A Rollercoaster Ride

Sorry, it's been a while.  I meant to do a post earlier but things have been busy, busy, busy...

First, the good news....Buddy was discharged from the hospital last Friday....literally just in time for us to take him home... 

...because we had to go to the airport to pick up the kids...

...and have a wonderful family reunion that only last week we never even thought we would have!

We had an impromptu dinner party complete with fortune cookies (requested by the girls) and thought these were very apt...

Bud's said: "Accept what you cannot change, and you will feel better."

Mike's said: "Others admire your caring qualities."

Most of Saturday was uneventful -- Bud was able to come down twice to join us for meals and hang out when John came over.

But just as we were about to go to bed, around 10PM, Bud comes from the bathroom to report some bleeding. He was feeling fine but I asked him to text Ruffy to be sure. Not wanting a repeat of last week, Ruffy insisted on a midnight trip to the ER to make sure everything was ok. We waited for the labs to come back (all within normal for Bud) and were back home around 2AM on Sunday. Whew!

Bud was starting to feel really down about having to check-in the hospital again, after only one night at home, so we were glad that we didn't have to do that.  We had to wake up early though, because we had an 8:30AM chemo appt.  The rest of Sunday went perfectly and it was great to be able to go to Mass as a family again.

Today is Monday, Apr. 29.  It is hard to believe that we have only been here in the US for 3 weeks.  We have medical appts scheduled everyday this week ...dialysis, Mayo, chemo...but we can do this...because God has provided for everything for us to do so.

When I think about all that has happened so far, and imagine this happening to almost anybody else I know, I don't need to ask "Why us?"...because who else would have the perfect combination of resources and support that we have, to weather this through?  

How awesome is it that...

• Bud's parents live in MN, close enough to the Mayo Clinic?
• Bud has a cousin, Ruffy, who is a doctor living in MN?
• I have 4 unmarried siblings and my mom available to care for my kids when we left?
• My sister is a doctor in Manila?
• My sister had exactly this week free to take the kids here?
• The kids are US citizens so visas were not an issue to get them here asap?
• We have the resources to get the kids here?
• Bud has the best big brother ever, who flew straight from Paris to MN the moment he heard that Bud was in the ICU and has been such a big help in every way possible?
• Bud's best friends are nearby, ready to cheer him up...and the kids too?
• So many, many people are praying for us right now (I see the blog stats and am amazed at how many views it has gotten)?

I am sure there are so many more that I have forgotten to list, and I am thankful for those too.  Right now, we are learning to take things one day at a time, one step at a time...hoping that the rollercoaster ride ends and it will be smooth-going soon...

Ria

The Long Road Ahead

So the good news is that Buddy is out of the ICU and has been moved to a private room with a 1:2 nurse:patient ratio in the Cardiology unit.  He's still hooked up to the monitor as we still need to make sure his heart rate and blood pressure remain stable before we can be discharged.

However, his kidney functions have not come back after 3 days of dialysis and plasmapheresis...this means that he will have to be on dialysis for an undetermined period...possibly for life, or even after the cancer goes into remission.  There is some residual kidney function and that is better than none, and the doctors say there are cases where they have been surprised and kidneys have returned to normal even after something this traumatic, and they go off dialysis.

So now aside from the rare form of cancer, we also have to look out for the kidneys and the heart as the treatment for one affects the other 2.

I went to Mass this morning and said to God, "Wow, when you test me, you don't hold anything back, huh?  But I know you're with me, so I'm not letting go."  And truly, despite what has happened, I know that God has not left our side.  He continues to send his angels to help us along the way.

Had we not had a doctor's appointment last Monday morning, Buddy would not have been brought to the hospital at just the right time for him to still be alive. And the fact that his cousin Dr. Ruffy Festin is a cardiologist at Methodist Hospital is such a blessing... helping us with the doctors, nurses and even just getting a nice room.

We even had a Code Blue incident last Tuesday where Buddy blacked out for about 10 seconds towards the end of his dialysis, and the whole ICU staff had rushed to his room as his heart rate suddenly spiked over 200, only for it to drop back to the 60s when they all got there without them doing anything.

God was with us also to help bring our kids here. Both of us had unwittingly brought the only keys to the passports with us (I usually leave mine with my mom when I travel, but forgot to in the rush to leave for the US).  But God sent us angels in Tita Telly and Tito Rico who found a way to get them (how they did it will have to remain a secret...).  They even knew someone in Immigration to escort the kids through the airport to the gate when they left this morning.

Even Delta Airlines waived several of their fees after learning of our predicament -- I had just booked tickets for the kids last Saturday for them to come here in May -- from another of our angels, Mars, who is Buddy's loyal secretary.  And made sure that all 4 of them (with my sister) were all seated together in one row, on all legs of the trip.

I think even my Dad (Ato Maningat), who celebrates his 25th death anniversary today (Apr 26 Manila time), had a hand in, as the longest leg (Narita-Portland) was 95% booked, but surprisingly had one row of 4 seats available especially for them. 

And the fact that so many, many people are praying for us now....how can I even think that God, even for a second, has left us?

So yes, the road ahead is long and we don't know where it's going to go...but as Buddy and I agreed this morning ...we had a charmed life...and we still do because we still have each other....and we have all of you who are praying for us and cheering us on...

Here are pics before we left the ICU and of him eating his dinner in his new room.

Ria

PS. People keep asking how we can smile and look like this despite all the stress...the answer is, if we looked bad in them, then they're not going up on the blog:)

A Little Better...

Another quick note...Buddy's vital signs are stable, his kidneys are not yet functioning properly so he is continuing dialysis and plasmapheresis, and is still in the ICU.  Today was relatively calm compared to the panic we were in yesterday, but we need his kidneys to regain their normal function as soon as possible for things to be ok.  They said it was touch and go for a while yesterday.

The theory of what caused his kidneys to fail is tumor lysis -- where the chemo blasted so many of the cancer cells, which went into the blood stream and clogged up the kidneys, which were already in a weakened state to begin with.  So now they need to manage the chemo dosage as to what his kidneys can take.

My sister Trinna will be taking my kids here to us on Friday. Thank you to Tita Telly, Tito Rico and to Mars (Bud's secretary) for making all this possible.

Thank you, thank you, thank you everyone for all the masses, prayers, messages, timeline posts, texts, calls,  etc.  I am sorry if I am not able to respond to you right away or at all.  Just seeing them makes me really emotional, and it's hard enough to keep it all together as it is... but know that they are very much appreciated.

Please keep the prayers coming as we are not yet out of the woods.  Here are a few pics we took today (the bandage on his neck is where the dialysis and plasmapheresis tubes are connected through).

Ria

Prayer Warriors Needed

Just a quick update...Buddy is now in the ICU of Park Nicollet Methodist Hospital due to kidney failure...he has undergone dialysis and now undergoing plasmapheresis to clean out his blood and hopefully get his kidneys back in working condition. He is conscious and his condition has improved from when we brought him in but we are still waiting for his kidneys to work properly again.  This is likely an effect of the chemo and other meds he started to take at the end of last week.

We are also trying to get the kids here as soon as possible.

Your prayers are needed, now more than ever...thanks in advance...

Ria

One in a Million

To my dearest family and my friends, this is Buddy on Friday morning, April 19, 2013.  Ria noted below my diagnosis.  Here is a brief description.

Amyloidosis (am-uh-loi-DO-sis) is a disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ.  Primary Amyloidosis is rare, affecting about 8 in One Million people.  

Multiple myeloma is a cancer of the plasma cells, found in bone marrow, the blood-producing tissue that fills in spaces within bone. In people with multiple myeloma, abnormal plasma cells (myeloma cells) multiply in the bone marrow, the factory of the blood. The result is fewer healthy blood cells (red cells, white cells and platelets). These plasma cells also produce an abnormal protein (a monoclonal, or M, protein) that can cause damage.  

15% of Amyloidosis patients have myeloma.  Do the math and the frequency of this is one in a million people have the combination of these two diseases.  I'm THE one!

Before we made this posting, Ria and I wanted to talk with our kids.  We told Luis and Nadya last night.  I told them that daddy had cancer.  I already told them that I took the first dose of Chemotherapy (yesterday, Thursday) and they gave me a thumbs up and said "Go daddy!".  I talked to Bianca this morning and she asked me, "Do you have cancer daddy?".  I said "Yes, baby, daddy has cancer".  Ria and I agreed from the outset that  we would tell our children everything.  I think they understood the situation and they're taking it well.  Many of you are parents and when your 7 year old says "I really miss you daddy", it's a bit hard not to well up a bit.  

Yesterday was the kickoff, I had the first shot of chemotherapy at 345pm.  No immediate side effects.  I also had my first dose of Prednisone (corticosteroid) as well as a beta blocker for my recent heart problems.  Today I will be going through 10 tablets of an oral chemotherapy, nausea reduction medicine, along with a couple of antibiotics.  The first "series" of chemotherapy will last for 3 months.  My cousin Dr. Ruffy (Festin) has also set me up with a local doctor to help administer the chemo shots so we don't have to go to Rochester every week.  

My spirits are great.  How can they not be with the family and friends we have?  My wonderful wife has now graduated with a Class A wheelchair driving license.  She's the reason that I can't stop smiling every day (whether I have bone cancer or not!).  I also can't say enough about my 83 year old father, who has more physical strength than many people 1/2 his age.  My 77 year old mom can drive better through a Minnesota winter storm than any "Manong Driver" I know.  My brother who takes quick day trips to MN to see me before he heads to Paris.  My wonderful kids and my in-laws who are taking care of them.  I also can't say enough thank yous to my extended family and friends who call, Facetime, Skype, text, comment on the blog and send their prayers.  My love and hugs to all of you for your support.

Cancer is a very serious issue.  We all know that and we've all been touched by it at some point in our lives.  I've found that prayer and faith in our Lord has always been at the forefront in treatment of Cancer.  Yes, I'll have to take all the chemotherapy, corticosteroids, antibiotics, beta-blockers, etc.., but none of that will mean anything without all of your prayers, your love and well wishes.

I've also found that a positive attitude and being able to laugh and enjoy life during this "journey" is important.  To complement the theme of "One in a Million", please click on the video below.  Many of you (like Ria and I) grew up in the 80's generation (you know who you are).  My request is in addition to sending your prayers, that each of you click and watch the video.  Sing the lyrics (you know them!), dance along with the music (ladies of the 80's, please bring back your left-right step from 2:54-3:05!).  You will be reminded of the feathered hair, big collars, and everything that was wonderful about music back then.  Yes, your children will look at you funny.  

I know you are laughing and smiling!  

More to come soon!

Buddy

Confirmed

I know people have been waiting for this, so here it is...Buddy has been officially diagnosed with Myeloma-associated Cardiac and Renal Amyloidosis - in terms of staging, it is myeloma stage 3 ...please give us a moment to take all of that in and we will get back on the blog, answer calls and messages again shortly...thank you for all the love and prayers you continue to send our way...

Ria

Just Chilling

...literally...we are expecting more snow tomorrow in Minnesota...I told Bud that my hands and toes have never really been warm since I arrived here over a week ago...

Yesterday and today were light days and we had a lot of time to just chill and relax and sleep.

Bud was finally able to eat something yesterday, and he actually finished a whole waffle for breakfast. Some HS friends sent flowers and Rinna sent a care basket (yes, more food!).  

This morning, Bud's BFFs John and Steve once again drove over before they went to work (they left their homes at 5:30 am to be here around 7:30 and left around 9am), and were very happy to see Bud in much better shape than last Saturday.

We had nothing scheduled for today so we just attended mass at noon and then spent most of the afternoon napping...forgot to take pics during the day so this is all I have...the 2 of us mugging for the camera...notice I am wearing a hat indoors trying to keep warm in vain!

Ria

Day 4 - Mayo Tuesday April 16

This is Buddy.  This time it's me writing as I actually have strength today to do a post.  Yesterday, I had a Bone Marrow biopsy + needle biopsy of stomach fat (from whatever fat is left) as well as a full body skeletal X-Ray. They put me under a sedative so after waking up, I felt really funky.  I couldn't string any sentences together and if I tried to type anything on a machine, I made about 10 typos per sentence.  I was barely coherent.  So off to sleep for 11 hours.  A bit tough though to watch the news of the Boston Marathon.  If any of you have kids, your heart sinks a bit when you hear tragedies like that. 

Just got back from the Doctor's office this morning (Tuesday, April 16).  Dr. Gertz still needs the bone marrow biopsy results to make the final diagnosis which will be on Thursday, April 18.  He went through a couple of possibilities of what this may be based on the results but said these are not yet final so we'll hold off on making decisions now.  He said we'll get the final diagnosis and the treatment options on Thursday and we can then decide on how to proceed.  

For treatment options, we may need to stay here for the outset simply because I'm not fit to travel.  Dr. Gertz said "You're having shortness of breath just talking to me from a couch...".  Translation: don't get on a plane for 20 hours.

Post the visit, I then got fitted for an ECG harness, which is a 4-point ECG with a device that records my heart rate.  My heart keeps going wacko at times, i.e., it starts skipping a beat, then accelerates to 130-150bpm for no reason, then goes back to normal.  Believe it or not, one of the most difficult things to do is getting ready in the morning as my heart rate rockets to 130bpm just by getting up, brushing my teeth, showering and then getting dressed.  By the time I sit into the wheelchair, I feel like I've run a 5K race. The harness has 4 patches stuck to locations around my heart.  Luckily, I'm not hairy so taking the patches off should be no problem!

As we're now getting to the point where we'll finally find out what this is, I wanted to thank all of you for your thoughts, prayers, well wishes, visits, phone calls, everything.  I'm so touched by all of my family, friends, acquaintances who have reached out.  I appreciate every one of your messages and prayers.  Thank you all, from the bottom of our hearts.  

I especially need to thank the author of this blog, my wonderful wife Ria, who I love more than anything.  Without her, I wouldn't be able to get through a minute of this.  

By Thursday, our Journey will finally have a roadmap.  We'll share the roadmap with all of you soonest.  In the meantime, please accept our love to all of you!!  Stay tuned - Buddy 4/16/13  

One More Day

Tomorrow we will most likely know the underlying cause of Buddy's illness, based on the bone marrow biopsy performed this afternoon. Finally. This is what we came here for.

We arrived only one week ago today, but feel that we have been here longer, after the 3 days we have spent at Mayo (5 including the weekend).  Much has been accomplished, but so much more needs to be done. 

Had we postponed our trip another week, there is no way Buddy would have made it here.  Except for inside our hotel room, the only way he gets around now is via wheelchair (I think I will be able to get my wheelchair driving license by the end of the week -- I didn't bump into any other wheelchair patients today!).  

It's not so much that he can't walk, it's that he gets out of breath after walking 50 meters and his hips are hurting.  Sometimes his heart rate suddenly shoots up to 150 beats/minute while he's lying down or sleeping and that wipes him out because it's like he did some heavy-duty cardio exercise without even trying.

Sunday, Apr 14

Yesterday was a relaxing day for us.  It was the first time we had a whole morning alone  together since we arrived (woohoo!) and we just hung out in front of the TV, eating Chinese left-overs.  He was still recovering from the effects of the infusion but  was much better than Saturday.  I tried to make him eat the big hotel breakfast below (which he asked for) but at least he finished the bowl of granola...guess who had to eat the rest?

He was able to speak on the phone with a few cousins: Rinna, Vince and Aldo.  Ruffy & Bernadette and kids drove over in the late afternoon and brought even more supplies (check out our very full fridge), flowers and a cute drawing by Sarah. 

Monday, Apr 15

Today wasn't as busy as the other 2 days here at Mayo but is probably the most significant due to the bone marrow biopsy (BMB).

We started out with a 10am meeting with Dr. Witt who informed us that the Cardio MRI showed "no sign of amyloid involvement", which, on its own, is very good news...but given all the other symptoms, is quite confusing and really needs the BMB to be of more use.  Bud didn't sleep well last night as his heart rate started acting funky again so Dr. Witt decided to do a 24-hr  holster starting tom noon.

After a quick rest in the hotel, we went in for the BMB at 1:15. I was able to go inside and watch as the nurse prepped him but not watch the procedure.  The actual procedure was really fast... faster than the pre and post preps.  He said he didn't even feel a thing and the next thing he knew they were wheeling him back to where I was.  We learned about what happened at the Boston Marathon as Bud was recovering.

Then we went up to the 14th floor for a Skeletal Xray.  We were back at the hotel by 5pm and eating dinner by 6pm -- Chinese delivery again (so Pinoy, we all miss eating rice) -- and in bed by 7:30.

On a side note, my NutriBullet arrived today and we are ready to "shake" things up and start drinking green -- in the photo we have a spinach, banana, pineapple and strawberry smoothie.  Need to get me some superfoods when we get back to Plymouth :)

Ria

A Sampling of What's to Come

So apparently, the Pamidronate infusion Bud had last Friday was not a simple medicine to relieve him of his joint pains, it is also a form of chemotherapy treatment...and all that post-chemo drama you see on TV and the movies...they're all true.

So yesterday was one of the worst days of his life ever, and it was hard to see him in so much pain...and knowing that there will be more to come.  At some point I just made him promise not give up...ever.

But he had a few good "breaks" during the day.  His best friend John drove over in the morning and brought Steve as a surprise. 

Mike also flew in and helped move us into our new lodgings at Residence Inn.  It's so nice to now have a kitchen, a couch and a dining table.  Mike even did the groceries and we're all set up for the week.   My sister-in-law Lisa even sent a really cool care basket complete with flowers and a vase!  Thanks so much guys!

We had Chinese food delivered for dinner, enough so we're covered for the next day.  Bud was even able to keep a few spoonfuls of orange chicken and rice down for dinner.  We just need to get the knack of these post-chemo effects and it will all be good...

Ria

Mayo: Day 2

Yesterday was a long, tiring but very fruitful day.  We are getting closer to finding out what this is...(deep breath........) it doesn't look very pretty, but we will find out for sure on Tuesday after the Bone Marrow biopsy on Monday.

We started out at 7:45 to have a quick breakfast at the Mayo Cafeteria before we met with Dr. Morie A. Gertz (Chair, Internal Medicine Mayo Clinic; Hematology & Oncology Specialist).  The meeting with Dr. Gertz went very well and he said the Bone Marrow biopsy will positively identify what it is that we're dealing with and then we can look forward to treatment very soon. He asked us to stay on in Rochester until Friday next week, to be sure and included more blood tests (so Bud wasn't allowed to eat until those were done)  and an Infusion to help ease Bud's joint pains.

After meeting with Dr. Gertz, we went to St. Mary's as our Cardio MRI was moved up.  We finished there around 2pm and went back to Mayo for the blood tests.  We then crossed the street (but used the underground walkways which was 5x longer because it started to snow) to Jimmy John's for a late lunch.  By then it was 3:30pm and the Infusion wasn't until 5:30 so we decided to head back to the hotel for a quick nap before that.

We showed up at Desk 8G of the Eisenberg Bldg a little past 5:30 and learned that the infusion would take about 2+ hours. Good thing we were allowed to accompany Bud in the room as it was done -- Mom and Dad went back to Jimmy John's for a quick dinner during that time. We got back to the hotel around 9pm, all of us exhausted from the long day.

As I write this, Bud is feeling the after-effects of the infusion and has had a restless night, feeling very nauseated. But he says that his hips and joints don't seem to hurt as much...

Mom and Dad are checking out today and heading home to Plymouth for the weekend while Bud and I transfer to Residence Inn by Marriott until Friday next week.  Mom and Dad will return on Monday morning to accompany us for the next round of tests.

Bud's best friend from grade school, John, is driving down from Minneapolis to have breakfast with him this morning. Then Mike is flying in from Chicago by noon to spend the rest of the day with us before he leaves again tomorrow.

Next week, on Monday morning we are scheduled to meet with Dr. Witt for the cardio results and then do the Bone Marrow biopsy in the afternoon. Tuesday morning we will meet with Dr. Gertz hopefully with the results of the biopsy.

Bud is getting weaker every day and tries very hard not to show it when his parents are around.  Add to that the fact that we still haven't gotten over our jetlag -- we're both still waking up at 1am, so really by 3pm he just wants to crawl into bed already.  He eats dinner just to humor us, but he barely tastes the food as whatever he has has affected his taste buds and everything tastes like cardboard.  I'm so glad we left while he could still make the long trip.

That's it for now, we will try to get as much rest as we can this week-end as we prepare for another grueling week of tests and hopefully get some treatment started. 

Ria

Mayo: Day 1

Today was a long day at Mayo Clinic.  We had to register by 7:30 am so we left the hotel at 6:50. Then we had time for a quick breakfast in the cafeteria before our 8:15 appointment with the doctors.

We met with Dr. Chance Witt, a cardiology resident who took Bud's history and did his check-up and found that on top of everything else, he now has a heart murmur, which wasn't there 2 weeks ago when we did the 2D echo in Medical City.

He then called in his boss Dr. Wayne Miller who confirmed his findings -- which was consistent with how Bud has been feeling lately as he is very aware when his heart is beating irregularly.

Bud was then subjected to a slew of lab tests (6 big vials of blood), an ECG and 2D echo. What was amazing was that within 5 min of the 2d echo being done, we went back to Dr. Witt and all the lab, ECG and Echocardiogram results were already with him. Those would have easily taken 3-5 days in Medical City.

Tomorrow, we are scheduled to meet with a Hematologist at 9:00am and for a Cardio MRI at 3:30pm.  Whatever he has looks like it is moving fast and new symptoms are cropping up that weren't there previously.  

What is obvious is that this is a very complicated case and several departments need to be involved, as there are too many symptoms that still don't add up.  But seeing what we have today, we are confident that we are in the right place.

God continues to show us that He is here with us on our journey... the whole day today, Dr. Witt had been trying to schedule us with Hematology ASAP, as the MRI readings were confirmed by their Radiology Dept, to no avail. But at 5pm, as we were napping back at the hotel, he finally called us to say that a patient cancelled an appt tomorrow, which is why we were able to get a 9am appointment. Amazing, right?

Even the fact that his irregular heartbeat presented itself most of the day, from the time we met the doctors at 8:15 until the end of the 2D Echo at 2:30, is a blessing because, although this started 2 weeks ago, it doesn't happen everyday, and usually doesn't last for long.  Just the other day, Bud's cardiologist cousin Dr. Ruffy Festin visited us and checked his heartbeat, and everything was normal. And by the time we got back to the hotel today at 4pm, Bud's heartbeat was back to normal.  It's as if God made sure that the doctors saw it today.

And was it fate or chance that no senior General Practioner was on duty yesterday, so they sent us to Cardiology instead for our 1st meeting?

On a side note, Randy, the hotel limo driver / bellman recommended what he thinks is the best pizza in Rochester and we have to agree...Mr. Pizza is soooooo good!!!

Ria

Waiting for Tomorrow

We are finally in Rochester, staying at the Double-Tree by Hilton (thanks Mike!).  It was a good thing Mike suggested for us to drive down ahead because as we were packing (and Buddy napped), I read the letter they sent Buddy and learned that the initial tests may take 5-8 days. So instead of packing for 2 nights, we ended up taking all our clothes with us to Rochester, in case we do have to stay here until next week.

There's supposed to be a snowstorm tonight, too so we're glad to have avoided that already and the Mayo Clinic is only a shuttle ride away.  This morning, I woke up to everything blanketed with fine snow.  Good thing Mom and I finished our errands yesterday and I got to wear my brand new boots today:)

We've been trying to fatten Buddy up, getting him whatever he wants to eat while he's here...and even giving in to jetlag snacking...

Here we are ready to leave for Rochester...(need to remind Bud to get a better shot of my new boots!)...

And here's our room at the Double Tree...since Bud is fasting for tomorrow's tests, we agreed not to eat our free welcome cookies until he's allowed to eat:)

Wish us luck tomorrow!!!!

Ria

We're Going to Mayo!

We finally got an appointment at Mayo Clinic for tomorrow at 7:30 AM.  Since we're expecting a snowstorm tonight, Mike has offered for us to use his Marriott points so we can drive up there today before the storm hits. So we're just packing up and getting ready to go in a bit.

In the meantime, we've been trying to fatten Buddy up, without getting fat ourselves...not sure if this is working though, for us, I mean as we end up eating more than he does:))

Ria

We have arrived in MN!

After a 17-hour trip, we are finally here in MN!

We checked the status of the DHL package we sent to the Mayo Clinic last week and found that they had received it this morning. So Buddy called his contact, Bridget, and she said that she is currently inputting the data, and the doctors who reviewed his records are suggesting that he see a General Practitioner, as opposed to our request to see a Hematologist, as he has more symptoms that also need to be addressed.

We are now just waiting for the email confirmation of our 1st appointment, hopefully sooner than later this week.

Ria

The Night Before

Since we were leaving the next day, I asked my sister Trinna to sleep over at our place so Bianca wouldn't be alone at home when we left as Nadya and Luis are still at camp.  We also had the rest of my family and the Luceros gather for our regular Sunday meal, although we switched lunch for dinner.

Bud had to go up and rest by around 7:30 as he was already very tired and his heart rate was acting funky...it would slow down when he was sitting down but woukd go back to normal after moving around...so weird...but since we had no more time to see a doctor, we'll have to wait til we get to MN where Bud's cousin Dr. Ruffy Festin is a Cardiologist.

My family left around 9pm after we prayed the Rosary and that's the only time I really started to pack for the trip.  Since the forecast for MN is about 5-10C, I had to bring out my winter clothes and try almost everything on before deciding what to bring since it's not quite spring. Bud, on the other hand, just brought out all the clothes he wanted to bring and left them on top of the luggage, for me to fold and pack:) This is only the 2nd time I have ever packed for him, the 1st time being 2 weeks ago when we went to Bali. I told him to take advantage of my packing services while he's unwell;)

I finished packing around 1:30am and went to sleep, I set my ipad alarm clock to 3:45 but forgot that it was on silent mode so I didnt wake up until Bud's alarm at 4:30 went off. We finally left the house at 5:50 with Bianca and Trinna taking us to the airport and Mang Joe, our temp driver while we're gone.

Side story: My search for a driver for the kids while we're gone is another proof of God being with us all the way. The moment we decided to go to the US, we started asking around for driver referrals. Finally, on Tuesday, Tita Telly called me (and only last Sat did I learn how much effort that call took for her since she herself has been feeling ill the past few weeks that talking alone is a major effort) that ine if her good friends had a reco that seemed perfect for us. She had even talked to him prior to calling me. He used to drive for a family for 27 years but was retired because he had gotten old. Now he takes on driving jobs when people need his services, or sells foodstuffs. 

So I called him to try him out on Wed. As he was driving us to Bud's office (I had taken to accompanying Bud to work in the last week since he tires very easily now), I asked him who he used to drive for - and of all coincidences, the family that he used to drive for was our next door neighbor in Greenhills - as in, we shared a wall and played with them as kids! He also seemed really trustworthy and drove pretty well, although admits that he has difficulty at night cos of the glare of oncoming traffic, but for the needs of the kids, he is perfect!

So when people ask me how I am, I say that I am ok...because I know that God is with us in all this...just look, timing-wise, it happened right as summer vacation started so we can go without worrying about the kids in school; financially, and I'm sure many people are wondering, we are more than adequately covered by Global Sources' international health insurance.  Even for our trip to the US, normally by Jan we would have already booked our big vacation trip in May to be charged to Bud's home leave, but this year, he was just so busy that he couldn't figure out some dates to go, so now we are using those credits for our trip. 

Other little things too like, we're booked in Misibis Bay for May2-4 with a DealGrocer voucher, and I remembered that a friend of mine knows the owner, so they agreed to hold our reservation until we get back.

But, more importantly, we always remind ourselves of how blessed we have been all our lives...really blessed to have had everything come to us so easily -- we have the perfect family, perfect kids, perfect life - and this is our first real test that we have ever faced...

Ria

Mojica Send-Off

The weekend before we left was busy as relatives wanted to see Buddy - most of them only learned about all this a few days ago (then again, didn't we all?) -- and they wanted to wish us well.

Sunday lunch was set aside for the Mojicas at Tita Letty's house (Bud's former home before they moved to the US in '74). It was great to see everybody in one place! 

We started with a mass officiated by Fr. Arevalo who also blessed and annointed Bud. Once again, Bud's parents joined the Mass via Skype.  Fr. Arevalo was great -- what I remember him saying is that we were all there because we believed that God would save Buddy, so if anyone in the room had any doubt that God would help us, then he or she just better leave the room because they were just ruining the collective power of the faith.

We learned from the Mojicas that Buddy's dad had been crying when people called him up to greet him Happy Birthday last March 31.  You see, the day we got the MRI results, Easter Sunday, was actually Dad Mando's birthday. So when we called him to tell him the results, we had to apologize for the bad news we were bringing on his birthday.

But it was a great day to see everyone, if only it were for a happier occasion. Bud was touched that even relatives from Batangas drove to Manila just for this. It is heart-warming to see just how many people actually love him:)

Ria

The Unexpected Start to the Journey

In Q4, 2012, life (healthwise) was great.  I was running 6-7x a week.  Weight was, well, on the heavy side (~190lbs) but I didn't worry about it too much as I was always exercising.  I felt I could do anything, run 3-5Km, walk through multiple airports in a day (which more often than not happened).  At the time, I was traveling about 3/4 of the time.  To HKG, China, Korea, India, Indonesia, Brazil, USA... 90,000 frequent flyer miles in 6 months.  Near the end of the year, I started feeling tired.  I dismissed it as due to the travel schedule and since I would be taking time off during the Xmas holidays, it would give me time to recharge.

On Dec. 23, morning, I twisted my back showing off to my son Luis playing basketball.  Case of pure stupidity as I obviously don't have the "moves" now that I did when I was 18.  I've thrown out my back before so I figured this would just take a couple of weeks and then I would be fine.

The back pain went away in January after a couple of weeks but I noticed that my hips were screwed up.  I didn't have any range of motion in my hips at all and I couldn't run anymore.  My usual 20 min. jog going 3K went to 20 min. jog barely reaching 1.5K.  At the end of the 20 mins, I couldn't breathe.  I went to a Chiro and he did some adjustments.  My back felt much better but my hips were still out.  Also, on an everyday basis, by 7pm, I was totally exhausted.  Something was wrong. Also, I had no appetite and was losing weight fast.  10 lbs after 3 weeks and 20 lbs after 2 months.  I'm now down to my high school weight, 170 lbs. 

I was still traveling, to HKG 2x and to Frankfurt Germany.  In Germany,  I had to walk around a # of large trade show venues.  I was able to walk a few hundred meters at a time and then I would need to sit and stretch or rest.  When I came back from Germany, I was totally spent.  Then, I had some internal bleeding issues.  My doctor (Dr. Ramy Roxas, cousin of Vinchy, Rissa, Rinna, Ria) said it may be a repeat of hemorrhoids that I had 4 years ago.  When he did the medical procedure, he said he found Petechiae (small ulcertative lesions) along the intestinal lining and suspected that I may have a bacterial infection.  After 1 week of very nasty antibiotics, the infection didn't go away.  He said I may have something systemic.  This was March 13.

For the past 3 weeks, we visited Medical City, St. Luke's, Cardinal Santos to have every possible test done.  Blood tests (30+!) CT Scans (with contrast), Ultrasounds, X-Rays, 2D Echocardiograms (with Bubble Contrast!).  My endocrinologist (my sister-law-law, Dra. Trinna Maningat), helped set up visits to a Pulmonologist (Dr. Kim Silos, also cousin of Vinchy, Rissa, Rinna and Ria) and Dra. Eternity Labio (Gastroenterologist).  Every report showed that I was within normal standards except for four items.  One of my creatinine tests showed muscle degradation and another showed I was anemic (low red blood cell count).  3rd, Dr. Dan Alonzo (ENT) found that I had Petechiae in the back of my mouth and throat.  The 4th anomaly showed I had a mild deformity in my L1 vertebrae.  We went to a Spinal Surgeon, Dr. Ryan Carnero (dad of Bianca's classmate) and he said he was worried about my lack of range of motion in my hips.  The CT scan only showed something in the vertebrae but it didn't show anything wrong with my hips.  He then requested an MRI.

I hated every minute of the MRI.  2 hrs of sitting in a torpedo like tube with loud knocking and vibrations.  My back cramped up after 30 mins but I wasn't supposed to move otherwise the imagery would get screwed up.  I was complaining that all the MRI was going to show was that I had this spinal problem and that I would need physical therapy.

We picked up the MRI results on Easter Sunday, March 31, my dad's birthday.  We had just spent a wonderful couple of days in Bali with Ria's family.  Ria picked up the results and read the MRI results for the spine.  It had the usual explanation about my L1 vertebrae problems but then Ria read the last line.  At the end, it noted "possible multiple myeloma, lymphoma, leukemia, metastasis" in the lower spinal area.  The same sentence was repeated in the MRI results for my hips.  I asked Ria "could you please read that again??"  We immediately scanned the results and sent it to Trinna.  She immediately Face Timed us with a worried look.  She said that this possibility matched all my symptoms.  In an instant, we realized that I may have a form of bone cancer.  I Skyped my parents later and when I read the results to my dad, I could see his jaw drop.  He read the results again after mom printed them and I saw the look on his face.  Can't forget the look on my dad's face.  He's seen thousands of preliminary diagnoses before but I guess he hadn't read one that said his son may have bone cancer.  We agreed then that we need to go to the Mayo Clinic in Rochester MN to further pursue this as they are the best in the world at this. 

Bone Marrow Cancer or Bone Cancer isn't fully confirmed yet as we still need to do a bone marrow biopsy and bone scan.  We met with a top Hematologist, Dra. Norma Ona and she said if this is done in Manila, the results may take a week or so to get the results back.  Also, she said that if we go to Mayo Clinic, they have the best doctors and the best advancements in technology to handle it.

We booked tickets for April 8, 2013 to head to Mpls.  Luckily, my parents live an hour north of Rochester MN so it will be easy to get to.

In the past week, I have received countless emails, phone calls, Skype calls, Facebook posts of support with offers of prayers, help, thoughts, everything.  Thank you to all of you for your prayers and your help.  I'm so thankful for the outpouring of love from all of you.

The journey has now started.  Whatever this is, bone cancer or whatever, it has picked a fight with the wrong person.  I am getting psyched up to royally kick it's a___.  I have the greatest family and support team behind me.  Stay tuned as Ria and I move on with this journey. 

Off to Camp!

Yesterday, we sent Nadya and Luis off to camp for the 2nd time. Although the camp is only for 5 days, since we're leaving before they get back, it will be at least a month before we see them again.

We could have been selfish and not let them push thru with the camp, but they had been looking forward to this since they got back from the last camp in October.  Warning: some of the pics may be tough to see...:((

Ria

Our Sanchez-Estrella Family

Aside from the fact that I married one of the nicest and handsomest guys ever, who is so obviously still crazy over me (14 years later)...one of the biggest reasons I am so thankful to God for marrying Buddy is for making me part of his Sanchez-Estrella family.

This is a big, close-knit family full of loud people who love to eat and laugh and welcome anybody into their homes with open arms.  Everytime there is an Estrella gathering, we practically drop whatever else it is we're doing to make sure that we're there.

So today, we invited them over to our home for a mass and dinner afterwards.  Although some of them were not with us physically, we know they were with us in spirit and in prayer.  

As Buddy said earlier, whatever it is that he has, with all his family supporting him, it chose the wrong person to pick on and we're ready to royally kick some a**!!!

Buddy saying grace before the meal...too bad we weren't able to take pics during the mass...Bianca did the 1st Reading, I did the Resp Psalm and Bud did the 2nd Reading.

We were supposed to have a simple dinner of bacon cheeseburgers  but Tita Myrna and Tito Willie Sanchez brought steak, fettuccine, apple pie and mango float; while Ginger and Gil dela Fuente brought yummy food from Hap Chan - Fish Lip soup, assorted dimsum, crispy noodles with seafood, sweet & sour pork, beef broccoli and yang chow fried rice. Tita Telly & Tito Rico Agcaoili brought some Chicken Galantina from Barbara's and Tita Sylvia Caniza brought her famous apple pie and fruit cake. Gab Agcaoili also brought special pansit Malabon from Amber's! And who brought the raisin bread???  At least some of my Apple-Cinnamon Bread Pudding got eaten, as well...

Our awesome family!

More of the young ones...Gab, thanks for the surprise visit and the Talino At Ejemplo (TAE) performance that brought the house down!

Thanks to Tito Rico Agcaoili for bringing our priest for the day!

Ria

It's Time To Go

We arrived from Bali last Saturday, March 30 - since the Ambulatory Services of Medical City were still closed, we had to wait til Sunday to pick-up the MRI and Auto-Immune test results.

On Easter Sunday, we went to the 10am mass in Valle 5 since Nadya didn't have choir (Vox Angeli sang at the Easter Vigil the night before), then went straight to MedCity for the results. Luis and I went down to get them as Bud and the girls circled around in the car. I read the MRI results aloud to Bud in the car...they didn't sound good.

Diffuse marrow signal abnormalities in the pelvic bones and bilateral proximal femurs... Correlation with clinical findings and other dignostic modalities (e.g. bone scan) is advised.

As soon as we got home, I scanned the results and sent them to Trinna, she called (actually Face Timed, is this a verb now?) within 10 min looking very serious.  That's when I knew it was time to go to the US.

On Monday, we were seen by Dra. Norma Ona, Hematologist (what a beautiful person she was) and she echoed what my sister said - go to the US as soon as possible - if we weren't already planning to go,  she was ready to do a bone biopsy the next day.  Trinna has been such a blessing these past few weeks, her PGH connections are really working for us - Dra. Ona's son is married to one of Trinna's very good friends and they used to study in their house in their PGH days.

I went with Bud to the office that afternoon to book our plane tickets -- we had wanted to leave on Apr 10 so we can pickup Nadya and Luis from camp on Apr 9 but the flights were already booked - so Apr 8, it is.  I also convinced Bud to upgrade to Business Class, the short 4-hr trip to Bali was already hard for him - and this is a 17-hr trip!

Earlier on Monday morning, Bianca came to me in our room and asked me "Does Daddy have cancer?" OMG! That was so hard to answer, but if there's one rule we follow in our home, it's to never lie to our kids -- so I had to tell her "Maybe, but we're not sure."  That has been one of the hardest things for me to deal with so far.

Later that evening, before dinner, we sat all 3 kids down and told them what's happening...that Daddy might have cancer and we're going to the US to get the best treatment we can find to make sure he gets better and we can go home as soon as possible.  Nadya was the 1st to break down and later on all 5 of us were crying.

Luckily, Rissa and Bong Murga arrived soon enough for dinner, with Bella (Miguel followed later) so we had to cut our crying session short, as they wanted to wish Buddy well before we left.

But other than that, the kids seem to be handling it well, or it hasn't sunk in yet.  They're going to be kept pretty busy in the next few weeks anyway, as we're trying to keep their lives as normal as possible, except without Mommy around, as they're used to Buddy being gone for work, anyway.

Yaya Jen told me that the other day Bianca asked her who was going to take care of her while Mommy and Daddy were gone?....my poor baby...there's Lola Julie and lots of titas and titos plus Yaya Jen, of course!

Ria

Today begins...

Bud was Skyping with Mike this morning and Mike suggested putting up a blog to make keeping everyone posted on what's happening easier. For me, it's more of journaling what is happening and what I'm thinking and feeling, so I don't forget...so forgive me if I will ramble at some point....or whatever...or what I post seems unimportant to you...at the time I posted it, it was important to me...

Ria