Sorry for the delay in the post. We came home on the 30th and the medical care came along with us! We have to give Lukey 10 different meds some twice a day. The regimen starts at 5am and goes on tll about midnight. First 6-months after transplant is very hectic with twice a week clinic appointments, meds, and some hospital visits. Talking about hospital visits, Lukey was admitted to GHU after last Monday's appointment for high bp/heart rate. They monitored him closely and prescribed bp medicine. One of the side effects of Prograf is hyper tension or high bp so we may have to deal with that until Lukey's body regulates the levels, I think. We were thankful to come home at least for a day prior to heading to Fairfax for chemo.
We checked in to Fairfax Hospital today to resume Chemo, the original protocol (Cisp,5-FU, and Vinc). We called early this morning but no beds were available and then we got the call that everything was ready for us and to come to the hospital asap. When we checked in, it was a whole different story. Nothing was ready! Lukey was off of feeding since early this morning in view of the full body CT scan. However, after waiting the whole day for a call from Radiology, when we finally went down for the CT, our orders weren't there for them to start and on top of that the Pediatric radiologist was already gone for the day and the adult radiologist refused to do the CT without sedation. Our poor Lukey was without food the whole day and now the plan is to do the CT tomorrow morning under sedation.That means no feeding after midnight. Oh by the way, we didn't have a bed available the whole day and we were waiting in a procedure room. Hungry baby, locked in a room without much to do, no crib, etc... you get the drift:) Anyway, everyone is entitled to have an off day an this is Fairfax's! They have a great staff and genuinely care for Lukey.
AFP (alpha feta protein) is the tumor marker of Hepatoblastoma. When Lukey was dx on Aug 5th the count was over 400,000 and then gradually it came down to after the 4th round of chemo the count was just above 500. After Dec 5th Liver transplantation, Lukey's AP was 15(fifteen!!). Normal count in pediatric body is anywhere from 5 to 20 depending on the school of thought of the oncologist. Well, after Christmas, Luke's AFP level had started going up (we didn't know this until later) first to 30 and then to 69. We were told that there are no guarantees when we started this journey but we refused to believe the report of the man instead we accepted God's plan. We are in a fight that's not physical, I'm counting on God-- we want to beat the cancer and with God's help and your prayers and support, WE will.
Please pray that Lukey's transplant meds accept chemo, and for NO side effects. From previous chemos, Lukey has lost some hearing and has minor effects on kidney functions. Please pray for strength and peace for Lukey. Our trooper has battled long and hard but God has strengthened Lukey and our family to go through this storm. Please pray for Jen, I know she has been through a lot and she needs strength. When no one and no thing can assist your situation, you certainly know that God is at work. Thank you God for your faithfulness, healing, strength, comfort, and miracles. We don't take anything for granted, certainly not your love and fervent prayers. Everyday, numerous people help us manage the day and continue this journey, which already has passed 5 months mark. We don't take the love and kindness of people around us lightly. We thank God for sending the help, without it we would be stressed beyond comprehension. Some came alongside at the beginning and still with us - faithful in deed. Some came in between but sent in at the right time and for a reason. The help is something we started praying for when Lukey was first diagnosed with cancer back in August. We plan to celebrate Lukey's miracle journey and God's love with friends of Luke's Hope soon. I long for that day that we can have you over at our home to honor you and to say THANK YOU. You made a difference in our lives. You defined our future ministry --care for "children with cancer" and to come alongside parents like us. We will take this ministry seriously and prayerfully, and with our service, will honor you for what you have been to us in our darkest days.
Blessings to you in the year 2009. May the Lord show favor upon you and your family.