Rehabilitation

[Tiffany Chen]

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 Chen]

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

[Tiffany Chen]

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!

[Tiffany Chen]

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.

[Tiffany Chen]

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