June 8, 2009

This evening is one of the more difficult updates on Bryce I have had to write. It has been a very emotional evening with many tears shed. Although this is difficult I feel that it is therapeutic for me to try to write the feelings of my heart to share with you. I feel that you have been so supportive through all of this that it is appropriate to share my (our) tender feelings.

It seems that Bryce has really deteriorated in the last couple of days. It is amazing to me that just a couple of days ago he was doing relatively good and how quickly things can change. His appearance seems worse to us. He is retaining a lot of fluids - he has about 16 extra pounds of fluid on him now. They pulled off three liters of fluid from him yesterday during dialysis, but couldn't take any more because his blood pressure was dropping too much. He also now has fluid in his lungs and has pneumonia.

We are grateful that his white blood count has dropped to 22,000 from a high of 55,000 a couple of days ago. However, he continues to have a low grade fever. So far the blood cultures have not come back with any bacteria, but the infectious disease doctors are looking at changing his current antibiotics. His bilirubin has remained at 23 the last two days.

The CT scan yesterday was done with Bryce getting the contrast dye through his NG tube and wasn't very precise and consequently didn't show anything significant. The doctors have hesitated using IV contrast because it is likely to destroy his kidney, but they have reached the point that they need to do this to see what is going on to potentially save his life. They should do this CT scan tomorrow.

This evening one of the oncologists met with many of us to discuss the seriousness of Bryce's condition. He was very kind, but also very honest. He reviewed some history, which I will share a part of here. Since January they have been looking for this lymphoma because they suspected that Bryce had it, but it was so elusive. They did almost every test there is and did many cultures and biopsies and they all came back negative for lymphoma (only showed the Epstein Barr virus). They had been consulting with doctors all across the country trying to figure out what Bryce had. We were scheduled to go to the Mayo Clinic in May to see what they could determine. Finally one of the biopsies came back positive for lymphoma, but the pathologists said it was still hard to differentiate. They sent the sample to Massachusetts General Hospital to have it confirmed. It came back as T-cell lymphoma, which was about the time that Bryce went into liver failure.

With this history in mind the oncologists’ concern from the beginning was to know if the treatment was effective since this lymphoma had been so elusive. It is not like many cancers where there is a tumor and they can detect it shrinking following the treatment. The oncologist said the question he has is if the increased liver failure is the result of the lymphoma or is it the result of the chemo. All protocols that oncologists go by is not to give chemo when patients are in liver failure, but they felt they had no choice, if they were going to try to save his life. He said they may be able to tell what is going on by doing a liver biopsy, but wonder if it is worth the trauma to Bryce to do so. Tomorrow the doctors from the various services are going to discuss his situation.

We were grateful to have Jerica and her family with us this evening for this very sobering discussion. Afterwards we had a family prayer and humbly petitioned the Lord that if possible He would still heal Bryce - we have faith that He can do so. However, we humbly and very tearfully put Bryce in the Lord's hands and told Heavenly Father that we will accept His will. We know that it may be a great blessing for Bryce to pass on knowing that it is possible that his quality of life may not be very good after this.

We have so greatly admired Jerica's courage and tenacity through all of this. What a tremendous blessing she has been to both Bryce and to us! She and her family have been there with us through this entire ordeal as well as our family members and friends. What was most tender to us was after the prayer to see Jerica sit on the bed and hold Bryce and weep. Bryce asked that the rest of us leave the room and they were able to spend 30 minutes together. I know that this was a sacred time to this beautiful couple.

In sharing this we want you to know that we have not given up hope that Bryce can still be healed. We know that with the Lord all things are possible. However, we also realize very poignantly the seriousness of the situation. We continue to trust that He will do what is best for Bryce.

In 1990 when Bryce was seven years old he received his third kidney transplant. We believe that this was a great gift to him from Heavenly Father. He had suffered greatly with dialysis as a very young boy and had been on the transplant list for two years waiting for a kidney. At this two-year point I had just been called to serve on the stake high council and when the stake president set me apart he promised me in that blessing that Bryce would receive a kidney. Four days later we received the call that a kidney was available. We know that his was not a coincidence.

The kidney worked fairly well at first, but then Bryce went into serious rejection, just like he had with the two previous kidneys he had received. We then received approval to go to Pittsburgh Children's Hospital for Bryce to receive an experimental anti-rejection drug that potentially could still save the kidney. The night before we were to leave for Pittsburgh Bryce got ill and so the trip was postponed. Then through a wonderful miracle the Lord healed Bryce – he was home from the hospital just a few days later. The kidney has worked well for these last 19 years until this last month.

We know that just as the Lord turned things around completely and healed Bryce back in 1990 that He can do so again, if it is His will. We humbly ask that you continue to pray that Bryce will not have to suffer much longer and that if it is the Lord's will that he will heal him, but if not, that He will take Bryce quickly to Himself.