Saturday, July 20, 2013

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


Thursday, July 18, 2013

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






Monday, July 15, 2013

My Wingman

As previously mentioned on the blog, my mom has been here almost non-stop since January 30th, the day we found out about Parrish's cancer. I didn't even have to finish the sentence "Parrish's cancer is back" before she said, "I'm coming." She could hear in my voice that something was really, really wrong. She didn't ask "what can I do" but just showed up, which, of course, was exactly what we needed. Since then, she has been my wingman through this journey. She has gone above and beyond the call of duty. Laundry, grocery runs, cooking, cleaning, child care, hospital duty, Parrish duty, night duty, packing, moving, unpacking, decorating...and that is just to name a very, very few things. But, it isn't just what she has done. It is her presence that is so necessary in our lives. 

About two weeks ago, my mom started having serious neck, shoulder and arm pain. She has a history of cervical disc problems, and she lives with daily pain. But, this was not her typical pain. Of course, she moved through it--doing all the usual things she does for us around here, in addition to celebrating the Fourth of July, taking the boys on an overnight adventure and then celebrating the boys' birthdays. But, by last Sunday, she was literally incapacitated from the pain. She couldn't even bear to be upright. My dad had been here for a few days, and I suggested to him that she needed to go home to see a doctor. When we broached the topic with her, she didn't immediately say "no." So, I knew it must be bad. My dad drove my mom back to Memphis last Sunday, and she has spent the past week dealing with doctors, having an MRI, trying to figure out the best course of action, and trying her hardest to heal herself through rest, ice and meds. Her MRI showed that she has a herniated disc in one spot and a bulging disc in another. It is not good. The doctor performed a nerve block early this morning, but he said that he is not optimistic that she'll get any relief from it because according to him, the herniation "is a real honker." Talk about a medical term. If the nerve block doesn't work, she could be facing surgery.

Of course, my mom isn't complaining about her pain or worried about herself. Through all of this, her concern is us. She feels like she has left us just before the storm. So my mom. She is the one in constant pain (pain that we caused by letting her do too much!), and yet, she is only worried about us. 

Needless to say, the last week has been an emotional one. Not only have we faced another setback with Parrish's transplant, but we--especially me-- have lost our wingman. And, it isn't just all the things my mom does around here. That loss is something I can deal with. It won't be easy, but I can do it. Rather, it is the emotional support that is almost too much to bear. My mom makes this really isolating journey just a little less lonely. And, I don't mean lonely in the physical sense. Quite the contrary. I don't think I have actually been alone in ages. I am constantly surrounded by people in my house, at the hospital, at work. I am not in the least bit physically lonely. 

No, what I am talking about is the sort of loneliness that is much harder to talk about, more uncomfortable to hear about and much less fixable. It can hit you in the midst of a large group of people. Everyone might be talking about what they are doing for the weekend or the latest movie that is out or the newest restaurant in town or kids' swimming lessons or kindergarten or an important Supreme Court decision. You are nodding your head in agreement or chiming in with the appropriate social response. But, in your head, you are retreating into an excruciatingly lonely place. Because, what everyone around you doesn't realize is that you have no idea what you are doing this weekend because your husband may or may not be in the hospital from _______ (infection, transplant, chemo, seizure, dehydration--insert word of choice in the blank). You have no idea about the latest movie or newest restaurant because you can't possibly hire a babysitter at night because since all the cancer stuff started, your children can't bear to have anyone but you put them to sleep and by the time that is done, your husband is asleep too. You also don't even know that the latest Supreme Court decision was released, because every spare minute of your day goes to researching every last thing relating to Hodgkin's recurrence, transplant success rates, survival statistics, alternative treatments, nutrition and more. 

Believe me when I say that it isn't that I don't want to hear about the latest and greatest things or lament with a friend about her latest struggle...I promise, I do, so don't quit including me in the conversation. Most of the time, hearing about normal life makes me feel just a little bit more normal, but, sometimes--just sometimes--these sorts of conversations are a very stark reminder of how much our life has changed in the last six months. And, try as everyone will, they can't understand what our small family is going through, unless, of course, they themselves have gone through something similar. But my mom--well, she can relate because she has been living this journey right alongside us. She has been here since the first moment and has grieved our loss of normalcy at every step, showering us with love, support and understanding that is irreplaceable. She just gets it. That is what I have missed most this week.

Parrish feels the same way. Aside from me, my mom is probably the only person Parrish can be totally real in front of--pain, grief, fear, anger and all. Of course, once your mother-in-law helps you change out of a vomit and blood soaked hospital gown or sees you spread out on a stretcher in your boxers, it sort of takes your relationship to a new level. But, not having to be "on" or pretend that this is all okay is a relief for him. And, Parrish misses that comfort. In fact, when I told Parrish about my mom's MRI results, his first response was "We are totally screwed." Nice. (In his defense, this was quickly followed by major concern for my mom's well being.)

Ivey and Campbell are definitely missing their Emme. Campbell wakes up most mornings going "Emme...Emme...Emme..." I am a close second, but don't hold a candle to his adoration of Emme. Ivey woke up two mornings ago and said that he had closed the door to Emme's room (aka, the guest room). He said that no one was allowed to go in there until Emme got back. He said "the rule is no one can stay there but Emme." The kid is nothing if not loyal (and just a little bit bossy). But, they just adore her...because she totally and utterly adores them. Her love for them pours out of her into everything that she does. I only hope that my boys see that same love from me. 

Now, please, please don't misunderstand me, this post isn't a cry for help. I have an army, literally an army, of people here who are doing and will do anything I need them to do. We even had a dear friend from Memphis come earlier in the week (at a moment's notice no less) to fill in for a couple days while our nanny was out and Parrish had surgery (thank you, thank you Ginger!).  I can farm out the doing. But it is my mom's presence that just can't be replaced.

We are all hopeful that today's nerve block will be the miracle cure. And, surely, we are due a small miracle, right? So, today, please pray for the nerve block to provide total and complete relief for my mom. One, because I can't stand to think of her in constant, excruciating pain (that we caused). But also, and waaaayyyy more selfishly, because I can't imagine going through the next few weeks without my wingman by our side. 


Saturday, July 13, 2013

Let's Party!

Life isn't always cancer, transplants and infection around here. Last Saturday, we snuck in a birthday party for the boys. It was a celebration very small in number but really big in fun. Ivey said he only wanted Campbell, Mommy, Daddy, Emme and Guh at his party...good thing, because that's what was planned. He also had some very specific cake and present requests that I had to deliver on. Thankfully, though, he didn't mind sharing his celebration with Campbell. 

A dear family friend sent the most fun water toys to the boys for their birthdays and those (along with the boys' sea creature obsession!) gave us a theme. Good thing the party was water-friendly since it rained a good portion of the day. Even that couldn't stop the fun, though. We played water tag, did the slip and slide, and played on the play set rain and all. Per the usual, the boys spent most of the day celebrating in their birthday suits!

What started as a day of birthdays has now turned into a week-long birthday bender. Ivey has referred to it as his "birth week." Not day, week. But hey, when your Daddy has cancer, you get a birthday week, right? 

Below are a few pictures from the celebrating....



























This weekend, we are in recovery mode from all of the celebrating. Well, at least some of us are....when I was reading Ivey stories last night, he asked what kind of party he was going to have when he turned five. Let the planning begin.

Happy weekend!

Love,
Molly

Wednesday, July 10, 2013

Same Song, Second Verse (or Maybe Third)

So....a slight change in plans. (That seems to be the theme in this journey!) Most of you know that Parrish was supposed to be going in-patient at UAB today, but things changed yesterday afternoon. Here's the back story...

On Monday, Parrish had the Hickman catheter (or external line) placed. Everything went well with that procedure. He went in yesterday morning for what we thought would be his test dose of chemo. However, they ended up postponing it (which I called on Saturday, mind you). See, over the weekend, Parrish was a little off. He didn't seem to notice it as much as I did, but after the last bout with infection, I am hyper-sensitive about these things. We went about the boys' birthday celebrations, but late Saturday afternoon, he ended up going into the BMT unit for blood work and just to get checked out. They did labs and his kidney function was a little low, but the doctor on call decided to move forward with the line placement on Monday. Typically, Parrish has little to no side effects from the line placement. But, he seemed more wiped than usual from it on Monday, was sick at his stomach and his color was just not right. Nothing too alarming, but still, something I couldn't put my finger on. He went into the BMT unit early Tuesday for labs and the start of chemo. But, once the nurse practitioner (who we really love) saw him, she, too, thought he was just "off." Because of Parrish's history over the last couple months with infections, the team decided to postpone the high dose chemo and transplant. Instead, Parrish will have five days of IV antibiotics at home, just to be sure that any potential infection that might be brewing is wiped out. Then, next week, he will go in on Tuesday for the test dose of chemo and go in-patient the following day. After a week of in-patient high dose chemo, he will have the transplant on Friday, July 26th. 

We are all disappointed, because we were just ready to get this show on the road. But, this isn't a procedure that you want to push...the level of chemotherapy involved is beyond brutal. No one wants Parrish going into that at anything less than healthy (well, healthy by bone marrow transplant standards, at least). 

So, we are re-grouping today...something we should surely be familiar with by now, right?! Of course, a few extra days with Parrish at home is a change we are all enjoying.

Much love,
Molly




Friday, July 5, 2013

Happy 4th of July!

We have had a fun (albeit, rainy) few days celebrating the 4th of July! As you can see from the pictures, it was a true all-American celebration full of bubbles, boots, food, and fireworks. Happy birthday America!




Bubbles = Endless Entertainment

Especially when you add in water guns!


Guh brought the boys cowboy boots from his New Mexico trip...

The boots were a huge hit!

Campbell learned how to "drive" this week.

Cowboys don't need pants, apparently.

Campbell opted for M&Ms instead of BBQ on the 4th.

The boys requested a "PJ tailgate" for fireworks.

Everyone was impressed with the fireworks display.

Boys being boys...

Rain or shine, these boys are in sunglasses.

Three boys heading out for an adventure...
clearly Ivey spent the 4th celebrating his right to bear arms!


Friday, June 28, 2013

Happy Weekend!

All back under one roof...whew...quite a few weeks. We are very ready for and much in need of a (hopefully) relaxing weekend. Many, many thanks for all the thoughts and prayers this past week. I am definitely ready to put this one behind me and move on! One day I'll be able to laugh about it...one day, just not today.

We did finally get a transplant calendar from the BMT Unit late yesterday afternoon. Parrish will have his double catheter placed on Monday, July 8th (that is an outpatient surgery); he'll have a test dose of the high-dose chemotherapy on Tuesday, July 9th (also known as Ivey's birthday) and then go in-patient on Wednesday, July 10th (the day before Campbell's birthday). They will do the remaining chemotherapy doses in-patient over the course of a week. The actual stem cell transplant will be Friday, July 19th.

Until then, we will be having some quality family time (and some early birthday celebrations!). 

Hope everyone has a great weekend!

Love,
Molly


***The last few weeks haven't been all about staph and hospital stays. We have found time for a little fun!

Nothing says "summer" like a push up.

Hanging out in a favorite climbing tree at the new house.

We started a garden in the backyard!

Gardening is serious business for these two.

Proudly watering his hard work.

And here is our Naked Gardener...

Ivey has quite a swing...wonder where he gets that?!

Please look at the little boys' faces...total happiness.