Loving Life

Kate has always maintained her happy, positive disposition (except maybe for those few months of steroid rage) and that trend has continued. I realize that I have neglected to post for the last 2 months, which is probably due, in part, to the fact that we had a baby last week and due, in part, to the busy holiday season. Still, I feel the need to update you with her progress.

As the year winds down, and the holidays approach we celebrate the birth of our Savior. I can't think about His birth without thinking about His death and sacrifice for us. It is for this reason that I am so grateful to Him. It is also a time for thankfulness. Kate's amazing progress through her journey to a cure, tops the list of my reasons to be thankful! I thank Heavenly Father each day for bringing her into our lives and for allowing us to keep her here until a good old age!

Her last clinic visit was wonderful with continued good news of an ANC at 1500. Her worst curse is a never ending cold with accompanying hacking cough but if that is the worst of the winter, we'll take it!!! On her last clinic visit, 2 weeks ago, Kate wanted to make her "nurses and everyone" cookies, so we found this cute recipe in a magazine and went to town. She happily bopped around the clinic sharing her goods with all those she cares about and who now feel like family. She has also made them another Christmas gift, fun bookmarks, and can't wait to bring them to the hospital next week.

Kate remains a tender hearted, loving little girl who shares her sunshine with those around her. How blessed we are to be in close proximity!

Still Great News

So Kate went back to clinic on Oct 9th for her lumbar puncture, chemo and IVIG. Her blood counts are nearly identical to one month ago and they even had to increase her dosages of medication to account for all her growing! She continues to do so wonderfully, that at times I have to remind myself that we aren't out of the woods yet.

We allow the doctors to pour toxic chemicals into our child's blood stream and inject it into her spinal canal and brain because it is what will save her life. That being said, it is so comforting to see that she is keeping up physically despite the treatments. Academically, Kate is reading at a second grade level and she is a math whiz, with the subject coming as easily to her as it does to Jackson. While that may seem like a little thing to other Mom's, it gives me some hope that all of these drugs won't have left her "damaged".

This week we did have some terribly sad news of the cancer variety. One of Kate's closest friends called us this week to say that they had another friend diagnosed with pre-B, the very same day we were in the hospital getting Kate's treatment. This little 3 year old will be treated at Egleston and be on the same protocol as Kate, so hopefully we'll be able to be of some support for them. I know that for us it was unbelievably helpful to be able to talk with people who had walked down the road that was so foreign to our family. One thing we have learned from all of this, is that there are so many wondeful people in the world who are ready to lend a hand, a shoulder or an ear at any time (and that's a lot of body parts) :) I hope to be one of those people for others.

Another One Down

The posts have been few and far between because Kate is trucking along very well and we haven't had tons to report. Today was a great clinic day for Kate. She started out with the dreaded finger poke but braved through it. It is kind of funny how she views that as the worst part of her trips to the hospital and not the nausea, lumbar punctures or port accesses.

Her hemoglobin, hematocrit and platlets were all nearly within normal ranges and her ANC was 1500. They are going to keep her chemo doses (Vincristine and Methotrexate) where they are (at %75 strength) for the duration of her treatment because her blood counts are right where they should be. We are also so happy that since beginning the monthly IVIg transfusions Kate has been doing remarkably well - No fevers and barely any colds.

Despite being premedicated with Tylenol, Zofran (anti-nausea) and IV Benadryl, Kate still had a little reaction to the IV Pentamadine (antibiotic) today. She told me that her mouth/tongue felt "funny and wiggly" but gratefully no swelling developed so we kept on. The IV Benadryl worked like a charm and Kate slept for the entire 5 hours there waking up only 15 minutes before it was time to go. What a blessing to sleep away hours of treatment with the only sign of trauma being bed head!

She's set for another 4 weeks until we go back for her lumbar puncture, IV chemo and transfusions.

Clinic Visit

Kate's clinic visit was same as usual except that I wasn't there today (at home with Jackson who has a fever). I'm pretty sure they'd frown on me bringing in a child with a fever! Her counts looked good with an ANC of 1500. Accoding to Jason, she received the IVIG, antibiotics and Vincristine without any problems so all in all, it was a great day!
She doesn't have to go back for treatment for another month either. Kate was asked to participate in the Neal Boortz radio telethon next Thursday so we'll back for that though, remember this? She had a lot of fun on the radio before and I suspect she'll ham it up again. You can listen online so when I more details I send them your way.

First Grade

If you can't tell, Kate was very excited to begin first grade yesterday.

She has a few friends in her class from last year but is just as excited to make new ones this year.

Her teacher is Ms. Herndon and according to Kate, "she is so sweet". I have also heard that she keeps the kids focused and engaged which pairs nicely with being "so sweet". We are all looking forward to a great year.

More Updates

We made it back from Utah in time for many doctor appointments. One of which was Kate's monthly chemo treatment plus antibiotic and IVIG transfusions. Her ANC today was 930 and the rest of her counts were very good. The best news of all was that her lumbar puncture was perfectly clean today. There were no bad or "atypical" cells at all, so that fleeting worry has been put to rest.
There was nothing different about the procedure for this treatment than the last but Kate was very nauseous and sick for it. I never cease to be amazed at how quickly she bounces back from her sickness though. She was pretty much feeling well the next day and wanted to go to the pool. She is happily enjoying the last 2 weeks of her summer before beginning the big 1st grade!

Treatment Update

Kate is doing well still. I realized that I hadn't posted much on her progress for the last month and decided to get to it. Kate went to the clinic two weeks ago and her ANC was an astounding 2300. Her Hgb and platelets were normal as well so they kept her chemo at the %75 dose. (Remember, they cut her chemo in half after her last hospitalizations when her counts were so low and are slowly building her back up).
Today we went for her long treatment day. Kate'sANC was lower at 1100 but that is still great. I think it might be lower because she has some diarrhea and junky cough (always) so she's fighting a little with those cells. Today she had a Pentamadine transfusion (antibiotic), Vincristine (chemo) transfusion, and IV Ig (immunoglobulin) transfusion. It was a long day but the premedication with Benadryl and Tylenol (so she doesn't have a reaction to the IV Ig) helped her to blissfully sleep several of the hours away. Because her counts came down they are going to keep her at the %75 strength chemo dosing and see how things look next visit.
One kind of scary news today was that her last spinal tap revealed 1 blast in the cerebrospinal fluid. The blasts are bad cells and in large numbers mean that she has relapsed. Our doctor and nurse told us not to worry about it because it is mostly likely just a precursor cell and not a bad thing but it is SO hard not to worry. I am comforted that they don't want to do another spinal sooner than scheduled and that she is asymptomatic. I am trying to remind myself that if they aren't worried then I needn't stress. So, the next LP will be on July 17 and we'll check out the CSF then. If you are so inclined, a special prayer couldn't hurt!

She's Got a Plan

Jason recently asked Kate what she'd like to be when she grows up. Until this time, the usual response was a veternarian, doctor or scientist with the most common response being a veternarian. Well, this time Kate's answer was "a veternarian, or maybe (dramatic pause)... A STAR". Hey, at least she's aiming high! Watch out Hannah Montana!

Happy Birthday

Miss Kate turned 6 years old today and celebrated exactly how she wished - a day at the pool, followed by spaghetti and meatballs and ending with Carvel ice cream cake! It was super fun to hang out as a family and enjoy the time together.

As we reflected on the changes in the last year, we were profoundly grateful for how far Kate's come. Last year our heads were still spinning as we helplessly watched Kate endure the tortuous induction chemotherapy and steroid pulses. I can't seem to be able to describe the pain that our entire family experienced during that time.

This year we have a happy, energetic girl who is looking forward to swim team meets and playing with her friends. We were elated to celebrate another year of Kate's life and reflect on how truly blessed we are! WE LOVE YOU KATE!!!

Vincas for Kate

There really wasn't much competition for other plants when I considered what flowers would adorn our walkway. Vincas will forever hold a special place in our family's heart! So Kate, these Vincas are in honor of you. Our brave little fighter!

680 The Fan Telethon

Kate, Jackson and Ava have been on the radio all day! You can continue to hear them (online even if you are out of state) at 680thefan.com. Intermittenly, you'll hear me tell Kate's story, I heard Kate talk about her "Kisses for Kate" bracelets and what they mean, and Jackson/Ava have corner on the market for tag lines like - "Thanks for donating", "Don't change the station" and "We'll be right back!".

One Year

This year was paradoxically the longest and fastest year of my life. One year ago today we were in New Hampshire and received the bone marrow biopsy results. Until I had those results in hand I was still holding some hope that she didn't really have leukemia, that it was just a bad virus and that we'd go home soon. As you know, that didn't turn out to be the case but it hasn't stopped us from going home and trying to get back to our "normal" lives.
The day of diagnosis, Jason and I committed to giving all that we had to help Kate fight for a cure from leukemia. We believed, then and now, that she'd achieve it but have been so impressed with how see has handled this journey. I continue to be in awe of my little girl's positive outlook, strength and determination as she gracefully fights this battle.
While I have a feeling that April 23rd will forever have significant meaning in our lives, we are now looking forward to a new date - July 4, 2009. I can speak for the entire family when I say that we can't wait for that date to replace April 23rd in importance.
Thank you to every one of her supporters, both the hands-on everyday friends and those from a far who show support with their prayers and words of encouragement. The journey to this point has been manageable because of you.

Fears

Jason and I have noticed that Kate has some residual anxiety after each hospitalization. She doesn't sleep well, is tearful and doesn't want to go to school. This goes on for weeks too. When I say she doesn't sleep well, I mean to say that she wakes up 4 or 5 times during the night crying and coming into our room. She wants us to stay awake until she intially falls asleep and if she wakes up she wants us to stay up until she falls back asleep.
Try as we may with positive praise, treats and yes, at time consequences (ie-no treats) she isn't making any progress. I have tried to come up with a clear reason for this but have been unsuccessful. It is that she has gotten used to us sleeping with her in the hospital? Does she have more anxiety and fear about being sick than we know? Is she still not feeling back to her baseline and this is simply a manifestation of her feeling icky? Maybe some combination of these and more? We have no idea but are struggling with it. She is much less happy than she was in the hospital even and that worries me.
Kate is cleared to go back to school but cries when we even mention it. She says that she just wants to be with me and that she doesn't have any friends (which couldn't be further from the truth). I wonder if she feels like they have kept on without her and she'll be left out.
I am trying to balance encouraging her, without pushing or coddling to her detriment. I fear that I am not the best with this balancing act. Don't worry you say. But it's my job to worry. That's why they pay me the big bucks..

Results

The premlinary bone marrow results lood great! Dr. Keller checked out the slides and said that things look normal. Of course the bone marrow will get sent out and more specific testing will be done (too complicated to explain) but I think that this information is all we needed.
Kate is still feeling pretty tired and is not back to her happy self but hopefully we'll be getting there soon. I am just thrilled to know that her bone marrow is leukemia free!

Bone Marrow Day

Kates counts were better today (ANC at 370) but still low enough for them to do the bone marrow aspiration. I thought that they weren't going to give her IV chemo today but they did. Apparently, they don't stop the IV and spinal chemo that are scheduled if her counts are low. We do hold her usual home doses of chemo though until the counts come back.
Kate did beautifully with the procedures, mostly because they used an anesthesiologist and a wonderful medication called Propofol. Kate fell asleep in seconds and woke up half an hour later with only an aching hip as a reminder of the events. She was hilarious coming out of the sedation. She was woozy and wobbly and cracking the nurses up.
We should get the results of the bone marrow tomorrow and I'll post them. I have a good feeling that it's going to be alright!

So close

Quite shockingly, Kate's ANC went down to 150 today. Her hemoglobin and platlets also went down so they aren't letting us go. The on-call doctor said that she wants to see things moving in the right direction before we can leave. Bummer.
On the positive side, Kate is feeling great. Hopefully things will turn around soon.

Looking good

Kate's ANC came up for the first day since our admission. It is still below 500 but just barely! It is 6pm and she hasn't spiked a fever either. We are so happy and are hoping that she'll remain fever free tonight. If her counts go up again tomorrow and she's fever free until then, we'll be going home on Sunday afternoon!
Jason and I were really worried last night because Kate had such a bad headache. She asked us to turn off all of the lights and went to sleep at 8pm. Throughout the night she'd wake up periodically wimpering and rubbing her head. I didn't know what today would bring but gratefully it hasn't included a headache or fever.
Here's to hoping we'll be sleeping in our own beds tomorrow!

Curses...

This has been the pattern for the last few days, Kate wakes up feeling well in the morning. She is playful until the early afternoon and then poops out. Today, about 2pm, she started complaining of a headache and sure enough she had a fever again! They took more blood cultures and now we won't be going home tomorrow (insert heavy sigh here). Her ANC was slightly lower still today (at 410) but she has a lot of monocytes which indicate that her bone marrow is working. I sure hope that the ANC goes up soon because we can't leave until it does or until she stops with the fevers! Her virus panel was all negative and her blood cultures have been negative to this point.

In good news, I spoke with her doctor today who has a way of calming my fears. He told me that we are planning on a bone marrow aspiration on Tuesday to see what the marrow looks like (translation-to be sure that Kate hasn't relapsed and that there are no leukemia cells). In the same breath though he reassured me that she looks good and that even if we do a bone marrow it will probably be just fine. That talk definitely made me feel better about waiting until Tuesday for the procedure.

In other fun news, The Humane Society brought puppies to the hospital to play with the kids. Kate was in heaven with those little guys and didn't even mind them crawling all over her. I felt so grateful for those volunteers who made our day a lot brighter with their hour of service. Here is a picture of Kate holding Linus.

Day 2

Kate seemed well this morning. Her ANC was a little lower today at 420 but not by much. When I got to the hospital she was smiling, happy and no fever. In the early afternoon she told me that she was tired and wanted to take a nap though - weird. During the nap they started her nearly 4 hour IV Ig transfusion. When she woke up about 2 and 1/2 hours later she was trembling all over. As she stood and the sink and washed her hands she looked and her shaking arms and legs and asked me "Why is my body doing this?". Within 1/2 hour she spiked a temperature again but it came down quickly with Tylenol. We're not entirely sure if this was a reaction to the IV Ig or if it was due to the fever.
We are hoping that she'll get to leave in another day. This time we'll have to go back to clinic sooner than our usual day (Thursday) and check her counts. Because she's been off chemo since the 29th of March and her ANC is still below 500, she'll have to get a bone marrow biopsy on Tuesday to make sure that everything is ok. If her counts are high enough then she'll start chemotherapy again.
Tonight as we watched movies, Kate looked at me and whispered, "I like home better". Even with ice cream, popsicles, a fantastic playroom and presents, she still prefers good 'ol home (me too!). For now, we are continuing with IV antibiotics every 8 hours and living for the next 24 hours to see the "counts".

Ugggghhhh!

Yes it's true. We are back in the hospital. This time, Kate has a 104 temperature and a horrible wet cough. I was concerned that she had pneumonia but the chest x-ray looks clear. The blood cultures are cooking, a viral panel has been added (she actually did great with them squirting water up her nose and then sucking it out - much better than I would have done.) and we are waiting to see when they'll let us go home again.
We are hoping that it will be 2 days from now when the blood cultures come back negative. This is such a bummer for little Kate and she is taking it much harder this go around. She cried on the way to the hospital, "Mom, I just want to be at home". My eyes filled with tears as I felt her pain. She is resigned to our stay now and is better but will be most ready to leave whenever they give us the thumbs up.
At least we were able to enjoy 3 days of spring break together. That is my attempt at the glass is half full. I'll keep trying until I believe it...

Still Holding

Today we went to the clinic today to check on Kate's counts. Her ANC is still below 500 (at 480) so her daily chemo, Methotrexate and Bactrim will continue to be held until we recheck the counts next week. From the rest of her blood counts we can tell that the bone marrow is working, it's just that her cells are all being used up fighting this current virus. Despite her junky cough, Kate is feeling well and is ready to go back to school. I do get nervous sending her with low counts but I am reassured that it is best for her to be there.
Also, her IgG level was low so they are going to start giving her monthly transfusions of that. Hopefully the immunoglobulin transfusions will help keep her healthier more of the time. Additionally, they are probably going to be discontinuing her Bactrim, as it can also be causing her to have low counts. Instead, she'll get a monthly IV antibiotic dose. The only downside to this really, is that our clinic days once a month will be pretty long with IV chemo, followed by IV antibiotic, followed by a 3 hour IV Ig infusion. It really is a very small inconvenience if it keep her from getting all of these little viruses.
We both left the clinic feeling happy for some reason. There is something very comforting about having a plan and moving forward for us planners. Kate is feeling good too, so we are keeping on, keeping on! ;)

For a Limited Time

You can donate to The Leukemia and Lymphoma Society!!! Well okay, not really. You can always donate but I am only going to run one more marathon this year (I swear) so for a limited time you can donate through me. Clicking on THIS will get you directly to my webpage. From there all you need is a credit card and a desire to make a difference in the lives of others (laying it on kind of thick aren't I?). Seriously, Team in Training is hoping to cross the billion dollar fundraising mark this year and we need your help to do it! Thanks for considering the cause. We love you!

Home Again

Kate's counts today were better! She's technically still neutropenic (ANC of 450) but she no longer has a fever and is feeling good so they let us go. Also, her hemoglobin is 8.2 and appears to be on the rise as well. I was very grateful to see her doctor in the hospital and for him to say exactly what I wanted to hear. He told me that the drastic change in her counts can't necessarily be explained but that "it didn't mean anything bad". So good to hear!
Kate's chemo is on hold until we go to the clinic on Thursday. The counts should be high enough by then to restart the chemo and we'll be back to business as usual. This was just a little bump in the journey to a cure.

Hospital Update

Kate hasn't had a fever since last night but she's still getting antibiotics every 8 hours. She is definitely feeling better today, she's eating, doing crafts and our favorite smile is back. Not surprisingly, her blood counts didn't magically improve today but weren't drastically lower either. As long as we are talking numbers too, it seems that one of the lab values is wrong. Kate's hemoglobin taken at 5:30 pm last night was 7.6 and at 4:30 am today it was 8.6. Ummm, that's impossible - so we'll see what it is tomorrow and then we'll know which one was correct.
We were so happy to see that our nurse practitioner was on-call today! It was very nice to see the familiar face and to talk with somebody who knows Kate. After spending some time talking with her and the attending about Kate's counts, I feel less nervous. Apparently, the numbers can take such a drastic dive from a viral illness (even if it can't be explained physiologically) so we are just going to keep checking the numbers and see where we end up. She explained that a mechanism has been built into Kate's protocol for determining when/if they need to check out her bone marrow and do a biopsy. I feel better about that too. She's not there so we are doing good! They are holding her chemo until the counts rebound and will probably start her back on lower doses once we are discharged.
Hopefully her cultures won't grow anything and her numbers will bounce back. If so, we'll be able to go home in a day or so. As always, I'll keep you up to date. Thanks for your prayers!

Bump in the Road

Kate was admitted to the hospital today. She has been fighting something for the last 3 days but today brought a temperature of 101 and instead of celebrating Jason's birthday we went to the ER. I was sure that all we'd need was some antibiotics, some blood cultures and a follow-up on Monday but was surprised to see that all of her counts were low. Her ANC, the count that indicates the bodies ability to fight infection) was 230 (anything below 500 with fever is an automatic admission).
What is concerning me more right now is that her hemoglobin dropped from the high 10's 2 weeks ago to 7.6. She isn't bleeding and there hasn't been a change in her therapy so I don't know why that would be the case. I am anxious to talk to the heme/onc doctor in the morning and find out more. I am hoping that he'll tell me it happens all of the time and not to worry.
For now, Kate and I are kickin' it in the AFLAC cancer center and trying to make a "party" out of our stay. I'll keep you posted.

Miss Pixie

As you could probably tell from the last post, Kate's hair is really coming in. It is as soft as newborn hair and definitely has some wave to it. Her hair was beginning to look like permanent bed head so we thought we'd try to shape it and help it grow out looking a little bit cleaner.


Here is the final shot. Which in truth, isn't much different from the before shot except around the ears and back. The stylist is trying to grow out the top and work toward her cute bob cut again. We think she can pull off any hair style though! In our eyes she's been adorable bald and now with a pixie cut too!

Clinic Visit

Kate's clinic visit was a highly anticipated one for me this week. Since she'd been so on again/off again sick and puny I was worried about her counts. They are holding strong though. Her ANC is 690 and although they'd like it to be around 1500, it is above the neutropenia marker of 500. Her hemoglobin continues to hold it's place in the 10's so we are doing good!
Kate's NP and I had a good talk about her counts She told me that both practitioners and parents tend to pay so much attention to the numbers or "counts" that we sometimes forget that the kids are getting several forms of chemotherapy and that they can feel bad, especially if they have some sort of bug on top of it all. It was a good reassuring talk that this Mom needed. :)

Phew!

Sometimes I have a hard time posting about things as they are going on, in part because I have too much emotion surrounding the topic. Last Thursday Kate told me her tummy didn't feel good. She was also very pale and began complaining about her knee hurting even though she hadn't injured herself (bone pain is a big worry for leukemia kids and makes Moms very anxious about the very bad word - Relapse). The next morning Kate wouldn't eat (which is VERY unusual for her) and then she threw up later in the day. The highest her temp got was 100.0 but I just had this sinking feeling that about 5pm she'd spike a temp, so I called the clinic. The nurse said that they were seeing lots of viruses like this and not to worry too much but of course bring her in if her temperature reached 100.5. All weekend long Kate kept telling me how tired she was and took several naps at her own request. She'd perk up a bit after awaking but then feel punky again not long after getting up. I checked her temperature way too many times last weekend!

Let me say that Kate does have an amazing prognosis and the odds are definitely in her favor. I believe that she'll be cured, so it is quite unnerving that I get so anxious about the possibility of relapse. I think the combination of bone pain, lethargy, pallor and belly pain were just the right combination to get my mind whirling. There have been a few times like this in the last 10 months when my mind recalls stories of kids like Kate who relapsed and are now undergoing bone marrow transplant or in worse states.

So on Monday I called the clinic again because Kate came home from school saying that she was feeling sick. They told me for the second time, that as long as she didn't have a fever we could just keep watching her and we would check her counts on Thursday if she wasn't better. I know that it is normal to worry but each time I have a week like this I swear years are taken off of my life.

Well as the blog title implies, Kate is better! She began feeling better Tuesday evening in fact and is back to her old self. I am so grateful for answered prayers and the calming reassurances that I am given in times of need!

CHOA Benefit

Kate is dancing because she is the lucky winner of a $10,000 playhouse! Our friend Stephanie invited us to a Children's Healthcare of Atlanta fundraiser last weekend where we purchased a few raffle tickets. I am still in shock but we did in fact win the grandprize. Kate and Ava loved every minute of the event but especially have their hair done with sparkles and watching the whale sharks swim at eye level.

This week I spoke with the architectural firm who designed the playhouse and they confirmed that we'll be getting a 2 story castle in our backyard! Ummm, a castle? The girls are going to go absolutely crazy for it though. I think the construction will begin in another 3 weeks so perhaps we'll have them put some AC in for the summer. :)

Round 2 Month 2

Kate's blood counts were good today. Her ANC is 760 and her hemoglobin and hematocrit are holding strong. She seems to have caught another junky virus but isn't too affected by it. Boy are we lucky to have made it through the yucky winter without any hospitalizations!
Kate is feeling so good infact, that we started back to swim lessons and she's enjoying them. I love seeing her give me the thumbs up from the poolside!

Go Gym Dawgs!

Kate and I had an opportunity to go to the University of Georgia Women's Gymnastic home opener on Saturday evening. As you can see the won, beating out LSU pretty handily. These ladies have won the national championship for the last 3 years in a row and are amazing! The skill level was so high that it was like watching the Olympics up close. Their Mom, Shannan, and I watched every moment and couldn't get over their both their skill and rock hard bodies. Oh, the ship has SOOO sailed!

Kate and her twin friends, Taylor and McKenna had a great time and actually watched all of the meet! Kate commented that she wanted "to do that when I get bigger". Here is a picture of them after the meet. They actually wanted to go on the gym floor but had to settle for close enough for a photo-op because they weren't allowed any closer . The girls really wanted to shout out "good job" but the gymnasts were too busy giving interviews to hear.

Maybe someday Kate will in fact wear a bigger version of this leotard :) We are excited to make it to another meet this season. Go Georgia Gym Dawgs!

Disney Magic

As always Disney World was a magical place where we had days and days of fun! My parents joined us for nearly the entire trip as did some of our dearest friends the Hatches. (They flew from San Antonio to be there for the marathon and spend their vacation at Disney with us!) Jason's sister, Kristine, was also in town for a conference so we were able to see her for a few days too. Here is a list of just a few special moments on this trip.

1) Getting to eat in Cinderella's castle and meet Cinderella herself. We had a great time and felt so special! Thanks Anne!
2) Kate was big enough to ride on The Tower of Terror, Space Mountain and Expedition Everest. Woo-Hoo. She is a thrill seeker my friends - begging to go on the rides again and again!
3) Kate and Jackson were chosen to come up on stage with Belle and act out the Beauty and the Beast story. Kate was chip.
4) Seeing Minnie Mouse and having a little extra time to hug her.
5) The "Bird Show" at Animal Kingdom. She thought this was hilarious and would have gone back again had we had time.
6) Swimming at the pool at our resort. They had an awesome waterslide!
7) Meeting Daisy Duck. You almost NEVER see her.
8) Having Grandma and Papa Anderson with us. They are big Disney kids at heart.
9) Having the Hatch family with us. I think all of the kids cried themselves to sleep when we had to say goodbye.
10) Watching Jackson on stage when he was chosen to become a Jedi trainer. What a cool experience for him!

Disney Marathon and Victory Party

***For those of you that read our family blog too this has quite a bit of repeat information but we have a lot of people that check in on Kate and not our family. I felt compelled to share the victory party story there too. There are new pictures in this blog though.***

Kate was a trooper for the first 2 days at Disney and came out to cheer on the 1/2 marathoners on Saturday and then back on Sunday to cheer me and the other marathon runners. Both days she and the family had to get up at 5 am to be there as supporters too, so it wasn't an easy task.
I can speak for myself (and my friends that ran the 1/2) when I say that it was very motivational seeing her cheering on the sideline. I finished the marathon feeling very tired but super excited that I'd made it. My friends even handed Kate over to me and she ran the last 100 yards of the race with us. It felt like a once in a lifetime experience!

The Leukemia & Lymphoma Society's -Team in Training had an amazing "ball" (aka victory party) the night of the marathon. All 1,900 runners and family members were present for the celebration. Mickey, Minnie, Donald and Daisy were there for photo ops which was a huge plus in Kate's book! There was yummy food and dancing, dancing, dancing.

Quick story - After the race a guy came up to us to take our picture. He made mention of something about "my son". I quickly told him that she was my daughter, no big deal really but I didn't want Kate to feel bad. When we got to the party the same man came up to me and asked me if I remembered him. I actually didn't but he recounted the story and apologized again. He asked Kate if she'd go up and dance with him and she hopped right up to head to the dance floor. He told her not quite yet but he'd grab her later. Then he heads up to the stage where he begins to DJ the party. Turns out that he is the MC and travels all over the coutry to TNT races and DJ's the parties. He also photographs the race and puts a slide show together of those pics. Turns out that he took the BEST picture of us too. Here is a picture of the slide but we are working on getting the actual shot because it was so good.

Kate was itching to get to the dance floor so we headed out to get the party started. I so wish that I'd had my video camera to show you how that little girl was bouncing her hips and getting her groove on but a picture or two will have to suffice.Here is a picture of the DJ showing off his "Kate button" which TNT made for our team to wear during the race.

The DJ asked Kate if she was ready for a dance and then brought her up onto the stage. It was cracking me up to watch this girl shake it and dance in front of thousands of people without batting an eye. Kids are so funny - sometimes they can be shy in the presence of a single person and other times not mind an audience of a thousand! Here the DJ was teaching Kate the cabbage patch. Hilarious!

Kate danced nearly the entire 2 hours. Only pausing for a character photo-op and then was back on the dance floor. One of the neatest moments (and one that I'll remember my entire life) was when the entire dance floor formed a huge circle and everyone was taking turns dancing in the center (high school flashbacks anyone). Anyway, Kate hopped out in the middle and strutted her stuff for a second when the DJ said "Group Hug". Everyone closed in tightly and my friends and I were right next to Kate, then the purple and green confetti shower started. This really was like a scene in a movie. I look down at Kate and see that her angelic face, surrounded by bodies in looking upward with a smile pure happiness at the confetti coming down. The DJ was playing the last song of the night, Simply the Best by Tina Turner. We were all singing and hugging with tears streaming down our faces after we saw Kate's reaction to the moment. It was magical. I am sure that I haven't conveyed the moment as I felt it but hope you could catch a glimpse of the magic.

We left the evening on such a high that I think rivaled the marathon. It was very touching to see Kate having so much fun and living in the moment. My teammates were so wonderful with Kate and made her feel so special. We are going to miss them so much. Love you guys!

Maintenance Round 2

Kate had her last appointment on the 17th and we found out that her blood counts finally started trending up. Yea!!! She had an ANC of 850 with hemoglogin at 10.2, so it looks like we won't have to decrease her chemo doses if the counts keep coming up.

She had a lumbar puncture with intrathecal chemo and IV chemo too. She did feel pretty yucky after the visit though which is pretty par for the course on procedure days. My friend Whitney had brought us to our appointment from the hospital and picked us up too. Thank goodness for her and her quick reflexes or else Kate might not have thrown-up oustide of the car. I positively hate to see Kate sick to her stomach because I feel helpless. I imagine that I feel a lot like those passers-by and they stared as us on the side of the road.

This week has brought another round of steroids and with that some stomach pains but she is mostly feeling well now. She'll be happy to stop the steroids and get back to the next 3 weeks of usual meds.

This is her routine for the next 3 weeks:

6 Mercaptopurine every day

Zantac twice a day

Prednisone every day for a week

Bactrim DS twice a day 3 days a week

6 Methotrexate every Thursday

IV Vincristine in 3 weeks

Piano "Recital"

I have been asked by a few people to put a recent picture of Kate on the blog. It just so happens that I hadn't blogged her piano recital yet, so here you go! This picture is of our 3 little guys in yet another Christmas outfit. Notice Kate's cute little chick fuzz (as we like to call it) growing in. It's so soft! Also notice Ava's plastered "cheese face". We can't get her to stop chanting "cheese" when we take any pictures so all of them pretty much look like this. Too funny.

Since September, Kate has been taking piano lessons, alongside Jackson, and learned a Christmas song for the holiday. Our friend, Jen, teaches them lessons and so we didn't have an official recital planned. I decided that it would be fun for the kids to showcase their hardwork though, and we put together our own family recital. After church they were already dressed in their holiday best and so we had them each present their piece and videotaped their mad skills. :) It was so darn cute!

Here is Jackson focusing hard as he plays the First Noel.

And then came Kate as she dazzled us with O Come All Ye Faithful.

Me and my girls. Love them, love them, love them!!!

Can't Stop Thinking...

At out last clinic visit I had a seemingly benign encounter with our nurse practitioner (who we love). I was trying to see if next week, we could come a day later than our usual clinic day so that we could stay at Disney longer. She told me that it would be hard to arrange this because our upcoming visit included chemo and a procedure (lumbar puncture) and there are only a few procedure spots each day. She went on to say that there are several new patients who have Friday as their clinic day. Say no more - new patients get a LOT of procedures in the beginning of treatment. It wasn't a big deal for our logistics, we just bought some cheapy tickets back from Florida and will make our clinic visit just fine next Thursday.
What I have been thinking about is how sad I suddenly felt when she said that there were several "new patients". I imagined those shell shocked Moms and Dads and their sick kids. I imagined what they might have been doing when Kate was just diagnosed and how like us, they probably could never have imagined the road in front of them. I suddenly wanted to meet them, hug them and tell them that I know how they are feeling right now. I have thought about those families a lot for the last 2 days and have been thinking about how there are still more diagnosis to come. It has made me feel very sad too.
Is this morbid? I don't know - I think it is just a reality check for me. In the ER, I often have patients say, "But, I've always been healthy", when I give them a less than favorable diagnosis. To their statement I usually reply, "Everyone's healthy until they're not". Although I am a PA, this isn't something that I have thought of as it pertains to myself or loved ones but it is equally true there. Nobody knows what lies ahead for themselves, their friends or family. I have such an urge to give everyone I love a hug and call them to say how wonderful they are and how much they mean to me.
From this experience I hope to always remember how fleeting our time is and how we need to treasure those that touch our lives. I know I'll never be able to take good health for granted again!

Blood Counts

Miss Kate is doing great. She is happy, playful and has been enjoying all of her playdates this Christmas vacation. Today brought a clinic visit for more blood counts and we found that her ANC is still low - at 500 even. Her facial rash is back and a never-ending productive cough and cold are present so perhaps that accounts for the persistently low numbers.
Next Thursday we are going to have to fly back early from Disney for a lumbar puncture and chemo as we begin the next 3 month phase of mainenance. Jason and the other two will be braving the drive home. Sorry guys! :)
Send healthy thoughts our way please and pray for a fanastic, fever free, fun time! (How's that for alliteration!)