New Day, Same Attitude...enough said

New Do

The last two days have been fairly uneventful (thankfully). No surprise trips to the clinc. However, the Dexameth is making her such a swollen GROUCH!!! As you can see by the grimace! She had such a chip on her shoulder yesterday that Aunt Lauren and I decided she maybe needed a new look! That always cheers us up! I cut her hair. It is cute! Much easier and less in her way! Check her out! In the first two she is sporting her new haircut and her new nightgown from Sophie and Gabby! So cute!

Clarification 11/26

Today I took Cora to the clinic just to get her levels checked again. They are still low, but holding. She will probably not need transfusion before Friday. We may check them again on Friday just to be sure. I spoke with the doctor in more detail about the conflicting bone marrow results from yesterday. In very basic terms, the pathologist's sample had 50% cancer, but was a VERY TINY localized sample. The flowcytometry sample had 3% sample, but was a VERY LARGE sample with lots of cells in it. She said that the flowcytometry sample gives a more accurate picture and probably the pathology sample just happened to be from an area in which there were many cancer cells. This is potentially VERY VERY good news. It will not change her treatment. It will be 2.5 years. If it's correct, it will put her into the category of early responders which means that the odds are with us! They will repeat the bone marrow check on Monday. Stay tuned then for more results! It looks like the chemo and prayers are working!!! Happy Thanksgiving!

Conflicting Results

We anxiously waited by the phone today for the results of the bone marrow biopsy. At 3:30 we spoke to the doctor and she said they were requesting for one of the test to be redone and they would call us back. At about 5:30 this evening, Dr. Whittle called us back and told us that he had conflicting results. There were two tests done. The first was done by the pathologist looking at the sample under the microscope. The second was done by a machine called flowcytometry. He said that when the pathologist looked at the bone marrow he found a 50% decrease in the number of cancer cells from the week before when it was done, but he still found a significant number of cancer cells. (Dr. Whittle acted like this was a typical result for Day 8 of treatment) He then said that they did the flowcytometry result was so good that he didn't believe it and asked them to do it twice. Both times the flowcytometry found less than 3% cancer which is remission status. He said that is not a typical result for day 8 and would be surprising news. Whatever the case, the good news is that the treatment is working and there is less cancer now than a week ago. They will new another bone marrow biopsy on Monday and see if they can get more conclusive results. When we called Rob's dad with these results he was totally perplexed and frustrated at why they would be conflicting. He asked me all sorts of questions about which kinds of tests the pathologist did, which I had no clue! So he said that he wants to call the pathologist personally tomorrow morning and talk with him about what exactly was done. My hope and prayer is that next week they will be conclusive and agree that there is no more cancer! As for the girl, today she was whiney and pale and begged for pizza all day. Cora is an eating machine on these meds! I was worried that her hemoglobin may have dropped again, so the doctor said to bring her in to have her finger pricked in the morning just to be sure. Then after daddy got home and gave her the pizza she'd been dreaming of she was better!

A Dance to go along with the singing

This was taken a few days ago, before the grumpiness set in. This tutu was a gift from The McLeans and Cora insisted on wearing it on top of her big belly!

Monday 11/24

Well, it seems like the steroids have kicked in and we have a very hungry little grouch on our hands. She is REALLY grumpy! I think I would be too! We went to the clinic today for one chemo treatment through and iv, one injected into the spine, and a bone marrow biopsy. It was supposed to be a bone marrow aspiration, but for one reason or another the doctor couldn't get liquid bone marrow again. The doctor said not to freak out because it may just be because anatomically it is difficult on a child so small. Her hemoglobin is holding at 7.9 so we didn't have to transfuse (woohoo!) Her platelets are 59 since her transfusion on Saturday (woohoo!). Her white blood count is still low, but holding. We still need to be very careful about exposure and can't take her anywhere. Tomorrow we will find out the results of the bone marrow biopsy to see just how effective the first 8 days of treatment have been. PRAY FOR REMISSION!!! There may still be some cancer, which is not out of the ordinary at this point. If there is, we will do another bone marrow check next Monday. We actually don't have to go back until then unless we think her hemoglobin may have dropped before then. So the bone marrow thing scared us a little, but Rob's dad chatted with the doctor and she reassured him that the blood work looks fine at this point. This is so nerve racking. It is such a waiting game. I am learning patience, like it or not! Cora was really nervous about the whole thing today and cried for like the entire two hours. Rob was trying to explain to her that there are some bad guy cells in her blood and the doctors and nurses are trying to get them out. As soon as she came to after her procedure she asked for chicken fingers, then immeaditely after that she looked at Rob and said, "Did they get the bad guys?" She's such a lil trooper!

Dec. 5th is Cora's Day at SCPS!

Our school, Savannah Christian Preparatory School, is having Cora's Day on December 5th! They are having 2 blood mobiles where parents and teachers can donate blood that will be banked in Cora's account. They are also selling t-shirts with Cora's picture on them for 12$ with proceeds going to Cora's Medical Fund! I am shocked, amazed, and honored by all that SCPS has done for us! This is why it's the BEST school in Savannah! I only wish Cora could be there to enjoy her day! Thanks to those of you helping organize all of this for us!

Saturday 11/22

We went back to the hospital today to get Cora's blood levels checked. Her platelet count had dropped more since Thursday, so we had to stay for a platelet transfusion. It was a bit of a bummer! The doctor said that it is not surprising and that she may continue to need a few more blood and platelet transfusions this early in the game. She HATES the hospital now. She cried and just wanted to go home. I felt so bad for her. She did fine with the platelets and we were there for a total of about 4 hours. Just pray for continued strength for all of us and stamina for Cora. We have to go back to the clinic for lots of things on Monday (blood check, bone marrow aspiration, and chemo.) It should be long. Pray hard for us on Monday! I am really hoping that Cora's body will begin producing platelets and hemoglobin on it's own again soon! We are so thankful for our tremendous support system. You are all so great! We couldn't do this without each of you!

Play Time!

Cora woke up feeling much more lively today. She has been playing all morning. First, we played with her balloons. (I realized I hadn't posted a picture of her hospital room where I think we had 40 or so balloons) Then we played babies and I caught her all on her own changing her babies diaper with gloves and wipies, just as I have been changing hers! I can't tell you how relieved I am that she seems to feel OK. I know it may not always be this way, but for now, we are at peace! Please pray for higher blood counts tomorrow as we return to the hospital to be checked! THANK YOU FOR EVERYTHING! WE LOVE OUR FRIENDS AND FAMILIES SO MUCH!

By the way, today at SCPS Cade marched in the 2 year old Thanksgiving with Cora's class wearing her indian costume! He is a proud big brother!

Thursday's Update

Cora is doing ok. She seems a little drugged. She isn't fussy and seems to feel OK, but is dazed and confused and doesn't have too much energy. Today we went to the clinic for an injection of chemo. We filled out tons of paperwork, checked her blood counts, got the injections, and waited watching Little Mermaid for an hour to be sure she didn't have an allergic reaction to the drug. The good news is that this medication is one that causes many patients a rash, hives, or other skin reaction. Cora hasn't reacted as of yet. The news that isn't so exciting is that her white blood cells, hemoglobin, and platelette counts are all very very low. This is partially from the leukemia and partly because the chemo drugs are lowering them. They are particularly concerned about her platelettes. (I don't know how to spell that word.)We have to take her back to the hospital on Saturday to have her blood rechecked and at that time if it is still low she will receive a platelette transfusion. Please pray that her the counts will raise on their own. Having a low white blood cell count also means that right now is not a good time for her to go anywhere or be exposed to anyone that could possibly be sick. This is the part that makes mommy crazy. I am so worried about her catching a secondary infection that I don't want to take her anywhere or anyone to touch her. I worry that Cade may bring something home from school. Pray that I can chill out!

We're Home!!!

Cora didn't have any allergic reactions to her first 3 medications that were administered last night. She even took her really nasty tasting steroid like a champ in chocolate milk. She slept very well last night and played all morning. Her blood counts were moving in the right direction and her vital signs were strong. To our surprise, the doctor came in this morning and said, "Everything looks good and she is reacting well so we aren't doing anything here that you can't do at home. So you can take her." I freaked out a little just because I was so nervous to be responsible for her at home and so scared of complications. After hours and hours of conversations with doctors, nurses, and the pharmacist, here we are. It is still nerve racking and we will have to go to the outpatient clinic every few days for injections and treatments. (Her first clinic treatment is Thursday at 11) We are only beginning this battle, but I feel hopeful and good about things at this point. We know all the prayers are working. Cora was so glad to be home. She just sorta waddled around all night with a smile on her face. (she has a stiff sore back from the marrow biopsy and a terribly swollen abdomen...that's why it was a waddle) When I put her in her bed she rolled and rolled around with a big grin and told me that her bed is so soft! She is already feeling better. Pray that we will be very accurate with her medications and really on top of any symptoms that might occur. PLEASE keep praying! We had more visitors and calls and cards again today! Our entire family is completely in awe of all the love and support we are receiving. We will get through this!!! Cora's so tough!

Just keep singing...

pictures of hospital fun

Surgery Today

Last night was rough. She was really swollen and could not sleep. She tossed and turned and cried and it made mommy cry and no one got sleep. After some meds this morning and lots of wet diapers, the swelling is down and little and she was ready for surgery. Surgery went pretty well. They gave her drugs to make her light headed and sleepy with us in the holding area, but couldn't put her to sleep until they were in the OR. The drugs were to help ease with separation, but I'm telling you, this girl is so strong! The drugs didn't even knock her out or make her too tired. (The anesthesia nurse even said, "she is strong.") Which meant she was really sad when they had to take her to the OR without us. BUT...the procedure went well. No complications. She had her first injection of chemo and they checked her spinal fluid and found NO CANCER in her spinal fluid (praise God!) So we will continue with the iv chemo drugs through the port in her chest. Hopefully she will take her steroids orally so that we can go home by the end of the week. Today started bad, but ended fairly well considering. She didn't sleep last night or all day and is sleeping now. We are hoping for lots of sleep tonight. The next few days will just be the beginnings of chemo. Her hair will be gone in about five days, which makes mommy sad although I know it doesn't matter! I just hate that she will "look" sick! Hopefully as we move on to chemo phase 2 it will grow back in about six months! I love you all and so appreciate your prayers, cards, thoughts, and everything! SCPS has been so awesome! I loved the prayer request note that came home in Cade's folder! We are so loved!

The Plan for Monday

Today has been a whirlwind! I cannot even tell you the amount of information we have been given in the last 24 hours. I am trying to be positive, but so scared about everything! I just want to do everything right and it seems like so much to do! It's going to take us awhile to find our new "normal." We met with the doctor today for like 2 hours and discussed everything. Her first round of chemo will last 36 days. She will be on 4 different drugs at different times throughout those 36 days. The first few days she will have the most medication. She will lose her hair within the first 3-4 days and have other symptoms, but we will have to find out which symptoms she will display. 2 of the 4 drugs must be taken by iv, 2 by injection and 1 by iv or mouth. When we can go home will be determined by how the first few days go. Cora has to have all of the medicines no matter what, so if she is capable of consistently taking the oral one we may be able to go home by next Friday and just come in day to day to have the drugs administered. If she will not take medication orally, we could be in the hospital throughout those 36 days (worst case scenario). Pray that she will take the meds orally, she has always done that well in the past. They will do bone marrow aspirations again on days 15 and 36 to check her status. If she is in remission on day 36, we will advance onto chemo phase II, if not, we will prolong phase 1. (pray for remission right away) Tomorrow will be a hard day. She will have a portacath put in, a spinal tap and injection into the spinal fluid, and her first chemo treatment. It will be rough on all of us. Right now she is swollen and eating everything in sight (swollen from all the iv fluid), but in great spirits. She had fun seeing lots of visitors today and got to play with her buddies Gatlin and Marshall for a few minutes. She LOVES visitors. We noticed that all day long she didn't ask to go home once until it was quiet and then she started to ask to go home. Visitors are a great distraction. We are however asking that no visitors come tomorrow on Monday. We just don't know what to expect and she will pretty much be in procedures all day long. After that first dose of chemo, she will be more susceptible to everything. The doctor said visitors are fine, but they need to use sanitizer, and not come if they have so much as a runny nose or cough or have been exposed to any type of sickness directly. The doctor also said not to treat her like a girl in a bubble and let her try to be normal while paying attention to germs. After today we would really appreciate if visitors would call first and come only 2 at a time. PLEASE still come. This will just allow us to pay close attention to sanitation.

The details are the things I am stressing about most at this point. Cora's body fluids (all of them) will become toxic and I will have to wear gloves to change her diapers, wipe her nose, and handle her pills. Pray that I can be a quick learner and can remember to pay attention to even the slightest details. One of her medications also usually causes children to become aggressive and pretty mean. This symptom will last throughout the first 36 days so we are going to have to be firm, but patient with her.

Thank you again for your love, prayers, and support! Our room gets fuller and fuller each day and Cora loves it! I have never felt so loved in all of my life!
We love you all!

11/16/08

Cora slept well last night. She only woke up a few times sore from the bone marrow biopsy. Tylenol kicks the pain pretty quickly. She's sick of the hospital already. Today she may have to have some testing done (EKG, etc) to prepare her for surgery on Monday. Her ALL is ALL B (which ist better than ALL T) and the infected cells are only in 15% of her blood, which I understand is pretty good. This is all so confusing and new to us and I may be reporting things incorrectly, but things look like they could be much worse. Monday will be telling. I will post more then! Thanks again for all your support and encouraging words!

Cora

If you are checking this blog, you know Cora has been diagnosed with leukemia. We just found out that her leukemia is (ALL) Acute Lymphocytic Leukemia. This is the type with which they have had the highest success rate in most patients. We do not know the degree of aggressivness of ALL. There are varying degrees. They sent genetic tests off to find that out. Those results will be back in about two weeks. In the meantime she will have a portacath put in on Monday. At that time she will also receive a spinal tap (to check fluid)and injection of chemotherapy. After that we will start steroids and the initial chemo process. Monday will be hard on her. To date, her spirits have been pretty good and she has been a trooper! Thanks for caring about her so much!

More halloween and party fun!

Party Time!

I forgot to post that Cade has his birthday party early since he wanted a Halloween birthday! It was a spooky good time with apple bobbing, a mummy wrap and haunted house cake!

Halloween!

We had a ball trick or treating! Halloween should always be on a weekend! Check our the flower and the knight! Cade has officially declared Halloween his favorite holiday. This morning on the way to his soccer game he said, "Well, another Halloween has come and gone!"