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.
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.
Picture of Bryce's Plant
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!
May 22, 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.
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.
We greatly appreciate your continual love and support.
May 21, 2009
Wow - this really is a rollercoaster ride!!! Today wasn't terrible, but it was hard. Bryce was able to talk a little better, but it is still very difficult for him to speak and hard to always understand what he is saying. However, it is much better than when he was on the ventilator. Bryce and I shared some tender moments visiting while I was with him this morning. He asked if I would watch over him while he rested. Yesterday, feeling concerned because of him aspirating last time after he was extubated, he asked Kendra to watch over him.
Bryce was very weak today. He was able to do so much more the two previous days. Today I helped the nurse to get Bryce out of the bed to stand and then to sit in a chair. This was hard for him and then when we got him out of the chair he couldn't do it - we had to almost lift him. It was difficult for me to see his little legs quiver just to stand up and then have him collapse back into the chair.
He did quite well with his oxygenation. For the most part he didn't require any oxygen and was just on a humidifier. However, it still took some effort for each respiration. His heart rate got up to the 140s for a short time, but then dropped down into the 120s.
He is losing lots of hair so Jerica cut his hair when he sat in the chair. Again this was very difficult because it brought back memories when we cut Kendra's mother hair and a few days later she passed away. In saying this it doesn't mean that we have lost faith in him surviving, but I have had sobering memories of the past. In my desire to support Bryce I had my son-in-law buzz my hair tonight. It feels like I am ready for basic training all over again.
Unfortunately his bilirubin climbed to 19 today - he is becoming more and more jaundiced. It has been very concerning to us to see his bilirubin continue to rise as the plan was to wait until it was 5 or 6 to do chemo again. The doctors believe that it is a combination of things causing this - most likely caused by the breakdown of the hematoma in his abdomen. We talked at length about options with the oncologist. He said that he and six of his collegues met today to discuss Bryce's situation and they felt that the best plan is to give Bryce another partial round of chemo. They plan to do this tomorrow. We were in full agreement as the lymphoma will kill Bryce if he isn't treated. It will be hard to see him weakened further by the chemo, but we don't see any other option medically.
They found a blood clot in his leg and put a filter in the major vein of the heart today to prevent any potential clots that break lose from causing a fatal problem for his heart or lungs. Bryce continues to suffer from a lot of abdominal pain. His bowels are working a little now, but not fully. Another good sign is that he is having less out of his NG tube from his stomach.
Bryce was pleading with the resident to allow him to eat something - he hasn't eaten or drank anything for over three weeks. He asked can I just have a bite of jello or pudding or ice cream. How about some Dr. Pepper - or some Dr. Pepper ice chips? When Dr. Alonso, who is in charge, came in, he asked if he could at least dip the toothette swabs into Dr. Pepper and suck on them. She agreed to a very limited amount and also to let him have a couple of lollipops each day.
It is always touching to me and Kendra to witness the tender love of Jerica for Bryce. It is hard when she is having a hard time holding back the tears as she is concerned about him.
After spending the day with Bryce I have contemplated how much we take for granted. Many of us are without pain or significant pain; we don't have to fight for our breaths, we can eat and drink, we can easily walk, we can talk freely, we don't have to be hooked up to multiple lines and machines, etc, etc. I am so proud of my son for his determination and courage. Just as he did as a little boy he often will express thanks to the medical staff who continually poke and prod him.
We pray that he too will soon be able to do these same things again that we take for granted.
Bryce was very weak today. He was able to do so much more the two previous days. Today I helped the nurse to get Bryce out of the bed to stand and then to sit in a chair. This was hard for him and then when we got him out of the chair he couldn't do it - we had to almost lift him. It was difficult for me to see his little legs quiver just to stand up and then have him collapse back into the chair.
He did quite well with his oxygenation. For the most part he didn't require any oxygen and was just on a humidifier. However, it still took some effort for each respiration. His heart rate got up to the 140s for a short time, but then dropped down into the 120s.
He is losing lots of hair so Jerica cut his hair when he sat in the chair. Again this was very difficult because it brought back memories when we cut Kendra's mother hair and a few days later she passed away. In saying this it doesn't mean that we have lost faith in him surviving, but I have had sobering memories of the past. In my desire to support Bryce I had my son-in-law buzz my hair tonight. It feels like I am ready for basic training all over again.
Unfortunately his bilirubin climbed to 19 today - he is becoming more and more jaundiced. It has been very concerning to us to see his bilirubin continue to rise as the plan was to wait until it was 5 or 6 to do chemo again. The doctors believe that it is a combination of things causing this - most likely caused by the breakdown of the hematoma in his abdomen. We talked at length about options with the oncologist. He said that he and six of his collegues met today to discuss Bryce's situation and they felt that the best plan is to give Bryce another partial round of chemo. They plan to do this tomorrow. We were in full agreement as the lymphoma will kill Bryce if he isn't treated. It will be hard to see him weakened further by the chemo, but we don't see any other option medically.
They found a blood clot in his leg and put a filter in the major vein of the heart today to prevent any potential clots that break lose from causing a fatal problem for his heart or lungs. Bryce continues to suffer from a lot of abdominal pain. His bowels are working a little now, but not fully. Another good sign is that he is having less out of his NG tube from his stomach.
Bryce was pleading with the resident to allow him to eat something - he hasn't eaten or drank anything for over three weeks. He asked can I just have a bite of jello or pudding or ice cream. How about some Dr. Pepper - or some Dr. Pepper ice chips? When Dr. Alonso, who is in charge, came in, he asked if he could at least dip the toothette swabs into Dr. Pepper and suck on them. She agreed to a very limited amount and also to let him have a couple of lollipops each day.
It is always touching to me and Kendra to witness the tender love of Jerica for Bryce. It is hard when she is having a hard time holding back the tears as she is concerned about him.
After spending the day with Bryce I have contemplated how much we take for granted. Many of us are without pain or significant pain; we don't have to fight for our breaths, we can eat and drink, we can easily walk, we can talk freely, we don't have to be hooked up to multiple lines and machines, etc, etc. I am so proud of my son for his determination and courage. Just as he did as a little boy he often will express thanks to the medical staff who continually poke and prod him.
We pray that he too will soon be able to do these same things again that we take for granted.
May 20, 2009
Today was another pretty awesome day. Bryce was taken off the ventilator this morning! He has a face mask on now and can even talk a little, very softly. We call him awesome man.
He still is having a lot of abdominal pain and his gastrointestinal system is still not working very well. The nasal gastrointestinal tube continues to pull a lot of fluids (bile, etc.) out of his body.
He was able to sit in a chair twice today and walked a little in his room. He gets worn out easily with having to exert so much effort to breathe on his own now, but all in all he is doing wonderful considering where he has been.
We continue to pray that his bilirubin will drop as they won't do the second round of chemo until it is at least down to 5 to 6 - today it increased to 17.6. This seems particularly important to us as the oncologist told us that this is a race to see if the chemotherapy or the cancer will win.
Bryce continues to be on dialysis for 12 hours each night. So far his kidney is not working, but we are hopeful that he will be able to retain it.
We are so grateful for all of your faith, prayers, and support.You will never know how much this means to us - we can feel all the love you are sending our way.
THANK YOU!
We know that some of you and your family members who are praying for Bryce have not ever met him and most of you have not met his fiancé, Jerica Robinson, his little angel and ours too!
He still is having a lot of abdominal pain and his gastrointestinal system is still not working very well. The nasal gastrointestinal tube continues to pull a lot of fluids (bile, etc.) out of his body.
He was able to sit in a chair twice today and walked a little in his room. He gets worn out easily with having to exert so much effort to breathe on his own now, but all in all he is doing wonderful considering where he has been.
We continue to pray that his bilirubin will drop as they won't do the second round of chemo until it is at least down to 5 to 6 - today it increased to 17.6. This seems particularly important to us as the oncologist told us that this is a race to see if the chemotherapy or the cancer will win.
Bryce continues to be on dialysis for 12 hours each night. So far his kidney is not working, but we are hopeful that he will be able to retain it.
We are so grateful for all of your faith, prayers, and support.You will never know how much this means to us - we can feel all the love you are sending our way.
THANK YOU!
We know that some of you and your family members who are praying for Bryce have not ever met him and most of you have not met his fiancé, Jerica Robinson, his little angel and ours too!
May 14, 2009
Today was a very good day for Bryce! It was exciting to see some good progress in him today. This morning his white blood count reached 1.3 (0.4 yesterday). Later this afternoon it increased to 2.0. This means that the bone marrow is starting to do its job again. It will also allow the oncologists to do another round of chemotherapy to kill the cancer cells - they may do this as early as tomorrow or Saturday.
Bryce still has the endotracheal tube in his throat and on the ventilator, but he was much less agitated and much more alert and interactive today than he has been since he was put on the ventilator. It was so special to be able to communicate more with him.
Jerica came in today when the physical therapist was working on Bryce so his hands were not restrained as they normally are. When he came in he reached both arms up to her so she could embrace him. I wasn't there, but Kendra said it was a very tender moment. It was their first embrace for almost two weeks since he went into emergency surgery. (I got an embrace today also, which was very special to me. Bryce also signed that he loved me - which is something I will cherish.)
Today his weight was 157 lbs - only nine lbs more than his admission weight. Since Bryce was alert I told him that he had got up to 235 lbs. His expressive eyes got really big with a look of "really?" Kendra told him that he once again has bird legs like his father. (I admit it, but it did help me more easily run marathons...)
Tomorrow could be a very big day for Bryce. They are going to replace the central line in his femoral artery and put it in his neck/chest area (probably a subclavian vein). This is a very important step because it will allow Bryce to sit up and perhaps even get out of bed. If he does well with all of this it is possible that they can remove the endotracheal tube tomorrow!!! Let us hope and pray. They are getting worried that if they leave it in much longer that he will get pneumonia.
We know that your prayers are working. Thank you so much for this wonderful support.
Bryce still has the endotracheal tube in his throat and on the ventilator, but he was much less agitated and much more alert and interactive today than he has been since he was put on the ventilator. It was so special to be able to communicate more with him.
Jerica came in today when the physical therapist was working on Bryce so his hands were not restrained as they normally are. When he came in he reached both arms up to her so she could embrace him. I wasn't there, but Kendra said it was a very tender moment. It was their first embrace for almost two weeks since he went into emergency surgery. (I got an embrace today also, which was very special to me. Bryce also signed that he loved me - which is something I will cherish.)
Today his weight was 157 lbs - only nine lbs more than his admission weight. Since Bryce was alert I told him that he had got up to 235 lbs. His expressive eyes got really big with a look of "really?" Kendra told him that he once again has bird legs like his father. (I admit it, but it did help me more easily run marathons...)
Tomorrow could be a very big day for Bryce. They are going to replace the central line in his femoral artery and put it in his neck/chest area (probably a subclavian vein). This is a very important step because it will allow Bryce to sit up and perhaps even get out of bed. If he does well with all of this it is possible that they can remove the endotracheal tube tomorrow!!! Let us hope and pray. They are getting worried that if they leave it in much longer that he will get pneumonia.
We know that your prayers are working. Thank you so much for this wonderful support.
May 13, 2009
Kendra and I are so grateful for being blessed with such wonderful friends and family members who have been so supportive during this difficult time. For the most part Bryce continues to make slow progress, but it is hard to be patient with the slow results. We have to keep reminding ourselves that he is not getting worse.
Bryce and Jerica's wedding is scheduled for three months from today so Kendra told him today that he needs to get better faster.
Today they tried to do the conventional four-hour dialysis on him and his body (specifically his blood pressure) could not handle it. The plan is now to do continuous dialysis every night for 12 hours.
Unfortunately he was not ready to get his endotracheal tube removed today and get off the ventilator. He continues to do most of his own breathing, but still needs some support of the ventilator.
His white blood count is creeping up - today it was 0.4 - one tenth increase from last night. According to the oncologist one of the key indicators that the chemotherapy is effective is the LDH liver enzyme. On May 5th his level was over 18,000 and today it is down to 5000. (Normal range is around 300-600.) This was encouraging to us.
The doctors need to get a more permanent central line in one of Bryce's large veins in his chest/neck area to do dialysis. WIth the line in his femoral vein in his leg he is unable to sit up or move around; however, Bryce's platelets are too low to be real effective in clotting so it is too much of a surgical risk to do at this time.
We continue to feel deeply grateful for your prayers for Bryce. Again we recognize that there are many others who also need our prayers, but thanks for adding Bryce to your list. In fact this evening it was very sobering to me when I called a member of our stake to offer condolences because her sister just passed away. As we visited I found out that her sister died of the same type of cancer that has Bryce has - related to a transplanted organ many years ago. This doesn't lessen our hope, but it does reinforce the reality of the seriousness of Bryce's situation.
Bryce and Jerica's wedding is scheduled for three months from today so Kendra told him today that he needs to get better faster.
Today they tried to do the conventional four-hour dialysis on him and his body (specifically his blood pressure) could not handle it. The plan is now to do continuous dialysis every night for 12 hours.
Unfortunately he was not ready to get his endotracheal tube removed today and get off the ventilator. He continues to do most of his own breathing, but still needs some support of the ventilator.
His white blood count is creeping up - today it was 0.4 - one tenth increase from last night. According to the oncologist one of the key indicators that the chemotherapy is effective is the LDH liver enzyme. On May 5th his level was over 18,000 and today it is down to 5000. (Normal range is around 300-600.) This was encouraging to us.
The doctors need to get a more permanent central line in one of Bryce's large veins in his chest/neck area to do dialysis. WIth the line in his femoral vein in his leg he is unable to sit up or move around; however, Bryce's platelets are too low to be real effective in clotting so it is too much of a surgical risk to do at this time.
We continue to feel deeply grateful for your prayers for Bryce. Again we recognize that there are many others who also need our prayers, but thanks for adding Bryce to your list. In fact this evening it was very sobering to me when I called a member of our stake to offer condolences because her sister just passed away. As we visited I found out that her sister died of the same type of cancer that has Bryce has - related to a transplanted organ many years ago. This doesn't lessen our hope, but it does reinforce the reality of the seriousness of Bryce's situation.
May 12, 2009
I would ask that you specifically pray that Bryce can get his endotracheal tube out tomorrow and that he will do well without it. This tube is really causing him to have a lot of agitation and he is so uncomfortable with it, plus it is extremely inhibits his communication ability.
The doctors are debating whether or not to take the tube out. Some feel that leaving it in will put him at a greater risk of developing pneumonia, but others feel that he is still too sick to not have it in and they want a good airway in case he goes into respiratory arrest. They question if he will be able to fully breathe on his own with his distended abdomen and post-abdominal surgery. (He is doing most of the breathing on his own, but occasionally have been supported by the ventilator.)
The good news today is that the continuous dialysis ended. He was on it for a full week. Dialysis was very helpful in removing excess fluids waste products from his body. Currently his kidney is not working so they also took out the foley catheter. The doctors' plan is to do dialysis as needed several times per week.
The other good news is that he is down to 178 lbs - only 30 lbs heavier (due to excess fluids) than when he admitted. It is sure a lot better than the 235 lbs he got up to. However, now he almost looks gaunt in his upper chest and neck area - this along with how jaundiced he is really makes him look very ill. This morning as I held my son's hand and looked into his eyes and seeing how sick he is I felt like weeping.
We had a frank visit with the oncologist today about the cancer. He told us that Bryce's life is really up to whether the chemotherapy or the cancer wins the race. This evening Bryce's white blood count increased to 0.3. Yesterday it was 0.1. They cannot give him more chemotherapy until it reaches at least 2.0.
The oncologist said that he feels the chemotherapy is working to some extent because of the progress Bryce has made clinically and with his labs, but he had hoped that his liver function lab values would have improved more than they have. What is confusing to the medical staff is why Bryce's bilirubin keeps climbing - all of his other liver function labs have gradually improved, but his bilirubin has increase from 5.6 on May 1st to 9.6 today.
Thanks again for your faith and prayers. I hope tomorrow evening I can report that the endotracheal tube is out and he is off the ventilator.
The doctors are debating whether or not to take the tube out. Some feel that leaving it in will put him at a greater risk of developing pneumonia, but others feel that he is still too sick to not have it in and they want a good airway in case he goes into respiratory arrest. They question if he will be able to fully breathe on his own with his distended abdomen and post-abdominal surgery. (He is doing most of the breathing on his own, but occasionally have been supported by the ventilator.)
The good news today is that the continuous dialysis ended. He was on it for a full week. Dialysis was very helpful in removing excess fluids waste products from his body. Currently his kidney is not working so they also took out the foley catheter. The doctors' plan is to do dialysis as needed several times per week.
The other good news is that he is down to 178 lbs - only 30 lbs heavier (due to excess fluids) than when he admitted. It is sure a lot better than the 235 lbs he got up to. However, now he almost looks gaunt in his upper chest and neck area - this along with how jaundiced he is really makes him look very ill. This morning as I held my son's hand and looked into his eyes and seeing how sick he is I felt like weeping.
We had a frank visit with the oncologist today about the cancer. He told us that Bryce's life is really up to whether the chemotherapy or the cancer wins the race. This evening Bryce's white blood count increased to 0.3. Yesterday it was 0.1. They cannot give him more chemotherapy until it reaches at least 2.0.
The oncologist said that he feels the chemotherapy is working to some extent because of the progress Bryce has made clinically and with his labs, but he had hoped that his liver function lab values would have improved more than they have. What is confusing to the medical staff is why Bryce's bilirubin keeps climbing - all of his other liver function labs have gradually improved, but his bilirubin has increase from 5.6 on May 1st to 9.6 today.
Thanks again for your faith and prayers. I hope tomorrow evening I can report that the endotracheal tube is out and he is off the ventilator.
May 8, 2009
We feel that all of the prayers for Bryce are working – he seems to be making steady improvement each day. We know that he has a very long ways to go, but progress is exciting to us! Today he looks about the same as yesterday, but the good news is that some of his lab values for his liver have improved today. These labs are not affected by the dialysis and demonstrate that his liver function is improving – the doctors said this could be due to the chemotherapy, but said it is still too early to tell . His white blood count has decreased even lower so we are all being very careful around him so he won’t become more ill.
Bryce’s sedation was reduced somewhat today so he was a little more awake today – this caused him to be quite agitated due to pain and also because of the endotracheal tube being in his throat. It is still hard to look into his eyes and see the pain he is experiencing. It is amazing to me how expressive Bryce’s eyes have always been.
The medical staff are basically keeping him on the same plan – ventilator, continuous dialysis, medications, and monitoring him. They also are no longer trying to pull off fluids because they want to maintain his blood pressure – he still requires some medication to keep his blood pressure up.
We are hopeful that in the next few days there will be more evidence that the chemotherapy is working to destroy the cancer cells.
Thanks for everyone's prayers and support.
Ken and Kendra
Bryce’s sedation was reduced somewhat today so he was a little more awake today – this caused him to be quite agitated due to pain and also because of the endotracheal tube being in his throat. It is still hard to look into his eyes and see the pain he is experiencing. It is amazing to me how expressive Bryce’s eyes have always been.
The medical staff are basically keeping him on the same plan – ventilator, continuous dialysis, medications, and monitoring him. They also are no longer trying to pull off fluids because they want to maintain his blood pressure – he still requires some medication to keep his blood pressure up.
We are hopeful that in the next few days there will be more evidence that the chemotherapy is working to destroy the cancer cells.
Thanks for everyone's prayers and support.
Ken and Kendra
May 7, 2009
To My Dear Friends in the Stake:
Here is the latest on our son, Bryce. Many of you have asked if it is okay to share this information with others. We feel fine about you sharing this information with others in the stake who may be interested. We are grateful for the concern and love we feel from members of our stake and are thankful for all of the prayers for our son.
We feel such a depth of gratitude to the Lord for His tender mercies in our son's life. Although he has a very long ways to go we continue to see daily improvements with our son. We will take any positive signs we can get in his healing process.
Yesterday he got up to 235 lbs - 87 lbs of excess fluids. He is on dialysis around the clock and through this they were able to pull off about 33 lbs of excess fluid and so today he was down to 202 lbs, which is still an extra 54 lbs of water weight. Today the stopped taking additional fluids off him beyond the fluids they are giving him - this is important to maintain his blood pressure. It has been so very difficult to see him look so poor that we can't tell you how wonderful it is for us to see his appearance improve!
For the most part the doctors are very pleased with how well he has responded – I think much better than they expected. His doctor today told us that the dialysis is working extremely well for Bryce. He said this doesn’t always happen – for example, he said that sometimes they have patients waiting for a liver transplant and the dialysis hasn’t worked very well for them compared to how it has worked for Bryce. They are hopeful that possibly his liver is starting to respond a little, but they are unsure at this point.
Bryce has always liked to wear socks - he doesn't like to go around in bare feet. So yesterday I bought him some "King size" white ankle socks to cover his feet. He seemed to respond positively to this.
We are encouraged also by the fact that his lactic acid level has continued to decrease - it went from a high of 30 a few days ago to only 2 this morning.
He is still on a ventilator – mainly to keep his airway open just in case, but he is doing most of the breathing on his own. He has been getting more agitated as they have reduced some of his sedation, but he is still quite sedated to keep him comfortable – particularly with the endotracheal tube in his throat as it makes him feel like he is gagging.
His white blood count has dropped to very low levels – probably due to the chemotherapy - and they expect it to continue to drop. They have cautioned us about the serious risk Bryce is in of easily developing an additional infection or illness because he really has zero immune system at this time. We have been asked to greatly reduce the number of family members who can visit him to reduce this risk.
He continues to need lots of blood products – packed red blood cells and platelets. This could be due to the dialysis,poor liver function and the chemotherapy.
We continue to have hope that the chemotherapy will destroy the cancer, but do not have any clear indications whether it is working yet - hopefully in the next few days we will know.
They have warned us that if they can eradicate this cancer that it often will come back - sometimes within a few months, which obviously is very concerning to us. His transplanted kidney appears not to be working at all right now, but it is possible that it can bounce back after his liver function improves.
We understand the realities of his condition and recognize that this will be a very long and difficult recovery if he survives, but we have great hope in the Lord knowing that if it is His will that He can do ALL things!
We also know that your faith and prayers are making a positive difference for Bryce. Thank you for all that you are doing for Bryce and our family!
Love,
Ken and Kendra
Here is the latest on our son, Bryce. Many of you have asked if it is okay to share this information with others. We feel fine about you sharing this information with others in the stake who may be interested. We are grateful for the concern and love we feel from members of our stake and are thankful for all of the prayers for our son.
We feel such a depth of gratitude to the Lord for His tender mercies in our son's life. Although he has a very long ways to go we continue to see daily improvements with our son. We will take any positive signs we can get in his healing process.
Yesterday he got up to 235 lbs - 87 lbs of excess fluids. He is on dialysis around the clock and through this they were able to pull off about 33 lbs of excess fluid and so today he was down to 202 lbs, which is still an extra 54 lbs of water weight. Today the stopped taking additional fluids off him beyond the fluids they are giving him - this is important to maintain his blood pressure. It has been so very difficult to see him look so poor that we can't tell you how wonderful it is for us to see his appearance improve!
For the most part the doctors are very pleased with how well he has responded – I think much better than they expected. His doctor today told us that the dialysis is working extremely well for Bryce. He said this doesn’t always happen – for example, he said that sometimes they have patients waiting for a liver transplant and the dialysis hasn’t worked very well for them compared to how it has worked for Bryce. They are hopeful that possibly his liver is starting to respond a little, but they are unsure at this point.
Bryce has always liked to wear socks - he doesn't like to go around in bare feet. So yesterday I bought him some "King size" white ankle socks to cover his feet. He seemed to respond positively to this.
We are encouraged also by the fact that his lactic acid level has continued to decrease - it went from a high of 30 a few days ago to only 2 this morning.
He is still on a ventilator – mainly to keep his airway open just in case, but he is doing most of the breathing on his own. He has been getting more agitated as they have reduced some of his sedation, but he is still quite sedated to keep him comfortable – particularly with the endotracheal tube in his throat as it makes him feel like he is gagging.
His white blood count has dropped to very low levels – probably due to the chemotherapy - and they expect it to continue to drop. They have cautioned us about the serious risk Bryce is in of easily developing an additional infection or illness because he really has zero immune system at this time. We have been asked to greatly reduce the number of family members who can visit him to reduce this risk.
He continues to need lots of blood products – packed red blood cells and platelets. This could be due to the dialysis,poor liver function and the chemotherapy.
We continue to have hope that the chemotherapy will destroy the cancer, but do not have any clear indications whether it is working yet - hopefully in the next few days we will know.
They have warned us that if they can eradicate this cancer that it often will come back - sometimes within a few months, which obviously is very concerning to us. His transplanted kidney appears not to be working at all right now, but it is possible that it can bounce back after his liver function improves.
We understand the realities of his condition and recognize that this will be a very long and difficult recovery if he survives, but we have great hope in the Lord knowing that if it is His will that He can do ALL things!
We also know that your faith and prayers are making a positive difference for Bryce. Thank you for all that you are doing for Bryce and our family!
Love,
Ken and Kendra
May 6, 2009
I wanted to give you an update on Bryce's condition today.
We received a lot of positive news today that we were very grateful for. Bryce looked so much better today. Surprisingly he still weighs 230 lbs, but the dialysis has made a great difference by somehow shifting the water weight and reducing much of the swelling of his face and neck. He looks more like himself now. Also a lot of the purple discolorization on his face has disappeared as his tissues are being better oxygenated. It is very comforting to us to see this great change in his appearance!
Today he was not very responsive to us, but they said they had to use more sedation during the night because he was so restless and this affected him during the day also. However, it is also nice that he is less aware of what is going on - we are not sure how much he knows. My Dad told him that he loved him and Bryce nodded slightly. He also gave a small squeeze to his fiance's hand today.
The other very positive sign is that his respiratory system is doing significantly better. Whereas yesterday he was draining about 200-300 cc of fluid out of his lungs each hour - today it was only 30-40 cc. His oxygen saturation level was often 99-100%. They have also reduced the ventilator pressure (work of the ventilator versus Bryce breathing on his own) from 15 yesterday down to 5 today.
The dialysis appears to really be helping as some of his other lab values have also improved. All of this was very encouraging to us.
What is very concerning and what we would ask for you to specifically pray for, if you will, is that the chemotherapy will be effective in fighting his cancer.
The lymphoma has now been identified in his blood and in his lungs and therefore is probably throughout his body. Since it is a very aggressive cancer the chemicals should effectively destroy the cancer cells whereever they are in his body. (Chemotherapy agents destroy cells that are quickly dividing and multiplying.)
Unfortunately at this point the doctors don't see evidence that the chemotherapy has done its job because the liver function appears to be the same and has not improved like they expected by now. They haven't given up hope on this yet, but they said if the liver function does not improve by this weekend then they are unsure what to do.
We know that all things are possible for the Lord and trust in Him. We understand the realities of the seriousness of the situation, but we still feel that Bryce will make it. However, if it is the Lord's will to take our son - we will accept His will. At least in the meantime we are comforted knowing that there has been some great improvement in some areas. We are so appreciative of the nurses and doctors for their great care and concern for our son. We are so appreciative for Jerica, Bryce's fiance, who is always by his side during the day and continually encouraging him. Finally we are so appreciative of family, friends and stake members who have shown so much love, support, and continual prayers for Bryce.
We received a lot of positive news today that we were very grateful for. Bryce looked so much better today. Surprisingly he still weighs 230 lbs, but the dialysis has made a great difference by somehow shifting the water weight and reducing much of the swelling of his face and neck. He looks more like himself now. Also a lot of the purple discolorization on his face has disappeared as his tissues are being better oxygenated. It is very comforting to us to see this great change in his appearance!
Today he was not very responsive to us, but they said they had to use more sedation during the night because he was so restless and this affected him during the day also. However, it is also nice that he is less aware of what is going on - we are not sure how much he knows. My Dad told him that he loved him and Bryce nodded slightly. He also gave a small squeeze to his fiance's hand today.
The other very positive sign is that his respiratory system is doing significantly better. Whereas yesterday he was draining about 200-300 cc of fluid out of his lungs each hour - today it was only 30-40 cc. His oxygen saturation level was often 99-100%. They have also reduced the ventilator pressure (work of the ventilator versus Bryce breathing on his own) from 15 yesterday down to 5 today.
The dialysis appears to really be helping as some of his other lab values have also improved. All of this was very encouraging to us.
What is very concerning and what we would ask for you to specifically pray for, if you will, is that the chemotherapy will be effective in fighting his cancer.
The lymphoma has now been identified in his blood and in his lungs and therefore is probably throughout his body. Since it is a very aggressive cancer the chemicals should effectively destroy the cancer cells whereever they are in his body. (Chemotherapy agents destroy cells that are quickly dividing and multiplying.)
Unfortunately at this point the doctors don't see evidence that the chemotherapy has done its job because the liver function appears to be the same and has not improved like they expected by now. They haven't given up hope on this yet, but they said if the liver function does not improve by this weekend then they are unsure what to do.
We know that all things are possible for the Lord and trust in Him. We understand the realities of the seriousness of the situation, but we still feel that Bryce will make it. However, if it is the Lord's will to take our son - we will accept His will. At least in the meantime we are comforted knowing that there has been some great improvement in some areas. We are so appreciative of the nurses and doctors for their great care and concern for our son. We are so appreciative for Jerica, Bryce's fiance, who is always by his side during the day and continually encouraging him. Finally we are so appreciative of family, friends and stake members who have shown so much love, support, and continual prayers for Bryce.
May 5, 2009
Dear Special Stake Friends:
As you could probably tell from my email last night that yesterday was a very tough day for us. It seemed like every bit of news that we received was almost without hope. You don't know how much we appreciate the wonderful love and support that we feel from you. There is a scripture I recently read that I feel is so applicable to the support you have been giving us. Captain Moroni in speaking to Zerahemnah spoke of "the sacred support which we owe to our wives and children..." (Alma 44:5) We consider the support and love we are receiving from you as "sacred."
This morning when we went to see Bryce it was very difficult because he had gained an additional 50 lbs of water weight during the night. Last Thursday when he was admitted he weighed only 148 lbs and this morning he weighed 230 lbs - over 80 lbs of water weight. He was having a hard time oxygenating his blood and so his face was quite purple and because of the jaundice the few times he opens his eyes they are quite yellow. However, he survived the night and basically held his own with his lab values, etc. They aren't getting much better, but for the most part they are not getting worse.
We have been greatly encouraged that his liver function has maintained and not become worse. Bryce was more sedated today, but would occasionally respond by blinking his eyes are nodding his head.
This morning they put a dialysis line in his femoral artery in his leg and he has been on dialysis all day. This has greatly helped him. With the dialysis they are taking off a net of about 300 cc per hour of fluid from his body - they still told us that it will probably take 2-3 weeks to get all of the excess water weight off of his body.
Tonight when we left the hospital Bryce's face and neck are not nearly as swollen as they were earlier and his face only had a little bit of purple discoloration.
Although his condition continues to be very critical and he could die anytime the doctors seemed to be more optimistic and hopeful with us today. Tonight at 9 pm we visited with his nurse and he told us that everyday there are about 20 or more doctors and other specialists consulting on Bryce's case. The nurses and staff have been wonderful. They feel that the next 24-48 hours is a critical time period to really let us know if the chemotherapy he received last night will make a difference in destroying the cancer or if it will further damage his liver and possibly kill him.
His kidney is barely functioning right now and all of the doctors predict that his transplanted kidney will eventually fail (he has had this kidney for 19 years). If it does fail he will probably be on dialysis for a long time because they don't think he will be a good candidate for another kidney transplant because of the cancer. We haven't given up hope on the kidney either, but his life is of course our top concern, not his kidney.
We continue to trust in the Lord and we know that "He doeth not anything save it be for the benefit of the [Bryce], for he loveth [Bryce]..." (1 Nephi 26:24)
Thanks again for everything. We hope that these emails are helpful to know what is going on.
As you could probably tell from my email last night that yesterday was a very tough day for us. It seemed like every bit of news that we received was almost without hope. You don't know how much we appreciate the wonderful love and support that we feel from you. There is a scripture I recently read that I feel is so applicable to the support you have been giving us. Captain Moroni in speaking to Zerahemnah spoke of "the sacred support which we owe to our wives and children..." (Alma 44:5) We consider the support and love we are receiving from you as "sacred."
This morning when we went to see Bryce it was very difficult because he had gained an additional 50 lbs of water weight during the night. Last Thursday when he was admitted he weighed only 148 lbs and this morning he weighed 230 lbs - over 80 lbs of water weight. He was having a hard time oxygenating his blood and so his face was quite purple and because of the jaundice the few times he opens his eyes they are quite yellow. However, he survived the night and basically held his own with his lab values, etc. They aren't getting much better, but for the most part they are not getting worse.
We have been greatly encouraged that his liver function has maintained and not become worse. Bryce was more sedated today, but would occasionally respond by blinking his eyes are nodding his head.
This morning they put a dialysis line in his femoral artery in his leg and he has been on dialysis all day. This has greatly helped him. With the dialysis they are taking off a net of about 300 cc per hour of fluid from his body - they still told us that it will probably take 2-3 weeks to get all of the excess water weight off of his body.
Tonight when we left the hospital Bryce's face and neck are not nearly as swollen as they were earlier and his face only had a little bit of purple discoloration.
Although his condition continues to be very critical and he could die anytime the doctors seemed to be more optimistic and hopeful with us today. Tonight at 9 pm we visited with his nurse and he told us that everyday there are about 20 or more doctors and other specialists consulting on Bryce's case. The nurses and staff have been wonderful. They feel that the next 24-48 hours is a critical time period to really let us know if the chemotherapy he received last night will make a difference in destroying the cancer or if it will further damage his liver and possibly kill him.
His kidney is barely functioning right now and all of the doctors predict that his transplanted kidney will eventually fail (he has had this kidney for 19 years). If it does fail he will probably be on dialysis for a long time because they don't think he will be a good candidate for another kidney transplant because of the cancer. We haven't given up hope on the kidney either, but his life is of course our top concern, not his kidney.
We continue to trust in the Lord and we know that "He doeth not anything save it be for the benefit of the [Bryce], for he loveth [Bryce]..." (1 Nephi 26:24)
Thanks again for everything. We hope that these emails are helpful to know what is going on.
May 4, 2009
Thank you again for your love and kindness, for your faith and prayers. I have felt a need to keep you informed of our son's condition - although it is very difficult for me to do so.
Today has been a most difficult day with many tears shed. Bryce's condition continues to seriously deteriorate. The doctors are convinced that the cancer is very aggressively destroying his liver, which is shutting down his body. They are doing everything they can to keep his vital functions working.
They give him only a slim chance of surviving the next few days. It is so very difficult to see him suffer. His body is so swollen out of proportion - he has about 35 extra pounds of fluid in his tissues. For part of the day he wasn't fully sedated and we were able to communicate some with him. This was good and bad. You could see the great suffering he was going through in his eyes. (His eyes that show how bad he is hurting have too often haunted me - this being the case since he was a baby and started having medical problems.)
However, on the positive side - though he cannot talk because he is on a ventilator when we would tell him that we love him he would mouth that he loved us too. He also gave us two thumbs up, which was very touching to us.
They inserted a chest tube in each of his lungs. His right lung drained off nearly 1 1/2 quarts of fluid today. Tonight before we left they were trying to get another main line in him so he can be put on dialysis, but were not successful by the time we left.
Although he is way too ill to be on chemotherapy, the oncologist told us they have no choice but to start this tonight to save his life. The chemo could take his life or may save his life - it is truly being between a rock and a hard place.
Kendra and I have very humbly placed our son's life in the Lord's hands. We truly want to live by the motto of trusting in the Lord with all of our hearts and not leaning unto our own understanding. We have faith that he can be healed, if it be the Lord's will.
Thank you again for all that you do.
Today has been a most difficult day with many tears shed. Bryce's condition continues to seriously deteriorate. The doctors are convinced that the cancer is very aggressively destroying his liver, which is shutting down his body. They are doing everything they can to keep his vital functions working.
They give him only a slim chance of surviving the next few days. It is so very difficult to see him suffer. His body is so swollen out of proportion - he has about 35 extra pounds of fluid in his tissues. For part of the day he wasn't fully sedated and we were able to communicate some with him. This was good and bad. You could see the great suffering he was going through in his eyes. (His eyes that show how bad he is hurting have too often haunted me - this being the case since he was a baby and started having medical problems.)
However, on the positive side - though he cannot talk because he is on a ventilator when we would tell him that we love him he would mouth that he loved us too. He also gave us two thumbs up, which was very touching to us.
They inserted a chest tube in each of his lungs. His right lung drained off nearly 1 1/2 quarts of fluid today. Tonight before we left they were trying to get another main line in him so he can be put on dialysis, but were not successful by the time we left.
Although he is way too ill to be on chemotherapy, the oncologist told us they have no choice but to start this tonight to save his life. The chemo could take his life or may save his life - it is truly being between a rock and a hard place.
Kendra and I have very humbly placed our son's life in the Lord's hands. We truly want to live by the motto of trusting in the Lord with all of our hearts and not leaning unto our own understanding. We have faith that he can be healed, if it be the Lord's will.
Thank you again for all that you do.
May 3, 2009
Thank you for your faith, love, support, fasting and prayers.
We got home late tonight after a very long day at the hospital. I wanted to give you an update on Bryce's status. Bryce has been diagnosed with a very aggressive lymphoma cancer that is attacking is esophagus, liver, kidney, bowel, lungs, etc. He has been in septic shock and his organs were shutting down.
Unfortunately he continued to get worse and got into respiratory distress today. The doctors felt that he may have a serious infection or even a necrotic or dead bowel that was causing the sepsis (entire body infection) so this evening they decided to do emergency surgery to save his life. They were very concerned about doing the surgery because of his extremely weakened condition and the fact that he has so much scar tissue from all of his previous abdominal surgeries.
Fortunately the surgery went well - they did not find any dead bowel tissue or other infection like they suspected. It at least rules out these possibilities because they really thought this might be the what caused the septic shock.
He is now on a ventilator, which we feel good about because it will allow him to rest. He was really struggling to breathe earlier today so he is now in a drug-induced coma. Although he is critically ill they feel that they need to start the chemotherapy right away to save his life because of how aggressive the cancer is. Although things don't look very good for him I am actually more encouraged this evening that the Lord will preserve his life. We have all that we can do and have put his life in the Lord's hands.
Thanks again for your concern. It is greatly appreciated.
We got home late tonight after a very long day at the hospital. I wanted to give you an update on Bryce's status. Bryce has been diagnosed with a very aggressive lymphoma cancer that is attacking is esophagus, liver, kidney, bowel, lungs, etc. He has been in septic shock and his organs were shutting down.
Unfortunately he continued to get worse and got into respiratory distress today. The doctors felt that he may have a serious infection or even a necrotic or dead bowel that was causing the sepsis (entire body infection) so this evening they decided to do emergency surgery to save his life. They were very concerned about doing the surgery because of his extremely weakened condition and the fact that he has so much scar tissue from all of his previous abdominal surgeries.
Fortunately the surgery went well - they did not find any dead bowel tissue or other infection like they suspected. It at least rules out these possibilities because they really thought this might be the what caused the septic shock.
He is now on a ventilator, which we feel good about because it will allow him to rest. He was really struggling to breathe earlier today so he is now in a drug-induced coma. Although he is critically ill they feel that they need to start the chemotherapy right away to save his life because of how aggressive the cancer is. Although things don't look very good for him I am actually more encouraged this evening that the Lord will preserve his life. We have all that we can do and have put his life in the Lord's hands.
Thanks again for your concern. It is greatly appreciated.
May 2, 2009
Bryce still remains in critical condition. He was actually a little more alert today than yesterday and demonstrated a very good attitude considering everything - he even had a little bit of humor. His kidney function also improved slightly. Also his jaundice didn't seem quite as bad to us today. This was all very encouraging to us.
However, he continues to have severe abdominal pain. He is not exchanging gases like he should - this didn't really improve today, but it didn't get worse either. If it gets worse they will need to intubate him and put him on a ventilator. Unfortunately one of his lungs has greatly reduced capacity, which may be the result of the cancer??? He takes frequent shallow breaths.
He is on so many IV medications to keep everything stable - he is now back on two IV blood pressure medications to keep his blood pressure up.
They did a couple of CT scans today on his abdomen, but they didn't reveal anything significant, which is good, but they don't know what is causing all of the pain unless it is the cancer.
Kendra and I have put his life in the Lord's hands and trust that His will be done. We feel hope that he will live through this, but this is still very life threatening.
We greatly appreciate your faith and prayers in his behalf.
However, he continues to have severe abdominal pain. He is not exchanging gases like he should - this didn't really improve today, but it didn't get worse either. If it gets worse they will need to intubate him and put him on a ventilator. Unfortunately one of his lungs has greatly reduced capacity, which may be the result of the cancer??? He takes frequent shallow breaths.
He is on so many IV medications to keep everything stable - he is now back on two IV blood pressure medications to keep his blood pressure up.
They did a couple of CT scans today on his abdomen, but they didn't reveal anything significant, which is good, but they don't know what is causing all of the pain unless it is the cancer.
Kendra and I have put his life in the Lord's hands and trust that His will be done. We feel hope that he will live through this, but this is still very life threatening.
We greatly appreciate your faith and prayers in his behalf.
May 1, 2009
Today has been quite an emotional day for us regarding Bryce. This morning we found out that he is in septic shock and that his condition is very critical. The doctors were very concerned about him. This morning his liver and kidney were shutting down. It was hard to see him this morning so jaundiced (yellow) because of his liver problems. His blood pressure got down to about 60/30. He has been out of it most of the day, but will respond to us when we talk to him. He is currently on four IV antibiotics and one oral antibiotic.
Fortunately his blood pressure has stabalized with the medications they gave to him and they have been able to reduce the amount of medication that he needs. Another positive sign is that is kidney function is improving, but it is still not within normal levels.
This evening we were finally able to meet with the oncologist. We were told that Bryce has stage IV cancer - a very aggressive non-Hodgkins lymphoma. (Before we were told that it was in early stages and very treatable.) They suspect that the cancer is in his liver, bowel, stomach, esphophagus, etc. There are still many unanswered questions. They want to start chemotherapy immediately, but can't because he is so ill right now. However, if his condition does not improve then they will start anyway to save his life. They also may have to do exploratory abdominal surgery because they are very concerned about what is going on in his abdomen.
His chemotherapy will consist of 6-8 sessions once every three weeks.
We continue to trust in the Lord and feel that ultimately Bryce will be healed, though he may have medical issues throughout his life. However, we accept the Lord's will. We know that the Lord blessed him to have a special angel, his fiance Jerica, come into his life at this time.
Thank you for your continual faith, prayers, love, and support. It is wonderful to have wonderful family members we know are there for us.
Fortunately his blood pressure has stabalized with the medications they gave to him and they have been able to reduce the amount of medication that he needs. Another positive sign is that is kidney function is improving, but it is still not within normal levels.
This evening we were finally able to meet with the oncologist. We were told that Bryce has stage IV cancer - a very aggressive non-Hodgkins lymphoma. (Before we were told that it was in early stages and very treatable.) They suspect that the cancer is in his liver, bowel, stomach, esphophagus, etc. There are still many unanswered questions. They want to start chemotherapy immediately, but can't because he is so ill right now. However, if his condition does not improve then they will start anyway to save his life. They also may have to do exploratory abdominal surgery because they are very concerned about what is going on in his abdomen.
His chemotherapy will consist of 6-8 sessions once every three weeks.
We continue to trust in the Lord and feel that ultimately Bryce will be healed, though he may have medical issues throughout his life. However, we accept the Lord's will. We know that the Lord blessed him to have a special angel, his fiance Jerica, come into his life at this time.
Thank you for your continual faith, prayers, love, and support. It is wonderful to have wonderful family members we know are there for us.
