March 31, 2011
God has indeed showed himself faithful once again to our family and I feel in awe of His kindness and grace. The past few weeks have been among some of the most trying of our life. Halie's last round of Immunotherapy was difficult beyond words as she began to have Neurological side effects. She slept for over 23 hours straight at one point the Dr.'s were concerned she'd had a stroke. No idea at the time if the effects were permanent. She was unsteady in her walking and was involuntarily jerking (seizure like activity) and having problems with her eyes before during and after the treatment was being administered. I won't go into all of the details suffice it to say Jason and I had alot of praying to do to know if we would continue the trial or not. Neurological side effects are all in the rare but serious category and after meeting with Neurology and our Oncology team it became apparent to us that the risk were out weighing the benefits. But we had time to make a decision. During the week that followed we had Halie's Disease Evaluation scans. Three days of Bone Marrow Aspirations, CT scans of the neck, chest and abdomen and MIBG to show if there is any "Evidence of Disease." Friday took along time to get here as we waited for the results. Dr. Louis called late in the afternoon with the amazing news NO EVIDENCE OF DISEASE!!!!! Praise God! It struck me later that day that we are 6 months with clean scans. What a blessing and testimony of God's power, love and mercy for our family. He is faithful, regardless of the results, we have learned to trust Him in the hard times as well as the times of rejoicing. He is good. The conversation quickly turned back to the Trial. Do we continue? Do we stop. The answer seemed so clear honestly that we were done but there are doubts and fears. For Dads and Moms there is no easy answer. If we stop, has she received the benefit from the antibody or are we putting her at risk for relapse? If we continue, do we risk putting her in a coma or causing swelling of the brain. I confess I have wrestled with this question but God pulls me back with Jason's stalwart character. Again God has proved Himself faithful. As my Mother-in-Law keeps reminding me God is near to the brokenhearted. He came near. What was my trust in? God or the Immunotherapy? He lead us down this path and if we are trusting Him then we are blessed to see when He says stop. Her life is in His scarred hands and there is no safer place for her to be. His love for this child surpasses mine as hard as that is sometimes for me to fathom. He is our Father. Yesterday as I prayed for my family the Lord showed me how He has grown my trust in Him and that as my Father He would withhold no good thing from His children when they are truly seeking Him. And, He gave me rest in Him (Well... as much as my human mind can rest.) Sometimes it is a battle to give it all to Him...I try to take it back then give it to Him again.... I am thankful even though I am sinful and flawed, He is faithful and true. He provided the answer. Halie's Doctor called late in the afternoon and after much deliberation and seeking answers...we have an answer. As I write this blog entry I am waiting to take my sweet girl to TCH to have Halie's central line taken out. We are done with Immunotherapy. We will continue to place our trust in Him. The Lord gave us an answer that only He could have in a way that we saw Him and we have a peace with trusting Him. This is His answer. We will continue with Acutane for three more cycles but we are done with Hospital treatments hopefully forever. We will scan again at the end of Maintenance and that will probably be our hardest set of scans as we will be the longest time without "active treatment" so please continue to pray for Halie. For now we rejoice that God has heard our cries. He is more precious to our hearts than ever before and I beg of you if you do not know Him cry out to Him for a saving relationship. He is our refuge, our strength our protector, our Father, our Savior, our God. (Psalm 31: 14-16) "But, I trust in you, O Lord, I say, "YOU are my God", My times are in your hand. Thank You Jesus!!!!!!!
at 7:23 PM