Friday, August 31, 2012

Friday, August 31, 2012

Last week the oncologist had talked about starting the next course of chemo, but then we found out that Collin's platelet count was too low. This week, we found out that his counts had gone up on their own, but Dr. Vats felt that doing the chemo right now during radiation would hit Collin's counts too hard. Dr. Comito agreed; we don't want Collin to become dependent on weekly transfusions. Plus each time we give him more chemo, we increase his chance of developing a secondary cancer like leukemia. So we will wait until after the radiation is complete, see what the post radiation MRI shows, and decide whether to do the chemo or go back on maintenance therapy.

Wednesday was Collin's final session of full craniospinal radiation, and Thursday he started the first of 10 sessions of what's called a boost. Now, instead of getting a consistent dose of 36gy to his entire brain and spine, he will be getting a higher dose of 54gy to certain areas of his brain only, where the new tumors had grown. His last boost will be on September 13, and then the radiation will be done. Overall, Collin seems to be handling the radiation pretty well...he hasn't been nauseous or vomitted in a while, he doesn't have any mouth sores, throat pain, etc. but the skin along his spine, the back of his neck, and especially on his head is red and looks sunburned. There are even small areas on his ears and head that look blistered. Thankfully they don't seem to be causing him any pain, but I'm putting aloe all over his head and ears to help his skin heal.

This week, Neya would have started third grade if we were home. I feel bad that she is missing out on being back at school, and with her friends, but I don't regret keeping her and Collin together for the rest of his treatment. I just hate that we've had to make the decision in the first place. She has been journaling, reading, and working on math and spelling with my mom while Collin and I are at his appointments. Thankfully her teacher got some of her schoolwork together and Bill has sent it down, so she will have that to work on as well and she won't get behind.

We had a great, but way too short, visit with Bill, who flew home Tuesday. Collin doesn't have radiation on Monday (Labor Day), so he has a three day weekend during which he can eat whenever he wants and take regular baths. On our way home this afternoon, he said, "My tubie gone. No more sponge bath! Yay, me!!!" I'm hoping to catch up on email, thank you notes, etc., and just having some down time this weekend. We're coming into the home stretch, and are looking forward to getting home and having the four of us together under one roof again. It may sound strange, but as much as I'm looking forward to the end of Collin's treatment, I am also very apprehensive at the same time. Historically Collin's cancer has responded well to treatment, but then comes back. When I think of the upcoming MRI, and the ones that will follow, I feel sick to my stomach. If the cancer returns after the radiation, I don't know what will be left to try. I'm really struggling with not letting fear get the best of me.

Saturday, August 25, 2012

Friday, August 24, 2012

I can't believe another week has flown by; of course it's been another busy one. I really had no idea our schedule was going to be this intense!

Monday we had our "Weekly See" with the radiation oncologist, which is basically a quick weekly check-up. Overall, Collin seems to be handling the radiation well. He's not feeling sick, hasn't thrown up in a while, doesn't complain of his throat or anything else hurting, and doesn't seem to have much of a decrease in his energy level. He did lose a bit more weight though; according to the scale at the Proton Center, his weight went from 15.3k on Aug. 13 to 13.9k on Aug. 20. That's a little over 3 lbs in one week. I think he may have had his shoes on when he was weighed on the 13th, but his shoes certainly don't weigh anywhere close to 3lbs! It can be tough to get enough food into him during the week. Most of his radiation treatments are scheduled in the afternoon, and since he's put to sleep for each treatment and can't eat for the eight hours beforehand, he basically misses breakfast and lunch five days a week. Then, when he wakes up from anesthesia, his moods vary. Some days he wakes up happy and will eat something right away; other days he is still groggy and grumpy when he wakes up, and won't eat anything. Then when we get home, and he may or may not be interested in dinner, but even if he is, he usually doesn't eat much. I touched base with the nutritionist, but other than one or two suggestions, she feels we're doing everything we can to get him to eat; we just have to keep at it. Whatever he asks for, we'll give to him, even if it's not the most nutritious thing for him.

Tuesday morning we had a clinic visit with the oncologist. Ironically their scale showed Collin was up almost a quarter of a pound in a week. I expected that Collin would need more platelets, because he seemed to be bruising very easily. I was surprised when the labs from the day before showed that his platelets had dropped, but not low enough to need a platelet transfusion yet. The labs also showed that his hemoglobin had dropped to 8.3, which meant he needed a blood transfusion asap to get his hemoglobin back up to at least 10. The trick was fitting it into our schedule. A transfusion of packed red blood cells usually takes 3-4 hours, but there wasn't enough time in our schedule Tuesday or Wednesday to fit it in (radiation treatment times for the week are pretty much set in stone). In the end, we squeezed a transfusion in that day before his radiation treatment; he only got about half the blood because that's all there was time for, but at least it was better than nothing. His labs would be checked again in the middle of the week, and another transfusion could be more easily scheduled at the end of the week if it was needed. The oncologist had planned to start another course of chemo Tuesday, but even though Collin's platelets were not low enough to warrant a transfusion, they were too low to start the chemo. Hopefully they will be higher next week.

Wednesday was the longest day of the week; we were gone for nearly 11 hours that day! First, we had an appointment with the pediatric neuro-ophthalmologist we were referred to. We were able to get a quick appointment date due to a cancelation in their schedule, which is why we couldn't easily change the appointment for anything. The doctor was excellent, and I left after the appointment crying tears of relief and happiness. After the surgery to straighten Collin's eyes in 2011 didn't work, that ophthalmologist recommended two more surgeries. Before making any decisions, we took Collin back to the original ophthalmologist who sent us for the original MRI in 2010 for a second opinion. He disagreed with the second surgery that the other eye doctor wanted to do, but agreed with the need for the third surgery. However, he was not able to do it himself. Well, the ophthalmologist we saw Wednesday agrees with the original ophthalmologist, AND can do the surgery. She also knows of another specialized doctor who can actually insert a tiny weight into Collin's right eyelid to help it close all the way! Those two surgeries would help Collin's eyes so much!! So the plan right now is for me to really lubricate Collin's right eye for the next month. Since his right eye doesn't close all the way and I have not been good about putting drops in it, it is extremely dry and he cannot see very well out of it. She feels that some of the vision in the right eye will improve if the dryness is decreased, so I'm now putting a drop in the eye every hour while Collin is awake, and putting ointment in the eye at night when he is asleep. Then we will see her again in about a month, after Collin is done with radiation, and we can schedule the surgery to straighten his eyes. Depending on when the surgery can be scheduled, Collin and I can either stay here a little longer, or fly back down for it. After the eyes are straightened, we can look into having the tiny weight put into his eyelid.

So, after an early start Wednesday to see the eye doctor and spending a few hours in her office, we headed across Houston to the Proton Center for Collin's 2pm radiation appointment (which was #15, the halfway point of his treatment!). However, part of the gantry wasn't working, so they had people there trying to repair it. By the time everything was back up and running, it was over two hours after Collin's appointment time, and there were still two patients before him. One of the patients does her radiation treatments without anesthesia, so in an effort to not keep Collin waiting any longer, she was given the choice of coming later, or skipping her appointment. I guess the other patient skipped their appointment too, because once the machine was fixed, they treated Collin right away. Since we ended up spending about 5 hours at the Proton Center that day, we got home pretty late. Thankfully, Collin handled the delay without one complaint, even though he must have been starving! He was quite happy to spend a few extra hours playing in the playroom!

Blood was taken at the Proton Center Wednesday afternoon to check Collin's labs, and he was tentatively scheduled for a blood and/or platelet transfusion at the clinic Thursday morning before his radiation treatment in the afternoon. Thankfully his hemoglobin had increased to just over 10, and his platelets had increased a little on their own (although still not enough to start chemo), so we finally caught a break and didn't need to head downtown early for any transfusions. Thursday evening Bill arrived for a few days, and we were all very excited to see him! Today, Bill finally got to see the gantry, learn a little bit about how it works, and see the control room. It is really quite fascinating, but that will be a blog post for another time. Collin is very happy that his port is de-accessed for the weekend; no tubies means no sponge bath! Poor Collin has been talking all week about when his tubie comes out and he can take a regular bath; he truly does find joy in the smallest things the rest of us take for granted! This weekend, we're just going to have some fun, relaxing time together as a family!

Thursday, August 16, 2012

Wednesday, August 15, 2012

As you can imagine, by the time I get home each day, eat dinner, and get Neya and Collin to bed, I am exhausted and have been going to bed as well. Then, at the hospital and proton center, I haven't been able to connect to the internet since Saturday, so that's why it has taken so long to get these updates posted.

Collin had his 9th radiation treatment yesterday. I have been talking to the Child Life counselor, who is a wealth of good information. Collin has been asking questions about radiation, and I've been answering them the best I can in a way I think he can understand. But he's also been telling me he doesn't like the medicine that puts him to sleep (propofol) and that it, or the radiation, scares him. Wendy was able to describe to me what children see and hear as they fall asleep, and this insight will help me be able to ask more specific questions about what bothers him so I can try to help him feel better about it.

After radiation yesterday, Collin was seen by the oncologist who is following him here. We had been discussing whether Collin would have any chemo during his radiation, which could help sensitize the tumors and cancer cells to the radiation. Dr. Vats spoke with Dr. Comito, and they have decided that one of the drugs they were considering would drop Collin's counts too low, and the other drug will be used as a maintenance drug for a length of time after the radiation, so they don't want him to develop a toxicity to it by using it now. Instead, towards the end of the course of radiation, Collin will do another round of chemo like the last three he has done, consisting of ten days of oral chemo, and then a short inpatient stay for Cytoxan. I am unsure whether this round of chemo will be completed while we are still here in Houston, or after we return home.

Last night out of the blue as we were sitting in church, Collin's nose started bleeding. It bled on and off for about an hour, and while we were holding tissues under his nose, Collin became very drowsy and difficult to rouse. I called the after hours emergency number because I was concerned that the bleeding wasn't stopping, and that he was becoming lethargic. The covering resident spoke to the fellow, and although Collin's platelet level was fine according to the previous day's labs, he advised us to take Collin to the nearest emergency department to have him evaluated. By the time we got Collin into the car, the bleeding stopped, and he was his normal self. In the end we decided that he was just tired, and had been falling asleep because he finally relaxed when we made him sit still, so we decided not to go to the emergency department unless the bleeding started again over night. Thankfully it didn't!

Today while Collin was having his radiation treatment, I was talking with a mother who is also having radiation to her brain. I have talked with her a few times, and she has described some of the side effects she has has experienced during radiation. I told her about Collin's nosebleed last night, and she told me how the radiation makes her nose burn and feel very dried out. Her eyes and mouth are also very dry from the radiation, so she uses saline nasal spray, eyedrops, and sugar free candy throughout the day. Tonight I used saline nasal spray on Collin, and although he screamed when I gave it to him, when I was done he said, "That feels better. That's not so bad." I wonder if he'll remember that the next time I give it to him?

Monday, August 13, 2012

This morning when I woke up, I went to change Collin's diaper, and found out it had leaked, so I had to get him and the bed cleaned up and changed. In the process, his IV line got caught somewhere (I think in the siderail) and pulled out of his port. So the line had to be taken out, his chest had to be numbed, and his port had to be reaccessed with a new line. I felt horrible, because it caused Collin enough pain that he was screaming. Thankfully as soon as the line was taken all the way out, he felt a lot better, and he didn't even cry when I re-numbed the area and the new line was put in.

Since Collin was still inpatient this morning, arrangements were made for an ambulance transport over to the Proton Center for his radiation treatment. I told Collin it would be an adventure, and he was quite excited. He eagerly rode on the stretcher, and seemed to enjoy the whole experience. Of course once we got to the Proton Center, he couldn't get to the playroom fast enough! After his radiation, he woke up in a good mood, and was very happy to return to the playroom to wait for the ambulance to take us back to the hospital. He was still a bit loopy from the anesthesia, and was so funny on the ride back! The ambulance crews were great with Collin, and seemed to get a kick out of him.
Collin enjoying his ride on the stretcher to the ambulance

The ambulance that transported Collin between the hospital & proton center

Collin in the ambulance
Loopy Collin chillin in the ambulance after radiation

When we got back to the hospital, we learned that his cultures were still negative, which meant we could go home. Collin's blood counts are also high enough that I can stop giving him the G-CSF shots! I ordered a late lunch for us (at 2:30) before we left, since neither of us had eaten yet (MD Anderson has room service for all meals, so you pick what you want from their menu, call it in, and they bring it to the room. They will bring orders for the patient and guests, so it's great because I don't have to leave Collin by himself to get myself something to eat). The ride home was adventure.

We were coming home during rush hour, so there was quite a lot of traffic and it was moving pretty slowly. In the lane next to me, there was a guy riding a sporty motorcycle, going a bit faster than he should have, weaving his bike back and forth in his lane, just being careless (in my humble opinion). All of a sudden, he had to brake hard to avoid running into the car in front of him, his back tire slid out from under him, and he and his bike wiped out, right there near the front of me. Thankfully traffic was going slow enough that we could easily stop without hitting him! He got right up, I stopped next to him, and rolled down my window to ask if he was ok. He said he was, and got his bike off to the side of the road. He was wearing shorts and a t-shirt (so I'm sure he had a nasty case of road rash), and no helmet. I hope he realizes how lucky he was today, because if traffic was going any faster, I or the car to my right would have hit him after he fell. Then, a little while later as I neared the exit I needed, I noticed quite a lot of smoke up ahead. As I got closer, I could tell it was coming from the road, and figured it was a car fire. As it turned out, the grass between the highway and my exit lane was on fire, so when I stopped at the traffic light, I called 911. Luckily, they already knew about it and had a fire truck on it's way. Thankfully it wasn't a burning car and no one was hurt!

Sunday, August 12, 2012

I was looking forward to a relaxed weekend, but it wasn't meant to be this weekend. Saturday morning I went to get my haircut. When my mom and I left, Collin was fine. When we got home an hour and a half later, my dad said he had taken Collin's temperature because he had thrown up; the first time it was 101, and the second time it was 102. I took it again, and it had climbed to 102.5, so I immediately called the hospital. We loaded our stuff into the car, and off we went to the MD Anderson Emergency Center. My adrenaline was high, because I know how quickly things can happen, and we're not a quick ten minutes away from the hospital like we are at home. Thankfully we got there without Collin getting worse. They took blood for cultures, started him on broad spectrum antibiotics, and admitted him to the pediatric floor. He was tentatively scheduled to have a platelet transfusion Monday afternoon, but his level was significantly lower than it was Thursday, so he got platelets Saturday evening. I also had to give him another G-CSF shot because his white count was still very low. By the end of the day, Collin's fever was down to normal, he was keeping food down, and was clearly feeling better.

Collin in the emergency center

Collin sleeping while getting antibiotics

So today, Collin will continue to have his antibiotics. Tomorrow he will be transported via ambulance to the Proton Center for his radiation treatment. The doctor said this morning that if the cultures are still negative by tonight or tomorrow, and Collin's counts come up enough, he may be discharged later tomorrow after radiation. Fingers crossed!

Friday, August 10, 2012

This week has been so busy that it's flown by...I can't believe it's Friday! Our schedule is grueling, and it's probably not helped by the fact that I've chosen to drive back and forth for now-it certainly takes up more of my time and adds to my exhaustion. But it's a trade-off; in return for driving back and forth, Collin and I get to see Neya every day, and have is family support and help when we get home. So the drive is worth it even though it can be difficult. It's a good thing my perspective has been changed over the last few years, and a lot of things don't bother me the way they used to. Traffic can be unbelievable at certain times of the day, but I'm not letting it get to me.

Radiation seems to be going pretty well. So far, Collin doesn't seem to be feeling too sick from it. Sunday he threw up without warning as he finished eating his dinner, and Tuesday it happened again (that time it was in the hospital cafeteria after a very long day...I'll spare you the details, but let me just say it was NOT fun!) I've started giving him Zofran every 8 hours, which seems to be helping. I don't know if these incidents were related to the chemo he recently finished, or the radiation, but I'm very glad it's only been a few times! Collin asks me questions every day about radiation, such as "Why I need radiation, Mommy?", "I have more radiation tomorrow?", "Why I go to sleep for radiation?" and "I eat after radiation?" He tells me he doesn't like taking the medicine that makes him go to sleep, and sometimes he tells me he's afraid. I can't even describe how it feels to hear him say that; it breaks my heart. I've seen him put to sleep countless times, but it's still unnerving. And to see him positioned on the gantry, with the mask over his face and bolted to the really looks barbaric. But the radiation staff are amazing, wonderful people, and they take great care of Collin, so I know he's in good hands.

Collin's Radiation Mask

Collin needed another blood transfusion Tuesday because his hemoglobin had again dipped below 10. Then because his white blood cell count had gone so low, meaning his immune system is basically non-existant, I had to start giving him the G-CSF (neupogen) shots. At home, Bill gives the shots, but since he's back in PA, I have to give them. They have gone amazingly well, and Collin hasn't cried at all during them (except when he and Neya fight over who gets to put on the band-aid!) I feel much more confident giving the shots now than I have in the past.

Sunday, August 5, 2012

Sunday, August 5, 2012

Monday we met with the pediatric oncologist who will be following Collin while we are here in Houston, and learned that he was still planning on admitting Collin that day for his IV chemo. He also informed us that Collin's hemoglobin was low (it was 7.9, and needs to be at least 10), so he needed a blood transfusion that day as well. We were admitted around 3:30 Monday afternoon. They had to type and cross Collin's blood, which took hours, so his blood transfusion didn't start until 10:15 pm. The transfusion took four hours, and then Collin had to have his IV hydration for the chemo. This ran over three hours. So his chemo didn't actually start until 5:00 Tuesday morning. Once it finished at 11:00 am, the mesna (rescue agent) ran for 12 hours. The second dose of chemo started at 5:00 Wednesday morning, so the mesna wouldn't be done until 11:00 Wednesday night, so we stayed in the hospital until Thursday morning. Thankfully the hospital stay was uneventful; Collin did not get sick at all from the chemo, and I had my hands full entertaining him the whole time (which is a good problem to have!) The hospital room was comfortable, and every single member of the hospital staff was very friendly and caring.

Captain Collin
Collin trying on a new hat...yes, it was clean!

Collin napping in the hospital

Collin wearing face paint

Collin and Neya on the observation deck

We were discharged Thursday morning around 11:30, and went directly to the Proton Center for Collin's first radiation treatment which was scheduled for 1:30. At the same time Collin was being prepped for treatment, Bill was taking off on his return flight home. I was holding it together pretty well until the anesthesiologist asked "Where's Dad?" As I watched Collin be put to sleep and be positioned on the gantry, I fell apart. I wished we didn't have to put Collin through any of this, and I wished Bill could be there with me. I tried to pull myself together while I tried to eat a little lunch, but it was hard. The first treatment took about an hour and fifteen minutes. When Collin was in recovery, I went to sit with him. It took him a while to wake up, and when he did he was very groggy and cranky. He was hungry, but he just kept putting his head down and not eating when I offered him food. Finally I just got him into the car and drove home. He slept the whole way, but his mood was a bit better when he woke up. The only thing we could get him to eat that evening was some ice cream.

Friday was his second treatment. Again he couldn't have anything to eat for eight hours before the treatment. He handled it pretty well though, despite his treatment being delayed for over an hour Friday afternoon because one of the machines broke down. Thankfully he woke up much quicker and happier, and he ate a bit of lunch (at 3:30) before we got in the car to drive home. They are constantly rearranging the schedule as people begin and end treatment, and they do their best to get the younger kids scheduled early, so next week Collin's treatments will be earlier in the day. I am hopeful that will help get him back into a more normal routine for eating.

Collin making Mr. Potato Heads before radiation Friday (because, what else would Collin be doing in a playroom?)

Next week will be busy again; along with the daily radiation treatments, Collin has clinic visits and a hearing test on the schedule. With all of these different appointments, along with the drive back and forth, we'll be keeping pretty busy.

Please keep our friend Bella in your prayers. Hospice has been called in, and she's on morphine around the clock to keep her pain at bay. I can't believe that when we saw her a few weeks ago in clinic, it would be the last time we'd see her. It breaks my heart to think about what her family is going through. I hate cancer soooooo much!!!