OK so I'm having a baby tomorrow! Frank and I are supposed to be at the hospital between noon and 1:00 and then I will meet with peds and anesthesia and all the other people that need paperwork filled out. We got our cord blood kit on Saturday morning so it's all ready to go. I have baby K's outfit and the shirts I made for the other kids ready to go. My mom will be here to stay with Kennedy and a friend is keeping the kids and promised to bring them up to meet their brother after he gets here! I am excited and freaked out at the same time! LOL I am hoping we have internet access there and we can post updates and pics right away. Otherwise I'll post as soon as I can or have someone else post. Pray that the baby gets here safely with no medical complications and a safe, easy delivery for me!! OK onto Kennedy. She is still doing well overall. She had to have another red blood cell transfusion today and they said platelets are coming soon... her white count was down to 1.3 yesterday and back up to 2.4 today, but they said she could still hit 0 and they hope she does because that shows the chemo is doing its job. She snagged her hickman line a little today. It didn't come all the way out thank God, but they had to do a chest x-ray to make sure it was still in the right place inside. Fortunately it is, but man what a traumatic afternoon for her. She doesn't like anyone to even LOOK at it let alone touch it. Taking off her shirt is cause for a major meltdown right now. She was breaking my heart. She took a long nap after and now the night nurse needs to get a really good look at it so we have to put her through it all over again soon. She cried so hard earlier she is covered with petachia now . Anyway, that's about it here! I'll post when I can with new pictures of Baby boy K (and he'll have a name!!!) ;)
Kennedy continues to do well. It's been nice having her only hooked up to the saline instead of all the chemo. Her appetite is still good and she had a great time getting down on the floor (on a mat the hospital provided) to play for a bit. She had her red blood cell transfusion yesterday and all went well with that too. I have been going nuts today itching!!! I can't wait until Monday when they promise this will go away! We are getting ready for the arrival of baby K. Frank brought up the pack n play and glider for him and my mom washed clothes and we went and got diapers and a few other things. Tomorrow Frank will be staying with Kennedy and I will be going home for a baby shower. It will be good to go home just for a bit and it will be great to see Kass and Kam! I miss them! Monday I have to be in L&D between noon and 1:00 to be induced! I still can't believe I'm having a baby in 2 days... Crazy! Anyway, that's about it here.
Whew today has been crazy, I'm sorry I haven't gotten an update out until now. Kennedy's room has been a revolving door today and I was gone for a lot of it to meet the OBs here. Throw in some mommy hormones and a long nap to recover and the day is over! LOL OK so first Kennedy. Tonight is her last night of chemo for this round. Her white blood cell count is down to 2.3 which is very low, but what the want to happen. They said she'll be down to 0 here soon. Her appetite is back full force!!! She's been eating and drinking just fabulously! Her nurses were pretty impressed. :o) She still has a pretty nasty rash on her chest from that darn tape, but it's healing slowly and does NOT look infected, thank God! Her nurse tonight walked me through changing her dressing for the first time. I've been watching the nurses for the last few nights and asked if I could try tonight since I have to do it at home anyway. It was pretty nervewracking, but with practice I'll get it down! Anyway, now we are just waiting for Kennedy's blood counts to bottom out and then build back up. They'll let us know once she is ok to go home for a bit. They still haven't done her red blood cell transfusion, but promise it's coming soon. She has all the nurses and care partners around here totally under her spell LOL. They stop in to play with her or just see what silly thing she happens to be doing at the time. Yep, that's Kennedy! LOL Onto me: I met with the new OB today here at Vandy. She did more blood work and I had an ultrasound. The baby looks great! He was moving all over and breathing well and didn't seem to be under any stress or anything. The u/s tech estimates him to be between 6 1/2 and 7 1/2 pounds. We will find out for sure on MONDAY!!! My liver enzymes cames back even higher than they were before so she got me on my liver meds and wanted to induce on FRIDAY! I was like WOW. I said ok and then remembered that the cord blood kit is not here yet and this is a one time shot I just can't miss for Kennedy's sake! SO She is having me come in Saturday morning just to be monitored and then I go in Monday to be induced. I'm going to meet with Anesthesia and Peds before they start anything, so I'm kind of hoping he's born after midnight so I'll still have my May baby! Either way, I can't believe I'm having a baby in a few days!!!!! No freaking out here, nope, none at all! I have taken a few pics of Kenn while we've been here so I figured you all might want to see ;). How could you NOT love that face?! Yummmm Corn!!! So tonight Kennedy asked to color... so I gave her a paper and her crayons and Frank and I were watching American Idol... one of Kennedy's nurses came in and said "OH Kennedy what pretty art work!" I looked over and she decided the paper wasn't big enough and colored her sheets!!! LOL At home she would have been in SO much trouble, but here... I took a pic, of course! LOL Busy working... My weapon of mass destruction Oh darn, I got caught! Here is Kennedy's door... covered with e-cards that all her friends on Downsyn have sent!! It's such a neat program Vandy has set up, they write them online and someone prints them out and delivers them right to the room! Kennedy loves looking at them all before I take them away and hang them up! LOL Anyway, that's it for tonight. I'll update again tomorrow!!
You know that saying, "Sometimes you're the windshield, and sometimes you're the bug"? Well... I think Kennedy and I are bugs! LOL Kennedy is still doing ok, but the tape from her hickman line caused a horrible reaction on her skin so they had to remove it (the tape, not the line) this morning. She is still in good spirits though and she and Grandma played the whole afternoon and evening while I was gone. She even ate a little! She's drinking fine so I'm going to try pediasure tomorrow and see if we can keep her nutrition up. She did not have her red blood cell transfusion today, they decided to wait a day or so more. OK so onto me and little baby K. Last week I started getting this HORRIBLE itching on the palms of my hands and bottom of my feet. It was driving me nuts. I was literally up all night itching! I chalked it up to nerves until I talked to a friend and she asked if I've ever heard of ICP (Intrahepatic Cholestasis of Pregnancy). Of course I hadn't and she said it was pretty rare but I should probably go in and get checked out. SO I went in last Monday, they drew blood and again told me it was rare but better safe than sorry and told me the results would be back in a week... which is today. So 3 guesses what I have?! *sigh* So basically this is affecting my liver. My liver enzymes are through the roof and they are going to get me on meds to help control it. They said my liver would go back to normal as soon as the baby is out. Most importantly they are learning a high percentage of moms who have ICP end up having stillborn babies if they deliver naturally. SO it's VERY likely I will have a C-section which I've never had before. On top of that, I cannot have an epidural due to my spine being twisted and rotated so if I have a c-section they'll have to use general anesthesia. SO after hearing about Kennedy and telling me I won the bad luck lottery (lol) she called a high risk OB here at Vandy and told her my situation and I am going to meet with them tomorrow or Wednesday. So I'll definitely be delivering here. They said there's still a chance I can deliver vaginally, but it all depends on the baby and what the OBs feel comfortable with. I made a joke that this baby knew he was going to be my last so he was letting me experience everything I missed the first 3 times around and she laughed but said that I seriously CANNOT get pregnant again. She said it would most likely put me into liver failure and either kill me, the baby or both. I told her my husband is getting a vasectomy and she said that's a good idea but I need to get my tubes tied as well... it's THAT important I don't get pregnant. After she drilled it into my head a few more times I promised I would get my tubes tied as well. So our baby making days are officially over! Anyway, I'll know more tomorrow when they call and tell me when to come in. Just one more hurdle. We can jump it! On a good note I will get to meet my miracle baby VERY soon!! I'll post again tomorrow and let you know about Kameron's open house. He's such a crack up!
Good morning! Kennedy had another fabulous night with no side effects from the new medication, praise God! She is still sleeping now because we were up late last night, but I'm hoping she'll be interested in breakfast today. The nurses just came in and showed me a paper with her blood counts. Her white count is starting to drop and they say that it could be down to 0 by the time the chemo is over. I think we have 3 days left, I can't remember. Once that builds back up we will get to go home for a bit. Her red blood cell count is dropping faster, so they are going to do a transfusion today. Her platelets are actually the highest they've been since February, I'm assuming because of her transfusion she had on Friday. My mom will be here to stay with Kennedy at 1:30 so I can go to my OB appointment and then I'm going to pick up Kass and Kam. Frank is going to take Kass to soccer practice and I get to take Kam to his kindergarten open house! It will be so good to see them. I may not update as much today as I have been, but I'll definitely let you know when anything new happens.
Kenn should be starting the new drug around 9 PM... I'll be so relieved when they get it started and see she's still OK! She's had a great evening. Frank is here again and we put Kenn in a wagon and walked around the floor a few times. She loved saying hi to everyone. He brought her a new Groovy Girl too, so he's her favorite person right now! LOL AND she ate!! Mashed potatoes and of course, ice cream. No more contractions today, thank goodness. I'm anxious to see what my OB says tomorrow!
OK so Kennedy's doctor just came in again and said they cannot risk giving her the Ara-C again, even in a lower dose. SO later today she will start on a new drug called Etoposide. They said it's widely used and while not as effective for AML as Ara-C is, it should still do well. They said for the next 4 months she'll be on the Etoposide/Daunorubicin/Thioguanine regimen and then they'll have to talk about what to do after that. Her treatment will almost definitely be longer than the 6 months now. One step at a time I guess. She said the side effects of this new med are pretty much the same as the others except for a very rare side effect of respiratory problems. Which her reaction to the Ara-C was very rare too so they will be watching her closely. I'll let you know how it goes!
Kennedy had a really good night!! She slept all night and woke up happy this morning. I took a gamble and ordered her breakfast which she wants nothing to do with, even her oatmeal which is a favorite! So maybe the other meds are upsetting her tummy a bit. Still, she's talking to the TV and the nurses and her babies and no fevers all night. So it definitely was the Ara-C that had her so sedated yesterday. It's nice to have my happy girl back! It was killing me to see her so out of it. We may get to explore the floor a little later. I heard they have a playroom here for the kids. I'm just waiting for the doctor's ok. On a side note, I was having some pretty yucky contractions last night. They've stopped now but something is definitely happening! I have an OB appt tomorrow, my mom is going to come stay with Kenn. I am hoping she will check to see if I am dilated at all so I know what to expect. I told him he has to hang on at least until May 1st! More later, I'm sure!
Man what a difference! Kennedy finally is feeling ok again. She's playing with daddy right now and laughing. She even ate two cups of ice cream, though she didn't want any "real" food. She's started drinking a little now too, so that's good. They started her chemo without the Ara-C about an hour ago and so far so good... no shaking or anything. Her temp did go up again to almost 103 earlier but has come down with tylenol. So, here's praying for a peaceful night. She doesn't have the O2 sensor on tonight so I forsee no beeping! LOL
OK so after watching Kennedy for awhile, her doctor decided that they had to stop one of her chemo meds... Ara-C. They were mostly concerned about how high her fever was and the fact that she wasn't waking up. Unfortunately this is one of the best medicines to treat her type of Leukemia. Also, it was combined with one of her other chemo drugs... Daunorubicin. So they had to stop both. Tonight she will continue with the Daunorubicin and the oral chemo drug Thioguanine. They stopped her meds around 1:00 and she finally woke up about 20 minutes ago. She's a little whiney, but she's sitting up and taking interest in things. Her temp is down to 99.8. I have offered her a drink which she didn't want, but haven't offered her food yet. At least her temp is down. They have her on 2 different antibiotics. One is vancomycin (which I'm sure I spelled wrong) and I'm not sure of the other one. Her doctor is going to be coming back tonight to let us know what the new course of action is. While Ara-C is a great drug for fighting Leukemia, obviously Kennedy's body cannot handle it, so they'll have to try something else. As always, I'll let you know more as I know more.
Kennedy's not doing so well today. She did sleep well last night... and so did I except for the darn O2 alarm beeping every 1-10 minutes! Her sats stayed in the 87-92 range and every time it hit 91 it would beep! They had me wake her up at 10am to give her the oral part of the chemo and she was just miserable... she started shaking again and her lips turned blue again and she still has a fever. Fortunately her doctor was able to witness some of it this time and agreed it's not a seizure, but I just feel so bad for her. She is sleeping again now and has not really been coherent since the chemo started. Her doctor was mostly concerned that she hasn't had anything to eat or drink since early last evening. Anyway, the doctors said they'd be back later to check on her so I will update again then.
Update 12:30 PM: Her temp is up to 103.6 now... they are doing more blood cultures to make sure there's no infection anywhere. More later...
They decided to go ahead and do blood cultures so we'll know what those say in a couple days. They gave her tylenol for her fever and said they would check on her again soon. SO hopefully everything is fine! She is still sleeping so I'm off to catch some Zs! More tomorrow!
OK so about 10 minutes after they started chemo Kennedy started shaking really hard and her lips turned blue. She was looking right at me but when I tried to pick her up she was stiff as a board. She was just looking at me like "what the heck is going on?!" This lasted for about 2 minutes. When the nurse came in she was still a little shaky and slightly blue and her face was white as a sheet. Now she is sleeping but she has a fever 100.4 and her O2 is down in the low 90s. The nurse had the doctor come in and he checked her out and consulted with another doctor. They don't think it was a seizure or anything and the oncologist on call said that sometimes the older kids complain of feeling really weird and getting really cold right after the chemo starts, so maybe her body just freaked out from the meds... it sure scared me though!! They want to draw blood cultures due to her temp but they said they don't usually do that while the chemo is going so the docs are deciding what to do. In the meantime I am up on an adrenaline rush, grateful I have a computer right here and Kennedy is sleeping peacefully. I'll post again as I know more.
Hello from Vanderbilt! It's been a long day but Kennedy is in her room now (room 6303) and is watching Signing Time and playing with her babies. Her day has gone well. She had her platelet transfusion and echocardiogram (which they said looks good). Around 3:30 she went back for her spinal tap and port placement (which I have learned is called a Hickman line). We were pleasantly surprised when they told us the scheduled surgeon could not do her surgery and instead we got her surgeon who repaired her duodenal web! Kennedy has a special place in his heart and he does in ours. It really eased my nerves to know she would be in his care. Anyway, her spinal tap went well and they said we should know the results either tomorrow or Monday. Her hickman line placement went well too, though she is in quite a bit of pain from it right now. The doctor ordered her some pain medication so that should help. Respiratory is also here to give her some albuterol as she has some rattles in her chest. They will be starting chemo later tonight, and have already started her on an anti-nausea medication. I guess that's it, but these rooms come equipped with computers, so I should be able to update often! Thank you all for praying today!
Here we go... a new journey in our lives is about to begin. Pray for Kennedy whnever you think of her today! I will keep you all posted and let you know how her surgery went as soon as I can. We love you all!
Can you believe I got everything done today?? OK so I forgot a few things of Kass and Kam's to bring to my mom's but besides that, I think we're ready. I do still have to pack for Kennedy and me but I'm waiting for laundry to be done. Anyway, Vandy called today and moved Kennedy's surgery up from 8am to 3pm due to another emergency case. Then they called back and said that they need us to go to the oncology office at 10am because the blood work they drew yesterday showed that they can't operate until they do a blood platelet transfusion. So she will have that done as well as an echocardiogram to check on her heart. They said the chemo will put a strain on her heart and could possibly cause congestive heart failure so she has a lot of echos in her future. I will try to get on and post tomorrow after her surgery, but if I can't, someone will post an update!
Well... today was a long day full of information! Here is the plan for now: Friday morning we need to be at Vanderbilt to have Kennedy's port placed in her chest. They are also going to do a spinal tap because they need to know if there are abnormal cells in her spinal fluid. Regular chemo does not go into the spinal fluid, so if there are abnormal cells there they will get chemo there too. After her surgery, she will go to recovery and then be admitted directly to the oncology floor. She will start her first round of chemo Friday night. This will be an aggressive round of chemo for 6 months... she will get the chemo for 4 days, then when she is well enough to come home they will discharge her and then we will go back the next month to do it all over again. They said it could take 2-3 weeks for her to be well enough to come home after the chemo, so we could be in the hospital for three weeks, home for one week and then back in the hospital for three weeks again. Her doctor said to definitely plan to be in the hospital more than we are home for the next 6 months. She also said the side effects to the chemo are very unpleasant but they will have medication to help control the nausea and hopefully Kennedy will do well through it. The kids will be allowed to visit her IF they have had no fevers, infections, illnesses of any kind in the recent past. Keeping Kennedy infection free is going to be the most important thing. Once the baby gets here they said they would make accommodations so I can keep him with me! YAY! She wasn't sure if that meant I would stay in the parent sleep rooms with him at night or if he could stay in Kennedy's room with me. Either way, I am so grateful for this! After the 6 months of chemo we will discuss what is next, one step at a time for now! As always thank you for your prayers! We can feel them working already! I will update from the hospital as much as possible. I guess that's it for now!!
Well the doctors finally called. Kennedy for sure has the myelodysplastic syndrome borderlining on AML. The good news is kids with Ds have an 80% success rate. We go in tomorrow and get all the info for her treatment, but they did tell us today that the first step is putting in a permanent port in her chest and then she will start Chemo. Apparently she's going to be getting a pretty aggressive chemo treatment and said there are lots of unpleasant side effects. Anyway, I guess I'll know lots more tomorrow, but it sounds like Kennedy is in for a rough road for a bit. Thanks so much for all your support and prayers!! They are appreciated more than you know.
OK Vanderbilt just called and said that Kennedy has some abnormal cells in her bone marrow... there are not enough yet to say she has leukemia but they are calling it myelodysplastic syndrome which is kind of a pre-leukemia. Her immune system is greatly compromised. They are waiting on some further test results to decide on a course of action and will be calling me back tomorrow to let us know what to do. The good news is, if we hadn't caught this now it could have gotten really bad really fast, so it's a good thing we had this test done. Thank you so much for your continued prayers for Kennedy. I will keep you posted as I learn more.
Kennedy's biopsy went really well! They actually let us stay and watch! It was kind of nerve wracking watching them put the meds in her IV and watching her fall asleep like that, she just kept looking at me like "I don't know what the heck is going on here" and then boom, she was out! I ended up sitting down and not actually watching as they were doing the procedure... I was worried they would have to pick me up off the floor LOL. They had a bit of a hard time waking her up, which is not uncommon for her, but once she snapped out of it she was back to normal and doesn't seem to be in any pain. She was VERY mad about the band-aid where they did the IV, but once we got that off she was good to go. She's sound asleep right now, and I'm just VERY glad it's over!!! Now we just have to wait until they call on Monday... it's going to be a LONG weekend! Thanks again for your prayers!
OK so it's been almost a month again, sorry!! As usual life is busy busy busy! I am now 35 weeks pregnant! It's hard to believe in a matter of weeks I'll be holding my new baby boy! YAY! My gestational diabetes is well under control just with diet, praise God. I am having some horrible pain in my back lately that my OB thinks may be a kidney stone. There's not much they can do for it besides pain control so pray it passes quickly (and as painlessly as possible). We are getting ready for the baby around the house, we are going to set up his cradle this weekend and buy a new double stroller and install his car seat. The kids are so excited they can hardly stand it! (Well Kennedy doesn't know what's about to happen, but the other two can't wait! LOL) Frank had his tonsils out and his deviated septum repaired on March 26th. It was pretty painful, but he's doing much better now and started back to work yesterday. Hopefully now he'll stop snoring... the ENT said to give it a month or so for all the swelling to go down. Now onto Kennedy... she has been battling something for the last couple months... no one is really sure what is going on, but she went through about 2 weeks where she slept like 18-20 hours a day. They ran bloodwork and her counts were all messed up so they immediately thought the worst... with repeat bloodwork her counts slowly started coming back up (though they never completely recovered) and eventually she got back to normal sleep hours and they chalked it up to a weird virus. Then a couple weeks ago she started getting these pains in her hands. She will be playing with her toys and out of nowhere drop them and cry out "owwwieee!!!" I took her back to her ped and she ran more bloodwork only to find that her platelets had dropped even lower than before. When a repeat a few days later showed the same thing, she decided to send us to hematology at Vandy. We had that appointment yesterday where her counts were still low so on Friday morning she goes in for a bone marrow biopsy so they can rule out Leukemia (we pray!). We should know the results by Monday, but until then we'll be on pins and needles! Please keep her in your prayers that she does NOT have Leukemia AND that they can figure out what IS going on with her! I will update as soon as I hear from them, promise! Renee Little Miss Attitude on Easter Morning