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Monday, June 15, 2009

Liam Returns to Battle

It is with heavy hearts that we share with you the unfortunate results of Liam’s most recent scans. The results of which showed that Liam has relapsed in a new area behind his lungs, around the lymphatic system. The 3f8 treatment Liam has been so fortunate to receive does not seem to be the right therapy to keep him free of soft tissue disease. We have been fortunate not to have found disease in his bone marrow but it is a mixed blessing since bone disease is what 3f8 really excels at fighting and the treatment Liam has tolerated well. He received 7 rounds of 3f8, two being high dose, since earlier this year. Cells hiding in soft tissue require that chemo be used to kill them so Liam will start a round of high does as early as tomorrow if not later today. No amount of time can be wasted since the tumors they found were not there 90 days ago and have grown to be approximately 2” in size in a short period of time.

It angered me all weekend to know that the cells were growing and spreading while he ran around the yard, swam, rode his bike, and played with Ella as if his world was in perfect order. The feeling of being completely powerless while something is harming your child right in front of you is a feeling I cannot begin to describe.
Today Liam has an MRI to better understand where the tumors are located since one resides in the soft tissues surrounding the spinal cord. It is most likely in the tissues around the vertebras according to last week’s scans but we need to be certain.

Liam will also have a port surgically implanted back in his chest today so he can receive chemo. The surgery time is not known since he was an add on the schedule so will be squeezed in at some point. He will be really bothered by the ports return both physically and physiologically. It kills us to have to watch him endure so much. We plan to tell him that his blood “still needs more fixing” and he will need more medicine to get the job done. Liam does not know he has cancer, does not know what cancer is, and thinks he is perfectly normal. His innocence has been a major priority of ours throughout the last two and a half years. We know that this time around he will likely question the various treatments and procedures more than ever as he works to process and determine what is really going on. Anyone who knows Liam and knows him well appreciates his relentless curiosity and inquisitive nature.

We are looking in every direction to determine the next best step based on Liam’s situation. We know we must stop and shrink the tumors immediately and then remove whatever is left. Meaning, Liam will likely undergo a major surgery sometime in July. We along with Liam’s team of doctors at MSKCC, along with input from several other top neuroblastoma doctors, will then develop a new game plan to keep him clean. There are a few other options but not as many as you would think or desire. Each will likely include various combinations of chemo as well as new or experimental therapies like NK cell, ABT-751, or MIBG therapy.

We have a most unpleasant and unexpected summer ahead of us. Your support and endless cheering for Liam is what truly keeps us going. Though we are scared, broken, and tired of this journey’s seemingly endless barrage of heartache and pain, it is one we would walk a thousand times over for Liam.

I will leave you with this:
On Friday we returned to our apartment after learning of Liam’s relapse. Gretchen and I were doing our best to act as if nothing was wrong even though we were both crushed and had pretty much had the life sucked out of us. We could not appear as if anything was out of the ordinary even though we were both numb. I walked into Liam’s room with him to find the sun streaming through his bedroom window. He said “Daddy! Daddy look! It’s beautiful! Look at the sunlight” as he held up his arms and basked in it, dancing around! I could not physically respond but I doubt I will ever forget to appreciate the simplicity and beauty of late afternoon sunlight shining through a window. ..yet another lesson from our young Prince.
June 14, 2009

Dear Friends of Prince Liam:

Gretchen and Larry asked me to write you all because they are polishing their armor at the moment, getting ready for battle. On late Friday they were given the news that Liam has had a relapse and will begin a course of chemotherapy treatment beginning Monday. He will also need a fairly complicated and delicate surgery in the upcoming weeks. It has come as a complete, devastating and disappointing surprise especially considering how great Liam looks and feels as everyone who attended his birthday party last weekend can attest.

She and Larry have much to do. Most importantly they must stay strong and rested and focused for Liam. So here are the things that you can do during this part of the journey. Remember that no acts of kindness are wrong-- it's just that some things are more appropriate and more helpful at times like these than others.

If the tone of this seems a little harsh, it isn't meant to be. It is just meant to give Gretchen, Larry, Ella and Liam the greatest amount of practical and helpful support at a stressful, tense and crazy time.

So here goes:

1) NO crying visitors. Only stiff upper lips. They'd love visitors, but only if you come with the intent of showering Liam with joy, either by bringing a craft project to do or a book to read.

2) No chair sitters. They need you if you are ready to run and explore and engage Liam in order to give them a break for a few minutes. For Ella’s friends’ mommies and daddies, Ella cannot be forgotten in this crazy time. She loves playdates but there are times they'll need to cautious of her exposure to others because of the risk it poses to Liam. Please have no one with a cough, cold, sniffle or anyone less than 100% healthy around Ella.

3) Don't ask questions about Liam when he or Ella are around. In fact, please don't ask a lot of questions in general right now about the details or the disease or outcomes. They don't have the answers and answering them is exhausting.

4) No one is allowed in the hospital room who doesn't believe that there is any other outcome than to battle this cancer beast back once again.

5) If you're not a local friend, you can hold a bake sale, buy some cookies (www.cookiesforkidscancer.org), do something to support their efforts to make more treatment options available for this insidious disease.

6) If you're not local and even if you are.... send a handmade card or music card to Liam and one to Ella - they love them.

7) Don't call. It is one more thing that will make them feel like failures as there will not be enough time in the day to take care of Liam and Ella, to calm them, to talk to doctors and nurses, to wage the battle and to rest-- even though that last part is next to impossible.

8) Do send an e-mail instead. Don't expect a reply but know they appreciate your note.

9) Don't ask Liam how he feels or Ella how her brother feels. Liam looks and feels great. When people ask him how he feels, it confuses him because he doesn't understand why people are acting like there's something wrong with him.

10) Pray if you pray, believe, hope, send love and good thoughts and only wonderful intentions during this time. We will take all of the powers of the universe right now. And know that we love you for your friendship and support....

Lee Woodruff who shares a birthday with Liam