Willa Rose Updates

Willa Rose is the daughter of sangha member, Jody Held and Jim Frankenberger.

Friday, August 12, 2011

Hello everyone,

Willa is out of the PICU and now is in room 728 on the 7th floor at Kosair Children's Hospital Downtown. She is improving, but has some neurological setbacks  from where the tumor was pressing on cranial nerves and the brain. We expect full recovery, but she needs extra care right now to get to that point. We know we will be at Kosair for at least a week more.

If you want to help but don't know what to do, here are some options:

1.We need people to stay at the hospital with us for (preferably) 4 hour stretches. You would be a second pair of hands in entertaining, distracting and engaging Willa, as well as help when we hold her, change her diaper, run errands,  and cover for Jim and I when we go to the bathroom, eat, answer phone calls, talk to doctors or take a quick nap. We are asking for four hour commitments mainly for scheduling purposes, but shorter or longer periods of availability are also welcome. Please reply to this e-mail with the days/times you are available, as well as how many shifts you could cover this week, and we will get back to you.

2. The weekend of August 20-21, we will have a "cleaning party" at our house to make sure Willa comes home to as sterile an environment as possible. If we can get 10-20 people to commit to being there, I'm sure we can complete the task in less than three hours.

3. We need people to pick up meals or grocery shop for us. Susan Hershberg, the owner of the amazingly delicious Wiltshire Pantry and Wiltshire on Market, has graciously and generously offered meals to me and Jim while we are in the hospital with Willa, but we sometimes need people to pick them up. We can either meet you downstairs so you don't have to park, or you can bring them up to the room.

Please reply to jodyheld@mac.com if any of these options feel like something you can reliably commit to. Thank you for all your support. Of course your correspondences, well-wishes and prayers continue to buoy our spirits as well.

I will send an update in a few days about Willa's continuing progress and where we go from here.

Love, light and laughter,
Jody Held, Jim Frankenberger and Willa Rose Frankenberger
502 802-8350

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Monday, August 8, 2011

Dear Ones,


What a week! Sorry to keep all of you hanging; we've been very busy healing here!

I made an important mental and energetic leap this past week: from "Willa has a brain tumor" to "Willa had a brain tumor". Only one letter difference, but a vast change in outlook. Willa had a brain tumor. Dr. Gump, her excellent surgeon, removed at least 99% of it according to the subsequent MRI. She has faced some challenges since the surgery, some of them post-operative complications and some of them expected neurological setbacks due to the tumor's position in her brain pressing against several of the Cranial Nerves, but she has met every obstacle with a grace and strength that inspires those of us around her.

Willa had developed stress- and steroid-induced bleeding ulcers in her stomach, and had to be taken off the feeding tube this past Wednesday for three days while the ulcers healed. She required a blood transfusion because of the blood she lost, but recovered quickly.  By Thursday night, she was sleeping peacefully - her first real sleep since she was admitted a week previously. On Saturday she resumed being fed by tube into her small intestine, and the speech therapists will repeat a swallow study this Tuesday to determine whether she has regained enough swallow function to eat by mouth immediately, or if we need to wait awhile longer.

Willa's EVD (extra ventricular drain), which drained off excess cerebral spinal fluid to relieve pressure on her brain, was removed Saturday. This allowed us to hold her and cuddle her and even let her sleep in my lap for an hour and a half! She responded so wonderfully to being in my arms; her heart rate dropped 10-15 beats per minute and her breathing relaxed too. She is off the steroids and the antibiotics now, and her craniotomy incision is healing beautifully.

Wednesday was also the day we found out the pathology of the tumor Willa had: anaplastic ependymoma. I won't go into details now, but here is an excellent site that describes the biology, presentation, diagnosis and treatment of this type of tumor (although the current treatment has evolved since this page was created). Ependymomas

Our next step is to get Willa out of the PICU before her first birthday this coming Wednesday, August 10th. She will have to stay at Kosair Children's Hospital for a little while longer, but we'll be in a private room on the seventh floor in the cancer ward. Evidently, Kosair knows how to throw quite a birthday bash! Jim and I still need to make decisions on her course of treatment once she recovers fully from the surgery, but that's a concern for another day.

For now, we are just concentrating on loving our baby girl and doing what we can to help her heal. Thank you for all your support in this endeavor. Everyone who visits can feel the love in Willa's room. The night before we went to the hospital, when we still did not know what was causing her pain and symptoms, I received a clear message that Willa was going to be just fine. I still believe that.

Willa had a brain tumor. Willa had complications after the surgery. Willa is improving every day. Willa is a strong-willed warrior who has her parents and family behind her, and a legion of angels (each and every one of you) lifting her up. Willa will be just fine.

Love, light and laughter,
Jody Held, Jim Frankenberger and Willa Rose Frankenberger