Nicole A Webb

re: update on ma for october

2014-10-21T11:32:00.001-07:00

October 21, 2014

A tentative plan:

It's been a week since Ma's last monthly exam, and we continue to celebrate that she is now 3-months cancer-free!! We are still aware she has an ongoing high risk of recurrence. However, with each passing month, the likelihood of cancer returning decreases. She will have 3 more monthly exams for a total of 6 months post-treatment. If they remain clear, then her ophthalmologist said he'd be comfortable extending the time between her exams to every other month.

The longer stretches between exams may allow Ma to travel back home to Cote d'Ivoire, Africa, to see her family. By that time in January, Ma will have been here in the States for 18 months of her very short 2 and 1/2 years of life!

We are watching the Ebola crisis closely as it is knocking on the door of Ma's home country. The talk of a flight-ban from West Africa is a real concern. We can't run the risk of Ma going home, then being quarantined in Africa and unable to return to the States for follow-up care. We are praying that the Ebola outbreak gets under control soon, and that the suffering and heartache does not continue to spread.

- - - - - - - - - -

Ma's eyesight:

I remember asking the question of her ophthalmologist over a year ago ... my very first interaction with him ... how well Ma can see. I was on a fact-finding mission. Since Ma did not walk or talk at that time, knowledge of her vision capacity would have been helpful to know how to care for her properly. He said in a polite, but blunt way ... we are first going to save her life, then try to save her remaining eye, then, and only then, we'll check her eyesight. That was quick shot of reality!! Well, I'm happy to say that after making sure her life was not in danger (i.e. ensuring cancer did not spread from her eye to her brain), then working very hard to save her remaining eye, we are now onto step #3: assessing her eyesight. We have an appointment at the low vision clinic on Halloween.

At this appointment, we hope to fill in any gaps about her vision. Thus far, we have only been able to gather information based on our observations. Clearly, she has depth-perception issues due to the lack of one eye. She does not see well in low light, which may indicate damage to her retina, likely from the treatment she has endured for a year now. We've also observed she has a downward peripheral blockage. She trips over shockingly large items on the floor and needs to feel with her feet when there are stairs or any changes in elevation to avoid falling ... which she does often. This blockage is due to the tumor on her retina. They can't remove it, only shrink it and kill the cancer cells that make it. It is currently completely covered in scar tissue and therefore dormant. But it will never go away.

All that said, as many of you can witness first-hand, her vision loss does not slow her down in the least bit!! We hope that the low-vision appointment will equip us (and eventually her parents) even better with the ability to help her learn and grow well with low-vision.

- - - - - - - - - -

Thank you all for celebrating with Ma that she remains cancer-free. We appreciate all the kind words and encouragement.

Now for all of you who are praying people, please continue to pray that Ma remains cancer-free. Her next exam is on Tuesday, 11/11. Please also pray that she stays otherwise healthy. We are currently working on getting her vaccinated for normal childhood illnesses. Due to her weakened immune system, she has had none thus far. Please also keep her family and ours in mind. Finally, please pray, not only for Ma's sake, but for the sake of so many, many people in Africa, that Ebola is eradicated.

question re: ma - how will you give her back?

2014-10-10T11:53:00.001-07:00

October 10, 2014

If ever there is tomorrow when we're not together...

there is something you must always remember.

You are braver than you believe,

stronger than you seem,

and smarter than you think.

But the most important thing is,

even if we're apart ...

I'll always be with you.

- A.A. Milne

A copy of this quote hangs on one of the walls in the pediatric oncology ward at the hospital. I read it over and over again as we paced by it during our one and only (believe it or not!) in-patient hospital stay. Ma had only been with us for 5 days. She was still scared of me. Probably not as scared as I was of her though!

Much has changed since that time in the hospital. Ma now feels like she always has been and always will be a part of our family. Many people have asked me the question I'm about to answer. I've been mulling it over for quite some time, but haven't come up with much. I've been thinking about it more and more lately as we get closer and closer to her going "home". If she receives more good news during her monthly exam on Tuesday, she will be one month closer to when we need to say goodbye.

Question: How will you give her back?

I had two interactions with the same nurse in the infusion center last winter trying to answer this very question. Both time I was in tears ... but for very different reasons.

1. Round 4 of chemotherapy was by far the hardest. Per the usual, Ma had gone under anesthesia in the morning so her ophthalmologist could get a good look at her eye and do whatever needed to be done - cryotherapy, laser therapy, chemo injections, whatever. Normally, Ma would awake from anesthesia quite well - a little irritated - but ready to eat and get out of there and into infusion. That day was different. She awoke quickly and had to be administered albuterol to get her coughing and breathing under control. As a result, she never fully recovered from anesthesia. I had to take a kicking, screaming child, who was wearing an eye patch over her one working eye (therefore making her blind), to get a blood draw, then up to the infusion center for several hours to get her monthly chemotherapy. It was rough, to say the least.

I spent 2 hours of trying to distract her, feed her, hold her, rock her, dodge her punches, keep her from yanking out her port and tubes. I was exhausted, sweaty, sporting a new shiner (I dodged when I should have weaved), and on the verge of tears when one of the nurses (who I later found out was on her way home) came to my rescue. I pushed the stroller, she pushed the IV pole. We walked for two hours just to keep Ma calm. After filling in this angel-nurse on all the details about Ma as best I could, she asked what many people have ask: How will you give her back?

I don't know, I answered.

I then got lost in my thoughts for a while. I was so weary! I was beginning to wonder if we had bitten off more than we could chew by taking Ma into our home. Could we give her back now? Was that even an option? I mean, as difficult a process as it is to foster or adopt, acquiring Ma was about as easy as checking out a book from your local library. Maybe there's a drop box. Could I drop her in, knowing that she would be discovered, shut the door and walk away? I could do it in the cover of the night so no one would see. Maybe I'd feel less guilty then.

I've learned not to open my mouth and share all my inner most thoughts all the time. After circling the infusion center a couple more times, I simply again whispered, I don't know. And left it at that.

2. Round 6 of chemotherapy went about as good as one could hope. The exam under anesthesia in the morning went off without a glitch. We were able to scurry up to the infusion center, get into a chair right away and start the infusion in record time. The nurse I spoke to extensively during round 4 watched me walk in with Ma, who was sleeping off the affects of the morning. I don't know if it's the way Ma clung to her momma the first year of her life or what, but she would wrap her arms around my neck and her legs around my torso and hang on tight like a koala bear. You wouldn't even have to hold onto her! But, she would only do that to those she knew and trusted. It was both endearing ... and potentially heart-breaking at the same time.

As she clung to me during the entire time of her infusion, the angel-nurse would occasionally nod and smile in my direction. Towards the end of Ma's infusion run, the nurse strolled over and again asked me again how I was going to ever give her back.

I don't know, I answered again with tears in my eyes.

I couldn't even bear to get lost in my thoughts that time. I needed to get through the day. Just her question now had the ability to steal my breath away. After a brief, oxygen-depleted moment, I took a deep breath and again whispered to her, I just don't know.

- - - - - - - - - -

That was my answer then. That is my answer now.

Since I am a logical person and quite a rule-follower, I will do as expected. I will give her, along with one suitcase, to someone who will take her to the airport and put her on a plane that will take her back to her family in Africa.

I anticipate it will be painful. I expect it will come with some level of relief as well. I know it will be the hardest thing I will ever do. Harder than enduring over a year packed with chemo, radiation, anesthesia, medicine, port-flushing, blood draws, exams, hearing aids, prosthetic eyes, diapers, sleepless nights, poopy messes, tantrums, etc.

Yes, harder than all of that.

And all I can do is pray that even if we're apart ... even when we're apart ... she'll always know I am with her.

re: the race marked out for me

2014-10-03T11:40:00.001-07:00

I hate to run. Even though I come from a family of runners, the running gene somehow skipped me. Heck, the athletic gene skipped me! However, that doesn't stop me from trying. In fact, I ran cross country and track in junior high. Here's a picture of me as proof:

I was recently retelling an incident I had in one of my cross country meets to my daughter, to remind her of the importance of perseverance. I told her I was having a terrible run. (Well, more terrible than normal) It was rainy, muddy and the course was hilly. Training for this type of terrain is difficult when you lived in an area of Northwest Ohio where farmers joke that once the corn is cut, you can roll a bowling ball all the way to Lake Erie. Anyways, I was nearing the end of the race when before me arose Mount Everest. You've got to be kidding me! So, I took it. Slow and steady. Until I reached the top. Then promptly vomited.

- - - - - - - - - -

This week may not have been Mount Everest, but it was at least Mount Mitchell of the Appalachians. And this is me ... like in that race ... spilling my guts at the top of the mountain:

Ma has recently transformed from our "borrowed baby" to our "temporary toddler". She turned 2 in July and has taken on many of the traits that give 2yo's their main descriptor: terrible. She hits, kicks, screams, pushes, pulls hair, and throws just about anything: tantrums, food and toys. She, and others like her, are the reason authors pen books with titles like Making the Terrible Twos Terrific and Taming the Terrible Twos. They write these books to give us readers advice ... or maybe some hope ... or at least consolation.

I don't have any of these books. Nor can I find my Supernanny book. And I must have gotten rid of What to Expect in the Toddler Years, the shock collar and the cage we used to use. (Just kidding!) Actually, my two girls weren't all that terrible at 2. So, right now I'm feeling a little overwhelmed. Exhausted. Frustrated. Even angry. I didn't sign up for this! I signed up for the glory of taking care of a child with cancer. I signed up for the warm feeling that you get when you know you're making a positive difference in a person's life. I didn't sign up for tantrums in the grocery store, kicking and screaming at the playground, punches to the face, or poop-smeared sheets. In fact, this is supposed to be my year. My first year without preschool children at home. My first school year with my days. All. To. Myself.

I must have signed up for the wrong race! I wanted the one with a flat course. I wanted one with no unforeseen hurdles. I wanted one with a definite finish line. Not this one. Not this undulating, obstacle-containing, never-ending one!! I'm not cut out for this!

- - - - - - - - - -

... let us run with perseverance the race marked out for us.

These words are from Hebrews 12:1. (If any of you Wheaties from the incoming class of 1992 are reading this, my apologies, as I'm sure you will now have this song stuck in your head for days) The words of Hebrews 12:1-3 came to me this week. I like how the Message puts it:

Do you see what this means - all these pioneers who blazed the way, all these veterans cheering us on? It means we'd better get on with it. Strip down, start running - and never quit! No extra spiritual fat, no parasitic sins. Keep your eyes on Jesus, who both began and finished this race we're in. Study how he did it. Because he never lost sight of where he was headed - that exhilarating finish in and with God - he could put up with anything along the way: Cross, shame, whatever. And now he's there, in the place of honor, right alongside God. When you find yourselves flagging in your faith, go over that story again, item by item, that long litany of hostility he plowed through. That will shoot adrenaline into your souls!

Adrenaline into your souls!!

Yep, that's just the shot I needed. I will finish this race because this is the one in which God put me. He gave me the uniform and the shoes. He placed supporters along the way to hold up signs of encouragement. He planned for water stations along the way to keep me hydrated. He also has strategically positioned people along the course to give me a pat of encouragement ... just like the person who was there for me in my junior high race long ago. And I will finish, just like I did then. Not because it's easy, or free from nausea or pain, but because God signed me up for this race. He pinned into place my running bib. He measured out this race and set the course.

He marked the race out for me.

Thank you all for holding the encouraging signs, manning the water stations, and giving me the much needed pat on the back!! Hugs to you all!

* top photo compliments of jacsonquerubin of flick creative commons, edited by me.

re: for as long as they have breath

2014-09-29T11:21:00.000-07:00

There are a handful of kids I just can't stop thinking about lately.

First, there's Charlie: Charlie was born on April 10th with an undiagnosed congenital heart defect called Obstructed Total Anomalous Pulmonary Venous Return. He is currently fighting every day for his young life at CS Mott Children's Hospital. I have been following his progress via his FB page, Pray for Charlie.

Secondly, there's Amelie: We met 3yo Amie at the radiation center early this past summer. Amie has rhabdomyosarcoma, a rare form of cancer, that has metastasized to her brain. She was receiving radiation treatments at the same time Ma was. Amie has been fighting this for over 2 years now and is currently undergoing chemo. You can read about her story on her family's blog, Amelie's (Unwanted) Adventures.

Finally, there's Chad: Chad was diagnosed last week with inoperable brain cancer. His 4th birthday was Friday; his 1st treatment was today. He is the grandson of former UMICH head football coach Llyod Carr, so the Michigan community has rallied in support of him in a big way.

I can't say I really know any of these families personally. While Ma played with Amie several days this summer and I chatted briefly with her mom while we waited for the radiation tables to be prepped, I only "know" the others through social media and/or mutual friends. However, while I don't know them personally, I know them as Mott Children's Hospital parents.

I know they cringe at the sight of (734) 232-0000 on their caller ID.

I know that where the hospital was once a labyrinth of mysterious halls, they now can navigate it blind-folded and often assist others to their own children's appointments.

I know that they, like I, was miffed when the hospital went to "healthy" drinks only, and that they then had to remember to purchase their fully-loaded, non-diet, caffeinated beverages elsewhere.

I know they've now figured out the best place to park in the baffling structures known as the parking garages. They also know that the parking attendants are amazing.

I know they know how lucky they are to be near a top-notch hospital with every specialty under the sun.

I know that they now realize more than ever that every day with their children is a blessing, a good and special gift.

I also know while they may not ask for it, they need your support. We all have different strengths and gifts. So, if you know these families, or if you know other families like them, I encourage you to find a way to help.

If you're empathetic, a hug would be nice. Rejoice when they rejoice. Cry when they cry.

If you can bake or cook, I'm sure they'd enjoy a meal.

If you have extra money, I'm positive their funds could use a boost.

If you have extra time, a good idea would be to offer to babysit their other kids during hospital appointments, or run errands for them, or clean their house, etc.

If you're good with words, a note of encouragement never goes unnoticed.

And while I never want it to be an excuse not to act, here's something we can all do: PRAY.

This verse caught my attention yesterday and gave me the answer that I had been searching for over the last several months.

I love the Lord because he hears my voice and my prayer for mercy. Because he bends down to listen, I will pray as long as I have breath. - Psalms 116:1-2

Many of you recall a request I made back in June before Ma had radiation: Please Pray for Ma. I was looking for a miracle so we didn't need to proceed with a treatment that, while it could save her sight, would increase her chance of secondary cancers from 25% to 50%. The miracle did not happen. Radiation did. 20 rounds of it. And I was left to wonder: why do we even pray at all?

The answer finally came yesterday: Because I have breath. Because I am alive. Because I am able.

I pray because I've regained hope. Hope for a new world where there is no illness, no pain, no destruction, no oppression, no sorrow. We'll get there someday. I wait expectantly for that day ... because I have no other choice, for the opposite of hope is to despair. And that really just can't be an option.

Please pray for Charlie, Amie, Chad, Ma and the many others ... too many others ... who are fighting a big fight right now. Pray for their families. They need you to hope on the days they don't feel hopeful. They need you to pray on the days they can't. They need you now, and they will need you later. Because this is an experience that will live with them forever ... for as long as they have breath.

- - - - - - - - - -

Charlie's gofundme page can be found here.

Amie's gofundme page can be found here.

Chad's family has set up a fund to benefit pediatric brain cancer here.

Ma is on the every-so-gracious charity funding known as M-Support.

re: who's that girl?

2014-09-28T12:41:00.000-07:00

September 28, 2014

We have had the opportunity to meet some wonderful new families with the onset of school this Fall. As a result, we've received many new questions about Ma. I sometimes forget that she clearly doesn't look like our own two daughters, and that her eyes don't look exactly normal. As you can guess, this raises lots of questions from curious people. So, I thought I'd give a brief synopsis for all our new friends.

I will try to keep this short and sweet. (And it won't come close to rivaling the rant I wrote last spring.) If you want further details, please peruse the re: ma tab above. I have also highlighted links throughout the post that will lead you to previous posts if you'd like more info on certain topics.

Background

Ma Korotoum Sylla is a 2yo little girl from Cote d'Ivoire, Africa. Baby Ma (pronounced like the month of May) joined our family 13 months ago. She came here through Children's Medical Missions West, a medical mission based out of Ohio. CMMW brings children to the States for medical treatment before returning them back to their parents.

The medical personal in Cote d'Ivoire originally thought Ma might have had glaucoma. Her parents, about whom we know practically nothing, put her on a plane right around her first birthday thinking she would return in a few short months. Instead, it was determined once she arrived here that she had bilateral retinoblastoma with large tumors in both eyes. Her left eye was removed immediately, and a plan was put into place to save her right eye.

Treatment

I just went back to a post from April to refresh my memory of all that Ma has endured. It is absolutely sobering. And, if the numbers posted there weren't enough, many of them have doubled since then. In fact, our hospital visits are now just a couple shy of 80! Anyways, Ma has had 6 rounds of chemotherapy. She has been under anesthesia at least a dozen times (I've lost count), where she has received cryotherapy on the main tumor in her right eye and/or intravitreal chemo injections. While the main tumor responded to all of this, there continued to be vitreous cancerous seeds, small portions of the main tumor suspended in the fluid of her eye. These are very difficult to treat. A fairly new procedure, intra-arterial chemo, was attempted, but failed. We then had to make the very difficult decision whether to proceed with radiation (risky long-term effects) or enucleation (removal of her eye). After lots of prayer and discussion, we decided to proceed with 20 rounds of radiation (which included 20 sedations) in a last-ditch effort to save her eye. In addition to all that, she wore a Broviac catheter for nearly 10 months, then sported a PIC line for the month of radiation. At least those provided for an "easy" blood transfusion, and many, many blood draws without pokes. Additional fun hardware includes hearing aids (which she hardly ever wears) and a prosthetic eye. PHEW!!

The Plan
Bonus material here for everybody ... old friends and new ... who have been asking about "the plan". Generally speaking, there is no definite plan in place. It's been about 2 1/2 months since Ma's last radiation treatment. Her exam under anesthesia looked good in August and September. If her eye continues to remain cancer-free until December 2014, her doctor said we could begin discussing a 3-month trip back home to see her family. She would then need to return to the States for more follow-up care. Ma needs to be closely monitored because she has had the most severe case of retinoblastoma and is at high-risk for cancer to recur in her eye for 2-3 years following treatment.

Prognosis
If Ma reaches age 5 and remains cancer-free in her eye, the likelihood of cancer returning to her eye is very low. However, since she has genetic retinoblastoma, she is more susceptible to getting secondary cancers as she ages. Genetic retinoblastoma patients already have a grim 1:4 chance of secondary cancers. Radiation caused that ratio to move to 1:2 ... thus the continued guilt and questioning about that decision.

Final Words
This explanation is mostly devoid of the emotional journey that our family has traveled this past year. It has been a rocky one at times, but all-in-all, it's been a good experience for our own children, and an enlightening experience for me. The journey is not over yet and most likely won't be for quite some time. We continue to pay visits to the hospital. Last week it was audiology, next week it's her "eye guy" (to check her prosthesis), the following week is another exam under anesthesia.

We welcome your thoughts and prayers as we continue to care for little Ma. Thank you for your interest and support. We have always been blessed with supportive family members. But the outpouring of love from our neighbors and friends over this past year has truly been an amazing experience!

re: intro to reproductive health

2014-09-24T11:21:00.001-07:00

I just finished reading the ever-so-popular-with-teenagers-and-tweenagers book, The Fault in Our Stars by John Green. It was a quick read ... thankfully ... because my very own tweenager was watching me read each word and turn each page, waiting for me to finish so we could watch the movie together. She had read it a few weeks before. I had been avoiding it altogether because the plot centered around kids with cancer. However, with our own cancer patient being NEC 2 months (to use lingo from the book - No Evidence of Cancer), I decided I was ready to read it.

As you would expect from a bestseller book about kids with cancer - it was good and sad. It certainly took me back to the days I spent in the infusion center last winter, watching the teenagers get their chemo - the same teenagers that should have been at school, being bored to tears by their algebra teacher, gossiping with their friends about their crushes, and running down the halls so not to be tardy to their classes. Instead, they were laid up in hospital beds and chairs, listening to their iPods in an attempt to escape their circumstances and pain, and having to be assisted to the toilet by a nurse ... or cleaned up by the same nurse when they didn't make it.

Though the images and emotions that the book uncovered were strong, surprisingly, what struck me most about the book was that I had let my 10yo daughter read it without previewing it first. Guys, it contains curse words and teenage sex! I now can no longer believe that my daughter does not know the dark, black curse words printed on the white pages of that book, or that teenage sex happens. I can no longer live under the assumption that my daughter is as innocent as I would like to believe she is. She may not have been anyways, I suppose. Several of her peers had read the book as well. And as we all know, kids talk.

You see, the thing that I realized while reading this book was that during the time I was knee-deep assisting a 2yo child with cancer this last year, my 10yo was growing up ... and I was the one who was being naive. I failed to notice. Or, truth be told, I chose to remain unaware.

- - - - - - - - - -

My husband and I sat with fellow parents in her 5th-grade class during curriculum night a couple of weeks ago. It began with the usual - reading is good so do lots of it, writing should be in complete sentences by now with correct punctuation, for math, they will continue using the awful math curriculum, etc. Then we got to some new stuff, not the least of which was reproductive health. Her teacher passed around the books they would be using as a guide. She said that we were welcome to preview the videos that she would be showing as well, but apologized that they were from the same era as the book ... so, VHS tapes. One parent cleverly quipped: It's not like the material has changed much. True. And apparently my reaction to reproductive health has not changed much either. I felt the warmth begin to rise in my cheeks as soon as the book was handed to me from a neighboring parent. I could very well have been back in middle school, shifting uncomfortably in my chair, not daring to make eye contact with anyone. Get it together, Nicole!

- - - - - - - - - -

While I've tried to keep an openness in my relationship with our daughter that allows for any and all topics of discussion, reproductive health has unintentionally fallen victim to censored status. It has been reduced to a couple of books that we've worked our way through quite uncomfortably.

However, having just finished the curse word/teenage sex book, as well as being informed of reproductive health coming up this year, I felt the need to address the topic of sex again with my daughter. She didn't want to talk about it. I reminded her that everyone of us is here because of sex. (Well, almost everyone. My youngest's journey to existence started with years of sex, but ended with a syringe, but that's a story for maybe 7th-grade reproductive health.)

Well, I just don't like to think about you having sex. - she said.

(I don't ever want to think about you ever having sex either. - I thought to myself.)

I prefer to think of it as God creating each and every one of us. - she finished.

- - - - - - - - - -

And there you have it: the age-old clash between science and religion. This particular skirmish of the mind is especially wrought with tension as it provides a one-two punch of embarrassment and guilt. The science of reproductive health embarrasses by involving areas of the "bad touch zone" (to use doctor terminology). Religion guilts by crusading for sexual purity, which can mean a variety of things to a variety of people.

How is a 10yo supposed to reconcile with sex when both science and religion suggest it's such an awkward topic?

I'm not really sure. I better figure it out though ... then help her figure it out ... because this is happening. Here we go!

*photo from flickr creative commons akrabat

re: dear solicitor

2014-09-19T11:21:00.001-07:00

Dear Solicitor,

I am writing to tell you that the "No Soliciting" sign that hangs on our door applies to even you. Please be so kind as to heed it in the future. It is there for several reasons. They are as follows:

1. First and foremost, it is there to protect me and my family. I am a stay-at-home mom with any where from 1 to 3 young girls at home with me at any one time. I am charged to protect them. One way I do that is to avoid strange men (it's always men, isn't it?) from coming uninvited to my front door. I don't like that the world has come to a point where I must be cautious of those unbeknownst to me, but it has. I'm sure you haven't contributed to that stigma (at least, I hope not), but I still need to be cautious. That is why when you asked for a bottle of water, I went and got it for you after securely shutting and locking the front door first. I am kind and trusting when trust is warranted, but I try not to be careless.

2. The sign is also there to protect my house. You came at a bad time (as always). It was evening ... dinner-making, bath-taking, fight-breaking, nose-wiping, bum-diapering, homework-typing time. I only decided to answer the door when your knock/doorbell sequence sounded distinctly like the sequence I usually get from the UPS guy. We had been desperately low on coffee, and he was expected that day to deliver a much-needed supply (he's an angel, that UPS guy!!). I thought I would only be pulled away momentarily. As it turned out, you were there. As much as I like to be direct and polite, you were persistent, leading me to spend more time than I was planning. During the time I was with you, dinner began to burn on the stove because I was not there to stir it. Our 5yo decided it was time to pull out the markers and color. This was fine, except I was not able to grab the permanent marker from the box before she used it on the kitchen table. Finally, our 2yo spilled her cup full of goldfish crackers on the rug and proceeded to dance on them and smash them into the carpet. These things are not your fault in and of themselves, and if I'm being honest, they happen more frequently than I care to admit. However, they may not have happened if I had been available to stop them that evening. Instead, I was chatting with you, trying politely, but quickly to figure out why you were there and what you wanted. When you finally revealed the literature you wanted to me peruse, it made a grand entrance from your pants. I don't know if it came from your back pocket or your drawers - and I don't want to know - either way it was sticky and wet. I deal with wet, dirty and sticky enough throughout the day. I don't need your filth to add to my now smoke-filled house with a newly stained table and a mess of crackers ground securely into the fibers of our rug.

3. The sign is there to protect my peace. When you knock, and I know it's you and not the UPS guy, I am faced with a decision to answer or not answer. You clearly know we are here due to the loud music of my 10yo and the fact that my 5yo is staring at you through the mail slot in the door yelling that, "Someone's here!". If I don't answer, I feel bad for being rude. If I do answer, I am forced to be rude because I don't have the time or interest in your spiel and will inevitably cut you short. It's a lose-lose decision I must make, followed by a lose-lose scenario between you and me. You have forced my hand, and I'm now mad at you. My peace is lost.

4. Finally, (and the most simple reason), I just don't like soliciting. I'm sure there are studies that point to soliciting as being an effective way to "spread the word", "gain support", "sell and item", etc., but I just don't like it. Period.

I realize I don't need to share my reasonings with you for the "No Soliciting" sign on my front door. However, I thought it might help you think twice when you are faced with another such sign on another's door along your canvassing route. Please take notice, don't disregard it, and move quickly onto the next house.

Sincerely,

Seemingly boorish and blunt; actually just trying to protect and keep peace

P.S. A bonus piece of advice: get some new material. The I-live-in-the-neighborhood-and-my-parents-are-making-me-ask-for-support-for-an-upcoming-trip-song-and-dance doesn't work when you look like you're 25 and smell of cigarette smoke.

* photo compliment of flickr creative commons

re: i wonder

2014-09-12T14:02:00.000-07:00

About a year ago, I made a hasty comment to a person I had just met. That comment has caused me to waver between embarrassment and resolution ever since. The sentiment grew out of a conversation this woman and I were having about my initial interactions with Ma, and how there was an obvious disconnect between the two of us. I talked about the concern I had for not knowing Ma's family, culture, religion, socioeconomic status, etc., and how I never really could understand her emotional history not being her biological mother. All of this led me to the comment: This is just not how it's supposed to be! Kids should be with their biological parents.

The person to whom I stated this was the mother of two adopted children.

I apologized and backpedaled immediately after removing my foot from where it was squarely planted in my mouth. Certainly she knew I didn't mean instances where the parents were gone and no other family members were willing or able to provide care. Clearly she knew I wasn't speaking about cases of abuse or neglect, which were the reasons why her children now call her mom. She knew that. Right? I'm still embarrassed as I write this.

The lesson learned that day was to know my audience and to watch more closely what I say. The woman was gracious in her subsequent interactions, but I had undoubtedly dredged up pain, for which I felt terrible.

I have thought about that comment quite frequently throughout the now 13 months Ma has been with us. Even though I said it to the wrong person in the wrong context, I believe it to be true even more so now than ever. However, the reasoning has been nuanced over this past year by my own observation and recent clarification.

I was previously inclined to believe and fear that I would not be able to love, care about, understand, etc., a non-biological child. That has changed. I now know without a shadow of a doubt that I can and do love Ma as one of my own ... although, she will never be. Such is the quandary of a medical host mom!

It often pains me to know that her biological mom must be even more pained to know her daughter is undergoing all these medical procedures without her. Her mom has been unable to rock her during chemo, hold her tight during blood draws, clean and bandage her port, whisper in her ear during radiation and tell her that it's going to be alright, or snuggle with her at night when she's feeling crappy. That has been my job. A job I know I am honored to do. But, a job that really should be that of her biological mom.

I am saddened that the hospitals in Cote d'Ivoire are ill-equipped to handle Ma's delicate case of retinoblastoma. I am crushed to think if she had access to care earlier on, she may not have lost her left eye. At times, I am just sick to think that her parents were all but forced to make the difficult to decision to send her to the States for a chance at life because they had no other option in front of them. I can't begin to imagine the heartache they must feel on a daily basis to be separated from their daughter who is fighting cancer in another country with another family.

These thoughts surfaced once again this week as I read about "poverty orphans" on Kristen Howerton's blog Rage Against the Minivan. She, and several others, are currently in Ethiopia raising awareness for Help One Now. One of this organization's biggest goals is to care for vulnerable children so they won't become orphans in the first place. Many families want desperately to care for their children, but don't know how or don't have the means. They know if they give their children to an orphanage, they will get an education, regular meals, and basic healthcare. Help One Now provides families with these basic needs, otherwise provided by an orphanage, in order to help keep families together.

Not coincidentally, I also just finished reading Kisses from Katie by Katie Davis, a young woman passionately serving Jesus in Uganda. She shares the heart-wrenching story of fostering to adopt a little girl (1 of 14!) named Jane. She had done her due diligence and gone through the process of trying to locate Jane's family. When no one surfaced, Katie took Jane into her home as one of her own. Years later, to her absolute surprise, Jane's mother showed up and wanted her back. There was nothing that could be done. Jane went to live with her mother, Nancy. Five months later, Jane and Nancy showed up on Katie's doorstep, sick and homeless due to a job-loss, with nowhere to go. Katie took them both into her house and eventually found them a place to live close by.

Katie doesn't share or perhaps doesn't know what led Nancy to abandon Jane in the first place. However, I wonder if Jane was a "poverty orphan". I wonder if she would have been able to stay with her family had they been provided resources and empowerment like the Help One Now organization provides ... in fact, like Katie Davis now provides to her village and the villages surrounding her in Uganda through Amazima Ministries. Could the heartbreak suffered by all involved been avoided?

I also wonder if there were appropriate medical facilities and resources in Cote d'Ivoire, could Ma have stayed with her own family to receive treatment for cancer rather than spending now over half her short life away from her family? I wonder if it could have been avoided for her parents to miss her first words, her first steps? I wonder if they could have avoided missing 13-months and counting of her hugs, her dancing, her laughter, her smiles, her tears, her joy? I wonder.

*photo compliments of flickr creative commons contributor Marc Louwes

re: update on ma for september

2014-09-09T11:54:00.000-07:00

September 9, 2014

Last night I spent some time mentally preparing for Ma's exam today. It wasn't the procedure itself that bothered me ... we've been through this every month for over a year now ... no, it was the weight of the outcome that bothered me. There was the best case scenario: her cancer is still in remission. Then, there was the worst case: cancer has recurred; her eye must be removed. There was really no foreseen in between.

I ran through the different scenarios, and rehearsed my reaction to each one of them. I've learned it's better to be prepared. I’ve also learned to cope by hoping for the best, but expecting the worst. I know that sounds pessimistic. I like to think of it as being realistic.

I'm so happy to report that I was able to use the rehearsed reaction to the best case scenario today. Ma's exam showed that her eye cancer is still in remission!! This goes without saying, but this is such great news! Even her very pragmatic (that's why we get along) doctor seemed optimistic, and said he thinks we may have turned the corner.

Now, notice the words "think" and "may" in that previous sentence. Since Ma has had all (every single one!) of the risk factors that indicates the most severe case of retinoblastoma, it also means she is at highest risk of recurrence over the next year. With that said, time in on our side. We are now two months post-radiation. The further away from treatment that we get, the less likely it is that her cancer will return.

These next couple of months are crucial, so I will still be hesitant to say aloud that "Ma's cancer is in remission" for fear that the truth of that statement will float away along with the words in the air. However, that won't stop me from now being hopeful.

Even if her cancer does come back, her doctor (unlike a couple of the other doctors) is not ready to give up yet. He said if I'd up for it, we'd try intra-arterial chemotherapy again. If you recall, this was the procedure they tried in May, but had to abort because they were unable to travel through her narrow ophthalmic artery. As she continues to grow, so do her arteries, so they may be able to try again with success. I'm thrilled that Ma's doctor, like me, is not ready to give up after fighting for this eye for so long. Hopefully it won't ever have to come to this. However, I'm happy that there is now an option between "best case" and "worst case" if we need it.

And now, I leave you to go revel in the best news we've had in over a year concerning Ma's eyes!!

- - - - - - - - - -

September is National Childhood Cancer Awareness month. Last winter while undergoing chemotherapy, Ma received a JoyJar filled with goodies to help her though her hospital visit. This was made possible through the Jessie Rees Foundation.

Jessie Rees was a beautiful, athletic, smart and compassionate 12 year old girl who bravely fought two brain tumors (DIPG) for ten months and two days. Her fight started on March 3, 2011, and ended on January 5, 2012, when she earned her angel wings. The mission of the Jessie Rees Foundation is to ensure every child fighting cancer has the support and resources to Never Ever Give Up.

I love this: NEGU. Never Ever Give Up.

re: oncology angst

2014-09-02T18:19:00.000-07:00

September 2, 2014

Only know you've been high when you're feeling low.*

These were the first words floating out of the radio in my vehicle when I started it in the hospital parking garage today. Then, I started to cry.

I was feeling high. I would have been hesitant to admit it, but I was feeling hopeful. After all, Ma got good news three weeks ago during her eye exam under anesthesia: the tumor is regressing and nothing looks suspicious. On top of that, after going all but blind after radiation, her eyesight returned to nearly the state it was pre-radiation. I don't know if it was a miracle or just the blood in her eye subsiding. In any case, I was happy that after a year and countless trips to the hospital that things were finally looking up for our little cancer patient.

Now, before I continue, Ma is fine. Her blood counts were normal and by an outward physical exam, she looks great. She has another exam under anesthesia a week from today, which will hopefully confirm the previous findings that the cancer in her eye is in remission.

Despite all that good news, it still only took one question from her oncologist today to knock me down. I guess I didn't realize how fragile my 'high' was.

What made you decide to go ahead with radiation? - he asked.

Background info: Ma's oncologist was 1 out of the 5 doctors I questioned about radiation who did not think that it was the best option. He recommended to remove her eye, and therefore the cancer, giving her the best chance of a long life. We decided to go ahead with radiation in hopes of saving her eye to give her the best chance of a good and (hopefully) long life in a developing country where services for the blind are non-existent.

The insecurities of the "radiation decision" flooded back to me with a vengeance, and I started backpedaling. I felt cornered and like I needed to defend our decision. Does he not know that this decision tortured me terribly over the two weeks we were forced to make it? It was a decision between two horrible options: one leaving her blind, the other potentially saving her eye and eyesight and freeing it from cancer, but increasing her risk of secondary cancers from 25 to 50%. Does he not know that once the decision was made, I was still tortured by it every day for each of the 20 days of radiation? Then again when her eyesight plummeted 3 weeks post-radiaiton? I wish he knew that I will always question that decision and whether or not we made the right one ... if there was a right one.

On my way out of the hospital today, I felt like he had burst my ever-so-thin-as-to-be-transparent bubble. Then, I just got mad. While he is very good at what he does, and is the most knowledgable in the department about retinoblastoma, I needed someone to blame. I needed someone to condemn for this brittle road I walk on while caring for a cancer patient ... one that can break into a million pieces with just a simple question.

So, today I will choose to stay mad at him. Tomorrow, perhaps, I will remember how he offered to arrange to get her vaccinated, how he sat for longer than he probably should have today to discuss different scenarios and how each one affects Ma's timeline leading to her return home, and how he has had her back all along. Maybe tomorrow, I will begin to climb again back up to the height where we deserve to stand after the long fight we've had thus far, because we are beating this! It may not be as high as we'd like, or as stable as we'd like yet, but we'll get there.

*"Let her go" by Passenger

re: cancer binds a friendship

2014-09-01T11:31:00.001-07:00

September 1, 2014

I wrote this a few days ago after spending some time with a friend:

I had the privilege of spending the past few late evenings in the hospital with a friend of mine whose father is in the ICU. I say 'privilege' because I'm not sure I had actually earned the right as a friend to enter into such a personal, emotional, and sacred time with her. I mean, she would consider me a friend and all. Probably even a good friend. But not the type of 'good' friend that comes to mind when most people think of a 'good' friend. I've known her for less than a year, and I certainly haven't put in the hours with her that I should have. I don't even know her birthday (which I found out is today!), her favorite food, where she was born, or what type of music she listens to. However, despite that, she let me into her world at a very vulnerable time ... all because of one little thing we have in common ... one small thing that has the ability to bond two sometimes unsuspecting people together by virtue of association:

Cancer.

Her dad. My 'daughter'. They even share the same radiation doctor.

The nasty disease that wrecks a body has unwittingly built a friendship. We may not know each others' favorite color, most embarrassing moment, hobby or history. But we share a language that joins us together closer than that seemingly trivial knowledge could ever do. No translation is needed for the language that is spoken amongst the families and/or caretakers of cancer patients. No, I can just put on my F*@& Cancer t-shirt (a gift from her), drive to the hospital and sit in solidarity with her as we watch her father's chest mechanically rise and fall.

He is a strong man. And although I don't know him more than the exchange of a few of sentences, I admire him in his strength, even now as he is being kept alive by machines and meds. This is the same strength that his daughter now has to muster to make a decision I wish she didn't have to make.

He shouldn't be here. And I'm mad that she is forced to say things like, 'I want what's best for him', or, 'I want his pain to end'. No, he definitely shouldn't even be here! In fact, he was at work a few days ago. X-rays now indicate pneumonia, but there's really no way of telling with an untrained eye where cancer ends and where pneumonia begins. Beyond that, his cancer is aggressive and has already spread to his bones. I'm frustrated that all I can do is "mourn with those who mourn".

- - - - - - - - - -

Cancer may spread quickly, but despite that ... and especially to spite that ... our friendship has spread even faster to keep up the pace.

My friend's father passed away late Friday night surrounded by those who loved him most. My tribute to him is to try and be the best friend I can possibly be to his lovely daughter.

I love you, M.

*photo found here, flickr cc

re: pray for peace, then work for it with all your might

2014-08-21T12:56:00.002-07:00

This blog entry started forming in my head a couple of weeks ago, and I finally wrote it yesterday. However, I've been hesitant to publish it due to having a complete lack of authority on the subject whatsoever. First off, I am white, which means I cannot fully grasp the racial tension in Ferguson, MO, that has triggered rage and sparked calls for justice. And while I am a Christian, I'm failing to properly empathize with the ethnic cleansing and genocide that is occurring by ISIS in Iraq because I live in a country where the worst one can say to me about being a Christian is "close-minded" and or "dumb". Furthermore, while Judaism is a part of my Christian heritage, I do not pretend to know the complete history behind the religiously divided groups in Gaza. So I decided to keep this entry in draft form.

This morning, I was scrolling though Facebook when a photo featured in a blog entry on BonBon Break caught my attention. It is of a sweet friend of ours holding her son in her arms and holding another in her belly, along side a friend of hers in the same 'predicament'. My friend is white. Her friend is black. The blog entry is a letter entitled, "Dear White Mom", written by her friend, Keesha, in response to the terror in Ferguson, MO. Please read it here.

After reading her letter, I decided that maybe my thoughts weren't so far off after all, so I revisited the blog entry. While I am perhaps worlds away, or at least states away ... maybe different in skin color, religion, ethnicity, etc., ... it does not give me an out, an excuse not to do something. And while I pray for peace, I don't ever want to let prayer be an excuse not to act. So here are some thoughts on what we might be able to do to combat and/or prevent prejudice, oppression and violence within our own sphere of existence.

1. Mother Teresa said, "Peace and war begin at home. If we truly want peace in the world, let us begin by loving one another in our own families." Home - it's a good place to start to plant the seeds of knowledge, peace and love. Keesha, in her letter to white moms that I mentioned earlier, had this to say: "Talk to your family about what their black and brown friends might experience that they don't have to. Teach you family to empathize with, and give the benefit of the doubt to, people whose world and experience is far outside their own." She tells us to teach our kids that racism is not only history but here and now, that the news tends to be unbalanced and unfair to African Americans, and to speak up to anyone we know who might be prejudice or oppressive. We have the greatest influence in and among our own family and close friends. That's where peace should start.

2. Get to know someone different from you - someone with a different political view, religious view, a different sexual orientation, someone who dresses differently or acts differently. Do this with the intent of learning about them, not trying to change them. You might find that while they go about things differently, they hold very similar morals. I truly wish I could find the article I read a few weeks ago that pertains to this. I'll keep looking for it and link to it if I come across it again. It was a powerful article written by a Palestinian father whose daughter was killed by an Israeli bomb several years ago. He now works tirelessly for peace by facilitating meetings between Palestinians and Israelis, two people at a time, so they might get to know each other and see that the other wants just what they want ... peace.

3. Critique your own beliefs as much as you critique those of others. Please go read this "Ask Andrew W.K." blog column. Click here. Go ahead. I'll wait. I love it when I find gems of wisdom in unexpected places. I'm not sure I would have thought that I could be so moved by the words of a heavy metal rocker who was, until I read his words, unbeknownst to me, but there it is! I have become more and more open to truth coming from others unlike me. In doing so, I have enjoyed a newer and more vibrant faith - losing ideals, rules, and patterns that don't matter, that never really mattered - and beginning to focus on what does matter. As Andrew W.K. says to the "Son of a Right-Winger", "Have the strength to doubt and question what you believe as easily as you're so quick to doubt his beliefs. Live with a truly open mind -- the kind of open mind that even questions the idea of an open mind. Don't feel the need to always pick a side. And if you do pick a side, pick the side of love."

4. When you encounter opposition, and you will, challenge yourself to always follow the Golden Rule: treat others as you want to be treated. Perhaps the opposing person has only known opposition, not love.

5. See and know others as humans. Andrew W.K. mentions this. It is also discussed in an inspiring way by Preemptive Love Coalition director, Jeremy Courtney, in "Behind #WeAreN: 'If One Group is Marked, We're All Marked'". This article can be found here. Iraqi Muslims are coming together to support Iraqi Christians who are now being hunted and killed by ISIS. They are saying, "Doctrine aside, we see your humanity. You should not be marked for extermination. If they’ve marked you, then we will mark ourselves. If they come for you, they can come for us, as well." WOW! Just, wow!

- - - - - - - - - - - -

And just when I was about to award myself about a B- for my own effort on the above goals, I thought about my reaction as I read Keesha's letter today: Boy, I am sure glad my kids are white ... and they don't have to deal with all that. Dodged a (sometimes literal) bullet there!

Fail. I am no more innocent of injustice than anyone else if I am only interested in saving my own hide.

Further along in Jeremy Courtney's #WeAreN article he says this: "We meant #WeAreN to be a lighthouse that guided us back to the shores of humanity by recognizing all of the peoples of Iraq who have been targeted by the murderous Islamic State. Instead, through avatars and news articles that validated the suffering of our group, often to the exclusion of others, #WeAreN has become a siren, calling our ship off course and into the rocks of a dehumanizing Christian tribalism."

You may put whatever descriptors you'd like in place of "peoples of Iraq", or "Islamic State" or "Christian". For me, I left them all in ... and was particularly challenged by his next statement: "When we find tragedy in the suffering of some and gloss over the suffering of another, we have strayed far from The Way of Jesus."

re: a year with ma

2014-08-19T10:17:00.001-07:00

Ma, a year ago today

August 19, 2014

It's been a year since Ma joined our family. I took a little bit of time yesterday to reflect on the year, and as I was doing so, I started to wonder how different the year would have been if I had deleted the email that showed up in my inbox last August ... the email with the urgent ask for a host family for a baby from Ivory Coast, Africa, while she received treatment for retinoblastoma.

What if I would have said "no"?

Would this last year been easier? Most likely. Less stressful? Less demanding? Less traumatizing? Yes. Yes. And most definitely yes. Would I have less grey hair creeping through the brown? Would I have exercised more? Would my house be more organized and cleaner? I'd like to think so. Would I have had more time and energy to spend with my husband, my owns kids, other family and friends? Yes. Would we have had the luxury to venture out of "survival mode" more often? Yes. Would we have been able to live more comfortably and securely? Most likely.

Comfort and security. It is the essence of the American Dream, is it not? To live comfortably in happiness and health? To live in financial and relational security and enjoy personal safety?

In reality, we had achieved that as a family. A year ago, Dave and I were nearing 16 years of a loving and contented marriage. Dave had a secure job that allowed me to stay home with our two beautiful, healthy, active girls. After having moved home on average every two years of our married life, we had settled into what I would consider my dream home in my dream neighborhood, in a community we were growing to love and finally wanting call home for an extended period of time. We even had the proverbial white picket fence! Life was good. And although I was happy and never really took our "good life" for granted, I began to grow restless.

I started to have a sneaky suspicion that there was more to life than comfort and security. This thought was challenging me last summer when I received the email about Ma. I initially went through every reason to delete the email and never give it another thought. There were several other recipients. Probably some with more energy (i.e. younger) or with more time. Certainly some with more willingness. And probably some with more medical experience. Heck, any medical experience would have been more than what I had! Besides, I wasn't even sure if we still had our crib, or carseat, or highchair.

But *something* made me hesitate. *Something* blocked my finger from finding the delete button on the keyboard.

I read the email again ... and then again. As I did, my heart began to soften. Next thing you know, we were driving to Ohio to pick up a 13-month-old little girl who had already lost one eye to cancer. Our assignment was to love her, care for her, and bring her to her appointments so the doctors could save her remaining eye.

Anyone knows you can do anything for a short period of time, right? Well, a few months has turned into a year with no definite end in sight. A few trips to the hospital has turned into nearly 75 trips with several more on the horizon. And I have learned that saying "yes" to this little girl meant saying "no" to a lot of things that held my comfort and security in check.

I'd like to say I accepted this new challenge with grace and dignity, but in reality, sometimes it was quite the opposite. Saying "yes" to Ma has been quite a learning experience that has ranged from hard to terrifying. However, if I had said "no" to her, I would have missed out on a lot of things. I would have missed her smile, her laughter and her hugs, which are epic and you should be jealous. I would not have had the privilege of hearing her learn to talk or seeing her learn to walk. I would have missed talking to parents of seriously or terminally ill children at the hospital, which has led me to a new appreciation for the health of my own children. I would not have had my heart stretched and pulled in directions I never knew possible. I wouldn't have been so enlightened on the fact that there's more to life than my own comfort and security. Finally, I probably wouldn't have realized that there is a potential for an exhilarating adventure behind every "yes".

- - - - - - - - - - - -

P.S. #1. I would like to give credit where credit is due: Dave recommended a book to me a few months ago. He had read a blurb about it in USA Today and thought I'd identify with it. He was right! Shelene Bryan, in Love, Skip, Jump, helped me organize my ever evolving thoughts about life. She's like this crazy "yes"-adrenaline-junky. She's had some amazing experiences all because she's been willing to to say yes to God and His plan for her life. Or, in non-religous terms, she has been willing to love others with an unselfish love. She is inspiring. Ms. Bryan is the founder of Skip1.org, a charity that provides food and water to children in need around the world. The idea is very simple: skip a car wash, manicure, lunch out, Starbucks, etc., and instead donate the money to those in need. It's an easy "yes" to do!

P.S. #2. Quick update on Ma: After noticing a big reduction in her eyesight a couple of weeks ago, we moved up Ma's eye exam from 9/11 to 8/12. Results: I am pleased to say that her cancer is in remission!!!! Also, since that appointment, we've noticed an improvement in her vision. Such good news all around! We are so thankful!

question re: ma - how has hosting ma affected your biological children?

2014-07-29T14:32:00.000-07:00

"Sisters"

Our family has been asked many questions over the last 11 months concerning Ma, our borrowed baby from Ivory Coast, Africa. Here is a link to a brief explanation of who she is and why she's with us. I've been taking on the task of answering some of the more popular questions people have asked ... because, after all, it has been an interesting journey. Today, I've decided to tackle a topic that has occupied my mind for months, and has been ever so present in my thoughts over the summer as this particular stay-at-home mom has used a babysitter more over the last few weeks than I have over the last few years put together.

Question: How has this experience affected your biological children?

"What's next for Ma?", is the question I just got from our 10-year-old, Bizzy. She must have overheard me earlier today talking on the phone to someone from the hospital about scheduling Ma's follow-up appointment. We haven't talked much about cancer, hospital visits, treatments, etc., over the last couple of weeks. It's been a nice reprieve after Ma's 20 rounds of radiation, which was preceded by stressful decisions and failed attempts to rid her eye of the stubborn cancer. I told Bizzy that Ma will have another exam in September to see if radiation worked.

If it worked? I thought this was the last thing they could try?

It is - I said, knowing where this was going.

What if it didn't work? - she continued.

They would have to remove her eye to avoid the spread of cancer to other parts of her body.

Wait! - (wheels turning) - that would make her blind!?! You mean to tell me that if this treatment didn't work, that when she goes back to her parents, back to Africa, her only vision of them will be what she had before she came to us?

- - - - - - - - - - - -

Loss. Pain. Suffering. Stress. Even Death.

The premature exposure of our children to these things was a fear of mine a year ago, and was the main negative point as we were discussing the pros and cons of hosting Ma. As a parent, you always want to shelter your kids from these facts of life, right? However, they are just that - facts. Everyone will face them at some point. Some may argue that it's better to wait (if possible) for children to be exposed to them until they are more mature. You may be right. However, as I've watched our kids grow in empathy over this past year, I might now argue against that logic.

Death was all around me as early as I can remember. When your dad is a funeral director and you lived above his place of work, the exposure was unavoidable. I've always been a relatively observant soul, a practiced eavesdropper of life, if you will. The tears of suffering, the laughters of remembrance, the hugs of comfort, the lines of worry, the sighs of relief were never lost on me as I would quietly make my way in and out of the funeral home ... but, all the while, realizing the peculiar space I occupied ... the physical proximity of me to those grieving versus the distance of our current experiences.

It was in that peculiar space where I was determined to keep our girls ... physically close to Ma to offer hugs, love and entertainment, but able to carry on about their daily lives without sacrifice, or even much awareness, of Ma's battle with cancer. Admittedly, this scenario didn't last long, and was all but laughed off by a well-meaning mother-of-a-cancer-patient I met during one of Ma's first chemo infusions. She warned me that life could not go on as usual for our family ... not when you have a cancer patient in the house ... even if, maybe especially if, the cancer patient isn't one of your own.

While I hated to admit it, she was right.

We dealt with some jealousy. Our 5-year-old, Pippa, fell victim to much of this. She was in her last year of part-time preschool and had to share me. Both the girls felt the time crunch at home while I spent a tremendous amount of time comforting an uncomfortable Ma. We also dealt with some minor resentment when we had to say 'no' to activities because of Ma. But all in all, it has been a positive experience. And I believe it began to show us all, that the world does not revolve around each of our respective selves.

The girls began to step up in ways I never dreamed possible. For instance, if it weren't for Bizzy, I'm pretty sure none of us would have gotten any sleep for the first week we had Ma. Ma took to Bizzy right away and was comforted by her. Bizzy rocked her sleep several times during that first week while I sat stunned and tearful at Bizzy's maturity. In addition, Ma was the inspiration for Bizzy's class at school to make no-sew blankets as a Valentine's Day project for the hematology/oncology infusion unit at the children's hospital. Also, Bizzy's interest in cancer led her to do a special interest fair project on 'Cancer with Ma', and her interest in Ma's home country and continent led to a big writing assignment centered around the lack of clean water resources in Africa.

Pippa, believe it or not, was my linchpin at the hospital. She tagged along with Ma and I on many, many visits. She always was a good sport, always had a positive attitude and always provided a much-needed distraction. And her skepticism about Ma from taking her role as youngest-in-the-family has been overshadowed by her fierce loyalty. She now introduces Ma as her "little sister".

- - - - - - - - - - - -

It's been a year since we were writing the list of pros and cons of becoming a host family for Ma. I can now reflect and provide an answer to some of the big questions that came into play before we even applied: How much would this interfere with our children's lives? Would they be traumatized by a sick child? Would they have to make sacrifices? The answers are some, no, and yes, respectively. And I have to say, that those are acceptable answers in my eyes.

re: 5 more weeks

2014-07-26T13:23:00.000-07:00

5-year-old Pippa, summer 2014

July 26, 2014

5 more weeks. 5 more weeks until school begins.

Was it just earlier this week I was wishing for less time than that? While I listened to her whine and fight with her older sister, didn't I wonder if I had the patience and endurance to last the rest of the summer? Wasn't I longing for the few moments of freedom that school provides to a stay-at-home mom?

She rides her bike in circles around the table on the back patio. Her dad is currently in the basement gathering tools from the toolbox to remove her training wheels. I watch her go round and round from the kitchen window. I start to feel a little dizzy.

5 ... 4 ... 3 ... 2 ... 1 ...

5-year-old Bizzy, summer 2009

I suppose it was about this same time 5 years ago that we were teaching our eldest daughter to ride sans training wheels. She too was 5-years-old at the time and was also preparing for Kindergarten in the Fall ... all the while her newborn baby sister was sleeping in her stroller, blissfully unaware. Both of their worlds were so small!

1 ... 2 ... 3 ... 4 ... 5 ...

Fast-forward 5 years and the scene is beginning to replay in front of my eyes. However, the newborn is now 5, the 5-year-old is now 10, wise for her years. As I watched and listened out the kitchen window, my eldest gives sweet pointers to her sister on riding a bike with 2 wheels rather than 4.

The 5-year-old pauses to look up and watch a bird fly over her head. I wonder if she knows that she is that bird in 5 weeks ... that the first morning of Kindergarten is the first of many days she will use her young, inexperienced wings to fly away from the nest.

She will return, of course. She won't be ready for long flights for some time. However, she will fly. And her world will expand beyond her mom, dad, sister, close family and family friends to include teachers and neighborhood friends as well. And there's no way to count back to the day when she cracked her shell, came into the world and began to grow into the fun-loving 5-year-old she is today.

~~5 ... 4 ... 3 ... 2 ... 1 ...~~

5 more weeks. 5 more weeks until school begins.

Not 5 more weeks to my freedom, but to hers. 5 more weeks until I'm no longer a mom to a preschooler. I hope, as I did with my eldest daughter, that her soon-to-be-expanded world loves her even a fraction of how much I love her.

re: update on ma for july

2014-07-22T14:24:00.000-07:00

Ma, happily eating her birthday cake.

July 22, 2014

Greetings all!

I just wanted to give you a brief update on Ma. I know she wrote you (here) about a week and a half ago on her birthday. Unfortunately, since she's just 2 years old, she's not big on details.

"So what's next?", is the big question we're getting.

The pat answer to most questions right now is this: we don't know. Ma hasn't been scheduled for a follow-up exam yet. If I haven't heard from her ophthalmologist by the end of the week, I plan to give him a call. In the meantime, we're taking advantage of a much-needed breather.

Ma is doing well. She had some eye-swelling from radiation, but much of that has subsided. The most noticeable short-term side-effect of radiation is that her eye is 'burned'. She has lost most of her eyelashes and some of her eyebrow. In addition, the skin around her eye and on her eyelid have been burned and irritated. It's like a bad sunburn. We are treating it with antibiotic ointment, and it's getting better by the day.

Radiation treatment is 80-85% effective against retinoblastoma, so we are assuming that it worked, and that the cancer in her right eye is gone. I asked her radiation doc what would happen if (on the off chance) radiation didn't work. (I had heard that in some cases, they would schedule more radiation.) He said the next step would be surgery ... the removal of her eye ... the result: blindness.

Gut punch, right?

So ... like I said, we are working under the assumption that the treatment worked. If so, our best guess is that she will need monthly exams for at least 6 months to ensure that the cancer does not return. (Retinoblastoma is known for being quite troublesome until the child is about 5 years old). She may be able to go back for a visit to her family by early 2015 before returning to us for more follow-up. So far, from what we know, she will be unable to obtain the needed follow-up care in Ivory Coast ... even if it were to be funded. It's simply not available.

We'll keep you posted as soon as we have her follow-up exam. The best guess right now will be sometime in August. It seems that if it were discovered that the radiation treatment ... her last option ... didn't work, she would lose her eye ... the eye that we have been working so hard to save for a year now. It would be quite a blow, as you can imagine. If that were to happen (God forbid) it is unclear how the timeframe would be altered.

As always, thank you for your continued prayers and concern. Sorry if I'm a bit uninformed in my answers. I simply either don't know ... or I just don't want to think about it.

I've been blown away by the support and interest in Ma. I just love that last week during a swim meet for our older daughters that we had no less than 10 young girls peppering us with questions about Ma. She has touched many lives in Ann Arbor ... and beyond!

re: a letter from ma

2014-07-11T06:04:00.002-07:00

July 11, 2014

Dear Readers,

Hi. I'm Ma. Pronounced like the month of May. Actually, it's not. It's Ma Korotoum Sylla. However, I'm pretty sure you'd never learn to pronounce it correctly, so you can just call me Ma. I turn two today. I think that's why Mom turned the writing reins over to me. I'm glad to have your attention, because I'm going to write my own update for a change.

Like I said, my birthday is today and I'm two. And we have a lot to celebrate ... because yesterday was also my 20th and last radiation treatment!! I'm not really sure why it took these people so many tries. I mean, honestly! They say they're treating something in my eye known as cancer. I'm not sure what cancer is. All I know is that it means I have spent a lot of time at the hoppital this past year. 70 different trips to be exact. Now, don't think I'm complaining. The hoppital isn't that bad most of the time. I play with toys, blow bubbles, paint, get countless stickers and there's an endless supply of cwackers and chockit pudding. These past few weeks have been especially good since I've been recovering in the adult unit after radiation rather than at the children's hoppital. Some of the nurses, especially the ones with a surprised look on their faces, aren't quite sure what to make of me. My Mom says it's because I'm a little person in a big person world. All I know is if I scream loud enough, they'll do anything I want!!

I've tried that same tactic at home, but it doesn't work out all that well. Especially with Mom. Oh, she's nice and all, and gives me food, hugs and kisses, but she also doesn't give me special treatment when I play the cancer card. She says it's the best thing for me. When I'm not so sure about that I go to Dad. Now he, on the other hand, is a sucker! I don't know why I didn't like him for the first few months!?! All I have to do is smile at him, and he just melts. (Maniacal laugh!!) My sisters are both pretty cool too. Pippa-woo is fun to play with but occasionally takes my toys. No worries. If I stay here much longer, I'll be as big as she is and will be able to take her down when needed. Bizzy-boo is downright awesome. She's had my back from day one and has always been my champion. She was the only one who knew how to comfort me when I first joined this family.

Family. "Family", like "cancer", is also a concept I'm trying hard to understand. I think the two must be related ... because neither one is easy to shake. You see, I have a vague memory of another family with whom I spent my first year of life. I remember that they looked and smelled more like me than this current family. The memory of them comes back when I see people that have darker skin like me ... like at the 4th of July parade when I locked eyes with a girl a little older than me. We both just knew there was some connection between us! She's from Africa. I'm told that I am too, and that some day, when I'm well and that this cancer thing is gone, I will go back to a different family, where apparently I have another Mom and Dad and maybe even sisters or brothers that love me dearly and look forward to my return. I'm a little apprehensive about another transition. The first, which took place a year ago today, was pretty awful. I cried and cried until I couldn't cry any more when they put me on what's known as a plane. My white Mom cries too just at the thought of it, so she seems to understand my concern. However, she also says it's for the best and that my real home is with my other Mom and Dad in Ivory Coast, Africa. She also says that the weather there is much nicer than it is here in Michigan. After living through whatever purgatory you guys call "winter", I may just be on board with this Africa thing!

My Mom is telling me to wrap it up, so let me get down to business and give you the update that I promised. The short answer is that I'm good. The docs are amazed at my overall progress. They use words like "resilient", "strong" and "tough". But, they just keep talking about that pesky cancer thing in my eye. Apparently, it's been pretty "persistent". However, the rad doc said this week that he's confident that the radiation treatment worked. After taking them 20 times to get it right, it better! We'll know more after an exam under anasneezia with my eye guy. That hasn't been scheduled yet, but should be soon. From what I can tell, we're really hoping and praying that radiation worked. If it didn't, my Mom says I will lose my second eye. While I love having one fake eye (and taking it out when my Mom least expects it), I don't think I want a second one. I'm told that having two fake eyes will mean I can't see at all. The world is too bright and colorful to think of that as an option, am I right?!?

Hugs and kisses to all,

re: when the hands and feet of God stink and hurt, respectively

2014-06-25T13:02:00.002-07:00

I wonder what people really mean when they say, "I love babies". I have a feeling that most people who say they love babies mean they love and like babies. I love babies too. But I don't really like them a good chunk of the time. They're cute and all ... I mean after they grow out of the newborn-alien-crossed-with-Chewbacca look. But let's be real, they're loud and needy and messy and they smell gross 62.89% of the time. So one might be tempted to ask at this point why we decided to bring our "borrowed baby" Ma into our home 10 months ago. There are times I wonder that myself. For instance, two days ago. Let me explain ...

Ma has entered a fun new phase where she takes off her diaper when she's in her crib for nap time or bedtime. Two days ago during nap time, the diaper she removed was poopy. Now, we all know that poop comes in all different consistencies. The consistency of Ma's that day was well suited for finger-painting. Perhaps Ma will mature into a famous artist one day and I will look back on this day with fondness at being able to witness her very first masterpiece. However, I wasn't feeling super fond of her workmanship that day.

Even her cuteness couldn't muster any positivity from me. As an aside, did you know that Austrian scientist Konrad Lorenz proposed and studied a concept of baby cuteness known as Kinderschema, or baby schema? Apparently, baby schema triggers a positive effect on humans and makes them want to care for the baby. It's a human survival mechanism. Perhaps Ma has outgrown some of her baby schema as she's entered toddlerhood, because no amount of cuteness was motivating me to clean her up, let alone the mess she had made.

I must interject here that this isn't the first time something like this has happened. Going through chemo and anesthesia several times has messed with Ma's poop-processing-procedures (technical term) significantly making her posterior subject to activities ranging from severe constipation to explosiveness beyond your wildest imagination. This episode was particularly bad because she happened to be taking a nap in the Pack n' Play, not in the crib with a plastic-covered mattress.

To rid of house of the overwhelming stench as quickly as possible, I threw all thing poopy out the back door. Well, all except for Ma. (I'm not that heartless, people!) I gave her a quick bath and plopped her in her highchair with some snacks, then went outside to survey the mess. To make things worse, it had started to rain.

I wasn't really sure what to do. I could get on Pinterest, I thought, and search for ways to clean a urine-soaked, poop-fingerpainted Pack n' Play. I'm sure several clever suggestions would pop up. But I dare not, for every time I get on Pinterest I am reminded that I'm a failure at life ... that my own children will most definitely get cancer too because I've fed them GMO, processed, nitrite-laden food for several meals this week already ... that they most definitely will not get into college because they are not visiting 101 of the must-visit educational sites across the world, they are not reading 521 of the must-read books for children, and they are not spending hours daily on their summer workbooks. Besides this, I will learn that all my skin will most definitely slough off at age 40 (this year!) because I haven't moisturized and exfoliated properly since age 15. And don't get me started on what I'm doing wrong with my hair! Finally, I will learn that my life is not complete until the clothes in my closet are color-coded, the grout in the shower is scrubbed cleaned weekly with an Oral B toothbrush and a very 'green' mixture of baking soda and weed, and that my fridge and pantry are alphabetically organized (which is actually impossible as I write now since our fridge/freezer is still quite empty after two weeks of being broken).

All this was going through my head as I was standing in the rain getting soaked. I then remembered that Ma was inside in her highchair eating snacks. Great! Just add that to the list of failed things - "child chokes on goldfish while 'fake' mom is standing outside paralyzed in the rain staring at a bunch of poopy stuff". I went inside to check on her. She was fine and happy, but had unwrapped the bandage around her PIC line and was about to take a tug at it. I got that pit in my stomach (you know the one) and my knees went a little weak. As I darted across the kitchen to stop her (rather gracefully), I knocked over a dining room chair and stubbed my toe. REALLY!?!?! It's time like these - when your hands stink of feces and your feet are throbbing - that I wish God had chosen somebody else's appendages to do His work!

Christ has no body now on earth but yours; yours are the only hands with which He can do His work. Yours are the only feet with which He can go about the world; yours are the only eyes through which His compassion can shine forth upon a troubled world. Christ has no body on earth but yours.

This is a prayer of St. Teresa of Avila. It might be an ironic coincidence that she is the patron saint of persons who suffer from headaches. In any case, I do really love this prayer, and it serves as a good reminder of the work that we are doing as a family to care for Ma. Over the last 10 months, we have had several people indicate that our family are the "hands and feet of God" as we care for Ma. It sounds a bit presumptuous to me at times to contemplate it ... and I feel unworthy at times to consider it. However, it also gives me comfort, stamina, humbleness and honor to think that the work we are doing as a family is making a difference in Ma's life, and in her family's life, all for the glory of God.

So, these hands will continue to clean poopy diapers and fix meals and give hugs during hospital procedures. These feet will continue to run to Ma when she looks like she's going to topple and they will continue to pace the hospital halls. All the while I feel comfort in knowing that in doing so, I am giving acknowledgement and honor to God ... even when ... maybe especially when ... the task seems overwhelmingly dishonorable.

re: sad? stressed? paint. plant.

2014-06-12T05:55:00.000-07:00

Revelation 21:5

It has become abundantly clear that whenever I'm sad or stressed, I paint or plant something. It all began at the end of last summer when we had to say goodbye to our beloved 15-year-old golden retriever, Oliver. I planted what is currently known as the Oliver Memorial Perennial Garden (OMPG) that surrounds the perimeter of our yard. The habit continued over the winter as we dealt with the ups and downs of cancer with Ma - I painted 2 bedrooms and 1 bathroom. This spring, when we found out Ma's cancer had returned after only a month and a half reprieve, I painted her room. When the ensuing treatment failed, I planted a bunch of annuals. Finally, after talking with no less than 4 nurses and 1 doctor yesterday about Ma's procedure today, I went and bought some vegetables to plant. I know, I'm terribly late on planting a vegetable garden, but I don't care. It had to be done.

Sadness is exhausting. Painting makes things fresh. Stress is draining. Planting gives new life.

I'm beginning to think that this might be an expensive way to cope. But I'm guessing it's cheaper than therapy, right?!?

Ma begins radiation today at the University of Michigan Hospital Radiation/Oncology Center. She is scheduled for 20 rounds - every weekday (except July 4th) from June 12th until July 10th. Though not a painful procedure, it will leave its mark for life. For that reason, I feel quite sobered by it. That said, if Ma were my own child, I would chose to fight this last fight to save her eye as well.

I have been emailing any and all information about the final decision to choose radiation over enucleation along to Ma's parents via the normal channels - to the head of the organization through which Ma came, who sends it along to the liaison in Ivory Coast, who translates and shares the information whenever her parents are able to make their way to his house to retrieve it. I've done nothing short of beg for her parents' input and direction, but per the norm, they have deferred to the American doctors' best judgement and have left us with what I can only assume is a silent nod of approval.

I have struggled all along with not being able to communicate with Ma's parents. I have no clear answer as to why it's set up this way. It's just the way it is. I've often wondered if her parents are getting the weekly emails we send concerning their little girl. One-way communication has even made me wonder, without any justification whatsoever, if they even care. Of course they care! I remind myself. They sent their child thousands of miles away in order to save her life. And I have been assured by several doctors had they not, she wouldn't have made it much longer. However, my mind still wonders ... until yesterday.

I got this message concerning Ma's parents: They are heartsick.

It's amazing what a few words can do to turn on the faucets that are my eyes these days! I am heartbroken that they are heartsick, but (can I say this?) I am also happy to hear something from them! It's the first indication, really, that they exist. That they are eagerly following their daughter's progress. That they are eagerly waiting for the day when she returns home cancer-free. This has given me renewed endurance for this next phase ... a phase I was all but dreading.

So we move forward today with Ma's radiation treatment. And I'm hoping I won't need them, but I have painting and planting projects in the wings if needed.

Please keep Ma, her family, the doctors and nurses, and our family in you thoughts and prayers over the next month. Thank you!

re: please pray for ma

2014-06-04T13:50:00.001-07:00

June 4, 2014

I'm not sure where to even start. But I decided I needed to process some information while the 'littles' sleep, so here I am ... sorting things out in front of the computer, as usual. I've had Ma at 5 of her 6 appointments this week so far. The biggie is tomorrow morning where she will have a CT scan to visualize the tumor and cancerous seeds in her right eye, as well as make a facial mold which she will wear each time she gets radiation to make sure the beam hits the same exact spot every time.

I still feel quite unsettled about all this, especially after getting varying opinions from different doctors this week. Two of the five doctors said that if she were to remain in the States and had all the opportunities that we have for the blind available to her, they would recommend enucleation (removal of her eye) to give her the best chance of a long, healthy life. However, since staying here is not an option, they reluctantly joined the rest of the team and sided with trying radiation first ... or last, as it may be.

Here are the numbers I learned this week: radiation is 80% effective at ridding her eye of retinoblastoma. It probably goes without saying, but enucleation is 100% effective. Radiation will most likely decrease her eyesight ever further, but still retain some. Alternatively, she would be blind with enucleation. Radiation will increase her chances of secondary cancers from the current 25%, or 1 in 4, to 50%, or 1 in 2.

Let that sink in as I have over the last 3 days. What would you do?

What would you do not knowing what Ma will have available to her when she returns home? If we move forward with radiation, do her parents have the access to medical care where Ma can be monitored her whole life for secondary cancers? I worry that a secondary cancer will not be detected until it's too late to treat.

If we instead move forward with enucleation, do her parents have the ability to provide for a blind child? And as she matures, what then? My husband shared a mental picture of what he saw on a trip to Kenya that he took with his parents nearly 30 years ago: the blind and lame, begging for money and food, on the streets lining the market in Nairobi. I shutter every time I think about it. Surely things have changed since then? Surely things are different in Ivory Coast? Right?

And although Ma, in her short life-time, has been with us nearly as long as she has been with her parents, and we technically have the right to sign for her care (given to us via a sheet of paper written by her legal guardian, the head of the organization through which she came), we still feel like impostors and not the least bit qualified to make such decisions. I know the ocularist today was just trying to be nice, but he suggested for us not to take on this decision as it may haunt us in the future.

How do you make this decision?

- - - - - - - - - - - -

Here's where I might get a little 'churchy' for some, so bear with me.

I'm a little embarrassed to say that I'm pretty sure we wouldn't have taken Ma into our home had it not been for our faith. I'd like to think that I'm a decent person aside from God's work in my life, but it's just not true. I'm pretty selfish, and I like to live comfortably. And even if we had taken her in on our own accord, our selfishness would have eventually gotten the best of us, and we would have given up long ago, passed her onto someone else, and settled back into our comfortable lives. The thought even crossed our minds during a particularly hard time this winter! So, if it is our faith that got us into this situation ... a situation that has rocked our very world to its core ... then faith should carry us through, right?

We follow the teachings of a guy who lived about 2,000 years ago and changed the faced of the earth. You may have heard of Him. His name is Jesus. Many people have done or said some things in His name that represent Him in a poor way. And sometimes, in a downright disgusting way. We hope, like many, many more other good people, that what we say and do does the opposite, although sometimes we fail at that as well. Jesus says to care for the fatherless, the widows, the sick and the oppressed - so we are trying to do just that. He said it wouldn't be easy - and it hasn't been. He also says that He will be with us always - for that I comforted.

I am currently holding tight to this:

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. - Matthew 6:34 (MSG)

So ... we move forward and hope and pray that Ma is among the 80% who is cured from retinoblastoma by radiation, and she is the 1 of 2 people who never is plagued by cancer again, and she is a happy, healthy little girl who turns into a beautiful young lady who ages gracefully into an elderly woman who will inspire others in Ivory Coast by her story of perseverance and hope.

And here's where I do a little shameless pleading, because in the end, we'd like to avoid radiation and enucleation altogether: Please pray for Ma!! Please pray tonight. Please pray that during the CT scan tomorrow, they will see nothing ... no tumor, no cancer whatsoever. She is such a precious little girl with a big, happy personality for whom, I believe, God has big plans! Please share this with anyone who you think might join us in praying for little Ma (pronounced "May"). Please pray for Ma.

question re: ma - prosthetic eye? what?

2014-06-02T13:49:00.002-07:00

Ma's prosthetic eye

The last couple of weeks have been filled with serious conversations, and my last two blog posts have been downers. So, I thought I'd lighten things up by answering another question about Ma that is not so depressing, but interesting. Our family has been asked many questions over the last 9 months concerning Ma, our borrowed baby from Ivory Coast, Africa. Here is a link to a brief explanation of who she is and why she's with us. I've been taking on the task recently of answering some of the more popular questions people have asked ... because, after all, it has been an interesting journey.

This next topic is one that I feel many people want to know more about, but by the looks on their faces, are afraid to ask. Trust me I know the look ... I grew up in a funeral home for goodness sakes! So here it goes:

Question: How does the whole prosthetic eye thing work?

Most of you know that Ma had to have her left eye removed within the first week of arrival in the States because the retinoblastoma in that particular eye was so invasive*. For the enucleation process, the eyeball is removed leaving the surrounding muscle, eyelid and bone intact. To hold the volume created by the loss, an orbital implant is placed in the void. This can either be a spherical cluster of very small acrylic spheres, or one solid acrylic sphere. The first one is better at simulating normal eye movement because it allows the surrounding tissues to better grow in and through the implant and allows for better muscle attachment. However, it also provides void space for cancer cells to hide, so Ma has the second kind. It's basically a like a clear bouncy ball!

Left: Ma with the conformer; Right: Ma with her new prosthetic eye

For the first couple of months after enucleation while her eye socket healed, Ma wore a conformer, a clear plastic lens that fit over the 'bouncy ball' implant. She then started seeing Dr. Gregory Dootz at the Kellogg Eye Center for the making of her prosthetic eye. I won't go into much of the process here. If you're interested, and it is kind of interesting, here's a link to a short, 3 1/2 minute video on the making of an artificial eye shot by National Geographic:

Dr. Dootz is an ocularist, which means he is part engineer, part artist, and he takes great pride in his practice. I had the pleasure of hearing several of the life-enhancing stories of his patients. He was so excited to work with Ma. She was one of two patients he worked overtime for in December to provide eyes before Christmas. He even asked some of his long-time patients to wait until after Christmas for their replacement eyes. They happily obliged once they heard their stories. The other project was to provide eyes for a little girl who was born with none. Her dad was coming home from war by Christmas, so Dr. Dootz was able to provide a pretty awesome gift to this child and her parents!

The care of Ma's prosthetic eye is relatively simple, albeit a little creepy. It needs to be removed (by me!) once a month for cleaning and inspection. Daily eyedrops are provided, but not really needed in a child of the age of Ma because they still cry everyday and therefore provide natural lubrication. Contact with rubbing alcohol can dissolve it or crack it. Acetone will remove the color.

Ma can rotate her eye. It happens every couple of days when she rubs it. I then have to get out the mini-plunger and turn it around so it's not 'looking' cross-eyed.

Ma has also been known to remove the eye herself. The first time was a full 18 hours after she received it! It was during the 'getting-kids-ready-for-school' morning rush hour. Ma was sitting in her highchair snacking on some Cheerios when I turned around and saw that her eye was out and nowhere to be seen. In full-on panic mode, I yelled to our 4-year-old Pippa, who was enjoying her own bowl of cereal, to help me find Ma's eye. She, of course, had no idea what to look for and pointed to a Cheerio on the floor and said, "There it is, mom!", quite pleased with herself!

We eventually found it. And also found it the handful of other times she has removed it. Thankfully! It's a $2,500 charity donation from University of Michigan Hospital.

We now have been known to speak words in our house that I never thought I'd ever have to speak: Please don't take your eye out!

* Currently, it is not possible to receive a complete eye transplant.

re: a fork in the road, or just a pothole?

2014-05-29T11:49:00.001-07:00

May 29, 2014

It has been a week since Ma's doctors had to abort intra-arterial chemo, a procedure we thought would be the last chance of saving Ma's remaining eye. Her doctors made a valiant effort. They tried and tried ... took a break ... tried some more ... called in reinforcements and fresh eyes ... but ultimately, after 4 hours, needed to abort the mission. They were clearly disappointed.

So now, we stand at what I initially thought of as yet another fork in the road in Ma's treatment plan. Following the aborted mission, her ophthalmologist said we were left with two choices: radiation or enucleation (removal of her eye). Radiation hadn't been mentioned before as an option because they like to avoid it with genetic retinoblastoma patients who are already prone to secondary cancers as they age. Radiation will further increase that risk, especially around her eye. It also can cause mild facial deformation in the area surrounding the eye, in addition to cataracts. The effect of enucleation? Blindness.

Shortly after returning home from the hospital last Thursday, the weight of the decision began to settle in ... along with the anxiety. I had already signed hospital consents for some pretty horrible procedures ... each one of my signatures feeling more burdensome than the one before. I don't have the right to make this decision! I don't know what her family's abilities and means are to deal with a blind child versus one who is more likely to develop cancer 10 years from now! I can't do this without some input ... and some chocolate! Stat!

- - - - - - - - - - - -

I was truly looking at this as a fork in the road ... an 'either/or' scenario ... where a decision had to be made between two yucky choices. However, I think I was looking at it all wrong. The head of the missions organization through which Ma come said something this week that changed my outlook: "I do feel maybe radiation is a good thing to try first. There is no going back once they remove the eye." While she was clearly stating the obvious, it was something I needed to hear. While it could be considered a fork in the road, one direction was unfolding into a road clearly blockaded with warning signs leading to a dead end, or blind end. No, it's really more of a bump in the current road, or a pothole, if you will. This long, rough road may leave some damage, but it will hopefully lead us to a positive place.

We have forwarded all the information to Ma's parents through the liaison in Abidjan to see what questions or concerns they might have. However, typically, the parents have full confidence in the organization, the host-family, and the doctors to make decisions on their behalf, so we're not expecting any input. So, we forge ahead! Next week we have no less than 6 appointments scheduled for follow-ups, check-ups and consultations. It will take us on a tour of the University of Michigan Health System - Mott Children's, the University Hospital, the Cancer Center and finally Kellogg Eye Center. When all is said and done, they may just have to wheel Ma and I to the one area we haven't visited yet - the mental health wing!

I've chatted with many people in the week since, and I've been ever so reminded of how fortunate we are to be surrounded by caring people from our church, our children's schools and our community at large. Ma has an enormous cheering section!! And she needs it, because we're not done fighting yet!

re: update on ma for may

2014-05-14T13:21:00.004-07:00

Ma, looking like she was in a baby boxing match, but still smiling and showing off the absence of her port.

May 14, 2014

Ma had her monthly exam under anesthesia yesterday where they use ultrasound to take a good look at her eye and assess what needs to be done. Each time it gets a little harder on Ma ... and little harder for me to watch. She knows all too well what's going to happen. The pre-op scene is pretty awful at times. The child-life specialists, bless their hearts, do their best each time to help, but there's really just no way to make things better. Per the norm, Ma was administered a pre-op sedative and was carried back to surgery by the anesthesiologist. I was escorted out to the waiting room pushing an empty stroller.

The procedure took a little longer than normal. When it was time for the doctor consult, I knew right away the news wasn't great when her ophthalmologist didn't meet my eyes. He started by saying that Ma did well during surgery and that her port was, in fact, out.

This is where we all were supposed to be jumping for joy! Right!?!

However, it was evident there was more to be discussed. After such a good report last month, it was very disappointing to learn yesterday that some new cancerous seeds were visible in the fluid portion of her eye. As I mentioned before, these are very difficult to treat and left unattended, will quickly multiply and spread. Dr. Demirci did some more cryotherapy and gave her a shot to the eye with chemo while she was under.

After consulting with the interventional radiology division, it was decided that the next best course of action is to do intra-arterial chemotherapy, a treatment that was discussed in the past, but postponed to try less invasive procedures first. Dr. Demirci explained that in cases less severe than Ma's, they would have typically done more systemic chemo, cryotherapy and intra-ocular chemotherapy at this point. However, in his experience, they would just be prolonging the inevitable with Ma.

It truly breaks my heart to say that this procedure is the last ditch effort to save her eye.

Ma is scheduled to receive her first dose of intra-arterial chemotherapy next Thursday. They start at the artery in her groin and go all the way up to her eye to deliver chemo locally at the site of the tumor. From my understanding, this will hopefully reach a part of the main tumor (from where the seeds are suspected of coming) that the other procedures and methods have not. This procedure is still relatively new (6-7 years) and comes with some risks ... damage to arteries and mini strokes. Hopefully we will know more in the upcoming days as someone from interventional radiology contacts me.

Yesterday was tough. Poor Dr. Demirci and all of floor 4 was met with a splotchy-faced, puffy-eyed, fragile 'momma' yesterday. When we got home, Ma and I ate a lot of salted dark chocolate to replenish lost salinity. However, wouldn't you know it! That little girl bounced right back after a long nap and a very large plate of lasagna. She still has yet to open her eyes today, but doesn't seem to be bothered one bit.

That little girl is strong. And she makes me strong just being in her presence.

Please continue to keep Ma and her family in your thoughts and prayers. If the news yesterday was crushing to us, I can't even begin to imagine how devastating it will be to her parents, because this clearly will add several more months to the time they get to see their little girl.

question re: ma - retinoblastoma?

2014-05-12T14:09:00.002-07:00

photo from http://knowtheglow.com/?q=chlavision

Our family has been asked many questions over the last 9 months concerning Ma, our borrowed baby from Ivory Coast, Africa. I'm taking on the task of answering some of the more popular questions ... because, after all, it has been an interesting journey. Please scroll up or down under the "re:ma" tab for more Q&A posts, or click on one of the "subscribe and follow" buttons found in the upper righthand corner to receive notices for future posts.

In honor of World Retinoblastoma Awareness Week this week, I will chat a bit about retinoblastoma. Since there is a wealth of knowledge on the internet available at the click of a button, I will not go into all the details, but will mostly share Ma's more personal journey with the disease.

Question: Could you tell me more about retinoblastoma?

Diagnosis: Medical personnel in Ivory Coast, Africa, originally thought Ma might have had glaucoma. Due to her rapidly declining health, it appears her parents suspected something more serious and pushed to get her to the States as soon as possible. Shortly after her arrival last July, it was determined that Ma had a pretty advanced case of bilateral retinoblastoma, a rare form of eye cancer where tumors grow on the retina, the inner layer of the eye responsible for sensing light and sending images necessary for vision to the brain.

Retinoblastoma is usually diagnosed before age 2. There are between 250-300 new cases diagnosed in the United States each year and about 5,000 worldwide. Though it apparently affects all genders and races equally, children like Ma in developing countries have cases that progress further because the diagnosis is slower or unavailable.

Treatment: Treatment for retinoblastoma varies depending on the extent of the disease. In Ma's case, the tumor in her left eye had grown large enough that her treatment required enucleation, complete removal of her eye. Also, because of the size and location of the tumor, it was assumed (although not confirmed via a scan) that cancer had metastasized, or spread, to other parts of her body. This is the reason they decided to do 6 rounds of systemic chemotherapy.

Her right eye also had a sizable tumor that they have been treating on a monthly basis with cryotherapy. This process freezes and kills the cancer cells and has shrunk the tumor in Ma's right eye to about 2/3 its original size.

The other complication in Ma's case is that small portions of the large tumor in her right eye had broken off and were suspended in the vitreous (fluid) portion of her eye. These "seeds" are very difficult to treat. Her ophthalmologist chose to perform intravitreal chemotherapy, delivering the chemotherapy into her eye with a needle and syringe, in order to try to treat the seeds. This treatment was the first of its kind performed on a pediatric patient at Mott's Children's Hospital. This speaks to the rarity of retinoblastoma and furthermore, the scarcity of severe cases in the United States!

Prognosis: Genetic testing on Ma is currently underway, however when a case like hers is bilateral (tumors occurring in both eyes), most of the time it's genetic. This means there is a mutation in the RB1 tumor suppressor gene, which will make her more susceptible to secondary cancers for the rest of her life. This also means she will have a 50% chance of having a child, should she choose to have one, with retinoblastoma.

Public Service Announcement: Generally speaking, the prognosis for patients with retinoblastoma in the States is quite good, i.e. almost 95% of patients are cured and 90% are able to retain one eye. The reason being it is usually diagnosed early due to the simple leukocoria screening a doctor does during well-child check-ups: shining a light into the pupil to detect the presence of white light reflex. The white reflection is typically due to a mass in the back of the eye.

Leukocoria, or cat's eye reflex, can also show up in photos where a flash has been used. When a child's eye reflects white rather than red, the child should be seen immediately by an ophthalmologist to rule out retinoblastoma. In this day and age where nearly every person is carrying a camera phone, this simple test is readily available. Please be aware and pass this information onto any photographers you know. Click here for a closer look at some images of eyes with warning signs. #KnowTheGlow

Interestingly, Ma's ophthalmologist is involved in making an app for smart phones that can be used by medical personnel in developing countries for easier and earlier detection of retinoblastoma. Ma was involved in a "photo shoot" the last time she was in for an exam. Here's to science and technology saving lives!

re: an explanation from the crazy crying lady at the park

2014-05-09T12:45:00.001-07:00

Ma on the slide at the park

We had some very tough periods of time with Ma over the winter where she would cry ... a lot ... and loudly ... for days at a time. We did the best we could to comfort her and fix the problem. However, many times the problem wasn't within our means to fix.

We had to go on about our daily business and get used to the fact that Ma would cry while we were out in public. The grocery store was the worst. Oh, and Pippa's swimming lessons. Most people were kind enough not to stare, but sometimes, I got that look. You know the one: the why-can't-you-get-your-child-under-control?-look. I know the look well, because I'm guilty of giving it at times myself. Now I know better. Much better. Most parents are doing their best at parenting every day, and kids just have their moments. And we just don't know as bystanders what the parent or the child is dealing with during those moments.

It crossed my mind several times during these moments to make business cards to explain my situation, not that people really needed to know, but I imagined the cards would say something like this:

Yes, I realize the child in my care is crying.

Why, you ask?

Let me count the ways:

1. She might be hungry, tired or need a diaper change. However, I do my best to attend to these needs so they are not a factor.

2. So let me just get right to the point: She has cancer. Though she looks like she's a healthy child - something we've worked very hard to maintain - she has a very bad case of retinoblastoma, eye cancer.

3. She is going through chemo to treat said cancer and she probably feels pretty crappy.

4. Her meds make her constipated. We all know how uncomfortable that is, don't we?

5. If you hadn't noticed, she only has one real eye, resulting in depth-perception problems. In addition, she has a pretty significant vision deficit in that eye due to the tumor the doctors are currently treating. This makes her uneasy in new situations and makes her startle frequently. Beyond that, add the fact that she's just learning to walk, and you have a bit of a hazardous situation on your hands at all times.

6. And here's the real kicker - I'm guessing it's obvious, but we are not her real parents. Her real parents are in Ivory Coast, Africa. They put her on a plane to the States on her first birthday with the desperate hope of saving her life. She is stuck with us for the time being - a crazy white family who looks and smells unfamiliar, does unfamiliar activities, eats unfamiliar foods, speaks an unfamiliar language and often takes her to the hospital for awful procedures that no child should ever have to endure!

Believe it or not, the word limit on business cards is much less than the number of words contained in the above rant. Plus, things with Ma have improved this spring. We had no idea how much chemo was affecting her personality since she joined our family after she had already had her first dose. She is really quite pleasant most of the time! So, the need for the above proposed business cards had subsided.

Today, however, I wanted those cards again. I took Ma to the park to play ... really for the first time ever. We took her once last fall, but she mostly stayed in the stroller because she got freaked out by the swings. Since then, she's been sheltered from most places that have germ-spreading children in order to protect her from getting sick while undergoing chemo.

Ma's wonder and excitement today made my eyes start to sting a bit. I never really thought about it, but she doesn't really know what to do on a playground. She sort of just stood there, taking in everything. I had to help her navigate since it was unchartered territory, which can prove difficult with her limited eye sight and toddler-instincts. I led her over to the steps of the slide. She's much more confident now and decided, after a small amount of time, to climb up with my help. I led her to the top of the 4-foot tall slide and had her sit still while I made my way down to the bottom of the slide to eventually catch her. After a little encouragement, she took the plunge and slid down. The squeals and giggles from her first slide experience was more than I could handle and it brought real, big tears.

I needed those business cards again today.

But not for her tears ... not for tears of pain or fear. But for my tears ... for tears of joy.