I am going to start this update off with honesty and transparency on my emotional and mental state. I feel like I have no energy to give, and my spirits have personally been beaten down in so many ways the past couple of days. I feel like I have had to deal with hard hit after hard hit. I miss our kids and I miss life before this diagnosis. Everything has changed, and today confirmed for me once again that even when we go back to our "normal" after this, nothing will be the same. While the mental load I carry for Jared, the kids, and for myself is feeling very heavy today, I am not going to break. I cannot begin to tell you how many tears I have shed this afternoon and evening alone. 

With that being said, Jared is still doing well, so let's get into this week's update on him. 

Thursday, Day +22, was an uneventful day. Jared had the day off and had no appointments, so we spent it at home together. Jared played video games, while I binge watched Grey's Anatomy, and then we FaceTimed the kids before bed. Easy day. 

Friday, Day +23, was another day with no appointments. Jared made his first solo trip out of the house to go through the Starbucks Drive-Thru and got himself a well-deserved coffee. Because Jared was feeling so good, and the kids all seemed to be healthy, we decided to pick all 4 kids up after school and take them to the park for a little while. This was approved by Jared's team, we took all of the precautions we were instructed to take, and Jared and I were masked up the majority of the time. It was the first time that all 6 of us were alone as a family in 4 and a half weeks. It was an amazing evening and much needed for all of us. 

Saturday, Day + 24, was another appointment less day. We ran a couple of errands, did some chores at home, and then saw our 2 youngest kids for a few minutes in the evening. Jared's sister and her family participated in a Walk for Cancer on this day, and Uncle Jared was put on the back of our niece's shirts. 

Sunday, Day +25, we FaceTimed into Church as usual, and then I asked Jared to get everything set up so I could mow the yard. This was something I had never done in the 7 and a half years we have lived in this house. Even though it wasn't perfect, I was in a lot of pain afterwards, and I complained a lot when it was done; I did my best and Jared supported me the whole time. Due to the mold, fungus, and dust particles that get blown around in the air, Jared is not allowed to do any yard work to protect his lung and because of the lack of an immune system. Unfortunately, this day our baby boy had to be brought to Urgent Care because he was not feeling well and was treated for Croup. 

Monday, Day +26, Jared had a lab appointment to draw blood for his appointment later in the week. After that, we lounged around at home and kept each other company. Another easier day.

Tuesday, Day +27, Jared had another day off from appointments and spent most of the day at home. We took a drive and got to visit with our 2 middle girls after they got home from school. Sadly, our son had to go to the ER because his Croup did not seem to be getting better. Our sweet boy ended up getting a second dose of steroids and was sent home sounding better and with normal vital signs. 

Wednesday, Day +28, Jared had an appointment that we were very anxious for. It was his 28 Day Anniversary, and an appointment that we anticipated that could possibly come with some good news about his lab results from Monday, restrictions being lifted, decreases in the amount of medication Jared would have to take, and the approval for the kids to come home. Unfortunately, none of the things we were hoping for happened. Jared's White Blood Cell and Absolute Neutrophil counts dropped below the normal parameters. His immune system was weaker this week than the week before. The doctor explained that this happens sometimes during this part of the process because his body has been working so hard internally to recreate and rebuild his bone marrow functionality, blood, and immune system, that it just decides it needs to take a "break" and slows down on doing its job. Because of this, it was recommended by the doctor that none of Jared's restrictions be lifted, that the kids wait to come home until everybody is healthy, and that Jared go back in next week for another lab appointment to see if his White Blood Cells & Neutrophil counts recover and hold steady in the normal parameters on their own. This also meant that we would not be able to attend church in person on Mother's Day as a family, something I was so looking forward to. All of this news felt like a punch in the gut to both of us. This is a minor setback, but a setback none the less. One positive that came from this appointment was the okay to get Jared back to his MM Specialist to figure out what Jared's Maintenance Phase of his treatment plan would look like and to get it started. 

Today, Day +29, Jared did not have any appointments and has felt really good all day. We did some chores around the house and scheduled the appointment with his MM Specialist. I received a few pieces of disheartening personal news, and Jared stepped up for me in the most supportive way while I started dealing with the emotions and anxiety that the last few days have brought not only me, but our family as a whole. Most days, I try to be the positive and strong one in the house to keep Jared and the kids going, but today the roles were reversed, and he has had to be my flotation device, alongside the Lord. The kids attended an out-of-town funeral with my parents this morning for a very loved family member that passed away last week. 

Through it all, and even in our weakest days, the Lord has been with us. We continue to trust that everything happening is His plan, even when it is hard to see the positive or good. Jared is feeling better, we have a strong support system, we have a great medical team & modern medicine, we have a loving family and Church family, we have a Powerful Lord, and we have each other.

With Love, 

Jared, Sarah, & The Family ❤️