The next step along this journey

Ever since I first heard about having another baby with the same HLA as James Thomas so he could receive a bone marrow transplant, HOPE filled my heart. While a bone marrow transplant is the last thing I want for James Thomas the possibility of it can only happen if he has a sibling who is a perfect match to be his donor. As you all know James Thomas is our only child so we have to use modern medicine to guarantee this for him. I originally said that I wasn't going to share this part of our journey on our blog due to the uncertainty of everyone's reactions. But after reading "Saving Henry" and "The Match" I believe being open is the best way to go for James and me. There is no way I will be able to explain everything or do a good job at it but I will try to do my best to share our story with you. My hope is that in the rare chance you find yourself in the same situation or meet someone who has to go down this path then maybe I can be there for them. I am so thankful for the people who have traveled this road before me and are open about it. It makes the process bearable.

So how do we ensure that we have an exact HLA match for James Thomas? Along with MANY prayers we will use IVF with PGD. James and I first heard about having another baby back in October when we first learned that James Thomas had Diamond Blackfan Anemia. A family friend of James' is a doctor in Washington DC and she suggested that we try to get pregnant right away. Then in November, I traveled to New York to meet with the experts in DBA and they told us about IVF with PGD. Basically, you go through the same IVF process that family's who have trouble conceiving go through. When the embryos reach day three of development a cell is removed from each and sent to Genesis Institute in Detroit where they will test them. Then they will implant the embryo or embryos that match James Thomas' HLA. The reason we have chosen not to try naturally is because there is only a 25% chance of a sibling being a perfect HLA match. They will also check each embryo for the genetic mutation that James Thomas has. Based on James and my genetic testing they don't anticipate any of the embryos having the DBA mutation but we are at a higher risk of this happening since we have already had one baby with this mutation. My initial fear was what do we do with the other embryos? It would be devastating to destroy the embryos that have the RSP 19 mutation. What if we have a lot of embryos, do we freeze them all and implant them later? Can James and I really have 6 or 7 children or on the other side could we destroy the embryos that are not HLA matches? This is the side of PGD that is very difficult. This is where I pray that you never have to even think about these kinds of things. But, from all the research I have done we would be blessed to have that many embryos because families try over and over again and some are never able to conceive a child and the ones that do feel blessed beyond words when it finally happens. One mom told me I would be lucky to have extra embryos because she never did. In fact it took her over a year of attempting to finally have her daughter (which she gave birth to a few months ago!!!). So, I do not worry anymore about that problem. I trust that God will be all over this and what happens will happen. I just pray that it won't take James and I several attempts to get our precious baby.

We have found our fertility doctor who is going to walk us through all of this. I was nervous about him at first, mainly because I have never had a man doctor and I wasn't sure he would be as overly compassionate and cheerleader type which I know I need. But after two consults and being assigned a nurse I know he is where we need to be. We are using Dr. Hughes with Genesis Institute to conduct the PGD. There are only two places in the US that do this and he was the pioneer behind PGD. Tomorrow we will be receiving our DNA swabs. All three of us, plus our parents have to send in swabs with our DNA to Genesis, then they will use them to make a probe to test the embryos. The probe must recognize James Thomas' HLA in all the embryos. Once the probe is made, then we will be able to begin the IVF process. Dr. H wants to do blood work and some other prepping tests while the prob is being made. Hopefully, we will be able to begin those this week. It is a lot to process and learn but we are so thankful that medicine is able to help us grow our family and at the same time do everything possible to ensure that James Thomas lives a long, healthy life. The author of Saving Henry was asked what she says to people when they ask her, "How could you do all of this?" She said when she looked Henry she sad to herself, "How could you not?" That is our philosphy here: How could we not do everything we can to cure James Thomas no matter what the financial or physical pain it causes us.

We ask for your prayers through out all of this. As much as I do believe in medicine I know that God is in control. He has a PLAN for our family and we want Him to be all over this entire process. I always try to find a song that really hits home with what we are going through. So, this is my song for IVF with PGD. Hold Us Together by Matt Maher I will try to figure out hot to attach a link to hear the song. Hope this worked.

http://www.youtube.com/watch?v=-he2DohfwWE

Picture Time

We have had the best two weeks with no doctors appointments! We have been to the zoo twice, have had some work done on our house, had lots of play time, and a wonderful Easter! On Easter Sunday James Thomas turned 10 months old. I don't know where the time has gone. These past ten months have been the best ten months of my life. I can't believe I am already starting to plan his birthday! We have decided to celebrate in Galveston and James and I rented a house right on the beach. We are really excited!!

James Thomas is on the go and super mobile. I think any week he will be trying to take his first steps. He is eating real food, clapping his hands, and taking in the world. It is really fun around our house right now.

Next week we are back to the doctors as we have three appointments scheduled starting with a transfusion on Monday. Beware, I am about to post lots of pics!!! Hope everyone is enjoying Spring and the perfect weather!


First trip to the zoo
Fun in the laundry basket

My Easter basket.
What did the Easter bunny bring?
SLINKY!!!!!
The Easter basket Mrs. Ashley gave me


He has Risen!!!
Time to cover those plugs!
Our pretty flowers have bloomed!

Great weekend

We have been super busy around here. On Monday I took James Thomas to the zoo for the first time. It was actually my first time to the Houston zoo as well. We had a wonderful time with the Jones' and Chambers kids. I bought the zoo pass and can't wait to go back this Wednesday. Last Wednesday James Thomas got his 12th blood transfusion. He is really on the go now so this was my first time to chase him around the room with his pole. He has no idea that he is connected to the IV in his chest and my biggest fear is that he will take off and the needle will be pulled from his port. That would be a nightmare so I must keep my eye on the little guy every second. Luckily he took a good hour nap in his stroller which gave me a little break. Transfusion days are so long. I think Texas Children's does it a little differently than other hospitals because we go in for labs, wait for the blood, and get the transfusion all in one day. This last time we got there at 9:30 and left around 5:00 which is one LONG, LONG, day. He is feeling great now and has LOTS of color. I love it!
James and I are having a lot of work done on our house so Thursday morning the contractor and painters showed up bright and early. We are living out of two bedrooms and have spent a few nights at the Jones' house as well. It looks awesome over here (amazing what fresh paint can do) but I am ready for them to finish so I can put my house back together.
We had a great weekend cheering on the Baylor Bears in the Sweet 16 and Elite 8 with friends. The Heersinks drove into town to watch the games and it was nice to get to spend some quality time with them. We had so much fun going to the games on Friday and Sunday. James and I love Baylor so much! We have such awesome memories from our college days and formed the best relationships while there. I think choosing Baylor for college may be the best decision I ever made. That one decision paved the way to the wonderful husband, baby, and friends I now have. It would have been fabulous if Baylor could of made it to the Final 4 but we are still proud. Tonight the girls got into the Final 4 in San Antonio so James and I may have to find a way to get down there for those games. GO LADY BEARS GO!
This week is very uneventful medically which is a blessing! We are waiting for some genetic test results from the doctors in New York. They drew all our blood back in November so we really hope we hear back soon. This would be our prayer request now. We are at a stand still until we here back from them. We always pray that James Thomas will start making red blood cells on his own and complete healing!

Spring Break

I just wanted to update to let you know where we are after our adventure Sunday and Monday. James Thomas is doing GREAT! They still think he had an asthma attack but won't diagnose him as asthmatic with just one attack. We are praying that was a one time incident but we now have an inhaler for him in case it happens again. We went to the pediatrician on Wednesday and got the all clear! They have moved his next transfusion up a week so once again he is only going two weeks between transfusions. I really really wish he could go longer, maybe next time.

My mom took James Thomas to Johnson City for a few days. My dad was dieing to see him and I needed to get some work done around the house. James and I are having the house painted so I need to pack up all our stuff and put it away. This would be impossible with a little guy crawling around and pulling up on everything so I am glad my mom offered to take him for a little bit. I think I may take a break and go get a massage!!!! This is the first time I have been in our house without him. It is really strange and quiet around here. I already miss him so much and I can't wait to go get him tomorrow!!!

I am feeling really rested and rejuvenated! We are doing great and loving this beautiful weather here in Houston. I wish it could stay like this year round. I hope you are all enjoying your spring break and getting ready for a great weekend!
Lots of love!

Not quite what I expected

Thank goodness it is morning because last night did not go as I thought it would. First of all we were not placed on the 9th floor but in the Abercrombie building at TCH. The Abercrombie building is the old buildng and the rooms are not the same. It is hard to know more about your child's illness than the doctors or nurses. I feel like I am the one making sure he is doing o.k. For example, late last night is hemaglobin was at 9.9 and first thing this morning it had dropped to 9.2. They thought he was great but at this rate tomorrow he would be 8.5 and Wendesday he would need blood again! When I explained this to the doctor she says, "Maybe I should call somebody in that department and ask them what they think?" I don't understand why they didn't put us on the hematology/oncology floor but I have to let that go. I am not the one in charge. James Thomas did not sleep last night. He cried and cried until about 2:45 and then they came in every 30 min. to do who knows what, which woke him up every time. Then at 6:50 the lab tech came in to draw blood and he has been up ever since! I think tired is an understatement.

I know this post sounds negative and I am trying to stay positive and be thankful for all the good things (not being on oxygen anymore, JT's eating is GREAT, and the fact that he is alive) but lately I feel this poor kid just can't get ahead. We are doing well and James just brought us breakfast. My mom is on her way into town. We are going to be discharged sometime today (the nurse warned it may be awhile) and my mom is going to let me get some sleep. I am sure she will enjoy her one on one time with James Thomas as well.

That is where we are today. Thank you for all the support and prayers.

Back at TCH

I can't believe I am actually writing these words but we are being admitted tonight! James Thomas starting having a mild cough on Thursday and by today he was wheezing terribly. After much debate, James and I decided to bring him to the ER and thank goodness we did. When we first got here they told us his wheezing was an 8-9 on a 10 point scale. They even warned us that he might have to go to the NICU. The immediately put him on breathing treatments and gave him some steroids. He responded beautifully so they told us they would watch him for 3 hours and if he remained stable we could go home. This was wonderful news!! Well, his oxygen levels starting dropping so they had to put him on oxygen. When they tried to take him off it later in the evening his levels dropped again. That is when they decided to keep us over night to watch the little guy. My heart just aches for him. He can't seem to get a break. The last doctor that came in is afraid he may have asthma. They told us that they will have to wait and see as he gets a little bit older. We are waiting for our room back on the 9th floor. I will say it is nice to know where we are headed and we will know some of the nurses. There is a comfort about familiarity. Please pray he does well tonight and we get to go home in the morning!

We are doing well. James is going to get us settled in our room and then head to the house.

sick sick sick

Please say a little prayer for James Thomas. He can't seem to get over this stomach bug. His stomach has been upset since Tuesday and it just makes me so nervous because we really don't want him to get dehydrated. He is also low on blood. We go on Wednesday to meet with Dr. B and to get a transfusion but when you are severely anemic, Wednesday seems like a world away. He is pale, cranky, doesn't eat well, and can't get a good rest. I worry a lot about his counts.

We are wrapping up a great weekend. James turned 29 on Saturday! Happy Birthday James. We got to go out with some friends last night and we celebrated with Nancy and Jim as well. I am so thankful for James and LOVE LOVE LOVE him so much!

Last weekend James Thomas got his first bible at church. It was a very special moment and we were excited to have some family in town to participate . Below are some pictures from that great day!