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

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!

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.

A Real Eyesore

Just a quick update to let y'all know that I am still in-patient at the eye hospital. They have had me on IV antibiotics since Tuesday evening, and I am set for another dose at 11. My eye/face definitely looks better, but it isn't completely improved (and not as improved as expected). The doctor just came by and said that he is going to come back in a little while and make two incisions to drain the infection sites. He says the incisions will be very small and are "not a big deal." Easy for him to say....he is the one doing the cutting...but two incisions around MY EYE seem like a very big deal indeed. Geez....I thought swelling was bad but now cutting around my eye. Ugh. 

The good news is that afterwards, I should be able to go home and likely just take oral antibiotics from here on out. Definitely ready to be home!

I know a lot of you have questions about the staph infections that Parrish and I have had. In a nut shell, we all have staph all over us, all the time, just sitting dormant. There is staph everywhere, pretty much on every surface, and especially in hospitals. Sometimes, when the staph gets into a cut or into any opening in the skin, it can cause an infection. Most of the time, a body just fights off the infection and you won't even realize it. Other times, the infection can be cleared up with oral antibiotics. Sometimes, they might have to cut into the infection and drain it. But, that is usually it. In Parrish, because his immune system is so compromised, the infection spread very quickly and got into his blood stream, causing septic shock (a very, very serious condition). This wouldn't happen in an otherwise healthy person. With me, they think that I was just really worn down (more than I even recognized), and so the infection was harder on my body than it otherwise should have been.  And, because both of us have been spending so much time in hospitals these days, it really isn't surprising that we got it, nor was it really preventable. It doesn't mean that we are doing something wrong or that everyone in our house is going to get this. Everyone agrees that this staph came from the hospital, and that the issues we have had with it are more related to our physical states. My mom has even talked to the CDC about it! So, trust me, we are doing our homework. 

There were and are some precautions we can take to limit exposure: Bactraban nose swabs daily for all of us at home (staph tends to stay in the nose and you can kill it there before it starts...so the thought is, even if we do bring it home from the hospital, we can stop it before it becomes a problem); changing clothes/showering immediately after returning home from hospital (most of our doctor friends make this a constant practice); and vigilantly monitoring any cuts or scrapes and treating with antibiotic ointment. In addition, we will continue the practices we already have in place: almost religious-like hand washing and hand sanitizing (even Campbell can say "and anitizer" and hold out his hands); constant cleaning of surfaces with disinfectant; and daily laundry (insane amounts of laundry). Of course, you can't eliminate staph...it is everywhere we go and on all of us. Bu, we can attempt to prevent staph from the hospital coming into the house and prevent any dormant staph from getting into cuts and scrapes. 

We have been in close contact with the BMT Unit, and they are just very honest about the fact that most of their patients have to fight off several MRSA staph infections throughout their transplant process. Because these patients are so immuno-compromised and because they are in the hospital so often, it is just the nature of the beast so to speak (sad but true that hospitals are the places you are most likely to acquire staph!). This isn't super comforting, but I guess it is part of it. And at least we know and can be more attuned to the symptoms. They did tell me that they usually don't see it in family members...not sure if that makes me special in a good way...

Okay, that is my relatively brief synopsis on staph...just what you all wanted to read about today, I am sure. I will keep everyone posted on things as the day unfolds. But if all goes as planned (ha...did I really just write that...has anything gone as planned??), then I should be home this afternoon.

Many thanks for all the love and prayers!

Love,

Molly

The Hits Just Keep on Comin'

Parrish is doing much better! He had labs done yesterday, and the doctors pulled his PICC line out. They wanted to get it out as soon as possible to avoid infection, and they have to put a different type catheter in for the transplant. So, for a short time, he is tube-free! Today, he is at UAB for a variety of pre-transplant scans and tests. We still don't know when the transplant will be, but we are hoping to have an idea by tomorrow. It takes several days to read all of the scans/tests and then he has to have the catheter placed (outpatient surgery) and then start the high dose chemo. I will definitely keep y'all posted as we know more about the schedule.

In other news, as I mentioned last week, I was diagnosed with a staph infection--the cultures came back positive for MRSA staph aureus (the same thing that Parrish was treated for). It started with a bump in my eyebrow, and a dermatologist put me on oral antibiotics thinking it would quickly get better. There was improvement by Saturday, but then on Sunday morning, things got much worse. My eye was almost swollen shut, and it was very red and purple. By Monday, the swelling was into my cheek and sinus area, all on the right side of my face. It sort of looked like I had been punched (or that half of my face had become the Joker from Batman).  Either way, not a good look and very alarming. So, I went to a variety of doctors yesterday, most importantly an ophthalmologist, since the eye was at risk. She says that I have pre-septal cellulitis caused by MRSA staph. The septum is what protects the orbital wall, so it was a good thing I went when I did. The doctor quadrupled my antibiotic dose, but said that I might need to come in-patient for IV antibiotics if the oral ones won't do the trick. This morning, things aren't any better, so I am waiting on the doctor to call back with a plan. They can also cut into the eyebrow/eye area to drain and debread the infection. You can imagine how enticing that sounds to me right about now.

Needless to say, everyone is a little tense around here. The possibility of me having to go into the hospital, the fear of the risk this infection poses to some really crucial things (like my eye...), and the frustration with the BMT Unit for their lack of education, information and preventative care relating to staph have all made us edgy. 

It really does just feel like we are living under a black cloud...I mean, a family can only handle so much. I think we have hit our limit. (And yes, I do realize that all of these issues are first world problems, and that there are areas of the world and in our own backyards with much greater concerns. But, these first world problems feel very significant in our lives right now.) So, today, please pray for some clarity on the transplant calendar--that will give us all a plan to work with. And, please pray for my infection to heal quickly and without complication. Please pray for my mom (who is shouldering even more now) and for Ivey and Campbell (who continue to have their world turned upside down).

Much love,

Molly

PS--And before anyone even asks, heck no I am not posting a picture of my half Joker-like face! I am way too vain...and I don't want to be responsible for any nightmares it might cause.

***As an update, the doctor has admitted me in-patient for IV antibiotics (Vancomycin, in case anyone is curious). The hope is that 24 hours of IV meds will do the trick, but at the most, I will be here 48 hours. Will keep everyone posted!

Ten Years Ago Today...

For better. For worse. For richer. For poorer. In sickness. In health. There is no way that the two young people pictured above could remotely comprehend the significance those words would play in their lives. These past ten years, and especially this past year, we have truly lived our wedding vows out loud. Our picture-perfect wedding has led to a real and messy and magical and hard and wonderful and insane and nurturing and difficult and awesome marriage. Parrish and I have what I believe to be a true union, one that can't be shaken, even by cancer. It doesn't mean that things are perfect. I mean, let's face it, today isn't necessarily an ideal anniversary. Parrish is still on twice a day IV antibiotics, and I was diagnosed with staph aureus yesterday. In addition to a very swollen and drooping eye and generally feeling pretty crummy, I am on some serious oral antibiotics (and now live in fear that the boys or my mom will be the next to get this). Of course I would rather be on a beach somewhere with a fruity beverage in hand, reminiscing with Parrish about our special day. But, what the last six months have taught us is that this day is about so much more than a trip or jewelry or flowers or a sentimental card. This day is a celebration of ten years of growth, a thankfulness that we are both here to share in it, and a hopefulness for more years and more celebrations to come.

Happy tenth anniversary to my sweet, determined, loving, cancer-fighting husband!

Much love,

Molly

Some additional pictures to take everyone down memory lane...documented proof that ten years ago, Parrish had more hair, and I had less wrinkles.

Happy Father's Day!

We are very thankful for Daddy around here today...and all days. I know two little boys who can't wait to get back to more of this with their Daddy!

This was three days before Parrish was diagnosed...
two little boys and a softball-sized tumor were on his chest that day.

And, I am so thankful for my Dad...especially for loving my husband and my children as his own. I know from experience just how blessed that makes Ivey, Campbell and Parrish.

A "Guh" bear hug!