Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
tarheelchick
Hi friends,
I have been reading so many encouraging posts from all of you lately! I thought some of you might enjoy reading the post that my daughter made on caringbridge about Jay a week ago when they reached the one year "mile-stone" of his journey. I personally found it very uplifting and I hope you do too. Its a bit long, but well worth the read. I think you will be able to see why I am so very proud of them.
--Tina
One Year
Written Apr 27, 2013 12:20pm
One year ago today our lives changed forever in a small doctor's office in Mount Airy when we received the diagnosis that Jay had leukemia - cancer in his blood. In a way it feels like just yesterday. We were so scared...so shocked... so completely unaware of what was to come...of what we were dealing with. On the other hand it feels like so long ago. We are so different now. So much has happened...so many ups and downs, triumphs and setbacks, joys and sadness. By the numbers we've seen it all....
Jay has spent around 160 nights in the hospital (including Mother's Day, Christmas Eve, Christmas morning, New Year's Eve, Valentine's Day, and Jay's Birthday).
3 Hickman catheters, 3 PIC lines, a handful of IV lines, and plenty of needle pokes.
Probably at least 50 different types of pills - and sometimes taking up to 18-20 pills a day (which is a big feat for someone who used to have a hard time with one aspirin!).
At least 20-30 blood transfusions and probably 10-20 platelet transfusions. (thank you blood donors!).
1 bone marrow transplant, 2 bone marrow donors (thank you Joey (Jay's brother) and our mystery donor!).
8 bone marrow biopsies (what a trooper!).
6 week-long chemotherapy treatments and a handful of full body radiation.
35-40 pounds lost for Jay...(more than a few gained for the rest of us).
Countless doctors appointments, lab work, clinic visits, xrays, CT scans, EKGs, echocardiograms, pulmonary function tests, and even one bronchoscopy.
Our lives now include lots of hand washing, hand sanitizer, masks, robes, rubber gloves, and avoiding crowds & germs.
I've put a few thousand miles on our cars with the back and forth driving.
Those are just a few of the many many new things we have experienced this year that have been, at times, really difficult. But in all that we have also seen SO.MANY.GOOD.THINGS! Check out these numbers...
Hundreds of cards, pictures, and scriptures that have been sent by so many of you, our friends and family.
Dozens of packages.... which made for an absurd amount of snacks, goodies, books, entertainment and laughs.
So many of you have brought breakfast, lunch and dinner and plenty of other food!! We have never gone hungry!
You've held fundraisers, made bracelets and tshirts, and sent videos. There have been blood drives and bone marrow drives - you have literally given of your own bodies to us and to so many in need.
Jay and I have never gone on so many walks together and had so much real and honest conversation.
We got to celebrate our 4th anniversary together, outside of the hospital like a normal couple. Our marriage is the strongest its ever been.
I wish I could count the number of visitors we've had. We've had friends from high school & college. We've had friends from out of town, out of state, out of the country. People have literally bought plan tickets to come visit. We've had visits from people we've never met who just want to stop by and encourage us.
We've gotten to spend time with people we haven't seen in years. We have friends who visit us as often as they can (and for many of them, it is not just a short trip to get here).
We've seen God's faithfulness in providing us with brilliant doctors, nurses, PAs, NAs, custodians, food service people and SO many different people who work here at Duke. It is a gift to feel like the people you encounter daily are at work FOR you and that they don't just see you as "work to be done" but as patients and real people, even friends, to take care of.
The fact that I still have a job and that I am able to continue doing full time ministry with high school kids, something that I love, all while trying to be with Jay is nothing short of God's grace. My bosses and my coworkers and the ministry of Young Life have shown me more about what it means to love someone than I can even begin to describe.
Thank the Lord too for good health insurance. I will not go into detail, but wow, thank you Lord.
Finally, I can't even begin to put a number or value on the power of prayer that has been demonstrated on our behalf this year. I don't know how many times this year we have heard people say, I am praying for you, my church is praying for you, my small group, my bible study, my family, my kids... you name it, we've heard it. People are praying all over this state, country, and world. Literally. Prayers from the mouths of babes, prayers in different languages, prayers from those who pray often, prayers from those who aren't sure how to pray. Prayers from people who know us very well. Prayers from people who have never and will never know us at all. Prayers from churches of all denominations, prayers from folks of all ages and races. It blows me away that there are people who literally pray for us on a daily, sometimes hourly basis. I cannot imagine the thousands and thousands of words of intercession for us. Our names have been uttered boldly, desperately, honestly, pleadingly, joyfully to the King of Kings by so many. The noise you all must be making in heaven on our behalf is deafening, but at the same time it is the most beautiful song. We have never known the power of prayer so much as we have this year and my words fail me for the gratitude we have. We covet your prayers and we truthfully believe you have helped sustain us this year. Thank you, thank you, thank you so much for praying with us and for us.
I have been reading so many encouraging posts from all of you lately! I thought some of you might enjoy reading the post that my daughter made on caringbridge about Jay a week ago when they reached the one year "mile-stone" of his journey. I personally found it very uplifting and I hope you do too. Its a bit long, but well worth the read. I think you will be able to see why I am so very proud of them.
--Tina
One Year
Written Apr 27, 2013 12:20pm
One year ago today our lives changed forever in a small doctor's office in Mount Airy when we received the diagnosis that Jay had leukemia - cancer in his blood. In a way it feels like just yesterday. We were so scared...so shocked... so completely unaware of what was to come...of what we were dealing with. On the other hand it feels like so long ago. We are so different now. So much has happened...so many ups and downs, triumphs and setbacks, joys and sadness. By the numbers we've seen it all....
Jay has spent around 160 nights in the hospital (including Mother's Day, Christmas Eve, Christmas morning, New Year's Eve, Valentine's Day, and Jay's Birthday).
3 Hickman catheters, 3 PIC lines, a handful of IV lines, and plenty of needle pokes.
Probably at least 50 different types of pills - and sometimes taking up to 18-20 pills a day (which is a big feat for someone who used to have a hard time with one aspirin!).
At least 20-30 blood transfusions and probably 10-20 platelet transfusions. (thank you blood donors!).
1 bone marrow transplant, 2 bone marrow donors (thank you Joey (Jay's brother) and our mystery donor!).
8 bone marrow biopsies (what a trooper!).
6 week-long chemotherapy treatments and a handful of full body radiation.
35-40 pounds lost for Jay...(more than a few gained for the rest of us).
Countless doctors appointments, lab work, clinic visits, xrays, CT scans, EKGs, echocardiograms, pulmonary function tests, and even one bronchoscopy.
Our lives now include lots of hand washing, hand sanitizer, masks, robes, rubber gloves, and avoiding crowds & germs.
I've put a few thousand miles on our cars with the back and forth driving.
Those are just a few of the many many new things we have experienced this year that have been, at times, really difficult. But in all that we have also seen SO.MANY.GOOD.THINGS! Check out these numbers...
Hundreds of cards, pictures, and scriptures that have been sent by so many of you, our friends and family.
Dozens of packages.... which made for an absurd amount of snacks, goodies, books, entertainment and laughs.
So many of you have brought breakfast, lunch and dinner and plenty of other food!! We have never gone hungry!
You've held fundraisers, made bracelets and tshirts, and sent videos. There have been blood drives and bone marrow drives - you have literally given of your own bodies to us and to so many in need.
Jay and I have never gone on so many walks together and had so much real and honest conversation.
We got to celebrate our 4th anniversary together, outside of the hospital like a normal couple. Our marriage is the strongest its ever been.
I wish I could count the number of visitors we've had. We've had friends from high school & college. We've had friends from out of town, out of state, out of the country. People have literally bought plan tickets to come visit. We've had visits from people we've never met who just want to stop by and encourage us.
We've gotten to spend time with people we haven't seen in years. We have friends who visit us as often as they can (and for many of them, it is not just a short trip to get here).
We've seen God's faithfulness in providing us with brilliant doctors, nurses, PAs, NAs, custodians, food service people and SO many different people who work here at Duke. It is a gift to feel like the people you encounter daily are at work FOR you and that they don't just see you as "work to be done" but as patients and real people, even friends, to take care of.
The fact that I still have a job and that I am able to continue doing full time ministry with high school kids, something that I love, all while trying to be with Jay is nothing short of God's grace. My bosses and my coworkers and the ministry of Young Life have shown me more about what it means to love someone than I can even begin to describe.
Thank the Lord too for good health insurance. I will not go into detail, but wow, thank you Lord.
Finally, I can't even begin to put a number or value on the power of prayer that has been demonstrated on our behalf this year. I don't know how many times this year we have heard people say, I am praying for you, my church is praying for you, my small group, my bible study, my family, my kids... you name it, we've heard it. People are praying all over this state, country, and world. Literally. Prayers from the mouths of babes, prayers in different languages, prayers from those who pray often, prayers from those who aren't sure how to pray. Prayers from people who know us very well. Prayers from people who have never and will never know us at all. Prayers from churches of all denominations, prayers from folks of all ages and races. It blows me away that there are people who literally pray for us on a daily, sometimes hourly basis. I cannot imagine the thousands and thousands of words of intercession for us. Our names have been uttered boldly, desperately, honestly, pleadingly, joyfully to the King of Kings by so many. The noise you all must be making in heaven on our behalf is deafening, but at the same time it is the most beautiful song. We have never known the power of prayer so much as we have this year and my words fail me for the gratitude we have. We covet your prayers and we truthfully believe you have helped sustain us this year. Thank you, thank you, thank you so much for praying with us and for us.
May Jay be blessed with good health moving forward. Stay strong and , Tina, thanks again.
Peace,
Andrea
Many blessings and good health to you and yours,
Lily
Cliff
--Tina
Nicole
There are many different sites out there that offer the same type of journaling service. Others on here I'm sure will comment. I can only say that for my daughter and Alex, it has been a positive. Interestingly enough, Jay has not done the posting but I know he reads every entry that she makes. The two of them are so close that they are like "one minded", so it works for them.
I do know that most of the sites offer the ability to keep the journal private or limited only to those that you give permission to view it, so there is always that option. Hope this info helps.
--Tina
Your daughter writes so eloquently. You must be so proud of how she has dealt with this blow. It was beautiful to read.
Planxty
I wrote a private journal whilst i was going through treatment and i often read back on it.
lisa
Tina, it would have been good to do something like that but I feel so much has passed over the 8 years I've been dealing with cancer to start at this point there is a history to go over first. I will try the short excerpts and see where that leads me.
Happy Mother's Day xxxx
Nicole x
Ever since I was a kid, If I get sick I would always look and yearn for my Mother. Battling AML since Nov. 2012 I would say you mothers are the strongest and steadfast people in this world.
Lots of Love,
Dids
It is on http://BibleThought.org/ at the bottom of the home page --
I called it "No Visitors Please" after the sign on my door at the hospital and what we told our friends. Visits are great but between working and their bringing in all kinds of bad stuff, it was just best to not have it for me ... think about it -- would they visit me at work?
OK -- it is a rather lengthy document but will give you a soup to nuts idea of what you might be up against if you were to attack it. Your story would be much different from mine since you are not chemo only and you probably have a tremendous amount to be telling others who will face just pretty much what you have faced and are facing. So I really encourage your to do it if you can make the time.
Advice after writing three books ... don't feel you have to do it in one night or one week or even a month. Pace yourself. Set a daily page limit -- maybe two double spaced pages per day. If you think about it -- that's sixty per month. Even one per day will eventually get you there. And, Cliff will tell you -- its good therapy, right Cliff? -- dave
I love reading everything you write, from teaching me about Jesus to giving common sense advice. You and this site have given AML (yes, that horrendous disease) a bit of a silver lining.
I have wanted to put together an inspirational anthology of our experiences...not so much the medical stuff, but rather the uplifting stuff, the frightening stuff, and the support that we have gotten from our friends, our family, and our faith. Writing is, as you alluded, so cathartic for me. I love to spend hours looking for just the right phrase, just the right image to convey my thoughts. We have all become like Solomon the wise...we have become more diplomatic, more forgiving, more understanding, and, perhaps, less impatient. I really think we should all discuss the possibility of each of us contributing a vignette, a novelette, a short story, whatever to my proposed book. I am certain that it would help many others cope with the type of adversity that we have weathered. It is a journey that none of us could have imagined taking, even in our blackest nightmare, and yet, here we are, all rowing against the tide and moving ever closer to the dream of good health. Let me know what you think. Please everyone...let me hear your opinions about putting together this opus. I cannot help but think that it will be therapeutic for all of us.
Cliff
Although I don't share your wisdom and the power of your words, I would love to add my experiences to your journal. You and the others have provided me with such strength; I would love to be able to do the same for others.
Myra