Recovery Day 42

6 weeks! It's been 6 weeks since surgery! Unfortunately, he's had a rougher few days. 

Thanksgiving was wonderful. His mom, sister, nephews, brother-in-love and his mom came for dinner and some fun after. Thursday didn't net his normal naps and rest time. But he wouldn't have traded anything to have that time with them. He loved it. 

Friday he was just a bit tired from the previous day. But all in all was good day resting. He tried one of Audrey's amazing pies that evening. That was not the best idea in hindsight. 

Saturday morning he struggled with the GI rebellion. After the girls left for the last playoff game, we did a training session on his colostomy bag for him to start learning how to do it. We went for a good long walk. And some friends came over to talk through some of the questions we have about his colostomy and practical issues of clothing and activity, etc. it was a great time with them with wonderful insight and guidance. 

Sunday he just generally felt off and last night we started to maybe realize why. But right now we are still kinda at a loss and trying to figure things out. Alan started feeling feverish. So we took his temp with our digital forehead thermometer that was used by most county offices during Covid. It registered 101.8 and so we decided to wait a little bit to see if a false reading. 30 min later around 9, it registered 102.8. Well since 101.5 is ER territory with no spleen, we got ready and headed out the door. The girls tackled the last few things that needed to be done to be ready for the week. We ran by Bobbie and Darren's on the way out the neighborhood and borrowed their oral thermometer. It registered 100.6 in the truck. We still decided to go to see what the ER's official thermometer showed or if he tested positive for flu or Covid. After about an hour in the wait room, he tested at 100.1 and was negative for flu and Covid. After another hour, he was down to 99.4, all with no Tylenol or Advil. So we decided to do nothing further and follow up with Dr. F, after much discussion about MDA and his specific circumstances with the ER nurse and doc.

We texted Dr. F during the night to inform him and he agreed to go home in light of the testing but did want his PA (Karen) to follow up today with us. We got home just before 1 am. Karen and I spoke this morning and went over it all and his temp norm or around 99 something. She and I thought that his temp regulation may be an issue because of the chemo still in his abdomen and the massive amount of weight he has lost. She was going to send an email to the whole team (Morris, You, Fournier, Padilla) to see if they wanted a blood check or anything else. She called back in less than 30 mins saying they do wanted blood. 

All day Alan has just felt off. Not bad just off. Ran him to get blood work around 2:15, picked up Audrey and then ran back to get him. Before we could even get home the results were coming in. Several levels were slightly high or low like normal. His red count and hemoglobin are still low like they have been ever since surgery. But his white count is high and a couple other levels were off. Soooo we were confused. 

Audrey and I ran the two cats to the vet appointment. Sadly that appointment was challenging. Humble has a bladder infection, which I was suspecting. Jack Jack has an infected tooth that will have to be removed. So both of them are on antibiotics for the next week!

While at the vet, Alan texted that Dr. F's office had called and he will want a virtual visit tomorrow. So we wait for that to pop up on Alan's MyChart. 

We've watched his temp all day. And up until 6, it stayed in his normal 99s. At 6, he was running 100.2. 7:30 was up to 100.7. And 8:30 was 101.1. At 9 he was able to take Tylenol again. Now it's at 100.6.

Please pray for the wisdom of our medical team. Pray for Alan's temp to stay well. Pray for whatever is going on with his blood to be resolved easily and not require a hospital stay. 

Recovery Day 35

Sorry we haven't updated since last week! Caregiver duties, Mom duties, Work duties - it just didn't happen. 

Last week was good. Progress is slow. We both just have to keep that in mind. Today is 5 weeks post op!

Friday, we met with Dr. Dude! Reminder, Dr. Morris has been Alan's oncologist since February 2017. He has walked this whole journey with us. He is like family at this point. I mentioned in the last post we were excited to see how excited he was for us!

He did not disappoint! Jocelyn, our PA, did not disappoint! We are all just overjoyed that the cancer was removed!

Majority of our time with Dr. Dude was spent talking about the clinical trial. That morning they took his blood for the CTDNA test. Dr. Dude took us through the next steps and what everything means. The CTDNA test stands for Circulating Tumor DNA test. They take his tumor that was removed and isolate the mutations within in. Then they see if his blood has those mutations in it. Because this is so specialized and new technology, the first time for this test takes a long time to get results. Any future results will be faster since the tumor analysis will only need to be done the first time. 

The current plan is 3 month scans and blood work. Dr. Fournier will be reviewing all scans because regular radiologists will see the way his insides look and assume he is eaten up with cancer! So grateful for the entire team approach to my special unicorn!

Our hope and prayer is that this blood test is negative - meaning there is no microscopic cancer present anywhere in his body! IF that's is the case, NED (no evidence of disease) is really, really real! Absolutely the best possible outcome from this surgery. If that's not the case and the test is positive, they will start developing the therapeutic vaccine. 

They will continue to test him every 3 months if he is negative for when it starts to come back. This test is sooo highly specialized that it can detect the presence of cancer 8 months before a tumor shows on a scan! Absolutely incredible! Love our God given technology! 

Today we met with Dr. Good Hair to look over his incision. He also looked at the drain site. He was super pleased! It was brief, but he went over that Alan still has restrictions of lifting for several more weeks. We will see him again in 6-8 weeks!

Next up was a different Wound nurse that before to look at his bed sore. She was pleased that it was a little better but didn't feel like it had made enough progress. We revised how to dress it to get it to heal better! It was a really good visit. 

Both days resulted in an Alan nap when we got home. Everyone is agreement that if he didn't have this dang bed sore, his progress would be even better! So we are praying this heals soon. 

So much to be thankful for this Thanksgiving! Praying each of you have a joyous Thanksgiving with your families!

Recovery Day 28

Big Sis Follow Up

Dr. You never fails to disappoint me! She couldn't even wait for the nurse to finish with Alan before she came in. The good news from the nurse part was that Alan has gained back 5 lbs! So he is only down 30 lbs now. 

Dr. You was very pleased with how his incision is healing! She removed the staples, which provided much relief. She took the time to look at his sore in his back end. She was pleased with the progress it is making. 

The rest of the visit was focused solely on the drain site that was still seeping fat necrosis! She found the pocket it was coming from and did a little work on it and then showed me how she wants me to dress it and work to get it all out so it can finally heal. She wants to see us again next Monday. 

Next follow up is Friday with Alan's oncologist, Dr. Dude! Looking forward to his joy over the cancer being removed! 

Recovery Day 24

Follow Up Visits Galore!

Today was post op appointments Day 1. Three more days of post op appointments between now and the 21st. And then more I'm sure after that!

The morning started with blood work at 8:30. Then it was off to the wound ostomy clinic. After two calls with them over the weekend and this week, they had moved up the appointment from next week to today. The good news is we discovered the cause of the pain he's been having! The bad news he does now have an open wound bed sore! Everyone is pretty sure this is from the 17 days in the hospital and the massive amount of time he was unable to move much. They taught me how to dress his wound. And now we have an additional follow up with them on the same day as his plastics post op. 

After that appointment, he had his post op with Dr. Fournier and his team. After meeting with the nurse and PA, his nutritionist met with us. Due to the burning his internal organs took and his bed sore, Alan has to focus on eating between 120-130 grams of protein. It's the only way his insides will heal. So while he has done well focusing on 5-6 small meals a day, now we will be upping his protein intake to at least 20 grams in each. 

Then Dr. Wise One came in. He is so pleased with how Alan is doing. He was surprised with Alan has a bed sore. He wonders if it isn't a bed sore but shingles. So I will keep a close eye on it. In the meantime we will dress it and handle it as a bed sore! So grateful for a fabulous nurse friend who walked me through the supplies I have and the two different ways to treat it. 

Tonight after he showered, I dressed his drain that is still leaking fat necrosis. Then I cleaned and put antibiotic ointment on his incision. Dr. Fournier was thrilled with how his incision has healed. He thinks they could come out next Monday or the following. Then I dealt with changing his colostomy bag and dressing the bed sore! All told from the "I'm ready to take a shower" comment to complete was an hour and a half long process. Just when we thought we were getting to a point where we might get faster at this process...

After 4 hours at MD Anderson's Med Center location, we headed back home. The morning was long and took a LOT out of him. 

In other news, the girls and The Woodlands High Band had two competitions from Saturday to Tuesday in San Antonio. They placed 2nd in the Bands of America Super Regional and 4th in the UIL 6A Marching Band State Championship. 

Sadly upon coming home, Audrey wasn't feeling well, along with many of the other band members. Wednesday, Audrey was diagnosed with strep. Today Rebekah came home and was diagnosed with the flu!

So now the pharmacy on my kitchen counter and the medical supply company on my bathroom counter have both expanded greatly. 

Prayer Needs:

• Girls to heal and not get each other's illness. 
• Alan not to get either of their illnesses. 
• Me to stay well and able to care for the three of them. 
• Girls to be able to get all their school work done. 
• Alan's bed sore to completely and quickly heal. 
• Exhaustion is definitely real - sleep for Alan and I both. 

Everyone is isolating from each other and masking when around Alan. Erie Covid vibes... but we are all trying to protect him. 

Thank you all!

- Mel

Recovery Day 17

First day home! It was a good day! We are settling in, and yet I am still overwhelmed. 

Alan slept in, while I did the carpool run for Audrey and ran to the office. Some checks needed signed, plus I was trying to pick up a functioning laptop. Sadly when I got my laptop back home, for the third time the same problem occurred. IT will work on it again tomorrow. 

The key today was to start establishing an at home routine. Today we got a good rhythm going on his small "meals."  Alan told some friends that he is eating little kid portion sizes.  In addition to that, we got his medication routine planned. It seems to have worked well today. There are a lot of meds and a lot to keep straight. So Excel to the rescue! 

For almost three weeks if it wasn't mission critical, it is been on the back burner. So today I tried to knock those items out. I got 4 or 5 things plus some laundry done. 

Susan and Sarah came by to check on us and brought Alan got some cool Astros drawstring pants! Plus some more pants he ordered last night arrived today. We haven't gotten everything organized yet. The medical supplies are still just hanging out in the big bag they gave us. That's a project for tomorrow. 

This evening before dinner we went on a walk down the street. It was nice to speak with neighbors Jim and Jennifer. We went on to walk 0.6 miles. Tomorrow we will start doing more short walks to continue to build back his strength. We enjoyed seeing squirrels on the walk and joked how the 10th floor needs to hide some stuff squirrels around for patients to find as they walk!

I will probably reduce down to more random updates for this longer at home portion of recovery. We are trying to be prepared for the hills and valleys of this journey. 

Please pray for continued progress. Slow and steady is the goal. Pray for Rebekah, Audrey and The Woodlands High School Band, as they leave around 5 am Saturday morning for San Antonio for the 2 biggest and last competitions of the year. They return home late Tuesday. So safety and for wise choices! Pray that they all perform to their very best! Pray for patience for all of us!

- Mel

Recovery Day 16

HOMEWARD Bound!!! Yep, we broke out. After 16 days of recovery and a day long surgery, he is home! Praise Jesus!

We are emotionally and mentally preparing for the remainder of this roller coaster recovery. All the doctor teams have reminded us all day that this recovery is a marathon roller coaster which seems only appropriate for a Cold Brew Shake N Bake! Bubbly (Dana on Fournier's team) said today that it could take as long as 6-8 months for Alan to be back to his base line. 

BUT Dr. F told us yesterday that while he did have that setback and will probably have another 24-48 round of his innards shutting down again, he is not worried about Alan going home. "Most of his patients, whether inpatient 10 days or 21 days, aren't as dedicated to doing everything as you." That quote made my wife heart so proud. Alan has worked so hard. Yes he has a long way to go, but he has an amazing spirit and will be completely successful! He's already an incredible warrior and survivor! So grateful for him!

Tonight the girls don't have band! So we are looking forward to a night at home with them, watching the Astros win!

Recovery Day 15

Another good day. He ate real food! With no problems! 

He slowed down the amount of walking yesterday, having realized how much he had overdone it for the previous 3 days. So he walked 5-6 times but not as far as before. Today we did the same. Taking it easy. 

I think the key is he is learning patience with himself. The doctors are all cautioning him to be patient. He has a long recovery still to go. 

One thing I am watching is a drain spot. The doctors are not concerned but it's still oozing some, so we are changing that dressing still. I've been thrilled that the nurses have let me help more. It has made me feel more prepared for when he does come home and it's all on me. 

The next 10 weeks will probably still be tough! He's going to have to have a ton of help. And I'm sure I will not be the best nurse but we will get through it. 

Sorry for the super late update but it was busy with lots of people in and out, shower, walk, and then the Band's Send Off to state! Go Band!

- Mel