Cody Buker

Today is Cody’s 5th birthday and we are thrilled to report that all is well!! Cody is doing fabulously and is home celebrating his birthday. He is playing in the backyard and having cake with a few family members and friends. He will start school again after Labor Day and he will be a big brother again in January We are all so blessed and thankful to have him with us and to be able to celebrate another birthday!

Cody goes into Children’s once a month and sees “Uncle Seef” and the rest of the team. They check his blood counts and then they send him home. His red blood cell counts are normal. His white blood cell counts are also normal. His platelets are still low, but nothing like before. Normal is around 300. He used to be around 10. Now, he is around 100. This is totally acceptable (compared to where we were). To give you a sense of what 100 means, we take patients to the OR for relatively major surgery with a platelet count of 100, so it’s pretty stable.

We just hope and pray that every birthday hereafter will be as peaceful and healthy as today. I’m in Baltimore right now (so sad to miss my birthday boy), so I can’t send you pictures of him and his cake. But, I was up in MA recently and I have some photos to share from the first week of August. Hope that everyone is as happy as we are.
May God continue to bless our birthday boy.

Happy Birthday, Cody!

Love,
Auntie Mair

Mamaw bribing Cody with cheez balls

Cody, Landon, Aaron, and JD love to play out behind Papa John's house (738 in background)

I LOVE this photo!

The little boys watching the big boys play with their toys

more playtime behind Papa John's house -- so cute!

Cody is watching Daddy play with his airplane with a great view of the Buker homestead in the background (yes, he does have a 'hawk right now--hahaha)

Cody and Landon chasing Papa John

Phew-finally resting (with a little sun and little chocolate on his face, a happy, healthy 5-yr-old boy) Love you, Cody!

Cody continues to do really well. Only because it was the one year anniversary of his receiving ATG and starting cyclosporine, his team did a bone marrow biopsy. It was just a day procedure. They sedated him and put another large needle into his hip to compare the cells in his marrow with the cells that are floating around in his blood.

His bone marrow is surprisingly cellular!!!! It is very active and making lots of baby blood cells! His red blood cells and white blood cells are now at completely normal levels. His platelets are still low, though his bone marrow does make them by itself and they look and act just right. The low platelet count means that we still have to be a little careful and if, God forbid, he ever hit his head, we would need to bring him to the ER much faster than you might bring another child.

Otherwise, though, he is normal. We will continue to bring him into Children’s every month to check his blood. He is on no medications and receiving no transfusions. We don’t know if his body will stay this way forever and we can someday call this a remission. It is looking more and more possible. Right now, we are just saying that he looks really well and we are taking things as they come.

Thanks for checking in on Cody!
Auntie Mair

Cody's classroom is just the way that it was when Uncle Donovan was there 10 years ago and when Bobby was there 25 years ago

Cody and Landon on the front steps of Avon Nursery School on Cody's first day of school

Cody is very well. His counts are holding steady (hct ~30, wbc ~1.5, plat ~25) without any medication or transfusions. These counts aren’t normal, but he can live a relatively normal life this way for a long time. We will not risk the incredible dangers of a bone marrow transplant if this peaceful option exists. So, we are just in a holding pattern. He goes to Children’s once a month to check his counts and watch his progress. Bobby and Terasa remains vigilant and do bring him in whenever they have concerns, but nothing major has happened in months. He has caught a few colds and has resolved just as well as Landon. He has had some large bruises, but they do go away. Not much to worry about….

With things so good, Bobby and Terasa have decided that Cody should be allowed a normal life. His doctors were also on board with this decision. They did initial visits and educated his teachers about his condition. Other than extra vigilance, though, he doesn’t need anything else. So, he began 3-hour classes at Avon Nursery School, which is where Bobby went to nursery school It’s really sweet. Cody is adjusting well. He enjoys class and gets into things quickly when dropped off. By the end of the day, he is tired and he says he has “a hundred friends,” which we think means that he is a bit overwhelmed by the change. All in all, though, he’s doing great adjusting to a busy school atmosphere after being isolated so often for the past year. He is working on sounding out letters and simple words. He plays well and he is happy. We are all very proud of him!

Believe it or not, it has now been nearly a year since Cody was admitted for ATG and cyclosporine treatment. His treatment team at Children’s would like to do another bone marrow biopsy to see what is going on in there. It will be done in one day and he will not stay overnight. He will go in one morning, have a blood draw, be sedated, have the bone marrow tap done, and then wake up and go home. This will be done sometime between Feb 22nd and 25th. We’ll let you know if there is anything to report. Otherwise, enjoy the radio silence. We sure are!

Love,
Auntie Mair

Hey everyone!
I wanted to post some more encouraging news. Cody and I had our usual trip to the CAT/CR today for lab draws. And Codys hemoglobin is 11 which is within normal ranges!!!! His ANC is 1770 which means he’ll be ready to start preschool after the new year! His platelets are still hanging low at 23,000. These are the only cells holding us back from a full remission.
Hopefully, by next month we can see these sky rocketing!

I’d like to thank everyone who has prayed for our little miracle! Everyone has been so good to us and we will be forever grateful!

Please continue to pray for all of the other families struggling with AA (wherever they are in their battle). Also please pray for Little Marys family!
I hope that everyone has Happy and Safe Holidays! Enjoy your families and God Bless!

Love, Terasa, Bobby, Cody, and Landon

December 14th is the day after Bobby’s birthday. Last year, Bobby’s birthday fell on a Sunday and it had become clear that something was wrong with Cody. We planned to bring Cody to his pediatrician first thing the next morning and saw Dr. Blanchard at 9am. We knew right away that his blood counts were nowhere near normal. He was sent straight to Children’s that same day and the testing continued. Further testing suggested that he was in complete bone marrow failure. He was admitted and the testing continued for the next three days. After countless blood draws, many images, and 2 bone marrow aspirations, they diagnosed him with severe aplastic anemia. It took another month of testing to rule out any known causes of aplastic anemia. In the end, they called it idiopathic acquired aplastic anemia.

It has been a long year. Right now, things are blissfully boring. Cody’s counts are holding steady at just below normal levels. His bone marrow is doing this without medications or transfusions. We have no idea why or how long it will last. If we have learned anything in the past year, though, it is that life is about living in the present. While Cody is well, they have decided to treat him like a normal child. He toured Avon Nursery school yesterday and will begin preschool soon. We are all so pleased with this turn of events.

While we are living our blessings, another family is living our nightmare. Christina and Scott Eisnor buried their oldest daughter, Mary, today. Mary turned 8 recently and has been struggling with a rare form of liver cancer for the past 4 years. I know this family through my good friend from childhood, Lisa. Avon is a small town and many people have been following Mary’s story. Bobby and Terasa have been particularly affected by Mary’s passing. People with seriously ill children understand one another in a way that the rest of us don’t. I went to Mary’s wake last night. Bobby couldn’t bear it-the miniature casket, her younger sister running around like it was any other family gathering… He opted to attend the church service today before her interment.

The polarizing experiences of Cody and Mary during the past year were not lost on Bobby. He was distracted and understandably so. As much as you pray for Cody, please pray for Mary, Christina, Scott, and Kaitlin Eisnor. No family should ever bury a child.

The Make-a-Wish Foundation met with Bobby and Terasa recently and asked Cody to pick something that he would really like. He chose a playground!

The playground is great and the boys LOVE it! We have had some unseasonably warm weather lately, so they spent the weekend sharing it with friends-especially Jason and Sara’s boys, Aaron and JD.

Cody is doing great! His HCT is almost normal in the low 30’s. His white count is almost normal, around 1.5ish. His platelets are not normal, but stable in the 30’s. He is able to run around. He does get winded sometimes, but it is really not noticeable at all. He has no abnormal bruising or bleeding right. I think he gets less colds than Landon lately. So, he is wonderful! I’ve got some pictures to share, so that everything can see for themselves. Thank you to the Make-a-Wish Foundation for the playground! Cody is getting lots of exercise and fresh air these days, with very low chance of running into other sniffly kids. It is appreciated tremendously!!!

MaryAnn

Doesn't he look great?!

Too focused to smile for the paparazzi

New playground from Make-a-Wish

Hi, Lanny!

At least someone will smile for the camera! Aaron is a great playmate for Cody and Landon!

Even the big kids approve!

Ahoy there, matie!

Cody was back in the clinic on Tuesday and his counts are steadily going up. They are not quite normal, but they are high enough to allow him to continue to live a relatively normal life. His HCT is around 30. His ANC is 1400. His platelets are around 35. His body is doing this without transfusions or any medications. So, the plan for BMT is on the back seat and we aren’t even talking about it anymore. He will go in for infrequent checks, but that’s the extent of his needs for now.

We’ll act like he is any other 4-yr-old, except with a lower threshold for bringing him to the doctor for bleeding/bruising/fevers. The plan is to enroll him in preschool soon. He’s doing wonderfully developmentally and we want to give him every chance to to stay on track. He looks great! I forgot to bring my camera to Thanksgiving dinner, but I’ll see him in a couple of days and I’ll show you The extra hair is nearly gone, his teeth and gums look great, he’s a bit pale, but aren’t we all these days? We were all so grateful for our happy and healthy holiday yesterday. Bobby said grace around the table and it was just beautiful. I have never been so thankful on Thanksgiving as I was yesterday to have my family together and well.

Hope everyone else had a great day!
Auntie Mair

Things were going along just fine and then Cody developed a fever of 103.8, so Terasa brought him to the ER at Children’s on Monday morning. He ended up staying the night. They take a fever much more seriously in someone like Cody than other 4-yr-olds, although this was very likely just another virus that all kids get. They drew blood cultures and gave him some IV fluids and IV antibiotics (Ceftriaxone q24hrs). Everything came back negative, though, and they surmise that this was just a viral episode. He went home on Tuesday night and has been doing much better. Now, it’s like it never happened. Sorry that I didn’t get the post up sooner! It happened so fast and then turned into nothing, so I figured you would all forgive me. I promise that people will no when something really eventful occurs!

Take care,
Auntie Mair

I was over at Bobby and Terasa’s house last night and they look great! The boys both ran up and gave me hugs and kisses The house is really coming along and is turning into a home. They have even expanded the family to include a new dog. She was adopted last week. She is 4 years old and her name is Ruby. She has an excellent personality and is wonderful with kids (and the cat). She looks big in this picture, but she actually weighs only about 5lbs. The boys love her!

Welcome to the family, Ruby!

Cody was back at Children’s for his regular visit on Thursday. His counts are basically the same. The plan is to go back in 3 weeks and then again 3 weeks later. If the counts are still holding at pretty much the same levels in 6 weeks, we may start to talk about BMT again. He is currently on no drugs and not requiring any transfusions. He looks like his old self and he is doing wonderfully! His kidneys are back to normal, completely. So, a conservative person would say, “leave things the way they are and put him into school and start living a normal life like a a 4-yr-old.” A more liberal person might say, “he can’t live a ‘normal’ life with these counts. No gym class, no contact sports, no lots of other stuff. Let’s do the BMT and get it out of the way so that he can have normal bone marrow and start school with it all in the past.”

Neither is right or wrong. The BMT is still virtually his only means to a full recovery (miracles do happen, but him being permanently fixed without transplant would be a true miracle). However, BMT carries a 10% chance of fatality and another ~10% of chronic bad outcome. We don’t know what we will do yet. Cody’s donor has promised to stay available, however, which is great news. At least we don’t have to feel like we are passing up this chance for a perfect match. I will be sure to post if any big news happens, but I expect things to remain blissfully quiet for the next few weeks.

Thanks for checking in!
Auntie Mair

After a couple of days, everyone is settling into the news. Bobby and Terasa are leading the way. With the help of faith and a tremendous amount of grace, they are learning to live – and even enjoy – life just the way that it is. The family is overall glad that we were able to avoid the pain and misery of the BMT. We acknowledge that Cody will likely need one in the future, but we can only live in today. Bobby’s quote from facebook yesterday said it best:

Life is not about waiting for the storm to pass. It is about learning to dance in the rain.