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

Never a Dull Moment!

Last Friday and Saturday, Parrish made it through two long days of stem cell collection. He was totally wiped out after Day 1, and with good reason. It took eleven long hours to get a little over 2 million stem cells. Saturday was not quite as long, and he seemed to do much better (maybe it also helped because he knew what to expect). Parrish had to return to UAB on Sunday for more labs, but after that they gave him a break. He managed to skate through the collection process without any blood transfusions which was good, and just needed some electrolyte replacements along the way. We learned yesterday that they collected a little more than 4.6 million stem cells. They need 2 million stem cells for one transplant, and the doctors like to freeze enough stem cells for a second transplant were it to be needed down the road. So, no more collection needed. Hallelujah! We should hopefully get the June transplant calendar soon, but are planning on mid-June for the transplant items to begin.

 

Poor little Ivey is still plagued by what the doctors think is just a really terrible stomach bug. (In case you are counting, we are on Day 8 of this...it has been a looooooooong eight days. I will spare you the gory details.) Our little guy has lost almost 5 pounds and is pretty pitiful. I almost ended up at the ER with him last night because of dehydration. Thankfully, we escaped that excitement. Today, he seems somewhat better, though, so I am hoping he is on the mend. Miraculously, no one else has come down with the bug (yes, I am knocking on wood!).

 

We take possession of our new house on Saturday, and the movers come Monday. So, between now and then, it is a mad flurry of packing, organizing and getting things ready for our new abode. The boys seem super excited about the new house which gives me peace about moving. Their excitement is contagious.

 

As you can see, never a dull moment around the Taylor house these days!

Treading Water

In life before cancer, there were many days when it felt like I was treading water, just trying to keep my head up and make it through the week. Our new life (especially the last few weeks) has taken that feeling to a whole new level. No matter how hard I try, some days, I feel like I can't keep all of us afloat. I used to teach swimming lessons to children, and I remember teaching them that treading water is about slow, steady moves. The faster and more frantically that you move your arms and legs, the more likely you are to tire out, get water in your face and go under. It isn't how fast and furious you move. Keeping calm is the key to staying afloat.

 

I think that same strategy plays out in life. In general, getting panicky or frantic does little to help any situation. The last few weeks, though, I have fast and furiously tried to keep our little family afloat--looking high and low for a rental house, cleaning out the attic and organizing for packing, trying to keep up with work, attending a myriad of end of school activities, being Parrish's medical advocate, playing nurse and more. I definitely hit frantic mode. Someone at work even commented that I "seemed a little off." Major understatement. Thankfully, I've managed to dial it back in the last week or so, helped in large part to the boys going with my parents to Memphis for a few days last week. The boys had a blast, and I could focus on getting some things checked off the ever-growing to-do list (and spend some quality time with Parrish). It was much needed, especially in light of the turn this week has taken.

 

The best news of this week is that we found a house to rent. It is a wonderful house in a precious neighborhood, walkable to restaurants and parks, convenient to work and the hospital. It feels like a happy house to come home to. Since we are going to be spending a lot of time at home over the next year while Parrish recovers, that is important. It is a huge weight off of my shoulders. Honestly, the house hunt has been especially trying. Almost too stressful to even blog about. I wish I could say that I remained vigilantly faithful that something would turn up. That isn't exactly true. I was scared...scared that we made the wrong decision in selling our house, scared that I wouldn't be able to provide a happy home for the boys, scared that I wouldn't be able to pack us, move us and take care of Parrish in the hospital. I was just scared. As is usually the case, just when I had really reached the lowest point, a house turned up (well, I found it on Craig's List, it didn't just drop from the sky). I do think it was divine intervention, though. God realized I had hit my limit. He also knew that we needed some good news this week.  

 

Yesterday, I took the boys to the ENT. The boys, but especially Campbell, have battled what seems like one cold, sinus infection or ear infection after another. I quit counting how many antibiotics Campbell has been on in the last six months. So, the pediatrician decided that we needed to see a specialist. Turns out, Campbell's tubes in his ears aren't working and need to be replaced, and his adenoids are very enlarged and need to come out. The doctor wants to do the surgery as soon as possible. He suggested today. Of course, I explained that today really wouldn't work because I was supposed to be with my husband at UAB for his stem cell collection for his bone marrow transplant. As the doctor and nurse tried to pick their jaws up off of the floor, they began suggesting alternate dates. First week of June? Well, we are likely moving. Second week of June? Um, sure. As long as I can cancel it if that is the day I move my husband onto the transplant floor for his month long extended-stay vacation. So, we scheduled Campbell's surgery for June 12th; they assured my I could cancel if the need arises. Oh, and I should also mention that Ivey needs his tubes surgically removed (they have been in for 3 years). They said we should wait until September though, since he can't swim for three weeks after removal. The doctor asked if I wanted to go ahead and pick a date in September. I told him that I could barely see past tomorrow, so we should probably hold off on September dates. He didn't disagree.

 

You just have to laugh, right? I mean, I couldn't make it up. The week gets better though...

 

This morning, at 5:45, I had just gotten back in bed (I had been in Campbell's room since 3:30 am...this is not an unusual occurrence...we don't sleep through the night much in my house). I was lying there thinking that I should just get up and start the day when Ivey walked in saying he was ready to get up. I tousled his hair which was sort of sticky. I asked him why he was sweaty, but then it dawned on me...and then I smelled it. Yep. You know where this is headed. There was throw up...and it was all.over.him. Hair, pajamas, face (not to mention his bed). Turns out, according to him, he had thrown up three times in his bed but never called out for me. Not sure how I didn't hear it happening on the monitor. But, it was clear he had been sleeping that way for a while. Now, I can handle a lot of things. Chest tube? No problem. Shots at home? Easy. Blood, guts, broken bones? I've got it. But throw up...not so much. It is my weakness. So, needless to say, the morning didn't start well. I'm hoping it was just an episode and not the stomach bug (although it is going around). Ivey seemed fine as the morning went on, and no one else has come down with it. Yet.

 

As for Parrish, he has made it through several more appointments and tests and then had chemo last week. There have been some bumps along the way on the administrative end, but we (meaning, me) have navigated those issues. (I have chosen carefully when to put on my manners...and when to take them off.) Parrish has had a rough couple of days. The Neupogen is really wrecking havoc on his bones and joints and causing him a lot of pain, especially in his back. This morning was tough just getting out of bed. And, his blood work wasn't where it needed to be yesterday, so he isn't having the stem cell collection today. That seems to have really defeated him. He prides himself on being an overachiever in the cancer department...constantly surprising everyone with his response to chemo or his ability to push through whatever is thrown his way. Clearly, he has no control over how many stem cells he produces, and he understands that. But, he was just mentally ready to get the show on the road as far as the transplant goes, and he feels like he has had set back after set back with it. I get it. It is frustrating, to say the least. And, I hate to see him discouraged. The plan is that he'll have more Neupogen today (and more blood work). If the blood work shows enough stem cells, then he'll do collection tomorrow and Saturday. If not, he'll repeat the Neupogen tomorrow and hopefully do collection on Saturday and Sunday. So, while a lot of you will be at the lake or the beach celebrating Memorial Day, we'll be at UAB kicking off the start of summer. Fun times.

 

As you can see, it has been one of those weeks in the Taylor house. For me, I am trying to move more calmly through the chaos and setbacks, and at the same time, not lose sight of those utterly insane moments where laughter is just about the only appropriate response. This week, please say some prayers for stem cell growth. Once the stem cells are collected, Parrish can quit the Neupogen shots and thus, quit having so much pain. And, please pray for continued peace of mind and strength of spirit as we tread the waters of moving, Campbell's surgery and Parrish's transplant plans. 

 

Much love,

Molly

 

 

 

Short and to the Point

A really quick update...

Parrish got through chemo last week and started the Neupogen shots at home on Thursday. They are not fun (for him or for me!). If things progress as planned, he should undergo the stem cell collection process this Thursday and Friday. We won't know for sure until after his blood work on Wednesday afternoon. If he has not produced enough stem cells, then he will continue with the shots for a few more days. So, please pray that the medicine is making his body produce millions upon millions of healthy stem cells.

In other (really important) news...WE FOUND A HOUSE TO RENT! Hallelujah. It is a perfect house for a family, and we are excited about moving in around the first week of June.

More to come on these fronts and more, but wanted everyone to know about the collection this week and that they can call off the house search (thanks to all my many, many house hunters!).

Love--
Molly

A Change in Scenery (and in Plans)

My lack of posting is a clear indication of the craziness around these parts. As of Tuesday, we are officially no longer home owners. We are currently renting back from our buyers and still looking for a house to rent for a year while Parrish undergoes his bone marrow transplant/recovery. Rental houses are much harder to come by than I thought they would be, and we can't be just anywhere. We have certain needs relating to our two small children and Parrish's medical issues that make finding a rental even more complicated. But, I am keeping the faith (and frantically searching). I am also somewhat in denial about packing, but super excited about lightening our load. I secretly enjoy moving because it gives me an excuse to de-clutter my life. Goodwill better get ready because I've got lots of goodies coming its way!

A couple weeks ago, we did manage to escape to the beach. I had been lamenting the fact that the boys would not get any sort of vacation this year, and honestly, everyone desperately needed a change of scenery. So, we literally decided on a Friday morning to just go (and to leave the next day). Of course, cancer can get in the way of even the most last minute plans (a lesson I keep having to re-learn ). Parrish ended up not being able to go with us because of an infection in his foot. He got a mosquito bite or scratch on his foot that got some bacteria in it. A healthy person wouldn't have even realized it, and the body would have fought off the bacteria. Not so with Parrish. Because his white blood cell counts were so low, his body couldn't fight off the bacteria. He ended up with cellulitis in his foot that the doctor treated with IV antibiotics, followed by oral antibiotics. Trust me when I say, it was not pretty (and still isn't). After two full weeks of antibiotics, the infection is better, but still not completely gone. Something like this infection reminds all of us just how fragile Parrish's body is. It is easy to forget sometimes because he appears to be so highly functioning most days. But, even a small infection can wreck havoc on his body.

So, what about the BMT?

Well, we met with the BMT folks on Monday. The doctor wanted to see Parrish's foot, and we were supposed to receive the transplant schedule (with things to get started this week). Note: "supposed to." The doctor was concerned about the infection in Parrish's foot not being completely healed. So, he ordered another week of antibiotics. That means the BMT protocol gets pushed back a week. This wouldn't be that big of a deal, but it also means that Parrish has to have an additional round of chemotherapy. Typically, a transplant candidate has a pre-transplant dose of chemotherapy (in addition to the high-dose transplant chemotherapy). Parrish's third round of treatment was going to count as his pre-transplant chemotherapy. But, now, too much time will have passed between his third round and the start of the transplant process. So, he has to endure another round of chemo. Ugh. The doctors are hoping that they will be able to do this extra round out-patient, but we won't know for sure until tomorrow. In addition, Parrish will have to repeat all the pre-transplant tests, because he will have had more chemo. This just draws out the process even more. Not really the news we wanted to hear.

But, we have taken a lot of deep breaths since Monday afternoon, and are both in a little better place about things. Given the setbacks, Parrish likely won't go in-patient until mid-June, but the start date for all of the pre-transplant items will be mid-May. On May 13th, he will go in to have a special transplant IV placed in his chest (on the opposite side of his current port). The BMT folks use an IV line that runs outside the skin, not under the skin like his current medi-port. With transplants, you have to minimize all risks for infection, and under the skin ports can in small cases cause infection. He will have some light sedation for that placement, but it is done as an out-patient procedure. On May 14th, Parrish will have a follow-up appointment with the BMT doctor, and then on May 15th, he will have his pre-transplant chemo dose. On May 16th, he should start the seven days of Neupogen shots which will cause his body to produce a large amount of stem cells. These shots are given at home (by "Nurse Molly"). Then, on May 23rd and 24th, the doctors will collect the stem cells. Again, this is an out-patient procedure done in the BMT unit. Parrish will be hooked up to a special machine that will take his blood out, filter the stem cells for collection, and then return the blood to his body. They attempt to collect a minimum of four million stem cells, so depending on how many are collected at a time, it can take 1-3 days.

After that, there is just a waiting period (you must have a minimum of four weeks between the pre-transplant and transplant chemo doses). So, the doctors will let Parrish recover from the pre-transplant chemotherapy and the collection process. Then, mid-June, Parrish will begin the transplant chemotherapy regimen and will likely go in-patient around that time. This part of the calendar has not yet been determined, so I don't have actual dates. He will spend three to four weeks in-patient on the BMT floor. With the delay in the schedule, it means that Parrish will definitely be in the hospital for  our 10 year anniversary and likely for both the boys' birthdays. Of course it isn't anyone's fault, and it is just the nature of the beast, but on top of everything else, that realization is a hard one to stomach. Most of our friends have celebrated their ten year anniversaries with a fabulous vacation...Parrish gets an all-expense paid trip to the BMT unit. Not exactly what he (or I) had in mind. But who knows, maybe Highlands will do carry-out dinner for two on the transplant floor!

Whew. A lot for one post. But hopefully that catches everyone up. As we head into the next few weeks, we would ask for prayers for Parrish's infection--that it will heal more quickly and completely so that the BMT protocol can begin, for a rental house to work out--so that we can have some clarity on where we will be living for the next year, and for peace and strength for us and our sweet boys.

Much love,
Molly


**A few beach highlights...as you can see, this change in scenery brought a lot of much needed smiles and laughter. (Thank you, thank you, thank you to my Mom for helping with and making happen all the (crazy exhausting!) fun.)

Campbell LOVES the beach!

Ivey loves just about anything related to the sea and its creatures.

 

Best buds.

Sunset on the beach.

My digger men!

Thank goodness for a heated pool!



What a change in scenery!

Blonde-y!

Either going in for a hug or a bite...not sure which.

 

My two boys. This photo will help get me through the next few months!