Now that we are home and have settled we thought we would tell you about Braxton and his story. People ask us how did we know that Braxton had a brain tumor. It all began in October 2013. Braxton was just like any other 1 & 1/2 year old boy, he was running around and learning new things. The first signs began at the start of October, Braxton started having restless night sleeps and he wasn’t able to walk properly, he would walk in to walls etc. We went to the doctors and they told us he had an ear infection and he was given antibiotics. To us this made sense as ear infections can make you feel off balanced. The second week he was still waking up a lot in his sleeps and his walking got worse. When he walked it was very slow and each movement its like he had to think and try real hard to move his legs and his legs would wobble as he took each step. We went back to the doctors and they referred us on to an ear and nose specialist however only available appointment was at the end of October so we had to wait. By the 3rd week he wasn’t walking, hardly eating, had trouble sleeping and he would pull his hair and scream in pain. On Monday the 28/10/13 we went back to the doctors (this time I asked for a certain doctor because he is one of the best in town), as we couldn’t wait till the end of the month to see the specialist as Braxton wasn’t himself and he was in pain. The doctor did a few observations and he told us Braxton needs a MRI and we had to go to Brisbane Marta to get it done. We asked what he thought was wrong with Braxton and he told us he could be wrong but he thinks Braxton has a brain tumor and he has a built up of fluid in the brain that was causing a lot of pressure. On Tuesday at 12pm Braxton was put under and had an MRI done. Two hours later we were told the Braxton had a brain tumor and there is built up of fluid in the brain. That night we had a pediatric neurosurgeon (a great one who we have much respect for and treats Braxton as if he is his own child) come to the Marta and explained everything to us. Braxton’s tumor is wrapped around his brain stem and it’s in operable. The tumor sits above his spinal cord entry and it’s blocking off the brain fluid from going down the spinal cord The reason he can’t walk is because there is no fluid going down his spinal cord and there is a lot of pressure built up in the brain. Braxton had twice amount of brain fluid in the brain then he normally should. The tumor is in a bad spot as it makes it difficult to get a biopsy as the tumor is around all the nerves that control the body, it tells you to move, smile, walk, see, swallow, laugh etc. He told us he wouldn’t try for a biopsy behind the brain, as there are to many high risks. The surgeon told us he wants to perform surgery asap. In the surgery he wants to create a new ventricle to allow the fluid to go down his spinal cord and this will also allow the fluid to circulate properly around the brain. He also wants to put in a VP Shunt on top of his brain on the right side, which will allow the surgeon to use if needed if the fluid builds up again. Since he wanted to put the VP shunt up the top of the brain, he told us if he can see the tumor that way he will try for a biopsy. The next day Braxton had surgery at the Brisbane Royal Childrens hospital. Surgery went well, a new ventricle was created and the VP shunt was put in, however the tumor couldn’t be seen via the top so no biopsy was taken. That night we had the neurosurgeon and oncologist come by and they told us their thoughts on the tumor. They told us they think it’s a low grade Tectal Plate Glioma. These tumors normally don’t grow and now and then they might grow. They can’t say how long Braxton has had it for and also cant predict what it’s going to do. But if it’s what they think it is, Braxton will need regular MRI’s to check the status of it. Braxton was in hospital for over two weeks. Before he was able to go home, he had to have an MRI to make sure the ventricle hadn’t collapsed as this can happen and to also check that the build up of fluid was going down. It was all good and Braxton was allowed to go home and to come back in 5 weeks for another MRI. A week before Christmas Braxton had another MRI done. It came back all good! The tumor hadn’t grown, there wasn’t any fluid build up and the ventricle still looked great. In March 2014 Braxton had another MRI done. In the scans it showed the tumor hadn’t grown however there was a cyst growing off the VP Shunt. We were told they have never seen this happen before and that Braxton needed surgery. They wanted to make incisions in the cyst as this will allow the fluid to escape the cyst and hopefully it will go down and stay like that. They would also remove the VP Shunt so it wouldn’t happen again and the VP Shunt wasn’t needed no more. In May 2014 Braxton had another MRI done as they wanted to see how much the cyst had changed. From March to May the cyst doubled in size. On Tuesday 3/06/14 Braxton had surgery and they made 2 incisions, which allowed for the fluid to drain from the cyst and they also removed the VP Shunt. When they removed the shunt they also checked if the tumor could be seen from the top for them to get a biopsy and unfortunately it couldn’t be seen therefore no biopsy was taken. Braxton was in hospital for 2 days and then sent home. The following Monday before Braxton went to bed we noticed one of his dissolvable stiches had come undone. The next morning we noticed fluid was coming out of the wound. We called the team in Brisbane hospital and they told us to go to our local hospital. We went to our local hospital, who then called our teams in Brisbane and they were advised to apply compression bandage on Braxton’s forehead. We were sent home after that however in the middle of the night the fluid had started coming thru his bandage and I applied more bandage on him. We went to the doctors that morning and they advised us we need to go back to Brisbane as Braxton may catch an infection. We travelled down to Brisbane and Braxton had surgery 10pm that night. They did a lumbar puncture to find out if Braxton had an infection and to re-stitch his wound with permanent stitches. The next day we found out Braxton had a brain infection and we’d have to wait a few more days to find out what it was. Braxton had caught two brain infections meningitis and encephalitis. For the next two weeks Braxton was connected to antibiotics 3 times a day and after that he was able to go home. However testing was done and he needed more antibiotics so they looked in an antibiotic that he stays connected to for 24 hours and he wears it in a duffle bag. They managed to find out that his antibiotic’s he needed did come in a 24-hour bottle. Braxton had surgery so they could put in a central line, which will allow for him to have the 24 hour antibiotic to be connected to him. Since Braxton was able to have the 24 hour antibiotic we were allowed to stay at families house in Brisbane and we had a nurse come to us each day to connect a new bottle. This continued for another 2 weeks and then Braxton was able to get sent home and have more antibiotics orally and to get blood test done. Braxton had another MRI done in July 2014 so see if the cyst was smaller and to check the tumor. The results came back that the cyst had gone down and the tumor hadn’t grown. We were told since the tumor hadn’t grown over the past 10 months that we can go back in January 2015 for another MRI instead of in October. We were so happy that finally we had luck on our side. A month later on the 31st Braxton had a 2-hour half focal seizure, which means that only his right side was having the seizure. We got an ambulance to our local hospital at 6pm and because of Braxton’s history we got helicoptered to the Brisbane Royal Childrens Hospital at 1am. We saw the team that morning and since it was a half focal seizure on the right side, something on the left side of the brain had to trigger it. They told us it can’t be the tumor doing it as it’s more on the right side of the brain. On the 3rd September, Braxton had an MRI done. They told us that the tumor hadn’t grown and they didn’t know what caused the seizure. Braxton had croup with high temps before the seizure so they were thinking maybe a high temp triggered it but they don’t know why it was only a half focal seaizure. So Braxton got prescribed on Kepra, which will hopefully hold off the seizures. We were relieved to hear the tumor didn’t cause it and the tumor hadn’t grown. However 8pm that night, we had one of our specialist come to us after just checking his MRI. He told us that Braxton’s tumor had grown and it has been growing from the very beginning. What had been happening was that the other teams would look at the current MRI scans and the ones done before to compare. What should have been done is get the current scan and put it against the very first scan. We saw the current one September 2014 and the very first one that was taken back in Oct 2013 and we noticed a huge growth. We don’t know how this was missed. The next day we spoke to the teams to talk about what has to be done for Braxton. We had been told the whole time that they didn’t want to perform biopsy from behind the brain, as it’s very risky. The option was brought up they can do a biopsy via behind the brain but there are many risks or they can firstly go thru the top of the brain again and hopefully they can see the tumor to get a biopsy or they can guess the chemo. A week later Braxton had another lumbar puncture done and they discussed with us about getting a biopsy via the top of the brain. Braxton was still unwell so surgery wouldn’t happen until he was better. The moment when we got home after been told Braxton’s tumor had been growing we sent Braxton’s records and MRI scans away to get second opinions. Many came back to us saying that the tumor was in operable and that they’d guess the chemo. However we got a phone call from Dr Teo’s office wanting us to come down for a consultation. We’ve made mention on previous posts about how our consultation went with Dr Teo and how surgery went for Braxton. Unfortunately this has been a long journey for Braxton and it’s only the beginning. There have been many stuff ups that have happened, however we’re forever grateful that the tumor growth was found otherwise we wouldn’t be here fighting back at this tumor, instead we’d be waiting for Braxton’s to get his January MRI to be done. We believe Braxton had the seizure back in August, as his body was telling us something is wrong. Knowing that Braxton has been thru so much and he surprises us with his recovery, we know that anything that is thrown his way he can beat it. He is a little fighter!!!
Posted on: Wed, 21 Jan 2015 06:24:18 +0000
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