Monday, May 31

Collin had kind of a restless night last night. He had a few episodes of vomiting in the beginning of the evening, and he moved around his bed a lot during his sleep. A few times I woke up to his fussing to find his feeding tube and IV lines wrapped all around him; once the feeding tube was even around his neck. This morning he was agitated and seemed uncomfortable, and his face and hands were very puffy. His hemoglobin had dropped over night, so he needed a blood transfusion this morning. When the stem cells were collected yesterday, they also collected some plasma, which has protein in it. By removing a lot of protein from his blood, it caused other fluid from blood cells to leak out into what is called the third space, or an area it wouldn't normally be. The blood transfusion helped Collin feel better, regain some energy and color, and reduce the puffiness.

Collin's hair has been falling out, and it gets all over him and his bed. It seemed like it would be pretty itchy to lay in, and I want him to be as comfortable as possible, so we decided to give Collin a buzz cut today. I sat him in his bed and held him up while the nurse used clippers to shave his head, and Bill filmed the whole procedure. I knew he would lose his hair, and I know it will grow back, but never in a million years would I have pictured his first full haircut this way. I cried the whole time, and we collected his hair afterwards and put it in a bag. Now that it's done though, I think he looks pretty cute.

Collin wore his eye patch this afternoon for the second time. Unfortunately he didn't take it as well as he did the day before yesterday; today he cried and fussed for pretty much the whole two hours. It was very frustrating and sad, both for him to experience, and us to watch. I just kept telling myself that it has to be done if we want to help preserve the sight in his right eye.

This afternoon Neya and my mom came in. Collin was laying in his bed, and Neya started playing with him. They were throwing the ball back and forth, and Collin was laughing a lot. He also seemed to be making more attempts at talking the way he used to at home; it's more sounds and gestures than actual words really, but it's nice to see another part of him coming back. It was so nice to see the two of them having so much fun together; they really miss each other. I can't wait until this is all behind us and they can play together at home like they always did.

Sunday, May 30

Today got off to a busy start. As predicted, Collin's stem cell collection took place this morning. After rearranging some furniture and the IV pole to make room for the necessary equipment in our small room, a large apheresis machine was brought into the room. The special tubing was connected to Collin's Broviac catheter; one tube took the blood from Collin into the apheresis machine, where a centrifuge spun it into the different blood components. The stem cells and some plasma were taken out of his blood, and then the parts of the blood that weren't used were put back into his body through the other tube in the Broviac. Collin had been given some Tylenol and Benadryl prior to the collection to prevent any adverse reactions, and ended up sleeping through the three hour procedure. The stem cells then had to be counted in the lab to make sure enough of them were collected; if not, the whole procedure would need to be repeated tomorrow. The goal was to collect 10 million stem cells; we got word this afternoon that they collected 80 million! Those stem cells and the plasma will be mixed with albumen to increase the volume, and then it will all be frozen until Collin needs it to rescue his body from the final, mega-high dose of chemo.

Since it is the weekend, the rest of the day was kind of quiet. I climbed into Collin's bed for a short time this afternoon and dozed with him. Early this evening Neya and my Mom came in so we could all eat dinner together (Bill was already here). I hadn't seen Neya since Tuesday because she had been sick, so we didn't let her visit until today. Collin gave Neya lots of high-fives, and he played with one of her Beanie Babies that she had brought with her. She said that since he enjoyed playing with it so much, she would leave it here at the hospital for a few days for him. It was really sweet of her. She said the most important thing was her baby boy. Collin did a lot of smiling, laughing, and high-fiveing this evening. It seems that he wants to sit up more, so I had him sitting on my lap. He wanted to nurse, but he doesn't yet have the coordination/control over his facial features that he needs to do so successfully; so instead we fed him pumped breast milk on a spoon. He didn't have any difficulties swallowing, and seemed to really enjoy it. Neya even got to help feed the milk to Collin, and she did a great job! Then Collin was tired out, so I cuddled with him until he fell asleep, holding my hand in his little hands. Those loving, quiet, peaceful little moments are priceless!

Saturday, May 29

Today was a quiet day. The first round of chemo is over, the mucositis is gone, and Collin's counts are coming back up quickly with the help of Neupogen. Collin had another high dose injection of Neupogen this evening, and his oncologist feels positive that his white blood cell count will be high enough to do the stem cell collection tomorrow morning. With his counts rising, talk of discharge to home before the next, less intense, round of chemo has come up; however Collin's oncologist is considering repeating this first round of chemo right away since he has responded so well. Apparently the Head Start III chemo protocol which was the original plan for Collin's treatment has had more children come through treatment with fewer long term side effects such as hearing loss, etc., but overall has a slightly lower survival rate than the Head Start II protocol which used more cycles of high dose chemotherapy with a slightly higher rate of long term side effects. Since Collin is too young to undergo radiation without suffering catastrophic losses in development and overall quality of life, his oncologist wants to give him the best possible chance at survival. I figure at least he can LIVE with some hearing loss; we can deal with that, and whatever other side effects we may have to contend with. The important thing is that he'll be alive. So if his oncologist feels the best thing is to repeat this first round of chemo instead of doing one of the less-intense rounds, then I'm OK with it. Seeing him continue to improve will get me through anything.

Today was the first day Collin wore the patch over his left eye. Overall it went well; he didn't seem to bother with it too much. I did my best to keep him occupied so he didn't fall asleep during the two hours, which would defeat the purpose. I hope he continues to tolerate it as well as he did today. I also got him to laugh and smile a few times today; I think the small change in his face when he smiles is becoming more noticeable.

Friday, May 28

Chemo Round 1, Day 14

Today the hospital's pediatric ophthalmologist came to see Collin. As a result of the brain surgery, Collin's eyes don't line up in the same direction, which is called strabismus. In children, when the two eyes can't focus on the same image, the brain will learn to ignore the input from one eye; if that is allowed to continue, the eye the brain ignores will never see well. The loss of vision in the weaker eye is called amblyopia. After the age of five, when the brain stops growing, the condition becomes permanent. Collin's condition may improve some over time as inflammation in his brain continues to improve. However, to prevent his brain from ignoring the weaker eye, the ophthalmologist is going to have a patch put over Collin's stronger eye for two hours a day so his brain is forced to recognize the input from his right eye, thereby hopefully preventing vision loss in that eye. Then at some future point, if the strabismus doesn't improve as the inflammation in the brain decreases, Collin will need surgery to correct the turning in of the right eye. It will be interesting to see how Collin tolerates a patch over his eye; it's too bad he's not old enough to be interested in playing pirate!

The new stroller I ordered for Collin came yesterday, so my Mom assembled it and brought it in to the hospital. Today Collin's physical therapist evaluated the fit; it works beautifully and supports him well. He seems very comfortable, and we didn't have to make any major adjustments to it. We will use it here in the hospital to get him out of his room when he's allowed; I look forward to taking him to the playroom, and taking him to see the therapy dogs when they come in (the dogs are not allowed not the hem/onc wing because it has it's own filtration system to keep the air clean). It would even be nice to get him outside for a bit when he'd be allowed. Then during the times he's discharged from the hospital and we are coming in to the clinic for outpatient chemo, it will make life a lot easier.

The morning was busy for Collin. I gave him a bed bath, and then the dressing over his Broviac needed to be changed again so the nurse could culture the area that was red, to see if it's infected. The ophthalmology resident had come to see Collin in the morning and put dilating drops in his eyes in preparation for the attending ophthalmologist to see him in the afternoon. Then we tried him in his new stroller. By the end of all the activity, Collin looked exhausted, but he didn't seem to want, or be able, to fall asleep. So after lunch when the speech therapist came, he was very tired and not so interested in tasting things today. He did accept a little milk from the spoon again, but wanted no part of tasting applesauce. So I put him back in bed, and after a while, he finally fell asleep, still clutching the spoon in his hand.

This evening he had his final chemo drug in this first round of chemo, another dose of Vincristine. He also got a higher dose of Neupogen, which is the drug that is stimulating his bone marrow to make more white blood cells. The higher dose had to be given as an injection in the fatty tissue in his thigh, but a numbing cream was applied first, and thankfully he hardly seemed to feel the shot. His blood counts are on their way back up with the help of the Neupogen, and as he makes more white blood cells, his body also makes more stem cells. In a few days, when his counts are high enough, the stem cells are going to be collected from his blood, and then frozen and stored for the autologous stem cell rescue at the end of all of his chemo. In the final round of chemo, Collin will be given higher doses of chemo than an adult would receive in a year, and then his own stem cells will be put back into his body to rescue his body and save his life. By using his own stem cells there is a much lower chance of rejection. The stem cell collection is tentatively scheduled for Sunday morning. It will be done here in his room, and will take a few hours. Once the cells are collected, they will be counted to see if there are enough; if not, the procedure will be repeated once or twice over the next few days.

Tonight after his respiratory therapy was done, I told Collin what a good job he had done as I clapped my hands for him. He clapped his hands and gave me a few high-fives. Then I was tickling his belly button, and he laughed. He still doesn't have facial expression, so when he laughs it doesn't look like he's laughing; it's more like a deep belly laugh.

Thursday, May 27

Chemo Round 1, Day 13

Collin had a nice quiet night last night; we both slept well. He has had no more vomiting since his tube feed was turned off and his anti-emetics were increased. The break has been really nice (for both of us)!

This morning physical therapy and music therapy came together to work with Collin. We sat on the floor mat, and Collin sat on my lap. He did a great job holding his head up, and he played with the toy dinosaurs and the ball again. We got him to try to kick the ball once using his weaker leg. Then the music therapist played the guitar and sang. Collin seemed to enjoy it, and he played with one or two little instruments himself. He tired quickly though, so I put him back into bed and he took a nap. After lunch I knew that the speech therapist and occupational therapist would be in to see him, but I didn't think he'd have a whole lot of energy based on how he had been in the morning. However, I was reminded again that you just never know how things will turn out, or when you might witness something quite miraculous.

The speech therapist came in to see if Collin was up to a session with her. She wanted to try offering him some tastes of apple juice on a spoon. I told her how he had wanted to nurse last night for a few minutes, and asked her if we could try some pumped milk on the spoon first. Then I asked Collin, who was laying in bed, if he wanted to sit up and have some milk. He reached his arm up to me, so I sat him up on the bed and held him in a sitting position. The speech therapist poured a little milk onto the spoon, and this time, instead of Collin fussing and resisting, he opened his mouth! So she carefully trickled the milk into his mouth, and then offered him another taste. He opened his mouth again! I thought things couldn't get any better-I was amazed (as was the speech therapist I think!) and overjoyed. When the little bit of milk was gone, the therapist spooned some of the juice out of a little bowl of diced peaches, and Collin again opened his mouth for a taste. He seemed to enjoy the peach juice too. Then the speech therapist offered him a taste of yogurt. Yet again Collin opened his mouth, and leaned forward for a few tastes. Then, he tried holding the spoon and feeding himself, which he had only done one other time at home!! We were all amazed! The occupational therapist gave me my iPhone so I could try to take a video of Collin having his second "first bites" of food, but when Collin saw the phone, he took it with both hands and wanted to watch his favorite videos. Then when he put the phone down, he started touching my face with his hand, and before I knew it, he was taking my glasses off my face...and laughing!! We were all laughing with him-it was truly amazing, and I don't ever want to forget the joy I felt at seeing him do such seemingly simple things!

This evening I sat Collin up in his bed and offered him a few bites of melted chocolate ice cream. He had a chocolate mustache, and thoroughly enjoyed the ice cream until his foot ended up in it. He even took the spoon and tried feeding himself again. Then I held him in the rocking chair, and he nursed for a few minutes. Then we just cuddled and rocked for a while. He was very tired tonight, but thanks to the Benadryl that helps with his nausea, he is sleeping peacefully. What a great day!

Wednesday, May 26

Chemo Round 1, Day 12

Collin had a few more episodes of vomiting last night and early this morning, so to give his stomach a break, his tube feeding was put on hold. There are many possible reasons for the vomiting, but the frequency seemed to increase over the last two days as the amount of his tube feed was increased, so if the vomiting slows down when the tube feed is on hold, there may be a correlation between the two. His Benadryl and Reglan (being used as anti-emetics, to prevent vomiting) doses were also increased, which may help as well. Around ten this morning, he was also given a low dose of Ativan to help with the nausea. He seemed sleepier during the day today, which may have been due to the Ativan. It was nice for him to have a break from the vomiting, and to see him get some rest. But I like to know the causes of things, and there are too many possible causes for the vomiting to be able to figure out, which is frustrating to me. It also seems like it would be more difficult to pinpoint a cause when multiple changes are made together. So, I'll just be happy that he had a rest from throwing up, and that I got a rest from standing at the ready with the suction, and then cleaning him up multiple times during the day.

Collin's PT had him out of bed for a short time this morning. Since he was so sleepy, she kept the session lighter, and showed me some massage techniques, which Collin seemed to enjoy. This afternoon, Collin's OT brought in some Go Fish cards, and he was happy to take them from her one by one, look at them, and then give them back to her or share them with me. For the most part, he doesn't fuss during therapies anymore; I think he is getting used to familiar faces, and has figured out that therapy time means play time. Since he was so drowsy, ST will stop by tomorrow to see if she can work with him when he is more alert.

This evening I took Collin out of bed for his daily weight, and after that I sat in the rocker and held him for a few minutes. He wanted to try to nurse, so we tried again to see how it would go. He managed to nurse for about five minutes. Unfortunately about two minutes after he was done, he coughed up mucus and the milk, but it was nice to see that he still wanted to try, because it's the only kind of oral feeding he is willing to do. When I put him back in bed, I noticed the area around his Broviac site is very inflamed. He is on two broad spectrum antibiotics due to some occasional low fevers, but I still worry about him getting an infection. If blood cultures come back showing any particular kind of infection, a more specific antibiotic can be added. I'm praying he doesn't develop an infection.

Tuesday, May 25

Chemo Round 1, Day 11

There were a few quiet hours of sleep last night. Collin fussed around four this morning, so I changed him; then he threw up some more so I held his hand and suctioned his mouth every time he vomited, as is my usual practice. Then I cleaned him up and put clean pads underneath him. I sat and held his hand until he went back to sleep, and then I went back to sleep too. When I woke up at seven, Collin's nurse told me that his platelet count was pretty low, so he would be receiving platelets; the doctor said that with Collin they don't want to risk any bleeding in his head, so they didn't want to wait until his platelet count went any lower. Luckily he had no reactions to the transfusion. His hemoglobin count was down again too, so he would need another transfusion of red blood cells either today or tomorrow. As the day went on and Collin seemed more tired, the decision was made to do the transfusion today, so he is receiving it as I type this blog entry. There was more vomiting today, and the frequency seemed to increase a little, so the tube feed increase was paused to make sure that the increased volume of feed isn't contributing to the vomiting. This afternoon Collin had another fever, so the Vancomycin was restarted. Yesterday the sterile dressing over his Broviac port was changed because it looked pretty bad due to the vomiting. Today it had to be changed again because it had again been...dirtied, only this time it looked like there was some moisture under it. Normally the dressing is only changed once a week, because every time it is opened, there is a risk for infection. Now I'm trying to keep a disposable pad over Collin's chest to try to better protect the dressing; the strategy works as long as Collin will leave the pad on his chest.

Collin's physical therapist brought him some Fisher Price Little People dinosaurs to play with today. He enjoyed holding them and looking at them for a little while. She had asked to see our stroller, so I had Bill email pictures of the large stroller and the umbrella stroller we have. Both strollers lack the support Collin needs since he is unable to sit up on his own, so we looked at some different strollers and ordered one that looks like it will offer more of the support he needs. Collin's occupational therapist got him to clap his hands once today, and Collin waved to Bill and gave him a high-five tonight before Bill left to go home. A few times today I saw a very subtle change in Collin's face that made me think he was trying to smile, and once or twice he opened his mouth and tried to say something.

Monday, May 24

Chemo Round 1, Day 10

Today was another quiet day. Collin was taken off the oxygen he had been on since the reaction to the IVIG on Friday. He hadn't bothered with the nasal canula until this morning when he kept pulling it out of his nose, so I'm sure he was happy to have one tube taken off his face. The Vancomycin, one of the two antibiotics that were started early Saturday night due to the fever, was stopped; blood tests showed that it had not yet reached therapeutic levels, but his fever had gone down anyway. The tube feeding that was restarted after the high doses of chemo were complete is slowly being increased; the goal is to increase the tube feed to the normal level and then stop the TPN (the IV nutrition boost) as prolonged TPN use is not good for the liver. The physical therapist let Collin rest today since he spent the morning throwing up.

Sunday, May 23

Chemo Round 1, Day 9

Last night was a very quiet, uneventful night, and Collin and I both got some good sleep. Today was a quiet day, or as it's called in the world of chemo, boring. Boring days are good days. Collin had occasional episodes of vomiting, but had a lot of rest as well.

He enjoyed playing for a little while; he threw the ball to his sister, enjoyed petting and squeezing a small stuffed dog, and watching some of his favorite music videos on the iPhone again. And again, it looked like he tried to make a bark during his favorite Wishbone video. He seems peaceful and pain free, which is a great thing to see! Tomorrow is Monday, so it will be a busy day!

Saturday, May 22

Chemo Round 1, Day 8

Today marks one month since Collin was admitted to the PICU following that first MRI. It's so hard to believe; the time has flown! At least it has stopped feeling like one long, never ending day. And at least now I am less afraid that any sign of something not being quite right is related to hydrocephalus; I see pieces of him coming back every day, and due to changes in his behavior, I really feel the chemo is working and getting rid of what shouldn't be there in the first place. At one point I questioned why we were putting him through all of this; but I know there was no choice, and it's the right thing to do. And I feel more confident that it's working every day. That is what will help get me through the rough times still to come.

Last night, I began to realize that his reaction to the IVIG yesterday was very serious, life threatening. On some level I knew it at the time, but I kept myself in denial. It was very hard to go to sleep last night. I stayed awake as long as I possibly could, but when I physically couldn't keep my eyes open anymore, I gave in to sleep. This morning when I woke up, I learned that he had a temp over night (at it's highest it was 102), despite being on Tylenol because of yesterday's event. The care team followed protocol and did blood work to see what his white blood cell count was; it came back as 0.1 (normal is between 6 and 17), so they immediately put him on two broad spectrum heavy duty antibiotics. I knew this was coming, but it still terrifies me. The worst can happen during this nadir, the time when his immune system is non-existant, but that's why we stay in the hospital. His temp is taken every four hours, and at the first sign of a fever, which in someone with no white blood cell count is the only sign of life-threatening infection, he is treated aggressively with antibiotics. I've been told the first round of chemo is the hardest because you don't know what to expect. It's scary to think about, and it's hard to see your child so sick. Collin has had many episodes of vomiting today due to the mucositis. His poor little body works and heaves and wretches to throw up stomach bile and mucus, and then he is so worn out he falls asleep. But thankfully he doesn't seem to be in any pain. The continuous morphine drip seems to be a good thing. And he had moments today where he was alert and interactive, despite being exhausted and not feeling well. He threw a ball to his nurse and Bill and I. He again played with the syringe the nurse gave him the other day. He looked at the pictures and turned the pages of a board book as I held it for him today. And he held on to the iPhone with both hands and ENJOYED his favorite music videos, and even tried to open his mouth and make the barking noise he always made at home when he watched the Wishbone intro. Every day we get another piece of Collin back, and the joy I feel cannot be described!

Friday, May 21

Chemo Round 1, Day 7

This morning after I got myself ready for the day, I turned around from the sink and found Collin had turned himself onto his belly in the bed, and was holding his head up looking around. I got him changed and cleaned up, and a little while later his nurse came in to give him some medication. He turned his head to the right (which his physical therapist has been trying to get him to do) to see her, and then he waved to her. Then he watched as she used syringes to put the meds into his feeding tube. He tried to grab one of the syringes, so she gave him a clean one to play with. Early this afternoon the speech therapist came to work with him again. We sat him in the Cuddle Bug chair, and she put a little cold water in his mouth, and then tried a little bit of orange sherbet. He resisted while she tried putting the spoon into the front of his mouth, but then seemed to enjoy the little tastes he was getting. As the speech therapist was finishing up, the music therapist came in. Last week when she saw Collin, he tolerated soft guitar music and humming, but became agitated with singing. Today however, as she hit the second chord on the guitar, he calmed right down, and just sat happily and listened. He enjoy the guitar, the humming, and the singing. As he was listening, I took a small maraca and shook it gently, and then offered it to Collin. He took it and shook it! We passed it back and forth and took turns shaking it. Then I gave him another instrument with a bell in it, and he enjoyed that one too. When he started to look like he was getting tired, I put him back in bed, and he listened to a cd of soft guitar music as he went to sleep. Later the occupational therapist came to work with Collin. He enjoyed tossing the ball, and then we sat him up and looked at the V-tech talking book again. He tolerated the activity very well, and when he became tired, we let him rest. Earlier this evening, we watched him take off his left sock and play with it using both hands.

Collin's latest Methotrexate level was .09, which means most of the drug is out of his system. He has started having more side effects from the various chemo drugs. Chemo kills all the fast growing cells in the body, whether they are good or bad. All of the cells in the lining of his mouth, esophagus, and GI system are being killed off, and as that happens, there are mouth sores and a lot of mucous that the body has to get rid of, either by vomiting or diarrhea. It seems his mouth is looking red inside, and he did have a few episodes of vomiting mucus this morning. Hopefully the continous morphine drip that he is now on will help with the pain from the mucositis. Today he was given a drug called IVIG, or intra venous immunoglobulin. It is a plasma product made of antibodies and is used to boost the immune system. Collin seemed to be resting comfortably in bed, but then he suddenly started to have an allergic reaction to the IVIG. His blood oxygen levels dropped, so the respiratory therapist was called. Then he started to shiver, and almost looked like he was having a seizure. His blood pressure and heart rate were high. Suddenly his nurse, nurse practitioner, heme/onc fellow, and attending physician were in his room giving him other medications to counteract the allergic reaction. In the end he was fine, but the experience was very frightening. The drug was stopped for a while, and then was re-started at a very slow rate after a steroid and antihistamine were given. He seems to be tolerating the rest of the infusion well now, but his care team is ready to handle another reaction if necessary. Collin is again resting comfortably in bed, with the help of morphine and the Benadryl given to counteract the IVIG response. He also received a second dose of the chemo drug Vincristine, which he received last Friday as well. He will have one more dose of it next Friday. His tube feedings have been re-started, and so has his TPN (IV nutrition).

Thursday, May 20

Chemo Round 1, Day 6

Around 4:00 this morning, I heard Collin, so I got up to see if he needed anything. The nurse had come in to give him some medicine, and she told me that every time she had checked on him he was in a different position. He had been moving around the bed all by himself. When she was done, we changed his diaper, and then I moved him over, climbed in next to him, and cuddled him until we both fell back to sleep (which didn't take long!). A few hours later, the respiratory therapist came in. I told Collin that the man was here to give him his breathing treatment but that it wouldn't hurt. Collin relaxed, and cooperated with no fuss. When the respiratory therapist was leaving, he said goodbye, and I waved and said goodbye. Then Collin picked up his hand and waved too! It was the first time since his surgery that he waved, and it made my day to see more of Collin's personality coming out! Later in the morning he wasn't as willing to participate in physical therapy as he was yesterday, but he certainly had a temper and is still very strong. Then the speech therapist came in to try to see if he'd be interested in tasting anything by mouth. He fussed the whole time, but he did take a few tastes of apple juice from the spoon, and it almost seemed like he enjoyed them but didn't want us to know he enjoyed them. The speech therapist will visit him again tomorrow to see how things go.

My mom flew in from Houston last night for another three weeks. She came to the hospital this morning and said she thought Collin looked a lot better than when she left a week and a half ago. When she left the hospital after lunch, she and I stood by Collin's bed, and she told him she was going to leave but that she'd be back tomorrow. When she said goodbye and waved, he waved back at her...three times! We both stood there laughing and crying at the same time! I also saw a change in Collin's face a few times today; it was ever so slight, but it made me think he was trying to smile. As I was laying next to him this afternoon, he was holding on to my nose, and I asked him if he was being silly, and it sounded like he was trying to laugh. This evening he turned his head and waved at the nurse when she came in, and he gave the respiratory therapist a high five when he was done with his Albuterol treatment!

Collin's blood levels for the Methotrexate have dropped very quickly; this afternoon the number was already down to .13. That means the drug is clearing his system very quickly, which is good. The oncologist stopped in today, and said that kids often get a rash during the first round of chemo. It can last up to ten days. She also expects the mucositis (mouth sores) to start tomorrow, as it usually starts a week after beginning chemo. Over the last few days it seems as if Collin's pain hasn't been as well controlled as it had been. He could be having more pain as side effects from the chemo such as jaw pain, leg pain, mucositis, etc. start to occur. Since he was needing extra doses of morphine, he was started on a continuous morphine drip to keep him as comfortable as possible during the next few weeks.

Wednesday, May 19

Chemo Round 1, Day 5

Overall, today was a good day. It did have it's share of frustration; for a lot of the day it seemed no matter what I did for Collin-trying to keep him comfortable, warm, etc.-it just agitated him. He would kick me or push me, and scream and cry; it's difficult to see him like that because he was never like that at home. But I know we're not at home, and nothing is normal, and he doesn't feel well, and he can't express himself any other way. But there were lots of little victories too. During PT today, the physical therapist had Collin sitting on her lap on the floor mat and offered him some different toys. I held a ball out to him, and he picked it up with his left arm (the stronger arm) and threw it to me multiple times. He held a pinwheel in his right hand, and then transferred it to his left hand. I built a small tower of stacking cups, and when he was ready to, he knocked it over just like he loved to do at home. Then the physical therapist laid him on his left side and asked him to roll over; she wanted to see him used his stronger side. Collin fussed a bit, but then he got mad enough and instead of rolling onto his back, which would have been easier, he rolled onto his stomach and then partially onto his right side. We were amazed! A little while later, he was laying in the bed, and rolled over again, and I was so disappointed that no one was around to see it! Later, the occupational therapist brought a V- tech book in. So I sat with Collin on my lap, and the occupational therapist held the book in front of him and talked about what was on each page. Then she asked Collin if he could help her turn the page. He fussed at first, and she told him it was alright and he didn't have to do it if he didn't want to; then all of a sudden he reached out and grabbed a page. Seeing it brought tears of joy to my eyes, and I felt more hopeful by the end of the day.

I noticed a rash all over Collin, so now we are monitoring that. Of course, it could be from any number of things: medication, chemo, his blood transfusion, etc. He had a few episodes of vomiting, and during one of them I saw his feeding tube push out of his nose a little bit. It's possible that the force of vomiting can push the tube up from the jejunum into the belly, making it an NG tube; it's also possible that if the tube had moved, it could cause him to vomit. So, the nurse had another X-Ray done to make sure the tube was still where it was supposed to be; luckily it was.

Tuesday, May 18

Chemo Round 1, Day 4

Collin turned seventeen months old today. The day was pretty quiet for the most part, especially compared to yesterday; Mondays are very busy as everyone who hasn't been in over the weekend stops by. This morning when I got his lab numbers, his Hemoglobin was 6.9, which meant he was anemic. When it falls below 8, a blood transfusion is needed, so he had one this afternoon. Because of the transfusion, PT and OT said they would come see him tomorrow instead of getting him worked up today. As the physical therapist left, I said to Collin, "Tomorrow you can get out of bed and work on the floor mat like you did yesterday." He started crying right away, which was an appropriate response, as he doesn't like physical therapy. This morning during his breathing treatment, he held his breath, and the respiratory therapist remarked, "So you've learned all the tricks!" He's definitely able to voice his displeasure when he has to do something he doesn't like! Last weekend, it seemed like his pain was well controlled and he was comfortable, but in the last 24 hours there have been times when I've questioned if he's hurting. It's possible that he could be having some chemo side effects like jaw pain and leg pain, but it's hard to tell since he can't tell us what he's feeling. We're keeping track of when it seems like he needs something more for pain, and will decide if he needs a higher dose of morphine, or even a continuous drip; he may be put on a continuous drip when the mouth sores start, if not before.

Today Collin received the vitamin rescue agent for the Methotrexate, called Leucovorin; it rescues the body from the ongoing effects of the Methotrexate. It was started 24 hours after the Methotrexate was started, and he will get it every six hours until blood work drawn every eight hours shows that the Methotrexate is out of his system.

Monday, May 17

Chemo Round 1, Day 3

The neurosurgeon checked in with us this morning, and I asked him about Collin's eyes turning in. Since all of the recent scans and other tests show no increase in cranial pressure, he feels the cause is most likely inflammation of the sixth nerve, which should decrease over time. Collin had physical and occupational therapy again. Physical therapy is challenging for him, and he spends the whole session crying; while it is hard to see him go through it, I know how important it is, so I swallow my tears and cheer him on. He tolerated OT very well today, with very little fussing. 

I became very annoyed at the respiratory therapist who came this morning to give Collin his breathing treatment. I was washing my hands when she came in the room, and I told her I'd be done in a minute and would get out the inhaler for her. She saw where it was and got it out herself, and after taking a quick listen to him with a stethoscope, she just put the mask over his face and gave him his puffs. Collin was laying in his bed facing the wall, so he couldn't see who was there. He got very upset and fought the treatment. He probably would have done so no matter what, but I like to tell him who is going to be doing what to him so he knows what to expect. I figured this therapist wouldn't walk in to a five year old's room and not tell them what to expect, so it really angered me that she would treat Collin that way, and I told her next time I would appreciate her letting me tell him what she was going to do before she touched him. Tonight a different respiratory therapist came to do his treatment, and I explained who was there and what they would do. He fought the breathing treatment a whole lot less.

The oncologist had talked about putting me in touch with a family who had been through chemo and was on the other side of things now. Today a family that she had in mind came into the outpatient clinic, so I got the chance to meet them. The little girl was diagnosed at the age of four months; she's now fourteen months, and healthy, with very few long term side effects from the chemo. Her hair (and eyelashes!) are growing back, and the scars from her tumor removal, shunt placement, and Broviac catheter are hardly noticeable. Her mother told me that the first round of chemo is the hardest, but not to lose hope because it will get better.

Today's chemo drug was a very high dose of Methotrexate given via IV over four hours. The common side effects of the Methotrexate include mouth sores, nausea, vomiting, loss of appetite, and abnormal liver function tests. The kidneys are watched very closely, and urine is checked for acidity and presence of blood. Twenty four hours after the Methotrexate is given, a vitamin rescue called Leucovorin is given to stop the ongoing effects of the drug. Then blood tests will tell if the Methotrexate is gone from Collin's system.  

The oncologist stopped in tonight and was very pleased with how Collin looked and how he had tolerated the chemo so far, but she still warned that the hardest part is still to come. Later this evening Collin's pediatrician stopped by, and spent about an hour visiting with us. He was very pleased to see how Colin looked now compared to two weeks ago when he saw him in the PICU. Despite my little frustrations through the day, today left me feeling positive and hopeful.

Sunday, May 16

Chemo Round 1, Day 2

Today was pretty quiet. The room we were in was the smallest on the hall, so our nurse decided to move us to a slightly larger room. Collin had the same chemo as yesterday, and tolerated everything well. When she heard that the sodium chloride makes Collin vomit, his night nurse tried diluting it with a little of the formula normally given through his feeding tube, and then splitting it into two doses given a half hour apart. It worked! She made a note in his chart so that everyone will know to give it the same way.

When Bill and Neya came in for their nightly visit/dinner date with me, Collin was much more alert. We watched him stick his left leg in the air and use is left hand to play with the blood pressure cuff that was around his shin. It was nice to see him alert, comfortable, and having purposeful movements on his own. I told Neya how important it would be for her to tell Bill or me if she felt like she was the slightest bit sick, and she asked why she'd want to tell us if it meant we wouldn't let her come to see Collin. I realized she had to understand how serious the situation is, so I explained that the chemo drugs will make Collin so sick that the slightest infection would be very very serious. She said, "You mean he could die?!" and I told her I didn't want to scare her, but yes. I told her I'd rather her not come in for a few days than to have something horrible happen, and she agreed. No six year old should have to face such a possibility, and it hurt not to be able to sugar coat it.

Saturday, May 15

Chemo Round 1, Day 1

Collin seems to have tolerated yesterday's chemo very well; his sodium levels are up (higher sodium means less swelling in the brain) and his input and output is right where it should be. His pain is being managed better, and it is a relief to see him comfortable. On the weekend there are no visits from therapists, and there is less hustle and bustle, so the day was fairly calm.

Chemo was started at 4:30 PM again; for the most part the timing is dependent on when the very first dose is given, and then chemo is given every 24 hours. The first chemo drug today was called Etoposide (VP 16). This drug has a preservative in it that can cause blood pressure to bottom out, so for the two hours over which the drug was given, Collin's BP was automatically taken every fifteen minutes. Luckily he had no problems. The second chemo drug today was called Cytoxan, which was administered over one hour. It also has side effects of nausea, vomiting, loss of appetite, hair loss, and low blood counts. It can be very toxic to the kidneys, and so it is administered with a rescue agent called Mesna, which is given as a continuous infusion over twenty four hours. To put it in perspective, the nurse told me that the other kid getting the same dose of Cytoxan is fifteen...years...old! Luckily Collin seemed to tolerate today's drugs well, without any complications. He will have the exact same drugs tomorrow. His sodium dropped slightly, so he was given sodium chloride to bring his level back up. Unfortunately the sodium makes him vomit almost instantly.

Friday, May 14

Chemo Round 1, Day 0

The neurosurgeon came by and said that based on the results from the LP and the last few CT scans, he's 95% sure that Collin won't need a shunt. He will continue to monitor him, and warned that there will be times in the future where he will be having some of the symptoms of hydrocephalus because of the cancer; we will all be watching him closely and he can have more scans if necessary to see how things look. At this point, the neurological symptoms that Collin has are due to the cancer cells still in his brain, and the only way to treat him is to begin the chemo. At the end of our conversation, the neurosurgeon mentioned that he had another kid who had been diagnosed with a brain tumor the night before, and my heart went out to the family when I thought about what they were going through.

Collin had a few episodes of vomiting throughout the day, and one of the nurses mentioned that she wondered if it was possible that his NJ tube had moved and become an NG tube. I mentioned it to the oncology nurse practitioner, so she ordered an X-Ray to make sure that the feeding tube was still in the right position. Luckily the X-Ray showed it was. The urinalysis results from yesterday also showed that there was no UTI as a result of the catheter after the bone scan.

The physical therapist had brought up a combination between a stroller and a wheelchair, called a CuddleBug, yesterday. It fit Collin perfectly, and he seemed comfortable in it. He easily tolerated sitting up in it for about fifteen minutes today. Later I put him in it again when the speech therapist came to see him. She again wanted to see how he did with a little spoon feeding. I sat in front of him and told him I had a spoon with a little ice cream on it, and he became agitated. I told him I was going to put a little ice cream on his lips, hoping that if he tasted it, he might be more interested, but he only became more agitated. So then I told him if he wasn't ready, that was fine, and I put the spoon down and showed him my empty hands. His agitation quickly decreased. We went through the same exercise with applesauce, with the same results. It was very obvious at that point that Collin understood what was going on. The only oral exercise he has any interest in is breastfeeding, so I tried nursing him, but he started coughing because of the mucus in his upper airway. I stopped because I didn't want to make things worse.

The first dose of chemo started at 4:30 PM. Prior to the start of the chemo drugs, Collin's tube feeding was stopped and he was given Zofran, Benadryl, and Reglan to help prevent nausea and vomiting; these drugs will be given throughout each course of chemo. The first chemo drug he got today was called Vincristine; it was given as an IV push with a syringe into the Broviac catheter in his chest and only took a minute or two to administer. He will get three doses of Vincristine during this first round of chemo-the dose today, a dose on day seven, and a dose on day fourteen. The side effects we watch for are jaw pain, constipation, and neuropathies. The second chemo drug he received today was called Cisplatin. It was given via IV over six hours. This was the drug that could affect his hearing, and it can cause kidney damage, so his urine output had to be closely monitored. So every time I change his diaper throughout the chemo, I have to wear gloves, put some cotton balls in the diaper so that a small sample can be squeezed out of the cotton balls to be tested for certain things, and his diapers have to be weighed to compare the amount of fluid going in versus the amount coming out. The Cisplatin will also cause low blood counts two to four weeks afterwards, so he will be monitored very closely for any signs of an infection because he won't be able to fight infection. If he gets the slightest fever, he will quickly be treated with antibiotics.

I found myself with mixed feelings about the start of chemo. On one hand I know there is no choice, and it's time to just get rid of what is making him so sick. On the other hand, we're pumping him full of poison that will make him more sick, increase his suffering, and possibly cause permanent damage, and it's terrifying.

Thursday, May 13

Yesterday when the bone scan was finished, they had to put a straight catheter in to get the urine out because that is how the dye used for the bone scan is excreted, and they wanted to make sure the dye didn't stay in Collin's body longer than necessary. It occurred to me that the last time Collin had a catheter, it caused a UTI, and so I wanted to make sure they were on the look out for that; I didn't want him to develop another one right before we wipe out his immune system with the chemo. So they collected urine for a urine analysis.

Collin was scheduled to have a baseline hearing test this afternoon, and then they added the bone marrow biopsy to the list of tests to be done today. This morning when the neurosurgeon checked in on Collin, he felt the fluid filled area on the back of his head had increased in size, and thought Collin's eyes were a little more crossed, so he ordered another CT scan to be done in the morning before his other tests. The CT scan didn't show any big changes, so another LP was added to the the list for the day so they could do another check on his fluid pressure. During the hearing test, the audiologist got a read on his left ear, but not on his right because he seemed to have some fluid in that ear. Since Collin was born in this hospital, they had his newborn hearing test on file, and at this point there is no reason to think he has any trouble hearing. After we got back to his room following the hearing test, it was time to turn right back around and go down for the bone marrow biopsy and second LP. The LP pressure was eleven (it should be below twenty), so there was no concern that the hydrocephalus was an issue. The initial slides from the bone marrow biopsy looked fine, but the final results won't be back until Monday.

Collin vomited tonight after the respiratory therapist gave his Albuterol treatment. I quickly learned how to turn on the suction machine and suction out his mouth to try to prevent him from aspirating anything into his lungs. The resident on duty came and listened to his lungs, but felt he sounded OK; she said since his respirations were fine and he had no fever, she didn't feel he needed a chest X-Ray. If anything changed overnight, she would order one.

Wednesday, May 12

OT worked with Collin this morning before his afternoon tests. She had him sit in a firm foam seat called a tumble form chair. He pushed a toy away when it was offered to him. He was fussy and agitated during therapy, but he did eventually calm down a little and seemed to tolerate it well; he sat reclined in the chair for about twenty minutes and did a good job keeping his head centered.

Over the last day or so, Collin has sounded more hoarse when he is crying, and he makes a lot of noise when he breathes. Respiratory therapy stopped in today and gave him Albuterol to open up his airway, and I immediately noticed a difference in how he sounded. He will have the breathing treatments twice a day.

Neurosurgery stopped in to evaluate the area of fluid collection, called a pseudomeningecele, at the back of Collin's head under his incision. The size of the bump seems to fluctuate, but it is soft. They will continue to monitor it.

Collin had to have a bone scan and a lumbar puncture this afternoon as part of the baseline tests prior to beginning chemo. The bone scan was to see if there was any cancer spread to his bone marrow, and the LP was to see if there were any cancer cells present in his CSF. Bill and I accompanied Collin down to nuclear medicine and I held him until they were ready for him. I laid him on the table and talked to him while they sedated him. One of the nurses there was the one who had talked to us the night he had the first MRI and had brought us to the PICU afterwards, and I knew he would take good care of Collin for us. When the bone scan and LP were completed, they took him to recover in the same room he recovered in the night of the first MRI, where the nurse let us use the phone to call who we needed to call after we were told about the tumor. I feel very anxious every time I have to go back to that area. While we waited for Collin to wake up from the bone scan, we met with the oncologist in the tiny room where they had first told us about the tumor. She reviewed the first round of chemo with us, and discussed some of the long term side effects. She told us there would be a fifty percent chance that Collin will need hearing aides, because high frequency hearing loss can result from the chemo. Because the Headstart chemo protocol has only been used for about fifteen years, there is not much data about long term effects on fertility, or other organs. She also said it is possible to develop a secondary cancer as a result of the chemo. About seven to ten days after the start of chemo, he will feel very sick, develop mouth sores, and start to lose his hair. I thought about his long, beautiful eyelashes that I love, and now they would fall out. Then the oncologist told us that the bone scan showed an area of question in one of his legs; it's possible that it could just be bruising from his unsteady gait and frequent falls. Based on previous blood tests and the fact that in most cases Medulloblastoma stays in the brain and spinal cord, she doesn't expect there to be any presence of cancer in Collin's bone marrow, but she has to be sure, so he will have a bone marrow biopsy tomorrow. He will also have a baseline hearing test tomorrow.

Tuesday, May 11

The neurosurgeon stopped in this morning and said the CT scan done last night showed no major changes; he said there was a little more fluid on the outside of the brain, but as the ventricles shrink a little, the fluid is redistributed. He wasn't concerned, and is ready to release Collin to oncology as his primary care group effective tomorrow.

The occupational therapist worked with Collin a little more today. At the end of her session she worked on trying to calm him. She used her hands to apply gentle pressure to help calm him; he is unable to make sense of different stimuli, so noise, sound, touch, etc. are stressful and/or painful to him. This afternoon I ordered a lightly weighted blanket to see if it helps him.

The physical therapist had him sitting in a special kind of chair for five minutes today. He tolerated it pretty well, and did a good job holding his head up. He even used both hands to push a ball away. He seemed to be moving his head and eyes a bit more to see what was going on around him; when he was sitting up in the chair, he looked down and saw the Broviac catheter coming out of his chest, and ran his hand over it to feel it.

He was started on TPN today, which is IV nutrition that is given through the Broviac. One bag is vitamins, and the other is fats and lipids. The oncologist wants him to gain some weight, because he's going to lose more during chemo. The tube feeding continues around the clock as well, but will be turned off when the chemo starts.

Monday, May 10

In my obsession to figure out the cause of Collin's vomiting, I began to wonder if it could be related to his reflux. At home he had been on Zantac and Prevacid, but for some reason he had been taken off the Zantac somewhere along the line here. So I questioned one of the doctors and asked that it be restarted. 

The speech therapist came again to see Collin. At this point she doesn't feel that feeding Collin orally is appropriate right now. He gets agitated if we try offering him anything, and she explained that with a 24 hour tube feeding, he doesn't feel hungry, and children don't have interest in eating if they're not hungry. The continued vomiting doesn't leave him with an interest in food either, and forcing the issue will only make the problem worse. Then she talked about how the type of feeding tube he has can exacerbate his reflux, because it doesn't allow the lower esophageal sphincter, between the esophagus and the stomach, to close all the way, which can allow stomach acid to come up. She said in the future we may want to consider switching to a gastrostomy tube the would be surgically placed directly into the stomach through the abdomen. He wouldn't have to be fed continuously for 24 hours, so he could have the chance to feel hungry, and it could still be used for medications so he doesn't have to taste them. The problem with placing one right now is that another surgery is another chance for infection, and infection of any kind need to be avoided with chemotherapy. Perhaps between rounds of chemo the switch could be made. 

The oncologist visited Collin again today, and said there could be many reasons for the vomiting. Along with the possibility that it is a side effect from medication, she said it could also be because of where the tumor was; however she feels it's pretty likely that the vomiting and agitation are due to the tumor cells that are still in his body causing irritation. She doesn't want to delay the start of chemo anymore, and encouraged me to ask for morphine for him when he seems uncomfortable, because there's no reason he needs to be uncomfortable. Since neurosurgery is for the most part done with Collin, he will be switched from neurosurgery as his primary doctors over to oncology as of tomorrow morning, and the chemo is still scheduled to start Friday May 14.

Collin did have morphine early in the evening, but a few hours later was very agitated and constantly rubbing his head again. I believe the head rubbing is his way of telling me his head hurts, so I am concerned whenever I see him do it. He was very difficult to calm down even after another dose of morphine, which is how he was the night they had to place the EVD. Neurosurgery came to the room around 11:00 PM, and decided to have another CT scan done to rule out increased cranial pressure. I was so afraid and didn't want him to go through the same experience, and I prayed and begged and pleaded that the CT scan would show no change. For the second time in the middle of the night I took my baby down to the basement of the hospital, a place that now makes me extremely anxious since that is where we were told of the tumor in the first place, to have another CT scan. With my heart pounding I placed him on the CT scan and helped strap him securely so he couldn't move. Then a few minutes later we were back in our room, waiting for the results. The nurse knew the scan had been read but legally couldn't reel me what the results were; I asked her to give me a hint as to whether I should start packing our things, or if I could try to rest. She told me to rest, so I tried to start breathing again. Eventually I fell asleep.

Sunday, May 9

Mother's Day

Because of Collin's increasing level of agitation, I asked to have neurosurgery come see him again. They felt his sodium level was a little low, so they were going to increase his sodium to help reduce the swelling in his brain. I also asked if any probiotics could be given with his tube feeding to help with the c-diff, so he was started on lactobacillus. He had another episode of vomiting overnight.

I had almost forgotten that it was Mother's Day today. Bill and Neya came to visit, and Neya gave me some great things she had made at school-pictures, cards, etc. At least I got to spend part of the day with both of my kids.

Saturday, May 8

Saturday was a pretty quiet day. Collin continued to have occasional episodes of vomiting, so he was given some anti-nausea medication and we just let him rest. At times when he seemed to get agitated or uncomfortable, the nurse was very good at applying the gentle pressure on different areas to help calm him down.

Friday, May 7

Collin had another episode of vomiting overnight. The vomiting scares me because it can be a symptom of hydrocephalus. This morning when the neurosurgeon made rounds, he asked if Collin had any facial expression yet. He doesn't; he has a very flat, blank look on his face all the time. The neurosurgeon said that is normal after a posterior fossa tumor resection surgery like Collin's, and hopefully it will improve over time. He said one of the first things that will come back will be Collin closing his eyes when he's sleeping; right now most of the time they are open when he is asleep. The neurosurgeon said there's no way to know how long it will take, but that he is amazed at the progress kids make in six months. This shocked me; six months seems like a very long time to wait to see my baby smile again.

The speech therapist came to work with Collin today. She wanted to see how he would do with spoon feeding using yogurt or applesauce. If we could get him to eat a little something, she would be able to do a swallow study, where she could take X-Ray type pictures to see if he can coordinate his tongue to get the food to the back of the mouth to swallow, and make sure the food goes down the esophagus and not into the lungs. If the food were to go into his lungs, he could develop aspiration pneumonia, which his body would have trouble fighting once the chemo wipes out his immune system. After he nursed for a little while, I tried putting the yogurt on my finger and putting it on his lips to see if he was interested; but before I could even put my finger on his lips, he started screaming and pushing my finger away. That ended the speech therapy session; eating has got to be a pleasant experience for him, and cannot be forced. We will keep trying as he let's us know he is ready.

The physical therapist came to work with Collin again. Collin again became agitated during the therapy, and when it was over I was trying to comfort him by stroking and patting him the way I would at home. But he just became more agitated. The physical therapist laid her hands on Collin's chest and stomach, and applied a gentle, constant pressure. He calmed down almost right away. It was very upsetting to me not to even know how to comfort my baby anymore. The physical therapist explained that right now Collin has to relearn how to process the things that stimulate him, like touch, sound, movement, etc. For some reason, applying gentle pressure can help a child organize and process information and is therefore soothing. I asked if a weighted blanket would help, and she said it might. She said there are these things that look like long stuffed gloves that are weighted, and they can be placed or around babies to help soothe them. I had seen them online and thought they were kind of creepy, but since I just saw how the constant gentle pressure helped, I went to the gift shop and bought two. It hit me that Collin is like a newborn again; he has to learn how to process information, hold his head up, sit up, eat, and walk all over again. And he has to do all of this while we ply his body full of poison that will make him sick, give him mouth sores, make his hair fall out, and damage his hearing while it tries to kill the cancer cells.   

Now that the drain was removed, Collin didn't need to be in the PICU anymore, so we were moved to the hematology/oncology wing where he will receive his chemotherapy. The rooms are private, so finally he is in a calmer, quieter environment. It took a while to get used to Collin not being hooked up to monitors that showed his heart rate, oxygen saturation, blood pressure, etc. I was hoping that the first night of this move to a normal room would go more smoothly than the last time we moved (a few hours before he was rushed for the EVD placement). However, overnight he started vomiting and having diarrhea again, and there was no difference between the two. A portable X-Ray machine was brought to his bed to check his belly for an obstruction, but none was found. Neurosurgery came to assess him, but didn't seem to think it was related to his head. I told the resident about the recent vomiting over the last few days, and that a culture had been sent to check for c-diff, but that the last time I had asked about the result, it wasn't back yet. He checked, and came back to tell me the c-diff was positive, so Collin was started on another antibiotic to treat that. Our first night in our new room wasn't very restful at all.

Thursday, May 6

Collin vomited twice this morning, and had diarrhea. The nurse sent a stool sample to be cultured for c-diff. Clostridium difficile is a bacteria found in the intestines. When someone uses antibiotics, like Collin had to to treat the urinary tract infection, the antibiotics can upset the balance of good and bad bacteria in the body. When the good bacteria is reduced, the bad bacteria can take over, and infections like c-diff can occur. C-diff causes diarrhea and sometimes vomiting, and is treated with yet another antibiotic. We should know in a few days whether or not he has c-diff.

The neurosurgeon felt that since the EVD had been clamped for four days without Collin having any major neurological changes, and the CT scans showed very little change, that the drain could be removed. Collin had a dose of morphine, and the neurosurgery resident gave him a little injection of a numbing agent at the site of the drain. Within just a few minutes, the drain tube was removed, a stitch was placed to close the opening, and it was done. On one hand I was glad that he didn't need a shunt, but on the other hand we still have to watch for signs of hydrocephalus, so I'm still fearful something will change. To need to have a shunt placed in the middle of chemo wouldn't be a very good thing due to an increased risk of infection. While the drain was in, I could look at the monitor and see the ICP number (inter cranial pressure; if the number was below twenty, things were good), which was reassuring to me. Now that the drain was removed, that number is gone, and I find it very unsettling not to be able to look and see that things are OK.

Wednesday, May 5

Another CT scan was done today to check the size of the ventricles. It showed only a very slight enlargement in the front ventricle. Neurosurgery decided that if here were no major changes overnight tonight, the EVD will be taken out tomorrow.

The oncologist checked in with us again. She would like to see Collin gain about a pound before the chemo starts, but this seems to be difficult because every time he goes under anesthesia, his tube feeding needs to be turned off for so many hours beforehand. Her goal is to start chemo a week from this coming Friday, May 14. She made sure my support system is still strong because she said about a week after the chemo starts is when it's really going to be hard on me. So far none of this has been easy, so I'm starting to get really worried about what's to come. But I cannot think ahead, I can literally only handle about five minutes at a time. I cannot let myself feel anything, because if I feel, I don't know how I'll survive. Keeping myself numb is the only way I can be strong for Collin.

Tuesday, May 4

The neurosurgeon said that today he feels better about how Collin is doing than he felt yesterday. Another CT scan will be done tomorrow to decide once and for all whether to place a shunt.

For the second night in a row, there was an admission in the middle of the night in the PICU bed next to Collin's. The activity woke me up and seemed to overstimulate Collin a bit. I had been told by a nurse that ideally, because of the brain surgery, Collin should be in a cool, darker, quiet environment, so I asked if there was any way that he could be moved to one of the empty rooms at either end of the PICU.  Later that day we were moved to the semi-private room.

I left the hospital for a few hours to get my eyeglasses fixed and go shopping for some comfortable clothes to live in in the hospital.

Monday, May 3

The neurosurgeon came to talk to us Monday morning about the CT scan done Sunday. Even though Collin's ICP numbers were still low even with the drain clamped, he said the ventricles were slightly enlarged, so before placing a shunt he wanted to perform an Endoscopic Fenestration, where he would go in through the drain site with a tiny camera to look for any clots that could be blocking the ventricles or aqueducts that are the passageways in the brain for draining the CSF. After the procedure, he told us he had found two sesame seed sized blood clots which he was able to remove, so instead of placing a shunt, he replaced the drain to see if the CSF would now drain better on its own. He had hoped to be able to do an Endoscopic Third Ventriculostomy, where he would create another passageway in the brain for the CSF to drain; in order to perform the procedure with the least amount of risk, the area had to be translucent so damage to the brainstem could be avoided. The area in Collin's brain wasn't translucent because there were tumor seeds there, so he was unable to perform the procedure. He said the presence of the tumor seeds wouldn't alter the treatment or prognosis of Collin's cancer, but I still got a sick feeling in my stomach.

The Broviac catheter was placed by a pediatric surgeon after the neurosurgeon was done with Collin. When he was done in surgery, we were able to go the the Post Anesthesia Care Unit, or PACU, to be with Collin as he woke up. Prior to the surgeries that day, Collin's head had a dressing over the drain tube coming out of his head, so I wasn't prepared for what his head looked like without the bandage. The sight of his little body again brought me to tears.

The oncologist has been stopping by regularly, keeping close tabs on Collin, and as soon as he is finished with all of the neurosurgery issues, she will take over as his primary doctor. She again said how her goal is to start chemo three weeks after the tumor resection. It suddenly hit me that we're not going to make it home again before chemotherapy starts.

Sunday, May 2

A follow-up CT scan was done to monitor the size of the ventricles in Collin's brain to determine if he would need a shunt. If a shunt was necessary, of course we'd want him to have one, but from a chemotherapy standpoint, one less possible source of infection would be a very good thing. We were told that surgery had tentatively been scheduled for Monday to place a shunt. The oncologist had also talked about having a Broviac catheter placed in Collin's chest; it would be the port where the chemotherapy drugs would be administered, and would also be the site where blood could be drawn for labs. A Broviac catheter can be in for much longer than the femoral line in Collin's groin, and had a much lower risk for infection. She planned on having the Broviac placed while Collin was still under anesthesia from the shunt placement so he didn't have to be put to sleep twice.

The rest of the day was pretty quiet; Collin still had to stay in the crib with his hands restrained and was resting comfortably with morphine; it was nice to see him peaceful instead of agitated and moaning. Bill stayed with him in the PICU while I went home for a few hours to shower and see our daughter. It was another beautiful day, and as I drove home, I remember thinking it didn't seem right that the day was so nice when my heart was hurting so much.

Saturday, May 1

Another CT scan was done Saturday morning to see how the ventricles were looking. Based on the results of the scan, the EVD was clamped, which meant that no fluid would be drained out of Collin's head. By challenging the drain, he could be observed to see if the CSF started draining better as the swelling in the brain decreased. If he started to get into trouble again, they could quickly open the drain and let fluid out. The CT scan also showed a small epidural hematoma (a pocket of blood and air) at the sight the drain was placed; it was expected to resolve on it's own. Another CT scan would be done in a few days to monitor how things were going. 

A nasal swab is performed every seven days to check for MRSA, or Methicillin-Resistant Staphylococcus Aureus, a bacterial infection that is highly resistant to antibiotics. Collin's second swab came back positive for it. It is considered colonized at this time, which means it is not an active infection, but now any staff working with him has to wear gowns and gloves, which they remove when they are done working with Collin, so they don't spread it to another patient. It may also mean that he'll need to be treated for it when he starts chemo so that when his immune system is compromised he doesn't end up with an active infection that would put him at risk.

The results of the other cultures sent Friday came back; Collin now had ecoli in his urine. A foley catheter had been placed to collect urine for 24 hours to get a baseline kidney function assessment before the chemotherapy starts. Anytime a catheter is placed, it introduces bacteria in to the urinary tract, which can cause a urinary tract infection. So, he was started on an antibiotic to treat his urinary tract infection.