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.