Katelyn started chemo on Monday night. It is high dose Ara-C. It runs through her IV over three hours. The schedule is different that I originally thought... She received 4 rounds of the Ara-C (every 12 hours), and after the 4th round she received a "Peg in the leg". The Peg is actually L-Asparaginase, and is a nasty shot injected in her leg. There are different forms of the Peg & fortunately the Peg she had is one of the less crazy. The shot Kate got is still scary because there is a 1/10 chance of her getting an allergic reaction. Fortunately, we are going on hour two with no signs of a reaction. We will have to continually monitor her throughout the day to make sure. There are other forms of the Peg that are time released. We have a friend who received a time released Peg, she had an allergic reaction, and about every 6 hours she broke out in horrible hives. Once the shot is given there is no stopping it, so you just have to treat the symptoms. So far so good, but prayers are appreciated. She has a 5 day break and will recieve the same 4 doses of high dose Ara-C, and another Peg.
This round of chemo has been tough on Kate. Fortunately, the around the clock anti-nausea meds we have her on are working pretty well for her. She hasn't been sick and can stomach some food. She's a big fan of oatmeal these days! The Ara-C causes flu like symptoms and Kate is definitely feeling it. She's spending a lot of time lounging and sleeping. I hope the after effects aren't as rough as the current effects!
We found out the results of Kiera's cord blood and unfortunately it is not a match for Katelyn. We still have a few 6/6 cord matches set aside for Kate and we will not release them. We hoped that they were a match, but we have faith that Kate will not relapse.
Thank you for your continued prayers!
Love & Thanks,
Krystal
Wednesday, April 8, 2009
Monday, April 6, 2009
We're Back!
After two wonderful weeks at home, we checked back into the hospital today. We had a wonderful time at home. We were out and about a lot, but tried to stay low key. We did take a few fun day trips. We went to the beach and saw Sea Lions, and Kate loved all the Sea Gull's flying around. We also had lunch in Mission Beach and walked the boradwalk. Kate had a few playdates and was finally able to play with kids and have a good time. All in all, we had a great time at home!
We've been telling Kate that we were coming to the hospital and we're going to get a room and see the Nurses. Once again, she was 100% okay with it and was excited to see the nurses. She said "bye bye" to the house this morning, and we were on our way. We've checked in, and are getting settled. Kate & Kiera are both asleep in the crib, it is so peaceful! We hope to get a bigger room soon, and one that is a little more private. This one is nice because it has a private bathroom! I hope our next room has a private bathroom too! Unfortunately Kate has c-diff again. This is the fifth time! She's on lockdown in the room until she has three negative stool samples. It is a rough way to start this stay, but we will manage. Lets pray for negative stool so she isn't confined!
We start chemo tomorrow. She is getting two types... One of them is a leg shot ( I can't remember the name right now) and the other is high dose Ara-C. She's had Ara-C during every round, but this dose is much stronger than the previous doses. Before each of the other rounds Kate also had Ara-C injected into her spinal fluid, but this round of Ara-C is so strong that they don't even do that. The Ara-C is so strong that it will make it's way into her spinal fluid. I hope the anti-nausea meds work for her this time around.
We expect to be here for another 6-8 weeks while Kate recovers from this round of chemo. We then pray that all will be clear and we never have to put our little Angel through this again.
Her Second Birthday is July 8th.... expect a big Birthday/ End of Treatment Party!
Love & Thanks to All!
Love,
Krystal
We've been telling Kate that we were coming to the hospital and we're going to get a room and see the Nurses. Once again, she was 100% okay with it and was excited to see the nurses. She said "bye bye" to the house this morning, and we were on our way. We've checked in, and are getting settled. Kate & Kiera are both asleep in the crib, it is so peaceful! We hope to get a bigger room soon, and one that is a little more private. This one is nice because it has a private bathroom! I hope our next room has a private bathroom too! Unfortunately Kate has c-diff again. This is the fifth time! She's on lockdown in the room until she has three negative stool samples. It is a rough way to start this stay, but we will manage. Lets pray for negative stool so she isn't confined!
We start chemo tomorrow. She is getting two types... One of them is a leg shot ( I can't remember the name right now) and the other is high dose Ara-C. She's had Ara-C during every round, but this dose is much stronger than the previous doses. Before each of the other rounds Kate also had Ara-C injected into her spinal fluid, but this round of Ara-C is so strong that they don't even do that. The Ara-C is so strong that it will make it's way into her spinal fluid. I hope the anti-nausea meds work for her this time around.
We expect to be here for another 6-8 weeks while Kate recovers from this round of chemo. We then pray that all will be clear and we never have to put our little Angel through this again.
Her Second Birthday is July 8th.... expect a big Birthday/ End of Treatment Party!
Love & Thanks to All!
Love,
Krystal
Saturday, March 28, 2009
Home, at last!
We were able to bring Katelyn home on Tuesday! We have thoroughly been enjoying our time at home with our little family. It's wonderful having all 4 of us together, outside of the hospital. Katelyn is absolutely loving it! She is obsessed with car rides, shopping, stairs, and being outside in general. She is having a wonderful time. We all are. She had a doctors appointment yesterday to have labs drawn and have her stitches removed. Unfortunately her ANC is still under 500, which means she is still very immune comprimised, so we have to continue to be extra careful. I am very thankful that we still have a week at home. It has been so wonderful, I can't imagine going back just yet. Only one more round and we are finished! We hope that by June she will have her hickman taken out, and we can get back to living life! Her birthday is July 8th, so be ready for a big celebration! Before the age of 2, Kate has already proven to be the strongest person I've ever known, and I am so proud of her!
Love to all! I'll update again when we're back at the hospital. I don't have internet at home.
Love,
Krystal
Love to all! I'll update again when we're back at the hospital. I don't have internet at home.
Love,
Krystal
Sunday, March 22, 2009
Photos of Kate & Kiera!
Kiera Elizabeth Devermann
Our Sleeping Angels
I just met you but I already love you!
Kate & Kiera meet for the first time.
Our New Addition!No News is Good News... For the most part.
Since Katelyn's fevers and rash we have had an array of consultations and visits from Dermatology Specialists, Infectious Disease Specialists, as well as our array of Oncology Doctors. We still haven't heard anything on the Echo, but the skin biopsy came back negative for any sort of abnormalities. The doctor's cut a small, pen tip sized hole from her left arm to test one of the bumps she had. Unfortunately the CT scan showed two abnormal nodules on her left lung. One of them is 2mm and the other is 4mm. We hope that the two nodules resolve themselves or are treated by the antibiotics. Much to our dismay, as we were very hesitant to do the first CT, we will have to re-do the CT in 2-3 weeks to see if the nodules are still there. If they are still present we will have to talk about what to do. They are not normal, and not supposed to be there, so we will have to consult doctors as to whether or not they need to go in and get them. Unfortunately they are not on the edge of her lung, they are right in the middle. If we do need to go in and get them to see what they are, it will be a very serious surgery. We hope, an pray that those two little blemishes dissapear and are never seen again. So far, with the lack of abnormalities in her tests, the doctors are calling it either a fever of an unknown origin, or some sort of virus. It was a really tough week and a half for us. I am very thankful that she no longer has fevers or bumps. Thank you for all the prayers!
Kate and Kiera are incredible. Katelyn is such a doting, loving big sister. The second I walk into her room in the morning she is all smiles calling for Kiera. She just loves her. She gives her kisses galore and wants to see what she's doing all the time. It is adorable. Kiera eats, sleeps, poops & pees. That's about it. She makes the funniest faces... she makes me smile a lot. Todd has spent the last 2 weeks sleeping at the hospital with Kate, and Kiera & I have been going home & cuddling up in our mega bed. I can't wait for Todd & Kate to come cuddle up with us at home. Thankfully, Kiera sleeps incredibly well at night. I'm sure it's because she sleeps right next to me all night. During the day she wants to nurse all the time, and then she wants me to hold her. It's wonderful bonding time, but it is difficult because I want to spend time with Kate too. I'm sure we'll find some sort of routine and make it work sooner than later. Katelyn is getting so big. She is growing and changing and learing. She is incredible. She's putting 2 and 3 word sentences together and it's incredible. It's also a little disturbing! I was leaving the hospital the other day and asked her for a kiss and she said "No Kisses!". Of course I was suprised, and I really dislike the "N" word, but it is still amazing seeing her put those things together. She is incredibly smart and we couldn't be more amazed & inspired by her.
Thank You to everyone for your continued prayers and support. We couldn't be more grateful. Thank You!
Love,
Krystal
Kate and Kiera are incredible. Katelyn is such a doting, loving big sister. The second I walk into her room in the morning she is all smiles calling for Kiera. She just loves her. She gives her kisses galore and wants to see what she's doing all the time. It is adorable. Kiera eats, sleeps, poops & pees. That's about it. She makes the funniest faces... she makes me smile a lot. Todd has spent the last 2 weeks sleeping at the hospital with Kate, and Kiera & I have been going home & cuddling up in our mega bed. I can't wait for Todd & Kate to come cuddle up with us at home. Thankfully, Kiera sleeps incredibly well at night. I'm sure it's because she sleeps right next to me all night. During the day she wants to nurse all the time, and then she wants me to hold her. It's wonderful bonding time, but it is difficult because I want to spend time with Kate too. I'm sure we'll find some sort of routine and make it work sooner than later. Katelyn is getting so big. She is growing and changing and learing. She is incredible. She's putting 2 and 3 word sentences together and it's incredible. It's also a little disturbing! I was leaving the hospital the other day and asked her for a kiss and she said "No Kisses!". Of course I was suprised, and I really dislike the "N" word, but it is still amazing seeing her put those things together. She is incredibly smart and we couldn't be more amazed & inspired by her.
Thank You to everyone for your continued prayers and support. We couldn't be more grateful. Thank You!
Love,
Krystal
Tuesday, March 17, 2009
No News
Kate did well during the procedures yesterday. The hard part was her being unable to eat all day. Poor girl was starving. It is hearbreaking when your child is hungry and you can't give them anything to eat or drink. She kept telling us she was hungry and she wanted food, always accompanied with a "please" and tears. It is heartbreaking. She came out of the anestesia well and had dinner waiting for her in the room. During her procedures we were very upset with how we were treated by her treating anestesiologist. Our doctors told us that one of us would be able to be present for the procedures, including the CT. The anestesiologist didn't want to talk to us about risks or give us her opinion on the procedure, she was very rude to us. Once Katelyn was asleep she kicked both of us out, although we were told that Todd could stand behind the glass and watch after her. At that point we were frusterated. Once Kate was rolled out of the room we went to the PACU, where the Echo and skin biopsy were to be performed... the anestesiologist, again with a rude demeanor, told Todd her couldn't go in the room. Every persone we spoke with prior to the procedures told us we would be present during the procedures. That was part of the reason we agreed to do them. As soon as the anestesiologist closed the door behind her, we went looking for someone to complain to. The way we were treated was ridiculous & unprofessional & our caregivers should have been better informed on policy and not made promises that they couldn't keep. Although we were confident that everything would go well, we had anticipated Todd being able to be present to support Katelyn. It was a rough afternoon. Thankfully, Kate did well and they got all the tests they needed.
Now we wait for results. When, we don't know. Usually one thing will come back at a time. As soon as we have some more info I will update again.
On a positive note, prayers are working! It has been over 24 hours since Kate's last fever! Yay! We are so thankful that she is feeling better and hope that she will soon be back to the halls and will be able to be out and about!
She is such a strong and incredible child. I am so thankful for everything about her. She has this way of brightening up a room, and anyone who comes in contact with her feels her energy and can't help but be happy. She is coming into the terrible two's though. I know the fevers, hospital, lack of decent food, and lack of stimulation aren't making it any easier. I don't blame her for being upset and fed up. I think we're all getting there. We just can't wait to get out of here. It will be such a blessing to get back to life. I want a vacation. I think both Todd and I are due for some R&R with our little family. Maybe we'll try and take a trip this summer to relax and celebrate our little family.
Thank you for your thoughts, prayers & support. Please continue to pray for our little Kate.
Love,
Krystal
Now we wait for results. When, we don't know. Usually one thing will come back at a time. As soon as we have some more info I will update again.
On a positive note, prayers are working! It has been over 24 hours since Kate's last fever! Yay! We are so thankful that she is feeling better and hope that she will soon be back to the halls and will be able to be out and about!
She is such a strong and incredible child. I am so thankful for everything about her. She has this way of brightening up a room, and anyone who comes in contact with her feels her energy and can't help but be happy. She is coming into the terrible two's though. I know the fevers, hospital, lack of decent food, and lack of stimulation aren't making it any easier. I don't blame her for being upset and fed up. I think we're all getting there. We just can't wait to get out of here. It will be such a blessing to get back to life. I want a vacation. I think both Todd and I are due for some R&R with our little family. Maybe we'll try and take a trip this summer to relax and celebrate our little family.
Thank you for your thoughts, prayers & support. Please continue to pray for our little Kate.
Love,
Krystal
Monday, March 16, 2009
A Big Day for Kate
Today is a big day for Kate. Despite the intense amount of prayers coming her way, she hasn't been able to beat the fevers. Although they are less frequent, they are sill coming with a vengeance. She will play for hours and be happy and have a great day, then when she settles down and is ready to rest her body decides to attack whatever it is that's making her sick and she gets a high fever. We hoped to have some results from both stool & a nasal test by today, but the tests aren't ready and Kate is getting more bumps on her body. The doctors think that doing a CT, a second Echo and a skin biopsy (Todd keeps calling it a hole punch), is our best chance of finding out what is wrong. Todd and I are very leary about doing the CT, as there are many side effects, and Katelyn is allergic to one of the dye's that they inject. She can get pre-medicated for the dye, but it just makes us uncomfortable. Her ANC is starting to rise, which is wonderful. We wonder if, as her ANC comes up, her body may be able to help fight whatever it is that is making her sick. It is so hard to make these decisions. We are uncomfortable doing the CT, but if we wait to see what her body can do to help we risk whatever it is getting worse. All we can do is pray at this point that Kate have strength, andd that the doctors have expertise and skill and that these tests run smoothly and are effective in finding the culprit making Kate sick. Please keep praying for our little Kate.
Kiera is great, she is such a wonderful little baby. She is very easy. Todd and I are very lucky to have such even tempered, happy children. Kiera eats, sleeps and just hangs out. She hardly cries and is just a joy to each of us. We had a Doc. appointment this afternoon and Kiera is doing wonderfully. She has gained 6oz in the last 3 days (which is twice what the Doc had hoped), her jonice is going away, and she looks wonderful. We couldn't be happier with her. Kate adores her. Every morning, when Kiera and I get to the hospital, Kate gets a giant smile on her face and says "kiwa!" She wants to hold her first thing, and just loves her to pieces. SHe is a proud big sister. I'm not sure she likes sharing the nurses attention, but she is adjusting. Todd and I are so proud of our little ones. Kate is so strong, and incredible. We couldn't be more proud of her.
Thanks to all for the congratulations and prayers. We can certainly use the prayers. I'll update soon & hope to upload pics from my camera so you all can see our little angels!
Love,
Krystal
Kiera is great, she is such a wonderful little baby. She is very easy. Todd and I are very lucky to have such even tempered, happy children. Kiera eats, sleeps and just hangs out. She hardly cries and is just a joy to each of us. We had a Doc. appointment this afternoon and Kiera is doing wonderfully. She has gained 6oz in the last 3 days (which is twice what the Doc had hoped), her jonice is going away, and she looks wonderful. We couldn't be happier with her. Kate adores her. Every morning, when Kiera and I get to the hospital, Kate gets a giant smile on her face and says "kiwa!" She wants to hold her first thing, and just loves her to pieces. SHe is a proud big sister. I'm not sure she likes sharing the nurses attention, but she is adjusting. Todd and I are so proud of our little ones. Kate is so strong, and incredible. We couldn't be more proud of her.
Thanks to all for the congratulations and prayers. We can certainly use the prayers. I'll update soon & hope to upload pics from my camera so you all can see our little angels!
Love,
Krystal
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