone back to Dayton. I have wanted to get away from Dayton for awhile and things fell into place to allow us to stick around at my parents for a week. We cleared it with Maggie's doctors and were able to get the maximum amount of TPN for the 9 day trip. I am hoping that Maggie doesn't bring us any surprises so that we can stay all week and relax and visit with family and friends.

Please pray for Maggie, that the spots on her head are harmless. That her blood counts look great. And most importantly that she is completely healed of cancer. Please also pray that Andy and I will feel a peace and trust that God has everything in control.

Uneasy

Though we saw Dr. French yesterday and he told us that Maggie's spots on her head didn't look to be cancerous, it hasn't quite calmed our fears. We are still very worried, especially when looking at Maggie we can see these spots staring us back in the face. To be honest, I'm scared. I can't quite feel comforted by Dr. French as this is a very sensitive subject to us, since this was the sign of her diagnosis.

We go back and forth between thinking she has relapsed to saying she might be okay. We are just very uneasy about the whole situation-- to the point where I can't relax. I find it hard to concentrate on much else and I feel like Thanksgiving and our week after plans have been ruined. How can I enjoy myself when I am worried about Maggie relapsing?

The only thing that will put me at ease and let my mind rest is if these stupid spots just go away. I wake up each day hoping that they are gone, but not yet. And my eyes are doing tricks by making me think that they are changing in size, color, or increasing in numbers. I'm scared, really scared.

If behavior and demeanor meant anything in the grand scheme of things, Maggie would be as healthy as a horse. She's laughing, smiling, wanting to walk, wanting to play--things that we haven't seen her do in a long, long time, if ever. She's gaining weight. She's up to 23 lbs. 7 1/2 ounces. She's having the best time and the horrible thing is, it's hard for me to enjoy it with this scare.

Please pray for Maggie. Pray that she has not relapsed and that these spots are benign. Pray that Maggie has been healed of cancer. Please pray that we can have a peace of mind and trust that God is in control-- that his plan is for Maggie to survive.

To our knees

Well, we've had a rough stretch. In our last post, we stated that we were ready to be content (diarrhea and all)--knowing full well that winning Maggie's battle with cancer is the real fight. Several days into our content-filled bliss (Saturday night), Whitney noticed a series of faint spots on Maggie's forehead. Whitney and I were immediately stunned and floored (literally). We were scared to death and it knocked both of us to the ground. The spots looked different than what we saw last summer, but there were 3-4 of them and they were fairly close to where the previous ones once were.

We had an appointment today with Dr. French, so we had a rough time waiting a day and a half for some reassurance. We assumed that we wouldn't get much in terms of clarity by calling the on-call doc over the weekend. Much of the time since we first found them, we assumed that Maggie very possibly might have relapsed. Whitney's parents came down immediately to give us some company. We really appreciated that.

Ultimately, Dr. French decided that he wasn't concerned right now with what he saw. And, we are continuing to get coached-up by the nurses to find ways to relax. Maggie's blood counts were quite good, so we're trusting that Maggie is okay. It hasn't been easy though. If nothing else, we have been given lots of reminders lately that we can't take anything for granted.

Hopefully, Maggie's spots will go away soon and we can trust fully that her health is good. In the meantime, we would appreciate your prayers for Maggie's continued healing and for peace in our lives and minds.

Thanks

First, we should thank so many people for offering support in so many different ways. Whitney felt it was time for a raw and honest post last time, and it was good for us to do so. The response that followed was pretty amazing. Thanks to all who continue to be interested in our family's well-being.

Next, we should mention that we have been humbled of late in a number of ways. Most prominently, we are following a fellow infant Leukemia family that is being treated in Dayton and they are reporting some troubling news on their website. It sounds like they are going to have a long night tonight anticipating some test results with their doctor tomorrow. Say a prayer for Alivia. Also, Lincoln is another infant being treated at Dayton for ALL--he is close to moving to Cincinnati Children's for a bone marrow transplant following an apparent relapse. Nan is one of Maggie's friends who is recovering and bouncing back from a bone marrow transplant in Cincinnati. Ashley is another friend of Maggie's who is fighting following a relapse. Ally is in and out of Dayton Children's going through a challenging stage of her treatment. The families of Lydia as well as Liam are trying to live without their little ones. We have mentioned before that families that we've met who are fighting the same battle are especially important to us. I would like to think that we help and support each other (if only in spirit and via the internet) , and it is just so valuable to know that we're not alone. Of course we wish that none of us had to worry such adult-like worries about our children. Since so many of you are enthusiastic in your support of Maggie, please share your thoughts and concern with a few others. Please say a prayer for these children and families as well as the families in hospitals near you.

That being said, Maggie is pretty stable right now. Her diarrhea is significant, but her hydration is fairly good. She is sleeping a little bit better and--most significantly--she's a happier toddler on TPN. It's amazing to see what a basic level of nourishment will do. We did find out today that her urine cultures revealed traces of her UTI from last week. So, they started another round of antibiotics, this time a planned 7 days.

Maggie's diarrhea has been severe enough for so long that we sometimes get distracted from the worries of cancer. That's probably a good thing. We are trusting that for right now, we can handle diarrhea and will try to be more appreciative of what we have. For our sake, give your child or loved-one a hug and don't take good health for granted.

Lost

I have been avoiding posting lately due to my attitude. I'm not sure that those of you reading this want to hear the thoughts going through my head, but I have decided that it is time to post.

Steroid week is over and Maggie's behavior was quite good considering our past adventures with this drug. However, Maggie's diarrhea has continued to worsen. I do feel like all we ever talk about is poop, but really that is our life. That is all we talk about here in this house because that's all we do all day long-- clean up poop.

Anyways, yes, the diarrhea is outrageous right now. Actually, it just hasn't let up in the last month plus. Maggie's labs showed on Thursday that her potassium was down to 2.8. If she wasn't on TPN, we'd have been in the clinic getting a bolus of potassium, but instead they just changed the contents in her TPN bag to add more. I worry that it isn't enough though as Maggie has laid on me some tonight, which is what she has done in the past when it is low. But I guess we just have to wait and see what happens and assume that the TPN is going to take care of it (which I don't have high hopes.)

My attitude (or rather both of ours) has become quite bitter. I can only speak for myself, but I am ticked. I am mad that the TPN is supposed to be our "saving grace" and it hasn't done squat. Most of our day consists of Maggie telling us that she has to "poo." I lay her down to change her and there's nothing there. 8 out of 10 times we have false alarms, which makes me think that she is feeling stomach cramps, but you know it's coming because her belly sounds like a washing machine sloshing liquid around and making rumbling sounds. So, the times that we decide that it is a false alarm ends up proving us wrong and then we are cleaning diarrhea all over the place. Maggie had complete liquid diarrhea today in her high chair, so in the process of cleaning that up and getting Maggie a booster chair, she then had diarrhea in the booster chair. Our day consists of cleaning up diarrhea. It doesn't even phase us anymore, but I think each time it happens, our short fuse becomes even shorter.

Not to mention that nights are horrible as normally this is when the diarrhea increases, though I don't know how chronic diarrhea all day long can increase further. I will just get Maggie to sleep (and yes, I still walk her around) and as I lay her down, she poops. Then all of my efforts are wasted. Last night we went through 5 waterproof pads because our changing pad has been overworked. It cannot handle complete liquid as it just runs right down the sides. And those super absorbent diapers, not so absorbent as they advertise. I guess the diapers cannot deal with the sheer quantity and velocity of liquid streaming out her bottom. I also sleep with one ear listening for the shooting stream of liquid coming out so as to get it before it soaks the pad. I have found myself to not be as successful due to our failure in materials to do their jobs.

So, it feels as though all things are failing us, diapers, doctors, TPN, and even God. I have lost faith in God. I've been praying for 16 months, actually my whole life for my child, but especially these last 16 months and for this specific problem of diarrhea for 9 months, and I feel as though God doesn't care. He isn't doing a darn thing to help Maggie. Faith is easy when things are going good for you, but when you've been stuck in your own hell for as long as we have, it's literally impossible. Sure, I believe in God, but I am beginning to think that He doesn't care. Why else would He be putting us through this misery? To teach us something... I've learned a lot, but you know what, don't use my child as a lesson. To punish us for something of the past, our ancestors... I'll repent. I'm so sick and tired of screaming my prayers to God for healing of Maggie and not having any reprieve.

We are suffering. Our relationship with each other is on edge with each poop experience, our psyche is on the brink of hysteria, we are losing it. Sure, cancer is tough, but this diarrhea is killing us. We cannot deal with much more.

I don't know what to say. Please pray? But then again, that's what we've been doing and the diarrhea has only gotten worse. We have lost all hope, faith, and sanity.

Steroid week begins

Just a quick update, as free time is precious in this household--especially this week. Maggie had her smorgasbord of infusions yesterday, including a spinal tap with intrathecal chemo. We also learned, which I had a suspicion about, that Maggie has a urinary tract infection. So, we have made things a bit more challenging during her infusions as she is on an antibiotic through her port. The poor thing just can't get a break. I think she has had it for a month or more, but she never cried or showed signs other than heavier breathing as she urinated. Hopefully though, this problem will go away quickly.

Maggie's CBC (white count, etc.) looked good and her spinal fluid was clear, however, once again her bi-carb, that which measures hydration was considerable low. Maggie's diarrhea continued to be very bad on Sunday night and it showed through her electrolytes. I think the doctors are baffled as to why this might be continuing, considering she is on TPN. Her weight also measured at 20 lbs. 11 oz. on the Almost Home scale. If this is her true weight, she has lost a pound since Wednesday. However, after seeing the weight, Dr. Broxon asked us to go to the Hemonc clinic and weigh her on the scale she always gets weighed on. This weight ended up being 22 lbs. 5 oz., so hopefully this is her correct weight. If not, I am feeling even more hopeless than before.

With that, the steroid craze has officially began. Maggie has been crying for most of the evening. We were able to get her to bed a bit early tonight and hope maybe this will last the night. You never know what the nights/days might bring when on steroids.

It appears that it's going to be a long week. Please pray for Maggie-- that the side effects of steroids will not be bad.

No reprieve

We saw some progress in Maggie's stool within the first few days of TPN. I knew it was good when I wasn't waking up multiple times throughout the night to change her dirty diaper. However, yesterday evening took a turn for the worst and we ended up changing 15 diapers overnight. I was so mad, frustrated, and ticked at the world. This should not be happening, not on TPN anyway. The only thing we can think is that Maggie the oral Methotrexate Maggie got on Friday might have created this diarrhea. Unfortunately it hasn't let up today either. We will see what the night brings.

Please pray for us especially this week as Maggie has a spinal tomorrow and begins steroids. They will check Maggie's spinal fluid to make sure there isn't any cancer cells. Please pray that her fluid is clear and that she remains in remission. So often this diarrhea problem clouds the real reason why we are here and that is to cure Maggie of cancer. Pray also that Maggie will not have bad side effects to the steroids or Vincristine. Pray for a good week.

TPN

We started TPN last night and within an hour or more, Maggie was acting like a different person. I'm sure that it wasn't because of the TPN (it can't work that fast?), but something caused her to become happy and playful. It has continued yet today and I might even say she's been a bit ornery, which is so nice to see.

Andy had mentioned Maggie's thumbs and hands acting funny. My mind after seeing this began racing to all the places it shouldn't. However, yesterday after doing a blood test, they found that Maggie's calcium level was very low. We read that low calcium can create numbness and tingling in your hands and feet. So, we think this might have been the reason why she was acting this way. Thankfully in the evening her thumbs were back to normal, though today she is still a little low, but not dangerously low.

So, now, for the next 3-4 weeks, we will be carrying a bag with us wherever we go. To begin with, Maggie will be hooked up to 24 hour "feeds." By next week they will try to bring it down to 18 and then eventually only overnight. They will measure Maggie's weight, height, and her pre-albumin (a measurement of protein and your body's overall nutrition). When her pre-albumin has been above 20 for sometime (it is currently at 17) they will take her off.

I don't see this as a solution, but only a temporary treatment to bring her nutrition up. I have a feeling we will be dealing with diarrhea until the end of treatment. We need to just maintain her nutrition and hydration until that time. And though TPN can be harsh on the liver, we think it's the best option for her, as we can already see a difference in her attitude. Now hopefully we'll see Maggie start growing and the diarrhea subside.

Update

Hi everyone. Our energy is low tonight, so our update will be brief. Maggie is going to be put on TPN tomorrow (IV nutrition). We did this in June for 49 days and it plumped Maggie up and improved her diarrhea situation for a brief while. So, this will get her to the point where she'll be nourished better and she should put some weight back on. It is an inconvenience having her port accessed for an extended period, but it is the right thing to do. Dr. Mezoff guessed that she would stay on for 3-4 weeks, although last time it was longer than that.

Our question tonight is whether or not Maggie will be hospitalized for a couple days to get her started and to insure that she is getting a good mix of fluids, vitamins, and lipids. Dr. Mezoff thought that we would, but the Hemonc office sounded as though they may do this through homecare nurse visits.

We're not closer to identifying a cause for the diarrhea. The test results didn't show anything new and Dr. Mezoff is assuming that it is treatment related. We've been told to not bother with the gluten-free diet as Celiac disease has been ruled out several times. So, we'll continue to plan to deal with diarrhea until treatment ends in July. All we know is that it is worse now than it has ever been.(By the way, we are now 2/3 of the way through treatment, 16 months down, 8 more to go).

Our other concerns tonight are that Maggie is acting funny--she seems jumpy and less secure since yesterdays procedure. Also, she seemed to almost hyperventilate today and this evening she hasn't been using her thumbs--she tucks them under her palms and holds her hands awkwardly. We've seen it all now, I guess. We are assuming that it may be due to her new medication, but it would be really nice to see it be resolved soon.

We are all exhausted and drained. Tomorrow is a new day and it will bring some changes. We'll provide more details and explanations as soon as we can.

Worn Out

We survived the Upper GI with a small bowel follow through today. We were up extra early today after having several interruptions during the night for poop clean up. This left us all a bit more tired and Maggie especially tired given the amount of crying she did today.

As far as the procedure is concerned, it was quite difficult on the both of us. It is very hard to not be able to soothe my crying child. And just to clarify, this isn't a mad crying, but a scared crying. Maggie knows the x-ray room all too well, unfortunately, and as soon as we entered the room she started crying. When told she would be drinking chocolate milk (they put nesquik in the barium) she was very excited, but then they made her drink it lying down with a huge machine over top of her. This didn't end up working, for obvious reasons, and she was forced to drink it with a syringe.

The procedure then had us waiting for 30 minutes to an hour at a time before they did the next x-ray. During this time I had to force her to drink the rest of the concoction with a syringe AND get her finger pricked for a lab draw to see what her electrolytes looked like. If someone had a bad day today, it was definitely Maggie. She had over 4 x-rays and we waited 3 hours and 25 minutes before the barium finally finished through the small bowel. They say normally it takes about 1-3 hours. We assumed Maggie would be fast considering how quickly food passes through her body, but nope, like I've said before, nothing is easy with us.

Maggie did very well considering, however, the rest of the day she was much more irritable and jumpy. I have noticed she trusts things much less than before (if you can believe that), she whimpered some in her sleep during her nap, and of course she is just as needy. I am pretty upset by the whole thing; forcing my child to drink something disgusting, forcing her to lay down on her belly while holding her down, forcing her to take medicine that tastes bad, forcing, forcing, forcing. I shouldn't have to do this and she shouldn't have to be going through this. Must I say again, it's not fair.

Our next GI adventure starts tomorrow during her scheduled appointment in Cincinnati. We will see what the plan is-- and there better be a plan. Maggie's diarrhea has gotten increasingly worse. Friday night I was up 8 times changing her diaper, Saturday 6 times, and last night 3 times. I guess you can say it's getting better, but last night's required a whole bedding change. These nightly changes are on top of going 4-8 times during the day. Something has made things worse for her and I'm not exactly sure what. We decided Saturday that maybe we would put it upon ourselves to try a gluten-free diet and see if that creates any change. I've been told it might take some time, which I guess is good since there has been no change.

But I guess on the bright side, Maggie's labs were not horrible today, surprisingly so. They did increase her new medicine a teaspoon because her bi-carb is still low at 18.6 (normal is 20 and above). This medicine however is very bad tasting and Maggie cannot get it down her without almost heaving. There's a lot of it too, 6 teaspoons 3 times a day. That is a lot for a little girl, on top of taking so many other types of medicine throughout the day. Maggie's potassium was 4.1, which was quite a shock given our weekend potty experiences. So, with the labs comes another finger prick on Thursday or Friday to see how she is doing. Another moment for me to force her to sit and endure pain.

On the bright side, we did get to go Trick-or-Treating on Saturday with Maggie's friend Jay. She was very quiet and shy, but she did manage to say "Tri" (for Trick-or-Treat) and "Tan" (for thank you) when we walked up to the houses. I ended up carrying her the whole time, which was quite a workout. My goal next year is to have Maggie walking on her own and to have her dressed in a new costume (which means that she will have gained weight and grown). She was once again a bumblebee, which she liked, but was not all too fond of the hat with antennae.

I will say that I have grown tired of people commenting on how tired she looks. Even after a nap she looks tired. That's what chemotherapy and steroids do to you, they make you look tired. I often feel when people say that, that they are judging me for having Maggie out when she should be at home in bed taking a nap. I just smile and say, "yep," but what I really want to say is, "She has cancer. There's a reason why she's tired." I look forward to the day that she feels good. I also look forward to the day that I don't have to correct people by telling them she's a girl (I guess girls can't have short hair). I know, I shouldn't worry about it, but after awhile, it just gets to me. That's kind of what this disease is doing to me...getting to me.

Disappointment

We had a disappointing day--well actually more like a disappointing couple of weeks. It seems like we can't get ahead, ever. I took Maggie into the hospital today to get her counts checked because she has been having such huge quantities of diarrhea. After getting her finger poked, we waited 45 minutes in the waiting room for the results. The results showed a potassium of 3.6 (fairly good) and a carbon dioxide level of 15.6 (not so good). All of her other hydration numbers looked good but that one. Thus, Maggie had to be accessed and given a bolus of fluids to help bring up the bi-carb number. She was then given another supplement to take orally to try to help maintain her bi-carb.

Some other pieces came out of this visit. I called Cincinnati once again and requested that we be taken off of the enzymes. They don't seem to be helping and if anything they have made her diarrhea worse. Dr. Mezoff then changed Maggie's appointment to an earlier time next week. I'm hoping this indicates his (and our) sense of urgency for the situation.

We are tired of this. All week Maggie has gone to bed only to wake up less than an hour later to diarrhea. The diarrhea than lasts for the next 3+ hours making our nights end around 1:00 am or later. We don't have a moment to ourselves. We are cleaning up poo half the night and all day. It is just getting so very tiring and old. I had great plans to go my parents next week and visit with friends and all of this has been cancelled. Maintenance is supposed to be easier, but it is just as hard, if not harder.

We need an answer, we need a treatment and we need it fast. We cannot continue living like this and watch our child suffer. Please, pray for Maggie.

Upper GI Appt. Set

This morning I called and scheduled Maggie's upper GI with a small and large bowel study. Hopefully this will give some more information for Dr. Mezoff to determine where to go next. The appointment is scheduled for Monday at 8:15 in the morning. Pray that the procedure goes well. Maggie must drink barium and then the procedure will take an hour and a half or more. I don't know how it will work for them to observe her that long, but hopefully she'll do well.

I checked Maggie's weight today and she is down to 21 lbs. 4.5 oz. I think this shows the amount of diarrhea she continues to have. She had 4 episodes today (though the day is not done). It just doesn't seem to be letting up and I have no idea what is causing it's increase or consistency. She hasn't had milk in 2 days, so that can't be it. It is SO frustrating for us.

Please continue to pray for Maggie and her GI issues as well as for complete healing from cancer.

Upper GI

Unfortunately, not much has changed for Maggie and the diarrhea. Her diarrhea has picked up in the last few days or perhaps it never really changed much. Who knows anymore. I had been given the okay to give Maggie milk again and so I did the last couple days. I am wondering if maybe the milk might be increasing the frequency and changing the consistency even though she doesn't have a lactose intolerance. Again, who knows, but we'll withhold what she likes to give her any small amount of change for the better.

Can you tell we're a bit down about all of this? I cannot say enough how hard this has been on Maggie and her body. It's so sad to see her skin drooping on her. It's just not fair at all that she must deal with GI issues on top of cancer. I have learned that life isn't fair, but it doesn't mean that I still don't live by that principle. We need some answers and we especially need a treatment plan THAT WORKS.

With that being said, the nurse from Cinti. Children's contacted me today and said they are going to go ahead and schedule an upper GI with a small bowel study for Maggie. This is what comes next on the list that Dr. Mezoff has created and the last item on the list is another scope. She said they may just have to do another. What a new scope is going to show that the old one didn't I don't know. I'm going to try to schedule this procedure before her next appointment, November 6. I'm not sure they expect to see anything, but again, I guess it'll just rule out one more thing.

Please pray for our little girl. Pray that these GI issues are resolved immediately-- that they find an answer, but more importantly, that they find a successful treatment. And of course, continue to pray for Maggie and for the main reason we started this blog-- that her cancer will go away and never return.

Do the enzymes work?

Unfortunately, I don't think they are going to work for us. Maggie has continued to have diarrhea, with it increasing around bedtime (the reason for Maggie going to bed so late recently). Many of the nurses that I've talked with say that they should work immediately, so if that is the case, they are not our "answer." I asked the GI nurse I am in frequent contact with at Cincinnati Children's about our next steps. It might appear that our next steps are a procedure that involves drinking Barium.

Hopeless is the word that I am feeling. I really thought the enzymes might be our answer, but I guess that was too easy of a solution. Easy is not a word used around this household.

I took Maggie into the clinic today to get her labs drawn again. She received lower numbers on her hydration yesterday so they wanted to keep her accessed while giving her a night off of fluids. We were thinking (and maybe hoping) that the fluids were increasing her diarrhea. Maggie's counts today showed that her hydration (or bi-carb) had risen, however her potassium dropped again (from 3.5 yesterday to 3.1 today). Regardless of this decrease, Dr. French gave the okay for Maggie to be de-accessed. We hope that she will maintain her hydration and we don't need to go back to the hospital on Monday. Another little positive piece is that Maggie's weight has increased back up to its original number- 22 lbs. So it appears she has gained back all the weight she had lost from diarrhea. I don't know if the weight loss was from loss of liquids, but I hope that maybe the weight gain shows that her nutrition is coming around. We'll take weight gain no matter what causes it.

I know that our prayer request becomes quite repetitive, but please pray for Maggie's diarrhea to stop, her body to absorb nutrients and of course the most important, that Maggie's cancer is completely gone forever.

Update

Yesterday was a pretty rough day for us--Andy at work and me and Maggie at home. Maggie continues to have diarrhea, mainly at night when we have tried to put her down. I am getting a little worried that these enzymes just might not work. Maggie wanted to go to sleep last night around 8:30, but before it was all said and done she was asleep with the help of Benedryl at 12:30. It was a long night balancing between her request for hot dogs and green beans and going poo in the potty. Once I did get her down, I was up every hour until 5:00 am changing a dirty diaper. It was very tiring and frustrating that things are not slowing down.

Maggie had her labs drawn yesterday and today, both showing her potassium at 3.4 (it was 2.4 when we left the clinic Monday). In talking to the nurse, as long as her diarrhea slows, tonight will be her last night of fluids. I was hoping that the numbers would be a bit higher, considering she's on fluids, but I guess her body is slow to responding and she is still losing a lot of potassium in her diarrhea.

I noticed yesterday that the steroids still seemed to be affecting Maggie. She was very touchy in that if something didn't go her way, she would immediately start screaming. An example of this was when we decided to go out. It was a beautiful day, mid 60's and so I decided we would go to the Greene, our favorite hang out on nice days. I dressed her like it was winter; winter coat, winter hat and gloves just in case (I had forgotten what the 60's felt like after being so cold lately). When we stepped outside and felt the warmth I took Maggie's hat off and she was very mad. So, she ended up dressed for winter and probably sweating, but she was happy. I guess that's all that matters. So, the day was quite challenging and from the moment I woke up to the time I went to bed I spent 5 minutes by myself, all the while hearing Maggie calling my name. It was a long day and one that didn't get any relief, even once everyone was asleep.

Maggie is doing better today as she has had less tantrums. I just finally got her to take a nap by herself, something that hasn't been done since the Sunday before last. I am hoping the steroids will rid her system soon as I think they have also caused all of this diarrhea, behavior changes, and sleep changes. It will be nice when Andy and I can sit down together again for a few moments to just relax while our baby is sleeping. You need some downtime every now again, right?

Please pray that these enzymes will be effective and that they will stop Maggie's diarrhea and that she will start to put on some weight. I weighed her today at the clinic and she was up to 21 lbs. 7 oz. with a bit of a wet diaper, so there is improvement, but most likely from fluids. We all just want some relief soon.

Rehydration

We went to the clinic today, as we've done the last 3 months after steroid week, to get Maggie rehydrated with fluids. Maggie's numbers showed that she was dehydrated and that she had potassium loss once again. The horrible part to all of this is that we found that she has lost a pound and a half since last Monday as she is down to 20 lbs. 5 oz. She is almost to her lowest weight before they decided that we needed to change things and began TPN.

As I drove Maggie to the clinic today, I called Cincinnati Children's GI nurse who've I've been in contact with many times over the last week. I told her we needed to become more aggressive as the Imodium is not doing the trick. After lots of back and forth conversations today, Dr. Mezoff decided to try the pancreatic enzymes. I also found that one of her lab results on her stool sample showed that she was in the moderately low level of absorption of Elastase. So, with this in mind, they hope that perhaps the enzymes will help her body absorb better and for me, I feel like this is the last viable option. If the enzymes don't work, I don't know what will. Please pray that the enzymes will be the solution to this 9-month problem.

We had Dr. Dole today, another oncologist at Dayton Children's, versus our primary doctor, Dr. French. I won't share my feelings about Dr. Dole, but to say that he goes about treating patients and discussing with parents much differently than Dr. French. With that, Dr. Dole did things a bit differently in that after they gave Maggie a 2 hour bolus of potassium, they rechecked her levels (something they haven't done the last 2 times). After rechecking her levels they found that they dropped rather than raised. Maggie came in with a potassium level of 2.7 (normal 3.7 and above) and after receiving fluids had a level of 2.2. They rechecked it and it came back at 2.4. Dr. Dole came in and told me that they were going to keep Maggie overnight because her levels were critically low. To Andy's later chagrin, I talked Dr. Dole out of keeping her overnight, even though he was uncomfortable doing so. We were being sent home on IV fluids overnight for 3 days, and I have witnessed Maggie do this 3 times now, always to see her levels rise the next day. Along with that, Maggie has been in a very good mood, talking away and not even being a bit crabby with no nap today. So hopefully things will continue the way they have in the past and Maggie's levels will rise by tomorrow.

The plan is that Maggie will be accessed until at least Thursday, receiving IV fluids overnight for 12 hours. Home care will come out daily to draw labs to see what her levels look like. As long as things go well, she'll be off fluids then. This is a new protocol for us, as in the past we have gone home de-accessed and Maggie has done fine. But I think they are doing this per request of Dr. Mezoff (he had wanted Maggie on fluids throughout all of her steroid week, which Dr. French wanted to wait and see if Maggie would hold her own). The other main change will be those pancreatic enzymes. I am told that they work pretty quickly and we should see a change within 3-4 days to a week. Again, please pray that they work because if not, I don't know what will happen next and Maggie cannot continue this way. The poor girl is skin and bones with a protruding belly. It's just not fair to her at all.

Please pray for Maggie in these coming days as she rehydrates and the enzymes take effect. Let this be the healing answer to our countless prayers.

Yep, diarrhea again

Just a quick update to share that Maggie's diarrhea has again become pretty bad. She had 3 pretty wet ones yesterday and then we were up much of the night changing her diaper-- we think about 7 or more times. Today she has had quite a few to the point that we are again starting to worry. This afternoon she had several episodes in a row while laying on the floor. It was just an enormous amount and after talking her into going on the potty to finish up, she had a good cup or more of straight liquid. On the bright side, she did go on the potty, was pretty proud of herself, and got 2 stickers out of it.

So, we are going to make the call to the clinic tomorrow morning requesting a visit to very possibly rehydrate her electrolytes. We are getting pretty sick and tired of this, not just dealing with so many messes and loss of sleep, but looking at Maggie's frail skinny body and distended belly. We'd like to take a picture of her to show you what this diarrhea has done to her, but I'm afraid it might be too graphic.

I am going to put another call into Dr. Mezoff, her GI specialist, to see if there is any way possible that we can move forward with another type of treatment because the Imodium is just not doing it. It's a very sad sight down here right now and we are feeling pretty bummed and hopeless. Please pray for Maggie that her diarrhea will STOP! and that her weight and overall nutrition will increase.

Steroid week

Maggie finished her steroids yesterday evening and so we are hopefully on the road to recovery. This week was much better than last month. Maggie still had her effects of the steroids, but we didn't see the Vincristine side effects, which we were happy about. However, a little part of me wonders if because they reduced the dose this month, if it still did the job on any cancer cells remaining in her body. I pray it did.

Maggie's sleep of course was affected--no naps in bed, but being held. She was able to go down at night for bed, but it took longer to do so. Steroids seems to make her more lethargic, sleepy, and so she layed around a lot on me. Last night and today she seems to be much louder vocally, to the point where you'd think she was a bit intoxicated. It's almost a bit funny and reminds both of us of our nephew when he doesn't get his nap. Regardless, I'm just happy she has continued to talk. Listening to her talk is so wonderful and we really missed it for the 3 days that she stopped last month.

While we are finished with steroids, we have several days before we will see our old Maggie return. She got sick in a restaurant today and her diarrhea has again picked up, so we definitely are not out of the woods yet. We pray though that these effects will go away immediately and Maggie will be on the mend.

I am posting the last of the pictures that were taken on Maggie's birthday. Enjoy!

Playing (or rather eating crackers) with cousin Brendan on Maggie's new princess table.

Our birthday supper at Steak and Shake. Maggie enjoyed the cottage cheese and milkshake (a rare treat since being told she is no longer allowed to have milk).

"Hey you..."

Physical Therapy

We made some leaps and bounds today during physical therapy. Maggie didn't cry! Or at least waited to cry until the very end of therapy (I think she got tired of walking and playing). This is quite remarkable as we have been in physical therapy since June and Maggie has cried at her weekly visits the entire time. I am hoping this might be a turning point in her therapy and better yet, her walking.

When we pulled into the hospital this morning I told Maggie we were going to see Nancy, her physical therapist. She responded, "walk" because of course that is what we do in PT, practice walking. I then asked her if she was going to play and she responded, "balls." I believe that Maggie is a great observer. She won't speak with people she doesn't know, but instead takes everything in to be able to "talk" about it later. She also has a very good memory as she tells us about experiences out of the blue after seeing something that jogs her memory.

So, when we came into the physical therapy room Maggie said she was going to walk. She also told Nancy that she was two (she is so happy to say that). This is an incredible step in that Maggie is speaking to someone else that is not her family member. I tried to get her to talk to Detch, aka Dr. French, the other day and she didn't, but today she was very talkative. Nancy was quite surprised and impressed.

Maggie used the walker to pick out a basket of balls to then throw into a basketball hoop. She did all of this willingly and in case you have forgotten, on steroids! I was so happy that I couldn't help but continue smiling. It has been so difficult for me to take Maggie to PT and listen to her scream the entire time. I have told Andy that since I am responsible for taking her by myself now, I was going to cancel PT. We are both miserable for the 30 minutes of play time, but today, it was a nice surprise.

I think this shows that Maggie is indeed feeling better (or has been feeling better) and because of that she is much more willing to play and walk. At home she has been again cruising along the couch and has even managed to hold onto the wall and my hand to continue walking after the couch has ended. She will tell others that she has "walk, couch" so she is obviously very proud of her accomplishment. Though we have a long road ahead of us before she will begin walking, we are very happy for the interest she has shown. I think that is our biggest obstacle (along with strength, but hopefully GI will be able to help us with that).

Please continue to pray for Maggie as she is half way done with her steroids. She is doing pretty well so far and I just hope it continues. Last month, Thursday through Saturday were our very tough times. Please also pray that this week will not knock Maggie back in her increased interest of walking and development.

Clinic Visit

We visited the clinic yesterday for Maggie's monthly Vincristine, Pentamidine (anti-pneumonia infusion) & IVIG. We were saddened to see Maggie's weight has continued to drop, even though she eats constantly throughout the day. She was down to 22 pounds-- a 5 ounce drop from 3 weeks ago when she was dehydrated.

Maggie did really well with all of her infusions. We had a picnic set up on the floor where she ate over 10 packets of butter. We continued to have the nurses call down to the cafeteria to bring more up as we ran out. She ate a big bake potato with the butter and when that was finished I spread butter on crackers.

As we came into the clinic yesterday, I told Maggie that we were going to see Dr. French. She is now saying his name and recognizes him. She calls him "Detch." I asked her if she was going to tell him how old she was and she of course said "2." She was all prepared and even when walking by him whispered his name, but as soon as he step in our room, she was mute. No smile, no words, nothing. She kept her eye on him, even at the corner of her eye to make sure he was still there. She is so shy when it comes to other people. She really can talk and does so up a storm, but nobody would know.

Maggie is a very observant little one and like I said, talks about what happens after the fact. So, when she came home and saw her Daddy, she told him about Detch. She pointed and said belly (he always listens and feels her distended belly). She pointed and said teeth (as he looks in her mouth with a flash light), and she pointed to her ears and said "all done." She says "all done" when she doesn't want you doing something.

Anyway, after discussing with Dr. French Maggie's side effects from last month, he agreed to cut Maggie's Vincristine dose in half to hopefully stop some of the toxicity that she faced (the loss of fine motor being the big one). He decided against putting Maggie on maintenance fluids this week (a suggestion from her GI doctor, Dr. Mezoff), and told me if her diarrhea worsens during the week to come back in and he will hook her up. After talking with Dr. Mezoff's nurse about the increased Imodium not changing her diarrhea or stool patterns, they decided today to up her dose yet again to 20 milligrams versus 15. It appears he wants to try to combat the diarrhea with just the Imodium. We will see. I am not a believer yet.

So, that was our visit in a nut shell. They are continuing to do tests of Maggie's stool and her blood to look for bacteria or viruses (all of which have come back negative thus far), absorption, celiac, and food allergies. It is my bet, along with what Dr. French believes, that Maggie has an absorption issue. What the cause is, nobody knows (and nobody will diagnose it as of yet), but I don't really care the cause. Just give us a way to fix it so that Maggie can begin to grow and develop like any other little child and fight this disease.

Please pray for Maggie especially this week during steroid week. We are 2 days down, 3 to go. She has done pretty well so far, but we don't normally see a big change until Wednesday evening or Thursday. Please pray that she will have minimal side effects, that her diarrhea will not worsen to the point that she has to be hooked up to fluids, and that the drugs that she is taking will do the job-- kill the cancer and stop the diarrhea.

How old are you Maggie? Two...

These series of pictures were of Maggie as I asked her how old she was. She responded (with a smile) 2!

Showing her cow to the camera.

And her horse... Might I add, ever since we were at my cousin's wedding back home, she always says "horse...poop." She got a chance to see some on the road and it made a lasting impression. She says it was "big" and there were "two" horses. It is just too cute and I laugh every time.

Maggie's Present

We were a bit unconventional when picking Maggie's present out for her birthday. We took her to the toy store and had her choose what she wanted. She loves animals so much so I thought she would like the barn with animals and sure enough, she was in agreement.

On her birthday, when I asked her if she wanted to open her present, she got very excited and shook her head while saying "ya." They learn so young how exciting it is to get presents. In these next set of pictures, hopefully you will see the excitement on her face. I didn't add one that we took, but it was of her almost crying in desperation as I was too slow trying to get the packaging off so that she could play with it.

We are so happy that she is beginning to play again. It proves that she is feeling so much better and that perhaps we are providing her with more interesting/engaging toys.

Trying to open up her present. The bag was almost as big as Maggie.

A farm!

Checking out her animals.

More Birthday Party Pictures

Maggie thought the box was so prettily wrapped that she didn't want to open what was inside. A cow was a part of her new Magnadoodle. She loves farm animals! Maggie playing with her cousin Ian.