Latest scan results

ok this is weird. after you read this you’re gonna go, “that’s weird”.

So Bill had a scan on November 3rd and today we met with the doctor to get the results. We were able to see the scan and see the actual scan side by side with those done in April, July and September.

The April scan showed “remission”
The July scan showed “recurrence” in several areas of the left side of his chest.
The September scan, after 2 cycles of chemo showed “no measurable change” but the areas of concern looked “less dense”.
The November scan looked “stable” and unchanged from the September scan.

It looks the same as the one in September.
Better than the one in July.
Worse than the one in April.

So. The last 2 cycles of chemo haven’t brought about any change or progress. But there has also been no growth either. For now there will be no more chemo, and Bill is very happy about this and the scan will be repeated in 3 months. If there is any growth between now and then he will have a video assisted thoracic surgery so they can get a good look at what is really going on in there.

If you are wondering “why not just do the surgery now?”…I am right there with you. But Bill doesn’t want it now and Dr. Stella feels that a period of waiting and watching is reasonable.

That’s it. I know. Weird. It’s hard to know how to think about this.

BUT…

We are all looking forward to holidays without chemo!!!!!

Many thanks for continued prayers. God Bless and Love,

Lara

Security is a SpongeBob toothbrush and a 75 cent night light.

The circumstances of our life are unusual to say the least, and I know that people wonder what life is really like when there is so much to “get through”. Here is a window to let you see inside a little bit. I’m counting on you to please not bring any of the details of this little story up to Jeffrey. I don’t think that he would mind me writing about it, but I’m sure he wouldn’t want to be asked about it.

When I was first diagnosed in 2007 Jeffrey was 7 and turned 8 while I was in the hospital in July of that year. At the time none of us were really sure about how he was processing all that was happening to him and didn’t really know how much he understood about what was going on with Bill and me. Sometimes he seemed a little sad or scared but he didn’t talk about it much and seemed to be handling things fairly well.

I was in the hospital for most of July and at least 10 days in August, and sometime during that time, Bill threw out Jeff’s Spongebob toothbrush. Ohhhh myyyy…Jeff was so upset…heartbroken, truly heartbroken is the only way to describe how he reacted. We thought he would get over it, but he never did. For months we looked everywhere for a replacement, but of course could never find exactly the right one.

For many months afterwards, whenever Jeff was very very sad, like something was hurting his heart, he would say “You know, mom, sometimes I still think about my Spongebob Toothbrush.”

Lightbulb moment. All of Jeff’s sorrow and pain and fear and sadness were expressed through the loss of that toothbrush. Aren’t kids just amazing??

This fall he has started taking a Karate class at our local Wellness Community called “Kids Kicking Cancer” which is like Karate therapy for kids who have, or whose parents have cancer. It is a phenomenal experience for him and he loves it and is the LOUDEST “AYE-YAH” in class. It’s not just Karate, there’s a lot of dialogue, and it has been a great outlet for him.

However…yesterday we overhauled his room…He was working with me for most of the day, but at one point I replaced his 75 cent night light with a new “LED” night light. When he realized this several hours later, it was the Spongebob toothbrush all over again. We told him it was a way cooler, blue light that was more energy efficient but he wasn’t buying it. He was devastated and said, as dramatically as you can imagine, “You threw out a perfectly useful night light that has been in my room since before I was 3.” Heartbroken again. Now there’s probably about a million great ways I could have helped him talk through it in a way that would have brought the emotions full circle. Instead I reminded him that we had just found the bear that had been in his crib since we brought him home from the hospital (the baby store). When he came downstairs a few minutes later clutching the bear and his eyes full of tears, I went out into the garage and dug through the trash until I found the nightlight. Screw energy efficiency. He was still holding onto that bear when he woke up this morning. So there you go.

Bill is doing ok. Last Friday he completed his 12th round of chemo. 12 rounds (not 12 days, 12 rounds which means 36 days of chemo) of the kind of chemo he’s been getting is just remarkable. Most humans could never tolerate this level of chemical assault, but Bill just keeps taking the bad medicine and (mostly) telling the docs to bring it on. And still remains patient and accommodating and except for chemo week, he is stronger and has more energy than I do! But it is getting harder each time and this last round we had one episode of passing out, a very little seizure and a fall down the stairs. He seems to have recovered, has returned to work and tells me he is “fine”. Ok, sure.

What happens next is anybody’s guess. He has a scan scheduled on the 3rd, an appointment to meet with Dr. Stella on the 8th and, much to Bill’s displeasure, another round of chemo scheduled after that. Usually they just do 4 rounds at a time (what we just did) but as long as he’s still standing the plan is to keep on going…at least for one more round. However the results of the scan could change the plan and there are lots of different possible scenarios. The cancer could be gone; it could be unchanged; it could be the same size and location but less dense (which is what it was last time); or it could have grown. And each scan possibility has it’s own series of possible actions that could be taken. But we won’t know until we know and that is enough for us for now. The waiting is always the worst part of this whole process but I think we’ve actually gotten used to it and have learned to not try and anticipate what is going to happen next.

I can tell you that Bill doesn’t want any more chemo. But he will do what he needs to do.

We get through all of this because God gets us through it and because so many people are so kind and generous and caring. Many thanks for all of the prayers, great t-shirts, cards and meals.

Please keep praying for healing and for a little of Jeff’s Karate motto..

“Power-Peace-Purpose”

and may no-one pitch your Spongebob toothbrush or your 75 cent night light;)

Update

Hello Everyone,

Just a quick update on how things are going. Last week Bill had scans and after 2 cycles of chemo, the cancer is showing some improvement. So he is having 2 more cycles of chemo (started yesterday) and then we will watch some more to see how it goes. In between chemo treatments he is feeling good, able to work and enjoy life. Kids are good. Work is good.

We try and pack as much good stuff as we can into our downtime and laugh hard through the chaos.

We continue to be grateful for the many blessings in our lives, especially for the kindness, prayers and support of so many caring friends and family members. Thank you all for that you do. We love you too!

God Bless and Love,

Lara

May your unfailing love rest upon us, O Lord even as we put our hope in you. Psalm 33:22

Hello everyone,

It’s me this time. I thought that it would be a good idea to post an update myself with a few more details than mom was able to provide when she blogged for me.

Our “slow growing cancer” isn’t growing so slowly anymore. Bill has been having scans every 3 months since his last chemo in September, and in April everything looked great. But much has changed since then and his July scan showed some troubling differences. There is significant growth of thymoma throughout the left side of Bill’s chest and lung that is inoperable and can’t be radiated.

We knew that this was likely to happen, that he would need chemo again, which is why he kept his port in place. But we thought we had more time. And we expected any degree of recurrence to be incremental and accompanied by symptoms. We are stunned.

Bill restarts chemo on Wednesday. He goes for 3 days in a row and then gets his Neulasta shot on Monday, then (maybe) back to work on Tuesday. 3 weeks later he’ll have another cycle of the same followed by a scan to monitor progress. If all goes as we hope, there will be a reduction in what is there and then he’ll have 2 more cycles for “maximum benefit”. Then we watch and wait some more.

Everyone asks “how are you doing?” And honestly, we don’t even know how we’re doing. I think we’re all still kind of in shock. We take turns with every negative emotion-angry, helpless, scared, more angry, worn-down, numb, depressed, sad, tired. It’s all there.

We are trying to be hopeful, but it’s harder this time. For this we just have to pray.

We need some pink hair and a Monte Python party, but I’m short on inspiration.

Everyday I’m asked what we need. Right now we need 2 things. Prayers for healing, hope and peace. And laughter. lots of laughter.

We wouldn’t get through any of this without all of the prayers and love and support from all of you so for that I thankyouthankyouthankyou!

God Bless and Love,

Lara

News on Bill’s Latest Scans

To our dear family and friends,

This is Manoo (Nancy) here – updating the blog at Lara’s request. She and Bill are both at work, but wanted to communicate with you as soon as possible.

The news from Bill’s latest scans is not what we had hoped for. The thymoma is back. They are working out the details of the treatment plan which will probably include a biopsy next week followed by chemo starting the first week of August.

So, once again we are asking for your prayers – for Bill, Lara and the kids especially. But also for the doctors who will be determining and providing his treatment.

We continue to keep our hope alive and know that God will bring us through this newest challenge.

Love to all,

Nancy