Our son Bob, has been suffering with Non-Hodgkin lymphoma for two years now. He has endured three- three month chemo sessions but unfortunately they have not been successful in killing this horrendous disease. His next step is to undergo stem cell replacement. This will take place at the Medical University of South Carolina in Charleston. Fortunately his sister Betsy is a perfect match. This week (beginning May 15) Bob will go through a massive chemo session that over the course of the week will kill his stem cells thus killing his immune system. On Thursday Betsy will begin having her stem cells removed in preparation for Bob to receive them on Friday. Bob will be closely monitored to determine if his body accepts her stem cells. If successful, after several weeks his bone marrow will begin producing stem cells of the same nature as Betsy's. His blood type will be the same as hers and his immune system will have to begin to protect his body from what we would consider normal infections (colds, flu, infections, etc.). Once the stem cell replacement takes place, Bob will be released from the hospital (due to the high germ density in a hospital environment) and placed in an isolated hotel room for about 100 days. During this time he will need a full time care giver. I plan on being his care giver for the first three weeks as these are the most critical. We will then rotate week sessions between Linda, Betsy, Bob's wife Lisa, and possibly his sons Matt, Tyler, Jon, and other family members as they come available. Our granddaughter Olivia has volunteered to give up most of her summer and be here to provide any assistance we need. We deeply appreciate all the thoughts, prayers, and assistance everyone has provided. Please keep us in your prayers. I will continue to update this page as we move through this adventure. Please advise me (firstname.lastname@example.org) if you have any recommendations you would like to see.
Tuesday 5-17 Update: Bob had his third chemo seen today and so far is fairing well. His spirits are good and he has expressed many times his appreciation for all the prayers and thoughts coming his way . My granddaughter Olivia has posted the following today: I made a gofundme (donation page) for Uncle Bob in order to help with some of the expenses that he has during this period. Feel free to send this link out to any of your friends and any more family you'd like!
The link is:
GO FUND ME FOR BOB POWELL
Betsy is beginning to feel ill with the shots she is receiving in order to boost her stem cells in preparation for her stem cell removal to begin on Thursday. Mare as available.
Thursday May 19 Update - Betsy began her long (8 Hour) stem cell donation this morning. She apparently was in quite a bit of pain last night and didn't sleep much. If they can't extract the necessary number of stem cells today, she will continue her donation tomorrow. Bob starts a 7 hour chemo session this morning and that is designed to kill his stem cells. Very difficult day for all of us. Will try to update again tonight or tomorrow. Thank you everyone for all the outpouring of support.
Bob is shown with his mom, granddaughters (Olivia standing, Lyndse squatting) as he begins his final chemo treatment Before receiving Betsy's stem cells later today. The doctors are calling this his new birthday. Betsy is donating more stem cells today as they could not harvest enough yesterday. More later.
Friday night - the stem cell transplant is over. Bob feels good, Betsy is in a lot of pain but this process is now behind her. We know the next few weeks with Bob will be tough but your prayers and thoughts are helping us get through this. I will update more after I visit with him tomorrow.
Saturday May 21 - Bob was discharged today and we moved him into a two bedroom suite not far from the hospital. He has many visits to the hospital beginning Monday with most sessions lasting about 8 hours. He is in good spirits, says he is hurting a little more than yesterday but we know that will get worse before he gets better. Betsy is still quite sore but not as bad as yesterday. We were all able to go out to lunch today and that was great.
Monday May 23 - Bob had a good day yesterday, just a slight upset stomach. I took him in at 7:00 this morning for day one of a two day 8 hour chemo that should kill off the rest of his immune system. After his session tomorrow, they will monitor him daily to see if Betsy's stem cells have taken over of if his body is rejecting them. This will be a daily routine for at least two weeks and they told him to expect at least one transfusion as that is normal for what he is going through. He will be able to go outside if properly masked and they encourage him to walk when he can to begin to build his strength back up. People have been very generous in helping Bob meet his medical expenses by contributing to his "go Fund Me" web page located at GO FUND ME BOB POWELL
Tuesday May 24 - Bob went through his final post stem cell transplant today. This series of chemo is to help prevent host vs graft disease, a common and very severe disease. Eight hours of heavy duty chemos. It is really effecting him now in terms of all the undesirable side effects. His spirits are good but he is very tired and to be blunt, he is feeling really crappy. His next steps are daily monitoring of his vitals, blood analysis, and watching for Betsy's stem cells to start being reproduced in his own bone marrow. It is very difficult to watch Bob go through this. Please keep sending prayers.
Wednesday May 25 - Bob is doing really well today. He wanted to get out for a while so we went to Fort Moultrie and enjoyed a long walk. His blood work came bace with all vitals looking good but they are telling him that usually the sixth or seventh day is when he will really feel the effects of the transplant. We did get good news today....he has been accepted to the Hope Lodge in Charleston that is run by the American Cancer Society. That is like a Ronald McDonald house. We move in on Monday. He has to get the pic lines in his arm replaced tomorrow...not looking forward to that.
Thursday 5/26 - Bob had his pic lines replaced...a little sore tonight but his blood work came through good and generally speaking he is feeling good today. Unfortunately during yesterday's get out and walk everywhere, he lost his wallet. Not a good thing so he spent most of today doing the credit card thing as well as getting a replacement drivers license. BUT, the important thing is that he still is feeling good and he is in good spirits. The medical staff here at MUSC are outstanding and very caring.
Friday 5/27 - Bob was low on Magnesium so he spent several hours getting that fixed. We checked into the Hope Lodge a very beautiful facility. Do a google search for HOPE LODGE CHARLESTON, SC and it will give you a good idea where we will be staying for the duration. Bob's blood tests today show his white blood cell count is zero now so he no longer has an immune system. He has to be extremely cautious as he is very susceptible to any bad germs around him. Lisa is coming down tonight and I will go home until Monday. He feels good tonight and we just returned from a walk.
Tuesday May 31-Sorry for the few day delay. I was on break while Lisa came here to relieve me. Bob has really been feeling the effects of the chemo. His bones ache, he is nauseous and his tongue has been developing very sore sores. He and I just got back from about a mile walk as he is trying as hard as he can to beat this. We know that he will go through some tough weeks but his attitude remains great. He is tired of me nagging him to take his temp, take his pills, take it easy and sleep during the day if the fatigue is overwhelming. The staff at MUSC are great and very experienced at their jobs. This helps a lot. As you can imagine, they know us by name now. As I wrote earlier, the Hope House here in Charleston is FANTASTIC!! Here is what it look like from the outside.
Volunteers come in Monday through Thursday and provide dinner. The food is outstanding. Because he is now neutropenic, he has to go to the head of the line and get his food first and then eat in a separate area away from everyone. Due to the nature of all the guests here, the entire place is spotlessy clean and the full time and volunteer staff are top notch. More later.
Thursday June 2 - Bob had his PIC lines removed today...a big thing for him as the skin around it was extremely sore and irritated. His blood work came back better today a great sign. His immune system is still at zero so he still can't go out in crowds and needs to eat in isolation. We were able to go out for a walk (about 3.5 miles) and this seems to help relieve him of some of the anxieties he is feeling. We walked to Colonial Park on land set aside for this use in 1768. In the early 1800's the lake was dug and connected to the Ashley River, so it is a salt water tidal lake. Picture below.
If you care to send Bob a card, you can send it to: Bob Powell, Suite 13, % Charleston Hope Lodge, 269 Calhoun Street, Charleston, SC 29401
June 3 - Rough night last night. Bob had a very bad dizzy spell at dinner causing him to nearly faint and experienced a bad vomiting spell. Had to take him to ER where after three hours they got him somewhat stabilized. We returned to the lodge and after our visit with the oncologists this morning he has spent most of the day in bed. His numbers are continuing to improve daily so that is a very good sign. Hopefully I will be going home for the weekend so I may not be posting for a few days. Thank you all for your concern and prayers.
June 4 - Bob's blood work cam e back a little better today so no additional chemicals for his body needed today. His tongue is his biggest pain and makes him miserable. But his spirits and fight continues. Due to his tongue, eating is a big problem as well as getting his many pills down. Lisa should be here momentarily so this will be short. More when I return.
Tuesday June 7 - Bob had a really good day today. His blood work came back showing great improvement in his numbers. Long way to go but very positive signs. His tongue is improving daily as well as his dizziness becoming less frequent. He doesn't have to go in for blood work tomorrow because of this good progress.
June 8 - Bob having a tough day today. No energy and very nauseous. Eating very little but this is, unfortunately, a part of this whole process. We have a 0730 appointment tomorrow for his blood work and a meeting with his bone marrow transplant specialist. Again I want to thank everyone who has given us such great support. It is a very rough road and having so many people waiting in the wings to render assistance is amazing.
June 9 - Bob is doing better today. He was still nauseous this morning and still getting dizzy but after a load up on magnesium, he seems better. His numbers are still improving, a very positive sign. He doesn't need to get more blood work until Monday so that is another good sign. After next week, they should be able to conduct the necessary tests to determine if Betsy's stem cell replacement is working. All signs seem to indicate they are.
June 11 - Bob continues to improve today but still having severe dizzy spells and still nauseous but not as severe. I have been relieved as primary care giver for a week as Bob's son Jon will take over. As I communicate with him, I will update this page.
June 12-Bob reports that he is feeling really good today. We pray that will continue. He has meetings with his bone marrow transplant team tomorrow and I will update after we get the results.
June 14 - Bob had blood work yesterday...his magnesium was low so they boosted it up again. This seems like a normal occurrence although nobody has indicated this. The rest of his numbers continue to improve. He did not experience and dizzy spells or nauseousness yesterday so hopefully these episodes have passed.
June 16 - Bob met with his oncologist and his BMT specialist yesterday and they are both quite pleased with Bob's progress. His magnesium was once again low so they infused him again. BUT...they have now scheduled him for two visits a week from the 7 days a week he started with. We are anxiously awaiting the tests scheduled within the next week or so that will determine if Betsy's stem cells are taking over. His dizziness and nauseousness spells are also decreasing...GREAT!
June 17 - Bob had his blood work done this morning and it came through looking really good. He and his son Jon (shown in picture below) are going to continue to cool it regardless of the heat.
June 22 - Back down with Bob after Lisa and Jon "took the watch" for a while. Bob is really feeling the effects of all the treatments and medications. He tires easily but is eating good and trying to stay strong by walking a couple of miles a day. We wait until about 7:30 to walk after the heat of the day. His blood work is good and the stem cells have been sent off to a special lab to see if the transplant worked. We will find out in 10-12 days. Keep your fingers crossed and say a special prayer.
June 23 - Quiet day for Bob today. It was too hot to go outside plus he is still quite fatigued. We meet with the BMT people tomorrow morning for blood work and getting an update on his progress. Stay tuned....
June 25 - Bob's blood work came back good yesterday. He was dehydrated so they gave him a dose of saline solution. Still remains quite fatigued and tends to sleep quit a bit during the day but he needs that kind of rest. No real exercise as it is simply too hot. Betsy comes in tomorrow to relieve me and I will return on Thursday. Will keep the updates coming.
Sunday June 26 - Bob was feeling pretty good this morning and said he wanted to go to church. I was hesitant for him to be around many people but he insisted saying that he has a lot to be thankful for. So we went to a near buy church (Bethel UMC) that was established in 1797. The original building was right around the corner but the one we were in was built in the early 1800's as they needed more room for the parishioners. I have posted pictures below.
Tuesday 6-28: Bob looks and feels a lot better today. He received some very good news. Betsy's stem cells have taken over his body 100% and his stem cells no longer exist. BUT that is only half of the news we need to hear. The next big thing is for his body to start producing T-cells that will hopefully begin to invade and kill his lymphoma. We are very cautiously optimistic but won't know if this is happening until further test results are received. The more research I do on this "stuff", the less I seem to know or understand. But we have an excellent team of doctors and specialists that are assisting us in beating this horrible disease.
Wednesday June 29 - No doctors visits or blood work today. Bob is feeling good but due to heavy rain we were not able to do the exercise we were hoping for. Blood work and BMT meetings tomorrow morning.
Friday July1 - Met with BMT folks yesterday. His blood work continues to improve.The results of the T-cell tests are not available as of yet but perhaps by Tuesday. His condition is really improving day by day and they let him come home for the weekend. Yippee!! A well deserved break. He returns on Monday, gets his blood work on Tuesday and hopefully good news about the T-cells. Therefore I will not be updating this page until Tuesday unless something special happens.
Tuesday July 5- Met with the BMT folks this morning and received more very good news. Bob's T-Cells are now his sisters as well as his stem cells so all indications are that the transplant was successful. The next things that need to happen are for his body to produce the normal amount of red and white blood cells and for the new immune system (that is beginning to develop) to attack his lymphoma. He is physically feeling much better and more normal. He wants to be able to go back to the gym but the doctors are not allowing this at thiis time.
Friday June 8 - Met with the BMT people as well as Bob's main oncologist this morning. His numbers continue to improve and he only needed a magnesium infusion today. He is able to go home for the weekend again and his next appointment is on Tuesday. His doctor seems very confident that the entire transplant is successful and Bob can now go to the gym and begin to increase his physical activity. He still needs to be very careful of areas containing mold spores (cutting grass, weeding, etc) and be very sanitary. They feel that he may only require one visit a week beginning in about three weeks. Cannot go back to work for at least two or three months...perhaps longer.
Sunday June 10 - Bob home for the weekend. Feeling good. More after he returns to MUSC for his Tuesday appointment.
Tuesday July 12 - Bob had his blood work this morning and received more good news. He is the point where he doesn't need a primary care giver so he will be staying at the Hope Lodge for a short time longer until his scheduled appointments go to once a week. He will then return home and drive to MUSC on the days of his appointments. Our next big step will be when he gets his PET scan in about 5 weeks to see if the T-cells he is now generating are attacking the cancer. We are cautiously optimistic.
Friday July 15 - Bob once again received a good report on his blood work. The BMT folks are calling him their "star" patient. He has been allowed to go home for the weekend. He celebrates his 56th birthday tomorrow. Happy Birthday Bob!!!
Monday July 25 - Nothing to report since the last update. He may begin one session of blood work each week at which point he will leave the Hope Lodge. I will update about once a week. His blood work is improving every visit.
July 28 - This kind of says it all...pray the next step...a PET scan works!!
Bob has his PET scan scheduled for the 29th of this month. This when we find out of the stem cell transplant is doing its job of killing his cancer.
I will post the update as soon as we know the results. Please pray that this is a success.
Thursday August 25 - Bob had his PET scan yesterday and the stem cell transplant appears to be working. There is no new lymphoma showing up and the one area he has left has been reduced in size. The doctors determined after a special council meeting this morning not to begin any new regimen but continue like he is for another 2-3 months and redo the PET scan. We don't know for sure but if at that point the cancer has not gone away or shrunk any more, they may have to do a special radiation therapy that would probably run five days a week for one month. This would be highly targeted radiation as the remaining cancer is deep in his stomach area and they need to avoid radiating vital organs in the area. Please keep Bob in your prayers and check this web site on occasion for any new updates. Thank you for everything.
November 2 - Bob had another PET scan today and it showed that the cancer appears to still be there. It hasn't grown nor shrunk so we guess that is the good news. They will now determine if he needs another biopsy to confirm the cancers presence or wait until the next scan. Wish I had more but not at this time.