Hanging in There

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

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

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!

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

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!

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!

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

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

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

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!!!!

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!

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!