Monday, March 28, 2011

Day by day

March 28, 2011: Sy has been back home since Saturday evening. Things haven't been the smoothest but everyone is staying strong and holding it together. Originally the plan was for Sy to be discharged but because of low magnesium levels and not tolerating his medications they kept Sy for an extra day. Now he is home but the medication continues and so does the nausea. Sy is now on an oral chemo drug called Sorahfanib, which he takes daily. With rubber gloves and masks on Matt and Veronica give Sy medication that in the end is supposed to make him better but in the mean time makes him sick. So far side effects are minimal, red palms and feet, no burns or sores yet. His hair is really thin and has a Today he was throwing up a lot, so much that his ng tube came out. Good news is, Sy let a nurse come to the house to put the tube back in instead of having to go back to Stanford. On Thursday Sy will return to Stanford for an oncology appt and physical before retiring for round 3 of the fight on April 12.

Thursday, March 24, 2011

Round 2 day 2

March 24, 2011: day one couldn't have gone any smoother. Day 2 wasn't amazing but compared to round 1 Sy is whooping Cancer's butt. Today he didn't leave his room but he had only thrown up 4 times as of 4:30 pm. He wasn't talking much but he was walking around the room and just overall better then round 1. So proud of my little fighter.

Wednesday, March 23, 2011

The champ is here!

March 23, 2011: so yesterday we got some great news. Sy continues to amaze the doctors and proves he is in for the whole fight. Scans came back and Dr's say the main tumor in his liver has shrunk and the tumors in his lungs have not gotten any bigger! They decided to add 3rd chemo drug to the mix, which has shown results in adults with HCC. The bad part is this drug has worse side effects that can cause painful burns, rashes and sores but Sy has once again proved he us winning round 2 of this fight. Chemo started last night and he had a great day today. No nausea, walked around the hospital, went to the play room several times, kicked ass and took names in monopoly and was on a good mood almost all day (until I forgot the BBQ sauce and ketchup for dinner) ugh! Hopefully just one more day in the hospital and then back home to Salinas.

Tuesday, March 22, 2011

Another day of waiting

March 22, 2011: Sunday morning Sy woke up another year older and noticed his hair falling out. We all new this day was coming, but had to wait and hope it would take longer. How do you explain to a 9 year old that he is going to lose his hair and why? Well Matt was given the burden of explaining to his only son why. Matt said it was very tough as is expected but on e again he found the strength to tell Sy.
Due to bad weather we postponed the AT&T tour till later date. So instead Sy stayed home and celebrated his birthday with Matt and Veronica's family and building his new Deathstar Lego.
Last Friday, They ventured back to the hospital to get tests done before round 2 of chemo. But once again things did not go as planned. After getting an echo test done they waited for hours for a CT scan and an MRI. After waiting several hours they were told to to home because hey weren't going to get to the tests and they would need to return on Monday. So after checking in Monday morning and not allowing Sy to eat again...they waited...and waited. Once again they were sent home with no tests done and told to return again on Tuesday. Luckily they were given a local hotel room and did not have to drive all the way home to Salinas. This brings us to today; scans are being dine right now and they have an appt at 2pm to read the scans. We all prey each day for our Miracle and are thankful for every day we have had with Sy and for every day in the future that God gives us with him. When times are tough and I find myself struggling with my own faith my friend's mom read a prayer from Joshua 1:9 that gave her strength through her grandson's struggle through cancer; have I not commanded? Be strong and courageous. Do not be terrified; do not be discouraged; for the Lord your God will be with you wherever you go.

Please keep the prayers coming and don't forget if you want to help you can visit any Wells Fargo and donate into the special account set up "Sy Matthew Sheeman Cancer Fund."

Sunday, March 20, 2011

Becoming a 9 yr old Jedi

March 20, 2011: Happy Birthday to the strongest kid I know. Today Sy turned 9 years old but not before a family and friend filled Saturday. Yesterday at 2:00pm Sy was baptised at St. Catherines church in Morgan Hill. He did a great job and looked slick in his outfit (provided by his uncle Frank-Godfather). After the baptism we all headed over to Grange Hall to celebrate his birthday with even more family and friends. The place was packed with people and presents. The day included a show from a "mad scientists" a balloon guy, tacos, cake, lots of presents and best of all....Jedi Training for Sy. The smile on his face when this guy showed up was priceless. To end it all he got his own custom lightsaber after successfully training and beating the bad guy in a duel.

Thursday, March 17, 2011

Busy days ahead

March 17, 2011: home for a week and just when things get settled, it is time for things to get going again. Tomorrow Sy has an appt at Luciele Packard for a CT scan and MRI. Scans won't be read until Tuesday and I'm sure the days between will be tough waiting and hoping for a positive change, but thankfully the weekend is full of celebrations. Saturday Sy will be baptized in front of his family and friends. I could be happier to get the honor of being his godmother. Following the baptism Sy's mom's side if the family have arranged a big birthday party to celebrate his 9th birthday. Lots of family and friends will be around to celebrate the day Star Wars style! Sunday, Sy gets a real special treat. A friend of mine was abele to set up a special tour of At&t Park (sf giants) for his bday. I'm pretty sure Matt is just as excited though. With a day to rest, Sy then returns for round 2 of chemo on the 22nd. Please keep the prayers and positive thoughts coming. Share the blog with everyone And thank you to everyone who has been here for all of us through this tough time and to those who have donated to the Sy Matthew Sherman Cancer Fund.

Sunday, March 13, 2011

Home sweet home

So Sy has been home for several days and Matt and Veronica are settling back in and getting into the daily routine and meds. Yesterday they drove out to SF so Sy could throw out the first pitch at the Academy of Art University Softball game for the 2nd Annual Swing for a Cause game where we raised money for UCSF Children's Hospital. At first, Sy wasn't feeling well and didn't want to walk out onto the field to throw the pitch, but thankfully something or someone changed his mind. They announced his name and he threw the ball to me while everyone cheered and was able to see first hand what an amazing kid he is.

Thursday, March 10, 2011

Mr. Monopoly passes go and heads home

March 10, 2011: After nearly three weeks in the hospital Sy got to head home, but not until her wooped some butt in Monopoly. He ran away with the game, owning nearly every property (and we weren't letting him win). I was so proud watching him play and couldn't have been happier seeing him smile and enjoy himself. Matt and Veronica had to meet with the nutritionist and nurses to learn how to use the feed tube etc. It sounded like a lot of information to take in and I am sure they felt overwhelmed with it all but I know they are on top of it. I am sure everyone is very excited to be home and back in their normal environment. Although it is only for about 2 weeks, I am sure it will be very refreshing and they are all happy to be around their friends (especially Sy). So keep the prayers coming while Sy continues his fight from home until round 2 of Chemo on the 22nd. Thank you again for all of the positive thoughts and prayers.

Wednesday, March 9, 2011

Suck it cancer! Round one goes to Sy

March 9, 2011: in the hospital for two weeks and Sy comes out in top. Yesterday Sy went to the play room for 2 hours (longest he has been out of his room since being admitted). After playing some Monopoly, life and with the trains Sy headed back to his room. At 1am Sy held Veronica's hand while trying to go to sleep and asked her, "Vero how do I pray to God?" Through this tough time we all find ourselves asking for help and praying for Sy or asking what we can do to change the circumstances, but when an 8 old asks can't help by cry (At least I did). So Vero told him and together they prayed.
Today, Sy had a great day! He went to school at the hospital for a few hours then came back for lunch and then returned for more school. This was so great to hear! Sy is feeling better getting up and around on his own proving he is the champ in this fight. Then Matt and Vero got the word, they get to go home tomorrow! Sy will get to celebrate his birthday with his friends and family before returning to Lucile Packard for round 2 of chemotherapy. This Saturday Sy will also be throwing out the first pitch at the Academy of Art University Softball game where we will be holding our annual Swing For A Cause game and raising money for Childrens Cancer. So come on out, cheer Sy on and help us raise some money. Don't forget you can also make donations directly to Sy at any Wells Fargo. thank you for the prayers, keep them coming because this fight is not over.

Tuesday, March 8, 2011

How can you help?

As Sy's fight continues we are going to face many obstacles and every bit will help. There are several ways you can help out.
  • Visit any Wells Fargo and make a donation to Sy Matthew Sherman Cancer Fund.
  • Visit then go to donate and put in Sy us raise money for cancer research and join us for the San Francisco May 14th walk.
  • Bring dinner to Matt, Veronica and Sy for any nights they are at the hospital.
  • Have someone clean their house for when Sy comes home so he has a clean environment.
  • Send your prayers and positive thoughts.
Sy's birthday is also less then 2 weeks away and we want to make it a great one so anything you can do to make it a memorable 9th birthday for him would be amazing!

Sunday, March 6, 2011

Thank you antibiotics!

March 6, 2011: The past few days have been great. Thanks to some antibiotics the Doctors and nurses have been able to get Sy's ammonia levels down to 51! Yesterday he was sitting up, eating ice cream and even got out of bed to sit a little for a little while on the couch. Today Sy had more of course but his best friend Junior from school and his family came to visit. Junior brought Sy some pictures and letters from his friend's at school and they played some checkers and laughed. The hospital also got a visit from Build-A-Bear. Sy was able to walk down the hall way to a room where he got to pick out a bear and pick an outfit out for him. His bear was black with guitars on him and a green mohawk. (I would have picked the same on). This bear was extra cool, you could plug your ipod into it and there is a speaker in his foot. He then picked a football outfit out for him...which was fitting considering his next visitor was former 49er Jamie Williams. They chatted a little bit about Indiana Jones, Disneyland and Spiderman. As soon as the hospital can figure out exactly what it is going to take to keep Sy's ammonia levels in control he should get to go home for a few weeks before he returns for round 2 of chemo. Fingers crossed he gets to go home soon, his birthday is in 14 days and we plan on doing it up big!

The last few days have been very nice and I am looking forward to many more nice days with my amazing nephew.

Friday, March 4, 2011

It is darkest before the dawn

March 4, 2011: yesterday was bad...and today has been a 180. Doctors were able to get his ammonia level from 175 to 71 and made the biggest difference. He is no longer yelling at everyone and scaring the nurses. As we (matt, veronica, auntie jill, uncle chris and myself) sit here we watch sponge bob and eat chicken nuggets. We are rehatching stories about driving in freeways, Mario crank calling me and family guy episodes. Doctors continue to be amazed with Sy, as am I. He has been a medical mystery already by being in the 1% of kids who get HCC and 1 of 2 kids in the world to have the metabolic deficiency and he is going to be one of the few to beat this! On his second order of nuggets and spaghetti on the way he is gaining strength and ready to continue the fight. I love this kid so much! And days like this make me remember why that is.

Day 11 over all= roughest day

March 3, 2011. First time in 11 days I wasn't at the hospital. Don't know which is harder...being there or being away. Matt said it was a really bad night and bad day. Sy's ammonia levels are off the chart which means his liver isn't converting it. So they are trying to get that down but in the process had to calm Sy down. Right now Sy is spending too much energy fighting the Drs and nurses and needs to fight the cancer. If only he understood how important this is.
      Doctors came in and told Matt they know what caused the HCC. Apparently he has a metobolic disorder (found in only one other child in the world). Sy was referred to as a medical mystery. Doctors are still confused and baffled how Sy is still functioning- ammonia levels this high should have put him in a coma and his liver is still functioning otherwise but the body isn't breaking down enzymes correctly and the ammonia is left in the Matt's words, "I hate science."
      All this tells me is his body is fighting and giving the doctors plenty of time to figure out this "medical mystery!" So hurry up and get my super hero home! CANCER SUCKS!!!!!!!

Wednesday, March 2, 2011

Day 2

March 2, 2011. As I sit in Sy's room my heart continues to break.  He sleeps on and off waking up scared. Poor guy is scared of the medicine and the doctors, I don't blame him. Round one of chemo is over and now a huge bag of saline hangs on "Betty" to rehydrate him. The chemo in his system is still making him throw up but he manages to fall back asleep between.
     Matt, Veronica and I sit here listening to one of Sy's favorite songs "Hey there Delila" and talking about all the funny things Sy has said. Just the other day, Matt was asking Sy if he wanted to shave his head and Sy's response was classic, "What if it doesn't grow back like Uncle Brian's?" When Sy asked Matt what was in his stomach it turned into a video game discussion. When all said and done, Sy is Mario, Matt is Luigi, Veronica is Princess and the tumor is a mushroom. LET THE GAMES BEGIN!

Tuesday, March 1, 2011

Sy showing off his moves a few years ago

Day 1

March 1, 2011 Sy started his chemo at 6am today. He has been able to sleep through most of it until those dang nurses come in to take his vitals. He has scared one of his nurses away from fighting him, so hopefully he is fighting the cancer as much as he is fighting the nurses. So far the chemo hasn't effected him too much. He did throw up today but at the same time he has also gotten himself up and out of bed and walked to the bathroom several times. This may seem like routine, but if you had seen Sy all week, he did everything he could to stay in bed. And when he did get out of it, he made Matt pick him up and use a wheel chair to take him around the hospital. So you can see this is BIG. I know he wants to get better and get home to his family and friends. Sy's chemo will go for 24 hours (2 drugs) then hopefully be home next week.

Feb. 28th

Last pathology report came in at about 6pm. Doctors are now 100% sure it is HCC. Scary enough there was a worse option. So now since they are sure what we are working against here, the battle begins. Sy needs to be completely hydrated before each chemo session so it didn't look like he was gonna get started till after midnight. With a long night ahead of him he was able to rest most of the day. I cannot imagine what Sy is thinking or feeling. Our family is so scared. The amount of feelings and different emotions one person can feel in a matter of 5 days is outrageous! My brother Matt has been amazing through this, holding it together in front of Sy to keep him from being scared. My dad referred to Sy as MR 5% today, I think it is fitting, because that's exactly what he is, he will be in the 5%, he will get better and be even stronger when this is all over.