7 Years Ago We Started a Journey

It have been a long time since we have posted, and no news is good news. 7 years ago today Drew was diagnosed with eye cancer. It has been a whirlwind since that day. It is hard to believe now the craziness of the journey and the paths we were taken down. We feel very blessed today, because he is cancer free for two years. We cannot thank all our family, friends, doctors and nurses enough for helping us get here. There are many moments where we didn't see the finish line, but hopefully we are near crossing it. We will return to St. Jude in March to do a check up. Drew will not be considered cancer free until 5 years from treatment. We are almost half way there - Aug 2016 is our goal. Thank you to everyone who supported us and continues to support us on this journey. We couldn't do it without you!!

6 Years, WOW!

Six years ago this past Saturday, our lives changed forever. Heidi and I will never forget 11/17 as this date is burned in our memory. While it sure has had its ups and downs, we are knocking on the door of two years cancer free (did you catch that I said knocking). :-) We are excited about continuing on this high. Speaking of milestones, tonight was a heck of a milestone for me.......Drew had his first homework assignment in braille. He sat down, cracked his fingers like he was going to play the piano and said out loud "I can go for a ride!" While it's was basic, it was AWESOME....HE WAS READING WITH HIS FINGERS! The best part, I have no clue if he was right so really, he's teaching me! While he can read with his eyes, Heidi and I wanted him to go down this path, just in case and it's amazing to get a small peek into this world! We are so proud of his ability to learn to read both ways. Anyway, all is well on this front and we continue to knock on wood that it stays that way. Happy Thanksgiving to all and wishing you the best holiday season. Be sure to check out the Today show this week, you'll see a few St. Jude spots. Believe me, we are truely Thankful for them getting us to this place!

No News is Good News

Sorry we have not posted in a while, but no news is good news. Drew is doing well, and still cancer free. We will go back in June for another check. This time Jack will join us, so he gets a chance to see St. Jude for himself. For you that are not aware, we are now seeing some residue affects of being a sibling of a cancer child. We are working with the psychologist to help Jack out with this feelings. Drew is about to finish his first year at school and is working on learning braille. This is part of helping Drew learn better with limited vision. It is quite inspiring to watch him learn this. We hope to post good news again in June.

Finally a Year, WOW!

We're excited to report that with the recent trip to St. Jude about a 2 weeks ago, Drew finally has made it a year with NO CANCER! We can't tell you how excited we are. Our next goal is 2 years, knock on wood! Thanks for your continued support, we go back at the end of March.

Early Christmas Present

Drew was at St. Jude last week and all his tumors are quiet. He did not need to treat, we will go back in 8 weeks for another check-up. Only area of concern is the retina detached slightly. Dr. Wilson said Drew’s body is taking care of it by building scar tissue around it. The scar tissue is tugging on the retina, so he just needs to be careful. If the retina detaches we could have a bigger problem with the vision. They can reattach it, but it would be critical that we catch it immediately. Long and short – not tackling or wrestling with his brother.

5 Years Today

Five years ago today, we sat in an optomologists office, getting Drew's life changing news. It has been a long 5 years of highs and lows. We want to take a minute to thank all the doctors, nurses, family, friends, co-workers and everyone else who have support us throughout the journey. Drew is currently 9 months cancer free. Let's hope it continues!!! THANK YOU FOR ALL YOUR SUPPORT!!!!

Another Milestone Hit!

Received a great call from Heidi 30 minutes ago and I’m happy to report Drew is still cancer free. Dr. Wilson only needed about 10 minutes to know that there was nothing to be concerned about. The areas he had been watching in the last two visits, he’s pretty confident are scar tissue. This is another milestone for us in a couple ways, first, we are extending our longest streak of being cancer free (going into 9 mos) and second, this is the first time in almost a year we haven’t used any form of treatment (laser/freezing). We are knocking on wood right now and only hope this continues. We head back to St. Jude the week after Thanksgiving. Thanks for your continued support, it means the world to us!

A Small Look into Drew's World

This video was put together as part of the Fall Festival of Hope for St. Jude. Drew was the spot light kid and we spoke at the event. This video was shown before our speech.

http://www.youtube.com/watch?v=i4bQiK4vbAQ

First Ever Milestone

We are down here at St. Jude and received news that we have been waiting 5 years for, Drew has gone 7months without hearing the words "it's back.". Drew just got out of his exam and the spot they treated last time, they treated again as a precaution. Dr. Wilson treated it because he doesn't want to find out months from now that he should have. He thinks that it probably is a scar but with drew's history, he didn't want to leave it to chance. Thanks for your continued support, 7 months wouldn't have happened without it!

We head back in 6 weeks. Drew will truly be able to enjoy his first few weeks of kindergarten, which starts next week!

Latest St. Jude Update from 2 Weeks Ago

Sorry for the delay in our post.......should have put out there 2 weeks ago!

Just received a call from Heidi on Drew's St. Jude Trip. Dr. Wilson was a little concerned about a "change" in the blood vessels close to the area where Drew had his Radiation Plaque placed a year and a half ago. This "change" could be a few different things but only time will tell what it really is. Here is the list of things is could be:

• Nothing


• Tumor Growth


• Residual damage fromt he plaque treatment

As a precaution, Dr. Wilson applied the laser. We'll go back in 6 weeks and will know more then. He indicated that he treated it because he didn't want to find out 6 weeks from now this it was a growth and he elected not to treat on the previous trip.

So, long story short, still cancer free........we think! :-)

Time to Fly 2011, Team Drew

What can you say one say to a team that raised over 22k to help fight pediatric cancer? Nothing but THANK YOU! Our whole family is humbled by the support year after year. Because of you, we are able to take one small step towards a cure or at the very least advancement! How AWESOME is that! Here's a little video from the day of the run.......Thanks so much!

Drew's down at St. Jude right now......we'll update the blog when we get his report card back tomorrow.

Building Momentum

Received a good call from Heidi that Drew's eye exam under anasthesia went well today. NO TUMORS! Dr. Wilson lasered the area where the tumor was previously but really it was only because that's the new routine. Very happy with the news but we are still cautiously optimistic! Because Dr. Wilson is traveling we'll head back in 5 weeks. We're hoping that we'll have a good report card right before Time to Fly! Your continued support has been great, THANK YOU!

Baby Steps in the Right Direction

Drews tumor regressed again. Dr. Wilson indicated it is smooth around the edges which is a good sign. After 4 1/2 years we will take the good news where we can get it. I will return with Drew in 4 weeks, for another treatment and look. Cross your fingers! Thank you for your continued support and prayers!

So Far, Good News

Just heard from Heidi down at St. Jude. The tumor they are worried about did regress. It's still there but it's smaller than last time! What does that mean???? They'll use the laser again and will continue to until it's gone or it changes otherwise.......I'll head back in 2.5 weeks and it sounds like we'll be on that schedule for a good while. Doctor says baby steps. Good news for now! Thanks for your continued support.

Uncharted Waters

Thought we would let everyone know we were able to make a decision about Drew and a go forward strategy. Dr. Neglia called us from the airport yesterday and we discussed where we were at with his case. He had already spoken with Dr. Wilson (St. Judes) a couple of times. The tumor is closer to the optic nerve, so it is a possibility it will affect the optic nerve and therefore the vision. Our options are limited but here is what was on the table:

1) External beam radiation. This would be a 5 week treatment, five days a week. Drew falls into the category of hereditary bilateral retinoblastoma - this does not mean it came from someone in the family. Hereditary means his gene mutation indicates he has the ability to pass it on to his kids some day. Due to being in this category, he has a 28-50% of secondary cancer from radiation.

2) IA in New York. This procedure puts him under and send the chemo directly to the tumor through the optic nerve. Treatment would be once a month for 1-6 months. It has only been done since 1996, so we are not aware of the long-term impacts of the treatment. They don't believe there is a high risk of secondary cancer, however, a higher risk of lose of vision.

3) Remove the eye. This would be a last resort if we can't figure something else out.

4) Replace a radiation plaque. They would sew a radioactive plaque the size of a nickel inside the eye to the affect area. The plaque remains on for 5 days, and is removed. At first they did not think this was possible, due to the closeness to the optic nerve. Dr. Merchant and Dr. Wilson at St. Judes have done additional measuring and feel this is possibility. The theory of why it didn't work the first time, because the radiation may not have gone through the entire tumor. They can rotate the plaque 180 to get the active area. There is a 5-20% chance of partial damage to the vision, due to radiation reaching the optic nerve. The cumulative affect of this treatment in with all others means a 5-10% of secondary cancer. The doctors think more on the 5% side.

Tony and I have had many discussions with the doctors over the last week. Dr. Neglia feel it is best to proceed with the plaque at this time. This provides the least risk, with the greatest reward. What is next - I will return to St. Jude's on March 22nd. They will take a look, and see if anything has changed. If the tumor has not gone, they will take measurements for the plaque. It takes about 7 business days to prepare the plaque, so Drew and I will come home. We will return to St. Jude's, when the plaque is ready to be placed. Tony and I are at peace with this decision. The doctors have indicated we are in uncharted water, so please keep him in your prayers.

Bad News

As most of you know we have had a very difficult time making to over the 6 month hurdle for Drew. This time is no different. His cancer is back, and Tony and I are faced with some very difficult decisions. We will most likely need to seek additional treatment in New York or radiation at St. Jude's. Both are high risk procedures, with impact to vision. What we know now is that the Drewbug we know today, will not be the same little boy after these procedures. We will work with the doctors to determine the best option at this point. We are preparing ourselves for the possibility he will be blind. Please pray for us as we make these decisions.

It's Time to Fly Again

As most of you know our son Drew was diagnosed with Retinoblastoma (eye cancer) at 9 months old. Fast forward four years – 6 repeat occurrences – and we still continue the battle. Our hope is one day Drew will be a proud card carrying member of the “Cancer Survivor Club”. As of today, Drew's cancer is back. We will continue to fight for him. The doctors remind us each visit this is a marathon not a sprint.

Support is what gets each cancer family through the roller coaster ride. Many of you have walked/ran with us on this journey, and have seen the highs of the highs, and the lows of the lows. Today we are asking you to continue your support of Drew’s cancer journey, by lacing up your shoes, because it is "Time to Fly"!

This year Team Drew turns four. We are excited for another fun day full of friends and family rallying together to move the pendulum forward for childhood cancer. Last year Team Drew had over 120 team member and an additional 150 spirit runners. We were able to raise over $15,000 for the Children's Cancer Research Fund. These funds raised go directly to cutting edge research at the U of M to help eliminate not only Drew's type of cancer, but many other cancers that affect children. (For a recap of last scroll down to the video). This year we hope to exceed that with your help. June 25th is the 9th annual Children's Cancer Fund's Research walk/run fundraiser called "Time to Fly" (details below).

Why should you join us on this year? We could give you a million reasons but here are a few:
1.It is a great event for the entire family. There are games/activities for the kids and friendly competition for the adults.

2. It is a great way to teach kids about helping other kids. In addition, the medals at the end of the Kid's Fun run are a huge hit. Every kid comes in first place:)

3. You will make a significant impact in a child's life.

4. The gift cards raised through Team Drew will be used to donate toys to kids on the cancer floor at Christmas time. Last year over 40 gifts were donated on behalf of Team Drew.

5. Being a part of the sea of blue Team Drew t-shirts that day is an amazing feeling.

If you are not excited already here are some extra incentives to join the team or become a spirit runner (anyone who donates).

Runners/Walkers:
• All walkers and runners will receive a complementary Team Drew t-shirt, if they do not already have one.
• First male and female to cross the finish line in the 5K will each be awarded a $25 VISA gift card.
• First male and female to cross the finish line in the 10K will each be awarded a $25 VISA gift card.
• All walkers will be entered to win a $25 VISA gift card.

Anyone who donates:
• For every person that donates $75 or more your name will be entered in a drawing for one of two sets of 2010 Twins.
• For every $100 each person donates by June 15th your name will be entered in the drawing for a Joe Mauer autographed bat (actual size). If Joe's got time, you've got time!

Kids:
• All kid will receive a complementary Team Drew t-shirt if they do not already have one.
• All kids registered to run will be entered in a drawing to win 2 Nickelodeon Park passes at the MOA.
• All kids registered to run will be entered in a drawing to win 4 tickets to the AMC movie tickets.

Top Fund-Raisers:
• The person who raises the most funds will receive a $100 VISA gift card.
• Each time you raise $500 you will be entered into a drawing for a 32GB iPad with Wi-Fi. Spread the word, one quick email to your friends and family can get you to $500 easily.

Note: In an effort to share the wealth, each individual may win only one prize.

Unavailable to make it:
• Consider being a spirit runner and make a tax deductible donation to Team Drew.
• New this year – Donate that stuff you have laying around the house to the first annual Team Drew garage sale (more information coming soon). Don’t want to store it, let us know and you can drop it off any time at our house. All proceeds with be donated to Team Drew, and anything left over will be donated to a local charity.

Join Team Drew by:
• Go to: http://childrenscancer.org/timetofly/.
• Click on the word REGISTER.
• Type in Team Drew under Team Name: and click the search for a team button/
• Click on Team Drew to launch the team website.
• Scroll down to the list of team member names. At the top of the list click on Join Team.
• Follow the prompts to complete the registration.
• Forward the website to others asking them to support you and Team Drew in our race to end childhood cancer.
• If your company matches donations, fill out the form to double your impact. Remind others to do this as well.
• Consider adding it to your Facebook/Twitter pages to help us spread the word.

Race Detail:
10K Run $27 pre-reg/$32 race day reg 7:30 a.m.
* 5K Run $27 pre-reg/$32 race day reg 8:30 a.m.
* 5K Walk $25 pre-reg/$30 race day reg 9:30 a.m.
* Kids' Fun Run $11 pre-reg/$13 race day reg 10:00 a.m.

When asked what The Children's Cancer Research means to us we answer: It is an organization that gives children & families their lives back. Drew wouldn't be here today if it weren't for the hard work and dedication of CCRF, which is supported by great people like you. We would be honored to have you join us in raising awareness and money for this cause.
Please feel free to forward this to friends and family that might be interested in joining the team. Everyone is welcome to join. Thank you from the bottom of our hearts!

Tony, Heidi, Jack and Drew Giuliani

Will We Break the 6 Mos. Streak?

I was sitting at our computer desk tonight looking through some paperwork tonight and found an old invition. That invition was to a party Heidi, Jack and I threw Drew and all of our supporters back when he first completed his first set of chemo. The party was to celebrate the beginning of the end of our battle with cancer. I sit here, three and a half years later with a lump in my throat worried about next week and getting over this 6 month hurdle. We've never gone more than 6 months without bad news. If we get through next weeks appointment we won't be "at" 6 months but that means our next trip back will be after six months. You can't tell that we keep track, can you? :-) We are cautiously optimistic about next week and are excited to head to florida on vacation the week after next. We're hoping for a stress free vacation. The last 2 months have been great as a family and it seams so quick that we are heading back. Thanks again for your continued support and prayers.

4 Years and Counting

Four years ago today, Drew was diagnosed with cancer. How fast the time has gone. A lot of ups and downs over the four years. My hope today is that four years from now, this will just be a memory of bad days past. We will continue to ride the roller coaster, until he is in a full remission. Thank you to our family, friends and medical team who continue to be our support through this process.

Good News From St. Jude

Just got off a conference call with Dr. Wilson and Heidi at St. Jude. The freezing treatment from 3 weeks ago worked and Drew is once again officially cancer free (at least until our next trip). Drew and I will head back to St. Jude on 12/2 for his next exam. Prior to our next trip we have an MRI at the U of M, which really is a standard 6 mos. checkup. Thanks for your continued support, it means the world to us

Update on Drew

As many of you know we have had a lot of questions around what is next for Drew and our family. We met with Drew's oncologist today, and finally got some solid answers. Dr. Neglia (the oncologist) is one of the best doctors I have ever met. He has a way of putting our minds at ease with what is to come. He is also very good at consulting with other doctors to determine what all the experts feel is the best course of action. We had options going to the meeting. Here is what came out of the meeting:

1. Chemotherapy - This is not a good option. The problem with this option is the tumor is small, therefore it is hard to get enough chemo to penetrate through the tumor. This one is off the table as an option.

2. External Beam Radiation - All doctors have agreed this is only a last resort. There is high risk with external beam of secondary cancer (usually bone), damage to the eye, and damage to the tissue in the face. We have taken this off the table at this time.

3. Radiation Plaque - As most of you know we tried this back in February on this tumor. We would have to double the dose of the radiation to get any affect. Dr. Wilson (retina specialist) feels the eye is not strong enough to repeat the treatment this soon without damaging the vision. We have eliminated this as an option.

4. Intra-Arterial Chemotherapy Intra-arterial chemotherapy is a new treatment for advanced retinoblastoma in which the chemotherapy drug is injected directly into the ophthalmic artery (the blood vessel that leads to the eye). The patient is given general anesthesia by an anesthesiologist. A thin tube is inserted through a blood vessel (the femoral artery) in the groin (the top part of the leg) and threaded up to the ophthalmic artery, where the chemotherapy is then injected into the eye. This method of chemotherapy delivery is designed to minimize the drug's exposure to the rest of the body and to reduce side effects. The most common drugs used for this treatment are melphalan and topotecan. The average number of treatment sessions is about three for each eye, each session being delivered at four-week intervals. After a successful treatment, the tumors will shrink. If needed, residual tumors may be treated with laser, cryotherapy, or plaque. This procedure has only been done in the USA for about 8-10 years, however, it has been done in Japan for over 20 years. It is not like normal chemo, in that he will not get sick, lose his hair, have low counts after treatment. This procedure is done in New York, and would mean about 4-5 day trip.

5. Proton Beam Radiation - Proton beam radiation therapy is a form of external photon beam radiation therapy, but it may be more effective because its adjusted dosing delivers less radiation to surrounding areas of the tumor, which helps preserve other tissues and cause fewer side effects. This will help mitigate some of the risks of traditional external beam radiation. This would be done in Boston, and would be 30 days of consecutive treatment. Dr. Neglia is looking into this treatment option.

6. Cyro and Laser Treatment - This is the current treatment we are undergoing. We can only remain on this path if it is effectively reducing the tumor.

Dr. Neglia is leaning toward option 4, with a potential option 5. We have expressed our concerns about option 5, and that we would only go down that path if it will yield better results than option 4 and have less risk. We cannot put the entire family through a month long treatment, without good evidence this is going to stick for the long hall. Tony and I trust that Dr. Neglia will lead us in the right direction, as he always has done his best for Drew in the past. We will get through this again with a little patience (something we have to remind ourselves to have) and time. We ask that everyone says a little prayer for Drew, that the most recent treatment has worked, and that today was informational only. We will return to St. Jude's next week, and will update the blog with results. Thank you to everyone for your continued support. We couldn't have made it this far without you!!!

Another Disappointing Report

Not the best news today. Drew's tumor grew, so Dr. Wilson froze the tumor today. Drew had a pretty rough day. We are working with the doctors on next steps if this doesn't work. Cross your fingers and pray this works, so no next step is needed!

Sad News From St. Jude's

We got some very disappointing on Drew's exam today. Unfortunately we are unable to cross the hurdle of the 6 month mark, cancer free. Drew's cancer is back in his right eye. It is the same stubborn tumor we tried radiation on in February. We are accessing the next steps. They feel right now that radiation would not be a good option to repeat, because it could damage the eye. We will return in 3 weeks for another laser treatment. We are hoping this will work or we may have to consider chemotherapy again. Please pray for him!!!

St. Jude Helps Reach a Milestone

Just got off the phone with Heidi……..Drew’s eye exam has come back clean…….still on the path of cancer free. We will go back at the end of September for another exam and MRI. Little bit of a milestone as this will be the longest time Drew has been cancer free in the last 4 years (knocking on wood as I write). I would say that we are cautiously optimistic but it’s a pretty good feeling for today. Drew and Heidi will get home tonight. Thanks for your continued support!

Thank You for Taking the Time to Fly With Us!

Another successful year at the Time to Fly. Team Drew came out in large numbers this year, braving the heat to support the race against childhood cancer. We raised over $15,000. Thank you for continuing to support this event. It means a lot to our family to have such wonderful family and friends supporting us through this journey. THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!!

We will return to St. Jude's next week to check on Drew's progress. Please keep him in your prayers.

Enjoy the video from the Time to Fly:

3rd Times the Charm

Sorry for the delay in this post but we got back from St. Jude last Wed. and everything looked great. No new tumor growth and Drew's eye tissue showed no signs of weakness from the radiation treatment. We continue to struggle with Drew's true vision capabilities however.........we can't hone in on what his prescription should be. Unfortunately he wasn't too cooperative with some of the vision tests that we'll most likely have to try and repeat them here at the U of M. The next trip isn't until the 3rd week in July. We're excited to get the the 2 month milestone in between trips. Thanks for your continued support and are looking forward to seeing most of you at the Time to Fly!

Two in a Row

Good news today from St. Jude. Dr. Wilson gave us another good report card that everything looks good.....no new tumors, no growth with old tumors and Drew's eye tissue looks good. Yesterday Drew had a standard vision exam and the outcome was no change to his prescription. That means there is no true damage from the radiation plaque, at least for right now. Our next trip to St. Jude will be on 5/18. Drew has his MRI tomorrow so assuming we have a clean report there we can then celebrate this small victory. Thanks for your continued support and love, it's greatly appreciated.

Hi Ho, Hi Ho, It’s Off to St. Jude We Go

Tomorrow, Heidi and Drew head to St. Jude for their next set of follow up appointments. This trip will be longer because it includes both MRI and functional vision exams. We’re hopeful that we’ll get good news and that the cancer is still gone while keeping his vision intact. Thanks for your continued support, it means the world to us!

Radiation Successful After 1st Look

Good news today from St. Jude. Dr. Wilson came into the conference room and said, two words, "looks great!" Now we follow that news up with a lot of questions but ultimately the tumor is dead and Drew's eye tissue looks great. No initial indications that there is good tissue damage or impacts to Drew's vision. That being said those side effects can show up many, many months later but for right now it's a big win Drew. We'll continue to monitor his vision for damage and we make our next trip to St. Jude in 4 weeks. The next trip will be a little longer because they will conduct the standard 6 mos. MRI and other exams. Heidi and I are happy to know that we're in the clear for the next few weeks, it's always a load of our minds. We will continue to celebrate these small victories but are even more excited to celebrate bigger ones about 12 plus months from now when hopefully we can say he's been 12 mos cancer free. Thanks for your continued support and love, it's greatly appreciated.

Radiation Results, Here We Come

Well the last three weeks has gone by fast. So far we haven't seen any significant changes in Drew's vision. Other than the the blood shot right eye, we believe his vision is unaffected. We'll know more on Wednesday when he has his next EUA. We're hopeful that what Dr. Wilson sees is a dead tumor and limited damage to Drew's healthy eye tissue. Dr. Wilson indicated that side affects can take up to 6 mos. to appear so no matter what the results are we'll still have to wait. The radiation Dr. indicated that radiation is the best available treatment for Retinoblastoma so we're optimistic that this is going to be the 1st of many good report cards to come.

News Flash for Team Drew

As most of you know each year we do the Children's Cancer Research Time to Fly event. We are one month in and already are at 20% of our goal. As Tony and I continue to fight this battle for Drew, we realize more and more how important research is to not just cures but new treatment options. Thanks to a very generous donation from Bob and Kelly Brown, my cousins in RI, Team Drew will now be offering a new incentive to help us raise money. How does a one week vacation of your choose sound - destination and timing- you pick it (excluding flight). For each $500 you raise your name will be entered into a drawing to win the one week time share. All you have to do is join the team and forward your link to friends and family. Next year at this time you could be on a beach somewhere joining the sun and thinking about a childs life you helped save, while the rest of us our freezing our you who whats off!

Please consider joining us in the fight:

http://support.childrenscancer.org/site/TR/Events/TimetoFly?team_id=3280&pg=team&fr_id=1150

Home Sweet Home

Nothing beats coming home to a huge hug from my Jack. I love him to the moon and Jack. It is so nice to be home as a family again. Of course, it took Jack and Drew five minutes to start fighting. Even the sound of them fighting doesn't bugme today. Life is back to normal, and it feels good. Tony will go back with Drew in three weeks (March 9) to have a check up. Until then we are going to enjoy the simple things in life - Family and Friends.

No Longer Glowing

Drew had an early start today. We were in the OR to remove the plaque by 7:30......the removal process took about 45 minutes and he's now resting back in his hospital room. I'll be bringing Drew back down to St. Jude on 3/9 for his next eye exam. Between now and then we're going to be on the lookout for any vision issues. At this time, we have to hope that the plaque does it's job while minimizing vision damage.

We can't tell you how excited we are to get home. Jack isn't feeling the best and this whole spend a week in the hospital is definatly exhausting. We're glad to have had spent this time with Drew but are excited to be home with our whole family.


Thanks for your continued thoughts, we really appreciate them!

Day 4 - All is Well

Everything is going well here at St. Jude's. We are scheduled to remove the plaque tomorrow. They will put Drew to sleep, remove it, and discharge later that day if all is well. We will come home Wednesday. Drew is doing extremely well. He is such a trooper. Of course all the presents, candy and attention is helping. Tony and I are holding up well, with the exception of a lack of caffiene. I miss my Jamba Juice every morning to wake me up:)

A special thanks to our families for watch Jack while we are gone. He has a cold and possibly an ear infection, but is in good spirits. For those of you who know us well, anytime we are away from the kids they get sick. I think it is a subconcious way of missing us. We appreciate everyone looking out for him. We miss him lots and can't wait to get home to him. We talk to him every day, and he hasn't missed us yet.

Thank you for everyone'e continued prayers and thoughts. We are almost through this bend in the road. There is a saying "When you are going through hell, keep on going". I think we might just be on the other side soon!!!!

Happy Valentine's Day

Today is another day down at St. Jude. The weather is a little nicer than back home but still a little chilly. Drew is doing great today. Dr. Wilson stopped in around 11:30 and said his eyes were looking awesome. He was even nice enough to bring Drew in a little box of valentines chocolates. Drew loved them. Other than that not much to report today. Not a whole heck of a lot to do down here so Heidi, Drew and I spent some of our day volunteering by cleaning one of the toy rooms.......looking at the hospital walls for more than a day really starts to make you postal. While cleaning, we met a family from France that just arrived and they'll be here for the next 10 months or so. Their daughter was diagnosed with Neuroblastoma, which is a form of cancer that develops in the nervous system, somewhere between the base of the neck and the tailbone. The outlook for those patients is about 50% which is pretty low in comparison to the different types that are out there. Meeting her and her family was all it took to make us take a step back and realize how lucky we really are and how unfortunate others may be.

Drew is doing well and while this is another bump in the road, we believe we are at the beginning of the end.

Happy Valentines Day Everyone!

Day 2 - Starting a Little Better

Drew had a rough night, until they gave him some med's to knock him out. He slept hard, until about 6:30 this morning. I forgot how difficult it is for the parents to get sleep in the hospital. New technology is not always a good thing - the bed self adjusts to the weight pressure and shifts your weight throughout the night. Felt like it was vibrating all night. The nurses come in every 2-3 hours to do vitals. We are in a secured room with glass door, because of the radiation. It is like being in a glass bubble. When we cuddle with him, we have to lay a rubber/lead mat between us, so our radiation levels don't get to high.

Dr. Wilson can in at 7:00 this morning. Drew's eyes were matted shut and he was screaming "these fxxxing eyes are so stupid, they don't even open". Nice greeting for the doctor that is saving his life. Dr. Wilson got his eyes opened up, and Drew warmed up to him. By the end he was asking him to help him get the grease out of his eye. He has had his eyes open since. They are very sensitive to light, so we try to stay in dark areas of the hospital. Due to where they placed the plaque he does have some vision in his right eye. It is very blurry, but he seems to be managing to get around. I bought him presents to keep him entertained. Not so sure the nurses are happy about the ariplane that launches bubbles all over the room.

He just went to the gift shop to get another stuffed animal with Tony. That would bring the count to three new ones and we have only been here 1 1/2 days. He looks over those glasses, sticks his lower lips out, and says "Mommy and Daddy, right, you have to get me another stuffed animal because I can't see out of these stupid eyes." He is pretty good at the manipulation game. He can play me like a fiddle. I am pretty sure he will have about 50 new stuffed animals by the time we are home.

He's Up and Mad

Drew got out of surgery today, and everything went as planned. The doctor did not have to move any muscle to place the plaque. He placed in under the eye by the nose, which means Drew will be able to use some of the right vision over the next couple of days. This is his good eye, and the vision will be blurry but of some use. He just woke up and is extremely mad. He is screaming that he can't see and his eye is poking him. They just gave him some tylonol with codeine, hopefully this will calm him. This is going to be the most difficult night. We are trying to remain calm, but it is hard to see and hear him screaming for his eye sight back. Tony and I wear radioactive readers to ensure we are not getting too much radiation. We have to cover ourselves with a radiation cloth when we cuddle with him. Her doesn't like the feel of the cloth. Overall, I would say he is just plan mad. This is very difficult as a parent, I have never felt so helpless. Need to get back to him, but know people are looking for an update. We will update tomorrow with pictures.

Back to St. Jude's This Week

Tony and I talked with our oncologist last Wednesday, and he confirmed the next step for Drew is a radiation plaque. We will leave on Thursday for St. Jude's, and the plaque will be placed on Friday. This will be done as follows:

A small amount of radioactive material will be temporarily placed on the outside of the part of the eyeball where the tumor is. The radioactive material is put in a small carrier (known as a plaque), which is shaped like a very small bottle cap. The plaque is made of gold or lead to shield nearby tissues from the radiation. The radiation travels a very short distance, so most of it will be focused only on the tumor. The plaque is sewn in place on the eyeball with tiny stitches during a short operation. It is then removed during a second operation on the following Tuesday. Both procedures are done while Drew is under general anesthesia. Drew will stay in the hospital while the plaque is on.

Long term concerns include vision loss from cataract or retinal swelling resulting in retina detachment.

I think this will be the hardest procedure we have ever been through. Drew will have to rely on his vision in his left eye the entire 5 days. He has minimal vision, and using it as this level will be exhausting. The treatment may give him headaches, nausea, fatigue. It will be difficult to keep him entertained without vision. I did some shopping and was amazed at how many toys require vision. Something you don't realize is so precious until it is taken away. We hope the days go fast, and this journey will come to an end soon. We would like to look at this as a bend in the road, taking us in a new direction. The doctors are confident they can get the cancer with this treatment. Say a prayer that we can save the vision in the process.

If I could request one more thing - Please keep Jack in your thoughts and prayers. This is extremely difficult on him. He has already been in tears several times over us leaving him. How do you explain to him, that Drew's issues need to be put before his feelings right now. It is not fair to him. We have planned lots of fun things for him while we are gone, and I have bought him lots of presents. Unfortunately, at the end of the day, he still wants his Mom and Dad. I don't blame him. If I could scoop him up and make it easier for him I would. It is hard to watch his little heart break, and not be able to do anything about it.

On a lighter note, I told Drew what was going to happen. His response, "Well I am going to take that cancer, punch it in the nose, and knock it right out of my eye. And you will buy me lots of stuffed animal while I am there, Mommy, because I have to have a patch sewed to my eye." That kid always looks for the advantage and upside in things:)

Not the Birthday Present Drew Wanted

Just got off the phone with Heidi to get an update on Drew while he is down at St. Judes………..the tumor is active again. The Dr. indicated that we have used the laser enough in the past three years that we now need to move on to an alternative treatment. He wants to put a radioactive plaque on Drew next Friday. We would fly down to St. Judes on Thursday, plaque would be place Friday and it would stay on through the following Tuesday. We would come home either Tuesday or Wednesday night. After that, we’ll have to see what side effects pop up. We have discussed this option in the past and while we never wanted to go down this path we are knew it could happen. Prior to completely committing to this direction we are planning to meet with Dr. Neglia at the U of M to discuss this and the inner arterial chemo (this would require a trip to NY for a 2nd opinion). Chances are that we won’t do the chemo because the risks are greater if it doesn’t work but we want to make sure we have all our pro’s and con’s out on the table. Drew is in good hands at St. Jude, just bad news on his 4th b-day.

Thanks for your continued thoughts and support as we head down a new road/journey.

Celebrating Drew's 4th Birthday At St. Jude

Tomorrow, Heidi and Drew are heading to St. Jude for a quick eye exam under anesthesia. Drew will actually go under on his 4th birthday to find out if we can continue to count the months he's been in remission. Technically he's been in remission since December and we are hopeful that we'll be able to extend that this week. Drew may say he wants a castle or pirate ship for his b-day, we have bigger things on his wish list.

We were able to host Drew's 1st official birthday party this past weekend. While it was a great time for him, selfishly it was better for Heidi and I to see him finally be able to celebrate his birthday like any other kid.........4 years has been way too long.

Good luck on your trip buddy, we're hoping to celebrate a big b-day present when you get home Wednesday night!

It is Almost Time to Fly Again

As most of you know our son Drew was diagnosed with Retinoblastoma (eye cancer) at 9 months old. We currently commute to St. Jude’s in Memphis, TN for exams and treatment on a monthly basis. Although we are happy to report he is in remission for the 4th time, we know this can change in a heart beat. The doctors remind us this is a marathon not a sprint.

Many people have expressed how helpless they feel watching Drew and our family go through this process. I can’t tell you how many people have wished they could do something to help out. We are reaching out to you today for that help – Help us prevent other children and families from going through this journey. Today we are asking you to join us on this marathon by lacing up your shoes, because it is "Time to Fly".

Last year Team Drew had 86 runners and 140 spirit runners. We raised over nine thousand dollars for the Children’s Cancer Research Fund. The funds raised go directly to cutting edge research at the U of M to help eliminate not only Drew’s type of cancer but many other cancers that affect children. (For a recap of last year’s event check out the video on a posting below. This year we hope to exceed that with your help. June 26th is the 8th annual Children’s Cancer Fund’s Research walk/run fundraiser called "Time to Fly" (details below).

Why should you join us on this year? We could give you a million reasons but here are a few:

• It is a great event for the entire family. There are games/activities for the kids and friendly competition for the adults.
  
• It is a great way to teach kids about helping other kids. In addition, the medals at the end of the Kid’s Fun run are a huge hit. Every kid comes in first place.
  
• You will make a significant impact in a child’s life.
  
• The gift cards raised through Team Drew will be used to donate toys to kids on the cancer floor at Christmas time.
  

If you are not excited already here are some extra incentives to join the team or become a spirit runner (anyone who donates).

Runners/Walkers:

• All walkers and runners will receive a new Team Drew t-shirt.
  
• First male and female to cross the finish line in the 5K will each be awarded a $25 VISA gift card.
  
• First male and female to cross the finish line in the 10K will each be awarded a $25 VISA gift card.
  
• All walkers will be entered to win a $25 VISA gift card.
  　
  Runners/Walkers or Spirit Runners (anyone who donates):
  
• For every person that donates $100 or more by June 15th your name will be entered in a drawing for one of two sets of 2010 Twins tickets (2 seats per set). Yes, these seats are in the new Twins ballpark "Target Field"…….Click HERE and enter Section 115, Row 21 to get a view of your seats………CAN YOU SAY AWESOME!
  
• For every $75 each person donates by June 15th your name will be entered in the drawing for a Joe Mauer autographed bat (actual size). If Joe’s got time, you’ve got time!
  
• For every person that donates $50 or more by June 15th your name will be entered in the drawing for a $25 VISA gift card.
  
• Kids:
  All kid participants will receive a Team Drew t-shirt
  
• The first to cross the finish line will be awarded 2 two unlimited ride passes to Nickelodeon Park at the MOA.
  
• All kids registered to run will be entered in a drawing to win 4 tickets to the Children’s Museum.
  
• Top Fund-Raiser:
  The adult who raises the most funds will receive a $100 VISA gift card.
  
• The kid to raise the most money will receive a $25 Toys R Us gift card.
  Note: In an effort to share the wealth, each individual may win only one prize.
  

Join Team Drew by:

• www.ccrftimetofly.com, and then click on "Join a Team" or "Donate to a Team/Individual".
  
• Search for　the name "Team Drew" in the　team listing.
  
• Complete the registration/donation process.
  
• Forward the website to others asking them to support you and Team Drew in our race to end childhood cancer.
  
• If your company matches donations, fill out the form to double your impact. Reminds others to do this as well.
  
• Consider adding it to your Facebook/Twitter pages to help us spread the word.
  
• Race Detail:
  10K Run $25 pre-reg/$30 race day reg 7:30 a.m.*
• 5K Run $23 pre-reg/$28 race day reg 8:30 a.m.*
• 5K Walk $23 pre-reg/$28 race day reg 10:00 a.m.*
• Kids' Fun Run $11 pre-reg/$13 race day reg 9:30 a.m.
  　
  *****NOTE: All registration prices are discounted through February 28th, some up to 20% off! Prices will go back to the standard pre-reg prices beginning March 1.
  　
  When asked what The Children’s Cancer Research means to us we answer: It is an organization that gives children & families their lives back. Drew wouldn’t be here today if it weren’t for the hard work and dedication of CCRF, which is supported by great people like you. We would be honored to have you join us in raising awareness and money for this cause.
  

Please feel free to forward this email to friends and family that might be interested in joining the team. Everyone is welcome to join. Thank you from the bottom of our hearts!

Tony, Heidi, Jack and Drew Giuliani

http://support.childrenscancer.org/site/TR?fr_id=1150&pg=entry - CCRF Time to Fly Website

Early Christmas Gift Comes True

As of yesterday, we started our count over...........that's the number of days Drew is cancer free. Drew's Dr. at St. Jude told us that he tripled checked the spot he was worried about and is confident it is gone. He followed that up with our next appointment date which is on Feb. 3rd. Most of you know that we typically go every 4 weeks so pushing it out to 7 weeks only means great news. On Feb 3rd we're hoping the count continues, especially since it's Drew's 4th birthday. Thanks all for your continued love and support. Merry Christmas!

PS. above is a picture of Drew after the St. Jude's elf's gave Drew his own elf hat.

Busy 10 days Ahead

Lots going on in the next 10 days. On Tuesday, Drew is going in to the U of M to have his port removed and his ear tubes replaced. At this point in Drew's treatment it was decided that Chemo is behind us. It is very exciting to know that we won't have to put more poisen in Drew, however if his cancer continues to be an issue long term we know radiation will be the next step. We are very hopeful that the laser/freezing therapy's do the trick. The ear tubes will help with those recurring ear infections that have been quite frequent this fall.



On Friday, Jack will be having hopefully his 1st and last plastic surgery. He has a large overlap on his nose that the surgeon will be "sanding" down. We've heard that some people can get hooked on plastic surgery but this may be a little different case :-).



A week from Tuesday, we'll be heading back to St. Jude for another routine exam under anasthesia. We're curious to see how that one vein has reacted to the November treatment. We're hoping to start counting the months in remission again.

3 Years and Counting

Three years ago today, Drew was diagnosed with cancer. How fast three years has gone, and yet we continue to battle this disease. Our hope - Three years from now we will be blogging about being cancer free. We are so proud of Drew and his spunk, bouncing back each time the cancer knocks him down. Thank you for all your continued support and prayers. Say an extra prayer today, for all the kids that continue to fight.

Goods News - But Proceeding with Caution

First the good news - Dr. Wilson indicated the part of the tumor that was growing last time appears dead. Now the proceed with caution news - A blood vessel in the same tumor "looks"different. It appears more flat than last time, which could be caused by growth or a side affect of the last treatment. Based on the look of the rest of the tumor, he does not think it is growth. He treated the tumor just in case it is growth. We will go back in 5 weeks for another look. Overall this is good news:)

End of a Good Run

I just received a call from Heidi about Drew down at St. Jude’s. I struggle to write this blog entry because it's not the best news to report, his eye cancer is back in his right eye. It’s a reactivation of a older tumor but it’s not impacting his vision and is very small. They are confident that this tumor will die with focal treatment but it’s a matter of time and making sure it’s not moving somewhere else. He is being treated with the laser and we’ve decided last minute to keep his port in………….We’ll be heading back to St. Judes in 4 weeks. 3 years later we continue the fight……..we refuse to give up that someday he’ll forever have clean report cards. On the positive side of things this is the longest Drew has gone without treatment and activity. We'll get through this, we always have, but for right now it just sucks.

Thanks for your continued support.

Off to St. Jude's Tomorrow

Sorry it has been awhile since we have posted, but no news is good news. Drew has been doing really good, and everything has remained stable. Drew and I will head to St. Jude's tomorrow for an MRI, vision check, eye exam under anesthesia (EUA) and port removable. Tony will stay home with Jack, as he is now in school. This will be a big visit, because of the port removable. Drew is nervous and excited to have no more pokes. I think it has been there so long, that he doesn't understand why they are taking it out. It is a part of him. I told him he does not need it anymore, since he knocked the cancer out. Cross your fingers for a good visit the next couple of days. We will post with results.

Another A+ From St. Jude's

Tony and Drew are at St. Jude's right now. Another good report. No new activity and no reactivation. The news keeps getting better. Brighter days are finally here!!!

St. Judes Continues with Steady Results

Heidi and Drew got back last week from St. Judes. The report card was great.....no new growth and all is dead. We'll go back again in 5 weeks for what we hope is another routine checkup with no need for treatment! Please say an extra prayer for Heidi's side of the family. Heidi lost her Uncle this week and made a quick trip out to Pawtucket RI for the funeral. Please keep them in your prayers during this hard time.

Time to Fly 2009

Well this year we did the Time to Fly, minus one important member - our little Drewbug. He was home sick with H1N1 (swine flu), however, he was there in spirit. Everyone did a wonderful job, and the day was a success in spite of the rain. It was great to see everyone having fun with a little friendly competition, laughing and enjoying the time with family and friends. We appreciate everyone continuing to support this event. We look forward to seeing you back next year. Enjoy the video recapping the day!

Another Good Visit at St. Jude

Just got out of a meeting with Dr. Wilson and Dr. Galindo and everything looks good in both of Drew's eyes, no new growth or signs of activity. They didn't see a reason to treat this time so that was a plus as well. We will come back in 5 weeks for his next exam. Thanks for your continued prayers and good thoughts, we really appreciate them. Now it's time to get ready and really concentrate on the "Time to Fly!" If you haven't signed up yet, please do, we are only a month away!

Tumors are Dead

Good news from Memphis. Everthing is quiet in the left eye and the 2 tumors in the right are dead. Dr. Wilson used the laser, just to be safe. We will come back in 4 weeks for another check. Thanks again for all your prayers.

Great News From Memphis

We got wonderful news from Memphis the last three days:

1) MRI scan came back good. Cancer has not traveled outside the eye.

2) Vision check went well. No change in vision, which is to be expected. We are going to start patching the right eye, to strengthen the left eye. We hope to get some strong exterior vision. The opthomologist wants us to get a pair of rec specs for t-ball this summer, so the eyes are fully protected. Also she indicated he should never play hockey and strongly recommends no football. Apparently kids with RB have a high chance of getting a retina detachment if hit hard later in life. No need to take this risk. We will stick to no contact sports.

3) Now for the best news - TUMORS ARE REGRESSING. The green laser is working and at this point we can avoid radiation. This is fabulous news. He lasered again and we will come back in three weeks. Tony and I will rotate, so someone is home with Jack. He will come every three weeks, until he has 2-3 eye exams with no growth and no treatment.

Thank you again for everyone's prayers. They are working!!!

Good News from St. Jude's

Finally a posting with some good news. Drew had his first visit this week at St. Jude's in Memphis, Tennessee. There were no Elvis sightings:) It was a lot of meetings and new faces, and the most wonderful people you could ask for to treat Drew. They were top notch, and always so caring about Drew and how he handled things. Dr. Wilson, his new, retina specialist is exceptional in every aspect. He is very confident, direct and amazingly knowledgeable. We feel he is in the right hands again. A summary of Dr. Wilson's assessment of Drew:

• He has two active tumors in his right eye. We were only aware of one last month. Dr. Wilson was able to treat it with a special green laser. He indicated he was not surprised the equipment in MN was not able to get it. Apparently being a white Blondie (someone with little pigment in his skin), it is hard to get the tumor with the type of laser they had in MN. This type of laser relies on pigment to get good uptake on the tumor. The special new laser machine at St. Jude's works better on kids of his descent.
• His left eye has a vitreous seed that is still quiet. He doesn't see any activity, but wants to watch it closely. He said with Blondie kids it is looking at white on white, which makes it difficult to spot a tumor. He will keep a close eye on it for a flare up.
• At this time he feels we can save both eyes, and maybe gain some vision back in the left eye. He said it depends on how hard we are willing to work at it and the effort we put in. He won't get his 20/20 vision back, but can have strong exterior vision. This is very good news. He wants us to start patching the eye to strengthen the vision. This will help with keeping the eyes symmetrical too.
• St. Jude's will now be his primary care physicans for his cancer. They will work with the oncology group at the U of M for our needs in between trips. We will go back in three weeks for another look,vision assessment and meet the oncology doctor (who was in Vienna this week). At this time he thinks he can control the tumors with the green laser. He understands the importance of preserving the vision, and will take no risks with the right eye. If needed he can control it with a plaque treatment. We

We were really impressed with everyone at St. Jude's and are very optimistic about the care he will receive in the future. We are very grateful to the people at the U of M for everything they have done for him in the past. We appreciate their willingness to continue to work as a team with St. Jude's to provide the best care for Drew.

Thank you for your continued prayers and support!

A Little More Rain

We took Drew into urgent care tonight and he has an ear infection and pink eye. I am thinking this storm has got to ease up a little. When he got home he said "But Mommy the doctor, he not get rid of my bumps in my eyes." I told him we would get rid of them, we just had to keep fighting. We will soon be going to St. Jude's to get help!

Please keep Jack in your prayers. This is already been very hard on him. Lots of tears and wanting to go with us. They do not let siblings under 12 come along. My heart breaks for Jack. It is hard to be a mother torn between her two boys. He is so strong and I am so proud of him. This is not fair at all, but life is not always fair. We will update the blog when we get home from St. Jude's.

Thanks to Brinks Security Company the house is now fully secured! Hopefully this should be the end of the rain storm.

When it Rains it Pours

We met with Drew's Oncologist yesterday and he reviewed all our options for Drew's care. We asked himwhere he would go if it were his kids. He indicated the best place for total quality of care was St. Jude's hospital in Memphis Tennessee. We value Dr. Neglia's opinion immensely, and therefore we have decided to commute to St. Jude's for Drew's eye care. He will be transferred to a team of specialist that just deal with Retinoblastoma. Dr. Neglia will continue to see Drew and be his primarily oncologist. The reason we are transferring to St. Jude's is for several reasons:

• Dr. Neglia would like this team of doctors to provide a second opinion on next steps. Drew is now in a rare minority since his tumor is back for a third time. He would like another set of doctors to wiegh in on Drew's case.
• St. Jude's offers all forms of treatments. The U of M does not have available several of the potential treatments. Our option, of course, is to treat locally (Freeze and Laser) at first, but this is one of the original tumors and history would indicate we may need other treatments. Their are risks and benefits to each treatment option. St. Jude's will help us figure out what is the best quality of life for Drew.
• Our retina specialist has left the U of M. His replacement is willing to learn to treat RB kids, and we appreciate this, however at this time she has no experience with the tools. Tony and I are not comfortable with this option. Our oncologist agreed that at this time, we need someone who is an expert.

So what is next - We will not go through with the EUA scheduled on March 21st. Dr. Neglia has already consulted with the experts at St. Jude and they are willing to see Drew. Most of these doctors are at a conference next week with Dr. Neglia. They will most likely be able to get us in the following week. There eye exam days are Wednesday, so we will schedule it around that. They will meet with us, do the next EUA and tells us where we should go from here. They will continue to treat Drew going forward for EUA's and whatever else they think he needs. Dr. Neglia will work with them and us in the decisions on care, and will continue to see Drew in Minnesota. This will probably mean only monthly visits to Memphis, Tennessee. Hopefully we will have an Elvis sighting:)

So now for the rest of the rain storm - I can home from the oncologist on Friday to find, some fine gentlemen had punched through our back and front door window. When I noticed it, I left and went to Tim & Judy's house (Tony's parents). I called 911 and they asked if the person was still in the house. I wondered if she was crazy! There was no way in he double hockey stick I was going in the house. The cops came and the upstanding citizen had left the house. With him he took some cheap jewelry, a few social security cards and my grandma's wedding ring. He also left the need to rummage through our drawers, toss a bunch of stuff all over our bedroom and mess the entire bed up. Next time he could be a little more courteous, and let me know first. This way I wouldn't bother to clean. Boy is he going to be disappointed, because he got nothing of value. In fact, I had lost the diamond in my Grandma's wedding ring so it has little monetary value. Would be nice if he could return it for sentimental reasons!

So the storm continues, but we will weather it! Thank you for everyone's continued support. We will let you know when we know more.

It is "Time to Fly"

As most of you know our son Drew was diagnosed with Retinoblastoma (eye cancer) at 9 months old. Life has been a roller coaster ride since the beginning of this journey. In the last 2 years, Drew has gone through 25 eye exams under anesthesia, 3 port surgeries, 7 MRI’s, many local treatments of the tumors and 10 months of chemotherapy. At his most recent eye exam, the doctors indicated one of his original tumors in his right eye has started to grow again. They treated it, and now we wait again. We are unsure what the future holds for Drew. If history is any indication, we will be repeating chemo or starting radiation in the upcoming months.

We are excited for the day that we can cure this devastating disease. Drew is one of the lucky ones; his type of cancer has a 95% survival rate. Sadly, we’ve met other kids that aren’t so lucky. They continue to battle this disease everyday, and there are many that have lost the fight. This is what drives us to continue the fight against this deadly disease until we find a cure.
Many people have asked us what they can do for Drew and our family throughout this process. Our response to this has been to help us prevent other children and families from going through a similar type of journey. How can you help in that fight – Lace up your shoes or become a spirit runner, because it is “Time to Fly”.

Last year at the Annual CCRF Time to Fly Run/Walk we created a team of 62 runners and 54 spirit runners, and were awarded the top Family/Friend fundraising award. We raised over eight thousand dollars for the Children’s Cancer Research Fund. The funds raised go directly to cutting edge research at the U of M to help eliminate not only Drew’s type of cancer but many other cancers that affect children. This year we hope to exceed that with your help. June 27th is the 7th annual Children’s Cancer Research walk/run fundraiser called "Time to Fly" (details below).

Now for the fun part, incentive in a tough economy, to join the team or become a spirit runner (anyone who donates). This year we have a few extra gift cards, tickets and football and baseball collector items to help make your decision to join easier. I’m sure you all have heard of Matt Birk, Minnesota Vikings 6 time Pro Bowl center and Joe Mauer……Minnesota Twins catcher……All Star…..two time MLB batting champion….both of them were kind enough to donate a few items to Team Drew to get you motivated. Now if Matt Birk and Joe Mauer have time, you have no excuses!

Runners/Walkers:
· All new walkers and runners will receive a Team Drew t-shirt. We will provide t-shirts to returning runners/walkers if they need a new one.

· If registered by June 15th, your name will be entered in the drawing for a Joe Mauer autographed bobble head.

· If registered by June 15th, your name will be entered in the drawing for a Matt Birk autographed football.

· First male and female to cross the finish line in the 5K will each be awarded a $25 VISA gift card.

· First male and female to cross the finish line in the 10K will each be awarded a $25 VISA gift card.

· All walkers will be entered to win a $25 VISA gift card.


Runners/Walkers or Spirit Runners (anyone who donates):

· For every $125 each person donates by June 15th your name will be entered in the drawing for a Joe Mauer autographed bat (actual size).

· For every $75 each person donates by June 15th your name will be entered in the drawing for a Joe Mauer autographed ball.

· For every $75 each person donates by June 15th your name will be entered in the drawing for a Matt Birk autographed football.

· For every person that donates $50 or more by June 15th your name will be entered in a drawing for one of two sets of Twins tickets (2 seats per set).

· For every person that donates $25 or more by June 15th your name will be entered in the drawing for a $25 VISA gift card.

Note: In an effort to share the wealth, each individual may win only one prize. Prizes will be drawn in the order in which they are listed.


Kids:
· All new kid participants will receive a Team Drew t-shirt. We will provide t-shirts to returning kids if they need a new one.

· The child that raises the most money will be awarded 2 unlimited ride passes to Nickelodeon Park at the MOA.

· The first to cross the finish line will be awarded 2 two tickets for Grand Rios Water Park.

· All kids registered to run will be entered in a drawing to win 4 tickets to the Children’s Museum.


Race Details: Time To Fly
· Date: 6/27/09
· Location: Harriet Island
· Walk/Runs/Times/Costs (if you register through 06/21/09):
· 10K run @ 7:30 AM ($25) per runner
· 5K run @ 8:30 AM ($23) per runner
· 5K walk @ 9:15 AM ($23) per walker
· 1K kids fun run @ ($11) per child


Websites:
· To join the team or become a spirit runner: http://support.childrenscancer.org/site/TR/Events/General?team_id=2270&pg=team&fr_id=1130

If the link does not work go to: http://www.childrenscancer.org/ > Click on Time to Fly > Click on Register Now > On the right side of the screen click on Find a Team or Participant > Click the button for Search for a Team > Type Team Drew in the box > Click on Team Drew > To become a spirit runner (make a donation) click on Make a Gift on the right side of the screen and follow instructions > To join the team scroll down to Team Drew and Click on Join Team

· To read Drew’s story: http://drewgiuliani.blogspot.com/

There is a saying that "God doesn't give you more than you can handle". We have often asked ourselves: How much does one child have to handle? Children are supposed to be innocent and care free, and this disease has stolen that from many children. When asked what The Children’s Cancer Research means to us we answer: It is an organization that gives children & families their lives back. Drew wouldn’t be here today if it weren’t for the hard work and dedication of CCRF, which is supported by great people like you. We would be honored to have you join us in raising awareness and money for this cause.

Please feel free to forward this blog entry to friends and family that might be interested in joining the team. Thank you from the bottom of our hearts!
Tony, Heidi, Jack and Drew Giuliani

The Wish Was AWESOME!

We all had a great time on the Make a Wish trip. As you can see from the previous posts the boys were really treated special on this once in a life time trip. We can't begin to thank both Make a Wish and Midwest ISO (the company that sponsored Drew's wish) enough for their gift and all the careful planning that went along with it. Thank you! Here is a video from the trip.

Friday will be an interesting day for us.....we're meeting with Drew's oncologist, Dr. Neglia to discuss our options come the end of March. Since we have been through Chemo twice, we're assuming that he'll point us in the direction of radiation plaque therapy. In preparation for that possibility we have reached out to Dr. Olsen (Drew's original eye doctor now in Atlanta) to see if they'd be willing to see him if that would be our path. He wrote us back at 12:30 am telling us to come on down. We don't like the fact that we may have to travel but we'll do whatever it takes to get past this. Thanks for your continued thoughts and prayers!

Day at the Beach

Today we spent the day at Castaway Cay, having lots of fun in the sun. Jack and Drew loved the beach, and didn't want to leave. Unfortunately Captain Gus needed our help. We just got back from helping him drive the ship and blow the whistle. Drew didn't know what to think. At the end they gave him a driver's certificate, and he is now "officially" able to operate Cruise ships. He has asked us to buy him one. I am sure it will be our first purchase when we win the lottery:) We are off the the pirate party tonight. Tomorrow will be a day at sea and relaxing by the pool.

Wishes Do Come True

Just thought we would let everyone know we are having a magical vacation. The Make A Wish Foundation and Disney has made this a very memoriable experience. The kids are having a blast. Today we swam with the dolphins, and Drew gave him a big hug and kiss. Tonight we got news that they are going to make this experience even greater. We are going to get to tour the Captains Room and learn to drive the ship. Drew doesn't know yet, because they will send him a letter in the morning telling him about it. Mail call has been pretty exciting so far. Each time we get back to our room, they have a letter with something special for Drew and the family. Tomorrow there will also be a special private party with "special guests". The said not to forget your camera. We can't post pictures from the boat, but will post when we get back!

Old Tumor Grows In Drew's Good Eye

Not the best news today from the hospital. Dr. Christiansen found that one of the original tumors in Drew's right eye (the only one with substantial vision) revived itself. Quite honestly, Heidi and I were crushed......while we didn't want to get our hopes up prior to today, we did. We thought we had this disease in our rear view mirror but we don't. The main reason that this was so disheartening was that this particular tumor was one of originals, it's been through laser, freezing and 10 months of Chemo and it's back. Our treatment option for today was laser......so Dr. Christiansen hit it hard. We'll go back on March 21st to see how the tumor reacts and at that point we'll know more. Thankfully the tumor is still far from the center vision so it isn't impacting Drew's only vision in too much of a negative way. As far as what are our options, we don't know.....maybe the laser will work, maybe we'll be starting chemo over & maybe we'll be heading down a path that we haven't before, like radiation. One of the worst parts of this is the unknown. Don't worry we'll dust our selves off and march forward, we've come too far to not continue this fight. It was funny, tonight I was home with Drew while Heidi and Jack were up working out......I was talking with Drew and told him that the Dr. found a new bump today and asked him what he thought of that. He said, "I'm going to knock that bump right off!" And that was the only thing I needed to hear to move past the news from today and once again hit this thing head on.

On a happier note, last weekend Drew received a portion of his Make a Wish. Drew has always been enamored with Elmo's Firefighter. Well the good men and women of the St. Paul Fire Department showed up in great force on Sunday. They brought two trucks and blocked the street off for about an hour and a half. They let Drew, Jack and his cousins ride up in the bucket on the hook and ladder truck, let Drew sound the sirens, gave him a ride on the streets, let him shoot water from the hose and gave him a hat and firefighters badge. They were great....you couldn't ask for a nicer bunch of people. The time they spent was unbelievable...we can't thank them enough!

On Saturday we embark on the Make a Wish Disney Cruise. It couldn't come at a better time as Heidi and I feel the boys need a little spoiling right now, especially since we are unsure of our path in the coming months. We're all really looking forward to it! We'll post pictures as soon as we can.

Thanks again for your continued thoughts and prayers, we appreciate them all!

February…A Big Month

February is a HUGE month for Drew and our family. First and foremost, Drew turns three tomorrow. We can’t believe that he’s three already. We are so proud of what he’s accomplished in so few years. I never knew a child could have such a strong character. HAPPY BIRTHDAY Drew Bug, we love you!

We’ll know more about what the next 6 mos. will hold when he goes in for his next eye exam on the 18th. There still is that spot in the left eye that looked different in the last exam that we are watching closely. It’s been too nice having normal holidays and being able to be a typical family, we’re hopeful we don’t take a step back!

As far as Dr. Christianson is concerned, we have good news. The U and Dr. Christianson were able to work out a compromise where he can come back two Saturdays a month for operating room time. This will allow him to continue to see Drew on these visits while he trains in the next doctor that will take over for him. We anticipate that this will continue for the next 6-8 months. It just goes to show you the love and passion these doctors have for their patients. We can’t thank him enough for his willingness to disrupt his life to ensure Drew has a smooth transition.

After Drew’s next exam, good, bad or no change, we’re headed on Drew’s Make a Wish. We leave the Saturday after the exam and are lucky enough to be going on a Disney cruise. We are planning on swimming with the dolphins and who knows, maybe Drew will get a chance to drive the ship. Needless to say, Jack and Drew can’t wait. It’s hard for the boys to understand the size of the ship…. they keep asking if it’s bigger than our house…. Boy are they in for a surprise!

The last three years has brought a lot of ups and downs for our family, we’re only happy that we’re all here to share them together.

Good and Some Disappointing News

Drew went in for an eye exam today. It was a bit of a cluster, considering the scheduler mixed things up. We got up at 4 am to be to the hospital on time, and Dr. Christianson didn't show up until 9. His scheduler forgot he is not available until 9 on Fridays. They had to scramble to get an OR and MRI spot later in the day. No news on the MRI, and will not have it until next Friday. We are not expecting anything. The right eye looks good (yeah), nothing new to report there. The left eye is some slightly disappointing news. The tumor that sat in his 20/20 vision has always had a small spot on the end. Dr. Christianson thought it looked different today, he indicated a little more noticable. He is not sure if it was the angle of the camera or the lighting or something new growing. He will look again in February. We are less stressed with the left eye, since he has limited vision, therefore, more options.

Now for the disappointing news, Dr. Christianson is leaving the U of M. He has accepted a position as the Chair of the Department at Boston Mass. This is great for him, and sucks for us. They are looking for a replacement right now, and have a potential candidate who just moved to MN with experience. She (I think) has a private practice and is interested in continuing the work in RB. Wethey will find one soon, or we will be the traveling freak show. There is not another doctor in Minnesota, so off we will go to Dr. Olsen or Dr. Christainson. Say a little prayer that they get someone soon!

Now for the exciting news - The Make a Wish Foundation is granting Drew a Disney Cruise. We are starting to work out the details, but they are sending the entire family on a 4 night/5 Day cruise on Mickey's Boat to the Bahamas. The kids are super excited. They deserve this break for the craziness. Tony and I couldn't be happier for them. This is an opportunity for our family to get away and enjoy life for once. This is an amazing gift, nothing short of extrodinary. What a wonderful organization. We can't begin to repay them for this gift, but we are so grateful! We will share more details as they come.

Hope everyone is having a safe, healthy and happy holiday.

Two Year's Ago & One big Wish

Two years ago today, Drew was diagnosed with eye cancer. This was the day that changed our lives forever. It is hard to believe he has been battling this disease for two years. He has been so tough and so resiliant. We are so proud of him. I took him to get a haircut (yes it is actually long enough to cut again), and he was sitting there on the chair swinging his legs like any other kid. He looked up at me and said, "Mommy, I got cancer. I go to the hospital and they poke me in the port. They give me medicine and I knock the cancer right off." He said it so matter of fact, like it is so normal to have cancer. What an amazing kid to endure so much and yet still be so happy.

He deserves something special for all he is going through - and there is an organization that believes this too. On Thursday, we got some amazing news. Almost two years after his diagnosis, they Make A Wish Foundation has contacted us and would like to grant Drew a wish. Within the next week, a Wish Team will contact us to set up a time to interview Drew. They have asked us not to give him any ideas of what to wish for, but to allow them to formulate a wish that he wants. They will do some interactive play with him asking him four questions "I wish to have, I wish to be, I will to go and I wish to meet". Based on how Drew's answers these questions, the wish granters will create an unforgettable experience driven by the Drew's creativity. We will update everyone when we know more, but wanted to share this exciting news.

No News is Good News

There is nothing to report new on Drew. His hair has come back, and he is turning into a defiant little 2 year old. Back to normal for now. We will go for a recheck on Dec. 5th. Cross your fingers, we will update when we know something.

All as Expected

Drew's eye exam went well yesterday and everything was as expected. No new tumor growth and the tumors that he did have, are dead. Now that the chemo is pretty much out of his system, we will have our true test. We told Dr. Christiansen that we were apprehensive about the news given that it came back before. He told us that Drew is older and that this disease will shut down, it's only a matter of time (and our window is shrinking). He felt that eventhough this reoccurred in Drew, he was pretty opptomistic that this was the end of our journey. We were excited to hear that but still would like to get to next summer with no changes prior to being more comfortable.

We're already hoping for an early X-mas present. I am confident in speaking for Heidi in saying, that's all we want this year. Last year before x-mas we found the new tumor that forced us to repeat Chemo. We'll have to wait until December 5th, since that is his next exam with an MRI. In the mean time, we'll enjoy our time as a family with Jack's B-day, Halloween (I'm sure we'll post pictures), Thanksgiving, X-mas shopping & everything in between.

While we get a little break, please keep all the other kids dealing with cancer in your thoughts an prayers. While we get time to concentrate on family, there are many others that don't.

What Will the Future Hold?

For the last 4 months our family has had a "standard" routine when it comes to Drew’s care. We typically would go in for an eye exam under anesthesia, then upstairs for chemo, then home for about 2 weeks of isolation. After that we would do it all over 2 weeks later. Tomorrow that routine changes. We will head in for our eye exam about 9 AM and the plan is to go home the same day. We are assuming that Drew’s exam will go well since he’s 5 weeks post chemo & it’s finishing it’s way through his system. If our assumptions are right, Drew should not have to go back for another exam until either November or December. On one hand we are excited to see chemo go but on the other hand we are uncertain of the future. We thought we were at the end of this road before but had to make a slight turn back. So needless to say we are excited and terrified at the same time. As far as what the future holds for Drew, only time will tell.

While the future is uncertain, we do know one thing, this experience has been positively life altering. We do believe that this illness can destroy a family, however our family has changed for the better and we learned so more about how to love each other & value our time spent as a family.

Please continue to keep Jack and Drew in your thoughts and prayers as we get ready to open a door, not knowing what’s behind it.