Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 10, 2020

Thursday, September 10, 2020

Thursday, September 10, 2020

Tonight's picture was taken in September of 2008. Mattie was home between cancer treatments. As you can see, by that point in time, we already needed an IV pole and fluids. As cancer impacted Mattie's desire to drink liquids and even eat. So right from the start, we had to learn the art of giving an IV. Naturally, I was always scared that Mattie or us would step on his IV or tug at it. The issue was the IV was connected to a tube dangling out of Mattie's chest. However, over time, we all got used to having IV tubes around us and dangling from Mattie. We learned to live with them and Mattie had a healthy sense of cautiousness about these tubes. Notice our cat, Nurse Patches. Patches was very bright and in tune to family dynamics. Early on in Mattie's treatment we kept Patches at home, however, after those initial months, we boarded Patches at our vet. Because she needed medication administered for her kidneys and also needed more consistent care than we could provide. Patches lived at the vet for a year before she returned home. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 6,377,540
  • number of people who died from the virus: 191,360

This afternoon, I went for a six month follow up eye exam. In the last exam I had in February, my IntraOcular Pressure (IOP) (the fluid pressure inside the eye) was high. This is a problem as such high pressure can damage the optic nerve. IOP numbers are apparently use to monitor for glaucoma. Glaucoma is a group of eye diseases that cause vision loss and blindness through damage to the optic nerve. 

I have never had eye issues before. I don't wear prescription glasses either. However, everything about today's visit was stressful. So much so that after an hour in that office, it triggered a migraine. I would say the staff and the doctor are insensitive. No wonder that this doctor is retiring. He has lost the art of balancing science and humanity. I found the doctor aloof and cold and was matter of fact with throwing one test after the other at me. I had about five different tests today and during the whole time, he did not explain what on earth he was looking for. He told me he would talk with me after the entire examination. He is lucky I did not flip out, as I could feel my anxiety and anger building. No regard for patients and the daunting nature of being in a dark room, with drops flying into your eyes, not to mention all sorts of lens and machines either near or in my eye. 

Any case, after the ordeal of tests, he started talking to me about angles and glaucoma. In all the years I have been going to this doctor, NOT once did he mention narrow angles. Narrow angles means that the angle between the outer edge of the iris and the cornea is narrower, or more closed, than normal. This can affect fluid flow and thus intraocular pressure. What I think it particularly curious is that I asked for a print out of all the results and his notes today. I want them for my record, as I also plan on finding a new eye doctor. In any case, in his notes, it mentioned that I have a history of cataracts and I am a glaucoma suspect. NEWS to me. I neither have a history of cataracts or currently have this problem. Nonetheless, he scared me enough about narrow angles, that I will definitely have another 6 month follow up, but go to a different ophthalmologist. 

In the normal eye, a fluid called the aqueous humor circulates continuously from behind the iris (the colored part of the eye) to the front, or anterior, chamber of the eye, delivering nourishment to the lens and the cells lining the cornea (the clear part of the eye). The fluid then drains out of the eye through the trabecular meshwork — the eye's filtration system — at the junction of the outer iris and the cornea.

In angle-closure glaucoma, the trabecular meshwork is obstructed by the iris, because the angle where the iris meets the cornea (sometimes referred to as the drainage angle) is narrower than normal. This slows or blocks the flow of aqueous humor out of the eye. Pressure from the aqueous humor behind the iris forces it against the trabecular meshwork.

So he started counseling me today on a procedure called Laser Iridotomy. It is a procedure to treat narrow angle glaucoma. Basically it is a procedure done in the office with a laser, in which a hole is made in the iris, so that fluid can more easily flow to the front and out of the eye. Needless to say, no one is touching me with a laser until I have more information and another qualified opinion. 

Certainly one wants to go to a competent doctor, but for me the personal fit has to be right. This office and doctor are a poor match for me, as they don't embrace the patient as part of the treatment team. If you are going to touch my eyes, I have every right to know what you are doing, talking about, and what the plan of care will entail. 

Meanwhile it was non-stop rain in Washington, DC today. More like torrential rain! 
The rain was so heavy, it looked like snowflakes to me. 

No comments: