Patrick passed away peacefully today immediately after a ray of sunshine broke through the clouds and lit up his room. He was surrounded by family and friends. Erin read Madison’s birthday letter to him and then he finally won his battle. In addition to the legacy of love we spoke of last night, he will give two strangers the ability to see. How wonderful that his eyes will continue to behold God’s creation.
In just a little while Patrick will celebrate his ninth birthday surrounded by family and adult friends, nurses and doctors in the comforting surroundings of CHOA where this journey began. There will be no cake or plastic toys or electronic gadgets or even Legos.
As I write this, Stephen and Patrick are in Orlando with our dear friends, Scott and Cannon. They are staying at the Nickelodeon Hotel, and the boys were thrilled about getting slimed. They are visiting Legoland today, and to say that Patrick is excited is a vast understatement! Tomorrow, they will fish the St. John’s River and then cheer the Dawgs onto an SEC Championship victory (a tall order, but you gotta believe!). Patrick has been begging to go fishing since missing his annual fall fishing trip in October. I am so happy he feels well enough to enjoy this opportunity!!
We received some extremely good quality of life news on Thursday – our next round of hu14.18 will be here in Atlanta! We are thrilled…. as you can imagine the separation of Patrick and me from Stephen and the girls is difficult and lonely. We are thrilled that our separation will be a matter of a mile rather than almost 800 miles!
Quick update: Despite the intense buildup to infusion time, today was relatively uneventful. The only pain was caused by the IV. There was a little nausea, but that can be any day for Patrick. There was a lot of boredom. The next two days loom LONG for us, but we are taking care of business!
The hu14.18 trial we have been waiting for so intently will open officially on Monday! On Sunday, October 2, we are taking the kids to Harry Potter World at Universal Studios in Orlando for a few days. Patrick and I will fly from Orlando to Philadelphia on October 5 for a full disease evaluation at CHOP on October 6 and 7. We hope to spend a long weekend in the mountains after that.
I just hung up with Dr. Maris and Erin. Dr. Maris confirmed what we have seen for the last week – that Patrick looks good, feels good, and there is no reason to believe that MIBG is not working. He is therefore moving ahead with stem cell infusion this afternoon. …read more
Patrick and I flew to Philly on Wednesday, met with Dr. Maris, and proceeded with MIBG treatment #4. No child has ever had more than 5. Patrick’s skeleton and bone marrow host billions of neuroblastoma cells that are now being carpet bombed by trojan horse radiation. We know this has worked very well for him before to knock down disease with the hope that we could transition to antibody therapy or other trials that have simply not panned out. …read more
I have started this update several times, but the words keep failing me. I want to find an eloquent way to tell you and myself that everything is wonderful and that Patrick’s cancer is cured. Unfortunately, the truth is that the scans yesterday were not good no matter how positively you try to look at them. This was not a surprise, but it was still painful. Patrick has extensive disease in his shoulders, arms, spine, and legs. Amazingly and in keeping with his character, he has not complained one time of pain, which is unbelievable when you look at those scans.
Patrick’s eye is looking much better, but his haircut looks pretty rough. As if on cue, after I posted last about no hair loss occurring yet, Patrick’s hair begain to fall out. He opted for a home grown mohawk, which is certainly savage. He is transfusion dependent for platelets, but his ANC is climbing slowly. He is scheduled for a CT tomorrow, probably platelets, maybe blood, and a MIBG injection.
You haven’t heard from me in a while. I have abdicated update responsibility to Erin while I struggled to find inspiration and recovered from a series of body blows. As a multi-generational Augusta native, pride in the Masters is a given. One wonderful thing about the U.S. Open, though, is that the drama unfolds on Father’s Day. This Father’s Day is when Rory McIlroy shook off a dreadful Masters collapse and won with as much class as he lost with in Augusta.
Patrick has enjoyed his best summer in recent memory. His last 5 summers have been dominated by intense treatment, hospitalization, and travel. This summer, due to many factors that I am going to refrain from venting about here, his treatment has been minimal. This has allowed him to spend a ton of time playing with friends, fishing, tubing, going to the beach with his best friend, and relaxing in the mountains. … read more
We were blessed with a wonderful surprise this morning when Patrick’s MIBG scan was clear!!!! Although this doesn’t mean he is in remission due to the very probable marrow disease, we are thrilled that his low disease burden means treatments may be more effective.
What an emotional day for me, and I presume Patrick is feeling it, too. Today is our last day of school, which is a bittersweet day for all families. Another year gone by, another sign of how fast childhood passes. Today is more than that for me. As some of you know, we have decided to home school Patrick next year for a variety of reasons.
posted on CarePages, April 16, 2011 Stephen and Patrick are on a flight home as I type this update, a little later than the scheduled arrival time. Patrick’s radiation level was 6.5 this morning, barely below the release limit of 7. We were concerned that he would be inpatient a little longer this time because […]
posted on CarePages April 14, 2011 As I write, the second dose of MIBG is infusing into Patrick’s body. Radiolabeled iodine is circulating through his vessels and being soaked up by neuroblastoma cells that will soon die. Many will not, but today at least we have our heels on the throat of the beast. I […]
Patrick had his MIBG scan six weeks post MIBG treatment this morning and the results are very good. There is still evidence of some disease, but Dr. Katzenstein described the disease burden as much improved. We have not yet heard from the team at CHOP about their impressions and recommendations going forward, but we feel fairly certain that we will repeat MIBG treatment as soon as Patrick’s counts allow.
Yes, kissing the sidewalk is what Patrick was doing when he jumped out of the car beside our house this evening. OUR HOUSE!!! He literally laid down on the ground and smooched the cement like it was his favorite Valentine.