Well, I’m sitting in Macon at the transfusion center and thought I’d post an update. While I miss the crew in Milledgeville, and I seriously hate the drive, the Macon team has been most hospitable and the facility is amazing. Hopefully, no one who reads this will ever need their services, but if you do, you’ll be well taken care of. There’s not really much to update health wise. We are still working with home healthcare as well as physical and occupational therapy. I can tell I’m getting stronger, but it’s still a long way to go. The goal is for me to be able to walk around the house without a walker. Both my strength and balance need to improve before that happens. We are slowly adapting to our new normal with my current abilities. Nikki has really been great at helping me with things I can’t handle right now, from fixing my medications and meals to helping me navigate around the house with my wheels. One thing I’m very grateful for is how many friends have reached out to me over the past few weeks. It’s been a blessing to hear from and be able to visit with so many I’ve been close to over the years. Last Saturday, some friends from my college days came and spent the afternoon. Many memories were shared and lots of laughs were had by all. I would also like to acknowledge everyone who came out on Sunday. Some friends organized a prayer meeting in my backyard so I could see everyone from my back deck, but still maintain a safe distance. There were at least five churches represented and i was truly humbled by the turnout. Y’all sure know how to make a guy feel loved. Thank you to everyone who has brought food since we’ve been home as well. We have certainly been well fed over the past few weeks, and it takes so much pressure off of Nikki.
It has been a whirlwind the last couple of weeks. Working on getting all the pieces in place. Home health has been great with nurses checking in as well as PT/OT. Daniel’s strength and balance are slowing improving. He had a couple of rough days over the weekend, but overall he is doing well. This week the place Daniel normally gets transfusions wasn’t an open due to COVID. The nurses were needed elsewhere so ambulatory care was closed for now. This meant coordinating transfusions in Macon. Next week the nurse will be able to draw labs from his port at home and then he will do a telehealth doctors visit and then go for transfusion. This will decrease his exposure as well has give him more time at home.Thank you for everyone that reached out to us. We appreciate you all! As I sit here reflecting on ways others have reached out to provide support I am overwhelmed by how abundantly blessed we are.
There are some updates you never think you’re going to have to write, and this is one of them. I went to Atlanta with the intention of a bone marrow transplant that would put me in total remission. But that was not to be my journey. My MDS has progressed to acute myeloid leukemia. It has not responded to multiple rounds of chemotherapy. In fact, the number of cancer cells actually increased after the last round. This unfortunately means a transplant is no longer an option and would not be successful. We have discussed all of our options and any further treatment or clinical trials would cause more harm than good. So, I have decided to return home to spend as long as I may have building memories with my family, with my friends, and with my cats. The doctors say I likely have three to six months, but I know my God is a lot bigger than any medical prognosis. Until it is His time for me, nothing can harm me. And when the time comes, I will be in the arms of the Savior who spoke the world into existence. And that is enough for me to know.
We are still waiting for the results of the genetic testing for the blast cells; not sure when we will have that information. But, there were a couple of notable accomplishments today.
First, they took me off diet restrictions that had been in place due to my gallbladder. My appetite is still low, but I can eat solid foods after being on a liquid diet for the past few weeks. My first meal back? Chicken Tortilla soup.
I was also able to walk outside my room with physical therapy for the first time since I was in ICU. That’s almost three weeks. I didn’t make it far, but it was a lot farther than I did yesterday.
For now, we continue to wait. Wait for the genetic results to come back. Wait as I continue to rebuild the strength I took for granted before I was admitted. And wait to see how God will bless us next.
Bone marrow results are back. There were 5% blast cells. They really prefer for that number to be less than 5. The results aren’t conclusive on if cancer is present. They are doing genetic testing in the sample to see if the mutation is present.If there is no cancer they will wait two weeks and do another biopsy. If cancer is still present there isn’t a clear path forward. The doctor said they have already thrown so much at his body they want to be careful.So for now we wait on those results. In the meantime Daniel is not strong enough to be released or to have transplant. So his focus will be on building up his strength. ICU was really rough on him but he is making gains every day.Daniel’s blood counts are showing some improvement. But they definitely want to see those numbers much higher before he can be released to the apartment for outpatient treatment.
Daniel returned to the Bone Marrow Transplant Unit late yesterday! They also did a bone marrow biopsy so those results should be back in a few days.The pneumonia he had is some better from previous X-Rays based on what the nurse shared with me. ICU is a completely different world, but everyone was fantastic! There was an ICU nurse that did a rotation in BMT as couple of weeks ago that took care of Daniel. When he saw me in ICU he followed me so he could find out what was going on with Daniel and then stop in to see him. I know Daniel is glad to be back in BMT. Hopefully he will be able to slowly start back with PT and he can get settled into the new room and start having a routine again. Thank you for all the prayers!
I got to video chat with Daniel. The surgeon said he shouldn’t need any surgery as it looks like the gallstone passed on it’s own. They think that is what caused some of the increases in his blood work.Right now the plan is to keep him in ICU today and wean him off the oxygen and move him back to BMT tomorrow! Praise the Lord!
Daniel is in ICU so they can monitor is oxygen levels more closely. His gallbladder is inflamed and may have a stone so they are working on possible solutions. He has had a few rough days but is resting. God is in control!
Long Version (It started as a brief update but yeah…):
Overnight Daniel’s liver enzymes jumped. His nausea has returned causing him to get sick. He mentioned he thought he pulled a muscle in his stomach. They ran some tests and his gallbladder is inflamed and there may be a stone. While we were waiting for them to run the tests, Daniel’s breathing become very labored and he was sweating profusely. The nurse called in the mid-level and after evaluation it was decided that he should be moved to Respiratory ICU. We say it all the time but we are so thankful that the staff at Northside is so proactive! They know what to watch for and find issues before they become big problems. When the respiratory doctor from ICU came in he thought Daniel was going to need to go on a ventilator for a couple of days. We know a ventilator is not as scary as it is made out to be on TV and the goal would be to let his body rest and recover during that time. This was not anything Daniel and I had ever considered as part of this journey, so it was a bit shocking. While we waited for transport we had time to pray together and he wanted to hear “Peace Speaker”.God moved in big ways today! They took Daniel to ICU and said they would get me once he was settled. By the time I got to ICU, they said his oxygen levels in his blood were in acceptable ranges and he would not have to go on a ventilator. Answered prayers! Please continue praying that his levels will improve and he can remain off the ventilator.As I waited in the room for them to come get me a few people stopped by to check in to see if I needed anything. There were prayers, words of encouragement, and offers of hugs. Everyone always talks about how positive and kind Daniel is even with everything he is facing. Right now, the ICU doctor is working with the BMT doctors to come up with a plan for treating the gallbladder since his platelets are so low. They will continue to monitor the oxygen and his heart. He rested most of the afternoon. Once we were in ICU, someone came to check in to see if we had the support system we needed. The conversation really reminded me of how big we are blessed. As Daniel was talking, he said that through it all he is grateful. He was exhausted and could barely keep his eyes open, but he wanted to praise the Lord. I am thankful that the Lord is by our side through all of this. Thank you all for praying and checking in on us!
Saturday we found it he was starting to get pneumonia again so they began antibiotics and oxygen.Last night he started with a nosebleed that has not stopped. It’s not gushing but it’s a steady bleed. The BMT doctors have treated it with their normal processes but nothing has fully stopped it. They have asked ENT to consult as they have additional methods. In the meantime they will do platelets twice a day.This morning we found out the last echocardiogram showed that his heart is pumping at a reduced level. We aren’t sure if this is because of fluid from the pneumonia or if something else is going on. Cardiologist said this can be because of some cancer medications and increased heart rate. Which he has had both. It can also cause the heart to beat irregularly which did occur once on Thursday. They will begin a heart medication and continue monitoring.We are very thankful that they keep such a close eye on everything and catch things early. Prayers are appreciated!
Good news from the doctor today! The bone marrow biopsy showed that the blast cells are stable. They were able to discontinue the chemo pill. Hopefully Daniel’s blood counts will start to recover without the chemo suppression.The infection is gone from the port so they can now use it so they were able to remove the extra IVs. More than likely they will still want to get him a new port, one that allows multiple points of access. But it’s not a pressing issue now. Right now the docs will monitor his levels. Once his platelets and white cells rebound they want to release him to come to the apartment with me. Daniel will be focusing on building strength and endurance. No timeline for transplant but the doctor said this was the first step. So moving in the right direction! Thank you for all the support and prayers!