Merry Christmas!

I feel like I should write and expand a little.  I want to write some of the great things that have happened to us this year.  Our support structure is great.   So many of you have shared your love, your concern and your prayers with us.  Emily and I were talking recently, and we both mentioned how we can feel--we know--when people are praying for us.  Our ward fasted specifically for William and we have had many people offer help.  Friends and neighbors and "Secret Elves" have watched the girls, helped with laundry, brought us meals, and holiday treats.   We are grateful.

Another highlight of the season came from a foundation called Mac's gift http://www.macsgift.com/.  Mac Boyter was a three-time cancer survivor who was touched by the children he met during his treatments, and he started a foundation to help them and their families at Christmastime.  Three years ago, just after Liam was diagnosed,  we were told about the foundation the night of their Christmas party.  Not knowing what to expect (and not having very good directions) we showed up toward the tail-end of the party, and we were overwhelmed.   One of the organizers had been waiting for us and while we were too late for some of the games and activities, they rushed us around getting us food and gifts and helping us meet key people.  During the Christmas party, all of the kids get a ticket into "Santa's workshop" where they get to pick out a toy.  Our kids were pretty much the last ones in and volunteers led them around the room piling them with toys.  We found our later that another volunteer had previously set aside some 'bigger' toys which they helped us sneak into the car without the children noticing.  They were spoiled that day. We were spoiled that day. Now, it really is our christmas. (and we are sure to be there on time :)

The Christmas party is a two day event where Mom and Dad get a beautiful catered dinner and the chance to pick some very generous gifts the night before the family party.  The gifts we get are enough for a whole christmas, but aside from that, this year it really was the thing William was excited for.  This year's party was held in the (huge and impressive) addition to the NewSkin building in Provo. We drive by it on the way to the kids' school, and William kept a running countdown--not to christmas--but to the Mac's Gift party.  There was pizza and games and prizes and friends and the BYU basketball team and Santa and lots of fun.

Probably most importantly, our family is what keep us going.  I've heard a couple of times recently people talking about how in Utah it is hard to have a 'normal' social life because there is typically so much family around.  One one hand, I see where they are coming from.  For us, our closest friends are family and the majority of our social time is spent with family, but I count that a great blessing.  Emily's mom has, throughout this whole ordeal, been heroic in her willingness to drop everything to make the 6 hour drive and be here for us.   Whenever we have needed her.  It is an invaluable comfort we can never repay and cannot thank enough.  Emily's sister lives nearby and she is our go-to for babysitting, laundry services and that socialization that Emily, and the kids, need and value so much.  All of our siblings, especially those that are close, have come through for us when we have needed them, have been so understanding when we have held them back at a sneeze's distance, and have provided friendship and comfort.  With all the constraints of distance and time, I'm grateful for all that people do.  My parents, Emily's dad, aunts and uncles, cousins and grandparents, I can feel the angst as they tell me how how willing they are to do what they can and how they wish they could do more.  I thank you.  Far from feeling that family 'interferes' with our social life, I wish I could see our family more.

I truly feel that we are very blessed.  I feel supported by God, by friends, and by family.  We all have our crosses.  But Christmas is a great opportunity to remember why we carry them and to see all the people who help bear our burdens.

Thank you, all.  And Merry Christmas!

William's treatment plan

So here goes... William began Nov. 1 with weekly chemo. They put him under sedation and administer the chemo directly into his spinal fluid through a lumbar puncture. This is called intrathecal chemo. He has had this done many times over the last few years but previously only with the chemo called methotrexate. Now he gets methotrexate, Ara-C, and hydrocortisone. William had severe headaches the first week. It was probably because of having two lumbar punctures in one week and too much exertion right after it. could also be a symptom of his relapsed leukemia in the central nervous system. William also started a 28 day pulse of a steroid called Dexamethasone. Between the steroids and the chemo William felt miserable the first two weeks. He was in so much pain that he couldn't walk. After the first two weeks the pain subsided and the hunger began. In the first month William gained 6 pounds. He was very tired, and very emotional. He went to school a few days, sometimes only for a few hours. Before he could start the second phase he had to have no countable leukemia blasts in his spinal fluid for two consecutive lumbar punctures. There was still a little bit in the 3rd week, so a fifth lp was added. Week 4 and 5 showed no leukemia blasts. Starting with week 5, William began the second phase, it lasts 6 weeks. First week: Mon-Wed in patient for intravenous high dose Ara-C (chemo). An intramuscular shot of Erwinia (chemo- previously Peg asparaginase, but this chemo is no longer available and now Erwinia is used.) Then a subcutanous shot on Thursday of Neulasta. This is a drug that stimulates the bone marrow to make white blood cells faster. The chemo makes his blood counts drop, this brings it back up in time to have him healthy before they start over again. Week two we go to clinic to get Erwinia shots on Monday and Thursday. Week 3 no chemo! No meds! No shots! just a blood draw to check his labs to make sure he is ready for the same 3 week set to start over again. First time around William came home on week 5 with high counts. By the next thursday when he went to clinic for his second shot his counts had dropped very low. His ANC was 0 and he had a fever, which meant he had to spend the night. He also needed a platelet transfusion and the next day a packed red blood cell transfusion. Fevers lasted all weekend. He was also throwing up. Saturday evening he felt better and was able to come home Sunday morning. the Neulasta caught up to him by then and his ANC was 800. (William has to stay in the hospital whenever he has a fever of 101 and an ANC less than 500). We are now in the hospital for the second high-dose patient stay. So far everything is o.k. He is tired. Got a pretty bad head ache. This chemo is given 4 times every 12 hours. After it they have to wait 6 hours and then give him a shot of Erwinia. They wait an hour to make sure there are no bad reactions, then we can go home. We got in early today, so we should be able to leave early Wednesday morning. I'm hoping by 8 or 9 barring any complications. Poor kid. He has to be hooked up to an iv the whole time. The chemo runs over 3 hours each dose, and he gets maintenance fluid in between. He has to take anti-nausea meds every 3 hours. Zofran gives him a head ache, so they alternate with Ben/Phen. He also has to get eye drops every 3 hours because the Ara-C is bad for his eyes. Eye drops are hard. He hates to do it. He hates gettin poked. He freaks out every time he has to have his port accessed. He freaks out before every shot. Its awful. This is a lot harder on William than it was the first time. He knows now what is going on. He doesn't understand why it is happening to him. He cries about how unfair it is. He cries because he is scared of dying. He cries for other kids who have died from cancer. He cries because it is hard, and it hurts, and he's missing out on things. He doesn't understand why God chose this to happen to him because he is a good person and he only does bad things sometimes on accident. He says he doesn't deserve this harsh of a life. I agree with him. He doesn't deserve this. This is a harsh life. Its really hard for us to see him go through this emotional struggle. I don't know what to do about it. This is hard for Julia. But She has been more patient than usual lately. Either that or I don't notice her because I am also having a hard time. Poor Jenny has back-tracked on potty training and sucks her thumb even more now. She eats with her thumb in her mouth. It would be funny if it weren't so sad. We appreciate that so many of you keep William and our family in your prayers. Its harder, its scarier, its sadder this time for us. I appreciate that you ask how he is doing. I never know what to say though. So please don't be offended if I sound curt when telling you he is fine. I just don't want to go into the whole emotional explanation that life stinks. I don't like to relive it myself, and I don't like to spread bad news to you. Its a strange thing to talk about. Don't stop asking. I want you to ask. I just don't usually want to answer. I'll try to keep the blog updated.

Bad news

On Monday, Oct. 28, William had a routine lumbar puncture. He's been doing them every 3 months. They put medicine directly into his spinal fluid and also take a little out to test. It was a quick visit. Everything went well. Liam seemed really healthy. Shortly after we got home William's doctor called us. Its never good for the doctor to call. Usually a nurse or secretary calls. She told us that the lab tests showed leukemia in William's spinal fluid. His cancer has relapsed. We spent all day at the hospital Wednesday doing multiple tests. We were lucky to find out that the cancer is not anywhere else in his body, only in the Central Nervous System. We were especially relieved to find out that it has not returned to the bone marrow, as that would have been a much scarier prognosis. William had another lumbar puncture on Wednesday and found that the leukemia had progressed so quickly from Monday to Wednesday, that his treatment needed to begin right away, rather than wait until the next monday as we had planned. He received chemo with the lumbar puncture anyway, but returned Thursday to receive more chemo through his central port and he also started a new steroid that he will be on for 28 days. William has had a really rough few days. He has been tired, nauseated, had terrible headaches, stomach-aches, and now is having extreme leg pain from the steroids. The plan is to have him do a more intense regimen of chemotherapy that will last a year, then he will do radiation, then have another maintenance period for a year similar to what he has been on this last year - but a little harder. this is scarier than the first time around. I had always been relieved that William's body handled the chemo as well as he did and wasn't as concerned with long-term side effects. This time he is getting harder chemo for longer and the fact that it is concentrated in his Central Nervous System (brain) makes me worry a lot. Please pray for William. Pray for his doctors. Pray for our sweet girls. and pray for Mark and I to make good decisions. Thank you for your support. It means so much to us.