As most of you have read, Cole was officially diagnosed with Unilateral Retinoblastoma on Monday, Sept. 12, 2011. 10 months and one day after Jamison's diagnosis of Bilateral Retinoblastoma on November 11, 2010. They found one small tumor in Cole's left eye. To say we are shocked is an understatement.
A little background. When we did genetic testing we did find out Cole was a carrier. However he had two clear dilated eye exams, locally at that time. He also had a clear MRI on his brain. All of their doctors were reassuring that he would likely not have any problems with RB even though he carried the mutation. He was 3, Jamison had it first, he showed no signs, his appointments had been clear. Monday we were at Dr. Sheilds' office for the new patient day. Jeff was playing with Jamison while I was with Cole when they did the brutal appointment. The entire time he was fighting and screaming, "Mommy, please make them stop, she's poking my eye, please, please, please." She did his right eye first, all clear, no signs of RB, so I start thinking how awful I am for putting him through this for nothing. Then she starts with the left eye. After a few minutes I hear, "there's a lesion." He has one small tumor in his left eye. That day she assures us she can get it with cryotherapy, freezing, and not have to do chemo.
On Wednesday we brought both boys in for their EUA's. As she's looking at Cole's chart and for whatever reason the genetics clicked in her head and she tells us she wants to consult with Dr. Leahey about possibly doing chemo.
Needless to say, Wednesday was day 1 all over again. The big differences, we were totally blindsided. We knew somewhat what we were going into with Jamison. We fully expected chemo, we knew he had cancer. We didn't know 100% what to expect, but we knew it wasn't going to be good. With Cole we had been reassured he would be fine, then we were told no chemo, and well, we were finally hit with, he has cancer and we're doing chemo.
The chemo is to ensure that he won't lose his eye, at least not due to this tumor. But it also to greatly reduce his risk of pinealblastoma or trilateral retinoblastoma, where the cancer shows up in the pineal gland in the brain. There would have been a 9.3% chance of this happening, so 1:10 kids would get this if not treated with chemo. That was too much of a risk. If that were to happen it would most likely be fatal. It's also hopeful that it can help fight off any new tumors that may want to show up in his eyes.
Cole did his first round of chemo on Wednesday, 9/14 and Thursday, 9/15. There are also some differences with his chemo. He will be getting the less aggressive course of treatment. The more aggressive is done in children with a D or E tumor, the less with those who have A, B or C. Cole's is a B. He will still get vinchristine, carboplatin and etoposide, but he only gets etoposide both days, where as Jamison got Carbo and Etoposide both days. We are also going to try this without a port. He fights the IV placement but calms down almost immediately depending on where they place the IV. The second day they placed it in his had so he had no ability to use that hand due to his "no no". That is something that put over it in hopes that the children won't pull their IV's out. He was not a fan of that, but eventually got used to it. He also will not be getting the neulasta shot because of the lesser chemo being used. His numbers should not drop as much. He is looking at 5 more rounds of chemo, once a month in Philly. So, yes, we're back to traveling monthly to Philly. We're pretty much back where we were 10 months ago.
Jeff and I are still in complete shock.
Jamison did receive a stable report, meaning no new growths, he is still in remission. His birthday is Saturday and we have decided to continue with having his birthday party.
I have to touch base with our social worker, make his first clinic appointment for labs, call and set up hearing tests for both boys, Jamison, just a recheck because the chemo can affect his hearing. Cole to make sure his hearing is good, with Jeff's family history, we want to make sure that all of their other senses are working great since their eyes are compromised.
Cole will be fine, but the next 6 months are going to be difficult. He will know what is going on. A 3 year old's cries are so much different than a 1 year old's cries. I am trying to help him understand that his eye is sick and we are giving him medicine to make that feel better. However this medicine might make his tummy sick and will likely make his hair fall out. Within the next couple weeks we're going to buzz his head, in hopes that the hair loss won't be a complete shock to him. I know Cole and Jamison like to share everything, but I would have appreciated them not sharing this.
Thank you again for all of your support, prayers, good thoughts.
This is all so heartbreaking to hear. I pray for the strength of you, your husband, and your boys in the coming months. What a celebration you will have when both are in remission. Praying for that day soon. Please let us know if you need anything.
ReplyDeleteThank you, Leah. We are devastated, but we know he will get through this. It will be difficult, it already has been more difficult than Jamison because he is aware of what is going on. We can't wait until February when he will be done with chemo.
ReplyDeleteOh Jayme, this is so unfair. I am so so sorry for all of you having to go through this again. I think, for the first time, I can say, "I have no idea how you feel." But I will say that I was very very nervous to start chemo with Austin the second time because he was older (10 mos at first diagnosis, 3 yrs 3 mos at relapse) and I thought it would be so much worse (he's so strong, he'll be fighting against me; he'll try to run away, etc etc). But it wasn't (and he didn't). In fact, I think it was better. For a few reasons: 1)Those first 8 months we never put him down when we were in the hospital. He was always in our arms. We even shared a bed b/c he refused to sleep in those awful hospital cribs. This made it difficult to do anything -- even go pee! -- without someone else to help. The second time, I could leave him, at least briefly, on his own. 2) I was nursing the first time, which I think was wonderful for Austin's health, but was so difficult for both of us when he was NPO (which he once was for 8 days and then 10 days in a row -- not pleasant). And 3) he was able to express what was wrong the second time around: what hurt, what he needed/wanted, what felt good/what didn't. This was so much easier than trying to guess the meaning of a non-verbal baby's cries. Plus he was able to let his spunky personality shine through and he actually managed to squeeze some fun out of his days and weeks in the hospital. I hope you find the same to be true for Cole.
ReplyDeleteAlways wishing for you....
Krissy