Happy Birthday Maggie!

It's official. Maggie is 2 years old and she is proud of it. When asked how old she is, she continues to say 2 with a smile. A smile--rare, but beautiful.

We had a very good day.My parents and Maggie's cousin Brendan came down today to spend the day with her. Brendan is very good with Maggie (he's 4 years old). He's patient, talks with her, includes her, and acts silly to make her laugh. We need him around more often to get her to smile.

I know Andy posted last night and said as much, but we see each birthday as a milestone that most take for granted. We don't know what next year will bring, let alone next week, but we celebrate each milestone with Maggie because we don't know the future. We didn't know if we'd be able to celebrate her 2nd birthday, but here we are. And I pray that we are here with her again for her 3rd, 4th, 10th, 20th, 30th, etc. We love her so much and want to spend the rest of our living life with her here on earth. I pray we get that opportunity.

I have many pictures from Maggie's birthday party on Saturday and some from tonight that I'd like to share. She is a beautiful little girl and we are enjoying this time with her so much. We know that when she starts feeling better and more like herself, it means the beginning of steroids is near. I can't even imagine what our Maggie is like with no medicine in her. We have read that once kids are off of chemo, they are a different person entirely. We see glimpses of that every now and again, but I can't wait for the day when we have the Maggie that God created her to be-- happy, full of energy, life and especially smiles!

Happy birthday beautiful girl. We love you so much and wish you many, many more happy birthdays. Thank you all for your birthday wishes, gifts, and prayers.

Maggie helped me get our lunch ready for the party. She would sneak bites of cold chicken as I stirred. Who said all cooking had to be done on the counter-- the floor works just as well.

Maggie with her cousins Stella and Mira.

A group picture with my Grandpa and Grandma Arter.

Maggie opted out of blowing the candles. I guess that means we both get to make wishes, right?

Opening presents-- Much more fun for Maggie than it was last year.

3 updates

We have a few updates tonight.

First, Maggie was seen by a new GI doctor at Cincinnati Children's yesterday. Overall, it was a promising visit. First of all, it was encouraging in that the doctor spent over an hour with Maggie and Whitney getting information and providing some insight. That's amazing, and we're grateful. He has a few new ideas to try and has already ordered some more tests. He wants to avoid more scope procedures (whew!) and isn't in favor of bowel rest (i.e. starvation). That's good. Over the last number of weeks Maggie has eaten almost non-stop and her weight keeps on coming back low. So we seem to have an absorption problem and we will see in time how a new approach might help. In the meantime, he is trying to manage the diarrhea more aggressively than ever, so that could help, too.

Next, tomorrow (Thursday, October 8) is Maggie's 2nd birthday. We are so proud of her and blessed to have reached this day. Again, when she was first diagnosed, we felt that 3+ months would be an eternity just to get to her first birthday (we had no guarantee that she'd get that far). We plan to celebrate quietly at home as her party was this past weekend. Whitney will likely share some pictures and stories from that time in the coming days. Maggie says (in her cute, shy, quiet voice) "two" when we ask her how old she'll be tomorrow. She seems proud as well, although she doesn't understand what it all really means. So, tomorrow will be a joyous, proud, and hopeful day.

Lastly, Maggie has been acting beautifully the last few days. She has played with her toys, talked quite a bit (she repeats us a lot and has been saying new words every time we turn around), and even has been flashing her million dollar smile for us. Tonight she said "no" to me (like she sometimes will do if she's in the wrong mood) but this time she had a sly grin on her face while she said it. Joy has been robbed from her for long, long stretches of time. But tonight has been a true delight. Early in maintenance Maggie would feel poorly until about 2 days before the next round would start. Lately, she hasn't recovered at all before she starts the next cycle. This time, we have about a week of good times and that is such a nice surprise. Monday we start it all again with chemo and steroids.

Light the Night update

I'm sorry it has taken us so long to update the blog. We have had a busy week so hopefully in the next couple days I can post some of the things that we've done. But for now, I will share about one of our experiences--Light the Night.

First off, I want to thank all of you for your support- those that donated, prayed for us, or even walked with us in spirit or with us at the event. We had walking with us at the event my parents, Andy's parents, and friends Gwen Ernst, Paul & Jessica Minor and their little boy Jay (who Maggie continues to talk about). We were very blessed to have all of them there.

We had never attended anything like this before, so it was quite an emotional experience. Some of those who spoke were people we had met in the hospital during Maggie's inpatient stays. Their words were touching and brought tears to our eyes. I have learned that when going through this very difficult experience it's easy to become like family to those that are also dealing with similar situations. Even if we have only met a handful of times, the support from fellow families is amazing and also comforting.

So, we were happy to attend the Light the Night event to support those who are battling, have battled, or lost the battle to leukemia or lymphoma. We pray that we might continue to attend this event the rest of our lives with Maggie carrying a white balloon, that is designated as a survivor, walking right beside us (though I did enjoy carrying her the 2 mile walk).

If I can add a prayer request unrelated to this post, please pray for my grandpa who received unsettling news, as well as my grandma who has also been going through the process of determining some health issues. Young or old, the word cancer is horrifying and nobody should have to deal with it. We need to find a cure.

A bit camera shy...

Maggie has found that she likes hot dogs (and ketchup)!

Me & Maggie with Jessica and Jay

Paul, Andy's parents & my Dad

Sacrifices

I learned about two years ago that being a parent means taking sacrifices. Sacrifices of time, sleep, physical appearance, food (as I have learned that Maggie eats first and I get the scraps), etc. But given the situation that we have been in the last 15 months, we have learned that we must also sacrifice our careers and goals. Andy did this last year by taking a year off of school to be home with Maggie while I worked. Yesterday, I decided it was my turn.

My job switched employers in July and I was awaiting for the job to begin once again. Originally, Andy and I thought that I would no longer work because of the job flexibility being lost, however, conveniently enough, they decided to contract the work out where I would be able to have my office at home. With this promise, we decided that I would work evenings and weekends and then have someone watch Maggie occasionally when I had to work during the day.

All was in place until yesterday the employer changed their mind. They wanted me sitting in an office for 8 hours a day. Anyone who knows our situation and dealing with a child with cancer knows this isn't feasibly possible. A child with cancer has a compromised immune system where putting them in child care would mean an automatic ticket to several days in the hospital dealing with fevers. Maggie also has not ever been around kids so regardless of her immune system, her body isn't used to dealing with other germs. On top of this, there are doctor visits, physical therapy sessions, and the much dreaded steroid week. These are all situations I see it necessary for me (or one of us) to be present.

So for this reason, Andy and I have decided that Maggie is much more important than financial security and we are willing to take the leap of faith (though I think we've been taking too many leaps lately and I'm getting a bit tired of it), to do what we think is right for our family. My would-have-been-employer told me last night after I had tried to negotiate the position and was declined, that she believes in miracles and if in 24 hours I could find child care for Maggie (which wasn't our main issue), that I should give her a call. I hope there are miracles, but not for the sake of my job, there are much bigger things to wish miracles upon, and she's sitting right beside me.

Cincinnati Children's

We got word on Friday that the wonderful nurses at Dayton Children's have pushed to get Maggie's GI appointment changed from October 30 to October 6. We are very happy and grateful for them doing this and hope that with this appointment we will get some answers and a treatment plan.

Maggie has been doing pretty well. She is still having her episodes, but they are not nearly as bad as they were last week. I think the potassium boost and being finished with steroids helped the situation.

In general, I'm just so tired of dealing with these issues. I would like to move on from this life of worry and enjoy every moment rather than wonder/worry about Maggie's conditions and whether or not she will be with us the rest of our life. I feel like someone has paused our life for these 2 years (and more) and we can't move on. I'm tired-- we're tired. We just want our baby girl to be healthy.

I want to thank Westminster Presbyterian Church in Dayton. We got a surprise call from one of their ministers, Kay Davis-Dudding, last week wanting to support us. We had been in contact with Kay while spending much of the summer in the hospital last year, but once we got home, we lost contact. Since Maggie got sick, we haven't been able to go to church often due to her counts and treatment (now that we are in maintenance, we do not attend church during steroid week for obvious reasons). Going to church has become a special occasion. Anyways, Kay called and asked if the deacons could bring us a meal once a week and we received our first one yesterday. It was so wonderful and we are so grateful to them for this ministry.

Being in Dayton without any family nearby, we often feel alone, but this call was much needed as we are dealing with so many transitions and complications with Maggie's disease. It gives us the strength to continue one more day. Thank you Kay for initiating this wonderful ministry.

Please pray for a little baby named Lincoln, who we met while in the hospital. Lincoln was diagnosed when he was about 3 months old with ALL and has just relapsed-- he is about 9 months. Again, this disease is absolutely relentless. There is no reason why children should have to go through this.

Light the Night

We have been talking for a long time about participating in the Leukemia and Lymphoma Societies "Light the Night"event in Kettering. Last year we heard about it, but we were in the hospital more than we were home a year ago, so we did not participate. However, this year, we would like to walk at this event for Maggie.

Though Maggie is not walking, we will be carrying her as we walk-- as we've been carrying her through this disease the last year plus. If you would like to walk with us or would like to donate to this event on behalf of Maggie, you can go to her team webpage: http://pages.lightthenight.org/soh/Dayton09/Maggie

We hope we will not be walking alone, though we know that we are also doing this last minute. But, guess that has been our motto this last year-- plan at the last minute because we never know what might come up.

As for Maggie, she is doing a bit better. This afternoon and evening she was very fussy and seemed like something was bothering her when we offered her food. She also was quite tired today as she took a nap over 2 hours (with a poop break in-between). Tonight she also went to bed early. Hopefully this is her body catching up on sleep that was missed last week and repairing itself from the harsh toxins that entered her body. Please continue to pray for Maggie and check out her site if you get a chance.

Relief

I took Maggie back into the hospital this morning for a scheduled lab draw to check her electrolytes. With this lab came a new finger poke, which Maggie was not too pleased with; however, the pink band-aid she received on her finger has been a hit. She has "talked"about it most of the day and held her finger up to admire her "pink" band-aid. What can I say, band-aids and stickers tend to heal all wounds. I am so glad that this does the trick as it reminds me she does have some normal 2 year old traits.

The labs measured her potassium and carbon dioxide levels, two levels that determine hydration. Her potassium went from 2.1 yesterday to 3.5 today-- a big jump and just below the normal range. Her CO2 level went from 10.9 to 18-- another level just shy of being within the normal range. So, Dr. French did not need to see Maggie further today for more hydration methods. Though she had about 6 diarrhea stools last night, her body managed to maintain her levels. After a stool when Maggie woke up this morning, we have not seen one since, which is a rarity in this house.

This evening Andy and I were able to get away and spend some time together. We were able to "escape" our life by watching a movie tonight on the big screen. The last time Andy and I did something alone together was in November of last year. Since Maggie has been born, we have had 3 "date" nights. We know that nurturing our relationship is very important, but with all that has been going on, we just have not had time to do so. We have read in books that often marriages struggle to survive when a child is diagnosed with cancer and I can totally understand why. The continual stress of a sick child wears on everyone involved, and for Andy and I, the last 7 months have been particularly hard on us as we have had to deal with Maggie's cancer AND diarrhea. So, it was much appreciated that we spent an evening together.

The last day and a half my parents have come to "rescue" us from the day-to-day stress. It is so hard to keep up with regular household chores, especially during steroid week. My parents were able to take a couple of days to come down, clean up the house, fix up things that had been neglected, and give us an opportunity to have a "date" night. In short, I think they gave us some of our sanity back. We are very grateful for their help and all the support that we receive from our families.

Please continue to pray for Maggie, that we can find a resolution to this diarrhea problem, that the side effects to the chemo and steroids will disappear, that we can have some "normalcy," and most importantly the cancer will never return.