Wednesday, April 30, 2014
Day 12
Wednesday, April 30
Good news the past couple of days... the new cells have begun engrafting!
Monday (Day 10) was by far one of Gail's worst days in the hospital. She awoke at about 3am feeling poor. Within about 30 minutes she began to experience difficulty breathing, tightness in her chest and her lungs started filling with fluid. /the nurses responded quickly and notified the night on-call doctors who quickly gave her Lasix to flush the fluids out of her body. After all the tests were performed....chest X-ray, EKG, blood enzymes etc.the doctor said that it appears she had what is called a "cytokine storm". Not really sure how to define that in the blog (it's one of those things you can google), but basically with the white cells starting to engraft, it created some type of dangerous "storm" in her body. Monday she continued feeling run down and sleepy.
Yesterday, Gail's white cell count did indeed move up and she felt really great all day.Today the white cell count jumped even more, but unfortunately the feeling great part did not continue. But she continues to make really good progress.
If everything continues to proceed as it is, she will likely be discharged this coming Monday! They have even hinted at the possibility that she could even be released as early as Friday (her original discharge date was the 16th). But as has been the case all along, this is a day-to-day process and not one where you can get too far ahead of yourself. Something is always changing!
Now that they have moved the discharge date to early next week, Jerry has had to take a couple of classes on how to take care of her central veinous catheter. His test is tomorrow... and hopefully he will know what he is doing!
Monday, April 28, 2014
Day 10
Monday, April 28
Today was a very difficult day for Gail. She woke up around 3:00 am having difficulty breathing. Fluid building up around her lungs was the problem. She was put on oxygen, given a diuretic, had a chest x-ray and was given an EKG.This was all done before 6:00 am! Respiratory therapy was started early in the morning and Gail remained on oxygen throughout the day.
Things started settling down for Gail within a few hours, and by the time her doctor made his rounds around 9:30, she was breathing a whole lot better and the EKG and x-ray came back OK. When her doctor checked her breathing, he asked how she was doing. She said she felt really rotten... his response was "good, you are doing really good". It was our understanding this is all part of the process as you move toward engraphment.
Gail's platelet count was low as well so she received platelets in the early afternoon. A dosage of Benadryl precedes the platelet transfusion, so Gail spent most of the afternoon very drowsy.
It is definitely not an easy process... so thanks for all the kind words and prayers!
Today was a very difficult day for Gail. She woke up around 3:00 am having difficulty breathing. Fluid building up around her lungs was the problem. She was put on oxygen, given a diuretic, had a chest x-ray and was given an EKG.This was all done before 6:00 am! Respiratory therapy was started early in the morning and Gail remained on oxygen throughout the day.
Things started settling down for Gail within a few hours, and by the time her doctor made his rounds around 9:30, she was breathing a whole lot better and the EKG and x-ray came back OK. When her doctor checked her breathing, he asked how she was doing. She said she felt really rotten... his response was "good, you are doing really good". It was our understanding this is all part of the process as you move toward engraphment.
Gail's platelet count was low as well so she received platelets in the early afternoon. A dosage of Benadryl precedes the platelet transfusion, so Gail spent most of the afternoon very drowsy.
It is definitely not an easy process... so thanks for all the kind words and prayers!
Sunday, April 27, 2014
Day 9
Sunday, April 27
Gail spent a nice Sunday with visitors. It started with a visit with her brother Mark; also sisters-in-law Diane and Pam came by this afternoon. Stephen and his good friend from college, Daniel, came to donate platelets and blood and spent some time with her this afternoon as well.
She continues to do all her walking and breathing exercises that will contribute to the healing process. One of the resident doctors who also saw Gail several times in clinic, stopped by today and commented that she is doing really well. She continues to hang tough despite dealing with a lot of pain and discomfort.
Add to the fact that Pope John XXlll and Pope John Paul ll today were added to the Litany of Saints... and it becomes a really good day!
Gail spent a nice Sunday with visitors. It started with a visit with her brother Mark; also sisters-in-law Diane and Pam came by this afternoon. Stephen and his good friend from college, Daniel, came to donate platelets and blood and spent some time with her this afternoon as well.
She continues to do all her walking and breathing exercises that will contribute to the healing process. One of the resident doctors who also saw Gail several times in clinic, stopped by today and commented that she is doing really well. She continues to hang tough despite dealing with a lot of pain and discomfort.
Add to the fact that Pope John XXlll and Pope John Paul ll today were added to the Litany of Saints... and it becomes a really good day!
Saturday, April 26, 2014
Day 7 & 8
Friday, April 25
Not that great a day, rather one filled with a good deal of nausea, vomiting, etc. But on a positive note, Gail was able to see a Physical Therapist who was able to relieve muscle spasms in her right shoulder; that allowed for a much needed better night sleep. Neupogen shots started today, which are meant to help stimulate the growth of white cells. Gail’s white count has remained at zero since the transplant (which is expected). Stephen joined his mom for dinner this evening.
Saturday, April 26
A better day overall... food staying down was a big reason for that. Gail had a nice, long enjoyable visit with her speech therapist friend Liz Aussenberg. Also an occupational therapist stopped by and gave her some good advice on keeping her shoulder limber to prevent the spasms from returning. Today was Day 2 of the Neupogen shots. Tonight, Nathan enjoyed dinner with his mom.
Not that great a day, rather one filled with a good deal of nausea, vomiting, etc. But on a positive note, Gail was able to see a Physical Therapist who was able to relieve muscle spasms in her right shoulder; that allowed for a much needed better night sleep. Neupogen shots started today, which are meant to help stimulate the growth of white cells. Gail’s white count has remained at zero since the transplant (which is expected). Stephen joined his mom for dinner this evening.
Saturday, April 26
A better day overall... food staying down was a big reason for that. Gail had a nice, long enjoyable visit with her speech therapist friend Liz Aussenberg. Also an occupational therapist stopped by and gave her some good advice on keeping her shoulder limber to prevent the spasms from returning. Today was Day 2 of the Neupogen shots. Tonight, Nathan enjoyed dinner with his mom.
Thursday, April 24, 2014
Day 6
Thursday, April 24
Gastrointestinal side effects and pain in the right shoulder continue to be the main sources of discomfort. But all in all, still doing well in the scheme of things.
Several people requested information on donating blood and platelets. You can find everything you need to know atwww.mdanderson.org/bloodbank or by calling (713) 792-7777.
However some quick points:
-For Gail to get credit for someone giving on her behalf (give them Gail's name when filling out the paper work), you have to give at one of the three MDA blood centers; two are in the MD Anderson complex (the Main Hospital and the Mays Clinic) and the third is located at 2555 Holly Hall, 77054. Holly Hall is the best location to donate to avoid the parking issues (you can park at the front door).
-You can only donate blood every 2 months, but platelets can be donated every 2 days
-Donating whole blood takes about 30-45 minutes; platelets can take up to two hours
-You must eat within four hours of donating
-You must have a valid picture ID
-If you are donating platelets only, you must be off all Ibuprofen products, Aspirin, Motrin, Advil, Nuprin, Aleve and herbal products containing Garlique, Ginseng, Gingko or Ginger for 48 hours prior to donation
Thank you in advance if you are able to give. Your donating gives credit to Gail if/when she needs platelets; but as mentioned yesterday it can help many others as well.
Gastrointestinal side effects and pain in the right shoulder continue to be the main sources of discomfort. But all in all, still doing well in the scheme of things.
Several people requested information on donating blood and platelets. You can find everything you need to know atwww.mdanderson.org/bloodbank or by calling (713) 792-7777.
However some quick points:
-For Gail to get credit for someone giving on her behalf (give them Gail's name when filling out the paper work), you have to give at one of the three MDA blood centers; two are in the MD Anderson complex (the Main Hospital and the Mays Clinic) and the third is located at 2555 Holly Hall, 77054. Holly Hall is the best location to donate to avoid the parking issues (you can park at the front door).
-You can only donate blood every 2 months, but platelets can be donated every 2 days
-Donating whole blood takes about 30-45 minutes; platelets can take up to two hours
-You must eat within four hours of donating
-You must have a valid picture ID
-If you are donating platelets only, you must be off all Ibuprofen products, Aspirin, Motrin, Advil, Nuprin, Aleve and herbal products containing Garlique, Ginseng, Gingko or Ginger for 48 hours prior to donation
Thank you in advance if you are able to give. Your donating gives credit to Gail if/when she needs platelets; but as mentioned yesterday it can help many others as well.
Wednesday, April 23, 2014
Day 5
Wednesday, April 23
Everything continues to move along in the way that we were told from the outset... Gail continues to feel a bit lousy, her white cells are at 0 and today she needed platelets. All according to plan... so we guess that is a good thing.
We were told that although Gail needed platelets today, because platelets were at a crisis shortage in the hospital, they were being very selective on who received them. Because Jerry had stop by the Blood Center to donate them yesterday, Gail was able to receive hers. While patients at MDA Anderson have long-term needs for all blood components, platelet donors are especially valuable. Over 500 units of platelets are used daily by the patients at MDA.
If giving blood and/or platelets is something you are able to do, you would be helping out many, many grateful people.
Today, the Jewish Denominational Coordinator at MDA (a friend of one of Gail's good Speech Pathology friends) stopped by to visit. Not only did Hope give Gail a beautiful Jewish blessing, but they had a wonderful conversation on our two faiths. She has been involved in this ministry for many, many years and her knowledge and perspective were very enlightening.
Another day closer...
Everything continues to move along in the way that we were told from the outset... Gail continues to feel a bit lousy, her white cells are at 0 and today she needed platelets. All according to plan... so we guess that is a good thing.
We were told that although Gail needed platelets today, because platelets were at a crisis shortage in the hospital, they were being very selective on who received them. Because Jerry had stop by the Blood Center to donate them yesterday, Gail was able to receive hers. While patients at MDA Anderson have long-term needs for all blood components, platelet donors are especially valuable. Over 500 units of platelets are used daily by the patients at MDA.
If giving blood and/or platelets is something you are able to do, you would be helping out many, many grateful people.
Today, the Jewish Denominational Coordinator at MDA (a friend of one of Gail's good Speech Pathology friends) stopped by to visit. Not only did Hope give Gail a beautiful Jewish blessing, but they had a wonderful conversation on our two faiths. She has been involved in this ministry for many, many years and her knowledge and perspective were very enlightening.
Another day closer...
Monday, April 21, 2014
Day 3
Monday, April 21
We were told that starting Day 3 Gail could expect to start feeling the effects of the chemo and all the other medications that she would be receiving. They had that right! She did not sleep well last night and spent most of the day trying to be as still as she could, lest she become nauseas. Before Jerry left for the evening, she did feel good enough to get in her mile walk, slowly but surely.
Further blog updates to come, but we will report as there is more to share. Thanks again for all the prayers!
We were told that starting Day 3 Gail could expect to start feeling the effects of the chemo and all the other medications that she would be receiving. They had that right! She did not sleep well last night and spent most of the day trying to be as still as she could, lest she become nauseas. Before Jerry left for the evening, she did feel good enough to get in her mile walk, slowly but surely.
Further blog updates to come, but we will report as there is more to share. Thanks again for all the prayers!
Sunday, April 20, 2014
Day 2
Easter Sunday, April 20
Hope everyone had a very Happy Easter. It was a nice, calm day on the 17th floor. Gail enjoyed the day with Jerry and the boys coming to visit. At 2:00 the Transplant Floors, 17th and 18th held their Annual Easter Pole Parade. It was fun to see so many patients, with family members, enjoying themselves!
Picture 2 - The Pole Parade!
Hope everyone had a very Happy Easter. It was a nice, calm day on the 17th floor. Gail enjoyed the day with Jerry and the boys coming to visit. At 2:00 the Transplant Floors, 17th and 18th held their Annual Easter Pole Parade. It was fun to see so many patients, with family members, enjoying themselves!
Picture 1 - Gail resting prior to the Pole Parade
Picture 2 - The Pole Parade!
Saturday, April 19, 2014
Day 1
Fairly uneventful day today... No news is good news!
The photo is of Gail's nurse Nicole administering the T cells yesterday.
The photo is of Gail's nurse Nicole administering the T cells yesterday.
Friday, April 18, 2014
Day 0
Good Friday, April 18
It's done! The transplant/transfusion began at 11:00 this morning and was completed about 45 minutes later.Considering the magnitude of what the transplant means to Gail, the procedure itself was quite uneventful. Stephen, Nathan, Jerry and Gail's brother Mark all attended her "new birth". With the procedure, Gail will have all new cells in her bone marrow; her new blood type will go from O+ to A+.
A very, very special thank you to Gail's nurse for today, Nicole. She was in the room the entire time of the transplant, and answered many questions, from many different angles, from many different people. And how do you say thank you to someone who has given you the opportunity for a new life... that being Gail's donor. We all will be forever grateful!
Gail recovered very well from the rough day yesterday. When Jerry arrived at the hospital about 8:45, she had already started her mile walk. With the procedure, Gail was once again given Benadryl, which probably means a rather "sleepy" afternoon.
On the transplant floor, in addition to calling today Day 0, it is also considered the patient's new birthday. April 18th will long be remembered by all of us as a very special day... a new birthday for Gail celebrating the hope for a long, healthy life ahead and Good Friday, a reminder of the hope of eternal life.
Happy Birthday, Gail!
It's done! The transplant/transfusion began at 11:00 this morning and was completed about 45 minutes later.Considering the magnitude of what the transplant means to Gail, the procedure itself was quite uneventful. Stephen, Nathan, Jerry and Gail's brother Mark all attended her "new birth". With the procedure, Gail will have all new cells in her bone marrow; her new blood type will go from O+ to A+.
A very, very special thank you to Gail's nurse for today, Nicole. She was in the room the entire time of the transplant, and answered many questions, from many different angles, from many different people. And how do you say thank you to someone who has given you the opportunity for a new life... that being Gail's donor. We all will be forever grateful!
Gail recovered very well from the rough day yesterday. When Jerry arrived at the hospital about 8:45, she had already started her mile walk. With the procedure, Gail was once again given Benadryl, which probably means a rather "sleepy" afternoon.
On the transplant floor, in addition to calling today Day 0, it is also considered the patient's new birthday. April 18th will long be remembered by all of us as a very special day... a new birthday for Gail celebrating the hope for a long, healthy life ahead and Good Friday, a reminder of the hope of eternal life.
Happy Birthday, Gail!
Thursday, April 17, 2014
Day -1
Holy Thursday, April 17
In yesterday's blog we mentioned that the drug Gail would be taking today did not have any significant side effects. Boy, did we get that wrong!
Today was the hardest day Gail has had since the whole process began. She began the infusion of medication around 10:30 and began feeling bad almost immediately. It made her incredibly nauseous and feeling bad overall. She also developed hives all over her body; they are treated it with a medicine via her IV.
Around 4:00 she felt good enough to open her Pandora app to listen to her spiritual music... by 5:00 she was feeling even better and had a nice long visit with the nurse while having her bandage changed. Gail was also able to take a shorter, but brisk walk this evening.
Tomorrow is a really Big Day... Day 0 and Good Friday! Thanks to everyone for sending the nice cards. Gail really appreciates all the kind and uplifting words.
No picture today... per Gail's order!
Wednesday, April 16, 2014
Day -2
Wednesday, April 16
Today was day five of chemotherapy... Gail handled it well. Today's chemo is known to cause ulcers and sores in the mouth and the esophagus! Gail was told to keep chewing on ice chips and popsicles for about thirty minutes before and an hour after the infusion. As a precaution, ice chips will be a steady part of her diet for the next few days.
Gail was able to spend an hour in exercise and later walked a mile around the floor. She is also very thankful for the chaplains who come by daily to give her Communion. Sisters-in-law Pam and Diane stopped by to visit during lunch and late afternoon, respectively... she really enjoyed visiting with them.
We just learned that the medication taken tomorrow is not a chemotherapy, but a suicide gene or a monoclonal antibody. It seeks out the cancer cells (not all fast growing cells like today's chemo did) and destroys them....or so we hope! It doesn't have a lot of side effects. So that and the fact that tomorrow is Holy Thursday are two reasons to rejoice!
Below is a picture of Diane with Gail (Sorry Pam, I forgot to take your picture with Gail).
Today was day five of chemotherapy... Gail handled it well. Today's chemo is known to cause ulcers and sores in the mouth and the esophagus! Gail was told to keep chewing on ice chips and popsicles for about thirty minutes before and an hour after the infusion. As a precaution, ice chips will be a steady part of her diet for the next few days.
Gail was able to spend an hour in exercise and later walked a mile around the floor. She is also very thankful for the chaplains who come by daily to give her Communion. Sisters-in-law Pam and Diane stopped by to visit during lunch and late afternoon, respectively... she really enjoyed visiting with them.
We just learned that the medication taken tomorrow is not a chemotherapy, but a suicide gene or a monoclonal antibody. It seeks out the cancer cells (not all fast growing cells like today's chemo did) and destroys them....or so we hope! It doesn't have a lot of side effects. So that and the fact that tomorrow is Holy Thursday are two reasons to rejoice!
Below is a picture of Diane with Gail (Sorry Pam, I forgot to take your picture with Gail).
Tuesday, April 15, 2014
Day -3
Tuesday April 15
Today Gail finished the four-day treatment of her first chemotherapy drug. Tomorrow will be a different medicine known to cause mouth sores. She can't wait for that....NOT! She is starting to be a bit more tired, nauseous and has less and less of an appetite. In addition to the chemo, as we head towards Day 0, tomorrow they will be adding some type of anti-rejection medicine to her IV. Her nurse today, Sarabeth, has been great about answering questions!
Today Gail finished the four-day treatment of her first chemotherapy drug. Tomorrow will be a different medicine known to cause mouth sores. She can't wait for that....NOT! She is starting to be a bit more tired, nauseous and has less and less of an appetite. In addition to the chemo, as we head towards Day 0, tomorrow they will be adding some type of anti-rejection medicine to her IV. Her nurse today, Sarabeth, has been great about answering questions!
Fun facts to know and tell....
1. When asked why the nurses wear a special gown and double gloves when hanging the
chemo IV bags, Gail was told that it was because the chemo is so toxic that it would burn through their skin or mine if splashed out! Gail politely asked "Well then what is it doing to my veins and arteries?" The nurse stated that the veins are very sturdy and it doesn't harm them.
2. Most people don't lose their
hair until after engraphment...some will lose all, some partial, some none.
Gail was happy and excited today to be able to Skype with her brother Greg, who lives in a nursing home. Thanks so much to Aura (his caregiver) for handling the IPad and carrying on a conversation, all while getting Greg to give Gail a big smile and an attempted kiss.
Gail's good friend Becky stopped by this evening to visit. All in all, another good day.
Monday, April 14, 2014
Day -4
Monday, April 14
Gail continues to handle all the medications and the third day of chemo pretty well. Gastrointestinal issues have cropped up over the past two days, but we think we have it under control with a combination of medications! Gail is convinced that she must be on every medication class out there! She is a bit more tired, but still feels okay overall. She attended an exercise class that is held on M-W-F. She met a few more of the patients... and spent an hour working out to some energetic music. Anyone remember "Disco Fever"? Her MDS doctor, Dr. Garcia-Manero stopped by to visit while on the floor this morning. We are certainly grateful for all his work and encouragement to get her to this point!
Gail continues to handle all the medications and the third day of chemo pretty well. Gastrointestinal issues have cropped up over the past two days, but we think we have it under control with a combination of medications! Gail is convinced that she must be on every medication class out there! She is a bit more tired, but still feels okay overall. She attended an exercise class that is held on M-W-F. She met a few more of the patients... and spent an hour working out to some energetic music. Anyone remember "Disco Fever"? Her MDS doctor, Dr. Garcia-Manero stopped by to visit while on the floor this morning. We are certainly grateful for all his work and encouragement to get her to this point!
Sunday, April 13, 2014
Day -5
Sunday, April 13
Second day of chemo... a rather ordinary day, which is a good thing. Jerry and Nathan were able to attend the 10:00 am Palm Sunday Mass in the hospital chapel. Gail was not allowed to leave the area, so she watched the service on the television. She also got in her mile lap with her new best buddy, the IV Pole (accompanying her at the computer below).
Saturday, April 12, 2014
Day -6
Saturday, April 12 was the first full day at MD Anderson. While Friday was Day -7, admission did not happen until almost 10:00 pm; the hospital called at 8:30 pm to say her room was ready. The 17th and 18th floors at MDA are designated for stem cell transplant patients and unoccupied rooms are a rarity... truly an amazing place!
By the time the evening nurse Melvin had gone over the upcoming schedule, answered all questions and took Gail's vitals, it was approaching midnight. We won't disclose what her fighting weight will be entering this ring:)
Day -6 got underway around 10:00 am with her first of the 6 days of chemo treatment; she handled that very well. The top three "must do's" during her stay will be to take 3 walks/day, rinse mouth with salt and soda every 2 hours and do breathing exercises in a spirometer every 2 hours. Sixteen laps around the nursing station is equivalent to a mile; Gail walked about two miles today!
The staff in Gail's area are very professional and equally friendly. Her nurse today, Kelly, was wonderful. She also had the opportunity to receive Communion from the hospital chaplain. All in all, a really good day! And she was equally happy to hear that Stephen had a successful first leg to La Grange in the MS 150.
Friday, April 11, 2014
Day -7
The day count is officially on. Transplant day is also known as Day 0, the day when the whole immune system is transplanted. The count day we look forward to is Day +100, when patients are released to "go home". Living in Houston, "go home" does not really apply; it applies more to those who come to MD Anderson from afar and are now able to leave the 25 miles or 30 minutes distance from MDA. For Gail it means she can once again venture outside Houston.
Thursday, April 10, 2014
Hospital Admission Scheduled for Tomorrow, Friday April 11th
Well I hesitated to post another false report, but after seeing my infectious disease doctor on Tuesday I got the green light to go to stem cell transplant. So my hospital admission has been scheduled for tomorrow, Friday April 11th. I had my central line inserted today.....not something you want to do on a daily basis...and that is how they will give me my chemo, blood products and medications for the near future. My stem cell transplant should occur on Good Friday, April 18th. I guess you could say I'm walking the way of the cross with Christ in a more personal way this Easter season! I can feel the joy at the other end of the tunnel!!
I feel fantastic, health wise, and emotionally I am excited and scared at the same time.....but ready to get it over with. The unknown is always the worst part of making it through a difficult situation.
I am so blessed to have all the support of my family and friends who are praying for me and bringing meals to my sweet husband and Nathan while I'm out of commision. I also have my dear friend Becky Newman who is taking care of purchasing all the medical supplies for my brother Greg. She will be delivering them to the nursing home weekly. I have Aura and Naty and Stanna taking care of Greg .....and this team cannot be beat!!! They are so loving and fantastic with Greg!! The nursing home staff has been very supportive as well! I feel so thankful to everyone.
Jerry doesn't know how to blog, so give him some time to catch on....if I can learn, he certainly can!
So keep following my blog if your bored at night!!! haha!
All is shaping into place!
I feel fantastic, health wise, and emotionally I am excited and scared at the same time.....but ready to get it over with. The unknown is always the worst part of making it through a difficult situation.
I am so blessed to have all the support of my family and friends who are praying for me and bringing meals to my sweet husband and Nathan while I'm out of commision. I also have my dear friend Becky Newman who is taking care of purchasing all the medical supplies for my brother Greg. She will be delivering them to the nursing home weekly. I have Aura and Naty and Stanna taking care of Greg .....and this team cannot be beat!!! They are so loving and fantastic with Greg!! The nursing home staff has been very supportive as well! I feel so thankful to everyone.
Jerry doesn't know how to blog, so give him some time to catch on....if I can learn, he certainly can!
So keep following my blog if your bored at night!!! haha!
All is shaping into place!
Monday, April 7, 2014
A thoughtful gesture from AGC Houston!!
I'm a few months late on this but I just would like to acknowledge and thank several of the office staff at AGC Houston for teaming up with the Be The Match Foundation during the holidays to encourage people to become donors. It's never too late to be a bone marrow/stem cell donor!
Below is a copy of the Jan.7th newsletter promoting the Be The Match Foundation.
Below is a copy of the Jan.7th newsletter promoting the Be The Match Foundation.
Latest Update:
I met with Dr. Champlin today. The chest CT scan still shows some areas that could be scar tissue or the remains of the infection. He wants me to see Dr. Chemaly, the infectious disease doctor, tomorrow morning. He will be the one to say if I have the ok to go to transplant or if I need to be treated with a different antibiotic. Waiting is the name of the game!
Subscribe to:
Posts (Atom)