Today Rob will have outpatient surgery to have the port removed. Radiation is underway and Rob has already received 4 of the 22 scheduled treatments.
Last week we met with Dr. Garret (the radiation Oncologist) and he informed us that Rob was not a candidate for the tomotherapy radiation. Even though this is a very precise type of radiation, it is 360 degrees, therefore Rob would receive radiation from every angle which would cause both lungs and his heart to receive unnecessary amounts of radiation and put him at great risk for complications and long term side effects.
Dr. Garrett recommended the linear accelerator radiation. This will allow them to choose the angles from which the tumor will receive radiation, protecting the heart and lungs. His left lung will receive some radiation as well as the spine and esophagus, however the dose of radiation to these areas is well within the normal range or tolerated amount. The Dr feels that Rob will not suffer any long-term side effects to the lung and he is not worried about his heart because the ventricles are protected and away from the treament area. Of course, long-term side effects, are possible but Dr. Garrett felt they would be unlikely for Rob. (Thank God!) The possible short-term side effects are fatigue, difficulty swallowing, bad taste in his mouth, and some burning of the skin at the site.
Rob is feeling great right now, the best he has felt in months, and he was ready to get started with radiation. He still becomes tired easily, but he is getting his strength back. At this time, Rob is planning to return to work on March 2nd, although Dr. Garrett said he wanted Rob to be aware of the fatigue radiation can cause and said they would revisit the return to work plan if necessary.
Once treatments are completed, Rob will have another series of scans and blood work 3-6 months after the last treatment. They expect the radiation to take care of the rest of the "mass." It is still unknown if what is left of this tumor is in fact Lymphoma cancer. It could simply be scar tissue, but the risk of not doing radiation and it returning is too great and would be very bad for Rob.
So, we continue along this journey. Some days are great and other days are emotional and difficult for us. I am filled with some anxiety about treatment ending. Right now, Rob is doing something to kill the cancer cells (chemo, radiation, etc) but when treatment ends, then what? I think it will be unsettling to have to wait again, another 3-6 months to know what is happening in Rob's body...to know for sure if radiation worked. BUT, we remain optimistic and find great comfort in the prayers and support from all of you and our faith in God that He will heal Rob and we will soon be able to put some of this behind us.
Rob has been and continues to be amazing, filled with strength and a tremendous amount of courage. The boys are also amazing and pray for Rob every day. Mrs. Spearing (Sam's Kindergarten teacher) tells me that Sam prays for Rob every day in religion class and now has some of the other kids praying for their dad's as well (following Sam's example). Sam is inquisitive and will ask a lot of questions and really think about things. Thomas is filled with excitement and anticipation of Daddy getting well and thinks that each day that Rob comes home from treatment that he is "all better."
Please continue to keep us in your prayers and pray for Rob's complete healing.
Love to all of you.
Susie
Monday, February 23, 2009
Monday, February 9, 2009
Update
Yesterday we met with Dr. Garrett to learn more about the radiation and details of how it will work. Dr. Garrett spent time with us reviewing Rob's PET scan from September in comparison to the PET scan from last week. It was quite amazing to see - actually SEE - the difference in the size of this tumor. The Dr said when he looked at this scan from September, he could not believe that Rob was not having more symptoms in the begininng and suffering from sickness and difficulty breathing. Another testimony to Rob's strength and his body's fight against this thing!
As we were told last week, the tumor has decreased significantly, however radiation is the next sensible step in taking care of the rest of this tumor. The other options are more chemo, which we have been told by both doctors probably would not get rid of the tumor completely and the side effects could be severe and even toxic to his heart, OR do nothing and see what happens. The "do nothing" option doesn't seem appealing to us either, because if the mass that is left is in fact Lymphoma, it will begin growing again rapidly and Rob would then need a bone marrow transplant. As Dr. Garrett said, "The best chance to cure this, is the first chance." So...on to radiation...
Dr. Garrett said the biggest risk with radiation will be Rob's left lung. The tumor is positioned very near and somewhat over the lung, so the radiation area will encompass part of the lung. How much radiation will the lung actually receive? We do not know yet. It is my understanding that the lung can tolerate (if you will) some amount of radiation, but too much could cause serious long term problems. Tomorrow Rob will undergo a simulation which will define the treatment area and the areas that need to be protected from the radiation - a treatment plan. He will have small marks on his skin to identify the treatment area and the marks will be used each time to make sure his body is in the correct position. This treatment plan will also tell the Dr exactly what dose of radiation Rob will receive and give us a better understanding of the amount of radiation the lung may receive. The radiation dose will need to be balanced between being high enough to kill the cancer cells yet low enough to limit damage to healthy cells. The treatment plan will also identify the areas that need to be "shielded" or "protected."
Today, Rob went in for his echocardiogram and tomorrow we hope to know the results of that test as well as have the treatment plan completed. Rob is due to begin treatment next week.
More details to come as we receive them....
Please continue to keep us in your prayers. It has been and continues to be "quite the adventure" as Rob puts it.
Love and Blessings,
Susie
As we were told last week, the tumor has decreased significantly, however radiation is the next sensible step in taking care of the rest of this tumor. The other options are more chemo, which we have been told by both doctors probably would not get rid of the tumor completely and the side effects could be severe and even toxic to his heart, OR do nothing and see what happens. The "do nothing" option doesn't seem appealing to us either, because if the mass that is left is in fact Lymphoma, it will begin growing again rapidly and Rob would then need a bone marrow transplant. As Dr. Garrett said, "The best chance to cure this, is the first chance." So...on to radiation...
Dr. Garrett said the biggest risk with radiation will be Rob's left lung. The tumor is positioned very near and somewhat over the lung, so the radiation area will encompass part of the lung. How much radiation will the lung actually receive? We do not know yet. It is my understanding that the lung can tolerate (if you will) some amount of radiation, but too much could cause serious long term problems. Tomorrow Rob will undergo a simulation which will define the treatment area and the areas that need to be protected from the radiation - a treatment plan. He will have small marks on his skin to identify the treatment area and the marks will be used each time to make sure his body is in the correct position. This treatment plan will also tell the Dr exactly what dose of radiation Rob will receive and give us a better understanding of the amount of radiation the lung may receive. The radiation dose will need to be balanced between being high enough to kill the cancer cells yet low enough to limit damage to healthy cells. The treatment plan will also identify the areas that need to be "shielded" or "protected."
Today, Rob went in for his echocardiogram and tomorrow we hope to know the results of that test as well as have the treatment plan completed. Rob is due to begin treatment next week.
More details to come as we receive them....
Please continue to keep us in your prayers. It has been and continues to be "quite the adventure" as Rob puts it.
Love and Blessings,
Susie
Friday, February 6, 2009
Old Speckled Hen
Such GREAT news G!
Re: Stress... Obviously your doc doesn't know just how cool you are.
It was good seeing you (and Sharples) last weekend. Hopefully, the Old Speckled Hen has continued healing powers. You remain in our thoughts and prayers. Stay Strong.
Peace.
BB
Re: Stress... Obviously your doc doesn't know just how cool you are.
It was good seeing you (and Sharples) last weekend. Hopefully, the Old Speckled Hen has continued healing powers. You remain in our thoughts and prayers. Stay Strong.
Peace.
BB
BIG News Today
As most of you know, Rob and I met with Dr. Braden today to learn the results of all of the scans. As you can imagine we are on brain overload right now with medical information and my hand is cramped from the amount of notes I have taken! Here is the Cliff version....
Here is what we know at this time. On September 27th, the tumor measured 18 x 9 cm with an SUV (uptake value) of 19. (That simply means the business or activity taking place with the generation of cells and glucose absorbtion) Anything with a value over 2 is considered suspicious. On February 3rd, the results of the scans indicate the tumor now measures 4 x 3.5cm and has an SUV of 3.3. This is GREAT news!!!! However, what is left, needs to be "mopped up." It is hard to say if what they are looking at is completely dead or dying tissue or IF there is some Lymphoma still lingering within this very small mass. Dr. Braden said he felt that since the SUV was over 2 it warranted further action. The radiation team agreed as did the radiologist that viewed Rob's scans.
So, we met with Dr. Peter G. Garrett of the radiation team. Dr. Garrett feels confident that he can hit this tumor with radiation and take care of what is left. He said had radiation been needed in the beginning, it would have been difficult or impossible because of the location near the heart and aortic arch. Now that the tumor is much smaller, he feels that it will be possible to shield the major organs (including the heart) as well as shield some of the surrounding tissue. He seemed very confident and experienced. He has been doing this for 25 years and has practiced in Canada as well. He assured me that this is not the first tumor he has dealt with that has been in a precarious spot nor did he feel that I needed to worry about Rob's heart.
Now what? On Monday we will meet with Dr. Garrett again for a more in depth consultation and a better understanding of how they will pinpoint the location and how the radiation will work exactly. We are also going to be armed with many questions (at least I will be) after a weekend of reading and research. On Tuesday, Rob will have an echocardiogram. The hospital did an EKG and should have done an echo on Rob, so we are still in need of those results to be sure Rob's heart has not suffered any damage from the chemo.
Then, Rob will return to the radiation offices to have his chest area "mapped" so that they can do precise calculation and measurements to pinpoint radiation. THEN, one week from Monday (Feb 16th) he will start radiation. He will have radiation EVERY DAY for 4 or 5 weeks. Radiation will only take a few moments each day and Rob will experience possible (temporary) side effects such as fatigue, skin burns near the site, difficulty in swallowing and just general exhaustion. The long term side effects for Rob's situation will be discussed with us on Monday, although Dr. Garrett said they are uncommon.
It is recommended that during radiation, Rob maintains his weight with a high protein and high fiber diet. He should be able to continue daily activity and return to work in March (as planned), however it is expected that he will be very tired and should make time for rest during the day and get plenty of rest at night.
You might be wondering why surgery isn't an option (we were). Well, this type of cancer - Lymphoma - is a blood tissue cancer. They would never be able to cut out enough cells to get rid of the cancer. Besides that, if it were operable...it would still be very high risk or impossible because of the location.
Once this tumor is gone, Rob will have blood work every 3 months along with additional scans to monitor his LDH levels (indicates rapidly growing cells).
Dr. Braden said it is important we continue to keep a positive attitude, that this cancer IS CURABLE. He complimented Rob on how well he has handled the stress, the physical side effects and just how amazing his entire general state has been through all of this!
Unfortunatly the tumor is not gone, but thankfully we have a game plan, a group of confident doctors and a great support system of friends and family. Right now, Rob is feeling strong and ready to undergo radiation. FYI - his hair is returning, although I really like him bald!
Please continue to remember Rob in prayer as we travel down this new road to recovery.
Love and Blessings,
Susie
“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7).
Here is what we know at this time. On September 27th, the tumor measured 18 x 9 cm with an SUV (uptake value) of 19. (That simply means the business or activity taking place with the generation of cells and glucose absorbtion) Anything with a value over 2 is considered suspicious. On February 3rd, the results of the scans indicate the tumor now measures 4 x 3.5cm and has an SUV of 3.3. This is GREAT news!!!! However, what is left, needs to be "mopped up." It is hard to say if what they are looking at is completely dead or dying tissue or IF there is some Lymphoma still lingering within this very small mass. Dr. Braden said he felt that since the SUV was over 2 it warranted further action. The radiation team agreed as did the radiologist that viewed Rob's scans.
So, we met with Dr. Peter G. Garrett of the radiation team. Dr. Garrett feels confident that he can hit this tumor with radiation and take care of what is left. He said had radiation been needed in the beginning, it would have been difficult or impossible because of the location near the heart and aortic arch. Now that the tumor is much smaller, he feels that it will be possible to shield the major organs (including the heart) as well as shield some of the surrounding tissue. He seemed very confident and experienced. He has been doing this for 25 years and has practiced in Canada as well. He assured me that this is not the first tumor he has dealt with that has been in a precarious spot nor did he feel that I needed to worry about Rob's heart.
Now what? On Monday we will meet with Dr. Garrett again for a more in depth consultation and a better understanding of how they will pinpoint the location and how the radiation will work exactly. We are also going to be armed with many questions (at least I will be) after a weekend of reading and research. On Tuesday, Rob will have an echocardiogram. The hospital did an EKG and should have done an echo on Rob, so we are still in need of those results to be sure Rob's heart has not suffered any damage from the chemo.
Then, Rob will return to the radiation offices to have his chest area "mapped" so that they can do precise calculation and measurements to pinpoint radiation. THEN, one week from Monday (Feb 16th) he will start radiation. He will have radiation EVERY DAY for 4 or 5 weeks. Radiation will only take a few moments each day and Rob will experience possible (temporary) side effects such as fatigue, skin burns near the site, difficulty in swallowing and just general exhaustion. The long term side effects for Rob's situation will be discussed with us on Monday, although Dr. Garrett said they are uncommon.
It is recommended that during radiation, Rob maintains his weight with a high protein and high fiber diet. He should be able to continue daily activity and return to work in March (as planned), however it is expected that he will be very tired and should make time for rest during the day and get plenty of rest at night.
You might be wondering why surgery isn't an option (we were). Well, this type of cancer - Lymphoma - is a blood tissue cancer. They would never be able to cut out enough cells to get rid of the cancer. Besides that, if it were operable...it would still be very high risk or impossible because of the location.
Once this tumor is gone, Rob will have blood work every 3 months along with additional scans to monitor his LDH levels (indicates rapidly growing cells).
Dr. Braden said it is important we continue to keep a positive attitude, that this cancer IS CURABLE. He complimented Rob on how well he has handled the stress, the physical side effects and just how amazing his entire general state has been through all of this!
Unfortunatly the tumor is not gone, but thankfully we have a game plan, a group of confident doctors and a great support system of friends and family. Right now, Rob is feeling strong and ready to undergo radiation. FYI - his hair is returning, although I really like him bald!
Please continue to remember Rob in prayer as we travel down this new road to recovery.
Love and Blessings,
Susie
“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7).
Thursday, January 22, 2009
Thomas report
Thomas is feeling things with his dad are well under control. When his teacher asked him this week how his dad was doing, he responded, "He's fine, Sam's praying for him."
Monday, January 19, 2009
Update from the Infusion Room
Rob is currently receiving his 6th round of chemo today (as I type)...hopefully the very last!! We met with Dr. Braden today and he said that he felt Rob will have received the maximum results from 6 rounds and it is NOT likely that he will need to receive anymore chemotherapy. The risks of going beyond 6 rounds are too great...permanent neuropathy (tingling and numbness in his hands and feet) and possible heart damage. So, this is his last scheduled round of chemo and we pray that it will truly be the last!. After today, Rob will need to recover from this treatment and then the first week of February, he will have a series of PET and CT scans completed as well as an echogram of his heart. They want to make sure his heart is healthy and not damaged from the chemo he has already received and they also want to check the size of the tumor (hopefully it has melted away!!). The scans will also confirm that the cancer has not spread (which is unlikely).
We will meet with the doctor on Feb 6th and learn of the results and the next steps. If the tumor is gone, Rob will be finished with treatment and can focus on recovery and getting his strength back. He will have many visits to the Dr and many routine scans over the next several years to make sure that there is no cancer activity.
If there is any amount of the tumor left or scar tissue, we will need to meet with the radiation doctors and discuss radiation options. There is risk involved with the radiation since the tumor is so close to the heart, however we are told that it may be possible to use tomograph radiation and be able to shield his heart.
So, at this point...we need to stay positive, pray for great results and wait for the next steps along our journey.
Thank you so much for all of your love, support and prayers. We are so thankful and so blessed to have such an amazing group of family and friends supporting us and praying for us. We truly appreciate it more than we can express.
Love and Blessings to all of you.
Susie
We will meet with the doctor on Feb 6th and learn of the results and the next steps. If the tumor is gone, Rob will be finished with treatment and can focus on recovery and getting his strength back. He will have many visits to the Dr and many routine scans over the next several years to make sure that there is no cancer activity.
If there is any amount of the tumor left or scar tissue, we will need to meet with the radiation doctors and discuss radiation options. There is risk involved with the radiation since the tumor is so close to the heart, however we are told that it may be possible to use tomograph radiation and be able to shield his heart.
So, at this point...we need to stay positive, pray for great results and wait for the next steps along our journey.
Thank you so much for all of your love, support and prayers. We are so thankful and so blessed to have such an amazing group of family and friends supporting us and praying for us. We truly appreciate it more than we can express.
Love and Blessings to all of you.
Susie
Tuesday, January 6, 2009
Susie's Update
It has been a long week and a half for all of us, but I know it is especially hard for Rob. Although we each experience this cancer in our own way, for Rob it is something so big that we can only try to imagine and understand what it must feel like.
Each round of chemo is harder for him and round 5 is living up to its expectations and then some. Although Rob rarely complains or really talks about exactly how he feels, I know he is struggling with the side effects and feeling completely exhausted both emotionally and physically. Those of you that know Rob well, know he is a man of few words, but his actions speak for him. His movements through the house are much slower, he is sleeping more and tends to remain in bed most of each day with just short bursts of energy to play with the kids or moments around the table for a meal with us. I am sure this is partly because with a wife and two young boys in the house you are not able to rest much outside of the bedroom. The kids try to understand, but it is hard for them too. They see daddy and just want to run and play. I see Rob and just want to talk about everyday things (not cancer) or ask for his help with the kids or around the house. I continue to do what I can to make his recovery the best that it can be, but some days I feel like I just have nothing left to give or I just don't know what else to do. I guess maybe today is one of those days for me. As I type this, Sam is watching Spongebob and Thomas is throwing a fit in his bedroom. Rob is somehow resting through Thomas' tantrum and I am blogging, and cooking dinner ...2 options because I don't know which will sound good to Rob.
So, with each passing day I know things will improve for Rob. His strength will return and he will slowly begin to feel better. AND, as Rob says "just in time to do it all over again." We continue to pray for strength to get through this, grace to bear the cross that we carry and blessings upon Rob for his complete healing.
The next round of chemo will take place on January 19th. We pray that this will be the last round for him and that the cancer is gone. He will have additional PET and CT scans the first week of February and we will learn, at that time, the next steps for Rob.
Blessings and love to all of you. Thank you for your continued prayers for our family.
Susie
"They that hope in the Lord will renew their strength, they will soar as with eagles' wings, they will run and not grow weary, walk and not grow faint." Isaiah 40:31
Each round of chemo is harder for him and round 5 is living up to its expectations and then some. Although Rob rarely complains or really talks about exactly how he feels, I know he is struggling with the side effects and feeling completely exhausted both emotionally and physically. Those of you that know Rob well, know he is a man of few words, but his actions speak for him. His movements through the house are much slower, he is sleeping more and tends to remain in bed most of each day with just short bursts of energy to play with the kids or moments around the table for a meal with us. I am sure this is partly because with a wife and two young boys in the house you are not able to rest much outside of the bedroom. The kids try to understand, but it is hard for them too. They see daddy and just want to run and play. I see Rob and just want to talk about everyday things (not cancer) or ask for his help with the kids or around the house. I continue to do what I can to make his recovery the best that it can be, but some days I feel like I just have nothing left to give or I just don't know what else to do. I guess maybe today is one of those days for me. As I type this, Sam is watching Spongebob and Thomas is throwing a fit in his bedroom. Rob is somehow resting through Thomas' tantrum and I am blogging, and cooking dinner ...2 options because I don't know which will sound good to Rob.
So, with each passing day I know things will improve for Rob. His strength will return and he will slowly begin to feel better. AND, as Rob says "just in time to do it all over again." We continue to pray for strength to get through this, grace to bear the cross that we carry and blessings upon Rob for his complete healing.
The next round of chemo will take place on January 19th. We pray that this will be the last round for him and that the cancer is gone. He will have additional PET and CT scans the first week of February and we will learn, at that time, the next steps for Rob.
Blessings and love to all of you. Thank you for your continued prayers for our family.
Susie
"They that hope in the Lord will renew their strength, they will soar as with eagles' wings, they will run and not grow weary, walk and not grow faint." Isaiah 40:31
Thursday, January 1, 2009
Wishing a you a divine 2009!
Uncle Rob...we are sending you our love and prayers in this New Year!
Michael, Mary and Molly
"To the child of God, there is no such thing as an accident. He travels an appointed way. Accidents may indeed appear to befall him and misfortune stalk his way, but these evils will be so in appearance only and will seem evils only because we cannot read the secret script of God's hidden providence and so cannot discover the ends at which He aims. The man of true faith may live in the absolute assurance that his steps are ordered by the Lord. For him, misfortune is outside the bounds of possibility. He cannot be torn from this earth one hour ahead of the time which God has appointed, and he cannot be detained on earth one moment after God is done with him here." - AW Tozer
Wednesday, December 31, 2008
Wednesday, December 17, 2008
Rob...a man of faith, love and so much courage!
Just wanted to let all of you know that he is doing well. It was a rough week for him as we expected. Going forward the chemo treatments will be much more challenging for Rob. Today, one week and one day from his last chemo, he is feeling much better and had a restful night of sleep. We hope that each day Rob will continue to regain his strength and feel better. The next round of chemo will be on December 29th.
Tonight at dinner, we took turns going around the table to thank God for something and Sam went first...."I want to thank God for daddy going to the hospital and getting x-rays. And I want to thank God that daddy is getting medicine and for making daddy better." As you can imagine, Rob and I were both so surprised with his words and brought to tears by Sam's innocence and his faith. This is such a joyous time of year as we prepare for Jesus' Birthday (and of course, Santa's arrival) and how wonderful to see such Spirit in our children. I have no doubt that as this journey changes us, as adults, it is also shaping and changing our boys. God works in such wonderful ways and he chose us to experience such love and so much faith. So, we continue to take one day at a time and ask for your prayers as we share our journey with you. Thank you for your support and continued prayers.
Love and blessings to all of you.
Susie
Tonight at dinner, we took turns going around the table to thank God for something and Sam went first...."I want to thank God for daddy going to the hospital and getting x-rays. And I want to thank God that daddy is getting medicine and for making daddy better." As you can imagine, Rob and I were both so surprised with his words and brought to tears by Sam's innocence and his faith. This is such a joyous time of year as we prepare for Jesus' Birthday (and of course, Santa's arrival) and how wonderful to see such Spirit in our children. I have no doubt that as this journey changes us, as adults, it is also shaping and changing our boys. God works in such wonderful ways and he chose us to experience such love and so much faith. So, we continue to take one day at a time and ask for your prayers as we share our journey with you. Thank you for your support and continued prayers.
Love and blessings to all of you.
Susie
Monday, December 8, 2008
Update!!
Praise God...our prayers are being answered! Thank you so much to all of the prayer warriors out there...I know we have been storming heaven and our prayers are being answered. Today we found out that the tumor in Rob's chest has decreased over 50%!!! The size of the tumor now measures 7.7 cm compared to 17.2 cm. No enlarged lymph nodes were found which means the lymphoma has not spread. His heart, liver, spleen, pancreas, gallbladder and adrenal glands are all normal in size. AND...the pericardial fluid (fluid around the heart) is gone! We are so blessed and so happy to have received such great news today!
So, what is the next step?? Rob will continue the scheduled 6 rounds of chemo, today was the 4th round. In late January, early February they will complete a PET scan of his entire body and if the tumor is gone or showing as dead mass/tissue, Rob will be finished with treatment and monitored closely to be sure that it does not return. If there is any amount of the tumor left, he will have to undergo 2 additional rounds of chemo and possibly radiation. Dr. Braden did tell us that this is a possibility because the tumor was so large and that we will cross this bridge when we get there.
They lowered the dose of the vincristine drug today because Rob is experiencing tingling/numbness in his fingertips. This is an irreversible side effect and the Dr. did not want this to get any worse for Rob as it can have a big effect on his quality of life should it get worse and move into his arms, legs and feet. Dr. Braden assured us that lowering the dose would not change the outcome of the chemo treatments.
Today went well, however Rob is exhausted from the chemo. He came home and went straight to bed. We were told that this chemo treatment and the next 2 would probably be the hardest for him since the drugs are accumulating in his body. The Dr. also advised us to watch Rob closely for illness and fevers and to contact them right away if one should develop. This time of year with so much flu, he especially needs to be careful.
Overall, Dr. Braden is extremely pleased with how Rob is handling everything mentally and physically. He said he was amazed at how tolerant Rob's body is of the chemo and glad to see he is still gaining weight.
Please continue to lift Rob up in prayer as we move forward on this journey and road to complete healing.
I trust in your faithfulness. Grant my heart joy in your help, that I may sing of the Lord, "How good our God has been to me!" Psalm 13:6
With love to all of you for your prayers and support.
Susie
So, what is the next step?? Rob will continue the scheduled 6 rounds of chemo, today was the 4th round. In late January, early February they will complete a PET scan of his entire body and if the tumor is gone or showing as dead mass/tissue, Rob will be finished with treatment and monitored closely to be sure that it does not return. If there is any amount of the tumor left, he will have to undergo 2 additional rounds of chemo and possibly radiation. Dr. Braden did tell us that this is a possibility because the tumor was so large and that we will cross this bridge when we get there.
They lowered the dose of the vincristine drug today because Rob is experiencing tingling/numbness in his fingertips. This is an irreversible side effect and the Dr. did not want this to get any worse for Rob as it can have a big effect on his quality of life should it get worse and move into his arms, legs and feet. Dr. Braden assured us that lowering the dose would not change the outcome of the chemo treatments.
Today went well, however Rob is exhausted from the chemo. He came home and went straight to bed. We were told that this chemo treatment and the next 2 would probably be the hardest for him since the drugs are accumulating in his body. The Dr. also advised us to watch Rob closely for illness and fevers and to contact them right away if one should develop. This time of year with so much flu, he especially needs to be careful.
Overall, Dr. Braden is extremely pleased with how Rob is handling everything mentally and physically. He said he was amazed at how tolerant Rob's body is of the chemo and glad to see he is still gaining weight.
Please continue to lift Rob up in prayer as we move forward on this journey and road to complete healing.
I trust in your faithfulness. Grant my heart joy in your help, that I may sing of the Lord, "How good our God has been to me!" Psalm 13:6
With love to all of you for your prayers and support.
Susie
It's on the run
Results of Rob's latest scans indicate the tumor has shrunk significantly, 17.2 cm to 7.7 cm, and there is no sign of any spread of the cancer to anywhere else. More to come, this is news hot off the chart.
Wednesday, November 26, 2008
Keep hanging in there!
Rob and Susie,
I know the last few months have been trying for both of you, but keep hanging in there. Hopefully you are half way there. I know your faith has been tested, but this whole experience will bring your faith to light and strengthen your faith in God. The little annoyances of life will look so small compared to all of this. Keep doing such a great job being positive and creating a positive environment for your kids. Know that we are here if you need anything and our prayers continue to be with you. Maybe Rob will even be up to playing some summer softball. Happy Thanksgiving! Amy Browning
I know the last few months have been trying for both of you, but keep hanging in there. Hopefully you are half way there. I know your faith has been tested, but this whole experience will bring your faith to light and strengthen your faith in God. The little annoyances of life will look so small compared to all of this. Keep doing such a great job being positive and creating a positive environment for your kids. Know that we are here if you need anything and our prayers continue to be with you. Maybe Rob will even be up to playing some summer softball. Happy Thanksgiving! Amy Browning
Tuesday, November 25, 2008
Gearing up for Thanksgiving
The last few days have been pretty hard for Rob. He has been in bed the majority of the time since Sunday evening. This evening, he joined the boys and me for a spaghetti and meat sauce dinner (his request) and then we had some family time with the kids, curled up in the big chair and watching cartoons. I hope and pray that this is a sign that he is on the upswing and will start getting his energy back and begin to feel better. This round of chemo seems to have been the hardest for him and for his body so far. Thankfully, Rob has not been sick or nauseated with the chemo, but he does experience many other side effects. The tingling in his fingers may be getting a little worse and we will need to let the Dr know if this continues. The drug that causes this can be adjusted to hopefully control this. He also has major soreness in his body and aches and pains in his hips and back, also a side effect of the chemo. The pain makes it hard for him to sleep or to rest comfortably. He is experiencing headaches and is completely wiped out by the chemo for several days.
On a positive note, he has completed 3 rounds of chemo and we pray that we are half-way there! A CT Scan will take place the first week of December and we will have a better idea of how well the tumor is responding to chemo. The Dr continues to be very pleased with Rob and his appearance, his energy, his weight gain and his ability to bounce back after chemo. These are all such great signs and must indicate progress!! The Dr commented that if the chemo was not working, that Rob would be a "very sick man" right now. So, we are blessed to know that the chemo, as difficult as it is for Rob, is working!
Rob continues to be amazing through all of this and he has a positive attitude! We are gearing up for Turkey Day with our families and hope that Rob feels well enough to at least be able to have a few short visits with everyone and enjoy some Thanksgiving feasts and festivities.
Your prayers are being answered and we appreciate so much that you continue to hold Rob in your prayers and support us during this time.
Love to all of you!
Susie
On a positive note, he has completed 3 rounds of chemo and we pray that we are half-way there! A CT Scan will take place the first week of December and we will have a better idea of how well the tumor is responding to chemo. The Dr continues to be very pleased with Rob and his appearance, his energy, his weight gain and his ability to bounce back after chemo. These are all such great signs and must indicate progress!! The Dr commented that if the chemo was not working, that Rob would be a "very sick man" right now. So, we are blessed to know that the chemo, as difficult as it is for Rob, is working!
Rob continues to be amazing through all of this and he has a positive attitude! We are gearing up for Turkey Day with our families and hope that Rob feels well enough to at least be able to have a few short visits with everyone and enjoy some Thanksgiving feasts and festivities.
Your prayers are being answered and we appreciate so much that you continue to hold Rob in your prayers and support us during this time.
Love to all of you!
Susie
Monday, November 17, 2008
Hugs from Atlanta
Rob,We are thinking of you today. While your body fights and may be weakened from the chemo, your spirit is strong.
Be strong and courageous, do not be terrified, do not be discouraged for the Lord your God will be with you wherever you go. Joshua 1:9
Hugs,
Amy, Mike, Mary, Molly and Michael
Saturday, November 15, 2008
Go Hoosiers!
I talked to Rob today and he sounds fantastic. His energy level is high as is evidenced by the fact that as I type this he is in Bloomington rooting on the Hoosiers in Assembly Hall. :-) If you are watching the game on Big Ten Network you might spot him in his Indiana hooded sweatshirt behind the IU bench. On the medical front Rob goes in Monday for his next round of chemo - which is the half-way point (good news!) and then he gets a CT Scan a couple of weeks later where they will see how much damage has been done on the tumor (hopefully a ton).
Robby G, you and the fam are in our thoughts and prayers as you gear up for this next milestone. Go Big Red! (yes IU and Denison are both the Big Red - cool eh?)
The Sharp Fam
Robby G, you and the fam are in our thoughts and prayers as you gear up for this next milestone. Go Big Red! (yes IU and Denison are both the Big Red - cool eh?)
The Sharp Fam
Thursday, November 6, 2008
Rob at the IU game
Last Saturday was an fantastic day for IU football. We arrived early enough to enjoy some tailgating, then went inside for the game. We had a great time stuffing ourselves with brats and hanging out with friends. While the game itself didn't turn out how we wanted, the weather was beautiful, especially for the first day of November! Always a good time at the Hoosier games and look forward to many more!!
Wednesday, November 5, 2008
A little wierd, but cool!!!
Hey Rob! Glad I could finally find my way to your blog. "It was a little wierd, but cool" to spend time at your place on Halloween. Just had to quote your little man! Hope you are having a good week. Peace brother! Father Rick
Tuesday, November 4, 2008
Rob's Progress
Just wanted to update everyone on how Rob has been doing since his second round of chemo. Thankfully, he has not had any severe side effects from chemo. However, Rob is experiencing many other common side effects. He is very tired and has had a headache for a few days. He also has many aches and pains in his back and hips. Today he noticed that he has a tingling sensation in his fingertips. These are all very common side effects, but regardless they are bothersome for Rob.
He has been taking it easy and resting when he needs to rest. He did make it to the IU game on Saturday, however that really took it out of him and he was down most of the day on Sunday. I think that Rob realized the effect of steroids. As the Dr told us, steroids can give you a false sense of energy and then once you are finished with the dose of steroids, you're energy and stamina can really crash.
We are taking one day at a time and the boys and I are trying to give him peace and quiet when he needs it. Although it is hard for the kids to understand the magnitude of Rob's illness and that he has to rest often, they are handling things as well as can be expected and are still enjoying being little boys. I am trying to keep things as "normal" as possible for them and sticking to our daily routine seems to help all of us.
We are looking forward to having Rob's sisters and parents with us this weekend and hoping that Rob is feeling well enough soon to enjoy some of this summer-like weather before it leaves us.
All in all, Rob is doing well. He continues to have a great attitude with an admirable amount of strength and courage. Rob is an amazing man...despite his battle, he continues to be a great husband and the very best daddy.
"They that hope in the Lord will renew their strength, they will soar as with eagles' wings. They will run and not grow weary, walk and not grow faint." Isaiah 40:31
Thank you for your continued prayers.
Love, Susie
He has been taking it easy and resting when he needs to rest. He did make it to the IU game on Saturday, however that really took it out of him and he was down most of the day on Sunday. I think that Rob realized the effect of steroids. As the Dr told us, steroids can give you a false sense of energy and then once you are finished with the dose of steroids, you're energy and stamina can really crash.
We are taking one day at a time and the boys and I are trying to give him peace and quiet when he needs it. Although it is hard for the kids to understand the magnitude of Rob's illness and that he has to rest often, they are handling things as well as can be expected and are still enjoying being little boys. I am trying to keep things as "normal" as possible for them and sticking to our daily routine seems to help all of us.
We are looking forward to having Rob's sisters and parents with us this weekend and hoping that Rob is feeling well enough soon to enjoy some of this summer-like weather before it leaves us.
All in all, Rob is doing well. He continues to have a great attitude with an admirable amount of strength and courage. Rob is an amazing man...despite his battle, he continues to be a great husband and the very best daddy.
"They that hope in the Lord will renew their strength, they will soar as with eagles' wings. They will run and not grow weary, walk and not grow faint." Isaiah 40:31
Thank you for your continued prayers.
Love, Susie
Wednesday, October 29, 2008
Second Round Of Chemo Update
So, Rob had his second round of chemo on Monday. It was a big day, starting at 6:30am with his arrival at the surgery center. He had the port placed in his chest, which will now be used to have blood drawn and to administer future rounds of chemo. After the port placement, they did a quick chest xray to make sure that the port was OK...it was! Even in Rob's haze of sedation, he requested to see the xray and asked about the size of the tumor. Of course, the technician did not want to give us any info about that tumor. (more about that in a minute.)
From the recovery, Rob went straight for chemo....6 hours of chemo! He slept for the most part. Besides the sedation from the surgery, he also had a pretty large dose of benadryl..so, no playing cards with me that day...I was on my own to entertain myself! Chemo went well, he felt pretty good with the exception of a brief moment with a hot flash and near passing out. The nurses quickly came to his aid and stopped the medications for a few minutes until he felt better.
Yesterday, Tuesday, Rob had an exam with Dr. Braden...Rob has gained 8 pounds!! The Doc was very pleased with this and said that the steroids are working. Hooray! So...again Rob asked about that quick xray they did on Monday...wondering if anything had changed in the size of the tumor. (Keep in mind...the xray was taken after only 1 round of chemo...Rob had not yet received the second dose of chemo.) Dr. Braden checked out the xray and it was noted that the tumor "had decreased in size." Thank God for this!!! We are very excited about that news. We don't have measurements because the xray was taken solely for the purpose to review the port placement, but we at least know the radiologist noted a decrease in the size of the tumor. This is such uplifting and GREAT news! We can only thank God for this, as we know he is working in such beautiful ways right now to heal Rob.
So, Rob is doing well. He is tired and doesn't have a lot of physical strength right now, but he has a great attitude and is very upbeat. His body is sore and achy from the injection they give to boost his white blood cells. This effects his bone marrow and causes aches and pains for several days, but again...we know it is working! So, please continue to pray for Rob and his complete healing. We also ask that you please pray that Anthem insurance and St. Francis hospital can resolve their differences and we are not forced to change doctors and hospitals during all of this.
Thank you all for your love and support. Our family and friends mean the world to us and we could not get through this without all of you!
"Wait for the Lord's help. Be strong and brave, and wait for the Lord's help." Psalm 27:14
From the recovery, Rob went straight for chemo....6 hours of chemo! He slept for the most part. Besides the sedation from the surgery, he also had a pretty large dose of benadryl..so, no playing cards with me that day...I was on my own to entertain myself! Chemo went well, he felt pretty good with the exception of a brief moment with a hot flash and near passing out. The nurses quickly came to his aid and stopped the medications for a few minutes until he felt better.
Yesterday, Tuesday, Rob had an exam with Dr. Braden...Rob has gained 8 pounds!! The Doc was very pleased with this and said that the steroids are working. Hooray! So...again Rob asked about that quick xray they did on Monday...wondering if anything had changed in the size of the tumor. (Keep in mind...the xray was taken after only 1 round of chemo...Rob had not yet received the second dose of chemo.) Dr. Braden checked out the xray and it was noted that the tumor "had decreased in size." Thank God for this!!! We are very excited about that news. We don't have measurements because the xray was taken solely for the purpose to review the port placement, but we at least know the radiologist noted a decrease in the size of the tumor. This is such uplifting and GREAT news! We can only thank God for this, as we know he is working in such beautiful ways right now to heal Rob.
So, Rob is doing well. He is tired and doesn't have a lot of physical strength right now, but he has a great attitude and is very upbeat. His body is sore and achy from the injection they give to boost his white blood cells. This effects his bone marrow and causes aches and pains for several days, but again...we know it is working! So, please continue to pray for Rob and his complete healing. We also ask that you please pray that Anthem insurance and St. Francis hospital can resolve their differences and we are not forced to change doctors and hospitals during all of this.
Thank you all for your love and support. Our family and friends mean the world to us and we could not get through this without all of you!
"Wait for the Lord's help. Be strong and brave, and wait for the Lord's help." Psalm 27:14
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