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UPDATE: Mac has been diagnosed by a Rheumatologist with HyperMobility Joint Syndrome. He will need genetic testing to find out what the cause is (EDS is a possibility). He will also need PT evaluation and then weekly PT at Vanderbilt to improve his mobility and quality of life. He also needs an echocardiogram to make sure there are no heart defects that come with this. He will continue to see Pain Management until we can get this pain under control. All help is greatly appreciated! He will still do scans to make sure no cancer every 4 months as well.
Mac is a 4 year old boy who was diagnosed with Embryonal Rhadomyosarcoma on August 17th, 2012 at age 18 months. He has been in remission since March 8, 2013! Mac has two genetic diseases that increase his risk for cancer: Beckwith-Wiedemann Syndrome and Li-Fraumeni Syndrome. Mac has been having issues as we potty train. He tells us that he cannot 'feel' the sensation of using the bathroom nor tell when he has to go. He has also been complaining of some lower back pain in the past few weeks, combined with a low grade fever that persists even though he just got off of antibiotics. This is very concerning for his Oncologist. They called us tonight to let us know that Mac will need additional tests, not just his MRI and chest X-ray on May 28th. They are setting him up to see a Urologist but they feel they need scans on his kidneys, bladder, and colon as soon as possible to ensure it is not cancer. Unfortunately, not all tests could be done on the 28th. Mac will need bloodwork, which will be on June 1st as well as a urinalysis. They would also like to do a PET scan of his entire body to put all of our minds at ease! The PET scan will take place on May 29th at Vanderbilt. We will have all results on June 1st when we go to see Oncology in clinic! The good news about his PET scan is that he does well with it and they are going to try and do it with mild sedation and not putting him to sleep! We do not have an appointment with Urology yet but they assured us it would be soon. Our oldest son, Mike, has surgery scheduled at Vandy on June 4th to have his tonsils removed by Mac's ENT surgeon! The appointments on the 1st and 29th are ones we did not expect and my husband has had his hours cut, which means it puts a big strain on us financially. We are asking for financial help for gas expenses for these trips. We are so thankful for the continued support and mostly, the prayers! We know this amazing boy will come out on top, as God is by his side! <3
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