Mikaylas Fight

Wonder Girl

2011-08-29T03:59:00.000-05:00

Book time

2011-04-18T02:41:00.001-05:00

Leukemia - Yea...

By Michael Bassett

Book Preview

MRI results

2010-10-21T04:56:00.003-05:00

The results have come back for her MRI. They found necrosis of the joints and are certain it is from the high doses of steroids during December. Little is to be done for now because she doesn't present any pain or symptoms associated with the necrosis. We were offered a full body CT Scan to determine how much damage has been done to the other joints, but opted not to proceed. We weighed the good and bad and decided that if she doesn't have pain or symptoms currently that we need not subject her to anymore radiation than needed. At some point in the future we will have to deal with it, but for now I think is ok that she takes a break. The spot on her lung still remains sort of a mystery. The words from the lung doctor are "It looks like it is small and from a previous infection, maybe from her past H1N1 diagnosis." also when asked she says, "No, I don't believe it's cancer, but rather something in the line of what I just stated". Half assed assuring!? At best she is saying she doesn't know what it is or what it is from and told us to come back in 3 months for a follow up scan and we will see what is happening. All and all we came away from clinic feeling better and more optimistic than when we went in.

MRI and necrosis

2010-09-25T11:38:00.003-05:00

Yesterday Mikayla had an MRI on her shoulders to determine if in fact she does have necrosis at the joint and if so what is the extent of the damage. My "stand-in" doctor did not elaborate much other that in short saying that it happens in some patients and that it is basically the loss of blood supply to the bone. Today after several hours of digging I stubble upon this - Some complications and side effects can persist for a long time or may not occur until months or years after the transplant. These include:

Graft-versus-host disease (GVHD), which can occur in allogeneic (donor) transplants. This happens when the donor immune system cells attack tissues of the patient's skin,
liver, and digestive tract. Symptoms can include weakness, fatigue, dry mouth, rashes, nausea, diarrhea, yellowing of the skin and eyes (jaundice), and muscle aches. In severe cases, GVHD can be life-threatening. GVHD is often described as either acute or chronic, based on how soon after the transplant it begins. Drugs that weaken the immune system are often given to try to keep GVHD under control.

Damage to the lungs, causing shortness of breath

Damage to the ovaries in women, causing infertility and loss of menstrual periods

Damage to the thyroid gland that causes problems with metabolism

Cataracts (damage to the lens of the eye that can affect vision)

Bone damage called aseptic necrosis (where the bone dies because of poor blood supply). If damage is severe, the patient will need to have part of the bone and the joint replaced.

All the BOLD items Mikayla seems to have or have had. Most likely her ovaries have been damaged, but the doctors say we will look into that later as it really has no implications on her health and she is still just a child. As far as cataracts go I don't think Mikayla has any vision problems. I don't recall any tests of her thyroid other than the doctors feel her neck in clinic visits to check for swelling.

Back to the necrosis. A research paper From Lariboisi`ere Hospital, Paris, France suggests that it is a problem that is related to the occurrence
of graft-versus-host disease. This is a multi-organ
syndrome, rather similar to a collagen-vascular disease. It
results from a systemic immune reaction by the donor cells
against host cells. Atkinson (1990) considers that graft-versus-host
disease treated with continuous steroid is the principal risk
factor for late infections. It may also be an important cause
of functional impairment by causing sclerodermatous skin
changes, joint stiffness, muscular dystrophy and polyneuropathies
(Kolb and Bender-G¨otze 1990). In other words, it's not the GVHD that is the cause, it's the steroids used to treat the GVHD. They go on to say that decompression does not have any advantage in delaying the need for joint replacement and it should be bypassed to reduce the risk of infections due to surgery.

I think our decision ahead seems much bigger than originally thought. Doing a joint replacement at a young age will mean that she will need more replacements as she ages into an adult. However, if she is left untreated or treated with decompression we really are not doing her any justice. Her sight of necrosis is not that common. Most happen at the hip. On her next appointment we discuss what is what about her shoulders and we will insist on finding out if necrosis is also occurring at the hip. Necrosis is an evil word...

Ear, nose, throat DR

2010-09-17T10:45:00.002-05:00

Yesterday, after months of waiting, we finally got to see the ENT. He said that Mikayla has some rhinitis (spelling?) and that she suffers from post nasal drip as well as allergies. We assumed that was the case, but that is not really why we went to see them. He prescribed flonase. I told him that I wouldn't give it to her because in the past flonase was the only med she was on when she would just be walking and collapse. He gave me a spill about how it has been prescribed for 20+ years and he has never heard of such a thing. I told him think what you will, but I am not given it to her. He changed his mind and decided on a steroid mixed with saline squirted into the nose. The med is in the family of meds we are concerned with as being the root cause of her skin falling off in December. I explained that to him and the answer he gave me was that it doesn't enter into the blood stream and that he does it everyday. Whatever! So at least we were able to determine that yes she does have PND and the next time she is put to sleep they will remove her tonsils.

CT scan results

2010-09-15T16:02:00.002-05:00

In October, Mikayla had developed a mild "hack" kind of a cough, but not really. The doctors in KC had tried some antibiotics, but for the most part it never really went away. Because of the on again off again nature of the "hack" they were a little bit baffled, but never too concerned about it. We tried PFT's and they always came up clear as well as x-rays. I had asked in the past for a CT scan, but it wasn't issued due to the fact that it didn't seem medically necessary and the doctors didn't wan to expose her to more radiation if we didn't need to. Today, however, we finally received the scan. There were 3 results that still leave more questions than answers. Result 1= Mild air trapping (likely small airway disease)/ Air trapping, also called gas trapping, is an abnormal retention of air in the lungs after expiration. It is observed in obstructive lung diseases such as asthma, bronchiolitis obliterans syndrome and chronic obstructive pulmonary disease. The cause is obstruction such that the patient is unable to expel air completely. So we will see a lung specialist to see what they think it is. COPD, asthma, or B.O.S. 2=Minimal left lower lobe patchy airspace opacity (her lower left lobe has a dark spot)? who knows that will be up to the lung specialist. 3= Sclerosis and fragmentation of the bilateral humeral head epiphyses/avascular necrosis. (Avascular necrosis is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone's eventual collapse.)in short she is losing the blood supply to her left arm at her shoulder. That last one was a bit of a surprise considering we looked at her lungs not her arm. The radiologist or computer has a keen eye. The course of the next month will present more answers. We will update as we know the answers.

Settling in Seattle

2010-09-03T14:20:00.003-05:00

Well it's been 2 months since my last post and many things have happened. I guess as you can tell by the picture Mikayla is doing really well. One year ago we had nearly finished 2 rounds of chemo with little to show for it. Her had not achieved remission and our minds were swirling about what lied ahead. It was a hard road to travel, but I think things are working out well. Mikayla has some residual effects from treatments that include chronic cough, nasal problems, and two different colors of skin. Time will dictate, but from what we understand these should all clear up with time and treatments. We miss our family and friends, but we are starting to settle here nicely. Our care team in KC was the greatest and will never be replaced, but so far the team here is doing pretty good. Our oncologist has hooked us up with a geneticist to evaluate Mikayla's genes to help determine what is what and reasons that may or may not be. Confusing yes, but in the end maybe I will understand exactly what is going on because it is way beyond my minds capacity to identify with. We have made our big move and things are going great. Here in Seattle it always seems to be comfortable outside. We have taken a liking to the outdoors and enjoy all that the sound boasts. Parks, lakes, and mountains to name a few. Mikayla wants to go, go, go. There is no stopping this girl.

2010-07-06T10:38:00.002-05:00

Good Morning to you all our friends and family. July 4 , 2009 KK complained of severe back pain so we took her to the E.R. where she stayed for almost 5 hours and came home with antibiotic for possible UTI. Then Sunday was here and she was very tired , running a low temp fever and just did not feel well. July 6. 2009 , she still feel the same , I went to work , Mike was watching all the kids. Today was the day , a year ago when I got the phone call from Mike that she developed numerous bruises all over her body. I left work at 1:30 pm , and called her Pediatrician and was told to bring her in around 2:30 pm. I was very scared. Had this feeling that something was not right. When Dr. E saw her , he said , "I don't know , but we may have to rule out LEUKEMIA." There was silence in the room , I was hoping it was just a dream. But it was not . We were told to go to the E.R. for prelim labs and wait for a phone call. Things were not looking very promising. We got a call 4:45 from her Dr. and we were told to start packing , he is sending us to KC....Our lives were never the same since then. It was a very long journey. I saw my family fight!!! I saw my daughter FIGHT!!!! I saw the world fight with us...All the things happened to us made me realize that there is a bigger power who is in control. It is true, that there is nothing that God will give you that you cannot handle. With our family, my husband , my kids and our friends we are still here FIGHTING!!!! and WINNING!!!!
Mikayla is doing great. She is in remission.....She is back to her laugh, her orneriness , her bossiness ...she is a MIRACLE!!!!!!! Today we celebrate strength , hope , faith , courage , love , patience , Mikayla's fight and most importantly, MIKAYLA'S VICTORY!!!!!!!!GOD BLESS...........

2010-06-05T11:16:00.002-05:00

Mikayla is doing good. She is loving Indoor Swimming 2x week through Webb City. Praying that she continue to stay well and healthy. Her next appointment in KC will be June 10, 2010 and will have Pulmonary Function Test (PFT) in the morning at 8:45 then to the Hemoc Clinic for Labs/Exams. Thank you again to all our family and friends. Rea

moving ahead

2010-06-01T20:23:00.002-05:00

Today, despite what's been going on, Mikayla took on a new challenge. She is now learning to be a competition swimmer like her brother and sister. Her goal is to do at least one swim meet before the end of summer. She woke up early today with a smile hoping it was already time to go and was so eager all day to get into the water. She had fun and now her ego is larger than life. She won't quit talking about it. Good job Mikayla! It is something she has longed for since last summer. She was given final clearance last week. As for the falling down and dizziness we still have yet to receive any new information, but will post what we hear as it comes down the pipe to us. Thank you all for keeping up.

back home

2010-05-27T23:37:00.002-05:00

Today was pretty uneventful. We arrived at clinic around 930am and began the day with a CBC. Shortly after the CBC was drawn we had a three step blood pressure screening. Laying down, sitting, and standing up. All of which turned out to be within normal range. The NP came in and we discussed all symptoms and then she gave Mikayla a head to toe exam. She noticed that her right ear was a bit red and that her gums were a little pale. Not much was made about the discoveries as they really didn't present to be the problem causers. After Mikaylas check up the NP left to get the doctor to have him take a look and to give some insight as to what he thought the problem would be stemming from. The doctor asked some questions and tested her fine motor skills. She checked out and he then listened to her heart. All seemed ok. The doctor said she doesn't seem to have any neurological problems and that he was 98% certain that our ECHO and EKG tests scheduled later in the day would not give us any insight as to the cause. He said he was a bit baffled as to what to tell me is causing the symptoms and that since she has not been dizzy since Sunday that things are most likely settled and it would go away. We have to wait for results on the heart for a few days, but I was felt better as a parent knowing that I am at least getting tests and not hanging out with my hands in my pockets waiting for something bad to happen. With no signs that we had problems in the ECHO and EKG room I had begun to think that maybe it was just something like a fluck. Maybe lack of sleep or a previous infection that only recently burned off. We left the hospital around three in the afternoon and headed home. About an hour into the drive we pulled in to get gas. Mikayla was asleep in the back and had to be woken up to go inside with me to pay. From waking up to getting out of the van happened in the span of like five minutes. Before getting out I asked if everything felt fine and if she was dizzy she said all was ok. Her first step she took there she went. She began to fall right away as if she had no control. It was forward and to the right and she had no idea she was going down, she thought she was still walking! I grabbed her before she hit the ground and asked what happened and she said what do I mean. I said you almost fell. She said oh, I don't know maybe I was a little dizzy. This is the first time I have seen it happen from start to end. The other times she has fallen, I have only noticed when you hear a thud. It is a bit odd. She has always said that she was dizzy after the fall and that is the reason for it happening. I don't think that is the case. From beginning to end she never knew she was going down and a few seconds before hand she said all was ok. I haven't shared this yet with the doctors. I told them today that she falls because she is dizzy. They are trying to figure out why she is getting dizzy, but that is not the case. I don't think she gets dizzy, but blames dizziness because she has no other explanation for us or herself as to the cause. Can your brain just shutdown motor skills at will, but give no advance signs. Signs that can be detected by looking at motor skills? The docs will think I am nuts now when they find out what I seen and what is in my head. They still don't know what to think in the matter and to add to that the fact that she is not dizzy before it happens really will throw them for a loop.

2010-05-27T09:50:00.001-05:00

Mike and Kk are in the clinic right now for labs and exam. She will have a lot of tests this pm. Thank you all for the prayers. We will update you later. Thanks.

Tests coming

2010-05-26T09:16:00.002-05:00

On Thursday we will finally get some peace of mind. Mikayla is scheduled to run a small gamete of tests to see what may or may not be at issue. The tests are focused in on her heart and blood pressure. From our brief discussions with her team that is the area that they want to check first. Her issues still are not major, but the fact that she has issues makes you worry. I think the tests will help our growing concern about her status and has allowed us enough time to prepare for any outcome.

A Little Bit Different

2010-05-21T22:21:00.002-05:00

Last week Mikayla woke on Saturday dizzy and nauseated. At the request of the on call Hem/OC we took her to Kansas City for testing. They pulled a CBC and checked her vitals and wrapped it up by saying monitor her, its probably a virus. Today same thing. I called her NP. The NP confirmed with her BMT Dr. and it was agreed that we need to monitor her. Tonight she gets a nose bleed, not bad, but still it was out of the blue and had not happened since last summer. We call the on call BMT NP, guess what, monitor her. ?@#$#@? When do we quit monitoring and start finding out what the problem is? It could... be a virus. It could... be her heart. It could...., well hell it could be anything from something minor to major. At what point do they actually decide we do or don't have a problem. If you hear a knock in your engine what happens if you ignore it? Maybe it goes away or maybe your engine fails. Are we that different? Wouldn't rather know what is causing the knock, or would you rather take your chances and hope the engine does not fail. That is how I see it. Why wait and see if she has some kind of failure instead why don't we see what the "knock" is. It's probably... blah blah blah. Probably is not good enough and I have voiced that opinion and it fell on deaf ears. I have very very high regards to my BMT team especially my BMT Dr. I don't do anything unless it comes from him directly. If he says monitor I guess we monitor. I just don't like waiting to see what will or will not happen.

2010-05-19T22:58:00.000-05:00

Mikayla

2010-05-19T22:52:00.002-05:00

Well its been about a month since the last post and things are still on the same path. She is doing pretty good. Her skin is starting to blend and her hair is longer than most mens. She is engergetic and cherry.

Birthday Time!!!

2010-03-13T14:31:00.002-06:00

Mikayla will be celebrating her 6th birthday on April 12, 2010. We will have a party on April 9, 2010 around 6pm to celebrate the event. Everyone is invited! Those of you whom have kept up with her progress but have not yet had the opportunity to meet her feel free to come by. The party theme will be kept secret but it will be fun and unique. Please email me at michaelbassett76@yahoo.com for time and location. Hope to see you there.

So much for it being the last post

2010-02-24T15:32:00.002-06:00

The weeks since posting last are still bringing changes. Sometimes as parents major changes make us believe all is well and there is no need for updates. Yesterday Mikayla's bone marrow aspirate netted that she was still Leukemia free and that all her cells have converted to Malachi's. This week we had a dry run at an emergency with her and it was a major fail. Mikayla had against all odds managed to get Roto Virus A. The virus leads to excessive vomiting and diareha. We were told to see if they can pull blood locally and give I.V. fluids. With a few calls all seemed as if it would be ok. After ariving to the hospital we didn't get treatment for over 3 hours. Hygene was a huge issue as well. The nurses kept forgetting gloves and really didn't know how to do what Mikayla needed. We needed blood pulled before IV, but they insisted on doing it the other way around. This left a faulty picture of what was going on and if she was truely dehydrated. To make a long story short if it was a true emergency Mikayla would need to have service (proper service) in the span of an hour or she runs the risk of having fatal consiquences. We have since talked to the ER management and worked up a plan to have what we need in the time frame we need it.

The last post

2010-01-27T14:34:00.002-06:00

First I want to thank everyone who has helped our family along the way. Today, hopefully, will mark the day that our lives return to normal. Mikayla was released to home today with weekly follow-up visits to KC. With this news means that from here on out that Mikayla will be at home baring any fevers or signs of relapse. For the most part we will no longer be updating the blog unless things drastically change. We will be compiling all the posts as well as photos and comments into a book. The blog covered mainly the world of Mikayla through her parents eyes. Our whole family has been through a lot. With support from friends and family, treatments from doctors and nurses we seem to have done alright. Although she has many years left before we can truly say she is cured, we couldn't be more pleased than we are today. We will need time to readjust our lives to fit into our new circumstances. Visits should be held to a minimum as well as outside the house activities. We have come to far just to regress and begin again. Rea and I will take a few more months off before we begin to work again. We plan on going to Disney in April with the help of Make-A-Wish. It is a vacation much deserved for our little girl. We will be finding ways to give hope and insight to others that are just beginning their journey. Plans of volunteering at Children's Mercy and talking to other new AML families is one way we can help. We were blessed to have good friends, families, and a strong supportive community while others may not be so fortunate.

Recent pictures

2010-01-21T12:06:00.008-06:00

Monday Clinic

2010-01-18T21:03:00.003-06:00

We were in clinic from 1:30 to 6 pm. We were the last patient there to leave. Her labs are better , liver enzymes still elevated but better than Thursday's. Hemoglobin , platelet and ANC were down Friday but better today. She is in isolaion when she goes to clinic due to RSV but she is definitely getting better. Praise God!!!! We thank God and you all who are praying for her recovery. Just so blessed for all the positives. Thank you so much. Be back Thurs for labs and exam again. God Bless us all...By theway had a great , quiet birthday weekend for Mike and awesome visit with te kids. Darian excited abouther short haircut...lol See you all next time.

Doing great

2010-01-17T21:30:00.002-06:00

Mikayla is doing well. She tested positive for RSV this week and received an injection to help counter act the virus. Her appointments are now 2 times a week. She has been removed from a few medications. Our path to freedom is growing shorter. There is a small chance that within a few weeks she will be going home and continuing treatments in KC once a week for the rest of the year. For now she remains in KC with her mom out of the need to be close to the hospital for emergencies. Thanks for your thoughts and prayers.

A good week

2010-01-07T23:41:00.003-06:00

Mikyala has been doing really well this week. She hasn't showed any signs or symptoms of being ill. Her appointments haven't turned up anything of too much worry. She did have to give a little bit of extra blood on Monday because her liver showed some elevated levels. Her hair is growing. It looks much the same as a 3 day growth of beard on a man but really soft. She goes into clinic for her second weekly round of tests tomorrow. All seems good except for the frigid temps outside.

Out and doing well

2010-01-02T01:48:00.003-06:00

It's about 2am Saturday morning and Mikayla is sleeping well. In the hospital she would have a difficult time breathing making unusual sounds and always seemed to have a stopped up nose. When she was released on the 30th it was a huge sigh of relief. The past month or so has been a difficult road for the whole family. She was so far down it didn't seem like she would come back. It all went away as fast as it came. Some great discisions by her doctor i believe led us to this day. We will never know what really happened, but as parents we have to do what we can to be sure it doesn't happen again. That includes making hard choices about what meds she is allowed to take and making sure anything new being done has been cleared through our number one doctor first. All is going well right now and we couldn't be more happy as parents to see our family together once again. Our road ahead is still very long and full of uncertainty. We have learned that each day is just that day and that the next will come soon enough.

Kenna

2009-12-31T02:16:00.003-06:00

Kenna Bradley 1996 - 2009 Lawson, Mo.
Lawson, Mo. — Services for Kenna Lee Bradley, 13, Lawson, Mo., will be at 11 a.m. Tuesday at Mellon’s Community Hall in Lawson, Mo. Burial will be in Lawson Cemetery.
Kenna died Tuesday, Dec. 15, 2009, in Kansas City, Mo., after a yearlong battle with AML leukemia.
She was born Feb. 6, 1996, in Kansas City, Kan., the daughter of Kenneth Francis and Rhonda Bradley. She attended Tonganoxie Elementary School and Lawson Middle School. She played softball and was a pitcher.
Survivors include her father and stepmother, Becky Bradley, both of Cleveland, Mo.; her mother and stepfather, Coe Bradley, both of Lawson; grandparents Kenny Bradley Sr., Tonganoxie, and Jackie and Joe Ruble, Ocoee, Fla.; great-grandparents, Henritta Bradley, Kansas City, Kan., and Delbert and Judy Bradley, Lawrence; a stepbrother, Collin Bradley, Cleveland, Mo.; and two half-sisters, Brooklyn Bradley, Cleveland, Mo., and Sammie McDaniels, Tonganoxie.
The family will meet friends from 2 p.m. to 8 p.m. Monday at Mellon’s Community Hall.
The family suggests memorials to the Leukemia Society.
Polley Funeral Home in Lawson, Mo., is in charge of arrangements.

May God hold you close, Kenna you will be missed.

Disconnected from IVs

2009-12-28T12:55:00.003-06:00

Docs were here. Discontinuing TPN and Lipids (supplement nutrition via IV) today. Stopping steroids. IV fluid stopping unless she is not meeting the 48 oz/24 hr requirement. All meds are switched to oral (trial basis). Mikayla is unhooked , watching movie in the bathroom while waiting for housekeeping to clean the room. Thank you God ,thank you family , thank you friends.......thank you for answered prayers...Amen!!!!!!

2009-12-28T10:45:00.002-06:00

Woke her up at 10 am so she can take her medicine. Again ,she threw up yellow bile and asked nurse for meds. Took her meds orally and had a going in her IV. She wanted to go back to bed for now and get up when food gets here.
Waiting for food and rounding doctors/team to get here and tell me what is going on and the plan for this week. Thank you for all the prayers and support.

Happy about her Dora links

2009-12-28T01:13:00.002-06:00

It was mess trying to download Dora Links since Christmas. She was not very happy about the trouble. Finally today Mike figured out and it worked. Mike said , she was very excited and really enjoyed playing. She was unhooked from her IV from 12 nn to 8 pm. IV pain med was disconnected and just as needed, orally. She was able to drink enough without hooking her back to IV fluids. TPN and Lipids will continue until 12 nn. They will give her more oral meds tomorrow and continue to weaning her from her IVs . Had a great day. Prayed for sweet dreams , continuous healing, thanked Him for lots and lots of blessings.......

Christmas 09

2009-12-27T01:53:00.002-06:00

First we would like to apologize for having no update for a while. Between the weather and taking care of things , we got really behind. As far as her skin is concerned , it is looking pretty good. Her skin is healing very well. Thank you for all who prayed for her. As per dermatologists , it is still graft vs host (65%). Bone marrow attending believe it is Stevens Johnsons syndrome. Still not 100% sure what it was. What they say is very hard to distinguish because both are identical under microscope. But for precaution, they will prevent use of drugs who are listed and maybe similar to what can cause the reaction that she had. Mikayla's counts are still looking good. Although they are going down , still within safe level. I was told that due to slowing down to almost stopping steroids, numbers will go down. They will continue to monitor. It makes it hard for us parents when numbers are going down and her primary doc is on vacation. I know we are supposed to trust other doctors but still hard when you see different ones. And each time you get new set of rounding docs , they have to learn Mikayla's case from the beginning. We apply vaseline all over her body at least 2x day to prevent skin from drying and allow flakes to pill easily. So far , her skin looks great.
Christmas was busy. We want to thank all our family and friends, everyone who sent prayers, cards and gifts to us. Thank you. Our friends who came visit and tried to visit , thank you. She complained of abdominal cramps/pain in the last 3-4 days. Threw up as soon as she opened Santa's gift on Christmas day. Tonight the nurse thought that it could be gas from broccoli she consumed in the last 3-4 days. Hmmmmm , maybe just full of air....hehehe. But still overall , we are very thankful for all the blessing we received this Christmas. Ada, Don (our friends driving back to Arkansas and flying back to Florida tomorrow) THANK YOU and be careful . We are so blessed to have all these people who hope with us , fight with us , and Believe with us...Merry Christmas and Thank you so much.

Awesome morning

2009-12-19T13:48:00.003-06:00

Last night, she burst out crying and when I asked her what's the matter, she said "I don't know", so asked her if she is mad, upset about everything and she said"yes" then she reached for a hug and held her all night. I told her, "Baby , it's ok to get mad , upset and cry." And u can yell and cry and mama will be here to hold you. About 2 am my legs are getting numb so I put her back to bed. Then she woke up 6 am wanting food. Cooked rice ans spam (again) ordered chicken (7am) and bacon and ate. This am she sat on the recliner while playing with computer. She also decided she will walk in the room to exercise her legs. Then wanted to sit by the window to paint. After painting , she said she will go back to bed and take a nap. Had 2 packs of swiss rolls, milk and now still napping. Thank you God for this day................

Long week.......

2009-12-19T13:28:00.002-06:00

Tues was debridement and dressing change. She was covered wrapped except face , hands and buttocks. Was in a lot of pain but at least she had anesthesia thru her IV. There was a lot of screaming because of pain/discomfort. They increased pain med. Skin is healing according to the docs.
Wednesday, debridement including face. She was raw on the face , parts of her arms , buttocks and legs. Was told trunk looking really good.
Thurs, back to burn unit for treatment. Got pushed to later slot. No food for 15 hours and no liquid for 7 hrs. Long wait. THis time only arms , top of chest and legs are wrapped. Had active bleeding on her bottom. Skin looked like baby skin specially abdomen area and shoulders. Face still very painful.
Friday, at burn unit for treatment. Instead of 1 pm appointment, was told can do her a
t 11 am. Was rushed to get down but things were not ready. Organization and planning was poor. KK was fine going down but was in so much pain after procedure. Goal was to keep dressing for week end and no dressing change til Monday. PA came to rm later this day and told me that there was diasgreement between depts. In this hopsital what I gathered based on my observation, Burn Unit and Derma Dept don't like each other. Therefore, I was told that Burn U. will do what they want and they don't care what Derma. recommendation as to what maintenance cream to apply. That will put me in between. Paged Dr. Myers , her primary attending and he said , whatever will work for KK is what we are going to use. Still yet to be battled on Mon. We will see!!! Healed areas are looking great. Face and bottom/legs still raw. Still has a lot of pain but she is taking baby steps. So proud of her..........Thank you all for your prayers and support. God Bless us all.

Great Day for Mikayla

2009-12-17T01:02:00.002-06:00

It has been rough the last few days. Mikayla had debridement last Monday midnight. I was very upset. I initially decided I will stay in the room but I had to leave because she started screaming and nurse said would be best if I am not there. I was not happy when they started pilling her skin before full effect of sedation meds. I was upset with the resident and asked her to start making phone call to get some answers because I will not watch my child in that situation. Finally the burn surgeon decided to send the team back and just do self debridement and wrap her. She then felt better. I voiced my frustrations to the docs and other staff. I told them that I felt abandoned , alone and helpless that night. Told them that I felt my BMT team was not there to provide the care my daughter needs. I told them that, regardless of what the dx is of her skin, that she should be treated at optimal comfort and that Children's Mercy failed me. They listened and now so many teams are working on her case. All day Monday was rest day since she did not really fall asleep until almost 7 am. Was in a lot of pain. Tuesday, debridement and dressing change happened in the OR. Was still in a lot of pain and some bleeding both legs and a lot of raw areas. Wednesday, much better. A lot of her skin on Upper body is healed , some healing and legs still raw with bleeding. But everyday , it is getting better. New skin is growing. Almost looks like baby skin.

2009-12-15T10:42:00.002-06:00

This post may jump around a bit, but you should get the overall picture. We still are not 100% sure what is going on with Mikayla. Trying to get an answer has become an unspoken challenge around here. There has been several disciplines of doctors in and out and each has there own opinion. When Mikayla's "rash" started we went to the hospital three days in a row expressing our concerns only to be told that it looks like GVHD and to put cream on it. They finally took us seriously when small blisters began to form on her legs. That was around midnight and the next day everything changed. Her skin began to rapidly transform and withing two days she was covered in red skin with huge blisters. Dermatology was the number one team involved at that point. They really didn't do much besides make Mikayla cry. Mikayla has a synthetic line that comes out of her chest where she receives fluids and medicine called a hicman. Because of the importance of that site wound care treated it. After a few days the site looked great. Not perfect, but compared to the rest of Mikayal's body we couldn't ask for more. So, there began talk that maybe we should treat her body like her hicman site was being treated. Dermatology did not agree. Instead they continued a course of coming in and popping blisters. On Sunday finally somebody put their foot down and things changed. It was agreed that the burn care nurses and doctors would get involved and that dermatology would back off. We were told that the burn team would come in late Sunday and sedate Mikayla and begin to debride her body. Mikayla is at a huge risk for infection so instead of a whirlpool it has to be done manually. They came in and while the nurse was still applying the sedation medicine in her hicman they began to work. Giving no time for the sedation to start its effect of relaxing you. For more than thirty minutes Mikayla endured so much pain her eyes and tongue were bleeding from crying. Very, very cruel act. They only had the heart to do her legs. They muffed the whole thing up. We were not in the room to realize that they proceeded as they did with little concern for her comfort. Rea blew up! She got on to every doctor and nurse that was involved. We got apologies, but that is not what we are after. The conglomerate known as the team decided to change methods. They are supposedly going back through her complete history and trying to dig deep and find out what is the root cause for her condition. Monday Mikayla was given a complete day of rest. Nobody got to poke her. She called during the night and sounded great and her mood was upbeat. Today she will be heading to the O.R. to be put to sleep so that the burn team can begin to extract all her dead skin. Why they didn't do that in the beginning I don't know.

Tuesday through 3

2009-12-11T14:48:00.003-06:00

Today started very well. Our nurse Miss Jenny was able to put some eye drops in her eyes before i woke. I was getting Mikayla up to go to the bathroom and housekeeping popped her head in and asked if it was ok to clean. It was a good time because while there I would freshen her up and treat her skin. They told us it was ok to come out after a few minutes. Mikayla has a pretty tough time getting in and out of bed. Its an air bed about three feet off the ground. We enginered some steps, stools, and a chair to make it easier. Mikayla was at the top of this monstrosity when housekeeping was trying to come back in. I told her we were not ready. I was looking for privacy more than anything. Less than a minute later still trying to get Mikayla into the bed she asked again while popping her head in the room if she could come in and get the bathroom. Out of frustration I told her get it done and turned Mikayla around and set her on the bed. I moved the chair so the girl could get past not realizing Mikayla was on an air bed and that the only thing really holding her was the deflating mattress. When I moved she fell out of the bed on to her feet. It scared the hell out of us both. She was shakin up emotionally and some of her skin was damaged in the process. She took some deep breaths and got the courage to go ahead and try to get back in bed but this time with some assistance from her CNA. Her nurse came back soon after and began to treat her with no problems. She took her time and had a good grasp of when to give breaks and what to say. All was humming along pretty smooth then this horde of beetles known has dermotologist came swarming in. In case you can't tell nobody like them. The bed side manners need some real work as well as their piss poor attitudes. They remind you of snotty high school cheerleaders. Two of them were for sure doctors and the other three really had no business there. Mikayla became frustrated very quickly. It was overwhelming with the crowd hovering. Our nurse took a stand and ran a few of them off. We as parents would love nothing more than to not have to deal with them and do it ourselves. It's always high stress when they come. The poke her for up to a half hour with no emotions. They would rather argue with her than to do what she wants. Mikayla and I talked and we agreed that if the one comes back that poked her leg and made it bleed comes back that I would not let her do anything. When they left Mikayla settled down and enjoyed her 8th Swiss Miss Roll. She has relaxed and been calm for most of the remainder of the time. I got word that they will slow the steroids down and weene her off. As for treatment it looks like will continue much of the same course as now. There is a lot of roosters in the hen house and conflicts though slight exist between them as what to do. In the end only one opinion for treatment is all that matters and that is the opinion of her transplant doctor. She is finding ways do deal with different situations. For example her tounge burns when she eats so she has found that q-tips pressed at the point of the burn makes her tounge feel better. She is couragous and inventive.

GVHD and progress

2009-12-10T20:48:00.003-06:00

Where to start? We are still being told GVHD. Our doctor says that Mikayla's case is similar to cases before special transplant drugs like Tacrolimus were around. The Tacro is supposed to prevent this type of GVHD from happening. Who knows maybe we got a bad bottle of the stuff cause it ain't doing it's job. She is considered a severe case. I won't go into detail about how she looks anymore because it's kind of a pointless thing to do. It has settled down a bit. The previous "bad" spots are changing and the old "good" spots are starting to look like the previous bad spots. Kind of confusing. It is like everything wants or needs to break out to a peak before it tapers off. We don't know if this will happen again. One thing that is hopeful is that where the new skin is that skin looks good in color. To my eyes it looks very painful, but Mikayla is doing well with the pain. I think the Dr. has the right mixture of pain drugs to keep her comfortable. Her steroids make her have extreme moods. She is very vocal when she wants things. Most of it is from being scared and some is from the pain. We can not have any visitors for some time to come. Mikaylas Christmas will be spent here in the hospital. We will do the best we can to make sure that she gets everything from santa that she requested. We did get two really solid pieces of good news amongst what is happening now. Mikayla still only has GVHD in the skin and not the GI tract or liver. The other tidbit that really gives us hope is that Mikayla is cancer free. Our road so far has been long with a lot of good times. For the most part she has sailed right through the cancer. The GVHD is by far giving us more fear than the cancer ever had. I think its just a visual thing. You couldn't see the cancer and somehow it wasn't as real as what is going on now. She is asleep finally. Most of her day today was spent yelling at doctors and nurses. I hope nobody takes it to heart because underneath that grumpy facad is still the same sweet Mikayla that most have come to enjoy.

Graph Vs. Host Disease

2009-12-08T21:49:00.003-06:00

The results of the biopsy are not yet in, but from what all the doctors are saying Mikayla has GVHD (graph vs. host disease). Acute GVHD is graded in 5 steps from 0-IV based on involvement of the skin, liver, and GI tract. Grade 0 indicates no clinical evidence of disease. Grades I-IV are graded functionally. Grade I indicates rash on less than 50% of skin and no gut or liver involvement. Grade II indicates rash covering more than 50% of skin, bilirubin level of 2-3 mg/dL, diarrhea of 10-15 mL/kg/d, or persistent nausea. Grade III or IV indicates generalized erythroderma with bullous formation, bilirubin level of more than 3 mg/dL, or diarrhea of more than 16 mL/kg/d. Mikayla is not spot on in one grade. Her skin is in the grade III catagory, but other symptoms are not there. Her liver and GI are still checking out fine. Grade III also states that nearly 100% of her skin is covered and Mikayla is maybe around 80%. She is on a constant drip of Morphine and other drugs that help stop the process of the GVHD. It is a scary situation. Infection as always is a great concern. If the GVHD stops and infection is avoided we should come out of things ok. If GVHD begins to attack the GI and liver it gets very complicated. We are still in the early stages and trying together with the teams of doctors to grasp what is happening. We have pried as much info as we can from the doctors, but I think that we have to wait on the biopsy to get better answers. Her treatment is very aggressive and should help. The only other cause for this would be that of an allergic reaction to medicine. All though it is the unlikely culprit it is still something that maybe the root of the cause. Mikayla has been a trooper. Even though she is covered in what looks to be 3rd degree burns she is carring on with herself much as she always does.

2009-12-06T20:01:00.001-06:00

Mikayla was admitted back to the hospital around 12 in the morning. Her rash had began to blister and consume all her skin except her face. More info Monday.

Ist Out Patient visit

2009-12-02T08:17:00.001-06:00

It's a cold am in KC. KK had spam and rice, choc milk for breakfast @ 6:45 am. She can't have anything but clear liquid from 7 to 11 am. Clinic , LP/Bone marrow aspirate today. Pretty much all day in the hosp for out pt visit. Rashes in her body getting worse, hoping it is ok. A little GVHD is ok but not a lot. What is a little and a lot is something I am not certain.Will know more today. God bless, Amen..We will post details of today's visit later. Thank you.....................

Christmas Lights

2009-12-01T23:16:00.002-06:00

All day today Mikayla asked to go see "Christmas in the Park". It's a trail of Christmas lights in the Lee Summit area. The day wore on and I told her we would have to do it another day around 8:00pm. She seemed down so I told her come on get dressed we will go as soon as you're ready. We arrived there around 9:30pm. She enjoyed it and it was the first time she has done something she wanted in a long time. She has to wake up early tomorrow because she has clinics tomorrow to undergo some tests. One of the tests is a bone marrow aspirate. Her blood counts are really good and the results of the aspirate should come out favorable. When we left the hospital she had a bit of Graph vs Host. My intelligence level on the subject isn't that great so we will update next time with what it means and how good or bad it is. She has done well in the short amount of time she has been out. She is eating and drinking well. She walks around more and plays with her brothers and sister. Taking her medicine is still a chore for her though. Sometimes she does it fast and others it takes up to an hour to get it all in. All and all she is doing very well and continues to get better all the time.

RELEASED

2009-11-30T13:50:00.002-06:00

Today is a big day! Mikayla is released from the hospital. It is a big milestone in her treatment and re-socialization into society. She will spend a few months close to the hospital for careful observation and routine treatments. When the doctors are comfortable they will release her back home with check-ups and treatments on a bi-weekly to monthly rotation here in Kansas City. This is something we will have to do for about the next 5 years or so. Public outings will have to wait, but the joy of not having to see her in a hospital environment is unmeasurable. Our road ahead is still chalked full of uncertainty. Mikayla will always face the prospect of relapse and infections due to a weakened immune system. Risks of other cancers and complications from radiation, chemo, and transplant will diminish with time. Our lives will slowly fall back into place and Mikayla will gradually become "normal" once again. She is looking forward to being out of the hospital. With less than a month to go until the older kids are put back into school Mikayla is making fast progress and may end up coming back to her house when her brother and sister do. We have to thank many people for their support, but above all I want to thank her doctors, nurses, CAs, and Malachi. These are the folks that done everything needed to get us to the point we are today. We as a family will always be indebted to them for their wise choices and excellent knowledge in fighting her cancer.

2009-11-27T11:54:00.002-06:00

Mikayla's immune system is rapidly rising. She has been given a hormone type drug that is like a power boost to get her transplanted stem cells to work in overdrive. Her ANC (a number that gives us an idea of how well she can fight infection) has climbed from 40 to 400 to 700 and now resides around 900. The doctors would like her to sustain around 1500 for 2 days before taking her off the medicine. Mikayla has what seems like allergies, but the doctors are not overly concerned and explained that the air here is really dry and may be the cause. She is becoming more and more active. Outside of having a bald head you probably couldn't tell she ever had any problems. She is still fun, moody, and bossy. We are looking forward to tranfering to the Ronald McDonald House on Monday. We will remain there for the rest of her treatments or until around March coming to the hospital only for clinics and fevers. During this time we start to get a handle on being the parents again with the hospital acting as our crutch. Can't wait!

So thankful for so many things..........

2009-11-24T00:22:00.002-06:00

Mikayla is off IV machines. She will be taking all meds orally tomorrow. She is doing so good. God has been showering us with so many blessings. I am so thankful for my family, my husband Mike , our kids, Damien, Darian, Mikayla and Malachi. So thankful for all our family/families and friends. I am thankful for the strength, wisdom, courage, love, patience , everything that I receive every day. Thankful for the doctors , nurses, CAs and all the medical and non medical team who take care of my daughter. Thank you to the parents who share the same hope ....who are fighting for their children.... I am so thankful for so many things....Thank you God for all these..........

Saturday Siblings

2009-11-21T16:39:00.003-06:00

On a normal day here in BMT Mikayla wakes around noon. Relying on routine I decided that I would stay up late and get things done which included overhauling her blog. I had just fallen to sleep around 3:30 or 4:00am and was woken up by Mikayla needing to go to the bathroom. I looked at the clock and it was two minutes until six. When she was finished she wanted to watch TV. I said no that she needed to go back to bed and she said NO!!! I am staying awake cause Kuya and Sissy are coming. Today the ban on sibling visitation was lifted giving way to a spark of happiness for Mikayla. It is rough on her sometimes not being able to see her brothers and sister. Today she has been a totally different person. The person or persons that instated that dumbass ban in the first place must not understand what a child here has to go through. After seeing how Mikayla was yesterday compared to today I would love to be able to tell them "told ya so". It's a battle for the whole family and it just isn't fair to make a child go at it without her entire supporting cast. So for now, or at least through the holidays Mikayla's emotional healing will be in full swing. Doctors, nurses,ca's, and medicine can only do so much to heal a person the rest is up to us as family to give her the emotional support needed to complete her journey.

pictures from the last 3 weeks

2009-11-20T21:54:00.000-06:00

pictures from this week

2009-11-20T21:42:00.002-06:00

Pictures

2009-11-20T20:20:00.000-06:00

Sorry for the delay. We are having trouble trying to find a way to put the pictures online. Sometime tonight we will put up quite a bit.

2009-11-20T13:07:00.000-06:00

Malachi's cells are engrafting...she has 10 ANC as of today from 0 yesterday...God is good...Thank you all for praying , hoping and believing with us.....We will give you more details later in the day.

bmt update

2009-11-19T14:53:00.003-06:00

Things so far have been progressing right on target. She has had minor complications do to mucusitis. On Saturday they are lifting the sibling ban at the hospital which will allow her to see her brothers and sister for the first time in about 3 weeks. Her transplant has yet to show signs that it has worked. The doctor said in around a week or two we will start to see the change happen.

Bone Marrow Transplant

2009-11-10T22:17:00.002-06:00

Today our long dreaded transplant took place with a series of events that will continue to play out over the next 100 days or so. It all began with Malachi. This morning around 6am we took him in for surgery to harvest his stem cells. This surgery is kind of gruesome so do a google search if you are interested in what happened. Malachi came out of surgery with somewhat of a hangover that lasted around two hours before he became his self and began walking and talking again. Shortly before he woke they began placing his stem cells into Mikayla. With stress at it's max and imaginations running wild we expected the worse and seem to have come out with the best. Mikayla's body did not react in a fashion that would scare even the most timid of us. It was a huge monkey off of my back. Now that the stem cells are in we will continue to monitor Mikayla for a host of infections, difficulties, and reactions as her journey to 100 continues. Towards the end of this week her body will begin to react towards the many journeys she completed this week. Her chemo and radiation is just now starting to affect her mucus linings making her sick similar to eating bad food and feeling bloated with sinus infections. The stem cells will begin the task of breaking down her old cells and creating new healthy cells. Many things can go wrong and many things can go right in the next few weeks before concerns of damage from this week die down. We will continue to try to keep things up to date and keep everyone informed of the many highs and lows that are still left for our family to face. Thank you all

My Children makes me whole......

2009-11-09T08:52:00.000-06:00

Thank you to all of you. My family is so blessed knowing that we are so cared for. All my family and friends all over the world are praying , hoping and believing with us. We often ask, why things happen the way they do, but we seldom stop and look around and the answer is just right there in front of you. My kids complete me..and when i see them hurt, I feel like breaking.. coming apart...but I remember the LOVE that completes us all and I am whole again. I ask , how many times can ur heart break until its done breaking...then I look at my kids my family and there is my answer....IT WILL NOT BREAK!!!!!!!!

Chemo is done

2009-11-09T08:34:00.002-06:00

Chemo is done. She got sick few times but more yesterday. Her meds are given through her line except for 1. She will have NG tube put in today. This will help her get nutrition specially on days she is not getting anything by mouth and when mucositis hits her bad. Today besides NG tube , is mainly rest day. She will be done with having to go pee every 2 hours by 10:45 am. They had to make sure to goes to bathroom every 2 hours since Saturday due to the chemo drug risks to the bladder. Now we wait for tomorrow, the date of transplant. What I was told is Malachi goes in at 6:30 am to the O.R. , 2-3 doctors will do the procedure/harvest. He weighs 10.2 kilos , they will extract about 20 ml of bonemarrow per kilo of his weight. He will be taking iron sup. for next 8 weeks. After it's extracted , they take it to the lab, will take 6 hours because Malachi's blood type is different but that is not a problem. What will happen is Mikayla instead of being O+ after transplant she will become A+ like Malachi. Then we wait for Malachi's bone marrow to take over. Since they are siblings the risk of graft versus host is less. But we still hope that Malachi's cells don't think that Mikayla's body is an enemy and fight.
THis is what I have for now. Thank you for all your prayers and support. Thank you Lord for everything.

Radiation complete

2009-11-07T19:07:00.002-06:00

Radiation was completed yesterday and her chemo started that evening. Overall I think she done pretty good. A little bit of belly sickness and some headaches. The chemo she took made her blood pressure go crazy. Along with the chemo she takes a pretty sizable portion of IV fluids. This is causing her to gain weight at around a pound a day. She looks like a rolly pollie. Currently she is watching daddy day care and eating ramen noodles.

Radiation

2009-11-05T08:33:00.007-06:00

Mikayla started her radiation yesterday. She done a pretty good job at staying brave and still while the procedure was completed. You will see that in the pictures it looks pretty scary even for an adult. She is sitting on a bicycle seat holding onto 2 handles. She had to remain like that for about an hour each time. Yesterday she had 2 rounds of radiation and today she will undergo one. During the night she was extremely sleepy and complained of her ear hurting as well as bad headaches. Oxycodone was used to subdue the headache and worked really well. We have an option for morphine if the oxycondone fails to offer her relief. Friday will be her last round and then she starts with something a bit more familiar to her which is chemo. It's a different type, but she can handle that pretty well.

What a week it has turned out to be

2009-11-02T17:13:00.002-06:00

I don't really like to complain or talk about things outside of relevance to Mikayla, but today is an exception. With a show of hands how many of you out there that are reading this have ever had a child put to sleep? Great, now how many of you have had all your children put to sleep in the same week? That's a bit harder to swallow. This week came out of nowhere to catch us by surprise. Starting with Mikayla, she was put to sleep last Friday to examine her bone marrow to see if the Leukemia was still in remission. Thankfully the results were in our favor and came out clear. Next is Damien. He had an orthopedic exam of his broken wrist and they said that this Friday most likely they would have to put him to sleep to insert a rod into his wrist to help correct the damage. Next out of nowhere was Darian. She developed some kind of staph type infection on the back of her leg and had to be put to sleep today to have it surgically removed. Last but not least is my big boy Malachi. Poor guy has to be put to sleep to donate bone marrow to his sister Mikayla. Insurance has got to love us and God I think is pissed at us. Really it's incredibly wierd that as a snow ball starts rolling down hill it begins to get bigger and bigger until it breaks apart. I am hoping my families snowball has made it completly down the hill. Now enough whinning. Mikayla gets admitted to the hospital tomorrow. Her radiation treatment will start right away. Malachi has to give more blood beyond what they have already taken because they screwed up some tests. Idiots. Tomorrow through Friday is frankly gonna suck. Since being diagnosed I have dreaded this day. Add to that the fact that the other two children are now patients makes one wonder what in the world they done to make life go downhill so rapidly. Guess we still have our friends, family, and each other and things could be way worse. Thank you all for your support.

Needles

2009-10-29T16:40:00.002-05:00

Today started well and ended up in the dumps. Mikayla had about a 2 and 1/2 hour mental evaluation. Test results will be back around Wed. next week. Malachi had to go get blood drawn again. During the draws Malachi's vein blew on 3 separate occasions before they sought the help of a vascular team. The vascular team tried two times before they were successful. He screamed the whole time like he was in pain and it was very difficult to deal with. That should do it this week for their tests. Friday we take Damien to Orthopedics to get his arm examined to see if his wrist is re-aligned. Malachi and Mikayla are doing well right now. Both are playing and eating as if it was all just a routine event. It's amazing how easily kids forget.

Testing begins

2009-10-28T19:44:00.003-05:00

Today was the beginning of testing for bone marrow transplant. Malachi had blood taken and an EKG. Mikayla had a bone marrow apirate and a lumbar puncture. While there she had blood drawn and received a plasma transfusion. Yesterday she went to the Kansas City Cancer Center to be measured for a suit she will wear during her radiation treatment. They both seemed to take it well with little problems. Tomorrow will consist of another blood draw from Malachi and Mikayla will meet with a behavior specialist to make sure she is mentally ready.

At home for a very brief break until BMT

2009-10-24T00:31:00.002-05:00

It's late Friday night here at home and Mikayla is resting after a rough last hour or so. She is much better now after taking nausea medicine. Everyone has managed to catch a vacation from the hospital until October 27. It's a short unplanned break, but we will take it. Her first day back she was very excited and active. Today was a little bit less than exciting for her. She complained most of the day about a belly ache, but refused to take the medicine that would make it stop and thus ended up getting sick before the day was up. We still have a long weekend ahead before we all transfer to Kansas City for her BMT. Tomorrow Damien and I will take part in a fundraiser for Mikayla at Landreth Park. It's an intimidating 5k walk/run. I would love to see you all there. Take care and God bless.

Mikayla missed her brothers and sister

2009-10-20T11:00:00.002-05:00

Mikayla is missing brothers and sister. Mike still fixing computer issue so she can see them online. She asked for them everyday. It is very hard for her and me but we try to re channel our attention to something else or we will just be sad all day. That is not cool. Still no fever and hopefully it stays that way. She still has the cough but I am hoping it will go away before transplant. BMT nurse was here this morning and said the transplant will be delayed a week due to the flu. She will have vision test, more labs , developmental test and spinal tap before the transplant to get baseline. Malachi will also have some tests but don't know when. May go home for a break but it will all depend on the team decision and consideration of what happened since last Saturday when we found out she is positive for Type A flu. Since she has the flu , she cannot have school here, she cannot be with child life person, but they are able to bring art and crafts stuff for her to do and movies to watch. Things may not always look good at first but without a doubt it will be better. It will be good. Our family and friends have been praying and supporting Mikayla and her fight from the beginning. She became strong in all aspects because God was listening. We all became stronger , better people because of this. We will continue to fight whatever we encounter along the way. We will continue to hope , believe and pray... Because nothing..I mean nothing is impossible if God is in our life.............

Cant seem to find a title for this...

2009-10-18T23:57:00.002-05:00

Mike and kids are in Ronald Mcdonald House. We switched places today so MIke can see Mikayla and I can see the other kids. Damien and Darian are well. We acted goofy, danced and took them to get sonic's chicken fingers + drink and ice cream. Malachi on the other hand, was not wanting to eat, tried everything, cried constantly , having hard time going to bathroom and seem to be tired. The poor boy is exhausted...maybe stressed..I hate the policy..I hate isolation..I know this will get better but all i can say is I hate the fact that Mikayla is crying , can't see her brothers and sister. I am crying because my kids are stressing, my husband is stressing.. I just miss my family. But I know we will beat this . We are going be so strong there is nothing that can take us down. God will bless us with so much love , strength , hope , that no matter what happens we will always be together..And tomorrow will be a better day ....

I hate flu..........

2009-10-17T21:11:00.003-05:00

Malachi is better, fever free since midnight last night. Mikayla's cough was getting worse. Found out this morning she caught a Type A flu. Broke my heart. It made me feel really upset. I asked the nurse, "Why is it that no matter how much I try to prevent my kids from getting sick , then something like this will happen." The hospital started a new rule today, no siblings or visitors below 18 is allowed to enter the hospital. The doctors, nurses and child life thought they can do something for us. Child life asked them that since Malachi basically lives here that he gets to stay as long as he is not sick. The other kids will still see Mikayla but in Ronald Mcdonald House. Her doctor will give her a day pass to go to RMcD house as long as she is feeling good and stable. Now since she caught a flu, Malachi cannot come up , and she can't be out of hospital even on a pass. Still don't know how it will affect bone marrow transplant. I am hoping that she does not develop Pneumonia and that she responds well to the flu medicine. Doctor said ,it is never good to get a flu for anybody but for her , it is better to catch it now and they are able to take care of it easier than if she would have caught it during prep chemo for BMT and during bone marrow transplant(BMT). Right now she has a little bit of immune system versus on bone marrow transplant it will be nothing (zero). But I will not lose hope, she will be fine..she will get over this stinking flu and we will go to transplant....thank you for your prayers and support...........

What an eventful day.....

2009-10-16T10:48:00.003-05:00

Thursday we were told that pathology is back and there is no Leukemia in her bone marrow,,,YIPEE SHE IS IN REMISSION!!! Thank you God...Excitement is over flowing every where. Even nurses and CAs came to the room , so happy about the result. I sent text message to everyone I know. Mike did the same thing. We are on our way to bone marrow transplant.SOON!!! Malachi and Mikayla will be having some tests before the procedure.
Mike had to pick up Malachi because he was not feeling well. He was teething (finally) and was running a fever. So he cannot be around Mikayla. But when they got home , he was having more trouble, including breathing. Mike took him to emergency room so he can be further evaluated. He was running 104.1 temp. McCune Brooke Hospital in Carthage ,MO is as close as Freeman Hosp from where we live. Mike said it was quiet there last night so Malachi was seen right away. Negative for flu, neg for RSV, neg x-ray , waiting for strep result. Fever was down so they went home. Thank God he is ok. So hard to be away. I know without a doubt Mike will be fine with the kids but as a mom , it was hard not being with them. Mikayla was worried about Malachi. Damien and Darian were with them in the ER. It was past 12 am and Damien has a test Friday. Kids are going to be tired all day today. Malachi cannot be around Mikayla until he is symptom free for at least 24 hours. So we don't know if they will be here tonight. Hospital will have a new rule effective Oct. 17. NOBODY UNDER 18 allowed to enter hospital except the parent of the patient. We are trying to see if they can arrange something for MIkayla who is a long term patient.
I know that everything will work out. Everyone is praying for her. All our friends and family never stop praying ... hoping... believing....and fighting with us. I know that God will continue to heal her and take care of my family.
I posted something in face book yesterday. This is just one of the things I learned from this experience. I know you will find this true because I did... WE TRY SO HARD TO CHANGE OUR LIVES , WHEN LIFE ITSELF WILL CHANGE YOU...........
Again thank you for never ending prayer and support. Our family is so grateful and blessed.

Cause for a celebration

2009-10-14T23:04:00.003-05:00

Today preliminary results show that Mikayla's Leukemia is in remission. Now I know that I am jumping the gun, but damn it, it has been a long road to get to this point. Until your faced with this in your life you could not imagine what kind of relief it is if only even for a day that you can believe in faith and that there is hope out there. Without taking to much risk of jinxing myself enjoy the tunes and have a great night.

Changes coming this week.

2009-10-12T16:42:00.002-05:00

Well this week will be hell week. Lots of things to do and lots of things that will change. Going into the week we are expecting Mikayla to get a bone marrow aspirate to determine if the Leukemia has went into remission and by the way her CBC (complete blood counts) look I believe it will be found out that she is. In that case things will changer really rapidly. Both her and her brother Malachi will move to the transplant center. Malachi will undergo some tests. Mikayla will be getting radiation treatment as well as a stronger form of chemo than she has taken previously to prepare for the transplant. On the home front I will be preparing the kids for a move to Kansas City. It's not something they are looking forward to, but I believe it will be the correct thing to do. We are working out two options. One is home school and the other Catholic school. It's a work in progress and the outcome is not set in stone. Our biggest concern in this crucial stage is for Mikayla to stay healthy and away from viruses such as the flu. Today that concern just went through the roof. After spending and entire weekend with Mikayla both Damien and Darian seem to have flu like symptoms. They received a flu shot last week so I am hoping that it is connected somehow. As time goes by this week we will see. I will keep separation as long as I can to determine what is the matter. Wednesday we will know more of how things are gonna change.

Great time with kids

2009-10-11T15:15:00.003-05:00

We switched places this weekend. Although we are still in the hosp room during the day, at night Mike stayed with Mikayla and I was with the other kids at RMHouse. Spent all day Saturday with Damien and Darian in Oak Park Mall. We just walked around; got a book at Barnes & Noble ; ate cinnamon sugar pretzel; then walked around; got a game; Darian rode merry go round; bought a couple of things ; then ate and had ice cream in the food court; lost my phone in the book store but got it back...GAve kids $20 to spend. Next thing you know its 8:15 pm . It was time to go back and try to make it back to the hospital before 9. Have not been with the older kids in a public place that long. HAd a great time . Damien suggested we need to do this once a month.
Sunday is football day , KC Chiefs vs Dallas Cowboys. You all know who won. Well , KC almost won except they forgot to score at overtime. Ok Ill cut this short, still have to go the store,Mikayla needs some stuff, brrrrr... Thank you for the prayers and support... Great weekend..

Support

2009-10-09T13:15:00.002-05:00

We as a family are more fortunate than others. Cancer in children is a very hard matter to deal with, but the support group we have is out of this world. From day one people have been drawn to help us in anyway they can. We have had people organizing fundraising to help with expenses who do not expect anything in return. We have had donations from all over the country from people we barely know. Simple things that become major tasks such as mowing a lawn has been done by anonymous people volunteering their day to help. Everyday people give us words of encouragement that seem to touch our spirit and ensure everything will be ok. All of which are selfless acts of support for our family and little girl Mikayla. I want to take time to thank you all. To thank you for your love, your hope, and your prayers. May God bless you all.

Wednesday

2009-10-08T03:36:00.003-05:00

Mikayla was still in pain. She complained of stomach pain and cried after bowel movement due to pain in her bottom. I have asked nurse to possibly get her something for acid reflux. She tried to swallow zantac pill but did not work. So we had to go to liquid form but she almost threw up. It helped for breakfast but she did not ask for it at lunch time. Instead she asked for nausea medicine and pain med. All she ate for last 3 meals since Tues was few bites of spaghetti and broccoli. She ate better for supper with little complaint until its time for bowel movement. For last 3 days she has been crying everytime to goes to bathroom regardless her stool is soft. She doubles up and in tears during and after mostly after she poops. Resident assessed her the night before and the following morning and sees no tear from outside but I know there is something wrong inside because she should not be experiencing that kind of pain. Again I asked diff nurse to please check with the docs. I was so frustrated. I felt like it was up to me to figure out what medicine will work or what test to administer. Nurse paged the resident and was told ,that it will be discussed tomorrow with rest of the docs and possibly CT scan. The severe pain goes away after 15 min. I cannot stand it when my kids are in pain and there is nothing I can do. I wanted to cry with her when she hurts but I have to be stronger so she does not get scared. I have to assure her that it will be ok and we will find something to help her. Malachi was not too happy either. Did not want to eat much. Spits everything except fresh strawberries and grapes. Worried he is not getting enough protein and iron. He did better for supper as well, but been a cry baby all day. What a day !!! But its ok and its going to be better.
On the other hand, she is looking forward to Friday. She learned a couple of rubber band and paper clip tricks this afternoon during a magic show in the play room. She cannot wait to show Daddy , Kuya and sissy. Mike and Damien told her via oovoo that they will be here early that day since there is no football practice and Mike will even pick them up by 2:45 from school so they should be here before 6 pm. By the way Darian's hair looks good for picture day. She is excited. Mike is feeling better compared to Tues. Damien's grade in English/Language Arts is better.
Thank you very much for all the prayers and support. God Bless us all.....

Tuesday so far

2009-10-06T15:22:00.002-05:00

Since last night Mikayla has developed a cringing type pain in her belly and is refusing to eat. I went and seen her today and she was acting as if she was scared. She had nurses in the room and her mom all trying to make her eat. I sat beside her as I entered trying to see what was going on and the nurses began hooking up a appetite stimulant. After a little pep talk and some advice about eating she ate a ham sandwich for me. I told her the pain goes away if you eat and that it will stay away as long as you eat foods like ice cream and sandwiches. Sometimes we try to explain about the feeding tubes and how it is better if she ate instead of having one inserted. I think that scares her too much now. She wants to eat, but is scared her pain will worsen. There is a fine line between scaring her into eating and letting her know she is capable of doing it on her own.

Over the weekend until now

2009-10-05T18:44:00.003-05:00

Sorry, we are getting so lazy on the blog. When we forget to update we hear about it fairly quickly. Saturday and Sunday was a lot of just us hanging out. We watched movies and talked. Mikayla seemed pretty good. No major issues. Without jinxing us I am proud of Mikyala. Her blood counts so far are still showing negative for blasts. Blasts are good indicators for Leukemia. Her counts are all low, but with some divine intervention things will proceed down the correct path. If all stays the course we should be getting ready for her transplant by the end of October. It is going to be a rough experience. She will get a round of chemo and 4 full body radiation courses before the transplant. The chemo itself we are told is really mean. I personally have heard nothing but bad from people about radiation therapy. The levels which what they treat her with are stronger than xrays, but about 1/4th of what they would put to say a brain tumor. We are currently studing to determine if the choices ahead are the correct ones or not. We want to do all we can, but we don't want to cross the line and do more damage then she can withstand. Any comments or experience in this matter we would love to hear from you. As always my family would like to thank everyone that is supporting Mikayla and her family on our difficult journey.

Thank you ....

2009-10-02T23:34:00.003-05:00

Just want to say thank you Becky for the cake. To those who offered I want to say thank you. You are all so sweet. I have always picked up the kids 1st bday cake.I can't leave Mikayla and of course driving with Malachi alone and knowing he will cry and scream, I was not able to do it this time. Again thank you..............
So, today Mikayla was excited of course because it is Friday. She did not feel very well after breakfast. She threw up and did not feel right all am. She complained of stomach ache before lunch and really did not want to eat anything. I asked the nurse for benadryl which knocked her out. She slept for three hours. Woke up and felt better. She was glad to have that rest so when Damien, Darian and Daddy get here she can stay up late. Things worked out. She was a different person when they all got here. She even ate better and had seconds. Smiled, giggled , played and prayed together. Mike was tired but he made sure Malachi is asleep before they go to RMcdonald house.
Have a nice night and God Bless us all....

Malachi is Big 1

2009-10-02T00:20:00.002-05:00

Yes my Malachi is 1 yo. Thank you Lord for this gift. Mikayla is so excited. She tells everyone to do the Bday cha cha song for him when they come to work. Mike told me last night that a lady he went to school with is having a bakery in Kansas City deliver cake today. Thank you so much. That is so thoughtful of you. Even my friends in Joplin area are wanting to help me celebrate his bday at home. But I just can't celebrate without the whole family anymore. Mikayla and I missed Damien's bday party this summer . People have been so nice to us. We praise the Lord for all these blessings, all our friends and family praying and supporting us non stop. Everyone who follows the blog, thank you.
We will wait for Mike , Damien and Darian and celebrate Malachi's 1st bday ..... Again Thank you to all . God Bless.............rea

Belly ache.....

2009-09-30T23:10:00.002-05:00

Tonight she complained of her belly hurting. She does not like to take medicine by mouth , so when she complains of pain and asks for medicine, I know she is hurting. She also said, it's about 9/10 pain. I called the nurse and asked for the night resident to come and assess her. He evaluated her and said that it can be just from chemo or the loose stool that she had which is also from chemo. They will monitor, and he understands that parents know their kids more than the docs, that to make sure I notify the nurse for anything outside ordinary. I promised Mikayla , I wil sleep in the rocking chair between Malachi and her so I will hear her right away if she needs me.
Mikayla very excited that her brother, Malachi will turn 1 this Friday, Oct. 2, 2009. She told everyone she talked to , that Malachi will have his bday this week. Will buy a cake , just don't know how , but I will get one and celebrate in the hospital. Mike and 2 older kids will be here that night. I want to thank the Lord for giving us Malachi ... oh gosh ,I cannot stop crying, ......... The Lord gave us Mikayla's match.... We are so blessed...God is so so good....Thank you ....

Last Day of Chemo

2009-09-30T16:34:00.002-05:00

Sorry if we haven't updated the blog. Today, WEDNESDAY is is last day of her chemo (third course), yipee!!!!! Tomorrow starts counts recovery. We will be here at least until the 28th day from Saptember 23, 2009. She will have bone marrow aspiration approx. 28th day and we will know leukemia blast. We are praying and hoping that she goes in remission, then on our way to bone marrow transplant. We will meet with the bone marrow transplant team tomorrow at 11 am and discuss details of the procedure. She is looking good, had a hair cut last night. Again , anything is possible ... we believe in miracles... our Faith in God makes everything possible. Your prayers and never ending support keeps us going. God is good .... Fight Mikayla !! Fight!!
GOD BLESS US ALL.....

Sunday into Monday

2009-09-28T15:38:00.002-05:00

Saturday overnight Mikayla had a fever. This excluded her from the play room all day Sunday. Sunday was more just hanging out doing fun things like board games and telling stories. Make-A-Wish came in to do an interview, but neither one of us knew really what to do, because Mikayla bounces back from healthy to just ok. Sunday was time to leave day and it went pretty well this time. With the addition of the webcam she felt more at ease. Monday she attended her "school". We have set an appointment with the bone marrow transplant team on Thursday to discuss all things related to the transplant. This is the meeting where we will be able to better understand a time frame as well as the procedure itself and what to expect. Her chemo is going well. We have just a few more days to go. So far from her CBCs she seems to be on the right track.

Having a good time hanging out

2009-09-26T23:46:00.003-05:00

This is the first time since being here when Mikayla was not sick that she didn't go to the playroom. She wanted to stay in the room and visit with her family instead. Today was an ok day for the most part. Towards the end she started trying to have a fever. When I left it was right under the mark to be considered a fever or not. Unlike before I think the chemo is making her sick. She handles it well and after she is done goes about her business as if nothing had happened. Today went really fast. We discovered we could now use a webcam to communicate back and forth from home. That is a major deal. I have been working on that since July. We talked a lot today about nothing really at all just general stuff like farts, hair, school, etc. She watched Honey We Shrunk the Kids. She has gained some weight. I think she is bigger now then she has been at any point in her life. She discovered that a present the "toothfairy" umm Devine sent had a multi-colored pencil. She was so excited and had to show everyone that it wrote in two colors at the same time. We played the operation game and she swears that even though it buzzes that she still wins. All and all a very good day.

Treatment

2009-09-24T08:27:00.002-05:00

Yesterday Mikayla began her 3rd round of chemo. We of course haven't spoken to her doctor yet, but we have spoken with his RN. Mikayla gets ARA-c for 24 hours a day for 7 days as well as 2 of the for wonder drugs spoken about in earlier posts. I am terrible with names so I will update later about their names and more information about what the risks of the drugs are. She is doing well so far with the medicine. If she doesn't achieve remission then we will undergo one last round of chemo before we end up in bone marrow transplant. If remission is achieved then we will go to BMT right after we finish.

Break coming to an end.

2009-09-20T22:11:00.003-05:00

Mikayla's brief break from the hospital is coming to an end. We ended up getting close to a week and a half of great time off from the hospital. For the last few days we spent it here in KC at the Ronald McDonald house. On Friday she recieved another bone marrow aspirate to determine her Leukemia count and it came back as being at 61%. Her last scan said the Leukemia was at 16%. Tomorrow she will be admitted back to the hospital for treatments. She will recieve chemo and a promising new drug that is still considered to be experimental for the treatment of her cancer. Mikayla keeps baffeling the doctors. Her type of Leukemia should be considered fairly straight forward as far as treatment goes, but it has been quite the opposite. Our doctor is the number one man for the job, but she has presented him with a huge challange of getting her body under control. Over the next 28 days or so she will continue to recieve chemo and the drugs noted above. What happens after this stage is still a mystery. Originally we were supposed to go in for a bone marrow transplant at the end of the cycle, but now we are going to be facing mutiple forks in the road and the direction we take can only be determined by the way her body responds over this time frame. Outward apperance and actions don't really indicate she is getting worse. When you talk to her she always says she feels great. It again seems to be yet another challange we are facing in a very long road of challanges ahead. Mikayla at least doesn't seem to be affected by any of this. She carries on as if nothing is the matter. She doesn't really know that she is brave, but as most of you know as well as I do, she is one of the bravest little people I know.

sorry been very busy here are some updated photos

2009-09-19T17:41:00.001-05:00

Going Home

2009-09-11T00:44:00.002-05:00

Today was a big day. We got to bring Mikayla home for a week. Later I will update this post with some pictures and video. She loves it. Her room was redone in pink and is much more "girly". She likes that she can play with her brother and sister. God annswered some prayers today.

Busy Sunday and Monday

2009-09-07T23:08:00.006-05:00

We had a busy Sunday. Tooth fairy came and left her $10. Told her, because we are in KC, the tooth fairy considered cost of living and taxes difference.LOL. We had few friends and family came to see us. It was a good visit for everyone. Of course Mikayla was busy between the visit and the playroom. She has good sister to play with and a good brother to watch her.
Her hemoglobin was 7.2 (7 or below needs transfusion) and was told that possibly by Monday morning they will transfuse. Nothing stops her from playing. We all can expect any 5 yo will do the same thing. She was tired but did not go to bed till 10:30.
Monday: She woke up around 9 am. Had tater tots, bacon, peanut butter toast and orange juice for breakfast. No transfusion because Hgb stayed 7.2. She has been maintained at 8-7.2 for last 4 days. We were told that bone marrow aspiration will be probably Wednesday. She had a repeat EKG Sunday and docs today said , a little prolonged Q wave which they are not alarmed. They want to monitor that due to some medication can make it worse but she is not taking any at this time. She has a cardiac consult tom. Of course she played all day. We left to go to store this pm and was upset not just because she cannot go but bec. kuya (big brother) and sissy are leaving her. They promised her a present so she was somewhat ok. Mariz and Mon (my sister and brother in law ) stayed with her and Malachi while we were gone. I can't wait for the day that she can go to a store again. She always wants to ride in the cart and try clothes. When she wants somethings and I explain why she can't have them, she will always say, "Oh right mom , we're only here to get what we need and not what we want" . She even tells her brother and sister that when they ask for something we don't need. One of this days, she will go home and go to the store. I know she will...
Then of course it was time for Daddy, (kuya) Damien and (Ate) Darian to go home. She hates that. When they left, she was upset. Her mood changed. She was crying. She went to bed early. It is so hard to be away from each other. But we don't have a choice right now.
My heart breaks when I am away from any of them. Mike does an excellent job playing both roles and I am thankful for that. It is just...when it comes to taking care of certain things, a mom has that TOUCH....(no offense to dads )
Again , we would like to thank you for praying non stop for Mikayla and our family. All of you who are helping us in so many ways. We would like to thank you for everything. Individuals, couples, families, churches, organizations, businesses, etc , THANK YOU so much. If we missed or forgot to thank you , we apologize sincerely. Thank you and God Bless us all.
rea

Eventful 24 hours

2009-09-05T22:52:00.002-05:00

Yesterday, the vascular team changed Mikayla's bandage in the afternoon and added a lotion to the site before applying the bandage that covers her picc line. A picc line runs out of her arm all the way to her heart for chemo and meds. While taking a shower last night Rea placed Press N Seal over the bandage to make sure it did not obtain water. This is part of her daily shower ritual and is a requirement. After drying her off Rea removed the Press N Seal as always, but this time it pulled an inch or so of her picc line out. When the nurses and dr. came to inspect it they recommended that it go ahead and be removed because of the chance for infection. This was pretty traumatic for Mikayla. It was painful and completely unnecessary if the vascular team stuck to what they always did which was to apply the bandage without the lotion. After pulling it out there was discussion whether or not the picc line had broken off inside and nobody could find the exact measurement it was supposed to be. This morning had an ultrasound and xray to determine if it had broken as well as having to go through the pain of having another put in. I was there and believe me numbing or not it was painful. There is some bright news though. Mikayla lost a tooth today. She was brave enough to pull it herself. It currently is in a ziplock under her pillow awaiting the tooth fairy.

Preliminary Result

2009-09-04T04:34:00.001-05:00

I was informed verbally Thurs pm that they found 16% Leukemia blasts in her bone marrow. The attending doctor who spoke to me said that they are still hoping.... The team spoke to Dr. Gamis who is her primary oncologist regarding the result. Instead of doing the next course of chemo right away, they will wait one week and repeat bone marrow aspiration and see what is her blasts count. This will help determine the dosage of the new drug they are adding to the chemo. This one week wait will also prevent added risks to her heart and lungs. She had 4 total tests today: cardiac and pulmo to check how the last 2 courses of chemo affected them and establish a baseline before they start another one. If she starts with this chemo, there will be no break (home) at this time. We pray every night that things will change. I felt numb when the doc told me the prelim result today. I wanted to cry , shout , get mad. I know it will not help the situation . I also know that I need to keep hoping.. keep believing ... because there is nothing impossible. I know that my family and friends are praying non stop for us. Thank you so much ... God Bless
rea

MORE UPDATES ON FRIDAY

2009-09-02T21:59:00.002-05:00

Mikayla will have a bone marrow aspirate on Thursday to determine if the Leukemia is in remission or not. Her treatments will change depending on the outcome of the test. Test results will be in Friday with final results coming in around Monday.

Everyday is a better day.....

2009-09-01T22:50:00.003-05:00

It was a very busy day. Malachi was screaming, nurses and parents all heard him from everywhere. Mikayla was pretty much in the play room all day. Any time she can go , she's there..LOL.
She has 2% blast based on her lab but they really will not know until bone marrow aspiration which can be on Thursday morning. It takes at least 24 hours or so before they get the result. We are hoping that it will be ok. Whatever the result, her primary doctor already has the plan as far as treatment is concerned. We pray everyday that she gets through this and it will always be a better day. Waiting for her numbers is not easy. Those numbers drive me nuts! I don't fully understand them all but I know a little to get by. What I for sure know , MIkayla is very active, playful , full of energy , doing great in school, eats and drinks well,goes to the bathroom and loves & kisses her brother (Malachi)all the time. All these are answered prayers.
By the way , we had a little problem with supper. I placed the order about 6:45 and it was already 8:15 and still don't have them. I did not want to complain because I really try to be patient but I went to the main nurses station to ask because Mikayla and Malachi are hungry and I was so frustrated I started crying.
About 10-15 min later we got the food. The child life volunteer stayed until we got them. While waiting ,I gave Malachi a shower. They ate , then I gave Mikayla a shower. She brushed her teeth. Gave her vanc paste for her mouth. And put her to bed. By 9:30 they are both asleep. And tomorrow will be a better day....
I sent a text message to Mike because I have not talked to the kids. Damien called me back said good night and that he loves me. My Darian is already in bed. I miss them so much. Mike is driving to KC tomorrow after he drops off the kids to school. My sister and brother in law from Seattle are coming to stay for a week to help me out. See , it will be a better day.....
Again , you guys out there who praying everyday , supporting us , sending cards and gifts , helping us financially , organizing and having fund raising events for MIkayla , THANK YOU so much. God Bless and good night.......
rea

Major hurdle crossed

2009-08-30T11:13:00.005-05:00

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.

videos and pics from this week

2009-08-29T09:33:00.015-05:00

Long days....

2009-08-27T22:16:00.005-05:00

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

Thank you for my blessings...

2009-08-26T22:52:00.004-05:00

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

Believe..........

2009-08-25T18:09:00.006-05:00

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

Leukemia Blasts

2009-08-24T21:46:00.003-05:00

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.....

Hello

2009-08-21T20:28:00.003-05:00

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

doing well

2009-08-20T23:03:00.004-05:00

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

2009-08-18T21:12:00.000-05:00

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Her own little world

2009-08-18T20:08:00.003-05:00

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.

New problem

2009-08-16T21:19:00.005-05:00

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).

Doing well

2009-08-14T14:22:00.002-05:00

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.

Not much to do

2009-08-12T20:45:00.002-05:00

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.

Results of todays spinal tap

2009-08-11T22:29:00.002-05:00

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.

Mailing address for Mikayla

2009-08-10T23:26:00.002-05:00

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.

2009-08-10T14:30:00.002-05:00

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.

Leukemia in her central nervous system

2009-08-08T18:16:00.002-05:00

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.