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Wonder Girl

Book time

Leukemia - Yea...

By Michael Bassett

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MRI results

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

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

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

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

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.

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...........

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

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

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.

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

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

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.

Mikayla

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!!!

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

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

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.