Tuesday, December 30, 2008

Fever & Update

Unfortunately Katelyn has had a fever for the last few days. It came on Saturday and is still going strong. It's peaking at 102'ish. We can give her tylenol, which quiets it for about 6-8 hours, then it comes right back. She has a bacterial infection again, and is on antibiotics for that. We aren't sure if the fever and infection are related yet. If they are, the antibiotics should kill it and we hope she will start feeling better. If the fever doesn't subside by tomorrow the doctor will order an echo, ct scan, and some other tests. We hope it doesn't come to that and she can fight this off on her own.

Her sleep patterns have been completely off because of the fever and up in medications. Last night she woke up at 3am and didn't go back to sleep until 6am. She wanted to play, watch tv, color, paint, walk, fly... if she can say it, she wanted to do it. Of course I spent those three hours trying to convince her to go to sleep. At one point she climbed off my bed and started walking around the room, I watched but acted like I was sleeping, finally she starts stomping her feet running around saying "Happy! Happy! Happy!". She does "Happy Feet" for the nurses and patients... anyone who asks her to do happy feet, she stomps her adorable little feet and runs around. It is so cute. She is incredible. From 3-6 she was happy, talking sweet, giving hugs and kisses, and didn't even throw a fit when I kept telling her she couldn't do things. She would just counter my "it's night night time" with another suggestion. Finally, around 6 she nodded off.

We love to color, read, dance, paint, stack blocks, push our baby in the stroller, feed her, burp her, rock her, wrap her (in her blankie). Katelyn is growing and changing so much, it is amazing to watch. It's difficult knowing that she'll be here for many more months. It's saddening.

The doctor came in today, and after talking about our current battle with the fever and bacterial infection we talked timeline again. He also thinks that unless the new baby is a match the risks outway the benefits of the stem-cell transplant. Without the stem-cell transplant she will have additional chemo, two or three rounds, which will land us here two or three more months. With the stem-cell transplant (I misunderstood the other doctor) she will not need more chemo immediately, but will also be in the hospital for a couple months while they track her cells and the success of the transplant. Our original hope to take Kate home sometime in March is no longer an option. We just hope we might be able to get her healthy and home before her second birthday! Todd and I have even more to talk about and figure out. This is going to be even more of a balancing act when the new baby is here. I'm sure we can do it, I know we will find strength through God, prayer, family and friends.

On a positive note, Kate is starting to make platelats again! After her last round of chemo, her platelat count came up, and everything else followed within a few weeks. This is great, her body is starting to produce cells again. We will have to wait awhile longer, for her ANC to come up, but we hope that the next bone marrow aspiration will show us a lot of healthy cells! Most of all we hope that Kate is in remission! Please pray for that!

I had a sonogram today, the baby looks great! I am 30 weeks and the baby weighs 3lbs 2oz. Everything looks good, and the baby is very active. While we were looking at the baby's face s/he was opening and closing its mouth, sticking out its tongue, covering its face with their little arms. I had a huge smile on my face and am so grateful to have such an active little baby inside me! ( I don't like to refer to the baby as an "it" but I have no idea how else to say it ).

Todd is doing well. He gets stircrazy here, but manages to stay distracted when he can. I'm not sure if I mentioned in a previous post, but we met the CEO/President of Sharp Hospital a few weeks ago. Todd and Mike really hit it off, and Mike offered his help in getting Todd going with his nursing career. We're in talks with them about where to start and what resources they have to offer. It is a blessing to have met Mike, and to have his assistance. We hope to have Todd in the field soon. I'll update on that as soon as we know more and are making progress.

Thank you to everyone for checking in, praying, and being there for us. We couldn't get through this without all of you.

Love,
Krystal

Saturday, December 27, 2008

Merry Christmas

We had a wonderful Christmas! Katelyn absolutely loved opening gifts, she had a blast. It took awhile, but that's how kids are. Todd and I were very happy to be spending the day with our little family. There were a lot of people in this unit, and everyone seemed do do well and take the day in as well as they could. One of the department directors brought lunch, as the cafeteria didn't serve anything special, so it was a nice change in the food department. Katelyn is on a low bacteria diet, so she can only eat food that is ordered through room service. We can't wait for her to be able to eat other foods again. Hopefully she will still have the same appreciation and openness for food that she had before we came to the hospital.

Katelyn did incredibly well through the last round of chemo. We kept her with constante anti-nausea medicine to avoid any nausea or lack of appetite. She ate like a champ and had no loss in energy. You would never had known she was having chemo at the time. People are incredibly impressed and happy to see how well she is handling everything. Todd and I are very grateful for her energy. We are waiting for her ANC to come up so we can test her bone marrow again, and start, what we hope will be her last round of chemo. We hope this round has put her in complete remission. If she is in remission we need prayers that she stay in remission FOREVER! The doctor says a lot of times if a child stays in remission for five years, she could be considered recovered or cured. That's what we're going for! They also say that often times if she was going to relapse she would do it in the first three years. We don't want that.

Since Kate respoded so well to the first round of chemo, and if the second is as successful, the doctor says she will have the same recovery chances as any other child with AML. Although Kate has 6 bone marrow matches already we may hold off on the stem cell transplant, unless the new baby is a match. I don't know all the specifics, but with an unrelated donor there is a high risk of graft vs. host complications. This means that there are high chances that Kate's body will reject the transplant. . If the new baby is a match (there is a 1/4 chance) the chances of graft. vs. host. is significantly less. There are also other major side effects to the chemo that comes with the stem cell transplant. The heavy chemo she would receive would diminish the possibility of her ever having children. It would kill all of her eggs. This breaks my heart. If the new baby is a match, we have to go ahead with the transplant as it is still her best chance of completely recovering from this disease, and her health is the most important thing. We talked to the doctor about options as far as possibly extracting and storing some of her eggs for the future. Apparently there isn't a technology that stores eggs for a long period of time. The only time that eggs are extracted they are immediately fertilized. We obviously wouldn't want to fertilize our 18 month old's eggs yet. It is also an invasive surgery. Anyway, it's not an option. We will cross that bridge when we come to it.

That's all we know for now. Right now we're just hanging at the hospital until her ANC is high enough to move on to the next step. Still not allowed visitors, which is difficult. Todd and I are staying busy and positive. I'm feeling well and the baby moves around a lot. We can't believe there are only 2.5 months left before our new arrival.

We are talking more about our living situation and hope to be in something in February. We think being in the city will be more beneficial for us. Todd will, hopefully, be working in a hospital early next year, and Katelyn will need regular clinic visits here at Children's Hospital. Although we may be spending more on rent, we will be spending less on gas and time away from home.

Thank you to everyone for your thoughts and prayers during this time. We are incredibly appreciative. Merry Christmas!


Love, Todd & Krystal

Thursday, December 18, 2008

Blood Drive for Katelyn!

Blood Drive in Ramona
11:00am - 4:30pm

VFW Post 3783
2247 Kelly Avenue
Ramona, Ca 92065

More information at:
www.givelife.org code# vfw3783

Contact Mary Rozendal
(760)789-9709

Free Lunch
Free Coldstone Creation
Enter Regional Drawing for $500 Shopping Spree

Tuesday, December 16, 2008

Round Two Chemo

Katelyn has been incredible. We started chemo on Friday the 12th & will end on Saturday the 20th. We keep her on anti-nausea meds around the clock and a little extra at night. Last chemo she was getting sick at night, so we wanted to avoid that this time around. It seems to be working. Her appetite is decreasing a bit, but she's still eating some, which we are thankful for. Unfortunately, she contracted c-dif, which is a bacteria infection. We found it on Friday and were confined to our room until she had three negative tests for it. Thankfully, the c-dif was only found that one day and the antibiotics she was given immediately cleared it up. We got off of "lockdown" today and Katelyn was incredibly happy to be able to roam the halls and walk! She did suprisingly well locked up in the room for four days. We are thankful that Katelyn is such a trooper... she makes this all seem barable.


Todd was able to attend the dinner in Julian on Friday night, as well as the golf tournament on Saturday. I was afraid that he might catch a cold in the rain while golfing, but am thankful that he didn't and has been able to relieve me the last couple of days. Thank you to everyone who went to the dinner and played in the golf tournament! I was told that both were a wonderful time! We appreciate the support more than words can say. Thank You.


I am feeling well! Feeling more and more pregnant! I am now 27 weeks, and my belly is getting bigger. The baby is healthy and active. Todd and I are excited about the suprise we will have come March, I think we will stick with it and wait to find out the sex! There is another family here that just had a baby. We met them a few weeks before the baby was due, but it is reassuring that it can be done. Their adorable two year old daughter, Lilly, is having her last round of chemo this week and they will be free and clear of the long hospital stays starting tomorrow. I'm excited for them to be able to take their children home and live life. I hope that is in our near future. I am so grateful for my family, for my husband, and my children. Although these circumstances are less than ideal, I wouldn't change my family for anything. I am blessed.


I have been working on Kate's scrapbook when I go to the Ronald McDonald house. It is turning out really nice! I am finally to the fun part; embellishing! Embellishing is the most fun, and the most expensive! It's horrifying how much stickers cost! I think I will have her first year done by Christmas, and I know she will LOVE it! It is a great distraction for me and will be a wonderful keepsake for Katelyn. She will appreciate it someday.


There is a Blood Drive for Katelyn on Saturday the 20th in Ramona at the American Legion. I will get the information on the website... Please check it out!


Love & Thanks to All!

Tuesday, December 9, 2008

Let me re-phrase...

As I mentioned in my previous post, the Doctor who told us Katelyn could be in remission was not her usual doctor. She looked at her most recent bone marrow results and reported what she saw. On Monday Todd and I spoke to one of Katelyns primary Oncologists. I mentioned that another Doctor said Katelyn could be in remission and she said she "wouldn't put it that way". There were significant changes in Katelyn's test results, and they were encouraging. She reacted very well to to the chemo last time, and shows a significant decrease in leukemia cells from her bone marrow results. It also doesn't show the trisome that it previously showed. It did show more blasts than previously. She now has around 6% blasts and it was 2% in the beginning. The blasts aren't considered "bad", which is encouraging. So, to make it short, Kate did really well with the last chemo, she isn't in complete remission, but we have hope that the next round could put her there.

Her ANC went up dramatically from yesterday. Our goal is for it to be over 500, preferably 750 or higher so we can start chemo and she can have visitors. Yesterday it was 320 and today it went up to 850. We are doing a bone marrow aspiration tomorrow, as well as starting her spinal chemo. We will wait one more day to measure her ANC, and if it stays steady, above 500, we will start her IV chemo. This round will be 8 days and, again, be a big waiting game. We hope her ANC doesn't take as long to come up next time.

She has been unhooked from her IV pole for the last three days, and it has been wonderful. She truly loves her freedom, and it is much less stressful on todd and I. We don't have to constantly be by her side to make sure she doesn't tug on her lines or get caught. She is loving her freedom. Although we're anxious to start chemo, to get it over with, it's nice not being hooked up. We are glad to have a few more days of freedom from the tower.

Thanks to everyone for their kind words, thoughts, and prayers!

Love,
Krystal

Saturday, December 6, 2008

Amazing News!

The doctor came in yesterday to let us know the results of Katelyn's bone marrow aspiration and biopsy. She explained it in a manner that was confusing. I wasn't sure what she meant, she said that she believed the results were good, but we still didn't understand what "good" really meant. Another doctor came in today to go over things with me so that I would understand better. The gist of it is, the first round of chemo did it's job! We are still waiting on some cytogenetic tests that are testing to see if the translocation is apparent, but from the looks of the test results that we do have, she could possibly already be in remission!!! WOW! I don't even know how to explain the way that I feel right now. I was glad to hear the doc say that it was good news, even though I didn't know what exactly that meant. This other doctor used the words, "it looks like, even at a molecular level, she could be in remission". That is incredible news. The prayers and thoughts and support are really working, and we are so grateful! Those words were the last thing I expected to hear. I didn't want to get my hopes up and ultimately be let down. We were told that this type of leukemia is incredibly difficult to get into remission, and to keep in remission. We still have to be very careful and very on top of treatment, but I have full confidence that Katelyn will beat it! Right now we are waiting for her ANC (absolute neutraphil count = how we measure her immune system) to get up to 500 for visitors, and above 750 to start her second round of chemo. So, right now, it is just a waiting game for us. Her ANC is all over the place right now, it's bouncing between 50 and 250 every few days. So, now we just need prayers for her ANC to rise so we can get back to chemo, and eventually be able to take little Miss Katelyn HOME! Yay! She will still have 3 rounds of chemo, and a stem cell transplant. Since her ANC takes so long to get back up, we'll most likely be here through March and the birth of baby number two. Todd and I have some talking to do but I would like to get into a place that the four of us can call home sometime in February. So, if you hear of anything affordable and cozy, let us know! -- With Kate's situation and a new baby, we need new carpet too.

Thank you to everyone for everything. We couldn't be more humbled and happy.

Malakai is doing much better as well! His latest issues have had to do with jondis. His jondis was making him incredibly tired, and unwilling to eat. He is finally eating enough, and consistently that he may be able to go home with Mom & Dad later today. We are so anxious to get him home and happy with his wonderful parents. I'll update when I know more.

Love and Thanks to all!

Wednesday, December 3, 2008

This morning, I was laying next to my courageous daughter watching her sleep. I was praying for God to take care of her and keep her strong. When I finished my prayer, still with Katelyn in full view, the most incredible, dream-filled, angellic smile appeared on her face. In that moment I had faith again that Katelyn can beat this, God will provide for her, and she will go on to live a long, wonderful life.

Tuesday, December 2, 2008

Softball Tournament & Golf Tournament

Co-Ed Softball Tournament
Saturday, December 6th
Ramona Softball Fields
Team Entry: $300
Contact Susanne to enter:
760-310-0089

Bake/ Mistletoe Sale
Saturday & Sunday, December 6th-7th
In front of Rabobank, Julian

Golf Tournament
Saturday, December 13th
San Vicente Golf Course
Cart & Green Fees $100
Contact Brian 760-644-5978
or Jeff 760-315-2253

http://www.welovekate.com/ for more information and events


No News Yet

There are some more abnormalities in Kate's bone marrow. We're not sure what is going on. Her blood and bone marrow have been dispersed to different labs and are having different tests and stains done to see what is going on. Although we have been optimistic, it's difficult with no news. In this case, no news means it's not good news. The doctors say it won't be until next week that we get some results. We will hold off on the chemo until after results are in and decisions are made. Todd and I would like to bring in doctors from other cancer specialized hospitals to get second opinions before we start another round of chemo that may not work. Keep on praying for our little Miss Kate.

Malakai is doing better. He can now hold down food, and his heart rate is stabilizing. He will be in the NICU until Thursday and will spend some time with Mom and Dad in the hospital. Pray he stays stable and can finally join Mom & Dad at home, in his wonderful nursery.

Love to everyone,
Krystal

Monday, December 1, 2008

Baby Burrows


It's a BOY!

Three sonograms, & 12 hours of labor later Audrey came out a boy! We were all in shock! It's incredible. His name is Malkai Lucas Burrows! He was 18" & 7.2 lbs. Once he was born he was taken to the NICU due to irregular breathing patterns. He was put on oxygen as well as had a stomach tube inserted to keep air out of his stomach. Once we left, after 2am, he was being taken off of oxygen and getting ready to be fed. This morning I learned that he was unable to handle the food and began throwing up, he also is having irregular heart beats and has to stay in the NICU. Our hopes were that he would be with Nut & Jayd this morning, but it looks like he'll be spending more time in the NICU.
Jayd has been able to be with him as much as possible. Jeanette is doig incredibly well. I am so proud of her! Jeanette ended up with a c-section because the cord was wrapped around Malakai's neck & his heart rate would significantly drop with every contraction. After she was at a steady 7cm and his heart rate wasn't recovering as quickly as possible, they decided to have a c-section. Jeanette hasn't been able to spend much time with him. She was finally able to nurse him this morning, and has been pumping to get her milk supply flowing. I think she'll get into a regular nursing schedule. Jayd was a champion through the whole thing, and he still continues to show incredible strength; they both do. I am so proud of them. I know with prayers and time Malakai will be okay and ready to be with the parents who have so eagerly waited his arrival.
We're still all in shock that he is a he and not an Audrey!

Please Pray for Malakai, Jeanette & Jayd!

I'll update in the next day or two with results from Katelyn's bone marrow aspiration. The results aren't in this morning, so we hope to get them tomorrow. Let's pray that those blasts are good cells!

I have a sonogram today at 1:30. I'm excited to see the little peanut growing inside me! I feel movements all the time, and my little sister, Brooke, got to feel some kicks yesterday. She was really happy to experience it. Katelyn loves the baby in my belly. If you ask her where the baby is, she'll point to either her or my belly and tell you "belly". She gives kisses and is already an incredible big sister.

We love you all!