Great news from doctors today!

🔺Dr Daver (MDS) said “yes” remission and looks like my genetic mutations are gone because of donor’s blood taking over. This is significant because the mutations put me in a higher risk category of MDS.

🔺Dr Champlin says later this week he wants me to start a maintenance drug for a year. Because cancer likes to hide this is standard protocol after transplant. It is called a chemo light. It is two pills a month with (hopefully) no or few side effects.

🔺There is no evidence of either Mantle Cell Lymphoma or Myelodysplastic Syndrome. Remission on both counts.

🔺The best news is: Dr Champlin said if I do okay on this maintenance drug, we can leave for home by Dec 21!!!!

🔺So,”🎼🎹we’ll be home for Christmas🎹🎼!!!”

I am so super excited!!! Love you all and thank you for being so supportive of us!

Kay & David

Yesterday was the halfway mark of 100 days post transplant!!! Cannot wait to hear the words from my team- You can go home! Still hoping for before Christmas though Day 100 is Jan 1!

Friday was our warmest day for awhile- maybe for the rest of our time in Houston. We took a drive to a beach on the gulf, Surfside Beach. It is an hour away and a bit farther south than Galveston (which we have been to several times). In comparison it is a more residential than tourist area. We saw a juvenile Roseate Spoonbill bird. It was pink! We have never seen one before! There was beach activity because it was 80 degrees. We walked a bit on the beach, I sat in the sand while David flew his kite, we drove around the area looking at the houses built on stilts and got an ice cream treat before driving back home. It was a wonderful time away from our tiny house. I feel pretty good most of the time. Still find myself resting each afternoon. My gut is still my biggest issue but it is better than it was. I am eating better but still not normal. I drink an electrolyte drink (yuck) each day to keep my magnesium up. The anti- rejection medicine I take lowers magnesium so I am on an oral magnesium pill, but am trying to eat and drink magnesium rich foods. The pill can make me nauseous so hoping the food and drink will get me off the pill only go to see my doctor and have labs drawn once a week now. We try to walk around the lake each day, have short outings, are working on a puzzle and I am making grandkids Christmas gifts. David rides his bike and enjoys visiting with many of the people here.

Our oldest daughter, Amy, arrived on Thursday afternoon and David left on Friday morning. David took the car so we rented a golf cart to get around the RV park for a couple days. David went camping and bike riding in the Hill Country near San Antonio.

Amy went with me to clinic on Friday then made a Mexican Bake and orange pineapple gelatin for the family with seven boys. We had a small bake for us. It was delicious! We watched a documentary about Jim Allison a research doctor at MDAnderson who won the Nobel Peace Prize for medicine in 2018. We had wonderful conversations all weekend.

On Saturday, we held a Boot Walk in our park for locals to raise money for MD Anderson research. There were seven walkers and overall with donations from family and friends, we raised more than $700. It was a beautiful day for a walk. After a rest, we started a 500 piece round puzzle. Again more conversations while we worked on the puzzle.

On Sunday, Amy drove us around the park in the golf cart just for fun. After lunch, we worked on the puzzle. Amy did some much appreciated cleaning for me. David arrived home around 4. He and Amy made dinner and we had more good conversation. Then we took Amy to a hotel near the airport since she has a Monday 6:30am flight.

What a wonderful blessed weekend visit Amy and I had and David had a relaxing getaway.

I feel good! Stronger each day. I no longer have to go to clinic for Magnesium and Potassium infusions. Today I have an appointment with my transplant team including my doctor Dr Champlin. I am at Day 45 post transplant! Every day that passes brings us closer to going home.

God bless you all. Keep looking up!!! He is with you. Kay

Dave will send pictures next post!

I’m helping give back to MD Anderson – who has cared so well for me! You can donate for the annual Give Cancer the Boot drive here:

REGISTER OR DONATE HERE:

Also, join me and my family on Saturday, November 5th, as we all walk 1.2 miles (from all over the country!) in some “boots” to think about cancer research and raise funds for MD Anderson!

We were told yesterday that I am in REMISSION! There is no evidence of Mantle Cell Lymphoma or Myelodysplastic Syndrome in my blood.  This means the transplant has worked as far as ridding my body of detectable cancer cells.  Praise God for your answered prayers. 

We still have to stay in Houston so the team can monitor me for Graft versus Host Disease (always a transplant possibility). This is rejection by my body of the donor cells.  *(See paragraph below for more info)* Although there is no indication of this currently, it is still possible so in Houston we stay.  

We met a young family here from Missouri. They have 7 boys ages 9 to infant. Mom had breast cancer. Went through treatment. Came for a follow-up and cancer was found in her brain. She has had gamma knife radiation and a brain surgery. They live in an RV. They are a homeschool family who love the Jesus. If the Lord brings Caleb and Sarah to mind, please pray for them. While Amy is here this weekend, we are going to make a meal to take to them.  When I told my mom about this family, she wanted to help them.  She can’t cook for them (as she loves to do) so she is sending a check which I will use to purchase the food, which Amy and I will prepare and deliver.  So exciting to bless them through three generations.

This morning I was remembering how while in the hospital just getting my blanket off, rolling over and getting out of bed felt like I was moving in quicksand. Yesterday I walked more than a half mile to my various appointments. God is good! He is so good to me!

Thanks once again for your prayers and encouragement. 

Much love and many hugs, Kay

Today is Saturday but it is a clinic day for me. So waiting to go back for my magnesium infusion. Dave will hook me up for my antibiotics at the same time. Both infusions take two hours so doing them simultaneously saves time!I am doing better.

My appetite improves each day. I can walk farther than I could last week. I am filling my time with some crafts for some grandkid’s Christmas gifts, reading, music and Scrabble most nights.

Right now we are cheering our Houston Astros on as they play the Philadelphia Phillies for the World Series Championship. I have always enjoyed playing (softball) and watching baseball. It has been fun to follow the Astros. They are a great team!

This week some big changes are ahead. Only two days to clinic, the IV antibiotics are done on Thursday and our daughter Amy is coming to give my wonderful caregiver David a few days break. He is going to get what he calls windshield time and explore the Hill Country of central TX. He hopes to get in some bike riding and hiking and just time away from the intense past few months of caring for me. We are very excited to have Amy come for a few days!

Today, Sunday, I walked around the bigger lake. We named this bigger lake- Lake Annie and the smaller one- Lake Helena after our two youngest granddaughters. The distance is 1/3 of a mile. Not a huge distance but quite a milestone for me!!! On his bike ride today, David saw six turtles at each lake sunning themselves. There are also white herons on the lake. We know God’s got us. This road is long but the Light is shining and leading us each day (sometimes each hour). Thank you for your love and prayers.

We feel both! Kay

It has been 30 days since my transplant! This week I was given Friday and Sunday (today) off from clinic. I have a labs tomorrow and a Bone Marrow Biopsy tomorrow but no clinic ( that means no infusions. I still have my at home antibiotics infusions three times a day. 

I am eating a little more and feeling stronger each day. Mornings are still hard to get going but getting better. 

Today  was my first outing since being discharged ten days ago. We went to the Hope Lodge (where we stayed for three weeks before moving into our  tiny house.   We made friends with a couple ten years older than us who are strong believers. We took a Wild Blueberry pie from our favorite dessert spot – House of Pies and visited outdoors  in the garden area at the Lodge. It was warm but windy and was a wonderful time of fellowship.  Barbara is facing metastatic breast cancer in her brain and is undergoing full brain radiation.  She is totally at peace that God is in control  and will hold her through it all.  Such a witness of faith in the Lord.  If Barbara comes to mind, say a prayer for her.  Earl, her husband, makes two pots of soup once a week for anyone staying  at the Lodge. His ministry to others while being caregiver to Barbara. God is so good to show Himself to us in many different ways, Earl and Barbara being just a couple.  

A bone  marrow biopsy  is no fun. It is pretty uncomfortable-  prayers appreciated   Hopefully it will show no evidence of disease ( the Myelodysplastic syndrome). A week ago I had a PET scan that showed no evidence of disease of the Mantle Cell Lymphoma. The goal of this Transplant is to remove both of those blood cancers from my body. Praising God we are half way there!!!

Love you, Kay

On Friday evening I was finally discharged from the hospital! No more inpatient for now.

However, David has to hook me up to IV antibiotic infusions three times a day. This means hook up at 6am unhook at 8; hook up at 2 unhook at 4; hook up at 10 unhook at midnight. Then we have to go to clinic every morning for blood labs and any infusions needed. Mostly the infusions have been magnesium and potassium. I have not needed blood products for over a week. My important blood counts, red, white and platelets are all trending nicely upwards. Which means engraftment has significantly taken hold. Praise the Lord!

I also take 6 pills every morning between 8:30 and 9 and have to give myself a blood thinner injection in my belly. The regimen makes for a rough morning for me. I am usually tired from not a great night’s sleep, from abdominal cramping from eating more solid foods (which is good but my gut has to readjust) and from just general fatigue. Can’t say I am a joy to be around in the morning. But most days after the clinic time, I perk up and the afternoon and evening go better. More pills, another belly injection and final infusion at 10pm.

When I was inpatient, we met a young man (18 years old) named Liam (from the mountains of NC) who had a stem cell transplant only four days after me. He (and his mother) were an inspiration to me as I saw him recover and get stronger quickly. He was tall, bald and raced around the hall with his IV pole. He released the day before me. May God bless you with a long and cancer free life Liam.

One day when we were walking the halls, we saw our first nurse from my clinic time with Dr. Wang four years ago, Orlando. While I was treating for the first Lymphoma, Orlando left the clinic to work in the hospital. He said the hospital hours would give him more time with his family. It was nice to run into him and chat for a few minutes. May God bless you and your family, Orlando.

Motivating to be active, do exercises and walk is a struggle for me right now. I feel weak and don’t feel like I have the energy to do anything. It is really hard to need to get moving but feel like just sitting, especially as “my time” just for me doesn’t happen until 4pm due to all the IV’s earlier in the day. Prayers in this area would be appreciated.

A neat thing to share: Being from the Detroit area, as a child we always drank Vernor’s Ginger Ale (made in Detroit at that time) when we had a tummy ache. We called it “sick pop”. My own children knew Vernor’s as “sick pop” too. My Michigan family would bring Vernor’s to me whenever they drove to KY for a visit. (Thanks Family!) I could occasionally find Vernor’s in Rapid City at Family Fare. I would order it from Amazon. There is no Ginger Ale like Vernor’s. I was craving Vernor’s while in the hospital so I googled where to buy it in Houston. One of their major grocery stores (H.E.B) carries it but as we soon found out not every store had it in stock. So David found one near the hospital that has it. Today we bought the last two twelve packs on the shelf. I drink it in small amounts and stir the fizz out of it. But boy does it taste good!!!

One of my doctors the last week in the hospital was a Michigander, saw the Vernor’s can and commented that he had just returned from a Michigan visit with his kids where they enjoyed Vernor’s. He asked where we bought it in Houston. We were happy to share our find and a can with him.

So the regimen, I shared at the beginning of this post is to continue for at least 2 1/2 more weeks. Hopefully I will get stronger over that time. It is a bit overwhelming to have medical stuff still dictating EVERY day, but one day soon this will end. Hopefully in the next three weeks! As always we appreciate your prayers for me and for my fabulous caregiver, David. He has been AMAZING! There is no way I could have gone through this time without him by my side- this is what ‘in sickness and in health’ means. He has to be my nurse, cook, laundry guy, encourager, grocery runner, pill picker upper, prayer warrior, devotional reader, driver and so much more.

Until next update,

Love Kay (and David)

Today, Oct 14, I should be discharged from the hospital. I have been here for 29 days. We are ready to get out of here for sure! We have to go home with three times a day IV antibiotics for a month. They will train David how to do the procedure. Yay!!! We are getting out of the hospital!!!

Each day has it’s own ups and downs. Some meal times I feel like eating, and others I don’t.

Friday my WBC was way up to 5.9! Today it is down to 4.5. So this is to be expected, too, a little up and down, but all trending the right way overall. Other blood numbers are also trending upwards. My medical team is very encouraged about this! (and so are David and I!)

On the downside, it has been somewhat disheartening that I have to remain here in the hospital, since I am feeling much better than at this time last week. The only reason I am still here is because I am on a 4x per day IV antibiotic regimen for at least another week or so. Until they find an alternative for that, a portable pump or some other idea, then I will remain here in the hospital. On the upside, I have not needed any blood transfusions in a week! My engraftment is happening!!! Without the infection and antibiotic needs I would be going home.

You might think it is boring here but half of my day is people coming in the room to give meds, give an injection, hang an antibiotic, take vitals, doctor rounds, linen changes. Then there is the everyday self care, eating, walking, napping and in room exercises. In the evenings, David and I play Scrabble (no win/loss record as we do not keep score- hard for a competitive Scrabble player like me), watch movies, football or The Chosen videos. The days pass fairly quickly when I feel good as I should improve each day now.

God has us!!! He has shown His faithfulness to us during this time in so many ways. The specific caring nurses that I have and the doctors who are such cheerleaders and full of information they are willing to share. Even the housekeeper who calls me ‘Mama’ and doesn’t speak much English. These are beautiful people God is using to bring me hope and a future.

“For I know the plans I have for you, plans to prosper you and to not harm you, plans to give you hope and a future.” Jeremiah 29:11

Much love, Kay