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Saturday, August 20, 2005 8:27 AM CDT
***Rejoice For God Has A New Angel***
Good Morning:
I sit here briefly this morning to inform you all that Tory was summoned to join God in heaven early this morning and did so at about 4:25 a.m., in a very peaceful and painless way. I ask that everyone take a moment to thank God for sharing her with us all over the last 12 1/2 years of her life here on earth and to remember how she touched each of us in a way only she could.
Although we must all grieve for a short period, I feel we must also rejoice and take comfort in knowing that she will now have eternal peace and comfort in Gods Kingdom!
We have many things to complete today and in the upcoming days ahead. We will be here around the house over the weekend. At the moment we are tentatively planning to have a formal memorial service and Celebration Of Tory's Life next Saturday on August 27th. There will be no formal visitation and open casket, since we intend to honor Tory's wish to be cremated.
I must now go. I will try to share more information sometime soon as time and emotions permit!
Love and Peace To All:
Love Troy
Wednesday, August 17, 2005 6:50 AM CDT
Good Morning:
Tory has continued to be very strong and courageous since my last update. As usual she seems to be the strongest of us all and continues to be more concerned about everyone around her than herself. Over the last few days her condition has continued to slowly decline as her body and mind prepare for her transition to life in heaven.
Tory continues to be visited daily by nurses with the hospice program and this if very helpful to us all. This gives us a chance to address her daily needs and ensure that she is comfortable and not in any unnecessary pain. We have now began giving her scheduled doses of the Tylenol #3 with Codiene each day. This has helped her with a variety of aches and pains that she was beginning to experience throughout her body. This also appears to be helping her sleep better, during her increasing rest periods each day. She now spends a considerable amount of time each day sleeping and this was also anticipated. Her breathing has become more erratic and laborious and she is also having more difficulty swallowing foods and liquids. Her appetite has also decreased quite a bit over the last day or two.
We continue to surround Tory with love and friendship as much as possible each and every day. We now ensure that someone is with Tory at all times. Tory's Grandma Mary Pat, Great Aunt Peggy and Uncle Tim have now arrived and are also here to help comfort her. Their arrival has helped enhance our support team and we are now better prepared to handle any needs Tory might have in the upcoming days. We also intend to have Pastor Bass or a hospice Chaplain visit Tory at least every other day to help her prepare for her new life in Gods glorious kingdom.
Each day for Teresa and I is filled with a variety of emotions, and having our various family members here is really helping us stay focused on Tory's needs. We are very fortunate to have such a wonderful group of family here with us. We are also very fortunate to have such wonderful friends and neighbors that continue to check on us and do anything they can think of to help us. Although we would try if we had to, I really don't think Teresa and I could get through this on our own.
Tory continues to have some visitors each day and she still seems to appreciate and enjoy this. The visits are now shorter in length, but still remind her how much she is thought of and loved. The visits are usually limited to the afternoon and we would ask that anyone wanting to come see her call first, since her condition could change at any time.
We would like to again thank everyone for your continued thoughts and prayers for Tory and the rest of our family. This is appreciated so very much and continues to give Tory much strength to face the challenges that are ahead of her in the upcoming days. Please continue to pray that Tory's transition from life on earth to life in heaven will be peaceful and without any pain.
Love Troy
Friday, August 12, 2005 4:38 AM CDT
Good Morning:
The last couple days have continued to be a very emotional and difficult time for us all. Tory as everyone might expect has been the strongest of us all!
She continues to have daily visits from the Hospice nursing staff. She receives a brief evaluation during this time and assitance with personal hygiene matters. Throughout the week so far, her vital signs have remained strong and are of no immediate concern. She has continued to experience some fairly minor headaches and neck pain which have been relieved with Childrens Tylenol or Tylenol #3 with Codiene. So far we have not had to give her any of the Morphine Sulfate.
Tory's vision, balance, coordination and so forth have remained fairly stable as well. She has had a little more trouble with her eyes, but is still able to see. She had a pretty bad fall on Tuesday night that scarred us all. It was caused when she attempted to get out of bed on her own and walk to the bathroom by herself. She collapsed immediatly and fell to her right striking the right side of her body on her bedside table and the floor. Fortunately she did not strike her head. Although she was sore afterwards, she was in no way injured as seriously as she could have been and we are very fortunate for that.
As each day passes, Tory remains very strong, determined and courageous. She is not scarred about what lies ahead and as always worries about everyone around her and not about herself. She is confident that God will take care of her and she will join him in heaven when it is time for her to leave us. In the last few days she has also needed much more rest and her highest level of activity is in the late afternoon into the early morning hours. This is not uncommon and she personally does not have any control over this. This is something her body does as it prepares itself to transition from life on earth to life in heaven.
During the time she is awake, she is generally still very alert and aware of everything around her. She uses this time to share a variety of powerful thoughts with Teresa and I, which often bring out a lot of emotion.
Since Tory was simply getting too run down earlier in the week, we had to restrict the numbers of visitors she was having. We felt it was much more important that she received adequate rest at this time. Over the last two days this appears to have helped very much and she not only seems to be more comfortable, but also appears to be more engergetic when she is awake. If things continue on this course, we would consider allowing more visitors to stop by beginning later this afternoon or tomorrow afternoon. I would recommend that anyone who would like to stop by and see Tory call first, since everything can change at any time. I would also recommend that everyone plan on a short visit if possible. She seems to handle these better than extended visits.
We feel that everything possible is now being done to ensure that Tory is comfortable and any pain she might experience can be managed appropriately in the upcoming days. She is now surrounded each day by Teresa and I as well as three of her grand parents. Several more of her family members from out of the area will be arriving soon to see her and assist with her needs. Tory is very excited that they will be arriving over the weekend and early next week.
In case there was any doubt, Tory will not be returning to school this year. The new principal, Rita Bergsrud and Peggy Nesdahl stopped over on Wednesday afternoon to visit Tory and discuss this fact. During this time we also discussed how Tory's passing might effect the students and faculty and how I could assist with this if it becomes necessary.
There is not really a whole lot more to share at this time. We are now surrounded by a very strong support group that keeps Teresa and I going. This obviously includes the grand parents but also includes a variety of close family friends. Their assistance has allowed Teresa and I to focus on Tory's daily comfort and pain management needs. It has also allowed us to get a little rest, although it is very hard to think about yourself and/or sleep at a time like this. Our support group will continue to grow in the next few days and we are again very appreciative for that.
We thank everyone for your continued thoughts, prayers and support. As I have said before, we would not have made it this far without them. Thank you for everything each of you continue to do to assist us in your own individual way. We will continue to ensure that Tory is comfortable and does not experience any pain. We will also continue to surround her with love and friendship and to ensure she is not scarred about what lies ahead. We have found that the visits from the Chaplins have really helped in this regard.
Thanks again for everything! I will continue to keep everyone updated on this website as time permits.
Love Troy and Family
Tuesday, August 9, 2005 8:18 AM CDT
Good Morning:
Since Tory returned home last Friday, her condition has remained fairly stable and we continue to make her as comfortable as we can under the present circumstances.
The Altru Hospice Staff is now actively involved in her care and the nurses come to visit with and check on her every morning. This service began on Saturday morning and will continue indefinately. Tory will also be visited each day by a nurses aide, who will help us maintain Tory's personal hygiene and so forth. So far Tory's vital signs remain strong and she is only experiencing fairly minor and short lived episodes of headaches and neck pain. For the moment this is being controlled with only Children's tylenol and DMSO gel, however, we have obtained two other stronger pain medicines to provide her with if it becomes necessary.
Tory remains fairly alert and aware of her surroundings. On occassion she does now get some things confused but we have been informed that is to be expected and might become more prevelant as the days go by. Her vision, balance, coordination, speech and so forth have also remained fairly stable with no significant changes in the last few days. She does require full assistance when trying to move anywhere in the house, and also experiences random panic attacks that cause her to become frantic and emotional from time to time.
Tory continues to be very eager to have visitors and really enjoys talking to anyone that might drop by to see her. Although she is beginning to get a little more tired each day, she has still given us instructions that she wants to be woke up if someone stops in to see her. Over the weekend and the last few days, many friends and acquaintences have dropped by to spend a little time with her. This helps keep her time occupied and gives her the chance to share some thoughts she has been wanting to express.
Tory was baptized by Reverend Jerald Bass the minister at the United Wesley Methodist Church, here at our house on Saturday afternoon. It was a very nice and informal ceremony that included Teresa, myself and Grandma Shirley. This brought much comfort to us all. Reverend Bass also spent a considerable amount of time visiting with Tory about God and Heaven. This gave her the opportunity to ask any questions she had in an effort to keep her from being scarred about her future transition from life on earth to eternal life in heaven. Reverend Bass returned to our home on Sunday and shared communion with Tory, Teresa, Myself and Grandpa and Grandma McBroom who arrived a short time earlier that morning. Once again, this was a very peaceful and comforting time for us all.
At the present time we intend to remain at Tory's side and ensure that she is as comfortable as possible. We will also continue to surround her with family and friends as much as possible. She knows that she is loved and is comfortable with the fact that God is preparing for her arrival at which time she will become one of his angels and experience eternal peace and comfort. She still does not ever complain about anything and continues to be worried more about everyone around her than about herself.
Once again I encourage anyone that would like to see and visit with Tory to do so. We must remember that everything could change at any time.
Teresa and I are now surrounded by a very strong support group that continues to grow each day. This is very comforting to us and allows us to focus on Tory's specific needs each day and night. We are very grateful for this and don't know what we would do without all the assistance we are receiving.
We all continue to have a variety of different emotions each day and just do the best we can to work through them. The fact that we know Tory has been accepted by God and will soon be a member of his flock in heaven is very comforting and helps us through each day.
I could go on forever, but I think this is the appropriate time to end for the moment. We thank everyone for your continued thoughts, prayers and other contributions you have and continue to provide us during this difficult time. Please continue to think of Tory when you can and pray that her approaching transition into heaven will be filled with comfort and peace.
Love Troy and Family
Saturday, August 6, 2005 3:52 AM CDT
Good Morning:
I sit here this morning reflecting on what a special gift god gave Teresa and I in the form of our beautiful daughter Tory Elizabeth Vinson on March 5th, 1993. After years of being told that we would never be able to have a child, Tory was miraculusly conceived and given to us to love and nuture. Over the last 12 plus years she has filled our hearts with love, as well as many other of the frustrations that are associated with parenting. It has all been worth it and there will never be any regrets!
Tory's last week has been anything but great. It is so very difficult to see a child that you love so very much do everything she is asked and not be able to be guaranteed that her efforts will absolutely result in a favorable outcome. Tory has remained so very strong, determined and courageous during her battle with her cancer, and never once questioned what she was asked to do during her continuing treatment. For the last year and a half it has been so hard to see her work so hard to overcome each obstacle only to have another one pop up to challenge her further a short time later. Although she had every reason to complain or get tired of trying, she never did and always did whatever Teresa and I or the many members of her medical team requested. Even to this day, Tory remains very positive and optimistic and has always felt that god chose her for this callenge becasue she was so strong. She also felt that although none of us knew exactly what gods intentions were, that he had a special mission for her that would be revealed to her when the time was right. There has never been any doubt in anyones mind that has ever met or known Tory, that god definately had a special place for her in heaven when he felt it was time for her to join him!
This should obvioulsy be considered a very great and special thing that Tory would be selected to share eternal life in such a wonderful place, free from prejudice, pain, suffering, war, CANCER and so forth. However, for those of us on earth that have been able to share in Tory's wonderful life it is also a very sad and tearful time knowing that she may be leaving us sooner than we had ever imagined.
We returned Tory to Fargo yesterday for her weekly checkup with Dr. Kobrinsky at the Maris Cancer Center. Over the last week her condition has continued to gradually deteriorate and she was visibly much more sick than the week before. Over the last week her vision has continued to diminish, her balance and coordination have worsened and she is no longer able to walk on her own without complete support and assistance. She has also been unable to tolerate any of the treatments we were providing her and experienced moderate to severe nausea episodes on nearly each of the days between Sunday and Friday. She also began to be more confused about many things and isn't always sure about who is who or what is what. In addition she began to develop unexplained episodes of very harsh hiccups and more frequent head and neck aches. She has also been very restless at night and lacked any quality in what little sleep she might have got. These were all some of the symptoms we were previously informed would suggest Tory was loosing her battle with the cancer, that would in turn signal the time she had left with us on earth was very short.
While Nurse Pat started Tory on an IV to replace the much needed fluids in her body, Teresa and I met with Dr. K., and once again discussed Tory's present condition and prognosis at length. To begin with we were assured that we were very good and loving parents and had done everything we could to ensure Tory had everything she needed to fight her courageous battle against the cancer. We were also reminded how much the three of us have inspired the many patients and medical staff members we have met or worked with during Tory's treatment. Dr. K then informed us that there was no evidence that Tory had benefited from any of the more recent treatment regiments, and they were in most cases only making her feel worse with no hope of a favorable outcome.
As you might imagine this was a very emotional time for us all, since it was now time to decide how Tory's transition from life on earth to life in heaven would occur. After many tears and much discussion, it was decided that Tory's quality of life should continue to be the most important thing and agreed that any further treatment except for pain management would be discontinued. It was decided that all medicines except for the steroids, anti-siezure, and any needed pain or comfort medicines would be discontinued. The dosages of her steroids and anti-siezure medicines were increased in varying degrees.
The damage the cancer has caused or will cause in the near future as it continues to spread throughout her brain is irreversible. The hiccups that she has recently developed is an indicator that there is already pressure building against her brain stem and a major stroke is likely sometime very soon. When asked, Teresa and I insisted that we would take Tory home and she would not be hospitalized. Dr. K was comfortable with this and did not have any objections. He was also not surprised in the least that we would feel this way and knew without a doubt that we would all do whatever was necessary to ensure Tory was comfortable in the upcoming days.
Dr. K felt that Tory's death would occur sometime very soon, although he admitted that with her strength it might not be for another month. However, he didn't expect her to live any longer than that.
When we had all composed ourselves to some degree we then returned to Tory's location and Dr. K discussed her recent symptoms and prognosis with Tory and the rest of us as a group. He reminded her how strong, determined and courageous she had been during her battle and how much she had touched all of the medical staff and many other patients she met along her journey. He also reminded her about how much her cheerful attitude and smile had touched everyone each time she was there and helped brighten everyones day each time she was around. Tory was not surprised with what she was informed by Dr. K., and admitted that she knew god would be calling for her very soon. She stated she was not scared of this and new that god had something much more important planned for her when she arrived in heaven. This just like our conversation with Dr. K., before it, was very emotional but very necessary, since we agreed that Tory must know the truth about what was ahead.
Tory then continued to receive her IV fluids, and also got a dose of the Oloxy nausea medicine at our request. Dr. K's staff then began making arrangements for us to meet with Hospice representatives from Altru Hospital upon our return to Grand Forks, so that Tory's future needs could be addressed.
Prior to departing, Tory was visited by many of the staff members in the cancer center and from other parts of the hospital who either met her or provided treatment to her during her courageous battle. Once Tory completed her IV and visits with all the various people stopping in to see her we began our return home to Grand Forks. On the way home, Tory looked much more comfortable and slept almost the entire way after she ate a double cheeseburger we got her at Burger King.
Once we arrived at home, I stayed busy with phone calls to our health insurance provider and the Altru Hospital's Hospice director coordinating Tory's future needs here at the house. Tory wanted to go inside and lay down and did so. She stated she was very tired. Once she had rested a bit, she then began to feel a little better and stayed busy eating a varitey of things that she could get Grandma Shirley and Teresa to bring her. We all had a nice supper together and spent most of the evening visiting and reminding Tory how much she was loved and how very proud we were of her. We all are filled with great emotion and it is very hard to think about loosing Tory, however, we must also believe that god needs her very much and will ensure that she continues to be loved and cared for just as Teresa and I have done during our time with her here on earth.
Teresa and I eventually layed down with Tory as usual in her downstairs room in preparation for bed. Since Tory continued to be restless, we gave her a mild sedative for the first time and she quickly drifted off to sleep and is sleeping the best she has for several days. It is so good to see her so comfortable once again.
The hospice nurse is scheduled to come over this morning at 9:30 or 10:00. At that time we will complete the initial patient survey and begin planning for Tory's future needs. Some other visitors will probably be stopping by as well, and we are trying to arrange for Grandma Shirley's minister here in Grand Forks to come out sometime soon and visit with Tory for a while. As I have stated before, we intend to ensure that Tory is surrounded with love and friendship each and every day until God decides it is time for her to join him in heaven. We, however, do not know exactly when this will be.
Anyone that might want to stop by and visit with Tory for a short while is welcomed to do so. She still enjoys talking with everyone when she feels up to it. It would probably be best to call ahead since all things are subject to change without any notice.
Teresa's Dad (Grandpa Harry) and his wife (Grandma Mary) are already on their way here from Texas. They will be driving up and it is our understanding that they left last night. They should be arriving sometime tomorrow. Teresa's Mom (Grandma Mary Pat) will also be arriving sometime in the next week. My mom (Grandma Shirley) is already here and has done more than words can explain to help us over the last several weeks.
Well, I think that's it for now. I'm sorry that I had to share this unfortunate development with you all, however, it was now necessary to do so. We would all like to thank each and every one of you for all your thoughts and prayers during our difficult journey thus far. We would not have made it this far without your support! Please continue to pray for Tory when you can and to thank god for sharing Tory with us all for the last 12 plus years. We love her so very, very, very much! I must now go.
Love Troy and Family
Sunday, July 31, 2005 5:54 AM CDT
Good Morning:
Tory continues to remain very strong, determined and courageous as she continues her very brave battle with her cancer. Although she is capable of getting a little cranky from time to time, she is mostly very upbeat and positive each and every day. Her appetite remains very good and she has once again been gaining weight and not loosing it. Although she has recently experinced some set backs with her vision, balance and coordination, she remains determined to do as much as she can for herself and continues to enjoy reading her new Harry Potter book, checking her web page and emails, and playing card games. She also likes visiting with anyone that drops by to see her.
We returned Tory to Fargo this past Thursday (July 28) for her next MRI and so forth. Her lab work was done first and then her MRI was administered that afternoon. We stayed at the Ronald McDonald House (North House) that evening.
We met with Dr. Kobrinsky (Medical Oncologist) on Friday monring (July 30) to discuss the MRI results. We were informed that the last month of chemo treatment using Cyclophosphamide and Orfadin, had not done anything to slow, stop or reverse the progression of Tory's cancer. The MRI showed that the cancer was continuing to spread in her brain and from a medical stand point Tory's situation was now very serious and/or critical. It was confirmed that Tory's recent vision, balance and coordination problems, were being caused by the cancers progression in her cerebellum. Dr. K. was very surprised about how well she looked and how much she could still do for herself under the present circumstances. He contributed her present state to her never ending strength, determination and courage.
We all discussed how we should continue with Tory's treatment from this point on. Dr. K asked Tory what she wanted to do and was not surprised when she replied "keep fighting, I've been through too much to get this far and quit now!". Dr. K. was not surprised by her thoughts and stated that is what he expected her to say. We then discussed the limited medical treatment options that remained as well as the Cesium Chloride Alternative Treatment Protocol that I had discovered and been researching.
It was decided that we would begin the Cesium Protocol immediately and also give her a new chemo drug that is referred to as Pegla. Once again, neither of these treatments had any guarantees that they would work, however, they were our next best hope. The last form of chemo was discontinued. We were informed that Dr. K. had used the Pegla with some limited success previously with another form of brain tumor, but it has never been used for Tory's type of tumor. We were informed that the Pegla was a fast acting drug and if it worked some improvement should be seen within a few days. On the other hand, it is a short lived medicine and must be readministered more frequently at two week intervals. The Pegla was administered by syringe and Tory got her shots and was then watched in observation for an hour before we departed and returned home.
I also started Tory's Cesium Protocol Treatment on Friday after we met with Dr. K. Dr. K., had a few minor concerns about the Cesium use, however, they did not outweigh the urgency of Tory's present situation. This treatment protocol will continue daily for the next month or more. It is a very demanding regiment that will require taking or applying many vitamins, minerals and/or dietary supplements each day. It also requires a strict diet and daily exposure to unfiltered sunlight.
So far Tory has tolereated both of the treatments very well. She will also remain on her steroids and anti-siezure medications. She must be taking at least 35 or more pills a day now.
We have also discussed the possiblity of using another treatment procedure and drug that is still being researched and tested. I learned about this drug and treatment protocol when I spoke to the Iowa University Medical Research Center about Tory's situation. Dr. K., did some follow up and stated that they could get the medicine if we wanted to consider using it. It is our understanding that the drug has shown some sucess during research and testing, but it has never been used clinicaly for Tory's type of tumor. We all agreed that it could very well be our next option if needed.
For the moment we have discontinued any efforts to try and take Tory anywhere else for treatment. This is because many of the possible medical treatment options would require Tory to be off all chemo drugs for at least 3 or 4 weeks before she could be seen and evaluated, and that just is not possible at the present time.
It has also been decided that Tory will not attend Kamp KACE (Kids Against Cancer Everywhere) this year as planned. This was disappointing to us all, however, it is important for Tory to stay on her Cesium Treatment plan and to be closer to us at the present time.
We will have to return Tory to Fargo this coming Friday on August 5th for another check up. In some cases the Pegla medicine can cause some blood clotting problems and Dr. K., wants to watch this closely. It appears that for the time being we will be in Fargo every Friday for a check up or for Tory to receive her next dose of the Pegla medicine.
While we were in Fargo this last trip we went to the Krolls Diner and had a wonderful late breakfast/early lunch. Tory, Teresa and I had been talking about doing this for a very long time. Grandma Shirley was with us. Tory ordered pancakes and hashbrowns. We were all amazed at how big the pancakes were when they brought them out to Tory. There were two of them and they were each as big as the big plate they were served on. Tory enjoyed them very much and it was a lot of fun watching her try to eat them both. She managed to get about one and a half of them down. She didn't get to any of the hashbrowns. After we ate we also went to the zoo at Tory's request. We all had a wonderful time together wandering around looking and laughing at all the various animals, birds and other critters. We were all very glad we had stopped there when we left.
We intend to continue to give Tory everthing she needs to continue her battle. We also intend to continue surrounding Tory with love and friendship each day. We really are not able to travel to far from home any longer, the exception would be for Tory's medical appointments in Fargo. Tory is welcome to have visitors and phone calls and we have found these are very good for her and it keeps her occupied with something fun and pleasant.
I would encourage anyone that has been wanting to visit with Tory to try and do so sometime soon. We cannot predict exactly what will happen in the near future.
We are committed to continuing our fight and will continue to hold onto any hope we can find that we can reverse Tory's cancer. However, we have been put on notice once again that things could change for the worse at any time if we don't get it slowed or under control. I will continue to watch Tory in the upcoming days for any side effects that might be caused from her new treatment plans, and make any adjustments that might be necessary. I have not been to work for several weeks and do not anticipate doing so anytime in the near future. Teresa has been working as time permits, but Tory's needs have and always will continue to be our highest priority.
I would also like to extend a special thank you to Robby Kirchoffner in Grand Forks. He is a long time friend. He brought some very special ice cream out for Tory last week and she has enjoyed it very, very much. Thanks.
Moms (Grandma Shirley) sister Deanna and her husband Gary flew out from Missoula, MT., last Tuesday and visited for the evening. We all had a very pleasant afternoon and evening together. Gary made it a point to fly a couple circles around the house when they departed the next morning.
I think that's pretty much it for now. Thank you to everyone for your continued thoughts, prayers and various other support and assistance. Your thoughts and prayers have continued to give us all much needed strength to press on. Please continue to think of Tory when time allows. She continues to be very strong, determined and courageous and gains much of this strenth from yours thoughts and prayers.
Love Troy and Family
Saturday, July 23, 2005 6:55 AM CDT
Good Morning:
It has been a very busy couple weeks since my last update. Tory has continued to give her battle everything she has, while Teresa has been trying to work so we can continue to make ends meet. I have been busy everyday at home trying to find future treatment options for Tory. Grandma Shirley has been busy with a little of everything and does her best to help each of us in some way everyday. I don't know what we would do without Grandma Shirley's help at the present time.
Tory's lab work the last couple weeks has remained pretty good. Although her white blood cells have dropped a little each week, they are still very good and much better than they were only a month ago. Dr. Kobrinsky and his staff are very pleased with how well all of her counts rebounded after she began her latest treatment program using the Cyclophosphamide and Orafin (Nititisnone) chemo medicines. She has continued to tolerate this treatment plan very well compared to the Chemo Cocktail treatment plan she was on before this.
Tory's appetite remains very good and she eats lots and lots of small meals everyday. I tease her about being a little "eating machine". We are continuing to adjust Tory's diet as I learn more about natural ways to help her body battle the cancer. Grandma Shirley has done an excellent job incorporating and balancing her daily needs for certain nutrients and foods. Good Job Grandma Shirley!
Tory's overall condition at the present time remains pretty good. In her opinion she feels better than she thinks she did only 2 or 3 weeks ago. Her right eye has been starting to do its own thing more often recently, but Tory works around that by using her patch. Her balance and coordination remain okay under the circumstances and she pretty much continues to move around freely inside the house and outside when she is on smooth level surfaces without any assistance. She usually holds onto one of us for support when walking over uneven surfaces or longer distances.
Since she doesn't have the energy to stand for long periods or to walk long distances, I have now obtained a wheel chair for Tory. At the moment, this is primarily used only for the recent fair and mega shopping trips at the mall and so forth. It is very helpful and prevents her from getting wore down as quickly. Her mind is still very clear and sharp and you can't sneak anything by her. I think she gets wore down a little quicker recently and usually wants or needs a mid day nap. The recent heat wave is probably a contributing factor in this.
Dr. Kobrinsky has decided to move Tory's next MRI and check up that were scheduled for early August up to next week. Tory is now scheduled to have her MRI on July 28th and we will meet with Dr. K the following day on July 29th. Therefore we will be spending Thursday night in Fargo and coming back home sometime on Friday. Tory will also have her labwork done again on Tuesday July 26th, here in Grand Forks at the Air Force Base Clinic. She also continues to meet with her counselor Dr. Tyler once a week and this has been very helpful and comforting for her.
My personal efforts to find other treatment options outside the local region have not been as successful as I had hoped. The Duke University Brain Tumor Center has indicated that they would require Tory to discontinue all present treatment for 3 to 4 weeks before they could see her and then they might have something they could offer her. This is apparently necessary to allow all of the present chemo medicines to be flushed out of her body. They have not specifically stated what any treatment they might be able to offer her would consist of. The Neuro-Oncology department at the Children's National Medical Center in Washington DC has said pretty much the same thing and they didn't think they could offer her anything more than Duke could. They also did not specify what if any treatment options might be available under the present circumstances.
Dr Kobrinsky's office has agreed to continue their research for any new treatment options that might be available, however, there are apparently not a lot of known medical options available at the present time. Tory's case manager is staying actively involved and everything is pretty much done so if we find a new medical treatment option it can be reviewed more quickly for approval consideration. We try to have as many things as possible pre-authorized, however, some of the medical treatment and so on require review by a board before they are authorized.
During my research over the last couple weeks I have discovered and/or been informed of some other Alternative Treatment options that I have examined and we are implementing. The first is pretty simple. It involves adding Mangosteen fruit juice to Tory's daily diet. This is a very special fruit that is grown in Asia and Africa, that contains an unbelievable amount of natural antioxidants and xanthones. The second is a little more involved but uses mega doses of Coral Calcium, assorted minerals and vitimans, and a very powerful mineral called Cesium Chloride. This process causes the bodys PH to increase up into the high range of 7.0 and higher which then becomes an Alkaline environment instead of an Acidic environment. There is considerable research over many years suggesting that the free radical cells, cancer cells and so forth cannot survive in the Alkaline environment and they are therefore killed naturally without chemo medicines and so forth. This treatment program is a 33 day program that requires taking and/or applying a variety of natural things everyday in much larger doses than would ever be recommended by the FDA. Several of the items are not sold over the counter and I have therefore had to seek them out over the internet. They are not exactly cheap or covered by our medical insurance either. If all goes well, we should receive everything we need for this by next Tuesday or Wednesday.
The above alternative treatment options are supported quite extensively by scientists, biochemical engineers, various medical doctors and many patients testimonials, although they are not presently endorsed by the US Government or Medical associations. As always, I would glady share any information about my discoveries with anyone that might have an interest in learning more about these.
We have tried to keep Tory busy over the last couple weeks with a variety of activities. We try to get her up and moving about as much as we can each day, although there are days when she just wants to rest and does so.
Some of Tory's recent activities include, but are not limited to the following. On July 12th, one of the local TV news stations (WDAZ, Channel 8) came out and spoke to Tory and did a story about her battle that was televised that night. This was done to publicize how strong and courageous Tory is and to spread awareness about childhood cancer.
On July 14th, we fulfilled Tory's wish to attend the Grand Forks County Fair this year. This was a very special and enjoyable evening. After making sure with Dr. K., that Tory could go on the various rides, I then arranged for Tory to be met at the fair by several of the UND Women's Basketball players who personally escorted her around the midway and went on all the rides she wanted to. Tory was very surprised when she was met at the midway area shortly after we arrived by Kristi Boese, Karla Beck, Danye Guinn Kelsey Maffin and Val Sannes. I am pretty certain that we all had a blast and it was a lot of fun watching Val work at winning a large Sponge Bob Square Pants doll for Tory at one of the tossing booths. We also ran into Deb Steading that evening and she and Tory got to meet for the first time. Deb is the General Manager of the local Holiday Inn, who provided us with a pool side room for Tory's memorable birthday party in March. This was a very special visit. We then got to go into the livestock and exhibit area and looked at all the animals and so forth as well as spending a lot of time visiting with the Martin family. Tory was whooped when we left and assured us that she had a very good time.
On July 15th, Grandma Shirley and I took Tory out to the Bertholds in Arvilla, to help cook and prepare 3 pigs that were to be served that evening at the Larmiore Volunteer Fire Departments pork dinner that kicks off the Larimore Days weekend events. She had a very good time eating pork hot off the cookers and visiting with all of our various friends that were there helping or stopped by throughout the day to visit.
On the 16th, Teresa and Grandma Shirley took Tory into town and they saw the new Willy Wonka movie and then did some power browsing at the mall. They also picked up the new Harry Potter book Tory was eagerly waiting for. As you can imagine, it did not take Tory long to start reading the book once she returned home.
On July 20th, Tory had some of her past and present classmates (Neil, Becky and Brittany) over for the afternoon and they had fun visiting, looking at her Disney World pictures, watching movies and playing card games. It was a lot of fun to see Tory around her friends and classmates and busy catching up on all the latest gossip.
On the 21st, Grandma and I took Tory over to the Iversons Farm for a mid day picnic and swimming party. Although Tory didn't want to swim, she had a blast visiting and eating all the good food that was provided.
Last night many of the neighbors dropped by to visit and we all sat around outside by the camp fire goofing around and visiting. It was a very pleasant and relaxing evening that we all needed.
Once again we would like to thank everyone that stops by to visit and check on us all. Tory really enjoys and needs this very much. We also appreciate all the phone calls, emails, letters, cards, packages and so forth. Thank you all for your contributions.
Chris Bogenrief, a long time family friend has also been very busy recently designing a very special bracelet for Tory, and then working to make them available to people all around the United States and other parts of the world. This is being done to spread awareness about Tory's battle and childhood cancer. Questions regarding the bracelet can be directed to Chris by calling her at home (701) 599-2355 or by email at (cbogenre@gfhnrc.ars.usda.gov).
Well, once again I probably missed some things but I think I covered most of the main highlights. Tory continues to be very strong, determined and courageous in her battle and we are doing everything we can think of to give her the tools she needs to win this fight! We thank all of you for everything you have or are presently doing to support our team during this difficult time! Please continue to think of Tory when you can since she continues to gain much strength and determination from your thoughts and prayers.
Love;
Troy and Family!
Saturday, July 9, 2005 5:03 AM CDT
Good Morning:
Tory has had a very good and very busy week. She really looks much better than only a few weeks ago. She seems to have more spunk and her appetite will not stop. She pretty much snacks or eats non-stop throughout the entire day.
The new chemo treatment Tory is receiving appears to be much easier on her and is being tolerated quite well so far. Once again she is now taking daily doses of two oral chemo medicines. This first is Cyclophosphamide and the second is Orfadin (Nitisinone). This will continue indefinately and at least until we return to the Maris Cancer Center on August 5th for Tory's next checkup and MRI.
The chemo cocktail I referred to previously that Tory was administered on May 19th consisted of five chemo medicines. They were Cisplatin, Vincristine, Dacarbazine, Hydroxyurea and Lomustine. These were considered to be the next best standard treatment beyond the treatment provided in her clinical trial. Once again these did not appear to have any visible success and were discontinued.
Over the last week I have been very busy trying to identify and coordinate any future treatment options that might be available. This is not progressing as well as I had hoped. Everything on our end at the base and the Maris Cancer Center is going well, but trying to find a Children's Hospital that will consider Tory's case has been much more difficult. Once that has been done, then our insurance provider will have to approve our out of region request for specialized treatment. So far our new case manager has been very easy to work with and very helpful in trying to obtain all the information they will need to complete their formal review.
So far I have contacted the Brain Tumor Center at Duke University in North Carolina and am in the process of trying to speak to someone at the National Children's Hospital in Washington DC. My conversation with Dr. Sri Gururangan, Director of Pediatric Clinical Services at the Duke Tumor Center, did not go as well as I had hoped. He felt they might have some form of treatment they could offer Tory but he said she must discontinue her present chemo treatment for at least 3 weeks before they could see and evaluate her. I will be trying to discuss this further with Dr. Kobrinsky this coming Monday. I am still trying to connect with one of the members of the Neuro-Oncology team at the National Children's Hospital. We are led to believe that they may have some available treatment options but at the moment this remains unknown or whether they are willing to even see Tory. There is still an awful lot left to do!
Tory continues to look very good under the present circumstances. She continues to remain very strong, determined and courageous. She also appears to be fairly comfortable except for the recent heat we have been experiencing. It is clear to see that this really drains her energy levels. Since our home does not have central air conditioning, we try to cool things down with a farily small window mounted A/C unit and several floor and ceiling fans. Tory's eyes have looked pretty good recently and have been staying in sync. She says she has a little blurred vision when she gets really tired. Other than that she isn't wearing her patch much and continues to read, do word puzzles and so forth. Her hair has really thinned out but she has not lost it all at this time. Since she has changed chemo medicines, that might not happen now. Her speech is good and her balance and coordination are pretty good. She remains determined to do as many things for herself as she can. Tory gained at least five pounds between May and June which was very good news. At the rate she continues to eat it is likely that she will gain at least that much in the next month. Her face is once again beginning to get a little puffy from the steroid use, but there is nothing that can be done to prevent that.
Tory had her labwork done this past Tuesday. We were informed that all of her counts have increased to very good levels. Tory's medical team was very excited about how much her counts had increased in just the last week. Her white blood cells and other infection fighters are now well up into the satisfactory range.
Tory has had a lot of visitors over the past week and we had a very good Independence Day celebration here at the house last Sunday, which was concluded with nearly a two hour fireworks show in our driveway. Our friends Sara and Rene from the twin cities area arrived here on Saturday morning and spent the weekend. It was very good to see and visit with them. They departed Monday afternoon and it was hard to see them leave.
Some of Tory's visitors over the last week included; local friends and neighbors, Rene & Sara, Tom, Lisa and Dillon Haupt, Jeff Bancroft, Tom, Christine, Derek and Bret Bogenrief, Tory's classmate Brittany and her mother, Kayle, Jensen and Carson Thompson, Kjersti Dyb, and Tory's physical therapy instructor at the school Lynn Kubousic.
We also attended the special Make-A-Wish event in Fargo yesterday at the airport and got to see the Navy's Blue Angels precision flying team perform. There were a lot of very special kids and their families in attendence. Our MAW and Navy hosts were very gracious and all the kids were treated like roalty. After the pilots and crew members were done with the show they then came over and visited with all the kids. A couple very precious group photo's were also taken to help remember the occasion in the future.
Well, I think thats pretty much it for now. Hope this helps everyone stay up on whats going on in our life and how Tory is doing. I should also mention that the cards, letters, emails, packages and so forth that Tory and the rest of us have been receiving are very much appreciated. I should also mention how much having Grandma Shirley here has helped us in many ways. She stays very busy with many things each day and has done a wonderful job helping with Tory. Thank you so much mom for being who and what you are!
Thank you to all of you for your thoughts and prayers. We all continue to receive strength to continue our efforts and fight from them. Please continue to think of Tory when you can! As I have said before she is and continues to be a very strong, determined and courageous little lady!
Love to All;
Troy and Family
Friday, July 1, 2005 1:05 AM CDT
Good Morning:
I must once again share some very difficult news regarding Tory's battle with her cancer. The MRI that was done this past Tuesday (June 28th) morning determined that the cancer is continuing to spread and it did not appear that the chemo treatment she received in May had much if any success in slowing the cancers progression. We were informed that the cancer continues to regenerate itself in all the original locations and is also spreading around the outside of her brain.
Due to these developments Dr. Kobrinsky (Medical Oncologist) did not feel there was any use in continuing the Chemo Cocktail treatment plan. This was a difficult decision and the fact that Tory did not tolerate the treatment very well had a lot to do with it. It was his belief that if the cancer was going to respond to it this would have occurred during the first dose. We were informed of this in May before the first Chemo Cocktail was administered.
Dr. K once again informed us that surgery and/or radiation were no longer available options either. There is simply too much in multiple locations to try and remove with surgery and Tory has already received the maximum amount of radiation allowed, in her first phase of treatment.
Dr. K was very pleased with how good Tory looked during his exam. He seemed surprised that she still has as much control over everything as she does. He noted that this could change at any time if her cancer continues to progress.
We were once again devasted by the above developments, but when asked we agreed without any hesitation that the fight was not over and we had to give any other potential treatment options a chance to succeed.
During a lengthy discussion with Dr. K, he informed us that other trials that are or were underway were not having much if any success with the type and grade of tumor that Tory has. It was his opinion based upon his involvement with the Childrens Oncology Group that there simply wasn't any other accepted treatment options available at the present time. After more discussion, Dr. K. informed us that any further treatment would be purely experimental and like the Chemo Cocktail there would be absolutely no guarantees that the treatment would work. However, we were informed that the treatment plan he was recommending would be much easier on Tory (much better tolerated) than the Chemo Cocktail treatment plan was.
With little hesitation we all agreed that Tory would begin the treatment plan Dr. K was recommending. This involves taking two oral medicines. In addition, Tory will also continue taking her steroids, anti-siezure and other necessary medications. She no longer has to take the anti-biotics. We were informed that the new chemo medicines are much better tolerated and Dr. K did not anticipate that Tory would have much if any nausea or other side effects.
Tory began the new treatment plan right away on Tuesday afternoon and evening. So far she has tolerated it very well and not experienced any nausea or other visible side effects. In fact she has been pretty energetic considering everything we have been through so far this week. Tory will take the chemo medicines daily for the next month and then we must return to the Cancer Center on Aug 5th for another MRI. She must also continue to have labwork done each week so that her blood counts can be monitored.
Since Tory's treatment plan changed, Dr. K did not feel there was a need for her to have the port (arterial line) surgery and it was cancelled.
We returned to the Maris Cancer Center on Wednesday morning so Tory's blood counts could be checked and then we were free to return home. Since we were all beat and there were numerous thunder storms occurring between Fargo and Grand Forks, we elected to stay in Fargo overnight and return home the next day.
As always, our stay at the Ronald McDonald House was very pleasant and everything we needed was provided. I really don't know what we would do without the RMH and all the wonderful staff members that are always ready and willing to help us in any way necessary.
We have a lot of unknowns ahead of us again at the moment and will continue to take things a day at a time. Tory will be allowed to live her life to the fullest extent. We will continue to surround her with love and friendship each and every day.
We encourage any of you that have been waiting to see and visit with Tory to do so! She definately has many things to share with you all and as you know she loves to visit. She also like to play games (Monopoly, Phase 10, etc..), and has been known to watch a movie or two from time to time.
Tory was full of spunk yesterday and just continues to amaze us all. It was a lot of fun listening to her talk about all the dogs in her "Canine Book" during our drive back from Fargo. Prior to arriving at the house, her wish to eat at the Panda Buffet was also granted and boy did she eat good. I must say that her appetite has not been a concern recently.
At the moment we plan on being right around this area for the holiday weekend. Renee and Sara Emerick (Longtime Family Friend/Extended Family) will be coming from the twin cities on Saturday morning to spend the weekend with us. We are very excited about this and have not seen them since last August.
Tory would really like to do some fireworks and I am going to try to figure out how to make this happen. I would somehow like to figure out a way to provide her with a grand grand show here at the house!
I thinks that's about it for the moment. We all remain very committed to continuing this battle with everything we have. Even with the recent developments, Tory remains very strong, determined and courageous.
Please continue to think of Tory and say a prayer for her when time allows. We need this very much at the present time and Tory continues to gain much of her strength to continue her very courageous battle from them. She is such a very special, beautiful and wonderful little lady that has been forced to grow up much too fast!
Once again we want to thank everyone for everything you have and continue to do to assist us during this difficult time. We could not have made it this far without your generosity!
Love Troy and Family
Tuesday, June 28, 2005 3:13 AM CDT
Good Morning:
Tory's condition has improved considerably since my last update. Her blood counts continue to climb and she is basically at or near normal margins in all areas once again. It is easy to tell she is feeling much better and much more comfortable. Her wit and energy have returned and she is full of spunk nearly each day. The mouth and throat sores have disappeared and she is a little eating machine once again. Because of this we have been trying to let her do whatever she wants to each day.
The Friday before last she got out and rode her 4 wheeler for the first time this year. It wasn't a super long ride, but enough for her to say she did it and have a little fun. It was good to see her outside doing some of the things she came to enjoy last summer. The next evening our neighbor had a big party with many guests from all over the U.S. Tory got to get out and visit with many of these friends and enjoy some pretty awesome fireworks that were fired off after dark. She really enjoys sitting outside around the camp fire and visiting with anyone about anything. She also got to watch over one of Magoo's new little Chihua puppies that was brought up from Louisiana and is only 4 months old. Her name is Diamond and she and Tory hit it off right away.
Tory had a restful week last week and her blood counts were the best they had been recently. This was great news for us all and we were all relieved that we didn't have to return to the hospital for any intervention.
Teresa's mother, Grandma Mary Pat and her husband Rick arrived here on Friday from Memphis, Tennessee, to visit over the weekend. This was the first time they had seen Tory since her cancer had been diagnosed. Tory and Grandma Shirley met them at the airport when they arrived and then went into Grand Forks and I am told that they then had a wonderful lunch before eventually coming out to the house that evening and beginning a pleasant visit. We celebrated my 44th birthday that evening by barbecuing some big juicy hamburgers on the grill and eating them outside. All of the grand parents had a good time visiting with Tory over the weekend and there were a lot of laughs and smiles shared.
This past Sunday we all went into East Grand Forks and attended a benefit breakfast for Tory and the son of another man that works with Teresa. This was sponsored by Teresa's employer (Ideal Aerosmith Inc) and the East Grand Forks VFW Club. There were also other businesses that contributed, however, I don't know who all of them are. As always we were very humbled by everyones generosity and thoughtfulness. The food was great and Tory had a very good time visiting with the many people that attended. It was clear to see that she is feeling much better and is once again very talkative and interested in what everyone has been doing.
That afternoon we had a wonderful turkey dinner at our house with all the grandparents and then Grandma Mary Pat and Grandpa Rick said there farewells and returned to Grand Forks in preparation for their early morning return to Memphis. They left yesterday morning.
We return to Fargo with Tory today. Her appointment schedule was revised last week, since Dr. Kobrinsky will be leaving for Germany later this week and he wanted to see us before he departed. Tory will have her labs done about 8:15 and then have her MRI this morning at 9:00. We will then see Dr. K about 12:30 and review the results and discuss our future treatment options. Over the last several weeks we have learned of some other treatment options using new chemo drugs that Tory might benefit from, however, there are many things to be discussed before this is approved or authorized. I anticipate that our visit with Dr. K today will be much longer than normal. We were all very restless over the night thinking about what the MRI will show us!
If everything goes well, we anticipate that Tory will have her arterial line (port) put in sometime tomorrow morning. This is a surgical procedure and she will be sedated during the procedure. As a result she will have to be admitted into the hospital and remain there under observation for an indefinite period of time to ensure there are no problems. After that is done we hope that she will receive her next dose of CHEMO COCKTAIL most likely on Thursday. Once again this is an all day thing. We again intend to stay in Fargo after the chemo medicine is administered and check in with the cancer center the following morning, before we begin our return home.
All of the above schedule is subject to change except for todays lab, MRI and meeting with Dr. Kobrinsky. Therefore, we will remain flexible and take things day by day. We will be staying at the original (North) Ronald McDonald House while we are in Fargo. Grandma Shirley will be with us and is looking forward to visiting with everyone at the RMH.
We don't have any real big plans yet for the 4th of July. I know that Tory would like to shoot off a few fireworks, but we will have to wait and see about that. No matter what she will most likely have to have lab work done sometime next week. We hope that her next six weeks is not as rough as her last six weeks were. Tory has been invited to attend a special Make-A-Wish event in Fargo next Friday July 8th. All past and present MAW kids have been invited to view a special performance by the Navy's Blue Angel precision flying team that day and meet the pilots and crew members at the Fargo Air National Guard Base. Tory is very excited about this and we hope that we will be able to attend.
Well, I think that about covers it for now. Thank you all for your continued thoughts and prayers. Tory is once again more determined than ever that we are going to fight her cancer. Her strength, determination and courage gives us all fuel to keep going! Please continue to think of her when you can and remember that she does get a lot of her strength and courage from your thoughts and prayers. Thankyou again for everything all of you continue to do to help us during this difficult time.
Love Troy
Thursday, June 9, 2005 5:51 AM CDT
Good Morning:
To begin with I have finally got around to changing the photos on Tory's web page. I hope you enjoy them.
Since my last update, Tory has continued to have a rough time. Sunday morning she woke up complaining of a mild headache, mouth and jaw pain, sores in her mouth and throat, and said it felt like her throat was closing up on her. She also had a fever that had hit 100 and was slowly continuing to climb. As a result, we got her into the emgerency room at Altru Hospital here in Grand Forks to be evaluated.
Blood was drawn and throat cultures were collected. It was determined that her blood counts were continuing to drop and her immune system was basically as low as it could get. Dr. Lund was notified and responded to the ER and discussed Tory's condition and his recommendations with us. It was decided that she would get two injections of antibiotics and could go home overnight, but she had to return the following day for another blood transfusion after her developements had been discussed with Dr. Kobrinsky at the Maris Cancer Center. We were also instructed to continue to watch her very closely and return immediately if her temperature reached 101 degrees.
After our return home, Tory as well as the rest of us, were very restless and did not sleep well if at all during the night. The next morning it did not take long to be contacted and instructed to get Tory on into the Altru Hospital as soon as we could for a transfusion. Upon our arrival at the pediatric clinic, blood was again drawn so Tory's blood type could be confirmed and her counts could be updated. At that time her plateletes were only 32,000 and had been 40,000 the day before. Her white cell count was at 300 and was 180 the day before, but of most concern was her red blood cell count that was now at 8.1. Based upon the above it was decided that Tory would receive a red blood cell transfusion.
Tory was then taken over to the pediatric ward at the hospital and checked into her room. It was decided she would receive two full units and did without any major problems. These are given very slowly and the procedure wasn't completed until late in the afternoon. It was then decided that she would remain in the hospital overnight for observation. Her vital signs remained strong overnight and her temp began to drop and remain below 100 degrees. It was determined that her condition had stabalized and she was released to go home early Tuesday afternoon. She really looked like she felt much better after her release.
When we left we were informed that Tory had to return to the clinic on Wednesday to have her blood counts checked again. There was still a lot of concern that her plateletes might need to be rejuvinated again. On Tuesday evening after Tory had woke up from a nap, she was definatley more perky and alert.
We returned to the clinic as instructed on Wednesday and a short time later were informed that Tory's platelets had dropped down to 15,000. As a result, she was returned to the hospital and received another platelete transfusion. Once this was completed we returned home and Tory laid down and went to sleep. She slept very hard for the next several hours before she finally woke up briefly to have a snack and take all of her remaining medications and vitamins, and then went back to sleep in my arms. Besides the fatigue from the chemo treatment and blood transfusions, Tory is also experincing many of the known side effects of the chemo treatment that cause the sores and pain in her mouth and result in a considerable amount of discomfort or mild pain.
For the moment we have been instructed to keep watching Tory very closely for possible signs of infection or a fever. Since her red blood transfusion on Monday, her temp has pretty much been under control and remained below 100 degrees. She is extremely vulnerable to infection at the moment since her white blood cell count is so low, and this has even required changes in what she can and cannot eat. She wasn't very pleased to hear she could not eat fresh fruits and vegetables for the time being, since she does love her watermelon. Since her immune system is so vulnerable, we also have to keep her isolated from any potential germs that could cause even the slightest problem. As a result, she has to stay at the house and is unable to have any visitors for the time being. She isn't exactly happy about this either, but as always she is willing to do what is necessary.
We have been intructed to return Tory to the pediatric clinic tomorrow (Friday) so that her blood counts can be checked again. At that time, it will be decided if she will need any additional intervention in the near future. We pray that she does not, since her little arms are all bruised up from all the IV's and needles that have been stuck in them over the last week.
Tory continues to do her best to remain upbeat, but it is evident that she is whooped and uncomfortable. For the moment we are unable to give her too much of anything for her discomfort, since we can't risk suppressing a fever that would indicate more serious symptoms. She has been prescribed what is referred to as "magic mouthwash" that helps with her mouth and jaw discomfort.
I really don't know what else to say for now. We are all pretty restless at the present time, and just continue to take things one day at a time. We are hopeful that Tory has a good day today and gets lots of rest. We are also hopeful that this will make her feel better and the worst of her treatment symptoms and side effects for this last chemo cycle will be behind us.
Thank you to all of you for your continued thoughts, prayers, support and generosity. Your contributions have helped us make it this far, and allow us to keep moving ahead. Please continue to think of Tory when you can and be assured that she continues to gain much strength from them.
Love and Thanks to All!
Troy
Sunday, June 5, 2005 4:33 AM CDT
Good Morning:
Well it has been a little over two weeks now since we were informed that Tory's cancer has reoccurred, and to say the least we have been very busy! This development along with Tory's wish trip to Florida has presented us with a new set of challenges and put us back into the unknown for the time being. For the time being, we have again found that everything works best when we just take things day by day and don't try to plan anything further ahead than that. We are hopeful that this will change as we progress in Tory's next phase of treatment!
Tory was able to travel to Florida and fulfill her wish trip in the Orlando area. This was a very magical and memorable trip for us all. We departed on Tuesday (May 24th) from the Grand Forks Airport. Tory was picked up here at the house that morning by a very large limo. After we arrived at the airport, she received a very big send off from several students of Red River High School and Diane and Brittany Wells. As I have mentioned before, the RRHS students dedicated their Make-A-Wish fund raising activities this year to Tory and her trip.
We were exposed to several very generous acts of kindness that day as we traveled to Orlando. Tim Holstrom and the other Northwest Airline staff at Grand Forks Airport, upgraded our tickets to 1st class for our flight to Minneapolis. Tory was very excited about this and had a good time. Another unidentified gentleman who was seated in 1st class surrendered his seat to us and sat in coach so we could all sit together. This allowed a friend of Tory's that was also flying out that morning to sit with her. After arriving in Minneapolis our seats were again upgraded for our flight to Orlando by the Northwest representatives there. After we boarded our flight, Tory met the flight crew and pilots and was shown the cockpit where she got some pictures taken and was presented her wings. She was also introduced to all the passengers over the intercom before take off.
When we arrived at Orlando, we were greeted by volunteers from the Give Kids The World Village (GKTW) and taken to get our bags and then pick up our rental vehicle. This helped an awful lot, and the vehicle we received was much more than expected. We then drove ourselves to the GKTW, and as we entered it knew it was a very magical and special place. We would find during our stay that the staff did not have the words "no" or "that cannot be done" in their vocabulary. They are dedicated to making each guests stay a memorable one and go out of their way to take care of each wish childs individual needs! After a brief check-in, we were escorted to our Villa (#188) and then took a little time to relax and absorb everything that had happened that day. That evening we wandered around the village grounds and Tory visited with many of the different staff members and other families that were there. I attended the parents orientation meeting and recevied the in processing package that contained a variety of information for our activities during the upcoming week. I met Tory and Teresa back at the villa and we were all ready to try and get some rest. We were all relieved to finally be in Orlando, however, we were all very excited about all the things we would be doing over the next several days.
I should add that it was very warm in Orlando when we arrived and stayed that way throughout our trip. Although the heat felt good, it was a big change from what we were used to in Grand Forks. We don't know what we would have done without the air conditioning in our villa and vehicle.
On Wednesday morning we got up and had breakfast at the Gingerbread House where all the special guests and their families can eat breakfast and supper. While eating Tory got sick but quickly recovered. This is the only time she would get sick while we were there. We then walked around a bit and then prepared for our first day out at the theme parks. Tory's first priority was Disney Worlds Animal Kingdom, so that is where we went. It was great seeing the big smile on Tory's face as we approached and arrived at Animal Kingdom. We explored around the park and then went on the Safari ride. It was very rough and as realistic as it could be under the circumstances. When it was done we went on the walking tour thru other areas that contained animals. By the time we were done Tory was pretty wore out and ready to head back to the village. She really enjoyed being able to see the Rhino's, Hippo's, Elephants and Gorilla's. When we got back to the villa, Tory took a nap. Teresa's brother Jeff and his family arrived at the village that afternoon, and we spent the evening visiting and walking around the village. Tory also made her first trip to the Ice Cream Parlor, and we all enjoyed that very much.
On Thursday morning Tory met Mickey and Minnie mouse at the village Theater and we all got our picture taken with them. We then went outside and Tory met Goofy, Pluto and Jasmine and also got her picture taken with them. We then departed for the Magic Kingdom and met Jeff and his family there. We all spent the day experiencing all the magic that it provides. The highlight of the day was the roller coaster that Tory, her cousin Robyn and I went on in Space Mountain. This was a very wild ride inside a dark mountain. We all survived but I was sure glad to get off that thing. Tory also drove the indy cars. During this I learned she isn't ready to drive yet! Jeff and his family departed that afternoon and we returned to the village. Tory was once again wore out and we just relaxed when we got back.
On Friday we went to Universal Studios. I think this ended up being one of our favorites. As always Tory was treated like roalty! We spent the majority of our time in the Island of Adventure area. We went on the Dudley Dooright Rip Saw Falls and Jurassic Park River Adventure rides. We all got very wet and had a blast. Tory also met and got her pictures taken with Popeye, Olive Oyl, Bluto, Woody Wood Pecker, and Bullwinkle the moose. This was a lot of fun. Tory then got wore out and as we began to depart we got caught in an unexpected thunder shower. It began pouring and before we could find shelter we were all soaked. Tory and I laughed and Tory decided we should just keep going back to the vehicle. We did so since we were already thoroughly wet from head to toe and when we got back to the vehicle in the parking ramp, we stripped off whatever clothes we could without becoming totally indecent. We then returned to the village and relaxed. Tory took a nap and then we went down to the fishing peer for the evening fishing contest. Although Tory didn't catch a fish, she did set a new record for catching turtles. It was quite a sight to see her reeling in these things and they put up a real good fight. I was relieved to see them get off before we had to figure out how to lift them up onto the fishing platform. We all had a lot of laughs about this.
On Saturday we just hung out at the village and let Tory get some much needed rest. She liked being able to sleep in. Teresa's sister Mary Glyn and her family came up to visit that afternoon from Vero Beach. Tory was very excited to see more of her cousins. After they arrived we all visited at the villa for a while and then went down and spent the afternoon at the pool. Tory and her cousins had a wonderful time swimming. We then made a stop at the ice cream parlor and returned to our villa where the kids all had pizza. Everyone had big smiles on their faces and we had a great time. Mary Glyn and her family eventually returned to their home that evening.
On Sunday we went to Sea World. This was another very important stop on Tory's agenda. It was terrific and we had a great time. Tory got to see the sea turtles, sting rays, dolphins, manatees and Shamu the killer whale. She also got to pet the dolphins and feed them and the sea lions with small fish. Prior to leaving we also had some of the biggest hamburgers I've ever seen at one of the park restraunts. Tory eventually got wore out and was ready to leave, however, with not a whole lot of coaxing she did think she could handle a little shopping on the way back to the villa. As a result, we went to Downtown Disney and Tory and Teresa got to shop as much as they wanted at all the Disney stores. We then had a relaxing moment sitting on the river front before we departed and returned to the village.
On Monday morning Tory had her picture with Mickey and Minnie Mouse retaken since there were some problems with the first one. After that we finished packing in preparation to depart that afternoon. Our flight was scheduled to leave Orlando at 5:40 pm. Although we had obtained a late checkout time, we were all ready to get home and we all agreed we would head to the airport early and see if we might be able to get on an earlier flight. After checking out at the village, we got to the airport, dropped off the vehicle and checked in at the ticket counter. We were told we could depart at 1:12 and did so. After we arrived in Minneapolis, several hours ahead of schedule, I tried to call our house since I suspected my mom had arrived there while we were gone. I was right and informed her that we would be returning early, which unfortunately spoiled some of her plans for our return later that night. We were late getting out of Minneapolis since our plane had some mechanical and weight problems, but we eventually arrived in Grand Forks about 7:30 pm., which was still several hours earlier than originally expected. The limo was waiting for us and when it dropped us off at the house, Grandma Shirley was waiting for us and gave Tory lots of hugs and kisses. Tory then spent the rest of the evening telling Grandma all about her trip!
Overall, Teresa and I feel that Tory held up very good during her trip and it was very apparent that she enjoyed it so very much! With the exception of the one nausea episode and some increased fatigue, she was full of smiles and laughter much of the time we were gone. We thank everyone that made this possible since it was a very special gift that would not have been possible without all of your hard work and help! Words cannot express how much this meant to all of us.
Since our return home, we have struggled with some new issues in Tory's treatment. We took her in to get her blood work done at the air base on Tuesday afternoon and were informed later that afternoon by the Maris Cancer Center and a pediatric doctor at the base, that her counts were basically in the toilet. This was pretty much expected and usually occurs sometime around the two week mark following the chemo cocktail. It was determined that her white blood cell and platelete counts were nearly as low as they could get. We were instructed to keep a close eye on her and watch for signs of a fever. If this developed we were to get her into the hospital immediately. We were told that Dr. Kobrinsky would decide the following day what if any intervention was recommended. After speaking to the cancer center again on Wednesday, we were instructed to continue monitoring Tory's condition for signs of fever, and that things were being set up with Altru Hospital here in Grand Forks, for blood intervention on Thursday.
On Thursday morning we took Tory back to the base and she had another blood test. We then returned home and a short time later we were called by the cancer center. We were instructed to take Tory to the Altru Hospital as soon as we could and that she would need to receive plateletes. Since her white blood cell count had increased a little, they didn't recommend doing anything for that at that time and would just wait to see if her body regenerated them on their own. It was apparent that her plateletes were low, since she began bruising very easily and the place where her blood was drawn that morning did not clot as quickly as it normally does. We took Tory to the hospital as instructed and she was seen immediately by the staff in the pediatric department. The procedure was explained to us by Nurse Sue Hafner and Dr. Lund. We were then taken to the pediatric ward at the hospital and the procedure was completed. Before administering the plateletes, Tory received some tylenol and and another mild aneshetic. The procedure was pretty uneventful and took a little over an hour to be completed. When it was done, Tory ate some spaghetti and then we departed and returned home. She then laid down and began to rest, which for the most part she has continued to do since her return.
Friday and Saturday have been what I would describe as rough days for us all. To make things worse, Tory is presently cutting her rear bottom molars and this is causing her a considerable amount of discomfort. We also discovered her first mouth sore on the roof of her mouth. This is a known side effect of the chemo cocktail. She has been very restless, uncomfortable and wore out. It is very hard to see her this way and feel like there is nothing we can do to provide her relief. So far her temp has stayed down which is good. We are giving her some random doses of tylenol and orajel to provide some minor relief for her mouth pain.
Yesterday afternoon Tory finally appeared to feel a little better and perked up much more than she had over the previous two days. However, she did not sleep very good last night since she continues to have what she calls bad dreams when she tries to, and has developed a mild headache already this morning. We will continue to watch this very closely today for signs of fever or any other symptom that would warrant immediate medical intervention and in turn seek it if necessary.
We are scheduled to take Tory back to the air base tomorrow and have her blood work done so that it can be determined how she has responded to the platelete intervention.
Due to recent developements in Tory's condition, we were unable to participate in the Relay For Life event on Friday as we had planned. For the time being we must also prevent Tory from being exposed to any colds or viruses that could effect her. As a result, she will have to remain at home and cannot have any visitors for the time being. We are hopeful this will change in the near future, and that we can start getting her out a little sometime soon.
Tory's next formal appointment at the Maris Cancer Center is scheduled for the end of June. At that time she will have a thorough exam and MRI, and then have her next chemo cocktail the following day. I expect that we will be in Fargo for at least two if not three days when this occurs.
Until then we are still trying to provide Tory with what she needs at the present time, as well as trying to decide if and when we can return to work. Grandma Shirley being here is a blessing and has and will definately help in the short term.
Thank you all for your continued thoughts and prayers. Tory once again needs these very much. She remains very strong, determined and courageous and gains additional strength and encouragement from your contributions. Please continue to think of her when you can. Once again, we are all very grateful for everything you have all done to assist us in one way or another.
Love Troy and Family
Saturday, May 21, 2005 4:51 AM CDT
Good Morning:
I sit here this morning feeling forced to provide an update that I prayed I would never again have to address, however, recent developments in Tory's recovery leave me no other choice. But in doing so I still feel it is necessary to touch upon all the many other events Tory has also been involved with since my last update and that is where I prefer to begin.
To begin with Tory and I were able to attend the Red River High Schools week long Make-A-Wish Fundraiser on I believe Mar 16th. This was a very special day for us! Tory spoke to a health class that morning and shared some very powerful thoughts about her illness and recovery. She became very emotional and I finished her conversation for her. She had several of the students, and staff and me in tears. She quickly rebounded and we then went into the cafeteria and spent both lunch periods letting the students meet and visit with her. During this time she received a beautiful bouquet of flowers from part of the boys State Champion Hockey Team and was serenaded by a 5 or 6 member boys acapella singing group. They sang "My Girl" to her and she got very embarrased. She was then presented a hockey stick that was signed by all members of the hockey team and got a photo with the entire team. She sure had a big smile on her face while she was surrounded by all those "hot" looking boys. We learned the following Monday that the fundraiser was a huge success, and it raised enough money to cover Tory's trip to Disney World. We would like to thank everyone at the school for all their efforts.
We returned to Fargo on Mar 22nd and Tory saw Dr. Konweko, her neuro-psychologist. He was very pleased with Tory's progress and felt it was time for her to have the full neuro eval to determine or measure how her brain was functioning. After some delays with referrals and so on, we returned to Fargo on April 27th and the exam was completed. We returned on May 6th and reviewed the results. Dr. Konweko was very pleased with Tory's performance and felt we had got her on a good day when the tests were administered. He explained that there didn't appear to be any problem with how the outer layer of her brain was operating and he was pleased. The fairly minor deficiencies that were discovered involved what he referred to as the "white" matter or tissue in her brain. For the most part he suggested that she was struggling a bit with processing and organizing large and more involved groups of information which was not unusual under Tory's circumstances. He felt that with some adjustments in her IEP at school, she would continue to excel in her studies. He was also very suprised to hear that to that point she was not taking a brief nap or rest each day at school, and recommended that if she was getting tired that should be provided.
Towards the end of March Tory began having occassional nausea and vomiting episodes. In the beginning this wasn't really alarming and pretty much considered to be a minor side effect of her recovery. It appeared that her stomach had began over producing acid and this was believed to be the cause. We began giving her Xantex again in an effort to help reduce the acid production. This worked with some success. It was mainly a undesired inconvienience for Tory at that point, but something she was willing to accept as part of her recovery. It was suspected that the cancer treatment had been much harder on her stomach than we thought and we simply had to help it during the healing process. Since her full strength vitamin supplements also seemed to set this off, we changed them back to milder childrens brands which did help a little to begin with.
We returned to Fargo on April 11th and Tory saw Dr. Kenien her Indiocrinologist (hormone or growth and development doctor). He again conducted a full exam and was very pleased with her continued development. There were not any major concerns, except for the fact that she had lost 15 pounds since her last visit with him in January. On this date she was now down to 105 pounds. He felt Tory's nausea episodes might be caused by her adrenial gland possibly under producing enough adreneline for her bodys needs. Labwork was done as usual and that afternoon we were informed that her pituitary, thyroid and adrenial glands all appeared to be working fine. There was not any other explanantion at that time about why she continued to have the nausea episodes.
Over the next four days between March 11th and 14th, Tory threw up nine times at various times during the day. On the morning of the 14th she threw up 3 times in less than an hour after she woke up and began complaining of a minor headache and a short episode of blurred vision. I obviously freaked since the nausea episodes were becoming more frequent and were now associated with symptoms associated with her original tumor. I contacted the Maris Cancer Center and informed them of the situation, and within a short time was recontacted and informed that Dr. Kobrinsky (Medical Oncologist) wanted Tory brought to Fargo as soon as possible for an exam. We left as soon as we could after Teresa got back to the house from work.
When we arrived we were informed that Tory was already scheduled for an MRI and after her IV port was put in we were off to the MRI lab. As has become the recent norm, the procedure was uneventful. Once completed we returned to the Cancer Center and Tory was allowed to lay down and rest while we waited for the results. I was out in the hall staring at a vending machine when Dr. K walked by and said the results are done and lets go review them. We all went in the exam room where Tory was laying down and Dr. K then stated "Tory, you continue to amaze me". He then explained that her MRI was the best one she had ever had since her treatment began and there was no evidence her symptoms were being caused by a reoccurance of the tumor. He then added that the interior of the tumor that was gamma knifed had disolved and was now clear although the outer rim was visible but had shrunk some more in size. There was a huge sigh of relief from Teresa, Tory and I when this info was shared with us.
Tory and Dr. K then visited and he began to suspect that we were all nervous wrecks and beginning to suffer from what I will call "post treatment syndrome". Tory also admitted that she had been having some unusual dreams and had alot of things on her mind regarding her treatment, recovery, and future. Dr. K strongly recommended that we as a family should seek some counselling to help us begin to lessen the load we all had bottled up inside, and we all seemed to agree it was time to do so. Dr. K then recommended that Tory begin taking a anti-depressant for two reasons. The first was to help with the PTS and that it would also help stimulate her appetite. We were also instructed to change her over to Prilosec in hopes that would provide better results in reducing the stomach acid and in turn eliminate the nausea episodes. Tory was then administered a good dose of fluids by IV which really reenergized her and she really perked up and spoke about wanting to eat. We left feeling much better and assumed that Tory's symptoms were primarily being caused by stress and anxiety since the MRI was unremarkable.
Tory had her final school dance of the year on April 22nd, and due to popular demand I was again asked to be the "Tune Man". I accepted and once again rocked the gym with great dance music and we all had a great time. When we got home, friends had already started to arrive at the neighbors for the weekend motorcycle show in Grand Forks. The big party the following day (Saturday) was alot of fun and we all got a chance to visit with alot of people we hadn't seen since last year around the same time. Tory was outside and mingled for a fairly long time. She really seemed to enjoy sitting around our campfire listening to the good music and visiting with all the gals that gathered around that area.
We had our first appointment with Dr. Tyler (Psychologist) on the evening of May 9th. We all liked him very much and felt our time was well spent and very helpful. We all shared some things as a group that we had been worried about sharing with each other at home. We made arrangements to continue with Dr. Tyler after our return from Disney World.
On the evening of May 10th, we met with the Wells Family in Emerado and had dinner and visited about the upcoming Relay For Life event in Grand Forks on June 3rd. We met the Wells through the Maris Cancer Center. Their daughter Brittany is also a cancer patient, and they live in Larimore which is about 20 miles west of us. Brittany is the captain of their RFL team and asked Tory to her a co-captain this year. Tory gladly accepted and we all had a very relaxing time speaking about each of the girls treatment and many things that only we as parents and cancer kids can identify with I guess you could say. It was just a very pleasant and relaxing time for us all.
As May approached, we began thinking about school almost being out and getting ready for Tory's wish trip to Disney World. Tory's last day of school was scheduled to be May 19th, and once again we were scheduled to leave on Tory's trip on May 24th.
Between April 25th and the present, Tory began appearing more fatigued and resumed having occasional nausea episodes. We could only believe that Tory was finally just showing some of the effects from her treatment so far and was finally running out of gas. Arrangements were made at school, and she was allowed to take naps when she needed them. These became more frequent and she just continued to need more and more rest. We probably kept her home from school at least five days during this period and simply let her sleep and in many cases she would sleep for much of the day. Her nausea spells continued on a random basis and she would inform us she was having brief mild headaches from time to time. The headaches were very low on the pain scale 1 to 1 1/2, and usually only occured once a day. They were also usually in different locations and not the same place each time. Based upon what the MRI showed in April, we continued to believe she was just run down from all her treatment and efforts during the school year and finally just needed to catch up on her rest. Since her symptoms were more prominent during the weekdays when she had to get up and get to school instead of on the weekends when she could sleep in, we also suspected that something was going on at school that was bothering Tory and in turn causing her anxiety and/or fatigue. I guess I also believed that we were now beginning to treat her treatment as I referred to it.
Tory stayed home with me on April 16th since I had some sort of bug. She slept the majority of the day. She went to school the following day, but got sick shortly after I dropped her off and eventually laid down and rested. When she got up she threw up again, but then ate lunch kept it down, began to feel better and finished her afternoon classes. She also wanted to attend and perform in her schools spring concert that evening and we did that.
Prior to leaving Teresa and I visited with Tory and talked a little about her symptoms and things that might continue to be bothering her. During this time we also observed that her right eye appeared to be getting a little lazy and wasn't moving smoothly and/or in equal balance with her left eye. She stated that her vision was okay and she really didn't notice this development.
She looked beautiful in the outfit she selected, and she stood along the risers and sang the songs she and her classmates performed. She was much more energetic than she had been for several days.
When we returned home, it did not take Tory long to fall asleep and she slept very good. When I woke her up the following morning (May 18th) I immediately noticed that her left eye was even worse than the night before. It wasn't in balance with her right eye and its movement was very jerky. Tory then admitted that she was having some blurred vision and also stated for the first time that she had a mild headache in the center of her head. After she explained where this was located, I realized this was where her original tumor had been. Once again she also stated that she was very tired and just wanted more sleep. I let her lay back down and then spoke to Teresa at work. I informed her I felt it was necessary to call the cancer center and she agreed. I then did so and left a detailed message on the nurse line. I was recontacted within the hour and instructed to get Tory down to Fargo as soon as we could for another exam and MRI. We departed about 10:00 after Teresa got home and we got Tory ready to go. While helping Tory out to the car I also realized that her balance and coordination seemed much worse than it had been.
When we arrived at the Maris Cancer Center about 11:10, they quickly got Tory's IV put in her right hand and drew some blood samples. We then took off to get her MRI completed, which ended up being a bit of an adventure in itself since there had been some miscommunication about where we were supposed to go. The MRI procedure itself was uneventful and Tory slept thru most of it. We then returned to the cancer center and waited for the results to be read and then review them with Dr. K. It seemed like we sat in the playroom area for hours until we were moved into one of the exam rooms to meet with Dr. K.
To make a long story shorter, Dr. K sat down before Tory and then informed HER while Teresa and I listened, that her brain cancer had reoccurred and the outlook was not good. We all feel into an immediate state of shock! Dr. K stated that there was significant reoccurrance in all areas where the tumors were originally located and a new area that was developing in the space between her skull and her brain (cerebelum) around the back side of her head. Just like us he was very suprised and disturbed by this development. He was unable to even attempt to offer any explanation of how the Pet Scan in March and the last MRI in April could show no signs of activity and then that days MRI could show what it did.
Tory was informed that her prognosis was not good, and there was not any type of known treatment that could now save her life. We were informed that surgery would not be possible and resuming the use of the Temador chemo medicine was unlikely to do anything favorable. Dr. K informed us that if we elected to try additional chemotherapy there were no guarantees and in most cases this would only prolong Tory's life for an indefinite period but there was little if any chance it would successfully kill the cancer. Untreated, Dr. K felt that Tory will possibly survive until sometime this fall. With additional treatment he couldn't say how long that might be extended. He added that in some cases the cancer simply won't respond to the medicines and there was no guarantee Tory's form of brain tumor would.
At this point we were all in tears, shock, and everything was a big blur. You just don't think rationally at a time like this no matter how hard you try. We could see that Dr. K was doing everything he could to keep from becoming overcome with emotion as we were. It was very hard to hear all of Tory's very adult questions for Dr. K regarding her life. Dr. K shared some of the future symptoms that would develop and I just felt like throwing up. After we collected ourselves a bit, we all discussed Tory's planned Make A Wish trip, and I insisted that her wish be fulfilled as planned. Teresa agreed and Dr. K felt the same way. He didn't feel there was any reason to delay or postpone it, and that any additional medical needs Tory might develop in the next few days could be handled by medical personnel at the Give the Kids the World Village.
With little hesitiation, Teresa and I then requested that Tory be given whatever the appropriate chemotherapy option would be under the circumstances. We didn't believe there was time to wait or waste, and it was necessary to see what effect if any it would have in slowing the progression or killing the cancer as soon as possible. We were informed that it could be administered the following morning and arrangements were made to do so. Tory supported our decision without any additional questions or concerns. Tory was also put back on steroids and anti siezure meds prior to our departure.
After a little more time to collect ourselves we then exited the exam room and were immediately surrounded by all the wonderful staff members who were all as emotionally upset as we were. There were many tears shared by everyone. It was very difficult for everyone that had been involved in Tory's care so far. The staff made arrangements for us to stay at the Ronald McDonald House overnight, and when we felt up to it we drove over to the new RMH. Upon arrival, we were greeted by Gail (Executive Director) and her staff, and again surrounded by very special people well into the night. Corrine (House Manager of North RMH), brought us dinner and stayed with us visiting and so on until after 9:00. We don't know what we would have done without the RMH, Corrine and Gail, and everyone else that smothered us at that point.
We returned to the Cancer Center the next morning (May 19) and Tory received the chemo treatment which I refer to as the "Chemo Cocktail". She was administered a total of 5 different chemo medicines and 2 doses of steroids. Three of the chemo medicines and the steroids were given by IV and two of the chemo medicines were in pills and taken orally. She was a very brave little patient and didn't complain once. The steroids had an immediate effect on her appetite and she ate almost non stop throughout the day. She and Teresa did take a nap between about 11:00 and 1:30. The procedure went well and there were not any problems while everything was administered.
While the treatment was being administered, I was coordinating Tory's new medical needs and so forth with the MAW office in Fargo. By the time the day was done, all of Tory's possible needs had been updated and arranged. This would not have been possible without all the teamwork that occurred between the cancer center staff, the MAW staff and the Give Kids the World Village staff in Florida.
That afternoon before we departed, Sharon and Myra with MAW stopped by the cancer center and gave us our travel package as well as some suprises for Tory. It was unbelievable. They brought Tory several new outfits with accessories to wear on her trip and she was so very excited. That evening after we returned to the RMH, Tory made it a point to try everything on and model it. It was good to see her so happy and excited.
Tory had a rough time getting to sleep Thursday night and became very emotional. We assured her she was entitled to do so, and she eventually feel asleep in our arms as we held her in bed. She then slept very good and didn't have any noticeable side effects from the treatment. After checking in with Pat at the cancer center, we were cleared to return home and did so after checking out of the RMH and saying our farewells.
We got home yesterday about 2:00, and after Tory took a nap, she came outside for a while and we enjoyed the hot afternoon and visited with the neighbors for quite a while.
Until further notice, Tory is now required to have a combined blood count completed each week. At the moment we are now scheduled to return to Fargo on Jun 29th. That day she will have labs, an eval and MRI. She is then scheduled to receive another "Chemo Cocktail" the following day. If I didn't mention it before, the procedure takes about 9 hours to complete.
I don't know what else to say at the moment. We are trying to stay busy getting ready for our trip. We have an awful lot to do in a very short time. We will be driven to the airport in a limo on Tuesday morning and then be off to Disney World. We are all committed to making this trip everything it is meant to be, even in light of all the recent developments. We will return to Grand Forks very late on Monday the 30th. We will then be busy with Tory the remainder of the week. My mother (Grandma Shirley) is in the process of coming out to assist us and we expect her to arrive shortly after we return. Teresa's mother (Grandma Mary Pat) will also be coming out sometime in the near future after our return.
We have all vowed to remain very committed to doing everything we can to reverse the recent developments. We continue to believe that somehow Tory will beat the odds. Tory as you already know is a very determined and courageous little lady, and has reaffirmed that she isn't going to give up. As you might expect, we will take everything one day at a time, and do the best we can each day. Things are a whole lot easier that way.
I'm sure I missed some details that might be of importance to some of you, however, I can't think of what they might be at this time. I will resume providing more frequent updates, and this should help me keep things a little more organized.
We thank you all for your continued support, your thoughts and your prayers. I once again ask that everyone think of Tory in your own way whenever you can. We all feel this and need it very much at this time. Tory continues to be very strong, determined, and courageous and gains much of her strength from your thoughts and prayers.
Love Troy and Family
Thursday, March 10, 2005 8:55 PM CST
Good Evening:
I really don't know how to start. At the present time I remain overcome with emotion regarding the exciting and much awaited news that all of us have been praying for the last several months. To begin with Tory had a wonderful birthday, which was followed by our being informed during her checkup on Monday that all of her treatments have successfully eliminated her cancer. I don't think it could get any better than that!
Well, here I go. As I stated in my last update, we celebrated Tory's birthday this past Saturday on March 5th. She turned 12 years old. This birthday celebration was very important to all of us. The day began with all of us and three of Tory's girlfriends/classmates meeting in town and having lunch at the Paradiso Mexican Restraunt. It was supposed to be a surprise, but Teresa couldn't keep it from Tory. We picked this location because Teresa and Tory really like their special deserts and they have a big celebration for birthday guests. We all had a wonderful feast and then joined all the employees and other patrons in singing happy birthday to Tory while she wore a big sombrero. It was a lot of fun.
Teresa and the gals then headed to the mall for awhile and then went to see the new Vin Diesel movie. I can't recall the name. While they were doing this I headed to the Holiday Inn and got checked into our room. It seemed like it took forever to pack everything into the room, but I wanted everything to be just right when the gals arrived. I had all the gifts, the cake, a variety of snacks, a trash can of pop on ice, and of course the many suitcases of wardrobe all situated in the room when the gals finally arrived about 5:00 p.m. They appeared to be very pleased when they entered. As you might expect the first priority was to get wet in the pool and see what the boy situation looked like! It was so good to see Tory splashing around in the pool with her friends. Little did we know that other students from her school would also be there for different events that weekend, and all of the kids had a great time together.
After a couple hours, we convinced the gals to take a break and Tory opened her gifts and we again sang happy b-day to her. Then it was back to the pool for them. A couple hours after that we convinced them to eat and the pizza's arrived. Then it was back in the pool for another swim. Our close friends Joyce and Scott stopped by and we visited in the room while the girls continued their activities around the pool. We were eventually able to get the gals out of the pool and into the room around 10:30 or so. I then returned home to check on the dog (Axle) and Teresa had the priviledge of supervising the late night activities. I am told that after several polite requests, she was finally able to get them to sleep sometime around 2:00 a.m.
I returned the next morning (Sunday) at about 9:00 a.m. and found all the gals back out in the pool. Teresa informed me that they were up about 6:00 a.m. and ready to swim, however, she kept them in the room until about 8:00. The gals continued to swim until about 10:00 or 10:30, when we finally gave them the final order to get out and start getting packed up. That went fairly well, and after everything was loaded into the fleet of vehicles we had to bring, we then enjoyed a wonderful brunch in the restraunt. Needless to say, they were all very hungry and ate very well. I then took everyone home, and Teresa returned home to get things packed up for us to leave for Fargo.
I feel it is important to mention that our room at the Holiday Inn was provided to us at no charge by Debbie and Tom Steading who manage it. Their contribution definately made Tory's birthday one that all of us will always remember.
After Tory and I returned home, we got everything loaded up and Tory, Teresa and I went on down to Fargo. We felt this was necessary since the weather forecast for that night and the following morning was not too good, and doing this would prevent any added stress for us the next morning. We arrived about 3:30 p.m. After checking into a motel, we all just flopped out for awhile. As you might imagine, we were all thinking pretty hard about Tory's schedule for the following day. I explored around a bit, and we all decided we would walk to the restraunt next door and eat supper. We had a very nice meal and a very pleasant and relaxing time. We then returned to the room and continued to remind Tory she needed to keep drinking water. She complained many times that she was floating and felt like she was going to pop.
We all got settled in and tried to get some sleep as the winter storm moved into the area. I don't know that any of us really slept that well. Tory and Teresa said they did, but I know I sure did not. We started getting up the next morning around 5:30 and couldn't help but think about Tory's appointments and what the P.E.T. Scan would reveal. We checked out and then arrived at the Maris Cancer Center about 7:45.
We checked in and Tory and I went back to Dr. Kobrinsky's office area where we found Shiela and Tory was prepped to have her IV port put in. After her hands and arms were warmed up with the heat packs, Shiela got the port in on the first try. It has been a long time since this happened. Tory's blood was then drawn for the lab work and then we were walked over to the radiology department to wait for her P.E.T. Scan. We were all pretty fidgity. A short time later the technician came out and led us back to the prep room.
Tory was required to lay down and instructed that she would have to remain still for the next hour. We were informed that they were going to inject a glucose solution into her which would be distributed throughout her body by her blood. Tory was informed she would have to keep her eyes closed and could not speak for the first half hour. These steps ensured that the glucose was distributed evenly throughout her body. Teresa stayed with her while I departed until she was ready to begin the scan. We were informed that the exam would consist of two scans. Each would begin with a C-Scan. When I returned Tory was already in the P-Scan room. The equipment was similar to the MRI and C-Scan equipment in appearance. Tory was placed on the table and then immobilized with a special jacket that was securely fastened around her body between her hips and shoulders. Her head rested in a special V-shaped headrest.
I sat in the room next to her during the first portion of the scan. I had to leave for the C-scan before the second exam began. At that time I was allowed to be in the control room. It was an amazing sight to see how this technology works, and I remained in the room as the images of Tory's brain materialized on the computer screens. I will admit that I looked at the many images very hard trying to see any indication that might be unfavorable and I did not. However, I realized that I was not in any way qualified to intrepret what was being seen. When the scans were finished they had taken one in 2-D and one in 3-D. Tory was then woke up since she had fallen asleep, and removed from the table.
I think we were done by about 10:00. Our next appointment wasn't until 12:45. We all continued to be pretty fidgity. We then went up to the 4th floor where the Children's Hospital is and visited with some of the nurses and stopped in to see Derek Davis who was scheduled to have surgery later that morning to remove a calcium deposit on the back of his head. After our visit, we went down to the cafeteria and Tory ate a good meal of pizza, mozzarela sticks and an ice cream snickers bar. We sat around and visited with all the different hospital staff members that would walk by and then headed over the the pulmonary lab for Tory's respritory treatment. We arrived early, but since Tory is a regular customer they fit her in and she was done much sooner than she was supposed to be.
We then made the long walk back to the other end of the hospital to the Cancer Center. By this time we were all thinking pretty hard about what her P-Scan would show. We weren't scheduled to see Dr. K until 1:30 and we got there about 12:30. Therefore we went into the lounge area and tried to find things to do to pass the time. Hillary (Child Life Specialist) came in and kept Tory busy playing some games. Before long, one of the nurses came in and began taking Tory's vitals. Her temp and blood pressure were good, and when she was weighed she had only lost 1/2 pound since her last checkup the month before. This was good news. We then returned to the lounge and tried to relax as we waited to see Dr. K. About 1:30 he entered briefly and stated that the P-Scan films had still not been read by a radiologist. As we have come to expect, he was not pleased about this and stated he would be back shortly. We all laughed a bit because we knew this meant he was off to make someones day very miserable.
Sometime about 2:00, Pat (Oncology Nurse) poked his head in the lounge and informed us we needed to move into one of the exam rooms so we could speak with Dr. K. After Teresa and Tory exited, he added that it would be a quick visit. At this point, I realized that he was hinting the news would be good, however, Tory and Teresa did not hear this. We entered the exam room and Tory took her usual place on the exam table as Teresa and I sat in the chairs next to Dr. K's desk. A few minutes later Dr. K entered. He then asked Tory what she was going to do now, and as always we looked at him thinking well whatever you recommend. Dr. K then informed Tory that her P-Scan was normal. We all looked at him like okay, what does normal mean. He then repeated that it was NORMAL. At that point we realized he meant it was normal, no concerns, no problems identified, it was normal, in other words, there was no evidence of any cancer remaining in Tory's beautiful little brain.
At that time Tory let out a loud gasp as Teresa realized what had been said and broke into tears. I was speechless and basically just sat there watching the excitement on Tory's face and the look on Dr. K's face that the treatment plan had accomplished what it was intended to. This was such an emotional moment and it felt like a very, very, very heavy weight had just been lifted from our shoulders. I am certain that we then went into a state of shock, and I know that even up to today I get the shakes and have a numb feeling throughout my entire body.
Dr. K informed us that the small little piece of tumor that had remained appeared to be nothing but dead tissue, and that all the tissue around the original tumor site did not show any evidence that the cancer cells had reoccured or survivied.
Dr. K then informed us that the scan was also able to measure the activity levels in the different areas of Tory's brain. It was determined that it appeared that all portions of her Cerebellum was functioning, but at a slower rate than other areas. Dr. K felt this was good news, and he encouraged Tory to keep up the hard work and that given time, this would hopefully improve. It was important that there were not any visible areas where the tissue was dead or inactive.
Dr. K then began discussing the next phase of Tory's treatment plan. We were informed that she will continue receiving her respritory treatments for 3 months following her last maintenance cycle. That means she has two more to go and her last one will be in June. This is a precautionary measure, while her body begins to recover from the many months of chemo medicine. She will begin having her labwork, checkups and MRI's at 3 month intervals, with the next ones being in early June. She will stay on this schedule for at least the next year. She will continue to be watched very closely under her study and will be followed indefinately. This is one of the biggest benefits of participating in the study!
Dr. K did request that Tory have another Combined Blood Count (CBC) done this coming week, since her white blood cell count was low once again. It was not below the acceptable levels, but he just wanted to keep an eye on it. We will get this done at the Air Force Base sometime early next week.
We all then departed the exam room with Tory leading the way. At Dr. K's request, she then went around informing all the staff members in the cancer center about the good news. Needless to say everyone was very excited! We then participated in a celebration in the lounge with all the staff members. They had a poster for her on the wall and provided her with an ice cream cake from Dairy Queen. Everyone had fun congradulating Tory and sharing her cake with her.
As we were preparing to depart we saw a wonderful lady we grew to know as Grandma Bonnie sitting near the pharmacy. We were all very surprised to see her and very excited that she would be there to hear the good news. I personally feel this was some sort of sign from above, since we had looked for Grandma Bonnie many times since we last saw her in April without any luck. And for whatever reason, she just happened to reappear on this particular day. She was very excited for Tory and we had a good visit with lots of hugs before we finally departed.
Our ride home sure didn't seem to take as long as it usually does, and we didn't really know how to act when we got home since we are usually trying to get Tory fed and her medications started on her first night of a chemo cycle. We were all very glad to get home, and a lot of phone calls were made to share the news with all of our friends and family.
Tory slept very well that night and it was apparent that she was whipped when Tuesday morning came around. As a result I let her sleep and she finally began to move a little about 10:30. She then insisted that we go to school so she could tell all her teachers and classmates the good news. I went in with her and stayed there the remainder of the afternoon. This gave me a chance to speak with all the teachers and answer any questions they had. Everyone was very excited about the good news.
We all realize that Tory still has a long way to go in her recovery, but the fact that her cancer is gone sure reenergizes us all for the next phase of her recovery. There is no doubt that she will continue to give it her all. She remains very determined to do whatever is necessary to continue her progress.
I was contacted by the Make-A-Wish Foundation on Wednesday for two reasons. The first was to reconfirm that Tory's wish to go to Disney World in Florida had been granted and discuss a tentative date for the trip. At the moment it appears our trip will be scheduled for May 24-30. This works out well since it is the week after Tory gets out of school.
The second reason was to ask us if upcoming fund raising activities at the Red River High School could be done in Tory's name. I gladly gave permission for that and we reconfirmed our commitment to helping with the fund raising activities in any way we could. I have now learned that the fundraiser will be held next week at the school, and we are making prepartations for the students to learn more about Tory's battle and to possibly even have her visit the school and meet or speak to the students. She is very excited about this and keeps talking about meeting new boys.
Well, I think that's the majority of what has happened over the last 5 days since my last update. I might of missed a few things, but I know I covered the main points. I could probably go on forever, but this has already turned out longer than I expected. As always, we thank everyone for your thoughts and generosity during this difficult time. I mean it when I say we could not have made it this far without it. Your contributions gave us all much needed energy and strength when we felt tired and weak. Thank you so very much for everything you have and continue to do to assist us!
Tory remains very strong, determined and courageous. As you might expect the recent developments have given her added energy and determination that will continue to aide her in her recovery. She has gained much strength from all your prayers and thoughts, and will continue to do so in the future. Please continue to think of her when time permits.
Love Troy, Teresa and Tory!
Saturday, March 5, 2005 3:10 AM CST
Good Morning:
Well, another couple weeks have passed since my last update and Tory seems to be doing much better than she was then. She has finished taking her antibiotics and her sinus infection appears to have passed. She continued to have a little bit of a cough and continued taking some cough medicine for that up until this past Wednesday. She also had a couple more isolated nausea spells, but after each episode she felt better and resumed her activities without any additional problems. Who knows what caused this!
Tory had her eye appointment with Dr. Byers last week as scheduled. He was very excited and amazed at how much progress she had made since he last saw her in October or November. He was excited to hear that she had not worn her patch and/or glasses since they last saw each other. After a few fairly quick tests, Dr. Byers remarked that her progress was borderline miraculous. It was evident that Tory's eyes are following objects during the tests much more smoothly and not in a jerky fashion like they were previously. They also appear to move together much better than they did. She is now able to see objects that she focuses on in front of her as one. She is still experiencing some blurred or double vision with the periphial vision, but she says it is slight compared to what it was before. Dr. Byers felt there was not any need to do anything else at the present time. Based upon Tory's progress so far, he did not feel any type of surgical remedy would be necessary. He recommended that Tory continue doing what she has been doing, and wanted to see her again in three months. As you might expect, we were all very excited about this development!
As of yesterday, Tory had made up all of her missed homework assignments and was caught back up in all of her classes. We are so proud of how hard she works at her studies! She has really benefited from the adjustments that have been made at school, and Teresa continues to do a wonderful job with her here at home in the evenings. Tory and I are both very fortunate to have someone as special as Teresa as our Mom/Wife.
Tory did not have school yesterday, and got to spend the day at Judy Graves. She was very excited about that and spent most of the day helping her bake all sorts of goodies. She also had fun seeing all of her after school friends. Tory has not been to Judy's since the Christmas break and they had a lot of catching up to do. Hopefully as soon as the snow and ice begins to melt she will resume going there after school. It simply became too much for Tory to walk from the bus to Judy's front door in the winter weather, so Teresa and I have been having Tory ride the late bus home to our house since the first of the year.
Well, as some of you might know today is Tory's 12th birthday! I cannot quit thinking about what a wonderful and special gift God gave Teresa and I when she was born. We love her so very much! As you might expect, Tory is pretty excited about this birthday thing. She cannot stop talking about how important it is to be 12 (?), and that means that next year she will be a teenager (scary).
This birthday means alot and we hope to have a grand time celebrating it. We celebrated her birthday last year at the Ronald McDonald House. That was just after she had been discharged from the hospital and began her phase one chemo and radiation treatments. She was really wore down then and was still not feeling to good. Things are different this year. She is wound up and ready to party.
The Holiday Inn in Grand Forks has given us a pool side room for tonight and 3 of Tory's girlfriends/classmates will be staying there with us. I think we are all going to a movie first and then to the motel to check in. After that who knows what will happen. There will be some swimming and I have heard a lot of boy watching. I hear there will also probably be pizza, pop, chips, birthday cake, and playing lots of video games in the arcade. There is also a rumor there might be some presents. I don't expect any of them to get much sleep tonight. Tomorrow morning we will all enjoy their Sunday Brunch before checking out. We anticipate that Tory will have a grand time.
Once we get Tory home tomorrow she must rest up for Mondays trip to Fargo. She isn't supposed to do anything strenuous or tiring tomorrow, and she is also supposed to drink at least 8 or 10 glasses of water. She will also have to eat up, since she cannot eat anything after midnight. We will be leaving for Fargo much earlier than normal, since she has to check in for her P.E.T. Scan at 8:00 a.m. This is done at the Roger Maris Cancer Center in the Radiology Department and is scheduled to begin at or about 8:30 a.m. It helps that Tory already knows just about everybody in that area and stops in to visit them just about everytime we are there for her monthly checkups.
I anticipate that they will probably draw Torys blood for her labwork before the scan is administered. After it is done we are off to the Clinic at the other end of the hospital for her to get her respritory treatment. When that is done I'm sure she will be pretty hungry. We will probably eat in the hospital cafeteria and then return to the cancer center to see Dr. Kobrinsky. At that time he will give Tory her monthly exam and review her labs. It is our understanding that we will also be informed of the P.E.T. Scan results and begin to discuss Tory's future treatment needs. This is going to be a very long, emotional and exhausting day! Once we are done with that we will be heading back home.
For the moment, the only other appointment Tory has scheduled this month is her Neuro evaluation with Dr. Konweko in Fargo on Mar 22nd. That will be an all day trip as well.
We remain optimistic that we will receive good news on Monday! There is no other way to approach this. I know that Tory is not looking forward to it and I will have to admit that it also occupies alot of my daily thoughts. However, we have to remember that we found the best possible form of treatment and plan available for her needs and thus far she has hung in there and responded well. We cannot say enough about the Maris Cancer Center and all the wonderful doctors and nurses. Had it not been for Dr. Kobrinsky's extensive knowledge of pediatric oncology and the above phase 2 study, there is no telling what might of happened. I know everyone will be wanting to know what we find out and I will do my best to provide another update early next week.
Once again, we would like to thank you all for your support, your thoughts and/or your prayers. This has helped us get to where we are now, and we firmly believe it would not have been possible without all of your contributions. Thankyou so very, very much from all of us! Please continue to think of Tory when you can. I will assure you that she can feel it and gets much strength and comfort from them.
Love Troy and Family
Saturday, February 19, 2005 4:40 AM CST
Good Morning:
Tory's last two weeks have been busy and presented us with some new challenges that we have not had to deal with so far in her recovery. She remains strong and determined and there is no question her attitude has greatly contributed to the progress she has made so far.
We traveled to Fargo on Feb 7th as planned for Tory's monthly checkup and appointments. She got her blood drawn as soon as we arrived at the Maris Cancer Center, and then we went over to the clinic and she received her respritory treatment.
When we returned to the Cancer Center, Tory was seen by Beth Ann (Pediatric Oncology Physcian's Assistant). Tory received a thorough evaluation and Beth Ann was very pleased with her progress. It was determined that Tory lost about 5 more pounds during the last month, but that is not a major concern at this point. Tory's blood counts were better than the month before. All areas were satisfactory to good, and only her platelettes were low. As a result, Beth Ann and Dr. Kobrinsky recommended she go ahead and start her 10th maintenance cycle as planned.
While we were in with Beth Ann, Dr. Kobrinsky popped in and asked Tory what she was going to do next. We all looked at him and wondered what do you mean. We are going to do whatever you recommend. Dr. Kobrinsky then confirmed that once Tory completed the 10th maintenance cycle, she will have fulfilled the requirements of her clinical trial. This meant that if there was no evidence of a reoccurrance, she would be done taking the chemo medicine. This was very exciting news in many ways, but also a little scarry for all of us.
Dr. Kobrinsky then informed us that Tory would return for her next full checkup on March 7th. At that time she would have her labwork done, her respritory treatment and her next MRI. If the MRI was favorable, her chemo would be discontinued.
As a precautionary measure, Dr. Kobrinsky also recommended that Tory have a PET Scan. This is a new technology which enables the doctors to see if there are any active cancer cells in the human body. The patient is given an IV of contrasting fluid before the test. It is my understanding that live cancer cells absorb the contrasting fluid much quicker than normal cells. Therefore, when the scan is conducted any live or active cancer cells show up as bright spots on the films. Dr. Kobrinsky recommended this be done to reinforce the fact that all tests and MRI's so far strongly suggest that the cancer has been neutralized. We all agreed that the test should be done, and realize it can help us better determine what Tory's future needs will be. We will continue to do whatever Dr. Kobrinsky recommends, and we know he wants to be as informed as possible when considering Tory's future treatment needs.
If the PET Scan is unremarkable, Tory's chemo will be discontinued. She will continue to have monthly labwork and checkups for the time being. She will also continue having monthly respritory treatments for the next few months as a precautionary measure. Over the next year, her MRI's will be done at 12 week intervals instead of the present 8 week intervals. For the most part, her study will ensure that she continues to be watched very closely for the next several years.
When we were done at the cancer center we returned home. Tory began her chemo cycle (#10) that evening. Prior to giving her the chemo medicine we took her temp and it was fine. Late that evening she started getting a fever and it was up to about 102.3 around midnight. She was given some tylenol and that eventually helped bring her temp down by late morning or early afternoon. This is now about the fourth straight month she has had a fever on the first night of her chemo cycle. She got through the cycle without any other major problems. We can't say enough about the anti-nausea medicines she received during her maintenance cycles. These really made a huge difference and eliminated all the nausea associated with the chemo medicine.
As I mentioned in my last update, the school Valentines Day dance was on Friday night. Due to this, we made some adjustments to Tory's chemo schedule and she took her medicine almost immediately after she got home so she could attend the dance that evening. Once again I was the D.J. and Teresa helped chaperone. We all had a good time, and Tory was not only very beautiful in the outfit she selected, but also got her share of dancing in before the dance ended.
On Saturday afternoon we attended the UND Women's Basketball game in Grand Forks. It was held in the Ralph Englestad Arena. The winner of the game would have sole possission of 1st place. Although the Sioux Women started off a little out of cinc, they hung in there and eventually won by a very large margin. We all had a great time. Tory got to visit with the coaches and some of the players before the game. She also got to have a conversation with Pat Sweeney who was broadcasting the game for a local television station.
On Sunday afternoon we attended the Make-A-Wish (MAW) Walkathon. This was also at the Ralph. Tory participated in the opening ceremonies along with other children that had been granted wishes. We also got to meet the Stadstad Family for the first time. Jason is a senior at Grand Forks Central and has been diagnosed with the same tumor that Tory has. It was very good for Tory to get to visit with Jason and for all of us to meet and visit with the family. Tory made one lap around the arena and was pretty tired, so she hung around the refreshment table and helped provide refreshments to the participants. There was a very good turn out and we were very glad we attended.
On Monday afternoon we had Tory's teacher conference at the school. Overall, all of Tory's teachers are very pleased with her effort and performance. She continues to try very hard, and is doing well in all subjects. She has really benefited from the extra help she is receiving in Math and Science.
On Wednesday morning Tory experienced some mild headaches that were combined with some blurred or double vision episodes. This occurred on two separate occassions over a fairly short period of time, while Tory was trying to get ready to go to school. As a result, I made calls to the Cancer Center and the base clinic. We finally decided it would be a good idea to take Tory to the base and have her vitals and blood work checked. Once Teresa got home, we went to the base and Tory was seen by her Pediatrician Dr. Man-Hsio (Manchow). All her vitals were good and her labwork ended up being within acceptable levels, considering she had just completed chemo the week before. Tory's shunt appeared to be working fine and the cause of her symptoms earlier that morning really couldn't be determined.
On Thursday morning, Tory got sick after she took her stool softner and supplemental vitiman pills. She then managed to eat her cereal and said she felt fine. I then took her to school and dropped her off. After I arrived at work, Ms. Burke (Principal) called me and said Tory had got sick in the hallway and wasn't feeling good. Ms. Burke felt we should come pick her up. After informing Teresa about what happened, I spoke to the Maris Cancer Center, and it was agreed that we should take Tory on down to Fargo for an MRI and thorough exam. Once Teresa arrived home with Tory, it didn't take us long to be on our way to Fargo. We stopped at the Cancer Center first and they put the IV port in Tory's arm and then we drove over to the Merit Care Hospital on University Drive. Tory's MRI was administered at that location. After it was completed we returned to the Cancer Center and waited to meet with Beth Ann.
A short time later, Beth Ann met with us and informed us that Tory's MRI was unchanged from her last one on Jan 3rd. This was a huge relief to us all. The results indicated that Tory's shunt appeared to be working fine and was not responsible for causing any of the recent symptoms. The MRI showed that Tory was developing a rather serious sinus infection, which was believed to be the root cause of the recent symptoms. Due to this Beth Ann prescribed Tory some antibiotics and recommended she stay home from school on Friday and continue to rest through the weekend. She also asked to be recontacted next week and informed of how Tory was responding to the antibiotics. We then departed Fargo and returned home.
Tory is continuing to take her antibiotics as instructed and will be resting throughout the weekend. She did have some more mild headaches last night around the time she was scheduled to take her next dose of medicine, but we were told this might occurr for the next few days until the infection is controlled by the medicine. She does not have school on Monday.
Tory has an eye exam Monday afternoon with Dr. Byer at the Altru Clinic. This was supposed to occur in Jan but was rescheduled by his office.
Tory is scheduled to return to the Maris Cancer Center on Mar 7th for her monthly checkup, respritory treatment and the PET Scan. She will not be having another MRI since it was done this past Thursday. This is also when we will learn what Tory's future treatment needs will be.
At the moment the only other appointment Tory has scheduled is on Mar 22nd. This will be with Dr. Konweko (Neuro-Psychologist). Tory will be having a full neuro exam that will last almost the entire day. It is our understanding this will help determine how Tory's brain is recovering from all her surgeries and treatments.
Well, I think that's about it. As you can see it has been a busy couple of weeks for us. We continue to be so very proud of Tory and how hard she is working during her recovery. She is still a very strong, determined and courageous little lady. Once again we thank everyone for the things you have done to assist us. As I have said previously, we could not have made it this far without your generosity. Please continue to think of Tory when you can. I assure you that she can feel your thoughts and prayers and gains much strength from them!
Love The Vinson Family
Saturday, February 5, 2005 3:35 AM CST
Good Morning:
Well, many more weeks have passed in our lives and Tory continues to remain very strong, determined, courageous and busy! I apologize that I didn't provide any updates last month. I realize that many of you rely on my updates to stay informed about Tory's progress, but I guess I must admit that we got caught up in all the things going on over the holidays and it is also not getting any easier for me to do these.
As I mentioned in my last update, Tory did get to meet the UND Women's Basketball Team in December. She attended an informal team meeting which pretty much ended up being an hour or more of her simply visiting with the players and coaches. She had a blast. We then attended their home game that weekend and we all had a great time. We are hoping to go see them play again this Saturday evening if everything goes well.
Tory also did a wonderful job performing at her schools Christmas concert. Grandma Shirley got here the day before and was also able to attend. Teresa, Mom and I were very proud of Tory and really enjoyed the performance. She sang a variety of songs with the choir and also played a beautiful song on the piano with her music teacher. Once again, it was absolutely wonderful to see her performing again and we were all filled with great joy and emotion.
We have now completed all of the implementation process for Tory's Independent Education Plan (IEP) at the school. This will be used to address any needs Tory might have in the future regarding her classwork, as well as for implementing her in school Physical, Occupational and Speech Therapies. Tory now has teachers aides available to help her on an as needed basis in Math and Science. She has also began working with each of the individual therapists once a week. We also anticipate that sometime fairly soon she will begin to resume Physical Education (Phy Ed) class with some modifications.
This last 9 week grading period Tory did very very good. It is obvious that she takes her studies very seriously and always puts them before other things she would like to do in her free time. I can't say enough about how hard she tries, and it continues to be difficult for her when she has difficulty in subjects that were so easy for her before. She raised her Math and Science grades to a B and C and all other areas were A's. We were again very pround of her and made sure she knew it!
Although Tory was supposed to see Dr. Byers (Eye Expert) again in January, that appointment was cancelled by his office and it has still not been rescheduled. Tory continues to go without her glasses or patch. She says she is now able to focus clearly on objects she looks at and that only the periphial's around them are blurry or slightly doubled. We contine to believe that her vision will continue to improve with time, and we are not rushing to seek any other remedies for the time being.
We returned to Fargo on Jan 3rd for Tory's monthly checkup and so forth. She had her MRI and once again it was favorable. We were informed later that day by Dr. Kobrinsky that it was basically unchanged. The remaining little piece of tumor had not increased in size and might have again decreased in size a little, little bit. Dr. Kobrinsky was once again very pleased with the results.
As is usually the case, Tory's Pentamidine (Respritory) treatment was uneventful. We then returned to the cancer center and Tory had her formal checkup with Dr. Kobrinsky. Like I said above, her MRI was unchanged and he was very pleased. However, we were informed that Tory's blood counts had reached an all time low since she began her cancer treatments. They were still in the acceptable range but on the very low end of the scale. They had not dropped below what is tolerated.
After much discussion about whether or not to proceed with Tory's monthly chemo treatment, Dr. Kobrinsky decided to delay it one week since Teresa and I were undecided about what to do. We were informed that if we proceeded and her blood counts dropped further, she would probably have to be admitted into the hospital and most likely require a transfusion. Teresa and I, Tory too, did not want this. Unlike many other cancer patients, Tory has never had to have a transfusion so far! It was decided Tory would be given the extra week of rest and recoup and when we returned to Fargo the following week for other appointments, her labs would be checked to see if they had improved.
We returned to Fargo the following Monday, Jan 10th. Tory had two appointments that day, besides having her labwork reevaluated. To begin with we met with Dr. Konweko (Neuro-Psychologist). All of us had a very long and productive visit with him. He pretty much could not believe that Tory was the same little gal he had seen a few months before. He was very pleased with her progress and felt that her treatment records suggested that her condition had basically stablized. Due to this, he felt it was now time for his department to conduct a thorough assesment of how Tory's brain is functioning. In other words, for her to undergo a varitety of tests to evalutate what expected and potentially unexpected deficits were identified. We realized this was important since the surgeries themselves caused some degree of what is referred to as Contolled Brain Injury. Dr. Konweko felt this was a good time to do Tory's evaluation and that the results would create a base line to refer to in the future as needed. We were informed the evaluation would be nearly a full day and that he hoped we could get it done sometime in the near future. Arrangements are still being coordinated for this to be accomplished.
Next we saw Dr. Kenien (Indiocrinologist - Growth/Development) doctor. Although he was a bit concerned that Tory had not grown any in height, there were no other major areas of concern at the present time. It appeared that her Thyroid, Kidneys and Liver were still working fine. He also felt all other areas of development were progressing satisfactorily. He had Tory get some xrays taken of her hands and wrists to determine what her bone developement was. We were notified by his office a few days later that the results showed her bone development was equivalent to that of a 13 yr old, and there was not any immediate concern. Dr. Kenien requested that Tory begin seeing him at more frequent intervals so he can begin monitoring her progress more closely.
Next we returned to the Cancer Center and learned that Tory's lab work had improved considerably. This was teriffic news and we were all very relieved to hear this. As a result, Dr. Kobrinsky recommended that Tory proceed with maintenance cycle #9. She then received her IV dose of Aloxy (Anti-Nausea) medicine, and then we obtained her prescriptions and returned home without any difficulty.
We were never really able to determine exactly why Tory's lab work had pretty much dipped to an all time low. Dr. Kobrinsky couldn't provide an absolute explanation. Since we know the chemo medicine and respritory medicine are pretty hard on the bones, it might have been that the effects of these medicines are finally starting to become more evident but that is still uncertain. Teresa and I also suspected that Tory's excitement and involvement in everything during the holidays might have caused some increased fatigue which somehow contributed. We don't know for sure at the present time, and truly hope it was an isolated occurance.
Grandma Shirley finally left us on the morning of Jan 21st and returned to her home in Oregon by train. It was a sad day for us all. I then accompanied Tory to school that day to attend her schools monthly awards ceremony and then help chaperone the 6th, 7th and 8th grade classes trip to Turtle River State Park to go sledding. Tory very much wanted to go on the trip and we all felt she had earned and diserved to do it. Tory received a reading award during the awards ceremony. She was one of only two students in her class to do so. Then we headed for the park and the big hill that everyone would climb many, many times!
Before we left I knew that Tory had to get at least one ride down the hill, and I was very concerned about how we were going to do this. I was prepared for about everything, and was equipped with her ATV helmet and various armour. I took her small otter tail sled that I used to pull her behind the snowmobile with and put two old couch cushions in it which created a very nice and comfortable seat. It ended up being the smoothest and most comfortable ride on the hill. I was so very proud of Tory, as usual she didn't complain about all of my precautions for her safety. She was just so exicted to be with her classmates and being able to play in the snow.
It couldn't have been a better day for sledding. It began snowing that morning and was beautiful. The snow just kept coming, the temps were mild and there was no wind. As we prepared to climb the hill which is several hundred feet up to the top, I decided Tory could do it without her helmet. She was pleased with that decision. She and I then began our first climb. It was a blast, but I must admit I didn't know if she was going to make it. We moved slow and rested frequently. She would fall down in the snow and I would become worried something was wrong and she would just laugh and giggle. She would then just tell me she loved laying in the snow. She also suggested it might be easier to crawl up the hill than to try and walk up it. We finally reached the top and boy were we happy to rest a bit.
Tory sat around with all her different classmates and watched all the others taking their turns going down the hill. While she did this I took her sled for a quick test run and determined everything checked out okay and she wouldn't get up too much speed. After I returned to the top, it was Tory's turn. We got her in and gave her a big push and away she went. It was absolutely wonderful to see her go, although I was also terrifed. All of her classmates cheered her on and you could hear her giggling and laughing the whole way down. I will never forget that moment! I then ran down the hill and we did it all over again one more time. By the time Tory was done with the second climb and ride down the hill she was whipped.
We then went into the warming lodge and kicked back the remainder of the morning. Tory had a blast sitting around chatting with everyone and eating all the snacks they had brought. I kept the fireplace going and we all had a great time. About 11:00 a.m., the school called us and stated that the trip was getting cut short. The bus was coming at 1:00 and school was being let out early because of the approaching storm. I will admit this was a good decision, because by the time Tory and I got home, it was snowing and blowing pretty good. That night we had our first blizzard in a long long time.
We are scheduled to return to Fargo this coming Monday, Jan 10th, for Tory's next checkup and respritory treatment. Nothing else is scheduled. If her labs are good to go, she will begin her 10th maintenance cycle that evening. After this cycle is completed, she will have fullfilled the minimum amount of maintenance cycles required for the study she is participating in under the Childrens Oncology Group. We have yet to hear where we go from there. That will be decided by Dr. Kobrinsky and the other experts involved in her treatment.
Besides having chemo next week, Tory has alot of things going on next weekend. To begin with her school's Valentines dance is next Friday night and she really wants to attend eventhough it will be her last night of chemo. We are trying to make some sort of arrangements for her to do so, but she knows alot of it is dependent upon how things go. We still cannot afford to knowingly let her get run down. On Saturday night she has been asked to attend the UND Women's basketball game, and on Sunday we would like to attend the Make-A-Wish Walk-A-Thon here in Grand Forks. It will be a very busy 7 to 10 days.
I guess the last thing to mention is that we found out last week that Tory's wish to visit Disney World in Orlando, Florida, has been approved and will be granted by the Make-A-Wish Foundation. She is very, very, very excited about this. At the moment we have requested to do this in the last week of May right after Tory is done with school. It sounds like this should not be a problem, but we will not know for sure until later this month. We have been told that we will be there for 7 days and 6 nights. We will be staying at what is called the "Give Kids The World Village". I am told this in itself is a very special place and provides lodging for many of the world wide organizations that grant wishes.
Well, once again I think that covers the main highlights of the last month and a half. We continue to appreciate everything that all of you have done or continue to do to assist us. Please continue to think of Tory when you can. I know she gets much strength from your thoughts and prayers. I assure you that she continues to be a very amazing little lady, who remains very strong, determined and courageous!
Love Troy and Family.
Saturday, December 11, 2004 4:15 AM CST
Good Morning To All:
Well, another month has passed and Chemo Cycle #8 is now completed. To begin with Tory had another terrific month and simply continues to gain strength and momentum in every thing she does. It is again getting hard to keep up with her and her busy little schedule.
Tory was seen by Dr. Byers (Opthamologist) on Nov 17th as planned. It was a very promising visit. We all were very comfortable with Dr. Byers and he and Tory hit it off right away. It was also evident that he is very knowledgeable about Tory's vision problem. After a thorough exam and considerable discussion, Dr. Byers informed us that he didn't feel there was any need to rush into trying to fine tune Tory's vision with surgery or any other procedures at the present time. It was his opinion that her vision is continuing to correct itself and it should be given more time to continue doing so. He was very pleased to hear that Tory is going without her glasses or patch more and more and encouraged her to continue this if she could. He felt that the more she could let her eyes work together on their own the better the final outcome would be. He did change the prisms in her glasses also, since her vision has been improving and the distance between objects in her double vision has reduced considerably. Dr. Byers asked for Tory to return again in mid January to reevaluate her progress. I will note that since her exam, Tory has not worn her glasses or patch that I am aware of and has not had any significant difficulty. She is very determined to do what must be done to correct her vision deficit.
Tory's school work remains very good and keeps her very busy. She has homework almost every night. Teresa and I are very proud of how hard she is working at school and at home completing her homework. Although she is still struggling a bit with science, she has greatly improved her math. Teresa is working with Tory every night on both subjects, and this has helped Tory a lot. A student aide or teacher has now been assigned to Tory's class to assist her with the math and science subject's as well.
We have now completed all the preliminary steps with the implementation of Tory's IEP (Independent Education Plan) at the school. Tory will benefit very much from this. She will also be starting PT, OT and Speech Therapies at the school in the upcoming weeks. She is very excited about the PT and will also be starting to participate in some of her classes gym activities a little more with supervision. She is also very excited about that. Tory's strength and balance are continuing to improve, and she has now began to go up and down the stairs in our house with little or no supervision. She has been working hard for this opportunity and feels she has got her freedom back.
We traveled to Fargo this past Monday on Dec 6th for Tory's monthly checkup at the Maris Cancer Center and her respritory treatment. I also had a MRI of my back and a consultation with Tory's neurosurgeon Dr. Thomas. It was a very wintery day and snowing pretty good when we departed, which created a lot of added stress right from the start of our journey.
Since I have always been in with Tory during her MRI's, she was allowed to sit with me and see things from the other side during mine. She seemed to enjoy this opportunity and made friends with all the people working in the office. She also enjoyed seeing Dr. Thomas later that day and hearing what he had to say about my results. I think Tory and Dr. Thomas spent more time talking about themselves than Dr. Thomas and I spent talking about me!
The respritory treatment was completed without any problems. We then met with Beth Ann (Medical Oncologist-PA) and as usual Tory underwent a very thorough exam. Beth Ann was very pleased with everything she saw. We were informed that Tory's lab work was once again very good and there were no areas of concern at the present time. All of her counts were well above the levels they might expect to see in a patient that has gone through as much as Tory. We again discussed Tory's steroid dose and it was recommended that we begin the process of discontinuing it all together. Although Teresa and I were undecided about this to begin with, after some discussion we agreed that it was appropriate to do this. Simply put, Tory's present dose of the steroid is far lower than nearly all cancer patients would require at this point, and there has been no indication that there is a need to increase it. Due to this if Tory doesn't appear to need it at the moment, it is worth seeing how she does without it all together. This is another very big step. We have already seen a reduction in the puffyness in her cheeks, neck, shoulders etc., since it was reduced the last time. Some of the other effects on her body have also diminished as well. If there appears to be a need to resume taking it, that can be done without any hesitation. It was decided that Tory would take 1 mg every third day over nine days and then she would stop taking it. Beth Ann and Dr. Kobrinsky were confident that this would not be a problem, since her body has been doing very good on the very limited dose she has been taking over the last two months.
After all that Tory was asked to walk to Beth Ann and boy did she put on quite a show. After she reached the end of the hallway and turned around, she then began walking on her tip toes and doing little ballerina periouttes. Everybody got a good laugh out of that. Beth Ann felt Tory's recovery and tolerence of the contining treatment plan were going very good. Tory then got her IV dose of the anti nausea medicine and we picked up her chemo and anti nausea medicine for Cycle #8.
We then departed and returned to Grand Forks. The drive back was as exciting as the drive down and we were very stressed out when we finally got home.
Tory began taking her chemo medicine this past Monday and has now completed the last dose last night. She had a fever on Tuesday morning and was very tired. We really can't explain what caused the fever, and could only think the long day before and stress of traveling to and from might have really wore her down. She stayed home from school on Tuesday and then returned to school on Wednesday. By yesterday she had already got all of her missed homework caught up and turned in. As I stated last time, Tory will continue her maintenance cycles until at least February. Her study requires that she complete at least 10 maintenance cycles. We can't say enough about the anti nausea medicine she is now taking. Since Tory began taking it at the start of each cycle, she has went through the five days without any nausea or any other noteworthy side effects. She sleeps very good each night and this if very comforting to us all.
Tory's next checkup at the Maris Cancer Center and MRI is scheduled for Jan 3rd, 2005. That is the day she will begin her next maintenance cycle (Cycle #9). She will also have another respritory treatment that day. The following Monday on Jan 10th, she will return to Fargo to see Dr. Konweko (Neuropsychologist) and Dr. Kenien (Indriocrinologist).
Between now and then, Tory will be busy with a variety of activities during the upcoming holiday season. This coming Tuesday, December 14th, Tory and I will be going to the new Betty Englestad Arena. Once there, Tory will be meeting the entire UND (University of North Dakota) womens basketball team and attending their practice that day. She will then be attending their home game on Saturday, December 18th, and will be their guest of honor. I have been informed this means she will be sitting on their bench with them during the entire game and also be participating in their halftime activities in the locker room. As you might imagine she is pretty excited about this. I must also mention that this whole thing was arranged by Dr. Sondrol and her staff at the Altru Pediatric Clinic.
After that Tory's grandma Shirley will be arriving here for the holidays on December 20th in time to see Tory's christmas concert at her school on December 21. I have been told that Tory will be performing a solo during the concert and Teresa and I are very excited to once again see her singing on her own. There were times over the last year when it was unclear if she would ever be able to do that again.
Well, I think that should catch everybody up on what's been going on. We are all very busy in a different way now with Tory's recovery and continuing treatment. A lot of times there just doesn't seem to be enough time in each day to get everything done.
We would like to wish everyone a wonderful holiday season. This one will be a very special one for us all. We remain very grateful for everything all of you have and continue to do to assist us during this time in our lives. We continue to feel that we would not have made it this far without your thoughts, prayers and support. Thank you so much for everything you have shared or provided. We will always consider ourselves very fortunate for this.
In closing this morning, I will assure you all that Tory continues to amaze everyone with the progress she has or continues to make in her recovery. Let there be no doubt that she remains a very stong, determined and courageous little lady. Teresa and I as well as many, many others, are so very proud of her and applaud her as frequent as possible for her efforts!
Merry Christmas and Happy New Year!
Love Troy and Family
Saturday, November 13, 2004 5:06 AM CST
Good Morning:
Tory's recovery continues to go quite well with no major problems experienced so far. We have had many good weeks since my last update and Tory is staying very busy at school and at home.
Tory's last chemo cycle (cycle #6) went well without any problems. Some of her blood counts were a little lower than the month before, but these were still not of any major concern and did not indicate any major problems might be developing. My brother Tim was here for a couple weeks in October and went to Fargo with us during Tory's October checkup. He got to meet all of Tory's doctors and also see the Ronald McDonald House where we stayed for so many weeks.
While Tim was here, he and Tory got to do a variety of things together and really had a very good time. Tory really looked forward to riding the bus home from school each day and seeing Uncle Tim waiting for her.
We received the written report from the Coordinated Treatment Center which outlined the results of Tory's evaluation from September. Overall, it was very good and everyone felt her recovery was going quite well. All the therapy departments still feel Tory will benefit from continued speech, OT and PT therapies and we are now in the process of getting these implemented. Since much of this is available through her school, we have been working on developing a formal IEP (independent education plan), which will be used to define her needs and better evaluate her progress. The only other area of potential concern was with Tory's short term memory. The last evaluation indicated that this area had diminished somewhat since her last evalutation. This is being watched closely and steps are being taken to help her with this.
Tory has now received her first report card and overall did very very well. She had some problems with math and science but she received A's in all her other subjects. Arrangements have already been made to provide Tory with assistance in these subjects, and she has already exhibited improvement in both areas.
Tory had her hearing tested on Nov 1st and she pretty much aced the test. No areas of concern were identified. She had an eye exam on Nov 2nd, however, the doctor we met with felt he might not be the best qualified to address her long term needs. As a result we have been referred to his colleague and Tory is scheduled to meet with Dr. Byer this coming Wednesday Nov 17th. I will also mention that for the last 3 or 4 weeks Tory has been wearing her patch and glasses less and less and feels her vision is still continuing to improve. She still has some double vision but it is not nearly as bad as it originally was.
This past Monday, Nov 8th, Tory had her monthly evaluation and checkup at Fargo. It was a very busy day for us all. We started with her lab work and getting her IV block put in. She then had her MRI, and then her Respritory Treatment. We then went and saw Dr. Thomas her Neurosurgeon. After that we returned to the cancer center and she was seen by Dr. Kobrinsky her Medical Oncologist (Cancer Doctor). She then got her flu shot and anti-nausea treatment, before we finally prepared to depart.
The MRI and respritory treatments went well without any problems. Dr. Thomas was first to review the results of the MRI with us. He was very pleased. He informed us the MRI was unremarkable and the remaining piece of tumor had remained the same size or possibly even shrunk a little more. He then informed Tory that based upon the last couple MRI's, he believed that the remaining piece of tumor was now under control. We were all very exicted about this. He also informed Tory how proud he was of her progress. Dr. Thomas stated that her recovery so far had exceeded his expectations and it was evident that Tory is a very strong and determined little girl. He was also pleased that we had been able to reduce the amount of steroid Tory was taking without any problems. He felt this was also a very good thing. After some other discussion, Dr. Thomas then informed Tory that she was now cleared to fly again and as far as he was concerned could also resume riding on amusement park rides. Tory jumped with joy and was very exicted to hear she could go on the rides again.
While speaking with Dr. Kobrinsky he was also very, very, very pleased with Tory's progress. He also felt that the MRI was very favorable and was supported by her good lab work. Her labs were again good and no items of concern were identified. Dr. K joked with Tory many times about why she was even there that day. He was very optimistic that her treatment was working and very proud of Tory for how hard she has been working. Dr. K also discussed the significance of the MRI results considering that Tory had been able to remain at the very low dose of steroids. He indicated that there was not any swelling or potential irritation observed around the tumor, which therefore indicated that the smaller dose of steroid had not caused any complications. This was very good news.
After Tory got her flu shot and anti nausea medicine, we then met Kim and Derrick Davis at the cancer center and visited with them for nearly an hour before departing. Derrick was diagnosed with a brain tumor in October and had the same surgery as Tory. It is also a malignant tumor and he will require chemo and radiation. He is 11 yrs old and lives on the Air Force Base only a few miles from us. We all feel it is necessary to do what ever we can to help Derrick and his family during this difficult time for them.
The flu shot Tory got gave her the flu after we returned home and she had to stay home from school on Tuesday. At one point her fever was a little above 103 degrees. It eventually came down by mid day after she began taking tylenol and overall Tory felt much better by late Tuesday afternoon. She returned to school on Wednesday and spent Thursday and Friday at Judy Graves house.
Tory's last chemo cycle #7 went very well and was uneventful. She slept very well each night after taking the chemo medicine. She took her last dose of the chemo medicine last night. As always we were all very exicted that another cycle is finished. Her next cycle is scheduled to begin on December 6th. As is stands right now, she will continue with the Chemo Maintenance Cycles though at least February 2005. Her study requires a minimum of 10 cycles. At that time a decision will be made about whether that will be it or if they will be continued. Her next MRI is tentatively scheduled for Jan 2005.
Once again we would like to thank everyone for your thoughts, prayers and support. This has been so helpful to all of us. Tory remains very strong, determined and courageous. As a team working together, we are determined to get though this.
Troy and Family
Friday, September 17, 2004 4:01 AM CDT
Good Morning:
Well a lot of things have occurred during the past several weeks, but one thing remains unchanged and that is Tory is a very strong, determined and courageous little lady. We have all been very busy trying to adjust to our new schedules while still trying to ensure that all of Tory's needs are met. We are all very excited and pleased with how well things have went since Tory returned to school on Aug 24th.
I will start by saying that since Tory returned to school, she has attended full days without any major problems or set backs. She has only missed one day so far due to fatigue. That was this past Tuesday after her first night of chemo in Cycle #5. Other than that she has only missed two other days for excused absences when we travelled to Fargo for her medical checkups and evaluations. We take her to school in the morning so she can get an extra hour of sleep, but she is now riding the bus home or to Judy Graves after school. She is also staying after school for an hour to either participate in after school homework club or practice with her cheer leading squad. Yes, with some restrictions, Tory has rejoined her cheer leading squad this year and everyone is very, very excited about this accomplishment. Tory really enjoys her teacher this year and now having her own locker. She is taking her studies very seriously and works very hard to get her homework done. All of her teachers and other members of the school faculty have had nothing but great things to say about how well she is doing so far!
Tory had her Neurological Rehab Assessment last Wednesday on Sept 8th at the Merit Care Coordinated Treatment Center in Fargo. During her evaluation she met with many of her doctors, therapy specialists and others that have been involved in her care so far. I think she was evaluated by (7) or (8) different doctors or specialists by the time she was done. It was a very long day for us all. Overall, they were very surprised at how far she had come since the last time most of them saw her on April 14th, especially when they learned that she had underwent the Gamma Knife Surgery in early August.
Everyone was very pleased with her progress and complimented us all on our efforts so far. Just like last time, the doctors and specialists will complete a report containing recommendations for Tory's future treatment and rehab needs. It was our understanding that they still want her to resume physical, occupational and speech therapy in hopes of fine tuning the progress she has made in her recovery so far. We also got told that we should start getting Tory involved in activities that will begin stimulating her bones and joints in an effort to stimulate her growth. We were also informed that it will be about another year before a determination is made regarding what if any her permanent limitations might be. It was also agreed that we will begin pursuing further treatment for her vision in hopes of eliminating her double vision once and for all. This will probably result in transferring her care back to a Grand Forks vision specialist. Once we get the evaluation report, we will be meeting with the school and if necessary local therapists to develop and implement a therapy schedule.
This past Monday, Sept 13th, Tory had her next checkup at the Roger Maris Cancer Center with Dr. Kobrinsky. She also had her monthly respritory treatment and her first MRI since the Gamma Knife Surgery. The respritory treatment was uneventful as always, and the MRI went fairly quick without any problems.
During our visit with Dr. Kobrinsky (Medical Oncologist) we could sense that he was very happy as we prepared to meet with him in the examination room. He then informed us that he was very pleased with Tory's progress and that all of her lab work was very, very good. He made it a point to make sure Tory knew how proud he was of her and so forth. Dr. K then informed us that the MRI results were completed and we learned why he seemed so happy. We were informed that the MRI showed that the size of the remaining piece of tumor had began to decrease. Prior to Tory's Gamma Knife procedure the tumor was pressing up against a ventricle in her brain. The MRI showed that the tumor had now decreased enough in size that it was no longer even against the ventricle and there was visible space between the two. Dr. K was very excited about this development and we were encouraged that the remaining piece of tumor was now dying and beginning to decrease in size.
This will continue to be monitored very closely in future MRI's. Unless something changes, Tory's next MRI will be in Mid October. Dr. K also agreed that due to Tory's progress, we could further reduce the amount of steroids she was taking and discontinue taking the Xantex. This was another very big step. She is now taking 1 mg of the steroid every other day. This will allow her different organs to begin regaining control slowly.
Dr. K felt Tory was doing well and instructed her to continue with her next chemo cycle #5. After she recieved her IV dose of nausea medicine and we obtained her chemo and anti nausea medicines, we departed Fargo and returned to Grand Forks.
Tory began her chemo cycle Monday night. She was whipped on Tuesday morning and also had a very mild headache. Due to this Teresa stayed home with her and she did not attend school. As I stated above, this is the first day she had missed for any reason other than scheduled medical appointments. Tory felt much better on Wednesday morning eventhough she is taking her chemo medicine this week, and insisted on going to school which she did. She had a good day and when she got home she got right to her homework. After she takes her chemo medicine tonight, she will be done with Cycle #5 and start her 23 days of rest.
She plans of going to school today and staying for cheer leading practice tonight if she is not too tired. I must admit that this has been another first for us all and overall I think we all believe it went very well. We didn't really know what to expect and did not know for sure if Tory would be able to do the chemo and still get full days in at school. This past week will now become a new standard for us to measure her future progress against.
Tory's next chemo cycle(#6) is scheduled to begin on October 11th. She will get labwork, her respritory treatment and meet with Dr. K or Beth Ann on that date. We might also be seeing Dr. Thomas (her neurosurgeon) if it can be arranged. Until then she doesn't have any other mandatory medical appointments scheduled, but we will be making arrangements to pursue her vision options, and get a hearing test done. She is supposed to return to see Dr. Koneko (Neuro Psychologist) in Jan 05. The coordinated treatment center felt her next Neuro Rehab Evaluation wouldn't be necessary until next year at this time.
I have now returned to work and did so on Aug 23rd. This has been somewhat difficult but my employer has and remains very patient as I get readjusted. Teresa has been back at work since late April. As you can see, Tory continues to amaze everyone and we are so very, very, very proud of her. We still keep a very close watch over her even though we are now stepping back a little and further away during each day. Words cannot even begin to describe how proud Teresa and I are of everything Tory has accomplished since her illness was first discovered. As many others have already stated, she is a very amazing, remarkable, strong, determined and courageous little Lady!
We don't have any big plans for the upcoming weekend. Tory will get a chance to rest if she wants. I'm sure she and Teresa might get into town for a little shopping if Tory is up to it. I will be trying to regain control of things around the house and begin outside preparations for fall and winter which will be arriving soon. The leaves on the trees are already starting to change colors and fall off.
Thank you to everyone for your continued thoughts, prayers and support. This has helped us all very, very much. We don't know what we would have done so far without your assistance. Let there be no doubt that it has contributed significantly to our support for Tory and her progress so far. Thank you again.
Love Troy and Family.
Saturday, August 21, 2004 6:55 AM CDT
Good Morning:
Tory had a wonderful, very busy and fun weekend last weekend. One of her girlfriends and classmates from school spent the weekend with us and they stayed very busy catching up on everything that has went on over the summer while they have been apart. They also got plenty of time outside and had lots of fun riding the ATV's. It was great to see Tory having so much fun.
Tory began her next chemo cycle (#4) this past Monday. We travelled to Fargo on Monday for her scheduled appointments. She received her respritory treatment and then had her lab work done and met with Dr. Kobrinsky (Medical Oncologist). Her lab work looked very good. Her platelette count had once again improved considerably. There is only one other category of her blood that remains somewhat lower than normal, however, it is still much better than is usually observed in cancer patients and is not a major concern at the present time. Dr. K was very pleased with Tory's progress and commended her for her efforts. He had received the letter from Dr. Pollock at the Mayo Clinic and was also very pleased with the outcome of her procedures at that location. In his letter, Dr. Pollock called Tory a very remarkable little girl. I don't think there are any medical professionals that have worked with Tory so far that would disagree. She has made a very strong impression on everyone who has met her and/or been involved in her care. Dr. K instructed Tory to keep up the good work and she promised that she would. She made it clear that she was very excited about returning to school and Dr. K encouraged her to do so. We discussed her exposure to various viruses and colds and obtained instructions on how to respond to them. We also discussed the process for Tory's wish with the Make-A-Wish Foundation. Once again Dr. K was so very pleased with Tory's progress and made sure she knew it. It was also determined that we would once again reduce the daily dose of the steroid Tory is taking. This is another big step ahead in her recovery.
Before leaving we also took Tory around the Hospital and Cancer Center to visit many of the specialists and nurses that have helped or worked with her during her recovery. Everyone was excited to see each other and had a good time visiting for a bit. I must say that all of the people we visited were very, very pleased with how far Tory had come since they worked with or saw her last.
After returning home Monday afternoon we got settled in and Tory began her chemo cycle that night. Overall, this was probably the best week Tory has had yet while taking her medicine. Although she was obviously tired from the chemo medicine, she did not have any problems or nausea spells. The anti-nausea medicine she is now taking has made a world of difference and really makes each chemo cycle much more pleasant for Tory. She took her last dose last night and is now completed with Cycle #4. This time around we started her medicines much earlier each day, which allowed her to have a snack around 8:30 or 9:00 pm. she really liked that a lot. Her appetite has not been a problem and she really likes to eat whenever she can.
For the most part Tory spent most of the week resting. I met with Tory's insurance claims case manager on Tuesday at the base and discussed her recent procedures and upcoming needs. I must say that TriCare has made things very easy for us during Tory's illness and remains committed to helping us seek out whatever treatment she may need in the future.
We don't have any big plans for this weekend. Tory will mainly be eating and resting as she prepares to start school this coming Tuesday. Once again, she is very excited about that. We meet with the Make-A-Wish representative on Monday to begin the wish review and approval process. I will be at school with Tory on Tuesday for sure. I need to speak with her new teacher and other faculty members and so forth. Tory will probably begin going to Judy Graves house after school on Wednesday.
Tory will begin by attending full days, however, that will be adjusted accordingly if it appears she is getting too wore out. This will continue to be monitored very closely, since Tory has come so far we don't want to risk letting her get wore down and in turn causing other set backs. Her strenth is still too important to her continued recovery.
Tory's next chemo cylcle is to begin on Monday, Sep 13. She has lots of appointments that day and will also receive her next MRI at that time. We are also in the process of arranging for her to meet with Dr. Thomas (Neuro Surgeon) and Dr. Neslson (Opthomologist) as well in early or mid Sep. She also has her 6 month re-evaluation by the Combined Neurological Assesment Team on Sep 8th. She will continue to be very busy in the days and weeks ahead.
Thank you to everyone for your thoughts, prayers and continued support. It has helped us all so very much. Tory remains very strong, determined and courageous. Your efforts have enabled her to do so.
Love Troy, Teresa and Tory
Friday, August 13, 2004 7:17 AM CDT
Good Morning:
Since my last update, Tory's recovery from her Gamma Knife Surgery and the other tests she underwent has continued without any complications or problems. As of today, she has not experienced any headaches or other identifiable side effects or deficiencies from any of the procedures.
We had a wonderful weekend in St. Paul (Woodbury) and for the first time in many, many, many months felt like we could simply relax for a while. We had a lot of fun visiting and having a cook out on Saturday. Mike (Rene's) brother, did a wonderful job cooking a turkey in the propane turkey cooker. On Sunday, Tory got to fulfill one of her longtime desires. She got to go to the Mall Of America (MOA) for the first time. It was pretty much a gals thing, and I am told all the gals (Teresa, Tory, Rene and Sara) had a wonderful time. They went to the Underground Acquarium and viewed a variety of different aquatic creatures. They also covered two of the four levels in the massive facility. I have seen first hand that they also did some major shopping at a variety of locations that included the "Disney" store. Tory has not quit talking about how wonderful the MOA was and she cannot wait to revisit it again in the future. We had a quiet evening on Sunday night and departed for home on Monday morning around 10:00 a.m. Our trip home was uneventful, except getting lost briefly in Moorhead, MN.
Upon our return to the house, all the pets were excited to see us. Axl looked like he had grown. Kim did a very good job watching things during our absence. This was a great relief. That afternoon we spoke to the Mayo Clinic and they were very excited (and pretty suprised) to hear that Tory was doing so well and had not experienced any problems following her tests and surgery.
On Tuesday, Tory was pretty whipped and she spent most of the day resting. I will also note that since the weather was very unseasonably cold, we also made a fire in the wood burner to warm the house up. This pleased Tory very much and made the house much more comfortable.
That evening we were finally able to speak to the local representative from the "Make A Wish Foundation" who will be handling Tory's wish. A tentative appointment to further discuss this has been scheduled for Monday, Aug 23. All previous attempts to begin the process have been interrupted by Tory's changing condition and treatment needs. Tory is very excited about getting a special wish granted to her. There are still many steps remaining before the process is completed and Tory's specific wish is identified and granted.
On Wednesday, Tory and I went to her school and completed her registration for the upcoming school year. This was a very big moment for all of us. Tory was so very excited about getting ready to begin the 6th grade. We got a chance to visit with Ms. Burke (Principal) as well as Rita (Business Mngr) and Peggy (Administration Mngr). We have began discussing Tory's upcoming needs and been assured that the school will one again do everything they can to accomodate them. We still have a variety of different things to tweak in hopes of allowing Tory to attend full days. This will be a very big step for her in her recovery, however, we intend to watch her very closely to ensure she doesn't get to worn down. We also have to determine how her chemo cycles will effect her ability to attend school. As you can see there are still a variety of issues to work thru and attempt to prepare for. After leaving the school, Tory and I decided to have a little unplanned celebration at the Emerado "Dairy Queen". Tory's registration and preparation's to attend school this year was a very big step for us all and therefore justified a little fun!
On Thursday, Tory and I went over to her day care provider (Judy Graves) home and visited for a couple of hours. Judy had not seen Tory for a couple months and was pleasantly suprised at far she had come since that time. She was also suprised that we were beginning our preparations for her to return to Judy's care sometime in the near future. Judy was very excited and confirmed that Tory would definately be welcome to return to her care whenever we were ready. During our visit, Tory got the chance to get reacquainted with most of the other children that stay with Judy each day. Everyone had a good time. Tory also got to see, pet and feed the Graves horses, which included a 4 month old colt.
On Thursday evening, we went into town to assist one of Teresa's co-workers who was getting her hair cut so she could donate it to the "Locks For Love" program. After we arrived, Jean arrived and informed us that her little neighbor girl was also going to get her hair cut and donate her locks as well. This was a very special event for us all, and we took time to reflect on how important these contributions are to everyone who looses their hair for whatever reason. Tory got to help cut Jeans specially wrapped pony tail off, and all the haircuts (new hair styles) looked wonderful when they were done. Everything was documented with photo's. The haircuts were done at the Great Clips on 32nd Ave So at no charge. We then took Tory to Target and completed most of her school shopping (School Supplies Only). After that Tory was treated to a meal out at her favorite place, the "Panda Buffet". Upon our arrival we had a wonderful meal and visit with some of our long time friends (The Murphy's), that were also dining there. Once we returned home, Tory stayed very busy sorting through her school supplies and organizing them in her back pack. Once again she is so very excited to begin preparing for her return to school.
Tory and I have to go out to the base clinic either today or next Tuesday. We plan on visiting with the health benefits coordinator, possibly Dr. Neselrud (Tory's Pediatric Care Provider) and accomplishing our travel voucher for our trip to Rochester.
Our activities this weekend are still somewhat uncertain. We may have some friends out on Saturday. We are also trying to arrange for one of Tory's girl friends to spend the night. I also have a lot of mowning to do, so I'm pretty sure we will be staying close to home.
We return to Fargo on Monday (Aug 16). Tory has a variety of appointments that day at the Cancer Center and Hospital as we prepare for her to start her next Chemo Cycle (Cycle #4) that evening. She will be taking her chemo medicine next Monday - Friday. As far as we know Tory will not have an MRI this visit. That will be next month when we return for her to prepare for her next chemo cycle. She will probably see Dr. Thomas (Neuro-Surgeon) and Dr. Nelson (Opthamologist) next month as well.
Tory's first day of school is scheduled to begin on Tuesday (Aug 24). We have still not decided when or if she will be able to ride the bus. Doing so would make for a very long day that will already be very demanding and challenging for her.
I think that pretty much catches all of the main highlights up for now. We cannot say enough about how much everyones thoughts, prayers and assistance has helped us! We just don't think we could have made it this far without everyones generosity and support. From the very beginning we were faced with many very difficult decisions and we put Tory's needs ahead of everything else. We apologize for any hardships this might of caused, however, we are confident that this approach has greatly contributed to the success of her recovery thus far. Although we are not certain what "normal" is any longer, we are now beginning the process of restoring as much "normalcy" as possible to our weekly routine. I am hopeful that I will be able to return to work sometime in the near future, although exactly when must still be determined. We still have a varitey of unknowns to prepare for, but for the moment at least feel like a large portion of the weight we have been carrying for the last several months has been greatly diminshed. Once again, we thank you all for your kindness, understanding and support during this difficult time.
Love Troy, Teresa and Tory!
Saturday, August 7, 2004 6:47 AM CDT
Good Morning:
We made our trip to Rochester during the past week as planned and Tory has now completed her very thorough assessment and Gamma Knife Surgery without any problems or complications.
This past Wednesday and Thursday, Tory met with several different cancer and neurology doctors and underwent a very thorough examination or assessment which included a variety of different tests and lengthy MRI's. For the most part these were all in preparation for her Gamma Knife Surgery on Friday. Everyone continued to feel that Tory was a prime candidate for the gamma knife procedure and there was a very good chance it would benefit her significantly.
Tory remained very strong, determined and courageous during all of her examinations and tests, which made things move along very smoothly and much quicker than anticipated by the medical staff.
Tory had her gamma knife surgery as planned on Friday morning. She was sedated and then put to sleep during the procedure that involved many different things. Following the surgery, her recovery was very quick and she was released from the hospital much sooner than was anticipated by her doctors and nurses.
We all spoke to Dr. Pollock following her surgery on Friday and received some very good news. He felt the procedure went very well and he commended Tory on her strength, determination and courage during her treatment and recovery. We were told that during the procedure, Tory received the equivilent of 2/3 rds the overall dose of radiation she had received in her phase 1 treatment over 6 1/2 weeks. The tumor site was covered either 7 or 9 times, and all potential cancer cells were covered thoroughly.
We were then informed that all of the tests that had been conducted earlier in the week, which included collecting spinal fluid, indicated that there was no evidence the cancer had managed to spread anywhere else. This was very important and good news for us. Dr. Pollock felt that Tory's treatment plan so far had been as good as it could possibly be under the circumstances. He was very pleased with how the gamma knife procedure had went, and was very optimistic that Tory was winning her fight.
Although there are never any absolute guarantees, he was again very optimistic that the remaining portion of the tumor had been nuetralized and Tory's condition would continue to improve and there was a very good chance the cancer already had been or was now being defeated. Dr. Pollock's opinion's were based upon many different factor's which were thoroughly explained to all of us in the recovery room.
Let there be no doubt that all of us were very excited about Dr. Pollock's comments and shared a very emotional moment of joy while visiting with him.
Dr. Pollock informed us that the success of the procedure will be measured by what the remaining portion of the tumor does in the future. Future MRI's will be able to determine whether it is shrinking, remaining the same size and so forth. Tory could experince some side effects down the road which is always a possiblity anytime a patient receives radiation treatment. Dr. Pollock felt that the doctors at the Merit Care Hospital and Roger Maris Cancer Center could adequately follow Tory's progress without a need for her to return to the Mayo Clinic anytime soon. He and the other doctors we met with at the Mayo Clinic, informed us that all of Tory's doctors handling her care in Fargo were very very good, and reassured us that we had obtained the best care possible at the present time.
As I might have stated already, Tory rebounded very quickly from the surgery and was released from the hospital much sooner than anticipated. She experinced some minor pain and discomfort around the areas on her head where the headframe was anchored. She received one dose of pain medicine for that but has not asked for any since. She also received an extra dose of steroid following the surgery to counteract any irritation/swelling around the tumor site from the radiation following the surgery.
Since Tory was very "perky" after being released from the hosptial and her nap at the RMH, we decided to depart Rochester and have traveled to Woodbury outside St. Paul, to visit Rene and Sara Emerick. This is where we will spend the weekend. If everything goes well, we will check in with the Mayo Clinic on Monday morning and then plan on returning home to Grand Forks that afternoon.
We are all very relieved that another major step in Tory's treatment and recovery has been completed without any major complications. Due to this we plan on relaxing a little and having a little celebration over the weekend with Rene, Sara and the other members of their family that will be stopping by to visit.
I again want to thank all of you for your continued thoughts, prayers and support. This has helped us more than words can really say during this difficult time. Your efforts have made things much easier for all of us and given us all the strength, determination and courage we need to continue our journey down this new road we have been challenged to travel. Thank you to all of you for everything you have and continue to do to assist us!
Love Troy, Teresa and TORY!
Friday, July 30, 2004 6:47 AM CDT
Good Morning:
During the past week it was discovered that due to an administrative oversight, Dr. Pollock at the Mayo Clinic had not received all the information he needed to thoroughly review Tory's case. As a result, nothing had been done since the initial letter of notification was sent to him in early July and this is why we had not heard anything from the Mayo Clinic regarding Tory's next surgery.
Since this was discovered this week, Dr. Pollock has now received everything he needed and we learned yesterday that he believes Tory would be a good candidate for the Gamma Knife procedure. Because of this a lot has happened in the last 24 hours. I had several phone conversations yesterday with a variety of Doctors and Nurses at the Mayo Clinic and the Merit Care Hospital and Cancer Center. Things are now moving very very fast.
Dr. Thomas was the first to inform me of Dr. Pollock's decision and indicate that he and his team at the Mayo Clinic wanted to do more tests to prepare for the procedure. After our discussion the scheduling process began and we learned the following information during all of our conversations.
We will be leaving for Rochester, MN., on Tuesday morning. We will probably be there 5 or 6 days depending on how things go. Tory is scheduled to undergo the most thorough series of MRI's she has ever had so far. It will involve both non contrasting and contrasting views of her head, cervical, lumbar and thorasic spine. The procedure usually takes about 4 hours if nothing needs to be repeated. Although we had some discussion about breaking this up over two days, it has been decided to complete it all at one time. We all feel Tory can handle it and the Neurology Dept is prepared to work with Tory as needed so that she doesn't get figity or restless. I will also be with her during the entire procedure. Once the results are completed we will then meet with Dr. Pollock to discuss the procedure and review the results. Following that we will later meet and visit with Dr. Foote (Radiation Oncologist) to do the same. Once all the preliminaries have been completed, Tory will undergo the procedure. Once the surgery is completed, she will remain under observation for a short period and be released that afternoon or evening as deemed appropriate. It is likely that we will stay in Rochester an extra day or so before beginning our return home to Grand Forks. That will depend on how Tory feels following the weeks activities.
Our tentative schedule for the moment is as follows.
Tuesday (Aug 3): Depart for Rochester, locate Mayo Clinic and obtain lodging. We do not know where we will be staying yet, but hope we will be able to stay at the Ronald McDonald House if they have space available.
Wednesday (Aug 4): Go to Methodist Hospital (Eisenberg Bldg) at 7:00 a.m., check in and so forth. Proceed to Charlton Bldg and prepare for Tory's MRI. It is scheduled to begin at 7:45 a.m. It will last at least 4 hours if everthing goes well. If Tory is given some breaks it will probably take at least 5 hours. After the MRI is completed we will see Dr. Pollock that afternoon at 2:30 p.m. in the Gonda Bldg. Once that is done, we will return to lodging and find something to eat. I'm sure Tory will be very hungry.
Thursday (Aug 5): We meet with Dr. Foote (Radiation Onclogist) in the afternoon either at 2:00 or 2:30 p.m. This is still being worked out and the location of his office is not yet known. That is our only appointment that day. We will then make sure Tory has plenty to eat that afternoon and evening. As far as we know right now, she cannot have anything to eat after midnight. We will also ensure that Tory gets as much rest as possible once we return to lodging.
Friday (Aug 6): Report to the St. Mary's Hospital at 5:30 a.m. and get Tory checked in. She will then undergo her gamma knife surgical procedure. The exact time line of events that day and all the specifics about what is involved are not yet clear. We will learn all of this once we meet with Dr. Pollock and Dr. Foote. Depending on when everything gets started and so forth, Tory might be ready to be discharged that afternoon or evening. That deceision will be made following the procedure while she is being observed. We intend to return to lodging whenever Tory is released. We will remain with her at all times while she is at the hospital.
Saturday (Aug 7): We will allow Tory to get some extra rest and begin to decide when we will return to Grand Forks.
Teresa and I will have our cell phones with us, but we will not have the on while in any of the hospital bldg's. At the moment we don't have any idea how we can be reached or exactly where we will be staying. I don't know if we will have access to a computer and therefore cannot say if I will be able to provide any updates while we are away. That all remains to be seen.
It has become very unlikely that Tory will be able to attend Kamp Kace next week. It was scheduled to begin on Sunday (Aug 8) and go through Friday (Aug 13). She understands that her surgical procedure is the number one priority and she would prefer to get it done as soon as possible. We all feel the surgery is the most important thing at the present time, and it remains our belief that she will always be able to attend the camp next year.
We learned yesterday that all of Tory's upcoming appointments at the Maris Cancer Center and Merit Care Hospital this coming Monday have been rescheduled for Monday (Aug 16). Her next chemo maintenance cycle (#4) that was supposed to begin on Monday (Aug 9) has also been delayed until Aug 16. This will allow her to pretty much rest up for a little over a week before her next chemo cycle begins.
Due to the recent developments, our orginal plans for this weekend have been cancelled and we will be staying home so we can get ready for our trip to Rochester next week. It sounds like Tory's friend Jazzman and her mother will be here visiting this weekend, so that should keep Tory busy. We intend to try and have a little fun while still getting all of our pre-trip preparations completed, and ensuring that Tory gets adequate rest.
I don't really anticipate our schedule for next week changing, and we will try to provide some updates when time allows. Once again we are uncertain what resources we might have available to provide updates.
We have lots of things to do today so I better get going. Once again I would like to thank everyone for all of your generosity during our time of extra need. Your thoughts, prayers and support have been very much appreciated, and kept us all focused on what has needed to be done to aide Tory with her continuing treatment and recovery. Please continue to think of Tory when you can and remember that she as well as Teresa and I gain much strength from your thoughts and prayers.
Love Troy and Family
Wednesday, July 21, 2004 2:59 AM CDT
Good Morning:
Tory completed taking her last cycle of chemo medicine last Friday night. Overall, the entire five days were a very pleasant experience. It is unbelievable what a difference the new anti-nausea medicine has made. She did not get sick once and had very restful nights. On Friday night we even allowed her to try another first. Since she ate her last meal around 5:00 p.m., she took her chemo medicine at 8:30 and was still wide awake. She remained up watching TV and at 9:30 she sucessfully ate some snacks before going to bed without causing any problems. As I said this was a first and something we never would have considered previously. Tory was very excited that this went well, and was happy to know she could eat something later in the evening after taking her medicine if she wished to do so. I cannot say enough about how much the new anti-nausea medicine has changed her monthly chemo experience.
Tory's appetite remains very good and has finally started to level out a bit. During her last checkup she had only gained about 3 pounds during the last month.
Over the last week we had the opportunity to visit with many of our friends we hadn't seen in some time. Last Wednesday evening, Kayle, Jensen and Carson, as well as Linda Olson came out to visit. We all had a very nice time sitting outside around the camp fire. Carson kept himself entertained in the yard and with the puppy, while everyone else visited. On Thursday afternoon, we stopped out at the Heidecker's in Arvilla and visited with John and Thieda. Axl went with us and he got to play with their little dog "Biscut". On Friday afternoon, Tory and I went to the Berthold's house in Arvilla and helped them prepare the four pigs they were cooking for the annual Larimore Days Pig Roast sponsored by the Volunteer Fire Dept. Needless to say, Tory got lots of visiting in, Axl got to chew on plenty of tasty bones, and we all had plenty of pork sandwiches before returning home.
After some discussion, Tory decided she would pass on the Grand Forks Fair this year. This was a hard decision for her since she really did want to ride all the rides, although she knew that would not be possible. She decided if she couldn't ride any of the rides, it was probably better not to go at all. She instead asked to go out to the Larmiore Days celebration and we did. We ended up hanging out at what is referred to as the "Mud Volleyball" competion. This was very interesting and there was a very big crowd of spectators. We ran into many friends and acquaintances there and spent the majority of the afternoon sitting out in our lawn chairs visiting with everyone. We all had a very good and relaxing time. Teresa and Tory went to base on Sunday and did some shopping. They really hate that. That evening our planned outside activities and meal were interrupted by a very nasty Thunder Storm that included not only lightening and thunder, but high winds, heavy rain and fairly large hail as well. This all came about so fast that it actually trapped us outside in the camper at first. I was eventually able to get Tory and Teresa into the Shop where we took shelter until things calmed down enough to get Tory over into the house. While listening to the radio we learned that we were in a Tornado Warning at the time. When everything was done, there had been several Tornado's sighted in the surrounding area's.
On Monday we returned to Fargo and Tory had her respritory treatment. We also had Beth Ann at the Cancer Center check Tory's ear, since she informed Teresa and I on Sunday that it had been sore and bothering her since Wednesday. Tory explained that it was at it's worst on Thursday and Friday and was slowly getting better. Beth Ann determined that the canal in her left ear had a scratch or sore in it and was inflamed. It was also determined that the ear wax in both ears appeared very hard, which we learned can be an after effect of the radiation and chemo. We obtained some antibiotics for her ear and were also directed to apply mineral oil into her ear canals to help soften/loosen the ear wax build up. Beth Ann was pretty confident these efforts would correct this situation.
Beth Ann stated that they still had not heard any specifics regarding Tory's next surgery. It was her understanding that all the various Doctors were still working on the arrangements and the referral coordination process was underway with our health care providers. She added that they are still planning on Tory attending Kamp Kace (Aug 8-15), until it is deemed otherwise. She also stated that they have been working on adjusting Tory's chemo schedule that week (possibly starting it early), to allow Tory to participate in as many of the camp activities as possible.
We stopped at the Ronald McDonald House before leaving Fargo and had a long visit with Susan and Corrine. We got some contact info for the RMH in Rochester, MN. We were also informed that they are working on obtaining copies of the various news casts that Tory was in. We also learned that the little girl in the RMH commercial with Tory is Erica Schmidt. We have heard a lot about Erica since Tory's was diagnosed with her illness but have yet to meet her and her family. She also has cancer, and she and her family live in the Fargo area.
Tory spent yesterday resting and then getting to visit with our neighbor Maureen. I finally got one of the air conditioners installed and it helped make the inside of the house much more comfortable during the recent hot and muggy weather.
Overall, Tory is contuning to make some form of visible progress in recovery each day and/or week. We have been allowing her to do more unsupported walking and she pretty much moves about the house and yard unassisted. She is still not allowed to ascend or descend the main stairs without assistance and/or close supervision. Her vision is continuing to slowly improve and she is doing more and more without the use of her patch. She still has double vision, however, she says the distance between the two objects is continuing to get closer. Her left side is still weaker then her right but visible progress is continuing to be seen. Her speech is getting clearer and easier to understand, although her rate of speech is still rather slow.
We have now began reducing her steroid as instructed. This should help stabilize her appetite in the future. It should also begin to reduce some of the swelling or fluid retention she has in her face, neck, and shoulders. The doctors believe that her recovery so far indicates that she should not have any problems without the daily steroid dose. It is being discontinued slowly and will be diminished gradually over the next couple weeks. Tory is again excited that another medication or pill is soon going to be gone from her daily regiment.
Tory has been a lot of fun the last couple weeks. She is so amazing and always seems to be happy even when she has every right to be upset. She remains very strong, determined and courageous. Except for treating her present ear problem, we don't have any other medical appointments in the near future until we hear more about her next surgery in Rochester. As soon as we get more information about this we will pass it on.
Thank you to everyone for your continued thought, prayers and support. Your assitance is greatly appreciated and has helped us all in many ways. Please continue to think of Tory when you can. Your thoughts and prayers give her much strength.
Love Troy and Family
Thursday, July 15, 2004 6:28 AM CDT
Good Morning:
To begin with, Tory continues to be very strong, determined and courageous as she continues her recovery from her many surgeries and endures her ongoing cancer treatments. Her overall health and fitness are still improving on a daily and/or weekly basis. She has faced our present dilema head on and has not waivered in our resolve to seek out the best and most aggressive treatment possible and overcome this interruption once and for all. Teresa and I continue to be so very proud of Tory for all of her efforts and hard work so far. Thank you to everyone who has helped us along the way so that we could get to where we are today. We all realize we still have a long journey ahead, however, with your thoughts, prayers and assitance we are all confident we can press on and make it to the end with a favorable outcome.
Tory had a good weekend and we all had a good time playing with our new puppy "AXL". He is quite a little guy, and is starting to adjust and become comfortable in his new home. Tory and I took him to the Vet on this past Tuesday for his first checkup and he already weighs 17 1/2 pounds.
As expected, we returned to Fargo on Monday. We had a busy day and didn't have any real suprises. Tory's MRI went much quicker than usual thanks in part to a previously placed IV port that prevented the MRI techs from having to search for a vein when it was time for them to inject the contrasting solution. I think Tory and I were in and out in 30 mintues or a little less. It usually takes us closer to an hour.
We were informed that afternoon that the results from the MRI were unchanged. This means that when compared to previous MRI's the size of the remaining portion of the tumor has not increased or decreased. This is actually pretty good news. For the time being it is stable. It is still unclear what effect if any the first phase radiation treatments had or will have on it.
Tory met with Dr. Kanien (Indiocrinologist) and received a full exam. She seemed to like him as they got to know each other better during their visit. For the moment, he felt that Tory is doing very good and there are no immediate concerns. In other words, her growth and development is on track for the time being. He will continue to monitor her monthly lab results, and unless something develops in the mean time Tory's next appointment with him will be in 6 months. Dr. Kanien also recommended that we could begin decreasing the amount of the Steroid Tory is presently taking in the near future. I think we will begin this after Tory completes her present chemo maintenance cycle.
While seeing Beth Ann at the Cancer Center in the afternoon, we learned that all of Tory's blood work continued to look very, very good. Many of her counts have returned to at least normal levels. We were again told that Tory's blood counts due not represent the typical patients counts at this point in her treatment and recovery. All along her levels have been strong considering everything she has experienced so far. Once again this is also good news. Tory got another thorough exam from Beth Ann and she was very pleased with the progress Tory has made since they saw each other last. As always Tory was applauded for her efforts and encouraged to keep up the good work. Tory finished their visit by walking for Beth Ann and showing her an example of a funny walk she had seen over the weekend.
During our conversation with Beth Ann, we learned that Dr. Thomas and his staff were in the process of getting the required referrals and so forth accomplished in preparation for Tory's next surgery. She wasn't exactly sure what had been or remained to be done. She was hopeful that we would learn more this week. She really couldn't say what we should expect as far as pre-op appointments and so forth. She was, however, certain that many specialists were involved in reviewing Tory's case and making the necessary preparations for her next surgery.
I should also mention that during our breaks between appointments, we visited Easy Street and the Childrens Hospital floor and got to speak to many of the various therapists, nurses and Dr. Storm who all have assisted with Tory's recovery. They were all very happy to see her and enjoyed seeing how much progress she has made. Dr. Storm who was in charge of Tory's care while she was in the Pediatric ICU was especially pleased to see how far she had come. We all reminded him how grateful we were for all his efforts during Tory's stay in the PICU.
Prior to departing, Tory received the IV dose of the new anti-nausea medicine and we picked up all of her required medications for the next chemo cycle and so on.
Tory stared her next chemo maintenance cycle (Cycle #3) on Monday evening. She is again taking the new anti nausea medicine (IV and Pills) in conjunction with the chemo medicine. As a result, Tory has had restful and uneventful evenings so far. Words can't say what a relief it has been to see her sleep through the nights without getting sick. Teresa and I are still restless, but Tory only awakes for trips to the bathroom. We are now past the midway point and only have two more nights of taking the chemo drug left in this cycle. We will again have some sort of little celebration on Saturday, once Tory is completed. She is already excited about being able to eat past 6:00 p.m. and stay up later than 9:00 p.m.
We are still unable to provide any real specifics regarding Tory's next surgery or if we will have to make more than one trip to and from Rochester, MN. Once more information becomes available, I will pass it on. We will be returning to Fargo this coming Monday, since it is once again time for Tory to receive her monthly respritory treatment. That afternoon we will be stopping at the Ronald McDonald House to visit and get more information about he RMH in Rochester.
We are not yet certain what we will be doing over the weekend. The Grand Forks County Fair starts today and Tory would really like to go if we can. She would really like to ride on the rides, but has finally accepted that will not be possible this year. We have set that as a goal for next year. Larimore Days (annual town celebration) is also going on, so we might go that way and spend some time seeing and visiting our many friends out that way.
I think that's pretty much it for now. Thanks to everyone for everything you have done to help. It sure means a lot to all of us and has got us to where we are at the present time. Please continue to think of Tory when you can. Your thoughts and prayers have and will continue to give her much strength.
Love Troy and Family
Wednesday, July 7, 2004 8:33 AM CDT
Good Morning:
Well, Tory had a very enjoyable 4th of July weekend even though the weather wasn't exactly great! The highlights of the weekend were playing with her puppy (Axle) and watching fireworks and eating lots of good food at the neighbor's house Sunday evening.
We were informed yesterday that Dr. Thomas (Neuro Surgeon) has finished his research regarding Tory's next surgery. We were informed that Dr. Rock in Detroit did not recommend that a standard brain surgical procedure be used to remove the remaining portion of tumor. Dr. Rock has recommended that Tory should instead receive what is referred to as Stereotactic Radiosurgery (AKA: Gamma Knife Surgery). This does not require any type of incision and so forth. It uses a special single dose of radiation to bombard the remaining tumor. This is a highly specialized procedure and the Merit Care Hospital in Fargo does not have the facilities to do it. As a result, Dr. Thomas is in the process of making arrangements with Dr. Bruce Pollock at the Mayo Clinic in Rochester, MN., to have the surgery done there. Although a specific date has not yet been set, we anticipate that it will occur as soon as possible and probably sometime in the next couple weeks.
From what I understand the procedure uses a special headframe and 201 individual beams of radiation to bombard the tumor. If everything goes well, all the prepatory steps and the surgical procedure are usually done in a single day. In most cases the patient is admitted in the morning and released that evening or the next day. This procedure apparently has the best chance of knocking the tumor out once and for all. The Mayo Clinic has been performing this procededure since about 1990 and worked with about 2600 patients so far. As Dr. Thomas expected, Tory was excited to hear she wouldn't have to undergo a normal surgical procedure again at the present time.
There are still many things to get coordinated and scheduled for this procedure. We will be busy working on all these things in the upcoming days and/or weeks. It is not known when we will be departing for the Mayo Clinic or how long we will be there, or if there will be any preliminary visits required so that Tory can be further evaluated by any of the specialists involved in the surgery.
Unless we are informed otherwise, we will be returning to Fargo on this coming Monday. At the moment, Tory is scheduled to have her lab work done, have another MRI, and meet with Dr. Kanien and Dr. Kobrinsky. We will get her next round of chemo medicine before we leave and she is scheduled to begin Cycle #3 of the phase 2 maintenance cycle that evening. Since we have yet to hear from Dr. Kobrinsky, we don't know exactly what his thoughts are about the revised surgical procedure.
I will try to provide more information about the next surgical procedure as it becomes known.
Thanks again to everyone who has thought about Tory since the discovery of her illness. We are very fortunate to have so many kind people thinking of us. Please continue to think of Tory when you can. We all gain much strength from you thoughts and prayers, and it helps make each day a little easier.
Love Troy and Family
Saturday, July 3, 2004 8:22 AM CDT
Good Morning:
Happy 4th of July to everyone. Hope everyone has a safe and enjoyable Independence Day! We will be near the house, spending time with our neighbors and pets. We will probably watch the fireworks at our neighbors house tomorrow night.
Tory continues to make visible progress and has been doing very good. We finished summer school this week, and she won't have to go back to school until this fall when it resumes. I believe that is about August 20th.
Tory's medical appointment this last Thursday was rescheduled since the doctor was going to be out of town. As a result all of Tory's next appointments will be on Monday, July 12th. We know for sure she will see Dr. Kobrinsky, have lab work, get another MRI and see Dr. Kanien that day. That is the day she is scheduled to begin her next chemo maintenance cycle. Although we were led to believe that is when she would most likely be admitted and have her next surgery, we have still not heard anything for sure in that regards. We hope a firm decision and update will be provided to us early this coming week.
Tory seemed to be a little more fatigued than normal this past week and resumed taking fairly long naps in the afternoon after we got back from school. It is unknown exactly why this occurred. It could have been the increased heat, her increased stimulation and activity, or a variety of things. She hasn't been complaining of any symptoms that might indicate her overall condition has changed. She continues to be a very happy and cheerful little lady. She had some good visits on the phone with various friends and family members.
As I mentioned previously, Tory was very interested in getting a small little dog of her own that could be her constant companion and travel with us from place to place. Although Teresa and I felt we should wait, we were faced with an opportunity this past Thursday to obtain what we were told was a pure bread Beagle puppy at no expense. After much discussion we agreed to take the little guy. When he was delivered and removed from the pet carrier, we discovered that he was actually a Basset Hound. Boy was I suprised, however, by that time there was really no changing our minds. Tory fell in love with him right away, and "Axle" is now a member of our family. He and Tory have already became quite attached and she really tries her best to take responsibility for the majority of his care, although some of his needs are beyond her abilities at the present time. His is 11 weeks old and was bred in South Dakota. He is a very cute and energetic little guy.
Well, there really isn't a whole lot more for the moment. We will keep everyone informed as soon as we hear more about Tory's future treatment and so forth.
Thanks again to all of you for your support, thoughts and prayers. This continues to give us all much strength. Please continue to think of Tory when you can.
Love Troy and Family
Saturday, June 26, 2004 5:20 AM CDT
Good Morning:
Well, another week or more has passed and Tory continues to make visible progress with the surgical aspects of her recovery and stay very busy with all of our daily activities.
To begin with the last chemo cycle went far better than expected. The new nausea medicine that Tory was provided was exceptional. She made it through all five days of the chemo cycle without experiencing any nausea what so ever. This was a huge relief to us all and Tory was able to get some quality rest during each night that she took the medicine. As always the medicine still wore her out, but not having to experince the nausea episodes made her feel much more comfortable. After the chemo cycle was over last Saturday, Tory was ready to have a little fun and celebrate. As a result, some of our friends and neighbors came over that evening and we barbecued hotdogs, hamburgers and brats and sat around the campfire and had a little fun. Tory and the other kids also roasted marshmellows over the fire and really enjoyed laughing at each other when one would get a little to done. Everyone, whether young or old had a good time.
On Monday we returned to Fargo and Tory received her monthly respritory treatment. This was pretty much uneventful. We also spent a little time at the cancer center visiting with some of the staff. We spoke to Dr. Kobrinsky (Medical Oncologist) briefly to see if any decisions had been made regarding Tory's next surgery. We learned that Dr. Thomas (Neuro Surgeon) is still in the process of reviewing Tory's recent MRI's with other medical experts, and therefore it is still undertermined exactly when the surgery will occur. After our return from Fargo we had a wonderful lunch at the Royal Forks and spent some time looking at all the puppies and kittens in the Pet Store. Tory is convinced that she would really like to have a new pet. She feels that it would be very good for her to have a small dog that could be her full time companion inside the house, and that could also travel with us from place to place. Although she can be very convincing, we have not agreed to this for the time being.
Tory attended school on Tuesday and then she and I departed for Fargo as planned to assist the Ronald McDonald House with a variety of fund raising activities and media events. We spent about three hours at the RMH after arriving in Fargo and helped the staff with a variety of things, as well as reviewing our schedule of events for the upcoming days. Tory had much fun visiting with Koreen, Susan and Melissa. She also found some girl scout cookies (Carmel Delites) and had a good time eating them up!
After that we drove to the Travel Lodge Motel in Moorhead Minnesota where we were scheduled to stay. The Travel Lodge provided us a room for the two nights at no charge and it was very nice. We learned that they are a very big corporate sponsor for the RMH Charaties nationwide. As we checked in we were told our room was on the third floor and I was a little concerned about that, but the clerk informed me there was an elevator and it was the only room like that in the entire building. I agreed to give it a try and when we got to it we new why they wanted us to have it. The room was decorated in the Sleepy Bear theme (Travel Lodge Mascot). It was very spacious and nearly everything inside had sleepy bears on it. Tory was very pleased! She couldn't believe that even the shower curtain had the sleepy bears on it. We later learned that nearly every Travel Lodge Motel has a similar room, and each time the room is rented a portion of the proceeds are donated to the RMH charities. Tory was pretty whipped and it was agreed that she just wanted to hang out in the room for the night and eat pizza, so we did. We were joined later that evening by Jazzman, who is one of Tory's girlfriends from Fargo. Jazzman would spend the next couple of days with us and she and Tory had a lot of fun during the day and at night when we returned to the room.
On Wednesday morning we had a wonderful breakfast, visited with members of the staff (Kay and John) and then went to the Moorhead Golf Course where the golf tournament was being held. Upon our arrival, we were pretty much treated as roalty. I felt a little uncomfortable, however, Tory ate it up. We were given corsages to wear and so forth. Tory got to meet the big Sleepy Bear Mascot and got her picture with him, just before the tournament started. The start was delayed briefly due to a thunderstorm that moved through the area. Prior to all the golfers leaving for their assigned tee's, Tory and I were formally introduced to all the participants and she recieved a big round of applause. After things got going, we had a wonderful lunch with the RMH and tournament staff. We then got into our assigned golf cart and traveled around the course a little to say hello. During some of our travels, Tory was allowed to drive the golf cart and she enjoyed that very very much. I will admit that Jazzman and I were terrified. We eventually made it to hole number five, where we hung out and basically let everyone come to us. We were also able to visit with Katie who is one of the golf instructors at the course. We also learned that Katie is in the process of obtaining her nursing degree and had worked at the Merit Care Pediatrics ICU and Main Floor, during about the same time Tory first arrived in February.
The wind finally gave us all a chill and Tory started to get wore out. We returned to the club house and Tory and Jazzman took a good little nap in the backseat of the car. It was much warmer in there. They slept for almost two hours and then I woke them up to prepare for the banquet. We sat at one of the two head tables with the RMH Staff, and we had a very nice visit with Gail (Local RMH Executive Director) before everything began. Since Tory was rested up, she was full of energy and shared all of her thoughts with anyone that wanted to visit. We had a wonderful meal, that included Chicken, mixed vegetables, mashed potatoes and green salad. As we have come to expect, Tory was an eating machine.
Following the meal, the program began. Tory was overwhelmed by how many people were in attendance and therefore told me she declined to speak. I shared our experience and what an important role the RMH played in helping us and Tory's recovery following her release from the Hospital. Tory then assisted the tournament director with the presentation of many different team and individual awards, as well as all of the door prize drawings. She had a very good time and did a very good job.
When things were done we visited with different participants and then returned to our room at about 8:30 p.m. It was then time for a swim. The pool was very nice and Tory and Jazzman had a good time. When we got back to the room, we got some more pizza and then relaxed for the night. Tory and Jazzman also had some pretty serious games of Go Fish before finally falling asleep.
On Thursday our morning was busy with getting ready, eating breakfast, visiting with Kay, loading the car, checking out and so forth. We arrived at the new RMH on 18th Ave South, just west of the Merit Care / Dakota Clinic location on University Ave., at about 9:45 a.m. We met with Susan, and a short time later a variety of people including many TV new crews began to show up.
The press conference regarding the new RMH began at about 10:30. The podium was filled with microphones and the room was filled with news cameras. Gail made her opening remarks and introductions and then answered questions. After that a representative from Dakota Clinic answered questions.
One of the news people then unexpectedly asked about speaking to us, and before I could react Tory was headed for the podium (the original plan was that we would speak to the news teams following the ceremony). Tory then did a very very very good job of answering questions and providing her own personal thoughts about how important the RMH was to her during our time of need. I then provided some additional comments and the ceremony ended. Following the formal ceremony, Tory and I then spent another 30 or 40 minutes speaking to the reporter from WDAY (GF WDAZ) about our experience at the RMH and Tory's illness. We were also joined by Gail and some footage was taken of all of us together touring the new building.
Following the event, we were asked to join the RMH staff for lunch before dropping Jazzman off and departing Fargo for home. I really didn't think much of the request and we accepted. I later learned I was being set up I guess you could say. Paridiso Mexican Restraunt was recommended and Tory thought that was great. After we arrived I realized, that there is a big celebration for birthday guests and Tory with the help of Gail and Koreen had made it a point to inform everyone that it was my birthday. Needless to say, we had a wonderful lunch on the outside patio and I got the full birthday treatment. This included having to wear the big Mexican Sombrero while everyone outside sang happy birthday to me. Tory enjoyed this so very much and was full of smiles and laughs. We got our picture taken while I was wearing the big hat and had lots and lots of laughs.
Following lunch we all had a long fairwell that included many hugs. Gail and Koreen felt that we had done a very good job and were very sad to see us leave. Tory and I were also sad to leave them. They have become a big part of our family. We then dropped Jazzman off and returned to Grand Forks.
Tory and I have agreed that the drive between GF and Fargo is now pretty boring. Tory read her book in the backseat while I drove. After we returned home we were anxious to see MOM/Teresa. After she got home we visited and then went back to town and attended her company picnic. Wouldn't you know that as we arrived it began to rain and continued to do so for the remainder of the evening. We had a good time eating and visiting and then got home, only to learn our next door neighbor Maureen had prepared a special birthday meal for us and Magoo's nephew Everett whose birthday was the following day. As a result we went over and had some wonderful shish-ka-bobs, cake and ice cream. When we finally got back to the house we were all whipped and it didn't take long for everyone to be asleep following the local TV news.
Tory spent most of the day Friday resting. It was apparent that she was pretty wore out from the weeks busy schedule. We intend to just relax over the weekend. Although I had really hoped to try and fulfill one of Tory's long time wishes to attend the big Sam McQuade Softball Tournament in Bismarck this weekend, it was clear this just wasn't the right time to do so. We just can't afford to have Tory get too run down at the present time. We will continue to belive that there will always be next year to do that.
Tory will finish summer school up this coming week. It is hard to believe that five weeks have already passed since it began. She will not be able to attend the last day on Thursday, since we have to return to Fargo that day so she can be seen by an Indocrinologist (Hormone Specialist). This is mainly a precautionary measure at the present time, since there is a chance that some of the long term effects of the radiation treatment could effect her growth and development. As of this time, she has not displayed any signs that it did but this gives her a chance to meet Dr. Kenien and become acquainted in the event he becomes involved in her care at a later date.
Well, once again I have shared some of the highlights of Tory's recent activities. I hope this continues to help everyone follow Tory's recovery and what is anticipated in the near future. She continues to be so strong, determined and courageous. She is such a wonderful, beautiful and special little lady. We love her so very, very, very much. We would again like to thank everyone for your continued thoughts, prayers and generosity. All of your assistance has helped us more than words can really say. Thank you all for everything you have and continue to do to assist us. Please continue to think of and/or pray for Tory when you can. We all can feel this and it gives us all the strength and courage we need to face each new day.
Love Troy and Family
Tuesday, June 15, 2004 10:57 PM CDT
Good Evening:
Well, another week and a half has passed and once again there have been many developments in Tory's recovery and future treatment. As we have all come to expect, she continues to remain very strong, very determined and very courageous.
To begin with I must say that we attended the Relay for Life event as planned and it was rather overwhelming. It made all of us think about so many different things and how much cancer affects so many people not only all around us but everywhere. It was a very special event and gave us all the hope and encouragement that cancer can be overcome. Tory participated in the Survior's Ceremony and was one of about 223 survivors in attendence who were identified by name. This years theme was "HOPE" and we left with a lot of it. We stayed until shortly after all the thousands of luminaries were lit around 10:00 pm. They were beautiful and we could not believe how many of them there were. We also spent a considerable amount of time with the Wells Family and all of their Relay For Life teammates. This was very good for all of us, and Brittany and Tory got the chance to visit with each other as well.
Tory completed another week of summer school last week without any problems. She loves it and appears to be having a lot of fun. She will be starting week 3 this week and is again eager to do so.
Since Tory's body continued to be sore on Tuesday, we did not attend water aerobics until Wednesday. Once again Tory participated for the entire hour, although we modified her activities some what so that she wouldn't get quite as wore out. We have determined that for the time being we will probably only attend the aerobics class once a week, and try to supplement that with a regular swim at least once a week. We both can really feel the effects of the water aerobics work out and there is no question that it does what it is designed to.
Tory's new rehab (therapy schedule) is still in the works. We have experienced some difficulties with the new health insurance claims coordinator, and there is still some more referrals and so forth that need to be obtained before any additional therapy sessions are authorized. We will be continuing to work on these arrangements when time allows.
Overall, Tory had another great week last week and through the weekend. She continues to make some form of visible progress in her recovery as each day passes. We were finally able to get all of the correct insect repellents and sunscreens (Deet Free), so that we could begin to try and spend a little more time outside. So far they seem to be working without causing any irritation or problems. These were obtained from AVON, who has developed a DEET free line of these products.
Last Thursday we attended the Upper Red River Valley Claims (URRVC) Associations picnic at the new Lincoln Park in Grand Forks. Although we were only there for a couple hours we had a wonderful time and Tory got the chance to visit with several people. This also allowed her to meet some of the people that had been sending her notes on her web site. She had fun visiting with everyone and got a lot to eat. She really enjoyed the Walleye that was being served. We then stopped by the Softball Fields for a short time and visited with the softball gang. Once again Tory got to visit with a variety of people and really enjoyed being able to see everyone. As you can see, she really enjoys getting out and visiting.
On Friday evening we went to our neighbor's and had a wonderful barbecue. Tory got the chance to reacquaint her self with little Alex (female) and James. They had fun watching movies while the adults got to catch up on a variety of things.
On Saturday afternoon we returned to Grand Forks and attended a retirement barbeque for one of our friends that is retiring from the Air Force. This gave us a chance to see and visit with a variety of other friends and acquaintances that we had not seen in quite some time. Once again we all had a very good time and were able to eat lots of good food. This was another very successful outing and we were all pretty whipped when we got home.
Sunday was kind of a wierd day. I think this is because we were all thinking about Mondays trip back to Fargo to see the doctors, Tory's MRI and lab tests, and Tory beginning her next phase of chemo that evening. We were all restless and so forth. We really didn't do anything specific. The gals rested and I did a few things outside before the afternoon rain showers moved into the area. I don't think anyone slept well at all that night and everyone was up and ready to head to Fargo at 7:15 on Monday.
We arrived at the Roger Maris Cancer Center at about 8:45 or so and had a short visit with Justin (one of Tory's radiation specialists) and then went onto the hospital for Tory's MRI. I accompanied Tory during the MRI. It took about an hour and was again done with the injection of contrasting material. We then returned to the cancer center and Tory's lab work was collected. We then had a break so we went returned to the hospital and visited with many of Tory's original therapist's on Easy Street. Everyone was very happy to see and visit with Tory. They were also very pleased with the progress she had continued to make since her release from their care. We then had a relaxing lunch in the cafeteria and then returned to see Dr. Kobrinsky (Medical Oncologist). All of Tory's vital signs were once again very good, and we learned that she now weighed 124 lbs. This meant that she had now gained about 20 lbs since she her return home on April 16th. This was very good news. We had a very good visit with Dr. K and he was very pleased with Tory's continued progress. We were informed that all of her lab work (blood counts and so forth) were very good. In fact, they were the best they had been yet, even though she had already completed one of the maintenance cycles of Phase Two. This was also very good news. There were no immediate concerns and it was determined that her next maintenance cycle would continue as planned. Dr. K did recommend that Tory try a different medicine to help her with the nausea during the days she took the chemo medicine. This is actually two medicines that work together to eliminate the nausea caused by the Temador. The first is administered by IV and the second is taken orally for the first three days the chemo medicine is being taken. Dr. K wasn't able to obtain the results of Tory's MRI before we left to meet with Dr. Thomas (Neuro-Surgeon) at his office away from the hospital and cancer center complex.
We met with Dr. Thomas at about 2:00 as scheduled. He had a short visit with Tory and was very pleased with the surgical aspects of her recovery so far. He then began to discuss the MRI results with us and came right out and informed us that he felt Tory should have another surgery to remove the remaining portion of the tumor he couldn't get to during the last surgery. Although we always new this was a possiblity, I don't think any of us were ready to hear it would be necessary. I think at that point we all went into a mild state of shock. I know that Tory didn't want to hear it and she got very quiet. Dr. Thomas then offered a full explanation of the MRI findings and why he felt it was necessary or strongly recommended. Teresa and I viewed the MRI results on the computer and could see the remaining portion of the tumor and so forth. To begin with it was larger than I originally believed. We were originally informed the portion that was inaccessible during the last surgery was the size of the eraser on a pencil. What I saw in the MRI images was much larger. I guess it is about 2 cm wide, 2 1/2 cm in length and an unknown depth. Dr. Thomas explained that there is some indication that the tumor was affected by the radiation, however, it is not absolutely clear that it was completely killed by it. From what he can see the outer edge of it appears as though it might have survived the efforts to kill it so far. Due to this, it is his belief that surgery sometime in the near future is the only way to ensure that it is removed in its entirety before it can potentialy resume its growth. Dr. Thomas felt that the surgery should be sometime in the next month. He also felt he would like to contact a couple of his colleagues in Detroit, MI., that specialize in this exact type of tumor to get their opinions regarding the MRI results. We agreed this would be a good idea, and agreed to speak further about the surgery in the near future. I will mention that the next surgery will not be in the cerebellum again. This one would enter above Tory's right ear and be in a different part of her brain. This will still be a very challenging and involved procedure, but will not be quite as dangerous as her last surgery around her brain stem. When we left Dr. Thomas' office, Tory was very quiet. It was evident that we were all bothered by what we had learned. It was also evident that all of our plans for the upcoming weeks and Tory's short term recovery and so forth had just changed again.
We returned to the Cancer Center and Tory was administered the nausea medicine through the IV. While that was being done, Teresa and I had a long talk with Dr. K. As of that time, he had not yet been able to speak to Dr. Thomas. After considerable discussion, it was decided that he would be speaking to Dr. Thomas as soon as possible and we would wait to see what his colleagues in Detroit had to say. In the mean time, Tory would continue with the second maintenance cycle and begin her recovery after all the chemo medicine was taken. Since Tory's system has rebounded very well between each cycle, we agreed the surgery should occurr at the end of the rest period when she appears to be at her strongest. Although there are many things left to figure out, it appears that Tory's next surgery will occur on or about July 14th.
We then departed the Cancer Center and Tory began to talk a little about what was discussed but wasn't sold on what had been recommended.
We then stopped at the Ronald McDonald House as planned and had a very good visit with the staff. Everyone was very pleased to see us and as we had before we felt a little more at ease after we had arrived. We also thoroughly dicussed our arrangements to assist the RMH next Wednesday and Thursday with their Charity Golf Tournament and Hard Hat Media Tour of the new RHM in Fargo. We have agreed to be the RMH guest family to help promote the RMH during these events. Tory and I have been offered lodging by one of the sponsors (Travel Lodge) and will attend the golf tournament on Wednesday to interact with the many participants. We will then attend the benefit dinner that evening and Tory and I will be the guest speakers. On Thursday we will also speak at the ceremony for the new RMH and probably spend a little extra time meeting with the various media agencies in attendence. Our efforts are intended to maintain support for the RMH so that it can continue to help families like ours.
Our schedule for the remainder of this week and for next week will remain very busy. Tory will continue her chemo through Friday night. She will also be attending school during the day if she is up to it. This weekend will probably be filled with rest and relaxation. I don't know if we will make it to the pool this week or not. Next Monday we return to Fargo so that Tory can receive another respritory treatment. She will attend school on Tuesday and then she and I will return to Fargo that afternoon for the RMH events and stay until Thursday afternoon. I'm not sure what we have planned for next Friday or weekend. We will obviously be trying to do some additional things with Tory in the upcoming weeks as we prepare for her next surgery. Since our return home we have had many discussions about it, and Tory is now more in favor of having it done. She continues to be a very amazing little lady, and let there be no doubt her determination and resolve to defeat her cancer has and will not waiver.
Well, that is pretty much it for the moment. We would again like to thank everyone for your continued support, thoughts and prayers. Please continue to think of Tory when you can. She remains, very strong, determined and courageous.
Love Troy and Family
Friday, June 4, 2004 6:49 AM CDT
Good Morning:
Well, it is hard to believe that another two weeks have passed. I apologize that I have not provided any updates in quite some time. We simply get caught up in everything we have to do each day and before you know it you get behind in one way or another.
Tory continues to be very strong, determined and courageous. The surgical aspects of her recovery are continuing to show some form of daily progress. She is walking more each day and getting more confident in doing so. She really hates to be assisted any longer but tolerates it when it is necessary. She can pretty much go up the main stair case in the house, and is getting better at descending it. Except for the stairs, she has pretty much mastered moving around inside the house on her own. Her speech continues to improve. Her pronunciation and voice strength are getting better each week. She loves to sit or stand and talk with anyone she might encounter. She has a lot of thinks to share with anyone that has a little time to listen. Her rate of speech is still slow, however, it is also showing some improvement. Her memory is unbelievable. She did not experience any visible problems there, either with short or long term. Tory's appetite is unbelievable and she continues to eat very good each day. She is continuing to regain some of the weight she lost, and this is making her appear much healthier and stronger. Although her left side is still visibly weaker than her right, we continue to see that it is getting stronger and her coordination is slowly improving. She continues to do the things she needs to improve this. I have also observed that many of her new daily activities force her to use her left hand more which in turn is helping her rehab. Tory continues to alternate between wearing her glasses and patch, however, she is wearing her patch much less than she was even a few weeks ago. She says that her vision seems to be improving slowly and she is determined that she is going to do everything she can to make it return to normal. Tory has indicated that although she still sees two of everything when her glasses are off, the objects are moving closer together. We feel this means that her injured eye muscles are regaining their strength, which in turn is slowly realigning her sight. This is very, very good news.
Many, many things have occurred in the last two weeks and it is difficult to summarize everything. We did travel to Fargo the Tuesday before last and Tory received her respritory treatment. We also said hello to all the doctor, nurses and specialists at the hospital and cancer center. After we were done, we took Tory over to the Olive Garden Restraunt for a wonderful lunch. Tory had been asking to eat at the Olive Garden for quite some time, and we felt it was time to make it happen. It turned out to be everything she expected and we all left with very full tummies.
The Thursday before last, Tory and I went to the AFB Clinic and had a lengthy visit with Dr. Neselrud. She is Tory's local primary pediatric care manager (Children's Doctor) at the base. All of Tory's vital signs were good. We basically just reviewed everything that Tory had been through and her recovery and future treatment needs and so on. This was done to catch Dr. Neselrud up on everything that has happened and reacquaint her with Tory, in the event Tory needed to see her sometime in the future. Just prior to leaving, Dr. Neselrud commented that she had read all of Tory's medical reports and based upon everything she had been through, did not expect her to be doing as well as she was during their visit. She was very, very pleased with her progress so far. After we left the Clinic, Tory and I then visited the new base pool that she had never seen since it was constructed. Tory was very impressed with how nice it was and was obviously very eager to get the chance to swim in it. We then went and made arrangements for Tory to begin participating in one of the weekly water aerobic classes before returning home.
We really didn't do anything special over the Memorial Day weekend since the weather wasn't so great. We did sit outside by the camp fire and camper last Friday and barbecue with some of the neighbors that stopped by to say hello. Tory enjoyed being outside very much and we all had a wonderful time together before the weekend thunderstorms and rains arrived.
Tory began her summer school on Tuesday and has now completed her first week. She enjoyed it very much. She really enjoys being back around the teachers and other kids that are also attending the summer session. This will last five weeks and not four as I previously stated.
On Wednesday afternoon, Tory and I attended our first water aerobics class. There were only four of us in the class that day counting the instructor Mrs. Waters. Mrs. Burke and Mrs. Waters assited Tory in and out of the dressing room, which was a very big help. The class lasted one hour. We never expected Tory to really follow the whole program, however, she amazed us all. She hung in there the whole time and stayed busy doing something for the whole hour. She was so happy to be in a pool again and really had a lot of fun. It was good to see the big smile on her face and hear her laughing and so forth. She was a very good little swimmer before all this developed, and everything seemed to come back. When she was in the water, she was very comfortable and did not have any problems what so ever. We are convinced that the water therapy will allow her to make significant progress with her strength, balance, coordination and so forth. We were both pretty tired when we were done. It didn't take Tory long to fall asleep that night after her bath. We were both a little stiff and tired yesterday and it was decided that Tory should rest up a little before returning to the pool. Mrs. Waters and Mrs. Burke agreed and were very impressed with how well Tory had did the night before. Tory and I will return to the pool next Tuesday, and probably try to attend the water aerobics class twice a week on Tuesdays and Fridays. This will give her a chance to rest up a little between sessions.
Over the past week many other things have happened as well. We recevied and sent in Tory's application to attend Kamp Kace (Kids Against Cancer Everywhere) in July. Yesterday we were notified that she was accepted and we will be completing the additional registration requirements over the next few days. We also received the assessment report from Merit Care hospital that we had been waiting for for quite some time. It really didn't hold any suprises, and as we expected some of the findings for Tory's evaluation on April 14th, are now outdated due the the progress she has made since that time. This does allow us to begin making arrangements with Altru Hospital here in town so that we can resume Tory's rehabilitation therapies. Teresa and I will also be doing that this coming week. It is not presently known what or how often Tory will be attending therapy sessions here locally. We also had to experice the unfortunate event of losing one of our pets. Sony (our adopted Golden Lab) was killed sometime between Wednesday and Thursday morning, when he got caught in a trap for some kind of very large rodents or varmits. Tory and I found his body in a field north of the house yesterday morning and as one might imagine it was a very traumatic experience seeing Sony laying out in the field along side the road. I have since recovered his body and he was buried along side our other long time companions (Butch and Dexter) out on property.
Tory will be relaxing and resting up today so that we can attend and participate in the the American Cancer Society's "Relay For Life" this afternoon and evening in Grand Forks at University Park. We plan on going down at about 4:30 and meeting some of the different teams that are supporting Tory as well as others in this event. We will participate in the Cancer Survivor and Caregiver opening ceremonies and then play it by ear. We hope to be able to stay until at least dust (9:00 - 10:00) when all the special luminaries are lit. We will not be staying the entire night like all the teams that are participating.
I think Tory and Teresa plan on trying to go see the new Harry Potter movie this weekend, but other than that we should be around the house. Tory will resume summer school next week. Our next trip to Fargo will be on Monday, June 14th. Tory will have many, many appointments that day. Among other things she will see Dr. Kobrinsky (Medical Oncologist) and Dr. Thomas (Neurosurgeon). She will also have another MRI and a variety of lab tests. It will be a very busy day. Her next chemotherapy cycle will also begin that night.
Once we get Tory's additional rehab schedule confirmed, I anticpate that our schedule will once again become very, very busy. We will again have to find a balance between all of her activites and rest to ensure that she doesn't over do it and get too wore out. As has been the case in the past, we will continue to take everything a day at a time and make adjustments if necessary.
We would again like to thank everyone for your continued thoughts, prayers and support. Although I have said it many times before, I have to continue saying that we would not have made it this far without them. Tory continues to be very strong, determined and courageous. Your efforts have contributed to this immensely. Thank you all so very much. Please continue to think of Tory when you can!
Love Troy and Family
Saturday, May 22, 2004 3:44 AM CDT
Good Morning:
Well, Tory has now completed taking her chemo medicine for the first cycle of Phase 2. I must say that although the first two days were pretty rough for her, the last three days have been much better. She only woke up once on Wednesday night about 3:00 a.m. and had one short episode of nausea. On Thursday and Friday night we finally got things figured out or her body became acustomed to the medicine, and she slept soundly throughout each night without any nausea whatsoever! Now we have 23 days of rest to complete cycle 1 and then repeat the whole process over with cycle 2. Cycle 2 is scheduled to begin on Monday June 14th. Hopefully, it will not be as rough for Tory at the beginning as this last one was. June 14th is also the next time that Tory gets her next thorough assessment with all her doctors, her labs and her next MRI.
Although Tory had some rough nights this past week, we were still able to attend school on 3 out of the 4 days. This last chemo experience was much different than the first time around. Once Tory would wake up in the morning, she felt pretty good and did not continue to be nauscious throughout the day. She did not have any nausea episodes during the day at any time, which was a big relief to us all. She also maintined her appetite and was ready to eat whenever she could. Due to this Tory was able to attend the last official week of school and participate in most of the various activities that were occurring. She really enjoyed and needed that.
On Thursday (last day of school), they had the monthly awards ceremony. At that time, Tory was presented with her classes Student Of The Month Award for May. I think everyone felt she was very deserving of it for all her recent efforts at school and elsewhere. I was also presented with an award for being a very good father. I was very surprised when my name was called and I was asked to step out in front of all the 4th and 5th grade students and receive it. Tory was also officially informed on Thursday that she will move onto the 6th grade this fall with her classmates. She was very, very excited about that.
Tory will now have a couple weeks off from school and then she and I will return for summer school in June. It begins on June 1st and will go through June 24th (my birthday). During the summer school session she will primarily be working on the mathmatics she has missed so that she will be prepared for the 6th grade math. Overall she is very excited about attending the short summer school session and realizes that it will help her get caught up a little and be prepared for 6th grade.
Yesterday Tory and I went to town and ran several little errands and stopped at my office to visit with Ross, Kayle and Reid. We got Tory registered for the Amercian Cancer Society's upcoming Relay for Life event here in Grand Forks on June 4th and 5th. Tory, Teresa and I will be participating in it as much as we can and we will all be doing the first two laps that are reserved for Cancer Survivors and their care givers. We will also try to stay until the many luminaries are lit at night fall.
Tory and I had a great visit with everyone at my office. It was so good to see Ross, Kayle and Reid and just sit around and visit for awhile. Tory had her first short trip with someone besides Teresa or I. She accompanied Ross to Widman's Candy Store a few blocks away and they did some shopping for candy. After they returned, everyone had to eat the assortment of goodies they got and Tory really liked that part. Ross and I got the opportunity to visit for the first real time in a long long time and made some tentative arrangements for me to return to work around mid or late July.
We will pretty much be resting over the weekend and plan on possibly having some sort of little celebration tonight since Tory won't have to take any chemo medicine and can stay up and eat anything she wants.
Next Tuesday we will return to Fargo and Tory will receive another pentamidine (respritory) treatment to keep her immune system strong. On Thursday, I have made an appointment for her to see her Primary Care Physician at the Air Force Base. This is primarily for Tory and Dr. Neselrud to visit with each other and become reacquainted, since Dr. Neselrud has not seen Tory since the tumor was discovered in January.
We might also do a little swimming next week at the base pool if everything works out. Tory is very excited about getting to splash around. I have got things set up where she can attend one of the afternoon water aerobics classes. One of the teachers at her school is the class instructor and her principal Mrs. Burke also attends the class.
The only other thing I failed to mention recently is that Tory had her first fall last Sunday afternoon. She apparently got her feet tangled up while getting out of her downstairs bed and trying to put her slippers on. This caused her to fall into the nearby nightstand and she hit her arm pretty hard. We are fortunate that she did not hit her head. She has a couple pretty good bruises on the inside of her arm, but other than that was not injured in any other way. It reminded us all (especially Tory) that accidents can happen at any time and she has to continuously be paying attention to what she is doing.
Well, I think that's it for now. I probably forgot something but I can't think of what that might be at the present time. We are so very grateful for everything all of you have done to help us during the last several months. It has allowed us all to be where we are at today. We love and thank you all for everything. Tory continues to be so very, very, very strong, determined and courageous. Your thoughts and prayers have helped her do this and helped Teresa and I continue to make the difficult decisions involved with Tory's treatment and recovery. Please continue to think of Tory when you can and be assured that she has and will continue to get much strength from them.
Love Troy and Family
Wednesday, May 19, 2004 8:25 AM CDT
Good Morning:
Tory had a very good weekend and got lost of rest. On Monday morning all three of us (Teresa, Tory and I) were pretty restless in anticipation of Tory beginning Phase 2 of her cancer treatment that evening. All of us got up very, very early. As a result, Tory and I arrived at school about 8:15 and she attended all of her classes throughout the day. That afternoon, many of the students and teachers had a special little presentation for Tory. She was shown all the luminaries that were decorated and will placed out at the relay for life in her honor, as well as a special cheer her fellow cheer leaders developed just for her. Everyone also got together in the science classroom and sang a song for her and then Ms. Grohs (Cheer Leading Coach) presented Tory with a special award. I could see that Tory was very touched and overwhelmed. Afterwards as we drove home, she admitted that she came very close to crying.
When we got home that afternoon Tory went ahead and took a nap in preparation for her first dose of medicine that evening. After Teresa got home from work, we all stayed pretty close to one another and had a very special supper. We then implemented our plan and Tory began taking the different medications in preparation for her dose of the chemo medicine. We all tried to joke around a little and not get to serious, although we were all concerned about how things would go after Tory took her chemo medicine. Although this is not the first time Tory has taken the chemo medicine, a lot of things have changed this time around and none of us were quite sure what to expect.
Tory took the chemo medicine at about 9:15 p.m., (300 mg). She didn't have any problems swallowing it or anything like that. Teresa stayed with her in her bedroom and I was in our room next door. It wasn't long before Tory went to sleep, and then we waited to see what happened. Around midnight Tory had to get up to use the bathroom, and this started a series of nausea episodes that were very frequent at first and slowly became less frequent by about 4:00 a.m. By about 6:00 or so, Tory finally quit becoming sick and finally fell asleep. So did Teresa and they slept until almost noon. As you might expect we tried everything we could think of, or that had worked for us before, to make Tory comfortable and control the nausea but everything either had not effect or seemed to cause a vomitting episode. We did find that towards the end, some hot tea I made Tory to sip on seemed to settle her episodes down and extend the period of time between each one.
Tory did not attend school on Tuesday and she and Teresa pretty much rested in preparation for the second dose of chemo medicine later that night. We did observe that after Tory woke up she felt pretty good and was hungry. She did not have any other nausea episodes during the day which was a relief. She ate a variety of things throughout the day and stated everything she ate tasted good. This was good news.
That evening Tory took her chemo medicine at about 9:00 p.m. This time she also had some of the hot tea after doing so and she stayed awake sipping her tea until almost 10:30. She then fell asleep and slept until about 3:00 a.m. when she again began experiencing nausea episodes. Although this was disappointing, this was an big improvement over the first night. The episodes were not as intense or long in duration and were much further apart (45 minute intervals, versus 10 to 15 minute intervals). These passed by about 5:30 a.m. and Tory fell back to sleep and is still sleeping as I am preparing this update. We can only hope that tonights dose will cause even less problems for Tory.
The good thing so far is that all the medicine has stayed down for several hours before the nausea begins so it is being digested. As you might imagine, we are all eagerly awaiting Saturday morning when all the chemo medicine is done for this cycle. Teresa returned to work this morning and I am waiting to see when Tory is going to wake up and how she feels when she does. We might or might not go to her school today, depending on how she feels and so forth. Her school gets out for the summer tomorrow, but as I already stated she will be attending summer school in Jun.
I really don't think there is much else to add at the moment. We will continue to get through the week one day at a time, and hope for the best. Tory is really working hard and definately doing the best she can under the present circumstances.
We would again like to thank everyone for your continued support, thoughts, prayers and encouragement. It has helped us all so very much.
Love Troy
Saturday, May 15, 2004 5:52 AM CDT
Good Morning:
Well, another week has come and gone. As we expected, it was a very busy week. We had a wonderful mothers day with Teresa on Sunday, although Kim and Tara could not join us as we had planned. Tory attended school every day except Wednesday when we went to Fargo for her follow-up evaluations and so forth. She also participated in the schools spring concert on Tuesday night and we went on the field trip with her class and the 4th grade yesterday. Needless to say she was worn out when we got home from school yesterday and it didn't take long for her to fall asleep and get some much needed rest. As far as I know we will staying home this weekend to rest up in preparation for Tory starting phase 2 of her treatment on Monday evening.
On Monday afternoon after school, Tory had her dentist appointment. She got a thorough exam and her teeth cleaned. Everything went well and there were not any problems. The dentist and his staff were very cautious when working around her gums to ensure they didn't open any wounds and so forth. It was determined that Tory's teeth were in great shape and once again she didn't have any cavaties.
During the spring concert on Tuesday night, Tory was able to perform as anticipated. She stood along side the risers and did a wonderful job. She was disturbed that she didn't know all the words to all the different songs, but considering the short amount of time she had to learn them she did an outstanding job. This was the first time that many of the parents at the school got to see her since her return and as you can imagine it was a very important evening for everyone.
On Wednesday we did return to Fargo for all of Tory's follow up evaluations and/or appointments. As expected it was a busy day. Tory started with lab work at the cancer center. Compared to our previous experiences this went pretty good. The lab tech was able to get the vein the first time without any major problems. This was a big relief. Tory then went to the hospital for her MRI. Although we were prepared for this to be a lengthy one, it wasn't to bad and only took about 30 to 35 minutes. It was only taken of Tory's brain with contrasting views. She had to get the dye injected to provide the contrasting views, and that went well without any problems.
After the MRI, we were off to see the eye doctor. Dr. Nelson was very pleased with the progress that had been made. It was his belief that the injured muscles in Tory's eyes are slowly beginning to heal themselves. Tory did a very good job of describing her present condition to him. Although she still see's double when she isn't wearing her glasses, or when she looks at things or tries to read things close to her with her glasses on, she only sees one of everything at a distance with her glasses on. She also noted that when her glasses are off, the separation between the two objects she sees is getting closer, which indicates that the eye muscles are beginning to get stronger and starting to slowly realign her line of sight. As a result, Dr. Nelson recommended that we continue what we have been doing so far (alternating between glasses and patch) and come back in 3 months for a follow-up or sooner if a new problem or deficit develops. After much discussion, it was decided that it wouldn't be necessary to get Tory a second pair of glasses/prism's for reading and viewing close objects at the present time.
When we returned to the cancer center, Tory was weighed, measured and then underwent a thorough exam with Dr. K's assistant (PA Pediatric Medical Oncologist) Beth Ann. We confirmed that Tory had gained weight. Since she completed her radiation on April 16th, she has gained 8 1/2 pounds. Our goal was at least 5 and hopefully 10, and we have reached it. This was great news. Tory's height was 4'11 1/2" and she is just a little under 110 pounds now. We discussed the lab work that was done. This was a very thorough assessment that looked for many indicators in how Tory's body is working. It is amazing how many things can be learned from a persons blood. All of the lab tests revealed that Tory's internal systems appear to be regaining strength and functioning properly at the present time. Her blood counts (white/red cell/platelets) and so forth were very good and continue to increase to normal limits. The tests were also able to tell that her liver and kidneys are doing what they are supposed to with no need for concern at the present time. Beth Ann really worked Tory over during her exam/assesment and was very pleased/surprised at how well she is doing. She reminded Tory several times that she is a very strong, determined and courageous little girl. Although Tory's left side remains weaker than her right, it was apparent that it is becoming stronger and her coordination on that side is continuing to improve. Beth Ann was also very pleased with how well Tory's speech is improving and the progress she has made with her walking. Overall, at this stage in her recovery, Beth Ann was very, very pleased with the progress Tory has made. We then discussed the results of the MRI which as we expected were not as clear or definitive as we had hoped. The radiologist who read the MRI observed some things in the tumor site that he could not define with absolute certainty. It appeared that the tumor site had enlarged itself, but this could be the result of many different things. It didn't necessarily mean that the tumor was growing. This could also be the after effects of the radiation and so forth. Before leaving, we completed all the arrangements for the next phase of Tory's cancer treatment. She will start phase 2 on Monday evening. It was determined that with her weight gain, she will be taking 300 mg of the chemo medicine per day (as compared to 140 mg per day during phase 1). As I have said before each cycle of phase 2 will be 28 days long. Tory will take the chemo medicine the first 5 days of each cycle and then rest for the remaining 23. Then the next cycle begins and everything repeats itself. It is not clear at the present time how long Tory will remain in the phase 2 cycles (maintenance phase).
As expected Tory is not looking forward to resuming the chemo treatment, but understands that it is necessary and must be done. Although it will only be for 5 days at a time, we really don't know how the increased dose of the chemo medicine will be tolerated. We can only start with what we learned from the last round and make adjustments as required to ensure Tory's comfort and so forth during the process.
On Thursday afternoon we were recontacted by Beth Ann and informed that Dr. Thomas (Tory's Neuro Surgeon) had reviewed her MRI results and was not alarmed by what was seen in the images. Based upon what he saw and how well he had been told Tory was doing, he felt the area of concern around the tumor site was more likely the effects of the radiation and not an indication that the tumor was again growing. However, he requested that Tory see him when we return to Fargo on June 14th, and that she have another MRI on that date so he can keep a close eye on what might or might not be occuring in and around the tumor site. This news was welcomed by all of us and provided us with a little relief for the moment.
Tory has to return to Fargo on May 25th for another respritory treatment. We will return again on June 14th for a variety of appointments and evaluations. Among other things this will be for labwork, preparations for cycle 2, evaluations with Dr. K, MRI and evaluations with Dr. Thomas.
Tory also got clearance to begin swimming. Doing so will satisfy a couple things. It will be great for her morale and so forth, but will also act as a physical therapy which will help many areas of her recovery. As a result I am working on the arrangements to begin taking her to the base pool for a water aerobics class and splashing around during free swim in the afternoons after school. She is very excited about being allowed to resume swimming.
As I mentioned in my last journal entry, Tory will be attending summer school in Emerado during the month of June. This will allow her to catch up on alot of the math that she missed during her absence. She will also be doing some work with english and reading. At the present time it appears the missed math would probably cause her the most difficulty next year when she moves onto 6th grade with her class.
In addition to all the above, I am also in the process of making arrangements for Tory to participate in the local American Cancer Society's annual Relay For Life in Grand Forks on June 4th and 5th. I still have a lot of coordinating to do, but as it stands at the moment Tory will participate in all the Cancer Survivor activities on the afternoon and evening of June 4th. I am also beginning to try and arrange for Tory to attend KAMP KACE in August. This is a special camp for young cancer patients. It is located somewhere south of Detroit Lakes, MN., and is a week long. It is a very special camp and all of Tory's cancer doctors and nurses as well as many other medical professionals staff the camp during the week to ensure all the attendees receive everything they need while being allowed to just be kids and have as good a time as they possibly can.
Well, once again I think I covered most of the developments over the last week. We continue to appreciate all of your help, support, thoughts and prayers. Words cannot say how much everyone's support has helped us all. We are and will remain forever grateful for all of your generosity. As always, please continue to think of and/or pray for Tory when you can. She continues to be very strong, determined and courageous.
Love Troy
Saturday, May 8, 2004 4:29 AM CDT
Good Morning:
Well, another week has passed and Tory is continuing to make noteworthy progress in regards to the surgical aspects of her recovery. It is apparent that her return to school, even if for half days, has been very good for her. The school environment is challenging her to do many new things she has not done for a while, which in turn is contributing in many ways to her overall recovery.
Tory finally got past the worst of her cold or sinus irritation on Tuesday. She still has some slight sniffles from time to time, but the worst seems to be past us. We were able to get through the event without having to go into the clinic or hospital which was a great relief. Tory also did a very good job of passing it on to me, which leads me to believe it was more of a cold. At least I know what I got was and it was not pleasant at all. The worst of my symptoms have now pretty much passed as well. Somehow Teresa managed to avoid the whole thing so far.
Tory and I returned to school on Wednesday. We went for a part day from first bell to a little after lunch. Teresa and I now feel that Tory can handle the half days, but the full days are still too much. That morning the school had a presentation about Lasers. It was very interesting and Tory as well as all the other students enjoyed it very much. On Thursday we attended in the late morning and stayed until school was dismissed. That afternoon there was a combined performance by the school band and a local group of nearly Senior Citizens that have formed a local band. It was very good and brought back a lot of my band and choir memories from grade school, junior high, high school and the Air Force. Yesterday we also attended in the late morning and again stayed until school was dismissed. This seems to work best for Tory and allows her to get adequate rest before she wakes up to start her day.
Last night we attended the school's spring dance for the students in 5th through 8th grade. As a matter of fact I was the DJ and Teresa was an unofficial chaperone. Of course Tory was there. There was no way she was going to miss it if she had anything to say about it. It was a black light dance, so everything glowed inside the gym and so on. Tory and all her little girl friends had a teriffic time and created many new memories that will never be forgotten. In fact, Teresa and I saw Tory experience her first slow dance ever and to say the least that is one of those memories that is priceless. I was informed that I did a good job working the jams and everyone was impressed with our equipment. For the first time in quite a while it was apparently loud enough to satisify all the attendees. Tory had a wonderful time and was very excited that I helped with the music. This is one of those evenings that just can never be replaced or forgotten. When we got home we were all wore out and it didn't take long for everyone to hit the sack.
Today will be a lazy day. I think Teresa and Tory are going to do some grocery shopping and I will try to get all the details to obtain our new mobile cell phones worked out and then try to get a little of the outside chores caught up. Tomorrow we all plan on meeting Kim and Tara at the base and having Mother's Day Brunch at the Enlisted Club. Who knows what will happen after that.
We have a very, very busy schedule next week. Besides Tory attending school when she can, she has many other local and out of town appointments we will be going to and then a field trip on Friday that I will be helping chaperone.
On Monday Tory has her first dental appointment since her tumor was discovered. We have learned that there are many special concerns and precautions when treating a patient like Tory and Teresa got most of the obvious things worked out this past week in preparation for that.
Tuesday night is the schools spring concert. Tory will be attending and participating to some extent although she will not be standing on the risers with the other choir members. As I understand it, she might be helping direct the choir and band and playing a percussion instrument of some sort during a few of the choirs songs. I know she will try to sing a long a little, but she isn't quite ready to take that step yet. I myself and many others cannot wait for the day that she once again begins to sing.
On Wednesday we have to return to Fargo and Tory will have many appointments. She has to get all of her lab work done that morning and then get her big MRI. This is the first MRI since her last surgery and subsequent 1st phase of the cancer treatment were completed. This MRI is very important and will become the baseline to measure her future progress. Among other things, Tory also has a reevaluation with her eye doctor, and will have a thorough evaluation with her cancer doctors staff. By the end of the day, all of the preparations for her next phase of chemo will be completed and so forth. If there are no problems, she is still scheduled to begin phase two on Monday, May 17th. Teresa and I are already starting to discuss Tory's upcoming medication schedule when her chemo resumes. As one might expect she will again begin taking many medications to comfort her and/or counteract the side effects of the chemo medicine. We are also hopeful that the eye examination will reveal that the muscles in her eyes are beginning to heal/correct themselves. It also might be a little early to tell. The prism's in Tory's glasses have helped but she still gets double vision when she tries to read or look at things closer to her face. As a result she still wears her patch quite a bit.
Since Thursday is our 19th wedding anniversary, we might try to do something that afternoon if anyone has any energy left. On Friday the 4th and 5th grade classes are going to Grand Forks to visit the art museum, have lunch at Burger King and then visit the Memorial Union at the University of North Dakota campus. By Friday evening Tory should be a bit tired and we will probably stay home next weekend and rest in preparation for Tory beginning phase two on the following Monday.
Tory continues to be a very determined, strong and courageous little lady. Words cannot explain how wonderful it is to see her make the progress she has and continues to make in her recovery. Each day she becomes a little more confident and in turn a little more independent. She still requires assistance or direct supervision with many things, but she has come a very long way since her release from the Merit Care Hospital in late February. Since we are still waiting for the formal rehabilitation evaluation recommendations from Merit Care, we have not yet been able to resume Tory's PT, OT and speech at the Altru Hospital. In the interim, we have developed a somewhat generic IEP at the school to ensure Tory receives the resources she needs and also ensure she will be allowed to move onto the 6th grade with her present classmates next year. Overall, Tory did not fall as far behind as one might have thought considering how much school she missed since X-mas. We have enrolled her in summer school, where she will be able to focus on some of the math she missed which will probably cause her the most difficulty of anything she missed.
Well, that's most of what's been or will be happening for now. Thanks to everyone for your continued thoughts, support and prayers. Tory's recovery so far is the direct result of all your efforts. We cannot say enough about how much this has helped us all. As always, please continue to think of and/or pray for Tory when you can. She has and continue to gain much strength, determination and courage from these.
Love Troy and Family.
Saturday, May 1, 2004 4:48 AM CDT
Good Morning:
Well, it is very hard to believe that it has been over a week and a half since I provided my last update. I apologize for the delay! So much has happened so fast, that it is hard to keep up with everything. Once again we would like to thank everyone for your continued thoughts, prayers and support.
Tory's reentry into school has went very well. The presentation that was provided to her class and some of the faculty by the Merit Care Staff was terrific and very helpful to everyone. Tory and her classmates had the opportunity to discuss every thing she has been through and learn much more about what lies ahead. There were many very good questions asked and I think everyone had a much better understanding of what Tory has already and will be experiencing in the future. Tory's classmates as well as all the other students and faculty at the school were very excited to see her return. Tory's classmates made some very special posters and a signed T-Shirt to welcome her back.
Tory attended school for part days during the week. The first two days were mainly the late morning and afternoon and the last two days were from early morning to a little after lunch. By day three it was apparent that she was getting a little wore out, and by last Friday it was obvious her battery was running low. She took very good naps in the afternoons when we would return home.
On Friday night Tory got to visit with a variety of friends and guests that arrived out at Magoo's and our place for the annual motorcycle show in Grand Forks and the Saturday night benefit party. We all had a wonderful time visiting and Tory finally got to be outside a little and sit by the camp fire and listen to music. Of course she requested that her KISS CD be played and it was. Tory and her girl friends from Fargo also roasted marsh mellows and had a great time.
On Saturday Tory and I went out to the Heidecker's home and visited with everyone that was helping cook two pigs and several pork loins for her benefit that afternoon/evening. During our visit Tory and Thieda Heidecker had a very good and meaningful visit about cancer and the subsequent treatments. Cam Behm was also involved in the discussion and it was so very helpful to Tory to be able to talk about everything she has been through and that lies ahead in her treatment and recovery. Before leaving, "H", Chuck Behm, Brent and the rest of the crew let us sample some of the pork and it simply melted in our mouths. It was absolutely wonderful. We all got a few team photos and then Tory and I returned home. As expected many guests were already arriving and setting up their overnight camp sites when we returned home. People continued to arrive throughout the night. The food was great and so were the three live bands that performed. Tory got the chance to get out and circulate a little with everyone and had a very good time.
On Sunday we said our fairwells to many of the visitors and guests and Tory pretty much rested as did Teresa and I. Tory was still wore out on Monday and stayed home to get some extra rest.
On Tuesday we returned to Fargo for Tory's scheduled appointments. She received another respritory treatment and we also visited all of the Therapists at Easy Street and all of her specialists and technicians at the Cancer Center. Tory and everyone else were very excited to see each other and had lots of things to share with one another. While at the cancer center we also got to see Grandma Bonnie who was receiving radiation treatments at the same time as Tory. It was so good to see her, and she only had one more day to go. We were all very excited that she was almost done. Tory was weighed before we left and we learned that she had finally began to gain some weight. It was determined that she had gained about 5 pounds since she was last weighed on April 16th. Everyone was very excited and could not believe how much progress she had made in only a little over a week. It was clear that her speech, appetite, balance, coordination and physical strength were continuing to improve and she was applauded for her efforts.
Tory and I returned to school on Wednesday. We had hoped to try a full day, but didn't arrive until 9:00. Tory attended all of her classes for the remainder of the day and was very excited to have made it through the most complete day yet. Once again she was tired when we got home and took a nap without any prompting. On Thursday, we arrived at 8:30 and Tory completed her longest day yet. Once again she participated in all of her classes and really enjoyed being back around all of her teachers and friends. She was wore out after school and again had a very good nap when we returned home.
On Thursday morning I observed that Tory was developing a runny nose, which became more evident on Thursday night. This caused her to be very restless during the night and was accompanied by a slight cough and sore throat. Due to this Teresa and I felt we needed to watch the developments very closely, but were reluctant to give Tory any medications without guidance from the Cancer Center. On Friday morning Tory's head congestion was increasing, so I kept her home from school and called the Cancer Center for instructions. After considerable discussion of her symptoms a course of action and treatment was determined. For the moment it is believed that she is probably having more of an allergic reaction to the spring conditions outside. This is probably being caused by her increased exposure to the outside elements. I began giving her the recommended childrens cold medicine and her congestion improved almost right away. Over the weekend we will continue to watch this very closely and if she develops any other symptoms such as fever, cough, sore throat, ear ache, head ache, etc., we will have to go to the local hospital or clinic for throat cultures, blood work and so forth. We hope this does not become necessary.
As I mentioned Tory's interest in food and appetite have improved considerably. She has gained at least 5 pounds since we left Fargo and is basically an eating machine now. It seems like she is always asking for something to eat and eating sizeable portions when she does. This in turn is making her feel much better. It is so, so good to see her start to fill back out a little. She also really likes to stop at Dairy Queen on the way home from school for a small cookie dough blizzard, and she usally eats the whole thing by the time we get home depending on which route we take home.
We pretty much plan on staying around the house this weekend and allowing Tory the chance to rest and get better. We will of course be watching her very closely and if necessary take her in for more tests depending on what does or does not happen. If everything goes well, Tory and I will return to school on Monday. Teresa and I are still contemplating whether we should cut her daily schedule back a little to ensure she recieves the rest she needs.
I know I missed some stuff, but I think what I have provided gives everyone an idea of most of the things Tory has been involved in over the last week and a half.
Once again, we thank all of you for your continued thoughts, prayers and support. This has allowed us to be where we are at today in Tory's treatment and recovery. There are still many unkowns ahead in the future, but as we have so far we will take everything a day at a time and adjust accordingly. Please continue to think of Tory when you get the chance, your thought and prayers have and will continue to give her the strength, determination and courage she has displayed so far. We love and thank you all so very much!
Love Troy and Family
Monday, April 19, 2004 8:56 AM CDT
Good Morning:
Tory had a very good weekend and continues to make daily progress in her recovery. She really enjoys not having to take all of the medications she had been taking. This has caused her to regain her interest in food and appetite. She ate very, very good over the weekend and we hope that she will soon begin to gain some of the weight she has lost.
We have already and will continue to be very busy today, making preparations for Tory to return to school tomorrow. Although she will only return for half days at the present time, she is very excited about doing so. The reentry presentation by the Merit Care Staff with her class is scheduled for tomorrow morning at 10:00 a.m. We will then spend some time discussing her present and known future needs with her teacher and the school principal. We all agree that we must remain flexible and what works today might have to be modified for tomorrow and so forth.
I have to say that we would not have made it this far without all of your support and Tory's strength, determination and courage. Thank you to everyone for all your help and support.
Tory will continue to be very busy this week and into the weekend when another benefit sponsored by the local motorcycle clubs will be held during the annual Grand Forks Motorcycle Show. She is very excited about getting to see and visit with the various guests that will be attending.
For the moment Teresa and I will continue our efforts to provide Tory the stimulation she needs and yet ensure that she recieves adequate rest and so forth. This is a lot easier than it sounds, but as always I'm sure we will get it figured out.
Thank you again to everyone for your support and assistance. We are so very grateful for everything that has and continues to be done to help us out. As always, please continue to think of Tory when you can. She is a very courageous and special little lady. She gains much of her strength, determination and courage from your thoughts and prayers. Thank you again so much.
Love Troy and Family
Saturday, April 17, 2004 5:26 AM CDT
Good Morning:
We had another very busy week in Fargo and Tory has now completed the first phase of her cancer treatment and rehabilitation. She took her last dose of the chemo medicine on Tuesday night and had her final radiation treatment on Friday. She also met with a variety of doctors, nurses and other specialists during the week that have been involved in her treatment and recovery.
During the week we learned that everyone is very pleased with Tory's progress so far and that she had definately exceeded everyone's expectations to this point. This resulted in the recommendation that we make preparations for Tory to return to school before the school year ends on May 20th. This was very good news but did catch all of us off guard. It was tentatively agreed that she would go back to school on a part time basis for the month of May, however, yesterday Dr. Kobrinsky (Medical Oncologist) moved this up and feels she is capable and should return as soon as possible. Due to this development we are all scrambling to make this happen and Tory will most likely return to school on a limited basis beginning this Tuesday. It was agreed that she will not be riding the school bus any time soon and for the time being I will be accompanying her to school to assist as needed. Tory is very excited about returning to school and not only resuming her studies but becoming reacquainted with all her classmates, friends and teachers.
We are now back at our home in Grand Forks and will no longer be staying in Fargo during the weekdays now that Tory's radiation treatments have been completed. We checked out of the Ronald McDonald House yesterday morning. Although we were all very exicted about being able to return home, it was also a very sad time since we had been there for 71 days and became very close to all the many staff members. Before we could leave we had to promise to return for visits and we do intend to do that on our upcoming trips to Fargo for Tory's future treatment needs.
We will be waiting for the results and formal recommendations of Tory's major evaluation and assesment she underwent on Wednesday. It appears that at a minimum Tory will be encouraged to continue her various therapies (speech, occupational and physical) here in Grand Forks at one of the Rehab centers. When, where and how often has yet to be determined.
Tory will have to return to Fargo on April 27 for another respritory treatment and some prelim stuff at the cancer center. She will have her next major MRI on May 12th, at which time she will also have some labwork done and the arrangements for her next phase of her cancer treatment will be completed. If I recall correctly she will begin phase 2 of her treatment on May 17th. In the mean time we are going to try and let Tory rest as much as her busy schedule will allow.
Considering everything Tory has been through so far, all of the doctors agree that she is a very remarkable little lady. So far she had not experienced many of the potential side effects that were expected under all of the various aspects of her treatment and recovery. However, there are still a variety of potential side effects (deficits/complications) that could develop and we will have to continue to watch her very closely for the time being.
We all plan on trying to get some much needed rest and relaxing a bit over the weekend. I will also be trying to pick up the dogs and return them home. We all miss them very much and are so grateful for everything the Martin's did to take care of them while we were gone.
We would again like to thank everyone for your continued support and assistance. As I have said many times before, we would not have made it this far without all of you and your continued generosity! We love and thank you all! Please continue to think of Tory when time allows. Your thoughts and prayers, have and will continue to give much strength.
Love Troy
Saturday, April 10, 2004 4:50 AM CDT
Good Morning:
Tory once again had what we have to consider as a very good week. Her cancer treatments are continuing without any major problems and she continues to make visible progress each day in regards to the surgical aspect of her recovery.
Some of her activities this week included physical, occupational and speech therapy, as well as meetings and evaluations with the medical and radiation oncology doctors and a meeting and short evaluation with the neuropsychologist. All of the above specialists were very pleased with the progress in Tory's recovery so far and her continued strength and determination to endure the cancer treatments and move on to other things in her life. With a few minor exceptions, Tory has pretty much whipped right through the cancer treatments as if she wasn't even taking them. There is still a very long way to go, but this is very good news so far. I really think everyone that comes in contact with Tory gets strength and inspiration from her to deal with their own difficulties or life issues. I also think she does in fact know everyone at the Meritcare Hospital and Cancer Center, and makes every attempt possible to visit with them all whenever she sees them.
Tory also helped one of the news stations (WDAY) in Fargo make a story or commercial for the Ronald McDonald House this past week, and she had another visit from Sassy one of the therapudic pets. On Friday she received several little easter gifts from her many friends at the hospital and everyone was so happy to once again see her get to return home for the weekend.
We have again returned home to Grand Forks for the weekend. We don't really have any firm plans and will pretty much play it by ear. As has been the case over the last several weeks, Tory's condition will pretty much dictate what we do and don't do. We again plan on returning to Fargo on Monday morning.
This coming week will complete Phase 1 of Tory's cancer treatment. She will take her last dose of the Chemo medicine on Tuesday night and her last radiation treatment will be on Friday (April 16). This will be a very busy week for her, even though she will only participate in her speech, OT and PT on Monday. She will have extra visits with the cancer doctors and lab work this week in preparation for her completion of phase 1 and preparation for phase 2. She will also have a very thorough neurological assessment on Wednesday that takes up most of the day. In addition, she will be making an appearance at an event in her honor on Wednesday night in Fargo.
If everything stays on its present course, next week should be our last full week in Fargo for the present time. We are not certain if we will check out of the RMH on Friday or the following week. Everything will depend on how well things go in the upcoming week.
Thank you to everyone for everything you have done to help and support us. We are so very fortunate to live in such a wonderful place and to have so many great people helping us from so many places. Tory, Teresa and I know in our hearts that all of your prayers and thoughts have helped us through each day so far and continue to give us strength to face the days and weeks ahead.
Love Troy and Family
Sunday, April 4, 2004 3:56 AM CDT
Good Morning:
We have returned home this weekend as planned. Once again this past week was very busy for Tory, but even still she continued to make progress in her recovery while at the same time enduring her cancer treatments.
I also failed to mention in my last entry that we were finally able to get the prism's for Tory's glasses and she began wearing them (without her patch) on Thursday afternoon. She looks so good without her patch on, but she will still be able to use it on an as needed basis as her line of sight attempts to correct itself. According to Tory her vision is better now with her glasses on and most of her double vision has been eliminated. Now only time will tell if her eye muscles will heal themselves or if we will have to pursue other medical means of correcting them.
We surprised Tory on Friday afternoon and took her back to her school for another visit. We arrived early enough that she got to sit with her class in the lunch room and also see many of the other students and teachers at the school. It only took her a matter of seconds to become engaged in some pretty heavy conversation with everyone. It was a very wonderful thing to see her so excited about something and to exchange all of her thoughts with everyone. After lunch Tory sat in her classroom for one period and then attended her music class. After that it was time to head home and get her nap.
Teresa finally took a moment for herself yesterday and went into town to run some errands and get her hair cut. She needed this very much but has been reluctant to do this since Tory's illness was discovered. It sounds like Teresa enjoyed her time out and she came home with a new hair style that looked very nice but was much different than Tory and I expected.
Tory's classmate Becky Martin came over yesterday morning and spent most of the day with us. Becky and her father also brought Bear and Max (2 of 3 of our dogs) home for a visit. Once again it was so so good to see Bear and Max return home, and it was once again very clear that they are being very well taken care of by the Martin's during our absence. Tory and Becky had a wonderful time and boy did they catch themselves up on every topic imaginable. They also reviewed some of the school work Tory has missed so far, and then got serious about playing some board games. It was a lot of fun watching and listening to them enjoy their day together. After their power lunch of corndogs, cheetos, mozzarela sticks and juice, they played a few more games and then settled down to watch movies. Tory and I took Becky home around 5:30 and while doing so we got to visit with Sony (our third dog) at the Martin's home. Tory was amazed at how much weight he had gained and felt he also looked very good and appeared to be very happy.
Tory and I had a very nice conversation during our drive to and from the Martin's farm and she was very excited about being out and about for awhile. She also pointed out that this was the first day she had not taken an afternoon nap in a very, very long time. It was visible however, that she was pretty wore out and getting tired. After returning home we had a wonderful spaghetti dinner that Teresa prepared and then began our evening medication ritual, which eventually resulted in Tory drifing off to sleep after her Chemo medicine was taken.
It appears that among other things, todays activities will again include some visitors. If the weather cooperates, and it appears it will, I also intend to dress Tory up and take her outside for a bit. She has really been hoping to have a little ride on the ATV and I am going to do everything I can to make that happen. We might also try to cook a hotdog or something on the gas grill.
We will again return to Fargo on Monday morning. Tory will again have an active week, but for the moment it does not appear that it will be nearly as busy as last weeks schedule. We are preparing to start what we refer to as week #5 of the radiation treatments. Tory has two weeks of those remaining. So far she has completed 23 treatments and has 10 remaining. If I have this right, she has now completed 31 of her Chemo treatments and has 11 more days of that remaining. Her Chemo medicine is taken every day for 42 days, and her radiation treatments are Monday thru Friday with rest periods on the weekends. Once Tory is completed with the first round of the radiation and Chemo treatments, she will get 4 weeks to rest before she resumes only the Chemo treatments.
I guess that pretty much covers what I can remember at the present time. Tory would like to say hello to everyone and thank everyone for thinking about her. She gets so excited and overwhelmed when she reads all the messages, emails, cards and letters that she receives each week. There is no doubt that everyones thoughts and prayers for Tory have helped her remain strong, courageous and determined. Teresa and I are so very appreciative for everything everyone has and continues to do to assist us. As you know this assistance and support has allowed us to remain by Tory's side during her surgical recovery and subsequent cancer treatment.
Please continue to think of Tory when able to do so. I have said it many times before but will again say that Tory gets much of her strength, courage and determination from your thoughts and prayers. Once again thank you all for everything you have done to help!
Love Troy and Family
Thursday, April 1, 2004 7:15 PM CST
Good Evening:
Well, it is Thursday and another week of Tory's recovery and treatment in Fargo is almost completed. As we expected Tory had a very busy week. She continued to excel in all her various therapies and show noticeable improvement in one way or another. For the most part her appetite remained good and she ate adequately. I don't think she ate as good as the week before, however, this could have been due in part to the unusual schedule we had this week.
Tory's respiratory treatment on Tuesday went well and she is good for another month. During this treatment she receives an antibiotic that she needs to protect her from a certain strain of pnuemonia. This is necessary since she can not take the traditional antibiotic due to the type of chemo therapy drug she is using for her cancer treatment.
During the week Tory developed a very noticeable rash on her body. It began on her cheeks and then continued to spread onto her back, neck, arms, legs and so forth. After alot of research and discussion it was suspected that the rash was being caused by one of the medications she was taking. It was also believed that one of the other medications that had recently been reduced had been suppressing the rash until it was reduced. It was finally determined that we would also begin to reduce this medication in hopes the rash would go away.
Tory again did pretty well in her radiation therapy. The sides and back of her neck as well as her ears are continuing to get a little darker (red) in color from the radiation treatment. This is causing the skin in these areas to begin to peel as if she had experienced a bad sunburn. We continue to apply a special ointment to these areas following her treatment each day and at night before bed.
Tory's blood work this week again looked pretty good. So far her immune system continues to remain strong and there are not any immediate concerns. This will continue to be watched very closely in the upcoming weeks.
We met with Dr. Bier (Radiation Oncologist) today and he continued to be very pleased with Tory's progress so far. She continues to insist that she is not experiencing any discomfort or pain except for the radiation burns on her ears and neck. Dr. Bier and his staff continue to be amazed at how tough Tory is and how well she is enduring the radiation treatments so far. After Friday's treatment is completed, she will have completed 23 radiation treatments and will only have 10 (2 weeks) left. The last radiation treatment is scheduled for April 16th.
Tory was also seen by Dr. Thomas (Neurosurgeon) and Dr. Ragen (Pediatric Neurologist) this morning for her 6 week follow-up. To say the least they were both very amazed at how far she has come with the surgical aspects of her recovery. Dr. Thomas was very pleased with Tory's progress and credited her strength and determination as key players in her recovery so far. It was hard to believe that Tory has been able to accomplish everything she has so far, when at the same time she has been undergoing a very aggressive and exhausting cancer treatment plan. After some discussion, the doctor's agreed that we could begin to reduce the levels of the anti siezure medication Tory was presently receiving. This is the medication that is believed to be causing her recent rash, and it is not usually reduced for at least six months following surgery. This medication can also cause some of the balance and coordination problems that Tory continues to experience. The goal is to completely discontinue the use of the medication over the next two weeks. This is a major step in Tory's surgical recovery but can also be somewhat risky.
Throughout the majority of the week Tory was encouraged to conduct all of her daily activities in and around the Hospital and Cancer Center without the use of her wheel chair. This meant that she walked more this week than at any other time since her release from the hospital. She doesn't walk unassisted yet and continues to be a bit wobbly, but I could tell that she got a little more confidence each day and overall she was walking much straighter and better by this afternoon.
We again plan on returning to Grand Forks sometime tomorrow afternoon. If the weather cooperates we will try to visit our dogs this weekend and get outside a little bit. I am trying to encourage Teresa to take a little time for herself on Saturday or Sunday, but I am not sure if she has decided whether she will or not.
Tory would again like to see anyone that might have a little time to stop by and visit. We only ask that everyone remember how potentially vulnerable her immune system is at the present time.
Thanks again to everyone for your continued support and encouragement for our family. We are very grateful for everything all of you have and continue to do to assist us.
Love Troy and Family!
Saturday, March 27, 2004 5:35 AM CST
Good Morning:
Thank you to everyone for your continued support during this difficult time. All of your thoughts, prayers, and other forms of support have helped us reach this point in Tory's treatment and recovery, and also continue to give us all strength and encouragement for what lies ahead whatever that might be. Tory continues to be a very strong, determined and courageous little lady.
Tory had another very good week and is slowly continuing her recovery from her surgery. She continues to feel a little better each day and this can be seen in all of her activities. She is becoming more talkative and can really be quite entertaining at times. Her speech continues to gradually improve and it is getting easier to understand everything she says during our many conversations each day.
Tory ate very, very good this past week and pretty much broke even on her weight. This is great and very important. We have found that she really likes eating at buffet style resteraunts since this is almost guaranteed to offer something that appeals to her. None of us ever know for sure exactly what that might be at any given moment.
Once again all of Tory's therapists were very pleased with her progress during this past week. All of them commented on how much her overall condition has improved in the last two weeks. Everyone seems to feel that her surgical recovery has taken a turn in the right direction.
The prism's for Tory's glasses have not arrived yet so she has still not attempted to wear her glasses without her patch. We are hoping that they arrive soon so Tory can begin removing her patch and beginning the process of restrenghting her injured eye muscle.
Tory's coordination appears to be improving but her balance is still not good enough for her to walk unassisted. It remains unclear at this time when she will be able to walk without any assistance or the potential of falling.
Tory's weekly blood tests again turned out very good. Both Dr. Bier (Radiation Oncologist) and Dr. Kobrinsky (Medical Oncologist) were very impressed with how strong her immune system continued to be so far. Tory is now half way done with her chemo and radiation treatments for phase one. The radiation is now causing her to lose her hair around the sides and back of her head, but so far the hair on the top of her head is okay. The areas where the hair loss has occured is where the radiation treatments are being directed. This is also causing her skin in this area and the tops of her ears to appear as if they have been sun burned. We have now began applying a special ointment to this area following her radiation treatments and it seems to be providing some comfort to Tory.
Tory will be very busy this coming week. Besides participating in her various therapies and having radiation each day, she will be receiving another respiratory treatment on Tuesday and having her 6 week follow-up evaluation with Dr. Thomas (Neuro-Surgeon) on Friday.
We have again returned home for the weekend and plan on returning to Fargo on Monday morning. On our drive home yesterday Tory stayed awake most of the way and enjoyed looking at and commenting about various things along the way. She also used that time to eat a double cheeseburger and french fries from burger king that she had requested. Since the weather forecast doesn't sound so good, we will probably remain at the house while at home. Some of the neighbor's were already over to see Tory and visit with us last night. We all enjoyed our visits and consider ourselves very fortunate to have such good neighbors.
Thank you again to everyone for your thoughts and support. As much as we all hate to admit it, we need this very much. Tory is now checking her web page 3 or 4 times a week and really gets alot of strenth from all the messages that are left for her.
Love Troy and Family.
Tuesday, March 23, 2004 7:03 PM CST
Good Evening:
Tory had another very good weekend at home. She had many more visitors this last trip, than she did the weekend before. She was very excited to see everyone and had a lot of fun doing so. We were also able to bring our two golden retrievers (Max & Bear) home for a visit. All of us enjoyed seeing and playing with them very much. Our golden lab (Sony) stayed at the Martin Farm and did not come home, but I did see him on Sunday and he also looked very, very good. It was clear that all of the dogs were being treated very well. We would really like to thank the Martin's again for allowing our pets to stay with them during our absence.
This past weekend Tory showed more interest in using the computer and read several of the messages that had been left for her on this web page. She was amazed at how many people were thinking about her.
Once again our return to Fargo on Monday morning was uneventful. Tory had a very busy morning and then was ready to rest when we returned to the RMH.
Today Tory had her lab tests and then met with Dr. Kabrinsky her medical oncologist. They get along very well. She told him exactly how she had been feeling and what was or wasn't bothering her. Overall, we were informed that Tory is doing very very good so far. Her blood work continues to look good and her immune system is staying strong. There are no immediate concerns at the present time. They also discussed her hair loss and Tory seems to accept the fact that she may only loose some of it or might possibly loose all of it. It is still a little early to say exactly what will happen. So far she has mainly lost the hair on the back of her neck/head around her incision where the radiation is being directed.
Tory will begin using the computer as part of her speech therapy tomorrow and might be sending a message or two from time to time. She will also be viewing this web page as well and reading the messages out loud as part of her therapy.
Tory appetite is continuing to improve and she is now eating a little better each day. She really ate well today at lunch time and again at supper. This is great news and will help Tory in many many ways. We learned this morning that she only lost 1 pound during the last week. It is our hope that we can break even or even gain a little during the next week.
If everything continues to go well during the week we will again return to Grand Forks this weekend. We should know for sure by Thursday night.
I guess that's pretty much it for now. Thank you to everyone for your continued thoughts and support. We truly appreciate everything everyone has done to assist us. Tory continues to gain much strength, determination and courage from everyones generosity and prayers. Thank you all again so very much.
Love Troy and Family!
Saturday, March 20, 2004 5:16 AM CST
Good Morning:
Overall, Tory had what we would have to consider is her best week since her cancer was first discovered. For the most part she has been very silly, happy and upbeat throughout the week. She did very well in all of her therapy sessions and continues to make a little more improvement each day. She also developed an interest in eating this week and has finally began to eat larger amounts of food at more frequent intervals. This is very important and should really help her stabilize her weight. We did learn on Thursday that she had lost another 2 pounds, but we are hopeful that she will at least gain that back in the upcoming week now that she is eating more regularly.
Tory's eye examination went pretty good. She is still experiencing double vision. It remains unknown if this will correct itself with time or not. For the time being Dr. Nelson is going to fit her glasses with some prism overlays that should help realign her vision when her glasses are on. This is intended to begin restrengthening her eye muscles, and if it works will allow her to remove her patch when she has her glasses on.
Tory's meeting with Dr. Bier (Radiation Oncologist) went pretty good. At the present time she appears to be withstanding the radiation treatment pretty good. She has now completed 13 days and has 20 days of the radiation treatment remaining. On Thursday afternoon we finally began to see that she is beginning to loose a little hair around the incision area on the back of her neck. This is the area where the radiation is being directed, and hair loss in this area was anticipated. It remains unknown if she will loose any of her hair on the other areas of her head or not.
Tory's speech is continuing to improve to some extent each day. Although her rate of speech is still fairly slow, the pronounciation of her words is improving. It can still be a challenge to understand what she is saying when she starts acting silly or gets excited.
Tory's balance and coordination is also slowly improving. She is still very weak from everything she has been through and her weight loss. She is beginning to try and do more things for herself each day, but we still have a long way to go. She still needs our help when she walks and I don't anticipate this will change anytime soon, although in her mind she "is fine" and could do it no problem if she was allowed to. She doesn't always remember that she simply cannot be allowed to fall and hit her head or even injure any other part of her body at the present time.
We have really been trying to take advantage of each good day Tory has had recently and enjoy them as much as we can. She still has a very long road ahead of her and we must remember that her condition could change at any time.
For the moment it appears that we have finally developed a schedule that works for Tory and provides her with a balance of activity and rest. It doesn't take long for her to get wore out when she is up and going. For the time being it also appears that Teresa has got her medication schedule fine tuned and the various medications are not causing any major nausea. This has allowed Tory to sleep very good each night and ensure she receives adequate rest.
We have returned to our home in Grand Forks again this weekend. We will remain here until Monday morning and then return to Fargo. On the way home yesterday we stopped by Ideal Aerosmith (Teresa's Employer) and visited with everyone there for a little bit. It was a very touching and at some points emotional visit. Tory was very excited to see everyone and really enjoyed being able to share some of her thoughts with everyone.
We should be at the house most of the weekend. I really don't think we have any special plans. We will stay busy with Tory's activities and needs as well as trying to catch up on other needs around the house.
Thank you to everyone for all of your continued assistance and prayers. Tory remains very strong, courageous and determined. This is the result of your support. Please continue to think of Tory when you can and be assured that she thinks of all of you often.
Love Troy and Family
Wednesday, March 17, 2004 9:51 AM CST
Good Morning:
Tory had a pretty good weekend at home. It was apparent that she really enjoyed being around her own stuff and bed. Although we still had a few ups and downs, overall our return home was a great success. We also began to see some signs that Tory's interest and appetite in food was starting to improve.
We returned to Fargo on Monday morning and our drive was uneventful. Tory handled the drive to and from home without any problem which was a big relief. Tory had a very busy Monday with all of her therapy sessions and then her radiation treatment. She was pretty wore out when we got to the RMH that afternoon and was ready to rest.
Tory has really been feeling much better this week and has been a blast to be around. Teresa and I have really enjoyed these moments and we have all had alot of fun with each other. It has been a very long time since we have been able to share moments like this with each other.
One of the big highlights this week was being visited at the RMH last night by "Thunder". Thunder is a theraputic pet with the FM Obidience program. He is a 140 pound New Foundland. He was brought over by his handler and spent about 35 minutes visiting. His visit was great and we all had a lot of fun playing and visiting with Thunder. Tory has been informed that they will be making arrangements for Thunder and some of the other dogs in the program to visit her more often. She was very excited about this.
We reviewed Tory's lab work this morning and were informed that so far all of her lab results indicate that she is remaining very strong during the cancer treatment. This is very good news. Everyone at the hospital and cancer center continue to be amazed at how strong and courageous she is and how well she is recovering from her surgeries. Teresa and I have also been told on many occassions that our direct involvement in Tory's recovery and cancer treatment has made a big difference as well. It is clear every where we go that we are a very tight family unit and there is so much love shared between us all.
Tory has a very busy day today and will have another eye examination this afternoon. Although her vision is improving a little more each week, Dr. Nelson is watching it closely and is thinking about doing some things with her glasses that might help eliminate some of her double vision for the time being.
Tory meets with Dr. Bier after her radiation treatment tomorrow and we will discuss how that aspect of the cancer treatment is going so far. Tory will have a busy morning on Friday and after she is completed we will again try to return home to Grand Forks for the weekend.
I know that Tory would really like to have some visitors this weekend if anyone would like to stop by. Last weekend she was only visited by one of her classmates and one of our neighbors although other people said they were coming by and did not. Our only major concern regarding visitors is that Tory cannot afford to get sick at the present time, since her immune system is working quite hard to fight her cancer. Other than that we are pretty flexible.
Thank you to everyone for everything that has and continues to be done to assist us. The support, thoughts and prayers continue to give us all the strength we need to make it through this and for Teresa and I to remain by Tory's side.
Love Troy and family.
Saturday, March 13, 2004 6:59 AM CST
Good Morning:
Just a quick note to say I added some new photos of Tory's activities yesterday. I think I finally figured out a way to scale them down a little, but the process made them a bit grainy. In their original format they were teriffic and turned out very good.
Once again Tory slept very good last night and she and Teresa are still asleep. They both appear much more relaxed and comfortable now that they are home. They both deserve a day or two of being "lazy butts" and laying around and relaxing.
If you have not seen it yet I also provided an update last night. It will provide you with more information about how our day went yesterday.
Hope everyone has a great day. We plan on doing so! Thank you all for everything you have done for us all. This has helped all of us get this far and will continue to help us travel down the long road that remains ahead of us!
Love Troy and Family.
Friday, March 12, 2004 10:47 PM CST
Good Evening:
Tory had a very busy day and for the most part she did very well. She had a pretty good appetite throughout the day and ate more than she has at any other time recently. In addition she didn't get sick until late this evening when she was taking her chemo medicines.
Tory had a very exciting and exhausting morning in her therapy sessions. During speech, she sent her first email since her most recent surgeries. The email was a short note to her school principal reminding all the students at her school that she missed them. During her occupational therapy she and a new girl friend Jessie Wilson, made a type of desert pastry. They looked very good when they were done. Jessie had the same exact surgery that Tory had one week before Tory. Tory worked out pretty hard in PT today and was wore out when she was done. She finished her day with her radiation treatment which for the most part was uneventful.
Once she was done with radiation we got in the car and hit the road in order to return home as a family for the first time in many, many weeks. All of us were very excited to leave Fargo. Tory slept during most of the drive. Since we got to Grand Forks earlier than we expected, Teresa and I offered Tory the chance to stop at her school to see her classmates and teachers before we went to the house. Tory accepted our offer and was very excited about that idea.
After arriving at the school, Tory found her class and was allowed the opportunity to visit with them. She was also able to see many of the other students and teachers that heard she was at the school and came to the science classroom to see her. I know that Tory really enjoyed being able to visit with everyone and it appeared that everyone that had the opportunity to stop by and see her was very excited at well. We then returned home and Tory was greeted immediately by her cats. Since the dogs are at the Martin's Farm she hasn't had the opportunity to see them yet.
After unloading the car, Teresa went to get groceries and Tory took a much needed nap. She woke up when our neighbor's Howard and Joel stopped by to check on us and visit for a while.
Tory spent some time on the computer this evening and really enjoyed being home. She plans to get back on it tomorrow and also try to play some of her Simms Game that she enjoys very much. We plan on staying around the house throughout the weekend and will probably return to Fargo on Monday morning.
Anyone that would like to visit with Tory this weekend is welcome to make arrangements to stop by or call.
I think thats it for now. We thank all of you for your thoughts and support. Tory is a very strong and determined little girl who is continuing to fight a very courageous battle. Her strength, determination and courage are the result of everything all of you have done to help us through this difficult time.
Good Night. Love Troy, Teresa and Tory!
Thursday, March 11, 2004 8:38 PM CST
Good Evening:
Tory's recovery has had its ups and downs so far during the week. Although we have pretty much got control of her evening medication which has allowed to take her chemo medicine without getting sick and to sleep through the night, she has began having nauscious spells during the daytime and has not been able to keep much if any of what little food she is eating down. We learned on Tuesday that she has lost another 3 pounds during the last week.
Tory continues to be strong and determined and continues to make some progress each day. We revised her therapy schedules this week and she only has physical, speech and occupational therapy on Mon, Wed and Fri. This was necessary since she needed extra rest to remain strong for the cancer treatments.
Tory thinks of all her friends, classmates and so forth each day and misses everyone very much. She also misses her pets very, very, very much.
We are all getting pretty tired of being in Fargo eventhough we know we have no other choice. Since the weather looks like it will cooperate, we plan on returning to Grand Forks this weekend to try to take care of a variety of things we need to do there. We hope to arrive home in G.F., sometime tomorrow afternoon. We have not decided if we will return to Fargo on Sunday or Monday morning. That depends on what Tory's treatment schedule for Monday ends up looking like.
Tory would sure like to see anyone that might want to stop by to see her on Saturday or Sunday.
Tory continues to gain additional strength from all the cards and emails she recieves daily. She cannot believe that so many people from so many places are thinking about her and praying for her. Thanks again to everyone for your thoughts, prayers and support for Tory and our family.
Love Troy
Tuesday, March 9, 2004 11:25 AM CST
Good Morning:
I am not having a good day and it seems to be getting worse as each minute passes!
Tory is doing much better than I am! It appears that our efforts to get her medication schedule figured out are working. She has made it through all of her nights since my last update without any major difficulties and has slept well. This sure helps her prepare for her busy schedule each day. Her condition remains good but very fragile.
I must go. Thank you to everyone for your support and prayers. Tory continues to need your thoughts and prayers when you are able to provide them.
Love Troy
Saturday, March 6, 2004 8:14 AM CST
Good Morning:
As most of you know, Tory began her chemo and radiation treatments on Wednesday. Her radiation treatments have went well so far. Her chemo treatments on the other hand have been a little rough. On the first night Tory woke up about 2 hours after taking the medicine and began throwing up. This started at about 10:45 p.m. and lasted until about 4:30 or 5:00 a.m. This was not a pleasant experience for any of us and Tory was very tired when it finally ended. As a result, I cancelled all of her other therapy sessions on Thursday so she could rest. She slept until almost noon when she had to get up so we could get ready to return to the cancer center for her next radiation session. After speaking with the Oncology doctor's and nurses, Teresa and I made some changes to Tory's medication schedule on Thursday night and she handled the chemo medicine much better. She woke up once about 2:00 a.m. and had a brief episode of vomitting and then quickly went back to sleep about 2:20 a.m. and slept pretty good until she had to get up at 7:30 a.m. to prepare for her Therapy sessions.
Tory seemed to feel a little better and was fully aware that yesterday was her 11th birthday. She opened a gift or two before breakfast and viewed all the decorations and her cake that mom had placed out during the night.
Tory had a very long day yesterday and participated in all of her speech, physical and occupational therapy sessions. She also had her radiation treatment at about 2:00 p.m. Everyone remembered it was her birthday and she received some gifts and birthday wishes from all of the different departments.
Tory got to open the remainder of her gifts when we returned home to the RMH. She had a lot of fun opening her gifts and was full of smiles and laughs. After she was done she layed down for a nap with Grandma Shirley. She didn't really have any appetite at supper time and hasn't had since she began taking the chemo medicine.
After taking her chemo medicine last night she slept for about 4 hours and then she once again began throwing up. This time it was only for about 2 hours and wasn't nearly as frequent or bad as the first night taking the medicine.
Teresa and I will again review her evening medication ritual and determine if anything can be modified slightly to reduce or eliminate Tory's nausea after she takes her chemo medicine. This whole medication process begins about 3 hours before she goes to bed and requires that she take a variety of different pills before she finishes the sequence with the (3) chemo pills.
Although the nausea episodes have been pretty hard on Tory so far, she does not complain. She continues to do her best. She remains very strong and courageous. Teresa and Tory are still resting this morning and will be allowed to do so until they feel like getting up.
We have decided that we will not attempt to return to Grand Forks this weekend, since Tory is pretty wore out and the weather forecast doesn't sound real good. If Tory is feeling better next weekend and the weather cooperates we will try to come home then, but that will be dependent on many things that are presently unknown.
Thank you all for your thoughts, support and prayers. Please continue to think of Tory when you can.
Love Troy and Family.
Wednesday, March 3, 2004 4:43 PM CST
Good Afternoon:
Tory's post surgery condition has continued to improve since my last entry. Her appetite has continued to increase each day and she has not got sick since Saturday evening. She is also beginning to get her spunk and wit back.
She has responded very well to her therapy sessions at the hospital so far this week and is a little stronger and energetic each day.
Her cancer treatment began today. She underwent her first radiation treatment this afternoon. It was our understanding that it went very well. We learned today that the Tory will have to receive the radiation treatment for the next 7 weeks, instead of the 6 weeks we were originally expecting. We are to meet with Dr. Beer tomorrow and receive more information about the specifics of Tory's radiation treatment. Tory will receive her first dose of the chemo therapy drugs tonight at bedtime. During the first phase of her treatment she will be taking the chemo drugs for the next 42 days. We are hopeful that Tory will be able to ingest the (3) capsules without any problems.
Tory will continue with all of her various therapies through the end of the week. She will not receive the radiation therapy on the weekends, but will have to take the chemo drug every day.
Tory was visited by her sister yesterday afternoon and was very excited to see Tara. She was visited briefly at the hospital today by her classmate Neil Iverson and his father. They found us in the hospital cafeteria and Tory let out a loud scream when she saw Neil enter the dining area.
We have not yet decided what we will be doing for Tory's birthday this Friday. Much of this depends on how she feels over the next two days. Grandma Shirley will be departing and returning to her home in Oregon on Monday morning.
Thanks to everyone for your thoughts and prayers. Tory and the rest of us are overwhelmed by everything you have all done to assist us during our time of need.
Love Troy and Family!
Sunday, February 29, 2004 9:50 AM CST
Good Morning:
Overall Tory had another good day yesterday and is beginning to adjust to life outside the hospital. She was visited last night by the Martin's (Steve, Barb, Becky and Joey). We all had fun talking about a variety of things. Tory got caught up on everything that was happening at school. We also got updated on how our dogs (Bear, Max and Sony) were doing since they are staying at the Martin's farm while we are away from Grand Forks.
Unfortunately as we were preparing to eat a wonderful turkey dinner, Tory became sick to her stomach again and her evening was cut short. After her tummy settled down, she took her evening medications and then called it a night. Once again she slept very well and was full of smiles and laughter this morning when she woke up. She is already starting to ask when we can go to the Olive Garden or Royal Fork restaraunts to eat. I don't think this will happen anytime in the near future, but it is good to hear her asking to do things out in a more public environment.
For the most part we all plan on having a lazy and restful day. We will resume our very busy schedule at the hospital tomorrow.
I have updated our present address in Fargo on the main page and corrected the phone number to the RMH. I apologize for entering the wrong phone number previously. The phone in our room has voice mail so messages can be left if we are not by it. There might also be times when the phone is turned off while Tory is resting.
Thanks to everyone for everything you have done to help us so far. Please remember that Tory's recovery will be a marathon and not a sprint. We have now made it through the surgical portion and are preparing for the next part of her journey towards recovery. The cancer treatment will be very aggressive and demanding. Due to this Tory will most likely continue to have good and bad days.
Love Troy and family.
Saturday, February 28, 2004 5:27 PM CST
Good Afternoon:
Tory was in fact discharged from the hospital yesterday. We arrived at the RMH at about 4:15 p.m. We were all very excited to leave the hospital. When we got to the RMH we were welcomed by many of the staff members and Grandma Shirley. Tory was very excited to meet and speak with everyone for a little bit. Grandma had also place many of the decorations that were made by her classmates for her benefit out on the dining room table for her to see. This was the first time she had got to see them and like Teresa and I was overwhelmed by all the thought and love that was put into each one as it was made.
Tory took a little nap and then got up and returned to the dining area to have a family meal. Much to our surprise, she ate quite well. She had some roast beef, potatoes, green beans and cucumbers. She loved the green beans so much that she had seconds and I believe possibly even thirds. After supper we all went into the living room and watched a movie together after Tory took her evening medications. It was a huge relief to have her out of the hospital.
Tory slept well last night and got up this morning to take her medications at about 8:00 a.m. After resting a little longer, she ate a breakfast of green beans and cucumbers? (I thought that was a little strange also, but that is what she wanted). She was up most of the morning and had some of a McDonald's quarter pounder and french fries for lunch. Her appetite is beginning to return and we are very excited about that. The Haupt's from Grand Forks visited us this afternoon and Tory watched another movie. She is now in the process of taking a little nap (over 2 hours so far).
As you can tell I think being out of the hospital has helped us all. Words really can't say how wonderful it was to be out of the hospital and for all of us to be able to snuggle, visit and sleep together as a family. We all plan on trying to rest and relax throughout the weekend since we know next week will be very busy.
Thank you all for everything you have done for all of us. Please continue to think of Tory when you are able to do so.
Love Troy
Friday, February 27, 2004 12:22 AM CST
Good Afternoon:
It is official, Tory is being released from the hospital this afternoon after she completes her afternoon therapy sessions. Due to this we all have been very very busy today preparing for her discharge and transfer to the Ronald McDonald House in Fargo. I will provide the phone number and address again this afternoon after we get there and get Tory settled in. I don't believe she will be discharged until sometime after 4:00 p.m.
We switched rooms early this morning so that has been completed. This will pretty much allow Tory to remain on the main floor inside the house when we are there. However, if she resumes her interest to use and view the computer she will have to use the stairs since it is located in the basement.
Tory had another good night and is very excited about getting out of the hospital. Her doctors have been around to see her this morning and continue to be pleased with her daily progress. There are still some items of concern, but at the moment they will be monitored by Teresa and I. I think we all plan on having a quiet evening tonight and resting which is something we have not done as a family in a very long time. We will also be focusing on getting Tory adjusted to her new environment throughout the weekend.
Dr. Kobinski (Medical Oncologist) informed us this morning that Tory's cancer treatment will begin next Tuesday. Once again the first phase will consist of 6 straight weeks of radiation and chemo therapy. Tory will again have a full day of speech, physical and occupational therapy on Monday and continue with those until deemed otherwise after her cancer treatment begins.
I have a feeling I forgot something, but as usual can't recall what it might be. I guess I will have to revisit that missing thought at a later time.
Thanks to everyone for your continuing support. Tory's discharge from the hospital today is the direct result of your efforts!
Love Troy and Family.
Thursday, February 26, 2004 7:11 PM CST
Good Evening:
Overall, Tory had an excellent day today. She slept very very good last night and woke up full of giggles and smiles.
She was seen by Dr. Regan (Neurologist) this morning and later by Dr. Thomas (Neurosurgeon). Once again they were pretty pleased with her recovery so far, however, they really don't have an explanation for why Tory continues to get sick from time to time. Everyone hopes it is only a short term problem and that as she continues to recover from her various surgeries it will go away. She did get sick again this morning after her visits with the doctors and after completing her speech and physical therapy sessions.
Tory ate some baked potato and chocolate milk for lunch. She wasn't interested in much else although there were many other things available to her.
This afternoon she again participated in physical, speech and occupational therapy. She got many favorable comments about how well she is responding and how well she continues to improve in all areas.
Dr. Kobinski (Medical Oncologist) stopped by and visited with us this afternoon. If it was up to him, Tory's cancer treatment would have started today. However, this was not possible since her treatment plan is still being revaluated by Dr. Beer (Radiation Oncologist) and his staff. Dr. Kobinski is optomistic that Tory's radiation and chemotherapy will begin on Monday. She will also be contining her other therapy sessions as much as she can tolerate for the time being.
The doctor's continue to feel that they will most likely release Tory from the hospital tomorrow (Friday). We will then move her to the Ronald McDonald House where we will be staying at least until her radiation treatment is completed (another 6 weeks).
Tory ate a very good supper this evening. We have to believe that her appetite is starting to return. She is also looking forward to having her first real bath since she had her surgeries.
I think that pretty much covers her activities and progress for today. She is now aware that she is probably going to be released from the hospital and this has brought a new twinkle to her eyes. She is finally starting to act like she is ready to get out and see something new. Teresa and I feel that she needs this very much and it will aide her recovery a great deal.
Thanks again to everyone for everything you have or have offered to do to assist us. All of your kindness is so very much appreciated. Please continue to think of Tory when you can, since it is your thoughts and prayers that continue to give her the strength and will to recover.
Love Troy and Family!
Thursday, February 26, 2004 10:36 AM CST
Good Morning:
Tory had another very busy day yesterday. In addition to her daily therapy sessions, she had her radiation resimulation first thing in the morning. That went very well and she was refitted with a new mask that she must wear when she is receiving the radiation treatment for her cancer. This helps ensure that her head does not move during the treatment process.
Her appetite was so so during the day, but she did at least show some interest in discussing things that might appeal to her. Unfortunately, she did get sick again last night following her supper.
Overall, Tory's condition continues to improve each day and she is becoming more active and talkative. She had a very thorough eye exam yesterday to try to explain why she is experiencing double vision. It appears that one of the six muscles in her left eye has been strained, and only time will tell if this will correct itself. Otherwise all aspects of her vision are very good, and there was no evidence that he optic nerves were injured.
The other primary concern is Tory's lack of appetite and the nausea episodes. A specific cause for this has still not been determined. We learned yesterday that Tory has continued to loose weight since she moved to her present room from the ICU. The most likely cause of this problem is the surgical procedure and its effect on her brain. Once again the doctor's are hopeful that this will correct itself with time as her surgical recovery continues.
We met with Dr. Klava yesterday and discussed Tory's recovery. He felt that she should remain in the hospital until the end of the week (friday) and if she continued to show improvement she might be able to be released at that time. Dr. Thomas echoed the same thoughts this morning. Tory is now showing an interest in getting out of the hospital and relocating to the Ronald McDonald House. If her condition continues to improve, this will probably happen sometime late tomorrow.
Tory's cancer treatment plan is being revised at this time now that her resimulation has been completed. We anticipate she might begin her chemo and radiation sometime next week, but that is still not firm. In the meantime, she will continue with physical, occupational and speech therapy each day as an out patient. Her daily schedule will obviously remain very, very busy.
The Ronald McDonald House is anxiously awaiting Tory's release from the hospital. They continue to try and facilitate all of our needs for Tory. One of the other long term residents who is on the main floor has agreed to switch rooms with us so that Tory will not have to try and climb up and down the stairs many times each day. It appears we will all be trying to move things around between the two rooms tomorrow evening sometime.
Tory slept very good last night and was full of smiles and laughter this morning. We had several little conversations yesterday to remind her of how proud we are of her and how strong and courageous she has been and continues to be. Her day today will again be very busy.
Thanks to everyone for your love, support, thoughts and prayers. Tory has and will continue to gain much strength from everything all of you have done for her and the rest of our family.
Love Troy
Tuesday, February 24, 2004 9:08 AM CST
Good Morning:
Tory had her best and most active day yesterday since her surgery. Some of her accomplishments included climbing up and down 3 flights of stairs (with assistance), having her C-Scan, going down to the basement and being introduced to Easy Street for the first time. Easy street is a mock city that provides each patient with a variety of things they experience in their daily activities. Some of the things she did was, enter and exit a vehicle, walk thru a fast food restraunt, walk thru a grocery store, cross a street and walk up over a curb, exit the front door of a house and descend the porch steps and enter and be seated in an aircraft and then exit it.
When Tory finally returned to her room she was wore out, but continued to be happy and full of laughter and smiles. She took a nap before supper. The meal she was served didn't appeal to her, so I prepared some spaghetti-0's and fruit for her which she ate without any assistance.
Following supper she had a black lab from the Fargo Moorhead Pet Therapy Center visit her at the hospital. The dogs name was Mysti. Mysti was wearing a yellow scarf and a red cowboy hat. As you might expect Tory was very excited to visit with and play with Mysti. After Mysti completed her visit with other patients in the hospital she returned to say goodbye to Tory before departing.
Tory finally went to sleep about 9:30 p.m. and slept all through the night until about 7:15 a.m. this morning. She ate a little breakfast, but her appetite was not quite as good as yesterday.
Dr. Thomas came to see us this morning and discussed Tory's C-Scan from yesterday. He stated that everything in and around the surgical site appeared to be fine and assured us that Tory's shunt was working properly. He again felt that the surgical aspect of Tory's recovery was doing very good.
We met with Dr. Klava? who is Tory's neurologist yesterday afternoon and discussed her recovery plan briefly. He felt Tory continued to make very good progress but probably needed a little more time with the various therapists before she could be released from the hospital. We were informed that the entire recovery and rehab team would be discussing Tory's progress and short term needs today and attempt to decide when she might be released.
Tory's activities today will include another full day of speech, physical and occupational therapy, plus her standard visits by her nurses and doctors. Her radiation therapy preparations are still planned for tomorrow.
Thanks to everyone for your support, thoughts, prayers and wonderful notes and calls. This has helped us all more than words can say.
Love Troy
Monday, February 23, 2004 10:37 AM CST
Good Morning:
Tory's recovery continues to have its ups and downs. She had a pretty good morning and afternoon yesterday. She was visited by the Iverson's in the early afternoon and then by the Haupt's about an hour later. She seemed to enjoy her visitors, but it was also visible that she got a little tired. After her guests were gone she was asked by the nurse to get up and move around. Throughout the entire day she was reluctant to get out of bed for any reason except to use the bathroom.
At about 5:00 Tory was asked by the nurse to honor her promise to get up for a walk. She became very upset and although she did take a short walk she did not like doing so and continued to be upset the entire time. Once she returned to her room she returned to her bed and really didn't want to be bothered by anyone. With reluctance she ate a little of her supper. A few hours later she experienced another episode of vomitting which was very disturbing. She was then very exhausted and eventually fell asleep and slept pretty good throughout the night.
Tory's day today has been much better so far. She woke with a big smile and laughter. She had a real appetite for the first time since her surgery and ate about half of her scrambled eggs and blue berry muffin. She also asked for fruit and ate some cantelope. She has already had her speech session and enjoyed working with her therapist. After that she willingly got up and walked down to the activity room with her walker. She spent some time watching the fish in the fish tank and then sat down and we played to games of Guess Who. As you might imagine she won both of them. She then returned to her room and is resting up for her occupational and physical therapy session later this morning and afternoon.
Tory was seen by Dr. Thomas after returning to her room. He continues to feel that the surgical procedure went well and is healing correctly. Some of our recent experiences are known deficts or side effects from the surgery and should continue to improve with time. As a precaution, he did request that Tory have another C-Scan sometime today. We don't know when that will be for sure, and once again her busy schedule will have to be revised.
We learned this morning that her radiation therapy preparations have been rescheduled for Wednesday. The determination regarding Tory's in and out patient rehab schedule and release from the hospital is still pending.
Tory has still not had any desire to look at the computer and see all the wonderful notes that have been left for her. We continue to tell her about them and she is amazed at how many people from so many different places are thinking about her. Thank you to everyone for your thoughts and prayers.
Love Troy
Sunday, February 22, 2004 9:00 AM CST
Good Morning:
Tory had a much better day yesterday than the day before. She showed some interest in eating and did not get sick. She had her first bath in the morning and sat in her chair for two short periods. It did not take much to wear her out and she had a very long nap around mid day. Her medicines were changed to chewable forms and she was able to take them without getting sick. This was very important and she was feeling much better by evening.
In the evening we played a game called Guess Who? and had a lot of fun. This really helps her with her coordination, speech and vision. Tory beat me all three games she and I played. She beat Teresa once out of the two time they played. Tory seemed to really enjoy it and we all got to share a lot of laughs and smiles.
Tory's nurse made her a special milk shake with extra nutrients in it, which she ended up liking very much once she decided to try it. She has already asked the nurse to make her another one today. After her supper which she ate a little of, Tory was pretty tired and it didn't take long for her to fall asleep.
Her temperature was fairly steady throughout the day and rose a little before bedtime. She made it thru the entire day without any pain medication or tylenol.
Grandma Shirley spent the night with Tory at the hospital. This was the first time Teresa and I left Tory's side since January 4th. Things went very well and Tory had a very good and restful night.
When we returned to the hospital this morning, Tory and Grandma Shirley were already preparing for breakfast and they were laughing and full of smiles.
Tory seemed willing to get up a little more today and is very excited about some of her friends from Grand Forks coming to see her. If everything continues to go well today, we will try to take her downstairs to the cafeteria in her wheel chair and have a root beer float or anything else that might appeal to her.
I think that's pretty much it for now. We hope to find out more about her future treatment and recovery plan sometime in the next few days. It is still not known when she will be released from the hospital. Once she is released from the hospital we will be faced with a variety of new challenges to ensure her needs are met so that she can continue her recovery.
Thank you to everyone for your thoughts, prayers and support!
Love Troy
Saturday, February 21, 2004 10:02 AM CST
Good Morning:
Since my update last night we have once again experienced a bit of a set back in Tory's recovery. She was able to get up and take a walk last night, but when she returned to her room she had a vomitting episode that was quite upesetting to her. She slept fairly well overnight although she vomitted again after using the bathroom and drinking some water. This morning she showed some interest in breakfast and ate a little toast and watermelon and drank some milk, however, that was followed by another vommiting episode when she took her medication.
Her surgeon Dr. Thomas has been in to see her this morning and will be checking on her again this afternoon. Tory will be getting a neck collar today to help support her neck when she is up, as the muscles around the surgical site continue to heal and regain their strength. We are going to try to get Tory up more frequently for shorter periods of time in hopes that this will begin to restore her confidence in sitting up, standing, walking and so forth. We will also be continuing to find something that will appeal to Tory's appetite so that she will begin to show an interest in eating.
In the event anyone would like to come visit Tory or any of the rest of us this weekend you are welcome to do so. We can tell that Tory needs to see some new and familiar faces. She has not shown any interest in looking at the computer yet, so she hasn't seen any of the wonderful messages on her email, or had a chance to look at this website yet. I can't say when she will decide she wants to do so.
Thank you to every one for your thoughts and prayers. Please continue to think of Tory whenever you can.
Love Troy and Family!
Friday, February 20, 2004 6:58 PM CST
Good Evening To Everyone:
First we would like to thank everyone that organized and/or participated in the wonderful benefit dinner for Tory at the Emerado School on Wednesday evening. It was very special! I apologize for not being able to get around to everyone and thank each and everyone of you personally for everything you have and continue to do to assist us.
Tory's condition has continued to improve slowly throughout the week. With each day that passes she gains a little more strength. The occupational, physical and speech therapists work with her at least once and sometimes twice a day. She is doing pretty good and everyone appears to be pretty pleased with her progress. She will continue to work with the various therapists in the weeks to come, even after she is eventually released from the hospital.
For the most part her fever is now under control and no longer a major concern. Her lung has also fully healed and she is breathing very good. She continues to do her breathing exercises and really shows off when she is asked to breathe for the doctors and nurses when they check on her. I think she is really trying ensure she is able to blow her own candles out on her birthday cake, since her 11th birthday will be on March 5th.
Tory had a very busy morning today which included getting the last of her stitches out. She was very strong and didn't complain although I know it was not pleasant. The only thing left is the small dressing on her right side where the chest tube was located. It sounds like that will be taken off sometime soon.
After her stitches were taken out we then went to the Roger Maris Cancer Center so she could begin preparing for her cancer treatment again. She was supposed to have another Cat Scan and have her little treatment mask refitted, however, that did not happen. When they attempted to position her head on the table it irritated the surgical area on the back of her head where her stitches had just been removed, and she was unable to complete the procedure and preparations. It was then decided that they would wait until next week to complete the c-scan and so forth. We then returned Tory to her room and she received some tylenol and rested for several hours. Most of her afternoon appointments were cancelled and it was apparent she needed the rest. All of her activities with the various therapists, doctors and nurses really wear her down.
This evening Tory spent time looking at all the wonderful valentines cards and letters she received from all of the faculty, students and her classmates at Emerado School. These meant a lot to her and she enjoyed them all very much. She has read them at least twice so far.
Tory opened her present from KISS on Wednesday morning and was very surprised. She has the photo's close to her bed and looks at them frequently. We listened to the KISS greatest hits CD last night and she then fell asleep while listening to the Rascall Flat CD. The word is out around the hospital that Tory has KISS memoribilia and lots of the doctors and nurses drop by to see it.
It looks like Tory will remain in the hospital through the weekend based upon todays developments. She might be released sometime next week but that will be determined at a later date. It appears that her cancer treatment is still on hold and might not start for yet another week. We should learn more about that this coming week.
We thank everyone for your continued support and prayers. Tory continues to be very couragous, determined and strong. She has a tough day every now and then but keeps on fighting. There is not any doubt in our minds that all your thoughts and prayers continue to give Tory the extra strenth and determination she needs at this time. Thank you all so very, very, very much!
Love Troy!
Tuesday, February 17, 2004 9:49 AM CST
Good Morning:
Tory had a very good and restful night. She was up walking a little before bedtime and also ate pretty good. She had some hotdog, baked potato, chicken noodle soup, milk, milk shake and ice cream for desert. This was her best effort yet at eating. She seems to be very happy about having her own room and regained her interest in watching a little television as well. Her temperature was normal this morning which was also a very good thing. She continues to do her breathing exercises and her lungs are getting stronger and stronger.
Tory had a bananna and juice for breakfast this morning. She wasn't too interested in anything else. She is once again taking all of her medicines by mouth. The nurses have even began mixing some of them in a little ice cream, and she likes that a lot. There were several nurses and therapists lined up outside her room this morning to begin assisting her with her recovery. It looked like they had a very long discussion and are preparing a schedule so everyone doesn't arrive at the same time.
Teresa and I are truly amazed at the resources that have been extended to assist Tory with her recovery this time around. There is definately a big difference between our first stay at the Altru Hospital and our present stay at the Merit Care Hospital. Since Merit Cares facility is actually a Children's hospital, they have many more pediatric specialist's available to address the needs each child has or will have in the future. We remain very comfortable with all of the medical staff members that have been involved with Tory's treatment so far.
Thank you to everyone for your thoughts, prayers and support. We could not have made it this far without them. I know I am beginning to sound like a broken record, but we have gained much strength from everything all of you have done and continue to do. Please continue to think of Tory when you can. She thinks of all of you quite often.
We have been informed that there is going to be a benefit dinner for Tory at the Emerado Elementary School on Wednesday (2/18/04) evening between 5:30-8:00 p.m. The school can be contacted at (701) 594-5125 for more information. I am not sure that any of us will be able to attend, since we are obviously still in Fargo. I would encourage those of you that can to do so, since it would be a wonderful opportunity for many of you to meet and even comfort each other.
Once again, we thank everyone for everything you have done to help us all.
Love Troy, Teresa, Grandma Shirley and TORY!
Monday, February 16, 2004 3:33 PM CST
Good Afternoon:
Tory's condition has continued to improve throughout the day and as a result she has been moved out of the Pediatric ICU and into her own room on the Pediatric floor. She will once again be in room #448. The phone number in the room will be (701)234-4448. We met with her neurologist earlier and he discussed her rehabilitation schedule, which will begin immediately and be fairly aggressive. Due to this he strongly recommended that she not have visitor's during the weekdays so she can concentrate on her recovery and receive adequate rest. She will of course be allowed visitor's on the weekends for short periods of time.
Tory was required to walk from the ICU to her new room and did so. Although she had assistance, she looked very good as she took her first real steps and walked a distance of about 200 feet. This did a lot to restore her confidence.
For the most part Tory will be resting the remainder of the day and tonight, and then begin her speech, occupational and physical therapy sessions tomorrow.
Sometime this week we hope to learn more about when her Chemo and Radiation Therapy treatments will begin. That has not yet been decided for sure. Much of that depends on how quickly she recovers from her recent surgery.
Thank you to everyone for your thoughts and prayers. All the doctors she has met are very amazed at what a strong and courageous little girl Tory is. Her strength and determination is the direct result of all your support and thoughts.
Love Troy
Monday, February 16, 2004 11:41 AM CST
Good Morning To All:
Although Tory continued to experience a few problems on Friday evening through Sunday morning, her condition improved considerably between Sunday afternoon and Monday morning. Her chest tube was removed Sunday afternoon and her lung appears to be functioning without any difficulty. Her respiration has also improved each day and she is no longer on oxygen. Her IV was disconnected on Sunday night and she has done fine without it so far. She finally began to become more interested in eating this morning and had several grapes and pieces of cantelope. She really loves her fruit.
Tory's other vital signs contine to improve daily. Most importantly her fever has continued to diminsh a little more each day at it was normal this morning. This can still increase from time to time, but it does not get way up there any more, which is very, very good news.
Tory will be seen by the speech and physical therapists today as well as by all her various doctors. Her stitches on the back of her head and neck are scheduled to be removed on Wednesday.
Based upon the above developments, we have been informed that Tory might be moved into her own room on the Pediatric floor sometime this afternoon. This is also very, very, very good news. She will then become much more involved with the various therapists for the remainder of the week. Mrs. Gilberton the hospital's teacher continues to check on her and is ready to begin helping her with her school work as soon as she is ready. It is not known at this time when Tory will be released from the hospital.
Once Tory's been moved and her room and contact information is known, I will provide an update. We would again like to thank everyone for their support and encouragement. We had several visitor's over the weekend and that really helped all of us very much. Tory hasn't got to see this web page yet, but she should be able to do so in the next few days. I know she will be very excited about all the little greetings that have been left for her.
We have also kept one other surprise for her until she is moved to her own room. The husband (Tom Haupt) on one of Teresa's co-workers (Lisa Haupt) somehow managed to obtain a signed photograph and card from the members of the rock band KISS which Tory has become very fond of. With considerable effort, he apparently was able to contact someone at Gene Simmons web site, who in turn obtained the band photo signed by Gene Simmons, and a card from the group signed by all members. It is unbelievable how quickly they responded to Tom's request. The above items were shipped overnight via Fed-Ex and Tom received them in less than a day. Tory will be very, very surprised when we give them to her and I know they will mean so much to her.
Thank you to everyone for everything you have and continue to do to help us. Your thoughts and prayers continue to give us all strength.
Love Troy.
Friday, February 13, 2004 5:59 PM CST
Good Afternoon: Tory's condition has began to improve more today than any other day so far. She spent a lot of time with the speech and physical therapists. She actually seemed to like the activities she was involved with during physical therapy. She got out of her bed for the first time today and sat in a chair for about 30 minutes. This was a big step and she did very well.
She has still not developed an appetite but has been given permission to try anything that might appeal to her. As a result, she has formally requested a baked potato? It is in the process of being delivered to her at this moment.
Tory's lung appears to be improving since the chest tube was reinserted last night. Her fever has been much less than in recent days and even dropped to normal on a few occassions today. It has not climbed as much as it had in past days during periods of increased activity. We are very grateful for this.
Dr. Thomas her surgeon is very pleased with her progress and continues to be amazed at how strong Tory is and how well she has done considering what she has been through in the last 5 weeks. It does not appear that she will experience any major problems from her surgery as far as any of her speech, coordination, motor skills and so forth go.
It appears Tory will remain in the Pediatric ICU for the time being until she is able to do more things for herself and begins to eat and use the bathroom on her own. This could be one or many days. That will be determined by her daily progress. Once she is released from the ICU she will be moved to the main pediatric floor, where she will remain for an indefinite period. Probably at least an additional week or so.
Tory has began to get e-mail letters delivered to her by the hospital mail room. She would like to thank all of her friends that have sent them to her. They mean a lot to her and she really enjoys reading them.
We would like to thank everyone for your support and prayers for our family during these difficult times. We are very grateful for everything everyone has done to aide and comfort us all. Please continue to think about Tory and pray for her recovery when time allows. We all get much strength from all of your support.
Love: Troy, Teresa, Grandma Shirley and TORY!
Friday, February 13, 2004 1:37 PM CST
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