Thank-Full

How to describe the array of emotions this week...such breathtaking gratefulness. Today was filled with lots of those low-key, magical family moments...parade watching in pajamas, football throwing, s'mores making and turkey leg eating. It ended with a Thanksgiving dinner with some of our nearest and dearest...leaving us with full tummies and hearts. Happy, happy Thanksgiving to all!

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

Progress

Just a quick update...a lot of activity at home means little time for blogging! Yesterday was a day of real progress for Parrish. His color was better; he seemed somewhat stronger; he got around better; and he just acted more himself. He spent several hours in clinic yesterday morning having labs drawn and getting a bag of fluids (fluids help everything!). Labs showed that all of his levels are moving in the right direction. WBCs are within normal range, and platelets, RBCs, hemoglobin and potassium are inching their way up.

Parrish continues to rest and work on walking little bits here and there. He is walking to the stop sign and back a couple times a day. And, he managed to walk from the parking deck to the BMT clinic yesterday morning (anyone who has spent any time at UAB knows this is no small feat). His job now is to keep eating and drinking. The more he eats and drinks, the less IV fluids he will need in clinic. That translates to less time at the doctor and more time doing way more fun things!

We are all so thankful for continued progress.

Much love,

Molly

Daddy's Home!

Parrish is home! Here are a couple (very blurry and poorly lit) I-phone photos to prove it...not sure who has a bigger smile, Parrish or the boys.

Homeward Bound

Parrish's white blood cell counts have continued to move in the right direction, and his neutrophil levels are above where they need to be. Based on his white count, Parrish will likely be able to go home this week, maybe as early as tomorrow. This should be a good thing, right? But before everyone gets out the fireworks and the balloons (or starts planning a party), it might help to understand what discharge really means. 

First, the discharge threshold is really based on a patient's white blood cell count and specifically, the neutrophil level. Check...Parrish meets that threshold (exceeds it, actually). But this number says very little about a patient's pain, stamina and ability to perform daily functions. Parrish has shown a lot of improvement over the last couple of days, but by improvement, I mean that he has walked a few laps around the unit (and then had to spend the rest of the afternoon recovering from the exertion). I mean they are weaning him off of the morphine drip, as well as round the clock oxycodone; he is still having pain in his mouth, is unable to eat and can only drink about 6 ounces a day (as a result, he is still on IV fluids); and he is still having excruciating gastrointestinal pain (I will just leave it at that). Parrish is still receiving blood transfusions of platelets about every other day, as well as infusions of magnesium and potassium to regulate his electrolytes. He is beyond thin and extremely pale (which for Parrish is more like translucent). For the first time in a week, he actually wanted the TV volume on. Before now, he has just been staring at the wall, not wanting to watch anything, read anything or talk. Earlier this morning, he was trying to order something on his laptop and kept having to put his head down, too exhausted to even type (and yes, I offered to take over, but was met with a glare). Now, he is back asleep.

Perhaps the most disturbing thing is Parrish's personality. The last two weeks have been brutal for him, and he has experienced pain like I can't imagine. I am not sure if it is the pain or the morphine that has transformed his personality, but he has been downright mean. Edgy, agitated, mad...not the typical words a person uses to describe Parrish. He seems a little better today, but he hasn't been himself to say the least. The nurses promise me that this mood swing will pass and that it is common in transplant patients. Soon he'll be back to his old self, they say. But until then, the boys definitely can't be around him.

Just walking over the threshold of our house requires more energy than Parrish has. I get that Parrish isn't going to be able to pick up the boys or go on a walk with them or even help with baths and bedtime, but he is going to have to be able to smile, look excited to see them, and at the very least, engage with them for five minutes. Right now, that isn't feasible. Parrish can't get up the stairs to our bedroom unassisted. He can't stand up to take a shower. He can't get in and out of bed or back and forth to the bathroom with ease (or at times, at all). He can't eat. He still gets sick at his stomach most days. He can't be left alone...at.all. I guess in my mind, and because until this week I hadn't been told otherwise, I thought at discharge, a patient was just a little stronger, not 100%, but better than Parrish is now. 

And, after discharge, Parrish will be back in the outpatient clinic everyday for a while. There, they will give him blood transfusions, electrolyte infusions, fluids, and more as he needs them. They will draw blood each day, see what his labs look like and go from there. There is at-home monitoring that I will have to do for Parrish (daily temperature reads, dietary restrictions, fluid intake and output, and more). And there are a variety of restrictions relating to what he can do, where he can go and who he can be around. I am sure Parrish will be really bummed to learn he can't help with any lawn care, housework, or food prep for quite a while (so some things won't change!). Until Parrish's platelet count reaches and remains at 50,000, he will be at increased risk for bleeding, so there are other activity restrictions relating to that count (for example, no driving). 

I have mentioned before that the pre-transplant counseling that UAB provides is beyond sub-par. However, the in-patient nursing here has been amazing, and the discharge counseling wonderful. I adore Parrish's nurse and would really like her to go home with us. I just wish I had been given all of this information on the front end, months ago. I am someone who wants all the facts (maybe it is my legal training). I want to know the reality because then I can come up the tools to fit or fix that reality. I don't like to be surprised or scramble around. I am big on preparation, especially when it comes to protecting my family. I could have used a little more pre-transplant prep.

Even Parrish, who is all about pushing through and getting home, told the doctor yesterday that he was in no way ready to go home. That says it all to me. So, we have both voiced our concerns (did you ever doubt that I would fail to communicate my concern to someone?)...and we have been assured that they won't kick Parrish out before he is ready. But, we are moving in the direction of discharge. I have watched the required video on life at home with a transplant patient; I have met with the dietary clinician; this afternoon, I met with our nurse for detailed home life instructions; and tomorrow, I will meet with pharmacy to go over the at-home medication protocol. At the same time, my mom is working on the checklist for getting our house patient-ready. If there is a discharge test for the caregiver, I will pass it with flying colors, I tell you.

Today, please pray for continued improvement for Parrish...more strength, more stamina, more eating and drinking...and for peace for all of us as we enter yet another phase of this journey.

Much love,

Molly

Real Improvement

Parrish showed some improvement yesterday, but it was a day filled with another blood transfusion (of platelets), more morphine, a new antibiotic, increased fever, and continued pain, albeit somewhat less. Today, however, Parrish is showing real improvement. His white blood cell count is over 1,500, and he has been able to drink some liquids and even had a little bit of chicken broth. He is dressed and sitting in a chair. Huge! Granted, he is still on a continuous morphine drip...so clearly, he isn't pain free. But, his pain is manageable, and he is regaining some strength. Still a long way to go (despite the fact that people around here have started mentioning the "D" word...discharge). I've got news for them though, Parrish isn't ready to go home. Let's celebrate improvement today...let's celebrate sitting in a chair....let's celebrate sitting up, having eyes open (at times) and carrying on a short conversation. Let's not jump ten steps (or even a few days) down the road to discharge, because home brings a whole new set of challenges that I don't yet have the energy to face. Not all of us have had morphine to dull the searing pain of the last ten days...

So, here is to a day (and more days) of continued improvement!

Much love,

Molly

Moving in the Right Direction

Some improvement today! Parrish has actually spoken a few sentences and has had a couple sips of a milkshake. Yes, in our world, that constitutes improvement. At the very least, it is movement in the right direction. Overall, he seems to have a bit more strength and not be in constant, excruciating pain. Granted, he is on serious pain medications (including the morphine drip and pump), but pain medication hasn't seemed to help the last couple of days. So, even if today's minor relief is medication-induced, we'll take it.

Parrish's white count is up to 230. It looks like he hit bottom at around 100, and hopefully we will continue to see a slow increase over the next few days. As those numbers improve, so should his fatigue, as well as the very painful skin issues he is having. Once that count gets closer to 500, his numbers should increase more quickly. In addition, at 500, the doctors will start looking at what types of white blood cells he is producing. Neutrophils are one type of white blood cell and the type that is the first line of defense against infection in the body. Parrish has to have a neutrophil count of at least 500 before the doctors will even discuss discharge (not that we are anywhere near discharge, but some of you have asked). 

Parrish has lost almost 20 pounds since he got here. He was already on the low-side of his normal weight, so the weight loss is pretty significant. When you can't eat for a week, I guess that is what happens. A pretty extreme diet plan, if you ask me. They are keeping him hydrated with fluids, and hopefully as his mouth and throat sores improve, he will be able to tolerate food. Of course, it will take a long time for his taste buds to come back, so even once the sores are gone, food and drink won't taste like they are supposed to. 

Parrish has also been suffering from a busulfan rash for the past couple of days. Busulfan (one of the chemos used) can cause pretty terrible skin issues in a few patients. Wouldn't you know that Parrish is one of those patients. It causes a very painful, raw-skin type rash. It is awful. The topical ointments and the morphine finally seem to be helping some with that pain, and the doctor is adding another IV medication today to see if that will give more relief.

Parrish has a new fixture in his hospital room...an exercise bike (circa 1992). Because of the toll the treatment takes on your body, it can take patients a long time to regain stamina. They encourage patients to don a mask and walk laps around the unit, IV pump in tow (20 laps equal a mile). Since Parrish hasn't even gotten out of bed in a week, except for a shower here and there, he hasn't been pounding the BMT pavement. So, they brought him an exercise bike. Not sure when he'll be up for giving it a whirl, but maybe I'll test it out. A blast from my middle school past. As a side note, the record for miles walked around the BMT is 60. Competi-Molly is urging Parrish to blow that record out of the water. So far, I just keep getting blank stares. 

As I watch Parrish sleep, it is sort of hard to imagine that this, right now, is progress. If he were allowing anyone to visit, y'all would probably have me committed to the psych ward, because it sure doesn't look like he is doing all that great. It's all relative, though (isn't everything in life). I showed him a picture of the boys this morning and he smiled...progress. And a glimpse of the Parrish I know and love. Once his infectious laugh returns (and he starts cracking some jokes), I'll know we are in the home stretch!

Much love,

Molly

Ready for the Flip Side

Parrish continues to have a rough go of it. Yesterday, he didn't even get out of bed. I am trying to get him up this morning to shower, but so far, I haven't had much luck. His mouth and throat are causing unbearable pain. They have given him what looks and acts like the suction straw at the dentist's office. That way, he can suction the saliva out of his mouth, rather than swallowing it. In addition, he has a mouthwash type substance that has lidocaine in it to numb his mouth. They have also switched all medicines to IV, because he is not able to swallow any pills. Food and drink are a non-starter, so they continue to have him on IV fluids. He is on round the clock pain medicine to try and help get him through this period. He hasn't yet started the morphine drip/pump, but that is the next pain management step. 

Overnight, his platelets dropped to an unsafe level, so he received a blood transfusion this morning. The fear if platelets get too low is that there could be internal bleeding that the doctors can't see. So, the transfusion of platelets will hopefully boost Parrish's levels up to a safer place. 

He spiked a fever yesterday, which is expected, and is a sign that the stem cells are engrafting. That is a good thing. However, because of the fever, they drew blood cultures and did a urine analysis. Those came back negative for any infection. Of course, they will still keep Parrish on his two IV antibiotics and IV anti-viral medications to prevent any infection from starting. They will do a chest x-ray in a little while to make sure there isn't any fluid in his lungs.

I really can't imagine the pain and fatigue that Parrish has right now. This is one of those times when there is literally nothing I can do. No picture of the boys, no funny story, no food or drink, no words of encouragement, literally nothing (not even medicine, it seems) can help. My hope is that he is getting enough pain killers that he won't actually remember how traumatizing these few days have been. Just watching him suffer is almost more than I can bear. I won't lie, it is truly physically assaulting to see someone you love suffer like this. I can't even really find the words to describe it. My heart goes out to those who have watched loved ones suffer for years on end, because I have only had to witness it for several days (days that feel like years). I am not sure how people do it when there is no end in sight. At least with Parrish, I know that it will get better, even if it seems somewhat impossible at this very minute. Intellectually, if not emotionally, I recognize that his pain and suffering are temporary, and that on the other side of this, he will be laughing and smiling and eating and drinking and enjoying life. That day cannot come soon enough.

As always, many thanks for all of your thoughts, prayers, words of encouragement and love.

Much love,

Molly

Hanging On

Parrish is hanging in there, but not by much. His white count has dropped to 200, and you can tell (for comparison sake, normal is 4,000 to 10,000). His white blood cell count will likely drop even more before the week is through. Parrish is a kind of tired that I haven't seen before. He is required to get out of bed and take a shower each day, and other than that, he doesn't get out of bed. And we all know Parrish is typically chatting and cracking jokes, but right now, he doesn't even attempt to carry on a conversation. Sometimes he wants the TV on, but mostly, he just has his eyes closed, whether he is sleeping or not. Good thing I am comfortable with silence!

Because the high dose chemo kills everything in your body--the good and the bad--it kills all the good bacteria in places like your intestines and your mouth. This wrecks havoc on a body. As a result, Parrish's mouth is breaking down. This means that his mouth and throat feel totally raw, and he is getting sores in those areas. So, even if he had an appetite (which he doesn't), eating is so painful and swallowing miserable. Just a bite takes a ridiculous amount of will power to get down. The doctors have all patients do a very intense and specialized mouth care routine to help with these issues, but it doesn't eliminate them. Parrish has lost a lot of weight because he can't eat or drink, and the doctor has put him back on fluids (they take patients off of fluids after transplant and only put them back on if the need arises). Yesterday, he began to get dehydrated and was having some low blood pressure issues, so fluids were definitely needed. In addition, the doctor has Parrish on replacement magnesium and potassium. The high dose chemo messes with a patient's electrolytes, so oftentimes, a patient needs replacements of certain nutrients, thus the magnesium and potassium.

So far, Parrish's platelets and hemoglobin have stayed above the threshold for a blood transfusion.They have dropped a good bit, but not so much as to need additional blood. That is good news.

Everything Parrish is experiencing is normal for BMT patients, and nothing that the doctors and nurses are overly concerned about. But, even though it is all normal, it doesn't make it easy. Parrish is weak and hurting, and there is nothing any of us can do. It isn't something he can snap out of or be pushed to just get over. It is what happens when drugs completely destroy a person's immune system, but it doesn't make it any less awful. You can read and research and attempt to learn and memorize every last detail of what can and will happen, but until you are in the middle of it, you can't comprehend what it will be like or feel like. And of course, every patient thinks it won't happen to them...that they will be the teeny tiny percentage point that has no side effects. So, the side effects weaken a person's mental, as well as physical, stamina. 

We are two days into what is supposed to be the hardest week. I am hanging on and focusing on getting everyone through this week. Parrish, on the other hand, is hanging on right now, getting through this hour, this moment, this next set of vitals, hoping for a brief period of feeling better. I'm not sure he can see past today. But, that's where we come in. Parrish's fan club can encourage him not only to get through today but to plan and dream for better days ahead. I know that so many of you out there are quite literally cheering for Parrish every step of the way. If you have a moment in the next few days and feel so compelled, send Parrish a quick email or text (he is not up for talking on the phone) or leave a blog comment that I can show him. Our prayers, our thoughts, and our well wishes just might help give him the mental fortitude to push through this terrible week. 

As always, so much thanks and love to all of you-

Molly

Day Zero

Transplant Day (referred to as "Day Zero") is here. It is called Day Zero because they count forward from today. Once a patient gets to Day 100, he or she graduates back to his or her oncologist for regular follow up. Parrish's transplant should start around noon today. The nurse will thaw the stem cells in Parrish's room until they are the consistency of a slushy (sort of like an Icee, the doctor said....talk about ruining cherry-flavored Icees forever...). After that, the nurse will hang the bag of stem cells just like a regular IV, and the cells will enter Parrish's body through the Hickman catheter in his chest. Parrish will receive four bags of stem cells. How many bags a patient receives is determined by the volume of stem cells collected from the patient, as well as a patient's body mass, weight, etc. For some patients, it can take many days to collect enough stem cells, so they might have twelve bags of stem cells, but not a high density of cells in each bag. Other patients might only have a couple bags, because there were so many stem cells in those two bags. How long the transplant takes depends on how many bags of stem cells must go into the body. Parrish's transplant will likely take about three hours, and he will be hooked up to monitors the entire time to make sure his vitals remain stable and that he isn't having any adverse reaction to the cells. (There are a variety of side effects that can potentially occur, so he will be closely monitored throughout today and tonight.) Right now, they have increased his fluids and then will give him a couple Benadryl doses, as well as a steroid dose, to minimize adverse transplant reactions.

Most people say that Transplant Day is rather anticlimactic. You expect to feel something...or you expect to at least feel better. That is definitely not the case. It really just feels like any other IV that you have had. And, you still feel terrible (and likely will feel way worse before you feel better). So, it is sort of a weird day. 

Everyone has asked how Parrish is, and honestly, he is having a rough go of it. Not really anything unexpected or that we weren't warned about, but not sure anyone can prepare you for this. Parrish's white counts have plummeted, so he is completely exhausted. A kind of tired that for most people is incomprehensible. He can't even really carry on a conversation or keep his eyes open. And he is, shall we say, a little testy. With the fatigue comes physical weakness. He has to take a shower every day, and just that totally wiped him out. He couldn't even stand in the shower. The doctor has been able to manage Parrish's nausea with meds, but he just has no appetite. I did get him to eat a couple bites of sorbet this morning, but that has been about it for the last few days. He is hanging in there, but he is ready...really ready...to start feeling better.

So, prayers today for a smooth transplant, lots of healthy stem cells and a speedy recovery.

Much love,

Molly

****Update at 3:30 pm: The transplant is finished. Parrish has pretty much slept through the entire process (and is still sleeping). Now we are just in "wait and see" mode. Many thanks for all the thoughts and prayers today!

Countdown to Transplant

Everything is moving forward for the transplant tomorrow. Parrish received his final dose of chemo last night, and today is a "rest" day. What that really means is that it is a day full of pre-meds for transplant.  They will continue to give him the IV vancomycin, fluids, anti-nausea meds (steroids, zofran, and ativan), and also lasix. They put a preservative in the stem cells when they freeze them. This preservative can cause fluid to accumulate in lungs and can cause kidneys to get overloaded. So, they want to use the lasix to get fluid out before the transplant. Then, they will increase Parrish's fluid after transplant to try and help flush the preservative out of the body. Empty the bucket and fill it back up, in very non-medical terms.

Parrish's blood pressure has stabilized after Tuesday's roller coaster. Everyone involved was very unnerved by Parrish's reaction to the etoposide. As a bystander, it was terrifying, especially as his pressure continued to drop and nothing seemed to be working. The doctor said that we can't have another day like Tuesday, and I totally agree. Yesterday and today, Parrish has just felt pretty terrible. Really terrible, if I am being honest. Blood pressure is better and the nausea is more controlled, but he just feels awful. He is totally exhausted, weak and really has no appetite, just taking a shower wore him out. He seems sort of surprised by how bad he feels. He breezed through his cancer treatment earlier in the spring. And, I think his response to this high dose chemo has sort of thrown him for a loop. In his mind, I don't think he was prepared for this sort of sickness, and it is shaking his spirit.

So, today, please pray for a renewed spirit for Parrish, for peace that passes all understanding, and for strength as he heads into an important day tomorrow. 

Much love,

Molly

Game Face

Parrish finished the busulfan yesterday. Today, he has a dose of etoposide (which is already running) and cytoxan. The etoposide is a four hour infusion, and he is hooked up to heart monitors, blood pressure machines and more during the four hours. This means he is bound to his bed for a while. Then, this afternoon, he'll have an EKG before the doctors sign off on his cytoxan dose. He'll get his cytoxan tonight around 8 pm. One of the nurses said that the busulfan is like sweet tea compared to the doses of cytoxan and etoposide. Parrish didn't think the nurse's comment was all that funny. In Parrish's mind, I think he thought he just had to make it through the busulfan. 

Parrish continued to do well over the weekend. We had a visit from his sister and her husband which was good, and all the nurses kept commenting that Parrish didn't even look like a patient. Yesterday, he was a little more puny. His color was off, he was fatigued and he just didn't feel good. Today, the etoposide got the best of him, and he has had some nausea and vomiting. He isn't having a great day. Maybe that nurse was right...

The doctor has decided to put Parrish back on IV antibiotics (vancomycin). This is pretty typical protocol for transplant patients. It is completely prophylactic--they are using it merely to prevent infection as his white counts drop. He will be on this IV antibiotic starting tonight likely for the next two weeks. He has been on oral antibiotics, but they just don't carry the same punch that vanc does. 

The doctor also walked us through the next few days. As I think I have described before, the "transplant" is really like a blood transfusion. On Friday, the nurse will hang a bag of stem cells that will go into Parrish's body through one of the catheters on his external line (transplant day is referred to as "day zero"). It is somewhat of a non-event, really, just an hour or so and the stem cells are in. According to the doctor, most patients feel the worst starting about two days after the transplant, with the height of symptoms coming at day 6 or 7 post-transplant. She was quick to say that while some patients have literally every side effect possible, there are some patients that just sail through. The staff will comment that it is as though they forgot what they were here for. The doctor said she is convinced it is all mental. As is the case with most things, if you've got your game face on, anything is possible. 

I am a firm believer in the game face...it is why I never, ever went into an exam disheveled, bleary eyed and disorganized. I was showered, put together, bag packed and back up pens or computer battery on hand. Even if I was sure I was going to fail whatever exam I happened to be taking, I was going to look like I was going to ace it. More often than not, my game face fooled even me into believing I could do this, that or the other. Obviously an exam pales in comparison to chemo and a bone marrow transplant. But, the game face idea is the same. It is why Parrish wears real clothes, not a hospital gown, and he is going to put on shoes, not slippers. If you don't look like a patient, you won't feel like a patient. It is why he constantly has music streaming and is learning to play chess while he is here. It is why he wants me to send him links to vacation spots where we hope to take the boys someday. Game face on.

This is not to say he won't have side effects or that we will be surprised by them. It is not to say that there won't be really hard days that are physically and emotionally draining. There already have been. And, in fact, today is one of those days. We just don't want to dwell on the bad. Instead, we'll both keep our game faces on, focusing on the end result...on Parrish walking out of this unit into a life that is healthier, stronger and richer because of the journey.

Much love,

Molly

***Update at 4:30 pm: Today has turned into an especially hard day. Parrish's blood pressure has been very low, as low as 74/32, but hovering in the 80s. He has had continued vomiting, dizziness and is really, really pale. His heart rate has also been fluctuating and his oxygen levels were low (but have now come back up). In addition to fluids and Zofran, they have given him IVs of Ativan, a steroid and now an additional antibiotic, all trying to combat the side effects of the etoposide (which can cause this in some patients). A pretty scary day for all involved. Please say prayers that the side effects will wane and that Parrish will get some relief.

***Update at 8:30 pm: Things finally, finally seem to be trending in the right direction. Parrish's pressure got down to 41/28...scary, scary low. And every time he moved, he would vomit (of course, with that kind of pressure, he wasn't doing much moving). But now, he is actually sitting up and even cracking a few jokes. Banks is credited with the rise in pressure....once he arrived, Parrish totally perked up! Clearly I wasn't all that exciting. The nurse just hooked up tonight's chemo...you know, right as Parrish starts feeling better. But, it is a different drug, so we are hopeful that he won't have the same reaction as earlier. Many thanks for all of the prayers today! 

Weekend Report

Just a quick weekend report. Parrish is doing well. He has the high dose chemo today, tomorrow and Monday. Then, he has two more doses of Cytoxan and Etoposide (two other chemos) on Tuesday and Wednesday. This part of the treatment is typically done outpatient, so they really don't anticipate many side effects right now. The bad part should come mid- to end of week next week. He is just hanging out and watching a lot of the British Open this weekend. Could be worse, I guess.

Ivey has had a hard day (a really hard day, which translates into a hard day for all of us). I think he just needs to see where Parrish is and that he is okay. So, I ended up bringing him up to the BMT unit to visit Parrish. Right now, they are eating chocolate chip cookies, and Ivey is dancing for us. I am praying that this visit will give Ivey some peace. There might not be another opportunity for one before things get bad, so we sort of felt like it was now or never. I have no idea if this is the right or wrong thing to do. Just trying to trust my mother's instinct that this is right for right now.

Hopes and prayers for a peaceful and happy weekend for everyone!

Much love,

Molly

Settling In

Parrish is in-patient on the BMT unit and settling into life here for the next few weeks. He checked in yesterday afternoon, after a very emotional goodbye at home. Nothing is more heartbreaking than watching your husband so visibly upset about leaving his sweet boys for a month. We attempted to keep it upbeat for the boys, but Parrish's pain was written all over his face. And getting in the car and driving away was just awful. Awful.

It wasn't just the leaving, of course. It is also the fear and worry about what is going to happen over the next few weeks. As one of our favorite doctors explained last night, the high dose chemo (busulfan) is very different from the regular chemo that a cancer patient gets. In normal chemo treatment, a patient's white blood cell count gradually drops over a ten day period. It gets low (say 1200), but it doesn't bottom out. And, they treat the low counts with drugs that help your stem cells produce new white blood cells very quickly. So, the recovery time is relatively quick. With busulfan, a patient's white blood cell count drops to zero and it drops very dramatically, over the course of just a couple days. In addition to killing all the white blood cells, the drug also kills all of your stem cells. So, they can't give you any medicine to help your stem cells reproduce or produce new white blood cells. You have no stem cells. If they weren't transplanting stem cells, a patient would die from this level of chemotherapy. Thus the need for a transplant. When they transplant the stem cells, it is then a waiting game...waiting for the stem cells to get in the body, reproduce and begin to create white blood cells. During this time, a patient feels pretty terrible and is at great risk of infection. Even after a patient is discharged, it can be six months (or longer) to completely recover. 

Busulfan also carries risks above and beyond just the blood count issue. Too much of it and a patient goes into organ failure. They start with a test dose (that Parrish had on Tuesday). During and after that dose, they closely monitored Parrish's stats--drawing blood several times over the course of three hours after the dose. The doctors want to see how long it takes the chemo to get out of the bloodstream. They take all of Parrish's stats and plot them on a graph, which then tells them how strong to make the next dose. This monitoring continues during the entire treatment. It is a fine line...they have to give him enough of the busulfan so that it kills what it is supposed to, but not so much that it causes permanent damage (organ failure, cardiac arrest, etc....as in, serious damage). So you can see why we are worried and a little bit edgy about the next week. Nausea, vomiting, mouth sores, nose bleeds, hair loss, even risk of infection...these aren't necessarily pleasant or even insignificant. But they start to feel that way when you are advised of the major complications that could occur. Needless to say, even though they encourage family members not to spend the night in the BMT unit, regardless of where I am sleeping, I will be waiting on edge for a phone call from the nurse.

That is one of the reasons that my mom came back yesterday (well before she medically should have). She couldn't not be here, pain or not. She might not be able to lift or even stand for long periods of time. But, she has to be here because of the "what ifs" that I don't have the luxury of not thinking about. So, thankfully she is here. The boys are thrilled, and she got here just before I left with Parrish for the hospital. So, her arrival was a much-needed distraction for Ivey and Campbell. (Many thanks to Aunt Cathy for driving her back!)

Many of you have asked what or how we have told the boys. Parrish and I talked to them on Monday night over post-dinner ice cream sandwiches on the porch. Obviously Campbell doesn't really understand it all, but we talked to Ivey about how Daddy was going to have to go to the hospital for a little more medicine and how he was going to have to stay there for a little while. His response to our discussion was that he wanted to go to Emme and Guh's house in Memphis right.now. And then he listed all the toys he wanted to play with there and all the places he wanted to go right.now. Classic Ivey. He hasn't stopped talking about it either. It is his way of saying (I think) that he needs to escape to a super happy place for a little while. He gets that Daddy is going to the hospital, and he gets that life at home is going to be different...and that, try as we might, it is going to be a little bit sadder. So, he wants to go to Emme and Guh's, where it is, at least in his mind, all fun and games, all the time (which it really is). Depending on how things go with my mom's neck/back and how things are here, I am hopeful that we will be able to let the boys escape to Memphis soon.

Regardless of whether they flee to their happy place for a little while or not, it is going to be a rough month. There is just no way around it. A therapist told me that the best thing I can do for them is just to recognize that. Regardless of their age, the boys are going to feel the loss of Parrish at home. Of course children are resilient...but please, please don't tell me that. As the therapist said, my concern is not that they turn into axe murderers as adults because their father had cancer. My concern is the present. Resiliency really doesn't matter. The present does, and it is just going to be hard. According to the professional (I take no credit for the thoughts), the most important thing I (and others) can do for them is to provide consistency, compassion and connection. Consistency means being in familiar places, doing familiar things, seeing familiar people. This isn't the time to ship the kids off to stay with a random aunt in a place they have never been. This isn't the time to try out a new babysitter or change schools. Compassion is recognizing that this is tough for them. They might not be able to articulate it in words, but we should watch for cues in behavior or needs or wants and let them express their feelings however they see fit. Connection is making sure they maintain a relationship with Parrish during this time, albeit a long distance one. My kids aren't the best at FaceTime or Skype...it can tend to upset them more than anything. But, there are other ways to stay connected. A friend whose husband was in the hospital for awhile said that she would pass fist bumps back and forth between her husband and the kids. A quick and simple reminder that daddy was thinking about them. The therapist suggested that Ivey create a weekly book of his activities that I can bring to Parrish--we can print off photos, Ivey can draw pictures or dictate what I should write. And, on the flip side, I can take pictures of Parrish's hospital room, his nurse, his doctor, etc and show Ivey where Daddy is and what he is doing. Daily reminders that Daddy is still here and thinking about his boys, which of course he constantly is.

Right now, Parrish is almost done with today's busulfan dose. The nurse is about to don the hazmat gear to disconnect his IV. Ironically, the nurse has to wear special gloves, a thick protective gown and goggles when handling the container with the high dose chemo. And, the medicine comes in a special glass container, not a plastic drip bag. They don't want to risk any of the toxic chemical leaking out. Of course, then they hook Parrish up and put this chemical directly into his blood stream. The irony is not lost on us for sure.

Many thanks for all the thoughts and prayers as we head into the next phase of this journey. We appreciate them more than you will ever know.

Much love,

Molly