Radiation to the spine

[Tiffany Chen]

Hi everyone,

It's really hard sometimes to think back that only 9 or 10 days ago, Anderson and I were walking around Houston together.  So much has happened lately that I've barely had time to comprehend it all.  Sometimes I'm at a loss as to what can be said.

We're 27 years old. We've been through 3 brain and a spine surgery in less than 3 years. Sometimes I just can't believe it. 

I've started and stopped this email a few times.. it's been a few days coming.  My thoughts are pretty scattered but I'll try my best to send it all out. 

First of all, thank you for your prayers.  Thank you doesn't even begin to convey our gratitude for all of you who have partnered with us and have really journeyed together with us while we've been here in Houston.

So, I was reading the other day and I came across a verse that really moved me. 

" The priests and Levites had the last word: they stood and blessed the people. And God listened, listened as the ascending sound of their prayers entered his holy heaven."  2 Chronicles 30:27 (The Message)

I stopped reading after I read that and I imagined how pleased God was to hear the prayers and praises of His people. And I thought about how everyone that's praying for us and how pleased He must be to hear them.  Thank you.  :)

But you can't really grasp the significance of this one sentence until you understand all that had happened prior to that.  The Israelites were a pretty rebellious people. They just go through cycles of going to God, falling away, and making God really angry at them for their blatant disobedience.  And then finally, some good leadership comes around through King Hezekiah who brought his people back to God.  I might be semi wrong here, but this is how I remember it... the King wanted to celebrate the Passover, but all the priests and stuff... they weren't ready so they postponed the celebration.  And when it came time to do the sacrifices and purification stuff, the priests still weren't ready... so I imagined it was a little chaotic... but they pulled through and got themselves ready last minute.  So when it came time...even still, some of the people weren't ready so the priests had to do the sacrifices on their behalf.  But after that, Hezekiah prayed and (verse 20) God responded to Hezekiah's prayer and healed the people. After THAT, there were days and days of celebrations and worship.  And there was JOY among the people.  And THEN... God listened, listened as the ascending sound of their prayers entered his holy heaven. 

So I see a few parallels here and there with the Israelites and us.  Anderson's situation kind of came so suddenly that I think it took a lot of people by surprise and maybe we weren't ready.  But everyone came, the sacrifices got done, the king prayed and God healed the land and everyone celebrated... and the prayers went up to heaven. 

I still feel like my thoughts are disjointed.  I think I can't write very well when the sun's out.  Too many distractions...

I wanted to encourage everyone that through your prayers... you're not only praying for us, but you are also drawing closer to God in your own walk and hopefully you are learning to commit your own worries, situations, and everything else as well.  OK there's too many people coming in and out and I can't think straight anymore...

Prayer requests for Anderson

• Radiation - radiation will resume tomorrow (Monday) on his spine.  They waited 7 days after his spine surgery so that the wound on his back would have a little time to heal.  They would have recommended to wait 21 days before starting radiation again, but they wanted to resume radiation as soon as possible.  Pray that it would be effective and that the side effects would be minimized... his surgical wound would still continue to heal, fatigue would be minimized, swelling minimal...
• MRI - I still haven't heard the results from Anderson's last MRI, but apparently the doctor talked to Kelly and she'll tell me about it later.  I guess nothing urgent... but still pray about that and also the results of future MRI's
• Electrolytes - his electrolytes are a little bit off.  They've been supplementing him here and there... hope it regulates
• Elimination - continue to pray for management of the bladder and bowels.  The bowel management team will be coming around on Monday as well.  His catheter had a clog in it... but they changed it out and it's free flowing now.  They put him on some antibiotics too because he had a little fever this morning.  It seems OK now but please pray that the fever is resolved now.
• Numbness - he's still numb from the chest down.  He also says that the back of his arms and his fingers are a little numb too.  :(  Pray that it would stop spreading.  but PTL that progression of the numbness seems to be slowing down compared to when we first found out that he had the tumors on his spine.
• Infection - pray against development of infections. There are so many things...
  
• Immobility - he's wearing the compression stockings and has the sequential compressions on.  Pray for good circulation and pray against formation of blood clots.  Also pray that he doesn't develop pressure sores from lying down all the time.
  
• Spirits - pray that we would all continue to lift up our every thought and care to God and rest our hope in Him.

K... gonna end this now.  Hope everyone's having a great Sunday...

<3,
Tiff

[Tiffany Chen]

Small request... might seem kinda silly but...

Anderson's glasses have been misplaced.  We think they may have been rolled up and taken out with the laundry. :(  We've called here and there hoping that someone will find them. He does have backup glasses, but I think we're more sad that we lost the black eye patch that I hand-made him.  His backup glasses does have the prototype eye patch that I made... a really crude white one.  Anyway, so basically, it's not huge, but it's something that we hope will be returned to us and if you could add that to the prayer list, we'd be very much obliged.  Thank you!

<3,
Tiff

[Tiffany Chen]

Hi everyone,

 

I haven't checked my email in a few days... might be slow to respond to them but i'll try to get to it eventually. 

 

Anderson has finished 2 rounds of radiation and he had his first acupuncture treatment this afternoon.  Not sure if either one is working/helping yet, but we'll probably continue radiation for another 13-15 cycles and acupuncture twice a week. 

 

We've been bombarded with family visitors lately.  Anderson says that he's glad that he could bring all his cousins together again.  He's had a good time catching up with them, but sometimes gets overwhelmed.  He doesn't have the strength to talk over a whole lot of people. 

 

K... seriously a short short update, but I just thought I'd send something out.

 

Still be in prayer for

• radiation therapy - that it would be effective and minimal side effects
• appetite - that he would continue to eat/swallow well
• infections - pray against any infections that could develop in the hospital
• paralysis - he's still pretty numb from the chest down. 
• elimination - he's going to be starting a bowel management program tomorrow. he's a little wary about that, but just pray that it goes well.
• spirits - he prays quite frequently and we still get to talk here and there when we're alone. we enjoy being alone with each other and just chit chatting and being friends. tonight we listened to some songs on youtube (which was acting up on us... or maybe internet is just too slow here). He does tend to get frustrated at people sometimes and he likes to vent it out on me... but it's OK.  I listen and we talk about it and he usually feels better. we're still each others' best friends and we love spending time with each other, regardless of the circumstances.  

 

Alritey... night!

Tiff

[Tiffany Chen]

Hi all,

The days seem to go by faster when we don't have as many medical "surprises" to deal with.  I can't believe it's already Friday and another weekend's coming!

Things seem to be going fairly well.  He doesn't have too many worsening symptoms, but we do have a few new prayer requests for you all.

• Radiation - only 5 more treatments!  I didn't know that they had counted the 3 treatments he received prior to surgery as part of his 13 total treatments.  So far he's been handling it pretty well.  He does have some dry mouth, but he's been eating pretty well.  I actually think he might have gained weight. Who knows. 
  
• Side effects - his higher dose steroids causes high blood sugar and it's probably (as well as the radiation) is lowering his blood counts, which leaves him at higher risk for infection... and today...
• He had a little fever in the morning.  They're doing blood cultures, urine cultures, consulting infectious diseases... he was already on antibiotics from the last little fever he had so... yeah.  Hopefully, they figure out why he's got the fever and fix that.  The fever's gone down since the morning, but it's still a cause for concern.  His temp is 37.4 C right now.  Little high, but it was uh... 101F something this morning.  Sorry... I don't convert C to F well in my head.  I just know that 37C and 98.6F is normal. 
  
• Electrolytes - his sodium is still a little low today, but better than yesterday.  It's really important for his sodium to be within normal limits because if it's too low, it can cause brain swelling which is bad bad bad for my husband.  They're putting him on a 1.5L per day fluid restriction to figure out the sodium issue.  They think he has SIADH.  He doesn't seem to have any confusion or seizures or anything like that so that's good.  They also said that low sodium is pretty common in the hospital. 
  
• Low BP - his BP is occassionally low... like in the 80's sometimes whereas he's normally around 110-115 systolic (the first number).  Pray that it regulates and/or they figure out what's going on with his blood pressure. 
  
• Sleep - he hasn't been getting very good rest lately.  The docs have ordered some ambien for him so maybe he'll take that tonight and get some better sleep. 
  
• Rehab - After radiation and if he's medically stable, they'd like to transfer him to either a rehab floor or to a facility that specializes in neuro rehab. They do need PT/OT notes to determine whether or not he qualifies and PT has only come once and OT hasn't come at all.  Pray that PT/OT come so they can properly evaluate him so they can determine whether or not he meets the criteria for whatever facility.  They also need to coordinate his treatments if he goes to a different facility... and blah blah... we're not quite there yet but it's something that definitely needs to get worked out before he ends radiation next week.
• Tumor progression - pray that all of them would not grow, grow back, or get bigger. He's got 2 sites in the brain, one larger tumor in the neck/upper back, and a few small ones near his tail bone.  
• Special bed - the docs have ordered a special bed for Anderson so that it will prevent getting bedsores.  It's been the 2nd day waiting for it to come.  Just pray that it comes sooner rather than later.
  

Ho hum... when I list it all out like that, it seems like things aren't going that well but they're really not that bad... especially compared to what we've been through in the past 2 weeks. 

The glasses haven't turned up yet, but I was able to make him another patch using... black opaque tights, a plastic medicine cup and a sewing kit. :)  Also, the hospital MIGHT pay to replace his glasses... we're in the process of working that out with the patient advocate. 

Once again, we can't thank you enough for all for your prayers for us.  We are completely and totally covered in prayer and we're still in awe at how long and how hard our friends and family have been praying for us.  It's so awesome to see how everyone... even people who don't know us, have never met us, and probably have never even seen a picture of us... come together like this to support 2 insignificant kids (and our families) out here in Houston.  Thank you so much. 

So you're free to stop reading here if this email has gotten too long for you.  I just felt like sharing some thoughts that I've been having lately about prayer.  It isn't easy to read or admit or even put out in public, but it's been on my mind a lot lately and if you wanna know what's going on with me and Anderson on more of a personal level... I'll leave it out here for you to know.

I lie in bed (or this convertible chair) every night and ask God if He's going to take my husband... ask God for healing... ask God for a miracle...I ask and ask and ask all day long, in every free minute that I can.  Anderson and I both recognize that the days we've had since we found out that there were tumors on his spine have been miracles in and of themselves.  It's been over 2 weeks, I think, since we found out and I know that we weren't even sure that we'd make it to June... but here we are.  Every night we thank God for this day we've just completed and ask for another day together... and sometimes we feel like He's given us so much, but we still want to ask for more. 

I've been reading The Message (the Bible in contemporary language...) and it kinda helps me rethink verses that I'd previously just memorized or heard so many times that I don't really think about their meaning much.  So this version of this verse is pretty common and well-known... the effective and fervent prayer of a righteous man avails much (James 5:16).  When I looked it up in The Message, this verse came in a cluster. 

 ^16-18Make this your common practice: Confess your sins to each other and pray for each other so that you can live together whole and healed. The prayer of a person living right with God is something powerful to be reckoned with. Elijah, for instance, human just like us, prayed hard that it wouldn't rain, and it didn't—not a drop for three and a half years. Then he prayed that it would rain, and it did. The showers came and everything started growing again.

This is both encouraging and challenging for me.  Encouraging that miracles can happen when we ask and pray, but also challenging about the confession part and also the waiting.... but mostly the confession. It's repeated many times that prayer and confession go hand in hand and you can't just do one without the other.  For example, another verse... If my people, who are called by my name, will humble themselves, and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and will forgive their sins and heal their land (2 Chronicles 7:14).  Looking it up in The Message... it came out as this paragraph:

 ^12-18 God appeared to Solomon that very night and said, "I accept your prayer; yes, I have chosen this place as a temple for sacrifice, a house of worship. If I ever shut off the supply of rain from the skies or order the locusts to eat the crops or send a plague on my people, and my people, my God-defined people, respond by humbling themselves, praying, seeking my presence, and turning their backs on their wicked lives, I'll be there ready for you: I'll listen from heaven, forgive their sins, and restore their land to health. From now on I'm alert day and night to the prayers offered at this place. Believe me, I've chosen and sanctified this Temple that you have built: My Name is stamped on it forever; my eyes are on it and my heart in it always. As for you, if you live in my presence as your father David lived, pure in heart and action, living the life I've set out for you, attentively obedient to my guidance and judgments, then I'll back your kingly rule over Israel—make it a sure thing on a sure foundation. The same covenant guarantee I gave to David your father I'm giving to you, namely, 'You can count on always having a descendant on Israel's throne.'

So as tempted as we both are to just ask and beg that God would perform a miracle on Anderson and heal him completely... I can't ignore that effective prayer doesn't happen without righteousness.  I'm thankful that Anderson and I can be each other's behavioral and spiritual accountability... that I can verbally confess to him without fear of judgment.  But sometimes there are things in our lives that we've pushed down and ignored... or have grown accustomed to living with.... or things that have just been a certain way for so long that we don't even know if it's possible to change it.  These are things that the two of us are also trying to work on with God alongside our pleas for healing.  We hope that you can also partner with us, pray for us regarding our journey towards righteousness, and also learn and know more about us, more than just a laundry list of requests. 

I'm also going to try to attach pictures of us here and there so you can see us too.  This picture is of us with our AACF IM softball team... I think after the last game... back in 2003.  We were so skinny back then...and Anderson looks like a thug.  HA! 

Oh and if you've never seen us before and wouldn't be able to find us in a group shot... there's a pic of the first time I met Anderson's parents attached too. 

<3,
Tiff

[Tiffany Chen]

Hi everyone,

Nothing huge happened since yesterday... actually, the two of us kind of slept in and nothing much happened medically.  My parents flew in, Monet and James came in after the long road trip from Colorado... and I went out for the first time in like 3 weeks.  I went to Target with my mom and then we got spa pedicures.  I wanted to enjoy my outing more, but somehow being away from Anderson... even for a few hours... I just felt kind of numb.  I think we both come alive again when we're with each other. 

A few changes since the last update... Friday was a busy busy day for us. 

• The special bed arrived.  It's supposed to help relieve pressure on his back and bony prominences.  He says that it feels better than the other one. I do notice that he slides down a lot more, but at least he's more comfortable. 
  
• Fever hasn't come back.  :)  yay!  It takes a few days for blood cultures to come back... hopefully they're negative.  We haven't had hordes of doctors coming in since the fever on Friday so I think that's a good sign. 
  
• Ambien - tonight is his 2nd night on ambien.  He did wake up all chatty Saturday morning.  He's snoring right now.  I hope he's getting good rest.  I konked Saturday morning too so even if hordes of doctors had come, I think I would have missed it all because I was asleep and kelly says I was snoring too. 
  
• BP's still low. 
  
• Sodium... haven't heard about his latest labs, but he's still on his 1.5L fluid restriction.  I hope his sodium's getting better.  Sometimes no news could be good news, but I'll try to remember to ask tomorrow.
• Latest MRI - his latest spinal MRI done on Friday night showed that the spinal tumor has gotten a little bit (milimeters, she said) larger, but that fluid was still flowing better than since before his surgery.  The doc also said that it was good that he doesn't have any new symptoms of numbness.  There might have been more news but I think I was groggy when I heard this.  That's all I've got to report.
• Radiation - he's only got 4 more treatments left.  I think his swallowing or his appetite might be affected... or maybe he's just getting sick of hospital food, but he isn't eating as much as he was last week.  His mouth/throat has also been dry so that makes him uncomfortable.  The fluid restriction is also making him feel like he can't drink everything he wants to drink.  Pray that we figure out something for the mouth dryness.  It's not tooooooooo toooooo bad right now but I don't think it'll get any better while he's still on radiation. 
  
• No rehab this weekend, I guess.  They said it was a possibility that they could come on Saturday, but I guess not.  I don't think this particular floor's big on rehab.  Humph. 
  

He was kind of tired today, but we were still able to get a good chat in today and I was able to read him a little bit of this thing my parents gave me about God's word and healing.  i read him 2 or 3 of the points in the paper before he got tired and then we did our nightly prayer before he sleeps.  Tonight, we cried.  We shed our tears to God and then we talked some more.  I like nighttimes with my husband. 

So... praying that brings us to tears... kinda reminded me of something I read yesterday or a few days ago or something from Ezra 9 (I'm going through the Old Testament right now with a friend so that's why all my thoughts are coming from there...just fyi)

 ³ When I heard all this, I ripped my clothes and my cape; I pulled hair from my head and out of my beard; I slumped to the ground, appalled.

 ^4-6 Many were in fear and trembling because of what God was saying about the betrayal by the exiles. They gathered around me as I sat there in despair, waiting for the evening sacrifice. At the evening sacrifice I picked myself up from my utter devastation, and in my ripped clothes and cape fell to my knees and stretched out my hands to God, my God. And I prayed:

K.  Whenever I used to read about how news could cause someone to rip their clothes and rip their hair out and put on scratchy clothes and sit on dirty ashes and rob you of words and make sadness ooze out all around you... I always wondered what kind of news would bring me to a place like that.  I know that Ezra was grieved about the sins of the Israelites and our situations are different, but if I were to ever come to a place where news could bring me to crashing down to utter devastation... it was when the doctor came to tell us that they found a large tumor in Anderson's spine... May 22nd.  If I had a beard, I think I'd definitely be pulling hair out of it.  I didn't tear my clothes tho. 

I wailed.  I didn't care that we were in the hallway of the emergency department, or that it was 2am and quiet in the halls.  I threw myself on Anderson and we lay there on that stretcher in the hallway and we wailed.  The only words that I could get out were "oh God...".  Over and over and over again... "oh God."  Maybe more like "ooohhhoohoohoooo Ga-ah-ah-ah-ah-ah-d..." in between the convulsive sobs and loud, snotty sniffles. 

That was 16 days ago.  At that time, neither of us thought that making it to June was something that we'd get to see together.  But here we are.  Still here.  Still together and still crying out to the same God... now from the private room and a slightly bigger hospital bed. 

So if I cry out like this over something so near and dear to me... what would it take for me to cry out like this over ths sins of my people... or even the sins of a nation?  I don't know.  I'm so out of it politically... we were playing Cranium with some friends a while back and I didn't exactly know who the vice president of the United States was.  Pathetic, I know.  I fail at street smarts. I'd probably fail at Cash Cab too.  Definitely can't play Trivial Pursuit.  But I think it would be good, and quite sad, to be that moved over the sins and plight of our nation.  Or even the sins of the church. 

Anyway, it was just a thought i had.  Something outside of the hospital; something having nothing (or not much) to do with me or Anderson, but sort of thinking outside to the grander scheme of things. 

I stopped writing this email and now I'm coming back to it right now... 3am because Anderson suddenly woke up and said that he wanted to go downstairs with me and get a smoothie from the cafe 24/7... and kind of "joy ride" around the hospital.  I asked the nurse and she wouldn't let us.  She said that she didn't think it was safe and she didn't want to lose her license.  Anderson said that he promises that she won't lose her license if she'll just let us go...  My husband's so funny.  We had to settle for opening the blinds and pretending we were outside looking out from our view on the 12th floor. 

Pictures of us:  Before we had webcams, I think we took pics of ourselves with regular dig cams and emailed them to each other.  That solo of him is at their family's apt in Brazil.  In case you didn't know, we spent the first 3 years of our relationship long distance.  He'd spend 3 months in Brazil and 1 month in the states, then back to Brazil.  We only saw each other 3 months total in a year.... until he was diagnosed in 2006 with the first brain tumor.  He's pretty much been in the U.S. (and closer in proximity to me) ever since.  The other picture is of us at Brazilian BBQ... :)  We love brazilian bbq.

<3,
Tiff

[Tiffany Chen]

Hey everybody,

Another Monday.. another week.  :)  Happy to be here with my husband and happy to be writing to all of you once again.

So... some changes in requests again:

• Radiation - only 2 more or maybe 1 more treatment left.  I guess I've calculated wrong or something, but Anderson might be done with radiation tomorrow or Wednesday.  This might be a little hard for us because the oncologist said that after radiation's done, Anderson might need to move to a rehab facility or somewhere else because he no longer needs acute care.  Good news, but... where are we going to go?
• Rehab - We've had 2 people come in... one is the rehab doctor at MD Anderson and another is someone from a rehab facility nearby called TIRR. They say that Anderson needs to be able to tolerate 3 hours of therapy per day in order to qualify for rehab in the hospital.  He's been sleeping a LOT lately and the therapists haven't really been coming TOO often so... I dunno what they're going to decide.  TIRR came by and asked us to tour their facility.  One main drawback that she told us was that he might have to share a room with 3 other people.  This is NOT good for him because he's such a light sleeper and so sensitive to light and noise that he probably wouldn't be getting good rest if he had to live with roommates.  So... I guess we'll have to keep exploring options but I have no doubts that wherever we end up, will be God's provision for us. 
  
• PT/OT - not extensive therapy today, but they did come around so I'm really glad about that.  And Anderson did really well.  They moved him to a neuro chair and he sat upright for 2 hours.  He was sleeping for 1 of those 2 hours, but at least he got out of bed and he tolerated it well. 
  
• Fatigue - I'm sure it's so many factors causing him to be so tired all the time... but radiation causes fatigue and lowers blood counts... steroids also lowers his white blood cells... he's on so many medications now... so yeah.  Just be in prayer that he will adjust well and be blessed with more energy soon. 
  
• Infection - the docs haven't really found the cause of his fevers but they've put him on oral and IV antibiotics to cover him.  They did find a little yeast in his urine which they told us is pretty normal for someone with a foley, so they gave him something for that.  Pray that he doesn't have any infections or develop any new ones.
• Electrolytes - his sodium is still low.  His potassium is normal but on the higher end.  Still on a fluid restriction. 
  
• Appetite - still decent, but not as good as before. We're both a little sick of the hospital food, which is decent, but... we need some variety sometimes.  
• MRI - so I need to correct my last update about his latest spinal MRI - they said today that the lesion in his upper back appears unchanged, but that the two lesions in his saccral area appear bigger.  They said that sometimes it happens that with radiation, it gets bigger before it gets smaller, which is what we're hoping for. 
  
• The Treatment Plan - so after radiation's done, the neurooncologist would like to start him on avastin w/acutane or tarceva.  He still has to consult with neurosurgery about the risks of starting avastin (which messes with blood vessel formation and clotting) so soon after his spine surgery.  If the neurosurgeons say that he's OK, then he'll start right away.  If not, then we'll have to wait and then start.  In the meantime, we need to figure out where we're gonna go next... whether it be the rehab floor or another rehab facility.  That's the big prayer request this time. 
  
• Glasses -  his glasses never turned up.  We're working with the opthamology dept and patient advocacy to have the hospital replace them for us... but it's been a pretty difficult process.  I was able to make him a new patch which he's using on his backup pair of glasses.  We have new frames for him, but the opthamology people need to come and do some measurements or something so they can send it to the optometrist and put the prescription in the glasses.  Seems so simple.  Wish I could do it myself. 
  

K... I think that's all for now.  No thoughts to share today.  :)  Just some pictures.

Pictures:  us at the happiest place on earth for our 6 month dating anniversary (November 2003), us at the bowling tournament during college (we weren't in AMSA, but we were their ringers for that event... it was our first time playing no taps), and us at Pier something or... somewhere in SF in 2004.  We had Ghiradelli that day. 

<3,
Tiff

[Tiffany Chen]

Hokay... wowzers.  Quite a day for us.

So, more updates.  More challenges.

• Radiation is done today!  He had his last treatment and attached are pictures of him ringing the bell that signifies treatment is over!
• Rehab - no go for rehab.  Both places previously recommended to us would not accept us.  Next plan... skilled nursing facility
• SNF (skilled nursing facility) - please pray that a place will open up for us that will both meet our needs and facilitate our treatment options at MD Anderson.  We know that wherever God opens the doors, it'll be the best place for us.  Insurance gave us until tomorrow around noon to find a place... long long story but we need to find some place ASAP.
  

K... we're gonna try to go outside in the neuro chair... keep y'all updated. 

<3,
Tiff

[Tiffany Chen]

Hokay... wowzers.  Quite a day for us.

So, more updates.  More challenges.

• Radiation is done today!  He had his last treatment and attached are pictures of him ringing the bell that signifies treatment is over!
• Rehab - no go for rehab.  Both places previously recommended to us would not accept us.  Next plan... skilled nursing facility
• SNF (skilled nursing facility) - please pray that a place will open up for us that will both meet our needs and facilitate our treatment options at MD Anderson.  We know that wherever God opens the doors, it'll be the best place for us.  Insurance gave us until tomorrow around noon to find a place... long long story but we need to find some place ASAP.

• We also went outside the hospital today.  :)  The nurse was kind enough to take us out.  Picture attached.
  
• Also his BP right now is in the 80's... pray that it goes up. 
  

K.... keep y'all updated. 

<3,
Tiff