Thursday, December 22, 2011

It has been such a long time since we updated this blog. There is so much we failed to report about our experience. I will eventually try to update the blog with things we missed, but for now, here is the latest...

Will's chemo and radiation were finished up in January (2011). It was a very tough 7 months, we will never fully understand what he went through and the trauma and stress it put on his body, but the therapies are finished. He has had 3 follow up appointments since and is totally clear as far as they can tell. He is feeling healthy and has gained back his weight and some. At 6'2.5" 170 pounds was way too skinny. He is back up over 200 now and looks great! He is still working on overcoming the chemical changes his body endured, but for the most part, he is doing really great. He will always have to be careful as he has permanent heart and lung damage from the radiation, but we are told that most of the damage will heal in time. We are just grateful that he is here with us. He is a joy to have around and we love his playful personality.

As for the rest of the family, we are all back together for now. Sam returned home from his mission in September (2011) and is loving sharing a room with Will. They have a great time together and enjoy each others company. They have always been best friends. Mary Kate is on her way to college in January and will be very missed as she is the consummate second mother to our brood of boys. Hunter and Matt are enjoying having the family back together and we are all thrilled how this whole trial worked out in the end. I am sure it will take time to get over all the effects, both emotionally and physically for all of us, but we are grateful for the many miracles, mighty and small, that have taken place to get us where we are now.

Thank you for all you have done for our family. We could not have made it through the trial without your support, love and prayers.

Saturday, January 8, 2011

On to Radiation!

Chemo is finished. We had a party to celebrate the week after Christmas. It was great to have that final day of chemo over for Will. I hope he never has to do it again...EVER!

Chris, Will and I met with the oncology radiologist 2 weeks ago and then again this past Tuesday to get things ready and map out the radiation. They made a plastic mesh cast of his head and shoulders. It is anchored to a device that they screw into the radiation table so he can't move during the treatments. It is fascinating that technology is so advanced that they can do all of this. We were told that they have learned how to bend radiation around organs. What a blessing because most of Will's bulky masses were around his heart and lungs and neck. They told us they can't completely avoid them, especially since Will had masses inside his lungs, but they will be able to avoid much more of the sensitive tissue because of technology. They also did the baseline CT scan to help them map out where they want to irradiate. The oncology doctor, Tiffany Chang, called yesterday and told us that Will will be on 21 gray radiation. Apparently it is at the top of the scale for pediatric radiation, but adults in the past have gotten 31 gray for this condition. The head doctor of the study Will was almost on, as well as the entire tumor board, are in concurrence that the extra radiation shows no signs of benefit and in fact might be cause for future problem in patients who are young. They don't worry as much about older adults receiving higher doses because they don't have their entire lives ahead of them and if there is bone deterioration for over exposure they will never know it because they will be gone before it happens. The doctors all felt that the lower dose is best since William is at the beginning of his adult life. We have been praying for them to be inspired and to know the dosage amounts and the length of radiation and that they would be as conservative as they possibly could considering Will's condition. They are also opting to treat only the areas that were the bulkiest. This means his chest area around his heart, lungs and trachea and also his neck. They will not be crossing into his abdominal area, which can cause so many problems, from colon cancer (secondary cancer) to sores in his stomach etc.. We feel very good about all of this. It means minimal to speak...with minimal side effects and lower risk in the future for secondary problems. We feel so grateful to have such exceptional care. The doctors at UCSF are cutting edge and working to increase quality and quantity of time for the patients, hopefully complete cure with no future recurrence or secondary cancers. We are grateful they are so conservative and we are confident that this is the right path for Will. Thank you for the months of prayers. We feel them so profoundly. Will has been a trooper. I can't imagine what he has been through. I hate watching him have to struggle through this, but I am grateful that it has not been worse. We see so many children when we are in SF who are so much sicker and it is heartbreaking. The one bright spot I see in all of this is the compassion and empathy that we all gain through this and especially William. I know that he has a bright future ahead and that this experience will bless his life and help him to work with others and love them deeply. What a sweet boy!

I ponder on the meaning of all that we have been through as a family and that which Will has gone through personally. The conclusion I draw is that we are all in the fight of our lives. No one is exempt from the struggle. Our trials reveal to us who we really are. If we don't like what we see, then it is through the grace and love of our Savior that we can change this. We are here on this Earth to learn and our best teacher is most often adversity. God knows how strong we really are and has promised that He will not give us trials beyond our capacities to conquer. To some it may seem odd that a loving God would allow us to have such trials, but if He took away every trial we face we would never grow, never learn. That would be a tragedy. Despite our circumstances, we are trying hard to keep good attitudes. No one displays this better than William. I watch him in his struggles and see the man emerging from this boy I love so dearly. He is truly amazing and he is my hero!

Thank you again for your love, prayers and faith. We are truly blessed to have so many loved ones praying for him and for our family. We love you so much! Happy New Year!

Wednesday, September 1, 2010

Round 3

It has been such a long time since we last updated the blog. We have posted the emails below that we sent out to some back in July, and continue the story in this entry. So much has happened since our lives changed in June, so many miracles so much love!

On the 16th of August Will and Vicky headed down to San Francisco a day early for the 3rd round of Chemo to have a PET scan. It was a great day. After the scan they headed down to the ocean near the Cliff House and the historic Sutro Baths. Will expended most of his energy throwing rocks into the ocean while his proud and content mother cheered him on. There was really nothing noteworthy, but that made it all the more special. It was a “regular” day at the ocean. We ate a nice Mexican dinner in the parking lot over looking the ocean and the setting sun. What a nice memory.

Tuesday morning we were told the miraculous news that the scans showed no signs of tumors. How could this be? And yet, who are we to doubt the miracles that we had been praying for so hard and for so long? We were amazed! The scan showed a completely clear chest and abdomen. We were informed that although they call this complete remission (CR), they still continue on with the treatments. Two more rounds of Chemo and then radiation. We were told that it is their experience that the cancer returns unless they finish up the treatments. We believe this is because although there is no evidence of tumors, there are still living cancer cells which they are not able to see. These cells continue to develop unless treatment continues. Some day scientists will figure out how to see down to the cellular level with their tests. The doctors showed us the differences between the first and second PET scans. It is remarkable. We had forgotten how full of tumors he was at the beginning. It was actually far worse than we remembered. The doctors made us a CD of the two scans lest we forget how advanced Will’s disease really was.

Will has now finished up his 3rd round of Chemo. It seems Will takes longer to recover from the chemo with each successive cycle. This one was his hardest round to date. He felt much weaker and much more nauseous than before. He was also having extreme headaches. We called the nurse and told her that he really hadn’t been out of his room for about a week. She immediately ordered lab tests and told us he really should be rebounding by that point. His blood tests showed his numbers dropped very low this round. To put this into perspective, healthy blood has white blood cell counts of about 9000. After the prior two rounds of chemo, Will’s white blood cell counts were about 500. This renders him nutropenic -- unable to fight off infection. After this third round of chemo, his count was at 100. As a result, the doctors immediately called Will back to the clinic for a blood transfusion last Friday.

We had been warned several times that a transfusion was not only a possibility, but a probability. This made it so very much easier to deal with. Although it is disconcerting to think that some stranger’s blood is put into your child’s body, we had been assured the blood supply is very clean these days and the odds of contracting a serious illness are somewhere around 1 in 6 million. Notwithstanding that, we were still very worried. As the transfusion began, a comfort came upon us. We felt assured clean, life-giving blood had been delivered to our son. With that came an indescribable gratitude for the person who had donated that blood and had given our son the gift of their strength. It was a spiritual experience. Will felt better, stronger, almost immediately. Another miracle in a series of continuing miracles! By Monday Will’s white blood cell counts were back up to 1,700.

Modern medicine really is incredible. The advances of science in our lifetime is truly another of our great miracles. The fact that they are able to find exactly what types of chemicals kill this particular cancer is amazing, brilliant men and women dedicating their lives to the cure. There is no doubt in our minds that there has been divine intervention in these advances. The doctors had expected to see Will at least in partial remission by now because the chemo is just that good at eradicating the tumors and most patients react very swiftly. Will’s miracle is that there is very little scar tissue. With the advanced stage of his disease, they had expected to see much worse. They compared the tumors to a coral reef. At one point they are living, but when the coral dies it leaves behind it’s skeleton. This is what they had expected to see with Will. However, in the scans the doctors were surprised and elated to see that his scaring is very minimal. We attribute this to Will’s miracle; the countless number of people who have joined their faith and prayers with ours, who have fasted for him and sent their positive thoughts his way. We know that you have blessed our lives by giving of yourself for our son. We thank you. We feel particularly grateful to God for hearing the prayers of so many and showering us with miracles and blessings. It has been a very long summer but we are so thankful we have been able to learn so much through this trial. Thank you for lifting us up through the long months with all you have done. We are, after all, the hands the Lord uses to bless the lives of His children.

Coming Home

It would seem that being home after 13 days in the hospital would be such a relief. We were so ready to get out of there. Coming home was extremely difficult. We were nervous about everything. There were no more nurses or doctors to let us know what was normal. Although they were only a call away, we tried to save only our most urgent concerns and questions for them. It wasn’t just the health concerns we were having, but we really were hit with the weight of it all as it came crashing down on us emotionally. We were all randomly lashing out from time to time for no apparent reason and then we would find ourselves crying over nothing. It was very tough. We had a hard time keeping two thoughts in our head, but were able physically to do things. It was so strange. It must be like post traumatic stress syndrome. At one point I said to Chris, “I feel like I just can’t think straight. I feel like I can’t get anything done, and yet I am totally capable. Maybe it is time to let people know we can make dinner for ourselves.” He turned to me and asked me if I just heard what I said. Our family and friends have been so good to us and have provided for our every need over those first few weeks… and continue to do so. Honestly I don’t know what we would have done without the help. We are grateful to you all for everything from faith to food and all the help in between.

Will seemed to do very well from the start. One of our duties here at home is to administer a daily shot of Neupogen until his numbers come back up. It is a bit like an insulin shot, delivered by a short needle just below the skin. It helps boost the white blood cell production in the bone marrow, but it also causes pretty severe bone pain as a side effect. The headaches and lower back pain were excruciating. Again, the UCSF doctors had warned us that there would be times when we would most likely end up in the ER with Will. This time we went in to get pain medicine because taking Tylenol masks fever and Motrin thins the already fragile blood. It was terrifying to walk into a germy ER, a place where sick people go to get better, when your son is at his most susceptible. We made it though and he didn’t get sick. He was able to get some pain medicine and find relief. The bone pain lasts only a couple of days and is gone as soon as he is finished with the shots.

A round of chemo for Will is 21 days. The first 3 days are chemo in the clinic. The first two days he is in the clinic about 8 hours. The third day only takes a couple hours. The Neupogen shots start on day 4 and are given until day 7. Day 8 is another short day of chemo in the clinic and then the shots resume on day 9. By day 14 his numbers come up and he no longer needs the shots. Day 15-21 are pretty normal days for him and he is able to get out a little and live fairly normally. They are the days we look forward to. Will’s second round went very well. He maintained a descent amount of energy and was very happy. In fact, we ended up calling the clinic to tell them things seemed to be going too well. We were told that children are very resilient and it is good and normal. It is when things don’t go well that they worry.

While Will is in the clinic for his treatment those 3 days we stay at the Family House. The Family House is a an organization set up to take care of pediatric cancer patients and their families while they are in the UCSF hospital or at the clinic. It also serves many other families with sick children. They provide housing and a safe place for overwhelmed families. They have two apartment houses very close to the hospital. We feel that we are home when we go down to San Francisco and love all of the people we deal with there.

For the second round of chemo we took Hunter and Matt down with us. Mary Kate had work and a Year Book camp down in San Diego so she stayed with some friends. We had a great trip. The Family House provided us with tickets to some of the local attractions. We went down Monday to get situated and on Tuesday Vicky stayed with Will in the clinic while Chris took Hunter and Matt to the Academy of the Sciences and then went on a bike tour through the city for several hours. They had a great day. On Wednesday Chris stayed with Will while Vicky took the boys to the California Academy of the Sciences and then went to the beach to play in the surf and collect sand dollars. Another amazing day. We look forward to being able to do these things with Will and Mary Kate and Sam too. The 2nd round trip was wonderful. Will tolerated the chemo well and the younger boys had a great time.

Email from July 3, 2010

Today went very well. Perhaps I sugar-coated yesterday's email a bit. It was a very difficult day yesterday. Will's first night of Chemo was very stressful for him, but he didn't want to tell his dad who stayed with him that night. He is such a sweet boy and was trying to be thoughtful. Chris lay awake most of the night trying to listen for him and make sure he was awake if Will needed him. Lynsey and I spent the night at the Family House, talking, crying, praying for Will and reading the scriptures together. Part of the scripture was from Moroni chapter 7. This is how it reads:

27 Wherefore, my beloved brethren, have miracles ceased because Christ hath ascended into heaven, and hath sat down on the right hand of God, to claim of the Father his rights of mercy which he hath upon the children of men?
28 For he hath answered the ends of the law, and he claimeth all those who have faith in him; and they who have faith in him will cleave unto every good thing; wherefore he advocateth the cause of the children of men; and he dwelleth eternally in the heavens.
29 And because he hath done this, my beloved brethren, have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.
30 For behold, they are subject unto him, to minister according to the word of his command, showing themselves unto them of strong faith and a firm mind in every form of godliness.

What a great scripture for this situation. I have watched continual miracles happen to get us where we are now. More on that later. Yesterday we also talked to Sam... sorry if I am repeating myself. It was so difficult. He was devastated. We cried a lot yesterday. Please remember Sam in your prayers and fasting too. It was a sweet experience for me to go back to the Family House last night after a tough day and read this scripture:

18 And it came to pass that when Jesus had made an end of praying unto the Father, he arose; but so great was the joy of the multitude that they were overcome.
19 And it came to pass that Jesus spake unto them, and bade them arise.
20 And they arose from the earth, and he said unto them: Blessed are ye because of your faith. And now behold, my joy is full.
21 And when he had said these words, he wept, and the multitude bare record of it, and he took their little children, one by one, and blessed them, and prayed unto the Father for them.
22 And when he had done this he wept again;
23 And he spake unto the multitude, and said unto them: Behold your little ones.
24 And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and encircled those little ones about, and they were encircled about with fire; and the angels did minister unto them.

Today Grandma and Grandpa brought the kids down to visit. It was so great to see them after a long week. They miss their brother and family. Right now is a time for us to stretch and grow in ways that are hard and uncomfortable, but there is no other way and we must learn to have faith and know that God, our Father is in charge and will bless our lives as we struggle through these trials. It is not our loving Father's plan to ignore and cause pain, but to comfort and console through His Son when we are in need of strength and wisdom. Why does it have to be so hard. Tonight I was texting Katie and told her it is like taffy. It must be stretched and pulled twisted and then stretched and pulled and twisted again until it is smooth and silky. Without all the effort it is just a sticky soft mess. These trials are made to pull us all together and make our lives sweet. Will said the other night that he was grateful for the trial because without knowing sickness, how can he truly appreciate his health. Wisdom beyond his years. I am so proud of him and his patience in this trial. The kids are having a hard time dealing with this too. They aren't quite sure what to think and are struggling to understand. They are trying hard to maintain a happy existence, but it is stressful on them. In the end we hope this experience will bring us closer as a family and more grateful for the amazing blessings we have in our lives.

Email from July 2, 2010

Will's chemo started early this morning. They have him on 8 chemo medicines. He was wiped out after the introduction of these medicines into his body. He is such a sweet boy and it is so difficult to watch him go through this. We are all exhausted from the week-long rollercoaster ride. The prognosis is very good. He seems to be responding even after such a short amount of time. He rarely coughs today and has not been complaining about his heart hurting him. We aren't quite sure what to expect, but we are hopeful that within a week the tumors will start really shrinking.
We were able to talk to our Sam today. He had a very hard time with the news being so far away in Texas. Please pray for him too. We talked to him about everything. He was most concerned that everything would be alright. We assured him that the cure rates are very high and that Will has had a blessing and that in the end, all would be well. We told him to seek out a blessing from his companion, District Leader or Mission President. We talked about the fact that Will wants him to stay on his mission and the best way he can help Will right now is to pray for him and to be completely obedient and work hard. The focus on his mission will keep his mind off of Will and I know that this will help both of them in the end. It was the hardest call I have ever had to make.
The care Will is receiving is so amazing. Everyone we have met here has been so supportive and loving. The staff at the hospital treat us like family and tend to our every need. We are truly blessed to be here. It is not only the hospital but the community at large. We are staying at The Family House, like the Ronald McDonald house. The people there have been so gentle and sweet. Chris and I were waiting to catch the shuttle back to the hospital and some man who was walking up the street said with great compassion, "This is a great support you have here in this house." We are constantly rubbing elbows with angels.
Thank you all for your prayers, love and support. We feel the sustaining power you call down upon us from Heaven and are ever so grateful. We love you!
The Holdens
Thursday July 1, 2010
Last night was rough for Will. He was up coughing a lot and had quite a bit of chest pain. They monitored him carefully for oxygen levels and they were substantially low. Due to this and because of the touchy situation with his airway they decided to try the needle biopsy again. They used a ultrasound to maneuver a man sized needle which is spring loaded and fires into the mass. This did the trick. They took 2 tissue samples. They also inserted a pick, sort of an IV type line, into a vein into his upper right arm and delivers his medicine directly to where it's needed. It threads nearly to his heart. Later in the day he had a pet scan. After fasting for 16 hours, they administer a raioactive sugar type mix into the blood system. They told him he would have to marinate in that for about 45 minutes. This gives the cocktail time to spread throughout his body. They do this because tumors are aggressive cells and love the sugar and soak it all in. The full body scan this time took about an hour to finish. The radioactive elements glow ink the xray and indicates where the cancer cells are located. He had a very good nap lying flat on his back, which he has not been allowed to do for the past couple of days. No coughing the whole time. :o)
This took most of the day, but finally he was able to eat about 5:30. The doctors came in about 7 with the results of all the tests of the week. The diagnosis; Hodgkins lymphoma stage 4B. This cancer has a 95-100% cure rate. We like those odds. The doctor said that even though it is an advanced stage cancer the cure rates are excellent and the same as early stage. Stages are determined by where they find the tumors. The 4 in the stage was determined because he has tumors both above and below his diaphragm. The B is when it crosses over also into other organs. In this case he has tumors in his lungs. The fact that he has them in his lungs is not any more of a problem than the others because they are treated the same way and are the same type of tumor.
Because this cancer has shown to be very aggressive, which oddly enough is also good, they are starting chemo tonight. This is an excellent hospital on the cutting edge. The doctors have been amazing. This is not an ego trip for the doctors. This is a teaching hospital and all the doctors work in groups and work brainstorming and making sure the patients have everything they could possibly need to recover. They are networked with oncologists across the entire country. We are so happy here and feel that William is getting the best care he possibly could. They will be administering 2 rounds of chemo over the next 8 or so days. They said he will be exhausted the week after, his body will begin to regenerate the second week, and the 3rd week he will be feeling pretty good. Then it will start over again. This will continue for about 6-8 months, possibly a year. When the chemo is finished he will have radiation therapy. Besides the exhaustion, he will end up loosing his hair and his immune system will pretty much be non-existent. Please be excessively mindful of this if you visit. They said that it is far more likely for there to be a bad problem if he is to get a cut and that gets infected, but a cold will more than likely put him in the hospital. Sorry if I am not making sense. I pull the tired card!
They showed us the pet scan of his body and it looked like he was wearing armor around his chest and neck. The tumors are wrapped around his heart, his lungs and his windpipe. The reason they didn't do the surgery is because if he went under and the muscles relaxed around his trachea, even the inserted tube wouldn't have prevented life threatening problems of the tumors closing off his trachea. Untreated there is no way this cancer wouldn't take his life. We feel the Lord was very mindful in the timing of all that has happened. We know that all will be well. We feel completely at peace tonight knowing that this will turn out well. We are not excited to be on the path, but know that we will all learn so much through the process. The Savior suffered even this for Will and for the pain we all feel for him at this time. He will comfort us and care for us. We are grateful to feel wrapped in his loving arms.
Thank you again for all of your prayers, fasting, thoughts, well wishes and concern. We couldn't be in a better place for him.
We love you all!