What if...

I don't often ponder what they would be like if cancer had never entered the picture. I don't think on how different our lives would be if cancer had never come. 

Today I was struck by the videos and pictures of 6 years ago at Santa's Wonderland with the girls. They were younger, yes, but there was a freedom in them. There was no fear in their faces. But just a month later, there was terror. Seeing their daddy unable to stand fully upright and then all that has come since, it does something to a kid. 

Heck, it does something to me!

Someone once mentioned how something had changed in the last few years and how they wish it was still the same. I thought to myself then, yeah I know I have changed a lot in the last 6 years. Walking this journey alters you from the inside out. Or maybe the outside in. 

I'm sure I would have less grey hair! Thank you Lord for hair dye! And I sure would love to have the 6 figures we have spent out of pocket on medical expenses in that time back! 

But seriously, nothing in our lives is remotely the same as that evening at Santa's Wonderland 6 years ago. Every single aspect of our lives is altered - impacted by cancer. 

What would be different? Would I be as protective of my family? Would Rebekah have the same friendships she did then now - because none of her close friends are the same? Would Audrey have matured as much as she has? Would Alan or I have the jobs we do today? Would our relationships with our parents, siblings, grandparents look how they do today? What about our nuclear relationships - how would they be different?

I have always tried to focus on the positive changes in us due to cancer. I know these experiences have given us deeper meaningful relationships, and definitely a deeper faith. 

But today it just struck me how much cancer has taken. Their carefree childhood. Friendships. Time with him while he was sick. Time with me while I worked to provide, when he couldn't or time with me while I cared for him. Career changes. 

Just these last 11 weeks have changed me. I see it. I feel it deep inside. I don't see or feel the changes in the girls as much, but I'm sure they are there. How can they not be? They aren't insulated from the challenges these 11 weeks have brought.

If 11 weeks has changed me so much, how much more have we all changed over the last 6 years... I'll never know. We don't get do overs. There is no crystal ball or snap of the fingers that allows us to make different choices than the ones we already made. Nothing to show us the life we would have had of cancer never came. 

God has guided us down this path for a reason. And even though I hate cancer and hate some of what it has done in each of us, I am grateful. Which is such a weird tug of war of emotions. I just want to sit and cry at the pain, fear, loss we have suffered. And yet I want to sit and rejoice at The Lord's faithfulness. 

So for now, I will sit and let My Lord comfort my tears, my fears, and my hesitations for the future. I will let Him focus me on the blessings of today instead of my worries and my regrets. 

Lord, I fail so often. I say the wrong thing. I say nothing when I should speak. I jump to action when I should sit. I sit when I should act. Thank you for your grace and mercy over me. Thank you for your forgiveness and your love that I don't deserve, but You gave anyway through the sacrifice of Your Son. Lord, heal us all. Lord, use us for Your Glory in spite of our failings. - Amen

Recovery Day 73

Over the last week his drain has gotten cloudier and cloudier in the output. While the output has decreased from 60 ml a day to now closer to 30 ml, the amount and cloudiness is concerning to us. Yesterday was 2 weeks since the drain was put in. They had hoped for only 10-14 days but with the output level, there is no end in sight. 

Christmas morning I noticed a spot on his incision that looked like it it had been rubbed raw or blistered. We snapped pictures and used a bandage and some of the antibiotic ointment that was leftover from when he came home. It got worse Monday and Tuesday to where it looked like it had infected fluid bubbling out of it. We snapped more pictures and sent them to the team, expressing our concerns. 

Wednesday around lunch time, Thuy, Dr. You's nurse responded and said the docs were all out but Karen, Dr. Fournier's PA could see him at 10 on Thursday. We jumped on it. And then the plastics doc's nurse called later in the afternoon and offered Friday but really wanted to see more pictures. We stuck with meeting with Karen today. 

This morning we drove down just after rush hour to what feels like our second home. Got princess parking on my favorite floor of Garage 10. The GI Clinic on floor 7 at Elevator A was an empty floor, literally empty. Daniella, Dr. Wise One's nurse got to us right away. 

Karen isn't sure exactly sure what is going on with the incision issue. She thinks it could be another fat necrosis pocket or his body reacting to one of the deep sutures or the infection but she hopeful it's not that. She wants us to watch it closely. The cloudiness of the drain output she is also hopeful is the dredges of the fluid pocket. 

Alan started back walking Monday after feeling bad or about 2.5 weeks so. Karen thinks that his walking is helping get all the junk out of there. Since Alan is still having some UTI symptoms, Karen ordered another urinalysis and urine culture. Since today was the last day of his current antibiotic, she refilled it until we know if something other than Augmentin would work better. 

So for now we wait. We wait on the infection to get better. We wait to see if the incision site gets worse. We wait to get the drain out. We wait on the fevers to stop. We wait on him to be able to sit normal. We wait on him to not need assistance with normal activities. We wait on complete healing. We wait on God's timing.

Recovery Day 65

So today marks 7 weeks since Alan came home. 7 very long weeks. 

The cultures on the fluid in Alan's pelvis have all come back now. It's confirmed he has Strep B, E. coli, and prevotella bivia. All are gut based bacterial infections. He is on his fourth round of antibiotics! 

Generally since last Wednesday's drain placement, Alan has had a lot of pain where the drain is, continuing low grade fevers, and between 50 ml and 70 ml of fluid removed through the drain daily. 

The last couple of days he has been more tired and more run down. Sleeping more than in the past and just generally feeling off. 

Dr. You believes the best thing is the drain. Getting all the infected fluid out as possible. It mostly looks fine but occasionally has puss remnants, like grimy little bits of puss flakes or something. I can't think of any other way to describe it. 

In good news Alan's bed sore is finally healed after 6 weeks of treatment. Sadly he can't really tell due to the drain placement being so close to where the bed sore was. 

While Alan is healing as best he can, Rebekah had her wisdom teeth out yesterday. Her top right wisdom tooth was still to high up that he was unable to remove due to the proximity to her sinuses. So he left it to remove later. 

She was pretty amusing post surgery as she was quite mad she was not allowed to have Chick-N-Minis. She has tolerated liquids and soft foods well today. Hopefully she will be able to eat some of our Christmas dinner. 

An update on Audrey, since I haven't mentioned her in a while. She has focused intently on her physical therapy to heal her back. Band kept her from healing but thankfully she stayed at a steady place throughout band. Thankfully she was able to decrease next week down to once a week. We continue to pray that she will stop having regular pain from the accident in June. 

We are looking forward to calm, low key Christmas of healing. I pray all of our family, our friends and our chosen framily have a wonderful holiday. For those of you mourning this season, we pray so deeply for you in your grief and we love you. 

Recovery Day 58

Maybe now the setback will start to heal, and we can now start upward momentum again!

Today was drain day! They moved his "call time" up by 2 hours late yesterday due to another cancellation! So we missed the rush hour traffic but still made it down there fairly early. 

By 1 he was in recovery! Everything went well with the Interventional Radiology team. After an hour in recovery, I got to harass him by his forced time in a wheelchair! We went from the 3rd floor Elevator E to the 7th floor Elevator A. If you haven't spent time at MD Anderson, that means nothing. But to those of you that have found yourself in the maze of these buildings, you get it. 

The waiting room was completely empty of the CRC/GI Clinic, which was something we had never encountered before. Kelly, Dr. You's PA had told us yesterday to come by after the drain placement so they could change out the bag IR put on. Since the clinic was empty, it took them a bit to find someone from her team!

After the nurse shows us to the room, this head peaks around the door frame and Dr. You is there. Nurse Thuy brought in some supplies then we watched the bad mammajama that is Dr. You! She proceed to change the bag on the drain from a basic gravity bag to a suction bag with a valve for flushing. Watching a surgeon work is always fascinating, but especially today. She cut the tube and placed the suction bulb on it. Then she got the valve placed on the line where the smaller catheter connected to the tube leading to the drain. She left to get something else and then came back with a face shield! She removed the cushion on the shield that goes around the forehead and created the cushion for the valve so that it wouldn't hurt him if he sat or leaned on it. Her skill was impressive, but her compassion was equally such. 

She told him to plan on 10-14 days on the drain. She relieved the IR team had removed 50 ml of milky puss from his pelvis. The fluid was running clear after they had suctioned all the infection out of him! 

Nurse Thuy taught me how to flush the drain and we headed home with tons more medical supplies for the maintenance of the drain. 

Tonight he is wiped out from the anesthesia. And we have no idea what things are going to look like as we figure out living with the drain. Christmas celebrations start Saturday and right now his attendance is majorly in the air. Tuesday Rebekah will get her wisdom teeth removed. 

Truthfully we need prayer. Alan is hurting post drain placement. I need a moment or two to process. Cancer sucks. Even with cancer no longer visible on a scan. Even with it supposedly gone. Cancer's effects are deep wounds in our bodies, minds, and hearts! Today he and I are feeling the full effects in every aspect possible. So tonight we hold tight to he's here and will be for the foreseeable future. 

Recovery Day 53

The end is not in sight. This recovery is soooo much of a roller coaster! And I LOVE roller coasters! I mean my dad and I rode the Texas Giant 23 times in 2 days the year it came out - that's how much I love roller coasters. I rode my first one at 5 and never looked back! I loved it!

This roller coaster is not fun! It makes me scream but not with joy! It makes me cry but not out of excitement. 

We knew this would affect the end of band season, Halloween, and probably Thanksgiving. But now it is impacting Christmas and we are NOT okay. 

So the fevers are mildly better last night and tonight, so that's good. He's felt off though the last couple of days. Then yesterday he almost passed out in the morning. Thankfully I got him to the bed in time. Scared me. It's the second time that has happened. But it has been a while since the first time! 

So work from home is a must right now. I cannot risk him passing out with no one home. We have fought cancer too hard to have him hurt himself by passing out on this tile floor!

Alan and I with all our medical degrees (ha!) believe that the fluid in his body is infected and it is causing his fever. And since the fluid is right next to his urinary organs, it is impacting the UTI and its lack of healing. After 5 days on Cipro last week and now Cipro and Flagyl for 5 days now, it's better but not anywhere near healed. With some other symptoms, we really, really believe this is the root of it all. 

Dr. You's actions seem to think that too. She has been in a rush to get that drain put in to remove the fluid. They have been pressuring the Interventional Radiology teams at every location to get him in on any potential cancellation. 

Today we were offered a 6:30 am slot on Tuesday at the Med Center. But unfortunately due to an item on the Commissioners Court agenda, I am needed there at 9:30 that morning. So I told Alan to take it anyway because he matters more than anything else! Two fabulous friends reassured me about my choice, as I was crying about how wrong it is that I feel like I can't be there for my husband like I need to. 

Praise be to Jesus though, when Alan called IT Scheduling back, they had a 12:15 on Wednesday that opened up in the Med Center. So Wednesday we will go in for this procedure to place a "deep drain" in him to try and get all that junk out of him. Praying he doesn't have to have the drain long and that this finally resolved all his setbacks and issues. Praying that there are no more issues after this. Praying it doesn't impact Christmas as much as looks like it will. Praying for his healing and my heart! It's so heavy with worry for my husband. 

And my praise, as I will always find the positive, while this Christmas looks to be different, we will make the most of what we can!

Recovery Day 49

7 weeks! So I haven't updated since last week because it's hard to know how to update. He's not horrible. But he's not well. 

So last Tuesday Alan went to the ER at MDA at Dr. Fournier's insistence that morning. They took blood, urine, CT Scans. The thing we were hoping for happened, a minor infection was found! It was just an UTI and he was getting kicked outta there! Praise Jesus! I had run home to take Audrey and I to our appointments that couldn't be moved. After those were done, I met Rebekah so she could take Audrey home and I could race back to the med center to pick him up. 

BUT on the way down Alan called, the radiologist had seen an irregularity on the CT Scans and was going to discuss it with Dr. F before Alan could be released. So I didn't have to race as fast now since we were in a hold pattern. 

After I got back, Dr. F came by and explained. The radiologist had noted fluid and air in his pelvis. This is not uncommon post-MOAS he explained. So we were going to get the UTI handled and then if he didn't feel better in 24 hours we needed to let them know. We got home about 10 pm. Long, long day! But we were grateful. 

Today was his two week follow up with Wound on his bedsore and follow up with Dr. You on the fat necrosis that is still seeping from drain site she had in him before release. It worked well for her to also follow up on the ER visit. 

So Wednesday through last night, Alan was on Cipro for the UTI. But every day the same thing happened, he acted like the little kid he really is! Like most moms know, your child will be fine ALL day long, even appear to be getting well and then as soon as the doctor's office closes and night starts to fall, BAM they have a fever out of nowhere. Yep, that was Alan night after night for the past week, starting at 5 to 5:30, his chills would return, his temp would start slowly rising. He was due for Tylenol at 8 but we would wait until 9ish to see how high it would get over that hour. He would top out around 100 and then take Tylenol and go back down. Around 5 am he would wake up dripping with sweat and his fever having broken. So we have been very confused as to whether this was just the UTI being a really bad one or the fluid being an issue too. 

Wound was wonderfully helpful today. They were able to remove all the dead skin from his bed sore. We have another treatment to use in this phase of the healing process. Today's nurse set a follow up for the 19th but has hopes we will be able to cancel it!

Dr. Y had called while we were driving down. She had a conflict come up at our appointment time so she asked we come straight over from wound and ask them to page her. We did and were seen really quick. 

She didn't like that he was still running the temp in the evenings. She ran another urinalysis which is better but not well yet! She put him on Cipro again and another antibiotic to finish off the infection!

She is concerned about the fluid because it's more than they would expect. So she is getting him set up with Interventional Radiology to have the fluid drained. Not sure how soon this will be set up or what all it entails, but I'm sure we will find out soon!

I'll keep you all informed as we move forward along the path of this second setback in a week. 

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

Recovery Day 14

2 weeks ago he was in the LONGEST surgery! 

Thank you for the prayers! Today has been fabulous! He has movement! Everything is working again!

He got the tube out this morning! He started back on a liquid diet!

He had a shower! And we went to the observation floor again!

He also admitted he has overdone a little bit the past two days. He walked like 9 times yesterday for a total of 2.67 miles. So we are taking things a little easier today!

Pray he continues on a successful recovery and release with no setbacks. 

Recovery Day 13

Thirteen Days! He's doing AMAZING! Over 2 miles walked yesterday. Amy and Alan enjoyed the Observation Floor and the Astros win!

Today Keith came and hung out during the morning, while I got the house back in order and went to H‑E‑B. Before I got here, Alan had already walked 1.34 miles over 6 walks. We have walked twice more, including a lengthy visit to the Observation Floor. We had a great view of the NRG! 

The big news of the day is that at 9 am, he started a gravity test on the NG Tube. A gravity test is where they disconnect him from the suction for 4 hours. And then for an hour, they connect him back to suction to see how much is removed from his stomach. The goal was to have less than 200 ml suctioned out. He passed! He only had 50! But we still haven't seen much out of the end of the bowels. So Dr. Ylu (Classy) and we agreed to keep the NG tube overnight. We would rather not have to redo it again! So he is back on ice chips now and waiting for movement!

Before I leave for the night, we will walk at least once more, maybe twice! Pray for everything to move along and for more progress tomorrow!

- Mel

Recovery Day 12

So not going to hide anything. Today sucked. We are struggling. Both of us. The waiting game is hard. The body has its own schedule and it doesn't match what we wanted or expected. 

Early on we were told that the average stay is 10-11 days. But they always plan for at least 14 days inpatient. Alan told me his goal was 9, and I admonished him that his goal is whenever is best. Dr. Wise One told us the other day that his patients have the longest stays of any surgery.

Alan is struggling with nothing happening. I am struggling with nothing happening. We are struggling with it being the finals of band season and him being in the hospital and not at competitions. 

So tonight I FaceTimed Alan and his sister, Amy, from UIL Area Finals, which I raced to from the hospital. 

We are trying to focus on the positives. While that has been hard today, here are my positives. I successfully changed the colostomy bag!!! We went to the observation floor again today! And then when I could tell he was really not good, we went outside! He will have walked over 2 miles today! And some really good buddies texted and called to encourage him! 

So while I would give the day a C overall, we can always find bright spots. We just have to look!

And Go Astros and Go Aggies!

- Mel

Recovery Day 11

Thankful God is with us. This setback could have happened after Alan was released. We could have been rushing him down to the MDA ER. But God. His timing is perfect. He allowed this valley to occur the night before release was suppose to happen!

This morning at around 3:30 Alan had the NG tube placed again. It was definitely the right call. The amount it immediately and has continued to suction out of his stomach explains all of vomiting and nausea. 

All the doctors have concluded that his bowels and stomach all decided to shut back down. They said Psych! Given the trauma they have been subjected to, I can't really blame them. Dr. Wise One, Dr. You, and their teams have all reassured us that this is common for HIPEC patients. So we will keep walking to wake up his GI tract! 

By 3:30 he's done almost a mile around the floor today. I expect it will be close to a mile and half by the end of the day. 

There isn't much else to update. We are just playing a waiting game for his organs to stop playing games! They need to wake up and work. No estimated time of departure from this place until he is back off the NG Tube. 

Prayer Needs:

• Competition for girls and TWHS Band tomorrow
• Patience
• GI Tract to work and stop playing games
• Wisdom for doctors

- Mel

Recovery Day 10

Alright so today has not been what we planned. And trust me it has totally gotten to me. I am mad. He was suppose to come home! I am tired. There is a reason I don't work in town! I am sad. My girls haven't seen their dad other than FaceTime since 10/16! I am angry. Cancer sucks and even after it's gone the effects still stay!

Alan has continued to be nauseated all day. He hasn't vomited since before 7 am. But he is on 3 different anti-nausea meds to try and control it. If he vomits again, they will place the NG tube back in. So yay, prayers are working for 9 hours now. 

Take that back. He just vomited at 4:10 as I was writing this. 

I HATE CANCER!

Both Dr. Wise One and Dr. Big Sis stopped by. Dr. F reassured us that this is not a stomach bug but quite normal for Shake N Bake patients. He believes in 12 to 36 hours Alan will be better. Dr. Big Sis defers to Dr. Wise One's insight on HIPEC. He also said that his patients have the longest stays because of this very thing. The recovery is not a straight vertical line like most surgeries. It has a lot of hills and valleys. We have hit the first valley. 

Lord, please stop the nausea and heal my husband so he can come home!

- Mel

The Setback

The setback. He was bound to have one right? I mean he can't just fly the coup today like we were planning yesterday. Yep, you read that right. When Dr. F came by with the fabulous pathology report, he told us he was going to cut us loose today. 

Funny how quickly things can change. Which is why I didn't share that tidbit until we were walking out of the hospital. I've learned with this SuperUnicorn, that things and plans can change on a dime. 

Last night after having some gas trouble in the early evening. Alan battled nausea and then at 2 am began vomiting. They did X-Rays and said that Dr. F would make the call on what to do this morning. So at 4:30 I left to make sure I got here before any doctors came by. 

One of Dr. Big Sis's fellows came by close to 6:30, not long after he threw up massively again. She hadn't seen the X-Ray but was concerned since they had moved him to nothing by mouth again overnight. She said the last drain would come out today! Yay! But that she would coordinate on his troubles with Dr. Wise One's team. 

With 5 minutes, Dr. Classy, one of Wise One's fellows, stopped by. She said the X-Ray showed no obstruction and his white cell count was elevated slightly yesterday. She is hoping he just somehow caught the 24 hr stomach bug that is "going around." The plan is to monitor him and if it gets worse then they will put the NG Tube back in. He does not want that. He would do anything to avoid it. 

So we need some prayers. Prayers for whatever is plaguing his GI System to go away! Prayers for NO NG tube replacement. Prayers for no more setbacks. Prayers for his heart as he was ready to come home. Prayers for patience. Prayers for wisdom for the team, specially Dr. Wise One (Fournier), Dr. Classy (Ylu), Dr. Bubbly (Dana) and Dr. Big Sis (You) and her team. Everyone else had cleared him to be discharged today. So prayers for their wisdom on when that is now realistic. 

Thank you all for walking this journey. 

- Mel

Pathology Report

What a mighty God we serve! What a mighty, mighty God! 

Of the 13 areas that were taken in surgery, 1 was Mooney with active present cancer. To quote Dr. Wise One, "which would have killed you." Pathology showed that it had been altered by immunotherapy and still had cancer. Thank God for Dr. Big Sis and Dr. Wise One operating. 

4 other areas that they removed while suspicious had no evidence of cancer ever having been present. Huge praise!!

The 8 remaining areas all had evidence of previous cancer. BUT currently there was none! So while we only ever saw 3 tumors on the scans, at some point there were 3 times that amount of tumors. It appears immunotherapy worked on all but Mooney! 

Additionally, all 16 lymph nodes removed were negative for cancer! All around an incredible report. 

So while Mooney was a stubborn little booger! A scalpel took care of him! And all visible signs of cancer are gone. NED - No Evidence of Disease so far with another set of tests and results coming back in 6-10 weeks!

Next steps: 

Discharge

6-10 more weeks of recovery

Follow ups next week

CTDNA Blood Test in 2-4 weeks to test for microscopic evidence of disease

CTDNA Results 4-6 weeks after test m

Regular Follow Up Scans etc

From this point forward, Dr. Dude, Dr. Big Sis and Dr. Wise One will be actively following Alan! We cannot begin to express our gratitude! While we still have a long way to go on his recovery and on adjusting to some permanent changes, he's here! Praise the Lord, he's here. 

Thank you all for your prayers! This could not be a better report! Thank you, thank you, thank you!