Thursday, June 30, 2011

Gavin's Butterflies

Gramma Gina ordered Gavin a butterfly garden

I sent off for them and we received five caterpillars in the mail a few days later

Gavin patiently waited ten days for them to emerge from their chrysalises

All five Painted Lady butterflies survived!

It took them two days to all come out.

They were beautiful!

We cut fresh flowers from our garden and covered them with sugar water for them to eat.

We released them today - Bye Butterflies!!

Thursday, June 23, 2011

Jacob's poor right adrenal gland.....

Let me just say first that who ever came up with the "How's my driving?" bumper sticker on the back of trucks is an idiot. Who can jot down a number (or dial the digits!) while being ran off the road by a huge semi?! Not me. Too many semis on the road today, driving way too fast. Poor little Sally almost gets blown away when an eighteen wheeler flies by at 80+ miles per hour! Ugh. I'm so tired of the interstate!

Very glad to be home. Today was an easy trip to Shands. The reason we went isn't a light topic, but we were in and out of clinic in 45 minutes. Might be a record. We met with Dr. Islam and his senior fellow. They both did a quick exam on Jacob and asked him a few questions. Dr. Islam said they do believe the tumor is part of the adrenal gland and the adrenal gland will be removed during the surgery. He explained how an adrenalectomy is performed. Laparoscopic will be there first approach and if they can't preform the resection that way they will have to do an open surgery. He explained to Jacob that they would place the camera in through his belly button and he would use three very small incision on the right side to do their work. He said the surgery will take a little less than two hours and if done laparoscopicly the recovery time is about five days. Jacob would spend one night in the hospital. Because he will still have his left adrenal gland he would not need hormone replacements, which was a relief. I asked what would be done if the tumor ended up being a para-spinal tumor and Dr. Islam said it is clear of the spine. I forgot to ask if the tumor will be sent to pathology, but I assume it will.

As of right now Jacob will continue his Avastin treatments through the month of July. He will take the month of August off and is scheduled to have the surgery September 13.

Just to really stir things up, I spoke with Dr. Asthagiri from NIH this afternoon and he had their radiologist who specializes in endocrinology review Jacob's scans. He doesn't believe the tumor is attached to the adrenal gland at all. Dr. Asthagiri has put Jacob's scans out for their endocrinologist surgeons to review and will call me next week.

I also received an email from Dr. Brackmann today from House Ear in LA. He received the scans I mailed him last week and he agrees that the Avastin has everything stable. I sent him a request to review the CT scan of Jacob's adrenal gland as well. I'm curious to see what his radiologist and surgeons will say. I'm not sure they specialize in the abdomen area, but I'm sure they will have an opinion.

Now it's time to pack Jacob up for Boy Scout camp with hopes that he will enjoy next week, carefree of all the NF2 bullcrap he puts up with almost daily these days.

Tuesday, June 21, 2011


I feel very fortunate to have survived last week. We had a blow-out coming over the intercoastal shipping channel in Inglis (halfway home from St. Pete) with no tire shop open for 50 miles on Sunday. Jacob's Shands schedule was changed and his appointment with the pediatric surgeon was canceled on Monday. On Tuesday, Jacob had an audiogram and ABR testing (more exciting appointments, though these were here in Tallahassee) and my 20 year old cat, Booger, was found dead. We laid him to rest on Wednesday next to Gage (my Rottweiler who died 10 years ago) at Jacob and Brie's grandparents home in the country, lightening storm and all. Thursday, we made another trip to Shands for Jacob's infusion and TD had an important interview, all of this while juggling Brie and Gavin and… regular life (if you can call it that at this point!).

Last week’s upside was that we had our beautiful fifteen year old cousin, Darbi, visiting from St. Pete. I loved having her here to hang out with and to listen to her and the kids laugh and cut up. I've never seen two girls paint their toes 100 times, change clothes 200 times and, in between, beat Jacob at Call of Duty on the Xbox! We had fun downtown, taking a tour of the Capitol via the sky walk and having lunch at a little deli, we made a swimming trip every day, the kiddos went to the movies and we had a nice picnic at Maclay Gardens.

Jacob started Lighthouse summer camp, so he had his own adventurous week, the highlights (according to Jacob’s excitement level when telling the stories) being starting tae kwon do classes and going to a SWAT demonstration, which included flash bangs, repelling and a helicopter landing! TD's grandparents visited from St. Pete and we had a very nice dinner Thursday night, accompanied by some swimming, a mudslide and some very needed adult conversation! On Friday, the big kids had dentist appointments (which is becoming a stressful event to schedule as well). Gavin started swimming lessons, Brie started Junior Life Guard training and finally got her braces on and Jacob was tapped into the Order of the Arrow at Boy scouts Friday night out at Wallwood (in the pouring rain!). One of Gavin's favorite friends, Shep, turned two and we attended his AWESOME pool party on Saturday. Add in Jacob's occupational therapy and CST therapy and his weekly Boy Scout meeting on Monday night and it was a crazy week!

I’m very happy to report that Jacob did not get sick from his Avastin infusion last Thursday. He hasn’t felt sick once and hasn't even had a headache, which is an answered prayer for me! It was a long morning at Shands, though, taking almost five hours instead of the normal four. Despite the wait, we had a nice visit with Dr. Smith and went over a lot of things regarding their move, future radio surgery for Jacob's vestibular schwannomas, adrenal tumor surgery and his Avastin treatments. TD took the day off to spend with Gavin and the girls, so it was just Jacob and me. I was informed that the tumor board does feel like it is best for Jacob to have the adrenal gland tumor resected. Jacob's blood results returned mostly normal so his doctors agreed that it is safe to wait until the end of summer for the surgery. Jacob will continue with the Avastin treatments through July and take a break in August. It is recommended to be off of Avastin for four weeks before and four weeks after surgery. We wanted to wait until August if it didn't put Jacob in any danger because abdominal surgery would ruin Jacob's summer. We have an appointment to meet the surgeon, Dr. Saleem Islam, this Thursday. Just another trip to Gainesville… I will know more then. I also sent Jacob's scans and lab results to NIH (Dr. Asthagiri). He called me last week and said they would like to review the scans as well and weigh in with an opinion.

This week started off nicely, spending a sweet Father's Day with the two most important men in my life. I am so thankful to have an awesome husband and dad to my children. I'm really lucky to have such a great daddy too, who has been so good to me all of my life. I love them both so much. I am very fortunate to have a really cool father in law as well, who we missed very much yesterday. I wish we could’ve all been together, especially since it was also Gramma Gina’s birthday. I could never express in words how much they all mean to me....and my mama too!

As for this week, Jacob is back to Lighthouse camp, Brie is taking a half-day sculpting camp at Brush and Palette Studio (Thank you Grandma Gina!!), Gavin is still in swimming lessons, and Brie will be finishing up her Junior Lifeguard training. Jacob has a physical with Dr. Kelch this week and he will be leaving for whitewater rafting and Camp Daniel Boone on Saturday. Next week will be a little more calm, or so we think at this point!

I hope to fill everyone in on Friday about Jacob's appointment Thursday.

Thursday, June 9, 2011

Just another day in paradise......

By the end of the day I was wondering why things ALWAYS have to be so hard, and I was giving myself the weekly pep talk that our situation could be worse…

Starting any day off with only three hours of sleep is never good. If there is a woman out there who knows how to do a complete brain shut-down, I need to talk to you. Immediately. I attempted to go to bed early, but Gavin wasn't ready, as usual, and we ended up falling asleep around 10:45 pm. I guess my brain didn't get enough worrying in before I fell asleep because I woke up at 1:30 and wasn't able to go back to sleep until 3:30. And then I was back up at 4:00. Awesome. So, that is how my day began. Jacob, Brie, Gavin and myself were on the road by 5:15 and at Shands MRI on time at 7:30 am. Tired but ready.

I could really go off on how VERY upset I was when they told me Jacob had been taken off the schedule for his MRI and his place had been filled. You would think after eleven years spent in and out of the hospitals, clinics and doctors appointments that I would be a little more understanding to the mistakes that seem to ALWAYS happen to us. Well, I am not. Instead, I have no tolerance, nor patience, for all the "human errors." I'm sick of it. And the way that the entire ordeal was handled by the “professionals” only made my exhausted and nervous emotional state even more fragile. Jacob's orders and appointment papers were in my hands and they still spent over an hour trying to figure out what happened and "trying" to get Jacob in for his scan. Not once did they tell me they would take care of it, that they were sorry for the confusion or that Jacob would have his MRI. Totally unacceptable. I called the CT scan department to confirm Jacob's appointment with them during the MRI mix-up and I was informed that Jacob had been removed from there as well. YEAY! After another call to Jacob's nurse at Dr. Smith's office, his CT scan appointment was back in place. Again, I was incredibility disappointed with how we were treated when Jacob had completed the first part of his MRI. They came and got us from the lobby, informed us that Jacob was being sent to CT to get his IV and CT scan there and that he would come back to MRI for the imaging with contrast, the second half. Their reason being that another case needed the MRI bed Jacob was on. Really? At this point Jacob was starving and grumpy and I felt like steam could explode from my ears and eyes at any moment. Jacob wasn't allowed to eat two hours prior to CT so it was good that he was getting it over with, but the reasoning was wrong. So, at 9:50 we were shuffled to the basement CT scan department and put in another waiting room. I put more Lidocaine cream on Jacob's arm since MRI hadn't put his IV in yet (his port can handle MRI contrast, but not CT contrast). The tech came and got Jacob around 10:10, popped his IV right in (Jacob didn't feel a thing, which might have been the highlight of the day) and took his pictures. The IV placement and scan went very well and Jacob was very happy that he didn't wet his pants, lol (if you have never had a CT scan with contrast, the contrast makes you feel all warm and gives you the lovely sensation that you have wet your pants)! By 10:30 Jacob was retrieved by his MRI nurse, given juice and a snack and sent to a room to wait for the last part of his scan. Brie, Gavin and I were back in the lobby, waiting. Because Jacob fell asleep in this second half of his MRI, it went a lot quicker. Evidently, they can get better pictures and quicker when the patient is completely still. Duh. I always remind Jacob of this, but I guess he can't help but wiggling some. Jacob was done by 11:40 and the techs said he did a great job. We got lunch and headed to the hematology and oncology clinic. Our appt was at 11:30, but they don't mind if you are late due to another appointment. We ate and waited and everyone in our party seemed to be in good spirits given that we were on the last leg of our trip.

Even though they gave me the bad news first, I will start here with the good news. Jacob's MRI imaging of his brain, neck and brachial plexus showed no changes from the January 2011 scan. This is fantastic news! Either Jacob's tumors are on strike or the Avastin is doing it's job. The bilateral vestibular schwannomas have not grown and, since no growth is noted since the last scan, they are considered stable. Also, the right frontal lobe tumor has not changed. I am very thankful for this great report. They didn't get a great look at the ependymomas in the cervical spine because they were getting images of the brachial plexus, but they will scan them at NIH in August. Jacob will also have the brain and total spine scanned then and we will have more information.

As I mentioned on Jacob's Caring Bridge yesterday, the CT scan was to look at an adrenal gland mass (tumor) they hadn't look at in a while. I was looking through Jacob's medical records recently and noticed that it had been several years since it was imaged last. I found it on a spinal report from 2006 and another mention that it was unchanged in 2007. I believe the staff said the last CT of the adrenal gland and kidney area was in 2009, but I'm pretty sure it was in 2006. I can't find the CT record in my things, though. My “things” are growing uncontrollably at this point, so it could very well be the case. Anyway, at that time the tumor measured at 6 mm and Dr. Smith had Jacob do a 24 hour urine test to rule out Pheochromocytomas which is a type of tumor of the adrenal glands that can release high levels of epinephrine and norepinephrine into the body. Those results were negative. Jacob's doctors were not concerned about it and said it could be imaged again in a few years, that they would watch it on the MRIs. I honestly think with everything else going on with Jacob that this adrenal gland mass was forgotten about since it wasn't red-flagged on any of Jacob's spinal MRIs.

I was disappointed that Dr. Smith was not in clinic today to meet with us, but we did see another pediatric oncologist, Lamis Eldjerou, MD. She pulled up Jacob's CT scan and her and Hillary went over the images with me. The 6 mm adrenal gland tumor has grown to be 60 mm, 10 times it's size since it was last scanned and now it is a cause for concern. On the up side, it isn't invading Jacob's kidneys, stomach or liver. 6 centimeters is pretty big though and it looks like it could start pushing on organs any day now, in my professional opinion! Hillary called Dr. Smith and ordered blood work and urine labs. They will once again be checking for metanephrines to rule out Pheochromocytoma and also, as a precaution, will be looking for markers of Neuroblastoma. They do not believe it appears to be cancer, but they have to check. The tumor also has some calcification. I will have more information after the labs return. There are a few cases of adrenal gland tumors seen in Neurorfibromatosis type 1. Even though Jacob's genetics were negative for the NF1 mutation and positive for the NF2 mutation he still has several symptoms similar to NF1, like his plexiform brachial plexus tumor. Hilliary also contacted Dr. Asthagiri and he wants to see the scans. The scans will be sent to pediatric surgery for a consult to see if they recommend having it removed now. We also discussed adding a second chemotherapy drug to treat the adrenal gland tumor instead of surgery. If Jacob has surgery, he has to go off of the Avastin for several weeks before and after. TD did find online where if an adrenal gland tumor is under 10 cm it can usually be removed via laparoscopic surgery. We are only speculating though. Like I said, we will know more after the labs return and the other tumor board of doctors review Jacob's case. I hope this will be done in the next few days.

The cherry on top of our pile of bad news today is that on July 15, 2011, Dr. Amy Smith and the entire Pediatric Brian Tumor Program is moving from UF Shands in Gainesville, FL to Arnold Palmer Children's Hospital in Orlando, FL. This includes not only Jacob's oncologist of eight years, but also his beloved nurse practitioner, Hillary, and fantastic social worker, Michelle. I'm not sure what nurses will be leaving as well, but we love all of them. I am completely crushed. Years ago when no one knew what Jacob's diagnosis was or how to best treat him, Dr. Smith took charge and has held our hand through this difficult journey. Through tears I told Hillary that they are the glue to Jacob's puzzle and I will be lost with out them. I know that Dr. Smith and her team are best qualified to take on Jacob's complex case. I am thankful that we do have the option to stay with them, but I don't know how we will do this with lack of time and funds. Orlando is four hours from our home, one way, and with Jacob going for treatments every other week it would be a great burden. I will be putting a lot of thought and prayer into making the right decision over the next month. Hillary did tell us that Jacob could stay at Shands and they will have a new pediatric oncologist on staff, but not the brain tumor program and group. I do not want to start over, but we will have to consider it as an option. I will be doing more research over the next few weeks and we will do the best we can for Jacob.

After all of this news Jacob is, well, being Jacob. Other than his port being accessed without being numb today (twice), he has no complaints (he had the unexpected blood work this afternoon). He has named his adrenal gland tumor Franklin and he made the comment to me that he knows it could be worse. He said, "I'm ok. I'm not going to worry about it." Driving home this afternoon feeling completely distraught, I looked over at Jacob with his basketball shorts pulled up to his boxers line (sunning his legs), earphones in, singing way out of tune to some shot out country song and I just laughed out loud. I thanked God for this wonderful and unique young man who is teaching me so much (and it isn't “How to be Weird!”). He's just going with the flow, living and basking in the sun, so to speak, at every chance he gets. I love him so much.

Please continue to pray for him. Please pray for me and his doctors. For all of us to do what is best for Jacob.

Thursday, June 2, 2011

SAIT # 5 & 6

Last night was the worst Jacob has ever felt after an infusion. I felt really bad for him. He had pretty severe nausea, some mild vomiting, eye pain, a headache and was extremely emotional. He didn't eat much dinner (not that I blame him for that, hunter’s stew isn’t exactly my favorite either) and went to bed by 8:00 pm. He did go to school today since it was an exam day. His nausea was gone this morning, but he feels like he has the flu, complete with achy muscles and eye and head pain. I’m glad it was an early release day. I picked him up at 11:00 am because he didn’t have a second exam. He’s been taking Tylenol for the pain, but he didn't want to take any Zofran or Phenergan for the nausea. He ate a decent lunch today, so I’m hoping this afternoon he will feel better. He had a yearly evaluation at Division of Blind Services this afternoon (before the Lighthouse summer program starts) and he still wanted to go and get it over with. He’s going to call me if he needs to come home. He's a trooper!!

Aside from the after-effects, his infusion went well yesterday. Jacob was very happy that his dad and stepmom, Jill, were able to take him. I’m so glad everything went as planned. When Jacob got home yesterday he shared the events of the day with Brie and me. The first thing he very proudly said was that they were at the hospital before the office and lab even opened! Thank you, Jill!! If you know Bill (Jacob's dad), he is notoriously late for everything, so Jacob wanted to make sure I knew that he made it on time. Jacob said Jill had a checklist and made sure everything went as it was supposed to go (I hope Jacob will do this advocating for himself one day, but he isn't there yet). Jacob said his dad turned white when the nurse accessed his port and Jill was worried he was going to pass out (Todd, I know you can appreciate this!). He said they killed time by talking and laughing and he enjoyed looking up the history of some hospitals they are familiar with. Unfortunately, Jacob's cousin Nick (Jill's nephew) was suddenly diagnosed with brain cancer a month ago and is being aggressively treated at a children's branch of Emory Hospital in Georgia. Emory was one of the hospitals on the discussion list. Perhaps the most important part of any trip for Jacob, he had to tell me what he ate, with the meals for the day including McDonald's for breakfast and Cracker Barrel for lunch. As of yesterday morning we were waiting to hear from Camp Boggy Creek to see if Jacob had been accepted. Jacob said they checked out the board with info and pictures about Camp Boggy Creek yesterday before leaving. He said he slept on the way home because he was so tired. I guess the Avastin is catching up to him.

It was hard for me to not be there with Jacob yesterday. I felt like I was missing something important, but it is equally important for Jacob to share those times with other members of his family. As always, I appreciate any help we can get. I know it meant so much to Jacob to share that time with his dad and Jill.

Jacob has an MRI, CT scan and an Oncology appointment next Wednesday. Just another trip to Shands!

I did get the email yesterday afternoon informing us that Jacob has been accepted to attend Camp Boggy Creek the week of July 26th. He will attend camp with other children from North Florida who are suffering from cancer or other similar illnesses. We are so thankful and excited that Jacob is going to have this opportunity! Jacob is getting excited too (the nervousness is wearing off)!

Thank you again for your continued prayers and support and thank you for reading.

This was taken from Jacob's caring bridge.  I wrote a short post about Jacob's Infusion # 5.  Just adding it to keep things in order :)


Jacob's infusion last week went very well. It seemed very routine and everything went just as the previous trip. My mom went with us to help me with Gavin and keep Jacob company when I was taking care of Gavin. Thank you mama! Jacob was very tired on the way home and didn't feel well, but by the time we got home he was feeling better. By Thursday night he was back to himself and you wouldn't of even known he went for chemo the day before. On Friday Jacob went to his eight grade dance and wow! was he handsome in his dress clothes. I haven't seen him dressed up since Thomas and I got married five years ago. Jacob had a great weekend. The end of the school year is approaching so the kids are excited summer is almost here. Getting though exams is next!!

Jacob will go next week for his infusion and has an eye appointment. Jacob was very excited that his dad and step mom may take him. I'll let you know how that goes.

Thank you for the continued prayers and support. We are very thankful Jacob is doing so well on the Avastin. Hoping his June and August MRIs will show positive results!!