Sunday, April 29, 2012

Sunday, April 29, 2012

Just a quick update...Collin has been great over the last month. He is feeling well, loves to play, and is getting into everything, just like a typical three-year-old! He finds joy in even the smallest things; it's one of my favorite things about him, and it's a lesson we should all be reminded of. So is his ability to constantly pick himself up and keep going (literally and figuratively!) Every time he stumbles and falls, even if he sheds a few tears because the fall hurt, he gets back up and says, "I ok, I fine!" and keeps going. He's an amazing little guy.

 Collin has been on a stronger antibiotic, Vancomycin, to get rid of the c-diff, which finally seems to be improving. He took the antibiotic four times a day (every six hours) for two weeks, then twice a day for a week. This week he will take it once a day every day, and then he will take it three times a week for four weeks. Then hopefully we will be finished dealing with this c-diff! Tomorrow we head back to Sloan Kettering in NY for Collin's post-treatment MRI on Tuesday. I have to believe this treatment worked to kill any lurking cancer cells, but I'd be lying if I said part of me isn't terrified. He's been off treatment for a month now, and he had only been off treatment for about two months before his relapse was found last October. Once cancer is in your life, you can never let your guard down; you always wonder if/when it will creep back in and turn your world upside down again. The fear is always lurking. Please say a prayer that Tuesday's MRI will be clear!

4/27/12 - Collin with his best bud (or should I say "best spud"?) at Tanger Outlets in Hershey.

Tuesday, April 17, 2012

Tuesday, April 17, 2012

We've been home for a little over two weeks now, and I've managed to keep very busy. I scheduled Collin's therapies to start again in May, because I wanted to give myself and Collin a little break from constantly being on the go. I knew I had to get caught up on things around the house, and that would be easier to do it I wasn't constantly running to various appointments. During the four days every week that Collin and I were home between trips to NY in March, I was so physically, mentally, and emotionally burned out that I wasn't doing much around the house when I was home.

Then the need to get caught up turned suddenly turned into an overwhelming urge to spring clean and purge, and unfortunately it didn't pass. I think I want to feel like I have control over something in my life. The team at Sloan-Kettering requested Collin's follow-up MRI to be done on March 2, but the schedule isn't made far in advance and they won't let us know until almost the last minute when we have to be there, so I feel like I'm just waiting. I'd be lying if I said I wasn't worried; I try to have faith that the 3F8 treatment worked to kill off any remaining cancer cells in Collin's body, but the last time he was completely off treatment, the cancer returned in just under two months. That's one of the hard new realities since cancer entered our lives in 2010 - and recurred in 2011 - no matter how well Collin is doing, fear is always lurking. So, maybe I'm trying to channel my nervous energy into something useful, and trying to get things ready for whatever comes next. The silver lining is that I'm starting to feel like I have a new house. It's getting cleaner and more organized than it's been in quite a while!

Collin is feeling well and is enjoying being home. We're still dealing with diarrhea; he was tested again by our oncologist and was still positive for c-diff, so she put him on a stronger antibiotic for two weeks. His fingers were accidentally closed in the front door on Easter Sunday, but they were x-rayed the next day and thankfully weren't broken. His latest obsessions are Blue's Clues and Barney. He's been "helping" me spring clean. He loved hunting for Easter eggs, and plays with Neya every minute that he can. She doesn't get out of school until 3:45, but every day around 1:30 Collin starts asking if we can pick her up yet. When I tell him it's too early, he pleads with me. Then when we do finally pick her up, he tells her "I so excited see you!!" It's very cute.

Over the last few weeks, there have been too many kiddos who've earned their wings. It's truly heartbreaking. I yearn for the day when no parent has to watch their child suffer because of cancer, see their lives and the lives of their children permanently altered because of cancer, or mourn the loss of their innocent lives because of cancer. I yearn for better treatments. I yearn for a cure. I really hate cancer.

Tuesday, April 3, 2012

Tuesday, April 3, 2012

We returned home from Collin's third treatment on Thursday, March 15, and by that evening I felt like I'd been run over by a truck. Three days earlier, on Monday of that week, Neya had a low-grade fever and a sore throat, so I had kept her home from school and took her to the doctor for a strep test to be on the safe side. The quick test was negative, and by Wednesday the culture was still negative. However, Thursday evening our pediatrician called to say the culture became positive, and right then I knew I had strep throat. Friday, we took Collin to our pediatrician for a strep test, and he swabbed Collin's throat and mine. Collin was negative, but I was positive, so he wrote me a prescription for an antibiotic. Since Collin was still on antibiotics for the c-diff, it seems he was protected against the strep. I spent the weekend fighting high fevers and feeling worse than I have in years, but thankfully I was well enough to head back to NY by Tuesday, March 20.

Collin had his fourth 3F8 treatment on Wednesday, March 21. He was still having problems with diarrhea. When the diarrhea began after the first 3F8 treatment, it didn't have the distinct odor common with c-diff (he's had it twice before so unfortunately this is a smell I have experienced), so I was surprised by the c-diff diagnosis. At that time I questioned whether the diarrhea could have been caused by the treatment or one of the medications he's on to protect his thyroid from the radiation (the paperwork for one says that if diarrhea develops, a dose adjustment may be needed)  but was told it wasn't likely. Since the diarrhea was still an issue after two weeks of antibiotics, they checked another stool sample for c-diff, but this time the culture came back negative; however this was expected since he was still on antibiotics. They told me to stop the antibiotics to see what happens, and conceded that perhaps it was being caused by the treatment or one of the medications. I doubt we'll ever know the cause, and nor does it matter; I'm honestly just tired of dealing with it and wish it would go away. Collin's new mantra is "Sore heiny...NO FUN!!!"

The 3F8 injection that day was planned for around 2 pm, so Collin's nausea and pain pre-meds were given accordingly. However, the injection didn't clear the QA process, so they had to prepare another one. This injection wasn't ready until around 4 pm, so by the time it was given, some of the pre-meds were wearing off.  So, Collin vomited for a little while after the injection, but once second doses of the nausea meds could be given, he started to feel better. Before he was discharged that evening, Collin was eating again, demanding food because the steroids were making him hungry, as well as cranky and unhappy. Wednesday evening and Thursday morning, Collin was having tantrums and behavior that weren't common  for him. Between the constant traveling, being away from home, treatments, and steroids, it wasn't at all surprising, but it was still draining to deal with and frustrating not to be able to help him calm down.

Last Wednesday, March 28, was Collin's last 3F8 treatment. When Collin woke up that morning he seemed fine, but then he barely ate any breakfast, which was a little out of the ordinary. When he was admitted after breakfast for his treatment and his vital signs were taken, we found out he had a slight temperature. His bloodwork was taken, and the nurse brought him a dose of Tylenol to see if it would help the fever go down. As soon as I gave him the Tylenol Collin threw it up, so they decided to draw more blood for cultures, get a urine sample, and planned to take a CSF sample to make sure he didn't have a serious infection brewing. We were also moved to an isolation room. Another dose of Tylenol was given, and thankfully Collin was able to keep it down. They decided that as long as his fever didn't continue to climb (thankfully it didn't!), they would give him his treatment. Of course he threw up almost immediately after the injection was given, but the vomiting didn't last long. Then he slept for a while afterwards. By the time he was discharged, he was ravenous and cranky, just as he was the week before. By then he also had a runny nose, so I figured he had developed a cold and on top of everything else, he just didn't feel well. Thankfully his cultures stayed negative, which meant he had no infections brewing.

We were entertaining ourselves with gloves for a while....

Collin rested for quite a while after the final injection.

Since being home after the final treatment, Collin is much happier. He has finished the steroids, which also helps. He has another week on the thyroid medications, so I'm anxious to see if the diarrhea clears up once he's off them. I think it will be good for his body to get a break from medication. This week we are staying close to home and resting as much as possible. I am trying to get organized again so I can try to get caught up on things that I'm behind on and get back in "control" of my life. Collin's next MRI isn't scheduled yet, but should be sometime in the beginning of May. We have to go back to NYC for it, but we are planning to take an extra day or two to do some fun things in the city with Neya and Collin. Once we know the MRI results, we will discuss with Collin's doctors what comes next in his treatment plan.

Please pray that Collin's next MRI is clear. Please also keep Collin's oncologist in your prayers. She has been fighting cancer in her pediatric patients for 20 + years, but I have recently learned that she is in the middle of her own battle with breast cancer. And, please keep fellow medullo warrior Bree and her family in your prayers. They have been in my heart since her grandma and I met online in 2010 after Bree's diagnosis. Two year old Bree earned her angel wings two days ago, and my heart is broken for her and her family. Oh how I wish cancer would leave our babies alone!