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Timmy's Team To Beat Cancer

$15,885 of $65,000 goal

Raised by 171 people in 1 month
Created October 12, 2018
Timothy is our fourth child, joining Michael (6) Josie (4), and Stephen (almost 2), born on August 19, 2018.  We had a normal pregnancy and birth, but we saw some odd things immediately after he was born:  Timothy developed strange blue lumps on his abdomen and arm within 2 hours after birth, and between 2 and 3 hours after birth his abdomen was grossly distended.  Not sure what was happening, we called an ambulance and went to the ER. 

A few hours after that, Timothy was diagnosed with Stage 4S neuroblastoma that infested his skin, liver, and adrenal glands.  As his liver continued to expand with cancer, it almost suffocated him as his lungs could not fully inflate.  Yet surgeons would not attempt to remove the cancer in the liver given the risk that he may bleed  too much.  Our only option was to start chemotherapy on his second day of life.  

Timothy’s face has Mom from the eyes up and Dad from the nose down.  He has red hair and loving eyes that show how he feels about himself and us.  Timothy laughs in his sleep and burrows his brow when he’s uncomfortable.  He is amazingly dexterous for his age, reaching out to our faces and hands as he seeks connection with us. And that is AFTER he had a significant brain bleed!  What a fighter.  Timothy makes grumbly sounds when he’s annoyed and clarion cries when he needs a diaper change.  He smiles at our voices and loves when we carry him, sing, and dance.

In babies, neuroblastoma is usually relatively easy to defeat, requiring only 2 rounds of chemotherapy.  But after his first round of chemotherapy, DNA from a biopsy of a skin tumors showed that his cancer was not the standard form, but a high risk form of neuroblastoma.  

There are two ways to treat high risk neuroblastoma.  This cancer has a 40%- 50% long term survival rate regardless of which treatment plan we choose.   Both methods involve 5 initial rounds of strong chemotherapy, followed by surgery to remove whatever masses of tumor are remaining, radiation of the tumor sites, and one more round of chemo, followed by immunotherapy.  

However, the protocol followed in hospitals in the DC area requires that we harvest from Timothy stem cells from and administer 2 additional, extremely severe rounds of chemo.   Because the chemotherapy is so strong,  many patients cannot regenerate their own blood cells without transplanting the harvested stem cells, and even then, sometimes the transplant doesn't work.  Stem cell harvesting has only been performed on a baby Timothy's size once or twice in the US.  Of course, the harshness of this last chemotherapy, the lack of experience in harvesting stem cells from small babies, the likelihood of infection, and the possibility that the harsh chemo's side effects may kill Timothy give us serious reservations in selecting this approach.

The second method requires us to travel with Timothy periodically in New York over 18 months to receive treatment that uses a different form of immunotherapy and 7 doses of vaccine to help the body develop the ability to attack the tumor cells.  This specialized treatment is only available at Sloan-Kettering in Manhattan. We have decided to  take the him to Sloan-Kettering after his fifth round of chemotherapy, as it will be gentler on Timothy and its success rate is comparable to the prevailing method in DC.

Doctors also recommended genetic testing of the cancer cells to see if there were some sort of non-toxic, targeted collateral attack we might use against the cancer.  

While insurance has helped with covering some of the costs of fighting this awful disease, it is not covering as much as we'd like.  Further, insurance will not cover genetic testing that could target Timothy’s chemo and speed recovery.  And while some Sloan-Kettering costs will be covered, much of the treatment and the costs of living with Timothy in New York for 3 months out of 18 will not.

Since the day Timmy was born, we have lived from minute to minute, waiting and watching, making decisions about his care, and praying that he will live.  And we've thought more broadly about our other three children, working to give them consistent focus and love to help them as they suffer through this as well.  

Foremost, we ask for your prayers for Timmy and us.  We accept God's plan for us all through this and are grateful for the focus on faith and love this trial brings.  Our church community, family, and other friends have been extremely supportive.  

In fact, it is only through the suggestion and encouragement of our friends that we make this plea.  We estimate that we will incur out-of-pocket expenses of at least $65,000 over the next 12 months as we fight for Timothy’s life.  We hate asking anyone to help us with this, but do so in hope we can stay afloat for Timothy and the other children as well.  Should we have donations exceeding expenses, we will contribute the remainder to cancer charities.

We thank you so much for considering supporting Timothy and his family, and wish you God's blessings.

-Patrick and Mary Anne

**As federal employees, we have consulted with our ethics advisors at Navy and DOC.  We ask that, if you are considering supporting Timmy financially,  no corporate donations, but rather only personal donations, are provided to ensure we keep within federal ethics guidelines.  Thank you for considering!
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Great news! Although Timothy still has multiple tumors in his liver, yesterday's CT scan shows that every tumor is smaller than than 1 cubic centemeter! And his adrenal tumor has decreased from 6.6 cubic centimeters back in August to 0.4 cubic centimeters as of yesterday!

Also, the we heard back on Timothy's liquid biopsy. This is definitely one instance in which no news is good news: they found no neuroblastoma cells in the blood sample they took. Currently we don't know if there's any way to wage a collateral attack on the tumor. But the neuroblastoma cells are not circulating throughout his body! If his cancer is confined to its current locations, that's a really good thing.

The chemotherapy is killing his cancer, and it shows: Timothy is cooing, grabbing things a baby would find interesting (like my hair!), smiling and working his baby muscles. He loves cuddling and all the ladies. He likes guys too, but he certainly prefers ladies.

Although it looks like the chemo has claimed all his hair from the picture below, he still has a good amount of red fuzz on the back of his head behind his ears. We have an appointment with the oncologist tomorrow to discuss whether this progress means we can or should move forward with a course of treatment that's less severe than the standard 5 rounds of high risk chemotherapy (he's had 2 rounds high risk and one round of intermediate risk chemo).

We are so grateful for this progress!
Nov 12 2018
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After an infection & chemo, he's home!
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ready for Halloween!
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We've had quite the couple of weeks with Timothy! 2 weeks ago I took him to the emergency room because his temperature was low. The ER doc gave him an antibiotic and took a blood sample, and sent us home. The next morning we had a clinic appointment and the oncologist had just gotten the blood culture results from the ER: he had a bacterial infection in his blood, and the antibiotic that they happened to minister is not particularly effective against that strain of bacteria. So Timothy was admitted to the hospital the same day.

After a couple days of antibiotics in patient, he started his third round of chemotherapy. on his 5th and last day of chemotherapy, just after his final dose was administered, his central line snapped. The nurses clamped the line and we put them on the schedule for surgery the next day to remove the broken line. Because he had just finished chemotherapy and we wanted to minimize the possibility of infection, we are waiting to insert the new central line until just before his next course of chemotherapy.

But there's more good news than there is bad news or drama! Right after admission, they did an ultrasound of Timothy's belly and it appears that the tumors are responding dramatically to the chemotherapy! a tumor on his adrenal gland is 18% of its original size, and his liver has 3 visible tumors, each of them a cubic centimeter or less in size. there's a lot of scar tissue in the liver from tumors which have died. The hospital's attending doctor last week called Timothy his response to treatment "miraculous".

Patrick went to Sloan-Kettering on Friday to discuss Timothy's case with Dr. Kushner, MSK's expert on neuroblastoma. His passion for kids and desire to heal them while avoiding over-treating with chemo has reinforced to us that taking Timothy to MSK is the right choice. Depending on his response to the third round of chemotherapy, we may possibly reduce the total number of chemotherapy cycles Timothy will have.

We have been buoyed with hope from both the great team at Fairfax Inova and msk, as well as from all the love, prayers, and support of our friends. Cancer's a fight, and we feel a lot better about our odds.

Thank you.
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$15,885 of $65,000 goal

Raised by 171 people in 1 month
Created October 12, 2018
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