One Step Forward, Half Step Back

Yesterday we met with Dr. Boppana- the Knoxville Radiation Dr. We also received a call from Dr. Maylapa- Florida Radiation Dr., stating he was concerned about doing radiation since the new tumors were so close to the brainstem. We opted to wait and see what Dr. Boppana said...

Dr. Bopanna expressed his concerns as well and he is waiting for the Fl. group to overnight a disk showing exactly where radiation was done. He explained that even the outskirt areas received radiation last time and he can't risk it if they are close. Dr. Boppana said he would let us know something by Monday (always the magical day) and we could go from there. So for now, Todd will start Avastin and continue on his merry way.

I'm done... I'm tired... I cried. I cried a off and on last night. This is so draining emotionally. In addition, I was sad that we couldn't attend our friends funeral. For so many reasons, Todd did not need to be there.

I know there is eventually a light at the end of the tunnel. The light seems dim today however... it's still there!

I will post again about his first treatment but this was yesterday's news (Thursday.)

Final Pathology Reports

A bit of back story... I spoke to Dr. D on Friday evening. She called to check on Todd and talk to me about what I 'knew.' She said it appeared the tumor cells were at least a grade 3 and it was possible that there were some grade 4 cells. (Grade 4 cells would be the worst and hardest to battle) As true Dr. D fashion, she explained the only bright side of grade 4 cells-no insurance denial, she comforted me by explaining that the new cells were found early and she was our team leader to help us fight... I just love her! I secretly dwelled over the weekend and prepared for the worst. I planned on hearing the results on Monday so I kept my phone by my side and every right or vibrate, my heart raced. By 6pm on Monday... no call :(

Ok, Tuesday is a new day... Dr. D called about 10:45. She said 'I have a bit of good news." I think I cried a bit... This is what she told me:

• Tumor is an ANAPLASTIC ASTROCYTOMA
• Grade 3 but still have grade 2 mixed in (best case scenario)
• Chance of Mitosis-I had to ask what Mitosis was... The chance of it dividing and making more cells were rare, 5-10%.
• Start Avastin-which I learned from Dr. D is more of a vaccine type of drug and is not a chemo drug. Apparently it blocks the blood to the tumors so the tumors can't function. Every other week via IV.
  
• Start Radiation-will have to add another sailor to our ship... We have a Radiation Oncologist but he is in Florida so now we need a Knox Radiation Oncologist.
• Once radiation starts, continue on Temodar- chemo he has been on, taken orally.

That's the highlights... It wasn't horrible news for the situation. Todd's in miserable shape. I called him a 70 year old man and really right now, he's probably in the shape of an 85 year old man. He has horrible dizziness and he balance is so unstable. He can really only get around from kitchen to couch to bed. Since he's a fall risk right now, I don't even want him moving around that much. He's only allowed to shower when someone is at home and he's not driving right now. He also has very slow, slurred speech. It almost sounds like he is drunk... I talked to Dr. D about that and she said this should improve with increased Decadron (steroids) and over some more time. I was told the Cerebellum (brain) heals very well and within the next few days he should be improving.

Tomorrow we plan to meet the Radiation oncologist then we are off to a 'teaching' of Avastin and for him to make sure all his levels are OK in order to start Avastin. If all goes well, Avastin will be started on either Friday or Monday.

Shew, it's a lot of information and somehow I am keeping up. This juggling of caregiver, wife, mother, employee, friend and whatever else is so draining. :) I struggle with saying my peace sometimes and I know that too is wearing on me (I typically have no problems speaking my mind either, LOL). So, new focus...

Ty is being a trooper. I have poked and prodded to get some emotion out of him however he's not ready to show any. He says he's fine and he understands the situation... He's been a great help with Todd around the house. I am waiting for him to 'crack' but all is good at this time. I think it is important for his life to remain as consistent as possible so I will do what I have to do to accomplish this.

I appreciate everyone who has called, texted or stopped by. It has definitely been noticed. I've told everyone that we are good on food. A few people have slipped some goodies and of course, I won't turn you done BUT for now we are good. Like I said in a previous post, I froze like crazy a few weeks ago. I appreciate the food but moreso we appreciate your support and acknowledgment. Without all you guys, we would be lonely! :)

As we finish this week, I should gain a lot of new information. Next week is Thanksgiving so not sure how much treatment stuff will be done. I will be home Wednesday, Thursday and Friday, this will be a great time to decompress!

I have struggled with being happy with the results because yesterday our friends lost their husband and son in law to pancreatic stage 4 cancer. He was diagnosed less than a month ago... I'm so happy there are options for Todd but so sad that someone we know lost their rock and loved one in such a short period of time... I can't imagine the pain they are going through but realize that it could be anyone. Life is short... appreciate those around you, love those around, support those around you... even if you don't know how!

Thanks all... will update more this week after dr's appointments!

The Clan....

We are DONE... for today anyways. :)

Whew what a long flippen day! As you know it was to be done at 4 and well.. he didn't start heading that direction until about 6:45. Once he got down there, pre-op, they told me to hang tight for a few minutes... I had enough time to run and get a drink. They had me come back and sit with him while waiting... waiting and more waiting... Apparently, they had a super busy day today and they were way behind. OK, where else do we have to go. The pre-op nurses were wonderful and we all made small talk. We met with so many different people and they went over what their roles were...

Dr. Desjardin came by and reassured Todd about the procedure, held his hand and told him that she will do whats in his best interest. They made a few jokes and she said she would come by or call us in the am (if we were already gone.) Her and I stepped outside (where I got teary eyed... must be her, LOL) and I asked what the best case scenario was. She explained all the types of tumors in her French accent... I got about 1/2 of them. She said best case was a Grade 2 but she thinks its a Grade 3. We discussed that if it was a Grade 3, he was still in the 'good' because it was caught so early and treatment could start right away (within a week, brain has to heal.) She hugged me and wished us well...

After an hour of waiting in pre-op and now 8pm they were ready for him to go... I kissed him through the head thingy, told him it would be ok and headed out to waiting area. Within 30 minutes, they called to say that the first incision had been made. Within the next 30 minutes, I had a call saying he was done and all went well. The lady handed me the phone and he said he was feeling well and very thankful to have the halo off!

I met them back up in our room and within 5 minutes, Dr. Friedman called to say that it is definitely cancer and it appeared to be a Grade 3. We will know more within the next few days. I thanked him and now off we go waiting on our new plan. Dr. Desjardin will give us our plan within the next few days once the full pathology report comes back.

The staff here has been more than excellent. We've had a great trip here and pleased to have chosen this group! They've been very hand-holding.... :)

Since it was done so late, we are sleeping in the room again. I think I will need a massage when I get home to fix my back. The chair hasn't really been too bad but I will look forward to being in my own bed tomorrow.

I think thats it... he wanted food and a soda so I immediately did that. He has 5 holes in his head-4 from the halo and one from the biopsy. 2 needed stitches... They said he might have black eyes so if you see him out just know I didn't do it!!! LOL

I can't thank those enough for everyone who consistently prayed for us today. I had so many people coming out of the woodwork.... it was awesome. I know we have many people that are on our side and it's very reassuring to hear from you all.... A simple text is just enough.

We have a busy road still ahead so I will take many of you all up on food offers, hang tight...

Off to try to sleep.... I've thanked God multiple times today for bringing him back to me... Ty and I need the little sucker! :)

Nite all!!!

KB

Oops, here are a few pics from today!

Still waiting...

Well, we are still waiting... surgery was scheduled for 4 and it is now 4:40. I guess we really have no place to go, I just know he is tired of waiting.

They came and put the halo on at about 12. The Dr who did it asked me to stay in the room... I knew I wasn't up for that type of thing but I did it anyways, LOL. Big mistake. Todd did wonderful. I could tell he was in a bit of pain as he said he was. Once I heard him tell of the pain AND I saw the blood, I got hot, sick to stomach and started to have a panic attack. Whoops, who is the patient now?!?! I went out of the room, got some water and waited outside. Dr. asked me to come back in (he was a funny man so I think he was just trying to lighten me up) and I did... saw the blood and bam.... i thought I was going to pass out cold. Left the room as fast as I could and darted for the exit. I got lost because I went the wrong way... Poor nurse had to help me find my way to fresh air before I dropped over. Funny now... wasn't then!

We've napped this afternoon... Todd was out cold. It's starting to get dark and this day has gone on forever... I'm hoping that the surgery will start soon!

I did take a few pics of the halo which I will post later. I will update as soon as I know something.

Lots of Love!

KB

Morning News..

Hope the news whether it is morning, afternoon or night is all good news.

Just a quick update.... Todd woke up with full speech and no processing 'issues.' So, it must be from swelling and the steroids helped! We are too lazy to get out of bed (and the chair) to see if his writing has improved. I sure hate it for him and us that he will go back on steroids HOWEVER it they help then bring em on!

As always, I will update more when I know more.

Again, THANKS to everyone!!! The support and kind words to and for us have been crazy... We are very lucky to have such a tight knit group (even Hermie.)

Duke Duke Duke... oh Duke

So a bunch has changed since I posted last week... Over the weekend, Todd noticed that he was becoming unstable on his feet, more so than normal, and then on Sunday he noticed that he was having difficulties with his word processing with slurred speech. Todd was worried that if he waited 2 more weeks for a biopsy that things would get worse so I called Duke on Monday and told them what was going on...

The called back at 4:30pm (Monday) and told us they could get us in today (Tuesday). I scrambled to make plans and off we went. Of course in my lingo this is definitely the shortened version, LOL...

We left this morning at 7am, got here around 12ish and we immediately went to go meet Dr. Friedman. From there we went to pre-op stuff and that took F...o...r...e...v...e...r... He was admitted to the hospital at about 5pm and thats where we are now. I am going to stay in the room with him tonight-hope I sleep in this oh so comfy chair. Todd said this is payback from when i made him sleep in one when I had Ty.

As far as tomorrow goes... We were told the biopsy would be done at 4pm however after being admitted, Dr. F's nurse told us that the time was fluid and to plan on somewhere around 2ish. They will come in in the morning and place the halo on his head. She told us that this would be more pain then the actual procedure. They will use shoot him up in 4 spots to numb the area and then the halo will be placed. It goes through the first layer of skin and tissue until it reaches the bone to hold it in place. She told him it would be a great time to take a nap. (Naps, I love naps :) ) The procedure will be done by the Dr drilling a small hole, only one, into a guided area and a needle will be placed into the tissue. Procedure should take less than 1 hour and he will be awake for it. Dr. will know 85% accuracy of what type of tissue we are dealing with when he comes and gets me. The 100% results should come by Monday. After 6 hours and all is going well, we will be dismissed. Not sure what our plans are since I don't know what time it will be when he is released. Currently, they have him hooked to an IV to give large doses of steriods to minimize any swelling, if any...

Ty with friends, Dogs are being watched by neighbor.... All is well on the home front. We so appreciate all those who have called, texted, emailed and so forth... I will definitely take people up on stuff once we get home and settled.

Both of us are calm, cool and collected tonight... I might be a bit more jittery tomorrow however I know that Todd is more anxious to hear the results then the actual procedure. I will update tomorrow once I know more.

Night all...

The Clan

Duke Visit

Yesterday we had Todd's Duke visit and we learned more that what we planned. We knew we had some major topics of discussion to cover but we definitely got more that what we asked for. Dr. Desjardin sat with us and we went over all the positives since Todd's last visit-eyebrow movement, wiggling toes and a stable stem tumor. Then she dove right in... She said "so I guess you know about the 2 new tumors." Rewind... what??? 2??? We said no (as I can feel the tears whelping up) and she proceeded to pull the scan up on the monitor and show us that we are now dealing with TWO! I am not really sure how the Knox Dr's failed to see the second one because to me it was pretty noticeable.

So.. I think she said 2 and sure enough she did... She placed the September scan and the November scan side by side and in September there was NO evidence of new tumors. She used the words 'aggressive' and 'enhancing' in the same sentence so she meant business. Dr. D told us that with the tumors making this much of a change in 1 1/2 months that 'we' will have to act immediately.

So.. Immediately means that Todd will be having biopsy done on November 21st (2 1/2 weeks away.) He will need to be there on Sunday afternoon for 'prep' stuff, procedure on Monday and home on either Tuesday or Wednesday. She stated that they will have him up and trying to walk on Monday and he will more than likely be released. He will need to stay in the 'area' aka. hotel Monday night and depending on how he does and heals, we can come home either Tuesday or Wednesday.

I asked about the biopsy and the nurse said that it would be done by Allan Friedman who is the 'top dog' of Dukes Neurosurgery department. It will consist of them drilling a few small holes in the back of his skull and inserting a needle into the brain to retrieve the tissue cells. She said the actual procedure is done in less than an hour. From there, we should have actual results in what type of cancer we are dealing with within a day or so.

From there, he will undergo an intense chemotherapy and start radiation on the new spots. HOPEFULLY, the new radiation can be performed here. Duke is looking into who they would recommend here in Knoxville.

I failed to mention that one of the tumors is close to the brain stem (probably not removable) and the other is farther away. This one is possibly the best candidate for removal HOWEVER if they remove then treatment can't be done for 4-6 weeks. So.. the plan for now is to biopsy and treat!

There is a silver lining is all of this. Dr. Desjardins said that once we get a tissue sample, we will know exactly what we are dealing with... this includes the brain stem. She said it appears that they are all the same 'type' of tumor. With a proper diagnosis, we might be able to properly treat the brain stem area as well. Crazy to be a little bit excited but it does give us a little bit more hope!

Tyler... Tyler was anxious to hear the results. We met up with our friends who had Tyler for dinner. We told him we would talk when we got in the car. Not 30 seconds into being in the car did he ask about the scan. We paused... and explained that there were 2 more tumors, a biopsy would be done (asked if he knew what a biopsy consisted of, he did) and that Daddy would start radiation and chemo again. He asked 'adult' questions like: is this the same type of cancer as the brain stem, would daddy have to go back to Jacksonville for radiation or could it be done here and pill or IV type of chemo. Love him... I told him that I would need my crazy partner back for the next few months and that Daddy would need extra help at home-he agreed. We even put all of our hands in a 'team' pile... The 3 of us can accomplish this together! He is a trooper and I'm not sure what I would do without him!!!

I stopped by school and spoke with his Guidance Counselor this morning and she said she would stop by more frequently. She told me that for an 11 yr he is very mature for the cancer conversation. She then said for everything else, he is a crazy 11 year old, LOL....

We are so gracious of everyone who texted, called, stopped by!!! I have a list of people that I know I can call on a drop of a dime and I WILL take those of you up on dinners who offered over the next few weeks-even the frozen dinners (<---for my neighbor, Tiffany!)

I think that's it... I'm sure I'm leaving something off but I can always update later.

Thanks guys and please continue to keep us in your prayers!

The Clan...

The Scan results are in...

As many of you know, we have a scheduled trip to Duke on this Thursday. Before Todd goes to Duke, he has a scan done and we bring the copy with us so Dr. Desjardins can read it... Todd's scan was on Monday at 8 and by 10:30 I had received a phone call from the Knox Dr.-Dr. Avery. He asked if I had a moment to talk or if he should call Todd himself. My heart sank...

Dr. Avery informed me that the tumor was stable BUT they have discovered another tumor in his cerebellum. He said that this could possibly be a result from the radiation (have a hard time believing that since radiation was 3 years ago,) and that he wanted to let me know before we were told at Duke.

I hung up the phone, composed my self (the best I could) and called Todd...He took the news like a champ. I think he was really only being strong for me since I was in almost breakdown mode. I called my 2 trusty go-to people (mom didn't answer) and then I sat on the curb outside and cried. Todd called me back and said that this could possibly be a blessing in disguise because now maybe they can biopsy it or possibly remove it. We could possibly move mountains with a tissue sample which in turn could help with the other beast.

So I really don't understand but I don't think I am suppose to. My heart aches and I almost can't get weepy anymore. I finished out Monday at work because I knew that being at work was better than being at home and I had to get myself together so we could have a good night trick or treating...

I opted to take a 1/2 day yesterday and we just hung out together. Nothing exciting and we really didn't talk about life. We received and email from Dr. Desjardin stating she would look at the scan when we came on Thursday. She assured us that she would do whatever is best and that we were 'safe' with her. She also stated that sometimes radiologist techs see something that is really nothing... so there is hope.

Today I put my big girl britches on and dried my eyes. We are up for any challenge and will fight it head on...Tomorrow is a new day with lots of new information. We will take it and make a plan. We like 'plans' and will do whatever is necessary!

Many people this week have asked about Tyler... We have not said anything to him since we don't know any real news. I had a hard time not talking to him last night as we drove to the store. He truly is my rock that keeps this all in perspective. He was a trooper with me when this all began 5 years ago and I know he will be a troooper again! We are fortunate that he is not a child that worries. He is a go with the flow type of kid, kinda like me. :) I know whatever we tell him, he will digest it in his own way.

Anywho... we are leaving tonight to start our journey to Duke. Ty is staying with our family friends and they are also helping with the dogs. We will be back later tomorrow evening.

We will take any prayers, well wishes, encourgement or anything else you want to throw our way. :) I will update when I know more!!!

The Clan...

Oops, thought I would mention that Todd's mom will be starting another round of chemo next week as she found out last month that her tumor markers have increased. Also, a coworker of Todds (Mary White's) son in law was diagnosed with stage 4 pancreatic cancer and is only expected to live 4-6 months. He is a 30 yr old ish man with a wife and child. It's been a crazy cancer talking week at my house so please add these people to your prayers.

October Update

Nothing too new and exciting for the month of October. We stayed so busy with Tyler this month that I feel the month as FLOWN by... I'm in complete amazement that this week is November. It seems that as soon as Halloween hits, we are looking at Thanksgiving and sure enough Christmas is smacking us in the face.

It's sad because I seem to dread the hoopla of all the planning but I love spending the time with the family and off work. I *think* I even asked if we had to put a Christmas tree up this year and that is not like me at all... I definitely don't go all out but I do like to have a tree up and few decorations. With Todd being home, maybe I can get him to help with the tree more. HINT HINT... This is the first real year that Santa has been exposed. I think this will make planning and shopping much easier because we can buy from us and not us and SANTA. Deep down though, it makes me sad that we have passed the excitement of the Santa days. Oh well.... life moves on.

I said this would be an October update so sorry to get off topic...

All of Todd's labs this month have been stable. He struggled in September and October with getting his Chemo refilled in a timely manner and thus resulting in tiredness and a icky stomach. Funny that being off the chemo gives him an icky belly... Can't win for losing..

Fortunately, he has some amazing nausea medicine and a supportive wife... LOL... to allow him to take it easy those days. I could care less if he sleeps on the couch all day (well, not every day.) I have to give him huge PRAISE because he is doing very well as a 'house' dad. He does what he can do in a day and when he gets tired, he rests.

He has stayed busy taxi-ing Ty around as usual. Ty played baseball anywhere from 2-3 days a week and had guitar lessons. Ty also went to a 'cowboy' camp through boy scouts... I have to give a shout out to this Non-profit organization that works with children with all different types of backgrounds.... Southern Star Shining Ranch. Ty went with a few of his boy scouts and he said it was one of the best times of his life. They slept in a barn over the horses, had a horse to tend to all weekend, sat around campfires, did small group bible study and he did calf wrestling. Yes.. calf wrestling. He came home filthy, tired and super excited about his weekend! Of course, here are some pics.

Lots of horseback riding...

Day one of calf wrestling (below)

Yes... that is my 70lb son trying to bring down a 200lb calf. On the pic above, he is under the calf.

Looks like a guy who has worked hard....

We also took a short trip to Myrtle Beach for fall Break... The weather was beautiful and we enjoyed a family trip with some down time. Todd hadn't been to the beach this year so that was on his 'list'. We didn't spend much time on the beach but he said just seeing it and listening to the waves made him happy. Tyler enjoyed time playing and being a kid...

Don't ask about the hat and sometimes you just have to pick and choose your battles... :)

We did baseball, baseball and more baseball for the month of October. Tyler had a wonderful time on a losing team... They won their very last game and pretty much got smoked on all the other games. I kept asking him if he had fun and he said yes so I guess it was still a success. In addition, I met several great families and reconnected with other families Ty played ball with in years past. In fact, Ty is going to play basketball this month and most of the baseball boys will be on the same team. :) This is Ty's first go at basketball so this should be interesting, LOL...

I love love love this picture... <3

Yes, the kid next to Tyler is in the same age range...

The Sox... missing the Coach. The is after the last game that they won by 1. A nice way to end the season. A great group of boys!!!

Lastly to wrap up the month, we celebrated Halloween. As many of you know, our neighborhood does a huge extravaganza and there are 100's of kiddos begging for candy. I love the neighborhood fellowship and Todd hands out candy. Him and another dad, propped themselves in lawn chairs and gawked at costumes (and I think made fun of people because you know, they come out of the hills on halloween.) If you remember, Ty was a BANANA last year so to continue on with the goofiness, this year he was Ollie the Ostrich. Many people thought he was riding a turkey but he was really riding an Ostrich.. haha...

Thanks again for everyone's well wishes and support... Live sure is crazy sometimes.

KB

Family and such

So... I was raised in a very traditional family for most of my life and so was Todd. I say most of my life because my parents divorced when I was 18. Todd's parents are still together and have been for 43 years (can you say WOW.) I say all this because it seems there are more and more nontraditional families these days. So on this topic, I am pretty sheltered from the real world and I think Ty is too. As my work peeps say.. I'm a pretty straightforward realist to life. I call it like I see it. Well... I have been hit with a stick on the nontraditional family topic.

Family is not what it used to be. Who says a family has to consist of a Mom and a Dad? Some families have moms, some have just dads, some have only aunts and uncles and some have grandparents. And you know... there are some families that are so blended that you really don't know who is who.

I think we all need to take a quick look around at who we call family and embrace them. It really doesn't matter how they came into our lives but just that they are in our lives. Everyone, especially children, need a safe place to call 'home.' Also, if you know someone who has taken on others, take a moment to thank them because without them... who knows where those little people would be!

I found this quote while looking for something else but I thought it was cute to share:

The family. We were a strange little band of characters trudging through life sharing diseases and toothpaste, coveting one another's desserts, hiding shampoo, borrowing money, locking each other out of our rooms, inflicting pain and kissing to heal it in the same instant, loving, laughing, defending, and trying to figure out the common thread that bound us all together. ~Erma Bombeck