Update on Avery

Today, Avery received his second platelet transfusion in 9 days. His platelets also reached a new low of 11. For those of you who don't know, normal range is between 150 and 450 (and platelets are measured in thousands). Thanks to a blood transfusion last Thursday, Avery's hemoglobin was great today (13), but his white count was low. So, it seems we are approaching the day that we have dreaded but suspected may come.

Avery's initial diagnosis of Diamond Blackfan Anemia isn't consistent with all of his other symptoms, and it seems he could be developing Aplastic Anemia. We are still waiting for test results on Avery's bone marrow that we sent to Johns Hopkins. However, regardless of diagnosis, as Avery's hematologist said today, it is time to do something else. Our doctor had thought about trying IV IG therapy to treat platelets, which in some cases can extend the life of a platelet cell, but since it seems Avery isn't making any platelets, it isn't likely that it would have any effect on him. So, we discussed a couple of options today.

The first possibility is immuno-suppression therapy. Basically, Avery would receive chemo-like medication that would weaken his immune system and high doses of steroids in hopes that his bone marrow would somehow reset itself and start producing cells normally. Our doctor said that it works about 50% of the time, but in most cases, it isn't a long-term solution and that symptoms return. It also carries high risks of infection, due to suppressing the immune system, and reactions to the different medications he would be given. Also, his blood counts would drop before any improvement might be seen.

The second possibility is a bone marrow transplant. A BMT requires longer stays in the hospital and/or daily visits to the hospital for treatments (6 weeks to 6 months, depending on complications) and a compatible donor must be found. The best results come from sibling matches, so Tuesday, Phillip, Bryson, and I are going to have the blood work drawn for the HLA matching. If by chance one of us, most likely Bryson, would be a complete match, then we would need to decide whether to even do the immuno-suppression therapy. It might be better to just move to the BMT option. If none of us match, we will need to wait until Miss Emerson Rose appears in July. We are making arrangements to have her cord blood collected and tested for a match. If she isn't a match, extended family and the donor registry would be accessed. However, our doctor thinks we need to do something fairly quickly. So, if Bryson isn't a match, we may have to go ahead with the immuno-suppression therapy to buy us some time until a match can be found. Of course, there are many risks with BMT as well, but it also offers the best results if successful.

The HLA results will take a couple of weeks to come back. We are scheduled to meet with Dr. Harris, the Senior Bone Marow Failure Specialist from Cincinnati Children's Hospital. Dayton does not do transplants, so if it comes to that, we will most likely be going to Cincy. We have met Dr. Harris before, and he is very knowledgeable in issues of bone marrow and transplanting. We are hoping that he will be able to give us some advice on what to do or offer us more information.

I know that many of you have kept our family, specifically Avery, in your prayers. But I'm now asking that you pray that we will make the best decision for our son. We're down to very few options, all with risks, and we want to do what is in Avery's best interest. I also would appreciate if you would pray specifically that Bryson would be a match, and if not, that Emerson will be. They are the most likely compatible donors. We sincerely appreciate your concern and prayers for our family.

Bethany

Enough Mercy for Me

Lamentations 3:22-23 (King James Version)

22It is of the LORD's mercies that we are not consumed, because his compassions fail not.

23They are new every morning: great is thy faithfulness.

Aren't you glad for God's mercy and compassion? I'll be honest, most days I feel like I must exhaust my allotted supply of mercy for the day with all of my failures, faults, worries, questions, and prayers. I'm a pretty high maintenance child of God. But I've been reminded lately and have found it encouraging to remember that God's mercies are brand new every morning. So when I roll out of the bed (and these days, I am rolling!) and my feet touch the floor, regardless of how much of God's mercy and compassion I consumed the day before, there's a fresh supply waiting for whatever the day brings.

This week has been another particularly stressful week, and I'll spare you the details because I don't want to complain. But I have to admit, I've been relying heavily on the grace of God to keep me sane. A wise friend of mine has reminded me that the best way to cope is to take it one day at a time. And if I take it one day at a time and rely completely on the mercy of God, then I should be able to make it!

One of the songs I have on my blog play list is "Forever God is faithful; Forever God is strong; Forever God is with us; Forever, and ever..."

What a comforting thought! God's mercies are new every morning and His grace is sufficient. Thank you, Jesus.

May God bless!
Bethany

The Story of David, According to Bryson

Yesterday, I posted a video of Avery. Bryson saw it and decided he wanted to be the star on today's blog. So, here he is my little orange-haired boy sharing one of his favorite Bible stories. Bryson has a very vivid imagination and loves a good story. If I could just figure out how to channel all of his energy and curiosity into a positive direction then it's hard to say what he could accomplish. He doesn't have all of his facts just right, but he tries!



Enjoy,
Bethany

Hello, from Avery

This is the day that the Lord hath made; Let us rejoice and be glad in it. Psalm 118:24

While I try to rejoice in every day that the Lord grants me, it's so much easier when it's sunny outside, my husband is home, and my kids are both healthy and happy!
Here's Avery waving hi, which is his latest skill that he is getting better at every day. I think he also tries to make the "h" sound for hi sometimes...at least that's what I like to think! And yes, I do dress my kids. It seems like in most of the pictures I take, they're either in their pajamas or half dressed for some reason.




Please say a prayer for him that his port surgery will go well next week!

Thank you! Hope you're all having a chance to enjoy this beautiful day!
Bethany

March, So Far

They say when March comes in like a lion, it goes out like a lamb. I'm hoping that's true because ours certainly came in like a lion in more than one way!

If you've been anywhere near Ohio, then you know that since March 1, we've had a series of cloudy, cool, rainy days. Add the melted snow from February to the inches of rain we've gotten lately and we've got some serious mud. I think Bryson may be one of the few folks who enjoys that. On the rare afternoon where the temps have climbed above 40 and there has been a lull in the rain, he puts on his mud boots, I roll his pants up a little, and off he goes into our swampy back yard. He plays in the fill dirt Phillip put at the side of our house for spring landscaping and the mud hole where there once was a rotting deck on the back of our house. Then when he knocks on the front door, I pull off his boots and strip off his pants on the porch before allowing him to enter. There he is with little mud splatters all over his red cheeks, as happy as a four-year-old boy can possibly be. I guess that's one of the wonderful things about childhood. Kids can find pleasure in the things in life that grown-ups sometimes find annoying.

March 2, Avery was scheduled for his bone marrow aspiration and biopsy. That morning, Avery woke up with a low grade fever. At the hospital, the hematologist and anesthesiologist debated on continuing with the procedure, but decided to go ahead with it. They took aspirates from both sides of his hips and then a solid bone sample to send to pathology as well. We brought him home, and he was pretty grouchy and tired the rest of the evening and all of Thursday. On Friday morning, I had my 20 week ultrasound scheduled, so Phillip and I dropped the boys off at Sarah's house. Shortly after arriving at the doctor's office, Sarah called and said Avery was running a fever and had a seizure. On our way home, she phoned again to say he had another seizure. I called our pediatrician who said to take him to the ER, so I dropped Phillip and Bryson off at home and took him to the hospital. A chest x-ray showed pneumonia, so he was admitted. His blood counts were also pretty low, so on Saturday he got a blood transfusion. The iv antibiotics and fluids seemed to help a lot. We came home last night, but he's still coughing pretty hard and really fussy. We're going tomorrow to meet with the hematologist and go over some of the results of his bone marrow aspiration and biopsy. We did get some preliminary ones, but I think I'll wait until we have more details before I share.


Oh, just in case you haven't heard yet, we found out at our ultrasound that we're having a baby girl, Emerson Rose! I'm still in shock. Unfortunately, I haven't had a chance to buy anything pink yet. I'm going to try to do that sometime this week. I don't know what in the world we're going to do with a little girl, but I'm SO excited!

So, that's how my March has been so far.

Hoping that the rest of the month resembles a lamb...
Bethany