Doctor a Day

Tony had a doctor's appointment every day this week. On Monday we went down for blood tests and it came back that his platelets were below safe limits (9). But the office that is closer to us doesn't do same day transfusions, so we had to make the journey back up to home (with me gripping the wheel tightly. It's scary to drive at high freeway speeds with someone with low platelets. Any injury would be very serious for him while he has low platelets and they were very, very low). 

The next day we went down again for a platelet transfusion. It went well, and he didn't have any allergic reactions to the new platelets. Wednesday he had another blood draw. They gave him a special shot last week that encourages his body to make more white blood cells, and on Wednesday his white counts had swung up from too low, to above average. His red count was still going down, but his platelets were up to 21. Thursday we had to get up at 6 a.m. to drive down to the SLC office. They did a blood draw and then we met with the hematologist. He is happy with how well Tony has responded to this last round of treatment. His platelets were at 20, so they seem to be holding steady now. His white counts were even higher than above average, which was encouraging because Jack also developed a fever Thursday afternoon. So we are grateful Tony is out of the illness danger zone now that Jack is sick. 

Today we went back down for another blood draw. His red counts are still going down, his platelets are  at a stand still and his white counts are STILL going up. So it's not likely he will be catching any illnesses anytime soon. Jack is also doing a lot better today, but we kept him home from school just in case. Since we're not expecting any more blood transfusions, the office moved him to just 2 appointments next week on Monday and Thursday for the next 2 weeks. 

Other updates: We were able to go to my sister's house for an Easter egg hunt (we had postponed it from last week due to bad weather). I was able to visit my friend Jennilyn and she cut and dyed my hair. (I love it. I feel more like me now). I was able to go with a lot of my family to Crystal Hot springs to swim and go down the water slides. I had a girls night with Lara. I also got to go with some of my family to the symphony/cirque for my mom's birthday. And we got to see Tony's sister Nicole. 

White cells down for the count

 Tony has been able to be home since Monday. We go every other day down to Farmington to get his blood tested. Yesterday's results showed that his counts are all coming down. His white counts are the only ones in the danger zone at the moment. Right now, that mostly just means that we had a very low key Easter Saturday. And we will need to be very careful about germs for the next couple weeks. When his platelets or red blood counts get into the Danger zone, he'll have to start getting blood transfusions when we go down to Farmington. Tony has an appointment next week with his oncologist at Huntsman as well. We are hoping to hear back about a few of the tests they've been running on his DNA. 

On Wednesday night, we got a surprise visit from the Easter bunny. Our ward primary here did a great service and hid eggs and toys all over the front yard. We got the boys out of bed, and they threw on some jackets and collected eggs. It was such a wonderfully sweet thing for the primary to do for the boys. We're so grateful. 

Our pods finally got delivered on Thursday. Jordan and my parents were able to come up and help unload most of it. And then Brad came up Friday night to help with the last of it. We've taken quite a few loads over to our storage unit and we're slowly getting through the rest of it. One of the pods had a leak, so a lot of our stuff got wet. Most of it was fabric and we were able to wash and dry it, but a few boxes of books were affected. The rest of the pod was full of tightly sealed totes, so we're grateful we decided to mostly go with totes instead of cardboard boxes, besides some of the books. 

The boys finished up their first full week of school. They did really well and are already looking forward to next week. We are trying to get used to our new routine, but Tony's appointments aren't at regular times, so every day is a new adventure. We are very grateful to be living with Tony's parents so they can help when Tony's appointments overlap with the kids getting out of school. Yesterday, my parents were able to take the boys after school while Tony and I went to an appointment, and they got to experience laser tag and mini golf. They're really enjoying having all of this family so close.

Today, we started off the day with a driving Easter scavenger hunt here in Tremonton. Tony's mom helped me figure out all the clues since I know very little about the town. They had 10 different destinations and only an hour to get to them all. We did manage to get to them all within the hour, but one of the stops was out of candy when we arrived. All of the stops had full sized candy bars. The boys thought it was very cool and it was a very germ free Easter fun for us.  We also dyed some eggs that Erin gave us. They really enjoyed it and we ended up filling up a full flat of dyed eggs. 

Home again, Home again

 This morning was Tony's last dose of chemo for this maintenance round. He was able to come home today and arrived around 3. He's feeling pretty nauseous and tired, but he's happy to be back in his own bed. His blood counts are still ok right now, but they will slowly start to drop and he should be feeling not great in the next few day. We are scheduled tomorrow, Wednesday and Friday to go down for blood draws. 

Today was also the kids first day of school. For Jack, this was his first day of public school (besides preschool at a high school preschool program). I had to wake up Cody because all 3 of the boys were up later than we meant them to be last night. Too much excitement for the next day. But Cody was not happy about being woken up and still wasn't really awake for this picture. Poor guy. He was awake and excited by the time we made it to the school though. All 3 of them really enjoyed the day. They all have great teachers and the kids were all really nice to them in class. The twins have separate teachers and are both in a.m. Kindergarten. It will be an adjustment for everyone but we are so grateful to be in such a great school.  

Another Round

 Friday morning we dropped the boys off at Tony's brother's house and headed into Huntsman. He had a blood draw and a covid test scheduled for 11. After they completed his tests, they told us they would let us know when a hospital room opened up. Since we have past experience with things like this, and knew they likely wouldn't call for a few hours, we left the hospital and drove about 10 minutes to the City Creek mall for lunch. We had a delicious lunch at the Blue Lemon, and then perused the mall. They didn't call us until almost 5 o'clock. Once Tony was officially checked in, it took them a bit to figure out he didn't have a port. Then, of course, the nurses staff switches out at 7. So he didn't get a picc line put in until around 8. They do the procedure beside and the nurses were very nice. He said the only thing that bothered him was when they put the lidocaine in before the procedure. 

Shortly after that they were able to procure a menu for him. This hospital has some really great food options for him that he's pretty excited about. The phones stay open until 9 for food, so he ordered some beef teriyaki. There was a bit of a miscommunication when the teriyaki came without rice, but he called down and they quickly sent some up for him. 

He's really enjoyed having the blanket his sister Nicole made for him to keep his shoulders warm in these hospital robes. 

They started his chemo around 10 p.m. Friday night. It's high dose Cytarabine. It takes about 3 hours to go into him and he receives it every 12 hours, for 6 times total. So his last dose should be Monday morning. 

Monday afternoon he should be able to come back home. Then we'll be down at the hospital every other day to do blood draws and transfusions. He should start feeling the worst of the effects of this round of chemo next weekend. So it's likely not going to be his favorite Easter. But we went shopping together for the boys a few days ago while he was still feeling well. 

Before we found out that his chemo was going to start Friday, we had actually bought tickets with my brother to go to Lagoon Saturday. So yesterday, his Mom came down and spent the day with him at the hospital while the boys and I were at Lagoon. Cody just hit 48 inches recently (with his tall basketball shoes on). So he was ecstatic to ride the big rides and has a new love for any ride that goes upside down. We also were there with my friends Shay and Lindsay. I didn't get a picture of Lindsay but she had Kevin for a lot of the day with some of her friends on the Kiddie rides. Kevin only lasted half the day and then Erin picked him up so he could rest. Chelsea's cousin works at the face painting booth so she turned Jack in Yoshi, and gave Cody a crown. We didn't make it onto the Ferris wheel at National Harbor so we had promised the boys the Ferris Wheel at Lagoon. The only problem was it was insanely cold at the top of that Ferris Wheel yesterday. Both Jack and Cody (and me) decided that Cannibal is the best ride at Lagoon and we were able to ride it twice, once in the front row and once in the back. 

Tony's been feeling mostly ok besides some nausea with this chemo. He's mostly eating light foods to combat the nausea. He definitely has less of an appetite today than he did on Friday. He slept better last night than he did the night before, and he's happy to be able to come home tomorrow and sleep on his nice mattress. The nurse said his counts are likely to drop 7 days after day one of chemo, and then come back up between day 16 and 20. We have a Florida trip scheduled 30 days after day 1 of chemo, and we'll get back 2 days before his next round starts. So we're hoping all goes well so he can swim with dolphins at Discovery Cove and go on our Disney cruise before his transplant. 

 

For Sale

 Our house is officially up for sale. So if you've ever wanted to see all the work we've been doing on the yard, our realtor got some great photos with a drone. We are very sad to say goodbye to our Maryland homestead. It was such a perfect place for our family and we truly thought we'd be there forever. But sometimes life has other plans. 

https://www.zillow.com/homedetails/3240-Woodcox-Rd-Indian-Head-MD-20640/36737092_zpid/?utm_source=email&utm_medium=email&utm_campaign=emo-propertyalertnew&rtoken=e4a6909b-d59c-461e-942a-b9cadbd3947f~X1-ZUxnxkk7o4asy1_2rqd8&utm_term=urn:msg:20220407052004594c5a4af8b5f101&utm_content=image

Upcoming plans

Tony and I went down to Huntsman today for another round of tests and meeting team members. He started with a regular blood draw, and then we met with his Hematologist. They have him scheduled to do his first maintenance chemo starting this Friday. He will be in the hospital for 3 days, and then will be able to come home. But will need to come back down every other day for blood draws and transfusions as needed. 

After meeting with his Hematologist, we met with the geneticist. While looking at the genes in his blood they found a possible concerning gene that could indicate that he is predispositioned to have Leukemia. So she scheduled a skin biopsy to check the specific genetics without involving his leukemic contaminated blood. If the results come back that he has this specific gene, they will have to test his brothers for it too. If they have that gene, then they are no longer viable bone marrow donor options. 

The skin biopsy was certainly less painful than his bone marrow biopsies. I snapped this picture right before they started. It was a pretty easy process, and he didn't feel much of anything besides when they put the lidocaine at the incision spot. They took the biopsy from his upper arm. It should take about 4 weeks before we'll have the results of the biopsy. They actually take the skin and grow it in a lab for 1-2 weeks, then send it off to test for 150 or so different genes.

Many Changes

The last week was a very, very busy one. Tony, the kids, John Lee and Tammy all flew out on Monday on a nonstop flight to Utah. They had 12 checked bags with them.

While dropping them off, I also picked up Shay and Karin. Their arrival time was perfect in more than one way. It was so great to be able to pick them up at the same time I was dropping off Tony. But I also really needed their joy and good humor to lift my spirits after some really hard weeks. After picking up dinner at M.A.S.H, we went to the house and they helped me pack the van and the car and get everything ready for our deep clean on Tuesday. Then I drove up to Dulles to pick up my little brother, Jordan. 

Before he left, John Lee helped FULLY load the two pods we got. We absolutely couldn't have done it without him. And we'll likely have to be careful opening the doors when they arrive. They picked them up on Tuesday. We also appreciate all of the help Tony's mom provided with packing, watching kids, doing dishes, and keeping the house in order through all of our craziness.

On Tuesday I was absolutely overwhelmed by the amount of help I received. Over twenty people came to help clean throughout the day, and we had three different friends with trucks that did thrift store runs and dump runs. Our wonderful realtor stopped by to do a few last minute things as well. Shay and Karin were able to head out to Karin's uncle's house with the car. They will be driving it back to Utah for us. The house was spotless and the carpets were shampooed when we went to sleep Tuesday night. It was a very successful day, full of very painful goodbyes. We have such wonderful friends that we are going to miss so much. We also had to say goodbye to our neighbor Jamie. She's been such a huge part of our lives and we're so sad we won't be neighbors anymore. We have truly been lifted up during this life challenge by so many wonderful people and I could never accurately put into words how much we appreciate each and every one of you. 

Jordan and I got up at 4 a.m. Wednesday morning and were out the door by 4:30. We had a 17 hour drive ahead of us and wanted to make sure we reached our destination at a decent hour. Tony had his appointment with his oncology team at Huntsman Cancer Center on Wednesday. His mom went with him to the appointment and I was able to join via phone while Jordan drove. They have an incredible focus on the whole patient, including having a physical therapist specifically assigned to each patient so they can ensure their body gets back to pre-transplant strength. Unfortunately we learned that Tony will need to undergo another bone marrow transplant. Tony was very sad about this, but is doing his best to stay positive. During this appointment, they discussed how in the last 10 years, they have discovered that using a sibling, even if their HLA typings are only a half match, is usually more successful that using a unrelated full match. So right now, the plan is to move forward with using Tony's brother Brad as a bone marrow donor for the transplant. But they both have done a few tests that are still pending results before we can officially move forward. Jordan and I lucked out in Springfield, Illinois, and stumbled upon a place that sold sushi tacos. We also made it to our destination in Missouri Wednesday night ahead of schedule, around 8:30 P.M. just as it started to snow. 

Thursday morning Jordan and I were out the door by 7 a.m. in Missouri. We got Burger King for breakfast which was surprisingly good, and headed East. Another 17 hour drive would get us to Utah. Our second day felt longer than our first, but again, we made it ahead of schedule. I dropped him off at his house in Ogden, and then made it to Tremonton by 10:30 p.m. Jordan was a perfect road trip companion, and we had a great time on our cross country drive. But it was so nice to be back with Tony and the boys. 

Friday, we had a small miracle occur. We needed to get a storage unit for some of our things. We really wanted a storage unit at the storage place as short walk from the house. We've been asking about it for the last week or so and always got the response that nothing was available. We called Friday and they set us up at a storage place that's about a mile away. Just as we were getting set up to head over there, we got a phone call that a unit had just barely opened up at the storage place down the street. She let us know that it is so extremely rare for a unit to open up, so God is definitely looking out for us. We were able to go down to see John Lee perform with his barbershop quartet, and then sleep over at John Lee's house. 

Saturday, we went to a baseball fundraiser for my cousin Jackson, then went shopping for a purple mattress with my cousin Ali, her husband Mike and my Aunt Michelle. Ali works in marketing for the purple store and got us an amazing deal on a full set up. We are hoping this will really help Tony as he heals from his treatments. Michelle got us the pillows and also got Tony and I these extremely comfortable loungewear outfits. So we have officially reached maximum comfort level. After we had lunch with them, we headed to a matinee showing of Drowsy Chaperone to see Erin. She was absolutely wonderful in it and we really enjoyed having the opportunity to see the show. 

Tony has another few appointments at Huntsman tomorrow. We're hoping to get a clearer schedule at that point so we know when all of his coming treatments will happen. The boys are going to spend the day with their cousins that are on spring break this week. 

We have really enjoyed being so close to family. The boys have loved spending time with cousins. But we are all missing our friends on the East Coast as well. Our house in Maryland is going to be listed this week. Our wonderful realtor is putting together drone footage of the property to show all of the things we loved about living there. 

Now that we're a little more settled, I will be posting here more often again. I am hoping to put together a post tomorrow after Tony's appointment.