Counts were still too low on 8/8 but rebounded on 8/13. We resumed chemo at 2.5 pills 6MP/week and 2 pills MTX/week and will recheck 8/27.
Lucas started preK on 8/13, same school with Alex in K. Lucas is doing very well! Love love love Lucas's new teacher! So much fun and so much energy! He made his first friend ever at school! He told me about his friend this past Monday. I confirmed with the teacher that his claimed friend does hang out with him quite a bit. This morning, I told Lucas that his friend must be waiting for him and he hurried up out the door. Very happy for Lucas for this important milestone!
Thursday, August 21, 2014
Friday, August 8, 2014
Still trying to figure out the doses for 6MP and MTX
The protocol strictly says steps of 100%, 75%, 50% and 25% will be taken to adjust doses for 6MP and MTX -- not having any text on what to do when the combination of these numbers do not result in ANC in the therapeutic range of (500, 1500). From the data our doctor and I put together, it seems MTX either works very slowly on Lucas, or Lucas's ANC is not very sensitive to MTX. A sweet spot for 6MP is very evident to be between 50% and 75%. I'm so glad our doctor agrees after this counts crash and chemo hold (15 days and counting), we will never raise 6MP to 75% ever again. We can try to do 6MP 50% and MTX 75% and see what happens. There will be three possible outcomes (1) ANC crash again (2) ANC steadily high (3) ANC within range (500, 1500).
If (1), then we will do 50%,50% for both when counts recover, and slowly increase 6MP if counts too high, but never exceed 6MP to be higher than 70%.
If (2), then we will slowly increase 6MP, but never exceed 6MP to be higher than 70%.
If (3), then we will keep that combination!
I'm writing this down so I will suggest this to doctor tomorrow when ANC is (hopefully) above 750. Lucas is doing rather well regardless of the low counts. He has been given IVIG whenever his IGG drops below 300, which happens every 2-3 months. After the one instance of IVIG reaction, it now takes 4.5 hours to finish the IVIG infusion. IV Pentamidine still takes more than 1 hour to infuse and 1 hour of observation afterwords. So we spent a full 8 hours in hospital this past Tuesday (2nd 4-week in Cycle 5).
If (1), then we will do 50%,50% for both when counts recover, and slowly increase 6MP if counts too high, but never exceed 6MP to be higher than 70%.
If (2), then we will slowly increase 6MP, but never exceed 6MP to be higher than 70%.
If (3), then we will keep that combination!
I'm writing this down so I will suggest this to doctor tomorrow when ANC is (hopefully) above 750. Lucas is doing rather well regardless of the low counts. He has been given IVIG whenever his IGG drops below 300, which happens every 2-3 months. After the one instance of IVIG reaction, it now takes 4.5 hours to finish the IVIG infusion. IV Pentamidine still takes more than 1 hour to infuse and 1 hour of observation afterwords. So we spent a full 8 hours in hospital this past Tuesday (2nd 4-week in Cycle 5).
| 6MP (%) | MTX (%) | Comments | |||
| Cycle 1 | 8/5/2013 | 100 | 100 | ||
| HOLD | 8/23/2013 | 0 | 0 | plts < 50, ANC < 500 | |
| 9/17/2013 | 50 | 50 | Restarted oral chemo | ||
| 10/1/2013 | 50 | 75 | ANC 3431, increased MTX | ||
| 10/15/2013 | 50 | 45 | ANC decreased to 784, decreased MTX | ||
| Cycle 2 | 10/29/2013 | 50 | 50 | ANC 2948-no change | |
| 11/19/2013 | 50 | 75 | ANC 3182 | ||
| Cycle 3 | 1/21/2014 | 50 | 75 | ANC 3040 | |
| 2/18/2014 | 50 | 75 | ANC 528 | ||
| HOLD | 2/28/2014 | 0 | 0 | ANC 232-admit for fever | |
| 3/12/2014 | 25 | 38 | ANC 1100, plts 215. Restarted oral chemo | ||
| 3/18/2014 | 50 | 38 | Increased 6MP | ||
| Cycle 4 | 4/15/2014 | 50 | 50 | ANC 2170, increased MTX | |
| 5/13/2014 | 75 | 50 | ANC 2450, increased 6MP | ||
| 6/10/2014 | 75 | 50 | ANC 876, Plts 143 -no change | ||
| 6/25/2014 | 75 | 50 | ANC 570 | ||
| Cycle 5 | 7/7/2014 | 75 | 50 | ANC 1155 | |
| HOLD | 7/24/2014 | 0 | 0 | ANC 186-admit for fever |
Saturday, May 24, 2014
First day at Asian Festival Bone Marrow Registry Drive
First day drive was just as we expected. Marshall and I expect it to be a learning experience with moderate success. We ended up with 24 registered donors that we collected all the information including saliva kits on. The number is inflated by my friends who planned on doing it there ahead of time. Spreading words at the festival real time is as difficult as we expected.
We have a few thoughts.
(1) We will figure out how much it would cost to be outside and how the cost can be covered. Being inside in health screening area is not optimal in terms of the lack of age 18-44 people passing by our small table, and limited freebies options we can accommodate.
(2) In terms of gathering the crowd, balloons with message works really well for one of the sponsor outside. So many people advertise for you all over the park and possibly! Games for gifts somehow have people line up very quickly -- even though the gifts are of nominal values.
(3) Asians really shy away from donate, even when they are obviously second generation Asians. We can possibly run a drive with the theme of "bring an Asian friend" to use their "westerner" peers to help change the mindset.
(4) Asian Festival has a very diverse visitor population. Asians of age 18-44 constitutes a very small percentage.
Overall it's a great starting point -- getting the awareness out. Even if we get many "no thank you" today, we are for sure spreading the word. Many of them obviously never heard of bone marrow registry before! I walked around the festival and met many presenters from different Asian countries. Many of them allowed me to send the electronic version of our drive to their email address. I counted 20 email addresses -- and they said they would spread the word in their own cultural groups.
More to come...
We have a few thoughts.
(1) We will figure out how much it would cost to be outside and how the cost can be covered. Being inside in health screening area is not optimal in terms of the lack of age 18-44 people passing by our small table, and limited freebies options we can accommodate.
(2) In terms of gathering the crowd, balloons with message works really well for one of the sponsor outside. So many people advertise for you all over the park and possibly! Games for gifts somehow have people line up very quickly -- even though the gifts are of nominal values.
(3) Asians really shy away from donate, even when they are obviously second generation Asians. We can possibly run a drive with the theme of "bring an Asian friend" to use their "westerner" peers to help change the mindset.
(4) Asian Festival has a very diverse visitor population. Asians of age 18-44 constitutes a very small percentage.
Overall it's a great starting point -- getting the awareness out. Even if we get many "no thank you" today, we are for sure spreading the word. Many of them obviously never heard of bone marrow registry before! I walked around the festival and met many presenters from different Asian countries. Many of them allowed me to send the electronic version of our drive to their email address. I counted 20 email addresses -- and they said they would spread the word in their own cultural groups.
More to come...
Sunday, May 18, 2014
Busy with the drive!
I'm working with a BeTheMatch professional to host a bone marrow registry drive Memorial Weekend at Asian Festival. We will provide information, answer questions, and process bone marrow donor registry.
Date: Sat. & Sun., May 24-25
Date: Sat. & Sun., May 24-25
Time: 10:00 a.m. - 6:00 p.m.
Location:Franklin Park Conservatory
Asian Festival-Adventure Center
1777 E Broad St, Columbus, OH
Contact Info:
You can sign up online if you are unable to attend:
http://Join.marrow.org/asianfestival2014
"Like" us on Facebook where I will post updates:https://www.facebook.com/AsianBoneMarrow
If you want to sign up to be a volunteer:
http://www.signupgenius.com/go/10C0A4DABAE2CA2FF2-524525?uToken=25EECAFAFB06FE075EC3DFCE02E8
Feel free to forward or post on your social media. Every little bit helps. Thank you for your lifesaving kindness!
Asian Festival-Adventure Center
1777 E Broad St, Columbus, OH
Contact Info:
You can sign up online if you are unable to attend:
http://Join.marrow.org/asianfestival2014
"Like" us on Facebook where I will post updates:https://www.facebook.com/AsianBoneMarrow
If you want to sign up to be a volunteer:
http://www.signupgenius.com/go/10C0A4DABAE2CA2FF2-524525?uToken=25EECAFAFB06FE075EC3DFCE02E8
Feel free to forward or post on your social media. Every little bit helps. Thank you for your lifesaving kindness!
Saturday, April 19, 2014
The Deeper Path
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!
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!
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
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