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.

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