Happy Day 100!

Today we celebrate 100 days of Aiden's new life. It has been a long journey, and this is what's happened since our last update:

Taking medications had become extremely difficult, even more so than before. Because he'd not been eating much and his output had still been excessive, his tummy was challenged with every dose. We had been administering meds 6 times a day, and at least half the time caused him to vomit. For a while, we thought it might have been just the anxiety of taking the meds. But when he couldn't keep them down even asleep, it was obvious how hard it was on his stomach.

On Tuesday, 3/12 Aiden had is final spinal tap with chemo and day 100 bone marrow biopsy to check for leukemia. The news came 2 days later, Aiden's marrow is leukemia free and remains 100% donor. What this meant, we could begin making plans to schedule his post-transplant/100 day checkups.

First scheduled, his eye exam on Wednesday, 3/13. GVH has a history of prevalence in the eyes. Not only does Aiden not have GVH in his eyes, but he clearly has no evidence of damage from pre-transplant treatment so far. We know this is a genuine possibility, but so far it’s only good news. His vision is 20/20 and he has perfectly healthy eyes. Although the news was great, it was a difficult visit. It appeared strange for him to be in a place without sick children. You could tell he felt out of sorts. He didn't want to remove his hat, still well aware he looks different. However, he quickly found the strength and seemed excited to be someplace other than home or clinic

Monday, 3/18 we changed Aiden's bandage for his Hickman site for the final time. You can't imagine how excited we all were for this to be the last time. It's been a weekly chore, and a heart breaking experience each time. His skin is so sensitive since transplant, and the tape from his bandage caused terrible pain to remove. Add that to soaking his incision site with straight alcohol and you might understand why he hated the thought of it.

On Tuesday, 3/19 we went to clinic again first thing to check counts and anti-rejection levels. Wow, what a great visit! This was day 96, and we were overwhelmed with only good news. First, his doctors were no longer concerned Aiden was suffering from GVH of the gut. For weeks, Aiden's stools were a mess. His doctor's all worried it may be GVH present in his stomach, and would require a colonoscopy and biopsy to determine the cause. Fortunately, decreasing his daily dose of magnesium has helped improve the situation and elevated any fear that we were dealing with something serious. We also were told we could drop 3 of his medicines. This meant we could move some meds in with others, now only administering meds 4 times a day. It's made such a difference. It still takes a long time to get them all in, but it's been days since it's caused him to be sick. More good news, we now only make 1 trip to clinic per week. Seriously, we couldn't believe this to be true. As much as we've prayed this day would come, it was hard to believe it was actually near. We went home for a few hours, and had to come back for his echo cardiogram to check for any damage to his heart from post-transplant treatment. Although the experience was unpleasant, the news was good. Aiden's heart looks great, we just knew it would.

Thursday, 3/21 Aiden had his Hickman surgically removed. He was so excited to have it out. Although he's not been phased by its presence, it's caused horrific pain on a daily/weekly basis for bath time and bandage changes. Everything went extremely well, no complications with surgery. However, he didn't do well coming out of the anesthesia. In fact, it was the next day before he was right again. For us, this was the most difficult day we have had for some time. He cried all day, a wrenching cry we couldn't help control. It's behind us but this is one of those days we will never forget, for many reasons.

Today is Saturday, 3/23, day 100 post-transplant. Today, Aiden had visitors for the first time in almost 4 months. Today, Aiden played in his playroom with his Mimi, Rog-daddy, Christian and Ashlynn without fear. Today, he walked without holding hands. Today, Aiden enjoyed a bath with water more than an inch deep and without the pain of removing a "Anchor Dry", the plastic cover we placed on his chest each day before a bath to keep his Hickman site from getting wet. Today, he smiled as if he knew this day was different. Today, is a great day and he knows it's only the beginning

Tomorrow, is the beginning of the next phase of all of our lives. Beyond day 100, we gradually move into something normal. Letting people into our lives again, it's scary but so exciting for all of us. He has missed you, and so have we. We have been cautious because we had to, but it hasn't been easy living our lives without you present. We don't know what comes next, but we are excited to find out. God has his hand on Aiden, and our Amazing "A" is ready to experience life as he should.

Our hearts are overwhelmed with joy today! Thank you so much for being constant throughout. You're love and prayers have proven a faithful part of our lives through our struggles. As we celebrate what comes next, we celebrate you. We could not have done this without you! Please, stay with us as we continue to conquer what's next. For all that have followed Aiden's journey and prayed for our sweet boy, THANK YOU! It's not behind us, but we know with you "We Got This"!

A special Thank You to Aiden's donor: May God bless you for your selfless gift of life. We hope one day to hug you tightly for giving us back our boy!

For now, please keep praying!

News Channel 2: Aiden's Story