Update from Kirklin Clinic / UAB

David and Joy have had a rough couple of weeks, so Joy has asked me to update everyone for her. David finished his radiation and chemo on his birthday, October 5th. He had been tolerating the treatments without many side effects until the last 2 weeks when he became very fatigued. Even though he completed the treatments on the 5th, the radiation kept "working" for another three weeks. During this time, his fatigue markedly increased and he had some difficulty speaking clearly and using his right arm and leg. In the last week to ten days, he has suffered an even more significant downturn. He is often unable to use his right arm or leg at all, his speech is much worse and he often can not communicate verbally. He is having more seizures. He is quite nauseous and not eating much, therefore has lost a good bit of weight. His hearing is even more hyper sensitive which causes him a lot of discomfort. He is also having a lot of hip pain but we are not sure how that fits into his current diagnosis. He is getting around the house by using a wheelchair on bad days, and a walker on good days.

Today, they returned to Birmingham for a follow up MRI to recheck the status of his tumor. The MRI showed that the mass has grown from 2.5 cm to 3.7 cm, however it is unclear how much of that increase is the tumor and how much is swelling around the tumor. This does NOT mean that the radiation and chemo were unsuccessful. Had he not had those treatments, it might be even bigger by now. He was again offered the option of surgery to remove part of the tumor, but he again declined due to the very high risk of complications including paralysis and total loss of speech. The doctors are starting him on pain medications and steroids to see if any of his symptoms are caused by swelling. If the steroids improve his symptoms, that means that at least some are caused by swelling. They have been unable to increase his seizure medications because his blood work today shows already high levels of the anti-seizure medications so they are hoping the steroids will help. He is going to begin another round of the chemo pill, but it will only be once a week for 5 weeks and it will be delivered to the house. He will return to Kirklin Clinic to have another MRI in one month. Day to day living has become filled with new challenges.

The good news is that Joy, David and Emma are still quite sure that God is in control and He has been meeting their needs in many ways! The doctors are arranging whatever home health services will make his life easier. Special friends are taking care of building ramps and making home modifications as they become an issue. Emma was voted Homecoming Queen and has been accepted to Auburn University, University of Alabama and Troy University! Decisions, decisions......Emma's friends and teachers have all rallied around her to keep her busy and encouraged. Their equestrian friends have helped them with horse and trailer issues. Neighbors have flooded them with gifts of hay for the horses. They have been uplifted by many cards and letters from all over the country! They have been encouraged by the DVD's from the Cowboy Church...keep 'em comin' boys! Their church family at Santuck Baptist Church and the entire Elmore County Community has covered them in prayer and supported them in many, many ways...too many to mention. All sorts of folks have cooked and cleaned and fixed and fussed and fretted to meet their every need! And of course, their family members have especially rallied around them. Many thanks to everyone!

As David's struggle increases, they have some more requests to make to all of these wonderful people. Everyone wants to know what they can do to help so here are some requests from Joy:

DO continue the cards and letters, they enjoy those very much.

DO continue meals, but keep in mind that she has special angels that deliver a meal every Monday and Tuesday. SBC has been delivering meals on Wednesday nights, but that will end in about 2 weeks. The Men's class has been purchasing and Angel Food box monthly and that is much appreciated. Joy asks that you coordinate dates to bring food with her as she does not have much freezer space. Emma especially likes sweets! Email communication is the best way to coordinate with Joy: hillsidefarm@netzero.net

DO NOT COME TO VISIT. David would be happy to see everyone, BUT he does not want everyone to see him in his current condition. Also, he can not talk which is embarrassing and frustrating to him. You will soon see some "no visitors" signs in their driveway and they ask that everyone honor them until he is feeling better. If David is in the living area and you are dropping off food, Joy will meet you in the driveway in order to protect his privacy. PLEASE SHOW HIM HOW MUCH YOU LOVE HIM BY RESPECTING THIS REQUEST THAT COMES DIRECTLY FROM DAVID.

DO SEND JOY AN EMAIL OR COMMENT ON THE BLOG! She likes to keep up with everyone else and talk about things other than cancer. She would even appreciate a sprinkling of gossip here and there! Also, this helps her to not have to repeat the current medical issues that are so tough for them to to deal with and talk about. hillsidefarm@netzero.net

TRY NOT TO CALL as the Kirklin staff will be calling them daily with treatment recommendations and for close follow up. They need to keep the phone lines open for that.

Again, Joy David and Emma want everyone to know how much they appreciate everything that everyone is doing for them! I hope that I did not leave anyone out, but rather, know that God is showing His love through all of you!

Cathy Brown