I have been working on bringing "Be The Match" bone marrow registry to our local Asian Festival for the first time. Asian Festival has more than 100,000 visitors every year and I just thought it would be a great place to have a bone marrow registry drive to target the Asian population and thus boost the chance of finding a match for kids of Asian descent. I didn't know who/what/how but I started by making phone calls and looking up contacts over the Internet. I'm two weeks into doing this and I have made significant progress. Asian Festival has agreed to give me a table at the health fair section and Be The Match's local account executive will work with me very closely and physically be present at the festival. We have five weeks until the Asian Festival weekend and there's a lot to be done. I have worked single-handedly but I started to gather a list of friends who said they are willing to help out. Two most important tasks would be publicity and volunteer recruitment and training.
I want to share this because I think we parents thrown into this also need to figure out why. I'm reading a book called the Deeper Path and found that turning hurt into heal is exactly what I'm doing. I'm finding strength in myself that I was never aware of. I have a pretty demanding full time job. My kids are 5 yo and 4 yo -- the 4 yo is in maintenance. I do not currently have help besides my husband. We are juggling between work and taking kids to where they need to be. However, I have found such desire to take ownership of whatever I do right now. I see a problem, I see a solution, and I am part of the solution. No more whining blaming or pointing fingers. There are so many things that we can help with. Even though our help seems so trivial considering the vastness of the problems, I am a strong believer in every little bit helps. Start from myself. Do my share.
Here are the things that will help us to run a successful drive:
*** Publicity
(1) contact different Asian mailing list (big university, big corporation, big organization, community mailing list)
(2) have a Facebook page to promote the event in social media
(3) be part of what Asian Festival will promote this year in their media releases
*** Volunteer training
(1) start a list, identify a few recruitment leaders, one in each area (work, Chinese community, OSU)
(2) arrange training from BTM AE at each site
If there's any local readers out there who want to be part of the effort, please contact me. Thank you!
Saturday, April 19, 2014
Wednesday, April 9, 2014
Another level of involvement
Today I made a leap in terms of the involvement with the leukemia community. I have been pondering about this idea for a while and I finally made the initial step today.
I often hear the lack of presence of Asian population in bone marrow registry. I myself have been registered even before Lucas's diagnosis and it was such an easy process. I hear a few stories of dying Asian Americans waiting desperately for a marrow match. Watched some Youtube videos begging people go get registered -- very sad stories.
I'm having my fingers crossed that Lucas will stay in remission with chemotherapy. But I am the kind of person who likes to act when there's work to be done.
So today is the day! I got support from two wonderful community leaders within my company. I made a call to www.asianmarrow.org to get educated on how to run a donor registry drive. We have an action plan for May the Asian heritage month. I want to educate the local community. Numbers will grow one by one, day by day.
Two things planned:
(1) Lunch and Learn session at work
(2) Setting a table/booth in Asian Festival during memorial weekend
One common goal - get more Asians registered in bethematch!
Lots of work to be done in terms of logistics. But it will be a great learning experience for me. Hopefully I will get to do this for an ongoing basis.
Thank you so much for the support, my friends!
I often hear the lack of presence of Asian population in bone marrow registry. I myself have been registered even before Lucas's diagnosis and it was such an easy process. I hear a few stories of dying Asian Americans waiting desperately for a marrow match. Watched some Youtube videos begging people go get registered -- very sad stories.
I'm having my fingers crossed that Lucas will stay in remission with chemotherapy. But I am the kind of person who likes to act when there's work to be done.
So today is the day! I got support from two wonderful community leaders within my company. I made a call to www.asianmarrow.org to get educated on how to run a donor registry drive. We have an action plan for May the Asian heritage month. I want to educate the local community. Numbers will grow one by one, day by day.
Two things planned:
(1) Lunch and Learn session at work
(2) Setting a table/booth in Asian Festival during memorial weekend
One common goal - get more Asians registered in bethematch!
Lots of work to be done in terms of logistics. But it will be a great learning experience for me. Hopefully I will get to do this for an ongoing basis.
Thank you so much for the support, my friends!
Wednesday, March 5, 2014
Recent chemo hold and hospitalization
1/20 begin 3rd cycle, ANC 3040, same chemo dose (increasing in actual pills since Lucas has been growing and gaining weight)
2/4 I still like to take Lucas for CBC labs in-between visits. Surprising ANC = 602,
2/9 recheck ANC = 1334
2/18 scheduled clinic visit with Vincristine, Pentamadine. ANC = 538. Needs IVIG but had a reaction (severe chills). Lucas was having a cold and the lungs didn't sound very clear. Chest X-Ray shows no bacteria infection, Lumbar puncture which was scheduled for the next got postponed for 2 weeks.
2/21 Another CBC lab shows ANC = 288, chemo hold since it's less than 500
2/25 Clinic visit. Lungs seem to be clearing up. ANC = 704. Need 750 to restart chemo.
2/28 CBC lab. ANC = 238.
2/28 Friday. My parents were scheduled to leave for China very early next morning. We had had a busy week getting the shopping, visiting USCIS, with increasing clinic/lab visit for Lucas. I took Lucas for lab visit in the morning, took my mom to USCIS at lunch time to get a stamp in her passport since she has received the green card with correct gender. Our babysitter Lori took boys to preschool then Jianwei picked them up in the afternoon -- it was their last day at that part time preschool. I thought Lucas's ANC would be higher than 750 and I didn't hear back the result until 2pm. Anyway, when I got home shortly after 5pm, Jianwei informed me that Lucas just woke up and feeling warm. I took the temperature and it was 101.2. It was really bad timing since my dad was busy preparing the last dinner before their departure. But we cannot wait, off to ER we went. Lucas started to have cold symptoms late Wednesday (he had almost a week free of cold symptoms). Not being able to get the full dose of IVIG surely didn't help!
3/1 Saturday: fever with rising ANC. It's hard during winter since Alex is not allowed in hospital (no siblings under age 12 can visit during cold/flu season) and the playroom hours are very limited during weekend. We had to ask a nurse to look after Lucas when Jianwei and I switch shifts of staying home with Alex versus staying at hospital with Lucas.
3/2 Sunday: no fever with dropping ANC.
3/3 Monday: ANC 42. Fever free for 24 hours. Dr. Setty is the attending! Dr. Setty let us go home with super low ANC before -- she understands that some parents can be trusted to take care of their kids at home. If ANC is the only thing holding back the kids, she would let us go. So this time she let us go once again.
Life is surely more difficult without grandparents' help. We are so thankful to have our wonderful babysitter Lori. She took care of Alex during frontline treatment when we took him out of preschool for fear of him bring home viruses. Alex absolutely loves her since she is always so patient and fun! When we both took Alex to a friend's birthday party, other parents would think Lori is the mother and I am the nanny since Alex always runs to her instead of me! I'm so thankful that Alex had her since frankly he was getting much needed attention from her during those difficult months. She has been providing transportation to the boys for their part time preschool so Lucas got to her a little bit. Today is the first day that Lucas spent time with Lori. I'm so happy to see them bonding finally. Alex is very jealous that Lucas gets to stay home with Lori. I would be jealous also! :)
Another CBC lab this Friday and hoping the results will be good. Chemo can resume and Lucas can start full time preschool -- which he officially started 3/3 but hasn't been able to go because of low counts.
The hardest part is that both Jianwei and I have the same cold (Coronavirus). It's pretty rough with more symptoms than what I normally experience with cold. But we couldn't rest since we need to save our precious out-of-office time to take care of Lucas. I wish I could sleep in all day as I felt rather congested and dizzy, but I didn't have the luxury. I think that is the hardest part of taking care of a sick kid -- you have to take care of them even when you are sick yourself. Luckily we are in good health for the most part and hopefully we will get over this cold virus soon. And hopefully I didn't pass it on to any of my coworkers.
I used to *despise* coworkers who came to work when they were obviously sick. "Can't you work from home instead?" Now I know that some of us just can't. Because our sick kids who have too weak an immune system to leave home are occupying our home. I cannot work from home since they are too young to leave me alone. Jianwei can since kids tend to leave him alone regardless. :P I couldn't afford taking more time off since I have work to finish and I want to save my time off for future hospitalization and clinic visits. I know every time I get a cold, I will have lingering cough for a while so a day or two wouldn't cure me. I thought about going to Panera Bread to work to infect the strangers instead of my lovely coworkers. Hey, I feel like I need to sing the Despicable Me song! Anyway, I *despise* me! Hoping none of them get sick!
Monday, January 27, 2014
Friday, December 13, 2013
Crapversary!
We first heard the term "crapversary" from ALL parents list. How appropriate it is!
One year ago today at this moment, we just received the dreadful call from the pediatrician-- who we saw three hours ago and thought everything looked good with Lucas, the fatigue and paleness was attributed to a lingering cold. The image of the moment when I received the call and how I walked outside to the driveway to let Jianwei hear it with his own ears is going to be something that Jianwei and I will remember very vividly for the rest of our lives.
Today, strangers could not have guessed that Lucas is in treatment for leukemia. He is doing well and we are immensely grateful. His last CBC numbers as of the past Tuesday was: hgB 13, platelets 242 WBC 3.1 ANC 1600. He is still on 40% of the 6MP dose and increased to 70% of the oral MTX dose. He has got IVIG for the second time 2 weeks ago as his IgG level rose from 220 to 360 -- but still below the 560 threshold. We have changed weekly finger poke to every 10 days, and most recently to every two weeks. He hasn't missed a school day for almost 2 months! We signed him up for full-time preschool starting March. His new teacher is a young American born Chinese lady who can speak some Mandarin. Hopefully that will help him to catch up with age-appropriate development. He hasn't grown a whole lot since September -- still just above 92cm, which is below 5th percentile for his age. His appetite is unpredictable but usually okay. He has gained weight -- mostly because how diligently my dad has been cooking.
I very much appreciate how my work environment continued to be friendly as well as interesting. My time at work is usually very busy and somewhat demanding, but I manage to not to work over 40 hours a week. It's rare to have a workplace that offers real opportunity in career development while maintaining work-life balance from top-down. For that, I feel immensely grateful as well.
Every evening I enter our house through garage, I can smell the delicious meal that my dad is preparing. I'm so blessed to have my parents here to help out! I do plan to give my parents a break in the spring -- concurrent with Lucas starting full-time preschool. Hopefully Lucas will stay healthy and we will be able to handle it (it will be the first time we do not have help from grandparents ever since Lucas was born).
Lucas and Alex have played a lot more and a lot better just over the past month. There are still places that I go with Alex alone without Lucas. Alex and I went with his friends to Zoo for the first time in the past year in early November (it's not safe to Lucas to be close to animals). I will take Alex to see Nutcrackers tomorrow. We did take both kids to Jianwei's workplace holiday party on Wednesday. Very few people take kids that young to workplace holiday parties and the coworkers all commented on how well-behaved Lucas and Alex were. I guess they are pretty good boys after all. This is the third consecutive year that we take the boys to that holiday party (that might be the only event we are doing so consistently). We were quite brave to take them there when they were 3 and 1.5 two years ago. We indeed enjoy going to places with kids. I can't wait until they get bigger and we get to travel to many different places.
I think the readers all agree that no news from me is good news. If I don't write an entry before Christmas -- may you have a wonderful holiday and best wishes for you and your family in 2014. Most importantly, stay healthy!
One year ago today at this moment, we just received the dreadful call from the pediatrician-- who we saw three hours ago and thought everything looked good with Lucas, the fatigue and paleness was attributed to a lingering cold. The image of the moment when I received the call and how I walked outside to the driveway to let Jianwei hear it with his own ears is going to be something that Jianwei and I will remember very vividly for the rest of our lives.
Today, strangers could not have guessed that Lucas is in treatment for leukemia. He is doing well and we are immensely grateful. His last CBC numbers as of the past Tuesday was: hgB 13, platelets 242 WBC 3.1 ANC 1600. He is still on 40% of the 6MP dose and increased to 70% of the oral MTX dose. He has got IVIG for the second time 2 weeks ago as his IgG level rose from 220 to 360 -- but still below the 560 threshold. We have changed weekly finger poke to every 10 days, and most recently to every two weeks. He hasn't missed a school day for almost 2 months! We signed him up for full-time preschool starting March. His new teacher is a young American born Chinese lady who can speak some Mandarin. Hopefully that will help him to catch up with age-appropriate development. He hasn't grown a whole lot since September -- still just above 92cm, which is below 5th percentile for his age. His appetite is unpredictable but usually okay. He has gained weight -- mostly because how diligently my dad has been cooking.
I very much appreciate how my work environment continued to be friendly as well as interesting. My time at work is usually very busy and somewhat demanding, but I manage to not to work over 40 hours a week. It's rare to have a workplace that offers real opportunity in career development while maintaining work-life balance from top-down. For that, I feel immensely grateful as well.
Every evening I enter our house through garage, I can smell the delicious meal that my dad is preparing. I'm so blessed to have my parents here to help out! I do plan to give my parents a break in the spring -- concurrent with Lucas starting full-time preschool. Hopefully Lucas will stay healthy and we will be able to handle it (it will be the first time we do not have help from grandparents ever since Lucas was born).
Lucas and Alex have played a lot more and a lot better just over the past month. There are still places that I go with Alex alone without Lucas. Alex and I went with his friends to Zoo for the first time in the past year in early November (it's not safe to Lucas to be close to animals). I will take Alex to see Nutcrackers tomorrow. We did take both kids to Jianwei's workplace holiday party on Wednesday. Very few people take kids that young to workplace holiday parties and the coworkers all commented on how well-behaved Lucas and Alex were. I guess they are pretty good boys after all. This is the third consecutive year that we take the boys to that holiday party (that might be the only event we are doing so consistently). We were quite brave to take them there when they were 3 and 1.5 two years ago. We indeed enjoy going to places with kids. I can't wait until they get bigger and we get to travel to many different places.
I think the readers all agree that no news from me is good news. If I don't write an entry before Christmas -- may you have a wonderful holiday and best wishes for you and your family in 2014. Most importantly, stay healthy!
Subscribe to:
Posts (Atom)