It does not happen often but I have posted two days in a row. This is because last night I wanted to update quickly about the medical aspect of the situation. Today the focus is both the medical/logistical & emotional aspects of the situation that are grabbing at my head and my heart. Today we have been home most of the day and it is better to be home and yet it is still difficult to relax. Things have changed and are getting harder each day. So much has happened and is happening everyday. I don't mean to sound negative, but it is getting harder to find the positive lessons that come from this horrible disease and the impact that it has on our family. Robert seems lost and I fear that we will lose him. Everything is uncertain and I feel sadness for all of us.
Not all cancers are created equal. I do not mean to take away the devastation and fear that comes with anyone's cancer diagnosis and I wish that no one would ever have to be given the diagnosis. I can only speak from our experience and tell you that brain cancer is a brutal and unforgiving cancer that takes away many abilities of the patient and the family. It is aggressive and relentless in its power to grow and spread rapidly. The comfort of learning that it rarely metastasizes is now over-ridden by the first hand discovery that brain cancer does interfere with patients functioning and independence. If I have anger - I will direct it at the cancers that are fighting against Robert's body.
We will have to continue to work to find another 'new normal' and I know that it is critical in finding peace with the circumstances. Please pray for all of us as we continue to find the strength to fight, thrive, and find peace.
Friday, May 29, 2009
Thursday, May 28, 2009
May 28th
This week was more then difficult. Robert had a seizure on Monday and it was an experience that I wish no one would ever have to witness. I can not speak of it to much as it is to raw and I am overwhelmed by emotions when thinking of the moment. We were given information that Robert was hemorrhaging in the brain and it was a devastating complication. We were distraught thinking that we were losing Robert and I can not explain the fear related to this report. After being air lifted to Hopkins we were told that he most likely had not bleed and the MRI done on the following day confirmed this to be true. We will take the bits of really good news and hold on to them as we fight through the most challenging moments. Robert spent one nite in the intensive care unit and Tuesday night on the recovery floor. We were discharged last night and returned today for three appointments including radiation to the chest and a ritukan drip to treat the lymphoma.
We still have so many unanswered question and are trying to push forward. Thanks to everyone for the good wishes.
We still have so many unanswered question and are trying to push forward. Thanks to everyone for the good wishes.
Thursday, May 21, 2009
May 21st
We just got home from the hospital were Robert got his second round of Ritukan to treat the lymphoma. It went well and he was able to maintain a scheduled increase of the medication over time without any reaction. The IV drip took about three hours and we were away from home for only five hours total. This was much better then last weeks session which lasted about 6 1/2 hours. Having to go the the chemo treatment area of the hospital adds a new dynamic to the medical experience.
We met with the neuro-oncologist on Monday and the conversation was extensive and involved. So much was discussed and it is probably not necessary to provide every detail, but this is the information and proposed course of treatment. The MRI showed some improvement in the size of the brain tumors and this is remarkable since he has only received one dose of avastin and it is a drug that is primarily given to reduce inflammation - not shrink tumor. He bad news is that they have found a brain bleed. They think that is was caused from the brain biopsy and not the avastin. This is important because avastin can cause hemorrhaging even if not common. We will have a CAT scan next week to determine if it is growing and then determine if we can proceed with the avastin. Please pray for the 'go ahead' to get the avastin - it is important when receiving radiation. Hopefully avastin will be given next week and the radiation and oral chemo will be administered the week behind that.
We continue to be thankful for the many, many people who give of themselves to give to us.
We met with the neuro-oncologist on Monday and the conversation was extensive and involved. So much was discussed and it is probably not necessary to provide every detail, but this is the information and proposed course of treatment. The MRI showed some improvement in the size of the brain tumors and this is remarkable since he has only received one dose of avastin and it is a drug that is primarily given to reduce inflammation - not shrink tumor. He bad news is that they have found a brain bleed. They think that is was caused from the brain biopsy and not the avastin. This is important because avastin can cause hemorrhaging even if not common. We will have a CAT scan next week to determine if it is growing and then determine if we can proceed with the avastin. Please pray for the 'go ahead' to get the avastin - it is important when receiving radiation. Hopefully avastin will be given next week and the radiation and oral chemo will be administered the week behind that.
We continue to be thankful for the many, many people who give of themselves to give to us.
Sunday, May 17, 2009
May 17th
I have attempted to send Thank you letters to all of those who donated to the Race For Hope - DC and always fear that I am missing someone. I will post the Thank you letter here for anyone who may have been innocently skipped. Please know that we are thankful to everyone.
Robert, Tammy, Bryce, & Trey
It has been two weeks since we completed the Race For Hope- DC and it is still a strong inspirational and emotional moment that will stay with us always. Our team came together in the rain and we walked the 3.2 miles together. The experience gives us hope and an appreciation for the moment in time that we are able to be there together.
Your donations give us hope that better treatments and a cure will be developed through the research that will now happen. Your act of donating gives us emotional support that keeps our spirits lifted and keeps us better able to fight. Your constant good wishes give us a sense of peace that we are cared for. We are happy to have you in our lives. Thank you.
Robert, Tammy, Bryce, & Trey Kinberg
Robert, Tammy, Bryce, & Trey
It has been two weeks since we completed the Race For Hope- DC and it is still a strong inspirational and emotional moment that will stay with us always. Our team came together in the rain and we walked the 3.2 miles together. The experience gives us hope and an appreciation for the moment in time that we are able to be there together.
Your donations give us hope that better treatments and a cure will be developed through the research that will now happen. Your act of donating gives us emotional support that keeps our spirits lifted and keeps us better able to fight. Your constant good wishes give us a sense of peace that we are cared for. We are happy to have you in our lives. Thank you.
Robert, Tammy, Bryce, & Trey Kinberg
Saturday, May 16, 2009
May 16th
It seems as if it has been weeks since our last post because so much has happened this week. This was a busy week for us in terms of the number of appointments that we had at the hospital. Mon. we met with the hemo-oncologist, Tue. we met with the radiologist and had a radiology simulation to prepare for radiation treatments, Wed. we got the avastin -IV medication to treat the brain, & Thur. we got the ritukan -IV medication to treat the lymphoma. On Thur. we left the house at 7:30AM and returned at 6:00PM. The days have been long and emotionally draining. The conversations held with doctors this week took a different tone then even before. It is both comforting and heart wrenching to see the caring/sorrow in the doctors eyes as they have to relay the difficult diagnosis and etc. The compassion that they have for us is incredible and yet it is their actions, body language, and voices that tell us more then the actual words that they speak. They still never give up hope and that is all that we can ask for.
I have been struggling with my current inability to keep up with almost everything. Our new job is fighting these cancers and it leaves little time to talk to almost everyone other then our doctors. This would be difficult enough, but there have been so many people who have given so much to us and I desperately want to thank each and every person. I wish I could speak to all of you and want you to know how grateful we are for all of the thoughtful gifts and good wishes that we have received. This blog will have to serve as our primary source of communication for now. Please know that we carry the your spirits with us as we travel through this difficult journey. Thanks for the gifts cards, surprise visits, gift baskets, e-mails, cards, holy water, prayers, and good energy.
I have been struggling with my current inability to keep up with almost everything. Our new job is fighting these cancers and it leaves little time to talk to almost everyone other then our doctors. This would be difficult enough, but there have been so many people who have given so much to us and I desperately want to thank each and every person. I wish I could speak to all of you and want you to know how grateful we are for all of the thoughtful gifts and good wishes that we have received. This blog will have to serve as our primary source of communication for now. Please know that we carry the your spirits with us as we travel through this difficult journey. Thanks for the gifts cards, surprise visits, gift baskets, e-mails, cards, holy water, prayers, and good energy.
Monday, May 11, 2009
May 11th
This weekend brought a much needed break from the hospital appointments. We were distracted by the love that was showered upon us by family and friends. People came together in ways that impress upon us how much we are being cared for. We had people help us with cleaning, yard work, entertaining the boys, grocery shopping, and pampering my soul. We receive cards, letters, and gifts that are creative & supportive, and truly keep us encouraged.
Having family here gave us a chance to sit and be together. Having family and friends come to Bryce's baseball games and cheer him on - cheers me up as well. It is difficult when Robert can not come and I feel saddened that they are not playing together. It is different - Robert was the one who coached Bryce, taught him, and stood in the field with him. Now it is mommy on the sidelines and the cheerleaders who come to support him and encourage him to keep playing. Bryce is playing and we are all excited to see it.
We had neighbors pull together and come to our rescue. They did a complete landscaping overhaul and a garage makeover. We don't even recognize our yard and it is beautiful. The garage looks amazing and is extremely functional. The beauty lays not only in the yard/garage, but in the hearts of those that came to work so hard for us. There is no way to express the overwhelming emotion that comes from seeing so many people (adults and children) come together to help us. We feel surrounded by supported and our hearts are uplifted. The spirit that drove so many to work so hard for us gives us a sense of encouragement to keep moving forward in a positive light. Each and every time we go outside or in & out of the garage, we are reminded of the support that we are being given by friends who are selfless in their acts of kindness. Thank you.
I apologize for the change in tone that the next set of paragraphs will take. The above paragraphs were written on Mon and now it is Tue. Things change daily and our emotions are running along with the frequent reports and conversations that we have with the doctors. Here is what we know- Robert can not be give the typical treatment for lymphoma (intense chemotherapy) as it will interfere with the treatment of the brain. The goal is to keep the chest tumor stable. He will receive radiation and an IV medication once a week.
Treatment for the brain will have to be aggressive as the tumors ar widespread in the brain. We will most likely have radiation with chemo (temodar- what he took before) and avastin before-during-after radiation. Basically- radiation on the chest and brain simultaneously for 4-5 weeks, one IV medication every other week and two IV medication on the alternate weeks, and oral chemo pills. It is difficult to provide all of the details about possible treatment options. This is what is important-this is an aggressive and atypical form of treatment, but Robert is Brave and wants to Fight hard. This will be our toughest fight and we know that we are not alone in this fight. We are carried by friends and family that will be with us - to help us.
After yesterdays appointments and phone conversations with our oncologists and radiologist, I could not find the good news in the bad news. I was struggling to find the positive aspect. Late last night I did realize this - Our doctors have not given up hope and We have not given up hope.
We have love and no disease can take that away. Love is our diagnosis!
Having family here gave us a chance to sit and be together. Having family and friends come to Bryce's baseball games and cheer him on - cheers me up as well. It is difficult when Robert can not come and I feel saddened that they are not playing together. It is different - Robert was the one who coached Bryce, taught him, and stood in the field with him. Now it is mommy on the sidelines and the cheerleaders who come to support him and encourage him to keep playing. Bryce is playing and we are all excited to see it.
We had neighbors pull together and come to our rescue. They did a complete landscaping overhaul and a garage makeover. We don't even recognize our yard and it is beautiful. The garage looks amazing and is extremely functional. The beauty lays not only in the yard/garage, but in the hearts of those that came to work so hard for us. There is no way to express the overwhelming emotion that comes from seeing so many people (adults and children) come together to help us. We feel surrounded by supported and our hearts are uplifted. The spirit that drove so many to work so hard for us gives us a sense of encouragement to keep moving forward in a positive light. Each and every time we go outside or in & out of the garage, we are reminded of the support that we are being given by friends who are selfless in their acts of kindness. Thank you.
I apologize for the change in tone that the next set of paragraphs will take. The above paragraphs were written on Mon and now it is Tue. Things change daily and our emotions are running along with the frequent reports and conversations that we have with the doctors. Here is what we know- Robert can not be give the typical treatment for lymphoma (intense chemotherapy) as it will interfere with the treatment of the brain. The goal is to keep the chest tumor stable. He will receive radiation and an IV medication once a week.
Treatment for the brain will have to be aggressive as the tumors ar widespread in the brain. We will most likely have radiation with chemo (temodar- what he took before) and avastin before-during-after radiation. Basically- radiation on the chest and brain simultaneously for 4-5 weeks, one IV medication every other week and two IV medication on the alternate weeks, and oral chemo pills. It is difficult to provide all of the details about possible treatment options. This is what is important-this is an aggressive and atypical form of treatment, but Robert is Brave and wants to Fight hard. This will be our toughest fight and we know that we are not alone in this fight. We are carried by friends and family that will be with us - to help us.
After yesterdays appointments and phone conversations with our oncologists and radiologist, I could not find the good news in the bad news. I was struggling to find the positive aspect. Late last night I did realize this - Our doctors have not given up hope and We have not given up hope.
We have love and no disease can take that away. Love is our diagnosis!
Thursday, May 7, 2009
May 7th
News came today and yet the treatment plan is undetermined. Robert has been diagnosed with lymphoma in the chest. We will speak with the hematologist (oncologist) on Monday and learn more about the specifics of the type of lymphoma. We know that it is a form of non-Hodgkins lymphoma (B cell) and I will not even attempt to understand more then that until speaking with the doctor.
Other news came on Tuesday and it was confusing and surprising. The brain biopsy results came back negative for both lymphoma and giloblastoma. The doctors are again puzzled as it seems that each test presents us with confusing results and even more questions. Additional brain sample from the biopsy will be cut, stained, and resent for testing. This means another week of waiting for results - knowing that there is the possibility that they may not be able to determine the exact cause of Robert's cognitive disruption. We have to hope that they will be able to make a determination of what is in the brain and will be able to begin treatment immediately following. Please pray for the doctors to find answers so that we can begin treatment soon.
Please know that we are incredible humbled by the good wishes and heartfelt messages of support that keep coming. In spite of everything that is happening - there is a sense that we are being taken care of by so many and that is power.
Other news came on Tuesday and it was confusing and surprising. The brain biopsy results came back negative for both lymphoma and giloblastoma. The doctors are again puzzled as it seems that each test presents us with confusing results and even more questions. Additional brain sample from the biopsy will be cut, stained, and resent for testing. This means another week of waiting for results - knowing that there is the possibility that they may not be able to determine the exact cause of Robert's cognitive disruption. We have to hope that they will be able to make a determination of what is in the brain and will be able to begin treatment immediately following. Please pray for the doctors to find answers so that we can begin treatment soon.
Please know that we are incredible humbled by the good wishes and heartfelt messages of support that keep coming. In spite of everything that is happening - there is a sense that we are being taken care of by so many and that is power.
Monday, May 4, 2009
May 4th
I had to look up the date for the second time today. It is a reflection of the fact that time moves at a different rate and some times stands still in the Kinberg household. It is as if days pass and the date and time are not relevant because everything revolves around doctors appointments, test that are scheduled, test results that are pending and dealing with the physical & emotional struggle that comes with this type of medical situation. Living day by day has become a necessity for us. We have talked about it, but rarely do we ever really do it. As we wait for two pathology results to be determined - we must focus on the day that we are in. We have been in the place where we have assumed that the results were going to be given the next day and have been dissapointed when they did not come. It is to difficult to think about "when" the results will be given.
The 'not knowing' is not the most difficult part - it is the 'not doing' that is the hardest. It is as if the 'diagnoses' that will be given don't even matter anymore, it is the treatment plan that is important. We must have more information before treatment is to begin - so we will have to keep testing and waiting - but ultimately they can label the masses 'anything' and the most important information for us is what treatments are available and how effective are they. This is not to insinuate that the doctors are not working as quickly and as diligently as they can to diagnose and treat Robert. We can not express the amount of admiration and trust we have in the team of doctors that are fighting for us and with us. They are compassionate and caring and we pray for them to find the answers and celebrate Robert's recovery with us.
There have been inspirational moments and moments of recognition that we are surrounded by so many good people and it does keep our spirits raised.
On April 19th our friends supported us in raising 1,000 at our charity yard sale. They were planners, organizers, contributors, photographers, and the most amazing sales people. They arrived early and stayed late to keep pushing to do more. They raised awareness of brain cancer and raised money for critical research. They did it all with great energy and spirit. They are our never ending cheerleaders and we are forever grateful.
On May 3rd we completed the Race For Hope-DC surrounded by friends and family. Things were different then the year before and yet the inspiration and overwhelming emotion the the day remained the same. The team was bigger, the t-shirts were new (and GREAT), and the weather was different. The day that we had been planning for - for so long came and went quickly. Robert was able to attend and was pushed in a wheelchair by his brother. Having friends that will travel to DC in the rain and walk with us is an unbelievable act of support and we feel thankful to have so many people to call 'friends' We thank everyone who supported us through donations and know that you have made a difference in our lives and the lives of others.
There are so many people to thank- We thank those that bring us food, plant & deliver flowers for the sole purpose of giving them to others, send us messages of encouragement, send parking & food coupons for Hopkins, donate t-shirts, design/copy pamphlets, give an i-pod gift card so that we can find the music that helps to sooth our souls, arrange for a free haircut, arrange for baseball games and batting practice, who read this blog, give their time & energy to raise money and support our charities, and care for our children.
Thank you to those that make us laugh and allow us to be the center of attention. We look forward to the day that we hold conversations that involve other people.
Thanks to all!
The 'not knowing' is not the most difficult part - it is the 'not doing' that is the hardest. It is as if the 'diagnoses' that will be given don't even matter anymore, it is the treatment plan that is important. We must have more information before treatment is to begin - so we will have to keep testing and waiting - but ultimately they can label the masses 'anything' and the most important information for us is what treatments are available and how effective are they. This is not to insinuate that the doctors are not working as quickly and as diligently as they can to diagnose and treat Robert. We can not express the amount of admiration and trust we have in the team of doctors that are fighting for us and with us. They are compassionate and caring and we pray for them to find the answers and celebrate Robert's recovery with us.
There have been inspirational moments and moments of recognition that we are surrounded by so many good people and it does keep our spirits raised.
On April 19th our friends supported us in raising 1,000 at our charity yard sale. They were planners, organizers, contributors, photographers, and the most amazing sales people. They arrived early and stayed late to keep pushing to do more. They raised awareness of brain cancer and raised money for critical research. They did it all with great energy and spirit. They are our never ending cheerleaders and we are forever grateful.
On May 3rd we completed the Race For Hope-DC surrounded by friends and family. Things were different then the year before and yet the inspiration and overwhelming emotion the the day remained the same. The team was bigger, the t-shirts were new (and GREAT), and the weather was different. The day that we had been planning for - for so long came and went quickly. Robert was able to attend and was pushed in a wheelchair by his brother. Having friends that will travel to DC in the rain and walk with us is an unbelievable act of support and we feel thankful to have so many people to call 'friends' We thank everyone who supported us through donations and know that you have made a difference in our lives and the lives of others.
There are so many people to thank- We thank those that bring us food, plant & deliver flowers for the sole purpose of giving them to others, send us messages of encouragement, send parking & food coupons for Hopkins, donate t-shirts, design/copy pamphlets, give an i-pod gift card so that we can find the music that helps to sooth our souls, arrange for a free haircut, arrange for baseball games and batting practice, who read this blog, give their time & energy to raise money and support our charities, and care for our children.
Thank you to those that make us laugh and allow us to be the center of attention. We look forward to the day that we hold conversations that involve other people.
Thanks to all!
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