As many of you know we will be leaving on June 2 for Southfield, MI. I thought I would send you an update and some prayer requests for our family. We know the power of prayer has sustained us through many difficult times. If you would like to add Matt to your church prayer chain or share this list with friends we would appreciate it.
April 7 we traveled to Southfield for surgery to have a tissue expander implanted. We also saw the doctors who will be involved with the upcoming surgery. April 10 Dr. Jackson placed the tissue expander in Matt’s left cheek. We returned to Fargo on Good Friday in time to be with Tricia on Easter Sunday. The expander has a tube with a valve extending behind his ear that I inject saline solution into every three days. His cheek is very large and he is now experiencing some discomfort.
There will be three surgeons involved with the 15 hour surgery on June 5. Dr. Jackson will transfer bone from his hip to his cheek and eyebrow. Dr. Topf, an oral surgeon, will pull forward and straighten both his upper and lower jaw. Dr. Ali will transplant a flap from his stomach, or use an artificial flap, to fill in the skin and fat needed in his left side. Dr. Ali’s job is the most time consuming as he will connect veins and tissue. We have friends from church who have gone to our local blood bank to donate blood for Matt which will be shipped to Southfield. They anticipate he may need two to four units during surgery. We expect Matt will be hospitalized for at least one week or more and that we will remain in Southfield at least another week or more after his discharge. Including travel time we are preparing to be away for at least 2 1/2 to 3 weeks.
Prayer concerns we have to share:
This deformity has tested Matt’s self image in a way similar to how the cancer challenged his life. A deformity can not be cured by hooking up to an IV and injecting medicine. A deformity can be mended by acceptance and positive affirmation from family and friends. Obviously, we want to do all that we can for Matt because it is so very important to him. He gives us strength knowing he will go through this to look a little more like the rest of us. Recently he was selected to represent Oak Grove in the State Golf Tournament. As I shared my concern about his safety, he in turn reminded me what we have instilled in him - that he is a healthy young man and should take in the many opportunities that come his way. He also told me he realized how strange his cheek looked with the tissue expansion, but that he could look past that and feel comfortable about being there.
Erma Bombeck in her book I Want To Grow Up, I Want To Grow Hair, I Want To Go To Boise compared cancer to being invited to a war you do not want to fight but do not have a choice. You equip yourself with the best ammunition - awesome doctors, powerful drugs, a positive attitude, and support of friends and family. We have learned this is very true. We have also learned the name we gave our son, Matthew, had meaning we didn’t clearly realize was so true at his birth. The name Matthew means a gift from God. He has been a gift that has taught us a great deal about our faith and life.
Thank you from the bottoms of our hearts for keeping us in your prayers at this trying time in our lives.
In love and friendship,
Pat, Butch, Tricia, and Matt Pobst
(TOC)
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Yesterday (Monday) the surgeon's made some changes in the prior plan for Matt. A fourth surgeon, a neuro surgeon, was added to the team. We had to make some quick phone calls at the end of the day to add him to the pre-authorization for insurance. Another change made yesterday was to postpone the oral surgeon's part of pulling the upper and lower jaws forward and adding bone from the hip it them. That surgery is now scheduled for August 16. This morning we arrived at 6:30 am and right before surgery we learned another change made since last night was to illiminate Dr. Ali's part with the free tissue flap, which was to be the lengthiest part of the surgery. Dr. Jackson substituted a different technique which he did himself.
So thankfully the surgery was shortened by more than half the time to only six hours. Dr. Audet cut open Matt's skull to pull the left side forward to even it out with the right. He used bone from the back of the skull to fuse the bones back together and to give new bone for Jackson to use in the rebuilding of the lower eye and cheek. I know there was so much more to this, however that is all this mind could take in. Both doctors felt very good about the surgery and the results, which will continue to unfold.
When I asked Matt what I should tell everyone he said to say thank you for your support and all your prayers and to send a special thank you to God. It is obvious all the support through prayer. I think that is the reason the doctors postponed and changed some of the surgery. They were very concerned about the long exposure for Matt's skull and the risk of infection. Even though last minute changes can be unnerving to us the doctors were obviously led to make these changes.
The prayer we continue is for no complications from infection. An open space was left in Matt's skull between the brain and bone. Our prayer is that the brain will now grow to fill that space as the doctor explained. (We told Matt as it grows he will get smarter, too.)
Matt is doing great however the pain is very strong and he is waiting for the pump to help with that. We will try to update you in the next day or two. We also had a good message from Tricia that she arrived safely in San Diego. All is well.
Pat, Butch, and MattOur day has been somewhat uneventful with the exception of a surprise visit from Butch's Aunt Elaine's brother, Russell. He lives an hour away (four hours if I were driving) north of Detroit. We had a very nice visit. He said he got lost a couple of times and walking up to the hospital decided to ask two nurses for directions. When he showed them the paper with Matt's name the nurse said I know him and walked Russell up to the room.
Matt has slept most of the day and is not as perky as he was last night. His head has more swelling as they said it would for the first 48 hours. He unfortunately has been unable to eat as he has had an upset stomach with vomiting since last night. Knowing Matt that is very upsetting to not be able to eat. Thankfully he was unhooked from two of the three IVs, the tubes connected to his chest for stats were disconnected, and the leg braces for circulation were removed. He is able to get up when he needs to walk in the room which is always a good feeling. His pain is still high and they changed his pain med hoping he would be less iritated in the stomach. They will take a ct scan to see if the space is filling (and the brain growing) tomorrow or Friday. I now understand the skull thing a little better. If you think of the top half of the skull and divide it into fourths. The doctor cut the front fourth on the left side. moved it forward to match the right, filled in with some bone, and connected it back together with plates made from titanium and srews. Great opportunity to have another loose screw or two. The free flap that Dr. Ali was going to do using stomach fat and muscle was done instead by Dr. Jackson. He used tissue from behind the head that he wrapped around under the ear and pulled upward to build up the cheek area. Because it wasn't totally cut away it is attached and will remain live tissue with less chance of infection than the free flap. It seems as though Dr. Jackson has a sixth sense to know how things will be best for his patients. We continue to pray he has no complications with infection. I brought my journal from 13 years ago along and it has been very interesting to read. Many things I remembered but some I had forgotten. That first summer we were separated from family and friends when we spent most of it in Rochester for surgeries and treatment. I had written many of the funny things Matt said. Two weeks after the first surgery Grandma Elaine and Aunt Cheryl took Matt, Tricia, and me to McDonald's. If any of you know my sister, Cheryl, you know what kind of direction sense she has or should I say does not have. We were following the yellow arches for what seemed like an hour when we discovered it was a big corn cob on top of a sign. We finally found McDonald's and ate and returned to the hospital. Matt said to us "Thank goodness. You guys really wore me out". And Matt has been wearing us out ever since.Butch is worried I am boring all of you with updates about Matt. I told him not to worry since email is similar to telephone ID caller and people do not have to open it up when they see it is from us!
Butch stayed the night last night and no one on the floor was able to sleep because of his snoring. As for me I slept like a log all alone in the hotel room - ten hours to be exact. When I got to the room I had the nice surprise to see the huge bandage on Matt's head had been removed and he was more alert than yesterday. He is getting up and walking some and eating more. All good signs.
Matt had a ct scan of his head to determine if his brain is growing to fill the empty space. I am not sure when we will learn the results of that test.
13 years ago today Dr. Jackson removed the cancerous tumor. I am not sure how you thank a doctor for giving life back to your son and now for giving him the gift he has wanted for the past two years.
I remember the night before his biopsy at home when we were laying in bed and he asked me if we could exchange cheeks. He will never know how often I have wished I could exchange places with him. Obviously the work God had planned wasn't a job I could handle but one that Matt has tackled and has been an example for us all.
Butch thinks we will be on the road again by the weekend. I don't like to get hopes up and have to be here longer so we'll see.
We will keep in touch.
Pat, Butch, and Matt
(TOC)
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We are on our way home!! I can't believe it. This morning as the doctor was explaining what needed to be done before we were discharged he suggested we wait until Sunday to begin driving. Butch was so busy throwing things into bags he didn't hear him. He and Matt had the 'discussion' while I was out of the room and sure enough when I returned they had decided to start out as soon as we could get to the hotel and get the rest of our things. Ten days of togetherness can be a challenge.
I hesitantly agreed. We didn't get very far, Portage IN, when we decided to stop. Matt is feeling tough although it is more his stomach than anything else. He continues to improve in his face every day. There is still some swelling and he still can't open his left eye but he looks wonderful. The doctors were amazed at his quick recovery. The ct scan also looked good with his brain moving into the open space. My brain has been looking for open space for a long time.
It is obvious we have had a channel of friends and family praying and thinking about us. Everything has gone so smoothly. I know when Dr. Jackson's nurse, Jenny, explained everything to me last summer I was overwhelmed with what Matt would endure for this surgery. I know she didn't spare details because she felt it was important for us to understand what all would be done and what to expect. I don't think a day has gone by this past year that I didn't think about this and I will admit I had a tremendous amount of anxiety. This week has again shown me the power of prayer and the importance of our friends and family. We appreciate all of you and thank you for helping us get through this hurdle. The next one should be a piece of cake and will add the frosting on everything for Matt, too. (I still hope I can talk him out of August and look at next June for the oral surgery - it will never be a piece of cake for me when I let the surgical people take him away.)
We plan on driving to Mpls. Saturday - Butch says we are getting up at 5 to get through Chicago - and home on Sunday. I feel like we were given the gift of an extra week with the shorter stay from what we were first told.
We talked to Tricia this morning and she is have a grand time - no job yet but of course she is not worried!
Talk to you all soon,
Pat, Butch, and Matt
(TOC)
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We are very eager to give you an update regarding Matt and his recovery from surgery. It has been better than we could ever have expected. Interestingly, the week we were in Southfield, MI was exactly 13 years from the day we met Dr. Jackson in Rochester, MN at the Mayo Clinic when he removed the cancerous tumor.
We left on Saturday, June 2 and arrived in Michigan the next day. Monday we met with each of the doctors and discovered some changes would be made for his surgery. The oral surgeon felt we were trying to do too much too quickly and postponed the jaw part of surgery which will be rescheduled in one year. We also learned there would be a neurosurgeon involved to help with the changes to the skull. The morning of surgery, Tuesday, we found out Dr. Jackson was skeptical of the free tissue flap, which was to be the lengthiest part of surgery, so that doctor was canceled. Dr. Jackson instead did a procedure he felt would be more successful for Matt. Many of these changes were due to the concern related to the radiation affects on blood flow and infection risks.
Dr. Jackson made an incision from his left ear over his head to the right ear. Dr. Audet cut the front, left side of the top of his skull. He pulled the section forward and out to match with the right side and reattached it with bone from the back of the skull and titanium plates. Dr. Jackson also used bone from the back of the skull to rebuild his cheek area. He then used tissue from behind his neck to fill in the cheek for a tissue flap. The surgery lasted six hours which was a long day for us, but shorter than we anticipated. They were very good to update us every two hours and each doctor spoke with us afterwards. Matt needed only one unit of blood during the process.
Matt woke up quickly after surgery asking for us and his first words when I reached his bedside were “I love you, Mom.” He then asked for his dad who was making a phone call to Grandma Elaine. He said, “Go find dad and tell him I love him, too.” Matt’s hospital stay was only four days which was also much shorter than we expected. We probably pushed things a little too quickly when we left for home on Friday when he was discharged. We stopped after 200 miles and drove the rest of the way on Saturday. Matt was miserable, but the pain medications helped some.
Getting home was in many ways the best medicine, although it has been hard to keep Matt from doing too much. He golfed in an Oak Grove tournament with his dad one week after surgery and they took second place. A local surgeon removed the 65 staples and many stitches in his head today. Once the swelling subsides and his eye opens he will look wonderful.
We celebrate the many prayers that were answered for our family. We are so thankful for friends who shared our prayer concerns and kept us in their thoughts. The day we met with doctors and learned about the many last minute changes was unsettling. I found myself doubting what we were doing to our son and actually found myself questioning their decisions. I was then reminded of the many people praying for Matt and I realized these changes were indeed answers to the prayers - I simply was not recognizing it.
We also are very thankful for the experience Tricia is having with Campus Crusade in San Diego. When we talked on Sunday she was pleased with everything and enjoying the people she had met.
I took several reading materials with me to pass the time and found the one I enjoyed the most was my journal from 13 years ago when Matt was diagnosed. I laughed and cried over the things I had forgotten over time. Matt amused us with his humor many times during his long treatment and he also was the one that encouraged us during the trying times. I wrote about the time my sister, Terry, helped me bring the kids to Rochester in preparation for the five week radiation treatment while he continued his chemotherapy treatment. As Terry stopped the car in the hotel parking lot I jokingly said, “Let’s skip this and go back to Fargo.” Matt hopped out of the car and said, “Not me, I’m here to get well!” And that he did.
Thank you for your prayers and your friendship,
Pat, Butch, Tricia, and Matt
(TOC)
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Well, here we are again in the hospital at Meritcare this time and a different patient. Butch gave us a scare yesterday but is doing well today. At 1:00 on Tuesday he called to tell me he was having some chest pains and that his arms felt funny. I told him to get over to the downtown Meritcare. As I hung up I realized I had told him to drive himself to the hospital while possibly having a heart attack, so I called back to tell him I was coming to get him. He said he was fine.
I was trying hard to not overreact for Matt's sake and decided to run errands instead of going to the ER. Well, that didn't work so I told Matt and we drove to the ER and couldn't find Butch because he was across the hall in the walk-in clinic with about 40 other people. He could have sat there for two hours or more. We moved over to the ER and they whisked him back rather quickly.
An hour later the cardiologist came out to tell us he believed Butch was having an acute heart attack and they were preparing to do an angiogram and possible angioplasty to place a stent in the artery if it were found to be blocked. One artery was nearly 100% blocked with a second artery 85% blocked. The doctor repaired the more serious one and will determine later when to do the second.
We were able to visit briefly before the procedure with Butch which was nice, however it didn't make it any easier for Matt. He had a tough time and cried a lot. At the end of the day he told me he would rather be the one in the bed like it usually is for our family.
The procedure went very well and he is being watched closely as he remains in the cardiac ICU. He should move to a regular room Thursday. Last night he had to remain flat on his back because he was given a nasty blood thinner and he still had the sheath in place in which they did the angioplasty. That was removed last night and a clamp was put on to stop any bleeding. I warned the nurses that people will think 2East is shooting off fireworks because Butch snores very loudly while sleeping on his back.
Today he experienced chest discomfort for about six hours. The doctor was considering doing another angiogram when the pain quit. He seems to feel well although he is as fidgety as a kindergartner unless he is sleeping.
Thankfully a friend called Matt to hang out today so he is getting his mind off of things here. It wasn't easy to get him to go somewhere.
We are very thankful for the timing of yesterday's events. We were planning to drive to Verona at 5:00 to spend the 4th with Grandma Elaine. As much as we wanted to be with her we are so glad this didn't happen on the road or while we were in Verona. God seems to be working overtime in this part of our world. I'm hoping it is time for a break soon.
Matt told me that in his prayers every night he has asked God to help his dad change how he takes care of himself. Prayers are answered in strange ways. I believe this will be a great wake-up call for Butch to take better care of himself and will also give me a boost to get back to my exercise, too. Please remember Matt and Tricia in your prayers as this has been a scary event for them and of course for Butch to have a quick recovery.
As for me I am just trying to stay above water,
Pat
(TOC)
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Butch was in the cardiac ICU for three days. We got him home yesterday but not until he had several good lectures on diet, exercise, and smoking. He has made some serious promises to himself to make these changes. I pray he has the strength to continue with all of this.
He will not be at the reunion but Matt and I will be there.
Pat