MATTHEW PRINCE - Full E-Mail update record...
(Part 1 of 3, Click here to go to Part 2)
This is the complete e-mail record of our journey with Matthew’s brain tumor from the first phone call from the Dr through the diagnosis, surgeries, radiation, recurrence, and continuing chemotherapy. At points in this collation of our thoughts our emotions are on the edge, or perhaps even over the edge. It is where we were and where we are depending on normal emotional fluctuations that we are feeling at the moment. God does not change, but our emotions have been riding a giant roller coaster and our hearts have fallen out from time to time on the full inverted loops. Some have shared that our thoughts have been a source of encouragement. May each one who reads be strengthened in their walk... (This was edited as I posted this to the church website)
6:05 AM Friday 2/4/2005
Anita and I arrived here in Nashville at about 4:00 a.m CST. Matthew has had some numbness in his right leg for a few days. We did not get all that concerned since he has had some minor back problems off and on for a year or so. Thought it was probably a pinched nerve. In any case, for several days the situation did not improve. He went to the VU Clinic yesterday, no, Wed. Went back Thur for apt with Dr and they sent him straight to the VU Med Center. CT Scan revealed
some kind of unspecified "abnormality" in upper left quadrant of brain. The Neurologist at VUMC called and gave us the report and suggested that we should come to Nashville. We are here. We do know that they have also done an MRI since our last conversation with Neurologist. She is dealing with more critical situations right now, so we have not seen her yet this AM. Anita is in the room with Matthew, I am in waiting room down the hall. Hope to speak with the Neurologist as soon as she is available to get a prelim opinion on the MRI. Was pretty impressed with her based on several earlier phone conversations. Will let you know more as soon as possible.(NOTE: Andrew (15) is in Dahlonega. Anita’s mom and sister are staying at the house with him.)
9:44 AM CST Friday 2/4/2005
General e-mail sent out to family and friends for whom we had e-mail contact info with us.
Please pray for our 18 year old son, Matthew. He is in his second semester at Vanderbilt University in Nashville. He is an exceptional young man in many ways. Matthew has had some numbness in his right leg for a few days. We did not get all that concerned since he has had some minor back problems off and on for a year or so. Thought it was probably a pinched nerve. In any case, for several days the situation did not improve. He went to the VU Clinic Wed. Went back Thur for apt with Dr and they sent him straight to the VU Med Center. CT Scan revealed some kind of unspecified "abnormality" in upper left quadrant of brain. Neuroligist suggested that we should come to Nashville. Anita and I left Georgia a little after midnight EST arrived here in Nashville at about 4:00 a.m CST.
We found out that the MRI done during the night has more clearly identified the mass. It is four by six centimeters, roughly 1.5 by 2.5 inches. They are going to do a biopsy to get a better idea of what we are dealing with later today, or in the morning.
We will keep you posted. NOTE: I will also post updates on the web at this prayer request link
http://www.baptistboard.com/cgi-bin/ultimatebb.cgi/topic/26/1965.html?
All will be able to read updates at this link, but not reply unless you register on the board.
Reply to me directly at rjprince@alltel.net
Please keep our son in your prayers, and us too. Thanks.
PS - Family and close friends, we love you and appreciate your prayers. It is just not possible to call everyone with updates. This is a bit generic since I am sending it out to quite a few people. Please understand that the "form" appearance of this is no indication that any of you are less important, or less deserving of more personal contact.
Thanks all for the prayers. Keep on.
Friday Afternoon
The Drs are now using the word "tumor" and words like resection (surgery) and radiation and chemotherapy. It does not appear that they will do a biopsy. It now seems that the MRI pictures are clear enough to make a biopsy an unnecessary. We have met with a couple of neurosurgeons and now are waiting to meeting with the head neurosurgeon in the group and the oncologists. It does not look like surgery is likely this weekend, but it is a definite possibility for the first of the week. Not confirmed yet, but a possibility. My wife’s sister had a smaller brain tumor removed 13 months ago and underwent radiation and chemo. It has been a very difficult recovery and rehabilitation. All of these things are in our thoughts as we ponder the uncertainty of the future.
Saturday 1:50 a.m. - 2/5/05
As we met with the head neurosurgeon in the group this afternoon and heard him use terms like “quality of life” and 12 mos vss 18 mos or vss 24 mos the seriousness began to hit us at a much deeper level. (NOTE: THIS WAS NOT A SPECIFIC ESTIMATE REGARDING MATTHEW. AT THIS POINT WE DO NOT HAVE ANY KIND OF POTENTIAL TIME FRAME.)
We all expect to watch our kids grow up and give us grandchildren before WE die and they bury us. This is the “natural order” and progression. Anything less is very strange and very wrong. Not many months ago I was commenting to the church family on the blessedness of not ever having had to perform funerals for any children in our church families down through the years. I have a very tender heart and a great love for the “little ones”. Have often contemplated the difficulty of laying a child under my watch-care to rest, but have been spared that heartache. Now, when the words “brain tumor” and “child” are used in the same sentence, this news wears the face of my own precious second born. We know that God’s grace will be sufficient we just very much do not want to be in the position of needing it so badly. As I hugged Matthew for a while this evening/morning, I again affirmed in my heart and shared with him my wish that I could somehow transport the tumor from his body to mine. I would ever so gladly take this thing into my brain to spare my son. I have often felt this whenever they have been sick, but never to such a consuming and overwhelming degree.
(NOTE: Initially just shared this with close family and best friend, but now sharing with all)
Feb 5, 2005, Sat 12:54 p
It was good to go to bed last night, early this morning for the first time in two days. The efficiency apartment VU has made available is on the ground floor of one of “The Towers”. It is almost like a nice motel suite, except the sofa does not make into a bed. One of the head residence managers loaned us an inflatable bed for Matthew which we have set up in the living room area.
We have had a bit more time to absorb all of this now and it is not any easier. Woke up a few times through the night with periods of deep uncontrollable sobbing. Anita and I just held each other and wept together till we fell back asleep. Anita got up at mid morning and laid beside Matthew as he called friends and updated them on his status. Matthew has established close friendships with several of his High School teachers and spent some time talking with them as well. One of his “gifts” is that he loves others very deeply and sincerely appreciates people for who they are without making any demands that they change to fit his views or life philosophies. In return, he is deeply loved by many folks. In this we are very blessed.
Matthew wants to continue the semester if there is any way possible and so far, the Drs. have not closed this as an option. We will be in a better position to evaluate the likelihood of this after the consultation on Monday and then after biopsy/surgery on Friday. They have scheduled surgery for Friday, we are just not sure what they will be doing yet. Matthew is also scheduled for a special type of MRI for the first of the week as well. The MRI spectroscopy reveals the chemical composition of the tumor. Hopefully, this additional diagnostic tool may shed a little more light on the best course of action.
Today we are just spending time together and with a few of Matthew’s close Vandy friends. Continue to pray, will send occasional updates, but will post on web prayer link as well.
http://www.baptistboard.com/cgi-bin/ultimatebb.cgi/topic/26/1965.html?
Feb 5, 2005, Sat 2:41 p
WOAH.
Need to clarify something. Sorry to have alarmed anyone without a more clear word from the Docs than what we have.
When the neurosurgeon used the words “12 mos, 18 mos, and 24 mos” he was not setting a time for Matthew. He was comparing the POTENTIAL differences in some cases between surgery, radiation, and chemotherapy. I have not had a lot of sleep in the past few days and did not communicate clearly. We have not had ANY kind of an estimate like this yet.
On the other hand, when the Doc used those words I am certain that it WAS his intent to stress the seriousness of the situation.
Again, sorry for any undue stress from my unclear wording.
Thanks to all for the prayers.
Feb 5, 2005, Sat 3:11 p - for web post
Thanks to all for continued prayers. The VU staff has been quite helpful. We have been told that we can stay in the apartment here as long as needed. The outpouring of love from so many has been overwhelming. This is good since the negative emotions have also been overwhelming. God is good. We know this. We have lived and experienced this all of our lives. We know that everyone in life experiences tragedy, suffering, and sorrow at some point. That is why someone (can’t recall who) called this life a “veil of tears”. Last night was rough, Anita and I woke up through the night with bouts of deep uncontrollable sobbing (both of us). We are processing it all and just spending the day together today.
Look forward to worship tomorrow with Matthew’s church family here in Nashville. If I was home probably could not preach anyway. Having difficulty forming and speaking complete sentences at times. God knows.
In the midst of his discussions with his friends, Job said, “though He slay me, yet will I trust him...” (Job 1315). I have often reaffirmed this level of personal commitment to the Lord for myself. Yet I do not at all understand how Satan could have thought that “touching” Job physically could have in any way been more traumatic, hurtful, or “faith challenging” than losing his children in chapter one. Only that Satan was never a father. I am again reminded afresh and anew and in different ways, of the depths of God’s love in that He would give His Only Son for us.
Feb 5, 2005, Sat 7:10 p
We all went to Target (Department Store) to pick up some stuff. Two of Matthew’s friends tagged along. He is a trooper. It is difficult to watch him walk and have to kinda drag his right leg along. He looks a lot like a stroke victim. But, at this point, bottom line is if that is as bad as it ever got, we would be happy. At this point we are just not sure what is ahead. Again, keep us in prayer, and thanks.
Feb 6, 2005, Sun 4:45 p
Worship was very good this a.m. We had a much greater sense of need than usual. We went to Matthew’s church (combiblenashville.org) and once again were overwhelmed with the love and support of God’s people. The message was very good and the fellowship was great. Through our tears we were once again reminded of God’s grace in the midst of difficult times. Matthew seems to be having a little bit more difficulty walking. He is maintaining a great attitude and when asked how he is doing, he tells everybody that he is handling this all better than Mom and Dad. I have to agree that it certainly seems that way. We are thinking about some alternative therapies. Anyone who has any personal experience with the ideas and therapies of [B]Hulda Clark[/B], please contact me at rjprince@alltel.net.
Feb 7, 2005, Mon 8:38 a
With all the phone calls and conversations we have had I thought I had put more detail regarding the location and size of the tumor on the e-mail updates and prayer link on the board. Late last evening it was brought to my attention that these details had not been shared broadly. Here are some specifics.
The tumor is 4-6 cm, 1.5 to 2.5 inches, larger than a golf-ball and egg shaped. Part of the tumor has fairly consistent composition which would normally indicated that it is benign. Part of the tumor is of inconsistent composition which would seem to be an indication of malignancy. There is very little (almost none) indication of localized swelling in the brain in the area surrounding the tumor, this seems to be an indication of very slow growth. The tumor is not exposed. It is down inside the brain, but not really deep. The neurologist said he did not think that surgery to remove the tumor (resection) was an option, but that the neurosurgeon would talk with us more about that possibility. When we talked with the first two neurosurgeons they said they felt that surgery was an option but that the senior NS would make that suggestion. They are also going to do additional MRI’s to “3D Map” the tumor and to provide spectroscopy.
There is a some discussion between the radiologist and the senior NS as to precisely what areas of the brain are “involved”. As we (Ray, Anita, & Matthew) looked at different approaches to the tumor on the MRI’s with the NS, over and over, it seems that the radiologist was less precise in his statement of the actual areas involved. All agree that it is either very near, or in the dominant hemisphere of the brain controlling right side of the body movement and coordination (related to the symptoms experienced as well). It is either very near or in the area where language skills are retained, math skills, and speech skills. All of these (movement, language, math, and speech) are very much at risk with any treatment at all (resection, radiation, or chemotherapy). All of these treatments run the risks of leaving Matthew paralyzed (fully, or partially to various degrees) on the right side, loss of the ability to speak, loss of language ability, and loss of math ability. Academically, Matthew’s double major is Spanish and French. While in High School Matthew took three years of French and Spanish at Lumpkin County HS, and he took intermediate French, intermediate Spanish, and two semesters of German at North Geogia College and State University while jointly enrolled in HS and college, his senior year of HS. He also took Calculus 2 at NGCSU his senior year. Three of these advanced classes required special permission for a freshman. While jointly enrolled he made the Presidents List with a perfect 4.0 and as a Senior in HS/College Freshman, his peers elected him President of the NGCSU German Club and he had a role in a French play. Languages are his passion. He could also shows great potential in the field of Mathematics. He was very involved in “Mock Trial”, a program that familiarizes HS students with the legal profession. He enjoyed this greatly as well, in fact he has wavered back and forth between linguistics and international law. His current educational track still leaves either option available. One more factor, Matthew is quite an accomplished pianist. His last few years of piano were taken under Dr. Joe Chapman at NGCSU because his regular piano instructor (with a master’s in piano) told us that he had taken Matthew as far as he could. As a High School senior, Matthew performed a “Senior Recital” at NGCSU at or very near the level of a college senior recital.
If it sounds like I am bragging, sorry, but I probably am. Hence my earlier statement that Matthew is an exceptional young man in many ways. YET, the tumor and all courses of treatment place all four of his strengths and passions at risk – languages, math, speech, and piano.
The senior neurosurgeon feels confident that the tumor can be safely removed and that this is our best option at this point. He will discuss his plans at a “presentation” with the whole team of Docs sometime today. Based on this meeting they will make recommendations and discuss options in a later meeting with us.
As already stated, the support from family, friends, and members of the family of God that we have never even met, has been OVERWHELMING. Praise God, this is what we needed, for the circumstances have been quite overwhelming, way more than I could ever express. THANKS TO ALL FOR YOUR PRAYERS! Keep them up.
Feb 8, 2005, Tue 8:23 a
Last evening (Monday) we met for about an hour and a half with the neurosurgeon (NS) and one of his nurses. His name is Kyle Weaver and he trained at UNC Chapel Hill and had a fellowship at Johns Hopkins in Baltimore. We have been very impressed and all of us have full peace (Col 3:15) that we are where God wants us for this procedure (Vanderbilt). He has forwarded MRI’s to former colleagues in both NC and MD for their input on the best course of action to pursue in Matthew’s case. This is not due to any lack of confidence on his part, however. He told us in our first consultation that he felt that resection was the best option. He just happens to agree that there is wisdom in seeking multiple counsel. After considering their input and the discussion at the “Tumor Board” meeting yesterday morning they have recommended surgery. The size of the tumor puts it beyond the scope of radiation therapy as a primary option. Because it is so large and because it is producing significant motor impairment at this point, resection (surgery) is about the only option.
Matthew went to two of his classes yesterday and will go to one today. Medical procedures of course get priority and he has two more MRI’s today (F & S, I think). He will do pre-op tomorrow, and then another MRI (green lifesavers!) on Thursday. The plan is for him to be admitted to the hospital Friday morning and start the procedure around 8:30. The surgery is estimated to take about 6 hours, but could be more or less depending on what the preliminary pathology indicates and depending on the degree of brain involvement in the tumor.
At this point, there is general agreement (among surgeons, radiologists, etc) that the tumor is not in an area that places language, math or speech at very great risk. What is at risk (10-15% rough estimate) is motor skill and sensation on the right side of the body and face. They will use sensors and probes to monitor and test brain activity as they go in an attempt to prevent loss of motor function, but this seems to be the projected area of greatest risk. Upon learning that his language skills do not seem to be at imminent risk, Matthew was greatly relieved. Ever since getting over the initial shock (which he also seems to have handled better), Matthew tells everyone he is taking all of this much better than Mom and Dad. He’s right. His spirits are high and his determination to finish out the semester is strong. The church family has been very supportive and seems to understand that my place is with my son at this time. The faculty and administration at NGCSU has been very supportive as well, assuring Anita that they can handle her classes for whatever time is necessary. For those who know Anita, it comes as no surprise that she is willing to give all out to try to meet the needs of both her family and her students as much as possible. To the degree that it is not possible, family, our course, is first.
Family and friends are traveling to Nashville on Thursday, pray for their safety as well. Matthew’s sister Ashley will be driving up from PCC in Pensacola, FL, specifically pray for her safety on Thursday (early morning through early afternoon). Anita will be coming back on Thursday as well, with Andrew (I drove her home last night and arrived back in Nashville at around 5 a.m.). She felt that she needed to teach a few of her classes and to get material ready for a week or more of her absence. Pray for Matthew during the procedure, the surgeons (Dr. Kyle Weaver and others on the team), nurses (Tasha is one name), and God’s peace for the family as we wait. They project that he will be in Neuro ICU for about 24 hours following the procedure and then to a regular room on the Neuro floor for two additional days. They are anticipating releasing Matthew on either Sunday or Monday, depending on outcome. They have also discussed possible in patient rehab if needed.
So many have asked what they can do. First and foremost, pray. Anything more is quite secondary. Some have offered help in other ways and that is certainly appreciated, but prayer is what we need most right now and so that is our primary request.
Again, thanks for all the prayers to this point. Without the Lord and the support of the “family” I do not know how we would have made it.
Wed, Feb 9, 2005, 1:06 am Central Time
Matthew went to two classes on Tues and they went well. His friends on campus are expressing a lot of concern and giving great support. We are noticing that his right leg is become less useful. It is almost like an artificial leg at this point. Color is OK, blood circulation is OK, but there is very little feeling in the leg and he has very little muscle control over the leg. He is beginning to experience some loss of use in the right arm. I have been transporting him around campus and the hospital in a wheel chair. We are hoping and praying that the surgery and rehab will restore full function to his right side. Continue to pray.
Wed, Feb 9, 2005, 8:46 pm Central Time
Matthew again went to two classes today (Wed) and is determined to do all he can to continue the semester. The support he is receiving from his professors is incredible. On Tuesday at supper, one of the dining hall managers was talking to the cashier as we were checking out. The cashier looked at us and instead of giving us the price, smiled and said “Thank you”. The manager said, “Enjoy, dinner is on me tonight!” Same thing happened at lunch at a different restaurant on campus. All we can say is “Thanks”. God is so good. The university has provided for housing, temp handicap parking permits, etc. And, they keep calling to see if we need anything else.
I think of our experiences with the Christian institution where my daughter is a senior and wonder if maybe they should spend a few days on this campus to see the amount of love being poured out from this secular university. Vanderbilt is asking, “What can we do to help you in this time” and the Christian institution is saying, “I understand that your son will be having brain surgery Friday morning, but we do not think we can let Ashley leave until early that same day.” I replied, “No, she will be leaving early Thursday morning.” Office lady, “Oh. Well if you insist...” Unbelievable. Her experience there has been a real education for all of us about what the Love of Christ is NOT.
Matthew’s motor ability on the right side is still deteriorating. Friday will not come too soon. Many family members are on the road traveling. Everyone should be here by 7:00 p.m. Thurs evening. Pray for their safety.
After a bit more reflection on my comments re my daughters college, I do need to mention that there are some wonderful believers there who have been a great picture of what God's love IS. And my daughter has made some wonderful friends among the teachers, instructors, and other students. The administration does not accurately reflect the compassion of many of the teachers, students, and others who are part of the institution.
Thu, Feb 10, 2005, 10:29 am Central Time
Thanks to all for continued prayers. I have been trying to send back at least a brief note of thanks to all who write, but expect that I am going to drop some of these e-mails over the next few days. I am reading them all, and will get back to responding hopefully in few days, but for now, just know that your words a great encouragement and keep writing. Thanks for your understanding in this.
Also, you may note that I am now putting your name or email in the subject line of personal (not bulk) e-mails. The mail servers or some other web security settings here at Vandy are preventing me from sending through outlook express. I am sending mail through my web based e-mail and sending a cc or bcc back to myself so I can keep up with who I have written. That is why some of you are starting to see your name in the subject line.
Matthew plans to go to one more class today. Afternoon pre-ops, MRIs, X-Rays, etc have prevented his attendance to classes after two PM all week. He worked on a paper for philosophy a good while last evening (actually this morning), but could not get the words to flow. This is pretty unusual for him, he is generally quite the writer. We are wondering if it will get better after surgery. Just waiting on the Lord.
Family is traveling even now, remember them to the Father. He is faithful.
Thu, Feb 10, 2005, 12:55 pm Central Time
NOTE: Matthew was not able to attend his Philosophy class today. I told him that if he worked at an orange juice factory, he would get canned. Can't concentrate! Sorry, it seemed funny at the time, and God knows we all need to laugh a little bit more, don't we.
Fri, Feb 11, 2005, 8:54 am Central Time
To all,Matthew just went back for surgery. Dr is Kyle Weaver, nurses are Tasha, Sandra, and Terri. Others will be helping as well, but these are the names I know. Matthew's Nashville, Pastor was here and waited with us for a while and led in prayer. The church family at Community Bible has been very supportive.
I will pass along updates throughout the procedure as we learn anything.
Thanks for your love and prayers,
Fri, Feb 11, 2005, 2:39 pm Central Time
So far, everything is going well. Nothing more.
Ray
Fri, Feb 11, 2005, 6:05 pm Central Time
I wish it were possible to call all of our loving friends who have supported us in so many ways. We tried to call some that we did not get hold of. If you are reading this in an e-mail it is in no way an indication that you are less important or less loved that the few that we did speak with by phone. Thank all of you for your many heartfelt prayers for Matthew.
Matthew came through surgery well. Recovery took a bit longer than thought since they figured anesthesia based on the average 18 year. Matthew has never developed a conditioned tolerance to alcohol or narcotics and so he took longer than anticipated to wake up. BUT, when he woke up he was doing very well. The Doctor asked him if he could count, and since Matthew knew that the Doc also spoke German, Matthew started counting in German, and did not want to stop counting in German! The ICU nurse told us that he and the doc had been conversing in German. When we got to the room we asked about Spanish and French and his mom and sister confirmed that his Spanish was just fine and we assume that French was OK as well, but we cannot confirm. Sure sounded like his French was OK from what we could tell.
Doc said that neural pathways all seem to be unaffected by the surgery. We should expect some weakness in the right side for a while. We may need to talk about PT but not sure at this point. The tumor was much larger than expected, about the size of an orange. Because it was so large the left side of the brain is sunken in. That should be short term and there is no real problem with this.
Bad news. The doc could not get all of the tumor. Got the biggest portion, but could not tell where bad tissue ended and damaged tissue that may recover began. It was a level 4 glioblastoma (sp?), the most aggressive and most malignant type. It is a primary brain tumor and there is no cure. There is treatment, but the stats as far as averages go are not encouraging. Doc said that Matthew is very likely to do much better than average since averages often include 65 year old patients with heart problems or other as well. He could not give us any kind of estimate, but he did say that some level 4 gbm patients that he has worked with have made 8-10 years and are still doing well. The average is much less, but Matthew is so far above average in just about every other way that we are not thinking about averages.
Thanks to all for prayers. God is good, all the time. The fact that we have no idea why He has allowed this and what is next does not change our confidence in His love and purpose in our lives and in Matthew’s life. We have walked in the light too long to fear the darkness now. We have read of the eternal light that awaits in glory to stop trusting in Him. Our hearts are dark, but there is light ahead, and it is the sure and certain light of His eternal glory. This will be our focus during these dark days. To be sure, we will see the darkness. Certainly, we will have moments of deep sorrow and uncertainty. But the steadfast love of the Lord is not in question and it is not in jeopardy. He love is sure and His grace is sufficient. We trust in Him.
The love and support of the Body of Christ and the Vanderbilt family has been totally overwhelming. The notes that so many have sent have been a great encouragement. Will reply as possible.
We are going to eat supper with the family as Matthew is in ICU and we cannot see him right now anyway. Will write more later.
I cannot recall if I sent this last night or not. If you get the first half of this twice, sorry.
Fri, Feb 11, 2005, 10:40 pm Central Time
Thanks to all, and yes our hearts are crushed. The doc suggested that we not tell Matthew until tomorrow. Anything we tell him within 12 hours of surgery is likely to be forgotten. Doc Weaver was great for us. It was obvious from his manner of communication, that his heart was breaking with ours.
The doc stopped by to check in and Matthew asked questions about his condition and what the tumor was like. Doc said, “Lets get you rested up this evening and we’ll talk about that tomorrow.”
Matthew sat up, well, raised up the head of the bed and ate part of a popsicle. He also drank some ginger-ale. It was good to see him use both hands, even though weak. Pretty incredible that they can resect a brain tumor the size of an orange and that the patient can hold a popsicle less than six hours later.
Pray as Matthew gets the word tomorrow. We have no idea what time the Dr. will come in for rounds. We will all meet together to hear the news and talk about options.
Sat, Feb 12, 2005, 11:27 pm Central Time
The Doctor met with Matthew early this morning before the 9:00 ICU visiting hours and gave him the news. Thought we would all be together. The asked if Matthew wanted to know the results of the surgery, Matthew asked, should we wait for Mom and Dad? Doc said, you are 18, if you want to know I will tell you. I got there right at 9:00 and Matthew and I talked a while before Anita and Ashley arrived. Words are unable to convey the depth of emotions that we have felt over the last 30 hours. To have our worst fears come upon us is an awful thing.
We are thankful that Matthew did well today. He was moved to a regular room. He is talking and thinking clearly. He has full movement, but not strength and coordination. The degree of sensation that he has will be better revealed as he will probably have to try to walk tomorrow I expect. I feel pretty sure that Anita and I will stay with him most of the day.
Praying is difficult. I am not angry with God. I know we live in a sin cursed world and that sickness and disease are the consequences that we all pay for being sinners. I understand that faith in God does not make His children immune from pain, suffering and sorrow. Yet, emotional I am feeling very drained and spiritual I feel as dry as the desert at times. I know that God is in control. I know that He loves us. I know He loves Matthew. I know that somehow through all of this we will grow and be drawn closer to Him. I know that somehow He will be the glory from all of this. I FEEL that this is all wrong. I am comforted to know that we walk by faith and not by sight. I have often said those words. They have never been tested to the degree that they are now. I am comforted by the words of Scripture that one day all suffering and sorrow will forever be wiped away.
Sorry for not getting an update out sooner. It has been difficult to write and words are so inadequate. I know that many of you have felt this as you have tried to convey your love and concern to us in words. Language is not adequate for the task.
Thank you all for your prayers and loving thoughts. Keep praying.
Sun, Feb 13, 2005, 5:10 am Central Time
Throughout this evening along with all the feelings of helplessness and yes, hopelessness and despair, God is bringing to mind many of the things I have read in His Word down through the years. I have not gone to look them up yet, so my recollection may be weak at points. I recall that the Psalmist (pretty sure) speaks of God keeping our tears in a bottle. I am reminded of Jesus weeping at the tomb of Lazarus. We are not told why He wept, only that He did. Several ideas have been advanced to suggest a reason, personally, I think He wept because His heart ached with the ones who were hurting. There certainly may have been other reasons, but I think this is primary. We have cried more that I have ever cried. When Grand-dad died, we cried a lot. When Grand-ma died, we cried a lot. Those two have been my greatest losses so far in life. Yet they had lived long full lives and so many of my best memories involve them. I used to spend weeks and weeks with them in the summers. Their loss was great, but it was expected, it was natural. Matthew is doing well for the moment, considering that they just cut open his skull, almost as one would open a pumpkin, and removed a tumor (most of it anyway) the size of an orange (in the Docs own words). He is still with us, but the potential of his loss hangs over our heads, no, over our hearts like the mythological sword of Damocles (sp?). My eyes are dry. We have cried in the waiting rooms, on the sidewalks, in the apartment, through the night, as we lay down, as we wake up. Before the surgery we cried with Matthew. Now we are trying not to cry in his presence till he wants to cry. The surgeon said we need to put on a happy face. Yet, as he gave us the news of the level of the tumor he shed a few tears with us. There is a time to cry. When will it be time to cry with Matthew again? We are crying alone, with the rest of the family, with our friends, with just the immediate family, it seems at all times. When do we hold Matthew and cry with him? I am sure that God will let us know. (Anita is stirring in the bed, I wonder if I keep writing or if I hold her and cry some more. If she speaks or indicates she is awake, I will stop for now and come back later.) My eyes are sore and dry from crying and they feel very good compared to my heart.I remember reading something by Maxwell, and preaching some it as well, about Spiritual dryness and how it is a normal part of out Christian experience to go through times of dryness in our walk with God. I can not say if that is what we should experience, only that it is what we are experiencing. I am certainly willing to concede that some may walk so closely that they always feel well watered, but this is not always my personal experience. I am also willing to admit the weakness and sinfulness of my own heart and that my dryness is not due to any His lack of faithfulness or provision, but perhaps more than anything, the sinfulness of my own flesh. I recall reading of how cowboys in the west who traveled across some sections of the desert knew where small seeps or basins were that would only have enough water for 1 man and 1 horse. When they got there after many miles of desert, if the small basin was empty, there was doubt as to whether or not they could make it to the next one. I feel as if I am crossing a vast desert in desperate need of water when there is none. I wonder if this is what the Psalmist meant when he spoke of thirsting for God as the deer pants for the water brooks. I think of the deep still waters of the 23rd Psalm. Yet my soul feels as parched and cracked as in a drought. I think of the early and latter rains that were part of the climate and culture of Israel and long for cool showers. I think of Jacob, the well digger who dug many wells and then left them for others to use. I also know and am “fully persuaded” that there is refreshing in the Word of God. There is a sure hope that one day all tears will be wiped from our face by the hand of God. There is comfort in the weeping of Jesus with Mary and Martha. In my heart I feel that He fully knows our pain. How can we say that He feels our pain? The eternal God who is never less than fully whole; HE who is complete in and of Himself; how can our sorrows bring Him pain? I do not understand this. Yet, Jesus wept.
In these darkest hours we have ever faced the many verse I have memorized and studied come to mind. His word is a lamp and light. I can not go very long in a day but that circumstances bring to mind one passage or another. Things that are uncertain in life are to some degree illuminated by the light of His Word. I know that this is a result of living in a sin-cursed world. Perhaps no better answer will ever come, I cannot say. I can say that I do not understand how those who do not walk in His light can abide the darknesses (new word maybe) of this life.
I think of Psa 119 and the promise that His Word gives understanding to the simple. I certainly have learned most of what I know about life from the Word and from life considered in light of His Word, but this one is all new. I have no understanding on this one, yet. Nor do I ever expect to come to a very deep understanding of this.
It is reported that someone once saw Samuel Clemens (sp?, aka Mark Twain) reading the Bible and asked him if he was not disturbed by the things in that book that cannot be understood? He replied something like this, “It is not the things that I do not understand that bother me most, rather it is the things that I do understand.” Whatever he may have meant by that, my thoughts right now are, “It is not the things I do not understand that are a comfort to me now, rather it is the simple things that I do understand well that bring hope.” The promise of eternal life. The sure hope of bodily resurrection. The anticipation of heaven. These are sources of hope amidst what feels like an impassable and uncrossable (new word again?) gulf of hopelessness. Certainly, God must be carrying us now (Footprints).
I have often heard it said (do not say it myself, though) that God will not put more on us than we can bear. I think, so then, if maybe I was weaker we would not have this burden? A very big part of me would chose weakness rather than this burden with which we have been laden.
I think of the words of “the preacher” and agree that as far as hope in this life is concerned all is “vanity and vexation of spirit”. Our whole duty is to fear Him and keep His commandments. In the fiercest storm I have ever faced I at least remember to stay on course and anchor to the rock when we are tossed about. May God grant more grace.
As I hear the birds begin to sing outside and see what I think is the breaking of the day through the blinds I think of the passage that speaks of weeping only lasting for a night but joy coming in the morning. Would God that this day would bring joy. I feel little joy now, but I know that at some point today others in God’s family will stop by and offer some encouragement, not that things will get better, we do not have that sure promise, but that we are loved – and we do have that sure promise. Perhaps the promise that we are loved by both the Father and the family is the best that we can hold on to for know. At the moment it does not feel like enough, but in the moments of refreshing as God’s people have ministered to us, we have been greatly refreshed. It is just that our thirst is so deep and the day is so dry. For what we have received, we are thankful. For what we will receive we are hopeful.
Keep praying for us. I hope that the musings of my heart are a source of encouragement for others who are in sorrow. Please do not be discouraged by our trials, but be strengthened to trust more in the Lord, the Maker of heaven and earth. One day, our trials will be over and we will dwell with Him for ever.
Sun, Feb 13, 2005, 7:14 pm Central Time - Day TEN.
Thanks for prayers. They got Matthew out of bed today for the first time. He did well.
Asst. Vice Chancellor of Vanderbilt stopped by to visit Matthew again this morning. They keep asking what else they can do for us. Unbelievable! I loved many things about my college. Anita loves Bryan. Ashley is at a Christian college. But there is no way we could ever have even imagined (and certainly never would have expected) the level of support we have been given by the Vanderbilt University family! We are overwhelmed.
Matthew has slept a good bit of the day today. He is very weak on his right side. They are suggesting the possibility of some inpatient rehab. We will know more tomorrow and will pass on the word.
Our church took up a special offering today that will really help out. Praise the Lord, another oasis in the desert of trials.
Thanks for the prayers.
Mon, Feb 14, 2005, 3:12 pm Central Time
Ashley left to return to Pensacola a little while ago. It is about a seven hour drive. She was a tremendous help. Pray that she will be able to focus on her work and complete the semester well. This is her final semester and she expects to graduate in a couple of months with her BSN RN.Last night as Ashley stayed with him they had some tearful moments and Matthew shared that he was pretty scared about all of this. All of us are. Met with the surgeon this morning and he showed us the MRIs from Tuesday and Thursday. There had been some significant changes from one week ago. This is why he asked about implanting the gliadel wafers, he was fairly certain that the malignancy was going to be level 4 GBM. He showed us the portions of the tumor that he was unable to remove. He shared that radiation and chemo are necessary since this kind of tumor is very aggressive in invading other areas of the brain.
Matthew is having a rough day today. Wanted pancakes from McDonald’s instead of hospital food. He was not able to keep them down. Ashley was a great care giver at that moment. She is going to be a wonderful nurse, very tender hearted and full of compassion. He sat up in the chair for a couple of hours, got his hair washed. I gave him a bath last night. He has been sleepy all day and did not feel like walking for the rehab therapists earlier. Will try tomorrow.
Anita walked to Panera bread for lunch and is not back yet. This is tough on all of us, but perhaps toughest on the her. Pray that God will give her special grace and strength. Matthew received about a dozen cards and notes today; Ashley read them all to him before she left. We are very fortunate to have three such wonderful children. Pray for Andrew as he is in school back in Dahlonega. Tough to know just how much we should keep him here with Matthew and out of school.
The neurosurgeon does expect that Matthew may improve enough to finish the semester. We are not getting in a great hurry about that though. The semester is certainly not our biggest priority. I am finding it difficult to concentrate myself at times. Sorry for choppy sentences today. The words are not flowing very well.
We are working out details for possible transfer to the inpatient rehab section of VUMC for rehabilitation. Should know more on this in the morning.
Mon, Feb 14, 2005, 7:05 pm Central Time
Matthew has rested most of the day. Has very little use of his right arm or leg. He was not even able to support his weight on his right leg and would have fallen moving from the chair to the bed if the nurse and I had not caught him. This is a deterioration in his condition over the past couple of days. He had much more use of right side immediately after surgery than now. Neurosurgeon says this is likely the result of the trauma of surgery to the brain and expects it to be temporary.
NOTE: For those who we have just added to the e-mail list, I am not sending the full 14 page history anymore unless you ask. You can go to http://www.baptistboard.com/cgi-bin/ultimatebb.cgi/topic/26/1965.html? and read most of the background that brings us to this point.
Ashley is doing well on her trip back to school. I have called just about every hour to keep up with her.
Tue, Feb 15, 2005, 12:23 am Central Time
Anita is staying at the hospital tonight with Matthew. He needs someone with him. Anita does not want to stay at the campus apartment alone, so I guess she will be staying at the hospital a good bit. They brought in a nice cot, so she can rest better. I will be back up early in the AM. Thanks to all for the prayers.
Tue, Feb 15, 2005, 6:25 am Central Time
They are asking Matthew, “How bad is your pain? On a scale of 1-10, where does it rank?” He is frequently giving it a 9 or a 10. I believe him to be saying, “Of all the pain I have ever felt in my life, this is the most severe.” I wonder how long before he says, “12. Of all the pain I have ranked as a 9 or a 10, this is worse.” As a family, as we deal with this cancer, on a scale of 1-10, where is our pain? You can not fit this kind of pain on a scale of 1-10, you need a bigger scale.On of my jokes has been, “The other day I got on the scales at Walgreens to check my weight, I looked in the little window where the numbers were supposed to be, and it said, ‘One at a time please’”. Not only are we dealing with a level 4 GBM that Anita’s sister Diane had removed 13 ½ months ago, now our son has one, bigger and faster. Not only this but the 19/20 year old (Anita would know) son of my best friend fell off a ladder last Friday and now cannot move below his waist, it may get better after 4 weeks of physical therapy, they say, but there is a chance it may not. “One at a time please, Father, one at a time.”
We look at the 22nd Psalm and we know that David is giving a preview of the suffering of Jesus on the cross. Jesus quoted portions of this Psalm while carrying the weight of our sin. Yet I fully believe that David, in the Spirit, was also speaking of the dryness and suffering of his own soul. He tried to compare the despair in his heart to physical suffering. Jesus experienced the full spectrum of our pain, physical, emotional, and spiritual. I will talk of this Psalm more later (DV, deo volente, God willing), but for now look are verses 14-15 – “I am poured out like water, and all my bones are out of joint: my heart is like wax; it is melted in the midst of my bowels.
My strength is dried up like a potsherd; and my tongue cleaveth to my jaws; and thou hast brought me into the dust of death.” David was speaking of the utter barrenness of his soul. On a scale of 1-10... Oh wait, you cannot put that kind of pain on a scale of 1-10. You cannot put that kind of pain on any scale.Jesus knows our pain. No matter how much we suffer, He suffered infinitely more. The Holy Righteous Eternal Son of God bore our sins in His body on the cross. As the He shouldered the weight, the Father turned His back and walked away, “My God, My God! Why hast thou forsaken me!” Jesus knows. Jesus truly feels our pain in ways that no others can. On the cross not only was the body of Jesus broken for our sins. His heart and soul were broken as well, “My heart is melted like wax.”
I will be spending more time with David, and more time with Jesus.
My heart is both empty and full at the same time. Sometimes there are no words. Sometimes there are so many words. More, later.
Thanks for love and prayers.
Ray.
Tue, Feb 15, 2005, 10:33 am Central Time
Matthew is still having a rough time this morning. The neurosurgeon has ordered up another CT scan to “see what is going on in there”. There is the possibility that the tumor is “acting up” over the chemotherapy implants. Doc Weaver said his mentor referred to this as “poking a skunk”. You gotta get him out of the house, but sometimes he makes a stink about it (my own version of what he said). We will see where we are and then decide where we need to go next, this is the gist of what he suggests for now.As I sit here in the chair beside Matthew I want to hold him. He does not fit in my lap anymore. We all need to be touched. The gentle caress that brushes our hair back out of our eyes. A loving stroke that wipes a tear from our cheek. A hand resting on our arm assuring us of the continued presence of someone who cares. A warm hug that communicates the all encompassing message, “You are loved”. I’ll walk across town for a good hug. We hug a lot at our church. Not everyone is comfortable with a close level of physical contact, but that is OK, too. Certainly there is the potential of a warm loving friendship hug being misunderstood. I worry about that less now than I used to. For every chance of misunderstood intentions there are dozens or perhaps hundreds who clearly understand and know that a warm embrace tells them simply that they are loved. I think of a hug from a brother or sister in Christ as a hug from God that we can feel in a very tangible way. It is of sufficient value that I believe the risks are worth taking. We will deal with misunderstandings as needed. But that has very seldom been necessary. If uneasiness is sensed, I tend to back off a little.
When Matthew was a small child (sometime between 1 and 3) he went through a long period of time where he did not like to go to bed alone in his room. We had moved to another state to accept the pastorate of a small church in a small town (smaller than Dahlonega!). Whether it was the move away from family, or a different house, or a different room, or being upstairs in a room that was across the hall from ours – I do not know. I do know that Matthew was comforted by my presence and by my touch. Since he often took some time to fall asleep I would lay on the floor beside his bed, wedge my hand through the rails of his baby bed, and hold his hand. There were times when my hand would slip out of his and through the rails as I fell asleep in that position. Sometimes he was OK. Other times he would panic and cry out for my hand to grasp his once again. I am reminded of this as it occurred to me just now that once again I am wedging my hand through the rails (this time of a hospital bed) to communicate my presence and my love with a touch.
We long to feel the loving arms of our Father. We long for His touch. He is reaching out to us in the love of our friends (some of whom we have never seen, but will one day surely meet face to face in Glory) and in the recollection of passages we have learned down through the years. We all need to know that we are loved. We need to be touched. The kind words of so many have touched our hearts and communicated great love. Thank you is not enough, but it is all we have, THANK YOU.
Tue, Feb 15, 2005, 1:23 pm Central Time
Matthew has become more lethargic through the day. The CT scan reveals some swelling and some additional bleeding in the brain. The neurosurgeon is concerned, but not alarmed. They have moved Matthew back into ICU to try to get the swelling reduced. They will be increasing his steroids and also working to reduce the CO2 level in his body. We are not able to sit with him for more than 30 minutes every four hours through the day and not at all from 9:00 at night to 9:00 the next morning. Keep praying as I know you all are. As his condition improves, I will let you know.
Tue, Feb 15, 2005, 8:23 pm Central Time
They placed Matthew on a ventilator this afternoon to get the CO2 level dropped.Wed, Feb 16, 2005, 12:42 pm Central Time
Matthew had a restful night. His heart rate, BP, respiration, etc is all about where they want it to be. They will be keeping him sedated and on the vent for three days. Started yesterday afternoon so will be on the vent in ICU till sometime Friday afternoon. Put a feeding tube in this morning. It is hard to see him with all the tubes, hoses, and wires going everywhere but we know this is necessary. This is becoming fairly standard treatment for brain trauma to reduce brain swelling, lots of steroids and hyperventilation. Sorry have not posted sooner. Thanks for all the continued prayers and thanks to all who are keeping a close watch on Matthew’s condition. Plan to write more after our 1:00 visit (DV).
Wed, Feb 16, 2005, 11:21 pm Central Time
Matthew has been sedated most of the day. They have roused him briefly to semi-consciousness just enough to test his response to verbal instructions, squeeze my hand, wiggle your toes, raise two fingers, etc. Matthew has a very strong gag reflex and is really resisting the vent tube. They are not going to rouse him as often as they have been. He gets very agitate, gags, coughs, chokes, etc. This causes his BP to go up and his heart rate to drop a little. For the next 36-40 hours they will keep him fairly well sedated. He is not in an induced coma, he is sedated. Pupils are responding briskly and there is most certainly brain activity, though there is no need to monitor it. Thanks to all for prayers and thanks for the encouraging e-mails. We are not fond of this darkness, but the many love lights that have been shined our way are illuminating our hearts and making the long night more bearable.
Thu, Feb 17, 2005, 10:32 am Central Time
Thanks all. Please pray that the swelling will go down. Doc Weaver (he has been the greatest!) discussed some of the possible options if it does not, we know there are options, but we do not look forward to any of them. Will do a CT scan in the morning (Friday) to see where we are on this.A few days ago I spoke of holding Matthew’s hand through the bed rail. Should have mentioned that on nights when I came home after the kids were in bed it was Anita that held his hand through the rail. I was reminded of this when she told that Monday night as she lay on the cot beside his hospital bed she held his hand, again through the rail, for most of the night. If there is anything that surpasses a father’s love, it is the love of a mother.
One of the great blessing of my life is the love of three Mothers – my Birth Mother, who went to be with the Lord when I was only five, my Grandmother who went to be with the Lord in 1997, and my second Mother who I had the privilege of helping my Dad pick out. The first thing that impressed me was how great a bologna sandwich she made! As I think back on all the things about Mom that I cherish most dearly, her love for my children is right there at the top. Matthew, of my three, has always seemed like the favorite. I know that she does not love the other two any less, but she just had a special link with my second born. Ashley and I were talking about that the other day, and she was fully at peace with this special love between Matthew and his Granny. Yet I must also say that there is a special love between Granny and Ashley as well, Andrew, too. I would not say that a Grand-parent loves more than a parent, but that a Grand-parent loves different than a parent. There is truly no way to measure the love of a Grand-parent.
My own Grandma never recovered from the loss of her only child. Just a brief thought of Doris Ann, even thirty-five years later would immediately bring tears to her eyes and face. She could not bring my mother back so she and Granddad poured their love into me instead. I can think of no child who was more loved than I was. I am sure that other parents and children may feel the same way, but in my heart I know they are wrong. As I sat beside the bed in ICU wondering about what the future holds, it dawned on me what a blessing I was to my Grand parents in that I could receive in some way their abundant love for both me and their daughter, with Jesus. I wondered why God has not given us a Grandchild to love in case he takes Matthew. There is probably no answer to this and so many other of our questions. For now we must be content to rest in our Father’s love and quietly ask, why? We do not expect an answer, but like Jesus on the Cross, we ask nonetheless, leaving the broken-ness of our hearts open for all to see.
For now, thanks to all for the prayers. Specifically, pray that the swelling will go down and the brain will recover from the trauma it has and is experiencing. The e-mails and posts are like warm blankets as our hearts shiver in what seems like an endless winter.
Thanks to all for your prayers, calls, notes, etc.
Fri, Feb 18, 2005, 9:50 pm Central Time
Thanks to all. Yesterday the surgeon discussed the possibility of going back in to get the rest of the tumor. There are several things that could be causing the swelling.1) Normally this kind of tumor “presents” with a high degree of edema (swelling), it may be that after being partially resected, the balance of the tumor has decided to secrete whatever it could to cause swelling now (an oversimplification, but that is the best I can do on this one)
2) It is possible that the swelling is related to the chemotherapy implants (gliadel wafers) that were left in place to deal with the balance of the tumor that they did not remove in the original surgery.
3) There are some indications from the microscopic slides that this particular variety of tumor grows rapidly and aggressively. Cutting on it may have triggered a burst of growth that is responsible for the swelling.It may be any of these, a combination of these, or something that as yet we do not know. The Docs are discussing the possibility of leaving Matthew sedated and on the vent till next Friday, IF they decide to go back in to get the rest of the tumor.
Getting the rest of the tumor puts right side mobility at greater risk. Doc said, “I cannot tell you that Matthew will regain the use of his right side if we do not go back in. Nor, can I tell you that he will lose more use of the right side of his body if we do go back in.” It is a risk that must be weighed against the risk of not going back in.
We are likely to know more after the CT scan this morning. Continue to pray. Thanks for the calls, e-mails, visits, etc.
Ray
Fri, Feb 18, 2005, 2:50 pm Central Time
The swelling is down a little. Not as much as hoped. They will be keeping Matthew sedated and on the vent through the weekend. After our last conversation with his neurosurgeon, it seems that they are leaning toward an additional surgery to remove what is left of the Chemo implants and the rest of the tumor on Friday. Will know more on Monday. Waiting and waiting is very tough. But we are pleased that he is stable and improving some. It could be worse. We do not understand, but we are called to trust, not understand.Resting in HIM,
Ray
Sun, Feb 20, 2005, 10:11 pm Central Time
Dear Friends,Thank you so much for your continued prayers. At the 7:00 AM neural check this morning (Sun) Matthew was not responsive. He did not squeeze hands, raise fingers, or move foot or toes. They did another CT scan and found some increased swelling. Church was very tough this morning. It was great in that our family at Berea has really drawn closer than we already were. The love and support has been exactly like Jesus said in the Upper Room, “A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another. By this shall all men know that ye are my disciples, if ye have love one to another” (John 13:34-35). We have felt this love not only from our own small congregation, but from Matthew’s Church (Community Bible) here in Nashville, other churches in our own community, and other churches here in the Nashville area and brothers and sisters in Christ from around the world. My prayer as I left Dahlonega was that Matthew would be responsive and that as he had squeezed my hand when I left Saturday afternoon he would squeeze my hand upon my return today. God is so good. Not only did I get a firm hand squeeze, but a wave, and open and partially focused eyes as well! God is so good!
They have decided to go back into surgery tomorrow morning at 7:30 (CST) to reopen the skull, drain the fluid buildup, remove the chemotherapy implants and remove the rest of the tumor. The Doc is very compassionate and very skilled. We are confident that we could have no better anywhere. He will be as careful as he can, but the rest of the tumor must come out, for several reasons. He has been in continual discussion with the other chief neurosurgeon in the group here and with friends and mentors in other states as well. The risk is that there may loss of function and mobility on the right side of the body. We do not know how much impairment may occur, but there is really no choice at this point. Keep Matthew, Doc Weaver, the surgical team, and us in prayer. Marty Wynn (my best friend) is driving up from Columbus, GA this evening through early morning. A young man from the church is driving with him to keep him company. Pray for their safety as they travel.
Mon, Feb 21, 2005, 1:45 pm CST
Doc just came and talked with us. Said he feels that it went well and that it accomplished what they had hoped. Will not bring Matthew off the vent till later this evening, or perhaps tomorrow. Will not know about possible impact to mobility till later. Thanks for prayers.
Matthew Prince - Tue, Feb 22, 2005, 10:08 am Central Time
Dear friends,
God is good all the time and all the time, God is good. But today He was especially gracious to our family! We looked at the post-op MRIs and all visible traces of the tumor are gone! Doc Weaver was very pleased with the results of the surgery and so are we. They removed the breathing tube and Matthew is on oxygen with a mask. He is talking a little and moving the left side well. Still do not know about use of right side yet, but we are so grateful to God for what we have received that our hearts are bursting with joy right now!Matthew talked to his sister a little while ago, more like listened and responded with a weak “I love you”. He also “talked” with his Granny and Uncle John and Aunt Julie, got off some more “Love you”s for them, too. Words have not been adequate to express our emotions through this whole time and they fail us again, even now.
Thanks be to God for His mercy in waking our son up. Thanks be to God for a successful surgery and a clear MRI. Thanks be to God for the wonderful surgeons, nurses and staff here at VUMC. Thanks be to God for the wonderful support we have continuously received from the “Vanderbilt family” from the top all the way down. Thanks be to God for His faithful servants who have been such a constant encouragement in this time. He is to be praised, for He is worthy!
Wed, Feb 23, 2005, 9:25 AM CST
Matthew had a good night last night. As of just a few minutes ago he is disconnected from ALL the wires and tubes, Praise the Lord! He is eating real food now and can have anything he wants. Eating a Panera Bread Cinnamon Crunch bagel at this very moment. He will be going to a “step down” room today and will begin a little bit of physical therapy/rehab.
At this point our prayer need is for his right side to begin to develop strength and coordination. It is not a matter of the muscles, it is a matter of the brain communicating with that side of his body. The pressure of the tumor and the trauma of brain surgery seems to be the cause of the right side paralysis. We are very thankful to God for answered prayers to this point. He is so good. We do not want to get greedy, but we do know that God is not limited in what He can do. Our desires are for Matthew return to a more normal life and be able to finish the semester. So, please pray not only for the physical therapy/rehab aspect of his recovery, but pray that he will also be able to focus on his academics.
We are anticipating transfer to the Stallworth Rehab Hospital (still part of Vandy UMC) at the end of the week. Do not know when we will be starting radiation and chemo, but both are pretty much definite due to the high level of malignancy. Thanks for the calls, e-mails, cards, letters, etc. Sorry have not been able to answer all, may be able to do a little better as things calm down.
Wed, Feb 23, 2005, 10:19 AM CST
PT/Rehab people are here now! Matthew is moving his right leg and standing with their help. He is sitting up in the chair and doing very well. Less than 54 hours ago he was “non-responsive” for his neural exam. Praise the Lord for this great progress! We are so pleased with all levels of care we have received here at VUMC. The food is not that great, in Matthew’s opinion, but local restaurants are close and we are “carrying in”. Just now moved his fingers and thumb on the right hand! No loss of range of mobility. Who would ever have thought that just moving the fingers and thumb could bring so much joy to a father’s heart? Keep praying!
Fri, Feb 25, 2005, 12:14 AM CST
Today was a good day for Matthew. He is getting stronger. Still a long way to go, but more alert, sitting up in the chair longer, a little more strength on the left side and a little more movement on the right side. Curled fingers on his right hand and moves right thumb a little more. Plans are to transfer to Stallworth Rehab hospital later this morning (Friday) for inpatient PT/Rehab for a few weeks. Radiation treatment will start on Monday the 7th of March. At this point Matthew seems to be out of any immediate danger. Will probably be sending e-mails out less frequently for a while and posting to the board with less frequency as well. Unless you hear different, we are on track with treatments. I will post occasional updates unless things change more rapidly than anticipated. Thanks to all for continued prayers.
The past three weeks have gone by so quickly! It has three weeks today that we learned of the “abnormal mass” in Matthew’s brain. About a week earlier we learned that Matthew was experiencing some numbness in his right leg. Matthew has had some minor back problems which have responded well to chiropractic treatment and we assumed he was “out of alignment” and a nerve may have been getting some pressure as a result. He went to the Vanderbilt University student health service on Wednesday for an initial visit but chose to go to his afternoon class instead of waiting a few more minutes to see the physician. He returned on Thursday and met with the physician who immediately sent him to Vanderbilt University Medical Center. The neurologist on call that evening called us, explaining that the CT scan showed some abnormality that was cause for some concern and asking that we come to Nashville. We arrived at about 4:30 AM CST on Friday the 4th of Feb. In a few hours, we met with the neurologists of VUMC and got our first look at the MRI that had been taken in the early morning hours. The tumor looked huge, a little larger than a golf-ball, or so we thought. At first it was suggested that it would likely turn out to be inoperable. Then, as we met with several neurosurgeons later that day, they expressed their opinion that surgery was the best option, but that the senior brain tumor surgeon would talk with us soon. Doctor Kyle Weaver came and spoke with us about the indications of the MRI and at our request spent a good bit of time showing us many computer images from different angles and perspectives (all point and click, very impressive!). The undeniable reality of a “brain tumor” hit us all pretty hard. Initially, the lack of obvious edema (swelling) seemed to indicate a likelihood that the tumor may be low grade – more benign, less malignant. Surgery was scheduled for Friday the 11th. Matthew was discharged from the hospital to attend classes as there seemed to be no compelling reason to keep him “inpatient” for a week as we waited for surgery.
I drove Anita home on Monday the 7th after our late afternoon meeting with the neurosurgeon. She wanted to teach classes for a few days and prepare for a more extended absence. The administration, faculty, and staff at NGCSU has been wonderful in shouldering the burden of her classes, constantly assuring us not to worry that everything was under control and her place was clearly with Matthew. Meanwhile, here in Nashville, Matthew continued to attend class between additional outpatient MRI’s and other pre-op procedures. He was gradually losing use of the right side of his body and Ray began to learn a little about the navigation and guidance systems on a wheelchair, low on technology, high on muscle tone and coordination. By Wednesday evening, Matthew was having difficulty composing, retaining, and expressing more complicated thoughts. Wonder if the awareness that they were about to cut open his skull and take out some “extra parts” in a few hours, could have been a factor?
On Friday morning in pre-op the we began to get some indications that the tumor may be higher-grade, more malignant. This was not welcome news. A member of the surgical team called us several times over the next 6-7 hours to keep us updated on the progress of the surgery. Following surgery, Dr. Weaver met with us, Ray, Anita, Ashley, and Andrew. We were devastated to learn that the tumor was the size of an orange, highly malignant, and that the doc opted to not remove it all to try to preserve Matthew’s use of the right side of his body. The chemotherapy implants were attached to the portions of the tumor not resected and are normally effective in delivering effective treatment precisely to the targeted areas. Immediately following surgery Matthew seemed to be doing quite well. On “wake-up” he counted for the Doc in German rather than English and upon arriving in post-op ICU he and the Doc had some conversation in German, not bad after just getting your brain rearranged! Sorry, Mrs. Heaton and Mrs. Carson, the Doc did not speak French or Spanish, so German was the only choice available, Yaay, Frau Smith at NGCSU!
Matthew also had improved strength and coordination on the right side immediately post-op.
Matthew Prince UPDATE - Fri, Mar 4, 2005, 8:07 AM CST
It is hard to believe that less than 12 days ago we were hearing words like “non-responsive” and there was a very brief mention that we should think about whether or not we wanted to place Matthew back on the ventilator if he did not “fly”. We were not ready for any such discussion and promptly explained our position to the resident physician who raised the subject. We knew that the second surgery was going to much more aggressive and that all of the tumor needed to come out this time. Matthew was very pleased after the first surgery to find that he was still able to communicate fluently in his three additional languages. Before the first surgery, Doctor Weaver (who has been the greatest in every way) explained that he did not think that Matthew would lose either language skills or right side mobility, but that loss of full use of the right side was a possibility. Matthew said, “It’s not what I want, but it is something I can live with as long as I get to keep my languages”.
Following the second surgery, Matthew still has his languages and at this point is learning to get around with very little use of his right side. He can move his right fingers and grip with his right hand, but he cannot pick up his right arm. He can support his weight on his right leg as long as he is holding on to something. He can stand up without holding on as long as he is on both legs. He cannot walk, or even “shuffle” yet, but Physical and Occupational Therapy continues. At this point we do not know how much mobility and function will return, but we are praying for more than we have so far.
Matthew has dropped one class and plans to finish the semester with 12 hours. He starts radiation treatment on Monday, March 7th. We expect that Chemotherapy may start the following week, but this is not definite. Right now we are waiting on final pathology from the tissue samples from both surgeries. They are very confident that the tumor was not a GBM, but is rather an anaplastic ependymoma. This is both good and bad. It is more responsive to treatment and of course the fact that they got all of it that could be seen is a very big plus. The post-op MRI showed no traces of any of the tumor. A complete resection and a clear MRI post-op are the two biggest factors in greater longevity, so in this we are encouraged. There is no doubt that the tumor was highly malignant and thus the Radiation and Chemotherapy are necessary to reduce likelihood of recurrence.
One other wrinkle regarding ependymomas is that cranial (brain) ependymomas sometimes lead to spinal ependymomas. We are waiting to receive results of spinal fluid tests from Wednesday and Matthew also has a spinal MRI (3 hours!) scheduled for this Saturday (Mar 5). Ashley will be driving up to visit this weekend. Pray for her traveling safety from Pensacola to Nashville.
For now pray that Matthew will regain more use of the right side and that the radiation and chemotherapy will not be a barrier to his return to studies. He plans to resume classes after Spring Break. Spring Break for Vanderbilt starts this weekend – classes resume on March 14th. We are learning that God is using Matthew’s faith as an encouragement to others. Pray that people will be challenged and encouraged and that God will be glorified through all that has and is happening.
Sorry for such a long delay between the last update and this one. Will try to send one out at least every three or four days for a while. Thanks to all for the many inquiries as to how Matthew is progressing. AND, most of all, thanks for continued prayers.
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