I've been laying in bed for hours trying to clear my head so I can sleep. I can't do it, I can't stop thinking, and therefore, I can't go to sleep. Maybe after I update everyone I will be able to get a few hours before Katelyn wakes up. Here goes!
Todd and I signed a lease on a condo this afternoon! I am incredibly happy and anxious to get in there! I finally feel good about having a place to call "home". That has been really difficult for me. I have felt sad and guilty about not having a consistent, homey, home to bring Katelyn and our new baby to, when all is said and done. I have especially felt guilty about not having a place for Kate and her things. I feel much better now that she will have a home. Todd and I are both really happy about it! We are moving in this weekend... well, Todd will be moving us in this weekend. It will be a long unpacking process, I'm sure, but it will be incredibly worth it. On top of wanting a place for Katelyn to be comfortable, I want my stuff. I want to sleep in my amazing bed, and walk in to my comfortable couch! I can't wait to eat good, healthy, homemade food, and take a shower in my own shower! I am so excited about having a place to call home. Even more so, I am excited about nesting with my children and husband. It is something that we haven't truly been able to do since we have been married. It's incredible that it will just be us. I cannot wait!!!
Our place is only about 5 minutes from Childrens! It's so close that I will definitely be walking the kids up to Kate's clinic appointments. It is a 2 bedroom, 1.5 bathroom condo with a 1 car garage. Here are a few things that sold Todd and I; The carpet is brand new (which was a must), new lanolium in the kitchen and bathrooms, new paint, new toilets, and the tub was newly resurfaced. It is also one of few condo's that is at the end of a culd-a-sac and opens up to a large grass courtyard that the kids can play in. The other condo's we're closer to the street, and that was scary for us. The master bedroom is big enough to fit our bedroom set (yay!), and we will manage to fit furniture for two little one's in the second bedroom. The living room is also large and will fit our couch plus some with no problem! We will have to get a small table, as there isn't much room to fit one, but I definitely like to sit down to meals as a family. The garage is tiny, but it will work perfect for storage. I don't want clutter. I am sick of clutter. We will definitely be weeding out the little things that don't matter and take up space. The condo will be perfect for our little family, but we have to be selective as to what we bring in, as too much will crowd us out. I am very excited about having a home! I didn't realize how stressed out I was because of that lack of stability. I already feel a huge sence of relief!
Katelyn is incredible! She is still a little fireball. Her ANC is zero, which is what we want. Now it's just a waiting game for it to come back up! She was unhooked from her fluids today as she is eating and drinking well and doesn't need the extra hydration at the moment. She had a blood transfusion a few days ago and will need a platelat transfusion tomorrow. She took a couple spills today, and has the evidence popping out on her head, eye and chin. My poor baby. Hopefully the platelat transfusion will help her bruises to heal faster so she isn't all banged up. I still can't believe how well she is doing, and how incredibly well she is handling this. She hasn't been outside in about 12 weeks. I would be freaking out. I am so proud of her. She is also talking up a storm. I can't even keep track of her new words because there are multiple words every day! She understands us so well, and can remember what we tell her. She calls us out already! If she wants to walk and I tell her we can walk after a bath or a diaper change, or whatever, she will patiently do those things and then tell me "walk". She puts it all together and has the patience to wait until it is her turn. It is incredible. Of course, she has her fits and they can be dramatic but overall she is easy... and amazing. I couldn't be more thankful that she is my daughter and that I have the honor to be her mother.
Okay.... I'd love to get some sleep, so I'll try again! Love to everyone! Good Night!
Wednesday, January 28, 2009
Monday, January 26, 2009
Thank You & I'm Sorry!
Thank You to everyone who participated in the Dinner & Auction on Saturday night! Todd & I had a wonderful time and are incredibly grateful. It took A LOT of work and man power to get it all together and organized. Thank You so much to Jenna and the rest of her incredible crew! You all did an amazing job, Todd, Katelyn & I are so thankful! Thank You to everyone who came to support us! We hope you enjoyed yourself and enjoyed the dinner and mass array of items that were donated! Todd and I were in awe over the amount of items there were! It was incredible! From the bottom of our hearts, we wanted to thank you all!
I'd also like to send out an apology to our nursing staff. Back in October I posted something out of frusteration and mentioned a name, and even altared it in a demeaning manner. I am truly sorry. First of all, I shouldn't have mentioned any names, and secondly, I definitely shouldn't have used it in a mean manner. This post was at the beginning of our current 14 week stay at Childrens, before I was ready to be here and before I understood the way things work around here. Todd, Katelyn and I love all of the nurses here (icluding the one mentioned!) and had I the understanding and experience then, 6 days in, that I have now, I never would have written anything of the sort. I am really sorry to anyone and everyone that may have been offended or insulted by that post. I really feel bad about it. Had I remembered it was there I would have deleted it a long time ago. I hope those of you who noticed that post also noticed that in my 14 weeks of blogging, that is the first and only negative thing I have ever written about the staff and our stay here. Again, I am truly sorry & couldn't be happier with the care and attention that our daughter has gotten here.
I'd also like to send out an apology to our nursing staff. Back in October I posted something out of frusteration and mentioned a name, and even altared it in a demeaning manner. I am truly sorry. First of all, I shouldn't have mentioned any names, and secondly, I definitely shouldn't have used it in a mean manner. This post was at the beginning of our current 14 week stay at Childrens, before I was ready to be here and before I understood the way things work around here. Todd, Katelyn and I love all of the nurses here (icluding the one mentioned!) and had I the understanding and experience then, 6 days in, that I have now, I never would have written anything of the sort. I am really sorry to anyone and everyone that may have been offended or insulted by that post. I really feel bad about it. Had I remembered it was there I would have deleted it a long time ago. I hope those of you who noticed that post also noticed that in my 14 weeks of blogging, that is the first and only negative thing I have ever written about the staff and our stay here. Again, I am truly sorry & couldn't be happier with the care and attention that our daughter has gotten here.
Monday, January 19, 2009
Ending Round 3
Thanks to all the prayers Katelyn's fever didn't spike at 101! We were very glad when her body fought off the fever. If it had spiked we would have had to do blood cultures and start her on antibiotics, which she would have had to stay on until her ANC recovers from this round of chemo. It would have been a pain, and Todd and I want her on the least amount of drugs possible. As I mentioned in a previous post, there are more side effects to this chemo; thankfully the only abnormal side effects Katelyn is experiencing is nausea (which is a bummer) and for a few hours after the chemo she gets a small rash on her head. It's not really a rash, her skin gets red and blotchy. It resolves itself within a few hours so we haven't had to give her anything for it or worry too much about it. The nausea is a bummer though. She can only have three doses of her anti-nausea a day, and it's spread just a bit too far. If she could have four, I think it would be perfect. We added another anti-nausea med at night to help with the time lapse, and it is combined with benadryl. Needless to say, Kate has slept a little better the last few nights.
She only has three more doses of chemo in this round. Today at 4pm and 5pm, and then tomorrow at 4am. The 4 O'Clock chemo kicks her butt. It is called Ara-C (well, that is the acronymn for the real name). Since the drug is so strong it comes out in all bodily fluids. With the first two rounds of chemo we didn't have to worry about tears and saliva. I wasn't allowed to change diapers as the chemo does come out in urine and feces. This round is so much more potent that I can't even have her sneeze or cry one me. Although we don't share utencils or drinks anyway, I especially can't eat or drink after her. The doctor said that the intensity of the chemo that Kate is getting is stronger than they can give any adult. Kids bodies are so much stronger than ours. I do my best to stay away from the bodily fluids, mostly for the sake of baby number two. Katelyn has to have eye drops four times a day during this chemo. As I mentioned it comes out in bodily fluids, it also can affect her eyes and cause conjunctivitis. The drops prevent that from happening. They don't hurt and she always says she's ready for them, but she cries because it's scary. I think she thinks we are going to poke her in the eye. She has been a champ through it, as soon as we're done she sits up and says she's ok and it doesn't hurt. She is incredible. A lot of the time Todd or I put visine in before we do hers just so she can see that we do drops too. Katelyn is amazing, and I feel incredibly blessed to have her as my daughter.
Just to remind you all, the Dinner & Auction is this Saturday! If Kate is feeling well enough Todd and I will both be in attendance. I hope she is, as I think it will be fun.
Julian High School
Live & Silent Auction with Dinner
5:00 PM
$20 Donation
I hope to see all of you there!!!
She only has three more doses of chemo in this round. Today at 4pm and 5pm, and then tomorrow at 4am. The 4 O'Clock chemo kicks her butt. It is called Ara-C (well, that is the acronymn for the real name). Since the drug is so strong it comes out in all bodily fluids. With the first two rounds of chemo we didn't have to worry about tears and saliva. I wasn't allowed to change diapers as the chemo does come out in urine and feces. This round is so much more potent that I can't even have her sneeze or cry one me. Although we don't share utencils or drinks anyway, I especially can't eat or drink after her. The doctor said that the intensity of the chemo that Kate is getting is stronger than they can give any adult. Kids bodies are so much stronger than ours. I do my best to stay away from the bodily fluids, mostly for the sake of baby number two. Katelyn has to have eye drops four times a day during this chemo. As I mentioned it comes out in bodily fluids, it also can affect her eyes and cause conjunctivitis. The drops prevent that from happening. They don't hurt and she always says she's ready for them, but she cries because it's scary. I think she thinks we are going to poke her in the eye. She has been a champ through it, as soon as we're done she sits up and says she's ok and it doesn't hurt. She is incredible. A lot of the time Todd or I put visine in before we do hers just so she can see that we do drops too. Katelyn is amazing, and I feel incredibly blessed to have her as my daughter.
Just to remind you all, the Dinner & Auction is this Saturday! If Kate is feeling well enough Todd and I will both be in attendance. I hope she is, as I think it will be fun.
Julian High School
Live & Silent Auction with Dinner
5:00 PM
$20 Donation
I hope to see all of you there!!!
Saturday, January 17, 2009
Fever, Go Away!
I am so sick of fevers! On top of the fact that they make Kate feel badly beyond the normal stress of chemo and drugs and iv's and everything else; they also make it impossible to have a normal day. She finally has a strong enough immune system to be able to see people and get out of the Hem/Onc Unit, and she gets a fever. She feels ill and is confined to the room, or at least the unit. I feel so bad for her. One of the side effects of the High dose Ara-C (one of the chemo drugs) is a fever and flu like symptoms. Her fever was at 100.6 the last time we checked, at 101 we will draw blood cultures and give her tylenol. Although fevers are a side effect from the Ara-C we have to start her on antibiotics and treat it as a normal fever until the blood cultures prove it otherwise. Please pray that it is only a side effect and will go away. She is on day three and only has two more days of this round. Thank You for your prayers.
Thursday, January 15, 2009
Chemo Roadmap
I discussed Kate's course of treatment with one of her primary oncologists today. I'm going to write it, as I understand it, so those of you who wish to know, will know.
The first two rounds of chemo, which Kate has completed without a hitch, were part of the Induction Phase. This phase included 3 different chemotherapy drugs: Ara-C, Etopicide & Daunorubacin. Round 1 lasted 10 days, Round 2 lasted 8 days. Daunarubacin can affect the heart, so Kate had echo's prior to each round of chemo.
Round three starts the Intensification Phase. She is now only receiving 2 drugs: Ara-C & Etopicide. Although she is only receiving 2 drugs, the intensity of the drugs are MUCH higher than they were in the Induction Phase. There are more side effects and we have to be more cautious. Round three is a 5 day course. She will have a 4th round of chemo in this phase while we wait for baby number two to arrive, and while we test the baby's cord blood to see if they are a match.
IF they ARE a match Katelyn will have approximately 3 high intensity rounds of chemo (even higher than the Intensification Phase), lasting approximately 6 days each, and will have the transplant after the third round. I am not sure if we will wait for her counts to recover or if they do the transplant before she starts building cells. I will find out. Those 3 rounds will last as long, if not longer, than the chemo she has already had as her counts will take longer to come up. After transplant it is approximately 6-8 weeks of maintenance and supervision, then she will be able to go home!
IF they ARE NOT a match Katelyn will, most likely, have one more round of chemo in the Intensification Phase. The protocol for AML (the general form of leukemia that Katelyn has) calls for only three rounds of chemo in the Intensification Phase. If she and the baby are not a match, we will most likely have one last round of chemotherapy and be done! -- I'm not sure what "done" means. We will still have to visit the clinic for labs and possible platelat & blood transfusions. I didn't quite get to that point in the plan.
I wanted to write it before I forgot bits and pieces.
The first two rounds of chemo, which Kate has completed without a hitch, were part of the Induction Phase. This phase included 3 different chemotherapy drugs: Ara-C, Etopicide & Daunorubacin. Round 1 lasted 10 days, Round 2 lasted 8 days. Daunarubacin can affect the heart, so Kate had echo's prior to each round of chemo.
Round three starts the Intensification Phase. She is now only receiving 2 drugs: Ara-C & Etopicide. Although she is only receiving 2 drugs, the intensity of the drugs are MUCH higher than they were in the Induction Phase. There are more side effects and we have to be more cautious. Round three is a 5 day course. She will have a 4th round of chemo in this phase while we wait for baby number two to arrive, and while we test the baby's cord blood to see if they are a match.
IF they ARE a match Katelyn will have approximately 3 high intensity rounds of chemo (even higher than the Intensification Phase), lasting approximately 6 days each, and will have the transplant after the third round. I am not sure if we will wait for her counts to recover or if they do the transplant before she starts building cells. I will find out. Those 3 rounds will last as long, if not longer, than the chemo she has already had as her counts will take longer to come up. After transplant it is approximately 6-8 weeks of maintenance and supervision, then she will be able to go home!
IF they ARE NOT a match Katelyn will, most likely, have one more round of chemo in the Intensification Phase. The protocol for AML (the general form of leukemia that Katelyn has) calls for only three rounds of chemo in the Intensification Phase. If she and the baby are not a match, we will most likely have one last round of chemotherapy and be done! -- I'm not sure what "done" means. We will still have to visit the clinic for labs and possible platelat & blood transfusions. I didn't quite get to that point in the plan.
I wanted to write it before I forgot bits and pieces.
Round Three Chemo
Katelyn had a bone marrow aspiration on Monday. She did well through the procedure but didn't wake up from the anestesia well. Sometimes she wakes up to other kids crying, and all she does is cry and squirm. That makes it difficult because she is supposed to lay down for an hour to help the sedative wear off. When she sits up and moves around she gets a headache and feels horrible.
The doctor came in on Tuesday, while Kate was napping, and said that her marrow looked wonderful! There were a lot of new, healthy cells! He didn't see any abnormal cells in the sample and is very happy about that! We are incredibly happy with these results! She is such a strong little girl! Todd and I are elated and hopeful and Katelyn is incredible!
This morning Kate and I went back to the clinic to start chemo. She had to be sedated again, and they infused the chemo into her spinal fluid. This time she woke up nicely! There weren't any screaming kids, just a beeping blood pressure machine. She woke up a half hour early, and of course, wouldn't stay still, but she was content pushing buttons and playing with stickers. Besides waking up unhappy, the most difficult part of having a procedure is the fact that she doesn't get to eat or drink anything all morning. The procedure doesn't happen until somewhere between 11 and 12 and she can't eat or drink until after. No food makes for a very crabby Katelyn.
We are very encouraged by Katelyn's progress! Our main nurse, Kate, told me yesterday that she and the other nurses were talking about Kate and how incredible she is. She said they all agree that if there were one child who was going to defy the odds and actually beat this rare form of cancer, that Katelyn is that child. She is this amazing light that will continue to shine forever and impact people in a positive way. I can only imagine and pray that she continue to affect people in a positive manner for the rest of her life. I also pray that the rest of her life be a VERY long time!
We are truly blessed and are very thankful for all of those blessings. Thank You all for your continued support and incredible prayers. We wouldn't be able to get through this without the support that we have received, and Katelyn wouldn't be the amazing fighter that she has proven to be without all of the prayers that she has been graced with. Thank You all. I will update about her progress soon!
Love,
Krystal
The doctor came in on Tuesday, while Kate was napping, and said that her marrow looked wonderful! There were a lot of new, healthy cells! He didn't see any abnormal cells in the sample and is very happy about that! We are incredibly happy with these results! She is such a strong little girl! Todd and I are elated and hopeful and Katelyn is incredible!
This morning Kate and I went back to the clinic to start chemo. She had to be sedated again, and they infused the chemo into her spinal fluid. This time she woke up nicely! There weren't any screaming kids, just a beeping blood pressure machine. She woke up a half hour early, and of course, wouldn't stay still, but she was content pushing buttons and playing with stickers. Besides waking up unhappy, the most difficult part of having a procedure is the fact that she doesn't get to eat or drink anything all morning. The procedure doesn't happen until somewhere between 11 and 12 and she can't eat or drink until after. No food makes for a very crabby Katelyn.
We are very encouraged by Katelyn's progress! Our main nurse, Kate, told me yesterday that she and the other nurses were talking about Kate and how incredible she is. She said they all agree that if there were one child who was going to defy the odds and actually beat this rare form of cancer, that Katelyn is that child. She is this amazing light that will continue to shine forever and impact people in a positive way. I can only imagine and pray that she continue to affect people in a positive manner for the rest of her life. I also pray that the rest of her life be a VERY long time!
We are truly blessed and are very thankful for all of those blessings. Thank You all for your continued support and incredible prayers. We wouldn't be able to get through this without the support that we have received, and Katelyn wouldn't be the amazing fighter that she has proven to be without all of the prayers that she has been graced with. Thank You all. I will update about her progress soon!
Love,
Krystal
Friday, January 9, 2009
Waiting, Waiting, Waiting...
Katelyn's feeling great! She's energetic, happy and never misses a beat! Her lungs are clear and everything is functioning well. Her ANC is still too low to test her bone marrow, but Todd and I have faith that this round of chemo was successful. If her ANC starts to steadily come up we may test again next week. I'm not sure when the next round of chemo will start, but I think it will be in the next week and a half to two weeks. After that chemo we will have to wait, what seems like forever, for her ANC to come up, as well as for the cord blood results from our new little bundle of joy. So, we will be in the air with everything until the beginning of March.
Katelyn has this amazing energy that is contageous! She brings a smile to everyone's face, and literally stops most people in their tracks. Whether people are commenting on her energy, her vocabulary, or her adorable outfit, they are all in awe and lovestruck. Adults absolutely adore her and kids, on the other hand, are cautious of her. She will see a kid down the hall and run to them so she can hold their hand and walk with them. Most little kids cry or run. Kate gets really sad when the other kids get upset. Her favorite age are the kids around 10. I think it's because Auntie Brooke is 12, and she sees a resemblance between her favorite Aunt and kids her age. Most older kids adore her as well, and will play, and walk, and entertain Katelyn as long as they can. When she hears kids crying in their room, she gets sad and you can tell she just wants to comfort them. I truly think she will be an incredible big sister. She is already so nurturing.
Today was Spring Cleaning day in Room 124. Todd is really good about keeping our room clean and germ free. Once a week we do a heavy clean with the cleaning staff; they move all the furniture and clean every square inch of the floor. Well today, we cleaned every square inch of every single thing in the room. Beds, cabinets, tables, chairs, and every single toy Katelyn has. We clean the toys often as well, especially if another patient comes to the room for a little visit, but today it was extreme. Room 124 is, I would be willing to bet, the cleanest room at Childrens Hospital. Nurses and Doctors always comment on how clean it is, how it smells good, and how organized it is. I guess, after 12 weeks, we just came up with a system that would keep us tolerant of this small living space, and keep Katelyn as healthy as possible.
Speaking of living space. The hospital is really busy right now. That doesn't sound right, huh. Busy means there are a lot of sick kids here. It's sad when people refer to it as a busy day. It makes my heart go out to all of the families who have to be here. I wish the hospital was empty, and kids weren't sick or suffering. As I was saying, there are a lot of kids here right now, and the waiting list at the Ronald McDonald House is getting extra long. In order to accomidate other families in need, we have to give up our room at the Mac house this week. Although I completely understand, I am dissapointed. We've pretty much moved into that room and it is going to be hectic moving out. Hopefully near the end of February we will be able to get back in there for a month or two. It will be difficult with the new baby, and staying at the Mac house will make it much more barable.
Yesterday I spent the afternoon with my good friend Courtney! We went out to this beautiful park by her house and took some maternity pictures! She did pictures for me two years ago when I was pregnant with Katelyn and, although I imagined the session would involve Todd and Katelyn, I was anxious to do them a second time with baby number two. We had a lot of fun and really enjoyed the afternoon. Courtney is a fabulous photographer, and never ceases to amaze me. She posted a sneak peek on her blog at www.ftcphotography.com. You are all more than welcome to go take a peek at them. It was a lot of fun!
Unfortunately, my heart has been really heavy this last week. Sarah, a beautiful girl with an amazing family, was taken from us on Monday night. I posted a prayer request for her last week, so some of you have read a bit about her. She was very sick. The cancer had taken over her entire body, and she was suffering. She was unable to eat, drink, speak, move, etc. She couldn't do anything, and was miserable. I know, and I hope her family knows, that she is in a better place, and she is no longer suffering; she is happy now. Although I know that, and I am grateful to God for taking away her pain, I am still heartbroken. I don't know how to express what I'm feeling or what is going through my head, but I am sad. I think seeing someone, whom I've grown to love and care for, suffer and die right next to me, right next to my daughter who is also battling cancer, makes this even more real for me. Although their cancers are different it hits very close to my heart. It brings to life that not all kids get better, not all treatments work, and not all families can put this experience behind them. We are fortunate that Katelyn is doing well, that she is happy, pain-free, and progressing. We are lucky & I am grateful. I ask you all to pray that it stays that way. Pray that Katelyn not only continue to do well, but that she stay well. I know it is selfish to want MY daughter to be healthy and live, but I am okay with that. I'm not ready to let go of that sort of selfishness and leave it up to Him alone. I need Him to help her stay here with me. For as strong as I've tried to be during this time, I don't think I can handle a turn for the worst. I want my daughter here, with Todd and I, and I want her to be happy and healthy. For that, I am selfish, and I am okay with that. I don't want to go through what Sarah's parents are going through, I am not strong enough. I've dealt with a lot of things in my short 25 years of life, and I can handle fighting for my childs life, but I can't handle losing her life. That, I know, is what would break me. So, again, I ask you to pray for her, pray that it be His will that she continue to win this battle with leukemia, and that she stay here and live a wonderful life with us.
I do have good news too. Haddie's oldest brother is a bone marrow match! He does not have hepatitus and is a perfect match for her! They will be doing the transplant in the next two weeks, and after 6-8 weeks of monitoring, Haddie, and her family, will be ready to return to New Guinea, with a fully recovered, healthy child! She will have follow ups for years to come, but the doctors are confident that a successful bone marrow transplant will cure her Aplastic Anemia. I am so happy for them and grateful that God has kept them strong and patient and is now giving them a cure. What an incredible thing.
Thanks for reading! I'll update again when I know more about Kate's bone marrow.
Also, The Dinner & Auction is coming up in two short weeks! I hope to see as many of you there as possible. If you, or someone you know, would like to donate an item or service to the auction, please contact me. Go to www.welovekate.com for more information!
Love,
Krystal
Katelyn has this amazing energy that is contageous! She brings a smile to everyone's face, and literally stops most people in their tracks. Whether people are commenting on her energy, her vocabulary, or her adorable outfit, they are all in awe and lovestruck. Adults absolutely adore her and kids, on the other hand, are cautious of her. She will see a kid down the hall and run to them so she can hold their hand and walk with them. Most little kids cry or run. Kate gets really sad when the other kids get upset. Her favorite age are the kids around 10. I think it's because Auntie Brooke is 12, and she sees a resemblance between her favorite Aunt and kids her age. Most older kids adore her as well, and will play, and walk, and entertain Katelyn as long as they can. When she hears kids crying in their room, she gets sad and you can tell she just wants to comfort them. I truly think she will be an incredible big sister. She is already so nurturing.
Today was Spring Cleaning day in Room 124. Todd is really good about keeping our room clean and germ free. Once a week we do a heavy clean with the cleaning staff; they move all the furniture and clean every square inch of the floor. Well today, we cleaned every square inch of every single thing in the room. Beds, cabinets, tables, chairs, and every single toy Katelyn has. We clean the toys often as well, especially if another patient comes to the room for a little visit, but today it was extreme. Room 124 is, I would be willing to bet, the cleanest room at Childrens Hospital. Nurses and Doctors always comment on how clean it is, how it smells good, and how organized it is. I guess, after 12 weeks, we just came up with a system that would keep us tolerant of this small living space, and keep Katelyn as healthy as possible.
Speaking of living space. The hospital is really busy right now. That doesn't sound right, huh. Busy means there are a lot of sick kids here. It's sad when people refer to it as a busy day. It makes my heart go out to all of the families who have to be here. I wish the hospital was empty, and kids weren't sick or suffering. As I was saying, there are a lot of kids here right now, and the waiting list at the Ronald McDonald House is getting extra long. In order to accomidate other families in need, we have to give up our room at the Mac house this week. Although I completely understand, I am dissapointed. We've pretty much moved into that room and it is going to be hectic moving out. Hopefully near the end of February we will be able to get back in there for a month or two. It will be difficult with the new baby, and staying at the Mac house will make it much more barable.
Yesterday I spent the afternoon with my good friend Courtney! We went out to this beautiful park by her house and took some maternity pictures! She did pictures for me two years ago when I was pregnant with Katelyn and, although I imagined the session would involve Todd and Katelyn, I was anxious to do them a second time with baby number two. We had a lot of fun and really enjoyed the afternoon. Courtney is a fabulous photographer, and never ceases to amaze me. She posted a sneak peek on her blog at www.ftcphotography.com. You are all more than welcome to go take a peek at them. It was a lot of fun!
Unfortunately, my heart has been really heavy this last week. Sarah, a beautiful girl with an amazing family, was taken from us on Monday night. I posted a prayer request for her last week, so some of you have read a bit about her. She was very sick. The cancer had taken over her entire body, and she was suffering. She was unable to eat, drink, speak, move, etc. She couldn't do anything, and was miserable. I know, and I hope her family knows, that she is in a better place, and she is no longer suffering; she is happy now. Although I know that, and I am grateful to God for taking away her pain, I am still heartbroken. I don't know how to express what I'm feeling or what is going through my head, but I am sad. I think seeing someone, whom I've grown to love and care for, suffer and die right next to me, right next to my daughter who is also battling cancer, makes this even more real for me. Although their cancers are different it hits very close to my heart. It brings to life that not all kids get better, not all treatments work, and not all families can put this experience behind them. We are fortunate that Katelyn is doing well, that she is happy, pain-free, and progressing. We are lucky & I am grateful. I ask you all to pray that it stays that way. Pray that Katelyn not only continue to do well, but that she stay well. I know it is selfish to want MY daughter to be healthy and live, but I am okay with that. I'm not ready to let go of that sort of selfishness and leave it up to Him alone. I need Him to help her stay here with me. For as strong as I've tried to be during this time, I don't think I can handle a turn for the worst. I want my daughter here, with Todd and I, and I want her to be happy and healthy. For that, I am selfish, and I am okay with that. I don't want to go through what Sarah's parents are going through, I am not strong enough. I've dealt with a lot of things in my short 25 years of life, and I can handle fighting for my childs life, but I can't handle losing her life. That, I know, is what would break me. So, again, I ask you to pray for her, pray that it be His will that she continue to win this battle with leukemia, and that she stay here and live a wonderful life with us.
I do have good news too. Haddie's oldest brother is a bone marrow match! He does not have hepatitus and is a perfect match for her! They will be doing the transplant in the next two weeks, and after 6-8 weeks of monitoring, Haddie, and her family, will be ready to return to New Guinea, with a fully recovered, healthy child! She will have follow ups for years to come, but the doctors are confident that a successful bone marrow transplant will cure her Aplastic Anemia. I am so happy for them and grateful that God has kept them strong and patient and is now giving them a cure. What an incredible thing.
Thanks for reading! I'll update again when I know more about Kate's bone marrow.
Also, The Dinner & Auction is coming up in two short weeks! I hope to see as many of you there as possible. If you, or someone you know, would like to donate an item or service to the auction, please contact me. Go to www.welovekate.com for more information!
Love,
Krystal
Friday, January 2, 2009
Our incredible daughter
Katelyn is such a trooper. I lose track of the days in here, but somewhere around 5 days ago Kate had the 102 temp, and a bacterial infection. Today she is both fever and infection free! Yay! She was finally able to leave the room and wander the halls. She loves to socialize! -- I wonder where she gets that! She sees the nurses, whom adore her, and she's all show! I think we have a little performer of some sort on our hands. Today we walked the halls for hours and hours. I think she'll actually sleep well tonight. The lack of stimulation the last few days have really affected our night time routine. Hopefully the extra stimulation will help with her rest.
She also has an ANC! Yay! It's low, still too low for visitors, but it's something! I think it's about 150. Last time it went up and down and up and down and finally skyrocketed to above 3,000. Hopefully it stays on the rise so we can keep our momentum and keep treatment going.
Thank you to everyone for their support! The blood drive in Ramona a few weeks ago was a success, and we are so grateful! There is also a breakfast at the Julian Legion this Sunday! We are so thankful for the Carter family, as well as the Legion itself. Their support and time generocity has been unbelievable. My family are incredibly grateful! Thank You!
I'd like to put a prayer request out there for a couple of the families here in the Hem/Onc Unit. Sarah, she's around 13 years old and has a brain tumor. In September she was doing gymnastics and having a wonderful summer, after severe headaches she was taken to the hospital where they found a severely advanced tumor. Radiation only made it metasticize and spread. The doctors told them they could go home and bide their time or try chemo, which they didn't think would work.... They tried chemo, it started to work, and ultimately failed. She is here, and her family is devastated. They need all the prayers they can get to save their little girls life.
Haddie, her family is here from New Guinea. They are missionaries and have relocated here to try and save their daughters life. Haddie is also around 13 years old, she has Aplastic Anemia. Aplastic Anemia, as I understand, is strange. Her body does not make any sort of blood, no white cells, red cells or platelats. It is completely curable with a bone marrow transplant. Haddie has 9 brothers and sisters. 8 out of 9 have been tested and 3 are matches. Unfortuately, all the children that have been tested also have hepatitus (which is incredibly common in their villiage). Since Haddie has no ANC (no immune system) she cannot have an infected transplant. Haddie's oldest brother is flying in from Iraq tomorrow morning to be tested and spend time with his family. Please pray that he is both a match and hepatitus free. I believe, due to the families beliefs, they will not use an unrelated donor; therefore her older brother is possibly their last hope.
There is also Julian, somehwhere around 6 years old. He is an adorable little boy. He has ALL. The chemo is making him very sick, and is very risky for him. Please pray that his body be able to handle the chemo so he can live a healthy long life.
Khuong, he is 15 years old, and our neighbor for the last 8 weeks! He, and his family, are incredible. He has three brothers who are here all the time. They have an incredible support system. Khuong got here within days of us and received chemo a few days before Katelyn. His ANC has never risen above zero. After almost two months of waiting they were forced to start chemo again. Usually they want to wait until the ANC is over 500, but in his case it was taking too long and they were afraid the the effects of the first round would diminish if they waited any longer. I'm not sure how much longer his chemo is, but please pray that he be able to recover quickly so he can gain momentum in treatment and possibly be home for his 16th birthday in March. That is the one thing her desperately wants!
Thank You for all of your prayers!
She also has an ANC! Yay! It's low, still too low for visitors, but it's something! I think it's about 150. Last time it went up and down and up and down and finally skyrocketed to above 3,000. Hopefully it stays on the rise so we can keep our momentum and keep treatment going.
Thank you to everyone for their support! The blood drive in Ramona a few weeks ago was a success, and we are so grateful! There is also a breakfast at the Julian Legion this Sunday! We are so thankful for the Carter family, as well as the Legion itself. Their support and time generocity has been unbelievable. My family are incredibly grateful! Thank You!
I'd like to put a prayer request out there for a couple of the families here in the Hem/Onc Unit. Sarah, she's around 13 years old and has a brain tumor. In September she was doing gymnastics and having a wonderful summer, after severe headaches she was taken to the hospital where they found a severely advanced tumor. Radiation only made it metasticize and spread. The doctors told them they could go home and bide their time or try chemo, which they didn't think would work.... They tried chemo, it started to work, and ultimately failed. She is here, and her family is devastated. They need all the prayers they can get to save their little girls life.
Haddie, her family is here from New Guinea. They are missionaries and have relocated here to try and save their daughters life. Haddie is also around 13 years old, she has Aplastic Anemia. Aplastic Anemia, as I understand, is strange. Her body does not make any sort of blood, no white cells, red cells or platelats. It is completely curable with a bone marrow transplant. Haddie has 9 brothers and sisters. 8 out of 9 have been tested and 3 are matches. Unfortuately, all the children that have been tested also have hepatitus (which is incredibly common in their villiage). Since Haddie has no ANC (no immune system) she cannot have an infected transplant. Haddie's oldest brother is flying in from Iraq tomorrow morning to be tested and spend time with his family. Please pray that he is both a match and hepatitus free. I believe, due to the families beliefs, they will not use an unrelated donor; therefore her older brother is possibly their last hope.
There is also Julian, somehwhere around 6 years old. He is an adorable little boy. He has ALL. The chemo is making him very sick, and is very risky for him. Please pray that his body be able to handle the chemo so he can live a healthy long life.
Khuong, he is 15 years old, and our neighbor for the last 8 weeks! He, and his family, are incredible. He has three brothers who are here all the time. They have an incredible support system. Khuong got here within days of us and received chemo a few days before Katelyn. His ANC has never risen above zero. After almost two months of waiting they were forced to start chemo again. Usually they want to wait until the ANC is over 500, but in his case it was taking too long and they were afraid the the effects of the first round would diminish if they waited any longer. I'm not sure how much longer his chemo is, but please pray that he be able to recover quickly so he can gain momentum in treatment and possibly be home for his 16th birthday in March. That is the one thing her desperately wants!
Thank You for all of your prayers!
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