Not Yet There

Another quick update - we went back to Dr. Joe today to check Catherine's counts. They are heading in the right direction - SLOWLY. She is still neutropenic with an ANC of 371. Her platelets have come up nicely and are in the normal range of 186,000 and her hemoglobin is 10.4. She still can't go to school which is frustrating for her. We are going to go back Monday for another check and if her ANC is above 500, Dr. Joe will let her go back to school on Tuesday (keep your fingers crossed). Regardless, her daily chemotherapy will be held until next Friday. That means she will go 16 days without chemo - the longest break since she started Maintenance. I am trying not to let it bother me and reminding myself that this is normal. Catherine is certainly enjoying the break and being able to eat before bed (she has to take the 6-MP on an empty stomach before bed everynight).
On another note, I got Catherine's first report card today. She did very well and received mostly E's (meaning she exceeds what is expected of her in Kindergarten). Dave and I are very proud of her.
Also, Aidan James Termini arrived 2 hours after my last post. He came in at a whopping 8.8 lbs and 20.5 inches (luckily for Lauren he did not surpass his big cousin Alex who was 9lbs. 10oz ). I haven't met him in person yet, but he is simply adorable in pictures. Catherine can't wait to feed him a bottle and Alex wants to know if he will wear Spider Man underwear like him. Alex also said that he can't wait to meet the Baby Jesus (they have obviously started discussing Christmas at school). I won't be taking the kids to meet him yet as they are both still coughing and we certainly don't want a brand new baby to get sick. I'll be sure to post pictures when the cousins meet.
So that is the latest scoop here - thanks for checking in!

Quick Update on Counts

So today we all went up to Guilford (me, Catherine and Alex). Her counts are still low, but the lab technicians at Dr. Joe's office do a more detailed differential of the CBC (complete blood count) so that you get a better idea of where her numbers are going. SO...
Her WBC is 1,400 (up from 600 on Saturday) and her ANC is a whopping 182 (they didn't even bother to do ANCs in the hospital because it was so low). But her monocyte number is high (monocytes are baby neutrophils);
Her platelets are 125,000 up from 89,000 on Sunday. That's great and they see large platelets in her system which show that her bone marrow is producing platelets;
Her hemoglobin in 9.8 up from 8 on Sunday. That's a huge jump as the red blood cells are usually the last to recover. Her retic count (a measurement of baby red blood cells) is 8.3% which is a great number.

I don't think I have ever posted what normal numbers for healthy people are so as a reference to see how yucky her numbers are:
WBC range 5,000-10,000
ANC range 3,000 and up
Platelets range: 150,000-450,000
Hemoglobin range: 12.0-15.0

We go back Friday for another check. Hopefully all these baby cells mature in the next few days. Catherine misses school and can't wait to get back. Her energy level is great though and she and Alex played outside (where germs can't live) with our neighbor on the swings and trampoline and sweeping up leaves.
I had hoped to add that Catherine and Alex had a new cousin today as Lauren's water broke last night, but labor is going slowly and I think she only just started pushing. They are excited to know that they will definitely have a new cousin when they wake up tomorrow!

Thanksgiving in the Hospital

Well, we had a good 10 month run of no hospital stays. We were due for it to end, but I never expected it to end the night before Thanksgiving!! As some may know, Catherine has been fighting a cold for about a month now. She just can't kick it (see earlier post regarding a fever that thankfully didn't get high enough to warrant a visit to Yale). It certainly hasn't helped that the raised chemo dose has left her ANC well below 1000 for several weeks now. So I guess I should not have been totally surprised that she finally developed a high enough fever that we were forced to go to Yale. It's odd, she went to school on Wednesday and was in great spirits. She had seemed a little tired in the morning but I just chalked it up to the previous week's LP and Vincristine finally kicking in. BUT, she didn't even want the TV on. That is what prompted me to finally stop preparing the Thanksgiving food that I would be serving for 15, and check her temp. My heart just sank - 101.3.
Now, if any of you have ever watched the Seinfeld Bizarro episode where everything was opposite, this was our hospital stay. Nothing went the way it normally does. First, I didn't hit traffic on I-95 during rush hour the night before Thanksgiving. Second, they just quickly threw us into a room in the ER and didn't tend to us as quickly as usual (there was a big accident in the trauma part of the Children's ER). We actually were sent to the x-ray room for an x-ray of her lungs (normally a technician comes into whatever room we are in and does it there). Because of the holiday weekend, the nurse shifts changed more quickly than usual and it was a lot of floaters. So much to say. For the first time, I had to deal with the Yale doctors I don't know. Let's just say I know why newly diagnosed families who tend to meet Dr. Joe and whoever is on call from Yale, choose to still see a doctor who is not physically in the hospital and runs the practice essentially by himself (that doctor being Dr. Joe). This doctor on call, had NO BEDSIDE MANNER. I absolutely hated her. On Friday when she told me that Dr. Joe would be on call for the weekend, I actually pumped my fists in the air - right in front of her.
To continue my rambling of this awful stay...Catherine needed an IVIG transfusion (again to my faithful readers, you may recall Catherine needed this about 6 months ago and the insurance company sent the product to my home to bring to Guilford). Now Catherine has had more transfusions than I care to count and has never had a reaction to one. But of course during this bizarro visit, she did. About 90 minutes into what is a 3 hour transfusion, Catherine got uncontrollable chills - she was shaking profusely. Her lips started to look blue and her fingers were white. It took the nurse about 5 tries to get a blood pressure and it was dangerously low. They had to stop the transfusion and start pumping her with saline. About 10 minutes after that, the shaking stopped but her pulse was about 170 (about the rate mine is during a vigorous run). Then she spiked another fever. All of this was a reaction to the transfusion. They decided to hold off on it. At about 1 am, the resident on call got an order to start it again. Thankfully, it went without a hitch. Needless to say it was very scary for me (Dave was home, but just as worried when I called him). There is nothing worse than not being able to help your child and having to put all your trust in these doctors (and one you hate at that). This was my Thanksgiving night. The next day, Catherine's counts plummeted. I have not seen counts like these since Delayed Intensification. Again, the world's coldest doctor didn't have much to say to comfort me other than it's common with kids who are on leukemia protocols (her words not mine). Next day's blood draw sucked. Normally, and again it's the bizarro hospital stay, Catherine's port is so cooperative - we've never had an issue. The nurses struggled to get blood from it. Finally, they gave up - woke Catherine and I up (they do daily blood draw between 5 and 6 am so that the doctors have counts by the time they start rounds) and decided to do it from her vein - something that has not been done since her diagnosis. She handled it like a champ - of course I told the nurse to put some freezy spray on her arm first to numb the area. Those counts were a bit better but statistically the same. Today's counts - the same. They are not budging and it is freaking me out. Since we started Maintenance, Catherine's counts have gone down only twice before (and each came with their own hospital stay). But once we stopped chemo they bounced right back. They are not doing that this time. Dr. Joe assures me that I shouldn't worry - she is dealing with what is obviously a nasty virus (I know several healthy kids who are having trouble kicking it) and viruses destroy everyone's counts (cancer patients just know what those counts are all the time), she has had 6 weeks higher doses of chemo at home, and we are nearing the end of treatment and oftentimes towards the end of treatment, it is harder for the bone marrow to recover because it is tired from the hell the chemo has put it through. Now this last reason, tired bone marrow, I have heard about from the doctors and other families before - it's just hard to actually experience it. Of course, if her counts remain low after 2 weeks, Dr. Joe will look at her bone marrow to make sure she is indeed cancer free. So this is where we stand now and my head tells me that she is okay, just taking longer than I would like to recover. My heart is aching at the thought that the leukemia is back. Please say a prayer that when we go to see Dr. Joe on Tuesday that she is doing better. Until then I will remain sick with worry - and get ready for Christmas since we can't leave the house!
I hope your Thanksgiving was less eventful than ours!!

Cycle 6 Begins

Wow! Cycle 6 began today. That means that today, Catherine had what will hopefully be (knock on wood while you read this) her second to last lumbar puncture with methotrexate. I realized this yesterday. I also realized that Catherine has about 160 days left in her protocol. I cannot believe it. Believe me, I am not starting a countdown of any kind because I am scared ****less of the day she finishes treatment. Dr. Farzana and I had this conversation today and she validated what I am feeling. She said that if she were in my shoes, she would be terrified also and that for many, the first few months off treatment are more difficult than the first few months after diagnosis. That said, she said that I should trust that we have done all we can to ensure a long term survival and cure for Catherine. Of course, this entire conversation occurred in front of Catherine. I know she is paying attention and absorbing these talks I have with the doctors. Her MO is to ask questions later - when I least expect them. So, while I sat there pondering how nerve -racking the next few years will be, I was able to overhear a conversation between Dr. Farzana and a teenage boy who had finished treatment (the walls in the new building are thin). Basically he was saying that whenever he is tired or has the chills or a few aches, he is convinced the cancer is back. Now, I know that is what I am going to be thinking when Catherine goes off treatment, but she is young enough that it won't be foremost on her mind. How sad that this boy, during a time in his life when his biggest worry should be whether or not his parents give him the keys to the car, has to think about having cancer again. It really sucks.
All that aside, her LP went well. Something about Dr. Farzana, who we only see on the days of the LPs, really relaxes Catherine and the whole procedure and recovery are so much smoother. Catherine really is a champ - everything from accessing the port to wearing the oxygen mask - has become second nature to her and she doesn't even flinch or complain. And, I love the stuff that comes out of her mouth when she is out of it. Today she told Shannon, one of the nurses, that the best part of the "sleepy medicine" is sleeping. For once, she really slept great after the procedure when she has to lay flat for 45 minutes. Then it was off to the playroom as if nothing had happened.
Later on today, Catherine had her weekly before art class playdate with her friend Annie. I guess Catherine was telling her about our trip to DisneyWorld (oh yeah, we are going on our Make-A-Wish trip in February during the school break). Annie, who has been to Disney World, came downstairs and asked me to call her mother so that she can ask to have the Wish Makers grant her a wish too. I had to laugh and explain to her, as best as one can to a 5 year old, that she never ever wants to go on a Make-A-Wish trip because it's for kids who have to take really strong medicine. Annie is a smart cookie and her Mom is the friend of mine whose cousin had AML way back when so Annie gets it that Catherine's situation is not normal. In fact, Catherine had her first and only sleepover at Annie's and Annie's mom had to give Catherine her medicine that night. Suffice it to say, I don't think Annie will be calling the wishmakers any time soon.
So that is the latest and greatest here at the Vogt household. I will be hosting Thanksgiving next week - I'm very excited about that - and then the Holiday Season will be upon us. Catherine and Alex will have a new baby cousin soon. Then Christmas and then 2008 comes - the year I never imagined would come.
So Happy Thanksgiving and thanks for checking in on us!

I think it's going to be a long winter!

Well, I think we dodged a bullet with a hospital stay this weekend (knock on wood that it stays that way and I haven't just jinxed myself). Catherine got her second cold this season and this one led to a temp on Thursday evening (101). I called the doctor and she said that since it sounded like it was definitely a cold and Catherine's counts have been strong that I should wait about an hour and take her temp again. If it trended upward then she wanted me to head up to the resort known as Yale. Thankfully, her temp remained stable so I just gave her some Tylenol and sent her to bed. I kept her home from school Friday and took her to her regular appointment. Her temp at the office was slightly over 100 so they decided that they would access her port and start drawing blood cultures in the event her ANC was below 500, in which case they were going to make us go straight to Yale. Of course this was all happening in the week where her raised chemo doses were to kick in so I knew her counts would be low. They were, but we managed to stay above 500 with a whopping 624! Dr. Joe allowed us to go home with the caveat that if her temp hit 101.5, we were to head up to the hospital. So far we have lucked out and her cold appears to be getting better. I've been giving her some Childrens Nyquil at night. By far the best cold medicine I have ever given one of my kids. For once, a cough suppressant actually did its job! I better stock up before the FDA decides to take all the kids' cold medicines off the shelves. As usual, Catherine was a trooper and seemed upset that we weren't going to the hospital (she was telling me what to pack). Then I reminded her that if she had to go to the hospital, the 3 playdates that are already scheduled for next week would be cancelled. That changed her tune.

Halloween was awesome this year. Catherine woke up with the kind of excitement that one would see at Christmas time. She was Little Red Riding Hood and Alex was Spiderman. Between her Halloween parade at school and trick or treating on our block it was a long day. Trick or Treating on the new block was great. I told Dave that I need to step up my game next year. People gave out goody bags of candy and adult size candy bars! Catherine also had her Unicef box with her and asked people to donate money to the USA (for some reason the word unicef never stuck with her, but at least she's patriotic!) It was definitely one of the better Halloweens and it was nice to be able to do it in daylight since the time change is a week later than normal.

Of course, not to leave Alex out. He is starting to get his own life and I am better at setting playdates up for him. All I have to say is the crazy physical stuff aside, boys are so much easier than girls!!

Thanks for checking in on us and pray that we make it through this winter with a minimal number of hospitalizations!!