As I have said before, Parrish and I have been overwhelmed by the outpouring of love and support that we have felt over the last few months. At times, such love and support can come at the least expected times, from the least expected person.
On Wednesday, I stopped at our local Starbucks for a much needed misto on my way to work. (My co-workers will tell you that I am rarely seen sans Starbucks cup these days. It might be a problem.) I will admit, I love my Starbucks. Sure, it might be over-priced caffeine, but stopping at Starbucks is about way more than coffee for me. Case in point was Wednesday.
As I waited for my misto at the counter, one of the baristas (who always calls me by name) asked me how I was doing. He went on to ask how my family was doing. "And your husband," he asked "how is he?" I wasn't quite sure if he was just asking to make conversation, so I replied that he was fine, doing good. Something sort of flippant. The barista said, "I guess as good as can be expected considering what he is going through. Just know that all of us here are thinking about him and praying for him and your family."
Few things (besides my children) can literally take my breath away. But, there, in the middle of my Starbucks, I was speechless (and sort of worried that I was about to start sobbing). I have no idea how the barista (whose name I won't use because I don't have permission) even knows about what is going on with Parrish. Parrish isn't a coffee drinker and rarely goes to Starbucks. So, I don't think anyone there has seen him. And, I definitely haven't told anyone there what is going on. My only guess is that they have overheard someone ask me how things are going. And, maybe they followed up with that customer. I have no idea. How they know is relatively irrelevant.
What is so powerful to me is that the folks who work at my Starbucks are praying for Parrish. People who don't know him. People who I interact with for seconds. They take the time to care about and pray for us. That barista had no idea just how much I needed his kindness that morning. It was a random, unexpected gift, and it has fueled me for the rest of the week.
See, my Starbucks serves way more than just coffee.
**I know most of you are waiting for more of a medical update...and I will post more later today. Life has gotten in the way of blogging!
Saturday, April 27, 2013
Tuesday, April 9, 2013
What I Haven't Told You...
There is a part of this crazy story that I haven't yet shared on the blog. I've kept thinking that it wasn't going to happen, but turns out that it is. What's the story? Oh, we sold our house. And before you ask, no, it wasn't on the market.
About three weeks ago, Parrish and I got a letter in our mailbox. It was from a real estate agent, and it said that she had a couple looking to buy a house in our neighborhood. They hadn't been able to find anything they wanted, but they liked the look of our house. Would we be willing to show it to them? Now keep in mind, I am married to a commercial real estate guy. In his world, everything is for sale...for the right price. Still thinking this might just be a joke, we called the real estate agent. Oh, it was for real. She made an appointment for her clients to come see the house. We sort of laughed and thought, this will never actually happen, but at least someone thinks the outside of our house is cute.
The couple and their agent came by on a Sunday afternoon. Not twenty minutes after they left, the agent called and said that they would like to make us an offer. Even at this point, Parrish and I thought that there was no way that they would offer us enough to entice us to unexpectedly move...and in the middle of cancer. We got the contract on Monday (that same night, Parrish went into the hospital to receive the second round of chemo). The offer price was good, but not really enough to make us move. So, Parrish (using his keen negotiating skills), just said he thought we were too far apart. I mean, we didn't even counter, sort of thinking that would be the end of it. Nope. They came back with a new price. And, it was one we couldn't turn down. So, from the ninth floor of the hospital, Parrish and I signed the contract (witnessed by the nurse no less).
Of course, we still thought this wasn't really going to happen. There would be something in the inspection, or the house wouldn't appraise. Something. Nope. The inspection came back virtually clean, and the house appraised. So, we are set to close April 30...you know, four days after Parrish has his battery of pre-transplant tests. A couple weeks before the transplant starts. Perfect timing, huh?
It is crazy. Crazy. (Yes, I have used that word too many times for one blog post, but there is just no other way to describe it). The truth is, though, that if someone had made us this offer six months ago, we would have jumped at it. With two little kids, we have outgrown our house. We have toyed with the idea of moving, but couldn't find the time to actually get it ready to put on the market. So, even in the midst of cancer, we just couldn't turn down the opportunity to sell our house without even listing it for a price that was almost too good to be true.
So where are we moving? Good question. Sure wish I knew the answer. We think the smartest plan is for us to find something to rent for the next year. I just don't have time right now to look for a house to buy, and I definitely don't have time to do any work on a house. Plus, I don't think buying a new house when your husband has cancer is really the smartest thing to do. We need to take the next year to regroup...work on getting Parrish healthy and take time to look for the best house for our needs. In the meantime, I am frantically looking for a house to rent. If you are in this area and have any leads, please email me. I am getting a little panicked. Thankfully, the precious couple buying our house will let us rent it back from them for a little while if we need to. But, ideally, we would like to get into a rental sooner rather than later.
I am writing this blog post as if I don't have any worry or hesitation about moving. That really isn't true. I am very, very torn. We have the most perfect, Mayberry-esque neighborhood (which is why things tend to sell off-market), and our dear friends live a stone's throw away. This is the house that I brought my babies home to...where they took their first steps...where we became a family. Neighbors have rallied around us during the last couple months in ways that I never could have imagined. All of that is very hard to give up. But, at the end of the day, our house selling feels like divine intervention...and I don't write that flippantly. It does. We are trusting that this is the right thing to do. Putting our faith into action and hoping (and praying) that this isn't a terrible mistake.
Now, let the packing begin!
Friday, April 5, 2013
What Lies Ahead
Thank you to everyone for their excitement, celebration and joy over the clean PET scan. We agree that it is truly an answer to prayers. And, while we are thrilled that the clean scan came earlier than expected, we are also very overwhelmed at the bone marrow transplant that lies ahead.
Yesterday, the director of the transplant team and the coordinator of the transplant unit came by to meet with us and go over the details and schedule for the bone marrow transplant (BMT). As previously discussed, all of the doctors are treating Parrish's Hodgkin's as a recurrence. Once Hodgkin's returns, there is an overwhelmingly high chance of it returning again, if a patient does not have a BMT. As one doctor put it, "without a BMT, I can tell you Hodgkin's will come back, I just can't tell you when." But, with a BMT, there is a much higher likelihood for a long term cure. Nationally, the statistics are 70% of patients have a life long cure. UAB has a slightly higher rate than that. So, all signs really point to a BMT, and the transplant team confirmed that view.
Despite realizing that this is what needs to happen, the reality of it actually happening is hard to comprehend. It is a big deal. And despite an autologous BMT being a rather "routine" procedure in the world of transplants, there is nothing routine about this in our world. We had an okay meeting with UAB's transplant team yesterday, but additional meetings today went much, much better. I toured the BMT unit (where Parrish will spend a lot of quality time), and tried my best to make nice with all the powers that be. I want to make sure Parrish is the favorite patient well before he gets there! (It helps to flash pictures of cute kids...and I am so not above pulling out the I-phone slide show.)
I know everyone has a lot of questions about the BMT, so I will try to answer some of them now. The most common question I get is how are they using his own stem cells, since he is the one with cancer. The cancer had not spread to his bone marrow (this time or back in1995), which is why they can use his own stem cells. And, using a person's own stem cells is much preferred to using a donor's because of there is no risk of rejection and no risk of graft versus host disease.
So what actually happens with a BMT? Before the BMT occurs, Parrish will have several procedures and treatments. First, he will have blood tests to screen for infectious disease, pulmonary function tests, chest x-rays, echocardiogram, and more. After all those tests are done, the doctors will place a central venous catheter in the left side of his chest--it is called a double lumen apheresis catheter. It will be used to collect the stem cells. (Parrish's other port, that is already in place, will be used for labs, chemotherapy, fluids and such.) After the line placement, the actual stem cell collection process will begin. Parrish will take neupogen shots at home for four to five days. The neupogen will stimulate his body to produce stem cells (technically called "neupogen mobilization of stem cells"). At the end of those four or five days, the doctors will collect Parrish's stem cells (called "apheresis").
Apheresis is done outpatient. Parrish will go to the BMT outpatient clinic where he will be hooked up to a machine that takes out his blood, separates out the stem cells for collection and then returns the rest of the blood cells back into his body. The doctors will harvest enough stem cells for two bone marrow transplants, keeping the extra amount frozen in the event additional stem cells are needed at a later date. The collection process takes 4 to 6 hours. The goal is to harvest enough stem cells over that time period that an additional day is not needed, but in some cases, a second day of collection is required.
About four weeks after harvest, Parrish will receive high dose chemotherapy. This high dose chemotherapy includes five doses of busulfan, all given outpatient over the course of a week. After the fifth dose of the busulfan, Parrish will be admitted to the BMT in-patient unit where he will receive two more days of chemotherapy (cytoxan and etoposide). Just how high a dose of chemo is it? Well, his hematologist said that it is 100 times stronger than the ICE treatment he is getting now. The BMT director said 20 times stronger. Regardless, it is waaaayyyyy stronger. Both of the doctors said that the high dose chemo is designed to kill everything bad and everything good in Parrish's body. It pretty much takes him to the brink.
After the second day of the cytoxan and etoposide, Parrish has a day of rest. Transplant day occurs the next day and is referred to as "Day 0." The transplanted stem cells will enter the marrow cavities of the bones through Parrish's lungs and spleen. The stem cells will divide and produce red cells, white cells and platelets (called "engraftment"). This process takes several weeks (3 to 4 weeks), and during this time, Parrish will remain in-patient in the BMT unit at UAB. He will have side effects like any chemotherapy treatment--nausea, loss of appetite, fatigue, mouth sores, low blood counts, and such (these side effects tend to peak five days after transplant). The doctors and nurses will manage the side effects with the same medications and/or transfusions like do here on the ninth floor.
During these three to four weeks, Parrish will be at a high risk of infection as his body rebuilds itself. Because of this, Parrish will be on a strict neutropenic diet (in a nutshell, nothing raw, including salads for 30 days...nothing that was made and then frozen....nothing packaged with an insanely ridiculous shelf life...nothing from restaurants with below 90 health rating). If you want more info on his diet restrictions during this time, I have lots of literature! In addition, Parrish will only be able to drink water that is filtered or bottled, no tap water of any kind. The BMT unit also is highly regulated--you have to have a passcode to enter, all rooms have a special air filtration system unique to that room to keep germs from spreading, no live plants or flowers are allowed anywhere in the unit, all electronic devices used by patients must be screened, visitors are restricted to a certain number, and no one under the age of four is permitted in the unit. So, that means Ivey and Campbell won't be able to visit. Ugh. A month without seeing Daddy...can't even go there right now.
After being discharged from the hospital, Parrish will have daily check ups for about a week, and then weekly visits until day 100. At day 100, Parrish will be released back to the hematology folks where he will proceed with the normal post-cancer treatment follow-up (blood tests, scans, etc.). In addition, Parrish will continue to be monitored by the transplant team for the next year or so.
So, when is this all supposed to start? The plan now is for Parrish to have pre-transplant tests starting on April 26th. Then, we would just go from there. From the pre-transplant tests to discharge date after transplant, it is about 6 to 8 weeks (only 3 to 4 of those are actually in-patient though). We can hope that Parrish will be out of the hospital in time to celebrate the boys' birthdays in early July...and with a little luck, maybe we can even celebrate our ten year wedding anniversary (on June 21st) outside the four walls of the hospital.
Again, the doctors are extremely optimistic about the BMT and have said to try and think of an autologous BMT as a way in which to administer extremely high doses of chemotherapy, rather than an actual transplant. The risks associated with an autologous BMT are minor...not anything like an allogenic (donor) BMT. So, we feel confident about the procedure. That doesn't change just how overwhelmed we (and especially I) feel about all of this. It is hard for me to dance a jig to celebrate a clean scan when I know what is up next. Honestly, those of us in the trenches are all tired from the last 9 weeks...and the next several months look to be even more physically and emotionally grueling. So, please keep those prayers coming (prayers for peace, for strength, and for some quality family time pre-BMT).
Parrish is finishing up the last round of treatment today and should get out of the hospital tonight. Just in time for the weekend! We will keep everyone posted as things progress with the BMT.
Love,
Molly
Yesterday, the director of the transplant team and the coordinator of the transplant unit came by to meet with us and go over the details and schedule for the bone marrow transplant (BMT). As previously discussed, all of the doctors are treating Parrish's Hodgkin's as a recurrence. Once Hodgkin's returns, there is an overwhelmingly high chance of it returning again, if a patient does not have a BMT. As one doctor put it, "without a BMT, I can tell you Hodgkin's will come back, I just can't tell you when." But, with a BMT, there is a much higher likelihood for a long term cure. Nationally, the statistics are 70% of patients have a life long cure. UAB has a slightly higher rate than that. So, all signs really point to a BMT, and the transplant team confirmed that view.
Despite realizing that this is what needs to happen, the reality of it actually happening is hard to comprehend. It is a big deal. And despite an autologous BMT being a rather "routine" procedure in the world of transplants, there is nothing routine about this in our world. We had an okay meeting with UAB's transplant team yesterday, but additional meetings today went much, much better. I toured the BMT unit (where Parrish will spend a lot of quality time), and tried my best to make nice with all the powers that be. I want to make sure Parrish is the favorite patient well before he gets there! (It helps to flash pictures of cute kids...and I am so not above pulling out the I-phone slide show.)
I know everyone has a lot of questions about the BMT, so I will try to answer some of them now. The most common question I get is how are they using his own stem cells, since he is the one with cancer. The cancer had not spread to his bone marrow (this time or back in1995), which is why they can use his own stem cells. And, using a person's own stem cells is much preferred to using a donor's because of there is no risk of rejection and no risk of graft versus host disease.
So what actually happens with a BMT? Before the BMT occurs, Parrish will have several procedures and treatments. First, he will have blood tests to screen for infectious disease, pulmonary function tests, chest x-rays, echocardiogram, and more. After all those tests are done, the doctors will place a central venous catheter in the left side of his chest--it is called a double lumen apheresis catheter. It will be used to collect the stem cells. (Parrish's other port, that is already in place, will be used for labs, chemotherapy, fluids and such.) After the line placement, the actual stem cell collection process will begin. Parrish will take neupogen shots at home for four to five days. The neupogen will stimulate his body to produce stem cells (technically called "neupogen mobilization of stem cells"). At the end of those four or five days, the doctors will collect Parrish's stem cells (called "apheresis").
Apheresis is done outpatient. Parrish will go to the BMT outpatient clinic where he will be hooked up to a machine that takes out his blood, separates out the stem cells for collection and then returns the rest of the blood cells back into his body. The doctors will harvest enough stem cells for two bone marrow transplants, keeping the extra amount frozen in the event additional stem cells are needed at a later date. The collection process takes 4 to 6 hours. The goal is to harvest enough stem cells over that time period that an additional day is not needed, but in some cases, a second day of collection is required.
About four weeks after harvest, Parrish will receive high dose chemotherapy. This high dose chemotherapy includes five doses of busulfan, all given outpatient over the course of a week. After the fifth dose of the busulfan, Parrish will be admitted to the BMT in-patient unit where he will receive two more days of chemotherapy (cytoxan and etoposide). Just how high a dose of chemo is it? Well, his hematologist said that it is 100 times stronger than the ICE treatment he is getting now. The BMT director said 20 times stronger. Regardless, it is waaaayyyyy stronger. Both of the doctors said that the high dose chemo is designed to kill everything bad and everything good in Parrish's body. It pretty much takes him to the brink.
After the second day of the cytoxan and etoposide, Parrish has a day of rest. Transplant day occurs the next day and is referred to as "Day 0." The transplanted stem cells will enter the marrow cavities of the bones through Parrish's lungs and spleen. The stem cells will divide and produce red cells, white cells and platelets (called "engraftment"). This process takes several weeks (3 to 4 weeks), and during this time, Parrish will remain in-patient in the BMT unit at UAB. He will have side effects like any chemotherapy treatment--nausea, loss of appetite, fatigue, mouth sores, low blood counts, and such (these side effects tend to peak five days after transplant). The doctors and nurses will manage the side effects with the same medications and/or transfusions like do here on the ninth floor.
During these three to four weeks, Parrish will be at a high risk of infection as his body rebuilds itself. Because of this, Parrish will be on a strict neutropenic diet (in a nutshell, nothing raw, including salads for 30 days...nothing that was made and then frozen....nothing packaged with an insanely ridiculous shelf life...nothing from restaurants with below 90 health rating). If you want more info on his diet restrictions during this time, I have lots of literature! In addition, Parrish will only be able to drink water that is filtered or bottled, no tap water of any kind. The BMT unit also is highly regulated--you have to have a passcode to enter, all rooms have a special air filtration system unique to that room to keep germs from spreading, no live plants or flowers are allowed anywhere in the unit, all electronic devices used by patients must be screened, visitors are restricted to a certain number, and no one under the age of four is permitted in the unit. So, that means Ivey and Campbell won't be able to visit. Ugh. A month without seeing Daddy...can't even go there right now.
After being discharged from the hospital, Parrish will have daily check ups for about a week, and then weekly visits until day 100. At day 100, Parrish will be released back to the hematology folks where he will proceed with the normal post-cancer treatment follow-up (blood tests, scans, etc.). In addition, Parrish will continue to be monitored by the transplant team for the next year or so.
So, when is this all supposed to start? The plan now is for Parrish to have pre-transplant tests starting on April 26th. Then, we would just go from there. From the pre-transplant tests to discharge date after transplant, it is about 6 to 8 weeks (only 3 to 4 of those are actually in-patient though). We can hope that Parrish will be out of the hospital in time to celebrate the boys' birthdays in early July...and with a little luck, maybe we can even celebrate our ten year wedding anniversary (on June 21st) outside the four walls of the hospital.
Again, the doctors are extremely optimistic about the BMT and have said to try and think of an autologous BMT as a way in which to administer extremely high doses of chemotherapy, rather than an actual transplant. The risks associated with an autologous BMT are minor...not anything like an allogenic (donor) BMT. So, we feel confident about the procedure. That doesn't change just how overwhelmed we (and especially I) feel about all of this. It is hard for me to dance a jig to celebrate a clean scan when I know what is up next. Honestly, those of us in the trenches are all tired from the last 9 weeks...and the next several months look to be even more physically and emotionally grueling. So, please keep those prayers coming (prayers for peace, for strength, and for some quality family time pre-BMT).
Parrish is finishing up the last round of treatment today and should get out of the hospital tonight. Just in time for the weekend! We will keep everyone posted as things progress with the BMT.
Love,
Molly
Monday, April 1, 2013
This is no joke...
Parrish's doctor called tonight with some unbelievable news. Parrish's PET scan today was completely clean...in the doctor's words, Parrish is in "complete remission." And yes, it might be April Fools Day, but this is seriously no joke.
I am not sure what exactly I said to the doctor, but he clearly realized I needed more confirmation, because he said "you do not even know, his scan was absolutely beautiful. It is really amazing. I can't wait to show it to you." Trust me, we can't wait to see it.
So, what does this mean? Well, we don't know all the details, and we won't until after Parrish's appointment on Wednesday morning. But, for starters, Parrish will still have at least one more treatment (the next one to begin this week like we thought). And, he still has a very long road ahead of him with the bone marrow transplant (the doctor wants us to meet with the transplant team as soon as possible). We just couldn't wait to share this good news though.
Thanks to all of you for your prayers and support in this cancer journey...there is a long way to go, but tonight, we are celebrating this huge milestone with all of you.
Much love,
Molly
I am not sure what exactly I said to the doctor, but he clearly realized I needed more confirmation, because he said "you do not even know, his scan was absolutely beautiful. It is really amazing. I can't wait to show it to you." Trust me, we can't wait to see it.
So, what does this mean? Well, we don't know all the details, and we won't until after Parrish's appointment on Wednesday morning. But, for starters, Parrish will still have at least one more treatment (the next one to begin this week like we thought). And, he still has a very long road ahead of him with the bone marrow transplant (the doctor wants us to meet with the transplant team as soon as possible). We just couldn't wait to share this good news though.
Thanks to all of you for your prayers and support in this cancer journey...there is a long way to go, but tonight, we are celebrating this huge milestone with all of you.
Much love,
Molly
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