Finding peace amidst chaos
The farm outside of Philly January 6th, 2021
Two cancer cells still present in his spinal fluid
We found out last night that Lucas’ spinal fluid still had 2 leukemia “AML” cells. The hematopathologist, primary oncologist and the transplant team all separately confirmed this.
The transplant will have to be rescheduled for around 6 weeks from now. The transplant team cannot accept Lucas on Jan 21 because the relapse risk is too high with cancer cells present in his spinal fluid.
Next steps
We are going to have to treat the spinal fluid to eradicate the ‘rare blasts’ that are present. The next steps will likely involve radiation. They have been trying for almost 5 months to get rid of these ‘rare blasts’ but they keep coming back.
We go to clinic today to discuss next steps, but they will include a round 5 of chemo to keep his bone marrow in check. Lucas will need another MRI next week to make sure that there are no clumps of leukemia in his spine, once we are done with that we will meet with the department of radiation oncology at Penn health that is responsible for pediatrics.
Lots of miracles have happened
Lucas’ marrow has been declared a miracle, the fact that he got to a normal state from being in the 80%’s on July 31st is amazing. The fact that he was able to do that here at CHOP, outpatient while also evading infection with no real side effects is also amazing. Dylan has some minor heart palpitations that are above normal, we did not know that. There was risk that she could not be Lucas’ donor, but God answered that prayer as well. We almost did a toxic treatment for Lucas the past couple of months, but trusted our gut and our faith and it brought us here to Philadelphia. Lucas had a seizure on September 28th and thankfully was not in the room alone, God was with him. God has guided Erin and I through this caregiver journey. It is clear He is with us on this journey. Something keeps lifting us up, and I cannot describe it as anything other than spirit.
We asked for one more miracle and God is responding in a way that we didn’t ask for, but that does not mean that He is not delivering.
Unanswered prayers
If Lucas had gone to transplant and they rolled the dice, there were risks that he would have to be treated on the back side, post transplant, which is dangerous. The doctor’s don’t want to do that , they don’t want to chase, they want to put Lucas in the best possible position and then take him to transplant.
We have to believe that unanswered prayers are ok right now. If Lucas went through the challenges of transplant and it did not work because of the spinal fluid, it would have increased the risk substantially that he would relapse.
Finding peace amidst chaos
Staying in the light is a choice. It is an option that we are long. God is there waiting for us, He does not leave and is omnipresent. When Lucas was intubated in the ICU, Erin and I stood over him and I could feel the palm of God’s hand, cradling Lucas. I knew he was going to have Lucas’ back, and I actually felt peace at that point. Lucas’ first words when he came out of intubation were ‘ I’m not going'. Let’s remember that.
When I told Lucas last night that he still had cancer in his spine, and we were going to have to do more stuff, he looked at me for about 2 seconds and said ‘OK,’ then we put on our PJs and went to sleep. Lucas eyes are so pure, he just got to spend 3 weeks with his bro and sis, and had a very special Christmas. He is the toughest kid I have ever met. God gave us Lucas, so let’s keep praying for him.
Lucas is bringing us all together in these trying times. There are so many distractions that do not matter, but saving his life does.
This is the good fight, please keep helping to lift us up.
Prayers
That the leukemia leaves his spinal fluid
That his spinal fluid pressure decreases ( it was high at the last reading )
For his marrow to stay at 0.0%
No harm to his organs or neural cognition from radiation
That we get to transplant at the end of the next round
For the doctors to make the best decisions.
