*sigh* Cancer SUCKS!!! What else can I say? Once again one of our new family members in this dumb cancer world has received bad news. Charlie will be 3 next month. He has AML just like Kennedy. He and his mom and dad have been here for a LONG time... Charlie is 77 days post transplant and his Leukemia has returned. Due to other treatments he has been going through, his body cannot handle the toxicity of more chemo. Chad and Kim, Charlie's parents, were given 2 options: either do nothing and let the Leukemia take over or try an antibody that is supposed to attack only the leukemia cells, pray like never before that he goes back into remission and then give him a "boost" of cells from his donor. Charlie needs a miracle. The whole family does. Please keep Charlie, his parents, and his little sister Kaylond in your prayers. You can visit their page atcarepages.comand put in the name CharliePorter. Tell them Kennedy sent you. If you haven't registered at care pages, you'll have to sign up for a free account. We're praying guys... always! PS Don't forget Cody Myers and his family as well!!
Sorry it has taken me a few days to update. Mr. Keeghan's reflux is getting to him BAD. Neither one of us has gotten much sleep the last few days. He started on Prevacid yesterday, but I've been told it takes a few days to kick in. We're praying when it does he'll feel MUCH better (and that he won't go through so many changes of clothes... his AND mine!) Kennedy is doing well. She had her last chemo treatment for this round on Sunday night, so now she is just hooked up to fluids and on her antibiotics and anti-nausea medications and the Lyrica for her hand pain. The Lyrica seems to be helping a little. She only complained about her hands twice yesterday and not at all today so far :). She has been sleeping GREAT thanks to the phenagren they've been giving her before bed time. I'm glad she is, because sleeping through Keeghan's moaning and groaning can't be easy! My mom came with Kass and Kam on Monday and Kennedy got to go to the outside play area for about 15 minutes. It was hot out so she was happy to come back in. My mom stayed with Kennedy and Keeghan while I took Kass and Kam to the food court for lunch. It was nice to spend time with them. Then they went and played in the sibling play room for a couple hours while I spent time with my mom, got some laundry done and showered. I can't wait until Frank can come back up here! It makes doing things like laundry and showering much easier when he's here to stay with the kids. Anyway, now we are just waiting for Kenn's counts to drop and then recover so we can go home for a bit before round 3. It took exactly 2 weeks for this to happen last time, so we'll see how it goes now. As of today here are her counts: WBC: 2.1 PCV: 26 Plt: 162 Lym: 23.1 Neut: 75.0 I am thankful that Kenn doesn't seem to be feeling sick anymore, and I am thankful that my mom was able to come up with the kids. I miss them!!! Just trying this out...
Kennedy had a pretty yucky day yesterday. I think the chemo meds are finally hitting her. She woke up gagging and I thought, "Oh no here we go!" She never did throw up though. Still she was pretty sickly most of the day. She laid around a lot and whined. The nurses gave her Ativan (sp?) for nausea which knocked her out for a 4 hour nap the first time and then wired her the second time. She was awake until 2am!! On top of that she was VERY emotional. She didn't really know what she wanted and heaven forbid anyone told her no, she would just break down and sob. It was hard because I couldn't really make her happy... even the nurses and care partners tried with no success. She did however eat and drink just GREAT which is a huge blessing! This morning she seems to be a little better. She's still not really active, but she's not gagging like she was yesterday. I haven't seemed to tick her off yet either LOL. We shall see how the rest of the day goes. Frank's lip is starting to get better. He said the swelling is down but the sores are still open so he still can't come up here. He as a doctor appointment on Wednesday and if they clear him he can come then. My mom is going to bring the kids up either today or tomorrow. They can't all be in here at once of course so either I will go down to the food court with Kass and Kam while my mom stays with Kennedy and Keeghan or we may see if they can draw labs on Kenn and if her counts are high enough she may get to go to the family play room right outside the door of the wing. That would be awesome! It's up to the doctors though of course. Anyway, I guess that's about it. Pray that Kennedy has a good day. Yesterday was horrible for her... just broke my heart. Also, they started her on her medication for the nerve pain in her hands. It's called Lyrica. They said it will take a few days to know if it's working, so pray that it is and we can put an end to this pain for her! Don't forget to pray for Cody and his family too!!! I am thankful for drug companies who make anti-nausea and anti-pain medications. They're helping keep my daughter comfortable!
Keeghan's upper GI went well. They did not see any structural abnormalities during the test today and his stomach appeared to be emptying well. They did however see severe reflux. I called his ped and she is switching him from Zantac to Prevacid (or maybe Prilosec, I can't remember) and she said they can add Reglan too if need be. Hopefully though this new med will take care of it. He puked up all the barium they made him drink. That was oh so fun to clean up! LOL It was nice to see Kameron today. He and my mom came up to stay with Kennedy while I was gone with Keeghan. Then when I got back my mom ran to Target so I could spend time with Kam in the room. I got some cute pics of Kam and Kenn and Kam and Keeghan together. I'll post those as soon as Frank can come up here with his laptop. Kennedy's doctor decided to consult neurology about Kenn's hand pain. They came by to talk to me today (actually they talked to my mom first). They feel that it could be nerve pain that she's having and said there are tests they can run to be sure but they are very painful. The other option is to go ahead and start her on medicine for nerve pain. It has very little side effects and won't interfere with her chemo, so we decided to just try that. No point on putting her through painful tests needlessly. The docs said if that takes care of her pain we will know it is nerve pain. So we shall see! I think they are going to start it tomorrow. Anyway, I guess that's it! I'll update more when I have something to say! ;o) I am thankful that Kennedy's doctor is pushing to help the pain in her hands go away and I am thankful that Keeghan "just" has reflux and won't need surgery.
Hello all, Sorry for the delay in the update on Kennedy. I recevied a lot of information yesterday but was so overwhelmed that I just needed the time to get my head together. So here's what is going on now. First off, I love Kennedy's new doctor. She's a fellow, so there's someone above her, but she's going to be following Kenn for the most part. She spent over half an hour with me yesterday just answering my questions and getting to know Kennedy. While we are inpatient (I just realized that's only one letter off from impatient! hmmm) we have to see whichever doctor is up here for the week, but once we start following up in clinic we will see her. She told me that whenever I have any questions I can have her paged as well, which is what I did yesterday after the doctor I don't like came in AGAIN! She just confirmed my original feelings. I was so frustrated after she left that I had Anne paged and she promised only one more day with her and she would be off rotation. Thank GOD! I can feel my blood pressure rising again so I'm going to stop there. So let's see... Frank's cultures came back and he does have MRSA. I let Kennedy's nurses know and her doctor called infectious control to see what we need to do. Frank cannot come here until his sores are closed and completely healed. They said they would prefer he gets cleared by his doctor first as well. It would be HORRIBLE if any of the kids up here got MRSA and we are more than happy to keep him away! He did get to go home yesterday. They pulled the tube out of his lip (ouch) and sent him home with heavy duty antibiotics. He's going to stay away from Kass and Kam till he's better too... we don't need them sick either! Now on this end, if Kennedy gets any hint of a fever she will immediately be put on isolation. The nurses will have to wear gowns and gloves and masks when they come in and Kenn won't be allowed to leave her room. If that should happen I will need to call our pediatrician to see if it's ok to keep Keeghan here. If it's not ok then my mom and I will switch places until they make sure Kenn doesn't have MRSA. SO pray pray pray she doesn't get a fever!!!! Kennedy is feeling ok for now. She had a lot of pain in her hands yesterday, it got so bad she started crying so I finally asked for some medicine to help her. They gave her tylenol which worked just fine. She kept her spirits up most of the day but there were times she would just lay down on her pillow and look at me like "This sucks!" Yeah... pretty much! She has kept a good appetite so far and is drinking well. We've taken her off the miralax for now after she had a major blow out last night. Keep praying that she doesn't get sick and that she keeps eating!!! About Kennedy's chemo meds: Kennedy's new doctor (Dr. Prasad) said that Dr. Shankar presented Kennedy's case to the tumor board here at Vandy as well as contacting other children's hospitals and an expert in Down syndrome and Leukemia and they all agreed that it was too risky to do the Ara-C again. She said they didn't want to test Kennedy's limits and accidently push her too far where they can't fix it. I agree with that!!! They also said that should Kennedy ever relapse, they have the low dose of Ara-C to fall back on where they wouldn't have it if they use it now. So they are hoping the regimin she is on right now will get this cancer out of her system. She also said there is a 40-50 percent chance that Kennedy will need a bone marrow transplant in the future. Sometime next week the kids and Frank and I will all be tested to see if we are a match for Kennedy. We're still waiting on the report from Keeghan's cord blood as well. That won't tell us if he's a match though, it will just tell us that they got good cells from him... or something... so he'll have to be tested as well. I'll let you know as soon as we hear anything. Speaking of Keeghan, he has his upper GI at 1:15 today downstairs (how convenient!). They are going to be checking for reflux and prayerfully ruling out pyloric stenosis. The Zantac doesn't seem to be doing him a whole lot of good, so we'll see what they say... I'll update again when we hear about that as well. My mom and Kameron will be coming up to stay with Kennedy while I'm down with Keeghan. Kassidy is going to a friends house (with 7 year old triplet girls, how fun!!) so she'll be happy! I feel like I'm forgetting something, but I can't think of what that is! I guess I can always update again later if I remember. Don't forget to pray for Cody and his family!!! I am thankful that Keeghan is sleeping. He can't eat until after his test and he's going to be so hungry!!!
For the last 3 years our family has been introduced and submerged into a new world... I call it my "Down syndrome world". We have met new friends and we have shared happy moments and sad moments. We have gone through surgeries together and rejoiced over milestones. We have prayed for each other, supported each other, we have indeed become family. On April 16th we were inducted, albeit unwillingly, to another new world. This world I call my "Cancer world". This world is proving to be harder... scarier... sadder. It is this sadness that leads me to this entry. Our friend Cody Myers and his family received the saddest news today that any family here can get. Cody has a brain tumor and today they found out that it is rapidly growing. His doctor gave him days to months to live. His parents, Angela and Jamie, had to make the decision to take Cody home and help him live out his last days the best way possible. This is a decision no parent should ever have to make. My heart breaks for my new family. Please keep the Myers family in your prayers... Jamie, Angela, Cody and his 4 week old brother Ben need them more than ever right now. We are praying for a miracle and we are praying that if a miracle is not God's plan that Cody will enjoy his time at home, that he will bond with his baby brother, that they will find peace. We love you guys. Please visit Cody and let him know you are praying.www.carepages.comsite name: CodyMyers1 . Tell him Kennedy sent you. I don't really know what to be thankful for right now...
OK so here we sit at almost 5:00 and Kenn still hasn't started her chemo! Turns out there was a problem with her blood work yesterday. Surgery didn't draw the right stuff and then the doctor up here forgot to order her labs again this morning so they had to wait for those to come back. They were just checking her liver and kidney functions and stuff like that. It all came back fine thank goodness. I don't know if I've mentioned before, but Kennedy's oncologist is gone :o(. We knew she was leaving before we went home last time. I was pretty sad because I trusted her and felt like I could get my questions answered (even when I asked over and over! LOL). But she's on to bigger and better things and we wish her well. However, that left Kenn without a doctor which made me nervous. There is one doc here we've encountered which we DO NOT like. She's condescending and under-reactive and just doesn't relate well... with me anyway. I told them I absolutely don't want her for Kennedy's doctor and they assured me that wouldn't happen. SO guess who we're assigned to today? GRRR They said it's just for today though, so hopefully we'll meet Kennedy's real doctor tomorrow. THEN her nurse said she would be bringing in her chemo soon and I asked if she could just double check and make sure that the Ara-C is at a lower dose than last time and she said she is not getting Ara-C at all, she will only be getting the meds she got last round. SO I asked when that changed and she found one of the other doctors who was working with Dr. Shankar (the one who left) to get some answers. Turns out they have been talking to other oncologists from other hospitals and they all agreed that it's just too risky to try the Ara-C even at the lower dose. Thanks for letting ME know that! Of course my next question is what does this mean for Kennedy long term? They kept telling me last time that Ara-C was so important for her recovery. I agree that if it's risky, don't do it, but I need to know what happens now! I should get those answers tomorrow when her doctor is around. Anyway, at least we know the chemo meds she'll start on tonight (Daunorubicin, Thioguanine and Etopiside) won't cause any serious reactions like she had with the Ara-C. They are giving her her anti-nausea medication to hopefully keep her from throwing up and then she's on her antibiotics and stool softeners and miralax. Frank is still in the hospital, but his fever finally broke so they are hoping his white blood cell count will go back to normal soon so he can get out of there. The cultures still are not back to tell what type of Staph he has. They said he may get to go home on Friday if his blood work comes back clear. I guess that's it for now. Pray that Kenn doesn't get too sick and that she can keep her appetite up! I am thankful for doctors who consult with other doctors when they aren't sure what to do. Putting the patient's best interest first is so important... especially when that patient is MY daughter!
Well we are FINALLY in a room. We spent over 5 hours in recovery after Kennedy's surgery because they didn't have a room for us. I think we broke the record for longest recovery room stay! LOL We ended up back in the same room we were in last time, 6303, so it's really starting to feel like home! Kennedy's surgery went well, she is still knocked out from the anesthesia, but that's typical for her. They are not going to start her chemo until morning. They want to be able to keep a close eye on her in case she reacts to the Ara-C again. Frank is still at the Army hospital. He has a tube through his lip draining out the bottom of his chin. The swelling has not gone down much and his white blood cell count is still really high and he's still running a fever even with the IV antibiotics, so they told him he will be there at least for 2-3 more days. The cultures have not come back yet on what type of staph it is but they are thinking it is MRSA. Anyway, I need to run and get our room unpacked. I will update again when we have news! I am thankful we are in our old room and that Kennedy is sleeping comfortably for now.
We're off to the hospital soon. Frank called last night around 11 and said they stuck a tube through the top of his lip and out through the bottom of his chin to drain the infection out! Makes me shudder to think about it! He was waiting for pain meds so he could get some sleep. Keep him in your prayers that he is not in pain today. Keep Kenn in your prayers that her surgery goes well. She'll be having her line replaced and a spinal tap. She is NOT going to be happy that line is back in! I'll update tonight from our room and let you all know where we are and how she's doing. I am thankful... that Kennedy doesn't have this staph infection too! And I am thankful for good friends who are willing to help out with Kass and Kam when we need them.
can blow up in your face! We had it ALL worked out for tomorrow! Kass and Kam were going to go to my mom's tonight and Frank and Keeghan and Kennedy and I were going to leave at 5am to get to Vandy by 6 tomorrow for her surgery. However, Frank now has a raging staph infection on his chin/jaw/lip/cheek. It's HUGE and he's been in so much pain all day. He has a high fever and has not had anything to eat or drink. He went to our local ER this morning where they tried to drain it without success and said it would need to be surgically drained by an ENT, but theirs was busy. GRRR. They gave him 2 different antibiotics and a pain medication and told him to call his ENT at the Army base, which I did only to never get a call back. I finally called again and they told me he'd have to go to THAT ER because they don't take orders from other hospitals. GRRR again. SO for the last 4 hours Frank has been sitting at his second ER for the day. I can't get ahold of him so I have NO clue what's going on but he definitely cannot go to the myelosuppression unit with a staph infection tomorrow! SO after going over all our options we called a friend to take Kass and Kam (the same friend who took them when Keeghan was born) and my mom helped me get the car packed up and she is going to go with me in the morning. Hopefully we'll be able to get the car unloaded without killing ourselves! Pray for Frank that they are getting this thing drained, it's seriously huge, and pray that none of the rest of us get this infection, it's highly contagious. I'll update again when I can!
Update 9:45 PM I finally heard from Frank. They are going to make an incision under his chin to drain this thing. They have him on IV antibiotics and they are going to keep him overnight tonight and maybe tomorrow night too. They need to make sure the infection is under control. Please keep him in your prayers.
Hello! Sorry it has taken me so long to update. We have been busy spending our last few days together as a family before Kennedy, Keeghan and I head back to the hospital. Kennedy had a wonderful birthday. It was very low key... Kam had his pre-k graduation that morning, then we picked Kass up from school early and went back to my mom's where Kenn opened presents, we ate cake, and then got ready for Kameron's soccer/pool party that afternoon. Kennedy got a kick out of singing "Happy Birthday" to herself and we taught her to say "I'm THREE!" (The next morning however she insisted, "No three, I two!" LOL) She crashed around 6:30 and slept until 11:00 the next morning! It was a fun day for all of us! On Friday, Kassidy went and got her hair cut to donate to Locks of Love so they can make Kennedy a wig. Kassidy's been wanting to cut her hair forever so I told her once it was long enough to donate she could get it cut. Little did we know then that Kennedy would need it! SO we bit the bullet and took her to our hair dresser, Dianna. Kass was all excited about it until after it was over... she got into the car and burst into tears! It's quite a shock getting 10 inches cut off your hair! She's afraid the kids at school are going to tease her tomorrow. She looks SO cute with short hair, I'm sure they will all love it! We're all very proud of her!! Keeghan had his ultrasound on the 17th to check for pyloric stenosis, and it was inconclusive. They said he had too much gas to see if his stomach was emptying correctly or not. His ped is going to send us for an upper GI at Vandy to get a better look, keep praying it's just reflux!! He's still shooting milk out his nose, which is just miserable for him, but we're hoping the Zantac she put him on will kick in any day now! He had his 2 week well baby check on Friday and is finally back up to birth weight, 7 pounds even, and has grown 1/2 an inch. His jaundice is gone now, so that's a very good thing! Kennedy will go into her peds office tomorrow to get blood drawn and check her counts. If she doesn't need a transfusion, she goes into surgery at 7:30 Tuesday morning to get her Hickman line replaced and then she will start chemo later that day. They will be trying the Ara-C again... the medicine she had a reaction to last time, so please pray her little body will tolerate it better this time! We have enjoyed our time home so much, as I'm sure you've seen by all the pictures I keep posting. Now we're ready to get back in there and fight off this cancer. We're praying for Kenn to be in remission by the time this round is over! Please pray also that she doesn't get sick from the medication. She did so well last time, and I'm really hoping she can keep her spirits up and her food down! Please pray for Kennedy's little friend Cody... he is going in for scans on Tuesday to make sure his cancer has not returned. It's very nervewracking to wait for results like that! You can visit him atwww.carepages.comand put in CodyMyers1. Here are LOTS more pics to finish off our "vacation". Enjoy! I am thankful for our time at home and that Kennedy stayed fever free long enough to enjoy it! My little graduate! The birthday girl opening presents Answering a birthday phone call Happy Birthday to you... My little party boy My Birthday girl! Playing outside My beautiful Kassidy before her hair cut During... After... My adorable girls My handsome boys My babies...