Home Sweet Home!

Yay for our cozy house! I have never wanted to be home so badly. I missed Cade and Rob and although it was 2 nights, Cora and I were both so ready to blow that joint! Anyway, she is home because the blood culture didn't show a bacterial infection and she didn't continue to run fever. Her ANC is not up. It is 192. He let us come home on the premise that we will go back on Monday to the clinic to get her checked again. She is still coughing and runny nosed. So we don't expect chemo on Monday, but are praying that her ANC will be moving upward. If it isn't up in a few weeks I think she will have to have another bone marrow aspiration to see what is going on. We are expecting her bone marrow to kick in and start producing white cells on its own. She's in great spirits. Right now she has a sword in her hand and she is carrying around a bag of gold coins saying, "Argh Matey, this is my treasure." So how much better than that can you get???? OK, the Captain is calling me, I better go before I have to walk the plank!

Waiting

Well, today was pretty much boring and unproductive. Cora hasn't run a fever since yesterday. She actually feels great and it was pretty hard to entertain her in a 10x15 room all day long. When she woke up this morning they ran a CBC and her ANC was lower this morning than it was yesterday. It was down to 174, no one really knows why. We are hoping and thinking probably just lots of chemo and a cold keeping her down. The bacteria culture they did on her blood hasn't shown bacterial infection so far (which is good.) So depending on what the counts look like tomorrow morning, we will most likely get to go home. Unless, they drop dramatically. We are hoping that with the maintainance fluids and antibiotics that have been going into her port, the ANC will start to make an upward trend. Dr. Whittle doesn't want to dwell on what we will do if it doesn't go up, because he thinks it will on it's own over the course of the next week. Hopefully by a week from Monday we can start the chemo again. Thanks for checking in on us and the sweet phone calls and prayers! We love you all!

Hospital Visit

Well, we knew we couldn't keep the bubble girl well forever, and here we are back in the PSU. She has had extremely low blood counts that aren't quickly recovering despite the break from chemo. She has thrown up a couple of times the past few days and had a runny nose and cold symptoms. Today she got a fever and it reached the magic number of 101, so we were admitted to the hospital. Her ANC has once again dropped to 220 (it was 340 on Monday). So...this is a waiting game. They did a blood culture to check for a bacterial infection (it takes 36 hours to get results.) If it isn't bacterial, which the doctor doesn't suspect, that means it is probably viral and that is probably what is keeping the counts down. We don't know exactly what action that will entail. Tomorrow they will test her for RSV and just watch her counts. Since we have been at the hospital, she hasn't run anymore fever and is playing and acting like she feels fine. Hopefully, the counts will start to come up on their own. Please pray for a quick raise in counts! The sooner we can get out of here the better. We will update tomorrow.

CONFINEMENT CONTINUES!!

Well, we went back to the clinic this morning and were home by 11:30. No they didn't get us done that fast, Cora's counts are still too low for chemo. Remember that she can get the chemo if her ANC (absolute Neutrophil count) is 750 or higher. Last week it was 550, today it was 380. AHHHH! This is making me crazy! Once again, the doctor said it is fine and normal for counts to take this long to recover. She said that sometimes in very young kids, especially girls, the chemo is actually an "over treatment" and that is why the counts get so low. So once again, we will stay home all week and bust out the Chlorox wipes to try to keep the germs at bay! We are 2 weeks behind in treatment, and she won't have any chemo meds at all this week. Of course mommy's fear of low counts is relapse, or the need for more transfustions, but her hemoglobin and platelets are holding and there are no blasts at all in the blood! Praise God! So this week we are hanging around and praying for higher counts! Thanks so much for checking in on us!

Commenting

Several people have told me that they would love to leave comments on our blog, but cannot because they do not have a google account. Well not anymore. I changed some settings so that anyone should now be able to comment. Let me know if you have trouble!

Pennies for Patients Flyer!

Too Low for Chemo!

Cora has been a little puny the last few days. She has had a really bad cough that she can't kick, NO APPETITE AT ALL, a low grade fever, and a very upset tummy. We couldn't get her to eat much and when she did, she couldn't keep it down. I spoke to the doctor Thursday night and he said to bring her in Friday morning, just to check on her. We went to the clinic on Friday and her ANC (Absolute Neutrophil Count) was 1045. This is the test they do each week on her blood to see how susceptible she is to infection and how well she can fight it. Anything over 1000 is really good. So the doctor said she looked a little dehydrated, gave her some fluid through her port, and sent us home. He also gave us a prescription for an anti-nausea medicine. So she improved all weekend. She started keeping food down, no more fever at all, and the cough is a lot better. We went back today for chemo and they checked her ANC and it was down LOW to 550. They won't do the chemo unless it is 750. So after 2 hours of waiting, we packed up our things and headed home. The doctor said he was not at all concerned about the drop in her counts. He said this is normal at this point and probably a result of all of the chemo and a little bit of a cold at the same time. He took her off her oral chemo medications that she takes at home and said she could have this week off in an effort to get her counts back up and we will go back again next Monday. So...we are a week behind, but that is OK. We are going to spend this week quarantined at home and pray for better counts next week so that we can move ahead.

The funniest part of the day was when Cora woke up this morning so excited to go to the clinic. (Poor kid, that's just about the only place she's been going lately!) And I said, "Cora what do you want to wear today?" Cora who is very into fashion picked a plaid skirt out of her drawer and said (no joke these are her real words), "I want to wear this hottie tottie little number!" I think she has been spending WAY too much time with aunt Lauren! So here's a picture of her outside the clinic this morning in her "hottie tottie little number!"

LLS Pennies for Patients Slideshow

SCPS Upper School does a "Pennies for Patients" fund raiser each year. This year Cora was asked to be the Honored Hero for the fund raiser. Proceeds go directly to The Leukemia & Lymphoma Society. They provide all sorts of assistance to families affected by this disease, so how could we pass up an opportunity to increase awareness on their behalf. The Pennies for Patients kick off is Wed. Jan. 28th. We have no clue what Cora's ANC (immune system) will look like in a week and a half, so she may or may not be able to be there. Daddy will be at work, so that leaves mommy to represent! I put together a slideshow to show, so here's a sneak peek!
This is the NEW edited version, free from typos (I hope!)

Make a Smilebox slideshow

Big Shot!

Cade doing his expression for "shocked!"

Cora sitting on her new big girl bed that she now sleeps in every night!

And no, I don't mean that Cora is a big shot! But that is what happened at our clinic visit today. It was actually not too bad. Her chemo today was a shot in her thigh muscle---a very big shot! The good news was that they didn't even have to access her port. Only one big shot. She screamed, but it ended as quick as it started! We had to hang around a little to be sure she didn't react to it, which she didn't. So we don't have to go back until next Monday and at that time she will begin her "Interim Maintenance" phase of chemo. That phase is much longer, almost two months, but she will only go to the clinic every 10 days. The only catch with this is that the visits will be longer because they can't administer the chemo until they are sure that her blood counts are not too low. If they are low, we skip the chemo that day and wait 4 days and try again. So our prayer as we begin this phase is that her counts are OK on clinic days so that we can get the chemo and get through this phase as quickly as possible. This is also the phase where we will probably have to spend lots of time at home to shield her from germs. Low counts=Susceptible immune system! We just want to once again thank you so much for all of your support and positive thoughts and comments! We have been total "prayer hogs" because we have been so consumed with leukemia lately. I realize that many of you are going through difficult times too right now and please know too that we think of you and pray for you often. I have an old friend who is going through her own struggles right now with her precious baby girl, Lilah. Just reading her blog and her encouraging words and thoughts is like therapy for me. Click the link at the side of this page that says Gina Burch's blog to read her sweet words and please keep baby Lilah in your prayers as well. Have a great week! Here are a few pics from the weekend!

Down Hill Drop

OK so everyone who has been through this before tells us that it is like a constant roller coaster. Well today we had our first major down hill drop! It scared us like crazy, but turns out that we are on the next straight away cruising along. We went back to the clinic today for Cora's spinal injection that she was supposed to have on Monday. Her cough sounded better, not great, but good enough to be sedated. So it was a go. After listening to her heart, Dr. Johnston sat down and told me there was something he wanted to speak with me about. He said that last time they did a spinal tap on Cora there were extra white blood cells in her spinal fluid and a few of them looked abnormal and resembled leukemia cells. He said that he would be VERY surprised if she had relapsed in her spinal fluid because she had taken to chemo so well so far. He did say that he wanted to take an extra sample of spinal fluid today for further testing. I broke out in a total sweat and nearly had a panic attack, but for Cora's sake I held it together at the doctor's office. They did the procedure, everything went fine, and he said he'd call me this afternoon after pathology reviewed this spinal fluid sample. We left the office, I got home, put a movie in for Cora, got her a snack, and went in the back yard and completly lost it!!! The thought of relapse makes me crazy! The worry is something I cannot even explain to you. I would love to say that I don't worry about what I can't control, but I am not there yet! Anyway, Dr. Johnson called this afternoon and said that for now he thinks everything is OK. I am about to get really technical here, but there is no other real way to explain it. Here's what he told me.
You typically don't have white blood cells in spinal fluid. An increased number of white blood cells can mean leukemia. A leukemia cell looks a little different than a white blood cell and reproduces much more rapidly. Sometimes when you inject chemotherapy into the spinal fluid, you can get a few white blood cells in there as a result of the chemo. On December 13th, Cora's spinal fluid had 0 white blood cells in the sample. The following week, her spinal fluid had 1 white cell. The third week, her spinal fluid had 3 white cells. Last week her spinal fluid had 4 white cells and a couple of them looked abnormal. THE ABNORMAL CELLS WERE THE CAUSE FOR ALARM! However, leukemia cells do not wear a sign that says "I AM A LEUKEMIA CELL." They do reproduce very very quickly which means if there were more today, this would not be good. Today's spinal fluid sample only showed 1 white blood cell. Therefore, we cannot be sure, but it doesn't look to be any type of relapse. The abnormal cells could have been immature white cells. This is fabulous news for now. He said from now on we will just check her spinal fluid very very carefully. So while this is not as 100% certain as I would like, we will take it for now! Thanks so much for all of your prayers and support! We love love love you all and couldn't do this without you! As for our little patient, Cora is feeling great and looking so much better! She is getting very very silly and perky! We love her spunk! It's a good thing for her to be spunky!

Clinic Today 1/5/09

Clinic today was a real bummer! Cora was supposed to have a chemo drug injected into her spine while she was sedated. We arrived, port accessed, blood checked, (levels still OK, but dropping again)and then saw the doctor who heard her cough once and said there is no way we could do the sedation and chemo with her lungs sounding like that! So...we did a breathing treatment with a nebulizer and got some new prescriptions and came home. We got a nebulizer and some albuterol and are following doctor's orders and doing breathing treatments every 4-6 hours until Thursday. Hopefully the cough will be gone by then and we can go ahead with the chemo then and that should't set us back much at all. Please pray that her cough clears by Thursday. She feels much better, but the lingering cough does sound yucky. She still isn't eating or drinking much. We did get some liquids through her port today and she ate a little more. She had one medication that she took nightly that she just could not keep down. We were able to get that one changed and she took the new medication tonight and it didn't seem to upset her stomach. Stay tuned on Thursday to see what happens...Never a dull moment around here!

Skating, New Years, and Leaves (Oh My!)

Cade (spaghetti legs) Garola on the ice for the first time!


Cheers to 2009!


Happy New Year!


My new yard men!


Cora taking Chemo Duck for a ride in the stroller on an 80 degree December day!

The last few days have consisted of more visitors (Gran and Pop Pop), playing outside, a trip to the Civic Center for skating, and lots of coughing. Cora is feeling pretty good, but doesn't have an appetite at all and still has a bad cough. We are thankful it is nothing more! And glad her counts have been up a little so that we can take her in public some!