Hello dear friends and family,
Some of you have been asking for updates on John's progress. I am going to try and keep information flowing through John's blog. Unfortunately, John is too shaky to keep up with the typing. As many of you already know the leukemia relapsed quite quickly after John's transplant. Relapsing so quickly is not a "good thing". After alot of searching for clinical trials around the country we have decided to start treatment at Scripps Green Hospital. John will be inpatient for a minimum of 5 days. The leukemia did not give us much time for further searching. The positive aspect about being at Scripps Green is we feel very comfortable with the Scripps Green staff and being close to our girls has always been a huge priority for us.
We know that their is no cure for John's leukemia, which has become aggressive. We still want to fight it with all we've got. John has been through alot of physical pain as well as deep sorrow. He also has realized what a wonderful and purposeful life he has created for himself and his family. John is so grateful for all who have supported us in this journey.
Once again, John's mom, Rena, has made the huge sacrifice of temporarily leaving her husband and business to help care for our daughters while John still fights. We will always be grateful to Rena for her immense sacrifice and wonderful care of our family.
Please keep John in your prayers. Also, please pray for our girls to have strength and joy in their hearts no matter what the outcome.
I am so amazed by the love and support that our family, friends, and John's colleagues have shown us through these past few months. I'm so proud to know such amazing people!!! It also tells me what a wonderful guy John is to surround himself with incredible human beings.
We will keep in touch!
With much love,
Theresa (John's wife)
Wednesday, May 18, 2011
Friday, April 1, 2011
Day +57 Transplant results in 100% remission on Day +30
Hello everyone!
Thank so much for all the inquiries and well wishes that have continued to be sent my way via a post or emails!
I was discharged from my stem cell transplant stay on March 4th. Just to get home and be with the family was the highlight. On March 9th my physicians declared me in remission and that my new marrow had taken over all my old (bad) marrow 100%!!! This was awesome news, what everyone had prayed for. I will get a bone marrow biopsy at day +100 just to make sure nothing has changed. The 5 year check is when I get to use the "cured" word. So between now and 5 years from now, I will need to stay healthy and well nourished.
The week I was discharged I noticed swelling and pain in my right ankle. Turns out my heal bone was infected and had a nodule growing into my heal bone. I was scheduled for surgery a couple weeks after my discharge. I am still awaiting the results of all the biopsies. The physicians suspect it may be cocci (valley fever) like I had during my induction therapy.
I continue to have side effects from all the meds I am taking (very tired, tremors) but I am well taken care of at Scripps Green Hospital, where I go every Mon/Thurs for follow up and labs.
Take care and love you all!
John
Thank so much for all the inquiries and well wishes that have continued to be sent my way via a post or emails!
I was discharged from my stem cell transplant stay on March 4th. Just to get home and be with the family was the highlight. On March 9th my physicians declared me in remission and that my new marrow had taken over all my old (bad) marrow 100%!!! This was awesome news, what everyone had prayed for. I will get a bone marrow biopsy at day +100 just to make sure nothing has changed. The 5 year check is when I get to use the "cured" word. So between now and 5 years from now, I will need to stay healthy and well nourished.
The week I was discharged I noticed swelling and pain in my right ankle. Turns out my heal bone was infected and had a nodule growing into my heal bone. I was scheduled for surgery a couple weeks after my discharge. I am still awaiting the results of all the biopsies. The physicians suspect it may be cocci (valley fever) like I had during my induction therapy.
I continue to have side effects from all the meds I am taking (very tired, tremors) but I am well taken care of at Scripps Green Hospital, where I go every Mon/Thurs for follow up and labs.
Take care and love you all!
John
Saturday, February 26, 2011
Day +24 - Out of a thick fog
Hello Everyone!
A big, big, thank you to family, friends, and colleagues that continue to send prayers, strength, and support my way!
In the last few days I have gone from 6 infusions to 1!!! I am now able to take oral pills so much of the pain and issues with fluid retention have made a huge difference in how I feel.
The good thing is I don't remember all that has gone on in the last 3+ weeks.
Just wanted to let you all know I am doing well, out of the fog of the summit and headed down that trail that will get me to base camp soon!
Special thank you (with no end) to my beautiful wife and Angel Theresa, the extrodanary patience of my litte girls, the help/care of my Mama, my mother in-law Loretta, grandma Joyce, my bro Mike and his wife Mia, and my sister in-law Laura and her husband Joey! Even though I do not remember all the time you stayed by my side during these past weeks, your love and care is very much appreciated (with no ends).
God bless you all!
John
A big, big, thank you to family, friends, and colleagues that continue to send prayers, strength, and support my way!
In the last few days I have gone from 6 infusions to 1!!! I am now able to take oral pills so much of the pain and issues with fluid retention have made a huge difference in how I feel.
The good thing is I don't remember all that has gone on in the last 3+ weeks.
Just wanted to let you all know I am doing well, out of the fog of the summit and headed down that trail that will get me to base camp soon!
Special thank you (with no end) to my beautiful wife and Angel Theresa, the extrodanary patience of my litte girls, the help/care of my Mama, my mother in-law Loretta, grandma Joyce, my bro Mike and his wife Mia, and my sister in-law Laura and her husband Joey! Even though I do not remember all the time you stayed by my side during these past weeks, your love and care is very much appreciated (with no ends).
God bless you all!
John
Tuesday, February 1, 2011
Day -1... The stem cells have been harvested!
Hello!
Thank you all for the very nice posts! I really appreciate all the well wishes!
I received news today that my donor's stem cells were harvested/collected today. Unfortunately, some of the weather may be effecting when the cells get delivered and right now they are scheduled to arrive tomorrow evening around 6pm. This means that I will receive my transplant tomorrow evening or early Thursday morning. I will know for sure tomorrow, so we may be repeating Day -1, on Groundhog Day of course!
I am feeling good and strong. Tiredness, nausea, and increased mouth and throat pain are prevalent, but on the bright side, my hiccups have subsided! I get in 2-3 good walks everyday and always helps me feel energized.
I was given my last dose of the RATG today and started on another immunosuppresive drug called Tacrolimus (Prograf) that will be infused 24/7 for the next 2-4 weeks.
I had very nice visits from our good friends Wes and Kristi yesterday and Barry today. Thank you all for taking time from your day for the visit!
One story I need to share is that on Monday, the Eucharistic Minister that came to my room to give me Holy Communion, is the aunt of "Rocky" Bleier (Pittsburgh Steeler running back #20,1968-69, 1969-70: served in Vietnam, 1970-1980). She saw my Steeler hat and said I was routing for the right team...must be fate (Rocky is in his mid 60's, so yes, his aunt was very old, but very sweet)! Steelers will win their 7th Championship on Feb 6th!
I will let you all know if indeed Groundhog Day has us repeating Day -1 tomorrow!
Love,
John
Thank you all for the very nice posts! I really appreciate all the well wishes!
I received news today that my donor's stem cells were harvested/collected today. Unfortunately, some of the weather may be effecting when the cells get delivered and right now they are scheduled to arrive tomorrow evening around 6pm. This means that I will receive my transplant tomorrow evening or early Thursday morning. I will know for sure tomorrow, so we may be repeating Day -1, on Groundhog Day of course!
I am feeling good and strong. Tiredness, nausea, and increased mouth and throat pain are prevalent, but on the bright side, my hiccups have subsided! I get in 2-3 good walks everyday and always helps me feel energized.
I was given my last dose of the RATG today and started on another immunosuppresive drug called Tacrolimus (Prograf) that will be infused 24/7 for the next 2-4 weeks.
I had very nice visits from our good friends Wes and Kristi yesterday and Barry today. Thank you all for taking time from your day for the visit!
One story I need to share is that on Monday, the Eucharistic Minister that came to my room to give me Holy Communion, is the aunt of "Rocky" Bleier (Pittsburgh Steeler running back #20,1968-69, 1969-70: served in Vietnam, 1970-1980). She saw my Steeler hat and said I was routing for the right team...must be fate (Rocky is in his mid 60's, so yes, his aunt was very old, but very sweet)! Steelers will win their 7th Championship on Feb 6th!
I will let you all know if indeed Groundhog Day has us repeating Day -1 tomorrow!
Love,
John
Monday, January 31, 2011
Day -5 to -2 Lots of Meds, and Finally Some Golf
Hello,
Thank you all for the well wishes, prayers, posts, emails and thoughts of strength and hope over the past few days!
Friday, Day -5 was a busy one. I graduated from my radiation treatment with the two final treatments done by 1pm. At 3pm I had to do a lung treatment that coated my lungs with an inhaled med that will protect me from pneumonia over the next few weeks. All in all I have tolerated all the treatments well with minor discomfort (nausea, sore throat, and hiccups) and I am feeling strong.
On Saturday, Day -4, I received my high dose of chemotherapy (VP16 or etoposide) over a 5 hour period. Spent most of the time in bed asleep since I also get some benadryl and demerol to prevent reactions.
With the radiation and VP16 treatments completed, my old immune system and bone marrow is on it's way out, literally obliterated. As of today, my white counts are all but non-existent and I will be getting red cell and platelet transfusions regularly, until my new marrow kicks in after transplant.
After the VP16 completed, I began receiving Rabbit Anti-thymocyte Globulin (RATG) which is a strong immunosuppressive med that prevents my T-Cells from attacking the new donor cells when I get them. I just get one dose of the chemo, and I will get 4 doses of the RATG over 4 days. On day -1 I will also receive another immunosuppresive med called Tacrolimus which I will be a more long term med I will be on to keep my T-Cells in check in addition to keeping my new immune system in check from attacking my own body as a foreign invader.
I will know tomorrow whether I get my stem cell transplant on Wednesday or Thursday, but I will keep everyone posted.
Friday, I did get to see Tiger Wood's group hitting from the 15th fairway and teeing it up at the 16th tee box from a nice vantage point on the 4th floor of the hospital. Thank you Tod and Tiffany for letting me borrow your binoculars!!!Saturday I mostly watched on TV since I was in and out all day. Theresa stayed with me Saturday night which was nice, but the poor thing did not get much rest with all the nurses coming in and out all night. We had a nice breakfast together before she went home to the girls. Thank you my Princess! I love you with all my heart!
My brother Mike and nephew Max came by just before Theresa left and we watched the golf tournament and played some cards. Yes, I have a card table and cards in my room! Thank you Max and Bro for your visit, I had fun.
I am getting walks in at least twice a day to stay strong for the next few weeks.
Lunch and dinner didn't work out with all the nausea I was having, but I did power down a few bananas and some apple sauce. Got more RATG and then my daily dose of AmphoB with demerol which pretty much takes me out for the night. Still getting AmphoB daily until my new immune system kicks in after transplant to keep Valley Fever at bay.
Thank you all for continuing to check in and send prayers my way!
Love,
John
Thank you all for the well wishes, prayers, posts, emails and thoughts of strength and hope over the past few days!
 |
| Getting ready to inhale |
On Saturday, Day -4, I received my high dose of chemotherapy (VP16 or etoposide) over a 5 hour period. Spent most of the time in bed asleep since I also get some benadryl and demerol to prevent reactions.
With the radiation and VP16 treatments completed, my old immune system and bone marrow is on it's way out, literally obliterated. As of today, my white counts are all but non-existent and I will be getting red cell and platelet transfusions regularly, until my new marrow kicks in after transplant.
After the VP16 completed, I began receiving Rabbit Anti-thymocyte Globulin (RATG) which is a strong immunosuppressive med that prevents my T-Cells from attacking the new donor cells when I get them. I just get one dose of the chemo, and I will get 4 doses of the RATG over 4 days. On day -1 I will also receive another immunosuppresive med called Tacrolimus which I will be a more long term med I will be on to keep my T-Cells in check in addition to keeping my new immune system in check from attacking my own body as a foreign invader.
I will know tomorrow whether I get my stem cell transplant on Wednesday or Thursday, but I will keep everyone posted.
 |
| Really, a good view of the 15th fairway and 16th tee |
My brother Mike and nephew Max came by just before Theresa left and we watched the golf tournament and played some cards. Yes, I have a card table and cards in my room! Thank you Max and Bro for your visit, I had fun.
 |
| View from my room (Farmer's blimp in sky) |
I am getting walks in at least twice a day to stay strong for the next few weeks.
Lunch and dinner didn't work out with all the nausea I was having, but I did power down a few bananas and some apple sauce. Got more RATG and then my daily dose of AmphoB with demerol which pretty much takes me out for the night. Still getting AmphoB daily until my new immune system kicks in after transplant to keep Valley Fever at bay.
Thank you all for continuing to check in and send prayers my way!
Love,
John
Thursday, January 27, 2011
Day -7 and - 6 Busy...where's Tiger?
Hello!
Thank you for all the kind posts on Day -8!!! Day -7 and -6 (Weds/Thurs) were busy ones!
The pace of the day is pretty quick with 3 TBI treatments per day. The noon treatment included an extra treatment of my ribs since during most of the treatments they are blocked by the led castings protecting my lungs.
I have had many questions about how much radiation I am getting and what it feels like. First, here are a couple of pics (thank you honey!) of the machine that delivers the radiation (linear accelerator) and me standing by the board I stand up on during treatment.
A standard X-Ray usually delivers about 1.4 milliGrays (or .0014 Grays) of radiation which is harmless. 5.0 Grays delivered at once can cause destruction of vital organs and death. Each treatment I get (3 per day or fractionated) deliver 1.2 Grays per treatment, with 4 hours in between each treatment. I am getting a total of 11 treatments for a total of 13.2 Grays over a 4 day period of fractionated treatments that keeps me safe but destroys the Leukemia and bone marrow.
The treatments usually last about 10-15 minutes, but I made a music CD to play in the treatment room to pass the time. I don't feel anything, but get a little tired standing in one position for a long time. Wiggling my fingers and toes helps.
I just started feeling some nausea today and some fatigue due to the radiation. It looks like I have a mild sunburn/suntan, but I have been kept well hydrated with IV fluids and lots of water.
Theresa came by today and brought the BMT staff lunch. My sister-in-law Laura and my mother-in-law Loretta came by for a quick visit as well. My Grandma Joyce and Aunt Debbie came by to say hi after an appointment, so it was nice to see some visitors.
Theresa, me and it seems the whole hospital staff were looking for Tiger today, but since he played the North Course he was no where to be seen from the hospital. I have a beautiful view of the ocean and South Course with a small window through trees of the 9th fairway, 15th green and 16th tee box.
I may get a chance to check out the tournament from an empty room in one of the higher floors tomorrow.
My transplant day is scheduled for February 2nd, however, it may be on February 3rd if the harvesting center has to collect from the donor over two days. I will know for sure on February 1st what the plan is.
I am almost 1/3rd of the way up the summit and I am climbing strong!
God bless you all and thank you for all the support and prayers!
Love,
John
Thank you for all the kind posts on Day -8!!! Day -7 and -6 (Weds/Thurs) were busy ones!
The pace of the day is pretty quick with 3 TBI treatments per day. The noon treatment included an extra treatment of my ribs since during most of the treatments they are blocked by the led castings protecting my lungs.
 | <>
Linear Accelerator |
I have had many questions about how much radiation I am getting and what it feels like. First, here are a couple of pics (thank you honey!) of the machine that delivers the radiation (linear accelerator) and me standing by the board I stand up on during treatment.
A standard X-Ray usually delivers about 1.4 milliGrays (or .0014 Grays) of radiation which is harmless. 5.0 Grays delivered at once can cause destruction of vital organs and death. Each treatment I get (3 per day or fractionated) deliver 1.2 Grays per treatment, with 4 hours in between each treatment. I am getting a total of 11 treatments for a total of 13.2 Grays over a 4 day period of fractionated treatments that keeps me safe but destroys the Leukemia and bone marrow.
The treatments usually last about 10-15 minutes, but I made a music CD to play in the treatment room to pass the time. I don't feel anything, but get a little tired standing in one position for a long time. Wiggling my fingers and toes helps.
I just started feeling some nausea today and some fatigue due to the radiation. It looks like I have a mild sunburn/suntan, but I have been kept well hydrated with IV fluids and lots of water.
Theresa came by today and brought the BMT staff lunch. My sister-in-law Laura and my mother-in-law Loretta came by for a quick visit as well. My Grandma Joyce and Aunt Debbie came by to say hi after an appointment, so it was nice to see some visitors.
Theresa, me and it seems the whole hospital staff were looking for Tiger today, but since he played the North Course he was no where to be seen from the hospital. I have a beautiful view of the ocean and South Course with a small window through trees of the 9th fairway, 15th green and 16th tee box.
I may get a chance to check out the tournament from an empty room in one of the higher floors tomorrow.
My transplant day is scheduled for February 2nd, however, it may be on February 3rd if the harvesting center has to collect from the donor over two days. I will know for sure on February 1st what the plan is.
I am almost 1/3rd of the way up the summit and I am climbing strong!
God bless you all and thank you for all the support and prayers!
Love,
John
Wednesday, January 26, 2011
Day -8 Busy Day
Hello and thank you for all your posts for Day -9!
The posts were a nice boost to my day today. Day -8 started out with an amazing view from my room of the of the sunrise lighting up the sky. I was blessed to get a double bed room (without a roommate) with a nice view of the ocean and Torrey Pines South where the Farmers Open is being played this week.
Around 7:30am I was taken down to radiation oncology for my first radiation treatment. In order to knock out my old bone marrow. Since bone marrow is in every bone in the body, my entire body is being irradiated for 10-15 minutes, three times a day for 3 days, then 2 times on Friday. The radonc staff makes sure my lungs and other vital organs are protected as much as is possible.
After my first TBI treatment I was sent to the operating room to get a Groshong catheter in my chest that will be used for my stem cell transplant next week. It was a short procedure and I was able get back to my room for a snack before I went back down to radonc for my second TBI treatment for the day. The third treatment was in the afternoon.
I received a blood transfusion today and yesterday and I have started receiving daily AmphoB infusions to prevent any flare ups of Valley Fever.
Theresa, my Mom and the girls came by for dinner, homework, and we watched a bit of the State of the Union Address too. Theresa brought me a table to put in my room so we can sit together, it is great!
Love you all, and thank you again for all the wonderful day -9 posts!
John
The posts were a nice boost to my day today. Day -8 started out with an amazing view from my room of the of the sunrise lighting up the sky. I was blessed to get a double bed room (without a roommate) with a nice view of the ocean and Torrey Pines South where the Farmers Open is being played this week.
Around 7:30am I was taken down to radiation oncology for my first radiation treatment. In order to knock out my old bone marrow. Since bone marrow is in every bone in the body, my entire body is being irradiated for 10-15 minutes, three times a day for 3 days, then 2 times on Friday. The radonc staff makes sure my lungs and other vital organs are protected as much as is possible.
After my first TBI treatment I was sent to the operating room to get a Groshong catheter in my chest that will be used for my stem cell transplant next week. It was a short procedure and I was able get back to my room for a snack before I went back down to radonc for my second TBI treatment for the day. The third treatment was in the afternoon.
I received a blood transfusion today and yesterday and I have started receiving daily AmphoB infusions to prevent any flare ups of Valley Fever.
Theresa, my Mom and the girls came by for dinner, homework, and we watched a bit of the State of the Union Address too. Theresa brought me a table to put in my room so we can sit together, it is great!
Love you all, and thank you again for all the wonderful day -9 posts!
John
Monday, January 24, 2011
Day -9 Pre Stem Cell Transplant
Welcome back everyone! Thank you for joining me again on this part of my journey. My previous blog chronicled the days through my fight to get my Acute Myeloid Leukemia (AML) into remission. Last you heard from me I had gotten in to remission, however, it was brief and my leukemia was stubborn and decided to stick around in 20-30% of my marrow. Between December and now, I have been able to enjoy family, friends and getting back to work.
Today is Day -9 to stem cell transplant. When I get the stem cells it will be Day 0, and then we will get into positive territory! Starting tomorrow I will be getting Total Body Irradiation (TBI) three times a day for 3 days, then twice on Friday. On Saturday I get my chemotherapy drug called Etopiside (or VP16). This one-two punch will obliterate my diseased marrow, including the leukemia and MDS. I will then get anti-rejection drugs to get me ready for getting my new cells on Wednesday February 2nd.
Thank you all again for your love and support!
John
Today is Day -9 to stem cell transplant. When I get the stem cells it will be Day 0, and then we will get into positive territory! Starting tomorrow I will be getting Total Body Irradiation (TBI) three times a day for 3 days, then twice on Friday. On Saturday I get my chemotherapy drug called Etopiside (or VP16). This one-two punch will obliterate my diseased marrow, including the leukemia and MDS. I will then get anti-rejection drugs to get me ready for getting my new cells on Wednesday February 2nd.
Thank you all again for your love and support!
John
Subscribe to:
Posts (Atom)