Its Tuesday June 1st, D-Day in my mind. Today is the day we are starting our chemo treatments. I can not describe in words how scared yet happy I am. I know that sounds VERY odd but I am so scared where this journey is taking us, the unknown has got to be one of the scariest things on this god given earth; yet I am happy to get this show on the road. The last 3 weeks since we found out about the tumor all I wanted to do was get this thing started to keep it from coming back. Now is finally the day and I am scared myself and for my little baby. I am scared at how sick he could get, I am scared for what all these "poisons" will do to him and I am scared for the fight.
We have a TON of people backing us and I am thankful for EACH-AND-EVERYONE-OF-YOU! If we did not have the backing of hundreds of people I would feel very much more weak and unable to face this alone as a small young family.
We are where we need to be, I am rest assured in that. Our Cancer team is very on top of their game and I know they will give us their honest opinions even if its something we don't want to hear!
So today starts day zero of a very long journey. I am going to try to update everyday as to what drugs, side effects and feelings are happening, I may even upload an adorably cute picture as long as he is feeling up to giving me that $1000 smile :)
Day 0-6/1/10-IV of fluids started, needs to be running for 2 hours before they will start the first round of chemo. He seems happy and is still smiling and giggling. Right now they are running yet another hearing test on him for a baseline study. We are then being admitted to the hospital on the Hemoc floor where we will remain for a month or more.
A little before 9:45 on day one the nurse came in and gave Kee anti-nausea meds, one of the chemo drugs given tonight has a side effect of nausea. Right after that ran through his central line she started him on
Vincristine , it lasted approximately 15 minutes, then she flushed it with saline and began running the scarier of the two drugs
Cisplatin. He will be on Cisplatin for 6 hours through the night. Then off drugs, except IV's all day tomorrow and start another round tomorrow evening around the same time.
I called the Chaplin in to say a quick prayer before chemo started but I guess he/she was off somewhere else cause the never answer the page; they best not show up here at 1 am when I am finally trotting off to sleep and Keegan has been sleeping for hours..
**On a side note, while we were waiting to be admitted Keegan did manage to pee through his diaper onto my crouch and made me look like I peed myself. It was quite lovely....thank goodness for black gauchos. Oh and I still have not changed because the boxes of my clothes are still in the car. THANKS :)
Tomorrow is a new days, lets see what is in store......
Day 1-6/2/10-Today has gone fairly well. When Keegan and I decided to wake up; whenever that was...I am not really sure....we noticed he looked a little puffy. He had been given fluids all night and they settled on one side of his face. He acted normalish almost all day! I was VERY happy to see that. He ate and peed like a champ-Let Me tell you! Dr. Shi was very happy with how well he took that first round. I tried to feed him around 8ish and he acted like he has an upset tummy; not finishing his bottle and gagging a little so I had the nurse give him another type of anti nausea medication and he passed out....meanwhile mommy and daddy got a room at the BIG HOUSE-no not the jail, we are getting settled in back over at the big Ronald McDonald house a few block away. Its our home away from home.
Tonight is actually considered day 1 of the chemo with day 0 being the first round. Tonight was a much sorter cycle. This one only is lasting 3 hours vs. the 6 last night. Tonight he got
Etoposide and
Cyclophosphamide. Because of both of these drugs, he is also being given
Mesna which helps coat and protect his bladder from damage done from these drugs. He is passed out and sleeping well, for the 2 hours he was on Etoposide he had to have his blood pressure taken every 15 minutes because a side effect is a low blood pressure. Usually this upsets him and wakes him up but the Ativan knocked him out! He needs a good nights rest though, he has been a trooper! Look what we did today!
He sat with Daddy and had some breakfast!
*Notice the mesh on his belly circa 1980's body builder top, it helps him NOT pull out his G-tube or central line.
Got some smiles after therapy, which is a RARE thing!
And ate dinner with momma!
Today was a good day, I know they all won't be like this but it sure would be nice, you can hardly tell he is a cancer patient!
Day 2-6/3/10-Today started our REALLY bad. I fed Keegan about 6:30 am and almost immediately it all came back up. I am not a big fan of puke but really when it's your own kid it doesn't matter all that much. After we got him all cleaned up mommy waddled her puke covered self into the glass elevators, down through the main atrium and out to a car where Ry was waiting for me. I drove back to RMH, promptly took a shower and then decided it was nap time; you see Mrs. Snorey McSnorester I was talking about got worse and worse through the night. I finally had to turn on the movie
Footloose but every time a song would come on I would find myself waking up and singing it.
Keegan threw up one more time today, so they ordered up some more anti-nausea meds and we continued on through the day. Aunt Abby came to visit. He slept alot today but Aunt Abby did get some cuddle time! Abby and I also decorated his room all beautiful like (and if you want to send anything else to decorate his room with please do, we could always use a change-we are here for awhile!).
Chemo again started at 10:00 with more anti-nausea meds given a half hour before. He was on the same drugs as last night, Etoposide and Cyclophosphamide. He also has to get Mesna for the next 24 hours to protect the lining of his bladder. It's getting a tad (teenie tiny) bit better every night when the hang the chemo, not as hard as the night before, am I getting used to it already?
Tomorrow he will get a catheter and some different kinds of chemo....on to day 3....We Charge ahead with vigor....
OHHHH btw the Governor was on the floor yesterday visiting a patient-whohoooo!
Keegan and Aunt Abby
Go Team Keegan!
Thanks to the Rexing's and Wilson's
Our Room with a view of IUPUI
Its Friday, Day 3 6/4/10-Ry and I had breakfast provided by a local church at RMH this morning, it was a good way to start the day! After that around 9ish we headed to the hospital to be with Baby Kee. The day went pretty well. We were told by our day nurse that later that day or early evening Keegan would be getting a catheter placed because the chemo he would be given that night if left too long in his diaper could cause sores on his bum and manly parts. The drug he would get later that night
Methotrexate, is also the drug that causes sores in the GI tract that can take a few days to appear, I am crossing my fingers that that doesn't happen because I DO NOT want to find him via G-Tube.
We had some biker ladies come visit us today! The
Miracle Ride is this weekend in Indy and thousands of bikers are in town to raise money for Riley! The actual ride is Sunday but some ladies from the southern bikers club came and brought Keegan a Do-Rag, blanket, teddy bear, book and backpack! It was really neat, too bad he AND Ryan were both sleeping!
Nothing else too exciting; they started the Methotrexate around 10 pm, after they had to re-do his catheter because it was leaking (not big enough). The Methotrexate was a BRIGHT yellow and I watched it go into his veins, and eventually come out a lighter color in his urine, gross I know. But they also have to monitor his urine to make sure the right amounts of this drug are actually coming out of his body. He will get another drug to help flush it out tomorrow night. Then we wait and watch for all of his counts to drop.
We had a male nurse last night and just for the record I have decided I really like male nurses. This is the second one we have ever had in our visits to Riley and they have both been wonderful! He explained everything to me like the nurse we had had the past 3 nights. He wanted me to ask questions so I knew what was going on and comfortable with everything.
I just ask that everyone keep the prayers coming, the rest of this month will be hard because he is VERY prone to infections since his immune system is being depleted!
Stop and smell the flowers!
Hangin with Pup Dog!
Day 4 6/5.10-Today started out pretty good, no direct vomiting or anything. We continued to recover from the Methotrexate by receiving LOTS and LOTS of IV fluid. They monitored how well it was passing through his kidney's by testing his urine a couple of times a day (he still has his catheter in).
The day seemed to pass pretty quickly, for hospital time; which we all know is extremely slower than normal time. He was in a great mood almost all day and was just a joy to be around (not like he isn't every other day of the week!). He was talking up a storm, at this rate I think he will talk and have a conversation with us before he is able to hold his own head up!
He continues to take IV fluids but also is eating quite well, the nurses and doctors seem impressed that he can still take food orally. Luckily the Methotrexate hasn't reared its ugly head quite yet and the mouth sores have yet to happen.
Some of the bikers for the miracle ride came up to the cancer unit today. One of them being our friend Shaney's cousin. Her and her husband stopped in and gave Keegan and cute Harley Davidson Beenie. He looks like a little biker with it on!
Last night he got
Leucovorin. This drug basically exists to help keep Keegan's Healthy cells that are being attacked by the Methotrexate healthy and strong and basically stops the attack. So his urine and blood are still being monitored to make sure that Leucovorin is doing its job.
Here are a couple cutie patootie pics from today:
Baby's Got Mommy
Mommy Loves her Baby
Chewing on Aunt Laura's Gift-Num Yummy!
On to Day 5!
Day 5 6/6/10-Today is Miracle Ride Day! Yea! Mom was coming up at the crack of dawn to be here for it. The Bikers were coming by the ROC (Riley Outpatient Center) between 11-12. We got baby Kee all ready put him in his "barley used" stroller and wheeled him and his IV pole down stairs 5 floors in the glass elevators then all the way out to the ROC. He had to have a mask on of coarse because any time the cancer patients step off the floor they have to wear a mask. When we got down to the correct area and got a seat, little did we know Keegan vomited in his face mask! I felt so bad for the little guy. SOOOOO we turned around and took him right back up to the 5th floor to get cleaned up.
He had a pretty good day otherwise, he did develop a pretty nasty rash on his abdomen an diaper area. We think it was from the Leucovorin that was given the night before. The rash looks really really painful. Its bright red, hot, sand papery feel and just plain nasty. Our nurse gave him a nice dose of benedryl that seemed to stop they itching that Kee was having.
By Mid afternoon Ryan let me know he was going to go home and "try" to work for a couple of days. I felt badly for him because I knew he didn't want to go and leave us but we can't do without his income and insurance these days. My hope is that we can settle into a routine once this first round is done and Ry can actually get some work done either in Keegan's hospital room or in our room at RMH since we have a nice desk decorated with pictures of family and friends.
Mom decided to stay the night with baby Kee which meant I got to go back to RMH and get a good nights rest! God Bless my momma! We had another great Nurse Renae, she rocked!
Today was pretty uneventful, we are just waiting around for the Methotrexate to clear his system and his counts to drop.....we will be here a while!
Happy Boy!
Those Eyes!
The Cutest Harley Dude you ever did see!
Rockin' the mask!
Day 6/7/10-Today started out pretty well, Ry had went home yesterday afternoon, mom stayed with Kee so I could go back to RMH and get a good nights rest. I woke up super early (5:15) drove moms car over to Riley where she met me to go home. I headed up to Kee's room and fell asleep in the chair bed. When I woke up around 9 or so, our nurse Cathy came in to inform me that we got our own private room! Yippee! It's what we have been waiting for for the past couple of days.
I packed up all of our decorations, blankets, toys and "stuff" and prepared to move right next door to the private room. I immediately began moving the room around how I thought it would best fit us and started to put up all the decorations. Cousin Pam from Lewisport sent us some twirly sparkly decorations to hang from the ceiling so when Kee is laying on his back he has something to look at! Such a great idea! She also sent some die cut shapes of Noah's Ark and the animals but I still have yet to find a place to put them, they are way cute though! I need to take pics of the new room ASAP so everyone can see! We even have our own private bathroom!
The rest of the day went pretty well. We did some physical therapy here in the room and the nurse got him off of all his IV's for the day and I took him for a stroll around the unit. I think he enjoyed it!
Later in the day I decided to head back to RMH to get some laundry done and dinner was going to be served at 6. Went back started 2 loads of laundry and took a nice hot shower. By then dinner was ready. I headed over to the kitchen and had roast and potatoes with some cake to top it off! I am so grateful for all the churches and families that donate their time and make dinner for the house! It really helps me feel more at home. I hope one day I can pay it forward and prepare meals for the RMH at home in Evansville!
After dinner I headed back to the hospital to spend the evening with Keegan but when I got to his room he was gone and so was his stroller! I didn't completely freak out at first but I did decide to take a walk around the unit to see if I could find him but to no avail. I came back in the room and waited about 5 minutes, surely whoever borrowed him would bring him back.....but NO! So I went on the look out again! This time I found him hanging out at the nurses station. They just kept going on and on about how cute he is! Made me feel good :)
When we got back to the room I played with him a little while in his stroller and then got him out to hold him for a little while; I don't get to do that often since he is hooked up to lots of machines. After about 5 minutes or so he started to vomit and then again and again. Luckily his nurse was in and helped me to catch it and get him in bed and cleaned.
A little while later we headed to bed, no other meds scheduled for the night except his usual Keppra for seizures and his Nexium. I was sitting in the chair bed watching a video on blood (parent education stuff) when all of a sudden his machines started beeping. His pulse ox dropped from the 99/100 range all the way down to 79/80. I FREAKED and paged the nurse. The on call doctor came in they said they couldn't rule out a seizure since I had a hard time waking him up but it was then that I decided I needed to sleep my his bedside. Hoping for a better day 7!
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