HAPPY BIRTHDAY KATE!!!

Today was Kate's 5th birthday and her favorite present was her big "4 wheeler" (which is actually a 2 wheeler until her Dad puts the training wheels on). Her Dad and I had a different favorite gift though. Today we got Kate's minimal residual disease results and she is considered standard low risk ALL! This is really the best case scenario we could have hoped for and we are elated.

Amazing Story

Kate loves to draw pictures for everyone and especially ones depicting outdoor scenes. Each time we have gone to the hospital, she has drawn a picture for her doctor in which he is standing among flowers of various types. This past week she drew him standing on the grass with a large purple flower next to him. She then asked me how to spell the name of the flower, VINCA. Jason turned to me and asked if she made up that name or if there really was a flower named a Vinca. (I am happy to say that I did in fact know that there was a flowering Vinca plant).
When Kate gave Dr. Keller the picture, his jaw dropped. He asked us if we knew that her chemotherapy drug, vincristine, was derived from the vinca plant. We had no idea! Kind of an amazing story for 2 reasons - 1. What other 4 year old child do you know draws pictures of vinca blossoms? 2. What other child do you know can draw a picture of a plant that is saving her life!

Last Day of School

Ms. Judy and Ms. Alicia - We Love Them!!!

1st try with a hula hoop

Ice cream with the girls

Kate and I made a special trip back to Oak Grove YCS for her last day of Pre-K. The classroom parents and teachers had planned a wonderful party for the kids and Kate was thrilled to be a part of it. There were water and ball games, hula hoops and of course a yummy lunch from Chick Fil A. It was so much fun to see Kate back in a "normal" setting and having a great time. She was so grateful to be there and I think she enjoyed every minute of it.
Later that day we grabbed some ice cream with the other 4 little girls in her class. They were a tight group of girls that all got along very well. It will be sad to say goodbye as they all spread out over 3 schools next year. Hopefully we'll get to play with them this summer though.

The End of Induction

6 weeks ago

Now

Steroid Belly

Yea! We have made it through the first 29 days of chemo and this marks the end of induction. To commemorate the end, Kate had a spinal tap and bone marrow aspiration. This time was the roughest of so far but thanks to Versed only the parents, not the child, remember the procedure and the crying.
Next Thursday we'll get the results of the minimal residual disease test and then we'll be given our protocol road map. Keep praying that she'll be in the standard low risk ALL category.
I have included a few pictures of Kate at her steroid peak. I don't think we'd remember the drastic change in our little girl if we didn't take pictures to reflect back on later. Within a few weeks time the changes should fade away as quickly as they came and she should feel more active too. How grateful we are to have this wonderful little girl in our lives. Even now, she keeps us smiling, laughing and brings happiness where ever she goes.

Beach Fun

Although Kate didn't feel up to doing much at the beach (besides eating and sleeping) she still seemed to have a good time. She did favor pool time over the beach and loved swinging on the porch swing. These are a few pictures of mostly Kate enjoying the sunny days!

Round 4

Yesterday's trip to the hospital was less eventful than the last several (not that I am complaining about that)! Her blood counts are looking very good and she even handled the pokes without any tears. On Wednesday night I inadvertently eavesdropped as Jackson talked to her about his strategies for handling his shots and not crying. I teared up as she was getting her pokes yesterday all the while heeding his advice on closing her eyes and counting. She is trying hard to be a brave little girl...it humbles me.
Mostly this week, the doctor prepared us for the upcoming 2 weeks. Next Thursday Kate will have another bone marrow aspiration and spinal tap with intrathecal methotrexate. Then she has a week of no medications, yea! (except antibiotics) while they do the flow studies and look for the minimal residual leukemia. So in 2 weeks we'll have her "road map" of therapy for the next 26 months and we'll know if she is a standard-standard risk or a standard-low risk patient. We're crossing our fingers for standard-low which does carry a better overall prognosis. (In short, those children have a better overall probability of not relapsing after the completion of chemo).
I can't believe how well she is handling all of this. The doctors are right, when the children are this young, it is the parents that have a harder time watching everything unfold. Her sunny disposition and positive outlook on things are helping to keep me in check, that's for sure.

Changes

We returned from the beach yesterday but only because Kate had chemo treatments today. We'd have stayed the next few days with my family if we could have. There is something so wonderfully relaxing about being there. I was sad to see how profoundly different Kate was in that setting though. Usually Kate is a fish and is dragging us around to swim with her, play games and build sand castles. Last year she swam around for hours wanting to keep playing long after we needed to go. Since her diagnosis we haven't done anything that required any physical activity. She had continued to be happy and smiley which encouraged us. I guess in my mind I was correlating the two. If she was happy then she was feeling well and it turns out not to be exactly right. At the beach she was still happy but not interested in doing anything physical. She just wanted to sit on the blanket, eat snacks (more on that later) and talk about her next nap. Even at the pool she didn't want to play, just sit on the chair and observe from the sidelines. I am glad that she got outside and she seemed to be having a good time but I think I was expecting things to go differently. It's all about expectations...and part of me expects her to still be the way she was before. You are probably thinking, "the child has leukemia, of course she's different!" but when she still has her little smile and the daily interactions are the same I have a hard time predicting how and when things will be different.
Speaking of changes, Kate's hair is thinning out and we aren't sure how much longer it will hang on, so last week we gave her a cute little bob cut so there would be less to fall out. I'd wanted to post some pictures of the haircut but I couldn't find my camera after I took them. When I find it I will post them.
Kate is also round, round, round. I have taken to calling her my little cherub because of her darling moon face. The steroids have really impacted her appearance. The best way to describe her is that she looks like a pregnant woman in her 3rd trimester with a really swollen face (but only in the face and belly. She looks like the woman who looked tiny from behind but when she turns around you say, "I would never have known you were even pregnant!" Kate even rests her hands on top of her belly like I did when I was pregnant). Strange to see my little girl, who has always been petite, morphing before my eyes.
Kate also has a one track food mind and it consumes her thoughts. Apparently after one more week she'll be coming off of the steroids and that desire will be gone as quickly as it came but it is exhausting trying to keep up with a child who is constantly hungry. The frequency and intensity with which she speaks about food makes me know that this drive is not within her power.
I'll post more on the trip later and round 4 of chemo. For now we are off to the hospital.

Round 3 and more results

These pictures taken a fews days ago, accurately depict how happy we are feeling around here. We just got back from round 3 of chemo and Kate did well. Her ANC (it's the blood count that indicates the body's ability to fight infection) is half of what is was last week and is low but that wasn't unexpected given the treatments. Her other blood counts have gone down but not by much.
We also received the results of the cytogenetic testing done in New Hampshire. Kate has hyperdiploidy. Translation...normal cells have 46 chromosomes and her leukemia cells have extra copies of certain chromosomes. About 27 percent of children with B-cell ALL, like Kate, have this type of genetic abnormality and it carries a favorable prognosis! Wow, twice in 2 days we are able to say that things are pointing to a favorable prognosis!
That being said, our doctor told us that we can't draw any conclusions until the end of her induction therapy 2 weeks from today. At that time they do another bone marrow aspiration, spinal tap and measure the residual leukemia. I was trying to draw the correlation between her rapid response to the chemo and the what the residual disease at the end will be but he said that studies have shown that there isn't a correlation. An easy way of explaining it is that just because most of the cancer cells died quickly doesn't mean that there aren't some tough ones left over. Those difficult cells that are left are the ones that cause all of the trouble and have to be killed. We will wait for that last test to determine how intensive the next 26 months of chemotherapy will be. Nothing will change the length of time that Kate will need to be treated only how intensive the course will need to be.
We are embracing this wonderful news and are celebrating by going to the beach for the weekend. (Don't worry, it has been doctor approved.) We just have to slather the sunscreen on Kate and have directions to the nearest children's hospital should we have any complications. Our doctor said that it is important for Kate to continue living her normal life and doing things that she enjoys. I think we'll all really enjoy this weekend!

Early Responder

This is going to be quite a bit more upbeat than the last blog! Kate's bone marrow aspiration came back today and it showed less than 5% cancer cells in the bone marrow. (Her first bone marrow showed greater than 85% to be cancer cells). In short, she is an early responder to the chemotherapy which carries a very good prognosis. This doesn't mean that her course of treatment is any shorter, it just means that in all likelyhood she will do very, very well! I am so happy that I just can't stop smiling and hugging all of my kids. Today Kate told me that she can tell that her blood is getting better. I can see the sparkle in her eyes and her cute little giggle helps me to see that she is in fact feeling much better. We are so blessed and know that all of your and our prayers are being answered!

Bad Idea

There is a fine line between being informed and overwhelmed with information. For me, the overwhelming part does not come as a result of the medical jargon but in the stories and struggles of those that have gone before Kate. Today I found myself on a resource website for families of a child with cancer. On this site there were hundreds of links to childrens' cancer pages which contained their stories from diagnosis to present day. Reading those stories proved to be more than I could take. Here I am sitting with puffy eyes as I write this, feeling the weight of her diagnosis. Perhaps until today I haven't let myself consider the complications that arise from this illness because this is the first time since her initial diagnosis that I feel so sad.
The stories in those cancer pages were all about children who had standard risk pre B ALL - just like Kate. Interestingly I wasn't lifted up by the stories of those who had great outcomes but crushed by the bad outcomes of some of the children. Until today I haven't even let myself consider any other possibility than Kate getting better and growing up to be a healthy, beautiful girl. While reading the histories of those children it hit me like a ton of bricks that she could have some unexpected complication or relapse like they did. This was not helpful!!! Kate may sail through the treatments without a hitch or she may have complications and need hospitalizations. That is rational and logical thinking but in order to maintain my sanity I must believe that she will do well and that 27 months from now we will have made it through. Hopefully our family will be a little more loving, a little more kind and a little more grateful for the gift that we are in each others lives.

Round 2

The day began rather early for us as we headed to the hospital for treatments and procedures. With the aid of sedatives, Kate handled the lumbar puncture and bone marrow aspiration well. We did learn that her reaction to sedatives is to cry though. (In other words, she would not be a happy drunk she would be a crier.) Our doctor thinks that it is unlikely that her bone marrow will be free of cancer cells at this point but we won't know for sure until the results are back on Monday. If there are still some cells, they do another bone marrow aspiration next week and look again. That is day 15 into her treatments and studies have shown that if she is without cancer on that day she has a very good prognosis.
Kate slept for quite a few hours today but sure didn't loose her appetite. She has been begging Jason to have a picnic for days, so tonight we had one on our back deck (sans furniture) and enjoyed the beautiful evening. Nothing helps the spirits like a BBQ and ice cream cones!