Kate's Journey

Cinic Visit Countdown - 6

2009-03-26T12:17:00.005-04:00

Kate has had a cold for months but over the last week her cough has been getting worse and worse. She has also been complaining quite a bit about headaches and stomach aches which is unusual for her. Last night she was up for 2 hours because she couldn't stop coughing and her chest hurt - probably from all of the coughing. This morning when we woke her up for her appointment I started to get nervous when she said that she felt terrible and started crying. I put my hand on her head and then a thermometer in her mouth which read 101. Bummer!

Today's clinic visit was supposed to include a lumbar puncture with intrathecal methotrexate, IVIg transfusion, Vincristine and IV Pentamadine. Since Kate awoke with a fever, vomiting and headache none of that happened. Instead, she got blood cultures drawn, a chest x-ray taken, a viral panel done (water squirted up her nose and sucked back out - yummy) and IV Rocephin (antibiotic) to cover her until the cultures come back. The chest x-ray looked ok and her ANC was 4000! Our nurse practitioner thinks that it is so high because her body is mounting a response to her illness. With all of the symptoms she has, I'm betting this is a virus. At least her ANC isn't below 500 which necessitates a 2 day hospital stay. Resting at home is better than the hospital any day!

In clinic they gave her Tylenol and Zofran and she started perking up even before we left. She's sleeping now and will hopefully just continue to feel better and that pesky fever will stay away! We'll go back next week for the lumbar puncture and the rest of the medications.

Make-a-Wish Send off Party

2009-03-18T10:45:00.005-04:00

Kate met with the Make-a-Wish volunteers over a year ago but due to Emmett's appearance we had to delay the trip - twice! Apparently you can't go on a cruise if you are over 20 weeks pregnant OR if you have a baby under 3 months.

I have learned that the Make-a-Wish organization is very different from state to state. In Georgia, they have volunteers who come to your home and meet with the child individually to learn about them and to help them come up with their wish. Our two volunteers were in their early 20's and do this wonderful thing out of the goodness of their hearts. In Utah, they have a magical Make-a-Wish center where the children go and take part in activities. They also have a specific "wish sponsor" who funds the child's wish whereas Kate's wish was granted by Georgia's Make-a-Wish foundation. I guess that each chapter is different but I'm not sure why. Regardless, this is another amazing organization and if you can support them please do!

Anyway, Kate thought long and hard about her wish and in the end chose a Disney Cruise. Her wish was granted in the form of a four day cruise to the Bahamas and Castaway Cay.

The wish volunteers came to our home a few days before the trip to give Kate a send off party. They brought a Disney themed cake and with it, lit a candle for each child to make their wish upon. It was very sweet to include Jackson and Ava in Kate's wish as they are almost as excited as she is! More to come on her big trip...

Clinic Visit Countdown - 7

2009-03-18T10:07:00.002-04:00

February 28th - Kate's visit went well today. She got the usual IV Vincristine, 3 hour IVIg transfusion and IV Pentamadine. For the last year our visits have taken about 6 hours each. Although we are used to them we welcome those days, like this one, when Kate sleeps for a good 4 hours of the visit. Today was especially wonderful because Emmett slept too and I got to snuggle up with Kate in her Barney chair (a purple transfusion chair) and take a little rest with my Kate. A very peaceful visit and we were grateful for it.

Kate's ANC came down to 1800 and that is great - almost where it needs to be. No changes were made to her medications so we'll see where those bloods counts are next visit. We are getting so close!

Ciinic Visit Countdown - 8

2009-03-18T09:53:00.002-04:00

January 29th Kate had another clinic visit. Her ANC was a crazy 3500 which is actually not so good. Her ANC is supposed to be around 1500 and they don't want it to be higher than that. For those of you that have been following the blog this must sound funny. I have been stressed in the past because her ANC is too low and now I have issue with it being too high. This isn't because I need something to worry about, it is just the way those fickle counts are the doctors are very specific about where the numbers need to be. It is so strange because her last ANC was really low (around 600). As usual, the discrepancies are being chalked up to a cold that she is fighting. If the ANC doesn't come down by the next visit then they'll adjust her chemo doses to force them in the right direction.

Kate loves going to clinic now (minus the finger poke). Anybody remember the show Cheers? When Norm would walk into the bar everyone would shout, Norm! Well, when Kate walks into the clinic she is greeted with boisterous chorus of Kate!, followed by a round of hugs. I actually feel bad for the other kids in the room who didn't get the same reception. Kate really loves the people that work in the clinic and we are so grateful for their ever present smiles, cheerful attitudes and love of Kate.

Kate Hansen Day

2009-01-24T22:41:00.003-05:00

The wonderful Chick-fil-A owners, Greg and Laurie Mapoles, hosted another Kate Hansen Day today. We were very happy with the response and hope that a great deal of money was raised for The Leukemia and Lymphoma Society. Thank you to all of our friends from Team-in-Training, Briarlake Elementary, church and our neighborhood that came out to support the event. Kate felt very good knowing that the proceeds were going to help find a cure for leukemia.

Monthy Dosing

2009-01-08T22:01:00.004-05:00

Kate's clinic day, for January, fell on the New Year holiday, so we were rescheduled for the 5th. This clinic day brought on another lumbar puncture, IVIg transfusion, Pentamadine and Vincristine. I never cease to be amazed by how well she does with the lumbar puncture. She is drugged, but definitely awake and while she feels the pokes she cooperates. That is a lot more than I can say for my patients!
Kate really looks forward to the alone time with me and so I was concerned about how she would feel about bringing Emmett along. Gratefully, Kate doesn't put Ava and Emmett in the same category, because she exclaimed, "I get to be with him the whole day" when I told her that I needed to bring Emmett to the hospital. Whereas she repeatedly asked me "when was somebody coming to get Ava" the last time I brought her. I didn't make that mistake again once it dawned on me that those hours in the clinic are all about Kate (as it should be)! She needed me to be focusing on her and thankfully Emmett cooperated with the plan.

We were a little surprised to see her counts lower this month. She had an ANC of 670 which is hovering right around the hospitalization number. We weren't sure if her constant cold was the reason or not but we just going to pray for no fevers. Kate just keeps on going no matter what and that gives us comfort. Until the 29th...

Kate's First Tooth

2009-01-06T13:14:00.003-05:00

Kate lost her first tooth on December 31st! A few days before that, we noticed that her two bottom teeth were poking out a bit and then realized that her permanent teeth had come in behind her baby teeth. So we encouraged her to wiggle those baby teeth and wiggle she did. She could hardly wait until today when she could go to school and share the big news with her class. (Apparently, losing a tooth is a VERY big thing in her 1st grade class. Ranks right up there with meeting Miley Cyrus I think.)

Unfortunately, the tooth fairy couldn't get with it and kept forgetting to pick up the tooth and deliver the cash. So, last night Kate followed her Dad's suggestion and wrote a note to the tooth fairy.It worked and she was all smiles when she woke up this morning!

Loving Life

2008-12-18T14:33:00.007-05:00

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

2008-10-15T13:32:00.005-04:00

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

2008-09-11T23:10:00.007-04:00

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

2008-08-14T08:08:00.002-04:00

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

2008-08-12T20:09:00.003-04:00

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

2008-07-28T09:49:00.004-04:00

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

2008-06-12T21:49:00.002-04:00

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

2008-06-03T10:09:00.002-04:00

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

2008-05-30T21:07:00.008-04:00

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

2008-05-21T15:45:00.004-04:00

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

2008-05-16T15:33:00.003-04:00

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

2008-04-23T15:42:00.003-04:00

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

2008-04-17T23:42:00.002-04:00

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

2008-04-16T16:54:00.002-04:00

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

2008-04-15T11:25:00.002-04:00

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

2008-04-13T18:19:00.002-04:00

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

2008-04-12T18:44:00.002-04:00

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...

2008-04-11T08:49:00.007-04:00

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

2008-04-11T00:29:00.003-04:00

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!

2008-04-09T22:40:00.002-04:00

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

2008-04-03T11:48:00.003-04:00

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

2008-03-31T19:20:00.001-04:00

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

2008-03-31T16:02:00.002-04:00

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

2008-03-30T16:12:00.003-04:00

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

2008-03-29T22:29:00.002-04:00

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

2008-03-17T12:08:00.007-04:00

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

2008-03-12T22:23:00.003-04:00

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!

2008-03-07T10:42:00.007-05:00

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

2008-03-02T19:52:00.002-05:00

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

2008-02-14T22:13:00.002-05:00

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!

2008-01-28T09:06:00.001-05:00

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

2008-01-27T16:46:00.000-05:00

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

2008-01-23T09:33:00.000-05:00

***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

2008-01-21T22:54:00.000-05:00

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"

2008-01-05T18:17:00.000-05:00

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...

2008-01-05T02:32:00.000-05:00

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

2008-01-03T16:47:00.000-05:00

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!)

Maintenance Month 3

2007-12-21T00:37:00.000-05:00

Kate went to the clinic today to begin month 3 of maintenance. She received her usual IV Vincristine and had her counts checked. Her ANC was even lower than last time at 510 so we are seriously praying that either her counts come up or she doesn't get a fever over Christmas! (Nobody wants to be in the hospital at Christmas.) Her platlets are lower too but the hemoglobin is great at 10.
Right now Kate has a cold and productive cough but she certainly doesn't seem sick - unless sick looks like a girl jumping on a trampoline for an hour a day! She continues to be happy and is very excited for Christmas.

Follow Up

2007-12-19T16:35:00.001-05:00

I just got the check last night from Kate Hansen Day at Chick-fil-A and thought I'd fill you in on the final total. Drum roll please...............

The profit was $1470 plus an additional $170 in cash on December 1st! We are immensely grateful to the owners, Greg and Laurie, for their generosity and kindness. What a wonderful thing they did for The Leukemia and Lymphoma Society on behalf of Kate. I can't wait to turn my check into the society!

Feeling Good

2007-12-12T08:04:00.000-05:00

So Kate is back to feeling well again (as you can see by this picture where she and Ava are playing reindeer). Gratefully her illness was short lived and wasn't accompanied by a fever or a trip to the ER! She's back to school this week and even feels good enough to go to gymnastics too.

Last night I previewed Jason's Christmas DVD and cried all through the segment on Kate. (It will be hard for anyone not to cry when they see it I think, so prepare yourself). As I watched her over the past year I couldn't help thinking what an amazing little girl she is. I am so lucky to have her in my life and have her goodness rub off on me just a little!

Yuckies

2007-12-09T10:49:00.000-05:00

Kate came home from school at 11 am on Friday saying that her tummy hurt and that she felt nauseous. After a Zofran (anti-nausea) and a 3 hour nap she seemed better so I chalked her tummy ache up to the 8 pills she had taken that morning.
Her appetite has markedly decreased over the last 2 days and she has continued to complain about her stomach hurting at various intervals. She mostly seems well though so we haven't paid it to much attention.
Then last night she came into our room saying that she was going to throw-up. Thank heavens that little girl knows to go downstairs to get a bowl because she sure needed it. We kept her in our bed with us and through out the night she was sick 3 different times.
A boy in Kate's class went home on Thursday and was later diagnosed with strep throat. She is also complaining of a sore throat but doesn't have a fever so we are going to hold off until the morning and then probably head into the clinic just in case.

Clinic Visit

2007-12-06T11:24:00.001-05:00

Kate had a clinic visit today and overall she is doing well. Her ANC is 680 which is still above that 500 mark of neutropenia but it is makes me nervous. She was nauseated last night (don't know why) and has a little cold so maybe those are contributing to the low counts.
I am drilling it into her head that she needs to wash her hands and keep them away from her face. We don't want to end up with a fever and hospitalization at this time of year for sure!

Kate Hansen Day

2007-12-01T23:42:00.001-05:00

Our local Chick-fil-A is owned by Greg and Laurie who are some wonderful people. Their marketing manager, Angela, is also an amazing lady who came up with the idea of a Kate Hansen Day at Chick-fil-A. They advertised for the day on their business marquee, on our elementary school marquee and distributed flyers to all of the local elementary schools. They put a donation bucket on the counter at the restauant and pleged to donate a perecentage of the total day's sales to The Leukemia and Lymphoma Society in honor of Kate Hansen. We were there from 12-2 and it was packed! The customers had to park in neighboring business parking lots because it was so busy.

It was neat for Kate to have so many friends stop by and show their support and amazing for us to again realize how many people truly love and support her. We had church friends, swim team friends, preschool friends, elementary school friends, TNT friends, neighborhood friends and teachers come out for the day. When Summer, one of Kate's little friends saw her, she ran up to Kate smiling and said, "It's your day Kate!". Kate just beamed back and said, "Yep".

We are so grateful to Greg, Laurie and Angela for putting this on and for being generous with their time and resources. I'll post the final donation amount as soon as I find out what it is. Yea for Kate Hansen Day!

Flashes of Hope

2007-11-27T22:13:00.000-05:00

Kate's portraits came back and they are great. These are a few of the shots that I like. He did a good job of catching several of her emotions that day. The photographs will forever remind me of her at the delayed intensification stage - bald from heavy chemo, bruised from low platelets, swollen cheeks from steroids, band-aid on finger from one of the hundreds of finger pokes for blood counts yet she is still smiling and is forever an angel!

I don't love the unflattering one of me in my workout clothes - kind of wish I'd know ahead of time about the portraits - but I do love it of US).

The photographer comes to the hospital once every 2 months and encouraged us to bring the other kids next time and get a family portrait done. I think we'll take him up on that!

Girly Stuff

2007-11-26T14:20:00.000-05:00

I took Kate along for a trip to the salon and she was in second heaven. That cute little girl loves to get her nails done but what woman doesn't really? She deviated from her usual pink shade and chose "Electric Blue" this time. Whoa, was it ever electric!

She especially like the flowers and sparkles that they added for a special touch. Can't wait until the next spa day!

GOAL!!!

2007-11-26T10:10:00.000-05:00

I wanted to let you all know that I reached my fundraising goal of $5,000. In fact, I am now at $5,200 and still going. It feels so good to be a part of such a wonderful organization and to feel like I can contribute in a small way. This of course couldn't have been done without your kind generosity and I can't thank you enough for supporting myself and Kate in this endeavor.

Today's Clinic Visit

2007-11-19T20:56:00.001-05:00

Today we headed to the clinic to begin our second month of maintenance. It was a breeze really with only blood counts and IV Vincristine on the docket. Of some interest, (perhaps only to me) was that Kate's ANC went from 5,000 4 days ago down to about 1000 today. The doctors have been telling us that when the kids are sick their counts can really plummet in a matter of days. Being the skeptic that I am, I had to see it first hand to believe it. In fact, when they told us to go to the ER 4 days ago I said "but her counts were nearly 3,500 one week ago". They told us that it didn't matter because after only a couple of days they could easily drop to neutropenic level (below 500) and then she'd have to be admitted. I am going to try and roll with it in the future and not be so frustrated with this whole "checking the counts" ER process because although that trip is a painful process it is in her best interest to be safe.
Today Kate is tons better with only a slight junky cough and runny nose. Her body has obviously been silently fighting that virus though with such a drastic change in numbers. Hopefully we are headed for a more germ free holiday season. Can you say hand sanitizer?

PS-Although Kate recovered quickly, keeping her in my bed was not such a good idea for MY health. I had a painful 3 days of nasty cold and headache thanks to little miss petri dish. Alas, the things we do for our kids...

Another Fever - November 15th

2007-11-19T20:31:00.001-05:00

I have FINALLY begun to listen to Kate and trust her instincts when it comes to her body. This morning I told her get dressed for school and when I went to check on her, I found her laying on the bathmat in her bathroom. She told me that she wasn't feeling well and that she had a headache. Uh-oh...fever, was my first thought but she only had a 99.3 temp and didn't seem too ill. Nevertheless, I did keep her home because I can be taught from previous experiences! We went to Jackson's school for the Thanksgiving lunch and over the course of the hour and 1/2 she began feeling worse.
We left and when I rechecked her temperature at home it was 102 degrees. Bummer. Well Double Bummer really because Jason left for 5 days yesterday so we were on our own today. Thanks to Angela and Beth, some quick responding friends, Jackson and Ava were taken care of so I could take Kate to the ER for the obligatory 5 hour visit including a chest x-ray, blood counts and IV antibiotics. We were eventually granted a pass home after Kate's ANC resulted an amazing 5,000. We were all stunned but it is very good because it means that her body was trying to fight the infection.
Boy was I grateful to be going home to my children and not sentenced to 48 hours of IV antibiotics. She is sleeping in my bed tonight so that I can keep an eye on her but isn't looking too bad - especially after Tylenol.

Blood Counts - November 8th

2007-11-19T17:16:00.000-05:00

Highest counts ever! ANC of 3540. A few hiccups as of late are a rash and CONSTANT cold like symptoms. She has had a cough and runny nose for what seems like weeks but her lungs are clear and she is fever free with a great ANC so they aren't too worried. As far as the rash goes, Kate has developed a perioral rash which has worsened over the last 2 weeks. I learned today that it is pretty common with kids on treatment and they are treating it with a topical steroid and fungal cream.
Because Thanksgiving falls on our next clinic day, Dr. Keller will bring us back in 11 days for IV chemo and counts. We're cruising along until then.

PostNote -The rash improved after just a couple of days but keeps trying to flare back up. Since we can't continue steroids on the face for any extended period of time we are using Aquaphor which is magical!

Halloween

2007-11-19T16:35:00.000-05:00

Kate came home from school and took a great nap so she was ready to hit the streets tonight. She nearly filled her bucket but I think would have been happy to stop sooner if Ava would have let her!

Kate and Ava got to ride around in style on the double jogging stroller and still Kate said that she was tired after like 10 houses. Is it only me, or does anybody else remember lugging around pillowcases and RUNNING from house to house for more loot until their parents forced them to come home?

Here are our 3 cute trick or treaters. It was difficult to pin our Ninja down for a picture but we managed to grab shot of a stoic faced Jackson.

TNT Halloween Party - October 30th

2007-11-19T15:31:00.000-05:00

Kate and the winner of the TNT Halloween Party costume contest. Well, she was the 3rd choice but still...

Kate and the kids got to dress up in their Halloween best for the TNT Halloween Party. Kate was asked to be the judge of the costume contest and roped me into helping her with that assignment. When asked what her favorite costume was she promptly replied, "mine". Okaaaay, so they asked her if she could pick another person who would she choose. Well, being the great little sister that she is, she chose her brother. Again, okaaaay - if you could choose someone that isn't related to you who would you choose? The clear winner - Another Minnie Mouse! So here is Kate with Whitney, her 3rd choice for the costume contest.

Here is Ava as a spunky little fairy. She LOVED Clifford and had a great time dancing around too.

October 30th - The Blues

2007-11-19T15:18:00.000-05:00

Poor little pumpkin is down in the dumps. I wonder if her expectations regarding going to back to school weren't quite met, or if we threw her in the deep end by going back full day or what but she is having an emotional go of it (and we aren't even on steroids).
Her first day back, on Friday, went great. Monday she wasn't too thrilled to go school though and today she asked if she could stay home. She said that school is too long and that she coudn't do it. We reassured her (or tried) and sent her off. A few hours later the school nurse called to say that Kate had been in her office for an hour and wasn't feeling well. I really think that she feeling ill emotionally, not physically though.
When we got home she took a nap and perked right up. I asked her why she was so "tired", as she kept saying. In Kate's words - "I'm tired of everyone asking me when my hair is going to grow back and stuff like that." I reply- "I see. How does that make you feel when they ask you questions like that"? Kate- "It makes me feel like I'm not normal...like I'm still sick." My jaw dropped. How can a 5 year old articulate herself so well? She is growing up too quickly.
I came to see that in Kate's eyes, going back to school meant that she wasn't sick anymore and that she was over all this leukemia business. She has also been out of school for 2 months and is now like the new kid back at school. She isn't sure of the routines, expectations of her or even who her friends are. I felt like crying with her but didn't. We'll figure this out.

Back to School - October 26th

2007-11-19T15:07:00.000-05:00

Kate headed back to school today since her counts were in a good place. (I think we would have waited until Monday if it wasn't class picture day though). She was so happy to be back with all of her friends and they are as darling as they can be with her.

In lieu of having the kids dress up in Halloween costumes the children were given the option to dress up as a character from a book and participate in a "Character Parade". Kate wanted to be Lola - from Charlie and Lola - and she convinced Jackson to dress up as Charlie (which was fine with him since he doubled as Charlie from Charlie and the Chocolate Factory).

I think that Kate feels pretty happy to be back to her "normal" routine.

October 25th - Recheck

2007-11-19T14:58:00.000-05:00

Kate's counts were high enough today (a whoping 900) to begin the Maintenance phase of chemotherapy. Her hemoglobin was very good at 10.1 and platlets were high at 554.
Today she received IV Vincristine, followed by a lumbar puncture with intrathecal Methotrexate. She continues to do better each time with the lumbar puncture. Today she barely made a peep and then snoozed for the last half hour while lying flat.
We will continue on this phase for the next 21 months and are ready for it. This is the medical regimen that we can expect from here on out.

1. IV chemotherapy once a month - Vincristine
2. Oral chemotherapy daily - 6-Mercaptopurine
3. Oral methotrexate once a week
4. Antibiotic 3 days each wee - Bactrim
5. Steroid pulse 5 days each month - Dexamethasone
6. Lumbar puncture only once every 3 months now with intrathecal Methotrexate

We are feeling like we are in a groove now and life is good!

Delayed

2007-10-18T10:17:00.000-04:00

We just got back from the clinic to find that Kate's counts weren't high enough to begin the Maintenance phase of treatment. Her ANC was only 330 but the monocytes were a lot higher at 26 indicating that her bone marrow is really starting to work. Translation, we are delayed beginning her phase until next Thursday (pending an ANC above 750).
I did learn that if we can begin Maintenance next week then July 4th, 2009 will be her last day of chemotherapy. That will give "Independence Day" a whole new meaning for us! It makes me tear up just to type that.

Monday Counts

2007-10-17T09:51:00.000-04:00

We had our follow up appointment in the clinic on Monday and things are looking better. Kate's hemoglobin was 8.6 so we didn't need a blood transfusion. Her platlets started to go up and there was evidence that her bone marrow had started to kick in as well (ANC of 230). So we had a short clinic visit and will head back on Thursday. If her ANC is 750 or greater we will be able to start the Maintenance phase of treatment. If not, she'll have another week off until the counts more fully recover.

Fundraising Update

2007-10-16T15:09:00.000-04:00

Woo-Hoo! Thanks to another few generous donations that I received today, my current fundraising total is $3,967 (which is 79% of my fundraising goal). To everyone who has donated - THANK YOU, THANK YOU, THANK YOU. There are many wonderful causes to support but I am touched that you all have reached out (or in, rather) and given so generously to The Leukemia and Lymphoma Society. I am encourage by this outpouring as is Kate. We Love You!

Camp Sunshine

2007-10-14T20:34:00.000-04:00

Whirlwind of fun - is the phrase that I would use to describe our family weekend. Boy did we have a great time at Camp Sunshine though! When we filled out our survey at the end of the weekend and answered the question, "What was your favorite activity", these were the kids answers. (Basically everything!) This weekend we -

1. Paddled in some boats

2. Played tennis

3. Spent some time at the archery range

4. Played a round of mini golf

5. Painted coasters as a family

6. Went for a night hike

7. Did some arts and crafts

8. Played on the playground

9. Partcipated in an awesome drum show

10. Went fishing and Kate even caught a fish - (Don't ask Jackson what he caught though.)

For those of you that don't know, Camp Sunshine is a camp for children with cancer and their families. Their T-shirt design from the summer says it all. A child's quote on the back of the shirt says, "It's like heaven and everybody should go...but you have to be special and have cancer." The directors and volunteers are an amazing group of people, many of whom are cancer survivors and have their own inspiring stories to share.

The group not only puts on amazing camps year round but they also host weekly and monthly activities for the children and their families. The Sunshine House is fortuitously about 3 miles from our home so we are going to try and make it to an activity each month. Our lives are enriched by the lives of those families we have already met there.

Thanks TNT!

2007-10-14T20:11:00.001-04:00

Our AWESOME TNT Disney Team came by last week with a wonderful surprise for Kate. Barb, Alley and Anne Ross showed up with a yummy ice cream cake and a bucket full of treats and hats for each one of the kids! Kate scored about 10 new hats and is having fun coordinating with each one of her outfits. Her favorite - the leopard Brittney-esque hat. My favorite - the pink Atlanta Braves cap.

They were so thoughtful to include all of the kids as well. Jackson has an awesome new ski hat and thinks that the cowboy hat was "totally radical".

Ava is in love with her "Boo" ghost socks and Kate's Minnie Mouse ball cap.

I am so lucky to be affiliated with this amazing group of people! They are a constant source of encouragement and support that I continue to draw from. I don't know how I'd be preparing for a marathon with them.

We're Home

2007-10-12T09:40:00.000-04:00

Feeling better, so we get to go home. It is surprising how grateful we can be to be home again! Although the hospital is a good place to receive medical care, it is not a good place to get sleep. I was too tired in the hospital to keep you up to date with the details but can now recap our experience over the last 5 days. Here is a quick review of the blood counts so you understand what I am talking about.
ANC = Neutrophils=Germ fighting cells
Hemoglobin (hgb) = Red Blood Cells
Platlets = Body's clotting ability
Bone marrow - Where these cells are made
The chemotherapy that Kate has been getting over the last 2 months has completely wiped out her counts - thus the need for a blood tranfusion last Thursday and platlet transfusion on Monday. After those 2 transfusions Kate's hgb was 11.8 and platlets were 147 which are nearly in the normal ranges. Her ANC was 70 which is very low as anything under 500 is considered immunocompromised. So this is why we ended up in the hospital when Kate developed a fever. The protocol is to give IV antibiotics until they grow the blood cultures and determine whether the fever is from a bacterial infection or a virus.
When we first arrived, our attending doctor told us that we would have to wait until after 48 hours of negative blood cultures and signs that her blood counts were recovering before we could be discharged. On Tuesday her ANC went down to 60 and hgb and platlets dropped too. On Wednesday the counts looked better with an ANC of 110 but still dropping hgb and platlets. We were hopeful that yesterday her counts would improve but they all dropped again and her ANC was 60, hgb 8.8 and platlets of 68. The fact that these counts were not increasing meant that her bone marrow hadn't recovered yet and wasn't producing the cells as needed. So, based on our conversation with the inpatient physician we were prepared to have to stay for at least another day or two.
We were so happy when the inpatient physician came in and told us that he had discussed the case with our regular oncologist, Dr. Keller, who thought that it would be ok if we went home despite the poor counts. Kate's fever was gone, she was looking great and we were just waiting to see improved numbers. His thought was that it could be a week or more before her counts improved and that we could do that at home. The one downside is that if she gets a fever we will be back in the hospital for another admission. Chant with me - no fever, high counts, no fever, high counts...
We will be going back to the clinic on Monday for repeat counts and to see if we will need any transfusions by then. For now, Kate is doing great. She is smiley, her spirits are up as usual and she has a lot more energy than you would expect for a girl with a hemoglobin of 8.8.
We are headed to Camp Sunshine Family Weekend today and tomorrow and are really looking forward to it. This is a camp for children with cancer and for their families. There is a physician on site and it is an hour outside of Atlanta so we should be safe should Kate develop any fever or other complication. We'll post some pictures when we get back!

First Admission

2007-10-10T01:13:00.000-04:00

Bummer. Not 2 hours after the last post Kate developed a fever! I swear that I jinxed us. After her platlet transfusion we left the hospital and she was really tired so she took a nap. After 3 hours she woke up and told me that her head hurt and felt "smooshy". I put my hand on her forhead and she was hot. Took the temperature and it was 101 degrees. Big time bummer. We knew that with her counts so low she was going to have to be admitted.
She is doing fine now but will have to stay in the hospital for a few days, until her blood cultures are negative and her blood counts start trending up. As always, please keep her in your prayers. I will post more tomorrow when I am less sleepy.

Platlets too!

2007-10-08T13:47:00.000-04:00

Not too surprised that Kate did end up needing platlets today. Her platlet count went down from 23 on Thursday to 14 today. She also had a little bleeding last night so they went ahead and transfused her. The platlets have a thick yellow appearance (like congealed movie popcorn butter - yummy) so we teased Kate that she tastes buttery and that we want to eat her up now.

Her ANC was also very low today at 60 but that is better than 0, which is what it was 4 days ago! This was to be roughest phase of treatment but she handled it remarkably well. We were so blessed that Kate never had a fever or required a hospitalization in this phase either. That is a pretty rare phenomenon apparently. Her reward -- another week off of chemo to recover those counts. Yea!!!

We also had a fun surprise at the clinic today. A professional group comes once a month and does professional portraits of the kids for free. The organization is aptly titled, "Flashes of Hope". A make-up artist put some sparkly powder of Kate's face, some shiny lip gloss on those lips and Kate flashed her pearly whites for the camera. The proofs will come back in 5 weeks and I can't wait to see them. Don't worry, you know I'll blog a picture or two once they arrive.

Next Thursday Kate will have a lumbar puncture, IV chemo and will begin the Maintance phase of chemotherapy. This is the last and longest phase of the treatment. It promises to be the easiest too. I can't believe that we are nearly 6 months into the treatment already. The sure hope that the next 21 months will fly by too!

I Did it for Kate!

2007-10-07T15:14:00.000-04:00

Mitchell, a young man that attends our church, decided after he saw Jackson's shaved head that the other youth in our church should show their support for Kate by shaving their heads. I don't think that he had tons on support in this matter, but he was persistent in wanting to do it anyway. So, the other night he came to our house and had Kate help shave his head. It was such a sweet gesture of support from a thoughtful teenager. (and you thought that teenager and thoughtful were oxymorons! )

Mitchell made this T-shirt for the event and planned to wear it to school the next day for the unveiling of his do.

This story is one of many that I will try to remember and post for you all to hear. There are dozens of similar ones from our community as they continue to reach out to Kate and our entire family. We are so very blessed!

Fall Festival Scare

2007-10-06T22:45:00.001-04:00

Today was Jackson and Kate's elementary school's Fall Festival. It is definitley one of the highlights of the year for all of my kids! Probably because we start preparing for the event in the summer time and they hear me talking about and planning for it for months. Kate has been at home with me as well, so she's gotten an extra dose of running errands, doing tasks like bagging prizes, and meetings with sub-committee chairs.

Unfortunately, Kate didn't get to really enjoy the festival this year though. After just an hour, Kate began complaining to Jason and Gramma H. about her stomach hurting and then asked if they could take her home. When they found me and told me that, I noticed that she had petechiae all her face, neck and torso. (Petechia are small red/purple spots that are tiny vessel hemorrhages. These show up when platlets are very low.) After a while Kate was doubled over and started to worry us. I was having visions of driving her to the ER for evaluation and then I began worrying about what could be causing this pain. Jason, Gramma, Kate and Ava left the festival and I got on the phone with the on-call Heme/Onc doctor to look for some guidance as to what we should do. Because she didn't have a fever, a rigid abdomen, vomiting or bleeding from another site, they recommended giving her some narcotic pain medicine and checking back with them. Gratefully, she took a 3+ hour nap and woke up feeling much better.

This picture is the only picture I took that included Kate before she started hurting. They were all participating in a cake walk in and Jackson won the cake! I felt so bad for Kate that she wasn't able to really enjoy the Fall Festival that she had so been looking forward to. Gramma later told me that Kate was really missing me as well too, so she and I hung out last night and caught up after a busy 2 days. She is doing fine now and hopefully will be on an upward swing. When we later talked to Dr. Keller he suspected that her abdominal pain and general crappy feeling was basically because she was in the roughest part of her chemotherapy treatment.

The Chick-fil-A marketing manager had a special surprise for Kate. She gave her a HUGE cow and Chick-Fil-A meals for a year! Kate has been carrying (or dragging) the cow around with her constantly since yesterday. In fact, she is currently napping with him.

I really wanted a cute shot of our 3 little pumpkins but Ava wasn't having it and Kate didn't like the scratchy straw. So, this is our one and only shot. We hope that next year's Fall Festival finds Kate a much happier, healthier little girl!

Got Blood?

2007-10-04T20:33:00.000-04:00

We were not surprised at all to find that Kate needed a blood transfusion on Thursday. Her hemoglobin went down from about 11 to 7 in a week! She looked very pale to us, her heart rate was up and her energy level was going down. Her platlets were also very low at 23 (normal is 150-450). They are going to bring Kate back on Monday for blood counts and if they are lower she will get a platlet transfusion as well. Wednesday was the last day of her 2 very rough weeks of chemo and she has the week off from all chemo so Dr. Keller thinks that the counts will start recovering now. This picture is of Kate just as the treatment was beginning. Due to the hospital lighting I couldn't seem to capture her pre and post coloring but it was markedly different.

Kate spent the 6 plus hours in the clinic watching some shows, doing her school work and as you saw from the first picture taking some rides on her IV pole!

She also spent some time sleeping. Note the glazed look in those eyes.

When Kate was all done getting the blood she looked better immediately. This is her after the bag had transfused. She had color in her cheeks and seemed more like her perky self. We'll see about needing platlet transfusions of Monday.

Hanging in There

2007-09-30T17:35:00.000-04:00

Kate has made it through the difficult part of the treatment without any glitches so far! For the last 2 weeks I have had to give her a shot a day for 4 days and then have 3 days of rest. Tonight was our last shot and she is particularly happy about that! All in all she did very well with the shots. Her only request was, "can I scream when you give me the shot." Hey, I'm used to children screaming in the ER so it didn't bother me one bit and it helped her to get through the pain. Our routine - that little trooper would sit up on my bathroom counter and choose which arm or leg she wanted the shot in. We'd clean the area, inject the cytarabine into the site and apply a Hello Kitty band aid. After a few more minutes of crying we'd head downstairs to the kitchen for the very important post procedure treat! :)

Kate's visit to the clinic last week was pretty benign. Her blood counts were trending downward (as expected) but weren't too bad. It is hard to believe that she may need blood and platelet transfusions this Thursday but the doctor is pretty confident that she will. I guess these combined medications just wipe out the bone marrow. We are so grateful that Kate has remained healthy despite being in the most difficult phase AND having had a sister at home with croup and conjunctivitis! Those prayers have got to be helping us out.

Just a picture of our 2 squinty eyed cuties!

Our 3 Cue Balls

2007-09-26T14:06:00.000-04:00

For the sake of those who don't read our family blog I thought I should post a picture of Jackson's latest transformation. Since Kate was diagnosed the kids have planned on becoming "The 3 Baldies". After we cut off the rest of Kate's hair Jackson was ready to let his go too. We wanted to be able to capture the moment and all be present as a family so unfortunately he has had to wait a week for his big moment. Well, last night he got his wish and what a cute bald head he has!

Every few hours Jackson will giggle and rub his head. Then he'll say, "I forgot I was bald". What a sweet gesture of support Jackson has shown to his sister. We are unbelievably lucky to have our oldest son be such a kind, loving and sensitive child. He is everything that I ever wanted in an older brother.

Month 2 - Delayed Intensification

2007-09-21T14:17:00.000-04:00

This Thursday was the beginning of Kate's second month of delayed intensification. We arrived at 8am for blood counts and found that they were good enough to proceed with chemo. This was a good thing since my Mom was here and we had already geared up for the long day.

Kate did very well with the lumbar puncture and intrathecal chemotherapy this time. She actually told me that she was tired and fell asleep BEFORE they even gave her the "sleepy" medicine. After the procedure, she was grumpy until she saw the oreos that I had brought. As you can see in this picture, she was all smiles after that.

Kate received Vincristine and Cytarabine through her port, followed by a longer infusion of Cytoxan. This drug can be toxic to the kidneys and bladder so after the infusion she had to receive several more hours of IV fluid. That poor girl must have gone to the bathroom a dozen times!

In total, we were at the hospital for about 8 1/2 hours but the time actually passed pretty quickly. Kate watched Curious George, worked on some homework that her teacher had sent home, did a few crafts and took a little snooze, too. She was most pleased by Daddy's visit complete with her favorite turkey and cheese roll-ups.

The child life specialist, Christy, had a fun activity planned at the end of the day. She had the kids create their own feeling tree. She asked them what colors they associated with being happy, sad and mad. Kate then did a leaf rubbing with red for mad, blue for happy and green for sad. Christy asked them to tell her something that gave them each emotion. It was a pretty neat exercise and Kate seemed to really get into it. She also is still drawing Vincas and we've tacked these latest works of art on our bulletin board at home.

Bald is BEAUTIFUL!

2007-09-18T09:23:00.001-04:00

The Comb-Over Is Not!!!

Over the course of 5 days Kate began to seriously shed her beautiful locks. She would wake up with her pillow and shirt covered and then throughout the day she would pull handfuls out at a time. Yesterday her hair was rivaling the worst-comb over you've ever seen! I think that she was sick of clumps falling in her food too, because she asked us if we could cut the rest off. With a bit of sadness on my part, we obliged and headed off to her hairdresser. As you can tell from the picture below, she wasn't at all traumatized by the experience though.

Kate smiled from the minute we arrived at the salon and hasn't stopped yet. I am thrilled that she looks at this phase as a fun adventure and isn't upset by the change in her appearance.
Grandma Anderson and I both had to try and hide the tears in our eyes during the process because we didn't want to let on that it affected us more than Kate! Although I've known that this was coming, it was something different when I actually had to face it.

Kate's hairdresser was as wonderful as always. She and Kate giggled through the whole thing and at the end she wouldn't even let us pay her for her time. I am again reminded of how genuinely kind and supportive our community is.

Only she and Demi Moore can make bald look good! Kate is very proud of her head, pointing the change out to everyone that she sees. Her head is pretty sensitive right now so we are trying to find soft hats that don't bother her, in case she wants to wear them sometime. Who knows though, she may never care to cover up that scalp!

Fun Visit

2007-09-17T22:56:00.001-04:00

Everyone knows that Kate is quite a little social butterfly and I think that being away from her friends was starting to make her somewhat sad. As I began thinking about how to manage visits with her friends and keeping her healthy, I received a perfectly timed email from Weatherly, Kate's friend Olivia's Mom.

So we set up an after school visit at our house and Kate and Olivia played for an hour or so. Although Kate got a little tired by the end she told me that she can't wait to see Olivia again. Those two girls are darling together (and silly)!

The Winner is......ME!

2007-09-12T17:42:00.000-04:00

Well, not really me - more like The Leukemia and Lymphoma Society but I did get a $100 fundraising credit for being the one to raise the most online dollars in one week!

My total raised to date is $1,433. My goal is a whopping $5,000 though, so if you haven't donated yet, please consider it. Just follow the TNT link on the margin, it is really SO EASY.

Thank you so much to everyone who did make online donations to the Leukemia and Lymphoma Society last week. I feel like in addition to helping Kate with her journey through cancer treatment, I am helping another person who will one day be diagnosed.

Food Glorious Food!

2007-09-11T08:07:00.000-04:00

Wow, those steroids have finally kicked in full force. Kate has had a one track mind for the last 3 days and I can only say that I am happy we just have 2 days of the steroids to go. I am not exaggerating when I say that each and every thought she has is somehow related to food. Her daily requests include hamburgers, eggs, bread, chocolate and pasta about 10 times! It is only 8am and Kate has already had 2 bowls of cereal ,2 eggs and just requested a bowl of pasta! Let me tell you, she could eat a pro-football player under the table right now. (She is definitely out eating every one of us.)

Kate's body fat is redistributing to her face and belly again and we can tell that she isn't feeling as well, preferring to sit on the couch and snuggle to doing anything else. Another significant side effect of the steroids is "roid rage". The steroids make Kate more irritable and impatient but according to our doctor her symptoms are relatively mild. Some kids are down right mean - hitting, biting, screaming and even require medication because they are dangerous.

This go around Jason and I have perspective on our side, though. We know that in another week, we'll have our sunny Kate back and the food cravings will have disappeared as fast as they came. Thank heaven!

A Balancing Act

2007-09-07T13:34:00.000-04:00

Today I received a call from Jackson's teacher who said that he was feeling pretty sad and that he wanted to talk to me. She told me that he's been like this for a few days but that he seemed worse today. Jackson got on the phone and spoke with a quivering voice about how he was worried about Kate. I was totally taken aback. He hadn't expressed any of these concerns to Jason or I in the last few rough days but he obviously had been internally conflicted. I told him that Kate was doing ok, explained again why we were keeping her home but that must not have soothed him enough because he asked me to put her on the phone! (That made me smile, actually). Although he seemed better by the time we got off the phone, I now am pondering how I can better help him adjust when Kate gets sick. We have very open and frank discussions in our house and I thought that we put it all out on the table.

In my well meaning way, I have scheduled activities for Jackson for the last 3 days. On Wednesday, he went to play at Noah's house after school and then they went to soccer together. Thursday he had another play date with Sammy and had a great time. Last night, Sammy's dad brought him to cubscouts and said that everything went well. I didn't want Jackson to feel stuck at home with us, because Kate was sick, but we usually go to all of our activities together as a family. Maybe going to these activities without us made him feel like something must be very wrong. I don't know. Still wading through these unknown waters as I come upon them. Any ideas?

2 down - 6 to go

2007-09-06T16:53:00.000-04:00

I wanted to post a current picture of Kate so you could see that she looks great despite the treatment. Sitting and watching TV does seem to be one of her favorite things to do as of late, but who can blame her. Ava has no excuse. She's just a couch potato! :)

Thank heavens, today was a good clinic day. I don't think that Kate (or I for that matter) could have gracefully handled another difficult day. (Wait, that implies that I handled the others gracefully. You know what I mean. :)) In fact, today was so good that I think someone in the clinic must have access to my blog and has read my last 2 frustrated entries. Today we were greeted by the child life specialist (a person who's sole responsibility is to ensure the child's comfort and ease - we love Christy!) who chatted with Kate for a while about nothing in particular. She brought fun toys in with her to distract Kate while they accessed her port and then returned later with about 4 things from the prize box for Kate. Coincidence? I think not. Whatever the impetus, I don't care. I am thrilled that our nurse was wonderful with Kate today and that we made it through the process without any tears. As if that wasn't enough, Kate's port - the one that was clotted in the ER - worked today without any difficulty! Happy Day!

Kate is very tired though and her counts are, "in the toilet" as they say. Her ANC is now 100, which is basically nothing and so she's considered to be immunocompromised. Her red blood cells and platlets are hanging in there so she doesn't have to get any transfusions yet. They say that in another month it is likely that she'll need them though. Also, she has developed oral thrush but that is easily treated with Nystatin liquid.

In other good news, Kate's bone pain has improved and is controlled with Tylenol alone so we are super happy about that. We also have only 1 more week of steroids to go. Yea!

Update

2007-09-05T14:11:00.000-04:00

Kate is feeling better but is tired. She is on her second nap today and her pain is controlled with Tylenol alone. I just spoke with Kate's NP at the clinic and she said that Kate's blood counts show her to be neutropenic - translation her 3,000 ANC last week is 120 today. It is, of course, expected but it means she's at risk for infections. (Side note - the ER doctors told me that her blood counts were "normal". Ummm...not so much. I should have asked to see a copy of them.)

The NP also said that Kate's "achiness" (I guess we all have different definitions for ache) can happen with these high doses of steroids and chemo. Wish I'd known that yesterday. Because she's neutropenic though and may not mount a good fever response, they want to be conservative and see her if the aching is severe or anything seems unusual for Kate. We go to the clinic tomorrow for chemo and they'll check her out then. That is comforting to me.
Thanks for your calls, visits and emails, we are doing better today.

I LOVE our Doctor. I HATE the ER!!!!

2007-09-05T08:58:00.000-04:00

I wish that I had a happier medical story to share after our last clinic visit but alas we had another encounter with our less than perfect medical care system. I know that there are many good stories to share and I promise that I will when they happen. This entry, however, is about our less than satisfying visit to the ER last night.
Yesterday morning (and for the last week) Kate complained that she wasn't feeling well. She asked to stay home from school and her Dad let her. About 10 am Kate really seemed fine so I encouraged her to go to school (I know, I know, bad Mommy - but you weren't there. Kate didn't seem ill at all.) I told her teacher to call me if she was complaining or not feeling well but she said that Kate did just fine all afternoon. After I picked Kate up she began telling me about how her back was hurting. Shortly thereafter she was fussing about both of her legs too. I thought that maybe she needed to rest and laid her on the couch to watch a show. Within an hour she came upstairs, crying pitifully, laid on my bed and told me she was getting worse. She could only take a step or two before she'd fall down because everything hurt so much. I had no idea what the problem could be. Although she felt warm, she didn't have a fever. Kate was not complaining of any urinary symptoms and she hadn't fallen down. I tried some Motrin but it didn't help at all. At one point when was crying pitifully into her pillow, she finally asked me to take her to the hospital. That was enough to scare me, so I called the on-call doctor (who has never met us) for some help. I had wanted him to give me some thoughts as to what the problem could be (ie-is this a normal side effect of the new chemo or bone pain. Should I give her some Tylenol with codeine and see if it helps or is there a potentially serious problem that I'm unaware of) but when he heard Kate crying in the backround he recommended that we come in.
Once to the ER, at 6:30pm, we were put into a room very quickly. They bring their cancer patients back immediately - don't necessarily do anything forever...but we were in a room at least. Our first nurse tried twice to access Kate's port and failed. Our second nurse tried again but wasn't getting any blood flow. They tried heparin and finally called down the nurses from the cancer floor. The cancer center nurses took that access out and poked her again. Mind you, nurse #2 had promised Kate that if she could cooperate she wouldn't be poked in the arm. What is that old saying, "Don't make promises that you can't keep." So, Kate cooperated through the tears and still after a 3rd poke they couldn't get any blood flow. Kate ended up having to get a blood draw from her hand anyway! That entire process took over 5 hours. I work in an ER and I can say without a doubt, that is ridiculous!
Kate had had it. By this point she was wimpering again, asking me to take her home and put her in her own bed. Meanwhile, we've been in the ER for over 5 hours. We have seen a resident once who did a quick exam and said she'd be back. No mention as to possible causes of this pain or what tests they'd be running. After 5 1/2 hours a radiology tech comes in to take us to x-ray. What were they looking for, I have no idea because it hadn't been discussed. Kate's pain had lessened on arrival but began returning a few hours later so they gave her Lortab. That seemed to do the trick. About 6 hours into the visit the resident pops her head in the room and asks if we'll be ok taking Kate home. I about lost it. It was after midnight, Kate had been poked ad nauseum, x-rayed and nobody had given us any results or thoughts as to what the problem was, yet we were being asked if we were ready to go. Nurse #3 ,who'd just begun her shift, was in the room during the resident's pop-in. She briefly asked me to tell her what had happened since arrival. I told her how I felt and she got an attending to finally tell us what was going on. In the end, they don't know why Kate was hurting so much so we are going to talk to her regular doctor tomorrow. We got home by 1 am and put a wiped Kate to bed.
This is why cancer patients don't go to the ER and just endure the long night until the clinic opens in the morning. Perhaps I should have just given her the narcotic at home!

I Can Grovel with the Best!

2007-09-04T15:35:00.001-04:00

So, you'll all be getting an "official" letter from TNT shortly, requesting donations for the Leukemia and Lymphoma Society but I decided to put an early plug in for the cause. (Can't say that it was all that altruistic though. My early plug was partly spurred by an email I just received promising a $100 credit for the person who raises the most online dollars this week).
Part of my responsibility in running the Disney marathon is raising $5,000 for leukemia/lymphoma research. It is really the least that I can do but need your support to achieve this goal. I have already had one brave friend step up and pledge online and it really is quite easy. All you have to do is click on the link in the margin that says "Click Here to Make a Donation for the Marathon" or click here. Thanks for your support!

A Lesson in Sensitivity?

2007-08-31T11:02:00.000-04:00

So this Thursday was not a great one for Kate. She is having a lot more tummy aches and nausea with this round of treatment and wasn't thrilled about going to the clinic twice in 4 days for chemo. On Monday she had to go to the clinic for two IM (shots in the thigh) chemo doses. Then yesterday, she went back for 2 IV chemo infusions. (It is no wonder she isn't feeling as well this round). I also think the steroids are altering her personality a bit and that she is kind of sick of the process.
I have to tell a story for a second so that I can vent. Kate is kind of sensitive about her port site anyway but yesterday it seemed to bother her even if nobody was touching it. She complained to me about it hurting her while we in the waiting room but it looked fine to me. It really hurt her when they were accessing the port and she cried. They had a hard time getting good blood flow but when they did things seemed to go smoothly during the treatment. There was no swelling, redness or bruising only pain. When it was time to deaccess Kate, she complained that it hurt again and really started crying. The site continued to bleed for a few minutes afterward and it required the nurse to hold gentle pressure. The nurse really was being gentle but Kate was getting all worked up and began crying harder. The kind of crying where I can't get her to look at me and she goes to another place.
Finally when it was all done, the nurse asked Kate if there was anything that she could do to make her feel better. Kate asked if she could choose something from the prize box and the nurse said no, that those were only if you'd had a procedure. What?! Did she not just ask my child if there was anything she could do? Give the steroid pumped child, post chemo treatment, a freakin' toy from the prize box! I left with a crying Kate and Ava on my hip. The day did get better though. Kate took a 3 hour nap and woke up in better spirits. I just hate to see her go through days like this!

Latest Medications

2007-08-25T21:55:00.000-04:00

So the medications have changed quite a bit for this phase so I thought I'd give you the new scoop. Kate is getting 2 different chemotherapy drugs during this phase which, per Dr. Keller, will completely wipe out her ANC. He fully expects to see the numbers below 100 in the next few weeks. We are still praying for good counts and no fevers though! If we are extremely lucky we'll stay out of the hospital. Here is the new list...

Dexamethasone (that pesky steroid) by mouth twice a day for the next 21 days.
Bactrim by mouth twice a day on Mon, Tue, Wed.
Zantac by mouth twice a day.
Vincristine (chemo) IV once a week
Doxorubicin (chemo) IV once a week
PEG Asparaginase (chemo) 2 shots once a month for 2 months
Cyclophosphamide (chemo) IV in 3 weeks
Methotrexate (intrathecal chemo) on day 1 and 29

PS - I'm still using my pill organizer. It is a life saver!

She's Famous!

2007-08-23T12:29:00.000-04:00

Today began early for us as we headed to the hospital to begin the Delayed Intensification phase of Kate's chemotherapy. Shortly after checking in, the staff asked Kate if she would please talk on the radio. We weren't aware but The Neal Boortz Show (a nationally syndicated talk radio program) was at the AFLAC cancer center today broadcasting live. They were holding their WSB Care-a-Thon to raise money for the center. Although Kate was a little nervous at first she really did a great job and had fun too. I didn't have any idea how many people listened to that program until I started getting all of the emails and phone calls from friends who had heard her on the radio. Jason's lab tech, Michael, heard her and gratefully called Jason so he even listened as he was heading into work. Kind of a fun opportunity for Kate.

As far as the treatement goes, Kate did the best she's ever done with all of the pokes and prods! She braved the finger poke, eyes clenched shut and teeth gritted but without tears. Kate received IV chemo, Vincristine, and a new chemo drug called Doxorubicin. That Kool-Aid red medicine can make the kids nauseous, so she also had some Zofran, an anti-nausea medicine. Although she wasn't psyched about the lumbar puncture with intrathecal Methotrexate she managed it well and for the first time ever we spent the 30 minutes after the procedure (where they force a drugged child to remain in a flat position to avoid post tap headache) without any fights. Maybe she was extra tired, perhaps they gave her more medication but whatever it was I hope that we duplicate that next time. After the LP, Kate laid on her back and even slept for part of the time. It was heaven. When it was all over Kate had had it though (understandably so). Her patience was gone and she was a little grumpy. Neal and Belinda had wanted her to talk after her treatment she wasn't up for it and we didn't push our luck. Here are a few more shots of her moment in the spotlight.

Kate and Belinda Skelton. Kate wasn't shy at all and hopped right up on Belinda's lap when she asked Kate to. They totally bonded. Belinda is trying to hook her 5 year old boy up with Kate.

Kate really got into it by the end. She put on the headphones and was moving the microphones all around. At one point, Neal got up and she took his seat!

Plugging Along

2007-08-16T21:38:00.000-04:00

Kate had her last appointment in the phase of Interim Maintenance today. Her blood counts were good with an ANC of 1300 and hemoglobin of 12. Her cough finally seems to be slowing down and she really feels quite well.
Next Thursday begins the next heavy duty phase of chemotherapy called delayed intensification. Doesn't the name alone make you cringe? It makes me tense up for sure! This phase will last for 2 months. So next week we will kick start things with a rousing lumbar puncture with intrathecal methotrexate and IV chemotherapy. Then I'll basically let Kate do whatever she wants for the rest of the day. :) She will definitely have earned it!

TNT Kick-Off

2007-08-16T00:55:00.000-04:00

Last night Kate and I went to my first TNT (Team in Training) meeting for the Disney Marathon. Kate as the team honored hero and I as a lowly runner. It is hard to come up with the words to describe how amazing the night was. A cancer survivor spoke to us, truly speaking from the heart about how research and new medications saved his life. I am sure that every person in the room was moved by his personal story and the realization that every blood cancer patient has their own story too.

The TNT staff asked me to bring Kate to the meeting so that our team could meet her and she loved every minute of our 2 and 1/2 hours there. The coach, coaching assistant, mentor and team captain were so amazing with Kate. They dressed up in Disney costumes, played games with her and generally spent the entire evening getting to know her. Barb (Tinkerbell) also gave her a "magic wand" and taught her how to use it properly to ensure the her wishes would come true. (Word has it that Barb is making sure that Kate's wish for her own Minnie Mouse dress comes true). Seeing Kate surrounded by complete strangers who were all pulling for her and for so many others with leukemia brought tears to my eyes.

If I was excited about the race before, I am ecstatic now. In other news, I have found out that if anyone else wants to run the marathon or 1/2 marathon at Disney they can train with any local TNT group and run with our team on race day! Would that be a blast?!!!! I'll take as many of you as I can get. I'll also take your donations but don't worry I'll be hitting you up for them shortly. :)

Kate and Tinkerbell, (Barb) my coaching assistant. They have already totally hit it off.

All of the crazy Disney Crew! I think

that it will be nearly impossible NOT to have fun with these ladies.

Kate was totally spoiled with a massage. Cutest thing in the world to see. Who knew a 5 year old could appreciate something so luxurious!

Kate's Port

2007-08-14T15:27:00.000-04:00

Kate likes to tell everyone about her port. She'll go up to complete strangers and ask them if they want to feel her port. It is kind of a sensitive spot and she tells people to "be gentle". Still, many of our friends and family don't know what exactly the port is. Here are a few pictures that help I think.

The one on the left was taken a couple of weeks ago when they were looking for pneumonia. The port is the round circle on the upper right chest wall. You can notice the white tubing going up and over to the left. It enters directly into the heart.

The picture of Kate on the right shows a surgical scar above a little bluish bubble. That bubble is the round port. This is where they put a needle through each week for blood draws and chemotherapy.
If you see Kate, you can ask her to feel the port (if she doesn't ask you first). It is pretty cool.

Our Kindergartner

2007-08-13T21:15:00.000-04:00

So I can't believe it, but our little Katydid started kindergarten today! She hopped out of bed and couldn't stop talking about how she wanted to meet her teacher, Mrs. Law (though she's met her dozens of other times already). She was equally excited about her new Hello Kitty backpack and lunch box (thank you Grandma Hansen).

Kate was so happy to see that she had several friends in her class. She knows Riley, Andie, Rachel, Lydia and a few more that I can't remember right now.

Her highlights of the day were eating in the cafeteria, seeing Jackson in the hallway and playing at center time. I hope that this is a good year full of positive experiences for Kate.

So good, so far.

2007-07-30T19:00:00.000-04:00

So, Kate is doing great so far. She is still coughing but doesn't seem any worse for the wear. After church yesterday and a nap she felt up for a little hike. We went to Ousel Falls with Grandma, Jackson and Ava. We definitely took our time on the hike and the kids enjoyed exploring their surroundings. Grandma and I were happy not to be out of breath along the way. What a great way to spend a Sunday afternoon!

Trailhead

The Kids

Group Shot at the Falls

Nervous Nellie

2007-07-26T13:11:00.001-04:00

Kate has had a productive cough and runny nose for the last 2 weeks. I have put my hand on her forehead countless times and checked her temperature a bit too much as well. I can't help it. I don't know if it is because we are going out of town but I have a sinking feeling in my stomach and I am worried. Just before I went to New Hampshire and Kate was sick, I had a similar feeling in my gut that made me think I shouldn't go. I went anyway and we ended up at Dartmouth for 5 days and later a life flight back home. So...is this feeling a legitimate warning or is it because I am nervous to travel with her for fear that she'll worsen and that we'll be stuck in another hospital in the middle of nowhere? Yeah, I don't know either.
Jason and I were holding out to make a final decision of whether we should go, until after her appointment today. Kate had a big day, with IV chemo and lumbar puncture with intrathecal methotrexate. She did great and is napping now. They were a bit worried about her cough too, so they did a chest xray which looked kind of junky but no pneumonia. Her blood counts are good with an ANC of 1400 and normal hemoglobin and hematocrit. We are reassured by these numbers and a normal xray but I can't help worrying. I think we'll go anyway and pray for the best. The kids are so exicted to see their grandparents and cousins that they can hardly stand it. Wish us luck!

Team Hero

2007-07-18T15:11:00.000-04:00

A lot of you probably don't know but since I ran my first half-marathon 4 years ago I have really wanted to run a marathon. Even before Kate's diagnosis I had decided that when I did a marathon I would run with Team In Training (TNT) and raise money for the Leukemia and Lymphoma Society. Last fall I sent away for information on the program and went to a meeting but then had second thoughts. I realized that training for a marathon while building a house wasn't realistic.
So, a month ago I decided to contact the society again and inquire about upcoming marathons. Two weeks ago I made a committment to run the Disney World Marathon on January 13th, 2008. While there were many other more exotic locations (Dublin, Hawaii, San Francisco, etc.) I thought that this would be a perfect destination for my children and a way for them to enjoying the experience. They are so excited for the race and hopefully my absence on Saturday mornings will be easier to take knowing that a trip to Disney World is at the end of it all.
For each marathon the team has a child dubbed their Team Hero. For people who haven't been touched by a person with a blood cancer this person serves as motivation, if you will. They will have met an actually person with the disease, who is fighting the cancer. TNT explained that when someone is running and hurts, is tired, or wants to quit the Team Hero is someone to think about and to give them strength to press on.
Well, this morning I got a call from the Leukemia and Lymphoma society in which they asked me if I would be willing to let Kate be our Team Hero. Tears sprang to my eyes while she was describing what Kate would mean to our team and how she will be such a big part of the event. Of course, I would have been thinking about her every mile of the race but it is going to be that much more meaningful, knowing that everyone of us is running for her and her fight against leukemia.
Click on this link if you are interested in learning more about TNT and their program.

Week 2 Interim Maintenance

2007-07-12T15:20:00.001-04:00

Kate's Dr. appointment was the shortest on record! It always seems like when we brace for long days we are blessed with the shortest visits. I should pick up on that pattern! So today we were in and out of the hospital in just over one hour! It was so great! Kate's ANC is 1290, WBC is 3.1, and her hemoglobin is within the normal ranges. I am kind of nervous with her ANC hovering around 1000 but they say not worry until it dips lower than 1000. Kate is looking great and feeling good right now. We are happy for this upswing!

Those crazy lab values

2007-07-11T12:02:00.000-04:00

It seems that our lives have revolved around 4 numbers the last few months and it also seems to me, that I haven't fully explained what they all mean and why they are so important to us. When Kate's absolute neutrophil count (ANC) is too low she can't be around other people due to her inability to fight infections that she may come into contact with. When her hemoglobin is too low she has to receive blood transfusions and if her platelets were ever too low she would have to receive transfusions as well. Gratefully, Kate's platelets have never been very low.
So, here are "normal" values and what they mean to us.

While Blood Cells - Normal 5.0-10.0
They fight infection, if too low then she is at increased risk for infection.

Hemoglobin - Normal 12-16
Transports oxygen. If too low she's pale, tired, weak, has a fast heart rate and she gets headaches.

Platlets - Normal 150-450
Helps the blood clot. If low, she has bruising, petechiae and/or bleeding.

ANC - Normal is greater than 1000.
It is the infection fighting power. This is the bottom line number that causes me to hold my breath until I see it each week. Anything less than 1000 and her activities are restricted.

Now you may better understand the number mumbo, jumbo each week. :)

Girlfriend

2007-07-07T11:47:00.000-04:00

Kate has loved music since she was a baby. Jason and I would laugh when we'd look in the back seat to see our little one year old bobbing her head up and down to the beat. Every now and then Kate finds a song that she LOVES and wants me to play it non-stop. If the song isn't playing she'll walk around singing it herself (making her brother nuts). Kate's latest favorite is Girlfriend by Avril Lavigne.
The music link on the side will play the song if you click on the play button. Enjoy!

Deflating

2007-07-02T19:23:00.000-04:00

One of my friends commented a couple of weeks ago that Kate looked like she was "deflating". She is definitely shrinking back down to her pre-steroid size but is not quite at baseline. She is also feeling more and more like her old self which is fantastic. Kate had a playdate yesterday with her friend Carter and is having another one today with Olivia so that tells you that her energy level is up! She is enjoying doing most of the things she did before diagnosis and is keeping me busy with filling up her social calendar. We are just thrilled to see her looking and feeling so good.

Holy Meds!

2007-06-28T21:53:00.000-04:00

Kate's medications for this phase are a little confusing and I actually had to buy a pill organizer to keep it all straight. It is hard because some are daily, some are twice daily, some are M,T,W only, some are weekly and others only monthly. They have to be given on the correct day (of course) so hopefully we'll keep it all straight! For this phase her medications are as follows:
Every day in the evening oral chemotherapy (6-MP)
Twice daily acid blocker (Zantac)
Three days a week, twice a day, antibiotic (Bactrim)
Once a month 5 day pulse of twice daily steroids (Decadron) starting today
Every Thursday oral methotrexate
Once a month spinal tap with intrathecal methotrexate
Once a month IV chemotherapy (Vincristine)
Kate has become quite proficient at swallowing pills and today took all 6 methotrexate tablets without a problem. We've come a long way in two months!

Accessing the Port

2007-06-28T21:40:00.000-04:00

I brought my camera to the clinic today so that I could capture the process of accessing Kate's port. I think it might have been the wrong day for it though. We had a 10:15 appointment and drove around the parking garage for a full half hour trying to find a spot. Finally, I gave up and found a valet parking in a nearby building. We arrived at the clinic 30 minutes late and finally made it back to the room an hour and a half after our appointment. The lab had some complications and we couldn't get started without the bloodwork and that further delay threw a monkey wrench in our usual routine. On a normal day Kate isn't at all bothered by the poke through her port so I felt terrible when through the lens I saw her crying!Here are a few pics of the process...

Waiting to access the port

Every day before we go to the clinic, we put "magic cream" (EMLA) on Kate's port site. That way, it doesn't hurt when they poke through her skin to get to the port. Even though it doesn't hurt, Kate still doesn't enjoy the initial stick so she looks away.

That isn't supposed to hurt!

We put cream on her port at 8:30 in the morning. Due to all of the delays, her port wasn't accessed until 1:15 and I think the numbing effects had worn off by then! Now we know for next time...

Helping to flush her port

Kate loves to be a helper and the nurses let her flush her port before they de-access her. Although she was shocked and upset by the poke she was quick to forgive and help finish up the process.