Mom had a really good night despite the lovely diarrhea from the antibiotics. Mom and Aunt Helen neither slept at all last night. She did however manage to take two laps around the floor (in the middle of the night) and she ate cornbread and milk around 2:30 this morning. She is great spirits despite the sleep deprivation. She is gearing up for tomorrow. She will have Vincrisitine and Dexamethasome. The doctor just visited with mom and he said neither of those should make her sick.

I am happy to report mom had her first blooper incident...in order to take a shower she has to have a covering for her picc line. Well she took it upon herself to cover the picc line (she was given the covering last week and was shown how to put it on) so she assumed that it was alright for her to do it. Well she gets in the shower and it gets water in it. We immediately called for Cathy, her nurse who we just love, and she came running in and jerked mom out of the shower. She had to redo the entire dressing on the picc line to prevent infection. This freaked me and mom out and you can bet that we will be asking a nurse to help apply the covering from here on out!! Mom kept apologizing over and over. We both felt really bad.

I left around 1:30pm. When I left she was up talking and laughing. It was so nice to see her smiling. She has also lost 20 pounds of weight/fluid. So far this is not bothering mom in the least:) She keeps saying, " Nat by the time this is over me and you will look like twins" and I quickly told her that I consider myself lucky if we looked like twins. She is such a beautiful person inside and out. Dad told me that she was able to eat her first warm lunch today. Praise God. We are so thankful. Tonight mom and dad ordered pizza from Every body's Pizza (its supposedly this best around) and they had a "date" in the room. So sweet! After their dinner dad headed home and left mom for the first time ALONE! She was thrilled to have a night alone and to be able to rest. We all were very worried about leaving her by herself but I could tell by looking at her she needed some alone time. It was so great to see her looking and feeling great. We cannot thank you all enough for your prayers and encouraging words. We are so blessed to have each and every one of you in our lives.

Continue to pray for mom and her strength. We know we still have a very long road ahead but God has already shown us he is in total control over Mom and her illness. She has had two great days in a row and we give God all the praise. Love you all and will update you all on mom's progress tomorrow.

Great Day!!

Today, Charmaine has had a wonderful day overall. The morning started out a little rocky with some nausea, but turned for the better! The medicine change has seemed to help the side effects greatly. Thank you all for your prayers! Her headaches and nausea are still sneaking in some, but finally under control. What an awesome feeling!!! She is starting to get a little appetite also...she ate a whole granny smith apple, a baked potato, and 2 bite-size twix bars! YEA!! She was able to walk around the hall several times without getting sick. She even got online and read this blog and all your comments by herself...thanks for sharing your comments!! She feels really blessed to have so many people concerned and praying for her. We really have the best doctors in the world!! We thank God every day for that.

Seeing Charmaine doing so well today completely lifted our dad's spirits! You could hear it in his voice. Charmaine's voice actually sounded peppy too! She is so relieved to be feeling better.

Monday is Day 11 and she will have 2 more chemos that day, but remember they will be quick...so we aren't wasting as much time worrying about them. Every chemo has side effects, but since we have learned which meds to avoid, it should go so much better!
Her immune system is going down rapidly as expected and therefore she is at a higher risk for infection and sickness. She cannot have ANY visitors, and the caregivers staying are being extremely cautious.

Thanks again for caring so much for our family...whether you are taking or picking up our kids to/from school so we can stay at the hospital, praying about our journey, sending words of encouragement, or just reading the blog...We thank you.

Stefanie (Sissy)

To follow up with Sissy's post...mom has had a wonderful last couple of hours. She got up to go to the restroom and praise God no headache or nausea. We sat and talked and it was the mom that I remember before all of this ever started. It was nice to have a few hours that she was feeling good and I am so thankful for them. She is resting well right now and I pray that continues throughout the night.

Thursday seemed to be a better day for Charmaine. She was feeling more energy...probably because of the new bags of blood! She was still having headaches and some nausea. Toward the night the headaches seemed to worsen along with the nausea. She couldn't go to sleep until almost midnight, because of a rock and roll concert going on outside our building at Emory University!!! She was furious!! The music was so loud that our windows were trembling...she even felt her bed move. And keep in mind we are on the 6th floor. I am not exaggerating. Quite a few other patients on our side of the building have complained too. Anyway, she slept good but continued to take meds during the night.

Friday morning started out with headaches, and more headaches, followed by nausea. At this point, it was important to try to get meds asap when the pain started because her headaches and nausea were related and encouraged the other. So all day we ate a few bites and drank a few sips but never kept anything down. She felt horrible all day...and the meds were not helping. The Dr. decided to remove a few meds from her list and replace them with some different ones. She is resting right now because she had a stronger one that knocks her out...a much needed rest. For the remainder of the evening and night she will be on different meds and we will see how it goes to determine if they were the cause. The Dr. will be back in this weekend to check on her. Pray that the change in meds will help her feel some relief!! The PA (Physicians Assistant)says that her levels are looking good and she should be feeling better real soon.

She has one more day of chemo left in this round (this Monday, Day 11). The PA said today they don't last long and are not so bad. Good for Charmaine to hear today!

Keep her in your prayers that the change in meds will help!!

Stefanie (Sissy)

Today mom is feeling great! She has just taken a lap around the floor and now she is resting. This morning she had a headache and some nausea but nothing a little pain medicine could not take care of! She has not an appetite and the smell of food still makes her sick. Hopefully she will be able to eat something very soon. Her spirits are good and she appreciates all the prayers. We know how blessed we are to have each and every one of you as friends. We love you all and keep the prayers coming.

Oh and about the Bone Marrow Donor Drive... I am going to call the contact the lady tomorrow about the registry. Hopefully we can get some information and get the ball rolling. Keep your eyes open about some information to follow and continue to pray for God's hand to be on the drive. I have no idea how long it will take to find a match but we know God already has a plan!! Thank you all for your prayers and encouraging words. We are so blessed to have such wonderful friends.

Love you all,
Nat

Mom had a great night considering all she went through on Tuesday. She started running a fever in the middle of the night and they gave her several rounds of anitbiotics and also did a blood culture. The nurse said this was normal for her to run a feve with the intense chemo she recieved that day. By the morning her fever had broke. This morning mom also received two untis of blood. She was still having a really bad heahache this morning and her neck was her pretty bad from the spinal tap. The nurse gave her Oxycodone for the pain and added Compaziene for the nausea. This seemd to work pretty well for mom. I left at 11:30 this morning and when I left her she was resting well. She was able to eat several grapes and some saltine crackers. I have talked with Dad and Deana several times today. Dad told me that the rest of moms day has gone pretty well. She is not in any pain and her nausea is much better. Praise the Lord!! We are hoping for the next couple of days to be some what normal for mom before she starts her next round of chemo. She started talking about food again which is MAJOR because just talking about it has made her sick.

Today she also started the Neupogen, which is the brand name for Filgrastim. It is a man-made form of a protein that stimulates the growth of white blood cells in her body. She will get one shot in her stomach once a day (we believe).

I am trying so hard to remember all the thoughts and happenings of the day. To be honest the days seem like weeks. So much happens in one day. I never thought the human body could handle so much. Praise God mom is a tough woman. She is so strong. She kept saying to me this morning (when her head was hurting) "this to shall pass." She use to say this to me when I was so sick with the pregnancies. I never thought I would be saying it to her though. The PA came in this morning, I belive her name is Mariam, and told me, "don't you worry about your mom, she is going to be just fine." I walked out in the hall with her and explained mine and moms close relationship. I said, "She is my best friend" and she explained to me that they are on top of EVERYTHING that is going on with her and that mom is going to get through this and come out better. After our little chat I felt better and my spirits were lifted. The doctors here are amazing and not one thing goes unnoticed. I am so thankful mom came to Emory and that God of course led the way.

Day 4-5 of chemo

Last night Charmaine began two different chemos that we were dreading...Vincristine and Daunorubicin. One of them took 10 minutes and the other one takes 24hrs to finish. We heard and read that the side effects would be rough...and they have been. Charmaine told me over and over during the night and today that this is the worst she has felt so far. Nausea, headaches, and pain everywhere. She is taking meds for the side effects as needed around the clock...and is sleeping a lot of the time. Today she has needed more Lasix for the fluid retention, and more potassium. A few little stitches broke loose on her picc line and were quickly mended also. This afternoon, she received another spinal tap and intrathecal chemo (enters through the spinal cord). The Bone Marrow Biopsy and the mutation test results are not in yet, but the Dr. did clarify something about her disease for us today...she does not have ALL. Instead, she still has CML but it has progressed to the acute blast stage and resembles ALL very closely. He did not have a reason for this and hopes that the mutation test results will give some answers. He says he has 40 patients currently with the same rare occurance and either 4 or 6 of them had already received successful Bone Marrow Transplants. So now we will go read up on what he told us and go from there. The chemo regimen will be the same as planned. The dr. is holding off on her new CML meds because of the combined side effects like fluid retention and headaches. Her WBC (white blood count) was down to 19,300 today, which is good.

She is remaining strong and told to me today how overwhelmed she is by the number of people who love her and are all praying...while she has no strength to pray much today. She's having a hard time being on the receiving end of the care...she's more comfortable care giving. As we all know! She did laugh a few times today and still has her spirit, just hit a rough patch today. Even though she was queasy most of day, she ate half of a few popsicles and sipped on gingerale, then during the evening she thought she might try some grapes and a pear. The nurse had them brought to us asap, and she ate a handful of grapes, about a third of a peeled cut up pear, a saltine cracker, and a whole popsicle!!

After I left, Nat texted me that she is running a fever; so they are doing a blood culture and starting her on precautionary antibiotics. We can only hope that she will feel better tomorrow! Thank you for all your prayers and good wishes. We read the comments to her when she feels like listening...and it makes her smile!

She will remain at Emory this week and on Day 11, which I counted to be March 30, she will do these last 2 chemos again. Maybe sometime in the first part of April she can go home. As for now, she can't handle any visitors, and is at risk of becoming sick from physical contact. But keep on praying for our mom!! She's hanging in there! Hope I didn't forget anything...Nat will cover it if I did.

Stefanie (Sissy)

ps...Nat is looking into planning a Bone Marrow Donor Drive in Douglas County so everyone we know can register and do a mouth swab FOR FREE to see if you are a tissue match for anyone in the National Bone Marrow Bank including Charmaine! She will let us know the details!

One more thought...I read the comments to mom when she feels like listening. She really enjoys hearing the encouraging words. Since she gets to tired talking on the phone this is a great way to communicate with her!

Its amazing what small things we learn to celebrate...mom just took a lap around the floor and she did not get sick. Praise God! She also had half of an Italian Ice and whole Ginger Ale! Sounds so small and trivial but it speaks volumes in our world. She has not eaten in two days and for her to be able to eat a couple of bites brought a huge smile to my face. She was tried after her walk but she did not get sick. We are learning to celebrate the small things. God is good!

Doctor Heffner did his rounds and her chest sounded good. He is pleased with her progress. She will start knew chemo tonight. One will last for 24 hours...be in prayer for her. She is very nervous about starting this chemo regimen. After she does the 24 hour round she will take a break until day 11. They will keep her in the hospital for observation.

As we were taking our "lap" she was asking me, "who has the kids" and "who is feeding the dinner." So mom...always thinking of others.

I will start today with some awesome news!! Moms spinal tap came back negative for Leukemia. This is such an answered prayer!!! This means that the Leukemia cells have not spread to her spine or her brain. With that said today has been very rough on mom. She started the day very sick. The doctor took her off Sprycel for the day. He said he was going to give her a break from all the side effects. Moms potassium levels were a little low. It was 3.4 this morning and they want it at 3.7. They started meds for that and they are watching very closely. Her kidneys are of major concern to me. She has always had terrible infections and the medication she is currently taking can really do a job on her kidneys if it is not closely monitored. I got to the hospital around 1:00 pm today. Mom was just heading down to have a chest xray. Dr. Courey wants to make sure she is not getting fluid build up around her lungs. I learned last night that one of the side effects of Sprycel (that only affects about 3 percent) is fluid build up on the lungs. The doctors here are on top of it though.. thank goodness!! We have not got the chest xray results back yet but when we do we will update you. Mom did not eat lunch today. The smell alone almost made her sick. We did get her some of those yummy Mayfield Banana Popsicles so hopefully she will feel like eating one soon. The doctor also old Dad this morning that he is happy with her progress and believes that she will be in remission in a few months. This news lifted moms spirits greatly.

Pastor Billy came by from my church and prayed with mom and with me. It was nice of him to do that and lifted my spirits as well. Its so nice to know that we have others who are praying for mom. Thank you all so much for your prayers and encouraging words. I pray that tonight mom will stay strong and keep up the fight. She begins Vincristine and Daunorubicin. These are two other forms of chemo. Both are VERY strong. The side effects will only get worse I am afraid. I will update a little later when we learn more about the chest xray. We thought that the Bone Marrow Biopsy results would be back today but it might not be until tomorrow until we have them. Thanks again for the prayers.

Love, Nat

Today was the worst day yet but we still know God is in control and watching over mom. Last night she was given Adivan which helped her sleep well and also helped with the nausea and headache. This morning she was really swollen and retaining a good bit of fluid. They started Lasix today which seemed to help with the fluid. After the doc ordered to up the Lasix we saw an immediate increase in output. The doc wants mom to try to move around to help break up the fluid. She took one lap around the floor and when she got back to the room she was very sick. This was the first time she has been sick. In about twenty minutes she was feeling great again. That's the strange thing about Chemo and its side effects. They seem to change every twenty minutes or so. They gave her another dose of Adivan this afternoon because she was so nauseated and it knocked her out. She slept well for several hours. Alicia is staying with her tonight. She text me earlier and said that mom did not eat her dinner. The nurse said this is normal especially in the beginning. The smell alone almost made her sick. They started the night Chemo at nine and it will go for three hours. We will should be getting the results back tomorrow from the Bone Marrow Biopsy. This will give us some valuable information. As soon as we hear we will update.

We are taking it day by day...every minute is different but mom is so strong. I stare at her laying in that bed and wish I could take the pain for her. It kills all of us to see her so sick. This is by far the hardest thing I have ever been through... I never would have thought that this would happen so early for my mom. For several weeks now I have kept asking "why." Why my mom. Any of you who know her knows what a selfless woman she is, always taking care of others and putting everyone before herself. It just does not seem fair. I envision myself stomping up and down like a child screaming "its not fair!!!" And just like a child not getting their way neither do I. I am learning to "let go and let God" but sometimes its so hard. Mom taught me so well to be in control of my surroundings and have things organized and well planned. This time we are all being thrown for a loop. Please continue to keep mom and dad in your prayers. Thank you all so much for your support.

The preliminary results from the spinal tap look good according to doc. He is pleased with the way things are going thus far and will update us on Monday with the bone marrow biopsy results. Deana is with mom tonight. Mom has had a headache off and on this afternoon but she is resting last I talked with Deana. We will update tomorrow and keep the prayers coming. They are much appreciated!

Praise God mom had a great night!! She has some nausea and a headache but it seems to have subsided. She had her first round of chemo last night at 9. Her night went well and she slept pretty good. She has had two units of blood this morning (this will be a normal routine). They started her next round of chemo at 9 this morning. It last for three hours. So far she is not having any major reactions to the chemo. I pray that it continues to stay that way. We should find out the results from the spinal tap today. Keep the prayers coming!!

Preparing for Day 1 of chemo...Today, Charmaine had a tunnel picc line put in her chest for easier access for IV's and drawing blood, then she finally had the spinal tap (a test determining if the leukemia cells have entered the spinal cord and/or the brain). Her first treatment was intrathecal (meaning shot directly into her spinal fluid) called Methotrexate, which was a very quick procedure. She has fought a headache and nausea all day, starting early this morning. Tonite she is beginning chemo which will be given in doses for the next 4 days, and again on the 11th day. Her stay in the hospital is going to be longer than we thought...prob 3+ weeks. But her spirit remains positive...worrying about us and not herself! The chemo drugs if you're interested are: Cytarabine, Vincristine, Daunorubicin, and maybe one more that I didn't get the name of. She is going to be very weak and feeling sick alot, so if you're thinking of visiting her, please call to check...it may not be the best time. Her immune system is being wiped out so she could get sick very easily.

It was kinda tough today for me and dad seeing other chemo patients and realizing what we have ahead...but we can do this!! We know God is with us every step of the way.

Many friends have been asking, "How can we see if we are a bone marrow match?" You can go to www.marrow.org to register and receive a swab kit. The cost is $52 for the kit. If your tissue is a match for anyone on the patient list, they will call you. It's a slim chance that her match will be someone she knows, but it's worth a shot!

Thanks for all the prayers. Nat is with her tonight, so I'm sure she will update soon...

Stefanie

Tonight I went to spend time with mom. She is doing well. She had a bone marrow biopsy today and she is a little sore from that but overall she is good. Tonight she took her first does of Sprycel (chemo in the form of a pill). This is taking the place of the Gleevec she was taking. Tomorrow will begin the "journey". She will have a spinal tap in the morning. They will drain fluid and will test to see if the Leukemia is spreading either to the spinal cord or to the brain. They will treat her regardless of the results for this test. She will also be receiving chemo intravenously through the picc line. So basically she will be receiving two different types of chemotherapy. We also found out tonight that her first stay will not be five days. More than likely it will be several weeks. As hard as that news was to take we know that she is better off in their hands at Emory.

I am not sure if all this makes sense...I hope it does. I will get better as times goes on I am sure. Thank you all for your love and support. Please continue to pray as she starts her first round of chemo tomorrow. I plan on heading there first thing in the morning to see her. We will update as soon as we know more.

Updated info for today...At Emory they will be doing a spinal tap, a bone marrow biopsy, and starting a picc line for chemo. She will be starting chemo immediately in the morning for 5 days, then she'll come home for 3 wks, then back for another 5 day round of chemo. This will continue for 8 months. She had a FISH test(tells cancer chromosome counts)done yesterday and a mutation test last week...both will have results next week. Sounds confusing, I know...we will share more when we know. Prayers are needed and appreciated!

Stefanie

Hi guys,

Mom just called me. The doc has called and confirmed that it is ALL. Acute Lymphocytic Leukemia. Her and dad on their way to Emory. She will be admitted today. I will keep you updated as we learn more.

Mom went to the doctor today. Not such good news but she still remains strong. Her Leukemia has progressed. She currently has CML. The doctor believes that she is for sure Gleevec resistant and that she has one of the two types of Acute Leukemia's. Tomorrow we will know for sure what type she has and will go from there. She will need a bone marrow transplant once she goes in to remission. This makes us all very nervous. Please pray for mom and dads strength during this time. This was a shocker to us all today.