One Day at a Time...

It is Saturday afternoon and we are still in the PICU with Ammon, and will likely be here for some time. On Friday Ammon remained stable, but again it was primarily due to all the medications and procedures the doctors are performing on him, and not so much because his body is performing as it should. His acute pancreatitis has not resolved itself, and his stomach has actually continued to swell. Ammon was still generally in a lethargic or sleepy state the whole time, probably partially caused by the medications, but moreso by all the trauma his body is experiencing. His stomach, particularly on the left side where his pancreas is at, is painfully sensitive to even the slightest touch. I know the doctors are doing everything they can in the most professional and caring manner, but it breaks my heart that every professional that enters the room feels it necessary to press on his stomach. I know the oncologists, PICU doctors, surgery doctors, respiratory doctors, and others are all looking for slightly different things, but the only time that Ammon really comes out of his sleep or lethargy is when they press on his stomach and gets that shocking jolt of pain. Ammon has a dedicated one-on-one nurse caring for him 24 hours a day, and I suggested to one of Ammon’s stellar nurses, Jessica, that they simply put a sign up that says “Dr. Smith was in here 1 hour ago and pressed on Ammon’s stomach confirming that yes it is still incredibly painful, and yes the swelling has not decreased.” If it wasn’t so heartbreaking it would be almost comical. I can’t imagine if a patient had a broken leg that every time the doctor came in they would bend the patient’s leg again, wait for the shout out of pain, and then respond, “Yup, still looks like it’s broken, another doctor will be back in a half hour to check again.” My concern did get through and when I came in on Saturday to see Ammon and Summer, the doctor’s and nurses were much more sensitive of this. Yet, they still need to perform their jobs, because you never know when one doctor will discover something that another has missed.

We’ve learned that Ammon has developed diabetes through this process. It might be temporary or it might be permanent, this is another wait and see. If it is permanent, as long as we can have Ammon we can deal with this. Ammon also had another bone marrow aspirate or biopsy on Friday. When the oncologists came to visit him on Friday they essentially indicated how critically important that particular day was in Ammon’s cancer treatment. They had to perform the bone marrow procedures so they would know how to move forward with the treatment roadmap during the remainder of the induction phase and through the entire three year treatment process. Apparently, depending on the results it could mean lengthening certain phases of his roadmap, increasing the degrees of chemo treatments, etc. The three years will remain the same, but the induction phase might move from one month to two months, the treatments in those phases might become more extreme. We are still waiting on the results of the procedure. We are hoping for no blasts or less than 5% of blasts. His bone marrow biopsy from a week ago still showed 70% blasts, but this was also before his vincristine chemo he received for the first time on last Friday. In total Ammon has received three chemo treatments to date of different types.

Ammon had another CT scan performed specifically on his abdomen today and the results definitely show the pancreatitis, but also show possibilities of other complications. His colon possibly shows a type of disease called typhlitis, and they are concerned that the walls of the colon will deteriorate further and allow bacteria through and into the blood stream. With Ammon’s blood counts still at rock bottom they have increased his antibiotics to include three other medications. Further, the surgeons are going to take another look at Ammon again to determine if surgery is required. They will only do surgery if critically necessary, because surgery at this point on his body would be devastating. We are hopeful that these issues can be resolved through other means. Everyone has bacteria in their stomach that is actually critical to digesting food and getting nutrients out to the body, but in Ammon’s case this ‘good’ bacteria becomes like all other harmful diseases if it escapes his stomach. Ammon’s in an isolated room to prevent bacteria and disease from getting in, and we hope the new antibiotics are sufficient to prevent the stomach bacteria from getting out.



Depending on the results of everything above, and possibly in spite of it, the oncologists are planning on giving Ammon his next scheduled round of chemotherapy today or tomorrow. We know he needs it, we know there is not another exit strategy or even a beautiful rest area for a weary traveler on this chemo highway, but it is just so hard to see him so bad and know that the only choice is to add another stack of bricks on his already breaking back. The goal is to snap the back of this cancer, before it breaks him. I recently heard one adult cancer patient briefly describe the chemotherapy process this way, “You hit a point where you’re halfway through chemo, and you feel horrible and you don’t want to keep going…but there is no other way.” Everything else the doctors are doing will be for naught if Ammon can’t continue to receive his chemo treatments, but it is still so hard. Imagine traveling down a one lane dirt road and the road falls away behind you as you drive over it. You still have the choice to stop and let the road fall away beneath you and you with it, or you keep moving down that road, hoping that the destination makes the whole journey worth it. There’s really not much to the choice is there, you just keep going. It reminds me alot of certain ancestors stuck on the plains, in deep drifts of snow, and sub zero temperatures. Turning back was not an option, stopping was not an option, and moving forward was a very painful option, but really the only one left. You move forward, and pull through it together, only to discover angels pushing behind you.

There’s so many good people here in the PICU and at the hospital. There’s so many good people at home and in our neighborhood. There’s so many good people all over, praying and fasting for Ammon. You need to know these prayers are being heard and answered. Ammon would not have made it this far without the miracles and the prayers of all of you. We are grateful to you and to Heavenly Father for all the love and strength we receive from you. We can’t imagine doing this without each of you.

Tomorrow will hopefully bring better news. We’ll also share some more stories about the miracles and people that have touched Ammon and others. This is where we will be posting Ammon’s updates for now, so please feel free to share it with those that are concerned about Ammon’s journey and those that are praying for him.