Tuesday, April 28, 2009

A little more news

The last few days have been mostly waiting...Jodi and Sherri stayed at home all day on Monday because there were supposed to receive a call from Dr. Couldwell. After many tries to his office, they were never able to get through, but didn't dare leave and miss the call. This was frustrating for Jodi, as each day she feels like her life is "hanging in the balance".

On a positive note, she had a really good day, and felt well much of the day. She had visits from good friends and neighbors, which always makes her smile. Loni (DeFriez) Jay came and spent the morning visiting and helping with the kids so Sherri could run errands. Rose Bell and neighbor Catalina came by with wonderful wishes and wise words. Neighbors Cindy and Mark brought over a yummy pasta dinner which just about everyone ate (Wow!) so mealtime was good, too.

The long-awaited phone call never came yesterday and by the time Tolan got home, Jodi was getting restless. She hadn't left the house in almost 2 weeks, except to go to the hospital or doctor's appointments. So, Tolan took her to the mall. They have borrowed a wheelchair from Jodi Carlson, a good friend who had a stroke last year. Jodi C is walking again now and was kind enough to let them use her chair while it is needed.

Jodi can still walk, but the vertigo is so intense, her walking is hampered by her brain as it makes everything spin. So, a stroll in the wheelchair takes much less focus and effort. Tolan spent nearly 2 hours shopping with Jodi (she said he was very patient with her!!) as she tried on clothes. In the end, she was exhausted, but had fun feeling "normal" for the first time in weeks!

Today the phone call from Dr. Couldwell finally came.

Good news -- He said the test results for MS and multiple other "disease" illnesses came back negative (though MS is one of those hard-to-diagnose possibilities that is nearly always there).

No News -- They still do not what what she has. It does not fit into any "category" that yet makes sense.

Good News -- Dr. Couldwell told Jodi that he has many people looking into her case. He took her information to another set of doctors this morning and they all discussed it together. Though there was no consensus, he continues to involve people and look for answers. He assured her they will continue to look.

Test news -- They recommended a test for another disease, Sarcoidosis. This disease is an auto-immune disease that causes the immune tissues to clump into small masses that resemble tumors. In many parts of the body, this disease can be treated, if it appears in the brain, it is dependent on location.

Next steps -- Tomorrow Tolan's dad is taking Jodi back to SLC to the Huntsman Cancer Center where they will test for Sarcoidosis. It is a simple test and results should be back in a few days.

Dr. Couldwell also is setting a date for a biopsy of the "tumor". It won't be for at least 10 days, but he wants to get her on the schedule so they can finally figure out what "IT" is. They haven't talked about risks/benefits or surgery routes, but will do so prior to actually going forward with a biopsy. But, by putting her on the schedule, at least a plan can be put into motion, even if they later decide against the biopsy. Much prayer and many discussions with the doctors and family will take place before any decision is made.

In the meantime, Jodi is asking her docs at the U to work with a team at Johns Hopkins. Jodi's friend, Clark, has opened up this door with some of his contacts so they are pursuing a course of action that will let the Hopkins team see all of Jodi's information, scans and test results. Hopefully someone there will have more ideas.

The family continues to be overwhelmed by the love and support they feel. Thanks to everyone for their help, meals, calls, visits, cards, babysitting, etc.

Jodi doesn't want to miss anyone who has helped, but specifically wanted to say thanks to Tamee for all her pick-me-ups... plus Brittany, Annette, Cami, Andee, Cathy, Wendy, Jeanette and all the 8th and 5th ward friends who are doing so much everyday. Jodi is also sooo grateful for her family....can't say thanks enough to parents, siblings, in-laws, cousins, aunts, uncles, etc. Love to all.


britt said...

well Jodi, at this point ANY news is GOOD news, right. At least it is giving something to think about and possible directions/options to pursue. Keep me posted! Let me know if thursday works to have casen over.
hang in there
love ya

Patrick said...

Jodi, I'm feeling very optimistic for you. The good news seems to be coming in (slowly) and you've got the best support group in the world. I'll be sending my prayers as well. Keep your chin up!