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).

A Week Away

Last week we spent the week at my parents house. It was much needed time away as we haven't been anywhere but the hospital or our house since February. We asked if Aunt Morgan and Cousin Parker might be willing to visit with us for the week as well. Maggie loves her Aunt Morgan very much (sometimes Andy and I take the backseat to Aunt Morgan).

Maggie enjoyed pushing her stroller around and practicing her walking during our visit. She also enjoyed the extra attention that she doesn't get at home.

Maggie voluntarily played with Parker on his play mat, however once I came with a camera, she was done. Thus the reason for the look of distress.

This was one of Maggie's favorite toys, my old doll house. She also enjoyed playing with the tractors. She spent quite a bit of time playing by herself, however, was very happy to have Pops play with her too.

We thought it was very cute when Maggie was imitating Pops while playing.

Maggie got some new Dora underwear. While she still is not ready to wear them, we put a pair over her diaper. When she had them on, she refused to wear her skirt as she wanted to show off her Dora underwear.

Swinging with Aunt Morgan while sporting her Dora underwear.

Our Favorite Things

Here are some pictures from a few weeks ago that I have been meaning to post on the blog. While things have changed since the cast became a part of our lives, normally Maggie loves her baths. She will spend hours in the bath tub playing and I will eventually have to pull her out.

Also, our favorite food this summer has been corn on the cob. Last year Maggie had a picture taken with corn on the cob, however it was the butter that she ate last year. This year she is actually devouring the kernels (along with the butter of course). Her other favorite food this summer is tomatoes. As soon as she sees tomatoes, she forgets about anything else that is on the plate. Although this food is not high in calories, we have a giant supply of tomatoes from our garden that we will gladly give to Maggie.

Who needs spaghetti when you can eat corn?

These pictures are of course before the new fracture. She loved having the towel wrapped around her.

Vicious Cycle

We have had a lot going on, but this post will be short for now. We will share more of our last week at another time. But for now, we have some bad news again.

In the last 5 days, Maggie has fallen 3 times, each time causing quite a bit of crying. On Monday, her final fall created crying after the incident and all through the night. We decided we should probably take her to see the orthopedic doctor again as it appeared that she re-injured her tibia.

After having an x-ray, they could not determine whether she had broken it or not, but the fact that she was not putting any weight on it, the doctor decided to cast her. So she finally got that purple "big band-aid" that she's been told about several times over.

Maggie's continual pain has subsided although she still hurts when she is moved in certain ways. She is not putting any weight on it yet, even though she has a walking cast and she is unable to crawl. She finally was able to sit up today, but pretty much Maggie is just sitting or laying on the couch watching television. Last night we gave Maggie a bath and she cried the entire time asking for her "band-aid" (cast) to come off, please. It was heartbreaking to hear and not be able to do anything.

We are pretty sad and upset about what has taken place. Five minutes before Maggie fell, she was walking across the room by herself smiling. It is so hard to be back where we were just a month or so ago. Maggie has been so happy and proud of herself for walking. She loves pushing her baby strollers and spends hours going back and forth playing independently. It had been so nice.

We're hoping for a quick recovery and for Maggie to be healthy and happy.