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
Saturday, June 27, 2009
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.
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