Jon Lee's glioblastoma brain cancer
It breaks our heart to face Jonathan's medical situation and really wish we didn't have to do this, but we are really lost with what to do right now. Here is our story and we humbly ask for any support possible.
Update as of March 2019:
In January 2019, Jonathan was diagnosed with a second recurring brain tumor and underwent another awake brain surgery on February 27th.
Due to complications he underwent another brain surgery on March 5th to have a blood clot removed.
Due to such unforeseen circumstances and after much consideration and talks with close friends, I have edited our goal amount. This total includes the previous cost of $75000 in October 2018, and the additional cost estimate from this round.
The additional estimate is $125,000. This will go towards funding his surgery on February 27th, surgery on March 5th, hospital stay and treatment costs, 9 months round chemotherapy, 3 months radiation, doctor visits, medications, and follow up care. Any surplus will go towards care and follow-up he will need for the rest of his life, such as routine MRI scan check-ups, future treatments, daily supplements and medications.
In May 2014 Jonathan was diagnosed with grade 4 brain tumor, known as Glioblastoma Multiform (GBM), the most aggressive and lethal form of cancer, one that recently took John McCain's life.
Initially, he was told he had 6 months to live, with a 3% survival rate.
In May 2014 shortly after his diagnosis, Jonathan underwent full resection of the tumor through an awake brain surgery, followed with a radiation therapy, 14 months of chemo therapy, and 24 months of clinical trials.
Post surgery he lost his ability to read and write and lost his upper right visual field. Over time, he was able to re-learned how to read and write but his visual deficit remains.
It was definitely not an easy path for recovery but with the help and support of family and friends he has beaten the odds and made it to today, which he is tremendously thankful for. He has been going for routine MRI scan check-ups to monitor his condition.
In July 2018, his routine MRI scan came back with a recurrence.
Jonathan's best chance of a remission is to proceed quickly with another awake brain surgery and possibly another session of radiation and chemo therapy.
The location of this recurrence is on his occipital lobe, and multiple doctors he has spoken with all agreed that after surgery, he will most likely lose his right visual field (hemianopia)--this will affect Jonathan's quality of life as he won't be able to drive, among other things. Additionally, this procedure will put him behind in a career that he enjoys so much. Knowing Jonathan, he's really strong and positive, but this news has been most devastating for him.
He will undergo an awake brain surgery on October 12th, 2018 at Singapore General Hospital.
Difficulty Getting Insurance Because of His Previous Cancer:
Since his diagnosis in 2014, Jonathan has been struggling to even buy health insurance. Since he is now labeled by insurance companies as having a "pre-existing condition" he is not eligible for many health insurance packages, leaving him with no choice but to pay out of pocket for the full cost of the treatment.
We explored all options, including performing the surgery and treatment in the US, Singapore, Japan, or Malaysia.
Going back to his previous doctors in the US would be the best and most effective option. However, this option was too expensive as we were quoted USD 200,000 just for the surgery alone, not including follow-up care, chemotherapy, and radiation. This is an amount he and his family won't be able to afford at the time being.
The 2nd best option is for him to get treated in Singapore, which is also closer to his home, with adequate facilities, and at a much more reasonable cost. The surgery and post-surgical care is estimated to cost more than $75,000 USD.
Currently, we need an upfront payment deposit for the hospital in Singapore before the surgery. This is very difficult for Jonathan as he is afraid of going in debt and being unable to have an income after the surgery.
For those that know Jonathan, he's a caring friend who always helps out in the best way possible. He always puts his family and loved ones first and often times he forgets to take care of himself. He moved back to be closer to family and also help his father who is fighting a different type of cancer. Helping his father financially as well with treatments. Now Jonathan needs our help.
There are hundreds out in the world fighting this type of brain cancer, and we hope Jonathan will survive and heal as soon as possible to encourage those that are fighting, that it's possible to live long.
We thank everyone for all the help, the donation and also the emotional support and also the prayers. Please keep him in your prayers when he goes through surgery on Friday, October 12th.
* second image is the scan after surgery, there's some residual blood in the center left, but doctors said it should heal in 4-5 weeks
Due to complications, Jonathan underwent an emergency brain surgery at 4am on March 5th Singapore time.
After having two episodes of excruciating pain for two nights, the doctors sent him in for a CT scan and discovered bleeding in the brain. The blood clot formed inside his brain cavity where they had removed the tumor. As the blood clot grew bigger, it pressed on his nerves and caused severe pain. The surgeons reopened his wound and skull and drained out the blood clot.
Jonathan spent an additional 2 nights in the ICU and ICA.
I apologize for the late update as it has been quite hectic these past few days.
The good news is, his CT scan from this morning shows no further bleeding and the doctors have informed he can be discharged today to rest with close monitoring for the next few weeks. He is still in pain and very tired but we hope he will continue improving as he gets adequate rest.
To the friends who reached out through messages and calls, and to those who visited us in the hospital during Jonathan's stay, to give us hugs and sometimes food, thank you all so much for checking in on us and for the support!
We hope for a smooth recovery moving forward and appreciate all your continuous support along this journey.
With much appreciation,
He is in a lot of pain but it is being managed and monitored. As it was an extensive surgery, part of which he was awake for, he is quite exhausted and is sleeping soundly right now.
Thank you again to everyone for all the prayers and supporting in every way possible. We have been extremely touched by everyone's kindness, and strengthened by the messages and calls we have received. We cannot thank you all enough for your continuous love and support.
Jonathan's surgery is going on as scheduled at 12pm, 27th of Feb Singapore time(10pm 26th of Feb Chicago time). This will be his third awake brain surgery to remove his second recurring tumor. The surgeons have said his entire right vision field will be removed(which was already impacted during the previous surgery) but we are hoping for a good recovery where he will be fit to live his life as close to how he did before. Please keep him in your prayers, the surgery should take about 5-6 hours.
We really appreciate all the support we have received.
To those that have reached out and supported us throughout this time, thank you all so much!
We might be slow at responding but we truly appreciate all the messages and encouragements!!
We apologize for not being as responsive to messages, we've been quite busy, emotional, and stressed with our lives so we also haven't really been updating Facebook and etc.
I don't usually use/post on Facebook these days, so to keep it simple on one platform, I will try and update on this gofundme page.
We just got news from Jonathan's surgen that the chemotherapy wafer used during surgery will not arrive in Singapore until next week due to unexpected delays. The surgeons are rescheduling his surgery tentatively to next Wednesday, 27th of February 12pm noon, Singapore time.
Jonathan and I will continue being in Singapore until the surgery—staying positive and strong.
Thank you everyone again for being with us in spirit and helping in anyway possible during this journey. We are truly grateful for it all.