30 August, 2011

Kasie with Allie, Robert and Ben (and two other kids) with the Governor and First Lady of Ga. 

A Milestone

     Since returning from our 16 day admission, we've managed to stay home.  We were rather surprised when Robert's counts were too low for chemo last Monday.  They finally started to creep up this week, so we were able to proceed with our scheduled clinic visit yesterday.  However, this wasn't just the average clinic trip, this was the official start of long term maintenance. What does this mean?  The primary difference is that most of his chemo over the next 3 years  will be in a much lighter dose, and will be given in pill form from home.  We should only have to go to clinic one a month!  In between clinics, we will stop by our local pediatrician's office for a counts check.  Once a month...that's hard to even imagine.

   In the bigger picture, this means that his immunity will be able to stay higher longer, which means a more normal life.  We will certainly still have our spells.  When he gets a virus, his counts will drop and he'll be down for the count for a while.  If hes sick from his clinic visits, he may need to miss a day or two.  But nonetheless, this is a new beginning for us.  To celebrate we went out to dinner, the first time that we were all able to go out to dinner in 9 months.  Chemo still stinks, but tempered with bouts of normalcy, it just may be a bit more tolerable.

21 August, 2011

So far so good

Since returning from the hospital, things seem to have been going well with Robert.  He has seemed to grow stronger everyday, and we are anxious to see his counts in clinic tomorrow.

14 August, 2011

Finally

We are home.


-Bob Hart

Just got the news

We are scheduled to be released late this afternoon. Robert's counts are still very low, but are definitely trending up with monocytes doubling twice in the last two days.

We should be home for dinner.


-Bob Hart

13 August, 2011

A fortnight of stalemate

Day 15 finds us still at the hospital. Thursday's blood transfusion brought a dip is some of Friday's counts and a false rise in others. Today (Sat) showed a slight increase. There is talk of releasing us tomorrow since we have maxed out this cycle of antibiotics. I've about had my fill of speculation, we'll just wait and see.

11 August, 2011

Thursday

Today is day 13 in the hospital.  Roberts counts have been fluctuating but really haven't made any significant gains.  His Hemoglobin was getting low, so he is getting blood transfusions today.  There are a few monocytes on his labs which are often a precursor to an increase.  Maybe that along with some new blood will get things going.

09 August, 2011

Tuesday

Day 11 is here and Robert's counts have dropped again.

We are making the best of it and having as good a time as possible. I expect to be here a few more days.

07 August, 2011

Still here

Tomorrow will be day 9 at the hospital. Robert's counts Started to climb a bit, but have fallen again. As soon as he is consistently trending upwards we will leave. This last treatment phase (delayed intensification II) has been a rough one. His little body is just feeling the cumulative effects of the past couple months, and has bottomed out. He is happy, having fun most of the time and there are no signs of fevers.

Greener pastures are in sight, they're just hard to see from this hospital window.


-Bob Hart

04 August, 2011

Just waiting

Robert is feeling much better, and is up and around. The photo below was taken in the hospital garden.

As soon as his counts start to recover we will be released. Hopefully this weekend.

02 August, 2011

Waiting

Robert is still in the hospital, waiting for his counts to rise before he can be released. He has two blood transfusions over the weekend and will likely get a platelet transfusion today. He's tired but content and making the best of the situation.