Lauren Browne

***Updated!!!***

::Lauren’s Story so far::

Lauren was born at Aiken Regional Medical Center in Aiken, SC on February 27th, 2008. She had some difficulty breathing and they took her to the nursery very quickly. The following morning they brought her to us and our doctor came in and told us he wanted to transfer her to the Neonatal Intensive Care Unit (NICU) at the Medical College of Georgia (MCG) because she had a cleft pallet. Once she got there they found a “mass” blocking her airway and upon further investigation told us the mass was a rare cranial teratoma tumor. They did a biopsy which freed up her airway and came back benign (negative) for cancer. Duke University later confirmed this.

After a few days they where able to take her off the feeding tube, she ripped out her breathing tube on her own after they did the biopsy. 12 days later we where able to take her home from the NICU at MCG. they did many tests, some of which have never been performed on a baby before. They also told us her chances of making her 1st birthday where 1 in 10, Not good at all. MCG really wanted to jump in and do surgery but we where just not comfortable with that just yet. We had very few answers to our many questions.

Our doctor was not happy either and made a phone call. Two hours later we had an appointment at Duke University Medical Center (DUMC) in Durham, NC, about 6 hours away. Duke has been amazing. they are holding off on the surgery until she is around 7-8 months of age. They reviewed everything MCG had done and agreed on many points. Lauren has been under general anesthesia 3 times already, she has been put on paralyzing drugs, feeding tubes, breathing tubes, numerous CAT scans, MRI’s, and x-rays. She has undergone spinal taps, blood work, shots, and all that jazz. They have even done a PET scan on her with radioactive dye. This is just a small part of what she has been through.

We are going to continue to drive back and forth to Duke over the next few months as we prepare for a very dangerous surgery to remove the tumor. One doctor labeled the surgery “heroic”. They are bringing in the best doctors in the world who do this type of stuff. I’m not going to get into the details of the surgery just yet but it does involve removing the skull bone protecting her frontal lobe if that give you an idea. Duke has said after they reviewed everything that her chances are much better then the 1 in 10, to what extent better they won’t say.

We have had her home between MCG and Duke and have been admitted to both places. She is currently home with us now and I’m actually waiting on a phone call from Rebecca saying wether or not I need to go home and pack our bags to head to Duke as I type this. Lauren has formula running out of her nose like the Mississippi which is a drastic change. Normally very little if any at all comes out during her feeding. So she may need a feeding tube and more tests which means being admitted to Duke once again.

6.4.08
Sure enough Lauren is back at Duke and has been for over a month now. She has her feeding tube as well as her trach. She is doing pretty well, minus the infections she keeps getting. They also did a surgical procedure with her stomach to help with her reflex and she has a big scare there now. The major surgery is scheduled for August the 6th. We will be able to bring her home in June until the surgery provided we can get home health care, ie a nurse with us no less the 16 hours a day, every day.

Home for us now is Durham. NC. I have resigned as the student pastor in Williston, SC to be with my family in Durham. It was not easy to come to this decision but I must do what is best for my family, and that is to be with them daily. Lauren will be close to Duke in case of an emergency and I will be close to her and Rebecca. We do have an apartment here and if you would like the address please contact me and I will give it to you, I would rather not post it here for privacy reasons.

Please continue to pray for our family as we move forward. There is a church looking at us to be their Student Pastor so pray for God’s will in that situation as well as God’s will for FBC Williston.

8.5.08
I have not updated this page in awhile. Sorry. The church in Durham/ Chapel Hill did in fact hire me; I have been on staff here since June 9th. Rebecca and I are getting settled. I would say we are preparing for the surgery but I don’t truly think it is something you can prepare for and it’s less the 24 hours away. Rebecca’s Parents flew in from Florida yesterday and my father and stepmother are driving here from Kentucky as I type.

We have had a few moments with Lauren involving the ER. One on the 4th of July where she ripped out her “G” tube aka her feeding tube going into her stomach via her belly. They did get it back in and we went home 5 hours later. This past weekend it came out again and I was alone with her so I was throwing stuff together to take her to the ER but then I remembered the nurse comes early and ran out side and saw her and she made it all better. Apparently the balloon that holds the mickey button in place (on her inside) got a hole in it.

Lauren is doing great with all her speech, OT, & PT stuff. She has standing appointments every week. Speech by the way is more then just talking. Lauren has an oral aversion and does not like anything in her mouth and they are working her past that. OT & PT are just amazed with her she is doing great in those departments. In fact they said she is ahead of where she needs to be. She is just a little rock star.

After surgery, if all goes well, she should be in the hospital for 2 weeks. We are planning for 4 weeks or longer because that’s how my wife and I think. A good Boy Scout is always prepared. I will put up post surgery pics, which may be graphic but we feel the need to share this with you as you have shared with us in prayer.

The surgery is closing in; in fact it’s less then 24 hours away. We are very on edge and yes we know God is in control. I will try to keep this blog up to date as much as I can tomorrow. I do believe we will be turning our phones off, no offense.

8.6.08

Lauren is out of surgery now and in recovery. We should be able to see her in about an hour. The surgeon said the tumor came out really well. The only nerve they had to take was the v2 branch of the trigeminal nerve which is only responsible for sensation and will not affect any motor skills. The tumor had eroded through the barrier to the temporal lobe but they were able to remove the tumor and repair the barrier safely. The tumor also eroded through the pharynx and we are not sure what affect that will have on things. They fortunately did not have to do anything to the palate area. The tumor was evidently encapsulated and came out pretty easily. They got all of the tumor that they could see and get with this surgical approach. They will be doing a CT scan later tonight to make sure there wasn’t any bleeding and they will do an MRI in the next couple days to see if there is any left that they weren’t able to see. ENT is also going to do a scope to make sure they don’t see anything else. They did not cut through any existing barriers to look for more tumor as they did not feel this was safe. They placed a small titanium plate where they had to remove the zygomatic bone to get to the tumor. All in all the surgeon said the surgery went as well as it could have possibly gone – they removed all the tumor they could see safely and the only nerve it involved they said probably was not functioning before anyway. She woke up a little already and they said she was moving both sides equally and her pupillary function was good. We will post a few pictures in the next few hours or day… mind you they will be somewhat graphic. The major part is out of the woods, now we shall see how she will handle the recovery. The most critical part is over the next 72 hours to make sure she does not get any infections etc… The doctor also told us how “heroic” the surgery was so please continue to pray for her safety.

8.7.08

Lauren is now in the PICU and even though she is somewhat sedated she has managed to be her self. She ripped out her arterial line (which they are not going to put back in) and has proceeded to remove the ventilation that is connected to her trach. She has also been trying to rub her IV out on the right hand by rubbing it against her eye which she has proceeded to bruise more by doing this; typical Lauren. The doctors are saying she is doing well considering everything she has gone through. In fact, she may be taken off ventilation today and moved to step-down or the floor. If she goes to the floor they will have to remove the fenral (don’t know if I spelled that right) line in her leg as well as the tube for her umm… pee pee. They are also talking about taking her off of clear liquids and putting her back on regular feeds. She is still on a good batch of pain killers and antibiotics as well as her head still being bandaged up. Even if we do go to the step-down or the floor we expect to be here another two weeks or so. She had a CAT scan which came back good late last night and she just returned from a trip to get an MRI. We should know the results from that later today. Recovery and healing will obviously take quite some time. Again, Rebecca and I cannot thank you enough for yours prayers and concern for our Lauren.

8.8.08

The MRI has shown that part of the tumor is still there in the cavernous sinus near the 5th nerve. This is a very vital area. We are waiting to hear back from pathology on the parts of the tumor they removed and that will help decide the next step. They may just leave it and monitor her for awhile, do chemo, or they may go in through her face to get it… we just don’t know. So Lauren is now opening her eyes and looking around which is great, the issue is that her left eye is not working in sync with her right (something with the 6th nerve possibly) so she was sent to get a CAT scan just a bit ago. Please pray that it’s only swelling and nothing else… if it’s the muscle it could involve a lot more. We should know more in a few hours.

Fun times in the “portable” Browne household this week. I say portable because we are pretty much spending every waking moment at the hospital. Okay Beck is spending every waking & sleeping moment at the hospital and I am traveling between the hospital, work, and the house to walk the dog. Just so you know I have slept at the hospital one night and will again tonight before someone rides me it’s also been her choice. I have offered to stay every night except Tuesday (because of church Wednesday night) but as you know ANY and EVERY mom wants to be near her child in their time of need, God has made their nature that way.

8.15.08

Lauren is doing pretty good, she is no longer on an IV which is great because she REALLY hated the thing and would spend hours trying to find someway to get it out no matter what limb of her body they put it in or how much they wrapped it up. Lauren did go to the OR yesterday and the scope they did showed that their is still tumor on her cleft pallet. This means that before they can have plastic surgery fix the pallet they will have to remove the remaining portion of the tumor and even more of the pallet. This will happen in the next 2 to 5 monthswe have not been given the all the details yet and depending how much they have to remove of the pallet has an effect on wether or not plastics will be able to repair it at all. Your pallet has huge implications when it comes to eating/drinking as well as speech. They have a retainer device she could use for the rest of her life if they can’t fix it, which will cause more speech issues. Only time will tell with all this. As you can tell from the pictures Lauren also has a left 6th cranial nerve palsy (her left eye will not move beyond midline i.e. tuned inward) this is either from swelling (we hope) or damage to that nerve during surgery. It can also be corrected with surgery but we shall wait and see what happens as well as how surgery on it would effect her vision for life.

What else… oh yeah all the biopsy’s of the tumor material (there was a lot of different material) came back benign and slow growing. This means that they will leave the part of the tumor located in her cavernous sinus and watch it with imaging once a year. Going into this area would cause major problems and if they can avoid it awesome. The other great news is that she will likely be discharged this weekend which is less then the 2 weeks they where thinking and the month we where preparing for.

8.17.08

Lauren came home 10 days after surgery. God is amazing.

10.1.08-12.1.08 (brief summary)

Lauren has been progressing well, we have spent a lot of time at home with her and have even been to church a few times. Lauren has been admitted to Duke at least five times since her surgery for what they think could be phenomena or a upper respiratory infection. They can’t ever get bacteria to grow, but they know an infection is there and she responds well to antibiotics. The entire pediatric staff knows us quite well at this point from the ED(ER) all the way up to the pediatric wings. In November she scratched her eye really bad and it has made life a bit more difficult, we discovered that she has no corneal sensation in that eye. We also had a rapid trip to the ED after who flu shot, apparently she is severely allergic to eggs which from what I understand is what they grow the bacteria for the flu shot in. Lauren broke out in hives, a fever, and was in respiratory distress, never fun.

In the past couple months we have added more medical stuff to her bedroom, from an oxygen compressor and a huge oxygen tank to a nebulizer for some treatments they are trying with her since she has developed a type of lung disease from the trach.

According to the ENT the tumor on her palate has indeed grown and they have scheduled a surgery to remove the tumor on December 5th.

12.5.08

Surgery took a few hours once they stared, it was a long day for us and I want to thank you for your prayers and a special thanks to our friends Jeremy and JIm and our pastor Jim and his wife Sylvia for coming and sitting with us. Lauren made it through surgery and they told us they had to take the entire left side of her soft palate to remove the tumor. They also found some in the muscle in the throat area which required them to take her left tonsil in order for them to reach the tumor down there. At this point her ENT is not sure if they will ever be able to repair the palate at all since they had to take so much of it. We are not sure what option are left at this point, once she has healed more, we will see the plastics guy and find out what he thinks. Either way any attempt at repair will be another year or two out.

The plan at this point is to take the trach out in three months as long as their is no more tumor in that area. Our ENT told us to be prepared because she does not think they where able to get it all, in which case they will have to go through her face and she would keep the trach even longer. Through the face is the last thing we want to do, this has already been so much on her and us already.

12.18.08

Lauren had some odd swelling going on in the hospital so they kept her until Sunday the 7th. We spent three days last week at the pediatricians and the ED because of odd things going on, but they seem to think everything is alright. I think today was a much better day for her. She is an amazing girl. In the morning we will be heading to Duke to meet with the ENT for her post op appt. as well as her next RSV shot. I’ll let you all know more soon.

2.13.09

Lauren’s Birthday is coming up and we are very excited. She is crawling now, has been for about two weeks. She is also pulling herself up and she has learned to blow air around her trach and make noise. Did I mention three teeth and a forth on it’s way in? We have been blessed that we have not been to the ED or been admitted to Duke in over a month. Lauren is sick right now but so far she has not been an any respiratory distress. The doctors still have not figured out why her leg swelled up after her last surgery in December, in fact the swelling has never really gone down. Lauren also has some redness on her legs that at times make her look like a tourist on a Florida beach and it has not resolved so we are going to see a vascular surgeon and possibly a dermatologist. Lauren is scheduled for another MRI in March to see what the next steps are going to be. The plastic surgeon also thinks he will be able to repair her palate but it depends also on this next MRI.

4.12.09

It’s April. Lauren has had another MRI and a biopsy done. The margins are still clear, the biopsy was of some tissue near her left sinus and it’s just granular, not tumor. Her next surgery (which could be one of many) to repair her soft palate will be done after July, when we see the plastic surgeon, which means she will be keeping her trach in for at least another 6-9 months or longer. You should see her, she’s trying to walk every day, and learning so much. She now signs even more words, dog, more, all done, daddy, mommy, good girl, points, claps, where?, and knows others. She has also made up her own signs that we have yet to figure out what they mean, but she is very consistent with them. Is there still tumor? The answer is yes, there always will be.

I’m sure I have left some stuff out and if you would like more details please visit the category section in the column on the right side of this page and look for “Lauren” so you can read more or just click here.