2 years!

Today is a day that we've looked forward to for a long, long time. Initially, we thought today would mark the end of Maggie's treatment. Maggie's last chemo, as it turned out, was 4 months early because of the seriousness of her illness this spring.

However, we are still happy to be two years into our journey. June 30, 2008 was the day that we were introduced to our leukemia nightmare.

Yes, we've made it to our two-year crapiversary.

Here are few images that demonstrate how far Maggie has come.

All is well

We continue to have very good days in the Bixler household. Maggie has been walking all over the house using toys with wheels. She is very interested in walking, even up and down steps, which can be quite difficult. We can tell she is still building up her strength and isn't quite ready to venture on her own yet, however her physical therapist has a goal set for her to walk a couple of steps by herself and stand on her own. She can stand on her own if distracted, but we are still building up confidence.

In the last few weeks, we have also hit a momentous time for us. Maggie doesn't have diarrhea any more! I am sure over half of our blog entries have been about diarrhea, but we are done posting about that. It was such a glorious day that we actually took a picture of her poo. I wanted to post it on here, but was advised that people probably didn't want to look at that. Maggie has also been going on the big, big girl potty some. It is not consistent and we normally start in our diaper and finish on the potty. It is quite funny to listen to her sit on the potty and say, "push, push." She got some Dora underwear at the store. They have not been introduced to her bottom yet, as she is not quite ready, but she is very happy to show everyone her new prize.

Maggie is also beginning to tell jokes. Last week we were sitting at the supper table and she turned to me and pointed to my chest and said, "Milk, in there? No...," and started laughing with her nose and eyes scrunched and her shoulders bouncing up and down as she laughed. This phrase continued for the next 5 minutes as she enjoyed making us both laugh.

We are finally beginning to see Maggie's personality. Though we don't know entirely what it will be, she has some bossy tendencies. She will tell us to do things and end her command by saying, "kay" (as in okay?). She has also learned the word "don't" and uses that quite often. I looked at Maggie in her car seat the other day and she told me, "Don't look me, kay?" You can't help but smile when listening to her. For so long we didn't hear much of anything from her mouth and now she is a chatterbox. It is very refreshing.

Finally, we had our monthly clinic visit yesterday. For both Andy and me, it seems like the days leading up to the appointment we are on edge. The worry of relapse is always on the forefront of our minds. When Maggie gets a new bump, rash, or even scratch the first thing I think of is always a relapse. I asked Dr. French when the worry will go away. Unfortunately his response was, never.

So Maggie received her prophylactic infusion for pneumonia yesterday and her counts checked. Thankfully, everything came back wonderful and we were able to breathe once again. I compare the days prior to Maggie's blood work as feeling like the end of times and when we receive good counts, it feels like Christmas. We can't help but celebrate each month when we get the good news that she is still on track.

We are very thankful that God has given us these "normal" days with Maggie. We continue to hear from others that she is a miracle, and we do believe that. God had many opportunities to take Maggie, and He didn't. We believe that He has big plans in store for her. We look forward to watching Him use Maggie as His Ambassador in the years to come.

Much of what Maggie does throughout the day is play downstairs. She walks all over the place and pushes her little toys. She's all smiles.

Maggie loves to dance with her Daddy. She loves to listen to music, and I find her tapping her foot to it. I look forward to the day that Maggie and her Daddy can do the father/daughter dance at her wedding. What a celebration that will be!

We got Maggie some pajamas, one with a tutu. She now has 2 tutus--this one and one that Aunt Morgan got her for her 1st birthday. She just finally put the purple tutu from her birthday on last week. I think this signifies how good she feels. The last 2 years have been pretty rough on her. She is just finally beginning to "act" like a little girl.

Maggie wanted to have her picture taken in the bathtub. She still loves her baths and will spend hours splashing and filling up her cups of water. We even spend so much time in here that we eat our snacks while playing in the tub.

Baby Lincoln

During the last year, we have asked for prayers for a special little one, Lincoln, who was also diagnosed with Infant ALL at the age of almost 3 months. Lincoln was in ICU with Maggie in Dayton and we had spent some time in the hospital with him during Maggie's inpatient stays for dehydration. While in ICU, Lincoln's mom, Diana, became a person I would retreat to in the evenings to talk with about our situations. While Maggie was on the oscillator, Lincoln's room felt like a meditation room to me because of its quiet and peacefulness. We have felt a connection to the Hammett family given that we have had similar situations with our children.

It is with sadness that I share Lincoln's passing on to heaven yesterday morning. He was a fighter--one of the strongest little boys I've ever met. He defied much of the doctors opinions. For the last several months, Lincoln has had a white count greater than 200,000 (normal white count is 6,000-11,000). Under most situations, a person does not survive long periods with cancer invading the body, but this little boy did...and for many months. He was an amazing little boy.

Back when I was in high school, I experienced the first real "death" that I could comprehend (if death is able to be comprehended). A person my brothers went to college with died in a working accident. That was the first time I really had questions for God. I really wanted to know why God takes wonderful, young people early in their life. Why does God allow accidents to happen? Why does he allow people full of life and great potential to die?

This question has not been answered, but instead has only gotten more complicated in the past 2 years. Why does God let little children get cancer? I understand adults who have made poor decisions in life can end up paying for their decisions through cancer, but children? Innocent, full of life, full of potential children? And babies? Come on God, where's your heart? I've watched children, my own child, suffer and experience things that nobody should experience, especially a child. I have watched the innocence of children be stripped away from them. And now I watch babies pass away after fighting so hard to live. It doesn't make any sense to me and though I know life isn't fair, this really isn't fair at all. No child should have to go through something like this and no child should lose their life so early.

Please pray for the Hammett family. Pray for every family that has a child with cancer who has fought their fight and has entered heaven as an angel. Pray for every child who has been diagnosed with cancer.

We love you baby Lincoln.

http://www.caringbridge.org/visit/lincoln

"Normal"

We have enjoyed living as "normal" a life as we can. We are enjoying the summer by doing summer-like things. Since it is recommended that we keep Maggie away from crowds that are indoors, we have visited with our family and friends outside as much as possible. Thank goodness that it is summer or else we might be feeling like caged animals.

Last weekend Maggie enjoyed helping us pick strawberries at a strawberry farm. We then made 2 flats of strawberry jam, a strawberry-rhubarb pie, strawberry shortcake, strawberry soup (Maggie enjoyed this one as she is a fan of soups), and had lots and lots of strawberries. Andy may just be tired of strawberries now.

Last Monday we all got to see a picture of our new addition coming in October. I had my 20 week ultrasound and Maggie and Andy were there to watch the baby. Maggie had a hard time at first with me laying down on the bed and having the procedure done. She is very sensitive to this as she also has had many ultrasounds (more than me). We decided not to find out the sex this time around so we will all be surprised. The baby was also measuring at 4 days larger than my due date. So it looks like there's a possibility we could have another big one (Maggie was 10 lbs.).

Last week Maggie and I got to go to Columbus to shop at the outdoor mall with the ladies of my family. Maggie and I didn't do any shopping, but we did enjoy blowing bubbles outside, walking in the stroller, and eating some good food.

This weekend we enjoyed celebrating the birthdays of Maggie's cousins, Ian and Mira. The pictures below are of this event. It's nice to finally feel like we can do things that other people don't even think twice about. Often we feel quite isolated, in part because we have done that to ourselves to protect Maggie. So it is very nice to be able to see our family on these types of occasions.

I'll be honest and say that worry doesn't sometimes cross my mind. With every little bump, bruise, rash (and there have been many given Maggie's crawling and being outside)... a feeling of worry comes, but thankfully Andy has been able to erase it quickly. I just wonder how long this worry will last with the littlest of things. Like I said in previous posts, it would be nice to worry about the normal things in life that are associated with children.

Maggie is beginning to put weight on her leg once again. She has done some walking, cruising and standing. I try to slow her down as I don't want her to overdo it like the last time. She has been prescribed over-the-counter vitamin D and calcium chewies. She has to take 5 a day. I laughed at the dietitian when she said that as sometimes I'm happy if Maggie takes 5 bites of something in a day.

Maggie tube-feeds have decreased to 18 hours, so she is given 6 hours off. It is so nice to have Maggie free to play and not chasing her from behind with the bag because it is "tight." We go to both doctors (GI and oncologist) tomorrow to check her electrolytes and weight, as well as follow-up with the changes that have been made to Maggie's feeds so far. I look forward to the day that we don't have a tube in the nose and Maggie is eating on her own.

Maggie with her cousins, Ian, Mira & Stella.

Maggie is still in love with the sand box (as is Ian). For some of the party, Maggie was over at the sandbox playing by herself. Though she might have enjoyed sitting in the sand like Ian, this mommy isn't quite ready for the mess.

Uncle Jeff was brave enough to hold the pinata for all the children to hit. Maggie was quite timid to hit it, but with Daddy's help she participated with the rest of them. Once it was on the ground, she used the stick to beat it like a drum.

Keep Smiling

Just a brief update after visiting the clinic today. First off, let me say that Andy and I felt like today might be the turning point in our life, given that we weren't sure what Dr. French would say about the bump on Maggie's bicep. We were worried all week long, sometimes to the point where we both felt sick to our stomach. Our innocence has been lost since Maggie was diagnosed with cancer and we are all too aware of the scariness when it comes to cancer and relapse.

So, I took Maggie into the clinic and Dr. French and the nurses agreed that what Maggie has on her arm is something within the vein, quite possibly from all the pokes she has received, including a picc line. Maggie also had her counts drawn and they are all very good. This is a relief as he said most often a person would see relapse in the counts. We pray that Maggie's cancer is gone forever and her counts show this each and every month. We are very grateful to God for being faithful. Though we absolutely hate these types of scares, they do remind us that God is near. Thank you all for your prayers as well.

Maggie continues to improve in her leg strength. We are noticing that she is beginning to pull herself up (sometimes with only one leg). She crawled up several stairs tonight, not bearing weight on her right leg, but this is a step in the right direction. The goal now is to give her time to heal while also allowing her to put weight on the leg to give it strength.

Dr. French also took away Maggie's last dose of lasix. This is a big step in the right direction as well. It shows that her body is healing enough to get rid of the fluids versus having medicine do it for her. This also means that we get a break next week and don't have to go to the clinic. Being on lasix has meant weekly electrolyte and weight checks to make sure she is doing okay.

They are also slowly weaning Maggie's formula feeds down. She currently has a 4 hour window when she is not receiving formula and she can go "free." If she is hooked up to her feeds, we normally have to follow her around so as not to allow her "tubie" to get tight and end up coming out (as this has unfortunately happened once before). It gives us all a break. Unfortunately she is not taking much more by mouth, but Dr. French is not surprised. It is going to take time, but hopefully the day will come when Maggie is self-sufficient (and hopefully that day comes soon).

I guess this post ended up being longer than expected, but one thing you can expect, as I alluded to in the last post, is smiling, happy pictures. We have been assured that Maggie is still on the right track and we are relieved and very happy. We can again breathe and enjoy our "normal" life. We look forward to sharing more of our happy little girl. She is such a joy in our lives and we hope she might bring some joy to you as well.

Updates

We have continued to enjoy our time at home. Maggie continues to be a happy little girl wanting to go outside whenever possible. Unfortunately, due to the medicine she is on, she is hyper-sensitive to the sun and burns very easily. We lost all of our trees in the backyard either to the wind storm a couple of years ago or to cutting them down so we have no shade in the backyard. This makes it very tough to keep her protected.

Maggie's leg continued to heal and she began putting weight on it last week. She would stand and take a couple of steps. We got her a sand/water table on Sunday and she thoroughly enjoyed standing and taking steps back and forth between the two elements. As I was getting her ready to take a bath, she asked to stand at the tub and as she did so, her leg gave out. She cried similarly to the first time she fractured her leg and so we decided she should go back to the doctor on Tuesday. The x-ray yesterday showed that she did indeed fracture her leg within her existing fracture. It also showed that she had a fracture at the top of her tibia as well, as there was new bone growing. They decided not to cast her (again) because her major problem is osteopenia (bone density). In order to correct it, she needs to be able to put weight on it, as this helps build her bone strength. He also suggested adding calcium and vitamin D to her list of medicines. The poor girl is just so brittle it doesn't take much to break a bone.

We also had a bit of a scare that we are trying to deal with currently. On Thursday, Andy found a bump on Maggie's bicep during her bath. We of course both grew sick with worry. We couldn't rest with this over our heads, so I called my wonderful nurse friend who graciously agreed to see Maggie at 9:00 that night. After she talked with the doctors the next day, they currently are not worried about the description. We try to take comfort in that, but given our situation, we can never feel a complete sense of peace. Maggie goes in to see Dr. French tomorrow for her counts, as well as an anti-pneumonia infusion. Please pray that Maggie's counts still look good and that what is on her arm is harmless. Please...

We try to remain strong, but sometimes the worry is too much. It seems as though we can never completely rest feeling good. There always seems to be something that brings us back to our reality. We pray that we are just being over-anxious and worrisome parents. Again, please say an extra prayer for Maggie that she is completely healed of cancer forever.

We thank you for following along with our journey. We pray that our journey consists of only happy pictures from now on. We pray that our days of becoming "normal" parents and worrying about "normal" worries (Maggie running across the road, touching a hot flame, etc.) will soon be here. We are tired of what we have dealt with and pray daily for complete healing for Maggie. Please continue to pray that with us.

For now, if you look at the next 2 posts, you will see some happy pictures of what we have been doing. Like I said, I hope these pictures will only continue.

Memorial Day Weekend

We spent Memorial day at Alum Creek State Park in Delaware with any family members that could attend. This day, for many was the first time they saw Maggie since she was sleeping in ICU or even Christmas. It was a nice reunion and a beautiful day.

My side of the family-- Maggie's great grandparents, Arter & Lehman along with her cousins. She doesn't look to thrilled to be sitting here. I guess we didn't quite get over our shyness.

We are heading down to the beach to play in the sand and put our toes in the water.

Maggie much preferred playing in the sand or as she called it "dirt." It really did look like dirt after it was combined with the lake water.

After having so much fun playing in the sand at the beach, we decided to get Maggie a sand and water table to play with in our backyard. We didn't have any toys for her to play with outside and being that Maggie loves to go "side," we thought this would be perfect.

Maggie stood up and played for a very long time at the table. Unfortunately, she pushed herself too hard and eventually ended up fracturing her tibia once again. She now resorts to sitting in her new princess chair to play. As she gets stronger again, we will work on her standing and cruising, as she showed us she was motivated to do so.

Fun Times in May

We went to our first Dayton Dragon's game sponsored by Emily's Bead's of Courage. The necklace Maggie is wearing around her neck is one of the many necklaces she has telling her medical "story" through beads.

She saw many people eating and decided she wanted "popcorn" and "pop." Hard to tell a girl "no" when we are just happy to get a bite into her.

"Cheese!"

Maggie LOVES her baths. She gets one nightly and has the best time pouring water, writing with crayons, and listening to the Backyardigan's music in the background.

We had visitors come to our house last week. Maggie (and all of us) got to meet her new cousin, Parker. It only took us about 8 weeks. Maggie had to get her "own chair" out since Parker had his. She enjoyed looking at Parker, but no touching. I think her real joy was to be able to see Aunt Morgan again.