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*

"The Red Tide Rolleth" and a Diva Cup Review

So we had a little..........."pregnancy scare" this past week. I know, I know, calling it a pregnancy scare after sooooo many years of TTC (and failing) seems completely ridiculous and even kind of awful; but Holt's rules are that a biological pregnancy results in instant loss of referral.  There are ways to petition this if you already have your referral; but since we do not, I think it's safe to say that we would have been forced to give up the adoption.

I know to many people (especially those facing or who have faced infertility) it sounds strange to be worried about a bio pregnancy over-ruling an adoption; but to Mr. C and I, adoption is not a second-rate consolation prize.  It's a way to build our family that we would have chosen whether or not we had ever faced IF.  So, the thought of a pregnancy was incredibly bittersweet.

My cycles had been completely perfect, 28-day cycles ever since I completed my acupuncture and traditional Chinese medicine for PCOS last fall; so, you can imagine my surprise when I was LATE for my period this cycle!  I waited a whole week before I POAS - it was negative, of course...

While I wasn't expecting it to be positive, there was something terrible about looking at that blank, stark-white space on the test.  A flood of emotions came back to me; but surprisingly enough, I did not burst into hot, ugly tears the way I used to when we were actively TTC over a year ago (can you believe it's been that long already?!).  Instead, I knew that no matter the outcome I was still going to be a mother...one way or another...and that was incredibly consoling.

Anyway, by some cruel joke of Mother Nature's, my period was 12 days late!  Yeeeaaahhh.  By the end, I had taken 2 pregnancy tests and was virtually losing my mind!  I had very little cramping until the day before (when I KNEW AF was finally on her way); so, the entire (nearly) two weeks of waiting was nerve-wrecking to say the least.

I was imagining the angry back-lash from our agency if I had to tell them we were pregnant.  For some reason, I was just certain they would be as upset as the parents of a girl from "16 and Pregnant" would be upon hearing such news.  I'm not really sure why I thought this, other than our social worker, J, had warned us fairly sternly to NOT get preggo if we wanted this adoption to work out.  So, I lived on eggshells analyzing every twitch and twinge my body made.

Finally, twelve days past day 28, AF arrived in all her cramping, anxiety-riddled glory.  Again, slightly bittersweet; but mostly I just felt relief.  I am SO looking forward to being Baby C's mommy...I cannot imagine our first born coming to us any other way now than via the heart (as opposed to the womb).

Hardly anyone knew of this little "fright"; but my dear friend C was privy to my worries.  Today, I texted her simply "the red tide rolleth" with a smiley face.  I know she felt a mixture of relief and pain for us...just as we felt for ourselves; but in all honesty I know I speak for both of us when I say we are more relieved than sad today.  Truthfully. :-)

ALSO, I was really excited to use my new purchase:

Diva Cup, Model #1 (pre-childbirth)

That, my friends, is a Diva Cup menstrual cup.  For those of you who don't know what that is, it's essentially a little, silicone "cup" that replaces a traditional tampon during your menstrual cycle.

The cotton in tampons (unless an all-natural brand) are subject to bleaching and all sorts of nasty chemicals that we women, in turn, place in our most delicate of places for long periods (no pun intended) of time.  NOT good.  Also, the amount of waste created by throwing these feminine products into the trash is immense, especially when looked at in the span of a woman's entire lifetime.  A reusable menstrual cup like the Diva Cup is better for women AND the environment!

I'm not going to lie, it takes a bit of getting used to at first.  The cup itself can fit in the palm of my hand (and I have small hands); so, it's not as intimidating as it sounds.  The silicone it's made of is also incredibly soft and malleable.  When inserting, you merely fold the cup in half (again, it's VERY pliable) and place it in as you would a tampon sans applicator.  There is a very small stem attached to the bottom of the cup that helps in the insertion and removal process.  Some women have said they snip this off for added comfort, but I found that once inserted, I don't even feel it.  I also think that (for me, anyway) it greatly aids in the removal process especially.

So far, I have worn it yesterday afternoon, all last night, and all of today and night (it is 11:15 pm as I write this now).  I am extremely pleased with my purchase!  I have only had one problem with leakage in my limited amount of experience time; but I feel confident it was because I had actually not checked the cup in the proper amount of time, and I literally over-flowed the 1/2 ounce cup.  It's so comfortable, I really forgot that I even had it in and needed to check it - whoops!  Last night, I was certain it would be too uncomfortable to wear all night; but whether sitting, standing, or lying down I simply cannot feel the cup at all.  So, I wore it all night without any issues.


I have also changed it in a public bathroom stall (something I had thought would be strange and difficult to maneuver for some reason).  If you can't get to sink to fully rinse your cup out, it's equally as sufficient to wipe it out/off with toilet tissue and re-insert.  Again, I had thought this could be awkward and down-right yucky; but it was really no big deal.


Each time I go through the process of removing/cleaning/re-inserting, I get faster and more confident.  In short, I am delighted with my purchase!  And, if you order from Amazon, you can get a price that is at least a few dollars off the regular price I saw everywhere else online.  Double delight!

This post has been a little random (and way overdue, by the way!  sorry about the general lack of writing lately, dear readers!); but I hope that at least the Diva Cup part was informative. :-)

Have a beautiful, restful night, my lovelies!
*mandie*

A Truly Happy Father's Day

Happy Father's Day to all you dads out there!  Thanks for the strength and guidance and protection and hope and love and nurturing you rain down upon kiddos everywhere!  Dads are so important, and sometimes in this mommy-centric world, I think we tend to forget just how big your roles really are to the children you love and love you back. 

You are the rising sun.  You are the hero.  You are the safety zone.  You are the ladder.  You are the compass.  Without you, there is an unavoidable whole in a little one's heart.

So, thank you to all of you dads out there who didn't run, who are proud and stand tall and take initiative and look foolish with love for your kids or those you love like your own kids.  You make me smile and give me hope for the future.

And HAPPY FATHER'S DAY to the two very special men above (sorry, they never pose for a proper picture, argh!) - my dad and Mr. C.

No matter how far-fetched and wild our dreams, my father has always supported what my sisters and I have reached for in our lives.  He has been a constant source of guidance and is one of our biggest cheerleaders.  He has always expected a lot from us in every aspect of our lives, but has been the first to be forgiving and instructive when we've messed up or gotten off track.  I am so blessed to have him in my life.

Mr. C is the kindest person I know; he is always thinking about others.  His beautiful heart is most definitely going to make him an excellent father to Baby C; this is one lucky kiddo!  It's hard to believe as I write this, but this is our LAST Father's Day without our wee one (at least, without knowing who they are, etc.).  I cannot wait to see Mr. C embrace daddyhood; he's going to be a natural.

<3,
*m*

Yellow/Turquoise/Black and White Nursery Update

While Mr. C and I were home for two weeks back in April/May before mom's transplant, we did our best to add some things to Baby C's nursery.  It's hard for me at times, because I feel as though our entire planning process has been entirely muddled and our energies (obviously) spent in other areas.

I had an idea that this nursery was going to be amazing, bright, modern, and fun - a complete sanctuary of pure kid pleasure that any little one would LOVE spending time exploring and creating in.  But since we've been so back and forth, it hasn't really worked out like that.

We are both really looking forward to being able to devote some real time and energy to the decor in this room.  In the meantime, here's a look at what we got done while home last time.

We added the little book/toy shelf, but soon we are adding a whole wall of book shelves; so it will soon hold only toys.  The soft "tubs" are in bright teal; although on here it looks like a darker blue.

The "Alphabet City" print won't stay perched on top of the shelves, but will be hung above it.  I just wanted to get an idea of what it would look like.

Trying to decide whether to put this wall decal on the kiddos' level below the window or not.  It says, "In my world, everyone's a pony; and they all eat rainbows and poop butterflies. -Dr. Suess".  We LOVE it!

Some random artwork that we are going to hang on the wall  above the changing table/dresser.

Close up of two of the prints we bought from ReStyle Shop on Etsy.

This rocker used to be mine when I was little.  Can't decide whether to paint over it, or just leave it as it is and maybe put it in the living room.

I designed this for Desmond's (Baby C) nursery a while ago.  Mr. C did the hard work of interpreting my basic sketches into a true work of art; then, we had it printed on wrapped canvas.  It's a quote from Cervantes which says, "Faint heart never won fair lady."  I love the idea of Des being a chivalrous, little gentleman knight. :-)

Obviously, we still have A LOT of work to do; but I think it's starting to get there...

Love and Blessings,
*mandie*

Pictures from the Cancer Battlefield, Part 14: TRANSPLANT PARTY!

Today was mom's REbirthday!  All the months upon months of chemotherapy have been to get to this point - transplant.  God has been so good to her and all of us.  We know we have been blessed, and I know that we have learned to never take one single day of life for granted.

Mom's donor was in Europe (roughly 7 hours ahead of us); so, last night a little after midnight we started praying for him.  As it turns out, because of when the cells arrived here in Chicago, we can know that we were praying for the donor right around the time they were harvesting his stem cells 1/2 a world away - SO COOL!

The cells arrived earlier than expected (around 3 p.m.), and then were processed by the lab here at the CTCA.  At 5:54 p.m., mom's transplant began...and thus her new life of total restoration and divine health!

I will let the pictures below speak for themselves, but I want to reiterate how very grateful we are to mom's donor, her doctors, her nurses, her fellow stem cells patients and their families, and everyone here at the Cancer Treatment Center of America.  She was told her situation was hopeless (stage four Philadelphia positive adult acute lymphoblastic leukemia DOES seem pretty hopeless when looking through the eyes of the world); but they NEVER turned her away and NEVER gave up hope.

And of course, I have to thank God above for seeing her through.  He is Jehovah Rapha, "the God who heals you"; and He has made good on every promise He has made to my mother.  I am not naive, I know the outcome could have been different; so I rejoice every day that He has blessed us with more time together.

Both of mom's doctors got a bag like this.  Dr. Redei got a bottle of chocolate wine from our favorite coffee/wine shop in Branson, MO - Vintage Paris.  Dr. Abutalib got a bag of gourmet, cola-flavored coffee (his two faves are Pepsi and coffee).

Banner I made mom for her hospital room.

A closer view of the banner I made for mom.

Decorations above at head of her hospital bed.

Mr. C made a couple of these Eiffel Towers for mom's room.  The trophy in the back is from one of mom and dad's employee's sons.  Both boys race carts and gave their first trophies of the season to mom, because "She's a winner!"  SO adorable!

One side of mom's room.

The other side of mom's room.

Mom's doorway.

My attempt at drawing "la tour Eiffel" - haha!

Mom napping before transplant.  Her numbers were quite low today (which is normal and what they want), but she was very tired.

Words of inspiration from the chaplain.

Mom wearing the cute, pink mustache we got her.

Dad and mom taking a moment.

Channeling Inspector Poirot. ;-)

Mom and her nurse, Kim.

Mom and PCT, Lisa.

I made treat bags for all the nurses and doctors and other friends of ours around the hospital to celebrate mom's REbirthday.

Inside each bag was a hand-made chocolate mustache on a stick, a party noise-maker, a bag of Ghiradelli chocolate squares and Jelly Bellies in cappuccino and French vanilla flavors, and a stick-on mustache.

A few of the chocolate mustaches that Mr. C and I made.

We made cupcakes for the doctors and nurses.

Nancy, Kim, and Ron bringing in mom's donor's stem cells (ie: mom's new immune system)!

Making sure everything's right.

Mom was ZONKED during/after transplant!  LOTS of steroids and Benadryl given beforehand...she slept pretty much the entire time.  Prograf is anti-rejection medication.

Mom and the "three elves".

Mom and Dr. Redei - photo taken a few days ago when she was admitted for transplant.

Dr. Abutalib with his "cola coffee".

There were so many pictures from today and the past few days, I had a hard time choosing which to post here; but I hope you can see how joyful we all feel and are about this milestone in mom's healing journey.  Every day she is going to feel better and better!

We are so thankful to all of you for your support and continued prayers.  We will never be able to thank you enough!

Love and Blessings to You and Yours,
*mandie*