Hello from home!!! We actually got back into town around 11:00 this morning. I went to the kids' school to drop off the finished projects I was working on with them then got lunch and we ate at my mom's house while she vacuumed my house and got it all ready for us (thanks mom!). Frank went home and unloaded the van while Keeghan and I took a nap on the couch. We got back to our house about an hour ago and kids are up watching a movie now. We are home this time until September 13th! YAY! Then we go back in for Kennedy's LAST round of chemo! As long as she doesn't relapse we will be DONE by mid-October except for monthly check ups at the clinic. That we can handle! :o) We received word last week that Frank will be deploying with his unit at the end of the year. He will be gone for 15 months this time. They were debating on whether or not he would go due to Kennedy's illness, but since her treatment is over they decided he should join his unit. We are looking at this as a blessing. If he weren't going it would mean that Kennedy was still sick, still in treatment, but since she's doing so well life can go back to "normal" (whatever that is!) and that means Frank does his job. They will of course send him home if the need arises, which we pray every day it won't! Yesterday we met with our wish granter for the Make A Wish Foundation. We of course chose Disney for our little princess! We decided to do Disneyland instead of Disney World because, let's face it, we're Californians at heart and we have people to see! SO all our CA friends and family, be looking for us in May! Frank will be able to take his R&R at that time so he won't miss out on this amazing gift! Anyway, I guess that's about it. Continue to pray for Kennedy that she stays well during her time at home! Don't forget about all the other 6A families too! I'll post again soon! I am thankful for home and my warm comfy bed that's waiting for me!!
WBC: 2.3 Hgb: 7.4 Plt: 355 RBC: 2.56 Nt: .12 Someone tell Kennedy her counts are going in the wrong direction!! We are still here in the hospital... mostly still waiting for her to be 48 hours fever free, which she hasn't had one again since the other night and nothing has grown on her cultures, so we should be good to go there... however, if her counts go down again tomorrow, we'll have to stay due to those! Very strange! We're looking at the glass half full and slowly starting to pack... BUT we're being realistic and only packing things we can live without if we are staying one more day! HA! We gave Keeghan his first taste of cereal tonight... he wasn't too sure what to think! He kept coming back for more though! Then Kennedy decided she was being left out sooo... Now before you say I'm so mean, she LIKED it! LOL As far as the theory of it making him not puke, there are a couple nurses up here who can tell you that is NOT accurate... sorry Maggie and Jessica! Anyway, that's about it for tonight. Hopefully I'll be posting tomorrow saying we are on our way home... or maybe I'll even post FROM home! I am thankful for "firsts". This was the last time I will ever give one of my babies their first cereal... but it was fun!
Hello again, Sorry for 2 updates in one day, but I have some things to say, so here I am. First, Kennedy has been fever free so far all day. I know from past experience though that she tends to spike at night, so please pray her temp doesn't go up tonight so we can go home on Friday. Keeghan's appointment went ok. The NP wasn't too sure what to think about him still puking so much. At the last appointment she said she wasn't going to worry as long as he was gaining weight. He is still gaining, but he's dropped from the 25th percentile to the 13th percentile on the growth chart, so that is a little concerning. They have tested his stool for blood and that has come back negative so she doesn't think it's a milk allergy. I asked if it could be the same blockage in the intestine that Kennedy had, but she said she highly doubts it as that blockage is mostly a Down syndrome thing. Still, we have to take him back in one month for a weight check and if he is not gaining like they want him to they'll do an endoscopy. Talk about dejavu! I didn't think I'd have to do this GI dance EVER again! In the meantime she wants us to start him on cereal, so YAY for that! We also got some sad news today. Heaven gained another angel this morning. Hazel Anderson lost her battle with AT/RT, the same tumor that Cody and Rayley had. This tumor is nasty and doesn't spare many lives. I take comfort in knowing that Hazel is now in heaven playing with Cody, Rayley, Charlie, Chloe and AJ... cancer free, but my heart just breaks for her family. Please keep Hazel's parents, Bryan and Heather, and her sister Hana in your prayers as they try to find their way without their beautiful daughter. If you would like to leave them a message their carepage is HazelCamille. I am thankful for baby Hazel... even though I will NEVER understand why the Lord chooses to take these babies so soon, the impact they leave on earth is amazing.
8/28/07 WBC: 1.9 Hgb: 7.8 Plt: 302 RBC: 2.69 Nt: .13 8/29/07 WBC: 3.0 Hgb: 7.6 Plt: 352 RBC: 2.63 Nt: .21 So... I'd like to say that we're going home today... and with her counts we very well may have had that chance, but Kennedy decided that she wanted to hang out a couple extra days and spiked a 101.9 fever last night. We kind of wondered what was up when she took a nap yesterday, that's so unlike her. Then since she woke up from that at 6:00 PM I thought for sure she would be up at least until 2:00 AM but she clonked out around 11:00. When I went to move her to her own bed (she fell asleep sitting on the couch with me) she felt warm and thus the journey began... temp was taken, cultures were drawn, antibiotics and tylenol were given and we are now here until she's 48 hours fever free and has clear cultures. So far so good. It's almost noon now though and she's still sound asleep! This is late, even for her! SO Pray that there is no infection in Kennedy's body and pray for no more fevers so we can get out of here and enjoy our weekend holiday weekend at home with the kids! Frank is on his way back up here right now so I can take Keeghan to his follow up GI appointment. I don't anticipate it being very productive, but I guess it's best to go. I'll update again soon! I am thankful for rain... I love hearing the thunder outside!
WBC: 1.9 Hgb: 7.6 Plt: 180 RBC: 2.66 Nt: .11 Well Kennedy's counts are bouncing around again... neutrophils are down, platelets are up, and the rest of her numbers are kind of just hanging out. SO Praise God her platelets are up because Kennedy decided to try them out tonight and see how they are functioning. She was out walking in the halls and fell and her face smashed into the floor causing her tooth to cut her lip. It bled... and bled... and bled... for over an hour. Her nurse, Tenisha, had a fun time trying to keep pressure on it while Kennedy did everything in her power to push the washcloths and ice away. They were just about to order her some platelets to help stop the bleeding when she finally fell asleep in my arms and the bleeding slowed. She is out cold now, about 2 hours earlier than normal. Needless to say (why do we say "needless to say" and then still say it? Hmmm) it was not a fun evening and I'm very glad she's ok! She now has a fat lip to go with her black eye! Anyway, I had a good time today at the kids' school. The kindergartners are so cute! I could never be a kindy teacher, but I do like to go hang out with them! My mom said Kassidy has been kind of weepy tonight... not sure if she's not feeling well or maybe my visit home made her go on an emotional roller coaster, but if you think about it say a little prayer for her too. I guess that's it. I'm going to try to get Keeghan to sleep and settle in for bed... I'm not used to getting up so early, I'm worn out! HA! I'll post again tomorrow. I am thankful that Kennedy's lip stopped bleeding and that she's sleeping soundly right now.
8/25/07 WBC: 1.6 Hgb: 7.6 Plt: 60 RBC: 2.67 Nt: .18 8/26/07 WBC: 1.7 Hgb: 7.5 Plt: 104 RBC: 2.62 Nt: .20 Hello from home! It looks like Kennedy's counts are on the way up... her monocytes jumped from 6.9 yesterday to 12.3 today (these are the baby neutrophils that come up first). Her platelets also made a huge jump overnight! YAY! I am guessing we'll be out of there either Wednesday or Thursday, but her counts have crashed after climbing before, so don't hold me to that! Anyway, Kennedy is at the hospital with Grandma and she is keeping her running! It's really crazy how much more she is walking now, if you let her off her bed she is out the door, ready to socialize! Something tells me it's going to be hard to get her to sit still! Hopefully they will both get a good night's sleep tonight! Frank and I had a really fun day with the rest of the kids. We went to the mall and had lunch and did a little shopping and then went to play miniature golf. None of us are very good, but we had a great time and laughed a lot! We came home and went swimming for awhile and then ate dinner and now they are fast asleep. Kassidy said she really likes spending time with her family. I'm going to remind her of that in 7 years or so! :o) I went through the kids school papers tonight, Kass is doing so great! She has such a good imagination!! She did have one paper though where she drew a picture of a person and she wrote on top, "Dad, are you the tooth fairy?" Ohhhh no! I hope she keeps believing for a little while, but if she asks we won't lie... of course DAD isn't the tooth fairy anyway! ;o) Kameron reminds me so much of my little brother... he's VERY stubborn and likes to think he knows everything! He's not liking the fact that he has to write his name with only the first letter capitalized and the rest lower case. He prefers to be KAMERON. It's been frustrating for him to change his ways... such is life my sweet boy! And Keeghan... he was SO good today, even in the car! He loved being out and about! We took him in the pool this evening and he had a great time! He kept looking at Kass and Kam like "Who the heck are you and WHY are you kissing me?!" HA! Anyway, tomorrow I will spend the day at the kids' school and then we will drive back to Vandy so I can see my princess. I missed her being with us today! I'll update again soon... Keep praying for Kennedy and those counts! I am thankful for my 4 amazing, wonderful kids and my awesome mom who helps me be in two places at once.
August 24, 2007 at 11:57 PM CDT WBC: 2.1 Hgb: 7.8 Plt: 63 RBC: 2.72 Nt: .48 Hello everyone! Not much to report tonight, Kennedy is doing well. Her appetite is good and she's drinking TONS! She has been walking all over the place and she's been in a good (but very stubborn) mood! HA! No news on the test from the mouth sore... I'm scared to ask! LOL I figure no news is good news... right?! The sore is completely gone now anyway. Her counts are still on the way down as you can see so hopefully they'll bottom out soon and then start climbing again. Her platelets aren't that low really but for some reason she is covered in bruises today! Poor kid looks like we beat her! I'll be interested in seeing what they're at tomorrow. They're drawing labs every morning now so I'll keep you posted. On Sunday Keeghan and I are going to go home and spend the day with Kass and Kam while my mom stays with Kennedy. Then I will take them to school on Monday and spend the day there while I do a kindergarten project with the 6 kindy classes. This is my 3rd year doing this and I didn't want to miss it!! I'm sure my mom will have a GREAT time with Kennedy! Yesterday was one year from the date of Kennedy's tonsil and adenoid surgery! For those of you following her back then, remember what a fiasco that was?! From the PCCU to a couple evil doctors to finally getting her to drink almost 2 weeks later... I was reading back through her journal on the caringbridge page and remembering how stressed I was!! And now here I sit... on the oncology wing... not stressed at all! Go figure! LOL Anyway, I guess that's it for now, I'll update again tomorrow. As always, thanks for praying for Kennedy!! I am thankful for Kennedy and her funny fiesty moods... even if she IS stubborn! :o)
WBC: 1.6 Hgb: 8.8 Plt: 111 RBC: 3.09 Nt: .65 Kennedy's counts are falling down, falling down, falling down... Kennedy's counts are falling down bye-bye veggies! Here we go on the downward spiral! Kennedy is doing ok, she hasn't been feeling too great the last couple days and today she even threw up once... she got some phenagren and felt much better. She hardly ate at all yesterday but she ate a pretty good lunch today, thank God! We have to start calorie counting today so pray she continues to eat!! She has a little sore on her bottom lip that they tested yesterday for herpes of all things! If it comes back positive we get a one way ticket to isolation... again! SO pray it comes back negative. At least we're nearing the end of our admission this time! The nurses said that this is somewhat common when kids are so immunosuppressed. We shall see! Monday night I went back to Clarksville to Kameron's Kindergarten meeting. I know the parents of several of the kids in his class, so field trips and class parties will be extra fun! He went back to school today for his second testing day. My mom said he had a good day... Kameron said he did something wrong but he can't remember what it was! LOL How convenient! Today we got an extra special surprise here at Vandy. Rascal Flatts came and did a concert for some of the families here, a few of the Disney characters came as well. Unfortunately Kennedy wasn't allowed to go down because of her counts, but Keeghan got to go and totally enjoyed the music... he wasn't too sure of the characters though lol. Here are a few pictures: Until next time, Renee I am thankful for the rich and famous who donate their time, money, and friendship to help our kids. Rascal Flatts raised over $900,000 for VCH last year. How awesome!
WBC: 3.5 Hgb: 8.5 Plt: 169 RBC: 2.93 Nt: 2.41 Welcome to Count Watch August '07! We interrupt this journal to keep you informed on the latest news with Kennedy's counts. While her red blood cells have taken a little dip, her platelets are holding steady. Her white blood cells and her neutrophils are down slightly, which is normal for this time of month. Expect to see the downward trend continue into the week. The weekend forecast is looking very, very low with a neutropenic diet in sight. Watch for fresh fruit and veggies flying out the window. Internal temps were slowly rising last night as the appetite quickly fell and low energy ensued, but all seems almost back to normal today. Precautionary blood cultures were drawn with results pending. Stay tuned to this channel for further Kennedy news and her latest counts. We now return you to your busy day. Signing off, Renee Garcia (Momologist)
Kennedy had a pretty good day today, you'd never know she just had surgery! She spent lots of time riding in the halls on her car and playing with her babies. After an evening cat-nap with daddy, she's wide awake right now watching Signing Time! She is on her last bag of chemo for this round and should be done late tomorrow afternoon, then we can unhook her so I don't have to chase her with the IV pole! HA! The plastic surgeons feel confident now that Kennedy's skin is fine and did not burn from the chemo. They dismissed her from their care today. Praise God for that! That site is still pretty red, but her new line looks GREAT!! He stitched it in REALLY well. This line BETTER stay in! And just for laughs, here is a picture of her wearing the ice pack. She's pointing at it saying "Ohhh WET!" My little ghetto baby! HA! Also, here's a shameless plug :o). As many of you know I have an e-store with Down syndrome awareness products, which sadly has gone unattended for awhile now. A couple months ago though we designed Cancer Sucks! shirts and tonight I went on a designing binge with the help of my friend Eva and put up a bunch of new cancer designs. You can check them out here:Cancer Awareness Products. All proceeds from this section go back to the playroom here on 6A. On a more serious note, please keep Rick and Kristy Newbold in your prayers on Saturday as they hold Chloe's celebration of life. This has to be one of the hardest days for any family. Also, Camryn Owings had surgery today to remove the tumor from her brain. She is in ICU and is doing well. Her doctor said he was able to remove the whole tumor. Please keep her in your prayers that she will be back in remission and stay that way forever! Also, there is a new little boy up here named Dylan, he has Down syndrome and was diagnosed last week with Lymphoma, which is pretty rare for kids with Ds! He's feeling pretty yucky right now, so keep him in your prayers that he starts feeling better soon. I guess I'm off to coax Kennedy to sleep and maybe read for a bit before bed. Until next time, Renee I am thankful Kennedy is feeling good today and thankful that the chemo didn't cause her skin to burn!