Karly was at her Congestive Heart Failure doctor on Friday. What a great report we were given. The EKG is normal, so the medications must have been the culprit. Her heart sounds good. She may want to add another heart drug so it can work less hard, but all in all GREAT! Her kidneys are a little happier. She will be getting another ultrasound of her kidneys in the next month or two to see how the pressures are going. If it has worsened, then she will need to have them ballooned again. If remaining the same, then just keep doing what we are doing and add the heart medication. Since stopping the medications 2 weeks ago, we haven't noticed much. Her skin has been acting up atypically, but so far she can manage and live with it. Big news was that she tested negative to milk at her 5 month appt. They have a new person at NIH that will be setting up a food challenge lab that Karly will qualify to be part of when it is ready. This is exciting. If this can happen, then there is hope for other foods to follow. She can only imagine.
She started her class 2 weeks ago. She is able to enjoy many things that make her happy. She is able to sleep more normally. She can take everything in pill form now and without cutting anything in half. She is eating without getting any food stuck. She has normal people hours. It is so cool not to travel to NIH every 3 weeks, but I have to say I miss our people there. We do stay in touch though.
Dillon went to be with our Lord Jesus on January 12. His family needs continued prayers through this time and times to come. His younger sister also has DOCK8. She will be much in the same thought processes as Karly having lost an older sibling to this disease. It makes me so sad. I feel this loss for this family and what is to come. Please stand with us in prayer. "For our citizenship is in Heaven, from which we also eagerly await for the Savior, the Lord Jesus Christ." Philippians 3:20
Kelcy will be traveling with her mom later this month to see if her mom can be her liver transplant donor. They have a long road to travel. Please stand in prayer with us for them.
We just don't go to far ahead of ourselves. We certainly have enough to handle in just one day, don't we? "The mind of man plans his way, but the Lord directs his steps." Proverbs 16:9
Love,
Mom
Saturday, January 24, 2015
Saturday, January 10, 2015
Day 169
1 Thessalonians 5:16-18, "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." This verse is one that describes where we are right now.
We are so joyful in Karly's progress. Her doctors claim her as their poster child for the DOCK8 Haplo-Bone Marrow Transplant. They are so pleased with where she is at this point. They even brought in a couple Johns Hopkins doctors to affirm their decision to take her off the nasty Tacrolimus drug. This is huge. They fully expect her to continue to do well. What could happen? Well, she might feel sicker as the cells really go after the infections still in her body. She could develop more GVHD of the skin and gut. BUT do we expect this, NO we do not! Is she still very susceptible to infections, the flu, etc, yes. She must be very careful. If you know you are sick or have been with someone who is sick, please keep you distance. She is wearing a mask and using hand sanitizer, but we must remain careful. She went through a battery of tests on Thursday. She had her cortisol stem test and Endoscopy on Friday. She failed the cortisol test badly, but they are confident this will eventually return to normal. Her EGD was so encouraging, because the eosinophilic esophagitis is getting better. Before you could visually see the eosinophils because the disease was very severe, but now they will need to be counted under a microscope. They challenged her on Thursday in the clinic with swallowing a couple pills. She did it without any problems. This is huge. Now she can start taking all her medications in pill form. Two advantages of this are: taking them once a day, and she will feel less nauseous. The liquid forms of these drugs are nasty. To summarize some of the test results, I'll start with her lung function which appears to be better(not normal), her ECHO is holding at 40%(big improvement from 15%), her chest CT looks good, and her sinus CT is better. Her sinuses are one place the released cells will be working on. Her kidney function is still a problem, but we fully have hope this will get better off the Tacrolimus plus a few other drugs. Her BP is stable although runs a bit high. She appears to be holding some fluid, but as the Creatinine improves we can give her better heart medications. The only negative issue was her EKG which is showing a Long QT syndrome (LQTS) which is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death. This might explain some of her erratic almost fainting spells and lightheadedness. She is wearing a heart Holter monitor for the next 48 hours. A long QT is often associated with medications, so this is a big reason for dropping 4 medications. Again, we hope this is the cause, then it is easily fixed. She will be seeing her Cardiologist on January 23 and getting a repeat EKG. As you hear the good and not so good, please thank God for all that He has done and lift up these new concerns.
This visit was speedy fast and packed full, but we still managed to see most of our favorite people(yeah, you know who you are). Our hearts remain heavy for Dillon and Kelcy. Dillon, a 20 yr old with DOCK8, who was transplanted in March 2014 remains on a ventilator sedated. He needs a miracle. Kelcy, a 10 yr old with DOCK8, has a tough road ahead. First, she will need a liver transplant, then the bone marrow transplant. Her mom writes, "Please send us tons of Prayers!! We're getting ready to go back up to Maryland/Washington. We will be going through the whole process of Kelcy & I being tested to make sure everything is good enough for the Liver Transplant, and I am healthy enough to be her living donor. I'm so excited things are moving forward but nervous at the same time. It will be the last week of this month." Our friends Ellen and Erin got good news yesterday. Erin is in remission from her cancer, and she is almost engrafted. They will get to travel home on Monday. Erin has GATA2 Deficiency Disease(another primary immunodeficiency disease) and was on Karly's transplant floor getting ready for her transplant. Her mom, Ellen, and I became fast friends this summer when we met on the transplant floor. We are so thankful for this good news. I was able to meet face to face the mom of another young DOCK8 girl from Iran who is Day 3 of her transplant. I had spoke on the phone with this mom a few months ago via a translator. I was very grateful to meet her, her daughter, and her husband. May God grant us favor with this relationship. There are so many things to pray about, hence the "pray continually". Please pray with us for these things.
We give thanks in all circumstances, the good and not so good. God is faithful and trustworthy. We believe this no matter the circumstance. My co-worker lost her 2 oldest girls, 18 & 16, on January 2 in a tragic accident. The circumstances feel unbearable, but we know that God is faithful and trustworthy. Please pray for this family. Pray they put their HOPE in Jesus, and they will be protected from depression and self-pity. Hope connects us to heaven where her girls are residing. May they cling to the Father and their burdens be lightened. Romans 12:12, "Be joyful in hope, patient in affliction, faithful in prayer." and Psalm 46:1, "God is our refuge and strength, an ever-present help in trouble."
Thank you my friends!
Love,
Mom
We are so joyful in Karly's progress. Her doctors claim her as their poster child for the DOCK8 Haplo-Bone Marrow Transplant. They are so pleased with where she is at this point. They even brought in a couple Johns Hopkins doctors to affirm their decision to take her off the nasty Tacrolimus drug. This is huge. They fully expect her to continue to do well. What could happen? Well, she might feel sicker as the cells really go after the infections still in her body. She could develop more GVHD of the skin and gut. BUT do we expect this, NO we do not! Is she still very susceptible to infections, the flu, etc, yes. She must be very careful. If you know you are sick or have been with someone who is sick, please keep you distance. She is wearing a mask and using hand sanitizer, but we must remain careful. She went through a battery of tests on Thursday. She had her cortisol stem test and Endoscopy on Friday. She failed the cortisol test badly, but they are confident this will eventually return to normal. Her EGD was so encouraging, because the eosinophilic esophagitis is getting better. Before you could visually see the eosinophils because the disease was very severe, but now they will need to be counted under a microscope. They challenged her on Thursday in the clinic with swallowing a couple pills. She did it without any problems. This is huge. Now she can start taking all her medications in pill form. Two advantages of this are: taking them once a day, and she will feel less nauseous. The liquid forms of these drugs are nasty. To summarize some of the test results, I'll start with her lung function which appears to be better(not normal), her ECHO is holding at 40%(big improvement from 15%), her chest CT looks good, and her sinus CT is better. Her sinuses are one place the released cells will be working on. Her kidney function is still a problem, but we fully have hope this will get better off the Tacrolimus plus a few other drugs. Her BP is stable although runs a bit high. She appears to be holding some fluid, but as the Creatinine improves we can give her better heart medications. The only negative issue was her EKG which is showing a Long QT syndrome (LQTS) which is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death. This might explain some of her erratic almost fainting spells and lightheadedness. She is wearing a heart Holter monitor for the next 48 hours. A long QT is often associated with medications, so this is a big reason for dropping 4 medications. Again, we hope this is the cause, then it is easily fixed. She will be seeing her Cardiologist on January 23 and getting a repeat EKG. As you hear the good and not so good, please thank God for all that He has done and lift up these new concerns.
This visit was speedy fast and packed full, but we still managed to see most of our favorite people(yeah, you know who you are). Our hearts remain heavy for Dillon and Kelcy. Dillon, a 20 yr old with DOCK8, who was transplanted in March 2014 remains on a ventilator sedated. He needs a miracle. Kelcy, a 10 yr old with DOCK8, has a tough road ahead. First, she will need a liver transplant, then the bone marrow transplant. Her mom writes, "Please send us tons of Prayers!! We're getting ready to go back up to Maryland/Washington. We will be going through the whole process of Kelcy & I being tested to make sure everything is good enough for the Liver Transplant, and I am healthy enough to be her living donor. I'm so excited things are moving forward but nervous at the same time. It will be the last week of this month." Our friends Ellen and Erin got good news yesterday. Erin is in remission from her cancer, and she is almost engrafted. They will get to travel home on Monday. Erin has GATA2 Deficiency Disease(another primary immunodeficiency disease) and was on Karly's transplant floor getting ready for her transplant. Her mom, Ellen, and I became fast friends this summer when we met on the transplant floor. We are so thankful for this good news. I was able to meet face to face the mom of another young DOCK8 girl from Iran who is Day 3 of her transplant. I had spoke on the phone with this mom a few months ago via a translator. I was very grateful to meet her, her daughter, and her husband. May God grant us favor with this relationship. There are so many things to pray about, hence the "pray continually". Please pray with us for these things.
We give thanks in all circumstances, the good and not so good. God is faithful and trustworthy. We believe this no matter the circumstance. My co-worker lost her 2 oldest girls, 18 & 16, on January 2 in a tragic accident. The circumstances feel unbearable, but we know that God is faithful and trustworthy. Please pray for this family. Pray they put their HOPE in Jesus, and they will be protected from depression and self-pity. Hope connects us to heaven where her girls are residing. May they cling to the Father and their burdens be lightened. Romans 12:12, "Be joyful in hope, patient in affliction, faithful in prayer." and Psalm 46:1, "God is our refuge and strength, an ever-present help in trouble."
Thank you my friends!
Love,
Mom
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