Wednesday, October 29, 2008

All of the confusing information follows

Okay, I will attempt to explain why I am no longer eligible to donate bone marrow (for the time being), to the best of my non-doctor, non-nurse ability. There is a family history of aplastic anemia. My uncle and brother had it. Apparently this illness can result after a virus or from taking a drug, but in our family it was unexplained. When the doctors at NIH began probing my family medical history they were concerned and curious about this illness and flagged it in my file. Then they were further interested to learn that my younger brother had been treated at NIH about 18 years ago. They asked if they could contact the doctor who did research on him, Dr. Young, and get some information. I said yes and so they did. Dr. Young was very excited to hear that they had contacted me because they had discovered a genetic mutation in 2007 that he felt was responsible for my brother, Chad's, illnesses and death.

SO, my mom and I went back to Bethesda, MD last week to give blood samples for genetic testing. Mom had some of Chad's hair and they asked for that too. We met with Dr. Young and the doctor who discovered this mutation and they are very positive that they will find the mutation in Chad's DNA. They are also pretty sure that we won't have it. They told me that a family history of unexplained aplastic anemia should have precluded me from donation and that I should have been removed from the donor list. So they are going to map the gene in our DNA. This is a long process and they have to do it twice just to be sure that they have the correct result. So if I'm negative and Chad's hair is positive, they'll reinstate my donor status on the registry (too late for the 54 year old AKL patient), but if we're both negative, then I have to stay off the registry until they figure out where the aplastic anemia came from.

It's all very confusing but at the same time I feel hopeful that our 40 year old family medical mystery might just be solved before the end of 2008. This mutation is responsible for liver and lung disease, all problems which our family members have had. It would have been horrible to have donated marrow and to have had the transplant fail because of a genetic mutation (which is what would have happened if I turn out positive). So at this point we're waiting to hear back from NIH with results. Dr. Young is pretty sure that I'm negative because I've made it to the age of 32 with no symptoms and my health is practically perfect. All of the family members who have died starting exhibiting symptoms in their teens or early 20's. So chances of my other brother and I having this mutation seem to be slim. Really only time will tell.

Again I'm quite amazed to see God's hand in this. There was a reason my mom kept Chad's hair. There was a reason I went to NIH and not Georgetown Hospital for my physical exam. There was a reason I got pulled off the registry as a potential donor. My initial hope for helping this woman may be a thing of the past, but perhaps something in our medical history will help other family members and people who have this mutation.

Tuesday, October 28, 2008

Fall crafts and pumpkins

Fall is here and we've been very busy. We carved the pumpkins that we picked in Richmond with Nonna. They turned out super cute. The kids used these big "Mr. Potato Head" type pieces to decorate their pumpkins. Our porch is filled with carved and painted pumpkins and gourds! It is so cute. The wreath with pumpkins and ghosts was made from fist and footprints. The kids had an absolute blast with that craft. The messier a craft the better, as far as they are concerned. It is a very blustery day today with high temperatures only expected in the mid 40's! It is really windy too and finally feels like fall. We bundled up the kids this morning as they headed to preschool. I have a feeling they won't be playing outdoors today. They might blow away!

My trip to NIH was interesting and full of hope. I'll post more about that later. I just wanted to post some of the fun things that have filled our October.

Tuesday, October 21, 2008

Another wrinkle in the works

Things don't always happen the way we planned, and I sometimes think nothing in my life ever happens smoothly. There just always seems to be some wrinkle in the works, some thing, big or little, that shows up and makes things more difficult.

I got a call from NIH today, from the director of the marrow donor program with some news. Since my brother died they have discovered a genetic mutation, a protein, that is associated with bone marrow transplant failure. This may have been the reason my brother's transplant did not work. If I have this mutation, I cannot donate marrow because the recipient would die. I might be a carrier who never develops the disease, but if I have this protein I can't give marrow. SO I am now driving up to NIH on Friday with my mom and the kids for some genetic testing. I should know within a week if I am still eligible to donate. It's frustrating to think that they didn't have this information in time for my brother. If we had known that a transplant would have failed, he would never have had it. And then how much longer would we have had him? I miss him a lot, but more so in this month when all the memories seem to be sharper.

This is really difficult for me. I was hoping to be able to donate, not to be heroic or noble, but because I feel it would somehow redeem the month of October for me and my family. But my mom reminded me that God is still in this because even if I can't donate, we'll have discovered something that could help my children, my brother, others in our family. We have lost so many family members to illness and have never had a name for it. There have been some genetic things discovered, but there were still so many unknowns. Maybe this is finally it. It's just another long trip to Maryland when I was hoping that my next long trip would be the donation process.

Friday, October 17, 2008

NIH Appointment

I left early yesterday morning for my appointment at the National Institutes of Health (NIH). It was a fairly uneventful trip, although as usual traffic was an issue. I left at 8:15am and made it to Bethesda just in time for my 11am appointment. I was registered as an outpatient and they did an EKG, chest X-rays, and I spoke with two doctors. They want to make sure that I am healthy enough to be put under anesthesia. The first doctor took a medical history and talked a little about the bone marrow harvest. The other doctor is one of the world's experts on hereditary hemochromatosis and was very interested in my family. She is also the head doctor in the National Marrow Donor Program and wanted to meet me and make sure I didn't have any questions. The final thing I did was donate a unit of blood that will be given to me post surgery and they also took about 5 tubes of blood to test for various illnesses.

It was quite a busy day and I was wiped out at the end of it. I stopped in Fairfax to have dinner with my in-laws before I headed home. I needed a few minutes of not dealing with traffic on 495. Seriously how to people live in the Northern Virginia area? I would be in trouble for road rage! The kids were still awake when I got back to Harrisonburg at almost 9pm. It was so good to get to spend some time with them before they went to bed.

I am still excited about the prospect of donating marrow. I will find out early to mid next week if the harvest will go ahead on the 30th. They have to make sure I'm healthy and that the recipient is ready.

Yesterday was the four year anniversary of my dad's passing and I was missing him so bad last night. I think he would be so proud of my donation and would have been so excited to see my kids growing up. I hate that he's not around to see them. I don't pretend to understand God's will or why things happen. I just try to put my faith in Him and hope that maybe someday it will all be clear. In the meantime, I am trying to show His love for others and am trying to just learn as much as I can about God and about what He wants for my life.

It is 10am and the kids are still in their jammies. I have got to go get them dressed and brush their teeth.

Monday, October 13, 2008

Now for something fun....tag, I guess I'm it!

Kate Kelty of The Kelty's tagged me and I'm so new at this and I'm not sure I have 7 bloggy friends that would appreciate being tagged, but here goes anyway.

1. I was part of a quartet of singers in (I think) middle school that performed in an Assemblies of God American Idol-esque talent show that was called Teen Talent. We traveled to several churches performing a Sandi Patti song called "Pour on the Power." I didn't even remember that I had done this until recently...hmmm selective memory maybe?

2. I met Tom Brokaw when I was a senior in high school. I wanted desperately to make a name for myself in television journalism and got a press pass to attend the 1992 Presidential debates that were taking place at the University of Richmond. I went to the press room and watched reporters and anchors writing and taping and filing stories. I was this starry eyed kid who had HUGE dreams and so I wanted to meet Tom Brokaw. I did meet him and well, let's just say he wasn't very nice to me. That was probably the beginning of the end of my big TV dream.

3. I LOVE baking but would much rather eat the raw dough than the finished product. I would bake something every day if I could, but I'm afraid that everyone in my house would be crazy overweight from eating all the goodies. I love making coffee cake and cinnamon rolls and pie.....oh man, I'm going to go eat a piece of apple pie as soon as I publish this post! Oh, I made my very first pie crust from scratch this summer and now I feel compelled to do it and to find the best recipe I can. I made 2 apple pies this weekend with 2 different pie crust recipes.

4. I LOVE LOVE LOVE the Redskins, even though so many of my sports loving friends hate them and make fun of me for it. I hope our kids will be major dyed in the wool fans and will wear their love with pride. We are very strict about their tv watching, except for Sunday football. We've been teaching them to say, "Redskins Rule! Cowboys Drool!" We're also teaching them the Redskins fight song and I look forward to taking them to FedEx field for a game in the future.

5. I am a major wannabe cowgirl. I worked for a few summers at a Christian summer camp, but I was a wrangler in the barn, taking out trail rides, teaching kids about barn animals, etc. I learned how to rope and would rope fence rails, haybales, and even campers....shhh that was a big no no! I wish I had a way to ride every day. It really is a passion that one day I hope to get back into.

***I'm trying to keep these fun and random in light of my last two posts :)

6. I love this time of year, the fall, and can't wait for the leaves to turn in my backyard. I love taking pictures of my kids in the leaves and I love having Mark rake them up so we can jump in them and crunch them. I love eating apple pies and decorating with pumpkins and gourds. I look forward to fall all summer!

7. I never imagined that I would be staying home with my kids. I really imagined that I would be living in New York working for a big network doing news. I now can't imagine my life without Peyton and Liam and living in the little 'burg. I LOVE being part of a small-ish community. I love playing flute in the local concert band. I love knowing other people and connecting with them in random places. I feel extremely blessed to have had my life turn out to be nothing like I planned/ expected.

Okay, now you're it (but only if you want to be)
Miss Booshay
The Faircloths
Chocolate Chic

The next step....

I talked to my donor coordinator this afternoon and I'm heading to the National Institute of Health on Thursday morning for a physical exam. I'll have to give a unit of my own blood that will be given to me after the bone marrow donation, plus they'll do an EKG, X-rays, etc. to make sure I'm in good enough physical health to donate. If all goes according to plan, the patient will begin her treatment next week to prepare her for my marrow and I'll donate at Georgetown Hospital on October 30th. That is the timeline so far. I don't feel any fear or anxiety about this at all. I feel God's hand and presence in it, so I'm not worried or scared at all. We told Peyton yesterday that we weren't sure where we would be for Halloween because I'm having a surgical procedure and she immediately started crying and said she was scared. We told her that it was like when we donated our hair, that we gave it to someone who had cancer and that it was growing back. We told her that I was going to donate something from my bones that would grow back. She doesn't understand at all and I think she is just scared to hear that her mama will be in the hospital, but hopefully she'll be surrounded by all her grandparents while I'm at Georgetown and they'll give her the love she needs to get through it.

I just keep praying for the recipient, that God will give her comfort. She has a very aggressive cancer and is in remission now. Her doctors are concerned that she'll go out of remission fast, so they are moving very quickly and trying to get the transplant done by the end of the month. If she has a relapse, they are concerned that she won't be able to get back into remission. A bone marrow recipient has to be in remission for a transplant to work. Hearing all of this today justs spurs me on to get it done and to be there for her. I may never have the opportunity to meet her, but if I can give her a day or a year or many years of life, it's all worth it! Aren't we as Christians supposed to be serving one another in love? What better way to serve someone than to donate a piece of myself. What a gift! I just feel very privileged to be a match and I hope that others will be inspired to join the registry or to donate blood or to become an organ donor.

One of my friends at church yesterday said that maybe God would use this to redeem October for our family. We lost my brother and my dad in the same week in October, one in 1995 and one in 2004. The fall is a difficult time for our family, filled with sad memories and regrets. I have hope that it will be a sad month, but that it will also be a time we'll look back on with great hope.

Thursday, October 9, 2008

13 years

It has been 13 years today that my brother died. I can't believe 13 years have passed so quickly. A lot of my memories from that time are hazy, but others are very clear. It has also been 13 years since Mark suggested we go to a bone marrow drive and add our names to the national registry. Since no one in my family was a match for my brother, Chad, his doctors had to go to the National Bone Marrow Registry to find a donor. Some anonymous and very generous person donated marrow for him. Unfortunately his transplant was not successful, but I always hoped that I would get a chance someday to donate.

Well, 13 years to the day that my brother died, I got a confirmatory phone call from the National Bone Marrow Registry that I will be donating bone marrow for a 54 year old woman with AML, a form of leukemia. I cannot express how intensely privileged I feel to be a match for this woman. I received an email several weeks ago letting me know that I was a potential donor. I contacted the donation center quickly and went to Maryland to donate more blood for testing. At that time I was a 5 out of 6 match and they told me they were testing between 2 and 10 other potential donors. Last week while we were at the National Zoo, I received a call letting me know that it was down to me and one other potential donor and that they would call me this week, on Monday or Tuesday.

I hadn't heard anything and was going to email my contact at the National Institutes of Health today, but then I got a call late this afternoon. October is such a difficult month for our family. We lost both my brother and my dad in this month, so to get a call asking me to donate marrow to possibly save this woman's life is humbling and a blessing and it makes the month a lot more hopeful. The next step is scheduling a physical exam, probably sometime next week. I'll have to drive to Maryland for this. Then if my health is good enough, I'll be having the surgery sometime at the end of the month, possibly October 30th. I will have to stay overnight at the hospital, but shouldn't have any difficulties besides being a little sore.

I think it is truly amazing how God works. I never dreamed that I would have this opportunity and I feel really blessed by it. My prayer is for this woman and her family to have peace during this process and that the transplant will be successful.
Joining the registry is really easy these days. I encourage you to go visit the site. They need donors, especially minorities.

Wednesday, October 8, 2008

Such a slacker

Peyton in the entrance to the straw tunnel

Here it is October and I haven't posted a thing yet. We had a very nice visit with Mark's parents in Fairfax last week. My mom came up last Friday and we took the kids to the National Zoo which they loved. We have just been so busy lately. This weekend will be the first weekend we will be home, not traveling, since August! I'm excited about doing nothing. There is a big kid's event that we talked about going to, but we're not. We will probably head to the Farmer's Market to get some local apples for a pie, but that's it. I'm not cleaning or planning anything but lots of lounging around and hanging out as a family. I think we all need a break. I love going to visit family and doing all kinds of activities, but it's exhausting too. Mark is traveling again this week and so I'm sure he will want a break.

The weather is really chilly today and I am loving the fact that I'm wearing long sleeves and sleeping under my heavy quilt at night. The leaves are really just starting to change and there is a gorgeous orange tree at the top of our street. I went with Peyton's preschool class to the pumpkin patch yesterday and we had a great time. We each got a small pumpkin to bring home and they are too cute sitting on our porch. Peyton slipped and fell and hit her head yesterday and had a pretty big lump on it and a big scrape. We got ice on it quickly and she felt better by late afternoon. Fortunately she fell at the end of the field trip so she didn't miss out on anything fun. We are looking forward to another trip to the pumpkin patch next weekend in Ashland with Nonna. Then we'll probably go again the morning of the family bonfire. Lucky kids!