Wednesday, March 30, 2011

Round 2 is complete!!!

Carter received his last dose of chemo for round 2 on Monday!!!! And I got to talk with Carter's attending physician. We haven't been on the same schedule as him for about a month and a half so it was good to talk with him again. I think I've mentioned this before, but I really like him. I got a "road map" of this next round. It's called "Interim Maintenance" and it will last 8 weeks as long as there's no delays for low counts. As I said last week, Carter will be admitted to the hospital every two weeks to get High-dose Methotrexate. In order to start this round and before each additional hospital admission his ANC has to be at least 750 and platelets 75,000. His counts are still pretty low right now. White blood cell count of 400 with ANC of 0. Hemoglobin 6 and platelets 63,000. Round 3 is scheduled to start a week from tomorrow so he has that long for his numbers to recover. I also might be taking him in tomorrow to get more blood. His counts are right on the border of needing a transfusion but they should only be getting better now since he's not getting chemo. The doctor told me to just see how he does these next couple days and call if he's really tired or just not himself. Yesterday and today, he's been exhausted. I'm thinking I'll call this afternoon for an appointment tomorrow. Other than that, not much to report.

I'll leave you with this video. This is Carter's favorite song right now: "Families Can Be Together Forever". It's churchy. If you're not interested in that, then just watch Jude in the background and have a good laugh :)

This song is very close to our hearts and I love hearing him sing it.

Wednesday, March 23, 2011

More Clinic, more blood, more platelets, some fish

Our clinic visit on Monday was kinda rough. In addition to the usual port access, Carter had to get two shots in his legs. The Aspariginase medicine has to be injected into a muscle. He was not a happy camper. He also got Vincristine through his port. His counts are really low. The nurse even did a second sample to make sure it was right. White cell count of 700 and ANC of 400. Hemoglobin 5.8 and platelets 18,000. So the doctor set up an appointment for the next morning to get blood (just red cells) and platelets. I knew that appointment would be rough because of the extra pokes so I told Carter that morning that if he was really brave at the hospital then we would get him some fishies. He really loves fish. So that night he got 3 fish since he had 3 pokes. He really is such a brave boy!

(He refuses to name them anything but "fish 1" & "fish 2". "Fish 3" didn't make it very long...)

So yesterday morning we headed back to the hospital. We didn't get off to a great start - he threw up in the parking lot. And to the family who walked by us, sorry you had to see that. Once we got in, I asked the nurse to give him some zofran (anti-nausea) through his port, since he refuses to take the oral form at home. He was fine the rest of the day, thank goodness. His port was still accessed from the previous day, so yesterday was easy and fun. His counts were even lower than Monday. White cells 400 and ANC of 0. Yikes. Hemoglobin 5.3 and platelets 13,000. The blood takes about 3 hours to infuse then the platelets take another hour. We ended up being there for about 7 hours all together. There's usually volunteers in the playroom who do crafts and play games with the kids. The girl who was there yesterday was amazing. She played with Carter a lot. She even helped him make this crown:
He had a lot of fun. I was so glad to have a easy fun day at the hospital finally! Maybe I won't have to drag him out the door to go back next week. :) And today, after getting blood, he's got all sorts of energy. He and Jude are racing around the house. And Carter's winning!

Monday, I also got a little more information about his next round that starts April 7th. I'm not looking forward to it. It will start with a clinic visit with a sedation for a lumbar puncture. From there, he will be admitted to the hospital and receive a drug that's called something like "high dose methotrexate". I don't remember the exact name, but I'll tell you next week after I meet with Carter's doctor. Anyways, the drug is very intense. A day or two after it's given, he will be given a "rescue drug" to stop the first one from, well, killing him. Once the toxicity level in his blood goes down enough (usually about 4-5 days total in the hospital), we will get to go home for whatever is left of two weeks. Then we'll do it again, 4 times total.

Sounds fun, huh?

Tuesday, March 15, 2011

Clinic 3/14

Our clinic visit yesterday was the fastest one yet. If we didn't have to wait for the prescriptions from the pharmacy, we would've been in and out of there within an hour and a half! But waiting for the drugs added another hour and a half. After he was accessed (which is NOT getting any easier), he had his zofran (anti-nausea) and then his chemo which only takes about 3 minutes. Then the doctor came to check him out. All of this was done in the dark because the Child Life Specialist came and brought him a triceratops flashlight to play with. So he, of course, had to have the lights off and the door closed. The nurse was so sweet and did everything by flashlight :) Carter's counts are low, but that's expected after all the chemo he got last week. White blood cell count 900 ANC 600. Hemoglobin 9.0 and platelets 129,000. He'll probably need another blood transfusion and/or platelets next week.

This picture is hanging in the playroom. One of the patients colored it and the words she wrote made me laugh.

So, how is Carter doing? This is a question that we're asked quite often. So here's a more detailed update for all those wondering. He's doing pretty good. That's what he'll tell you if you ask him :) He still wants to play a lot and be a normal 3 year-old boy. But there are some hard things going on over here. He rarely sleeps through the night. Maybe 2 or 3 times in the last 2 1/2 months. And that was when he had pain meds before bed. He wakes up every night screaming and crying because he's in pain. He can't tell us what hurts, so it seems that it's just everything. One of his medicines messes with his nerves and I think that's the culprit. His crying wakes up Jude, who then thinks it's morning and cries when we make him go back to bed. It's not pretty.
He throws up a lot. The good thing is, that afterward he's totally fine and doesn't seem too bothered by it.
He's losing weight. He weighs less than a pound more than Jude right now. His legs used to be so strong and looked so big and muscular next to Jude's. But now, they are just little sticks. He rarely wins in a tug-o-war against Jude. He rarely wins at anything against Jude. Jude is loving being the big tough one, and poor Carter is kinda scared of him. And then there's the never-ending medicine. Carter is just so sick of taking medicine every day! There's an antibiotic that he takes on the weekends and the taste of it makes him throw up. Sunday night, he threw it up the first time I gave it to him so the second time I mixed it with applesauce. It seemed to be a little better when he tried the first bite but then he still clamped his hand over his mouth and refused to eat any more. His awesome daddy took matters into his own hands and made a little deal with him. For every bite of applesauce-medicine Carter ate, Dennison would drink some vinegar. One thing that has come from all of this is that Carter kinda likes to watch other people suffer because it's finally not him! So this deal made him grin from ear to ear. It worked like a charm.
And one more thing. Let me just tell you how wrong it feels to have to wear gloves to even handle the medicine that I then let my child swallow or inject into his port which leads straight to his heart. We have to put the lid down and flush twice after he uses the potty, wear gloves when handling any bodily fluids, wear gloves when doing anything with his medicine. The nurses wear full on disposable gowns and gloves just to hook up the bag of medicine to his IV. Everything inside me screams, "THIS IS NOT RIGHT! I SHOULD NOT ALLOW THIS!"
But it's better than the alternative.

So the bottom line is that everyone in this house REALLY hates cancer.

Tuesday, March 8, 2011


I'm sick. Not as sick as I was last week but still sick. And due to a large increase of RSV cases in the hospital, the oncology unit and clinic have made some new policies to protect its patients. Visitors or family members 12 and younger are not allowed (with the exception of breastfeeding babies). Everyone who comes in must go through a health screening. Patients who are at an especially high risk are put in isolation. And patients with sick parents (Carter) or who are sick themselves are also put in isolation. Good thing I didn't have a fever anymore or we would've been sent home! So our entire 8 hour day at the clinic yesterday was spent in one room. The nurses and doctors had to put on a full disposable gown, gloves, and a mask just to come into our room. Then take it off at the door and throw it all away before leaving. Even the food we ordered had to be on disposable dishes. I felt like I had leprosy. Or the plague. And I felt so bad that it was my fault Carter had to be stuck in that room all day long. He couldn't even leave the room to go potty (they let me leave for that reason as long as I washed my hands first and wore a mask.)! He thought this toilet cabinet was both hilarious and awesome. He wants one at our house. I thought it was pretty funny too, and I'm so glad they didn't made me use it!

Other than all that, it was a pretty good day at the clinic. Carter's counts are still good but won't be for long with all the chemo he got. White blood cells 3800, ANC 2400. Hemoglobin 9.6 and platelets 360,000. He got Cyclophosphamide which is why we were there for so long. It's a once a month drug because it's intense and lasts a while. He has to be on IV fluids for about 2 hours before getting it and then 4 hours after. It has a side effect of being harsh on the kidneys and bladder so they want him well hydrated. And we're back on the chemo that I have to give him at home through his port. He's pretty bummed that he has to have his tubie in still.

Last Friday, Carter had to go back to the Emergency Room. That's three times in less than a week! He had a fever again (which was gone by the time they got to the hospital, of course!) and it should've been the same as last time. If his counts were still good (which they were), they would give him an antibiotic and send him home. Well, it was about 1 or 2 in the morning (Dennison was with him) and the ER doctor came in to check him out. Carter was sleeping so the Dr. woke him up and started pushing on his stomach to see if he had any discomfort. Well, of course Carter started freaking out, he'd just been woken up by a stranger who was now pushing on his stomach. The Dr. took this to mean that his stomach was really hurting. Dennison didn't think his assessment was accurate so a little later he pushed on his stomach and Carter had no reaction. He told the Dr. but it didn't change his opinion. He admitted them to the hospital. Once they got upstairs, the Oncologist came to talk with them and Dennison asked him if the only reason they were admitted was because of the stomach thing. The Dr. told him yes and that he didn't agree with the decision but the ER Dr. felt very strongly about admitting them. So the plan was to be there for 24 hours. As long as the fever didn't come back and the blood culture was clean. In the morning, the Oncologist came back and did another exam on Carter. He was totally fine so the Dr. said that there's really no reason for him to be there and sent them home. Kind of annoying that they had to stay the night for no good reason, but better safe than sorry I guess. And we all got to go to church together on Sunday!

Let's hope this week is a lot more boring than last week!

Thursday, March 3, 2011

ER. Again.

Yesterday was spent in the Emergency Room again. Tuesday, he'd been a little warm, just in the 99 range, but was acting fine. I've been instructed (more times than I can count) to call the hospital if he gets a fever of 100 or higher. Wednesday morning he woke up with a fever of 101. I called and the doctor told me to take him into the ER to get a blood culture, CBC, and a dose of antibiotics. As long as his counts were still good, we wouldn't have to stay over night. He wasn't acting sick and he had no other symptoms. So we drove down there and got everything done. It just takes so LONG to do it all. And we just have to stay in that little room and hope Vienna doesn't catch RSV from the baby in the room next to us or that Carter doesn't catch ANYTHING from ANYONE there. I really don't like the ER. But his counts were still good so we didn't have to be admitted. Hallelujah. Now as long as his blood culture is clean after 48 hours, we'll be good to go. He's doing fine today so I'm just keeping my fingers crossed.

I've been asked about his medications and side effects and such. So here's a quick run-down, if you're interested. At the beginning of each round, I get a full sheet of info on each drug that he'll be getting that round. This round he's on 6 different ones, not all at the same time.

Cytarabine- this is the one that I have to inject into his port. Side effects include nausea, vomiting, loss of appetite, diarrhea, low blood counts 1 to 3 weeks after treatment, mouth sores, hair loss, abnormal liver function tests, irritation to the eyes with higher doses, flu-like symptoms (fever, aches, fatigue).
Asparaginase- this one is given as shots in both legs. Side effects include loss of appetite, local skin reaction at injection side, high blood sugar, allergic reaction, drowsiness or headache, increased thirst or urination, decreased clotting factors in the blood.
Vincristine- this is the one that gave him the leg pain last month. He's on it again now, but not as often. Side effects include constipation, stomach pain, hair loss, irritation of nerves: numbness and tingling of fingers and toes, muscle weakness, drooping of the eyelids, blurred or double vision, jaw pain, seizures.
Intrathecal Methotrexate- This one is injected into his spinal fluid once a week. Hence all the sedations. Side effects include mouth sores, nausea, vomiting, loss of appetitie, abnormal liver function tests, kidney damage, headache, drowsiness, blurred vision, low blood counts, hair loss, skin sensitivity to sunlight, darkening of the skin, eye sensitivity to sunlight.
Mercaptopurine- This one is a pill that I crush and mix with raspberry syrup. He calls it his yummy medicine :) Side effects include low blood counts, mouth sores, skin rash, mild nausea, abnormal liver function tests.
Cyclophosphamide- When he gets this one, he has to be on IV fluids for 3 hours before and after. Side effects include nausea, vomiting, loss of appetite, hair loss, low blood counts, blood in the urine (bladder irritation), metal taste in the mouth, hormonal changes, heart damage with high doses.

Yes, I can pronounce all of them :)

Whew, that was kind of depressing! But the good news is, Carter's side effects have been pretty minimal, considering. He vomited every day last week but not at all this week so far. The doctor thinks it was from the Asparaginase shots, even though that's not one of the listed side effects. He still has a lot of hair, for now. He had the leg pain last month. Sometimes he'll get achy. I think that's all. At least that's all that I've noticed or that he's told me about. Or that I can remember right now.
How cute is this?! Carter at 4 months old with his favorite blue blanket that still goes everywhere with him.