Wednesday, August 29, 2012

Short update 08.28.12

Another week has past. In the words of the oh-so-wise Will Ferrell, “Keep on truckin’!”

Brie is now officially a freshman in high school, and, even though her first week was a bit rough, she has a schedule filled with the best classes and great teachers and she is adjusting. The past two days have been good days for her at school and I'm really happy my "It will get better" pep talks are turning out to be the truth.

Gavin started school last week too and is a happy big PreK3 student! Gavin hasn’t missed a beat and loves his Tuesday/Thursday schedule! When I picked him up today, he said, "It's a really good day, Mom." His class is doing an All About Me unit and getting to know each other. Last week they had a visit from Dora and went on a star hunt, but we didn't get the whole story on that one. Today he said he really enjoyed devotional and I know he loves being on the big playground. I am also proud to brag that Gavin ran in his first cross county 3K (1.86 miles) race this past Saturday, the Miller Landing Madness, which benefited the Second Harvest Food Bank. Gavin finished in 26.53 minutes and only walked and complained a little. That's a long way for a little guy! TD and I loved running next to him and cheering him on (though I imagine there were some other parents there that might’ve thought we were a little too vocal about making sure he wasn't last!). Kids RUN This Town has challenges coming up in September and October and Gavin is going to be ready!!

Yesterday started a busy week for Jacob, who continues to do well and move forward in his healing. Jacob started back with school work (at home) this week and even took out a light load of recycling yesterday! He went to hand occupational therapy Monday afternoon and he will continue OT at Progressive Pediatrics once a week for the next three months for his left hand. Jacob is still coping with numbness, but his strength and range of motion are good. Today he had his braces adjusted and tomorrow he will have his teeth cleaned. Thursday is Nana's birthday. Happy Birthday, Mama! Jacob and I will have a little outing to see her. Friday will be a big day. Jacob will have his hearing tests, an audiogram and ABR testing done at Audiology and Associates here in Tallahassee and we are praying for good results and no hearing loss! I am excited about the three day weekend. I'm always happy to have TD home an extra day, but I will miss Jacob and Brie so much this weekend. Jacob will be making his first trip away from home Friday evening to see his dad and his family for the first time in over a month. Jacob said he is ready! TD, Gavin and I will be watching football, GO FSU, and eating. I have a huge One Week Boutique mess I need to work on and Tammy and I will be running on Monday, bright and early, in a 5K race to support our local Red Cross Hurricane relief. Wish us luck!!

I will let y'all know how the hearing evaluation goes and keep you posted on how Big J Willy is doing. We head to Orlando on September 10th to talk about Jacob starting Lapitinib. You can read about it here . It is the only drug being used in the NF2 community that Jacob hasn't tried yet.

Never giving up!!!

Sunday, August 19, 2012

God is Good!

For those of you who aren't on Jacob's Facebook Team page and haven't seen my pictures and short status updates on there, I am so sorry it has taken me so long to provide you with an update. I can't believe tomorrow will be post-op day 14. Time has really gotten away from us these past few days… well, I guess it’s been a week now. I remember the day so well, almost 18 months ago, when it was brought to my attention that Jacob had a tumor on his C7 spinal nerve that was of great concern. I can recall the dread of each of the subsequent MRI results and I anticipated with great anxiety the time surgery would come and what the aftermath could be. I’m full of information about the surgery and the last two weeks of Jacob's recovery. I could write a small novel I'm sure, but when I sat down this afternoon, I tried to think of the most important things I wanted to share with everyone.

First and foremost, Jacob is doing so well! It is a miracle. Simply amazing. Jacob is off "heavy" pain medication and although he is still uncomfortable at times, he is mostly pain free. He is showering, dressing, feeding himself and walking short distances comfortably. Jacob had his 19 staples painlessly removed on Thursday at Southeastern Plastic Surgery. Southeastern Plastic Surgery has a gorgeous office, extremely pleasant staff and Jacob had one of the prettiest nurses named Leslie, and it is always nice to see anyone in the Rosenberg family! Leslie had Jacob chatting away as she removed his staples. Jacob said he didn't feel a thing. Thank you, Dr. Laurence Rosenberg! His incision looks super cool and is healing perfectly. Jacob, other than being bored, is in great spirits and ready to tackle occupational therapy for his hands next week. He is still aggravated about the numbness in his hands and upper arms, but considering what could have been, we are extremely grateful for his surgery results.

God is good and he heard our prayers. Your prayers. Jacob is a walking testament of God answering prayers. I cried tears of joy for my son this morning in church instead tears of fear. I wondered in my heart why I ever thought God wouldn't carry us through. I know a lot of you, like my mom, pray for God to heal Jacob completely. I know that it is possible, but I have felt for a long time that it isn't God's plan. I believe God is going to use Jacob and his NF2 for other things and it isn't for me to understand (although I’d be lying if I said I didn’t question it daily). At times it is very hard to swallow, to watch Jacob (and so many others we love) go through the trials of NF2, but right now, in the place we are in, I want to rejoice in the good. I prayed for God to help me decide which doctor to use. I know without a doubt for a long list of reasons He sent Jacob to Dr. A. I prayed for God to guide Dr. A to do his best with Jacob and bring him back to me in as good of shape as I handed him over. He returned Jacob to us with his strength and motors in tact in his left hand, strong legs and free of four tumors. I prayed for Jacob's recovery to be as painless as possible, and to be speedy (no one likes a miserable teenager for prolonged periods of time!). I believe these prayers were heard and answered better than I could have imagined. I prayed for love and support of our family, friends and community and we were given that in abundance! I prayed for so many things and each prayer has been answered. I know our NF2 war will continue, but I want to marvel in this battle won and give thanks to God. I will add that Dr. Asthagiri is an angel in disguise, as are our teams and staff at NIH... Oh, and Jacob too. Jacob, you are my hero. I am so proud to be your mama!!

As you can read a lot has happened since I last wrote a week ago. Jacob and I returned home Monday evening to a house full of loving family. Seeing TD, Brie and Gavin at the airport was like breathing fresh Tallahassee air for the first time in months. My heart felt full again and I was a happy girl! Time felt like it stood still when I was able to wrap my arms around Brie. I had worried almost as much about her as I had about Jacob. Her heart was broken that she had to be so far away from Jacob during such a difficult and scary time. They have been inseparable all of their lives. It felt good to have our family whole again. Jacob was so happy to see TD, Brie, Gavin, Papa Ken, Nana, Gina, Dana, and Renee, but he was ready to get to the house and eat Guthrie's chicken. We had a nice evening just all being together at home. There really is no place like home! The rest of the week has consisted of trying to unpack, unwind and get things back in order. Gavin has had a very congested nose all week, so I am running on very little sleep, but he is starting to feel better and his nose seems to be clearing up a little more each day. We are trying to get some lost weight back on Jacob and getting Brie and Gavin ready for school. Jacob enjoyed visits from Papa Ken and Nana, Aunt Becky, Uncle Todd and Chason this week. Several of the Boy Scout families visited and brought dinners to share with our family, taking a lot of stress off of TD, who is the chef in our house. Thank you all so much!! Maks and his family visited Jacob and Maks stayed with Jacob Thursday night so Brie and I could go to her Leon High School freshman orientation Friday morning. Yikes! My baby girl is starting high-school tomorrow!! Brie is nervous, but I know she is going to do fabulous. She has a great schedule including honors academics, dance, art and computer class. I really liked all of her teachers and her path to her classes isn't as crazy as Jacob's was last year. For those of you not familiar with Leon, it is an OLD, US National Register of Historic Places school established in 1831. It is three stories high and has an adjacent two story building full of classrooms, and multiple portables. Lots of stair-climbing and walking! I was sad Brie didn't get Mrs. Harris for English, but Mrs. Chancy seems like she will be lots of fun! Leon was good for, and good to, Jacob last year. I believe it will also be a great place for Brie to grow and learn. BTW, Mrs. Harris, Jacob did do his summer reading, but hasn't finished the writing part of it as of yet, but he will!! I am a bit annoyed that no one in guidance or the attendance office can seem to find the Hospital Home bound teacher form I need for Jacob, but I have faith that it will be taken care of this week... we'll see. Speaking of school, our littlest biggest guy will be starting PreK 3 on Tuesday. Gavin and I had a nice time at the Killearn Kids Preschool Meet and Greet on Thursday morning. Gavin's new classroom is colorful and full of so many new and exciting things for him to do. We liked his new teachers and had fun exploring his new room. We even met a few of his new classmates. I am little disappointed that none of his friends from last year will be in his class, but we are viewing it as a positive chance to make more awesome friends. At church this morning, Gavin participated in a very special service called the Blessing of the Backpacks. All of our children bring their backpacks and stand in front of the congregation in the sanctuary and the pastors, along with all of the families pray, over the children for the upcoming school year. Gavin was so adorable, one of the smallest on stage, and he listened and prayed, eyes closed and all! It was precious. I left feeling very good about the year to come. After the service, we went to show TD Gavin's new classroom and after looking over the other classroom rosters posted, we saw that several of Gavin's close friends from last year are in the five day program and Gavin will get to see them at recess. This made me really happy too.

I had a little me time this week. Much needed and appreciated. Nana came and stayed with the kids and I went and saw one of my close friends, Christi, at Kelly's Cottage at Lake Ella. I left two hours later feeling refreshed with a much needed cut, color and girl time to brighten my day. Thank you, Christi! I love my new hair! And thank you, mama, for staying with the kids! I’ve gotten two good runs in this week and logged 13 more miles. I have some new gear to write about, but I will save that for my running blog. Still loving running!

As I said in an email to Jacob's Boy Scout troop leader, there are not enough words to express my appreciation for the love and support we have received over the last few weeks! From close friends and loved ones here in Tallahassee, to Jacob’s Boy Scout Troop friends and family to my online NF2, hot mamas, and other digital friends and families, I am so blessed to have all of you, spanning the entire country, and even a few in other countries! I really don't know how we got so fortunate. Thank you all so much!!

Saturday, August 11, 2012

Enjoying his warm and cozy recovery gift from Susan and fam :)

Dr. A came in and saw J this morning. He said Jacob looks really good, his MRI looks fantastic, his incision looks great, and if Jacob gets moving he can go home Monday. Our walk outside was brief, but J worked hard and he's now resting up for round two a little later....oh and no spinal fluid leakage at this time. All awesome news!!!

Jacob is extremely proud of his 19 staples, as he should be. I am very proud of Jacob and another battle won against NF2! Feeling very thankful for God's hands, all of your prayers and Dr. A right now

I am happy to announce that Jacob just had his port access removed!! It was his last string attached!!!

This is an original photo from ICU. His left arm & hand had three different lines in it for veins and artery. His chest was covered in monitors, his port in his upper right chest was accessed, he had a very uncomfortable catheter. Each monitor and access has been removed one by one as they were no longer needed. He is now line free!!
First time outside in six days

Taking a short break on our first long walk

Bring it!

Friday, August 10, 2012

It’s all hearsay, I tell you!

Today has been a trying day to say the least. I’ve been tasked with writing the BigJWilly update thanks to the lack of over-the-counter, stop-headaches-after-crying medicine available within NIH. Since all of this is based on a few out-of-order text messages courtesy of the trifecta of crap comprised of Sprint, Android and Tallahassee, please understand that while most of this will be true, there will most certainly be some biased comments that are completely wrong, both medically and morally. Thank you in advance for reading.

I went to sleep last night with the image of my wife in a camo Drake hoodie cussing out MRI staff flashing brilliantly over my eyes. I was a proud husband. It was 10:30 or so, and Jacob was still in MRI. I think that story’s been told, but for a quick recap, they (ICU, MRI, all of the above) messed up, causing mother bear to set things straight. Ultimately, everything that needed to be done was done, most likely with each of the techs looking over their shoulders for the elusive but ferocious Tallahassee running mombear.

I woke up this morning to nothing. No call. No text. Nothing. I hoped they were sleeping, so instead of bothering them directly, I posted some stuff on Jacob’s Facebook page so that each time someone commented, it would gently vibrate on their heads and let them know that I was thinking about them, along with the rest of the gazillion people that are supporting Jacob and our family through all of this, which I find both amazing and humbling, all wrapped in awesomeness!

My first conversation with Tammy occurred around 9:30 this morning, and it was not a happy conversation. We had a brief discussion last night about the fraternity of doctors-with-too-little-to-do, otherwise known as Infectious Disease. I dismissed what Tammy was saying because she was tired and venting, and because I thought it was resolved. Apparently it wasn’t. As Dr. Asthagiri gave Tammy great news about Jacob’s MRI, that everything about the surgical site looked great, she was also being told that Jacob may have a nasty bacterial infection that could or could not have originated in his port, and that, if the blood work taken from his arm comes back with hints of said infectious disease, it may require additional surgery on Monday, up to and including the removal of Jacob’s port. Commence pumping Jacob with more antibiotics. Awesome. Additional worry and stress, check. And the waiting game began again.

According to Tammy, one of the people in the hospital (I will not try and guess who) told her that the results of the blood work would be available 24 hours and 25 minutes from the time the test started, which would have been early afternoon today. I wish the weathermen in Tallahassee could be so bold as to make predictions like this! 50% chance my… Anyways, I knew that despite all of this, there were goals at hand, like OT and PT and standing up to pee, and that they had a fairly busy afternoon of training if they were still going to come home to us on Monday (because Tammy just knew that the Infectious Disease staff was wrong and that whatever they found was probably because they did something stupid). I started to worry around lunchtime after calling a few times and failing to get a response. Thankfully, she just didn’t want to talk to me at that point (kidding, I hope)!

Tammy sent me this picture around 2 this afternoon of Jacob, dressed in basketball shorts and a Guy Harvey with sleeves (for those of you who know about the sleeveless Guy Harvey’s, you understand my cheerfulness towards the sleeves!), walking down the hallways with PT Joe. Yeah, I know you can’t see him, because he’s walked too far down the hall!

According to the previously referenced texts, Infectious Disease determined that the bacteria was a “contaminant,” meaning that it did not originate in Jacob, and that Jacob could stop being pumped with infectious disease-killing antibiotics. “She” (a co-ed fraternity, it seems) said that it is believed to have come from the top of the test tube containing the blood sample. A big sigh of relief, accompanied with a big spoonful of “Tammy was right about Infectious Disease.” At this point, I’d imagine that there was some crying. Tears of joy, of course.

PT had Jacob walk 250 ft this afternoon. They gave Jacob a high-backed wheelchair for Tammy to push him around this weekend, you know, to “get out!” More importantly, Jacob will be taking a shower and removing his bandage tonight when the shower chair comes! And no more swabs! The TV is fixed in the recovery room as of today, so everything seems to be falling into place.

Throughout all of this, it has been most difficult for me to be here in Tallahassee knowing that both Jacob and Tammy could really use someone else in their corner up there. Especially to take care of Tammy in those fleeting moments where she might actually let someone spell her for a minute or two. I cannot give enough thanks and gratitude to Casey, Lacey, Gracie and Ben for being there for Tammy and Jacob. I was able to sleep a little better knowing that Tammy and Jacob weren’t alone on this journey. Thank you.

So, I sit here, praying for a good night’s sleep for Tammy, a speedy recovery for Jacob, peace of mind for Gabrielle, a beautiful Saturday outside for Gavin and Pop, a nice drive for Gramma Gina, a way to show our appreciation to all of you who take the time to pray for Jacob, something to do, preferably outside the NIH walls, for the Infectious Disease staff, and a win in a meaningless preseason game for my Bucs. If only one can come true, I’ll apologize now. I cannot bear the thought of Miami winning.


Wednesday, August 8, 2012

Written Aug 7, 2012 3:04pm
I was waiting to update until surgery was over but it is taking longer than expected. 
Jacob went to OR at 8 am in good spirits. His OR nurse even put country music on for him. I got an update at noon that the large tumor removal started and another update at 2:00 that Dr A was starting removal on two small tumors. Both updates the nurse said Jacob is doing great. They will contact me again when they are closing. Then the second big wait will start to see how Jacob's hands and legs are doing. 
Thank you all for your prayers and loving support today. Keep them coming!!!
Written 18 hours ago
7:30 pm After 11.5 hours Jacob is recovering in ICU. He can squeeze my hand and wiggle his toes!! Praise God. 
There ended up being 5 tumors total. The removed all of three of them, 95% of one & left a tiny one on the motor nerve to the left hand.
10:23 pm Jacob is awake and talking. He is in pain, but coping as best he can. His body has been through a lot. He has a morphine pump and is on zofran. He's been able to have ice chips. Jacob is complaining of numbness in both his hands. They feel "asleep." I'm not sure if this is normal or not, but I'm hoping its normal. Not one of the things Dr A mentioned but the ICU doctor is aware. 
They are going to let Jacob eat soon. 

I can't wait until he feels better so I can read to him all the emails and messages of love and prayers he received today. 
Thank you all!
Written 10 minutes ago
Good morning. Yes, I know it's 3:30 pm but it feels like morning to us. We finally got a few hours of sleep this morning around 9 am to 12 pm.  Last night was rough. Jacob has been uncomfortable and in pretty bad pain off and on. They are trying to find the right combo of drugs to get his pain under control.  His blood pressure was really high last night and he was given drugs to bring it down. It is controlled now.  His heart rate has been really high for over 24 hours now, but it's at 130 BPM now and that is an improvement. His EKG was abnormal so they are watching his heart closely.  He had one of his ventricles stop for a moment last night and that was of great concern for a few hours.  He had a fever of 102 last night but that is down now too.  The ICI is thorough if nothing else and they don't think you need sleep, lol.  Today has been better.  Jacob ate a little breakfast and lunch. They wanted to get him up and have him move out of ICU, wanted him to do a MRI, but all of that is on hold right now.  Dr. A has come in to see Jac twice now.  The numbness in his hands is normal and may take several months to calm down.  His right hand may always have some in it. The good news is that even though it is very painful for J to lift his arms or legs he CAN and he seems to have the same strength as before surgery. As time goes on we will have more info but for now I am so happy that his "Neuro" exams are going well.  Reflecting on the surgery info from yesterday I am so thankful we came here with Dr. A and he choose to do what is best for Jacob's quality of life and not what was the easiest....and he completed their main goal.  Jacob now has a happy spinal cord!!!
Today we are watching for blood clots to form in the large areas the tumors were removed.  Tomorrow we will be watching for spinal fluid leakage and hoping J won't need a lower spinal drain.  I have a lot more info to share but will do that at a later time.
I read Jacob some of his messages of hope this morning from all of you. It was hard to not cry tears of love so we only got through some of them, but we will have more to read later.  He knows he has an army who is lifting him up with prayer and hope!!
Thank you all so much.  My words are never enough.

Monday, August 6, 2012

Notes for LTML and Caring bridge:

August 5, 2012

It's 6:25 pm, in flight, and the captain just turned off the “no electronics” sign. Jacob and I are finally on our way to DCA. Our day started entirely too early in St. Pete this morning. After our busy weekend, it was hard to get up to drive home, especially since we were headed home just so we could fly to DC for Jacob's surgery. TD has to go back to work and Brie has to take an Algebra EOC exam tomorrow. Just so we’re clear, I'm extremely nervous right now. We are in extremely thick clouds and pushing through turbulence. Our flight was delayed an hour due to bad weather and prior to departing, we were informed that we had to get extra fuel in case we had to fly around storms. Awesome. Jacob is a happy guy right now, though. His fellow Boy Scouts, Leaders and their families all came to the airport to wish Jacob well. They made this incredible poster for Jacob, too. Papa Ken, Nana, Pop Dana, TD, Brie, Gavin and me added to the group, so Jacob had an impressive mob of fans. My heart is truly warmed by the abundance of love we have received for Jacob. These are the moments that remind us of our foundations.

[A little while later…] Whoa. Rough landing. We survived and are waiting at TGIF’s for dinner (thank you, Papa Ken & Nana). Jacob is talking on the phone, and yes, he is still reliving his awesome fishing trip from Saturday. He and I had a great conversation about his little send off gathering at the airport. He is on cloud 9. Everyone coming to see him was really special. I printed the wrong shuttle schedule (the 06/15/2007 version) so the 9 pm bus to NIH that I thought we would be on doesn't exist. Oh well. We will be riding the Metro Subway. Again.

Hello, beautiful Children's Inn. Finally, after a four hour van ride from St. Pete to Tallahassee, the a vehicle change because our van broke down AGAIN on the way to the airport (if you can believe that), then a 2 hour flight that started an hour late, a 90 minute subway trip and lastly a fifteen minute walk from the subway to the Inn (because campus shuttle was shut down for the night and security isn't available), we made it. No biggie right? It's only 11 pm, lol. We did see a beautiful doe on our walk and we have a huge room with two big windows and a nice view of the hill. Too bad tonight will be our only night sleeping here.

August 6, 2012

Day before surgery.

Yesterday, when dressing for the airport, I put on my little pieces of love and hope. My Beads of Courage bracelet, blue CTF Cure NF2 arm band, my family birthstone ring, memory necklace and my necklace that's pendant reads, "The most beautiful stones have been washed by the waters and polished to brilliance by life's strongest storms." Jacob is a jewel for sure! At the airport yesterday, one of Jacob's Scout leaders gave me another precious piece to cherish, a "May Prayer Strengthen You" coin. I'm sure it has been held during prayer and I will keep it close to my heart to remind me of God's love and strength and our family and friends praying for us at home. The outpour of support Jacob and our family is receiving is amazing. God is working through so many people right now and I am in awe.

Even though I did phone admissions over a week ago, it was our first stop this morning. As always, everyone was very nice and it was painless, signing a few pieces of papers. We went to 1 Northwest and Jacob was admitted into his room, 1-1664 NW. We had to do a looong intake and a tech came in close after and took Jacob for his height and weight. Jacob had his port accessed and labs drawn, the usual. Dr. Asthagiri came in and talked to us, as did Dr. Yong. Jacob was able to ask all of his questions. I will write about our conversation later when I have my thoughts better in order.
After Jacob had lunch, we went to his pre-anesthesia appointment at 1:15 and then had his chest X-Ray. Now we are waiting for the doctors to say it is ok for Jacob to go over to the Inn to "hang out".

I am happy to report NIH has a new wifi system and that I can use my stuff! Yay! That makes Jacob and me both very happy. Jacob loves his new iPad.

To be continued :)