Date WBC Hgb PCV Plt RBC Nt 06/23/07 2.7 10.0 31 238 3.48 1.02 06/24/07 2.5 9.3 29 196 3.36 1.02 06/25/07 2.4 9.3 28 169 3.16 1.02 06/26/07 2.2 8.7 27 154 3.06 .86 06/27/07 1.9 8.4 25 103 2.93 .47 06/28/07 2.0 8.5 26 35 2.97 .37 06/29/07 2.3 8.7 26 61 2.99 .16 06/30/07 1.7 8.0 23 71 2.75 .08 07/01/07 2.0 7.9 23 114 2.74 .09 As you can see, Kennedy's counts are kind of all over the place. Yesterday they told us we would probably be going home on Monday since her counts were climbing. Today though they took another dip which is ok! They'd really like her to drop to 0, though that has not happened in the previous rounds of chemo. Kennedy had to go to the PCCU (Pediatric Critical Care Unit) this morning for a procedure because yesterday we noticed the stitches let go on her Hickman line (shocker there, right?!) It didn't fall completely out thank goodness so they just sedated her and stitched it back in. The surgeon said that even Houdini couldn't get this line out. Apparently he doesn't know Kennedy very well! ;o) Seriously though, pray this line stays put! When we have to come back for round 4 of chemo we'd LIKE to come in through clinic instead of through surgery! Please keep our little friend Mya in your prayers. She is 10 months old and has ALL and AML and the MML gene. She is 11 days post transplant and is dealing with really high fevers and just feeling yucky. The nurses assure her mom, Katrina, this is all normal, but it's so hard to watch your baby be miserable.Mya's Page Charlie's service is tomorrow... Frank's going to stay here with the kids and my mom is trying to figure out how she can go with me too. She got to know Kim and Charlie pretty well the times she was up here. Several of the nurses are taking off work to go too. Please keep Chad and Kim and their families in your prayers, especially tomorrow. It's going to be so, so hard. Until next time, Renee I am thankful that Kennedy's line didn't come all the way out. I REALLY hope 3 is our limit!
What a sad, emotional, exhausting, depressing day it was around 6A... I know it says Friday, but I haven't gone to bed yet, so it's still Thursday to me. I think I am in shock... or denial or something. I just feel numb inside about Charlie and I keep expecting to see him out walking the halls. Kennedy was out riding her car earlier and rode down to the playroom. She went right inside and looked around and said "Charlie!?!" The last time she was in there Charlie was in there too playing with his Grandma. Then she rode by his room and stopped and waved and said "Hi Charlie!" And just looked around like "Where is he?!" Man it just breaks my heart. She can't understand. She misses him and doesn't even know why. I miss him and don't know why! Cancer SUCKS!! Charlie fought so long and so hard... and so did Chad and Kim and we prayed for victory... they all deserved it. I'll never understand why God decided to take Charlie home, and I'm trying hard to remember that He knows best and this is all part of His plan, but it still sucks and I'm still sad and angry and my heart just breaks for Chad and Kim and especially KK who will only know her awesome big brother through pictures and stories. NOT fair! Thousands of tears have been shed all over the world for the Porter family today. Thousands of prayers have gone up. Charlie, I hope you and Cody are having a blast in Heaven right now playing with the other Angels and doing all the things your earthly bodies would not let you do. I picture you right now sitting down to a feast of sandwiches and minestrone soup. We're so glad you are cancer free. You'll be with us always. Until next time, Renee I am thankful that the photographer who came to 6A 2 days ago got awesome pictures of Charlie with his family. I am thankful that Chad, Kim & Kaylond were able to walk the survivor lap in honor of Charlie at the relay for life walk... at least one time. I am thankful that Charlie was here to celebrate his 3rd birthday. I am thankful Chad came back to the hospital in time. I am thankful for the nurses, care partners, therapists and especially Jenny, the music therapist, who love Charlie so much, they made his days here the best they could be. I am thankful for my husband who took over the kids today and just let me BE. I am thankful for Charlie, for his life, and for my friend Kim.
It is with a sad heart that I come to you again from this sucky cancer world. Charlie Porter lost his battle with AML this morning. Heaven gained yet another beautiful angel. Our hearts hurt so much right now for Chad, Kim and Kaylond. We love you guys, and we're here for you always. Please keep the Porter family in your prayers. Care Pagessite name: CharliePorter
Hello everyone! Kennedy is doing about the same... her mouth has really been bothering her. They gave us some "Magic Mouthwash", a combination of Maalox, Lidocaine and something else I keep forgetting. It numbs her mouth pretty well so that helps. We're also doing mouth care with sodium bicarbonate several times a day, so hopefully we can keep it under control. She didn't eat all that much yesterday, but she's still drinking great. Her swallow study went well. She is still aspirating thin liquids, but we cut her thickener in half and she did not aspirate that... which she did at her last study in November, so we're getting there! They brought up a new kind of tape yesterday from the NICU to try around Kennedy's line. It lasted a whole 2 hours before it completely let go of her skin. *sigh* SO now she has an ace bandage wrapped completely around her. The good news is NO adhesive! BUT we have to take it off for a little while each day to let it breathe. We don't need any bacteria growing under there. They also gave us some ointment to put on the sores so we have to keep the bandage off until that dries as well. Hopefully this will be the thing that works for her! Here's her counts for the last few days... they were falling really slowly at first, but they dropped a good chunk yesterday. Now we're just waiting for them to drop more and recover again... in the meantime we just get to hang out. Date WBC Hgb PCV Plt RBC Nt 06/23/07 2.7 10.0 31 238 3.48 1.02 06/24/07 2.5 9.3 29 196 3.36 1.02 06/25/07 2.4 9.3 28 169 3.16 1.02 06/26/07 2.2 8.7 27 154 3.06 .86 06/27/07 1.9 8.4 25 103 2.93 .47 A photographer came up here to 6A last night to take pictures of all the kids, he was great!! The nurses got a preview today so I stole mine of course! LOL He took TONS of shots, I can't wait to see the rest! Take a look:
Today has been ok here, Kennedy's mouth is really bothering her. She's definitely in pain and keeps chewing on her hands and whining. We can't SEE any sores in there, but they may be in her throat. We are doing mouth care several times a day with some solution the nurses mixed up for us. Hopefully it will help keep them under control. They also gave her Lortab for the pain which seemed to help some. Besides that, we discovered a rash on her tummy tonight then when I went to change her dressing over her line I found horrible sores under there! We're using the ONLY tape we've found that doesn't tear her skin off so I don't know what we can try now. I gave her a bath and cleaned the site and reapplied a dressing trying to avoid putting the tape on the sores. The doctor on call came up to look at it and I asked about just leaving the dressing off completely but she said with her history of lines falling out that wouldn't be safe. *sigh* The actual spot where the line goes in is kind of red and I see a little bit of puss under there... the doctor said she would culture it if it gets worse. PRAY it's not infected! Tomorrow at 8am Kennedy has a swallow study downstairs. We are hoping her aspiration issues are getting better. How cool would that be if we could stop thickening her liquids?! I'm assuming we'll know the results right away so I'll update again then. Keeghan is being referred to GI for his reflux so hopefully they can help him. We'll find out tomorrow when that appointment is. OK I guess that's IT for us! LOL Please remember Cody Myers' family in your prayers. Jamie, Angela and Ben are on a trip in Florida. We pray they are relaxing and enjoying time with Ben. I am thankful for the care packages and cards we receive from friends, they always make us smile! :o)
All is well here! Kennedy has been keeping me busy driving her car around the halls of 6A while I chase her with her IV pole! Her chemo ended last night around 11:00 and they said they would unhook her from her fluids later today so she'll be wireless again! YAY! She woke up this morning with a lot of dry blood on her lips. Dr. Sarah looked in there and said it looks like she is getting mouth sores from the chemo. This is pretty common but we were praying she wouldn't have to deal with them! A lot of times this will make the kids stop eating because they hurt, so we need to pray that she keeps eating and drinking. We want to avoid that feeding tube!! Other than that she is doing well. My mom is coming up with Kass and Kam today and they said Kenn can go outside for a little bit to see them. I'll go take them to dinner after that while my mom stays with Kenn in the room. Keeghan is doing well too, he's still puking a lot but doesn't seem to be so irritable. He's smiling quite a bit which is SO cute!!! Speaking of him, he's awake and hungry so I'll end here. I am thankful that round 3 of chemo is over... half way there!!!
Kennedy is in remission! Her spinal fluid is completely clear and her bone marrow showed 2 percent Leukemia cells. Anything under 5 percent is considered remission. Now we just need to pray that she stays in remission. She is feeling pretty good today. She and Keeghan and I took a long nap this afternoon so we should be good to go until midnight at least :o). Anyway, short update today, but that's all I have to say!
I've been trying to update for the last few hours and the words just haven't come to me... I'm still not exactly sure what to say. Cody's service was beautiful. The chapel was filled with pictures of him. What a special, beautiful little boy. It was very apparent how loved and adored he was, not only by his family but by so many friends, therapists, nurses, other Vanderbilt families, and even people who never met him. It's amazing how such a little boy, who's life was cut so drastically short, can touch so many people. Thank you Jamie and Angela for sharing Cody with us. He will live on in our hearts forever. Kennedy had a good day today. She played with Daddy while I was gone and seems to be in good spirits. She is eating and drinking well and playing with her babies, so that's always good! Keeghan had a good day too. He went to my mom's house while I was at Cody's service and drank from a bottle with no problem. I was worried he wouldn't take it! It's bittersweet really, because that means he doesn't really NEED me, but I'm glad he wasn't crying the whole time either. Frank left a little while ago so he can go to PT tomorrow and then he'll be back here tomorrow evening. It's nice that he actually gets to come up this time! Anyway, I guess that's it. I'll update again when we find out the results from her bone marrow aspiration. I am thankful for my friend Lindsay. She's been one of my longest and most constant friends. Even though we haven't seen each other in a couple years, I know she's always there and she always finds special ways to show how much she cares about us. Happy Birthday, friend! We'll talk soon!
Hello from Vandy. Today has been an exhausting day. It started out with only a few hours sleep, which always makes me emotional. We got here right at 6am and got Kennedy checked in for surgery. Then all the doctors, nurses and anesthesia people came in to ask all their questions: "What is Kennedy having done today?" (You mean you don't KNOW?!) "When is the last time she had anything to eat or drink?" (10 minutes ago, because I'm mean and like to risk my child's life under anesthesia.) "Tell me about her past surgeries and medical history." (All of it? It may be easier for me to tell you what she DOESN'T have!) See? Emotional. One thing I DID tell them ALL though was that she absolutely cannot have ANY adhesive besides the foam tape. I thought I made myself VERY clear about it. I even went so far as to bring them a roll from home since last time they had a hard time finding any. I told at least 5 members of the team about her sensitivity to anything sticky at LEAST twice. So, imagine my surprise when I got back to recovery to find her with a clear tape dressing on! I immediately burst into tears (emotional, remember?) and the shocked charge nurse got an ear full... wasn't her fault, but man she heard it from me! She stepped into action right away and got the right dressing up there and they got it changed. The clear tape tore two holes in her skin though. I could have just strangled someone! The surgeon came in and apologized and said no one relayed the message to him... they just told him that he had to use the foam tape AFTER he put the tachederm on (which he stressed is not tape). Well DUH it's still adhesive, it's still sticky, it still tears her skin. What part of this did they NOT understand?! Anyway, they said they would investigate to find out where the breakdown in communication came from (because it sure didn't come from ME!). In the meantime Kennedy had to go through unnecessary pain. (Yep, emotional.) SO then we get up here to the room, we're on 6A again in room 6311... it's smaller than our other room, or set up different, or something. The bathroom is tiny, I can't fit Keeghan's pack n play in very well let alone the other 50 tons of stuff we brought so (have I mentioned yet that I'm emotional?) I cried. *sigh* As soon as a bigger room opens, we're moving. If this had been the ONLY thing to happen today it probably wouldn't have been a big deal... and it ISN'T a big deal now... I've had a nap LOL... but it was a big deal when it happened. Anyway, Kennedy is still sound asleep. She wakes up every so often and cries and then clonks back out. We have her in a regular hospital bed this time instead of a crib, we'll see how she does. They just came in to do an echocardiogram since one of the chemo meds is known to cause heart complications, and once the results are in they will start her chemo. They said if they can't start it tonight then they will wait for me to get back from Cody's service tomorrow and start it then. The results from her bone marrow aspiration and spinal tap should be back in a couple days. Please pray for Kennedy that she's not in too much pain when she wakes up. PRAY that three time's a charm and this Hickman line WILL stay in for as long as she needs it. Pray that this round of chemo is not hard on her little body, and that she doesn't get sick, but more importantly that it does it's job killing the cancer. Pray for Jamie and Angela and their families as they prepare for Cody's service tomorrow. I'll update again when I know more. Until next time, Renee I am thankful for the nurses up here who let me be emotional without making me feel dumb! Update 7:00 PM We got a new room!!! We're in 6304 now... MUCH better!
Kennedy is still feeling kind of yucky, but she slept all night last night after we gave her the vicodin. The diarrhea has stopped as well. She's just been very whiney today and keeps signing "hurt". We just don't know WHAT hurts. She's not holding her head anymore like she was last night. We did go over to my mom's this evening so the kids could swim. I got a couple pictures and then my camera died! I don't know what's going on with it. I drove home really quick to get Frank's camera, but by the time I got back she was ready to get out. I'll share what I do have soon though. Tomorrow we are just going to hang out and enjoy our last day at home. We have to be back at Vandy at 6am on Monday. That has to be some form of cruel and unusual punishment! I'll let you know what room we're in once we get settled. Happy Father's Day to all you fabulous dads out there! I am thankful for my dad and my grandpa and my husband... where would we all be without dads?! Not here! LOL
Well the clinic was a quick in and out today... they did a chest x-ray and everything was fine, none of the hickman line was left in her chest (thank God for that!). We came back home and spent the rest of the afternoon laying low. Tonight around 9:00 Kennedy started crying really hard, holding her head and saying and signing "Owie!" (hurt). She had no fever but we finally gave her some tylenol. When that didn't help we called oncology... for the second time today! Dr. Prasad said it could be any number of things, and told us to give her some Lortab and if she was still crying in 30 minutes we would have to take her in and they would admit her. As I was on the phone with her, Kennedy had a really bad case of diahrrea. The Lortab knocked her out though and she is sleeping hard right now, so I don't think we'll be going in tonight. *sigh* They told us this afternoon since her line is out she can go swimming... pray she starts feeling better so she gets her chance, it may be her only one this summer!
OK so this is how our morning went. Keeghan woke up, of course he puked everywhere, so I got him cleaned up and went downstairs. Kass and Kam followed me down and went to play in the play room. Kennedy was still sound asleep. So I'm checking emails and hear Kennedy wake up. I go up to see her and she's sitting on her bed playing with her dolls, "Good Morning!!" I say. I head over to pick her up and see a white thread sticking out of under the arm of her nightgown and think, "oh no, it's coming unravelled." Then I touch it. It's not a thread. Even though the tape it still attached on 3 sides and the ends are in her pouch, her Hickman line has somehow come out AGAIN!!! I have NO idea how it could have happened, but it looks like it is cleanly out. Still, we are going into clinic today for a chest x-ray just to make sure none of it is left inside her chest. Then they will talk to me about getting her THIRD Hickman line in so she can start chemo again on Monday. I could just cry. I know it's not important in the grand scheme of things but we were SO close to making it through this break with her line still in! *sigh* My friend Angela called me though while I was waiting for a call back from oncology and she said Cody had FIVE Hickman lines over the course of his treatment due to them breaking or getting infected... I'm hoping Kennedy won't break his record! LOL Anyway, I'm waiting for Frank to get home so he can go with us and then I'll update when we get home. Never a dull moment! I am thankful that Hickman lines come out without tons of blood... we would have both freaked out!
It is with a sad and heavy heart that I post this update. Cody Myers passed away at 10:05 this morning. Please keep Jamie, Angela, Ben and the rest of their family in your prayers as they say goodbye to Cody. We know he is in Heaven and will never again be in pain, and for this we are thankful. carepages.comSite name: CodyMyers1
Hello everyone! First Keeghan: We saw his urologist yesterday and he scheduled Keeghan's surgery for September 19th. It will be a same day surgery and they may have to leave a catheter in for a few days. (umm OUCH!) He weighs 9 lbs 4 oz. Guess that's it on him! Kennedy did a little better yesterday, no more throwing up, thank goodness. She still wasn't totally herself though, she slept a lot and was just really whiney. She's still sleeping right now so we'll see what today brings. We are going to my mom's in a little bit so Kass and Kam can swim with some of their friends from school, other than that we are just laying low today. Sounds good to me! As always keep Cody, Charlie and the rest of our 6A friends in your prayers. I am thankful for lazy days and being able to take a shower in my own bathroom!
Today has been a rough day. Kennedy fell asleep last night around 6:00 and woke up a little after 8:00 this morning feeling pretty yucky. She ended up throwing up a few times and has been sleeping most of the day. She has no fever at all, but I called oncology anyway just to see what they wanted us to do. They called her in some Zofran which has seemed to stop the throwing up, but she's still really out of it. She's taken a few sips of water and that's about it. If she's not better by morning I'll take her into the clinic. We don't need her getting dehydrated. I just wish I knew what was going on. Seems like if it wouldn't be from the chemo this far out since she isn't ever sick with it, but if it were a virus or infection, it seems like she would have a fever. Kass and Kam are being troopers. We have been telling them for 2 days now that we are going to go to the movies and yesterday Keeghan had a horrible day and now Kennedy today. Kassidy said, "It's ok, I know Kennedy doesn't feel well." And fortunately Kameron seems to follow suit. Hopefully we'll be able to get to that movie soon. Keeghan has an appointment with the urologist at Vandy tomorrow at 8:45 to talk about his hyposadius. He's seeing Kennedy's urologist, Dr. Brock, so at least we already know we like him! Cody Myers' body seems to be wearing out on him. My heart just breaks for his family with every update. Please continue to keep him in your prayers along with his parents, Jamie and Angela, and his baby brother, Ben. Pray that Cody will remain comfortable and out of pain. Pray for Jamie and Angela as they prepare for the next phase of this journey. It's all just so unfair. Until next time, Renee I am thankful for on-call doctors available even on Sundays when we need help.
Hello from home again!!! This time we are ALL home though :o). Kennedy's counts are on the way up and they let us come home yesterday. We get 10 days here and then Kenn goes back on June 18th for round 3 of chemo. The doctor said that her counts are high enough that after this weekend she can eat fresh fruits and veggies again! She had been on a neutropenic diet since her first round of chemo which means no salad... which is one of her favorite foods! So we're looking forward to letting her enjoy again... only to be mean and take it away again in 10 days, but still! Anyway, we're not really sure what adventures we're going to try this time, but I'm sure I'll have lots of pictures and stories to post! BTW, I won the worst mom of the year award this morning. Kassidy lost a tooth yesterday (and we were JUST talking about this on 6A the other night) and her tooth fairy FORGOT to come! How horrible is that?! UGH! I told her she must have thought Kass was still at Grandma's and went there so she'd have to try again tonight. Kassidy said maybe another little kid lost his tooth too and the tooth fairy couldn't do both... so I'm off the hook but I still feel terrible about it! *sigh* Something tells me she'll be getting a little extra from the tooth fairy tonight! Please please pray for Cody Myers! He's not doing too well today. We're praying for that miracle!! Until next time, Renee I am thankful we are all home for awhile and for a daughter with a good imagination.
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Welcome to my blog where I take on day to day life with my five amazing children: Kassidy, Kameron, Kennedy, Keeghan & Kellsey, and a husband in the Military. Join us as we face issues with Down syndrome, Leukemia, Deployments, and every day life with 5 young kids! You'll be in for the ride of your life!
My name is Renee, I am 34 years old, I am married to the Army... oh wait I mean I'm married to a Soldier, my hero. Same thing right? I am a misplaced Californian who lives in Colorado by way of Tennessee. I am a mini-van driving soccer mom... I always knew I would be! I am blessed to be able to stay home with my 5 amazing kids. Kassidy: my beautiful, too smart for her own good, funny, dramatic 13 year old who is starting her teen years with grace. Kameron: My high strung, smart, artistic, creative, silly, sometimes mysterious 11 year old who loves musical theater and acting. My 8 year old diva, Kennedy: who will most often be found dancing or dreaming of Justin Bieber. She's destined for the stars! Keeghan: my crazy, funny, silly, handsome 5 year old monkey who loves to ask me a million questions all day long; and our 6 year old Ukrainian Princess Kellsey who is finding her way in the world as she battles Reactive Attachment Disorder. Our goal for her is to make sure she knows she is always loved, wherever that may take her... I'm so incredibly blessed.