Family Update 2.7.2010

Dear friends and family,

 

Numerous times during this past week I thought about blogging or taking pictures to capture the misery our family was in, but luckily for you I didn't.  Whatever I sent would have been little more than just a long whine--a creative, sarcastic and self-aware whine, but a whine nonetheless.  Given the plight of so many in country and through out the rest of the world it is difficult for an overfed, employed, insured, happily-married father of two to make a strong case that his self pity is warranted! 

 

Here is the short version:  Jane and I both were fairly sick (high fever, sore throat, ache... swine flu?) during which our landlord was renovating the apartment to prepare the place for sale. Our shower was out for over a day, our kitchen floor was missing for most of the week and our refrigerator was living in the middle of our living room and in the midst of this the realtor was periodically walking people through the apartment.  From our La-Z-Boy clutching Tylenol in one hand and an ear thermometer in the other I would greet those how might become our new landlord a and offer them hand sanitizer. Good times.

 

Gladly our fevers broke, we have a new kitchen floor and I was able to restore our phone/dsl (which was taken out during construction) by doing some creative wiring in our garage.  My mother and sister- in-law are in town and we are looking forward to celebrating our second son, Nathan's 2nd birthday this week.  We are also praying that we get a good report from Joey's upcoming MRI (on Tuesday).

 

The main thing I've wanted to share about was a rich conversation I had with Joey recently. He continues to be a bundle of energy, whether he is taunting his brother or on the brink of defeating bad guys in an imaginary battle. He is also more interested in learning and is starting to practice reading, writing, counting and doing math (mostly with his money as he is saving up for his next Lego purchase) and is also becoming interested in learning Mandarin.   In the midst of all of this, his more spiritual side is also starting to come out.   Last Sunday I again asked him if he would like to take communion and he said he would. He walked up with me, grabbed the wafer and dipped it himself. 

 

We talked about what it means that Jesus took responsibility for us so that we could be forgiven.  We discussed the symbol of taking Jesus' life into ourselves as he took our death into himself.   He seems to get it.

Many of our rich conversations have happened on our 15-minute morning bike rides to his pre-school.  

During a recent ride he said out of the blue, "I love riding bikes with you."

"What do you like about it Joey?" 

 

"I like talking about things."

"What do you like talking about?" 

"I like to talk about, Jesus and cars and bikes."

"I like to talk about these things too." 

Our conversions about cars often start with some history (Henry Ford, interchangeable parts, the affordability of the automobile and, of course, streets covered with horse poop).   Joey loves the irony that we thought we were rescuing the world from streets covered with horse poop but instead has filled the air with car poop (green house gases etc).  Maybe the irony is more for me, but he at least likes talking about poop.  

Our conversations about bikes usually involve a fair and balanced appraisal of the relative merits of bicycle vs. automobile transportation but usually come to the clear conclusion that the bicycle is vastly superior.

Our conversations about Jesus have also had a similar mixture of the humorous and profound.

 A few weeks ago he came to me and said, "we are never going to die, right daddy?"

Talking to your 4 year-old son with a brain tumor about the inevitably of death is both precious and terrifying.   

I respond, "No Joey, we are going to die, everybody dies, even Jesus died."

"Oh..." he says. 

"But hopefully that will be a long time from now and just like God brought Jesus back to life, he will bring us back to life."

"Who is going to take us out of the ground?"

"God is going to give us new bodies Joey and I am not sure if they are going to come out of the ground or not."

"In Sunday school we learned that Jesus walked through walls."

"Yes Joey I heard that too, I am not sure if we will walk through walls but our new bodies will be very cool I am sure. When God makes things new there will be no more crying, and no more bad dreams, no more sickness and no more dying."

"And no more wars?" He asks.

"That is right Joey and no more wars.  God will make everything right again... That will be a good day."

He then runs off to simulate a war with his buddies at school, I guess he wants to get some more battles in while there is still time. 

 

Overall this past week hasn't been too bad. In many ways being sick is good for me.  When I am not sleeping or whining or watching Hulu I end up praying... praying that God's kingdom will come, and His will, will be done here on earth just like in heaven.   We are grateful for good medical insurance, great hospitals and fantastic doctors but we long for the day when these will no longer be necessary.

Please join us in praying this coming week for a good result for Joey's MRI (Tuesday) and for Nathan as he turns 2.  

With Love,

Jane, Jon, Joey and Nathan

Attached Photos: 

Nathan with one of his makeshift hats

Jane, boys and Great Grandma and Grandpa Paris in Oceanside, CA

Back Home

Hello all,
Joey and I got back at around 4:30 today. Nathan seems to be doing well and Jane's fever broke this evening (hopefully for good).

Thank you for all your love and prayers,

Jon

Ups and Downs

Dear friends and family,

Our life reminds me a bit of the opening line of A Tale of Two Cities... in some areas of our life it really is the best of times and in other areas it is pretty tough. When I think about all that is going well (which I like to do!) I get excited, wax eloquently (or at least rapidly) about all that is going on and my hopes for how it might turn out. On the other hand when my attention turns to some of the short term and longer term challenges we are facing I become more sober and my focus necessarily narrows on the important issues right before us. My prayers alternate form gratitude to intercession, from "more Lord!" to "Lord, have mercy".

So what do you want to read about first? In order to not sound completely superficial by the end I will start with the good stuff.

For me, business is looking very promising. I was recently contacted a phone manufacture and some wireless carriers about pre-installing of one of our applications on their phones. We have sent them our terms and are awaiting a reply. We are obviously praying for the best but are happy to simply have been considered.

Our newest application, Todoroo, made it to the second round of the Android Developers Challenge. There are 200 applications in this round and 30 of them will win a cash prize and get some free publicity from the award. This would be huge for us. Not only would the infusion of cash be helpful for our company, the award would help validate what we have been doing. You might be wondering what Todoroo is since it isn't released publicly and our website isn't up. Below is a fun description that captures both the idea and some of the excitement I have about it.

Todoroo is a solution for the nagging spouse, a secret weapon against evil advertising geniuses and a cure for the common cold all on your phone!

How? Todoroo populates your phone with a team of mobile mentors (we call them Roos) who know you are forgetful, lazy and easily distracted. They help by supercharging your to-do list with the wisdom of coaches, experts and friends and provide creative nudges to keep you moving in the right direction.

Current coaches include a piano teacher, money saving adviser, and a relationship guru. Our 'Paranoid Roo' (under development) will help you avoid getting sick… and yes help you avoid the common cold! Maybe a cure is an overstatement but you get the idea.

We are opening our platform up and reaching out to publishers, authors and folks like you to bring the world a wide range of mobile mentors. The possibilities are endless.

I could go on and on... about some of the content from world class authors that we are bringing into our platform and our plans to serve delegates of the Urbana Missions Convention but it is getting late, the email is getting long and you are wondering what challenges we are facing.

The challenges

The most pressing challenge we face is Jane, Joey and Nathan have all been really sick for the last few days. Joey missed school during the end of last week and will probably stay home through Wednesday. Jane came home sick from work on Friday and has had a fever throughout the weekend. Nathan joined the club on Sunday and continues to be miserable. For some reason I have been spared thus far. As a result we spend most of the weekend camped out in our smallish apartment watching Hulu.com, Pixar and Bob the Builder and driving each other a little crazy. As you can probably tell the pressing challenges we are facing are not all uncommon ones, and for the most part we are hanging in there.

If you have been reading our email updates/blog posts you know that Joey's tumor has grown in recent months. Today he starts his second round of chemotherapy. He is such a trooper. In recent days he has begun to talk more about God and we have caught him singing a worship song that he is making up as he goes. From time to time he observes matter-of-factly that one day Jesus will fix what is broken and bring to life what has died. In moments like these Jane and I often catch one-another's gaze and share a knowing look that we both long for that day to come quickly.

Joey's sometimes silly songs remind me that even in the best of times they are not as good as one day they will be. And in the most difficult times we join our son in putting our trust in Him who has suffered with and for us.

Thank you for joining us in this journey.

With Love,

Jon, Jane, Joey and Nathan Paris

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