After 50 long days, Mason was finally discharged on November 9, 2009. Because we both spent the first three weeks together with Mason and nearly a month switching off between the hospital and home with Reilly, we were extremely happy to finally take Mason home and have our family together under one roof. While it was exhilarating to leave the confines of the transplant unit, the mixed emotions were somewhat overwhelming. We were so happy to take Mason home, but we were also leaving the place where the nurses, doctors, therapists, specialists, etc had cared so greatly for Mason.

It is impossible to spend so much time that close to such great and skilled people and not become close to them. We were also in some ways terrified that we no longer had the immediate safety of the hospital and the assurance that if something was wrong help was only a button ring away. It didn’t matter that we had grown completely accustomed to caring for Mason; his medication regiment, his shots, his skin issues, vomiting, etc….all of that was second nature. We had been doing it ourselves with the supervision of the nursing staff for some time now. It was the loss of our safety net that scared us.

When we left A.I. DuPont on November 9th, we knew that we would need to come back many more times for follow-up care. We also knew that there was high probability that Mason would be readmitted if he experienced any setbacks in his recovery. We did not think we would be back on 3A just 2 days later. Sarah had taken him to his first follow up clinic visit and Mason was running a fever...the first one since his initial admission. They admitted him and ran every test for infection, virus, etc. and everything came back negative. This was our first dose of reality.

We were back in the hospital for only 48 hours or so, but the impact of Mason coming home only to go back to the hospital was very difficult for Reilly. Mason’s initial inpatient stay was difficult for Reilly, but he was so strong. Being able to see Mason and us through SKYPE really provided some security. We had done everything we could to prepare Reilly for Mason’s stay in the hospital, but we did not make sure he was ready for the possibility that Mason would need to go back into the hospital. That is why this readmission was especially hard for him. He was not prepared to go to school a few mornings after Mason came home and have his brother be gone when he came home…AGAIN. When Mason had his seizure on day 4, the night before Reilly had said to his Nana “I don’t want Mason to go back to the hospital”. This was BEFORE anything had happened. These two brothers have such an incredible connection, and Reilly is truly Mason’s angel.

Once we were home again, we were managing approximately 17-20 doses of medications per day, probably 2-3 episodes of vomiting, pain management, and reintegration into Reilly’s life. Needless to say, day to day life was challenging, but we were so thrilled to be home in time for Thanksgiving. We have always valued the family aspect of Thanksgiving, but we found this particular holiday to be very emotional. We were able to really reflect on the true things we were really thankful for in our lives. To have both boys home, both sets of grandparents, Uncle Geoff and Aunt Deb and our new baby niece Avery all together was simply AMAZING. We were all overwhelmed with emotions and very gracious of the support we had from our entire family over a very challenging couple of months.

Over the next few weeks we had to tackle Mason’s difficulty gaining weight. He was only tolerating some stage 2 fruits and vegetables and we were feeding him regularly during the day as well as 2 times a night, but we were still unable to get the needed 30 oz of formula/fluids he needed. During a clinic visit when he was 9 months old he was 15 lbs, 10ozs, and the same weight he was at his 4 month well baby check up. On December 8th, we were readmitted again. This time we were faced with the decision of inserting a nasal-gastric tube for feeding. We had been trying to put this off for good, but it was apparent that he needed help gaining weight. We placed the tube, stayed in the hospital for 3 days and then came home to manage the feedings with the help of home care. It was very difficult to keep Mason from tugging at the tube. We had to re-tape the tube to Mason’s face many times and deal with multiple vomiting issues due to the tube feeding volume and the small size of his belly. We HATED the tube and so did Mason.

On December 12th, only 4 days after having the tube placed, he pulled it out himself. We were able to convince Dr Kolb to temporarily refrain from putting the tube back in, and like that, Mason began to take in more fluids and SLOWLY began to gain some weight. In conjunction with the medicinal and nutritional components of Mason’s home care, we also began continued Physical and Occupational therapy at home at the end of November. When Mason was admitted for transplant he was 6 ½ months old and his physical development was evaluated at 0-1 month. He could not lift his head, roll over, or tolerate any tummy time. He was in so much pain that he physically shut down. By the time we left the hospital, Mason was a little over 8 months old. As a result of in-patient PT and OT therapy; Mason was sitting with support, lifting his head up, doing mini pushups, and rolling a couple of times.

We really began to see significant changes and progress in Mason once he began gaining weight and started his continued at-home therapy. By Christmas, he was much stronger and sitting on his own, but we still used a Boppy pillow for security. By January he was able to sit without support and began to bear weight on his legs. By February he was rolling from front to back and back to front and engaging in more interactive play with his therapists and his brother Reilly.

By Mason’s 1st birthday, he was able to stand while holding onto furniture for a couple of seconds. He was now evaluated at 10 months for gross motor skills and 4 months for fine motor skills. He was making such vast improvements in such a short period of time. We knew with continued support and therapy, Mason was going to excel at a very fast rate. The fact that he loved therapy and his therapists was also very important. We were able to see that his social and verbal skills were improving. He was beginning to say words like "Dada," "kitty cat," and "again." It was great to see that Mason’s relative seclusion in the hospital and during home recovery was not keeping his social development at bay. He clearly loves being around other people. We are now able to do normal every day activities like going to the grocery store, having friends over for a visit, and going to a restaurant.

In the months since Mason’s first birthday, he has continued to make gigantic strides in his physical development. He has finally begun crawling. For the longest time, Mason was so close to crawling. On the first day that Sarah took him to a Gymboree class, he began crawling as soon as he was placed on the mat with other children. He has not looked back. Once Mason quickly mastered crawling, he quickly began cruising around all of the living room furniture as well. He quickly took his newly improved standing skills to the rolling walker and is now roaming around the house and back yard.

Another area we have seen great advances in is Mason’s dentition. Back on September 8th 2009, Mason had his first 2 teeth break through. It happened to be the same day that Mason had his central line placed in preparation for his chemotherapy. We didn’t see any additional teeth break through for months. The first teeth that came through were Mason’s bottom incisors. As we were further educated about Mason’s disorder, we learned that late dentition, malformed dentition, or no primary dentition were possible side effects of the improperly functioning osteoclasts present in MIOP. Through the entire process, the top incisors were extremely swollen and looked like they were ready to break through; however, we saw no additional teeth until after his 1st birthday. As Mason’s bones continued to transform and at about the same time his cyclosporine doses were being reduced, we began to see new teeth break through. By May 2009, Mason had 7 (and almost 8) well formed normal looking teeth.

A day we were eagerly awaiting was our initial orthopedic consult with the doctor that would continue to follow Mason’s case as his bones continued to reform and grow. On May 13th, 2009, Mason had his follow up visit with Dr. William Mackenzie at A.I DuPont. He had X-rays taken on his legs, arms, hips, hands, and neck. We were not the only people excited to see the new X-rays, Dr. Kolb (Mason’s transplant doctor) was also excited enough to see his development that he came to the orthopedic unit when we were there to see the films as well. Back at diagnosis, seeing Mason’s X-rays was pretty much the devastating blow and realization that our son had a serious disease.

Seeing his new X-rays along side of his diagnosis X-rays (click on picture at right) was equally as moving in a positive way. Mason is seeing normal new bone growth. Simply amazing!!!!!!! Wow!!!! It is difficult to put into words what it really felt like to see those new films. I think Dr. Mackenzie’s quote was, “I think his bones look phenomenal,” and Dr. Kolb said, “Yeah, that looks pretty cool.” It brought tears to our eyes in the hospital, and we sat and cried together that night after putting the kids to bed. Again, simply amazing.

In June 2010, we were able to enjoy a much-needed family vacation in Myrtle Beach, South Carolina. Mason and Reilly enjoyed their family, the pool, the beach, and had a great time. At the end of July, Mason started walking (see video at right,) and is now unstoppable. On July 28th, he marked his 300th day post-transplant, and on July 29th his port was removed - a small port used for transfusions and infusions, now no longer needed. While everything is on a positive note, as a mother I am struggling with the emotions that i pushed aside for so long.

FEBRUARY 20, 2012

It is really hard to believe it has been so long since we added up to date information to let everybody know where Mason is today. So much of the past year to a year and a half has been spent just enjoying our family and appreciating just how fortunate we are that Mason has had such a positive and successful transplant. Where Mason is today both physically & medically is nothing short of a miracle. Quite honestly, looking back at the moments in time we captured in our descriptions here in Mason's story really puts things into perspective. Mason would never be developmentally where he is today without the support he received.

After coming home from the hospital, Mason received continued treatment from his dedicated Physical and Occupational therapists. For just over two years, Shonali Jog and Courtney Barrett have worked continuously to keep Mason in line with his milestone developments. He has now reached or surpassed all of his developmental milestones and as of Feb 2012, he has been successfully discharged from both therapy programs. Thank you to Shonali and Courtney. Without your love and dedication, Mason would not be where he is today.

One of the other challenges of having a young child receive a stem cell transplant is the complete reset of the immunization schedule. Once Mason came home and continued to get healthier, he had to begin the process of reintroducing his entire immunization program. Everything he had received prior to transplant was null and void because his entire immune system was brand new. Over the past two years Mason has followed the modified immunization schedule for transplanted children.

In February 2012, he had his 3 year annual check up at his pediatrician and received immunizations that now put him right on schedule with where he should be for a completely normal 3 year old boy. Other items of note from his routine checkup include a weight of 29.5 lbs (25%) and height 35" (5%). As a side effect of his condition, Mason's height has always been off the charts low. However, we learned after an endocrinologist visit that his growth hormone levels were normal. Because of that, we accepted that Mason was more than likely going to be very small....after all he really didn't have much family height to rely on in the first place. Therefore, it was kind of nice to see that Mason was just cracking the lower boundary of the growth charts at his 3 year check-up. Mason's hearing and vision are both normal. Cognitively, Mason is speaking in complex sentences and continues to become more independent with daily dressing and self care! Actually he is quite stubborn when it comes to his own independence

Over the past two years the frequency of Mason's necessary medical care has virtually disappeared. What were once routine visits for transplant follow-up has now become an annual follow-up. There were numerous trips to monitor improvements in ongoing eye issues and the changes as Mason's new cells continued to remold his bones. Today, the only medical follow-up that Mason receives is periodic ophthalmology and orthopedic care. At his last eye exam with Dr Jin, there was no longer any real noticeable nystagmus or drifting in his left eye. More notably though is the fact that Mason is no longer exhibiting any nearsightedness in his left eye either. He has gone from needing glasses prior to transplant, to continued post transplant nearsightedness, to now where he is NO LONGER nearsighted!!!

It's difficult to decide which part of Mason's progress amazes us the most. Mason's blood counts, vision, bone growth, and physical development are all normal but what he has experienced and gone through during his journey has been anything but normal. Looking back at the journey can bring tears to our eyes. Thank you everybody for all of your support and love. Keep an eye out for a photo montage to see where Mason has been over the past year or two.