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