Since my last update, Kristin has continued with her Consolidation treatment. She is on the tail end of two weeks here in St. Louis at Barnes Jewish that began with her 4th Bone Marrow Biopsy on February 5th. We were able to enjoy the outpatient status while we waited the 5 days for the results. We had a great time exploring St. Louis, beyond the hospital, with visits to the Science Center, Planetarium, Art Museum, and Aquarium. Her biopsy results were encouraging once again. Negative on the Minimum Residual Disease test, 0% Blasts on the Leukemia Flow Pathology, and clear of any new genetic mutations. In other words, she remains in a chemo induced remission and will complete the remaining Consolidation cycles before moving on to the Maintenance Phase of her treatment plan. We will learn more about exactly what this phase will involve after she finishes up her next and final Consolidaiton cycle. While a Hematopoietic Cell Transplantation (HCT) Transplant is still a possibility at some point in the future, her doctors feel the the Chemo Only protocol will keep her in remission for an extended period of time. HiDAC Cycle #3, which began on the 11th and will wrap up tomorrow morning, has hit Kristin a bit harder than the first two cycles. She needed her first transfusion of this cycle on Day+2, and has been generally exhausted. She is starting to see the cumulative effects of the chemotherapy, but her body is still holding up remarkably well.   

Kristin is back at Barnes for her next course of Consolidation Chemotherapy. On Tuesday, at her Clinic Appointment, her initial bloodwork showed that Kristin's Liver Enzymes were elevated so her Oncologist ordered additional bloodwork and a Liver Ultrasound as a precaution, holding the start of the next HiDAC Chemotherapy Cycle. The ultrasound revealed no abnormalities, and while still above normal, her liver enzymes are consistently dropping. After getting the all clear on her Liver, Kristin received her first round of HiDAC Chemotherapy on Wednesday evening, and has just finished up her second round which started early this morning. She will receive four more rounds before being released sometime on Monday. She is tolerating the chemo very well once again, with extreme fatigue being her main side effect. Her next Bone Marrow Biopsy has been scheduled for February 4th to determine if the HiDAC Chemotherapy is keeping her in Remission.

The cutoff for the initial order of Kristin's Crew t-shirts is Christmas Day, and everyone should receive their shirt around the first of the year. So far we have sold over 20 shirts, and received nearly $200 in additional donations. We are both very touched by the responsivness and generosity of those in our lives. You guys make it easy for me to assure Kristin that no matter what lies ahead, she will never be alone. In that same way, we feel incredibly fortunate, that no matter what the future may bring, we will not find ourselves in a truely needy position. While most of Kristin's interactions here at Barnes have been with the doctors, nurses, and medical staff, I routinely interact with other family members and caregivers. It seems like every day that I meet someone who is in the same or similar situation where I hear about concerns and stresses that don't even cross our minds. Krstin and I have both been retired for a few years, so we will never miss work or have to wonder where our paycheck is coming from while receiving treatments. Kristin has good medical insurance, and we even have some additional insurance on top of that, so while cancer may get expensive, the bulk of it should be covered. We have multiple forms of reliable transportation, so we will never stress about the distance to her appointments or where to stay when out of town for treatment. The bottom line is that cancer will never cost us our home or take away our ability to provide for ourselves. 

Unfortunatly, that is not the case for so many families battling this relentless disease. I have met people who are geniunily concerned about how they are going to pay for parking let alone knowing where the next mortgage payment is coming from. I see people everyday counting their change in the cafeteria for an order of fries, or having to ask if they have enough left on their food coupon for an apple. I've watched a family jump through hoops to do a directed blood donation, not because they wanted to, but because the 2 units of life saving blood his mother-in-law needed were just to expensive. His jaw dropped when I told him Kristin had needed 18 units of blood. I see family members sleeping on chairs in the visiting room not because they have to be there, but because they can't afford a hotel. I really can't tell you how many times I have broke down crying in my car, not about our situation, but about that of some random stranger I just met in the elevator. The hospital has a family lounge that has become my home away from home and a temporary respite for Kristin. The 2nd floor lounge has taught us that the little things make the biggest difference, so Kristin and I have decided that this is how we are going to use the proceeds from the Kristin's Crew campaign. Recently I sat down with the director of the center to express our appreciation and to determine how we could help. While the vast majority of resources available in the family lounge are provided by the hospital, we were able to find some needs. The lounge has a supply of board games and adult activity books that is always in need of replinishment. Additionally, while there is a kitchen area to prepare and eat a meal, care givers are often looking for a quick microwavble food item to hold them over. The lounge staff also mentioned that food from outside the hospital is always a hit, remarking that they were still talking about the Hot Box cookies that I had set out during Kristin's last stay. I'm planning on picking up a couple dozen Einstein's Bagels and a supply of fresh fruit from Whole Foods to set out tomorrow morning. 

So with all that being said. If you think this a good use of money, then click on the link below and join Kristin's Crew. Future campaigns will include a wider selection of items as well as long sleeve and hoodie options. Those not wanting to place an online order can contact me directly via FB or Text (870-421-0131) and I will make sure you get a shirt. 
 
https://www.bonfire.com/kristins-crew-campaign/

After an enjoyable week at home, we have now returned to Barnes Jewish Hospital in St. Louis to begin the Consolidation Phase of Kristin's AML treatment. During her previous 31 day hospital stay, Kristin successfully completed the Induction Phase of treatment. She responded very well to the initial chemotherapy treatments, and her bone marrow is now producing normal blood cells. However, to ensure that she remains cancer free, she will need additional treatment. Yesterday marked Day+1 of a 28-35 day cycle that Krisitn will need to complete a total of 4 times in order to ensure that she remains in a remission cycle.

At the beginning of each cycle, Kristin will be an inpatient here at Barnes for 5-6 days. During her stay, she will undergo 6 rounds of HiDac Chemotherapy.  Each round lasts about 3 hours, where she receives an extremely high dose of the chemotherapy drug Cytarabine via her IV port. This is the same chemo drug that she received during the 7+3 portion of her Induction treatment, but at much higher doses and over a shorter period of time. On Day+6, if there are no complications, she should get to come home. Day+8 begins a 14 day course of treatment for her FLT3 mutation, without which the chemotherapy would likely be ineffective. This is an obsenely expensive oral medication that has only been FDA approved since April 2017, that she will take twice a day. Additionally, during this time frame, she will need to go to the Peitz Cancer Center in Mountain Home every few days for blood work, misc. IV medications, and blood product transfusions. Just like her previous treatment, she will likely need multiple transfusions of both blood and platlets. On Day+21 she will complete her course of treatment and have 1-2 weeks to rest and recover before returning to Barnes to start the cycle over again. The goal of the 4 rounds of Consolidation Phase treatment is to keep the AML in remission for an extended period of time. If her AML does not respond to the chemotherapy, then the next step will be a Hematopoietic Cell Transplantation (HCT) transplant.

With Kristin home from the hospital, we have had some time to relax and recharge. Kristin is defiantly enjoying being able to kick back in her recliner, if only for a short time. We will be returning to Barnes Jewish Hospital in St. Louis next week to begin the next phase of treatment. The initial Consolidation Phase treatment plan will involve an additional course of chemotherapy. During a 5-7 day stay, she will receive 30 rounds of chemotherapy, or 6 doses per day over a 5-day period. Upon completion, unlike her previous chemo protocol, she will continue her treatment and recovery at home. This will include a 14-day course of oral chemotherapy support medication for her FLT3 mutation, as well as, regular trips to Mountain Home for lab work and blood products. If all goes as planned, we should be home in time for Christmas.

Tomorrow marks one month since Kristin headed to Mountain Home for a follow-up with her doctor, with nothing more than a common cold. I can't even begin to explain just how difficult the last 30 days have been since Kristin received her AML diagnosis. That being said, today was a big day. Kristin's bone marrow has returned to full function following the chemo, and her various blood count numbers are returning to the normal range. She has been removed from all the various IV medications she was on due to her reduced immunity. Tomorrow afternoon, she will undergo another bone marrow biopsy and then she will be ready to be released. Yep, you read that right. Kristin will be released from the hospital tomorrow evening (Tuesday morning at the latest). Tomorrows biopsy marks the successful completion of the Induction Phase of Kristin's AML treatment. As I am sitting here this evening, I can't help but reflect on everything Kristin has been through in just one short month. Since leaving home a month ago for a quick trip to town, Kristin has:

Spent 6 hours in an Emergency Room
Took a 250 mile road trip in an Ambulance
Underwent 168 hours of Continuous IV chemothreapy, that's 7 days with not a minute missed!
Plus 3 Additional rounds of chemotherapy concurrent with the 24/7 routine
28 doses of oral chemotherapy to treat her FLT3 mutation
3 painful Bone Marrow Biopsy procedures
Blood Transfusions totalling 18 units of blood
Platlet transfusions totalling 8 units of platlets
96 doses of IV Antibiotics
21 doses of IV Anti-fungal medication
Around 200 Injections for one thing or another
Several hundred blood sugar pin pricks
About 150 Insulin injections
Countless doses of various medications
Approximately 12000 Labratory tests (Seriously, they do about 400 per day)
She's even had her temperature taken and blood pressure checked nearly 500 times
Talked with her ocologists around 70 or so different times
Had a consult with just about every other speciality doctor in the hospital. Seriously, she had some sinus pressure one day and it resulted in 4 different ENT doctors popping by to look up her nose.
Had no less that 20 different nurses ask her about her bowel movements at least a dozen times a day. (pretty sure there is a special class in nursing school called, Poop 101)
She hasn't went more than 2 hours without being poked or prodded for something since she arrived.

In case you didn't know it already, Kristin is one heck of a woman to be able to endure all this and still have a smile on her face.

While we will be coming home in the next couple days, it will only be for a short period of time. Kristin will need to return her to Barnes in just a few weeks to begin the Consolidation Phase of her treatment. This phase of her treatment will include additional rounds of inpatient chemotherapy as well as additional treatment for her FLT3 mutation. They will also continue to complete the needed genetic testing to determine her suitability and risk factors for a potential Hematopoietic Cell Transplantation (HCT) Transplant at some point in the future.    

Kristin completed her first round of treatment on Tuesday night. She has held up amazingly well during the past 21 days of chemotherapy, and is on track for release sometime late next week. Her bone marrow is already starting to recover from the chemo. Her platlet count has increased significantly during the past few days, and is now in the normal range. It's starting to look like the days of blood trasfusions are behind her for now. We are now waiting for her ANC (Absolute Neutrophil Count) to increase to >1000. Her ANC dropped to zero on the 2nd day of chemo, and has remained there until this morning when it was measured at 100. Woo Hoo!   What Does This Mean? The increasing platlet number, and non zero ANC is an indication that Kristin's bone marrow has resumed cell production. To put it simply, the chemo knocked out her bone marrow, and it is just starting to wake up. In addition to a reduced need for blood products, the increasing numbers will also mean that Krisitn's immune system will resume functioning, allowing the doctors to take her off many of the support medications she is currently receiving. After her ANC has recovered to at least 1000, she will undergo her 3rd bone marrow biopsy procedure to help determine exactly what her consolidation plan (next steps) will look like. Once the biopsy has been completed, and her blood counts are stable and in the normal range with no support medication, she will be sent home.   

Along with all the excitment and messages of support, there have been quite a few questions since we posted about the results of Kristin's most recent bone marrow biopsy. Before I attempt to answers everyone's questions, I'd like to thank everyone who has messaged me directly and remind everyone else (including her family members) to please refer all questions to me. We are asking that you not message Kristin anything that ends in a question mark. If you don't have my phone number, you can contact me on FB or via this page. Do not hesitate to contact me with any and all questions you have. I know that there are a bunch of people out there who care about Kristin as much as I do, and I consider it not only my responsibility but my honor to keep everyone up to date. The big question being asked since Kristin received the very positive news that there were no lukemia blast cells in her bone marrow has been; Does this mean she is in remission? In short, the answer is no. The lack of lukemia blast cells in her bone marrow, at this point, is only a indication that the chemotherapy was effective, and more importantly, that she doesn't have to jump right back into another round of chemo. Another popular line of questions has revolved around what needs to happen before Kristin can come home. Krsitin is still receiving treatment for the FLT3 mutation. This will contine until the middle of next week. After that, it will take her body some time to recover. Approximatly a week after she finishes her treatment, her bone marrow should start to produce cells on it own, and her blood counts will start increasing. Specifically, they will be watching her ANC or Absolute Neutrophil Count. Once her counts return to normal, and she has been removed from all the support medications, she will be ready for release. The next obvious question is; How will they determine if she is in remission? After her counts return to normal, but prior to her release, Kristin will undergo a 3rd bone marrow biopsy. Each of these procedures has provided vital information, and her 3rd will be the most crucial. The 1st biopsy was used to verify her diagnosis, it showed that approximatly 13% of the cells in her marrow were mutated lukemia cells. The 2nd test, which was completed last week, showed that all of those mutated cells had been eliminated. As her bone marrow recovers from the chemo and begins to produce new cells, they will need to preform a 3rd bone marrow biopsy, approximatly two weeks after the last one, to determine if any of the new cells being created are those pesky mutated lukemia blast cells. The lack of lukemia blast cells in this biopsy will be a strong indication that she is in remission. A poor result would likely result in a extended hospital stay, additional treatment, and possibly movement down the path towards a Hematopoietic Cell Transplantation (HCT) transplant. There have also been tons of questions about the quantity and frequency of the blood transfusions that Kristin has been receiving. Thus far she has received 8 units of platlets and 16 units of blood. While this may seem like alot of blood products, it is important to remember that AML is a cancer of the blood or more specifically where the blood is made. Initially, the transfusions were necessary because her bone marrow was producing mutated and ineffective blood cells. The course of chemotherapy that she underwent was directed specifically at the source of the mutated cells, her bone marrow. Chemotherapy is not a discerning treatment, meaning that it attacks both the mutated cells and the healthy ones. So at this point, it is due to the chemo, not the lukemia, that she continues to need blood products. This will continue until her bone marrow has a chance to recover and resume cell production. So for the next couple weeks, she will continue to receive platlets and blood regularly as indicated by her daily lab results.

The last question is one that we can't fully answer right now. Absolutly everyone, including us, wants to know what is next for Kristin. Right now we know very little about what Kristin's "Consolidation Plan" will look like. About the only thing set in stone at this point, is that she will continue the treatment for her FLT3 mutation during her first 2 weeks after release as well as periodic booster treatments to keep it under control. Some form of outpatient treatment is a certainty. A Hematopoietic Cell Transplantation (HCT) transplant is a possibility, but we are quite a few steps from that path. Additional rounds chemotherapy are also a real possibility, but at this point we are focussed on what is right in front of us.

Finally, I just want to say how touched I have been to here from everyone. It warms my heart to know how many people are out there wishing Kristin the best. As her husband, my goal has been to make sure she never feels like she's alone. All of your support makes that job much easier. Thank you so much!

When I woke up this morning, I'll be honest in saying that I wasn't looking forward to spending Thanksgiving here at the hospital. Kristin's day started off with yet another unit of platlets, a morning course of IV antibiotics, a couple different types of nausea medication, followed by the morning dose of her oral chemotherapy treating her FLT3 mutation. In other words, the day was shaping up to pretty much suck. Needing a change of scenery, we made plans to explore the hospital as soon as she was disconnected. Before we had a chance to get out of the room, Kristin's doctor came by on her daily rounds. With most of the hospital in a holiday routine, we were not expecting any news beyond the regular daily discussion. However, that was not the case. As you know from my last update, Kristin underwent a bone marrow biopsy procedure on Tuesday. While there are still more results pending, we did get an unexpected and very significant result.

NO LUKEMIA BLAST CELLS PRESENT IN KRISTIN'S BONE MARROW !!!

What this means for Kristin is that she will NOT need an additional course of chemotherapy during this hospital stay. The pending results will not change this outcome, as they are primarily used to help determine her consolidation plan (future treatment plan). She still has to complete the treatment for her FLT3 mutation which will continue for the next 6 days. After that, her bone marrow will begin to produce new cells and she will be on the road to release. After her blood counts are moving towards the normal range, they will take her off the anti-viral and anti-biotics and monitor her for a few more days. If her counts continue to improve, she can expect be home by around December 11-14. How's that for something to be thankful for on Thanksgiving! and as promised, I've attached a photo of Kristin rocking her new hairdo excited to see the light at the end of the tunnel.

Since we arrived here in St. Louis earlier this month, the most common non medical related questions I have been asked, have been in regards to my (and Kristin's family) accomodations during the extended stay. Can you sleep in the room with her? Where is her daughter/mom/sister staying when they come up? Is the hospital in a bad neighborhood? In addition to answering these and other related questions, I want to use this post to explain to everyone our experience with the Open Homes program, to explain why we will be supporting The Bone Marrow & Cancer Foundation & the AirBnB Open Homes Medical Stays program, and to ask you to do the same. While there is a fold out sofa in her room, I didn't feel like I would be any good to Kristin if I didn't have a decent bed to sleep in, so I have been staying at a no frills hotel a few miles from the hospital. They offered a hospital rate, so it was decent enough for me. However, when her Mother/Daughter/Sister came out to relieve me for a couple days, they stayed in a hotel connected to the hospital which was very convient but pretty pricy. With three more weeks at best still ahead of us, this was going to become increasingly complicated and costly. However, that all changed when I called the great people at the Bone Marrow & Cancer Foundation. I didn't make contact with them for the purposes of housing. They were just on a list of support organizations that the hospital social worker reccommended we make contact with. After telling me about the organization and the services that they will be able to provide for Kristin, they asked me where I was staying during her treatment. I was then encouraged to submit an application for a program called Open Homes Medical Stays. After completing our portion of the application, I turned it over to Kristin's Social Worker/Nurse who filled in the hospitals portion and faxed it off. The next day I recevied an email from the BMCF telling me that we had been approved for the progam. Shortly thereafter, I received an email "Invitation" from AirBnB. There I was able to book a beautiful 1 bedroom apartment just 2 blocks from the hospital at absolutly zero cost to us. The apartment is in a doorman building located above a Whole Foods, it has a gated parking garage, and key carded access to a residents only elevator. Immediately after completing the reservation, I was contacted by the AirBnB host who offered to make the unit availavle at 10 a.m. on the day of check in. It was all so easy, that I was just waiting for the other shoe to drop. I was convinced there had to be a catch as none of it seemed real or realistic. Why in the world would an organization that I had never heard of 2 weeks ago, and have never donated a single penny to, move so fast to make sure our needs were met? It wasn't until I walked into the apartment on Sunday morning that I realized the difference between a room and a retreat, and how much it meant to me to have the latter rather than the former. I could see the relief in Kristin's face when I explained that her Mother, Daughter, & Sister would have a safe place to stay when they come back up to fill in. So to put it simply: Please do not let this program run out of money!

I set up a Giving Tuesday fundraiser on Facebook for the Bone Marrow & Cancer Foundation. This coming Tuesday, December 3rd  Facebook will be matching donations. We would ask you to consider making a donation to an organization that is making a difference in the lives of both the patient and their family. In addition, you can donate directly to the AirBnB Open Homes program in a variety of ways. This program is not just available through the Bone Marrow BMCF. AirBnB partners with nearly a dozen other support organizations to provide temoprary housing for extended medical stays, natural disasters, and refugee settlement. Visit https://www.airbnb.com/openhomes/donations to learn how you can help those in need of this program.