Thursday, February 24, 2011

Heart, Lung, Colon

Today I heard back from Jacob's cardiologist with the results from his EKG and echocardiogram that he had on Monday. Apparently, Jacob has a hole in the top hinges of his heart. We are going in for a followup with the cardiologist as soon as they get it scheduled.

Also, Jacob's lung biopsy and colonoscopy/biopsy are going to be Monday. I'm glad they were able to coordinate the two procedures so that he will only have to go under anesthesia once.

Meanwhile, we are pretty much settled in with Josh's wonderful parents. They have already been so supportive and helpful and we feel so grateful to them and everyone else for helping us through this.

Meanwhile, we are trying to find Ethan a good prekindergarten class in the area, so if you have any recommendations, please send them our way! Thanks!

Friday, February 18, 2011

Update on Jacob's Health

Sorry for the long gap in between posts on this blog. At the beginning of September, I went back to school to start earning a Ph.D., and lots of other things have been going on in our lives including selling our house in Redlands and preparing to move (which we're doing tomorrow). With everything that's been happening, Kylene and I have simply not had any time to update our family blog.

During the past couple months, we've continued to have follow-up visits with doctors regarding Jacob's chronic granulomatous disease, which we have mentioned previously on this blog. The doctors recommended that we consider having Jacob undergo a bone marrow transplant, which is presently the only way to cure CGD. After our initial visit with the bone marrow transplant doctors, it sounded to us like the treatment would potentially be worse than the disease; there are a lot of potentially major side effects to undergoing chemotherapy and bone marrow transplantation. Later we met with the CGD specialist doctor again, and he strongly advised us to reconsider. He explained that out of the 20+ CGD patients he's worked with, only one child survived to adulthood, and the doctor lost contact with the individual after he reached the age of 26. Normally CGD patients do not live beyond their teenage years if they try to rely solely on prophylactic medications like the ones that Jacob has been taking since his diagnosis, because prophylaxis simply cannot substitute for a healthy immune system and there are certain infections that are very dangerous for a CGD patient that cannot be prevented.

According to the CGD specialist doctor, Jacob's best chance for a longer and more normal life is to receive a bone marrow transplant. He said that the chance of a transplant successfully curing a CGD patient is fairly high. Since Ethan, Kylene, and I had been tested previously and found to not be close enough matches to be donors for Jacob, a nurse searched the bone marrow registry and found two donors who were a very good match, 14 out of 16 genetic markers (16/16 is pretty much only possible with an identical twin). A date was set for Jacob's admission to the hospital to undergo 10 days of chemotherapy followed by a bone marrow transplant. Jacob has been undergoing a number of tests over the past couple weeks to ensure that his body is ready to begin the process.

Yesterday we received some discouraging news about one of Jacob's recent tests. The chest CT scan that he had recently showed an enlarged lymph node in his lung. They will need to do a biopsy on his lung to find out if he has a fungal infection. (This gives us a lot of cause for concern because one of the bone marrow transplant doctors has told us previously that fungal infections are common in children who live in Loma Linda, which is right next to Redlands, and she indicated that [non-CGD] children who are preparing for transplants typically don't know about these infections until they're discovered in the CT scan.) In the mean time, they're postponing his chemotherapy and bone marrow transplant. Instead, he will soon have to be admitted to the hospital for the lung biopsy and other tests. We were told that he will be in the hospital for at least 3-4 days just for the tests (presumably longer if he needs treatment), but we don't know exactly what date he will be admitted. We are scheduled to meet with the doctors to find out more on Monday, February 28th.

If it turns out that he has a fungal infection in his lung, it would be at least several months before he could be a candidate for a bone marrow transplant again. However, fungal infections are very difficult to eradicate completely in CGD patients, and it's possible that he would never fully recover. That would mean that he would never be eligible for a transplant, and he probably would not live many years after that. Jacob is such a remarkable, pure, and innocent child, and we cannot bear the thought of losing him. We deeply hope that he doesn't have an incurable infection.

Please keep Jacob in your prayers. We try to take comfort in the words of James found in the New Testament: "And the prayer of faith shall save the sick, and the Lord shall raise him up... pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man [or woman] availeth much" (James 5:15-16).