Pictures from Cancer Battlefield, Part 16: Dad's 54th Birthday or Every Holiday but One

Wednesday, we celebrated dad's 54th birthday.  This means our family celebrated EVERY holiday that a year has to offer here at the CTCA except one: our 4th anniversary on October 18th.

Everything from Thanksgiving to Christmas to New Years to Valentine's Day and St. Patrick's Day and Easter...they were all spent here this past year.  All the birthdays too - from Whitney's in November to dad's here just Wednesday...  It reminds me of the song from the musical "Rent" when they ask how you measure your life...in this case, I suppose we could measure in holidays and birthday celebrations...and the fact that we even got to celebrate mom's in February was a miracle to be marked in and of itself.  God has been so good to us.

I am not complaining; I'm really not.  I know that this journey here in Zion has changed my entire family for the better.  We are so much stronger and more grounded in God's word than ever before.  And what could possibly shake us now?  Nothing.  We know how to let God be in control (as He always was) and let go of our own naive ideas of "want" and "need".

"Consider it pure joy, my brothers, when you face trials of many kinds; because you know that the testing of your faith develops perseverance. Perseverance must finish its work; so that you may be mature and complete, not lacking anything." - James 1:2-4 (NIV) 

We've been saying for a long while now how God only allows trials and tribulations for one of two reasons: to correct or to perfect.  I know this to be true.  We were corrected along this journey many times, but more importantly, we were perfected; so that when the time comes, we will be ready, willing, and able to stand up and shout His glory to the world.

Oh, and I almost forgot...........Mom WALKED yesterday!  Yep, she WALKED, folks!  This is a HUGE step in her healing process.  Once she can walk unassisted, she will be allowed to go out-patient; and beyond that, her numbers are so good, she will probably go home (that's right, actually back home to Iowa) soon after that!

So many miracles...how blessed can one family be?

Here are some pictures from the past couple of weeks:

Mom and one of our favorite members of the housekeeping staff, Connie.  She brought mom that little jewelry box back from Mexico a week ago when she went to visit her family.  SO NICE!

Mom and her nurse, Raul.  He was her first night nurse ever, and he always calls mom "his baby".  He's so sweet!

Dad opening cards.

Dad ready to dive into his cake from his employees back home in Iowa.

Big bunch of balloons (alliteration city!) from all of us.

Dad and his Bob the Builder cake from the family.  Chocolate with raspberry filling - YUM!

Love and Blessings to you all...hopefully next time I post I'll have pictures of mom walking, maybe even a video!

*mandie*

No News is Not Always Good News

It's Friday afternoon; which means there's really no way we're going to receive our referral call this week at all.  To say we're disappointed would be an understatement; yet, we know we should count ourselves lucky that Holt is even ready to be making matches for February HSTK (home studies to Korea).  So, we are *trying* to "keep calm and carry on".

Today on one of the Holt online forums, I saw a picture of a baby boy who had just been matched with his family on August 2nd.  He was adorable and chubby and had a big tuft of black, wispy hair sticking nearly straight up on top of his head - SO CUTE!  I realized that he is probably close to the same age and size as our wee one will be when we get our call - that really hit home!

As much as I want to see our child's face NOW, I know that God has a perfect plan and always has.  So, I try try TRY to be patient every day and not look at my phone a million times or check the online forums every quarter hour to somehow, someway discover something I didn't know 15 minutes prior.  It is really difficult, but I try to remind myself that waiting for referral will probably be a thousand times easier than waiting for the EP (emigration permit) or TC (travel call). 

..................................................................................................................................................................


Two days ago, I was heading up to mom's hospital room when I ran into Pil (pronounced Pia) who is the Korean wife of Thomas (a fellow cancer fighter who will be receiving his stem cell transplant on the same floor as mom in about a week).  She had made a bunch of food, but we were late in the game and missed out on getting to try some of it.

BUT, she did take a picture with me and agree to chat more about Korean culture and food when Thomas comes back for his transplant.  She also shared directions on how to get to one of her favorite Korean markets; which happens to be quite close to Zion in the town of Gurnee.  Mr. C and I have wanted to go there for a while now, but it's hard to coordinate a time since we are either here at the apartment caring for my sister or at the hospital caring for mom.  But we are hoping someday soon we'll be able to go check it out.

Pil and I in the CTCA stem cell unit.  Please forgive my face - I had not one drop of makeup on, and I look scary!

We are saying our prayers and crossing all our fingers and toes that this next week will bring some news of Baby C!  In the meantime, God grant me patience! ;-)

Love and Blessings,
*mandie*

Foodstuffs: Bibimbap and Gluten-Free Living

No word today on the adoption front. *insert sad face here*  This is supposedly "our week".  It has been taking nearly 7 months from HSTK (home study to Korea) to receive a referral in Holt's standard program.  Our HSTK was Valentine's Day; so tomorrow is our 7-month mark.  I am hoping against hope that we get a phone call tomorrow, but I'm also trying to remain calm and patient in case we don't hear anything tomorrow or even this week.

I know God has a plan for Baby C, and I want it to be perfect; so, if I have to wait a little bit longer to know who s/he is, that's fine.  I just want everything to be exactly as it should be in God's perfect plan.

In the meantime, Mr. C and I have been delving into South Korean culture as much as possible.  We listen to a K-Pop station on our car's satellite radio that has been full of amazing information on not only pop music in Korea, but also current culture and trends in our child's home country (everything from clothing trends to what Koreans like to eat during the summertime and thoughts on the 2012 summer Olympics in London).  It has been so fun, and many of the DJ's late at night do their shows entirely in English; which is obviously incredibly helpful.

To top things off, last week I met an amazing couple here at the CTCA.  The husband, who will receive a stem cell transplant soon, is a war veteran and former Green Beret who is married to a South Korean immigrant.  She graciously spoke to Mr. C and I for about an hour, and she gave us some great insight into South Korean family life and how children are raised and taught in schools.  She pointed out that there is a Korean market nearby the hospital that has tons of "foodstuffs" and Korean goodies for kids and adults alike.

I found most of it fascinating.  There were a few things that were difficult to understand (like her obsession with weight, which seems to be an ongoing undercurrent in Korean culture - THIN is definitely "in") and her idea that boys are inherently "bad" and "prone to misbehaving" (thus needing more strict rules and regulations in family life and school); but overall, I thought she was full of good advice and really got me excited about getting back into trying to make Korean dishes again.

I had already made bulgogi and attempted to make kimchi months ago.  The bulgogi turned out fabulously; the kimchi?  Not so much.  I adore kimchi, but mine was way too salty (unbearable so).  Ah well, maybe next time, right?

Recently, I bought Baby C this:

A book on one of Korea's most popular dishes.

Bibimbap translates to "mixed meal" or "mixed rice" and is one of Korea's staple dishes.  It's so popular, there is even a kid's song that people sing about making it for dinner. (I tried to find a really good vid of it online, but couldn't find one I liked well enough; so, that might be in this blog's future, haha!)  Mostly, it consists of a bed of rice with all sorts of julienne, stir fried vegetables, topped off with a large dollop of red chili sauce and a raw egg yolk.  In short, it looks DELICIOUS.  I had never even tasted it, and somehow I was craving it!

I was also excited to try this recipe, because I have been going gluten-free lately.  After years upon years of dealing with daily sinus issues, I had had it.  I was over feeling constant sinus pressure and pain and being unable to breathe normally every, single day.  My sister, M, is gluten-free; but her allergy presents itself through digestive issues.  However, after doing a lot of research, I realized that gluten allergies can present themselves through sinus problems just like mine.  Making bibimbap gave me an opportunity to create a dish from my child's birth country AND eat a tasty and nutritious gluten-free meal. 

So, I dove in.  It was a little time consuming to shred all of the veggies just so, because we're still here at the apartment near the CTCA where mom is recovering from her stem cell transplant.  This, of course, means that I don't have any of my nice cooking equipment; but it was alright.  Here's the end result:

This is what it looked like simmering away in the pan.

This is what it looked like "bi bimmed" or "mixed up".  DELISH!

Keeping with my gluten-free trend, I made a couple more recipes lately that turned out really well both of which were from the Gluten Free Goddess blog; which is just fantastic!  I highly recommend you checking it out if you are interested in going gluten-free.

Lemon infused gluten-free pasta salad with fresh herbs and asparagus. (Yes, that is vegan mayo you see; I was careful to check ALL the ingredients.  Gluten can hide in the most unassuming of places!)

Gluten-free cherry crisp.

AND, we found out that one of our favorite pizza places near the apartment makes a gluten-free crust!

Half garlic, half pepperoni gluten-free pizza from Jimano's PIzzeria.

My adventures in the world of gluten-free baking and cooking have only just begun.  Yes, it is a little more difficult - you definitely have to be more diligent and mindful; but it is worth it to feel so much better.  I'm sure I will be blogging about fun and tasty gluten-free recipes with you all in the future.

I'm so incredibly tired right now; I feel as though I'm in a daze.  Thanks for hanging in there with me, because I'm sure this post has been scattered, and I apologize for that.  Between the adoption, my sister having several seizures the past few weeks, and being at the hospital for hours at a time with my mom every day, I sometimes feel as though I'm losing my mind.  But, I know God is giving me strength and keeping us all on the right path toward restoration and a new life of happiness, health, hope, love, and JOY.

Take care, wherever you may be in this world.  Be well, be blessed, be LOVE.

*mandie*

I Can't Make My Phone Ring by Looking at It (a lack of patience story)

Korean hanja for "patience/perseverance".  Photo courtesy of Oriental Outpost.

They shouldn't have said a word; because, honestly, now I'm more obsessed than ever.

It's true.

Last week, Mr. C and I were informed that all of the home studies sent to Korea in January 2012 had been matched; which means we are NEXT in line to receive our referral!  AHHHHHHHH!!!!!

Although our home study was technically done in January, a few more pieces of paper were needed and then it all had to be translated; which meant that HSTK (or "home study to Korea") wasn't sent until Valentine's Day.  Being the sap that I am, though, I'm okay with this; because, really, could the date be any more significant?  Valentine's Day is also a huge holiday in South Korea; so that made it all the more poignant for us.

As exciting as this time is for us, I am learning just how fundamentally flawed my patience factor really is.  Essentially, I have none.  I also realize that this is only the beginning of the wait for us, really; however, there is something that comforts me in knowing WHO I will be waiting for - or maybe not...we'll see how deep the crazy gets in a few months!

For the time being I check my phone a million times per day, and check the online Holt Korea forums every hour on the hour (if I can).  I know that all of this checking and re-checking won't make things happen faster or even at all.

I cannot make my phone ring by looking at it. 

However, it gives me a sick sense of comfort to know that I'm at least doing something, even if it's not actually productive or relevant to the outcome.

Truthfully, as incredible, amazing, wonderful, fantastic it is to know that our referral call is only days or weeks away, it's even more mind-boggling to fully grasp the fact that a referral call can't come without being matched with a child.  Meaning, our son or daughter is born - alive and breathing and crying and smiling and sleeping and blinking half a world away - they are REAL! 

This isn't a mere fantasy or figment of our imaginations; there is an actual, FACTUAL baby that is OURS in this world RIGHT THIS MOMENT.  We haven't received the call yet; but really, we're already parents!  I could just burst into tears; this is amazing! 

Who knew that we would be here after so much heartache and pain?!  Who knew my heart could feel this fulfilled and content?  Who knew my soul would be bursting with so much joy and hope?  God knew.  He has answered the desires of my heart.  And I cannot WAIT to lay my eyes on our sweet, little baby!

On a quasi-sidenote, we were also told that there is still a good chance that we could receive a referral of a girl; which took us back, because at first we had been told to expect a boy and only a boy.  So, if it ends up being a girl, we're going to have a lot of boy's clothes/toys/etc. to put aside for later!  Either way, we will be more than delighted!

I hope that the next post I write will be telling you dear readers about OUR CHILD; but in the meantime, be love, be well, be blessed!

LOVE LOVE LOVE,
*mandie*

Pictures from the Cancer Battlefield, Part 15: Adventures in respiratory failure, TTP, plasmaphereis, and dialysis (and VICTORY OVER THEM ALL!)

As I looked back on this blog, I realized that I have written very little lately; and even worse, I've written NO updates on mom's cancer treatment journey since her transplant on May 24th and 25th - oooops!

When I think about having to sum up everything that's occurred since that time, my mind is completely overwhelmed.  In short, my mom has encountered EVERY set-back that can possibly occur after a stem cell transplant.  From respiratory failure to TTP to kidney failure and GvHD - mom's experienced it all.

Instead of attempting to put all of these experiences into words, I think I will let the pictures do what they do best: the talking.

Mom hooked up to respiratory machines that helped keep her breathing when the fluid build up made it too difficult for her body to keep up.

Not long after mom's transplant, we started to notice that she was retaining fluid - A LOT of fluid.  In the span of about a week or so, she put on 30+ pounds of fluid.  As you might guess, this is extremely hard on the organs, especially the kidneys whose job it is to flush said fluid out of the body.  It was just too much for her kidneys.  They could not keep up, and the fluid continued to pile on.

Within the span of 12-24 hours, mom went into respiratory distress and respiratory failure.  The fluid build-up around her lungs was just too much; she couldn't breathe.  She was hooked to machines to keep her breathing (see picture above) and was very groggy.  I'm sure she remembers nothing from this time, and I think I only spoke to her once.  Her body was in too much distress to keep her awake for frivolous things like talking.

We discovered that her new stem cells (from her donor), had gone into work overload once inside her body.  In fact, they worked a little "too well", if you can believe it.  Once in mom's body, her new stem cells didn't like what they saw; they saw trauma and tiny, parts-per-million leukemia cells and they went ballistic!  

 (I should interject here that it is good that they attacked the last parts per million leukemia cells.  This is called graft vs. leukemia, and it is when the new/donor leukocytes attack any residual cancer cells and obliterate them.  Mom's new cells did just that.  She is completely cancer free!)

In an attempt to save their new "home" (ie: mom's body), they went into over-drive building up fluid around all her vital organs in an attempt to protect them from the enemy that they could not see or understand.  It was self-preservation - these new cells wanted to LIVE, and they were going to do whatever it took to survive.  How could they have known that they're attempts to live would inadvertently nearly kill them?

After a couple of days, mom's kidneys began working and got enough fluid off that she could breathe on her own without the respiratory machines.  It was such a relief; we were all so grateful.

But, things didn't seem to get better fast enough or even very much at all.  Something was wrong, but we didn't know what...yet.

We celebrated Father's Day with dad in mom's hospital room.  This was the leather and diamond bracelet we girls got him.  Mr. C was, sadly, off working on a computer system; but we Skyped later that day.

We said good-bye to, Debi, one of mom's night nurses who switched to working days down in radiology.  She gave mom those yellow pom-poms, because "she was mom's cheerleader". :-)

And then mom wasn't feeling well - AT ALL.  Mr. C was back from working in Iowa, and dad and my sisters were all gone when I got a phone call one morning that I needed to hurry over to the hospital NOW.  Since Mr. C and I usually came around lunch and stayed until midnight or later, I was worried; they wouldn't call me for no reason, especially knowing that I'm ALWAYS there at least by noon.

I was in a panic.  I threw my clothes on and rushed to the hospital.  When we got to the stem cell in-patient ward, I was handed a phone, and one of mom's doctors was on the line.  He told me mom had Thrombotic Thrombocytopenic Purpura or TTP; a rare blood condition that causes tiny clots all throughout the vascular system.  Mom's was caused by her body reacting to her anti-rejection medication - again, a VERY rare side-effect.  Left untreated it is fatal in 90% of cases.  Needless to say, I was terrified; and because my dad was gone, I was her next of kin and had to sign all of her consent papers for her procedures since she was too groggy mentally to be deemed fit to have her own best interests in mind.  Oh joy.  It reminded me of when my sister, W, had too many seizures in a row one December; and I had to act of her next of kin as she lay in a hospital room unconscious - bad memories.

Before I knew it, a surgeon was on the stem cell floor ready to insert a catheter into mom's femoral artery so they could immediately begin the treatment for the TTP.  One of mom's nurses and I stayed by mom's head (face masked, hands gloved, and body clothed in a plastic gown), holding her hand, caressing her head, and trying to soothe her with reassuring whispers as the surgeon set up a make-shift sterile field and sliced into her groin - there wasn't time for good pain meds; so, a local poke of lidocaine was all she got.

Once inserted, the plasmapheresis began:

Mom's FABULOUS technician, Rene, hooking her up to the plasmapheresis machine.  We saw him every day for 16 days straight.

Plasmapheresis can be likened to dialysis in a sense.  The process essentially pulls the blood from the patient's body and into a machine that centrifuges out the plasma (which contains the "bad stuff" - very technical, I know!) while at the same time replacing said plasma with clean, donor plasma in the exact, same amount.

It can take days or even weeks of daily plasmapheresis to get all of the unclean plasma out of the patient's blood system.  Mom had about 16-18 treatments total.  She would get very cold during the process; which can happen since the donor plasma has to be kept on ice to keep it "fresh" for the procedure.  So, Rene and I would wrap mom up like a burrito in heated blankets from the ICU Pixus station and fleece blankets from stem cell as well as a knit hat to keep her from freezing.

A photo of the plasmapheresis machine.  You can see the old, nasty plasma that was pulled from mom in the large bag toward the upper-middle of the shot.  It is the color of muddy creek water - clean plasma is roughly the color of creamed corn and slightly translucent. As you can see, mom's was in bad shape.

All this while, mom was also suffering from a mild case of graft vs. host disease or GvHD in her esophagus, stomach, and intestinal tract.  While mild (level one), it still made it difficult for her to swallow anything (even pills and water) and keep anything down.  So, she had been put on a high dose of steroids (protocol for treating GvHD).

In their usual fashion, they were exacerbating mom's fluid retention and kidney issues.  At the worst of it, her kidneys were only functioning at 5% of their ability - obviously not good.  So, the nephrology team here at CTCA decided that while she already had the catheter in her femoral artery, they would go ahead and do dialysis after EVERY session of plasmapheresis.  This is tough on the body and mind, but it was necessary; so, we hunkered down to try to support mom as the emotions ran high and the appetite, mood, and hopefulness ran low.

Mom receiving kidney dialysis.  She would receive Xanax to keep her calm and an eye mask to block out the light; so she could try to sleep through the procedure.

The plasmapheresis and dialysis continued for nearly three weeks.  Mom had lost her appetite after transplant and was now only getting nutrients (as well as her fluids and medication) via her picc line.  She couldn't walk, because the fluid build-up had weakened her leg muscles terribly and her fluid-filled feet hurt to stand upon.  Her kidneys would work, then play a mean, little game where they wouldn't work so well.  Then, her platelets (the last blood product to be created by the body, thus the last to show real signs of improvement after transplant) would drop frighteningly low only to jump back to a decent level a day or two later - needless to say, we were all emotionally exhausted by the roller-coaster that is life after stem cell transplant.

All the while, mom was being lifted up in prayer by faithful friends both at home and here at the CTCA (far too many to even mention) and remembered in gifts and cards (they mean SO MUCH to us all!).  Slowly but surely, every prayer was answered; often just in the nick of time.  I'd always heard, "God is never late, but always on time."; but I had no clue just how true that statement is until living out these "100 days" with mom.  He has always followed through on His promises; and He has never let us down - AMEN!  What a wonderful daddy-God we have!

After more than two weeks of plasmapheresis and dialysis and a couple more weeks of TPN mom was beginning to feel better - A LOT better!  Her appetite began to come back after not eating any solid food for nearly two months.  She now eats three small meals a day plus two or three snacks.  She began doing PT (physical therapy) from her bed, and she can now pull herself up, sit up, stretch/move her legs in bed, and stand while stretching from side to side.  She hasn't walked yet, but she's getting there!

Physical therapy machine that helps hold mom up so she can work on building leg strength by standing while supported.

Today, I am pleased to say that her kidney function is at 25% and rising!  She's doing so well that her femoral artery catheter was REMOVED today!  HOORAY!  No more dialysis for mom!  Believe me, she was over the moon about that news.

Yesterday, she and dad celebrated their 34th wedding anniversary:

Mom and dad - 34 years strong!

We shared cake (as we always do during celebrations) with the 2nd and 4th floor stem cell units:

White cake with mom and dad's wedding colors (purple and yellow) on left; peanut butter passion cake (SO GOOD) on right from our favorite local shop Cake Box Bakery.

So, how's that for an update?!  It was a long time coming, that's for sure and certain.  Every day is better than the last.  Mom's 100th day is September 1st, and believe it or not we are still on track to be out by that time.  This journey has reminded me over and over again that He cares for us, He wants us well, He is fervent and furious in His love and desire for us to be healthy/happy/whole, He IS the great physician, and He adores His children (which is ALL of us, every, single, person on Earth, in case you didn't know).  For all we've been through, we have been seen through - relatively unscathed, really.  How blessed are we?!

L-R: Mr. C, me, dad, mom, and W on mom and dad's anniversary - see, we're still smiling!

I wish you, wherever you are in this world so much health, happiness, hope, and laughter.  I hope your soul is light and your burdens too.  I pray the desires of your heart are flowing towards you as your troubles are whisked away.  I hope you have more reasons to smile than cry.  Most of all, I wish you all the love in the universe!

Blessings Blessings and MORE Blessings,
*mandie*