Hope and Enduring to the End

In October 2008 General Conference, President Dieter F. Uchtdorf gave a talk titled "The Infinite Power of Hope". Hope in God, his Goodness, and His power refreshes us with courage during difficult challenges. There have been many a day in this difficult journey that I have been in despair. There have been days where we feel we simply cannot handle one more hurdle or watch Nick endure one more second of pain or misery. It is hope that carries us on. Hope that the doctors can find a way to effectively treat the fungus, hope that the chemo treatments for the Leukemia will be effective, hope that Nick will start getting some strength back and have more good days that sick days, hope that Nick will experience less pain, hope that he will stay positive and continue fighting. Most of all we hope Nick and our family can and will endure to the end.

"Hope is like the beam of sunlight rising up and above the horizon of our present circumstances It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in Heavenly Father" (President Uchtdorf, General Conference Oct. 2008)

There have definitely been days where hope has been distant and despair has reigned. We work daily to have hope and stay strong, especially for Nick. The reality is this is an emotionally and spiritually trying experience. We can't possibly expect to go through this process without experiencing some breakdowns as well as some feelings of loneliness, fear, anger and despair. I have found for me personally releasing those feelings is usually very therapeutic and allows me to pick myself up and be stronger the next day! I want and need to be strong for Nick. He needs us to build him up and help him stay positive.

Nick has been through a lot in the last 2 weeks. On Monday Oct. 10th he had a follow up visit at the Moran Eye Center with his Retinal Specialist. Due to the fungal infection being present in his left eye it needs to be monitored to make sure it doesn't start affecting his vision or the fungus get more prominent. Unfortunately, on that day it was determined that one of the fungus spots had gotten larger and the other smaller. The specialist determined that a shot in Nick's eye was needed. Nick did a great job and got the shot that day in the office with them just numbing his eye.

The remainder of the week of the 10th, Nick was on a week long break from chemo before starting his next phase of treatment. He was hoping to go to a couple movies and do some other fun things as his blood counts would be going up allowing him to not be so immune compromised. His blood counts were rebounding as expected but it is likely the increase good white blood cells which fight off infection that caused him to fever and be sick the entire week. Those good cells were likely trying to fight off the fungus infection which made Nick super tired and weak. He was sick the entire week.

Monday, Oct. 17th Nick got his port put in. We are grateful to have the port finally in and hope everything continues to go well with it.  It ended up being a painfully long day with us leaving our home at 7:00 am and returning home at midnight. Besides the port, he got a lumbar puncture, two bags of blood and chemo treatments.

Tuesday and Wednesday Nick was pretty droopy. We figured it was from the anesthesia and the surgery itself and he seemed to be feeling a bit better by Wednesday evening. We enjoyed watching a movie as a family before turning in for the night. Thursday morning after starting to run a fever he told me he felt like garbage and wanted to go to clinic. We called in and headed up to clinic to see if they could help him feel better. After a few hours there and some discussion with Nick and his doctor it was decided to try a feeding tube. We figured that would get him some additional nutrition as well as take the pressure off of him to eat when he wasn't feeling good. The hope was that by boosting his nutrition it will boost his energy.  They admitted him to the hospital to start the feeding tube feedings slowly and build them up a bit and see if that seemed to help him overall.

Friday Oct. 21st Nick had a scheduled eye appointment at Moran again. This time his sight was significantly worse and the fungus had progressed. It was determined by his doctor surgery needed to be done that day. It was scheduled for 5 that afternoon. The surgery was an hour long and they removed some fluid and injected a couple of anti fungal medications as well as some antibiotics. The hope is that the fluid they removed will yield some information on the fungus species so it can better be treated. The shots they gave should help treat the fungus in the eye as well and improve the vision issue. We are hopeful this will work as now we are extremely concerned about the long term affects on his vision.

Saturday it was determined another CT scan to check the fungus in his spleen and liver was needed. Their appeared to be more fungus spots but that could have been from the inflammation from the white cells attacking them as well. The weekend was spent with doctors going back and forth about if they could biopsy some the of fungus. The Liver would provide a good chance but the couple of pieces in there are apparently quite small and thus hard to obtain in a biopsy. The spleen would be more of a major surgery and given his Leukemia diagnoses not realistic in regards to the  risk vs. yield. They also changed the fungus medicine in hopes of seeing an improvement in the infection.

All  morning  today we all waited to see what the radiologist who would do the biopsy thought of it. He recommended an ultrasound to view the size of the fungus in both the liver and the spleen and it was decided not to do the biopsy. Unfortunately while we were waiting for the final decision on this we ended up having to miss our lumbar puncture time so that got rescheduled for tomorrow. The plan is for Nick to come home tomorrow. We are glad to be getting him back home, it can be extra frustrating being at the hospital. Nicks energy is definitely up since the feeding tube got placed and we are hoping he will continue to get stronger. We are praying the fungus issue gets figured out. We are hopeful the samples from his eye will yield some answers to help the doctors better treat it. We hold on to hope every day and one of these days this is going to turn for the better. We have to believe that for Nick. We are so proud of him and can't believe everything he has been through. We doubt ourselves everyday and every decision we have to make for him.  We hope and pray we are doing our best for him.

Thanks to all of you that have let me vent to you. It is sometimes a great load lightener to let it out. We are so appreciative of everyones love and support and so very grateful for all the prayers for Nick and our family.