Friday, August 27, 2010


Whoops! I've been so exhausted all week, I didn't realize I hadn't posted since Monday. I thought of the blog each night, but always thought I'd get around to it the next day. We are NOT back in the hospital (doing the happy dance)! William is on his "good week" and the mouth sores have finally healed so the only excuse for not eating is a lack of appetite and I'm trying to convince him that that is not a valid excuse right now! Hah! I hope I'm not creating poor eating habits for him later in life, but I guess that should only be a worry if he actually ate more. He's been working on a Jamba Juice all day, but got a bean burrito down at lunch. A whole burrito! (We celebrate the little things!)

Now the pressure is on for weight gain. He is 59 lbs. and had his final I.V. feeding last night. The I.V. nutrition can stress the liver (his liver already has cancer cells in it) and cause other adverse side effects if given for a long period of time so his doctors don't want him on it more than 30 days. So he's getting a break since he'll very likely be back on it during the month we are in S.F. for the stem cell transplant. I bought him a cool K'nex roller coaster if he can get to 60 lbs. and maintain or improve that for a week. So he sits and looks at the box every day and if you stop by, he'll probably show you the box and explain our "deal" (bribe!). He seems motivated and I let him put it on the table while he eats.

We had a clinic visit on Thursday and met with the doctor. William's blood counts are good and they canceled our Monday visit since things look to be on the rise. We check in next Thursday for round 5--the very nauseating cocktail we had for round 3. The main things I have to watch for until then are bleeding and bruising since his platelets, although acceptable, aren't super high and may drop, necessitating another transfusion.

The past week has been overwhelming in many ways for me and Ryan. It's sometimes difficult to figure out why we feel so stressed and exhausted when William finally gets out of the hospital and things seem to be on the upswing and we are all together as a family. We are realizing that during the stressful times, we are running on adrenaline and focusing specifically on the bare essentials. Then, just when we think things should be getting better, the toll of finding our place in the middle of the chaotic mess of our lives, feels like we are gasping for air at the surface. No one panic. I think it's a normal, but sometimes unexpected, cycle of life and it just takes some recognizing and constant readjustment of priorities to make sure the family is functioning as well as can be (considering all circumstances).

One of the difficult things about our lives right now is figuring out when we need help and with what we need help and what things we need to just slide off our plate completely. Some days, like any family has, are super busy. Many people offer to help, and I will accept help, but we know that there are even tougher days ahead when help will be more essential. Juggling carpools and soccer schedules feels normal and we don't feel that very often these days. There are going to be many, many days when a friend or neighbor will be doing the carpooling and soccer practices and games. So we want to do them when we can. When William was diagnosed we tried to think through our lives for the next year as best we could and think of what our reality would be like. We've put many things on hold that may be still important to us, but can wait a year or whatever time frame necessary.

Today an army of people showed up to tidy up our yard---people from church, people from school, people from the neighborhood. I was amazed and so touched. I was fully intending on being out there to help, but was still in the midst of trying to still get my twins off to school, clean up the kitchen, and get William to eat and take his medication. I haven't had a chance to look on the helping hands website much and I thought 4-5 people would come. It was incredible as probably over a dozen people filed into the backyard and started working. I don't think I even saw all the faces of those who came. Many tasks were accomplished that I didn't even expect to be done. Thank you! Thank you! for lightening our load today and touching our lives with service. I'm getting all weepy which makes my eyes sting which makes me then have to go to bed early and I have a few things I still need to get done tonight! I felt a great deal of love today and I'm so grateful.


  1. Wish we could be there among the Helping Hands--especially when it comes to helping hug, read, play and drive boys around. We'd like to talk more to you both, and maybe the next cell phone connection will be better than the one today with Ryan-- we got dropped twice. :(
    We thought the yucky chemo concoction was for #6. So- does Will prefer nausea to mouth sores? Hope the roller coaster comes soon. We love you all.

  2. Thanks for letting us help. I have some weed pulling aches and every time I bend down to pick something up and SLOWLY come back up, I am reminded to say, "God bless Will". And thank you Will for your service work on Friday, we appreciate you advancing the Angry Birds App a few more levels. :)