March 29, 2012

I know, I know...I'm a bad blogger, but no worries...Clayton is doing GREAT!
Starting with this round of chemo, his dosages have been and will be reduced by 50%- that isn't a reduction in time, just strength. Let me answer the inevitable question: what will giving him less chemo do at this point? According to the oncologist, probably nothing because the majority of the tumor's reaction to chemo should have been seen in the first few rounds of chemo. Therefore at this point in his therapy there shouldn't be too much difference between 100% and 50%. Not the easiest concept to grasp when your number one goal is to obliterate your child's tumor, but we don't have much choice.
I assume that reduction is what has kept Clayton from being as nauseas as he was the last time he had this combination of meds. So far he has had very little nausea and this trip has felt like little more than a boring hospital stay- which beats the alternative. The only thing out of the ordinary is that he has some congestion and a cough BUT no fever! No fever is the key. That and the fact that all the doctors and nurses listening to his chest say he sounds clear.

So for now the plan is to go home tomorrow. Then the next two weeks will hold scans and the the surgery. Oh, the surgery. It has been along time coming. At least it feels that way...

March 26, 2012

Did we get to start chemo? Tricky question. Yes, but almost no. We have had quite the delay in chemo over the past few weeks and were very anxious about today.
So we got here (to the Hope) did our labs and got our results, all by noon. Then we waited to see the doctor. Saw the doctor. Got our room and moved upstairs all by 2 p.m. Then we waited...and waited (completely unassuming)...until finally at a quarter 'til five the room phone rings. It was the doctor from the Hope. He was calling to tell us that there had been a mishap. The story goes that a faulty fax is responsible for the pharmacy not getting Clayton's chemo orders on time. Yes, my son who has already had a chemo delay due to low counts was going to have to have another day's delay while having wasted a day away in the hospital because of a faulty fax?
Call me a b!&$@, but I feel like if you have a job to do, you should do it. If that job is as important as making or faxing chemo orders, then verify that the pharmacy got the orders. You don't rely on a machine as fickle as a fax for something like chemo orders-especially chemo orders for kids. USE YOUR HEAD PEOPLE!
It truly is amazing the mistakes that can be made. Simple things.

On to the good...
We got to start chemo around 8:30 tonight after my favorite doctor came back in to oversee Clayton's chemo being made (Dr. Imran rocks!). Clayton did fine with his chemo. This combination is the crash-cart, potential hearing loss and possible kidney damaging chemo. The difference is that because we have had such a delay in chemo due to low counts, all of Clayton's chemo will be reduced by 50%. Maybe that will mean less nausea for him this go around?
He is doing good so far. Once again, we didn't need the crash cart. As for urinating to flush the second med from his system...he is doing OK. But fear not, they have drugs to aid him with this process. It's late, so more in the morning...

March 21,2012

Still no chemo. Still waiting. Once again I find myself saying maybe Monday. His counts are trending up, which is the most important thing, but they are doing so VERY slowly.
He feels great though! Running, climbing, playing, laughing and having a grand ole' time.

March 15, 2012

Well, I would have posted last night, but George and I both fell asleep when we put Clayton to bed so that was that.
Anyhow, the bone marrow aspiration yesterday went fine. Hopefully we will have the results of that by the end of the week. We did find out his counts still aren't high enough for chemo, but his platelets have come up from 67 on Sunday to 72- we need 75 for chemo. The little nan is doing fine though. He was asleep for the procedure and running and playing just an hour or so later. Let you know when we know something.

March 12, 2012

Looking back...
The fundraiser put together by friends Thursday night went great! George and I had a great time visiting with everyone. We feel so fortunate to have such wonderful people in our lives.
The three of us had a good weekend too. Clayton got to visit with his Uncle Mickey who was down from NYC and we got to hang out at home and relax a little. Relax, being a relative term because I, of course, had to have a project and so I decided to makeover the front flowerbeds that had some enormously overgrown hedges. I'm fairly certain the neighbors thought I was nuts when they saw I convinced my husband to pull each and every bush out with his truck. What can I say? It was therapeutic and oddly satisfying. But I digress...
All of this time, George and I had no doubt that Monday we would be starting round 5 of chemo. This past Wednesday Clayton's labs had revealed platelets of 66 and we were convinced that by Monday we would've been in good standing for chemo...wrong! After our favorite nurse (Amanda) came to do labs on Sunday, we found out his platelets had only come up to 67. We were floored!
Next we had a Monday visit to the Hope (in hospital oncology clinic). So after talking with doctors and sorting things out, we arranged to come back on Wednesday to do a bone marrow aspiration to ensure that the only reason Clayton's counts are slow to recover is the chemo. Don't let this scare you, this is a common precaution when there are delays beyond a week.
It was a neat visit to the hope Monday because Starla was there too. Most of you probably know who she is- the little girl near Clayton's age with AML. We always see her sign on her door in the hospital and hear how she's doing, but we don't see her much and we've only seen her parents a few times. We were all in the Hope on Monday though. If you didn't know better, you might have thought that the two toddlers running around were normal healthy kids. It would have been hard to imagine that Clayton in his Sketcher lights ups playing with his airplanes and Starla with her precious turquoise knit hat hanging out at the nurses station were anything, but normal. If you didn't know better, it would have been impossible to believe that cancer was casting a shadow over either of their lives. It was funny, because when we were leaving, Starla's parents made a point to turn around, wave and grace us with their enormous smiles. In that moment, you knew that they knew we were here almost as often as them, and that they had heard about us just as we had heard about them, and that they too knew the misery of having a child with cancer. We still have never spoken, but their eyes and their smiles in that moment said so much. It was their way of saying that this sucks, but it'll be OK and we are right there with you; we feel your pain and understand your triumphs in our worlds plagued by cancer. I'm sure we'll see each other again soon, but until then, that one gesture was immensely comforting.

March 11, 2012

I'll come back tomorrow and catch everyone up on the weekend, but for now wanted to let everyone know that chemo is still delayed. We went to the Hope today at USAC&W and checked in and talked with doctors. Everyone is hoping maybe next Monday we can start chemo.

March 7, 2012

Home SWEET Home!  We are all loving it!  Trying to work and tie up loose ends while we can.  Otherwise, nothing new right now.  Still waiting on his platelets to come up for chemo.  They need to be at 75 and right now they are at 66, so we're getting close.  Clayton is doing great though.  Eating, drinking, walking, crawling, climbing, laughing and having a ball being home.  He is still a little wobbly from spending two weeks in bed at the hospital, but it isn't slowing him up too much!  We're still working on the backwards sleeping habits, but aside from that, no complaints.
George and I are super excited though to get out tomorrow evening and see all of our friends and family at the Cancer Relief Benefit For Clayton Ladd that some wonderful friends surprised us by putting together.  It has been a while since we've gotten to visit with friends.  Yay!

March 5, 2012

Going H-O-M-E!
Yesterday marked a full two weeks in the hospital, but tonight, we are going home!  Clayton is now fever free, done with his antibiotics and his counts have not been high enough to start chemo, so we are going home for a few days to recuperate while his counts continue to recover.
Home sounds a bit like a foreign concept these days, but we can't wait!  CAN'T. WAIT. I tell you!

March 2, 2012

Still here and in the hospital.   We are finishing  his antibiotic, which will be done Monday and waiting on his pesky platelets to come up high enough to start chemo.  Otherwise all of his counts are good.  When we finish his antibiotics on Monday, if his platelets are high enough, we will stay at the hospital and start chemo, but if they aren't high enough, then we will go home while we wait.
We have known that at some point his bone marrow would start getting lazy.  The doctor said it is common to wait a week or two, but if it takes more than that then we will worry.  In the meantime, we are all fine, just exhausted!  Clayton's days and nights have been mixed up for a while which has made for quiet days and sleepless nights filled with the irresistible laughter of a super cute little-man playing in the dark.  It is incredibly frustrating and precious all in one.

Shrinkage!

A few posts back I mentioned that an ultrasound revealed that the tumor had shrunk.  Here is a visual representation of a few dimensions the ultrasound gave us.  I'm a visual person, so this is for those of you like me.

The boxes dated 11-22-11 represent multiple dimensions (from different angles) seen in November and the same goes for the boxes dated 02-21-12.  Obviously the tumor is not a rectangle or even a circle.  It is a shapeless blob, so I figured that this would be the best representation to give everyone an idea of how much it has shrunk.