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.
Thursday, March 26, 2009
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.
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