The Plans

The Treatment Plan

Neesha and Phin walk between units at CHOA

Somewhere across the Atlantic Ocean, far away in Italy, a 26-year-old woman with 0+ blood type is preparing to be put under anesthesia to undergo a thirty-minute or so procedure where surgeons will extract liquid marrow from the back of her pelvic bone. 

There's a good chance she may have to fly or take a train to a different city to give this donation. She might have to take off from work, and to leave all that's familiar to her--family and friends--to offer up this gift to a little six-year-old boy who lives across the ocean in the United States, a little boy who bravely battled leukemia when he was four-years-old, only to have it return again almost two years later. A little boy whose best chance at survival is her--a 26-year-old stranger across the ocean. 

Having studied abroad in Italy as a young twenty-something myself, I (Neesha) can almost smell the cornetto cioccolatto (flaky chocolate croissants) fresh out of the oven, wafting through the air as she passes over cobblestone streets in her ballet slipper shoes on her way to a train station somewhere on the edge of town. I can almost see her reflection in the windowpane transposing her face against the Italian countryside as the train rolls along to its destination. Feelings of anxiety, determination, conviction swirling inside as she moves further from home, closer to her donation site.

European donor laws dictate that we cannot know this woman, this willing savior, nor her identity in any way but through anonymous letters sent through the NMDP over the course of the next two years. Once those two years are up, if she chooses, we can discover her identity and attempt to thank her properly for her selflessness, no matter the outcome. Although really, what thanks could ever be enough? 

Until then, we are confined to anonymity, our letters subject to NMDP readers who will censor any identifying information that cannot yet be shared. This means we have approximately two years to learn Italian. I have already started Phin on "Ciao." I am brushing up on my Italian (it's been 23 years since I studied abroad in Italy). I propose we all learn so we can visit her together when Phin is 9 years old to show her how grateful we are!

By the way (interjects Dustin), we fully understand the need for anonymity in this process. We applaud that feature. Consider what might happen without that measure of anonymity. It isn't hard to imagine the terrible possibilities if the bone marrow donors and the recipients (and their families) all knew who each other were beforehand. Keeping secret the identities of the parties involved helps safeguard this beautiful, selfless, miraculous act against corruption, extortion, and violence. 

Phin prepares for more scans at CHOA

As so many of you know through following Phin's journey, we were in Atlanta for a good portion of this past week where Phin underwent a variety of tests: lung, heart, kidney function, psych evals, social worker evals, financial evals (for us)...etc. He had three pokes (needles), three IVs, and about 6 blood draws. He spent at least 5+ hours in various hospital rooms for two days in a row. As per usual, he was a rockstar. There were moments of fear; there will be lost of adjusting, but a few things were familiar: the warmth, care, and love for patients that we have grown accustomed to, and Aries, dog of war, who will be a furry friend to Phin during his stay. 

So here's the plan, as I know many of you have asked and been waiting for updates. Thank you for your patience and grace, Phin phans. It means so much to us that you care and that you're following along. It's easy to feel lonely in this childhood cancer world, but because of you all, we have never felt truly alone. 

Tuesday, May 21: Dustin, Neesha, Pepop (Neesha's Dad), and Phin move to Atlanta to settle in for Phin's transplant

Wednesday, May 22: Phin has his first official clinic visit (all his testing was in the hospital specifically, so we have yet to see the pediatric oncology clinic, which is also in the hospital)

Thursday, May 23: Phin admitted to hospital; central venous catheter line (aka Hickman or CVL line) placed, chemo begins*

Thursday, May 30: DONOR DAY! Our hero in Italy will donate her marrow today; the courier will await the completion of her procedure, then immediately take the donation, jump on a plane and fly back to Atlanta where they will bring the donation to Phin at the hospital

Friday, May 31 (aka Day 0 aka Phin's "rebirthday"): Phin will be given the new marrow from his donor. This is received by him just like a blood product transfusion via his CVL. The procedure is definitely more invasive for his donor than it is for Phin

Phin and Pepop have lunch 
after a busy morning at CHOA

Saturday, June 1: Phin and Pepop will celebrate their birthday. Phin will turn 7; Pepop will turn 82**

At this point, our biggest prayer is that the marrow will then make its way into Phin's bones and start setting up shop and churning out some new bone marrow. If this works, it's called "engraftment" and usually takes place about 2-4 weeks following his receiving of the new marrow. If it works, Phin's blood type will also change to reflect the blood type of his donor. He will go from AB+ to O+. 

There will likely be graft versus host disease (GVHD). They will be monitoring Phin's vitals, weight, blood work, and organ functions very closely for infection and diseases that can flare up or occur as a result of his marrow being wiped completely out. Some expectation of GVHD could result in the killing off of any leukemia cells inside of Phin that may have survived or hidden themselves well enough as to not be detected. 

(This reminds me: the results of Phin's most recent biopsy tell us that he is STILL in remission as we head into transplant (we were in Atlanta when we got this news, so it may have been overshadowed by all the new info we were getting, but was still HIGHLY celebrated when we learned of it.) 

For the weeks following, there will be many potential dangers and the three of us will be diligently taking turns at his bedside (two at a time) keeping him positive, active, and engaged as much as he is able...and watching for any dangers that may be on the horizon.

We will be in Atlanta, at the bare minimum, for at least 100 days following transplant.

The Home Plan

So what about our girls, right? 

The girls are finishing up school this coming week, then Obelia will begin theater camp and continue through most of June while Avonlie joins the fray of theater camp in two weeks. That means three shows in June. Once they finish theater camp, Av has one more theater camp in mid-July and both girls will attend soccer camp (maybe a volleyball one for Av, too) during July, as well. 

They will likely also be in Florida for a week or so visiting cousins and celebrating my sister's birthday. Granny will be the main touchpoint holding down the fort during this time, although it is our biggest hope that once we are confident the worst has past and Phin is stable, Dustin and I can begin rotating back and forth in Savannah and Atlanta every week or every other week so each of our children will see at least one parent on a daily basis. The twenty-minute commute from our house to the Children's Hospital of Savannah (CHOS) was way more convenient for swapping back and forth every day than the Savannah to CHOA commute (approximately 4-5 hours, depending on traffic).

A Word of Recognition

While we were in Atlanta, one comment I made again and again to various evaluators was that we are extremely fortunate. 

I know that sounds weird given what we're living and what lies ahead, still--and we have a lot of emotions about that we can share in another post--but we have the privilege of having very hands-on, supportive family. My brother Kiran was here taking care of our girls and keeping things on track for at least a month or more since Phin's relapse. My mom has been in our house doing the same and will continue on as long as we need her. My brother Amit, sister-in-law Seale, niece Genevieve, and nephew Jacob, have visited, picked-up, attended events and housed our girls multiple times across these last few months. My sister Sara, brother-in-law Coire, and mother-in-law Vicki all have plans for devoting their time to the care and keeping of our kids over the course of the next few months. 

We have an employer who rearranged scheduling to allow us to continue teaching (which, btw, we do both really love so I hesitate to even call it a job because it feels like so much more than that) and who provides us with excellent healthcare insurance. We have administrative healthcare professionals and organizations who have guided us through this journey, helping us secure secondary critical care insurance for Phin, making the phone calls and sending the necessary documents to the necessary places. We have friends who are willing to jump in at a moment's notice--to mow our lawn, to take care of our pets, to offer a set of watchful eyes, to pull in packages, give advice and lists on tips for navigating Phin's transplant. 

There is no doubt that having a child with cancer is a crummy hand to be dealt, but of all the terrible things about this phase of life, we are incredibly fortunate. Dustin says he's come to think of it like there are different kinds of good fortune. While were were extremely unfortunate in that our son got cancer, we are keenly aware of how fortunate we are. We have good health insurance, plentiful resources and numerous people who can help us, excellent healthcare options for Phin (locally and within a driving distance). We are going into this terrifyingly hopeful part of Phin's cure in a better position than so many other families. Being asked so many questions by our folks at CHOA that revealed the many deficits at work against cancer families really humbled us because even in the face of the worst, we are still blessed a million times over and we are so SO grateful. 

By Request

These are not needs. We talk a lot about "needs vs. wants" with our children so I want to be clear when I say that the following information is offered not out of need, but out of request from so many of you who want to do or give something. We have an Amazon wish list for Phin. It is tentatively titled his "Birthday and Rebirthday" list since from now on, he will forever have a two-day celebration of birth and rebirth. I can vouch for the fact that Phin is content and doesn't really want much of anything. The items on this list are items he's said he likes/wants, that we think he'd like or want; they may be items we see him enjoy regularly (Thin Mint cookies, hot chocolate, cooling pillows/pillowcases) or that he has a similar version of at home but will not have access to in the hospital. A few are things we will have use of while in Atlanta.

Phin’s’ Birthday and Rebirthday List

The Bonfire link is to Phin Phan merch! Our dear friends Betty and Paula and Heather really did a lot of footwork to get our first round of items created and dispatched. We are so grateful for all the time and effort we know that must have taken (although they humbly deny it). Phin does love to see people wearing his logo (courtesy of Marcus Dove at Kustom Hustle) and a portion of the proceeds from these items does still come back to us. In case anyone forgot to order or missed the ordering deadline, these items are "on demand" so you can get them as you think of them or if you decide you want something. 

Phin Phan Merch

Please do not feel obligated to do any of the above. Once we arrive in Atlanta and have a mailing address or room number for Phin, we will share that info, as well.

For now, we are spending the rest of the time we have together packing for the trip and loving one another. Monday we will have a small family celebration for Phin's birthday; Tuesday we leave for Atlanta. Wish us luck and keep those prayers, good vibes, manifestations...all of it...coming our way.

Thank you, Phin pham. You have no idea how cherished you are.

*Chemo in the days leading up to Phin's transplant will be harder than previous rounds he's endured, largely, because this chemo is meant to truly wipe his marrow down to nothing. We've seen his numbers low before, but this will not only wipe him out, but serve as an ablation to opening up his bones for the new marrow.

**If you are new to this journey, Pepop and Phin are birthday twins. Phin was born 75 years to the day of his grandfather's birthday. My dad--Pepop--was present for his birth and very nearly had to deliver his grandson because he was coming so fast. Both of these warriors have been battling cancer simultaneously. Pepop was diagnosed with multiple myeloma one year before Phin was diagnosed with acute myeloid leukemia. Pepop's plan is to stay with Phin throughout treatment. He is a retired physician and we are grateful to have his expertise and devotion in Atlanta.