Here is our story...
In late November of 2012, a simple fall while playing soccer would soon send us on a ride we never expected. A ride that took us from an MRI scan to the ER, to the Pediatric ICU for a week and surgery.
Randy came home from school one afternoon and had told us that he fell playing soccer that day and it hurt his neck. Well, for those of you that know our son, falling is just like walking for him. He LOVES to fall and be dramatic at any sport, or as he says, "play like the pros" and he is good at it to. So, when he said he hurt his neck, we as parents of course looked for all of the warning signs of injury for the next few days. The only sign we had was a little stiffness so we followed our regular line of care with Dr. Marcotte and went on with life. Randy continued his "workouts" as he calls it, riding his bike, playing soccer, baseball, riding his scooter. As the weeks progressed he seemed to loosen up and said he was feeling better. Christmas week he complained of a small arm ache a couple of times but was soothed by a hug and a Tylenol. He also started hanging his head to one side. Every time we told him to straighten his head he would tell us "It is straight". We took our annual week after Christmas vacation up north and after close watch we felt we needed to get him in for an MRI to see what was going on. Of course they were not able to get us in right away and we had to wait till the end of the week.
January 11th, 2013
Today we went for the MRI. Wow, Randy did great! He held so still that the technician ask, if he was willing to share his secret. Rich had been telling Randy the entire time that they would go for a bike ride when they got home if he held real still. We did the MRI, headed home, went for a ride, ate dinner and then received a call from Dr. Marcotte telling us that the MRI revealed he had a fractured C5 vertebra. After that discussion we headed off to the ER at Cardon Children's Hospital in Mesa so we could get fitted for a neck brace. Rich even made a comment that we should get there right away so we could be home in a couple of hours. We arrived at the ER about 6:00pm and immediately after telling the nurse we had a fractured C5, she put him in a brace and off we went to an ER room. Within about an hour after the ER doctor had seen the MRI results we were told that we were being admitted to the Pediatric ICU and we would meet with the Pediatric Neuro Doctor in the morning and that Randy would need surgery. At this point, we were in shock.
We didn't understand why we had to be admitted and in the ICU at that. All doctors and the nurse would tell us is that we would have to wait to see the Pediatric Neuro Doctor in the morning. They were amazed and shocked that Randy had no loss of physical strength or movement, that there was no sign of paralysis because with what they were seeing in the MRI, there should be. Needless to say, Rich and I were up all night and on an emotional roller coaster that wasn't stopping anytime soon. All we could do at this point was thank God for keeping him safe and carrying him in his hands.
We were finally moved into the PICU (pediatric ICU) at 4:00am. The nurses got Randy all hooked up to the monitors and settled in. Dr. Moss, the pediatric neuro doctor didn't make it in until the early afternoon to see us. We sat down with Dr. Moss in front of a very large computer monitor that was displaying one of Randy's MRI films. Dr. Moss looked at us and said, "This is one lucky boy. With this kind of damage there is no reason he shouldn't be paralyzed from the shoulders down." He continued to tell us that with just a fall while playing soccer that it could not have done this amount of damage. He felt that there was either an infection or a tumor that had compromised that area. He couldn't explain why his C5 vertebra was completely missing and what was in there that was pushing into his spinal cord. He looked at both of us and said, " you have no other option than to do surgery to figure out what is in there, replace his C5 vertebra, install a post and then plate his spine from C4-C6. At this point we were told because of the severity of his neck we would remain in the PICU our entire time at the hospital. Besides remaining in a state of shock for what was happening and what was to come, We continued to thank God for sparing Randy from what could and should have been devastating. For the upcoming week we would need to do a CT scan and a bone scan, to see if there is anything else going on in his body. Dr. Moss would also consult with another adult neuro surgeon to assist in Randy's surgery because he had not done one to this extent on a child before. The adult neuro surgeon was more familiar with this type of surgery because as people suffer with their bones deteriorating with age it is common to have to do this type of surgery, however, that is not usually until they are in their 50-60's, not 7 years old.
We were told, for the rest of the day and the next day we were limited to staying in our room and walking around the PICU floor only. Well, to keep a 7 year old calm and low key not to mention an extreme sports 7 years old calm and low key is not the easiest challenge. We quickly turned to movies, ipad games, board games, cards, coloring and yes mom even made his keep up on his school work.
January 13, 2013
Randy had his IV put in today and went for his CT scan. Man did he take it like a champ. No tears or anything. He has been such a rad kid. He actually thinks this entire thing is pretty cool. He loves all the big machines that take his pictures and loves that he is the only kid in his class that can say he broke his neck. He was also excited to get to have his sister come and hang out with him. It has definitely been hard for her to suddenly be tossed to the side amidst the chaos.
January 14, 2013
Well today he got to enjoy another big machine. Today he got his bone scan done. It is similar to an MRI machine and yes you do have to hold very still or you have to redo it. Once again Rad Randy amazed the nurses by being awesome. They got great pictures and Dr. Moss said the reading on his bones were great! His bones are very healthy except for hi C5 area. Wow, what a relief! Praise God!
January 16, 2013
Today we were told that Randy's surgery will be tomorrow. Dr. Moss said the surgery would take about 3 ½ hours. He confirmed that in Dr. terms, they would be doing a C5 corpectomy for decompression of mass and pathological fracture, C4 to C6 anterior interbody fusion, structural interbody graft from C4 – C6 and C4 – C6 placement of anterior cervical plate. We are still trying to grasp all of that.
January 17, 2013
It was a tough night last night. About midnight the nurses had to wake up Randy to take blood in order to run his blood type test incase he needed a blood transfusion in surgery. This was not pretty!!! Daddy had gone home to stay with Jenna so it was just Randy and I. The nurse warmed up his finger and did a finger prick to get his blood sample, unfortunately it was not successful so she needed to prick him again. With a mix of emotions and being tired, Randy was not going to let her prick his finger again. Finally he opted for a needle instead. Thankfully this was more successful and he only cried for a little while. Daddy made it back to the hospital by 8:30am and I took off for home to get cleaned up before Randy went into surgery. While I was gone, they let us know that he needed to do another MRI with contrast before surgery. This MRI took about an hour. Randy is so awesome and Rad and did an amazing job with out complaining. Randy even had a surprise waiting for him in his room when we got back from the MRI. Grammie and Papa were hiding behind his door and surprised him. Thank goodness they were able to get back into town before the surgery, he was excited to see them. About an hour after the MRI they came and took us back to pre-op. Ok, if we thought the ER was hard, wow, pre-op was worse. Yes, we knew what was happening now but to send one of your babies off for a major surgery, now that is hard. Dr. Andlakar, the adult neuro surgeon went over exactly what the procedure would be, also informed us that he may at some point have to have the plate that they are putting in also taken out. He also said that usually when you take out supporting discs that down the road it may cause the other discs that are compensating that area to bulge and in Randy's case they would bulge toward his spinal cord again. Definitely not what we want to hear but need to be aware of. After that, the anesthesiologist came in and let us know his procedures and that after he was sedated it would take him a bit to get all of his monitors hooked up to Randy's head, fingertips and toes so that he could monitor all of his sensors since they would be working so closely to his spinal cord. He also prepared us on what to expect in his recovery from the anesthesia.
Let me take you back a couple of days. We found out that Dr. Andalkar the adult neuro surgeon is the surgeon that Randy's "Uncle" Jess works for. "Uncle" Jess supplies and teaches surgeons about a line of back surgery parts called Lanx. Well, long story short, Dr. Andalkar decided that they were going to use the Lanx part for the plate that would be mounted to his C4 and C6. This meant that "Uncle" Jess was able to be in the OR room during Randy's surgery. Wow and Wow!!! Once again God showing his hand during this entire ordeal.
It was time to head off to surgery. We all gave Randy big kisses and sent him off with the OR nurses and his buddy bear and his chocolate flavored oxygen mask. Randy was all smiles and ready to go!
Rich and I waited in the waiting room with my parents and two of my dearest friends. There is no way we could have made it through any of this without the enormous amount of prayers and support. Thankfully were we not only getting play by play text updates from "Uncle" Jess throughout the surgery, the nurses were awesome and came out several times to speak with us and update us. What was anticipated to be a 3.5 hour surgery only took 2.5 hours. The Dr.'s each came out and let us know that there was definitely a tumor that had basically eaten/disintegrated his C5 Vertebra and had also slightly attached itself to his spinal cord. The tumor was dead and was confined to just that area. They were able to remove it all and sent out 3 separate samples to be tested. They removed the disc below C4 and above C6 and put a post between C4,C6. They used a piece of cadaver tibia bone to rebuild his C5 vertebra then they put the plate on C4-C6 to stabilize. Randy's body did great in the ER there were no complications at all. "Uncle" Jess even said Randy was joking with the Dr.'s and nurses before he was put to sleep. He wanted to know what everything in the OR was. Randy told us later that he even tricked the doctors. He said when they asked him to count backwards from 10 he told them he doesn't count backwards he counts forwards. He thought that was pretty funny.
About an hour after the surgery they brought Randy back into his ICU room for recovery. He was very emotional and crying when he started waking up. His throat hurt, and as much as you try to explain before hand it is still hard to understand. He kept asking what happened. Probably one of the hardest things Rich and I have ever had to go through. They gave him a breathing treatment to help with the inflammation in his throat and he fell back asleep for a little while. When he came to the second time he was so much better. He was such a champ.
January 18, 2013
Overall we had a pretty good night. Besides the nurses having to wake him every 2 hours for vitals, check his reflexes he did good, until it was time to pee. It is never fun to pee after having a catheter. That was about 30 minutes of crying and refusing to pee. We just told him it was ok to scream as loud as he wanted and that it was only going to hurt this one time. Well he screamed pretty loud along with a lot of crying but he got it out then proceeded to go about ever ½ hour throughout the night. He also ran a slight fever but it was gone by morning.
Randy was definitely ready to eat something. We started off slowly throughout the night with water and ice chips, eventually went to some juice. First thing this morning he wanted French toast. He didn't want jello or anything soft. He wanted food. We convinced him to try small bits of a biscuit and some fruit he did fine.
Dr. Moss and Dr. Andlakar came in to see us this morning and asked Randy to move his feet and wiggle his toes and before they could even ask to see him move his hands he had them up in the air waving them. Both doctors laughed. Dr. Moss felt that if Randy was not in pain and was comfortable and all vital signs were good for the day that we could go home to finish recovering. Both Rich and I were shocked. It felt just like it did after we had Jenna and they came into tell us we could go home. We both thought wait, we aren't ready, what do we do with this baby??? Well we felt the same way. Wait, we came in Friday and were basically told that he should be paralyzed from the shoulders down and now you are saying his fixed, take him home??? Aaaahhhhh! Well, Randy did great throughout the day and by 6;30pm, nearly 7 days to the minute when we walked into the ER we were home. So much for a quick 2 hour trip to the ER.
January 23, 2013
The past 5 days we have been at home recovering. Randy is so amazing. He has been sleeping all night and getting great rest. Our days are full of movies, ipad games, DS games, walks and quiet time. "Uncle" Jess, his wife Jamie and daughter took Jenna with them to Disneyland for the long weekend. It was a special time for her, lots of attention and lots of fun. Again, we couldn't be more thankful for good friends who have stepped in to do whatever they could.
January 24, 2014
We had our post-op visit with Dr. Moss today. Everything is healing well and we can take off his neck brace for a few minutes at a time, a few times a day, while he is sitting still. This will allow the neck muscles to begin strengthening. Other than that, the neck brace will stay on, keeping him safe and stable should he trip or bump into something. He will also continue to sleep with it on. We may try going back to school a couple of days next week for limited hours. (of course, mom will be right next to him in school if we do). We also received the pathology reports back on the tumor. The tumor is called Langerhans cell histiocytosis. They were able to remove the entire tumor during the surgery but to be safe it is recommended that we see an Oncologist next week to discuss the need for possible treatment. We will also see Dr. Moss again next week with x-rays at that time.
We are ever so thankful and overwhelmed by all of the love and support that has come our way. May God Bless You!
We chose not to attempt going to school this week. We decided that it was best to take another week to rest and get stronger. We also wanted to stay away from the extra germs that go along with being at school. I couldn't imagine him getting the flu and vomiting. It's hard enough for him to brush his teeth and then try and spit out his toothpaste without getting it all over his collar pads under his chin. Randy's teacher came over a few times last week and did his lessons and he even took a couple of tests. She has been so amazing and such a blessing during this time. Randy was really starting to turn a corner in his schooling and we didn't want him to lose that momentum. Unfortunately Randy's teacher, Mrs. Hantla found out this week that her precious grandson has been diagnosed with Leukemia. We would like to ask you to please remember them in your prayers as well when you are praying for Randy. He has been admitted to the same hospital Randy was at and we plan to stop by and see him after we are done with our appointments tomorrow. We are also going to drop off some gifts for the "toy closet" that they have in the pediatric ICU. Randy was comforted a few times by being rewarded with a new toy from that closet while we were there. We wanted to bring some stuff back that could bless other children when they have to be there. Randy still prays for the other kids that were in the ICU the same time he was. Unfortunately most of them seemed to be babies/toddlers. Randy counted the number of rooms that had cribs in them when we were there and it was 9 rooms. Randy prays for those 9 babies still.
It's been 2 weeks since Randy's surgery. He is a real trooper. Adjusting to his different playtime activities, and special quite times with mom, dad and Jenna. Today we had our first appointment with the Oncologist and then we headed upstairs for our second follow up appointment with Dr. Moss. Dr. Onimoe is the Oncologist that we saw today. She explained a little more about his type of tumor and that it is a tumor that they see, they just don't see it very often at all. The Langerhans cell histiocytosis is a disease that causes an over production of bone marrow cells. Your bone marrow cells eat the bad things in your body. When you have an over production of those cells, the cells then start eating good things. In our case it was Randy's C5 vertebrae. For short it is called LCH. It is not a normal cancer but it can act like one and is treated as if it is. This can be an ongoing problem or an isolated issue called a single site tumor. While we there they drew blood in order to run a complete blood screen on him to find out if blood/cell counts were normal and we will get a chest/lung x-ray. If they don't come back normal that will tell us if he has anything attacking any of his organs or other areas in his body. The bone scan while we were in the hospital confirmed that the rest of his bones were healthy. It took me and 3 other nurses to hold him down in order to draw the blood. He was not about to let them poke him again. It was a good thing he was sitting on my lap and not facing me because I think I was crying as hard as he was. He just kept screaming and fighting it until they finally got the needle in to draw the blood. He said later that it really didn't hurt, he just was done getting poked and didn't want to do it. We talked about how important it was to do it in order to make sure that there was nothing else bad in his body. We will go back next week to get the results. We walked upstairs to see Dr. Moss next. Dr. Moss removed the second bandages off of Randy's surgery incision. The incision looks great. It is a little over an inch long. It is in a little crease in his neck and should blend well as he grows. We will continue to remove the collar for short time periods each day to continue to strengthen his neck muscles. We are most excited that he will be able to wash his hair fully for the first time in 3 weeks. We left Dr. Moss' office and headed back over to the Cardon Children's side of the hospital to get our x-rays. Randy loved that part. Him and dad put on their x-ray bibs and got'er done. They did the x-rays of his neck, lungs and chest. I stood behind in the computer room and checked out the pictures. Wow, it was kind of creepy to see the plate and screws in such a little neck. It looked good though. Randy thought that was the best part, he said he really was like Iron Man now. After 5 hours at the hospital we were finally done and headed home.
Randy's class has been so amazing! Since he has been gone they have sent numerous cards and get well wishes to Randy. Jenna's class was awesome too. They also flooded him with notes of encouragement and prayers. He has loved that and missed his class so much. Today I told him we could stop by and say "Hi". Man were the kids excited to see him. They were also very nervous to touch him or come near him. He probably looked like an alien to them with his collar on. We gave a short little speech on what happened (in kid language) and that answered a few question for curious kiddos. It is so cute to hear how they understand what happened. We will start half day school the beginning of next week.
Well, tomorrow morning will be Randy's first day back at school. We will definitely be starting off slow and yes, mom will be right by his side. Randy is a little nervous as well. We talked about how it's not that we are afraid he will do something to hurt himself but it's the other kids that make us nervous. Kids are kids and they love to run and play and he doesn't need to get knocked over by one of them. Will try to get some sleep tonight, I think we all have a little bit of anxiety.
We have survived the first few half days of school so far. It was great that we started back this week. At the beginning of the school year the teacher sent home the schedule for what she calls "Top Dog" or student of the week. It just so happens that Randy's "Top Dog" started this week. That meant that he got to sit in the special desk by himself. That is great it kind of kept him out of harms way. I have gone and volunteered in class all week and Randy and I, along with a few of the girls from his class would take short walks outside around the school yard during recess. I tell you what, those little girls missed him and sure put on their mothering hats to make sure Randy was safe. They did not stray far from him. The boys were glad to see him but it was far more important for them to get their playtime at recess. We stayed each day up until lunch time and then we would head home for a little quiet time and we would finish up the rest of his school work at home. Tomorrow will be have our follow up visit with the Oncologist to find out the results for his blood draw. I have definitely been praying hard for clean results.
PRAISE GOD!!!! We saw the Oncologist this morning and Randy's level from his blood draw came back clean and perfect. We couldn't be more happy. This is great news. This means that the LCH will be labeled as a single site tumor, that it is not attacking any organs in his body and he will not need any type of chemo treatments. Now, this does not clear us of any continued testing that he will need down the road. He will continue to need to have his blood drawn occasionally and to also get additional bone scans, however, for the LCH to come back and attack his organs is as rare as it was for him to get this in the first place. It would be more common for it to attack his bone if it were to return. The doctor said, this also is pretty unlikely but not impossible.
Today, I (mom) am also celebrating my 40th birthday. This news is the best gift I have ever been given. What a great day!!!
We left the doctor's office and took Randy to celebrate. He chose to celebrate with a big cinnamon roll.
Tomorrow Randy will have his special show and tell at school. He has decided to bring in his extra collar and let his friends try it on so they can get an idea of what it feels like. Dad is also going to bring in his RC car for Randy to show the kids. He is super excited for that.
Randy has been doing great. We are still taking things easy and he is still only did half days at school this past week. He has been pretty tired and irritable but he is toughing it out. It's just hard when you have so much energy bottled up and you aren't able to get it all out. He hasn't been able to fall asleep very easily at night and seems to just be a little off. I think one of the hardest things is just getting back into a routine. This goes for all of us. Not much else seems to be getting done. I am so thankful that we have had so many amazing friends that have brought us food or just been there for us whenever we need them.
Rich's mom will be coming into town on the 25th and we are all excited to have that time with her. We chose to not have her come down from Montana while Randy was in the hospital and that was so hard for her. She can't wait to get here and give him a big hug.
Next week Randy will also be starting to go to school all day. I will still walk him into class each morning and get him settled, shoot I will probably just stay all day, I don't know if I am ready to just leave him. I will definitely be there during lunch time. We will go out to lunch together and then get some walking in or just hang out in the classroom and play. At this point, he is still not cleared for any time of recess.
Today I sat in my van in the parking lot of Randy's school and spent most of the morning call on the bills that we have received so far. For the most part I was trying to figure out what some of them were for and who some of them were. I had no idea that there was a separate company that just came in to monitor his neuro activity during the surgery. That was a team of people on its own. Then, we saw 3 different doctors in the ER in a matter of 5 hours, Oh guess what, each of those are billed from a separate company. Oh my word, I don't know if I will be able to keep it all straight. Now, I have been around enough to not be afraid to ask for them to discount our bills though. They do work with you a little more on that especially when you don't have insurance and you are paying out of pocket. The only problem though is that they will give you the discount but only if you can pay the discount amount in full. Wait, are you kidding me!!!! That would probably be fine if I was taking my kid in to the doctor for a check-up and my bill was $200.00 and they would discount it down to $100.00. We are talking in the THOUSANDS of dollars for each one of his bills. I guess they figure that one of them will at least get paid a large sum and the rest will just have to hang on for the long haul till they are paid off or they quit trying. Well in our case they are just going to have to be happy to get their payments one month at a time. Thank you to so many of you who have so generously donated through www.randysmiracle.com every bit is a blessing and will all go towards his medical bills. As we get settled and back into a normal routine we will hopefully be able to hold a few fundraisers. Like Randy's Miracle Facebook page so you can stay in the loop on a day to day basis.
Randy had a special visitor this week. His Aunt from Nevada came for a surprise visit for mom's birthday and to see Randy. She even went to school with us one day and got to meet his class and have lunch with us. Randy loved having her there. He especially loved playing cars with her in the classroom after lunch.
Today we saw Dr. Moss again. He is really happy with Randy's progress. We are still to keep his collar on all day but he can start sleeping without it. We can also take it off for about 30 minutes at a time but only if he is sitting down and not moving around. I am sure he will enjoy that little bit of freedom. I could not imagine having that collar around my neck all day long. We do change out his pads on the collar about every other day but as it gets warmer here, they sure get sweaty and stinky fast.
Grandma Cook got here last night so she was with us today at the doctors. We also got to go and watch Jenna in her first play at school. Randy loves his sister so much and was so excited and proud to watch her perform.
Sleeping with no collar...not going well. He is so use to sleeping with it on that it is taking some time to adjust. He is not sleeping well and is waking up throughout the night. We decided to put it back on tonight so we can all get some sleep.
Today we got a call from News Channel 12! They had heard about Randy and seen his Facebook page and want to come and interview him for their EVB Live afternoon program. Wow! We are so excited and thankful for this opportunity.
Whoa, what a week. Last Friday Randy was running a slight fever and was exhausted so I kept him home from school hoping that some extra rest would put him back on his feet. I was a good mom, I even took him in to his regular pediatrician to be preventative. Well, none of that worked. He ran a fever all weekend and I kept him home on Monday also. To make it worse, Tuesday was his first field trip and we decided that it was probably best for him not to go. It was a trip out to Shamrock Farms. He had been last year and it requires a lot of walking and we just played it smart and got some extra rest. He went back to school on Wednesday. We are definitely looking forward to Spring break the next two weeks though.
We did enjoy our time with Grandma Cook while she was here. The days he was at school she got to come and sit in his class for a bit and joined Randy and mom for lunch at school. She even spent some time on the teeter-totter with Randy on the school playground. It was so good to see them together. It was really hard for her to not be here when he was in the hospital and going through his early stages of recovery.
Today we did our interview with Tram Mai from news channel 12. What a sweet lady she is. We kept both of the kids home from the morning part of school and we spent about 2 hours with her. Both of the kids sat down and talked with her as well as Rich and I. The kids didn't even flinch with the camera on them. Rich and I were so nervous just trying to hold it together and not cry, well, we did cry. That's okay though, we will probably still cry years from now when we talk about it. Not so much out of pain and fear but out of Joy for all that God has brought us through. His segment will air on Monday, March 11th.
The kids are had a great first week of spring break. We decided to go ahead with our annual spring break trip to California. For one, we booked and paid for our place 6 months ago and at the same time we had also purchased Lego Land tickets. Well, it didn't quite go as we had planned 6 months ago but it worked out great, besides mom being sick all week. We left on the 10th and drove over to Cali. Decided we would still go to Lego Land. Randy and Jenna have been on a Lego high for quite some time now and since we had been a couple of years ago we knew there was enough calm stuff that Randy could do also. The kids had a blast building Legos, we watched a few shows, Jenna and dad hit a few of the roller coasters while Randy and mom chilled in the kiddie area. Randy was able to go on a laser shooting ride and one of those rides that rises up and down on a tall pole. He loved it though. The best part of our Lego trip was when we were in one of the Lego building rooms, one of the employees, Renata had come over and talked with Randy for a bit. She asked him what had happened that he had to wear his collar. Randy told her he broke his neck and had a tumor that ate his C-5 vertebra and now he had metal in his neck. A few minutes later she came over and asked me if she could show him something special that not many people get to see. I said "sure". She took all of us to the back side of the Lego building room and unlocked this door. When we walked in it was a small 5 x 7 room that had pictures of her with different kids/families all over the walls and on the floor were these big bins. Basically this was their private room where they would show you how Legos are made. The big bins were full of small polymer beads. She unlocked another door and took us in a room with this big maching. She poured some of the polymer beads in to the machine and had us watch as the machine melted the beads, then pushed the melted beads down a big metal mold, then the other mold pressed against it to form the Lego. She had the kids put their hand under the ramp and each of them got to catch their own brand new Lego. Well it didn't stop there. She made a special Lego for them that was cooled melted polymer attached to a clear Lego that was full of the solid small polymer beads then she had us take their new Lego they got and get it engraved with their names and she put those on top of it. They were stoked. Best part of their time at Lego Land. Dad loved it too. I think he was even a little jealous he didn't get a new Lego with his name engraved on it. I cried almost the entire time she was showing them everything. I was overwhelmed with gratitude and just so impressed with her genuine love and spirit. She had so many kind and inspiring words to say to us and even told us she would be praying for him and that God must have amazing plans for Randy.
The rest of the week was spent relaxing, at the hotel, walking along the beach and Randy even took a few dips in the Jacuzzi with dad when there was no one in it. He enjoyed taking off his collar and being able to freely move around in the water. Yes, of course once he got comfortable in the water he started to push the limit a bit so it was time to get out then.
The kids also enjoyed watching dad race his mountain bike in San Dimas, California the 2 days before we left. Randy got to hang out with the Trek Factory Racing team. He even tried his hand out as assistant bike mechanic. This was the first time the entire team had seen him since his injury. It was great to hear them all encouraging both of the kids and just loving on them whenever they got a chance. Dad did great in both of his races, finishing on Saturdays race and placing 3rd in Sundays short track race. The 2nd place racer in his race came over and talked to Randy after the race. He told us that when he was 19 he had crushed his C-5 while he was racing his motocross bike. He was down for about a year and then took it up again. At the age of 40 he is still actively racing mountain bikes. What an encouraging testimony that was for us.
Randy's news channel 12 segment also aired on March 12th. We have linked in onto his posts on his Facebook page so if you have not seen it, you should. Go to Randy's Miracle Facebook page and scroll through his posts until you find his interview. Hopefully we will also be able to link it to his website at www.randysmiracle.com.
Yesterday Dad took Randy down to Cardon Childrens Hospital to get his follow up xr-ays done before we saw Dr. Moss today. Although they had some wait time there, dad said it was nice to be able to just walk out of the hospital and not stay. We saw Dr. Moss and he took a look at Randy's x-ray and told us that it looked so good he was going to put it in his portfolio. What great news. He also told us that we could take the collar off. What?! Just take it off, boom, that's it? Ok, wait, we are not ready for that. Yes, that is exciting but no, no, no! All Rich and I could say was, "he is not a normal kid. You need to spend a day with him". Dr. Moss told us he could kick a ball or shoot a couple of baskets maybe even take a short ride around the block. Ok, back it up...just last week I was playing with Randy and he begged me to just play a little baseball with him. Apparently a little baseball to him was running and sliding into bases, diving for balls and nearly giving me a heart attack while he did it. Needless to say we stopped playing a little baseball. So if Dr. Moss thinks this is a kid who is just going to kick a ball and shoot a couple of baskets, he is crazy. Basically we will gradually start the removal of the collar and teach Randy safe boundaries for when it is off. Ok, we can adjust to that. I have been praying for this day to come in 2 ways. The first is thank you God that you have protected and miraculously healed our boy and we are blessed that we will soon start to get back to somewhat normal with him. The second way has been God we are going to need to trust you more than we ever have once the collar comes off because you have made and created this boy that has a love for life and a larger than large passion for crashing, falling, jumping, running and playing any sport. God please help us and don't let us hold him back from the plans you have for him. Let us walk in faith that you will keep him safe but give us wisdom and guidance to his limits. I feel like this is going to be the biggest part of our journey.
Dr. Moss still has him on no recess or P.E. at school just to be safe that no excited kid runs him over or dares him to climb to the top of the playground and jump off. We will see Dr. Moss in July again to readdress his school activities before he heads off to 2nd grade. Other than that we will see the Oncologist in May for another blood draw for testing and a possible bone scan.
Today was another day spent on the phone calling on each one of Randy's medical bills. Just making sure that they know that we are working on making payments and getting some adjustments made to some of the bills. I think this may be a new part-time job for me. They have all been very nice, I suppose they want their money so for now as long as we are paying them they have to be nice. Some of them genuinely do seem nice though.
Rich will also leave tomorrow to head to Fontana, California to race and we were extremely blessed by a company called ESI Grips who supplies the Trek Factory Racing Team with the grips that go on their handlebars. They will be presenting Rich with a check for $2000.00 towards Randy's medical bills. We are beyond words of how grateful we are for their generosity.
The past couple of weeks have been good. Everyone is healthy and Randy is making progress with his collar off part of the day. He has started wearing his collar off while he is at school in the classroom. It goes on if he goes outside and shoots a few hoops while the kids are at morning or lunch recess. I have even been able to adjust to not being at lunch every day with him and he is making good choice when I am not there. (Dr. Moss told him that he was beyond lucky the first time but if he rips the screws out of his next he won't be as lucky. Ok, that kinda freaked us out too) Now, I did talk to the aides at school that are outside at morning recess and lunch. They know what he is and is not allowed to do. They even designated one end of the basketball area for him so some crazy kid doesn't knock him in the head with a flying basketball. I talked with the principal, his specials teachers and anyone else that I knew would see him through the day to make sure all eyes were watching. He is still wearing the collar in the car and when he is outside playing with the neighbor kids. Whenever he is inside the house or we are somewhere where he is a little mellow we take it off. I would say he has it off about 1/2 of the day along with while he sleeps. There have been a few times we have caught him holding his chin up with his hands because his neck is tired and so we will put the collar back on for a bit. He has also had several headaches and is complaining here and there about his neck being sore. Most of them time it is just those weak muscles working hard to get strong again but sometimes we have to remind him that he is just going too hard too fast and he needs to listen when we tell him to slow down or take it easy when he is playing. He just doesn't get that he doesn't have to be extreme at everything but no, it wouldn't be like him if he wasn't. It does teach us a good lesson though…If you are going to do something, don't just do it half way, give it all you've got. That definitely describes him that's for sure.
Well, a couple of weeks have gone by since I last wrote. A lot has been going on. Randy is doing good at school. He has had his collar off during class times but puts it back on still for any outside play. He has had a couple of small falls but bounced back up. Not that it didn't bring alarm or scare a few people, but that is good at least it shows they are watching out for him and paying attention. He has also over the past month been struggling a little at school in the classroom but especially in his special reading breakout group. There has been a bit of goofing around and just being disrespectful in group and class. Well with a little investigating and lots of questions, we have realized that due to the length of school that he missed he had fallen behind while the other kids in his group have gotten better. Come to find out and not to my surprise, there was a little bit of competition going on in his specials group (that is all boys) and basically Randy was feeling dumb and was trying to compensate that feeling by being funny and causing problems. We switched him out of that group and into a different one and now he is doing great. Just wish I would have figured it out sooner. As we head into our final 6 weeks of school, we are realizing that some extra tutoring over the summer is going to be needed if we want to be on target for 2nd grade. His teacher has graciously offered to do the tutoring with him. I just can't tell you what a blessing she has been for us this year. Truly an AMAZING teacher with a huge heart.
Well, we have also started some fundraising to bring in some additional money to get the medical bills paid down as much as we can. Over the past 2 weeks we have been collecting donated items for a fundraiser garage sale that we had this past Saturday. The garage sale was a huge success and we were blessed by so many donations that we will have another garage sale on Friday. We have also handed out hundreds of fliers for our Recycle for Randy fundraiser that will be held on the 27th of April. This fundraiser is a clothing and textile fundraiser. Basically we are collecting clothing or textile items before and on the day of the event. The items that are received will all be weighed and we will be paid per pound of all that was brought in. The company Clothingcycle will help host the event and will bring out a truck at the end of the day to weigh everything and will pay us at the end. All of the donated items will be resold, shipped to third world countries or shredded and recycled. It's a win in all areas. I will let you know how we do.
AMAZING!!!! Recycle for Randy was incredible! We brought in just under 5500lbs. We were only 2500lbs under their largest event and that event was held by a school. Words cannot even express how blessed and humbled we were by the outpouring of love that people have. God brought people from all areas out to support us. One man randomly found one of the fliers on the ground outside by a dumpster. He showed up with a minivan packed with bags full of clothing, from the front seat all the way to the back of the van. We didn't know him and will probably never see him again.
We also did our second garage sale the day before Recycle for Randy. Once again, God blessed us with a very profitable 2nd garage sale.
I was able to go to the bank a couple of days ago and was so excited to deposit into the Randy Weis Donation Fund account the money that we had earned for these events. I was even able to pay off one of the bill that was for all of his lab work while we were in the hospital. That was a good feeling. One down, but unfortunately many more to go.
As for Randy, well, he is in constant motion. He is getting more and more aggressive in his playing each day. His collar is off all the time except for outside play and still at recess and lunch at school. Randy has been participating and helping out at Jenna's softball practice and he has been jamming on his scooter and riding his mountain bike. He is shooting hoops, throwing the baseball/football and we have been taking a few dips in the pool at Papa and Grammies. Now with all of this activity we have also been having some sore neck muscles and a few headaches also. Those days/nights are a good indication that he pushed it a little too much and we need to back off our play intensity a little. He definitely doesn't like that.
We have our 3 month follow up with Dr. Onimoe the Oncologist on May 7th. They will draw blood and send it out for a complete workup to make sure that all of his counts are staying normal. We will also discuss when he should go for another full body bone scan. Unfortunately with the LCH (Langerhans cell histiocytosis) you cannot just do one test. You have to test the blood and bones separately. I have also been reading up on and learning more about LCH and am so thankful for how Randy's case has been. As extreme as his case was, there are other kids who have had it much worse. We have been praying for all children who are affected by this disease. If you would like to learn more about or support LCH and its research to find out what causes it, please checkout www.histio.org.
I will let you know how our appointment goes next week.