Hello to All,
The last time I sent out an update was Monday and I was just going into the hospital for a few tests. Wow, what a roller coaster ride since then.
Tuesday noon was the last time I had anything to eat until Thursday evening, boy was I hungry. They did this in order to prep me for the Upper & Lower GI (Gastrointestinal or Endoscopy / Colonoscopy) that they were going to do on Wednesday 7 AM. In addition - through late Wednesday afternoon they gave me:
Two units of whole blood
4 units of platelets (one was a double)
6 units of potassium
1 gallon of lemonade flavored clean you out juice
plus numerous liters of fluid so I didn't become dehydrated
Late Wednesday, 5 PM, they completed the Upper & Lower GI - Gene has souvenir color photos. After the procedure the Gastrointestinal Doctor talked to us about what he saw - very preliminary of course. While in side, he took several biopsy / tissue samples - no word back on these yet. To date no one has come back to us with anything conclusive. However, due to some of the findings that the GI Doctor thought he saw, I got to have a CAT scan of my liver and Kidneys on Thursday evening - they prep you by, not letting you eat and shooting this dye into your veins. Praise God, those test results are back and they found nothing - trust me this is good news.
It is now Friday afternoon, I still have diarrhea (going on 10 days now) with no idea when I get to go home (my biggest longing after being fully healed). To be honest, I don't really feel good enough to be at home right now. They are trying to arrange one more test, they tell me it is painless, I will wait and see. They want to pierce the side of my neck and enter my juggler vein with this tube like knife device. From there they will cruse down the inside of my body, take a right at my liver and then snip off a tissue sample / biopsy. I can hardly wait. Unfortunately, they don't think that they can get this scheduled until Monday. Did I mention that until I know for certain, they don't want me to eat anything right now.
Right now, I feel as bad as I did on Monday. Good news, the kids came an visited me in the hospital. I miss them Soooooooooooooo much!!!!!!!! It was really good to see, touch and hug them.
To be honest, I am getting more and more discouraged, somewhat scared (when will this end and how) and very very tired.
Please pray for the following:
Praise to / for all of you Church families, friends , Gene's work pals both Kerry and Army National Guard, who have stood or kneeled by my side for the past 17 months of this journey, stepping up to fill any need I may have and beyond.
Praise for my children who have continued to love me, help me and still have as normal of childhood as possible.
Praise for the medical staff who haven't given up on me yet - I have seen it happen to others.
Praise for the experience. I wouldn't wish it on anyone else, but it has really challenged / strengthened my Christian values.
Pray that what ever happens that first and foremost - To God be the Glory.
Pray to God that I would be healed now with / without the Doctors intervention.
Pray for Gene and the Kids - that they will continue to be strong - make progress in school and work and stay positive for both themselves and me.
Pray for me that I will not become weak, mentally and lose hope.
God Bless and Love in Christ
Cheryl
Friday, February 23, 2007
Monday, February 19, 2007
19 Feb 2007
To All,
Just a quick update to let you all know what is going on. As most of you are aware, the past weeks have really been event free. Twice a week Gene has been taking me to UW Madison clinic for Platelet transfusions with the occasional Whole Blood transfusion thrown in the mix.
I had asked you all to pray that my cell counts would start to increase and stabilize and this past week God has answered your prayers.
My platelet's are stabilizing in the double digits, for the most part between 10 - 13 thousand, still a long way from normal 160,000 - 370,000, but a major improvement for me!!!
I am down to only needing Red blood about every four weeks!!!
My white blood cells are in the 40,000 range where normal runs from as low as 38,000 to as high as 105,000. This is great.
Now comes the really tough part and I need your prayers for this one. Here goes, this past week I have been suffering from extreme abdominal pain (mostly my stomach), starting about Tuesday evening. I have experienced both vomiting and diarrhea, on Thursday the doctor was considering putting me in the hospital (she did give 2 1/2 liters of fluid), I said not to worry I will be better by Monday.
It has now been six days with the aforementioned symptoms and I am weak, my body is sore and dehydrated. My wonderful doctor has put me back in the hospital until I get stabilized and/or they figure out the cause. On Thursday they took enough various samples to confirm it was not viral. They believe it is the Graft Versus Host (GVH) disease that they had been hoping to see more of. They need to do an endoscopy and an colonoscopy to confirm. Once confirmed they will start me on some more medicine to clear it up.
One small problem, they can't perform the above procedures, so they say, until my platelets get up to at least 50 (or 50,000 - we just abbreviate). My platelets haven't been that high in over a year.
Please pray for guidance for the doctors.
Please pray that something will work out for them to perform their tests.
Pray that this hospital stay is SHORT!!!! I just want to be home.
Pray that Gene and the kids get along as Gene travels between home and the hospital.
My room phone number is (608) ###-#### and here room number is B6/###. We will update you as we know more.
God Bless and thank you for your much needed prayers.
Cheryl Cummins
Just a quick update to let you all know what is going on. As most of you are aware, the past weeks have really been event free. Twice a week Gene has been taking me to UW Madison clinic for Platelet transfusions with the occasional Whole Blood transfusion thrown in the mix.
I had asked you all to pray that my cell counts would start to increase and stabilize and this past week God has answered your prayers.
My platelet's are stabilizing in the double digits, for the most part between 10 - 13 thousand, still a long way from normal 160,000 - 370,000, but a major improvement for me!!!
I am down to only needing Red blood about every four weeks!!!
My white blood cells are in the 40,000 range where normal runs from as low as 38,000 to as high as 105,000. This is great.
Now comes the really tough part and I need your prayers for this one. Here goes, this past week I have been suffering from extreme abdominal pain (mostly my stomach), starting about Tuesday evening. I have experienced both vomiting and diarrhea, on Thursday the doctor was considering putting me in the hospital (she did give 2 1/2 liters of fluid), I said not to worry I will be better by Monday.
It has now been six days with the aforementioned symptoms and I am weak, my body is sore and dehydrated. My wonderful doctor has put me back in the hospital until I get stabilized and/or they figure out the cause. On Thursday they took enough various samples to confirm it was not viral. They believe it is the Graft Versus Host (GVH) disease that they had been hoping to see more of. They need to do an endoscopy and an colonoscopy to confirm. Once confirmed they will start me on some more medicine to clear it up.
One small problem, they can't perform the above procedures, so they say, until my platelets get up to at least 50 (or 50,000 - we just abbreviate). My platelets haven't been that high in over a year.
Please pray for guidance for the doctors.
Please pray that something will work out for them to perform their tests.
Pray that this hospital stay is SHORT!!!! I just want to be home.
Pray that Gene and the kids get along as Gene travels between home and the hospital.
My room phone number is (608) ###-#### and here room number is B6/###. We will update you as we know more.
God Bless and thank you for your much needed prayers.
Cheryl Cummins
Friday, February 9, 2007
9 Feb 2007
Hello everyone,
It is a bit like Ground Hog's Day the movie here. Each day seems the same at clinic, get more platelets.
We returned from Minneapolis Wed. THe Dr. there confirms what our Dr. here says. There is some cell growth, it is just slow, he said I am the tortoise and the hare was killed by the previous treatments I received. He said he wished he would have given me more of Sandy's cells but since he didn't it isn't worth it now to have the platelet level drop to 0 for at least 21 days, I am willing to wait. We go back up there in three months.
Meanwhile the Dr here said if something significant doesn't happen with the cells in 30 days she wants to pursue other options, like having another DLI in Minneapolis. We are praying there will be significant cell growth in the next month. Only God knows when or if that is going to happen. WE are so thankful to have a bone marrow biopsy clear of leukemia.
Hurray the sun is shinning! It makes you feel warmer. I am content to stay inside. It is just tooo cold here for me. It was actually 1* this morning. Well, that is the story as I know it.
* Pray that the cells start producing
* Pray for endurance, we are growing weary
* Pray when the cells produce there will be no leukemia
*Pray for Emily and Michael, they have been through so much!
* Pray for strength for Gene
Thanks for Praying,
Cheryl
It is a bit like Ground Hog's Day the movie here. Each day seems the same at clinic, get more platelets.
We returned from Minneapolis Wed. THe Dr. there confirms what our Dr. here says. There is some cell growth, it is just slow, he said I am the tortoise and the hare was killed by the previous treatments I received. He said he wished he would have given me more of Sandy's cells but since he didn't it isn't worth it now to have the platelet level drop to 0 for at least 21 days, I am willing to wait. We go back up there in three months.
Meanwhile the Dr here said if something significant doesn't happen with the cells in 30 days she wants to pursue other options, like having another DLI in Minneapolis. We are praying there will be significant cell growth in the next month. Only God knows when or if that is going to happen. WE are so thankful to have a bone marrow biopsy clear of leukemia.
Hurray the sun is shinning! It makes you feel warmer. I am content to stay inside. It is just tooo cold here for me. It was actually 1* this morning. Well, that is the story as I know it.
* Pray that the cells start producing
* Pray for endurance, we are growing weary
* Pray when the cells produce there will be no leukemia
*Pray for Emily and Michael, they have been through so much!
* Pray for strength for Gene
Thanks for Praying,
Cheryl
Friday, February 2, 2007
2 Feb 2007
Greetings and Salutations ( I just watched Charlotte's Web)
I had a bone marrow biopsy Monday in Madison. It was supposed to be done in Minneapolis, my experiences there with the biopsy have not been good, so my Doctor called to see if she could do it and send the results. I don't even have a bruise! She is amazing.
We got some of the results yesterday form the biopsy. My white blood cells are just starting to produce, there are some baby red cells that are trying to grow, very few platelets. Good news! My body has started producing, just a slow process. The best part is there are no leukemia cells present.
The DNA results aren't in yet. The goal is that I will have 100% of my sister's DNA, YIKES! where did I go? Just kidding she had been such a support for us during all of this.
I am still tired. I have the energy of a wet noodle. The Doctor said that is to be expected given the way my blood is producing. In the marrow there are places that are blank, they are supposed to be packed with blood cells and fat. Mine have patches like that, but I am confident that will change and I will be energized soon.
My brother is running a triathlon to raise money for the lymphoma, leukemia society, He has never done anything like this before-maybe he is a little loopy? anyway, if any of you are interested in watching his progress or donating to the cause let me know I can send you the e-mail about it. If you want to check out his web sight you can copy the address below and paste it into your browser "Address" line and hit enter. http://www.active.com/donate/tntne/tntneCHofroc
We will be going back to Minneapolis. We leave Mon. stop in Madison for platelets then on to MN. Our appointment is Tues. We will return Wed.
Please continue to pray:
*Pray for safe travel as we go to MN and as we go to Madison twice a week.
*Pray that my blood cells continue to produce
*Pray for endurance. This has gone on a long time , we are all growing weary
*Pray for Michael and Emily
*Pray for Gene as he juggles work, the guards and me-I'm a little heavy to juggle
Thanks for Praying
Love in Christ
Cheryl
I had a bone marrow biopsy Monday in Madison. It was supposed to be done in Minneapolis, my experiences there with the biopsy have not been good, so my Doctor called to see if she could do it and send the results. I don't even have a bruise! She is amazing.
We got some of the results yesterday form the biopsy. My white blood cells are just starting to produce, there are some baby red cells that are trying to grow, very few platelets. Good news! My body has started producing, just a slow process. The best part is there are no leukemia cells present.
The DNA results aren't in yet. The goal is that I will have 100% of my sister's DNA, YIKES! where did I go? Just kidding she had been such a support for us during all of this.
I am still tired. I have the energy of a wet noodle. The Doctor said that is to be expected given the way my blood is producing. In the marrow there are places that are blank, they are supposed to be packed with blood cells and fat. Mine have patches like that, but I am confident that will change and I will be energized soon.
My brother is running a triathlon to raise money for the lymphoma, leukemia society, He has never done anything like this before-maybe he is a little loopy? anyway, if any of you are interested in watching his progress or donating to the cause let me know I can send you the e-mail about it. If you want to check out his web sight you can copy the address below and paste it into your browser "Address" line and hit enter. http://www.active.com/donate/tntne/tntneCHofroc
We will be going back to Minneapolis. We leave Mon. stop in Madison for platelets then on to MN. Our appointment is Tues. We will return Wed.
Please continue to pray:
*Pray for safe travel as we go to MN and as we go to Madison twice a week.
*Pray that my blood cells continue to produce
*Pray for endurance. This has gone on a long time , we are all growing weary
*Pray for Michael and Emily
*Pray for Gene as he juggles work, the guards and me-I'm a little heavy to juggle
Thanks for Praying
Love in Christ
Cheryl
Friday, January 12, 2007
12 Jan 2007
Hello all,
Sorry this has been so long in coming. I have been feeling really tired. It is from taking the steroids and now tapering to almost taking none.
We had a great Christmas. We stayed at the lighthouse on Lake Michigan. My parents were here. I wasn't feeling well Christmas Day so Mom and Gene fixed the turkey. Can you believe they did it without me? It is a hard lesson to learn, but I seem to need to learn it over and over again. Yes, things can get done without me, maybe not like I would do it but done just the same.
New Years we had a quiet night at home watching movies with the kids. New Year's day we headed to Minneapolis for one of the scheduled return visits. I was supposed to have a bone marrow biopsy but somehow didn't get scheduled so they did it the 3rd before we came home. Not an ideal situation since my plateletts have not recovered on their own. It was by far the worst biopsy I have had. She tried 3 times, bent one needle. Then tried 8 times for the aspirate, and bent another needle. OUCH! okay enough of the whining. The DR. called the next day and said the marrow looks good, no leukemia blasts! Praise the Lord!
Now the question is why hasn't my marrow started producing the blood? One theory is that I had so much chemo-therapy and it was so strong that it will take awhile to regenerate. Another theory is that it damaged some on the cell producing areas. Another theory is that it is producing the cells just my body is eating them up. The last is being tested, they give me gama-globulin- which takes 4 hours- and then my platelet count is supposed to go up. I had a reaction as they were giving it to me, so more drugs, and then they continued the infusion, but my platelet count didn't go up significantly. We are going to try again on Thurs. Jan.18th.
Meanwhile we are going to Madison two to three times a week for platelet infusions and about once every two weeks I get whole blood. Of course there is still the problem of getting the specially matched plateletts form the donors, they are working on ordering them ahead of time so the Red Cross had plenty of time to find donors. THANKS TO ALL WHO ARE DONORS! You are so vital to many people's health.
I am thankful for everyday that I have with my family but frankly I am tired of being sick and tired of being tired.
The Dr.s are contemplating giving me more stem cells, to help boost the production of blood cells. That means going to MN again. I don't know for how long it would be. My opinion is to just wait and let them have a chance to produce on their own. It isn't unusual for it to take 100 days. We are at day 73. I will do whatever it takes though.
For those amateurs in the group, believe me I know more about blood than I ever wanted to know, Plateletts are the part of the blood that makes it clot. So when they are low I bruise easily and I have nose bleeds, I have to be careful not to get cut anywhere.
We have to go back to MN for a 3 month check-up the end of the month or first part on next month, another biopsy is scheduled.
Prayer requests:
* Pray for blood production by my own bone marrow
* Pray for continued good biopsy reports
* Pray for the kids, as this wears on
* Pray for Gene as he tries to balance work, guards, and being the nurse
* Pray for safe travel to MN
To GOD be the Glory
Love
Cheryl
Sorry this has been so long in coming. I have been feeling really tired. It is from taking the steroids and now tapering to almost taking none.
We had a great Christmas. We stayed at the lighthouse on Lake Michigan. My parents were here. I wasn't feeling well Christmas Day so Mom and Gene fixed the turkey. Can you believe they did it without me? It is a hard lesson to learn, but I seem to need to learn it over and over again. Yes, things can get done without me, maybe not like I would do it but done just the same.
New Years we had a quiet night at home watching movies with the kids. New Year's day we headed to Minneapolis for one of the scheduled return visits. I was supposed to have a bone marrow biopsy but somehow didn't get scheduled so they did it the 3rd before we came home. Not an ideal situation since my plateletts have not recovered on their own. It was by far the worst biopsy I have had. She tried 3 times, bent one needle. Then tried 8 times for the aspirate, and bent another needle. OUCH! okay enough of the whining. The DR. called the next day and said the marrow looks good, no leukemia blasts! Praise the Lord!
Now the question is why hasn't my marrow started producing the blood? One theory is that I had so much chemo-therapy and it was so strong that it will take awhile to regenerate. Another theory is that it damaged some on the cell producing areas. Another theory is that it is producing the cells just my body is eating them up. The last is being tested, they give me gama-globulin- which takes 4 hours- and then my platelet count is supposed to go up. I had a reaction as they were giving it to me, so more drugs, and then they continued the infusion, but my platelet count didn't go up significantly. We are going to try again on Thurs. Jan.18th.
Meanwhile we are going to Madison two to three times a week for platelet infusions and about once every two weeks I get whole blood. Of course there is still the problem of getting the specially matched plateletts form the donors, they are working on ordering them ahead of time so the Red Cross had plenty of time to find donors. THANKS TO ALL WHO ARE DONORS! You are so vital to many people's health.
I am thankful for everyday that I have with my family but frankly I am tired of being sick and tired of being tired.
The Dr.s are contemplating giving me more stem cells, to help boost the production of blood cells. That means going to MN again. I don't know for how long it would be. My opinion is to just wait and let them have a chance to produce on their own. It isn't unusual for it to take 100 days. We are at day 73. I will do whatever it takes though.
For those amateurs in the group, believe me I know more about blood than I ever wanted to know, Plateletts are the part of the blood that makes it clot. So when they are low I bruise easily and I have nose bleeds, I have to be careful not to get cut anywhere.
We have to go back to MN for a 3 month check-up the end of the month or first part on next month, another biopsy is scheduled.
Prayer requests:
* Pray for blood production by my own bone marrow
* Pray for continued good biopsy reports
* Pray for the kids, as this wears on
* Pray for Gene as he tries to balance work, guards, and being the nurse
* Pray for safe travel to MN
To GOD be the Glory
Love
Cheryl
Tuesday, December 12, 2006
12 Dec 2006
To ALL:
I have been home a little over a week and it is great. I feel so much better just being home with my children!
Things are progressing as the doctors would want, they performed a DNA test last week to determine the percentage of my DNA versus my sisters (THE DONOR) DNA in my body. On Monday we got the test results back and the results were greater than 95% was my sisters DNA, praise God!! Even thought we have been here before, I am still excited about this result.
My body has not started producing it's own cells yet, as a result of all of the chemotherapy, and as such I go to Madison clinic three times a week for transfusions. I get platelets every time and about every third time blood. It seems that it is taking longer and longer for my body to recover. My immune system is still compromised and with low platelets I bruise easy and still get bloody noses. I just have to be very careful what I do at home and else where.
I am excited to be home with my family for Christmas!! I have started my own therapy by making holiday treats - candy, cookies ect. I am just thankful to be able to do this. I am also thankful to be able to get out and go to church on Sunday, even though I have to sit in the balcony and wear my mask. It is great to get to see all of you.
I am open to having visitors at the house, but I must ask that if you want to come over please call first and if you are sick or been around those who are sick please wait until all is well. My bodies resistance is still very low.
I know that there is no way I can truly thank all of you for the help and prayers that you have provided for me and my family, but I do want to express my deepest thank you. I would not be as far as I am today with out all of your wonderful assistance.
For those of you who are still praying for my family and I please continue with the following requests:
* Praise to God for letting me come home to be with my children!
* Praise to God for keeping me out of the hospital more than I have been!
* Praise to God for all of you who continue to support me in one form or another!
* Praise to God for the healing that has already taken place!
* Praise to God for the strength he provides me daily to continue on!
* Pray that my body would recover enough that I won't need to go to Madison as often, that I will begin to produce my own White, Red blood cells and platelets.
* Pray that God will continue to provide me with strength to face each day with a renewed will to continue the fight and believe in a cure.
* Pray for my family as I know it has been difficult for them as well.
* Pray that through all of this I can be the witness that God would desire no matter the outcome.
I hope and pray that all of you will have a glorious Christmas celebration, remembering the reason, Christ our Lord.
Love in Christ
Cheryl and Family
I have been home a little over a week and it is great. I feel so much better just being home with my children!
Things are progressing as the doctors would want, they performed a DNA test last week to determine the percentage of my DNA versus my sisters (THE DONOR) DNA in my body. On Monday we got the test results back and the results were greater than 95% was my sisters DNA, praise God!! Even thought we have been here before, I am still excited about this result.
My body has not started producing it's own cells yet, as a result of all of the chemotherapy, and as such I go to Madison clinic three times a week for transfusions. I get platelets every time and about every third time blood. It seems that it is taking longer and longer for my body to recover. My immune system is still compromised and with low platelets I bruise easy and still get bloody noses. I just have to be very careful what I do at home and else where.
I am excited to be home with my family for Christmas!! I have started my own therapy by making holiday treats - candy, cookies ect. I am just thankful to be able to do this. I am also thankful to be able to get out and go to church on Sunday, even though I have to sit in the balcony and wear my mask. It is great to get to see all of you.
I am open to having visitors at the house, but I must ask that if you want to come over please call first and if you are sick or been around those who are sick please wait until all is well. My bodies resistance is still very low.
I know that there is no way I can truly thank all of you for the help and prayers that you have provided for me and my family, but I do want to express my deepest thank you. I would not be as far as I am today with out all of your wonderful assistance.
For those of you who are still praying for my family and I please continue with the following requests:
* Praise to God for letting me come home to be with my children!
* Praise to God for keeping me out of the hospital more than I have been!
* Praise to God for all of you who continue to support me in one form or another!
* Praise to God for the healing that has already taken place!
* Praise to God for the strength he provides me daily to continue on!
* Pray that my body would recover enough that I won't need to go to Madison as often, that I will begin to produce my own White, Red blood cells and platelets.
* Pray that God will continue to provide me with strength to face each day with a renewed will to continue the fight and believe in a cure.
* Pray for my family as I know it has been difficult for them as well.
* Pray that through all of this I can be the witness that God would desire no matter the outcome.
I hope and pray that all of you will have a glorious Christmas celebration, remembering the reason, Christ our Lord.
Love in Christ
Cheryl and Family
Friday, December 1, 2006
1 Dec 2006
To ALL;
Praise GOD!!! After 41 days of living in Minneapolis away from our family and friends, I GET TO COME HOME!!!!!!!
My visit to the clinic today was exciting. The doctor said that he personally looked at the Bone Marrow biopsy sample and liked what he saw, a lot of new cell growth. He said that he was confident that my body would start building blood cells / platelets on its own very soon.
My care is being transferred back to Madison for the daily / weekly clinic visits (timing still to be determined). My Minnesota doctor requires me to return on my two / three / six month and one year anniversary. As long as I get to live at home with my children I can handle coming back here on those times.
Saturday morning Gene and I are packing up and driving back to South Beloit to my children and friends.
Please pray for safe travel and continued healing. I look forward to seeing many of you again.
Love in Christ
Cheryl & Family
Praise GOD!!! After 41 days of living in Minneapolis away from our family and friends, I GET TO COME HOME!!!!!!!
My visit to the clinic today was exciting. The doctor said that he personally looked at the Bone Marrow biopsy sample and liked what he saw, a lot of new cell growth. He said that he was confident that my body would start building blood cells / platelets on its own very soon.
My care is being transferred back to Madison for the daily / weekly clinic visits (timing still to be determined). My Minnesota doctor requires me to return on my two / three / six month and one year anniversary. As long as I get to live at home with my children I can handle coming back here on those times.
Saturday morning Gene and I are packing up and driving back to South Beloit to my children and friends.
Please pray for safe travel and continued healing. I look forward to seeing many of you again.
Love in Christ
Cheryl & Family
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