Three Peas in a Pod

My mom got the little boys matching ski caps so they could be just like Daddy!

It's the little things that bring smiles these days...and I'm not sure who was more pleased with the matching black hats, the boys or Parrish. (As a side note, I've been trying to get a perfectly cute picture for days...this picture of the boys dirty-faced and half-dressed will have to do...no time for "perfect" anymore!)

As you can tell from the above picture, Parrish is pale. He is weak. He is tired. His blood work today proved all of that. For those of you medical folks (or medical wanna-bees, myself included), Parrish's stats are: Hemoglobin (9.5); Platelets (60,000); White Blood Cells (1,100). For a frame of reference, normal Hemoglobin should be 14.0 to 17.2; normal Platelets should be 150,000 to 400,000; normal White Blood Cells should be 4,000 to 11,000. What causes this dramatic drop? Chemotherapy. This treatment doesn't only kill cancer. It kills everything else in its path. It's why no one calls chemo a cure. It is poison. And, the goal is to prevent it from poisoning your entire body long enough for it to kill the cancer cells. So, the blood count drops aren't unexpected, but they are very low. The doctor called tonight and wants to see Parrish back again early Friday morning. He will do more blood work, and be able to determine if Parrish needs a blood transfusion on Friday afternoon. He doesn't want us heading into the weekend at the current levels, risking some sort of after-hours emergency.

How nice that even at a world-renowned hospital like UAB, your doctor still calls you at 6:30 pm to give you blood work results, to ask how the patient is, to comfort you when he's giving you news that just isn't all that great. As a lawyer, in a somewhat similar client-driven industry, I just hope that I give my clients the same sort of comfort, that I make them feel as important as this doctor makes me and Parrish feel.

The reality of Parrish's blood work is that, as we knew, Parrish just has no immune system. This means he is forbidden from grocery stores, Target or Walmart-type stores, church...anywhere with large groups of people. He can't be around anyone who has so much as a sniffle. He can't shake hands, open doors, or share food. That being said, we are going to have to be rather militant about visitors in our house. Unfortunately, the doctor has told us absolutely no children--other than our own--can be in the house. This is especially difficult in our neighborhood, because it is filled with young kids who we absolutely adore. Our neighborhood has an "open door policy" you could say...which means, if the door is unlocked, you can walk right in. I hate that our house is going to have to change that policy. Of course, we welcome other visitors, so long as you are well and so long as you haven't been exposed to others who are sick. We aren't trying to be rude; we just cannot risk infection for Parrish.

These new procedures will mean working closely with Ivey's preschool to monitor the risk of infection. It will mean lots of additional hand-washing and ridiculous amounts of hand sanitizer. Campbell already reaches for the bottle of Purell at any chance he gets. I'm probably creating an OCD clean freak! Of course, this doesn't mean that Parrish can't go to work. In fact, it is important to Parrish to continue working as much as he can--from both a financial and mental perspective. Honestly, I think work is the most normal thing Parrish has these days. (It also might be more sane than our house, given that the boys are at home most days. Not only is it an escape from feeling like a cancer patient, it's an escape from the chaos of two toddlers!)

Aside from the blood work, the other challenge is weight gain for Parrish. Since January 30, 2013, Parrish has lost 18 pounds. And, he had already lost additional weight prior to that time. He is skinny. I told him today that we were going to have serious marital problems if he got anywhere near my weight. I was only half-kidding. In all seriousness, though, the doctor said that he has to gain weight. I'm well-versed in nutrition and diet, so don't worry, I am working on keeping him chock full of calorie-packed, nutritious foods.

Sometimes, it seems like our life before cancer is far, far away. This new normal can be, at times, difficult to absorb. But, even with all the changes around here, pictures of my three smiling boys remind me that no matter what, some things will never change...I will never stop smiling when my three boys smile, I will never get tired of pajama dance parties with Ivey and Campbell, and we will never stop having indoor car races (see below). Sure, Parrish can no longer participate in the races, but he is cheering for the boys from the sidelines, just as all of us are cheering for him.

Life As We Know It

Life as we know it now is so very different than it was before January 30, 2013. It doesn't seem that long ago, when you look at the amount of days, but it feels like a world away. On that Wednesday afternoon, I was at work, trying to wrap things up while researching vacation homes in Rosemary Beach. We were trying to plan (or dreaming about) a beach trip in September. At the same time, I was stressed about how much our tax bill was going to be and making a mental check of my seemingly never-ending to-do list. Life as we knew it then sure didn't seem easy. In fact, it seemed pretty hard. Parrish and I had busy, stressful jobs. We had two amazingly wonderful children. And there was never enough time in the day, so it seemed, for the needs of home and the needs of work. There were bills to pay, and it felt like never enough money to pay them. I worried because I didn't host enough play dates for the boys or have enough "teachable moments" with them, I didn't give enough back to the community, didn't see my friends as much as I should, didn't have time to exercise or eat like I should, didn't have enough date nights with Parrish, didn't tell my family enough how much I loved them...the list could go on and on.  

And now, well, all those same worries, stresses and concerns are there. They still seem significant. And yet, those worries have fallen far down on the list because of our new reality. Don't get me wrong. I have friends--lots of them, actually--who have even worse realities. They have even more terrible tragedies going on in their own lives. I don't begin to pretend that a husband with cancer is the worst thing that can happen to a family. I'm not sitting and wallowing in my misery, thinking poor me. Trust me, I'm not. But, I also don't think it does anyone any good to pretend that everything is just fine. It doesn't do anyone any good--especially Parrish--to pretend that he is doing great. Pretending is hard. Pretending is exhausting. Pretending is debilitating. And, Parrish doesn't have any extra energy to spend pretending. 

Just before all of this hell started, Parrish and I heard a speaker that our church brought to town. After listening to Brene Brown, I couldn't read enough of her stuff. I was--and still am--pretty obsessed with her. If you haven't heard of her, check her out. She is amazing. She will make you think. She will make you squirm. She will make you want to be more.  Brene (yes, I consider us on a first name basis) talks a lot about daring greatly and living wholeheartedly, both of which require being vulnerable.  She talks to little old church groups; she talks to Fortune 100 companies. Her message has broad applicability. I won't begin to paraphrase what Brene writes, but after hearing her, I made a commitment to be more vulnerable. I sort of thought, oh, I'll be more open and honest with my close friends about what I'm struggling with. Little did I know that I would soon be sharing our family's journey on a blog. I mean, I'm not even on Facebook (insert: shock and horror!), and now, I'm opening my soul on the Internet. Of course, being vulnerable isn't about over-sharing, so I won't share everything on this blog. But, I feel called to be honest about this journey--to be vulnerable so that Parrish, our family and others going through similar struggles know that it's okay not to be fine or great or awesome. That it's okay to think that the journey isn't so wonderful or inspiring. That it's okay to wish that this weren't happening. So, this post--and others--might make some of you squirm. My vulnerability might at times be too much or make you question my mental status (don't worry, there are days I question it too). But, I can promise you that I won't pretend. I just don't have the stomach for that right now. 

Which is why I can't pretend to be celebrating the fact that Parrish's cancer is Stage 2B "Bulky" and not Stage 3B. I know that some of you really want to celebrate and are concerned that Parrish and I aren't right there with you. Some of you wince when I say that Parrish isn't having a great day. A close friend said that the worry in my voice made her think I didn't believe Parrish could beat this. Please don't mistake my vulnerability for lack of faith. I am so thankful that Parrish has Stage 2B Hodgkin's and not Stage 3B. But, I also recognize that the lesser stage changes nothing about our current reality. I relish Parrish's good days because I have lived through some bad ones and know that there are even worse ones to come. I truly believe that Parrish will beat this cancer. I believe it with every fiber of my being. But, I also understand the pain and suffering that all of us, including my children, will have to endure for that to occur. I worry about the scars that cancer leaves behind. Not the physical ones, necessarily, but the emotional ones. 

I worry constantly about the boys. Yes, I know--children are very resilient. So many of you have told me that over the last couple of weeks. Honestly, that gives me very little comfort. I'm not worried about whether Ivey and Campbell are going to grow up and be normal 15 year-old boys. I'm worried about right now. I'm worried about the fact that a three and a half year-old has completely regressed in every way relating to potty training. I'm worried that he can't sleep alone . I'm worried that he tells me that he worries about Daddy and doesn't want him to get that bad medicine at the hospital. I'm worried about an eighteen month old who hasn't yet had a chance to learn that Daddy is the best fixer, the best builder, just the best. For him, Daddy is tired and sleepy and hurting and can't play or even hold him. 

I worry about Parrish. Parrish is a shell of the person he used to be. And, I don't mean that he has lost a bunch of weight (which he has) or that he looks gray (which he does). I mean, I worry about where the person I married has gone, because the cancer seems even to have taken his personality. He has to spend every last drop of his energy just to get out of bed everyday, just to function. There is nothing left for conversation, witty banter or his infectious laugh. Honestly, I miss my husband. I know he will return, but after a night like last night, that can seem like a long way away. In full honesty mode, Parrish had a really bad night. He passed out about 10 pm walking back to bed from our bathroom. He collapsed in a heap on the floor, and I had to pick him up and get him back into bed. I had to call the after-hours number and decide whether or not I needed to take him to the emergency room. I spent the entire night watching and waiting. I want to help him, to take away his pain, but the truth is, I can't.

Don't get me wrong. I am not doing this alone. I can (and will) write an entire post about all that my mom is doing. We wouldn't be surviving without her. If anyone has to go through some sort of tragedy in life (and I hope you don't), I can only hope you have someone like my mom with you. She was back at our house in seconds last night, and not because I asked her, just because she knew I needed her. She is truly our life line these days. And, the outpouring of support and love from other family and friends is truly unimaginable. That is where I see God in all of this. For me, in my faith, I believe that God's heart is breaking right along with mine. He can't bear to see Parrish suffer, can't bear to see my little boys hurt, can't bear to see me trying so hard to fix it all. And so, He sends family. He sends friends. They are His angels on earth. We couldn't even imagine surviving the last three weeks without all of you...life as we know it now is so much richer in that respect. 

   

And don't worry, I'm not all vulnerability and no fun. I haven't lost my ability to see the beauty in small things. Quite the contrary. Just look at the smiles in the pictures below and try not to smile yourself. It's impossible, I promise. As you can see from the pictures, life as we know it now has a lot more hats...and Campbell thinks that is pretty fun!

Round One is Done

We are getting out of the hospital a day early! Since the doctors were able to get the chemo started Monday night, the treatment finished up this afternoon. Which means, Parrish can go home this evening. Yahoo!

Our favorite nurse just gave us a tutorial on the new rules for life at home (lots to post about that) and what to expect in the coming weeks. Parrish has had a day of feeling pretty crummy, but he perked up at the news of going home. I am hoping he can have a restful evening (as restful as it can be with two little ones around!), and just enjoy being home.

With one round of treatment under his belt, Parrish is on his way to beating this disease!

Parrish's New 'Do

As promised, a picture of Parrish's new 'do...or lack of a 'do. Pretty cute, huh? One of the nurses said that shaving your head is a major emotional step in admitting that you have cancer. I think this is such a true statement.

The first twenty-four hours of chemo have been fine...as fine as they can be when poison is being pumped into your veins, I guess. Parrish is a trooper, and we are working on staying on top of the nausea. I am also making sure he is stocked with his trusty lemon drops and lemonade.

Prayers for a restful night for all involved.

Much love,
Molly

(As a side note, this picture is from late last week...even Parrish doesn't don a sport coat and collared shirt for chemo treatments!)

Chemo Ready!

Parrish is back in his new home away from home, also known as the 9th floor at UAB. He will begin his chemotherapy regimen tonight. The regimen is referred to as "ICE" chemotherapy. This stands for the three chemotherapy drugs used: ifosfamide, carboplatin, and etoposide. He will receive these as a continuous infusion during the next three to four days in the hospital. (By continuous infusion, I mean that he will have at least one of the drugs going into the mediport in his chest at all times.) He will return here once a month for the next 4 to 6 months to receive the ICE infusions.

Before he was admitted, Parrish saw his hematologist/oncologist in clinic to go over the tests from last week. Parrish's creatinine and urine output were both better, which is one of the main reasons he could start chemo tonight. The results of the PET scan and CAT scan also came back this afternoon. The PET scan allows the doctors to see exactly where the cancer is by causing the cancerous tumors or cancer-filled lymph nodes to glow. This is different from a CAT scan which just shows where growths are but cannot differentiate between a growth that does or does not have cancer. The PET scan showed that, as we knew, the large mass on the right side of Parrish's chest is cancerous. In addition, it showed lymph nodes under the clavicle that are cancerous, as well as lymph nodes on the left side of the chest that have cancer. These other areas do not have large tumors but rather are inflamed lymph nodes (think a swollen gland). The good news is that the PET scan showed that the spleen does not have cancer cells. There is a small growth or tumor there, but it does not contain active cancer cells.

This means that because all of the cancer cells are found above the diaphragm, we are dealing with Stage 2B, rather than Stage 3B. It is technically "Recurrent Stage 2B Bulky Hodgkin's Lymphoma." The "Bulky" is added because the mass in Parrish's chest is so large. And, the "Recurrent" is because of the fact that the cancer has returned. It's a mouthful to say, that's for sure. But it is very good to be dealing with a less-advanced stage of cancer. The fact that it is less progressed doesn't change the treatment plan (the chemotherapy regimen followed by a bone marrow transplant), but it just means that we caught it earlier than we at first thought.

As of now, Parrish is hooked up to fluids to help keep him hydrated. Hydration is crucial because as the chemotherapy kills the large tumor, the dead tumor cells will be washed out of his body through the kidneys. They don't want the tumor waste to build up in the kidneys causing what is called "tumor lysis syndrome." This is one of the complications with this size tumor. Large amounts of IV fluids and a medicine that Parrish just took will help prevent this. Parrish's on-going lemonade addiction will also aid in his hydration management!

Parrish should get discharged on Thursday evening or Friday morning of this week. During the three off weeks, he will go to weekly clinic appointments for blood work. One of the biggest concerns of any chemotherapy is the effect on a patient's blood counts. They will closely monitor Parrish's cell counts, and help manage his risk of infection with these weekly check ups. As a side note, low blood counts tend to peak 10 to 15 days after a treatment. There are other more short term side effects of the chemotherapy, including nausea, vomiting, and hair loss. Of course, Parrish has already taken care of the hair loss...he got his head shaved on Friday (pictures to come, I promise!).

Whew...lots of information to digest and probably more questions raised from this new information. I am going to do a "frequently asked questions" post soon...

I will keep everyone posted on how the next few days go. Please pray for strength for Parrish, wisdom for the nurses and doctors and patience for all of us as we wait for these drugs to work their magic.

Much love,
Molly

Monday at UAB

We are back at UAB this morning for Parrish's mediport placement. This is an outpatient procedure done by an interventional radiologist. The procedure itself is a relatively quick procedure, but we will likely be here several hours. Then, this afternoon, Parrish has an appointment in the hematology/oncology clinic. There, we will discuss when treatment will start this week. The thought is that it will begin tomorrow, which means Parrish would be back in the hospital for the rest of the week. So, it is a full day of appointments at UAB...guess we better get used to this drill.

Please say a prayer for a smooth placement of the port this morning and for strength for Parrish. He has had a rough several days of just feeling crummy and unbelievable weakness and fatigue. The smallest activity, even just taking a shower, seems to take everything out of him. I really can't imagine what a day of procedures and appointments will do. So, I pray that he can find a reserve of strength to get through today and to carry him into this first week of treatment.

I will post more tonight when we have plans for the rest of the week.

Much love,
Molly

Love.

BROTHERLY LOVE.

Growing up, Valentine's Day...well, really any holiday...was a big deal. I still remember coming downstairs to red and pink packages, a special breakfast...love was in the air, you could say. There was always a heart treat in my lunch and a napkin with a Valentine's message on it. I know that some people scoff at Valentine's Day, but for me, it has never been about the roses and candy. Even growing up, it wasn't about what was waiting downstairs, but about how my parents made us feel. Each and every day. It was about making others feel loved. And, for me, that is what Valentine's Day is now. It is about making others feel loved. 

I won't lie and say that this Valentine's Day doesn't feel different. I have a heavier heart. Today has been hard...hard to watch people going about the normal business of Valentine's Day because things just don't feel normal around here. But, I can honestly say that I don't think that I have ever felt so loved. The outpouring of support from those around us is truly overwhelming. I have said so many times in the last two weeks that I feel like we have an army fighting alongside us. Some of you know just what to say and when. Some of you know just when to show up and how. Some of you I've never met but I know you are sending up prayer after prayer for strength, comfort and healing. At our church, at our offices, childhood friends, new friends, family friends, doctors, nurses...the list could go on and on. For most of you, I will never be able to repay the kindness and generosity you have shown our family.

I will admit that I am much better at giving than receiving love. I like to be the one coordinating others' meals or praying for others' needs. I like to be the servant, not the recipient. But, I am working on that. I am working on saying thank you and trying to figure out a way to pay all of this love forward. So, thank you--all of you. Thank you for walking through this storm with us and making us feel oh-so loved along the way.

Happy Valentine's Day!

Love,
Molly   

Good news!

A little pre-Valentine's Day good news! Parrish's bone marrow biopsy came back negative--meaning the cancer has not spread to his bone marrow. This is huge. And, it means we are dealing with Stage 3B Hodgkin's.

We also met with the neuro-oncologist today, and he said that Parrish's brain MRI is completely fine. He said the "enhancement" is nothing to worry about and that Parrish has "one good lookin' brain." Good to know.

So, two items of good news today (well three if you count the good lookin' brain information). Hallelujah for good news!

I hope everyone has a wonderful Valentine's Day!

Much love,
Molly

Game Plan

We saw the lymphoma specialist late this afternoon, and we got somewhat of a game plan for moving forward. The doctor wants to do a few more outpatient tests and procedures that will help stage the cancer and give him all the information needed to decide what chemotherapy drugs will best fight this cancer. Some of these tests will help assess Parrish's basic functions (kidneys, liver, etc) to determine the right dosage--one that will attack the cancer but not put too great a strain on his organs. Other tests will help determine the stage of the cancer, so that the doctor can determine the best chemo cocktail for this particular Hodgkin's.

So, today, they drew more blood to test, among other things, Parrish's creatinine--above all else, they need Parrish's kidneys functioning more normally before starting chemotherapy. We should have the results from those labs tomorrow. In addition, they will do a urine study on Thursday/Friday. Don't worry--those of you that really know me know that I have a slight (or some would say, significant) water obsession. I have Parrish on my water intake regimen to ensure optimum kidney function. Between my prayer warriors and 150 ounces of water a day, surely that creatinine will be back to normal!

On Friday afternoon, Parrish will have a PET scan. This will be a full body scan that will show any other lymphoma inflammation, and also be able to indicate whether that inflammation has cancer activity or not. This scan will also assist in determining exactly what stage the cancer is. In addition, if his kidneys are okay, they will do another CAT scan (which requires dye, which is tough on kidneys) in order to see the tumor more closely now that the pleural fluid is gone.

Tomorrow, we should also get the bone marrow biopsy back--this too will help with staging. In addition, it will help the doctors analyze post-chemotherapy treatments that can help with more long term cures.

On Monday of next week, Parrish will have an outpatient procedure done where they will place a mediport in his chest--this will be where he receives chemotherapy. We will meet with the lymphoma specialist, and then, chemotherapy should begin on Tuesday. All of his chemotherapy will be in-patient--meaning he will have to go into the hospital overnight. The drugs that they will be using are "continuous infusion" so he will be in the hospital 2-3 days, receiving chemo continuously through the mediport. The treatment will be once a month for 4 to 6 months. They will not be using any of the same chemo drugs that Parrish received when he was 17. This is for two reasons. One, Parrish has already received these drugs in high doses and there is a concern that he has developed a resistance (think how a child becomes resistant to certain antibiotics when they are continuously used). Two, chemo drugs are poison. They kill cancer--but are toxic to the body. Using the same chemo drugs poses toxicity concerns. Thankfully, they now have other, even better, chemotherapy options to use.

At the end of the chemotherapy treatment, and once Parrish is cancer free, they anticipate doing a bone marrow (or stem cell) transplant using Parrish's own stem cells. This is referred to as an autologous stem cell transplant, if you are googling it. This type of transplant is commonly used in lymphoma patients and has incredibly successful long-term cure results. This procedure is obviously down the road, and rather involved, but provides lots of hope for a complete cure.

There is no plan for radiation. Again, Parrish received high doses of radiation while at St. Jude. There is concern that additional radiation will cause other problems--organ function, radiation-induced cancers, etc. St. Jude has been communicating with all of the UAB doctors, and they too have voiced concern over any additional radiation.

So, while we had hoped to get the chemo show on the road this week, we understand and support the decision to wait until next week when we have a more complete picture. At every step, we have learned that this is a hurry up and wait sort of thing. Patience is a virtue that I am working on!

Again, thank you for all of the thoughts and prayers...we feel so loved and so supported by friends and family. I can't tell you how that has carried us through the last week and a half. We feel so blessed to have all of you on Team Taylor!

Much love,
Molly

Home Sweet Home

A picture is worth a thousand words...

Campbell was just as excited to see Parrish as Ivey was, but he couldn't quit doing his "happy feet" dance long enough to stand still for a picture.

Homeward Bound

Just a quick update to let y'all know that Parrish is headed home today! We are hoping to manage his pain and discomfort at home, and he will go to the lymphoma clinic on Monday afternoon.

I know there are two little boys who can't wait to have Daddy home!

Tube Free!

Sorry for the delay in a post--I know y'all were getting antsy. But, I wanted to make sure I had some news to report!

Big news is that the chest tube came out today, and with that happening, Parrish seems much better (the downside to the chest tube coming out is that I think that means we won't see the cardio-thoracic surgeon again, and well, we had sort of become best friends). While there will still be some fluid draining from the incision site, that should diminish in the next couple days. They also have taken him off of IV fluids, so he is officially tube free. He has been able to get out of bed a little bit today which is huge progress. He and I are going to take lap around the floor in a few minutes--check out the lovely sights.

On the oncology front, we saw the team this morning. They did a bone marrow biopsy--and those results will be back early next week. The bone marrow biopsy will help determine the stage of the Hodgkin's. The way lymphoma is staged is that if the cancer is both above the diaphragm (think neck or chest) and below the diaphragm (think spleen), then it is considered Stage 3. If you aren't exhibiting any symptoms (weight loss, fever, night sweats), then it is considered Stage 3A; however, if you are exhibiting any of those symptoms, it is Stage 3B. If the lymphoma has spread to the bone marrow, then it is Stage 4 (with the same distinctions--Stage 4A or Stage 4B). For Parrish, we know that it is at least Stage 3B--because the cancer is in both his chest and spleen, and he is exhibiting symptoms. When the results of the bone marrow come back, we will know if, in fact, it is Stage 4B. However, regardless of Stage 3 or 4, the plan and goal for treatment will be the same.

As for treatment, we will know more later on today. We know that initially, treatment will begin with a "cocktail" of chemotherapy, likely to be followed with some other things. I don't want to post details on the treatment plan until we have confirmation from the lymphoma experts here. But the regimen that they are discussing has the goal of a complete cure--the doctors keep reiterating that.

Regarding the timing of treatment, the doctors feel that Parrish's kidney function needs to improve before they begin the chemotherapy. His creatinine levels are moving in the right direction, but chemotherapy takes its toll on the kidneys. At his current creatinine level, the doctors would have to start on such a low dose of chemotherapy, that it just wouldn't have the desired effect. So, the current plan (subject to change at any given moment, as I am learning), is to let Parrish go home (maybe) tomorrow. He will be able to rest at home and let his kidneys get stronger. He would be seen in the lymphoma clinic first thing next week and hopefully begin treatment then. His chemotherapy treatment would be outpatient. He also needs to have a couple outpatient items done--a PET scan (another imaging test) and the insertion of a mediport (an under-skin port where the chemotherapy will be injected). These can both be done in clinic next week.

So, I think you could say that we are moving in the right direction...with a diagnosis and a treatment plan, Parrish (with the help of his mighty army) is ready to fight this thing!

Much love,
Molly

Pathology Report

The pathology report came back this afternoon and the diagnosis is Nodular Schlerosing Hodgkin's lymphoma. This is the same type of Hodgkin's that Parrish had in 1995. So, they are considering this a relapse--one of the latest they (or really anyone) has seen. As previously stated, Parrish = Medical Marvel.

They will present his case to the UAB hematology/oncology board tomorrow at their weekly meeting and have all of the doctors discuss the treatment plan. Gives me comfort to think of all the brain power that will be analyzing Parrish's case.

As the doctor just said, under the circumstances, this is probably one of the best case scenarios we could have hoped for. And as Parrish said, "I've beaten this once; I'll beat it again." Those are the kind of fighting words I like to hear!

I will keep y'all posted as we get a better idea of treatment, timing and more. Keep those prayers coming!

Love,
Molly

The Waiting Game

Parrish had a pretty restful night. But, he is still having low oxygen levels (and is still on oxygen). The chest tube is continuing to cause him pain, but he is able to cough more, which helps the fluid drain. Since 4:30 am, he has had 200 mL of fluid come out. With that amount of fluid still draining, it is unlikely that they will pull the tube today. They did a couple chest x-rays this morning to check the tube and lungs, just to be sure everything looked okay. We will go over those with the surgery folks this afternoon.

Parrish is continuing to get IV fluids, and they added a magnesium drip this morning. Based on his morning blood work, his magnesium was low. When they are pumping you full of IV fluids, sometimes you can end up flushing out some of the electrolytes that you need. So, they are monitoring that closely. Still no results from pathology, but the doctors will let us know as soon as those results are in.

So not too much to report...just waiting and trying to be patient and let pathology do what they need to do, let Parrish's body heal from surgery, and let the doctors make the best decisions for moving forward. As always, I will keep y'all posted as we hear more.

Love,
Molly

Recovery Mode

I can't thank everyone enough for their thoughts and prayers yesterday. The outpouring of love and support for our family is truly overwhelming and so humbling. To our Birmingham "family"--thank you for the visits, the sustenance, the checking in--the list could go and on. We feel like we have an army of people taking care of us. And, to our friends and family farther away, thank you for the love and support we feel through the calls, texts and emails.

The surgery went great ("perfect" was the word the surgeon used!). They only made one incision which is amazing. They used the robotic arm to get 25-30 biopsies of the mass--a big chunk, said the surgeon (see, "chunk" is a medical term). They also drained the pleural fluid and left a chest tube in to continue to let the fluid drain. They drained two liters in the operating room and about 300 mL have drained since he came out of surgery. The doctors were also able to move the tumor a little bit away from the heart and then move the lung back in place.

Parrish is in a good bit of pain today--from the chest tube and just from the surgery itself. To be expected, of course. But he is resting now. He did crack a joke this morning which was the first one in a couple days. So, I am hoping that is a sign that things are moving in the right direction!

There really isn't anything to report as far as the biopsies go. The pathology should be back late tomorrow or Friday. So we won't have any specific diagnosis until then. For now, Parrish is just working on recovering from surgery.

Thank you again to everyone--we couldn't imagine going through this without all of you!

Love,
Molly

Surgery Today!

Update 2:
Parrish is out of surgery and did great. The doctor was able to do everything with only one incision. He drained the lung, and then got 25-30 biopsies from the mass by the heart. The doctor also was able to move the mass away from the heart somewhat and push the lung back up. Parrish should be out of recovery in about 30 minutes, and I will see him then. Many thanks for all your thoughts and prayers! Love-Molly

Update:
Parrish just left the pre-op area for the operating room. He should be back there about an hour to an hour and a half.



Another quick update to let y'all know that Parrish's surgery is scheduled for this morning. The surgeon came in this morning and said that Parrish's creatinine went down to 1.9, so they feel comfortable doing the surgery (and don't want to put it off to tomorrow if they don't have to). The surgeon thinks that getting the pleural fluid drained will go a long way to making Parrish more comfortable and help with his cough and breathing issues. Plus, the sooner they get the biopsy, the sooner they will know just what we are dealing with and the best way to fight it.

So, they should come get him about 9:45 am to take him to pre-op. The actual surgery should only take about an hour, but the pre- and post-op procedures will make the process longer. I will give updates as I know them.

Thank you for your thoughts and prayers today during surgery.

Love,
Molly

No Surgery Today

Just a quick post to let y'all know that Parrish is not having surgery today because of his kidney function. His creatinine level went up to 2.3 and the doctors are worried about the stress of surgery and anesthesia on his kidneys. His BUN is normal (and his electrolytes look good), so they still think that the kidney issues are just a result of the dye/contrast during the scans he had on Friday. The antibiotics he is on can also do a number on the kidneys.

They have scheduled a kidney ultrasound for today and a detailed urine study. The plan is to give Parrish more fluids and just let the kidneys rest. Surgery will be either tomorrow or Wednesday-but we won't know for sure until probably tomorrow morning.

Weekend Update

For those of you who recognized the Saturday Night Live reference in the title, don't expect any Tina Fey-like humor...I only wish I could be that funny.

We met with both the cardio-thoracic team and the oncology team this morning. And, I just can't say enough about the doctors--and the nurses--here at UAB. Truly an unbelievable team of caregivers!

Parrish's surgery is still set for tomorrow (Monday). He is the third surgery, so he likely won't be rolled back for pre-op until noon. Surgery will be early afternoon at best. The procedures should take about an hour. They will make 4 to 5 incisions in his right side/chest, each about an inch long. They will take a large chunk (technical medical term, huh) of the tumor in Parrish's chest for biopsy. In addition, they will drain the pleural fluid (around his lung) and do a pleural fluid study. This will tell them if there are any cancer cells in the fluid and if so, what kind. While the pathology from the chest tumor won't be back until Wednesday or Thursday of this week, the fluid study will come back sooner. In addition to the above, the surgeon will do a bronchoscopy to take a look at Parrish's airways and lungs more closely. The surgeons will leave a chest tube in post-surgery to continue to let any remaining fluid drain.

The oncology team has increased Parrish's fluids because his creatinine went up just a bit--it is just some stress on his kidneys due to all of the dye he had to ingest for his tests on Friday. He is still on zosyn (a broad spectrum antibiotic) since he came here with a fever. They would also have him on this anyway to prevent post-surgical infections. The oncologist said that Parrish's abdominal and pelvic scan showed nothing more than what they already knew about the mass on the spleen. And, the doctor isn't sure whether the mass on the spleen is more residual (leftover from Parrish's previous cancer) or part of what is currently going on. He will look at Parrish's scans from St. Jude to see how the spleen looked post-treatment.

Parrish's brain scan showed some "white matter abnormalities" or "enhancement." This could likely be the result of the chemotherapy that Parrish received at St. Jude. However, if the chest tumor is non-Hodgkin's lymphoma, then the doctors will want to do a spinal tap to make sure the brain enhancement is not cancerous. As a side note, Hodgkin's lymphoma does not spread to the brain, while non-Hodgkin's lymphoma can spread to the brain. So, if Parrish's tumor is a Hodgkin's recurrence, a spinal tap won't be necessary. But, given the look of the enhancement and Parrish's treatment regimen at St. Jude, it is likely just a result of chemotherapy treatments and nothing to worry about. Again, the oncologists here are going to look at the historical scans from St. Jude to see if/when this first appeared. You will all love to know that when Parrish first learned that his brain was "enhanced," he jumped at the chance to tell me that he always knew he had above-average intelligence.

So, what happens post-surgery? Based on what the surgeons see tomorrow and some initial impressions from the OR (as well as the pleural fluid study), they could start treatment before getting the complete pathology back later in the week. While most of his treatments will be outpatient, the doctors might do the first round of treatments inpatient. Given that Parrish has had chemotherapy before, they want to be able to monitor his reaction to the initial treatment, just to make sure of side effects and such.

Whew...so if you are still with me after all of that....thank you for the bottom of our hearts for all of the thoughts and prayers, phone calls, texts, emails and more. I can't even respond to them all--but don't think that I am not getting them. They are such bright spots and I am sharing them all with Parrish.

Thank you for your prayers. We are such believers in the power of prayer and we can feel your love and your words showering us. I am someone who tends to pray constantly throughout the day--my words aren't fancy or formal, just a running dialogue (think me at a stop light mumbling and you'll get the picture). But now, at the most important time, I can't seem to find the words...I am having a hard time quieting my heart enough, I guess. But I am using all of your words and all of your prayers, so thank you for giving me your words.

I will keep everyone updated tomorrow.

Much love,
Molly

Update No. 2

(From Friday, February 1, 2013)

All,
Sorry for not updating sooner...hard time getting to email today. But, Parrish's biopsy is scheduled for Monday. We have seen a team of doctors who have all been absolutely amazing. Thank you to UAB! Parrish is so lucky to be here--thank you to everyone who worked so hard to make the transfer here happen.

For the biopsy, they will make a small incision in his chest and biopsy the tumor next to his heart. At the same time, they will drain the fluid around his lung. These procedures will require general anesthesia and they will likely leave a chest tube in to continue to let the lung drain.

Today, Parrish has gotten more tests--abdomen and pelvic CT, brain scan and an echocardiogram. After these, he will just be hanging out at UAB until Monday's surgery. Having his own little Super Bowl party, I am sure.

Once the pathology comes back (which likely will be mid-week), the doctors will formulate a treatment plan. The oncology team said again today that they think this is a lymphoma, but will know more after the biopsy. There will likely be additional tests and procedures sometime next week after Monday, including a spinal tap and bone marrow.

Again, thank you to everyone for all your thoughts and prayers. Please pray especially for some rest for Parrish and some peace for us both as we process all of the information and the "new normal" we are facing. Please pray for Ivey and Campbell. Their little worlds have been totally turned upside down...and Ivey recognizes this especially. It breaks my heart to see them upset and confused. Ivey did come visit today and loved seeing Parrish but definitely wants him home NOW. I agree!

Much love,
Molly

Update No. 1

(From Thursday, January 31, 2013)

All,
As most of you know, Parrish was admitted to the hospital on Wednesday afternoon. He had gone to his internal medicine doctor Wednesday morning about a persistent cough, some weight loss and fatigue. Parrish's blood oxygen levels were a little low, although within normal, but the doctor ordered a CT scan. That scan showed, among other things, fluid on his lungs, a tumor on his spleen and a slightly enlarged spleen and a large pericardial tumor (about the size of a softball next to his heart). That tumor is causing obstruction to the superior and inferior vena cava. Parrish had Hodgkin's lymphoma as a 17 year old, but has been cancer-free since then. However, given his history and how the tumors are presenting, the initial thought is that this is some sort of lymphoma--this is of course, just an initial, albeit educated, assumption.

Yesterday evening, Parrish was transferred to UAB where we have a team of doctors assessing the right course of action. While we need to have a biopsy done of the tumor(s) and the fluid drained from his lungs, we also need to make sure that Parrish's heart and arteries are stable, and the cardio-thoracic folks are making sure of that. Today, the doctors will likely do a biopsy, and we will know more once the pathology comes back (although, that report won't be back before next week).

I don't have a lot of answers or even anything definitive to report, but as the news spreads, I just wanted everyone to be aware. Parrish is actually feeling relatively normal--which doctors find miraculous (as if he needs any encouragement in calling himself a "medical miracle"). In true Parrish fashion, he is buttering up all the nurses and cracking jokes with the doctors. So, his spirits aren't daunted!

Thank you to everyone for all of your thoughts, prayers, emails, texts and phone calls. I haven't been able to respond to them all--but it means so much to me and Parrish. I will keep everyone posted in the coming days, and I would just ask you all to keep those prayers coming!

Much love,
Molly