Kepi here…
The last few days have been rough going for Karen. The effects of the ATG have started to kick in, night-sweats, hives, nausea, lack of energy and the occasional fever. I have been monitoring Karen's temperature and making sure she is well hydrated and is eating.
Yesterday was her full-body irradiation. This was done, basically, to prepare her bones to receive the new bone marrow. The Radiation Tech said that she wouldn't feel anything, but I swear that she did. She could feel the radiation going through her and tracking along her body. She had a couple reactions to this treatment, more nausea and what she said felt like a sunburn.
Tomorrow is transplant day, day zero. This has been a long awaited day and we are anxious and a little scared to proceed. We know the transplant has been what we have been waiting for and looking forward to, but now that it is here, it has really become reality.
The bone marrow will be done via her Hickman port in IPOP (Inpatient/Outpatient) and should take about 4-hours. We just want to take a quick moment want to say again how thankful we are for her donor, though we don't know who he/she - he/she is a God-sent.
Post-transplant we will have a couple days of rest, where we will go to IPOP for routine blood tests, these are days 1 & 2. They will provide Karen with platelets, blood and whatever else she needs during that time depending on what her blood counts are and any reactions she has to receiving her new bone marrow. On day 3 & 4 she will receive more chemo to help her new bone marrow become engrafted.
Friday, January 10, 2014
Sunday, January 5, 2014
A Summary of Negative Days
Tired is the word lately.
Here's a summary of the past negative days:
Day -8: Second round of ATG (six hours infusion) resulted with joint pains and congestion. It was still manageable, but the evening was nightmarish with sweats and hot flashes all over my body.
Day -7: On the third and last round of ATG treatment, I was confined on my hospital bed most of the day. Chills, fever, headache and stingy eyes kept me company. I slept most of the time. It was around 3 PM that I felt fair enough to move around the hospital and walk around my hallway. My body felt like a heavy brick. I thought I won't make it.
I was supposed to be transferred to IPOP/HIPOP (outpatient chemotherapy treatment), but Dr. B decided to keep me one more day at the hospital. I ate fairly today but my taste buds are starting to change.
Day -6: Woke up feeling better. Night sweats and hot flashes kept me awake most of the night, but to my surprise, I was well enough to sit up and eat breakfast. Dr. B came early and decided to start chemotherapy right away so that I can be transferred to IPOP/HIPOP the next day.
Chemotherapy went well. I am more worried about the ATG side effects - red, throbbing hands and feet, rashes around my back and my eyes are sometimes blood shot.
At around 2 PM, Dr. B signed my papers for IPOP/HIPOP transfer. With a big smile and a heavy duty filtering mask, I walked out of the hospital to our Hackermann housing. Hackermann provides affordable housing to cancer patients in treatment; the housing is just a 10-15 minute walk from and to the hospital and is accessible by a bridge. It's very convenient and highly recommendable.
Day -5: Today, my eyes were red and they stung when I woke up. My hands and feet were so red, swollen and throbbing. It's our first appointment with IPOP/HIPOP, so I was hoping they have some remedies for me. When we got there, Dr. B suggested steroids and Benadryl; they seemed to work but temporarily. Dr. B said such symptoms are expected but they'll only go away once the ATG is totally off my body. Water, water, water…drink lots of water.
Chemotherapy went smoothly.
This afternoon, we're bringing over my parents. It would be nice to have some company.
*It's a cold, bleak and foggy day in Baltimore. I hope the outside world is keeping warm.
Thursday, January 2, 2014
Day -9: One of Three ATG Treatments
After spending New Year's Eve with my parents, it was around 11:30 AM when we left for Johns Hopkins. Admission went smoothly and quickly, my nurse for the day helped me got settled in my room and the blood work began immediately. Since I knew that my first three days will be the infusion of anti-thymocite globulin (ATG), I was really nervous because I've heard horrible stories about allergic reactions to the drug.
I was given pre-meds then my nurse started the ATG infusion at around 5 PM. She also kept watched every 15 minutes for an hour. I am so glad I did ok with the first ATG infusion. About an hour or two to the treatment, I started having a slight headache but it died down.
ATG infusion was finished at around 11:30 PM. Boy I was so tired, but sleeping in a hospital is not the most restful. I didn't get a decent sleep. Perhaps my body is still adjusting to my new environment in addition to the hot flashes I experienced last night. Nurse told me the hot flashes are common reaction to the ATG treatment.
We're now on Day -8.
As for those asking where to send cards or care packages, here's my address. I would love to hear from you.
I was given pre-meds then my nurse started the ATG infusion at around 5 PM. She also kept watched every 15 minutes for an hour. I am so glad I did ok with the first ATG infusion. About an hour or two to the treatment, I started having a slight headache but it died down.
ATG infusion was finished at around 11:30 PM. Boy I was so tired, but sleeping in a hospital is not the most restful. I didn't get a decent sleep. Perhaps my body is still adjusting to my new environment in addition to the hot flashes I experienced last night. Nurse told me the hot flashes are common reaction to the ATG treatment.
We're now on Day -8.
As for those asking where to send cards or care packages, here's my address. I would love to hear from you.
Kayni Dacoco
The Hackerman-Patz Patient and Family Pavilion
Room 306
301 North Broadway
Baltimore, MD 21231Monday, December 30, 2013
Home Away From Home
Today, I feel conflicted, angry, sad, tearful… I never thought all these emotions could be felt at once.
My husband and I have checked-in at the Hackerman-Patz Patient and Family Pavilion. A mixed of raw emotions came over me as we entered our apartment. I couldn't help but cry. I asked, "How did we ever get here?"
Our apartment is very small - a kitchenette, a combined living room and dining room and two twin beds in the bedroom, but we'll make do for the time being. We're lucky to have a place to stay while I undergo treatment. At least, my husband will have a place to clean-up, rest and relax while I'll be confined at the hospital for three days.
The lady at the front desk handed my husband a small but meaningful welcome package, and I really appreciate it. In tough times, even the tiniest gesture of kindness means a lot. The welcome package is from the Kara Foundation. Thank you, Kara Foundation!
Tomorrow, I have another day of transfusions. After my infusion, we will be driving home to Damascus to spend New Year's Eve with my parents. Then drive back to Baltimore to start my treatment on New Year's Day, January 1st.
My husband and I have checked-in at the Hackerman-Patz Patient and Family Pavilion. A mixed of raw emotions came over me as we entered our apartment. I couldn't help but cry. I asked, "How did we ever get here?"
Our apartment is very small - a kitchenette, a combined living room and dining room and two twin beds in the bedroom, but we'll make do for the time being. We're lucky to have a place to stay while I undergo treatment. At least, my husband will have a place to clean-up, rest and relax while I'll be confined at the hospital for three days.
The lady at the front desk handed my husband a small but meaningful welcome package, and I really appreciate it. In tough times, even the tiniest gesture of kindness means a lot. The welcome package is from the Kara Foundation. Thank you, Kara Foundation!
The welcome package - toiletries, snacks, bottled water, lip gloss, sweets and a stationery set.
Included in the package is this book, Healing Light, full of encouraging poetry and colorful illustrations and a stationery set to write my own poetry as well.
Tomorrow, I have another day of transfusions. After my infusion, we will be driving home to Damascus to spend New Year's Eve with my parents. Then drive back to Baltimore to start my treatment on New Year's Day, January 1st.
Friday, December 27, 2013
Consent Forms Signed
As usual, I had platelets and red cells infusions; I don't even know how many transfusions I've had anymore.
Today, I also signed my consent papers to go through with the bone-marrow transplant. Dr. B walked us through the signing of consent papers, and the oncology nurse also discussed the expected side-effects of anti-thymocyte globulin (ATG), chemotherapy and full body radiation. It was a LOT to take and the information overwhelming.
The road looks tough. I think that reality is finally setting in, and there are times that fear takes over the better part of me. There's a lot of uncertainty, but life is full of uncertainties even to those who doesn't have to travel the same road I'm taking.
Just to give you an idea of BMT preparation, here's a list of what I went through for the past three days:
- lots of blood work
- bone marrow biopsy (don't like it)
- infusion of platelets and red cells
- scans (different types)
- pulmonary function test (this is my least favorite)
- echocardiogram (ultra-sound of the heart)
- EKG
- full body radiation simulation
- met my transplant doctor
- met the oncology nurse
Each day was long and exhausting.
Aside from all these medical tests, we also had to temporary house Dizzy, our cat, at a friend's house because pets are not allowed during the recovery period. We miss Dizzy so much :(.
The road to getting better will start on January 1st.
Today, I also signed my consent papers to go through with the bone-marrow transplant. Dr. B walked us through the signing of consent papers, and the oncology nurse also discussed the expected side-effects of anti-thymocyte globulin (ATG), chemotherapy and full body radiation. It was a LOT to take and the information overwhelming.
The road looks tough. I think that reality is finally setting in, and there are times that fear takes over the better part of me. There's a lot of uncertainty, but life is full of uncertainties even to those who doesn't have to travel the same road I'm taking.
Just to give you an idea of BMT preparation, here's a list of what I went through for the past three days:
- lots of blood work
- bone marrow biopsy (don't like it)
- infusion of platelets and red cells
- scans (different types)
- pulmonary function test (this is my least favorite)
- echocardiogram (ultra-sound of the heart)
- EKG
- full body radiation simulation
- met my transplant doctor
- met the oncology nurse
Each day was long and exhausting.
Aside from all these medical tests, we also had to temporary house Dizzy, our cat, at a friend's house because pets are not allowed during the recovery period. We miss Dizzy so much :(.
The road to getting better will start on January 1st.
Thursday, December 19, 2013
BMT Prep Tests Begin
It's 3:22 AM and I can't sleep.
Yesterday, my coworkers and I had our holiday lunch, and it really bothered me because I had to say goodbye to my immediate boss; she's going on vacation and my last day of work would be on the 23rd. I think what really scares me is the uncertainty of what lies ahead. There's no way of knowing what will happen next. My hope is to get cured, pick up where I left off and get on with my life but sometimes the "what ifs" get the better part of me.
The holidays approaching makes everything harder too. It's so hard to get into the Christmas spirit with the twice a week transfusions. People keep saying that I should try to look at the positive side, but I kid you not, it's easier said than done. I sometimes wonder how a rare disease chooses its victims. There's that person who smoked since he was 17 and doesn't get sick a day in his life, maybe a cold here and there but that's it. Here I am, I don't smoke or drink, yet I am in the sickest phase in my life. It's really UNFAIR.
Today, I will be spending much of my day at the hospital. My husband and I will be attending a BMT class in the morning after my labs. Then there's the pulmonary function test and EKG in the afternoon. These are all test preparations for the BMT.
I am getting tired of these hospital trips.
It's now 3:52 AM and I'm still not sleepy.
Yesterday, my coworkers and I had our holiday lunch, and it really bothered me because I had to say goodbye to my immediate boss; she's going on vacation and my last day of work would be on the 23rd. I think what really scares me is the uncertainty of what lies ahead. There's no way of knowing what will happen next. My hope is to get cured, pick up where I left off and get on with my life but sometimes the "what ifs" get the better part of me.
The holidays approaching makes everything harder too. It's so hard to get into the Christmas spirit with the twice a week transfusions. People keep saying that I should try to look at the positive side, but I kid you not, it's easier said than done. I sometimes wonder how a rare disease chooses its victims. There's that person who smoked since he was 17 and doesn't get sick a day in his life, maybe a cold here and there but that's it. Here I am, I don't smoke or drink, yet I am in the sickest phase in my life. It's really UNFAIR.
Today, I will be spending much of my day at the hospital. My husband and I will be attending a BMT class in the morning after my labs. Then there's the pulmonary function test and EKG in the afternoon. These are all test preparations for the BMT.
I am getting tired of these hospital trips.
It's now 3:52 AM and I'm still not sleepy.
Monday, December 2, 2013
Thanksgiving Worth Remembering
My doctor gave me Friday, Nov. 29, as a day off from my regular twice-a-week transfusions. It seems that my body is now holding on to my platelets longer. I attribute that to the IVIG treatment I was given. Also, I no longer bruise easily which is a relief. I get so unhappy when my body is covered with bruises and the horrible looking petechiae.
Recently, I don't like how my photos look. I noticed that I look so old, tired and haggard.
On Wednesday, Nov. 27, I got an e-mail from Miss R, my BMT case manager, that a donor has confirmed. I cried. My coworkers were so elated and they hugged me. We cried.
I knew a week or two earlier that we had two possible 9/10 donors, but we were still waiting for a confirmation. I didn't want to either keep my hopes up or write about them on my blog, as I think it was too early. Also, a donor can choose not to donate at all.
With a hopeful heart, I packed my clothes as we, my parents, husband and I, were Atlantic City (AC) bound to spend Thanksgiving there. We thought we needed a break from our routine; We needed to get away from the things that makes us sad. During our drive to AC, Miss R sent me another e-mail confirming that we have a harvest date - meaning my donor has agreed to have her/his bone marrow harvested on a certain date.
I was astounded. It was hard to comprehend how my Thanksgiving is shaping or should I say becoming a true embodiment of gratitude: Gratitude to God; Gratitude to my donor's kindness; and, Gratitude to my supportive family and friends. I know I have a long way to go, but this is one of the biggest steps to getting a cure.
Truly, I am lost for words but deep inside, the truest form of "gratitude" beats within my heart. I have no words to fully describe it.
Yes, my donor is not a full match (10/10) and this will involve a bigger chance for graft-vs-host disease (GVHD). GVHD "is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted donor cells attack the transplant recipient's body" (NIH). This is my biggest worry, but for now, I will dwell on the spirit of gratitude.
For truly, God has taken me this far and I know He will see me through recovery.
Hugs from chilly Washington D.C.
Recently, I don't like how my photos look. I noticed that I look so old, tired and haggard.
On Wednesday, Nov. 27, I got an e-mail from Miss R, my BMT case manager, that a donor has confirmed. I cried. My coworkers were so elated and they hugged me. We cried.
I knew a week or two earlier that we had two possible 9/10 donors, but we were still waiting for a confirmation. I didn't want to either keep my hopes up or write about them on my blog, as I think it was too early. Also, a donor can choose not to donate at all.
With a hopeful heart, I packed my clothes as we, my parents, husband and I, were Atlantic City (AC) bound to spend Thanksgiving there. We thought we needed a break from our routine; We needed to get away from the things that makes us sad. During our drive to AC, Miss R sent me another e-mail confirming that we have a harvest date - meaning my donor has agreed to have her/his bone marrow harvested on a certain date.
I was astounded. It was hard to comprehend how my Thanksgiving is shaping or should I say becoming a true embodiment of gratitude: Gratitude to God; Gratitude to my donor's kindness; and, Gratitude to my supportive family and friends. I know I have a long way to go, but this is one of the biggest steps to getting a cure.
Truly, I am lost for words but deep inside, the truest form of "gratitude" beats within my heart. I have no words to fully describe it.
Yes, my donor is not a full match (10/10) and this will involve a bigger chance for graft-vs-host disease (GVHD). GVHD "is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted donor cells attack the transplant recipient's body" (NIH). This is my biggest worry, but for now, I will dwell on the spirit of gratitude.
For truly, God has taken me this far and I know He will see me through recovery.
Hugs from chilly Washington D.C.
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