Journal entry by Genet Riggenbach —
You know that saying it goes something along the lines of...the devil whispered in my ear your not strong enough to withstand the storm...it then follows with...I am the storm.
This has been a quote I have often felt to my core growing up and as an adult...there have been many times in life when I have felt that everyday is hard and everyday is more difficult than the next yet I have always been blessed with my faith and how it has allowed me to persist through the storms of my life. This is like no other storm I have experienced, this is unlike anything I could have ever imagined enduring and yet everyday as I have for the past 25 days I have told Sawyer today we fight, today we take one step forward even if we are taking 10 back we are still going to take one step forward. Because we are the storm and the devil will never over power our faith!
25 days, we have been fighting and we will continue to fight because the devil has no place in our lives and we will stand firm in our faith as hard as it may be some days and we will overcome.
It has been a very long 25 days for Sawyer, in Chapter 9 I wrote about being home and how scared I was and how worried for Sawyer I was...well my friends it turns out I wasn't crazy and yet again mom gut persevered and was right...we left Akron Children's on Wednesday around 9:30pm and arrived back on Saturday around 4pm. Sawyer was not feeling well and was continuing to decline as we were allowing time to pass...remember when I said he was sick when we left and I didn't want to take him home but I also wanted the next 12 days to be home with all my kids...we were blessed with two days together and what a blessing it was....I miss my babies so much I physically ache because of the pain of not seeing them.
They tell you that Burkitts Lymphoma is a terribly fast producing lymphoma and its treatment is harsh and aggressive which often causes its patients to stay in the hospital more than they are home during treatments....but you know me well enough to know that I am one to never feel as though I or my children should ever conform to the norm....well I was wrong...go ahead and let Taco know I publicly admitted I was wrong...its cool...he won't believe you....anyway...I was wrong....we were so blessed to be home for two days, I was able to wake up and go to bed in the same house as my babies(well Brant was sick and was at his dads and Micah was on vacation with his mom, but at least I was able to spend time with four of the six, so I will take it) it was a very short two days but I will joyfully take each and everyday as I can. Unfortunately Sawyer was declining quickly, he began to get mouth sores, and sores on his bottom, his cough had increasingly worsened, and he now was spiking a fever, which of course means a hospital stay for Sawyer.
At the hospital the trails which Sawyer faced only mounted...they could not use his port which was placed to help eliminate IV's as well as it is more withstanding for long periods of time than an IV, they could not use it now because it was so badly bruised(many people have asked why, if you recall back on the day it was placed he had underwent intense trauma and things had to move quickly, the surgeons have been in to see the site daily and are making sure there is no infection, they have apologized multiple times but unfortunately given the situation it was a possible outcome and well Sawyer is just making sure he is checking off all the boxes that not many others have checked), they had to put three different IV sites in, he was running fevers which were not coming down with Tylenol, and he enviably had to have a pic line placed.
Lets discuss some of the fears during these trials which we were faced with. The port site...looking at it makes us cry, Sawyer has fought so hard to handle the pain in silence which breaks my heart even more. The reality of using the port was never an option once the Dr's looked at it again, and truthfully I had told them when they were disusing re-accessing the port they would not be using it, I would not allow them to even put him through any pain at his port site right now. Which meant that Sawyer would have to have an IV...friends if you could have seen the look on his face when they said IV...he looked straight at me saying,"mommy no, I'm scared." It was then I wanted to scream and cry out loud and yell please take all this from my son. But as we must we persisted on and Sawyer received two IV's that night, one in each arm and one in his foot. The next day we were hopeful to have a pic line inserted and for the procedure Sawyer was told he would be asleep(I have a very strict rule of not telling Sawyer anything until we are 100% that it will happen as planned) well my friends, Sawyers body had other plans and the sedation team would not touch him because he was on oxygen and without the oxygen his saturation was well below 80 at this point. So yes, Sawyer was awake during the whole procedure...when I say Sawyer is simply amazing I really mean it my friends. Sawyer sat there allowed me to hold his hand talking to him relaxing him allowing him to practice his focused breathing(its what he as taught himself to relax, again amazing) he laid there just succumbing to the whole procedure as if he is now understanding that as scared as he is he can either make the best or the worst of the situation. That reality is a harsh one to handle as a parent. Realizing that your child is scared, in pain and has an understanding that it just doesn't matter any more that this is just his reality right now....I keep telling myself this is temporary this is just a chapter in Sawyers long book of life, but truthfully some days it is so hard to believe.
Sawyer is a fighter and I am amazed everyday by his desire to fight back, right now as I type this he is sleeping, trying so hard to break the fevers(day 4 of fevers and no end in sight right now), the horrible pneumonia, and the sores. Unfortunately for Sawyer every single Dr. and nurse that has come into this room have all said we have seen the pictures and these are the worst sores we have seen on a child before(WOW thanks makes me feel great every single time I hear it...like seriously not something I want to hear on the daily). As one Dr. said every morning when they are in their meeting they discuss every patient. The new things, the upcoming events everything about that patient, all 9 Dr.s and the head nurses all weigh in. So we have been told when they get to Sawyer it is always said, one that they are always amazed by his kindness and patience, and two they always say that if it is going to go wrong it is going to go wrong with Sawyer, because my friends they always walk in the room everyday and say, "Sawyer the anomaly what do we have today?" I have always said that I never want my children to confirm to all the ways of society, I want them to create their own path, and I want them to do it with grace and love. I just didn't want this to be one of the paths they created...I guess Sawyer had other plans, or well God did.
Unfortunately it looks as if we will be in here for quite some time, something I'm OK with right now especially with what is going on in the world right now. Sadly that means not being able to see the other kiddos much at all...I can't risk the chance for infection with Sawyer right now. His counts are at 0 and as much as they are hoping they rise quickly it is not looking promising right now. I honestly feel his body is fighting so hard to heal all the other things that have popped up(mouth and bottom sores, fevers, pneumonia) that it is not making enough white and red blood cells to keep up with all the healing it needs. But he is fighting and has promised me he is fine every day, he always tells me he is fine and that I can stop worrying.
Like I have said many times Sawyer is amazing as hard as his days are as much as he asks me everyday when will I get better he still tries to smile, laugh and he always reminds me that we need to pray. He prays all day long, he tells me its what he does when he breathes his focused breathing. He is an absolute inspiration everyday to me to keep my faith even when the days are looking dark. Sitting here listening to him breathing how difficult it is for him right now, my eyes constantly diverting from the monitors to him I find a solace in the little things I can do for him, I can wipe his nose(we have gone through 4 boxes of tissues since Saturday its only Wednesday) I can help him with his mouth care and scratching every itchy spot, and I can hold his hand when he needs me(mostly its for me lets be real, I need it) and I can watch him and his numbers. I know they probably think I'm crazy but I don't often give them an inch, I ask questions, I read, I listen, I make sure they are giving him the best attention they can, sadly he has become a one on one for any nurse and the Dr's make his room the last room(truthfully he is on isolation and you can only enter his room with a gown and a mask on)because they spend a good 45 minutes with us everyday.
Through all of this I realize I do not often mention all that Jaime does for all of us....Jaime is another hero, he is showing up, working at the farm, bringing dinners, washing laundry, getting us all the things we need to make it through our days, he's here supporting, talking to us, making everyone laugh(its what he does all the time), and he helps Sawyer just knowing he is there helps Sawyer feel safe. Jaime has been here for everything he is doing so much more than I am right now, he is running back and forth, making sure life outside of the hospital is still going on....its the one thing he knows I struggle with. I can't leave the hospital because my heart is so pulled in both directions...I didn't want to leave on Saturday to come back because I knew it would be for a long stay and saying goodbye is the hardest part for me(I hate good byes). Leaving for me right now means I have to leave my other babies all over again and selfishly my heart just can't handle it right now.
So when I say I hate cancer I truly mean I hate cancer and everything it does to a human, a family, friends, and everyone along the way it comes in contact with. I hate watching this horrible disease consume everyone and everything that is in its path, I hate how it has mad me a terrible mother and how it has taken so much from my children. I hate how it is taking over my sons body, how hard he is fighting to just exist, and I hate that any child any adult any human has to ever experience this disease. But as I stated before...as many times as the devil whispers you can't handle the storm....we are all fighting back saying we are the storm. In our world right now of uncertainty and so much fear and anxiety never forget that you are stronger than you know. Stay healthy and safe my friends until next time.
This has been a quote I have often felt to my core growing up and as an adult...there have been many times in life when I have felt that everyday is hard and everyday is more difficult than the next yet I have always been blessed with my faith and how it has allowed me to persist through the storms of my life. This is like no other storm I have experienced, this is unlike anything I could have ever imagined enduring and yet everyday as I have for the past 25 days I have told Sawyer today we fight, today we take one step forward even if we are taking 10 back we are still going to take one step forward. Because we are the storm and the devil will never over power our faith!
25 days, we have been fighting and we will continue to fight because the devil has no place in our lives and we will stand firm in our faith as hard as it may be some days and we will overcome.
It has been a very long 25 days for Sawyer, in Chapter 9 I wrote about being home and how scared I was and how worried for Sawyer I was...well my friends it turns out I wasn't crazy and yet again mom gut persevered and was right...we left Akron Children's on Wednesday around 9:30pm and arrived back on Saturday around 4pm. Sawyer was not feeling well and was continuing to decline as we were allowing time to pass...remember when I said he was sick when we left and I didn't want to take him home but I also wanted the next 12 days to be home with all my kids...we were blessed with two days together and what a blessing it was....I miss my babies so much I physically ache because of the pain of not seeing them.
They tell you that Burkitts Lymphoma is a terribly fast producing lymphoma and its treatment is harsh and aggressive which often causes its patients to stay in the hospital more than they are home during treatments....but you know me well enough to know that I am one to never feel as though I or my children should ever conform to the norm....well I was wrong...go ahead and let Taco know I publicly admitted I was wrong...its cool...he won't believe you....anyway...I was wrong....we were so blessed to be home for two days, I was able to wake up and go to bed in the same house as my babies(well Brant was sick and was at his dads and Micah was on vacation with his mom, but at least I was able to spend time with four of the six, so I will take it) it was a very short two days but I will joyfully take each and everyday as I can. Unfortunately Sawyer was declining quickly, he began to get mouth sores, and sores on his bottom, his cough had increasingly worsened, and he now was spiking a fever, which of course means a hospital stay for Sawyer.
At the hospital the trails which Sawyer faced only mounted...they could not use his port which was placed to help eliminate IV's as well as it is more withstanding for long periods of time than an IV, they could not use it now because it was so badly bruised(many people have asked why, if you recall back on the day it was placed he had underwent intense trauma and things had to move quickly, the surgeons have been in to see the site daily and are making sure there is no infection, they have apologized multiple times but unfortunately given the situation it was a possible outcome and well Sawyer is just making sure he is checking off all the boxes that not many others have checked), they had to put three different IV sites in, he was running fevers which were not coming down with Tylenol, and he enviably had to have a pic line placed.
Lets discuss some of the fears during these trials which we were faced with. The port site...looking at it makes us cry, Sawyer has fought so hard to handle the pain in silence which breaks my heart even more. The reality of using the port was never an option once the Dr's looked at it again, and truthfully I had told them when they were disusing re-accessing the port they would not be using it, I would not allow them to even put him through any pain at his port site right now. Which meant that Sawyer would have to have an IV...friends if you could have seen the look on his face when they said IV...he looked straight at me saying,"mommy no, I'm scared." It was then I wanted to scream and cry out loud and yell please take all this from my son. But as we must we persisted on and Sawyer received two IV's that night, one in each arm and one in his foot. The next day we were hopeful to have a pic line inserted and for the procedure Sawyer was told he would be asleep(I have a very strict rule of not telling Sawyer anything until we are 100% that it will happen as planned) well my friends, Sawyers body had other plans and the sedation team would not touch him because he was on oxygen and without the oxygen his saturation was well below 80 at this point. So yes, Sawyer was awake during the whole procedure...when I say Sawyer is simply amazing I really mean it my friends. Sawyer sat there allowed me to hold his hand talking to him relaxing him allowing him to practice his focused breathing(its what he as taught himself to relax, again amazing) he laid there just succumbing to the whole procedure as if he is now understanding that as scared as he is he can either make the best or the worst of the situation. That reality is a harsh one to handle as a parent. Realizing that your child is scared, in pain and has an understanding that it just doesn't matter any more that this is just his reality right now....I keep telling myself this is temporary this is just a chapter in Sawyers long book of life, but truthfully some days it is so hard to believe.
Sawyer is a fighter and I am amazed everyday by his desire to fight back, right now as I type this he is sleeping, trying so hard to break the fevers(day 4 of fevers and no end in sight right now), the horrible pneumonia, and the sores. Unfortunately for Sawyer every single Dr. and nurse that has come into this room have all said we have seen the pictures and these are the worst sores we have seen on a child before(WOW thanks makes me feel great every single time I hear it...like seriously not something I want to hear on the daily). As one Dr. said every morning when they are in their meeting they discuss every patient. The new things, the upcoming events everything about that patient, all 9 Dr.s and the head nurses all weigh in. So we have been told when they get to Sawyer it is always said, one that they are always amazed by his kindness and patience, and two they always say that if it is going to go wrong it is going to go wrong with Sawyer, because my friends they always walk in the room everyday and say, "Sawyer the anomaly what do we have today?" I have always said that I never want my children to confirm to all the ways of society, I want them to create their own path, and I want them to do it with grace and love. I just didn't want this to be one of the paths they created...I guess Sawyer had other plans, or well God did.
Unfortunately it looks as if we will be in here for quite some time, something I'm OK with right now especially with what is going on in the world right now. Sadly that means not being able to see the other kiddos much at all...I can't risk the chance for infection with Sawyer right now. His counts are at 0 and as much as they are hoping they rise quickly it is not looking promising right now. I honestly feel his body is fighting so hard to heal all the other things that have popped up(mouth and bottom sores, fevers, pneumonia) that it is not making enough white and red blood cells to keep up with all the healing it needs. But he is fighting and has promised me he is fine every day, he always tells me he is fine and that I can stop worrying.
Like I have said many times Sawyer is amazing as hard as his days are as much as he asks me everyday when will I get better he still tries to smile, laugh and he always reminds me that we need to pray. He prays all day long, he tells me its what he does when he breathes his focused breathing. He is an absolute inspiration everyday to me to keep my faith even when the days are looking dark. Sitting here listening to him breathing how difficult it is for him right now, my eyes constantly diverting from the monitors to him I find a solace in the little things I can do for him, I can wipe his nose(we have gone through 4 boxes of tissues since Saturday its only Wednesday) I can help him with his mouth care and scratching every itchy spot, and I can hold his hand when he needs me(mostly its for me lets be real, I need it) and I can watch him and his numbers. I know they probably think I'm crazy but I don't often give them an inch, I ask questions, I read, I listen, I make sure they are giving him the best attention they can, sadly he has become a one on one for any nurse and the Dr's make his room the last room(truthfully he is on isolation and you can only enter his room with a gown and a mask on)because they spend a good 45 minutes with us everyday.
Through all of this I realize I do not often mention all that Jaime does for all of us....Jaime is another hero, he is showing up, working at the farm, bringing dinners, washing laundry, getting us all the things we need to make it through our days, he's here supporting, talking to us, making everyone laugh(its what he does all the time), and he helps Sawyer just knowing he is there helps Sawyer feel safe. Jaime has been here for everything he is doing so much more than I am right now, he is running back and forth, making sure life outside of the hospital is still going on....its the one thing he knows I struggle with. I can't leave the hospital because my heart is so pulled in both directions...I didn't want to leave on Saturday to come back because I knew it would be for a long stay and saying goodbye is the hardest part for me(I hate good byes). Leaving for me right now means I have to leave my other babies all over again and selfishly my heart just can't handle it right now.
So when I say I hate cancer I truly mean I hate cancer and everything it does to a human, a family, friends, and everyone along the way it comes in contact with. I hate watching this horrible disease consume everyone and everything that is in its path, I hate how it has mad me a terrible mother and how it has taken so much from my children. I hate how it is taking over my sons body, how hard he is fighting to just exist, and I hate that any child any adult any human has to ever experience this disease. But as I stated before...as many times as the devil whispers you can't handle the storm....we are all fighting back saying we are the storm. In our world right now of uncertainty and so much fear and anxiety never forget that you are stronger than you know. Stay healthy and safe my friends until next time.
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