Tuesday, December 28 - Day +76

I have been meaning to do an update for over a week, but by the time I've gotten Collin to sleep I am drowsy myself, and sleep has won out. We are having a great visit with my parents, and between Collin's appointments and the activity of day-to-day life, we have been keeping busy. So here are the highlights since my last update...

Thursday, December 16
Collin and Neya had been sick on Wednesday, and Collin and I had spent Wednesday afternoon in the clinic. On Thursday, both kids were feeling better, so we felt it pretty likely that they both had the same 24-hour bug. Even though Collin's blood cultures were still negative for an infection in the mediport, we had to return to the clinic for another antibiotic infusion just to be safe. Luckily we weren't there as long as we were the day before, and Collin spent the time watching Elmo and Thomas dvds. When it was time for us to leave, all of the nurses from the clinic came into the room we were in, sang Happy Birthday to Collin, and presented him with a birthday banner and a gift. It was so nice!

Friday, December 17
Collin had a speech therapy appointment in the afternoon. He participated more than he had been so far and had fun earning stickers when he completed a task. It's nice to see him warming up to his speech therapist and interacting more with her.

Saturday, December 18-Collin's 2nd birthday!
We had a little birthday open house for Collin Saturday afternoon. We had family and a few close friends over, and I invited his medical team over for cake because without them Collin wouldn't be here to celebrate any more birthdays. Some of his nurses came by, as well as one of his occupational therapists and his oncologist. It was a very happy day, and a wonderful celebration!

Tuesday, December 21
Collin had an appointment with the ophthalmologist Tuesday afternoon. He was pretty happy with how the corneal abrasion is healing, and has decided to do surgery on Collin's eyes in February. The surgery is called a Bilateral Medial Rectus Recession. The eyeball has muscles attached to it, on the top, bottom, and either side; they move the eye up, down, and side to side. The ophthalmologist will detach the outside muscle from each eye and reattach them farther forward on the eye, so that the muscle will then turn the eyeball farther outward. The surgery will take approximately an hour and a half, and the recovery time will be six weeks. The ophthalmologist will monitor the results of the surgery, and may need to perform another similar procedure farther down the road on the muscles that pull the eye inward.

Thursday, December 24
Poor Neya came down with a nasty cold and a fever of 102, and was very disappointed to miss her Christmas pageant and Christmas Eve Mass. Collin's oncologist said I could take him to mass on Christmas Eve, and he was an angel through the whole service.

Friday, December 25
We had a wonderful, happy day being together with family. I was so thankful that Collin is still here with us, and kept thinking of the many families who were having to spend the day in the hospital with their child, and the families who had to get through this season missing a child whose battle with cancer has been lost. My heart breaks for them, and they are always on my mind and in my prayers.

Monday, December 28
We had the honor of hosting a visit from some of the wonderful members of our THON organization, Altoona THON. We had a great time getting to know each other, and learning more about the fundraising efforts of these selfless Penn State students. We are so excited to attend THON weekend in February; I know it will be an amazing weekend!

Today we are having a relaxing day at home. Neya is still sick, so she has a doctor's appointment later this afternoon. Thankfully so far Collin hasn't caught whatever it is she has, and I hope it stays that way. I've always hated this time of year when kids are always bringing some bug home from school, and it is more stressful now hoping that Collin doesn't get sick. We have had a great visit with my parents, and are sad to see them leave tomorrow!

Wednesday, December 15 - Day +63

My parents flew in from Houston today and will be with us for the next two weeks. My plan for today was to get Neya off to school, make vegetable soup in the crock pot, get the room ready for my parents, and finish some laundry, all before taking Collin to his speech therapy appointment at 4 pm. But you know what they say about the best laid plans...

At 2:30 this morning Neya came into our room crying. She said her head hurt and her throat was sore. I took her downstairs to take her temperature, which was 102. I gave her some children's Ibuprofen and got her settled back to bed. But a few minutes later she said she had to throw up, and ran for the bathroom. Sure enough...

At that point Collin was awake and screaming because I had left the room (he is still sleeping next to me in case he needs me during the night; we both sleep better that way). Neya wanted to come sleep in our room as well, but we didn't want her to be near Collin since she was sick, so Bill went to stay with her and I got Collin back to sleep. I took Collin's temperature, and thankfully it was 98.1. I managed to doze back off to sleep.

Around 7:00 am, Neya came in and told me she had diarrhea. Then Collin woke up, so I checked his temperature again, and now it was 100. I rushed around trying to get Collin and myself ready for the day, make sure our bags were packed, and put clean sheets on the bed for my parents. Collin and Neya were downstairs with Bill, and when I got downstairs Bill told me Collin had thrown up. I changed him, took his temperature again (it was now 101) and called the Hem/Onc office at Hershey Medical Center. They told us to come in to the clinic right away for blood cultures to be done to make sure that the new mediport wasn't infected. Then I called our pediatrician's office about Neya, and they said they could see her right away. So Bill took Neya to the pediatrician's office, and after I changed Collin's clothes again (he threw up a second time), I took Collin to the clinic.

Blood cultures were taken through the mediport (Collin did well again, just a little whimper as the port was accessed) and Collin got some IV fluids and an infusion of antibiotics. Since his ANC is 2700, we were allowed to go home (I expected to be admitted to the hospital, so going home was a nice surprise!) We will have to go back to the clinic tomorrow for another antibiotic infusion just to be safe, but it appears that Collin has the same (hopefully 24-hour) virus Neya has. By this evening Neya seemed to be feeling much better, so hopefully Collin won't be far behind. I managed to get home and make vegetable soup in plenty of time, and my parents arrived safely. I'm glad the day has ended better than it began!

Friday, December 10 - Day +58

This week has been a busy one!

Monday Collin had his mediport put in. His stomach had to be empty before anesthesia, so I turned his tube feed off at 4:30 am, and made sure he had his meds and any clear liquids he wanted by 6:30 am. On the days where Collin can't eat in preparation for anesthesia, the rest of us make sure we don't eat in front of him since it wouldn't be fair to him. We checked in at the hospital at 9:30 am, and we were brought into a little room in the Same Day Unit where I changed Collin into a hospital gown and the nurse, anesthesiologist, and surgeon come see us, have us update medical information, sign consent forms, etc. It was the same room we were in a few weeks ago when the Broviac was removed, and Collin recognized it and remembered the little TV right away. He was perfectly happy to watch and play with the TV while we waited. I like to stay with Collin until he is asleep, so I put on scrubs and went with him to the operating room. This time I asked them to skip the Versed (a drug that makes kids drowsy and less anxious before a medical procedure) that was given to Collin before the anesthesia when the Broviac was removed; as long as I stay with him he doesn't get upset, and I was hoping he would come out of the anesthesia quicker and calmer after the procedure than he did when the Broviac was removed. In the OR I put him on the table and stayed with him until the gas put him to sleep. Later after the mediport was put in and Collin was taken to the Post Anesthesia Care Unit, I went to be with him, and he woke up as I got there. He was still a bit agitated for a while, but he did wake up quicker this time. We were moved into another room in the Same Day Unit, and once a chest X-Ray showed the mediport was in the proper place and Collin could drink some juice and keep it down, his IV was removed and we were allowed to go home. Despite being at the hospital for most of the day, everything went smoothly, and Collin didn't seem to be in any pain that evening at home. The mediport is a small round device that is implanted under Collin's skin on the right side of his chest. There is a tube on the back of the device that goes into a vein, just as an IV would, and stays in the vein. Whenever blood has to be drawn or medicine has to be given intravenously, a needle is put through the skin into the mediport to access the vein. It's much better than having to be stuck multiple times to have an IV placed, there are no tubes sticking out of the body that can become infected, and unlike a Broviac, you can take a tub bath or swim with a mediport.

On Tuesday Collin had an 8:00 am speech therapy appointment. The speech therapist is working on building a raport with Collin, and will be working on cognition and speech. Collin didn't want to complete the task the therapist was having him do, so he spent a bit of the session upset, but he eventually finished and proudly carried his stickers with him for the rest of the morning. Following speech therapy, Collin had physical therapy. He is getting better at lowering himself back to the floor after he pulls himself up to stand, and can cruise side to side at a raised surface. He is still walking with assistance, but not independently yet. Tuesday afternoon, we went back to Hershey for an ophthalmology appointment. The sutures from the lateral tarsorraphy had disolved, and Tuesday morning when Collin woke up, his right eye was open all the way. The abrasion is mostly healed, but the ophthalmologist wants to do another lateral tarsorraphy to protect the eye since it still doesn't close all the way. He wants the tarsorraphy to be more permanent, which involves abrading the eyelids so they heal together; then the procedure wouldn't have to be repeated multiple times, and can be reversed when the time is right. At the same time, he would inject Botox into the muscle to relax it and allow the eye to turn outward; then Collin would be able to see better out of the right eye while the left eye is patched. I asked why he doesn't just do the surgery that would permanently turn the eye out, but he had a few reasons why he doesn't feel the time is right yet. Despite his answers to my questions, I don't understand his reasoning, and left his office a bit frustrated.

Wednesday Collin had occupational therapy. He participated well, and was chattering during the session. He was also behaving like a normal two-year-old, throwing some little toys with a big grin in his face instead of doing what the therapist wanted him to do. It was nice to see him exhibit normal toddler behavior! Thursday Collin had speech, physical, and occupational therapy again, so we were on the go all morning.

Today Collin had a clinic appointment. His oncologist is going to set up another hearing test so that if the high dose chemo caused any low frequency hearing loss we can have hearing aids fitted to help with learning speech. She is also going to invite the ophthalmologist to discuss his plans with the rest of the treatment team (oncologists, neurosurgeons, radiologists, etc.) to make sure they are all working toward the same goals. I am going to reduce Collin's tube feeds to one can at night and then try to wean him off completely. At the same time I will start getting him to take his medicine by mouth so that once he doesn't get tube feeds anymore, the feeding tube can be taken out. Collin will have his next MRI mid January. Then Collin had labs drawn today, so his mediport was used for the first time. I had put Lidocaine cream on the area before leaving home this morning, so the area was numb. The counselor from Child Life used small toys and bubbles to distract Collin while the nurse put the needle in and drew the blood for the labs. I was nervous when I saw the needle, but Collin didn't even flinch! I was so relieved! He didn't cry until I tried to get him dressed again, because he didn't want to stop playing. The visit couldn't have gone better!

Everyone seems pleased with how well Collin is doing, and I think he's doing great! I find myself feeling over-the-moon happy, but then I get nervous that things are going too well, because I know that things could change in an instant, and just because he's doing well right now is no guarantee that the cancer won't come back. We need a cure!

Sunday, November 28 - Day +46

Collin has been doing well since coming home two weeks ago. He's off the TPN, and the Broviac has been removed from his chest. His mediport will be inserted December 6. He is tolerating his tube feeds at 45 mL per hour without difficulty, so now I can just run them over night while he sleeps and he doesn't need to be connected to the feeding pump during the day. He is eating and drinking more, and while I'm not sure that he's eating enough to sustain him without the tube feeding, he's headed in the right direction. So far I have kept him on the nectar-thick liquids since he does so well with them, but he is now handling all food textures well again as long as the bites are small. He is crawling all around, pulls himself up to stand, and now bends his knees to sit back down (instead of dropping back onto his rear end). He has not vomited in a while, and the diarrhea finally seems to be improving. On Friday he had his first tub bath in seven months. At first he was terrified, but I held on to him until he was comfortable, and by the end of the bath he was having fun splashing the water the way he used to. He is growing eyelashes, and they are starting to darken. His eyebrows and hair are also starting to grow in, but so far they seem to be coming in white. I have been told his hair may come back a different color or texture, at least at first, and I can't imagine seeing him with hair that is a different color than what it used to be. The corneal abrasion on his right eye seems to be healing nicely, and he is getting used to having his left eye patched again. He has had a slight runny nose over the last few days, but thankfully has not had any fever.

Our schedule is now filling up with appointments for outpatient occupational, pysical, and speech therapy. These appointments, as well as the occasional clinic appointment, are really the only times Collin leaves the house. Since it is the beginning of flu season, we don't want to chance him getting sick. It is very difficult to get him to keep a mask on when we are out, although I can't really blame him! He will also receive therapy services at home through Early Intervention soon. I think he will make good progress, especially now that he won't have hospital stays for chemo to hold him up!

Thursday, November 25 - Day +43...Thanksgiving

This year I am incredibly thankful for so many reasons. I am thankful to be able to celebrate this Thanksgiving with my husband and BOTH of our children. My heart goes out to the many parents who are facing this holiday season (and life) without a child because of cancer. Please keep them in your prayers.

I am thankful for our families, who have been so loving and supportive throughout the past seven months. We love you all so much!

I am thankful for our friends, old and new, and even the ones we haven't met, who have prayed, visited, fed us, and sent messages of support, encouragement, hope and love. Thank you for helping hold us up throughout the last seven months!

I am thankful for the doctors, nurses, and therapists who have cared for us, educated us, cried with us, and celebrated with us. You have become like family to us, and we are forever grateful to you for everything you have done for us!

Happy Thanksgiving everyone!

Tuesday, November 23 - Day +41

Collin was added on to the surgery schedule today to have his Broviac removed. We had to check in at Admissions at 9:30 am, and we didn't get home until nearly 4:30 pm, but despite spending the day waiting, things went pretty smoothly. The actual removal didn't take long at all. It took Collin a little longer than usual to wake from the anesthesia, and when he did, he was agitated for a while, which wasn't the norm for him. But after a while I was able to offer him some juice, and he was able to keep it down. Once the IV was removed from his arm he was happier, and we were able to go home. He only has some little steri-strips on his chest, which will eventually come off by themselves, and on Friday he will be able to have his first tub bath since April! I can't wait to see his reaction! His mediport will be inserted on December 6.

Monday, November 22 - Day +40

Collin's clinic appointment this afternoon went very well. He was in a very happy mood, and was waving to everyone who said hi to him. Our oncologist said this was the best she's ever seen him since she met him in April. He waved to her when she came into the exam room, and even held onto her hands and walked around the tiny room with her. Despite the fact that the nurse got one of the single-lumen repair kits and was going to get creative with it to fix Collin's line, the doctor decided to just have it taken out since he's doing so well. She said she usually ends up just taking them out because they get a hole in them or get infected, so she wanted to remove Collin's before it becomes infected. Since he had just eaten lunch and didn't have the empty stomach needed for anesthesia, the surgery to remove the Broviac will be done tomorrow morning. I am surprised to realize that I have mixed feelings about this step! I remember how much I hated the Broviac in the beginning, and hated Collin being hooked up to IVs all the time. But somewhere along the line, without even realizing it, I came to appreciate and rely on the Broviac because it meant Collin didn't have to be stuck with needles all the time, and it allowed him to easily have all the medications he needed. Taking care of it, doing the dressing changes, flushing both lumens every day, etc. became routine. So as much as I am excited to finally say "bye bye tubies!" (which Collin was repeating during his sponge bath tonight) and see Collin finally get to have tub baths again (one more step toward normalcy!) there is a little part of me that will miss the darned thing! Of course, in a few weeks, after he is healed from the surgery tomorrow, he will get his new mediport put in so that blood draws and eventually maintenance chemo can be done easily, but from what I understand the port will require less care, and he'll still be able to get in the tub with it!

Saturday, November 20 - Day +38

The last few days have gone pretty well. We are seeing how Collin does without the TPN, and already I notice a difference. The vomiting and diarrhea have decreased, and he has more interest in trying to eat, especially lunch and dinner (I don't think he's very hungry for breakfast since he gets the tube feedings over night). I have slowly increased the rate of the tube feeds, and he is up to 30 mL/hr now. He's getting two cans (250 mL each) overnight, which is what he used to get; it's just still at a slower rate, but I think soon he'll be back to the 50 mL he was used to. Now that he's not getting the TPN, it's nice not having to carry two portable pumps over my shoulder in the evening as I carry him through the house, and once he's back up to the 50 mL/hr, I can just give him the tube feeds while he is sleeping, so I won't have to carry around the feeding pump either.

Wednesday Collin started back up with the outpatient OT. Thursday the Early Intervention team came back to do an assessment so they can get home therapy services started for him as soon as possible. Today we waited for an hour and a half for the ophthalmologist to take a five minute look at Collin's eye; thankfully the abrasion is healing nicely, and we can now go to every three hours with the ointment (instead of every two hours). The ophthalmologist talked about injecting Botox into the muscle that is causing Collin's right eye to turn in so much. About a week after the injection, the muscle would relax enough to allow the eye to turn out. The effect would last for about three months, and would enable the right eye to see better when the left eye is patched. The injection would be given under anesthesia, so it may have to wait until the next MRI, which will be done in January.

Last night as I was doing the nightly flush of the Broviac lumens, I noticed one lumen has a small hole in it. Of course it wasn't the one that was used to draw labs earlier Friday in the clinic, where it could have been addressed during normal daytime hours. I called the hem/onc unit desk and spoke to our nurses there, because obviously a hole in the line is a possible route of infection. One of the attending physicians was right there, and he consulted Collin's primary oncologist. Since Collin didn't have a fever, and because most likely at that time of night the ER pediatric surgical residents wouldn't necessarily be familiar with how to repair the line, I was told to chloraprep (clean) the outside of the lumen, flush it with heparin, clamp the line above the hole, and tape sterile gauze around it, then come into the ER early Saturday morning so it could be repaired and he could have blood cultures taken and be given a single dose of IV Vancomycin (antibiotic). So Collin and I went to the ER this morning. We waited for quite a long time for the pediatric surgical team to finish with an appendectomy; then they came to see us. After making a few calls to central supply, the OR stockroom, etc., they determined the hospital doesn't have a repair kit for a double lumen catheter, only single lumen catheters. That the hospital doesn't have a repair kit for a double lumen catheter that is commonly used in hem/onc patients, that was put in by them, whether they don't stock it or it doesn't exist, blows my mind. Since the only other option would have been to take Collin to the OR and surgically replace the whole catheter, they told me to keep it clamped and not use it, and then talk to our oncologist at our clinic appointment on Monday. After being there for four hours, I was ready to leave at that point, but they wanted me to wait longer to make sure that we didn't need to have the IV dose of Vancomycin. I waited about fifteen minutes longer, and then told them I wasn't waiting anymore, since I had already wasted four hours of my time for no reason, it would have to be infused over two hours, the broken line couldn't be used since it couldn't be repaired, and the surgical attending didn't feel it was necessary. They had me wait another minute, and finally got the answer that it wasn't necessary, but they were to draw a blood culture before we left. Finally we were able to leave, but I was very annoyed. The surgical attending didn't seem to feel it was a big deal that we were down to one lumen if the Broviac is only being used for blood draws, but I had always been told that the lumens could be repaired when they got holes in them (which isn't unheard of for something that is used so much), and clearly the hem/onc doctors and nurses have seen them repaired before. Since Collin is only a month past transplant and has only been home for a week, and if he gets an infection that he needs to be hospitalized for, having only one lumen could make things difficult, so to me it's important.

To make matters more irritating, when I disconnected his feeding pump and flushed the feeding tube this morning in the ER as we waited, I found a leak in the end of that tube as well. It is the area of the tube that is often held kinked when giving multiple syringes of medication so that the medicine doesn't leak back out as one syringe is taken out of the tip of the tube and the next one can be inserted. Again, it's a tube used hard multiple times a day for a long period of time, so it's not surprising. It was just one more thing to deal with, so when we got home I took out the old feeding tube and replaced it with a new one. At least that was an easy fix.

On a more positive note, Collin has been crawling all around at a pretty fast clip. Last night there was a trail of toys all over the floor that he had explored and played with, and it made me smile. He's laughing a lot, especially when he's playing with Neya, and it's one of my favorite sounds!

Wednesday, November 17 - Day +35

As we left the hospital Saturday, the nurses lined the hallway and showered Collin with confetti. I was holding it together pretty well until then, but suddenly it hit me-we were really going home! Honestly in April, as our world fell apart, and many times along the way, it didn't feel like we'd ever make it to this point. I was overjoyed to be taking Collin home. He was pretty excited too; when I put his shoes on and put him in his stroller, he started shaking with excitement. As we walked down the hall, he was waving goodbye to everyone, and shook with excitement as he pointed to the elevator. It was a joyful sight!

We've been home for five days now. Getting home, unpacking and putting things away, getting organized, getting into a routine, meeting Collin's care needs, and trying to take care of normal household chores has been challenging. I am so thankful that my Mom was here to help; I don't know how we would have survived without her! As much as I wish we could go back to the way things used to be now that we're home, it isn't possible. It's a new "normal" for us now.

Here is an idea of our routine since coming home:

6:00 am-wake up, get myself ready for the day
7:00 am-disconnect the TPN (IV nutrition) from Collin and flush both lumens of the Broviac
-get Collin dressed and ready for the day
-wake Neya and get her dressed and ready for the day
8:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
-breakfast for Neya
-pack lunch for Neya
8:30 am-Neya to bus stop
8:45 am-prepare and give Collin his morning meds, and disconnect feeding pump (oral nutrition)
-breakfast; try to get Collin to eat something
-clean up from breakfast
10:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
12:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-lunch; try to get Collin to eat something
12:45 pm-prepare and give Collin his afternoon meds
1:00 pm-take TPN and vitamin vials out of the fridge to come room temperature 4-6 hours before use
2:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
4:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-help Neya with homework
4:45 pm-prepare and give Collin his early evening meds
-get feeding pump ready for the night, connect and start 16 hours of tube feeds
5:00 pm-get TPN ready for 12 hour infusion
6:00-put antibiotic ointment in Collin's right eye for the corneal abrasion
-dinner; try to get Collin to eat something
7:00 pm- connect IV pump and start 12 hour TPN infusion
-sponge bath for Collin
-shower for Neya
-shower for me
8:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-prepare and give Collin evening meds
-kids to bed

Between my mom and Bill, they have been taking care of most of Neya's needs, straightening up the house, doing laundry, and preparing meals. At any time throughout the day, I also have to clean up multiple episodes of vomit and/or diarrhea, keep a toddler occupied and happy or get him to take a nap, handle temper tantrums, and fit in therapy, ophthalmology, clinic, and/or home nurse appointments. My mom and I were joking (sort of) that we need a house keeper like Alice from the Brady Bunch for a short time. Things will get easier as we don't have to use TPN anymore, or do the eye ointment, or clean up vomit/diarrhea, etc. By the time I get into bed at night, I can't keep my eyes open for long; and even once I fall asleep, it doesn't last all night because Collin usually wakes up at least once or twice. And as frustrating and overwhelming as things can get, I know that if I were one of the moms who doesn't get to bring their child home, I'd give anything to have all of this chaos to deal with, so I'll keep it and do the best I can. But please bear with me if it takes me a while to return a phone call, answer an email, update the blog, etc. Thanks!!!

Thursday, November 11 - Day +29

After I learned of Tuesday's loss, I couldn't bring myself to write an update that night that included discussion about our plans to go home. It's not right that a mother had to leave here knowing her son would never be home again. Whenever I hear of another child who loses the fight against this evil thing called cancer, it sends me into a tailspin. I feel this sense of sick dread. It's heartbreaking and depressing. It's my biggest fear. And yet, despite the fact that the world has come crashing down around someone, life keeps moving for the rest of us. It just isn't fair.

Over the last week Collin has been more playful and verbal than he was as he recovered from the VOD. His sense of humor has returned, as has his ability to throw big dramatic temper tantrums. But (most days...I'm only human) even the behaviors that may have gotten under my skin at one time now make me smile, because I'm just thankful that he is still here, and able to do more than just lay in a bed. 

Collin's labs have been exactly where they should be. His white blood cell count is increasing on it's own, which means the stem cells have engrafted and are doing their job. His blood clotting factors have returned to normal, as have his liver functions. He has been tolerating the tube feeds a little better the last few days. Instead of rushing to increase the tube feeds to a volume that would sustain him and allow us to stop the IV nutrition prior to discharge, it was decided he can go home on some IV nutrition and we can continue to increase the tube feeding a little slower so he won't throw up as much at home. Twelve hours of IV nutrition and tube feeding around the clock will make some things more challenging, but it's time to get Collin back home into his own environment so he can keep moving forward. Although he will be ready for discharge by tomorrow afternoon, logistically it will be easier for us to go home Saturday morning, so that's the plan. 

It's hard to believe this is our last scheduled admission; in April it seemed like this was an impossible dream, and that it would take forever to get to this point (if we would even reach it at all), but looking back, the last seven months have really gone by quickly. And in that time, I have met so many amazing people who have become like extended family-the doctors, nurses, therapists, aides, social workers, unit secretaries, and housekeepers who have been beside us in our darkest days, and have shared our joy at each improvement, no matter how small. I know they get payed to do the jobs they do, but no amount of money can make anyone genuinely care like they do. Thank you hardly seems like enough, but I don't know what else to say. We have been so blessed throughout this journey.

Tuesday, November 9 - Day 27

My heart is heavy as I write this. The cancer warrior I wrote about on Sunday got his angel wings tonight. He was too young, his life is over way too soon. Please keep him and his family and friends in your prayers. Hug your children, and anyone else who is important to you, and always remember to tell them how much you love them.

Sunday, November 7 - Day +25

The last few days have been fairly quiet. Collin's eye is bothering him a whole lot less now that it is sutured. I'm not even sure he realizes that it is sutured; the corner that his eye turns to is still open, so he can still see. He's not trying to rub his eye as much as he was, so we take the elbow immobilizers off for periods of time, especially when we are right next to him and can stop him if he does try to rub his eye.

In order for Collin to be discharged from the hospital, he has to be able to tolerate tube feedings so that he can be nutritionally supported at home. His stomach hasn't had anything in it for weeks, so the process of getting him off the IV nutrition and back onto oral nutrition is a bit of a challenge. Prior to this hospitalization, Collin was getting two cans of formula overnight, a total of 500 mL, at a rate of 50 mL per hour, as well as whatever he ate during the day. Right now, Collin has little interest in eating, possibly because his ability to taste has been affected by the chemo since it kills off taste buds. So, until his interest in eating returns, Collin will again get the bulk of his nutrition through his feeding tube. The tube feeding was started at a slow 10 mL per hour around the clock to get his stomach used to being used again, and then it is slowly increased every few days. Today it was increased to 15 mL per hour. Unfortunately, vomiting is a regular occurrence as his stomach re-adjusts. It can happen anytime, without warning. I'll spare the details, but I am so hoping that by the time we go home, the vomiting will not be an issue, either because his stomach has adjusted, or the anti-emetics are helping!

There is another warrior on this unit that needs a lot of prayers, the son of a friend of my in-laws. He should be enjoying his senior year of high school, but instead he is here fighting for his life. He's not doing so well, and probably doesn't have much time left. Please keep him and his family in your prayers as they face the unthinkable. Thank you.

Thursday, November 4 - Day +22

After my last entry Monday night, Collin's fever increased a bit, and he was put back on antibiotics. He also had a few episodes of diarrhea over night, so another stool culture was sent, which came back positive for c-diff yet again (he just got over his third bout of c-diff, this is now the fourth time he's had it). All of the blood cultures came back negative for infection, so the antibiotics were stopped yesterday.

On Tuesday, an ophthalmologist came to look at Collin's right eye because the corneal abrasion didn't seem any better even though he had been on the antibiotic eye ointment for seven days. Since the eye does not blink or close all the way when Collin is sleeping, it has become too dry to heal, despite using ointment and eyedrops to lubricate it. The abrasion is pretty deep, and if it doesn't heal soon, it will start to develop scar tissue that will permanently impair the vision in that eye. The ophthalmologist that came Tuesday wanted to consult the other ophthalmologist that has seen Collin in the hospital before making a decision about how to treat the abrasion because of the turning in of the same eye. Both doctors have examined Collin, and have decided to suture his right eyelid part-way closed to allow the abrasion to heal. By closing the eyelid halfway, there will still be a tiny space at the inside corner of the eyelid for the eye to see out of; that way when we patch Collin's left eye, the right eye will still be able to see enough that Collin's brain won't ignore the eye, so that there will be some functional vision left when the surgery is done to help the eye turn back out (unfortunately that surgery cannot be done at the same time, because it causes inflammation which won't help the abrasion heal, and since Collin's immune system is still weak, any non-critical procedures must wait due to risk of infection). If suturing the eye partly closed is not enough to help the abrasion heal, they may have to sew the eye completely closed; but if that happens, there will be no vision left in the eye once the sutures are removed; the brain will ignore the eye after just a few weeks of not being used at all. Corneal abrasions are very painful, and Collin has been very bothered for over a week now. In order to keep him from rubbing his eye, he now has immobilizers on both arms that keep his elbows straight so that he can't reach his eye with his hands. Of course he can't do much of anything else either with the immobilizers on, and I don't want him to lose any gains he's made in other areas. He can't play, hold on to a walker, or feed himself, etc. with the immobilizers on, but if they are taken off, he quickly tries to rub his eye. The entire situation is very frustrating, and again I'm left wondering why Collin has to be thrown so many roadblocks on his road to recovery. I knew and accepted that hearing loss from the chemo was a possibility, but possible vision impairment or loss never entered my mind. I am hoping for the best outcome possible at this point, and I'm sure he can learn to adapt to having functional vision in only one eye if it comes to that. But none of this is what I wanted for my child. It's just not fair.

Despite the eye pain, the immobilizers on his arms, four small episodes of vomiting, and a tiny fever that landed him back on antibiotics yet again, Collin had a great day today. He was more vocal than he's been in a few weeks. He played with his nurses and therapists. He smiled and laughed a lot, and had us doing the same. The scan of his liver showed the blood flow is now going in the right direction. He is almost back to his pre-VOD weight. His labs are good. The attending physician today said there's not much keeping him in the hospital now; as soon as he is able to tolerate nutrition either by mouth or feeding tube instead of intravenously, he can go home. So this evening his tube feeds were re-started with the hopes he won't have a lot of vomiting as his stomach readjusts to being filled. With any luck, maybe we can go home by the end of next week!

Monday, November 1 - Day +19

Overall, today was a good day. Collin's morning dose of Risperdone was held to see how he would be without it; he was more awake, alert, and interactive today. He smiled, laughed, played a little, and watched some of his favorite music videos. And, he didn't have any of the tremors he had last Monday. He had a little juice from a spoon this morning, but the rest of the day didn't seem to have any interest in eating or drinking anything. His dose of Morphine was reduced, and he still seems comfortable. His weight and belly circumference have come down a little more, and most of his labs looked pretty good today. Unfortunately tonight he is running a low grade fever, so the usual blood cultures will be drawn, and he'll most likely be started back on the IV broad-spectrum antibiotics.

Sunday, October 31 - Day +18

The last few days have been medically boring, which is the best kind of day you can have in the hospital. Collin sleeps a lot day and night, which I think is in large part due to the Risperdone, but he needs the rest, so right now it's a good thing. The tremors seem to have stopped for the most part; but we don't know if they are really gone, or if the Risperdone has stopped them. He is off the oxygen completely, and is having no trouble maintaining his O2 sats. He is slowly losing the extra weight he gained because of the fluid in his abdomen, and his abdominal circumference is also slowly dropping. We had to bring size six diapers in from home because the size fives he was using suddenly didn't fit when his belly was so distended, and even then the size sixes barely fit; now they are fitting more normally. He has been afebrile for days, and is off the IV antibiotics. His white blood cell count has dropped to a more normal level, which also means he is free of infection. He has started to take some juice off a spoon, and is keeping it down better than he was a few days ago. He still requires occasional transfusions of blood products, mostly packed red blood cells or platelets, but they are not as frequent as they were. His ammonia level is slowly dropping, as is his bilirubin level. He may have another doppler of his liver some time this week to check the direction of the bloodflow through it, and if that shows improvement, he may not need the full twenty-one day course of Defibrotide. He has stopped rubbing his eyes as vigorously as he was, and although I'm sure his right eye feels better as the corneal abrasion heals, another thought occurred to me yesterday: all of the tiny eyelashes (and eyebrows and hair) that had started to grow are gone again, and maybe the eyelashes were itching his eyes as they fell out. Now that I think about it, I think the same thing happened the first time he lost his eyelashes in May or June. And surprisingly in the last two days, we have noticed even more of an improvement in his left eye; it seems to be turning out to the center more and staying there for longer periods of time. It makes me wonder how much his vision has changed (if at all), because now he puts his little hand up to his forehead sometimes, almost like he may have a headache or feel dizzy. Oh how I wish he could tell us! Overall, he seems to be making small improvements every day. I feel a lot better about things than I did in the beginning of the week, and have even managed to get some sleep. Thank you all for your prayers, support, encouragement, and well wishes! You have helped hold me up when I didn't think I could stand anymore!

Thursday, October 28 - Day +15

Saturday night, Collin had a small nosebleed; his nose was very dry because of the oxygen, and he was constantly rubbing his eyes and nose when he was awake. His platelet count was also low, so he had another platelet transfusion overnight. We also tried a dose of Benadryl, which really seemed to help alleviate the itching of his face.

On Sunday, Collin rested quietly for most of the day. He wasn't very verbal, and hadn't really tried talking since his visit to the PICU. He spent the day either sleeping, or laying in the bed staring. His blood pressure was low, and his heart rate was elevated, but this was likely due to the diuretics. Diuretics cause the kidneys to add more sodium to the urine which will then be excreted by the body. When the sodium is excreted it takes along extra water with it as well. This reduces the amount of water in the blood stream, which means that there will be less pressure exerted on the artery walls. Therefore blood pressure will be lower, which in turn can raise the heart rate because the heart works harder to pump a smaller volume of fluid. His resting heart rate was elevated, and when he got excited, his heart rate increased dramatically. Increased heart rate can also be a side effect of the Defibrotide that is supposed to help Collin's liver, so we were watching it carefully.

Very early Monday morning, Collin woke up and was unable to be still. He had tremors which reminded me of how someone with Parkinson's disease may look. The tremors continued all day, and Collin was not able to get any rest. Since we were not sure what the cause of the tremors was, the Defibrotide was held, and some tests were ordered to try to pinpoint a reason Collin was unable to be still. A chest x-ray was done to make sure the Defibrotide wasn't causing any bleeding in his lungs; thankfully his lungs were fine. By late Monday afternoon, Collin was unable to sit up on his own without falling over, and at one point he could not even hold his head up straight. The attending physician came to see Collin again, but wasn't sure what was causing the tremors or weakness. By that point I was terrified; no one had any idea what was wrong with Collin, and Collin seemed distressed. Suddenly, this child who has been through so much already seemed to be getting a lot worse, quickly. I wondered what we had done to him that could have caused this reaction, and I had a bad feeling that he wasn't going to survive whatever this was. The attending physician asked the nurse practitioner if Collin's ammonia level had been checked. It hadn't been, so they drew blood to check the level. It came back elevated, which indicated that Collin's liver was not able to filter his blood properly, and toxins were building up in his body. The attending physician felt that hepatic encephalopathy was a possibility. Hepatic encephalopathy is a worsening of brain function that occurs when the liver is not able to remove toxic substances in the blood, and it may occur suddenly when damage occurs to the liver. Ammonia, which is produced by the body when proteins are digested, is one of the harmful substances that is normally made harmless by the liver. Many other substances may also build up in the body if the liver is not working well, and they can cause damage to the nervous system. So, changes were made in Collin's medications; medications that are normally broken down by the liver were stopped, he was given extra potassium, and his TPN formula was changed to have less protein in it. Tylenol was held unless he needed it for a very high fever, so to try to alleviate the low-grade fevers that Collin was having, we used cold wet washcloths on his forhead and the back of his neck. He had another CT scan, but that was also negative for any findings. While he was sedated for the CT scan, an ophthalmology resident came to examine his eyes, because they were so irritated from constantly being rubbed. She found a corneal abrasion on his right eye, and prescribed an antibiotic ointment for his eye. I don't know if Collin has been rubbing his eyes because the corneal abrasion was causing him discomfort, or if the constant rubbing caused the corneal abrasion.

Monday night was not very restful; Collin was still having twitching or tremors even in his sleep. On Tuesday, he seemed more agitated when he was awake, and would yell or cry at times. The medical team decided to consult a neurologist. She examined Collin and decided to order an MRI to look at an area of the brain that doesn't show up well on a CT scan to rule out a bleed or a stroke. On Wednesday, we were told the MRI was negative, and the neurologist talked about doing an EEG to rule out seizures. She felt the likelihood of seizure activity was very low, and since putting on the EEG  probes requires scrubbing the head with exfoliant, I didn't think an EEG was a good idea; Collin bleeds easily right now and is at risk for infection, so leaving him with a head full of abrasions wasn't something I wanted to consent to. 

The team also consulted a gastroenterologist to see what he thought. He agreed Collin has veno-occlusive disease, but did not feel he had hepatic encephalopathy. He said while Collin's ammonia level was elevated, it was not alarmingly high, and Collin's other liver function numbers were turning around. Collin had had a doppler ultrasound of his liver last week which is what showed the blood flow backing up in the liver, but the gastroenterologist wanted to have another ultrasound of the liver to get a look at the amount of injury to the liver tissue. The ultrasound was done late yesterday afternoon. The gastroenterologist told us today that the ultrasound showed Collin's liver is enlarged, and that the whole liver is injured. While that sounds bad, he said it's actually better than just being damaged in one area, because it supports the VOD diagnosis, and doesn't look there is anything else going on. He said that although it will take some time, the liver will heal and there won't be any permanent damage.

Last evening, Collin had another transfusion of a blood product, this time cryoprecipitate, which contains a protein called Fibrinogen that plays a key role in blood clotting. Fibrinogen is manufactured in the liver, but since Collin's liver isn't functioning quite right, his level was low; since he has had a few nosebleeds, it is important to make sure his blood can clot properly.

On Tuesday night, Collin was started on Risperdone to see if it would help calm the tremors. It has seemed to help, but also makes Collin drowsy, so this morning his morning dose was lowered so he would be less drowsy during the day. It has helped Collin rest more peacefully at night, and last night I got my first full night's sleep in weeks. Today his IV antibiotics were stopped, because he has not had a fever for a few days, blood cultures were negative for infection, and his white blood cell count has dropped to almost normal, which means there is no infection present. His morphine has also been lowered since his mucositis has healed and he shouldn't be in any pain. We will watch closely to make sure he doesn't have or develop pain in his belly, which could indicate that the extra fluid in his abdomen has become infected. Collin has been off oxygen for twenty four hours now, and has had no problems breathing. His ammonia level has not increased, and his other blood levels are normalizing. His extra weight from the fluid is slowly coming down, as is his abdominal circumference. The speech therapist tried getting Collin interested in eating or drinking a little something today, but because the fluid in his belly is probably pushing against his stomach (and other organs) and making it smaller right now, Collin isn't hungry and had no interest in eating or drinking. We will just keep offering tastes of food or drink, and he will let us know when he is ready. 

Overall, it seems like Collin is making small improvements every day, just like he always has. The VOD has added a few weeks to our hospital stay, but as long as he continues to improve, nothing else matters. Please keep praying for Collin, little Caiden, little Sean (two other toddler cancer warriors on the unit), and all of the other children who unfairly have to battle this horrible disease.        

Saturday, October 23

9:15 pm

We are back in our room on west hall, and Collin is resting peacefully. I think I may actually get some good, restful sleep tonight!

Saturday, October 23 - Day +10

Collin had a good night and rested comfortably for most of it. Early this morning he woke up crying and had some extra Morphine. After looking at his labs and seeing his white blood cell count, I'm thinking he's having the bone pain from Neupogen and engraftment. He's off the Neupogen now, but his marrow is working hard to push out the white blood cells; I think they have doubled every 12 hours or so. His belly girth is a cm smaller, and he's had some really wet diapers after this morning's dose of Lasix. And the Defibrotide is infusing right now! His kidneys are doing fine, and his liver is slightly improved...his bilirubin is down a tiny bit which happened last night on its own, and it's still within normal limits. He is on very little O2, and they will try again to see if he can maintain his sats above 94 on room air today. He was smiling at me this morning, and wanted to sit up. He is very alert, looking around right now, and seems comfortable. The nurses here have been as wonderful as they were in April, and the PICU docs just rounded on him and I sat in on it. I was able to follow along with no problem, and when I asked questions I think I sounded like I know what's going on. His nurse this morning asked me if I had a medical background! I said just on-the-job training...

We will be going back home to our family in the hem/onc wing later today! :o)

Friday, 9:40 pm

There's not much new to tell right now, which is a good thing. Collin requires a lot less oxygen, and is breathing much easier. He is sleeping, and seems comfortable when he sleeps. When he wakes, it's a different story; he cries and is very upset. I imagine his belly is uncomfortable, and I'm sure he doesn't like having his hands restrained to the bed (so he doesn't pull off the oxygen). He also knows he's in a different place. Luckily I seem to be able to calm him down without too much difficulty, and he goes back to sleep.

Some of his medications have been changed or stopped in preparation for the Defibrotide. At this point Collin is NPO, which means he is not allowed to eat anything by mouth. This is so that his liver isn't taxed further by having to help with digestion, along with the fact that eating is probably the last thing he'd want to do with his belly being so uncomfortable. He will remain NPO for a few weeks, as this condition will take at least that long to resolve, even once the Defibrotide is started. He is still receiving the TPN (IV nutrition) at a slower rate. Luckily he shouldn't have any permanent liver damage, and I was surprised to see that his bilirubin level had gone down a smidge instead of up. He is still getting the diuretic intermittently, and he has had some really wet diapers. His belly girth (59.5 cm!) has not changed since this morning; at least it hasn't gotten any bigger. He is stable for now, and hopefully tomorrow he will be able to return "home" to his room, which luckily has so far been held for him to come back to. I feel like there is a plan in place, and I feel a lot more confident that this is going to turn out ok. And it's amazing what a short nap and a shower can do for the soul; I feel like a new person! Thank you again for all of the love and prayers that have been sent our way!

Friday, 12:55 pm

UPDATE:

We just found out the drug was approved!! It will be sent by courier from CHOP and should be here tonite or tomorrow. Furthermore, they may re-think the study criteria for children, because they have had the request before. Thank you everyone for your prayers, love, and support!!! We are forever grateful!!! I will continue to keep you updated...

Friday, October 22 -Day +9

Wednesday Collin seemed to be doing a little better. He was afebrile all day, which was a welcome change. His diarrhea slowed down. He received another blood transfusion and another platelet transfusion. He rested a lot, but did have one or two times when he sat up for a bit and was interested in playing. When I weighed him in the morning, his weight had increased by .6 k in 24 hours, which is 1.32 lbs. He was also puffy looking. This meant his fluid output was lower than what he was taking in, so he was given a dose of Lasix, a diuretic, to help him pee more to get rid of some fluid. He also was switched to a different anti-fungal drug instead of the one that had caused rigors and possibly some of the increased temperatures (referred to as "shaking and baking") the day before. 

Wednesday night before I went to sleep, I thought Collin felt warm when I changed his diaper. Sure enough, he had a low grade fever and was given Tylenol. Around 4:30 Thursday morning, he woke up crying. I checked his diaper but it wasn't wet. I was trying to comfort him, and his nurse came in. She asked about his diaper, and I told her it was dry, and I figured someone had changed him. She said she had changed him a while before then, but that diaper hadn't been wet either. She had let the covering resident know, and the resident had contacted the covering physician, but he didn't feel it was necessary to order another dose of diuretic at that time. So at 4:30 am, Collin still had not peed much, he was so puffy that his belly was hard and his bellybutton was sticking out, and he was having some difficulty breathing. We weighed Collin, and his weight had increased another .9 k, which is almost 2 lbs. His oxygen level was also decreased, and he seemed to be having slight difficulty breathing. The attending physician was notified, and he finally ordered a dose of Lasix, and X-Rays of Collin's chest and belly.  

Later in the morning, when the attending physician came by, he said the X-Ray showed haziness in Collin's right lung, which could have been either from fluid or infection. He ordered more Lasix to try to help Collin's system get rid of some of the fluid it was retaining. Another chest x-ray would be done Friday morning to see if the right lung had improved after some of the fluid was reduced. The doctor also ordered a doppler ultrasound study to be done on Collin's liver.  Finally, he added a steroid and a nebulizer treatment to reduce the upper airway inflammation that was evident when Collin was breathing. He felt this was because Collin's white blood cell count had jumped overnight, so there were white blood cells, whose job it is to fight infection, attacking the mucositis in Collin's body, which can cause inflammation.

The nebulizer treatment and the steroid seemed to help Collin's stridor. He was put on oxygen and we switched the humidifier that we had rigged over his bed to oxygen from regular air to try to prevent his from getting too dried out. He was doing well and maintaining his oxygen saturation level throughout the day. The liver ultrasound showed that Collin's blood was going into his liver, but instead of going out of the liver after being filtered, it was backing up and seeping out the way it came in. At that point he had all but one symptom of VOD, or veno-occlusive disease, a complication from the high dose chemo and stem cell transplant.

From Wikipedia:
"Hepatic veno-occlusive disease or veno-occlusive disease (VOD) is a condition in which some of the small veins in the liver are blocked. It is a complication of high-dose chemotherapy given before a bone marrow transplant (BMT) and is marked by weight gain due to fluid retention, increased liver size, and raised levels of bilirubin in the blood. The name sinusoidal obstruction syndrome is now preferred if VOD happens as a result of chemotherapy or bone marrow transplantation.  In the BMT setting, VOD is felt to be due to injury to the hepatic venous endothelium from the conditioning regimen."

Basically, the high dose chemo injured the vein walls, which allows fluid to leak out of the veins into open spaces, called third spaces, in the body. It was likened to a hose that has holes in it; when water goes through the hose, it comes out of the little holes instead of going all the way through the hose like it's supposed to. This fluid is leaking into Collin's abdominal cavity, which is putting pressure on his lungs, making it difficult to breathe. The blood vessels that carry blood through the liver become swollen and blocked. Without a supply of blood, the liver cannot remove toxins, drugs, and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness in the liver area. The kidneys may retain excess water, causing fluid to build up in the body and swelling in the legs, arms, and abdomen. In severe cases of VOD, excess fluid in the abdominal cavity puts pressure on the lungs making it difficult to breathe. Symptoms of VOD include rapid weight gain, swelling, jaundice, an enlarged liver, pain or tenderness in the area of the liver, and accumulation of fluid in the abdominal cavity (called ascites).

There is no actual cure for VOD. The medical team tries to prevent more serious complications, which can include kidney, heart and lung failure, and even death. Collin has all of the symptoms but the jaundice. His bilirubin level is slowly climbing, but is still within normal limits. There is a drug called Defibrotide which can successfully treat the VOD over time. While the drug has been used in Europe for twenty some years, it has not been approved by the FDA for use in the US. The drug company that makes it is performing clinical trials, and Collin meets all the criteria for the trial but one: his bilirubin level isn't high enough yet. So at this point the only thing we can do is manage the symptoms he has now; oxygen to help him breathe, diuretics to help get rid of some of the fluid, pain meds to keep him as comfortable as possible, and possibly having to tap his abdomen to drain some of the fluid out. The problem with tapping his belly is the risk of infection or bleeding; his immune system is still very weak, and he requires regular platelet transfusions to help his blood clotting abilities so he doesn't bleed to death. Once his bilirubin reaches a certain level, he would qualify for the study and could start the drug. The medical team is going to call the study coordinator and ask if an exception can be made, but I've been told not to get my hopes up that they will allow Collin to have the drug before his bilirubin reaches the required level. I'm praying for compasison, because it seems ridiculous to wait until he gets worse when we know he's headed that way anyway.

So last night, Collin was maintaining his oxygen saturation level on oxygen one minute, and then that changed in an instant. Despite oxygen his sats were dropping, and nothing we did was increasing them. Collin's nurse called for a rapid response, and within a minute or two there were twenty different people in his room assessing Collin. He was rushed back to the pediatric intensive care unit where they are better equipped to handle such an emergency.

The team finally got him stabilized, and another chest X-Ray was done. This showed marked improvement in the haziness that was seen yesterday. This morning when the transplant doctor stopped in, he said they are trying to get the drug, but until they can, either out of compassion or because Collin's bilirubin goes high enough, they will do everything they can to maintain Collin's condition and prevent him from getting worse. At this point there is little hope the condition will turn around on it's own. So far, there has not been permanent damage done to Collin's liver. At tnis point, the condition isn't likely to be fatal, but the doctor said he won't sugar-coat things and that it could head that way, but he will let us know if things are headed that way. The transplant doctor, Collin's oncologist, and his hem/onc nurses have seen kids in worse condition than Collin is in survive, so I am trying not to lose hope.

After rounds this morning, the plan is to keep Collin in the PICU another night. There are many calls into the people in control of the Defibrotide; it seems they are preparing to ship the drug from Dallas so that it is here when it's needed, whether they allow him to have it early or his bilirubin level gets high enough. At the rate the level has increased so far, it probably won't be long until it's high enough to qualify for the trial anyway. I will do my best to post updates as I have them.     

Tuesday, October 19 - Day +6

Well, not long after last night's entry, my hopes for a peaceful night were dashed. Collin's fever went up to 104.4 despite a dose of Tylenol an hour earlier, and his nurse got him an ice pack to lay on to help bring the fever down. Later, he started rubbing his nose and eyes, and wouldn't stop. I wondered if he was very dry because of the dry hospital air and the Benadryl, so we hung a makeshift humidifier over his bed, and gave him lubricating eye drops and saline nasal spray to try to make him less itchy, but they didn't seem to help. His eyes were red and puffy, and he ended up with some bruising between the inside of his right eye and the bridge of his nose. As it turns out, his platelet count had plumeted, which caused him to bruise very easily, so he had another platelet transfusion this morning. I requested a few doses of Morphine throughout the night so that he wasn't too uncomfortable, and this morning he was put on a Morphine pump. I also learned this morning that stool cultures came back positive for C-Diff, so he was started on another antibiotic to treat that infection.

Today, Collin's fevers continued, and he was also given an antifungal drug called Abelcet. The drug was given via IV infusion over two hours. During the two hour infusion, his blood pressure was taken every fifteen minutes. About halfway through the infusion, he developed extreme shivering/shaking called rigors, and was given four doses of Demerol to get the reaction under control. If he gets the drug again tomorrow, he will be given Demerol before and during the infusion to hopefully prevent the reaction; I am hoping that his blood counts will miraculously increase over night so that maybe he doesn't need to get another dose of the drug. Then shortly after the infusion was complete and the rigors stopped, his temperature went up to 104.7, and he started to shiver and shake once again. Another dose of Tylenol and cold washcloths on his forehead and the back of his neck helped get the fever under control.

I haven't slept well since we were admitted, and the last twenty four hours were no different. I'm utterly exhausted. While it is very hard seeing Collin so sick after he's been doing so well, I know that in a few days he will start to turn around again, just like he's done every time before this. He is such a fighter, and he is stronger than I will ever be.

Monday, October 18 - Day +5

Collin's fever has continued to come and go since my last blog entry; this afternoon it was 103.5. The mucositis is ugly. He continues to have diarrhea, and despite being changed as soon as he goes and being slathered with heavy-duty diaper cream, his poor little bottom is so red and sore that when I go to change his diaper, he shakes his head and says "no." Unfortunately today he had a number of episodes of vomiting mucus, and we have to suction his mouth out when he vomits to help get the mucus out. Tonight when I did his mouth care I saw that the inside of his mouth was bleeding, and almost looked like it was peeling. He is not able to eat anything by mouth because it hurts too much, so he is getting IV nutrition. His fast growing cells are definitely being sloughed off, which also means that the tiny bit of peach fuzz hair and eye lashed that have started to come in will fall out soon. Yet despite obviously feeling pretty crappy, Collin still manages to smile and play every so often. He is so incredibly strong, and I am continuously in awe of him. As I type this entry, Collin is resting peacefully with the help of Morphine, Benadryl, and Ativan, so I am going to take advantage of that and get some rest myself.

Collin turned 22 months old today!

Saturday, October 16 - Day +3

Collin has had a fever on and off throughout last night and today. He is on the broad-spectrum antibiotics, and is getting Tylenol for the fevers. Despite the fevers, his day was better than I expected it to be. His mouth doesn't seem to be any worse, and he didn't seem to be uncomfortable or need Morphine today. He still has some diarrhea, but no vomiting. He ate a few bites of food for breakfast and dinner today, and had short periods of time when he wanted to sit up and play with toys. Overall he didn't seem any worse today than he did yesterday; I am surprised but grateful!

Today I met the mother of a beautiful little boy named Caiden, sixteen months old, who is undergoing his first round of chemo and having a rough time. Please keep him and his family in your prayers!

Friday, October 15 - Day +2

Around 12:30 Thursday morning, Collin woke up a little fussy, and then I heard him fill his diaper. As I was changing him, he continued to have diarrhea; I'd get him cleaned up, and he'd go again right away. Then as I continued to get him cleaned up, he vomited quite a large volume. I ended up having to bathe him and change all of his bedding. Then we had to change the dressing over his Broviac because it was smelly. I hated having to change the dressing so soon after it had been put back on Monday after the Thiotepa baths were done, because the skin on Collin's chest was so red and raw. It took three of us to accomplish the dressing change; one nurse to do the dressing, another to hold Collin's hands so he didn't reach up and touch the sterile field, and me holding a disposable chuck pad under his chin so he didn't vomit all over his chest. He did vomit again during the dressing change, and we were afraid he aspirated some of it into his lungs because of how he was laying (on his back) and because it took him a minute to get his breath. After we finally got the dressing changed and everything cleaned up for the last time, Collin was given more antiemetics to help with the vomiting, and his tube feeds were stopped. Two residents came up to assess him, and based on how his lungs sounded, they didn't feel he had aspirated any emesis.

Collin spent most of Thursday morning sleeping. Then a little before lunch time, he perked up, and when the lunch tray came, he wanted to eat. He ended up eating a whole bowl of chicken noodle soup and six saltines. After he ate, he went back to sleep, and later was sitting up in bed playing. Then out of the blue, he vomited again, pretty much everything he ate for lunch. His oncologist felt the vomiting and diarrhea may have been caused by the stem cell preservative, not necessarily mucositis yet. In the end it doesn't matter what the cause was, it just stinks to see Collin sick like that.

Over Thursday night into this morning, Collin continued with the diarrhea, so last night wasn't restful either. Today the diarrhea had some blood in it. He had received platelet transfusions Wednesday and Thursday morning, as well as this morning, and because of the blood in his diaper this afternoon, he received another platelet transfusion this afternoon. The frequent need for platelets is expected after transplant, so at least I'm not surprised by all the transfusions.

Collin has now developed mouth sores (which he's never had before), and is unable to eat even though he may be feeling hungry. Tonight he was started on TPN, the IV nutrition he was on in the first round of chemo back in May. He had a dose of Morphine this afternoon, and will probably need to be on a continuous Morphine drip very soon (mucositis has been described as a mouth full of canker sores, and a sunburned GI tract). He is drooling a lot because of the mouth sores, and is sounding more congested. I have been told that the mucositis is usually at it's worst around days four and five after transplant, so I expect this weekend will be rough. Collin also developed a fever tonight, so the usual blood cultures, etc. will be done, and he is being started on antibiotics.

Wednesday, October 13...Day 0...Transplant Day!

Today was the big day, the day Collin would get back some of his stem cells that were collected on Memorial Day. The last five months of chemo, plus the mega high doses of chemo that Collin received last week, all led up to today. Without the stem cell rescue today, Collin's blood counts would not recover from the high dose chemo.

It was important that the stem cells not be transfused too early so that they were not affected by any of the chemo drugs, so Monday and Tuesday were "days of rest" between the last dose of chemo and the stem cell transfusion. Monday afternoon was the last of the every-six-hour baths (YAY!), and I also replaced Collin's feeding tube. Tuesday, Collin had a transfusion of blood platelets, which help the blood to clot. He also had great therapy sessions with the occupational and physical therapists.

This morning began with another transfusion of blood platelets, because despite yesterday's transfusion, his platelet count continued to drop. There was a lot of behind-the-scenes prep for the stem cell transfusion, which was scheduled to take place around 11:00 am, but our morning was pretty routine and quiet. Collin was assigned a nurse who spent most of the day in his room, to monitor his blood pressure and heart closely. A cart carrying a container that held the stem cells still frozen in liquid nitrogen, as well as a machine to thaw them, was wheeled into the room. Two of the attending oncologists, Collin's nurse practitioner, the nurse assigned to monitor him, and another nurse who was observing the procedure, all gathered in the room with us. Collin had already been pre-medicated with the usual Tylenol, Benadryl, and Zofran to prevent allergic reactions and nausea, and was hooked up to the blood pressure and heart monitors. The man who brought the stem cells to the room thawed them right there, and then the nurse practitioner injected them slowly into the IV line connected to Collin's Broviac. In less than ten minutes, the stem cell infusion was complete, and because the Benadryl made Collin drowsy, he slept through the procedure. There were no complications with Collin's blood pressure or heart rate, and other than the smell of the preservative the stem cells were stored in, which smells like creamed corn, there are no other lingering side effects from the procedure. Collin's breath and diapers should stop smelling like creamed corn in a day or two. Now we just wait for the stem cells to graft and help bring Collin's blood counts back up, and hope that he doesn't develop a bad case of mucositis over the next week. Thank you for all of the love and prayers that have been sent our way!
   

Sunday, October 10, Day (-3)

On Wednesday and Thursday of this past week, Collin received more Carboplatin. Carboplatin isn't as nauseating as other chemo drugs, so the days went pretty smoothly and Collin seemed to feel pretty well. On Friday, Saturday, and today, the Thiotepa and Etoposide were given. The Thiotepa is the chemo that is excreted through the skin, so Collin had to be bathed every six hours for the three days he received the Thiotepa, and then for another twenty four hours after the end of the last infusion of Thiotepa. We tried to come up with a bath schedule that didn't interfere with the hour he has to eat each meal, but unfortunately there was no way to avoid waking him in the middle of the night for a bath. The schedule we decided on was 3:30 am, 9:30 am, 3:00 pm, and 9:00 pm. Normally I try to have Collin in bed for the night by 8:00 pm, but I didn't want to wake him an hour after getting him to sleep, so I kept him up until the 9:00 pm sponge bath was done. After each bath, all of his bedding had to be changed, and Bill and I wore gowns if we were holding him to protect our skin from having prolonged contact with the chemo. The schedule has been draining on Collin and me; we are physically and mentally exhausted. The last scheduled bath will be 3:00 tomorrow afternoon, and then we can return to a more normal routine of earlier bedtime, fewer interruptions of sleep during the night, and one bath a day. Collin's skin is red and sore from the chemo and baths. The dressing over his Broviac had to be removed, so following each bath, the site had to be cleaned with Chloraprep and covered with gauze. The Chloraprep stings his skin, and we've had to be extra careful not to accidentally pull on his IV lines since there's not much of a dressing in place to help prevent the Broviac from being pulled out of his chest. Monday afternoon can't come soon enough.

Over the last few days, Collin's appetite has decreased. He seems interested in his meal tray when he sees it, but then doesn't eat very much. He has had some episodes of vomiting, and is on staggered doses of Zofran, Benadryl, and Ativan to help reduce nausea. The taste of some of his oral medications seems to make him gag and throw up, so it's getting harder to get him to take his meds. He is expected to start with mucositis in a few days, so Monday afternoon his feeding tube will be replaced before it becomes too painful to do so. At least then it will be easier to get his oral medications into him. Monday and Tuesday are days of rest (no chemo), and then on Wednesday he will have the transfusion of his stem cells that were collected on Memorial Day that will rescue his body from the effects of the high dose chemo he's received over the last week.

Tuesday, October 5, Day (-8)

Collin was admitted to the hospital yesterday afternoon for the high dose chemo and stem cell transplant round. I spent most of last Friday, Saturday, and Sunday working to get everything ready for the hospital. Collin and I live out of a suitcase so that we're prepared to go back to the hospital in an emergency, and I keep two bins of toys packed in the living room along with other hospital necessities like a highchair, etc. Even though the clothes in the suitcases were clean, I had to re-wash everything and then seal the clothes in plastic bags, and then clean the suitcases before I put the bags of clothes back into them. I also had to unpack the bins of toys and books, and wipe down the bins and all the contents with Clorox wipes, and seal the toys in the bins until we got to the hospital. Then once we got to the room, the outside of everything had to be wiped down before it could come into the room. The goal is to have everything as clean as possible since Collin's immune system will be so compromised after the chemo and stem cell rescue. The hospital preparation was exhausting, and on top of that I was trying to do some housecleaning and laundry so that I wasn't leaving the house a mess. Of course there is a lot more to do before Collin is discharged back home, but I am thankful that with the help of family and friends, everything will get done.

When I got Collin out of the car and into his stroller once we got to the hospital yesterday, the poor kid started shaking his head and saying, "no, no, no." He was definitely not pleased to be back, and had some major temper tantrums last night. He's been through so much and it's completely understandable that he would be upset, and I tried telling myself to be thankful that he has the ability to throw a tantrum. But the frustrating thing was that his first tantrum, which was because I cut up his hot dog and he wanted to pick it up and eat it whole, lasted a whole hour. I couldn't get him to calm down so I could safely feed him and not risk him choking, so he ended up missing dinner because his tray can't stay in the room longer than an hour because they don't want to chance bacteria growing on the food and making him sick. Later when he calmed down I got him something else to eat, but then something sent him into another tantrum, and he threw the food on the floor. He had to be hungry last night when he went to bed, but it's hard to reason with an almost-two-year-old.

Yesterday Collin was started on IV fluids, and then was given the IVIg. It was infused slowly so that he didn't have the scary reaction he had the first time he received the drug in June. Luckily everything went smoothly and he had no negative reactions. Today, he had his first infusion of Carboplatin, which ran over four hours. He tolerated it with no problems. Everything today went very smoothly; Collin was in a good mood, had great therapy sessions, ate well and took his medicine orally with no problems (his feeding tube came out in his sleep Saturday night, and as long as he ate well and took his medicine, we didn't have to replace it right away because he wouldn't be receiving tube feeds during the chemo. It will have to be replaced probably early next week before the mucositis starts so that it's not too painful to put back in). I hope tomorrow goes just as smoothly as today did!

Wednesday, September 29

Yesterday, Collin had another MRI to check his progress, and another lumbar puncture to make sure his CSF is still free of any cancer cells. A foley catheter was also placed while he was sedated so that his urine could be collected for 24 hours; the results of a creatinine clearance test will help the oncologist dose his upcoming chemo properly.

Today, Collin had another hearing test to monitor the effects of chemo on his hearing, and then we went to the clinic to have the catheter removed, return the consent forms for the upcoming hospital admission, and get the MRI results. The hearing test went very well, better than I expected; it showed Collin's hearing to be within normal limits in BOTH ears! Following the tumor resection, and up until today's test, his right ear has always shown some slight low frequency hearing loss, so I was very surprised to have different results today! The LP showed no signs of cancer cells in the CSF, which is what we expected. Then, the MRI showed "normal post-operative changes" and no evidence of disease! So, Collin is cleared for the next step in his treatment, the high dose chemo and the stem cell rescue. Our oncologist didn't expect anything less on the MRI, but if for some reason results would have been different, she said they couldn't go ahead with the next step, and we'd be having a different discussion. So we got the best results we could have hoped for all around today! It has certainly boosted my spirits!

This evening I had so much fun just watching Neya and Collin play together. They always have so much fun together, and it's always such a nice thing to see! The next few days will be busy with therapy appointments, and cleaning and packing the things we will take to the hospital. I'm making peace with the fact that I will get done what I can, and others will help with what I can't. We are so blessed to have so many wonderful people surrounding us! I have always said I never realized how many wonderful people my kids would bring into my life, and it still holds true!

Sunday, September 26

I spent the weekend cleaning the house, as it has to be cleaned very thoroughly for Collin to come home to after his next hospitalization. Saturday, Neya and I cleaned the basement playroom, and then I packed up any of Collin's toys from the living room that can't be easily wiped clean. I also thoroughly cleaned the refrigerator. Today, Neya and I cleaned her and Collin's bedrooms, dusting everything and vacuuming floors, curtains, and stuffed animals. Bill and I moved the washer and dryer to clean around and under them, and then I cleaned the insides as well so I can start washing all of the clothes that we will bring to the hospital. There is a lot more to do to get the house ready, and there's no way I will be able to get it all done by myself before going to the hospital next Monday; thankfully we will have help from family and friends over the next few weeks to get everything ready for Collin's homecoming. It's hard to ask for help with things I am used to doing myself, and the words "thank you" will never be enough. We are blessed to have such wonderful people in our lives!

Tomorrow, everyone has the opportunity to help find a cure for pediatric cancer by eating at Chili's. All day on Monday, September 27th, Chili's restaurant will donate 100% of their proceeds to St. Judes Hospital for cancer research. This is ANY Chili's in the U.S.! What a great reason to get out of cooking for the night, or get friends together for lunch. It is a fun and easy way to help make a difference for these children!

Wednesday, September 22

Collin was diagnosed five months ago today. In some ways I can't believe it's already been that long, and in others it feels like this journey has barely begun and that there is still such a long road ahead. Today we met with Collin's oncologist to learn about the upcoming round of chemo and the transplant. Tonight I am exhausted and overwhelmed. We learned about what to expect medically during the next round-the drugs, the side effects, the risks, etc. We also were given an idea of the things we'll have to do to prepare for admission to the hospital, but since I now have a meeting tomorrow where I will be given another binder full of information and details, I won't go into that stuff until tomorrow.

Collin will be admitted to the hospital in the afternoon on October 4, which is known as day -9. On that day he will receive intravenous gammaglobulin (IVIg), which is a blood plasma product that helps boost the body's immune system. The first time he received IVIg he had a very scary reaction during the infusion, but since then it is infused very slowly and he has had no problems.

Over the next three days (days -8, -7, and -6) he will receive the chemo drug Carboplatin, which will be infused over four hours each day. At high doses this drug can cause deterioration in hearing or kidney function, as well as deterioration in liver function. These side effects are rare; however it does cause nausea, vomiting, and diarrhea.

Over days -5, -4, and -3 he will receive two drugs, Thiotepa and VP-16, aka Etoposide. Thiotepa may cause mucositis resulting in mouth sores, inability to eat, and diarrhea. It will also cause temporary nausea and vomiting as well as loss of apetite. It causes temporary darkening of the skin with redness, soreness, and skin sloughing in some areas such as the buttocks, groin, back and armpits. This can last up to a month. Unlike the other chemo drugs that are excreted through the urine, the Thiotepa is excreted through the skin, so for the three days it is given and the two days following the last dose, Collin will need to be bathed every six hours. That is twenty baths in five days. Every time he is bathed, his clothing and bed linens will need to be changed as well. We will have to wash our hands before and after we touch him, and wear gloves to handle any bodily fluids. The VP-16, which Collin has had before, will also contribute to the mucositis, and can cause low blood pressure.

These three drugs together are expected to cause severe mucositis. Almost every patient who receives this therapy will be unable to eat and require IV nutrition and narcotics. The mucositis could potentially be so severe that the patient would need to be intubated to protect the airway, but the oncologist said she has only seen that happen once. The combination of the three drugs at high doses can also cause a form of liver damage, but they try to prevent this complication with the use of a low dose heparin drip and very close attention to fluid balance, and the oncologist does not expect this complication to occur. The drug regimen can also lead to multi organ system failure which is usually fatal, but this complication has almost been completely eliminated through modifications of the drug doses related to kidney function. Next week when Collin has his next MRI, he will receive a catheter through which we will do a 24 hour urine collection to test his kidney function. This test and a blood test will help them dose the chemo properly for Collin to prevent this outcome.

Days -2 and -1 are days of rest between the chemo and the transplant, to ensure that the healthy stem cells are not introduced into a toxic environment and damaged.

On day 0, October 13, Collin's stem cells that were collected on Memorial Day will be transplanted back into his body. The stem cells have been preserved and frozen, and will be thawed at his bedside and infused over an hour. Rarely the infusion of peripheral stem cells can result in breathing difficulties from clumps of cells being trapped in the lungs. Many patients get nauseated during the infusion from the preservative used in storing the stem cells. On day +1, another infusion of stem cells can be given if needed, but the oncologist doesn't think it will be necessary. The remaining stem cells will be kept frozen for up to ten years, in case Collin needs them in the future.

Day -1 to day +7 to +10 is called the Aplastic Phase. Collin's white blood cell count will be 0, there will be severe mucositis, and he will need multiple blood and platelet transfusions to minimize bleeding from the mouth and gut. He will need morphine to control pain, and nutrition will be provided intravenously. He will be at very high risk of infections.

Day +7 to day +21 is the Recovery Phase. New cells will begin to grow and the WBC count will begin to rise. The mucositis in the mouth and gut will heal. Antibiotics will be discontinued and the need for pain meds will stop. He will begin to eat again. Most patients are discharged from the hospital during this time. Before Collin comes back home, the house will need to be cleaned thoroughly, carpets cleaned, furnace filter cleaned, etc. We will need to replace the air filter in our car, and only re-circulate the air in the car, not draw in outside air. There is probably much more to this that I will learn about tomorrow.

Day +21 to day +100 is the Outpatient Recovery phase. Collin will continue to make progress and will be followed as an outpatient. His immune system will be quite immature and the risk of infection is high. At some point he will most likely be readmitted to the hospital with a fever. Because his immune system will be so vulnerable, he will need to stay in relative isolation, only leaving the house for medical appointments. He will need to wear a mask when he leaves the house. He cannot be around anyone who is sick, or has been in contact with someone who is sick. He cannot be around anyone who has recently had a live vaccine, or anyone who hasn't been vaccinated. He cannot be around anyone who has shingles or chicken pox, as this could be life threatening. We have to move houseplants to an area he will not spend time in. Fresh flowers, fruit baskets, etc. will not be permitted in the house because of risk of bacterial infections. His food will need to be freshly prepared; he cannot have restaurant food that would have been handled by multiple people. We will most likely have Bailey stay with his cousin for a while so that he can't lick Collin. We won't be able to attend the activites that lead up to THON, but his doctor feels that by February he will be safe to attend THON. There are many more rules and precautions we will need to follow that I will learn about tomorrow.

The oncologist also told us today that once Collin doesn't need blood transfusions and frequent lab draws, his Broviac will be removed because it is a constant risk of infection. She said she is considering keeping him on maintenance chemo for six months once his counts have recovered to hopefully help prevent relapse. Since the chemo would need to be administered intravenously, she would put in a mediport, which is an appliance placed in the chest under the skin through which chemo can be given and blood draws can be done with less pain than a typical needle stick, and it has a lower risk of infection.

I'm sure there is information from today that I have forgotten to include tonight, and I know I'll be getting a lot more information tomorrow. It is a lot to digest and wrap my head around, and I'm exhausted. The thought of Collin being as sick as he was during the first two rounds of chemo, or having to go through Morphine withdrawal again, or losing interest in food after we've worked to restore his interest in eating breaks my heart. No child should have to endure this, and no parent should have to watch their child suffer.

Tuesday, September 21

I can't believe we've been home a week already! Last Wednesday, a nurse came to the house to draw labs, and by the end of the day I had received a call from a nurse at the clinic saying that Collin's counts were high enough that we didn't have to give any more Neupogen injections. But because of the Neupogen the night before, Collin was miserable Wednesday night, so Collin, Bill and I didn't get much sleep. I tried giving him a dose of Tylenol for the pain, but it didn't make a difference. I ended up giving him a dose of Morphine Wednesday night, and then a few more throughout the day Thursday. Thankfully he slept much better Thursday night, and was more like himself by Friday. Since then, he has enjoyed being home, playing with Neya, seeing her off at the bus stop in the morning and picking her up from school in the afternoon, playing with his toys, and watching videos of kid's songs on You Tube with Bill. Last Saturday Collin turned 21months old, and the four of us took advantage of the beautiful weather and took a nice long walk. We stopped at the park and thought we'd see if Collin would enjoy some time on the swings, but he wanted no part of them. Since I'm not sure what he sees, I wondered if his vision was part of the problem; if I had double vision, I don't think swinging would make me feel very well. So, we gave up on that, put him back in the stroller, and kept walking, which he enjoyed. We also decided to become a Penn State THON family, to help raise money for Childhood Cancer Research, and we are looking forward to experiencing THON in February as long as Collin is healthy enough to attend.

Today, Collin had an outpatient PT eval. His therapist noticed improvement since the last time she saw him. The session went very well, and Collin worked very hard. He did a lot of leaning and reaching, pulling himself up to stand, playing while standing at a surface, and walking pushing a toy grocery cart. He requires less assistance with standing and walking; now when he walks his steps are much more controlled, and he supports his own weight. We just help him steer the push toy or walker, and help prevent it from getting away from him. If he walks holding on to my hands, I'm really just there for reassurance; he walks and supports himself, I'm not holding him up (at least until he gets fatigued). He will have a few more outpatient PT visits before he is readmitted on Oct. 4, and he has an outpatient OT eval next week.

Tomorrow we meet with the oncologist to discuss the high dose chemo and stem cell transplant, and to sign consent forms for everything. I'm nervous, both about the meeting tomorrow, and the admission in October. I'm not looking forward to going back to the hospital and being separated as a family for another length of time. I don't want to see Collin sick again, or come down with another infection. I'm enjoying the little things, like being able to open the windows and breathe fresh air, hear the birds, etc. I've never been this tired in my life, physically, mentally, or emotionally, and finding the stamina to get through the next round is going to be a challenge. I guess in a way it's like running a marathon; you have to push yourself to keep going even when you think you can't continue. Yesterday, we received a special gift from an amazing person who heard of Collin through a friend. This person is a runner, and just ran a half marathon a few days ago with the Leukemia & Lymphoma Society Team. She had pictures of some very special kids in whose honor she was running pinned on her jersey, including Collin, and those photos inspired her and many other wonderful people to keep running and complete the marathon. Yesterday, we received an envelope from her, and in it was a beautiful card, and her medal from the marathon! She sent her medal to Collin, and said he was a hero and an inspiration. I am so touched by this, and I will bring that medal to the hospital and hang it on Collin's bed, as a symbol of his strength and so that I can look at it every day and be inspired by the strength and love of others. When he is old enough to understand, I will make sure he knows how special that medal is!

Tuesday, September 14

This morning the nurse practitioner surprised us with the news that we could go home today! Collin's counts had come up significantly overnight, so they felt we could safely return home. We have to give IV and oral antibiotics twice a day to get rid of the infections Collin has, and Bill gave the Neupogen shot tonight-he's a pro at it! It is so nice to be home!

Monday, September 13

This morning I found out that one of the infections Collin has is a urinary tract infection called pseudomonas, which is probably the one that caused the high fever and rigors Saturday morning. One of the broad spectrum antibiotics, Cefepime, will treat it, but it also requires another antibiotic, Ciprofoxacin, aka Cipro. The other infection is strep veridans, which the other broad spectrum antibiotic Vancomycin is treating. Because this is not the first UTI Collin has had, a renal ultrasound was done today to make sure there is no blockage or other anatomical reason for the UTIs. Luckily the ultrasound was normal. An echocardiogram was also scheduled for this afternoon to take a look at Collin's cardiac function in preparation for his final round of chemo and stem cell rescue. Collin was great for both the renal ultrasound and the EKG; he layed still and cooperated for both tests. He really is a trooper! The EKG showed no problems with his heart. Between the two tests, and a PT session where Collin worked very hard walking and going up and down steps, the day was very tiring; poor Collin was overtired tonight and took a while to settle enough to go to sleep. Hopefully he will get a good nights sleep tonight-he definitely needs it!

If all goes well, it looks like we may be discharged by the end of this week. It will be nice to have a little more time at home before the final round; it looks like Collin will be admitted for that on October 4... 

Sunday, September 12

It's been a week since I've updated the blog, so here's a review of the last week...

Last Sunday (Sept. 5) Collin had a mid-morning nap courtesy of the Benadryl and Reglan combination he was receiving to help prevent nausea from the chemo. Again when he woke up from the nap, he immediately started screaming and crying, in a way that is not normal for him. We tried giving a dose of oral Morphine to see if he was in pain, but it didn't help calm him at all. Half an hour later we gave a dose of Ativan, and he calmed down right away. That afternoon, he had the Benadryl/Reglan combination again, but he didn't go to sleep, and he had no more screaming episodes. The pattern that day followed the same pattern as the day before, and I really began to question whether the Reglan caused some sort of disturbance in his sleep cycle that caused him to wake up screaming; the episodes were similar to the night terrors that Neya used to have when she was around the same age. Reglan can cause some pretty bizarre side effects which is why it's given with Benadryl, but I think we'll try not to use it during the next round of chemo. There are other drugs that can be used to prevent nausea instead, so it's not worth the risks.

Monday, Labor Day, was quiet, other than having to replace Collin's feeding tube after it was accidentally pulled out during a vigorous game of Pekaboo between Collin and Neya. Tuesday was another quiet day. Collin's ANC was pretty high, which the attending physician explained was because the Neupogen had caused Collin's bone marrow to push out all of the blood cells that it had been manufacturing. She told me his counts would go down to zero by the next day or so, as expected. 

By Wednesday (Sept. 8), the mucositis had started; Collin's breathing sounded kind of junky the night before, and his voice was sounding hoarse. Luckily he only spit up mucous a few times during the day. Then, around 4:00 Thursday morning, Collin threw up, and it was a large enough amount that I had to change him and the bed sheets. Later Thursday he threw up a few more times because of the mucous in his throat. He also received a blood transfusion Thursday because his Hemoglobin was low. Friday I put a mask on Collin and got him out of the room for a while. We were able to go down to the gym for OT; he had a great therapy session and enjoyed getting out of the room for a while.  

Saturday morning, around 3:00 AM, Collin's fever spiked like it always does when his immune system reaches zero. His temp was 102.6, so blood cultures and a chest X-Ray were done to check for infection, and he was started on Tylenol and two broad spectrum antibiotics to treat any infection that was brewing. Around 7:00 AM, Collin developed rigors (violent shivering) and threw up; I called for our nurse and checked Collin's temp with my ear thermometer, which read 105. He was immediately given another dose of Tylenol, which thankfully brought his fever down pretty quickly. The doctors explained that sometimes the first dose of antibiotics can cause an inflammatory reaction in the body, which causes another spike in temp. Later I was told that the cultures showed that there was indeed not one but two infections in Collin's blood. He also had another blood transfusion Saturday because his Hemoglobin was still low. Saturday night, one lumen of his Broviac was clogged, and required treatment with TPA, a drug that breaks up blood clots. Most likely the line wasn't flushed well enough after the blood transfusion, which allowed some blood to clot in the line. The TPA had to sit in the lumen for almost three hours, but thankfully it eventually unclogged the line. 

Sunday was a quieter day, and Collin seemed to feel a bit better. His breathing sounded clearer, but his voice still sounded a bit hoarse from the mucositis. He received a transfusion of platelets in the morning. He only threw up once; of course it was just after I had finished bathing and dressing him for bed Sunday evening, so I ended up having to do it all over again, and then change the bedding as well.