Monday, February 04, 2008

Update/prayers for my nephew & latest on Jess

It's 5:30 am and I just got Miss Jess back to bed... again! She's not feeling very well and not sleeping well either. I've been sick most of the week and haven't gotten hardly anything done. I had high hopes of being able to accomplish something today - like taking down Christmas decorations! - but I think I will be sleeping as much as I can instead. *sigh* Since I'm up I figured I would go ahead and ask for some information and prayers for my nephew.

For those of you who don't know about my nephew, here's a quick background: Oct of 2006 at the age of 15, my nephew, Marcus, was diagnosed with anaplastic astrocytoma. The very next day he had surgery to remove it. He has gone through radiation and chemo and finished the maintenance chemo in Oct of 2007. Now he is supposed to have MRI's ever couple of months. Marcus started having a lot of pain in his legs and they have been giving out on him so they did an MRI ahead of time to see if the astrocytoma has spread to his spine and it came out clear. *big sigh of relief* although we still have no idea what could be causing the pain and sudden weakness in his legs. But wait.... there's more:

Here's what my sister wrote on Marcus's carepage:
"I know that was a big relief, Marcus's last MRI, and all is good in that department. But... we got a call the next day from the doctor that we saw that day. She said that she decided to look back at his last MRI reports and found something that she didn't know if we had been told about. She told John (the dad) that there was a "thickening" on the meninges caused by the radiation, but it was benign. I called her back this last week to clarify a little more. She said it was "meningioma" which to me and the research I have done, is another tumor that is mostly benign, but some can malignant. She didn't use the word tumor, but sounded pretty sure it was meningioma caused by radiation and that it has been on his scans since AUGUST. She said that if it gets bigger that they would send it to Neuro-Surgery and they would discuss surgery to remove it. To me that sounds like a tumor. Marcus's Dr. has been out on Personal leave so things have not been very well managed, in my opinion. So we are trying to decide as to what to do. We are looking at a second opinion at National Children's Hospital in D.C., plus we are looking at another Neuro-radiologist to read his scans again. With the advice of another Doctor, she thinks that having meningioma this early after treatment is almost rare-to-none. Anyway, sorry for rambling, but I just wanted you all to know what we are thinking about doing, and if you could keep us in your thoughts and prayers that we make the right decision. It would be deeply appreciated.
Thanks so much,
Karen"

If any of you have any experience with brain tumors or radiation/chemo complications, please email me or leave a message here. You all are such an awesome resource of information and support! We appreciate any prayers or well wishes too. Marcus's carepage name is MarcusRussell or click on www.carepages.com and then enter his name (no spaces).

Here's something that my sister didn't put on Marcus's carepage so shhhhh, I'm letting you all in on a big secret: The Make A Wish foundation came to visit Marcus and they are working on a wish for him! It may involve fighter planes or going on a trip... OK, that's enough info until Karen announces it on the carepage (or her blog). But like I said... it's a SECRET! ;-)


Last but of course, not least: We got the results from Jessica's last holter monitor. She is still having around 10,000 PVCs a day but seems to be having more symptoms OFF the medication so for now we are leaving her on it. I figured out that she was having tummy aches from taking the Procanbid right when she got up along with her Carafate so I have held the Procanbid until after she eats along with her other "morning" meds - which has to be an hour after taking the carafate. Unfortunately, sometimes I am slow to get her meds to her and so she has been taking the Procanbid more like 2 - 3 hours after waking up and the last few days she has been having more symptoms of her heart beating hard. It could be from the delay in giving her the Procanbid which makes me sad to think it could be my fault. But Jess has been sickly all week so she could be having break-through symptoms. It's hard to tell... and with me feeling horrible all week and not getting much sleep at night it's been a miracle that I've been able to give her all her meds. Thank goodness I have a meds schedule on the inside of the cabinet.

OK... enough whinning. Time to go to bed, set my alarm to get up in a few hours so I can cancel an appointment for Jess with her psychologist for this afternoon since it's supposed to be rainy, cold, windy and I just can't take Jess out in that type of weather. Besides, we haven't had any sleep. Then hopefully Jessica's aid will come and I can have a looooooong nap. Did I mention that as soon as we started feeling sick last week Jessica's aid got quite sick and was out all week? Fortunately we only went 2 days without an aid and an old friend/aid was able to fill in for the weekend. Otherwise I'd be in a padded room for sure! I hope our regular aid is feeling better. She's a single mom and it's gotta be hard going at it alone! Besides, Jess misses her. awww... Well, I can hear the wind starting up already and soon Karl and the boys will be getting up and going for their day.... Hopefully the next post will contain pictures that I keep promising you!

3 comments:

Awesome Mom said...

I hope that things start looking up a bit for your family and that you can get some sleep.

chelle said...

Hang in there. I thought of you the other day and was hoping all was well with your family and Jess ...

Mama Bear June said...

Praying for Marcus and Jess.