Dear Friends and Family,
We don’t have any big news, but I wanted to give you all an update about Michael, and fill you in on a few things that are going on as well.
We returned from Houston on Friday. Michael had two weeks of radiation treatment at M.D. Anderson. The radiation targeted the cancer that recently recurred in his eye socket. Unlike last summer, he did not have to go under general anesthesia each day. He is now old enough to sit still for these treatments. Due to the location of the radiation, he did have to wear a mask and the mask was fastened down to the table, so it was uncomfortable and frightening. He was very brave to endure this treatment awake. I will attach a photo.
While we were in Houston, we met with Dr. Peter Zage, a pediatric oncologist who specializes in neuroblastoma. We reviewed Michael’s situation, and talked about possible treatments and the clinical trials he is eligible for based on his diagnosis and recent relapse. Yesterday we met with our primary oncologist, Dr. Amy Pass, and had a similar discussion. We also met with Mark Dungan, who works with NANT (www.nant.org), a neuroblastoma foundation that specializes in clinical trials for children with advanced high risk neuroblastoma. Our next step is to meet with specialists at Cook Childrens in Fort Worth and Sloan Kettering in New York. After these meetings, we will formulate a plan and make some decisions regarding treatments, therapies and clinical trials for Michael.
Michael will have scans and another bone marrow biopsy in about three weeks to determine the progress of his cancer, and the results of those tests will significantly impact what we do next.
Starting today, Michael will begin oral chemotherapy for at least three weeks, until we determine his next course of treatment. He can do this from home, other than weekly blood work and exams.
And now, here are some updates on a few upcoming events:
For those of you in Dallas who have been emailing me about this, the rumors are true. Mike Malone is speaking at our church this Sunday. Our pastor, Father Dannals, asked him to talk to the Adult Sunday School Family Living class about the last 16 months and our experiences with Michael. He has been working on his presentation all week, and you are all welcome to attend. You do not have to be a member of our church to come. It will be at Saint Michael and All Angels Episcopal Church at 8011 Douglas, Dallas, TX in the Parish Hall at 10am. Feel free to email me if you have any questions about it.
This Wednesday, April 13th at 8pm is the Comedy Show honoring Michael at Hyena’s Comedy Nightclub, hosted by Honor Shearer. This should be a very special night, and even if you cannot attend, feel free to buy a ticket to donate to one of Michael’s nurses or doctors. You can order tickets by emailing Honor at email@example.com or calling her at 214-709-7199. You can also email me, too.
Next Friday, April 15th at 11:30am is the 23rd Annual Children’s Cancer Fund Luncheon and Fashion Show benefitting the Children’s Cancer Fund, and Michael was selected to participate, which is a huge deal for him. He recently got to have his picture taken with Troy Aikman and Roger Staubach, who are the honorary chairs of the event. And the picture actually ended up on a billboard here in Dallas. I’ll attach a photo of that as well. It is located at I-30 (Tom Landry) east of Myers N/S facing west. If you would like to buy a ticket, you can go to www.childrenscancerfund.org.
And finally, we wanted to tell all of you about a new friend of ours. Miriam Schober, who is a local accountant, generously volunteered to manage all of Michael’s extensive medical bills a few months ago. The amount of paperwork and stress involved in this is overwhelming, and she has saved us a great deal of time, angst, and money. She gets on the phone every week and battles the insurance companies for Michael and for us, and we owe her a great deal. She has recently started a cake ball business, and we are hoping that those of you in town will try them. Mike and I brought some home a few weeks ago, and our children loved them, as did several of our friends who stopped by that night. Our daughter has just started talking, and while some of it is jumbled, she can say “Mommy, cake ball please!” clear as day. 🙂 Miriam’s email is firstname.lastname@example.org and her phone number is 972-814-6702. They make a great Easter dessert! 🙂
As always, thank you so much for all of the ongoing cards, emails, phone calls and prayers for Michael. They continue to lift us up, especially as we enter this phase of his treatment, which is so uncertain and which rests so heavily on our shoulders.
Special thanks to Evelyn and to Charlotte who, even though I see them every week in Dallas, drove their children to Houston while we were at M.D. Anderson so Michael could have friends to play with while he was out of town (and so Mommy could, too). xxoo
We will keep you all posted as our plans progress.
With love and hope,
Alison & Mike