A Reflection On Day 0

It was a foggy day in Baltimore and it was my birthday.

We were at the hospital waiting. My nurse came in once in a while to update us. Kepi, Mom and Dad were there. The cells are coming in by plane and it should be around 2:30 PM (ET). My nurse was a bit worried because it's too foggy and he was concerned if planes can even land through the thick fog.

I was worried.

But by 2:30 PM, the courier, a woman with disheveled hair, arrived. She said that she had to rush the cells as soon as it arrived. I was grateful and I told her, "Thank you."

The bag was huge, bulky and heavy. As you can see (photo below), my nurse had to reinforce the way it was hung because it might fall. The bag was pumped from 2:30 PM to 4:30 PM. It was a long day. It was a long life-saving day.

Before Day 0 or Transplant Day or my transplant birthday, I was nervous (scared) that my donor might back out. But my faith in man was restored and that there are some people out there who are unselfish and dedicated to save their fellow men.

To my donor, I can't possibly describe how grateful I am. My feelings were indescribable that I was in tears when your cells were pumped into my system. I know there are other obstacles I have to go through such as engraftment, infections and graft-vs-host disease, but with your gift of life, I know I can make it through anything. You have given me a feeling of hope and courage. Again, thank you. My family thanks you.

I hope that what you did would encourage would be donors especially in the minority communities.

I hope we can meet soon. If the slipped rumors are true at the hospital, it would be lovely to meet you in the islands of Aloha, my home state. It might have been fate that I am forever bound with these beautiful islands. If the rumors are true, then I have a second Ohana (family) in Hawaii.

Mahalo nui loa. (Thank you very much.)
Ke Akua pu a hui hou. (God bless you and see you later.)

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.

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.

Kayni Dacoco

The Hackerman-Patz Patient and Family Pavilion

Room 306

301 North Broadway

Baltimore, MD 21231