Joey's surgery went well

Joey's port insertion went as well as can be expected yesterday. He was willing to take the oral medicine which really helped. Joey went off to the operating room in the arms of the anesthesiologist without a hitch.

We went home from the hospital at around 12:30 or so and he happily went to sleep on the couch after watching a video. Last night he did complain of pain in the arm and expressed that he wished he did not have to go to the doctors' so much.

Even Nathan knew that he was to be extra-nice to his big brother. Yesterday, when the two were eating a bowl of raspberries, Nathan offered the last one to his big brother.

I'm at work today and Joey is at preschool (his choice) with his aunt Linda accompanying him there the whole day. Pray that the pain will subside in his chest and arm and that the site would heal nicely without any complications. (Joey has refused to take any Tylenol.)

We have been very grateful to you all, our friends and family, for your love and support. Big thanks to Jon's parents who have come out two weekends in a row to babysit so that Jon and I could get some time together and to my mother and sister who drove up from L.A. to help out these next few days.

Love,

Jane, Jon, Joey and Nathan Kuo Paris

Joey's surgery has been scheduled

Dear Friends,

We found out a few days ago that Joey has been approved for the chemotherapy medicine, Avastin!

Joey will be undergoing surgery on Monday for placement of his port (to facilitate ease of infusing the Avastin). Because Avastin works against the formation of new blood vessels, we have to wait two weeks between the surgery on Monday and his first chemotherapy treatment to allow for complete healing of the port site.

We don't know exactly when his surgery is on Monday because the schedule is not decided until the night before. You can pray that Joey get an early operating room time so that he will not have to go without food or drink for too long on Monday. You can also pray that he will not freak out when undergoing anesthesia like he did last time.

Thanks,
Jane

Joey Update 10.14.2009

Dear Friends,

First of all, a quick apology to those of you who have been awaiting news regarding how our appointment went on Monday with Joey's oncologist. I guess it can interpreted as a positive sign that even though we do covet your prayers, we did not feel the need to get this email out as quickly as possible. I've been taking the time to gather my thoughts these last few days and anticipating what these next 9 months or so may look like for our family.

Our meeting with Dr. Fisher and Joey's treatment team went as well as can be expected. Dr. Fisher spent a long time with us. He began by having us look two screen shots of Joey's MRI's—one from nine months ago and the other from last week. It was clear to the naked eye that his tumor had grown. Dr. Fisher talked us through what the different treatment options were and quickly steered us to another course of chemotherapy.

The plan is to get insurance clearance for this medicine (Avastin) and then proceed with surgery for a port in Joey's chest so that the medicine can be infused. We are hoping that all this can happen in the next few weeks and that Joey will begin treatment next month at the latest. The plan is that he would get the infusion once every 2 weeks for about 8 to 10 months.

You can pray that the Avastin will be approved by our insurance company (it is quite expensive). You can also pray that Joey will tolerate the port surgery well, as he had a hard time undergoing anesthesia last week. Although there are some side effects to watch out for with Avastin, it does not carry the dreaded side effects of decreasing the immune system or of nausea.

Avastin inhibits the growth of new blood vessels. The tumor in Joey's brain has a lot of blood vessels so the idea is that this drug would cut off blood supply to the tumor. Even in the past when I've thought about Joey's tumor, I pictured the tumor collapsing on itself. As I sat listening to Dr. Fisher describe how Avastin works, it was a word picture of how I had imagined healing for Joseph. The tumor would get weakened from the inside and then implode. May this indeed be the case.

With joy,
Jane, Jon, Joey and Nathan Kuo Paris

Troubling News 10.9.09

Friends and Family,
I had been planning to send out the message below (which I still invite you to read) but in the meantime we received a call from the office of Joey’s oncologist with some troubling news. The MRI we went in for on Tuesday showed some growth in the size of the tumor. We have a meeting scheduled next week to talk with the oncologist and will send another update after that.

Once again we are reminded of all the things we take for granted and how much is out of our control. Jane and I have been reflecting a lot on how much we love our boys and Jane even said recently that, if given the choice, she would without hesitation trade her life for Joey’s. This decision is not one we can make but we may face many other big decisions in the days ahead. Please pray that God would give us wisdom in this time and that we would experience His presence and comfort. Finally, please join us in praying that the tumor would start shrinking again.

Love,
Jon, Jane, Joey and Nathan

_____________________________________
Written Wednesday Oct 9, 2009

Dear friends and family,
Over the last few months I have been learning to wear many different hats. Since founding Todoroo (a software startup providing mobile mentoring... think a todo list informed by coaches, mentors and friends) I have had to figure out how to negotiate contracts with large organization, prospective employees and potential investors. I have had get smart about managing software developers (who are pretty different as a group than IVCF staff) and have continued to write code myself.

At church I continue to have opportunities to serve as a small group leaders and have had the opportunity to give an occasional sermon. But the more important hats I am wearing are those of husband and father.

Jane and I recently celebrated our 10th anniversary and in an all too rare experience, my work actually helped me prepare in advance for what become one of the more wonderful weekends for us as a couple. One of the mobile mentors I have authored (Relationship Roo) was designed to give all the advice that Jane often gives me, but I often forget to implement in our marriage. It has been great to have reminders to do many of the simple things like arranging childcare for special dates date, making reservations well in advance and taking time to ask and really listen to how Jane is doing when she comes home from work.

Maybe the most important hat I am wearing is that of father to two growing boys. Joey and Nathan continue to delight Jane and I. Joey is creative, proud and more or less the alpha male of the preschool (all 32 lbs of him). Nathan, now 20 months is at one moment the cutest little guy you have ever seen and at other times a manipulative little sucker flailing and yelling in attempts to get his way. Oh the joys and challenges of parenting!

Yesterday, I had to face one of my more significant challenges in parenting as I brought Joey to get his regularly scheduled MRI. When he was younger it was easier. He didn't know what was coming most of the time and his medical port made it really easy to administer medication. Now that he is older, he is more aware of the process and all that remains of the medical port is a memory and a scar.

Yesterday morning he was emphatic that he didn't want to be sedated with the mask nor did he want to get an IV. The anesthesiologist, nurses and I tried in vain to convince him that wearing a mask would be cool. “Pilots, fireman and astronauts all wear masks.” “It will smell like strawberries!” He was not convinced. Restraining my precious little boy while he struggled to resist the administration of anesthesia has to be one of the most un-natural and difficult things I have ever done.

I took him home and he has shared that mask scared him a bit, but for the most part he seems fine. What he, just hours before, fought tooth and nail has become one more passing memory.

In the next few weeks we will meet with the doctors to discuss the results of the MRI. Please continue to pray with us that we would once again get a good report.

With Love,
Jon, Jane, Joey and Nathan