Press On

Just over three years ago I think I said the same thing: “One down.” Little did I know how difficult and, in many ways, magical the road would be. Today, the last day of this first course of the investigational Aurora A Kinase inhibitor, Patrick awoke unable to walk without significant pain. He is apparently suffering from hand and foot syndrome, which is a known side effect of chemotherapy and kinase inhibitors in particular. Fortunately, his pain is controlled with Tylenol III. We learned through research today that emollients and maybe vitamin B6 can help. We will discuss this issue with Dr. Maris and do all we can to maintain his current dose. To put this small matter in perspective, we are together at home (not a subset in NYC), not nauseated (like recent chemo), not on dilaudid (like 3F8 induced neuropathy), without port access, and otherwise doing well. The very good news is that Patrick’s CBC was unchanged from Monday. His hemoglobin, platelets, and absolute neutrophil count were great – as in normal for you and me. We only hope the drug was much more punitive of NB cells. We look forward to the MIBG scan! SRC

A quick update to ask all you faithful prayer warriors to bend the Lord’s ear for our friends, the Morgans. I have written about this dear family before. Ryan was diagnosed with stage IV neuroblastoma a year or so before Patrick, and his mother, Missy, was kind enough to reach out to us when our battle started. Ryan relapsed 2 years ago, and his family was told this week that CHOA has run out of treatment options for him. Please pray that there is another option for him in Vermont, Memphis, Texas… anywhere! Missy is battling metastatic breast cancer while trying to care for Ryan and their other 2 children (she has an amazing husband as well). There is still a fight left, and I know that they will appreciate your prayers for strength, answers, and a cure!

On the Patrick front, his catecholamines were tested last week, and we learned last night that they are within the normal range. Catecholamines are the “fight-or-flight” hormones produced by the adrenal glands that can indicate neuroblastoma activity (among other things). It is a VERY good thing for Patrick’s to be normal, and we pray for those normal results to continue for a long time. It looks like we will have MIBG and MRI scans in June, so you will be receiving “scanxiety” updates in the near future.

Sorry for the brevity of this update… I will leave a description of Patrick’s recent fishing trip for Stephen to post on another day. Please say a prayer for the Morgans, Ward Wright (a new member of our neuroblastoma family), Brennan, Cookie, Tara, Chloe, Wil, and all our buddies fighting cancer.

With hope (and a heavy heart),

In the last fiscal year, Press On donated more than $78,000 to Dr. Donald Durden’s research of PL-3 Kinase Inhibitor and Targeted Therapies for neuroblastoma. Click Here to read a report from Dr. Durden outlining his progress.

Press on also directed $10,000 to Memorial Sloan Kettering Cancer Center (MSKCC) to support a team of dedicated neuroblastomaresearchers who are investigating exciting treatment options that they believe could help save more children with neuroblastoma. MSKCC is working on several pioneering treatments including a humanized version of the 3F8 antibody, a mouse-based 3F8 antibody that attaches to neuroblastoma cells and kills them. The antibody, developed by MSKCC’s Dr. Cheung, also trains a child’s immune system to attack and kill neuroblastoma. Since first used in 1987, 3F8 treatment has greatly improved survival without lasting side effects. The mouse-based antibody’s primary drawback is that it can be rejected by the child’s own immune system. MSKCC is researching chimeric and humanized v ersions of 3F8 to alleviate this issue and make it more effective for a greater number of patients. MSKCC is also workng on several other promising treatments for neuroblastoma, including different antibodies and a vaccine.

It is incredibly hard for me to post the news we learned today… Patrick has relapsed with one tumor above his right ear and possibly a second tumor in his chest. Dr. Katzenstein thinks that the tumor is in the bone of his skull (as opposed to the tissue of the brain), but we will not know that for sure without further testing. We are deeply saddened, but gearing up for another full attack on the beast neuroblastoma. We have not told the children and don’t plan to do so until we cannot keep it from them any longer. Patrick will have another MIBG scan tomorrow, and we will meet with Dr. Katzenstein afterwards. We are trying to schedule CT and MRI scans and likely bone marrows and a lumbar puncture so that we can determine exactly the extent of his disease. I will keep everyone posted as we receive the news.

I am too shaken now to wax poetic, but I am sure that type of e-mail will follow as we adjust to our new “new normal.” We are strong and ready to fight. We appreciate your prayers.

Love,
Erin

Erin and I took Patrick for the 48 hour MIBG and CT this morning. We just got home. When I saw the spot light up on his head I could not imagine how Erin felt when she saw it yesterday without preparation. The equivocal spot in the chest remains equivocal. If it is there it is very small. The CT of the head clearly showed a bony lesion – not an intracranial lesion. It is easily targeted with radiation. Bone marrow biopsies are scheduled for Tuesday; port implantation for late next week. Assuming the bone marrow is clear (please specifically pray for that), then the plan will include simultaneous chemotherapy (irinotecan and temodar) and radiation for essentially two weeks beginning a week from Monday. This treatment will be outpatient, but the days will be long and tough. He will then be off for two or three weeks, then another round of the same chemo, then we will re-scan. The goal is to achieve second remission as soon as possible. Meanwhile we will plan a maintenance regimen. Those options are many, but the choice is complicated. We are entering the world of experimental therapy in a big way. Doctors at CHOA, Sloan Kettering, CHOP, MD Anderson, Vermont, and UC San Diego are already on Patrick’s team. We will not be out-smarted or out-worked. We will continue to smile and live a fun life.

Hold on to this, because we are: Erin spoke to Dr. Kushner (Patrick’s doctor at Sloan Kettering) last night. He confidently stated that his clinic is full of survivors who defeated isolated bony relapse.

We are sad, angry, shocked, and worried. But we are also prepared, strong, inspired by how good Patrick feels, and absolutely ready to reclaim the quality of life we have enjoyed with you the last two years.

The toughest part will be breaking the news to Patrick and Madison. We will do that late next week before the port surgery. Please be careful what you say in their presence. There is no reason for them to have any extra moments of the feelings we all feel now.

As always, thanks for your support. We really need it. SRC

I am not sure there is a truer statement than “everything is relative.” Patrick may not consider the pain he went through today to have been “easy,” but compared to the last two days, today’s treatment was just that. Really, there was just no other option.
After I updated yesterday afternoon, Patrick’s blood pressure spiked and we ended up waiting around for it to decrease until after 4. Alev met us at the hospital and walked us back to the Ronald. Patrick slept like a teenager until close to 7 and then woke up ready to go. I knew it was a good sign when we were not only blessed with Alev but also with the news that our favorite noodle house reopened with the same menu and a new name! So, we promptly ordered take-out of his favorite dishes. In a few short hours, he managed to pack in making his own version of an Atlanta Braves hat, racing with his buddy Rich, and playing with Alev. It was the first time I had seen the normal Patrick since we arrived. He woke me up this morning with a request to find a coin store here in New York. We had brunch at EJ’s and then slid north several blocks to a little coin store on Lexington. Patrick picked out an ancient Roman coin from the 300s. I was happy to buy that instead of something plastic from Toys R Us. He also picked up a copy of the “Numismatic News” to read. Between that and his crazy hat, he got a lot of looks from the natives on the streets.
We got to the hospital in time for him to make some pizza, do some puzzles, and beat me at Go Fish. When we got to the room, we were pleasantly surprised with a visit from Jocelyn. His pain today was relatively mild. Enough for a few doses of dilaudid and a healthy case of hives, but not over the top. I was so relieved. This has been a really hard week for all the kids here. I don’t know if it is something in this batch of 3F8, but we collectively agreed that today HAD TO BE BETTER and it was. Nice how that worked out.
Please pray for our little friend, Jack Huffman, as he prepares for surgery tomorrow. I have been in contact with his family for about a year now. Jack recently relapsed with a large tumor that is wrapped around his heart and the nerves surrounding it. The very talented Dr. LaQuaglia here is operating on it tomorrow, and the surgery is very risky. Jack is 4 and has an older sister, Elizabeth, who is in third grade. They are from Greenville, SC and did their stem cell transplant at Egleston. They are a very sweet family and Jack is precious. Life is hard on 73rd street, without a doubt, so while you are at it, please pray for all the families who are currently in treatment for cancer of any kind.
Thank you for checking in… I hope to report only good news from here on out.
With hope!
Erin