Apologies and "Progress"

Good Morning, everyone. Jaime here again...
You'll have to forgive my meltdown post from yesterday - things seemed to me at a calamitous crossroads when I wrote. After some discussion with Chester about the companion situation, I got smart and called the wonderful Gayle, the Social Worker at the Cancer Center and had a meeting with her to explore resources. While there are only a couple of avenues available to us, there are alternatives come August, when we will no longer have a friend or family companion available to us. (One of my jobs in overseeing Chester's care is to plan ahead - and I could clearly see trouble coming not too far down the road).
So - the first (and pretty useless) alternative is for Medi-Cal to provide "some" companion care - with a maximum of between 30-40 hours per week - by people in their employ. This would consist mostly of intermittent oversight - cooking, cleaning, bathing, etc - but would not meet our practical need of having someone available 24/7 as has been the case up til now.
The second and most practical solution will be finding Chester a bed in a nursing home where he'll be overseen by a nurse's aide in a semi-private room, with a nurse on hand for any medical emergencies. Because he is in relatively stable health and does not need extraordinary attention at this point, Gayle felt Chester would be relatively easy to place in a facility somewhere in the bay area. While not optimum, in that it will provide no real privacy or independence, it is the best that can be managed under the circumstances.
The third alternative - and again, one that is not optimum - is for Chester to return to Missouri and live with his family, who can "tag team" one another as his caregivers.
We'll have to play these options by ear, so to speak - but with a companion-less future looming, we'll need to have things in place for this eventuality.
On a different note, Chester had a new MRI this past Wednesday morning, and was due to see his doctor at UCSF that afternoon for a comparative reading of this new scan and his previous scans in order to determine what's going on in his head. The contrast used in the procedure, however, gave the boy a bad case of diarrhea and that, coupled with little sleep and the extreme heat of the day, caused us to cancel that appointment. However, the report that came with the films states that there is no appreciable growth of the cancer since his last MRI!
That gave us a bit of relief, since several of us have noticed that Chester's speech and general mentation has "slowed down" in the past few weeks... which we feared might be an indication that the cancer was gaining the upper hand. Based on this cursory MRI report, however, the slowdown may be more a result of the second anti-seizure medication that was added to his regime a few weeks ago... Stay tuned - we've rescheduled his UCSF appointment for this coming Tuesday and should have further results to report.
On a personal note, thanks for the emails of concern regarding yesterday's meltdown. I'm personally going through several levels of deep stress in my personal life at the moment - and the addition of the big void ahead in Chester's care simply worked my last nerve. But enough of that - this blog is about the Cheeky One and will return to that focus exclusively.
You're all up to speed now on the situation as it stands, and we'll keep you informed of the next developments - whatever they may be. In the meantime, if you know of anyone who would be willing to step up as his companion beginning in August, please give a shout - otherwise it will be time to place him in a facility that can do for him what so many of you have already done.

Turmoil of a Different Kind

Well, ladies and gents, it's Jaime here (I couldn't get into the site to post under my own name).
I know it's been very quiet here and there are many reasons for it... First and foremost is the turmoil going on in my own life and the lack of someone else to consistently help with Chester's care. So, we are at a crossroads and trying to figure out how best to deal with the situation.
WE NEED HELP in caring for Chester, but are getting no responses. I am at the end of my own rope in what I'm able to do for him, and am about to go "nose down" from the effort - which will do none of us any good. I will be meeting with the Cancer Center's Social Worker to investigate other resources for finding him a companion - perhaps there is an outfit that can provide that under his Social Security Disability? If we can't do that, perhaps there will be a "full-care" facility that he can live at which will provide him with the peace of mind of having someone who can help with the little things of daily living as well as moments of distress or emergency. If neither of these is a possibility, the only other option we can think of at this moment is for Cheeky to return home to Missouri where his family can "tag team" one another as his caregivers.
These are very painful words for me to write, as I'm having to admit my own weakness and flagging endurance. But it has been over a year since this journey began with Chester and, as much as I thought I could bear up under the stress, I was wrong and am beginning to feel serious emotional strain and physical depletion.
So... where do we go? Who can we turn to? What is the next development here? I wish I could say, but the answers are not coming.
Any ideas (or cavalry troops) would be greatly appreciated.

Misunderstanding Conundrum

I have come for suggestions regarding a consistent stumbling block of miscommunication.

I can not speak quickly. A perceived emergency gets me anxious. Anxiousness soon turns an uncontrollable cascade of neural firing. I hurry against this further exacerbating the process.

A common reaction is that the person who cares for me feels blamed. The blame itself cuts all directions. The vulnerability is both ways. Ships passing in the night at break neck speed.

There are several things that I have tried. Try to relax, and determine whether on not an emergency exist. Usually none exist, but I've already caught the panic. Once activated, blame of any stripe, and usually more than one exists simultaneously, must run it's course or be interupted.

Whether there are suggestions or not, I would like for people to be aware of this dynamic.

chester

Made it!

I made it!

Alive.
Moving, slowly, yet moving, walking, ambulating they call it. Sashay I call it.

The wheelchair is another matter entirely! Part stealth vehicle, learning new moves weekly. I learned three new modes of propulsion in the last three weeks. Backward of course, slithering, and going directly across the 'demon drains' rather than avoiding them. This adds a booster, as well as more even ground.

Talking, a little slowly, articulation and grammar clear most understand me. As with most things, it is spotty. The 'problems' are staying apace of the progress, which are right problems to have! I do need to focus on the progress.

I'm looking forward to more postings in the near future!

chester

Gaining Momentum!

Good News!
Chester saw his neurologist and neurosurgeon this week. Dr Lee, the former, upped his anti-seizure meds to help keep things under control, while Dr Tang, the latter, was very pleased with the state of his head wound and approved a new round of chemo!
In fact, Dr Tang commented that he thought Chester was doing better than at his last consult - that there has been no evident growth of the tumor nor any noticeable deterioration in his strength or articulation. In a phrase, our boy is "beating the odds" - it's been 13 months since the onset of his first symptoms and, with his upbeat response to the chemo and his health holding steady, we're all feeling more optimistic!
On the more mundane side of things, Momma Flo returned home last week and was replaced by sister Dawn. The new bathroom sink was finally installed as well - leaving his daily rituals a much more comfortable task (as well as giving him much more manuverability in the smallish bathroom). It's the little things like this that make life better!
In fact, Chester said yesterday on the way home that he's ready to start posting his own updates to this blog occasionally - so we can all look forward to hearing the latest developments "directly from the source!"
Stay tuned!