For those of you who were not able to attend the funeral I shared a poem that I wrote for Bryce as a gift this past Christmas. I am not a poet, but felt very inspired as I wrote this poem. It was amazing to me how the words flowed to me and how quickly I was able to compose it. At the end of the poem it almost seems prophetic to me.
A Poem from a Father to his Son
The Father loved all of His spirit children beyond measure;
And thus it was His desire to provide them with a great treasure.
Not a treasure of precious jewels, silver or gold;
No this was much, much greater – something very bold.
In that first estate a Grand Council was called for all of His children to meet;
And when they were all gathered together each took their seat.
Each child anxiously waited to hear what the Father would say;
He presented His Great Plan of Happiness to His children on that day.
When asked whom to send, the Son of Man answered, ‘Here am I, send me’
Another also answered to be sent, but his plan was selfish, which the Father did see.
The Father said he would send the first, which to most of His children was a delight;
The second was angry and rebelled and was cast out of God’s sight.
Each spirit child then faced an eternal decision of who he or she would follow;
When a third rebelled against Father it must have been difficult for us to swallow.
We chose to follow the Father and received a promise that we would ‘be added upon’;
And if we kept our second estate the Father said that all He had would be ours for which we longed.
Lucifer then became the devil and destroying man’s agency is what he sought;
He and his followers then caused a great war in heaven that had to be fought;
The firstborn son, Jehovah, and Michael, were chosen as leaders on the Father’s side;
And the noble and great ones joined them in the fight against evil and to turn the tide.
My son, Bryce, you were among the noble and great ones in this pre-earth life;
You were a faithful and valiant spirit son of the Father and helped in this strife.
As a valiant son you were foreordained to come down to earth;
With great promises given to you of the Father because you were of great worth.
You chose in the beginning to live a life that would be very hard;
And you were willing to do so because you could bless others in this regard.
You chose to be born to a mother and father who would love you very much;
With two wonderful sisters with whom you could also get in touch.
The Father reserved you to be born in the final dispensation of time;
To also be born in America, the land of liberty, was very sublime.
The Father also blessed you to be born in a family that had the Gospel of Christ;
And you have been taught since you were a young a child of His terrible great price.
What a great joy and blessing your mother and father received;
When they learned to them a boy would be born that they conceived.
You were a beautiful baby boy with thick dark hair;
You were truly an answer to your mother and father’s prayers.
Then to our dismay at nine months of age our baby boy got very sick;
We took you to doctors and specialists for treatment and we did so very quick.
They took you from us as we sat in the waiting room;
We could hear your cries of pain and we were filled with such gloom.
Finally after what seemed forever they brought you out soaking wet from tears;
We hugged you tightly as we offered many prayers.
A diagnosis of kidney failure due to post-urethral valves is what we were told;
And a future kidney transplant would be required for our little boy as he got old.
We felt if we could only show enough faith that Heavenly Father would heal our son;
But in the end we had to say that God’s will be done.
At age two your kidney function went downhill;
And the requirement for a kidney transplant began to look real.
Your mother and father were both tested to see who could donate to you;
Your father was rejected, which left it up to your mother to do.
She willingly sacrificed for her son who was her love;
Your mother trusted in God who was our Father above.
Many prayers were offered, priesthood blessings and fasting too;
In preparation for the surgeries that awaited both of you.
The day of the transplant, December 13th, 1985, finally came;
Your father hugged you and your mother as you were taken to the OR that day.
Kidney rejection for you and toxic shock for Mom;
This was very difficult for your father to have you both in the ICU and remain calm.
Your father in desperation and grief to the chapel he went;
For he felt that his faith was all but spent.
It was during this extremely difficult time that a new trust of God was born;
For in my pain and sorrow I learned there was a Father that I could adorn.
A new favorite scripture became mine of which I could impart;
This scripture taught me to ‘Trust in the Lord with all of my heart.’
The kidney sadly never really did work and after five weeks was finally removed;
Dialysis was then started and the following August a second transplant was approved.
This kidney didn’t work well and was taken out after a number of weeks;
We were all very sad and had tears run down our cheeks.
Four years of hemo- or peritoneal dialysis resulted in many ills;
Just thinking about it again brings back many chills.
On the way home from a difficult day of dialysis the question was posed;
‘Daddy, why do I have to go through such pain?’ is what you disclosed.
I told my little boy I didn’t know why you had to suffer such pain;
God loved you so much and you were blessed more than many others I tried to explain.
Shortly after this your little sister, Heidi, offered for you a prayer;
That you would receive a new kidney – is what she declared.
Following that prayer you simply said, Dad, it is okay if I don’t get a kidney today;
As you told me before I have been blessed in so many ways.
A short time later in June 1990 your father received a new call;
I was called to serve on the stake high council with them all.
A setting apart and blessing were given by President Wally Nielsen on a Tuesday night;
In that blessing you were blessed to receive a kidney and that you would be alright.
On Saturday morning, less than four days later, a kidney donor for you was found;
After waiting for two years for a kidney this whole experience was very profound.
The kidney worked well for a short time, but then terrible rejection once again set in;
A trip to Pittsburgh Children’s Hospital for an experimental drug was planned then.
However, it was cancelled because you became too sick to go;
At the time this seemed to us to be one more terrible blow.
We still trusted in our Heavenly Father’s care;
Through His tender mercies we didn’t despair.
A great miracle took place shortly afterwards for you;
Our Father reversed the rejection and you were soon home again it is true!
The kidney you received 18 years ago from a drowned little boy;
Continues to function well which brings us much joy.
The years have gone by with continuing adversities for our son;
And seeing him filled with pain and sorrow has also hurt us a ton.
Yet we continue to know that God loves our dear Bryce,
He will bless our dear son with compensatory blessings that will be so nice.
Satan still desires to destroy you from the war fought before;
Please keep the armor of God about you and you will be protected by the Lord.
At this Christmas time we know that life for you is still very tough;
We continue to pray to Father for it to be finally enough.
Yet we feel such gratitude that you are still here with us;
For we know that God has given us this wonderful plus.
We thank you for the trust you have placed in God through these difficult times;
The blessings will come as promised and recorded in these rhymes.
You will find great happiness and joy in this life;
We know you will be blessed in the future with a wonderful family and wife.
Please continue to be faithful to live your life in the right way;
And remember that it is to a loving Father to whom you pray.
The day will come in the future that you will return to our first home;
And then you will remember the beginning as recorded in this poem.
You will then know it was worth the sorrow and the pain;
For the incomprehensible blessings you will then gain.
Our Father in Heaven will take you in his arms with love;
And you will feel the immeasurable love and joy from above.
With all of my love,
Your Earthly Father
Bryce's Funeral (June 15, 2009)
We greatly appreciate all of the love and support that we have received from you during the passing of our son. The funeral was a great spiritual experience for us and we feel at peace. It is still hard to believe that Bryce is really gone and we miss him, but oh how grateful we are that he is no longer suffering.
We appreciate all of you that were able to attend the funeral and/or viewing. We know many of you due to schedules or travel distance were unable to attend.
We appreciate all of you that were able to attend the funeral and/or viewing. We know many of you due to schedules or travel distance were unable to attend.
Bryce's funeral was very nice. There are a lot of people that will love and honor him forever.
Click on the images below to enlarge. Bryce's program was printed in black and white on photo paper, then folded into thirds. The cover (shown below on the blue matte) was printed in color.
Click on the images below to enlarge. Bryce's program was printed in black and white on photo paper, then folded into thirds. The cover (shown below on the blue matte) was printed in color.
Bryce's Obituary
Bryce Kameron Moss
(3KT)
1983 ~ 2009
Bryce was born on May 9, 1983 and passed away June 11, 2009 after a valiant fight against cancer. He faced difficult challenges with great courage his entire life.
He was a great blessing to his parents and sisters who greatly loved him. His sweetheart, Jerica, to whom he recently got engaged, was his best friend and a God-sent angel to help him during the final battles of his life.
Bryce was the recipient of three kidney transplants (ages 2, 3, 7). He was blessed to keep his last transplant for the last 19 years.
He was a man with a big heart, who truly cared about people and listened to their problems. He was always kind and polite - even through suffering severe pain.
Bryce was a faithful member of The Church of Jesus Christ of Latter-day Saints. He can truly say: "I have fought a good fight, I have finished my course, I have kept the faith."
Survived by: parents, Ken and Kendra Moss; sister, Alisha (Brandon); sister, Heidi (Morgan); fiancé, Jerica; and nieces and nephew, Hailey, Abigail, and Corbin; grandparents Robert and Roberta Moss; Neldon Holt. Preceded in death by grandmother, Joline Holt.
Funeral services will be held Monday, June 15, 2009 at 11:00 a.m. in the Sandy Midvalley Stake Center, 1106 East 8055 South. A viewing will be held Sunday from 6:00 - 8:00 p.m. at the Larkin Sunset Gardens Mortuary (1950 E. 10600 South) and prior to the funeral at 9:30 – 10:30 a.m. Interment, Larkin Sunset Gardens Mortuary
(3KT)
1983 ~ 2009
Bryce was born on May 9, 1983 and passed away June 11, 2009 after a valiant fight against cancer. He faced difficult challenges with great courage his entire life.
He was a great blessing to his parents and sisters who greatly loved him. His sweetheart, Jerica, to whom he recently got engaged, was his best friend and a God-sent angel to help him during the final battles of his life.
Bryce was the recipient of three kidney transplants (ages 2, 3, 7). He was blessed to keep his last transplant for the last 19 years.
He was a man with a big heart, who truly cared about people and listened to their problems. He was always kind and polite - even through suffering severe pain.
Bryce was a faithful member of The Church of Jesus Christ of Latter-day Saints. He can truly say: "I have fought a good fight, I have finished my course, I have kept the faith."
Survived by: parents, Ken and Kendra Moss; sister, Alisha (Brandon); sister, Heidi (Morgan); fiancé, Jerica; and nieces and nephew, Hailey, Abigail, and Corbin; grandparents Robert and Roberta Moss; Neldon Holt. Preceded in death by grandmother, Joline Holt.
Funeral services will be held Monday, June 15, 2009 at 11:00 a.m. in the Sandy Midvalley Stake Center, 1106 East 8055 South. A viewing will be held Sunday from 6:00 - 8:00 p.m. at the Larkin Sunset Gardens Mortuary (1950 E. 10600 South) and prior to the funeral at 9:30 – 10:30 a.m. Interment, Larkin Sunset Gardens Mortuary
June 11, 2009
Our Heavenly Father in His tender mercies answered our prayers that Bryce would be taken quickly and would no longer suffer. He passed away much quicker than we anticipated, which is a blessing. Bryce passed away at 5:55 p.m. today. Although this is extremely difficult we all feel confident that the Lord's will has been done. Bryce is finally free from all pain and suffering. It was six weeks ago today that he was admitted to the hospital.
Bryce's need for oxygen and blood pressure medication continued to increase through the night and this morningthe surgeon met with us. She said our last hope was to take him to emergency exploratory abdominal surgery. The surgeon met with us in the waiting room and told us that the surgery went relatively well and it appeared that he was okay. However, we then found out that they had to take him back to surgery because he was bleeding extenstively - the reason was due to his liver failure he was not able to clot his blood. They did the best they could and put him back in shock trauma where they gave him Factor Seven, a very expensive medication that has the ability to clot the blood. We were able to see him while 5-6 nurses and doctors were working on him trying to save him and after seeing his traumatized body we asked that they stop all interventions. We felt that he had suffered enough and it was time for him to return home. They kept him sedated and gradually turned down the ventilator and the blood pressure medications. We chose not to be in the room as he looked so awful. He passed away about 15 minutes later.
As I mentioned in my updates the last couple of days Bryce was going through much confusion. However, last night and this morning he was very lucid. We had the sacred blessing of being able to say our good-byes. The first thing he said to his mother this morning when we got to the hospital was: "Mom, I want to go home. Can I go home now?" This choked us up and we now believe that he was talking about going home to Heavenly Father.
Our daughters, Alisha and Heidi, were trying to arrange babysitting for their children and the original plan was for them to take turns being at the hospital. We feel that Heidi was inspired to invite their cousin, Val, to come to the home this morning to watch the kids so that they could both be at the hospital. What a great blessing it was to have Alisha, Heidi, Jerica, Kendra and I with Bryce prior to surgery to tell him that we loved him and to say good-bye to him before surgery - we knew that there was a great risk that Bryce would not survive surgery. Bryce expressed his love for each of us which was so tender.
As I mentioned in one of the previous updates there have been times in the past that the relationship between Bryce and I has been strained. This morning I told him how much I loved him and how grateful I was to be his father. He replied back of how much he loved me and thanked me for being his Dad. Although he has told me that he loved me many times throughout his life - this was particularly touching to me. Then he added: "Dad, I know you have gone through a lot for me and I really appreciate it." I cannot express how I cherish his words!
As an example of Bryce's faith - we told him that he needed to have surgery and our concerns about the seriousness of it - he responded "then let's have a prayer." With Dr. Alonso, the surgeon present, I asked Bryce if he was okay with surgery and had any questions. He then asked all of us to leave, except Jerica, and they met alone with the surgeon. Bryce asked Jerica if she was okay with the surgery and she said yes and he replied, then so am I. He was always thinking of her and wanting her involved in the decisions.
Dr. Alonso told us when we met with her that we felt it was time to let him go and to stop any further medical interventions. She told us how touched they were by Bryce. She said that they were shocked that Bryce survived the first few days when he was admitted six weeks ago and how resilent he was and what a fighter he was. As the Apostle Paul said: "I have fought a good fight, I have finished my course, I have kept the faith." Truly Bryce fought a good fight throughout his life of adversity. Through this six-week trial he was purified and we feel that he is prepared to meet our Savior! What a blessing and privilege it has been to have Bryce as our son.
We are so grateful for all of your prayers for Bryce and our family - please be assured that although we wanted Bryce to live and marry Jerica that we truly do believe that the Lord knows what is best and that His will has been done.
We have a lot of faith and hope in a statement that Elder Joseph B. Wirthlin said in General Conference in October 2008: "The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
Love,
Ken and Kendra
Bryce's need for oxygen and blood pressure medication continued to increase through the night and this morningthe surgeon met with us. She said our last hope was to take him to emergency exploratory abdominal surgery. The surgeon met with us in the waiting room and told us that the surgery went relatively well and it appeared that he was okay. However, we then found out that they had to take him back to surgery because he was bleeding extenstively - the reason was due to his liver failure he was not able to clot his blood. They did the best they could and put him back in shock trauma where they gave him Factor Seven, a very expensive medication that has the ability to clot the blood. We were able to see him while 5-6 nurses and doctors were working on him trying to save him and after seeing his traumatized body we asked that they stop all interventions. We felt that he had suffered enough and it was time for him to return home. They kept him sedated and gradually turned down the ventilator and the blood pressure medications. We chose not to be in the room as he looked so awful. He passed away about 15 minutes later.
As I mentioned in my updates the last couple of days Bryce was going through much confusion. However, last night and this morning he was very lucid. We had the sacred blessing of being able to say our good-byes. The first thing he said to his mother this morning when we got to the hospital was: "Mom, I want to go home. Can I go home now?" This choked us up and we now believe that he was talking about going home to Heavenly Father.
Our daughters, Alisha and Heidi, were trying to arrange babysitting for their children and the original plan was for them to take turns being at the hospital. We feel that Heidi was inspired to invite their cousin, Val, to come to the home this morning to watch the kids so that they could both be at the hospital. What a great blessing it was to have Alisha, Heidi, Jerica, Kendra and I with Bryce prior to surgery to tell him that we loved him and to say good-bye to him before surgery - we knew that there was a great risk that Bryce would not survive surgery. Bryce expressed his love for each of us which was so tender.
As I mentioned in one of the previous updates there have been times in the past that the relationship between Bryce and I has been strained. This morning I told him how much I loved him and how grateful I was to be his father. He replied back of how much he loved me and thanked me for being his Dad. Although he has told me that he loved me many times throughout his life - this was particularly touching to me. Then he added: "Dad, I know you have gone through a lot for me and I really appreciate it." I cannot express how I cherish his words!
As an example of Bryce's faith - we told him that he needed to have surgery and our concerns about the seriousness of it - he responded "then let's have a prayer." With Dr. Alonso, the surgeon present, I asked Bryce if he was okay with surgery and had any questions. He then asked all of us to leave, except Jerica, and they met alone with the surgeon. Bryce asked Jerica if she was okay with the surgery and she said yes and he replied, then so am I. He was always thinking of her and wanting her involved in the decisions.
Dr. Alonso told us when we met with her that we felt it was time to let him go and to stop any further medical interventions. She told us how touched they were by Bryce. She said that they were shocked that Bryce survived the first few days when he was admitted six weeks ago and how resilent he was and what a fighter he was. As the Apostle Paul said: "I have fought a good fight, I have finished my course, I have kept the faith." Truly Bryce fought a good fight throughout his life of adversity. Through this six-week trial he was purified and we feel that he is prepared to meet our Savior! What a blessing and privilege it has been to have Bryce as our son.
We are so grateful for all of your prayers for Bryce and our family - please be assured that although we wanted Bryce to live and marry Jerica that we truly do believe that the Lord knows what is best and that His will has been done.
We have a lot of faith and hope in a statement that Elder Joseph B. Wirthlin said in General Conference in October 2008: "The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
Love,
Ken and Kendra
Comments
This is an excellent place for you to leave comments. Comments on this blog can be read by all of Bryce's family and friends. To leave a comment, click on the number next to the word "comments" at the top of any post.
June 10, 2009
It is after 12:30 a.m. and I just got home from the hospital - it has been another very emotional day. Bryce's blood pressure continued to drop and he was retaining more fluids. The decision was made to move him back to the shock trauma ICU. Although this was tough to see him taking a big step backwards we were grateful to have more attention given to him in his current medical situation. In fact, it is likely that this saved his life tonight.
In the ICU they placed an arterial line in his wrist, which among other things records his blood pressure onto a heart monitor. Anyway the nurse stepped out and I was watching the heart monitor and saw his systolic blood pressure gradually begin to drop from the high 90s into the 80s. When it started dropping into the 70s I immediately went to get some help. Surprisingly at that moment no nurses or doctors were around, which is very unusual as his room was by the nurses desk. It took a minute to get someone to come in and when they finally took action his blood pressure had dropped to 70/36. They immediately got some medication into his IV to raise his blood pressure. (Anyway if Bryce wouldn't have been in ICU with continuous blood pressure monitoring who knows what would have happened.) We went from having no one around to at one point having a couple of nurses and four doctors in the room assessing him. It was at this point that they placed an additional central line in Bryce to have additional access to his blood vessels.
It seems almost like déjà vu to be back in shock trauma ICU and see Bryce again retaining increased fluids - he has now gained an additional 45 lbs of excess fluids and is back on continuous dialysis. Fortunately he is not on a ventilator and he can communicate with us now, which he was very limited in before. (Bryce approved to have a short-term ventilator, if needed to save his life, but nothing long-term.)
His CT scan came back showing no abscesses in his abdomen, which is good news. The infectious disease doctor believes that since none of his blood cultures have shown anything that his continual low grade fever and higher white blood count are the result of either a general inflammatory response to his sickness or that the lymphoma is coming back. Hopefully tomorrow we will get the results of the liver biopsy, which hopefully will give all of us some answers.
Bryce is having more confusion the last two days and has now developed a tremor in his body - these are potential signs of additional liver failure.
He was in a lot of pain this evening, but as always this very special person continues to thank those who care for him and is always so polite. It has been so touching to us to observe this because we know that it is human nature to usually not be very kind to others when we don't feel well - particularly to those who cause us additional trauma through needle sticks, etc. I firmly believe that this affliction that Bryce has gone through has been purifying to his soul.
We had some sacred moments with him this evening as he expressed love to his family members. It was special as he asked if he could hold his grandmother's hand and held it for quite awhile. She wanting to give someone else an opportunity moved away and he asked, "Grandma, please hold my hand again." He expressed great love for his sister and said he was so grateful to have her as his sister. She needed to hear this and weeped. He expressed his love for Jerica and others.
Tonight when we went back to the hospital it was very hard to see him suffering as he appeared to be in a lot of pain. We know that the Lord can still heal Bryce and continue to feel that this still may be the Lord's will - knowing that sometimes the blessings do not come until after the trial of our faith. However, our main prayer continues to be that the Lord's will be done, that Bryce will not have to continue to suffer, and that whatever happens will happen quickly to end his suffering.
We continue to feel gratitude for the continuous love and support and prayers that we have felt from all of you.
In the ICU they placed an arterial line in his wrist, which among other things records his blood pressure onto a heart monitor. Anyway the nurse stepped out and I was watching the heart monitor and saw his systolic blood pressure gradually begin to drop from the high 90s into the 80s. When it started dropping into the 70s I immediately went to get some help. Surprisingly at that moment no nurses or doctors were around, which is very unusual as his room was by the nurses desk. It took a minute to get someone to come in and when they finally took action his blood pressure had dropped to 70/36. They immediately got some medication into his IV to raise his blood pressure. (Anyway if Bryce wouldn't have been in ICU with continuous blood pressure monitoring who knows what would have happened.) We went from having no one around to at one point having a couple of nurses and four doctors in the room assessing him. It was at this point that they placed an additional central line in Bryce to have additional access to his blood vessels.
It seems almost like déjà vu to be back in shock trauma ICU and see Bryce again retaining increased fluids - he has now gained an additional 45 lbs of excess fluids and is back on continuous dialysis. Fortunately he is not on a ventilator and he can communicate with us now, which he was very limited in before. (Bryce approved to have a short-term ventilator, if needed to save his life, but nothing long-term.)
His CT scan came back showing no abscesses in his abdomen, which is good news. The infectious disease doctor believes that since none of his blood cultures have shown anything that his continual low grade fever and higher white blood count are the result of either a general inflammatory response to his sickness or that the lymphoma is coming back. Hopefully tomorrow we will get the results of the liver biopsy, which hopefully will give all of us some answers.
Bryce is having more confusion the last two days and has now developed a tremor in his body - these are potential signs of additional liver failure.
He was in a lot of pain this evening, but as always this very special person continues to thank those who care for him and is always so polite. It has been so touching to us to observe this because we know that it is human nature to usually not be very kind to others when we don't feel well - particularly to those who cause us additional trauma through needle sticks, etc. I firmly believe that this affliction that Bryce has gone through has been purifying to his soul.
We had some sacred moments with him this evening as he expressed love to his family members. It was special as he asked if he could hold his grandmother's hand and held it for quite awhile. She wanting to give someone else an opportunity moved away and he asked, "Grandma, please hold my hand again." He expressed great love for his sister and said he was so grateful to have her as his sister. She needed to hear this and weeped. He expressed his love for Jerica and others.
Tonight when we went back to the hospital it was very hard to see him suffering as he appeared to be in a lot of pain. We know that the Lord can still heal Bryce and continue to feel that this still may be the Lord's will - knowing that sometimes the blessings do not come until after the trial of our faith. However, our main prayer continues to be that the Lord's will be done, that Bryce will not have to continue to suffer, and that whatever happens will happen quickly to end his suffering.
We continue to feel gratitude for the continuous love and support and prayers that we have felt from all of you.
June 9, 2009
Bryce had a very restless night last night; therefore, so did Kendra who stayed with him during the night. For me today he slept quite a bit. He continues to retain a lot of fluids and unfortunately they were unable to pull off any fluids when he had dialysis this evening because his blood pressure kept dropping. Typically Bryce receives about three hours of dialysis, but they were only able to give him two hours of dialysis.
Today Bryce did have the CT scan using the IV contrast and he also had a liver biopsy done. We are anxious to get the results of these two procedures. We should get the results of the CT scan tomorrow, but the biopsies may be up to three days for the pathologists to get us the results. Bryce seemed to have tolerated both procedures quite well.
He is having a fair amount of confusion again - probably due to multiple reasons as before. In the past the dialysis really helped with this. They plan to do dialysis again tomorrow.
Bryce's temperature today was either normal or slightly elevated, which is good. We were told wrong yesterday about his white blood count - it was actually 26,000 instead of 22,000. Today it was 22,000. We are concerned that his bilirubin has now gone into the 26 range - the highest that it has been.
We were able to have some short interactions with Bryce throughout the day, which is special for us. I continue to feel that it is a great privilege to help him by adjusting his position in bed, adjusting pillows, cleaning him, helping him in the bathroom, etc. Today I commended him for our polite he always is in saying "please" and "thank you". He looked at me and asked "what else am I supposed to do?" I replied, "just keep doing what you are doing."
We continue to take one day at a time and your support makes a huge difference in helping us to handle this adversity. In all of this we feel so greatly blessed and know that the Lord loves us.
(P.S. If you are interested we added a link in the blog of an article I wrote that was published in the Church News on the five-year anniversary of Bryce's third kidney transplant: http://www.prayforbryce.com/
Today Bryce did have the CT scan using the IV contrast and he also had a liver biopsy done. We are anxious to get the results of these two procedures. We should get the results of the CT scan tomorrow, but the biopsies may be up to three days for the pathologists to get us the results. Bryce seemed to have tolerated both procedures quite well.
He is having a fair amount of confusion again - probably due to multiple reasons as before. In the past the dialysis really helped with this. They plan to do dialysis again tomorrow.
Bryce's temperature today was either normal or slightly elevated, which is good. We were told wrong yesterday about his white blood count - it was actually 26,000 instead of 22,000. Today it was 22,000. We are concerned that his bilirubin has now gone into the 26 range - the highest that it has been.
We were able to have some short interactions with Bryce throughout the day, which is special for us. I continue to feel that it is a great privilege to help him by adjusting his position in bed, adjusting pillows, cleaning him, helping him in the bathroom, etc. Today I commended him for our polite he always is in saying "please" and "thank you". He looked at me and asked "what else am I supposed to do?" I replied, "just keep doing what you are doing."
We continue to take one day at a time and your support makes a huge difference in helping us to handle this adversity. In all of this we feel so greatly blessed and know that the Lord loves us.
(P.S. If you are interested we added a link in the blog of an article I wrote that was published in the Church News on the five-year anniversary of Bryce's third kidney transplant: http://www.prayforbryce.com/
Looking Back
I thought it might be neat to add an article that was in the Church News that I wrote on Bryce's five year anniversary of his kidney transplant.
You can read the article by clicking here.
You can read the article by clicking here.
June 8, 2009
This evening is one of the more difficult updates on Bryce I have had to write. It has been a very emotional evening with many tears shed. Although this is difficult I feel that it is therapeutic for me to try to write the feelings of my heart to share with you. I feel that you have been so supportive through all of this that it is appropriate to share my (our) tender feelings.
It seems that Bryce has really deteriorated in the last couple of days. It is amazing to me that just a couple of days ago he was doing relatively good and how quickly things can change. His appearance seems worse to us. He is retaining a lot of fluids - he has about 16 extra pounds of fluid on him now. They pulled off three liters of fluid from him yesterday during dialysis, but couldn't take any more because his blood pressure was dropping too much. He also now has fluid in his lungs and has pneumonia.
We are grateful that his white blood count has dropped to 22,000 from a high of 55,000 a couple of days ago. However, he continues to have a low grade fever. So far the blood cultures have not come back with any bacteria, but the infectious disease doctors are looking at changing his current antibiotics. His bilirubin has remained at 23 the last two days.
The CT scan yesterday was done with Bryce getting the contrast dye through his NG tube and wasn't very precise and consequently didn't show anything significant. The doctors have hesitated using IV contrast because it is likely to destroy his kidney, but they have reached the point that they need to do this to see what is going on to potentially save his life. They should do this CT scan tomorrow.
This evening one of the oncologists met with many of us to discuss the seriousness of Bryce's condition. He was very kind, but also very honest. He reviewed some history, which I will share a part of here. Since January they have been looking for this lymphoma because they suspected that Bryce had it, but it was so elusive. They did almost every test there is and did many cultures and biopsies and they all came back negative for lymphoma (only showed the Epstein Barr virus). They had been consulting with doctors all across the country trying to figure out what Bryce had. We were scheduled to go to the Mayo Clinic in May to see what they could determine. Finally one of the biopsies came back positive for lymphoma, but the pathologists said it was still hard to differentiate. They sent the sample to Massachusetts General Hospital to have it confirmed. It came back as T-cell lymphoma, which was about the time that Bryce went into liver failure.
With this history in mind the oncologists’ concern from the beginning was to know if the treatment was effective since this lymphoma had been so elusive. It is not like many cancers where there is a tumor and they can detect it shrinking following the treatment. The oncologist said the question he has is if the increased liver failure is the result of the lymphoma or is it the result of the chemo. All protocols that oncologists go by is not to give chemo when patients are in liver failure, but they felt they had no choice, if they were going to try to save his life. He said they may be able to tell what is going on by doing a liver biopsy, but wonder if it is worth the trauma to Bryce to do so. Tomorrow the doctors from the various services are going to discuss his situation.
We were grateful to have Jerica and her family with us this evening for this very sobering discussion. Afterwards we had a family prayer and humbly petitioned the Lord that if possible He would still heal Bryce - we have faith that He can do so. However, we humbly and very tearfully put Bryce in the Lord's hands and told Heavenly Father that we will accept His will. We know that it may be a great blessing for Bryce to pass on knowing that it is possible that his quality of life may not be very good after this.
We have so greatly admired Jerica's courage and tenacity through all of this. What a tremendous blessing she has been to both Bryce and to us! She and her family have been there with us through this entire ordeal as well as our family members and friends. What was most tender to us was after the prayer to see Jerica sit on the bed and hold Bryce and weep. Bryce asked that the rest of us leave the room and they were able to spend 30 minutes together. I know that this was a sacred time to this beautiful couple.
In sharing this we want you to know that we have not given up hope that Bryce can still be healed. We know that with the Lord all things are possible. However, we also realize very poignantly the seriousness of the situation. We continue to trust that He will do what is best for Bryce.
In 1990 when Bryce was seven years old he received his third kidney transplant. We believe that this was a great gift to him from Heavenly Father. He had suffered greatly with dialysis as a very young boy and had been on the transplant list for two years waiting for a kidney. At this two-year point I had just been called to serve on the stake high council and when the stake president set me apart he promised me in that blessing that Bryce would receive a kidney. Four days later we received the call that a kidney was available. We know that his was not a coincidence.
The kidney worked fairly well at first, but then Bryce went into serious rejection, just like he had with the two previous kidneys he had received. We then received approval to go to Pittsburgh Children's Hospital for Bryce to receive an experimental anti-rejection drug that potentially could still save the kidney. The night before we were to leave for Pittsburgh Bryce got ill and so the trip was postponed. Then through a wonderful miracle the Lord healed Bryce – he was home from the hospital just a few days later. The kidney has worked well for these last 19 years until this last month.
We know that just as the Lord turned things around completely and healed Bryce back in 1990 that He can do so again, if it is His will. We humbly ask that you continue to pray that Bryce will not have to suffer much longer and that if it is the Lord's will that he will heal him, but if not, that He will take Bryce quickly to Himself.
It seems that Bryce has really deteriorated in the last couple of days. It is amazing to me that just a couple of days ago he was doing relatively good and how quickly things can change. His appearance seems worse to us. He is retaining a lot of fluids - he has about 16 extra pounds of fluid on him now. They pulled off three liters of fluid from him yesterday during dialysis, but couldn't take any more because his blood pressure was dropping too much. He also now has fluid in his lungs and has pneumonia.
We are grateful that his white blood count has dropped to 22,000 from a high of 55,000 a couple of days ago. However, he continues to have a low grade fever. So far the blood cultures have not come back with any bacteria, but the infectious disease doctors are looking at changing his current antibiotics. His bilirubin has remained at 23 the last two days.
The CT scan yesterday was done with Bryce getting the contrast dye through his NG tube and wasn't very precise and consequently didn't show anything significant. The doctors have hesitated using IV contrast because it is likely to destroy his kidney, but they have reached the point that they need to do this to see what is going on to potentially save his life. They should do this CT scan tomorrow.
This evening one of the oncologists met with many of us to discuss the seriousness of Bryce's condition. He was very kind, but also very honest. He reviewed some history, which I will share a part of here. Since January they have been looking for this lymphoma because they suspected that Bryce had it, but it was so elusive. They did almost every test there is and did many cultures and biopsies and they all came back negative for lymphoma (only showed the Epstein Barr virus). They had been consulting with doctors all across the country trying to figure out what Bryce had. We were scheduled to go to the Mayo Clinic in May to see what they could determine. Finally one of the biopsies came back positive for lymphoma, but the pathologists said it was still hard to differentiate. They sent the sample to Massachusetts General Hospital to have it confirmed. It came back as T-cell lymphoma, which was about the time that Bryce went into liver failure.
With this history in mind the oncologists’ concern from the beginning was to know if the treatment was effective since this lymphoma had been so elusive. It is not like many cancers where there is a tumor and they can detect it shrinking following the treatment. The oncologist said the question he has is if the increased liver failure is the result of the lymphoma or is it the result of the chemo. All protocols that oncologists go by is not to give chemo when patients are in liver failure, but they felt they had no choice, if they were going to try to save his life. He said they may be able to tell what is going on by doing a liver biopsy, but wonder if it is worth the trauma to Bryce to do so. Tomorrow the doctors from the various services are going to discuss his situation.
We were grateful to have Jerica and her family with us this evening for this very sobering discussion. Afterwards we had a family prayer and humbly petitioned the Lord that if possible He would still heal Bryce - we have faith that He can do so. However, we humbly and very tearfully put Bryce in the Lord's hands and told Heavenly Father that we will accept His will. We know that it may be a great blessing for Bryce to pass on knowing that it is possible that his quality of life may not be very good after this.
We have so greatly admired Jerica's courage and tenacity through all of this. What a tremendous blessing she has been to both Bryce and to us! She and her family have been there with us through this entire ordeal as well as our family members and friends. What was most tender to us was after the prayer to see Jerica sit on the bed and hold Bryce and weep. Bryce asked that the rest of us leave the room and they were able to spend 30 minutes together. I know that this was a sacred time to this beautiful couple.
In sharing this we want you to know that we have not given up hope that Bryce can still be healed. We know that with the Lord all things are possible. However, we also realize very poignantly the seriousness of the situation. We continue to trust that He will do what is best for Bryce.
In 1990 when Bryce was seven years old he received his third kidney transplant. We believe that this was a great gift to him from Heavenly Father. He had suffered greatly with dialysis as a very young boy and had been on the transplant list for two years waiting for a kidney. At this two-year point I had just been called to serve on the stake high council and when the stake president set me apart he promised me in that blessing that Bryce would receive a kidney. Four days later we received the call that a kidney was available. We know that his was not a coincidence.
The kidney worked fairly well at first, but then Bryce went into serious rejection, just like he had with the two previous kidneys he had received. We then received approval to go to Pittsburgh Children's Hospital for Bryce to receive an experimental anti-rejection drug that potentially could still save the kidney. The night before we were to leave for Pittsburgh Bryce got ill and so the trip was postponed. Then through a wonderful miracle the Lord healed Bryce – he was home from the hospital just a few days later. The kidney has worked well for these last 19 years until this last month.
We know that just as the Lord turned things around completely and healed Bryce back in 1990 that He can do so again, if it is His will. We humbly ask that you continue to pray that Bryce will not have to suffer much longer and that if it is the Lord's will that he will heal him, but if not, that He will take Bryce quickly to Himself.
June 7, 2009
It was a busy day for Bryce between dialysis, lab draws (took three people poking him four times to get blood), and a CT scan. We were touched this evening when he asked that we have a prayer together in his hospital room.
Unfortunately today was not as good as yesterday. He didn't sleep well last night and seemed more wasted. Also his appearance wasn't as good. He only sat in the chair for a little while and did not walk. His bilirubin has climbed back to 23, but his white blood count dropped from 55,000 to 35,000 (still high, but better).
Lately I have pondered several scriptures that have been beneficial for me. One is 1 Nephi 3:7 where Nephi responds that he knows that God loves His children; nevertheless, he did not know the meaning of all things. This is very powerful to me that even though I don't know why Bryce has suffered since he was a baby and now has to fight for his life with this cancer - I do know that Heavenly Father loves him and my family.
I also firmly believe that God has a purpose for each of us even though we often don't understand. I have reflected on Isaiah 55:8-9 - "... as the heavens are higher than the earth, so are my ways higher than your ways..." I believe in the next life we will understand these things more fully, but for now we just need to trust in the Lord with all of our hearts.
Thank you again for your prayers. Our simple thanks expressed in these updates almost seems trite for the many prayers each of you continue to offer in his behalf.
Unfortunately today was not as good as yesterday. He didn't sleep well last night and seemed more wasted. Also his appearance wasn't as good. He only sat in the chair for a little while and did not walk. His bilirubin has climbed back to 23, but his white blood count dropped from 55,000 to 35,000 (still high, but better).
Lately I have pondered several scriptures that have been beneficial for me. One is 1 Nephi 3:7 where Nephi responds that he knows that God loves His children; nevertheless, he did not know the meaning of all things. This is very powerful to me that even though I don't know why Bryce has suffered since he was a baby and now has to fight for his life with this cancer - I do know that Heavenly Father loves him and my family.
I also firmly believe that God has a purpose for each of us even though we often don't understand. I have reflected on Isaiah 55:8-9 - "... as the heavens are higher than the earth, so are my ways higher than your ways..." I believe in the next life we will understand these things more fully, but for now we just need to trust in the Lord with all of our hearts.
Thank you again for your prayers. Our simple thanks expressed in these updates almost seems trite for the many prayers each of you continue to offer in his behalf.
Bryce and Jerica's Engagement Picture
Here is a picture of Bryce and Jerica at the Draper Utah Temple the evening they were engaged, on April 18th. It is amazing how much has changed since that day!
June 6, 2009
We were excited to see improvements in Bryce today! He worked with the physical therapist twice, morning and afternoon, and each time probably walked about 50 yards. He said that he felt much stronger today than he did previously. We are thrilled to get any improvements we can get.
We also thought that he looked better today. I love to see Bryce smile - those white teeth shining through his very jaundiced face really lifts my spirit. Unfortunately his lab values have not changed much for the positive yet - his bilirubin actually went back up to 19 yesterday and remained the same today. His white blood count is also staying about 55,000.
It has been nice to have others staying with Bryce as he becomes very anxious to be alone. His sister, Heidi, had a very touching experience praying with Bryce today. I have found my time that I spend a lone with Bryce to be very to be very special. We greatly appreciate all of those who have helped.
We found out tonight after we left that Bryce has a fever again. We hope that this is not anything major, but in his condition it is a huge concern. Next Friday is supposed to be when he gets his third round of chemo.
We also thought that he looked better today. I love to see Bryce smile - those white teeth shining through his very jaundiced face really lifts my spirit. Unfortunately his lab values have not changed much for the positive yet - his bilirubin actually went back up to 19 yesterday and remained the same today. His white blood count is also staying about 55,000.
It has been nice to have others staying with Bryce as he becomes very anxious to be alone. His sister, Heidi, had a very touching experience praying with Bryce today. I have found my time that I spend a lone with Bryce to be very to be very special. We greatly appreciate all of those who have helped.
We found out tonight after we left that Bryce has a fever again. We hope that this is not anything major, but in his condition it is a huge concern. Next Friday is supposed to be when he gets his third round of chemo.
Buzzed Heads
Here is my buzzed head to show sympathy for Bryce losing his hair from the chemotherapy. A number of others have also buzzed their heads to include Jerica's father, Jeff; his brother-in-law, Brandon; his cousins: Justin Hunter, James Davidson, Dustin Holt, and Carter Holt; and others.
Bryce & Jerica
This is a picture of Bryce and Jerica on my (Ken's) birthday, March 21st. Bryce had a feeding tube still in place from his last hospital admission.
June 5, 2009
Today was a better day for Bryce. YEA!!! He worked with a physical therapist and had a pretty good walk. We are very happy to see him doing therapy again as he has gradually become weaker over the last week. The therapist said he would work with Bryce the next three days he is on.
Unfortunately his lab values were out of whack so he had to have dialysis again - two days in a row. We had hoped that the every other day regimen was going to work for him.
He enjoyed going for a wheelchair ride this evening. We took him to the main foyer of the hospital where he could be off his floor and out of his room. His lengthy hospital stay has to be very old for him.
Ken and Kendra
Unfortunately his lab values were out of whack so he had to have dialysis again - two days in a row. We had hoped that the every other day regimen was going to work for him.
He enjoyed going for a wheelchair ride this evening. We took him to the main foyer of the hospital where he could be off his floor and out of his room. His lengthy hospital stay has to be very old for him.
Ken and Kendra
June 4, 2009
The culture of the PICC line came back positive for bacteria today - it didn't have lots of bacteria, but enough obviously that it can cause problems. They took Bryce down to ultrasound and put a new Pic line in the other arm. They had quite a difficult time so it took quite awhile, but at least it is done now.
The PICC line is a central line that is threaded up through the veins and ends right above the heart - they use this line to give him TPN (Total Parental Nutrition) - he hasn't had really anything to eat or drink now for five weeks except for a little ice and sucking on a toothette dipped in a liquid.
We were told wrong on his labs yesterday - his bilirbubin was actually 19+ yesterday and his white blood count was 52,000. Interestingly today his bilirubin was 16.8 and his white blood count was 55,000 - basically the same values I reported yesterday. Hopefully tomorrow we will continue to see a positive trend.
Bryce continues to be quite weak. We need to ensure that physical therapy works with him each day. They often will come, but Bryce is having dialysis or something else going on and then it doesn't happen. He has done well to sit in a chair a couple of times per day, but he hasn't walked as much lately as he did when he was in ICU.
Although Bryce continues to have a lot of anxiety he is keeping a very positive attitude. Today he told me that he plans to use his "thumbs up" sign more to show others that he is positive! I thought that was cool.
I guess we have become accustomed to Bryce's appearance. My younger brother, Dennis, visited yesterday and had not seen Bryce since he was on a ventilator about 3-4 weeks ago. We went down to lunch together afterwards and I asked him why his forehead was covered with perspiration. He told me that he was not prepared to see how bad Bryce looked and it actually made him sick to his stomach. Today Bryce asked to look at himself - he said he only got a quick glance last week when he took a shower. After he looked at himself in the mirror he said I just look like a guy who has cancer and didn't make a big deal of it.
Please keep the prayers for him coming as well as many others who are struggling with their own challenges at this time.
The PICC line is a central line that is threaded up through the veins and ends right above the heart - they use this line to give him TPN (Total Parental Nutrition) - he hasn't had really anything to eat or drink now for five weeks except for a little ice and sucking on a toothette dipped in a liquid.
We were told wrong on his labs yesterday - his bilirbubin was actually 19+ yesterday and his white blood count was 52,000. Interestingly today his bilirubin was 16.8 and his white blood count was 55,000 - basically the same values I reported yesterday. Hopefully tomorrow we will continue to see a positive trend.
Bryce continues to be quite weak. We need to ensure that physical therapy works with him each day. They often will come, but Bryce is having dialysis or something else going on and then it doesn't happen. He has done well to sit in a chair a couple of times per day, but he hasn't walked as much lately as he did when he was in ICU.
Although Bryce continues to have a lot of anxiety he is keeping a very positive attitude. Today he told me that he plans to use his "thumbs up" sign more to show others that he is positive! I thought that was cool.
I guess we have become accustomed to Bryce's appearance. My younger brother, Dennis, visited yesterday and had not seen Bryce since he was on a ventilator about 3-4 weeks ago. We went down to lunch together afterwards and I asked him why his forehead was covered with perspiration. He told me that he was not prepared to see how bad Bryce looked and it actually made him sick to his stomach. Today Bryce asked to look at himself - he said he only got a quick glance last week when he took a shower. After he looked at himself in the mirror he said I just look like a guy who has cancer and didn't make a big deal of it.
Please keep the prayers for him coming as well as many others who are struggling with their own challenges at this time.
June 3, 2009
Today we were so excited to hear that Bryce's bilirubin had dropped to 16 - now we are anxious to see what it will do in the next couple of days. Hopefully it will continue a downward trend. However, we are concerned that his white blood count has increased to 55,000. Fortunately his fever and chills have stopped the last 24 hours! They are doing a lot of cultures trying to determine where the infection is.
The dialysis last night really helped him to feel much better today. They did an ultrasound yesterday of his kidney and there are no obvious signs that he is in rejection, but only time will tell if it will bounce back and start working again. We are still hopeful for the kidney as well has Bryce surviving this cancer.
Today, Dr. Alonzo, the transplant surgeon, came in to see Bryce and discussed the possibility, if things deteriorated, the need to do abdominal surgery again. They suspect that the large hematoma in the abdomen may be the cause of the infection. We were all touched as Bryce humbly said to her in the face of this possibility - "I trust you". She remarked back to him - what our you trying to do make me cry. This becomes a lot more significant when you realize that everything they do to Bryce now is very traumatic for him. Any blood draws or IV sticks are traumatizing to him. (part of the problem is that his veins now are very hard to find and they usually have to poke him multiple times.) Usually they have been using his PIC line to draw blood, but it will need to be replaced real soon as it is becoming sluggish to draw blood now and is also a potential cause of infection.
Tomorrow will be five weeks since he was admitted and I think the length of the hospitalization has caused him to really need his family close by for support. He wants at least one of us nearby all of the time and when we say good-bye (even if another family member is staying) he pleads with you (again with his expressive eyes for us not to go). He continues to feel a lot of anxiousness.
The last five weeks have been filled with many emotions - times where we hang on to the smallest good news, great joy as we hear very positive news of improvement, touching - almost sacred moments we have spent with our son, times where we have wept uncontrollably as we have witnessed him suffer and have questioned whether he will survive; nevertheless, through all of this we humbly have not felt abandoned by the Lord - we still trust that He will do what is best for Bryce and know that He has a purpose in all things. We continue to pray that we will learn the lessons we need to learn from this experience.
Through these updates we have shared some very personal feelings, but have felt that it is the right thing to do so for those who geniunely care about our family and specifically our son, Bryce, and who offer up their faith and prayers in his behalf. Thank You!
The dialysis last night really helped him to feel much better today. They did an ultrasound yesterday of his kidney and there are no obvious signs that he is in rejection, but only time will tell if it will bounce back and start working again. We are still hopeful for the kidney as well has Bryce surviving this cancer.
Today, Dr. Alonzo, the transplant surgeon, came in to see Bryce and discussed the possibility, if things deteriorated, the need to do abdominal surgery again. They suspect that the large hematoma in the abdomen may be the cause of the infection. We were all touched as Bryce humbly said to her in the face of this possibility - "I trust you". She remarked back to him - what our you trying to do make me cry. This becomes a lot more significant when you realize that everything they do to Bryce now is very traumatic for him. Any blood draws or IV sticks are traumatizing to him. (part of the problem is that his veins now are very hard to find and they usually have to poke him multiple times.) Usually they have been using his PIC line to draw blood, but it will need to be replaced real soon as it is becoming sluggish to draw blood now and is also a potential cause of infection.
Tomorrow will be five weeks since he was admitted and I think the length of the hospitalization has caused him to really need his family close by for support. He wants at least one of us nearby all of the time and when we say good-bye (even if another family member is staying) he pleads with you (again with his expressive eyes for us not to go). He continues to feel a lot of anxiousness.
The last five weeks have been filled with many emotions - times where we hang on to the smallest good news, great joy as we hear very positive news of improvement, touching - almost sacred moments we have spent with our son, times where we have wept uncontrollably as we have witnessed him suffer and have questioned whether he will survive; nevertheless, through all of this we humbly have not felt abandoned by the Lord - we still trust that He will do what is best for Bryce and know that He has a purpose in all things. We continue to pray that we will learn the lessons we need to learn from this experience.
Through these updates we have shared some very personal feelings, but have felt that it is the right thing to do so for those who geniunely care about our family and specifically our son, Bryce, and who offer up their faith and prayers in his behalf. Thank You!
June 2, 2009
Bryce had a very restless night; therefore, Kendra didn't get much sleep either last night. She is staying with him again this evening and when I called she said that he is doing better. What a devoted mother she is! (Some of you may not know that she donated her kidney to Bryce when he was only two years old. A few days after the surgery she got toxic shock and almost died - unfortunately her kidney never did work for Bryce.) We also greatly appreciated the many hours that Jerica and her parents spend sitting with Bryce.
The doctors are very concerned about Bryce because it appears that he may have sepsis again (serious infection in his body). His white blood count quickly rose to 37,000. He had a fever last night, but today we were relieved that his vital signs have been pretty good.
He was quite miserable today, but after they did dialysis this evening he seemed to be doing much better. They were unable to do dialysis yesterday evening because his blood pressure was too low and since they gave him a break on Sunday he was in real need to have it done.
I spent today with Bryce and did my work on my laptop while I was with him in his room. Bryce frequently needed some help and it was my sacred privilege to be able to assist him throughout the day - getting him warm blankets, holding his hand, adjusting his pillows, pulling him up in bed, etc. He was too weak to do much other than lie in his bed today. This evening he did sit in a chair for awhile.
Today I was greatly touched as he said, "Dad, I am afraid." When asked to clarify I found out he was referring to what was going to happen next to him medically. Every poke or procedure seems to be traumatic to him right now. As he was taken down for another CT scan he asked me to pray for him.
Even though Bryce has been moved to the unit outside the ICU we would appreciate it if you would check with us first before coming to visit. He is still not feeling well and continues to be very susceptible to further illness. Thanks for understanding.
Please know of our deep gratitude for the many kindnesses that are shown to us. We so much appreciate the kind emails and other correspondence, brining us delicious meals, providing other service, etc. Today my team from work spent a couple of hours working in our yard - they did a great job! Some anonymous person did a wonderful job mowing and edging our lawn. What a difference it makes to us to know that people truly care, that they love our family, and are praying for our son, Bryce. Most importantly we are so grateful for your faith and prayers for him to get better.
Although Bryce is now a grown man, sitting with him and assisting him has brought back many tender moments to me of when he was so very ill as a young child. Sometimes it is so easy to shed some tears.
Love,
Ken and Kendra
The doctors are very concerned about Bryce because it appears that he may have sepsis again (serious infection in his body). His white blood count quickly rose to 37,000. He had a fever last night, but today we were relieved that his vital signs have been pretty good.
He was quite miserable today, but after they did dialysis this evening he seemed to be doing much better. They were unable to do dialysis yesterday evening because his blood pressure was too low and since they gave him a break on Sunday he was in real need to have it done.
I spent today with Bryce and did my work on my laptop while I was with him in his room. Bryce frequently needed some help and it was my sacred privilege to be able to assist him throughout the day - getting him warm blankets, holding his hand, adjusting his pillows, pulling him up in bed, etc. He was too weak to do much other than lie in his bed today. This evening he did sit in a chair for awhile.
Today I was greatly touched as he said, "Dad, I am afraid." When asked to clarify I found out he was referring to what was going to happen next to him medically. Every poke or procedure seems to be traumatic to him right now. As he was taken down for another CT scan he asked me to pray for him.
Even though Bryce has been moved to the unit outside the ICU we would appreciate it if you would check with us first before coming to visit. He is still not feeling well and continues to be very susceptible to further illness. Thanks for understanding.
Please know of our deep gratitude for the many kindnesses that are shown to us. We so much appreciate the kind emails and other correspondence, brining us delicious meals, providing other service, etc. Today my team from work spent a couple of hours working in our yard - they did a great job! Some anonymous person did a wonderful job mowing and edging our lawn. What a difference it makes to us to know that people truly care, that they love our family, and are praying for our son, Bryce. Most importantly we are so grateful for your faith and prayers for him to get better.
Although Bryce is now a grown man, sitting with him and assisting him has brought back many tender moments to me of when he was so very ill as a young child. Sometimes it is so easy to shed some tears.
Love,
Ken and Kendra
Pray For Bryce
These are some wrist bands that we purchased to share with family and others. Unfortunately what we purchased didn't go far as we would love to share them with many others, but it was cost prohibitive. Anyway we thought it was cool to see that the color green not only represents lymphoma, but also kidney transplants.
June 1, 2009
We were excited, but also nervous, when we learned this morning that they planned to transfer Bryce from the ICU to a regular nursing floor. He has been in one of three different ICUs for the past 4 1/2 weeks. This afternoon he was transferred to the 10th floor at Intermountain Medical Center.
It has been difficult for us to see him so much pain. The doctors are trying to find the balance with giving him enough pain medication to help him get through the pain, but not so much that his bowels will continue to not fully get going. Today Bryce was very anxious. A number of times he would as me if I would hold his hand as he felt a need for some assurance. What a sacred privilege to do so!
We were very concerned this evening as his heart rate continued to climb (over 150) and his blood pressure was dropping (70/38) and he got a low-grade fever (101 degrees). We hope that the doctors were not premature moving him out of ICU to the busy unit.
We think what has happened is that Bryce got dehydrated as he has not had dialysis for the last two days (he has been getting dialysis daily). Since dialysis takes so much out of Bryce he asked if he could have Sunday as a day of rest from dialysis. This morning they were going to do dialysis, but since he was going to be transferred out of the ICU it was postponed and they didn't get to him until this evening. Through dialysis they have been giving him extra fluids.
Kendra is going to stay the night with Bryce to be there for him as he is not feeling well and continues to feel such anxiousness with all that is going on with him. (By the way she is feeling much better than she did last week.) roomstaying with Bryce this evening.)
Today I took some time to read to Bryce some of these updates that I have sent out for the past month. He doesn't remember much beyond a couple of days ago. He was very attentive as he learned what had happened to his last 4 1/2 weeks.
We cannot express enough our deep gratitude at the service, love, and prayers we are receiving from you.
It has been difficult for us to see him so much pain. The doctors are trying to find the balance with giving him enough pain medication to help him get through the pain, but not so much that his bowels will continue to not fully get going. Today Bryce was very anxious. A number of times he would as me if I would hold his hand as he felt a need for some assurance. What a sacred privilege to do so!
We were very concerned this evening as his heart rate continued to climb (over 150) and his blood pressure was dropping (70/38) and he got a low-grade fever (101 degrees). We hope that the doctors were not premature moving him out of ICU to the busy unit.
We think what has happened is that Bryce got dehydrated as he has not had dialysis for the last two days (he has been getting dialysis daily). Since dialysis takes so much out of Bryce he asked if he could have Sunday as a day of rest from dialysis. This morning they were going to do dialysis, but since he was going to be transferred out of the ICU it was postponed and they didn't get to him until this evening. Through dialysis they have been giving him extra fluids.
Kendra is going to stay the night with Bryce to be there for him as he is not feeling well and continues to feel such anxiousness with all that is going on with him. (By the way she is feeling much better than she did last week.) roomstaying with Bryce this evening.)
Today I took some time to read to Bryce some of these updates that I have sent out for the past month. He doesn't remember much beyond a couple of days ago. He was very attentive as he learned what had happened to his last 4 1/2 weeks.
We cannot express enough our deep gratitude at the service, love, and prayers we are receiving from you.
May 31, 2009
Today was another tough day for Bryce in terms of pain and weakness. However, he was a real trooper despite the pain and weakness. He sat in a chair a couple of times for a total of five hours and walked in his room unassisted. Ultimately this did wear him out and he was glad to lay back in bed.
Because of his white blood count he can't walk in the hall right now - the doctors don't want him outside of his room.
This evening Kendra and I were able to spend some time alone with Bryce and had a very good visit with him. We had a very spiritual discussion that was very touching to us. The last 4+ weeks has really purified him - there is a special innocence and sweetness to our son that he has gained through this hospitalization.
I have mentioned in other updates of how polite and kind and gracious Bryce has been to others - even those who cause him to have more pain. On a number of occasions I will tell him, "Bryce, I am so sorry that you have to go through all of this." He will reply, "It is okay, Dad."
Over the years Bryce and I have had our differences and at times, unfortunately, our relationship has been strained. We have always loved each other and have also had some special times.Every time I see Bryce I hold his hand and he gives me a squeeze and I tell him how much I love him. It is so special to me as he then tells me, "I love you too, Dad."
We had a very special relationship when he was a little boy and had so many medical challenges. Over the years my wife and I have spent many hours, since Bryce was only 11 months, sitting by his bedside and praying for the Lord to bless our dear son and often seeing miracles take place in his life.
Tonight I asked Bryce if he feels hope that he will survive this cancer. He told us that he does, that he really feels that he will make it. We discussed that his positive attitude and his faith are most important. We reiterated that his life is really in the Lord's hands!
Anyway it was a very special evening tonight to share feelings with our beloved son. We are so grateful for the wonderful privilege that is ours to be his parents.
Because of his white blood count he can't walk in the hall right now - the doctors don't want him outside of his room.
This evening Kendra and I were able to spend some time alone with Bryce and had a very good visit with him. We had a very spiritual discussion that was very touching to us. The last 4+ weeks has really purified him - there is a special innocence and sweetness to our son that he has gained through this hospitalization.
I have mentioned in other updates of how polite and kind and gracious Bryce has been to others - even those who cause him to have more pain. On a number of occasions I will tell him, "Bryce, I am so sorry that you have to go through all of this." He will reply, "It is okay, Dad."
Over the years Bryce and I have had our differences and at times, unfortunately, our relationship has been strained. We have always loved each other and have also had some special times.Every time I see Bryce I hold his hand and he gives me a squeeze and I tell him how much I love him. It is so special to me as he then tells me, "I love you too, Dad."
We had a very special relationship when he was a little boy and had so many medical challenges. Over the years my wife and I have spent many hours, since Bryce was only 11 months, sitting by his bedside and praying for the Lord to bless our dear son and often seeing miracles take place in his life.
Tonight I asked Bryce if he feels hope that he will survive this cancer. He told us that he does, that he really feels that he will make it. We discussed that his positive attitude and his faith are most important. We reiterated that his life is really in the Lord's hands!
Anyway it was a very special evening tonight to share feelings with our beloved son. We are so grateful for the wonderful privilege that is ours to be his parents.
May 30, 2009
Wow this month has gone by so fast and yet so slow.
This morning Bryce was in a somber mood. He did not get out of bed. He just seemed worn out most of the day.He said he was too tired for visitors and only wanted Jerica, and a few other family members to visit. He dozed off and on all day but had a furrowed brow often when I looked at him. Dialysis was draining to him.
Bryce asked that his Dad and Grandpa give him a blessing for peace and comfort, which they did. We are grateful that he trusts in the Lord and asks for a priesthood blessing.
He had to be stuck three times for an IV - yet he was kind and patient with the nurses. It is amazing how polite and kind he is to those who continue to hurt him. He asked me (Kendra) to watch over him and wanted me to hold his hand. He did not want me to sing or hum which always comes so natural to me so I had to stop myself a few times.
No big change in his labs today. He did have a liver ultrasound today, but we didn't hear what the results were yet.
Thank you for continual prayers, notes, calls and e-mails, they bouy us up and keep us afloat in this sea of the unknown.
Have a wonderful Sabbath, may you be blessed with the sweet spirit of peace and comfort also.
Love,
Ken and Kendra
This morning Bryce was in a somber mood. He did not get out of bed. He just seemed worn out most of the day.He said he was too tired for visitors and only wanted Jerica, and a few other family members to visit. He dozed off and on all day but had a furrowed brow often when I looked at him. Dialysis was draining to him.
Bryce asked that his Dad and Grandpa give him a blessing for peace and comfort, which they did. We are grateful that he trusts in the Lord and asks for a priesthood blessing.
He had to be stuck three times for an IV - yet he was kind and patient with the nurses. It is amazing how polite and kind he is to those who continue to hurt him. He asked me (Kendra) to watch over him and wanted me to hold his hand. He did not want me to sing or hum which always comes so natural to me so I had to stop myself a few times.
No big change in his labs today. He did have a liver ultrasound today, but we didn't hear what the results were yet.
Thank you for continual prayers, notes, calls and e-mails, they bouy us up and keep us afloat in this sea of the unknown.
Have a wonderful Sabbath, may you be blessed with the sweet spirit of peace and comfort also.
Love,
Ken and Kendra
May 29, 2009
Today was another stressful day after yesterday being so positive (the ups and downs in this roller coaster ride do become very difficult).
Bryce seemed to be in a lot more pain today. However, what was most stressful was some discussions with the doctors about Bryce. The ICU doctors felt strongly that Bryce needed to make some decisions (advance directives) regarding his desires in the event that his condition deteriorated and so we had a follow-up discussion today. Bryce handled this very well and made some very mature decisions.
However, shortly after this discussion we met with the oncologist and he was very frank about the seriousness of Bryce's cancer. He did not give us much hope. The oncology team that is working with Bryce had hoped that they would have seen a better response to the chemo than they have seen. Bryce told the doctor twice that he can tell that he feels that he is getting better. He has made great improvements.
We know that with God all things are possible to them that believe. Even though this is very hard to hear we certainly have not given up. Our attitude is that we demonstrate our faith and continue praying, that we do everything we can medically, and then turn it over to the Lord - it is in His hands. We continue to trust in Him that His will be done knowing that He will do what is best for our son.
The good news is that in the last couple of days Bryce has voided twice - both times only a small amount; nevertheless, he still did this even though he is on dialysis daily. His kidney doctor has not given up on the kidney nor on his survival even though the oncologists are less than optimistic.
It is so nice to see he and Jerica together holding hands as he lays in his bed. They enjoyed watching a movie again today. We feel so blessed to have Jerica and her family in our family's lives. Jerica's father, Jeff, had his head buzzed also. Bryce's cousin, Justin, and his brother-in-law, Brandon, have joined us with buzzed heads! However, today Bryce told me that he thinks my hair is not short enough and that I need to get it shaved????
Bryce seemed to be in a lot more pain today. However, what was most stressful was some discussions with the doctors about Bryce. The ICU doctors felt strongly that Bryce needed to make some decisions (advance directives) regarding his desires in the event that his condition deteriorated and so we had a follow-up discussion today. Bryce handled this very well and made some very mature decisions.
However, shortly after this discussion we met with the oncologist and he was very frank about the seriousness of Bryce's cancer. He did not give us much hope. The oncology team that is working with Bryce had hoped that they would have seen a better response to the chemo than they have seen. Bryce told the doctor twice that he can tell that he feels that he is getting better. He has made great improvements.
We know that with God all things are possible to them that believe. Even though this is very hard to hear we certainly have not given up. Our attitude is that we demonstrate our faith and continue praying, that we do everything we can medically, and then turn it over to the Lord - it is in His hands. We continue to trust in Him that His will be done knowing that He will do what is best for our son.
The good news is that in the last couple of days Bryce has voided twice - both times only a small amount; nevertheless, he still did this even though he is on dialysis daily. His kidney doctor has not given up on the kidney nor on his survival even though the oncologists are less than optimistic.
It is so nice to see he and Jerica together holding hands as he lays in his bed. They enjoyed watching a movie again today. We feel so blessed to have Jerica and her family in our family's lives. Jerica's father, Jeff, had his head buzzed also. Bryce's cousin, Justin, and his brother-in-law, Brandon, have joined us with buzzed heads! However, today Bryce told me that he thinks my hair is not short enough and that I need to get it shaved????
May 28, 2009
We want to thank you again for the many kindnesses, faith, and prayers offered to Bryce and to us. We have been greatly touched by the many email messages and cards as you have expressed your love and support.
It was four weeks ago today that Bryce was first admitted to the ICU with liver failure and sepsis. It seems like forever ago in many ways and yet we wonder what happened to the month of May. Today Bryce looked better and acted better than he has since he was first admitted. He was very alert and is speaking much better than he has since he was extubated. What a great blessing we have received from the Lord to preserve his life! He continues to be in a lot of pain, but he is being very brave. He still has a long ways to go, but he has come so very far.
What was really encouraging to me is that I had him talk to Jerica on the phone and he asked her to bring some movies they could watch together. This is the first time that Bryce has shown interest in watching a movie - something that he really enjoys doing.
It was very touching to me this evening as we visited with him as he sincerely expressed gratitude to each of us for our love and support. He was very coherent and showed his genuine sense of humor. It is nice to see his white teeth as he smiled in the midst of his very jaundiced face. (His bilirubin has now climbed to 25.4.)
Today Bryce took his first shower in four weeks. We told him it was about time he cleaned himself up. He walked to and from the shower room with a walker. Since there was a mirror in the bathroom I warned Bryce about his appearance so that he wasn't shocked when he looked in the mirror. I told him that at least he looks much better than he has previously. Afterwards he thanked me for forewarning him.
We got an email from one of our friends, Linda Watson, who along with her family greatly helped us when Bryce received his second and third kidney transplant. (It is hard to think about his first transplant being when he was only 2 1/2 years old - the same age as our little granddaughter, Hailey.)
Anyway she shared her feelings about Bryce's great courage as a little boy. He continues to demonstrate this great courage now! Today the doctor approached him about a living will and advanced directives - this kind-of took Bryce off guard. He told us that he knows that we all believe that he will make it and said to us that with us all believing that he will make it that he also believes that he will make it. He definitely wants to fight for his life so he can marry his sweetheart. We also talked about trusting in the Lord and accepting His will and he nodded his head.
Another blessing that we feel tremendous gratitude for is our medical insurance. Our insurance coverage for Bryce was supposed to terminate the end of this month as Bryce turned 26 on May 9th. In March I felt impressed to research what options we had to ensure that Bryce was covered with medical insurance after his 26th birthday. The options looked either very costly or a huge paperwork nightmare and waiting period. Fortunately I found that my company, Intermountain Healthcare, allows for an extension of medical insurance for disabled dependents. Bryce has not been able to work since November due to illness and we qualified. I can't imagine worrying about the financial cost of his medical care on top of worrying about him.
It was four weeks ago today that Bryce was first admitted to the ICU with liver failure and sepsis. It seems like forever ago in many ways and yet we wonder what happened to the month of May. Today Bryce looked better and acted better than he has since he was first admitted. He was very alert and is speaking much better than he has since he was extubated. What a great blessing we have received from the Lord to preserve his life! He continues to be in a lot of pain, but he is being very brave. He still has a long ways to go, but he has come so very far.
What was really encouraging to me is that I had him talk to Jerica on the phone and he asked her to bring some movies they could watch together. This is the first time that Bryce has shown interest in watching a movie - something that he really enjoys doing.
It was very touching to me this evening as we visited with him as he sincerely expressed gratitude to each of us for our love and support. He was very coherent and showed his genuine sense of humor. It is nice to see his white teeth as he smiled in the midst of his very jaundiced face. (His bilirubin has now climbed to 25.4.)
Today Bryce took his first shower in four weeks. We told him it was about time he cleaned himself up. He walked to and from the shower room with a walker. Since there was a mirror in the bathroom I warned Bryce about his appearance so that he wasn't shocked when he looked in the mirror. I told him that at least he looks much better than he has previously. Afterwards he thanked me for forewarning him.
We got an email from one of our friends, Linda Watson, who along with her family greatly helped us when Bryce received his second and third kidney transplant. (It is hard to think about his first transplant being when he was only 2 1/2 years old - the same age as our little granddaughter, Hailey.)
Anyway she shared her feelings about Bryce's great courage as a little boy. He continues to demonstrate this great courage now! Today the doctor approached him about a living will and advanced directives - this kind-of took Bryce off guard. He told us that he knows that we all believe that he will make it and said to us that with us all believing that he will make it that he also believes that he will make it. He definitely wants to fight for his life so he can marry his sweetheart. We also talked about trusting in the Lord and accepting His will and he nodded his head.
Another blessing that we feel tremendous gratitude for is our medical insurance. Our insurance coverage for Bryce was supposed to terminate the end of this month as Bryce turned 26 on May 9th. In March I felt impressed to research what options we had to ensure that Bryce was covered with medical insurance after his 26th birthday. The options looked either very costly or a huge paperwork nightmare and waiting period. Fortunately I found that my company, Intermountain Healthcare, allows for an extension of medical insurance for disabled dependents. Bryce has not been able to work since November due to illness and we qualified. I can't imagine worrying about the financial cost of his medical care on top of worrying about him.
May 27, 2009
We feel that today was a very good day for most of the day for Bryce and are encouraged by this. When I got to the hospital this morning Bryce was sitting in a chair and seemed to be in a good mood. He was clear in his thinking and continually expressed gratitude to his nurse who was caring for him.
Jerica spent the bulk of the day with him and said that he seemed to be his old self and didn't have any episodes of confusion. He also seemed to be in better pain control. He walked today further than he has walked before since he has been in the hospital the last four weeks.
His bilirubin remained essentially the same today.
Bryce was miserable this evening as the doctors gave him a few medications to try to get his bowels going. This caused him to be very nauseated and the anti-nausea meds did little to relieve it.
Hopefully tonight Bryce will be able to get some sleep. The nurses have told us that he sleeps very little at night and only sleeps off and on during the day.
We haven't talked to the oncologist for the last two days and are uncertain what is happening in terms of the chemo and the cancer.
Unfortunately Kendra is sick tonight, which is concerning because she doesn't have time to be sick and it will limit her being with Bryce. Please include her in your prayers. (Thanks)
We continue to feel great hope in Bryce being healed. However, in the scriptures I have discovered an important word, "nevertheless", that I feel is important to include in our prayers: "nevertheless, thy will be done."
Jerica spent the bulk of the day with him and said that he seemed to be his old self and didn't have any episodes of confusion. He also seemed to be in better pain control. He walked today further than he has walked before since he has been in the hospital the last four weeks.
His bilirubin remained essentially the same today.
Bryce was miserable this evening as the doctors gave him a few medications to try to get his bowels going. This caused him to be very nauseated and the anti-nausea meds did little to relieve it.
Hopefully tonight Bryce will be able to get some sleep. The nurses have told us that he sleeps very little at night and only sleeps off and on during the day.
We haven't talked to the oncologist for the last two days and are uncertain what is happening in terms of the chemo and the cancer.
Unfortunately Kendra is sick tonight, which is concerning because she doesn't have time to be sick and it will limit her being with Bryce. Please include her in your prayers. (Thanks)
We continue to feel great hope in Bryce being healed. However, in the scriptures I have discovered an important word, "nevertheless", that I feel is important to include in our prayers: "nevertheless, thy will be done."
May 26, 2009
This morning was similar to yesterday with Bryce really appearing to be in a lot of pain and continuing to be confused part of the time. This condition on top of his appearance of being so jaundiced and gaunt has been very difficult for us.
The medication that they gave him for his white blood count really worked well as his counts quadrupled. We were worried that maybe he had an infection going on, but his temperature has remained normal and his other vital signs are quite stable. (Count our many blessings!)
His bilirubin has increased to 23.3. One doctor's theory on this is that with the liver not functioning at full capacity and since his bowels and kidney are not working that the body is just unable to flush it out.
The nephrologist felt that part of Bryce's confusion could be due to a high calcium level. They have decided to do dialysis everyday now for three hours. Jerica said that this evening, following dialysis, when Bryce was sitting in a chair, that he was almost himself so it appears that the dialysis really helped. She really enjoyed the time she was able to spend alone with him tonight. We are so grateful for the unconditional love that she has for Bryce and all of the time she spends to be with him at the hospital. We know that she is an angel sent from the Lord for our son.
Even though we are concerned about his confusion we are cracked up by some of the things Bryce tells us. One of the staff, whom Bryce has known for sometime, came by to check on him and asked how he was doing. Bryce told him that he was just waiting to get a liver transplant. Kendra had to let him know that he wasn't getting a liver transplant and that his liver is working better. Kendra also asked him today if he wanted a back massage and he said no, that little boy over there wants one first. (Of course there was no little boy.)
Thank you again for your continual prayers. It means so much to us!
The medication that they gave him for his white blood count really worked well as his counts quadrupled. We were worried that maybe he had an infection going on, but his temperature has remained normal and his other vital signs are quite stable. (Count our many blessings!)
His bilirubin has increased to 23.3. One doctor's theory on this is that with the liver not functioning at full capacity and since his bowels and kidney are not working that the body is just unable to flush it out.
The nephrologist felt that part of Bryce's confusion could be due to a high calcium level. They have decided to do dialysis everyday now for three hours. Jerica said that this evening, following dialysis, when Bryce was sitting in a chair, that he was almost himself so it appears that the dialysis really helped. She really enjoyed the time she was able to spend alone with him tonight. We are so grateful for the unconditional love that she has for Bryce and all of the time she spends to be with him at the hospital. We know that she is an angel sent from the Lord for our son.
Even though we are concerned about his confusion we are cracked up by some of the things Bryce tells us. One of the staff, whom Bryce has known for sometime, came by to check on him and asked how he was doing. Bryce told him that he was just waiting to get a liver transplant. Kendra had to let him know that he wasn't getting a liver transplant and that his liver is working better. Kendra also asked him today if he wanted a back massage and he said no, that little boy over there wants one first. (Of course there was no little boy.)
Thank you again for your continual prayers. It means so much to us!
May 25, 2009
Bryce struggled a little today with being in a new environment (Respiratory ICU) and asked if he could move back to his old room where he knows the people (Shock Trauma ICU). One of our concerns is his confusion. At first it was kind of funny to hear him say some "off the wall” things, but it became more concerning as it has become more pronounced throughout the day. This has caused him to be easily upset with us as we try to alleviate his concerns (that are not applicable). His confusion is probably a result of the combination of his medications, “hospitalitis” and his high bilirubin. His pain is still high and he was put on a pain pump today, we just hope he remembers to push the button.
It was also very hard for us to see him cry today as he was frustrated with his confusion and the anxiety it is producing in him. He also moans and groans a lot in his sleep because of the pain he is in - this obviously is also difficult for us.
One of the things he is continually focused on was getting something to eat or drink. Sometimes he appeared to be seeing a mirage - he sees something and thinks it is food or drink. I think his four weeks of not eating anything is affecting him. Unfortunately his bowels still are not functioning well enough to eat or drink - he is still putting out a significant amount through his NG tube.
We were pleased to see his Bilirubin down to 18.9 from 22. This is positive even though it has much further to go. He is off oxygen and his vital signs are within normal limits.
He had to have dialysis again last night because his potassium went up to high. His white blood count has not dropped yet from the second round of chemo they gave him; however, they have also been giving him medications to help build his white blood count.
We are also pleased in some increase in his strength. He walked in the hall with his walker again which was great to see.
We are remaining positive and are so pleased with his progress even though we want him to get better "now", but it will be all in the Lord’s due time. Sometimes it is so hard to be patient. This must be one of the many lessons we are to learn from this trial? Hum…why are we such slow learners…
It was also very hard for us to see him cry today as he was frustrated with his confusion and the anxiety it is producing in him. He also moans and groans a lot in his sleep because of the pain he is in - this obviously is also difficult for us.
One of the things he is continually focused on was getting something to eat or drink. Sometimes he appeared to be seeing a mirage - he sees something and thinks it is food or drink. I think his four weeks of not eating anything is affecting him. Unfortunately his bowels still are not functioning well enough to eat or drink - he is still putting out a significant amount through his NG tube.
We were pleased to see his Bilirubin down to 18.9 from 22. This is positive even though it has much further to go. He is off oxygen and his vital signs are within normal limits.
He had to have dialysis again last night because his potassium went up to high. His white blood count has not dropped yet from the second round of chemo they gave him; however, they have also been giving him medications to help build his white blood count.
We are also pleased in some increase in his strength. He walked in the hall with his walker again which was great to see.
We are remaining positive and are so pleased with his progress even though we want him to get better "now", but it will be all in the Lord’s due time. Sometimes it is so hard to be patient. This must be one of the many lessons we are to learn from this trial? Hum…why are we such slow learners…
May 24, 2009
It is hard to believe that it was three weeks ago tonight that Bryce had exploratory abdominal surgery. It seems like forever ago!
Bryce actually looked better to me today than yesterday even though his bilirubin has now climbed to 22, which is concerning. He continues to be on oxygen, but otherwise he is maintaining his vital signs on his own. He was not nearly as restless and he seemed to have a little more strength. He is talking a little better, but it is still somewhat hard to understand what he says.
I thought it was cute what he said tonight to his nurse when he was talking about taking a wheelchair ride: "I don't know if I have the strength to do this, but I would really like to try." He did it and ended up being about to sit in the wheelchair for about an hour. (He had dialysis today and it really wipes him out physically - this is the second time he has done the conventional four-hour dialysis and he tolerated it well again.)
He still has not really had anything to eat or drink for over three weeks. A few days ago he was able to manipulate the doctor to let him suck on toothette swabs that were dipped in Dr. Pepper. Tonight he was trying to fanagle getting a few more swallows. It was pretty funny to listen to him. He spoke of some restrictions the doctors had placed on him several months ago about no snowboarding or no paintball games and said to the nurse - he didn't say anything about no Dr. Pepper. (I personally have never tried Dr. Pepper, but Bryce sure loves it.)
Tonight they moved him from Shock Trauma ICU to Respiratory ICU - the only reason is that they are expecting more trauma patients this holiday weekend and needed his room.
The oncologist spoke to Kendra today and is very worried about how Bryce will do with this second round of chemo - the effects could cause him to go into complete liver failure and kill him. The effects of chemo should start hitting his body anytime now. Our bishop and I gave him another priesthood blessing and I felt good about him surviving the chemotherapy and eventually being healed. We truly believe in miracles and are so grateful for the many prayers offered in his behalf that can make these miracles possible. As always our faith is that the Lord's will be done and that we will accept this
Bryce actually looked better to me today than yesterday even though his bilirubin has now climbed to 22, which is concerning. He continues to be on oxygen, but otherwise he is maintaining his vital signs on his own. He was not nearly as restless and he seemed to have a little more strength. He is talking a little better, but it is still somewhat hard to understand what he says.
I thought it was cute what he said tonight to his nurse when he was talking about taking a wheelchair ride: "I don't know if I have the strength to do this, but I would really like to try." He did it and ended up being about to sit in the wheelchair for about an hour. (He had dialysis today and it really wipes him out physically - this is the second time he has done the conventional four-hour dialysis and he tolerated it well again.)
He still has not really had anything to eat or drink for over three weeks. A few days ago he was able to manipulate the doctor to let him suck on toothette swabs that were dipped in Dr. Pepper. Tonight he was trying to fanagle getting a few more swallows. It was pretty funny to listen to him. He spoke of some restrictions the doctors had placed on him several months ago about no snowboarding or no paintball games and said to the nurse - he didn't say anything about no Dr. Pepper. (I personally have never tried Dr. Pepper, but Bryce sure loves it.)
Tonight they moved him from Shock Trauma ICU to Respiratory ICU - the only reason is that they are expecting more trauma patients this holiday weekend and needed his room.
The oncologist spoke to Kendra today and is very worried about how Bryce will do with this second round of chemo - the effects could cause him to go into complete liver failure and kill him. The effects of chemo should start hitting his body anytime now. Our bishop and I gave him another priesthood blessing and I felt good about him surviving the chemotherapy and eventually being healed. We truly believe in miracles and are so grateful for the many prayers offered in his behalf that can make these miracles possible. As always our faith is that the Lord's will be done and that we will accept this
May 23, 2009
This evening we attended a session in the Draper Temple with the stake presidency and our wives. It was a great place to feel the peace of the Lord. Today I have been reflecting a lot on my favorite scripture in Proverbs 3:5 - "Trust in the Lord with all of thy heart and lean not to thine own understanding." I really do trust in the Lord but I focused on the word "all." It is quite the concept to consider.
We were encouraged today when Bryce was able to walk about 30 feet with a walker. This was significantly better than yesterday. He also sat in a chair two different times. He told Jerica that he wanted to get back to bed by himself. She insisted that he allow the nurse to help him. We were also encouraged that Bryce was able to handle conventional dialysis (3-4 hours at a higher rate) versus continuous dialysis (12 - 24 hours).
Unfortunately Bryce was in a lot of pain and appeared to be really suffering. He had a hard time getting comfortable.
Today Bryce received the second round of chemotherapy - this time they used all four drugs where last time they only used three. They still did not give him a full-dose because his liver function is still not where it should be.
The oncologist told us that it is a miracle that Bryce has survived the last three weeks and an even greater miracle that his condition has improved - off blood pressure medications, off the ventilator, labs have improved, etc.
This morning Kendra went into Bryce's room and saw his bamboo plant and was greatly touched when in her mind she saw an analogy to Bryce's current condition. One stem of his plant was very yellow and shriveled - analogous to Bryce who is very jaundiced and is only skin and bones, but there was one small green shoot in the middle of this yellow stem that shows that it still has life. Another stem is green and continually growing, which is likened to Bryce's spirit. The other cool thing is that several months ago Kendra purchased a little guy holding a thumbs up symbol. This is one thing that has been impressive with Bryce - is that he will often give us or the medical staff a thumbs up signal to let them know he is hanging in there! (We put pictures below)
We greatly appreciate your continual love and support.
We were encouraged today when Bryce was able to walk about 30 feet with a walker. This was significantly better than yesterday. He also sat in a chair two different times. He told Jerica that he wanted to get back to bed by himself. She insisted that he allow the nurse to help him. We were also encouraged that Bryce was able to handle conventional dialysis (3-4 hours at a higher rate) versus continuous dialysis (12 - 24 hours).
Unfortunately Bryce was in a lot of pain and appeared to be really suffering. He had a hard time getting comfortable.
Today Bryce received the second round of chemotherapy - this time they used all four drugs where last time they only used three. They still did not give him a full-dose because his liver function is still not where it should be.
The oncologist told us that it is a miracle that Bryce has survived the last three weeks and an even greater miracle that his condition has improved - off blood pressure medications, off the ventilator, labs have improved, etc.
This morning Kendra went into Bryce's room and saw his bamboo plant and was greatly touched when in her mind she saw an analogy to Bryce's current condition. One stem of his plant was very yellow and shriveled - analogous to Bryce who is very jaundiced and is only skin and bones, but there was one small green shoot in the middle of this yellow stem that shows that it still has life. Another stem is green and continually growing, which is likened to Bryce's spirit. The other cool thing is that several months ago Kendra purchased a little guy holding a thumbs up symbol. This is one thing that has been impressive with Bryce - is that he will often give us or the medical staff a thumbs up signal to let them know he is hanging in there! (We put pictures below)
We greatly appreciate your continual love and support.
