Hi, it’s been awhile….

legoI know it’s been awhile since I gave an updated. There’s a couple of things going on which has kept me quite busy. I will let you know what they are once we get more information.

Jonathan is doing well. He really is a fantastic kid. I know he’s mine and all parents think their kids are fantastic, but he amazes me everyday. He handles chemo like a pro and now at home, he is hooked up to four

Continue reading

Choriocarcinoma….

cancerWell, I received the final pathology results today. Jonathan has a second type of cancer called Choriocarcinoma. This is more rare than Pancreatoblastoma (which there are only 200 cases) and usually occurs in pregnant women or older adults. CHOP has put out feelers to other hospitals on this type of cancer in children and they haven’t heard one response yet.

Continue reading

A miracle?

birthdayJonathan got out of the operating room at 7:30 pm. The mass in his bowels and abdomen were NOT tumors. It was a lot of scar tissues from his previous Whipple procedure, lots of blood, and his bowels twisted. I didn’t mean to scare anyone, but I had 5 surgeons come into his PICU room today before the operation and say that they were sure that it was tumors and that the thought of it not being that was pretty obsolete from the

Continue reading

Doctors, doctors and more doctors…

doctorI know it’s been a long time since I’ve updated, but it hasn’t been quite in the home front. We’ve been very busy with doctor visits. I’ve been waiting to update the Care Page because I wanted to get a handle of things, but we are still pretty much in the dark. It’s been 3 weeks of blood work, CT-scans of Jonathan’s brain, sinus, chest, abdomen, and pelvis. An MRI of his brain. Jonathan is going through precocious puberty. Yes, puberty at the age of 6. He has oily hair that needs to be washed every night, a deeper voice, and a couple of other changes. We thought it was a rare side effect of his

Continue reading

Can’t sleep …

sleepTonight I got notice that another friend of Jonathan’s is dying. His name is Dante and there are no words or actions that I can do to help him. He’s only 2 years old and diagnosed with Neuroblastoma. Since Jonathan has been diagnosed we have met many wonderful families and children. Angel Jake, Angel Dylan, Angel Alan, Big Nicholas, Little Nicholas, Braeden, Dante, Elli, Iva, Jack, Oliver, and Emma. Three have passed on to become Angels, 6 including my son Jonathan have had their cancers come back, 3 are in the maintenance phase, and only 1 has

Continue reading

Disney Trip …

Disneyland Paris Magic Christmas Season LaunchWell, where do I begin. The kids had a fantastic time at Disney. We stayed at a place called Give Kids The World. It’s a foundation started by Henri Landwirth, a holocaust survivor. He wrote a book called The Gift of Life and I read it in 2 days after I put the kids to sleep. The website for this foundation is: www.gktw.org It’s an amazing place. While staying there you forget what the real world is all about and you feel as though your in a

Continue reading

Benefit….was AWESOME!

balloonThe benefit for Jonathan on Saturday evening was AMAZING! It was beyond what we could have ever imagined. It took the help of many kind-hearted people to bring such a big event together. I wanted to thank every person, volunteer, teacher, family, and child that attended and helped. Your kindness and support mean so much to me and my family. It’s been a long 20 months of emotional ups and downs, but it’s so refreshing to know that we have so many friends pulling for us. I hope that everyone who attended had as much fun as we did. It’s been a long time since my husband and I have laughed so much! It was a night of magic and of putting all our worries

Continue reading

We’re home….

homeWell, I just got back not too long ago from clinic. Jonathan got his dose of Tariquidar and Vinorelbine. The Tariquidar is the clinical drug from London. It is not actually a chemo, but a med that magnifies the chemo to work better at killing the cancer cells. The drug came in a glass vial and it had to be broken to get to it so they used a filtered syringe to take it out and also used a filter on the IV to administer it to Jonathan through his port. It really came to light how trial this medicine is. While Jonathan was getting it I

Continue reading

Posted Aug 20, 2008 10:06pm

dear-santaNothing new, but I just thought I’d share a funny story. I’m on the computer and Jonathan is next to me. He wrote out his Christmas list already. I’ve already told him that Christmas is not until 4 months away. On his Christmas list is tons of Star Wars Legos, The one that he wants most is Lego Star Wars Ultimate Collector’s Millennium Falcon. The thing cost $499.99 (Doesn’t Lego realize that kids buy these things) Anyway, I told him that just because he writes it on his

Continue reading