I know we haven't posted an update in a few days and I apologize. I'm happy to say Mason is doing better. He is breathing on his own and has been for a few days. He's able to talk a little and drink a little. The doctors are still monitoring his endocrine system, which we expected. If you know Jon Mason though, you know he is in good spirits. Jon Mason was moved from the PICU today to a room on the Critical Care floor (this is good news). They will be monitoring him for a few more weeks in an attempt to get his endocrine system stabilized. He will have another procedure in the coming week or two to remove the packing from his previous surgery.
On behalf of the family, I must say we cannot express our gratitude enough for everyone's support! We have been overwhelmed with joy to know just how many people love and care for our sweet Jon Mason. So thank you, from the bottom of our hearts for your prayers, thoughts, well wishes and donations. Jon Mason still has a long road ahead of him, but we are sure with his strength, our God watching over him and the support of this amazing community that he will make a full recovery!! I hope you all have a blessed week. Please continue to share our updates with those who are concerned. We will update as often as we can. Also, the GoFundMe page for Jon Mason has raised over $13,000 already!! These funds will help the family tremendously with the costs, but please don't hesitate to share the link. Although it seems like a lot of money, this is only a portion of what the expenses will be at the end of his treatment.
Thank you all again so very much for your support!
- Katie Millwood
UPDATE: I apologize for the delay of update. Today has been pretty hectic. I just wanted to let everyone know Mason is doing well. He went in for an MRI this morning to check the status of the fluid and pressure. The MRI results were that the procedure yesterday was successful. Mason is having a little swelling, which was expected due to the change in draining. Overall, the prognosis is looking better. They released him from the hospital for this weekend. He will have to remain near the hospital in case of emergency. Thanks to Alabama Power, they were able to stay in an apartment across the street from the UAB Children's Hospital. Sunday he will return to the hospital for monitoring until the procedure on Friday. Needless to say, they thought a break from the hospital bed would do him good. It'll give Nicole, Jonathan and Mason a little breathing room for a couple of days. This by no means is a permanent release, but just a chance for him to have some normalcy. Again, thank you to all of you who are praying, sharing, and donating!! We appreciate everyone's help in Mason's journey. What a relief it was to get some good news today. Let's keep the prayers coming!! There will be a benefit tomorrow at Daphne Middle School from 8am-7pm. The Free Play benefit will be put on by Knockerball Bay, LLC. All proceeds will go to Jon Mason. They will also be collecting donations! Please come out and join us for a little fun! We hope to see you all there! #PrayForMason #TeamMason #MayTheFaithBeWithYou
UPDATE: Jon Mason is in great spirits and has kept a smile on that cute face we all love so very much! Today, Mason will undergo surgery. The surgeons will be removing some parts of the tumor. There are areas of the tumor that have calcified, so these parts of it will not be removed today. Even though they won't be able to remove the entire tumor, they are hopefully to be able to get a better idea of the damage caused, if any. After this procedure Mason will begin radiation to treat the parts of the tumor that are calcified. Thank you all for the tremendous support you have shown our family. Please continue to pray, share and donate if you can. The procedure today should begin around 7 am and will last most of the day. #PrayForMason
UPDATE: The drain tube for the fluid is still going. Mason will be going in for another MRI this morning. Even though they are draining the fluid, there is more building and causing pressure. Let's get our prayer warriors together!! #TeamMason #PrayForMason #MayTheFaithBeWithYou
UPDATE: Our sweet Mason is in recovery from the first surgery. The doctors said the pressure was "through the roof". They were happy they went ahead with the procedure. He is still in recovery and the draining is continuing. Thank you all for your prayers!! #TeamMason
UPDATE ON MASON! Tonight they decided to put a drainage tube in to try and shrink/drain the tumor to prepare for extraction surgery sometime in the future. Mason has been very sick tonight and his vision is getting worse so depending on how things go tonight he could either get the drain tube surgery later tonight or in the morning. Please pray for Mason, the surgeons, & family.
UPDATE on Jon Mason: He is better! He is now back at the Ronald McDonald House. They released them last night. He is still be monitored for his endocrine system. They also tested his thyroid and he will be starting new medication for that. He is walking better and talking more. They will do another procedure next Friday to remove the packing from the last surgery.
UPDATE: Mason is out of surgery They could not do the removal surgery The pressure on the left side was too large they drilled a bigger hole in skull and cut a passage way to the left ventricle for drainage The drain is place between the scalp and skull so there will be major swelling They did look at the tumor and have decided that it will need to be done with several more surgeons invoked The removal surgery is scheduled for next Friday at the big UAB hospital They have the equipment and the two more surgeons that they need to do this. Thank you all for your prayers, shares, and donations! We are all working diligently to help as much as possible. Without you all we would never have been able to manage! Thank you again so much!
Good morning all, I just wanted to take a minute and thank each and every one of you for your donations! On behalf of the family, we never imagined so many people would want to help! We appreciate all of your donations. It's not just about the amount, but also the time we know it takes for you all to come in and donate. So thank you all for your support! I will continue to update you as I learn more information. Jon Mason went back for surgery a short while ago. Hope you all have a blessed day! Thanks again for all of your help. #PrayForMason #TeamMason #MayTheFaithBeWithYou
Hey everyone!! We want to take a moment and thank everyone for all you've done to help the Lim family and Jon Mason. We hope you all had a blessed Thanksgiving and are having a great holiday season. Jon Mason went back to Birmingham today for some follow up appointments that were already scheduled. They admitted him due to concern about inflammation. We do not have details at this time, but would like to ask that our prayer warriors come together please. Could you all say a prayer for Jon Mason that they are able to get this under control? Again, thank you all for everything you've done! I promise to update as soon as we know more. Let's get this prayer chain going again for our community hero!! -Katie Millwood
From Nicole: Update on Jon Mason: First I would like to thank everyone for the continued prayers and support you all have so graciously given our family. We truly appreciate it! I would like to fill you all in on what has happened since I last posted an update on October 21st at UAB, his 4th and latest surgery, removing the nasal packing. The surgery went well and after a long stay in recovery we were sent back to RMH (Ronald McDonald House). He had an upset stomach that Saturday and Sunday, and late Sunday night he started swelling all over his body. In the early hours on Monday morning we took him to the ER at Children's and he was readmitted. Our stay this time at Childrens revealed the blood work levels on his liver came back elevated and an ultrasound was order. We then found out his liver was enlarged. Researching we now know 50% of all Craniopharyngioma patients with hypopituitarism have some liver disease/dysfunction NAFLD nonalcoholic fatty liver disease. Unfortunately Mason has Panhypopituitarism, which means his pituitary gland has zero function, and diabetes insipidus, which raises his risk. His appointment to see the GI liver specialist will be on December 2nd. On one of our regular check ups with the Neurosurgeons they were very concerned about his sub galeal shunt. If the pockets of spinal fluid don't dissipate by our next appointment on December 1st then they are considering another surgery and putting in a permanent shunt to the belly. Also Mason saw a pulmonary Doctor this week. She said Mason has sleep apnea and this is very common in patients with a history of Craniopharyngioma tumor removal. He needs an overnight sleep study so he can then be placed on a CPAP. The next available scheduled appointment isn't until March. Unfortunately we can't wait that long. Carbon Dioxide is slowly building in his chest so he has orders to sleep sitting straight up. I'm calling everyday to see if they have any cancelations so we can get in sooner. Please keep the prayers coming, we are in much need! On a better note we were released to come home this weekend! He was so excited to be back home in Daphne and be back in his room. We will have to return to Birmingham the end of November but at least we can all be together at home for Thanksgiving! Please pray his health continues to be stable enough to stay home during this holiday time. Again thank you for your caring, love, prayers, and support for my sweet son Jon Mason!
Hey everyone, I apologize for the delay in an update. I'm sure most of you saw Nicole's (Jon Mason's mom) post on Friday. Jon Mason is doing better every day. Fortunately, the surgery Friday went well. The surgeons were able to remove the packing without complication. Although he is still being monitored for his endocrine system, he has regained his appetite. We cannot possibly thank you all enough for the help and support. The amount of support from our community and others has been tremendous. We are definitely humbled by everyone's kindness. Jon Mason brings so much joy to our family and it is such a blessing to see what a joy he truly is to everyone he has come into contact with. As you all know by following our posts, there is still a lot to come for Jon Mason's future throughout this journey. He will continue his battle to beat this tumor, but he has already come so far. We could not be more proud of him for his strength throughout it all. I'm not sure how or if many of you have met him, but if you have you understand the fighter inside him. Again, thank you all for everything you've done from praying, donating, sharing our posts, all the way down to simply thinking about Jon Mason. We will keep you posted as often as we get updates. Just remember, even though this week has been successful he has a long road ahead with the endocrine system and other things. So let's all please continue to pray, share and keep him in our thoughts. Also, there are still many events to come for fundraising to help the wonderful parents of Jon Mason with his medical expenses, prescriptions, gas for traveling for the family and many more expenses. So please if you all see a post about an event, be sure to attend if possible and share so we can raise as much money as possible. Even when Jon Mason has completed his treatments and surgeries, the family will still have prescriptions and follow up visits to pay for, so the more the merrier! Thanks to all of you, Katie Millwood
We have another update tonight. After speaking with Jonathan (Jon Mason's dad), we found out Mason is doing much better. He is able to walk a little now. His eyes are better and he's able to talk more. This sweet child continues to amaze me. His strength and motivation is something we should all admire!! Let's keep lifting him up in our prayers. Everyone, please continue to share. We have raised $13,400 through his GoFundMe Page alone! Thank you all for your help and support. We couldn't thank you enough!!
Yes ma'am. He's is still in surgery, but they are closing him up now! They were able to removed almost all of the tumor!! They are going to allow Mason to heal up and in 3 months they will start a targeted radiation to remove the remaining parts of the tumor. Let's continue praying and doing everything we can for Jon Mason!! Thank you all for your help and prayers! #PrayForMason #TeamMason #MayTheFaithBeWithYou
Good morning all! We have some great news! Jon Mason's GoFundMe account has reached over $12,000!! We just wanted to thank everyone for your donations and prayers! There is a bit more good news as well. Jon Mason has finally gotten accepted to recieve help from the Ronald McDonald House!! They will be checking in this afternoon at 4 pm. I will post the address once I get it for anyone wanting to send cards, packages or for anyone that wants to visit! Mason spent the weekend in an apartment with his parents. He has been feeling much better and is still in great spirits! Let's keep this support up! Even though we have received some good news, doesn't mean this over just yet. There will be one more major surgery at least and the the radiation. This is in hopes the surgery goes as well as they plan! Thanks again for everyone's support and prayers! #PrayForMason #TeamMason #MayTheFaithBeWithYou