A recent update for those who are following. I cannot thank everyone who donated enough. Both the monetary donations and those who have provided practical help such as a meal.

Kai's doctor has recommended that he start a very expensive eye drop. These drops are the first in a series of treatments to hopefully shrink the mass in the back of his eye to prevent further vision loss and hopefully restore some of the vision he has lost. Unfortunately, Kai's health insurance is giving us a very hard time covering the medication. Probably because it is expensive. They denied the request, saying he would have to try five other medications before the one the doctor recommends. We have appealed this decision as the doctor states that these other medications would not be effective. And as we wait to start the medication that will work, Kai would continue to lose vision that he may not get back. The insurance is also making it hard to file an appeal. By telling me to fax paperwork in and then providing a nonworking fax number.

This is why I am eternally grateful to this community. I was able to utilize these funds to pay for the eye drops Kai needs. They are quite expensive and there is no way I could have afforded them without your financial assistance. I was able to pick them up on Monday. I will need to get a second dose for him next Monday and I do not think the insurance will have processed the appeal by then. So if you are able please consider a contribution so I can get the second dose for Kai.

We will have another doctor's appointment in early June to discuss the next steps. These steps will likely include a shot in Kai's eye given under anesthesia and possible admission to the hospital for IV medication. We are looking at ways to shrink the mass as the doctor tells me it cannot be removed without Kai losing his eye.

On the positive side, Kai's tests so far indicate that this is not part of a larger condition as we all had feared. And they have put Kai on eye drops to reduce the pressure in his eye. His pressure has been high for months. He told me after starting the pressure eye drops, "Mom my eye doesn't hurt anymore. I can close my eye now and it doesn't hurt." I didn't even know his eye was hurting him as he had not told me.

Another update. Both positive and negative.

First, I have increased my goal slightly because the ocular oncologist has prescribed Kai an expensive eye drop medication and the insurance is refusing to pay for it. We are appealing this but it will take some time. The oncologist said that it is very important for Kai to start this medication asap to try to preserve his eyesight as much as possible. Therefore, I would like to have the money to be able to pick up the medication right away instead of having to wait on the insurance. I don't want to risk my child's eyesight by waiting.

Second, the oncologist called me and told me that after further review and talking with other doctors, he has re-assessed his initial thoughts. He had thought the mass in Kai's eye was likely cancer. But he now feels it is not. He feels it is the result of inflammation.

So the good news is that Kai will not have to undergo a biopsy and it is not cancer. The bad news is that this type of inflammation in this location is quite rare. It is almost always the first symptom of a systemic disease or syndrome. This is what the oncologist now feels Kai has. He has been prescribed steroid eye drops and likely will soon prescribe steroid oral medication. As noted, I have not been able to get the medication yet as the health insurance is refusing to cover it and it is quite expensive.

Kai underwent labs yesterday to confirm if he has this disease or not. It was very hard for him. They drew ten vials of blood. The person drawing his blood said he has never taken that much blood from one person. Kai was in tears at the end. They also did a chest ex-ray and a urine sample. I am awaiting the results.

Also, the oncologist referred Kai to a pediatric rheumatologist. Normally, this specialist books out four months. But when he heard the oncologist's concerns, he said "I need to see this child immediately." So Kai has an appointment with him tomorrow evening at 5:30 at Lurie. The specialist is concerned enough to stay after his normal hours to see Kai.

I wanted to thank everyone for their continued support. Although this is not cancer, we are still dealing with a long journey full of medical appointments and treatments.

I also wanted to say that I understand and appreciate the spirit under which these contributions are being made. If at the end of this long journey, there are funds left over that were not needed for expenses related to Kai's medical care, I will be donating these unused funds to Lurie children's hospital.

I wanted to thank everyone once again for your support. I also wanted to provide an update for those who are following.

Kai had an appointment on Tuesday with the ophthalmology oncologist. It was a difficult appointment. Kai underwent four hours of photos of his eyes, eye drops, bright lights and even an ultrasound of his eye. He also was experiencing some pain in his eye. I felt so bad for him. But he was quite the trooper.

After all of that, it was discovered that he has a medium-sized mass in his eyeball. It is in the middle to the back of his right eye. The redness we noticed in his eye is actually blood vessels that have enlarged specifically to feed the mass. The mass is causing his eye not to drain as it should. And this is causing his pressure to increase and his to have pain.

The doctor said the next step is for him to undergo a biopsy to see what the mass is made of. This will be done at Lurie Children's Hospital as an outpatient surgery. This will require one trip for the surgery and then three more trips within two weeks of the surgery for follow-ups. At the two-week appointment, we will likely know the results of the biopsy and further treatment options will be discussed. The doctor was not able to tell me at this point if Kai will be able to have any of the vision he has lost restored.

Friends, this feels like a long journey. Lots of appointments and travel. Your support is so very appreciated as we undergo this difficult journey.

I wanted to thank everyone who has helped so far.

I also wanted to update you on today. Today, Kai underwent an MRI under sedation. It went well. The staff at Lurie Children Hospital are amazing! We should get the results next week. I suspect I'm going to be a nervous reck awaiting the results. Continued prayers and support are greatly appreciated.

Hi, my name is Emily and I have a 12-year-old son Kai. In the middle of February, I noticed some redness in the bottom of his right eye. I took him to the doctor figuring it was an infection. She recommended that he see an ophthalmologist. I took him to Lurie children's hospital in Chicago. He has since gone for five visits over the past two months. He has undergone two treatments both of which were unsuccessful. He has seen five doctors and none have been able to determine what is causing his vision problems or how to treat it. He has lost most of the vision in his right eye over the past two months. They are now moving testing and treatment to the next level. He has to undergo an MRI and see a doctor that specializes in tumors of the eye.

I am a single parent of two children and I am disabled. I am unable to drive. The costs of transportation to all of his medical appointments have really added up. Additionally, I have started to require childcare for his 4-year-old brother. Certain tests like MRIs and appointments with specialists require that only the patient and no other children attend

Funds secured here will assist me in paying insurance co pays, transportation to and from Kai's medical appointments and childcare expenses for tests and specialist appointments his brother cannot attend and the occasional take out when we're too tired from a day of medical tests to cook.

I appreciate any assistance you can provide. As well as any prayers during this difficult time