Welcome to Masen's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting and continue to send your prayers.
On the morning of October 31, 2016 Masen woke up complaining of leg pain on his right side just above his knee. He only complained first thing that morning, just thinking it was growing pains we all went on about our day. On November 2nd Masen started waking up in the middle of the night from pain in his leg. November 4th he had developed a limp. The next day Saturday, November 5th I waited to see how he was feeling thinking the pains would be gone. He woke up in little pain, but as the day went on he was back on the couch just sitting there. Knowing this was not normal I packed everyone up and headed to the after hour urgent care in his pediatrician's office. Once there he was given an x-ray that showed no broken bones or fractures, just inflammation. The doctor said that it was most likely due to him growing and sent him home with instructions to take ibuprofen and if the pain was not gone in 5 day to go his primary doctor. When I questioned that because I had already been giving him ibuprofen since the 2nd and it obviously was not working he just told me every child is different and that it takes time. So, we went home and waited out the next day. Things started getting worse. He was not wanting to lift his leg. Early Monday, November 7th he woke up crying in a lot of pain. It was now day eight and we knew something else was wrong so I took him to Children’s Hospital Emergency. I knew if anyone could find out what was going on, it was going to be them. After arriving there Masen had another x-ray done (the results were exactly the same as the urgent cares), an IV put in his hand to start fluids, and blood drawn. Once his blood work results cames back they were concerned with 2 high readings, his CRP and ESR. CRP stands for C-reactive protein. It is a blood marker for inflammation. CRP is classified as acute inflammation, which means right now. ESR stands for Erythrocyte sedimentation rate or sed rate. It shows the inflammation activity in the body long term. The doctors were more concerned about his ESR being so high. It was 74. The normal rate is 3 to 13, so they admitted him to the short stay unit and started him on toradol for the pain and inflammation in his leg. At this point they were thinking that he had an infection in his leg, so they set us up to see an orthopedic doctor. Once talking with the ortho doctor we learned that he did not believe that Masen had any infection. Masen was then set-up for an MRI under anesthesia the next morning November 8th. We had to wait for about 24 hours to get the results and when they came in they told us that his leg and hip bones were glowing on the MRI. When bones glow or light up on that type of scan it is not normal or good. We knew that. We were told further testing would be done to rule out cancer. Later that day we met Dr. Patel a Hematology/Oncologist. He came in to go over the MRI and told us that he was the person that we would never want to see again, but discussed with us the importance of him being involved. He told us that Masen would need a bone marrow biopsy and a short time later Masen went under anesthesia for the second time in one day for the procedure. November 9th the IV in his hand stopped working correctly, so they had to move it to his arm. Masen was then moved from the short stay unit to the Oncology unit. He loved that his room overlooked the helicopter pad. He watched them land and take off all the time with a huge smile on his face. Dr. Patel worked hard to get results from the biopsy. He was able to get results from the blood portion of the test. Masen’s blood cells were breaking down too quickly, which was another sign of cancer, but that also happens when a person has inflammation. They increased his fluids to make sure the cells were being flushed from his system. Everything seemed to be moving so fast up until we started our wait on the bone part of the bone marrow results. Waiting for these results was horrible. It felt like forever. On November 10th he stopped taking pain meds and had to have an ultrasound done. We were told that they wanted to measure every organ. Since we had not gotten results from the bone marrow test we were starting to get alarmed. Nothing could have prepared us to hear the words we would hear a few hours later. Our innocent, outgoing, polite, sweet little boy had CANCER. At this point we did not know what type. What we did know was that he had a mass deep in his abdomen and that the cancer was in his bone marrow. Three hours later he was having a CT Scan done. Thankfully not under anesthesia and he did great. On November 11, 2016 Masen was officially diagnosed with Stage 4 Neuroblastoma. The CT Scan showed that the mass is the size of a softball and is pushing all of his organs to the sides of his body. It also showed that the mass is wrapped in main arteries and veins. They would not be able to do surgery to take a piece to biopsy or remove it. It is too dangerous. Instead he had surgery to put a central line in his chest. This surgery went great. Dr. Patel came in a short time after to discuss his treatment plan. We focused on the first two cycles because honestly this was all so hard to retain and process. Treatments 1 & 2 he would receive cyclophosphamide and topotecan for 5 days in a row, but he would actually have five 21 day cycles. After 1 & 2 they would harvest stem cells to use later in treatment. After cycle 4 they will scan again to see if the tumor has shrunk enough to remove it. If it hasnt he will do 1 or 2 more treatments to shrink it even more. Once the tumor is removed he will do another cycle and then we move on to later treatments. At 4:40pm Masen got his first neutropenic fever. Doctors and nurses rushed in all at once. It was horrifying for both Masen and I. Right away they took blood from his line and directly from his arm looking for infection in both areas and started him on an antibiotic just in case. His fever did go down and he didn't have an infection. At 6:30 pm Masen went for a bone scan without anesthesia that lasted for an hour and a half. He did amazing! At 8:30 pm Masen started his first chemo cycle. On November 12th his hemoglobin was very low and Masen received his first blood infusion. It did not affect him at all. He slept right through it. November 14th Masen started to become very nauseous and he no longer wanted to eat. He was taking meds every 3 hours to control the nausea. The next morning we decided to see if we could drop one of the nausea meds so he would only take 1 every 6 hours. We didn't want him on any unnecessary meds. On November 17th Masen was released from the hospital! We were all very excited to go home, but going home meant things would be different. Masen was going to need a caregiver. That is my job now and to be completely honest I was not ready. I was scared I would do something wrong. He would need injections and medication each day (he was sent home with 10 medications, a few are daily and the rest are prn). He also would need his central lines flushed and heparinized daily. The central line was the scariest part. I didn't want to forget to close his line or not clean a cap enough and cause an infection. On the other hand going home also meant all of our family would be back under one roof, he would be more comfortable and he wouldn't be connected to an IV pole any longer. He would be free to get back to himself in his own environment.
Since Masen has been home his appetite has been amazing. He lived off of Lunchable pizzas and grapes the first couple of days because it was all he would eat. He runs around and plays almost all day everyday! He fights his injections, but I’m not sure what kid wouldn't. He has only had to take Zofran a few times for nausea and flushing and heparinizing his lines is routine now. Masen had his first clinic appointment on November 21st for blood work, his bandage and caps were changed. His blood work did not come back great. His platelets were low, so he received a platelet infusion directly after his appointment. The platelet infusion affected him oddly. He was fine one minute and then having bad chills and coughing alot the next. The infusion itself was quick and so were the side effects thankfully. His ANC level (immune fighters) was zero. This meant he could not have any visitors or go outside the house for any reason other than to go to appointments. He needs a level of 500 to be around others. November 23rd we went back for blood work. This time around his platelets were ok, but his ANC was at 70. He still couldn't be around others. That meant for the first time EVER we would spend Thanksgiving at home by ourselves. That was weird for us. We are always bouncing around from family to family, but we were thankful to be home and not in the hospital. Friday, November 25th he had another appointment for blood work. All his numbers looked great. His ANC level was at 810. He could have visitors again which was exciting, but not as exciting as the nurse telling him that he would only need to do 2 more injections. His smile was huge! November 26th Masen started loosing his hair by the hand full. I just looked at him and said we are going to have to shave your head. He just smiled and said OK. We had been preparing him for this hair cut for a couple of weeks now, he was excited about it. Me not so much, I was hurt more than he was. The tears wanted to pour out, but I didn't let them. On November 28th we had more blood work done and a bandage and cap change. The results were great and his ANC level is up to 1870! His level needed to be at 1500 to be able to do the second cycle of chemo. November 29th he went to get a dye injection put in his tubes and on November 30th he had his MIBG Scan. That scan took 2 hours and he laid perfectly still for the whole time. I was so proud of him. On Friday, December 2nd Masen has an appointment for blood work, if his numbers are still good he will be admitted to start the second cycle. So... We are packing for his 5 day stay. As Masen's journey continues I will update in the journal section and at https://m.facebook.com/groups/145392219272238?ref=bookmarks
Thank you for your support through this difficult process and please continue to pray for our little boy.