Chemo begins

Shaylee's chemo began with a ten week induction. Chemo once a week for ten weeks. Then a two week break, then chemo once a week for four weeks, then two weeks off for the rest of the time. The first time we went up to the hospital for an actual treatment was nerve wrecking. I remember being so afraid of what we were doing. What was it going to do to her physically, emotionally, mentally etc. Logically I knew we really didn't ahve a whole lot of choice, not really.

I remember the first time they accessed her port. I remember which nurse it was, which room it was, that it was overcast that day........ If I consentrate, I can even remember what she was wearing. I remember how Shaylee cried....how I didn't. I couldn't. I didnt' want to further upset Shaylee. I remember she got to order lunch, and she thought that was COOL! Once the accessing the port was done, she didn't fuss and cry again until it was time to take the tagaderm bandage off - big plastic monster! She hated that part for the whole 60weeks. Can't blame her.

The actual chemo process wasn't too stressful really. She had the IV hooked into her port, and we just took it around with us when we walked. We always packed our backpack full of color books, books to read etc. Funny, that bag has become a standard with us. Doctor appointment? Get the bag! Meeting at school kids have to go too? Get the bag! Soccer game? Get the bag! Its the same bag we take to each and every one of Shaylee's MRI's. Our motto? "Don't leave home without it!"

Shaylee did pretty good that evening of first chemo, but she woke up SO sick. Just broke my heart. We hadn't had the chance to pick up the anti-nausia meds, so James had to run and get it. I wanted to cry watching Shaylee get sick over and over. She took the meds when he got home and they did help. Mind you she didnt' take them very well from taht point on but she did take them that first time!

~*~*~*~
Wednesday, September 17, 2003 7:58 PM CDT
Shaylee had her first Chemo treatment yesterday. She now weighs 29lb 9oz! wahoo! *grin* She did very very well! The nurse even commented on how well Shay did for being three years old. *PROUD smile* They put the "numbing" cream on the port site to help numb it up before they did anything. She did cry a bit when they did the actual port access, but I think some of that was fear of unknown more than anything. She stopped really quickly and was joking around in no time. We decided that the IV machine and pole needed a name. After all grandpa Dave had his "buddy" when he was in the hospital - which by the way REALLY helped ease her discomfort with it, she knew what it was from visiting him - and after much thought she named it "Chilly". So now she knows she'll have Chilly to walk around with when we go. She did awsome with the treatment and was so strong and brave I am amazed and proud. She is my hero.This mornning she woke up and was sick. Breaks my heart to see. She threw up a few times before we got the anti-nausea medicine from the pharmacy. She took the medicine like a champ - and it is BRIGHT GREEN! Then she took a nice nap until it was time to go visit grandpa and grandma. She hasn't gotten sick since we gave it to her, and she's eating like a sailor. *laugh* Which actually is fairly normal! Thank you all for your thoughts and prayers. They most deff. help and we can feel the prayer cover. Thank you!!

~*~*~*~

Let me tell you about the process of each appointment. You come up, check in at the main desk of the pediatric oncology/hemotology clinic. Then you sit down and wait for your name to be called. During this time Shaylee loved to look at the huge fish tank, watch cartoons on the tv, ALWAYS -always always- get a drink from the water cooler until Nurse Kathy called your name. Then you go to the intake corner where you are weighed, measured, blood pressure and temp taken, along with the "how are you feeling?" and "are you in pain?" questions. After that, if a room is available, Nurse Kathy will walk you there and make sure you have what you need - do you have EMLA cream on (worth its weight in gold is that stuff)? How long? *EMLA is the numbing cream* Then you wait for one of the other nurses to come in and do the actual access. They access the port, first thing they do is a blood draw - the port allows them to do this, and then hang a saline solution without having to restick her. While the saline is drip drip dripping away, they run the blood work. They have to run the blood each week so they know how she's doing. They have to watch the white count, the plateletts etc. Then the nurse (or the doctor if he has time) will come in and let you know the results of the blood draw. Then the nurse goes to order the chemo. At some point after blood work the doctor comes in and talks to you. How are things going? How did she do last time? was she sick? Pooping ok? Head hurting? Walk on your heals..... that one is because the vincristine can cause the muscles in the legs to shorten a bit, thus causing kids to walk on tip toe. Once the doctors done and your chemo drip is hooked up your pretty much "free" for an hour or so. CAN NOT LEAVE the clinic, but you can wander to the play room, walk around etc. If you're "lucky" you get abed in the infusion room, where you have your own little tv, otherwise you hang in one of the exam rooms. If your there before 10, you get to order lunch and they deliver it to you around 11. Once your chemo is done, you get a saline and heprin flush - that keeps the port from becoming clogged and thus infected (NOT a good thing!). Oh yes, and once you get "stuck" for port access or blood draw you get to choose a toy from the toy box!


Shaylee's second appointment was one week after her first. Now that she knew what to expect she did so well. We discovered if Mommy held her on her lap, and we read a book, that Shaylee could focus on the book and NOT on the fact that little needle was sticking her in the chest. She impressed the nurses by not crying the second time. I was so proud of her, but I can tell you, as a parent it just killed me that we were having to do this each week. My heart ached, basically we were injecting her with something that was going to hopefully kill the tumor but at the same time, was making her so sick and could cause so many other problems.

~*~*~*~

Wednesday, September 24, 2003 5:00 PM CDT
Shaylee had her second chemo treatment yesterday. She did AWSOME! She didn't even cry when they accessed the port. What a brave, strong girl she is! They did a blood draw (one advantage of the port, they can draw blood AND start the IV all in one poke!) and the results from that were good. We are aware however, that they may drop as of this weekend. Usually seem to drop, from what we've been told, about 10days after the first treatment. So we have to keep an eye on that. Plus we need to be sure she's having regular BM's - one of the side effects of vincristine is constipation. Joy.ANYWAY! Shaylee did awsome. I have some pictures I'm going to try and get up on the photo album if I can figure it out. HA! We played with her leap pad, and read some books. My mom is working to organize a bag/box to take in with us each week that will have toys or books or something to do. She figures that way friends and family that want to "do something" can. Isn't she a great grandma!?The nurses were so nice, they let us order her a lunch since we were there at lunch time. Just as lunch came a bed in the infusion room opened up (we were just in normal exam room) so she got to watch Stanely and Rollie Pollie while she ate. Double treat since we don't have TV access at home. She ate ALL her mac-n-cheese.When the time came to remove the needle from the port, she did cry. But that was because seh was so tired by then, plus taking that big ol' plastic bandage thing off HURTS, even if they do soften it up some w/ baby oil! She was very brave and continues to impress me with her spirit and strength. We gave her the anti-nausea meds before bed this time and she did just fine thru the night. She woke up in middle of the night, just in time for her next dose. We gave her another this AM (its every 6hrs) and she was a "little sick" but I think thats because she sat up too quickly. She felt up to going to the library this morning and eating a bite of lunch, but she's resting and watching a video from the library now. She's a smart cookie, she knows when to go and when to rest!Thank you all for your prayers and thoughts. I know full well that is what is making all of this bearable. I know we wouldn't make it thru with out your support and with out God helping us. Thank you each and everyone!!

~*~*~*~
Many times in those first weeks I remember thinking HOW on earth are we going to get through this?! But from day one of this journey there have been two verses that have pulled m through. One is Romans 8:28 which says "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." The other was/is Jeremiah 29:11 which says "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." I KNOW we made it through the way we did becuse of Gods grace. Shaylee's journey could have been so much harder than it was. I saw other kids going through chemo each week who got much sicker. I KNOW kids who were going through the same protocol as Shaylee who had reactions, problems, feeding tubes......... I still hold strong to Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" GOD HAS A PURPOSE FOR THIS. A REASON. There is no doubt in my mind, that Shaylee (and our whole family) went through this for a reason. There is SOMETHING He is going to use her for. At this point I don't know what it is, I may never know, but there was a reason for it. I know for me, my faith is what got me through. How families who don't have that faith do it, I don't know. There were many days I wanted to sit down and cry and yell "I CAN'T DO THIS ANYMORE!!" Many days I cried out to God to get me through....and He did. I really learned the 'value of a life' as Chris Rice says, life DOES "mean so much"