Wednesday, August 25, 2010

Wednesday, August 25

Due to the effect that chemo can have on hearing, Collin's oncologist sent him for another hearing test yesterday. The results were the same as his previous hearing tests: no hearing loss in the left ear, and some hearing loss in the right ear. However, the hearing loss in the right ear is low frequency, not the high frequency loss that the chemo can cause. The hearing loss in the right ear has been present since the tumor resection, before the beginning of chemo, so the theory is that it is related to the seventh nerve damage that is also responsible for Collin's right side facial paralysis. Since the high dose chemo does not seem to have caused any hearing loss and is most effective in killing the cancer cells, Collin's oncologist has decided the fifth round will be another high dose inpatient round. She knows I want to be home for Neya's first day of first grade on August 30th, so Collin will be seen in the clinic while Neya is in school that day for the admission bloodwork, etc. Then he will be directly admitted to the hospital on Tuesday August 31st to start the next round of chemo. Hopefully it will go as well as the last round and Collin won't get as sick as he has in the past.

I've been telling Neya what an awesome job she's been doing with Collin, loving him, playing with him, helping him, etc. I had signed her up for SuperSibs!, an organization that recognizes the siblings of children fighting cancer. Today she received a trophy from them, and it really made her day! For her first day of school, she needs to bring a picture of something exciting that she did over the summer, but her summer hasn't been like everyone else's. Getting the trophy today was the perfect thing to take a picture of for the first day of school!

So, we will spend the rest of this week enjoying our time together at home before school and chemo start up again. Next week will be hectic for sure!

Monday, August 23, 2010

Monday, August 23

Collin remained fever free all weekend in the hospital. On Sunday afternoon, the doctors explained that his white blood cell count had increased from 13.5 on Friday to 20.8 on Saturday without the help of Neupogen (the last dose of which had been given Thursday night), which meant there had been an infection of some sort that caused the fever Friday night. By Sunday his count was back down to a more normal 6.1 (normal is between 4 and 10), which meant the antibiotics had helped fight the infection. All of the cultures remained negative almost 48 hours later, so they decided we could go home Sunday evening as long as we kept a close eye on Collin's temp, and called if the fever returned. So after dinner Sunday, we came home once again.

Today I got the hospital stuff re-organized, straightened up the house a bit, and caught up on laundry-all the things I hadn't quite had the chance to finish before going back to the hospital on Friday night. Tomorrow Collin has another hearing test. Based on the results, Collin's oncologist will decide what the next round of chemo will be.

Saturday, August 21, 2010

Saturday, August 21

Thursday night we didn't get a lot of sleep; Collin was very restless, and for a good part of the night was awake every 15 minutes or so. Then on Friday, he couldn't eat since he needed anesthesia for the MRI, so he was very unhappy all morning. After he wore himself out crying because I couldn't feed him, we both fell asleep for a while before it was time to leave for the hospital.

The MRI was scheduled for 1:00 pm. Luckily things were running on time. I signed the usual consent forms, and then stayed with him until they sedated him. Luckily the sedation was painless for him; since he has the Broviac, they just injected Propofol into it, and he fell asleep instantly. The sight of him suddenly going limp and lifeless looking, and then being carried away, always upsets me.

Two hours later, when the scan was over, they brought me to where he was waking up. He woke up pretty quickly and in a good mood, and happily ate a popsicle. We waited for his oncologist to come down and tell us the results, but she was tied up and Collin ran out of patience. He let us know he was ready to go by screaming and pointing to the door. So we went home and waited for the doctor to call us with the results.

A few hours later, one of the attending oncologists called to let us know the MRI results. He said the MRI looked great. I asked him what that meant, and based on what he described and my understanding of certain terminology, it means:
-The abnormal collection of cerebrospinal fluid that collected under the skin around the incision on the back of his head, called a pseudomeningocele, is much smaller;
-There was an area of blood that had collected in the post surgical bed; the area is smaller now and the blood is being reabsorbed;
-The areas of enhancement, or areas that glowed, on previous MRIs that showed nerve root thickening are glowing less, which means the chemo is working;
-There is no evidence of new tumor growth;
-There are now no visible lesions on the spine.
He said the MRI was looked at and discussed by the pediatric neuroradiologist, Collin's neurosurgeon, and his oncologist, and they were all pleased with the results. The scan isn't perfect yet, but it shows improvement over the last one done in June, and shows we are continuing to head in the right direction. All in all, good news! They had also drawn labs before the MRI, and I was able to get partial results before we left. Collin's white blood cell count had gone from 1.0 on Wednesday to 13.5 on Friday. That meant the Neupogen shots were working, and we didn't have to give them anymore. It also explained why Collin had been so restless and uncomfortable the night before-his bones were achy again since his bone marrow was working hard to make new white blood cells.

Later Friday evening after his bath, Collin's head felt warm, so we took his temperature. It was elevated, so I checked with both of my thermometers. I wanted to make sure it wasn't because of the warm water I had used for his spongebath, and I was so exhausted I felt nauseous, so I asked Bill to wake me in an hour so I could check again, and then I went to sleep. Sure enough, when we checked an hour later, his temperature hadn't changed, so I called and spoke to the doctor on call. He said even though Collin's immune system was boosted, his Broviac had been used for the anesthesia for the MRI, and he didn't feel comfortable having Collin stay home in case he had picked up an infection in the Broviac (any time the line is used, there is the chance that it can become contaminated with something that causes infection, especially if it isn't cleaned properly by the person using the line). So, I packed up the essentials, and Collin and I went back to the hospital at 11:00 pm. We were admitted right next to the room we had just left two days before. Of course by the time we were admitted, Collin had no temp at all (the nurses assured me it happens all the time). The usual cultures and chest X-ray were done to check for infection, and Collin was started back on the two broad-spectrum antibiotics.

All day today, Collin has been fever free, and we spent the day doing our best to keep him entertained. I imagine we will be here anywhere from 36 to 72 hours while we wait to see if the cultures show any specific infection. It is frustrating beyond words to be back so soon, but I know we are where we need to be right now. I just really hope we can go back home very soon!

Thursday, August 19, 2010

Thursday, August 19

We had expected to be discharged from the hospital at the end of the week, but yesterday we were told that since Collin's counts had started to come up, we could go home that day! So he had his OT and PT sessions in the morning, and then a blood transfusion in the afternoon. We were finally ready to leave in the early evening. When I pushed Collin in his stroller to the elevators, he was so excited his whole body shook, and he clapped his hands! It was so nice to be home, but by that time of day we were all exhausted, and Collin was fussy. When I went to give him his bath, he was all sweaty from crying, and his Broviac dressing had become unstuck. So even though it was the last thing I wanted to do last night, I had to do a dressing change; at least it went more smoothly than the last one I had to do at home.

Today I had to get re-organized and back into a routine. I was able to get Collin's medication schedule organized more easily this time, I think just because I have more practice handling things on my own than I did when we were discharged in June. Unfortunately we have to give the Neupogen shots again to boost Collin's blood counts (and by "we" I mean Bill!). When I went to draw up the Neupogen for the injection tonight, I didn't understand the amount the label said to give, so I called the 7 West nurses desk. I asked the nurse who answered the phone my question, and luckily our oncologist was right there, so she got on the phone and clarified for me. It's a good thing I called; as it turns out, it appears there was an error on the label, and we would have ended up giving Collin three times the amount we were supposed to. Collin spent the day being fussy and clingy; I guess just like I have to re-adjust to being home, he does too. Hopefully we'll both feel more settled in a few days.

Collin has an MRI tomorrow to see how things look. Based on the results, his oncologist will decide whether the next round will be mostly outpatient like Round 3 was, or if we will be re-admitted for another 3-4 week stay like the round we just completed. Then she expects that we will begin the final high-dose round with the stem cell rescue on October 11. Hopefully we will be finished and home by Thanksgiving. I remember how in April when we were told about the six rounds of chemo, it felt like it would never end, but our oncologist told us it would go faster than we thought. And it has; I can't believe we're more than half way through.

Looking back over the last few months, it's amazing to see how far Collin has come. He's doing really well, all things considered. But there is a part of me that fears it's too good to be true. I don't know how to live with the constant fear that my baby will be taken from me. Every time I think about the fact that he has cancer, it's like a slap in the face. I still cannot believe it. It takes my breath away.

Tuesday, August 17, 2010

Tuesday, August 17

Sunday, August 15
Sunday was another medically boring day, which is a good thing. When I was feeding Collin his breakfast, I noticed that his last eyelash that had been holding on for days was gone. Bill and Neya spent the day hanging out with us like they did Saturday. We put a gym mat on the floor and covered it with a sheet so that Collin could play on the floor. When it was time for lunch, rather than picking the mat up, we just decided to eat lunch picnic-style on the floor. Afterwards, we played some more. Bill sat and juggled for Collin, and Collin was so excited watching the juggling that his whole body shook. Then Bill gave Collin the balls so he could have a try at juggling. I'm so glad I grabbed my phone to film it, because it makes me laugh every time I watch it!

Monday, August 16
Collin's blood cultures that were taken when he developed his fever have come back negative for any infection. His fever has not returned, so he was taken off one of the broad-spectrum antibiotics today. On Friday he was also taken off the droplet isolation he had been put on due to his sneezing because that culture was also negative for any infection. So, Collin was allowed to go down to the gym for physical therapy as long as he wore a mask in the hallways (since his immune system is still zero). Collin was excited to get out of the room, and tolerated the mask with no problem. His PT had set up some toys on the floor so he could sit and practice some reaching first, but that wasn't what Collin wanted to do, and he yelled at us to let us know it. His PT compromised by outting the toys on a bench that Collin could stand at. Then she did some walking with him, just holding on to his hands. He saw a big rocking chair he wanted to play on, so his PT helped him climb up and rock on it. Then she tried him on some steps to see how he did. At home, Collin has only ever crawled up the steps. His PT held his hands and helped him walk up and down the steps, and Collin didn't want to stop. He didn't practice walking with his walker at all because he just wanted to go up and down the stairs.

Tuesday, August 17
Collin had a very restless night last night, and was fussy all day today. He cried, didn't eat well, didn't want to participate in therapy (which was a first!), and was very difficult to please. He napped this afternoon, and a little while before dinner I asked him if he wanted to go walk in the hall. He seemed very excited, so I put his sneakers and mask on, grabbed his walker and the IV pole, and headed for the hallway. When he realized I meant he was going to walk in the hallway, he had a fit! He wouldn't budge with the walker at all. So, I carried him and pulled the IV pole along as I walked up and down the hall. It was nice to get out of the room for a little while. Then I put Collin in a toy car that can be pushed, and I pushed him up and down the hall (while still dragging the IV pole along with us). He seemed to like it at first, but then decided he was done. He started crying and tore his mask off, so we went back to the room. He proceeded to throw a huge tantrum when I tried to feed him dinner. Later, when Bill and Neya came, Bill wondered if the Neupogen could be causing him discomfort again, just as it did at home. It seems to be the most logical explanation for such a change in his personality.

Since his counts are starting to come back up, it seems we may be able to go home at the end of this week. Fingers crossed!

Saturday, August 14, 2010

Saturday, August 14

Thursday morning, Collin developed a fever, so as per protocol he was immediately started on two broad spectrum antibiotics, and blood was sent to be cultured to try to identify any infection. He wasn't himself all day, and spent the afternoon sleeping on me. Last night, or early this morning really, around 2:30 am, he woke up fussing, and when I tried to get him back to sleep, I found out he was wet, and so was the bed. Evidently, one of the aides had come in and changed his diaper, but didn't get it on very well. So, I had to change the whole bed and get him cleaned up.

As a result of being awake at 2:30 am, plus just not feeling well, Collin slept in Friday morning. It was actually surprising, because he's usually awake around the same time (around 6:30) every morning no matter what his night is like. But Friday morning he slept in, so I tried to catch the staff as they came into the room and asked them to please be quiet as he was still asleep. Of course they obliged, and said they'd come back when he was awake. But then the man who scans the IV and feeding pumps for inventory came in, and before I could shush him, he spoke in his loud, deep voice, and up popped Collin in the bed. As soon as I looked at him I was shocked that his eyes seemed more turned out than I'd seen them in a long time, but it didn't last. I made a mental note to mention it to the ophthalmologist (I had been waiting a few days for him to come see Collin again). Collin seemed like he was in a good mood, and pointed to his breakfast tray. I hoped it meant he was feeling a little better than yesterday. So I changed his diaper and got ready to put him in his highchair to feed him breakfast, and in comes the ophthalmologist...and his resident. And the attending physician...and his resident. And our nurse. Suddenly, all these peple are there to see Collin, and all he wanted to do was eat his breakfast! It was so incredibly frustrating!

The ophthalmologist started looking in Collin's eyes. I told him I feel Collin sees out of his left eye better, and he will turn his head to use that eye. He agreed that the left eye is the stronger eye, and now instead of patching each eye for two hours a day on alternating days, he wants me to patch just the left eye for two to three hours every day. The purpose of patching is to force Collin's brain to continue to pay attention to the weaker eye, to preserve the vision in that eye. Then, in about six months, he will do a surgery on the eyes to help them turn out to a more normal position, and hopefully Collin will be able to see better. Patching the left eye is not fun for two hours, so I can imagine how well three hours will go over. Poor Collin spends that time basically staring at the bridge of his nose, and, rightly so, is very unhappy the whole time the patch is on.

I also spoke to the ophthalmologist about the fact that Collin's right eye is often very red and bloodshot. I am putting in lubricating drops a few times a day, which seems to help with the irritation. But because the right side of Collin's face has no movement, his right eye is open wider than his left eye, and doesn't always close all the way when Collin is asleep. So he checked to make sure there are no scratches on the cornea that would contribute to the irritation; thankfully there were none. So he recommended a lubricating ointment that can be put on the eye when Collin goes to sleep to help moisturize the eye and reduce the irritation. The ophthalmologist said that the sixth and seventh nerves are close together, and would have both been affected by the surgery. The sixth nerve controls eye movement, and the seventh nerve controls facial movement. Over time, as Collin recovers more from the surgery, both nerves may heal at least a bit, but no one knows how long it will take or how much they will heal. It is so hard for me to wait and see. I wish Collin looked more like himself. It's hard to know that when we're out in public, people stare at him because of how he looks. Thankfully he's too young to notice it, but I notice, and one day Neya may notice.

Today Collin seemed to feel better than he had the last two days. He seemed more interested in eating, and overall seemed more like himself. I commented to his doctor that it even seems like the mucositis is better already, and didn't seem nearly as bad as it has been in the past, and she said she has seen that with other kids as well. She thinks it may be because the first few rounds of chemo are done soon after the tumor is removed, and at that point kids are still compromised nutritionally because they've been vomiting and losing weight due to the tumor. By this point in treatment however, they are stronger nutritionally because they have feeding tubes and/or may be eating better on their own. This is cetainly the case with Collin; he is now eating, still gets additional nutrition through his NG tube, and has put on weight.

Bill and Neya came to the hospital after lunch. We spent the day just hanging out and having fun. Neya had Collin finger painting with Crayola Color Wonder Finger Paints, playing catch, playing on the iPad, and playing with toys. We did a lot of laughing, and had a fun and relaxing day together.

Wednesday, August 11, 2010

Wednesday, August 11

My Mom flew home to Houston today, so Bill, Neya, and my Mom stopped by the hospital this morning on their way to the airport. Since Collin walked yesterday using the push toy, I asked them to bring in his walker. The minute he saw my Mom carry it into the room this morning, he was pointing to the door-he wanted to get out into the hallway to walk. I put his sneakers on him, and then since his immune system is back down to zero, I put a mask on him. He resisted the mask since he's never worn one before, but I told him he had to wear the mask if he wanted to go out in the hall to walk. He stopped resisting, so I got the mask tied and out the door we went. He walked from our door to the end of the hall and back a few times-he just wanted to keep going. Even though I could tell he was getting tired, he didn't want to stop. His knees were starting to buckle, and when I picked him up, he wouldn't let go of the walker! We finally got him back into the room to take a break. Luckily his Occupational Therapist came in; he's always happy to see her. He played with the OT and Neya for a while. Then his PT came in, so we went back into the hallway and walked some more. Collin worked very hard on walking this morning, and he never gave up!

Neya lost a tooth Monday night, and on Tuesday morning when I talked to her on the phone, she was so excited that the tooth fairy had come because she wanted to use her money to buy something for Collin. So today she brought her money with her, and went to the gift shop where she picked out a balloon for Collin. It was very sweet, and I was so proud of her. Tonight when Bill and Neya came back to the hospital, Collin had been fussing for a while, but the minute he saw Neya, he sat up, pointed to her, and kept saying, "Hi! Hi! Hi!" He is always very excited to see his sister, and I've told her-only half kidding-that she needs to move in to the hospital with Collin and me! I'm in awe of the bond Collin and Neya have; it's very heartwarming to see!

As I mentioned, Collin's immune system is back down to nothing. He sounds congested at times because the mucositis is starting, and because of the mucus in his throat, he gags easily on food which causes him to throw up what he eats. He has started sneezing, so his nose was swabbed and a culture was sent to see if he has a virus. Because of his sneezing, he is now on droplet isolation as a precaution, which means that the hospital staff now have to wear masks when they come into the room so they don't carry anything from Collin to another patient. This is all on top of the contact isolation that he is always on whenever he comes to the hospital. Since he acquired MRSA when he was in the PICU in April, staff have to wear a gown and gloves when they enter the room, also to prevent them from spreading anything from patient to patient. It will take a few days for the culture to grow if there is a virus, so we won't know until then if he has a cold, some other bug, or nothing.

Tuesday, August 10, 2010

Tuesday, August 10

Chemo Round 4, Day 7

Collin had a pretty good day today. He was allowed to go out of his room as long as we just stayed in the hallway that our room is in since it has the same specially filtered air as the room. So when it was time for physical therapy, he was excited to put his sneakers on and practice walking in the hall. He seemed proud to be out walking and getting attention from the nurses, and I know he enjoyed getting out of the same four walls he's been looking at for the last week. When it was time to come back into the room, he was very unhappy, until he saw his lunch tray come in! This afternoon, Neya and my Mom were here when he woke up from his nap; when he opened his eyes and saw them, he sat right up and was pointing to them and smiling and saying hi-he was very excited to see them! The mucositis is starting; he is starting to sound hoarse and congested. I don't think he's going to feel well over the next few days..

Monday, August 9, 2010

Monday, August 9

I'm a little behind on my updates, so I will try to summarize the last few days....

Friday, August 6 - Chemo Round 4, Day 3
Friday was a fairly quiet day. Collin received Methotrexate, his last dose of chemo for this round, at 4:00 in the morning. He will be given Leucovorin, the vitamin rescue agent, until labs show the Methotrexate level in his blood to be lower than 1.0. Friday morning, he had Physical Therapy and Music Therapy together, which is always fun. We sang, and Collin stood with assistance and reached for different musical instruments.

Saturday, August 7 - Chemo Round 4, Day 4
Collin received a blood transfusion Saturday afternoon. As in the past, he was pre-medicated with Tylenol and Benadryl before the transfusion to prevent any alleric reactions, so he spent a good bit of the afternoon napping because the Benadryl made him sleepy. When Bill and Neya arrived in the early evening to visit, Collin really perked up and enjoyed their visit. Saturday night we were both exhausted, and had the best night's sleep we've had in a very long time!

Sunday, August 8 - Chemo Round 4, Day 5
Collin had a great day Sunday. He was happy and enjoyed playing all day. He also ate pretty well. His Methotrexate level was down to .09 already, so the drug cleared his system pretty quickly. I was thinking about how scared I was the first day of the first round of chemo in May, and how now it's all become so routine.

Monday, August 9 - Chemo Round 4, Day 6Today was a harder day for us. Collin was fussy all day long, and it was very difficult to find much that made him happy. He also received IVIg today. He was premedicated with Tylenol and Benadryl, and the infusion was run very slowly to prevent the life-threatening reaction he experienced the first time he had the drug. His vital signs were taken every fifteen minutes for the first hour of the infusion, and then every hour until the infusion is complete, which should be around midnight tonight. He has had no problems with the infusion today, and I was thinking about how different today was from the first time he received IVIg. I've been watching Collin's last few eyelashes; he's down to one eyelash near the outer corner of his left eye. I know they will grow back, but Collin had long, beautiful eyelashes before starting chemo, and I'm sad that they're gone. Collin got a new hat today that looks very cute on him, and when I showed him his reflection in the mirror when he had the hat on, he smiled. He ate pretty well at dinner, and ate a small cup of chocolate ice cream after dinner-a third of which he fed himself, and all of which he really enjoyed!

Thursday, August 5, 2010

Thursday, August 5

Chemo Round 4, Day 2

Today was a pretty good day. Collin was a bit fussy this morning, I think partly because his left eye was patched for a while, and it's harder for him to see out of the right eye. Despite being fussy, he participated in his therapy sessions; his Speech Therapist did a standardized test of his receptive language today. She had talked to me yesterday about doing the test, and explained that she had no concerns about his receptive skills (nor did I) but that she wanted to do the test so it was officially in his file. So after the test today, she said he scored at 19 months, which is exactly where he should be. Collin continues to try to repeat things I say (when it suits him of course!) Today I tried to get him to say "I love you Neya" while they were playing together this afternoon. He tried a few times, and had the syllables and tone of voice the same way I said it. Then all of a sudden, the next time he tried, he said "Love you Neya" as clear as a bell! Neya, my Mom, Bill's mom and I looked at each other in shock, like none of us were really sure we heard him right! It was great!

Wednesday, August 4, 2010

Wednesday, August 4

Chemo Round 4, Day 1

Thankfully, we were able to get more rest last night. Collin had a good day; although there were a few times he sounded like he was going to throw up this morning, he never did, and he was enthusiastic about breakfast (although he didn't really eat that much). He had fun during his OT and PT sessions; to him (and me) his therapy sessions feel like fun visits with old friends; he is very comfortable with his therapists and is always excited to see them. He seemed excited when the lunch tray came, and he was feeding himself a little bit, but then he was given his 12:00 pm dose of Benadryl (for nausea) and promptly fell asleep in the high chair. I cleaned him up and put him to bed. He slept for a little while, but then woke up screaming; I was not able to calm him down and he screamed at the top of his lungs for about 30 minutes. Finally he just calmed down. I still don't know what the cause was; we wondered whether he had a bad dream or a night terror. It reminded me of the episodes he had when he was going through the Morphine withdrawal; I hope it was an isolated incident! After he calmed down, he sat with me, nursed a little, and we both took a little nap. This evening we did get him out to see the therapy dog for a few minutes, and it was nice to get out of the room. He got upset when we came back to the room and kept pointing to the door, like he was trying to tell me he wanted to leave. He threw up once this evening, but overall seemed to feel pretty good all day.

Tuesday, August 3, 2010

Tuesday, August 3

Chemo Round 4, Day 0

We had an 11:30 appointment at the Clinic yesterday morning, and the plan was that we would be admitted to the 7th floor of the hospital from there. I expected the process to go pretty much like it did July 12 for Round 3; go to the Clinic, see the doctor, have labs drawn, and then go up to the 7th floor soon after. I guess technically that is how it happened yesterday too, but it took a whole lot longer! We were there All. Day. Long. Around 3:00 pm I started asking if they had any idea how much longer we'd have to wait; we were told the bed wasn't ready yet and they didn't know how long it would be. Finally, sometime around 4:30, we were told we could go home, and they'd call us when the bed was ready. I was so irritated that we spent the day sitting in the waiting room, and no one told us we could go home until the bed was ready until after we had been there for five hours! That is a very long time to occupy and entertain a toddler! Poor Collin was exhausted, and didn't have much of a nap the entire day. I had spent the weekend trying to get things done at home, and it would have been nice to spend Monday at home playing with both my kids instead of wasting the time sitting in a waiting room all day. So at 4:30 we left to go home. On the way home I called the Clinic back and asked why at that point we couldn't just stay home and then be directly admitted right up to the floor the next morning; they said we could do that, but they couldn't guarantee they'd be able to hold the bed overnight; if someone needed it overnight, we'd end up being in the same situation Tuesday. So, we ate dinner at home, and then went back to the hospitsl after they called to say the bed was finally ready. By the time we got there, it was around 6:00 pm. Moving in was chaotic; I was trying to get things unpacked and situated in the room so I could function, the nurses were trying to assess Collin and do their admission stuff, Bill was parking our cars after we had gotten all the stuff up to the room, Neya was trying to play on the iPad but was constantly asking questions, my Mom was trying to entertain Collin, and Collin was fussing because he was exhausted. It was crazy and stressful. Next time I will take the last appointment of the day so we don't sit in the waiting room all day long, or I will take an early appointment and then go home until they call to say they're ready for us.

The pre-hydration fluids were hung at 9:00 pm, and had to run at least two hours. Before the chemo could be started, Collin's output had to be checked to make sure his kidneys were functioning properly. The amount of output had to be greater or equal to the amount of input he was receiving. Normally this is not a problem. But since we sat in the Clinic all day, Collin didn't eat or drink normally, so even though he was getting a lot of IV hydration last night, his diapers weren't wet enough for several hours. The fluid was going in, but not enough was coming out; I think he may have been a little dehydrated. Around 3:00 am he was given Lasix (a diuretic), which made him finally go enough that his chemo could be started at 4:00 am. The Cisplatin was run over six hours, until 10:00 am. So Collin didn't have a restful night's sleep last night; between trying to get our stuff situated, the constant activity with trying to get his output where it needed to be, and hearing the door to the med room slam closed every time a nurse went in or out of the room (which is on the other side of our wall), I think I was lucky if I got two hours of sleep last night (not consecutive hours either!) Good times! We've only been here for twenty-four hours, and already my patience is wearing thin. I knew there would be a constant stream of people coming in and out of our room all day and night, and I knew that every time my poor exhausted child would finally relax and get to sleep that someone would be coming in and waking him up. I know he has to be here, but it doesn't make it any easier.

Around 11:30 this morning, Collin started vomiting. I had to change his clothes a few times through out the day because of it. He did take a nap after lunch because he was given Benadryl to help with the vomiting. Luckily, this evening he seemed to feel much better, and ate his dinner (and dessert!) very enthusiastically. Neya was feeding him a chocolate chip cookie dipped in chocolate pudding, and he had as much fun playing with it as he did eating it! Then he had a great time playing with Neya. Now he is sleeping, and I hope he can have a few hours of rest before the next chemo drug is given at four tomorrow morning (the chemo drugs are given 24 hours apart).

Sunday, August 1, 2010

Sunday, August 1

The weekend has flown by, and tomorrow will be here way too soon. I spent the weekend trying to get everything done that I wanted or needed to do before we go back into the hospital tomorrow. Saturday my mom and I took Neya shopping for school clothes; we were successful and I think she's in pretty good shape for school. She has her clothes and her lunchbox; the list of school supplies she'll need hasn't come yet, so Bill will have to take her shopping for those. And maybe some shoes. But at least he doesn't have to worry about clothes shopping. Today my mom and I cleaned up the house, I made sure everything was packed, we ran some other errands, and I got my hair cut so I don't have to worry about it for a while. I also bought a folding high chair to take to the hospital. There's no guarantee that they'll have one available to use, if they do they aren't the cleanest things around, and they don't fold, so they are constantly in the way. I got an inexpensive one, but it will take up less room, and it should be more comfortable for Collin to use since it has the cushioned seat cover that comes with it (the hospital ones don't). I think it will get a lot of use over the next few months!

Collin has been a great eater this weekend. Last night he woke up fussing, and I wondered if the tube feed was too much on top of what he had eaten for dinner, so I put it on hold for a bit, but then never woke up to put it back on. Today he ate more like he used to before he got sick, so I think tonight I'm going to cut the feed in half again and see how he does with it.

Well, I'm going to try to get a good night's sleep in my own bed; it'll be the last time I'll be able to for a while! :-(