December 3, 2010
As Bonnie rests in the quietness of the room with the IV pumps whining, clicking and pumping away, I thought I provide an update on Bonnie as it has been a couple of days. There has been much change thus far in her physical condition. She still has the horrendous mouth sores from the Graft vs. Host Disease, swelling in the cheeks from the sores, skin GVHD, no white blood cells to speak of, and other key blood components that decline and then boosted by infusions.
To counter the pain we are trying to manage and tweak dosages of dilaudid so it doesn’t cause nausea on top of everything else. Yesterday the doctors prescribed a Patient Controlled Anesthetic (PAC) device so Bonnie can push a button for pain med as needed, up to four times each hour. Even with the minimal amount of meds, it is still creating nausea, so along with the paid med she reluctantly takes Ativan as an anti-nausea med. Both the pain med and Ativan combined cause Bonnie to be groggy and sleep a lot, which is a frustration for her, but the lesser of two evils with the intense pain she is experiencing.
One of the sores on the inside of her cheek is hitting the nerve that runs into the molars and up into her ear, so not only is the pain local, it also travels through the nerve that runs along the jaw and into the ear. Today the doctors are starting a two day plan to see if they can alleviate some of the pain and settle down the GVHD mouth sores, by using a low dose steroid, Decadron. Putting Bonnie back on the normal steroid she has been on since the transplant (Medrol) would stir up leukemic activity, and could possibly reverse the positive effects the radiation had on the mass in her breast. So, they are giving her four doses total of Decadron between today and tomorrow.
The hope is that the Decadron will be like a small bomb attacking the GVHD in her mouth neutralizing it for a couple of days until a heavier dose of her immune suppressant medication can build up in her system to counter the use of the white blood cells that are traveling to these sores wreaking havoc in her mouth. The thought is that the few WBCs she has are all going naturally to attack this area with the GVHD, which makes matters worse. If the low dose steroid can slap down the GVHD, the WBCs won’t be used up so quickly, allowing her counts to rise.
This is the short term remedy and no guarantee it will be successful, but that is the plan for now. Long term there is still the issue of why the leukemia came back with textbook GVHD. Questions that remain and can’t be answered at this point include, did the graft of the donor stem cells fail (transplant rejection) after a year or is there a viral infection that has yet to be detected. All blood tests have come back negative. GVHD can cause WBCs to decline, but Karmanos also feels that the amount of radiation needed for the treatment of the mass may have contributed to the reduction as well. Has Karmanos seen stem cell rejection a year later? Yes, but rarer. At this point is that there assessment? No.
So, we wait. It’s a trial and error at this point or maybe better referred to as trial and elimination. There isn’t a “step by step” clinical study that says “here’s how you address this issue.” It’s looking at every possibility and eliminating and narrowing down. We know we are in the right place and feel confident that Bonnie is getting the best care possible.
In some respects, the bone marrow transplant in 2009 was easier, as there were benchmarks or milestones that a loose schedule adhered to. In this case, it is all about the unknown. So we have to put the “unknown” in God’s hands and rest in the fact that he knows the outcome. He knows what is going to happen the next hour, the next day, the next week and beyond.
Ours and your prayers ARE being answered. Some may not be the answer WE want or desire because WE don’t possess God’s wisdom to fully see the picture from His vantage point in infinite dimensions compared to how he created us in finite dimensions. So how are the prayers being answered? Our faith and trust in Christ has not wavered throughout this trial. It has been strengthened. The peace that God has poured out upon us has been abundant and overwhelming which provides us the nourishment for endurance. Our patience in “waiting on the Lord” has not wavered even with the day to day waiting and wondering what is next for Bonnie.
“….for He views the ends of the earth and sees everything under the heavens.” Job 28:23-24
Thank you for your continued prayers.
Steve & Bonnie