Friday, July 30

The last two days have been pretty busy. Yesterday started with our home nurse coming at 8:30 am to draw blood for labs. Then at 9:00 am the team from Early Intervention came to do Collin's evaluation. The team was the Service Coordinator, a Physical Therapist, and a Speech Therapist. The evaluation took about three hours. In the end, it was determined that Collin does qualify for some services, but since we are going back to the hospital on Monday for his next round of chemo, he will be put on hold for the time being. He is in the system now though, and they will come re-evaluate him when he is finished with the rest of his treatments so that the services can begin. It was interesting to see how Collin did on each of the tests they used to determine his level of functioning. Overall it seems he is doing pretty well; in most of the areas he has deficits, he is only about four to five months behind where he should be. That accounts for the time he has been sick and hospitalized, and says to me that he hasn't gone backwards as a result of his illness, but rather just stalled for a little while. I think that with time and effort, he will be able to gain what he missed, and move forward. The other wonderful thing to see during the eval was how Neya handled everything. She sat by Collin's side for most of it, and was very involved with helping him, encouraging him, cheering for him, and answering questions. By the end of the eval, the team members felt that Neya has a future as a therapist! It was so heartwarming to see how the bond that Neya and Collin share will help get him through this challenging time. She is a great big sister!


Today Collin had his last outpatient OT and PT sessions before he goes back to the hospital. He worked hard and had fun, and we expected him to fall asleep as soon as we got in the car to come home. He had other ideas though, and stayed awake the whole time. He had a great lunch and dinner today, and ate well at both meals. I tried to get him to take a nap this afternoon, but he wanted no part of sleeping then either. We went for a walk since the day was so beautiful, which he seemed to thoroughly enjoy. This evening he enjoyed playing with the stethescope; he puts the earpieces around his neck and puts the other end on his chest, just like the doctors do when they examine him. He held the bottle of eye drops, and when asked where they go, he pretended to put them in his eyes. He also likes to pretend to take his temperature with the temporal thermometer. It is so cute, and funny, to see his pretend play. He also seems to be talking more in the last few days; tonight I took him dowstairs and told him it was time to say "Night, night." Right away he said "na na" in the same sing-song tone of voice I had used.

Wednesday, July 28

This week, Collin's oncologist is in Iowa, participating in RAGBRAI®, The Register’s Annual Great Bicycle Ride Across Iowa®. An Iowa tradition, it is an annual seven-day bicycle ride across the state, and it is the oldest, largest and longest bicycle touring event in the world. It started in 1973 as a six-day ride across the state of Iowa by two Des Moines Register columnists who invited a few friends along. It now attracts participants from all 50 states and many foreign countries. It has covered thousands of miles through the years, and hundreds of thousands of riders have participated.

Dr. Comito is dedicating her ride to all children with brain tumors, and she is being sponsored by the Kyla Miller Foundation. If you would like to make a donation to sponsor Dr. Comito and fund research for childhood brain tumors, you can follow this link: http://www.kylamillerfoundation.org/ragbrai.html

Tuesday, July 27

Collin's fussiness, restlessness, and poor sleep continued yesterday and last night. It was very rough knowing that something wasn't right, but not knowing quite what the problem was and how to make it better. Today we had a clinic appointment, and in talking to the doctor we quickly figured out what was making Collin so unhappy. The labwork done yesterday showed his blood counts to be very high-higher than even before he started his first round of chemo; the Neupogen shots did their job and caused Collin's bone marrow to produce a LOT of blood cells. The doctor explained that the whole process actually causes the bones to expand and ache, so for the last three days, Collin's little body has been hurting. On one hand it was a relief to know what the cause of his discomfort was, but on the other hand I feel like a bad mother because despite him having had Neupogen twice before, it never occurred to me that that was why he was uncomfortable and I should have given him pain medication. So now we are treating his pain, and in a few days he should be feeling better.

Sunday, July 25

This weekend was another quiet one; we just stayed home because with Collin's weakened immune system we don't want to chance taking him around large groups of people and exposing him to anything. The last two nights he did not sleep well; he was restless and woke up frequently. He has seemed fussier during the day as well. Luckily he has not had a fever since coming home from the hospital Friday. His bloodwork on Friday showed his hemoglobin level to be 8.1; he usually needs a blood transfusion if he falls below 8. If his level is still low, it's possible that he just doesn't feel well, and that's why he's been so fussy. A nurse will come draw blood for labwork tomorrow morning, so hopefully by the end of tomorrow we'll know if his hemoglobin is up or down and whether he'll need another blood transfusion. I'm also hoping the bloodwork will show that his immune system is increasing enough that we can stop giving the Neupogen shots!

Tonight I was trying to get Collin all ready for bed a little earlier since he doesn't seem right. But as usual, things didn't go as smoothly as I had hoped. As I started to give his meds through his NG tube, it clogged. We tried flushing it with some soda hoping the carbonation would help dissolve the clog, but it didn't work. We were left with no choice but to replace the feeding tube again. It was the last thing I wanted to put him through, especially after Bill had just given him his shot. Overall though, the procedure went much quicker than the last time I had to replace the tube. I ended up putting it in the left side of his nose this time, because the skin on his right cheek is so red, irritated, and sore from the tape used to hold the tube in place that I wanted to give his skin a break. Now I just hope he doesn't start to pick at the tube because he's not used to it being on the left side of his face.

Friday, July 23

Collin has remained fever free, his counts are slowly rising, and his cultures were still negative, so we were given the news that we could go home today. When Collin saw me get the stroller out from under the bed when I was getting our stuff ready to go, he pointed to it and got all excited! He was definitely happy to be home. Going back on August 2 will be hard, for both of us.

Thursday, July 22

Collin seemed to be doing very well today. We got more rest than I expected last night, and he had a good nap today before lunch. He was interested in eating and playing. This afternoon I was feeling tired so I thought we'd both lay down and hopefully take a nap, but Collin thought it would be more fun to climb all over me and the bed for half an hour; he had a ball! He also enjoyed looking out the window and watching the construction for a little while; he pointed at the trucks and the crane, and then kept pointing over above the building where we saw the Lifelion helicopter coming in to land yesterday. I think he wanted to see it again. Tonight he had fun bouncing and dancing to musical Sesame Street clips on You Tube. He did a lot of babbling and "talking" today as well.

The attending physician said that in order to be discharged, the blood and urine cultures will have to be negative for 48 hours, he will have to be fever free for 48 hours, and his blood counts will have to be above a certain level. So far the cultures are negative, he's had no fever, and his counts are slowly rising, so as long as tnings continue as they are now, the doctor thinks we'll get to go home tomorrow, or Saturday at the latest.

When I was giving Collin his sponge bath tonight, I realized that his eyelashes are falling out. It's such a bummer, because he had very long, beautiful eyelashes. I hope they are just as nice when they grow back!

Wednesday, July 21

I was keeping a close eye on Collin's temperature last night. If it were to reach 100.5 and stay there for four hours, or reach 101, I was to call the triage number and ask for the on-call heme/onc fellow. I told Bill I figured his temp would spike ovenight, since that's what happened in rounds 1and 2. A few times yesterday it went up to around 100.4, but then an hour later would be back down to 99 something. Around 1:00 AM, Collin woke up fussing, so I again took his temperature. My ear thermometer read 102.7, and my temporal thermometer read 101, so I called, and as expected was told to bring him in. As soon as I got off the phone, he threw up all over himself; I don't know if he threw up because he was fussing, or was fussing because he was going to throw up. I got him cleaned up, put him and the suitcase in the car, and headed for the hospital. We went right up to the pediatric heme/onc wing, and were admitted to the only available bed-our old room. Sadly we felt at home right away, and fell into our old routine. The residents and nurses checked Collin out; they did blood and urine cultures and had a chest X-Ray done to try to pinpoint the infection. He was given Tylenol and was started on the same two broad-spectrum antibiotics as the last two times we've been through this. At 4:30 AM his temp was 103.6, which is as high as I've ever seen it. He's in good hands though, and we've been through this before. His temp slowly dropped during the day, and this afternoon was 101. By tonight it was under 100. The attending physician said we'll probably be here at least three days.

Late this afternoon the charge nurse came and told me they were going to have to move us to a different room. The room we were in is a transplant room, so it is close to the nurses station and has extra monitors. Since we are not at the transplant stage yet and are not currently receiving chemo, they moved us into the regular med/surge hall. I completely understand the reason for the move and have no problem with it, but it was kind of a bummer to leave our familiar surroundings and nurses. As I carried Collin out of our old room, he got excited, and I think he thought we were leaving to go home. When we went down the other hall and into another room, he was a bit agitated for a while. I'm sure part of it was because he wasn't feeling very well, but I also wonder if part of it was because now he was in a different environment with different nursing staff who he doesn't know. Unfortunately the new room doesn't have a fridge and is in a very high-trafficed hallway (which is still very noisy despite the fact it's almost 10 pm as I type this!); however at least it is a private room (not all rooms in this hall are; having anything but a private room would send me over the edge right now!) and it does have a bird's eye view of the construction on the new Children's Hospital being built. Unfortunately right now Collin doesn't seem excited about watching the giant crane and other construction equipment. He did however seem to notice the Lifelion helicopter coming in for a landing when I pointed it out to him, and he smiled and pointed at it.

Here's hoping for a better night's sleep tonight!

Tuesday July 20

We had an 8:15 clinic appointment this morning for Collin's blood transfusion that took place over four hours. When we got to the infusion area, the reclining chair was set up with a pillow and blanket; the nurse told me that the special pillowcase (with whimsical dogs and pawprints all over it) was Collin's to take home (there are organizations like ConKerr Cancer (ConKerrCancer.org) that make special pillowcases for kids in hospitals). I was very touched by the gesture; someone somewhere took the time to do something special for these kids who go through so much. Collin was given Tylenol (standard procedure before a transfusion), and while we waited a little while to give it a chance to work before the transfusion started, Collin nursed and promptly fell asleep. Last night he woke up many times, so I knew he had to be tired this morning, along with feeling run down due to being anemic. The nurse hooked up the blood, and the transfusion got underway. Collin woke up about 40 minutes later, and we looked at books, colored, had a snack, and played a little. Eventually Collin nursed again, and fell asleep again for a short time until the infusion was done. Everything went well, and the staff were so great. The nurses are as wonderful and caring as the ones in the hospital, and three of the doctors saw us and came to say hi and see how Collin was doing even though we were not scheduled to see them today. They all genuinely care about their patients. Luckily Collin didn't develop a fever during the procedure, so we were able to come home afterwards. I'm continuing to monitor his temperature closely; it is up this evening, but not high enough to get him admitted to the hospital, at least so far. I'm hopeful that we won't have to go back to the hospital until his next scheduled admission on August 2.

Monday, July 19

Chemo Round 3, Day 17

This morning Collin played on my bed with Bill and Neya while I got myself ready for the day. He and Neya were playing with the iPad, and Collin decided to groove to the music of one of Neya's favorite games. When I saw him, I grabbed my phone and filmed him. He was so funny!

The outpatient physical therapist was very pleased with Collin's progress today; it's been about ten days since she has seen him. He did very well pulling himself up to stand, standing (with assistance), and was very eager to walk (also with assistance). In fact, he had so much fun walking, he had a little tantrum when it was time to leave!

At his clinic appointment, he received his last dose of Vincristine; it was the last chemo drug in this third round of treatment, and the drug isn't included in any of the future rounds of therapy. His blood counts are low, and his hemoglobin level is low enough that we will need to return to the clinic tomorrow for another blood transfusion. I don't know quite how I'm going to keep Collin occupied in the little curtained infusion area for four hours tomorrow while he is given the packed red blood cells; I can't carry enough toys to keep him busy for that long! The nurse also warned me to pack a suitcase because now that his counts are so low, if he develops a fever at home, or while he is receiving the blood tomorrow, he'll be readmitted to the hospital for a few days. Our things are already packed and ready to go, so hopefully that means we won't need them. Like Bill says, be prepared for the worst but hope for the best! It looks like Collin will be readmitted to the hospital for the fourth round of chemo on August 2; I'm hoping we'll be home by August 30, Neya's first day of first grade!

Saturday & Sunday, July 17 & 18

Chemo Round 3, Days 15 & 16

The weekend was quiet. We've just kept Collin home so as not to take the chance of exposing him to a bunch of germs while his counts are low, and also to keep him out of the heat and sun as much as possible. He has been babbling more, and trying to copy things that Neya says to him. We enjoy hearing the new sounds he makes. He also pulled himself up to standing many times this weekend, with less effort than it took before; he can also stand for a short period with less assistance. He can also crawl/scoot himself short distances across the floor to get to a toy. He is continuing to use his right hand more when feeding himself, and enjoys using the spoon with either hand to feed himself. I also noticed he has cut three of the four teeth he had coming in; Methadone seems to have given him a break from the teething discomfort he used to experience...;0)

I tried again last night to give the Neupogen injection, but again he moved his leg and the needle came out, and I couldn't bring myself to stick him again, so Bill had to do it. Tonight I just saved us all the trouble and had Bill do it. Thankfully he is able to do it with no problem!

Tomorrow Collin has physical therapy, and then a clinic appointment to receive the last dose of Vincristine in this round.

Friday, July 16

Chemo Round 3, Day 14

Today was a pretty quiet day. There wasn't a lot of vomitting or any major catastrophes. I found washable waterproof bed pads (like the hospital has) online and ordered a few to help save on having to change the sheets and mattress pad on a daily basis; they should be here tomorrow (not a moment too soon!) This evening I got the Neupogen injection ready, but I just couldn't bring myself to give it, so Bill had to. We put ice on the spot beforehand, so when Bill put the needle in, Collin didn't even flinch; but he did cry when Bill had to draw the plunger back a bit to check for blood and then push the plunger to administer the medicine. The home nurse said yesterday that the medicine burns going in, and can cause nausea and vomitting (something new for a change!), diarrhea, headache, and bone pain. I do think when Collin had the Neupogen in the hospital it eventually made him uncomfortable, so I'm keeping a close eye on him. I'm also monitoring his temperature closely; so far so good.

Today during lunch Collin used his right hand to take the spoon from my hand to feed himself; it was the first time he's done so with the right hand. He also was really trying to copy Neya when she was talking to him, and some of the sounds he made were pretty clearly imitations of her. It's a lot fun to hear him make new sounds.

Thursday, July 15

Chemo Round 3, Day 13

Today was one of those days where I just felt sorry for myself. I have lost grandparents to horrible diseases like Alzheimer's and Lou Gehrig's Disease, and I lost my only sibling to a brain aneurysm when he was only 23; I don't understand why those painful experiences weren't already enough for a lifetime. I don't understand why I had to go through so much to become a parent, and now I have to watch my child suffer, and face the possibility of losing him. It's hard to see other kids Collin's age doing the normal things he should be able to do but can't right now, like walk and talk, or have play dates. I'm tired of being thrown up on, or always being on the lookout for signs I'm about to be thrown up on, and of cleaning up vomit and other bodily functions. I'm sad, and scared, and angry, and tired, and nowhere near as strong as people say I am.

Collin made it through last night and breakfast this morning without throwing up, so since I had some things to do (laundry, etc.) and Collin always wants to be with me, I thought I'd put him in the mei tai carrier that we used to love so much and wear him on my back so I could get a few things done. I started going about my chores, and, of course, that's when Collin threw up. All over himself and my back. Then in the process of trying to clean him up, the dressing over his Broviac came off with his clothes (the dressing was smaller than normal and apparently wasn't sticking as well), so I had to change that. I had only ever done the dressing change with supervision, never completely on my own, so I was nervous about it; it has to be kept sterile. But I had no choice. The dressing kits that the home health agency provided are a little different than the ones I had used in the hospital; the biggest problem was that the sterile gloves were too small, which makes things more difficult. There were also no extra masks, and I had to open a second kit to get a mask for Neya to wear while she held Collin's hands to keep him from touching the site, which meant that the rest of the kit is not sterile anymore for a future dressing change. Then I had difficulty getting the sterile gloves on; I ruined the pair from the kit I was using by accidentally touching the outside of one glove with my ungloved other hand; and then I ripped a glove from the kit that had contained Neya's mask, so I had to open a third kit. Luckily I got those gloves on and was finally able to change the dressing before having to go into the fourth and last sterile kit I had.

The nurse from the home health agency came this evening to teach us how to do the subcutaneous injections of Neupogen that will stimulate Collin's bone marrow to produce the blood cells that will help him fight infection. He has had the drug following the previous rounds of chemo, but when it was administered in the hospital, it was done as an IV infusion through his Broviac. Bill and I gave hormone injections to me when we were going through fertility treatments, but it's different to give an injection to your own child. The needles are small, and the injection goes into fatty tissue, not muscle, but it's still really hard emotionally for me to do to Collin because I know it hurts. I hope we don't have to give them for long. On the plus side, when the nurse looked at the dressing I did today, he gave it an A+.

Wednesday, July 14

Chemo Round 3, Day 12

Collin received his second doses of Cytoxan and Mesna last night. His tube feeds were held last night to keep him from being so nauseous; he only vomitted once this morning. He didn't have much breakfast, and our discharge today hinged on whether he was able to eat lunch and keep it down. Luckily he ate very well at lunch, and didn't vomit afterwards. We got home around 4:00 pm. Tomorrow a visiting nurse will come and show me how to give subcutaneous injections of Neupogen, which will help increase Collin's neutrophil production (the white blood cells responsible for fighting infection). I've had to give subcutaneous injections to myself, which was not a big deal, but I suspect it will be a little different (ie. harder) to give them to my baby.

It's so nice to be home again. Collin will be admitted to the hospital for his next round of chemo either the last week of July or the first week of August. Then we'll be in the hospital for another 3-4 weeks. Hopefully then we'll get to come home for a week or so before heading back for another 3-4 weeks for the fifth round of chemo. After that, we'll have a few weeks at home, and then we'll go back for another month or so for the final high dose chemo with the stem cell rescue. It looks like we'd be finished around the end of November. I'm not sure I have the stamina to keep doing this. Even though Collin seems to be doing so well, I hate that we have to deal with all this. It's just not fair.

I read this poem online today, and thought I'd share...

I hate my shoes.
Each day I wear them and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortab​le.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes, I am a stronger woman.
These shoes have given me the strength to face anything.
Th​ey have made me who I am.
I will forever walk in the shoes of a woman who has a child that ​is battling cancer.

Tuesday July 13

Chemo Round 3, Day 11

Last night wasn't very restful; the chemo drug was administered between 9:00-10:00 pm, and then the rescue agent and Lasix (a diuretic) were given to help Collin's body get rid of the chemo drug. This meant that Collin's diapers were soaked quickly, so he needed to be changed often throughout the night. He also had a few small episodes of vomitting. This morning he was very enthusiastic about breakfast, but after he ate it just came back up again.

We got to see many friends today; it was nice to catch up with the therapists and some of the many nurses we got to know during our last stay. In many ways it feels like we never left! But we are both eager to get back home, and I know it's going to be rough on all four of us when we have to come back in a few weeks for a longer stay. 

Monday July 12

Chemo Round 3 Day 10

I woke up hoping for an easy morning to make the transition back to the hospital less stressful, but things don't always go the way you hope. Yesterday I had made sure the things we'd need to take with us today were ready, and had tried to make sure things around the house were caught up, like laundry, vacuuming, etc. so I wouldn't be coming home to a whole mess of things to do. Collin woke up this morning and had a small episode of vomitting, but luckily that was only on the waterproof pad I had under him, so it didn't get on the bed; I didn't want to have to change the bed this morning. I changed his diaper, and then nursed and played with him until Bill could take over playing with him while I got myself ready for the day. When Bill was ready, I went to give Collin to him, and realized that in the short amount of time since I had changed his diaper, Collin had pooped, and it had leaked-all over him, me, and of course, the bed. So I ended up having to change the bed anyway this morning, 

We had Collin's clinic appointment this morning. His vitals were taken, his labs were drawn, and we saw the doctor. Then we had to wait for his dose of Vincristine to come from the pharmacy, so we went to the cafeteria to have some lunch. Of course during lunch, Collin threw up, on himself and the stroller. I got him cleaned up, changed his diaper while I was at it, and then we returned to the clinic to wait for his chemo. A few minutes later, I thought I needed to change his diaper again, and the nurse came to get us for the chemo. I carried Collin to the exam room, and when I layed him on the exam table, I realized Collin's leg, and of course my shirt, were covered in poop. I had an extra outfit for him, so I got him cleaned up and changed, but I didn't have extra clothes for me. So I cleaned my shirt as much as I could, and the nurse gave me a patient gown to wear over my shirt until we got to Collin's hospital room and I could change. After he received his dose of chemo, we went up to the lobby to wait for Bill to come with our things, and then went up to Collin's room.

It is nice to see so many familiar faces now that we're back in the hospital, and at least the hospital routine is now familiar as well, but both Collin and I just want to go back home. At least this stay should only be two nights; it will definitely be harder to come back when it will be for a longer stretch. Having to put most of the rest of my life on hold because of cancer gets me down sometimes; today one of my best friends from college had her first baby, and I couldn't even go to see her and the baby like I so desperately wanted to. Even though I know she understands, it really made me sad, and I feel like I'm missing out on something special. I guess I envy her too in a way, because I remember the joy of having a new baby, and all the dreams you have for that tiny new person; I wish my dreams weren't now tinged with uncertainty and fear.     

Saturday & Sunday, July 10 & 11

The weekend was pretty quiet. Saturday, our pediatrician came by to see how Collin was doing, and again seemed pleased with the progress Collin has made since the last time he saw him. He was amazed to see Collin sit on his new little motorcycle and push the button that turns the bike on and off. His balance while sitting on the bike has already improved. He also saw Collin have a little snack, and was impressed at how Collin took the spoon from my hand to feed himself, and he could see that Collin was pleased to be able to drink by himself using the bottle. Collin is at the age where he wants to do things himself, and he is proud when he can accomplish that.

Sunday I ran a few errands by myself to get out of the house a little bit, and then made sure the things we will need to take to the hospital were ready. Sunday evening I gave his last dose of oral chemo at home. We have an appointment at the outpatient clinic in the morning, and will then be admitted to the hospital from there so Collin can be given some of the chemo meds that require closer monitoring. Hopefully we should be able to come home Wednesday.

This weekend I couldn't help but think of what we were doing this time last summer. My parents were visiting from Houston, and we had a family reunion to celebrate my parents' 40th wedding anniversary. We had so much fun, and my biggest worry at the time was whether we'd pull off surprising my Dad, and whether it would rain the day of the party. I had no idea how much life would change a year later, and I wish we could just go back to that simpler time.

Friday, July 9

Chemo Round 3, Day 7

Collin and I were out for a good part of the day. He had outpatient OT and PT, but the appointments were spaced just far enough apart that we would have had to rush to go home, eat lunch, and head back again; so instead we had lunch in the cafeteria between appointments. That way we could take our time since Collin doesn't eat quickly; after lunch Collin had a short nap as well. He enjoyed both therapy sessions, and he works hard without realizing it. He definitely knows what he wants, and can express himself! He gets excited to see the toy kitchen every time we are there, and he also saw some balls he wanted to play with. The occupatioanl therapist kept trying to engage him in different activities, and he would try them out a few times, and then point to the balls. When the therapist would try to refocus him on her activity, he would shake his head and point again to the balls. So she changed her plan a little and played with the ball with Collin. He worked on sitting balance and using his right hand. During physical therapy the therapist worked on knee standing, and side-stepping. We can work on those skills more at home too.

Thursday, July 8

Chemo Round 3, Day 6

Today Collin made a little more progress with communication. During lunch, I asked him if he wanted more while signing the word "more." The sign takes two hands, which is challenging for Collin. He watched me repeat the sign a few times, and then picked up both of his hands like he was going to try. I helped him a little, and then he tried to do it on his own. Then a little later, he signed "all done," and I said "you're all done?" He then tried verbally saying "all done." I repeated it, and then he did, and we did this a few times. It was fun!

When we left the hospital, Collin was eating a pureed diet. He has progressed a bit since being at home, and can manage tiny pieces of food that he can pick up himself and chew. The pieces I give him are small enough that even if he doesn't chew them all the way, he won't choke on them, and I check his mouth between bites to make sure he's not pocketing any food in his cheek. He is doing well, and is very pleased to be feeding himself. Today he kept taking the spoon from my hand and putting it into his mouth. I also tried something different for feeding him liquids. He has been either sipping liquids from a spoon, or drinking them out of a sippy cup with no valve, as he is still not able to suck strongly enough to get the liquid past the valve; I have also tried the straw cup that used to be his favorite, but it is also too difficult for him. The problem is that both methods are messy, and neither one he can do himself; with no valve in the sippy cup, he gets way too much at a time if he tries himself, and ends up gagging. It also makes it very difficult to give him a drink if we are out. So, since his speech therapist said in her hospital discharge summary that his oral motor skills are that of a 6-8 month old, I decided to try offering a bottle to see if he could safely feed himself liquid from it. I figured he wouldn't have to suck as hard, and the liquid wouldn't come at him all at once. At first he chewed on it, but then he started sucking and swallowing, so it seemed to work. He was able to safely feed himself, which made him happy; and I thought that at least he could work on improving his suck so that he could progress to a sippy cup, as a 6-8 month old would. The ironic thing is that it is the first time either of my kids drank from a bottle! I just hope that I haven't done something that will set him back or be counterproductive in any way; hopefully when we see our speech therapist in the hospital next week, she will approve!

Wednesday, July 7

Chemo-Round 3, Day 5

Today was a quiet day. We just stayed home in the AC, as it was too hot to take Collin out. This afternoon we had a visit from an Early Intervention service coordinator to start setting up additional in home services for Collin. With his diagnosis, he qualifies to have long term physical, occupational, and speech therapy at home in his natural environment, in addition to the outpatient therapies he is receiving at the hospital. Early Intervention also provides other individualized developmental, educational, and family supports. Our hope is that over time, we can help Collin learn and grow to his full potential.

Tuesday July 6

As per my usual lately, I am behind on my blog entries, partly because I don't have much free time and by the time I sit down at night to write, I'm falling asleep. So let me try to catch up...

Sunday, July 4-Round 3, Day 2
Today was a quiet day. It involved an episode of vomiting, but that's not unusual. Collin had the last dose of the antibiotic he was on today, so that's one less medication to give; it'll be nice not to have to give the medication four times a day. Other than me running out to get my haircut, we didn't leave the house today; it was very warm, and I don't want to expose Collin to a lot of germs by taking him to crowded places. So this year we watched firworks on TV instead of going to see them in person. I look forward to taking Collin to see his first fireworks in person next year!

Monday, July 5-Round 3, Day 3
Collin had outpatient OT this morning. Bill and Neya came along. The therapist worked on getting Collin to reach with both hands to work on balance; use both hands to accomplish things using fine motor skills, etc. She had him putting pegs into a pegboard and pullin them out again, pulling apart big Lego blocks, reaching for and opening the different doors on the toy kitchen, and pulling magnets off a magnetic book. Neya was glad to be involved and help out by having Collin reach to hand her things, etc.

Collin has seemed to become very easily frustrated today. He is at an age where temper tantrums are sometimes a normal occurrence, and his physical limitations and inability to communicate his needs is adding to his frustration (and mine!) I have noticed my patience wearing thin because his and my frustration, along with his neediness, is constant. When I think about how he was even six months ago, a normally developing, sweet little boy, I get sad and angry that this disease has put us where we are right now. And then I tell myself I should be glad that he's doing as well as he is right now, and that someday he'll be back to normal.

Tuesday, July 6-Round 3, Day 4
We went to the outpatient clinic this morning. The nurse took Collin's vital signs, and she noticed that Collin was running a low-grade temp. Then we saw one of the doctors. He let me know that Collin would be receiving a half dose of the Vincristine today instead of the dose he has had in the past; if the recent eye deviation is due to Vincristine toxicity, they don't want to give him too much of the drug right now. He assured me that the half dose Collin would be getting was still enough to do what it needs to do.

While we waited for the Vincristine to come from the pharmacy, we went to a different office in the same building for an interactive audiogram to check Collin's hearing again; his oncologist is monitoring his hearing closely due to the possible effects the chemo can have. The test didn't take very long, and the results were the same as his other recent hearing tests; his left ear seems to be fine, but his right ear shows some hearing loss. It has been that way since the tumor was removed, before chemo started, so we don't feel the hearing loss is due to chemo. What I don't know is whether it is a temporary loss that will improve as he continues to heal from the surgery.

After the hearing test, we returned to the clinic and Collin was given the Vincristine. Then we stopped at the pharmacy, also in the same building, to pick up some refills, and then we came home. Collin eagerly ate lunch, but afterwards I checked his temp and it was slightly higher. I called the clinic to let them know, and spoke with Collin's oncologist. She wanted me take his temp again and call her back 30 minutes later, at which time she would determine whether he needed to be admitted to the hospital to be treated for infection. Luckily the temp was slightly lower. She called me about an hour later to check on him again, and the temp was still going down, so she told me to monitor him closely, and explained the procedure if it were to go back up tonight. She also let me know that his ANC, from the bloodwork done at this morning's clinic visit, was only 700; anything below 1500 means there is no immune system. I was relieved to get a reprieve for now, but the experience was a good test run for if we ever would need to be admitted unexpectedly. I have kept our clothes and other necessities packed and ready to go, which is one less thing to worry about in an emergency. And I will be watching his temp closely through the night tonight.

Saturday, July 3

Chemo Round 3, Day 1

Collin started out his day a little sick from last night's chemo. He enjoyed breakfast a little later though, and I used the fact that he wants to feed himself as an opportunity to encourage him to use his right hand more. First I was putting one piece of Kix cereal on his tray, and he would pick it up with his left hand, so I decided to put the piece of cereal on themother side where his left hand couldn't reach so easily. He switched to his right hand, and although it was more challenging for him to pick up each piece of cereal and get it into his mouth, he kept at it and was able to do it. I applauded each time he'd use his right hand, and he'd smile. He enjoyed dinner tonight too; among the goodies he ate were sweet peas, and blueberries cut into four small pieces. He could pick up each piece and feed himself. After that he ate a snack size cup of chocolate pudding, which he also enjoyed very much.

One of the things that has really touched me through this whole experience has been the kindness of others, many of whom we've never met. We have been brought many delicious meals and have offers of many more. Collin has received envelopes of cards and drawings from Neya's school class, and Sunday School classes from churches in different states that have helped brighten his days and his hospital room. Today we had a visit from the Guardian Knights, a local Law Enforcement motorcycle group, who delivered a tiny Harley motorcycle and personalized skull cap to Collin to brighten his day. He loves sitting on the bike and pushing the start button, and it is a great way for him to work on his balance without even knowing he's working! It was a very fun morning with great people that we will never forget! Thank you Guardian Knights!

http://www.guardianknightsmc.org/news.html

Friday, July 2

Chemo Round 3, Day 0

Collin started his third round of chemo today. We went to the outpatient clinic this morning, and while we were there we saw a few familiar staff faces from our stay in the hospital; Collin kept pointing to them as if he was saying,"Hey, I remember you!" We picked up the two chemo drugs that will be administered at home through the feeding tube. He was scheduled to get the first of three more doses of Vincristine today at the clinic, but his oncologist thinks there is a chance that the recent left eye turn could be a side effect of the drug, so she wanted him to wait a few more days before having the Vincristine. We will return to the clinic next Tuesday morning to have the dose administered. The two drugs he is receiving at home are Temodar and Etoposide (or VP-16). The Temodar is given once a day for 5 days, and the Etoposide is given once a day for ten days.They are both given orally through his NG tube. The Temodar can cause nausea, so I have to give him his Zofran (anti-emetic) beforehand; it also has to be given on an empty stomach, so I have to time dinner carefully so that he can be finished eating an hour before the drug is given; then I need to wait another hour before giving the rest of his medications and starting his tube feed. I was also instructed to wear gloves while administering the drug, and to bring back the empty syringes so they can be disposed of properly (instead of in our regular household garbage); it makes me nervous to handle something like that, let alone give it to my child, but I just remind myself how well the chemo seems to be working! Collin will also receive more Cytoxan during this round; for that we will be re-admitted to the hospital for about three days on Monday July 12.

Collin is vocalizing more; he is starting to learn to talk now that the tumor is removed. He has started to make sound he never made before, and in a way I feel like I'm starting to hear his real voice. I look forward to hearing all the new sounds he'll make every day!

Thursday July 1

Collin had his first outpatient physical therapy session today. It was at the same location as yesterday's OT session, and he was very excited to see the little play kitchen again! He again sat on the bench in front of it and tried to pull himself up to standing so he could reach better; when he is engrossed in play, he tries to do things automatically without thinking too much about them. The physical therapist assessed his abilities, and gave us a list of things to work on at home, such as balance while reaching, getting onto his hands and knees from a sitting position, etc. The session tired Collin out; he took two good naps today!

We took a stroll in the yard for a few minutes this afternoon to enjoy some of the beautiful weather we missed out on over the last two months. Collin seemed to enjoy being outside, and was excited when the gentle breeze blew. We didn't stay out long though because his skin is so sensitive and I don't want him to burn.

I've tried Collin with tiny pieces of food that he can pick up in his fingers and feed himself. He's handling them well, and enjoys feeding himself. The process is very slow, but it's nice to see his enthusiasm for eating again!