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.

Ankle Update

Just a quick update about Maggie's ankle. We went to the orthopedic doctor today and after another x-ray found that Maggie had broken her right tibia. So it was never her ankle that was hurt, but with toddlers who are not quite apt at communicating their pain, we didn't know. The doctor told us that the x-ray shows that it is healing and based on the healing process probably was broken about 14 days ago. He did not put a cast on her because of its own ability to heal and told us that in the next couple of weeks Maggie should begin to put weight on it once again. If not, we are to contact him and get another visit.

I had prepared Maggie for a cast (I had no idea what to expect) and so I told her she would be getting a very big band-aid on her foot. When we got to the room, they had the different color of casts to choose from and Maggie picked "purple." So when it ended up that she didn't get a "big purple band-aid" she was a little upset. The resident did give her a little blue band-aid, but I don't think it lived up to her standards.

We were also told by the doctor that Maggie's bones are very brittle due to the chemotherapy and steroids that she has taken and for that reason she will be at higher risk for injury. The way to build her bone strength is to get her to put weight on them, so hopefully we can get Maggie healed quickly and her bone density will increase with exercise and use. It's not surprising that she had this break given all that she has been through and what cancer treatments do to the body. The hope is that it will easily (and quickly) reverse so that she can continue to thrive as a toddler.

Thank you all for your prayers. We appreciate them and are relieved with the answer we received today.

Maggie's ankle

Well, unfortunately, we got some news today about Maggie's ankle. When at our clinic visit, I asked Dr. French if it would be possible to get an x-ray to assure that Maggie's foot was okay. I didn't want to push her if she was indeed hurting from her injury from 2 weeks ago. We just got a call saying that Maggie's ankle has a fracture. After some rearranging of doctor appointments (Maggie has a pulmonary appointment in Cincinnati tomorrow), we are going to go to the orthopedic doctor to have Maggie put in a cast. Our pulmonary appointment has been pushed to July, so hopefully Maggie's lungs will continue to improve.

While Andy says that now we have an answer to Maggie's pain, it hurts me to have to put her through yet another doctor's appointment. I don't know what tomorrow will entail and how long it will take for it to heal (as well as if it will heal properly given it is now a 2 week injury). Hopefully everything will work out and this will help Maggie to start her adventure in walking once again.

Maggie's labs continue to show us that she is doing well. Her hemoglobin and platelets are the highest we've ever seen them. We pray that Maggie continues to show us through her labs that her cancer is gone forever. Please continue to pray for Maggie, that she is completely healed and that her fracture will heal without any lasting affects.

Maggie's News

We continue to have pretty good days at home. When the weather is nice, Maggie enjoys going outside for walks in her stroller and red car. She has hit the golf ball with her Daddy as well. Maggie has had several doctor appointments and therapy evaluations since being home as well. So far, so good. Maggie will not need occupational therapy, as at this time the therapist doesn't see it as a need. The speech therapist also has decided she doesn't need regular therapy. Maggie hasn't been eating well and at times will spit out the little bit of food that she does put in her mouth. At this time, Maggie's lack of eating seems to be from the increased amount of formula she is receiving through her NG tube. By Sunday, Maggie will be at her goal amount of feeds and we will then look at giving her breaks during the day to hopefully see if that will stimulate her appetite.

Maggie continues to not put weight on her legs or feet. The physical therapist thinks that the muscle behind Maggie's leg (connecting the achilles and calf) is tight and is causing pain. We need to stretch it to give her a chance to eventually put some weight on her feet. Maggie's right foot still seems to be bothering her, so I am considering getting an x-ray on her foot/ankle tomorrow when we go to the clinic. I am getting a bit antsy for the day that Maggie can stand and walk again. It feels like it will never happen, but hopefully we'll be able to work out this problem and she will have the strength and confidence to once again do so.

Finally, Maggie has been wanting to share some big news in our household. We took pictures to help her share the news.

"Look what is under my sweatshirt!"

"I'm going to be a big sister!" It comes at a perfect time as Maggie was just watching a Dora episode the other day and Dora became a big sister too. She thinks her shirt says Dora on it, but hopefully by October, she will have adapted to the idea. We aren't exactly sure how we're going to do it with another little one, but the hope is that we will have Maggie walking by then. Here's to Maggie walking by the time she is 3!

Reunions

We successfully made it home Friday evening; it was a very exciting time for us. As Maggie was on the ventilator for so long (43 days) we often wondered what she'd remember from before her illness. What would be the effect of being unconscious for over a month? Well, the car ride home was a little bit harder to enjoy than we had envisioned--our car was packed to the roof with all of our things. But as we got closer and closer to our home, Maggie started getting excited to see our neighbors' dogs running around outside. It was all she could talk about. We were happy to know that the things that used to make her excited....still made her excited.

She has transitioned well to being at home. She is crawling a little bit, but is mostly staying where we put her. She is enjoying her old toys (some new ones) and the sights and sounds of the Backyardigans. Things are good.

The course of the recovery of Maggie's lung injury was impossible to predict. The specialists all said that it could take a long time. I'm sure it will be a while until her lungs are fully recovered. One of the pulmonologists predicted one of the things that we would see is a sudden stretch of dramatic recovery. It was just a question of when. Well, that has happened. Maggie went most of the weekend and the first part of this week without any oxygen support. We have given her a little bit of help when she sleeps, but she has made some big strides. The lung recovery will be ongoing, despite the progress. Maggie's appetite is minimal, but she is off of TPN entirely and is still tolerating the very gradual increases of her tube feeds. We are hopeful that the worst of Maggie's chronic GI issues are behind us. The other issue that we are seeing is that Maggie is struggling with a sore foot. She injured it shortly before we were discharged last week. She won't put much weight on it, and as a result, she hasn't had the time to work much on her leg strength. We hope that she gets over it soon. Today she had a weird day--she seemed scared easily and a little bit insecure with her surroundings. We'll figure it out, I'm sure.

It was an exciting day for us today as we saw Dr. French and his staff at the Hem/Onc clinic at Dayton Children's. We did a little bit of catching them all up on Maggie's last few months, made some plans for the near future, and we had a celebration. Maggie got certificates, a cake, a gift (baby doll), and best of all, she got serenaded by the nurses: "No more chemo for you, no more chemo for you, no more chemo for Maggie, no more chemo for you!" It was a song that we had heard once or twice in the clinic when other children reach the end of treatment, and we've looked forward to it more than anyone could imagine. Everyone was thrilled to see Maggie, and they all thought that she looked good. Following our visit there, we made a quick stop in Dayton's ICU to complete a promise that I had made when she was being wheeled out to go to Cincinnati: we will bring Maggie back to visit with you, and soon. It was an emotional reunion there, too. We have just received amazing care over the past few months and so many people are excited to see her doing so well. Dr. Joshi was able to see her (he was the attending intensivist who spent the most time with us in Dayton) and we had hugs for him. We also saw, among others, the rest of the team that transitioned Maggie to Cincinnati: Andrea, our nurse for the difficult last day in Dayton, and Brian, the respiratory therapist who was one of the kind souls who rode in the ambulance with her. We are so grateful for the hundreds of people who helped Maggie get through the most unbelievable and horrifying illness. We hope we can reunite with them all in time.

Until then, we pray that you all are well. Goodnight.

Guess what?

Towards the end of last week and during the first part of this week, the doctors' goals were to keep Maggie stable and to make some changes in anticipation of someday going home. For instance, they wanted to find a schedule and dose of diuretics that would 1)allow us to administer the meds easily from home, 2) keep her from retaining fluids, and 3) not risk her becoming dehydrated. Also, they have been following up on tests (repeat EKG and Echocardiogram for her heart) and investigating her acid reflux. Maggie's respiratory rate had been a bit increased, so they started exploring causes of that as well. In the meantime, they started calling Maggie's doctors in Dayton, arranging for a pulmonary specialist from Cincinnati to be assigned to Maggie's care for the long-term, preparing take-home-ready oxygen tanks and pumps, feeding pumps, oxygen saturation monitors, etc.

As the week progressed, Maggie has shown some good signs. In the last 2 days her oxygen requirement has not only been stable, but gone down (her lungs made a step in the right direction). Her respiratory rate has gotten a bit closer to normal. Her overnight desaturation episodes seem to be less of an issue. She will continue on an anti-fungal medicine, a heavy duty anti-viral, 2 diuretics, several stomach medicines, and a potassium supplement. But all of the goals for the week are going quite well.

Maggie continues to impress medical folks who come to see her. Those who saw her at different stages of her recent illness (or those who just read the records) are very, very happy to see how she looks. All said, we are extremely blessed. We paid a visit to the PICU tonight to see some of our nurses and doctors. We couldn't have been happier to get to show Maggie to everyone who helped her so much. In time, we'll visit the ICU in Dayton, too.

From a cancer perspective, her blood counts have been normal (now 11 weeks post chemo). We can now get back to the often challenging stage of being off of treatment. I am sure we can post more about that at another time. Maggie's lung injury will also require us to make some changes that will be tough--significant isolation from people, public places, and any place where she could catch a cold or respiratory illness of any kind. Her lungs, though improving, are going to be fragile for a while.

Wearing daddy's shoes.

Enjoying her first bath in months.

Showing off her lotion while getting a waterless hairwash.

One last hurrah with her old shoes--she has grown out of her clothes and shoes since being in the hospital.

So we are leaving the good (amazing doctors and nurses who have become like family, the fancy hospital bed, room service) and the bad (beeping monitors, medical crises, interrupted nights, make-shift recliner/bed-for-two) of the hospital so that someone else can use our room. They can have it, cause we're going home.

After I finish this post we'll get ready for bed, hopefully get some sleep, get through a work day tomorrow (Friday), and then hit the road and head to Dayton.

We'll have more reflections, more pictures, and a lot more thank-yous in the coming week or so. Until then, thank you for your amazing support.

God's blessings to you all.

Nine weeks and a taste of the outdoors

The doctors have jointly come together (pulmonary, oncology, & nephrology) to make some decisions about Maggie's situation. First off, her acid reflux test came back normal, meaning she doesn't have acid reflux (the antacids she is on are working). The kidney doctors ordered a test of Maggie's kidney function to determine if she was having problems and thus the reason for retaining fluids (as well as checking to see how her kidney function was). This test came back normal; well actually better than normal if that is possible.

Pulmonary came to rounds yesterday morning to help make some decisions in regards to Maggie's upcoming tests (an oxygen study & sleep study). They decided at this point in time, they are not going to do either study because they don't feel it would give any more information to what they are already treating. They also want Maggie to be completely weaned off of her withdrawal medicines. She will be finished with these meds (methadone & valium) on May 4. They have decided that the de-sats that Maggie is having at night are most likely related to the sleep cycle that she is in-- REM sleep. So, the sleep study might eventually happen, but probably as an outpatient visit.

Pulmonary also suggested moving Maggie to oral lasix to help with the potassium problem as well as help with our future plans of discharge. They need to be able to have a plan in place that helps her to get rid of fluid yet keep her electrolytes at an appropriate level. This oral lasix began yesterday so we will see how she does in the next couple of days.

Maggie's oxygen requirement remains where it has been the last week plus. She goes from 3/4 to 1 liter. She grows tired in the evening and we can tell because she does more de-sating after 5:00. We try to keep her as relaxed as possible since the more energy she exerts, the more work it takes for her lungs to function properly.

Today marks the 9 week mark of being in the hospital. Today, Maggie went outside for the first time in that 9 week period (we aren't counting her transport down to Cincinnati). Her occupational therapist took her outside on their playground on the roof. She had a wonderful time playing in the sun on the blanket and going down the slide. A friend that works at the hospital was there and took the pictures that are posted. Maggie is enjoying life to the fullest. I'd just like to be able to have her enjoy it outside the hospital too.

We put the clothes that we packed for Maggie back in February on her. We have found that her pants are too tight in her diaper area and too short, her sweatshirt is very tight around her, and her shoes are too small (I think due to some wideness in the foot). We might just be buying her a whole new wardrobe when we leave here, as she has gained over 5 pounds since being admitted into the hospital (much of that is most likely fluids).

Maggie picked a new toy out and played with it on the blanket outside.

She is crawling! Maggie is getting her strength back and doing some of the things that she was doing before she got sick.

She went down the slide 3 times. I think one of her highlights of being outside.

What a happy little girl! She is such a joy.