Andrew Giuliani

Early Christmas Present

2011-12-05T10:01:00.001-06:00

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

2011-11-17T09:47:00.002-06:00

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!

2011-10-17T13:44:00.000-06:00

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

2011-10-03T09:52:00.001-06:00

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

2011-08-31T09:18:00.003-06:00

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

2011-08-01T08:10:00.002-06:00

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

2011-07-19T15:52:00.008-06:00

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

2011-05-11T22:22:00.000-06:00

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

2011-04-13T07:28:00.002-06:00

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

2011-03-27T21:50:00.002-06:00

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

2011-03-08T10:44:00.001-06:00

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

2011-03-02T14:56:00.000-06:00

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

2011-03-02T10:54:00.003-06:00

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?

2011-02-21T20:52:00.003-06:00

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

2010-11-17T09:05:00.003-06:00

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

2010-11-03T09:34:00.000-06:00

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

2010-10-28T15:14:00.000-06:00

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

2010-10-13T20:30:00.002-06:00

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

2010-09-22T19:30:00.000-06:00

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

2010-07-14T09:42:00.001-06:00

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!

2010-07-08T20:53:00.002-06:00

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

2010-05-24T22:18:00.002-06:00

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

2010-04-07T14:20:00.003-06:00

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

2010-04-05T12:59:00.000-06:00

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

2010-03-10T13:24:00.002-06:00

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

2010-03-07T21:21:00.003-06:00

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

2010-02-23T07:16:00.002-06:00

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

2010-02-17T16:26:00.002-06:00

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

2010-02-16T09:23:00.004-06:00

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

2010-02-15T10:07:00.002-06:00

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

2010-02-14T12:59:00.004-06:00

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

2010-02-13T09:29:00.004-06:00

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

2010-02-12T18:54:00.004-06:00

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

2010-02-08T17:00:00.002-06:00

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

2010-02-03T16:13:00.002-06:00

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

2010-02-01T14:54:00.004-06:00

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

2010-01-15T10:17:00.002-06:00

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

2009-12-17T21:45:00.004-06:00

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

2009-12-06T21:36:00.003-06:00

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

2009-11-17T08:55:00.003-06:00

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

2009-11-11T15:12:00.001-06:00

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

2009-10-14T11:31:00.000-06:00

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

2009-10-12T09:12:00.002-06:00

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

2009-08-19T11:58:00.001-06:00

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

2009-07-21T21:46:00.002-06:00

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

2009-06-29T21:36:00.011-06:00

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

2009-05-27T10:03:00.003-06:00

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

2009-04-29T10:29:00.003-06:00

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

2009-04-08T12:25:00.004-06:00

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

2009-03-19T16:12:00.002-06:00

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

2009-03-09T21:19:00.002-06:00

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

2009-03-07T11:23:00.002-06:00

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"

2009-03-04T13:40:00.001-06:00

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!

2009-03-01T16:06:00.006-06:00

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

2009-02-24T15:57:00.002-06:00

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

2009-02-23T18:29:00.002-06:00

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

2009-02-18T21:04:00.004-06:00

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

2009-02-02T21:31:00.004-06:00

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

2008-12-05T20:46:00.002-06:00

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

2008-11-17T10:15:00.003-06:00

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

2008-11-05T14:42:00.001-06:00

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

2008-09-18T10:29:00.002-06:00

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?

2008-09-16T20:32:00.003-06:00

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.

Things Going OK

2008-08-31T12:10:00.002-06:00

Drew has been doing OK. The cumulative affects of chemo has kept his counts down a little. Last week his platelets were down low enough that we had to get him a platelet transfusion. He is so bruised up on his legs, he looks as if someone beat him with a baseball bat. The silver lining however, is that hopefully this will be his last transfusion. We were sad to miss the RB picnic a week ago because of his low counts but are looking forward to the Hope Kids 2ND Annual Alliance Festival. Our whole family is able to come and the kids have a blast over at the U while being treated to all kinds of food, a petting zoo, games, and jumparoos. It's great of them to not only recognize the impacted family as going through a difficult time but also the sacrifice the Grandpa's/Grandma's, Aunts/Uncles and Nieces/Nephews have made.

Drew will go in for his next eye exam on 9/17/08. We anticipate no change in his status (especially since the chemo is just starting to exit his system) so that should push us out 3 mos. until his next exam, which would fall right around Christmas. We're hoping his hair will start coming back as the real cold weather starts pushing in. We're excited to see how different it is from the last time it came back.

Thanks again for your continued thoughts and prayers, they mean the world to us!

Turning the Page

2008-08-08T13:05:00.003-06:00

Today we had great news from the O.R. Drew has no new tumor growth and they have confirmed the tumor that they were thinking was dead last month is dead. We are now waiting, for what we think, is Drew's last chemo. It will get started about 4 PM today. We are very excited but cautious as we have been down this road before. I can't believe the amount of strength this kid has, it's been so inspiring! The last year and a half has been challenging but has brought our family close together. We are happy to turn the page on this disease and only hope we don't have to turn back.

Thanks again for all your thoughts and prayers, we wouldn't have made it this far with out you. The journey has been a long and hard one, but in more ways than you know a lot of good has come of it!

A Birthday Gift for Heidi

2008-07-12T09:16:00.004-06:00

Yesterday, Drew underwent his exam under anaesthesia. The news was wonderful, no new tumor growths and more importantly the tumor they were concerned about is dead. Dr. Christiansen said that the tumor is nice and flat and has scared over (which is exactly the way they would like to see it). After the exam we proceeded to 5B for chemo. Dr. Neglia, Drew's cancer doctor, was satisfied enough with the news that he dropped one of the three chemo drugs out of Drew's regiment. In addition, the doctors have decided that August will be Drew's last chemo session (assuming we get the same results from the next eye exam). As mentioned before it's bitter sweet for our family, there's comfort in knowing that the process we are going through now works. However, after Drew's next round, his body is on it's own and we hope that it has matured enough to surpress this disease for ever. I know Heidi isn't too big into birthdays but the good news came 12 hours before her birthday and I'm sure this news was the gift she wanted. Happy birthday Heidi!

We go in for what we hope is Drew's last round on August 8th. This month can't go fast enough, we look forward to turning the page.

Thanks again for your continued thoughts and prayers!

A Much Needed Break Before A Big Week

2008-07-07T13:15:00.002-06:00

This past week has been awesome, Jack and I were able to head up to my parents lake place to enjoy the 4th on the lake with plenty of fishing, tubing, swimming, etc……Heidi and Drew were able to head to Bob and Rose’s lake place to take advantage of the swimming pool and nice weather. Since Drew’s counts are lower than a normal child, he must only swim in chlorinated pools in order to prevent a bacterial infection. While this separation stuff has been our norm, it still gets you a down that you can’t always be together as a family.

This is a big week for Drew, he will have his eye exam under anesthesia and go in for chemo on Friday. Assuming that the eye exam comes back with favorable results (similar to the last two exams), this could be Drew’s last round. We are optimistic but cautious as this road is all too familiar. It’s sad to say but since we know the chemo is doing its job and there haven’t been any new tumors, parts of us doesn’t want to stop what has been working. We can only hope that this is where Drew turns the corner and we do nothing but look back on this as a bump in life’s journey.

Your continued thoughts and prayers are appreciated!

Rain and Shine - We Ran for the Cause

2008-06-29T16:25:00.003-06:00

Thank you to everyone who came out to support Drew at the Time to Fly and to all the spirit runners (those who donated). We raised over $7,600 and have 60 people particpating in this event. We won the award for Most Funds Raised by a Family Team! This is nothing short of amazing and we appreciate it. Thank you from the bottom of our hearts!

Feeling Better

2008-06-25T08:37:00.002-06:00

Drew is starting to feel better and get his energy back. His counts have bottomed out, and are on their way back up. He is running around torturing Jack. Things are back to normal. If all goes well, he will be at the Time to Fly on Saturday, wearing his survivor shirt. For those of you who missed his guest appearance on TV, here is the link to watch it online. We look forward to seeing everyone on Saturday! Thanks again for your continues support:)

http://www.showcaseminnesota.com/show/client_article.aspx?storyid=515719

Taking the Good With the Bad

2008-06-15T15:35:00.007-06:00

We got excellent news from Dr. Christiansen on Friday. The tumor in the right eye has shrunk by 50%. The doctor even thinks it may be inactive, however, he lasered it to be safe. There were no new tumors and no activity in the old tumors.

We met with Dr. Neglia, Drew's oncologist, and he wants to do at least three rounds of chemo. His rationale is to make sure the tumor is died. If we stop treatment too early, the tumor could become chemo resistant making the chemo less effective in the future. He will, however, drop the most potent drug from round three. This drug has the most long term side effects.

Now for the not so good news. We hit a bump in the road to the second round of chemo. We started the nausea medication at 9:00 on Friday evening in prep for chemo around 10. We were running the saline flush, when Drew started screaming that it hurt. He cried until we called Papa Bob, then cried to Papa Bob that is hurt bad. Heidi called in the nurse, because this was unusual for him to get this upset. She looked at the port sight, and realized the needle was leaking fluid under his sign. His chest around his port had puffed up like a water balloon. They had to remove the needle and re-access his port. This was a major task on a tired 2 1/2 year old, he was extremely upset. There was a lot of biting, screaming at the top of his lungs, hitting everyone and even kicked the pregnant nurse in the stomach. I think this is the worst thing I have had to experience this far. It took four people to restrain him, so we could get his port re-accessed. We went back to the room and he continued to be hysterical, saying it hurt again. We pulled up his shirt and the fluid was leaking under his skin again. At his point, Drew was inconsolable. No one but Mom could come with 8 feet of him. They had to give him a sedative, to relax him. At this point the resident decided to get an x-ray to get a picture of the port. One of the nurses stopped her, and told her that it wasn't the needle but that there was something wrong with the port. The resident wanted to flush the port again, but I refused until a specialist looked at the port. This was 11:30 at night, so there was no one available. The resident put a call into the pediatric oncologist, who told them not to use the port line until further notified. She asked them to do an x-ray and schedule Operating Room time in the morning to have a surgeon look at the port. This leak in the port was a major deal, because we were minutes from putting chemo into the port. If chemo would have been put into that port, it would have burned all the skin off his body for as far as the chemo drugs traveled. The next morning they tried to get a radiologist to look at the port. They came up to get us and when we were walking down to the test room, I asked if the surgeon would be on hand to replace the port if necessary. The radiologist said no and that we would need to schedule time in the operating room to do the port replacement. She indicated they don't sedate for this procedure. She indicated that all they would do is access his port (a non-working one at that), put liquid through it, and have him hold still for pictures. There was no chance he was going to participate in this process. The oncologist insisted that there was no other way than to sedate him. After she discussed it with the radiologist, they decided he needed to be sedated. Unfortunately, there was 4 transplants going on Saturday and there was no doctor available. Long and short, we would not be starting chemo on Saturday. They allowed us to play hookie on Saturday, and come back Saturday night. Today, Drew went in for a 2 hour surgery where they removed the old port and put a new one in on the other side of this chest. Based on what the doctor could tell, there was a break in the line. He could not go over the same spot, because it was too swollen from the liquid leaking under his skin. Drew now has matching scars one on each side of his chest. In the long run, a small price to pay.

About 1 PM today, Drew started chemo. If things stay on track, he should be out tomorrow sometime about mid to late afternoon. We feel so bad for him for all that he went through this weekend. For the first time in a long time, Drew's eyes showed signs of breaking. Now that he's older, he knows what's going on and as of right now, he trusts no one. As more days come, he'll gain his trust back but it's one of the hardest things to see is your child's spirit break.

Please continue to keep him in your prayers. We appreciate it!

Big Month for Drew

2008-06-10T09:58:00.003-06:00

Friday Drew will go in for his second round of chemo, and we will see how things are working. This will be an indication of how many rounds we will do. Cross your fingers that we get good results and things go as smooth as the first round.

Next week Drew will become a news celebrity. Thanks to everyone's wonderful support and willingness to lace up and run/walk in the Time to Fly, we are the largest family/community fundraising team. We currently have 45 people walking/running in his honor and an additional 23 spirit runners. This is amazing!!! Because of this, they have asked our family to appear on the news on June 19th and 20th. On Thursday (the 19th) the Director will be there to do a 30 second plug for the Time to Fly and Tony, Jack, Drew and I will be there waving in the background. On Friday morning at 9:30 (the 20th), we will be part of the Showcase Minnesota. They will interview us for 3-5 minutes about Drew's fight and our fundraising for the Children's Cancer Research. Please tune in to Kare 11 to see his first TV appearance.

On June 28th, We will participate in the Time to Fly. Drew is signed up to run the Kid's Fun Run, and we are hoping he is healthy enough to be there. He may need a little extra cheering to get across the finish line since he will only be two weeks out from chemo. Please feel free to come watch him cross the finish line at 10:30. We will update the blog if he can't make it.

On other notes, if you are planning to participate or be a spirit runner/walker remember to sign up prior to June 26th. We will update the blog with more details about meeting places etc for the Time to Fly as we get closer.

Thanks again for everyone's continued support. We appreciate it immensely and cannot thank you enough!!!!

It's Official, Drew's Bald

2008-05-28T21:05:00.008-06:00

The last week has been amazing with the boys. They both have managed to stay healthy and Drew's counts were even high enough to send him back to daycare. So far, this round has been much easier on Drew in comparison to the rounds in the past. Heidi and I were even getting a little nervous, wondering if the drugs were doing their magic. Then we were reassured because Drew's hair started to fall out. It started about 5 days ago and everyday thereafter more came out to the point that it started to coming out in clumps. We decided that it was time to shave his head. So we were off to the Sportsmen's to see Ray the barber. Little did Drew know that it would be his last hair cut for awhile.

Up until this point, you wouldn't have known by looking at Drew that he has cancer, now there's no mystery behind the kid with glasses. I'm sure that we'll see a few sympathy stares but what people don't realize is that we look at it as a good thing, a sign of progress towards being cancer free.

He already has a collection of hats, the Twins, the Gophers.......and he loves wearing them. He better, after all he's in a baseball family, so he's got no choice but to love it!

Thanks for all your love and support, we'll update you with any news!

Fund Raiser For The Children's Cancer Research Fund

2008-05-23T13:46:00.006-06:00

Drew has been doing just AWESOME this round. With the exception of a few restless nights, he has been his old self. His counts rebounded this week so we could stop giving him his daily shots and we're planning on sending him back to daycare next week for a few days. This will get him out of the house for a little bit to play with others before we get ready for the 13th. Thanks for your continued thoughts and prayers.

On another note, Heidi and I wanted to post to the blog letting you all know that June 28th is the 6th annual Children's Cancer Research walk/run fundraiser called "Time to Fly"(some may remember that Jack ran it last year). Jack had an awesome time and was able to raise about $600 for a cause that is now near and dear to our hearts. This year we thought it might be fun to organize a Team for the walk/run, "Team Drew Giuliani." So far, we have formed a team with many family and friends but are always looking to add and felt this may be the best way to get the message out. Any funds we raise goes towards research at the U of M Pediatric Cancer facility to help eliminate not only Drew’s type of cancer but many other cancers that affect children.

If you're interested in joining us for the walk/run please visit the Team Drew Giuliani website and sign up by clicking "Join Team Drew Giuliani" located right next to my name!

http://support.childrenscancer.org/site/TR/Events/General?team_id=1650&pg=team&fr_id=1120

If you can't join us, please consider sponsoring Team Drew with a tax-deductible gift to Children's Cancer Research Fund. Simply visit our team page (http://support.childrenscancer.org/site/TR?pg=team&fr_id=1120&team_id=1650) and make your donation through a secure online system by clicking on "Support Team Drew Giuliani" located right above the team's goal thermometer.

In order to sweeten the deal, for all of those that donate, we'll put your name into a drawing to win one of two sets of MN Twins tickets. We have two seats for the 08/12 game against the Yankees and two seats for the 07/31 game against the White Sox. If you win one set of the tickets your name will not be put back in the hat for the second drawing. Best of luck to all those that participate but more importantly thanks again for your love and support!

Love Heidi, Tony, Jack and Drew

Drew is Doing Good

2008-05-19T07:52:00.003-06:00

Drew has been doing very well this round of chemo. He is off all his medication. Tony and I are very surprised at how well he is responding to the chemo. He went through about 5 tough days, and now is back to his old self. He is running around and playing like any other kid. The prayers must be working. His next round is scheduled for June 13th. We will update the blog with any new news.

First Round of Chemo Done

2008-05-12T11:26:00.002-06:00

Drew had his first round of chemo this weekend. It went as well as can be expected. If you would ask him he would say "I knock the cancer off my head!" It is so incredibly cute.

He came home late on Saturday, to a big surprise. Mommy and Daddy have put a playground in the backyard. Thanks to Papa G, Uncle Tom, Uncle Joe and Daddy, who worked hard in the rain on Saturday, he will have a park to play at in his backyard.

Drew had an ok day on Sunday. He hit a wall at 12:00, and only wanted to be held after that. He didn't want to play or watch tv. He is very nauseous and in pain from chemo/port placement. One of the drugs Drew gets causes bone pain, therefore, he is having difficulty standing and drinking (from jaw pain). He is on very strong pain medication, which seems to help some.

About the only thing that cheers him up is Big Brother Jack. He loves to have Jack around. In the morning when he has energy, he chases Jack around. It is good to see him have some fun, in all this misery.

Jack had a rough weekend. On Friday night, he cried himself to sleep because he missed his brother. He just kept saying I want my brother and Daddy back. I felt really bad for him. On Saturday, he told me that we loved Drew more because we were always with Drew and not him. It is hard to explain to a 4 year old that sometimes one child needs you more. We have been trying to reassure him, we love him to pieces. I took him to his favorite park on Sunday, for some alone time. This really seemed to perk him up. Please keep him in your prayers.

The next round of chemo is scheduled for June 13th. We will update the blog with any changes in his condition over the next month.

It All Starts Tomorrow

2008-05-08T10:30:00.002-06:00

Tomorrow is a big day for our family, Drew starts chemo again. While we are not looking forward to the difficult months ahead, we firmly believe that tomorrow is the beginning of the end of this horrible journey. Here is his schedule of events for tomorrow;

Arrive at 9AM
MRI at 11 AM, to double check that no spreading has occurred (no signs that it has)
Eye Exam at 12 PM with laser or freezing
Port placement around 1 PM
Two ear tubes about 2 PM
Chemo therapy around 7 PM (he'll be released on Sunday)

Many have asked what they can do and all we ask is that you continue doing what you have been. We all feel bad for Drew but Jack needs extra prayers as well. He has a hard time understanding why his brother can't leave the house to play, why Drew is tired all the time, why Drew is loosing his hair, why Drew has to get blood drawn two to three times a week, why both Mom and Dad aren't home to put him to bed, why he wakes up and finds Mom and Dad gone and Grandma/Papa watching him, etc.......It's just as hard for Heidi and I to see the impacts on Jack as it is to see Drew go through his procedures.

Thanks a million for all your love, support, prayers, flowers, replies on the blog & cards, they all mean the world to us.

Tony, Heidi, Jack and Drew

Starting Over With Chemo, A Year Later

2008-04-19T06:47:00.003-06:00

Yesterday we met with Dr. Neglia (Drew's cancer doctor) to discuss our plan of attack for Drew's next eye exam in May. We initially were under the impression that the conversation would focus on taking Drew to Philly or Atlanta for radiation plaque therapy but it didn't. Dr. Neglia discussed Drew's situation with doctors from Children's Hospitals in Houston & Los Angeles and they all agreed that Drew should repeat chemo. Here is the justification for going down the chemo path;

There is not enough long term statistical data on radiation plaque treatment. So far the statistics are good but they only go back about 15 years.
Chemo does not destroy vision, radiation does (radiation could even make him blind).
The types of chemo drugs that will be given to Drew (because of the lower doses) do not increase his risk for 2ndary tumors later in life, radiation would by about 40%
We have been down the chemo route so we know it works and what to expect, we don't with radiation.

While Heidi and I don't want to put Drew through chemo again, it is the right decision. His disease is well under control and this is the best option to preserve his long term vision and quality of life. Yes he'll loose his hair, he'll loose weight and he'll spend some long days in the hospital but it's a small price to pay in the long run. This has been a long road for us but as someone once said, "even the longest sausage has it's end."

Thanks for your continued thoughts and prayers, it means the world to us!

A Rough Day for Drew

2008-04-11T16:49:00.004-06:00

Today Drew had another EUA. We hoped for the best, and prepared for the bad. It is hard to get to optimistic, because this is a marathon not a sprint. We did not get good news today, in fact rather tough news. Drew's tumor in his right eye grew. This was very disappointing news. Dr. Christianson consulted with our former doctor (Dr. Olson) while Drew was under, and they felt the best course of action was to do a cut down treatment. I feel like we have come full circle. Just 1 1/2 years ago we were trying to make the best decision possible with so many unknowns. Today was the same thing. We had to choose between radiation and freezing the tumor. Radiation increases the risk of secondary cancer and bone deterioration. The freezing was a 50/50 change the retina would detach causing temporary or permanent lose of his 20/20 vision in his right eye. With the help of the doctors we decided the lesser of two evils was the freezing of the tumors. Tony and I have cried a lot today. Dr. Christianson said a prayer with us before he did the procedure and now it is in Gods hands. Here is what we know and don't know:

They froze the tumor in Drew's good eye today. We do not know how the tumor will respond. Dr. Christianson indicated tumors usually respond well to this treatment.
There is a 50% chance this procedure could cause the retina to detach. This could happen as early as tomorrow or anytime in the next three weeks. If this happens, Drew will lose all 20/20 vision for two to three months. He will still have his peripheral vision. There is a 95% after 2-3 months the retina will reattach and he will get his vision back.
We will repeat the EUA one month from today. If the freezing did not cause the tumor to shrink, we will need to go to Phili or Atlanta for a radiation treatmentThis is about a 1 week procedure.

Please pray for this little boy. He needs it. We will continue to fight for him. We love him so much, and whatever happens this will never change. He will have the best life possible, and we will have peace in that.

Big Day Tomorrow

2008-04-10T14:51:00.003-06:00

As you all know, the Drew's Doctors found a new tumor back in Decemeber and lasered it at that time. In January, that same tumor was still there but didn't regress enough to please the doctors. In Feburary, that same stubborn tumor grew despite the attempts to laser it in January. Therefore they turned up the juice on the laser and hit it again. Tomorrow, we go in to find out the results of the recent laser treatment. While tomorrow will not provide a clear picture of the road ahead for Drew, it will give us a better look at what that road may shape up to be.....Thanks again for all the prayers and nice thoughts, we truely appreciate it!

Stubborn Tumor Grows

2008-03-08T19:09:00.005-06:00

We took Drew in yesterday for a follow up eye exam at the University of Minnesota, Children's. Heidi and I knew something was wrong when it took Dr. Christiansen and hour to complete the exam when it normally takes 30 minutes. While the news could have been worse, we found out that the tumor that they hit with the laser in January grew. The tumor still is small but apparently didn't react the way we wanted it to. Dr. Christiansen decided to hit it again with the laser however he turned up the heat by 50% and the intensity by 300%. Our hope is this will result in the tumor shrinking, however, if it does not we will need to increase the laser treatment next month. Our next step would be to freeze the tumor, and there are risks associated with this type of treatment. Dr. Christianson indicated this is a sign that he is still young and at risk for new tumors. He indicated he still thinks the risks of Drew ending up blind are low at this point. The good news is this tumor will not affect his vision. In addition, there were no other new tumors.

We ask that everyone continue to keep Drew in their prayers. He is a tough kid, but could use the extra prayers. He hasn't missed a beat, he is very active and you would never know he still has cancer. He will keep fighting, and we will keep fighting for him!

Good Report Card

2008-01-19T15:42:00.000-06:00

On Wednesday, Drew went in for his follow up exam with his new doctor, Dr. Christiansen. The eye exam went well, the doctor didn't find new tumor growth in either of Drew's eyes. However, the one new tumor from the last eye exam that they hit with the laser hadn't regressed as much as the doctors would like. Therefore, they had to laser that spot again. Drew will have to go in again in another 6 weeks to keep a close eye on that tumor. This is the exact reason Drew will not have an eye exam pushed out more than 3 months until he is five or six. If not, new tumors could grow too large requiring more Chemo, which for obvious reasons we would like to avoid.

Now that we are past the eye exam, we can now prepare for our trip to Disney World on Tuesday. We gave that to the boys for X-mas and they have been counting down the days. Both of them are just getting over the nasty virus that's been going around and are so excited to see all the characters. Heidi and I can't wait to see Disney World through the boys as this gift was more of a celebration of beating cancer. Both of them went through so much in 2007, we couldn't think of a better way to start off 2008. This is their vacation and I am sure they'll be spoiled, they always are.

We want you all to know that we wouldn't have made it through this journey without every one's love, prayers and support. Thanks again for keeping us in your hearts and prayers!

A Long Road

2007-12-11T10:50:00.000-06:00

I bet everyone is wondering why there has been no postings lately. Well, no news was good news, until last week. Drew had an eye exam and MRI on Friday. The MRI looked good. Unfortunately, they found a new tumor in the right eye. It was very small and they were able to treat it with a laser. It is a minor set back, and we knew this could happen. The doctors indicate that this is just a sign that he is immature and still developing. Any new cells that develop in the eye are at risk for retinoblastoma. The hope is they will catch them in time and can treat with laser or freezing. It was a little discouraging to hear this, however, we have to look at this a small bump in the road. They caught it in time, and were able to treat it. That is the important thing. They will recheck again on January 16th. We will update everyone on their findings when we know. He was able to get his port out, which is a big milestone. He was very happy with that. We saved it, so some day we can show him. He points at the spot on his check and says, "No poke!" We can finally tell him there will be no more pokes there:)

Drew is doing great, and has grown so much. He is a typical almost 2 year old, sassing and fighting with his brother. He has a lot of fight in him, which has come in handy. He will get through this and be a tougher kid for it.

The Best News Ever

2007-07-13T08:07:00.001-06:00

Yesterday was a day filled with stress, anticipation and overjoy. Our lives could have taken a very different turn yesterday, but finally luck was on our side. Dr. Olson found no change in the tumors in the eye. He believes they are all dormant at this time. Even better news came an hour later - No change in the cyst on the pineal gland. Our oncologist was nice enough to read the MRI results right away, and they think the cyst is just an enlarged pineal gland. This is not uncommon in kids with Retinoblastoma. They do not think it is cancerous at this time. They will recheck again in two months, just to be cautious.

Thank you everyone for our love, support and prayers over the last month. We appreciate it immensely. We could not have gotten through this scare without our friends and family. We love you all and thank you from the bottom of our hearts.

We will continue to keep the blog updated on Drew's progress. He is a strong kid and a fighter. Best of all he continues to be a cancer survivor!

2007-07-08T20:07:00.000-06:00

Jack ran the 1K marathon in Drew's honor and did a unbelievable job. Many came out to support him while he ran. We couldn't be more proud of him throughout this whole thing, he has been such a trooper. Jack raised $601 and was in the top 10 for individuals raising money. We want to thank everyone for their love and support for the run, we appreciate it as well as the "Children's Cancer Research Fund." Above are some of the pictures from the day.

This week is a big week for the Giuliani house. Drew goes in Thursday for his eye exam and MRI. While we like to pretend we didn't think much about it over the last three and a half weeks, we have to admit it was difficult to keep it out of our minds. Please keep Drew in your prayers this week as we're hoping for the best. Thanks again for all your love and support!

Jack's First Marathon

2007-06-22T22:06:00.000-06:00

Tomorrow, Jack will be running in the 1k "Time to Fly" event raising money for the Children's Cancer Research Fund. For this event, Jack has raised over $500 that will go to the University of Minnesota to help fight childhood cancer. We couldn't be more proud of him, he is SO excited about this run. He has been saying "I am running to help sick kids get better." Because he's raised so much, he will receive a $50 gift card. Jack has decided to take that money and buy toys for the boys and girls up on 5B. 5B is the Children's cancer floor at the U of M and has been a big part of our lives in the last 7 months. The people up there (patients, families, nurses, aides & doctors) are amazing. We'll post pictures as soon as we have them of his run! Way to go Jack, we're all so PROUD of you!

Not out of the woods

2007-06-17T20:10:00.000-06:00

What can we say, the last 3 months have been awesome and we couldn't be happier as a family. Drew started back at daycare, his hair has started growing back, and we have been able to leave the house when ever we want, to do whatever we want. Unfortunately our worries are back, as last Thursday and Friday brought news we didn't want to hear. Last Thursday, Drew went in for a routine eye exam and MRI. We thought this was to ensure that no growth was present now that the chemo is out of his system. The only thing it ensured, is that this nightmare may not be over. Dr. Olson found some vitreous seeding towards the front of Drew's left eye (this was the worst eye from the start). Dr. Olson is unsure if this is new cancer growth or remnants from what they have killed over the last 6 chemo sessions. All we can do is give it another month to see if the seeding grows. If it doesn't, it's most likely that the cells are dead. If the seeding grows, Heidi and will have to go down the path we were trying to avoid from the beginning, remove his left eye. More chemo would only delay the inevitable. While this is something we've wanted to avoid, Heidi and I have been prepared to travel down this path.

On Friday, we received a call from Dr. Olson with Drew's MRI results. While we hoped we would never have to think about cancer again, we are now faced with the possibility that Drew has a second form of cancer called Pinealblastoma. Apparently the MRI detected a very small cyst in an area called the "3rd optic nerve." So what is the 3rd optic nerve? Well, each eye has a nerve that runs out the back towards the brain. The two optic nerves eventually come together which than becomes the "3rd optic nerve." The "3rd optic nerve" feeds the brain which give you your vision. So what does this mean? Drew will undergo another MRI on 7/12. This MRI will look at that cyst to see if there is any growth. If there's no growth, the doctors will determine the date for the next MRI to reevaluate. If there is growth, a Neurosurgeon will need to go in and remove the cyst. The cyst will be tested for cancer. If the cyst is cancerous, Drew will need to complete another round of chemo.

While we knew secondary cancers were part of this ordeal, we were hopeful we would never have to deal with it, especially so soon. On Friday, hearing the news that cancer may be in a different part of Drew's body crushed our family's mending hearts. Please pray for Drew, he needs all of our prayers. We are so proud of how far he has come and can only hope that 7/12 brings us tears of joy. We love you Drewbug!

Please keep Jack in your prayers as well. He has been the best brother one could ever wish for. We are equally as proud of Jack for what he has endured through this journey. I don't know a three year old that has had to sacrifice more than he has in the last 7 months. We love you buddy!

As always, thanks for all the love and support.

First Eye Exam After the End of Chemo

2007-05-17T09:39:00.000-06:00

Drew had his eye exam today and the was good news. No new tumors have been found and there is no new activity in the dormant tumors. Looks like he is on the road to a full recovery. He will have another eye exam next month to determine if there has been any change. He is feeling great and loving being a part of the world again. He got to re-meet all his aunts, uncles and cousins. Monday he will get to go back to daycare. Life is returning to normal for him.

Time to Celebrate

2007-05-04T18:20:00.000-06:00

My first Dairy Queen!

Brighter Days:)

Toilet paper fun!

Drew is doing good. His counts are starting to come back from the low point. He is slowing getting reintroduced to the world and loving it. Nothing but good news to report so far this month.

The Last Treatment

2007-04-22T20:16:00.000-06:00

Things are definitely getting brighter for Drew. Dr. Olson feels the tumors are dormant, however, will continue watching for new growth. He was very positive about Drew's progress. He will continue to see Dr. Olson for eye exams under anesthesia. They will watch for new tumors and any change in the dormant tumors. He is fairly confident there is no activity, but will continue to monitor him for the next five years. The hope is if a new tumor surfaces, they can catch it early enough to treat it with freezing and lasers. This would help avoid another round of chemo.

Drew had his last chemo treatment on Thursday and Friday. It was a very emotional couple of days. Dr. Steiner and Dr. Lund, the oncologists, started Drew out on this process six months ago, and they were there to bring him full circle. There was a lot of celebrating. The nurses bought Drew a gift, balloons and made a sign for him. They have been so wonderful over the last six months. They were so caring and compassionate to Drew. There are not words express the amount of gratitude we have for them. They have a difficult job, and they are an amazing group of people. They cried tries of joy with us on Thursday and Friday that Drew was all better. We will miss the immensely. They have been such an important part of our lives over the last six months. They have touched our lives and hearts in ways you can never imagine. How do you thank the people that helped save your child's life?

What's Next: We need to get through this next month. Drew will have a blood transfusion on Friday, and potentially a platelet transfusion the following week. We will work with the oncologists until his counts are back up and his port is removed. He will get monthly eye exams for a while, then move to bi-monthly and then every three months for the next five years. His port will be removed, when we move to bi-monthly eye exams. At this time they will do another PET scan and MRI to make sure there is no more cancer. He will see an oncologist every six months, for thorough exam to make sure there have been no long term impacts of chemo. These risks include bone cancer and leukemia. He will see the oncologists for the rest of his life. He will see the Pediatric Optomologist every six months to access vision. At some point we will patch the right eye to build strength in the left eye. This all seems like a lot, but really it is just precautionary. For the most part he will live a normal life. Once his counts are back up, he will be able to go back to a normal life. He will no longer be in isolation!

Six months ago we sat here crying tears of sadness wondering how we would get through this, and now I sit here crying tears of joy. You did it Drewbug. You have fought the toughest battle in your life and have won. You are a CANCER SURVIVOR. We are so proud of you. We love you so much and can't wait to spend the rest of our lives watching you grow-up.

We will continue to update the blog until he gets a clean bill of health. Thanks you again everyone for all your support and prayers.

The End of the Road

2007-04-18T20:29:00.000-06:00

Tomorrow Drew will go for his last chemo round. What a milestone this is for our family. As I look back through the blog, I remember all the heartache and pain of this journey. I remember the first round like it was yesterday, yet it seems light years ago. I look back and think about the family we were then, and how different of a family we are now. We are way stronger than I ever imaged we could be. We look past the little things, and value each moment with each other. This has been the defining moment in our lives. As a family we would get each other through this incredible journey. Each taking turns carrying the weight of this burden and finding the strength within to forge forward. Here we are at the end of the journey, and I can only reflect now on the impacts to our lives.

The number of people that have touched our lives throughout Drew's journey is humbling. Where do you begin thanking all the friends, family and strangers that have taken this journey with us. It is your support that carried us through this, and we could not have done it without you. Each and everyone one of your are amazing. Thank you from the bottom of our hearts.

To My Mom and Dad: I love you so much. I use to having a saying with my parents "NLM" which stood for "Nobody Loves Me". As a little girl I would tell them NLM and they would give me a big hug and say "I do". Little did I know later in life the strength of that love would carry me through the most challenging of times. You have made me the person I am, so I thank you. You have taught me to be strong and fight for what I believe in. It is these lessons that allowed me to fight so hard for Drew.

Tony's Parents: You have been so amazing through this entire process, and we love you. You have taken care of us during the worst of times, laughing with us and crying with us. Thank you for always being there. We could not have gotten through this without your love and support. You have taught us so much about unconditional love not only through your words but also through your actions.

Our Sisters & Brother-In-Laws: "We are family, I got all my sisters with me". Little did I know what these words would mean to me some day. You have been with our family each and every step of the way, supporting us through this journey. I thank God for giving me such an amazing family. I have been blessed. Sisterhood is a bond that can never be broken, only strengthened throughout time. Thank you for your amazing strength and support during this process.

Joe & Rochelle: Thank you for coming along with us on this journey and for always focusing on the positive. We needed this positive energy, when we wanted to fall apart. Thank you for being our cheering section, even when things didn't always seem on the winning end. You have taught us what positive energy can do. We love you both so much. We are lucky to have you be a part of our lives each and every day.

Our Nephews & Nieces: Thanks for making us smile. For helping entertain Jack and for all those innocent little prayers. God must be listening to your quiet voices, and answering you. Drew will get better soon and playing with you soon. We love you. Hugs and kisses.

Tony: You are an amazing husband and definitely my better half. Silently you picked up the slack, when I was too tired to go on. You have given me the strength to keep moving forward to a bigger and better future. You are unquestionably the best father in the whole world. Our kids are lucky to have you. Thank you for always being there for us.

Jack: Buddy, I love you. You are so strong and so willful. These traits will get you far in life. I am sorry you had to experience something so scary this early in your life. You have been such a trooper. You have made us laugh, when we wanted to cry. Thank you for all the giggles. Each hug and kiss got us through the rough days. WE LOVE YOU TO THE MOON AND BACK.

Drew: My little peanut, wow are you strong. I was so scared for you. As your Mother I wanted to protect you from all the bad things in life. You have taught me that my job is not to protect you, but to guide you through the rough spots in life. We will always be here to love and support you. You are strong and resilient, hang it there we are almost done with the worst part of this life long journey. WE LOVE YOU TO THE MOON AND BACK.

Friends, Extended Family, Co-Workers, and Strangers: Thank you so for helping us through this journey. Each one of you have touched our lives, and we are forever changed because of it. The out pour of support and prayers from everyone has been overwhelming. We thank you from the bottom of our hearts.

Please keep Drew in your prayers tomorrow and the upcoming months. He will end the chemo process tomorrow, and start the life long journey of being a cancer SURVIVOR. This will not always be an easy road for him, there are future risks associated with his path in life. We can only hope for the best, and thank God for giving us a second chance at having him be a part of our lives.

Feeling Lucky

2007-04-02T19:27:00.000-06:00

We are feeling exceptionally lucky this round. Drew is still doing well and has remained out of the hospital. He hasn't got sick this round, and we are knocking on wood that he stays healthy. If all rounds could be this easy, it would make this process a lot better. Drew will go for a platelet transfusion this week, and his counts are bottoming out. Once we get through this week, he will be on the up swing from this round. Only one round to go and we start the post-Chemo process. We are almost there. There is a light at the end of the tunnel and we are fast approaching it:)

Blood Transfusion Day

2007-03-30T07:47:00.000-06:00

Drew is doing amazingly well this round. He has been full of energy and relatively happy. He is getting very close to walking and becoming more of a dare devil every day. He chases his brother around and copies everything Jack does. They get along so well, it is fun to watch them build such a strong bond.

Today we go to the clinic for a blood transfusion. Hopefully all will go well. Each time we go, Drew picks up some virus and ends up in the hospital two days later. We are hoping to avoid this, as he is so much happier at home. Today will be a long day for him, but the end result is always good. He is such a trooper. I have never in my life met someone who is so little, but so strong and tough. We love you Peanut, you are almost done.

Another Round Down

2007-03-24T18:00:00.000-06:00

Drew did well with his fifth round of chemo. He is still eating and drinking, so this is a good sign. He is home and doing well. There has been no change in the tumor in the left eye since last round. This is good news, because this indicates the tumors are most likely dormant. Dr. Olson thought we probably would not see any additional shrinking of the tumors. The type of regression pattern is similar to a hard crystal rock. Dr. Olson will monitor it for any changes in shape or size. Drew will go for his last round of chemo on April 19th. Until then we will work hard to get him through the rough spots of this round. He is scheduled for a blood transfusion next Friday, and we anticipate a platelet transfusion the following Wednesday. Hopefully this will be his only visits to the hospital before April 19th.

Thank you again to everyone who is praying, thinking of and sending their love to Drew. He is almost done with the worst part of this lifetime journey. We and Drew couldn't have gotten through this without everyone's love and support. Thank you from the bottom of our hearts!!

No News is Good News

2007-03-21T18:47:00.000-06:00

I am sure by now everyone is worrying if we have fallen of the face of the earth - No news is good news for us. The last couple of weeks have been very uneventful. Drew has been doing wonderfully - eating a ton, drinking everything in sight and playing hard with Jack. The only thing he is not doing is sleeping, which is not unusual for a kid of ours.

The most eventful thing in the last two weeks is the new pair of glasses he is sporting. He went to the Pediatric Opthamologist, for his first of many eye exams. His right eye has 20/20 vision in it. The left eye is undetermined at this point. We know he has no 20/20 vision in his left eye. The way vision is assessed is to patch the right eye and show him a series of pictures. Drew is not a willing participant in the right eye being patched. Due to limited vision in the left eye, he gets really scared when you cover up the good eye. He screams and cries until you uncover the right eye. Until he gets older and will allow the patching we will not be able to determine the vision in the left eye. Regardless of the vision, he will wear glasses to protect his good eye. It is very important for him to wear the glasses, however, he could care less. We put them on, he throws them off. We figure we will be the Norm of the eye glass store, frequently visiting to fix glasses. Options are limited for a kid his age, and Tony and I definitely disagree on what is fashionable. Tony wanted a plain pair and the lady informed him, "They don't do boring". We finally found a pair that did not cover his whole face.

Tomorrow is round five of chemo. We are anxiously awaiting the progress report. Only two more rounds and he is done with chemo. This will be cause for celebration. He is a trooper, being so tough through this entire process. Almost done Drew-Bug, hang in there. We love you to the moon and back.

There's No Place Like Home

2007-03-06T20:55:00.000-06:00

Drew was released from the hospital today. He still has a cold and a little bit of the cough. He is in better spirits. They are not sure what caused the fever, since all tests came back negative. Most likely some sort of virus. Unfortunately they have to take all precautions and admit him, whenever he has a fever.

We are just happy to be home. Drew can crawl around and play. Tony and I can sleep in a comfortable bed, without monitors going off all night. Jack gets to have Mommy and Daddy tuck him in tonight. It is the simply things in life you forgot about, until you don't have them. It is just nice to be together as a family. The best cure for sadness is laughter, and it is wonderful to hear to little giggles in the house again.

Home Sweet Hospital

2007-03-04T22:15:00.000-06:00

Drew is back at his home away from home tonight - the hospital. This round of chemo was going so well and we had our hopes up that he would remain healthy. Friday he had another transfusion and we thought that would help his unpleasant demeanor. Unfortunately his new found crabbiness was for other reasons. He had come down with a bad cold and cough. This morning he had a temperature of 101.2, which meant back to the hospital. They have him on IV fluids and antibiotics. So far today he has been put through a urine sample, RSV test, chest x-rays and blood work. So far all tests have been negative. He is in isolation at the hospital. Let's just say it has been a very long day. He spent to bulk of his waking time crying. He looks and feels awful. He is crabby because he has to be contained. He cannot crawl on the floor, because there are too many germs. He can not leave the room, because he puts other cancer kids at risk. I have learned it is quite difficult to entertain a one year old on a hospital bed for long periods of time.

Tony came up to the hospital tonight to switch. Tony will spend tonight and tomorrow with him, and I will relieve Tony tomorrow night. Tony has a long night ahead of him. He is tired and burnt out. Unfortunately there is no break for us. Tony has been so wonderful through this entire process. He is the most amazing father. He gets up every night with Drew, singing and rocking in the middle of the night just to provide some comfort. I wish I could make this easier for him. Jack and Drew are so lucky to have him.

Jack came with to the hospital tonight. He didn't want to leave. He said he needed Daddy, Drew and Jack time. I feel so bad for him. On the way home he told me he's sick and needs to go to the hospital. He wants Chemo Crusader to fix his fever, so he needs to go back to the hospital. He is not sick, just missing his dad and brother. When we got home he said' "Mommy, I am worried about Drew's sick." I'm not sure if he understands want this means, but I think it is his way of expressing that he is scared. I wish I could make this easier for him.

Tomorrow is another day - One day closer to the end of this process. Each day brings it's challenges and rewards. At the end of the day, We are lucky to have been blessed with two wonderful children. Each day we thank God for them. We remind each one of them that We love them to the moon and back. Hang in there Buddy and Peanut, there are brighter days to come.

Good Report Card From Dr. Olson

2007-02-23T17:41:00.000-06:00

Prior to round one of chemo - Left and Right Eye.

Prior to round two of chemo - Left Eye.

Prior to round three of chemo - Left and Right Eye.

Prior to round four of chemo - Left and Right Eye.

Drew has now completed his fourth round of chemo. Each round gets easier, and I would say this round went the smoothest. We got excellent news from Dr. Olson, the eye surgeon - The right eye looks great. The tumors are dormant and his vision is in tact. Good news on the left eye too - The vitreous seeding has almost completely regressed. This is the area of greatest concern. The picture above shows a large mark in the front of the left eye. This is almost all scar tissue. There is only a small part of the tumor attached to the scar tissue. The scar tissue will not shrink or impair vision. The tumor in the back of the left eye has shrunk into a small crystal ball. This is one of the most favorable regression patterns. This is amazing because this is the only tumor not treated by laser or freezing. It has also pulled away from the optic nerve, which limit risk of the cancer traveling outside of the eye. Dr. Olson will treat this tumor with laser next round. Unfortunately, this tumor will probably not shrink much more. It will go dormant, however, it will remain in his 20/20 vision. This means there is little hope of having any 20/20 vision in the left eye. The up side, his peripheral vision in his left eye is good. Dr. Olson thinks he will come out of this will relatively good vision and there is a 90% chance we will save the left eye. We have now turned a corner to being very optimistic of his prognosis. We are relieved and ready to battle the next few rounds. It looks like Drew will be one of the success stories. The best news we have gotten since we started this process.

Next steps - We will go see Dr. Engel, the doctor who originally diagnosed Drew, for a vision check. Over the next couple of rounds of chemo we will start to access the vision he has in both eyes. We will at some point in this process fit him for glasses. He will wear glasses for the rest of his life to protect his good eye. This is extremely important. He will complete the full six rounds of chemo. In May we will start the process of watching and waiting. For several months after chemo ends he will go in for a eye exam under anesthesia. When Dr. Olson feels things are all dormant, he will spread the eye exams out to two months apart, then three months. For the next three to four years he will have eye exams under anesthesia every three months. When all is clear, he will be considered in remission. For the rest of his life he will regularly see an eye surgeon, opthomologist and an oncologist. The oncologist will monitor him for long-term affects of chemo. With regular visits to these doctors our hope is Drew will become a normal, happy, healthy kid. There are blue skies to come for him, and he will be here to enjoy them!

The Cold Before the Storm

2007-02-21T17:21:00.000-06:00

Tomorrow Drew starts round four of chemo. It barely seems like round three is over. We have come down with the bad cold that is going around, and it is quickly cycling through the house. Jack is home sick, and Drew is on the rebound from it. I unfortunately am in the thick of it, and Tony is starting to feel it coming on. Hopefully it will pass quickly. We check into the hospital for the eye exam under anesthesia at 5:15 am. We are praying for good news. Please keep Drew in your prayers the next couple of days.

Happy Little Boy

2007-02-16T10:36:00.000-06:00

Drew is full of energy and having a ball the last week. He is really feeling good. Here are some updated pictures.

Home Again

2007-02-09T09:27:00.000-06:00

Drew is home and doing well. He is back to his old self again. We are all happy he is through this rough spot and can have some normalcy before round four. We are officially through round three, and half way done. Thank you for all your prayers and thoughts. We are one round closer to recovery:)