As you know, my mom has been updating the blog on my behalf. I have asked her to do so because the storm of emotions that I face when I attempt to type everything out is just too much. Updating the blog means reliving each experience, each emotion, every fear and every nightmare.....something I don't particularly have the strength for right now.
I have received some emails asking exactly what was going on. From what I can gather, some of you are confused about the events from the past two weeks. Here is a brief synopsis.
William was cancer free for 4 months. Scans in January showed one small new active tumor in abdominal. Radiation was scheduled to treat new cancer activity and permanently kill old calcified tumors. Two weeks ago William started loosing weight and complaining of abdominal pain. CT revealed that the cancer returned and it came back in the form of 12+ new tumors (all attached to vital organs) the tumor seen in January had grown 300%. William's body is too weak and fragile to do any sort of aggressive chemo. Please read my mom's blog entry to find out more about what we are doing and why http://www.williamkloppersjourney.com/2012/03/meeting-with-panel-of-doctors-is-never.html
Right now our biggest frustration is batteling Williams's health insurance to pay for the items he needs while on hospice. Secondly, we don't have a hospice facility that will except William- most say he is either too young for them, or they won't accept his insurance. We have faith that Dr Andersen and his staff will come to a workable arrangement with local institutions. We will keep you informed.
Friday, March 16, 2012
Road trip...
It is Friday march 16th and I am in the car with Lois and William. We are on our way to El Dorado. I am joining them for a few weeks and will then go back to Indiana for a couple of weeks. My main short term objective is to make sure that we effectively settle in with Hospice support which Dr Andersen and his staff is now coordinating. William will need IV’s and we need to get the process worked out smoothly at home.
Lois’ girlfriends have once again showed their love and commitment and have during the last few days cleaned the house. They offered to go buy groceries, send gas cards, and more, but I stopped them. They have done enough for now, and all we need from them now is a girls’ night out. Thank you - Erin, Hope, Emily, Scotty and Scott for supporting my children. And a special thank you to Noni and Ron for taking care of Heaven and Halo. We will pass it forward. We love you all.
William has fallen asleep in the back of the car listening to Augustana, Maroon Five and a few others of his favorite musicians. I watch my daughter as she drives and speaks. She looks very different from yesterday – her hair is gone! But let me start at the beginning. Yesterday morning they went to the Pasadena Police Department’s helicopter field where Will and Randell got into the helicopter and went for a flight over LA for more than an hour. The boys could not be happier when they got back. The Chief of Police was there and handed William his cap he received when he was first made Chief of Pasadena’s Police Department. And then the Air Patrol Captain took Will on a tour of the hanger and gave Will a PPD t-shirt and baseball cap. Thank you PPD for helping my kids making memories – you are awesome.
Lois is switching the music to her favorites : Johnny Clegg (sweet South African rythm) Wilson Phillips and a few jazz songs. William wakes up and asks us to change it to his songs. Lois hands him the remote to the iPod and he is a happy boy; Lincoln Brewster is entertaining us loud. Very loud. ‘Today is the day You have made, and I will rejoice and be glad in it…where You lead I will follow…today is the day’. And we all sing along for a while.
… back to the story. After the great time with PPD they went to City of Hope (COH) and there was a stage set up. No silly, not for the band. It is St Baldrick’s day and the stage is for the folks getting their heads shaved. Dr Andersen was there and his hair was bleached! Boy he looked funny. But to raise funds he accepted the bets from colleagues and nursing staff. First the bleach, then the W for William cut into his hair, then color it pink and last: shave it short. We adore this man with the big heart and great sense of humor. We have more than one year extra with William because of this man. Please God continue to bless him with wisdom to serve the Pediatric Oncology department at COH the best he can.
So Lois got in the chair on the stage and Will got to shave his mom’s head. After shaving heads of 12 fire fighters two days prior, he is the pro. She was nervous at first and then, all of a sudden remembering why she was doing it, very tearful. Jacques and I are so proud of our daughter; she is a strong woman and a good mother.
I asked her how it feels with no hair. “It’s like having Velcro on your head – when I put on my t-shirt this morning it got stuck a little. And my head was cold last night – I had to wear Will’s beanie. And I am getting a lot of stares”
William said earlier that his mom looks like a dude with boobs. She said that it was not a very nice thing to say. His comeback was: I’m sorry. I meant you look like a dude with fat nipples.
Four hours gone. Four more to go before we get home. We talk about Lois and Randell getting married within the next few weeks. We talk about movies, about buying groceries tomorrow and having a photographer over tomorrow late afternoon. We stop for a bathroom break and watch Will drink his medication - lately he is hiding his pills but says that he has taken it. More music, more sing-alongs. Why does everything feel so normal and right when actually my heart is broken?
Grandma Sally.
Lois’ girlfriends have once again showed their love and commitment and have during the last few days cleaned the house. They offered to go buy groceries, send gas cards, and more, but I stopped them. They have done enough for now, and all we need from them now is a girls’ night out. Thank you - Erin, Hope, Emily, Scotty and Scott for supporting my children. And a special thank you to Noni and Ron for taking care of Heaven and Halo. We will pass it forward. We love you all.
William has fallen asleep in the back of the car listening to Augustana, Maroon Five and a few others of his favorite musicians. I watch my daughter as she drives and speaks. She looks very different from yesterday – her hair is gone! But let me start at the beginning. Yesterday morning they went to the Pasadena Police Department’s helicopter field where Will and Randell got into the helicopter and went for a flight over LA for more than an hour. The boys could not be happier when they got back. The Chief of Police was there and handed William his cap he received when he was first made Chief of Pasadena’s Police Department. And then the Air Patrol Captain took Will on a tour of the hanger and gave Will a PPD t-shirt and baseball cap. Thank you PPD for helping my kids making memories – you are awesome.
Lois is switching the music to her favorites : Johnny Clegg (sweet South African rythm) Wilson Phillips and a few jazz songs. William wakes up and asks us to change it to his songs. Lois hands him the remote to the iPod and he is a happy boy; Lincoln Brewster is entertaining us loud. Very loud. ‘Today is the day You have made, and I will rejoice and be glad in it…where You lead I will follow…today is the day’. And we all sing along for a while.
… back to the story. After the great time with PPD they went to City of Hope (COH) and there was a stage set up. No silly, not for the band. It is St Baldrick’s day and the stage is for the folks getting their heads shaved. Dr Andersen was there and his hair was bleached! Boy he looked funny. But to raise funds he accepted the bets from colleagues and nursing staff. First the bleach, then the W for William cut into his hair, then color it pink and last: shave it short. We adore this man with the big heart and great sense of humor. We have more than one year extra with William because of this man. Please God continue to bless him with wisdom to serve the Pediatric Oncology department at COH the best he can.
So Lois got in the chair on the stage and Will got to shave his mom’s head. After shaving heads of 12 fire fighters two days prior, he is the pro. She was nervous at first and then, all of a sudden remembering why she was doing it, very tearful. Jacques and I are so proud of our daughter; she is a strong woman and a good mother.
I asked her how it feels with no hair. “It’s like having Velcro on your head – when I put on my t-shirt this morning it got stuck a little. And my head was cold last night – I had to wear Will’s beanie. And I am getting a lot of stares”
William said earlier that his mom looks like a dude with boobs. She said that it was not a very nice thing to say. His comeback was: I’m sorry. I meant you look like a dude with fat nipples.
Four hours gone. Four more to go before we get home. We talk about Lois and Randell getting married within the next few weeks. We talk about movies, about buying groceries tomorrow and having a photographer over tomorrow late afternoon. We stop for a bathroom break and watch Will drink his medication - lately he is hiding his pills but says that he has taken it. More music, more sing-alongs. Why does everything feel so normal and right when actually my heart is broken?
Grandma Sally.
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