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!