Well, it is time for a much overdue update for Evan's blog! I have been posting little updates on my facebook status and have kind of neglected his blogspot, evangimmakaupdates.blogspot.com I don't really remember just where we left off, but I will give a highlight of the past year or so.
As of January 2011, Evan completed 8 rounds(which took one year) of oral and IV chemotherapy. This was all new to me and to Evan. I struggled with doing the oral chemo at home, but we did it. So many precautions I had to do to protect myself and the rest of our family. It made Evan so sick and he would do a lot of sleeping on those oral chemo days here at home.
He had all of his IV chemo treatments in Kadlec Hospital in Richland, through Seattle Children's Hospital. Probably one of the worst side affects from his IV chemo was that his knee and ankle joints would hurt so bad. After he had been sitting or sleeping for awhile, he would tell me that his leg was broken. He would and still does walk stiffly after he gets up from a nap or has been sitting for awhile.
In May of 2011 he had outpatient surgery to have his port removed. He was so happy! He told us over and over again......"No more chemo.....see? No more port!"
He had an MRI in March and it showed no change in the tumor size. It is still the size of a golf ball. We also had some testing done on his eyes. He has no vision in his left eye and has 20/25 acuity vision in his right eye with no peripheral vision. The doctor said it would be like looking through a paper towel tube, which really explains why he frequently asks me for his fork when it is right next to his plate. He just can't see it!
His next MRI is supposed to be sometime in June. We don't have an exact date yet.
Children's Hospital in Seattle has been great to work with and they have made great efforts in getting their new wing set up at Kadlec Hospital in Richland. This has been a huge blessing for us so that we don't have to travel quite so far for his MRI's, bloodwork and chemo. We still make every other trip for his MRI's and eye tests in Seattle and the other ones are in Richland at Kadlec.
For right now, the plan is to do MRI's every 3 months to monitor the tumor. If there should be a change in the tumor showing growth, then the oncologist said that we would be looking at some form of radiation.
Through all of this, we continue to see God at work in Evan's little life! He is such a shining example for us! If he ever says anything about the pain that he is in, he doesn't dwell on it and just moves on with his little life! We continue to pray that God will heal him, but for now, God has pretty much comforted us with the fact that "His Grace is Sufficient"!
We have been so humbled by so many people's prayers, concern, encouragement and blessings to us! We pray that God will return this 100 fold back to you! Blessings to you all!
Thursday, May 5, 2011
Wednesday, September 15, 2010
September 2010
A much overdue update for Evan. I'm so sorry for not having posted updated posts for Evan.
Evan continues to have some form of chemotherapy every 2 weeks. One week he does oral chemo for 3 1/2 days, two weeks later we go to Richland Kadlec Hospital for IV chemo done through his port and two weeks later we repeat the IV chemo through his port at Richland Kadlec Hospital.
The last two oral chemo doses have really been hard for Evan (and me!). He has increased in vomiting and vomits until at least 6 hours after his last dose.
The last two IV chemo treatments through his port have increased symptoms of severe stiffness in his ankles and/or knees. Evan frequently tells me, as he struggles to walk, that his knee or leg is broken. His skin also seems to be really sensitive to touch and he really lets us know when we bump him causing him intense pain, like pins and needles on the outside of his skin.
In spite of all the "bad" stuff, overall Evan continues to have such a sweet spirit and attitude! (Something God has been showing me!) He smiles and laughs easily.
Evan has an MRI scheduled for Friday morning at Seattle Children's Hospital, followed by an appointment with his oncologist. After that, the plan is to pick up his next round of oral chemo from the pharmacy and head home.
Each day God gives us is a blessing and we continue to learn to live life with a grateful heart making each activity, conversation and attitude a life-giving, God glorifying experience. We fail often, but it does seem to me that little by little we are learning to do this more and more.
I can't remember if I posted this in the past or not, so I'll do it again for good measure.....:) We have closed Evan's donation account to Chase Bank, as they were withdrawing monthly charges out of his account. Currently, the only account we have open is the one through Bank of Whitman.
Thank you for everyone's continued love, prayers, encouragement and support!! We know and feel God's Loving Arms wrapped around each of us and our home! May God be totally glorified in and through our lives and home!
Blessings,
David and Trena
Evan continues to have some form of chemotherapy every 2 weeks. One week he does oral chemo for 3 1/2 days, two weeks later we go to Richland Kadlec Hospital for IV chemo done through his port and two weeks later we repeat the IV chemo through his port at Richland Kadlec Hospital.
The last two oral chemo doses have really been hard for Evan (and me!). He has increased in vomiting and vomits until at least 6 hours after his last dose.
The last two IV chemo treatments through his port have increased symptoms of severe stiffness in his ankles and/or knees. Evan frequently tells me, as he struggles to walk, that his knee or leg is broken. His skin also seems to be really sensitive to touch and he really lets us know when we bump him causing him intense pain, like pins and needles on the outside of his skin.
In spite of all the "bad" stuff, overall Evan continues to have such a sweet spirit and attitude! (Something God has been showing me!) He smiles and laughs easily.
Evan has an MRI scheduled for Friday morning at Seattle Children's Hospital, followed by an appointment with his oncologist. After that, the plan is to pick up his next round of oral chemo from the pharmacy and head home.
Each day God gives us is a blessing and we continue to learn to live life with a grateful heart making each activity, conversation and attitude a life-giving, God glorifying experience. We fail often, but it does seem to me that little by little we are learning to do this more and more.
I can't remember if I posted this in the past or not, so I'll do it again for good measure.....:) We have closed Evan's donation account to Chase Bank, as they were withdrawing monthly charges out of his account. Currently, the only account we have open is the one through Bank of Whitman.
Thank you for everyone's continued love, prayers, encouragement and support!! We know and feel God's Loving Arms wrapped around each of us and our home! May God be totally glorified in and through our lives and home!
Blessings,
David and Trena
Friday, April 30, 2010
April 30, 2010 Update
David and I left for Seattle on Tuesday for Evan's appointments on Wednesday. Evan's 1st appointment was a blood draw, which normally is not a big thing. They just have to access his port and draw the blood samples from there. But, for some reason, it wasn't an easy task this time. The nurse had a terrible time getting the needed blood to check everything they check each time. After several attempts, she was finally able to get the needed amount of blood. Evan was very upset by this time. This hasn't ever happened before and I pray that it doesn't happen again. It was hard on Evan and also hard on me.
Evan's next appointment was to have his eyes checked and, of course, they needed to dialate his eyes. Since the day didn't start out very well with the blood draw, I think Evan was a little easier agitated than he normally would have been. He has had his eyes dialated before and has never had that much problem with the procedure. The concluding prognosis was that Evan's vision has gotten worse in his left eye (his bad eye) and it looks like maybe his left eye is not as mobile and not tracking like it normally would; and maybe a bit worse in good eye, vision wise. The dr. looked at his optical nerve also and said that the nerve to the left eye doesn't show any color to it (as in pink meaning life and gray having no life or circulation). The optical nerve to his good eye showed some pink on the outside of the nerve but had gray lifeless color in the center.
The next appointment was with his oncologist. He looked at the lab work and said that everything looked good enough to start his 3rd round of Chemo. He checked him over and thought he looked good. Right after he left the room another dr. came into the room to look at Evan's shunt. In a nutshell, everything was a "green light" for us to begin his 3rd round of Chemo.
We headed to the pharmacy to pick up the prescription of oral Chemo. This was just not a quick trip to the pharmacy and then on our way home. We waited atleast 90 minutes for the prescription to be filled. By the time we were out to the car to head home, Evan was ready for a nap!
On our way home, Evan got sick and vomited in the car. This was not chemo related as he had not been given any yet. So, he must have gotten some flu bug. Anyway, he has been fine today and I started giving him his oral Chemo tonight. I would appreciate your prayers especially during the next few days for Evan and also for me. This part of the round of chemo is where vomiting takes place. I don't do vomit very well and it is a struggle for me to clean up, plus the chemo has to be given at 6 hr. intervals around the clock for 4 days.
God's peace, grace and strength continue to encompass us as we travel this journey. We are so thankful for wonderful family and friends that encourage, support and pray for us! It is priceless! May God be glorified mightily in all that we do, think and say!
Blessings,
David and Trena
(Here are some pictures of Evan living life. Please do not pay attention to the date on the pictures as they are not correct, at least the ones that say 2007 *smile*)
Evan's next appointment was to have his eyes checked and, of course, they needed to dialate his eyes. Since the day didn't start out very well with the blood draw, I think Evan was a little easier agitated than he normally would have been. He has had his eyes dialated before and has never had that much problem with the procedure. The concluding prognosis was that Evan's vision has gotten worse in his left eye (his bad eye) and it looks like maybe his left eye is not as mobile and not tracking like it normally would; and maybe a bit worse in good eye, vision wise. The dr. looked at his optical nerve also and said that the nerve to the left eye doesn't show any color to it (as in pink meaning life and gray having no life or circulation). The optical nerve to his good eye showed some pink on the outside of the nerve but had gray lifeless color in the center.
The next appointment was with his oncologist. He looked at the lab work and said that everything looked good enough to start his 3rd round of Chemo. He checked him over and thought he looked good. Right after he left the room another dr. came into the room to look at Evan's shunt. In a nutshell, everything was a "green light" for us to begin his 3rd round of Chemo.
We headed to the pharmacy to pick up the prescription of oral Chemo. This was just not a quick trip to the pharmacy and then on our way home. We waited atleast 90 minutes for the prescription to be filled. By the time we were out to the car to head home, Evan was ready for a nap!
On our way home, Evan got sick and vomited in the car. This was not chemo related as he had not been given any yet. So, he must have gotten some flu bug. Anyway, he has been fine today and I started giving him his oral Chemo tonight. I would appreciate your prayers especially during the next few days for Evan and also for me. This part of the round of chemo is where vomiting takes place. I don't do vomit very well and it is a struggle for me to clean up, plus the chemo has to be given at 6 hr. intervals around the clock for 4 days.
God's peace, grace and strength continue to encompass us as we travel this journey. We are so thankful for wonderful family and friends that encourage, support and pray for us! It is priceless! May God be glorified mightily in all that we do, think and say!
Blessings,
David and Trena
(Here are some pictures of Evan living life. Please do not pay attention to the date on the pictures as they are not correct, at least the ones that say 2007 *smile*)
Saturday, April 3, 2010
April 3, 2010 Update
We have had the cold/coughs in our home this past week or so. Evan was doing really well for not getting sick until Thursday. By Friday evening he had a rising temperature. In his "notebook" that we received from Children's Hospital, it gave specific special guidelines to what to do when your child has a fever. It is a lot different due to the fact that the child that is being given chemo cannot have a very high temp plus they don't want you to give any Tylenol or pain reliever. His temp kept rising yesterday evening so I made that phone call to the oncologist on call at Seattle Children's Hospital. We monitored it for a couple of hours and it was gradually rising. When I called the oncologist-on-call from Seattle, he told me to take him into Kadlec Hospital in Richland and get him checked out. So, I packed a suitcase (I didn't know if it would be a quick trip or if he would have to stay there) and we left the house around 9 p.m.
After many kinds of tests and x-rays, it was determined that Evan had pneumonia. The protocol was to put him on oral antibiotics and send him home. We got home just a few minutes before 4 a.m.
When I first called the oncologist over in Seattle, I started experiencing a spirit/feeling of being overwhelmed and just felt like crying and crying. I sent a quick text message to some people, and I know Evan and I were immediately lifted to God's Throne! It was absolutely amazing the peace and grace we experienced before we even left for the hospital! God is so good and so faithful! Evan was calm and so was I!
Monday, we still plan to go to Kadlec Hospital for his IV Chemotherapy, that is, unless they decide to hold off until he is completely well.
Thank you so much for your continued love, prayers, support, and encouragement! May God continue to use us for His Glory!
Blessings,
David, Trena
& family
After many kinds of tests and x-rays, it was determined that Evan had pneumonia. The protocol was to put him on oral antibiotics and send him home. We got home just a few minutes before 4 a.m.
When I first called the oncologist over in Seattle, I started experiencing a spirit/feeling of being overwhelmed and just felt like crying and crying. I sent a quick text message to some people, and I know Evan and I were immediately lifted to God's Throne! It was absolutely amazing the peace and grace we experienced before we even left for the hospital! God is so good and so faithful! Evan was calm and so was I!
Monday, we still plan to go to Kadlec Hospital for his IV Chemotherapy, that is, unless they decide to hold off until he is completely well.
Thank you so much for your continued love, prayers, support, and encouragement! May God continue to use us for His Glory!
Blessings,
David, Trena
& family
March 20, 2010 Update
(This is late due to a tardy updater - namely, me...Blessings, Camille)
Ok........an update is overdue, once again! Lots going on and this is always a busy time of the year, especially with these nice days......makes one want to get outside and forget the inside chores and such.
Evan will go to Kadlec in Richland on Monday for an IV Chemo. I am thankful for the great staff that we have met there. Children's Hospital's extension to Richland has been a wonderful thing for us, so that we don't have to travel to Seattle quite so often.
Several people have asked me the chemo routine that Evan is on, so I will try to put it down here, in a nutshell, so to speak. Each 42 day cycle (6 weeks) is counted as a "Round". Below will be an example of a "Round" of chemo. Days 0-4 are oral chemo treatments 6 hrs apart around the clock........example - 6am....12pm....6pm....12am
Day 0 - 1st oral chemo at 6pm
Day 1 - Oral chemo at 12am.....6am....12noon....6pm
Day 2 - Oral chemo at 12am.....6am....12noon....6pm
Day 3 - Oral chemo at 12am.....6am....12noon....6pm
Anti-nausea meds taken 1 hour before each chemo dose 4x this day
Day 4 - Oral chemo at 12am
Anti-nausea meds taken 1 hour before this chemo, also.
Day 14 - IV chemo at Kadlec Hospital in Richland
Day 28 - IV chemo at Kadlec Hospital in Richland
We are currently in the 2nd Round of his chemo treatments, being on Day 14 as of Monday, the 22nd.
Evan has recently been accepted as a "Wishing Star Kid" through the Wishing Star Foundation. It is a small, local organization that does great things for families and children with serious and terminal illnesses. One week ago we had two volunteers come out and meet some of our family. They were really nice. You can learn more about this organization at www.wishingstar.org
God continues to provide us with grace, strength and His peace in all that we have done, are doing and, by faith, going to do! He has taken care of us in so many amazing ways and we are so thankful for His faithfulness, even in times of our unfaithfulness. Amongst the many blessings, God has provided us with many wonderful family members and friends, both old and new! Thank you so much for your encouragement, love, prayers, support and donations!!
We feel your prayers and love! May God continue to be glorified in and through our home in all that we do and say!
Blessings,
David, Trena
AND family
Ok........an update is overdue, once again! Lots going on and this is always a busy time of the year, especially with these nice days......makes one want to get outside and forget the inside chores and such.
Evan will go to Kadlec in Richland on Monday for an IV Chemo. I am thankful for the great staff that we have met there. Children's Hospital's extension to Richland has been a wonderful thing for us, so that we don't have to travel to Seattle quite so often.
Several people have asked me the chemo routine that Evan is on, so I will try to put it down here, in a nutshell, so to speak. Each 42 day cycle (6 weeks) is counted as a "Round". Below will be an example of a "Round" of chemo. Days 0-4 are oral chemo treatments 6 hrs apart around the clock........example - 6am....12pm....6pm....12am
Day 0 - 1st oral chemo at 6pm
Day 1 - Oral chemo at 12am.....6am....12noon....6pm
Day 2 - Oral chemo at 12am.....6am....12noon....6pm
Day 3 - Oral chemo at 12am.....6am....12noon....6pm
Anti-nausea meds taken 1 hour before each chemo dose 4x this day
Day 4 - Oral chemo at 12am
Anti-nausea meds taken 1 hour before this chemo, also.
Day 14 - IV chemo at Kadlec Hospital in Richland
Day 28 - IV chemo at Kadlec Hospital in Richland
We are currently in the 2nd Round of his chemo treatments, being on Day 14 as of Monday, the 22nd.
Evan has recently been accepted as a "Wishing Star Kid" through the Wishing Star Foundation. It is a small, local organization that does great things for families and children with serious and terminal illnesses. One week ago we had two volunteers come out and meet some of our family. They were really nice. You can learn more about this organization at www.wishingstar.org
God continues to provide us with grace, strength and His peace in all that we have done, are doing and, by faith, going to do! He has taken care of us in so many amazing ways and we are so thankful for His faithfulness, even in times of our unfaithfulness. Amongst the many blessings, God has provided us with many wonderful family members and friends, both old and new! Thank you so much for your encouragement, love, prayers, support and donations!!
We feel your prayers and love! May God continue to be glorified in and through our home in all that we do and say!
Blessings,
David, Trena
AND family
Saturday, March 6, 2010
March 5, 2010 Update
God is still on the throne no matter what happens!! Evan had his MRI yesterday at Children's Hospital in Seattle. The results weren't exactly what we were looking for, but it doesn't change anything in our trust in God! If anything, it even draws us closer to our Lord to trust Him in a still deeper way.
The MRI results stated that there was about 1-2mm growth in Evan's tumor. His oncologist told us that this was not real alarming to him, at this point, but it is definitely going to be something to watch when he has his next MRI in 3 months. He said that is there is continued growth then we will have to look at doing something different; meaning a change in doing a different, more aggressive chemo and/or radiation.
God's peace surrounds us in a magnificent way that words could never express! We are so thankful for the many prayers on Evan's behalf, and not to mention, our behalf! Thank you so much!
We will start Evan's oral Chemo tonight. His next IV treatments are already set up in Richland, Kadlec Hospital, for the middle and end of this month.....2 weeks apart.
Our continued prayer is that God would be mightily glorified in all that we do, say and think in our home and through our lives!
Blessings,
David and Trena
The MRI results stated that there was about 1-2mm growth in Evan's tumor. His oncologist told us that this was not real alarming to him, at this point, but it is definitely going to be something to watch when he has his next MRI in 3 months. He said that is there is continued growth then we will have to look at doing something different; meaning a change in doing a different, more aggressive chemo and/or radiation.
God's peace surrounds us in a magnificent way that words could never express! We are so thankful for the many prayers on Evan's behalf, and not to mention, our behalf! Thank you so much!
We will start Evan's oral Chemo tonight. His next IV treatments are already set up in Richland, Kadlec Hospital, for the middle and end of this month.....2 weeks apart.
Our continued prayer is that God would be mightily glorified in all that we do, say and think in our home and through our lives!
Blessings,
David and Trena
Wednesday, February 24, 2010
Jan/Feb Update 2010
Evan had his 1st IV Chemotherapy in Richland this last Monday, the 15th. It went well and he is scheduled to do all future IV Chemo treatments at Kadlec Hospital in Richland, rather than Seattle. We have appointments set up in Seattle on March 5 for an MRI and blood work. We will then pick up Evan's oral chemo meds for the 2nd round of chemo. The oral meds is the worst part of each 6 week round for Evan. He gets really sick and last time he spent those 3 plus days vomiting and sleeping excessively.
His Chemo routine is based on a 6 week schedule with Days 1 - 2 - 3 and part of 4th day being given oral chemo every 6 hrs round the clock. Day 14 is the IV Chemo and it is administered at Kadlec after routine blood work is drawn. Day 28 is the last IV Chemo at Kadlec Hospital after routine blood work. The end of this round is on Day 42 and then another round starts with Day 1....etc....At the beginning of each round we make an overnight trip to Seattle to see his oncologist, do blood work and pick up his oral chemo meds for the next round. Every other time we will be scheduled for an MRI. The plan is to do this for one year.
We are getting copies of Evan's blood work results each time and quite truthfully, it is distressing to see his blood counts decrease and also his weight dropping little by little. The dr. and nurses don't seem to be too overly concerned with these stats, but they do concern me.
I would be putting up a front if I said, "All is well.....Evan and we are doing great." Peace of heart and mind have been a struggle, so I ask that you continue to remember us in your thoughts and prayers. God's got a plan - it's just that right now I don't understand it and/or may even be in denial that this might be the path we are to walk down. I do know that my heart aches like it probably never has before. Words cannot describe the waves of emotion as our son is being given such powerful chemicals/meds knowing that our hands are tied. It's a helpless feeling of not knowing how to comfort your child and feeling guilty for allowing this to happen.
But I have to remember God has a plan and sees the bigger picture. So hard to do, but a walk/journey that takes a lot of faith. Ultimately, we know we serve an AWESOME God that does love and care for us. I do know that, although sometimes my emotions tell me differently. (Maybe kind of like a child that gets into trouble and may not feel like his parents love him or maybe like a child that wants to do one thing and the parent tells him, "No, we are going to do this.")
So.....it's not about us but about bringing Glory to the Lord of Lords and King of Kings. Sometimes (actually, a lot of times) we get so wrapped up in our lives here on earth that we forget this life here on earth is just a layover, and that our final destination is HEAVEN. I need to remind myself of this more often.
Despite all the chemo, Evan continues his natural vitamins and herbs. Thank you for your continued support in prayers, donations, friendship, love and encouragement. May God glorify Himself in and through our lives and home!
Blessings,
David and Trena
His Chemo routine is based on a 6 week schedule with Days 1 - 2 - 3 and part of 4th day being given oral chemo every 6 hrs round the clock. Day 14 is the IV Chemo and it is administered at Kadlec after routine blood work is drawn. Day 28 is the last IV Chemo at Kadlec Hospital after routine blood work. The end of this round is on Day 42 and then another round starts with Day 1....etc....At the beginning of each round we make an overnight trip to Seattle to see his oncologist, do blood work and pick up his oral chemo meds for the next round. Every other time we will be scheduled for an MRI. The plan is to do this for one year.
We are getting copies of Evan's blood work results each time and quite truthfully, it is distressing to see his blood counts decrease and also his weight dropping little by little. The dr. and nurses don't seem to be too overly concerned with these stats, but they do concern me.
I would be putting up a front if I said, "All is well.....Evan and we are doing great." Peace of heart and mind have been a struggle, so I ask that you continue to remember us in your thoughts and prayers. God's got a plan - it's just that right now I don't understand it and/or may even be in denial that this might be the path we are to walk down. I do know that my heart aches like it probably never has before. Words cannot describe the waves of emotion as our son is being given such powerful chemicals/meds knowing that our hands are tied. It's a helpless feeling of not knowing how to comfort your child and feeling guilty for allowing this to happen.
But I have to remember God has a plan and sees the bigger picture. So hard to do, but a walk/journey that takes a lot of faith. Ultimately, we know we serve an AWESOME God that does love and care for us. I do know that, although sometimes my emotions tell me differently. (Maybe kind of like a child that gets into trouble and may not feel like his parents love him or maybe like a child that wants to do one thing and the parent tells him, "No, we are going to do this.")
So.....it's not about us but about bringing Glory to the Lord of Lords and King of Kings. Sometimes (actually, a lot of times) we get so wrapped up in our lives here on earth that we forget this life here on earth is just a layover, and that our final destination is HEAVEN. I need to remind myself of this more often.
Despite all the chemo, Evan continues his natural vitamins and herbs. Thank you for your continued support in prayers, donations, friendship, love and encouragement. May God glorify Himself in and through our lives and home!
Blessings,
David and Trena
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