One Year

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

Fears

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

Results

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

Bone Marrow Day

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

So close

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

Looking good

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

Curses...

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

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

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

Day 2

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

Ugggghhhh!

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

Still Holding

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