Sunday, January 4, 2009

We made it home from Indiana, it's cold here too! We really had a good time, it was nice being away, none of the stress of where to be, or what to clean or wash or put away. I did get a BIG surprise when we got home, Dave had taken down the tree, including putting away all the ornaments (there are A LOT) and put away almost all of the decorations (did I mention there are A LOT). Wow, it was great! Tomorrow it's back to the grind, school and work starts.

I have been meaning to update on quite a few things, so I'll try to consolidate it here. Here is a health update for everyone-

Dave-back is still bad, but he is still acting like he can live with it. Really no other new information.

Kim-the iv line is out of my arm, came out in early December. I think the doctor wanted to try for one more month of iv meds, but not only would the insurance not cover it, but I couldn't stand it anymore. It's a big relief having it out. The doctor did put me on oral meds for a month,  as an added protection that the lyme won't come back. The medicine really started giving me a lot of problems, so we changed it over the holiday to a different one. This one seems to be much better, at least on my stomach. 

Colby-All is good. She is busy playing basketball, lacrosse and horse back riding, along with a few other activities. 

Hannah-Well it's been up and down. Poor thing threw up on the way to the airport on our way to Indiana. 4:30 in the morning and Hannah is on the side of the road in the dark throwing up. I told her she was melting the snow, but she didn't that was too funny at the time. She also threw up the morning we came back home. We were all in the car getting ready to pull out of the garage and she yells that she had to get out to throw up. I know now not to question, just to run, which we did. She also threw up once when we were there. 

Before Christmas she started missing school quite a bit, or coming home early. Her stomach bothers her every day, especially in the morning, sometimes escalating to the point of a trip to the nurse for me to come and get her from school. I have mentioned this several times to Hannah's oncologist, but my response was always "this is common in medullo patients, we have kids on anti-nausea meds for years after treatment." We did try Zantac to help with acid in the stomach, but that didn't make a difference. 

A friend and fellow cancer mom mentioned Hannah to her son's oncologist. The doctor's first response was that it could be vincristine (one of the chemo drugs Hannah had) toxicity. To put it simply, vincristine causes neurological deficits so that the bowel doesn't work properly. This, in turn causes constipation, which causes the stomach aches. 

The oncologist asked if Hannah had any other vincristine effects, which she does. One of the other side effects she has is foot drop. It's not significant enough that she trips, but she doesn't lift and lower her feet properly when she walks. I have been noticing it more lately, especially when she is in a hurry. She slaps her feet down flat-footed when she walks and runs. This is a neurological disorder caused by the drug. To be fair, Hannah's oncologist most likely didn't catch it because we didn't mention it earlier, and she never walks very far in his office when performing the neurological tests at each office visit.

So, after hearing this from an oncologist that has never even met Hannah, I contacted Hannah's doctor and mentioned the issue. He was skeptical, but agreed to monitor her before recommending treatment. A day later we had our answer and he started Hannah on ExLax! It worked a bit too well at first, so I didn't give it to her anymore, and she started having stomach aches again very quickly. She is back on a lower dose now, and she is doing so much better. She does complain of periodic stomach aches, but very infrequently. 

I just can't believe that after more than a year of stomach pain, that a doctor at another hospital diagnosed Hannah so easily. I have to say that I'm pretty disappointed in the survivor care at Schneider's. They are so very busy with the current patients and overwhelming influx of new cancer patients that they lose sight of the kids that survive, but are still having issues which compromise their daily quality of life. I know that other hospitals offer comprehensive survivor programs which include psychological counseling, medical assistance and a well rounded, all inclusive program. I know that NYU Hospital is currently establishing a new center designed specifically to address kids that have survived cancer. Many hospitals are just now realizing that more kids are surviving cancer as the survival rates go up and there is a need to help these kids. 

Of course we wish that now that Hannah is a cancer survivor that things are over and done with and everything goes back to normal. If only that were true. Things are far from how they were. Our lives were changed, some for good, some for bad, on January 31, 2007 when she was diagnosed. 

I think that's probably enough stuff to overwhelm you all with tonight. We had a great Christmas and a very fun New Year (pictures later) in Indiana. We're counting on a healthy 2009!

Prayers go out to our friend Coleman from Iowa, he was airlifted on Christmas Day when he couldn't talk or swallow. They found two new spots on his brain, just devastating. He came home about a week later on hospice to try and make him comfortable, but he is now back in a hospice home. Please keep him and his family in your prayers, they are remarkable people...Coleman

♥Kim