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!

A Full House Again

Parrish came home late yesterday afternoon! Earlier than expected, which was a nice surprise for everyone. Of course, he had to return to UAB just a few hours later for his 2 hour IV infusion. I think that the doctors were so ready to get Parrish out of the hospital for fear of him getting another infection that they didn't quite think through the fact that he would have to turn right around and go back for his medicine. But, he is home...and Ivey and Campbell loved showing him their new house. They don't really remember him even being here, so they had a great time giving him the grand tour. And this morning, Ivey burst into our room just to make sure his Daddy was still there. A full house feels good to everyone.

We are working on the logistics of the infusions. Parrish has to have a 7 am and 7 pm two hour IV infusion each day for two weeks. Right now, he is having to go to the BMT unit at UAB, and since he can't drive, that means he is being shuttled back and forth. The hope is that the home health folks will come to the house today or tomorrow to train me (and my mom) in giving him the IV meds at home, at least some of the time. That would definitely help. I think the BMT folks want to lay eyes on his PICC line each day, just to make sure another infection isn't developing. When a person has a peripheral line, it is ripe for infection. And, once you get an infection like Parrish had, you are much more susceptible to more infection. So, he is going to be watched like a hawk by all involved.

In the midst of all of this, we are moving forward with Campbell's tube and adenoid surgery tomorrow. Sounds crazy, I know, but the little guy needs some relief from his ear and sinus issues. And, really, there isn't any good time for it to happen. So, I'll be at the children's hospital tomorrow with him. Prayers for a very smooth surgery. Tubes and adenoids are not at all a major surgery, but he will require a breathing tube because of the adenoid removal. And, handing your baby off to anesthesia is not easy, no matter how "routine" a surgery might be. In my world these days, no procedure feels routine. So, please pray for sweet C-man and for his worried mommy.

And, please continue to pray for Parrish. He is out of the hospital, but definitely not back to his old self. He is trying really hard, but still tires easily. And, he is still peaked. All to be expected, but I know he is ready to feel better. The continued antibiotics will help, as will rest. I pray that he will listen to his body and not feel the need to pretend to feel better than he does. 

Many thanks for all of your thoughts, prayers, emails, calls and texts this past week. We have felt so much love and support, and we couldn't have made it through this scary time without all of you.

Much love,
Molly

Moving in the Right Direction

Just a brief update to let everyone know that after several scary days, Parrish is moving in the right direction. Yesterday afternoon seemed to be the real turning point. He even ate some dinner last night and put on some real clothes. Parrish is still battling some headaches, but the doctor thinks that those will begin to subside tomorrow. 

They have determined that the bacteria that caused this infection is MRSA staph aureus. It is likely hospital acquired, according to the doctors. This is a highly resistant staph (one of the "super bugs") so they have to treat it with very aggressive antibiotics. Parrish is continuing to receive IV antibiotics in the hospital. Hopefully tomorrow, he will receive a  PICC line (a peripherally inserted central catheter) where he will receive IV antibiotics for the next two weeks. Once he is discharged (maybe Tuesday), he will be able to go to the outpatient clinic to receive the IV antibiotics (the infusions will be twice a day, for two hours at a time). However, they won't discharge him until his blood cultures have been negative for 72 hours and he is symptom-free.

I know that everyone has a million questions, especially relating to what this does to the transplant timing. I don't have a lot of answers right now. The doctors are too focused on getting Parrish through this infection. I do know that he has to complete the antibiotics course and have negative cultures once off of antibiotics in order to be transplant eligible. In addition, we know that the stem cells collected a couple weeks ago are negative for any infection (they are cultured immediately upon collection). So, that is good news. 

Thanks for all the thoughts and prayers over the last few days. I'll keep updating as I have more news. 

Love,

Molly

A Major Curve Ball

Just when I thought we might be seeing a glimpse of normalcy...getting unpacked in a new house, having a few weeks as a family before the transplant, settling into a summer routine...life threw us a major curve ball.

Yesterday, Parrish was admitted to the bone marrow transplant unit for septic shock. I had thought that Parrish seemed a little "off" for a couple days...I kept asking him if he felt okay and he said yes. But, he was paler than usual and just off; I don't really know how else to put it. Yes, we were in the midst of moving and it was generally chaotic, but he was just checked out, forgetting things, and generally out of it. On Tuesday morning, he woke up with red spots/lesions on his legs but nothing too alarming. Then, Tuesday evening, he started with a bad headache. He can't take any ibuprofen, Tylenol or the like because they are blood thinners. So, he just went to bed early and thought sleep would help. He was up several times during the night with his head, and at 5:45 am, he had a vomiting episode because of the pain. He slept for a bit after that and took a pain pill around 8 am. I called the transplant unit, and they said to bring him into the outpatient clinic. I told Parrish we needed to go in. I walked out of the room, and Parrish got up and walked into our bathroom where he collapsed on the floor. I ran in and got him up and sat him on the toilet. There, he started seizing. I screamed for my mom to call 911, and the paramedics where there in minutes. The seizure had stopped by that time but Parrish was not responsive. They checked his blood pressure, and it was 50 over 10. (Yes, you read that correctly.) And, he had a temperature of 102. As the paramedics started Parrish on IV fluids in our bathroom, I called the BMT clinic to let them know we were headed to UAB's emergency room. The paramedics carried Parrish out of the house on the stretcher and got us loaded in the ambulance. (As a side note, can you imagine what the neighbors thought? We haven't even been moved in for 48 hours and already someone is getting carried out on a stretcher?!)

At the ER, they took blood cultures and started Parrish on high dose antibiotics, in addition to continuing IV fluids. They took a chest x-ray and did a cat scan of his head (because of the seizure). The hematology/oncology folks and the BMT unit were in close contact trying to determine just what was going on. Once they got Parrish somewhat more stable, they admitted him to the BMT unit--the in-patient side of the unit. Once he got there, a team of doctors and nurses assessed him and decided they needed to remove the Hickman catheter (his IV line) in his chest. The line appeared red and inflamed and likely infected. The doctors removed the line last night, and as they did, they immediately saw pus. Clearly an infection. Throughout the evening, Parrish had continued fever, more vomiting, chills, and vacillating blood pressure. His oxygen levels also dropped, so they put him on oxygen.

This morning, all the blood cultures, taken from different spots, came back positive for a staph infection. We don't know exactly what kind of staph it is yet--it needs to grow on the cultures more. But, the line they removed last night had staph inside of it. So, they are also removing the medi-port that is under his skin (and was used for his chemotherapy treatments) because it is likely infected as well. That requires a surgery, so we are just waiting for them to come and get him for that. We don't have an exact time, but just as soon as they can work him into the schedule. He continues to have some fever, but the vomiting is better and his oxygen levels are better. His blood pressure seems to be normalizing as well. He still feels pretty crummy, though. In Parrish's words, he "feels like poop." Very clinical.

An infectious disease team is also now involved because of the sepsis and the seriousness of the infection. The doctors want to make sure that once they know exactly what kind of staph it is, that they treat it with the correct antibiotics. Until then, they are just using a trio of antibiotics to try and fight the infection. They will also do an echo of Parrish's heart to make sure the infection is not in his valves (they will either do an ultrasound or put a tube down his throat, that has not been determined yet). Depending on the type of staph we are dealing with, Parrish could be in the hospital for a while. And regardless, this infection will push the transplant date back. He'll have to be infection free for a while, get a new line placed and likely have more pre-transplant chemo because of the lapse in time. But, right now, no one here is even concerned about what this does to the transplant...they are just concerned about getting this infection under control.

Needless to say, the last 48 hours have been terrifying. And, after ten days of Ivey's stomach bug, 5 long days of moving and now this, we are all drained. I mean, a sick child can be a lot to deal with, a move is a major life event in and of itself, and a husband with a massive blood infection. Well, it is just too much to really even comprehend right now. Good thing I don't have time to process it.

Of course, there are things amidst all of this chaos to be thankful for. First, I am so, so, so thankful that the boys were not at home when we had to call 911. They had just left with our nanny to get out and about. I truly have no idea what I would have done if Ivey and Campbell had to witness that. I can barely go in my bathroom without re-living the scene. So, I can't imagine if they had been there. Thank goodness my mom was there and for all she did (and continues to do). And, thank God that the seizure didn't happen while we were en-route to the BMT clinic...and that he didn't fall down the stairs in our house...and that I didn't just let him keep sleeping. A lot to be thankful for. Not to mention my dear friends who met us at the ER, who went to our new house and unpacked all the remaining boxes, who stocked our refrigerator, pantry, laundry room and more. So, so, so much thanks.

But also, so much fear. These are the sorts of complications that remind all of us that no matter how well Parrish appears to be doing, he is still really sick. It is easy to forget that when you see him at work or with the boys or grabbing a beer with buddies. Most days, I think he just moves through the pain and sickness. He is a really good faker. But something like this totally knocks him off of his feet. And, yesterday morning was really, really scary. I can keep my sense of humor and positive attitude through a lot of things, but I'm having a very hard time mustering those right now.

Please pray that the doctors can get Parrish's infection under control and that he will start feeling better soon. That it won't mean an extended hospital stay. That the boys will be okay while he is gone. That we can all have the strength and energy to get through each day as it comes.

Much love,

Molly