Kennedy's surgery went really well today. They got her line out and she was back in recovery in less than 30 minutes. She took awhile to wake up, as always, but once she did she was ready to go! She has a big lump on her chest right above where the line was and it's pretty tender to the touch. Hopefully it won't cause her too much pain though.
Once we got back to the room, the doctors said they really had no reason to keep us and we were free to go! She has ZERO neutrophils today so I'm kind of shocked they let us go, but her monocytes are way up so the neutrophils will follow soon. In the meantime we're going to stay home and keep her away from any chance of infection.
It was bittersweet to say goodbye to our nurses tonight, we're going to miss them... it's SO good to be home though! I am looking forward to my bed tonight! Next up will be our first visit to clinic next Tuesday where we will discuss the plan for here on out. Please pray that Kennedy stays in remission forever! This is truly our heart's cry!
OK here are the rest of my Q&A... be sure to click on next to see them all!
Q21: (from Tierney) Just from reading Kennedy's site alone I have learned so much medically. You are a wealth of information when it comes to medical knowledge. I'm lucky to remember if you're supposed to feed a cold and starve a flue or vise versa.
Anyway, since you are so wise medically I have a question that has bothered me for years that maybe you can finally answer. Why do men have nipples? And is there really any purpose for the appendix or the tonsils?
A21: Well… men would look pretty funny without nipples, don’t you think?! Actually, nipples are one of those characteristics like arms, legs, the brain etc that is not gender specific. Everyone gets them (though I’m skeptical about the brain sometimes). Then the sex hormones determine whether the nipples are functional (in women) or not (in men). The breast tissue can also protect the lungs from injury.
The tonsils, I am convinced, are from the devil. They cause tonsillitis, strep throat, and then if you have to have them taken out you are miserable for a long time! Keeghan and I are the only tonsil owners in our household. Highly overrated. I’ve been told that tonsils catch bacteria in small children and even though they can become infected themselves they can build up the child’s immune system to help fight off other infections. By the time the child reaches 3 years old the tonsils have done their job and are pretty much useless. For most people it’s no big deal to have them there, or they can cause lots of problems like with Kassidy who had strep 10 times last year between October and February. We don’t miss her tonsils AT ALL!
The appendix is there to give surgeons something to remove when they get bored. HA! I actually have no idea about this one… there are lots of theories out there, but who knows if they are true or not? All I know is everyone in our family still has theirs and I’d like to keep it that way!
Q22: (from Donna) When Kennedy is released, is that the end of the carepages? :-(
No way! I actually had a caringbridge page for Kennedy way before her Leukemia diagnosis, but I switched over in July because I like the email notifications that you all get when I update (how vain is that?!). I do still transfer her updates over there every so often so I have everything in one place. Her CB page was started back in 2005 and goes through almost all her medical crud. (It’s a good read if you have a few days to waste and don’t mind getting mad at stupid Army doctors and a couple GIs!) I would HOPE things will settle down for her now, but she’s Kennedy and she likes to be a medical marvel apparently! Hopefully though I can update and tell you how GREAT she is doing from now on! :o)
Q23: (From Darla) Why do you think that the Lord allows the suffering of the children?
Why doesn't he answer the cries of mothers pleading for their children?
He has the power to make it alright and it would be a huge deal to turn MANY unbelievers into believers...so why not?
A23: I could never pretend to even understand a fraction of the Lord and how He works. I have no idea why He allows horrible things to happen, especially to children. And how does He choose who to heal and who not to? Why is Kennedy sitting here, done with treatment, doing well, when Charlie and Chloe who had the SAME disease are in Heaven now? They had just as many, if not more, people praying for their healing.
I believe that when we are created God has a specific plan for us. We are put here to glorify Him. We are each sent with a specific mission, and once that mission has been fulfilled He calls us home. I think with some people their mission in life may be fulfilled through their death whether than be at 1 year old or 100 years old. I also think that many times God DOES answer the pleas of the mothers by bringing ultimate healing to the child by ending their suffering and taking them to Heaven. There is no cancer in Heaven. No heart disease, no brain injuries, no hurt, no sadness. The ones that are sad are those of us left behind to pick up the pieces and try to figure out how to move forward.
I don’t know what God’s plan is for Kennedy’s life… or mine, or yours or Luke’s. I don’t know what He expects us to do with all we have endured; but with every person I meet, every person who reads Kennedy’s story or comes to know her in real life, I pray that the Lord will use us to further His kingdom and glorify His name. I know that I, personally, fall far short of the way I am supposed to live for Him. I know there are times that I definitely do NOT glorify His name. There are times that I get angry and I yell and I cry and I question why He chose Kennedy to go through one medical crisis after another. It’s not fair! Even with this head knowledge and even though I believe it in my heart, I still question, I still hurt when we lose friends. My heart has shattered so many times this summer that I can hardly stand it. I definitely have a lot of questions for Him when I get to Heaven. I find comfort in the fact the He is in control and He knows what He’s doing even when we don’t understand… but it doesn’t stop the tears from falling.
OK that's it! Thanks to Vonda for asking me the funniest question, Tierney and Kelly for asking me the most random, Darla for asking the hardest for me to answer, and Anne for asking the most touching. If you will all email me your addresses and shirt sizes I will send them out!
Before I begin, I need to ask for prayers for one of our families up here. Our friend RJ passed away around 7:00 tonight. The family knew it was going to happen, but that doesn't make it any easier. Please keep his family in your prayers as they face life without RJ.
Kennedy's counts are bouncing again... I'm still hopeful for Monday though! So as of an hour ago, Kennedy is NPO (nothing to eat or drink). Around 9:00 in the morning she will be going to surgery to have her Hickman line removed. I truly think that if we unwrapped her ace bandage and gave it an hour it would be out on its own. It's barely in there anyway. How ironic is it that we haven't been able to keep a line IN and now they are going to knock her out to get the thing OUT?! UGH It is safer to do it this way, the only bummer is that on Monday morning she's going to have to get poked so they can check her counts. It's going to be a VERY fast procedure, but pray she wakes up ok and everything.
We are slowly starting to say goodbye to our nurses here and it's hard! They have been my social circle for the last 6 months! We're going to miss them so much! Kennedy gets so spoiled by them up here... I think we're going to have to visit lots! ;o)
Anyway, I feel like I have more to say, but my brain is not functioning right now (no mean comments!) so I guess I will close. Here are more of my answers to the Q&A. I'm almost done!!!
Q18: (from Melba) my question to you is...Has this difficult time your lives affected your marriage (either positively or negatively) and do you and Frank get to spend quality time alone?
A18: I was actually just talking about this with a friend. We’ve been told that Military couples have a high divorce rate… we’ve been told that parents with kids who have special needs have a high divorce rate… we’ve been told that parents of children with life threatening illnesses such as cancer have a high divorce rate… so WOW the odds are REALLY stacked against us! There have been times when we bicker a bit… being stuck together in a 10x10 room for days and days will do that to people! But once we both have a chance to cool off we’re fine. It has definitely made me more appreciative of him because he’s been willing to run and get whatever Kennedy, Keeghan or I need while we’re here. We are both determined not to let any of these stressors come in the way of our marriage. We’ve made it this far and we figure if we can overcome all that we’ve been through already, there’s not much that the devil can throw at us to bring us down. As far as quality time goes, we haven’t had any time alone since Keeghan was born, but I’m sure we’ll find time before Frank deploys!
Q19: (from Charlotte) Did you know about Kennedy's diagnosis before or after she was born? How long did it take to (for lack of a better word) accept that she had DS? And, where did you find the beautiful princess hat in my favorite picture?
A19: We did not know about Kennedy’s diagnosis until she was born. I was 24 when I got pregnant with her and 25 when she was born. I had the AFP test done just as a routine thing and it came back completely normal. Needless to say, when we heard the words “Down syndrome” for the first time when she was a few hours old, we were shocked. I knew NOTHING about Down syndrome and was completely devastated. I was sure she was going to die (I think it took about 5 doctors to convince me otherwise) and then I was handed information that said most “Down syndrome people” are institutionalized. Nice! My mom and I scrambled for updated information but for the first 3 weeks or so I was in a complete fog. Not long after that I was able to relax (after I was REALLY reassured she was going to live) and eventually I let myself bond and fell head over heels in love with my sweet baby girl. I still carry guilt over the devastation of the day of her birth when we should have been rejoicing, but I’m so thankful I have the rest of my life to make that up to her!!
Princess hat… I’m assuming you mean this picture?
I found that on ebay for $3. Ahhhh the joys of ebay!!!
Q20: (from Lisa) What do you think you are going to do or feel when you can finally unpack all the hospital stuff and know you are not going to be back in another week?
A20: Well, since I’m a procrastinator it will probably take me a few weeks to unpack (seriously). For this very reason we bought double of almost everything… one for the hospital and one for home. Remember me saying a few months ago that by the time we got the packing thing perfected we’d be done? Well… I was right! LOL We have everything in Rubbermaid bins and all sorted. The kids clothes are in plastic drawers which Frank will just carry upstairs to our room. I really think it’s not going to sink in until we are home for longer than 10 days and Kennedy starts going back to therapy and I start helping in Kameron’s class and we have to work on getting Keeghan un-spoiled! I have no idea how I’m going to feel then, but right now I’m a little anxious… maybe like it’s too good to be true? I’ll let you know in a couple weeks!! LOL
I am thankful for our nurses and happy to call them friends!
WBC: 1.9 Hgb: 10.2 Plt: 171 RBC: 3.49 Nt: .19 Sorry for the super late update tonight! Time just got away from me! Kennedy's counts are on the way up! I'm still guessing Monday for release. Tonight after her bath we noticed her line is a little lower... there is a "cuff" on the line under the skin that's supposed to hold it in, and that cuff is much lower that it should be... it's right at the incision site, so they had a chest x-ray done and we're waiting on the results still. I'll post again once we know. We only need it to hang in there a FEW more days so she doesn't have to get poked to get counts! Pray for that! I had a nice day today, I went home to Clarksville and had lunch with my friend Christina and then we went shopping for a bit and just hung out until Kass and Kam got out of school. Then we took the kids to the Fall Festival that their school puts on every year. Every classroom has a different game for the kids to play and they can collect candy and tickets to redeem in the prize room. They also have inflatables and hay rides outside. It's so much fun. The only bummer is that they usually do it at the end of October so the kids can wear their halloween costumes, but I guess someone had a problem with that and you know, it only takes one to ruin it for everyone else. *sigh* Oh well! Anyway, I know Kennedy would have loved it there this year! I really missed her being there!!! Kass and Kam had a great time and won some cool prizes. Kameron won a Coca Cola at one of the games and gave it to me :o). My sweet boy! After the Festival we went back to my mom's house and watched "Are You Smarter Than A 5th Grader". We all really like that show. (And I'd like to say that except for the Geography questions, I AM smarter than a 5th grader!) ;o) One of the categories tonight was First Grade English. Kameron was sitting there really quiet and all of the sudden he said, "Man... first grade English... I don't even know how to SPEAK English!!!" I said, "Well Kameron, what do you speak then?!" And he gave me this look (like I'm SO dumb) and said, "I speak MY language!" HAHA! Funny funny kid! Keeghan had a good time out today too I think. He stayed awake the whole way home in the car and played with his toys and "talked". He was great at lunch, full of smiles! Then he got to play in his jumper at home which made him happy. My mom kept him while we went to the Festival... getting a stroller around there is a nightmare! And then he had enough and screamed the whole way back to Vandy. Still, I know it was a nice change of pace for him (and me!). Anyway, that's about it... I have answered a bunch more questions, so go to the next update to read them! I'll post in the morning (or later I guess) when we know about Kennedy's line. I am thankful for school events and all the amazing people there who check in on Kennedy. It blesses me to know how much you all care! Q13: (from Kelly) Lets see how good your memory is. We hear what room you are in with Kennedy, but do you remember what room you were in at PVHMC when you were in the hosp. for pyelonephritis when you were about 22 weeks pregnant with Kassidy? Also where you met one of your favorite nurses! LOL!
A13: The real question is… do YOU remember?! No, I don’t LOL. But I know that Kass and Kam were born in the same room there… don’t remember that room number either though! I DO remember meeting one of my favorite nurses there… after she laughed at me for crying about getting an IV! I don’t cry about that anymore… much. Q14: (from Danna) What one thing would you wish for your children. 1 wish, 1 thing what would it be?
A14: That they come to know Jesus as their Savior and have a good walk with the Lord. That’s more important than anything. Q15: (from Kim) What is the greatest blessing to come from Kennedy's journal and your trials?
How do you do all you do? Raising 4 kids, all the trials, husband in the service, all your work with DS, have matching clothes and costumes and manage all you do....AND...be such an inspiration to everyone?
A15: The people that I’ve met along the way and the lessons the Lord has taught me about trusting Him for everything.
I plan way in advance, pray a lot, get help from my mom and I’m learning to delegate (like the world can really go on without ME right?! HA), just don’t look in my bedroom or you’ll see 6 months of “stuff” piled up! As for the matching outfits, I've gotten a few from friends (thanks Vonda!) and I LOVE to shop online. Just WAIT till you see their halloween costumes THIS year! :o) Q16: (from Chrissy) So, my question is, as the mother of another Groovy Girl fanatic, do you know the names of every one of Kennedy's babies?
A16: NO! LOL I do have a list of the ones she has so when someone calls and says “Does she have this one yet?!” I can tell them yes or no. I know the names of the first 15 or so that she got and beyond that I’m clueless. If you ask Kennedy, they are all “baby”. Q17: (from Kymberly) Kennedy is now done with the chemo. What happens next? What is the next step for her? Oh and when will her hair start to grow back?
A17: I actually just asked about this yesterday because I wasn’t sure either. Now we start going for monthly visits to clinic to get her blood checked. Of course if there are other issues we can call and go in sooner, but basically it’s life back to “normal”. Whatever that means! I THINK she may have one more bone marrow biopsy too... but I'm not 100ure about that.
Funny you should ask this! After Kennedy's bath tonight I was combing the few strands she has left and I noticed little peach fuzz starting to grow in! You can't see it unless you stare hard, but it's there... and it wasn't 2 days ago! YAY! I’ve been told it may grow back curly and thicker and most likely darker (so much for my one blonde!) so it will be interesting to see what happens!
WBC: 1.6 Hgb: 9.2 Plt: 105 RBC: 3.20 Nt: .10 Kennedy has been in an ultra defiant mood today which has been oh so fun! She decided she doesn't need vital signs done, she doesn't need PT anymore and she definitely doesn't need to JUMP. *sigh* The evening ended with a bottle of tea being dumped over her head (by her, not me) which resulted in a very sticky Kennedy! Now she is sitting on her bed pouting because she can't get out the door! But hey, at least she has energy! :o) Her counts are still dropping so my estimated guess is we'll be out of here on Monday. Tomorrow I am heading back to Clarksville for the day to have lunch and do some shopping with my friend Christina and then take Kassidy and Kameron to their Fall Festival at school. We always have a great time there! Anyway here are more answers from the Q&A game. If I haven't answered your question yet, I will!! Q8: (from Donna) My question(s) is, I know Celiac disease can be hereditary, does anyone else in your family have it? How hard is it with your busy life to be able to avoid wheat and gluten for Kennedy?
As far as we know, no one in our family has Celiac’s disease, but it is fairly common in kids with Down syndrome. Almost all kids with Ds are tested for it at some point and Kennedy just happened to be one of the lucky ones! Fortunately she doesn’t have the official diagnosis of CD yet. Her GI basically said she is headed there and will have it someday so we should start the gluten free diet now. We were doing good until she was diagnosed with AML and we found out about the neutropenic diet which meant no fresh fruits or veggies which was 90f her food intake! SO we had to take her off the gluten free diet for now. Switching back is not going to be fun I’m afraid now that she’s gotten used to things like chicken nuggets grilled cheese sandwiches and pizza! We’ll readjust with time! Q9: (from Alethea) The comment has come up that another mother didn't use the blue chemo gloves to change her babies diapers. She felt if her baby was enduring the chemo inside her body then she could at least not use the gloves. Turns out several of us moms didn't use the gloves either. My question to you is did you use the gloves or not? I didn't because I wanted her to feel her momma's touch and know it was all gonna be ok.
A9: First let me say we are praying for that miracle for Cristina every day! I did read that comment from Lisa on Rayley’s page. When Kennedy was first diagnosed I was 8 1/2 months pregnant with Keeghan and they warned me to use gloves because they weren’t sure if it could cause harm to him. So I did. Once Keeghan was born though, I stopped using gloves. I hated feeling like another “medical person” coming at her with gloves, and I didn’t want to scare her. But shhhh don’t tell our nurses! Q10: (from Kristina) My question: Why all "K" names for your kids?
A10: Since I gave my real answer the other day, here are my fun answers lol.
Because we could only find one section of the baby name book.
Because all the other letters were taken.
Because variety is overrated. :o) Q11: (from Robin) How many times have you eaten at Taco Bell in the last few months and can you recite the menu from memory?
A11: Too many times to count! LOL Can’t they put something good like Chick Fil A down there?! I almost always get the same thing (how boring) so I don’t usually look at the menu. Q12: (from my mom) CAN YOU DESCRIBE FOR EVERYONE WHAT YOUR HAIR LOOKED LIKE IN 7TH - 8TH GRADE?? AND: How do you keep up with all of this LAUNDRY!! Ha Ha
A12: Yes… it looked exactly like every other teenage girl’s hair in the late 80s and early 90s :o) I never do laundry… when we run out of clean clothes I just go out and buy more! LOL And THIS is why I’ll never win the lottery!
WBC: 1.6 Hgb: 9.8 (after transfusion) Plt: 55 RBC: 3.40 Nt: .14 Today was another pretty good day. Keeghan went to see his urologist today and had his stent removed. I was just as happy as he was, I'm sure! I got to give him his first bath in a week and no more double diapering!! Dr. Brock said that everything looks good and to come back in one month. YAY! Kennedy is doing fine, her neutrophils are still dropping but they should go up again soon. My friend Christina flew in from Florida to visit for a few days. She has been having fun playing with Kennedy and praying Keeghan doesn't puke on her! LOL Here are the next 4 questions I was asked... enjoy! Q4: (from Vonda) Since Kennedy's diagnosis, just HOW many times have you had the time to actually SHAVE YOUR LEGS!!!!!!ha ha ha ha. You know how us mommies tend to put ourselves last, especially those gorilla parts!!!!
Hmmm I don’t think we’re allowed to have razors here. JUST kidding!! I plead the 5th… but I do get to shower almost every day! LOL Q5: (from Carey) We start course 3 on Tuesday and I've heard from another mom that it is yucky. Was it for Kennedy? Kennedy is almost done with her treatment right? You will have to let me know what it's like.
A5: We heard too that as the chemo accumulates it can make the kids more sick, more tired etc. Fortunately Kennedy has handled each round of chemo just about the same. She has usually has a few tired days and a few days where she doesn’t eat much but overall she’s done really well. That being said, she is not on the regular AML protocol. She had a reaction to the Ara-C so they had to substitute with Etopiside (VP-16). She did not receive the higher doses for round 5 & 6 like she would have with Ara-C either. Whether this is OK or not remains to be seen!
Kennedy is DONE with chemo! :o) In some ways I feel like this time just flew by and in other ways I feel like this summer has lasted a decade! It is going to be strange getting to stay home longer than 10 days and getting back to a routine. We’ve gotten used to “hospital time” where it’s no big deal if we stay up till 2am and sleep till noon! (Kind of reminds me of my summers when I was a teenager!) We pray for Rylee every day and we can’t wait to see your “No more chemo” update! :o) Q6: (from Tina) Have you ever had someone say Oh i know how you feel, and you just want to scream NO YOU DONT!!!!!??
How does Kennedy understand whats going on?
Why do you think God has given you so much to handle? ( though we always say he never gives us more than we can handle sometimes i wonder lol)
A6: Actually most people have said “I can’t imagine how you feel” except those who are going through this too and they really DO know how I feel! Now there have been a few surgeons that I could just throw out the window… a couple residents too… one day I’m going to teach a course for doctors called “Bedside manner 101” or “How to talk to parents without demeaning them” or “Parents really AREN’T stupid” or “Just because I didn’t go to medical school doesn’t mean I don’t know MY child”. Look for these chapters and more in my book someday! LOL
For the most part Kennedy doesn’t understand what is going on, which is a good thing! We have some friends up here who are older and DO know exactly what is going on and it has to be so scary to hear you have cancer and that you could die. I’m so thankful that Kennedy is young enough to take this all in stride and not ask the tough questions. She truly loves it here. The nurses spoil her, she has friends, the play room, almost undivided attention from mom (darn that Keeghan getting in her way and stealing her thunder! LOL) She has no problems with taking her medicines, helps the care partners with her vital signs and doesn’t seem to mind the IV pole too much though she is always happier when she’s unhooked and can get away from me!
I actually really hate the saying “God will never give you more than you can handle” and I don’t believe it’s true. I DO however believe that God will never give us more than HE can handle. I don’t know how I would have gotten through any of the stuff Kennedy has been through without Him. Do I wonder why He has chosen me to be Kennedy’s mom? Every day! But I am SO thankful that in his infinite wisdom He gave her to me. She has taught me so many wonderful things and I feel privileged to be her mother… through sickness and health. She makes me a better person. Q7: (from Susan) I do not know how many children you have and if any are of school age. This is my question how are your other kids coping with their world turning upside down and feeling that for sure they have lost one parent and don't feel that they even have 80f the other. How do you manage to get homework, extra curricular activities etc. flowing when it truly seems that we have totally lost control of our lives? I am not saying that everyday is a bad day, but I still feel like my older children are just waiting for me to leave for the hospital with Carter for weeks on end at any given month and that they see it as I am abandoning them. Does this apply to your family?
A7: We have 4 children. Kassidy is 7 and in 2nd grade and Kameron is 5 and in Kindergarten. Kennedy is 3 and Keeghan is 4 months. Kassidy and Kameron have done well for the most part. They live at my mom’s house while we are inpatient and she is wonderful with keeping them busy and on their schedules. She carts them back and forth to soccer practice and games and makes sure their homework is done and everything… and she thought she was done parenting! HA! Kassidy usually gets a little weepy when we leave, but I set her up her own email address so I can send her messages and that helps. Both kids have amazing teachers this year as well who are looking out for them and comforting them when they need it. I also try to swap out with someone so I don’t miss their special days and so they can be my priority at least for a little while. Hopefully they don’t feel abandoned! I can’t wait to get back home with them full time though! More tomorrow!
WBC: 1.5 Hgb: 7.2 Plt: 37 RBC: 2.64 Nt: .17 Good evening! You may notice the new setup of the updates... sorry about that! My theory is, if it ain't broke - don't fix it! But I don't like change so that may just be me! LOL We had a pretty good day today. Kennedy needed a blood transfusion this afternoon, so those counts will be much higher tomorrow. This is the first one she's needed in a LONG time! She handled it well though. Keeghan had a good day too. He slept A LOT! I think he's playing catch up from his ditropan high! He gets his catheter out tomorrow at 12:45. I can't wait! SO I've answered all the questions I was asked today. I had a lot of fun! I don't want to overload you all so I'll break them up over the next few days. Here are the first 3. If you still want to ask a question feel free! Thanks for reading! :o) Q1: (from Renee) Ok so almost every time we are on the phone Keeghan has a major diaper blowout lol.. How often does he do that a day and what are you feeding that kid lol??
A1: HAHA! He just seems to wait until you call! He eats whatever I eat I guess! LOL Must be all those chili cheese fries! Q2: (from Anne) I have read your care page faithfully since the start, but I haven't posted much. You are an amazing woman and you have handled all of this with such strength and grace. You are an inspiration to all. My question is what has been the hardest part of this whole ordeal and what has brought joy?
A2: Well… I think the hardest part has been the friends that we’ve lost… Cody and Charlie here, our friend Chloe and the others we’ve heard about through friends… Rayley, Hazel, Chance and so many more. Cancer sucks! As far as joy it has to be the wonderful people we’ve met… the nurses have all been amazing and the other families we have met have become wonderful friends who will always be close to my heart. Q3: (from Mimi) What made you name all your kids "k" names?
what is the difference between a port and a hickman line ?
How do you manage in the hospital with Kheegan and Kennedy?
A3: Well, when we were pregnant with Kassidy we couldn’t decide between Kassidy & Ashley. We chose a K instead of a C simply because it’s prettier to write! HA! Once Frank gave in and agreed on Kassidy we decided to do all K names. Kameron was going to be either Kaleb or Kobe and we couldn’t decide until one day the name Kameron came to us… and it has 7 letters like Kassidy! All the kids have K names with 7 letters and their middle names all start with J and have 4 letters. The girls end in Y the boys end in N, the oldest 2 start with KA and were born in November and the youngest 2 start with KE and were born in May. How’s that for planning?!
A hickman line is the same as a broviac and has white tubes that hang out of the skin. It has 2 lines of access so fluids and chemo can run at the same time (or whatever else needs to run). A port is completely under the skin and requires a needle to be accessed. Though I’ve heard with the emla cream it doesn’t hurt. They couldn’t use a port on Kennedy because of the type of chemo she was on. It can cause burns on the skin so they couldn’t risk the needle coming loose on the port and having the chemo spill under the skin. Clear as mud?!
Fortunately I usually have Frank or my mom here to help with either Kennedy or Keeghan. When one of them are not here we usually just hang out in the room. Sometimes a volunteer will come and take Kennedy to the play room. Sometimes… I go crazy! HA! That's all for tonight! More tomorrow! I am thankful for the people who donate the blood that helps my daughter and other kids all over the world.
Updating a little earlier tonight ;o). How was everyone's dinner at Chilis?! We took orders up here on 6A and got over $100 of food. We were all happy to help such a good cause! When I called to place the order they said they were getting slammed with business! YAY!!! Thank you to everyone who made a pepper for Kennedy! I have them all printed and will take a picture of them to post on here soon. So I took Keeghan off his ditropan today just to see how he would do and WOW what a difference! He took a long nap this afternoon and has been in a much better mood. He only had one spasm today so we're shooting for NONE tomorrow. Kennedy's had a pretty good day today, she played a bit, did music therapy and ate a ton of french fries! No counts today, so I'll see what they are at tomorrow. Last weekend Rascal Flatts had a concert here in Nashville and they donated the money from ticket sales to Vandy. They raised over $800,000. During their show they showed a video of their Vandy concert on the big screen... watch it close, you may see someone you know! Rascal Flatts - Every Day 2007 - Vanderbilt Add to My Profile|More Videos I am thankful for Chili's and Rascal Flatts and all the other people out there who help raise money for childhood cancer awareness!
September 24, 2007 at 12:50 AM CDT WBC: 1.5 Hgb: 7.4 Plt: 70 RBC: 2.67 Nt: .33 Once again I am late on updating! Keeghan has decided that sleep is not necessary. He has taken maybe two 30 minute naps today... right now he is fussing in his crib. My goal is to eat dinner before 2am! HA! Maggie, our nurse, looked up the medication that he's on (ditropan) and it can cause insomnia! I'll remember to thank Dr. Brock for that! ;o) At least I know this will be short lived. I'm not sure how long he needs to take the medication, but I definitely don't want his bladder spasms to get worse so he'll be on it as long as he needs to be I guess. Who needs sleep anyway? Kennedy's counts are slowly... very slowly... dropping. She felt pretty good today, no more nausea or anything. After her late night last night she slept till 1:00 this afternoon so of course she is still up now! Maybe we should all climb in her tent and roast marshmallows... I'm sure I can find a match somewhere LOL. Thanks to those of you who posted questions! Keep them coming! I will answer them soon. Don't forget to eat at Chili's on Monday night! This is a nationwide thing, so go to your local Chili's and help raise money for childhood cancer research. You can also go to createapepper.com and make a pepper for Kennedy! Be sure to share the code with me if you do so we can print it! I guess that's it! I'm off to try to eat! I am thankful for a sleeping Keeghan... I know he'll get there eventually!
WBC: 1.9 Hgb: 7.4 Plt: 95 RBC: 2.70 Nt: .56 OK so I'm a little late on my update tonight, sorry! Kennedy took a very late nap and she is still wide awake! Keeghan is too for that matter. So... we'll be sleeping in till noon tomorrow, I'm sure! Kennedy was feeling MUCH better today! She ate well and was in good spirits. She has decided over the last few days however that she doesn't like meat anymore. I don't know why, but whatever! They say chemo can do crazy things to people! As for Keeghan, he's been having those bladder spasms a lot more today. He woke up screaming from them a couple times, or he'd be just fine playing and then freak out all of the sudden. Poor baby! There is not much we can do to help him. Hopefully these won't last long. Before I forget, on Monday night Chili's is donating 100f their proceeds to St. Judes for cancer treatment. No, Kennedy's not treated there, but tons of other kids are and the docs here have consulted with them about Kennedy a couple times. SO PLEASE when you pick your kids up from school or after you get off work, take a break from cooking and go eat at Chilis! While you're there, decorate a pepper for Kennedy! We're still going to be here in the hospital so I'm sending Frank to get take out... I'm so looking forward to my chicken tacos! YUM!!! OK so one of the moms of another child we follow through carepages just did this game on her son's page recently and I thought it was a neat idea so I'm stealing it! (Hope you don't mind Mimi!) Now that Kennedy's treatment is over (almost anyway), I challenge everyone reading this to ask me one question. It can be a question about Kennedy, her treatments, me, Frank, one of the other kids, whatever you want to ask. If I can't answer it on here I will probably just send you an email, but otherwise I'll post all my answers in a few days. Also, if we don't already know you, please tell us how you found Kennedy's page! We love to know who's praying for us! I will send a free t-shirt out to the funniest, the most difficult to answer and the craziest questions. I know there are tons of people who have told me they follow Kennedy's page but never know what to say, so here's your chance! :o) OK I am off to get these kids settled down so I can go to SLEEP! Good thing I napped this afternoon with Kennedy! I am thankful that Kennedy felt better today and ate good!