Another long day at HIPOP but another day at home and not in the hospital. My counts are doing well - holding steady. My VOD is still on the decline and it is very rare that it would come back.
My sister Denise is in town this week helping out and this ends the assistance from family members. Dave and I found 2 people to help out in the mornings with the kids and one girl will do some eveings as well.
Hopefully the kids will adjust to yet another change in the routine.
I am feeling okay but worn out. Dave is taking great care of all of us. If anyone wants to pitch in this weekend and give him a hand with the kids he would probably love some time off.
My sister in law made a t shirt and other stuff to support me and the hodgkins cure. Following is the link:
http://www.cafepress.com/heathersteam
A journal to keep everyone up to date with my Primary Refractory Hodgkin’s, radiation myelitis, and the little Z’s.
Followers
A QUICK TIMELINE
2006
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
Good Links
Maple
4 comments:
Heather, Dave and family--I have been keeping up on the news here in portland through your website, and am thrilled that you are home and doing better. I cannot imagine the courage it takes to face it day and treatment and setback as it comes, but your mother raised you well! Keep up the hard work you are doing to get well. Juli S.
Heather,
You and David are both amazing. Keep on keeping on and I'll see you very soon.
Lots of love to all,
Dan
Good morning Heather: From rainy Portland (What's new) to snowy MD. Jess, Matt and I are off to hear Jillian play in All Northwest Symphonic Band competition here in Portland today. She plays flute...sound like a family trait? I am so glad to hear you are handling the transition to home. Our love to you, Dave and the kids. You are all amazing. Aunt Joyce
We are off to London to baby-sit but Louise promised to keep me posted!
Thinking about all of you all the time!
Hope you received my BIG HUG e card on your computer Heather?!
Much love, Edna & Werner
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