Great Update about Ethan!

Yeah!!!! Our PHriend, Brian Rossi, posted the follow update about Ethan...

We are praising God at the moment! Pardon us! Ethan's doctor called, I put the phone on speaker and she said "IT'S GOOD NEWS". She then explained that Ethan has an "Osteochondroma". The likely cause of it is the full body radiation he received. It is a benign growth and poses no immediate harm/risk to Ethan. She said that surgery to remove it would only occur if and when it ever posed him any discomfort, pain or mobility issues. At this point, there are no follow up plans. We are to keep an eye on it, but for now she is labeling it "yet another Ethanism that makes no sense". ;-)

Yay! Happy House! Happy Hearts! Thank you Lord!

A nice message to start the New Year off with...

Elle's Updates

Happy 2012!

Today marks the 3rd anniversary of the removal of Elle's tumor-ridden left kidney. You may recall it was 10 hours in the O.R. followed by 14 days in the hospital. We thank God for pulling her through that operation, the recovery, the rest of her treatment and for restoring her to health.

We are all doing well. Elle made her First Confession a month ago. Her semi-annual scans will take place in early February.

May each of you enjoy a peaceful and prosperous 2012!

Tim, Suzanne, Hope, Faith and Elle

Message From Krysta, Our 2010 Pedal Partner

Hey Everyone!

This year I am participating at my Relay for Life at Syracuse University! For the past two years I have been wanting to go to Syracuse for Fashion Design, it was my dream school and I made it here! I absolutely love school. Since being here I have joined a sorority, my club gymnastics team, taken a dance class (I have my show coming up next week!) and joined the Relay for Life committee. My friends and I have started a team and now I need your help!

Ever since being diagnosed with cancer I have learned more than I could ever imagine. I have lost so many friends to this battle and with each one it does not get easier. I am very fortunate to have made it through chemo and radiation and now it is my goal to spread cancer awareness and raise money for research.

Over the summer I was introduced to a girl through a mutual friend who had non-hodgkin's lymphoma and was going to be a freshman at Syracuse as well! We became friends grabbing dinner here and there just to talk about cancer stuff. We both were on the committee for Relay and she finished her treatment and was cancer free in December right before the first semester ended. We weren't even back a week into second semester when she texted me that she had relapsed and would have to take the second semester off to get treatment. I would be heartbroken if I was ever told that I needed to leave Syracuse to get more nasty treatment. We planned to walk the survivor lap together this year, and unfortunately I will have to do it alone. This year I relay for my friend Heather as well as all of those I have lost and those that I have become friends with because of cancer. I hope that next year Heather and I will walk the survivor lap together as we planned. Relay is only 10 days away! Please donate and help find a cure to cancer. Your dollar could be the dollar that finds the cure. Here's the link!

http://main.acsevents.org/site/TR/RelayForLife/RFLFY11EA?pg=team&fr_id=29299&team_id=928695

Thank you for all of your help and support! <333 Krysta

An Official PHAT Welcome

Team PHAT Tuesday is proud to announce their 2010 Pedal Partner, Krysta K..

Krysta, a 17 year old high school senior, was diagnosed with Hodgkin’s Lymphoma in December 2008 at the age of 16. She had a tumor the size of a pineapple that had crushed her left lung and was pushing on her heart. In addition, she had a smaller tumor in her right lung. Krysta underwent 12 weeks of chemo therapy and seventeen days of radiation.

The following is part of a note Krysta wrote us:

“…. Thankfully, Hodgkin’s is like the baby of all cancers and is extremely curable so I was able to have a short treatment. On the downside, cancer totally distorts your life, and getting back to normal is one of the hardest things to do...I still don’t think I've hit normal yet. During the 4 months that I spent undergoing treatment, I made quite a few very close friends. Last October, one of them passed away, and right now, one of them has relapsed. At this time, I have had my one year off chemo scan and I'm just taking it one day at a time. My friend who has just relapsed also has Hodgkin’s, and so it has been such a reality check for me that cancer can come back, even the baby kind. You are never done with cancer, no matter how much you want to be. I love the idea of the PMC because it raises money just for the Jimmy Fund, who gives us a lot of fun things to do when we are getting treatment. I painted pottery, made bracelets, followed their bead program, watched movies, used their iTunes program, and went on the spring training trip to Florida. There are not enough words to say thank you for giving all of these opportunities to me. It is because of you riders and the money you guys raise that make treatment less difficult. These are all things that I looked forward to. They were the upside of treatment. Thank you for riding! I am really excited to be apart of PHAT Tuesday!” - Krysta

Krysta is graduating from high school in June and plans to attend Syracuse University in the fall to study fashion design.

We are very happy to welcome Krysta to the PHAT Tuesday PHamily! Her story brings a different outlook to our team, that of thanks and hope. She is proof to us that our commitment to the Pan-Mass Challenge and the funds it raises for the Jimmy Fund are making a difference in the lives of cancer patients and their families. It also reinforces to us that there is still more work to be done.

Welcome Krysta!

Jake's Recent Updates

Jake's mom, Kim recently posted the following update.

Cancer World Stinks!

Posted Oct 8, 2009 11:03am

That is a given on any day but I'm finding out today that yesterday was particularly bad. Nothing changed for us at clinic but we saw 2 of our long time patient friends there yesterday and found out this morning that they both got not great news after their appointments. Please say a few prayers for Charlotte and Kira who don't deserve any of this. Both kids looked great and it is hard to hear the news.

Yesterday at clinic was like old home week-yes crazy that is how we see clinic sometime. We saw so many of our old friends on and off treatment that have been living this as long or longer then us. Jake joined a pizza party with his friends Chris and Hayley and was happy to see so many others. I love to see the kids making the best of this situation. It was great to see Maddie and her mom Paula who is one of our inspirations since she just passed her one year off treatment visit from the relapse protocol that we are on right now. Yay maddie! She looks beautiful and Jake even blushed a little when he saw her. :)She gives us the hope we need for the future.

Jake has been feeling good still. His night terrors stopped shortly after I posted last, which was a relief. He is back on steroids this past week and has been eating like a champ. He has gained a few pounds which will be a good buffer going into this next more difficult cycle where he likely will lose some weight. His blood counts were great and was able to get his last dose of chemo for this cycle. Next week he will move into the next phase which runs for 24 weeks(until we hit our 1 year mark) Next Wednesday he will have to begin going inpatient again pretty frequently. He will start off with the very tough Ara-C which is the one that drops his counts to nothing for an extended time. So I will be gearing up to bunk at Chez Children's for planned and unplanned stays. We will also have to start the blood thinning shots daily next week again and and GCSF shots too so we will be back to 2 shots a day many days. He is not happy about this in the least. Neither are we! He still has bruises all over his legs from the last round. The alternative is that the clot in his heart gets bigger and that is just not an option in our book!

For now we will enjoy our last weekend of unbridled fun, sports, etc before the shoe drops. I am just so thankful for the summer we had and that he has been able to be in school for the first 6 weeks to get settled. I never thought that would even happen. We got some pictures in the mail yesterday that were taken at Hole in the wall Camp(courtesy of Flashes of Hope) of our beautiful bald boy. I will post one in the photo gallery soon! It show how far he has come even from July. Thanks for checking in!

Prayers for all our friends, please...

Love, Kim

You can keep up with Jake's updates at www.carepages.com/carepages/JakeMaguire


PHAT Tuesday

An update from Kira's carepage

Below is the reason PHAT Tuesday rides the Pan-Mass Challenge. Kira Corning, a member of our PHAT Tuesday PHamily and our 2006/2007 Pedal Partner.

Not as planned

Posted 10/08/09

We just got punched in the stomach again. Although the preliminary read of Kira’s MRI said her spine was clear, the senior radiologist noticed something showing up, a very small enhancement, in her lower spine. Unfortunately this was noticed after we were told stable last week and long after Kira was out of the MRI machine. Now this could be a blood vessel as it isn’t presenting as a typical tumor. Kira doesn’t do anything “typically” so no matter how much they are trying to tell us they aren’t alarmed, and that this is just “unsettling” and not alarming, we are sick to our stomachs. Bottom line, we need to get more pictures and some cross sections to determine what this enhancement is in her spine. The plan is to get another MRI of brain and spine, with thinner slices and do it hopefully in 3 weeks as her end of treatment MRI. And hopefully, fingers crossed, this will actually be just an end of treatment MRI and not the start of something new.

KIRA KNOWS NOTHING about this. She doesn’t need to know. They’ll redo the MRI and then we’ll either be done, or figure out the next line of treatment. Until we figure out what we have, we are just going along as “normal”. Yeah, easier said than done. Our oncologist did go over some advances they have made thanks to people raising money for them to do research. So if you donated to Kira’s Kruisers recently, you’ve really helped us out! Our team has contributed over $83,000 to research. If this is not a blood vessel in Kira’s spine and in fact disease, we have a lot of new medicines that we can try thanks to research being done.

Some other friends at clinic got some bad news yesterday too. I just cannot ever get used to hearing our friends continually relapse. Hey, some also got good news too and I’m so very happy for that. Please just keep all our clinic friends in your thoughts.

ENOUGH DOOM AND GLOOM! Kira’s 8th birthday was this past weekend and we had a blast. We went to the RainForest Café for lunch with the Eisnors and then to Cloudy with a Chance of Meatballs in 3D! The slideshow I’ve been using isn’t allowing me the edits I want, so a few comments on the slideshow. There is one picture when Mary sees Kira and basically goes air born into Kira’s arms! Then there’s a few where the girls are looking around SCREAMING during the “rain storm” in the restaurant. It was hysterical!

Copy and paste the link below into your browser to see the slideshow:

http://www.dotphoto.com/go.asp?l=reneecorning&SID=259906&Show=Y&p=

To read more about Kira, you can visit her carepage at www.carepages.com/carepages/KirasCorner

Elle's Updates

This is the latest update from our Pedal Partner's carepage...

This is why we continue to ask for your support...

It's never too late... visit.. www.pmc.org/tp0049

Uncharted Territory

Take a million kids. Maybe 100 of them develop childhood cancer. Out of those, say 10 will get Wilm's tumor. Perhaps two of those will have a form of the disease that doesn't respond completely to standard treatment. Elle is beyond that point today.

The official pathology results were delivered to us earlier today and as many of you have already heard, viable tumor was found in the two nodules that were extracted from her lung. These cells appeared to be completely unaffected by the chemotherapy treatment that Elle has received to date.

It seems that the portion of Elle's disease that remains is a rather rare form - so rare that her doctors are having trouble finding other cases to compare her to. As one doctor put it, one could spend an entire career as a Wilm's tumor specialist and only encounter one or two similar cases.

This lack of case history means that while there are several treatment options available to her at this point, there is no guarantee that any will work - not that the doctors don't think they have a chance of being effective, it's just that with so few like cases, there is no established protocol for eliminating this form of the disease.

That is the bad news. The good news comes from it, and that is that the cells that remain of Elle's original tumor probably have not responded to conventional chemotherapy because they are so slow growing. The standard treatment works on cells that are dividing or preparing to divide, states that normal cells spend relatively little of their lifetime in. The thought is that the remaining cancerous cells aren't dividing rapidly, and so aren't that vulnerable either.

Elle will have a CT scan tomorrow to ascertain what growth of the tumors, if any, has occurred in the ten weeks she's been off treatment. The results will help us determine what course to follow next. If the scan shows no change in the size of the lesions, we will have the luxury of more time to decide what to do. This will likely involve some sort of clinical trial of an experimental drug. If it looks like the tumors have grown or spread, we might put her on a newly developed protocol of standard chemotherapy agents.

We hope to hear on Thursday that Elle's disease is stable. This is entirely possible, and in fact one of the options the doctors were seriously considering was to simply sit back and monitor her condition. Apparently, in the few similar cases that are known, the disease can remain in a quiescent state for years. However, since the experimental treatments that Elle could receive have relatively few side effects, we will probably go forward with a trial in any case.

I will wrap this update up with the medical "so" that has become all to familiar to us over the past few months - so, we do not have a course of action at this time, nor do we even have a medically-based prognosis for Elle. There is just not enough known about children in her situation. We are truly in uncharted territory and will rely our faith and the grace of God to help us make the right decisions about Elle's future treatment. Please continue to keep Elle in your prayers.

Thank you.

Elle Update

New update from Elle's carepage...

The date has been set for Elle's biopsy - next Friday, July 24th. Elle will go in at 7AM. The plan is to pull several samples from one lung; we don't know which side the surgeon has decided on yet. It will be a minimally invasive procedure, but we do not know if Elle will have to stay overnight in the hospital or not.

As indicated in the last update, this biopsy is the only way to determine what the stuff that's showing on the CT scan really is. Of course, we're hoping that it's all scar tissue and/or dead tumor remains. Please continue to pray for that. Thanks!

Pedal Partner Update - Elle B.

This is the latest post on Elle's carepage....

We have returned from a vacation at Grandma's house in Pittsburgh where, unfortunately, internet access is about as readily available as it was in 1989.

As many of you have already heard by other, more traditional means of communication, Elle's recent scan showed something is still in her lungs. It might be live tumor. It could just as well be scar tissue. All the doctors can tell us right now is that whatever "it" is, it has not been growing or spreading - but it hasn't been disappearing, either. There is no way to tell what it is other than by pulling some of it out and examining it, so Elle will get a biopsy sometime towards the end of this month. The exact date is yet to be determined.

We will post an update when the biopsy date is set. Meanwhile, please continue to remember Elle in your prayers. Thanks so much for your support!

Big Scan Coming Up

An update from our Pedal Partner Elle's care page.

On Monday, Elle will get the big post-treatment CT scan that we've been waiting for. Depending on the results she will either be started on another course of treatment, have a biopsy, or be declared cured and have her IV port removed. Naturally, we are hoping for the latter.

I don't think I have to stress any further how important this is. Please join us in a prayer push for Elle this weekend. Just ask for the scan to show no evidence of disease. Thanks so much!

Elle's Final Treatment

Today our Pedal Partner, Elle, received her last chemo treatment. We thought Tuesday was her final treatment. Kevin, Marc, Scott & Tim went into the Jimmy Fund Clinic, but, Elle had already been there gone. She was told that they had to "stay on schedule" and administer the final round on Thursday. Unfortunately only Scott & Tim could make return trip.

Elle had already completed her treament and was playing in the play room with her sisters. We sat with Elle's mom and grandmother and chatted for 30-45 minutes.

Elle liked the stuff Wally the green monster Kevin had picked out. She was quite happy with it whan she pulled it out of the bag. We also gave her a PHAT Tuesday pin. That didn't get as much attention.

It was a nice day all around. Let's keep Elle in our thoughts!

PHAT Tuesday Walks for Jake...

The third grade class of our 2008 pedal partner Jake Maguire organized a "Walk for Jake" this morning in Wrentham at the King Phillip Regional High School.  It was an amazing turnout.  I was blown away to see how the Wrentham community came out to support the Maguire family.  It was truly amazing to see so many join together.

Personally I was very proud at the turnout we got from the PHAT Tuesday team.  We heard about this event in email yesterday and in true PHAT form there were 10 of us that showed up this morning.  Some of us ran and some of us walked.  But we all showed up and had a good time for a great cause!