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Timmy's Team To Beat Cancer

$26,755 of $65,000 goal

Raised by 222 people in 5 months
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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it's been awhile since I've updated you all on Timothy! I went for our first consult at Sloan-Kettering January 17th. At that time, the national expert examined Timothy in person and examined the CT, MRI, and MiBG scans that we took in early January. he told us that at this time, Timothy presents No Evidence of Disease, or NED. This doesn't mean we have beaten the cancer, however it does mean that we currently have the upper hand. It is possible that individual or groups of tumor cells too small to detect on scans still exist in Timothy's body, which is why we are undergoing immunotherapy.

Immunotherapy is a fascinating cancer treatment in which an antibody attaches to certain receptors on the tumor cells which then signals to the body is white blood cells that the tumor is an invader and must be killed. Unlike chemotherapy, it has no long-term negative side effects. however, during administration it is immensely painful. Those receptors which are present on the tumor cells are also present on nerve cells, and the antibody causes a terrible burning pain throughout the body. Kids describe it by saying it's as if lava is running throughout the whole body.

Luckily, Timothy is so young that the nerve endings in his extremities are not well developed yet. Younger children like Timothy feel the pain mostly in the abdomen and hips. He had his first session of immunotherapy yesterday and it was, as expected, immensely painful. Doctors could not use a full dose of pain medication because they did not know how Timothy would react to the pain meds. it was awful for the first half hour, and the pain diminished afterwards. As I write this update, it is 18 hours after Monday's immunotherapy ended. He is fussy and irritable, but doesn't require any more pain medication.

We have two more sessions of immunotherapy this week: Wednesday and Friday. Each of these should be less difficult than Monday because they can give him more pain medication. The expertise at Sloan-Kettering gives me a lot of hope that Timothy
can make it through. That, and the prayers of our friends and strangers touched by his story.

Thank you all, so very much.
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Merry Christmas and Happy New Year to everyone! Timothy was discharged from the hospital yesterday after completing his 5th round of high-risk chemotherapy. This completes the chemotherapy piece of his fight against neuroblastoma! to symbolize this completion, Timothy got to ring the bell on the oncology floor of the hospital.

We have an oncology appointment tomorrow morning, during which we will probably schedule some scans to see whether there's any discernible tumor left. Regardless of what we find, the next step is an in-person consult at Sloan-Kettering, immediately followed by bone marrow aspirations and radiation of the tumor site.

The doctors are not sure whether Timothy is large enough for immunotherapy at this point. if not, he may need to undergo some maintenance chemotherapy to keep the disease at bay while he grows large enough for immunotherapy. If he's big enough for me to therapy, we will be back at Sloan-Kettering in about 10 days to begin our first of 5 monthly 9-day immunotherapy visits.

We are so thankful that we have gotten to this point! What a great way to end 2018.

love,
Mary Anne
ringing the bell
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We have some great news to share! Timothy had another CT scan on Thursday, and on Friday we learned that one round of intermediate risk chemo and 3 rounds of high-risk chemo have cleared even more of the cancer from Timothy's body. His adrenal tumor is even smaller than it was after the last round of chemotherapy, and the radiology report says that the tumors in his liver have"largely been resolved".

We are amazed and thankful, but we also realize that this is an aggressive disease with a 40% long-term survival rate and the battle is not over yet. Timothy goes back in for another round of high-risk chemotherapy. After he heals from this round of chemotherapy, we plan to go to Sloan Kettering in Manhattan for an in-person consultation, a couple tests, and possibly radiation of his liver in mid-to-late January. Hopefully, the next step is immunotherapy 10 or so days after his initial consultation. It is possible that the doctors might not think that Timothy is big enough to withstand immunotherapy. Not only is this a rare cancer, but it is super rare to have a high risk presentation in an infant as young as Timothy, and so they haven't really seen many cases of immunotherapy in a small baby. If he needs to get bigger, the doctors will likely recommend further courses of chemotherapy to keep the disease at bay while Timothy grows large enough to withstand immunotherapy.

Patrick and I are so grateful to God, to our medical team, to our friends, and to the friends and strangers who have given us the financial support to ease the burden on our family. You all have made an incredibly difficult journey easier and far less lonely. As we leave the Hanukkah season and roll deeper into Advent, I think about the miracles of light dispelling darkness and reflect on God's providence in bringing us friends and strangers who have helped to keep the brightness of a new soul burning in this world. Thank you all.

Merry Christmas, happy belated Hanukkah, and Happy Holidays all around.
he's always sleeping when I write...
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We just celebrated Thanksgiving, and our family has so much to be thankful for. we spent Thanksgiving Day in the hospital with Timothy, watching the Peanuts Thanksgiving special and had turkey, potatoes, and cranberry sauce, thanks to one of the Charities that works to bring comfort and normalcy to the families with a child in the hospital. These groups are real god-sends over the holidays when we barely have enough time to take care of our normal obligations, let alone additional holiday preparations.

Timothy finished his fourth course of chemotherapy late Monday night. Cisplatin, which was part of this most recent round, is one of the rougher drugs. As of Sunday morning, Timothy is still nauseous, in generalized pain, and in a lousy mood. after some Tylenol to deal with the pain, he does better with everything. The trick is keeping the Tylenol down!

Chemotherapy always feels worst right after it's completed, and he has a couple more days of feeling crummy before he starts to improve. But he looks so much better overall than he had on the very beginning of our journey! What the doctors are recommending is working well, based on the progress we have seen so far. We're still cautiously optimistic.

I hope you all had a lovely Thanksgiving. We are especially thankful for Timothy's progress, our friends and family, and for the strangers moved to help us. Thank you all.
visualizing the fight on Timmy's window
his first days
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Raised by 222 people in 5 months
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