...I'm happy to say, but it was a harrowing experience! To start from the beginning, Jaydon has always has a bump on the side of neck since he was born. When he was small I'd have the Doctor check it at every appointment and the doc would always say it was nothing. I got to the point of forgetting all about until our recent trip home. Several relatives pointed it out and with the new attention I had for it, it seemed to be getting bigger. So in Jan when we got back to Doha I asked the doc. Again, he said it was nothing but decided to order an ultrasound just to be sure. At the end of Jan we got the ultrasound done. What was supposed to be 15 minutes for the report results turned into an hour and a half with the nurses giving me various excuses as to why it was taking so long and finally just giving up and telling me they'd come find me when it was ready. I finally got the report and started reading it on my way back pediatrics to find words like - lymphoma, metastasis, thyroid carcinoma and lots of other scary medical terms that you never want to see on a report.
My stomach in my throat I headed over to the pediatrician to understand what he had to say. (Fortunately, our friends the Fenns had arrived to get some shots for their son so I was able to leave Jaydon with them while speaking to the doctor.) He was particularly unhelpful and basically told me that we needed to do blood tests, x-rays, cat scans and a biopsy to determine what the issue was. He asked me what I knew about Lymphoma and I mentioned that we had put our dog down from it less then a month ago - he made some absurd comment about how "that's not what we do with kids" - and that was basically the end of his bed side manner.
Overwhelmed and in complete shock I went to see our company doctor. He had just newly arrived in Doha so was being very careful about what advice to give me but was very helpful in explaining what this could be and was very positive that it was likely nothing. He convinced me to go ahead and get the blood tests and x-ray since at this point the more information we had the better.
That night we got online and started researching cancer treatment centers and quickly landed on MD Anderson. It was in Houston and very well respected. We sent them an e-mail and within 3 hours had a phone call back. (Which was a huge relief given the kind of medical experiences we're used to here in Doha) They have a whole department specializing in overseas patients. The lady who called us was from Qatar and understood the medical system here. She mentioned that her past 2 cases from Hamad (the public hospital here) had been misdiagnosed. She agreed to get Jaydon's case looked at by a specialist as soon as possible.
The next day the tests results were in - everything was negative so the pediatrician basically told me that he couldn't do anything further to help us get to a conclusion. I needed to either go to Hamad or overseas if I wanted certainty as to what we were dealing with. After many sleepless nights and several discussions with the company doctor and my brother (and his girlfriend) who are in medical school we decided to get Jaydon back to Houston. We don't have a lot of confidence in the medical system here and if the worst came back from the tests we knew we'd go to back to the US for treatment so better just to start everything off there to begin with.
The MD Anderson doctor agreed to see us as soon as we could make it to Houston, we considered canceling Jaydon's birthday but once we made the decision to go to Houston everything slowed down. Our contact at MD Anderson went on vacation, her stand-in took over a week to get the insurance cleared and then finally we had an appointment for Feb 16. It was a tough decision to stay home and send Steve off with Jaydon but since I'm still breast feeding Tylor it was the right one to make (Tylor certainly didn't need an unnecessary trip to Houston). I loaded the boys on the airplane and they headed off for a boys 'vacation' (which is what we told people who didn't know the whole story). On the plane Steve and Jaydon sat next to a young girl who was on spring break going to visit her sister and take her to Disney world. Coincidentally her sister happened to be at MD Anderson - getting treated for Lymphoma...
Jaydon was a great traveler and made it to Houston with no issues (unlike our last trip where he was sick with a fever). They met with the Lymphoma specialist and he gave Jaydon a thorough examination and said it was very unlikely that anything was wrong. This was a great relief but at the same time, in a weird way, a disappointment that we had done all this planning and worrying and traveling for absolutely nothing. The doctor had no interest in doing a biopsy and told Steve to bring Jaydon back for another exam in a week before they went back to Doha (apparently Lymphoma is very aggressive and he would see a difference in Jaydon's condition if indeed he had the disease). That was on Thursday and that weekend was President's weekend so everything was closed. Steve decided to take a road trip over to Louisiana while they waited for the weekend to pass.
On Tuesday when everything was open again Steve scheduled another ultrasound just to confirm what they had seen in Doha. Wed they did the ultrasound and then all of sudden we were back at square 1. This time the area they focused on was the Thyroid. This was mentioned on the first test but apparently not in a way that made the doctors take much notice. This time they immediately contacted the endocrine specialist. The next day Jaydon went to see her and she decided that a biopsy was necessary. So at this point I was rescheduling the flight back so Jaydon could stay a few more days for the biopsy that we thought we had sent them there for to begin with. Worrying, sleepless nights understanding every bit of information in the Internet started all over again.
He had the biopsy, they tested his Thyroid and since they were there his Lymph nodes too (which the original doctor maintained wasn't necessary). As suspected by everyone involved, everything came back negative. He has larger then normal Lymph nodes and nodules in his Thyroid that ended up being nothing more than some misplaced Thymus tissue. With the good news Jaydon and Steve headed back to Doha. It was quite an experience but fortunately it was all a big false alarm...
My stomach in my throat I headed over to the pediatrician to understand what he had to say. (Fortunately, our friends the Fenns had arrived to get some shots for their son so I was able to leave Jaydon with them while speaking to the doctor.) He was particularly unhelpful and basically told me that we needed to do blood tests, x-rays, cat scans and a biopsy to determine what the issue was. He asked me what I knew about Lymphoma and I mentioned that we had put our dog down from it less then a month ago - he made some absurd comment about how "that's not what we do with kids" - and that was basically the end of his bed side manner.
Overwhelmed and in complete shock I went to see our company doctor. He had just newly arrived in Doha so was being very careful about what advice to give me but was very helpful in explaining what this could be and was very positive that it was likely nothing. He convinced me to go ahead and get the blood tests and x-ray since at this point the more information we had the better.
That night we got online and started researching cancer treatment centers and quickly landed on MD Anderson. It was in Houston and very well respected. We sent them an e-mail and within 3 hours had a phone call back. (Which was a huge relief given the kind of medical experiences we're used to here in Doha) They have a whole department specializing in overseas patients. The lady who called us was from Qatar and understood the medical system here. She mentioned that her past 2 cases from Hamad (the public hospital here) had been misdiagnosed. She agreed to get Jaydon's case looked at by a specialist as soon as possible.
The next day the tests results were in - everything was negative so the pediatrician basically told me that he couldn't do anything further to help us get to a conclusion. I needed to either go to Hamad or overseas if I wanted certainty as to what we were dealing with. After many sleepless nights and several discussions with the company doctor and my brother (and his girlfriend) who are in medical school we decided to get Jaydon back to Houston. We don't have a lot of confidence in the medical system here and if the worst came back from the tests we knew we'd go to back to the US for treatment so better just to start everything off there to begin with.
The MD Anderson doctor agreed to see us as soon as we could make it to Houston, we considered canceling Jaydon's birthday but once we made the decision to go to Houston everything slowed down. Our contact at MD Anderson went on vacation, her stand-in took over a week to get the insurance cleared and then finally we had an appointment for Feb 16. It was a tough decision to stay home and send Steve off with Jaydon but since I'm still breast feeding Tylor it was the right one to make (Tylor certainly didn't need an unnecessary trip to Houston). I loaded the boys on the airplane and they headed off for a boys 'vacation' (which is what we told people who didn't know the whole story). On the plane Steve and Jaydon sat next to a young girl who was on spring break going to visit her sister and take her to Disney world. Coincidentally her sister happened to be at MD Anderson - getting treated for Lymphoma...
Jaydon was a great traveler and made it to Houston with no issues (unlike our last trip where he was sick with a fever). They met with the Lymphoma specialist and he gave Jaydon a thorough examination and said it was very unlikely that anything was wrong. This was a great relief but at the same time, in a weird way, a disappointment that we had done all this planning and worrying and traveling for absolutely nothing. The doctor had no interest in doing a biopsy and told Steve to bring Jaydon back for another exam in a week before they went back to Doha (apparently Lymphoma is very aggressive and he would see a difference in Jaydon's condition if indeed he had the disease). That was on Thursday and that weekend was President's weekend so everything was closed. Steve decided to take a road trip over to Louisiana while they waited for the weekend to pass.
On Tuesday when everything was open again Steve scheduled another ultrasound just to confirm what they had seen in Doha. Wed they did the ultrasound and then all of sudden we were back at square 1. This time the area they focused on was the Thyroid. This was mentioned on the first test but apparently not in a way that made the doctors take much notice. This time they immediately contacted the endocrine specialist. The next day Jaydon went to see her and she decided that a biopsy was necessary. So at this point I was rescheduling the flight back so Jaydon could stay a few more days for the biopsy that we thought we had sent them there for to begin with. Worrying, sleepless nights understanding every bit of information in the Internet started all over again.
He had the biopsy, they tested his Thyroid and since they were there his Lymph nodes too (which the original doctor maintained wasn't necessary). As suspected by everyone involved, everything came back negative. He has larger then normal Lymph nodes and nodules in his Thyroid that ended up being nothing more than some misplaced Thymus tissue. With the good news Jaydon and Steve headed back to Doha. It was quite an experience but fortunately it was all a big false alarm...
2 comments:
SOOOO glad that everything is ok! I'm sure that was terrifying for you guys.
What a HUGE relief to find out everything was okay. How SCARY! I can't even imagine dealing with that, not to mention being there where you feel you can't get any trusted medical care. So glad it was all okay.
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