We were wrong.

Although my last post mentioned Maddie’s CT scans showing very little chance of her having Post Transplant Lymphoproliferative Disorder (PTLD), recent tests prove otherwise.

PTLD is defined as the following:

Post-transplant lymphoproliferative disorder (PTLD) is the name given to a B-cell proliferation due to therapeutic immunosuppression after organ transplantation. These patients may develop infectious mononucleosis-like lesions or polyclonal polymorphic B-cell hyperplasia. (Wiki)

In other words, it is a precursor to Lymphoma and is treated like a cancer. Fairly soon, Maddie will begin chemotherapy treatments to eradicate those EBV infected B cells before they become masses throughout her body. Here is a journal article on PTLD discussing the cause and treatment in more depth, if you’re looking for something to do to waste time.

As it is, the PTLD has already begun destroying parts of Maddie’s healthy cells and tissue. Yesterday, we finally had the scoping procedures that we hoped would provide answers for her stomach pain and endless fevers. Otolaryngology, Pulmonology, and Gastro-Intestinal units scoped through her sinuses, lungs, and intestines, respectfully. Each team found something of significance but the GI doctor found the source of the internal bleeding. She has giant ulcers in her large intestine.  The biopsy of the tissue taken from that confirm that Maddie has PTLD.

There is more to explain but I am nodding off as I try and type this update. We’re all exhausted. I know that I left you all on a happy note, believing that we’d be home for fireworks on the 4th of July. But the truth is Maddie has been struggling all week. Pain and fevers and more pain. It has been miserable for everyone.

This isn’t the news I wanted to share and I’m sure it’s not the news you wanted to hear. But this is our reality. We will be here for an indefinite amount of time as we now begin work with the Oncology team. Tests and more tests are planned and treatment schedules are being worked out to begin on Monday.

At least the waiting, living in limbo and feeling helpless about all the unknowns, is over. We still don’t know what will happen in the coming weeks but we take comfort in putting a name to what we’ll face and are grateful knowing there is treatment for it that can be successful.

Again we ask for your faith, positive energy, and prayers. Knowing is much better than not knowing.

In the Clear

Stomach pains

The good news is Maddie seems to show no indication of having PTLD.

Unfortunately, we still have no idea why she continues to have fevers.

But we’re taking the good news of no PTLD, no serious infection or disease, and no further bleeding and cautiously celebrating.

All of the major, scary viruses and diseases have been ruled out from the blood, urine, and fecal cultures they’ve done. Her CT scan today showed healthy bowels, unaffected by the recent interventions, and no abnormal lymph nodes anywhere in her torso. Such a relief.

But despite all this clinical improvement, today was rough for Maddie. Remember how little pain she’d experienced over the week? It all caught up with her today.

Probably because of the poking and prodding from the angiogram, or the vaso-restrictive IV meds she’s been receiving to limit blood flow to her digestive tract, or the ulcers, or a combination of them all, her poor, sluggish bowels were spent. As such, most of the day she curled up into fetal position like you see pictured above. All you can do with stomach pain and nausea is keep a hot pad on your belly and veg out watching “Sophia the First.”

Hopefully, now that all of the testing is finished and they’ve scaled back on many of the medications, her gut can begin to return to normal. The doctors say it could take days or even weeks for all of the old blood to completely clear from her intestines but things should start looking up for her now.

There’s more to the story about her rare anatomy and her bowels but I’ll leave that for another post. Let’s just focus on the good today.

And we’ll tackle the mysterious fevers tomorrow.

Thank you, everyone, for your kind, kind words. Your messages of encouragement, love, and support mean so much to us. We’ve felt your prayers lift our hearts.

From Fevers to Bleeding

Maddie & brothers in the ICU

Maddie is in the hospital again. In the ICU, to be exact.

I realize that, based on my last post, it’s right where we left her, but in real-time that was 6 months ago. Since then we came home, had a dreary (emotionally) but virtually trouble-free (health-wise) winter and spring, she went back to school, finished kindergarten, and seemed to be recovering as expected post-transplant.

Then she started getting fevers that wouldn’t go away.

Let me back up. Not all the way to winter and spring because those are lengthy posts in themselves but at least back to April.

She came to the emergency room at the end of April with a fever and congestion. It turned out that she had an ear infection and sinusitis. A dose of IV antibiotics and we were out the door. Except the fevers continued off and on and a tender lump on her neck became more and more painful, and when the pain went away the lump (lymph node) continued to grow.

A month later, we found ourselves back in the Emergency Department. Her fevers had returned more frequently and more importantly, she had tested positive for Epstein-Barr Virus (EBV). This illness is particularly bad for a transplant kid. Let me explain as best I can.

Almost everyone (close to 95% of all adults) has been exposed to this virus and can build up antibodies against it. Normally, being sick with EBV doesn’t feel like anything more than regular cold symptoms. You never even know you have that particular virus. Kids who haven’t been exposed before organ transplant can contract the virus from the donor organ, blood products (from transfusion), or from saliva contact, and then experience greater effects than normal because their bodies are immune-suppressed. They’re unable to build up the antibodies to fight it off like healthy kids can. Some people end up having EBV infection that can result in mononucleosis (mono) which is not fun, but people with immune suppression face greater challenges, including contracting lymphoma, a cancer of the the lymphatic system.

That’s what her transplant/cardiology team began worrying about when we went to the ER in May. If the body cannot fight off the EBV, the virus’ DNA can begin to infiltrate the lymphnodes through the lymphocytes (a type of white blood cell) in the blood that begin overproducing and acting abnormally. It’s a disease called Post Transplant Lymphoproliferative Disorder (PTLD) which means that it spreads throughout the lymphatic system. The CT scan she received that night showed nothing more than the one enlarged lymph node we found on her neck. Good news but not conclusive. All we could do at that point was watch and wait.

Last week, after the final course of penicillin was completed and multiple clinic visits showed no real change for the worse and a decrease in the EBV DNA in blood, we began to hope that she had built up enough antibodies against the virus and that she was on the mend.

On Monday she went to school and had a normal day. At 2:30AM that night, I went to check her temperature and she had reached 101.4F. My heart sank. The next morning, after attending her farewell kindergarten picnic on her last day of school, Colin drove her over to Children’s where she was admitted for fevers, cough and congestion. Happy First Day of Summer Vacation!

Infectious Disease doctors began weighing in along with her cardiology team to rule out any other crazy diseases/viruses/infections she could have that would account for the fevers. Blood work, labs, cultures, you name it and nothing was explaining the persistent symptoms. Nothing, nothing, nothing. They hadn’t stopped thinking about PTLD but nothing indicated it was the probable cause.

On Friday, after exhausting many of the viral panels and other tests, she seemed to be stable. They were even talking about possibly discharging her for home. That’s when it all took a turn for the worse.

When she got up to use the bathroom, there was a large amount of blood in her stool. No one saw this coming. They made her NPO (fasting) at 9AM, after eating only a small amount of eggs and cereal for breakfast, and prepped her for what would be the first of 4 procedures to-date. That was the last time she had anything to eat.

She was given a Gastrointestinal Endoscopy on Saturday which showed at least one duodenal ulcer at the beginning of the small intestine. It didn’t appear to be actively bleeding so they assumed there must be more down the tract. The scope doesn’t reach far enough. Ulcers are painful. How she hasn’t been doubled over in continual fetal position like I would do is beyond me but apparently she’s not experiencing pain. She is the definition of stoic.

It’s Monday now, and the bleeding has only gotten worse. She is constantly anemic. Despite four blood transfusions, her continued blood loss keeps her from producing and maintaining her own at a stable rate. She has zero amount of feces at this point, only blood. She’s been on IV drip for fluids and is getting what she needs nutritionally but has not been able to eat like she keeps begging to do since Friday morning. No comfort from a full belly. No social pleasure in sharing a meal. Just fasting until the bleeding stops and in preparation for the general anesthesia she’s needed for procedure after procedure after procedure to find the source of the bleeding.

It’s 4:30PM. Maddie has just returned from Interventional Radiology where they performed an angiogram on the veins leading to her intestines. The good news is they found an abnormal venous malformation (abnormal veins branching out on their own and disrupting normal vein flow) into her cecum which (hopefully) is the main cause of her bleeding. The doctors coiled it off and are hoping that this intervention puts a stop to the horrible “blood pudding” that has poured out of her intestines and into the toilet.

But they’re not sure.

Especially since they don’t even know why she developed those abnormal veins in the first place. And so we need more testing done, spaced out a few more days to give her body a chance to process the internal contrast (dye) that was injected today to see the veins before they give her more contrast during the CT scan scheduled for Wednesday.

So, to sum up: we have no idea why she was having fevers and no real concrete reasons for why she was bleeding. The two are most likely not even related.

We ask for continued prayers and positive energy that Maddie’s care team will find answers as they continue to gather data. We need resolution for this poor little girl who just wants to eat lasagna and go home and play with her brothers.

Thank you to all who have sent messages and have called with love and concern. You, our support and respite, our family and friends, continue to sustain us through prayers and generous acts of kindness. Our lives have been in upheaval for the last 14 months, seemingly with more to come, but your constant nurturing allows us to push on. Forward, ever forward.


Note: I apologize that this post is the first time I’ve updated in 6 months. To be quite honest, I have been majorly depressed since mid-January (again, another long post I hope to write). We have had some good times and happy news to report (including Maddie’s upcoming wish to come true from Make-A-Wish!) but mostly, every single aspect of our journey has felt overwhelming. I simply did not have the mental, physical, or emotional energy to journal it. I am feeling much better now (hooray for the passing of time and some good therapy!) and so I hope to amend that now. From here forward, I’ll try to keep you up to speed. I owe you that, dear ones.

Transplant Recovery: Day 2 and 3


On Day 2 (Sunday), Maddie was extubated, meaning they took the breathing ventilation tube from her throat and mouth so she could begin breathing unassisted, first with oxygen in a nasal cannula and then completely on her own with room air.  One out of the four chest tubes for lung fluid drainage was removed.  Two IVs were removed from her right arm. She began drinking and eating again.

On Day 3 (Monday), they removed the second to last chest tube, she walked around the ICU hallway a bit, and they talked about moving her to the regular Cardiac floor sometime this week.

Medically speaking, Maddie is doing amazingly well recovering.

Psychologically speaking, the last two days have been our own private version of Hell.

If you haven’t heard me say this before, I’ll say it again. Maddie is a fighter. And by fighter I don’t mean she is tough and takes what’s given to her like a champ, though she is both of those things. What I mean is, quite literally, Maddie DOES NOT GIVE UP. On anything. Not ever. Period.

This attribute, combined with heavy painkillers and the slurred speech of one coming out of said medications, makes for an extremely irrational 6-year-old.

Oh, you want chicken noodle soup, extra, extra hot from the microwave? Boiling. Great! But you want to feed yourself? No, your hands and arms aren’t fully functional after coming off the strong sedatives used while intubated so I need to feed you. No, you may not do it yourself. No, thrashing around and trying to scratch out my throat will not enable you to do it yourself today. Eat the soup while it’s still hot. Oh, now it’s too cold because you’ve spent the last 10 minutes screaming that you have to feed yourself and you want our kind, patient nurse to heat it up for you again? Sure. Just remember that I’m the one who’s going to feed it to you today. No, screaming will not change that fact. Why don’t you just let the morphine, and Benadryl, and Ativan do their jobs and fall asleep like I can see your eyes want you to do. Oh, you’re not tired. You want to watch the Jim Carey version of The Grinch again but you missed the last part because you keep dozing off, so you want to start it over? Okay, you’ve watched the first 2 minutes ten times now, should we wait until after you’ve taken a nap to watch it? No, you want to start it over again because you missed the last 20 seconds of the beginning that you’ve now seen 30 times? And you want to be the one controlling the keyboard even though your hand is completely unsteady and keeps missing the button? 

Repeated for 6 hours.

Yes, I’m grateful that she is so strong-willed and stubborn. Yes, I’m grateful that she pushes on despite what most would find to be debilitating circumstances. Yes, I know that these qualities will continue to serve her well into adulthood. But GOOD GRACIOUS ALMIGHTY! May the effects of these medications quickly wear off so that we can at least return a little reason to the conversation?

She is good. She is strong. She is doing well.

She is a fighter. With the love of those around her and the prayers and well-wishes of the many who have offered support, we will get through these hard days.

I’m just thankful that these experiences happen in a world where there is dark chocolate.

Transplant Recovery: Day 1

Brave girl

The surgery went well. Better than expected, actually. What we were dreading would be a complicated transplant with excessive bleeding was straightforward and relatively smooth. From the first incision at 5:10PM to when they closed her up at 1AM, everything went as planned. Another incredible blessing to witness.

And there are many blessings that I want to share with you but I am utterly, completely, so profoundly exhausted, as is Colin. They will have to wait a bit to be told.

Right now, know that she is well. She is peacefully sleeping under heavy sedation while the breathing tube gives her minimal support. All of her numbers and vitals are looking good. They’ll begin the immune suppression this afternoon. Everyone is pleased with her current state. They will keep her intubated at least through tomorrow so that she can rest as much as possible.

Again, please excuse the graphic picture but this is Maddie, full of fight and always, always amazing us.

In the ICU after Transplant

A few times she has woken up, disoriented and scared, her wide eyes full of tears and searching for understanding. Her silent cries blocked by the ventilation tube cut to my soul. My hand touches hers and I tell her she’s amazing and that Dad and I are here by her side, not going anywhere. Her brothers are proud of her. So, so many are praying for her, for us. She falls back into deep, healing rest. Her precious adopted heart beats strongly on.

The first hurdle is down. It’s over faster than we ever could have imagined possible. We are astounded. Completely. And so truly grateful.

But we have just begun on this long, trying journey. There are days and weeks and months ahead of challenges and triumphs. Right now though, I am staring at the face of my angel girl, seeing once again her resilience and bravery. One step at a time. One moment at a time.

At the end of this Christmas season, as we’ve focused on the birth of our Savior Jesus Christ, and have witnessed our own Christmas Miracle, we cannot help but see how it is through His love and sacrifice that we are able to endure.

Thank you all for standing with us. Thank you for your prayers and love. We have felt them sustain us. We know we are not alone.

Transplant Surgery Updates

Below are the updates we received during the night as our baby slept on the operating table. I apologize for not posting them here earlier but the blog is not a very effective tool for real time information.

9:30PM – Maddie is on bypass and the heart is in the room.

10:30 – The heart is in and beating. Please send a prayer of thanks, healing, and strength on behalf of the donor family.

11:07PM – The transplant is complete. That sweet, miraculous heart is beating strong in our precious baby girl. The doctors are pleased with what they see. They have some additional monitoring and wrap up to do before we can see her but our spirits are lifted knowing that the surgery is over. We are so incredibly grateful. Your prayers, every single one, carried us through these long horrible hours. It is only by the constant companionship of the spirit of God that we could pass through this trial. And it is only through His guiding hand that we will go forward still. Thank you all for your unending support. More updates to come.

Transplant Has Started

PHOTO CREDIT: Tami Cutler PhotographyPHOTO CREDIT: Tami Cutler Photography

The Cardiac Team called from the Operating Room. The transplant surgery has begun. Her complicated anatomy will make this already detailed procedure especially labor-intensive and difficult. We expect it to last as long as 6 hours, probably more.

We are breathing. In and out. It’s one moment at at time now. Our prayers are heard. We know that.

Again, thank you all for your support. Your faith strengthens ours.

Waiting for Transplant

Watching the rain

We’ve been waiting all day long. I feel like I’m going to burst. The anxiety is like a solid ball lodged in the base of my throat. This unknown is unbearable.

They just took Maddie to the operating room. Everything on our end looks good so far but we still don’t know for sure if this transplant will happen today or not. Anesthesiology is getting her prepped for surgery. We should know within the hour if we are moving forward.

Maddie was scared, still fighting off the sedative as we kissed her goodbye at the OR doors. She never, ever gives up. It’s this strength that we look to as we step into this darkness.

But we know we are not alone. Thank you, every single one of you, who have expressed love and support. Your prayers are tangible. They are lifting us up.

Please, please also remember the grace and goodness of the donor’s family at this time. They need our prayers. Our chance at life is at the mercy of their tragedy.

I will post more as soon as we know.


We just got off the phone with Seattle Children’s Hospital. I didn’t even get a chance to let you know that we had listed Maddie for heart transplant just this Tuesday. My hands are shaking as I type. They called to say that they may have a heart for Maddie. We check in at 9AM tomorrow morning (Dec. 26th). I am in complete shock. There will be several hours of testing to determine if it’s viable but Maddie may be in surgery as soon as 2PM tomorrow afternoon. We are so grateful for all of you who have prayed for us before. Please, we are in need of that love and support again. I will post more as soon as we know if the transplant is a go.

Discharged From the Hospital

Bringing home half the hospital!We have our own family Christmas miracle. Maddie came home from the hospital today!

I have so many more things to say but at this moment I am exhausted. Sleep is long overdue.

In the meantime, know that Maddie is doing pretty well. Her energy is up and she is completely off the IV medication (milrinone). We’re looking forward to a relaxing, simple Christmas together at home.

Thank you! Thank you so much, everyone, for your unending support, your love, and your prayers. Every meal, act of service, babysitting hour, thoughtful word, and especially prayer strengthened us. We’re so grateful to be surounded by such good souls and thankful for the wonderful new friends we continue to meet on our journey.

I promise to update further, but for now, please just watch this video. It sums up the joy our family feels for Maddie’s return perfectly.

Sibling Train from Jeannie @ Live. Laugh. Learn on Vimeo.

Reflections on our family's joys & trials