Tuesday, June 23, 2009

Speech Visit Results

Hi! We are packing and getting ready for our trip since we leave tomorrow. Before we go, I wanted to let you all know how it went at our visit with the Speech Pathologist today.

Dr. Kauffman was a very nice woman with a lot of positive news for us. She listened to Steve's medical history and asked questions to clarify everything. She remembers Dr. Grist speaking at the "tumor board" meetings about Steve. After examining Steve, she told us of the process she would like to take to help him.

She explained that some of the swallowing issues could be from delayed response to radiation therapy. She said she has known patients who have had problems with swallowing 10 years after radiation. That was interesting to know. Anyway, no matter what the reason, at this point Steve needs to start with swallowing exercises to strengthen his unused muscles. Dr. Kauffman was impressed with how much flexibility he has with his jaw and tongue already. Evidently he has been doing stretching exercises on his own and they have really helped!

She taught him several new exercises to do each day. She also taught Steve how to swallow some water. (Although he says he would not really call it swallowing.) So, before we left the office he was able to swallow small sips of water! She says its okay if the water gets in his lungs because they can absorb it and it is just water. These small sips will help his swallowing muscles get stronger.

We will go back to see her in about 2 weeks. She feels that eventually Steve will be able to swallow again. She also thinks a prosthetic for the roof of his mouth is a very good idea and would help Steve with his speech and maybe his swallowing. That is a ways down the road, but it is so nice to have reaffirmed hope! Thank you for your continued prayers! Patience is the key in all of this : )

Friday, June 19, 2009

Friday, June 19

Hey! I don't have a whole lot of new stuff to say. Steve is doing fairly well. The heat is really slowing him down, but that is normal for all of us. We have an appointment to see the speech pathologist on Tuesday, so we are interested to find out what she has to say.

We are gearing up for a much needed vacation. A good friend of Steve's has loaned us her condo at the beach! So, we are off for a week of recouping and reconnecting while we get away from reality. Boy are we looking forward to it! To me there is nothing like the beauty of the ocean or the mountains to remind me to "Be still and know that I am God (Psalms 46:10)".

Have a very happy Father's Day everyone!

Friday, June 12, 2009

Friday, June 12

Hope you have had a good week. The weather here has been pretty nice. Steve has kept busy with the yard and with some work. His roofing business has done fairly well this week. Some friends, neighbors, and church family have been kind enough to give him some jobs. This has really been good for him physically and mentally. (Although he has lost 4 pounds this week - he is pushing himself a little too hard I think.) Thank you and may God bless you for helping him out in this area!

Good news about our friends the Mikkelson's. Emily's surgery was not as serious as they originally thought it would be (she will need the more serious surgery in about 3 or 4 years). Her operation was successful and she has already been released from the hospital! Praise God. She is already feeling better than she has in quite awhile. Such a sweet, brave young girl (only 12 years old!). Continue to pray for her recovery.

Becca left today for a church beach retreat. She was soooo excited - her first time to get to go on this annual trip. Of course my last words to her were, "I love you! Make good choices." The mother in me comes out : ) She laughed and gave me a big hug! She is a good girl (and so patient with me - ha) I pray she will have a good time. She deserves some time away from this crazy household!

Steve and I hope to see the speech pathologist some time next week. She seemed very optimistic about being able to help Steve. She said she would start by doing a swallowing study. I have had a similar test before when dealing with my stomach issues. I reminded her that he cannot even swallow his saliva and she mentioned that she would need to meet and evaluate him first then and decide from there the next step. We are hopeful that she will have some good ideas and advice for us. We are just waiting for her assistant to call and give us an appointment right now.

I have decided that the insurance companies are out to test my patience! After sending in a second appeal (marked "urgent" as instructed by one of their agents) for Steve's formula, they still have not made a decision. They are also balking about paying for some of Steve's surgery. Both Dr. Grist and Dr. Roser are trying to help us with these issues. Then last week I started having to deal with my dental insurance about Alli's braces and my teeth cleaning! Ugh! If you don't laugh about it, you cry - right??

Each time we start to feel sorry for ourselves, we are reminded how fortunate we are. For example, at the dentist's office we met a 2 year old little girl who is blind and has cancer! Can you imagine? I was talking to a cashier at Wal-Mart who has a son with major medical needs and another child with downs syndrome. She was telling everyone "God is good!" My devotion today said to thank God for each problem you encounter in your day and watch to see how he transforms trials into blessings. Amen to that!

Monday, June 8, 2009

Busy week and weekend

I don't know about you, but we really enjoyed the beautiful weather this weekend. Steve was outside most of the time, working in the yard and the gardens. We pretty much finished his pond in the back yard. That was some hard work - carrying all the concrete pieces to him so he could arrange them around the pond. He mowed the yard, whacked weeds in the front yard, and used the blower to clean it all up. I mulched around his roses that he has planted so far. This morning we are sore and tired! Steve really overworked himself, but if I have learned anything in this 12 year battle it's that he heals by pushing himself. Today I will try to keep him inside, resting. Wish me luck!

We had a busy week with all the doctor's appointments for Steve, the girls and I. Dr. Grist, the oncologist says Steve's mouth is healing very nicely.  He is pleased that he can understand Steve's speech. He ordered a CT scan to have as a new baseline, so we took care of that on Friday. We will return to see him in 3 months.

Dr. Roser, the oral surgeon was also very pleased with the healing process of Steve's mouth and jaw. We discussed with him the implant procedure and also talked about the prosthetic for the roof of Steve's mouth. He thought that was a good idea. Both doctors suggested we speak with a certain speech therapist and see another doctor who will be more knowledgeable with the prosthetic and helps with the implants. I will work on setting those appointments. 

We will return in August to see Dr. Roser. He feels like he can begin the implants in August or September. That will be a longer process than I realized. They will put screws in Steve's bones inside his mouth. Then those will need to heal for 4 - 6 months. After that they can put the teeth in. So, it looks like this is going to take much longer than we anticipated. 

In the meantime, Steve continues to have the most pain from his leg. It is a constant source of swelling and throbbing. His jaw tingles, but the pain is minimal. Everyone says Steve looks great! He does. He has good color from working outside. On the outside you really would not know anything is wrong with the exception of his limp. He teases me for telling all the details of what he is going through, but I want to make sure everyone knows what he is struggling with each and every day. He is a strong man, but he continues to need your prayers for healing and strength. He still has a long road ahead. 

Many people want to know his prognosis. No one seems to have a magic answer to that question. We can only pray that the cancer will not return. I discovered this week that I have misunderstood some major details regarding the prognosis. I got it in my mind that the jaw cancer was causing the tongue cancer and since the removed it the cancer might be gone. However, I was wrong. According to the doctors, the tongue cancer caused the jaw bone cancer. They are two different types of cancer. The tongue cancer can come back. Only time will tell. Right now I am focusing on Steve's healing and on the hope that the chemo will hold off any new cancer cells. At least for now. My dentist of over 30 years meant well when he told me "you know the prognosis is not good for Steve's kind of cancer". Sometimes we do need to hear the reality, but we have to remember to hold on to our faith and hope, knowing God has the master plan and will be with us each step of the way! 

Wednesday, June 3, 2009

Wednesday, June 3rd

Good morning. Just wanted to give you a quick update for today. We are all settling in to our summer mode of relaxation and spending more time together. So far, we have not gotten on each other's nerves too much and the girls have only complained slightly of being bored - ha! We have lots of little projects to do around the house, if we get in the mood to complete them : )

We went to our dentist's office on Monday. He was very interested to see the results of Steve's surgery. They discussed things he might want to talk to Dr. Grist and Dr. Roser about regarding tongue movement and teeth implants. The dentist, Dr. Rose, was able to help Steve with one thing. You see, when they did Steve's surgery in January, they used the leg tissue in his mouth to replace the tissue they removed with his jaw. So, guess what? The leg tissue is growing hair in his mouth! The hairs have gotten so long that they tickle and irritate Steve's throat. So, Dr. Rose trimmed the hairs. Afterwards, he told Steve that in his 40 years of dentistry he had never done that before. Nothing like going to the dentist and ending up getting a "haircut" : )  (Steve says it really has made a difference!)

On Thursday we have a check-up appointment with Dr. Grist (Steve's oncologist). Then on Friday we will see Dr. Roser (the oral surgeon). I will let you know how it all goes.  

Have a great day!