Thursday, October 30, 2008

10 hours, one spinal tap and the first of 60 weeks of Chemo update...

Thank you to everyone who e-mailed, called or left comments on my MySpace and Facebook to check in last night. I am sorry I haven't updated before this but I was exhausted last night and just wasn't awake enough to post anything.

So, we got to the hospital at 7 yesterday morning. We were scheduled for a 9AM spinal tap procedure. I wasn't thinking on our way in and was hoping that they could access his mediport while he was under. When I got there they reminded me that he needed to have the anesthesia for the procedure and that the Drs would administer that through the port. I got the Emla cream out to put on the site to numb it and we waited about 1/2 an hour for it to take effect. I really think the anxiety of the port access is worse than the access itself. We have to hold Mike still so they can put the needle in the port and I think he hates being held down so much that it just makes the access worse. Anyway, after they got the port accessed we went to the playroom. He was running and playing and then they came in to get him. We went to the procedure suite and waited there for the nurse to come out and get us. When she did she told Matt and me that we were supposed to come into the procedure room with Mike and hold him while they put him to sleep. I wasn't allowed to do that in Florida and I wasn't allowed to do that for the surgery last week b/c they had to intubate him so I was not too thrilled with that but in I went with Mike in my arms yelling and crying. When we got in the room he was still screaming and the anesthesiologist started talking to us. We signed the consent for the anesthesia and she started pushing this milky white stuff (prophephol (sp??) into the tube connected to the port. Before she even got 2 ccs in him he was quiet and they told me that I could lay him down! He was zonked in a matter of seconds... I couldn't believe it! The procedure lasted about 10 minutes and they came out and told us that he was fine and in the post-procedure room recovering. The nurse brought a sleeping Mike out a few minutes later and we were on our way to the day hospital bed area.

We got to the bed area around 10 in the morning and he woke up like he had never slept at 10:15!! At 11:30 the Dr came in to talk to us about the chemo and to have me sign the consent form for the protocol of chemo that Mike will be on. It will be 62 weeks in total as long as this chemo seems to be working, the side effects aren't too bad and his blood counts stay on track. If any of that doesn't happen then the chemo will be longer and might have to be changed. So, after we signed the consent for the chemo the Dr had to order it. The nurse came in to talk to us and she was lovely! We are very happy with all of the nurses there... and our nurse seems so sweet, very informative and is so good with Mike.

Around 12 we went to the playroom and played...and played... and played...until 2 when Mike was so tired and the lunch finally came! He had his eggs and ketchup (or ketchup and eggs as it ends up being! lol) and then at 2:45 he was just so tired that I climbed into the hospital bed with him and held him. He fell asleep around 3 and then at 3:15 the nurse came in. She talked to Matt and me about the meds she was putting in the IV. The first was the Zofran, an anti-nausea medication. That dripped for about 25 minutes. Then she came in with the first chemo medication, VinCristine. It is a very small dose but as she put it, 'It's small but very powerful' and to that I said, 'just like Mike'. She got ready to put it in the tube and I found myself crying. I was just so overwhelmed and didn't know how to feel that I just cried. My 2 year old was then officially on chemo. She pushed the syringe of meds into the iv line and then hooked up the 2nd medication, Carboplatin. That dripped for about an hour and then she flushed the line and put some heparin in the mediport so that a clot doesn't develop and prevent the use of the mediport. Thankfully, there was no allergic reaction to any of the meds and he tolerated the first dose just fine.

We were finally able to leave around 5 pm. Of course, that was prime rush hour traffic time but we were just so glad to get out of there we didn't care. Mike watched his DVDs in the car. He was laughing and talking the whole trip!! When we got back to my mom's he was running and playing with Katie and my sisters until bedtime!!

He is such a strong kid. I am so proud of how great he did yesterday. It is amazing to see all of the kids there going through so much with smiles on their faces. It was Matt's first time being at the Pediatric Day Hospital at Sloan Kettering and he didn't realize how hard it is to go there. He was quite overwhelmed. No matter how cheerful and fun they try to make it, it's a children's cancer facility and there is no way to get away from that. I think it is just a testament to the people that work there to have the kids go in and have fun, laugh and smile while they are there.

Anyway, 10 hours, one spinal tap and the first of 60 weeks of chemo is done. I am off to make breakfast for my tough guy. Thank you again for the prayers and love and support. We hope you are all doing well...

Love to you all...


Tuesday, October 28, 2008

Spinal tap and chemo

The scheduling office at Sloan called and told me that we need to be in at 7 am tomorrow for a 9 am spinal tap/lumbar puncture. We then have a 9:45 appt in the Pediatric Day Hospital bed area for the 'before you start chemo talk' and then they will administer the first round of chemo.
Of course, since they are going to 'knock him out' for the procedure he can't have anything to eat or drink after midnight so tomorrow morning is going to be yet another tough morning for us. Matt is still up here so it will be good for him to be able to come with me so that he can meet the Dr and see where Mike and I will be going every week.
Thank you all so much for your prayers and good thoughts. Please keep them coming! I will update you all when we get home tomorrow.


Thursday, October 23, 2008

Update on today

Well, the surgery went well. Mike is home and ok. Definitely not himself. He is uncomfortable, not in pain but uncomfortable. :( I hate seeing him like that. I will be up all night because he is breathing loudly from the suctioning and the intubation (sp?) from the surgery.

The right side of the body was preferable for the port placement but since the VP shunt is threaded down that side they had to place it in the left side. They also did a neuro-physiological nerve conduction study on Mike. They did it in the OR after the port was placed. That was done so that the Drs will have a baseline for how Mike's nerve function is before chemo is started.

It is so insane to be planning and going to all of these appointments so that we know where Mike is now and we can make sure that the chemo that will be given to him to stop and hopefully, God willing, shrink the tumors doesn't cause any regression in any other parts of his body. We have gone through a speech eval, hearing test, eye exam, neuro-pathology, OT and PT. All of those things can be affected by the chemo that he will be getting.

And speaking of the chemo, nope, it didn't happen today. They came in as we were in the OR holding area to tell us that we wouldn't be doing it today. It turns out that since they don't know what kind of tumor this is (which still blows my mind that it is 2008 and all the neuro-pathologists can't figure this out) they don't really know if the chemo he will be getting is going to do its job. In order to monitor more closely and more definitively they need to check the cerebral spinal fluid. Which means a spinal tap will have to be done. Unfortunately many spinal taps will have to be done. On top of the MRIs every 3 months Mike will have to have a spinal tap done to monitor the levels of tumor cells and proteins in the CSF. If the proteins go down, the chemo is working. If the proteins go up, it isn't and we have to change the protocol. If they stay the same it could go either way.

So, on Wednesday we will go back to Sloan for a baseline spinal tap and to start the chemo treatments. I am glad it will be on Wednesday. Matt will be up here and the primary Dr on our case is the Dr on that day. I think it is important for Matt to be able to meet the Dr and to come to the place that Mike and I will be every week for the next 64 weeks.

Well, I have been up since 4 this morning and I am exhausted and drained so I am going to try to get some sleep. Even if I just lay here and listen to him breathe at least it will be down time, right??

Thank you all so much again for all of your prayers. Please keep them coming...


Wednesday, October 22, 2008

Letting it all my own way...

This blog has been great for me but I tend to hold back how I feel. I put the updates out there and let a little out but I am not one to 'let it all out for the world to see'. So I tend to have my breakdowns in the shower where no one can hear me cry over the water running and the radio on. It's the only time of day that I can acknowledge the fact that I am a human, not the robot I feel like I am during the day to day routine and that my new reality is that I am a mom of a 2 year old with brain cancer. (By the way, that sucked writing that... it took me an hour to get it down... I haven't ever written that before...)

It's so hard when you have to hold it together for the kids, Matt and everyone else. So, I take my 10 minute shower, wash my hair and cry it out for the day. That is my time to be a mom of a kid with cancer who is petrified of the road ahead of her little guy, her daughter, herself and their family. The shower is where I get it out. It's easier that way, if I don't cry in front of people they can't cry in front of me. And I can't have anyone crying in front of me because then that brings it all out and I am just so afraid once I start I just won't stop for days.

Mike is such a strong, tough kid. He really is amazing. Through all of this he plays and laughs and just smiles. And boy, does that smile just melt me into a puddle. But, for as much of a softie little mush that he can be, he is tough. He fights and screams and yells and I let him. He needs that fight. No one can take that fight out of him and I am so glad he has that spunk. The ophthalmologist yesterday said he was impressed with his strength and his stubbornness. And the fact that as Mike was kicking and screaming on the table I just kept saying, 'it's ok buddy, you're going to be ok, keep fighting it, just stay strong and keep up the fight' the Dr thought was great... He is so used to parents trying to get their kids to stop fighting and behave... I told him you won't get that with me, we need all the spunk, stubbornness and fight we have in us for the road ahead so why get him to give that up?

Katie is doing great for all that she has been through too. It definitely helps to be up here and at my mom's house. She goes through rough patches of being upset and confused and worried but I try to spend time with her every night after Mike goes to sleep. It is especially hard on the days that we have to go into the hospital because she is then worried all day until she knows we are home. I have referred her to a siblings support program and I am hoping that will help her. I am also looking into enrolling her in Gilda's Club's NoogieLand for kids with family members with cancer so that she can be around other kids who are facing the same fears and worries she is facing. I don't know how to explain all of this to her because, honestly, I don't get it myself.

And while I am saying that, I really, really don't get it. I know, I know... God never gives you more than you can handle. BUT, I've been saying it for 6 weeks now... He certainly is pushing the limit with this one. I feel like I am going to break. I keep praying that I am making the right decisions and doing the right things for my kids but how the hell am I supposed to know what I am doing. It is absolutely in-f*cking human to have to admit your child to a cancer care hospital. I look at these kids while I am waiting for the appointments with Mike and they are all laughing and playing and running around. They are amazing, so strong. So much stronger than I would be in their situation. They are going bald or have no hair, the are hooked up to an IV, they have appointment after appointment and they still play and laugh. It's a way of life to them but you can see the worry in the parents' eyes. We all say hello and talk and make polite chit chat, but we are all worried. This is the way of life for so many parents and families. Day after day, week after week we do it. And we do it with all the strength we can muster up to be there for our kids. Like I said, it is inf*ckign human. To watch and wait while the nurses hook these kids up to IV after IV of medication that no one really knows if it will definitely work. To have to wait in a cold waiting room for surgery after surgery to be over only to have to hope and pray the pain meds work during the recovery period so that your child isn't in pain. To get up in the middle of the night and walk over to the crib to make sure he is breathing like you did every night when you first brought them home from the hospital because, now more than ever, you know how fragile and precious life is. To pass out 5 minutes after you put your kids to bed only to wake up 2 hours later and be up for hours on end. To walk around like a zombie from not sleeping. To laugh at those people who put makeup on to bring their kids to school while you realize you are running out with a wet head from a quick 2 minute shower or in your pajama pants again because you fell back to sleep after the alarm went off after being up all night thinking and worrying.

It has been a really tough road so far. I am not going to kid myself and say 'but maybe now it will be easier'. I will say that we have dealt with everything that has come at us and we will deal with everything that is yet to come. I thought that the worst part was having no answers and everything was happening so fast. Unfortunately, the answers we were waiting for are that there are no answers so the fear of the unknown is still out there and that sucks. We have a long way to go but the support system up here is the best. I couldn't ask for a better group of people up here surrounding us. I know that I couldn't do this anywhere else. It is amazing that I can't walk down the street or open an e-mail without words of encouragement and people telling me they are praying for us. I am so grateful for every prayer and good thought that people are sending out for us.

Thank you all for reading this. I am hoping that by me letting this out a little and ranting a bit you will all understand why most of my posts are factual with some feeling but not really letting it all out. I can't face these feelings every day more than once a day. They are all there, they are horrible and I wish that none of you ever have to have them. Like I said, I just pray for the strength to get Mike, Katie and our family through this and to make the best decisions I can for all of us.

Please keep the thoughts and prayers coming. We appreciate them more than you know...


Tuesday, October 21, 2008

Pre-op, Ophthalmology and more

Well, we had our audiology and speech evals yesterday, Monday, at Sloan. When we got there I was told that the pre-op for the port was scheduled for the 29th of October and the port placement surgery was scheduled for the 31st. In all of this craziness the one day I wanted to be more than normal for Katie was Halloween. So, I asked if we could change that day to that Thursday so that I would be home for her and they said they would check and let me know. We had the audiology exam and the speech eval, went back upstairs to the pediatric day hospital, met the nutritionist and headed home. About halfway home the pediatric surgeon's office called me and told met that I had to be in there the next morning, today, Tuesday, for pre-op and they could schedule Mike for surgery on Thursday. I called Matt to run it by him and we decided to make it a go.
So, that brings us to today. We got in there for a 9 o'clock pre-op appt. First Mike got his blood drawn then we had to see the surgical nurse practitioner. She examined Mike then spent a good 30 minutes explaining the port procedure to me while my Dad took Mike out to the playroom so I could hear what she was saying without Mike screaming in the room. After that I was able to play with Mike in the play room and then we had to see the surgeon. That was grueling. He had to examine Mike to see if he could feel any good veins to place the port in and then came the tough part. The testicular edema reared its ugly head again. The surgeon spent quite a few minutes examining Mike and determined that there seems to be testicular hernias in both testicals so he is going to need scrotal surgery between the first and second rounds of chemo. He started to explain the surgery but I told him that if that was 10 weeks away we would discuss it in 5 or 6 weeks because I needed to get through this Thursday's surgery and the start of chemo.
Anyway, after that exam by the surgeon and signing yet another consent form, we were told that Mike still had to get an EKG done for the pre-op but we had a 12 o'clock ophthalmolgy appt so we were off to that first. Thankfully, they put the drops in his eyes first and let him play in the play area of the waiting room. Now, for all those of you who know me, you know I have a thing about eyes. It comes from eye Dr appts every 3 months, 2 years of patching and 2 eye surgeries so the eye Dr appts are not my easiest appts. When Mike's eyes were dilated enough I brought him back to the exam room. Since this was a pediatric ophthalmologist they were prepared. 4 nurses, me and a swaddling sheet. 1 nurse holding his feet and legs, me holding his torso, 1 nurse holding his arms, 1 nurse holding his head still, the eye openers and the Dr himself. Thankfully, that was the best result appt all day. The Dr determined, there is still slight damage to the 6th nerve but the swelling is all gone and he isn't sure if the 6th nerve damage is even going to be permanent! Mike's eye is looking so much better so I am hoping the damage will clear up over time.
So, after the eye appt we had to head for Mike's pre-op EKG. Thankfully we didn't have to wait too long for that and Mike was as good as I could have hoped a 2 year old to be getting 12 leads attached to him! We got a good reading and headed back to the pedi day hospital.
We finally got the all clear for surgery and as we were ready to leave we got the notification that after surgery and recovery time on Thursday Mike will be getting his first dose of chemotherapy.
Now, with all of that clinical stuff out of the way, I am beside myself... I know Mike needs the chemo and I know that this is the road we have to travel to get him better but I am so worried about things. Since no one has been able to identify this tumor are we using the right drugs? How long will it be before we know if the drugs are working? What if we have to switch meds, what will that do to his little body? Will he be ok with the meds? Will the side effects be too much on him? Will I be able to handle all of this with him and still be there for Katie as much as I want to be? I said to my friends this weekend, I cry in the shower and pull myself together for the rest of the day so that I can be there for the kids and that's how it's going to have to be for a while... I know we will all be ok, I have to trust that and believe that.
Again, I thank you all so much for your prayers and good thoughts. We have a long road ahead of us so please, please, please keep them coming...


Friday, October 17, 2008

Un-diagnosis, treatment and more...

Today I went to discuss the un-diagnosis and treatment plan with the neuro-oncologist at Sloan.

First off, I have to say, I really like this Dr. He is so kind, talks to you like you are a human being and is to the point but not harsh about things. I really like that he talks to me like I am not an idiot like some Drs do.

Second, I have never been so overloaded with information in my life. It was like a 2 hour long session of fast talking and information gathering and head spinning. I was glad my mom was there so that I could bounce things off of her on the way home. I have about 5 pages of notes so I am going to give you the 'Reader's Digest' version of things. So, here is the upshot. They have no idea what kind of tumor this is. I asked if they could tell if the nodule in the spine or the coating on the spine was the primary tumor and they can't even tell that. Apparently 3-5% of children's central nervous system tumors are unclassifiable but they usually have something in common with each other. Mike's doesn't fall into that category. He is a rarity of rarities it seems. So, after that part of the conversation the Dr said that he feels that since Mike's eye has not gone back to the normal state and that he seems to be favoring his left side when he walks and does things that chemo is the only way to go at the moment. Radiation is out since the tumor is spread out so much over the spine, CSF and brain and surgery is out for the same reason. So, chemo it is. They will use a low dose of chemo once a week for about a year. There will be a combination of 2 medications administered via iv/medi-port every week. Hopefully, God willing, this will all be able to be done on an outpatient basis and barring any issues he will not be an inpatient during the course of treatment. I am waiting for the call from the hospital to let me know the date that they schedule the surgery to put in the port. We have to go back to the hospital on Monday for an audiogram and speech therapy eval and a nutritionist consult. Then we go on Tuesday also for an ophthalmology appointment, physical therapy appointment and occupational therapy appointment. I will keep you all posted on all of those appointments.

The Dr did say that while high-grade malignancy tumors have their obvious issues, low-grade tumors have their issues as well. It seems that the low-grade tumors have a tendency to come back later on in life even after the treatments done now. So it looks like we will have MRIs done every 3 months during treatment and for the next couple of years after treatment is done. Then we will see how things are progressing and do MRIs as often as necessary after that.

So, I guess that's the 'Reader's Digest' version. I need to send a HUGE thank you to my friend Lisa... the appointment today went so much easier with your amazing idea!! I brought of the the gifts and the Dr gave it to him... it was wonderful! I can't ever thank you enough for being so sweet!

And I want to thank you all so much for reading and keeping us in your thoughts and prayers. We appreciate them more than you know! It seems like this is only the beginning of a very long journey for us so please continue to keep those good thoughts and prayers coming.


Thursday, October 16, 2008

A diagnosis... finally... well, kind of sort of but not really...

Yep, ... the official pathology is back...

Officially, on Sloan's final pathology report, this is an unclassifiable tumor. Apparently, they can't classify/identify it based on the health organization tumor standards. They do know, however, that, under the microscope, this does not look to be a high grade malignant tumor. I am so thankful for that, but so upset and worried that they can't figure out what this is. Since all central nervous system tumors are dangerous the oncologist has told me that they don't classify them malignant or benign, but as high grade malignant and low grade tumors. So, it looks like we are dealing with a low grade tumor. Now, our next step is to figure out how to get rid of this tumor that is in Mike...

So, tomorrow Mike & I have to go into Sloan to talk to the Dr to figure out what we are going to do treatment wise. I will update you all tomorrow when we get back from Manhattan and hopefully we will have some direction to go in treatment wise. I am bringing my mom and my aunt with me. My aunt can take Mike to the play room while Mom and I try to make sense out of all that the Dr is saying so that I can make the most informed decision possible that will be the best for Mike.

Thank you to all of you for being so wonderful! I really appreciate all of the support more than you know. I am sorry that I haven't been great at getting back to you all. I will be posting pics of Mike tonight... he looks great but is still not acting like himself or walking and playing like himself yet. So, pease keep those prayers coming... I will update you all when we get back from Manhattan tomorrow...

Tuesday, October 14, 2008

I was hoping to have news... BUT

no such luck.

I called Sloan this morning only to find out that there is STILL no final pathology report back! This is so frustrating. It has been just about 4 weeks since this whole thing started and we still have no answers or plan.

And then to add to the frustration, Mike's stitches were starting to absorb and his hair is starting to grow back in the spots that they had to shave for the surgery so he was itchy. As he went to scratch I said, 'Mike no hair' but before I could get it out, there was blood. He ended up scratching out 2 stitches! Thankfully, I was able to get the nurse at Sloan on the phone and they said that since the stitches have been in there for 2 weeks and that his head wasn't bleeding it would be ok.

Katie had her school book fair today. My aunt came over to stay w/ Mike so I could go since parents were able to meet the kids there. By the time I left she was in tears b/c she wanted to come home with me. She was crying last night b/c she wants to go home with Daddy and Pugsley. I feel so bad that she is so confused and upset. I have been trying to do things with her to make her feel like all of the attention is not on Mike. I can't wait for Matt to get up here. It isn't until the 25th but it is still in October, right?! I feel like it will have given her enough time to start adjusting to being back here and accepting that this us where we are for now and it will be good for her to see him and spend time with him and hopefully she will be somewhat ok when he has to go back on the 30th. He will pick her up from school and take her out on one of their 'Daddy and Katie dates' and they will get to spend some time together.

I am just so tired. I am nervous, I am stressed, I am worried, I am grasping for any ounce of normalcy in life and I am really not happy that I can't control anything.

Anyway, I am off to get Mike who just woke up from his nap... Hope you are all doing well and that I can get back on here and let you all know that we have finally gotten some news soon!

Please continue to keep those prayers coming... we definitely need them!!


Wednesday, October 8, 2008

Still no news...

So I got a call from the neuro-oncologists at Sloan today. They still have no final pathology report! :( They said that they were pretty sure we wouldn't have anything until the beginning of next week and if I didn't hear from them by Tuesday to call them. I hate waiting! I feel like I am so useless just sitting here letting this sh*t stay in him like this.

And to make matters worse, we were up last night from 12 - 5:30. Mike had some sort of stomach bug going on and was sick all night. I called into the Sloan Urgent Care phone line and they said it sounded like a virus and that I should just watch him and let them know how he was during the day. He has been ok. Lazier than usual but after only a few hours of sleep for the past 3 or 4 nights I can't blame him.

Katie started school on Monday. She has settled in really well so far! She has a playdate with her friend K tomorrow after school already too!! :) It is amazing how well she re-adjusted to being in that school. I mean, I know it helps that my mom works there so she does have that security but she just jumped right in getting to know the kids again. She is still really worried about Mike and is upset that I can't walk her to school and come pick her up every day so I have been trying to spend time with her in the evening when she gets home so she feels a little better about things. This weekend she is going to help paint my mom's dining room with mom and my sisters so that should be a fun project for her! :)

Anyway, that's it for today. I am going to sit with Mike on the couch until bedtime. Hope you are all doing well.


Saturday, October 4, 2008

Mike update 10.5.08

So, we got to Memorial Sloan Kettering Cancer Center in Manhattan on Thursday. The pedi neuro-oncologist who is in charge of our case and the neuro-pathologists here have said that whatever type of tumor this is they feel it is going to be a rare one. They are studying the slides from the first surgery on 9/19 and I had to bring up the pathology slides and a frozen section from the surgery on 9/30 so they are studying and analyzing them too. We are still waiting to find out what we are dealing with so that we can figure out how to treat it. It seems that the general consensus is that it will take at least a week before we find out what we are dealing with.

On a HUGE plus, they sent us home last night! Mike is considered 'medically stable' despite the tumor and being diagnosed w/ c-diff (a bacterial infection of the intestines) so instead of keeping us in there where we would really just be waiting and taking antibiotics, we were sent home. He isn't walking all that well, with the massive testicular edema and the spine still healing it's hard for him to get around. Not to mention that he has been laying around for 2 weeks since we couldn't really get up and move attached to IVs and the 'brain drain' (as I call it). He is getting there slowly though. He is super uncomfortable but he is eating like a champ and much more lively and happy being here than he was in the hospital so I am hoping that being home will help him recover so much faster!!

When we got to my mom's last night around 7:45 we surprised Katie! It was so great to see her! She has been so anxious about things and since it was her first night back in NY I know she felt a little better with Mike & me here at my mom's! She starts school on Monday and she is nervous about that so it will be great for me to be here for her when she leaves in the morning and gets home at night!

Thanks so much for all of your prayers and good thoughts! You have all been so supportive and wonderful! I will continue to keep you all updated and please keep praying... we have a long road ahead of us once we get the path results and through all the treatments!



Friday, October 3, 2008

Our first night at Sloan

It was a tough night. We are in isolation since Mike has been having loose bowels. They want to test for c-diff and stuff before they will let us play in the playroom or anything so we are stuck in the room for the next few days.

The IV that he came up from Florida with is in his left hand. He is a thumb sucker and only his left thumb will do so as soon as he moved the IV beeped because he bent the line. That went on about 5 or 6 times before we realized what was causing the occlusion. The ended up putting a board on his left hand so that he didn't bend it but the nurse was good enough to make sure he still had thumb access. That thumb is the only comfort that the kid has and I am damn sure not taking that away from him!

So, after all that craziness last night they decided to put in a new IV in his right arm this morning. He is acting good, his belly isn't as distended so I feel better about that. He still has a massive case of testicular edema but apparently that's normal in kids with new shunts so I am hoping that clears up soon so he is a little more comfortable.

Apparently some of the MRIs w/ contrast didn't transfer over on the discs I had brought up so I had to call down there this morning to make sure we could get that stuff burned and fed-ex'ed up. I just spoke to the neurosurgery PA in Florida and she is going to make sure they are all done and sent up today. We are hoping that once they come up we won't have to do any more MRIs here until after the diagnosis comes in and we start treatment.

We still have no final diagnosis. I am hoping that since I brought up all of the records, the pathology slides from the surgery done on Monday and a frozen piece of the tumor from the spine that the pathology department here can get a diagnosis from all that sooner rather than later.

Thank you all so much for your prayers and good thoughts. Please keep them coming!! Love you all and I will keep updating when I can!


Wednesday, October 1, 2008

Heading to Sloan Kettering in the morning

We just got the word that Sloan will have a bed available for Mike tomorrow. I am so relieved yet so afraid. I am so terrified that the diagnosis is going to come back and it won't be the one we are hoping and praying for.

The transport team will be in our room at 9 AM tomorrow so we are hoping to be at Sloan by mid-afternoon since we have to ambulance to the airport then get on the jet and then ambulance from the airport up there to Sloan.

Please keep your prayers coming that this is a benign tumor and that we get a good prognosis.