100 Days

Our Superman. Yes, doctor--that's a beer in his hand.

Parrish hit the 100 days post-transplant mark this week. Honestly, it came and went without a lot of fanfare. We went to church, played at the park, made s'mores at a neighborhood party and wrestled two tired little boys into bed...it was just a normal day. And, really, "normal" was the perfect way to celebrate getting to this milestone.

Although Parrish has not technically been discharged back to his oncologist yet, that doctor seems to have taken the lead. In a matter of 24 hours, the oncologist had a PET scan scheduled, had responded to multiple emails and was in charge.* Ahhhh...I think I just unclenched my jaw. 

It has been a long 100 days. Well, let's get real, it's been a loooonnngggg 9 months. We have struggled more, hurt more, pushed more and grown more than I ever thought possible. I wouldn't wish this kind of year on my worst enemy. At the same time, we have been loved more, cared for more, and prayed over more than I ever could have imagined. For a lot of this year, I have had to keep my head down, barreling through it the best way I could, trying desperately not to let the pieces of our lives crumble around us. As caregiver and chief cheerleader for Parrish and mother and chief protector of Ivey and Campbell, I know I made a lot of mistakes along the way. I didn't do exactly what I should have; I didn't care for those outside the four walls of our house in the ways they needed; I let others' milestones pass by without acknowledgement; I dropped balls at work and in the world and perhaps never even realized. Trust me, I recognize my many failures along the way much more than anyone else. 

Throughout these last 9 months, though, friends, family and complete strangers picked up those dropped balls (and didn't find the need to remind me of just what I failed to do); friends and family made our milestones huge priorities (without pointing out that I had missed theirs).  Friends, family and complete strangers have shown up--each and every day--these last 9 months in unimaginable ways.  I can't tell you the number of phone calls, emails, texts, prayers, cards, food (immense amounts of food), visits, and acts of extreme kindness my family has been privileged enough to receive. I have so many stories to share, so much thanks to give. I won't ever be able to write enough thank you notes (yes, I am giving this one up). Instead of staying up all night for the next 12 years trying to write notes to express just how thankful I am, I have decided to take what all of you have shown me this year and pay it forward. I am just going to show up.

I'll be honest, I don't think I have shown up enough in the past for those in need. All blog evidence to the contrary, I am actually a very introverted, private person. I am totally comfortable praying for those who need it in the comfort of my own home (or car or shower). I think about and feel for friends, family and complete strangers all the time. I just don't think I have let them know that enough. I have worried that someone might think it was weird if I wrote a note that I was thinking about them during a rough time...they might be uncomfortable if I showed up to wait with them during a family member's surgery...they would wonder why on earth I was dropping off food when we weren't really that close. Despite feeling like I was walking along with folks through a lot of their journeys, I haven't wanted to intrude. I have learned, though, that showing up isn't intrusive. In the middle of pain and suffering, those in need cannot articulate what their needs even are. Showing up, with the smallest of gestures or simplest of words, is sometimes the only thing that gets someone in need through a day, an hour, a moment. So, going forward, I am going to show up with words and prayers and acts...and a whole lot of food.

I am also going to show up here more. Although I have been absent from this space lately, I want to continue writing. These months have forced me back into a writing rhythm that I haven't had in a while, and it feels good. I might be showing up in a different virtual spot (one less medically driven I hope!), so stay tuned for that.

Happy November to everyone...and happy 100 days to Parrish. Here's to many more normal days ahead!

Love,

Molly   

*Weekend Update: Parrish's oncologist called over the weekend with the scan report. Drum roll please! Parrish's PET scan came back completely clear...even the spot in his lung is gone. The oncologist said "I told you so...just some sort of inflammation." He loved getting to say "I told you so," and we loved the amazing report. Thank goodness we did not subject Parrish to an unnecessary surgical procedure (our gut instinct was right!). Such an answer to prayers!

Radio Silence

I think my lack of blogging is starting to freak some people out. Part of it is just that the rigors of life have gotten in the way (things like a full time job, two young kids, the month-long Halloween celebrations…you get the picture). Part of it is also just sheer exhaustion with where we are on this cancer/transplant roller coaster. While it is true that Parrish is doing better and in some ways getting back to normal, there is still a long way to go. The boys and I see that more than anyone else does. It is true what they say--that it takes a full year to recover from a transplant. It is hard to comprehend that until you are in the middle of it, though. My radio silence is a sign that I just can’t spin where we are right now. 

It has been a long month. Parrish’s scan from a couple weeks ago didn’t give any answers or insight into the spot on his lung. So, the BMT team would like to proceed with the surgical biopsy. They were supposed to call last week to schedule that. Of course, they didn’t. Parrish is so close to the 100 day mark (November 3^rd), that I am inclined to wait until he is discharged back to his oncologist to deal with the spot. Parrish will be due for another PET scan at that point, and I think that the oncologist is the right person to handle this from here on out. I also think that this might just be part of it right now. Parrish is going to have weird spots—and they could be for a variety of reasons—scar tissue, chemo side effects, infection. They could also just be spots that show up in people all the time and "regular people" never know about them. But, because Parrish is getting these full body scans, we see them…and are hyper-sensitive to them. I also think that the fatigue, nausea, vomiting, swelling, colds, coughs and more…well, that is just all part of the recovery process. These symptoms aren’t going to go away overnight (or even in a few months). Even though it feels like it has been forever, Parrish is still in the early stages of transplant recovery. It is easy to lose sight of that. And at the same time, it is hard not to get impatient with the healing process or the setbacks.

Let’s be honest. We are all getting sick of our new reality. And, the stress is taking its toll. Case in point--I have been diagnosed with a pretty bad case of TMJ (the oral surgeon thinks that I am clenching my jaw while I sleep at night). It is bad enough that my upper and lower jaws are shifting, causing a lot of pain and changes in my teeth. I mean come on…does it always have to be something relating to my face...first a bum eye, now a bum mouth?! In addition to medicine and a night guard, the doctor also put me on a liquid diet for 8 weeks. After about 10 days, I have taken myself off of the medicine (which made me crazy) and have taken a step back from the strictly liquid diet. No food and weird drugs made for a rather unstable, extremely hungry Molly. Not exactly what any of us needs right now. The oral surgeon said he would normally tell people with this problem to de-stress their lives, but he decided there was just no hope of that for me. It will all be fine (especially now that I am not starving). But, needless to say, all of us could use a reprieve. I mean, surely we’ve hit our limit on pain, suffering and learning life lessons from trying times. (See, maybe radio silence is better than brutal honesty.)

Don't get me wrong, there is so much to be thankful for. So much. And, that is what I try to focus on. Parrish is doing better...there doesn't seem to be much change day to day, but when I compare him now to three weeks ago, he is definitely better. That gives me hope. And, the boys both seem to be getting their spirits back. Campbell is about the cutest thing ever (not that I am biased). And, there is a spring in Ivey's step and a twinkle in his eye that just wasn't there five months ago. In fact, we had family pictures made recently and our dear photographer commented on Ivey's "amazing laugh." I paused, realizing that it was amazing...his deep, infectious, uncontrollable laugh was back. That gives me hope. And, the boys absolutely love our new (albeit, temporary) neighborhood. Watching them run back and forth to friends' yards and thrive in our new house, that gives me hope. 

As the pictures below show, October has been busy (and we haven't even made it to Halloween yet). In the midst of it all, and despite the ever-present stress, I am trying to hold on to the moments, celebrate the small things (or steps in the right direction) and worry less about the big picture items that despite all my trying, I just can't fix. 

Happy fall, y'all!

Love,

Molly

We've had visitors!

A cousin train ride!

Celebrating Daddy's birthday!

Love this smile.

Cherishing these moments.

Cool dudes at the pumpkin patch.

On the hay ride!

Our search for the best pumpkin...

Campbell found one!

Ivey found a bigger one!

Playing music at the art show in Northport.

Playground fun!

Ivey's first Bama game...best day ever (his words).

So close he could almost touch Coach Saban and Big Al!

No Scan Yesterday

**Update on Wednesday Morning--Scan is scheduled for tomorrow (Thursday). Thanks!

Just a quick update on the scan this week. It didn't happen yesterday, and it is unclear why other than the BMT folks just didn't get it scheduled. (In case you can't read between the lines, yes, there is a wee bit of frustration in the previous sentence.) Soooo....hopefully, Parrish will have the scan tomorrow (Wednesday) at 11. They are supposed to call and confirm sometime this afternoon. Will keep everyone posted! 

Thanks for all of the thoughts and prayers!

Love,

Molly

The Long and Short of It

Parrish had his weekly follow up appointment with the BMT unit yesterday, and we got to have a face to face meeting with his lead BMT doctor. We had a bunch of questions and concerns relating to the latest PET scan and CT, and the doctor had more information (and a new plan), based on his discussions with a variety of specialists. 

First, I was (wrongly) operating under the assumption that a PET scan only showed cancer--that only cancer cells "glowed" on the scan. In fact, other types of cellular masses can glow. A person is given a dye comprised of a sugar substance prior to a PET scan. This substance is absorbed by overly active cells (it is called "uptake"). Cancer cells are extremely active and therefore, absorb a high concentration of this sugar substance which makes them have a really bright glow on a PET scan. However, other types of cells are also overly active--infection sites or areas of inflammation, for example. These cells will also absorb the sugar substance, but not in such high concentrations as cancer cells, because they are not as active. So, a place of infection or inflammation will have a weaker glow on a PET scan, but these spots will still be considered "PET positive" on a radiology reading. 

All of this is to say that the mass in Parrish's lung is PET positive--but it has a very weak glow, which is why the doctors think it is highly unlikely to be cancerous. In addition, there are no other indications on the scan of cancer activity. The team of doctors agrees that the best next step is to perform a CT angiogram on October 7th. This is a type of CT scan that uses an IV line to get better imaging of the heart and blood vessels. Why are they using this scan? One thought is that the mass in Parrish's lung could be a pulmonary embolism, and the CT angiogram will help diagnose this (or rule it out).

If you are like me, you hear "pulmonary embolism" and think really, really bad things. Not all embolisms are the same, and if this actually is one, it is small and would appear very treatable. People who have cancer or have undergone chemotherapy are actually at higher risk for these, so it isn't an uncommon situation (not necessarily what you want to happen, but not unheard of). Parrish is not exhibiting any of the typical symptoms of a pulmonary embolism--chest pain, shortness of breath, swelling contained to one side of the body, etc. But, the doctors want to rule it out.

If the CT angiogram comes back inconclusive, then Parrish will have a biopsy. Because of the location of the mass and its size, doctors won't be able to perform a small needle biopsy. They will have to use a larger needle with robotic assistance. Because of where the mass is, there is a risk that the larger needle could puncture Parrish's lung, which could the result in the need for a chest tube. Thus the reason for first performing the CT angiogram. Everyone involved would like to get an answer without doing the larger needle biopsy and subjecting a post-transplant patient to a potential chest tube.

So, this is the long way of saying, we still don't have any answers. After a long week of hustling to talk to doctors, reading scans, researching and more, we now just have to wait. But, we do have a plan. That is something. And, the BMT doctor is not alarmed by the dip Parrish is having--the fatigue, morning sickness, facial swelling and lower leg/feet swelling. I know, I think it is crazy not to be concerned by these symptoms appearing at 60+ days after transplant and not before. But, clearly, these doctors know more than I do. And, I think this is just all part of it. A bone marrow transplant is a really, really big procedure...and it takes time for a body to rebuild and fully recover. These dips are going to happen, and there really isn't much to do about it. 

The good news is that the doctor gave Parrish the green light to go on his annual fishing trip with dear friends. That has been the goal everyone has been working towards the last few months. This is a trip that all involved look forward to, and these friends have supported Parrish (and me) in truly unimaginable ways the last eight months. I want nothing more than for this group of guys to have a weekend to celebrate their friendship and look forward to many, many more fishing trips in the future. 

Happy weekend to everyone!

Love,
Molly



**And, for comparison's sake, here are a couple of pictures of Parrish from the last month. You can definitely tell a the change in appearance.

Here is Parrish a month ago.

And here is Parrish a week ago. 

Ugh.

Parrish had a follow up cat scan last Thursday to see if the spot on his lung had reduced in size after two weeks of antibiotics. Unfortunately, it is still there and no smaller, which leads doctors to believe that the mass is not because of an infection. Definitely not what we wanted to hear. Although the doctors say that it is “highly unlikely” that the mass is cancerous, they are scheduling a needle biopsy this week. Ugh. I have no words, just…ugh.

 

I hear the “highly unlikely” part, but I also live in a world where “highly unlikely” medical issues seems to arise all.the.time. I mean, we have spent the last eight months dealing with a “highly unlikely” recurrence of cancer 18 years after the fact. I am very well-versed in “highly unlikely.”

 

And there are other symptoms. In the last two weeks, Parrish has had unexplained swelling in the face, neck, lower legs and feet. He has been more fatigued; his color has been off. If Parrish were continuing to improve, then it would be easier to explain away this lung issue. But, he is worse now than two weeks ago. This all just feels too familiar, and it is so unsettling.

 

It is also a very ugly reminder that this fear over scans—at 3 months, at 6 months, at 1 year, at 5 years, at 18 years—is going to be with us for the rest of our lives. There is just no escaping it, and that realization feels almost too much to bear right now.

 

Parrish says he isn’t worried. But, his eyes tell me something else. I admit that I am worried, but it wouldn’t do any good to lie. Take one look at me and you will see worry written all over my face. This isn’t how we wanted to be ringing in a new season, not how Fall was supposed to start. Ugh.

 

I hope that I am worrying unnecessarily. I pray that the biopsy will show nothing…that doctors can do more tests and determine that this isn’t a chemo-induced lung problem…that the mass (and Parrish’s symptoms) just go away. I pray that in the days and months ahead, we can worry less and celebrate more.

 

Much love—

Molly

Falling into a Rhythm

With Labor Day behind us, the start of football and Ivey's first day of 4K, I can feel fall (even if temperatures are at record highs). I have always loved fall, and in Alabama, fall might just be the most wonderful time of the year (Roll Tide). But this year, I am really looking forward to fall. I need a new season and even more so, need to put the last few seasons far behind us.

On the health front, Parrish continues to improve, and the BMT folks say that he is ahead of schedule as far as recovery goes. (He is such a little cancer over-achiever!) His counts continue to go up with each clinic visit, and he is slowly gaining weight and strength back. Of course, this isn't to say that he is 100%. Parrish appears to be pretty highly functioning, but he still gets tired easily, especially when hanging out with the boys or in larger groups. He just doesn't have a lot of stamina. He still can't do what he used to. Recovery after a bone marrow transplant is a process, though...it doesn't happen overnight. Really, it takes 6 months to a year to completely recover. So, things are continuing to move in the right direction, but slowly. And, I think Parrish is fully starting to realize just how sick he was and just how long of a process this is. I showed him a picture taken of him last weekend, and he was shocked. "When did I start to look like such a cancer patient?" he asked. And, it is sort of true. He looks (and feels) more like a cancer patient now than he ever did with "regular" chemo treatments.

 

There is also the continued risk of infection. As we head into fall...and cold and flu season...the risk of infection only increases. Six months after transplant, Parrish will be able to get his flu shot (at a year out, he will get completely re-vaccinated...all those baby shots revisited). Until January though, we will have to be really careful regarding the flu. The boys and I will have flu shots early on (not the mist, since Parrish can't be around those who have had a live-virus vaccine). One way others can help with the flu risk is to get vaccinated...and get vaccinated early. Please, if you think you will be around Parrish at all this fall and winter, please get a flu shot. (Okay, stepping off of my flu shot soap box now.)

 

Yesterday, Parrish had a PET scan. The scan looked good, with the exception of a spot on his right lung. The spot doesn't appear to contain cancer cells (as described before, cancer cells "glow" on a PET scan, and this did not). But, it is a spot that was not on previous PET scans. There are a couple possible explanations. It could be scar tissue that has just recently developed from where the chest tube was placed back in February. It also could be an infection that has developed in the lung at the exit site of the chest tube. To be cautious, the BMT team has decided to put Parrish on some strong oral antibiotics for two weeks. At the end of the antibiotics course, Parrish will have a CT scan to see if the spot has gone away, gotten larger or stayed the same. At that point, we can determine next steps.

 

Needless to say, it was not exactly the news we wanted from the PET scan. We wanted an all-clear message, a never-looked-better message. This sort of news just leaves us feeling unsettled. No cancer...but something they're unsure about. I like doctors to be sure. One way or the other. I don't like to throw medicine at something hoping it will work. I'm prayerful that two weeks on medicine and some additional analysis of the scans will provide more clarity and more peace of mind.

 

Until then, we will continue to ease back into a normal routine, which in the fall includes, among other things, work, school, football (Roll Tide), family gatherings, and catching up with friends. For us, this season will also include creating a family rhythm that puts the fear, pain and worry of the last seven months behind us, without losing the perspective these past months have brought us.

 

Much love and happy weekend,

Molly

 

***And, for those who want them, a few recent pictures...


All ready for 4K

So proud of writing his name!

Celebrating Guh's birthday...and the Tide.

Cousins! (and Bama fans in training)

 



So thankful for these three boys!
 

No News is Good News

I can tell from the texts and emails that my lack of posting is making people nervous! Don't worry, no news is good news (and a sign of how busy life is right now). Parrish is continuing to make progress. His blood counts have continued to improve and stabilize, and he is slowly getting some strength back. He still gets fatigued easily (who doesn't with a 2 and 4 year old around!), and he is still battling remnants of skin issues. But those are things that will get better with time. Now, if he could just gain some weight! Parrish still doesn't have a taste for much these days. He eats, of course, but more because he knows he has to. And, if you know Parrish, you know he loves food. I mean, loves food. So, it is very disorienting to have him so blah about it. Like everything else, it will take time for his taste buds to return, and until then, he just needs to keep eating, drinking and slowly putting on the pounds.

 

We are all trying to adjust to life with Parrish back home, but not back to his old self. It is hard on everyone. We aren't the family we used to be and can't do a lot of what we used to. As everyone heads back to school around here, I think we are all ready to head back to our normal routine. And while there are glimpses of normal...snippets that make me think that one day we'll be back there...we aren't there yet. Despite how much progress Parrish has made, there is still a long way to go (and potential set backs along the way). Just like it will take time for Parrish's body to completely heal, it will take time for our little family to do the same. We will get there, of course; I know we will. In the meantime, we continue to be thankful for each day's small victories and movement in the right direction.

Much love,
Molly