31 July, 2011

Update

We are now in the final phase before the much anticipated long term maintenance, and it's a rough one.  We saw the return of the painful ARA-C (chemo) shots at home, the final one completed 2 days ago.  All of the increased therapies in this phase have take a toll on Robert's system, his ANC was 0 on Monday. We were able to make it a few days at home but are now back in the hospital with fevers.  Once this admission ends, we should be able to get back on track towards moving on to the next step. 

School will be starting in a couple weeks, and with this development I think that Robert will start a little late.  But once he gets going, he should be able to enjoy a fairly "normal" year.

11 July, 2011

Relaxing Weekend

We were able to enjoy a relaxing weekend.  Low counts and a tired boy kept us at home, but we made the best of it.  Low grade fevers persistently threatened, but stayed below the threshold.

09 July, 2011

Ferrum Friends?

I’ve previously mentioned the new perspective on just about everything this situation has given me.  My views on friendship have not been excluded from this.

Clearly in an effort to signify its value, friendship is commonly made akin to gold and valuable items.  “make new friends but keep the old, one is silver the other is gold” for example.  Though the premise is laudable, I just don’t see it that way. 

Surely old friends are a valuable asset to anyone’s life.  But there have been people that I have only newly met, who have gone above and beyond for my family.  The way I now see it, a friendship is better defined by its actions than by its age alone.  Many friendships are formed from convenience, gilded and polished on the surface, but without true structure underneath. You may have a friendship that to all appearances and senses is perfect, but collapses under the weight of reality when truly tried. That being said, I do not need, nor am I capable of being the perfect friend.  I won’t remember your birthday or anniversary, nor will I try.  However, when you need a confidante, partner in crime, or strong back, I’m there.  New or old, I am of the opinion that the strongest friendships come from those who have labored together through difficult times. 

Forget gold. Those friendships forged in the fires of adversity yield steel and iron, something from which a true support structure can be built.

To my friends of iron and steel who have done so much to support us, I appreciate you.   I offer the same to you in return always, just don’t mind the rust.

07 July, 2011

Hanging In

We had a break from chemo this week, but not from side effects.  Robert has been having some pretty severe pain in his legs, which  is caused from the vincristine.  He is also dealing with the results of being back on steroids.  He has swollen back up to about twice his normal size, and he has sever mood swings.  He switches between complete anger and frustration, extreme emotion professions of love and affection, and generally pleasant form laden with about 100 words a minute of non stop talking. 

We've managed to avoid the emergency room for a couple weeks which definitely eases the stress.  Lately Robert's ANC has been extremely low, so if we have to go back we will likely have to stay for a few days.

Another month of this current stage, and then we begin long term maintenance.  Chemo will be a part of his life for at least another 3 years, but from what I understand maintenance will allow a more normal life.  Treatments will initially lessen to once every 2 weeks, then eventually only once a month. Of course there will still be issues in between, but what a difference.    It is expected that Robert will be able to start and attend school more normally this year.  He will have to miss clinic days, and any days with low ANC, but he should be able to regularly attend and enjoy being with his friends.