Chicago's Hot Doug's

We went to Hot Doug's first on our trip to Chicago. We went there last year and really enjoyed the exotic hot dogs. This year, we waited almost 2 hours for a hot dog. Maggie did excellent waiting in line outside for that long, especially after not having a nap and waking up very early to drive there.

Though we went to Hot Doug's for the unique hot dogs, the cheese fries were the hit for Maggie.

Peek-a-boo!

A happy little girl. Maggie loves to eat out at restaurants. Too bad our budget doesn't allow.

Columbus Zoo

I am going a bit out of order, but wanted to post pictures of our trip to the Columbus Zoo several weeks ago. Maggie loves animals and the morning we went, we had to wake her up. We told her we were going to the zoo and she jumped up in bed and started naming animals we would see (though we were both a bit disappointed we didn't see giraffes or zebras).

The penguins were a highlight to the zoo trip.

It was a bit challenging to get a picture of the penguins, Andy & Maggie looking at the camera all at once.

Maggie's uncle Steve, aunt Alyssa & Ian came along with us (along with Grandpa & Grandma Bixler). Maggie also was sporting the bandages during that trip with her blister and cast.

The highlight for Maggie was probably riding the carousel.

Grandma Bixler was able to hold Maggie through the aquariums. She was quite the lug to hold though, I'm sure.

How to get Maggie to smile (or at least look at the camera)? Tell her to have her stickers say cheese at the camera.

And one of our most favorite foods this summer is the ice cream cone. It does tend to melt all over her before it all gets into her mouth.

Chicago

Andy finished his internship on Friday and started his post-doc position today at Wright State. We decided for the long weekend (it's the first vacation day he has had in a year) that we would go back to Chicago. We had such a great time last year that we wanted to enjoy the big city feel once again, especially since Chicago has so much to offer in terms of entertainment.

I will be posting pictures, but I wanted to post this video of Maggie at Shedd Aquarium. The excitement she exhibited during the show, as well as throughout our entire vacation, warms our heart. We both continued to think during our trip how 6 months ago we weren't sure we'd ever be able to do anything like this with Maggie ever again. We've come a long way and we're not ever going to stop.

We survived

We had our clinic visit this afternoon as well as Maggie's orthopedic follow-up. I think I was a little too optomistic in my planning the two visits back-to-back, as we ended up not completing our clinic visit before our next appointment. Maggie's CBC allowed our minds to calm for another month as she is still right on track.

Her IGG level (an immune system test) was below where they wanted it, so that ended up being an extra 2 hour plus infusion. This infusion (along with the pharmacy taking over an hour to bring up her Pentamadine) ended up giving us a chauffer (wonderful nurse Sharon) to our orthopedic appointment while Maggie's infusion completed.


With Maggie's immune level being lower than they wanted, it has postponed her port removal. Maggie needs more time to recover her immune system. She may need more IVIG infusions in the future and Dr. French wants to give her several more months of her anti-pneumonia infusion. It is easier to access her port than it is to give an IV, so for that we will wait another couple of months. Dr. French did decide to take Maggie off of one of her prophylactic medicines that we think is causing all of these skin issues. Hopefully she will be okay minus her anti-viral medicine and being off of this medicine will cure some of these weird skin issues.

Finally, at Maggie's orthopedic appointment, they took her cast off. She was afraid of the machine that cut into the cast, but did very well. They decided to not do another x-ray and manuevered her leg and foot in a way that if it was hurt, she would have felt it. The doctor asked her to stand up and she refused, saying she would do it at home. She kept her word and when she got home, we put her shoe on her and she was up and walking once again while holding her walker. We are very nervous though that she might fall down and re-injure her leg, as she does appear a bit weaker and wobbly. We really want this vicious cycle to end.

Thank you for your prayers. We are very happy that Maggie continues to be a healthy little girl and we pray this continues forever.

Doctor updates

We went to the orthopedic doctor on Monday due to our concern that Maggie was not moving with her cast. The doctor thought she was probably still in pain and thus the reason she was not putting weight on her leg. Later that evening, Maggie pushed her casted foot against Andy with no pain, so we are pretty sure that it is an intimidation problem. She still is not putting any weight on her foot, but thankfully she is crawling and moving around again. We doubt she will ever put weight on her casted foot, but hopefully it won't be casted much longer as we go back in on Monday to have her 2 week follow-up. The doctor said he would be taking off her cast and getting an x-ray on it. Hopefully it will be healed and Maggie will again gain her strength (and confidence back).

On Tuesday we visited our new specialty doctor, the dermatologist. Unfortunately, as we were getting ready to go, Maggie's big blister popped and we lost most of the fluid by the time the doctor saw her. I did bring the picture to give them a full view and they were able to recover a little bit to test for a staph infection. The visit was rather fast and what he thinks it is, I'm not entirely sure. He did give us an antibiotic cream to put on the open blisters to protect her. He also said that some people have big reactions to mosquito bites or it could be a response to her medications. Basically, we have another appointment in October to see how she is doing and the plan is for her to be off of the medications that might be causing her skin sensitivity. One thing that was of comfort to us was that he has seen blisters like that before, so we could relieve our minds of any "R" scares.

We have Maggie's monthly clinic appointment on Monday. Like every other month, we are nervous about this appointment and Maggie's count check. In the past 3 months, we have had counts checked every 2 weeks and this time it has been a month. I am very worried, for no other reason, but to worry for what could be. We have several end-of-summer plans that we are waiting to confirm until we get Maggie's counts. Please pray that Maggie's numbers continue to show us that she is completely healed of cancer.

Skin Sensitivity

Because we have spent so much time using this blog as a medical journal for us to look back upon for reference, I am again posting a medical issue. Since Maggie has come home from the hospital, she has had more extensive skin sensitivity. Being that she has fair skin with the auburn hair, she has always had sensitive skin, but we have seen very extreme cases in the last few months. We attributed it to the anti-viral medicine she is on. If she goes out in the sun for a minute, her skin becomes very red. She burns very easily and if she is hot, she will have a flush look about her on her face and arms. We get comments all the time about her being sunburned, in which I always have to explain the situation (I don't want them thinking I am a bad parent for not putting sunscreen on my child).

Back in May, Maggie rubbed up again some bushes which created a blister. Of course we were very worried about this as we are extra sensitive to skin issues. We thought it was a reaction to the rose bushes and in time, it went away. Then other blisters started popping up on her arms from where she had a cut or scrape. It seemed anytime Maggie took any insult to her skin (mainly her arms), a blister would appear.

On Thursday Maggie went for a walk with Andy and the next morning I saw several red welts on Maggie's arms--mosquito bites. By afternoon, she had scratched the one and a blister had popped up. It was the size of a dime and soon she got hold of the other bites and little blisters had appeared. We covered them up with band-aids to disallow her from any more scratching (she likes to pick at scabs when she is falling asleep). By Saturday, the blister had doubled in size. Andy was quite nervous, so he called Dr. French. Dr. French was cool, as always, and told him to cover it and wait for it to pop.

I decided today to give the hemoc clinic a call again to see if there is anything we could put on the blister as it appeared to have grown larger. After talking to a nurse and sending a picture of the blister to her via email, she called back. She immediately said, "that's an impressive looking blister." It is not anything they have ever seen before (of course Maggie always has to be the rare bird), and they immediately called dermatology to get Maggie in for an appointment. Normally it takes a month to get in, but there was a cancellation for tomorrow, so we will again expand our specialist portfolio. Though I am not fond of dermatologists, given that that was how we started this whole mess of leukemia, the nurse did say it has nothing to do with relapse and Dr. French thinks it's an immune system response. Andy had previously looked up some information and found the same suggestion.

I am posting a picture of this "impressive and rare" blister for us to catalog into our medical journal. Just a warning that what you are about to see is graphic and may not want to view it.

On a side note, we are visiting the orthopedic doctor again tonight to take a look at Maggie's leg. She continues to not put any weight on her leg and is not crawling or moving much. The point of the cast was for Maggie to be able to continue walking while it healed. It has not done that and instead has immobilized her even more. My hope is that the cast might be able to be taken off to allow Maggie to not be paralyzed to the same spot on the floor. While I was on the phone extensively on Friday trying to convey my concern of her immobility, they feel that she most likely has a hairline fracture given her leg history. We will see what comes of our visit tonight.

Might we say Maggie likes to keep us and the doctors on our toes?

Adventures while Away

While visiting my parents house, we went to an animal farm. We took a ride on a wagon and fed all the exotic animals. It was quite fun and by the end of the wagon ride, Maggie was feeding the animals by throwing the feed to them.

The animals came right next to us and ate out of our buckets and on the floor.

The Lehman cousins visiting the farm with us.

They also had a petting zoo. Maggie was very brave and wanted to pet all the animals. She also got to pet a bunny again and even held a duck. She still talks about the duck jumping out of her hands. She has a real love for animals.

Here she is petting a donkey. Another animal was about to steal the camera shot as you can see.

We also visited the Mennonite Relief Sale in Kidron. Andy drove up after work on Friday and met us at the sale. The highlight for me was of course the food. The highlight for Maggie was the train. She rode it 3 times. Unfortunately for Andy, the train was not larger and he had to maneuver his way in and out. (Thank you to the Maurer's for the photo).