I hope I won't bore those of you who know this, but I'm just going to give you the run-through since my last update. My sister, Cathy, came to help out for three weeks in July and our hope was that by the time she left I would have the energy and stamina to be at home without anyone coming to help with the girls and such. The first part of the visit I was pretty tired consistently and definitely needed to stop and rest during the day. Part way into the visit when I'd gone to my doctors appointment in Atlanta my red blood count had dropped low enough that I needed a blood transfusion. This isn't a big deal (I've had several at this point) and hadn't had a transfusion since leaving the hospital in April. The day after my transfusion my energy levels were up and they continued to rise. By the time Cathy left I had driven from Atlanta to Greenville and did just fine. Laura came to visit and right after that we went to Alabama for a week to visit Amy & Joel, and Adam & Tiffany and the kids, we had a great time and had the bonus of getting to see Roy & Caroline Gray and Lee & Monica Clayton...we really enjoyed being out of town and not having it be for medical reasons and getting to visit some of our favorite people. The week we got home from AL, Addison began the first grade and she's enjoying being back in school. I really worried that I'd have a difficult time getting myself going let alone getting the girls up and at 'em every morning. My prayers were, once again, answered and I've been doing just fine...and so are the girls. My hair is growing very quickly and I've gained about fifteen pounds since my lowest weight...a very good thing as I wasn't looking or feeling very stable for a little while there. The test results from the long-term post-transplant tests were all the best possible outcome...and now I'm pretty much down to the long-term tests to verify nothing has changed. My trips to the doctor have decreased from once a week to, most recently, once a month and they should decrease again soon. All in all our family is doing well and I'm doing great, it's been quite a year but God continues to shower us with His blessings.
Wednesday, September 16, 2009
Saturday, June 27, 2009
Here lately...
Hello to all. The month of June has been a busy one. We began with a visit from Adam, Tiffany, Gibson, & Conn which was wonderful, though I will admit we had a hard time getting ourselves to bed for all the visiting we were doing once the kids were in bed. Towards the end of the visit I was getting more and more worn out and began having low-grade fevers.
The following week Margaret Witten came and stayed and helped for the week. Sadly the fevers continued and Friday Margaret took me down to Atlanta and we did several tests to see what I might have. The following day (the 13th) was Laurel's third birthday and we enjoyed having ice cream cake and doing presents...we'd gone to Pump It Up to bounce with friends earlier in the week. The following Sunday my sister, Cori and her daughter came for the week to help out. We got a call Monday for me to go to the hospital and have my chest cath. removed. My niece, Charlie took me and the MD prescribed two antibiotics; which I'm still on.
This last week Amy Dixon (Ben's sister) and her daughter, Emily, came for the week. We had a great visit and when I had my doctors appt. on Wednesday I got the good news that the blood infection was gone. I'm still on the antibiotics until they find out what caused the blood infection and those lab results aren't back yet. I'm hopeful that Monday's labs will allow me to get off the antibiotics. This coming week Ben is off of work so we'll get a good amount of family time and Ricky and Janice will come for a few days at the end of the week. The following week the girls have their birthday camp (from Oma) and my sister, Cathy will come to visit for a few weeks.
Those are our goings on, I won't say we don't stay on our toes. My doctors are pleased with my progress and I thank you for all of the continued prayers.
Love, Ceomi
The following week Margaret Witten came and stayed and helped for the week. Sadly the fevers continued and Friday Margaret took me down to Atlanta and we did several tests to see what I might have. The following day (the 13th) was Laurel's third birthday and we enjoyed having ice cream cake and doing presents...we'd gone to Pump It Up to bounce with friends earlier in the week. The following Sunday my sister, Cori and her daughter came for the week to help out. We got a call Monday for me to go to the hospital and have my chest cath. removed. My niece, Charlie took me and the MD prescribed two antibiotics; which I'm still on.
This last week Amy Dixon (Ben's sister) and her daughter, Emily, came for the week. We had a great visit and when I had my doctors appt. on Wednesday I got the good news that the blood infection was gone. I'm still on the antibiotics until they find out what caused the blood infection and those lab results aren't back yet. I'm hopeful that Monday's labs will allow me to get off the antibiotics. This coming week Ben is off of work so we'll get a good amount of family time and Ricky and Janice will come for a few days at the end of the week. The following week the girls have their birthday camp (from Oma) and my sister, Cathy will come to visit for a few weeks.
Those are our goings on, I won't say we don't stay on our toes. My doctors are pleased with my progress and I thank you for all of the continued prayers.
Love, Ceomi
Tuesday, June 2, 2009
I'm home!
A few weeks ago I was 'released' from staying in Atlanta and coming home for the week-ends to staying at home and going to Atlanta for appointments. It's been wonderful to be home with Ben and the girls and in my own space once again. My doctor is still pleased with my progress and I'm only a month away from the big 100 day post-transplant milestone. Assuming there are no changes between now and then, not too long after my 100 day appointment the doctor will start to slowly take me off of the anti-rejection medicine. Things are going well for us and I continue to improve health-wise. God continues His care for my health and our family, we continue to be thankful for all of your prayers.
Tuesday, May 5, 2009
I have to apologize for not updating for so long, I've been busy but mostly lazy. We were blessed to get into Hope Lodge on April 24...the doctor had given us permission to go home for the week-end and while at the clinic we happened to see the outpatient social worker and stopped her to ask if we were going to get into Hope Lodge or would we need to continue to stay at an extended stay hotel,and she said a room had just come available for us. We dropped a few things off to hold our place and went home for my week-end of freedom. Hope Lodge is a wonderful place to stay and we feel quite blessed to be here.
Being able to be at home with my family was everything I wanted it to be, normal family time which was perfect for all of us. Laura came back to Atlanta with me and my sister Cathy stayed with the girls, we stayed until Thursday and then were able to come back and spend some of Addy's sixth birthday with her. She was very excited to go to a Japanese steak house for dinner and the next day I went to her school and did the regular birthday 'show and tell' that her school does and she got to serve bread she had made to her classmates which was very thrilling for her. She had a party with her friends on Sunday afternoon at The Little Gym which was wonderful for her and I think overall her birthday week-end was a six year old's dream come true...and she still gets a birthday visit from her Nana and Papa this Friday so more fun is to come.
The doctor has changed some of my medications and I have a spinal tap this Monday afternoon but they are still happy with my progress so we are as well. I get to go home again this week-end but have at least the week to go after that before I can be based from home rather than Atlanta. Please continue to pray for me and that the results of the spinal tap are positive. We love and appreciate all of you and your support.
Being able to be at home with my family was everything I wanted it to be, normal family time which was perfect for all of us. Laura came back to Atlanta with me and my sister Cathy stayed with the girls, we stayed until Thursday and then were able to come back and spend some of Addy's sixth birthday with her. She was very excited to go to a Japanese steak house for dinner and the next day I went to her school and did the regular birthday 'show and tell' that her school does and she got to serve bread she had made to her classmates which was very thrilling for her. She had a party with her friends on Sunday afternoon at The Little Gym which was wonderful for her and I think overall her birthday week-end was a six year old's dream come true...and she still gets a birthday visit from her Nana and Papa this Friday so more fun is to come.
The doctor has changed some of my medications and I have a spinal tap this Monday afternoon but they are still happy with my progress so we are as well. I get to go home again this week-end but have at least the week to go after that before I can be based from home rather than Atlanta. Please continue to pray for me and that the results of the spinal tap are positive. We love and appreciate all of you and your support.
Wednesday, April 22, 2009
Quick Update - Day 28
Ceomi is now 28 days post transplant. She is doing great. She has been out of the hospital for almost 2 weeks. She went to the clinic 3 times last week and will go twice this week. She has a goodly number of pills to swallow but her biggest work is regaining strength. Each day, she is doing a bit more. She has been given the go-ahead to go to venture out to lightly populated areas and has been exploring parks and stores in the area. Since her immune system is suppressed, she will need to be careful around crowds and kids for quite a while. She has the difficult task of breaking the habit of hugging and shaking hands until they allow her immune system to come back.
She'll have some blood tests on Friday that will measure how well engraftment has gone. So far, the doctors are very pleased. She has not developed any significant signs of Graft Vs. Host Disease (signs of rejection). Her blood tests have all looked good and are largely normal, indicating good engraftment. Her donor stem cells have gone to work and are producing new blood cells. The doctors will continue to monitor her anti-rejection drug levels in Atlanta but we're still praying that she'll be released to return to Greenville in mid-May. Some of the members of Embry Hills Church of Christ have been providing delicious meals. That has been a wonderful touch of home. We are so appreciative of all they have done.
The doctors are allowing Ceomi to visit Greenville for the weekend both this week and hopefully next. Addy will be turning 6 next week and Ceomi will be able to come home to celebrate. What a blessing.
Thank you so much for all of the help, prayers and cards. I know that Ceomi has felt very blessed to realize how many people are thinking of her and praying for her.
She'll have some blood tests on Friday that will measure how well engraftment has gone. So far, the doctors are very pleased. She has not developed any significant signs of Graft Vs. Host Disease (signs of rejection). Her blood tests have all looked good and are largely normal, indicating good engraftment. Her donor stem cells have gone to work and are producing new blood cells. The doctors will continue to monitor her anti-rejection drug levels in Atlanta but we're still praying that she'll be released to return to Greenville in mid-May. Some of the members of Embry Hills Church of Christ have been providing delicious meals. That has been a wonderful touch of home. We are so appreciative of all they have done.
The doctors are allowing Ceomi to visit Greenville for the weekend both this week and hopefully next. Addy will be turning 6 next week and Ceomi will be able to come home to celebrate. What a blessing.
Thank you so much for all of the help, prayers and cards. I know that Ceomi has felt very blessed to realize how many people are thinking of her and praying for her.
Monday, April 13, 2009
Day 18 Update
The days have both flown and crawled by. I did have mucositis but it was not as severe as it was in January. I stopped eating and drinking for about 8 days due to the pain from swallowing. For those of you who are wondering, no, the hunger doesn't go away. One of the odd benefits of the mouth & throat pain was that even though I couldn't swallow the pills for the neuropathy, the pain in my hands eased considerably. My feet also improved for a few days.
During this time, I was blessed with several visitors. From my family, my Aunt Elaine came and stayed for several days, as well as Laura. Ben comes every weekend and was able to come for a few extra days due to a Good Friday holiday. That same weekend, Matt Caudill, Lindsay Mast & Kristiana Burk came to visit. It was excellent to get to see them and visit. A friend of Ben's parents, Kathy and her new husband, came to visit and brought a basket of goodies from the Powers Ferry congregation. Gayle Hinds and other friends from our congregation in Taylors sent me several outfits for me to wear while healing. I am grateful to have so many thoughtful friends.
The doctors are very pleased by my blood counts. My white blood cell and neutrophil counts are in the normal range. There are several standards that must be met prior to discharge from the hospital (ability to swallow pills, eat/drink, normal blood counts, etc.). I'm happy to say that I reached those milestones on Saturday, April 11th. I have to remain in Atlanta for the next 4-6 weeks while my anti-rejection drugs are regulated and I regain some strength.
While my blood counts are now registering in the normal range, my immune system is supressed due to the drugs that keep my stem cells from rejecting me. I will not be allowed to clean house, change diapers, garden, etc. until I stop taking the anti-rejection drugs. In a year or so, I will actually have to be re-vaccinated so that I don't get the measles or anything else. I will also have to be careful in crowds and wear a mask for the time-being.
We are not currently at Hope Lodge because they are full and are staying in a kitchenette hotel near Emory until a space opens. Please send mail to our home address for now. We have a new round of helpers coming. Ben's sister Amy is staying with the girls this week while Laura is with me in Atlanta. My sister Cathy will be coming down next weekend for 2 weeks and she and Laura will take turns being with me and with the girls. In May, my Aunt Elaine will return and my friend Rachel will also be coming. Laura and I are already sad at the thought of her going home at the end of May.
Laura and the girls went down to Charleston to visit with Ben's parents over Addy's spring break since they couldn't see me. I'm looking forward to seeing the girls this weekend. It's been a long 3 weeks without them.
As always, thank you for your concerns for me and my family and for your prayers. We have been overwhelmed by the cards, gifts and outpouring of love and support from so many. God has surely blessed me with so many caring friends and family.
During this time, I was blessed with several visitors. From my family, my Aunt Elaine came and stayed for several days, as well as Laura. Ben comes every weekend and was able to come for a few extra days due to a Good Friday holiday. That same weekend, Matt Caudill, Lindsay Mast & Kristiana Burk came to visit. It was excellent to get to see them and visit. A friend of Ben's parents, Kathy and her new husband, came to visit and brought a basket of goodies from the Powers Ferry congregation. Gayle Hinds and other friends from our congregation in Taylors sent me several outfits for me to wear while healing. I am grateful to have so many thoughtful friends.
The doctors are very pleased by my blood counts. My white blood cell and neutrophil counts are in the normal range. There are several standards that must be met prior to discharge from the hospital (ability to swallow pills, eat/drink, normal blood counts, etc.). I'm happy to say that I reached those milestones on Saturday, April 11th. I have to remain in Atlanta for the next 4-6 weeks while my anti-rejection drugs are regulated and I regain some strength.
While my blood counts are now registering in the normal range, my immune system is supressed due to the drugs that keep my stem cells from rejecting me. I will not be allowed to clean house, change diapers, garden, etc. until I stop taking the anti-rejection drugs. In a year or so, I will actually have to be re-vaccinated so that I don't get the measles or anything else. I will also have to be careful in crowds and wear a mask for the time-being.
We are not currently at Hope Lodge because they are full and are staying in a kitchenette hotel near Emory until a space opens. Please send mail to our home address for now. We have a new round of helpers coming. Ben's sister Amy is staying with the girls this week while Laura is with me in Atlanta. My sister Cathy will be coming down next weekend for 2 weeks and she and Laura will take turns being with me and with the girls. In May, my Aunt Elaine will return and my friend Rachel will also be coming. Laura and I are already sad at the thought of her going home at the end of May.
Laura and the girls went down to Charleston to visit with Ben's parents over Addy's spring break since they couldn't see me. I'm looking forward to seeing the girls this weekend. It's been a long 3 weeks without them.
As always, thank you for your concerns for me and my family and for your prayers. We have been overwhelmed by the cards, gifts and outpouring of love and support from so many. God has surely blessed me with so many caring friends and family.
Tuesday, March 31, 2009
Mon & Tues, Days 5 & 6
Ceomi's white blood cell (WBC) counts have dropped. This is the expected result of the chemotherapy. It is clearing the way for the donor cells to establish themselves as Kings of the Hill. The outcome of this though is that Ceomi will feel somewhat terrible. Her neuropathy is continuing (mainly pain in her hands and feet) and may be slightly worse for a while since the treatment is pills and it is getting difficult for her to swallow them and then to keep them down.
As her WBC count is low, the lining of her esophagus and mouth is irritated and sores can develop (mucositis). There are few remedies for this other than time and rising WBC counts. They try to ease it with special mouthwashes and pain medication. It makes it very difficult for Ceomi to swallow liquids or eat.
These are the hard days, especially since the treatment in Chicago gave a preview of some of what is to come. The nurses refer to this time as being in the basement. I think that's a pretty apt description of how it feels BUT good days are coming very soon. This part is just the necessary evil to make it to the happy days in the sun that are coming right around the corner.
Speaking for Ceomi and her family, we realize just how many people are praying for her and cannot express the comfort that it brings to know how often our Father hears her name. Her mucositis during induction chemo. was quite severe. Please pray that she will not have such a strong bout of it this time.
As her WBC count is low, the lining of her esophagus and mouth is irritated and sores can develop (mucositis). There are few remedies for this other than time and rising WBC counts. They try to ease it with special mouthwashes and pain medication. It makes it very difficult for Ceomi to swallow liquids or eat.
These are the hard days, especially since the treatment in Chicago gave a preview of some of what is to come. The nurses refer to this time as being in the basement. I think that's a pretty apt description of how it feels BUT good days are coming very soon. This part is just the necessary evil to make it to the happy days in the sun that are coming right around the corner.
Speaking for Ceomi and her family, we realize just how many people are praying for her and cannot express the comfort that it brings to know how often our Father hears her name. Her mucositis during induction chemo. was quite severe. Please pray that she will not have such a strong bout of it this time.
Friday-Sunday, Days 2 - 4
Children under the age of 6 are not allowed on Ceomi's hospital floor and Ceomi is limited to when she's allowed to leave the floor. We thought that Ceomi wouldn't be able to se the girls for several weeks after their last visit on Sat, 3/21.
Dr. Langston gave Ceomi a wonderful belated 2nd birthday gift on Friday. She casually mentioned that the girls could visit over the weekend. Mom and I did a quick packing job and threw the girls in the car Friday after naps and took off for Atlanta. We must have had a slight head start on Ben because we got to Atlanta just before Ben.
Ceomi was able to visit with the girls several times between Saturday and Sunday. We had to visit in some semi-private rooms in the main lobby. Ceomi's endurance was impressive and she was able to spend several hours with them at a stretch, making occasional visits back to her room for medications. To say that both Mommy and girls were estatic would be quite the understatement. The girls did some puzzles and enjoyed playing nurse with Mommy. We didn't get a picture of it but if anyone ever needs an impromptu headband, consider a hospital mask. It's pretty cute, expecially on a 5 year old.
On Sunday, Ben and my mom took the girls back to Greenville while I am staying in Atlanta for the week.
Thursday, 3/26/09 - Day 1
Thursday was the day of arrivals. Ceomi's friend Caroline came to stay for a few days and my mom (Elaine) flew in to spend 2 weeks. I know that Ceomi and Caroline enjoyed being together. After 11 years of hearing stories about each other, Caroline and I finally met. We already knew faces and voices but it was great to finally meet in person. I think we may have to plan a girls' weekend sometime.
Elaine spent a few minutes visiting and then went to SC to stay with the girls for the next 10 days.
Have a Dino-mite Birthday!
Ceomi's days are now tracked by numbers. Transplant Day was Day 0. It is hoped that she'll be able to leave the hospital for an out-patient facility around Day +18.
In the stem-cell transplant world, Transplant Day is considered your Second Birthday. A big production is made of the transplant by the nurses. They come in during the transplant and sing Happy Birthday and bring balloons for your door. As you walk the halls of her unit, you see a lot of balloon bouquets on doors.
Some balloons were ordered for Ceomi in honor of this new birthday. The florist was told to write Happy Second Birthday on the card. Ceomi received a lovely bouquet of dinorsaur and fairy balloons. The delivery man was a bit embarrassed when he realized she wasn't 2 years old.
Every once in a while, we hear the nurses singing Happy Birthday to a patient and we know that someone else has a new date on the calendar too.
Thursday, March 26, 2009
End of Chemo & looking forward to brighter days
So far the hospitalization has continued to go well. I feel good and the doctors are pleased with the progress I've made. Or as they like to say, "No issues, no problems, we're happy." I enjoyed a visit from Mary Broadwell, who attends at the Embry Hill congregation on Tuesday. She shared her stem cell transplant experience with me.
I've also been able to reconnect with Lindsay Wolfgang Mast and Krisiana Burk (friends from FC). I've really enjoyed being able to spend time with them again. I've appreciated Laura's company over the last few days too. I'm looking forward to a visit with Caroline Gray who will be spending a few days and then a highlight will be seeing Ben for the weekend. It will be a while before I can see my girls due to my dropping counts but we talk every day. My Aunt Elaine is flying in this afternoon to spend 2 weeks. She'll be with the girls for most of it while Laura is with me at the hospital.
Chemo concluded on Monday and I had an official Day of Rest on Tuesday prior to the Wed. transplant. Hopefully, I have experienced my last chemotherapy ever. It wanted me to remember it so it went out with a bang. Monday was a bit intense but I am thrilled to hopefully have it forever done.
Now, we wait for the stem cells to engraft. My blood counts will plummet in the next few days as the chemo accomplishes its task of demolishing my immune system. This paves the way for Clayton's cells to come in and save the day. 7 million tiny cells riding to the rescue.
The next 2 weeks should encompass some of the roughest days as my immune system disappears and then works to re-establish itself. The mucositis that was such a plague during my induction chemo may return during these days. Please pray that the symptoms that I experience will respond well to treatments and that any mucositis will be mild. I realize that so many having been praying for me and for my family and I am so grateful for every remembrance.
Today marks 3 months from my diagnosis. We are amazed that we have gone from diagnosis to hopefully a disease-ending transplant in such a short time. We know that so many others with this disease struggle for so long to find a donor. We are so grateful for the healing hand of God.
I've also been able to reconnect with Lindsay Wolfgang Mast and Krisiana Burk (friends from FC). I've really enjoyed being able to spend time with them again. I've appreciated Laura's company over the last few days too. I'm looking forward to a visit with Caroline Gray who will be spending a few days and then a highlight will be seeing Ben for the weekend. It will be a while before I can see my girls due to my dropping counts but we talk every day. My Aunt Elaine is flying in this afternoon to spend 2 weeks. She'll be with the girls for most of it while Laura is with me at the hospital.
Chemo concluded on Monday and I had an official Day of Rest on Tuesday prior to the Wed. transplant. Hopefully, I have experienced my last chemotherapy ever. It wanted me to remember it so it went out with a bang. Monday was a bit intense but I am thrilled to hopefully have it forever done.
Now, we wait for the stem cells to engraft. My blood counts will plummet in the next few days as the chemo accomplishes its task of demolishing my immune system. This paves the way for Clayton's cells to come in and save the day. 7 million tiny cells riding to the rescue.
The next 2 weeks should encompass some of the roughest days as my immune system disappears and then works to re-establish itself. The mucositis that was such a plague during my induction chemo may return during these days. Please pray that the symptoms that I experience will respond well to treatments and that any mucositis will be mild. I realize that so many having been praying for me and for my family and I am so grateful for every remembrance.
Today marks 3 months from my diagnosis. We are amazed that we have gone from diagnosis to hopefully a disease-ending transplant in such a short time. We know that so many others with this disease struggle for so long to find a donor. We are so grateful for the healing hand of God.
Clayton - The donor hero
Clayton did fabulously. He was a stem-cell making machine. He received 4 shots of Neupogen each morning Saturday through Tuesday. The shots caused a lot of bone aches, particularly in the larger bones. He described it as worse than the worst flu he's ever had.
On Wed morning, he received 2 Neupogen shots and then they began the harvesting process. He had to lay in a bed perfectly still for 4 hours. They took the blood from his right arm and ran it through an apheresis machine and re-infused the blood into his left arm. He came through it like a trooper.
The goal for a stem cell transplant is 5 million stem cells. They are willing to accept 3 million. Clayton produced 7.33 million. They were infused into Ceomi over about 30 minutes. She did great. No reaction at all. Since they were able to harvest so many cells, there isn't a need to do a 2nd harvest. Clayton will rest for a few days and head home to Wisconsin once he is cleared by the doctors.
Wednesday, March 25, 2009
Sunday, March 22, 2009
Arrivals & Departures
Friday and Saturday went well. Ceomi was still able to leave the unit (and the hospital). The girls and I picked up Ceomi and Carolyn (her mom) and went out to dinner. Her brother Clayton arrived part-way through dinner so we had a small reunion at the restaurant. Ben made it down safely after work.
We all had breakfast together at the hospital. Ceomi left for chemo after that and Clayton began his Neupogen shots. After a quick run to the airport for Aunt Carolyn's flight home, we went back to the hospital for lunch with Ceomi and Ben. Happily, Aunt Carolyn's flight was uneventful and she is back in Wisconsin to spend a few days with the other young grandkids before going home. She is going to be missed.
This portion of the chemo requires an IV to run continuously so Ceomi is now restricted to her hospital floor. We were really glad that we were able to have 3 visits with her this weekend.
Laurel was talking about a boo-boo on the way home and Addy explained to her exactly how a Band-Aid is made. She suggested that Laurel become a doctor when she grows up because then she can make Band-Aids for people. She knows all about what doctors do now. Addy has seen it all. :)
Addy is such a friendly girl. She made fast friends with the waiters from dinner Friday night. She was very excited to see one of them Saturday afternoon. Das & Saha were from India and she really wanted to know if they were brothers. She was very excited to be able to ask (just in case you're wondering, they're not).
I'm going to give a quick plug to Atlanta Hospitality House. It's a large home in the Druid Hills neighborhood that is for families of patients staying in any Atlanta area hospital. They have breakfast and lunch foods and cook a family-style dinner for everyone. The rooms are divided into men and women's rooms, hostel-style. It's a beautiful home on about 30 acres. It was orginally an estate built in the '20s. People who aren't staying there can still stop by for a meal, a shower, a nap, laundry, etc. They do all of this on a non-profit's budget and suggest a $10/donation per night. What a great place! Clayton is staying there and has nothing but the nicest things to say about the place and the staff. So, if anyone in the Atlanta area is looking for a volunteer opportunity or a place to donate some funds, check it out.
We all had breakfast together at the hospital. Ceomi left for chemo after that and Clayton began his Neupogen shots. After a quick run to the airport for Aunt Carolyn's flight home, we went back to the hospital for lunch with Ceomi and Ben. Happily, Aunt Carolyn's flight was uneventful and she is back in Wisconsin to spend a few days with the other young grandkids before going home. She is going to be missed.
This portion of the chemo requires an IV to run continuously so Ceomi is now restricted to her hospital floor. We were really glad that we were able to have 3 visits with her this weekend.
Laurel was talking about a boo-boo on the way home and Addy explained to her exactly how a Band-Aid is made. She suggested that Laurel become a doctor when she grows up because then she can make Band-Aids for people. She knows all about what doctors do now. Addy has seen it all. :)
Addy is such a friendly girl. She made fast friends with the waiters from dinner Friday night. She was very excited to see one of them Saturday afternoon. Das & Saha were from India and she really wanted to know if they were brothers. She was very excited to be able to ask (just in case you're wondering, they're not).
I'm going to give a quick plug to Atlanta Hospitality House. It's a large home in the Druid Hills neighborhood that is for families of patients staying in any Atlanta area hospital. They have breakfast and lunch foods and cook a family-style dinner for everyone. The rooms are divided into men and women's rooms, hostel-style. It's a beautiful home on about 30 acres. It was orginally an estate built in the '20s. People who aren't staying there can still stop by for a meal, a shower, a nap, laundry, etc. They do all of this on a non-profit's budget and suggest a $10/donation per night. What a great place! Clayton is staying there and has nothing but the nicest things to say about the place and the staff. So, if anyone in the Atlanta area is looking for a volunteer opportunity or a place to donate some funds, check it out.
Friday, March 20, 2009
So far...
Well, I don't have a whole lot to report. I have not been sick as of yet...they said possibly Sunday and Monday as I have a different chemo regimen from my current one I'll have a hard time but so far this hospital stay has not been too horrible. I have enjoyed the visiting with my Mom and am very glad she was able to come and help to start this process out on such a positive note. We were able to go out for a walk on Emory's campus (not far onto the campus) and see the spring flower and tree growth which we both enjoyed and then we got lunch from the student cafeteria (way better than the hospital cafeteria) and brought it up to my room to eat.
Laura is bringing the girls up to visit this afternoon and Ben will be up after work so this evening will be very busy. Clayton will get in this evening a bit later so all in all a brief family reunion and hopefully some mellow family time (the mellow being for my sake). I appreciate all the prayers and thoughts being sent my way and on behaf of our little family.
Laura is bringing the girls up to visit this afternoon and Ben will be up after work so this evening will be very busy. Clayton will get in this evening a bit later so all in all a brief family reunion and hopefully some mellow family time (the mellow being for my sake). I appreciate all the prayers and thoughts being sent my way and on behaf of our little family.
Wednesday, March 18, 2009
Stem Cell Transplant Explanation
Most of the following information is directly from the NIH cancer.gov website.
Chemotherapy and radiation therapy generally affect cells that divide rapidly. They are used to treat cancer because cancer cells divide more often than most healthy cells. However, because bone marrow cells also divide frequently, high-dose treatments can severely damage or destroy the patient’s bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to carry oxygen, fight infection, and prevent bleeding. BMT and PBSCT replace stem cells destroyed by treatment. The healthy, transplanted stem cells can restore the bone marrow’s ability to produce the blood cells the patient needs.
After the stem cells are collected from Clayton, Ceomi will receive them through her central line (just like a blood transfusion). After entering the bloodstream, the stem cells travel to the bone marrow, where they begin to produce new white blood cells, red blood cells, and platelets in a process known as “engraftment.” Engraftment usually occurs within about 2 to 4 weeks after transplantation. Doctors monitor it by checking blood counts on a frequent basis. Complete recovery of immune function takes much longer, however—up to several months for autologous transplant recipients and 1 to 2 years for patients receiving allogeneic or syngeneic transplants. Ceomi's transplant is allogeneic since her brother is her donor. Doctors evaluate the results of various blood tests to confirm that new blood cells are being produced and that the cancer has not returned. Bone marrow aspiration (the removal of a small sample of bone marrow through a needle for examination under a microscope) can also help doctors determine how well the new marrow is working.
In some types of leukemia, the graft-versus-tumor (GVT) effect that occurs after allogeneic BMT and PBSCT is crucial to the effectiveness of the treatment. GVT occurs when white blood cells from the donor (the graft) identify the cancer cells that remain in the patient’s body after the chemotherapy and/or radiation therapy (the tumor) as foreign and attack them.
With allogeneic transplants, a complication known as graft-versus-host disease (GVHD) sometimes develops. GVHD occurs when white blood cells from the donor (the graft) identify cells in the patient’s body (the host) as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This complication can develop within a few weeks of the transplant (acute GVHD) or much later (chronic GVHD). To prevent this complication, the patient may receive medications that suppress the immune system. Additionally, the donated stem cells can be treated to remove the white blood cells that cause GVHD in a process called “T-cell depletion.” If GVHD develops, it can be very serious and is treated with steroids or other immunosuppressive agents. GVHD can be difficult to treat, but some studies suggest that patients with leukemia who develop GVHD are less likely to have the cancer come back.
(Bolded info is directly from the NIH cancer.gov website.)
Chemotherapy and radiation therapy generally affect cells that divide rapidly. They are used to treat cancer because cancer cells divide more often than most healthy cells. However, because bone marrow cells also divide frequently, high-dose treatments can severely damage or destroy the patient’s bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to carry oxygen, fight infection, and prevent bleeding. BMT and PBSCT replace stem cells destroyed by treatment. The healthy, transplanted stem cells can restore the bone marrow’s ability to produce the blood cells the patient needs.
After the stem cells are collected from Clayton, Ceomi will receive them through her central line (just like a blood transfusion). After entering the bloodstream, the stem cells travel to the bone marrow, where they begin to produce new white blood cells, red blood cells, and platelets in a process known as “engraftment.” Engraftment usually occurs within about 2 to 4 weeks after transplantation. Doctors monitor it by checking blood counts on a frequent basis. Complete recovery of immune function takes much longer, however—up to several months for autologous transplant recipients and 1 to 2 years for patients receiving allogeneic or syngeneic transplants. Ceomi's transplant is allogeneic since her brother is her donor. Doctors evaluate the results of various blood tests to confirm that new blood cells are being produced and that the cancer has not returned. Bone marrow aspiration (the removal of a small sample of bone marrow through a needle for examination under a microscope) can also help doctors determine how well the new marrow is working.
In some types of leukemia, the graft-versus-tumor (GVT) effect that occurs after allogeneic BMT and PBSCT is crucial to the effectiveness of the treatment. GVT occurs when white blood cells from the donor (the graft) identify the cancer cells that remain in the patient’s body after the chemotherapy and/or radiation therapy (the tumor) as foreign and attack them.
With allogeneic transplants, a complication known as graft-versus-host disease (GVHD) sometimes develops. GVHD occurs when white blood cells from the donor (the graft) identify cells in the patient’s body (the host) as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This complication can develop within a few weeks of the transplant (acute GVHD) or much later (chronic GVHD). To prevent this complication, the patient may receive medications that suppress the immune system. Additionally, the donated stem cells can be treated to remove the white blood cells that cause GVHD in a process called “T-cell depletion.” If GVHD develops, it can be very serious and is treated with steroids or other immunosuppressive agents. GVHD can be difficult to treat, but some studies suggest that patients with leukemia who develop GVHD are less likely to have the cancer come back.
(Bolded info is directly from the NIH cancer.gov website.)
Tuesday, March 17, 2009
And we're off. . . . .
Ceomi, Ben and Ceomi's mom, Carolyn, went down to Atlanta tonight in preparation for tomorrow's admittance. She'll be admitted to Emory's University Hospital to begin the stem cell transplant. She should spend about 4 weeks in-patient at Emory. Once she's released from the hospital, she'll spend about 6 weeks at Hope Lodge (an Amer. Cancer Society facility) in Atlanta while her anti-rejection drugs are regulated.
She's due at the interventional radiology lab at 7 am to have her PICC line removed and a central line put into her chest. This central line allows blood to be drawn and medications injected without having to stick her each time. The line will be in place throughout her treatment and has a lower incidence of infection than the PICC line (which was in her arm).
They will start her chemotherapy Wed night and it will run for 6 days. She'll get a day to rest and the stem cell transplant will be on Wed, 3/25. We are hoping that the mucositis (sores in mouth and throat) that was so difficult during the first chemo will either be absent (not likely) or lessened this time. Please pray that the chemo side effects are manageable and respond well to treatment.
In transplant lingo, 3/25 will be her Second Birthday. Her brother Clayton is her donor. He will be coming to Atlanta this Friday and will undergo a series of Neupogen shots. These shots stimulate stem cell production. The stem cells are collected in a procedure (apheresis) that is somewhat similar to dialysis. A line will be placed in his arm and his blood will be pulled out, "strained" to remove the stem cells and then infused back into him. The days of drilling into the donor's hip bones and sternum are happily long gone.
Ceomi has been experiencing neuropathy (numbness & extreme sensitivity, particularly in her hands and feet) since her last chemo in Feb. She has monocytic leukemia and in this type the leukemia cells are more likely to invade the lining of the spinal canal or brain. She has had 2 spinal taps in the last 5 weeks to check for any CNS involvement. So far, while they have shown thickened spinal fluid and the presence of protein, no leukemia cells have been found. They did a MRI on 3/12 to search for any masses and found none. She has diffuse inflammation where the nerves exit the brain and spine but the neurologist attributes the changes to the treatments and not to the presence of leukemia itself. Her oncologist will have steroids administered during the chemo this week and is hopeful that the steroids will help calm the nerves and reduce the pain. A third and hopefully final spinal tap will be done this week to check again for the presence of leukemia cells.
Ceomi continues to be very focused and is in good spirits. Once we have her room number, we will post her address for anyone who wants to send a card. I would recommend using her home address as the return address, in case she is moved. This website is probably the best place to find out how she's feeling. If you plan to visit her, please call her cell or mine to see if she's up to visits before going. The unit she is on is restricted for the protection of the patients. Her immune system will be destroyed by the chemo and will not be re-established until the donor cells engraft. The hospital takes precautions to protect patients with these conditions. No children are allowed and anyone with cold/virus symptoms must not visit. Also, plants and flowers (and some foods) are not allowed due to possible bacterial infections.
We are all aware of the numerous prayers that have been offered on her behalf and are confident that God will see her through this. We are very grateful for the love and support that so many have offered. Please continue to pray for her, Ben and the girls.
She's due at the interventional radiology lab at 7 am to have her PICC line removed and a central line put into her chest. This central line allows blood to be drawn and medications injected without having to stick her each time. The line will be in place throughout her treatment and has a lower incidence of infection than the PICC line (which was in her arm).
They will start her chemotherapy Wed night and it will run for 6 days. She'll get a day to rest and the stem cell transplant will be on Wed, 3/25. We are hoping that the mucositis (sores in mouth and throat) that was so difficult during the first chemo will either be absent (not likely) or lessened this time. Please pray that the chemo side effects are manageable and respond well to treatment.
In transplant lingo, 3/25 will be her Second Birthday. Her brother Clayton is her donor. He will be coming to Atlanta this Friday and will undergo a series of Neupogen shots. These shots stimulate stem cell production. The stem cells are collected in a procedure (apheresis) that is somewhat similar to dialysis. A line will be placed in his arm and his blood will be pulled out, "strained" to remove the stem cells and then infused back into him. The days of drilling into the donor's hip bones and sternum are happily long gone.
Ceomi has been experiencing neuropathy (numbness & extreme sensitivity, particularly in her hands and feet) since her last chemo in Feb. She has monocytic leukemia and in this type the leukemia cells are more likely to invade the lining of the spinal canal or brain. She has had 2 spinal taps in the last 5 weeks to check for any CNS involvement. So far, while they have shown thickened spinal fluid and the presence of protein, no leukemia cells have been found. They did a MRI on 3/12 to search for any masses and found none. She has diffuse inflammation where the nerves exit the brain and spine but the neurologist attributes the changes to the treatments and not to the presence of leukemia itself. Her oncologist will have steroids administered during the chemo this week and is hopeful that the steroids will help calm the nerves and reduce the pain. A third and hopefully final spinal tap will be done this week to check again for the presence of leukemia cells.
Ceomi continues to be very focused and is in good spirits. Once we have her room number, we will post her address for anyone who wants to send a card. I would recommend using her home address as the return address, in case she is moved. This website is probably the best place to find out how she's feeling. If you plan to visit her, please call her cell or mine to see if she's up to visits before going. The unit she is on is restricted for the protection of the patients. Her immune system will be destroyed by the chemo and will not be re-established until the donor cells engraft. The hospital takes precautions to protect patients with these conditions. No children are allowed and anyone with cold/virus symptoms must not visit. Also, plants and flowers (and some foods) are not allowed due to possible bacterial infections.
We are all aware of the numerous prayers that have been offered on her behalf and are confident that God will see her through this. We are very grateful for the love and support that so many have offered. Please continue to pray for her, Ben and the girls.
Wednesday, February 11, 2009
The background
Ceomi was diagnosed with Acute Myelogenous Leukemia (type M5) while on vacation in Chicago on 12/26/08. She was admitted to Northwestern's Prentice Women's Hospital for 3 1/2 weeks and received induction chemotherapy.
Her bone marrow biopsy at the end of chemo was clean indicating that the leukemia was temporarily beaten down. Her doctors recommended a bone marrow transplant (stem cell transplant in the current lingo) as her best course of treatment.
Ceomi was released and went home to SC at the end of January. Her treatment was transferred to the Winship Cancer Institute at Emory in Atlanta. She underwent a round of consolidation chemo there in early February.
Her brother Clayton is a match and will be donating stem cells to her in mid-March. She will be spending approx. 10 weeks in Atlanta receiving treatment with the time divided between a hospital stay and outpatient treatment.
Her bone marrow biopsy at the end of chemo was clean indicating that the leukemia was temporarily beaten down. Her doctors recommended a bone marrow transplant (stem cell transplant in the current lingo) as her best course of treatment.
Ceomi was released and went home to SC at the end of January. Her treatment was transferred to the Winship Cancer Institute at Emory in Atlanta. She underwent a round of consolidation chemo there in early February.
Her brother Clayton is a match and will be donating stem cells to her in mid-March. She will be spending approx. 10 weeks in Atlanta receiving treatment with the time divided between a hospital stay and outpatient treatment.
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