Round Four Chemo

I'm so sorry it has taken me so long to update. Katelyn started chemo on Monday and is doing well. She is had high dose ara-c every 12 hours, starting Monday, and ended at 5:30 am this morning. She started mitoxantrone yesterday, and will receive it once a day for 4 days. Mitoxantrone is similar to the Daunorubacin that she had in the beginning. It can affect many aspects of the heart in both immediate and long term situations. She had an echo and an ekg prior to starting the mitoxantrone just to get a baseline. She will need both the echo and ekg before the next round as well. Because there are possible long term effects to the mitoxantrone, she will have an echo every year once we are finished to make sure her heart isn't affected. The mitoxantrone is a bright blue drug and it is common for kids urine to turn blue, tears, the whites of their eyes, etc. So far I haven't noticed anything strange, but it is kind of weird thinking my kid could be crying blue tears. She isn't eating nearly as much, but she's still drinking a lot. She is hooked up to fluids so we're not worried about dehydration. Her counts are still good, they don't usually drop until just after chemo is done. She'll be at zero right around the time I have the new baby. The doctor said that when her counts come back, if everything is smooth sailing, we may be able to take her home for a small stint before her fifth, and final round of chemo! We are so excited! I was really worried that she would be upset and angry about coming back to the hospital, but she has been incredible. She is totally okay, not asking to go on car rides, or to go home. She adjust so well to every situtation, I can't believe how amazing she is. I am so proud of her. I was really worried that she would hate being here, but she doesn't. She loves her nurses, and that makes this all so much better. Thankfully her ANC is up, so she is able to cruise around the halls and go to the play room. Once that all is taken away it might be a whole different story. In time, we will know.


We had such a wonderful time at home. She loved everything about it. She slept in her big girl bed at night, she loved car rides, and had an amazing appetite. It was a wonderful break from the hospital. We went to a small birthday party and a friend of ours took some adorable pictures of Katelyn, I will post a few so you all can see our little miracle child!


I had an ultrasound on Wednesday and the baby is already 8lbs! There's a nice size, healthy baby in my belly! We are very anxious and excited for the baby to be here. I feel like I'm going to pop and don't think I'll make it a week and a half! Who knows though. With Kate I thought I was going to pop for a few weeks before I did, so it may be the same way.

I think that's all for now. Thank you all for your continued support!

Love,
Krystal

Wow! What a whirlwind week. Everything has been wonderful. We were able to take Katelyn home with us a week ago today. We have been enjoying her so much, and she is having a fabulous time out and about in the real world. We went to Birch Aquarium on Monday. We didn't realize it was Presidents Day, otherwise we might not have went, it was really busy! Kate loved all the fishes though! Todd and I have just been enjoying having her home with us. It has been incredible! She is eating and drinking wonderfully and loves to play with all her toys. She is still obsessed with Ariel, and wants to watch it all the time. We don't put it on until bedtime though. We got her a new "big girl" bed and she loves it. She is sleeping through the night in her big girl bed and it is amazing! She used to just go down by herself, now she wants "Mommy's" to lay with her for a bit. I usually get up before she's asleep, but sometimes she wants me to stay longer. I don't mind, I love being with her! Her appetite is insane, she wants to eat all the time and I love it! She's not neutrapeonic right now, so she can pretty much have anything. She LOVES grapes, blueberries, eggs with spinach, and lots more. Her appetite wasn't this good at the hospital, but I know it is because she was sick of the food there. Now that we live so close and are settling in, we will cook more meals for her and eat together.

We went for her bone marrow aspiration yesterday, and we'll find out how everything looks on Monday. Her labs showed that everything was good. ANC, platelets and hemaglobin levels looked good. We are so thankful. The surgery last week went well. She came back from the anestesia wonderfully and is just amazing. Her line is flowing perfectly, and we don't anticipate any problems any time soon. During her bone marrow aspiration yesterday we also had her spinal chemo (ara-c) given. We don't want to put her under very often so it made sence to do it while she was already under. We check back in to the hospital on Monday to start round 4 chemo. It is a little different than the last round. When her counts recover we may be able to bring her home for a week or so again! It all depends on how she handles going back to the hospital this time. We don't want to traumatize her so we will play it by ear. She is so wonderful and we are so thankful for her!

I am feeling good. Tired and my body is uncomfortable all the time. It's uncomfortable to sit, lay, stand, move... everything I do is uncomfortable. The baby is still active as ever and healthy. I love to feel the baby move. It is really obvious and you can see my belly moving all the time. Todd feels it all the time, and Katelyn is aware of it too. She is adorable, when we ask her if she wants a brother or sister she always says "hold it, love it, hug it". She loves babies. I'm getting ready at the house. I bought some gender neutral clothes and stuff the other day, Todd cleaned the carseat, bags are getting packed. I still have a box in the garage with the boppy, diaper bag, nursing shawl, breast pump, etc. that I still need to go through and get together. For the most part I feel like we'll be okay though. I'm not too stressed out. I'm really happy at our new house, and love having my family together. It is amazing. I can't wait until we can all be home together permanently.

We don't have tv or internet at our place, so I haven't been able to update or check email. When we're back at the hospital next week, I'll update again and post some pics of our angel while she was "free"!

Love and thanks to all!

Love,
Krystal

Surgery on Wednesday

Last night we had quite the ordeal. Katelyn's hickman broke. Her hickman is the set of tubes that is in her chest. The lines are how she accessed for everything from blood draws to chemo. We have been fortunate that we have done so well with it until now. After Katelyn starts to recover from her chemo and her counts start to come up, her platelets always come up quickly. Once they get to about 250 her line gets sluggish. Todd & I as well as our regular nurses are aware of this and take special precautions to avoid it clotting. If she runs out of fluids she will clot off in 5 minutes, if she is running at less than 20mL she will clot. Todd and I stay pretty on top of it and make sure neither of those two things happen. Sometimes it will still happen and we have to TPA the line. That means that they put a drug in the line that is strong and will break up whatever is clotting and comprimising the line. Last night her small lumen wouldn't flush, so they switched lumens and the large one wouldn't flush. Todd used a flush and was very gently tapping on it to try and break it up a bit, the nurse we had took over and rather thank tapping on it, she gave it a push... and the line broke. Once the line breaks, it is exposed to everything, air and bacteria. The nurse didn't clamp it immediately and although we think the clot would have kept any bacteria from actually entering her system, it is still a major infection risk. They tried to repair it but were unable to adequately set the glue. As of today the line is leaking and unable to flush. There are a few options as far as caring for the line. One would be to attempt another repair. Our concern is that even if the repair is successful, the line is still comprimised and not at 100% strength. We have this clotting difficulty after every chemo, and with at least 2 more, we don't believe the line is strong enough to withstand her platelets and constant access. If it isn't stron enough then they will have to repair it multiple times. That means it will be accessed a lot, and the risk of infection is too high for us to be comfortable. The other option is to have the hickman surgically replaced. Todd and I believe that this is the best option. The line will be new and not comprimised. The scary part is putting Kate under and all the possible side effects. Everything went well with her first hickman, and the doctor who would be putting the new one in also did the first one. Todd and I are more comfortable with this option and have scheduled her surgery for Wednesday.

Another downside to doing the repair is that we would be paranoid about it all the time. We wouldn't want to leave Kate with any sort of sitter for any period of time because of the high possibility that the line be comprimised even more. With baby number two coming, we need Kate and ourselves to have a bit more freedom to have help.

I am very thankful that we got our place right down the road. Miraculously I woke up to my phone vibrating on the dresser at 2:58am and was at the hospital by 3:06am. This is exactly the reason we want to be close to the hospital during this time. Anything can happen, at any time, and both Todd and I feel much more comfortable being easily accessible. If I had been in Ramona, I wouldn't have been here to help make decisions or comfort my child while her health is being jeopordized. I am VERY thankful to be right down the road.

Please pray for Katelyn. Please pray that she stay infection and fever free and that her line stay clear while we wait until Wednesday. Alsp pray that her surgery go well, with no complications.

Thank You for your support!

Love,
Krystal

And, she sleeps...

Katelyn is finally taking a nap! Yesterday we had quite the dramafest during both naptime and bedtime. I had a doctors appointment during her usual nap time and desperately tried to put her down for a nap. She wouldn't have it. She cried for 45 minutes before I left. The nurse who watched her while I was gone said she just played in her crib the whole time. She didn't take a nap all day. It was tough. Todd and I tried to get her down at 8:30 last night. I was sure she would sleep soundly due to the lack of sleep during the day; boy, was I wrong. Todd left and she screamed "Mommy" for nearly 45 minutes. I tried everything... singing to her, rocking her, ignoring her... etc. I even brought her to bed with me & she wanted to play, so I put her in her crib again. Eventually, she ended up in bed with me, and after multiple warnings that she had to go to sleep or she would go in her crip, she finally went to sleep. I think she has a lack of stimulation at this point. She can't go in the halls, outside, or to the playroom. She has been stranded in our room and looks to be that way for about another week. I need to interchange some toys and bring in something new for her to do, as she can only stack blocks, color, and play with Mr Potato Head so many times (those are her favorites). I need to find more ways to occupy her and stimulate her. Any ideas would be greatly appreciated.

We are hoping that her counts will start to come up in the next week or so. The last round only took about 15 days for her ANC to rise, and we're nearing 15 days. I hope that it starts to come up a bit soon. Todd and I hope that if it comes up high enough and we are settled enough in our place we might bring her home for a few days. I know she'll love home cooked meals and familiar surroundings! It will be amazing to have our little family home again. I do worry that it will make it more difficult for her to come back to the hospital. Some of the nurses think that she will do just fine coming back. I don't know what to expect, I guess we will just have to wait and see.

Todd went up to Kaplan yesterday. After numerous phone calls and getting the roundabout numerous times, he finally just went up there to get things done. He was able to contace the right person and they are sending his certificate of completion in the mail this week! Yay! He also signed up for an NCLEX refresher course, I believe it is next week. He has a lot of studying to do before hand. I am so proud of him and so excited to finally see these steps being taken. He'll take the refresher course, mail in his certificate & finger prints and be able to take the test! Once he passes (which I believe he will, but prayers are always welcome :), he is a Licenced Vocational Nurse & can start working in the medical field! Yay! I'm sure as soon as he's working, he will get back into school to step up as an RN. He'll have more opportunities and much better pay as an RN. He's anxious and I am excited!

Little Miss Katelyn just woke up! Love to ALL!