An Unexpected Change in Plans

Today I learned a lesson about how my wishes and plans for the future are not always God's plans for me.

At 7:45 am, Dr. Moreira, the transplant doctor currently presiding on this floor, came into my room - I was still sleeping! In my bleary state, he informed me that the majority of the biopsy results had been received, and my "blast" percentage was 10%. Blasts are young, immature white blood cells that can develop into functioning blood cells. In my case, they become the leukemia cells which multiply uncontrollably, causing a traffic jam in my bone marrow, and crowd out the healthy things which live there and should be happening. When too many blasts fill the bone marrow, they then spill into the blood stream and become detectable when blood is drawn. The goal of my chemo rounds thus far were to reduce these blasts to an undetectable level, which has not exactly happened yet.

The biopsy I had in Dr. Mehta's office last week showed 6% blasts - so yes, there was an increase in the blasts over the last week. I was later told that the four percent increase is not a cause for major concern, thankfully. However, 10% overall blasts is considered too high for a transplant to begin, as the disease is a bit too active. Therefore, the scheduled stem cell transplant has been postponed.

Instead, I will endure another round of chemo with the intended purpose of driving down the blast percentage - hopefully to zero.

I was told that the blasts were at their lowest after the second round of chemo - the round that made me feel my worst in this journey - extreme fatigue, no appetite, mouth sores, bloody noses, etc. along with blood counts at their lowest (which never really recovered). It is likely that if I had been able to physically handle another full round of chemo for my third round in June (as opposed to the lesser dose received) my blast count would currently be at an acceptable level for the transplant. It was confirmed that the decision to do a "lesser" round in June was the best for me, as chemo can be deadly if the body isn't strong enough to handle it.

So where do we go from here? Well, there is still a lot up in the air, unfortunately, but this is because the doctors want to fully know what we're dealing with before making any big decisions. I completely respect and appreciate this approach. I was also cautioned that the next few weeks could go in a lot of directions based on so many factors - test results, blood counts, my physical state, etc.

The current plan being proposed is that I will receive 10 days of infusion chemo simultaneously with the same pill form of chemo I've previously taken. The infusion chemo will be two different kinds - one for 5 days, the other for 10 - which are stronger than the liquid chemo I was given before and must be administered in the hospital setting. The pill could be given for 14 or 21 days, duration to be determined. Following this regimen, I will have another bone marrow biopsy to see how effective the chemo was in eliminating the blasts.

The hold up in determining if this is the best plan is that the genetic results of Tuesday's biopsy won't be available until tomorrow. These genetics are the disease's genetics, not my own. My disease hasn't shown many signs of mutating yet, which means it hasn't changed enough to show the doctors what exactly they need to target with the chemo. (Lack of mutation also means the disease is resisting chemotherapy on some level.) On a related note, my disease has shown chromosomal changes, which means it is disrupting genetic codes which regulate blood production, increasing cancer production, and again, resisting treatment. If mutations are detected, then the prescribed plan of action might change to be a more calibrated attack. Again, I appreciate that all considerations are being made before the chemo begins.

I know this sounds like a gloomy situation, but it is important to note that when I was diagnosed and had my first bone marrow biopsy, the blasts were at 85%. I believe the first round of chemo dropped them to around 25%. My disease history points to a very high chance this next, stronger round of chemo can eradicate the disease to a very low to non-existent state. Let's pray it does!

Despite my own setbacks, Ed has been instructed to continue the stem cell donation process as planned. His donated cells will be frozen and will be ready as soon as I need them, which could be around another month in the future if the chemo does what it should. Yes, this also means prolonging my stay in the hospital, but I feel I am in the very best place possible for my situation. There are experts on my side, and I haven't met anyone here yet who doesn't want the absolute best outcome for me. (The hospital food is also much better than I expected!)

I have now been switched back to being an "oncology" patient, which means the leukemia/hematology team of doctors (rather than the stem cell transplant team) are now in charge of my care. I have also been told I can remain here in my "penthouse" on the stem cell transplant floor even though I should technically go back to the 15th floor (if you haven't read yesterday's update, then this might not make sense to you!).

My parents were out for breakfast when I received an initial visit from the leukemia oncologists this morning. As I shared and processed their information with my parents, the three of us thought of several questions we had. We made a request around 11:00 am to have a leukemia team member return to my room, and then we waited until after 5 pm when a doctor did make her way back. While the doctor did a wonderful job of explaining everything we asked of her, her visit followed a long afternoon, punctuated by short, initial visits from other support staff members, vitals checks, water refills, and naps! As a result, my dad has decided to stay overnight and drive home tomorrow.

Current prayer requests:

• Pray the genetic testing shows something specific for which the chemo can target.

• Pray the genetic testing gets back in time for the chemo to begin tomorrow (Friday).

• Pray the chemo will destroy the final bits of the remaining leukemia.

• Pray the side effects of the chemo are minimal.

• Pray that Ed's donor process goes as planned and the stem cell harvest is a success.

• Pray that the stem cell transplant can happen eventually and won't be further delayed.

• Pray for strength and peace for all of us as this unexpected journey continues.

Thank you for your love, support, and prayers...and keep them coming!