the hardest day

Monday January 27th

Today was the hardest day yet, by far. The day we finally made the most public announcement about Ethan's diagnosis, and the day that I am getting started on recording all of this on our family blog. I've debated in my mind how to update all of our family and friends who love Ethan and us and want to be praying and in the loop on what's going on -- wanting to be sensitive to our little man's story but also realizing more than ever how God is really the author of our whole family's story and that this is now a part of it. And if I don't tell this story, than none of you will know how God has sustained us, carried us, orchestrated and prepared us for this --- and used so many of you to care for us. And, we need your prayers to sustain us, and ultimately covet your prayers for our boy's complete healing.

Back to today. We knew it was going to be a long day as Ethan was scheduled to have several tests and procedures done --- a CAT scan to see more clearly what the mass on his chest is (possibilities include an actual tumor or many enlarged lymph nodes gathered in that area); an echocardiogram to check his heart and then sedation to have a bone marrow biopsy. The bone marrow biopsy is what will actually tell us what kind of leukemia he has, which will then determine what his treatment will be.

The CAT scan and echo went off without a hitch and Ethan was super brave and stayed still enough for both of those tests to be done relatively easily and quickly. After that we got a chance to check out the play room which had a ton of fun things for Ethan to play with and explore.

Ethan was scheduled for his sedation at 1:15pm but we were taken down probably around 12:30. The team of doctors spent a great amount of time debating whether Ethan should even be sedated because of his chest mass that we learned is covering his aorta, pulmonary artery and trachea. The risk of anasthesia is dangerous because once his body relaxes, there was a risk of the mass collapsing on to any or all 3 of those very critical places in his body - which would result in any number of life threatening situations, including death. They decided that they were going to try and do 3 procedures without sedation due to that risk - placing a pic line in his arm so that he can receive his chemo, a spinal tap of his back to draw fluid and determine if the cancer is in his CNS fluid, and a bone marrow biopsy that would tell us what kind of cancer Ethan has and ultimately determine treatment. However, if they were not able to hold him down for him to be still enough for those procedures, they would have to proceed with the sedation anyway, in order to get these procedures done that he needs in order to save his life.

It is impossible to even describe the fear and emotion of that moment, knowing that this is what we had to do, despite the risk of devastating complications - in order to make it even possible for Ethan to have treatment for his cancer.

We spent the next hour in heavy prayer and emotion, truly feeling sustained by how many people were praying for Ethan and the doctors. And then our doctors came out and told us that it went well! That they did have to give him sedation but he did beautifully, and that there were no complications! Oh the rejoicing!!!!

After taking a little more time than usual to wake up, Ethan recovered very well from his sedation - ate great tonight and was bouncing off of the walls (in a good way!) for most of the evening, finally falling asleep around 10:30.

Tomorrow we will hopefully get to know more about what his specific type of leukemia is and what the plan is for treatment. Right now we know that we will likely be in the hospital for 30 days or so (perhaps less) as the first phase of treatment (called induction) will last that long. We can also expect his treatment to last anywhere from 1-3 years.

Specific things to pray for:
-Ethan's complete healing
-Pray against nightmares and bad dreams - this is a possible side effect of the sedation medication that was used today
-Discernment for doctors in determining a correct diagnosis and treatment plan
-Minds like sponges to really absorb all of this information on what is going on in Ethan's body, treatment plan, etc. We have entered a completely new world of jargon and it is going to take some time to really understand things and I need a mind that is able to process the information we are being given clearly and coherently.