Sunday, August 30, 2009

Major hurdle crossed

I guess to begin things need to be updated in two ways. First is her ANC. ANC is the ability to fight infection. Her ANC since we have begun has been 0 to almost 0. On Thursday her ANC had come up to 10. On Friday it was 50. Saturday it was 150. Today it was 90. All of which is great news. Her ANC rising means that her body is starting to function normally. It is a start with no guarantees, but it gives us great hope that Mikayla's Fight is a fight that she is going to win. Her ANC needs to keep rising like it is to be considered for a small break before we continue the next course of chemo. Second we have had concerns about her blast counts. Blasts again are considered to be immature cells that can develop into white cells, red cells, platlets, or Leukemia. The doctor was concerned because for the last week her blasts have been around 3% and they want to see the percentage at 0. There is a lot more to it, but to make it easier to understand it is the simplest way for me to explain it. On Wednesday or Thursday they said that she only had about a 50% chance to go into remission because her blasts were hanging around 3%. We were worried that because of this we would have to move to more risky treatments that included "miracle" drugs. Today, however, we were presented with some of the best news since we started her fight. Her blast percentage was 0. For the first time since being admitted we can breath a sy of relief, the percentage - for now - means that her Leukemia is in remission. We have no guarantees that it will stay that way, but for once if even for a day we can celebrate the fact that one of our major hurdles has been crossed. video

Thursday, August 27, 2009

Long days....

We were told this am that it may take up to next Friday for final result of her lip culture to get in. This means she will have to stay in the room until then. I did not tell her at that time because I know she will be very upset to wait 7 more days before she can leave her room. She has been in isolation for almost 5 days. But we try to do the best we can. She has school, child life , games, arts and crafts , movie time , Wii time , story time , etc in her room. Thank goodness she eats, drinks, pees and p--ps well (lol). We have to measure everything. We will end up watching all the good kids movies that child life have. But again , it is for her well being and it is the protocol.
We want to thank you all for praying and supporting us everyday. Thank you friends and family. Thank you....God Bless us all....
rea

Wednesday, August 26, 2009

Thank you for my blessings...

Mikayla is like a sponge. She absorbs very well. She learns very quickly. She also will try anything and will not quit until she gets it done. She loves to do anything. And even in her little world, she will find ways to make it work no matter how difficult it may be. She requires time to get to know you. But once you are in her circle of trust, she will not leave you alone. She is funny. She does not even need to try and still will make you laugh. By the way, she is bossy. I think few people know that. Those who know her, you know what I am talking about. I don't know where she got it (lol). Mike is not bossy and she was around him the most. Maybe from Damien or Darian or Malachi. But NOT FROM ME!!!
Today, she had school. Of course , she did well. She had music with Leisel and with special participation of Margaret, Misty and Christy. We searched for ducks and frogs. We sung and danced.
She read books and I read 3 chapters of Magic Tree House book 1 as well. She watched 3 movies , Scooby Doo 1 and 2 and Daddy Day Care.
We played Wii. She won both bowling and boxing . And before she went to bed, we danced, acted goofy, called Dad and asked him if he wants to party while she was playing a baby piano toy.
We prayed and I kissed her good night. And told her that I am so blessed , because God gave me her... and Damien , Darian and Malachi. And a husband at my side no matter what.
So many blessings to thank Him. You all out there who never stop praying , Thank you....God Bless us always.........
rea

Tuesday, August 25, 2009

Believe..........

Mikayla is a very strong girl and I see that everyday. She is very smart. Teacher today said that any kindergarten teacher would want her to be his/her student. She will also tell the teacher tomorrow to bring hard stuff for Mikayla to do. Another volunteer who happens to be a kindergarten teacher and had worked with her in the past said that she has 20 kids in her class now and only 5 can recognize their name while Mikayla can write her full name. Mikayla is AMAZING. Special thanks to Ms Meme, Ms Jessica, Ms Amanda , Ms April and Ms Cooker. And my wonderful husband , Mike who makes sure KK makes it to pre school while trying to take care of Malachi, work and pick up Damien and Darian everyday.
We face challenges every day, some are easy , some are hard , and some are harder but there is nothing impossible if you Believe.... I love my husband and all our children and there is nothing that we cannot go through... To all our family and friends , thank you for Praying and Believing with us.....
Rea

Monday, August 24, 2009

Leukemia Blasts

Today, while Mikayla's doctor was visiting, Rea asked about her blasts. To us her counts looked great. Her ANC had risen to 30 and the blasts were at 3% which had fallen from 8% a few days before when her ANC was 15. Her doctor had a different opinion. He was concerned about the blasts. After a brief discussion it was said that Mikayla had about a 50% chance to achieve remission with this round. Before we started this round of chemo we were told that nearly 90% of the kids that don't reach remission with round one will reach it with round two. So much for percentages! Her bone marrow aspirate will take place around Monday next week to determine if the Leukemia has remiss ed or not. If not we have somewhere in the neighborhood of four "miracle" drugs that will be experimented on her. Others have tried them, but she will be a guenia pig so to speak. These are promising drugs for the future and are in early stages of usage from what I understand. I don't really want to know what happens next if we get to the point where we are trying to cure her with unproven drugs. We are desperately hanging on to hope that her body will find in itself the courage we all lack to fight back. Nobody has control over their own fate, but maybe there is a way that somehow when you believe in something great enough it will happen. There is science but there is FAITH.....

Friday, August 21, 2009

Hello

We worked on calendar today. Ms.Kelly helped us. She printed the days of the week. Mikayla and I glued them to different colors of construction paper and cut them. Got a platic divider from secretary and taped it to the wall in her room. We worked on identifying the days of the week, placed them in order and she is responsible of changing it every morning.
She had a 31/2hours nap today. She said she feels good, she ate good , eventhough there is some reported blast in her blood work, we are confident that it will be fine, and we will fight...fight...fight... Thank u for your cont. prayers and support.. love u ol and God Bless us .......rea

Thursday, August 20, 2009

doing well

Mikayla's week has been good. Her swelling is almost completely gone. She will begin a in hospital school beginning on Monday. Mom and Dad will no longer be her teacher, instead Ms. Kelly from Child Life will be taking over. The only problem this week was with housekeeping. Hygiene is of utmost importance with Mikayla. We addressed the issues regarding the vent and the floor to few people. "Attitude is everything". I know that they were not very happy to clean the room but I have to think about my child. I was hurt because the floor guy just came in , started to mop and was mad about having to clean. I spoke to the managers about what happened and they were going to do something about it. I told the managers that I did not sign up to be here that long , and if I had a choice I will go home, but I don't. My main concern is making sure her environment is kept clean. No need for attitude.... But it is ok , there is nothing that cannot be resolved... Rea

Tuesday, August 18, 2009

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Her own little world

Finally found some down time today to update Mikayla's Blog. On Sunday she had acquired Mucousitis. We spoke with her doctor and he put her on antibiotics. By Monday her lips were very swollen kinda like she had been hit in the face. The antibiotics have worked fairly rapidly. Her lower lip is normal and her upper lip has a small spot toward the left center that is still swollen. We ,for obvious reasons, haven't posted any pictures or videos until she is better. Over the course of this time she has remained very active racking up around 6 to 8 hours a day in the play room. Tomorrow was supposed to be her first day of school. Because of the cancer we will see how fall of 2010 plays out for the start for either first grade or kindergarten. The kindergarten teachers have gotten together and decided how to keep Mikayla up to date with school and help with getting her proper worksheets and other essentials. Thank you Bess Truman teachers. She ,like the rest of the kids her age, still received new school clothes, a backpack, a lunch box, pencils, crayons, and shoes. She has it in her own world that she will still start with the rest of her friends, but at the school in the hospital (her hospital room with mom and dad as the teacher). She is still excited to be able to finally begin. She has created her own little world in the hospital. She tells nurses what to do with pills and treatments. She thinks she is the boss of the playroom. She monitors the door for visitors to let them in when the nurses allow it. She uses her bed as a desk and dinner table. She seems to of caught on pretty fast how to adjust to what she has and realizes that despite being in the hospital that she is only limited by her imagination.

Sunday, August 16, 2009

New problem

Today Mikayla's appetite wasn't very good. Since the beginning of this round of chemo she as lost close to 1 pound. Not much, but she doesn't have alot to spare. I had come home with the older kids to prepare for the start of school only to find out that Mikayla has developed Mucositis. Here is what I have read as I have not yet spoken with her doctor to determine the severity of her condition. Currently she has enlarged lips and has vomitted up quite a bit of mucus.
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Definition of Mucositis


Mucositis is a medical term that is used to refer to mouth sores, oral mucositis, or esophagitis. It can range in severity from a red, sore mouth and/or gums to open sores that can cause a patient to be unable to eat. The lining of the entire gastrointestinal tract (mouth, throat, stomach, and bowel) is made up of epithelial cells, which divide and replicate rapidly. Imagine this: if you bite your lip, the tissue is often able to heal by the next day because of this rapid growth. Chemotherapy and radiation therapy kill not only cancer cells, but other rapidly dividing cells as well, including the lining of the entire gastrointestinal tract. This article will discuss the effects on the lining of the mouth and throat (this lining is called the mucosa).

Oral mucositis leads to several problems, including pain, nutritional problems as a result of inability to eat, and increased risk of infection due to open sores in the mucosa. It has a significant effect on the patientÕs quality of life and can be dose- limiting (requiring a reduction in subsequent chemotherapy doses).

Friday, August 14, 2009

Doing well

Mikayla is doing well. She is playing today. Her family has been rotating in the hospital, because of sickness. All and all, all is ok.

Wednesday, August 12, 2009

Not much to do

Today was a day of waiting. Mikayla was patiently waiting until 6pm to go to the play room, because it marked her 24th hour of no fever. At 6 she went to the door and hung out making smart comments like "when is the nurse checking my fever it's 6 already". About 605 she was cleared to go play. She played for about and hour and became tired and wanted to go back to her room and rest. We had some visitors come from India to see her and visit around 1 or so. Really for the most part it was just a boring day. Good to have boring days every once in awhile.

Tuesday, August 11, 2009

Results of todays spinal tap

The results came in kinda late around 10 or so. Her spinal fluid showed that it was "technically negative" meaning no blasts were found. However, they seen a single white blood cell and three red blood cells all of which was most likely caused by doing the puncture twice because the first was somewhat of a mistake because Mikayla's arm were out of position. So, this means that she has to test for two more clears before they stop injecting chemo in her spine and concentrate soley on her body if that makes sense.

Monday, August 10, 2009

Mailing address for Mikayla

I never really gave it much thought, but some people have asked about the address for sending Mikayla cards. The address is : Childrens Mercy Hospital
c/o Mikayla Bassett 4H6
2401 Gillham Rd
Kansas City, MO 64108

My only conflict here.

Yesterday some friends from Chicago area arrived to visit Mikayla. They brought a game thing called a Nintendo DSI and she hasn't put it down since opening except when she sleeps. She has become somewhat of a photographer. Today around 11 the dreaded team of rounds doctors arrived. Again they put us into a scare. They said her Leukemia was at 46% and on the rise. I showed them the CBC sheet and said that her WBC was only 1400 so why should we worry. A doctor said that we are gonna have to change approaches and chemos to be able to combat the Leukemia. Well as a parent the bad news again was taken pretty hard, but you try to keep smiling outside while trembling inside. I asked about seeing our doctor and they said he should be in around 1. Dr. Gamis (her doctor and the best man in world on AML) said other wise. He said she is doing great and that changes in her Leukemia isn't concern for alarm. He said her WBC was at a good level and declining. He explained that sometimes the bone marrow is still trying to rid itself of the original Leukemia it produced and that would more than likely explain the increase in percentage. He said that the Leukemia in the spine was kinda like Leukemia and kinda not. In other words the pathologist is not 100% sure it is leukemia. No changes are to be made to her chemo. We are staying on the same course as previously discussed and that Mikayla is doing pretty good, just the way Dr. Gamis would like to see her. Damn rounds doctors.

Saturday, August 8, 2009

Leukemia in her central nervous system

This morning the doctors let us know that her leukemia has spread to her central nervous system. I have searched and searched online for an answer while we wait to see her doctor on Monday. This is all I could find:


Leukemia cells occasionally will circulate into the spinal column in the fluid called cerebrospinal fluid (CSF). For them to cause paralysis would be EXTREMELY RARE. See, leukemia cells are blood cells and don't form a 'lump' to compress the spinal column. Solid tumors such as breast, lung, or prostate cancer can spread to the spine and cause paralysis.
Typically, if the leukemia in the spinal column isn't treated the symptoms are usually visual (blurred vision, loss of vision,etc.) or nausea/vomiting.
Treatment of the spinal column usually involves having a special catheter put in place (Omaya reservoir) so chemotherapy (methotrexate or cytarbine) can be injected directly into the CSF.
This is usually done in addition to treating the leukemia throughout the body with systemic chemotherapy


It's not to go on and we have yet to know the full impact until we speak to the doctor. The rounds doctors asked if we had any questions, but luck with them is like playing craps at a casino. We do know that something like 2x a week she has a spinal tap and chemo is injected in and a screening of the fluid is performed. While doing this they basically look to make sure she is clear 4x in a row before they quit checking for it.

Friday, August 7, 2009

Leukemia still present

Today we recieved the results of the BMA (bone marrow aspirate). We were told that it showed that leukemia was still present. Because of her blood counts and the presence of leukemia she will begin her consoludation rounds of chemo by morning. As we understand it, it is really common for patients of AML to still show leukemia when tested after induction. Mikayla is showing signs of fatigue and as such has been given a blood transfusion that she is currently still taking. A few moments ago we noticed signs that her platelets are low and after the blood transfusion she will be given a plasma transfusion. She is very talkative and is eating good. She is a bit disappointed that she could not go home so we switched rooms and are getting new decorations. She is now in the biggest room in the Oncology wing, room 6. She likes the light in the room because all three colors work. Since we will begin the chemo straight away our stay will be pushed to around September 10 or so before we have another BMA to see our progress. This round of chemo will be a bit different than the first. She may have reactions this time that we did not see last time. Types of reactions typical of receiving chemo. As a family we were a little dis trot that it wasn't eliminated with the first round. Knowing and understanding the disease helps, but we still find ourselves wondering why and what's next. We, I think, try to keep a strong outlook and pray that somehow God will quit testing us and let us see the light at the end of the tunnel.

Wednesday, August 5, 2009

BMA

Tomorrow around 830 Mikayla will have her bone marrow aspirate (BMA). This test will determine if Leukemia is still present in her bone marrow. The results hopefully will be in no later than Friday night. If the Leukemia is spotted then we will begin chemo straight away. If not we will begin to consider taking the dreaded break from the hospital. The test requires that they do a spinal tap at the same time to look for Leukemia in her central nervous system. During the exam they will inject the chemo drug Ari-C in her spinal fluid to help with killing the hard to find cells that may or may not be hiding there. If Leukemia is found it is not considered a relapse, but rather that the induction phase of chemo was not successful. They will no matter what continue to the consolidation phase. If at the end of consolidation Leukemia is found then we change tracks and start using experimental drugs not commonly used in Leukemia, but have showed glimmers of hope in the fight against it. She will be somewhat of a lab rat in the experiment to futher understand if the drugs are a benefit or not.

Dancing

video video

Tuesday, August 4, 2009

Test from phone

Slip of the tounge!

We have just finished talking with our doctor. Turns out the earlier post about an early bone marrow transplant was just a slip of the tounge. The rounds doctor misspoke and said "bone marrow transplant" instead of "bone marrow aspirate". HUGE difference! Not being here it is hard to visualize being surrounded by 5 to 10 doctors and having none of them correct the other when they say something like they did. Us as parents suck to the place we were at when we first heard of the cancer. I think I have learned not to listen to the rounds. They are the ones that told us she would not need a BMT and 20 minutes later her doctor said we did. Anyway, things are a bit different. Because of her counts we may see that the Leukemia has come back. This was expected and isn't really alarming. If it is the case then she will start next round of chemo on Friday. All of which is completley understood.

Trouble Brewing

All her CBCs are dropping. Today we were notified that she now has blasts showing in her blood. Blasts in laymens terms are Leukemia. We were told that we should be prepared for the possiblility of a bone marrow transplant by the end of the week. In all reality her whole course of treatment is going to change. She looks good and is playing well, but inside she is not functioning right. The rounds Dr. said it is unusual that her counts have not gone up, but seem to only be going down now. Normally they will see a small fluctuation daily until you see a permanant rise. Mikayla did that for 4 days then has steadily declined. The doctors said they are not being alarmist, but rather don't want us caught by surprise when and if her therapy changes. We really don't know what to read into all of this. It's as if they are withholding a tiny piece of the puzzle that we can't see. There is always a chance of relapse of Leukemia. More than a 50% chance by this stage. Usually from what we hear and read that is the reason we come back for 2 more rounds of chemo. Not fully understanding why a rounds doctor would even mention that we may end up with a BMT by the end of the week. She said the reason for the BMT was because of the blasts. Truthfully we are trying to get her real doctor in for an education session. We will be able to better understand what is happening after we speak to him.

Monday, August 3, 2009

Not going home for break just yet

This is a little confusing to me so if I lose you I apologize. We are concentrating on two number the ANC and APC. To make the ANC higher you need to produce APC. Her ANC was on the rise for the past few days, but today it went back down to zero. Her APC looks good (don't know the actual number) and the doctors say that her ANC should be back on the rise. To constitute a trip home her ANC needs to be a minimum of 250 and to have been on the rise for the last 3 days. Next up was her bone marrow aspirate. Her aspirate will determine her Leukemia count. It was scheduled to take place on her 28th day here or August 4. Because her ANC is at zero the test will be delayed. Delaying the test delays the amount of time spent at home. Her next round of chemo should start around 2 weeks from now. With the tests that need done as well as waiting on results and ANC numbers to increase at max she may get a week at home. Overall she seems pretty damn good. She still plays all day and is eating well. Her weight is becoming more and more normal Mikayla weight. Her hair seems to have stopped falling out, but will continue to do so when chemo begins again. She now wants to be a nurse when she grows up. The nurses here let her do most everything she wants. We should talk to our own doctor sometime very soon and he should help me understand better as to how long we wait and if her counts are typical.

Sunday, August 2, 2009

Saturday and Sunday

Saturday we were told her ANC was 140 which is great her target is from 250 to 500. We were also told by the rounds Dr. that we should go home Monday. On Friday, however, her real Dr. said it would be around Friday this week. Who knows. I think I can gaurantee that we will get to go home sometime real soon for a small break before her next round of chemo. She had alot of visitors Sunday. Most of the time she sleeps late like 1030 or 11, but I made her lay down at 9. Rea has been explained what to do while at home and has yet to share the information. Some more details will come shortly. Thanks