Heartbreak

There is no good news today. My parents had a meeting with a team of doctors at 11:00AM, and my dad has typed up the outcome.


“Today was the day when the sugar coating came off. It was the day when Susie and I sat down with our nurse, an intern, the oncologist, the radiologist, the neurologist, the PICU doctor and a palliative representative. It was a meeting that we both were trying to put off, postpone, and avoid at all cost.

Now this is where it gets hard.

Matthews’s brain stem and brain is infected with what everyone believes to be AML (Acute Myeloid Leukemia). It is very hard to pinpoint and be 100% certain without a biopsy, but all indicators are pointing in that direction. The neurologist explained that typically when this happens one of the first signs is that the person seems to “shut down.” Several weeks ago while on the Oncology floor, shortly after we admitted Matthew again, this started to happen. At a shift change, the nurse commented to me that Matthew was not responding to anything. As the PICU doctor was brought up to examine him I saw the look on his face, and we immediately brought him down to the ICU. Since that time he hasn’t spoken, and has been unresponsive to most commands.  He would always listen to Susie when she asked him to squeeze her hand, blink, and perform other simple skills, and his face would grimace in pain when he was moved in the bed.  The looks of pain as he gets moved on a continuous basis have slowly gone away. We don’t know if the chemotherapy is doing its job or if there are other factors involved.

One of the second signs that the brain stem is being attacked is that the eyes seem to go off into a stare, cannot follow simple exercises of following an object, and tend not to coordinate with each other in looking at things. This is currently happening.

A third sign is that complications with breathing are introduced. In reading the blog it is known that he has been intubated for about a week. His breathing patterns are not normal and very difficult, especially with the presence of blood and fluid in his left lung.  Matthew has breathing treatments several times a day which helps in a variety of ways, but twice recently it has caused his blood pressure to rapidly drop. Both times it has been corrected.

There are other things happening to Matthew which directly parallels a brain stem with AML.

The treatment for AML has been chemotherapy and radiation. Chemotherapy is not really able to penetrate the brain to effectively attack and kill the leukemia, which leads us to radiation. Matthew had two treatments of radiation on his brain and brain stem last week in an attempt to kill the AML. The time frame to see if the radiation did what it was meant to do has come and gone with no visible results. Leukemia has an ability to hide out, which makes it very difficult to find. An analogy was given about this, and it’s just like when you find one cockroach you know that somewhere there are fifty more of them hiding in the cracks of the house, not just the one you found.

When they found the AML in his spinal fluids there was a very good chance that it had spread to his brain stem. With the Lumbar Punctures (Spinal Taps) that he had, the doctors were able to eliminate the AML in his spine, but they feared it traveled to his brain stem.

Radiation on the brain and brain stem cannot be directly targeted to the AML. The entire area has to be “dusted” with several rounds of radiation in a short period of time. The downside is that if we do more radiation, there will be more brain cells killed than AML cells, which is not an option.

So for now the treatment is status quo. What happens to Matthew has been taken out of our hands with the inability to perform radiation to his brain stem without causing harm to other areas.

Throughout this whole trial both Susie and I have been well aware of the best and worst scenarios. We would often look at each other with eyes that expressed both hope and fear and knew exactly what each other thought without having to say a word. We knew that if the Lord wanted Matthew back, then he would take him.  We would both stay at the hospital around the clock as we are now for the next year to get our son back, but reality is starting to set in. Our hopes and prayers are for a miracle. One large enough to send the heads of the doctors spinning.  The next day to several days will be the real sign to see if Matthew continues to head the same direction, or if there is a small sign of improvement.

We love all of you who have supported us in this trial. We have felt the power of fasting, prayer, hope and service in more ways that can ever be expressed.

If ever there was a time to dig deep and exercise faith in prayer, it is now.

Mike, Susie, Jenelle, Chad and Hannah”

My heart is heavy, and there have been a lot of tears today. This news is very difficult to receive. The one blessing that I can see right now though, is that Matthew never knew he was this sick. While he was conscious he never knew there was a chance he might not survive his disease. I'm so thankful that he was spared from having that cloud constantly hanging over him since he was diagnosed in September. This is a bitter time, but we just have to press on knowing that if the Lord wants to take Matthew now, we'll see him again someday because he has truly lived the best life.