Tomorrow, Saturday October 10th, 2020, Edwin’s father is hosting a memorial service in honor of Edwin for friends and family who live in California and were not able to join us in person for his funeral in Kansas City. The event is at 11:00 A.M. Pacific Time which is 1:00 P.M. in Kansas City (Central Time). His family has invited anyone interested in participating in the service virtually to join them at the following zoom link tomorrow: https://zoom.us/j/91731815293.
Again,
Thank you for everyone who has sent love, support, condolences, and helped myself and our family as we’ve been celebrating Edwin’s life and grieving.
I want make sure everyone is aware that Edwin’s funeral tomorrow, October 1, 2020, at 10:00 A.M. will be live streamed on the funeral home’s Facebook page. Please see the below paragraph that Assurance added to Ed’s obituary in regards to viewing the service virtually.
The live stream will start as soon as the eulogy begins, Thursday, October 1st, at around 9:50 am. The live stream will not show up until we start recording. If you don’t see the video from the link around 9:50 am you may have to refresh the page until it shows up.
Please keep in mind that the funeral is open to people to come in person at St. Elizabeth’s Catholic Church. Masks are required and social distancing will be in place. We have a cap of 100 people allowed to attend. There will be no formal reception following the funeral due to COVID restrictions. Thank you for everyone’s kind words and tributes to Edwin over the last week. Your prayers and support to our family is much appreciated.
Edwin Allan Huntington (A.K.A Ed or Eddie) passed away on the early afternoon of September 20th, 2020 at the age of twenty five. Edwin was born on August 22, 1995 in Southern California. He grew up in the Altadena, CA area. At age fifteen Edwin came out to Kansas City, MO where he chose to settle and call home for his teenage and adult life. Edwin graduated high school from Southwest Early College Campus High School with an associates of arts degree from Midwest Community College in 2013. Edwin was a devoted employee at the Legoland and Sea Life Discovery Center with his final role there being an Admissions Manager.
Eddie was a kind, loving, and generous person who brought magic everywhere he went. At heart, he was truly a big kid. The accomplishments he’d probably tell you were his biggest in life was becoming an Eagle Scout with the Boy Scouts of America, making it into a full time manager position at Legoland, finding God and becoming Catholic as an adult, and marrying his wife, Megan. Edwin loved dogs. He was a very happy dog dad to him and Megan’s rescued dog Lucke. Edwin’s dream in life was to become a loving father and to open a magic shop where he could teach children leadership and public speaking skills through the art of magic. He loved being a part of a community and helped anyone in need. He was a thoughtful, playful, and loyal friend, husband, brother, and son.
In May of 2020, Edwin was diagnosed with Acute Lymphoblastic Leukemia. He went through treatment at both St. Luke’s Hospital and The University of Kansas Hospital in the Kansas City area. Edwin was a brave, strong, and light hearted patient. He did not let his cancer bring him down or prevent him from achieving the goals of becoming Catholic or getting married. Edwin brought laughter and love to his entire medical team. He was beyond thankful for the opportunity to receive a bone marrow transplant on September 4th, 2020 in which his half sister, Allison Lewis, was his bone marrow donor. Edwin’s battle with cancer truly exemplified his ability to remain calm, cool, and collected during the most difficult times, as well as being a perfect example of someone who remained thankful and positive during times where it felt the most easiest to wallow in self pity, anger, or fear.
Edwin was an accepting man who valued everyone for who they were no matter what walk of life he met them in. He blessed the lives of all who met him. Though he has physically left this world, there will be pieces of his spirit that will live on in all who had a relationship with him. He is survived by all of his dear friends, especially his work family at Legoland and Sealife, his wife Megan Dux Huntington, his brother and sister Elijah Huntington and Allison Lewis, his parents Darrel Huntington and Iscela Donohoe Huntington, as well as grandparents and several aunts, uncles, and cousins.
Edwin’s primary funeral service will be held on Thursday October 1, 2020 at 10:00 A.M. at St. Elizabeth’s Catholic Church (2 E. 75th St. Kansas City, MO 64114).
Formal listing of obituary: https://www.fhwebsites.net/asy/notices/EdwinEddie-Huntington
Edwin and Megan on their wedding day August 3, 2020 Edwin and Lucke April 2020 Edwin, Megan, and Lucke on Adoption Day October, 2019 Megan and Edwin on their fourth date June, 2018 Edwin’s 10th Birthday in August, 2005Edwin as a Boy Scout in 2008
Edwin has had a rough several days. He’s fighting very extreme fatigue and the doctors are concerned about his liver being under stress. Ed’s liver enzymes have been increasing since around Monday and are currently out of a normal range. He’s received two ultrasounds of the liver and each show that the liver is under stress due to fluid build. This could be caused by two things. The first being that Ed’s liver enzymes are up because he’s retaining a lot of fluid and having difficulty urinating. However, it also could be caused by what is known as V.O.D a previously mentioned liver condition that can be a serious side effect of the chemotherapy he received that put him into remission. At this time his doctors are not diagnosing Ed with V.O.D because his bilirubin levels remain within the standard range as well as the fact that Ed has been having issues with retaining fluid and urinating. Due to this, his doctors have gotten some kidney specialists involved and are monitoring functions of both the liver and kidneys closely.
He was placed on medications known as lasix which help you urinate a lot to get rid of fluid build up caused by the excess fluids they give you when you receive as much medications as you do in the hospital. Over the weekend, the lasix did help Ed go to the bathroom more frequently and reduced swelling in his ankles. However, around Sunday or Monday Ed stopped urinating a normal amount and was urinating blood. Today his doctors have decided that he’s no longer responding to the lasix so they placed him on a different medication this afternoon that works like the lasix but is stronger. He was also examined by their kidney specialists. There is currently no other medication they can give him safely to help him pass fluids because the others put you at a risk of bleeding. Since Ed’s blood counts are all below normal due to the chemo, radiation, and transplant Edwin is naturally at a high risk of bleeding and they cannot push that risk any further with a different drug.
Ed’s doctor’s are still confident that this is something that is treatable and can be treated by this different medicine and him consuming more liquids to help him urinate. If this mediation does not help Ed pass more fluids, in rare occasions they’ve needed do dialysis to help patients pass fluids. However, they’re hoping that it will not go in that direction. Ed’s doctor said that these concerns for the liver and kidney functions are serious but they do feel that they are treatable. They’re just monitoring him extremely close since this is so serious and when your liver and kidneys are stressed or not functioning properly things like your heart rate can go up which can be be bad. Ed’s heart rate has been jumping up and down recently probably due to pain and stress. He’s getting an EKG tonight or tomorrow morning to make sure things are functioning normally. His heart is sounding healthy. Liver and kidney functioning are the doctors’ largest concern at this time. Ed is in pain, he’s bloated, and he has been experiencing painful mouth, throat, and esophagus sores. Those are all typical side effects from the chemo and radiation. They’ve been slowly getting better throughout this week but they’ve made it hard for Ed to eat or drink anything due to pain when swallowing. He’s not eating much at all and drinking is hard. Ed is loosing his hair again so the super thick stash he grew during his three weeks of remission has been thinning out. Again, this is normal. It will come back! Right now his head looks like a baby bird’s head with his new baby hairs that were coming in thinning out.
Eddie is not currently himself. So if anyone is trying to text, call, or talk to him right now don’t be offended if he doesn’t answer or seems a bit off. He’s been spending most of the last few days asleep and he’s in a lot of pain. His nurses told me that his liver enzymes being raised can also cause some cognitive issues where patients will not seem like themselves or find it hard to focus and have conversations. Please feel free to reach out to me if you’ve tried talking to Ed recently and he hasn’t been responding. We both think things will get better though and Ed will start being more perky at some point.
Thank you again for everyone’s continued support, help, prayers, and happy wishes. We wish everyone a good start to the fall season which is will hopefully start soon (I want the cooler weather again!).
Yesterday was Ed’s big day! He received his new cells from his sister in the afternoon around 12:45 P.M. There are pictures below of what it looks like to get a bone marrow transplant. Ed slept through a little bit of the infusion and in total it only took about an hour and a half for all the cells to work their way into Ed’s line. The hardest part of this process started hitting today. Patients are supposed to get a fever on day one of the recovery process and they maintain a fever until about day three. This fever is a side effect of the new cells figuring out what’s going on inside their new host. On day three Edwin will receive a type of chemotherapy that will help calm down the new cells so that they don’t destroy their host (Ed) in a life threatening manner. His fever should fade by day five when the chemo has had enough time to do it’s job. Days 5-15 will also be a struggle as Ed’s body will continue to feel the harsh side effects of the intense chemotherapy and radiation he had over the last week to prepare his body for his new cells. This is also when his new cells will begin their engraftment period meaning that they are learning their new host’s body and starting to grow and duplicate on their own in this new environment. During this time it is important that Edwin stay as active as humanly possible for him. Which on a bad day could simply mean sitting upright in his recliner and making sure he’s standing up to go to the bathroom and shower and on good days he’ll be walking his unit and spending time on an exercise bike or treadmill.
Currently Ed is dealing with the worst nausea he’s experienced thus far since his diagnosis. It is likely a side effect of the radiation he had which ended on Thursday of this week (9/3). He’s never had radiation and it has really taken a toll on his appetite and energy. He is still eating for the most part, today he’s struggling a little more though. Again this is totally normal and something the doctors expect. Edwin’s spirits are remaining good. Everything we’re seeing at this time is what is anticipated. This is a very life changing event to happen and it has a difficult recovery period. Essentially Edwin has lost his entire immune system in order to build a new one with his donor cells. He is very vulnerable to infection and disease and he will be physically weak as his body is going through a lot. He is also at risk for something called Graft Vs. Host Disease. This is when the new cells in a patient’s body create complications due to them fighting (and in some cases rejecting) their new host. Most side effects of Graft Vs. Host Disease can be treated if caught early and are not fatal. These factors are why transplants require such a long period of time in the hospital and for BMT patients the continued quarantine for a couple of months post their hospital stay.
For the first 100 days post transplant (so today and on ward) Edwin requires a 24/7 caregiver. He will not be able to go anywhere aside from the hospital, our home, and the cancer clinic during this time. He is not even permitted to go outside for walks or to sit on our porch for fresh air due to his lack of immune system. He will be released from the hospital when his new cells begin to show signs that they are creating healthy white blood cells on their own. When that starts showing up in his lab work if he is eating well and there are no other complications doctors will begin working on a discharge plan for him. This typically doesn’t happen until about two to three weeks post transplant. Once released from the hospital, Edwin will be going to the cancer clinic every day of the week for lab work and to receive blood products and other support medications as needed. Some patients have to be at the clinic daily for the whole 100 days, some patients are able to come more like 4-5 days a week as they near the end of the 100 days if things are going really well (that probably won’t be considered until we’re reaching day 75 or 80). Once Ed reaches day 100, he will receive a bone marrow biopsy to assure that he is still in remission. Sometime between day 100 and day 180 he will receive all the vaccinations you get as a child again because he lost all of his immunity towards those diseases as part of the transplant process. Ed will then receive a biopsy at day 180 and the one year mark. Following the one year mark he will have a yearly biopsy to assure he’s still in remission for the first five years post transplant. Overtime after day 100 his visits to the cancer clinic will begin to decrease from daily, to weekly, to monthly, and eventually be yearly.
This is only a rough outline of what recovery looks like for Edwin. Edwin is still staying strong and he’s eager to get through his 100 days as smoothly as possible. They very much prepared us leading up to the transplant that 100 days is a long time to be on such a high alert and cut off from much of the world outside of our home and the doctor’s office. There will be some very difficult days coming up where physically and/or mentally Ed will not feel good, which is totally normal. These are all preventative matters that would be in place with or without the COVID-19 pandemic. COVID adds additional stress to us both because it requires me to be much more cautious and socially distant/quarantined then I would have to be if things right now were “normal” in the world. It also restricts Ed from having more visitors when visiting would have already been limited in this situation and requires us to be strict with wearing masks and staying physically distant from visitors who may come to our home when Ed is released. Without COVID visitors would not normally need to wear a mask in our home and I wouldn’t have to limit physical contact with people as strictly as we do now. Without COVID it was mostly patients that wore masks when going outside their home and with visitors due their lack of a mature immune system.
Ed continues to keep his brave face on and positive spirit. We both really do want to say thank you for the continued prayers, warm wishes, and support. Thank you for those of you who read our blog to stay updated. We will continue to do our best to post about Ed’s progress as much as possible. Please do not hesitate to reach out if you have a question.
This is what the donor cells look like. Ed officially hooked into his transplant and starting to get his new cells!
Edwin is still currently in remission! He is in the final countdown days before his bone marrow transplant (day zero). The last week and a half have been chuck full of labs, imagining, doctor appointments, and classes to assure that Edwin’s body is able to handle the transplant and that both Ed and myself know what to expect from it. The good news is that Ed’s tests all check out great in terms of receiving a transplant. His sister who lives in Kansas City is currently selected as his transplant donor. We are waiting for one more round of her labs to come back before making it final, however at this time all of the labs they’ve received from her show that she is a healthy and suitable match. We should know by tomorrow afternoon if the last round of tests show anything to contradict this choice causing us to put a pause on the transplant in order to locate a new donor.
Edwin had his big “consent consultation” today where the doctor and transplant coordinator went over with us the chemotherapy and radiation he will be receiving seven days leading up to his transplant, the transplant itself, and the recovery process following the transplant. This included going over all of the risks and side effects of each procedure. Edwin will be admitted to the hospital this Friday (August 28th, 2020) early in the morning. He will begin his pre-transplant treatment that day which consists of three days of very heavy doses of chemotherapy followed by four days of radiation. Edwin is scheduled to receive his new cells on September 4th, 2020. The transplant itself feels slightly underwhelming when it occurs in the sense that there’s no big elaborate procedure they perform to give Ed his cells. He will receive his new cells through his trifusion line very similar to a blood transfusion. He’ll most likely sleep through most of it because they give him several medications prior to the transplant.
If anyone would like more detailed information about what a bone marrow transplant is or what recovery is like we have included a link to the “Be the Match” website, specifically the page discussing transplants. This page includes several videos that they showed us in our class about transplants and the site as a whole has a lot of resources to help understand what we’re going through. There’s a lot of information we could include with a lot of statistics, big names of side effects that could occur, and gruesome details of what this process will be like. However, to save us from writing a fifteen page blog post we feel this site is a good substitute. Please feel free to leave a comment or reach out to me if you have a specific question.
We’re so happy Ed had a nice 25th birthday this past Saturday (August 22, 2020) and beyond thankful that for his birthday he’s receiving this gift of a hopefully what will be a long and happy life. Words can’t express how blessed and thankful we feel that his sister is a transplant match and that we live so close to KU and a strong support system. Recovery will not be a short nor easy process, but we know in the end this will all be worth it.
August has been a good month so far and things will hopefully continue that way as Ed heads into the week before his birthday on August 22. Ed and I got married at St. Elizabeth’s Church on the evening of Monday August 3rd, 2020. We had ten guests at the wedding. However, when our ceremony was over and we were heading out to leave we were surprised by the RCIA class that Ed was in this year. They had gathered in the parking lot to surprise us with just married signs, cow bells, a balloon bouquet, and cake! We were stunned and enjoyed it! We’re so thankful for all the people that helped make our wedding a special day and worked behind the scenes with us (and without us) to make sure that our plan to not plan our wedding went beautifully. We have included pictures below!
Ed finished his first cycle of the new treatment (Inotuzonamb) last Wednesday. We have been holding off posting again because we wanted to receive the results of Ed’s bone marrow biopsy that he had this Tuesday first. Today we received some great news. Ed is in remission! This means that starting tomorrow we’re hitting the ground running with KU to prepare Ed and myself for his bone marrow transplant and recovery. We also have learned that Ed’s sister who lives in KC is a half match and has been selected as his bone marrow donor! His sister is a half sister and so her being a half match is really fantastic because there was only a 50% chance of her being a match at all. We are still waiting for results from Edwin’s brother’s test because he and his brother have the same mom and dad and there is a 25% that his brother could be a perfect match. The doctors do not want to wait on results from Edwin’s brother (who lives out of state) before they start preparing for the transplant. That is why they’re currently selecting his sister as a donor and if we learn that his brother is a perfect match it would not be hard to switch donors.
Ed still has a lot left on this journey to recovery but remission was the first major milestone that needed to be achieved before heading into the next phase of healing. The bone marrow transplant will require about a week and a half to two weeks of vigorous out patient exams, testing, and it sounds like a class or two on what to expect from all of this. Ed will then go into inpatient where he will receive a very heavy amount of chemotherapy and some radiation to essentially kill off any remaining bone marrow and cells in his body to prepare him for the new bone marrow from the transplant. He’ll remain in the hospital for a few weeks after the transplant to make sure that it was initially successful. Following his in patient stay, it is looking like Ed will require some form of 24 hour supervision and care for roughly 100 days. So please continue to send prayers and good vibes not only for Eddie’s strength and health but also that of all the doctors, nurses, and caregivers who are working with him are able to stay safe and healthy themselves in order to provide him with the best care possible. We have a lot of questions we need to write down and information to receive in the next few weeks as we prepare for Ed’s transplant and his in and out patient care. We will continue to do our best at keeping everyone updated on the site!
Edwin was able to be discharged from the hospital this week on Tuesday, July 28th, 2020. Hopefully this will be his last in patient stay until he’s in remission and it’s time for him to receive his bone marrow transplant. The type of chemotherapy he is currently getting should ideally all be done in outpatient and the only cause for going back into the hospital would be if Ed got ill or started to experience severe side effects from all the medications he is on. He had his second dose of the Inotuzumab (the type of chemo he’s on) for cycle one yesterday. Today has been an uneventful day which is good, because last week the day following treatment Ed went back into the hospital. Ed’s numbers have improved since receiving the first dose of Inotuzumab. The percentage of blasts in his blood have dropped significantly. We will not know until his bone marrow biopsy how successful this first cycle of treatment has been, but the fact that his blood work is showing the numbers of cancerous cells go down is a good sign that something is working. The bone marrow biopsy will not occur until about day 21 of this cycle. Today is day 9. It will be completely normal if Ed gets to the end of this first cycle and is not in remission. Some patients have up to six cycles of this treatment prior to reaching remission.
Our goal for this weekend is to stay positive and for Ed to not spike any more fevers as we plan to get married the evening of Monday, August 3rd, 2020! Ed is scheduled to be in clinic every single day for lab work and vital checks to make sure that his numbers are stable and if he needs something like a blood transfusion or platelet transfusion he can easily get one there. So far the things they look out for that would be signs of serious side effects such as liver, kidney, or heart failure have all looked good.
We may be able to live stream our wedding, however, we’re still working out the details of that. Either way, we will be filming it and will be sure to post a link to it on the blog next week. Please continue to pray and send positive thoughts our way as we are truly hoping things remain calm and that our wedding can occur. Thank you for everyone’s help and support.
Ed was able to be released from inpatient care at KU Medical Center on Monday, July 20th, 2020. Since this time we have begun his newest treatment plan. Edwin is not able to receive the previously mentioned CAR-T Cell Therapy that KU offers as it targets the specific leukemia marker called CD-19. Ed’s biopsy currently shows that he has 0% of this marker both in his blood on on his bone/in his bone marrow. He primarily has the marker CD-22. There is a CD-22 CAR-T Cell Therapy, however, it is still in its first trial of testing and not available in our part of the country. At this time, it is safer and more ideal for Edwin to move forward with a targeted type of chemotherapy called Inotuzumab. Ideally this chemotherapy will be able to take Ed into remission where he will then receive a bone marrow transplant.
Ed began the Inotuzumab Chemo Therapy yesterday (7/22/2020). Unfortunately, the amount of cancer in his body was at a slightly higher level then what is desired to begin this type of chemo because this is a pretty heavy chemo that is target specifically to Edwin’s type of cancer. The amount of cancer in his body had crawled back up to about 74% and his unhealthy white blood cell count went up greatly between Monday and Tuesday. When this happens doctors often give patients lighter forms of chemo over the course of about five to seven days in an attempt to lower their numbers prior to hitting them with something as specific and as heavy as the Inotuzumab. However, because Edwin has already had two rounds of chemotherapy like this in inpatient and it did not show much success, the doctors feared if they went this rout, Edwin’s body would not respond to the lighter forms of chemo allowing his numbers to creep up even more, wasting valuable time before giving him the Inotuzumab. Therefore, they chose to go ahead with this chemotherapy yesterday. With his numbers as high as they were there Ed was at a higher risk of having severe side effects as the chemotherapy kicks in and does its job leading to another inpatient stay. This is exactly what happened this morning when Edwin spiked a fever of 100.5 and developed intense muscle pain.
Luckily, Edwin’s labs today showed that the two numbers they are most worried about, his potassium and uric acid levels, are in a good range. The chemo most defiantly knocked down Edwin’s white blood cell and blast counts significantly (meaning it is doing its job). All of his other lab work is what is to be expected from someone in his condition. He did however have one secretion marker that was at a slightly elevated level which could mean he is at risk of having his uric acid and potassium levels rise leading to kidney and heart failure. Due to this risk, and the fact that Ed grew a fever and strong pain over the course of this morning, doctors would like to see him in inpatient so that they can treat him immediately if things escalate. Since he has a fever, they have also done lots of blood work to rule out any type of infection. However, this is most likely simply a reaction to the chemo. The doctors are anticipating his fever going down soon and that he will hopefully be out within 48-72 hours so long as all his blood cultures are free of infection and his fever drops.
Inotuzumab is a chemo therapy typically given for several cycles in out patient. Each cycle lasts for about 21 days. Patients receive infusions on day 1, 8, and 15 of each cycle. A bone marrow biopsy is taken around day 21 to determine if the chemo has put the patient into remission. Patients can receive up to six cycles worth of this chemo therapy before going into remission. Sometimes a patient goes into remission as soon as the first cycle is over. Once the patient is in remission the goal is to receive a bone marrow transplant as soon as possible. Patients will receive chemo up until the bone marrow transplant to make sure that the cancer does not come back and to leave room for the new bone marrow to come in and do its job. The doctors have said that the first dose given on the first day of this treatment is typically the highest dose. Therefore, once Edwin gets out of the woods this first week, the following infusions should go smoother and his body should be more adjusted to it. Everything should be outpatient until the bone marrow transplant comes. There is one side effect to the Inotuzumab that is unique compared to other chemo therapies and that is something known as VOD (Vein Obstruction Disease). VOD is when the chemo therapy causes a vein in the liver that allows blood and other secretions to go out to be blocked. This can cause liver inflammation and other liver issues and at its most serious rate it can cause liver failure which can be fatal. VOD is a rare side effect and if caught early can be easily treated. Edwin is on a medication to help prevent VOD. Due to the fact that Ed has a history of liver inflammation caused by fatty liver the doctors are monitoring his liver numbers extra closely to make sure that they are on top of this side effect. If he shows no signs of issues within the first 15 days of this treatment that is a good sign that VOD will not be an issue for him. Due to the nature of Ed’s cancer at this point and the type of chemo therapy he is on he will be going to KU’s outpatient cancer center every single day for some type of care and monitoring. Most of the time it will simply be for labs and we can hopefully be in and out within two hours. However, there will be some long days at the clinic.
We are truly impressed with KU’s Cancer Center and feel confident in the care that Edwin is getting. Edwin is ready to kick this cancer’s ass with this Inotuzumab and get his bone marrow transplant. He is fighting hard and has not given up. Edwin and I are hoping to get married within the next few weeks. We are doing as much planning as we can for a very small wedding hopefully sooner then later. When we do end up finding the right day we will do our best to find a way to live stream the ceremony. If we cannot live stream, we will do our best to film the ceremony and post it on this blog. We keep saying we’re planning while not planning to get married in the next week. It seems when we make specific plans for specific days right now things come up and go a little south. Therefore we’re leaving a lot of it to fate or God (whichever you believe in) and hoping for the best. It will happen when it is meant to happen. Thank you again for all the prayers, help, and support from everyone! We are truly thankful for it all and feel a lot of love. We will do our best to keep everyone updated on when Ed is once again out of the hospital and of course when our wedding does indeed happen.
Yesterday was a full day for Ed but it was a special one. Eddie decided he no longer wanted to wait to receive his sacraments of becoming Catholic and asked if he could receive them at St. Luke’s prior to moving to KU. Luckily, Fr. Greg (the priest from our parish St. Elizabeth’s) was available to come! The nurses at St. Luke’s allowed me to stay in Eddie’s room while Fr. Greg was there and gave Ed his sacraments. Below are links to videos of him being Baptized, Confirmed, receiving the Annotating of the Sick, and First Communion. His confirmation name is St.John Bosco. Eddie began the RCIA process in late August 2019 and was supposed to receive the sacraments at the Easter Vigil this year but due to COVID preventing in-person mass the celebration was rescheduled to June. Unfortunately, Edwin got sick and was hospitalized at the time of the alternative mass and missed being able to celebrate with his class. I was his sponsor throughout the RCIA process. Yesterday’s ceremony was a nice and peaceful morning to prepare for Edwin’s transfer to KU and the start of this new chapter in his recovery process. Welcome to the Church Eddie!
Eddie transferred to KU around 2:30 P.M. yesterday and we met one of the main doctors he will be working with. He also received a bone marrow biopsy and several more tests to determine still if he has an infection. One of the images they took on his lungs at St. Luke’s does show a sign of a fungal infection. However, since we live in the Midwest, most people have signs of past infections on their lungs due to the amount of mold and fungus in our area. They will be doing some more imaging and tests to determine if the markings on his lungs are from a new/current infection that is causing his fevers or if they’re old. If they are old, at this time, it still seems that the fevers could be caused by the leukemia that is still in his body. Edwin also received an MRI on his head in the middle of the night last night. He will be receiving a Lumbar Puncture today or tomorrow. They must determine how much cancer is still in Ed’s body and where it is located prior to starting a new treatment plan. St. Luke’s was never able to get a clear picture as to whether the cancer had moved to Edwin’s brain. therefore, that is why he got an MRI and will be receiving an LP. It is looking like the current plan for treatment will be the CAR-T Cell Therapy. We will go into more details about that treatment in further blog posts.
Edwin’s Initiation into the Church (July 17th, 2020):
Blessing for Anointing of the Sick Ed receiving the anointing oils on his hands.
The first link is Fr. blessing water for Ed’s baptism. I had to pause to readjust the camera so I could stand by Ed and also get him a towel so that he didn’t get too wet from the water being poured on him. The second link is the rest of the ceremony.
