Email Archive - Subject Line: Dr. Colman called today

Tiffany

<tiffany.g.ng@gmail.com>

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Mar 27, 2009, 10:42:43 AM

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to Kelly Chen Kwock, Yvonne Ng, Kenbow Chen

Summary of yesterday's meeting with Dr. Colman and this morning's phone conversation.

• Pathologists did not have a final diagnosis of Anderson's frontal lobe tumor yet (as of yesterday's appointment).  He said that it's more difficult to diagnose because it's not the normal, everyday GBM.
• Without a diagnosis, Anderson will not qualify for clinical trials.
• Phone call this morning-> They have a final diagnosis of his tumors and they are not really GBM.  They are progressions of Anderson's original tumor, the anaplastic ganglioglioma.  The cerebellar tumor has progression more on the glioma side, the frontal tumor has progression in more of the ganglion/neuronal component.  I forgot to write down the actual name, but he said something like astrocytoma.  We'll have to request the report to get the actual name.
• Because of the diagnosis, Anderson doesn't qualify for the GBM trials at MD Anderson
  
• He suggests:
• MRI of the spine and a lumbar puncture - to see if there are any other areas that need to be addressed and/or any other tumors there.  The Lumbar puncture will tell us if there are any cancer cells in his spinal fluid.
  
• Radiation to the frontal area, pending records of Anderson's last radiation at UCLA.  (Kelly, do you think you can ask Nanette/Stacy to fax MD Anderson the Radiation reports Fax: (713) 794-4999 to neuro-oncology?  They need to know exactly what was given and where it was given in the brain so they don't overlap areas and also so they don't give Anderson too much radiation)  The sooner they get those measurements, the sooner they can begin and the sooner we can go home.
• They gave us the option of going back home to do radiation, but driving back and forth to UCLA doesn't seem like something Anderson wants to do right now.  We talked about it and we'd like to stay here for the radiation treatment, and as well as do the PT/OT/speech pathology at MD Anderson.  We feel that we are treated better here and we're not constantly frustrated by the long waits, the inability to speak to a doctor, and the general inefficiency of UCLA.  Not to mention Westwood traffic. 
  
• Wait on the chemo - they feel that if the tumor responds to radiation, that the addition of the chemo would only be toxic to the body and reduce Anderson's quality of life.  They would like to continue to monitor closely after the radiation and will start on chemo if radiation doesn't work or after it stops working.
  
• For us to do:
• We can work on doing the supplements again to build up Anderson's strength, his cells, and his immune system.  We can take the OPC3, the veggie/fruit pills, and also some other supplements that Dr. Yen Lai suggests to us from the genetic tests that Anderson did.  
• Make sure the records get to MD Anderson asap.
• Request the reports (when they're ready) and possibly get second opinions.
  
• Continue to pray. 
  
• Encouragement from Judges 7:2-7
• 2 The LORD said to Gideon, "You have too many warriors with you. If I let all of you fight the Midianites, the Israelites will boast to me that they saved themselves by their own strength. 3 Therefore, tell the people, 'Whoever is timid or afraid may leave and go home.'" Twenty-two thousand of them went home, leaving only ten thousand who were willing to fight. 4 But the LORD told Gideon, "There are still too many! Bring them down to the spring, and I will sort out who will go with you and who will not." 5 When Gideon took his warriors down to the water, the LORD told him, "Divide the men into two groups. In one group put all those who cup water in their hands and lap it up with their tongues like dogs. In the other group put all those who kneel down and drink with their mouths in the stream." 6 Only three hundred of the men drank from their hands. All the others got down on their knees and drank with their mouths in the stream. 7 The LORD told Gideon, "With these three hundred men I will rescue you and give you victory over the Midianites. Send all the others home."
• Anderson and I are encouraged by Gideon's story from the Bible and see parallels from the plight of the Israelites being oppressed by the Midianites.  God is closing the doors on man's strength and man's ability.  God told clinical trials and chemo to "go home" and now we're left with just 300 men to fight the war (radiation).  Although it may seem impossible for us to have victory with only 300 men (just radiation) on our side... God will save us and all the credit and glory will be from God and not men. 
  
• Anderson and I both struggle with the situation, but we are at peace and have faith that God will rescue us and give us victory.  So don't worry about us.  We're going to be OK.

<3,
Tiff

Monet Elmore

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Mar 27, 2009, 11:58:37 AM

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to prayers-for-anderson@googlegroups.com

Hey Tiff! Thanks for sending so many thorough updates.  We are thinking of you two and praying for you every day.   Love, Monet --- On Fri, 3/27/09, Tiffany Chen <tiffan...@gmail.com> wrote:

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Tiffany

<tiffany.g.ng@gmail.com>

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Mar 29, 2009, 11:44:31 AM

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to Prayers for Anderson

Hi everyone,

This weekend

• We moved into the extended stay apartment.  It is fully furnished and it's cheaper than the hotel... although it doesn't have some of the conveniences that we've grown used to... but we're learning to manage.  It is much quieter here and the rooms are brighter and more open. Anderson is more comfortable here.  
• I'm looking fwd to getting the key to the fitness center so I can work out and also so Anderson can maybe use the exercise bike to exercise his legs without having to stand or balance himself too much.
  
• Our address is:
• 2255 Braeswood Park #2316, Houston, TX 77030
• Call us on our cell phones, but if for some reason you can't get through, the unit phone number is XXXXXXX
  

Anderson

• He's been feeling... up and down.  Sometimes he feels good and wants to eat and go out, most of the time, he's tired and wants to rest.  
• Encouragement - he still needs lots of verbal encouragement.  This is not my forte but I'm trying to be more verbally encouraging to him and praying that God blesses me with wisdom and the words to say.
  
• Last night we did devotions together and journaled.  That was nice.
• He's eating healthy but not restricting his diet too much right now because he needs to eat and gain back some weight.  Right now, his favorite thing to eat is chocolate pudding with banana slices.  We're looking into finding a pizza place with whole wheat crust.  I found a few places, but we're outside their delivery zone.  The only place that would possibly deliver to us is closed on Sundays. 
  
• Supplements: He's taking a multi-vitamin, OPC3, another immune vitamin, mushroom extract, and propolis.  He'll also be taking the vegetable/fruit powders and the Korean grain drink. We also have resveratrol to fit in somewhere in the day too.
  

Next week:

• PT/OT MWF one hour each.  Pray that Anderson does well and that he starts to see improvements.  It's encouraging to him when he sees improvement and when I point it out to him.
• Monday - speech pathology and an appt with the radiation oncologist.  Pray that the appt with the radiation oncologist goes well and we can start ASAP and come home ASAP. 
  
• Thursday - MRI of the spine.  Pray that these results would be clean and show no additional tumors on the spine.
  
• Next Monday - Lumbar Puncture - pray that the results would be clean.

Praises:

• The new apartment - it has a washer and dryer, lots of windows and natural light, and a little more room for us to move around.  MUCHO praise for the washer/dryer.  I went 2 weeks on maybe 4 days worth of clothes.  For some reason, Anderson has a LOT more clothing here than I do even though he wears a lot less.  He's only been in pajamas.  Anyway, I feel SO much better with clean laundry and our closet smells very nicely of laundry detergent.  Also, the new apt has huge walk-in closets for both bedrooms.  I like being able to put away things in the closet.  It's nice. 
  
• Car - it's nice having my car here.  It's also nice having my brother here to drive Anderson's parents around.  They're surprisingly pretty high maintenance.  I guess they're used to having lots of things and services nearby.  I'm fine knowing there's a target down the street.  They need to go to the market a lot, go to the salon, go get this and that... it's just nice that my brother's here to do that.
• Internet here works - they only gave us one mobile broadband device.  Yesterday, we thought we'd have to wait until Monday, but we found out it works today.  PTL!  Pray that my brother can fix the network so that we can all be online... or on Monday, pray that we can have another device so both me and Anderson's dad can be online at the same time.
  

Pray for:

• Transportation - The leasing agent has offered to drive us to appointments... like our own personal shuttle.  This would make things easier for us and also wouldn't put such a burden on my brother, me, or Anderson's dad to find parking, etc. etc.  Pray that this would work out for us.
• Parents - Anderson's parents are adjusting to life in Texas, but it's more difficult for them to get around and to find what they're looking for.  Pray for their adjustment and also for them to feel at home.  Also pray for our communication to improve.  It has been improving, but it could always be better. 
  
• Continued improvement in health - pray that he will continue to eat, exercise and build up his strength.  Also pray for his mental, emotional, and spiritual strength to improve so that he can pull himself out of bed everyday. 
  

Thank you all for keeping us in prayer, encouraging us, and supporting us!!!

<3,
Tiff

Email Archive - Subject Line: Rehabilitation

Mar 25, 2009, 7:17:01 PM

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to ipray4anderson

Hi everyone,

Last night was our first night of fairly uninterrupted sleep since before the surgery.  I still feel like I could sleep more and Anderson too.  He's been pretty sensitive to sound and light and he's a pretty light sleeper.  I'm going to try putting earplugs in his ears tonight before he goes to bed.

He had one hour each of occupational and physical therapy today.  Today was the first day out of 12 sessions (3x a week for 4 weeks) so a lot of it was getting some history, doing initial assessments, and figuring out what he needs to work on.  Anderson's PT after his last surgery was done at his house and I don't think they did a whole lot of things.  His other PT in CA worked mostly with senior citizens and not specifically with neuro patients recovering from surgery.  I think this will be very good for him.  It will also force him to get outside the apt, which is sometimes difficult if we have nothing scheduled on any particular day.

My dad and brother have arrived after driving more than 24 hours to get to Houston from CA.  They're sleeping right now.  I'm kind of excited to have my car here.  It's familiar and comforting. 

Continue to Pray for:

• Rest - now is the time to rest and to build up strength and endurance again. 
  
• Rehab - pray that he will continue to work hard and benefit from PT, OT and speech pathology (we have that appointment next week).  The speech pathology will work more on cognitive areas that were affected from the surgery... or so they say.  We'll have to see what they say after the assessment.
  
• Health - Pray that he will not get sick, also pray for protection of his healthy cells against cancer cells and for the tumor(s) to never come back.
• Swelling - for it to continue to go down.  He's tapering down the steroids which are supposed to help with the swelling.
• Tremors - He has some tremors/shaking of his neck.  He had it after his 2nd surgery, it got better, but now they're back again and it causes him some headaches now.  His neck tremors when he's concentrating, upset, tired, exerting himself... mostly when he's not at rest.  Pray for relief from that and learning how to manage them better.
• Hope and faith - he needs a lot of encouragement right now.  It helps him feel a lot better when people remind him of his progress, let him know how far he's come, etc. etc.  He's struggling a lot right now and says this is the hardest it's ever been.  He really just needs to hear the words said out loud... that everything's going to be OK.  
• Oncologist appointment - our appointment with Dr. Colman is tomorrow.  Pray that the appt will go well and that we can start treatment soon.
  

He misses all of you.  He tells me here and there how he wishes he were with so and so... how he wants to talk to so and so. 

Thank you for hanging in here with us... we appreciate all of you!!!  THANK YOU!

Tiff

Tiffany

<tiffany.g.ng@gmail.com>

Mar 26, 2009, 9:04:23 PM

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to ipray4anderson

Hi all,

Once again, thank you for your prayers!  It's really encouraging to see the 24/7 prayer schedule and all of our church family lifting us up.  Thank you!

Today we had an appointment with the oncologist, Dr. Colman.  He was pretty nice (but not as cool as Dr. Weinberg...).  He told us that he wanted to discuss Anderson's case at the tumor board today and that he'll call us back with any ideas that the experts come up with.

For now, Anderson will be doing/getting:

• MRI of spine, and perhaps a lumbar puncture.  Please pray that this MRI shows no other tumors in the spine and if we do the LP, no cancer cells in the spinal fluid.
• Radiation to the frontal lobe area - Anderson has previously had radiation to the cerebellum only.  We will see the radiation oncologist and he will decide what will be best for Anderson.  Please pray that UCLA sends the radiation reports QUICKLY so that we can proceed with treatment.
• Chemo afterwards. 
  
• Pathology - the doctors are having a more difficult time diagnosing Anderson's tumors.  They tell us that it's not the everyday-average-run-of-the-mill Glioblastoma Multiforme.  Without a definite pathology, Anderson will not be able to enroll in the clinical trials at MD Anderson.  Please pray for the pathology report to be finalized soon.  Also that Anderson would qualify for clinical trials.  

Please pray for:

• MRI's -  there may be another possible lesion visible on the MRI.  It's very very small right now, but please PLEASE be in prayer that it's not another tumor.  And if it is, that Dr. Weinberg can use the laser therapy and zap it away.  Also pray for no regrowth of the resected and laser-ablated (did I just make up that word?) tumor.  There is still some inflammation surrounding the cerebellum where the laser was used.  Pray that that inflammation and swelling goes down so that the doctors can truly see what is left.  
• Hydration - pray that Anderson will drink more fluids and maintain proper hydration.  Also pray for some "movements".  I think the lack of fluids contributes to the lack of "movement".  
• Healing of sores - Anderson has a couple of sores possibly from the grounding pads used during the surgery.  He was laying on that side for 15-16 hours.  Pray for healing of those sores..might be more like blisters.  At first I thought they MIGHT have been pressure sores, but they blanch when I press on them, which means they're getting blood flow.  They're healing very slowly... but they also cause him pain when he tries to sleep on that side. 
  

Some praises:

• Anderson went out of the hotel room to happy hour today.  I told him that he really really made my "hour" happy by coming out to get burgers at happy hour.  The hotel has happy hour M-Th around dinner time where they have free food and drinks.  He ate a burger, little bit of potato salad, some macaroni salad, ruffles, a banana, and two oranges... and a glass of water.  We came back to the hotel room after chit chatting a bit (with my brother, dad, and Anderson's parents) and then he drank a big glass of milk with some korean ground-up grains mixed up in it.  He still wants some chocolate.  He's been craving chocolate.  We both agreed that he should go off his super healthy diet for a little while and gain some weight.  He lost 5 pounds while he was in the hospital.  I'm sure the steroids aren't helping either.  I get really excited when Anderson eats a lot.  :)
• Anderson took a shower today.  I helped a lot, but he was able to stand and hold onto the shower bar.  It's something small, but it's progress and it makes me really happy that he's trying.  Also that he's cleaner. 
  
• He's trying to do some leg exercises to strengthen his legs.  I'm thinking of maybe getting him some of those long rubber bands so that he can do some resistance exercises.  It also makes me really happy that he's trying to be proactive and do some "homework" in between PT sessions.  I'm hoping the exercise will also help give him some endorphins and help him feel better and more positive. 
  
• He likes talking to me.  :)  I think he'd like to just sit in the dark and talk to me all day long.  He's been more chatty.  That usually means he's in a better mood... or at least has the energy to talk. 
  

Alritey... I guess I should end this super long email now...

TTYlaters...
Tiff

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Tiffany

<tiffany.g.ng@gmail.com>

Mar 31, 2009, 2:17:00 PM

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to ipray4anderson

Hi everyone,

Sorry for the long gap since the last update.  We didn't have many appointments since last Thursday and we had a temporary lapse in internet over the weekend.

So since the last update:

• We've moved into an apartment.  It's a 2 bedroom 2 bath across the street from the hotel we were staying at.  We're living with his parents now and my brother's also here with us for the time being.
• Our mailing address is:  2255 Braeswood Park Dr APT 2316, Houston, TX 77030
• I'll probably check the mail every few days in case you wanted to send cards or anything for Anderson.
  
• We had an appointment with the radiation oncologist and Anderson will be starting radiation next Tuesday.  We'll be here for the six weeks it takes to complete the radiation.  More time in Houston! 
  
• Anderson got his staples removed today!  

Anderson...

• has been feeling overall decent.  I can't say it's the greatest, but it's not the worst either.  He has his ups and downs.  He's really tired and although he wants to do things, he doesn't have much strength to do them. 
  
• he's still sensitive to sounds, lights and too much going on at once.  He hasn't been able to watch TV and doesn't like taking phone calls quite yet.  (his phone is off btw... I might turn it on in case the docs try to call us but he won't be answering his phone for the time being)
• has been eating more and enjoys chocolate pudding with banana pieces mixed inside.  I bought lots of different kinds of pudding for him to try.  He says it's the BEST DESSERT EVER. 
  
• still eats fairly healthy.  His mom cooks for him, takes vegetable and fruit powders, multi vitamins, antioxidant supplements and such. 
  

We have a lot of appointments coming up... and we're going to the hospital almost everyday.  That's pretty much what we're here to do in Houston so we're going to do that.

Thanks for asking about us.  I'm doing OK.  Kind of tired at times, but Anderson's here to rest so I'm trying to as well.

<3,
Tiff

p.s. I have dreams that various friends are visiting us here in Houston... I think that means I miss you all!  Happy Tuesday!

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Tiffany

<tiffany.g.ng@gmail.com>

Apr 2, 2009, 8:18:10 AM

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to ipray4anderson

Hi all,

Updates will be every few days now that he's out of the hospital and not TOO much goes on.

• I think probably the biggest and scariest thing that happened yesterday was that Anderson fell in the bathroom and chipped his tooth.  I was really REALLY scared and I felt REALLY bad for not being there to catch him.  Thankfully, we were able to cancel PT/OT and we went to the dentist instead.  My brother found a dentist on 1-800-dentists and everything worked out very nicely.  It just so happened that the dentist who specializes in cosmetics and orthodontistry(<--not a word, huh?) was there.  She's only there on Wednesdays too.  And they weren't busy so they took us in right away.  We got it fixed in an hour and he was back home resting soon after that. 
  
• The biggest lesson that both of us learned from all of this is that we need to be more careful.  He's agreed to use the walker to get around when I'm not there and I told him that he NEEDS to call me when he's getting up and not to feel bad about bothering me or waking me up.  A fall isn't worth it. 
  
• We've also learned that even though things might not turn out the way we wanted them to, that God still hears us and is taking care of us.  He works everything out for us and we never cease to give Him praise for everything He does.  His ways are better than ours and His understanding is also better than our own. 
  
• I also did every single neurological check that I could think of and it appears that he's OK.  I also let his surgeon and oncologist know about the situation and left a msg for them to let us know if they'd like for us to come in and they haven't said anything yet.  Anderson even humors me and lets me check his pupils anytime I want.  I wish I had my penlight though.  And my stethoscope.  So scary.  

Continue to pray for:

• No more falls!  and to be more careful.
• Radiation starts next week.  Pray for his health to stay up during radiation.  Also pray that the tumors do not grow back.
• MD Anderson Doctors - we trust them... but please be in prayer that they won't miss anything and that they would be wise about their treatment decisions.
• Rehabilitation - pray that his neck shaking would decrease, he would get his strength back, would have energy (esp to exercise), and that he would start to enjoy himself a bit.  I need to find ways to make him laugh.  The best I can do is to make him smile.  He doesn't want to watch tv or talk on the phone quite yet. 
  
• More faith and encouragement for him.  He needs a LOT of encouragement, especially from me.  Pray that I would have the right words to say and to keep them flowing. 
  

Alritey... it's 62 degrees and cloudy in Houston.  Over & out.

<3,
Tiff

P.S.  some amusing dreams I had.... I dreamt that I got laid off from an office job, I dreamt that I was going to prom again but this time with my elementary school friends (all grown up), I also dreamt that I was in a school bathroom talking to a friend (Quimbley) while we're... going to the bathroom... and I look down and there are a bunch of packages all addressed to me... dated march 26th mostly from my cousin.  I was wondering why she would leave them in the bathroom and when did she figure I was going to be there to pick them up.  Joyce Lin, you were outside waiting for us to be done.  And we were in NY.  I don't recall if there were toilet seat covers tho.  There was toilet paper tho.

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Tiffany

<tiffany.g.ng@gmail.com>

Apr 3, 2009, 9:27:11 PM

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to ipray4anderson

Hey Everyone,

Thank you for sending your encouragements.  I really enjoy reading them and many of them come at times when they're sorely needed.  Thank you for supporting us while we're out here.  Sometimes it feels really far away, but it does seem a little closer when we hear that you guys remember us and are praying for us.

Blessings

• Printer!  Kenneth & Clara helped us get a printer.  I've already printed my brother's boarding pass, SSN application now that I FINALLY got the marriage certificate, and I might scan a few things if I have the time. 
  
• Anderson's appetite - he asked for Olive Garden today and he ate... almost an entire tour of italy and portobello ravioli.  And 4 clementines.  And a pretty large glass of barley tea.  wow. 
  
• Exercise - he's been trying to exercise more.  The initiative is a good sign.
  
• Rest - he's been getting more rest lately.  :) 
  

Prayer Requests

• Eyes - Anderson's been having more problems with his eyes since the last surgery.  He had the double vision since the 2008 surgery, but for a few weeks now he's been complaining that his eyes aren't stabilizing the images.  His eyes dart here and there pretty briskly and it makes it difficult for him to focus on things or keep his eyes open for very long.  Please be in prayer that his vision would stabilize. 
  
• Safety - We've been more careful since the fall and he's been using the walker to get from here to there in the apt and to go to the bathroom himself.  Pray for continued protection against falls.
• my brother's flying home tomorrow morning.  Pray for his safety as well. 
  
• And pray for our continued safety driving around Houston.  Anderson's dad might be driving my car around... and... well... pray for his and our safety if we're in the car with him. 
  
• Exercise - He wants to exercise his legs, but he doesn't have much strength and his unstable vision won't really allow him to move around too much.  Hopefully we can try using the stationary bike in the fitness center.  He said he'd try tomorrow, but we'll see how his energy level goes.
• We haven't gone to PT/OT all week because either they've canceled on us or we've canceled on them.  Pray that next week would be a better week as far as PT/OT goes.
  
• MRI of the spine - we did that Thursday night... pray that the results would come out clean.
• Lumbar Puncture - scheduled for Monday.  Pray for those results as well.
• um... i checked our appt schedule and we missed a blood draw today.  Oops.  I'm pretty sure it was to check his coagulation prior to the LP.  Probably should call about that one.
  
• Side effects from surgery - pray that he would experience healing from his uncoordination, generalized weakness, vision problems, little bit of swallowing difficulty, and also for the complete healing of his two sores.  One of them is almost gone, the other is taking its sweet time to go away. 
  
• Spirits - that he would keep his spirits up, draw strength from God, and rest his hope and faith in Him.  It's a daily struggle for him.  He needs patience for himself and for his rehabilitation.
• Appetite - thankfully, he has an appetite.  Pray that it would continue and he would be well-nourished throughout radiation (starting next week)

Not too many interesting things going on here... broke a light bulb... OOH... I finished the luggage tag that I was making from the craft kit I got from the hospital waiting room.  They have ziploc bags of crafts and things donated by... some craft ppl organization.  It kinda looks like something out of the 70's but hey... I made it and I finished it.  I will start on my 2nd luggage tag soon.  I'll try to take a pic of it one of these days.

good night & good luck

Tiff