Diamond Blackfan Anemia (DBA) is a rare blood disorder. In DBA, the bone marrow does not make enough red blood cells that carry oxygen throughout the body. DBA is usually diagnosed during the first year of life. There are about 25-35 new cases of DBA per year in the United States and Canada. DBA affects both boys and girls equally and it occurs in every ethnic group. The anemia was named for the first two doctors who documented cases of the disease.
I know people have asked how we ended up in the hospital or even knew something was wrong. We went to our regular four month check up with the pediatrician. At the very end of the appt. he looked under James Thomas' eyes and thought he was really pale. He told us he wanted to draw blood to check for anemia. We didn't think anything about it and thought worst case meant James Thomas taking iron supplements. Oh how we were wrong. Dr. Pielop called us and told us his hemoglobin was at 3.2 and we needed to go to Texas Children's Hospital. When we got to Texas Children's it had dropped to 3.0. The normal range 9.5-13.5. We are so thankful for Dr. Pielop because we have learned many cases are never diagnosed. Since red blood cells carry oxygen through out the body we believe some of the SIDS cases are actually a blood disorder never diagnosed. James Thomas' levels would have dropped and oxygen wouldn't have gotten to his brain and heart and he would have died one day in his sleep. Our next appointment with the pediatrician isn't until December and he may not of made it that long. It reminds us that we need good pediatricians. If you aren't happy with yours call me and I can fill your ear about how awesome Blue Fish Pediatrics is. Luke uses another pediatrician in this practice and he has been a true blessing for the Jones'. We LOVE BLUE FISH!
To treat patients with DBA there are two common options: corticosteroids and blood transfusions. Corticosteroids is one of the most successful treatments for patients with DBA. There are major side effects that come with using these drugs for a long time. I don't want to list all of them but please continue to pray about this aspect of his condition. Our doctor on Tuesday told us we would start this treatment after his six month immunizations but today James was on the phone with the Clinical Research Coordinator from DBA Registry and they don't start steroids until one year. This disease is so rare and there are no set guidelines for treatment, SCARY. We want to do the very best thing for James Thomas and are realizing we will have to do LOTS of research to make sure he is getting the best care ourselves. So, if he doesn't respond to the corticosteroid treatment he will do blood transfusions every 3-5 weeks. This would lead to a whole new set of side effects and he would only be able to do the transfusions until we get him a sibling match to do a bone marrow transplant. Yes, I know you are thinking, "Wait, you don't have any other kids." This is something else we are learning and working on. We meet with a Geneticist in early December. There is a Leucine trial but we don't qualify for it. You have to be two years old and transfusion dependent. We will pray for success here and maybe in a year and a half James Thomas may be a candidate.
I know this is a lot of information but I thought it would be good to let people know what is going on and what is to come. We are going to upload a link to the website soon.
SO, what else has been going on???? Yesterday, we went to the pumpkin patch with some of our friends. We had so much fun getting the kids together and taking some pictures. Julie had everyone over for a wonderful lunch and play session. I am so blessed to live close to great friends that I have known for so long. Most of them went to Baylor! We all live in a one mile radius of each other and it is so much fun!!
One of our dear friends from church, Mrs. Ashley Grimmer, ordered some wonderful prayer bracelets for James Thomas and Luke. They say, "Praying for the Besties!" When Melissa and I were pregnant we would talk about how the boys would be best friends whether they liked it or not. So, sweet Ashley had the bracelets made. I will set up a way to let me know if you want one soon. Then we can start mailing them out. Every time I look down at mine I say a quick prayer of healing for James Thomas and Luke. This is a wonderful reminder! Thank you Ashley!
We have a fun filled weekend ahead of us. Tomorrow is my birthday so James Thomas and I are going to start the day at our Mommy and Me music class at church. We have missed it the past few weeks so I can't wait to spend that hour of quality time with him. Then, the three of us are going to do some shopping and we are ending the evening with dinner out. I am super excited!! Saturday we have three great parties to go to. There will be lots of pictures of Mr. James Thomas Garrett in his pumpkin costume. (we wanted to switch his costume to that of a vampire ha ha but I couldn't find one) His dad has a great costume too so just wait for those pics.
We are doing well. Thank you again for all the love and support. The kind letters, emails, texts, calls, books, gifts, and meals have been so wonderful. God has really showed us his compassion and love through all of you. THANK YOU THANK YOU! James starts his job Monday so I am really NERVOUS about that. I have cherished and loved every minute he has been home since taking the BAR exam. I am so happy for him but will greatly miss my soul mate during the day. I love him so much!!!!
This post is too long. Happy Halloween and thanks for sharing this journey with us.
I was just reading in my new book, Jesus Calling. This is what it said for today, October 29th.
"Linger in my presence for awhile. Rein in your impulses to plunge into the day's activities. Beginning your day alone with Me is essential preparation for success. Your time of being still in My Presence equips you for the day ahead of you. Only I know what will happen to you this day. I have arranged the events you will encounter as you go along your way. If you are not adequately equipped for the journey, you will grow weary and lose heart. Relax with Me while I ready you for action."
Hebrews 12:1-3 "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart." It is all about perspective! Love to you!
