The backstory (written 11-8-12)
Shad has been complaining of foot pain since the beginning of October. It would come and go and some moments would be worse than others. He didn't like to walk, but we could still convince him to do it sometimes. I took him to the Dr. and she said he was fine. Granted he acted fine by the time we finally were seen. I took him home thinking that was weird, but not too worried. A few days later he was still really whiny and crying about his foot hurting, so I took him back to the Dr. She said that it looked like maybe his foot was a little swollen so she ordered some X-rays of his foot, ankle and tib fib. A few days later she called saying there was an abnormality and that she wanted us to see an orthopedist for further investigation. We scheduled the appointment through Balboa (the military hospital) and came in the next week. The orthopedist ordered an X-ray of his knee. Focused in on the abnormal area and declared everything within an ok ("normal") range. I left that appointment slightly frustrated and discouraged. I waited a bit to see what would happen with his pain etc. Not too long after that he started digressing. He was weak. He was walking a bit hunched over kind of like an old man. He just wanted to lay on the couch all day. He looked forward to nap time and would nap everyday for several hours while still sleeping at night as well. On Tuesday at preschool he complained of leg pain and weakness. I picked him up early after the teacher called me saying he didn't seem like himself. From that day forward all he wanted to do was sit/lay on the couch. He had some constipation issues and then on Thursday he started complaining of pain when peeing.
I took him to the doctor on Friday, and they did a urine test. We had to see a different doctor because our regular pediatrician was not there that day. She really seemed like she couldn't care less and told us just to go back to the orthopedist. I tried to explain that I didn't think it was really a leg or foot issue, but that the foot pain was a side effect of something more serious. She really didn't seem like she was listening, and sent us home. From the minute I left I was kicking myself for not making her listen to me. I was worried something was wrong and am still mad that I didn't trust my instincts more. We spent the weekend witha pretty miserable boy, but he did perk up a bit for the family pics Saturday night. I will forever be grateful that we had those taken.
Sunday at church we had stake conference. Shad spent the whole 2 hours sitting quietly being held by either Trevor or I. It was so not like him and I knew that something else had to be going on. I decided then and there that I was going to the doctor on Monday and I was going to demand that something else be done. I would make them understand the seriousness of the situation.
I got the appointment scheduled and my mom went with me. By this point Shad was barely eating or drinking. When the Dr. (Shad's regular pediatrician) came in and started asking questions I immediately burst into tears. The stress, worry, and frustration were all getting to me not to mention some pretty crazy side effects from a medication I was taking. I started telling the doctor what had been going on through my sobs, and looked over to see my mom crying as well. The Dr. finally seemed to take me somewhat seriously, and ordered some blood work to do immediately. She decided she also wanted an abdominal ct and possibly an MRI of his back. She would work on getting those scheduled. We went downstairs and got the blood work done. Shad was of course not too enthused but he did really well considering. Tuesday and Wednesday night he barely slept. He also gave up almost all together on eating and drinking.
The Emergency Room (written 11-8-12)
This morning I knew that he was really not well and I was either going to get some more immediate answers from his Dr. or take him to the ER. I was on the doorstep of the Drs office the minute they opened. Of course the Dr. didn't get in for another hour so I decided just to take him to the ER. We got there about 845 and luckily seemed to barely beat the rush and got in pretty quickly. The first Dr. (student/resident/ |
| after the ultrasound, he got lots of stickers this day |
They said he still had a full bladder so they put in a foley catheter. He ended up going to get an MRI of his abdomen at that point. By then I knew there was something wrong because if they weren't worried about something they wouldn't be doing all the same type of tests. He was amazing during the MRI, they didn't have to sedate him and he held super still. The machine of course broke down halfway through so they had to wait for it to reboot. That took a bit and he started getting restless. Luckily they had let Trevor go in with him from the beginning, and they came and got me when the machine broke to help keep him relaxed. They said they would have the images down within the hour. We waited and they started telling us things that let us know it was pretty serious. For example that we were being transferred to Balboa via ambulance. Sign this, do this.
A Diagnosis (written 11-8-12)
The doctor came in and told us he wanted to talk somewhere more private. He took us one at a time. As soon as he said that I started tearing up. I knew that it was bad. Trevor went first and came back looking ok, but a little sad. I was next. He told me there was a mass and based on his blood levels they were pretty sure it was cancer. he gave a name, but I can't remember it. The ambulance came soon after that and Shad and I were on our way. Trevor drove one of the cars over. So, now we wait. 
Balboa (11-8-12)
They have come in and tested his reflexes and done his vitals etc. several times. Casey and Kevin came for a bit and helped with a blessing/brightened the mood/picked up the second car. After that shad went to sleep, trev left and I sat here with my thoughts. I have had a fear/feeling from almost the beginning this was cancer related. I kinda wish I had pushed harder sooner, but at the same time try to convince myself it is okay. We called our parents and told them the basics/we will know more tomorrow, but until we know more we will wait. |
| watching kung fu panda 2 on his awesome touch screen tv |
Friday 5:30 am
The nurse came in and took Shad to another room to draw some blood. They didn't want to do it in his room because they want that to be his safe place where he won't have any "ouchies". He was not happy about getting woken up, being moved, and then having them hold him down while he got pricked. Once the needle was in he calmed down some and wanted to see. He watched the blood come out and asked some questions about why they were taking it. The nurse and I brought him back to bed and he was able to fall back to sleep pretty easily.
8:00 am
The doctor just came in and gave me a bit more information. They showed that there is a mass in his abdomen. It is down near his bladder and looks like it has possibly spread to some other organs like the liver and possibly more. It is pushing on his spinal column which probably explains the leg/foot pain. They are having a meeting of the minds as we speak and are deciding on a plan of action. They will most likely sedate him and do more imaging to get the clearest pictures possible. They will be doing more than before to try to see exactly what is going on, and where the growth is. After that they will meet again, and then most likely do surgery to take a piece of the mass and test it to figure out exactly what it is. Depending how long pathology takes we will have more answers tonight or tomorrow. Once they know exactly what is going on they will discuss/decide the plan of action.
The rest of the story (for now) written 11-11-12
They ended up doing the second MRI here at Balboa. We went up with Shad, they started to get him prepped and then they gave him the medicine to sedate him. It was crazy how fast he fell asleep. We gave him a kiss and went down to the room to wait. They said that it would be at least 2 hours before they were done. Casey came and brought some lunch, and she, Trevor and I just hung out and talked while we waited. After a little while the pediatric neurosurgeon came in and talked to us. He let us know that he had seen a "peek" of the images, and that he was going to need to do emergency surgery. There was a mass in Shad's back that pretty much destroyed the bone of the L4. The muscle was pretty much the only thing holding his back straight in one part. They mass was also compressing his spinal cord, and was causing a loss of sensation in the feet. He was pretty somber, and told us he couldn't promise that Shad would regain full function in his feet. He told us about the surgery he was going to perform, and how it would be done. He also let us know that because of the damage the mass had done to the spine, Shad would have to have rods inserted into his back (similar to a scoliosis patient), but that wouldn't be done until a later time. As you can guess we were very concerned, but glad they had found it at just the right time to still be able to offer some hope. The surgeon was great, and told us about his 4 kids at home. It helped me to trust him with my child knowing that he was a father himself. He also said that he was praying for the best outcome, which helped me to have more faith. There were no students who would be present during the surgery. He was going to be the man in charge. After that shocking news we waited some more. At about 2:30 they called letting us know that they had started the procedure. They were back in the room by about 5:00. Shad pulled through it really well, but did have some scary moments. The tumor was really bloody, and he ended up losing almost all of his blood volume. Thankfully they were of course prepared and were able to transfuse him, he ended up fine.
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| after his surgery |
We are so grateful that he is wiggling his toes, and is also able to move his legs. He is not allowed to get up and walk around because of the surgery on his back, and his back being weak right now. They are hoping they will be able to get a brace that he can use until the rod surgery. During the removal they were able to get some samples for pathology to look at to diagnose exactly what kind of cancer it is. There are 3 different types it could be and all are treated a little differently. As soon as we know what kind of cancer it is they will outline a treatment plan, and we will know more. Until then we wait.
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| feeling good enough to play some games today |
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| showing the night nurse how to play a game on the ipad |
Shad is doing great, and being a real trooper. He has loved all of the gifts that he has received, and the pictures from friends at church. We are so grateful to our family, our ward family, and our friends for their combined efforts in the special fast for Shad today. We could feel our spirits being lifted by your faith and prayers. Thank you also for all the offers of help, we will be taking each of you up on them in one way or another, but it may not be right away. I will try to update this blog as much as I can with new information as it comes in. Thank you so much again. We love and appreciate all of you.
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| enjoying the ipad mini he got (from someone who loves him, I will keep them anonymous on here) |
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