Feeling like himself

Since we returned from Children's mid week, Charlie has started to act more and more like his old self. The biggest improvement is that he is now walking again! He goes up and down the stairs and is pictured above standing at his play table and playing with his new "kitchen" toys. Grandmommy left this afternoon and she was pleased that she was able to witness real progress with his development. Ditching the daily steroids has helped tremendously with his fatigue, appetite, walking and overall disposition. The one thing we are battling is a set back in the potty training. This happened the last time Charlie spent time in the hospital, he just stops letting us know that he has to potty. I am doing lots of laundry and going back to the basics, but at least his rediscovered walking it makes it a bit easier. Charlie started a new round of chemo meds on Wednesday. This phase lasts for 4-8 weeks and I have been told that the side effects should not be as severe as they were for the first month of treatment. Charlie's hair is getting thinner and thinner and he has some small bald patches. I'm thinking we will have to do something different hair wise in this next phase. The doctors FINALLY got his ear infections under control and he is getting a new set of ear tubes this upcoming Wednesday. For those of you counting, this is the third set in a little over three years.

Happy Mother's Day, You get to spend the night at the Children's Hospital

Chad and I are learning that any plans we make are tentative. We had planned a nice home cooked meal for our family plus both of our Mothers, but the Oncology department had a different idea. Charlie had been battling a low grade fever off and on since Thursday from an ear infection. We got a call from the doctor this morning that the bacteria culture from his ear drainage showed that the only antibiotic that will help this type of infection is a special IV type that can only be administered while you are an inpatient and under observation. So we checked into Children's Hospital around 2pm this afternoon to receive what is hopefully the correct medicine this time. He has been on four other antibiotics since the end of March. We did order food and ate with our Mothers here in the hospital room. Nana brought her homemade apple pie and we had a fantastic dessert here as well. We should only be here until tomorrow afternoon, but again, Chad and I have learned not to make any definitive plans :)

Proof Charlie is feeling better

Charlie has been off the steriod for four days now and we are already seeing an improvement in his disposition. Abby, our neighbor and favorite babysitter, stopped by this afternoon for a quick visit and Charlie decided to show her his new toy that makes sounds and helps with his alphabet. He really likes this toy as you can see from the video.

A Tough Week

It has been another tough week here dealing with side effects as you can see from the picture. We did receive reinforcements though, just in the nick of time with the arrival of Charlie’s Grandmommy on Sunday. She is staying with Angela during the week to help out with the heavy lifting and day to day chores that take it out of a 32-week pregnant Mommy. Grandmommy was promptly thrown into fire, not only learning all the medications and maintenance of a cancer patient, but also trips to hospital everyday this week except Thursday. It started on Monday with what was originally thought to be a nose bleed that was coming out through his mouth. When it didn’t stop, we were told to come on in. We were sent home that afternoon, reassured that yes, in fact, Charlie was bleeding just not sure from where. Great.


Charlie continued to have a bloody mouth for the rest of the evening and the next morning. We were told to come in again that morning (Tuesday). Charlie’s doctor became concerned over the blood loss and he received his second transfusion. On a side note, Tuesday was also Charlie’s last day on the daily steroid. Yea! By all accounts, his looks and demeanor should start returning to normal.

Wednesday was Charlie’s last Phase one treatment and while he was out, the ENT doctor was going to scope his posterior nasal cavity for the source of the bleeding. Of course, sometime during Tuesday night/Wednesday morning, the bleeding stopped. The ENT was unable to find anything that looked like the culprit, so we left again without any definitive answers. Ruling out his nose and mouth, our doctor decided that the bleeding must be upper GI related and prescribed more medications as well as an order to come back on Friday for some blood work.

Yesterday (Thursday) was a great day for Charlie. He was alert (no dozing) and generally happy. Angela and Grandmommy were able to get him out for lunch with dad and a trip to some garden centers. He developed a fever later in the day, which is a concern, but could just be related to his ongoing ear infection. Right now, Charlie is back up at the hospital for his blood work and hopefully the docs will get him fixed up so we can avoid a weekend ER trip.

We have received several care packages from friends and family everywhere. We would just like to say thank you to everybody. Charlie is still pretty immobile, so it is great to have new things he can do while he creates his permanent indentation on our couch. We can’t thank everybody enough for all the meals, gifts, well wishes and prayers. It has meant so much to us to have your support and encouragement throughout this first phase treatment. We are lucky to have all of you in our life. Thank you so much.

Our Jekyll and Hyde

So this is our Dr. Jekyll and Mr. Hyde son.  Last night at dinner Charlie was grumpy as usual and then requested to go to bed.  After about 15 minutes in bed he got up and came back down stairs in the best mood, talking and laughing.  Ang and I looked at each other and asked, "Who is this kid and what has he done with our cancer patient?"  It was so rare and unexpected, I quickly snagged the camera and snapped this "happy" photo.  It only lasted for a couple of minutes, but it made our day.

You can also see that Charlie has a high Augustus Gloop factor going on these days.  The steriods have puffed up his cheeks and given him a bit of a belly.  Ang calls these "chipmunk cheeks".  We are in the home stretch on the daily steroid (five more days) and we are optimistic that after they get flushed out of his system we will see more Dr. Jekyll and less Mr. Hyde.