Friday, April 22, 2011

One Year Ago... I wake up and think about the things on my to do list for the day, it seems kind of surreal to me. Take the kids to get a picture with the Easter bunny. Take Collin to a doctor's appointment. Work on laundry. The kind of things most people are lucky enough to take for granted. But I am more thankful than you can imagine to be doing those normal tasks today. Because today is a day I wasn't sure I'd see. One year ago today, my world fell apart. One year ago today, my sweet, innocent baby boy was diagnosed with cancer. I had never felt such helplessness, fear, or despair in my life.

When Collin was first diagnosed, there were some thoughts that occurred to me that I haven't shared with many people up until now. When I had my first baby, I didn't really know just how fast the time would go, and that in the blink of an eye, she wouldn't be a baby any longer. People told me that time would fly, but I was so wrapped up in learning how to care for this tiny new person in my life that I didn't stop often enough just to enjoy it. But when Collin came along, I knew better. There wasn't a day that went by that I didn't know how lucky I was to have him. I enjoyed the softness of his hair, hearing the little sounds he made, seeing all of his expressions, and inhaling his scent after he was freshly bathed. I didn't mind so much when he woke me in the middle of the night. I loved just holding him, and watching him as he nursed, and worried less about the household chores I wasn't getting done, because I knew that his babyhood was fleeting. But at some point, strange thoughts began to pop into my head during the quiet times with him. I wondered how I could go on if something happened to him, how I'd survive without him. Then one day I wondered how I'd survive if someone in my family had cancer. It was kind of a bizarre thought, since at the time no one in my family was even sick. I chalked it up to me being a worrywart, and tried not to dwell on it. But now looking back, I can't help but wonder if it was life's way of preparing me for what lay ahead. Of course, Collin was the last person I expected to have cancer.

Despite the heartache and fear, there have been many blessings over the last year. The wonderful doctors, nurses, therapists, and other staff that have worked so closely with Collin and our whole family. They saved Collin's life, and have become like family to us. The love, support, and countless prayers we have received from family, friends, and even people we've never met that have held us up and given us the strength to keep going even on the hardest days. The amazing group of Penn State college students who work tirelessly to raise phenomenal amounts of money for the Four Diamonds Fund to support area families who have a child being treated for cancer at Penn State Hershey Children's Hospital and fund ongoing research to find a cure. These students are among the most dedicated and ambitious people I have ever met, and I am glad my kids have them as role models. And the other childhood cancer warriors and their families who we have met who have offered understanding, support, information, and hope. I am keeping you all in my prayers, and look forward to the day when no other parent has to endure what we've all been through.

Here's to the year ahead, a year in which I hope Collin continues to be cancer free, a year that will hopefully get us one step closer to a cure once and for all.

Friday, April 15, 2011

A huge sigh of relief!

I just read an update on Caiden, and couldn't wait to share! From his mom:

"Wow what a stressful week! First I want to share some great news; the nurse had misinformed me on the diagnosis that I had shared with every one of the dreaded Pseudomonas aeruginosa. The results were still inconclusive when she shared that diagnosis (although I didn’t know that). The two bacteria have some similar traits so that is what the doctors were suspecting and sharing with everyone at rounds. It turns out that it is a much nicer bacterium called Klebsiella which is commonly found in the mouth and gut. However it did make it to his bloodstream which caused him to become very ill with Klebsiella Sepsis. We are now back home with an oral antibiotic and Caiden is recovering nicely. Thanks to everyone for your prayers, they worked! All our love!"

Tuesday, April 12, 2011

Tuesday, April 12

I have mentioned our friend and fellow cancer warrior Caiden a few times in past blog posts. We met him and his wonderful mother in the hospital, as we were often there at the same time. Caiden, who is almost two years old, has undergone multiple rounds of chemo, as well as two rounds of high dose chemo with stem cell rescues. His poor little body has been through so much, but he was finally able to go home recently, where he has been getting more chemo, much like Collin. Yesterday, both Collin and Caiden had clinic appointments, and we went to say hi to Caiden and his mom. We found out that Caiden had been to the ER the night before because fevers (that had gone as high as 106.3) and he was receiving IV antibiotics in the clinic. He was admitted back to the hospital yesterday from the clinic because he was so sick. I just learned that the blood cultures revealed today a nasty bacterial infection called pseudomonas aeruginosa.

Pseudomonas aeruginosa is an opportunistic bacteria commonly found in soil and water. For most healthy people, this bacteria seldom poses a problem. Unfortunately, it is much more dangerous to certain populations, including those who have weak immune systems, the elderly, patients with severe burns, and in cancer and AIDS patients who are immunosuppressed. It causes urinary tract infections, respiratory system infections, dermatitis, soft tissue infections, bacteremia, bone and joint infections, gastrointestinal infections and a variety of systemic infections. Because this bacteria is relatively resistant to most antibacterial medications, infection can be deadly, particularly when it becomes an infection of the lungs or bloodstream. In patients hospitalized with cancer, cystic fibrosis, full-blown AIDS, and burns, the case fatality rate in these patients is near 50 percent.

I am asking all of you who have prayed so hard for Collin's recovery to please pray for Caiden's as well. I will do my best to keep you updated as I get information. You can read more about Caiden at his mom's blog:

Friday, April 8, 2011

Friday, April 8

Collin had his latest MRI Wednesday morning at 8:00. The MRI itself went fine. Collin woke up from the anesthesia pretty easily, and he wasn't grumpy. But this time he was pretty drowsy for the rest of the day, and looked a little drunk. I couldn't help but chuckle a little. I had hoped to have the results by Wednesday night, as his oncologist is very good about not making us wait longer than necessary because she knows that the waiting is full of anxiety. Evidently there was only a preliminary report by Wednesday night; the radiologist didn't get the final read and report up until Thursday. So Thursday afternoon I finally got the news we had been hoping for: all clear, no evidence of disease! So we get to breathe a little easier for a few months (until the next one...)

Thursday morning, Collin had his latest hearing test. He cooperated so nicely during the test, and was quite pleased to be rewarded with more stickers to add to his collection. The results weren't much different than the last hearing test; he has some high frequency loss on the right side. If he continues to test positive for high frequency loss, he may eventually need to be fitted for a hearing aide, because high frequency hearing is important when learning speech. From day to day though, he seems to hear and understand without any difficulty. He'll be retested in two months.

He is continuing to tolerate the maintenance chemo pretty well. The Accutane is causing his skin to be dry, so I keep putting moisturizer on him. He had seemed fussy for a few days, but that seems to have subsided, so maybe it wasn't caused by the Accutane after all.

In case I don't say it enough, thank you all so much for your prayers and positive thoughts. I appreciate them more than you know!

Saturday, April 2, 2011

Saturday, April 2 - Maintenance Chemo Cycle 2, Day 13

I've been trying to type this update for the last week, but I just didn't seem to be able to get it done. I've been feeling down, but I can't put my finger on any one specific reason why. I'm worn out, physically, mentally, and emotionally. I wake up feeling just as tired as I did when I went to bed, and I struggle to find energy or motivation to get things done during the day. My memory is horrible, and I can't focus. Maybe the last year is finally catching up with me.

This weekend is one year since Collin's health started to decline. It was Easter weekend, and he started vomiting that Friday. By Saturday night we had him at the ER at Harrisburg Hospital, and he was admitted due to dehydration. He vomited a lot that weekend, but there were other kids in the hospital with the same symptoms, so we thought he had the same bug they had. It never dawned on me at the time that he didn't have a fever, and that maybe that should have been a clue that something else was wrong.

To look back over the last year is overwhelming for me. I know how close we came to losing Collin. I also know how far he's come, and just how blessed we are, and I'm thankful for that every day. But part of me is also grieving, for the child Collin would have been, and the normal childhood he deserved to have. For life not tainted by the fear that lurks, making part of me afraid for what the next week, month, or year might bring. I had what I think was an anxiety attack recently, where suddenly my heart was racing, I felt like I couldn't breathe, and I was crying, just terrified that something was going to go wrong. Luckily it passed pretty quickly. Then I read an article about how parents of children with cancer suffer from post traumatic stress. Makes sense to me.

Collin's clinic appointment last Monday went well. He weighed in at 13.3 k, which is 29.26 lbs. He has recently seemed even more interested in food, and is eating like he's making up for lost time. It's nice to see him eat like he used to before he got sick. He's also doing well using utensils to feed himself. This has helped cut down on some of his frequent meal time tantrums, which (as best as I can tell) are usually caused by difficulty communicating and frustration over not being able to do things himself. Unfortunately vomiting is still an issue; sometimes it will be caused by gagging after Collin tries to stuff too much in his mouth at one time, and other times it just happens out of the blue. Tuesday was one of those nights; there was not even a warning cough or gag, just a sudden large mess. No sooner did I get his bib changed, and it happened again. I gave up on washable bibs a long time ago; I use disposable Pampers Bibsters, and we now order them by the case. I have to simplify my life where I can.

Mornings seem to be a mad rush to get everyone up, ready, and out the door, no matter how early I get started or how organized I try to be, although truth be told lately I just keep getting out of bed too late. I manage to get Collin to all of his therapy appointments, clinic appointments, etc. We're usually out for a few hours at a time for appointments. Then I try to make sure he takes a nap. If he falls asleep in the car on the way home from therapies, etc., I will sit in the car in our driveway until he wakes up, because if I try to take him out of the car, he'll wake up and then not go back to sleep. Or, if we are home, he'll only nap on me or Bill, so his naptime isn't usually time I can use to get things done, but at least I value the little bit of down time it gives me. Then there's the eye patching. His eye is supposed to be patched for two to three consecutive hours each day. I don't patch him during his therapies because I don't want to interfere with them, which mean it usually has to be done after therapy, nap, and lunch. Once I put the eye patch on him, I have to stay right next to him and keep him occupied to make sure he doesn't take the patch off. If I go try to get a jump on dinner prep, wash dishes, etc., he takes the patch off. Before I know it, it's time to pick Neya up from school, make sure she gets her homework done, referee her and Collin, etc. Then when Bill gets home we tag team to get together something for dinner, get the kids bathed/showered and ready for bed, and I get myself ready for bed. I'm exhausted by 8:00 pm. Sometimes I go to sleep when the kids do, and other times I may watch some TV or read just to escape for a little while before I go to sleep. There are always things left unfinished, and there's never much time to do things just for fun. So if I take too long to answer email, send a thank you note, return a phone call, etc., please forgive me!

Collin is now on his second round of maintenance chemo. One of the chemo drugs he's back on is very constipating for him, which adds a new level of fun to our life. The Colace stool softener apparently tastes so bad that 90% of the time he'll vomit as soon as I give it to him, so now I'm trying to find the right dose and frequency of Miralax that will help him go without taking him to the other extreme. Who knew my life would become consumed with the finer points of...digestion?!

Collin also started another chemo drug Monday that he's not been on before, called Accutane. If it sounds familiar, that is because it is used at lower doses to treat acne. It's a pretty dangerous substance; if it is handled or taken by a pregnant woman, it can cause serious birth defects, miscarriage, or stillbirth. So, I have to wear gloves and handle it very carefully since I am still of childbearing age. It only comes in capsule form, so since Collin can't swallow pills like an adult could, we were given other hints about how to get the drug into him. I use a pin to poke a tiny hole in the capsule, then quickly put the capsule into a spoonful of some sort of food (oatmeal, yogurt, Nutella, etc.) Then Collin just chews it all up and swallows it. The drug is very sensitive to light and oxygen, so it has to be given quickly once the hole is poked in the capsule. It also has some heavy duty side effects. It causes dryness of skin, eyes, nasal passages, etc., so I have to regularly administer lubricating eye drops, chapstick, moisturizing lotion, and possibly saline nasal spray, and make sure he drinks enough fluids. It causes extreme sensitivity to sunlight, so he has to wear sunscreen, a hat, etc. when going outside and he shouldn't be out for long. It can also cause things like muscle pain, joint pain, severe headache, mood swings, etc. After watching me give the drug to Collin and asking questions about it, Neya said, "You mean it's like poison?! Why are you giving it to Collin?" Smart girl. It's hard to give your child something that can make them so miserable, even though you know there's not much choice.

Collin's next MRI is this coming Wednesday (I can't believe it's been three months already). I'm trying not to be too concerned, because really he's doing so amazingly well and there's no reason to think it will show anything negative, but there's always some anxiety related to MRIs. Then he has his next hearing test Thursday, and therapies Monday, Tuesday, and Friday. Looks like another full week ahead. Please say a prayer that the MRI continues to be clear. I'll do my best to post results as soon as I know them!