Day +85

Today is day 85 post transplant. In some ways, it seems just like yesterday that Avery got his new cells, but in other ways, it feels like an eternity. I haven't really posted details about Avery's progress lately. His stats go up and down daily, which makes it difficult to keep up with. I find myself growing impatient, because I thought we would be so much better at this point. But for those of you who ask and pray, here's the latest scoop.

Avery's blood counts post transplant were low, but pretty steady. But over the last 6 weeks or so, they've been dropping lower, and he's been requiring more frequent transfusions. It seems he is going back to his old tricks...which he shouldn't be. Engraftment studies show that he is still 100% grafted, and that the cells being made are all donor cells, which is great! Recent testing shows that the reason his counts are not holding, despite proper production, is that he is now creating antibodies that are destroying the new cells. So, the doctors are trying some new drugs and making some changes to his current treatments to try to fix this. His T-cells have been suppressed with drugs since his transplant so that his body wouldn't reject the new marrow. The T-cells help keep the B-cells in balance, and the B-cells are the ones attacking the new cells. So, we're easing up some on the suppression of the T-cells in hopes that they will help keep the B-cells in line a little more. He's also getting a new drug infusion that is going to start killing his B-cells. The big problem with that is that B-cells play a large role in the body's immunities, so his immune system, which is weak already, is going to essentially be wiped out again. This makes him very susceptible germs.

The second issue we've been dealing with has been a virus count that has been pretty high. Shortly after transplant, Avery tested positive for an adeno virus. We got that one pretty much licked, and now he's been battling the BK virus for about a month. So, he's been receiving extra antiviral infusions during the week to try to get rid of that virus. His count has gone down a little, but it's still quite high (150,000 at the last count).

This antiviral drug and a few other meds he is on, plus the whole transplant process itself is pretty harsh on the kidneys. Unfortunately, Avery went into the process with only one fully functioning kidney. His kidney function was great prior to transplant, but recently has been dropping more and more until the doctors have decided it is requiring some extra treatment. He's taking a new drug that is supposed to protect the kidneys (unfortunately it's harsh on the liver, but we're just watching those numbers now), and doctors have discontinued some other infusions he was receiving. They've also added fluids following some of his infusions and to his TPN he receives every night to help keep the kidneys working efficiently.

For whatever the reason may be, Avery has completely stopped eating. He has always been a reluctant eater, and through the transplant process he had good and bad days. Even when he didn't want to eat, I was usually able to force a little bit in. These days, his lips are locked and teeth clenched. He literally refuses ANYTHING. For all of you moms out there, you may understand how frustrating this is. It makes me feel good to know my kids are eating well; when they're enjoying a meal and they're bellies are full, I feel content as well. So maybe you can imagine the frustration that I feel that he hasn't had anything on his stomach in weeks. His TPN goes in his central line straight into his veins, and his NJ tube is placed in his small intestine, not in his stomach. Sometimes I hear his stomach growl when I'm holding him, and his lips are peeling white skin from them. I know that eating is not a priority right now for the doctors. They want to see his blood counts start stabilizing, and I do too, but for me, this whole eating situation is very worrisome and sometimes frightening. We worked so hard for a year and a half in feeding therapy to get him to eat what he did, and we could always count on the fact that he would take PediaSure in a bottle if he wouldn't eat. Now, he absolutely refuses a bottle. I just started yesterday attempting tube feeds at an incredibly low rate (5 mls/hr) to see if his gi tract can start tolerating it. When we've tried before, he starts having terribly loose stool. I'm hoping and praying that we can start increasing his feeds a little and that his belly will finally start to heal.

Our family is still doing our best to balance everything. Being at the Ronald McDonald House is nice in some ways, but it is so much work not having a nurse or aide to help out. Avery's care literally is a full time job, preparing his TPN and getting it going for 14 hours a day, 10 doses of oral meds daily, 2 iv infusions daily, and now tube feeds as well. Plus, he goes to the hospital 3-4 days a week...and we're talking 8 hour days of infusions. Most of his appointments are at 7:30 a.m., so my poor boy gets woken up, loaded into his wheel chair, snuggled under warm blankets and his mask, and there we go walking across the street to the hospital. Not to mention that with 2000 mls of fluid going into him at night, despite wearing 2 diapers and constant changing, he still pees through and ruins all of his bedding every night, which creates enormous amounts of laundry. We're spending a small fortune on diapers, but they just don't make diapers or waterproof bed pads to keep up with all of this. I would love to have all my kids here, and I do sometimes, but it's too hard with one person. Emerson is at that stage where she cries as soon as I'm out of sight, and of course needs the normal bottles, diapers, and entertaining that any six month old requires. Unfortunately, Avery cries every time she does, and sometimes they both need attention at the same time. Needless to say, this room can get very noisy!!

I'll be honest, there have been a lot of days recently where I felt like I was sinking fast. I have a hard time holding onto my hope that things are going to get better at some point. It takes a lot of prayer and mental strength to force myself to refocus and take some deep breaths and believe that we're going to get through this. My husband told me about a conversation he had recently with someone...why someone would say this to my husband knowing the enormous burden he's carrying right now, I don't know...but this person said that he wasn't so sure there was a "God's will" or a plan in life. He seemed to think that we're all victims of just randomness. For me, believing that God is sovereign, and that He is working in all of this is the only thing that keeps me sane. I know that God's ways are higher than mine, and I choose daily, sometimes hourly, to trust Him. At night sometimes when I actually slow down to let my mind wander, I feel that tight knot in my chest that feels like it's just crushing me, and I have to start praying for peace. Sometimes I second guess myself on whether or not we did the right thing. Of course it's too late, but sometimes I think we might should have just kept doing what we were doing until we couldn't anymore and prayed for a miracle.

I know I probably sound overwhelmed. That's because I am. But, I'm making it a day at a time, and sometimes when I look back to the days behind me, I can't believe I've made it through. I'm trying so hard to believe that one day I'll look back on this time, on my weakness and crazy-emotional days, and I'll see God's grace sustained me.

Please continue to pray and request prayer for Avery. I know that with his transplant being over, some people ask, "Did it work?" and think that it's over with. I'd love to see ANY improvement -- his counts start stabilizing, this virus go away, and Avery start to eat or drink something. I know that sounds like a lot, but I also know that I serve a big God who can do exceedingly more than I could ask or think. Sometimes I find myself saying, "God, just do this one thing for me, and I won't ask anything else." But God isn't limited. I sincerely appreciate the prayers and support for our family. We're really blessed with some great folks who have been helping us carry this impossibly heavy load.

Here's my little guy not looking so thrilled about being at Day Hospital. Notice his hair is growing back, and thanks to some of his meds he's on, he's getting some pretty serious eyebrows as well!


Love,
Bethany

Beautiful Moments

In my last post, I talked a little about the stresses that go along with being a mommy...at least for me. I made the analogy that it was a little like climbing a mountain, and it sure has seemed like I've done a lot of climbing lately. But I thought I'd take just a moment today to focus on a few of the "appreciating the view" moments, because I have been blessed with some recently.

I went home from the Ronald McDonald House Monday night, and Tuesday morning, I got up and got Bryson dressed for school. He attends the afternoon session of Young Fives. Since I have basically no groceries in my house and it's senseless to keep any there with us spending so much time in Cincy, I decided to make a run to Bryson's all-time favorite restaurant...yes, I'm talking about McDonalds. He got a gift card there for Christmas, and we hadn't used it yet, so we made a date of it. Bryson, Emerson, and I went inside and to the counter, and Bryson said, "Go sit down, Mom. I'll order your food." I took a couple steps back so he could feel like he was in charge, and he ordered my number 10 with a coke, and for himself "a strawberry banana SMOOVIE with a plain cheeseburger, please." It was so cute! He was so serious, and his little head was about the same height of the counter. I let him slide the card through and pick our seat. He picked a sunny spot (something he has gotten from me), and he said, "I'm gonna sit by you, Mommy, because you're my sweetie pie." For the rest of our meal, he used his best manners and bragged about taking me out to dinner. Yes, I was proud. And now that I think of it, I may make this a regular event for us. It seemed like just giving him that little bit of independence allowed him to use some of the skills that Phillip and I have tried to instill in him and also a chance to bond with me, of course! A few minutes later he was like, "Um, Mom, did you forget it's QPT day, so I don't have school?" Really, kid? I don't know what day of the week it is most of the time and hadn't had a chance to look at his school calendar.

That same day, we had some freakishly warm weather for January. It was 50 degrees, and Bryson just had to play outside. When we got home, he went to his faithful pile of dirt by the side of the house and began playing whatever imaginary games he plays. Before long, he came in the house with a cup declaring, "Mommy, I found me a pet!" I looked in the cup and saw a slimy earthworm. Yuck. But he claimed he saved its life by rescuing from the cold dirt. He took it to his room, and I figured I'd talk him into taking it back outside later. But that was not to be. He came downstairs with a serious look on his face and said, "Mom, something tebbible (terrible) has happened. I was giving my worm a bath because she had dirt on her, and she went down the drain." I comforted him, but was also a little grossed out to think that a nasty earth worm is in my drain where I get ready every day. Needless to say, I sanitized the sink before I used it next.

Last night, I brought Bryson and Em down to Cincy with me. Phillip had to leave so he could work today, and since my normal helpers were going out of town for a funeral, I was solo with my 3 munchkins. At home, that wouldn't worry me much, but in our little room a the RMH house, there's not much space. I have Em's bed in one corner and Avery's in another, and Bryson sleeps with me. I was so worried about Em and Avery waking each other up that I had a hard time sleeping. Avery was fussy, so I was trying to shush him without waking Em, because Avery cries everytime she does, and I didn't want wake the whole floor here. We survived the night. I think everyone woke feeling rested but me, but I was thankful for the chance to have all three of my children under one roof, snoring and all.

Bethany

Musings on Motherhood :)

There are some moms in the world who seem to have it all together. Unfortunately, I'm not one of them. Don't get me wrong; I love my children with every ounce of strength in my body and try everyday to make sure all of their needs are met and they feel loved, but there are many times when I wonder what in the world I'm doing wrong and if my children will indeed grow up to be the God-fearing, productive citizens I hope they will become. This separation over the last few months has only complicated things.

Bryson has grown more and more independent...which of course, is a good thing considering he is away from his mom and dad a lot of the time, but it can also be a problem when I say "No" and he has ideas of his own. Emerson seems like a new baby every time I get to go back home with her. Her sleeping habits and schedule are different depending on who has been watching her and how she's dealing with whatever new phase she's in (and you know with babies, it's always something new). What worked to calm her down the week before may or may not do the trick a week later when I see her again. I always feel like I'm struggling to catch up with her and keep Bryson on the straight and narrow. Don't even get me started on Avery; he is in a league of his own!

And I think one of the biggest battles I fight as a mom is guilt. I'm not sure if that is normal or if I just set really unreasonable expectations for myself and then react poorly when I can't achieve them, but I often feel like I've just not done enough or handled the situation well enough. I think if only I knew the trick to disciplining a 5-year old. Am I too firm? Too relaxed? Not consistent enough? Am I damaging him somehow that will affect him forever? What about my little girl who I just feel heartbroken to have to leave her and miss so much? My sister and mom sent me a text of her licking a potato chip and then eating mashed potatoes, and I started bawling. She just seemed so big, and I wasn't there giving her those first bites.

Yes, I realize that I might sound like a raving lunatic. I promise, I try so hard "not to sweat the small stuff" as some parents advise, but that's difficult for me!

The other day as I was getting on an elevator at the hospital, I witnessed something that made me laugh and wince at the same time. There was a father with his hands full of bags of food and two little boys, one who was much too big to be riding in an umbrella stroller (considering he clearly could walk) and the other who was trying to push his brother in the stroller. The one in the stroller wasn't buckled in and wasn't cooperating. He was whining and begging for something as he stretched forward in the stroller. His brother kept pushing as his brother fell out of the stroller onto the floor, taking the stroller and his brother down on top of him. Then the yelling and screaming really started. There was a line of people waiting to get on this elevator, and a few like me, chose to wait for the next one rather than attempt to ride a few floors with them. I actually winced as the crash occurred and then watched in amazement as the dad really didn't even seem to notice. He just stepped over them, got on the elevator, and waited for his wild boys to join him.

My first reaction was to think, "Come on, Dad; get your boys under control." And then my next thought was, "Don't judge, Sister. Yours aren't so great either." I saw some of the folks standing around show expressions that clearly were condescending toward this rowdy bunch, and I couldn't help but wonder if they were from the group I mentioned earlier...the ones who have it all together. Perhaps their children are calm, well-behaved, and good-listeners. But as for me, I have learned to never say never. All those times before I gave birth when I saw children do things and vowed mine never would...I'm recanting now! Instead of being frustrated at the screaming child in the restaurant or grocery store, I usually just feel sympathy. I have been blessed with the fact that Bryson has never been a fit thrower. I'm not sure why, but he has never put himself in the floor or screamed or kicked, but even when I see that occur, I don't judge.

Now if you know me well, you might think it's strange that if I were able, I'd love to have more children. I'd like a house full! No, I'm not a massacist or a glutton for punishment. I read the other day a comparison to parenting that really struck home with me. It compared parenting to mountain climbing, and the absolutely grueling, life-threatening, and dangerous experiences that a climber places him/herself in as he/she trains for the climb and then actually climbs. Along the way there may be great perils, but there are also some amazing views. Finally, at the top of the mountain the climber has reached a point that allows him or her to feel such exhiliaration and sense of accomplishment, and it isn't long until the climber is planning and training for the next harrowing climb. The crazy days of being a parent are similarly offset by the joys that come along with it.



But until I figure out the secret or find a magic wand, I guess I'll just keep on climbing, enjoy the joyful moments, and endure the not-so-joyful ones. :-)

~Bethany

Good Riddance 2011; Hello, New Year!

Well, we made it through Christmas, and it was a lovely day. Phillip and I were up early (around 7), creeping around, trying to get everything ready for our Christmas morning. He had to slip out to the van and get "Santa's" gifts since we were limited on hiding places in our room at RMH. Then, around 7:30, Phillip and I sat on the couch and listened to our babies snore. Finally, around 8:15, we started being exceptionally loud on purpose, trying to rouse them. Bryson sat up and rubbed his eyes, still half asleep. I said, "Bryson, Santa came last night," because there was some concern the night before that he wouldn't know we were at the Ronald McDonald House and not at home. He said, "Yeah! I knew he would find us!" Then chaos ensued. Bryson got to "help" open all of Avery and Emerson's gifts as well as his own. Our little room was a wreck! The best part was just having all three of my kids together. *Bliss*

The next morning, Avery started having blood in his stool. After the second one, we called the BMT doctor, and they had us bring him back to the hospital. He was readmitted for 5 days. His bleeding got worse that evening; at one point, he was just passing straight blood. Then, the bleeding stopped, and after a few days, he was discharged once again.

Now we're creeping up on a week since his last discharge. This is by far his longest time out of the hospital, and I'm hoping it's an indication that he is on the mend. Right now, I'm at the Ronald McDonald House with Avery. My other two kids are at my house with my mom, and Phillip went back to work this week after a month off. Avery has appointments almost daily across the street at the hospital that take up much of the day, and then my time at the RMH stays busy prepping and hooking up his 18 hour TPN, giving him 2 IV infusions of cyclosporine daily, and 5 meds through his nj in the am and 4 in the evening. He's still not eating or drinking much, but I sure spend a lot of time trying to feed him.

I have to say that this year has been difficult for sure. Besides the birth of my precious Emerson, my year has been filled with much stress and many disappointments. The separation from family has been so tough for me. I'm not sad to see 2011 come to an end. I can truthfully say that God has gotten us through...miraculously, because there is NO way Phillip and I could bear this on our own.

I'm looking forward to marking the next few months off my calendar of 2012 since one thing that has kept me sane is looking ahead. Surely, this year will be one that life starts to regain some normalcy and Avery's health begins to improve! I'm ready for a new beginning. But, I've learned that you never can tell what lies just around the corner for you. Thankfully, God knows. He's already there, and I'm trusting that He will provide the grace we need.

Happy New Year!
Bethany